Hi. I'm Back. |8-28-17|

Did ya miss me?

Sorry for ghosting you. I hit a wall at the end of April, where I was just d.o.n.e. with cancer consuming our lives. I was tired of feeling like it defined our family. It was all we talked about, thought about, breathed. I needed a break to catch my breath. I needed to live the life I was missing.

I'll give you a quick re-cap of our summer:

Mike started the brentuximab last time we talked. He got 3 rounds of it, or was it 4? Anyways, there we were, sailing through the summer, or so I was telling myself, and all the while, mike was struggling with having what we called "anxiety attacks". Every time he would get up from his chair (curse you, ugly recliner!) he would get really short of breath and have to get back to his chair. Or bed. Wherever. Well, after talking to the doctor about these anxiety attacks, they decided to send him to see a pulmonologist just to check his lungs out.

We met with Dr. Brownback, another doctor who gets 5 stars from us. Mike's O2 sats were dropping drastically just from walking down the hall. Then they did a pulmonary function test and his best score was below 50%. YIKES. So he wasn't having anxiety attacks that were causing him to lose his breath. He was losing his breath. He said, "I kept thinking it was in my head that I couldn't breath. I'm glad I found out I really couldn't breathe!"

A CT scan showed that his lungs were not looking too good. Guess what followed that?

The winner is whomever guessed: Biopsy.

Congratulations. You can read the rest of my post as a prize. For those of you who didn't want to play my guessing game and just kept reading, well, I guess you don't like to play by the rules, and so, you and I can be friends. (I don't like rules much, myself.)

The biopsy showed that the problems in his lungs weren't from infection, so they were able to conclude that it was toxicity from the Brentuximab causing this. Upon researching more about brentuximab, I found that about 5% of patients had this side effect. OF COURSE Mike was going to be in that group! shake my fist, mutter mutter, of course of course... molly wants a horse. (Sorry, rhyming just pops in my head- it happens when you have little ankle biters running your life.)

Prednisone was the solution to the lung crap, and also, we found, it was a solution of sorts to him not having any energy! He couldn't take the brentuximab while on Pred, so he was glad for that little break, but scared he wouldn't be able to go back on it. Pred gave him so much energy and it was angels singing kind of happy days around here. He got up before me and the kids and left the house. LEFT THE HOUSE, PEOPLE! LEFT THE HOUSE FOR MANY HOURS AT A TIME!!!!!!

But, you know that dumb saying, that I suppose has some truth to it: All good things must end.

He was tapered down to a low enough dose of prednisone to start the brentuximab again. Last week.

While he was in there, getting his infusion, he was talking to Dr. Ganguly about this severe shoulder/back pain he was having. The chiropractor hadn't helped it, and ice, nor ibuprofen were doing anything for it. Dr decided to get some x-rays.

And you know, if you give a mouse a cookie, er, a doctor an x-ray, then they'll want a CT to go with it.

So he got a CT last Thursday, and they called that afternoon to tell us to come in Friday morning. Well shit. I'll tell ya what I know: when the dr wants to see you the next day after a scan, it sure isn't to tell you how amazing you're doing and how wonderful they think you are. Although I think they should start doing that just to mix things up. Oh, and offer a Dr. Pepper when we walk in the door. I've found that a Dr. Pepper can perk up most dark days! (And, there was that old lady on the news that said her secret to a long & healthy life was a dr. pepper a day.) I'm all for trying to next new thing!

We went back on Friday and faced the music. "Blah blah blah, it's bad, there are new spots, blah blah blah, get her some tissues, blah blah, we are going to do another PET scan, blah blah, are you sure she's ok? blah blah blah, we're never going to stop fighting for you, blah, you're going to need to do a donor transplant." And we walked out, and I cried and sniffled some more, and we decided Chipotle and Dr. Pepper would make us feel better.

We drove home, packed our bags, picked up the girls from school, and drove to Branson. We spend Saturday at Silver Dollar City and had the most amazing tiny family vacation we've ever had. Truly, we had a BLAST. I hope we all can remember it forever. (I probably won't, but that's just because I can't even remember what I told you 2 seconds ago.) I included a few pics so maybe that will help me remember. So many laughs, and joy, and love. It was PERFECT.

Today Mike had that Pet scan, and on Thursday we will go back to hear what their new plan is. Dr. Shune mentioned a new drug that's similar to brentuximab that they might try. I'm pretty sure they'll all say he needs to do the transplant. I'm all, fingers in my ears, lalalalala, I can't hear you.

We'll talk about that if the time comes. Until then, ... cross your fingers with me that they let him harvest this year. I don't think either of us will survive another harvest from this side of the window.

I'll write again soon. ish.

XO

Robin