A few months ago, I got a call from Danielle Thurston. We are connected in several groups and both write for AdvancedBreastCancer.net, but we didn’t know each other all that well then. What she shared with me created such excitement that I stalked her a little, watching for it to unfold.
In essence, Danielle has created a pictorial version of what I often write about, the experience of living with a terminal disease as a parent. For those of us diagnosed prior to menopause, many of us have young children. Some of us have older children. The bottom line is that when a terminal patient still has children that rely on that parent for care, guidance, and total support, that is a relationship that is affected significantly.
Danielle’s mission is to show the world the visuals of parents and children still living life, still connecting, still growing and thriving. The faces of these men, women, and children should haunt those who discount the significance of this disease or want to turn it into a chronic disease, easily managed. News flash, it’s not. Yet, we parents do our best to ensure our children have the best possible lives despite what we struggle with.
Danielle’s goal is to have at least 116 men and women to participate in this project, highlighting the fact that 116 men and women are killed by Metastatic Breast Cancer (MBC) in the United States, every single day. Think about that for a second, 116 men and women who have families, children, friends, lives, are lost every single day in the United States. When I heard these statistics and started learning more about the MBC population, I’ve been more and more saddened by this epidemic that so many are simply unaware of.
Danielle is seeking to change that lack of awareness with this project. Are you excited? Does this sound like something you’d like to participate in? Well, you are in the right place. Here’s how to participate:
I’ve sent in my pictures and I would encourage each of you with children, no matter how old they are, to participate. Danielle would like to have as many as possible to create a campaign around a significant day to show these and highlight these relationships.
Each October, a group of men and women, of all ages and races and stages of breast cancer, descend on Washington DC to participate in several events. 2018 was the first year Elliot and I traveled to DC for the Metavivor Stampede — I wrote about that experience and you can access that article here. Last year, in 2019, the event was larger and included the play, IV Our Lives — I wrote about that experience and you can access that article here.
As with many of the activities in 2020, the Stampede has gone virtual and that has created a whole lot of different and interesting new tasks, but also new and interesting pros, like being able to include more people, the people who wouldn’t have been able to travel to DC to advocate in person. To answer a question that I often get — NO, you don’t have to be a metastatic patient to participate, just a concerned citizen who wants to support someone you know with metastatic breast cancer. Frankly, that applies to a whole lot of people!
Here are the steps to participate:
First, go to the website for Metavivor to register. Your registration means that you will get updates and details and be counted as a participant in the Stampede.
Second, also on the Metavivor website, view the trainings. Each training was conducted live over the Spring and Summer months, but are available for everyone to view now. Each session is about 30 minutes and is a very similar training that we received in person in DC in 2018 and 2019.
Third, find your state Captain. Metavivor has asked individuals in each state or region to head up the organization and scheduling and help with questions particular to that state or area. I suppose no one who knows me is at all surprised that I’m the Florida Captain, although I think I prefer Organizer, because that’s really what I’m doing.
Finally, if you prefer, you can schedule your own meeting or simply send an email or letter to your representatives.
The Executive Director of Metavivor, Sonia Negley, is your best contact for determine who is the Captain/Contact in your area. Her email is: firstname.lastname@example.org. There are so many different ways to participate and help advance the concerns highlighted by Metavivor in partnership with the Health Lobby organization.
What I’ve offered each of the volunteers here in Florida is that I will attend any of the meetings with them and handle the legal/detail issues and overall asks if they don’t want to. All the volunteers need to do is make sure I have the name of their CongressPerson and are willing to tell their story. I’ll be conducting some training calls just in case anyone wants to practice their story (I like to call this an elevator pitch) before the day of the presentations.
What will we be addressing during this Stampede?
There are three issues we’re focusing on for 2020:
First, thanking our representatives for the increase in funding last year for research into metastatic breast cancer through the NIH and NCI. The trainings break down the specifics for both and how each are funded. After thanking them for the increase, we will be asking for further funds to be allocated and to be earmarked for metastatic breast cancer research.
Second, asking for the The Metastatic Breast Cancer Access to Care ActH.R.2178 (House) and S.1374 (Senate) be sponsored by each of our representatives. This act would eliminate the waiting period for Social Security Disability funds for MBC patients (currently 5 months) and the waiting period for access to Medicare for MBC patients (currently 24 months after qualifying for Social Security). There is precedence for this waiver as ALS patients already are given both immediately.
Third, asking for The Cancer Drug Parity ActH.R.1730 (House) and S.741 (Senate) to be sponsored by each of our representatives. This act would ensure that any cancer drug be the same cost for patients regardless of how it is administered (pill, injectable, IV, etc) and regardless of the place it is administered (hospital, clinic, doctor’s office, home, etc). This bill would assist all cancer patients, not just those of us with MBC.
