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.

A Glorious Run

A week ago Saturday, 4/27, 6 of us “ran” in the MMRF Race for Research at Carson Beach in South Boston.  It was a wonderful morning and a great place for a race.  We ran out for 2.5 kilometers along a road paralleling the beach and back on the other side of the same street, so you always knew exactly where you were on the course.  The race is sponsored by some pharmaceutical companies and co-chaired by two prominent Boston Multiple Myeloma doctors.  One was the Dana Farber doctor we went to for a second opinion last June, Dr Jacob Laubach.  The turnout for the race was incredible.  Over 1400 people had signed up, and there were certainly lots of people there.  The race results shows the times for 507 participants, but I suspect many of the walkers did not actually wear the pinnies that contained the electronic strip that actuated the timer.

Here are the Stow participants in the race, holding the Stow Independent, for submission to the local paper:

Actually, Wally, the one to the right didn’t run with us, but he was quick to include himself in pictures.

Here is the full team: Sharon Quinn (Bridget’s mother), Bridget (Brian’s wife), Brendan Jones (in the stroller), Brian, Barbie, myself, and Arnie Epstein.

Bridget said that Brendan beat her across the finish line.

I shuffled along at a 9:53 per mile pace, which was just about as fast as I could manage.  Arnie & I finished within a second of one another, coming in 3^rd & 4^th in the over-65 male category.  I am sure I was slowing Arnie down as we ran together, but he claims otherwise.  Considering that in December it was a major accomplishment for me to complete a walk of less than that distance around Jamaica Pond from Brian & Bridget’s house, I was pleased with the result.

Even more impressive are the fund-raising totals.  The team has already raised $4,500!  Plus I know of another check on its way to the MMRF and a company match that should put us really close to $5,000!  Incredible!  It brings tears to my eyes to think that people would be so generous in my name.  Truly humbling.  Not to beat a dead horse, but if you just forgot, support.themmrf.org/goto/GregsLegs will accept donations until 12/31/13.

This blog post is late because Barbie & I left the afternoon right after the race for a wedding in Tuscon, Arizona.  The granddaughter of our landlord in Tehran, Nassim Mody, married Kevin Coogan on Sunday, 4/28.  It was both a western wedding and an Iranian wedding.  Most of the family was there, and it was great to catch up with them after 35 years!  We surprised ourselves by how much Farsi we remembered.  The family is both gorgeous and impressive.  All are highly educated and 8 of the 10 in the grandchildren generation are girls.  Each of the twin girls in the landlord’s family had twin girls themselves.  We really enjoyed hearing how the girls in the Zandion family remembered their interactions with us and how they looked up to Barbie as a role model.  Here are the bridesmaids in the wedding, all cousins of the bride:

We stayed at a hotel that is part of a retirement/golf community south of Tuscon.  We really see no need to retire to a desert where the afternoon temperature is 98 at the end of April.

My Latest Homework Assignment

Every June for the last 20 years Beth Israel Hospital has hosted a symposium called A Celebration of Life.  It describes itself as “a full day of celebration, education and community, which raises awareness about the battle against cancer.”  Everybody who has been a cancer patient at Beth Israel is invited.  It is also described as “an opportunity to share your personal stories.”  To that end they invite you to contribute to a Book of Writings.  My favorite infusion nurse, Mary Jo, gave me a copy of the Book of Writings for 2012.  I read it cover-to-cover, and I frequently found myself in tears.  I said to myself that I should contribute something.  And then I never did.  Suddenly last weekend, I was moved to put digital pen to paper.  I submitted what I wrote on Monday, 4/15, only to discover that contributions were due 3/31.  After some uncertainty, I was told on Wednesday that they will be able to include my piece in the book.  The Celebration of Life closes each year with a Panel of Survivors.  The organizers asked me to participate, as a relatively new survivor.  They will also seek out survivors from 20 years ago.  I am most honored, and I will probably speak of my gratitude toward the medical staff who pulled me through.  So it was turned in late, and it may have been chewed by the dog, but here it is:

The unexpected benefits of having cancer

Cancer cures you of any sense of invincibility.  You, who may have been an aggressive athlete, who may have been a competent professional, who may have been a leader in your church or town, are suddenly unable to do much more than get to the bathroom and keep yourself clean.  You who excelled at gathering and retaining information, are suddenly barely able to read more than a page or two, and then often with next to no comprehension.  You, who always cared for and provided for others, are now one that others have to take care of.  Yes, you never tried to lord it over others, and yes, you tried to act like an ordinary person, but suddenly you realize that your self image was based on the ability to get things done, to provide, to care for others.  Without that capability, who are you?  What do you bring to the table?  Forget about invincibility.  Your essence now has to embrace vulnerability.  You have to accept that you are a mere mortal.  You were all along, but cancer has a way of hitting you upside the head with that fact.

Cancer opens you up to emotional expression.  When you are lying there 9 days after your stem cell transplant, when you have no immune system and your body is attacked by a raging infection, your gratitude that the medical staff have the tools and the insight to pull you through, leaves you in tears as you try to thank them.  You are unable to say thank you to your favorite nurses without springing massive eye leaks.  You have found out what it means to “walk through the valley of the shadow of death”.  When you tell your family what that felt like, you are overwhelmed by the wonder of having survived the ordeal.  Maybe you thought you had an appreciation for the value of life.  Now you know how truly glorious life is.  Nothing like almost losing something to awaken you to its value.

Cancer makes you acutely aware of all those people who really want to help you.  Sure you had teammates, co-workers, social acquaintances, and members of the various communities you belonged to.  But you only ever expected family to rally round when the going got tough.  But all those different people helped out driving, making meals, doing the chores you used to do, caring for the dogs, …  All those different people responded to the LotsaHelpingHands appeals.  You may have thought you were a lone ranger, but in fact, you were a mouseketeer.  All those other mouseketeers are right there to help you and to plug the gaps your disability has created.  They say it takes a village.  And that is not just to raise a child.  It is to respond to one laid low.  Another nuance to add to your conception of yourself.  Someone who has lots of friends willing and able to help out in a pinch.  You never knew!

Cancer makes you appreciate the caring professions: doctors, nurses, people who scrub the floor.  The list starts with the doctors, but the ones who really matter are the nurses.  They are there to help.  That’s their job!  And they do it so well.  The little tricks they have from seeing how others cope, such as the lotion that relieves that annoying rash.  Or the cream that makes bi-hourly diarrhea bearable.  Or the hot blanket that brings you back from the bone-crushing shivers.  And unlike the doctors, whose first names you only see on medical bills, you only know the nurses by their first names.  Is this an attempt at anonymity?  Or is it a shield so that you can’t act on your crushes in the outside world?  Whatever, the nurses are your connection to humanity that pulls you through, that gets you through the valley.

Cancer makes you appreciate medicine, both the science and the practice.  You are exposed to the practitioners who decide what you have and how to treat it.  They carefully feed you enough information so that you can understand and cooperate in the treatment.  They assess your physical symptoms throughout your treatment, and react to how the disease is responding to their treatments.  But you realize that there are many aspects of the medical profession that you never see, but which you totally rely upon.  Pathologists read your specimens and determine if the key markers are going in the right direction.  Research scientists perform the basic research that leads to advances in treatment regimes. Clinical doctors perform the studies and clinical trials that demonstrate the effectiveness of new treatments.  Engineers and technicians create the machines that see into your body, measure the key characteristics of your blood in 45 minutes, give you color images of your heart and lungs in motion, and separate the elements in your blood so that stem cells can be isolated.  You owe your continued life to both the science and practice of medicine.

Cancer lets you know how much it helps to express yourself in writing.  As many others who have written for the Book of Writings, the written word helps you form vague feelings into crystalized emotions.  You have never been through such an experience, and you want to share that experience with others.  Writing helps you share, and in doing so, helps your own realization of what you have been through.  It may still amaze you that people care to read your drivel.

