It's Time #ToPreventBreastCancer

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.

Read more from the director of the program Dr. "Mhel" Kavanaugh-Lynch.

A quick overview:

• 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 ...


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Complimentary V. Alternative Medicine: Yes, It's Different ...

First some definitions and then, a few thoughts.

Complementary:
Combining in such a way as to enhance or emphasize the qualities of each other or another.

Integrative:
Combining two or more things to form an effective unit or system.

Conventional:
Based on or in accordance with what is generally done and believed.

Alternative:
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.

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Focusing Forward and Breaking Free of the Past

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 ...

this ...

...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.    

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CLINICAL TRIALS: Should you, Could you, Will you?

May. National Cancer Research Month and having somehow morphed into a research geek, deeply passionate about the need to educate, to share what I've learned, and hopefully to dispel some of the things I hear, let's dig in.

First, a disclosure: This piece, presuming it is coherent and cohesive when complete, will be submitted to Clara Health's Patients Have Power Writing Contest. Yes, there will be prizes awarded and no, I don't expect to be the recipient of one of them.

However, I am *All In* with any initiative by any organization designed to shine a light on the need to help all of us understand that breakthroughs in medicine only happen through research, and research means conducting clinical trials. Above all else, clinical trials don't happen unless patients are stepping up to participate in trials for which they may be eligible.

Did you know, depending upon where you look for the information, a mere 3-5% of cancer patients participate in clinical trials? Let's look at the flip side. More than 90% of us may be walking around with answers locked inside our bodies which begs the question: "WHY?"

The truth is, there's no one simple answer. It's complicated. There is room for much improvement in every aspect of the process. A quick search on clinicaltrials.gov shows there are currently almost sixteen thousand trials across all diseases being studied that are currently recruiting, or are nearly ready to begin to recruit patients.

There's the first problem. How can any one doctor or office be expected to be fully versed on what trials might be appropriate for a particular patient? Then, if the trial is being conducted in a place that is outside of the doctor's office or institution, and presuming they are aware the trial is ongoing, would they suggest it as an option at the risk of having their patient seek treatment elsewhere? I have no answers but this is one place where an engaged patient, or a loved one acting on their behalf, might have impact.

Trolling through trials, however, is something most of us are not equipped to handle without assistance. It was years after my active treatment was over before I even learned that clinicaltrials.gov existed. The site was recently overhauled and it is now easier to fine tune the results but it's still an overwhelming process. With a host of other clinical trial matching services in play, there are other ways to search, but the space is still evolving making that a post for another day. The quickest answer I have for this, Just ASK. Don't wait for a red carpet rollout or a hand-engraved invitation, ask your medical provider if s/he knows of any ongoing trials, or if they don't personally know of any, ask how you might investigate on your own.

Having just made a suggestion, let's first acknowledge one thing: Disease Shock - as this leads directly to the next problem. When the word "cancer" is spoken, and you happen to be the person in whose body cancer has taken up residence, most of us become mentally crippled for a period of time as we attempt to navigate an emotional minefield that nothing can prepare us for. Speaking personally, when I showed up for my post-biopsy appointment in July of 2006, I knew. The night before the appointment, I just knew I was getting bad news the next morning. Knowing, and then hearing those words - anticipated fears now a reality, all I can say is that is akin to entering some sort of alternate universe.

I was armed with a list of questions. I asked none. I recall the doctor gently and kindly asking me with a bit of surprise if there was anything I wanted to ask her. Thankfully, my mom was beside me and she asked the most important questions about the immediate next steps. Not once did anyone in that room mention clinical trial participation as a treatment option. Even weeks later, at my first appointment with my oncologist when I learned I would need chemotherapy, I was still reeling and again, it was my mom and my very dear friend seated with me - taking notes and asking questions. Aside from asking if he was planning to test my tumor to help inform chemotherapy decisions using what was then newly available (Onco-Dx for the curious among you **), I was still in the cancer-mute phase. And again, participation in any sort of trial was never mentioned.

Fast forward, five years post-treatment: Early research findings were being presented at the annual San Antonio Breast Cancer Symposium. Watching from afar thanks to a lively twitter feed, I learned there was a trial for which I would have been eligible and one in which I know I would have participated. When I was finished with chemotherapy and the last big surgical procedure to have my temporary implants exchanged for the long lasting version was quickly approaching, I had a lengthy discussion with my oncologist regarding the need for medication for the next five to ten years. We discussed the risks and the benefits of each of the different drugs. My choice was a drug that is known to cause bone loss thus increasing the possibility of bone fracture. I clearly recall stating that I'd deal with a broken bone to reduce the risk of a cancer recurrence. The latter was terrifying. The former, in my mind, was just a plaster cast.

