Vaccination roulette

Health department nurses distribute oral        
polio vaccine ca. 1960.

I have an appointment with a chain pharmacy here in Michigan to receive my first dose of one of the COVID-19 vaccines on March 9. I don't know whether I will get the Moderna or Pfizer vaccine. There isn't any way to choose; you take whatever vaccine the vaccination site has.

Having an appointment for a vaccine, of course, is not the same as actually getting the vaccine. Lags in vaccine production, shipping delays due to weather, difficulty ensuring that there are enough people trained to administer the shots--all of this has created problems in vaccine distribution here in the United States. 

In addition, state and local health departments had to create a network of vaccine distribution sites for people in each locale, and this took time.  Like a lot of people over age 65, I remember the 1960 distribution of the oral polio vaccine and couldn't help comparing that effort to the one going on now. In our town, people were directed to their local polling stations on a given day. There, the public health nurses gave us sugar cubes with the vaccine on it. I remember teasing my younger brother that he would have to get his via an eye-dropper because, at age 4, he was still a baby. 

Seven wishes about ET

In the six years since I started writing this blog, I've talked to hundreds of ET patients online here and through my Facebook page. 

Besides sharing our ET diagnosis, we all seem to share some common wishes as ET patients. So I thought I'd start out 20201 by offering the seven things I wish about ET that I think I share with most of you: 

Wish 1: I wish that health care providers understood that lack of information is the worst "side effect" of having ET. I hear something like this from a lot of my fellow patients: "I was just diagnosed with ET, and my doctor says he's not worried about it. But then I read online that I have cancer! I am really scared now!" Please, health care providers: Five minutes of clear, brisk info and a fact sheet would go a long way toward  helping us better understand our disease. 

Practical tips for ET patients and COVID19

ET patients hoping to stay health should continue to practice social distancing , get fresh air and exercise, have a mask and hand sanitizer when out,  maybe take a multivitamin, and not worry excessively. ET patients who do get sick should get tested for COVID19 and contact their hematologists.

That was the bottom line advice for MPN patients Drs. Ruben Mesa and Aaron Gerds at a Webinar session Tuesday. The session was sponsored by MPN Advocacy & Education International.

Coronavirus and cancer patients

Clean hands are safe hands! Wash hands frequently
to help prevent the spread of infectious diseases!

UPDATE, April 1: More specific info on C19 and MPNs from Drs. Ruben Mesa and Robyn Scherber here.

ET patients MAY be at higher risk for coronavirus than the general population. What does that mean exactly? It means that we may get the virus more easily or become more seriously ill if we do. That's because those on oral chemo are considered immune suppressed, and that makes it generally harder for us to fight off infections.

The Leukemia and Lymphoma Society has some brief guidelines and info specifically for blood cancer patients about corona virus.

But there's a lot we don't know about coronavirus, and the most important thing you can do for yourself and loved ones is to keep a clear head and not panic. The next most important thing is to stay informed. Here are some tips:

New book for MPN patients a mixed bag

Living Well with an Myeloproliferative Neoplasm by Dr. Krisstina Gowin is a new book--it may be the ONLY book--aimed at helping MPN patients understand and "live well" with our uncommon cancers. Is sells on Kindle for about $10. It's probably a very good resource for people who are just diagnosed. It can help you get your thoughts together and provides some good medical explanations that you probably won't get from your hematologist. But the book has some down sides. Here's my review:

My CBD disappointment

CBD oil: It's sold everywhere. But not all products are of
equal quality, and they may not help some people. CBD
can also create unwanted problems. Proceed with CAUTION.

The short version of my experiment with CBD oil is that it did not help me sleep, did not reduce restless leg syndrome, and did not reduce anxiety, common complaints among ET patients. CBD oil also seemed to worsen my acid reflux

Here's the longer version:

I was interested straight CBD, that is cannabidiol without THC. THC, as you may recall from your college days if you are of a Certain Age, is the substance that makes you giggly, red-eyed, and want to eat Cheetohs.

Signing up for Medicare

It's Elder Me getting ready to
sign up for Medicare!

I'll be 65 in September, and that means it's time to deal with Medicare, the government health insurance program for the elderly here in the U.S.  And much as I cringe to think of myself as "elderly," I have to remember the alternative.

Anyhow, here's my "first dive into Medicare" report. This is just a record of my experiences, and NOT MEDICARE ADVICE!!

The government knows your birthday, your income, whether you've been naughty or nice, and the folks at Medicare will automatically send you your Medicare insurance card before your 65th birthday. Everyone has to be enrolled in Part A, and you are automatically enrolled in Parts A and B (which together make basic Medicare) without having to do anything. If you're dropping out of Part B because you have retirement health care coverage from an employer, union, or professional association, there's info on the card that tells you what to do.