Friday, February 28, 2025

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! ๐Ÿ˜†

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!  

Thursday, February 27, 2025

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 ๐Ÿ˜†๐Ÿ˜‡

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. 


Monday, February 17, 2025

What is a SCT? Phase III - The Transplant.

Phase I

Phase II

Phase III - And now it begins.  

I hope you have enjoyed the clarity of the last two posts, because this is where things become a little less clear.  I'll share what we DO know. 

March 17.  The day we have been waiting for.  And truthfully...a tad dreading.  

On March 17 we will head to the main campus for our dose of Chemo.  

Because Andy has the most incredible support team, we are electing to do his entire SCT outpatient.  There are risks and rewards with both inpatient and outpatient.  But we do believe that Andy will recover better in his own bed.  Drifting in and out of sleep, listening to our house be a house.  Listen to the kids.  Listening to us screaming at Debbie for barking too much.  Drinking his own water (what is it about your own water?  Does everyone love their tap water as much as we do?)  Laying in his own sheets.  But in order to do this...we have to try and create as sterile as an environment as possible -with said children and said dog.  This part...I can't wrap my head around.  But I'll get there. 

If we were to do inpatient, Andy would be in the hospital for approximately 2 weeks.  

Monday we will receive chemotherapy.   That's about as much as I know.  We'll receive Chemo and at some point...we'll go home.  

Tuesday, March 18....I don't really know what happens on this day.  There is nothing on our calendar and there is nothing in our summary.  It's a mystery!

But then on Wednesday, March 19 I know we head back to Froedtert for 'THE INFUSION'.  

I don't have a ton of details on this process either.  The 1.5 inch binder does not provide a very detailed account the actual transplant.  But I promise - as we find out more information - so will you!

After that, we will go back to the hospital each day for our team to 'assess our status'.  Each day will include daily weight, vital signs, lab draws, and 'head-to-toe' physical exam. Care and daily discharge will all be dictated by how well Andy is eating, feeling, drinking, lab results, vitals, and questions / education.    

This phase is called the 'Myelosppression Phase' which is a word to describe low blood counts and our main concern (well, it's all just a giant concern) is the low white blood cell count, which means Andy is going to be HIGHLY susceptible to everything and anything - hence us creating a sterile environment in our home.  

This period lasts until the transplanted cells begin to function and produce new cells. I mean, it lasts beyond that, but this is the highly critical phase.  White blood cells are the first to recover and can take an average for two to four weeks.  Red blood cells and platelets take longer and so, we may require more transfusions even after the transplant (someone remind me of this in the future!)

Dr. Al told us that 50% of his outpatient patients end up in the hospital at some point during these two weeks.  But then he told us that most of his patients are also over the age of 70...so the odds are in our favor.  But not to get discouraged if we do end up getting admitted.  

This is when my head starts swirling and the words on the page start to blur together - wrapping my head around this post treatment phase.  So, we'll let this be enough information for now.  

Exactly one Month from today we'll start Phase III....of course, it would also be the shortest month of the year.  Time is flying and yet it's standing still!

Thursday, February 13, 2025

Cycle 4 - Week 3

I interrupt our updates on the SCT to provide you an update on Cycle 4, Week 3. 

Today we headed to Mooreland Reserve for our regularly scheduled treatment. 

We had a super early appointment today - labs at 7:15 - which was great...but I actually felt like it took 'a bit longer' to get results.  Maybe it was too early.  Maybe the lab techs didn't have enough coffee yet.

Overall, things look good - some up, some down. But overall, right where we need them to be.  In fact, we were a little surprised that Andy's WBC was where it was, because the cough, that we thought he had gotten rid of, has decided to come back!  

Hg - 14.4 (exactly where it was last week).  Check out that nice progression since our admission into the hospital back in October!  Holding strong in the green - Way to Go, Andy!!


ANC 3.6 (up from 2.6)

Platelets - 204 (down from 219)

WBC - 5.7 (up from 4.4)

RBC - 4.44 (exactly the same as last week)

Calcium - 8.6 (down from 9.0) 

Total Protein - 6.6 (down from 6.8) Check out this beauty too!  Love seeing those proteins come down and stay in the green!


Oh - and then later on in the day Andy received a notification that his light chain numbers were back...I did NOT get the message...because...healthy boundaries from MyChart ๐Ÿ˜†

Kappa - 7.0, up from 6.0

Lambda - 6.3, down from 7.1

Ration - 1.11, up from .85

Mostly in the green and I still don't really know what we really want these light chains to mean or which part of the protein is Kappa, and which part is Lambda.  I just know I'm always scared of them.  But, they seem to be behaving.  

