Barry Mendenhall

Barry Mendenhall

You were diagnosed with Hodgkin lymphoma at age five. Are you aware of anyone else being diagnosed that young?
No. That was 1969; medicine has improved so much that I wish it would have happened to me today instead. But 54 years later, I have no complaints, because I did get treatment, although it was experimental. They said to my parents, “We’re going to try,” but they didn’t give me any chance of survival. When I left the hospital after a three-month stay, they said: we hope he makes it to ten. Later, they said: we hope he makes it to 18. When I got to 18, they said: we don’t know. I beat the odds then, and I’m beating the odds today.

Do you remember what happened when you were five?
I recall the day my mother had either an Avon or Tupperware meeting at our house in Fortuna, California, and I came running through the room. One of the ladies said, “Barry, stop!” She saw a lump on the right side of my neck. The next day we went to the doctor’s office, and I was diagnosed with mumps. That went on until my family decided it wasn’t mumps. The doctor cut some tissue out and sent it in. The next thing, he called and said: you have Hodgkin’s disease, and you need to go to San Francisco. I didn’t know what it was, but I understood I had cancer.

We drove seven or eight hours to Mount Zion Hospital and met with Dr. Alan Schroeder. I didn’t understand what he was talking about, but it involved cobalt radiation. That was just the start. I had seven surgeries while I was there. My parents had to leave me; my dad worked, and my mom needed to take care of my brother and sister. There were three kids in my hospital room, all on IVs. Several kids on the unit passed during those three months.

What happened when you got home?
When I walked in the door, my sister said: that’s not my brother. I had changed physically; I didn’t have hair on the back of my head. But my parents never talked about it, didn’t protect me and said: go be a kid, be yourself. I had a lot of energy, like any five-year-old, so I was playing sports as soon as I was strong enough. Sports were a huge deal in my family; my dad was a baseball pitcher and basketball player, and my brother, Garry, was an all-conference basketball player at Santa Clara University. He’s six-foot-three, and I was supposed to be tall like him–if not taller. But having my thyroid irradiated stunted my growth. I was going to play baseball at Santa Rosa Jr. College, but my health didn’t allow me. It took a while to figure out that my lungs had deteriorated.

I started coaching, including basketball at the University of Idaho and at Piner High School back in California. I got college offers, but every time I had an opportunity, I got hit with something. I had a heart attack in 1991, when I was 28. But I came back and coached at Saratoga High School and West Valley College. I kept having health problems, and I kept bouncing back. My cardiologist called me Mr. Indestructible.

Were there more late effects to come?
Yes. I was working with special ed kids, something I did for years, which involved walking to parks and different places each day. But then I couldn’t walk very far, and my arm was ice cold. None of my doctors could figure it out, but I thought I’d had a stroke. They finally saw that one of my carotid arteries was closed, and the subclavian arteries, which go down your arm, were blocked. I had surgery to open the arteries; 20 minutes afterward, my surgeon checked on me and said: the bypasses are failing; we’re going back to the OR.

Six months later, I was working at a high school and, during the middle of class, I nearly dropped to my knees. I called my doctor and described what happened; the next day, I drove to San Francisco and was back in surgery. We figured out my body was rejecting the plastic they used in the bypasses. Now I have at least 15 stents in my heart and carotids. They’re afraid to do a coronary artery bypass, but I’m not afraid. I had seven surgeries when I was five years old.

At this point, I’m in poor health; I’m on oxygen full-time. I fell at a friend’s house and had to go to the emergency room, where they took an x-ray and found a tumor on my kidney. They did a procedure and are checking me every few months. I have my limitations; I understand that. I used to be the most active person you can imagine. I’m glad I got to do those things. But now I’m sedentary. I can’t walk far; I throw the ball to the dog, and then I have to come home.

Have you become a bit philosophical over the years?
I think I have. I’ve had some disappointments, including that there was no follow-up from the hospital–not one word–despite the amount of radiation they gave me. In 54 years, no one got in touch to say “how are you doing,” “are you having any health problems” or “we’re conducting a study.” I don’t blame anybody, but I’m sad about that.

I always wondered what happened to my doctor. Four years ago, I looked for him. There were three Alan Schroeders in California, so I took a chance and found him at home, trimming his hedge. He was 92. I said: my name is Barry Mendenhall, and he said: “Oh my God.” I hadn’t seen him since the 1980s. When I went to shake his hand, he said: “I’d rather have a hug.”

My best friends today are the same friends as when I found out I had cancer. I never found the woman I love when I was younger; I was always sick or something was going on. About 15 years ago, I met Mamie Galliani, and we live together in Eureka. She is so important in my life. My father is 82; we talk most days. My mom passed a few years ago, but she got to see me grow up. My grandmother was a second mother to me; she was a strong influence in my life. I lived with her during her last few years when she was dealing with cancer. She lived that life–where, if you give, it will come back to you.

