Friday, June 27, 2025

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.  

Wednesday, June 18, 2025

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!

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...