So - back to the Infusion Rooms we went.  I don't want you to ever have to go to the Cancer Center at Moorland Reserve, but it is really nice.  It's open and bright and at 7:45 AM, it's very quiet!  We got settled into our room and waited for our intake nurse.  Yesterday's snow may the center even brighter and we enjoyed our view...AND were delighted to find Bubble Guppies on TV!  This was Oliver's FAVORITE OBSESSION as a baby, so it did bring us some joy.  



We were also very excited to have one of our favorite nurses from Menomonee Falls today at Moorland!  We went through ALL the questions of side effects and complications...none of which Andy had.  And then Andy got his Velcade and his Dara.  

Now here's the weird thing.  And I don't know if I'm right.  But you guys.  There is a VERY good chance this was our last visit to the cancer center infusion center for 50 years.  Our last dose of velcade and dara for 50 years.  I don't totally know what our maintenance phase is going to look like.  I don't totally know we will take on a regular basis going forward.  There has been mention of Revlimid...but not ever of the injections.  

So.  We walked out.  And left the Cancer Center behind us.  Ready for the next journey ahead of us.  


And I'm going to just keep saying, we're done for 50 years.  We know Andy is not getting CURED from MM.  We know, or at least highly suspect, his MM will come back some day.  And we'll be back at this spot.  But no one knows when.  So I feel like...50 years is a good compromise.  If his cancer HAS to come back...then it can come back...in 50 years.  So.  I'm just gonna need you all to get on board with this theory.  

And for now - we celebrate.  We celebrate that Andy has been an amazing rockstar. He has responded SO well to his treatments that we get to take our next step in rocketing his cancer in remission!  

Wednesday, February 12, 2025

What is a SCT? Phase II - Collection

PHASE I - Click here for a reminder on what happens during the first phase.

Phase II - 
So here we are in the collection phase....

On Monday, March 3, we'll head to the Main Campus for collection of the Stem Cells...or "Apheresis".  
Collection may take up to 6 hours the first day.  

Blood cells are made up of White Blood Cells, Red Blood Cells, and Platelets.  Stem cells are essentially 'immature cells' that develop into those three type cells of cells.  (And if you think for one minute I have memorized this information, you are crazy!  I'm basically typing out ALL my notes!  Please...I have a Bachelor's in Business Administration with an emphasis in English.  I have no idea what I'm talking about!)  This is so interesting...."stem cells are constantly dividing and changing into different types of blood cells to replace older blood cells."

Apheresis means 'to separate' and an apheresis machine will be used to separate the stem cells from the other blood components.  The stem cells are sent...to a bag...and the remaining blood is returned to Andy.  MOST of the remaining blood.  A small amount of red blood cells and platelets are removed during the collection and so Andy's blood counts will be monitored closely and he may require blood or platelet transfusions prior to going home for the day. (Note to self...don't freak out when the say Andy needs a blood transfusion prior to going home for the day!)

Andy's stem cells will be sent to the lab where they will be counted...I'm sure, individually, one by one.  They will be tested. And cryopreserved....they will be frozen.  I like to imagine a Ziploc bag of Andy's stem cells being tossed into the cafeteria freezer, next to someone's freezer burned microwave lunch they forgot about!

We will actually aim to collect enough cells for 2 transplants; our doctor will determine if we need to come back and how many times we need to come back (we are scheduled for 3 days - all outpatient).  While we don't plan on doing 2 transplants...if we are going through the process of one, we may as well collect enough for 2.  

The next days, if needed, the procedure will take less time - maybe 4 hours.  Each night we'll do a Neupogen injection, in case we need to come back the following day.  

But, God-willing, we'll collect what we need in 2 days.  

Then, on March 10, we'll head BACK to main campus for a 'consent conference' with our surgeon, Dr. A.  We will review the results of the collection and the testing and sign all the forms.  

Next up....Phase III - Transplant.  

Tuesday, February 11, 2025

What is a SCT? Phase I - Preparation for Collection

We've had a lot of questions on timeline, process, and how to help. 

So let's focus on timeline and process:

Andy is going through an Autologous Stem Cell Transplant - which means we will be using his own blood.  No need for a donor.  

We continue with cycle 4 through February 13.  The process is to wait two weeks after the end of a cycle to start the SCT process, which leads us to February 28.  
But before then, Andy will start Claritin and Magnesium for a few days (I don't remember why and I don't remember how long he needs to take them for...just wrote that down in my book of questions!)

Then we move to the complete physical work up to ensure Andy is physically ready for the extreme toll he is about to take his body through. 