​Cancer started in me at a young age. I had successful treatment, but the cancer has never left me, and it’s still messing with me today. The older I get, more and more people call me to say: I have cancer; what should I do? The first thing I tell anybody is: be positive. You have to move forward. It would be easy to be depressed, but that’s not me. I’ll tell you a thousand jokes and make you laugh. That’s me.

Rick Aaron Rubin

How did you find out you had Hodgkin lymphoma?
It was a ragged road to my diagnosis. My wife, Marilyn, and I had just returned from Italy, and I started having sweats and chest issues, including coughing. I went to my doctor; his best guess was pneumonia. But my wife, who had worked as a lab tech, saw the results of my blood test, realized my hemoglobin was low and suggested I see a hematologist. At the John Theurer Cancer Center, which is affiliated with Hackensack University Medical Center, they performed more blood tests, including of my bone marrow. Still no diagnosis. When my symptoms got worse, they performed a PET scan, and I was finally diagnosed with stage 4 Hodgkin’s. After two months of seeing different doctors, it was official.

Did you head into treatment?
Yes, chemotherapy started immediately, 12 rounds from September to March. Although I was zonked and tired and nauseous, I’ve always lived my life with positivity–I’m a born entertainer who performed on Broadway, on the Catskills circuit and emceeing corporate events. I decided to connect with all the nurses and bring joy to every session.

When the chemo was over, a PET scan showed that I still had Hodgkin’s. At that point, I had a bone biopsy that was sent to the NIH. My case was reviewed by specialists at top hospitals, including Memorial Sloan-Kettering in New York. They decided to start me on immunotherapy, which had just been approved. I went into remission that summer.

That was the news you were waiting for.
Yes, but my oncologist said: We want you to take another step–that is, have a stem cell transplant. It would be autologous, meaning they would harvest my own stem cells. That was the easy part. Then the daunting process began, with intense chemotherapy every day for one week; this completely removed my immune system. When they added back my harvested cells, which they refer to as your “birthday,” hell broke loose. Your body begins rejecting and fighting the cells, and your bodily functions stop. I was in the hospital for three weeks, in isolation, and no one could visit. Slowly but surely, back I came, after wearing diapers. I was told I needed to begin exercise.

It was time to regain your strength.
Yes, which began with walking a certain amount every day. I decided to find the joy in all this, so I wore a Cat in the Hat, red and white, three-foot hat as I went into the hall for my exercise. Everyone who saw me would light up and laugh. When you’re going through something like that, you need to find inner strength and joy. I got stronger and stronger. I finally went home and could have visitors. My wife and I attended a class on what to do and not do, what food I could eat, etc.

I started teaching again–online. I’ve been teaching event management and production at New York University’s Tisch Center for Hospitality for 27 years. I teach both undergraduate and graduate students; I developed the first online event management course. Sadly, I had to leave BizBash Media, my company, because I couldn’t go out to work.

When you were diagnosed, did you know anything about Hodgkin lymphoma?
No, I didn’t know a thing, and my doctors didn’t tell me much. I was 72 at the time. I’m grateful that our cancer center in New Jersey has a partnership with Sloan-Kettering. I found out about Hodgkin’s International through a friend of mine who was diagnosed during her late adolescence.

Now I have regular PET scans and doctor appointments. I always worry, because the threat is there. I’ve seen how important it is to get to specialists and to be vigilant about check-ups. After five years, I had a colonoscopy, and they found five non-cancerous polyps, which were removed.

At one point, I had a problem breathing, so I saw an ear, nose and throat specialist who determined I had a fungus–about the size of a mushroom–growing in my sinus. He removed it surgically. He told me this was a result of my low immune system; something got in there, found a home and grew. Nothing could fight it.

How are you doing these days?
The rest of the story is that I’m happy, living in New Jersey and still teaching, and my wife and I love going to the Berkshires every summer. My daughter formed a club called “Ricky’s Riders,” one of many riding clubs that raise funds for research at Sloan-Kettering. Each year, we raise $15,000-20,000. Many friends from my working world support this effort.

I’ve had a great career. I dropped out of Suffolk Law School in order to attend Brandeis University, which had one of the top theater programs at the time. After graduating, I went directly to New York–and Broadway. I was in “Fiddler on the Roof,” starring Zero Mostel and then “Candide.” I soon pivoted to working in clubs with “Richard Aaron in That’s Entertainment.” My manager got me on the Catskills circuit and on cruise ships. Once my first child was born, I began doing events. I helped start the industry by defining event planning as a profession, launched BizBash Media and created an event society that became a 2,000-member global organization.

I feel lucky. I’m trying to stay as healthy as I can so I can enjoy my grandkids’ bar mitzvahs and weddings. But I do know that the horizon always has a sunset.

Leslie Lomot

When were you diagnosed?
I was 14. What started out as a cold and congestion turned out to be non-Hodgkins lymphoma; I had a tumor in my mediastinum–the chest cavity–that wasn’t allowing blood to get through. My arms, legs and face turned red, and I couldn’t swallow food. When my pediatrician took a chest x-ray, I was sent right away to the emergency room. That’s when I had a biopsy. It was 1977.

