3 years + 15 days (also D-Day)

Oh soberverse, things are not great in SamLand.

We have returned from the two-day meet-n-greet at the transplant center. It was daunting.

First was the drive to Big City: two hours forty five minutes which mean some people say it's two-and-a-half hours and some say it's three....I say three.  Easy-peasy driving and the Big City doesn't have bad traffic but still that having-to-drive thing makes it momentous and heavy right from the start. We checked into the Nice Downtown Hotel and discovered their room service to be quite suboptimal...I know, totally the most minor of minor problems but Spouse - whose mother was in the international airline industry for an entire career including the sparkling yuppie Eighties - has a big fondness for room service. Also we had shown up too early in the afternoon and were both bored stiff but too tired and nervous to seek out entertainment so not an auspicious start.

First day was very long. He got a ton of blood drawn and then we had a PowerPoint presentation and met with various people in an exam room all morning. While at lunch they called because his potassium was too low to do the dobutamine stress echo which was scheduled for early afternoon so we stopped at the pharmacy instead of the heart center. We rescheduled the stress test here at home  for this Friday as in tomorrow.  He also has to get a colonoscopy (as part of "routine health maintenance - women have to get mammogram and Pap smear too) and to get dental clearance. We have a dentist very close by and she usually has excellent availability so that one should be easy. Appointment with his new gatekeeper/coordinator primary care doc is the 18th — two weeks from today. She can coordinate local care as our local GI doc isn’t available till first week of August.

It was a -lot- to take in...and I discovered that I seem to have Big Emotional Issues about being on the patient side of healthcare and about being in Big Medical Center. Got really increasingly stressed/anxious/angry and it all started resolving literally -as- we left the parking garage. There’s no doubt enough stuff there to unpack for days as I feel like some of my mother’s big issues with “sick” are mixed in along with med school stuff as I felt totally judged and like everyone thought I was crazy or awful or both.  Yes, I am totally serious. I agree it’s totally out of character but there you go. 

Spouse seems to be doing well with all of this - possibly better than I am. He agrees it is pretty daunting but do-able. After being put On The List (for transplant) one gets weekly labs and has to be ready to go at a moment’s notice. It’s the aftercare which gets hard—10-14 days inpatient then a visit three days later and then in 7-10 days and monthly visits for the first year. Lot of driving. Lot. Of. Driving. 

And although by all right I should love Big City--okay, fine, it's Rochester NY -- I just don’t. Back when I worked there every so often I’d meet someone who clearly didn’t like Philly but when pressed had no specific or even tangible reason at all — now I know what they meant. I think Rochester has lovely architecture with many - heck , most - houses -totally- my jam...and yet everything just feels weird and wrong in ways it seems crazy to even try to articulate. Odd. But I’ll learn to live with it.

We were too overwhelmed by the day’s events to seek out anything other than candy and horizontal :-).By the way...Hershey's Crunchers -- come in a bag?  -- deadly-good.

Second day.  Just meet with the actual physicians then leave from the hospital. Easier. Labs back.

MELD score of 34 which kind of expected. That's the number they use to quantify/stratify how likely you are to die of liver failure and how soon. In state of NY you don't really qualify for transplant till you hit 30 but the scale only goes to 40 so there's not a huge lot of wiggle-room. I had known his MELD was 34 when he was hospitalized but had naively hoped it would/had improved since out. Apparently not. So that was shocking enough to me.

BUT

His CEA value was 14.6 when normal is 3 or less.

Cirrhosis does raise CEA but not above ten. CEA above 10 is colon cancer till proven otherwise. Always. I am hoping it is early-stage: a polyp that just turned superficially malignant. Spouse himself is fairly confident that’s the case as “no cancer of any kind anywhere in my family” and also "the CT and the MRI didn't show anything" but 1) If you didn't do a bowel prep the CT and MRI would -not- show anything; they don't read for specific findings there as only the biggest things will show, 2) his father was adopted so all bets off there and 3) being in the specialty I’m in I can scare myself but good with “and that one patient...” stories. I know early-stage no-nodes cancer where surgery is curative is totally not a contraindication once fixed but the surgery is still no cakewalk and might have to be at Big Medical Center depending on how our anesthesiologists feel about doing him. I know at least one of our surgeons would be willing and she's slow but good so I'd be fine with that but I'm not sure our anesthesiologists will want to have that much scary-to-manage-sick-patient. The colonoscopy is going to have to be done in the OR vs the GI suite because of his underlying liver disease so I guess we will get a trial run/sense of things then.

I’m holding onto the mental video of the two post-transplant volunteers we met who looked and acted -great-.  If he can get through the surgery it’s a whole new life but that is definitely an if not a when.

Also I have been stunned by how hard I'm taking being SO tied to the healthcare system. Rochester wants to see us back in a month regardless of what happens but even in best-case scenario once you are On The List you have to get weekly labs and stay the hell put wherever "home" is because they could call you any time day or night and say "this is it; we have a liver." That's intense. So basically we are arranging things so that he takes a week to go down and tie up all the NJ things he needs to tie up (and get his dog another visit with the vet we all love down there) then he will be up here till further notice.

So that's how I am. There's just SO much to  I've been treating all of these pieces of data like clothing in a whole brand-new closet which is very overwhelming and stuffy and some of the garments are really oppressively heavy when I have to put them on and wear them so I try to make sure to leave as much clothing on the hangers when I can.  Like now, sharing with all you fine people. I'm taking care of myself as best I can and have a support system of friends and all....but this is still Really Hard.  And it's gonna keep being Really Hard for the foreseeable future.