Memento Mori
I have an incurable cancer…and I’m alive
I have multiple myeloma, and I’m in remission. I start this essay off with those words because that’s what I wanted to see when I first Googled “multiple myeloma.” Instead, my search results were articles about incurable blood cancer and dated mortality rates. That’s a gut-wrenching way to start your cancer journey. If you or someone you love has been diagnosed, this is for you. Everyone’s case is unique, and your experience and outcomes may be different. This is just my story.
The Crash
In June 2023, while at the driving range, I suffered what I thought to be a pulled muscle. The pain was bad enough for me to get it checked out. It felt like something was wrong with the muscles around my lower ribs. X-rays came back negative for a fracture, and the physician’s assistant told me it was a pulled muscle that may take months to heal. The pain eventually subsided, but whenever I tried to work out or stretch, the pain would flare up. It was frustrating, but at 58, I assumed my body just didn’t bounce back like it used to. The on-and-off pain persisted for several months.
On November 8th, I was driving home from work when traffic unexpectedly stopped. I slowed to a stop, but the car behind me didn’t notice the traffic and rear-ended me. The impact was significant, but both cars were still drivable. The pain I felt in my lower back and around my ribs was excruciating. It was difficult for me to stand up. After exchanging insurance information and filing an accident report with the police, I went straight to the emergency room. The ER staff did blood work and took X-rays. They also did a CT scan. I was lying in the ER when the nurse came in and told me the results of the scan. She said there were numerous lytic lesions (spots where the cancer had eaten into the bone) on my ribs and spine and that I needed to consult with an oncologist as soon as possible. She said it so matter-of-factly that the word oncologist didn’t register at first. “Oncologist?” I thought, “No. Wait, what?” She handed me the report, and I saw the words “probable multiple myeloma.” The pain in my lower back, it turned out, was literally killing me. If it weren’t for the car accident, I would have lived with the pain for several more months while the cancer progressed.
When I got home and Googled multiple myeloma, the first word I saw was “incurable.” I found website after website with survival statistics at one and three years. I thought of my daughters. One was a college freshman and the other a high school senior. I thought of my parents, who were already dealing with my sister, hospitalized due to a stroke. And I thought about my girlfriend. This wasn’t fair to any of them.
The accident was on a Wednesday. I scheduled an appointment with an oncologist for the following Monday. Before the appointment, I got more lab work done. The lab results started coming in over the weekend, and I could see them in my online medical charts. The spike in monoclonal protein (an abnormal protein produced by the disease) and calcium in my blood confirmed the ER findings. Or rather, my Googling of the results confirmed the diagnosis in my mind. I had to sit with the results until Monday. I shared the results with my girlfriend, who wasn’t ready to accept that it was cancer until we met the oncologist.
The Diagnosis
When we met with the oncologist, he confirmed that the results most likely pointed to multiple myeloma. He wanted to do some additional tests, like a bone marrow biopsy and PET scan, to confirm the stage and aggressiveness of the disease. It’s not that I was relieved, but I appreciated the certainty of knowing what was wrong. Because with a clear diagnosis comes treatment. I was eager to get on to the treatment. I knew, from my online research, that there was no cure. However, the oncologist added a useful clarifying caveat. Yes, there isn’t a cure for multiple myeloma, but it is treatable. He added that, given continued advancements in treatment, it’s plausible that I could live another 15 to 20 years. That’s a considerable change from the one to three years I assumed I had left.
The quickest way to schedule a bone marrow biopsy was to have it done in the doctor’s office under local anesthetic. So I went that route. I don’t know if I’d recommend it. It wasn’t too painful, but feeling the pressure of the large syringe working its way into my hip bone was unsettling. There was a weird feeling when the marrow was suctioned out of my hip. The other tests were a PET scan and a 24-hour urine collection. As I was still keeping my diagnosis a secret, I had to hide my jug of urine from my daughter at home.
The tests confirmed the diagnosis. I had standard-risk multiple myeloma. Standard risk is the most common and least aggressive form of multiple myeloma, and it typically responds well to treatment. At that point, I told my boss because I knew I’d need to be out of the office for weekly chemotherapy sessions. I also discussed telling my daughters with my ex-wife. We agreed that it would be better to do so after the holidays and after I started treatment. I told my brother and said I would tell my parents after the holidays. By mid-December, I was ready to start chemotherapy.
