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!

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!  

Day 0

Today was the day.  We've actually felt 'excited' about today and our nurse was ready to celebrate with us!  We walked into our room and everything was listed out on the board, exactly as it was going to happen.  WOW.  And would you believe...I cannot remember her name!  I feel terrible, because she was great - Andy thinks it was Rebecca.  I think it was Beth.  Doh.  

First we had labs.  His WBC continue to increase because of the steroid...increasing only to plummet later.  ANC therefore is also increasing.  Platelets saw a slight dip and the Hg also saw a slight dip.  Rebecca (Andy just confirmed through MyChart that was her name :-) ) was a little more in the camp that Andy would likely need a blood transfusion at some point, regardless of how high his Hg currently is.  Pot, Mag, and Cr all hanging where they should be.  I loved that right on our board Rebecca had written the threshold of numbers for needing any additional transfusions!

Rebecca indicated that she had placed the call to the CPL and our cells were on their way (that's Cell Processing Lab 😏) and would need to thaw for about 90 minutes.  

Rebecca also warned Andy that the DMSO used to preserve the cells can make him smell like garlic or sweet corn for about 24 - 48 hours post transplant.  She said the cells were getting a good bath before the transfusion, but there was only so much washing they could do without running the quality of the cells.  Spoiler - You guys.  He REALLY smells like sweet corn...like cream corn actually.  And HE can't smell it...but we can.  It's SO strange.  Obviously he hates this, but seriously, it could be SO much worse.  

Rebecca indicated Andy's cell bag was 180 mL which would take about 30-40 minutes for infusion.  You know...a life saving treatment...all completed in 30 - 40 minutes....

We mentioned Andy's hiccups....yes, that's right, hiccups.  He is having terrible hiccups as a result of the Dex. Like, up all night hiccups.  When Dr. A (THE Dr. A) came to see us, he prescribed Andy something he could take tonight if the hiccups keep him up.  THANK GOODNESS.  Nothing good happens when you are up all night. An easy side effect of treatment...but super irritating none the less.  

We talked about Andy's prescriptions and what he can take and what he can't take for pain.  And we talked about how Andy cannot floss because it could cause his gums to bleed which could cause infection.  SERIOUSLY, we learn something new each day!  No probiotics.  No prebiotics.  It's all bacteria Andy's system can't tolerate right now, but yogurt is OK. (Do you care about any of this information?  No.  Of course you don't!  But I told you, the blog is for me...and some day, years and years and years from now, this will all be fascinating to look back on!)

We learned our appointment for tomorrow is at 7:30 and we could anticipate that one to be rather short.  And actually through the weekend should be rather short too. 

And then our cells arrived!  I kinda feel like they should have arrived on a little golden pillow.  In fact, I'm actually surprised they didn't because everyone was real excited when they came in and Rebecca said - do you want to take a picture with them?  Ummmm, yeah I do!

So they got Andy all hooked up, started the infusion and started the process of taking vitals every 15 minutes.  Rebecca was in the room with us the entire time...just in case...and talking with her made time go by very fast.  Because all of a sudden.  It was over!  

We then had a two hour observation period.  I ran down to the cafeteria to get us something to eat and among eating, watching March Madness (too bad about Louisville!), and working, two hours flew by!  And then Rebecca came in and said - OK, that's it.  See you tomorrow.  

Same feeling I had when they discharged me from the hospital with Eleanor and then with Oliver.  Like - what?  We just go home now?  Rebecca read our expression right away and acknowledged how weird it is to receive life saving treatment (that phrase again!!) and just go home! 

Andy and I got in the elevator to leave and I was JUST about to take our picture and two women joined us.  I thought it'd be weird to take a picture, so I didn't.  

And then we drove home.  And now we're going to eat dinner.  And then we're going to watch some TV.   And inside Andy's body, there is one hell of a show going on!  

So.  Day 0.  We are OFFICIALLY on our way to remission now.   

Day -1

 Sometimes I can't remember what I have explained and what is just swimming around in my head! 

