My multiple myeloma story is not so unusual, but it has transformed my life forever. From crossing paths with interesting people to embracing the outpouring of love and support from family and friends, life has definitely changed. But above all, it has given me a new purpose––to educate and guide other patients about multiple myeloma.
I had bouts of pneumonia and kidney problems in the spring and summer of 2007. The internist I saw for these symptoms reminded me each appointment that there was probably “something bigger” going on that we should investigate. He said I had abnormal amounts of protein in my urine, and my response was, “Well, of course, I had a protein drink this morning, and so I had lots of protein in my urine.”
Eventually, he got through to me by saying, “You’re really not listening to what I’m saying. There are abnormal proteins in your urine,” and then listed potential causes, including multiple myeloma. Ultimately, he referred me to an oncologist, but I still wasn’t ready to share the information with my wife.
She only found this out after I received a packet from the Kansas City Cancer Center.
My first appointment with the oncologist involved blood work, a bone marrow biopsy, and a skeletal CT scan. We scheduled a follow-up appointment to discuss the results. At that point, I wanted to take charge of my health; I didn’t want to wait for my next appointment to learn what I had.
Diagnosis: A Rapid Learning Process
I am a dentist by profession, and for the last 25 years of my career, I was involved in dental education at the School of Dentistry in Kansas City. So I asked the pathologist to send the pathology slides to the oral pathologist at the School of Dentistry where I worked; the oral pathologist was one of my teaching colleagues whom I respected.
After reviewing my slides, the oral pathologist let me know that I had multiple myeloma, which was a few days before my appointment with the oncologist.
At age 65, I didn’t know much about multiple myeloma, let alone the treatment, so I got a textbook, which was probably 30 or 50 years old; one paragraph described multiple myeloma as a blood cancer with a very short prognosis, which was the case when this textbook was written.
The oncologist called me soon after to discuss the results, and I said, “I know what you’re going to tell me.” My next meeting with the oncologist was a 3-hour appointment, which also included a financial advisor, a nurse practitioner, and a pharmacist. I learned that I was being referred for a stem-cell transplant soon. I knew nothing about the transplant, so I embarked on a very rapid learning process.
To determine whether I was eligible for the transplant, the doctor did a heart work up to see how fit I was. One of the main qualifiers for a transplant was being able to collect enough stem cells for 2 transplants.
The reality of my disease hadn’t set in until we went to the pharmacy to get the first round of medications, and the pharmacist said, “Your bill for today will be $7,000.” I started thinking, “Okay. I’m working. My monthly salary is this much. We can make it happen.” But even though I’m retired, my university insurance has been incredible, and the financial part of this diagnosis was not a challenge for us.
Opening Up to My Children
The day my wife and I learned of my diagnosis was the most difficult moment in our lives. I asked her not to tell the children. I didn’t want to make 4 different phone calls or send an e-mail. I wanted to have the family all together, so I told them the night before Thanksgiving when everyone was home. Their love and support were overpowering.
Between Thanksgiving and Christmas was a pivotal time for us; it was the period between receiving the diagnosis and planning for a stem-cell transplant. My daughter, who was in Kansas City at that time, folded 1,000 paper cranes and gave them to me on Christmas Eve; it was very special and significant, because of an ancient Japanese legend, which promises that anyone who folds 1,000 origami cranes will be granted a wish by the gods.
First Stem-Cell Transplant
That initial round of medications with dexamethasone and Revlimid (lenalidomide) was challenging because I’d never been sick in my life. Overall, I felt good, except for the side effects of dexamethasone. The next step was preparing for the transplant.
In February 2008, I had my first stem-cell collection, where stem cells were removed from my body. I was then admitted to the Kansas University Hospital Blood and Marrow Transplant unit, where I received my first round of chemotherapy on St. Patrick’s Day, followed by another round of chemotherapy the next day.
I had a day to rest before having my cells injected back into my body. My wife took a picture of me, then used Photoshop to add a green color, and e-mailed it to our friends with a note, “John’s having a big time. He’s having green chemo in the hospital.” You have to keep the spirit up.
I made a request to the nurse that she had never had before: I wanted to be the one to inject the stem cells back into my body. I had to get some control over the process. As a dentist, I had many experiences with injections, so the doctors agreed to let me inject myself. They hooked up the syringe to the port, and I spent an extra 4 hours injecting the stem cells back into my body, under the nurse’s supervision.
The next 17 days in the hospital were a blur. I had a few days of uncontrollable diarrhea, and I lost my appetite; there was no way I could put food in my mouth for a while.