My mother was ahead of her time. She was a very strong advocate and probably the doctors’ nightmare, because she wanted to know every detail. I didn’t know what was happening; I just knew I was sick.
You were in the eighth grade. Did you tell your friends about your condition?
Yes, I had one or two friends who were protective of me and visited me in the hospital. I had two years of treatment–cobalt radiation aimed at my whole chest and chemotherapy consisting of vincristine, methotrexate, asparaginase and adriamycin. Back then we didn’t have anti-nausea drugs and no ports, so my veins were completely depleted. I remember there would be 20 of us, adults and children together, in the waiting room with no TV, so you could hear people screaming. When my hair fell out, I wore a wig, but it was uncomfortable, and kids at school would pull it off. I think I deserve a Make-A-Wish, which back in 1977 didn’t exist.

By eleventh grade, treatment was over, I was told I was in remission, and I became anorexic. I needed to get some control over my body, so I stopped eating. The situation turned around when a psychiatrist said: If you don’t start eating, I’ll put you back in the hospital. I didn’t want that. I headed to Vanderbilt University to major in psychology. My initial thought was that I could help kids with cancer, but I found out it was too difficult. I became a social worker focused on kids who have other problems. I love it.

You headed into adulthood.
Yes, my life continued pretty normally, quite honestly. My thyroid shut down when I was 19, and I take medication, but I had no real understanding of late effects and why I had to keep going back to an oncologist for check-ups. My mother kept pushing me. I had a lot of bronchitis and colds, and I would get so sick compared to other people.

I got married and had no trouble conceiving. My two children were born in 1993 and 1995. But soon things really hit the fan.

You experienced late effects?
In 1999, I began to have cardiac symptoms. I always went to the gym everyday, but I started getting dizzy. I was diagnosed with heart failure and cardiomyopathy; my heart muscle was weakened. Then in 2001, I was diagnosed with early-stage breast cancer–ductal carcinoma in situ (DCIS). My response was that, since I never wanted chemotherapy again, I’d have mastectomies. I had to have the surgeries done separately, which meant recovering each time. You weren’t able to have a conversation about going flat, as happens today, so I have expanders with saline implants.

I started developing what were thought to be panic attacks, but ended up being bradycardia–a slower-than-normal heart rate. I had a pacemaker put in, and because of my radiated skin, what should have taken an hour took four hours. Then my neck started hurting, and a CT scan revealed a tumor the size of a mango. I was diagnosed with sarcoma and had surgery to remove it, along with half my neck. I couldn’t have traditional radiation, so I had proton-beam therapy at Memorial Sloan-Kettering. I lived in a hotel in New Jersey.

What happened then?
I went home, went on disability and then found out the cancer had metastasized; I had lung metastases throughout my chest. The timing worked out, because by 2015 immunotherapy had proven effective. With the theory that my new cancer was radiation-induced, it might respond to the newest treatment for melanoma. I began a clinical trial of Yervoy and Opdivo, and my lung metastases disappeared–and I had minimal side effects.

After 15 years of always something, and no downtime, life has been somewhat uneventful. I’m really happy. I wake up in the morning, and my neck hurts, and I can’t work that much, but my life doesn’t revolve around doctors. Once I had the sarcoma, I said: you need to take it easy. I try. I want it on my tombstone: She really tried.

Can you offer advice to people who have recently been diagnosed?
I’m healthy now, and that’s what’s most important. I work out every day, and I eat well. I do whatever I can. Between college and when I developed the heart condition, I worked out a lot. I think it helped me. No junk food; I never did that.

I would tell people they have to advocate for themselves and get second opinions. And you have to be able to trust your doctor. Ask questions. Don’t just say yes to everything.

André D. Singleton

When were you diagnosed with Hodgkin lymphoma?
I was diagnosed in October 2004 when I was 18 years old.

What was the biggest challenge during treatment?
Everything was the biggest challenge for me. I fought tooth and nail to get to college and was a freshman at Morehouse College in Atlanta, Georgia. It was five weeks into my freshman year—during midterms. I couldn’t wrap my head around the fact that I wouldn’t be returning to school, AND I was now tasked with fighting for my life. I returned home to Kansas City, Missouri, to undergo all the blood tests and biopsies, which ultimately led to being diagnosed with and treated for Stage IV Hodgkin’s. Heartbreaking, to say the least.

When did you first meet another Hodgkin’s survivor?
I met Quiana Parks in 2016. We’re the same age and went through treatment at the same time. It was an emotionally expressive moment for me. I love her.