He never told me there was an open trial, currently recruiting patients just like me. The site of this particular trial was at a neighboring institution, just miles away from the hospital where I was being treated. The trial was designed to see if the addition of a second drug, already widely in use, would help mitigate problems associated with bone loss frequently seen in patients on certain post-chemotherapy medications including the drug we had decided was the best option for my circumstances. In the course of the study which I only learned of years later and did not participate in, there was an unexpected and far more important benefit observed by the research team. While the primary aim of the study was to assess whether this helped prevent bone loss and then, seeing how this may (or may not) have helped minimize fractures, they saw a reduction in the spread of cancer to the bones in the patients who began receiving this "add-on" treatment. It was an unanticipated finding and one that was a pretty big deal. Because of that observation, new studies have since been developed and are ongoing to validate those observations.

And what happened to me? Well, I had to fight to have this medication administered. Medically and technically, it is to address my ongoing bone deterioration. It is approved for use in osteopenia which, for the record, I was diagnosed with before I learned of my cancer. Had I been asked if I wanted to learn more about a possible study, I know I would have said yes. If I were more savvy, I would have been searching for possible trials, even though my cancer was found early.

I never asked, and no one on my treatment team ever uttered the words "clinical trial." Back then, I don't even know what I grasped of the research landscape. I'm sure, like so many still believe, enrolling in a clinical trial is the proverbial Hail Mary pass: Participating in research is only for those who've run out of all approved treatment options. Not.True. (Mostly Not.True.) Ditto that all too familiar phrase uttered by many, "I don't want to be a guinea pig!" or "What if I get stuck on the 'sugar pill'?" both of which are typical and understandable statements. Until we understand.

The single most important piece of the clinical trial process? Informed consent or, in a far more patient-focused world, I prefer to call this educated consent. That language makes it crystal clear that true understanding is at the very heart of any, every and all decisions along the entire process that may lead us to choose to participate in a clinical trial. What are the risks of participating? What exactly are you planning to do to my body? Who's paying for it? How much time will this require above my normal visit schedule? Center Watch takes an in-depth look and provides a plain language explanation of clinical trials and the different phases, informed consent and contains a wealth of additional information. It's worth the trip.

Technically, we are adding to a body of knowledge so in a sense, personally, I have no problem referring to myself as a lab rat. We may derive a benefit, we may not. Here's the thing and it's something that is a critical piece of this entire landscape. When there is a treatment that is known to be the best (or, in plenty of cases when there are a number of approved options) for any given disease, it cannot and will not be withheld. There are so many rules and regulations in place to protect the safety of everyone who chooses a clinical trial as a treatment option.

So, are you really a guinea pig? Not so much. The research and clinical community is generally studying things like adding a new drug to combine with the drug that you are likely already taking. Or, they may be studying things like increasing the dose. In both of these cases, they are trying to determine if a different dose or the addition of a new drug works better than what you are currently on. Said another way, they are *not* taking away what works - that would be unethical and it's simply not done. Even in those for whom there is no available treatment option, still, they aren't taking away anything. Sadly, there are too many subsets of patients who've run out of all treatments or who never had any available treatments to begin with. They are seeing if they can make the drug work better (or at all), or attempting to reduce side effects, to extend life, to preserve or improve quality of life. Admittedly, that's a gross oversimplification but that's the broad overview.

If some people are going to be on the real drug and others are going to be on a placebo (aka, the dreaded "sugar pill"), should you really care? Well, if that's what's stopping you here's a thought. If you participate you have a 50/50 shot of real drug vs. placebo. If you don't participate you have a zero shot of getting anything new or novel or in the best possible case, a breakthrough. And while I can't state with certainty how frequently this happens, if the research team sees a group of patients on the trial with what appears to be exceptional responses, the trial will be "unblinded" and everyone will be offered the real deal. What else happens? The rest of us, those not on the trial at all, now have to wait, likely years, for the findings to be presented, for the FDA to approve the drug while those of us who didn't want to be the guinea pig or risk being assigned to the placebo get to sit on the sidelines, spectators to what could be the next big thing.