You may have cancer, but there is always someone who has a worse case than you do.  As you get up off your hospital bed and begin walking slowly around the ward, you see others at different stages of their treatment, with other types of cancer, and different intensities of cancer.  You may have been feeling sorry for yourself, but there are others far worse off than you.  You may get there eventually if your disease reoccurs, but for now you are in comparative easy street.  So cancer has a way of making you thankful, even in the face of adversity.

Nobody chooses cancer.  Everybody fights cancer as hard as they can.  But you learn something from cancer, and it reveals a good deal about your life that you may have been unaware of.  Let’s hope that those revelations are ones you can live with.

Meanwhile, wonderful things have been happening on the MMRF Race for Research front.  The team Greg’s Legs is now up to 6 participants, and my wife has yet to join.  The team has raised a total of $3,255!  About three times what I ever expected or hoped for.  I would like to say a heartfelt “Thank You!!!” to everyone who has contributed.  And point out to those who have not done so yet that it is easy: simply go to http://support.themmrf.org/goto/GregsLegs.  On the right hand side of the page is an orange button to click to Donate.  If you care to run or walk 5K on next Saturday, click on the Join My Team button just above that.  But enough badgering.  I am incredibly grateful to everyone who has supported these efforts.  Maybe when my MM comes back, there will be new tools in the arsenal to combat it.

Good Tests, Minimal Treatment

We met Wednesday with three different doctors that comprise Barbie’s treatment team at Mass General Hospital.  “We” consisted of Barbie & her support group: me, our daughter-in-law Bridget Quinn (a doctor herself, so she could understand the medical lingo), and Nina Huber, a member of the chorus who underwent breast cancer treatments at MGH herself 7 years ago.  The treatment team consists of Dr. Taghian, a radiation oncologist, Dr Gadd, the surgeon who performed the lumpectomy, and Dr Shin, a medical oncologist. 

The base information that they were dealing with was very good.  The lump was 1.6 centimeters long, 1.5 wide, and 1 thick.  So it was smaller than an inch in its longest dimension, which means it was caught quite early.  It tests positive for hormone receptors (ER+ and PR+), so it will respond well to aromatase drugs that suppress estrogen production.  It tests negative for HER2, which is a good thing in that HER2 positive tumors are more aggressive.  The result of an oncotype test was 7.  Anything less than 18 is considered low.  So low, in fact, that chemotherapy is not recommended.  Anything over 30 (the test can go as high as 100) has a high risk that the cancer will reoccur, and chemotherapy is recommended.  18-30 is intermediate, and chemotherapy may or may not be worth the risk of the side effects, depending on other characteristics of the individual tumor.  The risk of recurrence with an oncotype test of 7 is 8% per decade.  The only disappointment was that the tumor was described as a grade 2 tumor.  That is on a scale of 1 to 3, where 1 is slow-growing, 2 is intermediate, and 3 is fast growing.  But everything else was a good as possible, given one has a cancer.

The first doctor we saw was Dr Alphonse Taghian, the radiation oncologist.  The purpose of radiation is to reduce the likelihood of recurrence.  With no radiation the recurrence rate is 15 – 40%.  Radiation reduces that to 2%.  He outlined 4 possible courses of treatment.  The traditional treatment is 6 weeks of radiation, 5 days per week.  The first 5 weeks target the entire breast, and the last week targets the location of the tumor.  The second treatment is a Canadian variation on the first, which consists of 4 weeks of radiation, 3 treating the entire breast, and the last week targeting the tumor location.  The third course is called Partial Breast Irradiation (PBI) which consists of intense radiation of just the area where the tumor was removed.  This is done in two treatments per day for one week.  The fourth course is very similar to #3: radiation targeted toward the location of the tumor, but  just once per day for 2 weeks.  All treatments appear to have the same results.  They don’t do treatments 3 & 4 for many types of breast cancer, and the amount of data documenting the results varies.  They have 25 years of data for treatment 1; 12-15 years for treatment 2; 9-10 years for treatment 3; and treatment 4 has been in a clinical trial for just 1 year.  Treatments 1 + 2 are available in many locations, including Emerson Hospital, which is much more convenient to Stow than MGH.  Treatments 3 + 4 are only given at MGH.  Dr Taghian did not recommend any one treatment, saying Barbie should sleep on the decision.

