The amazing journey: When an older MF patient decides on stem cell transplant
By Patsy Bushee
My journey started when my blood tests showed I had leukemia. One day later, I was sitting in the office of an oncologist who did two bone marrow tests. Little blood came out of my hip on the first test, and there was extensive fibrosis. Thus, the situation created the need for a second test to be done in the other hip; the second test gave the same results. I had advanced Myelofibrosis, and probably had it for at least ten years. During the previous ten years, I was followed by an Internist, as well as a bone specialist, an instructor of other doctors, and neither realized the problem. I was treated for a different bone disease.
The result of having a rare disease can be that your doctor does not realize what he is handling! I personally knew the Oncologist, and I knew he could be trusted. He explained that some experts consider this bone cancer to be leukemia, and others do not. Great, I had a rare disease that, depending on the expert you were following, was or was not leukemia. I like being special, but this was a step too far.
Dr. McElveen would continue to follow me, but he no longer did Stem Cell transplants, and they now are not done anywhere in Columbia, SC, where I live. There are a couple of locations in the state where they are done, but he wanted me to be seen by a Dr. Kota in Augusta, GA. He explained that although there were drugs that would help the symptoms, there was no magical pill for cure. The only hope was a Stem Cell Transplant because of the advance stage of disease. He tried to explain the process to me, but I left the office not really understanding the only possible cure or the disease. This was my fuzzy brain fault, and not the fault of the doctor.
During the next few days, I lived on the Internet doing research, and I joined two support groups. Because I have family members involved in the practice of medicine, as well as research, I had the advantage of extra help. As a retired English teacher, my knowledge of medical information is severely limited. I only told my daughters and one of my sisters at this time. My husband was with me for all appointments. These family members were doing intense research because none of us understood this disease, or really knew about stem cell transplants.
The research we did made clear that the SCT was only a first step. There would be a year of recovery-possibly even longer. If I went with the transplant, there was no way to keep my disease private from other family members and friends. They needed to understand what I was facing, and I needed their prayers and support. Without the transplant, I had less than a year to live.
The weekend following my meeting with Dr. McElveen, I met with all my siblings at my Mother’s home. We had recently had her funeral, and we were going to start the process of going through her personal possessions. As we were finishing up for the day, I told the rest of my siblings about my new information. One sister started crying, and so I finally cried for the first time. The support from my siblings was there for me.
Next, I had my meeting with Dr. Vamsi K. Kota, who spent hours with me. I cried for the second and last time over the disease. He held my hand and was very compassionate about my reaction. He spent over two hours drawing items on the white paper and talking us through what was ahead.
My husband and I sat on one side of the examination table in chairs, and Dr. Kota was on the other side. The paper on the table filled as he explained things to us. I wanted to know more about his work at MD Anderson, and he had no problems answering some of my questions about him that were personal. Because of the advance stage of disease, I only had a 30% chance of still being alive one year later, with the transplant. The odds were against me, but if I wanted to attempt the transplant if he would do it. Of course, he did explain the need for a donor and that I had to pass physical tests. Another bone marrow biopsy was done, and like the try in Columbia, two attempts were made because the fibrosis was so severe. I figured 30% was better than 0% chance of life by the end of a year.
After our meeting and tests with Dr. Kota, I went into the “cancer gift shop” to see what items they had. Almost everything was for breast cancer patients. Just a few items were for leukemia patients. Checking the cancer shop here in Columbia, the same is true there. I decided there and then that this was not fair. I actually like the color lavender for all cancer patients. Think more would be accomplished if we worked together. I have had too many friends and family deal with breast cancer to not care deeply about that battle. I have a male friend in the hospital right now battling lung cancer. All cancer is horrible. I also found it easier to simply tell people I had a type of leukemia rather than deal with the puzzled looks my disease name produces. Many experts say that it is leukemia, so that is fine with me.
As we were driving home from that first visit in Augusta, I thought about the fact that I may only be alive a few more months. What did I want to do that is different from what I am now doing? Pleasant surprise-not really anything. I have a wonderful life. I have lived in Europe and other places, and other than travel in the USA to spend time with close family and friends, I was fortunate to be ready to accept whatever happened. I knew that no matter what happened, I would be okay because I have a strong faith. This would work for me, or I would be saying, “Hello Jesus” sooner than I expected. I have taken nothing for depression, and after the first two required meetings with the transplant psychologist, I have not been seen again to check my mental condition. Do not think I am any crazier than I have been my entire life, and I just do not have time for depression.
