Smug Sounding But Sincere Philosophical Advice on Dealing with Peripheral T-Cell Lymphoma NOS

mansfield 1365 days later we find ourselves all alone at a picnic area near the summit of Mt. Mansfield, the highest mountain in Vermont. We’re on the south side looking down at 180 degrees of spectacular scenery, and behind us clouds rush over the summit, revealing a patch of blue sky. A waterfall of light pours through the opening and cascades down the side of the summit, progressively devouring shadows. Or perhaps the light’s more like lava because a waterfall is always there pouring forth, and this light is creeping, shimmering its way down, illuminating boulders and green growth.

judy-walkingI point it out to Judy, whose short, wavy hair ripples in the strong wind. She’s never seen anything like this lava flow of light either. It sure beats last July when we were perched on the balcony on the fifth floor of Roper Hospital, Judy tethered to a chemo dispenser. This light overcoming shadows in the mountains is an apt analogy of how we feel now one year later after six 96-hour sessions of chemo, a stem cell transplant, and radiation. I say we, but it’s Judy who has undergone all of this, Judy who makes Ernest Hemingway look like Woody Allen when it comes to stoicism.

* * *

No one wants to get cancer, but you certainly don’t want to get Non-Hodgkin’s Peripheral T-Cell Lymphoma, Not Other Specified. Its very name sounds as if the doctors don’t know exactly what it is, and they don’t. Googling its prognosis is literally life negating. Here’s the first sentence from an article on the disease from a medical journal called Blood: “Peripheral T-cell lymphomas (PTCLs) are a heterogeneous group of clinically aggressive diseases associated with poor outcome.” (sic)

The five-year survival rate is about 32%. When I mentioned these percentages to Judy’s oncologist, he said, “There are only two numbers, 0 and 100. It’s either going to kill you or it isn’t. It’s curable. Stay off the Internet.”

But I didn’t. I kept searching for success stories, but they were hard to find in the haystack of scientific studies, cancer treatment advertisements, information websites, etc., so I decided to write this piece to offer hope to anyone out there who has been recently diagnosed, and believe me, I know that Judy’s cancer might come back. The odds that it is cured are 50% to 81%, depending on what study you look at. But the ultimate scoop is that anyone can die anytime, and we all should start practicing the Buddhist habit of living in the moment because as my pal Hamlet says

If it be now, ’tis not to come; if it be not to come, it will be

now; if it be not now, yet it will come: the readiness is all.

* * *

Okay, let me get down to business to offering hope.

All of those stats on PTCL-NOS are based in the past, sometimes several years in the past, and based on therapies that have been abandoned or modified. 32% of patients have survived, even with those obsolescent treatments.

Furthermore, percentages are abstractions, and you are not.

For example, 85% of non-Hodgkin’s lymphomas are the easier cured B-cell variety, whose success rate is more like 90%, so going by percentages, you should have the B, not T cell variety. But you don’t. Your projected statistical five-year survival rate is twice that of the chances of having T-Cell lymphoma in the first place, so our oncologist is right. You are you, not an abstraction.

As far as treatments go, read this article. How I Treat PTCL-NOS.

If your physician has you on the CHOP regimen of chemo, ask him why not CHEOPS? Tell him you’ve read that it may offer a better outcome, especially the 96-hour continuous infusion delivery system. In Judy’s case, the chemo was not nearly as bad as we had feared. (The stem cell transplant chemo is another story, but then, at least the end of the tunnel is illuminated). Sure, chemo drains you, affects your palate and appetite, and you lose your hair, but losing hair is a good thing. Hair cells divide quickly, like cancer cells. Losing your hair is a sign that the chemo’s doing its job. New drugs have been developed to help deal with nausea.  I liken the 96-hour infusion to sipping a gallon of rotgut whiskey rather than chugging it. Anyway, read the article, and discuss it with your physician.

* * *

Everyone says to be positive, and it’s hard, but now at least you know what you got, and it’s going to be treated, and scientists are working their asses off to find better treatments.

Your life probably seems more meaningful now because you know all too well how ephemeral it is. Your plight offers an opportunity to exhibit grace under pressure, so take every breath and every step with the assurance that it is now, and now is all anyone ever has or ever has had.

And good luck!

3 thoughts on “Smug Sounding But Sincere Philosophical Advice on Dealing with Peripheral T-Cell Lymphoma NOS

  1. It breaks my heart that Judy — and you — have to go through this, but Judy has one special thing going for her — her radiance. I believe that’s the topper to the chemo and stem cells and all the rest. Her secret sauce for recovery, the ingredient that made her gorgeous during treatment, the quality that will see her through the years to come.

  2. That you, Susan! Judy had an all-clear Pet scan just last month, and she doesn’t have another for five more months, so every day seems like a revelation.

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