Saturday, December 28, 2024

Trucking Through Cycle 2

Sorry for the late post!  Christmas can be quite the distraction - even a distraction from cancer!

Regardless - Thursday afternoon we took our weekly trip to Moorland Reserve.  It was very quite the day after Christmas in the middle of the afternoon.  Andy was in his blood draw for about one minute!  

THEN - we got me signed up for Andy's MyChart account, which means I will also receive all notifications now when test results are available - Yippie!

And just in time...I received my first alert very quickly:

Hg - 12 - Up from 11.3 (and this is why we don't worry about small fluctuations!)

Platelets - 227 - Up from 199 

ANC - 2.7 - Down from 4.0 (I don't love it...but it's still higher than our threshold of 1.0...)  

Total protein 7.0 - down from 7.7 

Also - we got a few late labs last week that I failed to update - 

IgG - Continues to drop from 2.94 to 1.59 (This is a very important number that we want to be 0 - or as close to it as possible). 

Our Kappa / Lambda Light Chain Ratio increased to .49.  I still don't understand light chain individual numbers, and have that as a note for next week's Dr. Al visit.  I know they are related to proteins and the Kappa and the Lambda make the total protein.  Andy's cancer only allows him to make partial proteins...and partial proteins floating around in the blood stream is not good - they take up space for the good things we want that then can't create because they don't have room.  The closer that ratio is to 1 (I THINK) the better it is because it means less partial proteins floating around.  BUT over all the IgG number and overall protein numbers are down...so....I guess that's all good.  One thing I'll say about my previous experience with cancer - Brain Cancer was FAR easier to understand. Orrrrr, maybe it was the lack of access to all these lab results 😬

So - overall, all our numbers looked good and we prepared ourselves for our treatment.  

We were called back into the infusion area and waited for our Dara to warm up.  Andy gets a week off of the Velcade, per our medication schedule, so just one injection this week. 

He will also get a week off of the oral medication, Revlimid, starting tomorrow, as scheduled, per our treatment schedule.  So just one medication for the next few days until we see Dr. Al on Thursday 01/02.  I'm assuming that has to help his total ANC number?  

We went through all the typical reaction / side effect questions with the nurse, none of our responses have changed and none of them are concerning on any level.  We like to keep it that way. 

Andy received his treatment like a champ and we were out the door!  As we both had off that day, we ordered some lunch, cleaned up the Christmas mess and then met some family and friends to walk around the zoo and look at some Christmas lights.  You would never have known that earlier in the day we were at the cancer center receiving life saving medications.  

So - in summary, cancer is weird.  Andy is a rock star.  Christmas is chaotic!  


Thursday, December 19, 2024

Cycle 2 - Day 15

 I think my math is correct - Day 15 - right? Regardless - today we went to Moorland Reserve for our treatment.  

And guess what - spoiler - it was another totally anticlimactic day!

The cancer center was very busy today!  Of course, we were the youngest people there.  

The labs came back very quickly - 

Hg - 11.3 (down from 11.5...but I promised myself two weeks ago that I wouldn't worry about small fluctuations like .2.  So.  I'm holding myself to that...)

Platelets - 199 (Up from 192...I don't worry about small changes down, but I do get excited about small changes up!)

ANC - 4.0 (Up from 3.0!!)  

Total protein held steady at 7.7 and Calcium was up .3 to 7.6. 

I just don't get it.  Why in cycle one did 2 days of the Revlimid tank his system, but now in cycle two his numbers are actually improving?  I mean - this has to be good, right?  

While we waited for our treatment a little old man came and sat next to Andy.  He was so adorable as he looked over at Andy and said, "What are you in for?".  Andy explained that he had Multiple Myeloma and his new friend (I'll withhold his name to protect the innocent) shared his diagnosis with us.  Then he looked at Andy - "You're kinda young for Multiple Myeloma, aren't you?"  Yup....we feel the same way!  We explained that we were 'new here' and he said we were in the best hands.  He's been in remission 4 times.  Sure, he clarified, that means he's had 3 recurrences, but I love the way he focused instead on the positive.  He asked about our family and we joked about teenagers.  We were called in back for our treatment and we parted from our new friend, shaking hands, exchanging blessings, and luck.  You guys, call me crazy, but I really feel like that little old man, so sweet, so kinda, was some type of Angel sent to talk to us.  He just gave that feeling.  

In the back, we selected our room and got comfortable.  Andy's vitals were good, so we just needed to wait for the pharmacist to release the two cocktails and one of them to warm up to room temperature.  When the nurse came back to us she mentioned that one of the meds weren't released...she indicated that was strange because she felt Andy's numbers looked great.  It ended up being just some glitch, and he was getting both meds, but it was really nice to just hear her say that his numbers looked great.  

