Celebration of Life

Sunday Beth Israel Deaconess Medical Center put on an event for cancer survivors named Celebration of Life.  A couple of blogs ago I shared with you an article I wrote for the book of essays they print each year.  This year was the 20^th Celebration of Life, and they put together a closing panel consisting of both new cancer survivors and 2 that had spoken at the first Celebration of Life.  I was privileged to be one of the newbies on that panel.  There were five of us, and I asked if the others could share electronic versions of their talks.  I present them here in sequence.  The 5^th speaker, Jeff Gallahue spoke extemporaneously from notes, so he did not have anything to send.  I recall 2 things from his talk: First he and his wife had created a foundation, WeBeatCancer.org.  They raised over 2 million dollars, and they are using the money to solve many mundane problems in the services available to cancer patients (such as uncomfortable chairs).  The other was his exhortation at the end: instead of saying “Have a good day”, he suggests saying, “Make it a good day.” 

Here are the other four:

Britt Lee:

I am Britt Lee, and I am thrilled to be here with my ONE YEAR of hair. Like Dr. Schnipper and Hester, my breast cancer was something my husband and I knew quite a bit about… but hadn’t experienced as a personal nightmare. My husband is Bernie Lee. Maybe there a quite a few of you out there who know him quite well. Benie is the Acting Chief of Plastic Surgery at the Beth Israel Hospital, and started offering DIEP and other forms of reconstruction to patients with breast cancer a decade ago. So, when my age-40-first-ever-mammogram wasn’t normal, I found out from my husband. He called me from the OR and was looking at it with Dr. Mary Jane Houlihan (who was also holding him up). Like Hester, I chose to stay “within the family” for my treatment. And although this had many perks, it meant I had to stand naked and scared in front of people I had known for years.

Dr. Schnipper said, quite eloquently, this morning: “…the body heals, but the spirit takes a more undulating course.” How many of us expected ourselves—or had others expect us—to return to our pre-Cancer normal? But for me, and I suppose for most of you, that girl is gone. That sounds sadder than it is. Turns out my short hair is fabulous and this new girl still loves her Prosecco and child-free events in expensive shoes. I’m still me… just with more of that stop-and-sniff-the-flowers stuff.

Like Hester, I’ve been rather public about my Cancer; and like thousands of other women, I blog about it (sometimes much to the collective groanings of my family members). But as Hester said regarding talking about this or not: indeed, how can I not? Honestly, I can’t shut up about it.

So this is something I wrote a few months after chemo ended. My hair was too short, I felt sad and angry, and the only thing that helped… was Hester.

A few people have asked if I’m going to stop writing now that it’s “all over.” Sure. Will somebody please let me know when it’s “all over?” Unfortunately, this crap sorority demands lifetime membership. Heaven help you if you don’t like pink, or blabby, sweaty women with fake boobs. Even our quieter, more elegant members can still get dragged into the secret handshake: a hug from a bald stranger. Before I had hair, a fellow “sister” stopped me at the florist. I was otherwise minding my own, hatted business when she sidled up to me and shared:

“Look!” she said, pulling at her cute bob. “When I was bald, a woman came up to me and showed me her long hair two years after treatment. I wanted to do the same for you.”

Very quickly I went from sniffing peonies to sniffly gratitude. So as the patina of chemo remains on my visage, it’s not “over.” Unless I can stifle the need to reassure some future, hairless lady with my own chin-length proof of survival, it’s not “over.” And until some miraculous drug is invented that reduces breast cancer recurrence to zero, it’s not “over.” For the one-in-eight of us, it’s never “over.”

Truthfully, I’m a bit surprised that I still have so much to say. I’m all at once anxious, irritated, and grateful about all sorts of things that don’t include my still-too-short hair. In order to make sense of this post-treatment period, I read Hester Hill Schnipper’s After Breast Cancer cover-to-cover and have been roosting in self-satisfied, snarky, you-just-don’t-get-it peace ever since. Beware Women Beyond Treatment. With our post-traumatic stress, and Joan-of-Arc hair, we’re a bitchy bunch of tamoxifen-toting veterans who can find fault with almost anything you say. Yes I’m happy to have hair. No, I would never choose this haircut voluntarily. No, I’m not going to keep it gray (I’m 40, not 80). And no, I don’t care if alcohol/non-organic food/the microwave/white pasta/sugar/negative energy causes Cancer. I’ve already given up plenty this year. Just today I found a whole slew of blogging women who one, five, ten years after The Diagnosis are still writing travelogues about Life in Cancerland. And although right now I can relate to their frustrations and fears, I hope that a decade from now I’m less annoyed by people who don’t follow the fragile rules of etiquette in this godforsaken town.

