Who Will Love This Broken Body?

By Erin Geddis Cummings

I can't imagine that there would be a “good” time in one’s life to have cancer, but I CAN say, that from personal experience, the teenage years isn’t one of them.

If, as a teen, you were not already wrestling with “negative Body Image,” a cancer diagnosis would get you there Pretty damn fast.

I was diagnosed with Hodgkin Lymphoma when I was fifteen, in the summer between my freshman and sophomore year of high school. I had finally begun to shed the baby fat that had stubbornly clung to my stomach and upper thighs- the extra poundage that had forced me to shop in the "Chubette" section of clothing stores (and yes, there really was such a department). After years of sporting a short "PIxie" bob, I had begun to grow out my hair for the first time, impatiently awaiting the day when it would be long enough to toss over my shoulder or draw up in a pony tail. The shape of my face was finally catching up to the size of my teeth, which seemed enormous, slightly crooked, and were laden with silver fillings. 

Fall, 1971- Nine months before diagnosis

Fall, 1971- Nine months before diagnosis

Despite all these promising developments, I bore the appearance of a young woman who hadn't developed at all. I was, as they say, "flat as a pancake." I was horrified by my boyish figure. While the other girls were bemoaning the sudden explosions of their chests, I was frantically looking for a bra with a "Negative-A" cup. 

I spent hours in front of my small bathroom mirror, hunting for blackheads, trying to come up with ingenious ways to straighten my wavy, unruly locks (rolling it up in empty orange juice cans, wrapping it around my head and taping it to my face), and dithering over whether or not I needed a nose job. As hard as I looked, I found few redeeming qualities in my appearance.

October, 1972- Six weeks into Radiation Therapy

October, 1972- Six weeks into Radiation Therapy

While hearing someone say, “You have cancer” should have been a sobering, “Come to Jesus” moment for me, it actually made me hate my body even more. Yes, I was terrified of the cancer, but the process of diagnosing my Hodgkin's and then treating it created a whole new opportunity for feeling inadequate. There was surgery, radiation, and chemotherapy, all designed to cure me, but not without leaving a permanent trail of destruction.

Thanks to the "Staging Laparotomy," I had a scar that went from breastbone to pelvis, hooking around my naval and resembling a raw, red, upside-down question mark. Now that I could finally stuff myself into a bikini, I wouldn't be caught dead in one- literally.  Radiation treatments to my neck made some of my hair fall out. I had hair on the top my head but nothing from the middle of my scalp on down.  Later, when I started chemotherapy, much of the remaining hair fell out anyway.

Instead of picking out the right “Cover Girl” makeup for my natural skin tone, I searched for something heavy enough to hide the yellow complexion induced by a steady stream of chemotherapy drugs coursing through my veins. Nothing short of compound joint spackle would do the job. While my female classmates were tying ribbons around their tresses in colors that matched their outfit of the day, I was waking to the sight of my hair in clumps on my pillow. In short, my entire "image" could be summed up as a "Glamour Don't.” I was the perfect example of how NOT to present yourself to the outside world-  as if you were destined to walk around with a permanent gray box covering your eyes in order to hide your true identity.

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And all the while I thought, who will love me now? 

Who would be attracted to a girl who was balding, rail thin, and looked like she was dying? And why would you want to waste your time with someone who was clearly sick? Talk about a party pooper! I tried to imagine being asked out on a date-

"Want to go to the movies?" he would ask.

"Sure!" I would say. " Just have to throw up first. But as soon as I vomit my brains out I'll be as good as new!"

Never mind the fact that in those days, people still thought you could "catch" cancer-  like the flu. I could just hear the parents of my would-be date saying, "Yes, you should be nice to the poor girl. Just don't hold hands, or for God's sake, kiss her or something. You never know what could happen!"

No, it was highly unlikely that someone could ever fall in love with me.

