Weekly Healthcare Series: When Health Care Works -- by Evelette
Cross posted at DKos and Tikkun Daily
My journey starts with the basic advantage of working as an R.N. in a small, rural, non-profit clinic here in New Mexico. Our CEO is a totally enlightened woman who used to run Health care for the Homeless in Albuquerque for about 5 years.
She was instrumental in getting our staff enrolled in a small pilot program for state insurance coverage for low income folks that was quietly rolled out by Bill Richardson last year. It was quiet b/c they were afraid the whole project would be overwhelmed immediately, which it was. The 100,000 slots were filled faster than the paperwork could be printed. I never paid more than $7.00 a pop for 2 surgeries, MRI's, needle biopsies, ultrasounds and home nursing. I Don't think I've even spent $100 so far.
Our CEO is so committed to universal health care that she has a sig line she slaps on every email that goes out of her office:
"I believe health care is a right, not a privilege; that this country can and should be providing health care in its most broad definition to all residents without any condition other than a qualified practitioner determining care is necessary to develop that persons safe passage through their life and into their death."
So that's the point I got to start from. The next advantage I had was that our Medical Director, a brilliant and dedicated General Practice doc had just shepherded his wife through a year long saga with the same breast cancer I was diagnosed with, Ductal Carcinoma in Situ, DCIS. So he had done a lot of research in finding the best breast cancer specialist for his wife.
Within 4 days of my diagnosis, I was meeting with one of the best surgeons in the state, and she is a woman! The first thing she does when we meet is give me a huge hug and lets me know she'll be doing her best for me every step of the way.
This was a good start, b/c something funny happens in your brain when you read a piece of paper that has your name and the word CANCER on the same line. My brain started stuttering and became numb and stupid. I'm medically trained, know the terminology, and still could not get the info to stick in my mind coherently. I must have read that 1st pathology report 30 times before I could squeeze the info out of it. My mind just put up big signs: Danger! Harmful things approaching!! Crime scene!!! Valley of Death coming up on the left! The mind takes it's own sweet time when faced with such a large idea: it can only take small bites and chew grimly.
So I start with excellent medical care and excellent insurance.I cannot imagine having to deal with the financial burdens on top of the diagnosis: Eve + Cancer = the worst thing in the world happening to ME, right now, and they're going to do medically invasive things to a body that has never been "treated" (read invaded) for anything.
My image of my thoughts around this was a fish tank. When you feed the fish those little flakes,they first just float on the surface and then individually start the slow drift down to the bottom. My thoughts were like that: I could tell that some ideas (flakes) were only one quarter or one half of the way to the bottom; all was in free fall and I kept waiting for all the various concepts to settle into something coherent that I could get my head (read fish tank) around.
The first step was a lumpectomy, wherein they go in and excise the growth, hopefully get it all, and then 6 weeks of radiation in case there was a clever cancer cell or two that escaped the knife. They also check the lymph nodes to see if it has moved out of the breast into the lymph system. This is critical b/c if it has moved out into the nodes, it has gotten into your whole system, potentially, and then you have to do chemotherapy, and poison the whole system to make sure it doesn't sneak into your liver or lungs or bones.
Now, 2009 is a very good year to have breast cancer. The advances they've made in difficult procedures are astounding. Even 8 years ago, they would have taken a bunch of nodes during surgery, indiscriminately, and sent it to pathology, wait a few days for the verdict ( positive or negative) nodes and then slam you with the prognosis a few days into your recovery.
Now what they can do is shoot blue radioactive dye into your breast, behind the nipple (ladies, this procedure is not pretty- I will spare you the nitty gritty) about 4 hours before surgery. The dye gradually migrates to the nodes over that period of time, so that once you get to surgery, the surgeon has a way of identifying the first nodes out from the breast. If the "sentinel" (the very first) node is clear, then you can safely assume that any nodes further out will also be clear.
The surgeon looks at your nodes during the surgery because now they are blue, plus are traceable with a little Geiger counter that can measure the radioactivity,and they are visible enough to evaluate if they look "weird". The surgeon takes the sentinel node, sends it to the pathologist right then, and has an answer immediately that tells her whether she has to take a bunch more, all while you're sleeping the peaceful dreams of anesthesia.
This is progress.
I woke up and the surgeon was there to tell me that my nodes were clear. This was HUGE. This meant no chemo. This meant that I was spared the poison.I was delighted in a loopy post-op sort of way.
However the pathology report for the tissue they took was still a few days coming. They look to see that the "margins", the excised area around the growth, are clear, meaning there's a significant area all around the growth that is noncancerous. If, for instance, a couple of the edges bump right into normal tissue, then you remain at high risk: they can't guarantee that a small edge of the cancer isn't still sitting there.