But with my taxes-paid-up citizenship here in Pink Ribbonville, I feel qualified to share a few guidelines to prevent riling up the natives. Obviously, attempting to convince any woman without hair and breasts that “it’s over” doesn’t fly. And I’m not using “chemo-brain” as an excuse. I used to be smarter and more remember-y. Now I’m forgetful and distracted (and sad about it). Although exposure to life threatening illness has made me even less tolerant of pettiness, I’m not less willing to commiserate with you over the difficulty of finding a good plumber. Don’t spare me opportunities to be a friend (even if chemo brain will occasionally make me forget to return your call). And I want to hear any Cancer story that ends well. But maybe don’t compare me to your Auntie Mable who found her lump at age 75. Although it’s sucky bad luck for all of us, Auntie Mable got to live an extra 35 years without this hanging over her. I reserve the right to my own amount of incomparable unfairness.

Although those of us in this alternate world of “survival” are forever changed, I don’t actually plan to blog about it for the next decade. And once I have a more reasonable amount of hair, I can answer any “how are you?” with deliciously trite answers requiring no explanations at all. I could also take the advice of my 8-year-old son Teddy who said, “Why are you reading about breast cancer? You don’t have it anymore.”

Sandy Golding :

I am not supposed to be here! According to statistics for Stage 3A Lung Cancer (20 years ago) I had a 50-50 chance for survival at all!

It was 20 years ago that I ADDRESSED the first assembled group for Celebration of Life, and here I AM, again!

I found an anonymous quote on line recently that stated;

Yesterday is a Memory

Tomorrow is a Mystery,

and TODAY is a GIFT, which is why it is called THE PRESENT!

I have received a present, a play on words, perhaps, but I DO feel that I have been given the GIFT OF LIFE!

Yet, I have to share with you today, that the shock of learning that as a non-smoker, whose husband did not smoke, I had Lung Cancer, was overwhelming in many ways.  The word CANCER in those days was spoken in hushed tones, for it meant the DEATH Knell for certain.  I was certain that is what it meant for me, when I was first told "The cells were malignant", by the surgeon who had taken the lung biopsy.  A friend had recently passed away from lung Cancer, so my fate seemed sealed as well.

The retirement from teaching after 24 years was about to take place that June, and all the plans my husband and I HAD LOOKED FORWARD TO IN OUR RETIREMENT, suddenly had to be put on HOLD, if they were able to even happen.

Something else happened.   I became almost MUTE.   I was unable to ask questions of my Doctors. Everything was a BLUR...Fortunately, my husband was my advocate, when I COULD NOT FIND THE WORDS, PARTLY FROM FEAR OF LEARNING THE WORST, and then BLANKING out what was going to happen.

Sometimes I resented his "taking charge" but yet, I was unable to do so.

Then there were all the protocols to be followed in the many weeks to follow.  The Chemotherapy(with nausea which caused me to lose 20 pounds), the surgery, more chemo, radiation, the final indignity of losing my hair, the removal of my left lung, along with a rib , the overwhelming fatigue for ages, the inability to walk and talk at the same time(still happens) the loss of my singing voice, a lingering cough and occasional raspiness, all these are yesterday's MEMORY.

Tomorrow is a MYSTERY as the quote goes, so I cannot predict the next years.  

Let me therefore, address the PRESENT.  Or rather what has taken place in the 20 years, since my first acknowledgement of being a survivor, of having been given a Gift.

My husband and I REALIZED WHAT WERE WE WAITING FOR?  So we embarked on many travels.  We covered the seven continents in these years.  I've been on an elephant ride in Thailand, and another in India, where I WEPT, when I saw the TAJ MAHAL, an edifice to a lost love.  I've been greeted by "chattering" penguins in their tuxedo looking furs in Antarctica, and have flown over glaciers in Alaska, marveling at nature's gifts.

I've been on Safari in Southern Africa, and have observed a real cycle of life, when wild dogs chased an impala to a waterspot, where it was met by crocodiles at the opposite end, pounced upon by lions, and leopard hiding in the bush, devoured with hyena standing by ready for its share and then the vultures hovering above ready to complete the slaughter and finish the bones.

