Sunday, April 30, 2006

Losing My Hair, Not My Religion

I went to the hairdresser last Thursday, and she confirmed what I suspected: my hair is thinning and turning gray. Hair loss is a side effect of the Sorafenib which is a protein inhibitor, not "chemo". Other people have told me that they didn't lose their hair during chemo, but it thinned and turned gray, and then it came back at its regular color. I may end up with a racing stripe of gray hair - I have gray roots right now, but I'm looking forward to seeing what I look like with this new hair color.

I only have one more steroid to take, but I still seem plenty wired. Last night, I didn't take a sleeping pill and I didn't get tired until 3:00 a.m. I was going through clothes, moving winter clothes to the spare bedroom, summer clothes to my bedroom closet. I have a lot of clothes that are too big for me now. I'm saving some just in case I grow back into them, and sorting others to pass on to other people or sell in the resale shop. I still have some clothes that are too small from some younger years, but I"m saving those in case I need them next winter. Story of my life - three sizes of clothing.

I feel good, and I am in good spirits. I volunteered at at the Humane Society Thrift Shop yesterday, and I did my radio show this afternoon which was really fun. I have lots to look forward to - writing classes, melodrama in August, more business and better cash flow from the bookstore. We have several new gift lines to get stocked. I'm working tomorrow and hope to get that done. We are in the "lull" before the summer tourist season starts building on Memorial Day weekend. May is turning into a busy month. Next weekend we go to Santa Fe to rendezvous with three of my college classmates from University of New Mexico Geology Department.

I see the GP this week for a regular check-up. Then I'll have a CT scan and see a clinical trial oncologist next week and my regular oncoologist the week after. A dear friend of mine just found out she has a tumor and is seeing my surgeon in Denver. I'm keeping my fingers crossed that her tumor is benign. She told me, "I have a hairball." I hated to hear those words.

Just up here in Colorado, turning gray, embracing the meds, trying to halt further "hairball" growth.

Thursday, April 27, 2006

New Hope, Colorado

According to my AAA Road Atlas of the United States, there are sixteen states with a town named New Hope: AL, AR, GA, IN, KY, MN, MS, MO, NY, NC, OH, PA, SC, TN, TX, VA. Georgia, Ohio, and Texas each have two towns named New Hope (one in Ohio is spelled Newhope), and North Carolina has three. There is not one in Colorado, but I'm starting one in my front yard.

It is a beautiful, spring morning in Ouray, Colorado. Our grass is green way earlier than usual. The daffodils are blooming. There's still snow on Whitehouse Mountian in the eastern end of the Sneffels Range which I can see across the valley from the window at this computer desk, and we could have a snow flurry in town tonight. But spring has come very early for us this year which I count as a blessing. Each date that I cross off on the calendar I wonder, "Will this be my last April 27th?" My doctors and many friends have given me some new hope.

After my last visit with my oncologist and now that I'm "almost tapered" off the steroids, I feel like my health has returned to some state of normalcy. I had been really bummed because I didn't think I'd get back to normal in any way as I'd known it before. We really won't know for two scans from now in July if the clinical trial drug is working, but I feel good knowing that I'm helping to figure that out. There may be another clinical trial in the works for me, if my tumors don't respond to the Sorafenib. And chemo is always an option and I've corresponded with some people for whom it has worked well.

My rash has pretty much cleared up. The Aquaphor cream they have had me use has done wonders for my dry skin. It is good s**t! Also, I got to meet a woman named Margaret in Denver through my good buddy Jody, herself a cancer survivor. Margaret has beat the odds on pancreatic cancer and used to have my oncologist, Dr. Bergen, when he was in Denver. (We both are big fans of Dr. B.) Margaret gives me lots of hope, too. She also turned me onto Palmer's Cocoa Butter Formula with Vitamin E skin cream. We showed each other our surgery scars and I could barely see hers. She gave me some to try, and already I think my scar is lighter.