This is what happened with me- I learned about 5 days later that I had to have more surgery, the margins were bad....the mind goes stupid AGAIN.
So my options (more fish-flakes floating around, and the water is definitely getting murky) are : a single mastectomy, (my boobies weren't big enough to handle another excision), with or without reconstruction; a double mastectomy (b/c now the chances for cancer in the other breast have just jumped 50%) with or without reconstruction, or do nothing and hope for the best.
I was surprised at how both my PCP and my surgeon were prepared to deal with a choice of doing nothing. Apparently, this option is exercised often enough that they are very careful to explain clearly the risk involved. For both surgeries, the surgeon's office was reluctant to give me the pain pill RX ahead of time. The explanation was, " well, you might not come in for the surgery".
That never occurred to me. Well maybe when they were about to shoot that blue dye in me, I had the passing thought of bailing out, but not seriously. As an aside, I know of 2 women that opted out at some point in treatment, went a "natural" route and they are both dead now.
So, I have to "choose" the next surgery. At first I'm thinking, this isn't too bad- I'll be getting a boob job, and can get a pair of those "perky" ones I've dreamed of, ever since I saw all those women dancing in those little camisoles all over Woodstock. I start hitting "the Google" to find out what's possible.
Oh boy...talk about shattered hopes. I know enough to know what I'm reading. A double mastectomy with reconstruction is NOT a cakewalk and there are NO guarantees. The healing from reconstruction is very problematic and fraught with complications and continued medical intervention. No way do I want any more medical "intervention". What if I don't have health care down the road when the implant leaks or breaks?, or I'm in Timbuktu?, or I get one of those awful MRSA infections? Nope, I want to go back to my side of medicine where I'm the one GIVING treatment, not the recipient.
The absolutely pragmatic choice I make is a double mastectomy, no reconstruction. This GUARANTEES an end to all the medical messing with me. I do this, and there will be no radiation and no chemo and no more surgery EVER for breast cancer. Now all I have to do is get all the fish flakes settled somehow, enough to start the emotional realization of my future life without breasts... I had about 3 weeks before the next surgery.
One of the best things I did was go out to So Cal and visit with my sister at a beach house she'd rented with her family. This was my swan song to me in my Bikini saying goodbye to being a California girl (born and raised). This was a perfect setting: long walks in the morning with the fog and the constant sound of the waves, letting me sob my heart out in relative privacy, for however long that cry had to last.
I had one very bad morning of absolute despair and was non-stop howling. Then I happen to look up and suddenly see about 3 whales off the shore, heading south in their massive way. I was mesmerized, totally taken out of myself; there was nothing else in the world at that moment than this rare gift of migrating whales.
I suddenly realized that I still had a "place" in this world; a place that was both bigger and smaller than breast cancer.This was the first step in "getting perspective". A crucial reminder of the vastness of the "ten thousand things" (read ZEN) and my home in it all. My thinking got a little better after that.
Another thing I needed was a POSITIVE image for what a double mastectomy would look like, (you might have realized by now that I'm an "images" kind of gal...). I had the great good fortune to find this absolutely beautiful woman who had posted her whole journey through breast cancer with images on the net. She was full of joy and light and had NO BREASTS. I was speechless with wonder as I looked at her pics. This was crucial in my process of accepting my decision; please do take a moment to visit her.
The last piece of my preparation was one I didn't go looking for. It had to do with the incredible and unconditional support and love that was poured into me by everyone in my life, near and far. My workplace made it absolutely clear that I could take as much time as I needed, with pay, b/c everyone had donated some of their paid days off, and if I needed more, they would do that again.
My partner gave me absolute space through my decision making process to figure out what I wanted / needed. Never once did he insert himself or his opinions into my personal fish tank debacle. And never once did I ever feel that having no breasts was ever going to make him stop loving me.
Lastly, something funny happened in my heart that had never happened to me before: I was actually able to BELIEVE that all these people cared deeply about me and wanted to do anything possible to help me. I had never felt less alone in my life. My fish tank was actually an ocean! Who knew?
Obviously, I've not even gotten to the tale of the second surgery, wherein it all becomes manifest. I'm going to leave you here with this 1st installment, promising to return with the 2nd half of the saga in a week or so.
I am currently 4 weeks out from my double mastectomy and feeling better than I had ever imagined. I sincerely hope this is of value to some, especially you women, b/c the current statistics are: 1 in 4 women will deal with breast cancer at some point in their lives.That is an absurd number. We need all the knowledge and experience that we can share to accommodate such a grim reality.