Back to Life
Within 3 weeks of coming home, my wife was driving me to work for a couple of hours each day. My office was secluded. I put a sign on my door saying, “Virtual hugs and kisses are wonderful, but I can’t touch you,” and my friends would stop by each day and wave to me.
My 100-day appointment was near the end of July 2008, and I was told I was in nearly complete remission. We were in southwestern Colorado, and on July 3, which was my mother’s 96th birthday, I rode my bicycle 18 miles from our family cabin down to the town of Creed, Colorado, which is situated at a lower level than the cabin. It was very important for me to give my mother that birthday gift, and to prove that I could ride that distance.
A Second Transplant
I was taking Revlimid-based maintenance therapy for about 4 years. Then, in the spring of 2012, my multiple myeloma blood count started coming back up a little. In the summer, I switched from Revlimid to Velcade (bortezomib), which put me back in remission. I had planned to retire in September 2012, at age 70, but my doctor suggested that I have a second transplant in October.
I contacted 3 prominent doctors across the country, who all concurred that having the transplant while I was healthy was better than waiting for the multiple myeloma to get stronger. The dean at the university agreed to keep me on as a full-time faculty member until the end of the year to provide my insurance and financial support through the university.
I got ready for the transplant in October, and it involves a miracle story. That summer, knowing that I was going to have that second transplant, my second daughter sent out e-mails with outlines of hands to many people. She got everybody’s distribution list in the family, and over 300 people sent me a Caring Hand back, a paper hand that they cut out and wrote a message on, and she assembled those on a Japanese lantern, so it actually lights up from the inside.
When the nurse came into my room, I recognized her last name as the same last name of the family I had spent time with in Nepal in 2010 on a dental-medical outreach program. I said to my wife when she left the room, “Watch what happens when she comes back.”
When she came back, I asked her, “Are you from Tukuche, Nepal?” She responded, “Why would you ask me that question?” I said I recognized her last name, and she said, “Oh, yes. My husband’s family is from that village.”
It was her husband’s brother who had planned the trip for us to Nepal, so it was a truly incredible coincidence. We had a wonderful conversation about her family, and about my trip to Nepal; at the end of the appointment she said, “I’m not scheduled to work again tomorrow, but I will come in to give you your second round of chemo.”
When she came in the following day, she brought me a healing Buddha out of her personal altar and gave it to me, and said, “Carry this with you throughout your journey. It’s going to help you.”
This second time around, my hospital stay was shorter, and my recovery was faster. Maybe I knew what was coming; maybe I understood what was happening. Maybe my body knew what was happening, but there was clearly “something” there.
The Multiple Myeloma Journey Partners Program
At my 100-day appointment after the second transplant, I was in complete remission again, and that was the day I became involved with the speaker’s training of Sanofi’s Multiple Myeloma Journey Partners (or MMJP) program. The MMJP is a group of people with multiple myeloma who present their personal journeys to other patients with multiple myeloma.
The MMJP program is one of the most wonderful things that’s happened in my life. It has given me a new direction in life in retirement. It has given me the opportunity to continue interacting with people, and the chance to serve and help people.
As speakers in the program, we spend time explaining to other patients what multiple myeloma is. We also talk about autologous stem-cell transplant and many of those people who have had a transplant. We also share our knowledge, as well as learn by listening to other people about their experiences with multiple myeloma and with the transplant.
A large part of the presentation is dedicated to sharing our multiple myeloma journeys, and showing other patients that there’s hope; demonstrating that with new medications and new treatment, the “short lifetime” prognosis that some patients may initially receive may not be so short. (I’m still going very strong at 10 years.)
Knowledge Is Power Against Cancer
The program helps to get the word out that it’s important for patients to be knowledgeable about multiple myeloma; the more knowledge patients have, the better they will handle their disease.
The program is most effective for patients with newly diagnosed multiple myeloma, who are just learning about their diagnosis. One of my most rewarding conversations in the program was a gentleman who had just received his multiple myeloma diagnosis: he was still in the phase of not understanding what multiple myeloma was, and where he was headed. Sharing my knowledge and experience with him gave him some perspective.
The MMJP program offers a wonderful opportunity to share information and to interact with people and give them hope. I always come away feeling that I have gotten energy back from the new people I met and giving knowledge back to them.
If I can relay some words of wisdom to other patients, it would be the advice that I received when I was first diagnosed with multiple myeloma: “Don’t let the disease control you. You control the disease.”
It’s overwhelming at first, but gaining knowledge and speaking with other people can help you move forward.