"Running for my life- and for others..."

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By Gayna Marie


In 1995 I was knee deep in new relationship “bliss” with my (now) husband Liam. I had a lump on my collarbone, soft and squishy. I ignored it for many months. I felt well, and was living life to the full. My mother prompted me to go to the doctor’s, and they did the normal stuff- drew blood, told me it was probably nothing, especially when all my blood tests came back normal. Still, I was referred for surgery at King’s College Hospital, and just before Christmas in 1995, the lump was removed. According to my GP, they all suspected it was lymphoma.

After diagnosis and subsequent staging scans, they graded me as “ Hodgkin Lymphoma, 2A, nodular sclerosing” with a very bulky mass in my chest. I was treated with MOPP/ABVD over 6 months at King’s College, and then sent off to have follow up radiotherapy at St. Thomas in Westminster. The treatment was difficult, but I did not have any major problems and was able to carry on working as a teacher throughout my treatment, albeit on a part time basis.

Immediately following treatment, I became pregnant with my first son, Toby. It was amazing. I was warned that the treatment I had might render me infertile, so my husband and I were amazed and delighted that we would be able to have our own family. Two years later, we had our second son, Ben, who completed our family. Both boys are polar opposites- Toby is loud, lively, passionate, and loves to be around people. Ben is quiet, studious and gentle. I could not imagine my life without my wonderful kids. I have a successful career as a middle leader in a school, leading music. I work full time. It is tiring but hugely rewarding.

In terms of late effects of treatment, the first ten years were the hardest for me. In retrospect, I think I had severe anxiety and depression about my health and my future. Not knowing for certain if the treatment had worked or whether I would relapse had a significant impact on me, especially because I had small children. I bargained with God (and I am not even a believer) to allow me to bring up my children. I figured that if I got them through to 18, that would be good enough. My hypothyroidism was diagnosed in 1996. This was no surprise, as literally all the women in my family have rubbish thyroid function. More recently I have been referred to a cardiologist, as minor damage to my heart from the cancer treatment was picked up during an echocardiogram. I have also had an early menopause and take transdermal HRT which stops the symptoms and protects my bones.

Nowadays I still have a lot of anxiety about my health, but I am learning to channel that anxiety into healthful activities and a lifestyle that supports good health. Initially, following treatment, I was quite literally paralysed. I feel I went through the motions of living for at least a decade after my treatment. I look back with regret on those years. At 40, a midlife crisis of sorts happened. For years I had been overweight and I drank more wine than was good for me. I changed my diet dramatically, and decided to give up all animal products. I also stopped drinking wine and all alcohol. It was tremendously empowering to make a positive step for my own physical and mental health. I was completely in control of my own choices. I then entered a long distance walk- 20 miles, to raise money for breast cancer research. I trained for this every week- starting out walking a mile, then adding to it.

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It sounds crazy now to actually “train” for a walk, but I was so out of condition. By the time I did the walk, the weight was off and I was starting to think about running. I started the “Couch to 5k Running Programme” in the Christmas of 2014, and entered my first 5k race the following May. As soon as I completed it, I decided I would run a marathon and entered to run the Edinburgh Marathon the following year. Obviously, this was crazy, and not to be recommended, but I was super enthusiastic about it.  I started a 40 week training programme to get me running the distance. I also decided to raise a lot of money for cancer charities while in my 40’s through running. I completed the Edinburgh Marathon in just over 6 hours- it was the hardest thing I have ever done, but I was hooked.This year I am running the Manchester, Liverpool, London and York Marathons, all to raise money and awareness for the UK charity “Children with Cancer”.

Running has become a huge part of my life. All my friends are runners, and any friends I make who are not runners soon become runners! I am a “run leader” at Bodymode Running Club in my hometown (the best running club in the world),  and I firmly believe that running keeps my mind and my body healthy. It has helped me to redefine my place in this world and in my own head. I do not feel like a victim of cancer or a list of long term late effects when I am training. I do not feel like someone with a dodgy ticker when I can run faster than women who are 15 years younger than I am. Future plans for 2019 are to run my first “ultra “ event. Next year, I want to run my first international marathon.



