Caroline's Cancer Diary

Memorial/Celebration of Life - May 17, 2008

2007-12-27T17:26:00.000-08:00

Hi all, Caroline's memorial has been set for Saturday evening, May 17, 2008, 6:00 pm, at the Ouray Community Center.

If you're able, we would love for you to come cry, laugh, tell Caroline stories, and celebrate Caroline's life with us. While I'm sure there will be some tears, Caroline fully intended that we gather to celebrate her time with us and have a good time while doing so.

Following is the website for the Ouray Chamber of Commerce. It will provide you with some information about Ouray and there's a link at the top titled "Lodging". The motels I'm familiar with and can recommend are:

Box Canyon Lodge
The Best Western
The Comfort Inn (which accepts pets)
The River's Edge
The Victorian Inn

There are also several Bed & Breakfast facilities but I haven't stayed at any of those.

http://www.ouraycolorado.com/

I spoke with Robert about driving from the Dallas area. He said it would probably be best to drive:

Dallas to Albuquerque
Albuquerque to Pueblo, Colorado (Interstate 25)
Pueblo through Gunnison to Montrose, Colorado
Montrose south to Ouray

Let me know if you need specifics.

You could drive from Albuquerque to Durango, Colorado, but you'd have to go over Red Mountain pass --- it's definitely NOT for the weak of heart. You could go to Cortez and come over via Telluride. (The same for the New Mexico folks as well if the roads north of Durango are bad.) If you would like to come and would like to car pool, let me know and I'll try to connect people.

Please let me know if you have any questions or if I can get any information for you.

We're all doing well. Ian has been in Ouray with Robert since Sunday which has been great for both of them. As always, they opened the Buckskin for several hours Christmas day. Ian's due to depart tomorrow but I heard on the news this evening that the Denver airport has cancelled a ton of flights due to weather. Here in Prescott it's just cold (well, cold for us desert rats).

We miss Caroline terribly - I think of calling her all the time. I'm old enough to know it takes time - it just doesn't make my heart hurt any less. Thank you for the cards, emails, phone calls, love, and sympathy. I just love hearing from Caroline's friends. We hope to see you in May - if you can make it there safely.

Love to all,

Caroline's Family - Robert, Ian, Diane, Al and Suzie

Suzie West
suziew@cableone.net
Home: 928.776.0202

Correction to site for Caroline's video

2007-12-23T10:52:00.000-08:00

Sorry, folks! The correct link is:

http://www.cholangiocarcinoma.org/video/caroline/

Who knows what you got at the other link?!?!?!

Suzie

Caroline's Video: In Case I Die

2007-12-23T07:59:00.000-08:00

Rick has posted Caroline's video to:

http://www.youtube.com/watch?v=szLmAPW39uE&feature=user

Thank you, Rick!

This video was made by the Ouray High School Film Class - specifically Kelsey Winfrey and Zach Ficco, as well as their teacher, Nancy Nixon.

Zach and Kelsey apparently shot about 5 hours of film. The video, In Case I Die, has been edited to 17 minutes.

Those of you who come to this CC site are dealing with a very important fact of life: facing your own death or that of someone you love. I think those of you who visit this site and are familiar with Caroline's blogs will appreciate this film - its humor and honesty.

I've decided God needed someone who thinks outside-the-box. I'm sure Caroline is shaking things up a bit in Heaven.

Love to you all,
Suzie

My Sister - Sweet Caroline

2007-12-16T15:15:00.000-08:00

Caroline loved the whole CC Family and your support meant the world to her. Following is a copy of an email I sent today that I thought I would share with you. I want you to know how much your blogs and posts also meant to me, Caroline's sister. You provided information, hope, comfort, and support. I also shared the heartbreak of families and friends who lost loved ones. We thank you from our hearts for all you gave to, and shared with, Caroline.

My dear family and friends,

Caroline lost her incredible battle with cholangiocarcinoma at 9:09 am, Friday, December 7, 2007, in Montrose Memorial Hospital. Diane and I, as well as her husband, Robert, and her dear friend and health-care nurse, Colleen Hollenbeck of Ouray, were all with her when she slipped away.

Robert, Diane and I truly believe that if Caroline had to die now, she departed in just about the best way possible: Wednesday she ate crab, lobster and shrimp; she bowled with her beloved bowling team Wednesday night (and even increased their score!); Thursday morning she could not be wakened; Friday morning she died. We are incredibly thankful Caroline did not linger for days/weeks/months - Caroline would have hated that.

WARNING: This is going to be one of my long emails which will be cathartic for me and will share information some of you will want - others will not, and I understand. If you want, just skip to the part below the asterisks (*******) near the end of this email.

Robert called me Thursday, December 6, and told me he was following an ambulance to the Montrose Memorial Hospital. After not being able to wake Caroline Thursday morning, he called Colleen. Colleen took Caroline's blood pressure, which was extremely low, and after checking with St. Mary's Oncology Center in Grand Junction (where Caroline was being treated by Dr. Bergen) they called the EMTs in Ouray. They stopped the ambulance three times on the way to Montrose trying to get a line in Caroline but her blood pressure was so low they were unable to insert a needle in a vein. Tests at Montrose Memorial revealed that Caroline was suffering from various infections in her bladder and bile duct, her kidneys were failing, her liver was gone, and her blood pressure was close to nonexistent. The damage to her body was irreversible. If they had been able to stabilize her, they would have flown her to Denver to have the stint that was placed in her bile duct early November cleaned out. Blood tests taken earlier that week revealed that the stint was blocked and Robert had scheduled an appointment to take Caroline to Denver on December 19 to have the stint cleaned or replaced. Robert called me several times with updates and Diane and I decided to head to Ouray.

Oh emergencies! The oil in my 4-Runner had to be changed (as storms were entering Colorado, we needed to take a 4-wheel drive) so Al took the car to have the oil changed, Diane had been in the process of passing a kidney stone and had decided not to go until she passed the stone. Robert called again saying the doctor wasn't sure Caroline would make it through the night. Diane repacked her things, Al returned with the car, and Diane and I departed Prescott about 8:40 pm Thursday night. I hit a deer just north of Flagstaff. I found it beside the road and when I approached it with a flashlight it stood and ran off using all four legs. I remember being panic stricken as it ran off that it would be using only three legs - I was so thankful it was running away with all 4 legs down. I mention this as many of you know I am so acutely aware of deer and elk beside the road at night and try to be so very careful. The car was ok (until we turned left into a gas station in Kayenta when I realized the bumper was bent in towards the wheel) but I was near hysteria --- it just felt like a really bad omen. The wind was tremendous in Arizona and after entering Colorado we decided to take the long route through Dove Creek and Naturita to avoid steep mountain passes as the rain and snow were blowing vertically either from the left, right, or head-on depending on our direction and it was really dark. Unfortunately it took us 11+ hours to arrive at the hospital. The turnoff from Highway 62 to Highway 550 to Montrose was the longest 26 miles I've ever driven in my life. We arrived after 7:30 am Friday.

When we entered the ICU ward at Montrose Memorial, the nurses told us they had been waiting for us and took us immediately to Caroline with Robert and Colleen by her side. The attending doctor, Dr. Felberg, told us they had been giving Caroline the strongest possible heart medicine to keep her blood pressure up, and her alive, until we arrived. Oh my god, had she suffered just so we could say good-bye? Colleen and Dr. Felberg explained to me that actually the septic type gases or substances, like ammonia, produced by the infections are a blessing as they go to a person's brain and just make them go to sleep --- it's like a sleep-inducing drug that eliminates pain. It's the reason Robert couldn't wake her. How in the world was she able to bowl Wednesday night???? To ensure Caroline wasn't in pain, they gave her morphine. Dr. Felberg swore to me she wasn't in pain. When I went to Caroline and held her and told her I was there, she opened her eyes very wide. She did the same when Diane and Robert spoke to her. I honestly believe she knew we were all there with her. They gave Diane and me time with Caroline and then began pulling all the tubes out of her body. That incredible body - that body that had been poked, tested, filmed, filled with too many drugs to count, bruised, and swollen yet still responding to her absolute will to live. What an amazing body. Her hands - which touched, felt, wrote, expressed her essence with and without words. Those hands that shook when I last saw her in Socorro, New Mexico, as she tried to hold or manipulate something. We all touched and held her, talked to her, and then her breathing began decreasing and she very quickly and easily left us. Our beautiful, bigger than life baby sister was gone from this world. Did Caroline fly away on the back of that deer from Flagstaff?

A life fact: Even though you know it's coming and you try to prepare, it still somehow is an absolute shock and your heart breaks just the same. I cannot believe Caroline is gone. I cannot believe I can't pick up the phone and call her or that I'll pick up the phone and hear "Suuuuuzie, this is Caroline." I cannot believe I'll never see those big brown eyes again. I cannot believe she'll never again drive me crazy with her tardiness or undeniable insistence on something. I cannot believe she won't walk into this house again with 15 bags filled with crocheting, knitting, books, and who knows what else. I cannot believe I'll never again laugh at her. I cannot believe I'll never again enjoy her outlandish sense of humor. I cannot believe she'll never again put her arms around me when I'm sad and cry --- like now.

Our sweet baby sister lived big and out-loud. It was with care and interest that Caroline knew the name of almost every one of the 800+/- residents of Ouray, Colorado. That was Caroline. Ouray was not only Caroline's home but the people of Ouray were her family. During her years in Ouray she often worked at 2-3 jobs there at a time from City Treasurer to waitressing. She was involved with numerous organizations, publicly played the flute and recited her own poetry, supported everything and everyone "Ouray", and ultimately co-owned Buckskin Booksellers with Robert. Caroline even had her own radio show on Sundays - Sweet Caroline's Oldies. She loved the Beatles - a year ago we took her to Cirque du Soleil's Beatles' show "Love" at the Mirage in Las Vegas for her birthday. Apparently she told lots of "sisters" stories as she played old songs that reminded her of our youth in Duncanville. Caroline remembered everything! As some of you know, in addition to her blog on the cholangiocarcinoma.org website, Caroline had been producing a film about her life with cancer and her impending death. She enlisted two of the Ouray High School film class students - Kelsey Winfrey and Zach Ficco. In fact, during one of my visits with her in Ouray, I tagged along with the three of them as they filmed a scene. I tell you, Diane and I had no idea what this film of Caroline's would look like.

As Caroline states in her film, her control issues were too great to leave the planning of her memorial service to others. Because of the weather post December 7 affecting Colorado, Nebraska, Missouri, Texas, and New Mexico, and because the editing of her film, which contains five hours of footage, had not been completed, Robert, Diane and I decided to wait until May to hold her memorial so out of state family and friends might attend. Caroline's good friend and soul sister, Nancy Wolkin of Ouray, had lunch with Robert and me a day after Caroline died and told us the town of Ouray wanted, "needed", to celebrate her life now. Following Nancy's lead, the people of Ouray held a celebration of Caroline's life at the Ouray Community Center on Wednesday evening, December 12. The Community Center was filled with Caroline's Ouray family of friends and food. Diane and I heard great stories and left with a greater sense of the woman Caroline had become and why she so loved these people of Ouray. Something that really pulled my heartstrings was the number of young people who got up and spoke of Caroline and the impact she had on their lives. Nancy Nixon, the teacher of the high school film class, and Zach and Kelsey, worked diligently to edit 17 minutes of the film Honestly, I had such mixed emotions about seeing Caroline on film --- I had no idea whether I could stand it but it was, after all, her wish. I think tears shot straight out of my eyes when she first appeared on screen but the film was both hysterical and poignant ----- soooooooo Caroline. I was so amazed and proud of Caroline, Nancy Nixon, Kelsey and Zach. I swear this should be a short on PBS or HBO --- truly. The film addresses a fact we all live with every day of our lives but seldom speak of: death - our own death. How brave and inspirational that Caroline would so publically address and share this intimate part of her life with anyone willing to watch. I'm in awe of her tenacity and courage.

Diane and I remained in Ouray with Robert until yesterday (Saturday, December 15) until the roads cleared. It was good for Diane and me to be with Robert and I think it was good for Robert, too. We cried and laughed together and shared this time with some of the people of Ouray - including Elwood Gregory, whom Caroline dearly loved. As some of you know, Caroline was on extremely strong steroids which affected her in some interesting ways and provided challenges to those around her. For one thing, the steroids gave her tremendous energy and she often cycled into a very manic state. I remember sitting in Dr. Bergen's office and telling him that if he couldn't reduce the steroids, he needed to prescribe them for her caretakers. In all honesty, there were times we all wanted to throttle her. On the other hand, they seemed to reduce Caroline's inhibition which was revealing and often a lot of fun. And ..... her head became even harder ---- ugh. She also became more compulsive and compulsive about unusual things - like needing to buy "things"; the need to shop, shop, shop (I hate to shop and could easily live the rest of my life without ever walking into a mall again); at night instead of going to bed, holding and fondling objects and refusing to get into bed even though she was falling asleep sitting on the its edge while holding these items; refusing to allow even the smallest scrap of paper in her possession to be thrown away; sometimes talking nonstop; a need to continuously dump everything out of her multitude of purses and bags to "organize" things; the need to cover every surface around her with her things - sometimes falling asleep in a bed covered with her prized trinkets and slips of paper. Obviously there were very real psychological reasons for each of these idiosyncrasies: not wanting to go to sleep for fear of not waking up; not wanting to waste precious time on sleep; the need to control anything she possibly could since she couldn't control the cancer; the need to see and touch everything, big or small, that meant something to her; the need to have as many days on her calendar booked with at least one activity so she knew she had events to look forward to and, God willing, days to be lived. Her mind --- so complex and so active. She became enthralled with a TV program about the Dallas Cowboy Cheerleaders' tryouts because one of her best friend's daughter was a Kilgore College Rangerette and one of her Rangerette friends had tried out for the Dallas Cowboy squad. Since she became more debilitated and house-bound she loved the TV show "House", "Dancing With the Stars" (heaven knows she probably voted from her home phone as well as each of her and Robert's cell phones), Oprah (previously she never could understand how anyone had time to watch Oprah!) ---- all of this after the year before admonishing Diane and me for watching too much network TV (although she was appreciate that we turned her on to HBO's "Big Love"). Problem: when visiting us in Prescott, AZ, after watching Big Love, she wanted us to take her to one of Warren Jeff's towns, Colorado City, located in northern Arizona. I told her no way (this was during his recent trial) - I had no doubt she'd want to get out of the car and talk to the locals. I'm surprised it didn't occur to her to attempt to haul Zach and Kelsey over there to film an interview.

It was hard being in their house - it was even harder leaving. My car's battery had died the night it reached 10 degrees below 0. Robert and I pushed it while he tried to jump start it; then I pushed it with Robert's vehicle - the battery tried to ignite but just couldn't quite make it. Robert and the 4-Runner wound up near main street. A friend saw Robert, stopped and jumped the car. Do you know you could sit by the road in a big city for a lifetime waiting for someone to stop and offer a hand? The sky yesterday was clear and blue. The roads were amazingly clear affording Diane and me safe passage out of Colorado. The snow capped mountains stood tall and strong acutely reminding me that this life is not of man alone.

The last time I saw Caroline was a few weeks ago in Socorro, New Mexico. She and Robert annually attend a mineral symposium there and I drove over to see her. I took her to the Bosque del Apache Bird Refuge where we saw thousands of assorted geese, ducks, cranes --- and even a coyote. It was the kind of day together that has left me with a special, very visual, memory of a beautiful day with Caroline. Beverly Bowden was going to fly into Phoenix this Thursday and she, Diane, and I were going to drive to Ouray to spend three nights with Caroline prior to Christmas. We were all really excited and I'm so happy Caroline had that time on her calendar to look forward to. Ian was arriving this Thursday to spend Christmas with them. I'm so sad Caroline didn't get to see Ian one more time - she so loved him and got the biggest kick out of him and the events of his life.

From the beginning, Caroline's oncologist, Dr. Bergen of St. Mary's in Grand Junction, wanted to provide her with the best quality of life for as long as possible --- and that's exactly what he did. In fact, Dr. Bergen probably had no idea how well and long a life he would help give Caroline. As those of you who have read her blog know, she packed more into the last two years than many pack into a lifetime. I will be forever grateful to Dr. Bergen and Caroline's other doctors for the incredible care they gave her. She so wanted to live but, as Diane says, if Caroline lived to be 150 she'd still have a zillion things she wanted to do. Well, she got to mark a whole lot of them off her list. Dr. Felberg and the staff at Montrose Memorial could not have been any more compassionate and concerned - I will forever remember their care of Caroline and us.

****************************************************************************************************************************

Caroline's memorial will be held in May and everyone is invited. Be forewarned - it WILL be a celebration and it will be as unique as the woman being celebrated. Caroline had conspired with one of the local entrepreneurs, a man named Jody from New Orleans with an incredible kick-ass accent, to be in charge of a New Orleans jazz style funeral parade. Caroline has requested that part of her ashes be divided into baggies and given to those who promise to take her along with them to one of this world's beautiful spots and sprinkle her there. She would like fireworks - which Robert, who is on the city council, is going to try his best to arrange. Her film will be shown. I have no doubt that warmth and love will be extended to Caroline's family and friends by the people of Ouray. It will truly be a celebration of a very special life in America's little Switzerland - Ouray, Colorado.

Diane and I thank you for your love, support, comfort, and prayers these last 2+ years. It meant the world to Caroline and kept her going. As many of you know, I could not have gotten through this without it. While this is one of the most heartbreaking times of my life, I am forever thankful for my time with Caroline, my family, and my friends.

Love to you all,
Suzie

P.S. Please let me know if you think you may want to attend her memorial celebration in May and I'll let you know when the exact date is set and keep you posted as plans proceed. suziew@cableone.net

P.S.S. The attached pictures were taken March, 2007, while Caroline and Robert were visiting his family in Mississippi. They include Caroline, Robert, Lois (Robert's mother), and Ian (Robert's son and Caroline's step-son). I just love these pictures. The reason for the "You're Looking at a Legend" shirt is: a friend's daughter who lives in another city in Colorado mentioned that she was going to see Caroline in Ouray to someone. The young man replied he knew Caroline and said "Caroline's a legend." And that she truly is!

The Saddest Blog

2007-12-07T20:42:00.000-08:00

Caroline died this morning at 9:09 at Montrose Memorial Hospital. She was taken to the hospital yesterday by ambulance, after her husband Robert and Colleen Hollenbeck, our local home health care nurse, were unable to get her to wake up, and after consultation with the St. Mary's Oncology Center. Her blood pressure was very low, as was her blood sugar level. The emergency room determined that she had massive infection, probably in the liver, as well as bladder infection which had been diagnosed the day before. She was put on high-powered antibiotics to try and control the infection, with little response. Caroline's sisters, Suzie West and Diane Gray, drove through the night from Prescott, Arizona, arriving in Montrose about 7:30. Caroline was able to open her eyes and recognize her sisters, as well as Colleen, this morning. The attending doctor had told us that Caroline was just being kept alive by the blood pressure medications, and we decided to stop them, as there was no chance of her coming back from the infection. Her husband Robert, sisters Suzie and Diane, and Colleen, the home health nurse were with her at the end.

Caroline asked to be cremated, and part of her ashes made available at her memorial service for people to take and spread wherever they wish. The memorial sevice date will be posted later when determined, but will be after the movie she was making about having cholangiocarcinoma is finished. In lieu of flowers, please send your donations to Second Chance Humane Society based in Ridgway, Colorado, the Ouray Public Library, Hospice and Pallitive Care of Western Colorado, or Cholangiocarcinoma.org.

Thank you to all our friends and to everyone who has corresponded with Caroline over the last two years of this journey. We gained so much support from so many friends and relatives, and families of fellow cholangio sufferers. Our love to you all.
Robert Stoufer, husband of Caroline

Something New to Live For; Headed to Los Alamos

2007-11-29T08:59:00.000-08:00

New bass guitar! Thanks to Steve & Ruth for sending the bass guitar. This will give me a new interest in life.

We are headed to Los Alamos, New Mexico to do a gem & mineral show. Then I come back next week do chemo again at St. Mary's in Grand Junction.

I'm sorry I've not been e-mailing or blogging. I have to put my leg in a difficult position to sit at the computer.

We saw three bald eagles on our way to Montrose last weekend. We have a bit of snow in our front yard.

Gotta run. Have to leave later today.

Thank you for all your prayers.

Just up here in Colorado staying warm.

Sincerely, Caroline

Sorry I haven't blogged in two weeks!

2007-11-21T10:44:00.000-08:00

TRAVEL
We went to Socorro two weekends ago. I got to see my New Mexico friends, Dave & Mary Lou Comer and Toni Duggan. My sister Suzie came from Prescott and we went to the widlife refuge. We saw a coyote there. Got home and did poetry classes again and then went to Denver for a second time to talk to Dr. Durham and SIRT spheres. She said the juandice is an issue and I have to get my billirubin down below two and it's at 8 currently.

MEDICAL
Dr. Bergen in Grand Junction referred me to Dr. Durham in Denver. So did Dr. Kane from CU Med Center. They also want me to see another oncologist at CU Med Center, but Dr. Durham said we don't know if that was necessary. So last week, we saw Dr. Bergen on Thursday for a bone hardener infusion, then drove to Denver that night for our appointment with Dr. Durham. There is another chemo that Dr. Durham thinks I should try, as well as Dr. Bergen.

I also have an appointment for a stent replacement and to watch for malignancy in the liver bile duct in Denver with Dr. Fukami on January 16th.

BEEN FEELING TIRED AND DIZZY LATELY
I have felt tired, dizzy, confused, clumsy, pain, and fatigued. I still have hearing loss in my left ear. My hair is growing back which is nice. I'm going to a luncheon next week in Grand Junction for my support group which I always enjoyed.

And my 53rd birthday on Sunday! So I will make it another year.

Thanks again for cards, letters, help, support, prayers.

Just up here in Ouray happy to get one year older.

Sincerely, Caroline

Doing Better

2007-11-07T22:21:00.000-08:00

We got home Saturday from the surgery on Friday. I rested up on Sunday, attended two writing classes, one Monday, one Tuesday. Jaundice isn't gone, but is much better. And I confess: I bowled last night at the Elks in my league for the first time this year. My average was 66! But I had a good time. Unfortunately, my feet are swolen today as a result. I weigh 178 pounds and every week it's a challenge to find thingst to wear; hence, the gastroenterologist gave me an RX for a diuretic. He said it's mostly fluid build-up.

I saw both my oncologist and gastroenterologist today in Grand Junction. I'm to check in with Dr. Durham at CU Med Center in Denver to see about radioactive spheres or chemoembolization. I liked her very much and am willing to work with her. I also need to see if there's any clinical trials out there. I have a friend doing stem cell therapy at MD Anderson and that is another possibility.

I am going to Socorro, NM tomorrow with Robert for a gem & mineral show. There's a wildlife refuge near there that I really enjoy. I posted a picture last year from our trip there. There are Sandhill Cranes and Snow Geese - they make they neatest noise. My sister Suzie is coming from Arizona - it's her day to watch me.

So thank you everyone for your thoughts and prayers. I meant to call some friends in Denver while I was in the hospital, but my throat was sore from the ERCP. I also have a clogged ear from lying on my side for almost four hours and I can't hear out of it very well. I used an ear irrigator and apparently made it worse.

Just up here in Colorado, truly appreciating every day I have left, and looking forward to seeing the big birds in New Mexico again.

Sincerely, Caroline

Stent Placement Not So Good

2007-11-06T06:12:00.000-08:00

We went to Denver last Thursday after I had a platelet transfusion in Grand Junction. We went into CU-Anshcutz Oncology Center for an outpatient surgery expected to tak two hours, but it took almost twice as long. They were only able to implant one stent in on of the contortef bile ducts, and they had to go through the stomach wall. I was kept for observation on Friday night and realeasd Saturday to come home.

They say it'll take a week fot the jaundice to go away. One of the bile ducts may have a malignancy. I kept aski for solid food - I hadn't eaten in two nigts. I got jello, broth, juice etc. I feel not so bad right now, but I'm taking losts of meds for pain. They put me on some antiobiotics for a few days for infection.

I see my main onocologist on Wednesday, Nov. 12th in GJ, the gastroenterologit on Nov.20th. We are planning to go to the Socorro Mineral Symposium this Thursday. I'm feeling up to it and my sister Suzie should be there.

Did I mention that our car broke down last Wednesday on our way home from GJ. Looks like it'll just be the clutch. We called our friends, Art & Brenda Fox. Thanks guys.

I also saw a bear in our yard last week. He ripped a limb off the apple tree and just reclined against one of our box elders. I was searching in vain for my camera. Then a car load of tourists came by and started taking pictures and the bear whipped around the back of our house.

I don't know exactly what's next for me, but I'm going to talk to this tumor, tell my bile duct to untangle. I appreciate your thougts, love, and prayers. It helps keep me going.

I will go back to CU-Med for another stent implant in about 7-8weeks. These stents are plastic and have to be replaced every few months. I worry about the infection that comes along with these stents going in and out of your body.

Just up here in Colorado looking forward to winter and a time of release.

Sincerely.Caroline

Going to Denver for Stents Tomorrow

2007-10-31T21:47:00.000-07:00

STENTS
My gastroenteroligist is unable to do my stents - he only does them if they are real simple, but the blockages are way up where the liver bile duct branches. So we are headeded tomorrow to get stent implants in my bile duct on Friday. They will do this by going down through my throat. If that doesn't work, t hey'll go in through the ribs.

I'm sorry that I haven't called anyone from Denver to hook up, but we're not sure what to expect. We're trying to get the American Cancer Society to get us some discounted rooms, but it's short notice, so we may just stay at Motel 6, and try to see Ian for dinner one night. I may have to stay over for observation.

TRANSFUSION
I have to get a blood transfusion in Grand Juctiion tomorrow at 9:30 am to get my platelets up. Then, we'll head to Denver and spend the next two nights there.

If you need to reach me, call Ian, my stepson at 303-368-7756 at home. You may reach his mother Grace. I don't think she'll mind if anyone calls. Or try Motel 6 in Aurora.

I may have to stay one night at the hospital for observation.

I am slowly working my way through e-mails and I know I owe a lot of you responses. I'll try to get caught up soon.

I have scoot, much to do before we leave for Grand Junction at 7am tomorrow.

Just up here in Colorado, going to the doctor almost every day.

Sincerely, Caroline

I Am Jaundiced

2007-10-25T11:43:00.000-07:00

I have a lot to catch up on but the most recent thing is that I really had a hard time after my last FOLFOX on Wednesday, Oct. 17th. I started noticing my eyes turning yellow on Sunday. It appears I have a bile duct blockage and will need a stent soon. I saw Dr. Kane, a specialist from Denver yesterday. She said some tumors may have grown in my liver and are squeezing the bile duct or I may have a tumor in the bile duct itself. I was so tired this weekend that I slept a whole bunch. I got mouth sores really bad - it was hard to talk, eat, or drink.

Dr. Kane is recommending that I not do FOLFOX next Wednesday, Oct. 31st. She is also recommending seeing a gastroenterologist and possibly some other doctors in Denver for ERCP and some interventional radition therapy such as the SIRT spheres.

I had an ultrasound on my liver yesterday which was inconclusive.

We have had several snows here but the last one was on a Sunday when I couldn't move, so it was nice to watch the snow fall. But the last few days have been outrageously gorgeous - very sunny.

I must apologize - I owe phone calls and e-mails to several friends. I don't think I've checked my e-mail for two weeks.

Thank you everyone for your thoughts and prayers.

Just up here in Colorado soaking up the sunshine before too much more winter gets here.

Sincerely, Caroline

Recent Photos

2007-10-10T08:44:00.000-07:00

I'm still not realy good with this photo stuff.

Photo of me with woman in maroon sweats is Leslie Stoufer, my sister-in-law from Mississippi.
We're on the Durango-Silverton train. She heads a surgery unit in Jackson.

The photo of me with the woman in red hair is long time friend, Alana Miller. She lives in Colorado Springs and has an older daughter that graduated from Colorado School of Mines with an engineering degree, and her youunger daughter just graduated from Embry Midlin here in Prescott. She now has a job in Phoenix. These women are not afraid of science. Alana works for Barnes & Noble now and we always talk about books.

The picture of me in the cowboy shirt is with Jeff & Sharon Rowe and Pete & Barb Crossan.
They live in Salida, although Barb and Pete will be spending some time in Florida tis year.

The black lab puppy belongs to my friend Margaret Park Thomas and her daughter Taylor. He looks very much like a black lab we had growing up named Black Jack.

The yellow tabby in the bed is my constant companion Biscuit.

Next is Ruth, a breast cancer survivor whose hair has grown back. She's been a great inspiration to me. We were diagnosed with cancer about the same time.

