Tomorrow I will have my second chemotherapy session – as an out-patient at the Memorial Sloan Kettering satellite offices in Sleepy Hollow. The building adjacent to, and owned by Phelps Memorial Hospital.
I was diagnosed with lymphoma a little over two years ago, after a small lump in my neck was taken out.
Here is a little background on how I came to need chemo:
At the beginning of the summer I’d had some enlarged lymph nodes in my neck. It turned out that the swelling was probably due to a sinus infection and it cleared up.
However in July I developed a kidney ailment, which manifested itself as a bad case of edema, landing me in Sloan Kettering for six days (should have only been four, but they couldn’t get me in for a thirty minute kidney biopsy and didn’t want to let me out until it got done). Turns out I had something called "Nephrotic Syndrome" later changed to "Minimum Change Disease" and gained over 15 pounds of fluid. Anyway it cleared up pretty quickly (with diuretics; I pee’d my brains out for about three days) and I presumed the Lymphoma Guru who I see at Sloan (Dr. Andrew Zelenetz, chairman of the lymphoma service) would continue with the current treatment plan for my lymphoma – which was to do nothing. For two years I was in the "Watchful Waiting" phase, needing no treatment since I felt fine and showing no symptoms of consequence.
So we were surprised when he told us that the kidney issue was a "classic manifestation of mantle cell lymphoma" and we should start aggressive therapy.
Which I have now done. Tomorrow I have the second of four outpatient chemotherapy sessions. The acronym for this particular chemo is rCHOP. When this is done, I will have three more chemo sessions, each requiring a two day stay at MSK in the City. These sessions will also be two weeks apart. This acronym is ICE.
After this is completed (takes three months) comes the heavy stuff! I will be admitted to MSK and they’ll take some of my stem cells and freeze them. Then I’ll be given "high dose chemo" (no acronym, just "high dose chemo") for about a week – which is supposed to kill everything, unfortunately including my own immune system. The stem cells are then put back in and my immune system starts rebuilding itself. Meanwhile I am hospitalized in isolation.The total hospitalization is thirty (30) days.
Of course we were pretty stunned when the Lymphoma guy told us the last part but within a day or two had adjusted to the whole thing. It seems this therapy is now fairly common. Judy Anderson knows a Maryknoll priest who had it done nine years ago and then went back to Peru. The next time I saw the lymphoma Doc I mentioned the priest to him and he said "Oh yeah I remember Fr. S. D." He had treated him. Depending on how fast my immune system recovers, I could be out in less than thirty days – Zelenetz said his record is 17 days.
The optimal result of all this is that I could go symptom free for five to ten years. Unfortunately the lymphoma is not eradicated. It could also recur in less than five years, so we’ll see. I am actually fortunate that I have an indolent version of this lymphoma, and was able to go two years without any treatment. The fast moving versions of mantle cell can be quite catastrophic.
The side effects of the first chemo session were pretty inconsequential. Of course the oncologists put you on all sorts of meds prophylactically – anti-nausea, anti-bacterial, anti-fungal, anti-viral. The only thing I got was a thrush infection in my mouth, which cleared up with an oral medicine (NyStatin). Otherwise no problems, except a little sleep difficulty.
So we’ll see about the second session – but for sure I will start having my hair fall out. So the day after chemo I will be getting a crew cut. The last time I had a crew cut was September of freshman year in high school, forty years ago!
Signing off. Tomorrow I’ll have to send out emails informing poeple this weblog exists.
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