I have this thing I call "Carolineland". In it are all the things I love to do like knitting, going to the movie, hanging out with my husband, my cats, friends, and family. Tap dancing, acting in the melodrama, volunteer work, the bookstore, my radio show, bowling, writing, travelling. All my favorite stuff. New Hope is now a little village in Carolineland where I have all my cancer friends living in my heart. Or friends facing other big challenges. If you don't have your own ______land (insert your name in the blank), you need to get one.

So I am going on with life. I'll be back on the radio show this Sunday afternoon. I may volunteer at the Humane Society Thrift Shop on Saturday afternoon. I'm going to the Chamber's retail committee meeting tomorrow morning. I'm doing the melodrama this summer, and our performances will be August 2nd - 4th. I'm taking two writing workshops this summer, one of which is in Taos and includes a screenwriting class. I'd like to do a documentary about my cancer experience and am hoping to work with the Ouray High School film class. I also have ideas for other short comedy films.

I have to scoot. I'm running the bookstore today and I have a sales rep coming first thing at 10am. I havet to go "fling" myself into life, as my ex-husband Lance used to say, like some social lemming.

So I'm just up here in New Hope, Carolineland, Colorado, trying to melt those tumors or at least get them to stand still, meanwhile flinging myself into life. Stay tuned. I have a lot more to say.

Thursday, April 20, 2006

Back on the Trial

I saw Dr. Bergen, my oncologist, on Tuesday. My side-effects have subsided enough that I went back on the clinical trial that day. My dose has been reduced by half. The first day, the rash started up, my foot swelled up some, I had a low-grade fever, and a little nausea. All the symptoms passed. I slept really good that night without any sleeping medication. I am still on the steroid taper, and I'm taking benadryl religiously. So it looks like I'm back on track.

I also attended a support group for women with cancer at St. Mary's that day. I could only go for thirty minutes before my appointment, but it was wonderful. The facilitator did a great job, and I like all the group members. The chaplin from the oncology center was there as well, and she was very nice. I have also contacted Bossom Buddies in Montrose, and they said I can join their group as well.

Dr. Bergen said that we shouldn't have high expectations for my next scan, scheduled for May 9th, because I haven't been on my medication that long. Plus, my last scan was February 24th, and I didn't start the clinical trial until March 21st. I was on the trial med for two weeks and then off two weeks, and now I'm back on at a reduced dose. But given my rash and side effects, we know it's doing what it's supposed to do. So we are hopeful.

I told him I was trying to study chemo options, and he said if I do chemo, it won't be for a while. He's trying to get other clinical trials set up at St. Mary's, so maybe there's another I can try if this doesn't work out. I had asked him once about a stem cell trial, but he said that's kind of like a hail-Mary approach.

So that's it for today. I have to run as we are driving to Denver today to be in a gem & mineral show there this weekend. I may not have access to the internet until next week, so I may be on blog vacation for a few days.

Thanks to everyone for their prayers, particularly my former mother-in-law, Juanita Cook, whom I heard from recently. I feel an extra "oomph" with her in my corner.

Monday, April 17, 2006

Tomorrow Is a Big Day

Tomorrow, I see my oncologist, Dr. Bergen, at St. Mary's Regional Oncology Center in Grand Junction. It looks like I'll be able to start back on the clinical trial medication. My clinical trial contact person called me today and said that the rash indicates that my receptors are responding to the medicine. They will start me back at a lower dosage. I am excited to be part of this process. Even if it ultimately doesn't work and I help the researchers figure that out, I feel good about that. There's always chemo to fall back on later.

I think they'll have to do a blood test and make sure my enzymes are okay, which they have been. Also, we'll be scheduling my next scan for May. Scans are always a big deal to cancer patients - just what aret those tumors are up to!

I really like my oncologist, and I really like St. Mary's. And I really like my local GP, Dr. Gates, at Mountain Medical in Ridgway - he's brand new out of med school. My surgeon, Martin McCarter at CU Hosptial was awesome. I feel I have a very good team. The American Cancer Society has been very helpful - we're hoping to go by their office in Grand Junction tomorrow just because I want to see it in person. I have also met with Patty Ammon about nutrition and supplements, and she and her staff at Ridgway Integrative Medicine have been great - they have a library there and I have borrowed books. There's a lot of conflicting information out there, and I 'm trying to sort it all out.

