Preparing

 It was a good weekend.  And a good day.  

In all the preparation for the upcoming SCT, we've spent the last few days saying 'goodbye' to normalcy. 

We've had our favorite beer from our favorite brewery, we've seen some family and friends and we have cleaned nooks and crannys of this house that probably haven't been cleaned since either 1) we moved in or 2) COVID. 

We've organized the many generous gifts we've received of blankets, snacks, games, puzzles, and lottery tickets (a few winners set aside!).  We've hung up cards and read through the text messages over and over again.  

We've read and re-read the prescriptions to start taking and the ones to stop.  

We've got the Clorox wipes lined up.  

We've got the ice chips in the freezer.  

We've been to mass.  We've said our prayers.

Yes.  I think we are as ready as we can be.  While we wish we were going tomorrow, I think I'm grateful we were pushed back a day.  We've had such an amazing day as a family and are really relaxing tonight.  I'm not sure how relaxed we'll be tomorrow, so this is nice.  We ate dinner as a family while watching a movie and we feel peaceful.  

Thank you.  For all the continued thoughts and prayers and messages and well wishes.  We're ready, because of you!

Consult Day

 Today was our first day back to Froedtert in a week!  It was Consult Day!

Have I mentioned how much better morning appointments are?  Waiting the morning for an appointment is H-A-R-D.  But finally it was time to head to Campus.  

First we stopped at the Second Floor for some labs - Andy also got the badges for his TriCat replaced (THAT'S what we are going to call it - his TriCat for Trifusion Catheter).  We also learned that the TriCat would stay in for the length of time he 'would be in the hospital' for his Infusion.  So once his numbers stabilize post infusion, they'll pull the Catheter.  It's nice to know there is a relative end in sight and that he wasn't going to have this thing for months.  Although...besides some itching, he says it really doesn't bother him. 

Then over to the 4th Floor Grace Clinic for our consult. 

You guys.  Our surgeon just busts through the door all smiles, all friendly, so happy to see us - all just to introduce our nurse (or care consultant, or whatever her job title is!  Let's just call her Nurse J - she schedules all our appointments for us and tells us where to go and what to do!)  I just find it so fascinating that this brilliant man, who is saving Andy's life, has all the personality and most polite bed side manners!  And we love him!

So we met with Nurse J and she informed us that Chemo Day has been bumped back one day to Tuesday, March 18.  While this is not devastating news....it's not news we wanted to hear.  She said it had to do with the scheduling of Doctors...it is what it is, but given we are ready for treatment TODAY, we certainly didn't want to have to want another entire day.

She then went over our care plan again and had Andy sign all the forms.  We signed forms for consent to treatments, risks, side effects, medications, and who knows what else.  He also signed a form that said I agree to be his primary care giver.  Dang.  I'm locked in now!

While we didn't learn a lot new from Nurse J, she did explain that the Melphalan can cause severe mouth sores and one way they have found to combat the 'mucositis (mouth sores)' is cryotherapy. In other words, for 15 minutes before, during, and 30 minutes after the chemo, Andy should continuously chew ice, popsicles, or ice cream!  This helps keep the mouth very could which prevents the Melphalan from adhering to his mouth.  Interesting.  And once I hear we need to do something, I'm ALL IN.  So poor Andy is going to go to the hospital on Tuesday with A LOT of popsicles...already placed my Amazon order for those cheep ice-y ones that come in a bag (because, how do you keep popsicles cold at the hospital?)  Anyway....

We also talked about when I should call the 24 hour nurse line (answer - any time! For any reason!) And what are the reasons that Andy could potentially get admitted to the hospital post transplant.  

We once again were instructed that Andy should feel pretty normal for that first week and then once his numbers drop, he'll start to feel pretty lousy.  During that time of low counts, he may need platelets, bags of blood, electrolytes, etc.  Nurse J informed me that on those days, we might be at the hospital longer and that I could leave Andy there and go do anything I needed to get done.  Sorry, Nurse J.  I don't see that happening :-)  I laughed at her.  She's kind and acknowledged she didn't really see me leaving, but had to say it anyway!

She went through visiting hours, should we be admitted and how many visitors Andy could have.  However, she said, we really discouraged any visitors in the hospital and she kept saying, just pretend it's March 2020.    

She kept asking us if we had any questions and maybe we'd ask one or two, but for the most part we just stared at her and tried absorbing everything she had to say.  