"On finding a new way to eat, and getting a new lease on life..." by Karla Guererri

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(Disclaimer: The following is a narrative of the experience of an individual person and is not in any way intended as an endorsement, recommendation, or testimonial for any product or program mentioned herein)

“Come On And Let Me Know- Should I Stay Or Should I Go?” The Clash

“This is exactly how I was feeling about life three years ago. More than thirty years after radiation treatment- huge amounts of crudely aimed cobalt radiation to the mantle field- some serious late effects had come at me full force, one after another. My aortic valve was already under surveillance by the cardiac team when the breast cancer diagnosis came in. Over the next three and a half years, I underwent a double mastectomy, open heart surgery for a new aortic valve, and finally, a thyroidectomy. I was trying to hold my health together and stay afloat financially at the same time, performing contract work which barely paid for the health insurance and associated costs. I was sinking deeper into a bottomless hole.

Surprisingly, it was the thyroidectomy that nearly did me in. That operation was supposed to make me feel better by getting rid of a malfunctioning gland that had been taken over by a multi-nodular goiter and compensating for the function with a high tech, laboratory made pharmaceutical product. Instead, it sucked the life right out of me. Sleep became my default setting. In the morning, it took every iota of energy I could find to open my eyes. I would lie in bed, motionless, willing my eyes to open. First one, then the other. Could it have been like this for Lazarus? I would look at the clock. Sometimes it took an hour or so to get out of bed and another hour to get dressed and ready for two or three hours of tutoring students for the local school district. I wondered how I would ever survive, and I didn’t really care. I reasoned that I could credit myself with some satisfying accomplishments and I had a good life. My daughter was grown and my house was paid for. Maybe I would just grow weaker until I drifted away to whatever lies beyond. It seemed that it wasn’t even going to hurt. Should I stay or should I go? The scale was tipping in favor of GO.

Right around that time, I began communicating with the people in a closed Facebook group for HL survivors with late effects. Knowing that they were there gave me enough encouragement to make a conscious decision to hang onto life, even though I did not know how that would happen. The first step was to find a new endocrinologist. I knew that my most significant, fundamental problem was that I no longer had the gland that runs all the systems of the body. The replacement hormone prescription I was getting was not adequate, regardless of the numbers generated by my blood tests. I wanted to try “ArmousRThyroid, a non-synthetic product made with desiccated porcine thyroid, but my doctor refused, saying that the quality could be inconsistent. Feeling that I didn’t have much to lose, I set out to find a doctor who would listen to me. Ultimately, a referral from a friend got me an appointment with an endocrinologist who not only allowed me to try a new medication, but she listened to all of my symptoms and worked with me to find solutions. I started feeling more energetic and clear in my mind thinking within a month, but I was still bogged down with some extra weight that had begun accumulating after my thyroidectomy, and it was interfering with my mission to find my best health.

Again, my internet associates came to the rescue. Come to find out, many long term HL survivors have found better health through particular eating plans. Some swear by plant-based nutrition and others prefer the “Specific Carbohydrate Diet” or the “Whole 30 Diet”, among others. What made the difference for me was the “Fast Metabolism Diet” by Haylie Pomroy. (https://hayliepomoroy.com/products/the-fast-metabolism-diet) I bought the book and read it with interest, taking notes and planning my new life. I thought I had a clean diet before, but this was something else. 

First the forbidden list: coffee, tea, alcohol, wheat, corn, sugar, any and all dairy, and sadly, potatoes. It was complicated, requiring different foods in particular combinations at strict intervals on different days. After a week of trying to keep track of everything, I got an app for my phone to organize it all. And I began to feel like a living person again. I no longer gasped for breath, even when carrying things. I could think clearly and quickly without fighting through the brain fog. No more need for naps. And the added bonus was that I was searching the recess of my closet for my old clothes- two sizes smaller than I had been previously wearing.

Now, with almost 41 years of post HL life, I am very much alive. Those of us who have been irradiation and lived to tell about it know that we will never be “all better,” but every setback doesn’t have to be permanent, and health can always improve. 

I wish all of my HL sisters and brothers the best possible health in the New Year!”

