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:

Three essential questions to help you determine the best chemo for you

Doctors differ in their approaches to many things, time
travel, Daleks ... and ET.

I've learned from following online patient groups that doctors, and thus their patients, can become pretty wedded to their ideas about the "best" therapy for ET.

This is a long post, so bear with me. At the end of are three simple questions to your hematologist to see if you and your doc are on the same page about your treatment goals.

Until recently ... Doctors treating ET patients were mostly worried about clots--deep vein thrombosis, strokes, clots in the heart and lungs, rare conditions like Budd-Chiari (clots clogging the veins of the liver), and small clots in the hands and feet causing ischemia (loss of blood flow). These are all things doctors remain vigilant about. Aspirin and hydroxyurea (Hydrea) and anagrelide (Agrylin) have worked well to address these problems and have been the treatment of choice for decades.

Patient Power resources

Patient Power is an online site that offers info to patients with all types of cancer, and I'm adding it to our resources list.  The site puts viewers in touch with info and interviews with lots of specialists at research hospitals. You have to sign up to gain admission (no fee), and you can get updates about MPNs in your email. The site also tracks news from oncology conferences. Patient Power is funded by Incyte, the manufacturer of Jakafi. I always proceed with caution with organizations and sites that are funded by Big Pharma. Nevertheless, the information is credible and scientifically sound. So you may want to sign up, but understand who's driving the boat.

Patient Power also has a YouTube channel. You'll need to use your browser's search function to find those that pertain to MPN's. Use the search term "mpn." Here's a video from July in which Dr. Naveen Pammaraju, Anderson Cancer Center, answers the eternal ET patient question: Why are we so damn tired?

And here's Dr. Srdan Verstovsek, Anderson Cancer Center, explaining why we have night sweats and why I feel so damn good on prednisone, which I have taken for bronchial infections.

Here are some tidbits from this summer and early fall that I found interesting on Patient Power, in no particular order:

IPSET helps figure your thrombosis risk

I'm over 60, so how come I'm not on Hydrea (hydroxyurea)? Other patients my age with lower platelet counts are on chemo, while I'm still taking an aspirin.

All I understood from Dr. Blood at our last chit chat was that she considered me "stable" (that is my blood counts were staying in the mid 600s to mid 700s), and that age 60 wasn't a magic number that indicated a need for chemo, even though everyone over 60, regardless of health status, is walking around with a statistically higher risk of blood clots.

My self-improvement kick #6: Physical therapy, massage, and flu shots

I try to keep myself in shape and take care of myself, but it is increasingly difficult what with age and ET and Life in General getting in the way. Here's my latest saga:

I wrote about going to physical therapy earlier this year, and it helped a lot. None of the exercises were terribly strenuous. Nothing hurt a lot. Most involved stretches. But do allow me this brief rant: 

I ended up having to pay about $400 for this treatment. It was worth it, and I will pay it, but I could have gotten out of this a lot cheaper if I had just asked for a prescription for a pain killer. And therein lies a big problem with American health care. Physical therapy is a "high touch" proposition. You need an actual person to assess your problem, show you what to do, make sure you're doing it properly, prescribe your exercise regimen, and follow up to see if it's working. It doesn't work all at once. I did not dance out of the office Day One and throw my cane in a gutter. But six weeks later, I am sleeping at night. And I am saved having to take a bunch of medication. I am not walking like Chester on Gunsmoke. Why don't insurance companies cover this treatment better if they truly want people off the oxy and other pain meds? 

Anyhow,  I should be good as long as I do the exercises. Which leads me to ...