Crossing the Bridge

By Martha Kaley, Founder, earlier.org

When our son was about 5 years old, he trotted down our drive to get the paper.  As he was running back up the hill, a neighbor’s dog started chasing him.  Fortunately, I was outside and intercepted the dog and chased him off.  However, after this experience, Mark began to be hesitant around dogs.  I have always been a very big dog lover and couldn’t bear the thought of my son being frightened of animals because I felt that he would miss a gift that animals bring to our lives.  After years of observing Mark’s continued and growing reticence with dogs, I decided that we needed to add a dog to our family.

The search for just the right dog took us to a farm where there was a litter of Chocolate Labs ready for adoption.  There was one sturdy little chocolate drop away from the others who was trying to drag a downed tree around.  I knew right then that we had found our guy: sturdy, persistent, stubborn and feisty.  Mark had already determined that since it was a male, his name would be Sherlock.  That is how our relationship – and our story – begins.

Sherlock lived up to his displayed characteristics of sturdy, persistent, and feisty.  And stubborn.  Very stubborn.  He spent years training me to provide him with treats and walk him upon demand.  He even trained me to wrestle with him every morning after our walk.  Our morning routine was set.  Then, one morning during our wrestling match, Sherlock scratched my chest.  It wasn’t much of a scratch, but the next morning I got up and realized that there was a straight line bruise from my clavicle to my breast.  I ran my fingers down it and felt a mass at the base of the bruise.  With my heart racing and a sudden feeling of nausea washing over me, I quickly attempted to regain my composure, assuring myself that there could not be a problem…I had just received a clear report from my mammogram just three months earlier.  Somehow, though, I just couldn’t shake that tiny bit of anxiety that continued to surface when my mind got quiet and I could not distract myself.  I started hearing the message, “Don’t play doctor, go see about it”.

In an effort to calm the voice in my head, I committed that I would see a doctor after my next monthly cycle if the mass was still there.   In the meantime, Sherlock and I were still wrestling and playing and doing all of the things that I had been trained to do.  Yet, still, I could not quiet that voice in my head.

I went ahead and met with my gynecologist.  He did a needle aspiration and assured me there was no cause for alarm, so I went back to the routine of my life…until 2 days later when I was coming in from a run and the phone was ringing.  It was my gynecologist with the results from the aspiration.  He said, “There was no fluid, but there are some atypical cells.”  Pause.  I said, “So what does that mean?”

His reply, “Well, they’re not benign and they’re not malignant, but with this in mind, I would like for you to see a surgeon.”

I hung up the phone and took a long pause.  It occurred to me that life was starting to move in a direction out of my control.  I diligently reminded myself, though, “Remember, you had a clear mammogram three months ago so I am sure everything will be fine…”  But I just couldn’t shake that sinking feeling.  I tried simple logic:  there is no breast cancer in my family.  I watch my weight.  I run almost every day.  I eat olive oil.  I do all the right things.  But it didn’t work…I felt sick with anxiety and uncertainty.

The next day, I met with the surgeon.  As I sat quietly in the waiting room, my hands were sweating and my heart was racing.    After the examination, he did not seem particularly concerned, but he suggested that since the cells were atypical, he would like to go ahead and remove the mass.  With this decided, certainly now, my life could start to get back on track.  We had planned a trip to Disney World for the next week and decided that we could go ahead with that.  We scheduled surgery for the Monday after we returned.  Jim and I did not even tell Mark or Sherlock because we knew there was no need for concern.

That Monday morning came and both Jim and I were confident that we would simply get this taken care of and move on.  We arrived at out-patient surgery; we knew that the surgery wouldn’t take very long.  Everything went as planned.  Or did it?  The mass that I had felt after that fateful wrestling match with Sherlock was removed and quickly determined to be benign.  Outstanding!  But, as the surgeon was closing up, he, in his own words that very day, “…just decided to take a look around.” And there it was:  the tiny group of horrible cells deviously hiding in my body, lying in wait to wreak havoc upon me, my family, my life, and my entire world.  For the rest of my life.  This barely 2 centimeter malignant mass, pressed against my chest wall was a demon living silently inside me…and my dog – my precious, energetic, stubborn Chocolate Lab –  aptly named Sherlock – found it.  Not medical science.  Not a $400,000 mammography machine.  Not a doctor with 12 years of education and decades more experience.  Just my dog.  It was the same density as breast tissue so it never would have been seen on imaging and it was so deep that it would never have been felt until it was…too late.  This was the vehicle that, with no warning, in that very nanosecond of life, catapulted me away, forever, from the very life I had known for 47 years.  That life was gone.

