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Heading to Seattle: My Best Chance and Place to Knock Back my Nasty Chronic Lymphocytic Leukemia (CLL)

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I have taught others when I speak on self-advocacy that we must make life changing decision with conflicting advice and incomplete knowledge.

Now I must listen to my own counsel.

CAR-T – Chimeric Antigen Receptor T cell therapy is my next best move, even if it is a controversial choice.

I am not looking back. I am only looking forward.

More on how I made that decision later. More on my choice to enroll specifically in the JCAR14 clinical trial for CLL at the Seattle Cancer Care Alliance (SCCA). I will be patient number 36.

One has died. Most have done well.

This post is not about that decision or those details.

It is about my practical preparations for moving to Seattle for two months.

The home situation with the pets and the plants is easy. Our family is already there all the time.

But finding a new home for about 60 days has been more of a challenge.

First issue to be addressed: where to live?

We got much helpful advice from the trial team and locals, friends with and without CLL.

I am required to stay close to the hospital, because bluntly I can get real sick real fast.

And traffic in Seattle can be challenging even when one is feeling well. Every CAR-T patient and the docs I spoke to recommended choosing proximity and convenience over an Air B&B with a great view or charming character or in a hip neighborhood.

So, my wife and I will be camping out at the Residence Inn just two blocks from the hospital, at least to start. Nothing jazzy, but very practical. We will bring our jazziness with some good music and a very cool Bluetooth JLAB speaker.

The Inn meets our other major criteria. It has a real kitchen with a fridge, an oven and a cooktop. It has a microwave too, but we won’t use it. Vegans like me need to be able to bake, cook, and eat at home, as much as you can call a hotel, home.

It has an extra bedroom if my adult children come to visit and a table that seats four for dinner. That makes it homier.

And it has a gym and indoor pool and I love to swim.

Which brings me my next prep.

I have been swimming daily. It’s been unusually cold in SoCal and most of my laps have been done after the sun has set, but swimming is my medication and my meditation. I get in the zone and I am gone, until it’s time to climb out of the water and hurry the cold and into a steam bath. Such a pleasure.

Too long have I neglected my own fitness for long hours at my clinic or with a computer in my lap for the CLL Society.

For the next two months, my mission is to stay alive. My mission is to get to MRD negative, and I want to give myself every advantage.

That means keeping my eye on the goal, and trimming away the distractions.

March 1 will be my last day of patient care until my return to the clinic in Diamond Bar in May. That feels awkward, and wrong. I love my patients, but the medical group admin has hired 12 new doctors in the last two years and 10 have left. We are desperately short of providers, especially experienced providers, but I need to let go. For four decades, I have defined myself as a family doctor. Stepping away, even for a couple months seems selfish, but my group’s stringent policy demands that I cut all ties with the office while on medical leave and I will abide.

The CLL Society is a wonderful creation and has become another huge piece of my identity. I am proud and grateful for the opportunities it affords me to touch and be touched by others dealing with chronic lymphocytic leukemia, but it can be all consuming and demanding. There is unmet need 24/7. There are endless to do lists, unanswered emails and missed opportunities. There is always more to do.

My approach will be more balanced in Seattle. No more research and posts at 2 AM.  No more sitting at the computer for hours at a time.

Another piece of my prep is to go back to my cancer blogging roots. The CLL Society exists today because of my now mostly dormant blog ( that I started over a decade ago that has been viewed more than a million and a quarter times. If you don’t know of my blog, please check it out to see another side of me

My blogging has always been more about blood and guts than about genomes and small molecules. It was my story, and I am returning to the therapeutic joy and anguish of writing in near real time.

Yes, we will still report the news and explain the science. Science and education is in my DNA. But so is writing. And this blog will be my priority for the next 60 days sharing my internal processes and observations as I start on another amazing adventure.

Set and setting are critical to success. I am working on mine.

So, welcome aboard. Hold on tight. This could be a wild ride, but one from which we will all emerge stronger, smarter and at least one of us healed.

I will need your support and encouragement. Please share your thoughts and comments. If you can, please support our nonprofits efforts.

Stay strong.

We are all in this together.


One Response

  1. I wish you a prompt successful response to your clinical trial , hoping to meet you after your safe return in May ,
    Good luck ,
    Sam Sayegh

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