However you decide to participate, please consider doing something on this issue for all of us. The more voices, the more requests, the more constituents who contact their elected officials, the more progress we can make.
I just had an amazing podcast recorded with my dear friend, Emily Garnett‘s, husband, Christian Garnett with the “Our MBC Life Podcast” and we talked about her projects and his commitment to carrying on her legacy, particularly within the MBC Community. One of her projects was to create a binder for the newly diagnosed with the information we all really need to know; and one of those things the newly diagnosed would need to know is a primer about MBC organizations for those who want to get involved in various levels of advocacy.
This blog post is my effort to create something like that for you all with Christian’s permission. No organization listed here has given me any incentive to include them, I’m always interested in hearing about other organizations, and all explanations or description are 100% my own. If anyone disagrees with my descriptions, please don’t hesitate to let me know! Each organization is listed alphabetically, not in order of how much I love each one.
305PinkPack — this is my favorite local organization here in Miami and it exists to support women through active cancer treatment by assisting with rides to treatment, child care, meals, housecleaning and whatever else a patient needs to navigate chemo, surgeries, radiation, and adjusting to the life of a cancer haver. I include this organization as a reminder that every different location will likely have a local organization focusing on meeting needs in the local community–I’ve gotten involved as a Stage IV advocate to assist those with advanced disease and the founder has been 100% open to learning how to include those of us who will always be in treatment. I’m not aware of all that are available in every location, but would recommend focusing on non-profits started and maintained by breast cancer havers!
AdvancedBreastCancer.net — this is one of the disease specific websites of HealthUnion, LLC and I’m proud to say that I’ve been a content contributor for them since May of 2019. HealthUnion has over twenty (20) websites focused on different diseases and employing members of each community to write and moderate discussions. While I’m biased towards the advanced breast cancer site, the rest of them are also excellent. In addition to the articles and discussion opportunities, the website also contains a trial finder and are always expanding and adjusting to meet the needs of the metastatic community as those of us who are advocates continue to educate them on what the community wants and needs.
Annie Appleseed Project — this is my go to for alternative or complimentary therapies and explaining pros and cons. They have events and seminars and are a great organization to support if this is your passion. The services and focus aren’t just on advanced cancers.
Breast Cancer Research Foundation — this organization does exactly what it says, it raises funds for research. One thing that I really like about them is that they allocate large chunks to metastatic research, some years approximately 50% of the funds they raise, which is in the millions. My dear Emily Garnett participated with her sweet son in a campaign or two and I loved seeing her smiling face.
Connect IV Legal Services, Inc. — this organization is my own non-profit, where I recruit lawyers to do pro bono (a/k/a free) legal services of all kinds for the metastatic community. I’m a little partial to it, since it’s my own brainchild; at the same time, the need for affordable legal solutions is so very needed. Some areas have local groups providing the same services and my non profit is absolutely not intended to replace any of those groups, but to supplement options.
Dr. Susan Love Foundation for Breast Cancer Research — headed by one of the world’s most respected research scientists, herself a cancer survivor, this organization funds very interesting breast cancer research. Their budget isn’t as large as BCRF, but Dr. Love is a force to be reckoned with!
Florida Breast Cancer Foundation — I’m in Florida, so here’s another Florida based organization focused on research, advocacy and education. I’m particularly partial to the grassroots, patient led organizations and this one is no different. Metastatic research and education isn’t a large focus, but we do get a nod or two.
Facing our Risk of Cancer Empowered (FORCE) — for everyone with a germline or inherited mutation like BRCA, ATM, etc., this organization is focused on educating everyone on their personal and familial risk of breast cancer, as well as providing guidance on addressing conversations with family members about their own risks once a patient has discovered a genetic link. They have seminars and information on their website and their founder is a great speaker.
For the Breast of Us — this organization is focused on elevating the stories of women of color and addressing the disparities that exist in breast cancer research, advocacy and treatment. The focus of this organization is on all stages of cancer; however, they do an excellent job including the stories of metastatic women of color as well.
Lacuna Loft — this organization is focused on supporting young women to not just to survive, but to thrive during and after breast cancer treatment. While many of their offerings are focused on survivors, there is a lot of room for metastatic patients to receive benefit from their services. I particularly love their writing workshops and book clubs. This organization is focused on those cancer havers diagnosed under the age of 40.
Living Beyond Breast Cancer — admittedly, this is one of my most favorite organizations because of their commitment to listening to the metastatic community and delivering what the community needs. Each and every person I’ve dealt with in the corporate office are dear dear human beings and I am honored each time I’ve been able to collaborate with them. LBBC has many training programs focused on various different groups and they have embraced the metastatic community wholeheartedly. Their conferences are exemplary, the education is spot on, and their supportive help line and other assistance programs are some of the best.