I got lucky, however. I did end up having a high school boyfriend. He was someone who managed to love me despite knowing how sick I was, someone who made me laugh through my tears, someone who was happy to go along with living one day at a time.

Adulthood turned out to be much more complicated.

The dating life of a cancer survivor can be tortuous. It is often marked by one burning question-

“To tell, or not to tell”. That IS the question.

Do I tell this guy/woman I had cancer? Do I tell him that I can’t guarantee I won’t get it again? Do I tell him I have disfiguring scars, or let him find out for himself? Do I tell him that I may never be able to have children? Do I just let it spill, apologize for my damaged body before it’s discovered, test him to see how he reacts? Or do I let myself fall in love first, hope that he’ll love me in return, and that he’ll be able to get past all that once he really gets to know me?

There were times when I used my cancer history as an excuse to keep someone from getting too close. There were also times when I watched someone physically recoil at the sight of my scars, or when I told them that I had Hodgkin’s. There were times when I wanted to blurt out Jack Nicholson’s line from “A Few Good Men-”

“You can’t Handle the truth!”

It wasn’t just dating. When out with a group of friends, I worried that I wouldn’t be able to keep up with everyone else, and sometimes I just couldn’t. I would make some excuse and try to bow out quietly. I didn’t want to have to explain. I didn’t want others to think of me as sick or fragile. I just wanted to be “normal,” but I had no idea how to get there.

When I met my future husband, Rich, I opted for full disclosure. I knew in an instant that he was “the one,” and I told him everything- on the first date. He didn’t blink. He’s STILL not blinking, and thirty-five years have gone by now. They have not been easy years. Rich has seen me through infertility, open heart surgery, mastectomies, lung surgery, and a host of other health issues and hospitalizations all related to the long-term effects of my earlier treatment. Forty-six years after diagnosis, I now have several replacement parts and a slew of new scars. Seen together, they read like a road map of where I’ve been and what I’ve done to survive. How lucky I am that this man continues to believe in me, to love me, “warts and all.” The real question is,

“can I still love myself?”

There are days when I look in the mirror and don’t recognize the girl I once was, and it’s not just that I’m getting older. I don’t remember what it feels like to be “whole.” In spite of all my teenage angst about my numerous flaws and imperfections, I always felt that I was in one piece. I sometimes miss that girl.

For the most part, however, I am proud of my body, of who I am and what it took to get this far in life. As for the scars, I have learned to see them as symbols of courage, as though each one represents a notch in the belt of fortitude and resilience. Some are faded, some are fresh, but each one has its own story, and together they make up me.

The truth is, I do love this broken body. Warts and all.

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New York City Marathon, November 2016

 

 

 

"HE WHO HESITATES MIGHT MISS THE CHANCE OF A LIFETIME"

                                  By Erin Geddis Cummings

 

I have always thought that hospitals might be a bit like prisons. 

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Everyone wears the same uniform-  patients AND staff. The food is largely inedible (though scanning the menu is often the most exciting part of the day). You can't choose your roommate. Visiting hours are restricted. You really can't leave whenever you want to. You are tethered to your bed by an IV, almost as though you were in shackles. If you move a muscle, an alarm will sound, and the guards will come rushing in. You don't get much sleep, you are dependent on complete strangers to assist with the most basic bodily functions, and you are usually counting the days until you are freed. When you are, and you get your first gulp of fresh air, you vow that you will never go back.

In May, 2007 I was hospitalized at Massachusetts General Hospital for lung surgery.  It was not my first "rodeo." I had been a Hodgkin's survivor for over 35 years at that point, and I had done my share of "time" in hospitals. I needed a biopsy to determine if the nodules on my lungs that were slowly multiplying in number and growing in size were malignant. I went into surgery not knowing if I would reemerge with two lungs or something less than that. I was lucky- my nodules were benign-  likely the product of scar tissue from cobalt radiation.

