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 days late with a post. 

You see.  It's much easier to say, "Andy has been diagnosed with cancer and it's terrifying and it's surreal" then it is to say, "Andy's bone marrow biopsy came back with NO DETECTABLE MYELOMA." 

Because, you see, that is still a little terrifying and a little surreal.  And it's DRENCHED in hope.  And excitement.  And encouragement.  And, let me be honest.  Sometimes those things are really scary.  

BUT - let me repeat.  Andy's Bone Marrow Biopsy came back with NO DETECABLE MYELOMA.  

Can I first get an AMEN.  And then an Hallelujah.     

And then where to go?  There is SO much information and I just feverishly took notes as Dr. A told us everything.  

So I guess we start at the beginning?  Our lab results started coming in on Friday night and little by little through the weekend more information was being added to MyChart.  Honestly, it was pretty hard to understand, even when googling it.  We didn't totally know what half of it meant.  But what we could tell, in comparison to his labs in October....his numbers were WILDLY different.  It seemed like a reason for optimism, but neither of us would allow ourselves to go there. 

Wednesday was the day.  Our first nurse came in and took all our vitals.  I mean, if the results were bad, and Andy was on death's door, they wouldn't take vitals - right?  No point - right?  

Then our other nurse- Danielle - came in.  Have we mentioned how much we love Danielle?  Well, we do.  She was making chit chat and being all chipper when we were like - ummm, we just need to know what is going on.  She got a huge smile and said she didn't want to steal Dr. Al's thunder, but the results looked really really good and we were going to have a really really good conversation.  

And - queue tears.  Do you know that feeling when you take a breath when you realizing you have been holding your breath?  That was that moment.  

So Danielle leaves and in comes Dr. Al.  How our conversation started was a bit of a blur, so here we go.  

Success of the Stem Cell Transplant (SCT) is measured in three ways - Labs, Scans, and Biopsys.  

Andy's labs looked good.  Remember, his cancer is measured in proteins and Dr. Al reminded us that Andy had VERY high proteins.  Proteins can hang around for a long time, even if production of the proteins has stopped.  So there could be some level of measurable protein for awhile - several weeks.  But his numbers have drastically reduced since October.  

Additionally Daratumadab is technically a protein (Dara is one of the drugs Andy was on leading up the SCT to reduce his protein....medicine and science is so complicated guys...don't ask me questions!) So - his labs are picking up a protein - could some of it be some of the Dara still?  Potentially.   

My next note doesn't make too much sense - light chains always confuse me...but something about his light chains were high and now they are below normal.  That's good.  They are still seeing some IgG lambda, which makes his SCT a Very Good Partial Response...but because of the other things I've already mentioned (the drastic reduction in protein and the Dara affect) Dr. Al leans more toward a Complete Response!

We are also still waiting on one additional test result and that's MRD. MRD is Minimal Residual Disease.  Ideally, we want Andy to be MRD Negative. MRD-negative in multiple myeloma means that  no minimal residual disease is detected after treatment (meaning a very high level of response).  MRD is a much more sensitive test which first looks at the genetic makeup of Andy's myeloma cells from October.  

Essentially right now, when measuring 10,000 of Andy's cells, there is no detectable myeloma by eye or by microscope.  MRD measures a million cells through genetic testing - so sensitive.  

The chances of Andy being MRD- at day 90(ish) is pretty slim.  Some MRD is not unusual.  The only thing MRD will really tell us is how to proceed in the Maintenance Phase.  

Andy will be taking Revlimid going forward (another drug we were using prior to the SCT).  If he is MRD-, that is all he will take.  If he is MRD+ we will also continue the Dara for awhile.  Again - we want him to be MRD- by the 1 year mark.  

So - why not just take the Dara you ask?  Dara will bring a high risk of infection - lower blood counts - more cautiousness on our end - BUT Andy is young, which make that risk a little lower.  

OK -- are you still with me?  

The other part of Andy's results are the PET Scan.  These test results in MyChart gave me concern because clearly they indicate Andy still has some lesions on his bones.  I did not like that.  BUT - it turns out - Lesions take a LONG time to heal.  The 'stigmata' could be there "forever".  Andy's PET scan did show an elevated PSA - which should require some additional testing, but nothing serious at this point.  