I do NOT believe, as some books and videos assert, that traditional medical doctors and the American Cancer Society really don't want to find a cure for cancer because it would mean the end to a billion dollar industry. I think the doctors I work with and the American Cancer Society would rejoice. There are so many cancers, and it is so deadly, and it is so tragic. I am actually very lucky. I correpsond with a number of people who are younger than me, much younger, and are going through chemo to try to shrink their tumors just so they can have their livers resected like I did. Some of them have families, young children. I am praying and pulling for all of us. Through, I correspond with people all over the world. I am so grateful for this website. I do believe traditional medicine is very harsh, and I wish had taken better care of myself starting from an early age.

I do NOT believe I got cancer because I am angry, as some people have told me, and in fact really pisses me off when I hear this. But these people have told me this in all sincerity, so I respect their candor. Apparently, it's part of the folklore of Chinese medicine - anger manifest as problems in the liver. But my primary cancer is in my bile duct, and besides, primary liver cancer is fairly rare, although cancer often metastisizes there. If people got cancer in their liver because they are angry, wouldn't there be a really high rate of liver cancer? One person said it could have been that I was angry at my mother as a toddler because she wouldn't let me go outside or have some candy. Now, when a child throws a tantrum at my candy counter in the bookstore, should I say, "Oh honey don't get angry, you'll give yourself liver cancer!"

I believe I got cancer for two reasons. I think it is some how hereditary in my family, although the fact that I am the fourth generation on my father's side could also be coincidence. My father had prostate cancer, although he didn't die from it - he committed suicide which will be the subject of a future blog. His mother, my grandmother Bessie, died of colon cancer. She willed herself to live long enough to see my older sister Suzie be born, her first grandchild. Her mother, my great-grandmother Caroline, died of breast cancer. They say I look a lot like Bessie and Caroline (for whom I was named) in looks, build, and thick brown hair that doesn't turn gray. Secondly, I didn't take care of myself. I am a junk food junkie and have a tendency to overextend myself. If sugar feeds cancer, I sure fed that beast. As an accountant, I dealt with long hours and lots of overtime by consuming mass quantities of junk food. If I had to work on the weekends or late at night, if my mind couldn't be happy and my body couldn't be happy, my mouth could be. (I also listened to some good music or NPR so my ears were happy, too.) We now eat much healthier and try to exercise. I think I allowed myself to get really busy, my immune system got depressed, my cancer gene kicked in, and I fed it really well with lots of candy and highly processed food.

So I'm up here in Colorado, trying to shrink my tumors, and sort it all out.

Don't forget to eat your fiber.

Thursday, April 13, 2006

My Apologies to God

A very good friend, Jody, pointed something out to me after my blog from yesterday entitled "My Override Button". She said I kind of sounded like I didn't think God was on my side. So I think I owe him an apology.

God, I'm sorry if I sounded pissed off at you yesterday. I'm not really, but you can put me in group therapy when I get to heaven if you want. Actually, I do see my cancer as a blessing. It really has been that wake up call I needed. I'm rearranging my life to do the things I always wanted to do and spend time with people I love.

In order to have peace about all this, I have to be prepared to surrender even though I intend to fight my cancer every step of the way. In order for me to surrender, I have to think that you need me up in heaven more than I need to be on this earth. Maybe it's death I need to direct my anger at and I'm transferring it to you. I'm sorry I was so hard-headed, and you had to resort to cancer to get my attention.