As I walked through this valley, having just crossed the permanent and forever bridge that forced me to leave my ‘old life’ behind, I gained insight for which I am very grateful…and at times, very sad.  After learning that most breast cancer is in the body five to eight years before it can even be imaged, and that is even with the best technology that is available today, my priorities shifted and my selection of choices changed.  Weighing on my heart and in my head was the realization that it was absolutely imperative to insure that a new and more comprehensive method to detect breast cancer was in process.

Sherlock couldn’t take care of all women, but he gave me the opportunity to take over his work.  With this opportunity came an obligation from which I could not turn away.  My choices were no longer just about my life and the lives of my immediate family.  Now, my choices were expanded to a global family.  I could no longer close myself off into my own familiar world.  My experience became the gift of a life forever changed.

After her diagnosis and treatment, Martha Kaley founded Earlier.org – Friends for an Earlier Breast Cancer Test – the only US non-profit exclusively dedicated to funding research seeing an earlier biological detection test for breast cancer.  Learn more at www.earlier.org.  

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What Inspires You To Keep Working Against Breast Cancer?

by Martha Kaley, Founder, earlier.org

I was asked this interesting question just recently. It was a thought provoking question which has a number of layers.

Believe me, I have asked myself this question often in my own mind, but never really taken the time to focus on the answer. However, after some soul searching here are some of my answers.

Of course, the first thing that I think of for me personally is my family. I want to live as long as I can to witness and enjoy all the events and days with my family. I want to watch, support, encourage, love and enjoy our granddaughters as they grow and develop each year. I want to wrap our arms and hearts around our son, his wife and the girls so they know how loved they are and how much we adore them and cheer for them. And, I want my husband and I to have many more healthy years to enjoy each day together and to continue making memories.

Beyond my own personal wishes, I am privileged to see and hear the love that exists among friends who are concerned about other friends, so not only do I see the family component, but also how friends are involved with each other. We humans are an interesting group of critters. We have so many dimensions. We can be so mean and then we can be so kind. We can react so quickly to a crisis and then fall so flat when the immediacy fades. When I was going through my experience with breast cancer, the outpouring of support was remarkable. Neighbors and acquaintances as well as family demonstrated such kindness and so much beautiful concern. Friendship and concern is what I was so honored to see. It gives one the opportunity to really see the beautiful part of humanity.

Because of our work, I have been put in a position to hear many life stories, each of which is different and each of which pulls on a different emotion. I must often retreat from where I am because I am so affected by each one and I can only bear some of the stories for so long. Many of the life stories that send me up the wall involve young women and young mothers. By being somewhat pigeon holed thinking that breast cancer primarily affects an age group of older women, the statistics of breast cancer seem to minimize the fact that young women also are susceptible to breast cancer. The question arises: do we only judge the impact of breast cancer by numbers? For me, there is NO statistic that is acceptable for breast cancer, least of all for young women or young mothers being made to endure the heartbreak, terror, and gut grabbing sadness that is felt when she learns that she has breast cancer and she has two young children, ages 7 months and 3 years old whose lives will be impacted by their mother’s illness. Unless the number here is 0, OR unless a biological test is identified that will detect breast cancer so early that it is intercepted before the fear of metastasis has arisen, then we still have work to do. Statistics and general numbers mean nothing to a 21 year old with her life in front of her who wonders if she will make it to her 30th birthday, and then she doesn’t. Statistics mean nothing if you are the one person with 6 children who has dealt with breast cancer 3 times in your young life. There are experiences, one after another, that can be shared. I could continue to elaborate with an experience of a young mom with two young boys who was doing laundry and while reaching into the dryer felt a lump. It was breast cancer. She survived for four years. Fortunately, not all stories end badly. I am delighted when there is a wonderful outcome from a breast cancer diagnosis and there are many of those. I am, however, saying that if there is only one poor outcome and you happen to be that one, then the statistic is 100%. These are the stories of lives that remain in my mind during the night when I am wondering what can I say or do to share with you why it has been and continues to be so important that you help make this change.

