oh hi there

Eep, sorry i fell off the face of the planet for a while there. I've been dealing with a kidney stone which is by far one of the more annoying things in life. aside from setting off all sorts of masto symptoms, that sucker hurts, a lot. I've also been dealing with apartment hunting, as my partner and i decided we wanted to live back in the city. we ended up with a loft in a really neat artist collective and i cannot wait to move in...but i digress.


Ok, so my last post was all "whoo bmb time around the corner" (actually it was more "ooooh noooooo") and that corner has come and gone (though the procedure happened a week later than originally intended, and as such I am still waiting for the results which I should get by tomorrow or Monday). I had my bmb performed at Dana Farber Cancer Institute in Boston. Oh such a somber place. I'm always fascinated by the direct relation between how serious the field the specialist works in seems proportionate to how nice people are in the office. At primary care they wouldn't notice if you were on fire, but when you are at one of the top cancer hospitals in the country, everyone is way nice.

the procedure itself was, honestly, a cakewalk. the worst part of it by far was my anxiety, which was at banner levels for me. anxiety is something that has been hard for me to cope with since my diagnosis, since I am afraid of things going badly in ways i am unfamiliar with. so far in every case my anxiety has just added to the situation and made it worse.

to avoid freaking out and trying to volley kick a doctor, i opted to take 1mg klonopin an hour before, and then 1mg ativan right before. i was not looped out of my mind by any stretch of the imagination, but i felt pretty warm and comfortable. it helped that my doctor was stellar and my husband was allowed to stay in the room with me.

the procedure itself was way less bells and whistles than i expected. since i went to Dana Farber wearing my yoga pants and a loose shirt they didn't have me undress, and just pulled my pants down and my shirt up. then i got a shot of a local anesthetic (not lidocaine, i forget what it was) and that burned really badly. the shot hurt since anesthetics seem to burn by nature, and because the needle was stuck really deep in there to numb everything from the surface of the bone up to the top layer of skin.

after that they went in and did the aspirate (which is the collection of liquid marrow) and then got the bone marrow sample. aside from the local which hurt really badly really briefly, nothing else was particularly painful. it felt weird, and sort of gross and alien to have my insides siphoned out, but overall it was not a super unpleasant experience. there is pressure and feelings that are completely unfamiliar, but i think that as long as your doctor knows what they are doing, you aren't freaking out, and you remember to breathe into the pain (sort of like lamaze or meditation), you'll be set. it is also pretty quick once you get in there and get prepped. the anticipation really is the worst part.

in the essence of documentation, i had my partner take pictures of the procedure. however needs freak them out, so they didn't get any good shots of me getting poked though. i decided (and the doctors agreed) that while i was completely fascinated by the procedure, it would not be in my best interest to actually watch since the gauge or length of the needles might upset me.

so here are some pictures of my bmb to show how absolutely much of a non issue the whole procedure was. i've had worse dentist experiences when it comes to pain.

pictures from the procedure

2/9/09

i get my bone marrow biopsy. if anyone has any stories to share (ideally positive) i'd love to hear them. i'm scared witless to say the least.

meds help

I can be reached at bridget.mcgraw@gmail.com

UGH!

Seriously, my masto has been out of control lately. I've got some sort
of viral thing going on apparently (one of my lymph nodes is swollen
plus I have some fluid in my ear) and I'm guessing/hoping that is what
is exacerbating it?

Anyway, I'm undermedicated for my masto. Unfortunately, Dr. Castells
has been out of the office for ages and therefore not around for me to
do medical trials in her office (I have one scheduled for later this
week thankfully) but I've been dealing with the tachycardia, metallic
taste and general uneasiness for a few days now. It's really terrible.
Is this normal to go through? It's really dreadful and I get nervous
that this is progressing even though my tryptase level hasn't
budged..but of course in the back of my head I get worried that it's
somehow turning into aggressive or leukemia something.

