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I haven’t posted in a while as I have been too busy celebrating my new status. And packing to go home and unpacking after more than 2 months with my cancer road show.
What I am celebrating?
While it far too soon to even consider the C- word- CURE, I can no longer honestly say I have CLL.
This glorious news demands a whole new way to view my life. Can’t be business as usual. Moments like these are rare in life and must be savored and recognized for what they are: A chance to reboot and repurpose my life.
I lost more than the ability to say I have CLL.
There was a physical loss as well.
I dropped away pounds of tumor in the form of the innumerable lymph nodes (to quote the radiologist) that was shrunken back to normal, the bone marrow that now shows” several areas of focal ghost cells and debris suggestive of prior involvement with chronic lymphocytic leukemia” (to quote the pathologist) leaving my marrow’s cellularity patchy as clear sign that a great battle has been fought and won and the enemy soldiers have now fully retreated, and the peripheral blood that show 1/30 of the number of lymphocytes that I had before this all started.
It passed out as does any other waste in our body: in my urine and stool. And my tumor burden was light to moderate. I feel lighter. I need another notch on my belt.
Truly a weight has been lifted.
After 12 years of dealing with CLL, fighting it, cajoling it, and trying to ignore it, I can no longer say that I am dancing with that capricious bear.
I am encouraged that 10% of my lymphocytes are the engineered T cells at 3 weeks post infusion. There are probably many more hidden in the nodes.
They are out there hunting for any stranglers.
There is speculation (no hard data) that the area under the curve, in other words the longer and higher is the CAR-T expansion, the better the outcome. Makes sense. I like the idea.
I will soon shift my focus to what I need to do to keep those chimeric (part rodent) T-cells happy and long-lived in order to prevent the return of my nemesis. Let me be clear, there is no scientific data that anything helps.
I will consult my rheumatologist about what I can do to walk better and with less pain.
I will make decisions around the conflicting information about how to treat an asymptomatic small pulmonary embolism (blood clot in the lung) as I already have an increased bleeding risk from ibrutinib.
I will eat more Cajun Gingerbread to build up my depleted iron stores from all the bloodletting, AKA, lab tests over the past 60 days.
I will miss the wild salmon so ubiquitous in Seattle as I get back to my Socal vegan ways, but I can rebuild my weight with home cooking.
I will start swimming and frequenting the gym now that the PICC line is out of my arm in order to regain my strength and wind.
I will reexamine my life and decide what this second chance portends, but right now we are still in celebratory mood.
And as so many of you have been there with me and my family in the highs and the lows, like the Beatles who sang” we’d love to take you home with us, we’d love to take you home” I would love to share some of our amazing non-stop fun.
Much of it involved eating – mostly salmon. One example is Ivar’s Salmon House, built in 1938 to resemble the First Nations’ longhouses. The salmon is cooked on alder planks.
We also ate their original recipe fish and chips outdoors at their Pier 54 location.
We took a ferry to Bainbridge Island where we saw specular views of Mount Rainier.
On the island, we took a “forest bath” on Bloedel Preserve.
We toured an old “mosquito boat” that plied the waterways nearly a 100 years ago and was the way mail and people and goods were transported in Seattle in the early 1900s.
And we took a short scenic seaplane trip taking off from Lake Union, just a short walk from the cancer center.
We would see the planes landing and taking off every day and a 20-minute scenic loop over Seattle seemed the fitting way to remember our journey and a city we grew to love.
Boeing built his first plane on Lake Union, a seaplane.
The take-off and landing were so soft and the low flying plane with ‘above the window’ wings (a Dehavilland plane- the Canadian company was based near where I grew up in Toronto) reminded us what a thrill and joy flying can be.
And we are still flying.
Hope you all get to join me.