On Tuesday we meet with Dr. A - Oh man!  We haven't seen that guy is forever!  Wait till we tell him what we've been through! (Just kidding....he knows!)  He will be the one to determine what our maintenance program looks like -with the suggestions and encouragement from Dr. Al.  We'll see Dr. A again in 3 months.  Around that time, we will start planning Andy's revaccination.  YAY!  Just in time for winter and being inside!  At the 12 month mark, we will do another biopsy and 'all the staging'.  

We will also do that again at the 2 year mark.  Dr. A was just giddy about some new Myeloma treatments and clinic studies that are soon to become 'clinically actionable'.  There has been SO much progress on understanding this disease and applicable treatments (yay Science and YAY research!!!!)

So.  I think that covers that.  It feels good to have it all typed out.  It feels good to wrap my head around it a little more.  Every day I look at Andy and I just take stock in how well he feels.  Am I oversensitive now every time he says he has a headache?  Or he cuts himself?  Or he says he's tired?  Hell yeah I am.  Am I sorry for that? Nope.  Not at all. I see him now and he looks and acts amazing.  And I will never ever let him go months and months of extreme fatigue and pain ever ever again.  

Warriors - our journey isn't over.  And I'm not closing the blog yet, but I'll tell you this.  We WOULD NOT be here without you.  There are people you love out there that need daily - maybe hourly prayers and intercessions...you can back off from us for now.  We're gonna just coast through maintenance for a million years.  But because your prayers work...if every now and again you could just remember my brave, strong, and oh so inspirational husband - we'd both appreciate it.  And we shall remember you!

Final PS - this got long - if you made it all the way through - great work.  I; however, am not going back to proofread it.  Sorry - you get what you get.  

Just me - Asking for things - Again.

 Hello Prayer Warriors...

Quick update on life - school is over - summer started - life is crazy. Keeping Andy from doing things he's not supposed to is getting harder and harder. He just feels SO. DARN. GOOD!

Thus far I've managed to keep him off our roof to clean the gutters, but I have not been successful in keeping him from sweeping out our garage.

He's still avoiding large crowds, which works relatively well, because we don't like big crowds anyway!

So - the reason for the message is a reminder that today was Andy's PET Scan and tomorrow is the big, official bone marrow biopsy. These are THE TESTS that will help us determine how successful his stem cell transplant was, if there is any remaining cancer, and how we will enter the maintenance phase of his Myeloma journey. We know there will be something for maintenance as this is what will help keep him healthy for years (and years and years, etc), but these are the tests that will determine that.

We're trying to stay distracted. We're trying to stay positive. But I just thought it wouldn't hurt to put one more request out there for some extra prayers - good thoughts - positive juju. Whatever you got...we'll take!

Follow up with Dr. A on Wednesday...and days of avoiding MyChart before then...

See you in a week!

Wednesday, May 21 - Day +62

HI! Did you miss us?

There have been a few times in the last 30 days that I have thought about posting. But I really just enjoyed not thinking about the fact that Andy has cancer. We've just been living life - with a few differences.

I mowed the lawn for the second time in our relationship. Because of the dust, dirt, and pollen that can kick up while mowing the lawn, that has been a big no-no for Andy. He's sad about it. He likes it. But he also just doesn't like being told 'No'.

Andy has started running. He calls it 'ralking' because he runs and walks. But I completed a half marathon doing just that. It's called intervals. He's being really smart about it and is up to 2 miles - running about 1.5 of it. Rock. Star!

Oliver is in full on soccer mode which is great for us because it's outdoors and Andy doesn't feel uncomfortable attending games. Although, Andy did get to watch both kids swim at our home swim meet.

Andy had ice cream! Ice cream has really repulsed him since chemo day. But we were served some ice cream the other day (ok, ok, it had bourbon in it...) and without thinking, he ate it. And enjoyed it!

Andy said no to attending Oliver's first concert and going to the Brewer Game to get one of the Brewer's cribbage boards. But said yes to sitting in the back of Eleanor's induction into the National Honor Society.

Slowly, we are integrating back into society and normalcy.