Anyway, we want to add Singulair to my meds this week and I was
wondering how everyone has fared on that. I just feel like so often I
see, "well I was on ____ for a while until it caused *insert medical
issue here*" and I think I end up feeling discouraged before I even
start something since all the anecdotal stuff I read seems negative.

As it stands right now I'm taking:

200ml Gastrocrom 4x a day
150mg Zantac 1 or 2x a day (i'm bad with remembering this one)
1mg Ketotifen 1x a day
.25mg Klonopin 1x a day
50mg Atarax either 1 or 2x a day as needed (I'm not sure what the
ongoing status of this one is going to be for me, if I am going to
take it ongoing or if I'm only going to be taking it right now since
everything is acting up)


What else is there really that helps with symptoms? What else should I
be asking about in terms of things to add to my meds?

My PCP and Psychiatrist aren't too keen on Doxepin and want to talk to
Dr. Castells about it (though she hasn't returned their calls), but
would that also make sense right now? I just want things to settle
down again. I feel like I was faring really well before that stupid
car accident in Sept. and ever since then things have kind of been
chaotic. I wish we could keep some sort of ongoing statistical
database for how many people are on _____ and how much success they've
found with it...something like that would be super helpful.

Anyway, any and all help would be MUCH appreciated.

wow, just wow

I feel like I complain so much about the main masto listserv that I should seriously stop referring people there. It's become such a toxic and nasty environment, something that is painfully obvious and something no one wants to discuss. Sometimes (and no offense listreaders who may be reading this) it's like dealing with a bunch of children (and I am including myself here because I would be remiss to say that I am a flawless bastion of perfection or something)...which is awesome since I'm one of the younger people on the list.

In September, some big drama transpired and people started leaving the list in droves. It has been obvious since then too, honestly. Posting in down, seems to be frequently from new people, a lot of more frequent posters barely post...it seems like a relatively unpleasant environment at times. I honestly don't know all the background stuff that transpired, but it wasn't pretty overall and no one left the situation in a 100% good place. Instead of addressing our lord of the flies type dynamic, it all got swept under the rug and the list moved on. sort of.

A few days ago someone accidentally sent an email to the list that was meant to be private. In the email they said a few unflattering things about another list member. This is an of itself wasn't awesome, but they followed it up pretty much saying, "yeah I don't care that my post could potentially humiliate the list member I slagged on, I'm glad to have gotten it off my chest."

Now, I don't live in some fairytale planet where we all get along and are best friends and sing kumbaya next to the campfire every night. I assume that people are going to dislike other people and possibly think the worst, but to be so dismissive of the fact that something you wrote could hurt someones feelings, to me, is tacky and disrespectful. While I don't censor myself on this blog, and let the occasional swear word slip in, I make a serious effort to not swear on the list because there are a few ardent Christians who are seriously offended by that sort of language. Obviously if they read this they know that sometimes I don't use the most pristine language. This is also my little corner of blog-dom, so I'm kind of allowed to call the shots. I obviously don't view the list the same way, and when I do slip up, I apologize. Not because it's what I "should" do, but because I feel bad.

But this nonsense just seems to escalate and people seem to get more angry when it's suggested, "no really, we need to start addressing this shit because it's obviously not going away". I dunno, I'm not one to avoid an unpleasant topic or situation. I'm not saying I seek conflict out, but when it continues or seems to have long term ramifications, I don't think ignoring it is the best thing ever.

I have a few huge pet peeves, and one of them (when dealing with mailing list etiquette) is when everyone starts posting to drop a subject, why a subject sucks, why the people discussing the subject suck...and it's so fucking counter productive it makes me want to tear my hair out. If it bothers you, don't get involved. If you don't care, don't get involved. But when people are emotionally engaged in something, if you tell them they are a moron, chances are it's going to escalate things. You don't like a situation, you think you are better or unaffected by a situation? IGNORE IT. Don't waste the time dismissing people who feel differently.

