I feel like I am in that book/movie “News of the World” posting my daily news. Many things went on today. I had my lab tests and all were good. My ANC count rose to 600 – still low and requiring daily Levaquin, Hb/HCT hanging in there at 10/33, platelets good, magnesium levels holding on my oral supplements, and my kidney creatinine was a smidge better.

I had my pulmonary lung function testing today and waiting for the official results. The tech told me on the side that my tests looked pretty much the same as before I started transplant, so given my interim pneumonia that was encouraging.

We met with our doctor’s team and not so good was my weight. I lost 2-pounds this week and am almost at my all time illness low weight over the course of many of my treatments. That was worrying and I explained that I eat what I can, but my stomach seems full almost immediately on taking a few bites of anything. The worry is perhaps I am developing graft vs host disease of my upper GI tract. Very common in transplants and perhaps when I was on Prednisone which is a treatment for this, the problem was masked. Tonight I will begin a medication to stimulate my appetite and the ultimate diagnostic test will be a look down into my stomach, an upper endoscopy with biopsies. Turns out, this must be a big problem around this clinic because the next available appointment for this is Sept 1st. Depending on how I do this weekend, my team will try to move this earlier, especially because we need to know and that would be about 10 days from my 100 days, which could delay my return home.

Tomorrow I will have the adrenal cortisone stimulation test that I have mentioned previously. Next week has consultations with the pulmonary doctors, ENT doctors, and my 80-day bone marrow biopsy.

To be clear, my lack of appetite is not a problem with Sharon’s cooking. On the contrary she is a great chef and trying to hard to get me protein and calories. More to come.

Larry and Sharon

Another hot day in Seattle. One more hot day to go before it cools off on Friday. As I have mentioned the heat affects my energy and steps taken. Today was common of the last few days 7,800 steps over 3-miles.

I did receive the results of my chest CT scan and the positive news is that my lungs are healing, decreased evidence of inflammation or infection. I have continued to not require oxygen during daytime hours. Tomorrow I will have my pulmonary function tests done. That will tell us if my lung function supports the x-ray findings. Lab tests also will be done as well as my visit with my clinical team. I will make them aware of my lower energy levels. Having said that, on Friday a cortisol stimulation test will be done. I will receive a chemical injection to simulate my fight or flight response to evaluate whether of not I need hydrocortisone supplements.. That should be helpful to know where I stand.

So far so good with our countdown at the moment.

Larry and Sharon

Temperature here in Seattle hit 90 degrees. This played out again in my outdoor activity. I was out before 7am for my walk up to the clinic. CT chest scan result is still pending. My morning cortisol level was checked and found to be normal. Actually good news, although I am still fairly fatigued.

After I returned, Sharon was again my urban tour guide and she led our walk through the urban settings and shady sidewalks. My scorecard is pretty much the same as yesterday, 8,300 steps over 3+ miles.

I have mentioned the deep vein catheter in my chest and to protect against infection the dressing, or sterile covering, needs to be changed once per week. That occurs on Wednesdays now, so another relatively early morning walk to the clinic. No other labs until Thursday. The excessive heat here is in place until Friday morning so we will manage our outdoor activities accordingly.

Fingers and toes crossed that my recovery continues speed bump free. Sharon and I appreciate all your support.

Larry and Sharon

Activity picked up today in spite of the heat here. To stay in the shade, Sharon led me on a city/urban walk, in a way that the buildings casted shadows on the sidewalks we traversed. It was nice looking into storefronts. 8,000 steps today over 3+ miles. That count included my walk up the hill to the clinic. My lab tests today were mostly in line with what we are expecting, although my WBC and ANC counts continued to fall a bit. That will continue to be monitored.

One new test that will be done this week, based on my reported fatigue, is to check my serum cortisol levels. The basis of this is that our adrenal glands are responsible for producing cortisol, which is needed for our fright or fight reactions to stress. I have been through this before as it is possible that the prednisone I had been given is suppressing my cortisol. After my 2019 CAR T experience that included high dose steroid treatments, this was diagnosed and for almost a year I was supplemented with low level cortisone. So, when I discussed this with my clinical team today it struck a chord with me. More on this to come.

I know my titles of these blogs are a counting up and down. As the number of bottles is reduced, it reminds me of a NASA countdown. As we get closer to zero bottles I have fingers crossed that there are no holds in the countdown. Tomorrow is another day, important as I am scheduled for my follow chest CT scan. Otherwise, hope you are well.

Larry and Sharon

Today was a step back day. I have felt more fatigue the last few days. I was told this would/could be the new norm. I have had some medication adjustments to perhaps that is a factor. I cut back on my walking to 5,000 steps over 2-miles. I also managed a couple of short naps.

Having said that, I successfully flushed my ports today and stayed away from the clinic for the first time in almost 3-months. I will walk the hill early tomorrow for my lab tests. Also upcoming this week will be a CT scan of my chest to evaluate the pneumonia I had last month, as well as pulmonary function tests. On that note, I have continued to be supplemental oxygen free during waking hours. And because our walk was short today, no carrying backpacks or rolling oxygen tanks. I wonder if my lungs readjusting to room air may also be a factor in my fatigue. Too many confounding variables here to pin a change on any one thing.

Taking it one day at a time.

Larry and Sharon