I caught myself singing in the shower the other day. Quietly, to self, to protect Pete from my off-key-edness while he sat in the next room. But I had been lathering and humming and crooning for a couple of minutes before I realized it and wondered: hey, when was the last time I did THIS?
I can’t even remember. But not for a year at least (can you believe my cancer diagnosis happened nearly a year ago already? I can’t). Here I was though, feeling good enough that I wanted to sing a beautiful tune that is so simple and lovely that it makes me cry almost every time I hear the full song. But there were no tears this time. I was humming it with thoughts of pure joy and love.
I wrote a month ago about turning a corner emotionally, so this latest swell is another notch on my upward, post-cancer trajectory. It has not gone in a straight line of course, as my emotions are so tied to my physical well-being, and after I had published that last piece I spent at least a week wallowing because my energy levels were not keeping up with my aspirations.
I was also a few weeks into my new round of maintenance drugs and was not settling into them at all. I felt poisoned. The two pills required every morning were skidding down my throat and then expanding to fill my chest. My appetite was down, my heartburn was up, and I pegged my energy levels at about half of normal.
The worst part of it all was that I knew I had twenty months left to go. Torture me in the short term and I can take it, prescribe a couple of years and I will struggle mightily with it.
But I wasn’t sure what I could really do about it. Or, more specifically, what my doctor would let me do about it.
So, in advance of my next scheduled appointment with him, I armed myself with knowledge. Acute promyelocytic leukemia is a rare cancer so any information about it, other than in complicated medical journals, is hard to find. But I poured through anything and everything I came across, and I scoured support groups to review similar cases. (Just last week this came out, which if anyone is interested in knowing more about what I have, is the best and easiest article to read that I’ve found.)
I won’t get into the gritty details here but my summation after all the research is that I could probably stop the medication. The oral chemotherapy regiment was being prescribed just-in-case, but with no current proof that it is required to keep me in remission.
My doctor couldn’t disagree. He told me of trials that are currently underway to test whether maintenance chemo is necessary and so far the results were leaning in favour of stopping it (although they are only two years into the five required to determine results). There will be a risk, he said, and we’ll both feel like jerks if I stop and then relapse.
But the ultimate decision was up to me. I had to weigh the quality of my life for the next two years with a risk of relapse. It is a small risk, but a horrifying one, considering how close I came to death and the hell that I went through to be kickin’ today. However, the alternative, to feel completely ill for almost another two more years, was one that I couldn’t bear. I believe that even the consideration of stopping the treatment caused my emotional well-being to improve.
And so I decided to partially stop. I am still taking one form of oral chemo that is less oppressive, and then one other drug for two weeks every three months that is basically the first line of defence for this leukemia (so that if any asshole cells are still lingering, they will be taken care of). And maybe once a little more time has passed, I will stop all of them entirely. Others have done it successfully and I will consider doing so as well.
Within days, the effect was clear and positive. I no longer feel poisoned. I no longer feel enslaved by the drugs. I have way more energy and it increases every day. It allowed me to play a full eighteen holes of golf and even beat Pete at the sport for the very first time ever (maybe cancer has given me golfing superpowers? ’Tis my next topic to research). It allowed me to blow past my usual bed time of 8pm once last week and dance the evening away with my sister at an I Love 90s concert tour.
It led to my momentous singing in the shower.
I still accept that my trajectory will not be a smooth one. Just the other day, I used a lotion that I haven’t since I was in the hospital and just the smell of it brought on a stressful flashback and tears. I’ve come to expect and accept such downswings, and to try my damnedest to view them for what they are: inevitable episodes that will pain me at the time, but will aid in cleansing me emotionally.
As long as I’m trending up (and continuing to kick Pete’s ass at golf), then I will continue to have something to sing about.