Metavivor — this organization was founded by a group of metastatic patients and their vision has lived on despite the fact that only one of the original founders lives today. The focus of Metavivor is raising funds for research and advocating for the needs of the metastatic community. Each year, Metavivor organizes a Stampede where metastatic advocates from all over the US gather in Washington DC, march on the capitol and advocate for various policy and legal changes to the Congresspeople and Senators. I’ve been proud to participate in person in 2018 and 2019, and to head up the Florida team virtually for 2020. For anyone interested in research and legislative advocacy, this is your organization to work with!
METup — this organization was founded by two LBBC trained advocates, Beth Caldwell and Jennie Grimes and is patterned after the AIDs activist organization, ACTup. The goal of METup is to provide direct action opportunities, including but not limited to, Die Ins, where attention is drawn to the many men and women who will die each year in the US. As of 2020, approximately 116 men and women die of metastatic breast cancer in the US. If you are interested in more direct action, protests, boycotts, etc., this is the organization for you.
Triage Cancer — founded by two lawyers, this organization is an amazing resource for all kinds of legal issues. They offer checklists and seminars and webinars and a variety of legal resources so needed for the cancer community. The founders literally wrote the textbook on Cancer Law and I have my reference copy marked up, highlighted, and with important passages flagged as I work to guide fellow metastatic cancer havers through their legal issues.
Young Survival Coalition — this organization is focused on those women diagnosed with breast cancer before 40 and offers a lot of great information about fertility preservation and other issues uniquely faced by younger cancer havers. Their conferences are truly exemplary and they do a really good job of addressing a wide variety of issues facing those of us whose lives are interrupted mid-stream by a cancer diagnosis.
I’m sure I haven’t included a complete list of all the great organizations out there — tell me, which ones would you add?
George Floyd was murdered on May 25, 2020 and the world hasn’t been the same since. The outpouring of support from the entire world and the widespread acknowledgments, albeit somewhat late, of the ongoing systemic racism affecting the black community in the United States, has been heartening to see. The number of policy changes that have been proposed and are being discussed gives me hope that perhaps our system will make an incremental or maybe bigger steps towards equal justice under the law. And hope is a powerful thing.
As most of you know, I’m not black, I’m white. Anything that I talk about is framed by the lens of my Midwestern upbringing and influenced by my marriage to a Jamaican-American black man and parenting two brown boys. I’m learning more and more every day; at the same time, I’m still learning to understand the underlying biases that I carry with me all the time. While I believe it is hard for those of us who are white to acknowledge (look up “white fragility”), I believe it is high time that the while people in this country acknowledge their own complicity in the systemic racism in our country.
To be clear, I believe that staying silent or saying “I don’t see color” is to be complicit in the systemic racism in this country. I believe that we must become anti-racist (to borrow a term from the excellent book, How to be an Anti Racist by Ibram Kendi.
I saw this meme recently and it really resonates with me … all the covert white supremacy concepts that have become socially acceptable are so very prevalent.
It’s hard to know, as a white person, the best place to find and obtain an education. I’ve seen a lot of frustrated activists posting about how exhausting it is to continue to explain racism to so many. There are quite a few lists and suggestions being shared, which I think is great. For me, reading books and watching movies honestly depicting the struggles of various groups of black people have been helpful.
One of the books that I read some time ago, very close to when it was published, was Just Mercy. When I saw that it was made into a movie, I watched it right away. In the current climate and because it was streaming free just about everywhere, I came back to the movie and watched it again. Outside of the truly stellar acting, Just Mercy deftly handles the various experiences of black men and women in the judicial system. Pictures truly are able to communicate much more than mere words and those pictures resonate right now in a different way.
As a lawyer, I would say that most people who go to law school talk about wanting to help people. The main character, played by Michael B. Jordan and based on a real activist, Bryan Stevenson, Esquire, put that idea into action. Stevenson graduated from Harvard Law School, obtained a grant to be able to represent people who could not afford legal services, and went to a location in the South near a prison with a death row filled with men whose cases may or may not have been prosecuted properly. He did this because early on in his legal education, he met a man on death row and realized that he was simply another human being, a human being deserving of dignity and fair treatment. Yet, because of his skin, the prisoner Stevenson met was treated very differently than his white counterparts.
One of the most infuriating scenes to me, as a lawyer, is when the main character, Bryan Stevenson, a newly minted lawyer, went to a prison for his scheduled appointments with the death row inmates, his new prospective clients. The guards insisted that they didn’t know him and before he could see his clients, he would be forced to strip naked. When I first watched that scene, I nearly came apart in fury. Frankly, if any guard had suggested I remove one article of clothing when I visited clients in jail or prison, I would have hit the roof and he/she would likely have lost his/her job. And yet, the lawyer in the film submitted to the indignity because while he was a free man, a man who was there to help, a man who was a professional, he was also black and those guards, they saw his skin color first.