The second doctor we saw was Dr. Gadd, the surgeon who performed the surgery.  She gave Barbie a copy of the pathology report that she had discussed over the phone.  She inspected the incisions, and was impressed that Barbie has healed well.  Maybe conducting is therapeutic.  Dr Gadd will see Barbie again in a year.  She emphasized that the results were all good, and Barbie has a very treatable form of breast cancer.

The third doctor we saw was Dr. Jennifer Shin, the medical oncologist.  She was very concerned about Barbie’s emotional reaction to what has happened to her and the news she was getting.  While the surgeon and the radiation oncologist worry about cancer in the breast, her concern is about the overall outcome and the possibility that this cancer can spread to other parts of the body.  Because of the low oncotype result, chemotherapy is not recommended.  But hormone therapy is recommended, and Dr Shin prescribed an aromatase drug that she should start taking after the radiation treatment is complete.  Barbie will take this drug for 5 years, and the anticipated effect is to halve the rate of recurrence.  So instead of an anticipated recurrence rate of 8% per decade, it becomes 4%, which is not significantly different from the rate of new cancers for post-menopausal women.  The effect of the hormone therapy is to eliminate estrogen, which causes tumor cells to grow faster.  Unfortunately, it also results in a reduction in bone density, so Barbie will get a bone density scan as a baseline before she begins the treatment, and she may have to take something like Fosamax to counteract that effect.  Another piece of good news: the copay for the drug prescribed is $19.33 per month.  A far cry from the cost of Multiple Myeloma drugs!

While waiting for between doctor sessions, Barbie and her team came to a decision regarding which radiation treatment to choose.  Barbie opted for choice 3, the one-week PBI treatment in at MGH.  It will get the treatments over quickly, and let her start the hormone therapy sooner.  Scheduling is underway; Dr Taghian said the first available time would be the second week in May.

Net: This was a small, relatively benign tumor that was caught early.  The lumpectomy was successful, and the lymph nodes show no sign of it spreading.  It is PR+ and ER+, so it will respond well to hormone therapy.  It is HER negative, which means it is less aggressive.  The oncotype of 7 means chemotherapy is not recommended.  The course of treatment will be 1 week of targeted radiation in May and 5 years of estrogen suppression. 

Emotionally, it was a great relief to get all this information and have a definite treatment plan.  The doctors are all top notch, and the treatments should not be overly intrusive.  Naturally it would have been nicer if Barbie did not have had any cancer, but if one is forced to become acquainted with this disease, this was a good type to have.

On the Multiple Myeloma front, the race to benefit the MMRF (Multiple Myeloma Research Foundation) is coming up soon on April 27^th.  We now have a team of 6 (assuming Barbie can now sign up), and the fund raising is going well.  You can still join the team if you would like to run or walk a 5K course at Carson Beach in South Boston.  If you are unable to do that, you can participate financially by donating at http://www.themmrf.org/teamraiser/races/1590.html.  MMRF earns awards for having a high (>90%) portion of the funds raised go to actual research.  The efforts they fund will make it so that when my MM comes back, I have a greater chance of surviving.  Recently I read a blog by Lon Nessler, a Yale graduate who died last November of Multiple Myeloma.  See http://nesseler-medical.blogspot.com/.  He describes MM as a rare, incurable, universally-fatal blood cancer.  The goal of the MMRF is to remove the words incurable and universally-fatal.  Obviously their efforts were not in time for Lon Nessler, but who knows, they may be in time for me.  That’s why I’m running the race.  Please join my team in whatever way you can.

Meanwhile, we continue to get great joy from our sons and their growing families, and hope to be able to spend more time with these ever-so-cute little ones.  Here are Brian + Brendan, Andrew + Emma.  Both little ones clearly taking nourishment.

The Best of all Possible News

Barbie got a call this afternoon from Dr. Gadd, the doctor who performed her lumpectomy 8 days ago.  The pathology report came back early, and all the news is good.  The cancer measured 1.6 centimeters, and all the margins around it tested negative; hopefully, they got the whole cancer.  Plus the sentinel lymph node was also negative.  This was the best possible result.  Yes, the growth was beyond the margins of the duct, but small enough to be classified as a stage 1 cancer.