We also start daily Neupogen shots.  Neupogen shots will be used to stimulate the production of neutrophils (Clear as mud, right?).  Said another way, Neupogen will help stimulate production of stem cells in the blood that can be collected for the SCT. 

    LITTLE DETOUR - Instead of using bone marrow, we are using Stem Cells for Andy's transplant.  Stem Cells can be collected from the blood.  The Neupogen will help release stem cells from Andy's bone marrow into the blood, which will help with the collection.  

Friday, February 28 Andy will have a 'Trifusion Catheter Line' placed for the stem cell collection and the transplant.  The catheter is placed in his upper chest through intravenous sedation (Surgery #1!) But will be helpful so we don't have to keep place IV lines each time we go in for blood work, labs, chemo, etc.  Andy isn't thrilled about this part.  I can't blame him.  But I bet the do such a great job, he won't even notice it!

We will continue the Neupogen injections through the weekend.  Which means Andy and I will drive to the main Froedtert campus each day.  

Sunday we will also receive a Mozobil injection.  Mozobil will 'mobilize' the stimulated stem cells (from the Neupogen) from the bone marrow into the bloodstream, ready for collection. You guys...for fun...this is what our paperwork says..."Treatment with Mozobil should begin after the patient has received G-CSF (AKA neupogen)  once daily for four days. Mozobil should be administered approximately 11 hours prior to initiation of apheresis* (Apheresis is the procedure for collecting stem cells) for up to 4 consecutive days."  Now...technically, I know all that is happening...but, like what does that all actually say?  It's no wonder our heads our swimming, I read our handouts 100 times, and we are INCREDIBLY blessed with super smart friends that know exactly what we are reading to them and help us decipher all this nonsense!  

I'm assuming these appointments will be relatively quick...but I could be in for a big surprise.  

OK....I think that's enough for now...what do you think?  Next time, I'll review Phase II - Collection.  









Monday, February 10, 2025

Express Train to Stem Cell Transplant

Thursday (January 30) - Andy and I went to our standard Infusion appointment at Menomonee Falls and met with our Oncologist, Dr. Al.  

The appointment went well. But what we haven't talked about is Dr. Al also said - the recovery is "SO remarkable", we are ready to proceed to Stem Cell Transplant (SCT).  

While this is great news...We couldn't help think, Wait.  We leave for Spring Break on Friday, March 21.  We can't have a SCT.  Dr. Al told us to talk to Dr. A on Wednesday, when we already had our SCT consult scheduled.  

Friday afternoon every single appointment was scheduled for our SCT.  And friends...it takes A LOT of appointments to go through a SCT.  Over the weekend we received a 1.5 inch binder filled with every.single.detail. about a SCT.  Sure looked like this train left the station.  

So Andy and I started wrapping our heads around the surgery, which was happening a month earlier than expected, and was cancelling our spring break vacation.  We wrapped our heads around how to tell our kids.  And how to tell our travel mates.  

Wednesday couldn't come fast enough.  

We got to the appointment on Wednesday and Dr. A talked to us about potentially moving the surgery so we could go on Spring Break.  We weren't expecting that.  We weren't expecting the decision to be pushed back to us.  Have we mentioned how much we love our medical team? 

Dr. A talked to us, gave us time to talk, gave us possibilities.  It was amazing. 

Ultimately, we decided, full steam ahead with surgery.  Andy - and I - have already been wrapping our heads around starting the process.  And starting now, means starting recovery one month earlier.  Means more summer time in remission and less in recovery.  It means more energy.

So Wednesday we told the kids - no more Florida for Spring Break.  Instead....dad is going to be isolated in his bedroom and we are going to wear masks in the house.  They. Were. Amazing.  Seriously.  Our kids give us a lot of grief (as kids do), but I'm so incredibly proud of them.  

Then Thursday we called our friends that we were supposed to be traveling to Florida with.  Of course their response was, well that sucks, but tell us more about the surgery.  

And now...now we get to spend the next several days telling you all about exactly what this process entails.  As we continue to learn about it.  

So buckle up...because this train moves FAST!  ๐Ÿš…

Thursday, February 6, 2025

Cycle 4 - Week 2

 I'm not really even sure what to say. 

Today was infusion day. 

We went to the hospital. We got labs. We got results. We got treatment. We went home.  

It's uneventful.  It was glorious.  

Overall his labs looked good.   Some numbers up. Some numbers down.  But overall level.  

What's even more mind blowing is we did officially find out Andy's Stem Cell Transplant has been scheduled for March 17. 

So. So. So. many more details on that....later.


Day 98

This post is so late - and I'm sorry.  Every one has done such an amazing job checking in on us and praying for us...and here I am - two...