We’re aware….now it’s time to DO something!

As I write this, Pinktober is creeping close. I used to love October with the feel of fall in the air. It’s my birthday month (and my daughter’s) and it always felt like the trees were showing off just for us, in celebration. Then I was diagnosed with inflammatory breast cancer (IBC) and October was forever changed.

That first October, after my IBC diagnosis early in 1994, I was finishing radiation treatments and planning gallbladder surgery that had been put on hold. For the most part, I was oblivious to any breast cancer awareness activities, if there were any. However, I was certainly aware of breast cancer after enduring 8 months of intense treatment. Plus, my family and friends were now more aware than they’d been before, at least I think they were. At that time cancer wasn’t a regular media topic like it is today. I knew a few people who’d had breast cancer but my exposure to the disease had been limited. Like most people, I didn’t think I was at risk at 40 years old and no family history. I was wrong!

My granddaughter helping me cope with treatment

Over the years, as I became more and more active in breast cancer advocacy, I was given opportunities to share my cancer experience. Often these events are in October and people want a “feel good” story to encourage those in attendance. Since I’m usually representing the Inflammatory Breast Cancer Research Foundation when I speak, I make sure people understand that breast cancer isn’t ‘pink and pretty’. There’s a reason our organization uses red, white, and black in our logo. IBC is a nasty disease. One third of those diagnosed with IBC have distant metastasis from the start and another one third develop metastasis during the course of their disease. Also, IBC accounts for a very high percentage of the annual breast cancer deaths. Breast cancer education/awareness isn’t a “feel good” story, it should be about the truth of a disease that still steals over 41,000 lives annually. When we talk about breast cancer, we need to tell the whole story.

I love what Dr. Susan Love shared with the above picture, “It is important to remember as the Pink Fog settles on the land that the breast cancer world includes everyone from those carrying a mutation for risk to those with metastatic disease. It isn’t a contest but rather a club, that no one really wanted to join! Let’s be inclusive and celebrate all the members!” (wise words, Sue!)

While we’re on the subject of Pinktober, I’d be remiss if I didn’t mention pink marketing. Over the years we’ve been bombarded with pink products promising “a portion of the sales” will go to “breast cancer research”. Seldom it is clear how much money will be given and who will receive it. This is great for corporations who tug on our hearts to open our wallets. They get the corporate tax benefit and PR while we buy yet another thing we didn’t really need. Plus, who knows if the money ever gets to the designated charity? I remember having this discussion with my mother. After my diagnosis of IBC, she became the prime target of pink marketing. She thought her purchases were helping me and others dealing with breast cancer. I finally told her that if she wanted a pink mixer, I’d spray paint hers pink and she could make the donation to Inflammatory Breast Cancer Research Foundation so she’d get the tax benefit and good feeling! That interaction got through to her and she began telling her friends the same thing, stressing the importance of knowing more about who you’re donating to and how they use those funds. She’d never looked into the business practices of non-profits, just donated to those she thought were “doing good things”. She learned about Network for Good, Guidestar and other places containing info about non-profit groups and how they spend their money. (*It’s important to note that non-profits with smaller budgets don’t qualify for Network for Good, so don’t despair if you don’t find them there). Before you purchase that item or make a donation, find out where the money goes and make an informed choice.

One last thing….as we move into Pinktober and social media is full of breast cancer games and other drivel, make the decision to DO something that will benefit those dealing with the disease. Wearing a breast cancer t-shirt, ‘liking’ or ‘sharing’ something on social media, or playing some Facebook game doesn’t make a real difference. Offer to drive someone to chemo, provide a meal or restaurant gift card, set up childcare or housecleaning, or just be there to provide a listening ear to someone in the midst of the daily cancer struggle. For some, there is a light at the end of the treatment tunnel, for those with metastatic disease it’s “treat, scan, repeat” as long as they’re alive. Metastatic patients may not ‘look sick’ but that doesn’t mean they don’t need your help and support. Offer…don’t just ask “what can I do”, most aren’t good about asking for help. The ball is in your court.

This October, stop the awareness ‘pinkwashing’ and make a difference by DOING something!

We’re Still Here! Reflections on Celebrating 21 Years of Inflammatory Breast Cancer Research Foundation

Inflammatory Breast Cancer Research Foundation…The first non-profit dedicated specifically to inflammatory breast cancer research, advocacy, and education!

Many years ago a handful of people who met through an email discussion list, decided to start a non-profit. What were we thinking? What we lacked in non-profit experience we made up for in passion and dedication. No office? No problem! We’d be web-based (it wasn’t called virtual then) and all volunteer. The 501 C 3 paperwork was filed, a website patched together, and a toll-free phone line set up. We were in business! 

