I have felt true jubilation a handful of times in my life. The first was when I received my admission letter to medical school, even though I was an atypical applicant. (It was the day Neil Armstrong walked on the moon, July 20, 1969.) The next was when I met my wife-to-be at music night at the Caspar Inn, and later when my two children were born. Most recently was when I found out that my positron emission tomography (PET)/computed tomography (CT) scan from thighs to eyes showed “complete resolution of abnormal metabolic activity previously noted to be above and below the diaphragm with no metabolic evidence of recurrent or residual malignancy.” My cancer was in remission.
Surviving cancer has taught me several things.
1. It’s really expensive to get sick. My original PET/CT scan, when I was first diagnosed with lymphoma, showed “Metabolic lymphadenopathy seen above and below the diaphragm including involvement of the mediastinum, bilateral axilla, chest wall and pleura, retroperitoneum, peripancreatic lymph nodes, mesenteric lymph nodes, inguinal lymph nodes, and iliac chain lymph nodes,” in addition to “bilateral hydronephrosis due to bulky retroperitoneal lymphadenopathy and likely partial bladder outlet obstruction.” That’s a lot of tumor, but it’s amazing what today’s drugs can do. It’s also amazing what they cost. One of the meds that boosted my white blood cell count to normal in three to four days after chemotherapy, instead of waiting for my marrow to do it in seven to eight days, was billed at $17,000. Medicare allowed $5,000 and paid it. When I asked my oncologist why, he said that if I was admitted to the hospital with a life-threatening infection between days four to eight, it would cost them a lot more. That made sense and made me glad I was over 65 when I got cancer and had insurance that paid everything. I almost never saw a bill, and when I did it was in error because the provider hadn’t billed my secondary or my secondary hadn’t paid their full amount. (Note to those in Washington: Don’t touch my Medicare!)
2. Returning to normalcy is a slow process, but it will happen. Things are starting to come back. I’m able to ascend hilly ground without using a walker for safety. After months with no facial hair, I actually had to shave my upper lip and chin the other day, but I can’t tell if what’s coming in is blond (wishful thinking) or grey (more likely). I’m curious whether the hair on my head, when it fully arrives, will be straight or curled. Right now, it’s soft and fuzzy. My experience as a hairless person has given me a new appreciation for hats and why bald people wear them. I’m looking forward to shedding the assortment of caps I’ve worn because of self-consciousness and to keep my head warm and protected. My eyebrows are going gangbusters, and my lashes are poking through. I’m itching to get back on my mountain bike and attack the single track, but I can’t risk a fall, so for now I’m content to ride up and down our county road cautiously on my small electric bike using the juice when my legs tire. I’m patiently awaiting my robust bone marrow to replenish my red blood cells and fill my tank, which at last count was below capacity.
3. No one knows their patients like a primary doc. I’ve been back to work for several weeks and glad to be out of a forced retirement. My patients are delighted to see their old doc back on the job, and one said, fearing my impending mortality, he was happy he wouldn’t have to find another doctor. I’ve been greeted with lots of smiles and hugs and well wishes. It has touched me to see how much I was missed; even though my surrogates were extremely competent, they hadn’t spent years getting to know these people like I have. They couldn’t say, “How’s your mother doing? Has she had her colostomy taken down yet?” or “Has your son had surgery for his familial adenomatous polyposis?” or “Have you had any help caring for your sister with Alzheimer’s?” not to mention such matters as recovering from the death of a partner, relative, friend, or favorite pet, dealing with problem children, coping with stress in the workplace, or any of the myriad life events that we doctors are privy to. This is the stuff that doctor-patient relationships are made of.
4. Nothing erases worry like optimism. At my visit with my oncology doctor where my remission was made official, I asked to have my port flushed and heparinized. I expected to have it in indefinitely for venous access in case of recurrence, but my oncologist surprised me. “Tell Dr. Susman to take it out,” he said. “It’s a foreign body, and you risk infection. I don’t expect that you’ll need it again.” His optimism was contagious; if he’s not worrying, why should I?
My wife and I received hugs on our way out of the infusion center, and I made a perfunctory appointment for a three-month follow-up visit. After four-and-a-half months of brutal chemotherapy, I was done.
5. Local care has its advantages. When I told friends and patients about my cancer treatment, many asked if I had been treated at one of the prestigious institutions in our state. “No,” I said, “I did it all at our small community hospital.” I didn’t need radiation or surgery, so everything I did need was here, close to home. Not knowing what to expect from my chemotherapy made not having to travel a big plus as well. I was grateful to have been spared any nausea or vomiting, pain, headaches, or inpatient hospitalization from my drugs. However, I was dealt dyspnea from severe anemia, pneumocystis carinii pneumonia, a 30-pound weight loss, weakness and fatigue, a facial rash requiring antibiotics, constipation, pedal edema with distal extremity neuropathy, and an almost total loss of body hair. When I told my local oncologist I was surprised that I no longer had to shave, he replied, “You’re welcome.”
6. Survival is not a lone effort. After getting the news of my remission, I wrote a letter to our local newspaper thanking the infusion and pharmacy staffs and my wife for saving my life and my colleagues for saving my practice. Surviving cancer is no easy task, and the folks who helped need to be recognized and acknowledged.
I can’t know how long I will be in remission, but I do know this: “Life is like a box of chocolates,” as Forrest Gump famously said. “You never know what you’re gonna get!”