Then Dr. A came in and basically went over everything Nurse J had just gone over.  He went into a little more review on the actual Stem Cell Transplant.  He said that Andy's proteins were the highest he had ever seen, so the fact that he could still detect some myeloma cells, was not surprising.  However, that is why we were doing the SCT, to kill everything else that was hiding in his body and get it replaced with the good cells.  We talked a teeny bit about maintenance medication plan post SCT, but essentially that we'd cross that bridge when we came to it.  

He talked about our milestones of the first 30 days, 30 - 60 days, 60 - 90 days and then post 90 days.  He said he kept giving us worst case scenario so that we weren't surprised by anything, but overall, he was feeling hopeful that Andy would have a very good and positive response to the SCT. He commented on Andy's overall attitude, spirit, and energy and how that has such a positive impact on the procedure.  He also complimented Andy's family support - and he wasn't just talking about me...we've told him stories about all of you.  He knows were aren't going through this alone and he said having that care network is HUGE.  So keep it up care network - you are helping when you don't even know it!

Hm. Hm. Hm....I think that's most of the details.  It really was just a lot of review and a lot of opportunity for questions.  I don't feel like we have a lot of questions because we don't know what we don't know and are just kind of along for the ride!  Everyone is so thorough and so patient, it's just incredible.  

Dr. A, while giving Andy a quick physical mentioned that all Andy's test results came back positive and that his body is in good shape to accept the transplant.  

After Dr. A left, the pharmacists came in to review all our medications.  Andy turned to face them and blocked my view of a piece of paper they were reviewing with him.  I was scribbling ALL the notes as they were talking about the various medications Andy would be getting to fight infections and nausea. Andy turned to ask me if I had any questions and I realized the sheet they were reviewing had everything written down.  I mostly like to write down why we are taking something, but even THAT was on our sheet.  Man, it's like this isn't their first rodeo!  

And then we were done with our pharma consult.  

Each person we met with today asked Andy how he was feeling.  They also led with 'nervous'? And Andy always trumped that emotion with excitement.  It feels weird to be excited for something we know is going to make Andy feel bad.  But we also know that pain is temporary and that this will hopefully make Andy feel SO SO good for SO SO long.  That this SCT will know Andy's MM into remission and that this little blog of mine will go silent for years and years.  We are excited.  Excited and ready.  And we are NOT patient.  And waiting is SO hard. We don't want to be here, but since we are - Let's Do the Damn Thing!! 

Apheresis Day!

Today was one of the days we were waiting for!  Apheresis Day!

We got to the hospital a little before 8.  It's amazing how different the campus feels on a Monday morning compared to a Sunday evening!  

First up - labs.  We were real excited to get these back as we've been pumping Andy full of Neupogen for the last 4 days!

Then we went over to the Grace Clinic for his Apheresis (or collection or harvest...whatever you want to call it).  

We waited a bit in the lobby and of course, we got to color...although sadly, I didn't have my pencil sharpener and the pencils were quite dull.  

We got checked into our room and given a complete tour of the Apheresis machine. This process is amazing.  Andy was basically a mad scientist's laboratory all day!  

We also started getting our lab results back.  Happy to report that after not having treatment for a few weeks, his protein numbers didn't change at all. His Hg held strong.  His ANC went from 3.6 to 33.55 and his White Blood Cell count went from 5.7 to 46.6.  Looks like Andy was ready for some harvesting.  

He got all hooked up and they started the process.  Once that started he was not allowed to leave his bed.  He could swing his legs over the side or stand if he needed, but for the most part.  Nothing.  At least with Andy being in the bed, I got the comfortable chair! :-)  Usually, I'm on the cheap chair in the corner (cancer patients get all the royal treatment!)

It was a long day.  We watched a lot of friends, I got some work done over a very slow internet, we did some crossword puzzles, and ate a lot of candy.  

Our Infusion Nurse (or maybe she's the care coordinator?) stopped by and provided us a few more details for next Monday's appointment (just a consult with Dr. A) and some more details of March 17 on...She said she'd get a preliminary count of the stem cells to determine if we needed to stick around for the Neupogen shots at 4 PM.  If we were borderline, she'd have us get the shots in preparation for another day of collection.  But if they felt good about the number of cells the collected, we could skip the shots today.  

We wrapped up a little after 3, walked some stuff to the car (because as our nurse kindly pointed out - we brought enough stuff to spend the night!) and waited for the call from Jeannie (the Infusion Nurse).  

Just a little before 4 she gave us a call - there were enough cells collected today that we do NOT need to come back tomorrow AND we don't need the Neupogen shots tonight.  Which means no shots for Andy today!!  