Dr. Kota wanted to test my youngest sister, age 58, to see if she could be my donor. He told me there was only a 25 % chance we would match. She would have to go through a day of testing in Augusta. First, blood tests had to be done here and mailed to Augusta. The dice rolled in my favor, and she was a match, and a willing donor. The weeks before the transplant, Janet went on long walks, closely watched her diet, increase the time she rode her horses, all in an effort to be as healthy as possible for me. Because she is older than most donors, her stem cells were harvested over a two day period, four hours each day, and she spent one night in the hospital. I loved her before, but what Janet Crossland did for me to save my life has increased that love to a new level. She has a family, job, full life, and she dropped everything for me. I have three sisters and one brother, and the support from all of them and their families has been wonderful.
The process for me has been so much easier because of family and friends. I have one daughter who dropped everything for weeks in her life to help us. She lives in another state, works in a hospital, and teaches respiratory therapy at a university. Although her father and I begged her not to do this, she and her husband insisted it was the right thing to do. Her bosses simply told her that of course they understood that she wanted to help, and they would take care of things for her.
Last November 5th, my husband and I celebrated 41 years of marriage. He has put his life on hold, and is my caretaker. I have a hard time getting him to leave me for a short while. He has only done so a few times. I am not allowed to drive yet, so he takes me to all appointments, and he prepares all my meals. He wants to do this for me! He asks how to prepare my favorites, and then he buys the ingredients, and he cooks beautiful dishes. Before, he was handy with a grill, but he has become an excellent cook in a regular kitchen.
By this time I was getting to know people on the MPN Forum, and they had given me good advice and additional understanding on what this was all about. Because of the support I had gotten, I decided to share my SCT with the group, and made plans for my daughter, who was coming from another state to help, and husband to post pictures to the group of the steps that would be involved during transplant. At the age of 63 (I turned 64 on September 16, 2012), I felt I could give hope to older members that they could live through the process. For the younger members, I thought seeing an older gal go through the process might help them. Only hesitated at first because of the real possibility I might die. However, we cannot run from truth in life, so we moved forward. Death is a part of life that we all will face. Since I would disappear from life for the extended time in the hospital and recovery, it was time to share with friends. No more meeting with lunch fellow retirees who had worked at the school with me, and other friends. No more social life for a while-period! There were some close family and friends that had to be told in person. We drove miles and miles from Florida to Rhode Island to talk to some of the special people in my life. It was my way of letting them know and saying goodbye-just in case.
I entered the hospital on April 9, and did not leave for 36 days.
Following 5 days of chemotherapy, I had two days of rest. The stem cell transplant was done on April 16, 2012. I spent 36 days in the hospital, and this was followed by three weeks in a hotel near the hospital. Since I live one and a half hours away, I was allowed to return home after this period, and we drove to Augusta for appointments. To cut down on the trips there, Dr. Kota works closely with Dr. McElveen, to get the follow up visits and labs completed. The two doctors continue to work closely with each other for my benefit. I have the ideal situation. I could have gone to MD Anderson, or to major hospitals in the northeast or the center for blood cancers in Seattle, Washington. However, the two doctors I have are wonderful, and there is nothing doctors could do at these other places that is not being done for me. In fact, I am getting more personal care than I would get at some locations. For anyone planning to have a SCT, check the record of the doctor, not the hospital. Your doctor is the one who matters! A good doctor is not going to work in an environment where he cannot function. By staying close to home, I saved money and trouble for my loved ones. I truly felt no need to put added stress of travel on them since I have a great doctor. Had I not found one, I would have extended my search to other states.
Today, as I write, is Day 282 post transplant. GVHD is always a major concern. My only problems have been extremely dry skin for about 3 months, and stiffness in muscles and joints. There is a chance this is due not to GVHD, but the chemotherapy. Yesterday, I saw an orthopedic in Augusta, so my transplant doctor can be part of the process if any surgery is needed. I am having problems with the rotator cuff of my right arm due to a muscle tear. After x-rays taken yesterday, the decision is that the tear is not as bad as first thought following the MRI. I was given a cortisone shot, and I will have physical therapy for a few weeks. I do not use a cane or wheelchair, but I do move a little slower than I did before transplant. That will change with additional healing. I fully expect to live a normal life shortly. My tests indicate I am cancer free. My doctors now tell me they see no reason I will not live ten to fifteen years, if not longer. Normally injections are started at the end of the first year. I am doing so well that mine was started when I saw Dr. Kota yesterday afternoon, following the orthopedic appointment. Following a SCT, you have to repeat all the injections you have had during life.
I have a new grandchild, born today! Will shortly be kissing and cuddling him. My tests show me to be cancer free. I feel better than I did for years before the transplant. I have been blessed. I will celebrate big on April 16, 2013, the day of my rebirth. My hope is to help others who are getting ready to take the step to a SCT. My doctors now have me talk to patients getting ready to have a transplant, so the process has started.
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