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!

Day +5 (Tuesday)

You may notice I've started to put the day of the week with the title.   This is mostly because I have no idea what day it is.  We live in a weird little time portal.  

Day 500 is what Andy said today.  And I agree.  Each day is 100 days.  Maybe 1000.  

But who can complain?  Andy is freaking ROCKING this Stem Cell Transplant.  

Appointment today was at 10.  We had the same nurse as yesterday - whom we love - but we kind of love them all.  Yesterday platelets were at 32 and Emma felt pretty confident we were going to need an infusion (ugh, I'm sorry, infusion, transfusion, I don't know what it's all called!) of platelets.  Usually once blood is drawn Andy keeps his phone in hand and refreshes MyChart, waiting for the lab results to come back.  We were hoping for another fast day! 

Emma came back rather quickly, that was fast - we didn't have labs back yet!

"They usually call me first when there are critical numbers..." she said.  We knew exactly what that meant.  Andy's platelets had dropped to 19.  20 is the threshold.  We were getting platelets.  Sigh.   But not surprising.  

His ANC is 0 and WBC at .1 (and...WHY can't I put him in a plastic bubble??)

Our doctor today was Aryel - the same from this weekend (another one we really like!)  She asked Andy ALL the questions.  He explained he was feeling well, was tired, but worked a full day and went to bed early, we wasn't starving, but was eating, and was drinking ok.  No fever, no cold symptoms.  No rash.  No night sweats.  No chills.  Not dizzy.  Not nauseous.  He had not fallen since the last time we had been at the hospital.  No unknown bruising.  No unexplained pain.  

She looked at us for a minute.  You're doing remarkable.   

So now we are bottomed out.  Could more fatigue come?  Sure.  It could.  Could the nausea increase once we stop the Zofran tomorrow?  Sure.  It could.  Could something change?  Andy is neutropenic - ANYTHING could change.  (Neutropenic is my fancy way of saying he has a low level of neutrophils, which is a fancy way of saying white blood cells.) (You know...with the amount of time I've spent at the hospital recently, I am basically a doctor!  Between this and google...watch out!)  Our Hg is holding strong at 13.9 and has slightly been increasing since hitting 12.8 on Day +1.  There is a good chance we will not need any blood transfusions during our process.  At this point. most of our numbers are where they are - most of them can't get any lower.  However, we are likely to need several more platelet transfusions.  

After being told we were boring, and receiving our platelets, we went home.  Platelets are dainty little cells, but they transfuse (infuse?) quickly!  We all agreed we like being boring and we are hopeful for many more boring days.  

Andy and I both got to work fully days again today!  

The kids spent the day with Grandma and Grandpa today.  As soon as they walked in the door, Oliver indicated he was going upstairs to shower and change.  Eleanor and I went for a walk with Debbie and then she came home and showered and changed.  Neither of them would go near Andy until they had.  Could there be other germs they picked up and are internal now?  Sure.  Of course.  But dang if they aren't doing what they can to keep their dad safe.  We are just crazy proud of them!

Another quiet night.  Oliver is working on the Lego set I got Andy.  Andy's working on swim club enrollments (if you don't know, Andy is our swim club treasurer).  Eleanor is doing homework (you know, because everyone does homework on Spring Break).  And I'll work on my cross-stitch soon.  

Shhhhh.  Sit in this moment for just a moment.  Close your eyes and sit in this moment.  Do you feel that?  It feels....sort of normal.  I refuse to let myself exhale yet.  We are ONLY Day +5 and need to get through at least Day +14 until we can even start to say things like successful recovery.  But the panic of chemo.  The panic of cell transfusion.  It's over.  Clearly his chemo is working because his numbers tanked.  Now we just need to see those numbers start to recover around Day 9 and we'll be able to check the next box.  

This is all because of Andy.  But think of the role you are playing.  Your prayers.  Your positive energy.  Your encouragement.  It keeps us going.   It keeps us positive.  And because of that - It WILL make this successful.  And I refuse to believe anything else!

PS - for the record - blood and platelets are received via TRANSfusion. Fluids would be received via INfusion...I'm not going back to change anything - but now we all know for next time!  😉)

Day +4 (Monday)

 Day +4

Andy slept well last night and woke up hungry - YAY! He was quick to eat breakfast before his appetite changed! 

