Monday, March 31 - Day +11

Really - It's day +3197811, but we can call it day +11.  

Day 11!  I need to help provide fingers for counting!

First of all - Never complain about driving to the Day Clinic every day...because you'll spike a fever and get admitted. 

Second of all - I am a navigational GOD!  I made it to Froedtert today, determined which structure I should park in, AND got myself to Andy's room.  All. By. Myself. 

Third of all - if you ever see me trying to sell my children on the black market - please remind me how much the rallied during this time.  My goodness, I hate to brag, but these kids are just super stars! (And, actually, I don't hate to brag...kiddos deserve it!)  Last night I walked into the house, beat and exhausted.  Eleanor had driven Oliver to Target to get hot dogs, when the realized the also needed - very specifically - Neapolitan ice cream sandwiches, so the drove to Sendiks and also picked up Debbie some ice cream! My kitchen was spotless, the leftover mac and cheese was in the fridge waiting for me AND, I learned this morning, they also had APPLE with their dinner.  Oh - and did I mention that Eleanor got Oliver to take a shower?  Everyone wants to help SO BAD and I love that.  But this night.  They didn't know it.  But they needed it.  

Transitioning from outpatient to inpatient is hard.  It's like...it's like going to a wedding and doing one of those group dances, like the electric slide, or the cha-cha slide, but it's just a little different then what you know.  I. Want. My. Nurses. Back!!!  Andy got labs taken at midnight.  Uh-huh.  You heard that.  Mid.night.  And then we read the labs when I got to the hospital via MyChart.  No one came in to really give them to us.  Write them on a board. Or discuss them with us.  

A nurse came in a few times to take vitals.  One time she said, 'Do you have any questions'  and Andy was like, 'yeah!  what's the plan?'  and she was like - this is it.  Ehrm.  OK?

The two times they took Andy's temp last night, it was going up, so the nurse kept coming back every hour.  I left my yellow notebook with Andy, so I don't remember the official temps, but the third time she came in was back to under 100...so, she stopped bothering him.  His temp hovered around 99.2 today.    

Why is this a thing??  No wonder no one can sleep in a hospital!!

We knew Dr. Akhtar was off today, but eventually, the same doctor we saw on Sunday at the day clinic and the same doctor that admitted us that night came in to see us (But let's be clear - this was mid afternoon).  

Cleary Andy is in engraftment - his numbers are starting to increase, which is great.  He said 'it may have been overkill' to admit him, and maybe another doctor would have done it different, but he believes in being abundantly cautious (OK, I can't argue this point...I LOVE caution!)  He said it was a very good thing that Andy didn't have a fever overnight and nothing since.  He said it's typical to give the antibiotic 'almost preventative' while we wait to see if any of the bacterial test results come back positive.  He's hoping our stay is short lived and we can finish things at home. 

We then had a visit from the social worker...I'm pretty sure she just wanted to make sure Andy was OK going home with me and I was OK taking Andy home.  We both agreed that would do.  We were also referred to the "Child Life Specialist"...long story short (Actually short this time) The kids CAN come visit Andy.   We were under the impression they would not be able to - but so long as they are with an adult, the minor children can visit!  YA HOO!!!!!  I really think this news gave Andy new life and let me tell you how the kids responded when I told them! We wanted the kids to have a semi-routine evening, so they both went to swim tonight, but I will bring them up to the hospital tomorrow after school!

Andy and I then took a walk around his floor, which was probably more movement then he had had in a few days, we played a game of Five Crowns and then decided I should probably head back home to the kiddos.  

This is more energy and life out of Andy then I have seen in a few days!  He was exhausted when I left and I sure hope he got some sleep before they started his next round of antibiotics.  I don't want to call or text him because I want him to be sleeping!

When I got home I did some vacuuming while he was out of the house and mild disinfecting.  I want him home soon and I don't want to have to be worried the house has gone to heck while he was gone.  But I'm trying not to be too hopeful, so I have also done laundry so I can bring him some of his favorite things tomorrow. 