Then we were asked ALL the questions to see if he's having any type of side effects.  Each question was greeted with a 'No' or a 'Fine' or a 'Good'. She complimented Andy for making her job so easy, mentioned it's not usually that easy, and she's so happy to hear that he's doing so well.  She joked, "so...why are you even here".  Yeah, we don't want to be here either.  But again, it was just nice to have someone so 'excited' that he is responding so well. 

We got both injections without issue.  And when I say we, let's remember that it's just Andy (incase there was any confusion).  You guys, he's so amazing.  Another week, another two injections.  One stings a little and is a slow push of medication into his stomach.  Medication that he can literally feel going into his body.  Andy has not complained once.  He hasn't really even pouted.  He just takes his medications like a champ and moves along.  My heart aches that he has to go through this, but it bursts with pride.  Yes, pride.  I'm so proud of him and how he's handling everything.  

We packed our stuff up and off we went.  The snow was starting to fall as we left the hospital and it felt like we were walking through a snow globe.  Then Andy went home to work and I went into the office.  I don't even stay home with him all day anymore to ensure he handles the medication OK.  We're slowly adjusting to this 'new normal'.  We're slowly accepting.  We slowly transitioning.   We don't want it.  We didn't ask for it.  But here we are and we need to learn how to live with it.  Because we hear it doesn't ever fully go away and so we plan on living with it for a long, long, long time.  

Friday, December 13, 2024

Cycle 2 - Day 8

 Yesterday we went to MR for our weekly labs and cocktail.  

As a reminder, new in the past week was the reintroduction of the Revlimid oral medication - the medication we believe was the main cause of Andy's plummeting numbers during Cycle 1.  

Today's labs were much better!

Hg = 11.5 (UP from 10.9)

Platelets = 192 (Down from 278)

ANC = 3.0 (UP from 2.5)

Total Protein = 7.7 (Down from 8.6)

Calcium 7.3 (Down from 8.8)

Calcium and Platelets are in red because we don't necessarily want those numbers to go down.  We were warned about the Calcium after the Zometa shot last week. Which...kinda confuses me because I thought Zolmeta was supposed to help with bone weakness...but...as I stated last week, I just listen to the doctors.  (But if any of my medical friends can make sense of that for me - thanks!)

So - we assumed we were going to get treatment!  

We got taken into the Cancer Infusion area and were given the extremely large corner room.  Despite the frigid temperatures, it as gorgeous...but Andy does like having a tv in the room.  

The nurse came in, took Andy's vitals, which also were reasonably good.  

The other nurse came in, ran through ALL the questions regarding potential side effects, none of which Andy was experiencing, and then said nurse said she was going to the pharmacy to get Andy's medications and she would be right back.  

I was busy coordinating Christmas presents with aunts and grandparents and getting some last minute gifts ordered.  The next thing I knew, the nurse was back and was giving Andy his shots.  

And that was it.  We were done.  

Andy and I walked to the car in a bit of a trance.  This cancer journey is SO weird.  When his numbers are bad, we talk to nurses and they assure us everything is OK and it's part of the journey.  We aren't happy his numbers are bad and we feel really sad.  

When his numbers are good....we don't' really talk to anyone.  It's just this little routine process.  And it's actually never happened before so we didn't really know how to respond.  I mean...happy.  That's how we need to respond, but it's just odd.  No matter how great things are...they still feel weird!

Last night Andy slept relatively well.  Usually on days of treatment the steroids keep in restless and in and out of sleep.  

So.  That's where we are.  Another day on our cancer journey....

Thursday, December 5, 2024

Monthly Check-In

We've had cancer long enough to require a monthly check-in.  Today was that day.  

We drove up to the Menomonee Falls clinic for labs, consult, and treatment.  

Labs first - Andy was taken back fairly quickly and, just like yesterday, received his results via MyChart relatively quickly.   

His Hg was 10.9 - up from 10.5 YESTERDAY.  

Platelet - 278 - up from 260 YESTERDAY.

ANC - 2.5 - up from 2.1 YESTERDAY.

Small changes, but we were still impressed.  

Then we met with Dr. Al.  He asked how Andy was feeling - answer, great.  He asked how our appointment with Dr. A went - answer, great.  He asked if Dr. A had gone over the cancer numbers. Um.  Maybe?  Let's go over them again.  

Dr. Al acknowledged MyChart has an overwhelming amount of numbers, but the numbers we are paying attention to are the Kappa, Lambda, Kappa Lambda ratio and the Lambda Monoglobin Protein (IgG).  The proteins, which these 5 things measure, are truly a result of the cancer.  The other numbers we live and die by (Hg, Platelet, ANC) are mostly treatment related and will fluctuate accordingly.  Dr. Al confirmed we would like the IgG number to be close to 0.  The drop from 7.8 to 2.94 was 'quite remarkable' and we want to see that continue to decrease.  

