ET and mental health

Jimmie Holland probably isn't a name you've heard, but her work was well known to oncologists and patients with acute cancers.

Holland, who died recently, pioneered onco-psychology and mental health care for cancer patients. Her obit in the New York Times tells a bit about her work:

"It's bad enough to have cancer," she told the web site Medscape.com in 2015, but when all your family and friends are saying you have to be positive and you have to fight this thing, and the patient is exhausted and beaten up by the treatments--it seemed to me that adding that burden to be positive was just ridiculous." 

Our ET is chronic rather than acute. Our treatments and disease are less intensely exhausting, at least initially, but they last a lifetime.

Those of us with ET are often told our cancer won’t kill us and won’t shorten our lives. That isn't entirely true. And we often are not told about how to improve quality of life or deal with med side effects.

I talk to ET patients every day who think that their symptoms must be in their heads because support groups are thin on the ground, and they don't know anyone with ET.

How do you deal with the mental aspects of ET? Discuss here or on our Facebook page, link at right.

Be well! 

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ET in younger patients

This little video featuring Dr. Naveen Pemmaraju from Anderson Cancer Center is getting a lot of buzz over on our Facebook page, so I am cross-posting it here. Based on the hits, I'm guessing there is a real need to talk about treatment for children and young people in child-bearing years with ET.

Please take a listen (about three minutes), and discuss here or on our FB page (link at right).

Some things younger patients should discuss: Can youngsters take daily aspirin therapy? What are the long-term effects of chemo? How will ET affect fertility? How will ET affect pregnancy? What ET medications are safe to take during pregnancy?

Be well!

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How many MET minutes are in your week?

As many of you know from reading this blog and my FB page, my go-to exercise is my "bike to nowhere." I get 30 minutes of moderate exercise a day on it while watching the news. I also do about 15 or 20 minutes of physical therapy/yoga exercises a three times a week.

It doesn't seem like much. Is any of this helping my cardiovascular health and lowering overall stroke and heart attack risks? Yes, it is. It has also helped with overall fatigue and stamina.

Thoughts on the solstice and retirement

Me having a laugh with students as they lead
one of our final seminars.

It's the winter solstice here at 43 degrees north latitude, the shortest day of the year. It's a time that makes me think a little about how short life is, and how sweet it can be.

At the beginning of December, I retired from teaching (though I will still continue to tutor students). I invited my students to take photos in class that day and send me their favorites. These pics are a wonderful and funny souvenir of 35 years of teaching English to college students.

Over the years, the students stayed pretty much the same age. It's me who got older. There used to be a few years difference between me and my students. Now there are several decades. Some of their grandparents are younger than me.

Searching for a good night's sleep ... with benefits

Yes, I'm kind of sleep-obsessed. Like all

humans, especially ET patients, I need a 
a good night's sleep, an essential component
to health and quality of life.

As I've noted in other posts, ET complicates everything, including getting a good night's sleep. Now that it's winter, I keep my bedroom unheated and the night sweats have subsided. And I sleep better here in the Upper Midwest in lower light conditions of winter and fall. Call me weird (thousands do!), but I love seeing that sunset at 4:30 p.m. instead of 9:30 p.m. in summer.

Anyhow, I'm kind of nutty about the topic of sleep because, along with the ET, I have a bad back and occasional sciatic pain. This has been greatly relieved by physical therapy. But I took note of recent radio news on the topic of sleep in my quest to feel better rested and improve quality of life

"Eyes Wide Open" is a two-part report on sleep by Shankar Vedantam on his "Hidden Brain" program. (And if you aren't familiar with Vedantam and his fascinating reports on the vectors between hard science and social behavior, you are missing a really interesting show.)

Spleen-o-rama

Had my annual visit with Dr. Blood yesterday, and she ordered another spleen ultrasound. I had one when I was first diagnosed with ET two years ago, but since my platelets are moving from the 600s to the 700s, she wants to check it again. If it's OK, I'll continue on wait-and-watch with aspirin only. If it's enlarged, I will join Club Hydrea.

So this seems like a good time to talk about spleens!

UPDATE 3 (December 2, 2017): Spleen ultrasound was normal, so back to wait-and-watch mode for another year unless platelets spike. But here's a fun math problem! Below are the dimensions of my spleen in 2015 and the latest dimensions. Figure the number of cubic centimeters to determine any size change. Show your work!

2015 spleen: 9.7 centimeters by 5.2 centimeters by 10.2 centimeters
2017 spleen: 10 centimeters by 4.4 centimeters by 9.8 centimeters

UPDATE 2 (November 29, 2017): Had my spleen ultrasound this morning, so hope to know the verdict about whether it's time to start the hydroxyurea by Friday.

UPDATE 1: Here's Dr. Oh explaining the spleen issue for you.

Taking chemo? Use a condom

Yes, patients taking any kind of
chemotherapy should use a condom
to protect their partners from getting
a dose of chemo. 

Whether to use a condom if you are taking hydroxyurea (Hydrea) or other chemo came up on an MPN patient support group over the weekend. Most people were not aware that condom use is recommended for chemo patients. I sure wasn't. But two cancer nurses this morning confirmed it: If you are taking any kind of chemo for your ET, use a condom. This will prevent you from transmitting a dose of chemo to your partner.

Here's more info: