We Sure Hope This Cures Your Cancer (But It Also Might Give You Leukemia)
Yesterday was my third PET scan since February. The reason I have to be scanned so often is because my cancer is rare, aggressive, and they have no f***ing idea what to do about it.
For those who don’t know, getting a PET scan is anxiety-inducing, to say the least. Essentially you get injected with radioactive material so they can figure out if your cancer has “recurred” (a terrible word for it since it really means it never went away) or if there’s metastasis to other parts of your body. In a nutshell, every three months I stand before a jury and ask “Do I get to live some more?” and the results come back 2 to 5 days later. Lol. Fun times.
I went into this PET scan pretty confident. I’ve been doing everything under the sun to keep myself alive. I cut alcohol and sugar, I fast 2x per week, I eat a ton of green vegetables, I take supplements, I contact oncologists around the world, I exercise, and I’m trying multiple preventative treatments. If anyone’s gonna beat this thing I’m hoping it’s me! I even have a mantra … “Cancer cannot survive in my body.”
But, on the long drive back from UCLA, it was news of my blood, not my PET that sent me spiraling. My white blood counts were lower than they’ve ever been. Most laypeople don’t pay much attention to their blood counts, but cancer patients are obsessed with them. At least I am. Since undergoing chemotherapy and radiation my blood has NOT recovered. I am extremely immunocompromised and pretty anemic (fun stuff!). But that’s okay because it’s a common side effect. The treatment wiped out my bone marrow — and now it needs time to recover. How much time is the ultimate question. My doctors say it can take up to a year and it may never fully recover to “pre-cancer” levels. But as long as it’s inching UP we’re okay. We’re on the right track.
Unfortunately, my white blood cell counts went down. That is not good.
When I saw the low numbers next to giant red arrows (pointing down), I started crying and freaking out, of course. “The cancer is in my bones. I’m stage IV now, I know it”. My husband tried to reassure me. But it’s tough. It’s tough to be waiting on test results that are life and death and then repeat the process every three months. The daily mental gymnastics is exhausting. As the drive stretched on the sobbing turned to silent tears and then to just tear-stained cheeks. But the stress and fear remained in the air. That’s the life of a cancer patient — random emails and phone calls send you to the darkest places at least several times per week.
White blood cell counts can go down for a number of reasons in healthy patients. But when you have cancer you KNOW that your white blood cells go down from chemotherapy and radiation and you know they recover slowly over time. But I am five months out of treatment and mine have barely recovered at all. Now, suddenly, they’re actually getting worse. This can mean the cancer has spread to your bones (hence my freakout). Or it can mean that you are getting a chemo-induced secondary cancer like AML, Acute Myeloid Leukemia.
Yes, as it turns out, a side effect of chemotherapy is MORE CANCER. They don’t advertise this much when you’re fighting for your life, but treatment can have such a horrible effect on your body, it causes a secondary cancer of the blood. (I should note it’s rare, but the cancer I *actually* have is even rarer, so I take nothing from “odds” anymore.)
All of this is to say that, for cancer patients, the months and years following treatment are tumultuous, riddled with side effects, PTSD and depression. But it’s often in these months post-treatment that we’re receiving “congratulations” and “you did it” messages. Which makes coping with it all so difficult.
I want to scream for joy and celebrate with my friends and family but the logical side of my brain says “not just yet.”
In fact, at 6:30 pm last night my radiation oncologist called to say my PET scan was clear. As you can guss, I started crying as the fear of bone metastasis melted away.
But while I let out tears of joy and did a happy dance with my husband at the fantastic news (a clear scan = no visible cancer) the back of my mind was still worried about the blood counts. Why are they going down? Do I have leukemia now? Is there more cancer they just can’t see?” It’s terrifying. And I’m not sure when it ends or if it ever does.
Is cancer actually a life-long disease we simply don’t speak of in that way because many cancer patients are not even lucky enough to make it that far? Are we supposed to be so thankful we’re alive every day that we ignore the fear and post-traumatic stress?
Sometimes it feels like people see cancer as a short-term event in which a patient lives or dies. But in reality, cancer is long. It’s agonizing. And the journey may not actually have a destination. I’m becoming more and more convinced that cancer is something you live with and manage both daily and forever. And that scares the s**t out of me.
