It’s not a sprint…it’s a marathon!

Like many others I was drawn to advocacy because I wanted to change the future for others facing aggressive breast cancer. I felt a sense of urgency to educate, push for research and reduce deaths from breast cancer. Naively, I believed a cure was within reach if we could just fund enough research.

It takes time to learn the research landscape and how things operate. Attending conferences, learning more about the science of breast cancer, and getting to know others in the advocacy community aided my understanding. Gaining credibility in that community also takes time. Making sure to learn the medical/research lingo and the key people working in my area of interest were also important.

Sadly, I quickly learned that even though I had some medical credentials, RN and BSN, many oncology researchers and physicians would much rather engage in conversation with our founder (a businessman) than me. He’d lost his wife to inflammatory breast cancer (IBC) and was committed to facilitating research to end the disease. We shared that passion, but as a patient, I also wanted people to learn the symptoms of IBC so they could advocate for themselves when needed getting a more timely diagnosis and appropriate treatment.

We learned, early on, that the medical research community tends P1000564to be risk averse and  move slowly. They operate on the ‘publish or perish’ model. Advocates, who are losing friends, feel a sense of urgency that is at odds with that snail’s pace of advancement. How to work in that space effectively can be quite challenging. As advocates we want to see change NOW but don’t want to alienate the very people who can make that happen! It’s a delicate balance to know how and when to push and when to step back and regroup. I also realize there are plenty of researchers who share our frustration of the current system.

I’ve heard authorities on child rearing stress the importance of “picking your battles”. The same could be said in advocacy. You have to decide what things you want to accomplish and then be willing to keep working at those things until you accomplish them. Of course my personal list has changed a bit with time and our organization’s priorities are reviewed regularly as well. Science is fluid and areas of interest in research change.

Bringing a high quality, CME (continuing medical education) program on IBC to the medical/research community has been a high priority for me and our organization. With no paid staff and a limited budget we just couldn’t accomplish this task but it remained high on our list and something I was committed to, personally. I knew that to reach the medical community with quality information it had to come from a source they trust, other doctors.

An important part of advocacy is networking with others and learning from them. It’s easy to over-commit but it’s also useful to work with a lot of different people to accomplish things. As a result I usually learn something, can share about IBC with a new group, and broaden my network of friends/colleagues. Becoming a member of the NAPBC (National Accreditation Program for Breast Centers) Advocacy Committee was one of those opportunities. I wasn’t very familiar with the accreditation process and wondered if IBC education was included. Each year, when we discussed priorities for the committee, I suggested IBC education as well as metastatic breast cancer. Each year there were other topics that took priority…until last year! Over the last year we’ve been working with the Education and Standards committees on how to approach these important topics. 2019-07-25_125900On September 12, 2019, the NAPBC offered a CME program, by webinar, “Best Practices in the Diagnosis and Treatment of Inflammatory Breast Cancer”!! I was able to help secure Dr. Beth Overmoyer, Director of the Dana Farber Cancer Institute’s IBC Clinic to present the program. We were excited when about 700 registered for the program and well over 600 participated in the live webinar!! As I sat at my computer watching the numbers go up and up, as people signed in, no one could see the big smile on my face. They might have heard the delight in my voice as I had the honor of introducing and welcoming my friend and colleague Dr. Overmoyer, and that’s fine. (click on the highlighted webinar name above to access the archived program)

It’s a hard lesson but I’ve learned effective advocacy isn’t a sprint, it’s a marathon. Yes, there are times when everything aligns and a ‘win’ comes about more quickly. However, most often it takes that marathon of determination to reach the goal. It’s frustrating and exhausting and why so many people call it quits.

In a previous blog I talked about the value of collaboration, ‘Plays well with others’. In another you learned someone described my advocacy style as “kick butt and take names”! Today’s lesson is about staying the course and looking for a way to complete the marathon….it feels good and energizes you to keep at it!female-marathon-runner-clipart-14

 

Rule #1: Play well with others

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I’m an only child. That’s right, no brothers or sisters, just me. I think my mother might have liked additional children and at one point in time, I thought that would be fun, but that wasn’t to be. Gradually, I decided it was OK being an ‘only’. I spent much of my childhood around adults or off by myself reading, drawing or engrossed in my Barbies. However, my mother wanted to be sure I learned to share and play well with others. While some learn that lesson in kindergarten, there was no kindergarten where I grew up, so I had to learn that lesson other places. I also heard “if you can’t say something nice, don’t say anything at all”. I try to follow that rule but I’m not always successful.

