Betsy’s Story
First, let me thank you for taking the time to read my story. My name is Betsy, I grew up in a suburb of Kansas City, on the Kansas side. I am almost 45 years old and for the last decade I have been studying Astrology, Tarot and Shamanism. I also have spent many years guiding and helping others through their spiritual journeys. I have been blessed with learning the true meaning of not suffering through my existence and I am doing my best to continue living in peace, every day. I am a mother to 3 amazing boys and live my everyday life with my partner, Henri and our 2 emotional support cats. It has been gift to help others find wholeness, Love and Joy in life. Now it’s time to focus on myself.
In 2020 at the peak of pandemic time, I was traveling for my spiritual business I had built and was staying with a friend in Maryland. I was waiting to move back to Kansas City but had a couple months before that would happen. One day, I was washing my hair and pulled out a huge clump; I became concerned as anyone would and then the hives began. My entire body started producing these itchy, painful welts that would bleed. I was having a hard time sleeping; it was so bad.
I arrived in Kansas City late 2020, and this is when I noticed a pounding headache, accompanying the hives, beginning in the back of my head like someone was constantly hitting me. I thought maybe the headache was related to a tooth that had recently broke, so I visited the dentist right away, except the headache began to get worse. Turning into a constant migraine with auras, and the left side of my body was becoming debilitated and my eyesight was now impaired, so I had to go to the ER. I barely remember that visit to the ER. I know I had a spinal tap and a CT scan on my head, but they couldn’t figure out why I had this headache, so they admitted me. That night, the on-call doctor discovered a blood clot in a part of my brain, which is why the left side of my body was weaker and my eyesight was affected. They put me on blood thinners and other meds and kept me in the hospital for a week. I learned how to walk with a cane 7 days later and they sent me home. I did regain most of the strength back in my left side and did not have a stroke, but the whole experience is something I would never want anyone to go through.
After the hospital stay, my doctor sent me to a Hematologist/ Oncologist at the Cancer Center. Further bone marrow biopsy and genetic testing showed that I was at Stage 1 Primary Myelofibrosis, a rare bone marrow cancer that destroys your bone marrow and replaces it with scar tissue. This will eventually be leading to bone marrow failure and/or evolve to AML (Acute Myeloid Leukemia). There is no known cure for Myelofibrosis, however people have lived longer lives after a stem cell transplant. Unfortunately, you must be “qualified” for the transplant as well as find a donor, which can take years. I’m not sure what the qualifications are exactly for a stem cell transplant (SCT), but from what I understand I must be sicker than I currently am, because a SCT is life threatening.
After I received the diagnosis and a 25-year life prognosis, I searched for any specialists that might be able to help me and I saw that in Denver, Colorado in the UC Health network there were MPN (Myeloprolifitive Neoplasm- family of Myelofibrosis) specialists. Knowing from the past that as much as I loved Denver, Southern Colorado called me more. My partner, Henri and I set out to find a new home in Colorado. I left my children in Kansas City to go search for ways to be better cared for with this disease. This would be the first 900 miles we traveled to receive help for this rare disease that makes me less functional every day.
After arriving in Colorado and experiencing several mishaps and unfortunate life events, as well as an oncologist, (my second opinion) that wants me to just wait and see what happens, I feel myself being called to clinical trials, so I did extensive research and came to see that Memorial Sloan Kettering, on Long Island had clinical trials that I match with. Maybe I can be a part of killing this cancer before it becomes too much for me or anyone else.
The first half of 2023 was terribly stressful, and I found myself thrown into a storm of migraines again and just generally not well. We experienced being displaced for a couple of months, adding to the stress on my body. Henri and I believe that no one should live through homelessness, but especially cancer patients, should be protected from food and homeless insecurities. Our bodies are under enough stress, basic human rights like shelter and food should never be something we worry about. Henri and I have been able to slowly rebuild but moving to New York for clinical trials will put an added financial strain on us.
My treatments and medical care are taken care of as I am on Medicaid, which I am grateful for. Some of these treatments are up to $20,000 for a month. For now, my treatment is daily. I take a chemo med by capsule, a targeted immunotherapy by tablet, a blood thinner, and meds for neurological pain, each day for my symptoms. This is to keep me from getting more blood clots and having a stroke. The immune therapy helps with the bone pain and night sweats, and keeps my spleen at a relatively normal size. The side effects of these meds are what you would think: nausea, fatigue, etc. I’ve also experienced a lot of nerve pain with this condition and am being treated for that as well. The financial burdens we currently have, are in keeping a roof over our head and paying our day-to-day bills.
We don’t want to give up on finding a cure for this, for myself and for others. So now the adventure is to move from Colorado to Long Island, New York. I know we can achieve this to get me well and I am grateful for any help we are able to receive. Thank you again, for taking the time to read my story!
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Blessings,
Betsy
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