We got to the hospital and went through our normal routine - find room, get weight, get labs, go through all the questions.   

Andy's weight is starting to take a dip down.  While I'm slightly jealous of this, given ALL the desserts in our house that I'm eating, we need to be careful and ensure that Andy is eating the calories his body needs to keep fighting!  

Blood pressure looks really good - which is actually a first!  

Andy's WBC have nearly tanked.  He was at 5.1 yesterday and is now at .9 in a short 24 hours.  .9.  In November when we were this low Andy and I left the hospital in tears because we were denied treatment.  And now we are rather celebrating.  The chemo is doing what it's supposed to do.  It's killing potentially cancerous cells to make room for all the fresh new cells we put in Andy's body!  Platelets are also quickly approaching the transfusion level - likely Tuesday or Wednesday.  

However, I am not even MORE HYPER vigilant.  Andy, essentially, has NO immune system.  He has zero ability to fight anything he comes across.  Ugh.  

We were excited to meet with his primary oncologist, Dr. A, today.  He's very pleased with Andy's progress.  He explained we are JUST ABOUT on the floor.  Once we get to the floor, we'll hang out there for a few days and then those new cells should lock in.  And they'll start duplicating as quickly as they depleted, making Andy start to feel better quickly!  We look forward to that day! :-)  

Dr. A asked us how outpatient is going and how we feel about driving to the hospital every. day.  Are you kidding?  I LOVE going to the hospital - we actually get to leave our house! Ha!  But seriously, we said things are going well and Andy is really enjoying being able to sleep in his own bed.  We are diligent with taking his temperature every few hours when we are at home - we make sure he drinks enough water - we're doing our best to keep him health and at home. We are pretty sure Dr. A was suggesting that at any time we want to switch to inpatient, we can.  Well.  We don't.  We're going to do this.  

And then - we got to leave.  We were seriously gone 1.5 hours!  Yippie!  Andy and I both got to work full days.  And he did work a full day - no naps even!

The kiddos are back home from a few nights at my parents, and while I'm nervous that it means new germs, they both came in, changed immediately, washed hands, and brought all their stuff upstairs.  They are doing a great job trying to keep their dad healthy and safe too!  We all want to keep him here!

Andy ate a great dinner and now we are all sitting on the couch already.  Clearly, I don't love that Andy is going through this, but if I'm going to find a silver lining, I'll say it's that both kiddos are in the same room, watching the same show as us.  💖

Day +3 Sunday

Andy and I have been together for over 13 years and I'm fairly confident this is the first time in the history of our relationship that he has gone to bed before me.   

This, on top of nearly another 2.5 hour nap.  It's safe to say that Andy is feeling extremely tired.  But at least it's just tired at this point and he's not feeling ill. 

Our appointment was this morning again at 7:30, we got our labs and met with our nurse.  Andy's numbers are starting to do what they are supposed to do.  His WBC was 15.9 yesterday and today they were at 6.1.  Platelets are dropping too, although, not as steep of a drop from Friday to Saturday (118 - 77 - 50).  Once the platelets drop to 20, he'll need a transfusion, but we've been told to expect that, so we're just waiting.  Hg are holding steady and Potassium and Magnesium are also holding steady.  His Kidney function is doing well also.  Our PA was so satisfied with Andy's number that we didn't need to wait around for the Attending, and we were discharged about 2 hours after we got to the hospital.  

It was a quiet day at home for us - Andy napped, I got some laundry and sanitizing done.  All the St. Patrick's Day decorations are put away and we are fully decorated for Easter!  I got some crafting done and we are well stocked with food for the week thanks to everyone's abundant generosity.  I got a surprise visit from my sister and we were able to sneak a quick walk in before it started raining - sleeting - snowing - slushing...or whatever it was doing.  And actually that's a lie - because we got that wonderful mixture on us for the last part of our walk!  Regardless, it was just what I needed!  

We ate some dinner - some of us more than others.  Andy's appetite is starting to slow down and nothing really sounds good to him.  We started a new show on Hulu and facetimed with the kids.  It's amazing how quiet the house is without them here.  We're all excited for hugs tomorrow!   

Tomorrow's appointment is at 10:00.  Tomorrow we begin Day 4.  I told Andy that, and we both agreed, Day 3 feels like day 103 and we're just getting started!  