What has been the most difficult thing about being a survivor? The most rewarding?
The most difficult part is that, not only am I surviving HL, but I am also surviving as a Black man, a gay man, an artist and a poor person. It’s lonely navigating the world with so many strikes against me. The oppression of the world really crushes each of these parts of me; collectively they are crushed. At age 18, I never had a starting chance to be self-sufficient and independent. I have been tethered to a medical system that has never cared about me. I haven’t had consistent care, and I struggle with even using the word “care” because it hasn’t and doesn’t feel very caring. So, the compounded factors make survival a very difficult thing. I’m often afraid I won’t make it to age 40. Two healer/teachers, Sobonfu Somé and Malidoma Patrice Somé, who have been important to me.

The most rewarding has been my ability to understand the shadow side of life–how “darkness” serves me. I was so young, with such a pivotal diagnosis, that I was ushered into the realm of sickness, dying and death. I have deeply connected with many people who are sick and dying; I continue to honor my dear loved ones who have died. The urgency to care and share what resources I have–whether inner or outer resource–is paramount to me. The struggle of being a survivor has been very real, and the truth is that even iron wears down. I can’t do it alone, no matter how inspired I am. I still need critical help and support. So, I guess the reward has yet to come.

What is the most interesting place you have visited or would like to visit after COVID?
I would say the most impactful place I’ve visited is Salvador, Brazil. I don’t believe there will be an “after COVID,” just like there isn’t an after cancer/Hodgkin’s. However, I do look forward to when I will be able to properly visit Africa.

I’ve spent some time in South Africa over the years. I see myself spending time in Burkina Faso and other African countries. Burkina Faso is the home of two important spiritual teachers who have been major healers and instrumental in fortifying my faith in my body and genetics as an African person. I have infinite reverence for their understanding and eons of practiced faith. I want to be in a place where this isn’t a concept or something you can buy, but it is essential to the day-to-day experiences.

Who is the person you admire most?
I admire people who endure suffering and really try to make sense of what they have or don’t have. The ones who can’t help but express what happened to them and how it still impacts them. The ones who keep repeating how they feel because they haven’t and don’t feel heard. Because I know that this chips away at their souls. But I admire the tenacity in those who go out with a fight. I never say people “lost their battle to cancer” or “cancer got the best of,” because cancer died, too, when said person departs the physical plane.

What would you say to your pre-Hodgkin’s self?
Words of wisdom, “if I had only known…” Trust yourself and your heart, mind, spirit and soul. Be firm, but lead with soft hands, a soft voice, soft heart, soft eyes and love. Always give thanks. ​

Where do you see yourself in five years?
Hopefully, still living if the world can give me that grace. I can’t be here if others don’t see me here or want me here. It’s not even that I refuse to put the onus on me. I just can’t do it alone; no one can.

Anthony Bayly

What was going on in your life when you were diagnosed with Hodgkin lymphoma?
It was 1979, and I was 36. I felt I was young, but I was always told I was quite old to have symptoms of Hodgkin’s. The doctors seemed a bit surprised. I found some lumps in my neck and went to my GP—general practitioner. He sent me to an ear, nose and throat specialist, and when she took a biopsy, she reported to me that it was Hodgkin’s. I had little idea what that was, so I went to a local library and looked it up. I was referred to the cancer unit at the Radcliffe Hospital in Oxford, England, where I was put on a course of radiotherapy.  I drove there first thing in the morning, but I carried on working.

What happened when your treatment was over?
They didn’t use the word “cured,” but they said the diseased tissue was gone. There was never a guarantee that it wouldn’t come back. I’m not sure how effective I was at work, but it kept me occupied, and my colleagues were very supportive. Three years later, more lumps appeared, I received another course of radiotherapy, and I continued working. I was told it was radical treatment and was supposed to clear it up completely. But three years later, more lumps appeared.

How did you get through that?
Although it wasn’t easy, I did survive. I was married with four children. My wife was a pediatric physiotherapist, but I was the breadwinner. When lumps in the neck appeared again, I went back to the same treatment center, where a new oncologist insisted on another biopsy so he could understand the nature of my cancer. He wanted to try chemotherapy; I couldn’t have any more radiotherapy. He certainly gave me the right treatment, although it was a bit rough. I didn’t feel well—no energy.

I continued to work and had quite a good career. I’m a professional engineer and at the time was working on the early development of the CT scanner. I later worked on the MRI scanner, as well as other diagnostic medical equipment before moving on to communications equipment. But I retired early, because in that line of business—as an engineer—you need a lively mind. I was lucky to be there.

Have you had late effects as a result of your treatment?
I’m very weak in the shoulders and upper body, from my chest to my chin. I go to a gym near where we live in Stamford. The owner is an ex-boxer; we don’t box each other, but some of the exercises, where you punch a bag, are very useful in strengthening the shoulders and arms. Then, I was at a health check when the doctor felt I had a heart murmur. So I had an artificial valve inserted. Also, my voice is strange—a bit squeaky. I used to sing in a barbershop group, a style of singing that began in the U.S. There were 12 or 14 people in our group, and I sang bass. I can’t sing at all now, which is rather sad.