SO....the reason for today's post - our 60 day check-in. Today kinda hit me over the head and it stung. We've been going through life, not thinking about cancer, being relatively normal and today was our reminder, we are not normal. We are dealing with cancer. And really, just a short time out of a massive surgery.

Today's appointment was at our beloved Moreland Reserve. The receptionist remembered us right away and seemed legit excited to see us. She's great, but I was not excited to be back at the Cancer Center. Immediately, I was hit with that same feeling in my gut. What is that feeling called?

I grew grey hair today. I think I actually saw it. Andy got labs and we got results. And I was terrified. I became terrified of lab results that I didn't even know what they meant or what we wanted them to mean. I was overcome with 'What If'. I prayed. I breathed. I talked. We talked. But I just feel paralyzed and helpless.

Andy's labs were all over - Platelets and White Blood Cells - down. ANC - down, but not significantly. Hg - Up. Potassium and Magnesium, nearly the same. Protein - up by .2 All over. And we didn't know what they meant. So we tried to ignore them and I tried reading Andy. And reading in general (I have started 4 books on this journey...none of them are close to being finished...why do I bother?)

So finally we got called back and met with our nurse - who again, seemed legit excited to see us! She told us how she followed our journey electronically and was thrilled and amazed at how well Andy was doing. It was so fun bragging about Andy and boasting a little about how well he did.

When she left, we looked at each other and shrugged. If the SCT hadn't worked, or our numbers were bad, she wouldn't have been that happy - right?

Then Dr. A came in. He was his typical cheery, happy self. Thrilled at how Andy is doing. Shocked he is working out at all. Some people haven't returned to work at day 60 and Andy is running (sorry, Andy - RALKING 2 miles!).

So we asked our questions - what is going on? Dr. A agrees that it's a little strange to see the platelets drop, but also one of Andy's prescriptions (Bactrim) causes decreased platelets and WBC. Dr. A was very happy with the ANC number and the Hg number. In fact, Dr. A said Hg is one of the primary numbers he is watching. So the fact that increased is great! (See...just when we think we are paying attention to the right numbers!)

AND - drum roll.....Dr. A gave Andy 'permission' to mow the lawn! He said, the main reason we went through all of this is to 'functionally cure' Andy. To let him live a normal life for "15, 20, 30" years. And then, we pull another tool from the toolbox. Dr. A was just giddy about some Myeloma summit that is happening in the EU in the next few weeks and how quickly new treatment options are being discovered.

This was a baseline appointment. Next up - day 100. Then Andy will get a PET Scan (already scheduled) and a bone marrow biopsy to REALLY measure the level of remaining cancer and the effectiveness of the SCT. (Sweet.....we get to go through all these emotions again in 30 days).

Dr. A left.

Andy and I looked at each other. And again, shrugged. You would think, by now, I, we, wouldn't get ourselves all worked up for appointments. What will happen will happen. And we really just need to put a lot of stock in the fact that Andy feels great. He looks great.

But all the same...We are going to go back to pretending and living normal life - We'll see you in 30 days!!

"Monday, April 21"...at that time - Day +32

Monday, Monday. 

Our appointment was at 7 AM...I guess that is what happens after you get a week off - they hit you with 7 AM labs.  

At least our meeting with Doc was at 8 and we wouldn't have to wait as long...until he was running late and we had to wait.  

But we waited with good news.  WBC up to 5.1 from 3.4!  ANC up to 3.0 from 1.73! Platelets were down from 240 to 208.  I don't like it...but I also don't know that it really means anything and we didn't even ask Dr. A about it.  And - he didn't say anything about it - so - let's all move along.  

HgB up to 12.7 from 12.3.   All other numbers stable - and no other numbers discussed by Dr. A.  

BP was up slightly...but I also seem to be the only one that is concerned about that.  (Someone has to worry about here...)

Highlights from our appointment: 

Dr. A is pleased with Andy's progress...but he's still not allowed to go to State Fair - or a Packer's Game.  BUT, he should start getting out into public a little more...we even got clearance to go to a restaurant if we want to.  We are still being overly cautious, because why not.  With the kids and I running around doing essentially everything we need / want we are bringing enough into the house.  Dr. A said Andy's system is ready to fight a bacterial infection, but the lymphocytes (a type of white blood cell (oh heavens...there are TYPES of white blood cells?  This all gets so complicated!)) take a longer time to recover and are used to fight viruses.  Got it?

