Lori Thompson

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.”

Then was it time for radiation therapy?
Yes, which started by having a roadmap painted on my face, chest and abdomen; I was told I couldn’t wash it off. I looked like a warrior going into battle. And I was going into battle: I was undergoing mantle and abdominal radiation treatments, which lasted for three months. I lost half my hair, slept all the time and couldn’t eat. My skin was burned. Back then, there were no support groups, there were no websites and no Facebook groups. I remember seeing the pain in my parents’ eyes as they watched me suffer through severe nausea and weight loss. It was like a bad dream that I needed to escape. And I did escape, because I was cured of the cancer.

From there, you headed into your adult years?
Yes, although I have no idea how I managed to do that emotionally. The two after-effects of treatment that I suffered were extreme fatigue and tachycardia—a rapid heartbeat. Five years later, I got married and, by 1997, I was pregnant. My ob/gyn hugged me and told me she thought the radiation had left me infertile. I gave birth to two sons and lived my life full of energy and good health. I had faith, and I never looked back.

But 18 years later, our eldest son was diagnosed with non-Hodgkin lymphoma. I was reliving my own diagnosis all over again, but it was worse because it was our son. He had chemotherapy, and his cancer went into remission. I often wondered why I had Hodgkin’s. I think it was so that I knew how to get my son through his own diagnosis and treatment.

Did things calm down for you then?
Three months after my son was pronounced “cured,” I was told that I had severe aortic stenosis, a result of my aortic valve being damaged by radiation, and required immediate heart surgery. We had just been through hell with our son, and life was busy again. I didn’t have time for heart surgery and recovery. It was my 50th birthday, and I said to my surgeon “Just promise me I’ll be at my son’s graduation.” He promised I’d be there, so we bought me a birthday cake and decided on faith over fear. I had the surgery in March 2017 in my hometown of Indianapolis.

How is your health today?
I’m currently stable, although living with fluid in my lungs, which is controlled with medication. I’ve found that keeping active is the best treatment. All the cancer events left me with mild post-traumatic stress disorder (PTSD) and the realization that life is fragile. I often feel the need to live with urgency, but I need to remind myself to slow down and take it one day at a time because the urgency moves faster than my body will allow.

Have you benefitted from finding Hodgkin’s International and other groups?
I found Hodgkin’s International about three years ago, then Facebook support groups for long-term survivors of Hodgkin’s. I started reading about what other people were going through, but I never thought that heart valve symptoms would happen to me. When I started posting on these sites that I was diagnosed with aortic stenosis, so much support came my way! I will be forever grateful for these groups of survivors who walk alongside me. I hope to meet every one of you someday.

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. Choose faith over fear.

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.

What happened next?
I had no idea that so much of what I was going through was linked with Hodgkin lymphoma. I found out about late effects and realized that that was my main difficulty. A very supportive occupational health doctor advised that my hours be reduced; my working week became more manageable, and I felt listened to. Luckily for me, I very soon discovered the Facebook support group, Hodgkins Lymphoma/Disease Survival & 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. I was not making this stuff up.

Did you then see the appropriate doctors?
I had so many medical appointments that I started counting them. During the first three years, I was averaging two appointments per week. It was a massive burden, but worth it to get thoroughly checked out. I had help from a psychologist at the Oxford Maggie’s Centre, for people with effects of cancer, and I learned mindfulness-based meditation. Through acceptance and commitment therapy, I worked on understanding my values and how I could be true to them while living a meaningful and satisfying life, even if I was limited in what I could do.

I had a cardiologist who fully understood the possible damage from radiation and arranged for appropriate tests and an orthopedic surgeon who performed an operation to transpose and de-tension my right ulnar nerve, with very good results. Thanks to his sound clinical judgment, I now have more strength and less pain in my dominant arm and hand, which gave me the ability to do so much more. My late effects oncologist is a clear-thinking and compassionate man, and my general practitioner has offered support, understanding and encouragement. Between them, she and my oncologist have pulled the various threads of my medical story together and helped me to manage and make sense of it all.

