A Ha. Not the band.

There are no huge a-ha moments of this experience, e.g. I need to exercise more, I need to spend more time with the kids, this is my wake up call, life is too precious, you only live once, focus on the happy, blah blah blah. I am proud there are no a-ha moments. Instead of a single epiphany, this journey is serving as confirmation that fuels me with confidence. Confirmation that my path is good, and all that informs it is good, as-is.

Like wow. I love that and this feeling. No major shake ups needed. Continue to follow my instincts. If anything they have crystalized my goals. It was the push to say, yep, that voice inside is right and push away doubt, push away noise.

Side note. Being 40+ rocks. I finally found peace after years of intense insecurity. The last few years I've been looking at how I was subconsciously unhappy. Pretty stunning stuff to navel gaze about, when time permits.

And for those who are like oh no, now she will really be impossible; now she is more emboldened than ever. I say this to you: Eat it. Or: Suck it. Your preference.

This concludes your Oprah moment today. That is all.

All Pozzie Baby

Annie is looking around the doctor's exam room, "Is there a clock in here?"  "Ah, no." Dr. Kim response with a laugh,"That's your heart!" Patient shrugs shoulders and sighs out loud. 

And that was the extent of negativity at my six week follow up visit yesterday. It was all pozzie, baby! (Pozzie is Libby's newest word; slang for positive. This is the same woman who also gave you poopalacha; slang for negative. But I digress.)

The headline is that I won't be going back till next year. ONE YEAR. As in scram kid, don't wanna hear from ya. Fine, fine, fine with me. Some of my favorite quotes/moments from the appointment:

"Isn't that beautiful?" Surgeon reference to my EKG. 

"You look so great." 

"Oh, that's so nice. I showered today. And brushed my hair."

But by the 5th to 10th mention of "you look so great," I just am beaming proudly at their gushing. 

"You'll be graduating to the normal echo lab now. You are no longer a congenital patient."

Meaning the defect I was born with, is now gone baby gone.

"Its so quiet in there now. Wow." Cardiologist reference to my heart beat through a stethoscope. "It used to be SO loud. All the blood through that tiny hole." 

My own experience in the echo lab shook me. I was laying quietly on my side and the stereo speakers of the ultrasound machine blasted my heartbeat against the walls. My new heartbeat. Listening to it the first time. Made me wanna cry. No. Don't cry. Getting teary eyed all over again now. It's just so beautiful. It's no longer LUB DUB SWISH. LUB DUB SWISH. (Swish was the regurgitation of blood flowing backwards through the valve b/c the flaps didn't close properly aka leaky valve.) It's simply, LUB DUB. LUB DUB. LUB DUB. It's so clean. It's so quiet. It was one of the best moments of my life. 

I waited till I was in the elevator, finally on the bottom floor of the parking lot, by myself and just cried. The tears were quiet too. There have been surprising very little tears on the whole journey since we boarded this train. There were plenty of fearful tears on the platform, back in Feb/March but come September, this was joy.  

Obviously the whole experience made an impression. And to top it off? The echo tech Karen I just met reminded me of my Mom. She shows herself in the most unusual and unexpected places and spaces. Petite 100lb 5' 3" short gray pixie cut with glasses. Had leukemia and successful bone marrow transplant six years ago. Alas Karen was merely missing yelping in Polish, shaking her finger in my face and massive gap in-between the middle teeth. 

Perelman Center for Advance Medicine

This monstrosity of glass, of offices of advanced medicine, that I take pride my dollars must have helped fund, will not see me till these leaves fall and regrow and turn color again. That hospital across the street that has seen me four times in seven years, may never see me again. I bid farewell to my surgeon, "Don't take offence, but I hope we don't meet ever again. But thanks for the jewelry." I bid goodbye to my cardiologist, "Don't take this the wrong way, but see ya next year." To Diamond Dave, nurse practitioner par excellence, liaison of all things medical, tightrope walker of doctor egos and deft, witty deliveries, "I only hope to bump into you at Trader Joe's again."

