AnneMarie Ciccarella’s bravely honest blog chronicles her experiences undergoing eight rounds of chemotherapy, including how it adversely affected her brain and ability to function, an often unreported side effect that many refer to as Chemobrain. She writes about how she’s coped with and prioritized around the fog, discusses the pros and cons of certain medications in the fields of breast..
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!
As my mom begins a new treatment protocol for metastatic breast cancer, I've frequently shared that I understand the need for research across the entire spectrum. Having "skin in the game" across a trajectory that spans from prevention of death, to prevention of progression, to prevention of metastatic disease in early stage patients and extending to prevention of breast cancer in its entirety, I've agreed to play a role as a judge with the Californial Breast Cancer Research Program (CBCRP) in their bold initiative to prevent breast cancer.
Please visit topreventbreastcancer.org to learn more. Submit your bold ideas and let's be the generation that moves this ball forward in a meaningful and effective way so that we might stop this disease in its tracks.
Quite simply, it's time.
Deadline for submissions, January 7, 2019, is just a month away. AND ... Advocates are encouraged and invited to submit their ideas.
The Global Challenge to Prevent Breast Cancer is a competition designed to surface game-changing ideas to help launch an entirely new direction for breast cancer research — focused on primary prevention.
This challenge, sponsored by CBCRP, invites researchers, advocates, and others interested in breast cancer prevention to participate.
Winners will receive cash prizes, feedback from respected researchers, and the opportunity to present their idea to prominent leaders in the field. The most promising ideas will frame CBCRP’s future funding strategy and will be further developed in California with $15 million in grant funding from the program.
Despite significant advances in breast cancer treatment, people continue to be diagnosed with breast cancer at astounding rates — rates that have remained essentially unchanged over the past three decades.
Of the approximately $2 billion spent on breast cancer research each year, less than ten percent is dedicated to prevention research. The opportunity for discovery is immense, and the time for breakthroughs is now.
Know someone whose research is focused on primary prevention? Please DO share with them! I'd like to be up to my eyeballs reading submissions ...
Combining in such a way as to enhance or emphasize the qualities of each other or another.
Combining two or more things to form an effective unit or system.
Based on or in accordance with what is generally done and believed.
Relating to activities that depart from or challenge traditional norms.
Quite simplistically, Words Matter.
Quite personally speaking, we know what has been shown to be effective and we continue to seek better medications to treat the multitude of diseases that fall under the cancer umbrella. There is only one departure from conventional therapy that I believe in and that is participation in an approved clinical trial. Period. End of story. I am in the school of "Snake Oil Not Welcomed Here." That's my disclosure on my personal beliefs.
Last week, I was invited to attend the annual meeting for the Society of Integrative Oncology. The MD's and PhD's from world renowned cancer centers that presented their findings did so using the same scientific methods and with the same caveats that I've seen in presentations at meetings like AACR or the San Antonio Breast Cancer Symposium. The presentations from the podium in the sessions I attended were all randomized trials with control groups. Limitations of each study were clearly outlined. Many of the studies were designed using small groups of people. In almost, or possibly in every case, it was stated that the studies were exploratory in nature and that further studies using larger groups of people would be needed to confirm the findings or replicate the results. That's the way we learn in the world of science. Confirmation and replication are key components and each is essential to guide changes in practices.
Cancer treatment is grueling. Chemotherapy is poison. Radiation burns through tissue. Surgery cuts into our bodies. As we move toward precision medicine, plenty of therapies are more targeted for different patient populations but the promise of precision medicine for every cancer patient is still beyond our grasp. Specialized treatments like immunotherapy which are highly effective in certain sub-types of specific cancers like melanoma and lung cancer, have been shown to be highly effective in many, but in some, there may be serious complications with the treatment. Just listen to the television commercials, there's no shortage of those.
