love shrinks tumor and other miracles

October 16, 2010 § 14 Comments


Predictable was out, and gratitude was in at our mid-life not first marriage for either of us wedding. I’m an artist, writer and advertising executive. Marty, a world-class brain researcher and expert on ADHD.

First and foremost, we wanted a celebration of love and of life, something that would allow us to express our deep appreciation for our friends and for our families.

Contrast is powerful and our wedding and relationship was full of it. When I first met Marty, thanks to the internet, all I saw were our differences. I was an ad chick and hanging with the creative crowd.

Marty on the other hand, was 100% Ivy League and the quintessential Harvard Professor, from his barbershop hair cut to his sensible shoes. Thank goodness he was a Mac or we might not have continued to email.

While Marty missed subtleties in shades of green, he knew enough to notice my daughter Frannie. She celebrated her 5th birthday after we met and on date number two, he arrived with a birthday present perfect for the then Princess wanna be.

This researcher did his homework; the way to a mother’s heart, was through her daughter. Eventually I figured out what Marty knew all along, our differences made for a sweet balance. I took yoga but Marty understood the principals of Zen.

We had the personal contrast thing down, but it didn’t end there. I ate my healthy mostly vegetarian diet and exercised regularly. Things processed or packaged were verboten in my home and in my body.

Marty on the other hand, skipped breakfast and opted for a full liter bottle of Coke Zero which he’d replenish through out the day. Ten hours of Aspertame were washed down with rich cheese and bowls of vanilla ice cream.  Carrying a change of clothes between houses seemed to be his main form of exercise.

So, it was quite a shock when the day before my 48th birthday, I was the one diagnosed with cancer. I was fit and healthy or so it seemed until we found the tumor the size of a golf ball in my left breast. That was November of 2006, I had known Marty for less than 2 years.

Our next year together I was in treatment. The year after that, I tried to recover from the debilitating therapies. Contrary to popular belief, the challenges associated with cancer treatment begin when the chemotherapy and radiation end.

Your wonderful support team assumes everything is “back to normal”, and that you’ll pick-up just where you left off. In my opinion, that only works if you left off in bed and under the covers. I was exhausted, chilled and soaked in sweat thanks to a chemically induced menopause.

Post mastectomy it was a relief to learn that Marty was more an ass man than a boob guy. I was also grateful he was a doctor and someone who could accompany me to medical appointments, look out for my best interests and talk scientific blah blah if he thought it might bring us closer to an expert.

We had spent four years together, with the first two, my being suspect of Marty’s sincerity. Once cancer entered the picture, his sincerity was self-evident. My mom would have called him “a real mensch”.

Both Frannie and I welcomed his quiet calm and deft skill as a human alarm clock. Were it not for his shakes, pokes and morning announcements, we’d be sleeping through lunch and maybe through the second grade.

It didn’t happen quickly, but eventually I gained traction and cancer moved into my rear view mirror. I was slower than my previous 100mph self, making progress and moving into the fast lane. We vacationed with friends, I travelled for work, and a speaking engagement in Johannesburg South Africa presented itself as the perfect opportunity for a family safari. I was all about embracing life and living to the max. I had no idea what was waiting for me next.

 

Shortly after our safari, I had the most unusual pain in my head, not a headache but a pain inside my head. A couple of MRI’s later and we learned I had another tumor, this one in the base of my skull. Like a flat tire at high speed it was the very last thing we expected. A bone met the size of an egg, was pushing against my cerebellum.  I crashed.  Paralyzed by pain and occasionally incoherent, it was three years since my initial cancer diagnosis and now I had metastatic disease, stage IV breast cancer.


They pinned my head to a table, and in true video game style aimed mega doses of radiation to the tumor from every axis, vector and galaxy possible. With the help of pain patches, and first class survivor genes (both my parents went through the worst of the Holocaust), I was rallying to deal with this cancer. The way I looked at it, it was like having an extra 10 or 15 pounds. I absolutely hated it, I couldn’t do a damn thing about it, so I’d stay medicated and try to ignore it.

This past January, my head sore from surgery, my neck immobile and my speech slurred from a combination of meds and exhaustion Marty turned to me and said “Let’s have a party.”

I had no idea what he was talking about.

“Let’s have a huge celebration” he said “let’s get married”

We had known each other for five years and over the course of those 60 months, had discussed marriage, but I was always dismissive. We had both been married before and the current situation seemed far from festive.

