The news we knew

The brush finally stops, having finished its series.  Apparently, my dental hygiene is now complete.  I put it back on the charger.  And just stand there hanging my head. And breathing. Irony is never lost on me. My last post about keeping it together (Read it here if you haven't yet) was perfect timing for myself because I have had to REALLY work hard these last 4 ish days at keeping it together.  And it has definitely been that.

We were finally seen at the MS Clinic last week. His normal neurologist is gone and the soonest we could see him was September 20th.  Nope.  I asked to see the other neurologist we saw while his was on medical leave.  His soonest was September 14th.  Still nope.  So we were seen 2 days later by one we have never met before and I finally found one I think I am older than, BUT he was very nice and I felt like he was very experienced.  So maybe he just ages well.

I didn't go in there with hard questions. But sitting there watching Jeremiah miserably fail every single "test" and seeing the frustration in him, and answering the questions I was given just forced those questions out of my mouth. The things I have refrained from asking any doctor because I know... but I didn't care. What should I expect next? What is going to happen here? What is our goal? What are we working towards? What next?

The doctor was very polite and sensitive. He was also very honest that he is the newest cook in the kitchen (talk about knowing his audience!)  and things don't go as smoothly when you have too many of those so he would let our normal neurologist take the lead, but this was his opinion based on Jeremiah's case. Here's where things are at:

He likely won't recover this time. For sure not like he has in the past, but even a small recovery would be considered "a win" to them.  There's just so much damage from this attack on his brain and spinal cord. There's a lot of scar tissue and active disease still showing up, despite all the treatments he's had. They aren't giving up, and there are still some options. But that is his medical opinion given what's been done in the last 3 1/2 months and what is still happening.

As for the intense physical pain Jeremiah is having, they did put him back on Gabapentin.  If that does not provide enough relief they would like him to get some injections directly into the area at the base of the skull. They caution it does not work for everyone, but for those it does, it seems to work well.  He's been on it for a week now, and it works sometimes but not all the time. We will titrate up his dosage before we try the injections.  Our main goal I think is to find a routine that allows him to sleep through the night. Because the last few it's been like having a newborn.  He's up 3 or 4 times a night.  Thrashing all over the bed, slamming his wheelchair into everything, groaning... just a hot mess. We have joked he is the true bull in the china hutch.

I struggle in my caretaker role that he is still falling a lot. It's not a situation where we do not have the right equipment or are not taking apporpriate precautions. And what I call a stubborn ass, the clinic assures me is not entirely that. They tell me that his MS has affected the part of his brain that makes decisions and common sense, so he simply does not understand safe transfer and good choices when it comes to phsyical abilities.  And then of course there are the times that he does everything right and his body simply fails him.  His legs wont move when he wants them to or where he wants them to.  It's just the perfect storm for disaster. Thankfully, we've had no major injuries and I do not need a gym membership.  Jeremiah's mom said she would definitely not want to arm wrestle me. :)

As far as treating the MS... Man... this is the ugly part of this disease I guess. They're nearing the end of the list. Plasma exchange is off the table at this point (thank GOD!) because he received the Ocrevus and that would remove that from his system as well. Since it's $15,000 ish per dose, Mayo was sure the insurance company would have issues with that.  As would we. We want to make steps forward, not back.  So what can they do? Tentatively we are thinking weekly maintenance doses of IV steroids and try to give the Ocrevus a chance to work.  (It can still be months before we would see any improvements, because MS meds do not "fix" attacks and damage already happening, it can only work to reduce future attacks)

If he continues to decline as he has so far, they want us to consider a chemotherapy. It's not one I had so I was not familiar with it or it's side effects. But the idea here is exactly like it is for cancer patients - wipe the entire body out and hope it comes back better able to fight.  Jeremiah is very vocal about being terrified of this and at this point is not even considering it.

Speaking of being vocal, he continues his speech and occupational therapy. He still has some pretty severe cognitive function.  What does that look like to others? Well, it honestly just depends on the day, the time of day, what he's been doing that day... it's VERY random.  Sometimes, in short conversation, you wouldn't likely notice any differences. But there are other times he spells his name wrong at check-in and doesn't notice it or still confuses his right and left sides. 

 We both keep waiting to figure out a new normal that works for us, but so far, we have not found what that is.  We try to remain optimistic. I look forward to the glimpses of the man I married because they are still there.  And in the moments that I see a shell of a man who is suffering, I just pray.  If I could take this from him, I would. But it just doesn't work like that.