Breast Cancer, Zen and Me
Crossposted on DailyKos and Tikkun Daily, by Evelette.
This is the second part of
my story about surviving Breast Cancer.
There is a slightly surreal quality of thinking that happens when one walks the halls of cancer. One is asked to consider options that are basically outside normal consideration, and come down to making choices that are simply variations on levels of suffering...
The bottom line is DEATH and you get to work up from there.
As I said before, I was incredibly lucky to avoid the devastation of chemotherapy and/or radiation as part of my treatment. I only had to struggle with a ridiculous question of whether I would be "content" with one breast or no breasts. My immediate thoughts were that one breast would only remind me of NOT having the other one, plus knowing that the remaining breast would still have to be screened with vigilance for the rest of my life (50% increased chance for a recurrence in the remaining breast); I make the (obvious to me) choice of a double mastectomy.
I need to take a slight detour here to explain the background in my way of thinking.
I was 23 years old when I stumbled into the practice of Zen Buddhism. I say "stumbled" because I was not looking for a "teacher" or on a "spiritual journey". No, I was haphazardly working out my psychological demons and looking for love in all the wrong places. My boyfriend at that time wanted to move into the Santa Fe Zen Center, and I wanted to be with him, so it was a done deal. I had NO idea what I was getting in to.
I'll start with the Four Noble Truths.
The first Noble Truth:
ALL LIFE IS SUFFERING.
Whew! All right then- let's just get it all clear and out in the open , right from the start,with no soft, soothing platitudes.
At 23 years old, I found this rather disheartening, depressing and totally dry. Thirty years later, it all seems fairly accurate, in the long view, and even somewhat liberating. But I digress.
There are numerous stories in Zen about attaining enlightenment through practicing non- attachment to the human, or physical, world. The one that stuck with me from all those years ago was about the beautiful female novice who was determined to achieve great insight and felt that her beauty (and subsequent attachment to her great beauty) were impediments to this goal. So she goes and completely disfigures her face with acid (I thought, what is wrong with these people ?!!) and then goes on to attain great enlightenment....or the novice who chopped off his arm and then achieved great enlightenment.
This is the "flavor" of the teachings and it had absolutely NO resonance for me. In fact, I thought it was all totally over the top, and didn't pay much mind to it because I was there for the boyfriend.
A few months go by and the boyfriend decides I'm a real piece of work, and goes and finds a replacement...and moves her into the Zen Center.
So now I'm homeless, penniless AND emotionally devastated. I'm shuttled off to live in the affiliated Zen monastery in the mountains of Jemez Springs, NM because I have no other options in the moment.
I am definitely NOT on a spiritual journey.
But I do start the Zen practice with a deep grip on the concept of "impermanence".
Through the next thirty years I've stayed with this practice basically because the act of meditating has filled empty black holes in me that no other activity (or drug) could fill.
Did I actively embrace the teachings? Not really. I just wanted to feel better. Did I begin to understand how attachment causes suffering? Oh yes...
So when I was diagnosed with breast cancer, I had some ability to stand back and see that I was in the middle of one of those "great teaching" moments, wherein I had the opportunity to truly realize the practice of non-attachment: I'm a woman and I'm going to have to let go of one of the biggest symbols of "womanhood". This was the frame I tried to operate from.
All this spiritual ground to stand on was helpful in the big picture, but the nitty- gritty of the treatment remained full of a sense of inner conflict, because of the absurdity of the choices. When you enter the realm of Cancer, all things become relative: I'm incredibly grateful to have ONLY had to lose my breasts, no chemo, no radiation. This a very reasonable view in the halls of death.
My body, however, my very sentience, recoils from seeing the sacrifice as "reasonable". This is against everything my body stands for, by God!
So I'm sitting in the waiting room early in the morning before the 2nd surgery. I'm trying to get my mind to accommodate the fact that I will be breastless within 4 hours...just a simple fact that my mind keeps spitting back at me like a willful child: this is not right!
I'm still trying to spoon feed my decision to my terrified inner being, and she's screaming her head off:
You CHOSE to do this!! Who the F*&% do you think you are to do this to me, this is blind faith, this is NOT what I want... I do NOT want to suffer!!! We're talking NO BREASTS here, Miss Big- Non Attachment, are you sure you know what you're doing?
But that train has left the station, and I'm just trying to keep me in the waiting room while they are sharpening their knives in the back room (she's getting pretty hysterical).
It's a relief when they finally call me - off to the firing squad I go. I have a lot of practice in accepting the inevitable.
The double mastectomy was done on an outpatient basis. I was given the option of an overnight stay in the hospital, but this wasn't recommended because the chances for an infection were greater if I did that. This makes sense because there are many "super" bugs loose in a hospital. As a nurse, I know how many different hospital staff come into contact with a single patient: there are 3 shifts of nurses, nursing aides and even housekeeping, all charging around the hospital, and then coming in to take care of little old non-infected me. So I "chose" the outpatient setting. (Cancer-speak).
This has some limitations, mostly that the support staff (anesthesiologists) cannot be accessed before surgery; you just get the one that is available in that time slot. This means you have very little time to express your concerns. In my case, the big issue was nausea , as I had come out of the first surgery sicker than a dog - I was throwing up for 3 days. I had discussed this with my surgeon and she had two good suggestions: get a Scopolamine patch, and talk to the next anesthesiologist right before surgery and ask him to "alter" the mix.