Dr. A asked Andy how his running went last week - which REALLY gave Andy the boost to get out there.  So today - Andy went out for nearly 2 miles and ran one of them!  Sweaty socks and a sweat rag by the hamper - and they weren't just mine!  Andy was so excited and I am just thrilled for him!!

Our next appointment is scheduled for Day +60 AND (AND AND) we can go to Moorland Reserve for our appointment!!  At Day +60 we'll get a myeloma lab panel just to get a peek at how the look.  

Then next appointment will be Day +100 - in preparation for that appointment we'll get a full work up including bone marrow biopsy and PET Scan (but I already told you all this last week!)

Other home highlights:

Andy tucked Oliver into bed last night!  That means Andy stayed up past 8!  He's gaining his energy little by little every day! 

Andy drank water today and said it "tasted normal".  That ebbs and flows throughout the day - but at least for a moment - it tasted normal!!

AND - I went to Sendiks on Saturday and our absolute favorite beer was in stock (Citra on the Dock from Eagle Park).  I bought a 4 pack (ok, I bought the last 2 4 packs) and Andy and I shared one!  (It's 8% abv...so sharing is the right thing to do!)

So...I imagine things will be relatively quiet on our end for the next few weeks.  I think maybe I need a break from the blog, from cancer, and from updates and let's be honest - you need a break from me.  💕 

"Monday, April 14" Day +25

 Ok, so it isn't really Monday, April 14.  And I'm a day behind writing my update.  We get discharged from Day Hospital and suddenly I can't provide regular updates.  

Monday we had the opportunity to meet with our oncologist, Dr. A.  It's been a hot minute since we've seen him!  

But first we had to stop at floor 2 for labs and then back to floor 4 - Grace Clinic - to wait.  (And wait and wait and wait....ugh).  

Numbers look good and we said again how thankful we were that Aryel had told us the WBC might dip and slow a little, but that was all part of the process!  We were down 3.4 from 3.8 for WBC in the last week and ANC was down 1.73 from 1.86.  Not big dips by any means. 

Platelets are sky rocketing, as projected and are now at 240, which is in the normal range of 150 - 450.  As such, Andy started using his electric toothbrush again and man was he happy!  Small wins people, small wins.  

Hg increased from 11.6 to 12.3. Potassium, Magnesium, Creatinine, Calcium and Protein all basically holding steady.  And weight - weight is holding steady...despite the fact that nothing still sounds good to him, tastes a little off, and he still is in bed by 8....which is before dessert! 

Overall, Dr. A is very happy with Andy's initial response.  He said he spoke to everyone that treated him and they all agreed it appears successful.  We learned it will be 'several months' before we can determine the official response to the transplant, but the current numbers are good and we'll continue to measure the trend.  

Dr. A wants to see us one more time next week, but then feels confident we will get about 1 month off until Day +60.  Remember how excited we were for a day off? What on EARTH are we going to do with a month off?  We have been going to (at least) weekly appointments since October 30. Honestly, there is a part of it that is a little terrifying.  Because with each appointment, we've also received lab updates.  This will be nearly 30 days without lab updates!  

After Day 60...we'll wait until Day 100.  In preparation for the Day 100 appointment Andy will have a bone marrow biopsy, PET Scan, etc (I'm not really sure what etc means...it's just what Dr. A said) to really get a better understanding of that initial response and Andy's myeloma.  From there, we hope to transition into maintenance phase and normal life for a very, very long time.  Sounds good to us, where do we sign up?  

Sometimes I feel myself rushing these next days, weeks, months, to get to that Biopsy.  I still need to remind myself to live in the now, make plans for the future, take a deep breath, and thank God for what it looks like now.   

OH!  And Andy got the all clear to start working out again.  Obviously, he'll need to take it slow, but he gets to start.  Some longer walks, followed by some jogging, and then running!  He's so excited to be able to complain about running! (It's what we runners do - we complain when we can't and we complain when we can...it's complicated!)

