Wednesday, July 27, 2016

tomorrow is bad touching day, socks, and thoughts about death

I get all the pre-op poking and touching tomorrow, my personal favourite, the trans-catheter urine sample. the abject indignity of it is unparalleled. Fortunately the last 2 times I endured this it was with an awesome nurse who makes me feel as comfortable as one can be while being defiled in this way. Hoping to go 3 for 3 and get her again tomorrow.

In other news, today I threw out most of my socks. I had a LOT of socks. They were mostly old and ratty, which didn't matter because generally if it's sock weather, I'm wearing boots so as long as there are no holes cutting off circulation in your toes, who gives a fuck? Anyway, my point of this is while my inner sock hoarder freaked the fuck out, I casually thought to myself

 "If I'm not dead in 2 weeks I'll get more socks"

 Look, last weeks revelation about the actual size of my aneurysm is doing my fucking head in. I've done just enough reading to be dangerous. Right now I'd equate the feeling to when you were a kid, and you've overfilled a water balloon but you think you can still make it across the lawn with it to nail your friend in the face with it. Except you only get about 3/4 the way there before the balloon bursts all over your hand. It feels like that, except happening inside you and completely out of your control.  When you're a kid it's thrilling, as an adult it's a reason to play it a bit fast and loose with your Xanax prescription. Anyway, my long winded point is, you have to be comfortable with that you could die. I am. I most certainly don't WANT to and will make every effort not to do so, but, you know, shit happens. And a lot of awesome people have already died this year - AM I TO BE PART OF THE RAPTURING OF THE AWESOME!!?? #STAYTUNED

Sunday, July 24, 2016

Schroedingers Aneurysm

 This was last week. Doesn't this look nice? It was completely wonderful and everything 5 days at the beach should be.

This week: echocardiogram, a cancelled CT Scan (it was my understanding I didn't need an angiogram (havw I mentioned I DETEST Angiograms? I do) but now maybe I do need one. Anyway that story is still unfolding. I will update as information becomes available) Next week is the dentist, and then another pre-surgery touch-up.    

Surgery is scheduled for Aug 8. My current feeling on the situation is dread. Not of the actual surgery, THAT really has nothing to do with me, either I die, or I wake up. when I wake up t becomes my issue. What I dread is how fucking unpleasant it all is. The lead-up, with the testing and the poking and prodding and invasive touching. The follow-up, with the exhaustion, and the general feeling of like shit. The naked vulnerability, I loathe it.

 I know it gets better, I know it could be worse and I am lucky as hell. I do, I have insurance, the support of friends and family, were it not for a series of events that led me to this point, I would more than likely be dead. So I am grateful that this is happening but OH MY GOD I DON'T WANT TO. 

Plot twist! (well sort of)
(well not really, its an update, more than anything)

So I had started this post the other day and then I forgot about it and then yesterday I had my echo and CT. At least that,s how it started Had the echo on schedule and the tech was so horrified by what he saw he immediately brought me down to the er where hushed conversations were had and when I asked what the actual fuck was going on I was told a doctor would be along to talk to me. So it turns out that my aneurysm is at 9 cm and all the doctors and nurses were very twitchy about it and asked questions about am I ok and did you walk in here and how much pain are you in and I'm all DUDES I JUST CAME HERE TO GET AN ECHO AND MAYBE A CT SCAN. It didn't help that I hadn't eaten breakfast, and by 2 or 3 in the afternoon, whatever it was I was becoming hangry. For most of the day I thought I would be staying there and getting emergency surgery that night, I got a CT Scan w/contrast around 5, FINALLY after calling my GP, my Cardiologist and god knows who-all else they finally talked to my surgeon, who had been surgeoning all day  - he looked at the tests and said it wasn't leaking and I could go home and continue with the existing plan. So. Surgery in 2 weeks and 4 days. I am comfortable with this decision.

That said, I was a lot MORE comfortable before I knew how uncomfortable I SHOULD feel.

Wednesday, June 29, 2016

Because you have to laugh.

Carey Marx is a British Comedian who had a heart attack and made it funny. Sadly his standup bit on BBC Radio is no longer available, but this is funny too.

Tuesday, June 28, 2016

And we're back...

Gosh I haven't written since march? Really? Ok, so to update…

Surgeon had an extended recovery from his illness, turned out it wasn't nearly as pedestrian as an inner ear infection, and involved brain inflamation, severe vertigo and other fun symptoms one doesn't want someone performing a long haul surgerey on them having.  In the meantime I accepted an offer from friends  to fly me out to Chicago in exchange for a week of house sitting and tending to their small cat army while they ran off to frolic in Maui.(free flight to Chicago and a week of 5 cat cuddle-puddles? IF. I. MUST.) 

As you may recall our heroine (moi) was all kinds of dark and twisty earlier this year. Arriving in Chicago it was like the weight was lifted. I felt like myself for the first time in longer than I can recall, I saw all my favourite people, and did some really fun photography for my friends in a Go-Go troop, called The Janes,
I came back from Chicago feeling entirely myself again. I wanted to hold on to that. To that end, I decided for my own sanity, I needed to step back from this whole thing, and take back control for a while. I had an appointment scheduled with my cardiologist at the end of June and decided that would be when I'd get the ball rolling again. So that appointment happened last Friday, I'm now awaiting scheduling of a CT Scan and have an appointment to see surgeon in about a week and a half. I have plans for July, both beach and photography related, and I don't really care to change or cancel them so if all goes according to my plan, surgery in August? What I've learned however is that none of this is really up to me and it will happen when it happens. I just hope my CT isn't so grim I find myself canceling plans and checking in 2 weeks from now. That seems unlikely. Lets hope shall we?

