One of the difficult things about dealing with the chemo after nearly a year of it, is the dichotomy of feeling good while being told I’m not well enough to handle the next treatment.
To be clear, “feeling good,” is the new normal. I don’t expect it to be forever, so it’s chemo-normal. I’m slower than real-life normal, I tire more easily, and I have to be more cautious about potentially getting sick or hurt. But, still, I feel okay. I go to work. I go to the store. I function like a relatively normal person most days.
While this is happening, parts of my body that I can’t feel are rather run down. Particularly bone marrow. I lived a good 45 years without really thinking about bone marrow, but it’s a pretty common thought these days. For those who like a refresher, the bone marrow is responsible for making red blood cells, while blood cells, and platelets. Chemo, the kind of chemo I’m getting at least, kicks bone marrow’s butt. Right after a treatment, it’s the red cells. I feel those when they are low — low energy, small physical exertion makes me out of breath, etc. They recover. Recovery is a little slower than it was 10 months ago, but I recover.  Then it’s the white cells and the platelets.  I don’t feel those. White cells help fight infection. Platelets help blood to clot.
The lowest my platelets have gotten is a 9. Normal people test well over 100. I need to be at least over 80 — preferably 90, but the doctor will settle for 80s if other things look okay. To put it in perspective, a test of 10 gets me a platelet transfusion. Per the doctor, research shows that a score of 5 puts the body at risk for spontaneous bleeding. Just bleeding…internal. Scary stuff.  So if my platelets are okay at a start of a treatment and I end up at a 9, there’s no way starting at a low point is good for me.
Here’s the problem: I might be feeling fine, but my platelets and white cells have bottomed out. My even-numbered treatments (5 days in the hospital) are the culprits for platelet desolation. I’m currently 5 weeks after one of those treatments and hoping… hoping… I’ll be able to get treatment tomorrow. Normally, treatments are supposed to be every 3 weeks. I’ve gone in and been sent home 3 times in the past two weeks because my platelets weren’t high enough to handle another treatment. I’m in with the doctor all, “I’m fine! Just do it! Let’s get it done!” Meanwhile, he’s gently pointing out that while I might feel okay, my body can’t handle it. My bone marrow has been beaten and the chemo has danced around the bone marrow’s bruised and beaten remains and given it a kick for good measure.
Just to hammer home the point, my bone marrow appears to be incapable of multitasking anymore. When I see a jump in platelets from one appointment to the next, I tend to also see a drop in white blood cells. All the cells take turns reproducing. They don’t like to play together, it seems.
Where does this leave me?  Practicing patience. I want to get on with the next treatment. It’s sort of a pair with the previous treatments (remember the every-other-treatment thing?), so it would be nice to get it done. While that happens, all of us — the doctor included — are weighing the benefits and potential risks of the final pair of treatments. We’ll see what happens. We’ll weigh all the factors as best we can. Given there’s no actual data — thank you, rare pediatric cancer with no research done on adults — we have to trust experience, instinct, and best guesses.
Here’s what to remember from this:  I feel good.  I’ve been told from the beginning that cumulative effects would wear me down and I probably wouldn’t be doing too well at this point. Turns out, the start of chemo was harder on me than the middle and end. At least the parts I *feel*. I was hoarding sick time and working every hour I could even when I could barely hold myself up in a chair just to prepare for this last phase when I worried I wouldn’t be able to work at all. And, heck, I’ve been at the office more the last two months than I have in quite some time. So, as far as I’m concerned, I’m beating chemo. It may be kicking my bone marrow’s behind, but there’s a lot more to me that has escaped it’s evil, toxic tentacles.