After 41 years in the engineering business, and 26 years with my current company, I decided it was time to finally retire. My last day is tomorrow, Friday April 3.
I would have stayed on another couple years, but I’ve been battling health issues for the last few years…I have a disease called AL amyloidosis. It’s a rare thing that affects only about eight in a million. The short description is it’s caused by something called an amyloid protein, it spontaneously develops in the bone marrow and then migrates around the body attacking various organs as well as the neurological system.
It took quite a while to figure out what was going on. I started having mysterious pain, weight loss, mental and physical fatigue, and a host of other symptoms. I was having a terrible time keeping food down, and it got to the point where about all I could handle was white rice and a little lean chicken. I went through a half dozen different doctors here in Minneapolis and none of them could figure out what the problem was, and eventually I was diagnosed (erroneously) with fibromyalgia. So, I underwent various treatments for that for around 18 months, with no improvement. Finally, I got an appointment at the Mayo Clinic in Rochester, and they pretty rapidly figured it out. It helps that Mayo happens to be one of the world’s leaders in treatment of amyloidosis. They also don’t mess around - I was initially only going to be there for a half day appointment, but they got me in right away and I ended up spending almost two weeks getting tested.
Unfortunately, there’s no cure. However, there are things that can be done to help manage the disease. The initial plan was to do a stem cell transplant, but literally the day before that procedure was to begin I came down with a bad staph infection, and it landed me in the hospital for nearly three months. They had to cut some chunks out of me (a bone in my foot, a piece of my sternum and some other things), and before it was over I’d lost about 90 pounds and I had to learn how to walk again.
After I got out of the hospital and had recovered sufficiently, the doctors went in a different direction and put me on a chemotherapy program with a drug that is normally used to treat multiple myeloma patients. Fortunately, it’s helped quite a bit, and my blood tests have returned nearly to normal. The pain is gone and my mental faculties have returned. I’ve gained back some weight, but on the minus side I'm still about 60 pounds under where I should be (you could play the xylophone on my ribs) and I’m still pretty weak, although I can now get around without a walker or a cane. I do have severe neuropathy in my feet which is probably going to be permanent, and it makes me pretty wobbly. My stomach can handle more foods without too much issue, but I still have to be careful about what I eat.
I’ve been on partial disability since getting out of the hospital, working more or less half time, and even at that level it’s been a struggle to keep up - it’s just been wearing me down. I'm old enough now that I'll be able to stay on my health insurance through work until I'm eligible for Medicare, so I decided it made sense to pull the plug.
I get the chemo treatments once a month; it’s kind of like ‘chemo light’, in that I don’t have too many side effects - I haven’t lost my hair, and about all that happens is I feel a little crummy for a couple days after each treatment. The treatment sessions are a sobering experience - I look around the room at the other people who are there getting treated for their cancer, and I realize I could have it a lot worse.
The Mayo Clinic has a pretty good webpage explaining the disease in more detail, if you’re interested:
https://www.mayoclinic.org/diseases-...s/syc-20353178
That was a long winded story about retiring, but I thought it would also be a good way to raise a little awareness about the disease. If there is a celebrity face to the disease, it would probably be Matt Millen: He's a former pro football player who went on to become the president and CEO of the Detroit Lions, and later was a color broadcaster. In his case, the amyloidosis affected his heart and he had to get a heart transplant. Fortunately for me, my heart is still plenty strong.
https://en.wikipedia.org/wiki/Matt_Millen
So, back to the original reason for posting...I'm looking forward to not having to hear the alarm clock go off every morning.