On my last night in the hospital, I wandered down to the Family Waiting Area-  the common room at the end of each hallway where families rarely met but staff frequently lunched (and inevitably when I was NPR-  as in no food for hours. As in STARVED.)  I stared out at the Boston skyline, clutching my hospital gown to my waist in a feeble attempt to avoid exposing my derriere, and browsed the intellectually stimulating rags, such as "In Touch," "OK," "Entertainment Weekly," and the gold standard, "People Magazine."

I had just settled into a gripping article about the Kardashians when a woman about my age was wheeled into the room by her family. She was swathed in hospital blankets. Her neck was covered by a large bandage. We nodded to each other. After a few minutes, she joined me at the floor-to-ceiling windows. Prison talk commenced.

"So.... what are 'ya in for?"

"Me?  I'm doing five to ten for possible lung cancer. Turned out to be a misdemeanor. Benign. You?"

"Esophageal cancer.  But they got it early.  I'm getting out tomorrow for good behavior."

"Sucks, huh?"

"Yeah. Sucks big time."

She introduced herself as "Donna," and, while her husband and two adult children made themselves busy, clearly half-listening, we dove into what got us here to begin with-  the origin of our "crime."

"So why did they think it was lung cancer?" she asked.

"Well," I said, "It's kind of a long story. The truth is, I had Hodgkin Lymphoma when I was a teenager.  It's a cancer of the lymph system...."

I didn't get to finish the sentence.  Donna's face began to crumble. Her eyes widened as if she had seen a ghost.

"Oh my God. You had HODGKIN'S??" she said, almost as a whisper.

"Yeah" I replied, shrugging a little, unsure why she reacted so emotionally. 

"SO DID I!" Donna exclaimed, loud enough to cause her family to literally jump off the couch and join us at the picture window.

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"Oh my God. You're KIDDING, RIGHT? For REAL?  I don't believe it!" I said, and we reached forward to embrace each other, laughing and crying at the same time, unable to comprehend what had just happened. 

I had never met another adult survivor of Hodgkin's. Neither had Donna.

What followed was a completely improbable "Tale of Two Cities." As it turned out, Donna and I had almost the EXACT same medical history- diagnosed as teenagers, cobalt radiation and MOPP  chemotherapy, Thyroid cancer, and heart disease. We both had open heart surgery to have our aortic valves replaced-  by the same cardiac surgeon at Massachusetts General Hospital. We shared the same thoracic surgeon. He had just operated on both of us within hours of each other. 

Donna's family had heard every word of the conversation and were every bit as dumbfounded as we were. Everyone was in tears. Donna's daughter finally spoke up and said, "Mom- you guys have GOT to exchange numbers. You HAVE to see each other again and stay in touch." 

We grabbed the only thing that we could- a paper napkin that was left on a side table, tore it in two, and etched our phone numbers in pencil (the only writing tool allowed in prison.)  After a few more minutes of exchanging stories and gabbing as if we were already old friends, we both returned to our rooms, exhausted but elated. We would see each other soon. We would give ourselves a few weeks to heal, and then we'd meet again.

Back at home, I dove into my old routine, chasing after kids and tending to the small horse farm that was my dream home. As my surgery was minimally invasive, I recovered quickly. I knew that Donna had a tough job ahead of her, especially if she needed more chemo, so I decided to hold off on contacting her. She had my number, so she could call me when she was ready.

In the meantime, I added esophageal cancer to the growing list of possible secondary effects from my earlier treatment. I hadn't known about that. One more thing to be terrified of. There were many days when I wondered what would "get" me in the end. Another cancer? A heart attack? Pneumonia? How could I possibly live a long life with all the things that were threatening my survival, waiting in the wings, ready to pounce when I least expected it?

Weeks passed. Before I knew it, the fall was upon us, and I had not called Donna, nor had she called me. I decided I would try to contact her.  That paper napkin was tucked away in a safe place. I just had to find it.