As researchers and clinicians are now well beyond simply utilizing different treatment options and are looking at the characteristics of so many diseases and the interaction with other things happening in our bodies to understand things well beyond my pay grade, I'm hopeful we are at a true inflection point.

Precision medicine is not merely a buzzword. It holds the promise of allowing our clinicians to administer the best available medication in the most effective and tolerated dose, to the right patient, at the right time with the hope of delivering care that will afford the best outcome for each patient. Fulfilling the promise of precision medicine starts with the most basic science. It starts with tissue or fluid donation and continues along the entire trajectory to using new compounds or combinations of drugs, or reducing/increasing dosages, or even changing the dosing intervals. All of this requires rigorous testing before changes are made.

Researchers have ideas. They fight for funding. They develop trials along the entire trajectory - from "first in human" small studies to large post-approval observational studies to determine what is experienced outside of the controlled conditions in the lab to make real-world observations. None of their work can succeed without our clinical partners speaking with us about all of the available options. We must be willing to listen and carefully weigh every option. A substantial percentage of clinical trials are closed each year. They must meet accrual goals within a specified time frame. Closing a trial after successfully obtaining funding, getting the necessary pre-trial approvals in place and then expending funds to set up the lab is a lost opportunity to learn something. The loss of the money used to put everything in place troubles me - the money is gone forever and unless someone finds a way to begin growing a magic money tree, those were precious research dollars. Wasted. And tragic. While I can't provide an amount, I do know it's substantial. Add up the losses and then subtract from the already strapped funding circumstances and we have one of those dreaded "situations," that I do think can be resolved.

I submit that a rigorous examination of trials that were forced to close because of accrual/retention failure as a means to understanding what happened, in its entirety, with the hope of identifying the barriers and finding possible ways to address the problems. Was the eligibility to participate too narrow and if so, could it have been broadened? Perhaps the question being addressed wasn't one that was important to the target group of potential study participants? Maybe the requests being made of the participants were simply too burdensome? Or was it as I mentioned before: the failure to accrue (and/or keep people on the study) was the result of a communication gap; somehow the trial was lost in transition between the lab to the clinic, the clinical to potential, eligible patients. Scientist are the idea experts, determining which questions they believe must be answered to achieve better outcomes for patients. Regulators make sure every "i" is dotted, "t" is crossed. Aligning the goals and expectations of all by including patients in every part of the process may be one way to help mitigate this problem. While I'm on this soapbox, addressing concerns unique to all underrepresented ethnic and minority groups in culturally appropriate ways, might afford more diverse participation, with findings that prove to be much more robust and more accurately reflect nuances across all patient populations.

Clinical trials aren't for everyone but I have to believe, at least in the cancer space, the percentage is far higher than what we are seeing. I do think many more than 5% are willing to step up. While trials are designed with little wiggle room for switching things up, it is important for everyone to remember, simply because you decided to step up for a trial, you can change your mind. You control you and at any point, you are free to voluntarily withdraw from any trial and continue treatment using already approved drugs.

The bonus add on? You will be monitored closely. In fact, the likelihood is that you will be monitored far more closely than you would be if you are not part of a trial. The trial team may determine you must come off the trial if they observe things that are detrimental to you. In a perfect world, the criteria for eligibility should be expanded whenever possible-and that is an area in which I am currently lending my voice for the benefit of the widest possible group of patients. Without getting all science-y, adaptive clinical trials are being used to do just as its name suggests - adapt the trial to the what is being observed in patients by the research team. The I-SPY trials are a great example of this.

We're all in the same ballpark but each of us is standing on a different base. The clinicians are on their base, the researchers on another base, and we, the patients, are on yet another. It's time for everyone to bridge those bases, to begin communicating in ways each may hear and understand so we can hit this out of the park: For ourselves, for the possible benefit of at-risk family members, and for the greater good of all.

(Post script: to the cynics, the skeptics, those who continually insist "the cure is in the closet," you could be right and this may be true. The problem? Until we open the closet door and study what's inside, it will remain in that dark closet with the door firmly shut.)

**As if by magic, recent findings from a landmark trial using Onco-Dx to inform chemotherapy decisions were just presented at the annual ASCO meeting in Chicago. The findings from the TAILORx trial have been splashed all over the media and this is a big deal. The findings will spare many from overtreatment but the key take away for the purpose of this post: a big thank you to the 10K+ women who stepped up to help answer a big question for the rest of us!


