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Swimming, joy and sadness and MRD negativity

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Those who follow me know how inspired I am by Stan Kurtz’s 22-mile swim from Catalina to Palos Verdes overnight Aug. 4-5, 2018.

Stan 12 hours and 22 miles into his swim nearing Palos Verdes and terra firma.

You can read more at his GOFUNDME page. It’s not too late to support his amazing effort.

It is also not too late to be inspired and swim!

So I not only wrote a check, but also I started to swim, not 22 miles in one go in the Pacific Ocean, but about 9 miles over the last 30 days by freestyling 10 to 20 laps at the local Olympic pool. I am there about 3 out of 4 nights and am disappointed when I can’t make it.

Sometimes I am so tired after work that I take a nap, then wake up and rush to the club before the pool closes at 9:30 PM.

My persistence is paying dividends.

I am putting “yards on arms” and legs and my whole body has changed. My arthritic knees hurt less, my walking is better, I am less winded, and I am in the best shape I have been in since my 20s. Just ask my wife.

It is meditative and restorative- when swimming, I can’t think of anything but kicking and stroking and breathing.

I always have more energy after.

If time permits, I take a long shvitz or steam bath after in the men’s locker room. I do some exercises in the buff and relax deeply.

Then I shower, head home and rehydrate, and usually get back to work.

It is a great rhythm. Laps in the pool is my yoga and TM rolled into one.

Stan’s swim, Stan’s not saying no when it would have been easy and understandable to beg off his training, has pushed me.

Maybe he can push you too. Think about it.

It is good that I swim because I need the emotional resilience to cope with the rest of my life.

The other day within the same 5 minutes I learnt that a dear friend with CLL who after an emotional rollercoaster, shared that her treatment had exceeded all expectations. There was no evidence of CLL in her bone marrow. I was so happy that I was close to tears.

5 minutes later and I was crying for real. I heard from the husband of another long time CLL friend, this time a 35-year-old mother of a 10-month-old daughter, that she had lost her short and vicious battle with Richter’s Transformation. Gone in a few days in the ICU with multi-systems failures.

CLL is still a killer.

CLL doesn’t always play nice.

But it has played nice for me recently. Though I still very mildly anemic, my iron levels are back to normal, my CBC is basically within normal limits except my absolute lymphocyte count (ALC) that is too low at 0.6.

I am not complaining. With an ALC that low, there isn’t much room for a cancerous clone.

And I just learned in fact, there was no room.

The flow cytometry done on my peripheral blood that looks at the cells’ surface for its immunophenotype, its fingerprint, found no CLL cells, no clonal B lymphocytes. That test is accurate down to 1 in 10,000 cells.

That is great news. No measurable cancer 5 plus months post my CAR-T infusion.

But wait, there’s more.

It also found no B normal cells. All my B cells, cancerous or benign were missing in action. While this does mean that I am at higher risk of infections due to extremely low immunoglobulin levels and I need to get my borrowed pooled antibodies by IV infusions (IVIG) more frequently to stay safe, it also suggests to me something even more profound.

The only reason that I can think of for the disappearance of all my B cells is that my CAR-T cells are still active, wiping out anyone and everyone with a CD19, a B cell surface marker found on all CLL and all normal B cells.

And the longer the CAR-Ts persist, the better.

At some point, they push the disease burden down so low that it is not only below the level of our technology to detect it, it is below the level where it can ever rise again and cause me trouble in this lifetime.

The next step is a bone marrow biopsy where I hope to have not only have flow testing but also next gen sequencing that it touted to be able to find 1 in a million cancer cells.

If that too is negative, then my CLL is in a deep deep retreat.

We can talk about what happens then, but for right now, I have enough grief and joy to handle.

Stay strong.

We are all in this together


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