Dr. Al told us to restart the Revlimid cycle tomorrow.  He doesn't feel like we will see the same massive drop we did last time because Andy's numbers are so much higher then where we were starting from last time.  His body had a lot of work to do to get it to where we are today.  

We also introduced another monthly injection to the routine: Zometa.  This injection helps with the bone weakening caused by the MM (the lesions in his bones).  Apparently it can have some weird jaw side effects and so Andy needs to disclose to his dentist that he is receiving Zometa....strange, but anyway. 

Dr. Al said that we'll do cycle 2 the same as cycle 1, with the intention to keep going with the Revlimid.  And then at cycle 3 we'll do dara every other week - eventually getting this to monthly.  Dr. Al said, I really hope to not hear from the nurses about you this cycle, but I think it's going to be better.  He then said, Happy Holidays and I'll see you in January. 

Sure there was a little more, but none of it relevant and most it surrounding other medications and vitamins to be taking, a few side effects, and other misc. cancer chit chat.  But Dr. Al smiled the entire time we were talking.  Never seemed panicked. Never seemed concerned. (well, you know what I mean).  And off he went.  

Then we went over for our treatments (which took a substantially long time and I spent a considerable amount of time watching Tik Tok reels as I didn't bring anything else).  And off we went.  

I learned something today friends.  I need to stay the F off MyChart.  I have a doctor...I mean, Andy has a doctor.  Our treatment is in HIS hands.  If HE gets a lab result HE doesn't like.  Then HE will make an adjustment.  HE isn't going to let Andy's numbers get out of control and wait for us to come in. HE will address it. WE have options.  if one of those cancer numbers moves the wrong way by .1 or something.  I will wait to see what Dr. Al has to say.  Not Google.  Not even the MM Research Foundation website.  I'm putting my faith in God, but I absolutely need to also put my faith in our doctors.  I cannot let my high highs and low lows rule my life.  Today I have a relatively healthy husband by my side.  He's kicking cancer's ass like a ROCK STAR!  We will go to treatments - we may get them, we may not.  But we will not worry until Dr. Al tells us it's time to worry.  

I wish we could see Dr. Al and Dr. A every week.  They are SO knowledgeable and yet so personable.  So compassionate.  I feel so comfortable with them.  Knowing we are in their hands.  Sure.  Andy's just another patient to them.  But their goal is to get him better.  To get him in remission.  It's not personal. It's business.  But it's their business and they want to succeed.  My faith in the Lord, requires my faith in all things.  

This week has been exhausting.  I am exhausted.  Andy is exhausted.  You realize what a toll you are taking on your inner health when you spend days holding your breath and bottling anxiety over the unknown.  

Tonight we breath.  I'll keep waiting for my Thursday appointments.  I'll keep waiting for those labs.  But I'm also learning to not put my everything in those.  Just...if you could remind me of this going into and coming out of next Thursday's appointment, that would be great 😆

Also.  My nephew told me my blog updates need more pictures.  Let's see how I can do!

What other kind of soap is there, if not health soap?

We waited a long time for treatment and got stir crazy!

Waiting and watching each time feet walked by.  Sorry, CB, you asked for pictures!

Surprise!  Zolmeta is administered through an IV.  That was a fun little thing to throw in last minute!


Wednesday, December 4, 2024

Stem Cell Transplant Consult

 Today was a good day. 

I'm learning that tomorrow is a new day.  But I'm also learning that if I'm going to feel the lowest of lows, I absolutely MUST allow myself to feel some highs too.  

So today we went to Moorland Reserve to meet with a new member of The A Team (That's THE Andy Team...in case you didn't realize).  

But first we needed labs.  

Nearly as soon as Andy sat down, he received a notification on MyChart regarding his results. Oh. side note...do you not know about MyChart?  It's this wonderfully horrible little app where you can access all of your medical information, sometimes before your doctor even reviews it or meets with you to discuss.  So you read about weird words and then google search them, only to find out something horrible, only to find out that internet only provides you with horrible, worst case scenarios.  It's the biggest blessing and biggest curse of modern medicine...but I digress.  

We opened the MyChart App and looked at Andy's numbers.  

Last week, remember, we just got the Daratumumab.  However, Andy's numbers were as follows:

Hg = 10.5 (up from 9.4 last week)

Platelet = 260 (up from 244 last week)

ANC = 2.1 (up 1.2 from last week)

WOW.  We took this as a great sign.  Hg 10.5 - double digits!!  

We got called in back and first met with our nurse, Danielle.  She was super nice and very friendly.  I assumed she HAD to be hiding something from us.  We were about to get terrible news - spoiler, we did not receive terrible news.  She asked Andy to walk her through how he got to where we are today.  His symptoms, his reactions, etc.  