With that in mind, what keeps me working is the realization of the wonderful research which could lead to an earlier detection test for breast cancer, and the work that needs our support. Earlier.org has funded ninety (90) grants totaling nearly $3.5 million. Many of those grants have been able to obtain further, larger funding to continue and expand the work. Without the seed grants that we provide, many of these grants just would not proceed.

This year, we requested and received feedback from a number of the researchers who were awarded a grant. Even though these grants are small in the big picture of biological funding, they have a big impact. Perhaps you can get a sense of exactly how consequential your donations and support of this organization are through the following comments:

“On behalf of my research team, I would like to thank you most sincerely for sponsoring our research titled Non-invasive early detection of breast cancer: developing bi-specific APPI peptides and small molecule conjugates that bind to both αvβ3 integrin and MT1-MMP. Your support will open many new scientific opportunities for my research group on the way to accomplishing our main goal, which is to promote the development of the next generation of breast cancer therapeutics, including molecular imaging agents and targeted drug delivery agents. Specifically, your contribution will enable us to develop new, multifunctional proteins with a wide variety of biomedical applications for breast cancer, ranging from imaging to therapy.

Since the main goal of this research is to translate our findings into clinical, and subsequently advanced, medical treatment, we envision that it will significantly improve breast cancer patient outcomes. Your generous contribution will help make our vision a reality.

As you are no doubt well aware, high-quality research of the type proposed by me involves considerable expense. Your sponsorship will specifically provide for hiring the professional researchers and purchasing the instruments, reagents and supplies required. Your contribution is not only a generous grant but is also an ‘advertising’ opportunity that will promote our breast cancer research.

Without the support of people like you, we will not be able to reach our goals. Thank you once again for your generous support of my team and research. It is truly appreciated.

We promise to keep you updated of our progress.” — Niv Papo, Ph.D., Assistant Professor, Avram and Stella Goldstein-Goren Department of Biotechnology Engineering, Ben-Gurion University of the Negev

“What a heart-warming email. It is because of people like you we feel obligated to continue our daily pursue, often monotonous research, if only to extend lives of patients and improve their quality of life. The daily routines we follow painstakingly seeking a hint of positive information within the vast amount of genetic data we generate is often missed by others. The fact that earlier.org supports our work facilitates our studies and increases our chances in locating biomarkers for early detection of breast cancer. I look forward to updating you on our advancement.” –Noam Shomron, Ph.D., Tel Aviv University

“I am truly honored to be the recipient of this year’s ‘Collegiate Women Philanthropists’ Grant from your foundation. I am very grateful for having the opportunities to work on the proposed imaging project for early detection of breast cancer. My special thanks go to the two very special groups of young women in North Carolina, who have dedicated their annual philanthropy work toward foundation — the proposed research would be impossible without the compassionate efforts and hard works of the two groups. I also want to take this opportunity to assure you that we will work diligently in accomplishing the goals of the proposed project. With the generous support from the foundation, we are confident that we will make significant progress in developing novel imaging technique for breast cancer imaging and contribute to the eradication of beast cancer.” – Lei Xing, Ph.D., DABR, Jacob Haimson Professor & Director of Radiation Physics Division, Department of Radiation Oncology, Stanford University

“I am humbled and honored to receive a grant this year in the name of Neil (Maddux Miller). We are very excited about our current projects and will now have the necessary funds to take this combine Molecular breast imaging/ultrasound scanner to the next stage. I just returned from a research advisory board meeting…where we had invited breast imaging experts from all over to hear about our research. They were impressed and gave us some important advice on how best to launch this technology at centers beyond Mayo (Clinic).” – Carrie B. Hruska, Ph.D., Assistant Professor of Radiologic Physics at Mayo Clinic

Each of you are an inspiration to me. If I can interest anyone in the effort of changing the picture of breast cancer, then I feel that I am serving a purpose. Everyone who recognizes the opportunity to improve the outcome of a breast cancer diagnosis through improving science is an inspiration for me. And even greater, when someone chooses to donate or participate in the project then I feel rewarded. This CAN be achieved. It is not a long-range dream. It is a pending reality.

