“The bad news is you have Hodgkin’s disease. The good news is you will be cured and live at least 25 more years.”
While that was not exactly what my doctor said when I received my diagnosis in August 1992, it is, I’m profoundly grateful to report, what I’ve experienced.
It all began when I felt a lump about the size of a large marble near my left collarbone. It happened while I was eating a Greek salad for dinner at my favorite hometown haunt in Ann Arbor — Del Rio, a legendary hippie bar that has, sadly, long since closed. My husband and I had just returned from a long weekend with friends on Lake Michigan, and the discovery instantly yanked me out of vacation mode and into what soon would become a whole new reality: living life in the shadow of cancer.
In retrospect, I realized “it” actually had started long before. I’d been experiencing classic Hodgkin symptoms — drenching night sweats, weight loss and itchy skin — for several months prior to noticing that ominous lump. At the time, I didn’t think anything of them.
The next day I scheduled an appointment with my primary care doctor, who told me the lump was a swollen lymph node, most likely caused by an immune response to an infection of some sort. But then, in the next breath, he said it also might be a sign of lymphoma, a cancer of the immune system. Or, he offered casually, it could be metastatic cancer.
Metastatic cancer? Lymphoma? Are you kidding me?
After hearing those words, everything sort of went blank and I had a hard time hearing the rest of what my doctor had to say.
I was a healthy, recently married 31-year-old in the prime of life with no immediate family history of Hodgkin lymphoma or any other kind of cancer. I exercised. I ate healthy. I didn’t step on cracks or walk under ladders. How could it be?
I later learned that there’s a connection between Hodgkin lymphoma and Epstein-Barr virus, or EBV, which causes mononucleosis. I had been diagnosed with mono as a teen, so perhaps that was the cause. According to the American Cancer Society, the exact role of EBV in the development of Hodgkin lymphoma is unclear; many people are infected with the virus, but very few develop the disease.
My doctor recommended waiting two months to see if the mysterious mass would go away on its own before doing a needle biopsy. Reluctantly, I went home and tried to stay positive — and be patient.
A few days later, while gathering magazines for the recycle bin, a copy of “Men’s Health” slipped from the stack. It fell open to an article about male Hodgkin lymphoma survivors. That’s when I knew instinctively, deep down, that it was cancer, and most likely lymphoma.
At first, before I knew for sure that the lump was cancer, I was really scared. I think not knowing was, in a way, harder than knowing. One day while I was crying and generally losing it, my husband told me there was no sense in getting upset or worrying until we knew for sure what we were dealing with. That was like a slap in the face. It told me that it wasn’t safe to show my fear. My husband and I later divorced, by the way.
Following my intuition — and an unlikely oracle
Despite my fear, I had no intention of waiting two months to find out if my intuition and “Men’s Health” oracle were right. At the time, I worked in communications at the University of Michigan Medical Center. I knew the importance of early cancer diagnosis for the best odds of survival. I also knew the organization’s top lymphoma expert, so I gave him a call. He invited me to come by his office that day. He took one look at the lump and immediately scheduled a surgical biopsy.
I’m so glad I followed my instincts and made that phone call, and I’m so grateful to that wonderful oncologist who pulled some strings to get the tumor quickly removed and examined.
A few days after the biopsy, I did get a “good news/bad news” phone call while at work. The bad news: it was indeed cancer. The good news: it was a highly treatable kind of lymphoma — “nodular sclerosing Hodgkin disease.”
After I hung up, I went to a staff meeting and just sat there, trying to digest the news. The conversation buzzing around me seemed so comforting and normal, and yet I knew that my life would never again be the same. Work was a refuge, a welcome diversion. I held off on telling my colleagues for as long as possible, because I didn’t want them to feel sorry for me or treat me different than before.
Some of my colleagues jokingly chalked up my recent weight loss to being a newlywed in love. If only they knew.
While the diagnosis came about fast, the staging process — assessing the extent to which the cancer had spread — took more than a month of seemingly endless tests, including CT scans, PET scans and bone-marrow biopsies. Another test I had was a procedure called a lymphangiogram, a special X-ray of the lymph nodes and vessels that involves lying completely still for a seeming eternity while a peacock-blue dye is injected into the lymph channels through incisions on top of each foot. It wasn’t painful, but having to lie still for so long was surprisingly difficult. I was rewarded with blue pee and poop over the next few days, so it was definitely worth it.
All this poking and prodding was topped off with exploratory abdominal surgery, during which my internal organs were inspected and biopsied for signs of cancer. At the same time, in an attempt to preserve my fertility in the event we ever wanted to try for a baby, the surgeons repositioned my ovaries to shield them from the radiation therapy that I’d later receive. They also removed my spleen, the largest organ of the immune system, because at the time this was thought to help prevent cancer recurrence. The operation left me with a compromised immune system, more prone to infection than before.
Recovery was a long, painful process, and I lost three weeks of work and productivity. However, I gained a 12-inch scar down my middle, which marked the end of bikini seasons for me — a small sacrifice.
Contributing to medical research
Prior to the surgery, my oncologist strongly encouraged me to participate in a clinical trial to test whether a PET scan, a noninvasive imaging test, could do as good or better a job as open surgery for determining whether the cancer had spread to distant organs. I thought, why not — it would help science and also provide yet more clues regarding the progression of the disease.
Thanks to that study and similar ones that followed, abdominal surgery for the staging of Hodgkin lymphoma has fallen out of favor, and the majority of patients today no longer have to undergo the procedure as a routine part of treatment planning. PET scans have replaced the need for surgery. I’m happy to have helped contribute to that finding.
