On the brink of Infusion number 6. # I’m not looking forward to this.
Yes, I know, I didn’t write last week. There were two reasons for that. A) Life is still going on, and I’m planning my daughter’s Bat Mitzvah, and I see no reason not to hold the press for a mitzvah in the middle of my chemo, and B) who wants to type when their fingers are on fire?
Personally, I’d give myself a pass for B) alone. Oh yeah, I already did.
And yeah, you read that right. My fingers were on fire, or at least it FELT like they were. Give me a second here, I’m working really hard on making some of this sound funny.
Allow me to better detail the sensation first. The entire length of my thumbs and index fingers were inflamed, slightly swollen, red in appearance, and burning from the inside. Of lesser impact, it was only the tips of the rest of my fingers that burned, and all of this fluctuated between mere discomfort and “ow, I hate this.” I could not actually hold my tea cups for three days, as the warm cups felt like molten iron (thank god for those little finger rings on cups and mugs, and for the fact that I could use the heels of my hands for a bit of balance), and, even when dropping the water temperature to lukewarm when doing dishes, it felt like I was scalding my hands in boiling water.
I survived by dropping approximately 3 ibuprofen a day. It helped a great deal, although my dishwashing duties suffered (or should I say, my husband suffered as I left more for him to do).
The burning pain gradually receded to tingling and numbness, which I’d been informed was likely. Let me clarify this for you. I’d been well prepared for tingling and numbness in my hands and feet to occur as a side effect of either my chemo-therapy or the Nulasta shots that follow, but, as you may imagine, by the time I got to just the tingling I was so grateful, that I wouldn’t have thought to consider either it or numbness a negative side effect. I’m thinking more along the lines of a blessing.
Everybody responds a little differently. On this one I’m supposing that I’m an outlier. Yay! Don’t we all love to imagine that we are unique. Here is my proof. Yay! I’m so unique that my side effects are not on the “Chemo Watch List” radar. Until now. You read it here first.
Are ‘after side effects’ still considered to be side effects? Most likely. So, after the burning, and once the tingling actually became numbness, what happened?
Tomorrow is my next infusion and as of today my finger tips and thumbs are numb. No big deal, but this next part is of more concern to me. My index fingers and my thumbs are visibly peeling. I am shedding bits of hard, dry skin, and the tips of all my other fingers are whitening to peel, and the palms of my hands are off color (I’d say orange-ish to white edged). Say what?! This my friends is a first for me. I am still acquiring notable side effects the day before my next encounter of the chemical variety.
Oh poop. Well, there are only 3 more to go, right?
Before I even ask, “How much worse can it get?” I will refer to my dear friend Amy who is going through an even rockier treatment than me even as I type, who told me two months ago that when she first experienced “tingling and numbness” after one of her infusions (and thought, ‘I’d hate for this to go on always’) she found that she didn’t experience it the next time. So that could be part of my story too. Right? We just don’t know.
Amy’s story and optimism are more valuable to me than anything I can conjure from my own experience. She was diagnosed before me with a different form of this beast, and without her, I would feel a whole world of different from the Chem-Girl who writes this. For one thing, I would be more scared, and for another, I’d be more angry. We compare notes regularly; Amy’s voice and attitude keep me calm.
Together we smile at each other over the phone and say, “Oh well.” and, “We just don’t know yet.”
Together, we just want to get back to “normal.” To where we can accept any invitation without looking at the calendar to check which side of an infusion the event falls on, and to where we can walk everyday, and at the same pace as we did before. Everything is a little more spaced out, and everything is a little slower for us now. This is temporary. This is just for now.
Just for now I have no hair. Just for now I can’t travel too far. Just for now my plans are limited. Just for now I need to be more careful with myself. Just for now my fingers are peeling.
So just for now, I’m happy to follow instructions and go on. Going on, after all, is the point. And I have a Bat Mitzvah to plan.