Repeat: all the cancer is gone, and it has not spread to the lymph nodes.  Hooray!!!

The relief is palpable.  Barbie can now concentrate on preparations for her concert without having nagging doubts about what the pathologist’s report will say.  There will be a conference of several experts on 3/27, the Wednesday after the concert to determine what the course of treatment should be.

• Last week when Barbie was getting operated on, I went to Beth Israel to have a 4-week checkup and to get an infusion of Zometa, the medicine that promotes increased bone density.  The nurse I normally get, Mary Jane (MJ), has gotten to know Barbie and me quite well.  She was devastated to hear that Barbie had cancer too.  She immediately went somewhere, and came back with the book I Flunked My Mammogram, and gave it to me to give to Barbie.  It has lots of information about Breast Cancer, in understandable layman’s terms.  It was a perfect gift.  Thank you MJ!  I read it while waiting for Barbie to come out of the operating room.  One of the diagrams it contains presents information about the size and growth of breast cancer tumors.

We took 4 things away from studying this diagram.    

1. Barbie’s tumor, at 1.6 centimeters was around 32 doublings. 
2. At 90 days a doubling, and since the tumor only becomes detectable at 30 doublings, her tumor has only been detectable for 180 days.  180 days before her surgery was September 6^, 2012.
3. If Barbie’s mammogram was every year in June, it could have easily been a 2 centimeter tumor and likely a higher stage cancer.
4. The tumor has been growing for 8 years.  How many other tumors are growing in our bodies that are undetectable?

The next step is to deal with the concert.  Now that worries about the disease are somewhat diminished, Barbie can concentrate even more fiercely on the music.  She is very enamored of this piece.  I expect to be won over by the performance.

What happens next on the medical front will be determined by a conference with MGH experts, hopefully on March 27.  Oncologists with specialties in radiology and chemotherapy will be there, as will Dr. Gadd.  Barbie has asked if they can do an Oncotest before that time.  This test categorizes the DNA of the cancer, and determines on a scale of 1 to 10 how likely it is to return.  That group will determine her course of treatment, whether it be radiation, chemotherapy, estrogen suppressing pills, or some combination of these and other options.   But for now, it is just a huge relief to know that it is out and gone, and has not progressed to other systems.

Thank you all so much for your encouraging notes and thoughts.  We are both going to gain weight on all the delicious meals and special treats!  The best aspect of all this is learning about all the good friends we have.  It truly helps.

The Shoe on the Other Foot

You haven’t heard much from me because I am doing really well.  March 5^th (day 126) I saw Dr Levine, my hematologist/oncologist, and he declared me healthy.  I was on a 4-week checkup cycle.  He now has me on a 6-week checkup cycle.  My blood numbers all look good, my weight is up, and I have a spring in my step again.  I have to take some medicines to prevent shingles and a particularly nasty form of pneumonia, since my immune system is still coming back.  I am hunched over because of the broken bones in my back, but I am seeing a physical therapist to minimize that.  But I am running each morning and feeling really well.

On the family front, we are now proud grandparents of 2 new babies.  Bridget, wife of Brian, had Brendan on January 9, and Jess, wife of Andrew, had Emma on January 15^th.

 

That’s Brendan on the left, Emma on the right.

Here Emma is on the left, Brendan on the right.  

Now both almost 2 months old, they are wonderful little bundles to hold.  Yes, as a grandparent, you can have them when they are behaving nicely, and then give them back to more responsible parties when they get inconsolable.  My back makes it so that I cannot do prolonged walks to stifle their screams, but then usually their father takes over, and saves the day.  

The oldest grandchild, Tyler, just had a 3-year-birthday party, with a Lightning McQueen theme.  

Andrew & Brian decorated the birthday cake(s).  Lightning McQueen is on the left, Mator (a tow-truck who fixes Lightning up after he crashes) on the right.  All in all the family news is good.