She was SHOCKED that Andy was even upright on the day he was admitted to the hospital was a 5.1 Hg count.  She was NOT SHOCKED that Andy's numbers tanked after the first dose of Revlimid, Daratumumab, Velcade cocktail.  She told us that Andy was initially put on a high does of Revlimid, but sometimes she's seen prescriptions as low as 5 mg.  She assured us there were a lot of options there, but not surprised at all he was not currently taking the medication.  (It's so awesome when medical professionals are not shocked by your response to medication.  Because as a commoner, in case you forgot, we were, indeed shocked.)

So, basically, other than the Cancer, Andy is healthy as a horse.  Andy said he'd prefer to NOT have the cancer.  Her response was very matter of fact.  "We'll get you there.".  

No sad eyes.  No frowny face.  Just fact.  "We'll get you there."  YES PLEASE.  Danielle left and Andy and I stared at each other, blinking back tears and excitement.  I lost - surprise surprise and started crying.  It just felt like the first actual reassuring conversation we've had in almost a month.  A month of reading MyChart results, talking to nurses (God love them) that are administering chemo.  It felt like something.  

Then Dr. A walked in - Yes, our medical team is comprised of Dr. A and Dr. A for patient A.  We try and keep things simple for you as you follow along.  So Dr. A is our surgeon for the stem cell transplant and Dr. Al is the oncologist - got it?

Dr. A asked a very basic question...Do you understand what Multiple Myeloma is?  Well....kinda?  We tried explaining it.  Eh....we got a few parts right.  But he was going to explain it to us.  First.  He needed to find his favorite pen.  I love this guy already.  

Turns out he couldn't find his favorite pen, but he did find a sharpie.  Another favorite of mine!  He started drawing what multiple myeloma is...and I started writing everything he said.    

Skip the section below if you don't really care to know my version of Dr. A's drawing.

Wednesday, November 27, 2024

Infusion Day

My life - our life - is currently measured week to week. Although we normally treat on Thursdays, with the Thanksgiving Holiday tomorrow, we made the journey to Froedtert this afternoon.

Also - because our appointment was in the middle of the day, I worked in the office this morning and met Andy at his appointment.  I got there just as he was heading back for labs.  

We waited for what seemed like an oddly long time to be called back to the infusion center after labs.  
It really wasn't THAT long of a wait.  

Today felt weird.  I wasn't nervous.  I wasn't scared.  I was just there.  And for the most part - Andy felt the same.  

The infusion center is a little busier in the afternoon, but we got settled in our 'room' and got Andy's vitals.  
BP holding steady, while still on the high end.  
Pulse Ox looking great
Temperature at 98.2 (Up .1 from last week...ok, ok, in the grand scheme of things, I can't focus on .1 - ha!)

I ran to the restroom real quick before any nurses came in and when I got back, Andy had his labs pulled up on MyChart.  As he rattled off numbers, I quickly looked through our notes to remember what was good and what wasn't. 

Hg (Hemoglobin) = 9.4  (Up .1 from last week)
Platelet = 244 (This number we need above 5o - or 100, depending on who you ask and it's up 154 from last week!)
ANC (white blood cell) = 1.2 (Need this number to be 1.0 and up 1 since last week!)

All this seemed really positive, but we also aren't immune to surprises, so we tried not to get our hopes up. 

Our nurse, Allie, came in and told us we were scheduled for one injection, but she had some questions first.  

Wait - us first - we have questions too!  Why just one shot?  And which one?

It turned out we were only scheduled for the Dara injection today.  But since we didn't get Velcade last week, why weren't we going to get it this week?  

She went through all her questions for Andy, basically determining if he was having any side effects to his treatments - spoiler, he's not.  
She placed a call into Dr. Al, who confirmed, just the Dara treatment today.  He did first ask her all of Andy's numbers, but then confirmed, just Dara.  

We THINK this is the cycle for Velcade - 3 weeks on and 1 week off. And even if we didn't get treatment last week, we still would skip this week.  

We see Dr. Al next Thursday, so we'll be sure to get clarification that.  We also need to figure out what the heck we are doing about the Revlimid.  

So.  That was out appointment today.   We feel good that we have more drugs in the system that are fighting cancer than are just helping increase white blood cell counts.  But I do have to offer up a prayer of Thanksgiving because that shot did EXACTLY what it was supposed to do!

And now...we start thinking about next week... 

Thursday, November 21, 2024

Day 22...


 ...Wow.  

Let that sink in for a minute.  We are only on day 22 of this journey.   

I couldn't label today's post Dara Day 3, because, cutting right to the chase, we did NOT receive our Dara today.  Or our Velcade for that matter.  

Thursday, November 14, 2024

Dara Day 2

So yesterday Andy finally received his Revlimid.  Insurance...oy.  
We were very excited to add the fourth and final medication to our Quad treatment.  
He took it down and no problems - YAY!  