I just am left feeling like I can't trust the list. Whenever there is some high drama I inevitably get between 5-10 private emails detailing why some person or another is a (insert reason why they might be lame) person and should be avoided. I don't like it because it is starting to feel like we may have teams in the background with these invisible lines drawn out in the sand...sort of "either you're with us or against us" type mentality going on. I don't want to get involved with people's drama off the list. If I have something to say to someone, chances are I will say it publicly because I don't want to take part in some cloak and dagger bullshit in the shadows. I prefer there to be a level of transparency in how I operate. Which again is why I'd prefer the list to actually try to solve interpersonal problems as opposed to ignoring them till they go away.

I mean, I don't know, I'd rather deal with a short burst of intense discomfort than trying to ignore a small nagging one for months on end...which is unfortunately at odds with how things are apparently dealt with.

It's just annoying because I know the list can be better than that. Either that or it's all been phony sympathy and empathy meanwhile everyone is just waiting to see someone mess up and then attack.

grrrrrr

before the holiday I was telling my psychologist how optimistic I was about things. I had the driving down, new psychiatrist, things seemed cool. Ever since Friday I've been shocking on and off. Right now it seems the most likely culprit is my husband (haha!) as he was sick for a week and chances are I picked up his cold (I guess I have some swollen lymph nodes and my right ear is inflamed) and the cold/virus/whatever is causing my mast cells to get all up in arms.

Soooo I'm on Atarax until this calms down. Atarax is very soothing, which is really needed since I was experiencing some serious tachycardia during my attacks...and tachycardia is really really scary, and of course anxiety leads to more tachycardia which leads to...you get the picture.

so that is where things stand for me.

here we go again

So I've been doing very well in general since my Masto diagnosis. Up until last night, the only time I came close to shocking was when we were in the car accident, and that was probably caused more by stress than anything.

Last night I had dinner, was watching TV with Ethan and Peter, and suddenly my heart rate went up (it has been high for a few days) and then I started sweating, and shaking, and feeling really nauseous, and then my stomach contents decided they needed to get out of me in the fastest way possible resulting in terrible stomach pain. I was able to stave off the vomiting (i really don't like vomiting, plus
once I started feeling really unwell i popped zantac and benadryl and didn't want those to come back up) and laid in bed, stationary, until i was able to meditate and get my heart rate back down (the drugs helped obviously).

Long story short, I don't know what happened, or more importantly, why. I don't know why my heart rate has been elevated (my pcp had suggested a virus when I saw her Friday) I don't know why all sorts of badness happened last night as I haven't deviated from my habits at all.

Has anyone had a shocky episode for what seems like no reason? I think I barely dodged having to use my epi pen last night or going to the ER (Ethan and Peter took shifts watching me while I slept to make sure I was breathing, and breathing normally) and I'd love to know what happened or if people have experienced episodes like these with no really obvious cause.

Luckily I have an appointment to see my Masto doc later in the week anyway, though, so that is good. I'm going to try to get in to see my PCP tomorrow to have some more bloodwork done to see if anything looks off, and maybe see if I can get another EKG or something.

The whole experience was just very scary and unreal and well, just wrong. I don't want to go back to feeling like I did in the spring of '07. That was a terrible time in my life that does not warrant repeating. I imagine this is a sentiment similar to that of many many many masto patients.

ow ow ow ow

Ever since I went on the Cipro I've had on and off leg pain. It's been a blast. It comes and goes, though in the past few days it's gotten a lot more concerning.

I went to see my PCP (something I am loathe to do, even moreso after the stupid somatic diagnosis) and she did a d-dimer test which came back negative (which I feel pretty good about since false negatives are really rare) and also listened to my lungs and did an EKG, neither of which seemed indicative of a clot. In addition my back has started aching and I have little to no appetite.

I'm seriously bummed about this. I don't know if it's viral, an infection, or what. All I know is that it hurts and that my heart rate is up (not too high but around 100, which sucks because I had it down to the 80's for a while there when I first started Gastrocrom.

All in All I don't know if this is masto or something else. I hate the whole trying to figure out what/why I have certain pain.