Nicole's Hodgkin Lymphoma Story

[Nicoles]

My name is Nicole. I’m 44 — I just turned 44, though I still catch myself saying 43. I’m married, a mom of three, and I live in New Hampshire. I work in digital marketing and have been in marketing for about 20 years. I love gardening and being outside — not obsessively, but it’s where I’m happiest. I love my friends, I love getting together, and I love the idea of getting back to that version of my life.

I have cancer.

After my last baby in 2021, I never quite bounced back the way I had with my other children. I was over 40, so I attributed a lot of it to age. I was exhausted — but I had three kids. I had thyroid issues and was trying to see an endocrinologist, but it was during the COVID backlog and it was nearly impossible to get in. Everything I was feeling could be blamed on my thyroid, lack of sleep, anxiety — the usual boxes doctors check.

The only tangible symptom I had was a strange rash on my arm. It would come and go. I couldn’t figure out what triggered it — wine, cheese, sun, breathing? That rash was the only visible thing. Otherwise, I was just deeply fatigued and not as strong as I used to be. I didn’t have night sweats, itching, fevers — none of the classic “B symptoms.” I was checking constantly, almost hoping for something concrete so someone would take me seriously. I just knew something wasn’t right, even if I didn’t have the words to explain it.

I felt off — my cycles were irregular, I felt sad but not depressed, frustrated and lost. I eventually started seeing a functional medicine doctor who also happened to be my neighbor. She ran extensive bloodwork, fixed my thyroid — which was significantly off — and worked with me on hormones, diet, sleep, and lifestyle. I spent months trying to optimize everything. My labs were perfect. On paper, I was fine.

But I still felt like something was wrong.

She suggested the Galleri multi-cancer early detection blood test. It’s typically for people over 50, but she was able to approve it for me. She reassured me it would likely ease my anxiety and warned me about false positives. I didn’t care. I was ready for any test. It wasn’t cheap, but I paid for it and waited two weeks.

When they called to schedule an appointment to discuss the results, I knew. I asked them to just tell me. The test showed a positive cancer signal related to lymph nodes. There are false positives, so that became the immediate conversation — but I knew this wasn’t one.

From there began the fight. I had to advocate for myself at every step — pushing for CT scans, insurance approvals, referrals. I kept meticulous folders of paperwork. The first CT scan showed a suspicious area, and eventually they found a mass behind my chest, about six centimeters. It wasn’t palpable. No one could feel it. That’s why no one had found anything.

I was devastated — and yet almost relieved to finally have proof.

I had surgery just before Christmas with a thoracic surgeon who had to carefully operate near my heart. Then I waited. The biopsy results took weeks and initially were inconclusive. Samples were sent out of state for further review. The waiting was agonizing. I worried constantly that it was spreading. During that time, I got the flu, and my immune system seemed to spiral. I felt worse after the biopsy than before it.

Eventually, part of the biopsy confirmed Hodgkin lymphoma. No stage yet — that would require a PET scan. I chose to go to Dana-Farber for treatment. Even then, nothing moved quickly. I had to chase down pathology results that were uploaded to my portal but not communicated to me. The system required constant follow-up. I felt completely alone and emotionally drained, even with answers.

Once I had confirmation, things finally began moving. I had a port placed and started chemotherapy four days later, even before my PET scan. The PET later staged me between Stage II and III, non-B, since I never had classic B symptoms. My treatment plan was ABVD chemotherapy for six cycles — 12 infusions.

I approached it like the biggest project of my life. I attended chemo education, researched reputable medical sources, and prepared as much as I could. My first infusion was physically manageable but mentally overwhelming. Over time, the side effects became more real: dehydration, constipation from anti-nausea meds, profound fatigue. I call it a “chemo coma” — it feels like someone is physically weighing you down.

I stayed hydrated constantly, took Epsom salt and baking soda baths, drank electrolyte fluids, and tried to flush everything out in the first 48 hours after treatment. I recommend chewing ice during the Adriamycin portion of ABVD and using a baking soda and salt mouth rinse to prevent mouth sores.

My appetite has stayed strong. I eat what I can, sometimes comfort food, because I’m grateful to be hungry. As treatments continued, recovery between cycles became harder. By the third or fourth day after infusion, frustration hits. I force myself to move forward.

My mid-treatment PET scan showed the chemotherapy was working — shrinking the smaller nodes and slowly reducing the main mass. Knowing there are multiple treatment options for lymphoma has given me comfort. I was less anxious going into the second PET because I had done my homework. I relied on credible medical institutions and organizations like the Leukemia & Lymphoma Society rather than random internet searches.

The hardest part through all of this has been the loneliness — even when surrounded by people. When you’re sick, you feel out of control. Getting information, advocating for yourself, and understanding your options gives you some of that control back.

I hope that one day cancer screening blood tests like Galleri become more accessible and covered by insurance. Early detection changes everything. When you catch something earlier — even something aggressive — you have more control, more options.

If there’s one thing I would say: you are not alone. It feels like you are. It’s isolating and overwhelming. But breathe, do your homework, advocate for yourself, and treat it like the most important project of your life.

[Deep]

Nicole, your strength and advocacy are extraordinary. Navigating Hodgkin lymphoma with such determination — especially at Dana-Farber Cancer Institute — shows incredible resilience. Your honesty about loneliness and control will help others feel less alone. Wishing you continued healing and steady strength ahead.