I don’t know if there could have been a more powerful image to remind the viewer that despite his training, despite his Harvard education, despite the fact that he’d worked hard and succeeded; he was still just a black man to some and would never be anything but just a black man to those guards, those white men guarding a prison full of black men.
I think every person who starts out with an idealistic view of the world, whether that’s the criminal justice system or maybe the foster care system, has a point where the sheer enormity of the system hits home. It’s like an ocean or some other inexorable force that protects the status quo. One person or one organization fighting that tide is the quintessential David and Goliath conflict. And yet, one of the points made by the filmmakers and the author is that, one person and one organization CAN make a difference.
The movie demonstrates over and over that the champion of justice, of truth, played by Stevenson, did everything he could. He was right and demonstrated that he was over and over; he proved his case, over and over. Despite having the law on his side, the facts on his side, the procedural rules on his side, Stevenson and his client kept getting turned down. The system protected its own, over and over. His constituents, the God-fearing and law abiding citizens who happened to be black, were smacked back down over and over; their testimony disregarded, their color seen first, their guilt before any innocence. their inferiority over their humanity.
When did it change? When did the tide turn?
The tide only turned when the white prosecutor joined the black defense attorney and the black defendant in doing the right thing, in righting the wrong that had been done to the man who sat on death row needlessly for decades. It was only when the white people inside the system stood up to the system, that true justice was done.
At the end of the movie, Stevenson addresses Congress on the issue of the death penalty. I will leave you with his words:
“I came out of law school with grand ideas in my mind, about how to change the world. But Mr. McMillan made me realize that we can’t change the world with only ideas in our minds, we need conviction in our hearts. This man taught me how to stay hopefull because I now know that Hopelessness is the enemy of justice. Hope allows us to push forward even when the truth is distorted by people in power. Hope allows us stand up when they say sit down and to speak when they say be quiet.
Through this work, I’ve learned that each of us is more than the worst thing we’ve ever done. That the opposite of poverty isn’t wealth, the opposite of poverty is justice. that Character of our nation is reflected by how we treat the rich and the privileged but by how we treat the poor, the disfavored, the condemned. Our system has taken more away from this innocent man that it has the power to give back. But I believe that if each of us could follow his lead, we could change the world for the better. If we could look at ourselves closely and honestly, I believe we would see that we all need justice, we all need mercy and, perhaps, we all need some measure of unmerited grace.”
In this topsy turvy world, I hope we can see conflicts through these eyes and offer each other hope and, maybe, some measure of unmerited grace.
I can’t find an official definition of #MetsMonday, so I’ll give you mine — “#MetsMonday exists to remind each of us that those of us with metastatic cancer need research and intervention in order to lead full and fulfilling lives.”
If you have a definition, I’d love to hear about it!
#MetsMonday is why I publish a blog post every Monday. I added Thursdays since I usually have more to say that one weekly post can contain, but Mondays remain important to me as a blogger who talks about Cancer quite a bit. Metastatic Cancer to be precise.
For this #MetsMonday, I have two requests of each of you, dear readers.
First of all, since today is my father’s 65th birthday, please wish him a Happy Birthday! He has donated his birthday to raising funds for the 305PinkPack, a local charity who assists women with breast cancer to continue living life through active treatment. Dad and I moderate a biweekly zoom support group with 305PinkPack for those of us living with metastatic caner and we’re loving it! Dad’s fundraiser can be accessed here.
Secondly, for those of you who enjoy my musings and my advocacy efforts, I’ve been nominated for some WEGO Health awards. WEGO and their annual awards are designed to empower and recognized those of us who focus our efforts on raising awareness and calling attention to and advocating for people with health conditions. Breast Cancer is well represented this year and there are many dear friends nominated for awards as well. If you have questions about who to endorse in what category, I’m happy to share the efforts of some very amazing people.
Today, I’m also humbly asking for your endorsement. If you enjoy my blog and support my endeavors, would you take a minute to click the thumbs up for me? Follow this link to endorse me.
For all of you who took a moment to fulfill my requests, a million thanks! For all of you who faithfully read my posts week after week, a hundred million thanks! Blogging can be a rather solitary endeavor (my favorite kind) and I love reading the comments and hearing how my offerings have affected each of you.
Palliative care has to be one of the most misunderstood elements of care that I’ve encountered. I count myself amongst the people who knew next to nothing about it before I was diagnosed with a terminal illness. I’d always lumped palliative care in with hospice, frankly, and I’ve discovered that many other people think the same way.
Palliative care is NOT the same as hospice and I believe it is extremely important for the public to understand this.