I am humbled and grateful to each of you who are helping Earlier.org to provide the researchers the opportunity to identify new methods for earlier detection of breast cancer. Science is poised to bring this to fruition, yet science needs the help of all of us. Earlier.org is the nation’s only non-profit organization focused solely on this one mission of identifying an earlier detection test for breast cancer. Our vision is a biological test that would demonstrate a marker to alert the medical community of the presence of breast cancer, ideally before a tumor has even formed but certainly before the concern of metastasis has ever entered the picture. The comment that I often hear is “Aren’t they doing something about this?” My response must be “Who is they?” The reality is “they” must be US!

Thank you to all of you who tirelessly follow with interest this scientific process. I understand the feeling of, “Haven’t we done this yet?” The answer is not quite, but we are getting closer in exponential increments now. So, “keep your eye on the prize”. It is just not time to pause yet.

I am only one person, definitely not an expert, and only know what I see, experience, and feel from my own perspective. So, I would like to ask YOU, what keeps YOU working against breast cancer or what inspires you to be interested in the subject? I would love to hear from you so that your voice will be heard. Please share your story with us here. This venue might be just the place to tell your story.

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Pass It On

by Martha Kaley, Founder, earlier.org

Never before has a generation had such an opportunity to effect a change in science as exists today. We are able to observe and experience the beginning of a renaissance in science. It is not so necessary to understand the parts of this experience, as it is valuable to grasp the powerful potential that these discoveries unveil.

It seems that the Human Genome Project was a significant launching point for remarkable progress. According to Wikipedia, “The Human Genome Project is an international scientific research project with a primary goal of determining the sequence of chemical base pairs which make up DNA, and of identifying and mapping the approximately 20,000-25,000 genes of the human genome from both a physical and functional standpoint.

A working draft of the genome was announced in 2000 and a complete one in 2003, with further, more detailed analysis still being published…

Researchers continue to identify protein-coding genes and their functions; the objective is to find disease-causing genes and possibly use the information to develop more specific treatments.”

There are several notable insights in this information. First, it is an international scientific research project. That is important because it means there is collaborative work taking place, which as we have seen, is now critical for progress. The second point is that “a working draft of the genome was announced in 2000.” In scientific discovery, the time from 2000 to 2013 is like a blink in time. Since this discovery, it seems that information has expanded and continues to expand exponentially. The third point is that “more detailed analysis is still being published.” This indicates that work is continuing and being refined by more information. Further information in the discussion in Wikipedia explains the applications and proposed benefits, giving a small peek into possibilities developing as a result of this work.

Again, there is no need for all of us to understand the science, it is just important to realize the opportunities.

Two additional developments are Nanotechnology and Epigenetics.

According to www.UnderstandingNano.com, nanotechnology is “the manipulation of matter on an atomic and molecular scale.” The National Nanotechnology Initiative defines nanotechnology as “the manipulation of matter with at least one dimension sized from 1 to 100 nanometer. This definition reflects the fact that quantum mechanical effects are important at this quantum-realm scale, and so the definition shifted from a particular technological goal to a research category inclusive of all types of research and technologies that deal with the special properties of matter that occur below the given size threshold.” Translation here is that science is now working in an entirely different realm than previously possible, therefore opening new approaches to discovery. Entirely new ways of thinking and discovery have evolved.

Finally, for right now, we can consider the science of epigenetics. What is epigenetics? According to Learn Genetics, University of Utah, epigenetics is “the development and maintenance of an organism by a set of chemical reactions that switch parts of the genome off and on at strategic times and locations. Epigenetics is the study of these reactions and the factors that influence them.”