The first big death I ever dealt with was that of my former father-in-law, Clarence Cook, Jr. He died instantly of a heart attack in his early 60's. It was so hard to lose such a vital man so quickly and so young in his life. He was a career oil & gas accountant, an expert, and I was just beginning my accounting degree. I was really struggling with his death until in a dream one night, Clarence came to me. My then-husband Lance, his mother Juanita, and I were walking into some fast food restaurant with two sets of glass doors. They were ahead of me and suddenly Clarence was sitting there in the foyer and told me to come sit down by him, which I did. Lance and Juanita had passed to the inside the restaurant which became frozen in time. The foyer transformed to some sort of waiting room, softly-lit in yellow, and Clarence Jr. was very calm and matter of fact. He told me everything was okay, not to worry, there was some very important work he was needed for in heaven. "I know it's difficult to understand, but just accept it. Tell the others." Then he was gone, and I was staring down at the grimy, rust colored tiles of the restaurant. I got up and joined my family. No one had noticed that I had been gone. By the way, Clarence's birthday was yesterday.

Wednesday, April 12, 2006

The Override Button

One of my most useful tools in dealing with this cancer stuff is what I call my "override" button. There are days you get bad news from the doctor or you read something about life expectancy for people who have your kind of cancer, and you could get really freaked out. I've gotten where I pretty much say to myself, "I don't give a damn what you tell me, I'm not leaving this earth until I'm ready to go."

Can the will override the biochemistry that lets these stupid cells run amuck in my body? If others are throwing their will in with yours, can it make a difference? Am I denying God's will because I want to hang out in this beautiful imperfect place as long as I can and refuse the call home? What - does Heaven need a treasurer for the Chamber of Commerce? Well, too bad, because I'm not ready to leave this world yet, AND YOU CAN'T HAVE ME!

Keep praying for me because I have some cancer butt to kick, and it won't be easy. I'm going to need all the help I can get.

Steroids - they're not just for athletes anymore.

Tuesday, April 11, 2006

Better Luck Next Week

Robert and I drove to Prescott Valley, Arizona yesterday and are visiting my sisters, Suzie and Diane. It's nice to be on a true vacation. We bought a video/still camera today and hope to post some pictures on this blog soon.

I saw my GP yesterday morning in Ridgway on the way out of town. We didn't do blood work. He said I still have enough of the rash and swollen foot that they don't want to put me back on the clinical trial medication yet. Also, the steroid I'm taking for those symptoms is on the list of drugs that interferes with the sorafenib.

My symptoms had almost cleared, but they got worse over the weekend. It was a very stressful week. We had a good friend that was killed in an auto accident. I have been in the process of stepping down as treasurer of the local humane society, and there was a very biased article written about us that came out on Friday. I hardly slept all weekend. My blood pressure was 148/100 on Monday morning which is high for me. (It usually runs 100/80.) It's bad when your lower number is what the upper one usually is. They said this is probably due to the steroid and/or stress. They gave me some sleeping pills, but last night I was able to sleep without them. I'm trying not to add anything else to the grand "chemistry experiment" which I seem to have become.

Next week, I see my oncologist, and we're hoping I can go back on the medication then. In the mean time, we are having a wonderful time unwinding in Arizona. I'm reading poetry, cooking, and doing little "spa" things for myself.

Saturday, April 08, 2006

Will Not Leak in Flight

Today I attended a wondeful little writing workshop. Because I haven't slept much lately from the steroid medication, I asked a friend who was teaching in the workshop if I could ride with her. Jill and I held a great salon on the meaning of life in her jeep driving to and from Montrose. I also got to tag along to dinner with the workshop organizers and teachers - we had a delicious meal at the Camp Robber Cafe, discussed ways to get more people to the workshop, and toasted a successful day.

Tonight, I returned home all inspired from the class, and decided to create that "special writing place" so often touted as a basic necessity. I cleared a space at one end of the dining room table which is a mountain of files and office supplies devoted to the bookkeeping of our business and now, my many medical records and bills.

I went on a scavenger hunt of several books mentioned in today's writing classes that I know are here somewhere in our Victorian home, a place that has grown to be more of a storage unit that we happen to reside in. (And yes, we do have a real storage unit as well - it's down by the river, but it's packed so tight I doubt the door will even open.) As a bookseller, as a packrat, and as she who flings herself into life, I have drug the printed page home , one box, one book bag at a time over the last ten years since marrying Mr. Stoufer. Tonight, I got to realize the efforts of undoing myself from so many volunteer commitments - I actually had time to sort through my own devine mess.