Induction
Treatment for multiple myeloma is in three stages. The first is induction, followed by consolidation, and then maintenance. Induction, designed to control the disease, consists of several weeks of chemotherapy. Consolidation is a stem cell transplant, and maintenance is continued immunotherapy.
I started chemotherapy with bortezomib (Velcade) once a week at the hospital’s outpatient infusion center. My treatment also included a regimen of lenalidomide (Revlimid) and dexamethasone. My body handled the chemo relatively well. My infusions were on Thursdays, so the side effects hit hardest over the weekend. Nausea was the primary side effect, though I only had violent vomiting once early on. Other side effects were heartburn, diarrhea, constipation, and an itchy rash on my arms, neck, and head. Additionally, my tongue darkened, and food started to taste different.
I kept what was going on from my daughters and parents because I didn’t want them to worry. I didn’t want them to mirror my initial reaction in the ER and think about me dying. But death was on everyone’s mind nevertheless. My sister unexpectedly passed away right after the holidays. With my sister’s death, I felt I needed to keep my diagnosis hidden from my family a little bit longer. In a sense, keeping that secret robbed me of the ability to properly mourn my sister with my family. I scheduled my trip to visit my family around my chemo treatment. While at the funeral, I not only grieved my sister’s passing, but also worried about how my diagnosis would deepen my parents’ grief.
Although the drugs were wreaking havoc on my body, my blood work showed that they were having the intended effect on the cancer. A subsequent bone marrow biopsy and PET scan confirmed the progress. At this point, I also started getting denosumab (Xgeva) injections to strengthen the bones damaged by the cancer. Nearing the end of the induction phase, I felt comfortable telling my daughters about my diagnosis. It was easier to tell them at that time because I could add that I had been in treatment for a couple of months and it was working. When I completed the induction phase and my blood work was all clear, I told my parents about my diagnosis.
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Consolidation
Some patients go directly from induction to maintenance. This is usually the case for older patients and those who otherwise aren’t physically suited for a stem cell transplant. According to my lab work, I appeared “cancer-free.” So a part of me wanted to go straight to the maintenance phase and avoid the two weeks in the hospital for the stem cell transplant. However, in my case, consolidation was the recommended course of treatment because an autologous stem cell transplant typically leads to a longer period of remission.
To prepare for an autologous stem cell transplant, it’s necessary to harvest your healthy stem cells. This is known as apheresis. To prepare, I had to inject myself with tbo-filgrastim (Granix), which stimulates white blood cell/stem cell growth. Plerixafor (Mozobil) was used to move the stem cells from the bones into the bloodstream. The day before the procedure, I had a catheter placed near my collarbone. During the harvesting, my blood was pumped from the catheter into a sort of dialysis machine that separated and collected the stem cells.
This took all day. I thought I would be able to just relax and read a book during the apheresis, but that wasn’t the case. I needed to stay extremely still for the machine to work properly. It was hard to be comfortable in the hospital bed, and stopping the machine to use the bathroom was out of the question. By the end of the harvesting, I was physically and emotionally drained. It was the hardest day of treatment up to that point.
In addition to the eight uncomfortable hours in a hospital bed, I think the pending transplant hospitalization was weighing on me. I was also apprehensive about the timing of the transplant. My youngest daughter graduated from high school in June, and I completed the induction phase in May. Luckily, the time it took to get authorization for the transplant from my insurance pushed the procedure date to July, after the graduation.
Stem Cell Transplant
On the 2nd of July, I was admitted to the blood cancer ward of the hospital and was administered a large dose of chemo via an IV. While receiving the chemo, I ate ice chips and rubbed ice on my eyebrows. Eating the chips can reduce the damage to the GI tract caused by the chemo. I had heard that ice on the eyebrows might keep the hair from falling out.