Did you find the support you needed?
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.

How is your health now?
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 has been huge.

Your story conveys optimism.
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 honor 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 grateful to all who have helped me, and still help me, in this way.

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.

How did your treatment go?
I really had no idea what Hodgkin’s was. I was young, naive and living in the pre-internet era. I thought everything could be cured with a shot of penicillin in the buttocks. NOT! After a few days of blood work, imaging and testing, I had a staging laparotomy to determine the extent of the disease. The procedure included a splenectomy. An incision was made from my breastbone to my pubic bone, which enabled my surgeon to see if the disease had spread elsewhere in my body. The result was that I was labeled “HD 2A,” meaning that Hodgkin’s was found in two areas: my neck and chest. The “A” meant that I was without symptoms.

After weeks of healing from the surgery, I began a summer’s worth of radiation therapy. I remember being strapped down to the table so that I wouldn’t move and, somewhere, the smell of cut grass. To this day, I don’t like the smell of cut grass; it reminds me of cancer cells being burned by radiation.

Were you able to continue your education?
During this time I postponed my schooling so that I could take time to heal. My body did heal, eventually, but my marriage was not strong enough to survive. I knew when I was driving myself to radiation treatments that he was not the right one for me. I learned a tough lesson through my diagnosis and treatment. You find out what your friends are made of.

After a two-semester hiatus, I returned to school, completed my studies and received a master’s degree in Applied Behavioral Sciences from John Hopkins University. I also received a whole new understanding of life.

Have you experienced any late effects?
I know that treatment in 1983 was very different than what it is today and that, because of the kind of radiation I received, my body has a higher than normal chance of developing secondary cancers, including breast cancer, as well as heart and lung disease. I’ve been lucky. I was always vigilant about performing breast exams and had both mammograms and breast MRI’s, alternating every six months. In 2014, I was diagnosed with breast cancer—ductal carcinoma in situ (DCIS). It showed up on my second MRI. I had a bilateral mastectomy with reconstruction a year later. No additional treatment was necessary because we caught it early, and it did not migrate to the lymph nodes.

Have you been otherwise healthy?
I’ve had my share of skin cancers, including both basal and squamous cell cancer, all in the radiation field. I am diligent about doctor appointments and vaccinations. I know that without a spleen, I am more susceptible to various illnesses.
After being diagnosed and cured, I will always be known as a blood cancer survivor. Doctors treat me differently after I tell them I’m a survivor. They watch me carefully. Sometimes I can’t help but think that if the disease didn’t kill me, the late effects of the treatment might, even many decades later. I try to be proactive with my body. I exercise, eat healthy, try to reduce stress and get a good night’s sleep.

What is your life like now?
As a survivor, I feel it’s important to “give back.” In 2000, I got involved with the Leukemia & Lymphoma Society and have been very active with their Team In Training (TNT) program. As a participant, I’ve completed many “century” bike rides (100 miles in a day), two half-marathons, several 10Ks and the Avon Foundation’s Avon 39 Walk in both Washington, DC, and New York City—all while fundraising and bringing awareness to blood cancer.

Almost four decades after being diagnosed, I’m alive, happy, remarried to a wonderful man and enjoying my life to the fullest. I’m happy to be retired and living in Denver with my husband and “fur baby.”

Heidi Wells Has Followed Her Instincts and Is Optimistic

The early 1970s was an exciting time to be in Washington, D.C. That is where Heidi Wells landed, working for Senator John Tunney of California with the goal of becoming a press secretary. With the Watergate Committee forming in February 1972, there was a lot going on.

“Later that year, I found a lump on my neck and was diagnosed with Hodgkin’s lymphoma,” Heidi says. “I’d never heard of it. I was 24 and thought I was going to live forever.” Thanks to Senator Ted Kennedy of Massachusetts, she was able to see John Potter, MD, who oversaw oncology at Georgetown University Hospital.

