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... 

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.  

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.  

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.  

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 :-)

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.