There are things over the coming months & years to keep an eye on. My heart has had been masking this the defect by tweaking its architecture and flow over the last decades. Blood pressure is elevated again and we'll just redirect w/ new meds. The enlarged aorta mention to my husband and dad right after the surgery is not large.  Normal progression of extra pressure. Its within normal limits of size and not expect to maintain growing abnormally. "I would have fixed it while I was in there (if it needed it; but it didn't. Chillax)." The thickening of the ventricle walls is expected to subside in time - renormalize - but that will take a year or two. 

Done and done. But this blog is not. Stay tuned for more gory details! 

Update from the Dog Days of Recovery

The A Train All Start Team is all those folks who were our caregivers over the last month and change. Last week, the last one departed. We are now back to the Saylor Fam unit. This means so many things.

Each person who left said I was better than when they first arrived. Luckily, each person was able to step down their care a notch based on what the previous person did and progress I was making to participate.

Dog Days of Recovery Mascot
Name: Take a Load Off Annie

Alas, Tom has lost the live in nanny service. He goes back to being chief dishwasher, bather, grocery shopper and launder mat.

I started driving short distances. That freedom is nice. (In case you see me on the mean streets of Wallingford, note I am ginger on turning the wheel hard so steer clear of this Rouge in tight quarters.)

Having the quiet and time on my hands to chill alone is nice. Restorative to my health in another needed way. I hadn't been on my own since the first week I took off from work back in August. Filling my time? Not a problem!

1. Neighborhood walks - up to 45mins, 4x/week. Thy legs work well. Feels tremendous to be out in this weather and trail walks are even more fun than the 'burb walks. Use It. Or Lose It. 
2. Television - watching indie movies, Jimmy Fallon day left overs and two PBS series: Roosevelts and African Amer history by Skip Gates. Might binge on Blacklist, Downton, Girls or Sherlock but likely not enough tiiiime.
3. Adding in mommy chores. Waking @ 7a, making lunches & serving dinner for the fam. (Bless the folks who are delivering our dinners, such a god send not to prep or have that kitchen mess daily to deal with.)  This weekend we added a little minor grocery shopping & dishwasher loading. Next week I hope to add laundry. My theory is that I'll be finishing ramping up and ship shaping the home front when I go back into active work duty (vs trying to add back the old routine, as a whole) 
4. Blood tests 2x/week. The lab in my doc's office is conveniently open daily 10-11:15a and  3-4:15p. On average, I've waited 20 mins to be called up, after check in. Quest type lab isn't worth the drive; Trust. I've done the logistics analysis. 

The Prophet TSS noted if I could just get sleep, I'd turn the corner. The Prophet TSS delivery is down right hard to stomach sometimes with out sugar coating or syrup. I have a sweet tooth hankering to be catered to. (Calling my husband a "Prophet" points out that he is right. A lot. And me no like that. Especially his long term assessments/discussion points can be very correct. Damn. Him.) So when I buck and say, oh no no no, there is so much more to it than simply starting to sleep normal. You don't know how this feels, dude, yada yada. Wouldn't you know it? When I do start only waking up 3 times instead of 11 per night, mama bear turns the corner.

So that leads us to this Thursday's 6 week post op appointment. Its a biggie. Follow up w/ surgeon, echo test (ultrasound) and cardiologist. I was last seen in the office 2 weeks post op and my home nurse twice a week. Some nerves but overall def feel we are well down the right road and won't be redirected or get a new brief. I want my brief updated to remove the "Sternum restrictions" … this is where I still cannot push, pull, or carry more than 10lbs aka no more than a gallon of milk.

I still feel "it" when I do certain movements or move a bit more gingerly in some scenarios. It = sitting down or getting up from a deep chair, moving clothes in the closet to the side. So not too bad. On the other end of the spectrum, sneezing is beyond the simple word "painful" but it is something only momentarily stabbing (and normal). So we shall see.

