Category Archives: Personal stuff

Would Elon Musk joke about my son? Would he consider him a DEI employee?

Personal stuff

The FB post on the left was promoted by Elon Musk as an example of how awful, what terrible depths, “DEI” has brought to America. There was never a discussion as to whether this legally blind public employee was doing a great or terrible job. The assumption was that someone else who wasn’t legally blind would be doing a better job. My response to that post is on the right.

The world’s a better place, I believe, when people like Kevin, my son, are given a chance to excel. Doing so doesn’t drag the rest of the world down. It’s a net-positive. Kevin’s found a place he can excel. He’s employed, has health care, and isn’t on welfare or living in subsidized housing. And if you ever have the chance to be helped by him, buying a bike, setting up a Garmin computer to work with your phone and download it all automatically to Strava, or taking care of your flat tire on the spot because the mechanics are tied up, you will be better for the experience. If he had a seizure while you’re being helped, another staff member, probably one of our family, will come over and make sure he’s laying on the ground, support his head so he doesn’t bang it against the floor, and in 2-3 minutes he’ll be back on his feet almost as if nothing happened.

Is that something to make fun of? It’s hard to believe so many think it’s OK to say such things about productive people with a disability. As a Christian, it’s tough not to think of what Jesus said on the cross- “Father, forgive them, for they do not know what they are doing.”

A different type of weekend

Personal stuff, Uncategorized

So what’s this email all about?

Last weekend I attended a medical conference for specialists and patients afflicted with MPNs (Myleoproleiferative Neoplasms) in Phoeniz AZ. Really tough for me to give up a Sunday bike ride, not to mention be away from the shop on a Saturday, but this was my chance to hear from and talk with the experts for my rare bone marrow disease, a type of chronic cancer that causes my bone marrow to product way too many platelets.

Because it’s so rare, there aren’t that many specialists in the field, in particular none local in the Kaiser health care organization. I’ve gotten pretty good at reading med-speak and there is continuously-updated documentaion by the NCCN (National Comprehensive Cancer Network) that defines the standard of care for all types of cancers, including MPNs, in the United States. This puts me on the same page as the health care professionals and anything included for treatment in the guidelines will generally pass the hoops and hurdles required for insurance coverage.

It’s one thing reading about such things; it’s another thing entirely being in an environment where most of the top experts in the field are in one place. Probably 80 or so patients and a dozen experts, so plenty of opportunity for questions and follow-up.

My specific MPN is called Essential Thrombocythemia, driven by a gene mutation called CALR. The CALR gene wasn’t discovered until 2013, as seen in the email above. In fact, the woman who discovered it was at the conference! How cool is that? My inner geek (ok, not so inner) would have liked to have her sign a copy of my original labwork confirming I have that gene mutation.

It wasn’t cheap; I’m not used to $250/night hotel rooms. My standards are created by my travels to France, where I rarely pay more than $100/night, in July, when I’m at the Tour de France. I did stay as true to my non-car self as possible, taking the train from Redwood City to the airport, but no option other than Uber for getting to the event location, about 50 minutes (and $70) away from Phoenix airport. Arriving at the airport at 9pm, just not much choice.

It was different on the way back; I had a couple hours to kill so I took a pair of busses from the event back to the airport. Two hours instead of 50 minutes but $4 instead of $70.

I also got in a small amount of exercise Saturday evening when, at the end of the first day, I decided I’d try to hike across open dessert between the event and my hotel, about 2 miles away. Well, it didn’t turn out to be 2 miles because there were several fences out in the middle of nowhere, and a canal I had to navigate around, so think it was about 3.4 miles. Still, kind of nice being out in the middle of nothing but scrub brush and Cactus.

Next conference is in two years, and I’ll likely be there!