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.