The worst thing is my balance; it’s getting worse. When I go walking, I use a stick—not so much for support, but to provide me with a bit of reference. I’m not sure how much of this is old age. I have a walking trolley with handles, which allows me to walk in a crowd without wavering. I also have an electric scooter, which I use if I’m going quite a long way.

Finally, my neck is quite small for a person my size. I’m about six feet tall. So when I buy a shirt that fits my body, it is too big at the neck for a tie.

You have a large extended family, including ten grandchildren.
Yes. We moved from London to Stamford because of my daughter; she’s a doctor who’s married to a doctor. Of course, they can’t treat friends or family. I have a loving, supportive wife; we’ve been married 50 years now. I consider myself very lucky.

Do you have advice for someone who might be facing Hodgkin’s or late effects?
Keep smiling. By the time I was on chemotherapy—my third treatment—I had begun to kind of live for the moment. Before I had these life-changing problems, I expected to live to old age. Both my parents did.

In other words, you live thinking your life is ahead of you. When I was on my third treatment, I realized that probably I didn’t have my life ahead of me. The fact is, I survived: the average age for death of a male in the UK is 79, and I’m 79.

David Cunningham

Describe your life when you were diagnosed with Hodgkin lymphoma at age ten.
I was swimming competitively year-round and a pretty active kid. My symptoms arose when, as an altar boy, I became overheated on the altar and felt like I was going to faint. The pediatrician diagnosed anemia. However, soon I was hyperventilating when I swam across the pool.

A chest x-ray showed a spot on my lungs. This led to a biopsy; I had a swollen lymph node on my neck and was diagnosed with Hodgkin’s stage 4A.

You headed into treatment.
I went for weekly, eight-hour chemo sessions. We’d get up early for the long drive, I wouldn’t eat, and I’d usually get sick at the same point on the Schuylkill Expressway heading to Children’s Hospital of Philadelphia. It wasn’t the chemo that gave me the dry-heaves; it was the thought of going to the hospital.

I’d spend all day sitting with the other kids who had leukemia and other cancers. That’s where I learned to empathize as I saw kids whose disease had progressed much further than mine. I wasn’t the most devoutly religious kid, but I grew up with a foundation of personal faith and strength that really helped me through treatment. I relied on it.

Then treatment switched over to mantle radiation for a few months before I went back for more chemo.

What happened when your treatment was over?
My family bought an old boat, and I started water-skiing a lot! My father was an airline pilot, so I grew up with a sense of adventure. When I was in high school my family hosted a young man from Peru, and I went to Peru that summer. That same sense of adventure took me to Denmark as a junior in high school and to the University of Hawaii for college.

I went to work for United Airlines, rode mountain bikes, surfed, bodysurfed and scuba-dived. I moved to California and began racing sailing yachts. I changed jobs in 1997, moved to Chicago and met my wife.

Did late effects catch up with you?
Complacency can be tricky. On one hand, you don’t want to think about the treatment you had; on the other hand, you need to. Had I known what I know now, I would have started seeing an oncologist during the early 2000s. I finally saw a cardiologist around 2006, and she noted a potential diagnosis of aortic stenosis. This was not conveyed to me, and I felt fine.

In 2009, my wife and I were laid off and decided to go into yachting full-time. We got additional credentials in Florida and were hired by the owner of a mega-yacht who also owned an NFL team. In the span of two weeks—just from the sheer activity—I passed out twice. I saw a cardiologist who said: you have aortic stenosis, and you need heart surgery. We’d arrived in Florida with no health insurance, we were fired, so we packed our bags and flew back to Chicago.

Fortunately, I discovered Illinois had insurance that covered pre-existing conditions, and I checked all the boxes. I had a cardiac MRI scheduled for March 9 and the surgery scheduled for March 11. I received a letter telling me my coverage would start on March 8. I’m convinced it wasn’t just serendipity that lined everything up perfectly. I had an aortic valve replacement to repair radiation damage, was up and walking the next morning and out of the hospital in less than six days.

What happened next?
About two years later, symptoms began; I became breathless when I walked our dog. I was diagnosed with heart failure. I began to study heart failure in cancer survivors and met Dr. Tochi Okwuosa, a cardio-oncologist at Rush University Medical Center. I got pretty sick waiting to schedule surgery with my original surgeon; we all agreed it was best to have him do it, as he already knew my anatomy. Dr. Tochi was instrumental in helping select mechanical valves for the surgery; they are less susceptible to inflammation and infection than tissue valves. A good reason to have a cardio-oncologist on your team. They replaced the aortic valve, mitral valve and repaired my tricuspid valve.

The surgery took him 11.5 hours; I went into the OR on Monday and woke up on Wednesday. It was way more complicated than my surgeon anticipated due to the amount of scar tissue. He had to re-stop my heart, take one of the valves out, clean off the scar tissue and put in grafts. I was in the hospital for 1.5 months before heading to a rehab. When I got home, I returned to sailing and my financial career. I’ve captained pirate ships and a couple of America’s Cup yachts on the Chicago lakefront.
I continue to see Dr. Tochi, who can look at my “big picture” from the perspective of a long-term cancer survivor. What I’ve learned is that cardio-oncology is about the specific care that cancer survivors should and need to think about for a better quality of life. For example, I didn’t realize that tissue valves could contract endocarditis.

