Although I was sick and had abnormal blood work by age 34, I was diagnosed with leukemia (CLL/Chronic Lymphocytic Leukemia) at age 36. According to the American Cancer Society, CLL usually occurs around age 72 and is rarely seen in people under the age of 40. Every year about 4,580 people die from CLL.
I had poor prognostic indicators and was told my expected survival might be 8 years, at best. My doctors and I wouldn’t accept that and I endured extreme measures to stay alive (a failed clinical trial, many chemo cocktails, a bone marrow transplant, more chemo treatments & even more infused stem cells). I am forever grateful to my initially unknown donor, who was affectionately referred to as MudMan (matched unrelated donor) by my family, friends and me. Now I know him and that he is a husband, a father to three beautiful children and my hero! I’m amazed by his selfless kindness to a stranger. Every morning, I give thanks to MudMan.
As you know, medical care is very expensive. I depleted my entire retirement and savings accounts for endless expenses during my fight to stay alive. I’m not able to go back to work, yet, due to my treatment related medical issues. These issues include T-cell leukemia, chronic graft vs. host disease (including painful joints and incredibly dry and irritated eyes), low immunity, chronic fatigue, etc.
I had many close calls of not being here anymore. I almost didn’t survive a debilitating case of the CMV virus. I was told only 40% of patients survive a stem cell transplant when the donor is unrelated. I fell seriously ill with a difficult to diagnose (and harder to treat) port infection. From 2008 through 2011, I not only spent planned weeks in the hospital, but then I was frequently readmitted for days or weeks, as I was often rushed to the ER for infections or fevers. I also spent many hours sitting in the chemo lounge, getting all day infusions and imagining myself someplace else. Someplace besides that room with that awful hospital smell, with IV tubes attached to the surgically implanted port in my chest and the fear that this was my new, permanent world.
The latest addition to my medical resume is interstitial cystitis/painful bladder syndrome. In 2013 I was having extreme bladder pain to the point I had to go to the ER. For months I was being treated for an assumed bacterial infection. Fortunately my SCT team ran a test that they were confident I couldn’t test positive for because I was too far out from my SCT. I have the BK virus in my bladder. It’s mostly found in kidney transplant recipients, it’s not well documented for SCTs. The BK virus damaged my bladder! After 7 years of specialists, many tests, etc, I have finally received a diagnosis regarding my bladder’s INTENSE 24/7 PAIN. July 2019 I was told I have MCAS – Mast Cell Activation Syndrome. It’s great to have a name, but I have already failed on 3 of the normal treatments of MCAS. There is a chemo agent that may help but it’s not indicated for MCAS, so my insurance won’t cover it. I still receive IVIG every three months as my immune system is still very week.
I didn’t fight this hard to stay alive with this relentless pain. Money, it always comes back to money. People tell you money doesn’t make you happy, but money helps me to live and for me happiness is being alive and not being in constant pain!
Grateful for your support,
JulieMeryl