And last note … this time warp continuum I am stuck in. Feels like I have been home f o r e v e r. Surgery feels so long ago. Like wow long. But it wasn't. At all. Literally a blink of the eye, if we were in our normal routine.

Joules Wired for WiFi

Sung to the tune of How much is that doggie in the window…. How much is that carbon in the window? Woof! Woof! Woof!

Meaning, how much does my new mechanical carbon valve cost? We've been watching the insurance claims come in and scanning for how much the actual new jewelry cost. Let alone physicians fee v hospital fees or every single itemization. IE Itemization down to the every IV, shot, black comb or post-op bra - both hospital issued, of course. (Oh that's right. Post-op hospital issued bra. Of course it is exactly as you imagine sitting there with your scrunched up face. The most scratchy uncomfortable thing you could think to place on your skin.)

Point being, everything is itemized like the Pentagon. I remember a Phil Donohue episode (!) where they itemized items for the military made by/for the Pentagon. A hammer was crazy over the cost of buying it in the store. Of course I accept the fact this is how medicine in this country is billed, because otherwise I'd be crazy right now. Like in need of serious sedation.

Jewlery. That reference came from my quick witted brother. He has nicked named me Joules and I love it. Meaning my new carbon valve is my new jewelry.

And another little know fact is that I am now wired for wifi on the inside. No need to carry a silly wireless card with you anymore, as long as I am around. They wire your sternum shut and it doesn't dissolve. It stays. They look like twist ties. Will not be setting off any airport sensors etc. I've seen the X-ray. The valve looks like a ring. Ya'll know I've slowly incorporated more rings into my accessorizing, so this just fits.

Mind you, I haven't looked closely at the X-ray … I dare only gaze across the room b/c it kinda freaks me out. I do think its worth a pic and sharing eventually because it is a gross cool. At least thats what I am telling my self about that type of stuff which is the category my scar falls into too. Or the stitches on the incision that are internal, but coming out externally and supposedly falling off. It sincerely looks like an alien thing is coming out of me. But it's just thread. This last one is more gross than cool.

Another jewelry related item will be the medical bracelet I will now need to where to hereby declare I am a bionic woman on blood thinners. Yes a bit over the top to where a bracelet i.e. maybe not really needed -- per my logic, maybe 1 in a 1MM I'd ever need this where I couldn't speak for myself. But with two young kids, they deserve it; to have this treated seriously. Besides, I found some cute stuff online and engraved it with some funny business. It will be here in another few weeks.

And finally the click clack. Oh, we can hear it. You can too, if you get close enough to me. Its the open/close, open/close of the valve flaps. The second day I was home, out of the hum of the hospital, I called Tom over and was like, can you hear this? He leans down, listens for a nano second and pops up. "Whoa dude." So it sounds like a ticking of a watch. And most bizarre … like the sound of my mom's timex watch. Yes, my dead mother's watch. Insert Twilight Zone musak.  I still have this watch as one of a few keepsakes. I don't wear it, I just look at it sometimes. "Bizarre" is obviously an understatement. The docs warned us you could hear the click clack afterwords. Hence part of the reason I named this site address tick tock click clack. We joked around I'd be coming down the hall at work and without seeing me, hey hey, here comes Annie! But its real. And I hear it. Nelson can also hear it and says mommy has a clock inside. (FYI, I have already grown tired of the Alligator in Peter Pan references aka it's not cute.)  I hope it doesn't drive me batty.

Someone told me my subconscious will absorb it eventually and I will cease to hear it. And you know me … always to be one looking ahead … this can be one of the coolest party tricks of ALL time.

Yep. That's it. No shit. 

Rusty and Tarnished

The Dude. With one of my fav beverages

How things been goin'?
Ahh, you know. Strikes and gutters, ups and downs.

