“The voyage was uneventful.” – W.E. Bowman, Author
And when a person has both knowledge and a heart full of love and an ear ready to listen and a hand willing to help others, it is a genuinely GOLDEN experience! A shout out to our two Car T nurses on Floor 7 in the F wing at UAMS! Kathryn (Day) and Jamie (Night). A genius on Floor 7, in preparation for our Car T, decided it would be an excellent idea for us to have the same nursing team for the first three days straight. It was stellar. We didn’t need to re-introduce ourselves and make sure they knew this or that about us. And some of the neurological checks have a subjective component, so having them for the first crucial three days made it much smoother and comforting. We were really sad to say goodbye to them. As expected, however, our new nurse is also on top of things and knows her stuff. These gals do an excellent handing-off job as they turn things over.
So now Dave and I are the BORING patients on 7F! “Uneventful” in healthcare is a welcome thing! We laughed with Dr. van Rhee about it this morning. “Sorry, we are SO BORING!” He laughed and assured us nothing made him happier than us being BORING!
Now we are giving Dave supportive measures from the Bridge Therapy Chemo done before. His immune system numbers are dropping out the bottom as expected and something we have experienced many times over these 13 plus years. So growth factor shots to get his White Blood Cells back up to at least a fighting chance to help against any potential infections. No matter how many precautions you take, it can still happen. So they are diligent in preventive measures but watch like a hawk and have even changed his antibiotic to a drip vs. pills.
He’s not “hooked up” much and so has enjoyed more freedom moving about. Yesterday he did three laps around the hospital ward with our nurse in tow on his walker. Then did standing and sitting PT exercises. She wrote it on the board for me when I returned, and I snapped a photo and sent it to Tanya, our in-home PT person. She encouraged him to do what he could when he felt up to it, so he didn’t lose the ground they had gained. But not to worry, they would get it back! Our nurses have been onboard with Dave moving about. He had a perfect day yesterday.
We continue to keep informed two Car T patients coming up behind us on how it’s going and what they can expect in terms of lodging and parking, and a few other little things to make their stay better. As well as how Dave is doing with side effects and such. Both have been excited that Dave is already on the mend! To say it’s easier than a Stem Cell Transplant speaks volumes to those who have gone through one. In Little Rock, we do Tandem (two in 6 mos), so it speaks VOLUMES! The fear of the unknown, even when in general use, is a significant source of anxiety for patients and caregivers. This being new for the healthcare providers and the patients can bring the anxiety level up even higher. Although UAMS has been doing Car T for Lymphoma patients for some time. Each of us who goes through it can share our experiences for those coming behind us. It helps to lessen the anxiety. However, we are all aware that we can have a different experience.
Dave is already champing at the bit to get released, so I needed to inform him that seven days from cell infusion is the protocol. No asking to leave before Day Six! Sigh. Barring any complications, such as infection, he will get released Monday, and we’ll head back to our lovely Goodness Village apartment, which they will have cleaned for us while Dave is in the hospital!
Yesterday afternoon when Dr. van Rhee arrived to check on us, with two Hospitalist Docs, Dave was finishing up a conference call for work. Dr. van Rhee turned to them, boasting about how Dave has worked throughout his 13 1/2 years of treatment! I chimed in how he would be in the transplant wing, and the nurses would pop their heads in to see if Dave was on a call. I would indicate he was, and they would tiptoe around doing whatever they needed to do. We all had a great laugh about it all. But they were amazed. Not all MM patients can keep working. Some have labor jobs, and it can be extremely hard for them with fatigue and bone involvement, not to mention being away for long periods. Dave’s job is more cerebral. Even with that, it can is not easy. I’m always amazed that he can’t remember something I told him 30 minutes ago, but he can remember everything about his work! In truth, for us, it was very much a survival thing as well. His company provides good health insurance, and Dave has always been the breadwinner. It is a blessing Dave has been able to keep working. Though I check with him from time to time and assure him, we can make changes if he wants to step out. But so far, he isn’t interested.
Our next target is discharged from the hospital. Then discharged to go home the second week in December. And the big prize, REMISSION! So keep that in your prayers for us as well as the whole Myeloma community.