So.  This is where we are at.  Oh.  And some day...remind me how we should talk about the terrifying and overwhelming experience of finding my way to the Froedtert cafeteria, trying to pick out lunch, basically being the only person not in scrubs, and then finding my way back.  Does anyone have scrubs I could borrow for tomorrow??

Well.  Wow.

Sunday, March 31 Day +10 - Part II

I wanted to get the other post out there, because we have a part II.  

Long story short (because you KNOW this will be long...) Andy is in the hospital.  We tried our darndest to keep him outpatient.  And we lost.  I don't know what that all means.  I left him there at around 8:30 PM last night and I'll get back up there after I get Oliver on the bus this morning.  

Long Story Long - 

Andy woke up from his nap and after about 30-45 minutes, we took his temperature.  It was 100.4.  My stomach dropped, but we assumed it was just the thermometer.  So I went up to grab another one. 100.2.  Shit.  What about a different one.  100.3.  OK.  One more.  97.2.  (Clearly, we need to throw away that thermometer).  

We called the nurse line on his bracelet.  The one we swore we would call if anything...such as this...would happen.  Three nurses later, they told us to go to the 'Main Entrance' of Froedtert and someone from transport would meet us there.  

OK - can I digress for a minute? (Yes.  My blog, I make the rules).  Froedtert is massive.  And it's all under construction.  Finding the main entrance in the dark, rain was terrible.  And the main entrance...NOT like the main entrance of the cancer center.  And it's a tad chaotic.  And I wanted my Cancer Center people.  

Turns out we only went to the main entrance because everything else was closed - they weaved and wined us around the hospital and we ended back in the Cancer Center.  His temp was 99.2.  DDDDDDAAAANG IT!  We shouldn't have come in (I KNOW that's not the right answer, but it's how I felt).  They started running all the tests - I should clarify - they ran an infectious disease panel. At first, we were under the impression that Andy would be able to go home while we wait for the tests to come back.  How young and naive we were.  

All. The. Tests.

I stole his bed when he went for x-rays.  They tried putting me in the crappy seat!

And yet...not that Naive.  Because as Andy was getting 'checked into' his room, I navigated my way back to the car to get Andy's bag he quickly packed before coming to the hospital.  

I don't know what I feel.  I'm not terrified because we've been told a million times he could spike a fever and would need to get admitted - no questions asked.  There are things they can do for him.  

I think I'm sad.  I'm mad.  I'm frustrated.  I'm disappointed.  He wanted to be home.  I wanted him to be home.  I've disinfected every part of this house for more than two weeks.  I've washed sheets.  I've washed towels.  He's slept.  He's drank.  He's ate.  We've washed hands until they are dry and cracked.  We feel SO defeated.  

Leaving the hospital last night was not nearly as hard as leaving the hospital on October 30, but it was pretty dang tough.  That guy has fought SO hard.  And done SO much.  And given up SO much.  And this is the reward?  This is the thanks?  The ONE thing he asked for during this process.  

So.  Now what?  I don't really know the answer to that question.  I guess for now I get Oliver on the bus.  Pack up the things Andy asked for. And head up to the hospital.  Just like I did on October 31.  And we figure out what our next steps are.  

He has the best attitude.  Always.

Sunday, March 30 - Day +10 - Part I

Just when we think the days can't get any longer, enter Day +10.  

Our appointment today was at 7:30.  Gotta love getting the first spot in the parking structure!  

Everything went as usual - weight, vitals, labs.  Weight is maintaining, but Andy's heartrate was 102.  Our nurse, Emma, thought it best to order some fluids right away.  Andy's GI track has been mostly behaving, but has still given him a little trouble, so may as well have some fluids.  Plus, he slept a lot yesterday, and maybe didn't drink as much as he should have.  