 

"Climbing off the cliff face of ill health and fatigue" by Tess Nowell

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As we start a new year, I have been reflecting on the journey I have made over the past few years, which has taken me from struggling a great deal with health-related issues to being and feeling much healthier than I had imagined would ever be possible again. This is in the hope that some of what I have learned may be an encouragement and a help to others who are struggling with health issues.  We are all different and will find our own paths, but I have learned so much from others and adapted it to suit me. So how did it happen that I scrambled and struggled off that cliff face of difficulty, where I felt as if I was clinging on with my finger nails day by day, to the path which still goes up and down but is much easier to travel? I would like to share a few of the many things and people that helped me.

In 2013-14 I was constantly tired, working three days a week as a General Practitioner and doing the basics at home, but unable to do much else in life. I was quite often ill with chest infections. I also had nerve pain that affected my right arm and hand. I worked when I could, and sometimes when it would have been better to rest. Even so, I had to take a lot of time off in the early summer of 2013, which caused stress with my work colleagues and upset me a lot. As I approached fifty, I was wondering how much longer I could keep going with my job. I had no idea that so much of what I was going through was linked with the Hodgkin Lymphoma I had been treated for with mantle field radiation when I was just eighteen. I just felt rather sad and frustrated about the limitations.  At times I wanted to wrap myself in self pity and just give up, but that is not and never has been my nature. I kept going.

The first thing that helped was meeting a very supportive Occupational Health doctor who advised that my hours be reduced. As a result, not only was my working week more manageable, but I felt listened to and believed that I was having so many different health problems. The next very helpful thing, although it was scary, was finding out about ‘Late Effects” and realizing that that was my main difficulty. Luckily for me, I very soon discovered the Facebook support group ”Hodgkins Lymphoma/Disease Survival and Late Effects, 1960- early 2000’s” and realized that I was not alone. There were other people out there who kept getting sick and having problems affecting different systems of the body, and that made me feel both understood and again validated: I was not making this stuff up.

Through this very challenging time, I was blessed with amazing support not only from the Facebook “tribe,” but also from family and a number of good friends. They have taken the journey with me. It's hard to describe how valuable this has been. I’m very lucky indeed that my husband, whom I have known since before I had HL, has stuck by me and has tried his best to understand at every stage. Again, all these people knew that the problems were genuine, and several of them came with me to various hospital appointments and helped me to deal with the rollercoaster of reviews and tests.

I had so many medical appointments that I started counting them. Over the first three years I was averaging almost two appointments per week. It was a massive burden as I went through it (like having another part time job!), but it was worth it to get thoroughly checked out, and to understand where the issues lay and how to deal with them. Quite suddenly it seemed that I came through that time and now I would say my numbers of appointments are not at all excessive, sort of normal indeed!

My own determination to understand what was happening definitely stood me in good stead, and I have worked hard at physically rehabilitating myself. After the chest infections in 2013 I could only walk short distances, but gradually I built that up. I had a lot of physiotherapy, and I started Pilates on the recommendation of my physiotherapist and keep classes up to this day. I started to swim and even to enjoy it. Now I can walk as far as I want even if I am breathless on hills. I can cycle around town, and I can swim a mile even if it’s rather slow. I can also lift my head from the floor when lying on my back!

The psychological component of all this was huge. I had some help from a psychologist at the Oxford Maggie’s Centre (for people with effects of cancer), and worked through the past, present and future aspects of the Late Effects diagnosis. I learned "Mindfulness based" meditation.  I talked through things with my spiritual director and with trusted friends, finding them all to be compassionate, caring listeners. I learned about "Acceptance and Commitment Therapy (ACT)", and worked on understanding my values and how I could be true to them and live a meaningful and satisfying life, even if I was limited in what I could do.

There were other health care professionals who particularly contributed to my journey as well. I looked at fatigue management with an Occupational Therapist. With her guidance, I worked out some simple changes and strategies at work (where I had foolishly thought I could not make changes), and which massively reduced the fatigue. I was, after over two years, able to pick up my full work load again. I had not thought this would feel possible. I just spread it over three days instead of the two that my colleagues do. Work became enjoyable again instead of an exercise in somehow getting through it, and I am now planning to work until I am sixty unless circumstances change. 