Learning to play well with others is an important skill. We assume people learn that in kindergarten or before but apparently some skipped that lesson. Over the years I’ve worked in lots of different jobs. I was the cook in a daycare center, a secretary, night nurse in a nursing home, labor & delivery nurse, hospice care, etc….. Most of those jobs involved working with a number of other people and finding ways to get along with those coworkers certainly made the job more pleasant.

When I entered the non-profit world I assumed that everyone was in it for the same reasons I was…..to help others, for the greater good. Admittedly I knew next to nothing about running a non-profit and there’s not really a job description for a patient advocate! IMG_0292In 1999, when the Inflammatory Breast Cancer (IBC) Research Foundation was started, we were “building the airplane while flying it”! We did all the necessary legal work, filed with IRS for 501 c 3 non-profit status, set up a toll-free phone line and then a website. I guess we assumed if we built it, people would come. At that time no one else was speaking out about the unique needs of the IBC community, pushing for research, or providing IBC education. IBC survival was still quite dismal then and we wanted to change that. We were passionate and dedicated but pretty naïve.

Deciding to be a web-based non-profit was a new idea in 1999. Why spend money on a office when the people you serve don’t live in one geographic area? Choosing to operate independently rather than under the umbrella of a medical institution was also atypical. We felt it was important to remain neutral, allowing Inflammatory Breast Cancer Research Foundation (IBCRF) to work with a variety of partners and even bring competitors to our table to work together.

Collaboration…back to that play well with others theme. We learned very quickly that as a small organization we could accomplish more if we formed partnerships. The Young Survival Coalition (YSC) was one of our first collaborations. Having formed not long before IBCRF, YSC shared a similar patient demographic. We did a lot of brainstorming in those early years and continue to have a good working relationship.

The first official industry collaboration came when GlaxoSmithKline (GSK) decided to do an IBC specific clinical trial for lapatinib (Tykerb). Having advocate involvement from the start brought an important patient voice. We developed relationships with many U.S. and international oncology professionals through that trial and continue to work with them, connecting at conferences and working with their patients as needed.

The Metastatic Breast Cancer Alliance is an example of an amazing collaboration. With 2/3 of the IBC population facing metastatic disease at one time or another, it’s important that we find a way to amplify the metastatic breast cancer voice, while also meeting the needs of our stage III constituency. Joining with other breast MBCA2014cancer non-profits, individual metastatic patients and industry partners allows small organizations, like ours, to have more impact as well as meet the needs of our own patients more effectively. MBC Alliance membership isn’t dependent on size or ability to provide funds, it’s dependent on the organization’s commitment and willingness to do the work.

In 20 years we’ve had lots of opportunities to play well with others. You can relax, I don’t plan to list them all! However, soon I’ll be sharing some big news regarding a 4 year collaboration that is reaping incredible results to benefit those with IBC! Of course there are times when a collaboration just doesn’t work. Then we try to figure out if we could have done anything to change the outcome, hoping to gain insight from the experience. We’ve also learned that not everyone plays well with others, and move on.

During the recent ASCO (American Society of Clinical Oncology) Annual Meeting I had a few minutes to sit down with two newer advocates. They are figuring out where to focus their efforts for best results. They’d asked if I might mentor them and share from 20 yr of experience. As they recounted their frustration during a recent advocacy effort I reminded them of the importance of playing well with others. It’s such an important rule in advocacy work as well as daily life. Along with that, is learning not to take things personally. Keep in mind what you want to accomplish and how you can facilitate that, and try not to get in your own way. The rule applies to individual advocates and to advocacy organizations.

For twenty years I’ve been inventing my “job” as a patient advocate each day! Of course there were quite a few years when I was also working in a nursing job with the advocacy work on the side. Even then, no way could I write down what I did into a job description, it changed constantly! I was less involved in administration then but that gradually changed as I took on more responsibility and left my nursing job.

men-s-plays-well-with-others-t-shirt-palmercash-2No two days are the same, but that’s also the benefit and joy of patient advocacy. When we see a need, we do what we can to help. It takes dedication, passion, caring for others and learning to make do the best you can to make a difference. We do all that on a shoestring as well!

