What Does Standing Up to Cancer Mean to You?

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!

I am amazed after fighting cancer for over 15 years how resilient the human spirit is. Throughout my experience, I have encountered many individuals who have bravely faced their illnesses, endured challenging treatments, inspired those around them and achieved longevity beyond what they ever thought was possible. When I was initially diagnosed and told the average life span for me was 104 months, I never dreamed I would be alive a decade and a half later. Every day is a gift to cherish.

There were times going through a variety of treatments ranging from oral chemo with horrible side effects, to painful shots in the stomach, to bone marrow biopsies to tough decisions about the next path to take — I faltered. I remember one time telling the nurses to let me die. Fortunately, they ignored me, knowing my fight would return. My energy level is severely depleted, my hearing loss is much worse, and I know with a blood cancer that I will never “ring the bell.” Now, however, I am feeling a sense of dread and overwhelming fear like I am going down an abyss because of events out of my control.

I am furious, helpless and vulnerable to the recent cuts in cancer research. I am only alive today because of the new miracle medicine research has discovered along the way. I go to the Cleveland Clinic four times a year to find out what is available. My local oncologist has shared that he has used my most recent treatment approved in 2020 with other oncology patients and has had remarkable success. My doctors have extended hope by telling me there are new drugs becoming available on the horizon if this one fails to work. I had so much hope.

This all changed with one swipe of the pen in Washington, D.C. I have just learned that the medical field is no longer able to guarantee this research and new treatments. People who have spent their lives investigating new treatments to help us are leaving research in droves. A medication that could have served as an alternative to what I am currently taking is no longer available on the market. I realize with an aching heart that this decision for major cuts can lead to my ultimate death. I am also sick about the cuts in pediatric drugs. I do not want to get into a political fray, but journalists and doctors and nurses and research people are asking why. Why does this happen when children who have their whole lives ahead of them need the treatment to live? 

This is a battle I have never had to fight. But I need to shift gears and fight in an unusual way. I need to contact my representatives, spread the word to people who do not know what is happening, write letters and fight to have this fateful decision overturned. We cancer survivors have stood up to cancer or we would not be here. Unfortunately, there is a difference between fighting a tumor or abnormality in the body and fighting a horrible political system. We now need to stand up to the people who control the funding. We are already warriors and in this together. We must unite and fight once more because our very lives depend on it. 

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

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