Scopolamine is an anticholinergic medicine and is used to relieve nausea, vomiting, and dizziness associated with motion sickness and recovery from anesthesia and surgery. I have a very "nervous" stomach, which can get upset if one even looks at me wrong (very slight exaggeration), and have always become seasick and carsick. This was an excellent idea. I got the RX the next day.
I also talked to my PCP about anesthesia and he explained that there is a broad array of meds that they use, and these can easily be adjusted so that they use less of the nausea-causing mix. I had told the anesthesiologist before the first surgery about my propensities. He nodded sagely, and I woke up from that as nauseated as I'd ever been. So I was not so sure I would be able to get through to this new one.
For this second surgery I got a lovely "boy" of an anesthesiologist who looked like he had just walked out of the cornfields of Iowa, complete with a cowlick. HOWEVER, he listened to me, and my fears, and said, "Sure, no problem. We'll just give you more morphine through the IV, and less gas. You'll just wake up happy."
I thought, this is a problem?
So, he reaches over and puts the first dose of his magic juices into my I.V. and blessedly, all voices are silenced. All choices are made .
I wake up muddled, am helped to a wheelchair, rolled out to the car, and driven to the home of a dear woman friend in town (I live 120 miles out) who will watch over me for the next few days.
I HAVE NO NAUSEA! I'm actually pretty comfortable...and am actively contemplating starting a torrid love affair with that sweet young anesthesiologist from Iowa, as soon as I'm better. Morphine is a fine, fine drug.
With this surgery, they insert 2 drains that you go home with, and are then removed by the doc at your post-op visit if the total daily drainage is less than 30cc. So you have these 2 tubes running out from either side of your chest, draining into 2 small bulbs that look like plastic hand grenades. You have to empty them every 8 hours and record the drainage.
I was also visited every day, for 4 days, by a Home Health nurse (part of the coverage) who checked "the site" and redressed it. This nurse was terrific: cheerful, competent and totally unfazed when she removed the dressing to change it. I know this because I was watching her face like my life depended on it. She examines me, she calmly surveys my chest and says, "This looks good". Great - I'm taking her at her word. There is no way my mind can digest anything bigger than her professional opinion. My thoughts are on hold until I'm good and ready.
I get to rest peacefully, with no nausea, slightly loopy with my great friend Morphine, until the post-op visit 5 days later.
Now this is the visit where the surgeon will tell me everything the pathologist found, because there is STILL a chance that something MORE was discovered. I, however, have happily subverted this knowledge deep, deep in my subconscious and blithely trundle in to see my surgeon, feeling vaguely unsettled. She comes in, hugs me, checks my drainage record, takes a good look at my "aura" and says, you haven't heard the good news yet? I'm still pretty muddled and stumble over the concept of "good news"...good news...my mind doesn't know what that means anymore. I've been living in the world of relativity.
"Yes," she says, "We got it all, no surprises...you're all done. I just want to see you one more time, in a week to check the incisions. YOU ARE DONE."
Oh my god, oh my god... I get out to the car and start to tell my partner that I'm done, no more anything, but instead, I start sobbing like I've never sobbed before. Great gobs of black fear start erupting up and out of me - huge buckets of crying and crying...I can't talk because my whole being is releasing the terror I've been living with for the last 10 weeks. I can't get a grip, and I don't want to: I want to cry until every ounce of all the awfulness is out of me. I want to start my new life....and I get to do that! I'm home free!
I didn't really stop crying for the next several days. The relief was so huge, it just kept rolling over me, again and again. It's impossible to fathom how much stress one's mind can take, and still function. I never quite understood what I was carrying until it was over.
So, in this new euphoria, I get home, open my shirt and take a good long look...this is not bad, ...in fact, this is totally O.K. My "nursing" brain kicks in and I actually admire my surgeon's handiwork. It is all good, because now I have no breast cancer and never will again. I don't have to do chemo, no radiation...I just get to get on with my life. More crying.
I've seen and heard many stories of people's individual cancer battles. When I first got my diagnosis, I got a slew of calls from friends, very concerned. What they all said, in some form, was: "Wow-last time I heard about a friend getting cancer, they were dead before I knew it". I could say the same.
I am the poster child for EARLY DETECTION. So much money has been poured into a "CURE" for cancer, and only a relatively minuscule amount for early screening. Every woman I know makes "the face" when we talk about mammograms. It turns out that the best screening tool we have for breast cancer is an MRI, but those cost 2,000-3,000 dollars a pop. So we all go and get the bejesus squeezed out of our breasts once a year. I encourage all of you to keep doing this.
So now, finally, the medical community is placing more emphasis on early detection, because the statistics show this is the one consistently effective way to "win" the war on cancer. There has always been a lot of money involved in finding "The Cure", and I believe this approach is futile.
Until we really explore why there has been such a huge jump in the incidence of many cancers; until we start looking at the degradation of our environment and our food supply; until we acknowledge the level of poisons we come into contact with every day, we will not be able to effectively deal with the cancer "crisis".
I'll leave you with an image that I had: if every woman in this country who has survived breast cancer was to march into Washington DC, stand in front of the White house and remove their shirts as one body, I think all those prudish gents would take notice. I would hope the shock value alone would get them thinking. Nobody would arrest a slew of mutilated topless women, would they? Ladies, I believe we have some power here.
I would do it in a heartbeat.
Thank you one and all for your time. I sincerely hope that there is even just one woman out there that will benefit from this story. My heart and thoughts go with you.