[Request: If you know me and are in close proximity, do not read this. Talk to me. I am very shy but would like to talk with you]
I thought I was invincible.
The above photo is a colony of Burkitt's cells. Back in 1996 I didn't even know they existed. I didn't even know what lymphoma was. Now I do. It has caused me much pain and suffering, and may prematurely terminate my existence. But at the same time cancer has caused me to re-evaluate my life, why I am here, and what my goals are.
The Initial Diagnosis
On 4 December 1996 I was diagnosed with Burkitt's lymphoma. Lymphoma is a cancer of the lymph node system. Lymphomas are broken down into either Hodgkin's Lymphoma (same as Hodgkin's Disease) or Non-Hodgkin's Lymphoma (NHL). NHL is a collection of lymphoma types, and Burkitt's falls in this category. In NHL types there are three subdivisions, cancers that grow very slow, at intermediate speeds, or high/aggressive speeds. Burkitt's lymphoma is an aggressive cancer. In fact, Burkitt's is one of the fastest known cancers to grow inside man. It can double its size in 3-5 days. As one can imagine, Burkitt's has historically killed at very high rates and very quickly. If nothing had been done I easily would have been dead by the end of the year. At the same time, since World War II and the advent of chemotherapy, Burkitt's is one of those cancers that have seen very real declines in mortality.
Moving on here, I also need to mention the stage classification of my cancer. Since the cancerous cells where located in only one location (my right axilla) it is classifed as Stage I. This was determined by a Computed Tomography (CT or CAT Scan) and Bone Marrow Biopsy (BMB). Any cancer in a late stage, spread throughout the body, is Stage IV. Also of note is whether one has B symptoms, such as night sweats and headaches. I did not, so the complete staging is IA.
There are only two real courses of action when diagnosed with Burkitt's. The first is to refuse treatment, the second is an immediate course of high dose chemotherapy. I was initially given an 80% chance of the chemotherapy putting me in remission. Since Burkitt's grows so quickly, I began my first treatment that Sunday at Virginia Mason hospital. The drug regimen used for Burkitt's is a somewhat modified ProMACE-CytaBOM (no Cytarabine). Confused about what this means? Take CHOP, a standard regimen consisting of four drugs that is used in most lymphomas:
- (C)yclophosphamide [CTX] a.k.a. Cytoxan (alkylator)
- (H)ydroxydaunomycin [DOX] a.k.a. doxorubicin (antineoplastic agent)
- (O)ncovin [VCR] a.k.a. vincristine (plant alkaloid)
- (P)rednisone [Pred] (steroid)
In my case McMaster's regimen (modifed ProMACE-CytaBOM) consists of
- (Pr)ednisone [Pred] (steroid)
- (A)driamycin [DOX] a.k.a. doxorubicin (antineoplastic agent)
- (C)yclophosphamide [CTX] a.k.a. Cytoxan (alkylator)
- (E)toposide [VP-16] (antineoplastic agent)
- (B)leomycin [Bleo]( anti-tumor antibiotic)
- (O)ncovin [VCR] a.k.a. vincristine (plant alkaloid)
- (M)ethotrexate [MTX] (antimetabolic)
- Leucovorin [Leu] an antidote to high doses of Methotrexate
If you are interested in learning about the general types of chemotherapy drugs, try looking at OncoLink's information.
The Unfolding of My Terrible Story - The Human Side of Cancer
So there I was at Virginia Mason on Sunday night, receiving my first chemo treatment. After the nurse put in the IV, I felt nothing. "Wow," I thought, "this is easy." I kicked back and enjoyed the X-Files. When I left on Wednesday I felt quite odd, but not really sick. The feeling persisted through the weekend, but I was not worried.
Monday night I came down with a terrible fever. In the morning it broke after laying in the tub. We went to see my oncologist. I collapsed in the X-ray room and was scheduled to return to VMMC. Before I left I asked him about a peculiar reddened area on my left upper thigh, close to my groin. He told me I probably stretched something. No worry. By Tuesday I had noticed the red was spreading. At first my complaints were spurred, some tests were done, then the mood became very serious. It was some of the worst possible news - necrotizing fasciitis (Pseudomonas fasciitis), which is often dubbed as a "flesh-eating bacteria." The discoloration was spreading like a forest fire out of control. I was told surgery was necessary or I would lose my leg then my life.
In all honesty, the infection in my leg caused nearly 90% of my misery during the first year, not the cancer. The surgery consisted of debridement, or physical removal of the infected tissue. I spent the next week or so in the Intensive Care Unit, I don't really remember much, except when I first saw them take the bandages off. It was this huge hole covering most of my upper left leg. I later learned it covered 550 sq. mm and was originally 20 mm deep. (about the area of a sheet of paper) The wound dressing had to be changed several times a day.
I was home around the time of the new year. I could only imagine what the new year had in store for me. During January I began the second round of my chemotherapy. Also during this time changing of the dressing became untolerably painful. I was taking morphine in large doses, but it was no help. I then ended up on the 15th floor again with high fever. Life for me was beyond pure misery.
The wait towards the end of the month was so slow, but with the end of chemotherapy the skin graft operation would be possible. After several rounds of preparation, my prayers were answered and the graft happened. The skin was taken from my upper right leg, seven 15 cm by 7 cm strips. The week following the graft I could not move my lower body AT ALL. The surgeon carefully checked to see how well the graft was taking.
