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”!!

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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!

What keeps me up at night…..the perils of advocacy

If someone had told me 20 years ago that I’d be spending nearly 24/7 focused on breast cancer advocacy work I’d have said “yeah, right! “. At that time I didn’t think I’d still be alive in 20 years given my poor prognosis. I was working full time in out-patient mental health, leading a local breast cancer support group, and enjoying my first grandchild. Admittedly, I was involved in some local breast cancer advocacy but since I was working full-time and taking some classes that was plenty and all I wanted.

In 1999 that changed when I met Owen. I learned that Owen’s wife had died of IBC and like me, he was interested in pushing for more IBC research. Initially we met on-line when I was doing research for my college graduation thesis. We finally met in person about the time paperwork was being prepared for non-profit status. It was exciting but we had no idea what we were getting into! Some would say “the rest is history” my husband would say “that was the beginning of a major life change”.

Initially my role was returning calls that came to our toll-free phone line. Still working full-time that was all I could manage. As more people found us, more people called with questions. Next, I joined the Board and gradually took on more responsibility. By 2003 I was named ‘Executive Director’. While a lofty title, it just meant that I was responsible for anything Owen, our founder and president, didn’t want to do! But it also meant attending more conferences, communicating with researchers, and forging relationships with other breast cancer organizations. I was still working at least 1/2 time but it was getting harder and harder to do both and do it well. Returning a call to a newly diagnosed person usually required an hour or more on the phone. It also might mean repeated calls over the next months. A frantic caller worried about symptoms could also be lengthy. All my mental health training was needed when talking to those who were facing their own mortality or loss of a loved one to IBC. The emotional toll was heavy.

The time came when Owen opted to step down, requiring reorganization by the Board of Director. Those actions added the administrative duties to my role as well as serving as     President. Quickly I learned there were multiple different forms to be filed to maintain our non-profit status, details of the banking and credit card system to learn, and lots of business things I knew little about. Our secretary/treasurer was a big help but it wasn’t long before she too moved on to other things. I was already losing sleep worrying if I was keeping up with everything and now we needed a new secretary, new treasurer, new bank, etc. Fortunately a Board member stepped up and was voted secretary but the treasurer position was tough to fill. The first person hired moved on to a full-time job and we cobbled together a make-shift system until finally finding a new person. More new things to learn, new ways of doing things, more forms to complete……more sleep lost!

You’ve heard the story about the frog sitting in a pot of water? The water starts out just pleasantly warm then a fire is started under the pot and very slowly the water starts to get warmer. The frog notices but adapts and stays in the pot. The water gets hotter and hotter and since it’s just a little at a time the frog continues to adjust. Of course we realize that eventually the frog is going to be cooked if he doesn’t get out……but that’s how it is with this work, I know the water’s going to boil but I just can’t say no when something needs done, so I just sweat and lay awake.

Anyone who thinks it’s simple to keep a non-profit solvent, compliant with all the necessary paperwork, and transparent in it’s dealings hasn’t had much experience with the inner workings! I didn’t realize all the monthly expenses involved even without a walk-in office or paid staff. I can only imagine the headaches of being in charge of paid staff and that paperwork! We do have some like our treasurer, webmaster, and others who are paid for services but don’t require the paperwork associated with employees. There are bills for D & O insurance, the toll-free phone line, email newsletter platform subscription, conference call line, postage, office supplies,…….and of course, there’s always something we didn’t expect. It’s hard to budget even with some idea of annual expenses.  However, we never know what the income will be in any given year. We’d love to give more research grants but can only do so when we have adequate money in the bank. It’s called ‘flying by the seat of your pants’! (more lost sleep)

As if the financial stressors weren’t enough to keep me up at night, another thief of sleep is my over-active brain. Trying to help an IBC patient (or their family member) find a clinical trial, a new doctor, or potential therapy option will weigh on my mind until I have some kind of answer. I often do my best thinking as I lay waiting for sleep. The distractions of the day are gone and I can give full attention to the problem at hand. Doesn’t help with sleep but sometimes does help the patient. Sadly far too many of those amazing women go on to have their lives stolen by this crummy disease and I pray for their families as I wait for sleep that often refuses to come. Each loss leaves yet another hole in my heart. It’s a wonder it works after all these years and hole.

