phlegm

I am afraid of green phlegm.

Green phlegm ranks right before ingrown leg hairs in terms of fear. But now things are different. I stood looking at my green phlegm in the kitchen waste basket. I spit unceremoniously, then returned for a peak. Until now when I´ve noticed my phlegm I’d follow up with thoughts such as “I wonder if we have any speghetti left”, or “maybe I should call them back”, or “why am I looking at my phlegm?” But green phlegm means a virus, and that is what I don’t want.

I finished chemo and celebrated by spending a week in the hospital. Chemo, which kicks butt and takes names, quickly finds it has no names to take as it successfully kills the evil leukemic cells along with many of the fine, healthy cells who were probably thinking “What the hell did I do?” before they expired. Due to this, a neutropenic fever arises, which is compounded by the body’s bacteria. Now, the body has bacteria, germs, and all sorts of other nasty things. I don’t know what they are, but I guess that the body has more than just bacteria and germs and “all sorts of other nasty things” covers me without requiring further study. Those bacteria, germs, et. al, when the body’s defenses are low, become like the cow who looks up surprised from the field one day saying “Grass…I’ve been eating grass!”. The bacteria, seeing the healthy white cells gone, or worse, lying dead at their post with a “What the hell did I do” look on their faces, realize just how oppressed they were and begin colonizing, growing subdivisions with dirty streets, poorly designed sewage systems, and unattended parks. It is not long before the body begins to be overwhelmed by “bacto-sprawl” and shows its discomfort with a fever.

That is my story. I had growing bacteria colonies in me, ones where the trash was never picked up, where the schools never opened, where expired goods were not removed from the store shelves. I battled with them bravely from a hospital bed while I read, looked at the ceiling, and watched that early 80s group ABC reunite on VH1’s Bands Reunited (They didn’t sound bad). Now I’m home again, with family. I take a pile of antibiotics every day, a shot to bring in white cell reinforcements who will check shelves and ticket speeders, and I don’t want to go back into the hospital. Green phlegm is scary.

McChemo

I go down daily, for a seven-day period, to get injections of 2CDA, the drug of choice for the Hairy Cell Club. I am more tired, but not yet fatigued. Yesterday I took my second daughter with me, and today I took the oldest (ages 7 and 8 respectively). Afterwards we made the obligatory pilgrimage to McDonalds, and then walked around Recoleta, Argentina’s most famous cemetery which is full of mausoleums. I hear more English there than anywhere else in Buenos Aires, as it is a popular tour bus stop. There you can see the graves of numerous famous Argentines, including (drum roll) that of Eva Perón, the country’s most famous woman. And…Argentines are still irked that Madonna would dare play Eva in a film. If you are ever in Buenos Aires, stop and see the Recoleta cemetery and then go to the Hard Rock café, or another restaurant, nearby. There is also a beautiful catholic church next door with a cloisters museum. You might not be into historical museums, but this one offers a great view of the cemetery, making for some great pictures.

My strength remains pretty good. Yesterday was a full day and I did not sleep a lot last night, so really slept hard this afternoon. We commented today that the onset of my leukemia also saw: 1. Our phone system breakdown and remain out of commission for a week. 2. The death of our VCR player. 3. Head lice spread abundantly throughout the scalps of our girls, 4. The pool began to drain…on its own, and 5. Our four-year-old son has a fever.

When it rains….

down to fundaleu

Falling off the wagon requires you to get up again. And when I got up and dusted myself off, I saw that things were different. Gone was the beautiful scenery of western New England, and gone was my wife’s rather large stomach. She gave birth to Elizabeth nine years ago, who ended up having her own complications, and we followed that with Emily and later Andrés. I looked around and saw the bit overwhelming city of Buenos Aires, Argentina, land of beef and Nazis, where we had been living for 6 years. Before that we were in Costa Rica. My children rattled the day away in Spanish. I mention that since we decided to get treatment here in Argentina, requiring me to visit hematologists and, although I have a pretty good command of Spanish, learn a whole new vocabulary and sound like a child the many times I didn’t know the word I wanted, or couldn’t grasp the word they wanted me to know. Ah….language learning.
Unlike the United States, oncology and hematology here are not interconnected fields, so my four hour wait for the oncologist at a nearby hospital proved to be somewhat in vain but fortuitous in that she did not recommend the hematologist at the hospital, nor could she recommend any in the area, but rather sent me to fundaleu (http://www.fundaleu.org/), a well respected leukemia hospital in the touristy heart of Buenos Aires. It was at fundaleu that I had my first flashback to my sojourn of nine years before. In the waiting room there were the same types of people, those with little hair, wasting away due to chemo, the worried expressions of family members, a TV set high above us all, and those, like me, who came and went, got to know the workers on a first name basis, and remembered to bring something to read. At the risk of being trite, it was said that Hitler at least made the trains run on time. Could we find a non-Nazi German around here, the area where I live is full of them, who could show some of those same efficiency skills and keep appointments running somewhat on schedule?

vip club

Nine years ago my wife was pregnant with our first child and we were living in beautiful western Mass. Around her 8th month, or a bit before I became weaker. At first it was more difficult to walk up stairs without getting winded, later it was even more difficult. In September of that year I walked 60 blocks in New York City, in December I returned with my wife to watch the Nutcracker and found it hard to walk six blocks. Finally I went to a doctor and had a blood test. A quick call from the hospital reported that I was only operating on 40% of my blood supply. I had leukemia. I had a very rare leukemia called Hairy Cell Leukemia, which affects around 700 US citizens a year. Due to modern medicine, which has evolved to allow the patient more than a spleen removal, interferon treatments and two more years of life, today’s lucky card carrying Hairy Club member receives a week of Cladribine and usually the good news that the hairy cells have gone bald, that one is in remission, and that one is, “cured” from a disease that has no set cause. My possible link is that I spent my formative years on a farm. Could it be the pesticides used affected me while I ran through the fields ripping off corn ears and chucking them at Robbie and Dave? I don’t know
Cladrine does wonders. It causes no hair loss, I did not waste away, and it lasted for one week. I was declared to be in full remission, along with the other 80% of those Hairy Cell Club members who don’t get the Hairy Cell variant, which is more difficult to eradicate, or the Japanese variant, which I happen to know nothing about. However, my hairy cell days weren’t behind me. Along with the 80% of us who go into full remission, I found out recently I now belong to an even more exclusive group, those 40% who fall off the wagon and go out of remission.