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Barry’s Story

12/16/2022

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Barry Mendenhall, Diagnosed at Age Five, Has Beaten the Odds

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“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.“
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Barry Mendenhall (right) searched for--and found--Alan Schroeder, MD, the oncologist who treated him when he was diagnosed at age five.
You were diagnosed with Hodgkin lymphoma at age five. Are you aware of anyone else being diagnosed that young?
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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.

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Rick's Story

11/23/2022

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Rick Aaron Rubin, a Born Entertainer, Confronts Stage 4 Hodgkin’s Lymphoma

“When you’re going through something like that, you need to find inner strength and joy. I got stronger and stronger.”
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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.


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Anthony’s Story

4/13/2022

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Anthony Bayly Keeps Smiling and Lives for the Moment

​“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.”
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1. 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.


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Leslie's Story

4/12/2022

 
Leslie Lomot Endorses Second Opinions and Finding a Doctor You Trust

“Once I had the sarcoma, I said: you need to take it easy. I try. I want it on my tombstone: She really tried.”
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1. 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.
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Karen's Story

4/11/2022

 
Early On, Karen Crossley Learned to Stand Up for Herself

“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.”
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​1. 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.


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David's Story

4/10/2022

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David Cunningham Has Bounced Back from Cardiac Late Effects

“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.”
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1. 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.


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Sandi's Story

4/9/2022

 
Sandi Liberatori Keeps Looking for Coincidences

“Nobody gets out of this life alive, right? I don’t regret my choice to go through a tough treatment.”
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1. 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. 


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Karla's Story

4/8/2022

 
Karla Guererri Confronted the Pros and Cons of Going Public about Hodgkin’s

“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.”
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1. 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.


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Glen's Story

4/7/2022

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Glen Kirkpatrick Turned His Post-Hodgkin’s Experience into a Book

“While working on our book I realized the detailed writing process was helping me fully process my cancer journey.”
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1. 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.
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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.


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Jane's Story

4/6/2022

 
Jane Isaacson Got Over Her Fear of Heart Surgery

“I am fortunate and trying to be as positive as I can be about my future. After all, I am still here and have no intention of giving up without a fight!”
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1. When were you diagnosed with Hodgkin lymphoma?
I was diagnosed and received treatment for Hodgkin lymphoma in 1978. I was well aware of the possible late effects and always made sure I stayed right on top of the annual checkups I needed. When my sister-in-law, Anita, who was diagnosed with Hodgkin’s the same year as me, passed away due to complications from coronary artery disease, I decided that, as a precaution, I should ask my cardiologist to perform some additional tests. I’d had annual Holter monitor and echo stress tests for a few years.
Apart from some breathlessness when walking up steps and hills, I had no symptoms. My cardiologist protested that I was overreacting, and further testing wasn’t necessary, but he subsequently ordered a CT scan that showed my arteries were severely narrowed and clogged. An angiogram then revealed my right coronary artery was 99% blocked. Fortunately, I was able to have a stent inserted during the same procedure.
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Lori's Story

4/5/2022

 
Lori Thompson Learned to Choose Faith Over Fear

“I know this: you can choose to live your life in fear—thinking all the late effects will happen to you. Better to embrace your life and what God has given you.”
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1. When were you diagnosed with Hodgkin lymphoma?
It was 1987, and I was driving home from work when I reached up to scratch the side of my neck and discovered an egg-sized lump. “What is that?” I wondered. I was 20 at the time, and when I arrived home, I asked my mom, a nurse, to take a look. She turned white. I was soon being examined by our family doctor, who took x-rays.

We sat in the waiting room, awaiting the results, which he brought over and held up to show us that my chest cavity was white; it was full of disease. Two weeks later, I went for a surgical biopsy, which is when we found out it was Hodgkin lymphoma. This was followed by a slew of tests: barium drinks, CT scans, a bone marrow biopsy and a lymphangiogram, which left polka-dot tattoos on every toe that are still visible today. Then there was the staging laparotomy, performed to determine the extent of disease, followed by surgical removal of my spleen, which was brutal. I spent eight days in the hospital and remember a kind, gentle doctor sitting on the side of my bed and saying “I am going to take good care of you and get you well.”


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Andre's Story

4/4/2022

 
Andre´ D. Singleton Has Learned to Trust Himself, Be Firm and Give Thanks​

“The struggle of being a survivor has been very real, and the truth is that even iron breaks down. I can’t do it alone, no matter how inspired I am.”
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1. When were you diagnosed with Hodgkin lymphoma?
I was diagnosed in October 2004 when I was 18 years old.

2. 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


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Tess's Story

4/3/2022

 
Tess Nowell Learned That Things Can Change​

“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."
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1. How old were you when you were diagnosed with Hodgkin lymphoma?
I was 18 and treated with mantle field radiation. Life went on and, in 2013-14, I became constantly tired. I was 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, sometimes when it would have been better to rest. Even so, I had to take a lot of time off, which caused stress and upset me a lot. As I approached 50, I wondered how much longer I could keep going with my job.


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Sharon's Story

4/2/2022

 
Sharon Robinson DelBusso Maintains Healthy Habits and Gives Back
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“I really had no idea what Hodgkin’s disease was. I was young, naive and living in the pre-internet era.“
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1. When were you diagnosed with Hodgkin lymphoma?
It was 1982, and I was a 21-year-old, newly married graduate student, taking a full load of classes and working full-time. Feeling tired was par for the course—my “new normal.” During an annual physical exam, my doctor felt a lump in my neck and told me that if I found another one, or if this one didn’t disappear in a few weeks, I should come back.

The swelling did NOT go away. I returned to my physician, and this time he recommended a biopsy to determine why the lymph node was swollen. He said that it was probably nothing, just my body fighting an infection or possibly “cat scratch fever.” He never mentioned the “C” word. My biopsy was on March 30. Two days later, on April Fools’ Day, I was told that I had Hodgkin’s disease. NOT funny.


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Nancy's Story

5/25/2021

 
Nancy Humes Masterson Believes “We Are Stronger Together”​

“All of these ‘meet-ups’ with fellow HL survivors and their spouses have had a significant impact on my life. I now know that I am NOT alone.”
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1. When were you diagnosed with Hodgkin lymphoma?
In 1991, I was a young nurse, and I found a lump, which is how my Hodgkin lymphoma was discovered. I was treated with only radiation therapy since I’d had a staging laparotomy with splenectomy. Then in 1997, I discovered a lump in my groin area; I had a recurrence of Hodgkin’s.
But I was initially told I had non-Hodgkin lymphoma, and there was no treatment available. I went for a second opinion, where they said it was a recurrence of Hodgkin’s. So I went to the National Institutes of Health for a third opinion; their opinion was that I had a recurrence, and I began ABVD chemotherapy (adriamycin, bleomycin, vinblastine, dacarbazine).
After three months of chemotherapy, I got married. Although my menstrual cycle had stopped during chemo, I soon became pregnant; my daughter was born in 1998. I went on to love my life and had two more daughters while working full-time as a nurse. 


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    Every one of our featured survivors has something unique to share. From diagnosis to treatment to life after treatment, their experiences with Hodgkin lymphoma convey insight and offer inspiration. We are grateful to each of these individuals for their willingness to share their story.
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  • Latest News
  • Survivor Stories
  • Resources
    • What are Late Effects? >
      • Cardiovascular Late Effects
      • Subsequent Cancers
      • Psychosocial Effects
    • Articles and Papers
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    • History of Hodgkin Lymphoma
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