In my last blog post I shared how some young research colleagues at IU Simon Cancer Center said they’d describe me (and my advocacy style) as “Kick Butt and Take Names”. I suppose now I should also add to that “Plays Well with Others”!

Milestones and Memories: aka Kick Butt & Take Names!

2019 is a year of milestones. March 18 was 25 years since my diagnosis of inflammatory breast cancer! At that time I never dreamed I’d live more than a year or two, at best. I was 41, grandmother to a 3 month old baby girl and anxious to see my daughter, and only child, graduate from high school. It was an emotionally packed time, to say the least. Now, 25 years later, I look back and marvel that we made it through those scary days and I’ve lived to see that baby girl grow up, marry and have two little girls of her own! How amazing is that?!?

My granddaughter helped me face difficult days

This year the Inflammatory Breast Cancer Research Foundation will mark 20 years since its start! Milestone number two. Had that first event, my diagnosis, not happened I still might not know about inflammatory breast cancer and would be spending my days working as a nurse midwife! That was my plan 25 years ago before inflammatory breast cancer rudely interrupted things!

Those who knew me “BC” (before cancer) tell me they are surprised at the things I’ve done over the past 25 years. When diagnosed I was a “good pastor’s wife”, usually working quietly in the background making sure things were going smoothly but not interested to be in the spotlight and certainly not willing to speak out publicly. Apparently there is something about being told you’re going to die soon, when you’ve just turned 41, that reminds you life isn’t a dress rehearsal….this is it!! I was working in outpatient mental health at the time and worked throughout my treatment. When I reached one year from diagnosis I decided to complete my RN (I was an LPN at the time). Many thought I was crazy to go back to school. As my body began to struggle with the ravages of heavy-duty chemotherapy, I realized I needed more initials after my name, so started an RN to BSN program newly offered at Eastern Mennonite University, allowing me to keep working at my daytime job. It was becoming increasingly evident that I could no longer do the lifting and long shifts required in traditional nursing, so more education would prepare me for administrative work.

Little did I know that the research I was doing for my project thesis, a graduation requirement, would blossom into my new life’s work! I was researching support groups and how the internet might impact a patient being able to connect with others with less common cancers. (I have the bound volume of my project thesis to prove I was prophetic!!) I went into work early each day so I could use the computer for my research. I didn’t have one at home then. Remember, this was 1998-1999 and the internet was a relatively new thing! It was during one of those sessions that I stumbled upon an email discussion list about inflammatory breast cancer (IBC)!! I was so excited to learn there were others alive, dealing with this disease!! It was through this list that I met Owen Johnson, who’d lost his wife to IBC. He was a self-appointed IBC research advocate and anxious to have others join him. In the summer of 1999, while celebrating my graduation and 5 year survival, my husband and I met with Owen in Anchorage, Alaska, and signed onto this new venture, a non-profit called the Inflammatory Breast Cancer Research Foundation.

I was a somewhat reluctant advocate at first but as more opportunities came my way I began to find my voice. Reviewing grants for the Department of Defense Breast Cancer Research Program allowed me to use my medical background as well as my patient experience to influence research and I enjoyed it! As the organization developed, so did my comfort and experience in the advocacy world. I eventually gave up my ‘day job’ in nursing to take on full-time advocacy work, taking on more roles within the Inflammatory Breast Cancer Research Foundation and beyond. Working with a variety of researchers to facilitate IBC research, helping patients find a appropriate diagnosis and treatment, guiding patients in finding clinical trials, and attending lots of conferences have all helped shape my 20+ years of advocacy. It’s not the career I’d planned but I’m grateful for all the experiences and the amazing people who’ve come into my life as a result. Also, it continues to break my heart that so many of those amazing people have been stolen by this crummy disease, in spite of everything we try to do to stop it.

Right now I’m serving as an advocate mentor at the American Associate for Cancer Research (AACR) Scientist <-> Survivor Program. During the conference I’m helping six patient advocates, representing a variety of cancers, navigate this meeting of over 22,000 people. Most of these advocates haven’t been to a conference of this size and I’m helping them plan their schedule, figure out the sessions they should attend, then work together to present on what they’ve learned at the end of the 4 days together. I was fortunate to have advocates who helped mentor me along the way and feel a responsibility to ‘pay it forward’ for those getting started in advocacy. If we don’t do that, the important patient voice in research may be lost.

