“And in the end, it’s not the years in your life that count. It’s the life in your years.” – Abraham Lincoln
Another stellar day here in Little Rock yesterday. We managed to get the car registered, and so now we are 100% legal! One of my fellow apartment dwellers gave me the “better” Motor Vehicle Office to go. Boy, was she spot-on. It’s further away, though a lovely, easy drive. But in and out with knowledgeable peeps who got it all done for us. We also learned that when we get home and register in California, call the number she gave, with our file number she wrote down, and Arkansas will wave the property tax fee that charge. It processes in January, so we’ll be home most likely well before then. We needed to get it done, and trying to slip it in when Dave felt well enough and not neutropenic was a challenge. Also, he still works daily, so “What’s your schedule today? How are you feeling?” Anyway, yesterday was the day and it felt great to be successful.
Then as we walked out with our cool new license plate, we realized we didn’t have the particular star head (whatever it’s called) screwdriver to get the license plate on! So Dave suggested we head to the dealership since I’ve made so many friends there and ask them to help us get it on. So off we head
to them, and when I walked into Service with the License Plate in hand, they all clapped. Haha, I said, “We don’t have the super-secret screwdriver to put this on!” One guy smiled broadly and held it up, and said, “you mean this super-secret screwdriver?” And he immediately went outside and put our new plate on. Gosh, I just love these guys.
Somehow, (HA!) I’ve managed to get everyone I meet here invested in the Dave and Lori Story. It’s like I’ve garnered all these cheerleaders and it makes every day, and everyday tasks, absolutely delightful.
I called Abecma 360 yesterday about their travel/lodging reimbursement program. We won’t qualify, sadly it is means-tested. But we had the absolute BEST phone call! (Thanks Goli!). I told her I would apply anyway, because, with all my work on the Patient Leadership Council for Takeda, I understand how they work very hard to find ways to give back to the patient community. If they don’t know that we don’t qualify, they won’t know if they are hitting all their targets with their program. It’s always good to have input from the audience you are serving. They may not realize that even if you have more money than some, the financial burdens can still be great. So is it the help to the community you are serving, or a particular subgroup? Anyway, she wasn’t quite expecting that from me, and it was an enlightening conversation for us both. Very enjoyable. Of course, we don’t care in the big scheme of things. We will rearrange whatever finances we have to in order for Dave to have this. And we’ll climb out of whatever hole we get into with a smile on our face because we got it done! We are blessed that we can weather it, and grateful.
Then, as I mentioned in my post yesterday about not meeting people by chance. Before I left I was starting the process of handling a small healthcare issue of my own that has needed attention for too long. No biggie, it’s just a process. Anyway, the gal working with me and I eventually got to how I was in this situation for too long and Dave’s MM caregiving duties, and being sick of anything having to do with doctors overall by the time I was done with him! haha Turns out, her Aunt also has MM. And she was also embarking on the Abecma Car T at Stanford. Like us, she got in with a lucky opportunity, especially since she is not a patient there. One very diligent nurse, called Stanford every single day to see if someone canceled or backed out, and low and behold they did and she got in! I sent an email to her niece yesterday to tell her how we are doing because of course my issue is now delayed yet again! I asked how things had gone with her Aunt and she said “GREAT!” She offered to connect us up and have her call me and she did. Oh, what an amazing call that was! I hope to meet her and take her to lunch when we return. She had a great experience. A bad first day with side effects, but that was pretty much it. She’s home, cancer-free, taking daily long walks, enjoying and caring for her grandkids, and on no MM medications except an anti-viral and prophylactic antibiotic daily. She said it was easier than an SCT! Gosh, what great news this was to hear. Also, because many of you have asked, hers was indeed paid for by Medicare! That is HUGE NEWS! IMHO!
I really enjoyed sharing the details of the conversation with Dave. He was so happy to hear all of it. For me, it was a wonderful reversal of having someone reaching out to me to share inspiration and hope when usually it’s me doing that over the years. But that’s what a community with a shared crisis does for one another. So another GREAT DAY for the Dave and Lori Story!
And Dave, practicing walking all the way to the car from the Apartment instead of me picking him up at the door. He didn’t use his wheelchair in the Motor Vehicles either. He’s a ROCKSTAR!
The last bit of wonderful news is that our daughter and new hubby are flying in tonight, late, to spend a weekend here with us in Little Rock. We cannot wait to see them and barring anything funky, our doc is giving Dave and me the whole weekend off to enjoy their visit. We have more places to go than time, which is lovely. We’ll be mapping out our weekend of good food in Little Rock and maybe a drive to a park or two.
