Phthalocyanine thoracic corset
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Twenty seven more days (and gratuitous photos of beautiful places)

3/25/2016

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I have some photos and videos from Utah.  As expected, being there was like albuterol during an asthma attack. I will upload them.  It was lovely.  I did blow a tire on the way home (west of Glenwood), which was a bit of an inconvenience.  But I'm a girl who can change her own tire, even if I have a husband to whom I call and whine about it.

I have some photos of me getting my Nightingale nomination, too.  That was a lot of fun, and deeply cool. 

We had a blizzard this week.  It's a technical term, blizzard, something about speed of the wind and amount of snow.  We got 26 inches of it piled onto our deck. 

Sorry I don't write much.  It's weird to have other people be aware of your own mental dialogue.  Especially when you know full well there's not a damn interesting thing going on in your head. But this was the plan all along...to blog this in case other people wanted to know what's goin on.  And possibly for other adults considering this surgery.

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Been optimistic and looking forward to surgery this week.  Optimism is cool.  I can see why people like it.  Trying not to be too distracted by the fact that I have almost no new work projects going on.  And I'm still transitioning finer points of stuff only I do in clinic over to my nurse partners in crime.  They're going to be fine.  It is all going to be fine. 

I work with really good people.

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The email announcement that I'm going on FMLA goes out next week.  The nurse we interviewed and loved didn't take the job because of the long commute for her...but Sam will get an agency nurse who can just do prior auths all day while Denise and Kate do the more interesting things. 

I have to remember that the time, once surgery is done, will actually fly by.  And I'll be back before before they know it.  And being home, it's not like I'll feel like I've had any sort of "vacation."  I've taken a few things home from my desk, but it's still mine and I'm coming back.

I say all that now, with a lot less need to point out "...unless they put rebar through my myocardium."  Because she won't.  And my squooshy lung fields are going to be fine, too.  Probably she'll crack some ribs.  I can hope that won't happen.  But ...I've got a pretty high tolerance for pain and a pretty low desire for narcotics.  I didn't like them when I chopped my left fingertip off, and I didn't like them when I picked the fight with the Pontiac.  I'm ornery.  If I didn't come back to work without something to grouse about, people would wonder what's wrong with me.
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They're going to fix me in Phoenix.  At least, this is the idea.  And once they fix me, I want to know why it got fixed.  Because of the twist in my sternum, I'm not getting pressure on my right ventricle.  But it feels like pressure.  And yes, subideal that my left lower lobe is smushed, but when I climb up a canyon, the problem FEELS at least in part like it's cardiac.  Maybe it isn't the right ventricle, maybe because of the twist it's pushing on my ascending aorta or pulmonary artery or some damn thing.  I cannot prove where the problem is.  But once she sticks that camera into my chest cavity, she should be able to see what, exactly, is being squashed in there.

Almost everything is done.  Haven't paid the catsitter yet, but I've booked her.  Haven't called to get the FMLA paperwork in my hands yet, because they want to give me that after I leave.  But it shouldn't be difficult for me to get that into my hands next week. 
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My mother wants to discuss what she's going to be cooking for my family when they come out after surgery.  Actually, what she said is she wants to know "what I have" in my kitchen because she's already planned the menu(s).  In other words, my mother forgets I'm a 44 year old married woman with too many dishes and pots and pans...she still remembers a time when I was 22 and had a wok and two bowls.  (As if there is ANYTHING wrong with owning nothing in your kitchen except a wok and two bowls.)  (Mark asked me a few weeks ago if I would replace our chipped plates...you know, because we have two sets of dishes, sets we each had before we married...which weirdly, sort of match.)  (I haven't done it yet.  I think I would rather they chip and eventually break, and by the time Chase is out of the house we can go back to a wok and two bowls.)  (And a crock pot.)  (And, okay, the wine glasses.  But that's it.)
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Anyway.  I'm rolling with my mother planning menus.  I appreciate that she wants to cook.  Because I won't want to.  It gives her control when she has none.  She has spoken to me in relatively short conversations on Sundays.  I think she's afraid she's going to let on how hard this is on her.  She's retired as of January 1 this year.  And instead of bounding into her new lease on life, I think she's home, paralyzed with worry, sometimes.  I hope I'm wrong.  Because I really hate to think about that. 