The following day, my harvested stem cells were reintroduced into my body. This is treated like a second birthday. The hospital ward staff gave me a piece of cake and a birthday balloon. The next few days were somewhat uneventful. I did some teleworking and spent my time getting used to the routine. I wasn’t able to leave the ward, and my room was environmentally controlled, with two sets of doors. If a door stayed open too long, an alarm would go off. Each day I used a worksheet to keep track of liquids I took in and expelled. I was also expected to walk a number of laps around the ward and do lung exercises with a handheld incentive spirometer. I also gargled several times a day to prevent infection and mouth sores.
It was day six when the effects of the chemo started to kick in. My white blood cell and platelet counts dropped dramatically. That was followed by persistent diarrhea and a growing sick feeling. My body ached, I felt queasy, and I was tired. Despite this, I maintained the daily tasks: tracking liquids, walking laps, and using the spirometer. But it was really difficult to eat. I was nauseous most of the time and really didn’t have an appetite. The nurses would check my vitals every four hours. So even if I were to fall asleep, I’d be woken up to have my vitals taken, which included getting out of bed to stand on the scale. I was only allowed one visitor at a time on the ward. Honestly, after day six I didn’t want anyone I loved to see me in such a horrible condition.
I was miserable, especially at night as I struggled to sleep. But it was during those times that I repeatedly told myself, “This is working.” I imagined my body flushing out the cancer and my fresh stem cells taking hold. Eventually my numbers started picking up. The white blood cell and platelet counts showed that the transplant had taken and my marrow was producing healthy cells. By day twelve I started to feel a little better, and took my first walk outside the ward. Two days later I was discharged.
Some of my hair came out near the end of my hospital stay, but the rest fell out after I got home. I expected to lose hair on my head, but I actually lost hair all over my body. My eyebrows, however, remained. Perhaps the ice helped. I also developed a rash on my face and neck. My energy level ebbed and flowed; most days I just wanted to sleep.
I’m forever grateful for my girlfriend, who took care of me during this time. Besides taking me to my follow-up appointments, she made sure I continued to eat, despite my poor appetite. And, most importantly, she kept my spirits up. Her eternal optimism and love are exactly what I needed. I was anxious to get back to normal, but my eagerness caused me to overdo it at times. I slowly started working from home. I was even able to help my daughters move into their dorms at the end of August. That was certainly pushing it, but I was glad to be there to experience that milestone in their lives. Dropping your children off at college stirs up a lot of emotions. Given what I had just gone through, gratitude was my prevailing emotion.
Maintenance
Eventually I returned to work, and my hair returned as well. I’m now in the maintenance phase of my treatment, which includes a lower dose of lenalidomide. My treatment calls for 21 days on and 7 days off the medication. The first couple of days of a new cycle, I get itchy rashes that I have to treat with Benadryl. I was pretty active prior to my diagnosis, and I tried to continue exercising throughout the treatment. One legacy of my treatment is persistent muscle cramping: not just foot and leg cramps, but large muscle cramps in my chest, back, and abdomen, as well as periodic cramping in my hands and neck. I started taking magnesium supplements and tried to stay hydrated. That has helped a bit. But I still have to regulate my activity to avoid the cramps. All in all, I would say my side effects are mild. And I’m grateful to be able to tolerate the medication.
Memento Mori
I remember walking the halls at work after the initial diagnosis as if nothing was wrong. It made me wonder: How many people do we pass each day who are dealing with some life-altering situation we’re completely unaware of? You never know what people are going through, or fully understand their actions in context. I try to keep that in mind in my day-to-day interactions.
I don’t know how much time I have left in this world. No one does. But the cancer diagnosis brought my mortality to the forefront. In a sense, that is a gift. Before that night in the ER, I’d taken for granted that I had time: time to solidify relationships, time to take the trips I’d been putting off, time to prepare for the end. There are things I thought I’d accomplish someday. There are places I want to see. I don’t know if I’ll be around for “someday,” so I’m living my life now. I try not to put things off. I don’t have time to waste. When I wake up each morning, no matter how I feel, physically or emotionally, I take stock of what I’m grateful for. At the top of that list, and the thing that makes me smile as my feet hit the floor, is this: I have an incurable cancer, and I am alive.