I've walked on the great wall of China, and seen its buried stone soldier cemetery.  I heard opera in Vienna, seen the Terezin Model town from which thousands were sent to their deaths.  I've been from the top of the Eiffel Tower, to the underground bunkers on the NORMANDIE beaches.  There are other sites, and other cities to name.

The significant thing is my husband and I "SEIZED THE DAY."  Carpe Deum was our dictum, and still is.

Closer to home.  I revel in the academic and athletic accomplishments of my children and grandchildren.  I have been so privileged to watch them grow up, when I never thought I would.   To celebrate my 80th birthday two and a half years ago, we all celebrated with a holiday week-end together in Florida.  

How to say "Thank you" for the GIFT of years?

I do THANK HEAVEN each day.

Volunteering in Hem/Onc for 19 years helped me "pay back" by encouraging others, as I HAD BEEN ENCOURAGED BY the volunteers.  Patient to PATIENT, Heart to HEART, STARTED BY Hester Hill, who gave me HOPE, when I was at my lowest point, Dr. Schnipper who has been there for me for these 20 years, Dr. Pastor who recognized my cough was more than Bronchitis, Dr. Rabkin, who helped me in those difficult days, Nurse PAULA and the other nurses who always came in with a kind word, and a cheerful demeanor.

My family one and all who were there from the start in every way, from rides, to meals, to books, and notes, to the close to 200 folks who sent flowers, cards, and offered assistance.  To the youngster who sent me a nickel, which I COULD KEEP if I GOT WELL, AND the crossing guard at school who prayed every week for me.  I was surrounded by love, AND I knew it throughout, and I did not want to let them down.

I find I thrill to a beautiful sunset on the ocean or a sunrise on a lake.  A garden or a beautiful plant has been the source of pleasure as I try to paint with acrylic or water color( a skill I began 20 years ago).

My datebook is jam packed with birthdays, anniversaries, occasions I want to recognize, as others remembered me.

In our new retirement home, my husband AND I try to recognize the newcomers and welcome them as they greeted and accepted us.  Life is filled with lectures, concerts, Bridge lessons, books to read, Zumba, Tai Chi, Yoga, exercises of all sorts, and opportunities to help those less fortunate in their mental and physical abilities.

I wish I had found this quote 20 years ago, to end my speech, but I PRESENT it to you now from Mark Twain:

20 years from now you will be more disappointed by the things you didn't do than by the ones you did do.  So---throw off the bowlines, Sail away from the Safe harbor.  Catch the winds in your sails.

EXPLORE  Dream  Discover!

Thank you.

Elaine Beilin:

On April 6, 1992, I walked out the front door of the Beth Israel Hospital.   It had been almost exactly a month since I’d walked in.   In March, I had started treatment under a protocol of high dose chemotherapy with an autologous bone marrow transplant.  The idea behind this treatment was to administer a large enough dose of chemicals to kill everything in its path— most importantly, any microscopic remnant of tumor that might remain after the standard chemotherapy I had received for the stage 4 ovarian cancer that had been diagnosed in June, 1991.  (Six years earlier, in 1985, I had been treated with lumpectomy, radiation, and chemotherapy for breast cancer.) What would also be wiped out by the high dose chemotherapy were bone marrow and epithelial cells, so my own bone marrow, harvested earlier, would then be returned to me.   

Medically, preparation for that month in the hospital had included harvesting my bone marrow at the Dana-Farber.  As parents here will understand, what seemed much more overwhelming at the time was preparing our two daughters (aged 12 and 9) to carry on with their lives at a time when uncertainty and fear were their --and our-- most natural response.   Although we were blessed with friends who organized carpools, babysitting, and dinners—  it wasn’t until the hospitalization month itself that my husband and daughters would face the strains of daily life with Mum in hospital.

On March 5, 1992, I walked into that hospital room, changed into the blue johnny, and looking at my face in the bathroom mirror, said, “I hope this story turns out well.”    That’s just what an English teacher would say, don’t you think?

The hospital room faced northeast, but for the next two weeks, as the treatment took its course, I didn’t look out the window much.

I set this scene for you, because I want to turn to some of the reasons why I’m telling this story now.

I’m here telling it, of course, because I received life-saving treatment from the team of Beth Israel doctors and nurses, especially the great Dr. Lowell Schnipper, who has been my doctor since 1985. 