Next is a photo of my husband Robert and stepson Ian in front of Ian's favorite vegetarian restaurant in Denver, The Watercourse. Ian is a vegan - doesn't eat any animal products.

Then we have a classic shot of the Durango-Silvetrton train which I rode last week with Robert's brother Mike and his wife Leslie. It was wonderful!

Lastly, I have a picture of Robert feeding a doe an apple off our apple tree. The deer and bears have really been wreaking havoc on that poor little tree.

All for now. Must scoot.

Sincerely, Caroline

Having a Wonderful Time in Arizona

2007-10-09T11:50:00.000-07:00

GRAND CANYON
We met my sister Suzie and brother-in-law Al at Williams, AZ last Friday and rode the train to the south rim of the Grand Canyon. It was great fun. I do believe the view is prettier from the north rim. My sister Diane and I went to an air show on Saturday and had a blast. I'd never been to an air show before, and it was amazing what those guys did. Diane is a retired flight attendant for American Airlines where she worked for 31 years, and I flew for Reeve Aleutian Airways back in 1975 in Alaska. What an adventure it was.

SPA TREATMENT
I'm gettting a facial on Wednesday and a hair trim. Not that I have that much to cut, but I just want to shape my hair up. I'm passing from the Sinead O'Connor to the Mia Farrow "Rosemary's Baby" look. I do have super-puffy checks from the steroids and a good appetite. Last night my sister Suzie made chicken pot pie like my mother used to make.

Have I mentioned that I am able to give myself a shot now. If I don't do it for a few days, I start gettting afraid of it again. That phobia has a name, but I can't think of it right now.

BEING PROACTIVE
During the book show, I did go see a specialist regarding SIRT spheres and am looking into that. That particular doctor suggested some other things as well such as tweaking chemo. The FOLFOX appears to have stablized the tumors in my liver, but it is hard on the soft tissues in my head - septum, esophagus, brain cells? I don't know how long I can do this regimen, so I'm being proactive and looking into some things for the future.

Anyway, if anyone wants to call me at my sister's house, the number is 928-776-0202. My cell phone is 970-596-1068, but it's not working great here.

Thanks again to everyone for your support. I think it keeps me going!

Just down here in Arizona enjoying some wide open spaces.

Sincerely, Caroline

PS My sisters and I went to see "3:10 to Yuma" and it was very good.

Headed to Arizona

2007-10-04T07:13:00.000-07:00

We leave today for Arizona. We will be staying in Williams and ride the train to the Grand Canyon tomorrow. We rode the train from Durango to Silverton yestserday and it was wonderful. The aspens on the Durango side were perfect. We got some snow on Red Mountain Pass, so those leaves might not be as pretty. The cottonwoods in our valley are beautiful right now as are the aspens near Ridgway and just out of town here in Ouray. Oktoberfest is this weekend, but I will miss it this year. I'm going to go to my sister's house in Prescott for about 10 days. This will give Robert some respite, plus he has budget meetings three days next week for City Council.

Better run. Got lots of packing to do yet.

Just up here in Colorado, enjoying the fall, friends and family.

Sincerely, Caroline

So Much to Look Forward To

2007-09-30T06:59:00.000-07:00

SO MANY BOOKS, SO LITTLE TIME
We have had a wonderful time here at the Mountins & Plains Independent Booksellers Association Fall Conference. So good to see many friends - booksellers, book reps, etc We've gotten lots of advanced reading copies of books. Our hotel, the Marriott, has the most conformtable bed, so I've been taking naps in the afternoon which is really helpful.

We have learned a lot at this show. Robert wants to do a You-Tube and a My Space for the bookstoe. So watch for that later.

We got to have dinner with Robert's son Ian last night at an Indian restaurant. It was good. He leaves tomorrow to do a show in Las Vegas. Last week, he was in Columbus, OH. The kid gets around with his new job.

Thanks to Jan Smith of Western Reflections Publishing - one of my loyal blog readers. She was in a cancer fundraiser in Lake City, CO and had a luminaria lit in my honor. Thanks, Jan.

Sorry I haven't gotten to see some of you on this trip. The book show is intense, and when I got tired, I went to the room and took a nap. Jody, I will catch up with you when I get home.

RADIO SHOW
I hope to get home in time to do part of my radio show on KURA-LP, 98.9, Ouray, CO. I don't know how to stream it yet, but if you are into that, just look them up on the internet. I'm usually on Sunday afternoons, but I've either been out of town or sick and it's been about a month.

I'm also still working on the film with the kids at the local high school.

LOTS OF FAMILY
Robert's brother Mike Stoufer and his wife Leslie are on their way to Ouray as I type this. They will be in tomorrow morning. We will be riding the Durang-Silverton train on Tuesday. Later in the week, we are going to the Grand Canyon and riding the train from Williams, AZ up to the canyon. My sistert Suzie and her husband Al will meet us and I will go home with Suzie the next week. While there, my cousin Nancy is coming in from Florida for a visit. Then I get back about Oct. 15th and have chemo on Oct. 17th.

Robert tells me it's time to hit the road. The aspens should be peaking in our area if it didn't snow on them while we were gone.

Just up here in Colorado, soaking it all in! Thanks everyone for everything.

Sincerely, Caroline

Headed Back to Denver for Book Show, Not Doing Play in Montrose

2007-09-26T08:37:00.000-07:00

Robert & I will leave for Denver for the Mountains & Plains Indepenedent Booksellers semi-annual conference later today. This is always a really fun event for us - good classes, get to meet authors, hear about new books.

Thanks to good friends Barb & Pete Crossan and Sharon & Jeff Rowe of Salida who came over last night for a visit and bought us dinner! Thanks guys! I'll get your picture posted on the internet soon.

I had FOLFOX last Friday. They raised my dosage as I have gained weight. We attended a seminar on Saturday (50 Essential Things to Do If You Have Cancer by Greg Anderson who has a book out by the same title. He has written other books as well. He is a 24 year cancer survivor.) Then on Sunday, I hit the big slump. I was so fatigued I couldn't move. I missed my radio show, play practice for Vignettes of History. I will miss the next play practice , so I've decided not to try fly back home for the performance on Saturday in Montrose, but I encourage any of you to attend as it is very good. (It's at Magic Circle Theater in Montrose at 2pm and 7pm with refreshments served afterwards by Camp Robber Cafe.) After hitting the wall with chemo on last Sunday, Roberat & I both felt it was better that I not travel alone.

GOOD NEWS-
My last liver scan came back unchanged! So this FOLFOX chemo seems to be working. I'm still investigating SIR spheres - anyone out there have any experience with them? My tumor marker was up in the 8,000 range which is quite a bit but could mean that cancer cells are dying.

MUST RUN-
We are trying to get ready to leave town, so I have to scoot. The aspen leaves are starting to peak and we've had beautiful crisp fall days.

Just up here in Colorado enjoying another fall! Love to you all.

Sincerely, Caroline

Back Home From Denver - Headed to GJ Tonight - Saw Radiation Oncologist in Denver

2007-09-17T18:28:00.000-07:00

We got home from Denver a few hours ago. Robert had an important City Council meeting he didn't want to miss, so we came home and will head up to Grand Junction tonight for a CT scan at 8:30 tomorrow morning. We have two other doctor's appointments. One with a psychiatrist for med management and one with a talking therapist to deal with depression and other losses associated with having cancer and losing so many people.

MEETING WITH RADIATION ONCOLOGIST IN DENVER
I met with a Dr. Durham last Friday in CU Anschutz Cancer Center in Denver. I liked her very much and we had a good meeting about doing SIR spheres or radioactive seeds in the hepatic arteries. She said I don't really have any tumors to treat in my live bile duct or colon, and she offered several options for targeting tumors in my liver where I have twelve tumors, four - six which were problematic at my lasat scan. Hopefully my scan tomorrow will show some stabilization. She said she usually gets people at a more advanced stage than me, and she felt that I was relatively young and in good health for this procedure which involves putting Yttrium-90 isotope into my hepatic artery. I am up for a little radioactivity. I will consult with my regular oncologist on this and a specialist in Denver whom I have worked with before.

DENVER GEM & MINERAL SHOW
We had a pretty good show in Denver. I mostly enjoyed seeing lots of old friends. Last year during the gem show, we also had a book show so I attended that while Robert did the gem show. So I hadn't had a chance to see many friends I knew back in the 80's and 90's from both Denver and Dallas, too.

I tried to stay out of crowds, but it's so hard not to hug old friends. I've been really sleepy and tired today, but I did wake up for a while last night, and I may be recovering sleep.

Wish me luck on my CT-scan tomorrow.

Just up here in Colorado, weighing the options.

Sincerely, Caroline

Headed to Denver Gem & Mineral Show

2007-09-11T21:16:00.000-07:00

We are headed to Denver tomorrow for the Denver Gem & Mineral Show. I will see one of the radiation oncologists at CU Med Center, but the oncologist I was to see on Monday had to cancel her appointment. I have to keep a low profile at the show - my platelets and white blood cells are low and I need to avoid crowds. Hard for me, a social butterfly to do. I haven't been able to have chemo the last two times. I'm taking more of my medications to get the neuropathy, pain, leg swelling, and sleep under control. That involves managing laxatives as well. As I've said before, all the best medicine either plug you up or the opposite.

We did the True Grit Days last weekend in Ridgway, 10 miles from Ouray. I got to meet Kim Darby, Johnny Crawford of the Rifleman, and Angie Dickenson. I got my picture taken with Angie. Everyone in town who dealt with her said she was very nice. She told me she hated to leave on Sunday because she was enjoying Ridgway and the people.

Anyway, I will blog more later from Denver.

Thanks for all your support and kindness.

Just up here in Colorado getting ready to leave town again. I like to travel. Glad to be here one more day.

Sincerely, Caroline

HAVING A GOOD TIME IN TEXAS

2007-09-03T08:18:00.000-07:00

EATING MY WAY THROUGH DALLAS
I made it to Dallas just fine on United Airlines last Thursday. They were very helpful and accomodating. I fly out again today. I'm glad I had yesterday to recuperate and got to see many friends and family members: AC & Jean Pass (cousins); Mike VanderBerg (my investment advisor who has stared a new non-denominational church on the west side of Ft. Worth); Darlene - a friend of Suzie's from their early days just out of high school working at National Bank of Commerce in the LTV building in downtow Dallas - I thought they were so sophisticated; Suzie's classmate Ronnie Cruse whose sister, Gail Cruse was cheerleader with my sister Diane and is the optometrist at Wal-Mart in Montrose where I now get all my eye check-ups.

It was great to have a rotation of visitors yesterday. I was recovering from having too much fun (i.e. junk food). I got a serious case of stomach upset at the reunion and all the sudden had to leave. I had so hope to do the "Gator" in the dance floor with Charlie Daniel, a friend nearer my sister's age, but it didn't happen. Charlie & I agreed that we could probably get down in the floor but would need help to get back up! Charlie's little sister Sondra was one of our dearest friends from my grade. I'm sorry, Sondra, I didn't get to see you this trip.

Margaret and I were very close friends growing up in Duncanville. Her father loved to feed us. Mr. Park took me to breakfast on Friday and we had the meat lover's Grand Slam. Afterward, he asked if I wanted a chocolate shake! He had one, but I had a cup of tea. Margaret, her daughter Tay, and I have been having hamburgers at all the places I can't get them like Whataburger. I did make my sister Suzie take me by Jack in the Box for two tacos when I first flew in. On Friday night, we went to a Mexican restaurant for one of Suzie's reunion meals, and I buried my face in a plate of Tex-Mex. I love New Mexican/Coloradoan Mexican food with red and/or green chili, but occasionally, I need that El Fenix or even El Chico fix.

I got a horrible case of the d-word at the reunion. It was probably the BBQ sauce on the delicious brisket. Could have been the snow cone from earlier in the day. Anyway, I had to leave the reunion in a hurry as not to embarrass anyone. I did have a few rounds in the bathroom that night at home, but mostly slept like a baby. I think I'm caught up on my sleep and on a schedule more consistent with the real world.

One of the reunion highlights was a tour of Duncanville High School. It is amazing! DHS is the second largest school in the nation based on square footage, but they have incredible sports complexes (this was and still is a great place for football in the fall - the TV show Friday Night Lights brings back memories of going to footbal games on Friday nights. There's a point in the fall in Texas where the hot weather breaks and you feel a little crisp snap in the air, leaves start to turn on the trees, and it's football weather). The high school has a beautiful kitchen for culinary arts where the students can practice and sell their wares to the students and faculty. Being such a big complex, they have halls in various departments with names of scientists, authors, artists, etc. The art department, dance studio, band and choir rooms with private practice rooms were all fabulous. The oldest part of the school is reserved for the freshman, yet this was the new part of the school when Suzie's class graduated in 1967. 1966 was the first one to use the new school. Girl's basketball was always big here, and they still host the AAUW girls high school tournament here every Christmas break. Back in our day, the girls had to play half-court. I guess they thought it would kill us to run up and down the whole thing.

"SWEAT LODGE"
One of the other treats of this trip is that Margaret and Tay have a brand new lab puppy named Relay. On Friday, I took him out for most of the warm morning which made me perspire quite a bit. I think I sweated out some toxins and some fluids which helped my infammations. And you wouldn't believe how well I'm walking - hardly having to use the cane, and trying to do some PT exercises. Relay looks like a dog we had growing up named Black Jack, so my sisters and I are having fond memories of that childhood pet.

FUTURE CHEMOS AND DOCTOR'S APPOINTMENTS

* Sept. 4th (Tues) Support Group, Tuesday, Oct. 4th, St. Mary's Grand Junction

* Sept. 5th (Wed) 9am, Chemo and Visit with Oncolologist at St. Mary's in Grand Junction

* Sept. 7th (Fri) PT - Noon- Ridgway

* Sept. 14th (Fri) 11:00am, CU Anschutz Med Center Tumor Board, Dr. Durham, Radiation Oncology, Denver

*Sept. 17th (Mon) 8:30am, CU Anschutz Med Ceter Tumor Board, Dr. Tracy Shefter, Oncology, Denver

*Sept. 18th (Tues) 10am, Dr. Sammons, Psychiatrist, Grand Junction for Medication Management

*Sept. 18th (Tues) 3pm, Fran Higgins, Therapist, Grand Junction - Talking Therapy

*Sept. 21st (Fri) 9am, Chemo & Visit with Oncologist at St. Mary's in Grand Junction

*Sept. 22nd (Sat) 8:30am - 4pm, Cancer: 50 Essential Things** , Grand Junction, $65/person

*Sept. 24th (Mon) 2pm, Fran Higgins, Talking Therapy - Grand Junction

** Note: This is the best book I' ve found on Cancer

OTHER IMPORTANT SCHEDULE ITEMS

*Sept. 8th & 9th - True Grit Days in Ridgway - we'll have a booth there under Buckskin Booksellers

*Sept. 12th - 17th - Denver Gem & Mineral Show - Main Show (Actual Dates Friday, 14th - Sunday, 16th) - Doing this show under coloradominerals. com. Our booth is down one f the hallways on the left as you come in the front door. I don't think they'll move us from last year's location.

*Sept. 26th - 30th - Mountains & Plains Independent Booksellers Association (MPIBA) - we will attend as buyers and attend many good free seminars.

*Sept. 29th - Vignettes of History - I will portray Verena Jacobson (Mining camp school teacher) at the Montrose Magic Circle Playhouse at 2pm and 7pm. (I'll have to leave the book show early).

Oct. 4th - 6th - Visit Grand Canyon with Robert's brother Mike & Sister-in-Law Leslie.

Oct. 7th - ? - Visit sisters in Prescott, Arizona

A WORD OF THANKS TO BROTHER -IN-LAW AL WEST (SUZIE'S HUSBAND)
Al, you've been so helpful to Ronnie Cruse (who's in a wheelchair), and me and my cane. Thank you for your help and patience. You're awesome!

Thanks, too, to Margaret Park Thomas, daughter Taylor, Mr. & Mrs. Park, DHS Class of 1967, and everyone who made a special trip to see me. You keep my motor running!

Just down here in Tejas - getting all my junk food fixes!

Sincerely, Caroline

HEADED TO DALLAS!

2007-08-29T17:56:00.000-07:00

I'm flying out tomorrow moring early for Dallas to attend my sister Suzie's 40th (really her 41st) class reunion in Duncanville, TX. My sister Diane will be joining us as well - this would be her 40th reunion. It would be my 35th. I am staying with my classmate from Duncanville, Margaret Park Thomas and her daughter Taylor (thanks ladies). It'll be fun to see people from Suzie's class and some friends my age as well.

HAD CHEMO LAST FRIDAY
I was able to have chemo last Friday. Blood counts were good or close to normal. We went to a movie afterwards, Becoming Jane, about Jane Austin and spent the night in Grand Junction. On Saturday, I was able to attend my retreat, and Robert ran errands and saw The Bourne Ultimatimum. We liked both movies very much. I went down with chemo side effects on Saturday night and couldn't do my radio show on Sunday. I started coming out of it on Monday. I think I got psyched about a trip to Montrose to see my radiation oncologist and his nurse who are awesome.

ALSO SAW RADIATION ONCOLOGIST
I saw my radiation oncologist on Monday. I told him that I thought my "radiation recall" was due to my bowling last winter/spring. He said to continue doing the things I love. So I hope to get back into bowling this fall. With my physical therapy, I think my leg should bend enough to bowl or I can request that the Elks let me use a wheelchair. I got one of those big plastic balls at physical therapy and I really like doing PT on it. I can do otherexercises, too, lying down.

FRIENDS HELP KEEP MY SPIRITS UP
We have friends in town from Delaware - Steve & Ruth and their boys Chad & Ryan. Steve is going to let me borrow a bass guitar of his which I've always wanted to take up. The boys are really good at baseball, and Chad is an expert on trains. Steve & Ruth are great parents.

We also had friends in town that I know from Duncanville: Clifton and Bobette (Brattis) Hyman and Jim & Phala (Bryant) Watkins?.

GOTTA RUN
I still have a bunch of packing to do. We have to leave by 7 am tomorrow morning.

Thanks again to everyone for your love and suipport.

Sincerely, Caroline

P.S. My radio show is 1pm-4pm CDT on your dial at 98.9, KURA, Ouray, Colorado or can be streamed at kara.fast-serv.com:9262/listen.pls. (I have no idea how to do the stream.) The phone number at KURA is 970-325-7289.

UPDATE - ROBERT NOT RUNNING FOR MAYOR

2007-08-23T17:27:00.000-07:00

Good Afternoon -

We will head to Grand Junction (GJ) first thing tomorrow morning. Blood draw is at 9 am, we see Dr. Bergen at 9:30, and hopefully we'll have chemo for the rest of the day. We are spending the night at a motel that the American Cancer Society got us a discount on. Hopefully, I feel well enough to go to the retreat just outside during the day on Saturday.

Another person is going to run for mayor which take a lot pressure off us. I told Robert today that we rarely have leisure time together and we both tend to be cranky, given our busy summer. He will remain on city council. The current mayor who can't run for mayor again due to term limits may run for a council seat. That leaves two seats from the other ward to fill. I am releived. The stress of having cancer is enough. It takes all day just to take my meds and manuever around the house with my bad leg.

My heart goes out to the Dave Hoskins Family whom I know through cholangiocarcinoma.org. Dave flung himself into life as long as he could, and his wife Edith was incredibly supportive. He lost his battle last week.

That's the news for now.

Just up here in Colorado trying to get things done.

Sincerely, Caroline

HAD TROUBLE BLOGGING

2007-08-22T23:34:00.000-07:00

First of all, I've been trying to blog all last week and it wouldn't let me change some things on the dashboard. I want to set up permanent photos and web links, and I just can't get it do any of that . If anyone can help me with this, please let me know. I need to contact the help desk, too.

Hairless Photo in front of Mt. Abrams: Here I am about 5 miles north of Ouray. I may have cancer, but when I look at these mountains, I sure don't want to leave this earth. The cemetery is on the left of the photograph. Thanks to Glenda Moore, whose husband has done well on my current chemo regimen of FOLFOX, for taking me out to the cemetery today to check on the headstone. Just a little bird poop and a few weeds grown up around it. We've had so much rain lately that it gets washed quite often. The view across the valley was incredible today. We've been having clear weather. And how 'bout my raccoon eyes! I've always had dark circle, but chemo really brings it out. If anyone knows about a great concealer for under the eyes, I'm all ears!

Old Time Photo: This other picture was taken about four years ago - my stepson Ian give us a gift certificate to the Old-Tyme Photo Gallery in Ouray. We sure had fun doing these pictures, and this is my favorite. THAT IS my husband Robert in the photo without his glasses. I do miss my hair. It is coming in and quite dark brown with some curls, but it's still awfully short and thin. It is cooler in the summer without a wig, but then again my head will get cold at night. I have several caps in which I can sleep. I guess that's what they did in the old days. Thanks to Polly Griggers for my latest red crocheted hat and to Maude (80 years old - I'm so jealous) from my support group in Grand Junction (GJ) who sewed me up a more traditional one. Robert doesn't like the wigs, but I'm going to have one re-styled. Sometimes I just want a break from the Sinead O'Conner look. I do have plenty of hats and scarves.

GOOD STUFF

Last week, I played Verena Jacobson, a school teacher from the 1920's here in Ouray, at the Ouray County Museum's "Walk Back in History". Because of the rain, we couldn't be posted on the sidewalks around town - we held it all inside at the Museum. Verena taught mostly up at the Revenue Mine above the Camp Bird. She has great stories to tell included in many books, but I got to view her last week on a video from the Museum's archives, so I adjusted my voice to try to sound more like her. We first did this performance last fall at the Wright Opera House as a "Women in Colorado History" type performance, and we're taking it to Montrose to the playhouse there the last weekend in September. This will be the big stage for me! I didn't think last winter I'd be alive for either last week's performance or the one in Montrose, but surprise, I'm still here.

We have friends here this week from New Zealand, Ross & Pauline. Robert went rock-hounding today at the Upper Camp Bird Mine. They didn't find much, but Robert was able to point out some ore specimens today to Ross who is a professor of geography from Christchurch. (Boy would I like to go there someday - don't put your vacations off. I'm not sure I'll ever get overseas again, but there's plenty in our back yard here in the Four Corners area. Ross and his wife both deal with geography, and they say there's a statistic that the closer you are to your cancer center/oncologist, the better your odds of survival.

Robert is going to try to go out in the mountains tomorrow with George Moore to do the second volume of Mines, Mountain Roads, and Rocks which has been a bestseller for us.

Okay, I have to go to my bedtime meds and hit the hay. If Robert wakes up and finds me on the computer, he'll have a fit. I did get to go back to physical therapy today, and it helps so much. I am determined to bowl again this fall.

More tomorrow. I'm scheduled for chemo this Friday, and plan to attend a support group retreat on Saturday if I feel up to it. I am looking for a ride home from GJ Saturday afternoon if anyone is going to be in the area.

Robert may possibly be running for Mayor this fall. One of the city council members from the other side of town resigned at Monday's council meeting over a lodging tax/affordable housing issue. We liked her very much and hate to see her go. That leaves only Robert who holds a seat until 2009 of the four council members plus the mayor. The Mayor is term limited and can't run again: however; she can run for a council seat on our side of town (called a ward). The other council member from our ward is up for re-election, but he is moving out of that side of town and has chosen not to run again. One of the council member from the other ward, up for election this year, is not running again as he is battling cancer. Anyway, if you are reading this and you're a registered voter in our ward, Robert needs signatures on his petition.

Just up here in Colorado taking advantage of the local organic produce and appreciating every extra day I get.

Sincerely, Caroline

Quick Update

2007-08-17T22:04:00.000-07:00

I have been feeling better this week, but it's been very hectic with work and fun stuff. I did have chemo last week on the 9th, went to Buena Vista on the 10th (last Friday), went into a slump on Saturday, and started coming out of it on Tuesday or so.

I have an appointment with the tumor board at CU Denver-Anschutz Center on Monday, Sept. 17th. I get to go back to PT next week on the Aug 22nd. I started giving myself shots again this week so I can do it when I go to Dallas and meet my sisters for Suzie's 40th reunion. My dear friend Margaret Park Thomas is letting me stay with her.

I miss my hair more than I thought I would, but it it slowly coming in.

Delaney - I'll try to get back to you first thing tomorrow morning. Jody - I owe you a phone call and need to pick your brain about something. I'm sorry it's taken me so long to get back to you.

Darlene - I'm sorry I didn't get back to you today. We got wrapped up in some business stuff this afternoon we didn't anticipate.

Good new is that my left leg is working better. Still a little sore, but better and I'm encouraged.

I have to go to bed. I'm dead on my feet. I could not sleep last night.

Just up here in Colorado, blowing and going. I"m sleepy now and need to give into it.

Thanks, everyone for your support. Sincerly, Caroline

PS I found out my new boyfriend from senior meals, George Swift,is more like 100 years old than 90. He's 98. What an inspiration!

Wish Me Luck! (Chemo Scheduled Tomorrow)

2007-08-09T00:49:00.000-07:00

This is a quick note as it is late and I need to hit the hay.

I'm scheduled for chemo tomorrow or actually today, so we leave early for Grand Junction. We hope to head over to Buena Vista aterward for the Contin-Tail, a rock swap. I told my husband Robert I can just as easily recover from chemo in the back seat of the car and a motel room as easily (almost) as I can at home.

I have two requests of the universe: better non-alcoholic wine and designer Depends. Is there some wine-maker out there who can do a better job with non-alcoholic wine? Fre is not so bad. Non-alcholic beer is pretty good. My friends tell me they're sorry that I can't drink - the oncologist said no alcohol while on chemo, and besides it's bad for your liver. Anyway, I remind them that with all the drugs I'm taking, I'm having a better time than anyone. Drugs can be fun, but I would give anything to have a day when I get to be "straight". Save drugs for when you really need them.

Okay, I have to go take a pill. Actually about six.

Thanks again everyone for everything. It's been a little hard staying positive this week, but I usually win that battle. Sometimes I just have to talk myself into it.

I owe a lot of people cards, calls, e-mails and I am so behind. I just wrote three postcards and can't find them. Chemo brain. My nose (septum) and esophagus hurt. If those tissues have worn away, it really worries me about what is happening to my brain. I have becmoe a real clutz. I drop things constantly or knock them over or catch things on my sleeve. I miss having hair more than I thought I would. Robert doesn't like me to wear wigs, and they would be hot now. I'm going to get one of them restyled. Okay, enough whining. I do know lots of people who have it worse than me.

Don't tell my husband this, but George Swift from senior meals is my new boyfriend. We've sat by each other on the bus to senior meals the last two weeks (the bus is really the senior van). Last week George kissed my hand, but he also kissed the new lady the week before. George is about 90 old, but he doesn't mind that I have a walker now.

Well hell, it's time to get up and go to Grand Junction, and I haven't slept. I can sleep on the way. That'll make Robert happy because he doesn't really like me to talk in the car.

Sincerely, Caroline

P.S. I tried to download some photos, but I couldn't figure out how. Google wanted me to sign some agreement, and I'll try to figure that out later.

Couldn't Do Chemo Yesterday

2007-08-02T14:32:00.000-07:00

BLOODWORK OUT OF WHACK
Tuesday, we drove to Grand Junction to spend the night so I could be ready to go for chemo first thing yesterday morning at 8:30 am. My platelets, white blood cells, and neutrophiles were too low. I've probably been around too many people and germs, although the oncoologist said you can infect yourself at home. So I've been cleaning things with a bleach solution and throwing out old sponges, expired foods, etc. As much as I hate to do it, I'll probably have to avoid crowds. My tumor marker is back up to 5000+ but Dr. B said my liver didn't feel enlarged.

We had a writing workshop here in Ouray last week which I participated in, plus I've been atttending other things at night like Shakespeare in the park last Sunday. Looks like I'll miss book club tonight - we're reading The Power of One by Bryce Courtney. I haven't gotten to it yet, but everyone says it's excellent. I've been reading lots of medical stuff plus things from the writing workshops last week. The short, short story seems to be all the rage right now in literary journals.

Thanks to Moosie, our friend in GJ for putting us up Tuesday night and the wonderful dinner you cooked, particularly those feta cheese & peach-stuffed poblano peppers. We did go see Hairspray on Tuesday night and Harry Potter on Wednesday afternoon both of which I really enjoyed.

