As something I think about at least once a day, my medical issues are a big part of me. A warning: this probably isn't going to be a completely upbeat exciting post or a short one, but I figure, in order to understand me and get something out of my blog, maybe I ought to discuss some of the things that I deal with daily. My medical crap definitely sets the tone for the chaos of my life. I have had two main and defining medical issues. One is ongoing, one is, thankfully and hopefully, a memory in the past, although, admittedly, it comes to the forefront of my mind more often than I care to admit.
When I thought of writing a blog, I've contemplated many different paths it could take (as I discussed yesterday). One of path was being an outlet for me to discuss everything I have gone through. Maybe giving inspiration to others who have similar experiences. I've always thought that there had to be a reason I was still kicking. So with that...let's get into the exciting medical history of ME! Hahahaha (yes, feel free to cringe!)
I am a cancer survivor. I'd say I wear the title with pride, but really, I just did what anyone would do if they found out they have a deadly disease. I chose life. I didn't even really make a choice...it just was. Does that make sense? I was diagnosed with colon cancer not quite a month after I turned 21. I was a senior in college (Wittenberg University). I had just come back from studying abroad in Germany (I graduated with a degree in German...yeah, pretty useful, huh? Definitely a story for another time), I was carrying a very heavy load of courses trying to make up for the classes that didn't transfer from Germany and working almost full time so I could afford to live since I spent every penny I had in Germany! To say I was busy would be an understatement. But really, I thank God I was so busy and stressed or else I probably wouldn't have found my cancer so early. For the sake of not getting into too many details, I had been feeling crappy in the bathroom way for about 2 years. I would have sworn I was lactose intolerant or something. For about a year and a half I had little bits of bloods to accompany all my bathroom visits, but I figured that made sense with as much as I was going. A few weeks into the school year, I had a LOT more bleeding...that wasn't normal. It happened twice and I was freaked out enough to go to the university's doctor. She was very thorough and didn't find any obvious reasons for the excessive bleeding. She had her own personal practise for three more days at the hospital across from campus. She suggested a sigmoidoscopy (yikes!) What an experience that was....hahahhaa. I was a nervous wreck. At this point, I had a creeping suspicion that this wasn't just some simple problem. I had a nagging feeling I was looking at something a lot more serious. She found a polyp. The lab results came back "highly atypical". She didn't tell us till later, the first results came back cancerous. She just couldn't imagine that was what was happening (I could have told her otherwise and would have been right). She suggested an immediate colonoscopy. Thanks to my aunt who works at the Cleveland Clinic, I had an appt within a week. Having my first colonoscopy was terrifying to say the least. Now that I am an old pro, I look back and think it really wasn't THAT bad, I was totally dramatic about it, but I remember being sore for a day or two after. Sure enough, that dang polyp was still there causing me all these problems. The new Dr. (Dr. Wu, who I became to just adore) removed the polyp and took a million biopsies every feet or something (probably why I was so sore after the first one). At this point, unaware that it really was cancer (well, I knew it was, but I hadn't had it confirmed officially), Dr. Wu explained that if it is cancer, technically, it was gone. A week later, we took a trip to Strongsville (this was where Dr. Wu worked) and heard the heart wrenching news that I had signet ring carcinoma. I remember it like it was yesterday. Well, I remember things getting a little blurry and me holding it together till my dad started crying. Pretty much immediately, I was taken to outpatient surgery and had an endoscopy. Needless to say, this hands down was one of the worst things I went thru with regards to my cancer. I mean, I had just had this news dropped on me and then had a tube shoved down my throat. I threw up the whole trip home. Dr. Wu decided a new Dr. would be the best for me and referred me to Dr. Fazio. Dr. Fazio was the head of the colorectal department at the Cleveland Clinic (I think he may still be). Sitting in his waiting room you could literally hear at least five different languages being spoken. People from around the world came to see him. Anyhow, I went thru quite a few tests and what have you. Apparently, the type of cancer I had almost never started in your colon, usually it starts in your stomach or pancreas and moves to your stomach. As well, it is a very aggressive cancer and typically 10 out of 10 people die from it (thank you American Cancer Society for this little gem of info told to my mom...) Dr. Fazio told me I had a better chance of getting struck by lightening thank getting this type of cancer at my age (very comforting...) I was scheduled for surgery November 9, 2000. A day that will always hold importance to me. Amazingly, all of my tests came back suggesting that the cancer started in my colon. I had a foot and a half of colon, 89 lymph nodes (to this day, I still haven't ever heard of anyone having this many lymph nodes removed) and my appendix removed. Pathology results revealed that I was officially CANCER FREE! Definitely up there as the most amazing words I've ever heard. I spent almost a week in the hospital and quite a while longer to recover. Overall, I was ridiculously lucky. No chemo, no radiation. Just a lifelong, close relationship with colonoscopies (small price to pay, no doubt). Though completely physically healed and mostly emotionally healed, this definitely was a defining moment in my life.