I spent hours searching. "It must be somewhere," I kept saying.  "It didn't just disappear. Please God, after all these years of having no one, please don't let me lose this person. She's the only one I know."  I finally resorted to calling the hospital.  Of COURSE they couldn't tell me anything. Donna's personal information was protected by HPPA.  I should have known that. I kept looking.

Finally, on a dreary December day, when I was LITERALLY cleaning out a sock drawer, I found it.  Hidden underneath my trusty argyles, I spotted that meticulously folded treasure-  my "Donna Napkin."  I raced downstairs to grab my cell phone. I dialed once, got that metallic "This number is no longer in service" tone, and then dialed again.  Same thing.  "OK, it's been a while," I thought.  "She's probably changed her cell number".  I had a last name, so I could just try the White Pages.

I booted up the computer and typed in her name and the town she lived in. "Easy peasy," I thought to myself.  "I'll have her on the phone in a matter of seconds. It will be SO good to hear her voice again."

The first thing that appeared was an obituary with Donna's full name. "Well, THAT'S a mistake," I said out loud. "THAT'S not her." Hadn't I just seen her?  She was fine! She said she had a good prognosis! This must be someone else.  I typed her in her name again.  Same thing. This time I kept reading. It was her. It was Donna. She had died two weeks earlier.

I could swear that someone had punched me in the stomach. I felt sick. I sat there, staring at the computer screen, willing the words to change into a more acceptable truth. They didn't.

I sobbed as though I was trying to rid myself of something-  as if I could get to the bottom of my grief by purging every last tear-  as if, after 35 years, I could get to the end of feeling scared and lonely.  

I sent a condolence card to her family, saying, "You may not remember me but...," knowing that they would most likely not have a clue who I was. It had been six months since we had met each other. 

A week later, I got a phone call. It was around dinner time, and I immediately assumed that it was a telemarketer.  I didn't even try to hide my irritation when I answered.  "Hello! Who IS this?"  I practically yelled into the phone. "Is this Erin?" a man responded, somewhat shyly. "Yup," that's me!" I retorted, and the shy voice said,  "Erin, this is Tom. I'm Donna's husband."

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What followed is still somewhat of a blur, but I remember that I started to cry right away, as did Tom. I couldn't control myself. All the wasted moments, the things left unsaid, undone, the raw guilt of being a survivor when I didn't deserve to be, it all came to a head.  I listened to this poor man mourn the loss of his wife while I stood in my kitchen, wishing that a hole in the floor would open and swallow me up.

Tom told me that Donna HAD thought of me, that she wanted to call me. "She talked about you several times," he said. "She was so happy to have found someone else, just like her. It meant a lot to her to have met you. But, more than anything, she didn't want you to be scared by what was happening to her. The chemo didn't work, and she just got sicker. We actually pushed up our daughter's wedding so that she could be there. It all went too fast. Much too fast."

We talked for a while longer. He said that it had been hard to talk to people, especially his kids, because it was still so raw.  I just listened.  I was really just a stranger to this man, but there was something about my having had Hodgkin's that must have made him feel as though I would understand. And I did. Of course I did. 

Donna was the first long-term survivor of Hodgkin's I ever met. And while I never had the opportunity, the pure GIFT of getting to know her better, she lit a fuse in me.  She gave me the determination to find others who might be "out there," wondering if they are alone, wondering if there could possibly be anyone just like them.

There are. Aren't we lucky? There are.

We have each other. 

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Sandi's Story-

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As a school kid, I loved historic novels. One of these novels was "Hiroshima," the story of survivors of the atomic bomb which was dropped on that city. I was horrified by what occurred, but also morbidly curious. For years, I followed stories about the survivors, and what happened to them years later due to radiation exposure.


I never would have guessed that the information, to which I exposed myself, would someday have meaning in my own life, due to my “exposure” to radiation. Such a strange little coincidence. 

