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!  

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.  

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....

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!

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.