I've been in hiding with my secret since May 4, 2017.
How is it possible that I even remember the exact date??
Well, it goes something like this ...
Technically, it started in September of 2014. I received an email from someone asking me about chemobrain and my ongoing challenges. We went back and forth in a series of emails and then, I dropped the ball. Shocking? Not so much given all of the circumstances ...
Fast forward two and a half years ...
April 2017 ... Another email from the same person. It was in the midst of AACR 2017 followed immediately by a date at USC to do some work on CancerBase. Although I didn't know it at the time, those ten days would be the last time Lori and I were involved in any projects together. Then, I was off to the spring SWOG meeting. Throw in some divorce related nonsense, sprinkle in the move from a rental apartment to my condo which was in final renovation stages - and it was a recipe for a month of commotion - not necessarily a great combination when one's brain isn't firing on all cylinders. I was all over the place - literally and figuratively.
However, this time, I didn't drop the ball in my correspondence with David and his questions about my lingering, and at times, debilitating cognitive issues. We set up a video call and I was intrigued by the things he shared during our first conversation.
He offered to send me products he felt might be helpful. I agreed to take a look. A bit skeptical, yes, but desperate times called for desperate measures. I was at a point where I was ready to try adderall or provigil - both pharmaceutical products, either would be "off-label" use, both come with side-effects. I was finally untethered to the dreaded pill case. Just months earlier, I completed nearly ten years of femara and I was grateful to be done with the need for any sort of prescription drugs. Thus, there was lots of hesitation to seek out yet another medication.
Within days, a box arrived. The labels were on the bottles and lots of literature was included inside the package. They were nutritional supplements. Fully prepared to toss them aside if I saw anything that was over the top, yes, I was skeptical. I studied the materials he sent, looked at the ingredient labels to see if anything in the products was what I would consider to be a mega dose. I'm not one for vitamins or supplements in any dose so I wasn't about to start mega dosing anything. I put on my research advocate hat and began analyzing everything.
We spoke again and on May 4, I began taking the supplements. The only request David made was that I make an attempt to document anything I might notice - the good, the bad, the ugly. Just keep notes. I seem to recall thinking, "Notes of what? I can't remember to keep notes and even when I do, I have no earthly idea where those notes might end up - buried under a pile of other 'notes' ..."
I first realized something was different when I had to decipher a massive amount of paperwork. It need to be sorted through, analyzed, put in some sort of logical order for another person to be able to easily understand. I cleared a workspace and dumped reams of paper in front of me. I began sorting, analyzing, making notes, coding each batch of papers. Normally, when I began this type of project, I feel the anxiety begin to well up. There were times I would feel myself starting to shake, yes physically shake, because it was all too overwhelming. On this day, just weeks after starting the supplements, I intuitively went from one batch to the next. I don't know how long it took but I do know it had to be less than two hours. And I know this because I had a list of errands to run. The list involved running all over my new neighborhood with a mess of unrelated stuff. What began at noon at my counter concluded before 6PM.
The pile of papers was neatly organized complete with a master list on a single sheet of paper with numbered bullets. Every errand was done. A couple of hours later, I was sitting on the sofa, jolted by my brain screaming, "WTF??? What happened -- how did you do all of that today?"
Before the supplements, I tried everything. I enrolled in clinical studies evaluating brain games, exercise, sleep, mindfulness. You name it, I tried it. Nothing was helping me in the real world. Yes, I may have gotten better at the brain training but it wasn't translating over to helping me with my life activities. Yes, I'm conscious of the importance of sleep and I try to maintain a routine sleep schedule. Mostly, I'm successful and achieve a minimum of 7.5 hours of sleep. I practice yoga - the stretching helps and my instructor continues to incorporate mindfulness into my practice and during the practice, encourages me to remember the importance of connecting with my breathing. Despite every suggestion out there for cognitive improvement, and I faithfully stuck with every one of them, none helped with the real world situations that always arise on a daily basis. The real world is called life.
Those of you who know me well, also know I'm very involved in research advocacy. I don't know how or when the products I'm taking will be part of a research study. I speak to David and his wife, Michele on a fairly regular basis. There is a group of us who have been the "guinea pigs" - in a most unscientific fashion, just using our notes building a body of anecdotal evidence. We know cognitive issues are real. There is a growing push to understand why this happens so we can find ways to address these problems.
With so many different factors: type of cancer, drugs used, surgery and anesthesia, long term maintenance medications, normal aging ... there are many areas to explore. I know plenty of people in the research world who are doing just that. Many have put forth proof that the condition is real using brain imaging. And far too many are dismissive - some because they have no concrete solutions and others who choose to believe this massive disruptive fallout is a convenient excuse we might use because we *failed* to get things done. (Note to the latter group: we didn't FAIL. We either forgot or simply could not accomplish and our frustration with ourselves is bad enough - in other words, validate, don't criticize!)
Without going into all of the research, let's just leave it at this. Physiological differences continue to be observed in cancer patients. Cancer Related Cognitive Impairment is a phenomenon that stretches to persons who were not treated with chemotherapy but "chemobrain" seems to be the term that is most widely used.
So what's my secret? The supplements are "multi-targeted nutritional supplements" and they have helped me in ways I can't even describe. I won't speak for the other "guinea pigs" except to say most all of us feel like things are better. David, whose story and background can be found on his newly launched website chemobrain.com, is brilliant. He's conscientious about everything he does and was intent on improving on the products I've been taking, and then, making sure he put together a trio of products that makes sense and addresses brain health, vascular health and gut health. With a leap of faith, he decided to seek out the best and the brightest to manufacture the products and launch his own company.
This isn't intended to be an infomercial or a medical claim. This is simply me, sharing my personal experience. Will it work for you? I have no idea - I just know there's nothing else out there that was helpful or provided meaningful improvement for me until I started taking the supplements. David and I frequently talked about this: Could it be this simple? And his acknowledgement that it may not work for everyone but even if it works for a small percentage of people, that number would be substantial given the number of persons living post cancer treatment with cognitive difficulties.
As for my next steps, I'm determined to find someone - anyone - several someones in the research community who might be willing to study this to see if clinical findings and any biological markers or neurological imaging matches patient reported outcomes. We both know the way to do this is with a randomized study but those take lots of time and lots more money. David took a leap of faith by launching the products. I do know he would have preferred to have these rigorously studied first but life doesn't always play out the way any of us would prefer. Instead, he chose to take this leap of faith because he believes in the products and he genuinely wants to help those of us who might benefit.
Cancer treatment is grueling. Having to accept a "new normal" is a hard pill to swallow. I was far better at life with the "old normal" brain and that brain seems to be back.
I am not employed by TheChemobrainCompany and I have not received any compensation from David and/or Michele Salo or from their company in any capacity whatsoever.
David has been sending me the supplements at no cost to me for almost two years. In the spirit of full transparency and total honesty, I share that with all of you.
Last but not least, I will be on and off the grid a bit over the next couple of days - family issues and "stuff" that requires my physical presence. Comments will be responded to as soon as I possibly can. Meantime, please play nicely in our sandbox!
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