The doctors are prescribing the gold standard, the protocol that works best to fight your cancer. That means it's pretty darn strong stuff. You want the most effective treatment you can tolerate, yes? So you start with the toughest treatment , which may be very unpleasant, and may be more than you can tolerate. Then you work with your doctor to make adjustments to get to what you can tolerate.
(1) Fluids are so important. Even though I was drinking 8 glasses of something (water, gatorade, juice, etc.) every day, it wasn't enough and my dehydration contributed to my pitiful mental state by Day 3. Next round, I'm getting intravenous fluids every day and on the two days following.
(2) Sleep deprivation. Another contributor to my pitiful mental state. Next round I'll make sure I have something from the doctor to help with sleep. Apparently the steroids threw me back into the land of night sweats, because I was up every two hours, soaking wet, had to change clothes, change bedding (once I ran out of other places to sleep in the house).
(3) Pain. My lungs were still quite sore from pneumonia when I started the chemo, and chemo seemed to make it worse. The initial drug prescribed, even though I used it exactly as prescribed, made me a bit out of my head - quite goofy and forgetful and depressed. Had I checked with my doctor, I could have used the heavy-duty one during the night only and a gentler, kinder option for daytime to minimize this problem. As it was, drug further contributed to my poor mental state.
(3) Laxatives. Wished I'd taken them from Day 1. A week of toxic back-up is not a good thing for mind or body - nuff said. :)
(4) That after-chemo shot to raise your white cell count. For me, that was far too painful, both the injection and the aftereffects.
(5) Perspective. I felt so awful after 3 days of chemo that I just felt that I could not go on if this is what life was to be. I forgot: This too shall pass. The misery eases, in just a matter of days, actually. And remember what I said at the beginning about starting with the toughest protocol? Well, now it's time to go back to the onc for adjustments to get to the toughest protocol I can manage. For me, it's a switch in the chemo cocktail, the addition of intravenous fluids already mentioned, more careful pain management, elimination of that after-chemo shot, help for sleep, and of course, the dang laxative.
So easy to see in retrospect, impossible to see at the time. I had a lot of the information, I just couldn't process it. So another change I've implemented is better and more frequent communication with the onc during and after chemo. I did call during Round 1, but messages were funneled through office staff and lost something in translation. My onc was happy to work with me to set up a more direct system to resolve problems as they occurred this time. So now I have no hesitation about the next round of chemo, to start December 7 after the spot radiation for the lesion on my brain this week. I'm not saying I expect it to be a walk in the park, but this time I'll remember that it's a temporary state to feel so bad and that I can and should ask for help.
Hope this helps someone - it helped me to get it out of my head by writing it down, so I can look back and remind myself, "It will be all right, give it just a little time. Things will change."
Today had the "thin-slice" MRI to get ready for the NovalisTX radiation procedure, and got fitted for the mask. Plus got the news that my white cell count is back up, so I can live and eat like a normal person again. Appetite is coming back, as is my energy level. Also, my hair is starting the falling-out process - don't tug too hard!
Edited November 23, 2010 at 9:57 pm