ALSO - side note - and maybe I said this already, maybe not.  Chemo has ruined ice cream and Gatorade for Andy.  Every time he thinks of those two things, he gets nauseous, remembering the day he had to force himself to keep his mouth freezing cold (although, it seems to have worked and we really seem to have avoided any sort of mouth sores!)  

His temperature was 98.4 and it always seems to be higher at the hospital then at home.  We all knew we were going to get platelets - They couldn't jump that much, given their track record; however, we still expected a relatively quick day.  

Labs started coming back - Potassium, Magnesium and Creatinine were all holding steady. 

WBC - .4.  .4 BABY!!!  We are engrafting!! We were so excited...but holy shit if we aren't so tired, we barely celebrated. 

Platelets are doing their thing too.  We were at 14 today, but that's up since yesterday's 11!  

AND we had measurable ANC - .31, up considerably from the last several days at 0.  

Andy's temperature kept increasing while we were at the hospital, getting to 99.8 at one point, but hovering around 99 the entire time.  Emma wants us to keep a close eye on that temp.  Remember when I said we didn't need to 'worry' about Engraftment Syndrome.  Well, as much as we don't need to worry about it, we still need to be very aware of it.  Engraftment Syndrome will be Andy's body's natural immune response to the rapid increase of his immune system and could create an allergic reaction of sorts.  There is nothing we can do to prevent it or control it - unlike my obsession with disinfecting my house and my people that live here.  And it's completely manageable - from the hospital - which is like the #1 place we are trying to avoid.  

When we got home, Andy's temperature was around 98, but I'm hypersensitive right now and am resisting the temptation to go into the room where he's sleeping and take his temperature.  😬  We've come this far - I don't want the one thing we've been waiting for (engraftment) to come with a negative!

So anyway - fluids and platelets and then we waited.  For over an hour we waited to see a doctor.  We were going crazy.  Literally pacing our little room.  FINALLY around 11 the doctor came to see us.   Listened to Andy's lungs, looked at his skin, poked his tummy, asked two questions, and left.  Ugh.  That's the same thing everyone else has done - why did we need to stay for that?

So now we are tired and frustrated!  But we got to go home.  Andy immediately went up to bed.  These trips to the hospital just wipe him out.  He's been sleeping for about 3 hours now - or at least, he's been upstairs in bed for that time.  

Saturday, March 29 - Day +9

Today when we got home from the hospital Oliver went to Grandma's to bake cookies with her and Eleanor was with friends. Andy went to take a nap and before I cleaned I sat on the couch for a little.   At that time I was going to write our update, but I just needed a break from thinking about SCT and Cancer.  And now I almost didn't write our update!  Man I would have been upset.  

So - technically.  Today was a phenomenal day.  

But we are still living in groundhog's day.  And Andy is exhausted.  He's doing exactly what he's supposed to be doing.  But not at all what he wants to be doing.  Andy is active.  Andy is energetic.  Andy does a TON around the house.  Sure, he knows he's fighting cancer.  He's building an entire new immune system.  But that's a lot to wrap your head around.  I can only imagine how exhausted he really is that he is actually allowing himself to sleep!

We got to the hospital and did all the things we normally do.  And - like our new normal - our nurse came in with our lab results before Andy got them on MyChart.  ugh.  we needed platelets AGAIN.  

BUT!

Guess what? Guess what?  Guess what?????

Andy's WBC were MEASURABLE!  .1

Our weekend doctor said she likes to see two days of incline before she calls it a trend, but it's really really possible we are starting official engraftment!  

AND - Our platelets were still sub 20, but they were up from yesterday.  We needed another transfusion and could likely need one tomorrow, but we really really are hoping for a new week next week!  

The other thing about weekends at Froedtert:

Parking = AMAZING. 

Labs = Slllllllloooooooowwwww.  Everything is slow.  It took forever for us to get the platelets once we got our numbers back.  So.  we were at the hospital for several hours today.  

By the time we got home, Andy was exhausted.  He took a much needed nap and as I was 'home alone', I did some cross-stitching and crafting before I did my cleaning.  

