by Tom Weston
One summer day while walking with friends I got a phone call from my cardiologist. I had gone to him the day before because I was getting out of breath just walking, but I’d checked out fine, and he had sent me on my way.
“Your blood tests came back and the numbers are really low.”
“How low? ”
“The lowest I’ve ever seen.
You need to pack a bag right now and get yourself to the hospital. ”
“A big bag, or small bag?”
“I’m sorry, Tom. A big bag.”
Before I knew it I was at Columbia Presbyterian Hospital and my friends were visiting and quickly accumulating into quite a gathering. In the hallways and to each other the staff were referring to me as “leukemia.” But they had yet to diagnose me and refused to tell me until they could, officially.
I spent the weekend there mostly with friends, drinking red wine and partying like I had won the lottery and it was my hotel room. (For months therafter I would mistakenly refer to it as “my hotel room,” before correcting myself.) Somehow I had taken this stupendous news and made it celebratory. It was weird and maybe hard to understand, but at the time it was magical. By Monday my brother got me into Memorial Sloan Kettering, just kitty corner from where I was, and I had lots of fun with the ridiculous 50 yard ambulance ride.
But I was glad to have transferred, because apparently it was all about nailing down the precise diagnosis before beginning any treatment protocol. It took them a long time to figure it out, and the clock was ticking. I needed a bone marrow transplant, yesterday, and we were just beginning the search for possible matches, which was already way late.
Meanwhile, when they did figure out the final diagnosis, it was not good. A particular genetic defect made all the difference. It was the “5Q negative” genetic marker that made my chances of surviving a year between 5 and 15%. My boss came to see me around this time. We were very close. I told him this and he reassured me that whenever I made it through, there would be a job for me at the school. Well, it turns out he had the maintenance crew throw out 10 years of my stuff the next week. He couldn’t handle it. Few could. I saw the people around me change into all shapes and forms upon hearing the news and confronting their perception of me and what they thought was my destiny. Saying goodbye for the last time in their minds to the person standing before them.
The thing was, and what people couldn’t possibly understand, was that I found myself awash an object-less sea of gratitude. There was nothing in particular or at all that I was grateful for. It was just an overwhelming sense of gratitude, of Grace.
I became my own field commander and cheerleader. I delegated a point person to vet out friends and family coming to visit, or often really, to say goodbye. I was told I would have four months of treatment and then four months of recovery, then another four on and off, and finally a six-month stint as a present day boy-in-the-bubble. I would be in what they called “reverse isolation” where any visitors would have to don a mask, gloves, and gown every time they went in and out. This was what they prepared you for the most–the psychological aspect, the isolation. As it turns out, I was so drugged up that I didn’t suffer much in that way. Then, at 40 years old, I spent the next nine months living with my parents as my caretakers.
They were my last choice by far. But in the end, and after my girlfriend at the time (understandably) bowed out, that’s who it had to be. We learned how to live together in various one through two bedroom apartments around the city, courtesy of friends and family. I spent most of my time in the fetal position, being coaxed to drink water that tasted like poison, swallow pills by the fistful, up to eight times a day, and eat some of the ice cream which had become my only food option for many months. This was because I had xerostomia, or permanent cottonmouth, from the total body radiation, along with nausea from it and the maximum doses of chemotherapy. The ice cream was wet and soft and palatable. All normally healthy food became anathema since the closer it was to the earth the more it was a danger to me. I had way too few white blood cells, and hardly an immune system for that matter, and everything became turned upside down. Soon fresh vegetables became etched in my mind as “bad food,” but the deader the better. Nothing from the earth. That could kill me.
Meanwhile, I was developing some sort of a relationship with my parents. Grace, again.
After a grueling year, I made it to the first and most important benchmark, when the odds of surviving go up greatly. By that time my yoga practice consisted of spending up to five minutes getting my legs up the wall, as my fascia/connective tissue had shrunken considerably, along with the rest of me. I lost 40 pounds, and didn’t have much to spare in the first place. My daily shower was my nemesis–so so teeth-rattling cold–a primal fear which demanded a peculiar kind of courage.
And the rest of my day and life consisted of overcoming fear at all costs. We all knew that the common cold or any small complication could kill me, and that was the elephant in the room. So every time a complication did arise, each emergency procedure, urgent care visit and other alarms went off, I just returned to the image of each “event” as a small bump on the road. To my mind there was no doubt about it. I knew I must and would survive for the people who love me, if nothing else. So what seemed like mountains to most were mere molehills for me. I did my damnedest to share this perspective, but it was hard.
Surviving was weird. Technically I am cured, as the cancer was in the bone marrow that is now someone else’s. My blood type changed from B+ to 0+, and is seven years younger, as I like to remind people sometimes. Some of the long-term side effects that they warned me of have definitely kicked in. Most obvious are the cognitive and dental ramifications. I definitely have “chemo brain,” which is why it is so hard for me to remember people’s names and faces. This is the hardest part of teaching yoga for me. I fear that students who have taken my class several times will be put off if I don’t remember them or forgot their names. I only hope that they forgive me. Another long term effect is the cottonmouth, which has led to a lot of unwelcome dental work. Anemia turned out to be another side effect in my case, so running and cardio are out. Otherwise, I’m alive.
Will I ever again reach that sublime state of Gratitude?
Unfortunately, I don’t think so.
Do I want to? Absolutely.
Stay open to Grace.
Om Namah Shivaya