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Musings: On Life, Acceptance, Research and Being Enough

"Life is what happens while you're busy making other plans."

The thing is, I've not had a single moment over these past couple of years where I've had the luxury of making any plans. It seems my life is being planned by others ... by the poor judgement and yes, at times vindictiveness of some, forcing me to live in a place of reacting, responding; by the needs of loved ones that require my attention and/or involvement, something that I do without a scintilla of hesitation and with my whole heart because it's who I am and I know if the tables were turned, I would be falling into their arms for help and those same people would be by my side with no questions asked; by events well beyond anyone's control, deaths both sudden and unexpected of some, and of those who were stolen from this life as I watched as disease ravaged their bodies until they drew their last breath. I'm just scratching the surface in these observations.

If 2017 was one of the most difficult years I've ever experienced, now that one-third of 2018 is in the rear view mirror, I realize I'm still not in plan making mode. I'm getting there but I've learned many wonderful lessons in all of this. I live in the moment and for the moment.

I moved into my new home a year ago. It's furnished with everything I need but until my financial situation is resolved, my hands are tied and decorating isn't in the cards. There are things I want to do in here, but they will wait. I will wait. And, I'm ok with that. I have the ocean, unobstructed from view, and I delight in glancing up from every room into which I walk to see the waves crashing on some days or barely lapping the shore on others. I realize the many moods of the ocean is a metaphor for my life. Calm and still, foggy and barely visible, choppy and uneven, or furiously pounding the shoreline, I know that whatever is happening on any given day, it is just for a short period of time. As my dad would so frequently say, "Life turns on a dime," and the ocean is a good reminder of exactly that.

I've experienced the joy of watching schools of dolphins dancing their way through the waves. The whales put on quite a show for an entire month just before the arrival of winter, which for the records, was brutal. They are back again for their last cruise off the southern most shores of Long Island before heading out to the deep waters east of here. Yesterday, in a most unexpected surprise as I was sitting on the terrace, one of them playfully jumped out of the water. Signs were up about a "resting seal" cautioning the need to stay within 150 feet. One morning when I was having my coffee, the seal who was being tracked by marine wildlife, was resting on the sand right in front of my terrace. It was a treat to watch as he occasionally lifted his head to see what was going on before settling back in to rest a bit more. It was even more of a treat to watch how gingerly the wildlife team coaxed him back into the water, after three plus hours. I take none of these moments for granted. I never know what I might experience on any given day: the great, the not so great, and the downright ugly.

So I just be. Expect nothing. Anticipate less. Settle into that space of acceptance. Fully embracing, quite simply: I am enough. Everything I have is enough. By refusing to allow the toxicity of others to steal that from me, difficult though it can be in some moments, by living in this place of authenticity and truth they are no longer just words, but the mantra by which I am choosing to live the life that I have carved for myself.

Yes, I am committed in so many ways to many projects that I find myself immersed in. They sustain me and fulfill me in ways that I can't even begin to describe. April, in its entirety, was consumed with conferences and meetings, preceded by pre-meeting planning, followed by post-meeting next step planning. Simultaneously exhausting and exhilarating, the wonder of reconnecting with people I've missed for many months, beyond social online channels, finally able to sit together at dinner tables, in meeting rooms, or on barstools rejuvenated my soul and every fiber of my being.

The SWOG meeting and the AACR Annual Meeting, in some ways, were difficult. Reminders of last year were everywhere I turned and more than once, I swallowed back a bucketload of tears. Surrounded by people who mean so much to me kept me distracted for nearly two weeks. Distracted from the reality of Lori's death and Jack's death - and the deaths of too many others - but they were my "go-to" people as I navigate unchartered and unfamiliar waters without their words of wisdom, encouragement, or at times, colorful indignation at the ongoing attempts being made to undermine me, to assassinate my character.

I can recall at least two days upon arriving home where I crashed. Hard. Snippets of memories from last year replayed in my head. Two days, I awoke with zero energy. After walking in circles for a short period of time after a restful night's sleep, I let it wash over me and beyond showering and brushing my teeth, those days were spent doing absolutely nothing. I had nothing to give, not to anyone or anything, so instead, I chose self-care. Thinking: Tomorrow, I'll feel better and today, I don't, and I am enough, I gave myself completely guiltless permission to feel those feelings, to be gentle with myself.