I really like the World Health Organization’s (WHO’s) definition of Palliative care:
Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
* provides relief from pain and other distressing symptoms;
* affirms life and regards dying as a normal process;
* intends neither to hasten or postpone death;
* integrates the psychological and spiritual aspects of patient care;
* offers a support system to help patients live as actively as possible until death;
* offers a support system to help the family cope during the patients illness and in their own bereavement;
* uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated;
* will enhance quality of life, and may also positively influence the course of illness;
* is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
Sounds lovely, right? To have a team or even just one doctor totally focused on quality of life of the patient, fully committed to looking at the whole system around the patient and the whole life of the patient, and helping patients and their families understand the illness and each treatment, is amazing. I’ve had a palliative care doctor since I moved to Miami and those are my favorite appointments to attend.
Yet, I’ve learned that my experience is not the norm. Early on in my cancer experience, I learned of a fellow terminal patient who was refused palliative care at a large cancer center because she was terminal. Their definition of palliative care did not include someone who would be in treatment for life.
Since this literally flies in the face of all definitions I’ve seen of palliative care, it really surprised me. Doing further research and discussing palliative care with others has shown me quite clearly that the misunderstandings of palliative care is widespread. Many patients in rural areas have no palliative doctors anywhere near them. Many patients are in systems where a palliative care doc could help, but the only palliative docs are outside that health care system, which doesn’t work as well.
In the course of assisting with the Living Beyond Breast Cancer (LBBC) Metastatic Conference recently, I was able to “meet” virtually an amazing palliative care physician, Dr. Brooke Worster, who is the Medical Director of Palliative Care Services at Thomas Jefferson University Hospitals in Philadelphia. Her program, information about which can be accessed here, approaches each patient from a team perspective, focusing on meeting the needs of the whole patient and that patient’s family. I’ve connected my palliative care doc to Dr. Worster and I’m hopeful that will create even more discussions and interactions for the good of all patients.
Dr. Worster is participating in a new project headed by a friend of mine, Marianne Sarcich, entitled Advocating for Palliative Care. The concept and focus is to identify the barriers to every seriously ill person being offered palliative care, to create a model of providing said care (this is where Dr. Worster comes in) and then bring that model to those who need the information. We are still in the phase of discussing barriers and attracting the best stakeholders to effectively advocate.
If you are interested, contact Marianne and/or join the conversation. Bringing palliative care to those who need it the most is absolutely a worthy endeavor.
What does it mean to leave a legacy? How does this change with a diagnosis of Stage IV Metastatic Breast Cancer (MBC)?
I’ve been pondering these questions for most of the last three (3) years I’ve been living with Stage IV MBC and I don’t know that I have THE answers; at the same time, I have a few more answers than I did when I was diagnosed. My go-to is writing since that’s a comfort level of mine and it helps me process my feelings now, but I know that to leave a full and robust legacy for my young children, that my voice, my face, who I am is more than just what I write down.
A few years ago, I completed a legacy video through Thru My Eyes, a non-profit physically located in NY. It was a good experience overall, with a mental health professional asking questions and the flexibility of doing the video remotely. The video I have is something that my husband can share with my children after I’m gone. The video is me answering a variety of questions about who I am, what I’ve done with my life, and my family history/legacy.
Now that I’m further into my experience with cancer, I’ve been looking for some other things to do, not just for me, but also to capture the lives of those in the MBC community who have left us too soon. Grief has been such a huge part of the MBC experience for me and I know that grief can be difficult in so many ways for so many, especially since those of us in MBC community are often cut off from the familiar grief rituals, resulting in disenfranchised grief.
So, to address this need, I have partnered with a dear friend of my family, Rob Lamp, to bring the possibility of creating legacy videos at a reduced cost to the Stage IV MBC community. I’ve included the information below–Rob used some of the video and my pictures to demonstrate a portion of what he can do and his YouTube channel has a lot of options to view. Check it out!
If these prices still seem daunting, please feel free to get in touch with me to discuss fundraising options. Everyone has a story to tell and documenting that story is more important than ever when there is a serious illness or we are cut off from those we love. This project may take some time and it could be difficult at times when you are thinking about someone viewing a video after you are gone. I get it, I really do. I’m here to answer questions or anyone can feel free to contact Rob directly. He’s dealt with two different cancer diagnoses in his life and he gets it.
Black women are often diagnosed at later stages when treatments are limited, costly and the prognosis is poor;
Black women are often diagnosed at younger ages and have more aggressive breast cancer;
Black women make up only 6% of clinical trial participants.
Take the #InclusionPledge:
“WE PLEDGE TO ONLY PARTICIPATE IN INITIATIVES – ADVOCACY PANELS, ADVISORY BOARDS, PLANNING COMMITTEES, PROGRAMS, THAT INCLUDE THE EXPERIENCE OF AFRICAN AMERICAN WOMEN.”