Before coming back to my hotel room tonight to finish this blog, I stopped to chat a moment with some researcher/friends from Indiana University. As I bid them goodnight, I said I needed to get back and finish this blog post and told them what I was writing about. When I shared the titled they laughed and suggest the alternate title and I promised to add it. I’m getting to be one of the ‘old timers’ in the advocacy community. I’ve never cared if people remember my name, but I do hope they remember my passion, dedication, and commitment to doing what I can to change things for the better not just in IBC but for all cancer patients.

So, bottom line….I’m fine with being known as someone who “kicks butt and takes names”!!

Littering among the beautiful California redwoods.

(Before you report me to the Sierra Club or other conservation organization, I should note that my title is about metaphorical littering)

While I officially began my cancer advocacy in 1994, I’ve been a nurturer and caregiver most of my life. I always gravitated to helping-type jobs like cooking in a daycare center, working in nursing homes, and later, a variety of nursing care areas. As a pastor’s wife, I often found myself in that same role with church members too. So it was no surprise that I opted to take my cancer experience and find a way to help and take care of others facing the disease.

Twenty-plus years of advocacy work can take an emotional toll. The endless losses, the survivor guilt, and the feelings of never doing enough can lead to compassion fatigue and burnout. I thought I was handling it all pretty well so when my friend Wanda suggested I apply for a retreat called Re-Fresh, I kindly declined saying there were others who needed it much more….I was fine. But…Wanda persisted and as the application deadline approached, she tried again, wore me down and I applied, not at all sure what I might be getting into if accepted.

Re-Fresh is billed as an “opportunity for leaders/advocates dealing with compassion fatigue and burnout to unplug, recharge, and think about the future.” There was something else about a “fresh perspective” and “recharge” too, so I figured ‘why not’! It all sounded good. I was up for a few days at a beautiful retreat center outside Mill Valley, CA and could use some new skills to be more effective in my work. Little did I know!

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IMAG3800There was some security in already knowing 2 of my fellow retreat members. However, in a very short time I got to know the other 14 and 2 leaders. We wasted no time in getting down to the business of self-examination (did I sign up for this???) Asking ourselves hard questions and facing the answers. Grueling, gut-wrenching stuff….yet we kept at it. One minute laughing at ourselves and each other, then tears and hugs. It was an emotional rollercoaster (Terri-fying!) and I was thankful we were on the ride together.

Kudos to Terri and Janet who lead us through this mine field of emotions, and for their willingness to join us in sharing…strengthening the bonds we were forming. From the drumming, sharing “High-lows”, awesome meals, and one on one moments, we became a tribe.

For me, cancer advocacy is a 24/7 thing. I tried to block off the 5 days for the retreat but when the husband of my dear friend Anya (a member of my organization’s board) needed support, I had to be there, if only by phone. As I learned the cancer thief had stolen my friend, I struggled with wanting to leave so I could ‘be there’ to help. It was during this very dark and difficult time that I allowed others to take care of me….something I seldom do. I am forever grateful to my tribe for their hugs, caring words and willingness to ‘hold space’ for me. I was at the right place.

No doubt we left a lot of “litter” up on that mountain top, among the redwoods. During morning yoga walks, throwing our hurts and resentments into the fire, and exploring dark corners of our lives, we unpacked a bunch of stuff and left it lying here and there. Hopefully it didn’t get repacked to go back home with us!

A big thanks and hug to Terri, Janet, and each new friend/tribe member for helping me grow and get rid of some baggage. While I wasn’t sure what to expect, Re-Fresh certainly delivered on this objective: “A chance for leaders/advocates to gain fresh perspectives & a new sense of what is possible for them.”

Namaste…..

*A Fresh Chapter Description: A Fresh Chapter (AFC) is a non-profit offering U.S. and International volunteer travel experiences to cancer patients, survivors and caregivers to help them heal the emotional scars of cancer while serving others – and in the process, reclaim their lives. Terri Wingham, a breast cancer survivor, founded AFC in 2012 and the organization now offers programs in Costa Rica, India, Peru, South Africa, and the U.S. Patients and caregivers (men and women ages 18+) can apply online for programs that incorporate a 1-2 week immersive volunteer experience into a 6-month framework of online tools, resources, and supporthttps://afreshchapter.com/

Greyhound, shared rooms & packed lunches….fiscal responsibility in advocacy.

