Might help for us to understand that mild oral chemo like HU was a huge breakthrough for people with chronic cancers in the 1970s. Before then, there was plateletpheresis and that was about it.

HU offered disease management without the side effects of huge doses of infused chemo. It's also been around long enough that it comes in cheap generic form and side effects are well documented. Plus a good hemo knows how to find the lowest maintenance dose. No, HU isn't without trade-offs. Not sure any cancer treatment is.

A real draw back of having ET or other MPNs is that nobody's ever heard of them, your chances of getting one is higher than getting struck by lightning, and if you tell people what you have, they say, "Well, you don't look sick." It's hard to find people who get it and can offer helpful advice.

Ranting on: If you have a common acute cancer, people can't do enough for you. There are support groups, prayer chains, and victory laps at the 5K runs when you've won your battle.

Get a chronic cancer and people get empathy burn out. They want to know why you aren't getting better and start telling you to eat more organic beets or something. Like you brought it all on yourself and you're not trying hard enough.

All of that isolation and lack of understanding can start to wear you down after awhile. Clearly, this is not one of my "good days"! But for anyone else feeling this way, I get it! And tomorrow will be better. 🙂