Dad is fine.  He worries about my car in blizzards, because that's what fathers worry about and this worry reassures their daughters that things are normal in the world.  My in laws have been wonderful, too.  It's nice to have a cheering section.
Saw Bex last Saturday.  She came over and we tasted wine all day.  We tasted our way through two bottles of chard and two bottles of port.  She's going to be doing a nursing certification course the week I leave, and then she comes home briefly, and then flies out to the Pac Northwest the week I return.  She didn't know the date I was headed out and it is totally fine.  I'll need her much more after my mom and dad go home, I think.  To get out of the house. 

Mark has been really good with putting up with me.  My mood swings and worries about the surgery (because there are no mood swings or worries about anything else) in the past few weeks have been mostly nonverbal.  (Okay there were a few days I went completely postal in there over some ....scheduling issues regarding Chase, but that was never directed at him.)  (Or Chase.)  Mark goes off and does his own thing when I avoid him, and he stays when I sit with him.  He doesn't ask why.  Which I appreciate. 
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Tomorrow I count down to 26.  And I think it's gonna be good. 
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Glenwood

3/4/2016

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After work, I went out with my nursing partners in crime.  Was lovely; fun was had by all.  And by the time we'd snacked, and had a beverage each, the traffic out of Aurora had died down.  That was 6:45. 

There was a rock slide in Glenwood Canyon, but they have the eastbound side open to single lane traffic each way.  It slowed me down, but by 9:30 I made it to Glenwood itself and decided to stop for the night.  Yes, I could have made it all the way to Moab, and even easier to Junction, but I've been up since 5:20 and I was still in my scrubs.

Called Mark to let him know I made it this far, got a glass of wine from the bar (a generic magnum brand, but surprisingly quaffable) and had a lovely hot bath.  When Mark and I do build a house (well, when we pay somebody to build a house), there will be a deep bathtub.

I reread the previous post from three weeks ago.  I need to learn that plans change at the U as capriciously as an eight-year-old girl's moods.  There will be no mitosis in May.  At least, that's this week's decision.  Good.  Sam and I were both drinking a little too heavily and sleeping very badly that week.  It got better.

The date for surgery was confirmed for April 21.  Six weeks from today, I will be making some night shift nurse's day a living hell.  I am already thinking that whoever I'm most awful to, I will nominate for a Daisy award for putting up with me.  Maybe I'll bring some apology cards with me. 

I did not leave us much time cushion in travelling....we fly the morning of the 20th, and have the preop appointments at noon, along with testing (another EKG, I'm sure they'll take blood, a type & screen, etc).  They want a f/u CXR, and I left Monday and Monday only for that.  We're flying back the morning of the 26th, on first class (a suggestion from the pectus blog).  It's not a long flight, but my guess is that I'll be glad that I can recline.  I got travel insurance, in case.  And the car is done, as is the hotel. 

Now we wait. 

Chase will be staying with his mother.  Juliette and Richard have been really great about that.  We told them this was coming, and it's a huge relief that Chase is taken care of that week.  If we didn't share custody, we'd have the hard choice of scheduling my surgery around his school stuff (which delays us until June, and Dr. J was already booked in June for this reason back when we went to AZ for the consult), or pulling him out of school for a week.  Subideal.  And I would not be excited for him to be there the week of surgery.  I don't want him to have to see me in pain.  I don't want him to have to see me in a hospital bed.  I think some illusions of parental bullet-proof-ness are a good thing until he's an adult.  I'm going to be frustrated that I can't pick up things, and I'm probably not going to handle it with a lot of grace.  I wish I were that person, but I know what I am. 

