Back in 2016 I wrote one post about my battle with SIBO – Small Intestine Bacterial Overgrowth – and nothing since. Little did I know then that I’d be diagnosed with a bone tumor and life would change in dramatic ways.
At the time of my post I was seeing a nutritionist who had me on a strict diet regimen, and it appeared that it was working. However, my weight continued to drop. I reached 130 pounds. One of our clients, a doc at a local hospital, expressed extreme concern over my condition, and even asked if I’d had an HIV test. My clothes hung on me loosely, my face was sunken, my pallor made people uncomfortable. I looked desperately ill.
My attempts to lead a semi-normal life proved to be dangerous. I had no reserves, my constitution was nil. I’d fall out exerting the slightest of efforts – literally nearly collapsing. I wound up in the hospital after an attempt at a casual mountain bike ride, bonking out and wrecking a mere mile and a half into a trail I used to ride without giving it a second thought.
Another 4 months another x-ray, and another bout of scanxiety as I wait for the disc of images to arrive and be analyzed by my doc on the east coast. The ortho here who diagnosed me took a glance and thinks it looks no different from the last scan, so that’s somewhat of a relief. I never feel full relief until I hear from the experts though.
Well, honestly, I never feel full relief. There’s a reason for recurring x-rays far out into the future.
I live in a town of approximately 100,000 people in central Oregon. When I was diagnosed with a bone tumor at one of the two orthopedists in the city, I was straight away handed my file and x-rays and referred out to specialists in Portland, Seattle and even Texas, because there’s literally no one in my hometown who is qualified to treat my GCT. I ultimately chose to have it handled at Shands in Florida, for a variety of reasons; I have family working in that organization who helped fast track my case, I have family in Florida who could put us up and assist with recovery and, most important of all, Shands is a learning hospital that has a surgeon on staff who specializes in rare tumors including GCT.
I’m a luddite – I love Paint Shop Pro 9. Yeah, I use Illustrator and Photoshop and Inkscape and Gimp and all that goodness but, in a pinch, PSP9’s been my go-to quick and dirty image manipulator forever.
Then I got a fancy new laptop with a fancy new video card… and PSP9 wouldn’t work. It wouldn’t produce a window on launch, even though I could see it there in the task manager, running. And when I uninstalled and tried to reinstall, it hung for infinity on “registering modules.”
I don’t set resolutions – because calling anything that ensures they won’t be met – but I’m weaning from social media, especially Facebook. Because it’s tied to our pet sitting business and because too many bands and venues and events and such insist on using Facebook to disseminate information, I want/need to keep my actual account. For now, anyway. Since it’s an addiction, my brain keeps conjuring excuses to continue to interact with Facebook. But as I work my way backwards through my online life, purging my pics and my posts from the site, I’ve discovered unexpected encouragement to see the process through.
My surgery for GCT happened in December of 2017. It’s officially been over a year.
The knee/leg remains problematic. There’s still a significant dead spot due to nerve damage. It’s still prone to becoming sore and tender, and hasn’t the range of movement of its counterpart. It still doesn’t feel normal, like it used to. It doesn’t feel completely right. At this point, a year on, I wonder if this is the new normal. If you’ve read my previous posts, this isn’t news to you.
Over the holidays I spent a couple of weeks helping the in-laws prepare their house for sale, doing frankly quite a bit more manual labor in successive days than I have since the surgery. The area on the outside of my knee, the around the LCL, became painfully sore. This frightened me, because this is the pain I had started experiencing prior to my tumor diagnosis. Weird, since the tumor is on the inside of my leg, but perhaps the irritation came from unconscious favoring or compensating. At any rate, I opted to take a few days and chill on the labor. The pain subsided, but then I went for a mountain bike ride. By the time I’d returned from it the pain was sufficient to effect my walking. My limp was back. That was over a week ago, and while I’m not limping regularly now, it’s still tender. I’m not going down the stairs evenly as I was. Sitting still for any length of time causes it to stiffen up. To be fair, it’s quite cold here now, and that may be contributing to the stiffness.
I’ve never told the complete story of my involvement with the band Fishbone before. In the past few years however, I’ve experienced a bit of shade thrown at me, some subtle and some overt, by other people who’ve had involvement with them in the time during and after my own. Typically this has involved downplaying or minimizing my involvement, sometimes accompanied by humble bragging about involvement of their own. My reaction to this has always been to just keep quiet. Not only am I not big on what could be construed as tooting my own horn, there was a lot of conflict caught up in that time. But I’m tired of holding my peace, I’m thrilled that the band’s classic lineup is back together, and excited that they seem to be experiencing somewhat of a resurgence. I figure 20 years is long enough, and I’m allowed to have my say, as best I can recollect it.
I came across this interesting site talking about surgery and hardware in my researching the issues I’ve been having. It’s been 9 months since my surgery, and my knee isn’t right. It’s still slowly improving – I think – but I still have to favor it quite a bit. I can’t kneel on it with weight, it hasn’t the range of motion it used to, and I have to be very careful not to hit the area where the hardware is against anything, even lightly. On cold days or after serious exertion it hurts – not just where the tumor was, but down the tibia, where the hardware reaches.
I never before considered that bones – living bones – bend, and hardware like what’s installed after a surgery like GCT treatment means preventing part of the bone from bending, and placing stress on it. I think that the layman’s assumption about hardware is that it’s supposed to make the area where it’s placed stronger. And in some ways it does… but in others it makes it in a way weaker too.
This time around I had to provide x-rays of my lungs as well as the knee, as GCT can metastasize to the lungs. This proved no small feat, as the facility I go to here in town specializes in orthopedic and decidedly not lungs. The doc I’ve been seeing from the start – the Doc who diagnosed my tumor – assured me that while they couldn’t evaluate a lung x-ray, they’d be happy to take it. This is fine, since I send all my x-rays off to the team in Florida who performed my surgery.
Of course this didn’t go as planned. My normal doc wasn’t in the office the day of my appointment, and everyone else seemed befuddled by the idea that I wanted a lung scan. An appointment that should have been 10 minutes stretched to over an hour as I refused the knee x-ray without also having the lungs. Eventually a doc on duty responded to my increasing surliness by actually going through my case notes and discovering that I had indeed been assured they’d do it.
Then, as is par for the course, they send me home with a disc that only held the lung scans – no knee. Luckily, ever since I had disc lost in the mail I’ve made a point of cutting and ISO before sending them, and this time I noticed the lack of any knee images. Back up to the office I went to pick up another disc.