*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.
So.
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!
Wednesday, February 24, 2016
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.
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.
Sunday, January 10, 2016
Happy New year y'all!
Rang in the new year quietly in a small apartment in Manhattan with a longtime friend, one of her co-workers, a corgi, and a cat. It was entirely wonderful.
So with the trip to New York, came the anxiety I now experience with travel. Xanax gets me through, but it's frustrating as all hell to me that where once while en-route anywhere exciting I was thrilled, now I spend the journey haunted by dark thoughts - what if something happens while I'm on my way? What if there's one flight of stairs too many coming out of the subway and my heart just bursts? Nobody knows me, nobody would know if I drop like a stone it's less likely to be a heart attack and more likely to be aortic dissection? What if something happens while I'm sleeping at a friends house and they get to be the one that *finds me*. I refuse to stop traveling at any opportunity, but it makes me SO ANGRY that I think this way now. Will I always feel this way? Will there ever be a time in my life that I don't feel my heart beating in my throat if I scale more than ten stairs or walk up a gentle hill? Will I ever NOT feel like a tired old lady? Will I ever be able to travel to places like Lisbon again or will the hills keep me at bay? Will I ever TRUST my heart not to betray me again? I've spoken to a couple of friends who survived cancer and while Cancer and Cardiac issues are two very different animals, once your health has been compromised in a major way like that, it's very hard not to constantly wonder, what's next?
Fuck this. Fuck it all with a rusty chainsaw.
Anyway - With the rollover to the new year I am no longer able to keep pushing this impending surgery to the back of my mind. It's going to be a long month but I need to start mentally steeling myself to go through this shit AGAIN. I saw my cardiologist yesterday, nothing really came of that since he's only been my cardiologist since last June, and really, aside from my dress rehearsal last october and an increasing *like shit* feeling, nothings changed. I have the CTScan on the 14th, then follow up with surgeon on the 22nd. Then I'll get my date, then I'll know.
Meanwhile, trying to get back to work after an abysmal Xmas season
Rang in the new year quietly in a small apartment in Manhattan with a longtime friend, one of her co-workers, a corgi, and a cat. It was entirely wonderful.
So with the trip to New York, came the anxiety I now experience with travel. Xanax gets me through, but it's frustrating as all hell to me that where once while en-route anywhere exciting I was thrilled, now I spend the journey haunted by dark thoughts - what if something happens while I'm on my way? What if there's one flight of stairs too many coming out of the subway and my heart just bursts? Nobody knows me, nobody would know if I drop like a stone it's less likely to be a heart attack and more likely to be aortic dissection? What if something happens while I'm sleeping at a friends house and they get to be the one that *finds me*. I refuse to stop traveling at any opportunity, but it makes me SO ANGRY that I think this way now. Will I always feel this way? Will there ever be a time in my life that I don't feel my heart beating in my throat if I scale more than ten stairs or walk up a gentle hill? Will I ever NOT feel like a tired old lady? Will I ever be able to travel to places like Lisbon again or will the hills keep me at bay? Will I ever TRUST my heart not to betray me again? I've spoken to a couple of friends who survived cancer and while Cancer and Cardiac issues are two very different animals, once your health has been compromised in a major way like that, it's very hard not to constantly wonder, what's next?
Fuck this. Fuck it all with a rusty chainsaw.
Anyway - With the rollover to the new year I am no longer able to keep pushing this impending surgery to the back of my mind. It's going to be a long month but I need to start mentally steeling myself to go through this shit AGAIN. I saw my cardiologist yesterday, nothing really came of that since he's only been my cardiologist since last June, and really, aside from my dress rehearsal last october and an increasing *like shit* feeling, nothings changed. I have the CTScan on the 14th, then follow up with surgeon on the 22nd. Then I'll get my date, then I'll know.
Meanwhile, trying to get back to work after an abysmal Xmas season
Wednesday, December 16, 2015
And here we are again
So I didn't mean to up and walk out on y'all for a couple of months but there it is. Floundered a bit after getting out of the hospital, was very depressed for a couple of weeks and extremely anxious. Towards the end of that my back for no particular reason, became spontaneously wankered, and then when that finally cleared up (mostly) I just started getting caught up on living my life and since my surgeon didn't return my calls for a couple of weeks I sort of let myself forget about it for a bit. I finally had my cardiologist call him personally and then he finally got back to me. We are looking at a mid january surgery so in hospital speak I think that means some time in February. So Xmas in 10 days then I'm off to ring in the New Year in Manhattan (in the safety of a friends cozy apartment, eff that Times Square fuckery, even if I had the energy for something like that, nothing about being crammed into a crowd with a bunch of drunk, potentially vomity strangers is the least bit compelling to me. No, I will be sipping a polite cocktail with one of my oldest friends, a cat, and a corgi. Despite not going out I still plan to wear sequins. Because I like sparkles.