I was a reluctant advocate. When inflammatory breast cancer (IBC) rudely interrupted my life, I was making plans to go back to school and become a nurse midwife. After a variety of nursing jobs I’d found my calling….or so I thought.

Then I learned how cancer steals. It stole my sense of health, my career plans, and my hope for a future. However, given some time, I managed to steal some of those things back. This ‘new normal’ that was now my life brought it’s own set of opportunities. By starting a breast cancer support group I became a part of the local breast cancer community. Before long I was reviewing grants for the breast cancer program of CDMRP (Congressionally Directed Medical Research Program) run through the Department of Defense. All new territory for me!

In 1999, when the Inflammatory Breast Cancer Research Foundation (IBCRF) was starting, I volunteered to respond to the calls that came to the toll-free phone line. Talking to people with worrisome symptoms, giving clinical trial info, and often just being a listening ear felt like an extension of my support group work, but specific to IBC. Each of us volunteering fit our duties around our regular jobs. Our advocacy work was a sideline, not our focus in those early days.

As the organization became more involved it was clear we needed to be more visible to develop credibility. That meant attending conferences so we could connect with other advocates, researchers, and clinicians. Those meetings came with a high price tag so we’d limit who would attend and looked for ways to keep the costs as low as possible.

As a pastor’s wife (now retired pastor) I learned to be frugal. Many years we had a very meager salary and would manage on our garden produce, raising chickens, and eating lot of eggs shared by a neighbor in exchange for child care. I know how to stretch a dollar! Those skills have come in handy in the non-profit world as well. It can be challenging to keep to expenses contained while also being an active part of the broader advocacy community.

Fortunately I know many other advocates who are also on a tight budget and are willing to share a hotel room and search for the cheaper hotels. Now and then we get a lemon but we’re only there to sleep and shower, so we make it work. We look for scholarships to help cover costs and pack our suitcases with granola bars and other foods to avoid high priced meals in cities and airports. Cheese, crackers, and fruit from home beats airport food any day!

Of course we have to fly to some conference locations, so I might serve on the steering/planning committee for the meeting, participate as a speaker, or otherwise help by putting in some ‘sweat equity’ to get some help with expenses. Now and then people will donate miles from their airline programs to help us send volunteers to meetings. I regularly use Greyhound and Amtrak when available for my destination. Not very glamorous but gets me from point A to point B at a reasonable price!

I’m grateful for ride-sharing programs like Uber and Lyft, providing a less expensive alternative to taxis and shuttles. I’ve met some interesting drivers as well as passengers when I share a ride. Travel can also become an opportunity to educate folks about IBC, so I always have brochures and bookmarks handy to share!

Back in 1994 when IBC caused a major detour in my life, I never dreamed I’d be able to take that experience and use it as a catalyst for something positive. My role in research advocacy has brought wonderful people into my life and given me opportunities I never anticipated. When someone asks why I’m still so involved in cancer when my own diagnosis was 24 years ago, I realize they don’t understand what motivates me. I’m compelled to “give back” for all these bonus years I’ve been given. It’s a responsibility I take seriously.

With all the those amazing opportunities come responsibility. IBCRF relies on donations to fund our work. As Executive Director, I am accountable for how those donations are used. Our Board secretary and treasurer do an amazing job of financial accounting so we can follow each dollar and document how it’s used to support our mission and goals. In addition, when I receive honoraria I’m usually able to have the check made to IBCRF. That allows us to use those funds to help with travel expenses and other administrative costs, so donations are available to fund research.

As an organization we like to operate with a low profile, quietly working with researchers, clinicians, and patients to develop clinical trials, exploring improved diagnostic methods for IBC, and collaborating with other organizations to accomplish goals that will improve the lives of those touched by IBC.

Recently one of our Board members remarked that she is honored to serve on the Inflammatory Breast Cancer Research Foundation Board. She added that she’s proud of our fiscal responsibility and we should make sure to share that…...so I just did!

*Contact us if you’d like to share your gifts as a volunteer or consider a donation to support the work of the Inflammatory Breast Cancer Research Foundation

Maybe I should play the lottery?

