Photo Credit: "Lips" on Photobucket
"I too was diagnosed with cancer just over a year ago. I didn’t share it with everyone as you so courageously have done, I needed to keep it private until I got over to the other side of it and could say with conviction, ‘don’t write me off yet, I ain’t goin’ nowhere!’"--
A reader who shared her story of diagnosis and treatment in one of several long and thoughtful letters I received this past week. More of her story below.
I have rarely been sick in my life, merely allergic--so the news that I am dying of cancer shocked family, friends, colleagues and readers. (See Part One of Dying, The End Game if you haven't read it.)
"Not you!? I am speechless," a "fan" wrote.
Some called me "brave," "courageous," a "remarkable woman." Inside most of us a hero and a coward co-exist; a generous soul and a petty little person lie down beside each other, the good twin and the bad one. Random chance determines the circumstances that make one rise over the other at the end and shape how we will be remembered.
Others told me their own stories of suffering, both watched from the bedside and personally experienced; and I am in awe of their bravery and courage. That nearly everyone has been supportive of my decision not to pursue treatment for an incurable disease has buoyed my spirits. I am not alone because you are with me.
I am also with those who, having at least some chance of longer term survival, did pursue the difficult course of treatment.
After months and months of mysterious symptoms and agonizing fear, I was finally diagnosed with stage 3 ovarian cancer. After 5 hours of surgery, the doctor got all the massive tumor out, and cut away 4 inches of my colon where the cancer was trying to metastasize. She reattached my colon and left me with 'zero disease visibility', a rare outcome with the best possible prognosis. Advanced ovarian cancer on average returns after 2 years, but I have a shot at better and longer survival.
I've heard from doctors who called me "a wise woman" and "an inspiration." (Read the comments at the end of Part One; two of the doctors wrote publicly.) Some told me that oncologists are the least realistic about a cancer patient's prognosis because they have been "trained to fight," not help someone see that there is no hope.
An internist wrote: "Few people ask the questions of their doctors that you did. They are too timid or in denial or terrified of dying. The doctors tell them what they want to hear: 'We will fight this aggressively.'"
Many of the responses from colleagues and regular readers made me smile, even giggle. They know me well enough to do that.
A friend in Mumbai wrote: "Do not worry, Susan. In the next life you will resolve all family issues and be married to your son."
(NOW I'm worried.)
The sister of my sister sexpert Lou Paget wrote: "I am picturing you right now and you are radiating a scintillating rainbow of colours, predominantly intense pinks. Your calm is amazing."
David Lodge (Lotus Workshop), one of my favorite people in Sex World, said this:
"I was listening to a Shame-Free Zone podcast by Veronica Monte talking to Susie Bright about sex- positive parenting when Veronica said her mother told her--
"Orgasm is God's way of letting us know what’s waiting for us in Heaven."
"You have so much to look forward to in your next journey. Call it the Cosmic Orgasm."
There are a few dissenters, like my niece's friends. She said they asked: Why doesn't she fight the cancer? Someone cited an aunt who was cured of breast cancer. (It is non-Hodgkin lymphoma that spread to bones and breast--another beast--but why let facts get in the way of a good anecdote about a "fighter" who "won?")
Curiously, she added, There have been so many medical advances in our time that my generation has not known people who died of cancer. The difference in our ages is sixteen years, not fifty. How can a group of Midwesterners crashing through their forties not have known anyone who died of cancer?
I encourage them, and you, to do some research. (Breast cancer, for example, is striking women at younger ages; and, yes, people in their forties and younger are dying of cancer right now.) Research, by the way, is not collecting anecdotes from family and friends or scanning The National Inquirer in the supermarket check-out lane. Type into your search engine "Cancer research, 2011", eliminate all results that are not from reputable sources such as The British Medical Journal, American Association for Cancer Research and others of similar high quality.
