To trained eyes, my biopsy specimen revealed the foe: low-grade, follicular, small-cleaved lymphoma, grade I, non-Hodgkins. A CT scan showed its location: pretty much everywhere which added Stage IV to the diagnosis. I felt like one big blob of cancer.

Robert E. Ruiz, MD, PhD

Incurable. My type of lymphoma was incurable. At best, we could expect chemotherapy — my only option at the time — to slow the disease, but for how long was anybody's guess. Sooner or later, it would come back and require stronger, more toxic drugs. And then the whole cycle would repeat, except that remission periods would decrease after each subsequent treatment.

Eventually, I'd run out of options. Translated, I would be spending my future undergoing a series of treatments, each more debilitating than before, as I slowly marched toward death.

Dr. Kaminski put a much more hopeful spin on these facts, but I was clearly facing a formidable foe, and I certainly wanted to increase my odds. I just wasn't sure what I was supposed to do. And so I maniacally started a crash course in lymphoma, attempting to understand how my body had betrayed me. And I drove Alex crazy.

I'd forgotten everything I knew about science, which wasn't much to begin with, so I had to review the lymph system and the function of cells and how they go awry. I scoured the Internet and found it littered with sites but had no idea how to judge the veracity of the information or whether or not it applied to me. I whined that I had to learn a whole new language: Medicalese. Seriously, why say "bilateral axillary lymphadenopathy" when saying the lymph nodes in both armpits were swollen would be much easier? I swore I was going to get back at doctors for all their big words. The next time we built houses for physicians, I told Alex that when we made selections, I was going to ask for their choice of "conflagrated terra" and see if they could figure out that I really meant bricks. He wasn't amused.

And I peppered him with questions. Constantly. After all, Alex graduated pre-med so it seemed perfectly logical to appoint him my personal lymphoma tutor. Big mistake. How could he possibly have known any more than I did? And in the frenzy I was in, I hardly noticed that he was struggling with his own fears.

After days of bombardment, Alex finally said, "Betsy, you're not asking for a crash course. You're trying to go to medical school without basic biology." Ouch. I felt like the dimmest bulb in the chandelier, but he was right. How could I possibly learn in two weeks that which I had ignored for a lifetime? Now what?

We both took a deep breath. Alex became much better at answering my questions. Or maybe I just got better at listening. Whichever it was, I acknowledged that cancer was not going to wait for me go to medical school. We'd have to leave the technical details to someone who had. But who?

We decided that we were at least capable of finding the best lymphoma specialist in the country, and our research kept leading us back to Michigan. One lady at a very prominent organization told me, "I'm not supposed to recommend physicians, but Dr. Mark Kaminski is one of the world's leading lymphoma experts. Perhaps you should try to see him." It didn't take long for Alex and me to realize how lucky we were that I had landed in Dr. Kaminski's care and that "world class" was a mere 15 minutes from home.

Nevertheless, I remained baffled at how to play my new role as a cancer patient, and I had no idea how to forge a relationship with the people I was trusting to save my life. I desperately needed answers to questions that I never dared to ask, at least not so directly as the ones you'll read in the next entry.

Coming Tuesday, Oct. 5: Dear Doctor

Betsy de Parry is the author of The Roller Coaster Chroncles and host of a series of webcasts about cancer. Find her on Facebook or email her.