“Dr. Potter, who was very well-known, told me they were working on a cure. I was in a fog, but I never thought I was going to die. I had things to do; I had to play tennis, go to New York and see the world.” But first, Heidi endured biopsies that seem primitive today and left her with a 12-inch scar. That was followed by massive doses of cobalt radiation.

It would take many months to fully recover. “The next year or two was tough,” Heidi recalls. “My diagnosis brought an abrupt end to my dreams of becoming a press secretary. I was exhausted, and I found out that I could get sick at any minute.” When she attended a cocktail party, took one bite of an appetizer, and threw up–in a room of political insiders–she saw it as “a defining moment.”

“I knew I had to be careful, so I changed my diet by going into health food mode, and I began exercising again as soon as I could. I also realized that I didn’t like politics, so I went back to take more journalism classes and listened to my professor who said: ‘Just get out there and work.’ I focused on writing and got more confident.”

She had every reason to be confident. “I had moved from the west and was pretty intimidated when I started working in Washington, D.C.,” explains Heidi, who grew up in Utah and attended college in California. “Then I got Hodgkin’s and put my mind to improving my health. I knew I’d been through something other people couldn’t imagine. After Hodgkin’s, I was a different person–a much different person.”

Monthly Giving for a “Wonderful Cause”

Now living in Chicago and married for 30 years, Heidi knows that she followed her instincts after recovering from treatment. “I believe that participating in a research study back in the early 1970s changed my life,” she says. “Researchers were trying to determine why some people with Hodgkin’s survived while others passed away. For example, they checked to see if the survivors had been diagnosed at a lower stage or received more radiation. They concluded that those who survived had one thing in common: optimism. This was proven by the extensive psychological testing we had.”

Heidi has encountered late effects, mainly affecting her lungs. “My husband and I enjoy ballroom dancing –it’s our hobby –and were driving to a dance event in 2014 on a hot day when I began gasping for air,” she recalls. “I couldn’t breathe and realized I couldn’t dance.” An x-ray showed that her right lung was full of fluid, which was drained three times. An upcoming trip to China had to be canceled.

“No one had a clue why this was happening; pleural effusion usually is caused by heart failure or cancer. But a wonderful pulmonologist, Dr. Colin Gillespie, suspected it was due to the radiation I received. He performed a procedure where he placed talc in a way that kept fluid from clogging the lung. He wanted me to connect with other Hodgkin’s survivors and suggested I look for groups on FaceBook. That is how I found Hodgkin’s International.”

She appreciates the kindness and compassion she has observed in group members, as well as the resources the organization provides. “The newsletter has a good mix of research, and the website features Zoom meetings and lots of profiles,” says Heidi, who decided to donate monthly to Hodgkin’s International. “It’s a modest amount, but I wanted to help. Erin Cummings, who founded HI, is a huge part of why I give. I’ll continue to donate because it’s a wonderful cause.”

Heidi is motivated to understand all aspects of Hodgkin’s lymphoma, including what may have caused her to be diagnosed. “When I participated in that research study shortly after I was diagnosed, I asked one of the research staff if they had any clues on what causes Hodgkin’s.

“He noted that the nuclear weapons testing that occurred in the Arizona desert throughout the Cold War appears to have caused cancer in those who lived in that region. By coincidence, our family regularly drove between Utah and Arizona throughout the 1950s. While I don’t dwell on ‘why me?’ I found this fascinating. In a way, it made me feel that the cause of my cancer had been out of my control.”

For a woman in her early seventies, Heidi considers her health to be quite good. “Some days my lungs feel tight, and I have limited capacity. But I feel fine, I’m optimistic, and I’m enjoying life. If I can do a Viennese waltz today without gasping for air, it’s a great day.”

Most everyone can remember what was going on in their lives when they learned about a serious diagnosis. Maria Ragucci had graduated from Harvard Law School and was in her second year working at a top Manhattan law firm. “It was unbelievably stressful–24/7–and a difficult work environment,” she recalls.