MEDICATION ADJUSTMENTS/DAMN BLOOD CLOT
I'm going down to one steroid split in half per day which I try to take as early in the day as possible. I also picked up a blood pressure medication today. My blood pressure has been running high which is unusual for me - it's usually perfect. It's also for edema, or swelling in the leg which can be a side effect of cancer, but it's probably more from the meds. My left leg is bruised and swelling really bad. The blood thinner for the blood clot has a lot tod do with bruising. I fell off our porch one morning last week. I had overslept due to taking several things at night to help sleep. The next morning, Robert thought I should just rest, and I was late for Pam Houston's writing class. So I was in a tearing hurry and just bounded off the porch. But I picked myself up and got to Pam Houston's class and didn't think twice about it. I was preoccupied with all the good writing of the other students. Pam also critiqued a work of mine and what she had to say was very encouraging. I have taken Pam's class three times now and always gotten something out of it. (She wrote Cowboys Are My Weakness, Sight Hound, Waltzing the Cat, and has a new short story collection coming out. She has been anthologized in many literay journals (most notably Best American Short Stories of the Century), and won many awards.

My left leg is somewhat unreliable. It's usually fine in the morning when I try to do things like laundry or housecleaning, but then I have to sit with it up in the afternoon with ice. I also use Lidocaine patches. This is from the radiation recall caused by Gemzar. I have to use a cane, and I even got a walker today with a seat. (I like to go around town like Hugh Laurie's character on the TV show House and smack poeple with my hat and tell them to quit smoking.) I did walk four blocks down from our house to the Bon Ton last Sunday morning to be at brunch with some people from the writing workhshop. Then I did my radio show, then I went to Shakespeare in the Park. I have to face it - I can't fling myself into life like I used to. That's okay because I have lots of writing, reading, and knitting to do, and really there's some great stuff on TV. I just upgraded our package so I can get more movie channels and Animal Planet. I usually watch PBS and the History Channel.

SLEEP IS A GOOD THING
I get rather combative at night when I have to go to bed. We're learning to use any stimulating drugs or vitamins in the morning and leave the painkillers, Neurotin (for neuropathy), and sleeping pills for night. I do get obsessive about staying up late due to that fact that I don't know when this cancer will overcome me, and I have so much I want to get done. I could throw a blood clot anytime. And I have been fighting this shit for almost two years now. I told my oncologist I wanted to be one of best statistics, and he said you already are. Before cancer, I used to stay up late just because I enjoyed doing so much, but now I do feel much better when I get a good night's sleep. (Hear that sister Suzie! We're old. We need our sleep.)

Drugs are wonderful, but what I would give to be straight for a day or longer. Save your drugs for when you really need them! I do try to take advantage of the creative rush from steroids and the ability to remember things from the long ago past. I do have chemo brain and can get confused.

THE PLAN
Hopefully, the FOLFOX will work. It has worked for our friend and author, George Moore, who wrote Mines, Mountain Roads and Rocks, a local road log for Ouray County and one of our bestsellers. Robert is helping him do the second volume of this book. They are covering the area near Silverton. George used FOLFOX six times and his colon cancer is stable. Many of the treatments for liver bile duct cancer are the same as for colon cancer.

I'm looking into clinical trials again. If it doesn't work, I'll go for one of the "Hail Mary" trials such as stem cell research. Maybe I will end up in Mexico for treatment. My doctor says you can't "out-eat" cancer with nutrition, but I am trying to eat a better diet with little or no sugar or gluten, yet I've read that many people die of malnutrition. I did have two Krispy Kremes today, but I'm phasing those out. I spent all my adult life on a damn diet, so being told to eat more calories is one of the upsides of cancer. After that, I'll try hospice, possibly go live with my sisters in Prescott, or go to a place that deals with cancer patients at the end of their lives. I do get tired of having my loved ones put their lives on hold for me. But I have too much invested in this Folfox to fullfill my duty to die.

Thanks again to everyone for your love, support, prayers, kind thoughts, positive energy and so on. I have to go to the bookstore for a while, but I hope to come back and post some pictures. Jody & Delaney, I got some pics back of Coop from her birthday.

Sincerely, Caroline.

COMING BACK TO LIFE - BIG CHEMO LAST TUESDAY

2007-07-20T08:27:00.000-07:00

BIG CHEMO ON TUESDAY

I had a big chemo day on Tuesday and it really knocked me out. I had the FOLFOX - got the pump off yesterday for 5FU which I wear for two days. I also has Zometa, the bone hardener which I think causes my forearms and legs to ache, Aranesp for hemoglobin/red blood cells, and all the other attendant pre-medications for chemo. My platelets were low, but I was still able to have chemo anyway. I have been sleeping a bunch which is a good thing. My CA 19-9 tumor marker was 3821. My liver enzymes were all bit low or high, but nothing of real concern.

My left leg still hurts where they think I have a blood clot, so I'm going up on my steroids to two a day. I'm cutting Zoloft back to 1/4 pill. I try to take my steroids in the a.m. I've been taking Oxycodone for pain which causes constipation, so I try to keep my laxatives in balance with the pain medicattion. I have neuropathy really bad which causes my feet to swell and my mouth to react to cold. I can't have ice cream for the first five days or so after FOLFOX, and we just got Blue Bell, the best ice cream in the country, in Montrose, 35 miles up the road at the Russell Stover's Candy Factory Outlet. If I take Neurontin for for the neuropathy, I am gone. It really knocks me out. My oncologist wants me take it twice a day, but I would be asleep all the time, and it's just too busy right now in Ouray to be knocked out. I think I heard a statistic on TV that this is one of the busiest weeks for tourism.

HARRY POTTER TONIGHT
Speaking of being busy, Harry Potter comes out tonight. We ordered 60 copies and all of them have been spoken for. This is huge for our small town bookstore. I'm hoping to get down to the store for the sale.

WRITING WORKSHOPS
Week before last I was at a writing workshop in Taos. I took a memoir class with Barabara Robinette Moss who wrote Change Me Into Zeus's Daughter, Fierce, and she has a new memoir about having a rare form of cancer. I recommend all of her books.

I need to send a big thanks to my friend Jody who assisted me while I was in Taos. Thanks, Jody! Jody helped me give myself blood thinner shots, Alixir. She said I turned white the first day, but then I got better. I am quite a handful at times, so thanks Jody for your help and patience.

Starting tomorrow in Ouray, there's the San Juan Writer's Workshop. There are three fiction sessions that I plan to attend: Pam Painter, Pam Houston, and Robert Olen Butler. If any of you are reading this Pam Painter will have a reading on Sunday night 7/22/07, Pam Houston (Cowboys Are My Weakness, Sight Hound) will read Thursday night 7/26/07, and Pulitzer Prize winner (Good Scent from a Strange Mountain) Robert Olen Butler will read on Saturday night 7/28/07. Author readings are at 6:30 pm with student readings on the same day at 4:00 pm. All the readings are free to the public. I heard Pam Houston read in Taos from her most recent book yet to be published is really funny. The story was written in second person like her first story in the book Cowboys Are My Weakness. Pam has also been anthologized in the Best Short Stories of the Century.

I have to run - my husband just came home to pick me up for the Harry Potter Party - got to get my witch's costume on.

More later. Sincerely, Caroline

Susan G. Komen 3-Day Walk

2007-07-13T16:25:00.000-07:00

Caroline's long time childhood friend, Margaret Parks Thomas, from Duncanville, Texas, is hoping to participate in the Susan G. Komen 3-Day Walk in Dallas in honor of Caroline.

Margaret must raise at least $2200 in order to participate in the walk. She has a webpage at the Komen website if you would like to donate online:

http://www.the3day.org/dallas07/margaretthomas

If any of you reading this are in the Duncanville area, on July 25th Joe's Crab Shack on Highway 67 is making it Margaret Thomas Day for the race - they will donate 10% of every meal sold that day. Wish I was there ---- I'd gladly eat a ton of crabs on Caroline and Maggie's behalf!

Caroline should be home from Taos sometime this evening --- as far as I know, all went well and she had a great time.

Suzie Gray West

Headed to Taos, New Mexico for Memoir Class

2007-07-06T20:19:00.000-07:00

TAOS WRITING WORKSHOP
My friend, Jody Curphy, is driving me to Taos (as she did last year) for a writing workshop in Taos, NM. We had a great time in 2006 and I'm repeating a memoir class with Barbara Robinette Moss who wrote Change Me Into Zeus's Daughter and Fierce, both excellent memoirs. Barbara is a wonderful teacher as well as an artist. We leave on Saturday and I'll be gone a week.

FOURTH OF JULY
I got to be in the parade here on the 4th. I was part of the Woman's Club float. Most people didn't recognize me with my very short hairdo. (I have lost my hair and it is coming back in like a bristle brush. I do miss my hair, and I have some wigs, but right now they are too hot to wear.) We have a great Fourth of July here - old fashioned parade, water fights (people try to knock each other down with a very strong water hose from the fire hydrants), and awesome fireworks.- the sound echoing off the mountains in our notch is really something. We had a great day in the bookstore. It was really hot, and no one minded getting wet at the water fights. In fact, this is my 12th Fourth of July here, and it is the first one I can remember where we weren't in sweaters at night. I ate all day - BBQ ribs from the Masons, brisket from the Elks. I escaped to the Elks Rummage Sale for several hours and got some great bargains. I would shop in the sun, sit under the tent at the Elks, get up and shop some more, etc. I was at the bookstore most of the day and saw so many people. I got lots of hug therapy - hope I didn't affect my platelets or white blood cells.

I LOST ANOTHER FRIEND TO CANCER THIS MORNING
I am sorry to report that a friend of mine in Denver passed away this morning from pancreatic cancer, but she fought for four years - quite a record. I met Margaret Mullen through my friend Jody who's driving me over to Taos. In fact, Margaret had my oncologist while he was at Kaiser Permanente in Denver. We both think he's great. Margaret was at home under hospice care. Her mother said she went to sleep for about three hours and just didn't wake up.

Jody and I are going to Taos in celebration of Margaret's life. When I pass, I want everyone to go to something fun in my honor.

I have to scoot. I got messed up on my meds yesterday and didn't sleep last night, and I'm paying the price today. Have a million things to do before leaving tomorrow.

Sincerely, Caroline

Received FOLFOX Yesterday

2007-06-30T20:26:00.000-07:00

Yesterday I received FOLFOX treatment which takes just about all day. This weekend I'm very tired and taking it easy letting the chemo do its job.

I spoke with the oncologist about the liver scan taken 2 weeks ago - no new metastases and the existing tumors look stable. While my platlets were a little low, my red and white blood cell counts were good and my liver enzymes are very good - my liver is functioning. I'll have to be on the blood thinner shots for the rest of my life as the potential for more blood clots is very high. I believe this chemo will be ongoing indefinitely.

Thanks to everyone for all your prayers and support. Thanks to my sister Suzie for being here right now and typing this for me AND especially to my husband Robert who is a jewel.

Sincerely,

Caroline

P.S. Hopefully I'm going to Taos for a writing conference next week.

Good, Bad, and Incomplete News

2007-06-16T07:37:00.000-07:00

SCAN YESTERDAY
I haven't gotten results from the scan on my liver yesterday, but I'm going to try to track someone down by Monday. My oncologist and nurse were running like crazy yeseterday afternoon. I did also have an ultrasound on my left leg and they found a blood clot which is scary. They gave me a blood thinner shot (Elexiter?) and sent Robert home with shots to give me. Already my leg feels better. I also thought I had some TMJ issues, but already that feels better, too. That pain is symmetric in both jaws, and usually if the pain is symmetric, it means it's from chemo or one of the meds. The blood clot means I'm to take it easy and keep my leg up. I also have to avoid getting cut due to the blood thinner. Probably won't be able to do my radio show tomorrow, but who knows. I can keep my leg up there - just have to have someone schlep all my CD's into the station. I'm also to increase my steroids to two per day. Oh boy, Robert's gonna love this.

GOT FOLFOX TREATMENT & OTHER INFUSIONS
My bloodwork was really good. White blood cells were above normal. I don't know what I did other than pray like hell they were good. Red blood cells were good, and liver enzymes are normal or just silghtly above or below. So thank you everyone for your prayers, and thank you God for good blood! So I had FOLFOX, Avastin, and Zometa (bone hardener).

ASHLEE GOT SENT HOME
Well, I didn't have a chance to vote for Ashlee, but I heard she was one of the ones who got sent home on Thursday night on "So You Think You Can Dance". My friend Lisas says she's capable of doing better, but she got a bad draw for her dance. Perhaps next time.

MINING ARTIFACT SHOW TODAY
Robert is at the Mining Artifact Show today, Elwood is running the store, and I may go up later with my foot up at either the show or the store. I'll have had two steroids by then and lots of energy.

Just up here in Colorado enjoying the summer weather. Hope to get up to Camp Bird Road and see the wildflowers soon. Don't know if my hip can take the jiggling in the jeep.

Sincerely, Caroline

PS I was wrong about the tumor marker. It was in the 4400's last time and has been as hight as 11,000+. They took blood for that yesterday, but it always takes a few days to get results.

Scan Tomorrow - Wish Me Luck!

2007-06-14T16:35:00.000-07:00

SCAN TOMORROW
We're headed tonight to Grand Junction (GJ), to spend the night as I have a scan at 7:20 tomorrow morning. This will help to evaluate where we're at. I then see my oncologist at 9am. Hopefully, my red and white blood cells will be where they should be to have the "big" chemo, FOLFOX.

VOTE FOR ASHLEE ON "SO YOU THINK YOU CAN DANCE"
Lisa, a very good friend of mine in Texas whose daughter, Tara, is a Kilgore Rangerette is rooting for Ashlee who was Tara's lieutenant in Rangerettes this past school year. She's on "So You Think You Can Dance".

HAS ANYONE EXPERIENCED THIS?
Last Saturday night, I got a splitting headache in Leadville at bed time. I think it was the altitude, not drinking enough fluids, plus I had just had a huge, be prepared, BM. My head hurt so bad I was in tears. But I tried to relax and Robert talked to me soft and slowly, and it finally went away. I felt good the next day.

HOW 'BOUT THAT TUMOR MARKER
My tumor marker has gone down to about 5500 something, down from 14,000. I have "tree rings" in my fingernails - alternating white and pink. I think this represents when I've had the bigger chemo.

LEG IN PAIN
My left leg is hurting like hell today. I guess I overdid ityesterday. I had PT and she told me that on humid days, we measure the barometer with our joints and muscles. We have had some rainy days and all the PT patients have been hurting.

We also had a booth at "Taste of Ouray" last night, and I pigged out. My weight is up which is a good thing.

TRYING TO SLEEP MORE
I've been guilty of not sleeping, but I'm getting into it and taking my heavier meds at bedtime. Last night I slept 10 hours.

SORRY I'VE BEEN OUT OF TOUCH
I owe some friends packages, cards, and other correspondence. Also, I'm sorry I haven't been on the discussion group for a long time.

Just up here in Colorado, enjoying the upcoming summer. We've had hummingbirds and snow together in some weeks recently. Biscuit (my cat) and I saw a Groesbeek at the feeder the other morning.

Sincerely, Caroline

Greetings from Leadville, CO

2007-06-09T20:45:00.000-07:00

Hello Everyone!

What a great day to be alive. Robert & I are in Leadville, doing the Mining History Association Annual Meeting, and having a great time. It's beautiful here in Leadville but cold. We have had a good show - sold books, mineral specimens, mining stock certificates, and mining artifacts. We've gotten to see many friends we haven't seen in a long time at this conference. We head home tomorrow, although we're going to drive around tomorrow and see some of the mines. We've also gotten to visit a wonderful indedpendent bookstore here, The Book Lode. Thanks to Carol, the owner for meeting us for breakfast and sharing experincess. If you're in Leadville, do look up this wonderful little bookstore.

Next weekend, we have a mining artifact show in Ouray. Never a dull moment! Lots of work to catch up on before our next visit with the oncologist on Friday, June 15th. Wish me luck that my blood cells will let me have chemo. Last Wednesday was one of those days when if I could have pulled the plug, I would have. I stayed up almost all night because we had so much work to do before we left town. But we went to the physical therapist, and Lee Ann helps so much. Thanks to Peggy Lindsay for massage which has been very helpful. Colleen Hollenbeck, my home health nurse, has really helped me get my meds straight.

C.W. McCALL WAS WONDERFUL ON THE RADIO SHOW!
C. W. McCall was on my radio show last Sunday, and he was just delightful! We did record the show. Also, he is really interested in classical musical music, and won a Cleo award for advertising. He did a lot of music before he ever did Convoy in the late 70's. The school hopes to get him back for a classical music show.

I have to scoot as it is getting late for us.

Thanks everyone for your interest and support.

Sincerely, Caroline

CW McCall on my Radio Show Today

2007-06-03T07:37:00.000-07:00

I think that I will have CW McCall, singer of Convoy and ex-mayor of Ouray, on my oldies radio show at 1:00 - 4:00 pm today. The station is KURA, 98.9, Ouray, Colorado. I don't know how to stream it, but here is the info:

kara.fast-serv.com:9262/listen.pls

I think you somehow copy this and it sets your computer up to play the show.

CHEMO REPORT
My white blood cells were too low to have FULFOX this week, but I had Avastin. So I had the little chemo and not the big one. We are scheduled to go back on June 15th to try again. My white blood cells were too high to have a round of shots to boost the white blood cells. It's been a very busy week for us in Ouray (we had a book signing at the book store yesterday, plus a million other activities going on in town), so I'm glad I had this week off from chemo.

I have to scoot. Suzie, my sister and maker of my dreams coming true, was here this week and she needs to leave, so I need to get going.

More Later! Thanks everyone.

Just up here in Colorado enjoying the beautiful scenery and sunshine!

Hope all is well with everyone out there.

Sincerely, Caroline

A Quickie From Caroline

2007-05-28T22:56:00.001-07:00

Hello Everyone -

I have so much to tell everyone, but I've needed to catch up on bookkeeping, book orders, organizing new businesses, doing my film with my film class, training Robert on some bookkeeping, trying to rest, sometimes I don't have a choice - the chemo takes over.

With Suzie here next week, I hope we can post some pictures on the blog. I have so much to tell you about our trips.

A quick note to Vicki McNair and Liz Potts from Skyline High School. It was so good to see you and my dear friends Sarie and Elaine Dial. So much more to say and people to thank on our various pilgrimages.

I have to get to bed now! Oops, it's midnight. Gotta go do some mouthwash.

Just up here in Colorado, with hummingbirds and snow. The snow melted earlier this week, but I could still hear some hummingbirds. I think everyone mowed their yard this weekend after the snow melted. We got our lawnmower fixed, thanks to Elwood our employee.

Sincerely, Caroline

P.S. I think this cancer has messed with the wrong woman.

Caroline is doing ok ....

2007-05-27T09:24:00.000-07:00

Howdy ya'll - that's Texan for hello you all. This is Suzie again. Caroline is doing fine - she's off her steroid high and therefore has less energy.

I'm so happy to have my "real" little sister back. I can hear it in her voice - it's truly Caroline! I'm wondering if any of you caretakers have experienced this with your loved one. She's finally sleeping, which means Robert is getting more "good" sleep. I kept thinking about the time one of my best friends was in the midst of a horendous tragedy. We were at the hospital and my friend could not sleep or eat. The nurse told us her getting sleep was more important than her eating. I was beginning to think Robert would get up one morning and find a little pile of ashes where Caroline had finally burned out.

Caroline is getting physical therapy on her leg and she believes it is really helping, although I don't believe she can yet really use that thigh muscle. Robert said she can bend the leg a tad. She continues to have mouth and throat sores and sometimes she can't even take pills.

This is really getting her down. Caroline, as I'm sure you've come to know, has always been extremely active. She was involved in so many things and she worked at the same time. After moving to Ouray and marrying Robert, she jumped into the community with both feet. To not have energy and to feel so sick is depressing. She questions whether it's all worth it. Apparently the affects of FOLFOX are cumulative so she'll probably feel even worse after the next treatment. I'm going over on Tuesday to spend some sister time and give Robert the time to do some rockhounding. Robert is great at finding beautiful crystals. I swear, he knows everything about Colorado minerals. Caroline and Robert were a good match - both being geologists and continuing their interest and enterprise in minerals.

I'll travel to Grand Junction with Robert and Caroline next Thursday for her doctor appointment. Hopefully all the tests will give the go ahead for FOLFOX chemo. She's coming to the end of this chemo regime and we're all extremely anxious for her to take a scan and see what the FOLFOX has accomplished. Caroline and Robert have a friend who has undergone this chemo regime for a different type of cancer. He's shared his experiences while undergoing FOLFOX which has been extremely helpful to Caroline. His sharing of experiences and his support has helped her get through this.

I'd better scoot - have a million things to do before I leave on Tuesday.

You go FOLFOX ..... kill those cancer cells!

Love to all,
Suzie

Hello from Prescott, Arizona

2007-05-19T02:16:00.000-07:00

Hi ya'll, this is Suzie once again.

Caroline is doing fine - she's just really busy and has once again discovered SLEEP --- thank heavens!!!! Being on the road with her during our Gray Girls' Texas Trek, I came to truly appreciate what Robert is up against. The steriods really throw Caroline into a manic state and although she was decreasing the dose during our trip, she still fought sleep. She would be sitting on the bed in a hotel room fooling around with something in her hands and would fall asleep mid-whatever she was doing. Diane and I would tell her to get in bed and she'd say "I just need to finish this" --- and on it would go. Diane found her asleep in the bathroom one morning about 2:30 am. One morning after such a night, I made her write a letter to herself (to give to Robert to use when needed) reminding her how hard headed she is and that her caretakers need sleep even if she doesn't. I have no idea where the letter is - I'm not sure she ever delivered it to Robert. Soooo, we're thrilled she once again, at least periodically, is going to bed at a reasonable time.

She had the FOLFOX chemo this week although she had to have a blood transfusion due to her continued anemia. She told me Dr. Bergen seems to be more optimistic - he has to be as we really weren't sure she'd be here last Christmas and he told us prior to our Texas Trek that she might die in the car. He was so concerned Diane and I would be really upset with him - we told him it would be ok as Caroline would be doing something she truly wanted to do. I am so impressed with Dr. Bergen. I believe the mix of God's grace, Dr. Bergen's excellent doctoring, and Caroline's will is the reason she's still alive and living OUTLOUD.

She is continuing with her video and of course she got really behind with their businesses while out of town so much the past couple of months so she's working very hard to catch up prior to the upcoming summer season in Ouray.

As always, thank you for all of your love and support. We all need and appreciate it.

Suzie Gray West

P.S. We're thinking Caroline will be attending my 40 year high school reunion this September in Duncanville, Texas!

Quick Update on Caroline

2007-05-10T01:35:00.000-07:00

Hi all, this is Suzie, Caroline's big sister again. Al and I just returned from a week in Oregon. I spoke with Caroline briefly today and she wanted me to post and say she's doing fine but is really, really busy. Her leg continues to improve for which she's very thankful and encouraged. She is having trouble swallowing --- sores in her mouth and throat from chemo. She will see Dr. Bergen today (Friday) and then she and Robert are off to Moab with a long time friend, Dick, who lives in Grand Junction. She said she's continuing to calm down as the steroids are decreased. I spoke with Robert while we were gone and he told me she'd gotten really good sleep a couple of nights/days --- believe me, she needs it. She just goes and goes and goes --- I keep thinking she's going to burn up like a shooting star. I know they'll have a wonderful time and she'll absorb the beauty and peace of Moab.

Thank you for all your love and support of my little sister. She's a truly amazing woman and is fighting for her life.

Suzie

SO GOOD TO BE HOME

2007-04-30T20:09:00.000-07:00

Hi Everyone!

We just got home from the spring Denver Gem & Mineral Show. I have been on three trips lately and hardly been home. My family has wanted me to rest, so they've kept me away from the computer and phone. So I'm sorry I've been out of touch.

MEDICAL UPDATE
I couldn't have FOLFOX last week because my white blood cell/platelet count was too low; however, I'd been on vacation with my sisters to Texas and wasn't about to take the shots on the road. I was able to have my Avastin infusion last Wednesday.

This week, I have been on the shots to improve my white blood cell/platelet count, so hopefully, on Wednesday, I can do FOLFOX. I go in at 9:45am, they take blood, and we'll see what happens. I need to check in with them about other stuff as well.

I'm down to two steroids per day. While my feet and legs are still swelling and bruising, probably from the chemo Avastin or FOLFOX, my left leg is doing much better. I think I'm getting my muscle back. Every day it improves. I'm still using my cane (thanks Mr. Park for the four-pronger), but I'm able to move my leg more easily and with less pain. I'm starting to bend my knee a tad. I'm really excited about that. This is the issue related to radiation recall which was induced by the chemo Gemzar which I'm not on any more.

I have completely lost my hair. But it's growing back in pretty fast and I think I look good bald!

Thanks everyone for your indulgence while I have been on all these heavy medications. Some days, I don't know how long I can go on like this taking all this medication, but if I can get off the steroids, if the FOLFOX will stall the tumor growth, if I can have radioactive seeds, maybe, just maybe, there's hope for me. Sometimes, I feel like I should just die and get out of the way, not drag everyone through this. But I'm not there yet. I think there's a chance. I think there's more time for me. If there's a duty to die, I'm not ready to do my duty. Besides, the daffodils are blooming in my yard, the grass is turning green. I've just reconnected to so many good friends from the past. No, I'm not dying anytime soon.

In the mean time, I do feel myself coming off the steroid taper and calming down. I'm hoping we'll drop the dosage this week.

I do want to post more about the three trips and some photos, but again, I find myself up too late, and I need to go to bed.

While in Denver this weekend, I got to see my Denver girlfriends: Jody Curphy, Susan Asher, Darlene Ritchie, Diane King, and Marcia Karshmer. Thanks to all of you for coming down to see me at the show or meeting us for dinner. We also spent time with Robert's son Ian. We were pleased with our sales, and Robert and I both did some buying for our businesses, but we were so busy, it was hard to get out of our room. I got to see many old friends from the Denver gem & mineral community, including Sandy & Chauncey Walden who introduced me to Robert twelve years ago, and for which I am eternally grateful.

Again, thank you everyone for prayers, gifts, books, recommendations, and support. Thank you for rooting for me. You can't imagine how it helps!

Just up here in Colorado looking forward to warmer weather and staying put for a while.

Sincerely, Caroline

We saw a fox on the side of the road near Ridgway coming home tonight. Of course, there were elk and deer and lots of baby calves in the valley.

REAL GOOD NEWS!

2007-04-26T17:47:00.000-07:00

REAL GOOD NEWS!

This is Caroline' s oldest sister, Suzie. Caroline and Robert are on their way to Denver for a gem and mineral show and she asked me to post the good news.

Caroline was unable to have FOLFOX chemo yesterday due to low blood count but she was able to have an Avastin infusion. The blood work prior to chemo yesterday showed her CA19-9 tumor marker to be 5,545 --- which is down from the 14,000 range. YEA!!!!

Caroline wants to thank all of you for your love and support. I want to thank you too.

After spending 11 days with her on our Gray Girls' Texas Trek, I can tell you she is one determined woman. It is beyond me how she manages to do all she does. When she undressed the first night of our trip, I was shocked to see her leg. The leg from the knee down, the ankle, foot, and toes were all incredibly swollen and there were a number of big bruises on that leg as well as other parts of her body. I was afraid the skin on her ankle was gong to split open. Ice packs and wrapping her leg definitely helped but she said it's beginning to swell again after yesterday's Avastin infusion.

Caroline will blog again as soon as she can ---- heaven knows she'll have a lot to report!

Please continue the prayers and good thoughts for my amazing sister,

Suzie Gray West

Back Home - More Later

2007-04-24T21:32:00.000-07:00

Hi Everyone!

I just got home from the most incredible trip to Texas to "touch my roots". We saw lots of old friends, family, found our "dead people" at the Cleburne Cemetary and Laureland in Dallas.

I can't thank my sisters enough for their indulgence, patience, and laughter. All three of us had "meltdowns" where we had to bitch at each other, but hey, at this point, we are close enough to do that.

I see Dr. B tomorrow - first we haveto see where my bloodwork is at. Pray for healthy red & white blood cell counts and PLATELETS! I hope I can have my FOLFOX tomorrrow!

I will post more later about the trip with pictures.

My hair is growing back in pretty fast, so I don't think I'll completely shave my head. Thanks to AC & Jean in Texas and Margaret & the Park family for all the hats. Margaret, her daughter Taylor (my new adopted daughter), and my sisters were in a Cancer Walk in Duncanville last Saturday. (We spent 1962-1969 in Duncanville and had a great experience growing up there. ) I had to ride in a wheelchair, and my dear friend from childhood, Margaret, pushed me most of the way. It was so good to reconnect with some old friends, especially Margaret and her family.

Okay, I gotta go take some pills.