I’ve never been one to gamble, although one could say that every time I get in a car I’m gambling with my life! I suppose the same could be said for flying or even crossing the street. Given the rise of unexpected violence around the country I could even lose my life shopping in a mall or being in some other public place. In spite of those risks I don’t sit at home or worry each time I leave the house and even though it’s tempting at times, I don’t buy lottery tickets. That gigantic powerball or megabucks number is enticing but as my husband likes to say, “each time you don’t play, you’re a dollar winner!!”

Seeing another spring reminds me I’ve already won a lottery of sorts. I was blissfully unaware that my breast pain, itching, and increasing size (of just one breast) were symptoms of inflammatory breast cancer. I learned the basics about breast cancer in nursing school and thought I had a pretty good understanding of women’s health issues. I had regular check ups that included a PAP smear and clinical breast exam. I’d had one mammogram at age 37 when a local OB/GYN office added mammography screening with their new equipment. I hadn’t felt any lumps but took advantage of the discount.

As I got out of the shower one morning and hurried to get ready for work, my husband said, “your breast looks sick.” I admitted I’d been having sharp, shooting pains as well as itching and you could see the breast was enlarged. He questioned why I hadn’t been to the doctor and I gave some lame excuse and promised to make an appointment, which I did. A few days later I saw our family physician and received a thorough exam. He didn’t feel any lumps and didn’t think it was anything serious but sent me for a mammogram.

The mammogram was uncomfortable and I was a bit surprised when the tech told me “It’s fine, you can go.” When I asked if she’d told the radiologist what my breast looked like she said she had. She could see I was not happy so offered to get the radiologist. I suggested he look at my breast because it was swollen and painful. He smugly replied, “I told you the mammogram is fine, you’re a hypochondriac nurse…go home and stop whining!” I was shocked but went back to work and tried to dismiss it from my mind, but that was easier said than done.

Over the course of the next few months the breast got larger and more painful, even though I’d tried to eliminate caffeine from my diet and was wearing new, supportive bras. During the next months I celebrated my 41st birthday and we welcomed our first grandchild but I worried that my symptoms weren’t going away. In fact, things were getting worse. To make matters worse, I had a return of gallbladder attacks and wondered if the two were connected. After a couple attempts to see our family doctor I finally got an appointment. He was confused that the breast symptoms hadn’t resolved and decided to send me to a surgeon for both issues.

Just two days later I was in the surgeon’s office. He calmly examined the breast and underarm then suggested a needle aspiration where he felt some thickness in the breast. It was unsuccessful so a biopsy to remove some skin and deeper tissue was done. He also scheduled a gallbladder ultrasound for the next day. I went back to work with an icepack in my bra at the biopsy site, wondering how I’d fit gallbladder surgery into my busy schedule.

It seemed the ultrasound took a long time the next day. Afterward I was sent to a conference room to wait for the surgeon. I was looking at my work calendar trying to figure out how I’d squeeze in a surgery with my heavy client load at the mental health clinic where I was the outpatient nurse. When the surgeon came in I could tell by his expression something wasn’t right. He sat down and took my hand….I asked when we would be doing my gallbladder surgery and he resplied, “I hope to get to that sometime but you have a very serious, aggressive form of breast cancer called inflammatory breast cancer. On a scale of 1-10 this isn’t what you want.” I said, “I didn’t know I wanted any” and chuckled. The surgeon didn’t smile, just went on to say I needed to start chemotherapy immediately and he’d already spoken to the oncologist who was waiting to meet with me. we went through a maze of stairs and arrived in the oncology clinic.

Still in a bit of a daze I met with the oncologist and heard him say I needed to start chemotherapy immediately and wouldn’t be able to drive home. I hadn’t expected a cancer diagnosis, so I’d gone to the appointment alone. I couldn’t call my unsuspecting husband and say “come get me I’ve just had chemotherapy.” It was Friday and already lunchtime, I needed to adjust to this news, arrange things at work, and tell my family the diagnosis. After asking some questions and pushing for statistics (bad idea), I went back to work with some paperwork and an appointment to start chemo on Monday afternoon.

Rather than recount the gory details of treatment suffice it to say I spent the next 7 months receiving grueling chemotherapy (it was a new idea to give chemo first back then), followed by a radical mastectomy then 7 weeks of daily radiation. I did have the gallbladder surgery 3 weeks after finishing radiation just as my hair was starting to return. I felt like I’d been run over by a truck but kept working since our insurance was tied to my job.