While in active treatment, many people suffer with debilitating side effects. Well beyond active treatment, many of us live with long term or late effects of the treatments we received with the hope of achieving the status of no evidence of disease. It is worthy to note that few treatments are truly curative and the word cure applies to even fewer cancer types. When a researcher states that the patients were treated with curative intent, that is simply a means of differentiating the stage of the cancer in the group of patients on the study.
Most of us have already gotten the memo on the importance of maintaining a healthy diet, the need for exercise, and the importance of sleep to help restore our bodies. Not enough of us, myself included, are able to stick to every aspect of each of these cornerstones but, speaking personally, I try. Not one presentation at this meeting even hinted at the notion that diet, exercise or sleep could prevent primary disease or stop progression of active disease, or prevent local or distant recurrences. No one I spoke with suggested, in any way, shape or form, that we use complementary therapies instead of conventional treatment.
The focus of the use of complementary therapies was as a means of assisting with quality of life issues experienced by so many of us. They were presented as a possible option to make our conventional treatments easier to tolerate allowing us to continue treatment for as long as recommended, or as a way of dealing with long term and late effects. Yes, acupuncture was presented in several of the sessions. Mind-body connections using yoga or other meditative methods was explored and presented. Any and every time, nutritional supplements were mentioned, caveats were included to clearly state that some could negatively impact the efficacy of conventional therapy and that every one brought up by a patient receiving any sort of active treatment should be thoroughly investigated by the treatment team to properly guide the patient.
It is particularly noteworthy to mention that in the studies I saw presented, the researchers showed not only patient reported outcomes using validated measures, but they also showed physiological changes in the things in our bodies that are believed to be driving some of what ails us. Without getting all science-y, the slides showed the same patients that reported symptom reduction in whatever was being looked at, a corresponding slide was presented to show, for example, a reduction in systemic inflammation within the body. Inflmmation is known to cause all sorts of problems.
Other physiological changes were reported and genetic markers were identified in different studies but rather than speak too far above my pay grade, it's best to leave that right there. Yes, that is a gross oversimplification but I am not an MD or a PhD. The point is this: they were able to measure and show a biological change in the body that correlated with what patients were reporting. As a patient interested in the preservation of quality of life in every cancer patient, along the entire disease trajectory, I was impressed by the comparison of what was being reported, the "real-world evidence" alongside biologically measurable observations.
Yet, I'm left with many questions. Why is there such a push-back from so many? Is it a lack of understanding, or the unwillingness to be open-minded about what this group of researchers is trying to accomplish. To disrupt the status quo with "unproven" and non-pharmacological approaches is, by many, referred to a quackery. I saw nothing that resembled quackery. I saw researchers sharing observations and I also saw some of the studies raised further questions worth exploring.
In one yoga study of particular interest to me given my issues with chemobrain, the findings seemed to indicate restorative yoga was a better option than yoga that included more movement. Again, during the presentation, the researcher very clearly outlined that the patients in this study were mostly sedintary breast cancer patients so the findings only applied to this particular subset of patients. AND, they observed that the quality of sleep in the group assigned to restorative yoga was significantly better leading to the statement that the slightly improved cognitive assessments in this group could be resulting from better sleep, not necessarily from the yoga practice, ending with, "more research must be done to answer the question."
In fact, the only thing that was suggested as a possible alternative to existing treatment was a session on pain management and reducing the use of opiods. Given the crisis with opiods, any alternative treatment that might prove effective, in my way of thinking, is a winning combination for a large number of people and addresses what has become a health crisis.
As I was writing this, I saw that ASCO released the results of their second annual National Cancer Opinion Survey and it's very disheartening. According to the press release, nearly 4 in ten Americans believe cancer can be "cured" solely using alternative therapies like enzymes and oxygen therapy, or with diet, exercise, vitamins and minerals. I haven't had the chance to read the entire report but I will. I'm not a fan of press releases. I'd rather read the methods and conclusions as written by those analyzing the findings. The publication is available for anyone to access.