In a very elementary concept, it seems that the bottom line here is that science is now able to address chemical reactions of the body and to be able to understand these reactions and the impact that they might have.

As laypeople, it is important to be aware of developments, opportunities and the exciting time in which we live. For earlier.org, these developments in science bring additional importance to the mission of supporting research focused solely on identifying a better method for earlier detection of breast cancer, ideally a biological test, because it is increasingly closer to being achievable. Identifying a biological test to detect the presence of breast cancer is only one part of a large issue, but it is a critical part. If we do not know that breast cancer is present, then how can we treat it and when would we choose to treat it?

I didn’t want breast cancer any less than the next person. Yet, that was not a choice. The only real choice within our reach is being offered the opportunity to detect the presence of breast cancer in our bodies earlier and more accurately. That is the opportunity that earlier.org is working to create through scientific research. As scientific capabilities expand, our opportunities expand to at least realize that we are under attack by breast cancer. Considering the expansiveness of the disease and the impact on so many lives, it makes one wonder when the tipping point will be reached and when we might join excitedly together participating at whatever level we can to change the picture of breast cancer by identifying the existing presence of the disease at a far earlier time than is now possible.

This is an important time in science — one that must not be missed. Will you choose to be a part?

The time is now. The opportunity is here. The choice is ours.

Read, think, act and pass it on. Donate to earlier.org.

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Did You Lock the Front Door?

by Martha Kaley, Founder, earlier.org

When you leave your residence, do you ever wonder if you forgot to do something to keep it safe and secure, or do you just assume that everything will be OK even if you didn’t take the final steps to complete the departure process? Do you feel mostly OK that nothing will happen, or do you go back, just to check…did I lock the door, did I take the keys, did I set the security system?

With breast cancer, we are leaving home with the front door unlocked. In unspoken wisdom, we have a sense deep down that we actually have a faulty lock anyway, and it isn’t very good at securing the residence, but are choosing to just assume and hope that everything will be OK.

It is remarkable to me (and do you realize?) that we are willing to throw over 200,000 women under the bus each year as they are diagnosed with breast cancer and…moreover, over 1 million women are walking around with breast cancer right now and they don’t even know it…and we have minimal technology available for the medical community to use in order to even begin to take action for these in the ‘early stages’ of the disease. Not knowing simply can not be the option of choice to make this disease go away. Not identifying the presence of breast cancer merely delays the opportunity to intercept it until it is elevated to potentially life-threatening status. Yet, society as a whole, seems to settle for this status.

The February 2013 issue of the Journal of the American Medical Association published a research study that confirms what clinicians have been seeing and mentioning anecdotally for years; according to this study, “The number of American women ages 25 to 39 diagnosed with metastatic breast cancer—which has already spread to other organs by the time it’s found—rose about 3.6% a year from 2000 to 2009”.

I would have expected an enormous response to this information at least from all of the media, let alone the medical community. There was not. It seems that the alarm bell has still not sounded.

When do we stop playing the odds that when and if breast cancer is diagnosed, it will be in women 50 years old or older? If you are being very honest with yourself, it is clear that this belief gives the perception that these women are expendable. So, many questions come to mind: When do we become startled and stunned that breast cancer is occurring in more young women and choose to take action? When do we stop stomping out fires with existing breast cancer therapy and hope that we’ve got it, rather than digging fire lines to intercept it and cut it off? Where is the tipping point? How many 25 to 39 year olds’ lives must be altered and terrorized before we send up the alarm and actually take steps to change the picture of this disease through earlier detection? When do we shift the focus from feeling sad and sorry and worried about someone being diagnosed and what their outcome is going to be, to being proactive to intercept the disease so we can move more rapidly in treatment to minimize the damage that breast cancer inflicts? When do we decide that enough is enough and we change the faulty lock on the door instead of just taking our chances?

