Leukemia Survivor

Long-term CML survivor’s goal was to beat the odds and help others

Jeanie Schiefelbusch is a life-long University of Kansas fan and attends home basketball games with her father, KU professor emeritus, Dr. Richard Schiefelbusch – who is 97 years young. In 1991, she was diagnosed at 33 with chronic myeloid leukemia (CML) shortly after she and her husband, Gary Fenton, married. They have two adopted children, 18 and 21. Jeanie has been a project coordinator for KU’s Juniper Gardens Children’s Project for 22 years. She is also a Master Gardener and runs half-marathons.

 

I was diagnosed with CML in the early 1990s. Although I was lucky they caught it early, my oncologist told me my only real chance of survival was to have a bone marrow transplant, which at the time had a fairly high percentage of failure. And if I didn’t have a sibling donor match he was pretty negative about my chances.

Thankfully my brother matched as my donor and here I am 24 years later — cancer free and in good health.

When I was so sick, however, in an MD Anderson Cancer Center isolation room for 23 days to have the bone marrow transplant, I had to find something positive. For me, I couldn’t wait for the day when I felt good enough to help someone else.

It was a fluke that I was even diagnosed, as I had never been sick. Gary and I were hoping to do foster care for teenagers and adults with disabilities, so we had complete physicals and my white blood cell count came back high.

We were shocked. The blood test was repeated and a bone marrow biopsy followed. The (Philadelphia chromosome) gene marker confirmed the diagnosis.

I wanted more information, but this was before the Internet, so I went to the medical center library where I found really negative, awful information — and went home and cried. I then had several follow-up opinions and was given chemotherapy to lower my blood counts. My treatment options were limited, but I chose to have a bone marrow transplant at MD Anderson because I wanted someplace that did a lot of transplants, and I wanted to have a chance to be cured.

When I was admitted for the transplant in August 1991, I remember walking through these metal doors to go to the isolation room, taking off my clothes and putting on a hospital gown. It was like shedding my old self, but not knowing what my new self would be like. I had the sickest, most empty feeling inside. That’s the only time I saw my husband cry.

They just about kill you with chemo and radiation for the first week in order to take your blood counts almost down to zero. Then you get your new marrow — like a blood transfusion. You wait for your counts to come up and hope it takes. I had terrible diarrhea and vomiting, was on high-dose steroids and lost my hair. I also had graft-versus-host disease and at one point, didn’t sleep for nine days and was becoming psychotic.

I eventually moved to a regular room and was released after another 10 days. We rented an apartment nearby because I had to stay in Houston for 100 days after the transplant for outpatient treatment. My mom stayed with me the entire time and my dad and in-laws visited. Gary would come down on weekends – and was super supportive and my constant advocate.

When I finally came home, I went back to work part-time, but I was depressed. I was on anti-rejection medications and steroids and vomited daily for almost a year. Even with my great support, I felt very lonely, and eventually was prescribed antidepressants, which helped me a lot.

Hitting a year (post transplant) was a big milestone. As they gradually weaned me off the medications, I knew I had beaten the odds. We had a big party for our family and friends because I couldn’t have done it by myself. I also contacted the Leukemia & Lymphoma Society to volunteer and joined their local board. For the Bloch Cancer Foundation Hotline, I still share my story with newly diagnosed people to give them hope that they can make it too.

That year wasn’t easy, but I always had the mindset that I was going to live to be 100, and have had no recurrence of cancer. For me, if I can help just one person through sharing my experience, it makes it worth it.

 

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