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.