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Waiting and Preparing for CAR-T therapy to decimate my CLL

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Patty and I have been in Seattle for almost two weeks now.

I have had multiple blood tests, a last-minute cheek swab of chimerism, a bone marrow biopsy and aspirate, a chest x-ray, echocardiogram, and ECG. And of course, my apheresis to gather my T- cells. Tomorrow I get my PET/CT and then my staging is done.

I have few results to share other than my count of cancerous lymphocytes is not taking off and my platelets and hemoglobin are not bottoming out.

Except for a slightly elevated LDH that reflects increased CLL activity, my blood chemistries are within normal range.

The chest x-ray and ECG all looked fine to me, as did the echocardiogram, but what do I know. I have not seen the reports from the cardiologists and radiologists yet, but I will give them a hard time if they don’t declare me completely healthy.

Except of course for having relapsed, refractory chronic lymphocytic leukemia.

The echocardiogram is done to check my heart function, specifically the amount of blood pumped out with each contraction or ejection fraction (EF), to make sure that it is safe to have the chemotherapy necessary to knock back my T-cells to let the new engineered T-cells grow and do their job. Some chemo is hard on the heart.

My heart looked like it was working fine to me. No thickening, no valve issues and good EF.

Truth is that I have little official news to report.

I am much more tired than I should be as I am only mildly anemic, and really not much has happened yet that should cause fatigue.  I have been going to the gym but not swimming to try to improve my energy level. And if needed, resorting to dark chocolate.

We have set up household here at a Residence Inn near the SCCA/Hutch hospital with the help of Amazon prime, Whole Foods Market, gifts from friends, Uber and Lyft, and some great vegan restaurants.

And here is a secret: I HAVE EATEN WILD CAUGHT SALMON to build myself up for the oncoming challenges. The salmon here is fresh, wild and wonderful. I enjoy every bite, but I will return to my vegan ways when I get home.

More on my CAR-T plans and details later, but for now let me just share some of what we have experienced in our first two weeks here before I am on house arrest starting in 10 days. Once I get the CAR-Ts I need to be within 30 minutes of the hospital, avoid crowds and restaurant food.

I have forced myself to walk almost every day. And Seattle and the environs has stirring places to walk that soothe the soul and prepare the body for battle. This is just a small sample of some of our sojourns.

I promise more substantive posts soon, but getting mentally, physically and spiritually prepared is critical. And that has consisted of establishing a home base, resting more, exercise and walking in nature. And a ZOOM call with the family.

Magical Hoh Rain Forest with snow in Olympic Peninsula

Ruby Beach in Olympic Peninsula

View from Kalaloch Lodge at sunset in Olympic Peninsula

Walk in the rainforest north shore of Lake Quinault

Mushrooms on a fallen log south side of Lake Quinault

Gasworks Park, Seattle

Chihuly Gardens and Glass in the rain, Seattle

Japanese Gardens, Seattle

U. Washington Arboretum, Seattle

Spring daffodils and violets on our urban walk, Seattle

Modern Family Portrait using ZOOM

One Response

  1. Welcome to Washington State. I live on the Olympic Peninsula and some of your photographs are from the Far West beaches. I hope someday you’ll be able to journey here, relaxed and healthy. I am in the rain shadow where we only have about 17 inches of rain a year. You are where there’s about 35 in Seattle. And the farther west you go the more the rain because of the Hoh rainforest. Kalaloch is a great place to get a cabin and be able to down walk those wide beaches and watch the Eagles soar above. On the way is Port Angeles where you could take the Coho Ferry over to Victoria, Canada and have a fabulous time. Everything is within walking distance. You can park on the Port Angeles side and go on as a foot passenger. In a future year, come back for the Lavender Festival, which brings a lot of traffic to this little vicinity, but the Farms are gorgeous and the entertainment is fun. These are all things to look forward to. Thank you for sharing your CLL journey. I really appreciate it.

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