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I’m Brian Maxson, and this is my CLL journey, what’s happened so far and what I’m doing with it.
I was diagnosed in 2016 at age 62. Currently, my flow cytometry markers are good: mutated IGVH, and my CDs are consistent with familial CLL. (My grandfather’s CLL was diagnosed at age 72 in 1982. He died 6 years later of bladder and lung cancer. I’m the first descendant to have CLL so far.) I’m trying to take care of myself and to stay alert about secondary cancers.
My first love was science, but I was even more fascinated by building things from what I learned. I remember being called an engineer before I was clear on what the word meant. At least I knew they didn’t mean driving trains.
I borrowed my first programming book in 1964 at age 10. I didn’t have a computer, and I struggled to learn enough electronics so that I could make one. I quickly realized the paper route wasn’t going to pay for the parts for an interesting computer. (Lest I sound deprived, I was delighted to be designing computers on paper. Paper computers avoid a lot of problems: heat, part failures, test equipment, suppliers, and making a profit.) Seven years later, my high school got a terminal that talked via telephone to a computer in Pittsburgh. I could begin writing programs and actually seeing what they did. The technical term for this opportunity is “hog heaven.”
I’ve been programming and managing teams of programmers ever since.
If I were a moth, then my candle flame would be little technical start-ups. The work is hard and start-ups fail regularly. But I’m drawn to things that haven’t been done before. It has resulted in many, many all-nighters in computer rooms around the country. My wife was the beacon of sanity throughout those times. And now I reward her by making her my caregiver? What’s wrong here?
My CLL diagnosis came as I worked at a little company. I handled the news in the way engineers often do. I postponed worrying about CLL until I’d learned everything I could about it. (Non-engineers will notice immediately that if an engineer is careful about “learning everything they can,” then they can postpone worrying indefinitely.)
My Absolute Lymphocyte Count (ALC) was about 10,000 at the time of diagnosis. It ranged upward to about 13,000 just as, sadly, the little company where I worked entered its death spiral. At the end of 2016, the operational resources were gone. I thought I’d take a couple of months before getting another job. I planned to catch my breath, visit my parents, and sleep. I tried a vegan diet. I exercised, drank green tea, and read, and read, and read.
My health improved radically in just about every respect. My CLL wasn’t changing. It was OK before I focused on getting healthier, and it was OK after. Whether it meant anything or not, the trend in my ALC was encouraging. Instead of dandling around 10,000, it decreased steadily, a trend that lasted almost two years.
So, what part of the change in my lifestyle made the difference? Vegetables? The tea? Adequate sleep? No commuting? Was it perhaps relief from the stress that arises when everybody can see what is happening to a company, but nobody wants to talk about it?
And furthermore, was the change in my ALC just a blip? Or would it remain low? And if it did remain low, would that affect the progression of my CLL?
There was only one way to find out. We had some savings, and my wife loves her work. I could even retire. Maybe I should. In the meantime, I’m a househusband, repairman, honorary member of a friendly dog pack, and full-time student of CLL.
So here’s my current snapshot, a selfie of sorts. I sit with my morning pot of green tea, surrounded by paper. In a bookcase in the corner holds books on Optics, Rodak’s Hematology, Cell Electrophoresis, Experiment Design, CLL (Faguet, O’Brien, and others) and Leukocyte Homing. Books relating to CLL are edging out the programming books, the sculpture books and puppetry. There are five binders of CLL article reprints and a drawer of almost-used-up highlighter pens. Plus, a big stack of articles by my left hand are waiting to be read and filed. Surrounding all of the paper is an assortment of computers and microscopes. The computers work; the microscopes are, um, improving. There’s a rack of jewelry tools for when I can’t face one more article. And wrapping around all of those things, there is a circle of dogs, all currently asleep. I don’t dare move my chair.
Regarding my CLL, I’m still asymptomatic “watch and wait”, with an ALC of 6600 last month. I have learned that familial CLL tends to be mild, so I might be one of the lucky CLL patients who never need treatment. If I stay off of ladders, stay vigilant for infections and other cancers, and stay lucky, my outlook appears pretty good. If I start to show CLL symptoms, fortunately more targeted therapies are being approved every month. I know people who are doing OK on many of them.
Ladders? As my friends in the support groups know, a fall from a ladder in October 2018 broke four vertebrae and seven ribs, leaving me laid up for a few months. It’s noteworthy because an ALC taken 48 hours after my fall showed about 4000. That’s closer to normal than I’d been in nine years. (I imagine that on impact, all my lymphocytes dove into the nearest lymph node crying, “Holy Toledo! What was that???”)
I joked that I’d write a self-help book, “REVERSE CANCER USING GRIEVOUS BODILY INJURY: The simple method you can do at home that your doctor doesn’t want you to know about!”
Within a few days my ALC rebounded, of course, but I’ll save that news for the sequel.
Overall, I’ve been incredibly privileged:
- My worst health problems seem to be the ones I’ve caused myself.
- My CLL will probably progress rather slowly, if at all.
- I have a kind and able caregiver.
- I’ve spent a career doing something I love.
- I’m a white male in one of the wealthiest places on the planet.
- There are two monthly CLL support groups, organized by the CLL Society, within travelling distance.
- I’m part of a community with a wide range of experiences, with enormous amounts of practical information, good advice, and love.
So why not relax? Why am I working so hard? Because it’s time to give something back. I have mentioned ALC several times. It seems to be is the closest thing to a signpost on this journey that those of us who watch and wait can see. But it leaves something more to be desired. I wonder if my background and experiences, some wise friends, and a lot of study could produce something better than ALC. That’s going to be my journey for the foreseeable future.
There’s plenty more to tell about why this is important and how it might come to be. Stay tuned! And support the CLL Society! I do.
Originally published in The CLL Society Tribune Q4 2019.