My beloved Michael (M--the AssMaster, see category on right hand side of SexyPrime), deep into medical science research at the moment, told me that some cancers have been cured as the result of a patient suffering a massive staph infection. He added, "I wouldn't advise that, however, because the most likely result of a massive staph infection would be your hastened death."
John, the manager of my mail service, told me yesterday that he has been researching non-Hodgkin lymphoma and read the articles Michael referenced. I have new respect for John, only in his twenties, because 1. He knows how to research and 2. He isn't afraid to ask me how I'm doing. Some people are. I know they want to ask, Have your symptoms escalated? Are you experiencing pain yet? (No & No, but I will share with you when it happens.) My advice to others who don't want to feel like The Cancer Victim: Volunteer updates in a matter-of-fact tone of voice. Then talk about everything else. I haven't lose interest in the world; surely other people with a bad diagnosis haven't either.
I really want to hear what/how everyone else is doing too.
"I can’t imagine how completely shocking it must have been to go in to the emergency ward for what was assumed to be an asthma attach and leave knowing your time in this life is nearing its end. I don’t blame you one bit for refusing their treatments, Susan. I believe we’re all being held hostage by big pharma and the FDA, forced to endure what amounts to brutal and archaic treatments so they can insure that the millions of people developing cancer every day are forced to seek out some combination of surgery and/or chemo and/or radiation. It’s an ENORMOUSLY lucrative business! (I’ve read and heard many people say that one day we’ll look back upon the current mode of cancer treatments much the same way we look back upon blood letting.) Because there was hope and because I had to make a very quick decision, I went the route of surgery and chemo. So far I’ve been lucky. It was brutal and I’m still suffering side effects that are painful and may never go away. But I do not complain (especially if they allow me to continue taking my small regimen of opioid pain killers...but that’s another whole story! You know...oooh, it might get you hooked ‘cause it does feel good for a few minutes after taking, and you know anything that makes you feel good can’t be right!) I have my life back and the chance to continue living and making the most of what time I have left in this place."
I hope this very beautiful woman has a lot of good time left.
Only the active proponents of The Good Cry annoy me. They lurk in wait, hoping to catch The Cancer Victim as the pain kicks in or a fearful moment engulfs her like fog. Most are not above manipulating an emotional event by reminding Victim of what she will never see: her grandchildren grow up, the next season of "Mad Men," Christmas and Lord & Taylor's shoe sales or what she will never experience again, like erect penises and French chocolates. Surely they immersed themselves in the coverage of 9/11, The Tenth Anniversary, featuring children's emotional letters to dead fathers they never knew and photographs of the sobbing. (Sobbing in public ten years after? A discrete tear running down the cheek, yes, but sobs? Really?) Why does this culture so value the public display of emotion--because it covers up the private lack of real feeling?
I've never subscribed to the theory of The Good Cry. What's good about it? Crying always makes me feel worse; and if you love me, you won't try to make me cry. If I had to choose between "sharing" a cry and giving someone a good dressing down, I would utilize one of my best skills, the sharp tongue, and filet the tear monger.
Two of my favorite responses came from Tinamarie Bernard: "You rock. I'm here." and from Dr. Sonia Borg, my sister Quiver author: "I am honored to share this journey, this game, with you and look forward to more Sexy Prime. You're beautiful. Please let me know how I can support you.
Read my interviews with Sonia, the most popular Q/As I've ever done. She rocks.
THE WICKED TONGUE GAME--7 Questions with Dr. Sonia Borg
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, 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
I know those two twins. It can be hard to accept that it is indeed the circumstances around us that tend to ignite one or the other. It's the stuff of my nightmares to think that the coward might flare up and cost me my life or that of someone I love.
Luckily, she seems to stay locked away in the dark. I don't want her to get too used to seeing the light of day!
