Life After MDS and Accomplishing Your Goals

Jane Biehl is a 12-year survivor of a very rare form of blood cancer, known as myelodysplastic syndrome (MDS). Catch up on all of Jane’s blogs here!

Several years ago, I wrote an emotionally difficult article titled "Will I Reach My Goal?" It was about a book I was writing. The book describes my life and what it was like being hard of hearing in the 60s and 70s without any support in the schools. It covers my experiences within the deaf community and how difficult it was when I lost more hearing from chemotherapy. I wanted to tell my unique story and considered this my legacy.

When diagnosed in 2010, I was given approximately 104 months to live. Miraculously, more treatments became available, and I lived longer than anticipated. I hoped my chances of finishing the book and publishing it were realized. However, it took four years to get this job done. I started it during the COVID-19 pandemic and took advantage of being confined at home to write the first draft. I immediately found an editor and communicated with her on a regular basis. She kept the book for a solid year, and when I pressed her, reminding her I was on a time limit, she returned it and said she couldn't do it right now. I think she quit editing. I found another excellent editor, and we worked nonstop for another year. She challenged me to do my best and produce a polished product. I wrote and rewrote until we were both satisfied. The end product was excellent compared with the first draft, thanks to her.

At one point, I was told I would have less than two years to live without a bone marrow transplant. I knew I would be too ill to finish the book. I chose instead to be on a brand-new treatment that had just approved by the FDA. It worked very well, and I was hopeful I could finish it. I am not married and do not have children, so this was a legacy for me to leave behind.

I do not mean I thought I would have a best seller and impact the world. However, I have taught deaf culture for several years. When teaching my students, I realized I had a front-row seat to life before the Americans with Disabilities Act, modern technology, the recognition of American sign language as an actual language and more. The students were so fascinated that I was inspired to write the story.

I had another difference from many authors. I knew no one else could finish my story if something happened to me. It was not like a work of fiction in which others could pick up and change the characters, scenery and plot.

There was something else that bothered me. I do not wish to be morbid, but I am being honest. I was so focused on the book that I wondered if, after I finished it, I would no longer have a purpose and pass away. Was this the only thing keeping me going?

In reality, I was wrong. I disregarded my family, who I love, my friends, my socializing, my volunteer work — which is essential to me — and my church, where I am surrounded by love. I think the whole scenario was just scary to me. I thought if I finished, what would be next?

I am happy to announce that the book was released in November of 2024! “Do You Have a Voice: Memoirs of My Journey with Deaf and Hard of Hearing People,” was finally available. I had a fantastic launch party with over 50 people attending, eating, visiting and getting autographs. I was shocked with how many other opportunities and resources have opened up for me. I joined a Writers Club where I have met fascinating people. I have written some more articles, including one for the Chicken Soup for the Soul series. I am presenting at a national Hearing Loss Association of America convention in June. I found a deaf resources group and am attending a convention in October.

The book's writing was not an end but the beginning of another exciting chapter of my life. I think with my cancer, I made a precious grab to hope with the book, and this kept me going. Many of us have those goals. It may be to see children grow up, meet grandchildren, travel to a long-awaited destination or finish a project like mine.

We should pursue our goals and dreams. We may finish the journey, and if not, it keeps us going and happy. We should not be afraid to finish because there is always another chapter in the book of life. If we pass on, there will be a great new adventure in the beyond. Meanwhile, we tried and left a part of us behind. So follow your dream no matter what.

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