Maria is a very quiet woman. Una mujer muy tranquila.
I
have never heard her complain. Not once. Not when I examined the drain
left in the place where her left breast had once been, not when her
eyebrows disappeared, not when her skin sloughed off in layers under the
blistering burn of radiation. Never.
Most questions I
ask her, even open-ended ones, are answered with a shy nod or a few
soft-spoken words. She has a pursed smile and an awkward shrug of both
her shoulders when she is uncomfortable. When I ask her how she is
doing, she always has the same response, "Bien, doctora". To call her understated is an understatement itself.
The
day I met her--almost five years ago now--is an indelible memory-- one
that will be part of my physician-consciousness forever. Maria walked
into the residency training clinic where I was literally pretending to
be a doctor and told one of the front office workers she needed an
appointment. She was having "a breast problem". An astute receptionist
picked up on the understated urgency in her face and stuck her in an
opening in my schedule that afternoon. Maria waited for a couple of
hours before she was finally roomed, and when I knocked on the door, I
had little idea of what was on the other side.
After I introduced myself, Maria told me that she had un problema
with her breast that she had been ignoring. She needed help. Her
Spanish was a little challenging to understand, and as such, I wasn't
quite certain exactly what she was trying to tell me. But when Maria
lifted her shirt, it was clear to me that the "breast problem" was not
something minor. The Spanish no longer mattered.
Breast
cancer. Visible breast cancer. A terrible oozing mess of abnormal
tissue, red and dimpled and irritated and just about the ugliest site
you can imagine. Cancer that had grown from a seed much deeper in her
left breast, enlarged slowly over time (probably years), and
eventually eaten from its origins up through her skin-- until she
could ignore it no longer. Cancer looks just like you might imagine
cancer would look like-- hideous. Undeniably gross.
These are the reasons I imagine Maria ignored her breast cancer.
Initially, she didn't know what it could be.
After
all, most of us haven't been to medical school. We can convince
ourselves in the middle of the night that we have foot cancer only to
discover with the sunrise that it's just a blister on our foot. Most of
us also delay seeking treatment-- I am going on eight weeks of a tooth
ache and still have managed to avoid making myself a dentist appointment
to evaluate that ache.
She was taking care of her family and ignored her own needs in the context of her family's needs
After
all, that's what plenty of mothers do on most days of the week-- you
know who you are: you're the mama that should really work today out but
instead you go to the grocery store to stock up on lunch materials for
your kids. You should go get your pap smear but it's lower down on the
priority list than taking Junior to soccer practice or to library
reading time. You have been meaning to pick yourself up a few new pair
of undies but always find yourself in the kids section of the store
checking out the clearance items rather than in the hot mama sexy
lingerie section.
Once it started to become more clear, she got scared.
Fear
is a huge barrier for all of us. It's hard to understand the immense
power of fear. I was speaking to a local breast surgeon last week, and
she actually said "I liken women with open breast cancer tumors to
situations where people need to drop children off in safe drop zones, no
questions asked. It just seems to get harder and harder for women to
access care as the cancer gets grosser and more obvious. I dream of
having a sign on my door that says, 'Please bring your horrible tumor
here. I promise I won't ask why you didn't come sooner."
She didn't speak any English.
When is the last
time you got on the phone with some bureaucratic agency (think DMV or
your own dear health insurance company) to try to make yourself an appointment or
clarify an oblique notice you got in the mail? You were probably on
hold forever or stuck in some crazy bramble of phone-tree hell. Just
imagine doing that in another language. Virtually impossible.
She had no health insurance
Fear
of a diagnosis is one thing, fear of a medical bill is an entirely
other beast. As Covered California continues to take hold here, I am
happy to see some people having access to insurance for the first time
in years (or even ever), but undocumented immigrants are completely
ignored in our new legislation. Hopefully, there will be political will
in the coming years to change that (see more here). Thankfully, in
California, we have a wonderful state-based program called "Every Woman Counts",
also known as the Cancer Detection Program (CDP) and its sister program
Cancer Treatment Program (CTP). Both of these wonderful safety net
programs were essential in getting Maria expedited diagnosis and care.
Thank goodness for our safety net! I really hope everyone knows how
important it is that there are programs in place. Please don't disregard
the power of the safety net.
***
I
am happy to report that it has been over four years since Maria's
diagnosis, and though she went through a lot during that first year, she is currently cancer free. She continues to do well
physically and emotionally. She still never complains.
Our
health care system is pretty ridiculous,
even for well-educated, English-speaking, documented citizens with
excellent top-of-the-mark health insurance coverage. It's scary, often
overwhelming, difficult to navigate, and generally not user-friendly.
And yet, there are some amazing gems that enable providers like myself
to continue doing the work we do. Every Woman Counts is one of those
gems-- designed to offer appropriate screening AND treatment for
vulnerable populations. It is funded by a combination of federal funds and augmented California tobacco taxes. Woo hoo!
It's awesome for
me to discover that there are similar such cancer detection and
treatment programs available in all 50 states (see link here).
It's administered differently in every state, but the CDC provides matching funds and support for these programs. Thank goodness they exist! But, unfortunately, this program are
limited to specific diseases, namely breast and cervical cancer.
Now
with our new health care legislation, more gaps are being closed, but there is still much work to be done. Don't you think the next best step is to figure out a way to provide
similarly excellent care for all people in our country? And not just
for their breasts and their cervices, but perhaps also for their migraines, diabetes,
depression, heart disease, and even ingrown toenails.
I do.
Additional references:
http://www.cancer.org/healthy/findcancerearly/womenshealth/earlydetectionofspecificcancers/nbccedp
http://healthpolicy.ucla.edu/publications/Documents/PDF/undocumentedreport-aug2013.pdf
http://www.huffingtonpost.com/2014/01/28/undocumented-immigrants-health-care_n_4679348.html
Beautiful piece, Vero! It is nice to read about something gone right in this health care "system" of ours...
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