Andy had a relatively restful evening.  He thought he might be feeling a little nauseous this morning but turns out he was just hungry!  

Andy's actual day of transfusion of stem cells back into his body is Day 0.  So yesterday, Chemo Day, was Day -2.  Today was Day -1.  

And Day -1 was every uneventful.  Getting to the hospital was more eventful then actually being at the hospital. We ran into unexpected traffic because of a broken-down semi in the middle lane of the express way combined with lane closures for construction.  We were running a little late, so I dropped Andy off at the hospital while I drove around the structure trying to find a parking spot. 

When I got into the room, our day nurse was already in there starting to take Andy's vitals and daily lab draw.  She said based on Andy's numbers from yesterday, she didn't expect much to happen today and boy was she right.  

We saw a spike in the ANC and WBC as a result of the steroid from yesterday.  Everything else was relatively stable.  

Andy received a dose of Dex and Zofran (which will be given for the next few days to stay on top of the nausea from the Melphalan).  

Each day we will meet with whichever doctor is on rotation that day as well - today was Dr. A...but not the same Dr. A as our Dr. A.  She was great, but given how unexciting we were, she basically just sat and talked to us, reviewing what we might expect over the next few days and answered any questions we might have.  A few things we took away from today.  

Friday we will receive an injection of neulasta injection that will help Andy's WBC recover quicker.

Day 3 to 4 is when we will really see Andy's numbers tank - like, some of them will bottom out at 0.  

Day 4 to 7 he is likely to feel pretty crummy.   They describe it as a really bad flu - and just feeling really tired.  

Daya 9 - 12 we will see Andy's numbers start to come back as his cells fully become integrated into his system.  

Hg is not as 'fragile' as some of the other cells and likely won't decline as rapidly.  In fact, with his Hg at 14, they don't expect him to receive any blood transfusions.  But if it drops below 8, we'll get blood.  

Most patients receive platelet transfusions - these are very fragile cells.  Once his numbers drop below 20, he'll receive platelets.  

Once his ANC drops below 1 he'll receive medications to boost that number.  

The Potassium and Magnesium will be watched as part of his electrolytes.  Those numbers are 3.5 and 1.6 respectively.  Also very common for patients to receive Potassium and Magnesium supplements during this process. 

During tomorrow's transfusion Andy's vitals will be taken every 15 minutes and after tomorrow we need to take Andy's temperature every 4 hours while awake.  If it starts to increase, we need to call the number on his bracelet.  TECHNICALLY, our threshold is 100.4, but you better believe that as it starts to creep to 100, I'll be calling.  

IF Andy's temperature reaches 100.4, he'll get admitted.  At that time - WE DON'T PANIC!  He is getting admitted so they can monitor him and give him anything he needs to fight a potential infection.  Fever does not necessarily mean infection - his body is going through a lot right now.  That is why they want to watch him.  

If he gets admitted, it doesn't mean he needs to stay in the hospital until his numbers start to increase.  Just until he starts to stabilize more.  

So those are all my random facts for the day.  So much information and each day and each appointment we are learning more.  We were home by 11:30 and spent the rest of the afternoon working.  

Again, we know we have long days ahead.  But each day, each moment, we count our blessings and thank God that the road to get to this point has been smooth and unadventurous.  We just hope the highs stay high and the lows are manageable.  It's hard to focus right now.  It's hard to do anything that relates to life outside of our SCT bubble.  I can only keep repeating how special and appreciated all your texts, letters, meals, snacks, and well wishes are!

Chemo Day!

 

It's literally how we felt!  Today is the day we have been waiting for for a long time!  

Long story short - Andy's a rockstar, chemo went amazing, he's doing amazing, let's go!

Long Story Long.

We got to the hospital and walked up to the Day Center and were immediately shown to our room.  Nice accommodations - with our own bathroom (although, we both agree...Froedtert...time to update the TVs!)