Also thanks to research, most Hodgkin patients today no longer have their spleens removed as a precautionary measure. Studies have shown that splenectomy does not reduce the risk of recurrence, so patients now get to keep their spleens — and their immune systems — intact.
The ongoing uncertainty of the lengthy staging process was more difficult than the treatment. I was on pins and needles for weeks, waiting for the phone to ring with test result after test result.
Luckily, because the cancer presented itself in a way that couldn’t be missed (at least by me and my oncologist, if not my primary care doctor), it was caught relatively early, in the middle of the cancer-progression spectrum. There were a number of tumors, in addition to the one I had discovered myself, but they were confined to the chest area, above the diaphragm. If I had waited months for a biopsy and the cancer had spread to lymph nodes below the diaphragm, my prognosis may have been much different.
Undergoing treatment, with a little help from Mary Tyler Moore
The daily radiation treatments were a piece of cake — at first. For the initial few weeks I experienced no side effects, and since I worked at the medical center where I was being treated, it was easy to fit the appointments into my schedule.
However, radiation exposure is cumulative, and soon the treatment side effects started presenting themselves — from partial hair loss, which left long strands of hair on my pillow, to my fearless taste buds turning wimpy, no longer able to tolerate my favorite five-star Indian curry.
Toward the end of the two-month treatment regimen, the skin on my neck and torso became lobster red and blistered, like the worst possible sunburn you can imagine, times 10. I wore turtlenecks to cover up the burns, but eventually I couldn’t endure the sensation of clothing against my skin, so I spent the last week between treatments confined to our apartment, my torso draped in nothing but soothing, cold compresses soaked in Domeboro solution. I tried to distract myself from the pain by binge-watching a marathon of “The Mary Tyler Moore Show.” To this day, I associate that show with radiation burns and the vinegary, astringent smell of Domeboro. The upside of the treatment: the hair on the back of my head grew back, at first in tight little curls, but my underarm hair didn’t — possibly my favorite long-term radiation side effect (in addition to being alive, of course).
My last radiation therapy appointment was Dec. 31, 1992, and I looked forward to putting it all behind me and starting the new year fresh, albeit punctuated by frequent follow-up doctor visits and CT scans, which grew further and further apart the longer the cancer remained at bay.
A surprise around every corner
While the specter of recurrence palpably hovered over me those first several years after treatment, it really hit home during a routine follow-up appointment about two years into remission. One of my doctors blithely said that even though I had responded well to the therapy, had regained the weight I’d lost and my blood counts looked good, “I shouldn’t be too confident,” he said, because in his experience, “the ones who sail through tend to relapse the soonest.” I couldn’t believe my ears. I was too shocked to say anything, but in retrospect, I wish I had. I'm sure he didn't mean anything by it, but it stung.
This is just one example of what it’s like to live in the shadow. You never know what’s going to leap out and surprise you, be it a cancer scare (like being up all night with mysterious bone pain or worrying that a headache may be a brain tumor) or a callous, offhand comment from someone who damn well should have known better.
After I reached the five-year mark without any sign of cancer, my doctors said the chance of it coming back was negligible and that I no longer needed regular follow-up appointments. With a bit of trepidation, but also jubilant excitement and a heart full of gratitude for the research-based treatment delivered by my team of wonderful caregivers, I bid goodbye to the cancer center and went back to just seeing a primary care doctor once a year (but you can bet it wasn’t the one who blew off my initial lump).
Since my encounter with lymphoma, cancer has touched my life profoundly several more times. My mom and a dear friend and colleague died from colorectal cancer. My dad had prostate cancer. While it didn't kill him, the side effects of treatment were a real, um, pisser. Currently, a good friend is facing down stage 4 breast cancer with amazing grace, humor and bravery, and another is powering her way through adrenal cancer with incredible endurance and strength.
Another lifetime ago
Today, the whole experience feels like it happened another lifetime ago, to another version of me. Perhaps it was. I have since gotten remarried to a wonderful, caring, supportive man and have moved to Seattle, where I’ve lived for more than 20 years. For nearly as long, I have worked in communications at Fred Hutchinson Cancer Research Center, a place close to my heart for obvious reasons. I am inspired every day by the Hutch’s incredibly brilliant scientists and dedicated staff, who work together toward advancing its lifesaving mission.
Even though I work at a cancer center, I no longer dwell on the possibility of recurrence or the development of a second cancer related to all the radiation I received. I now can go long stretches without even thinking about the fact that I had Hodgkin disease. Dare I say, the shadow has lifted. But I do welcome occasional opportunities to be a patient advocate for cancer-research funding, participate in a research-fundraising event or share my story with fellow survivors in the hopes that it can help someone else.
For anyone who is grappling with a cancer diagnosis, undergoing treatment or living in the shadow, here’s what I’ve learned in hindsight, 25 years on:
- Follow your instincts; be your own best advocate.
- Don’t be afraid to ask questions. There’s no such thing as a dumb question when it comes to your life. A great cancer-information resource is the National Cancer Institute’s Contact Center.
- Take a notebook and/or digital recorder with you to each doctor appointment (or better yet, bring along a friend or loved one to help digest the information and take notes).
- Get a second or third opinion, if necessary.
- Participate in medical research if the opportunity presents itself.
- Support cancer research in whatever way feels appropriate, whether that’s donating to your favorite cancer-research organization or participating in a fundraising event.
- Don’t be afraid to show your vulnerability or ask for help.
- Appreciate each and every day. Live in the present, because that’s all any of us ever have.
But most of all, have hope. You can't have a shadow without the sun.
— Kristen Lidke Woodward is a scientific communications editor at Fred Hutch.
