Looking back, I think the first sign that something was wrong may have occurred September 2010, during my annual physical. A couple of markers in the routine blood test were up, but still within the normal range, so neither my doctor nor I made anything of it. During the following winter I struggled a little with my exercise. I had long been a moderate but regular jogger and biker. As hard as I pushed, I couldn't seem to make any improvement to my times, which had been very slow to begin with, as I was trying to recover from some injuries. I just chalked up my inability to go faster to my age--65 as of January 2011. I also continued to experience random, unexplainable injuries, which I also thought must be age related.
Then in February 2011, I shoveled a very shallow snowfall from the walks and driveway, just before going to bed. Early in the morning, before work, I noticed another inch of snow had fallen so I went out to shovel again. With the first effort I felt a pronounced pain in my left-front ribs, strong enough that I immediately stopped shoveling. I had felt fine the night before, and had done nothing strenuous or traumatic that would cause an injury. Moreover, I had shoveled snow all my life with no injury save one during the great snows of 1993, when I seriously overdid it. The pain persisted so I finally went to see my doctor on March 1. I mentioned the snow shoveling but said I didn't think it had caused my sore ribs. The doctor may or may not have been influenced by this, but at any rate, he advised me to take it easy and be careful. I followed his advice but not only did the pain persist, it began to move around; next it was in my left-front ribs then under my left shoulder blade. I emailed the doctor with this information and he replied with something to the effect that it was still probably just overexertion.
During the rest of March and through April I began to get very tired. Instead of exercising every night for thirty to sixty minutes, as I had done for many years, some nights I just had to skip the workout and take it easy, or even take a nap. By the end of April I had given up exercising altogether and was napping two hours some nights. The pains in my ribcage had persisted, along with pain in my pelvis near the groin. Overall I felt really lousy. At the insistence of my wife and daughters, I finally called the doctor and arranged for an appointment for May 4. This time he took blood tests and an x-ray of my pelvis. The blood tests would take a day to process but the x-ray was ready immediately, and based on the mottled look of the upper femur bone, the doctor said he was almost sure I had multiple myeloma, a type of blood cancer. The next morning he called me at work and said the blood tests had confirmed his diagnosis and directed me to check into the hospital right away, which I did. This was on Thursday, May 5--Cinco de Mayo--the thirty-fourth anniversary of my employment with the LDS Church. I left the office that morning, never to return.
I checked into the Intermountain Medical Center in Murray, Utah, where I quickly underwent a series of tests that validated the diagnosis of multiple myeloma and also determined the extent of damage caused by the cancer. The damage included a weakened immune system, severe anemia, a near failure of the kidneys, and lesions on all the bones in my body. This last one was what had been causing the pain in my ribs and pelvis. My medical team--including various doctors, nurses, and technicians, all of whom just seemed to randomly and miraculously appear--quickly administered drugs and other remedies to relieve my symptoms and get me out of immediate danger . My family and I felt pretty gloomy and uninformed until an oncologist, Dr. Nibley, appeared. He was upbeat and plainspoken, and quickly laid out what multiple myeloma is and what the course of treatment would be. After he left we felt much more positive. I was in the hospital four days, until Monday afternoon. I must say that I had a very positive experience with the IMC. The staff were unfailingly kind and helpful, and the spacious room allowed the presence of many of my loved ones during my stay.
I had received my first chemotherapy treatment at the hospital, a combination of Velcade (bortezomib) and Decadron (dexamethasone), a steroid. I also received a treatment for my bones, Zometa (zoledronic acid), an osteoporosis medication. I began going to Utah Cancer Specialists, where Dr. Nibley works, twice a week to continue the treatments. The first few weeks I experienced various strange side effects, such as bouts of severe chills and violent shaking, strange dreams, lightheadedness and even fainting, and the worst--one that would stay permanently--an extreme exacerbation of a pain in the skin of my legs. The most debilitating condition was weakness and fatigue, caused both by the cancer and the treatment, which made it difficult to accomplish much of anything. I worked from home on my corporate laptop, staying in touch and trying to keep projects going as well as I could. Gradually these side effects subsided, and during the early part of the summer I was able to lead a somewhat normal life.
