No Drugs and Low on Blusher

February was an unsettling month. I had an appointment with my oncologist early in the month, and he was delighted to give me the news that my cancer has a particular genetic mutation, epidermal growth factor receptor (EGFR) that makes it amenable to treatment with a drug named Tarceva. Tarceva slows the growth of the cancer cells. Thus, any lingering cancer cells which might be biding their time before once again becoming active will have their plans delayed.

Yippee, you would think, as I did. Well, as I did right up to the time that the pharmacist called to tell me that my copay for the first month of the medication was over $2200. A subsequent call to my health insurance to make sure I correctly understood the drug coverage confirmed that by the end of this year I'd be paying about $10,000, and it would start all over again in 2015 and every year thereafter. And keep in mind that this is in addition to whatever my physician and hospital bills might be, which thankfully have a $4000 annual out-of-pocket maximum, or any other prescriptions I might have, such as for my rheumatoid arthritis. There is no out-of-pocket maximum in drug coverage.

At the pharmacist's recommendation I applied for assistance from a foundation that underwrites drug coverage for people like me.

While waiting for a decision I decided to learn everything I could about the drug, and indeed about what my future might look like. The doctor had already told me that only about 20% of people with my kind of cancer make it to 5 years. (And every time any of the doctors would say such a thing, they were quick to add that "statistics don't have anything to do with an individual patient." And furthermore, those numbers, by definition, are based on patients who were treated before the latest and greatest treatment breakthroughs. Yeah yeah, I get it.) When I had my false alarm in December I was all over the internet, trying to find information about "recurrent lung cancer" and "prognosis recurring lung cancer" and every variation, without much success. I think the medical profession really doesn't want us to know.

I read the studies on the Tarceva site. They were mostly over my head, using acronyms and obscure medical terms I didn't understand. I opened a second window in my browser and slowly and methodically did a search for every term I didn't understand, and eventually I cracked the code.

In all my efforts to learn more about my own possible future, I was using the wrong search terms. Not "prognosis," but "OS," for Overall Survival, or "HR" for Hazard Ratio, a measure of how frequently and/or quickly the 2 comparison groups exhibit the symptom(s) being studied. Not "recurrent lung cancer," but NSCLC for "Non-Small Cell Lung Cancer," and "PRS" for "Progression-Free Survival." Not "treatment for recurring cancer" but "second (or third) line treatment NSCLC." And finally, "maintenance treatment" to describe the limited options available to slow the progression of the disease.

The first thing that popped out about Tarceva is that there are many, many nasty side effects. I totally understand that a condition must be listed as a possible side effect no matter how rare the occurrence, but it doesn't take a lot of digging to figure out the occurrence rate. Many of the serious side effects occur with alarming frequency.

But the most important and profoundly sobering finding was that Tarceva's effect on recurrence is measured in mere months. The median duration between the end of initial treatment ("first line treatment") and recurrence (PFS) in the control group -- the patients not taking Tarceva --  is 4 months; the median PFS in the drug group is 6.8 months. Let me repeat that: 4 months vs. 6.8 months.  Yes, it's statistically significant. But is it meaningful? Do I really want to take such an expensive drug in order to buy myself a couple of extra months? I've already beaten the odds and have passed the median time by which the cancer could have come back. If the results showed 4 vs 6.8 years, maybe. But months? I don't think so.

The foundation finally contacted me, and I was awarded a $7500 grant. That would bring my own cost to $2500 for the rest of 2014, plus another $2600 in January of 2015 before I could reapply for assistance. I decided against taking the drug. My doctor was frank in his belief that this is not a wise choice, and also fully supported my decision about treatment.

Here's the thing: the overall survival rate for all of us is zero percent. We're all going to die. We all know it, sort of, and most of the time most of us don't give it much thought. It's something that's a long way off and doesn't have anything to do with the fact that tomorrow's trash collection day and the day after that I have a dental appointment and today it's raining.

Odds are cancer will kill me sooner or later. I say that knowing that I'm breaking the unwritten rules: cancer  patients, or indeed anyone with a potentially fatal disease, are supposed to Keep a Positive Attitude and be determined to Beat This Thing.  I do have a positive attitude and I'm willing to do a lot to keep myself healthy. But during the False Alarm Episode in December, I came to terms with the idea that I probably won't live to 91, as my mother did, and making it to 71 is certainly possible, but not probable. And you know what? That doesn't freak me out. After watching my father lose himself into the horror of Alzheimer's, I'm much more afraid of Alzheimer's than I am of cancer. And watching my mother die with some warning and several weeks of hospice care, the gathering of the daughters and grandchildren and great-grandchildren and friends and nieces and nephews, I gained a new-found respect for the kindness of advance notice.

There are so many things I regret about my life, but none of those could be changed if I live to be 100. And even with those regrets, I feel fully blessed. My daughters are the most amazing, beautiful, intelligent, loving women I could ever imagine. I have a large circle of fabulous, loving friends. I love my home, I'm living in a community that feels right for me, and every February the garden wakes up and things magically come alive. And in a turn of events I never could have foreseen and after decades of estrangement, my older sister and I now speak on the phone several times a week. It's brought me much joy and has allowed me to reclaim so much of my childhood.

Our world is filled with many tragedies. Children dying in war, young men of color incarcerated at unspeakable rates, women and children sexually assaulted, our food supply contaminated by corporations. The homeless, the lonely, the desperately poor, the victims of genocides that continue endlessly in too many places -- those things are tragedies. Dying of cancer in my 60s is not a tragedy.

Low on blusher

Women who wear makeup are accustomed to that point when the bare spot appears in the middle of the pressed powder. Whether it's eye shadow or face powder or blusher, it's the warning bell that tells us to go buy some more. My blusher has reached that point. Events like this make me wonder how much time I have, and if I can squeeze out enough blusher to last me as long as I continue to care about such things. As of this writing, I've not replaced it.