It’s weird, having cancer. I guess I’m lucky to be able to say it’s weird rather than terrifying. It is terrifying sometimes, but it’s not going to kill me, at least not directly.
Cancer was discovered in me by accident, which is often the way with chronic myeloid leukemia. At a regular checkup my doctor asked if I was okay with doing some basic blood tests, since it had been several years. A few hours later he left a message on my voice mail: Call me. Today. I’m not leaving the office until I hear from you.
My white blood count was astronomically high, leading the doctor to believe I had leukemia. He had made an appointment for me first thing the next morning at the cancer center for tests to confirm it. More blood tests, bone marrow biopsy from the rear of the left hipbone, many unintelligible explanations throughout the day from the oncologist about bone marrow, FISH and PCR, cell differentiation, blah blah blah.
In plain English: There was good news and bad news.
Bad news: I have cancer
Good news: This cancer is not fatal anymore; I will live a normal length life
Bad news: There is no cure for it
Good news: A single daily pill will keep it at bay
Bad news: The pill costs $120,000 a year and has some side effects
Good news: My insurance will pay for most of it
Bad news: I will need quarterly blood tests for the rest of my life
Good news: If you have to have cancer, this is the very best one.
So, just as life gets divided into before and after marriage, and before and after kids, now it has become before and after leukemia, this fairly rare cancer of the blood. I don’t look much different: still have all my hair and don’t have to endure surgery, chemo or radiation treatments. I have gained some weight, but that’s typical for women my age, and the daily pill makes my eyes puffy so I look older, and tired. Much of the time I am tired, and my joints hurt and sometimes I get cramps in my feet. We don’t know if those things are because of the disease or the pills, and what does it matter anyway?
A few weeks after the diagnosis the regular doctor said my case is “a testament to the ability of the human body to compensate under extreme duress.” That makes me feel strong, but leading up to the diagnosis, weird things were happening in my body. As my white blood count crept up to more than 25 times the high end of the normal range, my spleen swelled (I didn’t know what that odd feeling was below my left ribcage, but it didn’t hurt so I ignored it), I was always conscious of my heart thumping, I slept badly and woke up frequently all sweaty. Through the cold winter I slept in nothing but a lightweight tank top, and often changed it a couple of times during the night, and kept a bedside fan running. I figured it was just menopause.
Now, more than a year in, things are pretty good.
Sometimes I skip a dose of my lifesaving medication. I can’t explain why, except that it’s annoying and depressing to be dependent, probably for the rest of my life (which statistically is close to 30 years left!), on a pill whose price for a year is about three times my annual salary. It’s a racket, for sure, and it makes me mad, and I want to protest. It also raises all kinds of ethical questions.
Is my life worth it? Is my insurance plan absorbing the cost, or are others being impacted by my treatment in the form of higher premiums?
Can I refuse treatment? How long will I live, if I do? What would it be like to die of leukemia? Do I owe it to my family to stay alive artificially in this way? Does God want me to die (because he gave me cancer) or live (because there’s a good treatment)? Is there some important life lesson here that I should be learning as a result of this burden, which honestly is not really such a burden?
Is it selfish for me to feel grateful? Is it selfish to feel guilty? How can I give back enough to the world to justify this cost of keeping me alive? Do I have survivors’ guilt or is my feeling just pure sadness? How can I justify feeling sad when I’m not really that sick?
The real answer is that I should just live my life. I know that in my brain, if not in my heart. I will try. In the face of weird cancer, I will try to live normally, gratefully, hopefully.