Sunday, June 3rd, was National Cancer Survivor's Day. I am a survivor of 17 years. I usually celebrate on my birthday, which is in two days, so I figured I would expand on the celebration and make it a week-long event. I'm not really doing a whole lot of celebrating, but I have a heightened state of awareness about overcoming enormous odds and it gives me new motivation and appreciation for things in life. Why this doesn't stick with me throughout the year, I'm unsure. That is something I should work to improve upon.
For those of you who don't know, here's a little back story. Okay, maybe it will be a lot back story. When I was 9 years old, I was diagnosed with childhood migraines after being sent home often from school for having headaches. At gymnastics class a few months later I felt like there was something in my right eye. No one could see anything and flushing it out did not help. Weeks later my eye started getting lazy and was turning grey, as if there was a haze over it. A couple weeks after that I contracted impetigo on my right nostril. Finally, a few weeks later I had a CAT scan and doctors found a tumor in my head. I was sent off to Children's Hospital of Wisconsin to undergo emergency surgery the next day to remove half the tumor that was pressing up against my optic nerve. I was told I had six months to live and underwent radiation therapy followed by intense chemotherapy (no breaks in between treatments). I lived in the hospital for those six months. My right eye was sewn shut for protection. The impetigo got worse and actually ate away part of my nostril. My heart stopped beating several times and waking up in the emergency room hooked up to a catheter is the worst feeling ever. Thanks to pain meds, I do not remember a whole lot from those six months. I do remember being quite the sassy kid, often yelling at nurses who wore too much perfume or woke me up. I think without this fight in me (the sisu in me), I wouldn't have lasted beyond those six months. But I survived and was going home cancer-free at the end of six months. It took a while to fully recover. I was mostly bedridden the whole time and had to get used to walking again. I was also fed through an IV and it took several months of carrying around a backpack of IV food before I was finally weaned back on to eating regularly. I had to adjust to the after-effects of all the treatment. My hair never fully grew back, it's very thin and sparse. I have daily headaches that I've learned to ignore. I am hard of hearing and have constant ringing in my ears. I also have excessive wax buildup that needs to be removed by seeing an ENT specialist every 3-6 months. I have no sensation on the right side of my face, including in my eye. Vision in that eye is also impaired but not correctable with glasses. My eyelashes frequently grow into my eye and since I have no feeling, I often have to have them plucked by an ophthalmologist. The right side of my nose runs constantly. I lost most of the teeth on the right side of my head due to decay from the radiation and frequent vomiting. Radiation also turned my jaw muscles into scar tissue so I have limited jaw mobility. It makes the teeth I currently have at a higher risk for decay. It also makes eating difficult. Everything has to be broken down into small pieces. I had jaw surgery to attempt to improve my mobility, it helped a few millimeters but it also left my lower jaw further set back and now I have a massive gap in between my front top and bottom teeth. I cannot bite into food like apples. I haven't grown since I was 9 and never reached puberty naturally. I have thyroid, estrogen, and growth hormone deficiencies. I take thyroid and estrogen medication and the estrogen has developed/matured my body a little. I tried growth hormone but couldn't deal with having to give myself a shot every day for the rest of my life and just accepted that I would be 4'9" forever. I have raynaud's phenomenon, which leaves my hands and sometimes my feet ice cold (the smallest breeze can set it off), where the tips change colors. I knew since I was 16 that I had many gallstones and recently had my gallbladder removed. I'm not sure if this is something related to my cancer experience. I also believe I have IBS, but am again unsure if this is related to my cancer experience. Anyhow, I'm still alive and that's my story.
I never liked the original name of the blog and wanted something short and sweet. I tried a random word generator and wasn't really getting anywhere. My great aunt had recently mentioned that it was the sisu in me that pulled me through my cancer ordeal. The word has been sticking with me the past few days. I've heard it used before by my aunts and other Finnish relatives, but it wasn't until recently that the meaning of the word really struck a chord. I have the basic definition of sisu just below the title of my blog. It is basically the essence of strength, will and determination to pull through when facing adversity. Sisu by itself wasn't enough. 'Sisu Life' came to mind first, but it doesn't sound right. I began to think of other words synonymous to life and came up with 'Sisu Vitality,' which sounds good to me!
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