Myeloma Tales: My Daughter's Syngeneic Stem Cell Transplant
BY ALAN KIRKWOOD I'm Alan Kirkwood and I live in Taylorsville, Utah, a suburb of Salt Lake City. My daughter, Michelle, is a myeloma survivor. Before her diagnosis, she was in pain for several years. At one point, she reported that it felt as though her rib had “popped out of its socket.” She went to a lot of different doctors who gave her pain medications, some chiropractors used different methods to help with the pain, but it kept coming back. We knew that something was wrong, but since she had been to so many doctors we thought surely they must know what they were doing. Finally, after some encouragement, she went to an orthopedic physician who wanted to do an MRI, but the insurance wouldn't pay for it until she had gone to an additional six weeks of physical therapy and/or chiropractic care. Eventually after returning to the orthopedic specialist the insurance company agreed and Michelle was scheduled for the MRI on the following Friday. After the MRI, her pain was so severe that her husband took her to the E.R. at St. Marks Hospital, where she explained that she didn't want pain medication, she wanted to find out what was going on. The E.R. doctor ran some tests which resulted in his suspicion, then he followed up with either an MRI or CAT scan... sorry, I don't remember which, that night is a bit of a blur. After getting the results back he told us that she had some form of cancer, but wouldn't know until further tests came back. Her calcium level was so high that if they had waited much longer the calcium imbalance would have stopped her heart. They admitted her to ICU at that time, administered some medications that dropped her calcium to a normal range, and ran some tests to determine that it was multiple myeloma. Until her diagnosis, we knew nothing about the disease. Her initial treatment protocol was Revlimid-Dex-Velcade. She just finished up a syngeneic stem cell transplant. Her identical twin sister, Tracie, was her stem cell donor. Michelle had a terrific support structure and was surrounded by people who wanted to help. Her husband, Corey, has been there for her almost constantly, returning home for a shower and change of clothes or to take care of other necessities. Tracie, her twin sister and stem cell donor, has been there when Corey had to leave, and has taken care of the house and supervised other family functions. Mindie, her youngest sister, Kylee, her daughter, and Karen, her mother seemed to be the support caregivers. When I showed up it always seemed as though I was in the way; the room was usually packed and if not packed at least moderately occupied to capacity. I considered my job to be the guy who takes care of things. If her son needed something at school, that was my job. If Michelle needed some information, I looked it up. I tried to make sure the sisters and Karen got something to eat, and I did some basic maintenance on Michelle's car since that was the kind of thing that would slip by unnoticed. I would obviously do anything for her, but I seldom got the chance; somebody always beat me to it. As the father of a myeloma patient, I tried to maintain as much of a normal life as possible. The drive to the hospital was through the middle of Salt Lake City, which I normally avoid at all cost, but I tried to go as often as I could. The hardest part of this journey for this dad was the "not knowing." Our oldest child, Michelle's sister, died from a drunk driver crash. I am numb from the anxiety of not being emotionally prepared for that possibility. I have to hope, but I tend to not allow myself too much optimism. This whole process is reminiscent of the time we dared hope for Rebecca. Hope is something that proves to be elusive. The treatment team at LDS Hospital, where Michelle was treated, was more than just a bunch of employees doing a job. These are great people who care about what they do and the people in their charge. My past experience was that hospital employees tend to be all business, and just keep track of the numbers, whatever numbers that might be. But LDS Hospital was full of people who seemed to take it all personally when things weren't the best. They were reassuring, professional and truly cared about Michelle's comfort. When Michelle was first diagnosed, we got a second consult at another cancer hospital in Salt Lake City. Although Michelle had an identical twin sister who was able to donate her stem cells, they didn't want to perform a syngeneic transplant. This made no sense to us-- she was so lucky to have that as an option. I'm happy that Michelle chose to have the transplant at LDS Hospital. I don't think we would change a thing in the protocol that was selected. If I were to give advice to someone else embarking on this myeloma journey, I would recommend having an identical twin. We joke that Michelle has “spare parts” in the form of her identical twin sister, but I seriously don't know what advice to give others. A close family is not just helpful, it's almost essential. As soon as anyone identified a need, somebody in the family took care of it. Michelle's stem cell transplant was on January 16, 2015. She was sent home on February 4 and went for her check-up on the February 9. Everything looked really good; great numbers and she didn't need a whole blood transfusion through the whole process. The stem cells seem to have engrafted a little quicker than most, causing some abdominal inflammation, fever and general discomfort, but most of that has gone away now. After her check-up on the 9th, she ended up with a low grade infection for which she was given antibiotics. The infection turned worse and she was re-admitted to LDS Hospital on the 11th, and hopefully, now that the infection has been mostly cleared up, she'll be sent home. Her usual happy, smiley self is back even though she misses her hair. My wife and I had planned a trip to the New England states for last Autumn, to see the colors, but we obviously had to cancel. Once Michelle has healed, I think we should go on a trip of some kind. My wife and I are retired so we didn't have trouble dropping what we were doing to help Michelle. I don't know how anyone could be a caregiver and have a full time job. Fortunately, Corey, Michelle's husband, has a job that he can do remotely, wherever there is an internet connection and his employer is very family friendly. Michelle's twin who donated her stem cell's, Tracie, was also flexible. She has a husband who has a job that allows her to stay in Salt Lake City, although she still has responsibilities with her family in Arizona. Mindie was able to provide for Michelle during her stay, but her visit was cut short by pressing responsibilities. While her husband has a job that allows Mindie to be a stay-at-home mom, he does travel making it necessary for Mindie to take care of her children. On thing I learned from this journey is that life is only a temporary condition. I need to be more kind to and tolerant of the people with whom I am traveling.