Photo Credit: "Lush Pink Rose with Crystal Center" by Elissaziccardi on Photobucket
A few weeks ago I collapsed at Penn Station, in the throes of a bronchial asthma attack, I thought, and was rushed via ambulance to Bellevue, the nearest hospital. My knowledge of medical facilities being limited, I thought it was a psychiatric hospital. They can tell I'm crazy just by looking at me? But, no, Bellevue is full service; and they had no interest in my therapy history.
You know those horror stories patients tell of lying on a gurney unattended in the ER for hours--and other near death hospital experiences? I was examined immediately, virtually swarmed by a warm, caring, highly professional staff, including a witty doctor who informed me, "You're my biggest mess of the night." The IVs were inserted, pumping blood thinners and allergy drugs into me, before I got to x-ray. It was, as the docs suspected, pulmonary embolism, blood clots in the lungs.
The x-ray also disclosed a suspicious shadow so I was rushed through the admitting process. Within 36 hours, I had undergone a battery of tests and been diagnosed with cancer, in the lymph nodes, breast and rib bones--no surprise by the time the doctors told me about it because, at my request, the technicians showed me on scans and screens.
For the first time in decades, my medical issue wasn't allergies. I have terminal cancer; I am dying, sooner rather than later.
I cannot remember whom I called first--Carolyn or Harry and Shawn, nephew and wife, or Kimmie. But I do remember the person who haunted my dreams that first night. Let me tell you about her...
Years ago and far away from New York City, two very young Moms, one divorced, one separated, shared their secrets over glasses of white wine and cups of herbal tea just as they had done since their children were in nursery school together. The divorced Mom's lover was a distinguished university professor, twenty years her senior; the separated Mom's lover was eleven years her junior, 19, a university student. Their lovers evening time often monitored by Wife and House Mother, the women sometimes went to movies together or took their children to special events and attended lectures at Southern Illinois University...
Small armies of cancer docs showed up at my bedside, including surgeons--and Anna, the "breast fellow"--and chemotherapy specialists. One soulful young man did his best to get me to cry for him. I am saving the tears for those last days? weeks? on the morphine drip. That's the time to cry--not when I can still laugh and live and write. I haven't lost my appetite; I haven't even experienced "unexplained weight loss." Cheese and pate, pasta, red wine and chocolates--and cheeseburgers and nachos--are best consumed without the seasoning of salty tears and the distorted sense of smell created by a stuffy nose.
People who can't be happy without playing handmaid to an emotional meltdown should look for another cancer victim to "support". I won't be manipulated into that.
The Moms--MLFs before the term was popular--heard Elisabeth Kubler-Ross--author of the 1969 classic On Death and Dying and the mother of the hospice movement--and learned about near death experiences ("going into the light" and coming out again) and the five stages of grief: Denial, anger, bargaining, depression and acceptance...
One by one, I got the armies of docs to admit that they could not "cure" me; and the surgeries, chemo and radiation they proposed might prolong my life by a few months--bad ones. I did my research and that reinforced their conclusions. One 2010 British study reported that palliative care actually prolonged the lives of lung cancer patients by three months--three more comfortable months than they would have experienced with aggressive treatment. A recent report in the British Medical Journal on improving prognostication (of life expectancy) in cancer patients pointed out that many people receive treatment up to the end of their lives, giving them no time to prepare for death.
I said No, No and No. In hospitals, they don't know what to do with a woman who says NO to the standard treatment regiment. In fact, they are taken aback by one who questions the process at all.
If you can't cure me, why should I give up the remaining good time I have--Weeks? Months?--to the pain of major surgery, the side effects of chemo? Why can't I keep my body in one piece when sacrificing its parts now is possibly only slightly more effective than turning myself over to a witch doctor? Chant over me, pray over me if you must, but please don't invoke Jesus in my hearing, and don't take away my last precious good moments.
"Don't travel," they told me. Oh, ha.