With my head healing and body scarred, I gave it more thought. Marty was always there for us. What else did I need? My other concerns evaporated.

I said “yes” to the celebration and instantly I had something wonderful to plan and to focus on. I wasn’t Marilyn with metastatic disease, I was Marilyn, newly engaged and planning a wedding.

 

For a full six months the MRI’s, Pet scans and blood tests were all routine until they weren’t. Two months before our wedding, the unsettling pain in my head resurfaced. The pain and a questionable test result, led my doctors to conclude the possibility of advancing disease. From the films, it appeared as if the tumor was threatening to impinge on my brain stem. It’s position between my cerebellum and jugular vein was textbook rare and extreme.

There were experts who pushed for surgery, while others warned that surgical intervention would likely do more harm than good.

I began a course of oral chemotherapy, five pills a day. My hair would remain in tact, but my hands and feet would crack and burn. I read the small print, everything would be fine as long as I avoided use of my hands and feet. Sure thing. When walking across a room becomes a challenge  I was told dosages could be re-evaluated. I’d be on this drug, as long as I could stand, literally.

I asked my attorney to finalize my will, Marty spearheaded the effort on second opinions and our DJ asked for our playlist and song choice for the first dance.

Blunt and bizarre, it could have passed as soap opera or satire. Instead it read like Shakespeare, tragic and hard to believe.

I started to imagine my wedding day as a great goodbye and combed through my list of friends insuring all were invited. Marty did the same. A treasured necklace from my mom was transformed into so many pairs of earrings and necklaces for my sisters, and nieces. I just wanted to give. Give away anything precious and share what I had while I could.

I tried to convince myself that Frannie, now ten years old, would be OK, even as I used every muscle to avoid thinking about it. Frannie, on the other hand, never missed a beat. She’d share her fear of losing me and I’d fight back the tears.  “I am always in your heart” I’d say trying to remember the ‘right’ response. I’d add the more practical points about our “plan” with mentions of all the family and friends who would step in and of course, Marty would be her dad soon enough.

What I never mentioned was that at 51, I still ached for my mom. She passed away a dozen years ago, and while the sting had softened the loss had not. I hated to imagine such pain for Frannie.

There was a great deal of crying that month and I saw myself walking down the aisle on my wedding day trying to hold back the tears with one hundred emotional guests, their eyes welling up as they flanked either side of me. I’d hand Frannie off to Marty and our marriage would last a minute, no more.

It seemed as though the wedding would be my signature farewell.  That said, I had to own it in everyway possible, put my mark on every detail. I called on my past theatrical experience and channeled my inner Art Director. I worked my ass of enjoying the decision-making moments, happy to wrap my arms around something I could actually control.

If a hint of the routine crept in I searched for an alternative. The thought of the first dance flummoxed me. A full year of private Salsa lessons and Marty and I still couldn’t master a move. So, we made the first dance a Contra Dance and would just call everyone to join us on the dance floor.

I continued to throw out the standard wedding conventions, opting instead for things we just loved. Marty and Frannie were partial to vanilla ice cream and hot fudge, so we passed on the iconic wedding cake and ask our friend Steve to make his amazing fudge sauce.

I visualized our guests; family, friends and colleagues. I thought about prayer, and chants and the power of a large group in perfect sync. I dreamed of harmonic healing energies. I believed in miracles and medicine and anything that offered hope.

I had no idea what a Healing Drum Circle was, but I knew our wedding needed one. I found Julie Corey who ran them all the time for survivor groups as well as anyone else seeking healing, wholeness or a good time jamming. My nephew Jonas newly christened, as a Shaman would be on hand to keep the fire and call the directions.

I would make my good-bye beautiful, a feast on every level. I pictured something spiritual, but also delightful like autumn leaves, brighter than you expect. Mostly I wanted this event to be a gift to everyone. A giant thank you, a huge embrace and a lasting memory of me.

We had been transforming Marty’s land in Rye, NH and it was ready for prime time with stunning stonewalls and picture perfect fences. Things we planted early in the season had taken hold in fertile ground and continued to bloom well into the fall. The rose bushes never let us down.