It was during a regular medical appointment when Maria, age 27, heard the nurse practitioner say: what’s this swelling? “After she pointed it out, I looked in the mirror and saw that half my neck was distended. How could I have missed this?” X-rays revealed a mass in Maria’s chest, which led to a biopsy. “I was at work when the doctor called me and said: ‘You have Hodgkin lymphoma.’

“I didn’t know anything about Hodgkin’s, but I realized I needed to figure out what to do. I called one of the partners at the law firm and said, ‘I’ve got to go.’” It was 1983, and Maria soon understood that she would be faced with decisions. She wanted to have children, but MOPP–mechlorethamine, oncovin, procarbazine, prednisone–chemotherapy could have an impact on fertility. At the time, freezing one’s eggs was not an option. “Also, the tumor was wrapped around my heart,” she notes.

Maria started out at Beth Israel Medical Center in New York but also saw specialists at Massachusetts General Hospital in Boston and Sloan-Kettering Medical Center in New York. “Then a friend of mine, a doctor at Yale-New Haven Medical Center, suggested I see someone there,” she says. “The plan was to shrink the tumor with radiation, perform a splenectomy and then continue with radiation. They felt I had a 50 percent chance the treatment would work.

“What were my options? I didn’t want to have the chemo; this treatment would give me a chance to preserve my fertility. I gritted my teeth and just did it.”

Maria got through the treatment, went back to work, and, in 1996–about 11 years later–gave birth to her son, Thomas.

“The Uncertainty Is the Worst Part”

Her health was fine for a number of years. “But as I went back for all my check-ups, I began thinking about how I’d had all this radiation, and I knew radiation was bad. At one point, I asked my doctor what my life expectancy was likely to be, and he essentially answered, ‘The same as everybody else.’ Really?”

Maria decided to see a new oncologist at Sloan-Kettering and, for the first time, felt that someone was really going to manage her care. “Dr. Carol Portlock and her associate had read every page of my medical record, and they told me exactly how they were going to care for me. I remember sinking back into the chair and breathing a sigh of relief because I had been worrying. The uncertainty is the worst part.

“I was aware that breast cancer was a risk,” Maria says. “I was 50 when an MRI revealed a tiny spot. I couldn’t have more radiation, so I had a mastectomy, which was devastating at the time. But several months later, I decided to have a prophylactic mastectomy; I had my other breast removed. That was followed by a quick recovery emotionally. I didn’t want to face more testing and more anxiety.” Nor did Maria want more surgery. “I decided I didn’t want any reconstruction. I said: enough.”

It was many years before she met anyone else with Hodgkin lymphoma. “After a while, I decided to attend a support group,” she explains. “Sloan-Kettering had a women’s-only Hodgkin’s survivor group.” Someone in the group led her to Hodgkin’s International, which has come to mean a lot to her.

“It’s a dedicated resource that can direct you to the right care,” Maria says. “Hodgkin’s is fairly rare, and many patients discover that their doctor doesn’t have any experience managing the late effects. Once you find Hodgkin’s International, you realize you’re not doing this alone.”

These days, Maria lives in Rye, New York, with her husband and is facing the late effects of radiation fibrosis that has damaged her heart valves and caused severe deterioration of her upper-body muscles and nerves. “I have a lot of fatigue. I can’t lift things and can only walk short distances. Every day, I try to outsmart my fatigue.” She has gathered articles from the Hodgkin’s International website for when she may need a valve replacement.

Maria made a generous gift to Hodgkin’s International to show her appreciation and support for its mission: to be a place that is distinctly different from one’s hospital or physician’s practice–that is, a community of individuals who seek useful information, friendship, and understanding.

“Mostly, I wanted to support Erin Cummings, who established Hodgkin’s International,” Maria notes, “because I find her incredibly inspiring. Erin is dedicating herself to helping every one of us with Hodgkin’s by finding the best information and making it available. That’s very reassuring. I think a lot about where I direct my charitable giving. I tend to give to organizations that have a personal impact on people that I can see.”

