It’s been thirteen months since my son Max gave me a kidney. And after more than a year of pretty much straight line recovery, last week we hit a pretty big pothole. I was diagnosed with lymphoma. Specifically, something called Post-transplant lymphoproliferative disorder (PTLD). Here’s the Wikipedia definition:
PTLD is the name given to a B-cell proliferation due to therapeutic immunosuppression after organ transplantation. These patients may develop infectious mononucleosis-like lesions or polyclonal polymorphic B-cell hyperplasia. Some of these B-cells may undergo mutations which will render them malignant, giving rise to a lymphoma.
In some patients, the malignant cell clone can become the dominant proliferating cell type, leading to frank lymphoma, a group of B celllymphomas occurring in immunosuppressed patients following organ transplant.
My doctors at Yale-New Haven say this shows up in about six percent of transplant patients. But my lead nephrologist says he’s never lost a patient or an organ to PTLD. That’s obviously encouraging.
So what does all this have to do with heirloom tomatoes? Here’s the story. Over the summer I discovered heirloom tomatoes. If you’ve never tried them, they can alter your entire view of tomatoes. They are absolutely delicious, but very hard to come by, especially here in the northeast with our short growing season. But we are blessed with lots of local farms and farmers markets here so I was able to get them well into October. I found a great recipe for marinated tomato, cucumber, and onion salad. I started consuming vats of the stuff (recipe is below). But in September I started noticing orange/red streaks in my stools. At first, I dismissed it as just tomato residue. But given a history of pre-cancerous polyps, I decided to check in with my gastroenterologist. He said that checking for blood in the stool could be inconclusive, and so, given my medical history (transplant, prostate cancer, etc.), he strongly recommended a colonoscopy. The procedure didn’t find any bleeding (the orange really was tomato residue). But it did find what appeared to be a small area of lymphoma cells.
It took a week for the biopsy to confirm. And within hours of the diagnosis, my GI doctor, my primary care physician, my local nephrologist and my team leader at the Yale-New Haven transplant unit were on the phone with each other deciding on a course of action. This was a level of coordination between two different medical entities (Western Connecticut Medical Group and Yale-New Haven) that was surprising and impressive in its speed and efficiency. The collective decision was that my course of care would be at Yale-New Haven’s Smilow Cancer Center, which has a tight working relationship with the transplant team. They told me that because of the happenstance nature of the diagnosis – no symptoms, just tomatoes – they found the PTLD quite early. Normally they don’t see it until it spreads.
I met earlier this week with my new hematology team at Yale-New Haven’s Smilow Cancer Center. They immediately ordered up new bloodwork. Next week I’ll have my first PET Scan, probably one of the few diagnostic tests I haven’t yet had. That will determine the stage of the disease as well as where it has spread. It will be used as a baseline to determine the effectiveness of treatment.
In all likelihood, I will begin an intensive course of chemo in the coming weeks. Twelve weeks, with treatments every other week. I will lose the rest of what little hair I have on my head, though it should grow back (I asked if any more might grow back and was told everyone asks the same question, but no). While this will disrupt my life for three months, of more concern is what happens after that. I have been on a clinical trial for an anti-rejection and immunosuppressant regimen that involved no steroids and has had no side effects. Because of the lymphoma, I will no longer qualify for the trial. That means a major change in my drugs to something more traditional, but a regimen that most likely has some negative side effects.
They say that whatever doesn’t kill you makes you stronger. If that’s the case I should be Hercules.
Gary’s (Life-Saving?) Marinated Heirloom Tomato Salad Recipe
2 pounds fresh, ripe, heirloom tomatoes sliced thin
2 large cucumbers, peeled and sliced thin
1 large sweet onion, sliced thin, separated into rings
A handful of fresh dill, finely chopped
1/2 bunch of scallions, thinly sliced
1 cup white vinegar
1 cup balsamic vinegar
1 cup granulated artificial sweetener
1 cup water
Combine the water, artificial sweetener, balsamic vinegar and white vinegar in a large bowl. Add onions, scallions, dill, cucumbers, and tomatoes. Cover. Marinate overnight. Enjoy!