In 1983, I was a law student, home visiting my family during a break. As I was playing with my necklace, my fingers touched something on my neck. It felt like a golf ball. My Mom and I were in shock when we realized we could see the “lump.” My Mom wanted me to wait a bit, thinking it would disappear. She was hopeful and scared. I was just plain scared. “I will not wait---I am getting it checked out NOW!” Little did I know that, down-the-road, these words would become my mantra when dealing with any weird physical or mental feeling I had.

My small town doctor and local hospital confirmed my worst fear after surgery. Weirdly, I remember coming out of the biopsy and overhearing a few nurses talking about me in the recovery room. They said something like “she is a cute, young thing.” (Um, really…in the recovery room?), followed by something like “poor thing. It looked suspicious.” And I was off on the roller coaster that IS cancer. CANCER! That’s all I heard; that’s all I knew. Hodgkin’s Disease meant nothing to me at that time—never heard of it. The doctors in my small town had, by coincidence, only seen it once before---misdiagnosing a young patient at first because it was rarely seen. They caught mine because they missed her’s.

Then, another weird coincidence; I had a call from my law school Dean. She revealed to me that one of my law professors, a popular, young wunderkind, also had Hodgkin’s Disease. A dynamic, entertaining, and sometimes sarcastic professor in class, he reached out to me almost shyly and offered advice. His story was that he was lecturing at another school, when he realized that he ran out of breath and couldn’t keep speaking. His Hodgkin’s tumor was pressing on his windpipe. As an attorney AND a former medical student, the professor naturally was an avid researcher. He told me that when he realized he had read medical journal articles about the disease that his oncologist never heard of, he quickly made a change. He researched and found a  young oncologist at a major cancer research hospital in the same city and made the switch. “Go to him—mention my name,” he told me. I did, and I remain eternally thankful to the professor for that very valuable referral to my oncologist. Thirty-five years later, he remains my primary oncologist and the “band-leader” of the team who deal with my late effects from the lifetime dose of radiation I received.  

Radiation cured me of Hodgkin’s but set me up for my own "Hiroshima".  I have had endometrial cancer (hysterectomy); breast cancer (bilateral mastectomy); kidney cancer (partial nephrectomy); gall bladder removal, blood clots in the lungs, multiple basal cell carcinomas (removed in a variety of ways); carotid bruit; and subclavian artery stenosis (right side). I am sparing you a lot of the gory details. Suffice it to say, I have been through a lot. Are all my problems related to radiation treatment? Who knows? But I have had an awful lot of problems that didn’t seem to happen to my own parents until they reached their late 70’s, and I am not there yet; (I am a 35-year survivor at age almost 62).

Radiation saved my life, but might kill me in the end. Nobody gets out of this life alive, right? I don’t regret my choice to go through a tough treatment. I'm still alive. I know of other Hodgkins patients who were not as lucky. I graduated law school, got married, had two beautiful daughters, and lived a normal life for about 20 years or so after treatment.  

Twice a year for many years, I head to the city for my check ups with my oncologist, in fear and anxiety, which I now recognize as probable PTSD.  I know there have been other effects on my career and my family, which of course makes me sad. When my primary care physician asked me about depression, my response was, "After all this, who wouldn't be depressed?" But my depression made me reach out to this wonderful group of Hodgkin's survivors online. Hearing their stories, I no longer felt like a medical weirdo or a hypochondriac. This connection, that has turned into "Hodgkin's International", has helped me tremendously.

Still living and looking for coincidences!

Sandi Lieberatori

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Leslie's Story-

Leslie Lomot was just thinking....

