As I wrote yesterday, I want to get the bottle countdown number to synch with our arrival home. So a NASA like hold in the count. While that is happening consider which version of 99-bottles you prefer. There is the camper version I learned where a bottle would fall, and there is the other more adult beverage version of take one down and pass it around. When we get to the end, I am leaning toward the pass it around version and hope that all of you will find time to share a virtual beer with Sharon and me.

Today we had a social visit with my friend Jim and his family here in Seattle. Jim is a family doctor who will also have a bone marrow transplant in the coming months. After that we had a social visit with my CLL doctor here at Fred Hutch who has guided my care since 2019. We wanted to thank him for helping me with his wisdom getting me to the place I am. It was kind of him to take the time outside of his clinic to visit.

Assuming all is good, I will not have labs until this coming Monday. A couple of “off” days. I still need to take all my pills and I counted the number I need to take in the morning = 20 and after dinner = 16. I feel a bit waterlogged getting them all down. But hey, I am alive and kicking.

Enjoy the holiday weekend.

Larry and Sharon

So, I have a conceptual problem. Counting up from the day of my transplant is not a problem as I can just keep adding days since transplant. My bottle countdown is my problem as I will hit zero bottles a few days ahead of when we will travel home. I am considering following a NASA protocol of building a few holds into the countdown. And of course getting the official go-no go sign once we are set for liftoff.

We had a good day today in the clinic. My labs are settling in. My liver functions are good so I can back off on some of my liver protective meds. My kidneys are still a bit squeezed and the hope is as I decrease some of my meds that protect me against GVHD my kidney functions will ease toward normal. I continue to have anemia, Hb/Hct 10/33 and the hope is down the road this will improve. My platelets have been stable and my WBC counts are still a bit low. Final bone marrow reports are in and I have no evidence of my CLL/SLL. All in all, we continue to be cleared for our return home. There is some concern from my DEXA scan and the suggestion is additional Calcium supplements and a bisphosphonate infusion. I will see the oral health team next week to see if I am cleared for that.

We are confident in our follow up care in Sacramento and the support that Fred Hutch will provide in watching over us. Given the Labor Day weekend we have a few days off from clinic visits. Next set of lab testing will be on Monday. Enjoy your holiday weekend.

Larry and Sharon

3-months from my transplant and I am still walking tall. Well, I don’t know how tall as over the last decade my height has decreased by 1-inch. I was able to do my regular walk today. And of course my afternoon nap. Given the 90 day mark today I had my Covid vaccine. My arm is a touch sore, nothing terrible. Interesting thing of how disjointed our medical record systems are, I asked if this vaccine dose would show up on my CA online card. The answer was no. It will be seen on the State of WA system and the two states do not talk with each other. So I received a new card to carry around, although I doubt anybody cares about Covid vaccine status these days.

Tomorrow I will have lab tests and a visit with my medical team. Results from my bone marrow testing continue to roll in and all are good – no evidence of my past CLL. Smiles all around these parts.

Larry and Sharon

A quiet and cool day here in the Pacific Northwest. No clinic visit. A nice outdoor walk, better in cooler conditions. Last night was the first night I slept without oxygen. Since I wake up on a regular basis to empty my bladder, I checked my O2 saturation and all stayed above the level that is supposed to be my baseline. I am hoping that means I am done with supplemental oxygen.

Tomorrow I have a clinic visit for a dressing change for my central line catheter and then a Covid vaccine. The vaccine I will receive is the last one released and in a month I will receive the new one. I have mentioned my immune system is like a newborn baby. Obviously I need Covid protection. Of interest is that after my CAR T therapies, I did not respond to the vaccine based on how those treatments affected my ability to respond to vaccines or viruses. Through research supported by LLS, we know that people who undergo bone marrow transplant do, in fact, respond to the vaccine. At any rate, I will still need to live a bubbled up lifestyle.

Lastly we did make airline reservations to return home on Saturday September 16. Let the packing begin.

Larry and Sharon

Another day in the books. The air cleared a bit so I did walk to the clinic and walked around South Lake Union. After a step back weekend I was back to 10,000 steps over 4+ miles. It was also a good day for lab tests. My CBC is stable although I continue to be a bit anemic and my white cells are down a bit. My chemistry liver and kidney tests are also stable. I also had a dexa scan today and no surprise is that my bones are a bit thin – osteoporosis. I don’t see that as a problem and will see if any treatments are recommended. The great news today is that in looking at which cells are populating my bone marrow and peripheral blood, the cells are 100% my brother’s, meaning the transplant to this point has been a success. One more step toward returning to home now planned for the weekend of Sept 15-17. Emotions are all across the board.

Larry and Sharon