When I was a kid, before the internet, I loved getting novelty catalogs. I'd scour them for hours on end, planning for the next item I'd buy after saving enough money. Three things that always caught my eye were x-ray glasses, magic tricks and fake casts. I think with the x-ray glasses, I was smart enough to know it was highly unlikely they would work, so I never got a pair. Magic tricks I would occasionally get. A fake guillotine that would cut off a finger, a coin that folded in half and card tricks. I loved card tricks and was pretty good at them.
As an adult, I really don't like magic nor magicians. My dislike is rooted in my absolute hate for situations where someone is tricked or made to look foolish. The worst violators? Magic and movies. Don't get me started on movies where someone is trying to fool someone they know by trying to disguise their identity. Maddening. And really don't get me started on the movie Mrs. Doubtfire.
Wanting the sympathy that comes will an injury or illness
The third item, fake casts, is a weird one. I never broke a bone as a kid but thought I wanted to. I wanted the attention and wanted people to sign my cast. And I planned to show everyone that I was tough and would be the best-broken bone patient ever. I'd continue to live a normal life despite the setback. I'd ride my bike, play football and stoically walk the halls at school.
I once did get a fake cast for my arm. I thought it looked real, but everyone else knew it was fake and I got no sympathy. When I was 14, I had a nail go through my shoe into a bone in my foot. The foot got horribly infected, and don't ask me why, but instead of operating to clean it out, they put me in a series of casts to immobilize it. Yes, I was a stellar patient and rode my bike with the cast on. But it was not enjoyable at all. It was summertime and I wasn't able to go swimming all summer or go on a family camping trip. I could go on and on about the impacts of that summer with the infected foot, but I won't bore you all with that.
I have my own theories
In 2010, I aggravated the same foot that had the infection. The foot became painful and terribly swollen. Turns out I had a sesamoid bone that needed removing. My theory is that the sesamoid developed to encase in the infection I had when I was young. And by having surgery, the encased infection was released and led to myeloma a year later. My doctor shook his head when I told him my theory. But I know the truth. Post foot surgery, and by the way it was my first surgery ever, I wore a boot for several weeks. Not fun, but I was, as expected, a great patient. I'd go to happy hours, out to eat and proudly walk into work meetings with my boot. Impressive, right?
Being diagnosed with multiple myeloma
Little did I know that a year later, in 2011, I'd be diagnosed with multiple myeloma. That diagnosis has obviously changed my life. In addition to having continuous treatment since being diagnosed, I've had numerous procedures and surgeries that have poked and prodded literally every possible part of my body.
It used to be that about once year, I needed some kind of procedure. Then it became two a year. Then three a year. And through it all, I've been a resilient and strong patient.
A never-ending series of medical procedures
2023 is off to an auspicious start. It's felt like a stream of never ending procedures and surgeries. And if I'm being honest, enough is enough. I am so over being a patient and going to doctors and being either uncomfortable or in pain.
Recently we were doing imaging on my lower back, which has been a problem for over a year. The back imaging just happened to show a large stone in my right kidney. It's so large that it has a name: staghorn calculus. Normal procedure is to make incisions in the back and the kidney to remove it. It's too large to pass.
And while the stone was not causing me any pain, because of my myeloma-related kidney damage, it had to be removed. Last week, I underwent surgery to have a laser break up the stone. The surgery went fine, but for the last several days I've been in excruciating pain. Pain pills have helped, with the result that for the last several days I've been constipated. Finally yesterday, the pain subsided and things had opened up for me. We initially thought I'd need to undergo this surgery two weeks in a row. Fortunately we got it all the first time.
Weakness because of years of treatment
The challenge now is that I'm reminded of how much my lower back hurts. I'm not even able to walk to my car in the driveway pain free. We don't have a definitive date, but sometime in late July I'll be having back surgery. It truly feels like my only option at this point. Because I have weak bones as a result of 12 years of treatment and steroids, my 3-4 month recovery will include limited activity. I have to give it a chance to heal. Meanwhile, in between the kidney procedure and back surgery, I am having a skin cancer removed.
I've had a number of skin cancers removed over the past several years and it's not that big deal. But to have it happen between two surgeries feels surreal at this point.
I'm tired of medical concerns controlling my life
I'm seriously tired of medical stuff controlling my life. Don't I have a say in how I spend my days? It sure doesn't feel like it. And I've lost my desire to be a good patient. I mean, sure I still am one. I can't help it. But it's become easier to hermitize myself and suffer and recover in isolation. My wife is supportive and a wonderful caregiver, but it sucks that I have to explain to her why I don't talk much and need alone time. And on top of all that I carry the guilt that she has abandoned her own quality of life to be my caregiver.
What's ironic is that today I was scheduled for the second kidney surgery that was cancelled. And I feel a little lost. I wonder if my self identity is now partly tied to being a patient. I have no medical appointment at all today. I don't know what to do with myself and with my bad back, going for a hike or walk is out of the question.
The good news is that my myeloma is stable. I've been on the same treatment regimen for over six years and it continues to work great. So big picture, sure I'm good. Nonetheless, it's nice to be able to vent about how fed up I am with all this medical stuff and feeling like crap. I appreciate you all and hope I haven't over shared.
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