It's been almost three weeks since we returned home; being home is working it's magic. He has started to transition to using his lion cane instead of a walker and now has the strength to better stand on his own. Getting in and out of the house is also improving. The home PT said he is very impressed with his progress and that he's week's ahead of where the thought he would be. Thursday started the final "rest" week of this chemo cycle which is always a welcome break. Chris has been focused on healing and I've been anxious wondering what's next. Both dreading going back inpatient before the end of the year or possibly spending Thanksgiving or possibly Christmas in the hospital
We met with Dr Sborov (and Dr Cho his kidney doctor) this week. His myeloma blood markers are much improved, the chemo has helped us achieve at least "partial response. As well, his kidney's numbers have recovered to nearly normal. His blood is still recovering and he's anemic. The thing Dr Sborov said that stuck with us most was:
"You have proven to me that you are as strong as an ox. You walk up to the line of death, laugh at it and walk back. Then all the sudden we have disease control again. We must stop doing that."
My heart wholeheartedly agrees.
This year it's been incredibly frustrating to see our insurance being the thing holding us back. Dr Sborov is very frustrated as well, as he see's it hurting patients... like us. It makes him very angry, us too! His top choice would be CAR-T which they declined earlier this year. It's been FDA approved for over a year. He's going to keep trying. He heard that they might approve a different "brand" of the treatment, but there is only one slot per month and the next available slot for collection isn't until January and so he wouldn't get the actual treatment until likely March. His myeloma can't wait that long.
Another top option, the new drug we mentioned at the end of August (Teclistimab) was finally approved on October 25th. They can't even submit for approval until Huntsman has it in hand, which won't happen for a couple weeks. It's a cheaper "off the shelf" medication that has great responses similar to CAR-T and doesn't require as strong (if any?) of a chemotherapy before hand and less time in the hospital. However it is highly doubtful that insurance will approve it at this point.
The other option is the stem cell transplant. It comes with significant risks and would require several weeks in the hospital. It would be less risky and yield a better result if Chris were stronger before we undertook this, but they can only undertake it if they have disease control. It's something we've talked a lot about over the years and the chance to do it diminishes the further we go.
So, while we wait for insurance to drag their feet, we are continuing to do what we can. This week is a busy week! In addition to the fundraiser car wash early in the week, which we are so grateful for, we also have a PET scan on Monday. We're praying that it will provide information that supports the blood markers and will provide Dr Sborov with more information about his myeloma. On Wednesday they also have plans to do a bone marrow biopsy. He hasn't had one in almost five years. They are extremely painful and not always successful. But the information from one would be valuable and so he is going to try. On top of that they will be removing his dialysis and PICC line and placing a subcutaneous port. That is a lot for one day, but the change of lines will be a huge blessing. Once healed it will be possible to take a full shower. As well their removal along with continued increase of strength will mean we soon will be not just sleeping at home, but sleeping in bed.
Speaking of sleeping...to hopefully keep his myeloma "sleeping" as long as possible, we will be starting a new chemo on Wednesday before Thanksgiving. IsaKd (aka IKEMA) which is Isatuximab + Kyprolis (Carfilzomib) + dex. He will start with Isatuximab which is a similar medication to Daratumumab which worked well for us for several years. If he tolerates it well, they will add in Kyprolis on week three. This treatment will hopefully be all outpatient so hopefully will not need to spend another night in the hospital this year!
Knowing that serenity is what I crave, perhaps with so much going on this week, I think I'll recite the serenity poem in my head. Especially the first part of the second verse. "Living one day at a time, enjoying one moment at a time..."
My goal this week is to take some time to enjoy the happy moments and add in a few where we can. My favorite peppermint shakes are back at Chick-Fil-A this week and I've also heard that there is a new peppermint frosty at Wendy's. We must try them both!