Multiple Myeloma - April 21, 2017
Finding Positive Spots in My Multiple Myeloma Journey
Saying a few good words about cancer may seem a daunting task. However, lately it has occurred to me that my journey with cancer has some bright spots. It all began on March 17, 2014. The day you learn you might have cancer is a date you never forget. On that day, the word “cancer” was never mentioned. I had been hospitalized for nearly a week with a sudden kidney failure shortly after hernia surgery. My kidney function had dropped to 18%. The doctors told me that at 15%, I would need to start dialysis.
I had spent the week with a catheter, a most unpleasant experience. When my kidney function suddenly started to improve, I was ecstatic. I was elated when I was disconnected from all tubes, and was able to go to the bathroom on my own.
Due to be released the next morning, I was sitting in the hospital room with my life partner, Linda, and my 90-year-old mother. I was going home, and my kidneys were rapidly getting back to normal. I felt great. In the next couple of minutes, though, my life would drastically change.
An Inquisitive Doctor Means Early Diagnosis
A young female doctor from the hematology department came to talk to me. She was concerned that the cause of my kidney failure was unknown. She had traced my kidney problems to abnormal cell growth in my bone marrow. “Abnormal cell growth.” As soon as I heard those words, I knew they meant cancer.
I felt hollow, empty. I didn’t hear anything else, and became unaware of people in the room. I didn’t get that doctor’s name, but I am grateful for her persistent, inquisitive nature. She arranged for a staff oncologist to see me in the morning. It was a scary, lonely night in the hospital; all I wished for was the comfort of my dogs. Instead, I spent the night feeling sorry for myself, something I haven’t done much since.
By the next day, I had convinced myself the doctor was wrong. I had been feeling too good to have cancer, and cancer didn’t run in my family. I had a million reasons why I didn’t have cancer, and everyone, clinging to wishful thinking, backed me up.
When the results of the bone marrow biopsy came back, Linda and I were told it was multiple myeloma. I knew practically nothing about this type of cancer, but I would soon learn. It was early stage (thanks to the inquisitive doctor).
Most of the progress made in this disease occurred in the past 10 years, so when you look up “multiple myeloma” online, be sure to read the latest postings. Otherwise you could scare yourself with outdated information. Not long ago, a diagnosis of multiple myeloma came with a 2- to 4-year prognosis. And it could also mean amputation. Multiple myeloma starts in the bone marrow and can weaken bones and cause lesions. Weakened bones can lead to breaks, which in the past could lead to amputation if bones could no longer heal.
Thankfully, new medications can now strengthen bones, and much more effective chemo drugs and treatments, including stem-cell transplants and brand new oral drugs, improve survival. The prognosis for patients with multiple myeloma is now much better.
I was diagnosed nearly 3 years ago. Chemo, stem-cell transplant, nights on the bathroom floor, sick to my stomach, hair/no hair, PET scans, MRIs, x-rays, ultrasounds—it’s a lot.
A New Outlook on Life
So where do the positive words come in? Well, cancer changes people. I had changed. Multiple myeloma has no cure, but it is “treatable.” People die from multiple myeloma. I could die from this disease. This can certainly change one’s perspective on life, but it took something my cousin casually said for me to understand my newly formed mindset.
My cousin Nadine was 52 when she was diagnosed with pancreatic cancer. Not many people survive more than a few years with pancreatic cancer, and the treatment is relentless. One day Linda and I were at Nadine’s for dinner. Her husband Neil was telling us they were being honored at their synagogue, and both would be addressing the large congregation. Linda asked Nadine if she was scared to talk in front of several hundred people. Nadine replied that she had nothing to be scared of, she had already been told she had cancer—what more could scare her?
That statement stuck with me. All the little fears you live with each day—afraid to speak up, afraid to step out of your comfort zone—they weren’t important anymore. I had been told the worst: I had incurable cancer, what else could scare me? This brought an inner calm that wasn’t there before. That’s a good thing.
I’ve been in remission for more than 1 year now. I used to think remission meant you had “a break” from cancer, but that is not the case. It only means you have no symptoms of the disease. I still do “maintenance” chemo every other week, and I probably always will, unless the cancer becomes active again. In that case I’ll have more active chemotherapy, perhaps with newer drugs.
Of course a new treatment means different adverse reactions. I have a few bone lesions from the cancer, but they aren’t painful. I still go regularly to the Hospital of the University of Pennsylvania in Philadelphia to see my oncologist for the stem-cell transplants.
In the summer of 2015, I had stem cells extracted and frozen at Penn Medicine, a leading hospital and research center in stem-cell transplants.
People Make All the Difference
My doctor, Edward Stadamier, MD, is one of the country’s top physicians in the field. We agreed we could freeze my own stem cells and reintroduce them during a second remission. I’m in the first remission, so I’m not thinking about the procedure, which will involve a large dose of chemo, as did removing the cells.
The first oncologist I saw, Zoryana Stoyko, MD, became my oncologist. I appreciate her professionalism, concern, and compassion. Most important, I trust her. Dr. Stoyko is associated with the Nazha Cancer Center in Northfield, NJ, one of the brightest spots I’ve come across on this journey.
Cancer has blessed me with meeting some of the finest people. My chemo experience is like “Cheers”—everyone knows my name, and people are laughing—during chemo! There is a fine line between professionalism and friendliness, and the wonderful staff members at the Nazha Cancer Center have perfected that mix.
Chemotherapy can be very relaxing during treatment (but not so much later). Big comfortable recliners; a clean, well-lit room that is not too crowded. Would I miss chemo if I didn’t need it? Part of me definitely would.
In addition to handling my physical problems, Nazha’s social worker, Nancy May, helped me with my health insurance, unemployment, and Social Security. You see, 6 months after my diagnosis, the place I had worked for the past 29 years closed down. I was out of work for the first time in my life at age 62, and I had cancer.
I didn’t know how to get health insurance, since it had always been provided by my employer. Ms. May navigated me through all the paperwork and red tape. One on one, people care. This journey has constantly reminded me of how good people can be.
Back to the Drawing Board
I had no job and many doctors’ appointments, so I started to spend more time on a hobby that had always made me happy. From a very young age I enjoyed drawing and painting, strictly self-taught. Now I had plenty of time, and I didn’t want to spend it dwelling on cancer. While painting, I was completely absorbed, and I was finally spending my days doing something that brought me happiness.
For the first time, I showed my paintings to others, and people liked them. Two examples are included with this article. I won a local award, and one of my paintings graced the cover of this magazine, CONQUER, in December 2016.
In a way, cancer and unemployment let me find myself. So it hasn’t been all bad. The changes I’ve undergone, the people I’ve met, and the freedom to do what I love, have been thoroughly rewarding.
Miracles are happening in research labs at a faster and faster pace, and I believe there will be many bright spots ahead that I have yet to imagine.