I searched for Bird by Bird by Anne Lamott and Pam Houston's Waltzing the Cat, pawing through those book bags, those boxes, checking the many piles of books that surround the bed. In the sitting room, I attacked the stacks in front of the bookcases - sorted through so many books obtained at author signings - both from bookseller conferences in Denver (American legend, Joyce Carol Oates) to our own modest offerings at our small town bookstore (local mystsery writer, Ray DeRouin, who owns the toy store down the street). Their novels will get equal weight in my stack of inspiration. I managed to reach the inner recesses of our bookshelves, covered in measurable amounts of dust. I fondled texts from sophomore literature classes I took when I was obtaining my degree in geology, remembering with pride the big red "A" I got on my paper about Walker Percy's The Moviegoer. I clutched to my chest Coming Into the Country by John McPhee which was the first hardback book I ever bought as an adult, a 23-year-old divorcee in Abilene, Texas who had been a flight attendant for Reeve Aleutian Airways two years earlier.

And so, I have constructed my ceremonious pile of literature and books on writing - there with the brand new eight-pack of rainbow-colored gel pens, guaranteed "not to leak in flight". We'll see what happens.

Wednesday, April 05, 2006

Eating, but not sleeping

With cancer it's always something. It's like playing that "Whack-a-Mole" game at Chuck E. Cheese's.

Before I got on the clinical trial for Sorafenib, I was tired all the time and ate like a bird. Then I started getting more energy with the drug. Then came the side effects and the steroids to alleviate those, and now I'm an insomniac standing at the refrigerator all the time, like some grizzly bear who woke up from hibernation. I think I ate more for lunch today than I did in the entire month of December. I've gained four pounds in five days. My inner incision from the surgery kind of hurts because my tummy is so full.

Yesterday, I did get blood drawn and it looks pretty good which is encouraging although something was sort of elevated, but it's always elevated according to the GP. I have to get blood drawn and see the GP again first thing Monday morning to see if we can start back on the trial medication. Hopefully, my rash and sore foot will be better by then. They are already improving. I am headed to see my sisters in Arizona on Monday, but not without that first stop at the clinic on Monday. Mostly, I'm just grateful that I'm over that first stage of itching in all those weird places. Ever see your dog or cat drag their butt on the carpet? You get the picture.

Just up here in Colorado "embracing my medications"-

Monday, April 03, 2006

Medication Suspended

After consulting with my case manager and oncologist today, we deteremined that I fell on the toxicicty chart such that I need to suspend taking my clinical trial medication until some of my side effects clear up. I have "hand-foot syndrome" where my feet and hands are swelling and sore, and to be honest, I can barely walk. The rash seems mostly stable, growing a little more, then lessening, growing, lessening. One of my ears is stopped up or else I'm experiencing a hearing loss.

I was one dose short of going two weeks with Sorafenib. I will see my GP tomorrow and should have a blood draw to see how my liver enzymes are doing. Last week they were okay. I'm still taking the steroids, benadryl, and B-6 to combat the rash, and the steroid I took at 8pm is going to keep me from going to sleep for a while, which has been the case the last few nights. I haven't gotten a lot sleep recently. What a drag - so much energy and can barely get around on my feet.

As soon as the side effects subside, I can start the Sorafenib again at a lower dosage and work back up. I will be smarter this time and drink lots more water, stay off my feet, and just take life slower. I do feel a bit discouraged, but I realize I have to be patient. As I mentioned in my last post, at least my cracked ribs and residual bronchitis seemed to have cleared up.

It was a beautiful spring day here in Ouray. Sat on the front porch in late afternoon watching our cats explore, for the first time in 2006, the bare grass. It's really early for so much of our front yard to be melted out from the snow.