I also had a Cardiologist who fully understood the possible damage from radiation and arranged for appropriate tests, explained the results, and was able to reassure me that the breathlessness was NOT heart related. I saw an Orthopedic surgeon who listened properly to me.  He went beyond simply using nerve function tests, and, against the advice of Neurology, performed an operation to transpose and de-tension my right ulnar nerve, and with very good results. Thanks to his sound clinical judgment, I now have more strength and less pain in my dominant arm and hand, giving me the ability to do so much more. My "Late Effects" oncologist is a clear thinking and compassionate man. His organized reviews and planning have been very beneficial. My own General Practitioner has been a tower of strength. She has calmly allowed me to discuss multiple problems at one sitting, offered support, understanding and encouragement, and been really good at treading that tricky path of being physician to a fellow physician. She and the oncologist between them have pulled the various threads of my medical story together and helped me to manage and to make sense of it all.

There have of course been many other special people along the way. Each of them felt like a foot- or hand-hold for me on the cliff face, and it felt as though my friends and family, including the online community, were like ropes holding me safe as I traversed the cliff face.

Now, at the start of 2019, I find myself in so much better shape than I believed I ever would be again. 

The main message I want to share is one of hope- that things can change. We can learn to care for ourselves and to have meaningful and fulfilled lives. Accepting my situation, being prepared to try doing things differently, and then living to honour my values has been transformational. We need to pay attention to our physical, psychological and spiritual needs. Getting knowledge and using it to ensure that we have the best health we can manage is important. Most of all, perhaps, we need community- love and support from others, whether that be through our online “tribe” or from family and friends closer by. I’m so thankful for all who have helped me and still help me in this way.

 

"Living through Faith, Grace, and Hope" By Lori Foist Thompson

Lori Foist Thompson

Lori Foist Thompson

Radiation therapy saved my life- but it damaged my heart.  Radiation therapy saved my life- but it threatened to leave me infertile. Radiation therapy saved my life, and it has given me LIFE – a life full of Faith, Grace and Hope.   

Three years ago, I celebrated another Hodgkin's Anniversary. Though I had never met another survivor in my many years of survivorship, I had some questions about some minor health issues.  My doctors couldn’t answer my questions with a valid answer- at least enough to satisfy my curiosity.  So I hopped on Facebook and began a search for anything  "Hodgkin's".   I found "Hodgkin's International" and the Facebook group, "Long Term Effects Survivors".  The dialogue and answers I had been seeking for so many years had been found.  I have spent thirty-one years on a journey and I finally discovered I was not alone.

On Halloween of 1987, I was driving home from my full-time job.  My neck was itchy, so I reached up to scratch an egg-sized lump on the right side of my neck.  "What is THAT?" I wondered.  When I arrived home I asked my mom, a licensed Registered Nurse, to feel the lump.  She turned white.  That next Monday morning, bright and early, I was examined by our family doctor.  We sat in the waiting room awaiting the x-ray results.  He brought the x-ray film right out into the waiting room (clearly before patient privacy mattered!) and held it under a light.  My chest cavity was white - meaning FULL of disease.  Within two hours, I was laying on a table undergoing a biopsy.  If it were not for my parents, I would have disappeared into a cave, never to come out again.  I was twenty years old.

The "local" biopsy was not successful.  Two weeks later, I went into surgery for a more precise biopsy.  The phone rang a few days later to let my parents know that my diagnosis was Hodgkin's Disease – the “good kind, not the bad kind” is what the doctor said, the one they could cure you from.  

My diagnosis of Hodgkin's was followed by a slew of tests: barium drinks, CT scans, a bone marrow biopsy and the awkward lymphangiogram that left pretty polka-dot tattoos on every toe, still visible today. The "staging laparotomy" to explore the extent of the disease and to remove my spleen was brutal.  I spent eight days in the hospital.  I remember a kind and gentle doctor coming into my room and sitting on the side of my bed. He said,

 “Do you understand what is wrong with you ? You have Hodgkin's Disease.  You have cancer. And I am going to take good care of you and get you well.”   