Wow, this post is getting long. Alright...I'll do my best to shorten the rest. All of my life, I have had a tendency towards having really loose ligaments. Meaning, my joints sublux or slip out of socket ofen and I am very flexible. Starting as young as 6th grade, I suffered from different sorts of pain. In sixth grade, I wore a knee brace for most of the year (super embarrassing by the way). At the time, I was told I was growing faster than my body could keep up with and I had tendinitis. In middle school, I had a few new braces added to my arsenal. Most memorable was the hand brace I wore on my right thumb because I had "tendinitis" in my thumb from playing the saxophone (seriously, I barely played and totally SUCKED when I did). A switch to the coronet helped some (well, it helped my thumb, not my music career...hahhahaah). Freshman year, I decided band was dumb (smart choice) and I wanted to play soccer (maybe not the best thing for a bad knee). I sat out most of the season with another knee brace on and even crutches. Finally, I was referred to a doctor in Cleveland who did surgery on my knee because my knee cap was loose. No amount of physical therapy could keep that sucker in place. Sophomore year, I decided to take a different approach to sports. I tried swimming. I LOVE swimming. It was a perfect no impact sport. Until, I got to college and my shoulder decided it just couldn't take anymore swimming. I did a bunch more physical therapy with only worse results. I spent the whole swimming season kicking and working out in the weight room. Definitely not what I had planned for my college swimming career. I saw a new Dr. at home and he decided on some surgery. The first was a new surgery they were trying out for this specific problem. In theory, they would heat up my ligaments and they would shrink because of the heat. Their theory was crap. This did not work and did just the opposite making me have more pain and become even more loose. Within six months, I had another shoulder surgery that was more invasive and they cut and pasted everything tighter. This surgery lasted for 5 years. Suddenly, I started having issues with my shoulder again. I had more surgery in attempt to do more of the same from five years ago. Tightening that bad boy up. This time, we took special care to stay immobile for 8 weeks rather than the normal 4-6 weeks and I worked with a therapist who had more experience with mobility issues. Sadly, I just couldn't seem to get my movement back (or pain under control). The surgery was in April 2005, at the end of December, I had a manipulation, where they sedate you and move your arm around trying to break free of anything that could be causing the immobility. I got my motion back, but never got rid of the pain. Seven years later, I am still suffering from chronic pain. In the mean time, I also found out what has been causing all of my problems with loose joints in the first place. A few years ago, I saw a genetic counsellor to see if my colon cancer was genetic (typically signet ring was pretty genetic...as of yet, they have not discovered a genetic cause for my cancer...thankfully!). I spoke with her about my joint issues and she referred me to another genetic counsellor. She diagnosed my mom and I both with Ehlers Danlos Hypermobility (type III is what they call it now I believe). Ehler Danlos, definitely a genetic disorder (and one that probably will plague L for the rest of his life too unfortunately) and my mom and I both fit the profile to the T. While amazing to finally have a a face to my nonstop problems, I don't necessarily have an answer to my problems. I've done countless things to relieve myself of my shoulder pain....physical therapy, tons and tons of narcotic and non-narcotic drugs, too many to count injections, nerve blocks, cortisone shots, etc, biofeed back, and finally a neurostimulator implanted in my spinal cord. Well, actually TWO spinal cord stimulators implanted. The first one short circuited after three years and recently (last August), I had a paddle lead inserted into my neck as well as some bone removed with the hopes of no more short circuiting and more pain relief (sadly, this hasn't been the case).
So in a book and half, you have my medical crap summarized. In six words....Cancer, loose joints and shoulder pain. It's been a long journey. It will probably continue to be. As it stands with my shoulder, I am currently waiting for a doctor's appointment with a new surgeon hoping to see if having my ligaments in my shoulder replaced with cadaver ligaments is something I might benefit from. Cheers to more surgery!
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