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!