This morning we had our weekly lab appointment, along with the Daratumumab and Velcade.  Walking into the Cancer Center today was so different than last week.  We felt more confident and comfortable.  Not like the scared newbies we were last week.  We were cancer kickin' maniacs now!

Our nurse came by and I even asked for coffee while we were waiting this time.  She apologized that one of the systems were down and so they were still waiting on some of the blood work to ensure we could move forward with treatment.  We asked what Andy's blood count was and she explained that was the one lab they were waiting on.  All other numbers looked good - some were still low, but steady.  So that was good.  

She explained, while writing on the white board, because she was that great and that thorough, that we were waiting on the ANC (Absolute Neutrophil Count) and the Platelet count.  These two numbers could actually prevent us from receiving treatments.  ANC needed to be above 1000 and Platelets above 50000.
We asked about Hemoglobin and she said they watch it, but not as much as these other two numbers.  She was happy to hear Andy was feeling well with more energy, not out of breath, and no weird bruising.  All good signs.  

We watched some Property Brothers, talked about Christmas shopping, and I sipped my coffee.  



Our nurse came over.  Well....she started.  
It's NEVER good when they start with well. 
"I'm glad we went through all those numbers, because your labs aren't where we want them to be.  I have a page into Dr. A."

Damn it.  There goes my stomach into my feet again.  I look at Andy and he looks the way I feel.  
His ANC was 700 and Platelets were at 48k - just south of the 50k, but still south. We asked what the Hemoglobin numbers were at: 9.2.  Damn it - also decreased from last week's 10.   At that moment, Dr. A called and off she went.  I couldn't help it.  I burst into tears.  We did SO well last week.  What happened?  And why weren't things working anymore?  

She came back a short time later - Dr. Al wanted to proceed with the Velcade and the Dara, but Andy should stop taking the Revlimir effective immediately and until next week when we test the numbers again.  Right now, we have three very aggressive drugs fighting in Andy's system.  All three of those drugs hit the ANC and platelets.   Perhaps a little too aggressively.  So we need to pause.  She continued that Andy is now at a much higher risk for infection and needs to be very careful around anyone, and cannot be around anyone that is not feeling well.  He is also more susceptible to bleeding so watch for any unusual bleeding and bruising and call his doctor immediately if anything changes.  We just kind of nodded along.  She dismissed herself to go get the Dara (which is stored cold and needs to warm up before administered...fun fact).  

We sat and cried.  WTF.  These appointments are so much better when things are improving.  But then we pulled ourself up - this is OK.  The nurse didn't seem alarmed.  No one seemed alarmed and we were still getting treatment.  Andy is still fighting cancer like a rock star.  

She came back and I couldn't help ask her, although I'm not sure how I worded it.  Basically, I started, these numbers are going to fluctuate with treatment, right?  This isn't bad, right?  Annnnnddd I burst into tears.  Again, another medical professional looked at us 'like we were crazy' and I mean that in the nicest way possible.  Of course it's not bad!  And it doesn't mean the treatment isn't working!  Cancer is a wild ride and we just need to figure out how we are going to react to everything and what the best treatment plan is - FOR. ANDY.  One of the side effects of all three of the drugs are lower ANC numbers, and lower platelet numbers.  This isn't necessarily surprising.  And those numbers could be lower next week - maybe higher.  And maybe we'll skip a treatment sometime.  It doesn't mean anything.  

That's the thing about cancer, she said.  You can't be a planner.  You roll with the punches.  And it's a roller coaster.  Those numbers will be up and they will be down.  And then they'll be down and then they'll be up.  She said she's been working in Oncology for 8 years and she's seen it happen.  She acknowledged how overwhelming it is, starting this journey.  Learning all the lingo.  Understanding what it all means.  She assured us we have several levers we can still push and pull and right now, we have a plan - take the 2 injections, stop the oral.  And next week, we re-evaluate and maybe make a new plan.  We talked about how far treatments have come and all the things they are still learning.  Again, we are 2 weeks into this journey.  

Andy received both injections and she bid us farewell.  We walked out, hand and hand, still feeling a bit defeated.  

I came home and lost my shit.  I'm tired.  I'm tired of this for Andy.  For our family.  I'm over it.  And I laid on the bottom for a minute.  And Andy hugged me.  And let me sob while he was strong.  And now I'm picking myself up.  

We are 2 weeks into this journey.  We haven't even scratched the surface of treatment and Andy's strong and otherwise healthy.  He's fighting SO. HARD.  This isn't even a setback.  It's a side effect and one we can manage.  I've looked back on some of your encouraging messages and have reminded myself how strong and mighty our community is.  While today's labs weren't what we wanted - they weren't bad either.  And so we keep fighting and we keep winning.  And we keep praying.  Maybe in one week we became too confident that our journey would be an easy one with sunshine and rainbows and singing unicorns.  'Tis not the case with cancer.  No matter how successful the outcome.  