Sore Foot, Big Appetitle

I now seem to have the second most likely side effect of Sorafenib - swollen, red, sore feet and hands. Mainly, it's my right food. Being on my feet for ten hours last Friday probably did the trick. But I had tons of energy and lots to get done and I didn't feel any problems until the end of the day. I have tried to stay off my foot the last two days. Gotta work the store again today, as one employee is on spring break with his kids. I will just perch on the stool behind the counter.

On the upside, I have lots of energy (and can't walk much - I'm catching up on my reading as a result.) Before the Sorafenib, I was tired all the time. I felt like I was going down a black hole. I had pain in my abdomen - I told me husband that I felt like I'd been sawed in half in a magic show, and put back together kind of crooked. That pain is gone. I do feel something on my right side in what I think is my liver - hope it's not another tumor. I have had pain in my left rib cage all winter and that disappeared last week. I have had some residual bronchitis since last October which also seems to have cleared as well. I don't know if all these improvements are from the Sorafenib or from being on steroids for the rash, which is still there and seems to have stablilized, or both.

And my appetite is back to what it was before I had my liver resectioned. I am amazed at what I'm eating. I want dessert with every meal. I think I've gained two pounds over the weekend. Before, I had such a small appetite and had to force myself to eat more that I wanted.

I will call doctors today to see what to do about the foot. I see the GP tomorrow anyway.

Thanks for listening.

Saturday, April 01, 2006

Rash Update

The rash is still there and spreading slightly, but it does seem to respond to the steroids and benadryl - the redness goes away in my face and the rash gets better on my arms and legs. I have much more energy and a more normal appetite. The steroid will probably also contribute to that as well. I can see why athletes like these so much. Most of the scalp and other itching has gone away. One of my feet was really sore from being on "my dogs" for so much of yesterday. Better wear my "crocs" today.

(By the way, if you don't know, crocs are the most wonderful shoes - take this from a woman with bunions. And great retail therapy. After getting bad news from the oncologist on two occasions, I went immediately to the mall and bought crocs which really helped deal with devastating information. I have an orange and pink pair, and hope to get blue, green, and red on my next trips. We reserve crocs for the bad news days, so if I have any luck, orange and pink are all I'll ever have.)

I asked my doctor to take blood on Thursday which is rare for me because I hate needles and having blood drawn. Everything looked normal with the liver enzymes. He did want to check a a tumor marker which was elevated in February, but we didn't have that result yesterday.

So for now, I get to continue with the sorafenib. I am studying blogs of other cholangiocarcinoma patients to see what chemo is working for them, because if the sorafenib doesn't work out, that will be the next option most likely.

I have another scheduled monitoring check-up next Tuesday for the clinical trial. This will be with my local GP. My next CT scan is mid-May.

I worked a good 12 hours yesterday, as I had so much energy. I did two hours of bookkeeping for the bookstore at home, and then our employee called in sick so I did ten hours in the bookstore and got a lot done. (This is the first time this employee has called in sick in 5 years.) I hope he can make it in today becaue I woke up about 3am and when I couldn't go back to sleep, I got on the internet to catch up with everyone. I know I'm gonna need a nap later on.

Tomorrow, I'll do my oldies radio show on KURA-LP. 98.9 from 1pm - 4pm MDT. (Don't forget to set your clocks forward.) I cover the 40's - 50's in the first hour, the 60's in the second hour, and the 70's in the third hour. I may even do an extra hour as the girl with the 80's hour right after my show may be gone tomorrow. Sometimes I play songs about how I feel about having cancer, like the Beatles "I Feel Fine" or "Getting Better". Or Tony Bennett's, I Left My Heart in San Francisco, to which I like to sing, "I left half my liver in Denver, Colorado." Or Sly & the Family Stone's "I Want to Take You Higher" only I sing "Don't Ya Wanna Live Longer" instead of "Don't You Want to Get Higher". And so on. Tomorrow, I think I'll do Jefferson Airplane's "Go Ask Alice" and sing "one pill gives you diarrhea, and the next one constipation."

Okay, enough of that.

More later, Caroline