Author + information
- aCancerRoadTrip, Santa Fe, New Mexico
- bDepartment of Cardiovascular Diseases, Mayo Clinic, Rochester, Minnesota
- ↵∗Address for correspondence:
Dr. Sherry-Ann Brown, Mayo Clinic, 200 First Street Southwest, Rochester, Minnesota 55905.
In May 2009, I was at a wine-tasting weekend in Sonoma, California. My phone rang. I was slow in picking it up. My oncologist had left a message. The message was curt and to the point: You were rejected by Stanford. You do not qualify for the clinical trial. Your cancer was misdiagnosed. Call the office on Monday.
I was devastated. Over the next 5 years, I dealt with 3 rounds of chemotherapy to treat my lymphoma, now diagnosed by Stanford as nodal marginal zone lymphoma. The first treatment was Rituxan (Genentech, South San Francisco, California). It failed spectacularly and was accompanied by intolerable side effects (severe shortness of breath; heaviness in my chest; all-over body rash and hives). Yet it was to be part of every treatment that ensued and a brief attempt at maintenance therapy.
After Rituxan came 6 rounds of RCVP (rituximab, cyclophosphamide, vincristine, and prednisone). I had a brief remission as a result of the RCVP, but the cancer came back in short order. Tumors grew throughout my body, one wrapping itself around my aorta. Another at the top of my spine terrified me. I simply could not have cancer migrate into my brain.
The next round of treatment was Rituxan and bendamustine, a (then) newly approved therapy for general follicular lymphoma, of which marginal zone lymphoma is a subset. Marginal zone lymphoma is fairly rare; there was limited research done for this type of cancer.
This round of chemotherapy was supposed to be easy, but it wasn’t. My hair started falling out toward the end of treatment, and the hair loss continued for months. Within a few months of finishing this round of chemotherapy, my hip failed, and I developed systemic joint problems. A hip replacement had complications, and I was unable to walk well or lift my leg for the better part of a year. The orthopedic surgeon suggested steroids. I did yoga.
Cancer brought many changes into my life. My friends from sports had fallen away. A 5-year relationship broke up. And a business partner betrayed me in a way that financially disrupted my entire life. With this stress, my hair started falling out again, and I was vomiting blood. My oncologist suggested a host of tests and suggested the possibility of new or recurrent cancer. I simply could not take any more. I had lost my life. Whatever time I had left was not going to be spent in hospitals.
So I hit the road with my 60th birthday approaching, with no idea of what the future held. Along the way, I fell into the rhythm of travel. I worked hard to let go of the betrayals that sent me on this trip. I worked hard to find peace. Every day I found 5 things to be grateful for, and I meditated.
Fast forward 2 years. I steeled myself; found a doctor; and got a lymphoma panel done. And it was normal. For now. Because I live with the word “incurable” each and every day. More people are living with and beyond cancer. The experience extends beyond treatment to a host of psychological, social, physical, financial, and spiritual issues that often accompany a cancer diagnosis. From my experience:
Fear of recurrence: I don’t dwell on this; I’ve learned to live in the present. But not a day goes by where I don’t think about when/if the cancer returns, what will I choose to do about it.
Physical limitations with life-changing consequences: My life has radically changed, from that of a very good and motivated weekend athlete to a more sedentary lifestyle. I still walk and do some light hiking, and I work out with a trainer, but my leg with the new hip drags. I will never play racquet sports again.
“Chemo” brain: I was told by my oncologist that chemo brain didn’t exist. Yet I could not remember or enter a 4-digit pin checking out at Costco one day. I simply burst into tears. I have a strong math background, a degree in finance, and yet a simple 4-digit sequence of numbers was impossible for me to recall.
Cognitive difficulties: With a background in finance (Wharton Business School), Excel spreadsheets were fun for me. Now I have trouble following linear detail. I have to focus very hard, repeat things, write them down, and triple-check that they are correct.
Weight loss/gain: The inability to walk for a year resulted in muscle loss and weight gain. Working out with a trainer has helped with the muscle loss but the weight stubbornly remains. I simply don’t have the stamina I once had.
Loss of social support systems: People didn’t know what to do or say, so they tended to simply be silent. One friend, a doctor who lived up the street, told me that every time she drove by my house she thought of me. But she never once e-mailed, texted, or called.
Loss of life-long interests: Sports were an integral part of my life. They no longer are.
PTSD: It is overwhelmingly difficult for me to even seek medical help. There are simply too many bad memories. A recent trip to Africa required vaccinations. I was stunned by my fear of needles. Needless to say, I toughed it out, and the second round of inoculations went smoothly. I will not be ruled by past experiences.
Financial difficulties: Cancer has forever set my life on a different path. In 2009, the stock market crashed, the housing market crashed, and with it my financial future as I faced a lifetime of dealing with cancer and the incredible cost of treatment. Even with insurance, I was spending about $20,000 per year for premiums, deductibles, and ancillary services (e.g., acupuncture for pain and joint issues). And I was often not able to work.
I need to end this on a positive note. I am resilient, creative, and tough. I have totally remade my life, discovered and cultivated new interests, and found new and lasting friendships. I have a new company (www.CancerRoadTrip.com) that is giving healing journeys to others as we seek to find answers to life following cancer treatment.
As you provide treatment for your patients, I hope you also consider the personal, financial, and spiritual costs of treatment. In your role as doctor, you are not expected to magically make it better. No one can do that but the patients themselves. But listen to and validate your patients’ concerns. Lend a few moments of time to simply be there for someone. Sometimes that’s where the seed of healing is planted.
Both authors have reported that they have no relationships relevant to the contents of this paper to disclose.