Another typical day at the ranch (ha ha). 4-hours in the infusion center. This has really become the centerpiece of my days. The main variations are what time my appointments are scheduled. Today was 2pm. Tomorrow at 9am. The other centerpiece is my ongoing fatigue. I know someplace in leading up to this, or in the documents, this is talked about. But I will tell you when it hits it is overwhelming.

I am enrolled in a clinical trial run by the palliative care department here, you may think hospice when you hear the word palliative, although in this case they are trying to ease any discomfort I may have. Today they suggested to combat my fatigue I get out and walk more. They said it seems counterintuitive and intellectually I understand. I do my daily walk home from the clinic. I need to find a way to add some steps and will work toward that someday soon.

Wherever you are hope you are staying cool and safe from foul air.

Larry and Sharon

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