Our nurse came in, introduced herself, and went over what each day will look like going forward.  Effective today, Andy's in a mask any time he's outside of his house or the Day Center room.  I'm in a mask any time I'm outside of the Day Center room or our house. We are not requiring the kids to wear masks, so it's up to Andy and I to do everything we can.  OK.  Here we go.  

Andy modeling his fancy new bracelet he got!

They took Andy's weight. Something they will do each day.  They want to make sure he's not losing weight.  Nor is he gaining weight...not ice cream weight, but fluid retention weight.  Sharon (the nurse) took Andy's labs (so easy with the TriCat) and reviewed the numbers we would be watching for the next few weeks.  Ugh.  There are NEW numbers that we hadn't been watching before, which meant I needed to create a new page in my notebook.  Such troubles I have.  

Numbers we are still monitoring: WBC | ANC | Platelets | Hg 

New Numbers: Potassium | Magnesium | Cr... (not sure what this exactly is, but it's Kidney function - if this number drops too low, he will receive fluids)

Hg - Down to 14.2 (If this falls below 7, Andy will receive a blood transfusion)

ANC - Down to 2.36 

Platelets - Up to 171

WBC - Down to 3.9

Mag - 1.9

And because old habits die hard, calcium is down to 8.7 and Proteins are holding stable at 6.6.

At about 10 AM they started his fluids and at 10:20 he received his pre-meds - Dex and Zolfran (for nausea today) and an IV of something for the nausea over the next 2 - 3 days. Around 10:30 Dr. A came in - he just happened to be the doctor at the Day Center today - each day, it will be someone different.  But we love Dr. A and he said things like numbers look perfect and things are excellent and he's feeling good about this - and so...we are feeling perfect, and excellent, and good too!

We waited for a long time then until our chemo was released and ready.  Finally at 11:51 Andy started with his ice chips.  Remember, for the Melphalan (chemo) Andy is supposed to keep his mouth SUPER cold to prevent the side effect of very painful mouth sores.  15 minutes before, during the chemo and 30-60 minutes after.  In all he had about 4 cups of ice chips, 3 popsicles, a Fla-Vor-Ice, some frozen Gatorade chips, and ice cream.  Plus all the fluids...he might float away tonight!

At 12:07 his chemo started and by about ten to 1 we were done!  During this time we worked, we watched friends, we did some crossword puzzles, and we laughed. After the chemo we needed a 2 hour observation.  During his first hour, he was still eating ice and had a fluid IV.  During this time, I ran down to the cafeteria, because we decided to not pack a lunch...which was rather silly!

Andy's IV pole that he could walk around with!  We named her Pole-lene

During our last hour of observation we both worked a little more.  

Sharon came back in for discharge instructions.  She told us what to do with Andy's heightened radio-activity for the next 48 hours, along with further tips to avoid mouth sores...which could lead to infection, and what our steps of meds should be if Andy's feeling any nausea.  

And then.... we walked out of the Cancer Center - fully masked - and I'm realizing I don't have a picture of this.  But it was weird.  Like we are just released to the wild.  WEIRD. 

We got home and finished the work day!  Oliver got home from school, went to a friend's house, Eleanor went to work, and Andy and I took a walk (sitting all day is exhausting).  Now we are enjoying a wonderful meal that was delivered to us!

I keep asking Andy how he's doing.  He's doing fine.  YAY.  We aren't naïve.  We know this process is going to be rough.  We were told by another Doctor and another Nurse today that around Friday, when the number tank, so will the feeling.  So we are going to just embrace every moment of feeling descent.  

Tomorrow we head back to Froedtert for labs and monitoring, but it should be a quick visit.  Then Thursday all those Stem Cells get readmitted into Andy's squeaky-clean body!  Ready to do their thing.

We cannot begin to thank you enough for the texts, the messages, and the cards - OHHHH the cards!!  Your thoughts and prayers and well wishes have kept us all going and we are eternally grateful.   We can't wait to pay all this love and generosity forward!  And that's EXACTLY what we intend on doing.