In 1995, still trying to get pregnant, I was diagnosed with cancer of the immune system. It was a moment that changed my life. I can still feel echoes of that shock. I still remember my first oncologist, trying to push chemo on me, and when I asked for information about the substances he was recommending, his nurse rummaged through dusty closets and came up with nothing. I found a way out of despair by learning all I could to save my life. Crucially, I learned that Non-Hodgkin’s B-cell lymphoma comes in three varieties, slow-growing, intermediate, and fast growing. The fast ones are often curable, but rare. The slow ones are best not to treat right away (that first oncologist was a greedy liar), respond well to chemo initially, but eventually they’ll turn intermediate and kill you. Median survival? 7-9 years. Ugh. One thing I hold against conventional medicine is that it’s so damn depressing, the way it presents information to patients.

I spent several years studying both the conventional side — finding more hopeful stats — (thank you Fox Chase Cancer Center for making your library so patient friendly!), and the alternative side. The alternative side is good at giving people hope and pluck. I spent some time experimenting with various concoctions they recommended. And while sifting the dross from the potential gold which included talking to other lymphoma patients who also had the gumption to experiment, I found two alternative treatments that merited an “A” on my scale. One wasn’t of use in lymphoma, which is usually disseminated (metastasized) by definition. That was hyperthermia (which has since made limited inroads into conventional cancer treatment). The other one was Coley’s Toxins. I wrote one of the first well-researched internet articles on the toxins. Coley’s Toxins had been blacklisted by the American Cancer Society for many years as a quack treatment, and are not conventionally available to this day. They are cheap to make, and unpatentable.

My approach, recommended by my next oncologist, was to do “watchful waiting” until the disease progressed. When it did, I availed myself of the various toxic drips they give to cancer patients. By that time, they were accompanied by monoclonal antibodies — bioengineered thingies that run through the immune system, gobble up B-cells, and improve the chemo’s effectiveness. I also did a rare treatment that gave me a year of remission called Bexxar. But then, in ’07, the lymphoma speeded up (underwent cellular transformation) and tried to kill me. I got hit by very harsh chemo. Spent that summer doing treatments, transfusions, and Neulasta injections, weak as a new-born chick, wondering if my hair would ever grow back.

And then came the worst day of my life, when the oncologist (who was just out fishing for warm bodies for his transplant program) told me in about 3 minutes that the chemo did not work much, to go home, and talk to the hospice. A clinical trial? “Too late,” he says! He also had the temerity to push “palliative chemo” on me which he admitted on further questioning would probably destroy my kidneys and what little remained of my bone marrow. I fantasize every Halloween about going out in a sheet to haunt this SOB.

Grieved terribly for couple of weeks, and then got really mad. I started calling cancer centers from coast to coast looking for a clinical trial. Was offered various heavy-hitting chemos that would have killed me. Was turned down by a private trial which would have ruined me financially. Then my caregiver drove me to two cancer centers on the off-chance they might have something. The second one paid off. I was accepted into a Danish clinical trial for a new antibody that has since been approved — but not for my kind of lymphoma. Life is full of ironies. And it so happened that I found the only humane oncologist of my entire career as a cancer patient. He looked me in the eye (tumors visibly sticking out of my belly and groin) and he said, “I will never give up on you.” And he kept his promise. Thank you, doctor Myint!

So… I went through the clinical trial for two months. It helped some. More importantly, it gave me the strength to go to Mexico and begin treatment with the toxins. The trial also bound me to be ct scanned every three months for two years, so my recovery is extremely well documented. Four months after I began the toxin treatment, my ct scan showed “massive shrinkage” of all the masses in my belly! What a day! The doc who removed my kidney stent remarked that such a thing almost never happened in his career as a urologist (the cancer had been pressing on my ureter).

It turns out that my internet article on the toxins had been noticed by a Canadian executive who was researching immune therapies for cancer. So inspired was he that he actually went to the Library of Congress to pore over doctor Coley’s notes from the early 20th century, and then built a lab to replicate his process. He wrote to me to tell me the toxins are about to be manufactured to modern standards, but I lost the letter. When I “was dying” I remembered his name, we talked, and after looking around, I went for treatment at the CHIPSA hospital in Tijuana, where they taught me how to inject myself with this substance via diabetic needles. Maybe the hardest thing I have ever done. It makes you ghastly ill for a day or two, the injection site is very painful for a week, and you have to do it three times a week. Argh! Horrible. My caregiver read me Quinn’s Ishmael when I lay there waiting for the effects to begin, to take my mind off the feverish horror to come. As I understand it, the toxins jolt the immune system into action, into recognizing the cancer cells for the threat they are, and killing them.

I got through by faith and stubbornness: I kept repeating to myself that this stuff works, and I’ll just keep on doing it no matter what. And so I did, for 3 years, and it did work. Thank you, Cameron Wookey, Don MacAdam, and Gar Hildebrand– the crew that helped me do this heroic thing. I could not have done it without you. And to the CHIPSA hospital, which in its reopened form is providing treatment and hope to lots of patients, and recently held a big all-paid celebration for us survivors.

William Coley, M.D., with heartfelt gratitude

I have been in full remission for 9 years now. And recently I have begun to think of myself as a person who no longer has lymphoma, though the lit insists low-grade follicular lymphoma is incurable. Early on, someone told me, when you have cancer, you have to throw every book at it. That’s what I did. And I learned so much I knew when to say no to more chemo, and take the road less traveled by. And it’s made all the difference.

 

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