The cure is not in a closet. There are plenty of nefarious characters out there, preying on people at what is likely the most vulnerable time in their lives, promising a cure using some outlandish treatment. Just. Don't. As for the so-called success stories touted by that cast of characters? The biology of cancer is complex and miracle cures, in my mind, could easily be explained as disease that was not aggressive or likely would never have killed the person to begin with. That's my position and that will remain my position, unless and until I am pointed to rigorous trials showing these "miraculous" outcomes in large cohorts of patients.
Bottom line: complementary care is not the same as alternative medicine. The acronym CAM (Complimentary and Alternative Medicine) is best replaced with CIM. Complementary Integrative Medicine seeks to help make conventional treatments more tolerable, enabling patients to finish full courses of therapy with the goal of helping us achieve the best possible outcomes using currently available, already proven to be effective conventional treatments. Alternative Medicine, for this patient and research advocate means unproven, and steer clear.
I just wish that those who so openly and unabashedly attack this entire area of medicine might begin to think a bit outside of the box and realize, patients matter. Management of side-effects matters. In this era patient-centered care, incorporating patient concerns and identifying as many ways as possible to address the concerns of patients is essential to achieve true and meaningful patient-centricity. It's not a buzzword. It's a call to action for both patients and providers, and it seems to me there is a large group of researchers answering that rallying cry. To those, I say thank you. To the detractors, I just make one respectful request. Don't lump everything into one bucket. Those who are researching complimentary care to help with quality of life fully and totally stand behind conventional treatments.
It's time for all of us to get on the same page.
If the words are troubling, attack the words ... not the methods or the outcomes or the questions being posed.
Note: I am closing the comments on this post because this seems to be a highly charged area and I'm not up for moderating the comments or getting into a debate. These are simply my observations. With utmost respect to all, please ... just take what resonates and leave the rest.
Every year, or maybe it's almost every year, I share the same post on this day but the times they are a'changin ...
September 19, 2006.
That was the day my body was forever altered, the day of my bilateral mastectomy. And this year, I am thinking about the ways in which my life changed as a direct result of a cancer diagnosis, the decisions that would come in the weeks and months after that first suspicious finding on my routine annual mammography, and the time after active treatment when I began to pick up the pieces and found myself first here, pouring out my heart and soul before a computer screen.
In a million years, I could never have expected the twists and turns my life would take as a direct result of hearing what has been referred to as the scariest word, bar none, in most, if not every language on the entire planet. Cancer.
There was the waiting. The waiting for the next set of tests, the waiting for the results of those tests, the waiting to see the next clinician in line, the anticipation of what might be said, could be said and in most cases, the reality of what I was told, which was almost always a thing I had not even considered. There is a lesson in there. It is a lesson for those currently in that place and really, a lesson that transcends cancer or any disease, to most every circumstance that life throws us.
As I sit today, more than twelve years after my date with two surgeons and countless of other medical professionals, I am different. I have grown. I am the woman I was always meant to be and yet, my life is still not my own.
I will be in Chicago next week, eager to roll up my sleeves at the SWOG meeting and to see so many of the people who mean so much to me. I will make a side trip to see a few of the people at the Lurie Cancer Center, some of whom I now work with, too. At the end of October, I'll be in Arizona for the Society of Integrative Oncology meeting where I was asked to address a group of advocates about how they might become more involved in research activities.
It's a bit humbling and depending upon what's happening, it can be time consuming. My writing has taken a back seat to more collaborative projects where the patient voice is essential and I'm happy to lend mine when invited. By the same token, I'm conscious of self-care and I strive to do my best to strike a proper balance. Constantly assessing the circumstances before committing to anything is a good tool. It helps prevent things from tumbling down on me while also making sure no emotion blind-sides me because I was too entrenched in a project to feel whatever I might be feeling in any given moment. I think that may have been one of my biggest take-aways from ...