So you must be wondering by now, why the blog post?  Well the reason is that Barbie has just undergone surgery for breast cancer.  She had an annual mammogram in the middle of January.  At the end of January she was called back because they wanted another look.  They took pictures with 3 different mammography machines and did an ultrasound.  Then they set up an appointment for a doctor to review the results with her.  The pathologist’s report raised all sorts of negative possibilities.  A biopsy was the only way to resolve what was happening.  She got this news the day before we left for Barbados.

A 1-week trip to Barbados was supposed to celebrate my recovery from MM.  It was wonderful to be basking in sunny climes during the week of the blizzard of 2013.  We had a busy time seeing much of the island, going on a couple of sails, putting in some serious beach time, and having a number of very nice meals.   But during all this time Barbie was constantly on her I-pad searching the internet for information about what her mammograms raised as possibilities.  The item in question was described as a spiculated mass in a duct.  Looking that up on google produced the following:

The most common presentation for breast cancer would be what is called a spiculated mass. That is a white area on the mammogram that has a star-burst appearance. It has lines, straight lines emanating from the mass, and that is very suspicious for a cancer.

Barbie had asked the doctor’s secretary for a copy of the pathologist’s report on the mammogram.  It turned out that on the second page there was something she didn’t understand, and which the doctor had not reviewed with her.  It said BI-RADS 5.  She initially assumed that was some kind of insurance classification code.  But eventually she discovered that it was a system for classifying mammogram results.  BI-RADS stands for Breast Imaging-Reporting and Data System.  It has a scale of 1 to 6 where 1 is nothing and 6 is confirmed cancer.  BI-RADS 5 is highly suggestive of malignancy – in fact the likelihood is 95% malignant.  Needless to say, that did not make her time in Barbados very relaxing.  Luckily, Nina Huber, one of the members of her chorus, who had breast cancer herself 7 years ago, took on Barbie’s case.  She strongly advised going to Mass General Hospital, and she arranged an appointment for Barbie the day after we returned from Barbados.  She even drove the mammography results into MGH, since Emerson had mailed them regular mail, and with the blizzard, they were not going to make it in time.

February 15^th, Nina drove Barbie into MGH.  Barbie met with a Dr Gadd, who confirmed the need for a biopsy.  Luckily there was an opening in the schedule, and Barbie was able to get the biopsy done later that day.  The results were positive, and surgery was scheduled for March 5^th.  This made Barbie very nervous, as she has a major concert on March 24^th.  Sounds of Stow will perform Handel’s “Jephtha”, a wonderful oratorio that she has put incredible effort into learning.  After a certain amount of hemming and hawing, having the surgery done as soon as possible won out.  Tuesday, February 26^th, Barbie & I went into MGH for prelims.  We met with Dr Gadd again, who explained the procedure: a lumpectomy of the suspicious mass and a sentinel node biopsy.  In other words, they cut out the cancerous mass (plus a margin of tissue around it), and they identify the first lymph node that drains fluid from the breast.  This is the lymph node most likely to show signs that the cancer has spread outside the breast, and they take it out for examination by a pathologist.  Barbie was top on the list to take the place of anybody who cancelled surgery that week.  None did.

So Tuesday, March 5^th, we went into MGH bright and early.  They did some basic prep work.  This involves another mammogram during which they insert a needle to identify exactly where the suspicious mass is.  Others who had undergone this process described it as incredibly painful.  Barbie made sure they numbed the area before doing this.  They also injected a blue dye and  a radioactive substance into the region of the spiculated mass.  Eventually, that dye made its way to the sentinel lymph node, and the color told them which node to take.  Sometime after 11 am Barbie went under the knife.  She had a general anesthetic, so she was blissfully unaware of anything.  When it was over the Doctor phoned me and reported that everything went according to plan.  They excised the mass in question and a reasonable margin of healthy tissue around it through an incision on the top of the left breast.  Then they made an incision in the armpit and took the sentinel node.  The doctor said she examined the lymph gland, and it looked cancer-free to her.  But we still need to wait for the pathology report to determine if there is any indication of cancer in the lymph nodes.