 After the Christmas holiday ended, I found myself lying on a cold, steel table. They were readying me for radiation therapy-  painting my face, chest and abdomen with cold, wet, reddish-purple paint.  The paint was a road map, telling the technicians where to place the steel blocks that would keep radiation beams from penetrating vital organs. I was told I couldn’t wash it off for a long while.  I looked like a warrior going into battle, and I WAS starting a battle- to undergo mantle and abdominal radiation treatments to rid me of the Stage 2A cancer that was attacking my body.  (Those steel blocks should have been stacked ten feet high).

I was twenty years old. I would be turning twenty-one in just a few months, in March of 1988.  I hated my life. I had no self-confidence. I was depressed. My friends were off going to parties, concerts and enjoying their college lives or their new jobs. And, while everyone tried to invite me to their gatherings, I had to turn down each one because I was too sick with the cancer to leave my home.  I celebrated my 21stbirthday staring at the birthday cake that my mom and dad bought me.  They tried so hard to make it special for me.  I didn’t care.  I just wanted to be normal again.   

I went through three months and four days of brutal radiation treatments.  The hospital was only five minutes from our house.  I absolutely HATED going into the cold, dark room where the radiation machine was waiting.  The technicians didn’t seem to waste much time feeling sorry for me.  It was just, "Lights… camera…ACTION!" I lost half of my hair.  I slept all the time. I could not eat. 

There were weeks that I developed "radiation poisoning" as the rays were adjusted to what my body could stand.  And my skin was burned.  Through all this, I truly had no idea of the magnitude of it all. There were no support groups, no Facebook groups, no websites.   I just remember the pain in my parents' eyes as I suffered through severe nausea and weight loss.  I don’t even remember the last day of treatment.  There was no celebration, no bell to ring.  You just left the building-  on your own.  For me, it was only a bad dream to escape.  And I did escape, cured of the cancer. It had been literally burned up. No more remained.  

In the following years, I just tried to live my life. I have no idea how I managed "emotionally".  Looking back, I know I never dealt with the fact that I was battling cancer.  Life just went on.  The only two after-effects I suffered from were extreme fatigue and tachycardia.  I married five years later and became pregnant in 1997.   I informed my new radiation oncology doctor (my original doctor had moved to New York to practice) and she hugged me.  She told me I was not supposed to become pregnant – that the radiation should have left me infertile.  WOW !

I gave birth to two boys. I lived my life healthy and full of energy.   Never looking back.  FAITH.

Until eighteen years later - 

Our eldest son, during his junior year of high school, was a track and field standout on the high school team.  He threw discus from a powerful right arm.  He was even offered a spot on a local college track team. He worked hard to get ready for his first track meet, enduring intense weight lifting in training. Right before he was to have his first throw in the meet, he had severe pain in his shoulder.  He threw the rock anyway.  He went down, and stayed down, in too much pain to get up. He ended up missing  several days of school that spring, unable to maneuver his arm and suffering from unrelenting pain. After long months of misdiagnosis and treatments with a chiropractor, our orthopedic doctor had a revelation only God could give him.  A week later, we were in the office of a pediatric orthopedic cancer specialist.  We were initially told it was a benign growth inside the shoulder and could be lasered out in a short surgery.  Once inside the shoulder for a biopsy, however, the pathologist stopped the procedure and said the cells looked “angry.”  They could not take a chance of lasering the growth, as they were not confident of its origin.  We waited eight days.  The biopsy confirmed our worst fear – cancer.  I was reliving my diagnosis all over again.  But this time it was worse because it was our son.  

Lori and family

Lori and family

He had Stage 1 B Cell Non-Hodgkin lymphoma lodged in his right shoulder. Naturally, my worst fear was that I was responsible – that he got it from me.   "Not true," said our oncologist.  Within two weeks of the diagnosis, we were setting up online classes with the principal, celebrating his eighteenth birthday, and beginning six chemotherapy treatments.  On a hot summer evening after his first chemo, I stood on our back porch and tearfully shaved my eldest son's blonde curly locks.  His hair was already beginning to fall out.  As hard as it was to do, it was my way of acknowledging the common bond that we now shared- unwanted, yes, but it no longer mattered. We would fight this together. 