So thats where I am now. I'm not gonna lie, I probably won't post much until I have a date, but just wanted to check in and wish everyone a Happy Festivus.
So thats where I am now. I'm not gonna lie, I probably won't post much until I have a date, but just wanted to check in and wish everyone a Happy Festivus.
Monday, October 26, 2015
Not Hospital Food
So the other day, having been poking around the internets in search of what I can eat to benefit my liver, I discovered that Beets and Walnuts are good for liver health. Over the summer I became enamored of beets after a lifetime of hating them (due in no small part to a year of school dinners in the UK that seemed to come with a never ending supply of grotesque tinned beets. Every. Goddamned. Day) I learned to trust them again after a friends husband produced them in roasted form at a dinner party, then over the summer I began to experiment myself, and found that a beet salad is *divine*. This is what I came up with after reading a bunch of other recipes. I don't measure anything when I'm making food so all measurements are a guess. It's not baking, so adjust to suit your own tastes.
Ingredients:
1 large golden beet (or any kind of beet really - if they're small cook a few)
1 medium sized orange
1 small shallot
Handful of Arugula (about 1 1/2 cups)
Goat Cheese (I used about a 1/2 inch slice)
About 6 walnut halves (or if you have chopped ones maybe about 1 heaping tbs)
1 tbs extra virgin olive oil
2 tsp white vinegar
1/4 tsp sugar
pinch of kosher salt
fresh ground pepper
1/2 tsp of dijon mustard
I took the beets, peeled them, and chopped them into quarters (go for half cut if they're small)
put in a foil lined pie tin, drizzled with olive oil and salt and pepper, covered with foil (tightly) and put in a 400 degree oven for about an hour and 15 minutes (I cooked several large beets at once to have leftovers on hand, if you're only doing a small amount, or cooking smaller beets, I would start checking them at 30 minutes). Let cool
I supremed the orange (don't know how to supreme an orange? look here) and squeezed the remainders of remaining juice into a bowl for the vinaigrette.
To the orange juice add salt, pepper, sugar, extra virgin olive oil, vinegar and dijon mustard, give it a whisk.
Thinly slice the shallot, and the beets, put them in a bowl with the arugula, and toss with the vinaigrette
Plate it, and sprinkle over the walnuts and goat cheese. SO. DELICIOUS.
Ingredients:
1 large golden beet (or any kind of beet really - if they're small cook a few)
1 medium sized orange
1 small shallot
Handful of Arugula (about 1 1/2 cups)
Goat Cheese (I used about a 1/2 inch slice)
About 6 walnut halves (or if you have chopped ones maybe about 1 heaping tbs)
1 tbs extra virgin olive oil
2 tsp white vinegar
1/4 tsp sugar
pinch of kosher salt
fresh ground pepper
1/2 tsp of dijon mustard
I took the beets, peeled them, and chopped them into quarters (go for half cut if they're small)
put in a foil lined pie tin, drizzled with olive oil and salt and pepper, covered with foil (tightly) and put in a 400 degree oven for about an hour and 15 minutes (I cooked several large beets at once to have leftovers on hand, if you're only doing a small amount, or cooking smaller beets, I would start checking them at 30 minutes). Let cool
I supremed the orange (don't know how to supreme an orange? look here) and squeezed the remainders of remaining juice into a bowl for the vinaigrette.
To the orange juice add salt, pepper, sugar, extra virgin olive oil, vinegar and dijon mustard, give it a whisk.
Thinly slice the shallot, and the beets, put them in a bowl with the arugula, and toss with the vinaigrette
Plate it, and sprinkle over the walnuts and goat cheese. SO. DELICIOUS.
Saturday, October 24, 2015
*eyeroll*
Been home for a few days now. I had to take a minute, because you know? That was some BULLSHIT.
Disclaimer: I AM grateful the decision was made to step back and do more research rather than steaming in there all "Damn the liver! Full speed ahead! As with last year I can't say enough about how awesome the nursing staff was.
That said.
What would have been really super would be if before the decision to cancel was made, I hadn't first gone through all the fun personal indignities detailed here, or the self injecting twice a day, or the month and a half of mentally steeling myself to undergo this entire fucking process, or if it hadn't followed with 8 days a prisoner of my INR tethered to a heparin drip, in a dreary hospital room.
