Walter Schaffer: Managing MDS

Walter Schaffer lives in the mountains of North Central Pennsylvania. He is a retired diesel mechanic and drove a semi-truck part time before retirement. He enjoys woodworking, reading, and gardening both vegetable and flowers. Here is Walter’s story:

In June 2015, I was admitted to the hospital for placement of a pacemaker. After surgery I was told by someone I had a new lease on life. When I returned to the cardiologist in October, he noted my blood tests showed I was anemic. I had more tests; all of my blood counts were low. I was referred to a hematologist/oncologist.   

After a bone marrow biopsy in January 2016, I was diagnosed with Myelodysplastic Syndrome (MDS); blasts-2 (RAEB-2) cells were 19%. Unfortunately, I am not a transplant candidate. My oncologist informed me that  because I am not eligible for a transplant, this bone marrow cancer is not considered curable for me. My new lease on life changed in an instant. My oncologist suggested I learn as much as possible about MDS as it would help me to understand my cancer.

The goal was to improve symptoms and quality of life and prolong survival. I was told I would get worse before I got better. My blood counts dropped during treatment. My oncologist recommended Azacitidine (Vidaza®). I received Vidaza® by injection every day for five days in a row, every 4 weeks. My side effects were mild: constipation, nausea, and reddening and rash at the injection site. The bad news: fatigue was my constant companion, and I became neutropenic. I had to be careful not to pick up an infection that could become life threatening. I realized it was important to remain engaged in social functions, but if I found myself in tight knit places with a lot of people, I had to take precautions to protect my health. I became almost homebound except for treatments and doctor appointments. The good news: I did not require blood transfusions, and I stayed relatively healthy.

Unfortunately, I had to stop work. As a part-time semi-truck driver, the physical requirements and long hours became exhausting. It became apparent that it was unsafe for me to continue driving. My reaction times were not as quick, and I wasn’t as alert behind the wheel. Although I missed work, I finally came to grips with it and settled into retirement.

In October 2016, another biopsy was performed. The results: no progression of MDS, and blast cells were at 4%. My oncologist decided to put a hold on treatment, and I am now in a “watch and wait” stage. I have monthly labs that are closely monitored. My lease on life is now in a holding pattern. Aside from suffering fatigue, I feel that I am blessed. My labs over the past 8 months, while still low, have remained stable. I practice all the safety precautions for patients with a weakened immune system. I have been able to resume attending church, social activities, and physical activity. I listen to my body and rest when I need to rest.

Due to my weakened immune system, I followed a neutropenic diet. My wife and I decided it was time to ask for a nutrition consultation. Two days later we received an e-mail from The Leukemia & Lymphoma Society offering a free nutrition consultation from PearlPoint Cancer Support. It was like a divine intervention. My wife called and an appointment was set up with a Nutrition Educator. My wife explained that not only was I neutropenic, but I also had diabetes. The Nutrition Educator gave us many helpful nutrition ideas about eating the right type of foods to stay satisfied, stronger, and to feel better. I am pleased to say that in only one week, I was starting to feel improvement.  I want to thank PearlPoint and LLS for their support. I am fortunate to have a wonderful support team. I am thankful for my wife, church, family and friends, those who pray for me, my oncology team, my PCP team, and the LLS Information Specialists. My faith has kept me going through these difficult months, and it will continue to do so through this journey. My motto is, “One day at a time, with God’s help.”  Every day new treatments and clinical trials become available for cancer patients. Never lose hope. Your new lease on life may be right around the corner.

 

 

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