The first layer of my onion was the diagnosis and the tests and the surgery. They all came together in one big thick layer. I was still reeling from having the whole thing dropped on me and I stumbled through it blindly, feeling my way, putting one foot in front of the other cautiously, trying not to fall off the edge of the earth.
Chemo was one of the next layers. And chemo itself is an onion... lots of layers of it's own. Side effects - the ones you expected and the ones you had no clue about. I expected my hair to fall out - something that really hasn't happened to any great extent yet. Every morning I get into the shower and give it the Dirty Harry treatment - I rough it up and ask it "Do you feel lucky, hair? Well, do you? Are you gonna hang on to the scalp for one more day?" So far, it's proved to be as tough as the rest of me. We're all hanging in there.
The side effect I didn't expect was the peripheral neuropathy. Nerve damage. One of my chemo drugs is causing it. The side effects?
- pain
- burning
- tingling (or a "pins and needles" feeling)
- muscle shrinkage
- weakness
- balance problems
- trouble with tripping and stumbling while walking
- loss of feeling (numbness)
- decreased or no reflexes
- increased sensitivity to temperature (usually cold) or pressure, so that things hurt more than usual
- constipation
- trouble passing urine
- blood pressure changes
- trouble swallowing
Nice, huh? And I'm having... oh, let's see... all but the last three and the decreased reflexes. In other words, I'm limping, stumbling, tripping, stiff, in pain and constipated (when I don't have diarrhea). Medication helps a little, as do the electric zippy carts in the store. (Plus, they're just so darned much fun to drive!) Today I got back into the gym which helped a little too.
Okay.. so the next layer. This is the one I peeled off recently. Length of remission. Somewhere along the line, David and I both "heard" that a standard remission period for my disease would be 3-5 years. (Non-hodgkins follicular lymphoma is incurable.) Last week, my oncologist told me that he would consider a "good, long remission" for me to be a year to a year and a half. Wow. It took me several days to process that information. I couldn't even ask anything else after hearing that because it filled my whole consciousness, pushing out every other rational thought I might have had. The rest of the day kind of passed in a haze, and I spent a fair amount of time reflecting on my own mortality.
Let me say here that I am a Christian. I have been born again in Christ and am assured of my place in Heaven with my Lord and Savior. I know without a doubt that this life is not all there is. That said, I am not ready to die. I am not nearly through with this life, and I intend to fight like a tiger to grab as much time as I possibly can. So, I tossed that layer aside and went out for coffee with my girlfriends. Girlfriends and caffeine are gifts from God. Never doubt that.
The next layer? We're waiting until after the holidays to peel that one off. It's going to be a consult with the doctor in Greenville who will one day do my stem cell transplant. But that's another layer for another day.
3 comments:
I couldn't really taste anything when I took chemo. And when I would put most foods in my mouth there would be this weird tingly feeling in my jaw and like the very back of my mouth. Ugh I hated that. And I started tripping all the time, we noticed it a lot the year after. I was tripping all the time until about my sophomore/junior year of high school. So.. 4/5 years after chemo. And I was always cold, and my fingers and toes would turn purple in the winter or in cold rooms. They just stopped doing that in the last couple of years. They still go numb sometimes though. Ok this is a super long comment so I think I'm going to stop. Merry Christmas! =D
I've been clumsy all my life. My mom used to call me Princess Lightfoot. Shattering my leg ten years ago and having a metal plate screwed on didn't help, and now I'm pretty much staggering around like a drunken sailor. The two of us would probably look pretty entertaining reeling down the street together!
As of today, I am also having decreased reflexes.
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