Cancer is traumatizing. I heard someone say in a recent discussion at one of the meetings, the word, in every language, is one that evokes the highest level of terror and fear. While supported by so many loved ones, the person who should have been by my side, the person who vowed to stand by my side in "sickness and in health" was only speaking words in that moment. When it came time to take action, those actions were to berate, to belittle, to betray telling far too many people, "Cancer changed her, she's not the same." Knowing today that some of these people were merely casual acquaintances, more than a few with whom he was intimate while still married and when I was on chemotherapy and having a host of surgeries performed, was a severe blow, one that struck me in the deepest core of my being.

Piece by piece I've managed to pick myself up. I'm still learning to deal with all of the collective trauma that I now understand is what is referred to as complex Post Traumatic Stress. Apparently, everything I have been doing is rooted in the concept of the opportunity for Post-Traumatic Growth. I'm still refining my path in this advocacy space and there are many exciting things happening. It seems in this moment, much of it is behind the scenes.

So many areas speak to me. We need to forge more meaningful partnerships between patients and scientists/medical providers. I am fortunate to have connected with many who realize the value of these partnerships. We need to address needs across the entire cancer continuum, from the moment of diagnosis and for the rest of our lives. Just because active treatment may be completed, there is fallout-both physical and emotional. I need not look beyond one simple step of separation, to my own mom, to attempt to understand the minefield that is life with metastatic disease. We must do better for all.

In this moment, I choose to acknowledge with such deep gratitude, two things. First, a big thank you to Healthline for acknowledging my writing efforts for the seventh consecutive year by including this blog on their list of Breast Cancer Blogs. Most importantly, I am ever so grateful to organizations like the NCI, SWOG, and the AACR for their steadfast leadership in advancing our knowledge in the area of cancer research to benefit patients and for allowing me to play a small role in their efforts. They, along with so many other individual researchers and a host of additional organizations work tirelessly to help in efforts to one day prevent at least some cancer types from ever occurring, to establish better treatment protocols for those of us diagnosed with cancer, to save the lives of those living with advanced and life-threatening cancer, and to improve the lives of every person living through and well-beyond cancer treatment.

For the record, May is National Cancer Research Month. While I am Awareness Weary, research does save lives and this is one initiative that is highly important. All of Us can play a role in whatever way speaks to us-even if that role is simply sitting beside someone offering silent and unwavering support for whatever they are experiencing in that moment.

While I had no idea where I was going when I sat down to write, and no idea how to end this particular post, I'll just offer words of encouragement to everyone. No matter what your space or place, Focus Forward. We can't undo the past, life offers no opportunity to redo things for which we may have regrets. But, life does allow us to learn and build upon our experiences and blaze our own trails.

I Am Enough. And So Are YOU.

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It's Just a Pain in the Neck, With a Side of PTS Terror

Once betrayed by our bodies like many of us feel after being diagnosed with cancer, every new ache can bring with it a level of fear. Some of us are better at dealing with that fear than others. I'm not in the better category.

Last April, I moved into my new home, my ocean oasis. That was the fourth move I'd made in 16 months. I guess I never learned those lessons about using one's legs to lift heavy things. Coupled with the fact that I'm on the petite side, measuring in at a mere 5 feet 2 inches, I really have no business doing heavy-lifting. Or dragging. Or pulling, pushing, shoving, forcing or whatever else constitutes physical heavy-lifting. Maybe I thought, because I am pretty decent at that emotional heavy-lifting, it somehow translated to the physical stuff, too.

Dumb move. Rookie mistake. Should have known better.

By early May, I was in serious pain. I couldn't pinpoint the pain. It was my clavicle, my back, my upper arm and it radiated right through my fingertips. It was severe. Like daggers shooting down my arm, I was convinced the breast cancer had taken up residence in my bone(s).

Turning like the pro that I am to every internet avenue, I began researching the possibility that lobular breast cancer might like spreading to the upper arm. None of this thinking was logical on any level, but it's what happens. It's what I do. Sadly, I think it's what many of us do.

The pain woke me at night. And if the pain didn't wake me, the moans would wake me instead. Sometimes, middle of the night moans and groans can be fun to wake to. A wild and vivid dream that I might try to coax into reality -- those are fun. What I was experiencing? Not one time was there a fabulous dream involved in any of this. It was just pain. And fear. Or more accurately, it was sheer, horrifying terror. Followed always by sleepless hours as my mind went down that path, you know, the it's back path, while my body was writhing in pain.

