Thursday, August 02, 2007

Couldn't Do Chemo Yesterday

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.

3 comments:

yarnmaven said...

I'm thinking about you, Caroline. Keep on hanging in there. We love you.

dee said...

Hello Caroline,

Just wanted to see if you knew about Low dose naltrexone. Works for your cancer if you go into the Yahoo group below and click on Links.. and read about it.

Metastatic cancer treated with chemotherapy are only palliative and don't work. I was offered it and refused knowing it wouldn't save my life. I have been on Low dose Naltrexone for 6 months now and have stopped growth. It is non toxic, inexpensive US$38/month and no side effects.

Just want to let you know the following sites are available and Low Dose Naltrexone has saved our lives.

I was told of my metastases in February with no chance to survive as no treatment would benefit. My good friend told me about Low dose Naltrexone and have been on it since. I am doing great and feel fine and shouldn't be typing this to you now as I had only 4- 9 months. You have to do your reading and we are here to help. The links in this group are there for your help and all the information. Your oncologist won't know about it so all of us get our prescription from our GP's.

LDN can stop /or regress cancer but not a cure. But stops it right where it is without any further progression.. I take it for cervical cancer now metastatic to my lungs and have slowed and stopped progression. It has had great results with metastatic colon cancer so you are fine also.

The websites below explains what it is and what it does...

http://www.lowdosenaltrexone.org/

http://www.lowdosenaltrexone.org/ldn_and_cancer.htm


http://www.susiemaui.com/low_dose_naltrexone.htm

http://health.groups.yahoo.com/group/LDN_4_cancer/

Be well,

Dee

Caroline Stoufer said...

Dee -

Do I know you? Do you work for Naltrexone?

I appreciate your comments, but I know lots of people with metastatic cancer who have gone into remission with chemo. I do not believe chemno is just pallative, and I think it's careless of you to say so. I was diagnosed two years ago - had half my liver removed. In my case, it might end up being pallative, but so far, I'm still here, still kicking and would kick your ass if you were standing next to me.

And by the way, I did alternative medicine briefly, and my tumors grew the fastest during that time.

So put that in your pipe and smoke it!