P1000385

It was my job, as one of the volunteers, to respond to the calls to the toll-free line. Callers left a message and I called back after work hours or on the weekend. I did a lot of “talking people off the ledge” when they or a loved one had just been diagnosed with IBC. Hearing that I was 5 years out from diagnosis often calmed those on the other end of the line. I kept detailed notes of each call and over 21 years have filled 7 steno-pad tablets with 2-3 lines detailing the message and response for each call! Flipping through those pages is like a walk down memory lane and always brings tears to my eyes as well. 

A seldom mentioned challenge of advocacy work is the pain of dealing with loss. I don’t think we were prepared for the intensity of the on-line relationships that developed with people we seldom met in real life or how deeply we’d feel their death. Our society loves to celebrate the “survivor”, the “pink warrior”, the person who “beat the disease”. The media loves those stories as well and skips over the others. No matter how much we do to treat it, cancer still steals lives and that leaves us heart-broken and at a loss. We each find a way to cope with those losses, allowing us to keep going, but that doesn’t diminish the pain and even guilt we feel. My advocacy work is guided by the voices of those amazing people, who savored each day, and they challenge me to keep going and amplify their voice. My continued living, well beyond my “expiration date”, means I have a responsibility to make a difference for someone else and help others live longer as well.

jsadvocacyboothempty

So much has changed in 21 years! In 1999 few people had heard of IBC unless they, or someone close to them, had been diagnosed. It was also hard to find researchers interested in studying IBC. We realized we’d have to start knocking on doors if anyone was to listen and join us in this quest. That meant getting involved in the oncology community by participating in ASCO, AACR, SABCS and a multitude of other meetings where we made important connections that gave us a seat and voice at the table to move IBC research forward. These meetings also gave us the chance to meet amazing patients/advocates from across the US and other countries. Connections were also made as Board members served as peer-reviewers for grant programs such as the Dept. of Defense Breast Cancer Research Program, California Breast Cancer Research Program, the Avon Foundation and others. Review meetings gave us the chance to meet and interact with a variety of researchers in the breast cancer field and the opportunity to share about our work and need for their involvement. 

IMG00056-20110322-1611

With the help and oversight of our Medical Advisory Board we’ve funded many important IBC research projects at NYU, Duke, Dana Farber Cancer Institute, Indiana University, NCI, and others. Also, we’ve collaborated with other organizations to support IBC research, building relationships while allowing our dollars to go even further. In addition, we were actively involved in the lapatinib (Tykerb) trial for IBC, working closely with Dr. Neil Spector and colleagues. Since that time we’ve helped with clinical trial patient educational materials and continue to help bring IBC specific trials to patients through existing clinical trial networks across the country such as SWOG and TBCRC, Having IBC trials available at more sites makes access to trials easier for patients and reduces travel, benefitting all involved. 

DSCN0103

Over the years we’ve done some amazing things as an organization, if I do say so myself! I had to step outside my comfort zone and learn that it’s OK to be a squeaky wheel to get things done. (I do try not to be obnoxious!) It took 3 years but we managed to convince the NCCN to develop and add an IBC treatment guideline (2008) as well as update the breast cancer screening guideline to more clearly help physicians in the IBC diagnostic process (2010). We opened an IBC specific biobank in 2005, under the supervision of an IRB (Institutional Review Board), to aid IBC research efforts. Providing one on one support to countless patients and caregivers over the years, both on-line and by phone, as well as helping many find clinical trials or a second opinion has taken many hours of volunteer time. That kind of personal navigation and attention can make a huge difference for patients, especially when coming from someone who’s been through IBC treatment. Through our work with the NAPBC a 1 hr. IBC physician education webinar was produced and received close to 700 registered viewers! The program is still available on-line and viewers can receive medication education credit after completion. Dr. Beth Overmoyer,of the Dana Farber Cancer Institute’s IBC Clinic, gave an amazing overview of the diagnosis and treatment of IBC.  In addition, thanks to educational grants, we were able to provide webinars on topics like skin metastasis, intimacy & sexual health in long-term treatment, and palliative care. I could go on and on listing accomplishments but that’s not me. I believe our longevity speaks for itself.

It’s tough keeping a non-profit going without paid staff, especially now during a pandemic. At least we haven’t had to lay off staff and we already work remotely, so that’s not a change for us. Our hearts go out to the organizations that have had to make major changes. Thankfully we have some amazing volunteers! Grateful to have 4 IBC thrivers (1 is metastatic) as part of our Board of Directors. They each bring an important voice to all we do keeping patient needs at the center, always. Also, we’re indebted to our faithful donor community who believe in what we do. We wouldn’t still be here without their ongoing financial support and encouragement. (we’d love to have you join them by donating!)

