Before I go any further, I want to give much love to my incredible mother, Patsy Roark. She's been an absolute godsend not just as parents are concerned, but as a caretaker. She's made endless sacrifices personally, financially, and emotionally taking care of me both as a son and as a patient. I wouldn't be where I am today as a cancer survivor without her, and I will never be able to fully articulate how much I love her and how much she means to me.
...So on to the story. So this all started when I was six years old, I woke up one night with immense pain in my left femur, I think my mom assumed I had a stress fracture. We got an X-ray that night and that's when we got the news. I wouldn't know for a while exactly what was happening to me. I started doing chemo sessions for nine months, only getting to leave the hospital about three occasions that entire span of time. There was a three day period I was in the fetal position and did not respond to nurses or my own mother.
Eventually though, I pulled through and they cut out the remaining two inches of infected bone. They bridged the gap in my bone with a nickel alloy rod, which I was allergic to, so my leg developed a strange growth that looked like a second knee cap. The second rod was the same material, I guess they didn't believe I was really allergic.
My fifth operation was my first real success. It was a surgeon in Tampa named Dr. Doug Letson. He put a massive Titanium rod in to bridge the gap between my bone and for the first time in my life since my diagnosis, I was able to walk under my own power, without crutches. I'll never forget that wonderful feeling. But it didn't last terribly long, I was quick to take advantage of my newfound mobility so I took to mountain biking... and took a nasty fall, tearing a muscle in my left femur, of all places. I was on crutches for about six weeks. Needless to say my Mom wasn't happy.
I'm not sure if you all know this, but if you stop putting weight on your bones, they get weak and brittle... and mine were especially so to begin with. So when I started walking, the massive titanium rod broke free from my hip. It caused a strange lump near my rear end where the rod protruded from the bone. I saw five surgeons, each of which told me they wanted to perform a "reverseplasty amputation", which entails removing the thigh entirely, bringing the tibia (shin bone) up and attaching it to the hip, rotating the bone 180 degree (foot facing backwards) and you use the ankle joint as a knee, wearing a prosthetic below. It sounded awful to me, but I was desperate for any solution. Luckily for me, my mother was vehemently against doing so. We held off for five years like this. Five long years of crutches.
Eventually, my mom found my current surgeon on the internet Dr. Dror Paley. This guy is a rockstar. The Paley Institute and Dr. Paley himself have been critical in my road to recovery. Additional information about this incredible organization can be found @ http://www.paleyinstitute.org/ My first surgery with Paley was his longest operation ever: over nine hours.
My most recent surgery was November of 2014 and my recovery then was almost eight months. Really, one of the most painful parts of it is what I think most would consider fairly trivial: stretching.
Here's to hoping my next recovery doesn't take that long. Between funds lost from not working, in addition to medical expenses, 15 surgeries later frankly this is just becoming exhausting. Hopefully this is the last major surgery, but after a lifetime of them, sometimes I'm just not very optimistic. Thank you for taking the time to read this page, and I appreciate everyone's time and help.
Wish me luck!
Feel free to contact me @[email redacted]
- Gayle Spurr
- Felicia Sjöstrand
- Annette Berry
- Clara Wimberly
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