Overview: A person’s life should not be determined by the color of their skin, literacy, financial barriers, access, social, systemic, and hereditary backgrounds should not be determinants of life and health equity. Particularly, as we face historical upheaval due to recent racial events, and as patients are impacted by COVID and post-COVID pandemic repercussions, this will cause a critical impact on health disparities for black women within the cancer research and cancer care ecosystem. In order to continue to accelerate impact as it relates to ending disparities for black women, the inclusion pledge is imperative.
Mission: To advocate and activate the inclusion of women of color across initiatives impacting their breast and overall health.
Background: At the 2019 San Antonio Breast Cancer Symposium, several advocates made an #inclusionpledge. The inclusion pledge originated with Angela “Jersi” Baker, (an African metastatic breast cancer advocate and Founder of Angel in Disguise), Julia Maues and Christine Hodgdon. Julia and Christine felt that as “white women living with metastatic breast cancer, [we] engage in advocacy to allow people with cancer to live longer and better lives. In this role, we get our voices heard by writing articles, speaking on panels, participating in advisory boards, or reviewing grants. We have always seen ourselves as allies to people of color and thought it was unacceptable that certain population groups experience disparities in cancer outcomes. But we decided that ‘not being ok’ with something this terrible wasn’t enough! We had to act.” And, so began the #inclusionpledge.
At Tigerlily Foundation’s SABCS Fireside Chat, the #inclusionpledge was announced and everyone in the room was invited to commit to the pledge. Maimah Karmo of Tigerlily Foundation, Jasmine Souers, and Marissa Thomas from For the Breast of Us, joined Christine and Julia on a panel to make this pledge. Maimah, Jasmine and Maurisa are all early-stage breast cancer survivors who always include the metastatic experience as part of their education and advocacy work. This pledge further empowers women of color, who often feel dismissed and not given a “seat at the table”. Jersi continues to use her voice to make an impact. At Theresa’s Research Foundation conference, Jersi was sitting in an audience where women of color and inclusion were being discussed, yet there was not a woman of color who was included as a patient advocate on the panel. Christine and Julia agreed that it was unacceptable and asked her to join them on the stage. This work, our collective voices, stance on disparities, diversity, and inclusion is unwavering. All stakeholders have to commit to change, to ensure women of color achieve health equity. We have to collaborate to effect change.”
In order to take the Inclusion Pledge with me, navigate here. If we all band together, we can effect change together. Our black brothers and sisters deserve it!
Some of you may remember the posts I’ve written about how I often feel dehumanized at the hands of the American Healthcare System. Looking back, I realize that I’ve long felt this way, but since my interaction with doctors and visits to the doctor were so few and far between, it became somewhat expected. Now that I am a professional patient and interface nearly daily with some part of the healthcare system, the affect has become much more pronounced.
As I raged against something that happened recently, my very wise father sat me down and suggested that I look a little deeper. Yes, I was beyond pissed that I’d done my job as a patient 100% correctly, coaching the people I was interfacing with on how to do their job along the way, and then. at literally the last second, ended up having to do parts of their job for them when they failed and nearly didn’t get the scan I needed; but there was something else under that.
Anger is often my go to emotion (who am I kidding, it’s nearly always my go to emotion) because it is often effective for me as an articulate white woman and, as many people have shared with me, I get very scary when I’m angry and this accomplishes what I need. I have been trained to break down and literally shred a person’s confidence in their words/testimony without yelling, without cursing, without name calling, with a hyper focus on the details that rivals many, even with chemo brain. I don’t pull this skill out very often, but it’s in my arsenal and it’s extremely effective. There’s a very good reason that people who encounter lawyers or experience being cross-examined are not happy about it. I’ve been on the receiving end of it and it’s not fun.
But underneath that anger and aggressive cross examination lurks a darker and much more complex emotion, that of feeling powerless or helpless.
Here’s a few examples:
I am an expert on my own body. When I am told how to feel or my symptoms or feelings are dismissed, it devalues me as a human being and it makes me doubt myself. When my treatment often depends on me noticing and interpreting symptoms for my doctors to evaluate, this could literally set me back in my treatment, cause me to lose function or time, including and up to death. The stakes are too high for me to doubt what I feel or even my intuition, something I struggle with already.
I have four (4) degrees, two (2) of them graduate degrees, and have run several very successful for profit and non profits, including my own, during my career. I’ve always looked younger than I am and it’s worse now that I’ve switched to very low maintenance habits like not wearing makeup and comfortable clothing. When a minimum wage front desk employee begins to argue with me about something they know nothing about, it sends me into the stratosphere. I confess I’m not good at handling that.
From a very young age, I’ve had a strong sense of justice, of right and wrong. That sense of justice was built up and strengthened during my years in law school and as a practicing attorney. A large part of the time I spent while practicing was advocating on behalf of foster care children and navigating the issues presented by many governmental agencies like Social Security and Medicaid. When I am confronted with inequities, with inefficiencies, with incompetence, with people who are lying to cover up their mistakes, intentional or otherwise, it offends me in my soul and I don’t stop until I am assured that they will be held accountable. Just in case you are wondering, if someone does a great job, I also don’t stop until I get them some accolades and I’m known to provide presents regularly to people who show me kindness. The one thing I typically am is consistent.