Neither relationship proved lasting; and the separated Mom married a suitable man, found Jesus and sometimes talked in tongues, a not unusual life re-invention in the Bible Belt--while the divorced Mom had a long affair with a former SDS organizer, a not so much older man, who had better uses for his tongue, but eventually left him and the Midwest for New York City...
On my last morning there, I told the nurse who came in to take blood, "This is the first day of my dying."
"Don't say that," she said. "We don't talk about dying here"--"Here" being a hospital where people die every day. "Promise me you will say this is the first day of the last days of your life."
Within ten years, one Mom would be diagnosed with cancer, but not before it metastasized to her bones. She submitted to every possible treatment, including punishing rounds of chemo. Before she died, she told the other Mom--who had been long out of touch but came "home" for the final visit...
I give the blood taker that. Her wording references the soppy and familiar "Today is the first day of the rest of your life" while slyly skewing the sentiment. Today is the first day of the end of your life may never catch on--but fellow mortals on the conveyor belt toward The End, I ask you: how delusional is that?
Dying is everyone's end game. Deal with it.
"The church people are praying for a miracle, but I want to die. I don't know why they [meaning the dead relatives and friends Kubler-Ross told her to expect] haven't come for me yet."
I checked out of the hospital on a Friday, spent the weekend with my family in New Jersey and headed to the Baltimore area that Monday to see my girls, my two best friends Carolyn and Marilyn. They carried my bag and pampered me. We ate and drank wine and talked and laughed. Along with Marilyn's wonderful husband Rob, we went to a dinner party in celebration of the host's fig tree harvest. These people--artists and witty intellectuals--did not know I was dying; and I got to play a role I thoroughly enjoy: the entertaining, sexually frank and provocative dinner guest.
She died shortly after our last meeting--surrounded by church people still praying for their miracle. Had they known her when she was smitten with the college boy who climbed a tree and crawled into her attic window to make love to her while her children slept on the floor below--they would have been praying for her salvation. Her co-conspirator in those brief days, I remember her as a woman who found her marriage sexually stultifying and, against her Catholic training and the values of her family, refused to let that part of her die in obediance to marriage vows. Beautiful, with the best body ever seen on a Mom in that part of the world, glowing with the love of life, generous and giving especially to the old, the poor, the sick--she found her sexual awakening in the arms of a talented boy.
I hope she didn't lose what she found in that attic when she married again and began talking in tongues. And I wish my last memory of her wasn't of an emaciated woman, wig askew, breathing heavily, wincing in pain, praying for release from the shackles of her once vibrant body. I looked into her eyes and couldn't find who she was, but maybe it was just too late.
Can I stay who I am, at least in spirit, til the end?
I hope so, but dear old friend, in the unlikely event that there is an afterlife, preferably with movies, come get me sooner than they came for you.
[I am determined to die on my own terms as much as possible--and to chronicle that story on SexyPrime. But don't worry. I won't write about it every day, only on Science Tuesdays--and the rest of the time we celebrate sex as usual, with a little help from Kimmie and Lindsey. I want to finish the Sex Wardrobe Basics, the most popular feature on SexyPrime, and get them published as a delightful little book, complete with fashion illustrations and erotic photographs. That, and spending time with the people I love, is my Bucket List.]
Dying, The End Game, Part One: The First Day of the End of My Life
Dying, The End Game, Part Two: I Gave Them Something To Talk About
Dying, The End Game, Part Three: What About Sex?
Dying, The End Game, Part Four: Secrets, Lies & The Relevance of Truth
Dying, The End Game, Part Five: Money
Dying, The End Game, Part Six: A Quickie on Questions People Ask
Dying, the End Game, Part Seven: The Power and Glory of Breasts
Dying, The End Game, Part Eight: Ghosts, Spirits & Totems
Dying, The End Game, Part Nine: Why I Don't Want A Funeral?
Dying, The End Game, Part Ten: In The Wee Small Hours of the Morning
Dying, The End Game, Part Eleven: Are You Partnered? Are You Happy?