My condolences to the McCrea Family. I cannot tell you how much I will miss Valerie. She was a great inspiration to me. Also, our sympathies to the Ken McKenzie (his wife passed away this week and she as well was a real fighter and inspiration to me), Warren Doyle's family, and Mary's family from Ewe & Me in Ridgway. (Sorry I can't think of Mary's last name.)

Congratulations to new parents and grandparents: Trevor & Erin from our local bakery - a boy, their first, Catcher Easton Latta; the Swim Shop people in Ouray (Jennings, fun people to bowl against),; and Julia Gregory of Austin with her new grandbaby whose name I cannot find at the minute.

Thanks everyone for your prayers, good wishes, etc. You have been a big help!

Just up here in Colorado, glad to be home, but we should be leaving town on Thursday for the spring Gem & Mineral Show in Denver if all goes well, and I can find someone to clean my port in Denver.

Sincerely, Caroline

CHEMO RESCHEDULED DUE TO WHITE BLOOD CELL COUNT

2007-04-05T05:08:00.000-07:00

Note: This first post will be for medical update purposes. The next post will give you the juicy details of our trip to the South.

CHEMO POSTPONED UNTIL TOMORROW
I was not able to have chemo due to high white blood cell count. We're going to try again tomorrow. We did have a productive session in getting medications straightened out - what's for pain, nausea, sleep, and other side effects and the timing of when during the day to take them. Some meds address more that one side effect. My sisters were there to get informed as well, so Robert and I don't have to remember everything. It's always nourishing to my soul to be with my two sisters.

As I taper off the steroids for the pain in my left leg due to radiation myositis is coming back. I increased my dosage for the pain right after the doctors's appointment yesterday and fell asleep eating Ravioli di Portabello at the Olive Garden. (I did get about five bread sticks in before I got too sleepy.) I took a nice nap in the car and later at home. I took more pain med at bedtime and slept until about 4:00 am. I did not need a sleeping pill.

The steroids and lack of sleep really sent me into a manic state. I did not want to go to bed because I had lots of energy and creative rushes. But I also got combative as well. For those of you that have had to experience my argumentative side, I apologize. (I was in a carpool in 9th grade, and this one boy's mother would tell him, "Robert, you're so argumentive." And he would reply, "Mother, the word is argumentative and I am not." To this day, I have to look the word up to remember which spelling it really is.) I specifically apologize to Barbara Peterson and James Pettingill of the Elks for demanding a few last ads as the Elk's cookbook went to press last week to be ready in time for Fourth of July. So we will have a new, local cookbook this summer! I missed the deadline to get my recipe in, but I'm sure there will be some great ones.

We stayed with George & Glenda Moore last weekend in Marble Falls, and they were wonderful to us. George has given me lots of information and inspiriation as I go into this new FOLFOX chemo regime which he was on. We also hooked up with an old high school friend of mine, Julia Gregory, who is a naturalist for the State of Texas. We visited the Bamberger Ranch where Julia often volunteers. It is a ranch that started out very run down, and through many simple conservation techniques has been turned into a very productive operation on many levels. We were all excited about and impressed by what the Bamberger Family has done. You can get more info at their website - bambergerranch.org. I do owe an apology to the Moores as I was on the grumpy side on Sunday night. Thanks George & Glenda for putting up with me! And by the way, my friend Julia's mother (Shirley) is dating Doris Sutton's brother, and the couple may be coming for a visit this summer. I hope to get back to Austin later this month for another geololgy outing with George and Glenda.

We did managae to catch Jill Patterson for lunch in Lubbock on our drive home. I called her up and said, "Jill! I need to do a major face plant in a plate of Tex-Mex." And she so understood. So we met at El Chico. Her maternal grandmother recently passed away. My condoloscences to the Patterson Family. Jill will be working at Buckskin Booksellers this summer. I have stolen her from the Variety Store, but the Williams are still speaking to me.

MY HAIR IS FALLING OUT
Okay, it's finally happening. My hair is coming out in clumps. No, I don't really want to lose my hair, but then again, consider the possiblities. When they made the first Star Trek movie and they had that bald, gorgeous V-ger woman, I said "That's the planet I want to be from." I've always wanted to be a Vulcan. I already have the ears. Really. I wanted to wear them to bowling with my Quark Bar bowling shirt, but I never had the time to get them glued on. So if you see me around town with pointy ears. . .

TUMORS, LOTS OF TUMORS
After my last scan they counted about 12 tumors in my liver, four to six of which look troublesome including one on the left side which has had little or no tumors. Some of the tumors have "daughters". The biggest ones have not grown thtat much.

We are hoping the FOLFOX will halt or slow down the tumor growth. We also plan to look into some other procedures at Anschutz Center at CU.

In the mean time, I am enjoying life. Another spring for me. Seeing old friends, making amends, and planning for one crazy funeral to go out in style.

But I still say, tumors, hairballs, who cares. I really don't plan to leave until I'm ready. Not sure I get to choose, but I think God, the universe, or whatever you believe in is going to give me more time than the doctors think. Besides, I want to channel Verena Jacobson one more time for the Ouray County Historical Society's "Vignettes of History" to be staged this fall in Montrose.

Just up here in Colorado watching the sun go in and out of the clouds and having my sisters here. God bless us all.

Sincerely, Caroline

P.S. Thank you Diane King for sending the box of Smooth Move tea.

And thanks to Dorothy Davis from my cancer support group in GJ who came by to see me at the cancer center yesterday. Her family owned the Wiesbaden at one time.

Home from Our Trip South

2007-04-04T01:46:00.000-07:00

As it is late, I'm just going to say at this point that we had a really wonderful trip to Mississippi and Texas. We got home last night about 2am.

My sisters Suzie & Diane arrived from Prescott today. We will be seeing Dr. Bergen tomorrow to discuss various plans and to get my second chemo on the FOLFOX pump. I will have physical therapy on Friday and am checking in with my local doctor as well. A home health nurse will be in charge of flushing my port.

I'm tapering off the steroids which will make life easier for everyone. My leg is starting to hurt as I'm tapering off, so we are concerned about that. The leg pain is from the radiation recall, not cancer or any other treatment.

Just up here in Colorado, headed to bed.

Thanks again for prayers and so forth.

Sincerely, Caroline

WE'RE GOING TO (CLAP) PUMP YOU UP!

2007-03-19T23:40:00.000-07:00

MEDICAL UPDATE - NEW CHEMO COCKTAIL

Okay, I'm on the pump! (I call it Hanz-Franz.) It makes a little "zzzt" noise every now and then. It's comforting in some weird way. It's pumping 5FU into me which is the same as Xeloda that I took in pill form previously. I also had some minerals and folic acid and for the first time, Oxaliplatin. I was to have Avastin, too, but I just had it 9 days ago and couldn't have it again today. I hope Dr. B doesn't think I wanted FOLFOX just so I could have a bag to accessorize.

I saw Dr. Kane last Monday in Montrose, and she wanted me to go on this regime. It's worked really well on our friend George Moore who has colon cancer. (We will stop and see George & Glenda in Texas on our way home from our trip.) Dr. B says he's not so sure FOLFOX worked as well on cholangio, but I wanted to try it out and he's agreeable. The Gemzar is probably going to induce the radiation recall and pain. I do have some cramping in my feet. Any cholangio patients out there with stories of FOLFOX, good or bad? I'm all ears.

I have a CT-scan on Wednesday in GJ and will get the pump taken off then and flushed. This "pulling the plug" on the pump after 46 hours is critical in that it has to be flushed by the right people. In the future, I'll probably go to Mountain Medical in Ridgway for flushing. It'll be good to see those folks again.

I was on the ceiling today at Dr. B's office from the steroids. He and Amy his nurse had just gotten back from vacation. (Amy rode the big roller coaster for me at Disneyworld and screamed! I hope to get to Elitch Gardens in Denver this spring - Jody are you listening? Water World maybe when it gets warmer.) I was too busy being the village idiot to remember to call the insurance company last week and get pre-authorization for this new treatment, but we were able to handle it this morning. I had to be a pain in the ass to several people to get it done. Not the smoothest of mornings, but it'll be better next time. Robert missed City Council meeting. I wanted to go tonight as they were talking about going "Home Rule". As former City Treasurer, I would like to see this passed. I also wanted to encourage a party to sweep Main Street.

SOME REQUESTS FROM ME
This chemo will give me fatigue, nausea, and diarrhea. But I figure that's no reason to lie in bed and complain. You may see me out, but if I run in the bathroom all the sudden, you'll understand.

Also, if I am sleeping, I will try to remember to disconnect the phone. If I answer and I am groggy, just bear with me. If I need to go back to sleep I'll tell you. But sometimes it's good to have people to talk to. If anyone wants to come over and watch TV when I'm in those slow times, just holler. It might give Robert a break, and it'd be your day to watch me. I do have to more sensitive to infection now.

Two favors to ask everyone. Please do not send me jokes or unnecessary, sweet, little e-mails. My in-box is overflowing. Yes, they're nice, but I don't have time to read them or even figure out if I need to read them. I do love to get cards/post cards in the mail - P.O. Box 1884, Ouray, CO 81427. I think the art of letter writing has been lost.

Two, if you call, would you leave your number on the answering machine. You may save me a trip to walk in the other room. My legs really cramp up sometimes.

NO BLUE BELL!
I will also experience neuropathy (sp?) which is a side effect where you can't drink or have cold drinks, etc. I can't have ice cream for five days. At first I thought, Carol the infusion nurse (one of my favorites) said no ice cream ever again. I was especially bummed, as we are going south where they have "Blue Bell, the best ice cream in the country!" But it's just for five days. Little Creamery in Brenham, here I come.

Just up here in Colorado, not being a "girly-girl". I've got Hanz/Franz on my side.

Thanks you for your prayers. I pray fo us all.

Okay, I gotta to go take a pill.

Sincerly, Caroline

I may have cancer, but I'm having a good time!

SLEDDING EGGS

2007-03-15T20:49:00.000-07:00

Okay, I have much to update on the medical side, but I just have to tell this story first. This is that rich moment I mentioned in last Saturday's post - a lot of frustration came to a head for me.

I am losing some mobility in my left leg from the radiation on my hip bone. I don't really care, since my bone scan came back clear, and there's no sign of cancer. Since I'm on the steroids, I don't have any pain right now, but I've got pain meds as a back up when I'm off the steroids. If you watch the TV show, House, I sort of limp around like him and use a cane some. (If you don't watch House, you should. It's one of the best shows on TV. I'm totally hooked.) I even have a handicap sticker now for the car. What's really funny is we'll go someplace that has ten handicap places out front, and Robert will still park in the closest non-handicap place. And I'm like, park in the friggin' handicap spot - after all I've been through!

Things have really melted out in Ouray snow-wise, except of course, our front yard and the path to the car. I can get around town except for the first twenty feet outsdie my front door. It's slick, icy, on a hill, and I'm just terrified of falling. So last week, I had to come and go from the back door which we never use. It took me an hour to even find a key to that door, but I did find it.

So anyway, we had this major shopping expedition in Grand Junction last Friday after having chemo. We did Office Depot, PetSmart, Target, Vitamin Cottage, Michael's MJ Design, JoAnn's, Great Harvest Bread Company, and City Market (grocery store). Here I am "Miss Shop Local" hitting all the big box stores hoping I wouldn't run into anyone from Ouray, but hey, we'd already spent the gas money to get there. (We were back in GJ last Tuesday, and I shopped at several cool, independent places, which I'll report on later.) So many times after chemo Robert will say, do you want to stop here or there, and I'll say, let's just go home, I'm tired. Besides, we can get that stuff at home. I do usually have him stop for a dip cone at DQ.

So we had all this stuff to carry in on Friday night from the car. I just can't negotiate the yard, and I was feeling too impatient to have Robert back up the neighbor's driveway to go in the back door. Robert's telling me, don't worry, just let me get everything. I said I'll get the eggs - they're light. I was feeling so frustrated that I couldn't just grab bags and go up the hill as usual. I stomped up the neighbor's driveway and decided to cut across the deep snow in our yard on a lateral traverse. Well, the snow is knee deep, very stiff, and crunchy. It grabbed me and I just went over forward. I thought, Oh God, there go the eggs. It's all I have to handle, and I'm going to blow it. And in one of those slow motion kind of moments, the eggs went flying out of my arms. I thought they'll land in the snow and sink. But no, the surface of the snow is so hard, they went sliding down the hill. I thought, "Oh shit, they're organic and they cost an extra dollar." But the package for organic eggs has like these two double plastic layers, and they sledded down the hill and stopped. They didn't break.

Somehow, this made me feel like maybe I'm going to live longer than we all thought. I thought to myself, quit waiting to die, Caroline.

So I'm on steroids and I'm just going ninety miles an hour. I'm sure I'm driving people crazy, but I tell them I'm on drugs, and I'm not offended if they tell me I'm acting weird. It's kind of fun to go around a be the village idiot. My hands shake and sometimes I have the worst gas in the world, but I've decided this is no reason to just stay home in bed.

I met with two students from the film class today and we're going to start on a film to play at my funeral. I decided to start my planning funeral as I have too many control issues to let someone else do it. I figure if I'm ready, it won't happen. We've got the headstone thing done. I'll be doing a whole post on the plans later on. I AM SO JAZZED ABOUT DOING THIS FILM THING WITH THE SCHOOL! Thank you Nancy Nixon.

Last Sunday night we went to Tom & Linda Tyler's house for dinner. Jim & Chandriee Davis were in town from Estes Park and staying there. Jim used to work at the bookstore, and Chandriee & I worked at First National Bank together plus overlapped some at the Pinon Restaurant. (It's a small-town thing - you have these people you end up working with at different places.) Remind to tell you about setting my bangs on fire at the Pinon doing bananas foster.

Tuesday night, after another long day in GJ to see the doctor, we managed to go to the Elks and watch my team bowl. I've had to give up bowling for now, but I might be able to do it on an adaptive basis later on. (Or this leg thing may go away altogether - we don't know yet.) My team with Linda Tyler was bowling her husband's team with Tom Tyler. Plus Tom's team now has Warren Ruby, Ray Markey, and Phil Martinez - what a hoot. Bobby Morss has replaced me on The Harem. Thanks Bobby! You're a good fit for the girls.

Tonight, I did the silent auction for a joint fundraiser for the Mountain Rescue Team and the Museum. So last night, I stayed late at the bookstore late doing some cleaning and pulling some dead inventory for the auction. I put on the Beatles new Love CD from the Cirque de Soliel show (which is awesome) and cranked it up. I had this wonderful woman shopping in the store named Rudi, and we had fun talking. There's nothing like good music to get stuff done and some good girl conversation to boot.

Tonight, at the fundraiser, the crowd indulged me and let me auction some things at the verbal auction, and tell few stories. We were at the Western Hotel which used to house the Buen Tiempo, a very popular Mexican Restaurant where I moonlighted one winter (while I was City Treasurer!). I told you I was a workaholic.

I told a story about the night I had the whole back room at the Buen with like a 16-top, 10-top, 8 top, 6-top, and about ten other tables with no less than four at each. It was a Thursday night in the winter and we got slammed with a skeleton crew. No busser, rookie hostess, one bartender, manager's night off, second back-room waitress was a no-show. The waitress from the bar said you're on your own. Talk about dying and going to waitress hell. I thought, I can cry and give bad service, or smile and give bad service. So I smiled. I told people that we were in a crisis situation. I said get your shit together and be ready, cause I won't be back to your table for about 15 - 30 minutes. Nobody left, but I had a bunch of drink orders get cancelled.

MY NEXT PROJECT
Main Street is really full of gravel and dust currently which is driving us shop-owners nuts. Since Main Street is actually Highway 550, CDOT should maintain it, but they never do the sweeping. I keep telling my City Councilman husband will you please get Public Works to sweep the street. It looks like hell and someone could slip on the gravel. The street sweeper is broken at the City, and they're trying to get another town to come do it one day. I'm thinking that since I'm on steroids I'm just gonna go do it myself!

So I'm just up here in Colorado having a grand old time. I may have cancer, but I'm very happy. Life is good. I'm not leaving this earth until I'm ready. I've been talking to my liver, and I think I've got her on my side. (I've named my liver Luvera after a very special person in my life.) And I've been cussing those tumors out and told them they're not welcome anymore.

Thanks for keeping me alive with your prayers. Based on what the doctors tell me sometimes, that must be why I'm still here.

Sincerely, Caroline

P.S . The verbal auction brought in most the money, although we got about $300 on the silent auction. I feel good about that.

BE CARREFUL WHAT YOU WISH FOR!

2007-03-10T11:04:00.000-08:00

Having cancer is not all bad. There are some up-sides. Whenever someone asked you what would you wish for if you had that Genie from the bottle, did you say something like win the lottery? Or for one wild impetuous night, to be the meat in an Antonio Banderas - Benecio Del Toro love sandwich. (Just kidding, my husband is all I can handle.) Or to be able to eat anything you want and not gain weight.

As I have said in the past, I spent most of my adult life dieting, mostly on Weight Watchers, and now, I can eat anything I want and not really gain weight. (I actually worked for Weight Watchers twice as a group leader.) I've been pretty lucky holding my weight stable. I've read that many cancer patients die of malnutrition rather than the cancer itself as they start losing weight.

Sometimes I don't have a big appetite, but I manage to get some calories in there somehow. I do "reverse Weight Watchers". Lots of bread. I have ice cream almost every night. Last night, we went to a Chinese buffet in Montrose on our way home from chemo. Usually, we choose that restaurant because I have been queasy and I get soup, rice, and one of the blander dishes with vegetables. They usually make money off me, but not last night. I went to every table and had something off each one. God, it was good! They had crab legs with drawn butter. I hadn't felt like fish or seafood in so long.

ANOTHER WISH COME TRUE
I used to be so busy and just enjoy accomplishing things, that it really pissed me off that I had to sleep at night. Well, not anymore. I can stay up all night. I do try to lie down and be still for a few hours and sometimes I do sleep. (By the way, in my last post, the reason I didn't go to sleep that night is that I took an Oxycodone instead of an Ambien CR by mistake.) A friend of mine told me that the CR makes her have wild dreams like me, but the regular Ambien works better. Does anyone have an opinion on this? Yep, I was a work-aholic. Maybe that's what gave me cancer. In addition to eating fiber, be sure to get your down time. I get lots of it now, and I'm relishing my leisure.

GOTTA RUN - MORE LATER ABOUT YESTERDAY'S CHEMO APPOINTMENT!
I just looked at the time and realized I need to get to the bookstore. Elwood is working today and I told him it's his day to "watch me". Robert & a friend went rockhounding in the "west end" of Montrose County today - a much needed respite for him I'm sure. Nothing makes him happier than to go dig for rocks and commune with nature.

I told Robert yesterday morning that if I was babbling on and driving him crazy, just to tell me, and I'd be quiet 'cause we know it's the steroids. I don't get offended - I know it's the meds and I know it's a good thing for him to ask me to time out. He did do this several times yesterday. As I get older, I don't like to listen anyone rattle on too long about anything, but when I was a younger woman, boy, could I blab my face off. (Just ask my ex, Lance.) I still have some girlfriends with which I have very productive blab-fests, but I don't like to talk like I did when I was younger, and I think that's a good thing - no more verbal diarrhea. I guess we do grow up.

Okay, gotta scoot. More later. Love ya. Bye!

Oh, I did have a rich moment last night that I have to tell you about. Later.

Just up here in Colorado, enjoying my steroids, but I will be glad to sleep again. Dr. Bergen said it was okay not to take the sleeping med. He said no one ever died from insomnia. (I guess unless you fell asleep at the wheel. But Robert said if you fell asleep it wouldn't be insomnia.)

Sincerely, Caroline

The Joy of Steroids

2007-03-06T03:34:00.000-08:00

LEG GRADUALLY DOING BETTER
Boy, am I feeling better since I got back on daily steroids last week! I am definitely alive and almost kicking. Unfortunately, I do still have pain in my left leg, and I've had to give up bowling, at least for now. Better no new cancer and no bowling than the alternative. I can get around pretty good, but I can't entirely bend my thigh. I can carefully get down on the floor and back up if necessary. With the energy from the steroids, I am moving around a lot, which causes the leg to swell some. I had to spend some time this evening with the frozen peas on it (which makes a great ice pack). I am doing more in one hour now than I was doing all day before when I had so much fatigue.

I took one Ibuprofen today, but it didn't do anything. Guess it's gotta be two. I haven't used the Oxycodone since last Fridy due to the plugging up it causes. Sorry if my last post had too much information on constipation, but this blog is for other cholangio sufferers, and I think my candor can be helpful. However, I'll try to be less descriptive. "Pooty" problems come with the territory of cancer - all the best drugs either stop you up or cause the inverse.

We see Dr. Bergen this Friday to see if I can have chemo this week. Also, I see Dr. Kane from CU Med Center of Denver at the Montrose Oncology Center next Monday, just to check on any new procedures that might be available.

HOUSE PROJECTS
I'm having such better days. It's so nice to feel good again. I worked on cleaning our kitchen and frig last weekend, even rearranging the photos and magnets covering the refrigerator doors. Cleaning the kitchen causes one to think of so many people. So & so brought me this magnet from their vacation. This utensil was a Christmas present from a relative and I couldn't live without it. I rememer when I bought this bowl twenty years ago at the craft fair. So many wonderful memories you can hold in your hand. Anyway, we had quite a food museum going in the frig and the back reaches of some cupboards, and I am proud of my progess. We eat almost entirely at home now, so the kitchen needed to be put in order.

Before I got back on steroids, I took down the Christmas tree around February 24th. I know this will horrify some people, but we put our tree up really late, like on Christmas Eve, so if I get it down by Valentine's Day, I think I'm doing pretty good. (When I used to work so much, Easter was my goal.) I put the ornamnents in zip-loc bags with notes about where I think they all came from, like "I got this batch of ornaments in December 1993 when I was divorced and living in Denver. I bought all my gas that month at 7-11 to collect all five of these". I left a note at the top of the Christmas ornament box for Robert and Ian. I told them that based on the way I felt that day, I couldn't imagine still being alive at Christmas, and wished them love and Merry Christmas. But you know, I have new hope. Maybe I will make one more holiday.

PET SCANS, BODYWORKS
Last November when we drove to Las Vegas to spend time with my sisters, I picked up a Salt Lake City newspaper in Green River, Wyoming. (Mostly I was reading about the Jeffreys case.) But I noticed an ad for a PT Scan for about $650 at a hospital in SLC. My advice is that if you can afford it, get one, even if your insurance won't pay for it. It is like a low resolution CT scan of your whole body. And unfortunately, many things don't show up until it's too late. At least consider an ultrasound on your liver.

I can't remember if I mentioned this in the blog before or not, but while I was in Arizona in February, my sisters and I went to see the Bodyworks 3 exhibition in Phoenix. I was really afraid my sisters would get squeamish, but I was the one who had trouble looking at everything, It was very interesting and helpful to me. I got to see many livers with tumors. Some were cross-sections, one display had a torso of organs with an enlarged liver. I also got to see the vascular system of the liver which is an incredible looking tangle of wires. I may consider seeding in my arteries, but I don't know how they're ever sure if they're sending the seeds to the right place. They do arterial mapping. The night after I saw the exhibit, I dreamed that my liver had enlarged and I woke up looking pregnant. In the dream, I was yelling, "I have to call Dr. Bergen!"

INSOMNIA
Well, the down side to steroids is not sleeping. I took an Ambien CR at midnight and it's now 5:20 am and I just can't go to sleep. The brain is in high gear. I used to be like this all the time when I was working - toss & turn, worry about stuff, make lists, etc. The last two nights, the Ambien worked better although I only slept about six hours yesterday evening. Usually it knocks me out for 8 to 10 hours. I'm on six dexamethasone a day, and I think I need to try to get them into my body earlier in the day. Last night, I took a bunch of meds right at bed time. I read an article on Johnny Depp from a 2003 GQ that I'd been saving to read and finally got around to. When I fell asleep last night, I was seeing these tall, thin, black & white zombie cartoons like something out of a Tim Burton movie. But they didn't scare me. They were friendly and got sparkly when I talked to them. But I kept tossing in my sleep and telling them to go away.

It's a wild ride on the medications sometimes. Or maybe it's the pooty problems. I'm full of gas these days - fartin' like a jack-rabbit. I'm not sure what that means, but I think it has something to do with how they hop.

Just up here in Colorado, very glad to be alive despite the ups and downs. I love this world and I'm not ready to leave yet. Thanks for all your prayers.

Sincerely, Caroline

Can You Say Radiation Myositis?

2007-03-02T22:07:00.000-08:00

I'm sorry I haven't posted more, but I have really been laid up this week, mostly with pain in my left leg in the area where I had radiation. I've also had the worst constipation I've ever experienced, despite taking stool softeners, laxatives, eating prunes, drinking fluids. I was reluctant to take my pain medication, Oxycodone, as it causes the constipation. I was getting cramps from the laxatives and had intense bloating (you know how cranky that makes us gals). I had been told to take Ibuprofen sparingly and try to stay off it for one or two days a week.

Last night I was in tears on the toilet. I had not shat for four days. My leg hurt so bad that Robert had to help me get up and downstairs and into bed by picking up my leg up for me. I took some Ibuprofen early in the day even though it was supposed to be a day off, but it had already worn off. I cried to my husband Robert, "I'm in so much pain I can barely walk, and I'm full of sh_t!" So he gave me some more Ibuprofen, and we found a solution (by Mr. Fleet) to move the concrete lodged somewhere in my intestines. I was grateful we didn't have to use dynamite!

I had an MRI today in Grand Junction, the first one I've ever had. We found the cause of the leg pain, which is very rare - "radiation myositis" induced by recall phenomenon. Apparently, gemcitabine (Gemzar) can cause a recall reaction of radiation side effects, even ones not experienced during the radiation itself. Dr. Bergen said there was a remote possibility I'd get the radiation sunburn once I started back on Gemzar. (I didn't ever get the radiation "burn, nor sore muscles.) There have been so few cases of the inflamed muscles from radiation recall, they're not exactly sure how to treat it. I'm going back on steroids to reduce inflammation. (Look out, Robert, I'll want to work on 17 projects at once, plus rearrange all the furniture in the house.) I can stay with the Oxycodone and have a new Rx for a different laxative. And I can stay on Ibuprofen as described above.

Needless to say, we were so relieved today to find out that the pain was not the result of the cancer spreading. Dr. Bergen and Nurse Amy were very happy. I had been feeling so bad physically that I was afraid/depressed that I'd never pull out of it, but now I have hope again. We are planning to go on a trip later this month to a book show in Austin, Texas and to see Robert's family in Mississippi, and I think we'll be able to do that now.

I didn't bowl this week, and it looks like I may have to give that up. The pain really came on last weekend after I bowled on Friday night.

So that is it for now. Thank you, God! I'm going to try to get some sleep despite getting an infusion of steroids in my port today. Thanks to my husband Robert who has taken such good care of me when I've been so incapacitate these past few weeks. You rock, honey!

Just up here in Colorado looking forward to Spring!

Sincerely, Caroline

Left Leg Really Hurts Today - No Radio Show

2007-02-25T07:58:00.000-08:00

I have a pain in my upper left thigh that seems to be in the muscle. It really hurts today. I think it is from the chemo because sometimes my right thigh hurts, too. I think I'll just plan to stay in today. I don't want to risk falling on any snow or ice. So, no radio show today. We're keeping any eye on this for a while. I may have to have another scan to see what it might be. So many pains come and go, but this one is starting to hang on.

I did bowl on Friday night. I had steroids the day before so the pain in my leg was much less and I took some Ibuprofen. This is a "No-Tap" league, so if you hit nine pins on the first ball, it counts as a strike. I bowled 107, 131, and 151. My average is 130 and handicap is 50. We lost three of four games. If this leg doesn't get better, I may have to give the bowling up. My team member Peggy Lindsay bowled a 218 in the last game, and it wasn't all nine-pin strikes. Way to go Peg!

Guess that's it for today. As always, thanks everyone for your prayers and kind thoughts. My eternal thanks to my husband Robert who is so good to me. And some special love out to my cousin Barbara in Nebraska who just had surgery on her lymph nodes.

Just up here in Colorado, nursing a sore leg.

Sincerely, Caroline

Steroids - They're Not Just for Athletes Anymore

2007-02-23T09:50:00.000-08:00

Apologies again for not posting more often, but I felt pretty crummy this past week - mostly fatigue and pain, mostly in my left thigh which made it hard to walk. I've also had a cold, queasiness/nausea, insomnia, digestive issues, headaches, and chemo brain which makes it hard to concentrate or focus sometimes. That in turn makes me frustrated and irritable, but I tell myself to take it slower. I had chemo yesterday, and I got the attendant steroids beforehand which has made the pain in my leg better and given me more energy. So I'm feeling better today just in time for my first bowling night in the new league. Both Dr. Bergen and Dr. Oldroyd have told me it's okay to bowl.

