Thursday, April 30, 2009

a request

one of my doctors told me that this exercise can be comforting for patients undergoing procedures without analgesics, so i figure what the hell. since my procedure doesn't require painkillers (though most patients do opt for them) we're going to try for no painkillers and light sedation/meditation to see how i do.

they told me that i should tell people to send me good thoughts tomorrow, especially around 7:45am EST, since that is when I will be going in for surgery. apparently the simple idea of people caring about you, or the fact that you are thinking of them caring about you, can provide a great deal of comfort and fortitude. Obviously I am a little dubious, but i'm also scared as fuck so i'll take what i can get.

so yeah, 7:45amish tomorrow. me and my kidney would appreciate it.

Friday, April 24, 2009


i was approved for disability. i'm really not sure how i feel about this. i am glad that the financial burden of this disease will be lessened dramatically, however i am sad that this is where things stand. of course i want to get better, and of course i have to accept the fact that this illness is permanent.

Friday, April 17, 2009

on comments

Ok, I have to confess something here. I have another journal where, when someone comments I get emailed so I know it has happened. That apparently is not the case here, and as such I've been remiss in replying to comments. So please don't take it personally.

Thursday, April 16, 2009

it has been a while

Obviously i don't want to inundate this blog with all the minutiae that goes on in my life because most of it is boring and not relevant. Somehow I doubt y'all care about my videogaming skills.

Two big things have happened since my last post (well I guess three, maybe four. Okay, I hadn't really thought that sentence out at all.)

1) So the doctors were able to retest the remaining bone marrow aspirate after all, and I am apparently c-kit negative. This means that if I wanted to (or if my mastocytosis gets worse) I could potentially try an aggressive treatment like Gleevec. I am not at the point where I want to consider that though. However, I'm also a little leery about my test results. While I am proud of not backing down about the fact that the c-kit mutation wasn't originally tested, the fact remains that the test was done on a less than optimal sample. If I get to a point where I decide to go for more aggressive treatment, I would request having another biopsy done to ensure the proper sample size was taken, just to make sure that there is no mistaking the fact I'm missing the mutation (since it's rare not to have the mutation, and while we'd all like to think we are unique snowflakes, I find it difficult to believe I am a minority in an already teeny cohort).

2) If all goes well, i may be giving a little presentation at the annual TMS conference. My specialist was happy with how well I handled the bone marrow biopsy (considering how frightened I was) and voiced her concern about how many masto patients don't have them done. So she suggested that I give a little presentation on coping mechanisms and what to expect and all of that good stuff. We'll see if it happens. This will also be the first conference that I've been able to get to, being as I don't like flying. Obviously when the date nears I'll have a better idea of what is happening and I'll post more information there.

3) Kidney stuff still hasn't happened. As per my last post, there was lots of drama with anesthesiology. Apparently for whatever reason, the folks in Urology Anesthesia at MGH have never dealt with a masto patient before. Seriously. So now I've got the chief doing my anesthesia now. He called me yesterday and spent over an hour on the phone with me discussing various options for sedation and pain control. Overall it was a very positive experience (the only negative being that I am now being admitted for an overnight stay since they are anxious about the masto acting up, as it can apparently do so later on). I can't stress enough the importance of being an educated patient when it comes to dealing with a condition like this, or any orphan illness. Doctors, while our best asset, are not all versed in rare conditions so the onus lies on us to be able to educate them, or at the very least be able to provide them with resources. It's not easy, and of course it is an annoying additional responsibility, but it is well worth it. We are going to end up in situations where we need to be our own advocates, otherwise we may be presented with treatments that, while healthy for 99% of the population, can be quite dangerous for us (eg narcotic painkillers, nsaids, etc). It was very empowering speaking to this doctor who is obviously on the top of his field for such a long time, and have it be such a respectful and intelligent conversation. I'm still admittedly scared as hell about the surgery (which is on 5/1) but I feel way more confident than I did prior to the conversation.

4) I'm moving (in like, 2 days). Ok so this isn't 100% mastocytosis related, however it sort of is (for me). This is the apartment I got sick in. I remember sitting in the same spot I am now when I had one of my first big mast cell degranulation events, and not knowing if I was having a heart attack or some sort of massive, unprecedented panic attack. While it is a nice apartment, it is filled with a good deal of negative memories at this point. Not that I'm so traumatized I need to flee this space or anything so dramatic, but I felt like a change of scenery would be good. So yeah. New space, new dynamic, I'm looking forward to it.

Otherwise, that's about it. I had my disability hearing and am waiting to get the results back on that. I genuinely hope that that is a short term thing, as it's hard to feel defined by it. I know that there is more to me and this situation and this illness, however it's something I still feel sort of oddly ashamed about, which is obviously something I need to work on. The hearing itself went well. I had 8 doctors fill out paperwork explaining the systemic nature of this illness and how it would negatively impact my ability to work at the current time, and the judge and vocational expert both seemed sympathetic. So now it's a waiting game. an awkward and unpleasant one.