My crazy devotion to advocacy has impacted not just my life but my husband’s, and our family’s lives. Life is planned around my conference calls, webinars, meeting travel, and clinical trial work. Fortunately they understand why I do this and support and encourage me, but it has meant sacrifices for them and I appreciate that more than I can articulate. I know my dear husband loses some sleep as well.

So….why do I do it? Why am I still at this 23+ years after my own IBC diagnosis? I must be stark raving mad, right? While that might be true….that’s not the reason. I’m committed to doing this as long as I physically can, because I must. I feel a responsibility to give back for all these years I’ve been given. I’ve had amazing opportunities over all these years and have developed an incredible network of friends and contacts in the oncology community. Those contacts allow me to help patients connect to trials, physicians, and other services. Plus, I have a responsibility to the IBC community that has stood by our organization all these years. They trust me to represent them and be there for them.

AND, by the way….we could use some more volunteers! We need someone with computer expertise to help with our website and  email newsletter, we’d be glad for some help with outreach, and of course we certainly need fundraising help!

Perhaps some new volunteers and a couple big donations would help my sleepless nights. Care to help?

 

 

 

It’s NOT just about us!

Pinktober is coming to a close and the pink merchandise will be replaced by Christmas decorations. We’ll pick through the Halloween candy our kids brought home (or in our case the little bit we tried to stash as we gave out bags and bags!) and make plans for the upcoming holidays. Life goes on….right?

In case you didn’t know, breast cancer doesn’t go away after October. Of course you knew that but unless you’re dealing with it on a daily basis it can be easy to shift our focus to other things.  For breast cancer patients, and those of us in breast cancer advocacy, the focus continues well beyond October.

If you don’t have breast cancer yourself, chances are a friend or family member has been diagnosed. If it hasn’t hit that close to home you most likely know of someone with breast cancer. That involvement tends to keep our breast cancer advocacy, support, and research efforts in our own backyards as well. That’s where we’re most comfortable and what we know.

It’s easy to forget that breast cancer is a global disease. While it is less prevalent in some countries you can see by this graphic the extent of the disease and it’s widespread devastation.

global_e_2In 2010 I had my first global breast cancer experience. I was invited to attend an international inflammatory breast cancer (IBC) conference in Marseilles, France (thank you to the research lab who covered the cost!). While there were no other advocates or patients at the meeting, I learned about the IBC experience in Algeria, Chile, Belgium, France and Italy from researchers and clinicians in attendance. Then in 2013 I had my next international experience when I received a travel grant to attend ABC-2 in Lisbon, Portugal. This advanced breast cancer meeting brought together advocates from a wide range of countries. It was fascinating to get to know them and hear their stories. We spent a lot of time together and I learned a lot about medical care and advocacy in other parts of the world. My breast cancer world was expanding…..

In 2015 I participated in ABC-3, returning to Lisbon (thanks to another travel grant), and enjoyed a 1/2 day pre-conference educational session with global advocates. During small group activities we learned about the challenges faced in limited resource countries and my heart went out to those trying to help patients there. I’ve stayed in touch with some of those advocates thanks to technology.

This past September I was invited to represent the U.S. breast cancer patient voice on an international panel discussing clinical trials. More and more trials are being done globally and it is important that those developing trials understand patient needs and what’s important to patients, around the world. It was clear that patients share many of the same needs and concerns around the world, but there are differences. Again, I broadened my circle of friends to include advocates from Spain, Austria, UK and Germany.

ABC-Guidelines

As I was pulling assembling the data for my poster for ABC-4, I was reminded how my view of breast cancer has changed. It’s easy to view treatment through the privileged lens of someone who has had access to good medical care, even though I have crummy insurance. I don’t face alienation from my family due to my diagnosis and I have access to needed medications although at a premium price. Many in the world have a very different experience.

I want to be listening more and talking less as I spend time with my international advocate friends……It’s not just about us!