We're feeling pretty good today!  We had our minds wrapped around a 3 day harvest and he did it in 1.  Thank GOD our collection was uneventful.  No side effects, no reactions.  Nothing.  We're going to keep pumping Andy full of electrolytes, magnesium, and potassium tonight (which, we learned can all be obtained through...CUSTARD!) and let his body rest.  

Now his little cells have been thrown in the freezer until they are ready to be thawed out in two weeks.  These will be the longest, fastest two weeks of our lives.  

Day 4

For the most part, today was a pretty normal Sunday.  Did some grocery shopping, some meal planning, and started the deep clean of our house in effort to make as sterile as possible environment for Andy.  

This started by cleaning our master bathroom floor and windows with a toothbrush and taking our vents off and cleaning them with soapy water.  I should host a party in my bathroom.  It's sparkly!  

Andy had a long list of things he wanted to get done this weekend, but after receiving his 10# lifting restriction (and learning that a gallon of milk is 9#), his list was quickly shortened.  However, in between the things he wanted to do, he also cranked out a pretty tough puzzle with Oliver in ONE DAY! No photographic evidence...so just take my word for it.  

Around 3:30 we were reminded why we are being homebodies and reminded of our cancer journey.  So Andy took his Imodium and we headed back to our home away from home...Froedtert.  

Today Andy received his 10, 11, 12 Neupogen injections.  Hopefully these are last injections of this type for YEARS.  Then today we received a new injection - Mozobil.  This shot starts to pull all those stem cells we've been growing for the past several days out of Andy's bone marrow and into is blood stream.  I am SO excited to see what his ANC numbers are tomorrow!  

Mozobil is a new injection for Andy and so we had to wait out a 30 minute observation period.  Rockstar Andy of course, had no reaction.  

And guess who our nurse was today - Gina!  She sat and talked to us the entire 30 minute observation period.  Of course she answered any questions we had, but also just chit chatted with us making the time fly.  

OK, you are probably wondering why Andy took Imodium earlier (and Andy is probably wondering why I shared this with you...) one of the more common reactions of the Mozobil is nausea and diarrhea.  We went to our appointment equipped with ginger chews, ginger essential oils, peppermint essential oils, and lavender.  None of this was needed and Andy's GI track is doing just fine.  

Seriously.  He is just amazing.  

We said good-bye to the Cancer Center and headed up, ready for our big day tomorrow!

Day 3

Andy slept well last night.  We were both a little concerned that he now has a tube in one of his neck veins with three lines dangling from it.  He can't sleep on his right side or his stomach, and he snores on his back.  He was pretty sore as we were going to bed and was trying to find a comfortable position to lay.  And he did!  

The rest of the day was pretty uneventful - Eleanor had Solo and Ensemble, which was held at New Berlin West, so both Andy and I got to go watch her play.  She did great and even earned a '1'! on her solo! 

We decided to take both kids to our appointment this evening.  We wanted to show them where we would be spending much of our upcoming time and given that it was a weekend, we assumed it would be relatively quiet on campus.  

They were both pretty amazed at the size and magnitude of the campus!  We got to even impress them with demonstrating that we knew exactly where we were going (OK, so we impressed ourselves with that too!)

When we got to the Cancer Center, we were the only ones there!  And two nurses were waiting for us - including Gina!  Our nurse from Thursday!  Last time we saw Gina assured she assured me that when I bring Andy in for his daily treatments after his infusion, I absolutely must take some of that time for myself.  Run some errands, get a massage.  She promised me that while he was in that center, he was receiving the best care possible.  Well...I'm still not really sure I plan on leaving his side ;-)  BUT...I told her we could do a test run today and I staid with the kids, while Andy went in back for his Neupogen injections #3 or 7,8, 9.  These are Andy's first injections he has received since his original diagnosis that I have not been next to his side 😕

I showed Oliver all the Solar movers and then we found Scrabble.  Eleanor brought a pencil sharpener for us and spent time sharpening all the colored pencils!  

Andy's injections went very fast.  And then - because we were the only people in the Cancer Center, Gina took the kids in back to show them where dad would be spending his days.  She showed them the rooms and explained what she would be doing to take care of him while he was there.  She talked about what he might get (blood, magnesium, etc), she showed were his chemo would be mixed and was LEGIT disappointed she couldn't show them the robot arm that mixed the chemo.  She told them Andy might need to get admitted to the hospital if he got a fever or an infection, but that's OK.  And they'd try to get him home as quickly as possible.  She showed them all the tubes where they collect blood to send to the labs.  