I'm a planner.  I read the last chapter of the book - even though I'll lie and say I didn't.  I'll find away to know the ending.  I rush through a project just so I can say it's done.  I'm always interested in the end result.  And life doesn't work like that.  And cancer really doesn't work like that. One day at a time.  One experience at a time.  And today - one breath at a time.    

So that's our update.  Not bad.  Not good.  Just cancer.  

Thursday, November 7, 2024

Dara Day

Just a quick little update...Today was our first treatment of Daratumumab.  This is the 4th drug of the Quad Treatment.  Again, I can’t necessarily call it chemo, it’s just our cancer drug.  

Dara can produce infusion reactions, similar to that of an allergic reaction.  But I was wrong with yesterday’s blog post.  Today we actually still received the treatment subcutaneously but then we were observed for 2 full hours to see how he reacted.

Guess what?  Andy responded like a champ!!!  No reaction, no nothing!  Yyyyaaaayyyy!!!  

And now we just have one more super drug charging through his body, killing cancer.  All while we got some work done.  Have I mentioned to you how proud I am of Andy?? 

And - we got a few pictures today to brighten up this blog!!

The Cancer Center a Froedtert is so peaceful!  If you can squint through the trees, maybe you can see
our house!

Waiting on Dara....surprise, surprise...Andy's blood pressure was high today!

Waiting for an allergic reaction...spoiler...there wasn't one!

Of course Andy Bach drives himself home from Cancer Treatments.  

Wednesday, November 6, 2024

Marching Orders

 One week ago I took Andy to the hospital for a blood transfusion.  His hemoglobin levels were at 5.1.  

One week ago, our world was shattered as we heard for the first time of a cancer invading his bone marrow called Multiple Myeloma.  

While each day since then has been part of our journey, today seemed like the real first day of our treatment.  

Today we drove back up to Froedtert in Menomonee Falls.  However, instead of going to the ER, like we did last week, today we went around back to the Cancer Center.  

As we were checking in, I noticed both Andy and I were having a really hard time sitting still.  We were terrified for this appointment. What on earth were they going to say and what were we going to learn?

Step One was for Andy to go in back and get his first post-hospital blood draw.  

Then we waited.  We had about an hour before his actual Oncology appointment. I looked at Andy and laughed, "Waiting one hour for oncology this week is MUCH easier than waiting an hour last week!"

Finally it was our turn to head in back.  Knees knocking and palms sweating.  First we met Dr. A's nurse, Lisa.  She was kind, caring, easy to talk to, and easy to understand.  She asked Andy a series of questions and mentioned his sodium levels were a little low, but nothing concerning.  She also mentioned that his Kidney levels were returning to normal and looked great.  OK, OK, this is all sounding positive so far. 

She mentioned his platelets were a little low, but overall OK and that if Dr. A was concerned about any of these levels, he would discuss them with us, along with the rest of the results, including hemoglobin levels.  Andy asked first, What was the number at.  

10.  

10??  Tears streamed down both our faces.  How is this possible?  We left the hospital at it was just over 7.  How did we get to 10 after just two doses of the chemo.  Well, we also learned that the steroid was a huge contributor to that.  Wow.  This is just incredible.  I wanted his number to stay steady.  I didn't expect it to improve!

Then Dr. A came in.  Just as kind, and smiling, and patient as he was in the hospital.  He gave Andy a quick review and then sat down, took out of piece of paper.  He asked if we had done any research...I said a little and he responded, "Ok.  So let's talk about what all this means."  He spent well over the next 30 minutes talking about MM, the diagnosis, and the treatment plan.  He'd stop and ask us if we had questions.  He would pause and let us absorb.  

If you are reading this, and have any sort of medical background and I get something MAJOR wrong...let me know.  If it's something simple that doesn't really impact the story...just ignore me.  I have a Business Degree in Human Resources and my PhD is apparently not recognized as it's from Google.

Multiple Myeloma is cancer of the plasma cells.  With MM, plasma cells become abnormal and multiple uncontrollably, crowding out the healthy cells in bone marrow, making it difficult for the body to produce the three parts of your blood - red blood cells, white blood cells, and platelets.  This can cause several issues for patients, such as the proteins in the plasma cells can cause kidney damage and the kidneys try to process the excess protein from the body (this is why they have been monitoring Andy's kidney function).  The protein levels will be a large indicator for us in the future. The protein can also cause the blood to be too thick, which could cause blood clotting.  And something about lab instruments...but I don't remember what that means? If the protein number spikes, that's when we know we need to alter medications, re-evaluate treatment, etc.  The cancer will also over crowd good cell growth, which is why his hemoglobin numbers were so low.  The cancer cells can also grow in the bones, causing the bones to become weak and easily fractured.  (There was way more to this explanation, but you get the idea).  Dr. A was happy that we seemed to have caught Andy's cancer before it really wreaked havoc on his body and aside from some lesions causing the shoulder pain, his bones seemed to be doing OK.  