The moral of this Big Lebowski movie quote is that ya gotta just roll with what life serves ya. Get it, bowling movie … roll!? Ugh. Terrible pun, I know. And I am not following that advice how I wish I could.  A little rusty and tarnished by emotions and time away from the keyboard … but let's give this a shot.

We're about 4 weeks out from surgery and I haven't been in touch much. I've been thinking of writing more. I've been composing blog entries in my head. Always a sign I need to write. Having people live with us is such a god send to this family. They've all done a remarkable job of sitting on me and loving this family in our alternate reality we are swimming in. I haven't felt like there has been time to write tho. I am not entertaining the care givers but I am not ignoring them either. Just been occupied. The house is quieting down a little with school starting last week. However my last excuse for not writing is that I've been at a loss where to jump back in. I feel like I owe ya'll a little recap of the odyssey. Scratch that. I owe myself a record to look back on.

Noticed recently I still have some tape adhesive in odd spots. I just have to scrub harder. As in, where they tape xyz tubes or iv's down to your arms, body trunk or what have you spot, left overs. I just didn't notice before. Oh please, thats not even the tip of the ice burg of the gross stuff.  You want gross? We got a couple good pics to share. But I think some folks will need to avert their eyes for I shall continue to bring my realness, which is too brash for some.

Heard from more than a few that find it remarkable that I am up and walking around and look good. I am glad for those comments from you.  I go for walks twice a day. I am not olympic speed walking of course but we have made it to target, the mall or the biggest yet excursion last week was ikea. And you know - well, you probably don't - there was no way on the planet not to walk my son to his first day of second grade. It's only 4 blocks people. Calm down. I do appreciate your surprise, dismay or caution warning flags. Its a good balance b/c my care team @ Penn … they are pretty … unimpressed. I thought taking it slow and managing my pain was the name of the game. They are keen to … let's say ... push forward motion. In general tho, that 2 week appt went swimmingly well and I am on track overall. Next up is the month visit on the 25th where both cardiology and surgical team looks inside and out.

All that said, not feeling like I've accomplished too much which logically, I know is ludicrous. I just am starting to hit a little bit of recovery wall where I am seemingly not getting better. I say this b/c my sternum still hurts and fearing its not healing correctly. There are clicks and clacks (bones or ??) very innocently when I try to move a certain way and you body sends a stabbing pain that makes you literally yelp out loud. When the hell is that over? (I just tried to look up another word for stabbing. That word is not good enough.) I am in stuck in a hurry up and wait phase i.e. sit here, rest, heal, repeat. I don't want this phase. I just want this aching to go away and every day - yes every - there is new pain or ache or pulled muscle. You try not fluffing your child's blanket in the middle of the night when you are up sleepless and check in and there isn't a blanket on him. In the moment it might be a small twinge or maybe you'll feel nothing except instincts.

Sleeping. Ay crumba. Sleep has been a fickle bitch. Up multiple times a night. Sometimes go to the couch out of desperation. When I wake up, I am very achy, sore, painful when I wake up b/c I am "resting" in an odd (any?) position. Literally frozen in place for a moment until I can figure out how to maneuver. My handsome husband or other saintly care giver brings me a cup of coffee and a pain pill. Ah, the breakfast of champions. But I digress ...

Just like they told me, recovery will be 2 steps forward, 1 step back. I hate the 2 step. This is just all bullshit normal recovery stuff.  I am getting upset that I am not "remarkably better" by week 4 of the 4-6 window they gave me. (We are rounding first base into 5th week, technically.) And sometimes it takes the full 3 month. Better not.  So in summary, ya'll knew this this type of whoa-is-me post was coming. A) I've earned it and B) It is fleeting and I don't see it repeating itself. So don't concern yourselves. I just had to get it out of my system. I am still fierce, somewhere in here. I got this. I know it. Because you told me so. Talk soon chitlins.