When I was diagnosed with PML my first question was “what is PML?” And by that I mean beyond what the initialism stands for (Progressive Multifocal Leukoencephalopathy). I’d never heard of it; most people haven’t, although I do hear it more and more these days in those laundry lists of potential side effects that get rattled off by a voiceover artist at the end of drug commercials on tv – you know, “may cause diarrhea, blindness, PML, Alzheimer’s disease, or your ears to fall off, but hey… give it a go.” I’ve had more than a few worrying looks of utter confusion from doctors and nurses in ERs when they ask, “any other medical conditions we should know about?” And in general, the look I get when I answer the question “why are you in the wheelchair?” with “because of PML” is about the same as if I’d answered “because I iron my own bread rather than toast it.”

Cancer is different. Everybody has heard of it. Everybody knows, or thinks they know, what it is. Myself included. But if I’ve learned anything this summer, it’s how little I know about cancer. I had an aunt that died of leukemia. We used to have a resident here at Stonewall Gardens with a brain tumor. I know someone with lymphoma. What do they all have in common? Cancer. Leukemia is cancer in the blood or bone marrow. A brain tumor is a growth of cancerous cells in the tissues of the brain – well, a “malignant” one is, it’s possible to have a “benign” (harmless) one, but I’d argue anything growing in your brain that’s not brain is worrisome. And lymphoma is a type of cancer that originates in the lymphatic system (whatever that is) or lymph nodes. Three very different diagnoses, but all cancer.

At its most basic, cancer is the uncontrolled growth and spread of abnormal cells in the body. Normally, cells grow and divide in a controlled manner, replacing old or damaged ones as they do. But cancer is a hiccup in that process; when cell growth and division is out of control it leads to the formation of tumors or the spread of cancerous (damaged) cells to other parts of the body. Cancer that has spread from its original location to other parts of the body is called ‘metastatic’ or Stage 4 cancer; it’s when abnormal cells “break away” from the primary tumor and travel through the bloodstream or lymphatic system (there it is again) to form new tumors elsewhere.

Fortunately, if that word can ever be used in the same sentence as cancer, I have Stage 1 adenocarcinoma – a tumor in the upper lobe of my right lung that was caught early and has not spread elsewhere. Which, they tell me, is treatable and survivable. I know how to survive; in fact, one friend, on learning of my diagnosis, remarked, “if anyone can beat this, you can.” He is very kind and I am grateful for his confidence in me. But the path to survival leads through treatment, which is the crossroads I am at right now.

The early frontrunner for a treatment option was surgery. Just cut it, and the affected area, out. That makes a certain amount of undeniably logical sense. But aside from not wanting to lose a part of my right lung, which I’ve grown rather attached to over the last 59 years, my pulmonologist raised the question of complications from surgery, particularly given my PML diagnosis, and characterized the surgical option as “high risk.” Bring on the consultations!

My first was in Eisenhower’s Pulmonary Lab where I underwent a full battery of breathing tests. You know when you see an athlete in training and he’s jogging on a treadmill with what looks like a snorkel taped to his mouth and connected to a machine by plastic tubing? That was me. Minus the jogging and the treadmill. And the athleticism.

Then I went on to meet with an oncologist. It was a surprisingly brief meeting. He said, “I’m the one you’ll see if you need immunotherapy or chemotherapy.” If? Learning mode: on. So I said, “isn’t chemotherapy the treatment for cancer?” Turns out it is a treatment for cancer, but not the treatment.

There are options. Every case is different, but in mine the aforementioned surgery is one. Immunotherapy and chemotherapy are both used to treat cancer, but they work in fundamentally different ways: chemotherapy uses drugs to directly kill cancer cells, whereas immunotherapy helps the body’s own immune system recognize and destroy cancer cells. And then there is radiation.

Radiation therapy – or radiotherapy – uses radiation (usually high-powered X-rays) to kill cancer cells; it may be used independently or alongside other treatments, like surgery or chemotherapy. There are two main types of radiation therapy: external beam radiation therapy (EBRT) and internal radiation therapy.

Radiation therapy kills cancer cells, shrinks tumors and relieves cancer symptoms. It may be used as a standalone, primary treatment, or it may be used to:

• shrink tumors before other cancer treatments, like surgery (neo-adjuvant therapy).
• destroy any remaining cancer cells after surgery (adjuvant therapy).
• kill cancer cells that return after previous treatment.

Radiation therapy can also be used to destroy benign (noncancerous) tumors causing symptoms.

I met with a thoracic surgeon who, after reviewing my case, concurred with my pulmonologist that surgery was too risky an option for me. That was the first ten minutes of a thirty-minute appointment. We spent the remaining twenty minutes talking about my dog Gordon and how he is not just a good dog but might be the goodest dog in the world.

So my next consultation is with a radiation oncologist, a doctor specializing in radiation therapy, since that seems to be where all this is heading. There is still a lot to learn, and a lot to be decided. For example, if he recommends EBRT, there are seven different kinds (3D conformal, intensity-modulated, arc-based, image-guided, particle, stereotactic, and intraoperative).

Cancer and cancer treatment is not a one-size-fits-all affair. That’s something I’ve learned this summer.

In many ways, PML and brain surgery prepared me for all of this back in that dreadful winter of 2006-07. Then, understanding the diagnosis while becoming a full-time patient was a trauma in addition to the inherent insecurity and anxiety of placing your life, literally, in the hands of others (the doctors, yes, but let’s not overlook the nurses taking vitals and starting IVs, the front office staff making and coordinating appointments, and even our driver here at Stonewall who gets me to and from those appointments).

This time around I’m no less frightened, but I’m much more ready to accept that I have a very serious, life-threatening disease and I need to do and undergo these things to mitigate that threat.

It may sound like bravado, but to that I say: let’s get on with it.