As she reflects on her life, Maria knows that, compared to many individuals, she is lucky. “I’m 67 now and, with every year, I’m thrilled. I love getting older.”

“After my mother was diagnosed with Hodgkin lymphoma in 1968, she had a significant concern about recurrence,” says Rachel, a Unitarian Universalist chaplain and minister in the San Francisco Bay area. “It became a pretty constant, low-grade hum in the background.

“Back then, cancer wasn’t discussed in a very forthright way, so my mother didn’t talk about it. I was 18 years old before I knew what kind of cancer she had. I knew my mother had a scar on her chest, so I made the assumption that she had breast cancer, which can have a genetic component, unlike Hodgkin’s.”

Back then, late effects were neither understood nor described to patients. Diana Anderson was a reference librarian with a master’s degree from Simmons College. Her daughter, Rachel, was 15 months old when she was diagnosed.

“Our family lived in New Hampshire, so my mother had her tumor removed at a New Hampshire hospital but chose Mass General Hospital in Boston for radiation,” Rachel explains. “My parents waited before having more children because if you survived five years, your odds went up. At least, that’s my take on it.” Her two sisters are five and seven years younger than her.

“A Person Who Just Makes Tumors”

In the years after receiving radiation to the chest, Diana developed a tumor on her thyroid, then lymphoma cells in her stomach, and, finally, lung cancer. “The thyroid tumor–a Hurthle cell tumor–was benign, but my mother had the complication of a lung embolism during the surgery,” Rachel explains. “After, the surgeon said he could see tissue damage from the radiation. She came through that, but a couple of years later she developed stomach problems and was diagnosed with an ulcer before she was finally found to have a MALT [mucosa-associated lymphoid tissue] lymphoma.”

Diana had no context in which to understand the tumors she developed in the years after receiving radiation to the chest. “I remember my mother saying ‘Maybe I’m just a person who makes tumors,’” Rachel recalls. “Early on, no one was telling her the reason was that she had received an extraordinary amount of radiation in that general area.

“Similarly, my mother thought she was out of shape and criticized herself for not being more aerobically fit. Finally, when she was in her mid-50s, one of her doctors said, ‘Well, you were irradiated, so your lungs don’t work at 100 percent.’”

When Diana was diagnosed with Stage 4 lung cancer in 2002, her oncologist told Rachel’s father that it was probably caused by the radiation 35 years earlier. She died a month later, at age 64. “He assumed that her final illness was a result of the cure–a cure for which I am deeply grateful.”

Her awareness of the role that late effects had on her mother’s health prompted Rachel to begin doing research. “I wanted to find other adults who are children of Hodgkin’s survivors from the 60s and 70s because I’m curious about how those now middle-aged people understand the ways their parents’ diagnosis and survival shaped their life.” That research brought her to the Hodgkin’s International Facebook page and then the website.

“One of the things I appreciate about Hodgkin’s International is that, by sharing information with people about late effects, those people will know how their bodies were profoundly changed by treatment. I wish my mother had known that.”

Rachel knows that she had her mother for 35 years. “That’s significant, and I’m profoundly grateful,” she says, adding that, if her mother had been diagnosed several years earlier, she might not have received treatment that allowed her to raise her family.

In her ministry, Rachel says she works at “the intersections where life and death meet. Growing up, one of the few places where you could wrestle with issues of life and death and what it means to be human–to know that we are alive and are going to die–was in a religious context.

“Now I offer spiritual care and accompaniment to individuals considering their mortality. Since covid, I consult on memorial rituals, often coaching people as they hold their own rituals. I tell them: it’s never too late.”

Rachel says her gift to Hodgkin’s International accomplished a number of things. “I keep my mother alive by making a gift in her memory to an organization that is providing resources, support, information, and friendship to people around the world who share this common experience. In supporting the work they do, I’m helping them provide the information people need.

“I feel great about it,” she says. “My mother was a reference librarian; she provided people with information. It was a meaningful gift for me to make. Like all good gifts, the person who makes the gift receives something wonderful in the process.”