He reiterated that there was no cure for MM, but treatment options have come SO far in the last 10 years.  He also said that pathology from the biopsy was not back yet, but would tell us something about the DNA which would help us possibly understand how Andy will respond to treatment.  This is another part I didn't TOTALLY understand and I didn't totally like.  So, you're telling me there is a test result out there that might tell us how responsive treatment will be?  Dr. A said, don't worry about it.  We'll discuss it next month when you are back.  It doesn't change how we initially treat MM.  OK...Dr. A says don't worry.  I won't worry....ish.  He also said that 'grading' MM isn't really worth it like it is with other cancers.  With MM, we just treat as aggressively as possible and see where we go from there.  

OK, so let's talk treatment.  On the top of the piece of paper he wrote 'Aggressive - - - > Maintenance'.  Basically, with a 4 drug (plus like 700 additional drugs) treatment plan, we are going to knock the cancer way, way, way down.  D-R-V-D.  

We are going to treat with a steroid - Dexamethasone.  This will help with inflammation, allowing room for new cell growth, and, in high levels, can actually help kill MM cells.  

V is Velcade.  Velcade was described to us as a cancer drug.  It's not chemo.  But it's a drug used to help kill the cancer cells.  Velcade is administered subcutaneously (yup - had to look up that one!) which simply means its given as an injection.  Velcade will be given weekly for three weeks and then off one week.  

R is for Revlimid.  I believe Revlimid is the one that will make Andy glow in the dark.  Kidding...not kidding.  This one we basically had to sign our life away to get.  But it kills the myeloma cells and prevents new cells from growing. Revlimid is administered in a pill form.  Andy will take this daily for 21 days and then off for 7.  

The final D is the one we just learned about today and surprise - we are getting tomorrow.  'Dara' or Daratumumab is newer in the fight against Multiple Myeloma.  This is usually given subcutaneous (I just like saying that now, because I sound smart), but tomorrow will be given via a slow drip IV to really control how Andy responds to the drug.  This is given weekly, then every other week, then monthly.  Dara can produce infusion reactions...essentially an allergic reaction. So with this one Andy will also take Tylenol, Benadryl, and Pepcid.  Dara will help fight the cancer by activating his immune system so basically he can fight cancer on his own.  

We'll continue with this cocktail for 4 - 6 months, knocking the cancer as low as it can go.  We then have the option of doing a bone marrow transplant.  This would be an autologous stem cell transplant. Meaning they would take Andy's stem cells, then give him a SUPER DOSE of chemo that kills EVERYTHING and put the stem cells back into his body, providing them with a nice, clean, cancer free environment in which to grow and thrive, putting Andy into a cancer remission that will last years, and years, and years, (and years and years...should I go on??)

Any questions? 

Our heads were spinning.  I can't even imagine what we looked like, staring at Dr. Al like deer in headlights.  These are cancer drugs, not chemo like we think of it, Dr. Al reiterated.  Multiple Myeloma treatments typically make patients feel BETTER.  Andy should have a normal appetite, increased energy, and less pain then he's had.  He may be radioactive, but he's actually going to feel better.  Our goal, Dr. Al's goal, is to allow Andy to live as normal, and as long, of a life as possible.  

Dr. Al left and in came nurse Lisa again.  She went through ALL the medications again, talking about the over the counter medications Andy would need to help combat side effects of all the medication.  This made Andy a little emotional.  Andy is healthy.  Andy doesn't take medication.  Andy really doesn't get sick.  And now he has a laundry list of medications he has to take - some in pill form and some through injection.  

I stepped out of my body for a minute and looked at my brave, brave husband.  You guys.  I can't tell you how proud I am of this man.   He continues to be MY rock.  The strength of our family.  I'm SO angry that he is dealing with this, because he doesn't deserve it.  

Lisa took us up front where we spent the next 30 minutes scheduling all of Andy's appointments for the next two months.  And then we got in our car and drove home.   

Overall - today was a really positive day.  We certainly exhaled learning how great our lab work was.  I still feel like I'm holding my breath a little.  Waiting to see how we respond to all the treatments, waiting to see when we get a stem cell transplant, waiting to see...waiting.  

But if there's one thing I know - we need to take each day at a time.  Each time I break down.  Each time I say what if.  Each time I realize I'm holding my breath.  I look over at Andy and I focus on the here and the now.  I focus on the positive and I focus on my faith.  

Another thank you for all the spontaneous text messages, phone calls, and other reach outs.  Your words of encouragement and support get us through the day.  We go back and read the text messages when we feel down.  You guys are such a light to us and never underestimate how supportive you have been.  Together - we'll all get Andy through this.  ♡ 

OK -and if you are new to my blogs - this is my disclosure that I'm not going back and rereading this one and editing before posting.  So....ignore the typos and grammar.  This happens from time to time :-)

Tuesday, November 5, 2024

Post One - of many and hopefully of few

This blog is, probably, mostly, for me. 