Do you have advice for individuals who were diagnosed recently or years ago?
Pay attention to your body; it tells you things. I delayed doing that in the past. Don’t think you can over-react; your under-reaction could be the problem. If a cardio-oncologist isn’t part of your team, find one—even if it’s through telehealth. A traditional cardiologist isn’t going to look at you the same way.

Karen Crossley

When were you diagnosed with Hodgkin lymphoma?
I received the diagnosis of cancer in November 1995, after being told by my primary care physician for nine months that nothing was wrong with me. He said I was just “a stressed-out mother of three.” It was my gynecologist who actually listened to me and ran tests. In addition to abnormal blood work, I was also diagnosed with idiopathic thrombocytopenic purpura (ITP), a bleeding disorder in which the immune system destroys platelets. My gynecologist would save me again later on, when I was having a late-term miscarriage with complications, and he happened to be the doctor on call.

Anyway, I received the call while at work on a Friday and was told to go to the hospital on Monday, when an oncologist would see me. I hung up the phone, and my mind started spinning…my kids, my husband, my job! I was diagnosed as stage 1B and received 4400 cGy (centigrays), delivered in 22 fractions over 30 days. I was 33 and married 13 years with three children.

What was the most difficult part of your treatment?
I would say the most difficult part was the delay in getting started with treatment. I had to get my ITP under control to have surgery, and then the staging procedures were postponed because of snowstorms. I learned to stand up for myself on the day the radiologist drew all over my face, neck and chest with a black marker and said to leave it on until I returned two days later.

I felt humiliated. I was embarrassed, and there was no way I was letting my kids see me like this. I turned around, walked into the bathroom, locked the door and sobbed uncontrollably as I scrubbed off all the marks while they banged on the door, telling me not to. I came out and thought: “I will walk through this with dignity.”

Who was your biggest supporter in the early days of your treatment?
My husband, Rich, my high school sweetheart, is and was my biggest supporter. There were days when our vows, “in sickness and health” were tested, but through it all he has always had my back. We have been together more than 44 years.

Although my father lost his battle with cancer five years before I became sick, I consider him to be a hero of mine. Losing him provided the drive to fight even harder to survive. I didn’t want my kids to feel the pain I felt when I lost him.

What late effects have you had as a long-term survivor?
My late effects have included an underactive thyroid with nodules, many skin cancers–one melanoma–abnormal tissue growth on the aortic arch requiring two open-chest surgeries, high blood pressure, fast heart rate, and a third open-chest procedure to remove a broken rib.

I also had failure of my sternal wire closure and an abnormal growth on one tonsil that required removal of the tonsil and surrounding tissue. I had a hysterectomy at age 47, and I’ve had continued ITP and fibroid problems, shortness of breath, GERD and swallowing problems resulting from having my throat stretched. I suffer from radiation fibrosis syndrome and hearing loss in my right ear. I have regular breast screening to check for breast cancer.

When did you first meet or contact another long-term survivor?
I first made contact with a survivor group in 2015. I felt lost, mainly from fighting my insurance plan about appeals. Connecting with others gave me the peace of mind that comes with knowing I wasn’t alone. It gave me the strength to continue. The first survivor I met was Nancy Humes Masterson.

What do you know now about yourself that you didn’t know before Hodgkin lymphoma?
Hmm…I know that life is too short to sweat the small stuff. I try to live with no regrets. But my hardest lesson is to fix what can be fixed, and walk away from what can’t.

I rarely think about all the things that have transpired during the last 25 years, but once I stop and think of what’s happened, it really does define who I am today. I often say I am one of the lucky ones and have not experienced anything compared to others. Prayers to everyone.

Karen Crossley was one of the original founders of Hodgkin’s International. In fact, she established the Facebook site, “Living Life After Hodgkin’s Lymphoma.” Karen has worked tirelessly to support and assist many long-term survivors, and we are very grateful for all that she has done.

Sandi Liberatori

When did you learn you had Hodgkin lymphoma?
It was 1983; I was a law student, home visiting my family during a break. I was playing with my necklace when my fingers touched something on my neck that felt like a golfball. My Mom and I were in shock when we realized we could see the “lump.” She wanted me to wait a bit, thinking it would disappear. My Mom was hopeful but scared. I was just plain scared.

“I will not wait–I am getting it checked out NOW!” I said. Little did I know that, down the road, these words would become my mantra when dealing with any of the weird physical or emotional feelings I had.

You followed your instinct and got checked out?
My small town doctor and local hospital confirmed my worst fear after surgery. Weirdly, I remember coming out of the biopsy and overhearing the 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 did look suspicious.”