When things were starting to look good during this week, two detrimental things were discovered. The first one, was the news that a second biopsy in the axilla showed residual Burkitt's cells. This regiment, which takes care of 80% of people, had not completely worked! I was told radiotherapy would be next, then later down the road a BMT would be heavily considered. This hit like a rock! The other bad news was that in both my feet I began to feel this strange tingling sensation, which slowly crept over my feet. Later it was discovered that one of the chemotherapy drugs, vincristine, had caused an extensive neuropathy (nerve damage) in my lower legs and feet. Just my fate, another rare and severe crippling complication to deal with.
By mid February I was home, but things were really no better, except that the graft was taking very well. I went in for a set-up appointment at radiation oncology, then began 22 daily consecutive treatments. Walking was extremely painful; I spent most of the days downstairs on a bed. During this time physical therapists were coming to the house hoping to improve my situation.
March and April brought slow gains. We began to discuss the options for an upcoming bone marrow transplant. It was put off for the immediate future due to a virus outbreak that is deadly to post-BMT patients. I went to Fred Hutchison Cancer Research Center for a second opinion on whether the transplant was neccessary, and if so, would I use my own marrow (an autologous stem cell transplant) or my brother's (he was a 6/6 match, allogenic transplant), which is much more dangerous. My case was brought before a group of doctors there and the decision was that an autologous transplant would be my best hope.
The biggest risk here was that the transplant was unnecessary and worse yet might kill me. This plagued my mind as I carefully decided what was more important. When I turned 22 in May, I was well enough to have a small celebration with my friends. By this time my mind was set; I would have the transplant.
The basic premise of a BMT (hereafter called a peripheral stem cell transplant, or PSCT) is that you store marrow, (same as stem cells), then take an incredibly high dose of chemotherapy to knock the cancer out. You then get your stem cells back and hope they engraft before some opportunistic bacteria or fungus gets you. During that time your immune system is virtually shut down.
At the end of April I had already had my stem cells harvested at the Hutch. I had to get a Hickman-like catheter in my neck, which caused quite a bit of pain for three or so weeks. The pre-conditioning (chemotherapy) for the PSCT began a week or so after my birthday. The three drugs I received where
- Busulfan (antineoplastic agent)
- Melphalan (antineoplastic agent)
- Thiotepa [TEPA] (alkalator)
As I eluded to above, these three old and powerful drugs (approved by FDA in early 1960s) and were given to me in lethal doses. To give you an idea, over three days I ingested over 500 busulfan tablets. Busulfan is also known to cause seizures. Once again I became the victim of chance, one night I had to go to the emergency room after such an event. Then, on May 28, 1997 I received my marrow back. I lasted a few more days before I had to be admitted to the hospital. From there it was a deadly waiting game. I was terribly sick and in the hospital for most of June.
The threat of death does not leave when you leave the hospital. I was still in awful shape, receiving all my nutrition intravenously via TPN (total parental nutrition, known also as "total puke-free nutrition") and being on liquids. I was seen by a doctor every day for the first month or so. The days were long and still full of much misery. The first six months are the most dangerous, that finally passed on November 28, 1997.
I was at risk to catch anything from pneumonia to shingles, so I had to be very careful. And I keep reminding people, but they want to forget, that I am NOT cured of my cancer. I could relapse and die within the month. If a relapse were to occur, after chemotherapy I would go straight to an allogenic transplant using my brother's marrow. These are all "if" scenarios. But at least I'm alive to contemplate them.
DURING MY ORDEAL I CONSTANTLY REPEATED CHURCHILL'S IMMORTAL WORDS
During those dark months I had also turned to several mailing lists that specifically discussed Non-Hodgkins and Bone Marrow Transplants. On the BMT list I could not help but be enraptured by a young little lady named Paigé Wilsek who was had been struggling for many years versus [ALL] leukemia. Her mother's persisent care in posting captured me in a beautiful way. On April 7, 1997 Paigé lost that fight. These days I am so excited to be where I am, but at the same time thoughts of Paige persist. Why am I alive and she is not? Life is indeed very unfair.
Paigé Wilsek Leukemia Memorial Foundation
364 days after Paige's death I lost another friend to cancer. On August 6, 1998 Sandy Boorman, who was my Camp Director at Glacial Trails, passed away from leukemia. Sandy was a second father to virtually all who served under him at camp. I will truly miss his chuckles, patience, and stories. One of the most touching things I ever heard was when I later went to visit his widow Donna. She told me that from his bed Sandy claimed that if I could beat cancer, so would he. Rest in peace my friend. I will neverforget those words of courage.
The Daily, the paper of the University of Washington, published a full page article on my experience on January 16, 1998. You can read it online (alternate PDF) and let me know what you think!
You'll notice in this article that the day I was interviewed I knew it exactly how many days have passed since May 28, 1997. For the first couple of years I would have known that, but now I'm thinking bigger (although for the record, today is Day +3,890).
Right now it's been over ten years since that transplant!! That means the chances of remission are now very slight, although it is certain I do have an elevated chance of developing leukemia due to the unknown long-term effects of radiation.
These days I have come very far. I started to run in 1999 then swim in 2003. Before cancer I did bike some with my family. I put it all together starting in March of 2003 and completed my first (sprint) triathlon. In August of 2007 I completed my first "Ironman" triathlon in 13 hours and 9 minutes. Victory indeed.
I always race in Paige's honor.
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