Jane Biehl is a 12-year survivor of a really uncommon type of blood most cancers, often known as myelodysplastic syndrome (MDS). Make amends for all of Jane’s blogs right here!
I’m amazed after combating most cancers for over 15 years how resilient the human spirit is. All through my expertise, I’ve encountered many people who’ve bravely confronted their sicknesses, endured difficult remedies, impressed these round them and achieved longevity past what they ever thought was attainable. Once I was initially identified and informed the typical life span for me was 104 months, I by no means dreamed I might be alive a decade and a half later. On daily basis is a present to cherish.
There have been occasions going by way of quite a lot of remedies starting from oral chemo with horrible uncomfortable side effects, to painful photographs within the abdomen, to bone marrow biopsies to robust choices concerning the subsequent path to take — I faltered. I bear in mind one time telling the nurses to let me die. Thankfully, they ignored me, understanding my struggle would return. My vitality degree is severely depleted, my listening to loss is far worse, and I do know with a blood most cancers that I’ll by no means “ring the bell.” Now, nevertheless, I’m feeling a way of dread and overwhelming concern like I’m going down an abyss due to occasions out of my management.
I’m livid, helpless and weak to the current cuts in most cancers analysis. I’m solely alive right now due to the brand new miracle drugs analysis has found alongside the way in which. I am going to the Cleveland Clinic 4 occasions a 12 months to search out out what is out there. My native oncologist has shared that he has used my most up-to-date remedy authorized in 2020 with different oncology sufferers and has had exceptional success. My docs have prolonged hope by telling me there are new medicine changing into obtainable on the horizon if this one fails to work. I had a lot hope.
This all modified with one swipe of the pen in Washington, D.C. I’ve simply discovered that the medical area is not capable of assure this analysis and new remedies. Individuals who have spent their lives investigating new remedies to assist us are leaving analysis in droves. A drugs that would have served as a substitute for what I’m presently taking is not obtainable available on the market. I understand with an aching coronary heart that this resolution for main cuts can result in my final loss of life. I’m additionally sick concerning the cuts in pediatric medicine. I don’t need to get right into a political fray, however journalists and docs and nurses and analysis persons are asking why. Why does this occur when youngsters who’ve their entire lives forward of them want the remedy to dwell?
It is a battle I’ve by no means needed to struggle. However I have to shift gears and struggle in an uncommon manner. I have to contact my representatives, unfold the phrase to individuals who have no idea what is occurring, write letters and struggle to have this fateful resolution overturned. We most cancers survivors have stood as much as most cancers or we might not be right here. Sadly, there’s a distinction between combating a tumor or abnormality within the physique and combating a horrible political system. We now want to face as much as the individuals who management the funding. We’re already warriors and on this collectively. We should unite and struggle as soon as extra as a result of our very lives rely upon it.
This piece displays the writer’s private expertise and perspective. For medical recommendation, please seek the advice of your well being care supplier.
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