A rather long day at the clinic today. All good. We met with the nutritionist who is helping to guide me to include the correct sources of nutrients. Sharon is my best expert on this and it was very apparent during the meeting that she is doing an exceptional job making sure I am eating, and keeping down, what I eat. Since our couple of bad days over the weekend things seem to be going smoother. My weight seems stable although I am retaining some water in my ankles so that may skew things a bit.

We next met with our attending and the clinical team. They all agreed I am doing great for my timeline. I like to hear that although that does not exactly take away my fatigue and general sense of malaise. Today we learned that the next big set of tests will be a bone marrow biopsy on day +28 and on that day a series of blood tests called “chimerism”. The purpose of this will be to tell us of the blood cells floating around what percentage are mine and what percentage are my brothers. The doc and I made a bet as to the outcome. I bet 70/30 my brother/me. He thought the number would be higher 85/15 my brother/me. Of course the less of cells there are left of mine the better. More on this to come as we gain a better understanding.

The last stop was for my 3-hours of hydration and electrolyte replacement, then a stop at the pharmacy to pick up a drug I will take for the next 100-200 days to keep a CMV infection I picked up, who knows when. As I am now on immunosuppressants, things like this could rear their ugly head and we would not want that.

No blood counts today so I can’t add to my scoreboard. Then I walked home and had a lovely nutritious dinner prepared by Sharon. Hope you are well.

Larry and Sharon

The theme of today is Living Deep in the Big Muddy. That is what our head nurse told me at our visit today. Not sure if she was aware of where this phrase came from and I recognized it, can home and played the Pete Seeger version.

I stayed out of the hospital last night, but it was a close call. I lost my dinner and again spiked a temp of 100.5. Since I had been blood cultured the night before and given antibiotics. Tylenol did the trick controlling the fever and it has not yet returned. Fingers crossed.

I go go the clinic daily now for a 3-4 hour treatment of hydration and electrolyte replacement. After the visit today I actually felt good enough to walk down the hill back to our apartment.

My scorecard continues to rise at an amazing pace and level. The reason I am in the “big muddy” is that there is so much going on in my body, from rebuilding my immune system, to having the new cells like their new home and not wage a war, and trying to keep all my systems going. When one thing is not going well, it is a bit hard to figure out the exact cause. So we are wading and not drowning. Some day we will make to to the other end ot the shore.

Hope you had a good Juneteenth.

Larry and Sharon

It was good to be in our apartment Friday night. And I wish I could tell you that all is smooth sailing although this is not a simple medical intervention and my body is feeling the effects.

It did not take us long to have to go back to the hospital. Late yesterday I spiked a fever of 100.9. Nothing to mess around with. Back we went for a midnight visit. The protocol called for blood and urine cultures and a dose of IV antibiotics. Once deemed stabile we returned home and today I have been exhausted. But, hey, no more fever so far.

This journey is definitely going to be a roller coaster ride with dips that we can see coming and some that just act as an ambush. I will pace myself as best as I can and leave my care in the good hands of the team here, who have seen and dealt with just about everything.

Hope you had a good Father’s Day.

Larry and Sharon

You may notice that I have gotten rid of the .5 for the day’s post. That seemed important in the early going and now the medical team is focused on going forward by a simple day numbering scheme.

The other reason is that I have been discharged from the hospital and spent the day in our apartment today, that is except for the 3-hours in clinic this morning.

Big picture I seem to be doing as expected. I am very fatigued although I am told this is because I am more active no longer sequestered to my hospital room. As an example, if you have been to the Fred Hutch clinic you know it stands at the top of pretty steep hill. While I was in prep mode for the transplant I would always walk up the hill. After the transplant I am anemic so no real stamina. This morning we took an Uber up the hill. And after the appointment we walked down back to our apartment. The walk is a bit less than a 1/2 mile. Doesn’t sound like much however it was a big emotional motivator.

Going forward we will have clinic visits every day for IV supplements of Magnesium and Potassium. The next big day will be day +28 when I will undergo bone marrow biopsies to indicate how deeply rooted the new cells are. Today, the scoreboard continues to look good.

As Dorothy said in the Wizard of Oz, there is no place like home.

Larry and Sharon

Like the Cubs who lit up their scoreboard today, so are my cell counts. It was once said that chicks dig the long ball, and my counts are definitely out of the park for just about day +16. As an example my ANC today was 920, platelets was 257,000 and HCT = 29.

My team is planning for my next steps and discharge from the hospital. When I was first admitted here on May 31, I asked the team if I would be out for the summer solstice. At first they said it was unlikely and with each passing week the likelihood improved. Given the uptake of the new cells has gone so well, the team will be planning to discharge me prior to the Summer Solstice. I can’t wait to let the sunshine in.

Hope you are well.

Larry and Sharon