I was off on the roller coaster that IS cancer. CANCER! That’s all I heard; that’s all I knew. Hodgkin lymphoma meant nothing to me at that time—never heard of it. The doctors in my town had, by coincidence, only seen it once before. They had initially misdiagnosed a young patient because it was rarely seen. They caught mine only because they missed hers.

Did you receive any help along the way?
I got a call from my law school Dean, who revealed to me that one of my law professors–a popular, young wunderkind–also had Hodgkin’s. This seems like such a coincidence. Then this dynamic, entertaining professor reached out to me, almost shyly, and offered advice. 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 said that when he realized he had read medical journal articles about this disease that his oncologist never heard of, he quickly made a change.

He found a young oncologist at a major cancer research hospital in the same city and made the switch. “Go to him–and mention my name,” he told me. I did, and I remain eternally thankful to the professor for that valuable referral to my oncologist. Thirty-five years later, he remains my primary oncologist and the “bandleader” of the team who manage my late effects from the lifetime dose of radiation I received.

So your radiation treatment led to late effects?
Yes, and there was another strange coincidence. As a school kid, I loved historic novels, including “Hiroshima,” the story of survivors of the atomic bomb that 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. 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.

Radiation cured me of Hodgkin’s but led to my own “Hiroshima.” I have had endometrial cancer (hysterectomy), breast cancer (bilateral mastectomy), kidney cancer (partial nephrectomy), gallbladder removal, blood clots in the lungs, multiple basal cell carcinomas, carotid bruit and subclavian artery stenosis. Suffice it to say, I have been through a lot. Are all my problems related to radiation treatment? Who knows, but I’ve 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.

Radiation saved my life, but it 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 Hodgkin lymphoma 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.

How are you doing now?
Twice a year, I head to the city for my check-ups. I recently became a patient of the Survivorship Program at the Abramson Cancer Center of Penn Medicine, where I see various specialists as long-term issues crop up. I often head to my appointments in a state of fear and anxiety, which I now recognize as probable PTSD [post-traumatic stress disorder]. My health problems affected 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 lymphoma survivors online. Hearing their stories, I no longer felt like a medical weirdo or a hypochondriac. This connection turned into my involvement with Hodgkin’s International, which has helped me tremendously. I’m still living and looking for coincidences!

Karla Guererri

What do you remember from your experience with Hodgkin lymphoma?
My capacity for denial was powerful and complex. As a young adult with a history of “Hodgkin’s disease,” as we used to call it, I vowed never to tell anyone, especially once my treatment was over. Never–under any circumstances. But that vow became harder to keep each passing year as the side effects and late effects nudged or barged their way into my life. I gradually accepted that it could never be over.

Did you find a way to adjust?
Most of us learned early on what it was like to be pitied or avoided. It was just too uncomfortable for some people to be around “that teenager with cancer.” We were told how lucky we were to be alive, miraculously saved by what seemed like over-treatment by the medical system. At the time, we walked around with radiation burns, bald spots and the hideous scars of surgery. Soon, our long swan necks were the only pretty “side effect.”

Little did we know there were other side effects. We walked alone, because none of us knew any of our Hodgkin’s cohorts back then. Venturing into college life the year after my treatment was completed, I certainly did not want to tell any of my new acquaintances about the experience. I didn’t even want to remember it myself. On the edge of adulthood, how could I know what the next 40 years would be like?

Did you meet others who had been diagnosed with Hodgkin lymphoma?
At Strong Memorial Hospital in Rochester, I met another teenage girl, but we never kept contact afterwards. At college, I met one other young woman; we are in touch, and she is thriving. Aside from that, I never met another survivor of Hodgkin’s until well into my adult life.

Once you are an adult, who wants to have to explain to their hair stylist why the back of her head is bald? Who wants to explain to colleagues or students why you are not donating blood at the blood bank? Who wants to alarm fellow skiers, cyclists and kayakers to possible troubles when you are all out to have a fun day? Who wants to say that they have a damaged heart, but even if it acts up, we don’t know for sure what it will look like? Is it better to keep quiet and hope for the best? Maybe.

Can you describe the late effects you’ve experienced?
Late effects can be many and varied. I’ve often had to do my own research and then tell my doctors what to look for. As I would discover, late effects of radiation do not go away; they might even become more intense over time. When I began to experience some of the late effects (secondary cancers, heart disease, lung issues and radiation fibrosis syndrome), there was much uncertainty, even in the doctor’s office.

So, as a Hodgkin’s survivor, what should I tell friends, family and co-workers about my (several) chronic conditions? I learned, little by little, how and when to tell close friends and potential partners–often by trial and error. Since we were pioneers in surviving the disease, as well as the treatment, there was little information available.

You’ve had to manage what you would tell people.
Yes, and both my broader social circles and my professional world would become a different story. More than 30 years after the initial treatment, I found it awkward and sensitive to explain in an “elevator speech” how I happened to need surgery for breast cancer, heart disease and thyroid disease, all within a four-year span. Even more difficult to explain were the gaps in my professional resume. I would rather make things up than admit that I was in the hospital or recovering from surgery! I usually summarize: “I’m in pretty good shape for the shape I’m in.”