She was patient.  She was thorough.  She was compassionate.  I am SO thrilled we brought the kids with us.  They will picture dad.  In THAT hospital.  With THAT nurse.  Taking care of him.  Nothing scary about that.  

And then we left and took the kids to Mo's Irish Pub for dinner.  The very same place that Andy and I went on our very first date 13 years ago.  

Tomorrow - more injections to boost his WBC and a new injection to start mobilizing those cells for collection!

Day 2

I will try to provide this update with the same energy and fervor I gave yesterdays, but after just two days spent at the hospital, I'm feeling exhausted.  And if I'm feeling exhausted, then Andy must be, whatever word is more than exhausted! 😆

Today Andy had his port placement...We learned he does NOT have a port.  We have a Tri fusion Catheter.  Super fun, this thing is going to pull the stem cells from Andy's body, while putting stem cells back into his body.  The third "lumen" (let's call it a tube) will be used if Andy needs additional blood, or electrolytes during his harvest or transfusion.  I won't post the picture of his Tri fusion Catheter (good lord, we have to call this thing something else), because let's be real, even I have to draw the line somewhere!

So, we got ourselves to the Center for Advanced Care / Day Surgery Center.  Andy was called back rather quickly.  You guys.  This place was MASSIVE.  Like rows and rows of bays filled with people going in for day surgery and nurses moving around everywhere!  It reminded me of the Dozers from Fraggle Rock.  So much activity.  

Mind you, it is now 12:30 and Andy has not eaten anything all day.  The day is getting long!   But we got him changed and all checked in.  I got set up for my text message alerts.  The actual procedure was only supposed to last about 20 minutes and then one hour in recovery.  I would receive a text when I could meet Andy in recovery.  Then it was time for Andy to get wheeled back into surgery.  This by no means was major surgery, but still.  There is always a lump in your throat when your person gets wheeled one way and I had to walk another way.

  

I got myself situated in the waiting room and VERY quickly dove into my own lunch!  Having a place to call home for awhile I was actually able to get some work done.  The sun felt SO good, but the wind was just crazy!  The sun was actually too bright, so I had to move.  Then the fire alarm went off....but literally, no one moved.  So I just sat there.  About 15 minutes later...we got the all clear.  I mean, I hope Andy's time in the OR was less eventful then mine!

They also had these big TV monitors that showed all the patients and where they were in the process of their surgery!  

Finally, I received the message that Andy was in his recovery room and would be ready for me shortly.  I figured I would finish up one thing and then pack up, but the nurse was calling me back right away.  

Andy was in a new room and I carefully pulled the curtain back, expecting to see Andy 1/2 out of it, laying in his bed.  Nope.  Not our Andy.  He was sitting up, chit chatting with another nurse, looking totally normal, like nothing was going on.  I swear you guys...he's amazing.  But still we had to wait there for one hour before he could get discharged.  I handed Andy his sandwich I had made for him, which made him VERY happy!! I got some more work done and we watched Friends (until it was over and we ended up watching a very strange National Geographic about people living in the mountains of Tennessee that made Meth in soda bottles...you guys.  Did know that Meth has battery acid in it?  Don't. do. meth.)

And then it was time for discharge.  We found out that Andy will have his chest catheter in for likely 5 weeks.  And that made me feel sad for him.  He also shouldn't really get it wet...so we are going to go through a lot of saran wrap.  

Then Andy walked out of day surgery like it was no big deal.  Also, we decided (I decided?) that it REALLY wasn't necessary for us to move our car yesterday and that we could probably walk to the cancer center.  It turns out, we were right and it was actually very easy to find where we needed to go.  

We had time until we needed to check in for our Neupogen shots, but our cafeteria was already closed, so we went right to the Cancer Center to wait.  

These are all the solar movers that I talked about yesterday!  They just go on and on down the window panels!

Sadly, our pictures from yesterday were not there anymore...so we had to color new ones!

And then we were called back. New nurse, same room.  And because we had just spent most of the day in the day hospital, we had very little intake to do, no vitals, no questions.  The nurse shut the curtain (oh hey there, don't mind the girl behind the curtain!) Three shots in the belly and off we went.

And that was Day 2.  We found our way back to the car and headed home.  Stopped to pick up pizza and now we are all sitting on the couch totally vegging.  Andy had a big day.  I did nothing.  And it's amazing how doing nothing can make you totally exhausted.  

We are ready for Day 3 tomorrow and very excited to spend substantial less time at the hospital!  

Day 1 (or 2) depending on who you ask...