* If i didn't mention it before and you're someone who doesn't actually know me in the meat world, I lived in Chicago for 13 years, and returned to Massachusetts when it became clear my Mother was declining and Dad had a lot to bear on his own, after Mum passed away I stayed in MA with Dad. 

Thursday, March 10, 2016


So I spoke with my surgeon last week, he is back to work but not fully better yet, as he had suffered from some kind of brain nerve inflammation/infection that caused terrible vertigo (how shitty does THAT sound?). He is doing small procedures but since mine's a 12 hour haul I'm going to talk to him again in 4 weeks and see where he's st then. Not thrilled about this further delay but shit happens.

So in the meantime I'm trying to get some  (doctor sanctioned moderate) exercise, drumming up work (who needs photography?) and keeping calm and carrying on. Yep.

Wednesday, February 24, 2016

Continuing to circle the airport....

*heavy sigh and an eye roll*

So late last week after sending my Cardiologist to do some nagging on my behalf, I got a call from the surgical coordinator on behalf of my surgeon. It hasn't been a good year for my surgeon so far. He had to take time off to go out to CA for a couple of weeks when his father suddenly had to have open heart surgery, and then, no doubt due to the cesspool that is airports and airline travel, he got sick himself upon his return. I assume some kind of inner ear type thing since he has apparently been experiencing balance issues, which clearly makes him unable to perform surgery.


I was offered the option of seeing another doctor but not at the same hospital. In addition to not wanting to forge a new relationship with a new surgeon (my guy didn't kill me the first time, I'm gonna trust him to go 2 for 2) I also have no interest in having to go through all the testing and bullshit AGAIN, nor having to drive into Boston or Newton, where they keep the other good hospitals. I can wait. Hopefully not for much longer. Coordinator said he would contact me in 2 weeks (so, next week) and assuming the doctor was all better, we would schedule my surgery asap. If I am in the hospital by mid March I will be happy (albeit surprised)

I'm feeling slightly less spiky since my last post and while I still feel rather broken on the inside I don't feel quite so much like I'm going out of my mind. I'm trying to get more exercise (and by exercise I mean walking a few times around the grocery store/target etc) but anything strenuous than walking is exhausting. Yesterday, earlier in the day I was up and down my basement stairs trying to get some things in order, then I went to my studio. Since people park like complete twats (you do not need to be 5 feet away from the car next to you) I had to go to the additional parking lot, which involves a flight of about 30 steps up, and then down again to get to the building. Even though I scaled the stairs slowly, breathing deeply the entire way I still had to stop at the top for a minute, I literally could barely breathe and for the rest of the day I was absolutely exhausted. I have never been the fittest person in the room and I doubt I ever will be but I never thought I'd actually MISS exercise. My god I'd love to be able to go to the gym and do a 30 minute speed walk followed by some weights. I'm even thinking about outrageous things like getting some personal training and maybe trying Couch to 5k (Obviously once I'm all fixed and docs have signed off on it) Not sure my knees, hips  (and lets be honest, my tits because even in a sports bra they fly around like puppies fighting in a pillowcase) could bear running, but perhaps a gentle trot.  I just want to have energy again. I honestly don't remember what that's like.

So that's my gloom and doom for today. Peace out, bitches!

Monday, February 8, 2016

So it's February

Today marks 4 months since my surgery was originally scheduled to happen (before it was pushed back a week). Today I'm waiting to hear back from surgeons office about a surgery date. A week and a half ago I had a trans-jugular liver biopsy, which I have to say was really fucking unpleasant, but my liver is the one that pulled the shenanigans that cancelled my surgery back in October, and the concern is still that my liver might not survive the surgery, which would mean a liver transplant as well, which is super duper awesome. I really hope it doesn't come to that, but there's no way of knowing. Whatever the outcome, it should happen in the next few weeks. Since I basically had a nervous breakdown in front of my surgeon when I saw him a few weeks back I'd like to think he realizes that whether or not he has patients that are more urgent than I am, that I am coming apart at the seams and this has to happen soon.

So since the debacle last October I've become more and more...I don't know...damaged? neurotic? anxious? depressed? I don't know how to describe it except to say that I look at pictures of myself a year ago and feel like I don't even know who I am anymore. I've let this shit define me, so in addition to the actual physical healing process, I will also need to do some serious work on my psyche. I'll find a shrink and whatnot, but for now I"m just keeping my head down and trying to stay sane(isn) until this is over. I don't think I've ever been this unhappy in my life. No breakup, no disappointment, no passing of a loved one, no teenaged angst has ever left me feeling so completely detached from who I am. This is not who I want to be. I don't want to be heart surgery girl. I don't want to be fucked up liver girl, I don't want to be always greeted with a sympathetic-head-tilt "How are you doing?" girl, I don't want to be cries-at-the-drop-of-a-hat-for-no-logical-reason girl. I want to be photographer girl, world traveler girl, works out at the gym 4 times a week girl, I want to be healthy, I want to be strong, I want to not be whatever the fuck it is I've become.

So that's where I"m at. Time for a Xanax and a nap.