“Sometimes, the best way to help someone is to just be near them.” – Veronica Roth, Divergent
Today I witnessed one of those moments between another couple in the throws of the journey of Myelomaville. My assessment was they are at the beginning of their journey, and I so wanted to go over and say, “Hey..there is so much hope. Be strong.” But instead, I just snapped a quiet moment of them offering comfort to one another as they waited to head in for their daily infusion clinic support. Dave and I have had these moments. Just a subtle touch. A squeeze of the shoulder. There is something very endearing and profound about a couple dealing with a cancer they probably never heard of and the arduous task of getting through a grueling Stem Cell Transplant. Before Covid, there was often interaction and support amongst patient couples waiting and learning of each other’s journey and where they are from. The challenges they face. But sadly, we are all very isolated right now. But we share smiles behind the masks and quiet acknowledgment of one another as we wait.
Today was a great day! Dave got himself dressed! Whoop! He said it wasn’t pretty, but he did it! It was pretty beautiful to me! Every day he is doing more and more for himself. These are the steps of daily improvement that bring me gratitude and joy and confirmation that staying was the absolute right thing to do. I cannot imagine the hoops we would have faced trying to go back and do all this in Sacramento. No request is too big or small here for us. Anything we request is discussed and sorted with a matching urgency and priority.
Dave was a little disappointed though today with his labs. While his immune system has rebounded and he needed absolutely nothing today, his MM numbers jumped up. They were even higher than when his femur fractured. (I’m hoping for a lab error, but it may just be what it is.) He was quietly distressed by that. The APN and I discussed that we had Pomalyst and Dexamethasone with us and that maybe we could jump on that in the interim. The APN thought that might work, and she would shoot an email off to Dr. VanRhee and let him know we had some on hand. When we saw VanRhee on Thursday, everything was looking good. We see him again this Thursday for our weekly check-in.
We talked about not having to go into the infusion clinic daily at this point—every other day. We don’t go in tomorrow, and aside from getting my hair done, I don’t know what we’ll do with ourselves! And then I told him Montana and Jeffers were flying in, and he thought that was outstanding and told Dave to go out and have dinner with them. We will get those days off, barring anything of urgency. Then Dave asked what he would expect with the Abecma Car-T. That I had sent him information and he had some idea. I chimed in and said, “Being married to Dave for 40 years, I know that if you can provide him with what he should expect, it will help him to face it easier and not have anxiety over the physical side effects.” Dr. VanRhee turned to Dave, leaned back in his chair, crossed his arms, and very succinctly and directly laid it out. It was beautiful. He explained the fever and the chills and the cytokine storm. He said they would be very pre-emptive in preventative care to mitigate as much of his discomfort as possible and what those things would be. He then explained that there were rare but not unknown potential side effects that they would be watching him like a hawk for with 24 surveillance care throughout the seven days. That they would be prepared to manage those, but only if they arose. Except if he were to get an infection, he would be in and out in those seven days. And I would be allowed to be there in the hospital with him as much as I wanted.
There will be a three-day Bridge Therapy of Cytoxan again with another drug before entering the hospital, often used in Bridge Therapy with Car-T. Still, I’m unfamiliar with it, though I read about it. It escapes me at the moment. The trick now, and with his rising MM numbers today, is to do what we can to keep his MM quieted but not beat him up so much it’s harder for him to go thru the therapy when we start. Such a dance we are all doing. But so far, the steps have been very well choreographed.
Tomorrow I get my hair done here locally with a salon that Kim, from Goodness Village, recommended when I asked. Dave got a sweet card this week from a local church that supports Goodness Village. I had bought some cute little cards and got some stamps at the UAMS Gift Shop and so wrote her back and thanked her so much and how much it comforts us to have such a lovely, affordable place to stay and all the support we get. Since I will be here a while, I also offered to stop by the church and share our story and how they make everything so much easier for us. To have a group of citizens here dive into an obscure cancer and learn as much about our disease to provide us all the things we need is a model that I feel could be utilized in other academic researching facilities that cater to a particular group. It takes a lot of commitment for us and others to choose to travel far from home to get the very best care they can. It’s an added hurdle on so many levels. And to have a group that reaches out and says, “let us help you,” is such a blessing.
On our way home, I asked Dave if he wanted me to stop at the Tropical Cafe with the best smoothies and sandwiches EVER! He said sure, so I ran in and ordered, and then when we got back into the room, I gave him his choice of what I acquired. And they were outstanding. OH! And he carried his backpack on his back from the car while on his walker to the apartment. We had paired it down significantly in weight shortly after we got here because I was complaining there was too much stuff in it, and it was just too heavy for me to carry, with the walker, my purse, pushing the chair, etc. That was before using our wheelchair daily, where it fits on the chair handles nicely. But seriously, if he doesn’t need his laptop and charger and notebooks and just so much stuff he usually carries, can we just NOT! haha So it was light enough for him to take it for me, as I had several other groceries and the smoothie/sandwich lunch to bring in as well.
I’ve enjoyed texting, messaging, and a few long and wonderful phone calls with dear old and new friends. I was catching them up and catching up with them. It’s been perfect. I was wondering why I’m so happy here with all the drama passed for now. I realized as a Military Brat where home was never so much a house, as it was just where you are. That I enjoy change and adventure (not myeloma adventure, mind you! That I could do without!) But I like new places, exploring them, finding things, meeting new people, and the local fare that makes a place what it is for the locals. Having less to take care of and manage has been a blessing as well. The apt gets trashed in a hot minute and takes two to straighten it out. I’m notorious for hating laundry, yet I have to do it pretty much daily, which cracks me up. We did pack light. But we’ve both gathered some extra clothes and other things since we’ve gotten here. We are just about perfect in getting our creature comforts sorted out around here. And there are lots and lots of dogs. As I sit on my little ground floor patio, caged in a bit with the railing, I have a catbird’s seat and get to greet them all, learn their names, ages, and the children walking them and their owners. It’s been delightful. But I am pretty partial to little Teacup Apricot Yorkie, Pebbles, who effectively ignores me. But her owner is just a delight. She always says, “Howdy, neighbor!” and we chat about life for a bit. My mother had a Toy Apricot Yorkie for many years. So I’m getting my K9 fix.
Gibbs
This reminds me that my neighbor in the court sent me a photo of his new puppy, a Golden Doodle, Gibbs. He runs to my door every chance he gets to see if I’m home. What a little sweetie he is.
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