Barbie took quite a while to come out of the anesthesia.  When I was finally able to go into the area where family members could visit with patients, she was still somewhat groggy and quite pale.  But they got her dressed and bundled her up and allowed her to leave with me.  We got home just after 6PM, and Bridget, Brian, and Brendan were here at home for moral support.  A piano parent had provided a dinner, so Barbie was able to eat and crash in short order.

Wednesday was another day of recovery.  Barbie had a minor headache all day from the anesthesia.  Pain from the incisions themselves was alleviated by pain medications that Bridget safely metered out.  And she was able to sleep thanks to ativan (or lorazipam), a general relaxant.  Thursday she was able to be up and about much more.  She took off the immediate bandages over the operation, and the incisions looked very clean.  She is not teaching this whole next week, and the hope is that she can spend time with her music getting ready for her concert.  Luckily it also takes her mind off what she has just gone through, and the waiting period.

So we are on pins and needles until the pathology report comes back, as follow-up treatments will be determined based on those results.  Meanwhile, a director of another chorus in the area who plans to do a Handel Oratorio next fall, will fill in for Barbie at the first rehearsal on 3/16.  The hope is that Barbie will be well enough to take the podium on 3/24, but if not, this person will be able to fill in for her.  Any further surgery, radiation or chemo therapy treatments will start after the concert.

Throughout the summer and fall, we frequently remarked that it was a good thing Barbie was healthy while I was undergoing my illness.  Well, we are incredibly lucky that I am healthy while Barbie is undergoing her trial.  We certainly hope that it was caught in time, and this will just be a minor bump on the road.  Everybody assures us that they are able to do wonderful things with breast cancer now.  But cancer is potentially a deadly disease, and just a brush with it reminds you of your mortality.  I am now getting to experience what Barbie went through last October-November, watching your spouse battle a nasty disease.  Yes, you can be there for them, and yes, you can provide moral support, but ultimately it is the doctors, pathologists, anesthesiologists, and nurses who actually fight the disease.  A family member only gets to sit and wait, and hope the experts know what they are doing.

I became much more emotional during my stem cell transplant, resulting in a bad case of leaky eyes.  Barbie never lacked for tears, but now she finds herself weeping in gratitude for the miracles the medical establishment is able to do.  She weeps in gratitude for the help piano parents are providing by bringing meals.  She weeps in gratitude for the logistical help chorus members are providing in getting ready for the concert.  News of her situation has spread quickly, and everybody has been incredibly helpful.  It is great to have such a network of supporting friends.

Now is the time in this blog for instructions for what you need to do. 

First, Barbie’s condition was discovered at a routine, annual mammogram.  She is adamant that everyone continue to get their routine annual mammograms, in spite of all the current talk that they yield false positives occasionally.  Keep those appointments!  Even after Barbie’s mammogram identified the suspicious mass in the left breast, it was undetectable by manual examination.  The greatest risk factors for developing breast cancer are gender and age, not things we can dodge through life-style choices.

Second, if you do not have anything else on your calendar, come to Stow for a performance of Handel’s “Jephtha” on March 24^th at 3PM.  If Barbie is not on the podium, she will still be the driving force behind the performance.  She arranged for all the soloists, trained the chorus, and made cuts to reduce 3+ hours of music to just over 2 hours so the Sounds of Stow audience can make it through the performance.  The plot is quite dramatic, and Barbie thinks the music is quite expressive.  Come and decide for yourself.

Third, those of you who can walk or run, please consider helping me to form a team to run in the Multiple Myeloma Research Foundation Race for Research in South Boston on April 27^th.  Those of you who cannot participate, can provide moral and financial support by donating money in our names.  Pictures of races in prior years look like lots of fun, and you don’t need to be a world class runner to participate.  Check out the details at http://www.themmrf.org/teamraiser/races/1590.html.  If you are up for it, send me an email.

Lastly, do whatever you do to urge a positive outcome for Barbie.  Prayers, incense, positive vibes, or whatever works for you.  Clearly, you helped me along.  Now it is Barbie’s turn.  We are both overwhelmed with gratitude for all your caring.