If you're in the hospital with no pressing issues (i.e.: I still need the surgery but feel no worse than I did for the past year) (ie: not floating on a happy Dilaudid cloud with a massive chest wound to distract me) 8 days of restless boredom, punctuated with multiple daily blood draws, hateful bleating alarms on your overly sensitive heparin drip, in an uncomfortable bed made for someone 6 inches shorter than you, and people waking you up in the dead of night to check vitals who occasionally have the audacity to ask (seriously mind you) if you think you would mind getting out of bed to be weighed. Yes I would mind, yes I would fucking mind a lot. (I don't feel bad about being a dick about that because in my opinion that is a completely unreasonable request) - It does your head in a bit. It's similar to the treatment you get when being inducted to a cult - sleep deprivation, horrible food, unfamiliar environment. I'm not suggesting nefarious intent on the part of the hospital, I'm just saying after several days of this you find yourself feeling somewhat dazed, and emotionally fragile, with a splash of volatile. That thing where you're having an all out ugly cry for NO REAL REASON YOU CAN SEE (IN FRONT OF ANOTHER PERSON) and your inner voice is screaming at you to shut the fuck up and stop acting like such a fucking baby but you can't because YOU DON'T KNOW WHY LEAVE ME ALONE STOP FUCKING TOUCHING ME. Still moving past all that At least today when I woke up I knew what day it was without having to check, so - progress!
So for now the surgery *is* happening but I can't currently say *when*, so that's not annoying at all. Currently I'm electing not to think about it because I have no reason to. Because I have zero control over it right now, and if I keep thinking about how much that pisses me off I will go to bed and not come out until next year.
Yep.
Disclaimer: I AM grateful the decision was made to step back and do more research rather than steaming in there all "Damn the liver! Full speed ahead! As with last year I can't say enough about how awesome the nursing staff was.
That said.
What would have been really super would be if before the decision to cancel was made, I hadn't first gone through all the fun personal indignities detailed here, or the self injecting twice a day, or the month and a half of mentally steeling myself to undergo this entire fucking process, or if it hadn't followed with 8 days a prisoner of my INR tethered to a heparin drip, in a dreary hospital room.
If you're in the hospital with no pressing issues (i.e.: I still need the surgery but feel no worse than I did for the past year) (ie: not floating on a happy Dilaudid cloud with a massive chest wound to distract me) 8 days of restless boredom, punctuated with multiple daily blood draws, hateful bleating alarms on your overly sensitive heparin drip, in an uncomfortable bed made for someone 6 inches shorter than you, and people waking you up in the dead of night to check vitals who occasionally have the audacity to ask (seriously mind you) if you think you would mind getting out of bed to be weighed. Yes I would mind, yes I would fucking mind a lot. (I don't feel bad about being a dick about that because in my opinion that is a completely unreasonable request) - It does your head in a bit. It's similar to the treatment you get when being inducted to a cult - sleep deprivation, horrible food, unfamiliar environment. I'm not suggesting nefarious intent on the part of the hospital, I'm just saying after several days of this you find yourself feeling somewhat dazed, and emotionally fragile, with a splash of volatile. That thing where you're having an all out ugly cry for NO REAL REASON YOU CAN SEE (IN FRONT OF ANOTHER PERSON) and your inner voice is screaming at you to shut the fuck up and stop acting like such a fucking baby but you can't because YOU DON'T KNOW WHY LEAVE ME ALONE STOP FUCKING TOUCHING ME. Still moving past all that At least today when I woke up I knew what day it was without having to check, so - progress!
So for now the surgery *is* happening but I can't currently say *when*, so that's not annoying at all. Currently I'm electing not to think about it because I have no reason to. Because I have zero control over it right now, and if I keep thinking about how much that pisses me off I will go to bed and not come out until next year.
Yep.
Monday, October 19, 2015
I think I live here now.
It's a whole week I've been here. To what end? I don't know. I spoke with liver doctor regarding the findings from the liver CT I had the other day and he seemed to feel that my liver is fine and would be fine through surgery. Supposedly these guys are some of the top liver people in the country and if they think my liver is fine, this is good. Maybe that means I can just go ahead with my surgery like they planned before rather than as before when they were thought there possibly might be a problem that there would have to be a new approach and perhaps instead of grafting in a dacron tube to replace the damaged aorta they would instead try and fix the aneurysm with stents, which honestly I am just not stoked about. What little I read about stents I don't like the sound of. So anyway hopefully tomorrow my surgeon will come and talk to me and tell me what he thinks now that we have all this new liver information and also hopefully my INR will be back at the level that they will let me get the fuck out of here because holy God in heaven you know it's really boring is being in a hospital stone fucking sober I mean they give me Xanax but that really doesn't help much and I'm just bored... I'm really bored I can't concentrate on reading I can't really do anything I have watched more Law & Order in the last week that I have all year and I'm ready to go home that said if tomorrow my surgeon came in and said hey were taking you back off the Coumadin were putting it back on the heparin driving it down we're doing the surgery this week I would be OK with that too I just want a timeline. I want to know when I can actually officially start planning my life again because right now I have no fucking idea what's happening and I am fucking tired of it. 
Taking my heparin drip for walkies.
Subscribe to:
Posts (Atom)