I don’t often tell my personal story anymore, instead I try to be a voice for all IBC patients. Many know I went through treatment for inflammatory breast cancer (IBC) although some probably aren’t aware of the specifics. My husband says the diagnosis lit a fire under me to accomplish life goals. Before cancer I’d planned to become a nurse midwife but after cancer I realized that was no longer realistic, however I did want to complete my degree. While still working full-time, I completed an RN to BSN program. While doing research for a graduation project I met others with IBC who were part of an e-mail discussion list. How exciting it was to find out there were others alive!! (This was long before social media) Connections made there resulted in the formation of the non-profit Inflammatory Breast Cancer Research Foundation and my official launch into advocacy work. Little did I know how that would change my life!

You see, my diagnosis was in March 1994. The initial symptoms that sent me to the doctor were in late August of 1993. That’s why I said I’ve already won the lottery. When I was diagnosed IBC survival was about 3% at 5 years. When pushed for my prognosis the doctor said hopefully 12-18 months. By diagnosis I was 41 years old enjoying a 3 month Ginny-Kassandra 1995old granddaughter. When I reached a year from diagnosis I wrote a letter of thanks to those who had been my biggest support. Holding and rocking a sleeping baby was some of my best therapy! Of course a 1 year old wouldn’t understand her role in helping me so I asked my husband to give her the letter “when the time is right”, assuming I wouldn’t be around to do it. Well, she finally received the letter the week I celebrated 20 years from diagnosis, just days before her wedding. That’s winning the lottery, folks!

Another of the ‘lottery prizes’ I’ve received is seeing that little granddaughter grow up, get married, and have her first child! No amount of money can match the feeling of holding my great-thumbnail_IMAG1884granddaughter! Now we’re excitedly waiting for her little sister to arrive later this summer. I never dreamed I’d live long enough to have 9 grandchildren (we also have 2 angel grandchildren) and 1 1/2 great-grandchildren! As I said, it’s like winning the lottery every day! I wish such joys for everyone diagnosed with this crummy disease.

Things have improved for those facing a diagnosis of inflammatory breast cancer (IBC) since 1994. However education and awareness of the disease have been a slow process and need to continue. When we started the Inflammatory Breast Cancer Research Foundation we could only find one person doing research on the disease. The field is still rather small but we’re working to interest more young researchers by joining with other organizations allowing us to accomplish more together! If you’d like to join us and help me celebrate 24 yr by supporting needed research click here to donate!

As I said, I’m not what you’d call a gambler, however my experience shows that statistics can only tell you so much. When the doctor told me the prognosis I reminded him that I’d taken statistics in college so someone had to be in that 3%….and I was aiming to be one of them. Now don’t assume that I’m someone who believes “positive thinking” will keep you alive, I don’t. However trying to remain optimistic certainly improved my day to day outlook and ability to face the challenges ahead.

So what do you think….for whatever reason I’ve certainly beaten the odds, even by today’s improved stats. Is it time to buy a lottery ticket!  (smile)

 

Looking back while looking ahead

Like many people I find myself at the end of a year looking back on events of the previous months, both the happy and the not so happy ones. As I shared in my last blog, one of the perils of advocacy work is dealing with loss. Each passing year has added to that growing list of IBC pathfinders and I find coping with the losses harder and harder. Maybe it’s my age and no doubt some guilt that I’ve managed to live so many years beyond expectations. Each senseless loss reminds me that we must keep pushing for more and better research to improve diagnosis, treatment, and survival of inflammatory breast cancer and all cancers.

Having turned 65 a few months ago, I realize that nearly 1/3 of my life has been spent dealing with inflammatory breast cancer (IBC) in one way or another! Back in 1993, when my symptoms started, I’d never heard of a breast cancer without a lump. Although I’m a nurse, I was woefully unaware of potential symptoms of breast cancer. We’re taught to check for lumps but I didn’t know that swelling, redness, pain or itching were possible symptoms of breast cancer! When I was finally diagnosed in 1994 and began looking for information (remember this is pre-internet) there wasn’t much. I called the National Cancer Institute and they sent a single typewritten page that basically said, “this is serious and rare….five year survival is 3%”. My doctors, when I pressed them for statistics, said the same thing. However, I’m a ‘glass half-full’ kind of person and was aiming for that 3%. As it turns out, I am one of that 3% and while the odds have improved over the last 23 yr. IBC is still a deadly disease, stealing far too many lives.