Like everyone else, I wanted to be effective in my professional life and respected in the workplace. I didn’t want my superiors OR my subordinates to question whether or not I had the physical capacity to do my job. Add to that the fact that access to health insurance is often tied to employment, and you have yet another reason to keep things secret. (Consider that the Americans with Disabilities Act does not cover a person until she/he has been on the job for a year.)

What are your final thoughts about life as a Hodgkin lymphoma survivor now?
For a long-term survivor of mantle radiation therapy and other treatments for Hodgkin’s, the complications and considerations are extensive. Information shared through a blog may help others who find themselves in the same boat, but what about the possible repercussions of posting this particular information in a public place? And what could be more public than the internet? “Going public” is a highly personal decision that cannot be reversed. Yet going public is the ONLY way we can connect with each other, share our successes, inform our doctors and advocate for access to the research and clinical care we need in order to keep thriving.

Glen Kirkpatrick

When were you diagnosed with Hodgkin lymphoma?
It was 1987; I had developed a lump the size of a golf ball that protruded from the base at the right side of my neck. I was serving as a police officer with the City of Manhattan Beach, California, at the time. I blamed the accompanying fatigue on the long, extended shifts I was working. Doctor visits, labs and diagnostic procedures followed. This led to me being diagnosed with stage 3a Hodgkin lymphoma.​

Cancer? My wife, Debbie, and I were shocked at the news. After 50 radiation sessions, the lymphoma went into remission. It took several months to heal from the laparotomy and gain sufficient energy before I was able to return to full duty at the police department.

Did your life return to normal?
Not really. Although grateful to be in remission, my life had been threatened, and I would never be the same. Debbie and I began thinking about moving; I had to get away from anything that reminded me of my cancer experience. We purchased a home set on four acres in San Diego County. Three months later, I began working as a police officer with a city close to our new home.

A year and a half later the Hodgkin’s returned. Debbie and I were, of course, devastated at the news the cancer was back. The oncologist who was caring for me prescribed chemotherapy. At the time I incorrectly believed chemotherapy was given to cancer patients to extend their lives by a few months, only to die from the disease anyway. I thought, this time I would die. I didn’t tolerate the chemotherapy very well. During the course of treatment, I was diagnosed with major depression.

Due to profound fatigue combined with the depression, I had to stop working. My fellow police officers and other city employees donated hours of paid leave for me so that I never missed a paycheck. Debbie and I remain grateful for their generosity.

Did the depression finally lift?
I was prescribed different antidepressants, but none were effective. Suicidal thoughts crept into my mind. Debbie found a local mental health center where I had a week of inpatient treatment. However, I was still depressed when discharged.

One or more psychiatrists, along with friends in the medical field, suggested electro-convulsive therapy (ECT). After ten treatments, the depression lifted. Several months later, I returned to serving as a police officer. At times I felt like a superman. I was healthy again; I felt alive.

What happened then?
Less than a year later, the fatigue that previously had signaled cancer returned. Concerned, I went back to my oncologist. Lab tests and a bone marrow biopsy showed I had chronic lymphocytic leukemia (CLL): cancer–again. That afternoon my wife and I sat on the couch, held each other and cried. But we weren’t alone. We were learning to share our burden with our new church family.

At the time, there was no treatment protocol for CLL—at least none that I found in my research. Thus, I chose to travel to Mexico to have a non-toxic chemotherapy based on natural ingredients. I failed to gain remission after two weeks of inpatient therapy and several months of outpatient treatment. Unable to work due to profound fatigue, I was forced to retire early from the police department. Five years after diagnosis, the CLL went into remission.

Did you experience any late effects from your original treatment for Hodgkin’s?
Yes. They include stenosis of the mitral valve and aortic valve, congestive heart failure and coronary artery disease. Also chronic kidney disease stage III, chronic fatigue syndrome, migraine headaches, high-frequency hearing loss, tinnitus, cognitive change, anemia and dysphagia (trouble swallowing).

​In 2014, I had heart surgery to replace a severely diseased aortic valve. In 2021, my severely calcified mitral valve was replaced via the same procedure.

Between 2011 and today, my mental health diagnosis has included adjustment disorder with mixed anxiety and depression, major recurrent depression with anxiety, dysthmia (persistent mild depression) and mood disorder with depressive feature due to my general medical condition.

You wrote a book, Overcome: A Book of Intervention, Rescue and Redemption, along with your wife, Debbie.
Yes. While writing the book I came to realize doing so was helping me to fully process my cancer journey for the first time. Debbie wrote “Devoted,” which is my favorite chapter in the book! Together we’d hoped our story would be an encouragement to others.

Overcome is now in its third edition and available on Amazon. Debbie and I recently decided to donate some of the proceeds to Hodgkin’s International.