A typical day. A visit to the clinic for a dressing change to my chest port. Our usual walk, a nap, and time spent reading the information on follow up care when we return home. There are so many warnings in the documents that I think if I read all of them ahead of time I might not have gone through this. Actually not. We were down to no other options so of course we had the transplant. Much of the documents spend time on chronic graft vs host disease (cGVHD). And the cautions we should take when home. Many of these I am aware based on the close to 100 days since the transplant. Meaning fatigue, organ system problems and the schedule of follow up care. One interesting statistic I read is that Fred Hutch at any one time is following 6,000 patients who over the years have had bone marrow transplant here. I will be happy to be added to that roster.

Tomorrow is a day with many planned visits. I will start in the oral health clinic to be cleared for discharge as well as the meds needed for my osteoporosis. I learned today in my reading that teeth are affected and need close follow up. After the oral health visit will be lab tests and then a visit with my clinical team. More to come tomorrow.

Larry and Sharon

A relatively quiet day. I was up very early for a hydration boost – 1/2 liter of saline to hopefully flush my kidneys. I won’t really know until my next blood testing this coming Thursday. Tomorrow a short visit to the clinic to have the dressing of my chest port changed.

I did take my walks today and got to my 10,000 steps. For better or worse, the walk went well and early in the afternoon, my fatigue settled in, so as has been my daily pattern a nap fit the bill.

Tomorrow I plan to begin to load up boxes that we will ship home. I brought way too much stuff for our stay. As it turned out, I found the outfits that gave me comfort over the last few months and stuck with those. We can only check so many bags on the airplane so UPS will become one of our best friends. More to come.

Larry and Sharon

Happy Labor Day. We had a nice day in spite of the cooler weather here. A friend from Sacramento came for a visit. We gave a short walking tour of our South Lake Union neighborhood. Given that tour, and my walk to the clinic this morning, along with our usual walk I think I had a record number of steps today 12,000 over 5-miles. That is good for my walking scorecard.

For my lab testing today also a good test day. Hb/Hct: 10.4/31 ( a bit lower = anemia), platelets: 136,000, WBC: 2.77, ANC:1,300 (much improved). My liver functions are normal, however my kidneys are still being squeezed with increasing BUN: 25 and Creatinine: 1.84. Not sure exactly why these numbers are rising, although my feeling is this is medication related. My team is concerned, of course, so tomorrow bright and early at 7am I will go to the clinic for IV hydration. Hoping that will help.

Otherwise we continue on our track for return home.

Larry and Sharon

One bottle taken off the shelf as even though I am not allowed to drink any alcohol, today was my 70th birthday, so a day of celebration. Amazing that I made it to a turn of a new decade based on the last few years of treatments. And as I said, we take one day at a time, and they add up. No big party today. Instead many texts, emails, phone calls and a small cake delivered by our son Phil.

I was able to go our on our usual walk. Tomorrow I am back at the clinic lab and will report the results within this blog.

Hope your Labor Day holiday is joyous.

Larry and Sharon

We will keep the bottle countdown on hold another day. If you are keeping track, there are 14 days to go until we arrive back in Sacramento. I will pace the countdown so that they all match up 2-weeks from today.

Nothing of significant note today except it is another day of pretty severe fatigue for me. Not sure why as nothing has changed in the last couple of days. I did get out for my usual walk on the lake path and did require an early afternoon nap. When I have brought this to the attention of my clinical team they reinforce that my metabolism is on overdrive and fatigue can hit any day at any time. As I have said before, I take this one day at a time. I will have my blood work this coming Monday, Labor Day and will report the results when available.

Larry and Sharon