Other things Dr. A still wants Andy to follow. While Andy has an immune system now, it's very weak and immature.  So, if he were to catch a virus or infection, it would take him longer to fight it.  And clearly, no trips to TX until we get all our immunizations again!  Things like lunch meat and uncooked eggs (even sunny side up) are off limits and any place with large crowds - Dr. A told Andy he could not go to Coachella.  Or State Fair...which, he acknowledged, wasn't this weekend anyway (such a jokester!)

I think that's enough of my thoughts and notes from the last appointment!  Sorry I rambled!  I went into the office after out appointment and Andy finished the day from his home office.  That night he took Oliver to soccer (because he can just drop him off and not come in contact with anyone), I went for a run, and Eleanor went to swim.  And each minute, each day, we are just slowly falling back into some old routines and it feels oh so good.  

Trifusion Removal - Day +20

Just when we think things can't surprise us - we get surprised!

Andy went in today to get his Trifusion Line taken out.  I packed up my work computer and plenty of snacks, knowing our appointment was at 11 and we would likely be there a few hours.   I knew it wouldn't be as long of an appointment as getting it put in, but I figured it would take some time.  I made sure he packed some snacks too.  He wasn't getting put under, but he'd be hungry after the procedure (it was lunch time!), plus we needed to stay for observation. 

Well.  Long story short.  We were there and back in under 2 hours!  I never even took my computer out or ate any of my snacks OR EVEN LEFT THE ROOM!

That's right.  Our Nurse Practitioner, Matt, came in, numbed the area and talked Andy and I through the entire thing.  A little snip of the original stitches, a little tug (because the catheter is like felt in the vein, so it might need a little wiggling to get loose 😮) and out popped his line!  

'Want to see it?' Matt asked. 

'Can I take a picture?' I asked!  

And we were done.  No stitches, no nothing!  

Just like that - it's over. 

I'm not going to lie.  I wanted to take that thing home and make a Christmas Tree Ornament out of it...but Andy said no.  But like - they just threw it in the garbage!  It's not even biohazard or anything.  

Sooooo, we are both back at work now.  Like nothing ever happened. 

This whole thing has me thinking...In 3 months. 6 months.  12 months.  Are we going to be walking around like nothing ever happened?

Monday, April 7 - Day +18

 Today was a good, and rather surprising day!

Our appointment was at 7:15, which is only 15 minutes earlier than some of our previous appointments, but it may as well have been 15 hours earlier!  But, we made it without issue.  

We've gotten a lot of questions regarding what it means to transfer from Day Hospital to Grace Clinic, especially given that they are both in the same building, but one is on floor 3 and one is on floor 4.  

At Day Hospital, we were buzzed back to our room each day, no waiting in the waiting area.  Our room was a hospital room, complete with a bed, a comfy chair, our own bathroom, a TV, all the medical related items such as the IV poles and vital machines, and a rolly cart with all our own sterile medical supplies.  It was a hospital room that we just visited...during the day.  But it was intended for us to spend significant time in as we had blood drawn, waited for lab results, and received transfusions.  We are SO blessed that Andy's time at Day Hospital was rather uneventful.  Platelet transfusions, which are so common during a SCT, only take about 45 minutes.  A blood transfusion, which is also common, but not needed for us, can take 2 - 3 hours.  Hence, the bed for Andy and TVs.  And comfy chair for me.  

At Grace Clinic, imagine a room like you would be in if you went to Urgent Care.  There are two not comfy chairs, the medical 'table', and the cabinet with all the unknown supplies (because...honestly, have you ever seen a doctor or nurse open one of those cabinets?)  

Clinic 'Views'

We stopped at Floor 2 to get our labs drawn (After we went to floor 4 because we didn't know we needed to go to Floor 2 first - rookies!) and then went to floor 4 to wait to meet with our doctor.  Or, A doctor. 

Clinic VIEWS!  Love our little sky line!

Andy's weight dropped .6...He's going to bed before dessert these days...I'll need to keep him up 15 minutes later to start getting our nightly dose of dessert!  But his BP and Temp look great.  

All labs are doing what they are supposed to be doing - ANC dipping from 2.88 to 1.86 (ew.  I HATE that) but WBC increasing from 3.6 to 3.8.  Platelets doing their thing again - 56 to 113.  SO close to not worrying about internal bleeding, bumps, bruises.  For being fragile little things, they're gaining strength!  Potassium is up from 3.5 to 4.0, but I still made some Avocado cookies today (um, don't judge, they are delicious and a great secret source of K). OH - And Hg climbed back to 11.6 from 11.1.  