I took some Provigil last Monday afternoon to help with fatigue and I didn't got to sleep until 7am the next morning. (I watched three movies, two HBO specials on prostitutes, and did three Kakuro puzzles.) I had an appointment Tuesday with the radiation oncologist, so I got about one hour of sleep the night before, but lately I've been sleeping very soundly, even with the steroids yesterday. Dr. Oldroyd said my last bone scan showed no more cancer in my bones, so we are very happy about that.

CHEMO TREATMENTS
I had chemo a week ago today and then again yesterday. Last Friday, my blood work was pretty good, hemoglobin at 12, but two liver enzymes a bit elevated. I only had Gemzar last week. CA19-9 tumor marker back up to 2900+. last week, but down to 2346 this week. Yesterday, I had Gemzar and Avastin, plus an Aranesp shot - my hemoglobin fell to 11.3. Only one liver enzyme was elevated. My weight and blood pressure have been good at all check-ups.

Last Friday, we went to see Norbitt on the way home in Montrose. We called Art & Brenda Fox and they met us at the theater. We went to Garlic Mike's in Montrose afterwards and it was very good. Norbitt was pretty good, and I love Eddie Murphy movies where he does multiple rolls. Coming to American and The Nutty Professor were better in my opinion. (I laughed so hard at the opening scene of The Nutty Professor that I sucked down a Milk-Dud and I thought Robert was going to have to do the Heimlich on me.) If you have seen the previews for Norbitt, you know that Norbitt's wife is a very big girl. She often accuses Norbitt of moving the seat forward in her car as she honks the horn with her boobs. Last Saturday, long-legged Robert drove my car after short-legged me. He accused me of moving the seat up, imitating Norbitt's wife. I replied, "Okay, Robert, let's see you honk the horn with those man titties."

I don't have to have chemo next week. Dr. Bergen wants to give me a break from Gemzar. I will continue to take Xeloda as long as my feet and hands aren't swelling too much.

Every time we go to Grand Junction, we usually see at least one bald eagle along the way either along the river in Ridgway or up near Colona on the Ouray-Montrose county line. Last week we saw a bunch prairie dogs up near Grand Junction. Last Saturday, we went to Ridgway to the pharmacy and saw a sheep sleeping on a picnic table at a house near Ridgway. The ground was full of snow and I'm sure the the brown table was warm from the sun.

MANAGING CHEMO SIDE EFFECTS
Chemo Brain - I asked Dr. Bergen last Friday if there really was such a thing as Chemo Brain. He said yes there is, and it is his fault for giving it to me. He thought there might be a clinical trial I could get into with regard to chemo brain, but it was closed. He said I could take ginko if I wanted. I took one last Saturday, but it didn't seem to do anything. Then I noticed that bottle was about 3 years beyond it's expiration date. I got a new bottle and will try again next time it comes up.

Fatigue - I mentioned before the Provigil which I will probably try again at half dose and only take in the morning. There's a clinical trial to test Provigil in helping with fatigue from chemo, but I had already taken some samples that I got earlier in the year, so I am not eligible for that trial. But any of you cancer patients out there suffering from chemo fatigue, ask your oncologist about it or go online to clinicaltrials.gov.

Pain/Headaches - I've been taking Ibuprofen which seems to help, but I can only take so much of it. I also take Oxycodone which can make you extremely constipated. I'd forgotten to take the stool softeners with it, and I'll never do that again. (If we can put a man on the moon, why can't we make a toilet that accommodates the largest human turd?) When I have chemo and get steroids, it reduces the pain I have in various places - thighs, shoulders, abdomen, headache, back of neck.

Queasiness/Nausea - Mostly, I am just queasy, but sometimes it feels like it's going to get worse. I've been taking Kytril. I also take Prilosec which seems to help as well.

We rented two movies at Blockbuster and watched Babel the other night which was quite good. I watched most of Half Nelson and Ryan Gosling is very deserving of his best actor nomination. Of course, we'll be watching the Oscars on Sunday night. I am hooked on American Idol. The girls are way better than the guys this year. I think Lakisha will take it - what a voice.

I sometimes feel like two different people - the girl on steroids and the woman who can hardly get out of bed. I asked Robert if he felt like he was married to two different women, and he replied, "At least."

Just up here in Colorado, both of me still enjoying life.

Sincerely, Caroline

P.S. To stream my radio show on the internet, go to kara.fast-serv.com:9262/listen.pls. I do not know how to use this yet, but I'll find out. I should be doing my show this Sunday from 1:00 - 4:00 pm Mountain Time. Sometimes I run a few minutes late to the station.

Good News

2007-02-15T19:10:00.000-08:00

The oncology nurse called today and said my bone scan was okay. My tumor marker was down to 2,361. It was 2900+ on 1-18-07. Normal is 0 -37, but at least it is trending downward. By the way, I did have a chest X-ray last week to see if I had fluid build-up, but none was detected.

I have chemo tomorrow afternoon in Grand Junction. I only have to have Gemzar. We hope to go bowling after chemo if I'm feeling up to it. We may take in a movie afterwards or instead of bowling.

My energy level is better today. Not normal, but better than it's been. I think having three drugs infused last week plus going back on Xeloda did me in this week.

My bowling team has its first game on Friday, February 23rd. We lost our only male member, Mike Wage, who has been replaced by a woman named Beth. I think we are the only all female team in this league. We're truly "The Harem" this time around.

Thanks again to so many people who have sent thoughts, prayers, good wishes, card, e-mails, phone calls, etc. I really appreciate your support.

Just up here in Colorado getting psyched for the next round of bowling.

Sincerely, Caroline

Happy Valentine's Day!

2007-02-14T15:33:00.000-08:00

Sorry I haven't posted in a while. I have been feeling rather crummy lately, with the exception of last weekend when I had "steroid energy" from my chemo last Friday. I worked in the store on Saturday and part of Sunday. Robert said I was driving him crazy. "Let's move these books over here. Let's re-do this window. Let's move these books to the front of the store. Let's get this stuff out from behind the counter." And so on. He'd been chopping wood, shoveling the deck, helping a friend move her artwork into the old Sandman space, and he was tired. So I said, okay, just move this one set of books and I'll be happy.

I did my radio show on Sunday and have info on how to "stream" it on your computer. I hope to put that in the "dashboard" of this blog, but I want to test it out first.

Okay, so let me catch things up. We got home from Tucson a week ago yesterday on Feb. 6th. I've still been fighting a cold or sinus infection, plus I have been really tired. A pain started in my left shoulder a week ago today. I would take one dose of Ibuprofen during the day, but my oncologist has warned me not to take too much Ibuprofen. So if I just lay still in bed after the Ibuprofen wore off, I wouldn't feel any pain. I've been taking Oxycodone at bedtime. The pain is getting better.

I had a triple shot of chemo last Friday: Gemzar, Avastin, and the bone hardener, Zometa. I'd also been able to stay on my oral chemo Xeloda pretty consistently while down in Tucson, but since I started back on Gemzar, it seems to intensify the Xeloda's side effects of swollen feet and hands. I started back on the Xeloda today after being off for about three days.

I now have a hernia. Apparently, at a spot along the inner incision from my surgery in late 2005, I've developed an opening or hole. Dr. Bergen says there is a very small chance that my intestines could pop through. Oh joy. I hope this doesn't interfere with my bowling.

Additionally, I'm having pain further down in my right abdomen along the inner incision. Hope there are no more hernias down there. My thighs have been aching as well. I don't know if that's muscle or bone pain. Usually, if the pain is in both limbs or has some "symmetry" to it, then it's from chemo. My left hip continues to hurt, but just slightly. I sure hope the radiation last November took care of all the cancer in my bone. This could really mess up my bowling if I have to have more radiation for cancer in my hip or thigh. I'll know more later this week.

The last few days I've been rather queasy. I need to break out some of the stronger nausea meds. The papaya enzymes aren't cutting it. I had been taking Prilosec daily for nausea which seemed to help. Then I wasn't having any nausea anymore so I quit. Guess I better get back on that again, too.

I told Dr. Bergen about the pain in my shoulder, and he ordered a bone scan which I had Monday in Grand Junction. I haven't heard any results yet from the scan. I see Dr. Bergen again on Friday, plus I see Dr. Oldroyd (radiation oncologist) next Tuesday in Montrose to follow up with the radiation on my hip.

On the positive side, my bloodwork was pretty good last Friday. One liver enzyme was slightly elevated. Albumen a little low. Weight steady - 64.8 kilograms. Hemoglobin at 12.0 which means I'm slightly anemic, but that's to be expected from the chemo. I need to call and get my tumor marker results.

Our "No-Tap" bowling league is supposed to start next week. I hope I'm up to bowling again. Robert and I were going to go bowling on Monday in Grand Junction at this beautiful, new bowling center, but I had fallen into my chemo slump and just didn't have the energy. Maybe we'll try on Friday night.

So anyway, I've been under the weather and dealing with chemo side effects or possibly the cancer spreading to other places. I've been watching TV more than usual and am hooked on House, American Idol, My Name Is Earl, 30 Rock, but the last two nights I watched the Westminster dog show. I would love to have a dog - haven't had one since the 70's - but our cats would go nuts, and we're really not set up for a dog at this point. Biscuit gained some weight while we were out of town. I may have gotten the hernia from picking her up! When we got home that Tuesday night from Tucson, she was at the front door wanting to be held and she's barely let me put her down since. I've also become addicted to Kakuro which is a number crossword kind of like Sudoku. When I have energy or am feeling good, I try to get work done. If I'm lying down waiting for a pain or nausea to pass, I will do Sudoku, Kakuro or watch TV.

It's been snowing the last two days, more than what I think they expected.

I may be doing a short documentary with the local school on cholangiocarcinoma or perhaps on having cancer in general. They have a film class at Ouray School which I think is fantastic, and I'd love to work with them.

I hope this finds everyone well, having a good Valentine's Day. I need to send some special love to my cousins in Florida (Nancy, Nita, Donald, and Pam). Their mother, my lovely Aunt Jean, passed away this morning after battling several illnesses for some time.

Just up here in Colorado feeling like I'm literally coming apart at the seams, taking a million different pills, and telling myself, "Ride it out, Caroline! Embrace those meds!"

Sincerely, Caroline

Greetings from Arizona

2007-02-01T20:54:00.000-08:00

I had chemo early on January 24th, and we left Grand Junction about noon for Arizona. We drove through Utah - Moab, Monticello, Blanding, Bluff, Monument Valley. We got to my sister's house in Prescott at 9:00 p.m. It was nice to drive through the canyon country.

My bloodwork was about the same as at the previous chemo - slightly anemic and platelets a little low. I had been battling a cold which I seem to have given to several other people. It got much worse once we got to Tucson which is probably from the chemo knocking my resistance down. I felt pretty good on Thursday, probably from the steroids I got at chemo the day before. But Friday, I had the full blown side effects - I was freezing cold and could not get warm. My doctor called in a prescription of antibiotics for me, and I have gradually been getting better. I'm still blowing my nose a lot and going through Kleenex like crazy.

Robert & I were open for business starting last Friday at the Inn Suites in Tucson (room 160) with our new business, ColoradoMinerals.com. The show has been going fairly well for us. My sisters came down from Prescott on Tuesday and brought me back home with them. We were going to drive to the south rim of the Grand Canyon yesterday, but it was snowing, and with me still fighting the cold, we thought it would be better to stay home. Today, they made me stay in bed all day, as I am going back to Tucson tomorrow. I finished an autobiography by Donovan, the singer from the 1960's, which was quite interesting. We plan to stop in Phoenix tomorrow and see the Bodyworks-3 exhibit. I want to see what the liver looks like. I hope I can see the bile ducts as well.

We have closed Robert's shop the Sandman in Ouray. We both had raging colds the week before we left, and we couldn't get everything out of the shop before we left town. So we are indebted to our employees Elwood and Rick for moving the last things out of the space for us.

Our space is being taken over by an artist in Ouray named Susan Snodgrass. We love her work and wish her well with her new studio and gallery.

Just down in Arizona, blowing the old honker and enjoying the company of my sisters, my brother-in-law Al, their dog Mac and their two cats.

Sincerely,
Caroline

I Kind of Know How New Orleans Feels

2007-01-22T17:29:00.000-08:00

New Orleans got hit by Katrina in September 2005, and about a month later, I found out I had a tumor the size of a citrus fruit. We're both recovering, not sure we'll make it, but we want to. New Orleans didn't make the Super Bowl, and my bowling team didn't get first place, but we did take second!

It was very close, but we took three of four games. I think we took total points by only four. My average is up to 98 (handicap 82), and I bowled 100, 115, 111.

New Orleans should be very proud of how far they came in the playoffs. To all my coon-ass friends, you should feel good about yourself.

We will be very busy the next few days, but I should be able to post this weekend from Tucson.

Just up here in Colorado, looking forward to our working vacation.

Sincerely, Caroline

I Have a Bad Cold But Still Got Chemo

2007-01-21T03:25:00.000-08:00

I've had a bad cold this week, but I still had chemo this Friday - Gemzar & Avastin. I have not been able to sleep tonight which I think is the steroids. We are leaving town for the Tucson Gem & Mineral Show on Wednesday and have a ton of things to do by then. Robert is still getting moved out of his gift shop space, plus he has to pack for the show. I still have to get W-2's and quarterly payroll taxes done. With the cold this week, I've been knocked out a bit, but seem to be getting better.

Hemoglobin fell below normal this week but wasn't too bad. Platelets also somewhat low. Weight was 63 kg, same as last time, but I've been eating like a pig. (This is my favorite part about cancer, you get to eat anything you want and not gain weight. I could probably eat a whole friggin' cheesecake and not gain an ounce.) I went back on the Xeloda on Friday night. Liver enzymes were mostly good. The ones out of what were only slightly so. Bilirubin was normal. Haven't gotten CA19-9 tumor marker yet.

Dr. Bergen said that the next time we are in Denver, we should check in with the Anschutz Cancer Center at CU Medical Center to see what other procedures they might recommend that aren't available in Grand Junction. We will probably do that the end of February.

I go back for chemo at 9am next Wednesday. We'll leave Grand Junction and head to Arizona. We hope to make it to Prescott to my sister's house, by Wednesday night. We'll head down through Moab, Monticello, Bluff, Blanding, and Mexican Hat. We should be in Tucson by Thursday and ready to sell minerals on Friday. We don't know our room number yet, but we'll be at the Inn-Suites. (At this show, you set up in your motel room.) I am looking forward to some warmer weather and flatter terrain and not having to worry about slipping on the ice and snow.

Well, the bowling team is tied for second with the OJ's who are supposed to be hot right now. We have a tie-breaker game tomorrow night. Even if we lose, I think we still get a trophy for third place. I think I should get most-improved bowler. I think my handicap has dropped almost 10 points, I've never missed a game, and I had chemo and radiation during this league. So I think 3rd place is pretty darn good.

I hope to do my radio show at 1pm tomorrow as well on KURA, 98.9. I think the show is "streamed" on the internet, but I have no idea how you pick it up. They just got a new turntable so I can play vinyl tomorrow if I want. Far out, man!

Okay, I'm going to try to go to bed now. We got a little snow tonight, but only an inch or so.

My deepest sympathy is sent to the Clements family in Utah. Mark Clements, my fellow cholangiocarcinoma patient, passed away last Friday. He was 40 years old and leaves behind a beautiful wife and four wonderful children, not to mention many friends and family who loved him dearly. His sister, Stacie, has been instrumental in setting up the cholangiocarcinoma website for which I am eternally grateful.

I'm sending my love to my Aunt Jean in Florida who is struggling with several health issues at this time, and to her children Donald and Nancy.

Also, I want to send a shout out to my relatives from Kansas City and in southeastern Nebraska. I'm sorry I haven't written but I really appreciate all your cards, letters, and e-mails.

And thanks to all of you who are praying for me. I think God has heard. I'm still here. I don't know for how much longer, but I told God he has to let me live long enough to finish cleaning up and organizing my house. And for those of you who have seen my house, you know that might take a while. I'm slowly, but surely making some progress. I'm kind of like Earl (from the TV show "My Name is Earl") - I have a list of things. I'm not leaving till I get 'em all done.

Just up here in Colorado, hoping to get some sleep so I can do good at bowling tomorrow night.

Sincerely, Caroline

Second Place

2007-01-16T09:40:00.000-08:00

We started out bowling really well last night and took the first two games, but Hawaiian Heat came on strong in the third game and beat us in total points as well. So we took two of four games. We are now in second place. If the OJ's (Lynn Olin and the Jennings brothers) take all four of their games this week, we will be tied for second and have to have a bowl-off with them for 2nd. They're supposed to be really tough right now.

My scratch scores were 109, 88, and 112. Mike Wage, our best bowler, had a scratch score of 204 in the first game.

Well, it looks like we'll "medal" (end up in the top three). The no-tap league starts mid-February and our team plans to bowl then, too.

I have a cold today, so I am laying low and getting some bookkeeping done. My husband Robert is in City Council meeting all day and tonight as well. He had to get up at 5:30 am this morning as the City Council cooks breakfast for the employees once a year and today was that day.

I watched part of the Golden Globes last night, and I was glad to see Hugh Laurie win for "House". We recently watched The Chorus (La Chorista) and Men with Brooms on DVD and they were both good. Men with Brooms is a comedy about the sport of curling.

Back to work!

Just up here in Colorado, understanding what Michelle Kwan felt like when she got the silver at the Olympics. I still feel good about myself!

Sincerely, Caroline

Greetings from Gravyland

2007-01-14T12:00:00.000-08:00

I really didn't expect to still be on this earth by now, so I consider my life to be "gravy" at this point. I am sopping it up with a biscuit and enjoying every bite! There's a song by the folk-singer John Gorka called Gravyland which he says is "the kind of song you write when your real life exceeds your dreams". It's on his Temporary Road CD which I think is his best. It also has the song Looking Forward which is the first song I ever heard by him. I was working on an audit in Abilene, Texas in 1993, and they played it on the NPR station. Robert & I got to see John Gorka and Lucy Kaplansky in concert together at a winery in Grand Junction a few years ago. It was a real treat for us.

CT-SCAN UPDATE
I had a CT-scan last week. Two of the larger tumors in my liver have grown by 1 to 2 cm which is the bad news, but the good news is that they didn't see any new tumors anywhere else such as in my lungs or abdominal wall. We're going to stick with the current chemo regimen despite the growth. We think that my being off chemo while I was on radiation in November is what allowed the tumors to grow.

I had a Gemzar and Zometa (bone hardener) infusion this week. I'm tired this weekend from the chemo. I would normally be at the radio station doing my show right now, but I am just too tired. My tumor marker was back up over 3300. My hemoglobin was 13.5 which is in the normal range which is the first time it's been that high in months - the Aranesp shot did the trick. Platelets still a little on the low side. Weight was 63 kilograms. I had three breadsticks with my pasta at Olive Garden that day.

BOWLING NEWS
We took three of four games against the MAKK Daddies last Monday night. (The MAKK Daddies are: Junior Mattivi, County Sheriff; Chris Alvarez; Shane Kavanaugh, Ouray Policeman; and Adam Kunz, Ouray Fire Chief. Junior and Shane had new bowling balls which I coveted, although they had some trouble adjusting to them which may have helped us to win.) I bowled a 138, 94, and 98. That first game was 42 points above my average (96) - we took that game by 64 points. I had the same scratch score in the first game as Mike Wage, our best bowler.

We were tied with the Mixed Nuts who took all four games last week against the Hawaiin Heat. We bowl HH tomorrow night, and the Mixed Nuts have a bye. We have to win all four games to stay in first place. WISH US LUCK!

The Ice-Climbing Festival is going on in Ouray this weekend, and we have people from all over the world in town. We've had a bit more snow, so we definitely have a cold, but beautiful winter happening outside.

Okay, I think that's it for now. I feel a nap coming on. I took a long nap yesterday afternoon and was awakened by fireworks at 5:30pm. Apparently, the Fire Department blasted off the ones that wouldn't go off on New Year's Eve. I'm sure it was part of the festivities at the Ice Park, so it was a nice touch.

Just up here in Colorado enjoying biscuits and gravy.

Sincerely, Caroline

Tied for First; Feeling Better

2007-01-08T10:09:00.000-08:00

After last week's round of bowling, my team is tied for first again (with the team Mixed Nuts). Yippee! We have two games left - tonight and next Monday. Wish us luck. Like I said before, I want to get my picture on the wall of the Elks' Bowling Alley on a legitimate basis. It'll be part of my legacy in Ouray. Only the first place team is pictured. It'd be awesome to win for a regular league and not just No-Tap (which starts mid-February and I hope our team will do that league).

I hit the chemo slump on Saturday, but I'm feeling better today. I just got really tired, and Robert & I were going to the mineral showroom to finish some 2006 bookkeeping, but I sat down on the bed which ended up being a long nap with Biscuit (aka Jabba the cat) on my chest. She's like a paperweight holding me down. It didn't take too much persuasion to lie down and stay put for a while. We did get to the mineral showroom yesterday and got most of our work done. I'm going to try to add a link to this blog for our website for ColoradoMinerals.com.

My left hip does hurt some, but it may be the Aranesp shot stimulating the bone marrow. My right hip hurt this weekend, too, but it went away. That makes me think it's the Aranesp. I also just found out that my CA19-9 is back up to 3295, dang it. I need to get back on my Xeloda tonight after I bowl. I stopped Saturday night because the hands and feet were swelling up. On a positive note, my hair seems to be getting thicker and not so fuzzy.

My good days are starting to be better, and the bad days aren't so bad. The Prilosec seems to help with the queasiness although I do still get it, just not as much. I think the radiation in November added to my fatigue recently. Maybe that's wearing off - hope so. My weight keeps trying slip down on me despite adding bacon, butter, and cake & ice cream to my diet. Fortunately, my appetite is good. I think there's some fudge out there with my name on it that I'll track down today. After being on and off Weight Watchers most of my adult life, this is a real change. I think we'll go to Olive Garden for lunch on Wednesday after my scan and chemo, and I'll eat all the breadsticks I want!

We had more snow last week, so it is a white, winter-wonderland outside.

I want to thank everyone again for all your prayers, positive thoughts, cards, gifts, flowers, and warm words. It keeps me going, and I think the prayers are working. As I've said before, I didn't think I'd be alive at this time, and it's just great to be here!

I have to scoot. Gotta get some work done while I have some energy.

Just up here in Colorado enjoying a sunny, bright white day and hoping to bowl well tonight. You can imagine what fun it is to say to some of those crusty Elk dudes, "Hey, I'm a woman, I have cancer, and I'm bowling better than you!"

Sincerely, Caroline

More Chemo. Bowling Team Took All Four.

2007-01-04T21:10:00.000-08:00

I had chemo yesterday in Grand Junction (GJ). My hemoglobin/red blood cells were improved. Platelets were on the low side, but I was still able to have chemo - Gemzar and Avastin. I haven't gotten my CA19-9 tumor marker results back yet. My weight was down a bit, so I'm doing my best to pig-out. I'm doing the inverse Weight-Watcher's diet. I am back on my oral chemo, Xeloda. Usually, I take it four or five days a week, then I have to go off due to hand-foot syndrome for two - four days.

My regular oncologist was out of town, so I saw another doctor. She recommeded taking Prilosec for my queasiness/nausea, so I took one today and it seems to be helping. The nausea I get from chemo isn't like the nausea you get from food poisining, the flu, or drinking too much alcohol. It's like a heavy feeling in my stomach that makes me not feel like eating, but once I do, I'm fine. It is uncomfortable and occasionally, I feel like I will actually hurl, but I never have. The substitute oncologist said that the acid balance in your stomach gets out of whack with the chemotherapy, and the Prilosec may help. I think she may be right, but it'll probably be a few days before I know for sure.

I am scheduled for a CT-scan next Wednesday morning, and I'll see my regular oncologist after that. I should have Gemzar next week and possibly another Zometa (bone hardener) infusion. I get the Avastin every other week.

I'm starting a drawing class next Tuesday night here in Ouray, and I'm looking forward to that.

I have two more weeks of bowling. The official scorekeeper went through and double-checked all the scores from bowling and found that we were actually in fourth place, but very few games separate the teams. The Tow-Ho's were in first place, but we bowled them Tuesday night and took all four games. I'm not sure yet how we're standing after this week. My husband Robert came by the Elks after his City Council meeting, and we talked him into subbing for one of our missing team members. He did pretty good. His handicap is 72 which isn't bad for someone who hasn't bowled in five years.

We will be doing the Tucson Gem & Mineral Show later this month. I'm looking forward to some warmer weather and flatter ground. It's so icy here right now and hilly in Ouray that slipping is always a risk. A good friend of mine slipped on a patch of ice the day after Christmas and broke her arm.

Hope everyone is doing well out there. We ate black-eyed peas on New Year's Day for good luck. It's a southern thing that we always did when I was growing up in Dallas.

Just up here in Colorado, walking around with a ski-pole, trying not to slip on the ice.

Sincerely, Caroline

Happy New Year!

2006-12-29T10:09:00.000-08:00

Happy New Year, y'all! Looks like I'm going to last into 2007. Don't know if I'll make it to 2008, but I would like to be around for the next presidential election. I wonder how early I can absentee vote.

We went to Grand Junction on Wednesday. I had a Gemzar infusion. My red blood cells/hemoglobin count was low, so I got an Aranesp shot to stimulate the bone marrow to produce red blood cells. I got a larger dose of steroids again, I think because my weight has been dropping a little bit - down to 137.5 pounds, so I've been pigging out lately. White blood cells and platelets were okay, and liver enzymes mostly good. Tumor marker is down to 2946 which is still really high, but at least it's down from last week. It was really busy in the infusion area this week - trying to fit five days of patients into four since Monday was a holiday. We go back again next week, but Dr. Bergen will be gone and I'll see another doctor. I only got infused this week - Dr. Bergen had 19 patients that day, so I didn't see him. I'll be getting a CT-scan about the second week of January.

Felt good yesterday from the steroids - I did bookkeeping from 5pm to midnight at ColoradoMinerals.com (with a dinner break for a big hamburger), and then went home and read 'til 3:00 am. Robert got me for Christmas a copy of Cynthia Lennon's book "A Twist of Lennon" which came out in the late 70's. She is John Lennon's first wife. I had to read the last chapter about Yoko Ono first. Cyn was really gracious about what happened.

My bowling team (Mike & the Harem) is tied for first place with the Tow-Ho's. (The Duces and the Pecks are on the Tow-Ho's - Steve Duce is partners in the service station in town.) Tied for second are Mixed Nuts and Hawaiin Heat. I think the OJ's are in third, then the MAKK Daddies and Team #2 tied for fourth. There's only seven teams in the league and we're all pretty close. I'm hoping we can hold our lead and finish in first so I can get my picture on the wall of the Elks Lodge, fair & square. Some ambition - eh? We have three games left starting next Tuesday night. There's a private pot-luck party there tonight with bowling that I hope I can go to. Don't know if I'll hit my chemo slump by tonight or not.

On New Year's Eve, we've been invited to a friend's house on Log Hill for dinner. Moosie and Jim have just gotten engaged - yea! Moosie's sons are in town, and I am looking forward to seeing them and hear how their college experiences are going.

We took Ian to the airport on Wednesday when we were in GJ for my chemo. He made it home quite easily and his bag was one of the first off the plane. His bag got to Ouray on Christmas morning very early. The three of us went outside to meet the truck.

Robert is busy winding down The Sandman shop. We are getting things situated at the mineral showroom for ColoradoMinerals.com and wrapping up 2006 bookkeeping.

Congratulations to my sister Diane who passed a kidney stone last week. I think this is the fourth episode she's had with kidney stones since high school. In that first incident, she was in terrible pain, and we were getting ready to take her to the emergency room. My mother was try to sew a hole in the toe of her hosiery and ended up stepping on the needle in the commotion, so we had two emergencies.

Just up here in Colorado looking forward to the fireworks on New Year's Eve at midnight. Hope I can stay up that late - usually the noise wakes you up. It's really loud and reverberates off the mountain side.

Sincerely, Caroline

Ian's Here! Last Chemo Treatment

2006-12-24T11:41:00.000-08:00

We went last Thursday to Grand Junction (GJ) for my chemo. My blood chemistry was improved, so I was able to have Gemzar and Avastin. I got a bigger dose of steroids than usual before the infusion, so I felt good on Thursday. But yesterday, I felt pretty rotten - headache, fatigue, chills, achy. My tumor marker was up to 3100+ this week, and I never heard what my liver enzymes were, but they must have been okay since I got the chemo.

