Breast Cancer Awareness Month — Developing a Plan to Manage the Reality of Metastatic Breast Cancer

News | Kathleen McEvoy| October 07, 2019

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Breast Cancer Awareness Month is an opportunity to celebrate being a survivor, but what do you do when living with breast cancer is your only option?

In October 2016, EBSCO’s Vice President of Communications, Kathleen McEvoy, wrote a blog post, Why Breast Cancer Awareness Month is About More Than the Color Pink. For Breast Cancer Awareness Month 2019, she shares her new awareness of Metastatic Breast Cancer.

In October 2011, I began my treatment for Stage Two, HER2 Positive, Hormone Receptor Positive Breast Cancer. After 18 months, I finished my treatment and was cured. Well, I had an 85 percent chance of being cured and in February 2018, I discovered what it meant to fall into that 15 percent. Having my cancer reoccur and metastasize to my liver and bones brought reality to my door even more harshly than it had arrived in 2011. At this point, there is no cure. The goal of my current treatment is to stave off recurrence for as long as possible and for me to figure out what life as a 15 percenter means — how to live with cancer.

Some things are remarkably the same. My care team at Dana-Farber Cancer Institute in Boston, Massachusetts, is the same — from my Oncology Nurse to my Oncologist and Nurse Practitioner. That level of consistency is reassuring in a clinical care team. They have seen and heard it all, they know me, they are honest with me and I feel cared for and informed. They are also very patient with this particular patient who travels a lot. No treatment can’t be rearranged so I can visit my children who both live far away or continue to work and attend the EBSCO User Group, Charleston Conference, ALA or ER&L. There is consistency and support at EBSCO as well; my boss, his boss and his boss are the same people who went through this with me in 2011 and their level of support has not waivered.

A few things I wrote in my original blog post still resonate. One reads:

“I have long thought that it is the little things in life — the routines and the schedules — that sustain us. I call it a “glimpse of gravity,” when you can clearly see the things that hold you up.”

For me, family, work and the normal routines of life are that “glimpse of gravity.” These small, daily activities, rituals and goals are the things that keep you moving forward. 

While I spoke in detail about what I had to go through during my original treatment, it all seems quaint given the rigors of getting through 25 (of 26) weeks of chemotherapy. A new medication that had been added to the protocol since 2013 (while a great indication of how research in this area is constantly changing) proved challenging. The cumulative effects of nearly six-months of treatment meant the last week of August was quite a week including a lengthy hospital stay, lots of tests and procedures and a rather dramatic crash out of chemotherapy as my body just simply said, no more.

A few weeks later came another unsettling surprise as I found out I needed to have brain radiation because my cancer had metastasized there. For a communicator, that was a fresh fear and one I did not take lightly. The radiation treatment was another dramatic story involving not having enough anti-anxiety medication to battle the claustrophobia that comes with the custom mask you need to wear so the technicians can ratchet your head to a table — it sounds as pleasant as it is. But after popping back out to the waiting room to get more meds and teaching the entire radiation crew at Brigham and Women’s Hospital about the joy that is Michael McDonald Radio, it was over soon enough — there were no lasting effects and regular MRIs have shown no additional metastases.

I now move forward thinking, what can I do in the next 12 weeks to improve my life and the life of my family, friends and colleagues, so that if, or unfortunately when, the day comes when those MRIs and Cat Scans return bad news, I will know that I have accomplished what I wanted to and can feel good about what I am leaving behind.

In October of last year, I started on a clinical trial designed to see if a medication that is currently in use for another type of breast cancer would work on me and push back recurrence. This is where I stand today. In addition to my regular treatment (which is infusion, but not chemotherapy, every three weeks), I take the trial medication in three-week cycles and undergo MRIs and Cat Scans every 12 weeks to determine whether my cancer remains at bay. So far, so good.

Working at EBSCO, where technology is central to the delivery of our resources, I have become accustomed to terms like; SAFe, Lean Management, Agile and Sprints — as continuous development has become the EBSCO standard. With my new medical reality in tow, I started thinking how these same themes could apply to my current diagnostic trajectory. How do I continuously develop? How do I “Live Lean?” Two elements of the Agile Manifesto that resonate with me are: prizing individuals and interactions rather than processes and responding to change rather than following a plan. The notion of “sprints” took on new meaning as I began to think of the arbitrary periods of time that would start to dominate my life. 

I now see my life play out in what I call 12-week sprints — the 12-week periods between knowing and wondering — knowing I am okay and wondering whether I’m still alright. I now move forward thinking, what can I do in the next 12 weeks to improve my life and the life of my family, friends and colleagues, so that if, or unfortunately when, the day comes when those MRIs and Cat Scans return bad news, I will know that I have accomplished what I wanted to and can feel good about what I am leaving behind.

I try not to get locked into long-range planning but rather focus on the small things and easy adjustments. It has really become an effective way to look at things and to stave off the “scanxiety” inherent in living your life in between MRIs and Cat Scans. My goals revolve around always moving forward, improving and developing, fixing what is broken, learning new ways of defining the future and enriching the lives of the people around me.

Twelve weeks seems arbitrary enough, it’s just three months, one business quarter; but what if four times a year we sat back, reprioritized and moved forward with redefined plans? What if we put people first? Think of what we could develop and who we could impact if continuous improvement and continuous development were added to our own to-do lists. Think of how much better off we’d all be if we knew our long term goals and focused on the short term gains to get us there.

In 2016, I wrote:

“My friend’s mother Cookie died in 1996 of complications from breast cancer. Shortly before she died she declared, ‘Knowledge is the only thing you take with you.’”

That statement, “knowledge is the only thing you take with you,” has stayed with me for more than 20 years. I like acquiring knowledge whether through reading, writing, observing or interacting with people so it is no surprise that I would find comfort in Cookie’s observation. In business, we give ourselves certain deadlines to get things done because we know we are always moving forward and have goals to meet and customer needs to fulfill. What if we gave ourselves similar deadlines around our goals? Twelve weeks is my arbitrary timeline. Not all of us will have a deadly disease driving us, but we all have something, why not use it to create something good, more awareness, a better you. Good luck.

 

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Kathleen McEvoy
Vice President of Communications, EBSCO

Kathleen McEvoy is the Vice President of Communications at EBSCO Information Services. Kathleen has worked at EBSCO Information Services for 14 years after a career as a broadcast journalist. Kathleen is the Board Secretary of ALA’s United for Libraries Division.

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