I soon came to a conclusion, in council with my wife and family, that since the cancer would almost certainly shorten my life, I was going to spend my time with my loved ones, and not return to work. I had planned to retire in a year anyway, so I just moved it up. As I discussed retirement with my HR director, he suggested that I apply for long-term disability instead of retiring, which would offer several advantages. So now I am on LTD and will retire when it expires, after two years. I quickly wrapped up things at work and have never returned, except for the occasional lunch with good friends. I went on Social Security and enrolled in Medicare. I guess I am officially a senior citizen.
As the treatments continued, the markers that measure the extent of cancer within my body came down rather rapidly. That's the good part. The not-so-good part is that I have developed severe neuropathy in my feet and legs, and to a lesser extent in my hands and arms. My oncologist says mine is the worst case he has ever seen. In fact, he thought it so bad, and in such danger of getting worse, that he took me off the chemotherapy treatment. He said the cancer markers were down far enough that he wasn't far from discontinuing treatment anyway. He suggested I proceed with a stem cell/bone marrow transplant as soon as possible, and set me up to meet with the Blood and Marrow Transplant Team at LDS Hospital.
Meanwhile, my life in retirement continued. I had some good days when I felt little pain from the neuropathy and was able to get quite a bit done--work around the house, Church assignments, family fun, and so forth. Other days were not so good and I mostly ended up lying around, trying to distract myself with reading and TV. I was given medications by a wonderful pain doctor, Jane McPherson, which do help quite a bit. She even tried acupuncture on me for a while, but sadly it didn't seem to help. Medication aside, I find that I am gradually getting used to the pain, so that it doesn’t bother me as much as it used to. I admire those who work through substantial pain to lead very productive lives. So far, I am not one of them. I am, however, deeply filled with gratitude for all those family, friends, and medical practitioners who have all been so kind, concerned, and supportive. I am truly blessed.
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| Trying out some Acupuncture for the neuropathy pain. |
On September 22, Laraine and I met with a doctor and coordinator from the transplant team and then began the process of deciding if, when, and where to get a transplant. The transplant would consist of harvesting my stem cells, doing hard chemotherapy to destroy the bone marrow (and hence my immune system), and then restoring the stem cells, which would gradually regenerate the bone marrow. My wife and I studied the materials the team gave us and also checked out various websites and blogs my family had found for us. My daughter Emily, an oncology nurse at Primary Children's Hospital, had been especially zealous in researching the web and following my regular test results faithfully. The decision has been very difficult but after a month of dawdling we decided to go forward with the transplant. My most recent cancer markers have been heading back up at an alarming rate since the treatments were discontinued. The transplant is likely (not guaranteed) to reduce the cancer substantially, enough that I could have two to four years with little or no chemotherapy. Unfortunately, I have some chromosomal abnormalities that portend a less than stellar response. We'll just have to wait and see.
The transplant process began with an extensive set of baseline tests, including a bone marrow biopsy from my hip. A week later, on November 1st, another doctor on the team, Birgitta Mitchell, along with the coordinator, Greta Koontz, met with us to share the results of the tests. I was told I was in great health, except for the one small problem (cancer). Dr. Mitchell also told us that she and her colleagues were meeting the next day (in what they delightfully call the "tumor board") to discuss my case along with all the other cases. The issue was whether I should get a transplant right away or go back on chemo to try to get my "numbers" back down. Greta called the next afternoon and said we were a go for the transplant. So, every morning from the next Friday through Tuesday I received an injection of Neupogen, a drug that stimulates stem cell growth. That Monday they placed a central line in a vein near my heart, which I will wear throughout the transplant process. It's used for drawing blood, giving fluids, etc.
The next day I harvested stem cells at the hospital. My blood was circulated through a machine similar to the way dialysis is done. I collected enough cells that I didn't need to go back the next day, but I asked to go back anyway; I just wanted some extras. This caused a bit of an uproar, since no one had ever asked that before. Finally I was approved to go back, and I did collect a few million more cells. After that I was given a rest for a few days, and then on Friday, November 18, I entered LDS Hospital to begin the actual transplant.
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| Jeff.. hanging out during stem cell apheresis |