Everyone has been SO amazing with thoughts, and prayers, and messages of encouragement.  Stick with us a little longer!  We are so grateful and it's helping beyond belief when days are a little cloudy!

Day +2

 It's Saturday.  A day to sleep.  But. Our appointment was at 7:30 AM today!

It's amazing how different the Froedtert City is on Saturday compared to a weekday.  We got checked in and ushered to our room.  We were just in one of the bay rooms (with a curtain door) and not an actual room, which made us feel very hopeful for how long our appointment was going to be!  

SPRING BREAK 2025!

When we met with our nurse, she explained Andy was the "most stable" of the patients at the day hospital, so that's how we got the bay.  She didn't expect Andy to need any additional infusions, so we should be in and out quickly.  

We got Andy's weight and vitals.  They take his weight every day to ensure he's not unnecessarily retaining fluid.  And they drew his labs.  

Labs don't come back as quickly as they do on the weekdays, because everything has to go to Central Labs.  Slowly everything started to come back...We only got one surprise and that is that his WBC actually spiked because of the Neulasta shot he received yesterday.  The Neulasta shot needs to be received 24 hours after the transfusion to help his current bone marrow accept the new stem cells.  But this is seriously the cap for both WBC and ANC (15.9 and 15.58 respectively).  

We met with one of our PA who was really happy with our current numbers and results.  She confirmed that Andy wouldn't need anything additional transfusions and all we needed to do was wait for the attending to see Andy and we could head home.  

That was at 8:30 AM.  

By 10:00 AM, the attending still had not come down to see us.  Andy and I were trying to do laps around our little bay room.  Finally, the PA came back - the Attending got tied up with the inpatient side and didn't know when he would get to us - as such, she was discharging us to go home.  Hip Hip - Hooray!  

Shortly after we got home, my parents came by to pick up the kids who are spending a few nights with them.  We also had a visit from a dear friend that drove all the way from Madison just to deliver us some dinner (and amazing fresh fruit and dessert!!)   Andy's dad and step-mom stopped by shortly after that to say hi.  And in between all that - Andy unloaded our dishwasher.  You know.  No big deal...not like he didn't JUST have a SCT!

And then our house was quiet.  We ate some lunch and Andy decided to take a rest.  While he laid down I did a quick vacuum of our lower level (Andy shouldn't be in the same room I vacuum for 45 minutes after I vacuum). And then I sat down real quick to finish my cross stitch.  And Andy slept for 2.5 hours and I watched a movie and finished said cross stitch.  Yay for relaxing days!!  

We ordered some pizza for dinner.  Played some more dominos.  Faced Timed the kids.  

Day +2 was a good day - Ready for Day +3!

Day +1

We aren't even a quarter way through our 'recovery' and I'm already slacking at my job of updating.  I'll just leave this post designated to Friday, March 21 - Day +1. 

We had our first post-transfusion follow up starting at 7:30 in the morning.  We anticipated the day being quick as most of Andy's numbers should be relatively stable yet...however, we quickly learned, really nothing is 'quick', although we were only in the hospital for about 2 hours.  

We had the same nurse from our infusion - whose name is BECKY!  Andy's calcium numbers are starting to drop a little, so he started his supplement back and we learned that IVF on the white board has nothing to do with reproduction, but for IV FLUIDS.  That explains a lot.  

We went over all the basic questions, confirmed Andy is still feeling great, heard again, that he's going to feel like garbage soon and by 9:30 we were discharged and back home.  

We spent the rest of the day being two normal adults, working in our respective home offices!

We let the kids go to the annual swim banquet - we figured, after being in school all day, what difference did it make if they spent the night hanging out with their peers?  I picked up fish fries from Sendiks for Andy and I and we played a lot of Dominos.  I mean, technically, that's a really great night for the Bachs.  

We all felt a little sad knowing that today is the day we were supposed to be packing up and heading to Orange Beach for a week of fun in the sun on Spring Break!  And we are allowing ourselves to feel sad about that, especially trying to help the kids understand that it's OK to be sad about a thing such as a vacation or time on the beach.  We know there is nothing we'd rather have in the entire world then having our dad better - think of the vacation we'll have when this is all over!  And how grand that we are now on Day +1 and not just planning and preparing for the SCT!