I did open my husband's store yesteray in the afternoon and had some business.

Robert went to GJ yesterday to pick up his son, Ian, who had quite an experience flying out of Denver yesterday morning. His flight was scheduled to leave at 9:30am, and he arrived at DIA at 5:45am. He wasn't sure he would get through security in time to catch his flight - the line was wound around the airport twice. He made it to the gate on time as his flight had been delayed. Then he was told his flight had already left, then he was told, no, it hadn't. Anyway, he made it to GJ about 12:40pm, but his luggage has yet to arrive. Robert & Ian waited around a while to see if it would show up on the next flight, but it didn't. But at least he made it!

I'm feeling better this morning, but I'm still staying home doing some paperwork. I'm not doing my radio show this afternoon - just don't have the energy. We will put our tree up tonight and decorate it now that Ian is here.

Robert & Ian will prepare our vegan feast, and I will open the bookstore for a while in the morning so we can get newspapers and maybe be there for anyone who needs a last minute gift. Then we'll have our meal and then reopen the store in the afternoon. The Beaumont Hotel, where our store is located, is serving Christmas dinner, and it's fun to see people coming through all dressed up and happy. Also, there's football on tomorrow, so we want to provide a place for people to go if they need a break from that or their families.

It snowed a little bit this morning, and we have quite a lot of snow on the ground. There are little mountains of snow around town where the road crews piled it up. Should be a good ski season and we can always use the moisture and snow pack.

Well, I suppose this will be my best Christmas ever. I'm still here and that's the biggest gift I could have wished for.

Hope your holidays are splendid and you and your families are safe and happy.

Just up here in Colorado, letting the chemo do it's work.

Sincerely, Caroline

Situation Improving, Including Bowling Score

2006-12-20T07:56:00.000-08:00

I started feeling much better yesterday. My hip hasn't been hurting so I feel encouraged that the radiation did take care of the tumor in my hip bone. Mentally, I had gotten kind of down and was cranky, but that has passed, too.

I attended the Woman's Club meeting yesterday and Doris Sutton was named "Woman of the Year". (Last year I was the recipient.) Doris is probably in her 80's and just does amazing things - she grows plants to sell at the Woman's Club Rummage Sale and they sell out the first morning. She helped get the Woman's Club Mini Park set up with the City of Ouray and lobbied for new playground equipment. She collected a gillion aluminum cans to help pay for the elevator in the Community Center. When I was City Treasurer here and Jim Miller was mayor, she and Verena Jacobson weren't afraid to come in and tell the mayor what they thought about various issues, and Jim Miller - who could be rather gruff and not afraid to cut people off - would be totally disarmed. I used to tell both of them I wanted to be just like them when I grew up. Doris said yesterday she realized that she has grown over 100 different varieties of flowers in her time here since 1961.

Last year, when I was awarded "Woman of the Year", it was one of my first outings after surgery and I remember it was so hard to get all dressed up and leave the house. I didn't expect to be here one year later to see this award given again, so I am really thankful that I'm still alive and doing as well as I am.

So I went to bowling last night, and had I not gone, our team would have had to forfeit. (One person was out of town, another had a school function that her kids were in.) Our team is in 3rd place, half a game from 2nd, and one game out of 1st. I bowled 78, 112, 129 and my hip didn't hurt. (It hurts a little this morning.) My average is 94 and my hadicap is 86. We lost the first game by a bunch of points, took the second game by 3 points, and then won the last by a bunch. In overall points, we were ahead so we took the "4th game" which is based on total points.

I couldn't get my ball to go where I wanted it to in the first game, so in the second game, I started bending my knees more, worried that it might make my hip hurt, but it didn't. So by the third game I got several spares which was very gratifying. The team we bowled against has some excellent bowlers with low handicaps. One of them, Richard Gibson, picked up some incredible splits - I was very impressed.

We have had probably two feet of snow since Monday night. Not a good day to travel in Colorado, but this will be good for ski season and the snow pack. We have winter storm warnings and avalanche warnings in effect.

I have chemo tomorrow and the snow she be letting up by then.

I have to scoot. I started changing out the window displays in the store last night and I have to go finish them this morning.

Happy Holidays everyone. Just be glad you're hear.

Just up here in Colorado happy about my bowling game.

Sincerely, Caroline

More Photos

2006-12-15T20:22:00.000-08:00

By the way, there are two more posts below this.

The first picture is our cat Biscuit who has found a sunny place in the living room.

The next photo is me when I played Verena Jacobson, the mining camp school teacher, in "Vignettes of History" in October. Next to me is Sue Hillhouse who portrayed Evalyn Walsh MacLean, daughter of Tom Walsh who became rich from the Camp Bird Mine in Ouray County. Evalyn owned the Hope Diamond at one point as well as the Washington Post.

The picture of me in the brown chair is the chemo area at St. Mary's. I love those chairs - they have heat and magic fingers. I was disappointed that I didn't get chemo this week, because that chair would have felt good on my chills and achy joints. And there's nothing like chemo to give you dark circles under your eyes. My hair is much thinner than it used to be and will stick out sideways most the time. Some mornings after I've had night sweats, I wake up looking like Don King - it will stick straight up. But hey, I still have hair.

Next is Robert at Bosque Del Apache Wildlife Refuge in New Mexico, a wonderful, peaceful place. I can't say enough nice things about my husband, and how he has helped me through all this cancer stuff. Honey, you're the best.

Following that, I am standing at the San Rafael Swell on I-70 in Utah on our drive to Las Vegas last month. Note to self: this sweater makes you look big.

Last but not least is a picture of Robert with our friends Duncan & Mary who visited us right before Thanksgiving on their way to New Mexico. Nice of them to come out of their way to see us. And for those of you who know Duncan, I'm proud to report that he can still make a restaurant lose money on "All You Can Eat" dinners. We went to the Bon-Ton here in town on all-you-can eat-pasta night, and he is the only person I've ever seen order a second bowl.

One other note. This past Tuesday we went up to Grand Junction the day before chemo, and we attended a luncheon for my support group up there. It was really wonderful to see everyone. We spent the night at Two Rivers Winery B&B - Robert's son Ian had given us a gift certificate there. We went to a matinee and saw "The Queen" which we thought was quite good. We went to dinner and were going to see another movie, but I started feeling really rotten, so we just went back to room and took it easy. I was freezing cold and climbed into bed with my clothes on including my hat, coat, and gloves.

Close Encounters with the Deer

2006-12-15T17:17:00.000-08:00

On November 24th, the day after Thanksgiving, I was headed to the bookstore to check on an employee when I noticed a huge buck in my neighbor's yard.

He let me take a few pictures of him, and there were also a couple of does. So I went over to our yard and shook our apple tree so the deer could have the last little shriveled-up apples of the season.

So the deer came over to eat the apples which the buck particularly liked. (We'll call him Woodrow.) One of the does was pretty tame and would come very close to me. (We'll call her Daphne.) When the apples were gone, I turned around and the doe was right behind me. I thought she was going to goose me in the rear. So I went inside and got a few carrots which she would take right out of my hand. The buck didn't care much for the carrots. Yes, I know I shouldn't feed the deer, and I promise I won't do it again, but I couldn't help myself.

Then, Daphne must have assumed that we were on a first name basis, so she drug the Halloween pumpkin from our front porch and started in on it. We hadn't carved it - it was just a solid pumpkin. She proceeded to tear it shreds and ate almost all of it in one go. She had her head down inside the pumpkin, just chowing down.

Woodrow made noises that sounded like creaking wood, and he seemed quite interested in the doe. At one point he started to bugle, and I went inside! I didn't want to get too close to his antlers.

By the way, our yard is covered in several inches of snow again. We may not see the grass again until April or May.

No Chemo This Week

2006-12-15T16:25:00.000-08:00

For the first time, I was not able to have chemo this week due to low platelets, low white blood cell count, and a fever. I've been having flu symptoms and feeling crummy off and on since chemo on December 6th which included the Zometa (bone strengthener) infusion. Dr. Bergen says that Zometa can make you feel like you have the flu, but it usually passes after one day. It first came on last Thursday night (Dec. 7th) after the steroids that I got with chemo wore off. It improved some over the weekend, but it came back Tuesday night.

Dr. Bergen said it might be the flu so I'm taking an antibiotic. It could be a blood infection and blood was drawn to do a culture, but today after 48 hours, nothing had shown up. It could also be "tumor fever". I'm wondering if it could be the Zemota. I think I also let myself get dehydrated.

Yesterday, I spent all day in bed with chills, low-grade fever, headache, joint pain, nausea, dizzyness, chest pain, abdominal pain, mouth sores, and fatigue. Today, I am better, but I had swollen and sore joints this morning, mostly my fingers and knees. I didn't eat or drink much yesterday and today I weighed 4 pounds less today than on Wednesday. So I've been eating and drinking and I'm feeling better, but I still have some swelling in my joints.

I saw Dr. Oldroyd (the radiation oncologist) today. Both he and Dr. Bergen don't think I need to have the hip surgery. We'll do a scan in a few months to know how the radiation did, but mostly pain is to be my guide and that has been subsiding.

On the plus side, my tumor marker is down to 2963 (from 4164) and my liver enzymes continue to look mostly good.

I will close this post and work on getting some photos on this blog in other posts.

Thanks, as ever, everyone for your care and concern.

Just up here in Colorado drinking Gatorade, decaf tea, and lots of water. Don't forget to drink your fluids!

Sincerely, Caroline

A Quick Note

2006-12-11T09:38:00.000-08:00

Just wanted to do a brief update. We are very busy with a lot of year-end bookkeeping and other business-related issues, so if I don't post for a while, it's due to work. We are closing Robert's shop The Sandman on December 31st. Robert has an internet mineral business, coloradominerals.com, that will become his primary focus. He will still do some sand-pouring, and we will stock the bottles at the bookstore.

Last Friday, I saw Dr. Bynum, the orthopedic surgeon, about possibly having a pin put in my hip. We will discuss that with Dr. Bergen and Dr. Oldroyd this week. The cancer is not in a weight-bearing area at this time, but the bone apparently could break easily and we wouldn't have much left to work with if it did. I have a follow-up with the orthopedic doctor in January.

I had the Zemota infusion along with Gemzar last Wednesday. The Zemota is the bone strengthener. My bloodwork was still good. I felt good the first day after infusion and then went into a chemo slump on Thursday night and felt like I had the flu. Those symptoms have been improving everyday.

We see Dr. Bergen again this week on Wedensday, and I have a follow-up appointment with the radiation oncologist (Dr. Oldryod) on Friday. There's still pain in my hip, but it is gradually getting better. I'm being very careful not to slip on snow or ice.

My bowling team has a bye this week. It's getting very hectic with all the Christmas activities and holiday business coming upon us, but it's fun, too. Robert's son Ian is coming for the holidays, and we are looking forward to that. He eats a vegan diet, so we will have a healthy holiday meal.

Well, I gotta get back to work. Again, I owe many people a call, e-mail, or card. I'll be in touch soon. And I still want to get some pictures posted.

Thanks again for so many prayers and good thoughts.

Just up here in Colorado getting some work done.

Sincerely, Caroline

Tumor Marker 4164, Bowling Team 1/2 game out of First Place

2006-12-05T23:40:00.000-08:00

My tumor marker last week was an all time record high for me - 4164. Normal is something like 0-60. Looks like I will be staying on the Gemzar, but I'll find out more tomorrow when I see the doctor.

In fact, I have to get up really early and I need to hit the hay. We see Dr. Bergen at 8:30 am and then we're driving over to Denver for a quick business trip. We'll be back home Thursday night.

I bowled a make-up game last night and I didn't do so good: 97, 75 (ugh!), 96. We are in 2nd place and are half a game behind the first place team. My average was 94, but it'll go down again.

We had a good time at our show in New Mexico last weekend. Nice people in that gem & mineral club.

I still need to get my deer pictures posted and will try to do that later this week.

Just up here in Colorado, catching up on some e-mail and staying up too late! Hope everyone is doing well out there.

Sincerely, Caroline

Headed to New Mexico

2006-12-01T06:57:00.000-08:00

I have much to tell, but it's been hectic the last few weeks, so here is a quick post before we leave for Los Alamos, New Mexico today. We're doing a gem & mineral show there.

I saw Dr. Bergen again on Tuesday. My bloodwork was in good shape. I have a few things elevated, but he said that was due to the chemo and things looked pretty good in that areana. A nurse at the radiation clinic pointed out that my cholestrol is high, but Dr. Bergen said that it's not a concern at this point. He implied that the cancer will get me long before any heart disease.

I was infused with Gemzar as well as Avastin on Tuesday. I will have a bone strengthener infused next week which I will get once a month. The Avastin is done every other week. If my CA19-9 tumor marker is down, we will probably drop the Gemzar. I haven't gotten those results back yet. I was off the Gemzar for almost three weeks while doing radiation, so Dr. Bergen wants to see if it made a difference or not. If my tumor marker is down, then we'll assume the Gemzar isn't doing that much.

I did get to attend my support group briefly on Tuesday and it was nice to catch up with those gals.

I am taking the Xeloda orally still, but I had to suspend this week as my feet are swollen and tender again from hand-foot syndrome. I've been on my feet more this week at the bookstore and yes, I did bowl Wednesday night. The Avastin may be contributing as well.

I got my steroids before chemo so I felt good on Wednesday and bowled that night, even though my husband and doctors are trying to talk me out of it. My hip did really hurt the next day, but it hurts most of the time. I bowled 85, 126, and 92. We took all games. I think we are in second place at this point and closely chasing the first place team. I picked up one incredible split. I thought my ball was going to miss the middle pin, but it just nicked it and it gently rolled over and got the corner pin. I love it when that happens. Everyone was impressed!

I will be having some scans in the near future to check on the radiation progress and my hip bone, but nothing has been scheduled yet. I do see an orthopedic doctor on Dec. 8th and have a follow-up with the radiation oncologist on Dec. 15th.

We have a ton of snow here, so I am careful walking around. Last week, I had a wonderful close encounter with deer in the front yard and will get those pictures posted soon. I have some other pictures from this fall to post as well, but that'll have to wait until next week.

I have to scoot. I have a bunch of stuff to do this morning. Mary Lou, if you read this, I will call you this weekend. I'm sorry we missed you on our Socorro trip. I got your card.

To many friends and family, I am very behind in correspondence. Jan Ruby, I want to do lunch, I've just been really tired from the radiation, so I've been spending time resting, but I hope to catch up with you soon as you always bring my spirits up.

Okay, gotta run. Just up here in Colorado embracing the meds. I'm too busy to have cancer and let any side effects keep me down, but it's not always easy to get my body to do what I want it to do.

Sincerely, Caroline

Happy Thanksgivng!

2006-11-22T08:44:00.000-08:00

Last year at this holdiay, I was really scared that it might be my last Thanksgiving. But I'm still here and very grateful.

Also, I will see my 52nd birthday this Saturday.

We got back Monday from our trip to Las Vegas which was fabulous. The Cirque du Soleil show was great. We also had lunch at the Quark Bar & Grille which has a Star Trek theme which I really enjoyed. We did go to see the Dancing Waters at the Bellagio as well. (They have an elaborate fountain that is choreographed to music - very relaxing to watch.) We had great weather. Thanks to my sisters Suzie and Diane and my brother-in-law Al for making this possible. Also, thanks to my childhood friend Beverly Bowden who came in from Ft. Worth to join us. I will have some pictures to post later on.

I had my last radiation on Friday, November 17th. I still have some pain in my hip which they think may have been aggravated by bowling. I don't bowl again until next week, so maybe I can bowl the first game or two and then have a sub step in or use my bowling average. I will see the radiation oncologist for a follow-up on December 15th.

I see Dr. Bergen (my oncologist) next Tuesday to start infused chemo again. (I'm still taking Xeloda orally and am able to stay on it longer before the hand-foot syndrome gets too bad.) I think he'll be doing Gemzar and Avastin next time. I will get to go to my support group that morning in Grand Junction, so that will be good. I expect that we will be setting up some future scans. I'm anxious to find out what my bloodwork results will be. I think I'm still anemic. I am tired a lot.

I am also scheduled to see an orthopedic doctor in Montrose on December 8th regarding the hip bone and whether or not I'll need a pin in my hip. I have fallen twice recently. Once was in Vegas when I tripped on a mat in the lobby and landed on my knees. I tripped yesterday at home over the vaccuum cleaner cord and landed on my right side. Fortunately, I didn't land on my left side either time. I am walking more slowly and watching the ground.

We just had some friends pass through town who spent the night last night - Duncan & Mary Edwards of North Carolina. They used to live in Denver. It was great to see them. We had hoped our friend Darlene Ritchie of Denver would be able to come for Thanksgiving, but she had some other issues come up and won't be able to join us, but we hope to catch up with her soon. Robert's son Ian will be out during Christmas and we will have a vegan holiday dinner.

Robert is going to cook for us for Thanksgiving - a turkey and some of the trimmings. We will eat early and then go open the book store. We actually enjoy being open on the holidays. People are in a good mood, there's no orders coming in, and it's a pretty relaxing day.

It's a gorgeous, sunny day in Ouray and looks like we'll have good weather for the rest of the week. Next weekend, we will be in Los Alamos, New Mexico for a gem & mineral show. I love this little club show - the members are so nice and the auxiliary that has the food concession does a great job of home cooking. The other dealers are very friendly, too.

We went to see the new James Bond movie in Vegas this weekend and it was good. We all felt the new actor is the best Bond since Sean Connery.

So that is it for now. I hope everyone has a beautiful Thanksgiving.

Just up here in Colorado enjoying the sunshine and watching the snow melt in our front yard.

Sincerely, Caroline

Seven Down, Three to Go

2006-11-14T16:39:00.000-08:00

Here are some photos from the Bosque del Apache Wildlife Refuge in San Antonio, NM. Robert and I went there last Sunday morning. There were thousands of birds. The white ones are snow geese and the gray ones are sand hill cranes. I wish somehow I could have captured the sound of the birds - I especially like the crane's calls. I could have sat there all day listening to the birds. It is a very peaceful place.

We had a good time at the mineral symposium. We got to see many friends. We attended the talks and dinner on Saturday, but couldn't stay on Sunday for the lectures and auctions. We did the tail-gate show at the Super 8 Motel, and we were happy with our sales.

We stopped on our way home and saw friends in Durango. Ouray had gotten about a foot of snow while we were gone and coming over Red Mountain Pass was a bit treacherous.

My friend Nancy Wolkin of Ouray took me to radiation today. Alida Allison took me last week on Tuesday. Thanks ladies for the rides!

Okay, bowling scores. Last night, our team was tied for third place before we started to bowl. We took three of four games by a narrow margin against the second place team. I bowled 88, 100, 86 - almost the same as last week. My hip was getting sore by the third game despite taking Ibuprofen.

I get a lot of pain in my lower left abdomen just above the hip area and some pain in the hip bone. I've also been tired. I'll be done with radiation on Friday. We're off to Las Vegas after my Friday treatment to see the Beatles Love show by Cirque du Soleil. Yippee! We'll meet my sisters there and come home on Monday.

So that's it for now. My best to you all. Don't forget to have at least a little fun everyday. And for God's sake, don't forget to eat your fiber.

Just up here in Colorado, enjoying being snug at home on a snowy evening.

Sincerely, Caroline

Four Down, Six to Go

2006-11-09T12:34:00.000-08:00

I had my fourth radiation treatment this morning. It goes very quickly now. They've done scans and I have little dots tattooed on my hips. I do get pain in my left hip, and Ibuprofen helps, but I also got a prescription for Oxycodone which I'll probably take at night.

We saw Dr. Bergen yesterday, and he has suspended Gemzar infusions until after radiation is over. I next see him and have chemo on November 28th. It was one year ago yesterday that I first saw him, so I took him an anniversary card. I was diagnosed with cancer on Oct. 25th, 2005, and I'm still here.

The spotted appearance of my spleen turned out to be nothing. The gastroview that I drank before the CT scan last week and/or the injection before the bone scan to light up your bones may have caused it.

I am still taking the Xeloda orally. I do feel tired which I think both the chemo and radiation are causing.

We are leaving tomorrow after radiation for Socorro, New Mexico for a mineral symposium. We hope to get out to the Bosque del Apache bird refuge. There should be sand hill cranes and snow geese. I'm looking forward to getting away for a little bit.

I did bowl Monday night after my first radiation treatment. My thumb had two sore places on it, so I wore a glove which I think supressed my bowling scores: 89, 100, 80. My team did win three of four games. We were tied for fourth place as we began Monday night. The nurse at the radiation clinic gave me some latex gloves which I can wear to bowling if needed, but I'm also using them at night with bag balm and my hands are much improved.

We have seen bald eagles in the trees along the Uncompahgre River in Ridgway on three different occasions. One of the nice things about the trees being bare is being able to see all the bird's nests.

Well, I should scoot. I need to undo the Halloween window at the store and put winter sports books on display. It won't be long now until we'll have enough snow for XC skiing, snow-shoeing, downhill skiing, etc.

Just up here in Colorado enjoying a warm, sunny day.

Sincerely, Caroline

Starting Radiation Next Week

2006-11-02T16:02:00.000-08:00

We met with Dr. Oldroid, the radiation oncologist, today, and I will be starting radiation next Monday in Montrose for two weeks (Monday - Friday). We will have to alter our vacation plans, but we still plan to go to the New Mexico Mineral Symposium next weekend and the following weekend, we're meeting my sisters in Las Vegas to see the Cirque de Soleil Beatles show!

The radiation has a high chance of taking care of the cancer in my bone which is actually not in the ball. It's in the spur that is on the outside of the thigh. He said he did want to also target the hip socket as well because it's a hard place to get to, so he wants to take care of any cancer cells that might be there.

He did say that I don't have to give up bowling!

I have to run. I have book club tonight. This weekend I'm in another writing workshop taught by Mary Crow, Poet Laureate of Colorado.

Thanks everyone for your warm thoughts and wishes.

Just up here in Colorado, trying to get a fire started in the wood stove. Kind of chilly tonight.

Sincerely, Caroline

It's in My Bone, Damn It!

2006-11-01T21:05:00.000-08:00

Had the scans today and they found cancer in my left hip bone - in the ball of the hip socket. When I walk, I could feel something there. The good news is that this is very treatable. The better news is that the tumors in my liver look stable. The possible bad news is that my spleen looks mottled or spotted on my CT- scan, but Dr. Bergen says that cancer rarely goes to the spleen. We'll have to wait for the written reports from the CT-scan radiologist.

I will have radiation for the bone, and we meet with a radiation radiologist tomorrow in Grand Junction (GJ). His name is Dr. Oldroid. (Robert says this is opposed to Dr. "New Droid". I think I'll just call him R2D2.) Anyway, they were going to send me to a radiologist in Motrose (which is 65 miles closer than GJ), but I have to have a "simulation" with a CT scan first so they can mark precisely on my body of where to direct the radiation. They don't have the equipment for that in Montrose, but I may be able to have my radiation treatments there. We're hoping the simulation can be worked in tomorrow in addition to meeting with the radiologist and possibly even the radiation itself. Dr. Bergen didn't give me chemo today in case I have radiation tomorrow. He says the two together can make you really sick, so we held off on the Gemzar infusion. He told me to keep taking Xeloda. (I had to suspend it last weekend as usual due to hand-foot syndrome which hit my hands more this time than my feet.)

We're not sure how many radiation treatments I'll have. I've heard it can be every day for two weeks, but another radiologist told Dr. Bergen they can possibly do it in one shot. We are supposed to go to New Mexico and Arizona for ten days leaving on Nov. 10th, and I'm hoping it won't interfere with this trip.

Dr. Bergen says we will be starting the Avastin and he also wants to infuse another drug once a month to strengthen the bone, but I can't remember the name of it. He said I need to be careful about falling as my bones will be more brittle. Guess I'm done with skiing for this lifetime. Rats! I also have an appointment with an orthopedic surgeon in Montrose. Dr. Bergen said we may want to put a pin in my hip bone which is a fairly minor procedure.

Robert has suggested I give up bowling, but I don't want to. I've decided that I'll just stand up straight and hurl the ball, overhanded if necessary (just kidding), OR just hold it between my legs and chunk down the lane. Our team was in third place before we started Tuesday night, but we lost three of four games, so I don't know where that will put us. I started off great. My average is 93 and I have an 87 handicap. I bowled a 124 in my first game (211 with hadicap), and then my hip started hurting and I bowled a 90 and then 75 (ugh!). The best and worst games of my season, but I calculated that the Tuesday night games still raise my average to 95. I've never know anyone who's broken their leg bowling, so I really don't want to give it up!

My hip pain had actually gone away for a few days before bowling, so I thought sure that nothing would turn up on the scan. No such luck. I did feel awful last Saturday morning from chemo and couldn't get to work until 11:30 am. My bones ached, my muscles ached, my organs ached. It hurt to open my eyes. Once I got to the bookstore, I just perched on the stool behind the counter and took it as easy as possible. When I woke up Sunday morning, I told Robert, "I feel much better!" Yesterday, I almost felt normal.

I need to do a few shout-outs to family members. To my cousins in Nebraska, I hope Tony has as speedy as recovery as possible. To my Mississippi in-laws, thank you for the wonderful blanket with the felted hearts! I just love it.

Just up here in Colorado going to the doctor a lot. Hey, now I get to check out the radiation department at St. Mary's. I think I've had the full cancer experience: surgery, clinical trial, chemo (both oral and infused), and now radiation. More fodder for my book.

I'm really not ready to leave this world yet. Cancer be damned!

Sincerely, Caroline

Chemo Went Well Yesterday

2006-10-26T22:34:00.000-07:00

We did our weekly trip to Grand Junction yesterday. My liver enzymes were a bit out of whack but only the tiniest bit. My hemoglobin was back down to 11.9, so I got a shot of Aranesp. I have to call tomorrow and get the results of my tumor marker.

I also attended the "Look Good, Feel Better" seminar sponsored by the American Cancer Society. If this is offered at your oncology center, I recommend that you take it. We did make-up and got a free bag of cosmetics donated by various companies including Chanel, Clinique, Estee Lauder, Avon, etc. I was told that one of the Chanel lipsticks I got was worth $50. We also tried on hats and wigs. Most of the women in the group were bald. My hair keeps thinning, and I don't know if it will eventually all come out or not. It is actually quite curly in the back. I did take a wig that a beautician styled on me. It's short and blond and curly, but Robert said it looked gray out in the sunlight and he didn't like it. So I'll probably return it. In the make-up session, they talked about how you have to be careful not to get bacteria in your make-up or facial products since we're more susceptible to infection while on chemo. I hadn't thought about that.

Driving home from Grand Junction yesterday afternoon, I had fallen asleep and Robert woke me up as we were driving into Montrose. He said, "Caroline, you have to see this." The wind was blowing like crazy and there were tumbleweeds all over the road and some of them were huge. I took a couple pictures - don't know if they'll turn out. It was surreal. Then we went to the grocery store, and when we came out, it was a blizzard. So we drove home in blowing snow. It snowed most of today, but it's supposed to be warm this weekend. Yea!

I bowled Tuesday night - 97, 81, and 101. We won all three games and the overall score. We are 7 wins, 5 losses after three rounds. There's hope for us! My hip hurt and I'm having to adapt to standing up straight and hurling the ball. But I got better at it by the third game.

I'll have my CT and bone scans next week. I hope to God they don't find cancer in my bone, but the pain isn't going away and isn't responding to Ibuprofen or Tylenol like it before. It could be the Aranesp causing bone pain and bursitis. Anyway, it'll be good to find out. I worry that all the tumors in my liver will have grown together, and they'll tell me I have a "football" in there. But with the blood work being improved and the tumor marker trending down, we're hoping that won't be the case.

Just up here in Colorado hoping the snow melts this weekend.

Sincerely, Caroline

Bloodwork Mostly Good Last Week

2006-10-23T15:49:00.000-07:00

We saw Dr. Bergen last Wednesday, and I also got to visit with the new dietician at my cancer center. I've been keeping a food journal that I'm going to take her so she can review it. I'm also reading a book called Nature's Cancer Fighting Foods by Verne Varona which I think is very good. The dietician didn't recommend it, I just found it when I was doing some book orders, but it does reflect some things that she told me.

My liver enzymes were either normal or close to normal last week. Red blood cells were 12.1 (normal is 13) and platelets were normal. My tumor marker is back up to 2030. I have chemo again this Wednesday, then on November 1st, I'm having a CT scan and a bone scan. Dr. Bergen wants to make sure the pain in my hip isn't cancer. He said cholangio doesn't usually go to the bone, but we're going to check to be on the safe side. Otherwise, Dr. Bergen is encouraged about how I'm responding to the Xeloda.