It always has been.  

But in the world of Social Media, I didn't know if it would really be necessary.  To create a blog.  

But writing has always been my outlet and to think that there are actually people who become informed through my writing is drawing me back to creating a new blog.  And I didn't want to use our Family Blog, because this is Andy's journey...as narrated by me.  How terrifying would that be...to have me narrate your life!  Ha!  So.  Here we go.  The blog I never thought I needed to create.  Never wanted to create.  And yet.  Am creating.  

So how did we get here - and where is here?  

Here's the punch line: My husband has cancer.  Multiple Myeloma.   It's a form of blood / bone marrow cancer.  It is treatable and manageable.  It is not, currently, curable.  

Andy has been feeling under the weather for a few months.  Tired. Stiff. And Sore.  It's hell getting old.  With two VERY active kids.   We are all tired. stiff. and sore.  But Andy's wouldn't go away.  He went to his doctor, he went to massage therapy.  It wasn't getting better.  

In fact, he started feeling worse.  He got more tired and then started having trouble breathing.  (Some day I'll tell the story about my reaction to him telling me he had been having trouble breathing...for a few days. Spoiler - I didn't react well).  He went back to his primary - and this is the pivotal moment of our 'story'.  His primary listened.  He said - well, looking at you and listening to you, you are healthy as a horse. But let's run some labs just in case.  

Another long story short (for another blog post another time) Andy's blood work showed he was critically anemic.  We needed to head to the Menomonee Falls Froedtert Hospital for a blood transfusion.  On the way the way to the hospital, as we tried to process a blood transfusion Andy said, "I thought I had walking pneumonia.  I just wanted an inhaler."

We got checked into the ER and the questions started:  Where is your blood going?  Why are you so anemic?  You must be losing blood somewhere!  Andy's hemoglobin levels were at 5.1 - ours should be around 14.  

They talked about giving him a colonoscopy.  How was he losing all this blood?  But first, he went in for a CT Scan to see if there was anything obvious internal - an ulcer - a polyp?  They started his first blood transfusion.

A doctor came in.  We had met her before.  What was her name and what was her role?  

She sat down.  

Why is she sitting down?  

She's talking.  

What is she saying?  Why is she looking at us like this?  Wait.  Why does Andy look like that?  And why is my stomach in my feet?

Did she just say cancer?

"I'm sorry, what?" I interrupt her.  

She repeats.  There were no obvious signs of internal bleeding, but there were lesions on a few bones that are indicative of Multiple Myeloma, a form of blood cancer.  The oncologist was finishing a few things up at his West Bend office and would be here within an hour to meet with us. 

What are you thinking right now? Because if it's dark and dismal, that is what we were thinking too.  I've said it a million times - everything was moving in slow motion, but like it was in fast forward too.  Some how that hour passed and the oncologist came in.  Likely to tell us blood cancer is terminal and we had months to live.  

He stood at the foot of our bed. I held Andy's hand tightly. Damn it, why can't I understand what anyone is saying?  

"Wait.  What?" I interrupt him.  Did he just say this is manageable?  He looked at us.  Yes.  Yes.  That is what he said. We will likely be on chemo for the rest of our lives, but God willing, it will be a very long life.  We were told that Andy can't quit his job and he can't retire.  He said we would have a bone marrow biopsy to confirm, but he was 99% sure.  And then he left. 

In the darkness, we saw a very teeny light.  But we were overwhelmed.  Exhausted.  And numb.  

It was late.  I needed to get home to the kids.  We decided to call Andy's mom and have her come up to the hospital.  Worst call I've ever had to make.  I somehow needed to convince my mother in law that her baby boy was OK, but needed her, while I was 100% convinced her baby boy was NOT OK.  

And then I had to leave the hospital.  I had to leave Andy.  I had to leave Andy and go home to the kids.  Alone.  We agreed we wouldn't tell the kids until we knew a little more or at least we were together.  So I told them the truth.  I had to take dad to the hospital, he was having trouble breathing, he needed a blood transfusion, they didn't know what was wrong, but they were running more tests to find out exactly what they needed to do.  We had lots of tears and lots of hugs.  I went to bed that night numb to everything.  Andy's pajama shirt, two dirty socks, and pajama shorts were on his side of the bed.  I hugged his t-shirt close, sobbing, and then threw it.  I refused to do this. He was going to come home from the hospital, and he was going to pick up his own dang t-shirt.   

The next morning the kids ROCKED IT!  They helped with breakfast, with school prep, and were kind in saying goodbye to each other.   (Spoiler...this doesn't last...).  Eleanor went off to school, I got Oliver off to school, and then I headed back up to the hospital.  

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...