***This is sort of a general story that I wrote out. It was sent with some of my records to various doctors***
The Tale of Ryan’s Tumor
Firstly, to whoever is reading this, I’d just like to say thank you. I really do appreciate it. I’m going to try to tell you the story in the quickest way possible as not to waste your time, but still give you any information that may be pertinent. If it seems a little impersonal at times, I apologize.
It all started at the innocent age of twenty-three, when I was but a wide-eyed young buck in the headlights of the world. That was easily the gayest description of myself I’ve ever given. I had recently started running (if you can call it that) and lifting weights (light, pink ones) to try to get back into some resemblance of being in-shape. Years of heavy partying tends to take you from in to out.
One day I went about my business as usual, nothing exciting happened, and I went to bed. Around 1:30 AM I woke up with a pretty intense pain in my back. It was bad enough that I couldn’t fall back to sleep (and thus my dreams of Swedish women were dashed…again) and had to get out of bed and walk around. This pain ended up lasting for three or four days, and then just went away.
I didn’t think much of it and continued on with life. I had things to do and people to see. Not really, but I pretended to, anyway. I started to notice that my legs were feeling more tired than normal, but I attributed that to the fact that I was running further distances and working out more. Over the course of the next week or two, they kept feeling more and more tired, for longer and longer spans of time, until eventually they constantly felt tired.
That’s about the time I knew something was up, but being a man and all, I decided to ignore it. I was at a friend’s house one night, and as I walking out to my car, my legs just randomly gave out. I dropped straight down the ground, and I had a little bit of trouble getting back up. Now I was drunk, but I wasn’t that drunk. From that point on, my legs felt weak on top of that “burning, tired” feeling.
It got the point where my legs started to give out more often. I finally decided that I needed to suck it up and go to the doctor. I went to my family doctor and he thought that maybe I had just tweaked my back somehow. To be safe he suggested that I get an MRI, but at the time I did not have insurance, so we didn’t go that route (*eerie, omen-signifying organ music should be played here*). He cracked my back and sent me on my way. It actually felt better for a day or two, but things just kept getting worse.
Since things kept getting worse, he decided to gracefully bow out and suggested that I now go see a chiropractor. I went to him for a span of two to three weeks, and after each visit I felt a little better, but everything always returned. When it returned, it also got worse.
Things got to the point where I couldn’t even stand up without a walker, and I could barely walk. The term “walk” is used loosely because it was more so me holding on to the walker and dragging my feet along the ground. I assumed I was dying and that this was it. What a way to go, lying in the front lawn, baking in the sun with a walker lying beside me.
A second suggestion of a MRI was made and this time I knew that I had no choice. I went and had it done at a hospital roughly twelve miles from where I live. You’ll find out why the distance is important in 3, 2, 1. By the time I got home, the hospital had already called and said I needed to come back and have more pictures taken. Back to the hospital I go, and by the time I got home from the second trip, my family doctor was on the phone saying that I had a cyst on my spine.
He set me up an appointment with a surgeon in Erie, PA. I believe it was only a week or so afterward. Upon meeting with the surgeon, he informed me that it was not a cyst on my spinal cord; it was a tumor inside my spinal cord. It was his opinion that it had to taken care of, or within two weeks I would completely paralyzed from the waist down, and that eventually it would kill me. It was also his opinion that the only way to take care of it was to surgically remove it. I told him to do it.
The time from the first symptom until surgery was six weeks.
May 26th, 2006. That was the date of my surgery. During preparation for it, they gave me a Cefazlolin (a form of Penicillin), which I had apparently magically became allergic to. I remember not being able to breathe, feeling very hot, and then basically blacking out. The last clear memory I have before my surgery is thinking “Oh, this can’t be a good sign.”
I woke up from surgery with absolutely no feeling or movement from the stomach down. I wasn’t all that happy of a camper. I may or may not have sworn at people.
I stayed in that hospital for three days and then was transported to another hospital to begin in-patient rehab. During this time there was a scramble to figure out what exactly it was that they took out of me. They apparently sent biopsies of my tumor all over the country because no one could figure out what it was. At one point they wanted to quarantine me until they knew, but in the end decided that was not needed. It ended up being Neurosarcoidosis, a rare form of the more common Sarcoidosis. Apparently Neurosarcoidosis is most commonly found in middle-aged black women, so it’s fitting that I had it. I’ve always been told that I had the aura of middle-aged black woman, and I’ve always felt that I had one lying deep down in my soul. Serve up the soul food, because Big Momma’s come out to play, and she’s here to stay, for more than a day, ay babay. See how I made that into a little rap?