Only a handful of people knew what was going on and only one knew that the pain was excruciating. The suggestion that I must have this checked was met with two-word responses. "No way," "Not happening," or on those days when the pain got the best of me, it was a quick and loud, "Fuck That." I rationalized it. "Early detection of metastatic breast cancer has not been shown to change overall survival," I would proclaim, not even certain if this is still a clinically accurate statement. When I shared that thought with my one person, elaborating further that I'd prefer to have a bit more time of blissful ignorance rather than cross the line into metastatic disease, her two-word response was a surprise. "Fair enough."

I lived with the pain. I wasted my two emergency Percocet one night when the pain was unbearable. I finally convinced myself the heavy arm and what appeared to be a swollen right hand was lymphedema. I thought about calling the oncologist, but realized it was late on a Friday in advance of Memorial Day weekend. Instead, I called my mom who happened to have a monthly appointment with our oncologist. I let her hijack her own appointment on my behalf and within an hour, I was at in the office being evaluated. "Not lymphedema, not cording, probably a pinched nerve, here's the doctor you should see."

Once convinced it was not cancer that had spread to my bones, I made the appointment to see an orthopedic specialist. He had x-rays done while I was there, prescribed a medication that didn't work at all, and gave me the name of a physician in the office with whom I should follow up for pain management. Weeks later, awash in the calmness that my problem was not a cancerous spread, I was with the pain doctor. He manipulated my neck in every direction, prescribed a different medication, and discussed the need for an MRI.

And there it was. His voice began to sound like we were underwater. He was explaining that he doesn't give MRI results over the phone and absent a phone call, I should make no presumptions about the results of the MRI. I heard the word cancer and those dreaded words, "with your history..." and my brain was off to the races. I like this guy lots and in fairness, I'm sure he said he didn't think it was cancer but just hearing the word, for me, is like putting a war veteran back on a battlefield with the sound of explosives all around. I thanked him for letting me know he wouldn't be calling with results, recounting the number of people I've spoken with over the years who learned they had cancer via a phone call, including some who were behind the wheel of a car lucky they didn't cause a cataclysmic accident.

Already having stepped into the maze, I had to see this testing through. The insurance company approved the MRI immediately and I scheduled it, immediately. I needed answers and I needed them quickly. I had upped the ante by convincing myself it was "just lymphedema" as if that would be a walk in the park which, for the record, it isn't. Lymphedema can be, and often is quite debilitating.

I tried taking the gabapentin prescribed by the pain doctor but it was making me too groggy. I took precisely two pills. One in the afternoon, one in the evening and when I woke the following morning requiring four hours to get going, I tossed the bottle into a cabinet. The MRI was awful and it had nothing to do with being confined inside that tube. I kept my eyes closed despite my temptation to open them just once. Just once is all it takes for the claustrophobia to set in, but on this day, it was the pain. Lying still, flat on my back without any support for my neck caused the pain to be as severe as I'd ever experienced.

I dutifully returned for my follow-up. Little did the doctor know his plan of not giving results over the phone would be undermined by a patient portal. Score one for electronic medical records and automated processes. I saw the results days before my appointment. No Cancer! Armed with a report filled with all sorts of unfamiliar terminology, I was once again, trolling the internet for information, googling every word in the report. When I met with the doctor, his words were calming but he explained, quite emphatically, "Doing nothing isn't an option." He then asked about the gabapentin and I somewhat colorfully explained that I can't walk around like I'm stupid. He advised me to build up slowly with the pills and suggested a nerve block injection would be the best course of action. When he told me he did these injections without a sedative, I knew it was time to find a new doctor.

Stupid move.

I began taking the gabapentin and gradually built up to 5-6 capsules daily. Simultaneously, I began searching for a doctor who would just knock me out for this nerve block. The thought of someone sticking a needle in my neck? Not in a million years. For two months, I've been taking the gabapentin and today, I want to kick myself for letting this go on.

Last week, I went back to my guy. He did the nerve block. I was wide awake. I felt nothing. When I learned that I have to take every precaution to carefully and slowly taper off the gabapentin, I felt a whole lot. Aside from never, when did I blindly take any medication without doing my homework about possible side effects and the like? I've been off all prescribed medication for more than 8 months except for vitamin supplements and an anti-anxiety medication that I sometimes use if I have trouble sleeping. For ten years, I lived with a pill case. Cutting that cord was a cancer rite of passage.

And here I am, again. The weaning process, despite being on the medication for two short months, is going to be quite meticulous and quite lengthy. Tethered again to a pill bottle over my fear of an injection I didn't even feel?