We met with our nurse - Sally.  She said things like 'Amazing' and 'Great Job' and that she spoke with Dr. Akhtar and he is 'pretty pleased'.   Andy continues to not have any 'side effects' except for the fatigue.  He mentioned his daytime naps have significantly decreased, but he still needs them, along with an early bedtime.  She was thrilled with this and said it was not surprising because Andy is still very much in the recovery stage.  

She then dropped the bomb on us that we would NOT be seeing a doctor this time and that we weren't due back until NEXT MONDAY.  Mind.  Blown!! You're telling me we are just going to be little normal people from now until NEXT. MONDAY?!  But what if our numbers drop in the next week?  How will we know without daily, or at least every other day, labs?

Honestly, I think at this point we are just in so much need of a break, we didn't even dwell on those questions yet.  

We ALSO found out that Andy has an appointment on Wednesday to get his Trifusion Catheter taken out!  And this my friends, is what brought me to tears today.  He may be bald.  He may have lost some weight.  He may have some weird taste in his mouth from the chemo.  But that Trifusion Catheter.  That's the daily reminder of all this bullshit.  He can't shower without wrapping it with saran wrap and Tegaderm.  He can't sleep on his stomach.  We worry about the dog jumping on him.  We are all cautious when we hug him.  And every time he moves those little caps are the reminder that he is receiving daily blood draws and is in perpetual need of possibly needing a transfusion. And that mother f--- (OK, I won't say it, I know my mom is reading :-) )is coming out!!!!

The other thing this all means, as we start to readjust to normalcy, is I'm going to head back into the office.  I've been working from home for the last three weeks to 1) ensure I'm as quarantined as possible as Andy's primary care giver and 2) to be home should Andy need anything during the day - should he develop a fever, should he get light headed, should he get sick.  While all of these are still possibilities, they are not probabilities given this stage of the transplant and given his progress.  Going back to work terrifies me and exhausts me.  Here, I know Andy is safe.  Here, I can check on him if he's been sleeping too long.  Here, I can disinfect and do laundry during lunch.  Here I can be home at 5 to run the house, keep kids on schedule, and not go insane.  Some of that isn't needed anymore - the daily changing of sheets, towels, etc.  The daily disinfecting.  Some of that, Andy can help out with now that he doesn't sleep for 3 hours during the day.  And honestly, some of that, the kids will need to help with.  We've been an army for months now, we just need to learn some new roles.  And honestly, going back to work is one of the greatest steps toward 'normalcy'.  It just seems really big to wrap my head around right now.  And honestly, after 3 weeks of leggings, the thought of button pants makes me sad.  

OK - So here's what we are going to do - we are going to NOT provide an update tomorrow.  Because tomorrow, the kids will go to school.  I will go to the office.  Andy will work from home.  And we are going to take our first step back to real life (and NO ONE wants to read about our real life!), but, don't fear, I'll be sure to provide an update on Wednesday when that stupid port comes out!

Sunday, April 6 - Day +18

 Well hello there! It's been a few days!  A much needed break for everyone!

Friday we had off and it was glorious to not go to the hospital.  Life felt a teensy, tiny normal.  And so to ward off any sense of normalcy...we decided to shave Andy's head.  

In the hospital, Andy noticed his hair was starting to fall out in large clumps.  This did not change as the week went on.  Of course, in the Bach house, you can't just shave your head...you need to have some fun with it.  So each kid took a crack at shaving some of dad's head and mom finished if off.  

Clearly, I'm biased, but dang if he doesn't look SO HANDSOME!  I'm sad he has to be bald because chemo made his hair fall out and cancer made him need chemo...but I like the look!  

Saturday we had our appointment at the Day Hospital.  WBC took a teeny dip (thank God Aryel told us they might do this!) But dang if those platelets aren't taking off!!  We were SO excited to see that!  More than double!  Hg is still being a little stubborn, and we needed a Potassium supplement as that is still just at threshold.  But for the most part, everyone at Day Hospital is really pleased.  So we left.  We just kind of walked out.  And, like, maybe?  Maybe we aren't ever going back.  It felt strange.  It felt a little anti-climatic.  It felt good.  