When I, a terminal patient, am looking to other people I don’t know to do their jobs so that I stay alive, it puts me into a position of needing something from people who either don’t or can’t take the time to get to know me as a person. Seeking help to literally stay alive from a system that treats me like a number contributes in a major way to the powerlessness that I feel daily and that only exacerbates my hair trigger when something goes wrong.
I have to take a moment and acknowledge that many men and women in the black or other minority populations are treated far worse than I and are dealing with even more of this feeling of powerlessness and helplessness much more broadly. I can’t imagine how I would feel if I had even more hurdles to overcome and much of the truth telling in the world today has driven this home to me even more. As much as I struggle with being heard and my pain or feelings discounted, there are many many stories that are far worse. I am acutely aware that I need to use my white privilege to help everyone’s access improve and I promise that I keep that in mind as much as I can.
In light of everything that’s happened, I’ve been working on identifying these emotions and acknowledging them before I go nuclear, before I begin ripping people to shreds, before I start dismantling each person in front of me. Once I sit with that emotion for too long, I’m frankly transported to an awfully dark place. The affect of feeling powerless and helpless for too long has a profound affect on the human psyche.
I don’t like that feeling, AT ALL. I’ll do a whole lot to avoid feeling that way, nearly anything, in fact.
Once I am able to calm down, experience the feelings as they are without the cover of anger, I begin to think about what I could do about it. As I’ve often said, I’m a do-er, nothing makes me feel better than doing something about a situation, even if it’s just filing a complaint or filling out a survey. Anger, frankly, while it helps get a reaction or an answer in the moment, does not often lead to a durable solution and people rarely want to deal with someone who is angry and taking it out on whoever happens to be handy.
A little while ago, I decided that I would try to be part of the solution and I found the highest person in the organization at my cancer center’s parent organization and I scheduled a meeting with him. I’ve been blessed with a connected family and the temerity to call the Chairman of the Board directly to ask for a meeting. He met with me, he took me seriously and he accepted my five (5) page spreadsheet of issues and recommendations.
I realize what I’ve done is not for everyone, so here is a list of practical things that every single person and every single patient can do to turn your powerlessness into action, into a solution:
Fill out the comment cards. Nearly every doctor’s office and cancer center I’ve seen has a way to comment. Fill them out. Use names. Use details. These can usually be anonymous, which helps a lot when you are concerned about how a complaint will affect your care. You won’t always know what they do with the cards, but if you don’t fill them out, then they don’t have anything.
Fill out ALL the surveys. I get a survey after nearly every appointment. I’ve always filled every single one out. My cancer center also does an annual survey. Out of the thousands who get treatment there, only around 100 people fill it out every year. WHAT?!?!? You can fill this one out anonymously too although I put my name on all of them. It’s simple, it takes just a few minutes and it gives valuable information to the people who need it.
When something happens, tell the supervisor. The supervisors need to hear about the good, the bad and the ugly. Again, use names, use details, report contemporaneously when the issue is fresh. This doesn’t have to be in person, emails work just as well and then they have it in writing. The point is, speak up in some way.
Find out if your cancer center has a patient advocacy office. My cancer center has one and I’ve gotten very familiar with the director. She can’t always fix things, but she’s in meetings with the leadership, so she can bring up issues, especially when there is a pattern. One note of caution here: there is a stigma to using the advocacy office since no one really likes to be called to the curb by someone who isn’t in their department. I do advise using this option sparingly since usually letters go in people’s files when this department gets involved.
Follow Up. Now, I typically insist on a follow up call within 24-48 hours and require details on who and when so I can hold them accountable. I’ve found that if you just make the complaint or report an issue or even fill out a survey, that information can get lost in the shuffle unless there is a specific need that requires immediate intervention. If you follow up, ask what happened, ask what will be changed in the future, ask even how you might be part of the solution, you will get noticed and maybe, just maybe someone will pay attention.
When I can, I really do try to figure out solutions to the issues, especially when I see patterns. I’m usually pretty good at noticing patterns and my experience running offices and working with various types of software gives me insight sometimes. Further than that, I ask questions. I ask about the EMR (Electronic Medical Record) and which department can see what, which department is responsible for what. I build a timeline in my notebooks with people and dates and details because I can never keep it all straight in my head. It helps me to figure out which person to talk to, which team is responsible, which person dropped the ball. This effort, while often satisfying to me personally, takes a tremendous amount of time and effort. I don’t recommend anyone do it often because it drives home that we patients are a commodity, a way of earning money, and efficiencies are often about money, not patient care.
