I loved Christmas. What boy didn’t? Especially a greedy little urchin like me, who measured Christmases by the size of the pile of gifts I’d get, and whether or not I got all the G.I. Joe paraphernalia I asked for. It wasn’t a spiritually uplifting, get together with loved ones, Jesus our savior is born kind of thing. Christmas was all about the toys. A week off from school was pretty cool, too.
Later, I learned to dread Christmas. It scared the shit out of me.
In December 1998, six months after my daughter Kaitlin was born, I had my first fever. It was a whopper, 103 and change. I didn’t feel well, then body shaking, teeth chattering, chills. For the next two years, like clockwork, every three months or so, I’d get a raging fever and night sweats.
In the Fall of 2000, my body shut down. The coughing, itching and fevers wouldn’t stop. I went to see a chest specialist. He ordered every test in the book and a full body CT scan. He told me I may have cancer, probably some kind of lymphoma, given my symptoms and the fact the lymph glands in my abdomen were the size of hand grenades. I was 34 years old.
My parents joined me, my wife and daughter for Thanksgiving. The biopsy surgery was scheduled for early the next day. There didn’t seem much to be thankful for.
Christmas No. 1
A lymph gland in my chest was taken out and biopsied. It was Hodgkin’s lymphoma. I started Stanford V treatment, I think the second week of December. I had twelve straight weeks of chemo.
Kaitlin, my daughter, was clueless about my illness. She was a cute little kid, enjoying her second Christmas. It was an all day affair. Open something, play with it, open something, play with it…
I was scared, but hopeful, that Christmas. Yes, I was diagnosed at the most advanced stage of the disease, but I had a really good doctor, and I was tolerating treatment pretty well. After the chemo, radiation was next. My radiation doctor and I reviewed the latest CT scan. “Your tumors responded beautifully,” he told me. I felt great. Three and a half weeks of radiation to put the nails in the cancer’s coffin.
Christmas No. 2
In October 2001, I had my six month check up after radiation was done. I had a dry cough that wouldn’t go away, but otherwise, I felt fine. After a chest x-ray, my oncologist told me he thought the cancer had returned to my lungs, and left the room. Maybe that’s how he learned to deliver bad news. Let me deal with it myself. He re-emerged and we talked about what to do next. More chemo and an autologous stem cell transplant.
Again, the second week of December, more chemo. “Salvage” chemo, like your body is trying to be salvaged. A more sexy name is “de-bulking” chemo. This isn’t namby pamby out patient chemo. This was ICE, inpatient, constant drip for 72 hours. I did well with Stanford V. ICE kicked my ass.
I got a couple weeks off. My second round was scheduled the last week of the month, the week after Christmas. Yes, another Christmas with cancer. Another Christmas spent trying not to think about dying, or having a daughter grow up without me. A Christmas without hair. To be honest, I don’t remember much about that Christmas. It was the three of us, Kaitlin had fun, my wife and I tried to live for the moment. Another long Christmas for my daughter. Open something, play with it, open something, play with it….
My fears seemed to be coming true. Being treated for cancer is bad enough, but there’s always that fear that if it does clear up, it’ll come back. For me, that’s just what happened. But, I was still a father and a husband. It was Christmas, and I did my best to get in the seasonal spirit.
The next week, another 72 hours of ICE, nausea, exhaustion and general, all around misery. One thing I’ve learned about cancer treatment, if you can tolerate misery, you’re more than half way home.
That wasn’t enough misery. Two rounds of ICE only got half the job done. Went to another hospital for the transplant, had another miserable round of inpatient chemo (this time, DI-CE) which seemed to clear up the tumors. I moved onto getting blood stem cells removed, high does chemo (six straight days of chemo), then getting my stem cells put back. It wasn’t as bad as I’d feared, but it was pretty awful, like a month long hangover. The process was like going on a month long bender with none of the benefits.
But I was back in remission. That’s all that mattered. I tried to keep positive thoughts.
Christmas No. 3
I got the call in early December 2002. I was at work. The transplant coordinator gave me the latest CT scan results. Three tumors were in my liver. I was shocked. I had no symptoms. It also looked like I was running out of time. As far as I was concerned, this was no longer an uphill battle, I was facing a cliff.
Afterwards, I remember looking at myself in the mirror and thinking, this is how a dying man looks. I am dying of cancer, and this is how I look. Visions of being bed ridden, with fevers, night sweats, coughing and itchy skin utterly out of control ran through my head. I started planning my funeral.
My doctor told me my last hope for a cure was an allogeneic bone marrow transplant. I’d undergo chemo to (hopefully) get into remission and bone marrow from a donor (hopefully one that’s related) would be infused. That new marrow would produce a new immune system, which is supposed to kill off any remaining cancer cells. The new immune system could also attack my healthy tissue, too. Immune systems attack foreign things lurking in the body. If it comes from someone else, your whole body is foreign. It’s my understanding that an allogeneic bone marrow transplant is the riskiest kind of medical procedure you could have. That why only those of us facing certain death undergo it.
Christmas was not fun for me. We bought a video camera, so Kaitlin would have some video of me, her departed father. She was four at the time. I didn’t think she’d remember me if I died. Dads are supposed to have fantasies about their daughter graduating college, getting married, having kids of her own. I didn’t think I’d be around to see her get through elementary school.
January was the time of second opinions (and also of my 37th birthday). One was, “There’s no easy way to tell you this, so I’ll just come out and say it. You’ll never get rid of this disease.” That is the easy way to say it. This doctor could’ve told me, this disease will kill you and there’s nothing you can do about it. He told me he’d never had a patient cured with an allogeneic bone marrow transplant. The second, second opinion was that the transplant may cure me, but no one could really say what my chances were. He estimated, without a transplant, I’d be dead in a year.
Kids don’t learn by what you tell them. You teach them by what you do and how you act. I figured, if I couldn’t teach Kaitlin by how I lived, I’d teach her by how I died. If I was going down, I was going down swinging. I had more chemo, got into remission number three in March 2003. My brother and sister were tested to see if they were a good match to donate bone marrow. My sister was, my brother was not. I had the transplant in May 2003.
Christmas No. 4
November 2003 was time for a follow up CT/PET scan. Once again, the end of the year, the time for bad news, pain, fear, dread and sometimes, terror. The time when death seemed to be just over my shoulder. Winter was the time for cancer. My original diagnosis and my two relapses were discovered in November or December. Here I was, all over again, in November, waiting for news. Insanity is doing the same thing over and over but expecting a different result. I’d been treated for cancer over and over, but it came back over and over. Why would this time be any different?
After the scan, my wife and I sat in my doctor’s waiting room. I was shaking and crying, convinced more bad news was coming. After all, it was November, and Christmas was just around the corner. Only this time, there would be no second or third chances. This was going to be the bad news that ended all bad news.
There was no bad news. No signs of cancer, and the blood tests showed my new immune system was hard at work, especially in my liver, where the last tumors were found. Christmas 2003 was like breathing fresh air again. I didn’t seem to have a care in the world. I started thinking I was really going to beat cancer, maybe even grow old, and help my daughter grow up. I’ve been in remission since March 2003.
Thankfully, he wasn’t my bone marrow donor, because he was diagnosed with multiple myeloma in June 2004. He had two more Christmases with his wife, three sons, friends and family. Shortly after Thanksgiving 2006, his wife called, saying Bart had weeks to live. He died in early December, at the age of 46. His wake and funeral were about ten days before Christmas. 2006 was my first Christmas without my brother. Because Bart’s not here, cancer is with us every Christmas.