It started with pain on the right side of my back, I swore something was wrong with my kidney. A couple years later, scans of every kind, medications, removal of my gallbladder and scopes up and down, blood tests, fecal tests, urine tests and so much frustration. Nothing helped and I was having weird things going on in my body...constant diarrhea, fatigue, my feet felt like they were on fire, I had pains in my leg and was tired of the doctors passing me around. Finally, during a x-ray, IT was found, a mass in my spine at T11-12. They doctors had no idea what it was and wanted to do a needle biopsy, I told them no thank you and we promptly moved to Washington, in a nice little city that borders Olympia, it's beautiful here! Within a week of meeting my Neurologist I was headed in for surgery, no one really knowing what the mass was, what it was filled with, how tricky it was going to be because of where it was located. We were paying almost 700$ a month just for my COBRA insurance, I couldn't go through this without insurance and my 5000$ deductible was met within a few minutes of surgery =) So, in to surgery I went. The next thing I remember is the terrible pain I was in and I was pushing the morphine button as fast as I could. Then, I remember people standing at the end of my bed, messing with my feet. My right foot wasn't working right, crap! I stayed on the hospital side a couple days then I got shipped to a different part of the hospital where they could help me better, I cried the whole way, I was scared my leg and foot would never work right. One day in physical therapy, my Neurologist came to Randy and I and said he had the results. He said the mass was a soft tissue carcinoma, called Hemangiopericytoma of the spine, I remember hearing the words "very rare cancer." I think Randy and I sat there a minute with our mouths open. My PT asked if I wanted to go back to my room, uhhh, yes please.
I got to go home I think on the Fourth of July. I had a wheelchair, a walker, a bath seat and had to have help with everything. I was so drugged I don't remember alot, all I know is my dad, my brothers and Randy and the girls took care of everything. I know I slept and cried alot.
A couple weeks after surgery I started 6ish weeks of radiation, my cancer is chemo resistant. Radiation was not fun at all. I was nauseous,exhausted and in pain. Randy took me every day and never once complained. After my radiation I had another scan that showed enlarged and many lymph nodes in my chest and abdomen, I'm in the process of trying to have those looked at again. This cancer tends to travel to the lungs, liver and that wall behind your guts. I have an MRI every 3 months for 5 years, then every 6 months for another 5 years.
It's been 5 months now, I take morphine, oxy, a muscle relaxer and a 1200mg of gabba to help with nerve pain. Some days I can't move because I hurt so bad. If I walk too much my right foot drags and my legs wont do what I want them to do. I applied for disability and even with a note from my Neurosurgeon, all the medical reports and me bawling on the phone, it still sounds like I will be denied.
Between moving to where I could get better health care, meeting our deductable, paying for COBRA, Randy not being able to work because I could be alone and every day costs, cancer has destroyed our savings. Not only has it caused pain for my whole family, left a list of uncertanties on my health and destroyed our thoughts that I'd just have it removed and I'd be fine in a couple weeks, but it's also taken a financial toll on us, and continues every day.
Randy is working part time for Habitat for Humanity, which works out great because he's here if I need him, there will be a FT spot for him in January.
My brother told me to start a fundraiser for myself to help with every day costs that we just can't meet right now. The Holidays are coming, which are usually sad because our Mom isn't with us, but I feel even worse because of, well, me. Our girls said its okay if we dont get them gifts, they said we could go give kids that dont have anything the toys and clothes they dont use anymore. It makes me proud and sad.
If you would like to learn more about Hemangiopericytoma, let me know, I've been trying to learn more about it myself. So far I've found TWO people with it...two. Makes me wish I had a more common cancer!
Thank you to all my family, friends and strangers that have said countless prayers, listened while I cried, reminded me that not everything is about me, sent cards, money and gift cards. I appreciate ALL of you!
So I got a second at the Seattle Cancer Care Center, I have NO clue what it really means, all I know is I'm so tired! Hoping it's just the healing process. Here is a brief part of the new diagnosis; fibroblastic/myofibroblastic neoplasm with features that fall within the spectrum of what could be seen in several fibroblastic/myofibroblastic tumors including tendon sheath fibroma, myofibroma and possibly myopericytoma."
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