I also did something HUGE....I left the house and went somewhere other than Froedtert!  I met my sister at Mass.  We sat in the balcony.  I wore a mask.  And I came into contact with NO ONE.  I changed as soon as I got home.  It was amazing and I needed it so much.  Also...I kind of like the balcony now at HA...such a different perspective!

So, my prayer warriors...are we turning a corner?!  Our appointment tomorrow is at 7:30 (WHY so early on the weekends?)...I can't wait to provide an update!!

Day +9

Friday, March 28 - Day +8

Thanks for all your text messages💖  We really are doing OK.  But this experience is unlike anything I can ever put in words.  To be SO happy with how things are going.  But SO tired and over it.  

I slept terribly last night.  However, I'm still in a different headspace today then yesterday.  I have to thank this AMAZING weather we are having.  It's like my two favorite weather days in one - strong thunderstorms this morning with amazing lightening and thunder (and hail!) (despite that it woke my family up at 4:30) and then amazing an abundant sunshine and HEAT.  

Day +8 and we are losing our minds!

Our appointment went well.  We had Nurse Emma again and we placed some wagers on what we thought Andy's platelets were going to be.  

Dana said 10 (but really wanted 11)

Andy said 17

Emma said 15

Unfortunately...I won (ish).  We were at 7.  Gosh darn it!  We were so frustrated.  Three days of transfusions and the numbers still went DOWN!  Emma was 100% unphased.  Telling us (again) how fragile platelets are and how we could still receive another transfusion tomorrow.  It has always been our MO to respond the way the nurses do.  So.  If Emma was OK with dropping platelets...then so are we.  

Andy got a BIG OL BAG of platelets today.  Like both nurses commented on how big the bag was.  C'mon little platelets...work your magic!  

Everything else was relative the same.  Hg dropped slightly, but not big.  WBC and ANC still at 0.  Now we'll start betting on those...when will we see them start to increase?  (Oh!  We SHOULD start a pool for this - like those pools you start when someone is having a baby - when will the WBC start to increase and what will be the first number?  I say Monday at .4 (You guys...I have NO idea what I'm talking about...))

Our appointment is tomorrow at 9 - which is nice.  At least it's not 7:30 for a weekend. 

This afternoon was nice.  Andy slept.  I was off.  I did some cleaning.  Did some laundry. And mustered up the energy to run on this beautiful day.  We even sat outside for a little bit, enjoying this amazing sun.  

Thursday, March 27 - Day +7

 It's been one week 🎵 (Barenaked Ladies - IYKYK).

Today was a rough day.  Physically, Andy is doing amazing.  Mentally, we are hitting a wall.   And maybe me more than him.  

It's like the movie groundhog day.  Each day is the same.  Each day is exhausting.  I cried more times then I can count.  And then I'd look at Andy, who is a freaking rock star and hasn't complained once, and I'd cry even harder.  We both feel the monotony of driving to the hospital every day.  Waiting. Every day.  Uncertainty. Every day.  Worry.  Every day.  Relief.  Every day.  It's not hard.  But it's exhausting.  

I made a big decision today to start taking 1/2 days at work.  My job has been incredibly gracious and incredibly flexible, but trying to ensure I'm working full-time, while cleaning the house, doing the laundry, and coordinating kid schedules has pushed me to the edge.  And honestly, after just one day of a 1/2 day, I feel better.  This afternoon I focused on disinfecting the first floor, washing the sheets, I got to take a walk in the sun with Oliver, Eleanor, and Debbie.  I played a game with Oliver and we all ate dinner as a family.  Andy is currently putting away our dinner and doing the dishes.  It's hard to let him do these things.  But it's hard for him to let me do most everything else.  So I'm sitting in here, typing this update, and having a glass of wine.  He needs to feel normal too.  

