"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!)