The days post-transplant continue to march on. I had a bit of a reprieve today as the clinic schedule allowed me to sleep in. My IV infusions were in the afternoon. I might have thought I would sleep in but was up at just about the same time as usual. Tomorrow I am back on an early schedule beginning with lab tests at 7am followed by 3 hours of IV electrolytes, a nutrition visit and then my clinical team where I hope to again learn where I am in the midst of their expectations.

I can’t get rid of this fatigue although today I acted like a true honeydo kind of guy and fixed our garbage disposal which somehow had the power cord come loose. Sharon thought this is my best sign yet and I am again becoming a productive member of society.

I will let you know how my scorecard is tomorrow and then next set of labs this coming Thursday will include a bone marrow biopsy to see what is going on inside. Enjoy your week ahead.

Larry and Sharon

The days click by slowly, however they are clicking by. I have often told patients that after a traumatic event or surgery, it hard to see progress one day at a time. So look back on where you’ve been a week ago. I am doing that and can tell you I am much more stable and improved in many subtle ways. I eat 3-meals/day – okay somewhat smaller than I should since I did not have the appetite I used to and am still dealing with nausea for which I take meds twice daily.

One visit to the clinic this morning for my usual bump of electrolytes. I get a bit of a break tomorrow as my appointment is not until mid afternoon. Then Monday up at the crack of dawn for blood testing at 7am followed by a full morning of visits.

For my morning entertainment I watched a Cubs game being played in London. There were many Cubs fans/jerseys in attendance and after their win, they belted out our favorite Go Cubs Go song, written by the musical genius Steve Goodman who died much too young of a diagnosis of Leukemia. Fortunate for me and many others, over the decades great strides have been made in its treatment. Enjoy your weekend.

Larry and Sharon

A warmer day in Seattle which felt good to me for my walks back from the clinic to our apartment. I say walks – as in plural – because as the day’s appointments worked out I needed a morning and afternoon session. Given that, the Uber drivers benefited as they provided two rides for m up the hill. And I benefitted in that my walking output doubled today.

The morning visit was the usual IV hydration and electrolyte replacement. The afternoon visit was with my medical team and once again I am told I am acting as is expected. One tiny wrinkle is that I have developed a few patches of red and pruritic (itchy) skin. Unclear as to what this is, although with Graft vs Host Disease the skin is one organ that is affected by inflammation. For the time being we will treat it with some over-the-counter cream and follow this. Even though my brother was a 100% match, there is no such thing as a perfect match unless the donor comes from a twin – think Arnold Schwarzenegger and Danny Devito. Meaning that of 22 points of matching we matched on all. Having said that there are 100’s of proteins produced in blood and some are bound not to match. Hence the new cells may not be in total love with their new home and cause some irritations in different organ systems, skin and GI most likely. More to come on this.

Thanks for being a part of our journey.

Larry and Sharon

All is steady here. My scoreboard was good today. More hydration at the clinic and continued fatigue, which I wish I could shake. Having said that, if that is the worst symptom currently I can handle it. I nap throughout the day, wake up for meals and snacks and nap some more. Again, I did walk home from the clinic today so that is becoming a regular event. Tomorrow I have morning and afternoon appointments so will double my walking assuming I am able to do so.

I have been thinking about the tragedy of the submersible that dove to see the ruins of the Titanic. A terrible event. As I think about extreme travel, if I was to spend $250k on an adventure, I do think there is no doubt in my mind that I would go up toward the heavens and not down toward the depths of the oceans. Maybe someday I will get to have the chance to make such a decision. At the moment, I am hoping for some walks around South Lake Union and in a year or so branching out to somewhere close and safe.

Hope you are well.

Larry and Sharon

What can I say except I am so happy to be out of the hospital for the summer solstice. Year after year, if I had to pick my favorite solstice it would be Winter, because I knew the daylight hours would increase in length. The Summer Solstice was kind of a downer for me because for the next 6-months the days would be getting shorter.

Given this, my view of which solstice is my happy one vs my sad one, this time around the summer solstice is definitely my happy one. Many years ago our family traveled to Peru and in Cusco experienced the Inti Raymi – festival of the sun honoring the summer solstice.. It was a one of a kind experience and today the memories from this are in full view for me – colorful and joyous. If you ever have the chance to experience this please do. https://www.cuscoperu.com/en/festivities-events/may-june/inti-raymi/

Nothing new to report today. I continue to go to the clinic for my daily hydration and electrolyte boost. It takes a good half of the day and the other half I am pretty fatigued so rest, nap, and enjoy the lunches and dinners Sharon is preparing. Tomorrow in addition I meet with my clinical team of doctors.

Hope the sun is shining on you.

Larry and Sharon