Back on the Juice

The M-Spike. The best indicator of progression. It’s definitely on the rise.

I’ve been off treatment from my cancer, multiple myeloma, since June. I needed a break. I took the risk. I was walking a tight rope, but I felt good.

Subsequent blood labs show a steady progression of the cancer markers. I figured that sometime, around right now, I would have to get back on the juice. That turned out to be true, but it’s not the juice I’d expected.

In September, I received a message from my oncologist in Hood River. She alerted me that Providence Hospital in Portland had a slot available in November for a CAR-T treatment. Evidently, a doctor, who I’d visited for a 2nd opinion in January, had placed my name on their list of candidates.

At the time of our visit, I didn’t know they had a list. Fortunately, the doctor had my back. While I fretted about a new treatment we had agreed upon, she planned for my future. When the vacancy appeared, my name popped up. She reached out, “Was I interested?” I said, “Yes.”

The CAR-T process.

Suddenly, my dance card for October filled up with screening exams. I waltzed through them. We signed consent forms on October 24th. We collected my T cells on November 10th.

We learned yesterday they are ready for infusion. Day zero is December 19th. Prior to this, I’ll undergo outpatient visits: three consecutive days of a chemo cocktail. The idea here is to deplete the existing T cells. Afterwards, I rest for two days. Then, I am hospitalized to receive the super T cells.

I must spend seven days at the Providence mothership in Portland. Side effects are predictable. The degree of one’s reaction is not. Well established protocols are in place if things go sideways. Should all go well, I am discharged to a hotel in downtown PDX. My wife will act as a caregiver during this period. We must spend the next three weeks within five miles of the hospital. 

I’ll return periodically for monitoring. Sometimes, complications are delayed. It’s possible I could be hospitalized again. In a perfect world, I’ll sail through this as planned and be released to return home in late January.

Cellular therapies are taking off.

Patience will be my friend … I can’t drive for eight weeks after the treatment. The status of my cancer will be evaluated at 60 and 90 days.

So, what’s the goal: years of remission, a cure? I don’t know. It’s not just about me. The real story is the science. CAR-T has transformed the fight against blood cancers. Admittedly, it’s still a somewhat blunt instrument. Yet, what I’m about to undergo is also pretty cool, a science fiction level adventure. The innovation portends a future with more durable therapies. But, I’m 76. My future is now. We have an opportunity. We’re all in.


39 thoughts on “Back on the Juice

      1. I’m glad you got the book. We’re doing well. Like you, perhaps not as much, I am excited about you forging forward into the frontiers of science. Safe travels.

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  1. All glory to the innovative researchers, physicians and Bravehearts, following the science, forging ahead! “Things are only impossible until they’re not” – Captain Jean-Luc Picard

    All the very best, Voyager!!!

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      1. John, it is your previous doctor. I saw a recent article on CAR-T and was thinking of you. I googled you and found this blog. It was a privilege helping to care for you and I hope you are well.

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  2. I’m so glad you get to have this! A new lease on life. I wish my hubby had been able to have something like this, but it wasn’t to be. You are in great shape for a great outcome!

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    1. Hi Ann. Thanks for commenting. CAR-T has been available since mid-2021. There’s a bit of a backlog on getting the product. I was lucky and kind of fell into a slot. 🤷‍♂️

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  3. I am thinking of you and sending good energy and vibes. I admire your positive attitude and courage. Your wife must be a lot like you: brave, strong, and wise. Hopefully, somewhere along these next few weeks, you will feel like writing a post or a song to let us know how you’re doing.

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    1. Hi Nancy. Thanks for commenting. Yes, My wife is brave, strong, and wise. I’m writing from the infusatorium at the hospital. All hooked up and undergoing the first stage of the procedure. Feeling good!

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  4. Ron and I just read your plan for the next 2 months or so and we want to send you our hopes for the best possible outcome. You’re strong and resilient and have battled this foe like a super hero. Science just blows my mind! Our love and remote hugs to you!

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    1. Hi you two. Thanks for commenting. We are settled into a hotel in PDX. It’s comfortable and close to Providence. Starting the process today. Feeling good and ready to go. 🤞

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  5. Man, you really know how to have fun over the holidays!
    Seriously, dear friend, we are rooting for you. Seems like you’re the perfect candidate for the next breakthrough.
    Hope you can feel all the love and hugs coming your way from Woodinville!

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    1. Brian, thanks for commenting. We are taking off for PDX today. Quite the adventure ahead for M & me. Yet, it pales next to our escapades in the Sierras. Many of those happenings are classified info. 🤐

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  6. Oh my gosh, John. You are such an amazing person to share all of this. I still am the only living witness to your hole-in-one. I think it was about this time of year, right?

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  7. Thinking of you here John, remembering our meeting in Seattle (at the VA) when you were going through the treatment there. I hope this treatment will go as well.

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  8. John, your honesty and bravery continue to amaze and inspire others! Sending strong, positive vibes to you and your wife! Know that many, many people (besides the scientists and doctors) are pulling for you. Writers, poets, songwriters, and other artists wish you all the best. Sending you love and hope!

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    1. Thanks for commenting Ginger. Things are moving right along here. Finished pre-T cell chemo today. Managed it ok …🤔. Now a couple of days to rest.

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  9. John, so glad you are afforded this opportunity and the doc had your back. The process sounds very similar to Seattle all those years ago. I will be sending you and Marilyn good vibes and positive thoughts. Much love.

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    1. Cheesecake, how wonderful to hear from you. Thank you for commenting and the good wishes. Marilyn and I are making the most of our stay in PDX. Went to see The Fableman’s today. Fun movie!

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  10. John, We’ve never met but I found your site when I was diagnosed with myeloma two years ago. You are a calming voice in challenging weather for so many of us. Wishing you the best as you embark on your CAR-T journey. Kind regards, Rob

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  11. Now that the Lost Balls have packed it in for the winter, we can feast on your thoughtful words of wisdom. Keep hitting them straight John.

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      1. Surgery went really well. Up and walking immediately after surgery. After 7days now I am able to walk without a walker. I have to be careful not to over do it. Cheers

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  12. The science of CAR-T is a fascinating journey into the spirit of science. You are on a cutting-edge adventure, and wish this to be a smooth and successful journey.

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