We have today off again and Monday we head back to the same building, but to floor 4, Grace Clinic.  We've moved from Hospital to Clinic.  Which, in all actuality, doesn't mean a ton, but it's different and it's a graduation of sorts.  

We still really wrestle with - what's next?  How long do we keep going to Grace Clinic?  Are we ever considered 'done'?  Andy isn't neutropenic anymore, but when can I stop worrying on windy days that Andy's going to catch something.  Can he start eating lunch meat?  They don't want him digging in the dirt for several months, so what about everything else?  

We try to just 'go with the flow' and still have to remind ourselves to just take each day as it comes.  Maybe avoid the lunchmeat and eggs over easy for a little while longer.  We are only Day +18 from turning Andy's entire system upside down, so in the grand scheme of things, he's doing pretty freaking amazing!

Thursday, April 3 - Day +14

 Well, if you rely on the blog for your Bach Updates - I'm sorry!  I forgot to hit publish on the post.  So, now you get two today!  

Back to the Day Hospital today and, luckily, our trips there are becoming more and more uneventful.  We won't complain about going to the hospital, because the last time we complained, we ended up at inpatient...but if I've said it once, I've said it a million times. We are tired.  We are tired of driving to the hospital every damn day.  We are tired of not really knowing what is next.  

Luckily, Andy's numbers are cooperating!  

Potassium was still a little low and required a supplement - two pills - NBD (says the girl that doesn't have to swallow two GIANT horse pills!)

WBC were up to 3.9 from 3.6.  Not as big of a jump as we (Andy and Dana) would like to see, but doctors seemed impressed with the progress - and just look....almost to the green!!

Hg dipped from 11.9 to 11.6, but as our nurse wrote the number on the board, she said 'Looks good'.  So...I guess we shouldn't be concerned.

But, our biggest deal was platelets - this number went from 21 to 23.  Now, this isn't the jump we want to see, we want to see this guy double and triple.  BUT, what did happen is that Andy did not receive a transfusion of platelets yesterday and STILL that number increased, which means Andy is making platelets on his own!  

And, this means, we didn't need a transfusion today (remember that 20 is our threshold) AND....guess what else?!?!

We. Aren't. Going. To. The. Hospital. TOMORROW!!!!!! NO HOSPITAL FOR US!  For 17 days we have made the trip to Froedtert and tomorrow, we aren't going!

OK.  I just need to pause here. 17 days, is NOT that long in the grand scheme of things.  I can think of several people that have made that trip to CHILDREN'S for a substantially longer period than 17 days.  Children's!  This falls into the category that we if threw all our problems in a pile, you are likely to pick your own problems back.  And I do really want to acknowledge these brave warriors.

And now we can have our own little dance party for not going to Froedtert tomorrow.   For working a full-day with a real live lunch break!

We'll head back to Froedtert on Saturday (and hopefully not Sunday).  Then Monday we go to the Grace Clinic (which is just not the Day hospital) for labs and a meeting with a doctor.  Not our doctor, like we originally thought...which has us still a little frustrated and asking, what next?  It shows us just how fluid this process is and how it could change in an instant.  No one will really commit to 'what's next'.  

This is a big challenge for me.  But like each step of this journey, we let ourselves feel the frustration and then settle into the here and now and what we know.  

We know Andy's numbers are doing what they should. 

We know we don't have to go to the hospital tomorrow. 

We know we are going to Grace Clinic on Monday.  

And we know these are all good things.  

OH!  And thanks for all the tips on how to stop my hands from cracking and bleeding!  I'll be sure to lather up tonight and put on some gloves!  You guys are the best!

 

Wednesday, April 2 - Day +13

 YAY!  It's funny, in this journey, the things that make you excited.  Going back to the day hospital and seeing our people made us so happy today!  

First familiar face was one of our nurses from last week...she kept referring to Andy's time in the hospital as his time 'in the big house'.  

Overall, things are looking really good for Andy.  

His Potassium and Magnesium are a little lower and he ended up receiving a Potassium supplement - But creatinine actually increased.  As did calcium.  