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It was 1977 and I was fourteen. We had just gotten back from a year abroad in Israel, living on a kibbutz. Yes-  that was my crazy family, who left the United States, lived through a war, and came back because it was "safer."  I remember getting diagnosed like it was yesterday...being sick, not knowing what it was....then finally a diagnosis..."Non-Hodgkins Lymphoma." At 14, all that mattered was that I could go to school, be with my friends, gossip....but in April 1977 everything changed. Radiation, chemotherapy, hair loss...MORE chemo....then, after what seemed like an eternity...CURED. It was over....or so I thought. Thank goodness I didn't know it WASN'T over. My hair was back, I met a boy, went to college. Things were good....or so I thought. My mother nagged me to get check- ups. "Why?" I would say, it was OVER! Or so I thought....But I got check- ups, got married, had two children....STOP nagging me to get check-ups! Thank goodness she persisted....my mother saved my life more than once. 1999....Something was wrong....oh Goodness! That Adriamycin did my heart in....It took a year to figure out the medicine....No more running. OK, I can do this. 2001....breast cancer....very early stage....get those breasts OFF! OK, got through that....I can do this...What is happening? I feel like I'm falling apart! But I can do this. 2014... now months of passing out...what is W'RONG? Brachychardia! Then, a life changer....sarcoma! Finally, I understand the late effects. Really???? Thirty years later......my body is falling apart, piece by piece.....But it doesn't do me in all at once. It's a slow, progressive illness....chronic. My life was saved in 1977....but my life was altered too. The journey is one I never would have picked....but then again, I am here to share with you. Thanks Mom, for nagging me.

Mitchell's Story-

It was the spring of 1973. I was in college, following a few years in the Service and I didn't quite feel like partying with a sore throat and fever. After a couple of weeks of not feeling better, I was sent to the local hospital for "some" test. The first morning in the hospital, I was awakened by a medical technician. When I opened my eyes, I saw this beautiful young girl asking to draw my blood. I thought to myself, "If the food in this joint is half as good as she looks, I think I'll hang around here for a while!"

I was diagnosed with "Hodgkin's Disease," stage 2B. They immediately started me on cobalt radiation, every day for two weeks, as an in-patient. I was sent home for another two weeks before I would get the second round of radiation. While at home, a node grew under my left arm, and it was surgically removed right away. Realizing the radiation wasn't working, I was started on a once month "experimental" chemotherapy protocol, for a total of six months. It worked! I have been cancer free for over forty-four years!

This cancer, although gone, has come with some extra "baggage." For twenty-seven years, I was as "normal" as one could be. I played a lot of tennis, ran, ate and drank, and had a full life. In 2000, I was told that I had a bad aortic valve. After passing out on the tennis court, I had open heart surgery and was given a mechanical valve, which meant I would be on Coumadin for the rest of my life. I went back to my old routine of playing tennis and eating and drinking at my pleasure.

In 2011, I was playing (you guessed it) tennis when I started to feel weak and light-headed and had to (reluctantly) stop my game.  I told my cardiologist what had happened and he ordered a cardiac catheterization. I thought that maybe it was my mitral valve that was now the problem since that had also been radiated. I ended up being in the hospital for a month. That was the closest I had ever come to "checking out." There were so many complications, all due to the scarring from cobalt radiation. I needed a miracle.

I was lucky- I got my miracle, and from a miracle doctor, Dr. Omar Lattouf. I ended up having triple bypass surgery. Dr. Lattouf not only saved my life, but he included me in his book, "Heartfelt Stories: The Life of a Heart Surgeon." My "fifteen minutes of fame!"

I have slowed down a bit in recent years, but I will be 70 in December-  so I"m allowed! And, by the way, that medical technician that drew my blood way back in 1973? Her name is Rose, and she has been my wife for over forty years. Rose is my angel. She has made me the richest man in the world. Just think...if I never had cancer, I would never have met my beautiful wife, Rose. God is good!

Mitchell Massaconi

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Nancy's Story

Nancy's Story

I was diagnosed with Hodgkin's Lymphoma twenty-six years ago and was treated with radiation therapy. I am now fifty-two years old. I had a recurrence of the disease twenty years ago, which required ABVD chemotherapy. In the years that followed, I have gone on to live my life as a wife, mother, sister, friend, and co-worker. I became a nurse and worked in hospitals and healthcare companies for about twenty-four years.