26 Years of Resilience: Overcoming Rare Blood Cancer and Severe GVHD

What a tough journey this has been for 26 years! It was 11 months after my husband passed away from cancer at the age of 46 that I started having chest pains and went to the ER. I was told that all was fine, but to go to the gastroenterologist and have all the tests done that he wanted done. So, I did, and my colon was good, buy my platelets were over 1 million and I was sent to an oncologist, who told me I had essential thrombocythemia.

After being told that there was a 3% chance that I would ever need a bone marrow transplant, and that things would be OK taking 2000 mg of a pill form of chemo a day. In 2009, I needed to have my neck plate and fused C4-C7, also needing to get another oncologist since my neck surgeon worked at a different hospital that was not treating my health issues. The new oncologist proceeded to tell me that I was not fine, and my disease progressed into myelofibrosis, which set back my surgery back six months.

After my neck surgery and I was well again, I flew to Texas to meet with another doctor about a clinical trial. That didn’t work out due to distance, since I live in California. I didn’t give up and drove myself to Arizona and met with the chief of the leukemia department, who was willing to put me into a clinical trial. He worked with my local oncologist to fax him every week my blood counts, test results of what he ordered, and after a year of doing this and driving back to Arzona, my bone marrow biopsy showed that I was actually worse, and then told that I needed to meet with the transplant team.

Returning back to California and returning to my oncologist at City of Hope, I proceeded with the transplant since my brother was a 100% match, so he became my donor, flying from Michigan to California to save my life on June 27, 2012. He flew back to Michigan after a week, and there I was alone again. My parents, husband, and most the family had passed away. The hospital told me that I couldn’t do this alone since no one has done this alone before. I said, “Watch me, I can do this!”

After many complications, especially graft versus host, I was able to go home three months later. Living alone, having wonderful friends to come and help me once I got home, I survived a rare blood cancer when I was told I had a year to live. I beat the odds again!

This journey of 13 years has been a roller coaster ride of ups and downs. I became disabled with so many complications, a career I worked so hard to achieve, my dreams were shattered, but my hope never gave up, and I continued helping people when I could. I volunteered running bereavement groups, ran a dance organization and served on other boards amidst all my challenges.

No one knew how I really felt, as I looked fine, but my body is falling apart on the inside. All the steroids, breaking my bones down, both of my eyes broke a hole in my macula, resulting in cataract surgeries. After months I regained my sight. My graft versus host is chronic, and my stomach has flare ups off and on. I have met with a breast cancer team, had my gallbladder removed this year and started a new clinical trial that requires me to go every two weeks for infusions with a new drug, FDA approved last year, for my graft versus host.

So many more things have happened, but the point of my story is not to give up! I have powered through so much, volunteering and giving back to others, helping others, joining organizations to help make a difference and not to feel sorry for myself. Telling my story has helped to inspire others to keep fighting! I hope this is helping someone right now that is reading this!

I am happy to say that my grandson is senior in high school and will graduate in June. This has been my goal and reason to fight, something we all need to have is a goal! I made him a promise that I would be there, sitting in the stands, being the loudest grandma cheering for him when he walks through graduation. He is the light of my life and I will continue to persevere and put one foot in front of the other to achieve this. I haven’t given up, nor will I. Staying busy, having a goal and perseverance keeps the brain intact. You can achieve anything you put your mind to!

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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