When I go for treatment this Wednesday, I'm also going to a "Look Good, Feel Better" session put on by the American Cancer Society which is to give hair and make-up assistance. My hair has thinned a bunch, and I get really bad dark circles under my eyes.

I've been feeling a little tired the last two days from the chemo. I did have to go off Xeloda this weekend as usual due to the swelling in my feet and hands, but I hope to start back tomorrow.

We had snow two days last week, and it is really cold in the mornings. But the last few days it has been warm and sunny by the afternoon - we've been waking up to beautiful blue skies.

We had some friends from Colorado Springs (Terry & Alana Miller) come visit on Friday night and had a nice time catching up with them. Alana works for Barnes & Noble so we always have a lot to talk about. Last Wednesday, we had friends over to watch Woodstock and Alice's Restaurant. Nancy and John were both at Woodstock, and John was an extra in Alice's Restaurant. I didn't bowl last week as my team had a bye. I bowl tomorrow night and I hope the swelling in my hands won't hinder my form. I did my radio show yesterday and had a special guest, my neighbor, Dr. Sharon Krupa Sirotek, a psychologist. We did the "Dysfunctional Love Show". Lots of love songs are really about bad relationships, so we'd play a song and talk about whether we thought the relationship would work out or where the singer was in the break-up process. Sharon, I discovered yesterday, is the second cousin of Gene Krupa, a drummer who was very popular in the 1940's.

Well, guess I better close. As always, thanks for all the prayers, warm wishes , and positive thoughts.

Just up here in Colorado enjoying the quieter time of year.

Sincerely, Caroline

Tumor Marker Down, Bowling Score Up

2006-10-14T09:48:00.000-07:00

My CA19-9 tumor marker was down to 1245 this week. Last week it was 2280 and the week before 1810. Week before that it was 1544, so this is the lowest for some time. A trend down is good.

I bowled Wednesday night: 91, 92, and 112. My handicap is 91 so that last game ended up being a 203. I really concentrated in the last game, plus I'd taken some Ibuprofen during the first game that took a while to kick in which alleviated some of the bursitis pain in my hip. I'm learning you don't have to throw so hard. A well-placed ten pound ball can get all or most of the pins. To pick up one spare pin, throw gently and it goes straighter.

Today is the "Vignettes of History" performance. My friend Toni asked for more info on Verena Jacobson whom I'm portraying. She was born here in 1907. Her maternal grandmother immigrated from Switzerland with two young daughters (one of which was Verena's mother Ida) after her husband died over there. She met Ami Massard in Salt Lake City and they married and moved to Ouray in the 1880's. Ida's younger brother, Frank Massard, was born in 1897 in Ouray and would be a close uncle to Verena, only 10 years her senior, and more like a big brother.

Verena's mother, Ida, married a mine engineer from Liberty Hill, Texas named Frederick Rucker in the early 1900's and had four daughters, Verena being the eldest.

Verena said the kids had to make their own entertainment growing up here. There was no TV, no radio (that came after WWI), no running water (had to go outside and pump it). There were 23bars and saloons on Main Street, so the kids weren't supposed to hang out there, and especially not on the two blocks of Second Street where the very active red light district was. Verena said they did a lot of hiking and had picnics in the hills as kids. They'd build a bonfire and roast weiners. The curfew bell would go off at 8pm and all youngsters freshman and below better get home. If the marshall took you home, your parents would ground you.

Uncle Frank and a partner opened a corner pharmacy along with the Isis Movie Theater next door which is where the Variety Store is now. Verena started working at the pharmacy as a young teen when she could barely see over the counter. She and her sister also worked at the theater next door taking tickets. The pharmacy was just a block up the hill from the red light district. Verena said some of those ladies would come in the store dressed very nicely (you would never know they were prostitutes) and were very polite - easy to wait on. They didn't mingle much with the rest of the town.

Verena went to college for two years after high school - there were only five students in her graduating class in Ouray. She attended Denver University for one year and then Western State in Gunnison for the second. She then took a test which enabled her to be a school teacher. She taught first for one year at a school on Log Hill, all twelve grades, and school only went June - October due to all the snow. Then she taught at the Piedmont School for three years. The kids there once put a snake in her desk drawer. Then she went to the school in the town of Sneffels up above the Camp Bird Mine and across from the Revenue Mine. It was very cold and snowy there and she was only able to get down to Ouray once in the winter - she walked down the 10 miles and 2,000 feet for Christmas, and then back up. The snow was packed on the road due to all the mule trains and teamsters hauling goods up and down from the mines. An avalanche came down the mountain once while she taught at Sneffels. They heard it coming and didn't have time to do anything. She told the children to cover their faces. She slide went around both sides of the school and filled it with snow and mist, but Verena and her four students (all from the Cook family) were fine.

Verena's sister married a man from Minnesota, Leonard Jacobson, in 1931. She had Verena come out the next summer to help when she was having a baby. Leonard's brother Julius started taking Verena to dances amd the movies, and they got married later that year. Julius died in 1960.

Verena came back to Ouray in 1971 to help in take care of Frank's wife and ended up staying and taking care of Frank as well. She got involved with the Presbyterian Church, Woman's Club, and the Museum. She wasn't afraid to go to a City Council meeting and let the mayor know exactly what she thought. Verena passed away earlier this year at age 98.

Just up here in Colorado, channeling the ghost of Verena!

Sincerely, Caroline

Scenes from a Happy Fall

2006-10-12T23:17:00.000-07:00

Here are some pictures from a recent roll of film. The first one was taken last Tuesday after we got snow up high in the mountains - sorry for the telephone wires. The next one is from the Hot Springs Pool Park. Next is deer in our front yard. Then there's me having a slump day with my "kitty heaters" Dumplin' (the calico) and Biscuit (the yellow tabby) - sorry for the mess in the background. Then there's one of our new bench at the cemetary and the view across the valley.

CHEMO AND POSSIBLE BURSITIS
We went today to Grand Junction for chemo. Dr. Bergen thinks the pain in my left hip could be bursitis. He said Ibuprofen should help the pain (it does). My red blood cells were 11.9 (normal is 13), but I didn't have a shot for stimulating red blood cells. They don't like to give it if your red blood cells are over 12, and since I was close, we didn't do it. My platelets are slightly below normal. Several liver enzymes were out of range, but not by much. I think I got a bigger dose of Gemzar today. Also, I have been back on Xeloda since Monday night. My feet are tingling, so that means I need to stay off them as much as possible, plus rest is good for the bursitis.

My next CT scan is November 1st.

PERFORMANCE ON SATURDAY AFTERNOON
I am working on my part for the Museum Fundraiser on Saturday. I've been researching my character, Verena Jacobson. It is an honor to portray her. Hopefully, I'll have some pictures from the show. It will be held at the Wright Opera House which is in the first photo above.

I better get to bed. I had my blog all done and the computer did a time out, and I lost the whole thing. I did have steroids today, so I'm a bit awake.

Robert and I rented the documentary, Born Into Brothels, and we thought it was very good. We were riveted to the TV. We have rented the documentary Woodstock and are going to watch with some of the locals who were there. I currently have the sci-fi channel on, so Close Encounters of the Third Kind is playing. The spaceship just landed.

Up here in Colorado, embracing the meds.

Sincerely, Caroline

Good Chemo Day, Bad Bowling Night

2006-10-08T08:54:00.000-07:00

Before I jump into the latest update from the doctor and my bowling scores, I want to do a few "shout-outs" of appreciation.

The support from friends and family I have received is so heart-warming and sustaining - thank you so much! I'd like to thank my cousin Beverly Graves Chestnut in Falls City, Nebraska, for her many cards as well as from her fellow church members. Thank you for your prayers - I think it's helping. To my sister Suzie's friends from the Duncanville, Texas class of 1967, thanks for your letters and messages - Nina Maloney, Charmayne, Jan, Cookie, Katrina. Thanks to aunts & cousins both in Nebraska and Kansas City and down in Florida, too. One of the upsides of cancer is to be drawn closer to family. So many other friends from all over the country plus right here in Ouray - you've been great. And to my husband Robert and my sisters Suzie & Diane (and bro-in-law, Al), I can't tell you enough how you've helped me through this and how much I love you.

LAST DOCTOR'S VISIT
My blood chemistry was improved this week, except my tumor marker CA19-9 was up to 2280, up from 1800 the week before. Red blood cells were up almost to normal, so I didn't have an Aranass shot this time (to stimulate red blood cell production). Dr. Bergen says he is very encouraged about how my cancer is responding to the chemo. He also contacted Mayo Clinic about clinical trials, but it doesn't look like anything is open right now of interest. (Mayo does have the Avastin & Tarceva Phase II trial, so if any of you reading this are new cholangio patients, you may want to check that out.) Dr. Bergen and my surgeon at CU Med Center discussed some ablation methods that involve heating or freezing tumors or planting radioactive seeds in certain arteries. There's no evidence that any of those would extend life, and the procedures involve surgery, so for right now, we are not considering those. I have no desire to go through surgery again unless absolutely necessary.

I did get a bigger dose of Gemzar this week, and I'm feeling pretty good, except some pain in my abdomen and hip which could be side effects of the Xeloda and Araness. I have been taking my Xeloda in pill form each day, but I suspended it on Friday becasue my feet blistered up on me. I did a twelve hour day in the bookstore, and that usually will bring the foot problems on. It's getting better today, so I think I can go back to the Xeloda tomorrow. It's the Xeloda that we think is really doing the trick, so I try to stay on it as much as possible.

THE ELKS REFINISHED THE BOWLING LANES!
I bowled a 94, 92, and 81 in my three games on Wednesday night. I made a concerted effort to bowl the best I could, but the Elks had the lanes professionally resurfaced. I think they are still warped, but my ball just wouldn't go down the middle. I tried all kinds of thing, but to no avail. It's okay though, since I was setting my handicap. I wonder if they mounded up the middle boards a little bit with extra surfacing and that's why my ball would go left or right. Of course, it could be my floppy wrist. In the third game (the 81) I tried backing up and throwing the ball harder, but I had less control. My hip was hurting that night and I couldn't get as low as usual when releasing the ball. I did pick up one spare with a slight split that felt really good. Bottom line - it was so much fun to bowl again! (With the new smoking laws in Colorado, the Elks Lodge is nicer - the smokers have to go outside.)

I won't get to do my radio show today as I have a rehearsal for the "Vignettes of History" fashion show, a benefit for the local museum. I'm portraying Verena Jacobson who was born here in 1907. She just passed away this year. She taught school in Sneffels up by the Revenue Mine and had to walk to Ouray in the snow to be home on Christmas.

Last night was Oktoberfest here in Ouray and the winner of the jeep was a man from Dewey, Arizona who has been buying raffle tickets for 20 years at the Variety Store.

I'm almost done reading The Utes Must Go by Peter Decker, and I give it a thumbs up. It is a well-researched account of the political climate both of Colorado and the U.S. leading up to the Meeker Massacre and the subsequent expulsion of the Utes from Colorado.

Just up here in Colorado enjoying the very last days of fall. We're supposed to have snow on Wednesday. They say our winter is to be wet, but warmer than usual.

Sincerely, Caroline

Bowling and Chemo on Wednesday

2006-10-02T09:52:00.000-07:00

My bowling league starts at the Elks on Wednesday night! I'm really looking forward to it. I only got to bowl a few weeks last fall before all this cancer stuff came up. I didn't get to do the "No-Tap" league last spring either. (In No-Tap, if you knock nine pins down on the first ball, it counts as a strike. I love that.) I also have chemo Wednesday so hopefully I won't be delayed getting to the Elks Club on Wednesday night. I'll get to bowl on steroids! (Before chemo, they give you a steroid which always gives me good energy for two days.)

Speaking of energy, I've been feeling better lately except for that pain in my lower left abdomen. I haven't been so tired, and the flu-like symptoms are gone. The pain in the abdomen is something I've had for 16 years. I've been told that it's scar tissue on my ovary, ovulation (not the case now!), spastic colon, or a cyst in my ovary which I've seen on an ultrasound. It was a perfectly round bubble. I could be a level if there was a window on my ovary. The cyst sometimes goes away. At first, I thought this pain was spastic colon when it came back recently, but after reading about it, I don't think so. I think it's the cyst in the ovary. Anyway, Tylenol has been helping that.

I don't think I'll try to do tap dancing this fall as much as I want to. The Xeloda makes my feet swell and get sore, and I just don't think that will work for me. (I have been religious about putting bag balm on my feet twice a day, plus on my hands and night and wearing gloves to bed. This has helped tremendously.) Tap class is up in Ridgway, and I'm into things that are closer to home. I just don't get to fling myself into life like I used to.

The Elks Club is half a block from the bookstore and two blocks from home. The bowling alley only has two lanes, and we have to hire local kids to do pinsetting. There are these old-fashioned lights over the lanes. It's like an antique bowling alley - the lodge itself is over a hundred years old. The lanes are warped which I like because sometimes I find the groove and bowl really well (for me). Also, I think the ball stays out of the gutters because of the warped lanes. My average used to be about 115. Since I haven't bowled in a year, I'll be lucky to start out over 100, but hey, that just means my handicap will be higer.

I have two 10-pound bowling balls. One I had especially drilled for me, the other I got from my neighbor (who is C.W. McCall's daughter-in-law) at a garage sale for$1.00. The dollar ball will curve if I throw it just right and hit the head pin at an angle. The other ball rolls straighter and is good for picking up spares. I tend to flip my little girly wrist so throwing a straight ball isn't easy for me.

I was in a writing workshop all weekend and got some good feedback about my memoir I'm working on about having cancer.

The weather was beautiful here this weekend and the fall colors are stil good, so we had lots of people in town. I have to work quite a bit at the store this week as our main employee, Elwood, is taking time off for his wife's knee-replacement surgery. I'm hoping all goes well for Roseana whose surgery is today.

So I better scoot. Happy Autumn to everyone! Just up here in Colorado excited about hurling those bowling balls.

Sincerely, Caroline

Liver Enzymes Up, White Blood Cells Down

2006-09-27T18:23:00.000-07:00

I had chemo yesterday afternoon and got to attend my cancer support group in its entirty in the morning. It was a really good session, and the women in the group are just wonderful.

My oncologist is off on Tuesday afternoon, and when my bloodwork came back with the enzymes up out of the normal range and the white blood cells down, the nurse had me see the on-call doctor. Also, I sometimes have a spastic colon and it has been kicking up lately. I have had some bone pain in my left thigh which may be from the Araness stimulating the bone marrow, or I may have pulled a muscle lifting some heavy bags on Sunday. My platelets are still above normal.

Anyway, I was cleared to have my Gemzar at a lower rate. I had gone back on my Xeloda on the 18th, but by the end of the week, I had tapered off due to my feet swelling. I spoke to the triage nurse this morning and she got me caught up on what to do next. I need to start back on the Xeloda which I did today - the swelling has gone down in my feet. My white blood cells weren't down enough to require medication. I'm to take some Tylenol or Ibuprofen for the leg pain. I took Ibuprofen, and actually it hurt more after that.

And now for some good news. My tumor marker was down to 1544 last week. It has been up over 2,000 for the last six weeks. It went back up to 1800+ this week, but that is consistent with the liver enzymes being up.

I see Dr. Bergen next Wednesday, and he says he's been in touch with Mayo Clinic so I'm anxious to know what he has to say about that.

I have been feeling better this week. Not so tired. My red blood cells were up this week which I think is the result of the Araness shots. Appetite is still good and weight has stayed remarkably steady - about 145 pounds. When my thigh hurts, it does hurt to walk.

I'm getting an Rx for a numbing cream to put on my port before they poke it each week. The ladies in the support group told me about it. The port is great, but it does feel like someone's sticking a thumb tack in you when they access the port. They said the cream keeps it from hurting when the nurse comes at you like pin-the-tail-on-the-donkey.

The weather has been beautiful the last few days - clear, warm, sunny. The snow didn't stunt the leaf colors very much, nor knock the leaves off the trees.

So I'm just up here enjoying the fall and getting back on those meds!

Thanks as always for all your prayers and support.

Sincerely, Caroline

Liver's Happy Again. A Foot of Snow Last Night.

2006-09-22T17:28:00.000-07:00

I would have posted this morning, but we were without power until this afternoon due to a foot of snow that fell in town overnight. With the leaves still on the trees, the heavy, wet snow broke many tree limbs, and I'm sure took many power lines down with them. We didn't open the bookstore until about 2pm today. I would have posted yesterday, but I was in meetings all day for various things, so I am finally getting to the blog.

I spent the morning unpacking my bag from Denver, and moving summer clothes to the spare bedroom and moving sweaters to the front of the closet. Robert built a fire downstairs, but came upstairs and said his feet were cold. So we crawled in bed with the cats to stay warm and took a nap at lunch time. Robert had checked on the bookstore this morning and sent our employee home because the power was out. He came down again about 2pm to find that there was power on Main Street, but we didn't get it on at home until about 3pm.

Robert took me to chemo on Wednesday in Grand Junction. I was bracing for some bad news as I have felt so crummy lately and was off chemo last week, but my liver enzymes have fallen back into normal ranges and my platelets were actually ABOVE normal. I had been taking Tylenol or Ibuprofen almost everyday last week, and I try to get by with only one or two per pills per day. I didn't know if this would affect my blood chemistry, but apparently not. My red blood cells were still low, so being anemic may have contributed to the flu like symptoms last week. Anyway, we were pleasantly surprised at the results. I did get another shot of Araness to help the red blood cells.

I did look into some clinical trials and spoke to a woman at Mayo Clinic. She told me about an organization called The Emerging Med. They can do searches for clinical trials at no cost. They are also approved by the American Medical Association. Their phone number is 877-601-8601. They have a website at emergingmed.com.

We looked at the website Wednesday with Dr. Bergen. He was impressed with some of the people on their medical advisory board. Dr. Bergen said my bloodwork looks good enough that I could probably go off chemo for a month in order to get into a clinical trial, so we are weighing that option. We'd like to stick with the Xeloda since it seems to be working, but I may not have this opportunity again. Of particular interest is the Avastin & Tarceva trial which the lady from Mayo Clinic said they would be offering. She said she would call me back, but I haven't heard from her.

I have pretty much been told by both the Astra Zeneca people and Mayo Clinic people that I would not be eligible for the AZD2171 trial. (Different clinical trials are sponsored by either the drug comapany or Mayo Clinic.)

I have been feeling better since chemo on Wednesday. The steroids help, and the Araness may be working as well to get the red blood cells back up. I started back on Xeloda on Monday and am tolerating it pretty well.

So that is where I'm at. I made chicken green-chili soup last night, so it'll be nice to have a bowl of that tonight. I better run. I have a store full of people and books to shelve.

Just up here in Colorado, not quite ready for the snow yet. Hope it melts tomorrow! As always, thanks for your prayers and warm wishes!

Sincerely, Caroline

Greetings from Denver

2006-09-14T14:17:00.000-07:00

Robert & I are in Denver for two reasons. We have a booksellers trade show this week, plus Robert has a booth at the Denver Gem & Mineral Show. Normally, these two events don't fall on the same weekend, but this year they did. So we are dividing and conquering. It was during this book show last year when I first noticed some rather minor symptoms which made me think I might have gall stones. I first went to the doctor last year on September 28th. My life has been quite different since then.

I'm actually playing hooky from the book show at the moment. I should be downstairs at one of the educational seminars, but I'm feeling a little yucky - queasy with flu like symptoms. I probably didn't have enough food in my tummy when I took my morning meds. I've gone off the Xeloda again as my feet started swelling up, peeling, and hurting. I was up to 3/4 of the dosage. I didn't have my Gemzar infusion this week since we were going to be out of town.

We're staying at the Marriott in the Denver Tech Center and I'm enjoying our nice room - the book show is here at this hotel. I hadn't had a chance to check the cholangiocarcinoma.org website or update this blog, so I figured this is a good time to do it. Robert is out at the Merchandise Mart setting up his booth for coloradominerals.com, a website business he has for selling minerals. We're bummed that we had to split up this weekend.

I've been feeling "yucky" a lot lately. Last Sunday, I didn't do my radio show. When I got off work at the bookstore, I just went home and slept. I'm beginning to suspect that the effects of chemo are cumulative. When I first startedwith the Gemzar, I might have one or two days of feeling a little yucky, but now it's most of the week. The queasiness is getting closer to being nausea but not quite. Mostly, I'm just achy, sometimes cold, sometimes hot, headache, tired - like having the flu. Then my feet want to swell up and that can be slightly painful. However, I know compared to a lot chemo regimens, the side effects of mine aren't so bad. I'm actually beginning to like infusion days when I get my steroid pills because I feel good and have lots of energy the day of chemo and the day after. I'm learning that I need to schedule some down time when the slump comes.

Last Saturday, I had a booth at Lupita's Bizarre Bazaar which is a flea market in Ridgway, the town north of Ouray. It is a fun event, and I got to see lots of people. I made $100 selling odds and ends from around the house: hair-thingies (my hair has thinned and is extremely short - don't think I'll wear a ponytiail again); cologne (I just can't wear some fragances now as they make my stomach turn); purses that I love but never carry - I rarely change purses; make-up that came in an Estee Lauder or Clinique gift program (after they've sat in the bathroom for five years you figure you won't use them). The women were all over the cologne and make-up - it was gone in the first hour. I had a good time, but it probalby contributed to my being so tired the next day.

I found out some things about clinical trials, but I'll put that on my next post as some of that info is at home.

Driving over from Ouray to Denver yesterday, the aspens are about 1/3 golden and it was so pretty. I'm takng pictures of the deer at home and hope to post some pictures when I get the roll finished.

Thanks to everyone for your prayers and good wishes.

Just over here in Denver learning some new things about the independent bookstore business.

Sincerely, Caroline

Increasing Xeloda and Gemzar Slightly

2006-09-05T20:44:00.000-07:00

Robert took me to Grand Junction for chemo today. I got to attend my support group as well where we discussed what we would do if we found out an asteroid would destroy the earth six months from now. I would like to travel, spend more time with family & friends, let someone else save the world, and get one more kitten.

My tumor marker from last week's blood test was down again to 2060. My platelets are back up the normal range - I've been telling them to get back up there plus I visualized my mother hugging me which I think helped. (When I play big band music on my oldies radio show, I tell my listeners that this is for my parents to dance to up in heaven.) My red blood cells were still down so the doctor ordered a shot of Araness (sp?). We increased the Gemzar up to 85% of normal. My liver enzymes creeped up a wee bit this week, so I'm increasing my Xeloda dosage to 75% of normal instead of 50%.

We are still looking into clinical trials for AZD2171, but the only one that I think that will take cholangiocarcinoma (CC) patients is in England which I'm not opposed to - after all, I do want to travel. I also found a clinical trial for Avastin and Tarceva. I know both a CC and a pancreatic cancer patient who have done well with Tarceva. This trial is in Denmark. That'd be cool. If I have to go off all chemo for a month before the trials, we're not so sure that would work - that I can afford that much time off the chemo.

We ordered a headstone for our plot at the cemetery in Ouray County and they are setting it tomorrow. It's actually a bench. We'll have a great view from our spot. We're both going to be cremated and they'll put our ashes in the legs of the bench. I told Robert if he remarried and died before his new wife, to ask her if I could have some of his ashes over in my plot. Hope she won't mind.

The aspen leaves are just beginning to turn, while other trees in town are getting quite yellow. The kids started back to school today and we passed groups of them walking to school as we headed out of town to Grand Junction. We have lots of mule deer that hang out on our street in Ouray and the fawns are losing their white spots. I'll try to get a picture on this blog.

Just up here in Colorado enjoying the last days of summer and talking to my body - the tumors, the chemo, the red blood cells and platelets. I think it helps.

Sincerely, Caroline

Liver Enzymes Up Slightly

2006-09-02T18:31:00.000-07:00

I went for chemo last Thursday. First, I got my stitches taken out from the port implantation. The port does make things so much easier for blood draws and infusions - I'm so glad I had it done. My bloodwork was about the same as before. My red blood cells and platelets were up just a notch, but still low. So I got 75% of the normal Gemzar infusion.

My liver enzymes were up slightly. I've been taking Tylenol to deal with the achy, flu-like symptoms of chemo, yet it is hard on your liver, and Dr. Bergen said that could account for the slight bump. Aspirin and Ibuprofen are not options as they cause your platelets to drop and mine are running low.

We are looking into clinical trials for AZD2171 which is supposed to be the next generation of Avastin. Unfortunately, there doesn't seem to be anything offered in the States that a cholangiocarcinoma patient would be eligible for. However, there is a trial in England which is testing AZD2171 and high blood pressure side effects. We may also look into applying for compassionate use of AZD2171.

Robert & I had a quick trip over to Denver Thursday night. We had a delicious dinner at a vegetarian Asian restaurant with Robert's son. Then we watched the MTV Video Awards with Ian so he could explain to us who everyone was and whether he thought they were any good. We went to our mineral sale on Friday morning. They had a bunch of books, too, so we came back with a truckload of rocks and new titles for my used book section.

There's lots of people in Ouray for Labor Day. I'm at the bookstore, and we have a local author reception tomorrow. I invited six local authors and two others are attending as well.

I felt good the last two days which is typical as they give you steroids before the chemo. I had a hard time sleeping Thursday night and took a Benadryl to help, but it didn't do much. Today, I'm feeling my chemo slump, but I toook Tylenol at lunch and it helps. Kelsey, our young high school employee, worked today, and I was able to process a lot of the used books into inventory.

I will do chemo next week on Tuesday which means I can go to the Grand Junction support group again, and I'm looking forward to that!

Just up here in Colorado, talking to my platelets and red blood cells, telling them to get back up there!

Sincerely, Caroline

Back on Xeloda, Tumor Marker Down

2006-08-29T21:18:00.000-07:00

My tumor marker was down to 2180 last week. Two weeks ago it was 2818. It is still way above the normal range which is something like 10 - 50, but it has trended downward since I started Xeloda in late June, so we are encouraged.

I have been very tired since last Friday and have had some flu-like symptoms. Still, I worked all day Saturday. I said to myself, you have to do the bookstore today - just do it. A young girl in town named Kelsey who's in junior high came in to work and she was a big help. She ran the register and I was able to get a lot done. I also did my radio show on Sunday afternoon. Now that I'm on Xeloda, I think of the song by The Clash called "My Sharona", to which I sing "My Xeloda". I told my listeners it's a song to fight cancer by.

I started back on the Xeloda at half dose on Sunday. I knew if I were working in the bookstore all day on Saturday, that it might aggravate the hand-foot syndrome if I started sooner. So far, so good - my feet aren't swelling.

Today, I was really tired and had flu like symptoms, but I had to go into the bookstore at 2pm. I took some Tylenol and Immodium and felt much better this afternoon. Once I got to work I felt better - I think the over-the-counter meds kicked in. My appetite was really good tonight so I had a nice steak dinner.

I have chemo on Thursday morning at 8:15am. We'll leave from Grand Junction that day for Denver to attend a mineral sale Friday morning, then we'll head back home to Ouray afterwards. We'll get to see Robert's son Ian for dinner Thursday night. Ian graduated from Colorado State University last December with a degree in art and got a really good job in Denver last February. We are very proud of him. He graduated magna cum laude.

I am pooped and need to hit the hay. We have a meeting at 9:00 am to renew our lease at the bookstore.

Thanks again to everyone for all their support.

Just up here in Colorado enjoying some sunny weather. It finally quit raining here.

Sincerely, Caroline

Platelet and Red Blood Cells Low

2006-08-23T21:23:00.000-07:00

We went to see the oncologist today in Grand Junction. I can't tell you how much I like my new port. The blood draw was so easy. My liver enzymes continue to look good - my liver is still happy, but my platelets were low for the first time and my hemoglobin was the lowest it's been ever (I think). My weight is holding steady, and my blood pressure was low - 94/59. I was really tired over the weekend. I didn't even do my radio show on Sunday. I was so tired when I got off work, I just came home and slept all afternoon.

They reduced the amount of my Gemzar by 25%. My feet are still somewhat swollen so I can't start the Xeloda yet, and when I do I'll go back on, it'll be at half the dosage. We may start the Avastin next month. It kind of depends on how I tolerate the Xeloda. Dr. Bergen is anxious for me to get back on the Xeloda as he feels it is making the difference.

I asked Dr. Bergen about Essaic tea and milk thistle. He said while I'm on chemo, he doesn't want to take a chance on any herbal remedies interfering with it.

I'm hoping to get back on the Xeloda this weekend, and I have another Gemzar infusion next week on Thursday.

I'm thinking about all the other cholangiocarcinoma patients I correspond with, and I'm hoping and praying that we all come out our illness or move through it as painlessly as possible.

