Today we had our weekly meeting with our attending physician. I asked her how I was doing and she said as expected – meaning fully exhausted. AIn’t that the truth. She explained to us that the job of rebuilding an immune system via transplant has my body’s metabolic furnace running at a very level. As if I was was an ultra marathon runner putting in hundreds of training miles daily.

To that point, it was explained my calorie needs are high, and yes I have lost weight in the last month when chemo and then hospitalization began. Sharon is a great cook although I just don’t have the appetite. High protein drinks such as Ensure are suggested. My problem is that I have been through that route before and they are just so unappealing to me, Part of my weight loss is muscle deconditioning and I know that will come back over time.

Given I had lab tests today I can report on my scoreboard which continues to be good. As I am trying to walk more I will also include my walking mileage and steps. Yes, I did add a tenth of a mile today.

Scoreboard is as follows: HCT: 36, Platelets: 110,000, Total WBC: 4,830, Total ANC: 1,880, Miles walked: 2.12, Steps taken: 7,243

Big birthday for America tomorrow. Please enjoy safely.

Larry and Sharon

I kind of wish there would be more names for these days then just the numbers. Think of anniversaries. There seems to be a name for each year. Examples, year 1 = paper, year 25 = silver, year 50 = gold and so on. For the time being I will just keep titling these posts as days since transplant.

Today was not much different than the others this week. I have been told boring is good and I don’t really want to stand out as one of the more interesting/challenging cases. Tomorrow I will have blood testing, my infusions of course, and a meeting with my clinical team. Perhaps we will learn more about my recent bone marrow biopsy and what the plan will be for the week ahead.

As I mentioned yesterday I am on a mission to walk a bit more each day and today I did just that. Between my walk home from the clinic and my walk around South Lake Union I walked 2-miles. The weather is nice here so I will try to add some tenths of miles each day.

Our apartment will have a view of the fireworks here so we will plan to avoid the crowds – pretty much a given for me – and see what we can see. Stay safe.

Larry and Sharon

We are entering a phase where our days are patterned pretty much the same. Regular mealtimes, visits to the clinic for my IV infusions, short naps through the day as I am still very fatigued.

Today something changed for the better as I went out, accompanied by Sharon of course, on a 1.2 mile walk. That, plus my walk back from the clinic, is the most walking I have done in a day since being admitted to the hospital one-month ago.

Mind you, I am not burning up the pavement. For a guy who could at one time run 8-9 minute miles, walking at a 30-minute per mile pace seems absurd. But the absurdity is reality and at least I am out there. Since being admitted I have lost most, if not all my conditioning and I can see loss of muscle mass in my legs. I hate to remind myself that I have been here before on several occasions and have mostly always made a comeback. I will take this slowly, one-tenth of a mile at a time.

Be well,

Larry and Sharon

Nothing new to report. I feel like I am currently living in the old days of the Internet. I am sure you know when it was referred to as WWW = Wait, Wait, Wait.

That is what I am doing now is waiting for my bone marrow results. The early read is good where prior to the transplant I had no evidence of CLL cells and that is the case today, no evidence of CLL in my bone marrow. There are some subtle results I am awaiting to confirm how I am doing and otherwise the next bone marrow biopsy will be at day +80, around the middle of August.

I am continuing my daily trips to the clinic for my IV infusions of electrolytes, Magnesium and Potassium to be exact. And yes, I am walking back from these appointments. Someday soon I hope to tackle the hill and walk up to the appointments as well.

Hope you are gearing up for a safe and sane 4th of July. Stay cool and out of the bad air as best as you can.

Larry and Sharon

A milestone day today at +28. That bought me a ticket for a bone marrow biopsy that I underwent early this morning. Now will await results. Early answers will come in a day or so with detailed results a week or two later. Because I have had so many bone marrow biopsies over the years, when the early results come in I will have an idea if all my problematic cells are gone, at least for the time being.

Along with the bone marrow biopsy I had my usual blood tests. My scoreboard continues to be good. HCT: 38, Platelets: 145,000, ANC: 1,650. You may be aware that for any kind of transplant be it a solid organ, or a liquid one like mine, the recipient needs to take anti rejection drugs. I am no different and we are trying to adjust the dose of these drugs to keep them in the right therapeutic range without affecting other organ systems. I bring that up because one of my kidney tests, serum Creatinine, has been on the rise lately most likely a function of the anti rejection medication I am taking – Cyclosporine. The team here has decades of experience with this so I will leave it in their good hands to adjust. It is kind of like tuning an old AM radio, you need to get the frequency just right to get a clear signal.

We can sense the Seattle area where we are living is gearing up for the upcoming 4th holiday. Hope you are as well.

Larry and Sharon