I'm just being real.  I'm just being raw.   I sometimes feel a bit more guarded, narrating this journey, knowing 16 year old eyes (Hi Eleanor) is probably reading.  But we are all real and raw with each other, so I may as well document it for Dana of 2042 to reflect on.  Just as I sometimes reflect back on the blog of 2010/ 2011 (yeeeesh.  That was RAW!)

Medically, Andy is doing amazing.  His appointment today went well.  His platelets dropped - again.  Those dang things are more fragile then I ever knew.  So we had another transfusion.   The lab wasn't as quick to release this time, so there was waiting.  (This was my deciding factor to start taking 1/2 days too - I'm so tired of trying to work on the slow Froedtert internet!)  Andy slept.  

He lost some more weight, but BP and heart rate look good.  We avoided another day of fluids.  Could we possibly avoid fluids this entire time?  Looks like we are going to avoid a blood transfusion.  Hg hanging strong. We felt frustrated needing platelets, but our nurse said probably another round or two.  

There is a potential we will start to see Andy's numbers start to trend upward toward the end of this weekend!  I cannot tell you what that is going to feel like.  

Of course, then we need to worry ("worry") about Engraftment Syndrome.  Doesn't is sound TERRIBLE?!  It's not.  It's just a period when Andy's new cells start to take over his body, his WBC / ANC starts to rebound and he could develop a fever, rash, diarrhea...basically all the things we are currently watching for, but the result of something different.  Treatable.  Manageable.  Just one more thing.  Well. We'll worry about that tomorrow. 

Tonight.  We all need good sleep.  Tomorrow.  We'll do it again. And we'll be grateful for it. 

Prayer warriors.  I'm asking for you yet again.  I swear we will pay this forward.  But just a little longer, please.  We see a light at the end of our tunnel.  It's getting a tad brighter, but we are still laying on the floor and you have absolutely no idea how much your strength and encouragement keep us going.  Each of you are our little God Winks, keeping us going.  Keeping us positive.  

OH!  But don't worry...at least today I remembered my notebook! 😏💖

Day +6 (Wednesday)

 Ugh - Even with the day of the week as the title, I have no idea what day it is!  

Today was catastrophic.  OK, not really, but stick with me.  

When we got to the hospital I realized I forgot my yellow notebook.  I've taken this notebook with me to every appointment since Nov 1.  2 days after our original diagnosis.  2 days after our original diagnosis when I was writing things down like - low blood counts. Risk of infection. Risk of bleeding.  Watch for signs of bleeding/infections (seems intuitive...right?)  

In this notebook I have every lab result, notes from every appointment, questions for future appointments, medications, reasons for medications, and research on just what the heck is multiple myeloma.  

I felt lost without my notebook.  Spoiler alert - we all survived.  

ANYWAY.  Andy didn't sleep amazing last night. No reason, just couldn't stay sleeping.  

We got to our room, weight is maintaining (he ate well yesterday!), temp and BP doing well.  We had a new nurse today - spoiler alert - she was amazing too - and we got to see Aryel - who, again, is just amazed at Andy's reaction to the Stem Cell Transplant! (yay yay yay yay!!!)

We were well prepared for a short, quick visit.  

Until we got our platelet count - down again!  13 from 19 - even with yesterday's TRANSfusion!  So, we both got out our computers and started working, knowing platelets were coming.  

Hg dipped slightly, so curious to see what tomorrow brings.  And WBC are officially 'immeasurable'. Cool.  

Really for the most part the day was still pretty anti-climatic.  We got home and Andy went up to take a nap (about 3 hours off and on for him) and I got back to work.  After working for the day I tried disinfecting all high touch surfaces, our floors, changed our sheets, and changed out all towels.  I'll try to do this every day until we see some progress on Andy's WBC numbers and then move to every other day. 

The kids spent the day with Grandma and Grandpa at the museum today and once again - both came home and wouldn't go near Andy.  They both showered, changed into their house clothes, and then were eager to tell us about their day.  

Another quiet night at the Bach house - all of us on the couch, watching a movie. Early to bed for Andy and hopeful for a restful night!