Category Archives: Personal stuff

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!

Tariffs and the Moral High Ground

Personal stuff

Does the moral high ground even matter anymore? It feels like the past decade or so has been an exercise in trying to convince us it’s no longer a thing anymore. The end justifies the means. Everyone’s mad as hell and not going to take it anymore.

Let’s look at just one single thing today- Tariffs- and explore what’s happening.

The current administration is using tariff’s to punish other countries, making their products either too expensive to sell or getting them to sharpen their accounting pencils even more than they already have, finding ways to treat their employees (those in China specifically) even worse than they already do, and rolling back costly efforts to make their facilities safer and less-polluting.

Where is the moral high ground in that? Is there an alternative that would help put manufacturing elsewhere (a small amount of which might move to the US), while at the same time benefitting the people working in those factories? And the cities that are being choked by pollution and seeing increasing health issues due to callous handling of waste?

I believe the answer is yes. We can have both. Create laws for imported products that require similar (but scaled back a bit to reflect economic realities) measures for employee safety and environmental protection as found in the US. There could be a tariff on those industries ignoring such practices, and an international commission tasked with measuring compliance.

The price of Chinese goods would necessarily increase. Pollution on the world stage would decrease. Human beings who happened by luck of the draw to be in China would benefit from better health. The US would benefit from doing something to better humanity overall.

That’s my thinking. Get away from everything being about punishment and an us vs them mentality and look for a way that’s the win is for both the US and humanity.