You could say that this battle with leukemia has been an emotional rollercoaster. The first diagnosis threw my whole life into question. Then I got a concrete treatment plan from doctors in Boston and went through that treatment without major issues. Suddenly, there was plenty of hope (and in my mind at that time, almost too much confidence) for a cure. Then came the relapse.
But I’ve also been through a ‘physical’ rollercoaster. And I’m not taking about how I physically felt in and out of treatments, although there were plenty of ups and downs associated with that as well. Here, I’m specificially talking about my ‘complete blood counts’, or simply ‘counts’, as doctors and I call it when we communicate with each other. A cool medical jargon I picked up, I guess.
My blood is tested frequently – once or twice a week when I’m not in the hospital, and everyday when I am. ‘Counts’ are always included in the tests, and what it shows is simply the concentration of different cells in my blood: red cells, platelets, hemoglobin. The test also shows the count of white cells – the most crucial component, since my cancer affects those cells specifically. That’s the number I always ask about first when the doctors come by my hospital room, or when I look up the results in my online medical account.
Too low a number means my immune system is suppressed and I need to take precautions regarding my personal hygiene. This usually happens right after a round of chemo, so the precautions are taken for me when I’m quarantined in the hospital room. Too high means my cancer is active and bad cells are growing fast. Fun fact: the word ‘leukemia’ is made up of Greek words for ‘white’ and ‘blood’. I suppose that means the blood should have a lighter color when the counts are high, but I haven’t noticed anything like that so far. Another fun fact: when the number of my white cells is high, usually the majority of those cells (for example, 60%) are cancer cells, what the doctors call ‘blasts’. Another jargon I’ve learned.
The ‘physical’ rollercoaster that I mentioned is the ups and downs that my counts go through. It happens roughly like this.
The initial ascent. You know how, when you start a rollercoaster ride, you usually ascend slowly, in suspense, accompanied by the clanking sound of the rails. Well, with counts, it doesn’t happen like that. There’s suspense and anxiety, for sure, but it doesn’t happen slowly. In healthy people, the range of white cell counts is about 4-9 thousand per microliter. Most recently, my counts skyrocketed from 500 to 100 thousand in the matters of two weeks. Letting the numbers climb much higher than that would present serious risks to my health.
The first fall. Then, if you are on a rollercoaster, once you have slowly reached the top, you can expect a steep fall, possibly the steepest in all of the ride. And this is probably where people get the most thrill and scream the loudest. When my counts reach concerning levels, like 100 thousand recently, I’m immediately put in the hospital and given a strong dose of chemo, with the hope that it kills the abundant cancer cells in my body. Counts start dropping fast, just like with the rollercoaster fall. And you also get some sort of a thrill during these times, although it’s negative thrill, and thrill is probably not the right word. The ‘thrill’ is the nausea and fatigue and other types of discomfort associated with chemo.
Things at lower heights. After the first fall, the rollercoaster ride usually offers a few more tricks. It might go in a spiral or a circle or make a loop, what have you. But, except for a few that I’ve been on, there are no more steep falls after the first one. This is similar to what happens to the counts: once they reach the bottom – and they can go as low as 10 (no thousand, just 10) – they stay at the bottom for while, occasionally fluctuating a bit. And the spirals and loops on a rollercoaster can be metaphors for sporadic issues that pop up during these times: occasional nausea, body pain in different areas, but most commonly fevers. Besides those issues though, I usually just have to wait for the counts to come up.
End of the ride. The ending of a ride is always flat and slow. Some people may feel relief that it’s all over, while others may feel longing and want to go on it again. But there’s never suspense. With leukemia and the counts, the ending is the most suspenseful part. See, even though the chemo might have killed most cancer cells in my body, it doesn’t mean that the treatment has worked. When the white cell counts start coming up, you might also see blasts in the mix, which means the treatment has actually failed. Without any further intervention, those cancer cells would again multiply uncontrollably and bring my counts to abnormal levels.
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There are rollercoaster rides I had enjoyed so much that I went back to it on the same day. I think it was Bizarro at Six Flags. But I definitely, absolutely did not enjoy the ‘ride’ of the first round of chemo after my relapse. Unfortunately, it failed to work, so I had to go back on another ‘ride’. And although the medications that the doctors give you are different each time, the rides are pretty much the same. I might tolerate some better than others, but in general, they all suck. And when you’re forced to go on a sucky rollercoaster ride, then forced to go on another sucky rollercoaster ride, that’s no fun.
Just another chapter 