Hg increased all on its own from 10.7 to 11.9 and that made us REALLY happy.  

Platelets went from 13 to 21, which is great, but also a bit of a false positive because he got the platelet transfusion yesterday.  This is the number we are kind of watching right now.  We need him to be able to make platelets on his own, at a decent rate to really get discharged from day hospital.  So while we are always praying for WBC/ ANC...tonight say a little prayer for his platelets!

ANC is at 2.66 and WBC are at 3.6.  I mean.  We basically could go to a rave with these numbers.  :-) But seriously. Let's all just have a little dance party to celebrate this climb.  Andy's immune system is still crap, but at least he has some soldiers to TRY and fight something that comes his way!

We met with one of our new favs - Areyl - who told us some of what I told you above and also that we COULD see a dip in the WBC / ANC as Andy's body stabilizes with the decreasing effects from the Nuelasta injections (which last for about 14 days...even though, I feel like it's been way more than 14 days since our last Nuelasta injection?).  However, this is VERY good news for us to hear because if we saw those number decrease we would be devastated.  

We tried asking - what next - but so much of that answer is still - It Depends.  If this, then that.  If that, then this....

So everything is still relatively clear as mud...hopefully, maybe, we'll know more tomorrow!

OH!  And one more important fact of the day.  Andy took about a 30 minute rest over his lunch break and he was up with us until about 8 PM, without looking like he wanted to crawl out of his skin.  Baby steps...but HUGE steps!  

Also - my hands are literally cracked and bleeding from washing them thoroughly all the time.  How do doctors and nurses do this? 

Tuesday, April 1 - Day +12

 

Hard to tell - but that temp says 98.5!

No fooling - We. Are. Home!  

Things happen so slow at a hospital - until they happen fast!  At one point we were told we could go home tomorrow - then it was tonight - and then it was noon (Clearly - did NOT get home at noon) and we were not going to get our hopes up until we were walking out the doors, because everyone had something different to say.  

Here's what I'm curious about - if we did this entire process inpatient, would anyone ever come talk to us about our labs?  Because transferring to inpatient - no one ever came to talk to us about our labs (that would routinely get drawn around midnight!)

Regardless - Andy's WBC and ANC continue to climb.  .9 to 2.0 and .64 to 1.54 respectively.  Today's doctor was very happy with that progress but was quick to remind us that just because we had cells to fight infection, didn't mean we had an immune system yet.  That would take months.  It just means that IF we were exposed to something (when....) we would have cells that could actually fight the infection.  A win is a win!

Andy's Hg, however, continues to decrease - 13.1 to 11.2 to 10.7.  Today's doctor said that's still relatively normal that after the WBC/ANC starts to increase, the Hg lags behind.  Platelets too.  They went from 19 to 13 and because we were going to go home, we ended up getting another bag of platelets before we left.  

We also received another round our antibiotics, although, all bacterial test results came back negative.  

When I got to the hospital today Andy's temperature was 99.2 and when we left it was 98.7.  Yay.  

The kids were beyond thrilled to see their dad AT HOME!  Watching those hugs are moments that will be burned into my memory.  

It's safe to say, everyone is oging to sleep good tonight.  Andy has more energy each day, but after a busy day with NO NAPS, he has his eyes closed sitting on the couch next to me.  What a great sentence - sitting on the couch next to me.  And I think it's safe to say, he will sleep the best tonight in his own bed with no one disturbing him for vitals!  

We head back to day clinic tomorrow morning bright and early.   Will our nurses have missed us?  Did they know we were gone?  And really...what happens next?  

Shock is a strange thing.  Because that is precisely what happened on Sunday night.  As much as they prepared us for potential inpatient, I went into shock.  And you guys stepped up.  The check-ins.  The messages.  The calls.  The texts.  I felt like we could make it because I could give up and just be carried for a few days.  All of you just a gentle hand on our backs, pushing us to keep going forward, even when we weren't moving.   I love you for that.  And now that we are all home together, under the same roof, I feel a new sense of exhaustion.  But one that will be replenished more easily and one that is ready to fight another day tomorrow!  (Ummm, but don't go far - our battle isn't over yet!)  

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.