My self-improvement kick #5: Physical therapy

Well. Went to the doc for a blood pressure check last week, and the upshot is that I start four weeks of physical therapy in Friday for a bum back, hip, and knee. Life just gets funner  and funner here in the land of Over Sixty!

The phases of ET

Phase Zero:
Blissful Ignorance

ET is an "indolent, progressive, chronic myeloproliferative neoplasm," which means it is a slow-going cancer with no cure that does get worse over time. The issue of disease progression--how ET may worsen over time--came up on the Facebook page the other day, and I realized that a lot of ET patients don't really think about this, so let's dig in.

Doctors don't seem to talk about disease progression much. Instead they talk about risk factors. There are probably a couple of reasons for this. First, doctors are busy, so why invite a bunch of questions or get ET patients all upset by doping out progression possibilities that might never occur? Risk factors help assess where the patient is right now. Second, the progression of ET and other MPNs is scantily researched, and doctors can't tell you when or if you will progress to another phase.

But I think part of dealing with an chronic and progressive illness is understanding where it might go and be better prepared. So here are the phases I think about when I think about living with ET. These phases aren't "official" or come from a doctor; they just capture my understanding of what progression means.

Oral mucositis? Try magic mouthwash!

It's not just mouthwash, it's
MAGIC. It may also help
with hydroxyurea-related
mouth ulcers.

Many ET patients on hydroxyurea (Hydrea) complain about mouth ulcers, or "oral mucositis." These ulcers are like super bad canker sores that can occur on your gums or the soft tissue of your mouth. You have to figure that any med that comes with instructions, as Hydrea does, telling you not to hold the pills in your bare hands or, if you do, to wash right afterward might be kind of hard on your skin. 

But there is help: Magic mouthwash! It's a real thing, and the Mayo Clinic has more info here.

You'll need a prescription for magic mouthwash, and the formula varies from pharmacy to pharmacy and doc to doc. Basically, magic mouthwash consists of ingredients designed to address potential bacterial and fungal infection, and inflammation. So it may prevent ulcers from forming and reduce the pain if they do.

More dope on cannabis

As reported here (a few times), there is currently no hard science about how cannabis affects patients with ET or other cancers, and I'm not endorsing it's use. Nevertheless, many cancer patients take cannabis to treat both stress and the side effects from chemotherapy.

The Washington Post this week reported something like a small double-blind study at the University of Illinois-Chicago. Researchers put 42 people through a stressful situation and then measured whether cannabis (specifically THC) reduced stress.

The 42 subjects received either 12.5 mg or 7.5 mg of THC. A third of the subjects received a placebo. Those who use marijuana they grow or purchase in herbal form (rather than the pure THC) get about 39 mg of THC in half a joint, so the test didn't exactly reflect typical circumstances. Moreover, as the article notes, marijuana plants (smoked or eaten) have other cannabinoid substances that were not tested in this study.

See, I told you I was sick ...

     

Here's a bone marrow sample from an ET patient. Notice
that the megakaryocytes are more numerous, bigger and 
have nuclei that may be spread out in an irregular pattern.

Lots of ET patients complain that well-meaning friends and family tell them that they don't LOOK sick. That's because they're not looking in the right place. For us, all the abnormality is in the bone marrow.

Your blood cells, are manufactured in your bone marrow, and large cells called megakaryocytes are the "parents" of your platelets. Those are the cells that help doctors confirm that you have ET.

I found some cool slides that illustrate an ET bone marrow sample looks like under a microscope. There's one at left!