Dying, The End Game, Part Twelve: Random Chance & Planned Exits
Dying, The End Game, Part Thirteen: Regrets & The Movies
Dying, The End Game, Quality of Life
Dying, The End Game, Part Fifteen: "How are you?"
copyright 2008-2011, www.sexyprime.typepad.com; PARTIAL reposts only permitted with link back to original article on SexyPrime
Anna, the "breast fellow!" Bwaa ha ha ha! That's ALMOST worth going back to school for. I want to be a "breast fellow," too!
I love that you'll be continuing to celebrate life! I'll be here reading, that's for sure.
xo
Posted by: Kay Kay | September 06, 2011 at 11:36 AM
bravo Susan. my grandmother went through a course of radiation treatment and it caused a heart attack. after that, she said no more, and she'd do it her own way.
i wanna celebrate with you soon - drink on me.
Posted by: Melissa Ulto | September 06, 2011 at 12:58 PM
"Don't say that," she said. "We don't talk about dying here"-- I just recently finished reading Brave New World by Aldous Huxley and I thought of my family members who died of cancer or APlastic Anemia on a morphine drip and the gibberish medical can put a person through. Then I wake up this morning and Tina Marie email leads me here. You say the above. I had put down my sex ed reading and started reading these classics for they seem to be mentioned in the news and media a lot lately as though it were a wake up call and I had been in a deep lie induced sleep from reality. Ahhh Soma...To be woken up to the reality of pleasure and erotic play and divested of the abstinence lie I have fought so long against to only be alienated. You wrote the manual and allowed people like me to know we're okay and not heathen deamons. TY! And here I've been worried about you due to the hurricane.
Posted by: Lynda Belle | September 07, 2011 at 08:37 AM
YOU ARE AN INSPIRATION!
We have never met, but Lorraine Gambert (my mother) forwarded me your link.
Muddling through my divorce (ugh) is like child's play compared to the devastating reality you are facing. Best wishes to you---I look forward to reading more.
Much love,
Christine Gambert McNamara
Posted by: Christine McNamara | September 07, 2011 at 11:49 AM
Thank you.....thank all of you, including the many who have emailed...for your warm and generous expressions of support.
Christine, your mother is an inspiration to me. She is a wonderful woman, strong and resilient, loving and kind.....very smart and wise....and SO MUCH FUN. My criteria for friends is that they MUST be smart and fun.
You will survive the divorce and thrive because you are your mother's daughter.
Love, Susan
Posted by: Susan Crain bakos | September 07, 2011 at 11:59 AM
I am deeply touched by your beautifully written post, heartfelt, real and so courageous. Can I have your permission to post this blog, with a link back to your, on my blog site: www.HealthyBabyBoomersNetwork.com.
I would also like to invtie you for an interview on my blog talk radio show, Healthy Baby Boomers Network. Your spirit is infectious and I would love to share it with others, including myself.
Dr. Erica
Posted by: Dr. Erica Goodstone | September 07, 2011 at 12:26 PM
Oh my. I read you faithfully and wasn't expecting this (any more than you were). Wow. Just wow. Keep writing because your voice on this will be as important to me as all your writing before.
Posted by: FanGirl | September 09, 2011 at 12:11 PM
You are a very wise woman! I only hope that if I were to face something like this I would have the courage to do it as you have done. I am a doc in another country, and i can imagine that keeping the anxiety of colleagues at bay in your situation would be a big job!
I will be keeping reading! I just regret that I am unlikely to meet you, having started to get to know you and respect you. Keep it up
Posted by: gurrumungu | September 13, 2011 at 06:07 AM
I am so glad to read that you choose to live the rest of your life on your terms.
Doctors have their place and so do hospitals.
People have been given three months to live and recovered the natural way.
The diagnosis of cancer can be like a death sentence for some people.
We all have those cells in our bodies at times of out lives.
We have trillions of cells which can perform miracles if we let them with our thinking conscious or unconscious.
Thank you so much for sharing this!
Yorinda
Posted by: Yorinda | September 21, 2011 at 02:40 PM