Nasty Kate 2.17

It breaks my heart that in spite of all we do as an organization, we continue to lose so many amazing people. As I look back on 2017 I’m reminded of Kate and her fierce determination to survive. It keeps pushing me onward what I’m tired and discouraged. Thinking of her also makes me smile as I remember our antics!

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Krysti will always be another driving force. I remember her willingness to do clinical trial after clinical trial to buy more time. It’s in her memory that I work as an advocate to push IBC trials in SWOG and TBCRC.

As much as I hope that each IBC person I encounter will experience the same longevity I’ve had, I know that may not be the case. However, I also feel strongly that each person needs to see themselves as an “n of one”, meaning their situation is unique and no one can predict their outcome. Kate and Krysti both represent that “n of one” as they outlived expectations in spite of the severity of their disease.

Not long after we started the Inflammatory Breast Cancer Research Foundation in 1999, I learned about an essay titled “The Median Isn’t The Message” by Stephen Jay Gould. It was written in 1985 a few years after his diagnosis with a very aggressive form of cancer. He reminds readers that statistics only tell us outcomes for a very narrow group of people. As Gould states, “They (statistical distributions) apply only to a prescribed set of circumstances……….If circumstances change, the distribution may alter.” Had I know of this essay when I was diagnosed, it would have reinforced my decision to focus on being in that 3%.

For those newly diagnosed with a disease like IBC it can be frightening to read the survival statistics. I’ve talked to folks who felt it would be useless to even do treatment given the dismal outcomes. Back in 1993/1994 there was very little IBC information available. I was blissfully unaware of how others were coping with their diagnosis. In fact, it was nearly five years after my diagnosis before I interacted with another IBC patient. I was excited to find out I wasn’t the only one who was still alive!

These days, thanks to the worldwide web and social media, there’s an abundance of information, albeit some of it questionable. However, all that information may not be as helpful as it sounds. I’ve watched what happens, especially on social media, and see that too much information can be as dangerous as too little.

Today, a newly diagnosed patient can find an online disease group and be instantly connected to dozens or even hundreds of others with the same disease. While that can be helpful, it can also be overwhelming. It means that while coping with their own situation they are regularly bombarded with messages detailing the struggles of others. One click and they read news of metastatic spread, others asking help for surgical or chemotherapy complications, and all too frequent death notices. It can be a lot to handle when you’re already fragile. Also, it’s easy to forget that the online group may not represent the real-world disease population. Those doing well may not be active in such a group, having put their disease behind them. Consequently they may not be represented in those forums. Just like Gould notes in his essay, it’s important to look at the whole disease population and realize you are not just a statistic.

Looking forward, I’m grateful that in spite of various treatment and age related health issues, I’m still able to put in 14+ hr. days as an IBC advocate. I’m grateful for the amazing people who have come into my life as a result of my IBC diagnosis and advocacy work. I’m also excited about the advances and increased survival I’ve seen in 23 years.

Bald Mama and boy

When I was diagnosed, metastatic disease usually meant ‘get your affairs in order, sooner rather than later’. Thanks to targeted therapies and more treatment options some people, like my friend Anya diagnosed while pregnant with her son, are thriving. Metastatic IBC has meant continued treatment of some kind since recurrence but she cherishes being able to watch her son grow into a thoughtful young man.

Anya and Noah Cafe Sabarsky

While the losses continue to break my heart I look forward with hope that more effort will be put into improving the lives of those dealing with metastatic disease. I want children to stop losing their mothers, husbands to stop having their wives stolen, and all of us to no longer have those we love taken from our lives by IBC or other cancer.

Some doctors use the word cure when we reach a specific number of years past a cancer diagnosis. My doctors use the acronym NED (No Evidence of Disease). Even though it’s been 23 years since I was diagnosed they say I’m not cured until I die of something else!

One third of IBC patients have metastatic disease at diagnosis, another third become metastatic. I’ve read that 30% of early breast cancer patients will have will also become metastatic. Doesn’t it make sense for all of us to work toward ending this crummy disease? Let’s work together to educate, empower and support quality research!