Back in 1999 we dared to think there’d be no need for IBC research and advocacy in 10 years, our job would be done, but we were wrong. Amazing advances have been made, survival has improved and there are many more treatment options but IBC continues to steal lives and remains poorly understood and understudied. There’s more work to be done and we’re committed to being a leader in bringing about the changes needed to ultimately work ourselves out of a job.

HAPPY 21st BIRTHDAY to the Inflammatory Breast Cancer Research Foundation! Pass the cake!!

Happy-21st-Birthday.-Make-a-wish.-Black-and-white-decoration-elements-FB

Change: the only constant

As usual, fall was busy with lots of meetings, conference calls and a quick visit to family. Thrown into all that busyness was the dreaded “Pinktober”, bringing even more activities.

Traveling to Lisbon, Portugal for the 5th ABC (Advanced Breast Cancer) Consensus Conference, in November, was such an amazing opportunity! 20191117_164247 (1) This was my fourth time at this extraordinary meeting. I so appreciate the opportunity to meet and learn from advocates, physicians, and researchers from around the world. I’ve made new friends and learned so much. Becoming more involved in the global advocacy community has enriched my life,  been challenging but also a positive change. (2019: my friend Dr. Fatima Cardoso, Champalimaud Clinical Center, Portugal)

Spending nearly 24/7 involved in activities that support clinical trials, educate patients, or other cancer related projects your own disease experience gradually fades into the background. However, I was brought back to reality just before Thanksgiving, when I was diagnosed with early stage endometrial cancer. OK….been down this road before and this time it didn’t sound nearly as scary as the inflammatory breast cancer diagnosis twenty-five years ago. It’s just a speed-bump, I kept saying to everyone, and I meant it. Just when you think cancer is behind you, it can sneak up and life is changed, once again.

In spite of all that was happening, I was excited to be a part of my 17th consecutive San Antonio Breast Cancer Symposium (SABCS) in early December. I remember my first time at the conference. It was much smaller then, but I was still a ‘newbie’ and didn’t know many in the advocacy community, so it felt big. I was in awe, getting to hear talks by physicians and researchers I’d admired from afar. Admittedly, much of the information went right over my head! Even now, after 17 years, I’m still in awe that I get to work with so many amazing and brilliant people! Many of those physicians and researchers have become personal friends and my amazing advocate circle has grown exponentially, adding more friends! Being one of the old-timers has it’s advantages!  (2019: here we are… advocates tweeting for #BCSM!)                                                                    ENpOA1mUUAAIZoy

It felt strange to be at SABCS this time without my crew, a group of seasoned advocates and dear friends who’d shared this meeting experience year after year. We’d discuss the days topics each evening over wine and chocolate, in comfortable ease.P1010960 Spending time with these awesome women always fed my spirit and helped me be a better advocate and person. Their friendship is priceless. Alas, each has moved on to other things, not always by choice. I miss spending time with these friends….just another reminder that things change. (2012: Debbie, Marj, Maria, Musa and Sara at Rosario’s)

In 20+ years of advocacy I’ve seen a lot of change. When we started the Inflammatory Breast Cancer Research Foundation (IBCRF) in 1999, the breast cancer advocacy community was relatively small. We had to earn our place at the table and it was challenging. Many saw advocates as “too emotional”, “don’t understand the science”, or “not professional”. So we studied the science, kept our emotions in check (even when our friends were dying), and joined the professional organizations and meetings (like ASCO, AACR, etc). There were no metastatic groups then. Those diagnosed with advanced disease seldom lived very long. We tried to be the voice for all, struggling for better diagnosis, treatment, and outcomes. Over time more and more non-profits have popped up. Some excel in education or support, others in research advocacy, while others in financial help. Advocacy can be a noisy space with lots of loud voices and little collaboration. We can be as siloed as the researchers.  Things always change, but not all change is helpful.

As we begin a new decade, having marked the first 20 years of IBCRF, we don’t know what’s ahead. There are more and more new, younger faces in the advocacy community. Very passionate, caring, and capable people ready to keep working for change. Will any of them step up to join us as a voice of action for IBC? During these few weeks of recovery, following my Dec. 30 surgery, I’ve been pondering those questions. Being reminded of my own mortality was a bit of a wake-up call. If the work of IBCRF is to continue, what will it look like? Whose face will be “out there”? Who’s willing to join us to put an end to inflammatory breast cancer. Will it be you? Remember…..CHANGE….it is the only constant.

Quotes-About-Change-In-Life-1

 

 

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

cropped-imag0391.jpg

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!

IMAG3805

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!

166477_1835831340603_1385060572_32074258_5684033_n

 

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!