Consult Day

 Today was our first day back to Froedtert in a week!  It was Consult Day!

Have I mentioned how much better morning appointments are?  Waiting the morning for an appointment is H-A-R-D.  But finally it was time to head to Campus.  

First we stopped at the Second Floor for some labs - Andy also got the badges for his TriCat replaced (THAT'S what we are going to call it - his TriCat for Trifusion Catheter).  We also learned that the TriCat would stay in for the length of time he 'would be in the hospital' for his Infusion.  So once his numbers stabilize post infusion, they'll pull the Catheter.  It's nice to know there is a relative end in sight and that he wasn't going to have this thing for months.  Although...besides some itching, he says it really doesn't bother him. 

Then over to the 4th Floor Grace Clinic for our consult. 

You guys.  Our surgeon just busts through the door all smiles, all friendly, so happy to see us - all just to introduce our nurse (or care consultant, or whatever her job title is!  Let's just call her Nurse J - she schedules all our appointments for us and tells us where to go and what to do!)  I just find it so fascinating that this brilliant man, who is saving Andy's life, has all the personality and most polite bed side manners!  And we love him!

So we met with Nurse J and she informed us that Chemo Day has been bumped back one day to Tuesday, March 18.  While this is not devastating news....it's not news we wanted to hear.  She said it had to do with the scheduling of Doctors...it is what it is, but given we are ready for treatment TODAY, we certainly didn't want to have to want another entire day.

She then went over our care plan again and had Andy sign all the forms.  We signed forms for consent to treatments, risks, side effects, medications, and who knows what else.  He also signed a form that said I agree to be his primary care giver.  Dang.  I'm locked in now!

While we didn't learn a lot new from Nurse J, she did explain that the Melphalan can cause severe mouth sores and one way they have found to combat the 'mucositis (mouth sores)' is cryotherapy. In other words, for 15 minutes before, during, and 30 minutes after the chemo, Andy should continuously chew ice, popsicles, or ice cream!  This helps keep the mouth very could which prevents the Melphalan from adhering to his mouth.  Interesting.  And once I hear we need to do something, I'm ALL IN.  So poor Andy is going to go to the hospital on Tuesday with A LOT of popsicles...already placed my Amazon order for those cheep ice-y ones that come in a bag (because, how do you keep popsicles cold at the hospital?)  Anyway....

We also talked about when I should call the 24 hour nurse line (answer - any time! For any reason!) And what are the reasons that Andy could potentially get admitted to the hospital post transplant.  

We once again were instructed that Andy should feel pretty normal for that first week and then once his numbers drop, he'll start to feel pretty lousy.  During that time of low counts, he may need platelets, bags of blood, electrolytes, etc.  Nurse J informed me that on those days, we might be at the hospital longer and that I could leave Andy there and go do anything I needed to get done.  Sorry, Nurse J.  I don't see that happening :-)  I laughed at her.  She's kind and acknowledged she didn't really see me leaving, but had to say it anyway!

She went through visiting hours, should we be admitted and how many visitors Andy could have.  However, she said, we really discouraged any visitors in the hospital and she kept saying, just pretend it's March 2020.    

She kept asking us if we had any questions and maybe we'd ask one or two, but for the most part we just stared at her and tried absorbing everything she had to say.  

Then Dr. A came in and basically went over everything Nurse J had just gone over.  He went into a little more review on the actual Stem Cell Transplant.  He said that Andy's proteins were the highest he had ever seen, so the fact that he could still detect some myeloma cells, was not surprising.  However, that is why we were doing the SCT, to kill everything else that was hiding in his body and get it replaced with the good cells.  We talked a teeny bit about maintenance medication plan post SCT, but essentially that we'd cross that bridge when we came to it.  

He talked about our milestones of the first 30 days, 30 - 60 days, 60 - 90 days and then post 90 days.  He said he kept giving us worst case scenario so that we weren't surprised by anything, but overall, he was feeling hopeful that Andy would have a very good and positive response to the SCT. He commented on Andy's overall attitude, spirit, and energy and how that has such a positive impact on the procedure.  He also complimented Andy's family support - and he wasn't just talking about me...we've told him stories about all of you.  He knows were aren't going through this alone and he said having that care network is HUGE.  So keep it up care network - you are helping when you don't even know it!

Hm. Hm. Hm....I think that's most of the details.  It really was just a lot of review and a lot of opportunity for questions.  I don't feel like we have a lot of questions because we don't know what we don't know and are just kind of along for the ride!  Everyone is so thorough and so patient, it's just incredible.  

Dr. A, while giving Andy a quick physical mentioned that all Andy's test results came back positive and that his body is in good shape to accept the transplant.  

After Dr. A left, the pharmacists came in to review all our medications.  Andy turned to face them and blocked my view of a piece of paper they were reviewing with him.  I was scribbling ALL the notes as they were talking about the various medications Andy would be getting to fight infections and nausea. Andy turned to ask me if I had any questions and I realized the sheet they were reviewing had everything written down.  I mostly like to write down why we are taking something, but even THAT was on our sheet.  Man, it's like this isn't their first rodeo!  

And then we were done with our pharma consult.  

Each person we met with today asked Andy how he was feeling.  They also led with 'nervous'? And Andy always trumped that emotion with excitement.  It feels weird to be excited for something we know is going to make Andy feel bad.  But we also know that pain is temporary and that this will hopefully make Andy feel SO SO good for SO SO long.  That this SCT will know Andy's MM into remission and that this little blog of mine will go silent for years and years.  We are excited.  Excited and ready.  And we are NOT patient.  And waiting is SO hard. We don't want to be here, but since we are - Let's Do the Damn Thing!!