And if anything goes badly, I don't want him to be there.  Best he be home with his mother.

He comes back home with us the day after we fly in.  My folks will already have arrived, and by then I will hopefully be able to be more functional.  At least I'll be less crabby, just by being home. 

I called the FMLA people, too.  They are sending me some stuff in the mail that will tell me what to do.  I saw my new PCP (my other PCP moved into an administrative position...which sucks, because I really liked her).  I liked the new one well enough, and she's willing to help order the follow up CXRs, but she wants the surgeon to fill you the FMLA.  Shall see how that goes.

Work people are being great.  I feel like I'm dying by teaching Kate and Denise "my" work.  It was weird enough sharing my favorite pulmonologists with them, but they've taken the lead, which was desperately needed for pulm, and is as it should be....but it's weirder still to share my nephrologists.  They're setting up kidney biopsies, and asking how to do dialysis start stuff.  I want them to succeed.  It's all very uncomfortable, though. 

Wearing the brace garners questions.  Up until I started wearing it more than four hours a day, I'd only told three of them (most of the staff, yes, but only three of the MDs).  And because this is health care, when you wear a brace, people ask.  And no, it's not easy to wear my scrubs on top of it.  Health care is not like other businesses where people won't ask "what's wrong with you?" out of politeness.  Nurses and doctors do not share this respect for boundaries.  Sometimes, I'm telling people it's to keep the alien inside a little longer.  But often, I am telling the truth, typically in as few sentences as possible before changing the subject.  I not only feel like I'm dying because I'm training others to do my job, but that I'm wounded and broken now too with the brace....and I've got six weeks left.  Which is a lot of time.  Or.  Hardly any. 

The most I can wear the damned thing is 7.5 hours now.  Strangely, though, when I have it off, I notice how much I slouch.

But generally speaking, I resoundingly do not wanna talk about it.  It's in my face all the time.  Concerned and caring people ask what I did to myself, and ...I spoke with an adult son of a patient once, and he was complaining that his mother was "noncompliant" (his word) with wearing oxygen.  He said, "She's very vain about it."  I told the son that his mother probably was not "vain" and we don't think people refuse to wear their Os because of vanity.  People judge.  People look and people with oxygen and they think words like "geriatric," "sick," "diseased," "contagious," "weak."  All sorts of bad judgements.  I don't think it's vain to not want to be judged.  That is how I feel about this brace.  "Injured."  "Weak."  "Hurt."  Maybe even "drugged," (which I am not).  And it makes me feel cornered.  Or like I should protect my stomach from a large bird ripping out my entrails. 

There's nothing rational about it.  So I answer the concerned colleagues, because they care, and I am actually grateful for their concern and kindness.  It's just hard to stuff that fight or flight thing back down my throat.  And it's constant.  Every time I hand over "my" work, or someone asks "Hey, when is your surgey happening again?" or "What'd you do to yourself?"

So I'm going to Utah.  So I can sit on the bones of the earth, in the ocean that isn't. 

I need it.  It's like air hunger how much I need to get to the desert.  Everything is good.  Never better.  No, really,  The part of my brain that is not awash in irrational chemicals knows this.  My limbic brain has been guppy breathing all week.  You'd think booking the flights would help; it didn't.  That part of my brain will only be fine when I feel the fine grit of warm sandstone under my hands and feet.  And when the sky is big enough, and the air has the faint sweetness of juniper, and I can hear raven wings over a canyon.  That will give me air. 

I think I'll go to bed.  And get up before the sun and go. 

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    I'm a middle aged nurse with a hole in my chest.  I created this because I'm intending to have that fixed.
    I used to paint, and now I make quilts.  But I'm not done painting.
      In addition to working full time, I am picking at a master's (though I haven't yet committed to a master's in what.)

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