Posted by: Kay Kay | September 14, 2011 at 09:32 AM
You are part of a very important part of our life Susan, there will be a Susan void when you're gone. But for now, you're still our Susan and we still can enjoy you and support you. Don't be afraid to ask for anything because you'll have an army of volunteers. You still want to be meaningful to us, but Im sure I speak on behalf of SexyPrime readers that we want to be meaningful to you. Can we do anything on a large scale to help you? We appreciate all your eloquent and life enhancing advice. We've got to love you Suse! You're a special friend. x you mightnt want to cry, each to their own but tears rolled down my face when I just caught up with my emails and saw dying attached to you. I want to hug you. I'll take some of you with me, when Im feeling prudish, I'll think of you.
Posted by: Sally | September 19, 2011 at 03:13 PM
Thank you so much, Sally. I have been asking myself if I will leave anything lasting or important behind--and you make me feel that possibly I will. Please do take some of me with you when you're feeling "prudish." What better way to be remembered?
I have not been shy about accepting lunch and dinner invitations from people who want to take me out. I wouldn't turn down French chocolates either.
Love, S
Posted by: Susan Crain Bakos | September 19, 2011 at 03:40 PM
To all of Aunt Susan's fans & friends:
On October 7th I will have been Auntie Susan's neice for 16 years....16 years filled with wine, loss of family members, chocolate, discussions that were of polar opposite opinions, & so many, many more memories. Some are wonderful & some are depressing. I prefer the wonderful!
One of you talked about keeping a piece of her for when you are feeling prudish. That, my dear lady, is exactly what she wants! That is what we, her family here in Illinois, will be doing as well. For me it will be knowing that I am not alone! As a child I was exposed to people of all kinds: hippies, freaks (yes there is a difference between a hippy & a freak), gays, lesbians, black, Vietnamese, Korean, well...you get the idea. I see the person not the shell because in the end the shell is left behind while the soul, the true essence of a person, lives for eternity! Susan has always been of the same thinking & thank God or Mother Earth she has always "smacked" me when I would stray from said path & after a long, emotional battle, I have come out just as I was meant to be...a human with love, faith, & most important of all, an open mind!
But, to give you all an idea of just how truly wonderful she is, let me tell you about "Spa Days." I am sure this conjures up ideas of going to an exclusive spa, sipping champagne, relaxing back rubs, with a mani & pedi to top it off. Well you'd be totally off the mark. Spa days were spent with my little Iva, her great neice, a pan of soapy water, a pan of clean water, & almost every dish or hand towel Iva could con out of Mawmaw. Why? Because the "spas" were for Iva's 15 or so Barbie's, Princess dolls, & whatever else Iva wanted to wash. Then they'd do their hair & lie them in the sun to dry & relax. I would come to get Iva & the smiles & giggles they were sharing were worth more than money could buy! You see not only does she give great sex advise she gives a child, my child, unconditiona love!
In closing I hope you will all look back & realize it wasn't just sex advice she was doling out but her undying love for her fellow men & women by showing them how to love themselves, their bodies, & the pleasures to be found by sharing their body! If she has helped just one person (& I know there are thousands of you out there in reality) then she has made her mark on the world. Something we should all strive to do!
As for me? I'm still making my mark with one dam good lady as my inspiration!!
Love ya' Aunt Susan,
Shawn
Posted by: shawn shepherd | September 19, 2011 at 11:01 PM
Ah, Barbie spa days!
We had them at my late sister Ellen's, Iva's grandmother........
We should put up one of the photos of the Barbies in their paper towel spa robes on SexyPrime...
I hated it when the girls outgrew Barbies.
Posted by: Susan Crain Bakos | September 20, 2011 at 05:37 AM
You are a remarkable woman and writer. I have been selling your books for years and can't believe we have never met. I also work to heal the sexual pain on the planet at www.goodcleanlove.com and write a popular love/sex blog called making love sustainable. I would be honored to interview you if you have the strength. Your clarity and ability to articulate is deeply inspiring.
Thanks for all of your work.
Wendy
Posted by: Wendy Strgar | November 03, 2011 at 11:34 PM