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.


Foxxy One said...

Hi Bridget, I'm glad they were able to do the test. I'm planning on attending the conference as well. I look forward to hearing you speak.


Emily said...

I think a change of scenery is always a good thing. Good luck with the disability, and there is no reason to feel ashamed! People who abuse the system should be ashamed, not people who genuinely need it. Sort of like with handicap parking spaces.

Anonymous said...

Bridget, I so understand about the moving issue. I still live in the same place where I found out I have mastocytosis, and I think moving would be so much better. Congrats on having the opportunity to speak at the conference this year!

Bridget said...

@Foxxy - thanks! we will see if it happens. Dr. Castells thought of it, I mentioned it to the Vice Chairwoman and she seemed quite positive.

@Emily - I totally think a change of scenery is good thing. Honestly I'd love to move out of Boston at some point, but until things are more stable/I'm more used to the masto, I'll be staying here. I do agree that people who abuse the system are shameful (and I've honestly met a couple), I think the issue for me at this time is just 100% admitting that I'm sick and this isn't going anywhere.

@Anonymous - Thanks! As I said to Foxxy, we will see if this works out. I mean, I'm terrified of medical procedures and I thought the BMB was easy, so I think it's an important point to get across since it is primarily an elective test.

Laurie said...

You are so, so right about the need to be our own advocates when it comes to educating doctors about our rare conditions--if we don't do it, who will?

Hope the move goes well!