What I’ve learned about having cancer is it doesn’t get easier the second time around.— Mary Longhini
In 2012, my husband, Robert, and I were looking forward to starting the next phase of our lives and were feeling excited about the future. Although only in our 50s, we had decided to retire early from our full-time careers, move to our cabin in Hayward, Wisconsin, and find less stressful part-time work to supplement our retirement income. We were on our way to the cabin when a head-on collision with a car traveling on the wrong side of the highway took us off our planned idyllic course and catapulted us into an uncertain future of life-threatening illness and $65,000 in medical debt we never could have imagined.
Although the truck’s airbags likely saved our lives, the force of their deployment upon impact was so fierce that the left side of my face was bruised and six vertebrae in my neck were damaged. Within 3 days of the accident, my entire body was stiff and swollen, and a prescription of prednisone failed to alleviate my symptoms. With no relief in sight after a couple of weeks on the medication and several chiropractic treatments, I instinctively knew my ongoing problems were not related to the accident, but I never imagined I had cancer.
I had been feeling fatigued before the car crash, which I attributed to a daily 40-mile commute to my job, taking care of my elderly mother, and just getting older. But when lumps appeared on my hands and chest, I knew something serious was happening to my health. A tissue biopsy of one of the lumps determined I had Hodgkin lymphoma. I learned what I could about the cancer and started on a four-drug regimen of ABVD (doxorubicin, bleomycin, vinblastine, and dacarbazine).
A set of imaging scans taken of my upper body picked up masses between my lungs, under one arm, and in my neck and thyroid. However, I was assured by my oncologist that it would be extremely rare to have two cancers at the same time, and I continued my chemotherapy regimen over the next year. After completing my last round of the drugs in January 2014, I was given the stunning news that I, in fact, did have another malignancy—stage IV classic papillary thyroid cancer.
Ramifications of Cancer
What I’ve learned about having cancer is it doesn’t get easier the second time around. I fought really hard to be cured of my Hodgkin lymphoma. I did everything members of my oncology team told me to do, and I was elated on the day of my last round of chemotherapy.
I felt I had beaten this disease and that I could now resume the plans I had put in place nearly 2 years before and get my life back on track. It was devastating now to hear that I would have to endure a thyroidectomy and radical left neck dissection, followed by high-dose adjuvant radiofrequency ablation.
The treatment was painful, I was having trouble sleeping, and my energy level was sinking to a new low. And I was angry. I had switched my care to another oncologist for insurance reasons, but no one on my medical team seemed to be paying attention to my symptoms or offering me help.
Not long after I finished radiation therapy for my thyroid cancer, the disease recurred, and I had to have additional surgery and more radiofrequency ablation, which destroyed two of my salivary glands. By now, even though I was extremely tired, I was sleeping just an hour or 2 each night and my memory was failing.
Even though I saw my oncologist for regular checkups, it seemed to me that my complaints about the deterioration of my physical condition continued to be ignored. Finally, an endocrinologist referred me to a neurologist for enrollment in a sleep study, which showed that I was getting only 7 minutes of rapid eye movement (REM) sleep a night instead of the normal cycles of 90 to 120 minutes. I had periodic leg movement from chemotherapy-induced neuropathy at a rate of 54 to 56 times an hour, and I was severely sleep deprived. In addition, a magnetic resonance imaging (MRI) scan of my brain showed that I had cerebral ischemia, possibly caused by lack of oxygen to my brain from severe sleep apnea.
Taking Back Control
Throughout the past 4 years, I’ve asked myself what role I might have played in getting cancer and how my actions might have impacted the trajectory of my cancer journey. I ignored my symptoms when they first appeared, and I didn’t push hard enough with my medical team to get to the bottom of why I was feeling so ill for so long.
I’ve learned my lesson. I’ve switched to another oncologist—one who, hopefully, will pay more attention to my symptoms and act on them—and I’m enrolled in a patient perspectives study on quality of life following a thyroid cancer diagnosis. I’m thrilled to be making a contribution to the understanding of this disease for future survivors.
Living in the Moment
Although my health is somewhat better now, I believe my life will be shortened as a result of these cancers and all the treatment I’ve had. But rather than dwell on that possibility, I’m focusing my energies on living the best life I can every day and spending quality time with my family. Cancer has made me aware of how precious our time on this Earth is, and I don’t want to waste one minute of it. ■
Mary Longhini lives in Hayward, Wisconsin.