Ten years since diagnosis - a cancer story

A little break from my radio silence to mark an important milestone. Today is ten years to the day since I was diagnosed with Hodgkin’s Lymphoma. In this blog, I’ve referred to having had cancer many times, but I’ve never told “the cancer story.” So today seemed a good day to write it – one in which I am celebrating that this illness is a thing in the long-distant past.

The short version of the story is that I was diagnosed with a very treatable cancer. I received standard chemotherapy for my disease. I have not had any problems (minus a few scares) since. Unless you count the infertility. Which no one can link back directly to the chemotherapy but everyone agrees was bad, seemingly very bad, for my ovaries.

The slightly longer version of the story is that I was diagnosed with Hodgkin’s lymphoma at age 27. I had gone in to see my internist for something else, something relatively minor. But while I was there, I asked her to look at a swollen lymph node on my neck, a lymph node that had been there for at least three months. I was embarrassed to show her. I figured I was being one of those “worried well” types. She looked at it and felt it and excused herself. She came back into the room with another doctor whose lab coat said his name and then “Oncology.” I immediately disliked him. They said the lymph node needed to come out ASAP. They also said I needed a chest X-ray. Stat.

Once they started asking questions, it became clear that a number of other symptoms that I’d thought were unrelated and minorly annoying were in fact symptoms of cancer. I’d lost approximately 10 lbs. in the past few months (I thought this was great). I was tired and had stopped exercising (I thought I was lazy). I had terrible itching of my lower extremities (I thought that I needed to switch laundry detergents and was being “sensitive”). I had low-grade fevers (I didn’t think much about this at all).

This appointment happened late on a Friday afternoon, and by Monday afternoon, it had been confirmed (via excisional biopsy) that I had Hodgkin’s lymphoma in my neck and also had a 5 cm mass in the space between my lungs, in my mediastinum. Over the next several, excruciating days I learned that the cancer had not spread below my diaphragm (which was good) and was not in my bone marrow (which was very, very good, although painful to tap into my hip bones to find out).

After getting a second opinion (yes, even a decade ago I was a fan of the second opinion) and weighing different treatment options, I opted for ABVD (a combo of four drugs: adriamycin, bleomycin, vinblastine, and dacarbazine) mainly because it would mean that I might be able to dodge radiation treatment. From the research I had done, chest radiation in under 30s women is best avoided because of increase in breast cancer risk (also not so good for your heart and lung function). My doctor agreed to do the ABVD and take a wait-and-see approach on the radiation. Giving it only if necessary. Fortunately, it didn’t turn out to be needed.

So I underwent six months of ABVD treatments. One treatment every other week. And according to my medical records I sailed through unscathed. Most of the notes say “Tolerating treatment well.” And now that it’s almost 10 years out, I’ll agree. At the time, I found the vomiting, hair loss, fatigue, and nausea very difficult. But it got me my life back.

It remains uncertain if the chemotherapy impacted my fertility. All of the doctors I’ve consulted say that out of the options I had available, ABVD was the least toxic to the reproductive system (MOPP for instance, another regimen, would almost certainly have rendered me sterile). There is little research on subfertility, which is technically the category I fall into (I’m not in menopause/premature ovarian failure and I’ve been pregnant a few times now, but with abnormal embryos).

Despite the lack of research evidence, all of my doctors agree that the medications were not good for my reproductive health. I lost my period for over a year during and after treatment, which they say indicates that my ovaries were damaged (although able to recover). I just have to hope that there are a few good eggs in there somewhere.

At this point, the Hodgkin’s is a long-ago experience. One that has shaped me definitely, and influenced my career path, and that helps me understand patients who are grappling with a number of difficult medical realities. I really wouldn’t change having gone through it. Except for the fertility part.

I try to remember to not be greedy. I have my life, which I would not have without the treatment. And having gone through cancer has given me several gifts, including an incredible appreciation for my health and my strength, which is something I might not have learned for a long time.

But still. These days, four IVFs later, it's hard not to wonder what if. If I hadn't had cancer would I be a mother by now? And since I have had cancer, will I ever be? But I try not to linger there, instead trying to stay grateful for a decade of life now, since my diagnosis.

Mo