While in this second hospital, some movement in my legs started to return. I’ll go more into all of that in a bit. They assigned me a Neurologist, who informed me that the standard treatment of Neurosarcoidosis (which I will from here on out refer to as “N.S.”) is a mixture of Prednisone and Methotrexate. For one week, at night, they gave me 1,000 MG of Prednisone via an I.V. After that week was up, the dosage was dropped to 60 MG a day in pill form. The Methotrexate was given once a week in pill form.
After being there a month, I was sent home and started out-patient rehab services. I went five times a week. Every doctor that I had (Neurosurgeon, Neurologist, Physiatrist, Family Doctor, Physical Therapists) were immediately impressed with my progress. They seem to still be, actually. Over the course of the next year I made progress. I was weaned off of my Prednisone (which I was ecstatic about because of all of the horrid side effects…and I had them all), and I just recently stopped taking my Methotrexate. Don’t tell my doctors though; they are not aware of that yet.
As I said before, after the surgery I had nothing from the stomach down. Couldn’t feel a thing, not even hunger or the feeling of being “full.” Bowl and bladder problems as well. I didn’t crap for almost four weeks. When I finally did, people were confused because we don’t live in CA but what appeared to be a giant mud slide was taking place. Houses were evacuated but none were damaged to awfully bad. I had to catheterize myself as well, which I was not a fan of. There’s nothing worse than waking up at 5 AM to stick a tube into your penis. You think coffee wakes you up?
Based on the day which I am writing this, the surgery took place seventeen months ago. In those seventeen months I have made what the doctors refer to as “amazing progress”. I was even referred to as a “medical marvel” once. If you ask me, I’ve made “some progress.”
I do not have to use catheters anymore. I was told I was probably going to have to the rest of my life, and I just wasn’t having that, so I just kept trying and trying until I eventually learned how to pee again. Is it perfect? Not quite yet, but it’s getting there. Same with the bowels.
The legs have gotten better as well. The feeling isn’t normal by any means, but it is returning. It’s strongest in my thighs, and then the further down my leg you go, the less feeling I have. If you touch me anywhere on my leg I can usually tell, but I don’t necessarily feel it. That “novocain” feeling.
It’s the same with strength. I can’t move my toes or ankles yet, but they rate my thighs at a three, I believe. Within the last month or so I’ve started to be able to do straight leg raises while lying flat on my back.
At rehab I can “walk” with giant, Robocop looking leg braces. At this point I can “walk” with them unlocked, on a treadmill, with a harness on me in case I fall. We progressed from just standing with the locked, to taking a step with them locked, to “walking” with three different types of walkers, to “walking” with forearm crutches, to “walking” on the treadmill. “Walking” with the leg braces is not functional, though, because they are so large and it’s so slow. Plus, I’m sure I look like an idiot and that’s just embarrassing. This entire thing is embarrassing.
Everyday I notice something new. A new feeling, a new movement, something a little stronger, etc. One thing the doctors can’t figure out is how I know something new is going to come back. The day before I make progress, I get sick. My stomach is upset, my brain hurts, I feel woozy and like I’m going to pass out, etc. The only explanation I can think of is that when a new nerve connection is made, my brain senses it and isn’t used to it and it throws it all out of whack. In a day or two I feel better, and then I notice the progress that was made. No pain, no gain, huh?
Don’t get me wrong, I realize I’ve made a lot of progress. It’s just so slow. I’ve dedicated my life to getting better. 24/7, it’s nothing but exercise. Exercising at home in the morning, then going to rehab, then exercising at home after rehab, then shocking my legs with a Neuromuscular Stimulator (which hurts, I might add) at night. I have no social life. I don’t go out. I work towards getting better, because I have to get better. Living the rest of my life in a wheelchair is not an option. It just isn’t. I’m too stubborn to accept that, I won’t accept that.
This did not end up being quick, nor short, and for that I apologize. I tried to wrap it up a little quicker there towards the end. That’s what I do, wrap things up quicker towards the end, just ask my ex-girlfriends. I hated to make that obligatory joke, but I couldn’t help myself. I’m sure I left a lot of details out, but there’s the general jist of things.
Thank you for reading this, and thanks in advance if you can offer any suggestions to make this process move along at a little faster pace. I realize that NASCAR speeds aren’t going to happen, but maybe “the running of the bulls” speed? Speaking of Bulls, even Scottie Pippen speed would be just fine.