If the tipping point has not hit you yet with this new information, then who has to be put in harm’s way to get your attention? When do you accept the reality that awareness means nothing without action? We just cannot allow ourselves to settle for chances.  Science is poised with potential to change this disease. Yet, we are still accepting the plodding along approach. How many young families being thrown into a life altering situation will it take before we elevate ourselves to action? Which young family must fall to this? Would you react to the call to arms if the family that was affected was your son’s, your daughter’s, or your own? If this were your child, what do you think your response would be?

In the situation that we are in today, are we not just playing the odds? Are you willing to walk away without locking the front door? Learn more about earlier.org.

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Breast Cancer…Through the Eyes of a 6 Year-Old

Breast Cancer….Through the eyes of my 6 year-old granddaughter, Laney

Learn more at http://www.earlier.org

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March 31, 2013 · 7:06 pm

The Best Bargain Ever!

by Martha Kaley, founder of earlier.org

Most of us try to be wise spenders. We carefully evaluate the cost effectiveness of any money that we choose to spend. Let me tell you about the best bargain EVER that we have available to us! It is called biomedical research, specifically, research investigating a biological test to detect breast cancer earlier. Picture the end results of focused and directed research which leads to the identification of a biological marker for detecting breast cancer efficiently, effectively, and dependably 5-8 years before it can now be detected. Picture how this would actually change the impact of breast cancer on all of us. What if we, each of us joining together, could make available a standard, routine test which would identify the presence of breast cancer so early that metastasis would be intercepted before it has a chance to happen? Now, folks, THAT is what I call a remarkable bargain! You don’t even have to do it yourself. You can put the responsibility in the hands of the most qualified people – truly gifted researchers – who can take this job and return significant results. Again, what a bargain.

Dr. John D’Orazio, practicing pediatric oncologist and physician scientist at the University of Kentucky College of Medicine, writes that “dwindling federal funds are threatening research, lives.” Published December 2, 2012 in the Lexington (KY) Herald-Leader, you can  read the full article here.

Secure our future against breast cancer with a donation to earlier.org, the best bargain ever!

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The Dilemma: Weight Gain and Breast Cancer Recurrence

A new study released August 27, 2012 in the journal, Cancer, reports that researchers have identified that being even moderately overweight is linked to a higher risk of breast cancer recurrence. Learn more about the study here.

“This study found that despite optimal treatment, including chemotherapy and hormonal therapy, the increased body mass index—which usually corresponds to the body’s fat content—significantly increased women’s risk of cancer recurrence and death.”

“In the new study, the type of breast cancer that was increased was hormone receptor-positive, the most common type of breast cancer that accounts for two-thirds of all breast cancer cases in the United States and worldwide.“

According to Dr. Jay Brooks, oncologist at Ochsner Clinic Foundation and Hospital in Baton Rouge, La., “I tell my patient that next to taking [chemotherapy] treatments, the simple most important thing they can do is lose weight.”

This is all good, but now there is even more of a “Catch-22″ for a woman with estrogen receptor positive breast cancer. One of the major treatments for these cases is using Tamoxifen for five years. According to MedicineNet.com, “Tamoxifen is an anti-estrogen that prevents the effect of estrogens on tissues. Side effects: The most common side effects associated of Tamoxifen are hot flashes, weight gain, abnormal or absence of menstrual periods, etc.”  Did you notice that the second listed side effect is weight gain? So now, women are prescribed medication that has the potential side effect of weight gain and they are told that the single most important thing they can do is lose weight. What kind of dilemma does this pose for a woman?

I am not refuting the research results. I am just pondering what impact this might have for women. I know that at one time it was necessary for me to take medication, which, among other things had the potential to cause weight gain.  Six months, 30 pounds and lots of frustration later, I was able to stop taking the medication and was able to lose weight. I worry that women are going to be blamed for gaining or not losing weight when perhaps they have less than full fighting capacity. It could be that their bodies are put in a position to resist losing weight. I am all for being careful and cognizant about eating healthy and exercising. However, I am concerned that we might skim over this particularly confounding issue. I do not have the answers, but I do think that we need to contemplate the question.

Let me know your thoughts surrounding this dilemma. I appreciate your comments.

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