Lesson learned. What lesson that was, I'm not really sure.

Must I learn to face fear squarely in the face? And if so, which fear - a cancer recurrence that pushed me to let this linger so long, or the terror of having a needle in my neck?

Or, reading before starting any new medication because some things are too dangerous to just stop taking?

Or, maybe it's acceptance that I'm not as young as my mind keeps telling me and its ok to ask for help rather than pretending “I got this,” in every single aspect of my life?

In the near term, the certain lesson is this process is going to be slow and steady. While slow and steady may win the race in fables and fairy tales, it's not really my style. For sure, the lesson upon which I would wager a substantial sum of money? Those aforementioned anti-anxiety meds? Until this chapter is wrapped up, they're not just for sleep disturbances anymore!

Note: I wrote this two months ago. I'm now fully weaned off the gabapentin and it knocked me on my ass for 48 hours each and every time I dropped one pill from my daily dose. I just had my follow up with the pain management doctor. I told him I still experience occasional numbness or tingling in the fingertips on my right hand. He told me I should be taking a low dose of gabapentin which was met with an icy stare and a quick, flip response, "Not happening, those pills are a bitch to stop." He told me he knew that which may have triggered another even icier glare in his direction followed by my question about other options. Apparently, we may be able to try another nerve block if the pain begins traveling down my shoulders, up my fingers and meeting somewhere around my elbow. However, it seems the optimal approach is the nerve block in conjunction with the gabapentin. Since that's not an option in my play book, it appears if this flares up again, I'm left with two lousy choices. Live with the pain or there will be yet another surgery in my future. As I can still feel that pain in my memory, I hope this remains in check or I'll be gowned up yet again, this time, having some form of surgery to figure out how to fix the three discs in my neck ... And so it goes ...

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Help us build @CancerBase - MBC patients - We need YOU!

I just put the information below on Facebook. CancerBase, by patients and for patients, wants to make sure it is built using the real world needs OF PATIENTS.

To best achieve this, the initial focus will be on the metastatic breast cancer community. We would like to speak directly with a small number patients. The purpose is not to identify specific information about anyone's individual disease. We are assessing needs. The calls will be private (in other words, it's not a group of patients - they will be one on one).

My interest in this project is deeply embedded in my heart and soul. You see, when this project was first launched at the initial Cancer Moonshot, six of us were "ready to light up the world." The team has since grown, exponentially.

Of those original six, four of us were patients.

I do this in memory of Sonja Durham (May), Lori Marx-Rubiner (August), and Jack Whelan (November). They were all stolen from us in a span of six months in 2017. I wish to carry their legacy forward and I hope you will consider sharing this with those who may be willing and able to help in this information gathering process.

With a grateful heart,

AnneMarie



 

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A New Year, A New Perspective

The next chapter begins. Or perhaps, it's the next book. Already, just 7 days into this year, I am surrounded by symbolism and I'm acutely aware of each of these things.

I spent New Year's Eve with a dear friend. We raised a glass at midnight, just the two of us, watching from the warmth of her home, as those in Times Square braved what I believe I heard was the second coldest ever. At 6:45AM, I was rushing into the car, the temperature a ridiculously frigid six degrees.

Six degrees of separation from the warm house to the warm car. And likely, six degrees or less of separation among those I already know and those I've yet to meet. Symbolic.

I arrived in Arizona mid-afternoon to begin my ESCAPE at Miraval. I highly recommend anyone in the advocacy space consider applying to this conference and I will write a proper post talking about what makes this conference so special when I can collect all of my thoughts.

Back in my Uber, as we approached Tucson from Phoenix, things began to look familiar. I realized we were on a road less traveled and it took us past a place where the entrance has a sign announcing "Miracles Happen Here" and I know, the other side of that sign says, "You Are a Miracle."

I know this because it was January 2, 2011 that I first walked through that facility. Here I was passing that sign on January 1, 2018. I grabbed my phone to double check the dates and then quickly used my fingers to count. If life indeed happens in cycles, that day was the end of a seven-year cycle. Symbolic.

Fittingly, my son's birthday was yesterday, and his age this year is a multiple of seven so he too is beginning the next seven-year cycle in his life. And he will be married later this year. An exciting time for him, for his beautiful bride to be who is one of the kindest and most considerate people I've ever met, and exciting for me.

