Friday, April 30, 2010

trashed, but not sleeping

i can't sleep. i am so, so worried. and angry. mom went to her oncologist in november about her breast area, and was told by his partner that rapidly-progressing breast cancer was an 'old wives' tale'. i am seriously overmedicated at this point, and i can't turn off. help.

Thursday, April 29, 2010



So I am sitting here silently raging, and Meg informs me that 'this'
(meaning my way) is not how it is done. I finally asked her how she
became such an expert, and she tells me that she already phoned the
number I gave her, and they told her they have a huge waiting list,
referral is required, blah, blah, blah. I at least give her kudos for
phoning. As she is droning on, I just honestly feel like giving up. I
mean, it is clear that feet (and knuckles, imo) are being dragged. So
I tell Meg, just factually, 'you know that, at this rate, if this is
angiosarcoma, Mom is not going to get treatment in time, and she is
going to die'. Then Meg blew up at me and told me she didn't think I
could do any better than she has of getting a TENTATIVE local second
opinion, and a promise that pathology reports would be made available
'asap' (a quote which, if you will note, does not contain an actual
date and time). I told her to give me the number to the oncologist,
and we'll see about that. I just got off the phone with Johns Hopkins' centre (see the
super-informative link in my tweets), and Mummers' appointment is the
first of next week. I spoke with them and got it set up (and already
approved through Mom's insurance, tyvm) after I got off the phone with
Mom's local (and probably former, snicker) oncologist and explained to
them that I has an Intarweb, and I know they have fucked up. His nurse
came up with some farkakteh tale about how this has all already been
discussed with Mom (erm, not), and Dr Oncologist was going to sit down
with her 'sometime' next week and discuss options, and then... know, I would really love to tell you the rest, but about that
time her voice kind of trailed off, and I started seeing swimmy things
in my eyes. I may have raged. Not sure. Oops.

Butsoanyway, while I was typing the above, Meg was giving (because Dr
Oncologist's nurse has expressed a preference to not speak with me
again, something about a bleeding eardrum) to the oncologist the fax #
and address for all the mammography, MRI, ultrasound, and biopsy
materials to be sent to Baltimore. Meg wanted to know what I was
typing here, and I told her 'death threats'. :D. She said she wouldn't
be surprised. She wanted to know why she got pushed off when she
phoned Johns Hopkins, yet I can get Mom an appointment 'just like
that'. I told her, honestly, that I have no fucking idea. All I did
was the same thing I did last night: I phoned and told my boggle to
the nice person on the other end, and I got help. To make her feel
better, I suggested perhaps it is that she sounds uber-competent on
the phone, so everyone thinks she's got it all taken care of.

Well, what in the fuck was I supposed to say? I *don't* know why
people did stuff for me and not her. I would love to know why, when
she asked, there was a waiting list, but I got an appointment (already
rec'd the confirmation email, new pt # assigned, insurance approved)
for the soonest possible surgery consulting. I have no idea.

If you ever face a similar issue, I guess just keep phoning people, or
walking down the hall, knocking on doors, until you get the answer you
*want*, not whatever is convenient? Maybe that is it? But I really
didn't phone all over...maybe I just sound like I need help?

So...mission (kinda) accomplished. I should be writing, but I have to
lie down for an hour 'cos I have a really awful headache. I hate it
when people are discouraging and all giving up and shit, and I am
really having issues from all the 'wowzy-wowzy-woo-woo'
knuckle-dragging shit going on before I accepted Meg's challenge to
'do better'. Feeling overwhelmed, desperate, stressed...all that I can
handle; feeling as if there is no hope makes me feel ill, and I've no
tolerance for it. Hugs and love to you if you read this. And if you
do know me and don't already know, because I am friended with several
of Meg's coworkers and cohorts (much to her chagrin, I'm *that*
lovable), I have been ordered by Meg to NEVER post anything regarding
family crises or disputes on Facebook, especially as regards Mom's
health matters. I did it once, and was read the Riot Act for a week
solid. So, as always, this is the only place I can *really* be me.

Christ, I have a headache and nausea now. Blecch.

Mommy update

Ok, so in addition to everything else, Mummers has been tentatively
diagnosed (by her oncologist) with breast angiosarcoma. This is not a
good thing. So we're talking about getting her to a more specialised
unit, as this is a fairly rare cancer, brought about by her breast
cancer radiation years ago. Her oncologist here has never actually
seen a case of radiation-induced breast angiosarcoma, which is why he
will mumble 'it doeasn't look good' like a retard, but wants to wait
for yet MORE pathology reports to come back as angiosarcoma before
actually, like, doing something. I guess he is his own second
opinion? I really don't know. Needless to say, I am stressed out. And
I have ten hours to finish writing two articles. Isn't that fun?

What, in my opinion, is added ridiculousness is that Meg and I are at
odds with each other as to how to best direct Mummers; both her
oncologist and pathologist have basically said, 'ummmm...angiosarcoma;
I dunno'. And in my mind, I want to start doing that second
opinion/treatment thing NOW. Google 'breast angiosarcoma'; it is not
promising. If it is metastatic, she may have 1 - 3 months. Her
oncologist and pathologist DO NOT KNOW if this has metastisised, I
think cos they don't know what they are looking at, cos it has taken
them all this time to get to this point. My mind says get the referral
and go; Meg's says wait. From what I am reading, there is not a lot of
'wait'; she needs to be in surgery immediately. Mom, as usual in a
crisis, is wandering around -- figuratively -- like a chicken with its
head cut off.

Yesterday, my plan was to get her biopsy, PET, &c., to an expert
second opinion, and at this very moment I am blogging so that I am not
raging at Meg; somehow Meg has turned what is, to me, a crisis
evacuation into a Sunday drive. I took today off all official work so
that I could write and get this taken care of, and Meg does not want
me to even phone to ask why Mom's information has not been forwarded

I really *am* raging, you just can't see it. :-/