...in June, I had the absolute joy to attend a Commonweal retreat in Bolinas thanks in very large part to the generosity of a donor. That was a life changing event and that is something that Lori haunted me about for years. I can still hear her, "Just get on the waiting list, you NEED this." As usual, she was right. The week was a gift to my mind, to my body, to my soul, to my spirit. I arrived knowing no one and left with a dozen people I am connected to on such a deep level. It's a sacred space, an immersive experience on so many levels and when I find myself frustrated with any sort of nonsense or minutiae, I let my mind go back to Bolinas and I can feel myself surrounded by unconditional love and support. Yes, it was that powerful. Times a million.
On the heels of the retreat, I was home for just a few days before heading out to Durango, Colorado where wildfires were still raging but the hero firefighters saved every structure and managed to contain what seemed like it would be impossible. That allowed Blueprints of Hope to move forward with a survivorship event planned many months prior, where I was invited to share my experiences with chemobrain issues to a group of cancer patients.
In the midst of all of this, life is still happening. Much of it is wonderful. Weddings, new babies, showers to celebrate these life milestones ... each one fills my heart with joy. Some of it is a bit stressful - health issues surrounding loved ones, and a few of my own, too. I can't control any of that. All I can do is be the best helper for those who want my assistance, and deal with my own pesky health issues as they arise.
And then, there is this divorce. I hesitate to even use the word or mention anything relating to that. I know my words are parsed, pulled out of context, and I suppose might be used to turn a simple statement into something that was never intended. My words are, quite frankly, just as they appear. There is no hidden meaning or the need for anyone to attempt that proverbial reading between the lines nonsense. Sooner or later, that chapter will close and there will be no more lawyers, no more court appearances, no more anything and that part of my life will be fully and completely erased.
Emotionally, I am whole again. The reality is in the knowledge that I became whole and true to myself the moment I decided to exit what I now know was an unhealthy relationship that went on for decades. I made misguided choices along the way, but I don't look back with regret at any of them.
If I'm guilty of anything, it is being being true to those I makes promises to, even as I turned a blind eye to the obvious. My actions were borne of authenticity and genuine concern because that's who I am - and when I commit myself to someone or something, I'm all in. Until I'm not. And when that "I'm not" lightbulb illuminates, I learned a bit about myself. I can detach myself without anger or bitterness or any other self-defeating feelings. Just detach, devoid of emotion, moving pragmatically toward resolution.
Being exposed to so many different people from all over the country, I've learned the difference between being valued for who I am and what I bring to any table vs. being used by another. With eyes wide open, I can safely and perhaps a bit defiantly say "NEVER AGAIN."
Life is good. I am grateful for every moment whether I'm doing something in the realm of advocacy, practicing yoga (thank you Apple for adding it as a workout in the update on my watch!), celebrating those life milestones with loved ones, meeting friends, or simply relaxing in my home and the beautiful space right outside my door. The power of healing and the ability to ground me in every sense of the word that I get from the ocean which is always within my sight will never cease to amaze me. Recently, I was asked if I've come to take the vast and magnificent ocean views for granted. And without hestitating for a single second I stated that it's been nearly two years and I still gaze upon the glistening sea every single day with wide-eyed wonderment, and a ton of gratitude that this is my home and that is my backyard.
Yes, I finally learned to leave what my buddy Jack always referred to as that "big bag of shit you're carrying with you" in a box unless and until it requires my attention. Surrounded by ladybugs and dragonflies, feathers and butterflies, and random Neil Young songs popping on the radio, my spirit is sustained every single day by those no longer walking this earth. And then, there is an army of people, some quite close to home, others clear across the country, and yes, even a few sprinkled around the globe, encouraging me to continue walking this path, reminding me that I still have much to accomplish.
So, with a nod to Lady Gaga and Bradley Cooper as I eagerly await the release of the fourth remake of A Star is Born, I suppose I too, am far from the shallow now.