I am pretty wiped out, so I'll end this now. Thanks for all the prayers, love, support, and good wishes! And my best wishes to you!

Just up here in Colorado, embracing the medications.

Sincerely, Caroline

Feet Swollen - Xeloda Suspended

2006-08-20T09:52:00.000-07:00

I got two and a half days on my recent round of Xeloda, but my feet got swollen and too tender to walk on, so Dr. Bergen told me to take a week off from the medication or until my feet are completely back to normal. My hands have been puffing up, too. This morning I couldn't get my wedding ring on. We had hoped to go four days with the Xeloda, but it just isn't gonna let me do it. That's okay, when there's side effects, we know the stuff is working.

Yesterday, I took a nice long nap in the afternoon. I have days where I just get really pooped out. I have a couple of incisions from the port implantation, and those will take about a week or so to heal up. I'm trying to stay off my feet and let the chemo do it's stuff.

We started a cancer support group here this week in Ouray. Four people came to our first meeting. We plan to meet once a month.

We've sure been having mushroom weather. Lots of rain and just the right conditions that there's tons of mushrooms in the mountains this year. I can't keep mushroom books in stock and the publishers and distributors are out as well. We bought several Colorado mushroom books at Barnes & Noble in Grand Junction last week just to have them since the mushroom festival was in Telluride this weekend.

Just up here in Colorado enjoying the last days of summer.

Sincerely, Caroline

A Happy Liver

2006-08-16T22:58:00.000-07:00

I had a port implanted this morning, and we used it this afternoon for my Gemzar infusion. It was much easier than getting chemo through a vein in the arm as the Gemzar sometimes hurts as it is going in. Robert & I have named my port, "Portia".

I had a bad bout of hand-foot syndrome over the weekend which is caused by the oral chemo medication, Xeloda. I didn't get to see as much of the rock swap last Friday as I was hobbling around on sore feet. I still have symptoms, but my feet are much improved, so I started the Xeloda again yesterday. My feet are acting like they want to swell up again, so Dr. Bergen advised me to do four days on and two days off.

And now for the good news. The nurse pulled up my blood test results on the computer and said, "Is this really your blood work?" She said it had never looked so good. Usually, a bunch of items are flagged as being out of range and this week only one thing was high, but it was close to the top of the range. Dr. Bergen said this indicates my liver is happy. He felt my liver and said some of the enlargement has subsided as well. I did fall slightly below the anemic borderline again, but the liver enzymes are still improving. My weight is holding steady as well. They didn't have results on the tumor marker and one other thing they look at each week, but hope to have those results soon.

Thanks everyone for your prayers, love, thoughts, and positive energy. I think it's working.

Just up here in Colorado with a happy liver.

Sincerely, Caroline

Mostly Good News

2006-08-10T23:56:00.000-07:00

My scan and visit to the oncologist went well on Wednesday. My blood work continues to look good, and while my scan had "mixed responses", we are generally pleased with the results.

We got to look at my current scan compared to the last scan in May. Some of the tumors remained the same, some might have actually shrunk, some look less dense, and some did grow, but not by that much. My oncologist feels the Xeloda is really making the difference. He says these are the best results we could hope for. He keeps reminding me that I will not be cured, we're just hoping to increase my life span, to slow the disease progression down, and it looks like we're making steps in that direction.

I did have the infusion of Gemzar as well. I started back on the Xeloda last Sunday and should have taken my last dose tonight for the week, but my hand-foot syndrome is kicking up. My feet are red, swolen, sore, and peeling, so I decided not to take any more Xeloda for a few days.

I am having a port inserted next week. They usually have to poke me two to five times to draw blood and get my IV for chemo inserted. I'm very squeamish, so I'm ready to have the port. This enables them to easily access a vein near the collarbone. I can still go swimming or soaking in the hot springs with this. It has a slight risk of infection.

Dr. Bergen doesn't want to start the Avastin until the port has been in a week or two as it will also inhibit healing along with the two chemo drugs. Again, the risk of infection is small, but if it happens, it's hard to get it to healed.

I am no longer anemic. My blood counts had me above the borderline this week. I had a big steak dinner the night before the blood draw - don't know it helps, but I've been adding more red meat to my diet. I need to call and get the results of my tumor marker. Weight is still good, down a pound, and no temperature. However, I felt hot today, my face was flushed, and my feet got red and sore. These side effects mean the chemo is working. Also had a bout of the D-word.

We are headed tomorrow to Buena Vista for the Contin-tail (a tail gate rock swap on the Continental Divide). I have never been to this outdoor rock swap before so I am looking forward to it. Unfortunately, we don't have any help in our shops tomorrow night, so we'll have to come racing home.

This week on my radio show, I am doing a program to celebrate the 37th anniversary of Woodstock. The president of our Woman's Club was there, and she will be one of my guests to tell what it was like. She also has a cousin who was partners with Bill Graham in the Fillmore concert halls, so she got to go to a lot of concerts in the 60's and 70's. She was in the back row of a concert when Eric Clapton premiered Derek & the Dominoes. A guy came in late and sat down next to her, and after he left she realized it was Bob Dylan. Another man in Ouray who buys a Sunday paper each week at the bookstore also went to Woodstock, but found it so miserable after the first day that he left. He was also an extra in the film Alice's Restaurant. He is very shy and I'm having trouble talking him into doing the radio show. I told him just to come down to the station, sit in the back, and just yell out things in the background. I have also spoken to C.W. McCall (Convoy was his big hit in 70's during the CB craze, "Ten-Four, Rubber Duckie"). He lives here in town and he said he would do my show sometime.

All for now. Just up here in Ouray, trying to stay off my aging hippie feet and get the swelling to go down.

Go chemo, go chemo, go chemo!

Sincerely, Caroline

Live from Ouray - Last Thursday Night

2006-08-08T20:54:00.000-07:00

This is what I look like when the nurse takes my blood at the oncology center.

Actually, this is a melodrama picture from the actual performance. In this scene, I have a sprained writst from signing autographs, my arm is in a sling, and I just got smacked by Wanda Ketchum's purse.

I also look like this when I think about how much housework I have to do at home (people who have been to my house can tell you it's horrifying) plus paperwork and other things to do for the bookstore.

More later, Caroline

Scenes from a Happy Summer

2006-08-07T15:53:00.000-07:00

Here's some pictures from the melodrama, Taos, and with sisters and cousins in Ouray.

My husband Robert took photos during the melodrama and I hope to post some of those later.

Upper left - Mary Pickaxe complete with pantaloons.

Upper right - Jody & me in Taos during the writing conference.

Middle left - Me in the middle in pink, my sister Diane just to the left, sister Suzie on right,
our cousins and Aunt Ruth from eastern Nebraska - nice of them to come all that way to see me in the melodrama. Also appreciate my cousins who came from Kansas City (Shirley, Anita, Jessica), brother-in-law Al from Albuquerque, and friend Diane King who came from Denver.

Bottom left - Aracania Webb (locally known as Jill Mort) and Mary Pickaxe (me).

Wednesday this week is a big day for me. I've got a scan at 8:30 am in Grand Junction. Then a blood draw at 9:45am, then see the doctor at 1:00 pm with chemo after that. Dr. Bergen says we should be able to get an idea of the scan results by the afternoon,
although the complete report won't be ready yet. Also, I'm sure the scan will give us some direction on when to start the Avastin.

Last week I was off chemo for the melodrama. I started my Xeloda again yesterday. I told Dr. Bergen he could make as sick as he wants to after the melodrama.

Must scoot - have friends in town that we're meeting for dinner.

Just up here in Colorado hoping for good scan results on Wednesday.

Sincerely, Caroline

First Performance Was a Success!

2006-08-03T08:25:00.000-07:00

Last night was our first of three performances of the melodrama. Things went quite well, and we had a full house.

At our last few rehearsals, we were still making mistakes or forgetting lines, and some of the gals were getting tense. This is my fifth melodrama, so I know it always feels disorganized and crazy in rehearsal, but it all comes together once we have an audience. There were a few flubs last night, but nothing major. At the dress rehearsal on Tuesday night, I went totally blank at my opening scene. I couldn't remember my first line which I have rehearsed a million times. Better to forget at dress rehearsal than at the actual performance.

I did make one mistake in my costume changes. I have one scene where I fall off the ship and then come on back on again all wet, covered in seaweed, etc. I have a really short time to change clothes, wigs, and get enough water on me to be dripping wet. I had gone off stage after the first part of the scene and started changing quickly into my wet clothes and then realized I hadn't fallen off the boat yet! I still had to do one more scene in regular costume. So I was frantically changing back into my regular clothes and managed to get dressed in time. They don't give me the dumb blonde parts for nothing.

I hope to have some pictures to put on the blog by tomorrow. My cousin took pictures last night, and we'll probably get some more this evening.

Just up here in Colorado enjoying my week off from chemo and having my family in town.

Sincerely,
Caroline

More Good News

2006-07-28T20:09:00.000-07:00

Sorry it has taken me a while to post. This is one of the most hectic weeks of the summer. I'm in a writing workshop here in Ouray, plus rehearsing the melodrama.

The writing workshops are wonderful. I have a start on a memoir about having cancer, and I think a short piece can be lifted from it as an essay that I can submit for publication in the near future.

I have a bunch of family coming in next week for the melodrama, and it will be fun to have them here. Next week I won't do any chemo. I won't have the Gemzar and I won't take the Xeloda, because I want to feel good for the melodrama and all the family coming to visit.

I did find a great wig on the internet for my role as Mary Pickaxe. I'm also having a pair of pantaloons made. I'll try to get a picture to put on this blog next week of me in full costume.

CHEMO ON WEDNESDAY - MORE GOOD NEWS
At my blood draw this week, another one of my liver enzymes fell in the normal range. My weight is stable. I had no temperature this week (I did last week). My CA19-9 tumor marker was down a hundred points. Hemoglobin 12.0, up from 11.7 last week meaning I'm now only one point below the anemic borderline. Blood pressure was something like 98/67, somewhat on the low side for me, but the nurse still says is fine. Today should be one of my slump days after chemo. Last week, I had chills, slight fever, slight queasiness, and fatigue. Today, I'm mostly just tired. Again a wee bit of queasiness, but I don't feel like I have the flu like last week. I'm back on the Xeloda, the oral medication - having a slight bit of hand-foot syndrome. The oncologist feels it's the Xeloda that's making the difference. We're still thinking about the Avastin for the future.

NEXT SCAN IS AUGUST 9TH
I next see the oncologist on August 9th and we're going to do a CT scan in the morning before I get chemo in the afternoon. I'm sort of dreading the scan because I don't usually get good news. But I feel pretty good and despite what they say is going on in my liver, I just focus on what I want to accomplish in the short term. I'm hoping in August to get our house cleaned up and caught up on some bookkeeping. I also want to get working on this memoir in earnest.

Just up here in Colorado getting some good news and being dramatic.

Sincerely, Caroline

P.S. Lyle Lovett was incredible last week. The Subdudes only got to play for about 30 minutes due to problems with the sound system. Bummer.

Some Good News; Thanks to Jody for Going to the Conference

2006-07-19T06:45:00.000-07:00

GOOD NEWS
I saw Dr. Bergen yesterday, and I will see him again next Wednesday. He said my blood test from yesterday showed that some of my liver enzymes, which had been elevated, had decreased substantially, one even falling back in the normal range. He was very excited, and needless to say, we were, too. The CA19-9 tumor marker was 3021, up from the 2880 last time, but still down from the 3600+ in June. He attributes the falling liver enzymes to the Xeloda, so I'm going to try to take that again, but only take it five days with two or three days off. He did caution me that all these blood counts will go up again someday, but for right now, we are encouraged.

My hemoglobin was 11.7, weight 66 kilograms (about 145 pounds), blood pressure 105/70. They only had to poke me twice to get my IV started. (I have banned Robert from standing over the nurses when they do this as I think it makes them nervous and harder for them to do. I'm trying to get braver about the blood draws and IV's. I may request a port at some point.) We also talked about looking for new clinical trials. And, we are keeping Davanat on the back burner and applying for compassionate use of that drug, which is in clinical trial testing, as a back-up plan.

So I had my Gemzar infusion yesterday and will start my Xeloda pills today. We also discussed Avastin which if we add to the mix, I asked if I could start it the second week of August because my schedule is very hectic the next two weeks. (More about that below.) But we're going to add back Xeloda for now, see how that is tolerated, and add Avastin if the Xeloda doesn't work out. They both work on reducing blood vessel growth.

WRITING WORKSHOPS PAST AND FUTURE, LYLE LOVETT & MEXICAN FOOD
I had such a wonderful time in Taos at the writing workshop last week that I have to wonder if that helped my blood work, too. I owe a debt of gratitude to my good friend Jody Curphy of Denver for driving me there and back and being there with me. I was a little nervous about being there alone and having some health issues come up. I had some minor stuff - swollen and painful knees and ankles, the D-word (diarrhea), mouth sores, a few other little things - which probably would have made me anxious and not as able to concentrate on writing. Jody and I also had a good time hanging out together, catching up on old times, and comparing notes on where we're at now in life. We met back in 1985 at an 8:00am Saturday morning speech class. We did go to the Sanctuary at Chimayo and I got some of the sacred dirt there, lit some candles, said some prayers. I rubbed the sacred dirt between my fingers to get all the clots out and visualized rubbing the tumors out of my liver.

We have a writing workshop next week in Ouray. I'm doing two creative non-fiction classes - one with Lee Martin, the other with Lee Gutkind. They are both marvelous writers and instructors. So I am very excited about that. I will have to miss one class to go to chemo, and one class on Saturday afternoon as we have tickets to see Lyle Lovett in Telluride on Saturday night.

I saw Lyle once at Red Rocks in Denver back in 1993 right after he'd married Julia Roberts, and of course, he was fabulous. (I think Julia screwed up when she let him go, but I'm sure there's another side to that story.) Robert discovered my Lyle Lovett cassette tapes once while he was on a trip to Denver and had nothing else to listen to, so he is a big fan as well. He really likes the song about "She's no lady, she's my wife." I'm not sure if he identifies with it because of his ex-wife, me, or both of us, but I tell myself it's the former. I love his song about the pony on the boat and also that one about nobody knows me like my baby - "I like flour tortillas." Actually, I prefer corn because I grew up on Tex Mex. We have good Mexican food out here, but it's different, and I have to confess I don't like Mexican food the way I used to - I guess you can get your full of it. (At the writing workshop in Taos we got fed a lot of New Mexican-Mexican food which may have caused my D-word.) But, when I get to Texas, I have to go to El Fenix or El Chico, and bury my face in a plate of enchiladas and cheese tacos. Great comfort food!

MELODRAMA
We are in heated rehearsals and preparations for the melodrama "Perils on the High Sea" coming up August 2nd - 4th. My sisters, brother-in-law, several cousins, possibly an aunt and a friend from Albuquerque are coming - a total of 10 - 12 people. I'm working on my subtext and motivations to portray Mary Pickaxe, as well my costume. If anyone has any thoughts on where I can get a Mary Pickford wig or even a Shirley Temple, let me know. We have a well-used blonde wig from when I was last in the melodrama and played nurse Ivy Dripp, but there's a scene where I fall off the ship this year and have to be on stage all wet so I think we'll need that wig for my drenched appearance.

Lots to look forward to in life. Keeps me going. Tumors be damned. I think Robert's mother and sister Jane may come later this summer, and we hope Robert's son Ian can drive over from Denver while they're here. By the way, Ian is doing really well and enjoying his new job in Denver and still doing some fine art as time permits.

Just up here in Colorado with new hope again, well immersed in my "Carolineland" with my acting and writing, grateful for my wonderful family, friends, and community. Life is good.

Sincerely, Caroline

Greetings from Taos

2006-07-12T13:27:00.000-07:00

I am on vacation from chemo this week, but I am having some swelling in my ankles and knees. The Peterson Family blog said that low hemoglobin could be the culprit and mine has been just below the anemic line. My CA 19-9 tumor marker was back down to 2800 something last week. When I go back next week, I know Dr. Bergen wants to start Avastin, but I don't know how soon, I'm guessing the day of the appointment.

Otherwise, I feel pretty darn good and have a good appetite. In fact, I think I've gained some weight. I do have some pain in the joints from the swelling, some in the abdomen from the enlarged liver pressing on the liver's capsule or membrane. Or could it be the inner incision from the surgery or from the tumors? Anyway, we won't really know how the chemo is working until the next scan which Dr. Bergen wants to do after the next chemo cycle. He says the bloodwork also helps him monitor where we're at. My billirubin and liver enzymes have been okay. Some other blood chemistry related to the liver is up, and he's watching that. The tumor marker gives him some indication of disease progression but isn't entirely reliaable.

The writing conference is great! I had a screenwriting class last weekend and this week I'm in a beginning memoir class with Barbara Robinette Moss. Her memoir is Change Me Into Zeus's Daughter, and now she has a second one entitled Fierce. I've read the first one and it was so good. She is a wonderful instructor. In fact, I need to get back to my writing.

I went to Taos Pueblo on Monday, something I'd never done despite having once lived in New Mexico and having visited here many times. I said a little prayer in the Pueblo church for myself, othere cholangio patients, and for everyone I know. Then, I bought myself a few trinkets in the shops including a storyteller figurine to help inspire my writing.

Just here in Taos writing about my cancer experiences. Maybe I really will get a book written before I leave this world.

Sincerely, Caroline

Xeloda Suspended, Avastin Coming, Headed to Taos

2006-07-05T23:32:00.000-07:00

I had my seventh infusion of Gemzar on Monday and get next week off of chemo - yeah! I was taking Xeloda orally until this morning. I developed mouth sores and hand-foot syndrome. (It probably didn't help that I worked 13 hours yesterday in the bookstore although I tried to stay off my feet. The Fourth of July is one of our biggest retail days of the year, so I really needed to be there from open to close, but I did have some help, too.) Anyway, Dr. Bergen said that I should quit taking the Xeloda due to the side effects, but he has gotten Avastin approved by my insurance company which he wants to start when I resume chemo week after next. I believe it will be a drug delivered intraveneously as well. It's my understanding that it is used mostly for colon cancer. I'll find out more on July 18th.

I am headed to Taos, New Mexico for a writing workshop, and my good friend Jody (from Denver) is going to drive me there and stay with me during my week of classes. I'm taking beginning screenwriting and beginning memoir. I'm planning to work with the film class from Ouray High School next year on a film about my cancer experience. Robert will drive me to Salida on Friday, and we'll meet Jody there and have lunch with our friends Barb & Pete who live in Salida. I'm very grateful that Jody is willing to be my travelling companion.

I have had that queasy feeling somewhat today and some tiredness, but not as bad as in some past weeks. They took blood on Monday for the tumor marker, but as of this morning, they didn't have the results yet. Hemoglobin is back down to 11.7.

It's been raining here which is a good thing. The fireworks were beautiful last night.

Well, it's late and I have a million things to do tomorrow before I leave town. I will try to keep my blog updated while I'm gone next week.

Just up here in Colorado selling books - making money while the tourists are here!

Sincerely, Caroline

Xeloda Added to "the Cocktail"

2006-06-30T09:44:00.000-07:00

As in Bridget Jones Diary . . .

Weight: 65 kilograms (about 142 pounds)

Alcohol Consumption: 0, Cigarettes: None for a long time

Hemoglobin: 12.3, up from 11.7 last week (normal 13 - 16)

White blood cells and platelets are normal.

Tumor Marker CA19-9: 3358 (normal 0 - 37)

I had my sixth infusion of Gemzar (gemcitabine) this past Tuesday. My oncologist added Xeloda (capecitabin) to my chemotherapy regimen, which I started in pill form on Wednesday morning. The Xeloda has more side effects - I have a headache, heartburn, achy joints, more queasiness, and just really tired. My pattern with Gemzar seems to be that I feel fatigue on Thursday and Friday after chemo on Tuesday, but I come out of it on the weekend. The Xeloda is adding to those symptoms, but so far I've not had any of its more serious side effects (extreme nausea or diarrhea, hand-foot syndrome, mouth sores, fever) which requires suspension of the drug.

My oncologist said I could quit taking the Xeloda next week, as I have a vacation scheduled for July 7th - 14th. I am taking a writing workshop in Taos, NM. I have such a headache today, which is making me cranky, that I don't think I could drive or sit in a class or do much of anything. This morning when I woke up with it, I didn't want to move at all. My cat Biscuit and I lay in bed and watched the hummingbirds. We have a feeder just outside the bedroom window, and each time one would land, Biscuit would make a slight chatter so I'd look up and see the hummer. Biscuit is a yellow tabby that sort of looks like Jabba the Hut - she's a hefty gal - but very good company. Our other cat is Dumplin', a calico, somewhat standoffish, but affectionate in her own way.

We started melodrama practice on Wednesday night. I have a small, but funny part: Mary Pickaxe. Our performances are August 2nd, 3rd, and 4th at 7pm. This is one of those things that will keep me going.

I did just eat breakfast and took all my medicine including some Tylenol which I hope will help my headache. I have felt "foggy" the last two mornings. I hope this goes away because I've got so much to get done. The Fourth of July is coming up which is our busiest week of the year.

I feel like such a chemistry experiment with all the medications I'm taking, but sometimes I think we just have to "embrace the medication" and let it work for us. The morning pill box now includes: Xeloda, Zoloft, Kytril, Prilosec, Tylenol, green tea extract, a multi-vitamin (Flintstones for me), Omega 3, Co-Q-10, and B-6. Most of these are repeated at night.

Just up here in Colorado, embracing the meds, watching hummingbirds and mule deer grazing in the yard, memorizing lines, and waiting for this headache to wear off.

Sincerely, Caroline

Pooped Out!

2006-06-25T07:23:00.000-07:00

Right after my last post when I said my energy had been good, I started getting really tired. I just wanted to lie down all the time. I've pretty much been able to take it easy, but it puts me behind on work for the bookstore. Oh well, it'll still be there. Mentally, I've felt unmotivated as well. This morning, I think my energy level is better. I did read two books this week which is unusual for me. (I know I own a bookstore, but I do all the ordering, bookkeeping, and management, so I hire people who like to read.)

I have had just a little touch of queasiness this week - less than last week. I got my prescription filled for Kytril, but I haven't had to take it. I've been taking papaya enzyme for the slight upset stomach, and it seems to be working. I don't know if it really works, but the little pills taste good. Maybe it's just a placebo for me, but whatever works. There are other digestive issues as well, but I'll spare you those gory details, except to say that I noticed on the Preparation H package that there could be drug interference with anit-depressants. (I started on Zoloft about a month ago after my life expectancy talk with the oncologist.) It's always something with cancer! Turns out I can use both, but I have to use "the H" sparingly and not take it orally. 10-4 ont that one - no sucking the Preparation H out of the tube!

My CA19-9 tumor marker test from last Tuesday showed that it was in the 2800 range which the doctor said was good news. This is up from 2577 from the week before. He was glad that it hadn't shot up into the the 3000's. The normal range is 0 -37.

I went to Silverton yesterday with my friend Jill. We had a great time talking and hanging out. It was a gorgeous day - blue sky, lots of sunshine. The crepe-paper poppies have been in bloom around town and are just outrageously bright and beautiful. Our pots of pansies, petunias, lobellia, dianthus, etc. are in bloom and so pretty, and the hummingbirds are constantly buzzing. The deer have chowed down on the annuals in the front flowerbed, but we still have some blooms out there. Summer is so wonderful here. I don't think the wildflowers have started in the mountains yet. We could really use some rain.

Better scoot. Gotta open the store and do my radio show later today.

Thanks to everyone for your prayers, concerns, interest, and LOVE! You make my life wonderful. To my fellow cholangio patients, thanks for your blogs and discussion group posts - they really help. My best wishes and prayers to all of you!

Just up here in Colorado, listening to the hummingbirds, enjoying the flowers, and grateful for each day that I have in my own little paradise!

Sincerely, Caroline

Five Down, Two to Go

2006-06-22T12:39:00.000-07:00

I had my fifth infusion of Gemzar this week. My blood work showed that my red blood cell count fell below the borderline of anemia, but only slightly. So I was able to do chemo #5 and not have a shot this week. My CA19-9 tumor marker was back up to 2500-something a week ago. It was as high as 3600+ before I got off the clinical trial and fell in the 900 range a few weeks ago. Since it is elevated again, my oncologist wants to add another chemo drug to the mix, possibly Xeloda which is taken in pill form.

I have two more chemo sessions after this, then off one week. I'll be in Taos for a writing conference during that week off.

I got to attend the first hour of my support group last Tuesday, so I enjoyed that.

I realized this week that the oral medication that I take before chemo is a steroid which is supposed to help with nausea. I had trouble sleeping Tuesday night after my chemo treatment which was the case last week. So I'm going to see if it's okay to take Ambien on those evenings to help sleep.

So far this week, I have not had the queasiness I had last time, so I am grateful for that. My energy level is holding up well so far.

We had a good time last weekend in Colorado Springs where I had lived back in the 70's in an old house on Colorado Avenue on the west side of town. My girlfriend Alana and I went up to Manitou Springs (a little further west of where I had lived), and I bought a couple of blouses in a hippie-clothing shop that was playing music from the 70's. It was like I never left Colorado Springs. I also bought a pair of turquoise blue crocs - couldn't resist the new color.

Just up here in Colorado, occasionally dressing like a "damn hippie" (my father is muttering to me from his grave) and wearing those brightly-colored crocs!

Sincerely, Caroline

Chemo #4, Davanat Update

2006-06-16T07:28:00.000-07:00

I had my fourth Gemzar infusion on Tuesday. I forgot to take my routine medications on Tuesday morning, so I took them Tuesday at bedtime. One of my meds kept me up all night. I couldn't "call in sick" on Wednesday as I had a lot going on that day, and really, I felt pretty good despite little sleep.

Wednesday night I slept very soundly. I went to a meeting yesterday morning and never really woke up. So I came home and slept most of the day and slept really well last night. So I feel better this morning. I was just really tired - one of those low energy days.

I also feel queasy, but not really nauseated. I did get a prescription for Kytril, an anit-nausea medication. I had taken it after my first two chemo treatments - the oncology center gave me samples of it. When I went to fill my Rx for it, no one had it in stock. I found out it is a very expensive drug, but I have hit my deductible so I have no copay. So I was able to get on the Kytril yesterday, and my tummy feels better today.

As for Davanat, I spoke to a doctor at the pharmaceutical company and he said that for the new cholangio trial, they only want newly diagnosed patients who haven't had any chemo yet. The doctor also said there's only one cholangio patient that the Davanat was tested on, although she had very good results. My oncologist also talked to the Davanat doctor. He told both of us that it may be better to stick with Gemzar which has some track record other than try a treatment that there's no evidence for yet. The Davanat doctor also mentioned that at the recent ASCO conference, he heard that there's new evidence that Gemzar may work better than originally demonstrated.

Dr. Bergen and I discussed applying for a "compassionate use" of Davanat down the road if my Gemzar doesn't work out. Dr. Bergen said we may add Xeloda to the Gemazar in the near future which is a chemo drug taken in a pill form.

If any new cholangiocarcinoma patients are reading this, I would consider the Davanat trial. There should be more info posted soon on clinicaltrials.gov or contact the drug company at 617-559-0033.

Robert & I are headed to Colorado Springs today to attend a gem & mineral show and to visit friends. We'll be back tomorrow night.

Just up here in Colorado keeping the faith, getting some sleep.

Sincerely, Caroline

Looking into Davanat

2006-06-10T21:11:00.000-07:00

I have been contacted by several people about Davanat which is a carbohydrate compound being tested to lessen the effects of chemotherapy. It has shown promise in early trials with colon cancer and cholangiocarcinoma, not only in lessening the side effects of chemo, but actually shrinking tumors as well. A new trial for cholangio patients is supposed to opening soon (sooner than the several months time frame that I recently heard it would be). My oncologist and I are going to discuss this further at my appointment next week. It may mean that I'll have to quit my current chemo regimen as quickly as possible so I can be off it for the requisite time period before going on the trial. The Davanat has been used in conjunction with the chemo drug 5FU and I think they're considering other chemo drugs as well, but not the gemcitabine that I'm currently taking.

If any of my fellow cc patients are interested in this compound, I would suggest contacting the manufacturer, Pro-Pharmaceuticals, at 617-559-0033. They also have a website at www.pro-pharmaceuticals.com. There has been a cholangiocarcinoma patient who got Davanat through a compassionate use provision.

Otherwise, I have been feeling pretty good - some queasiness, but still a good appetite. I do get really tired sometimes, but for the most part, my energy level has been good.

Just up here in Colorado enjoying the summer weather and spending time with my sister Diane.

Sincerely, Caroline