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I Thought I was Pre-Disastered

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By Stephen Feldman – Patient

I was diagnosed with CLL in the spring of 2014. My relationship to my CLL, however, dates back over 30 years when, at the age of 23, I sustained a spinal cord injury that resulted in complete paralysis. What could possibly connect the two? Medically speaking, not one single thing. Psychologically and emotionally, however, there’s a connection.

Over the course of the three decades that I’ve lived with paralysis, I have been fortunate to have maintained robust health. I’m fond of describing my fitness level as that of an out-of-shape teenager, a pretty good place to be for a 57-year-old. I’m not entirely sure how I’ve managed this relative good fortune. Somehow, despite having what is officially described as a “severe” disability (and the physical deficits of paralysis go well beyond losing the ability to walk), I have felt somehow surprisingly indestructible.

One of my favorite movie scenes comes from The World According to Garp starring Robin Williams. Garp and his wife are shopping for a home. Standing outside the lush New England house they’re considering purchasing, their attention is suddenly drawn away by the sputtering sounds of a small propeller plane off in the distance. Their eyes are transfixed as the plane approaches and then suddenly crashes into the second floor of the house. The pilot emerges unscathed and announces that’s he’s OK. Garp, without missing a beat, announces, “We’ll take the house!” Incredulous, his wife, pointing to the considerable damage just inflicted can barely eke out her concern when Garp interrupts her insisting, “Honey, the chances of another plane hitting this house are astronomical. See, it’s been pre-disastered. We’re gonna be safe here.”

In the spirit of Garp, and in keeping with any movie-goer’s willingness to suspend disbelief, I fantasized a sense of magical protection bestowed on me by my paralysis: like Garp’s house I, too, had been “pre-disastered” and was now safe from anything nearly as calamitous showing up again in my life. Don’t get me wrong, I cherish rational thinking, so I recognized this as purely my ego’s daydream, not an actual belief.  Regardless, my rational mind must have conceded a few neurons to fantastical thinking, which let’s face it is oftentimes more reassuring than reality. So I was caught completely off guard when a slightly elevated WBC first noticed during my 2014 routine annual physical led to a diagnosis of chronic lymphocytic leukemia. So much for my sense of magical protection. Alas, to borrow a line from the Dustin Hoffman movie Little Big Man, “Sometimes the magic works; sometimes it doesn’t.”

After decades spent waltzing with paralysis, I had arrived at this moment in my life – and hopefully for future moments as well – relatively well prepared for hard news. I had evolved a measure of equanimity. And while I did not absorb the news of my CLL diagnosis with anything approaching indifference – no white flags hoisted – I wasn’t exactly devastated, either. Please don’t read a defeatist resignation into any of this. At the same time as my tongue was learning to correctly form the words chronic lymphocytic leukemia without getting tied up into a knot (just as it would later learn to untwist foreign-sounding words like the drugs ofatumumab and obinutuzumab), I set out to explore as much about this disease as I could.

True to the CLL Society’s creed that smart patients get smart care, I plowed the internet to unearth as much information as I could. As a CLL hatchling, I lacked the rigorous sophistication required to sort out the relevant information from out-of-date data, metabolizing too much of the latter along the way. But I made many useful discoveries. One particularly fortuitous discovery was the blog of our own Brian Koffman. I reached out to Brian, who graciously responded to my emails replete with newbie questions. (This connection would eventually lead to my becoming the group facilitator of the CLL Society’s Los Angeles support group.)

Similarly fortuitous, while still living in New York City at the time of my diagnosis, and only weeks away from a planned relocation cross country to Los Angeles, I was able to secure a consultation appointment with renown CLL specialist and researcher Dr. Richard Furman. Dr. Furman delivered a very thorough primer on my CLL (I’d already had flow cytometry and FISH studies ordered by the referring hematologist-oncologist) and offered a non-worrying glimpse into my CLL future. He concluded his remarks saying, “My goal is to give back normalcy to my patients. My real job is to just be a cheerleader – to discern those patients who need to worry from those that don’t need to worry.” With the arrival of breakthrough non-chemo medications such as ibrutinib, and a growing arsenal of yet more targeted drugs in the clinical trial pipeline, Dr. Furman offered reassurance for the future – “I’d hate to see CLL become the most important thing in your life.”

Fast-forwarding to the present, I am presently under the outstanding care of Dr. Steven Rosen, my hematologist-oncologist at the City of Hope Hospital in Los Angeles. Though I was still at Stage 0 – OK, maybe “Stage 0.5” – my lab trends indicated that the time to commence treatment was fast approaching. My platelet count had been bouncing up and down below 100. More tellingly, a bone marrow biopsy revealed a 90% cellularity of CLL intruders.

The frontline treatment suggested to me was a clinical trial at City Of Hope investigating combination therapy of ibrutinib and venetoclax. I met the inclusion criteria for the study, however, my health insurance provider, Blue Cross Blue Shield of Michigan, denied coverage for the associated non-drug expenses. Therefore, while the very considerable costs of the medications would have been paid for by the trial sponsors, I would be financially responsible for everything else, including all diagnostic testing (e.g., CT scans), lab work, and follow-up examinations. The aggregate cost of these non-drug incidentals is also not inconsiderable. And there was another risk: Would my insurance cover the costs for any serious adverse effects resulting from participation in a trial that they explicitly did not sanction?

Thankfully, there was a viable and potent Plan B: combination therapy of ibrutinib and the monoclonal antibody Gazyva (obinutuzumab). Both of these medications were covered by my insurance. (Alas, Blue Cross and Blue Shield shareholders would be irate to discover that the claims being paid out for the treatment I am receiving is many magnitudes of order greater than what it would have been had they authorized me to participate in the clinical trial. Penny wise and pound foolish, a cost comparison analysis was not part of the company’s decision making process.)

I started treatment in February. Just one week following my first Gazyva infusion, my lab results returned to virtually normal and have remained that way ever since. Wow! The legitimate ruminations I had about the array of possible adverse effects from these medications have thus far been proved unfounded. I feel 100%. I remain a happy and very in-shape out-of-shape 57-year-old teenager.

So I’m back to feeling indestructible again but keeping a watchful lookout to the road ahead. You know, just in case the magic doesn’t work. But I’m confident it will!

My diagnostic profile:

• del13q, trisomy 12 (NOTCH1 negative), IGHV mutated, ZAP70 negative, TP53 negative, SF3B1 negative

Stephen Feldman is a former Upper West Side New Yorker presently in the CLL protection program in Los Angeles. He is a graduate of Hunter College (B.A. Biology) and Fordham University (MSEd. Counseling Psychology). Stephen is the group facilitator for the CLL Society’s Los Angeles support group at the City of Hope Hospital in Duarte, CA. He lives with his teenage son who is being groomed to carry on with Stephen’s wry sense of humor. Contact welcomed: [email protected]

Originally published in The CLL Tribune Q2 2017.

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