Sunday, April 15, 2012

just so i'm not all darkness and squeak

We went to see this artist play the other night. he's really incredibly talented, both as a musician and a painter. i really appreciate singers who manage to have both amazing lyrics and really stirring vocal inflection. stuff like this just makes me want to create.


Pamela said...

I enjoy reading your blog. I am sorry to hear about your struggles living with mastocytosis.

I have mastocytosis too.

Last October 5th, the eve of my 40th birthday, I had a bone marrow biopsy. Six days later, my oncologist and hematologist, confirmed the diagnosis of systemic mastocytosis.

Ironically, that same day, I ended up in the hospital because a large hematoma blood clot formed at the biospy incision cite.

I have the the C-Kit gene mutation too, but apparently, it is a rare type known as c-kit(w/t)wild type. I am still trying to understand the difference. This mutation is not as aggressive as the other one, but it can turn aggressive at any time, which I guess explains why it's "wild" kind of like a joker in a deck of cards. That's how I see it.

Well, I just wanted to say and let you know that you are not alone.

I see my oncologist and hematologist more than I see my parents. I have been taking Gleevec for four months, but we're still in the experimental stage treating the disease.

Bridget said...

You have a ckit mutation and you're on gleevec? that is actually pretty controversial since i guess some studies have shown that the ckit mutations make it very difficult if not impossible for gleevec to work effectively, though if you have a rare mutation maybe that is not the case?

regardless, best of luck. i hope the gleevec does a lot for you. i'm not wiling to try it yet (even though i'm ckit negative) since supposedly other drugs are in the pipeline

kristen said...

I was just given a preliminary diagnosis last week of systemic mastocytosis. I just completed the urine test and am waiting for the tryptase test. Here in Canada, we have only ONE lab that does the tryptase test. So lame!

I tend to react to many dyes and colourings in medications, so I'm worried about something like zantac. I've tried ketotifen even before my diagnosis, was on it for about a month or so, and had an adverse reaction to that. It basically made everything worse. I'm also unable to tolerate any other h1 antihistamine. It's very strange. Have you had any adverse reactions to medications?

Bridget said...


i'm generally pretty lucky, i don't react to much in terms of medication (except clairatin which makes me very ill). gastrocrom is super helpful