Member Rara Avis
I know that I should answer each of you individually, but I am still tired from yesterday. I had a CT scan as part of the preparation for radiation, and I am allergic to the dye they usually inject...so, I have to take steroids to counterract the allergy.
The steroids have kept me awake and all chattery for the past 2 nights, even though I was tired, I still couldn't get to sleep.
Today, I am coming down off the their effect, and so even though I slept a little better than the night before, I am still not back to normal yet. I have also been freezing cold all day...I was burning hot all day yesterday...and my appetite seems to be running a marathon while I couldn't eat at all yesterday. So...instead of being a proper person and thanking each of you with an individual reply, I am being a lazy one and thanking you all with one reply.
PDV, Lauren, Nan(Pilgrimage), Martie, Floria, Sharon(Mysteria), Karilea, Elizabeth, Charisma, Gentle Spirit, Nan, Nancy, Tracy, Suthern, Chris(Nightshade), faterider, doreen, amigo, Juanita and Smartchick.
Thank you all for all of your prayers and cards and blessings.
You have no idea how much they are appreciated by David as well as by me.
I haven't ever mentioned anything about my cancer on this website before because I really didn't know how to say it...and I really hate to be pitied...but I am fighting for my life and I am fighting very hard.
I was diagnosed last October with a very rare and aggressive form of bladder cancer, which...as of my last CT scan in January, has not spread beyond my bladder. I had completed 3 cycles of a very difficult chemotherapy right before having that scan...and the tumor, not only didn't regress....it grew. About 2 weeks ago, I had it removed for a biopsy which showed that the cancer was the same cancer as the original. This was expected. When we received the pathology report in the mail last Saturday, it gave us the aggregate size of everything which was removed. When we compared it to the size of the first tumor...removed in October, it was 5 times the size. Thats when the panic started. That was also on top of my surgeon telling me that my cancer was refractory to almost every treatment. I had a horrible weekend because, there was no one around who we could talk to, who understood what that meant. My doctor was out of town at a meeting, but I left many frantic messages all weekend and on Monday, he called me back to tell me that the aggregate size has no meaning because it simply means that they removed more tissue, not necessarily more cancer. What had regrown was 2 little tumors, so the surgeon had removed all of the tissue between them also...thats why it was so big. He told me never to open a pathology report on the weekend again. He also disagreed with the surgeon about the cancer being refractory to treatment. He thinks we can wipe it out and the fact that I have not YET had any metasteses show up is a VERY good sign...of course, I have not had any treatment now in about 9 weeks, so I am scared that they have had time to grow, and wouldn't be totally shocked it some showed up on my next scan.
So I would again...like to say thank you...and I love you all.
Now that you know about the cancer, I feel freer to discuss it and also to post some of the poems I've written about it.
I will start my radiation treatments this Tuesday and will have to be in Ann Arbor (about an hour and a half from here), every weekday for 6-7 weeks. During that time, I will also have a mild chemo treatment once a week. My doc says I will probably be totally exhausted but will probably not lose my hair, although it may thin a bit. I don't know whether or not to believe him or not about the hair because last time he said that it would all come out at once on the 17th day after starting treatment and it NEVER all came out...in fact enough of it hung around so that I could go outside wearing a hat and no one would ever guess that I lost any. Most of it fell out of the area above and behind my ears and in the back of my head. Now it has all grown back, and as I wear my hair short, anyway...it is blending in with the rest of my hair. Everyone also said that it would come back curly(its normally poker straight), but it came back straight just like it always was. The only difference is the color. It is now very salt and pepper, which...surprisingly, I actually like. I got it cut very short and everyone has been complimenting me on my new hairstyle and my new color. I have 5 wigs, which I bought when I was first diagnosed...and have never had to wear them...so please include my hair in your prayers also. I hope that it isn't just back for a short visit...or making a cameo appearence because I really like having it on my head and not clogging up the shower drain.
Thank you and I love you all
copyright2002 Lyra Nesius
"poetry is life distilled" Gwendolyn Brooks