Monday, April 7, 2025

Monday, April 7 - Day +18

 Today was a good, and rather surprising day!

Our appointment was at 7:15, which is only 15 minutes earlier than some of our previous appointments, but it may as well have been 15 hours earlier!  But, we made it without issue.  

We've gotten a lot of questions regarding what it means to transfer from Day Hospital to Grace Clinic, especially given that they are both in the same building, but one is on floor 3 and one is on floor 4.  

At Day Hospital, we were buzzed back to our room each day, no waiting in the waiting area.  Our room was a hospital room, complete with a bed, a comfy chair, our own bathroom, a TV, all the medical related items such as the IV poles and vital machines, and a rolly cart with all our own sterile medical supplies.  It was a hospital room that we just visited...during the day.  But it was intended for us to spend significant time in as we had blood drawn, waited for lab results, and received transfusions.  We are SO blessed that Andy's time at Day Hospital was rather uneventful.  Platelet transfusions, which are so common during a SCT, only take about 45 minutes.  A blood transfusion, which is also common, but not needed for us, can take 2 - 3 hours.  Hence, the bed for Andy and TVs.  And comfy chair for me.  

At Grace Clinic, imagine a room like you would be in if you went to Urgent Care.  There are two not comfy chairs, the medical 'table', and the cabinet with all the unknown supplies (because...honestly, have you ever seen a doctor or nurse open one of those cabinets?)  

Clinic 'Views'

We stopped at Floor 2 to get our labs drawn (After we went to floor 4 because we didn't know we needed to go to Floor 2 first - rookies!) and then went to floor 4 to wait to meet with our doctor.  Or, A doctor. 

Clinic VIEWS!  Love our little sky line!

Andy's weight dropped .6...He's going to bed before dessert these days...I'll need to keep him up 15 minutes later to start getting our nightly dose of dessert!  But his BP and Temp look great.  

All labs are doing what they are supposed to be doing - ANC dipping from 2.88 to 1.86 (ew.  I HATE that) but WBC increasing from 3.6 to 3.8.  Platelets doing their thing again - 56 to 113.  SO close to not worrying about internal bleeding, bumps, bruises.  For being fragile little things, they're gaining strength!  Potassium is up from 3.5 to 4.0, but I still made some Avocado cookies today (um, don't judge, they are delicious and a great secret source of K). OH - And Hg climbed back to 11.6 from 11.1.  

We met with our nurse - Sally.  She said things like 'Amazing' and 'Great Job' and that she spoke with Dr. Akhtar and he is 'pretty pleased'.   Andy continues to not have any 'side effects' except for the fatigue.  He mentioned his daytime naps have significantly decreased, but he still needs them, along with an early bedtime.  She was thrilled with this and said it was not surprising because Andy is still very much in the recovery stage.  

She then dropped the bomb on us that we would NOT be seeing a doctor this time and that we weren't due back until NEXT MONDAY.  Mind.  Blown!! You're telling me we are just going to be little normal people from now until NEXT. MONDAY?!  But what if our numbers drop in the next week?  How will we know without daily, or at least every other day, labs?

Honestly, I think at this point we are just in so much need of a break, we didn't even dwell on those questions yet.  

We ALSO found out that Andy has an appointment on Wednesday to get his Trifusion Catheter taken out!  And this my friends, is what brought me to tears today.  He may be bald.  He may have lost some weight.  He may have some weird taste in his mouth from the chemo.  But that Trifusion Catheter.  That's the daily reminder of all this bullshit.  He can't shower without wrapping it with saran wrap and Tegaderm.  He can't sleep on his stomach.  We worry about the dog jumping on him.  We are all cautious when we hug him.  And every time he moves those little caps are the reminder that he is receiving daily blood draws and is in perpetual need of possibly needing a transfusion. And that mother f--- (OK, I won't say it, I know my mom is reading :-) )is coming out!!!!

The other thing this all means, as we start to readjust to normalcy, is I'm going to head back into the office.  I've been working from home for the last three weeks to 1) ensure I'm as quarantined as possible as Andy's primary care giver and 2) to be home should Andy need anything during the day - should he develop a fever, should he get light headed, should he get sick.  While all of these are still possibilities, they are not probabilities given this stage of the transplant and given his progress.  Going back to work terrifies me and exhausts me.  Here, I know Andy is safe.  Here, I can check on him if he's been sleeping too long.  Here, I can disinfect and do laundry during lunch.  Here I can be home at 5 to run the house, keep kids on schedule, and not go insane.  Some of that isn't needed anymore - the daily changing of sheets, towels, etc.  The daily disinfecting.  Some of that, Andy can help out with now that he doesn't sleep for 3 hours during the day.  And honestly, some of that, the kids will need to help with.  We've been an army for months now, we just need to learn some new roles.  And honestly, going back to work is one of the greatest steps toward 'normalcy'.  It just seems really big to wrap my head around right now.  And honestly, after 3 weeks of leggings, the thought of button pants makes me sad.  

OK - So here's what we are going to do - we are going to NOT provide an update tomorrow.  Because tomorrow, the kids will go to school.  I will go to the office.  Andy will work from home.  And we are going to take our first step back to real life (and NO ONE wants to read about our real life!), but, don't fear, I'll be sure to provide an update on Wednesday when that stupid port comes out!

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