What I do know is that me speaking up has identified issues in the EMR and in the organization of my cancer center that the leadership wasn’t acutely aware of. What I do know is that me insisting on details and accountability makes it harder to ignore the problems. What I do know is that I can communicate these things to executives and people higher up in the organization in such a way that is much harder to ignore. What I do know is that by me being the squeaky wheel, maybe someone else won’t have to.
What I also do know is that I will do a whole heck of a lot to not feel powerless, to not feel helpless; at the end of the day, though, I am. I have no control, I have no personal way to effect this system that takes away my humanity and profits off of my suffering. And all I have to say about that, is its fucking awful. Don’t forget to honor these feelings and to share with your team as much as possible what they do right and where they need to improve.
I’ve written before about the Fear of Missing out or “FOMO” as it pertains to parenting and the limitations of MBC that affects my ability to actively and physically participate in life with my children. Thanks to COVID-19 and the pandemic, we’re definitely drowning in family time right now. At the same time, the lack of traveling and interacting with others in the metastatic community has affected me in a different way.
When I was diagnosed with Stage IV metastatic breast cancer in 2017, my doctor told me that the average life expectancy I could expect was 2-3 years. In an instant, my life irrevocably changed and we have had to make decisions based on a timeline that was really really hard to get used to. I think the biggest change we made is that we don’t put anything off. We make plans to live life and then we do it. In the last two (2) years or so, I also dove into the metastatic community, engaging with other patients and traveling regularly to conferences. The friends I’ve made and the experiences I’ve had have truly been priceless, even through the regular deaths of precious souls taken way before their time.
Then COVID-19 happened.
For those of us whose life expectancy has been cruelly truncated by Metastatic Breast Cancer (MBC), the prohibition on traveling and gathering has eliminated some of the most important methods of maximizing the time we have left and has limited our ability to gather with friends whom we may never see again. Others who have more time in their lives to take a cruise or a vacation or just to be with family and friends will be able to do these things for years after the quarantining has ended.
When I travel to a conference or meet up with other friends who have MBC, we are acutely aware that the time we have with that person may be the last time we see them alive except for electronic communication. I can think of at least a dozen people who I hugged for the last time at a conference and then watched online while they declined and died before I could see them again. It’s one of those parts of the MBC experience that is hard to explain at times. Definitely something that healthy people don’t think about.
I’m sure the MBC community is not the only community who is feeling disproportionally affected and those perspectives are certainly valid. I think we will see the affects on the world for a long time, especially and particularly in mental health. The feeling of missing out and never being able to replace this time we’ve lost is weighing on me and I’ve heard others express something similar.
And so, what to do? How to remedy this?
I’ve found a few things that are helping me feel more connected to my community even when I can’t physically be with them.
Writing letters. I used to exchange letters with my grandmothers regularly through college and law school. Getting back to the thoughtful and careful exchange of thoughts has been very worthwhile for me. A friend of mine set up a pen pal program too and that’s been fun. Plus I got to buy pretty stationary!!
Electronic Learning Opportunities. I participated in the very first online course when I was in law school, I got my Master’s degree almost entirely online and I’ve been doing Continuing Legal Education (CLE) classes online for quite a while. All of that did not prepare me for having to do EVERYTHING online and I can’t say I’m a huge fan; at the same time, I’ve had the opportunity to help with the transition of certain conferences from in person to electronic. Applying creativity and careful planning/thought to the transition has occupied time and energy and that has helped.
Expansion of Support Group Activities. I’m involved in local support groups as well as online support groups. In each of the groups I’m participating in, we have expanded the connection opportunities, including zoom and other q&a interactions. While not perfect, I think we are all learning the value of digital communication in a new way.
Continue Making Plans. We may not be able to book a plane ticket or a resort or a conference right now, but we can still virtually travel to coveted destinations and plan for when the pandemic ends and traveling is available again.
Make the Most of the Time we Have. Sometimes I think this is one of the most precious silver linings of a terminal diagnosis. I’m nearly always thinking in terms of now being all I have. Each holiday feels as though it will likely be my last. The benefit of this is that I’ve learned to make the most of now, the most of what we have right in front of us.
While I’d written most of this a few weeks ago, I would remiss if I did not add that we just completed the Living Beyond Breast Cancer 2020 Metastatic Breast Cancer conference entirely virtually. There were so many opportunities to connect, to chat, to see one another on the screen and it was more than lovely. As some people said, no lines to the bathroom is a major plus! Also, no traveling and worries about luggage and traveling with medication, etc.
And yet, as wonderful as it was and as amazing a job as all the staff and volunteers did, it was still a huge bummer not to see everyone in person. Some of us got together for an impromptu happy hour at the end, but it was still not enough.
It wasn’t enough. Our community is built on the community we create together. This is missing out.
What else? Tell me, what have you learned about making the most of now?