Four weeks to our wedding day and I moved slowly, like life in molasses. My inbox pinged with the last of the medical opinions. We had been waiting for this final, the most important one as it reflected an exhaustive examination of current and previous scans by choice specialists. I wondered where they would net out, on the side of surgical intervention, or in the leaving it alone camp and just increase the chemo or go for more of the targeted radiation. I read the email.

“Reviewed all your films, treatment records etc. Bottom line there is no evidence of tumor progression.”

The tumor was not growing, I wasn’t going to die.  Everything changed, again.

I called Marty over and had him read the email. We laughed and looked stunned and sat motionless for a moment. Then I forwarded the email to everyone we knew and picked up the phone because sharing good news was a gift in itself.

While I planned for a wedding that would unfold in vignettes, I could never have planned for the incredible celebration, the joy, the gratitude and the love. Contrast is a powerful thing and our lives were full of it. The day was a triumph, not the solemn tribute I feared.

We signed our Ketubah while a circle of our closet friends and family sang and hummed and filled the room with harmonies.  We moved outside to the traditional Chuppah where guests had gathered around bountiful bars with a roaring fire in the fire pit softening the chill of a brisk autumn day. The reception under the tent was exhuberant. From Contra Dance to Hora our friends raised us up high on wobbly chairs and played out a scene from previous generations of Jewish weddings.

From the first dance to the last, the floor was packed, plates were full of spectacular foods and glasses emptied and refilled multiple times.

People commented on my glow more than my gown. I teased them,

“Radiation made me radiant”.

I know it’s cliché, but it was one of the happiest days of my life. I was so happy to be alive, happy to be marrying Marty, happy to be making our family official and happy to have our dearest friends and family within reach of a hug. Together we celebrated life and love.

Last week I went to see my Oncologist, Dr Nadine Tung. She said the tumor in the back of my skull was actually shrinking, the questionable spots on my spine were no longer there and with the exception of an area on my pelvis, the cancer for the moment seemed to be quiet.

Dr Tung attributed it to the oral chemotherapy I was taking and the CyberKnife radiation treatments from earlier in the year.

I attributed it to all the love, and to the prayers, and to the drumming, and dancing, and my friends, and my family, and to hope and to happiness. I suppose my doctors deserve a drop of credit as well.

We’ll never know why I developed breast cancer, nor will we ever know for sure what’s suppressing it at the moment. I guess I’ll just continue doing what I’ve been doing all along and that’s everything under the sun.

xoxomomo

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§ 14 Responses to love shrinks tumor and other miracles

  • Linda M says:

    That’s the Story of
    That’s the Glory of
    Love.

    May yours be everlasting.

  • Marilyn, Mazel tov!! Kudos for choosing love and joy. Your vitality, creativity and spunk are wonders to behold! Thank you so much for sharing your story. I send love and best wishes to you and to Marty. Love, Tracy

  • LB says:

    You are so full of love, life and creativity, how could it be any other way? What a beautiful tribute to Marty and Frannie. Love you.

  • shula kantor says:

    thanks for sharing. It was beautiful..Many years of happiness Shula

  • Barbara Terner says:

    Beautiful words that read like a novel. Making the best of each day is all we can do.
    Namaste

  • paula mills says:

    amen

  • Thank you thank you thank you for sharing your beautiful story of love, friendship, family, hope, determination and so much more. Congratulations and mazel tov. Love, Barbara

  • Best. Post. Ever.

    Congrats to you three! I raise my cup of green tea to a continued abundance of health, love & happiness.

    Hugs,
    Sue

  • Melanie Perkins says:

    Thank you for sharing your beautiful day, Marilyn. You are and always will be a force to be reckoned with. God Bless you, Marty and Frannie.

    xoxo,
    Melanie

  • Happy Birthday, Marilyn. I hope to be able to annoy you with these best wishes for many, many years to come.

  • Tami Boehmer says:

    This is perhaps one of the most beautiful stories I’ve ever read, and that’s saying something. My blog and book share stories like yours of cancer survivors who beat the odds. I would be honored to include an abbreviated version of your story on your blog and would love to talk with you. You seem like such an amazing woman! Feel free to visit my blog and contact me from there. Mazel tov on your wonderful marriage and your beautiful like you have together.

  • Holly Raynes says:

    Hi Marilyn,

    We met each other years ago when I was at Arnold and by chance I came across your blog. I am so deeply touched by your story and hardly know how to comment. I just want to say how happy I am that you are here and sharing your life with the people you love.

    All the best,
    Holly

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