Funny in a way, was realizing that the night of January 1, 2018 would be the night of a full, bright and beautiful supermoon. I saw it as I was walking back to my room after dinner and it was right in front of me the following morning, still high in the sky at 7AM.

Later that morning, I scheduled a Quantum Leap. I did this in 2015 at the same conference. I shared my experience in a series of photos in a blogpost. It was in a group session. This time, I did a private "leap" because it felt like the right way to conclude the year of turning inward. I would boldly step outward. There are only a couple of photos because the same young man who was holding the rope to lower me safely to the ground, had to leave the rope to take some pictures. It took me quite a bit of time to steady my legs before I could put my arms at my side.

When I stepped off the pole, unlike last time, there was no fear. And as Caleb, my guide shared, it's not really a leap, I was just going to take one step forward. In 2015, I did leap, somewhat frenzied and definitely terrified. I know I closed my eyes. This time, I looked right at Caleb and calmly stated that I was ready to step forward. I took a deep breath and a simple step toward the ground 35 feet below. He lowered me slowly and I savored every gentle sway until my feet touched the ground. This time, it was controlled and without any feeling of chaos. Symbolic.

I proved that I AM ready to face what is in front of me this time, rather than simply move forward because going backward is not an option. My lessons in Quantum Leaps One and Two were incremental, and they unfolded in the time frame that I am able to handle. And that's the lesson. I was somewhat unsteady in getting to the top this time, and I recall pausing on those top pegs. I realized my legs may not be strong enough to make that last step to the top. I also recall thinking, "If this is as far as I can get, then that's all I have to give today, and that is okay. I will still be fine and I will get back down safely with Caleb's hands guiding the rope." It was in that moment of acceptance, that moment of this is all I have right now and understanding that whatever I have in any given moment is ENOUGH, that I surrendered completely. It was, for me, the ability to surrender without thinking or harsh self-judgment that I found myself stepping up boldly and fearlessly.

Very symbolic.

After we were together on the ground, we spoke about the activity and tears came to my eyes as he mentioned something about the Catskills. I met Keith in a bungalow colony in the Catskill Mountains and I felt his presence. Caleb was referring to Mike Tyson, and wanted to share a quote I'd never heard. "Everyone has a plan until they get punched in the face." I look back at 2017 as a year where I'd been the recipient of more than I'd like to count sucker punches. I suppose learning the roll with those punches, as that saying goes, is yet another moment. Symbolic.

I was reminded of the sharp contrast from my home with its sweeping views of the ocean and the moist air to the peaceful backdrop of the Catalina mountains and the dry desert air when my sinuses decided to let me know they needed some hydration. I ignored this until my nose decided to shout a wake-up call at me. I was not sick, I felt fine, but an annoying running nose? A reminder to pay attention to what my body needs in any given moment: Stay present and check in with myself. Symbolic.

Having dodged the blizzard in New York, barely paying attention to any of it until I contacted the person who always transports me to and from the airport told me to call him when I knew for sure I'd be on a flight. He wasn't too sure I'd be getting home. The airports in the northeast were all jammed up from the cancellations. Yet, I did get home on schedule, without a single delay and this was with an uncharacteristic itinerary requiring connecting flights and checked bags. Generally, I avoid both. Smooth sailing, or should I say flying. Hopefully, this will be symbolic of what lies ahead.

When I returned last night it was still as frigid as it was when I left on January 1. I picked up a total of one degree in temperature. It was seven when I exited the terminal at JFK. I don't recall when it's been this cold for this long. I despise the cold and I'm beginning to assess my desire to stay in NY but it is home.

I'm thinking that as I approach some upcoming unpleasantness, or downright ugliness which I expect to begin unfolding in just days, I will use this icy weather to remind me there are times I, too will have to replace my blood with ice. I will maintain steely iciness when dealing with those who wish to see me punched in the face. I will stand tall. No one will rattle my nerves and I will be on the sunny side of this.

I can't control the punches, but I can stop the bleeding.

I can't control the weather but I can turn toward the sun to feel its warmth and allow its light to guide me.

And, I can't think of a better place to have spent the first week of this new year. The group of people I was with at the conference, some close friends who so very dear to me, and now, new friends, too helped me open my eyes fully and helped me realize throwing in the towel isn't even an option I can entertain on any level.

And so I move, #AlwaysForward. With a reminder, a gift I purchased right before I left. A chain to wear around my neck. The message attached to the chain says everything I need to remember.

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