Tuesday, March 06, 2007

The Joy of Steroids

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

2 comments:

Arlene said...

I love your comments - raw and uncensored! Don't ever change.

Lynne said...

Caroline -
As another cholangio person, I appreciate your honesty, even while recognizing that constipation is not culturally something we talk about much. But you are so right, the drugs do tend to either stop things up or move them along too fast. I was really constipated after my last oxaliplatin infusion, and had to strategize about how to cope. I wasn't as constipated as you describe, but I could still relate.

I saw the Body Worlds 2 exhibit in Boston last fall, and, like you, I was fascinated by the organs, and looked for cancer everywhere they showed it.

I think it was gutsy of you to write those notes with the ornaments. I have a lot of history with my Christmas ornaments too, but it felt too vulnerable to write notes with them, so I didn't. I'm not sure I'll be around next Christmas, either. It seems so far away! And, like you, I love life, and don't feel at all ready to leave.

(And thanks for your post on my blog. I'm so glad it speaks to you!)

Lynne