I recently attended a networking group for blood cancer survivors at Gilda’s Club Delaware Valley in Warminster. We were asked a couple interesting questions….
How did you get the news?
I’ve been told three times I had cancer, the original diagnosis and two relapses (relapsi?) .
I had been deathly ill for three months in the Fall of 2000. I had fevers, night sweats, coughing, exhaustion, itchy skin. I went to a chest specialist, because my “pneumonia” wasn’t getting any better (tumors were in my lungs, not fluid). I had a battery of tests and a full body CT scan.
After the scan, we got a phone call. It was for me. It was the chest specialist. I was in the bathroom, on the toilet. Normally, the polite thing to do is to either ask the caller call back, or tell the caller you’ll call back. I was in no mood for politeness, I needed to know what was wrong with me. So I first learned I probably had cancer, sitting on the toilet, with my pants around my ankles. Not very heroic, but true.
After the call was over, I managed to get off the toilet, pulled up my pants (I hope I flushed and washed my hands), told my wife, and cried like a baby.
To get a definitive diagnosis (lymphoma was suspected, but what kind was unknown), a lymph gland in my chest was biopsied. I think a couple days later, there was another phone call. It was Hodgkin’s (the “good” lymphoma). I was at home ironing clothes at the time. I was relieved to get a diagnosis, because I was sick for a total of two years (on and off), and the cause was a mystery. I figured once we know what we’re dealing with, we can do something about it.
I thought I should start making some phone calls. Then I thought, screw it, I’ll finish ironing first. It was one of those moments when I decided that, in my small way, I was going to have cancer, it wasn’t going to have me. I finished ironing, then made phone calls.
I had chemo and radiation. I was told I was in remission. Six months after treatment, I was back to see my oncologist, Stephen Fiershein, for a check up. I felt OK, had this dry cough, but was fine otherwise. He sent me for a chest x-ray. Some time later, I can’t recall how long, I was back in his office.
I was in an examining room. He told me he had bad news, I’d relapsed. It looked like there were tumors showing up in my lungs on the x-ray. Then he left the room. Dr. Fiershein didn’t offer a shoulder to cry on, hold my hand, give me reassuring words. He delivered the news, and exited. Dr. Fiershein wasn’t new to doctoring. I guess this is the method that he uses, this is what works for him. Given his line of business, he must give bad news frequently.
I cried some more, imagining having to go through all this treatment crap all over again and it looked that much more likely I was going to die. He came back a short time later, after I’d pulled myself together. We discussed what to do next. He also pulled out a chest x-ray done three months after treatment. With a second look, he said there were changes in the three month x-ray, and I may not have really gotten into a remission at all.
The third time I was told I had cancer was in December 2002 (I think it was the 12th). By then I’d had a lot more chemo and an autologous stem cell transplant (in February 2002 at the Yale Cancer Center). I’d had CT scans every three months afterward. The Yale Cancer Center transplant coordinator, Erin Medoff, called me at work in the afternoon. The December scan showed three tumors in my liver.
Two relapses in two years was really bad news. I felt I was on a slippery slope to oblivion. Whatever I was working on at the time had no meaning. The last place I wanted to be was in my office. I told my boss the bad news, and that I had to leave work early and go home. I can’t recall exactly what I did when I got home. I’m guessing a lot more crying. I doubt I did any ironing.
Did the cancer give you any pain?
Before I was diagnosed, just above my right leg would be very painful if I sat for more than a couple minutes. I was told that one of my glands had swollen so much that it would rub against a nerve if I sat. At meal times, I would sit long enough to shovel food into my mouth, then get up from the table. That’s really the only pain from the cancer I can remember.
Treatment, and side effects, were a pain. Before my transplants, I had a lot of chemo and as a result, constipation. It was particularly bad in early 2003, prior to my allogeneic bone marrow transplant. The human rectum is not designed to pass billiard balls, but that’s what I was doing. I remember banging my head on the bathroom wall, to distract myself from the pain I was feeling at my other end. After one would pass through I’d take a peek to see if it was a stripe or a solid. I even passed a cue ball once.
Also before my allo transplant, I had the skin infection from Hell. It’s my guess it was caused by a bug of some sort, which my body could’ve easily handled but for my impaired immune system. It afflicted a uniquely male area of my body, the last place a guy would want an infection. I went to a dermatologist, who didn’t know what it was at first. I eventually got it treated. I had to go to work wearing sweat pants and walk around bow legged for a while. Dr. Fiershein was curious about my condition, so I obliged his curiosity. He said he’d never seen anything like it. I’ll spare you further details.
How did you get the news? Did you have to suffer any pain because of the cancer?
I’m a Roman Catholic who attends mass (almost all the time). On the front page of the church bulletin is a summary of this week’s Gospel, Luke 4:1-13. I read it, and it stated in part, “Jesus feasted on dessert for forty days.” I thought to myself, I’d been going to church all my life, and can’t remember anything like that. Then I wondered, what kinds of dessert could He have eaten for forty days back then? Certainly not ice cream, it would just melt. Baklava maybe. Out of character for Jesus, pigging out like that. Not setting a very good nutritional example for us followers, either. But it made him seem that much more human. Then I read it again, and it really stated, “Jesus fasted in the desert for forty days.” That made much more sense. I’ll blame it on chemo brain.