Today was day 1 of our SCT journey.  

Technically Andy calls yesterday day 1 because he had his CT scan yesterday (spoiler, results looked good...no changes to his previous lesions and no new bone lesions.  yay!)

But as I'm the one that is narrating journey, I say today was day 1 😆😇

Today we went to the Froedtert Main Campus and were quickly reminded how lucky we were to spend most of our treatment time at our sleepy Moorland Reserve Clinic!  

We found the green structure and went to the Center for Advanced Care.  Let's be honest...we aren't totally sure what all these tests are for, except for the fact that we are essentially ensuring that Andy's body is ready to handle what we are going to put it through during his SCT.  

First up - Pulmonary Clinic.  During our conversation with our nurse, she mentioned something about the test being 75 minutes....spoiler - it was NOT.  Andy must follow instructions very well, because we were in and out fairly quickly. 

Off to the Heart and Vascular Center for our EKG.  This was a simple transition of an elevator ride down from floor 4 to floor 3.  

The EKG waiting area was my favorite.  Here Andy and I were able to listen to one of our 'roommates' scrolling through Insta-reals, or whatever.  I mean, this was fairly loud....It is also where we were entertained by the women wearing a t-shirt that said "It's I don't give a Fvck O'clock".  Her mom (or whoever she was there with) was trying to navigate a VERY large wheelchair, which she ultimately decided she could not navigate and just left it in the door frame, to which the t-shirt wearing friend had to go back and get the chair.  AND the woman that, when they called her name, waived her arms 'like she just won bingo' (according to Andy).  The nurse that called her name...was not amused (clearly not as amused as we were!)  Andy and I got called back, and seriously, as quickly as we were in there - we were out.  EKGs can be fast!

On to waiting area 2 for our Echo.  We weren't as entertained this time, but may have provided some entertainment to others as Andy and I went down a political rabbit hole!  Echo went smoothly and without a hitch.  

We were now down with the Center for Advanced Care and had to move our car from the Green Lot to the Gold Lot for the Day Hospital (Spoiler...we probably could have walked - ha!)

When we went to check into the day hospital for our first Neupogen shot, we were told we couldn't check in for our 4:30 appointment until 4 PM.  It was a little after 3.  

Andy and I decided to become a little more familiar with the Day Hospital, where we will be spending a lot of time in the future weeks / months.  We walked around and found a little bistro (good to know).  We got a snack and just hung out for a minute.  I don't love that Andy has cancer.  But I am blessed that even waiting for the journey of our life, spending time with this guy is my absolute favorite thing to do!

At 4 PM we went back up to the Day Hospital to check in.  In this waiting room there are a lot of puzzles, a lot of those solar moving things (bad explanation, I'll take a picture tomorrow!)  We colored.  And left our coloring sheets behind...do you think they'll be there tomorrow?  Or do we have to start new ones?  

We were called back by our nurse Gina.  Oh.  How we loved Gina.  Full of energy. Full of excitement and happiness.  She also works in the BMT area and was happy to answer any questions we had.  As we have no idea what to ask...she just started talking to us about the process.  Particularly the next few days of preparing for and eventual stem cell collection.  She talked about just how far treatment has come in her 17 years of working in oncology.   Particularly with the difference between Stem Cell collection from Bone Marrow collection.  She shared that Froedtert is one of the top 3 SCT centers.  Right here in our backyard!  Trust me.  It's never lost on Andy and I how fortunate we are to have Froedtert right here.  Receiving world class care in our backyard!  

Gina also said something that we had never heard before. Remission.  

She was asking Andy about all his symptoms, which, of course he has none.  She's like, of course you feel good, you are in remission.  We were like....um, what?   And Gina explained that really to get to the place of SCT, most of the cancer needs to be knocked out.  So, to even do the SCT, Andy is either in PR (Partial Remission) or VGPR (Very Good Partial Remission).  Then, she left and got Andy's Neupogen.  

Andy received not one, not two, but THREE Neupogen injections.  Rockstar.  His WBC count will be so high, he's going to be able to push the elevator buttons with his tongue! (I'm kidding, I'm kidding!  I actually told him that from now on, no touching surfaces with his hands!  Doors open with our feet our elbows, buttons pushed with elbows!)

Then we got a tour of the day hospital and were told what to expect each day.  Gina was a saint.  We are very hopeful we'll get to see her this weekend when we are back!  

And then we left...Day 1.  Done.  

Tomorrow - Port Day and Neupogen shot 2 (or, I guess, technically 4, 5, and 6).  

He's amazing.