That December, he was declared in remission.  He has since gone on to use that shoulder to its fullest – participating in white water kayaking and mountain climbing with "First Descents", a non-profit organization for young adults ages 18-39 that provides outdoor adventure for cancer patients. (If you are curious about this organization, please feel free to email me).  We all wonder why we had Hodgkin's, and maybe we will never know.  But this much I do know: I think I had to have cancer first so that I could get my son through his own diagnosis. GRACE.

Three months after my son was pronounced "cured", I went for my annual OB/GYN appointment. My doctor listened to my heart as part of the exam.  Her face turned white and she backed away.   She told me I had a very loud heart murmur.  She was concerned and instructed me to see my family doctor the next day.  I followed her advice and went to the cardiologist's office for an examination and testing. I was told I had "severe aortic stenosis", no doubt caused from mantle radiation.  The radiation that saved my life had damaged my heart and had calcified a major artery.  The doctor said that I had less than six months to live.  "How does this happen"?  I thought to myself. We had just been through hell with our son.  Now this.  

I tried to negotiate with the doctors – after all, we just finished the worst part of our lives and my son was a senior getting ready to graduate, and our youngest son was getting ready to start his travel soccer season.  I didn’t have time for open-heart surgery and recovery.  The cardiologist said that if I ever wanted to see my son play soccer again, that I would have the surgery right away.   I told the heart surgeon on my 50th birthday,   “Just promise me I will be at my son’s graduation".  He said, "I will get you there".  My husband and I left his office in shock.  The next stop before getting home would be to buy me a birthday cake from my favorite German restaurant.  After all, might as well drown the shock with chocolate and icing!  FAITH OVER FEAR.

I had open-heart surgery on March 22, 2017 in my hometown of Indianapolis.   The trauma from surgery caused large amounts of fluid to take up permanent residence in my lungs.  As a matter of fact, it's such a hospitable place for the fluid that it refuses to leave!  After several thoracentesis procedures I was given a diagnosis of "trapped lung".  There is a surgery to reverse the condition, but I choose not to undergo the surgery.  The reality is that my lungs are permanently damaged from the mantle radiation.  (Which is EACTLY why they needed to protect my lungs with STACKS of steel blocks rather than just two)!  I am currently stable -  living with fluid in my lungs that is controlled with Lasix. I've found that keeping active is the best treatment.  Not going backwards, just looking forward is my goal.  HOPE.

Through all this, I feel like I am now walking out a cave.  The cancer events have left me with minor PTSD but also with a new realization that life is fragile, that things that seemed so important two years ago now seem trivial.  You can’t explain all this to another person who has not been through these experiences.  They just don’t understand.  I am content to stay in the presence of my family, my close friends and others who have been on this journey with my family and me.  I feel everything is a moment now, and I want to live with urgency.  I have to remind myself to slow down and take one day at a time because the urgency moves faster than my body will allow. 

I found Hodgkin's International about three years ago.  I also found Facebook support groups for long- term survivors of Hodgkin's Lymphoma. I read about what others like me were going through. I got as much information as I could.  I thought the heart valve symptoms would never happen to me.  I started posting on these sites after I was diagnosed with the aortic valve issue.  Such support came my way!   I am forever thankful for these groups of survivors that walk alongside me. I hope to meet you someday. 

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I hope to meet other survivors in my local area.  I hope to be a voice in the medical community. I always wonder if other Hodgkin's Lymphoma patients came through the same hospital that I did, needing the same surgery I did.  I wonder if they are alone, not knowing that there are others out there who could help. We truly are a unique community of survivors.  HOPE.

I close this article with encouragement.  You can choose to live your life in fear thinking all the late effect symptoms will come to you.  But don’t live in fear.  Our son is two years in remission now, doing amazing things with his life.  I am 31 years in remission this April.   I feel pretty good.  I’m not the same – mentally or physically.  I am continuing to become familiar with the new person that I have become because of cancer.    Please embrace your life and what God has given you.  I’m overwhelmed by God’s grace.  Be unshaken and move forward.  Choose Faith over Fear.   FAITH, GRACE and HOPE!

Lori can be reached at : Butterflygarden16@gmail.com     

 

 

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

Erin can be reached at: erincummings@hodgkinsinternational.org

 

"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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Erin can be reached at: erincummings@hodgkinsinternational.org

 

 

Sandi's Story- by sandi liberatori

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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- by leslie lomot

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.