I also went into that hospital room with the things that make my heart glad.  Every day, I said to myself, “I’m Hannah and Rachel’s mother.”  Every day, I thought about the people I love.  Every day, I listened to Pavarotti sing “Nessun dorma” with that high B “Vincero”---I will conquer.   Every day I meditated on an image that I had tacked to the wall in front of my bed, a late medieval portrait of Joan of Arc wearing gold armor riding on a white horse.  When I could read again, I read Wodehouse’s Jeeves stories because they made me laugh.  

Eventually, my husband could bring the girls for a brief evening visit, and eventually I could hug them again.

Eventually, I could eat again.  The first meal was chicken broth.  I said a prayer over it.  Do you know how good hospital chicken broth is?   Do you know how beautifully the sun rose outside my hospital window?

On that April day, when I left the Beth Israel hospital room, I walked out into spring:  “Hello, trees!  Hello, flowers!”  I called out. 

That day was 21 years ago.  Since then, I’ve learned that I have the BrCa1 gene mutation, and as many people here today know, that knowledge must be dealt with one way or another.

I’m not a Pollyanna and I try hard to keep magical thinking to a minimum.   But I have a strong sense of the mind-body connection and what used to be called the power of positive thinking.  I know the power of feeling gratitude—for all the kindness that I’ve received from people who helped and supported us.  I know the power of love, especially the sustaining, embracing love of a 40-year marriage.  I know the power of survival itself, because it endows going to work every morning with an imperative:  make this day count.  And when things get rough, I know the power of saying quietly and firmly, “Every day is a blessing.”

Greg Jones:

A year and a half ago, I didn’t know how to spell Multiple Myeloma.  Or even what it was.  Unfortunately, now I know all too well what Multiple Myeloma is.  Someone who died of Multiple Myeloma last November wrote a blog where he described Multiple Myeloma as an incurable disease that is inevitably fatal.  But he survived 14 years after having been diagnosed with it in 1998.  I am planning on taking full advantage of all the recent advances and doing even better.  But can’t the same be said of life: an incurable condition that is inevitably fatal?  After all, we don’t get to stick around forever, do we?

Cancer can certainly teach you some pretty elemental lessons.  Such as how precious life is.  Yes, everybody knows that, but when you have an episode where it is nip and tuck, and your doctors and nurses pull you through, you suddenly appreciate what you still have all the more.  I had never had such an episode, so I took just about everything for granted.  I liken the blood infection I had soon after my stem cell transplant to “walking through the valley of the shadow of death”.  The rod and staff that comforted me were the nurses who monitored me and the doctors who figured out what the right medicines were.  They were with me.  Now I realize what it means to say “My cup runneth over.”

The experience of cancer has made me much more emotional.  Sure, I used to cry occasionally, but not at the drop of a hat.  Now all it takes is for me to try to explain how much I appreciate what the nurses did for me.  An episode of “Call the Midwives” is now a multiple-handkerchief event.  Holding my grandchild can also be a multiple-handkerchief event.  I think this is an improvement.

Being on a panel with some who have survived 20 years is humbling.  I certainly hope to attain their ranks.  But the reality is that Stem Cell Transplant survival rates hit 50% after 6-7 years.  Clearly I will do everything in my power to be in the cohort that survives, but some things you simply cannot control. 

I am a newbie in this group, so I do not have much to add to their insights.  Yes, my survival is more recent, and because of that my chances have improved dramatically.  Thank goodness I did not get this disease 30 years ago.  I would be half way through my expected survival already, and the symptoms would certainly not have been curtailed as they have been.  But I had it when I had it, and I am incredibly grateful for the research, the clinical trials, and the breakthroughs that have led to the improvements in this field.  Yes, we get something very tangible for funding the National Institutes of Health, and I for one would gladly pay additional taxes to support more research.

BIDMC, I want to say Thank You.  From the diagnosis to the treatment to the stem cell transplant, and to the recovery, the BIDMC has been a wonderful organization for me.  The doctors solved the riddle of what was going on with me.  The nurses provided the humanizing care and the touch that brought me through.  My infusion nurse gave me the booklet from last year’s Celebration of Life that alerted me to this wonderful occasion.  The transplant team (nurses, doctors, room cleaners, lab technicians, etc.) all did their job and pulled me through.  Naturally, I fell in love with all my nurses, but there are a special few whom I will remember forever.  You people saved my life, and I will be forever grateful.  I can now see why those people donated all those elevators.  They must have been given a similarly transformative gift.  BIDMC, Thank you from the bottom of my heart.