Until relatively recently, I had no idea what a podcast was. Literally. When people talked about hosting or speaking on a podcast, I probably had quite the quizzical look on my fact. I don’t remember when I finally figured it out. It probably had something to do with my dear Emily Garnett’s podcast, The Intersection of Cancer and Life, which I listened to avidly. Her podcast was the first time I was a guest on a podcast and it’s still my favorite ever. You can listen to our discussion here from November of 2018, which was recorded a year before we actually met in Washington DC in October of 2019, right before her diagnosis of leptomeningeal metastases.
Emily and I right after the METup Die-in In front of the Capitol Building
And now, I find that I love podcasts. The unique voices of different hosts and their guests are incredible and I follow quite a few of them, listening to each new episode as soon as it drops. The only drawback right now is that I’m not driving as much as I used to because of COVID, so I’ve had to find other times that I can do something with my hands while listening. I find cross-stitching or other crafts are uniquely suited for this — I can’t sit still long enough to listen to an entire episode.
Recently, a new podcast launched, titled Our MBC Life. This effort is underwritten by SHARE Cancer Support, a non-profit focused on supporting patients with breast and ovarian cancer. The effort of Our MBC Life is to highlight the advocacy and efforts of patients with Metastatic Breast Cancer (MBC) and is hosted by patients with MBC.
What a powerful example of the often repeated refrain in the MBC Community:
“Nothing for us without us.”
I was honored to participated in one of the early episodes recorded by Our MBC Life to highlight and honor my dear Emily Garnett, her life, her advocacy and her legacy. The discussion was between myself, the host, Lisa Laudico, and Emily’s widower, Christian Garnett. Christian has taken it upon himself to grieve openly for Emily, to keep her legacy front and center, and to continue her projects in the way that she would have wanted.
You can access our discussion about Emily, grieving, and legacy here.
Our MBC Life did an amazing job of spreading the word with their unique graphics!
Lisa Laudico also recently shared a conversation she had with Emily prior to her death that no one else had heard until recently. Listen here for that conversation.
I am also extremely excited about participating in a live podcast TONIGHT with my friend, Alyson Tischler, who is living with metastatic triple negative breast cancer, and Laura Carfang, a survivor and the energy behind SurvivingBreastCancer.org!! Here’s the link to register for the discussion: Registration. We will talk about a new medication approved by the FDA specifically for those who are metastatic triple negative (mTNBC) and then a whole lot of other initiatives, including Alyson and my current project, MBC Grieving Together.
We hope you can join us and learn more about the MBC community and the needs of this unique group of men and women learning to live while dying.
This picture was taken at the San Antonio Breast Cancer Symposium in December of 2019!
Today marks twelve (12) years since the joyous day when Elliot Johnston and I said our wedding vows to each other. Life looks so very different now from what we envisioned twelve (12) years ago and sometimes it’s hard to believe that so much time has passed!
Please indulge my trip down memory lane in celebration of this milestone …
Elliot and I were married in the sanctuary at the First United Methodist Church of Downtown Orlando. We didn’t color code our wedding colors with the flag behind the alter, but it worked out quite well! Our church had a restriction on photographers, so our photographer had to take pictures from the balcony at the back of the sanctuary. When you get a shot like this, you know that the photographer is an artist.
Yes, I’m the absolute shortest person in my family. Nothing is as clear as a picture like this to see just how much shorter! Yes, I’m the eldest of 6 and all of my siblings are in this picture.
Elliot’s Dad has been in a nursing home since 2005 and it was a challenge to get him physically to the wedding; at the same time, you can see how happy he is to be there and to be celebrating the wedding of his son.
Elliot doesn’t have as many siblings as I do, but each one of them made the effort to come to the wedding.
After the beautiful ceremony and before the reception, Elliot and I paused to take some pictures.
Just a quick re-enactment of the kiss to seal our vows!
It wasn’t super easy to surprise Elliot since he was part and parcel of all the wedding preparations, but the one surprise I was able to pull off was the horse drawn carriage ride for the few blocks between the Church and the site of our reception, the Ballroom at Church Street Station. Yes, it was hot on August 9, 2008, but the breeze helped!
You can’t see the cake topper at the this angle, but I was able to get our initials in sparkly rhinestones to top our delicious cake perfectly. The red rose petals were also scattered across each table with a gorgeous candle centerpiece on top of mirrors to extend the twinkling and flickering lights of the candles as the sun set.
Just a quick break to scarf down a few bites of food in the middle of glad handing and dancing and drinking!
The day after our wedding, we drove to Cape Canaveral and got on our first cruise with Royal Caribbean. That started our tradition of cruising for each anniversary, which we recently reprised with a Disney cruise with the boys over Spring Break in 2018. Cruising suits our personalities perfectly where we have the choice of many different options to socialize, participate in activities, see new countries, have new experiences, and yet have a room to retreat to whenever we need alone time. Plus, the added bonus of cutting us off from social media and electronics for a time.
Elliot and I recently ventured out for a socially distanced dinner at The Melting Pot, one of our favorite restaurants, for his birthday and Father’s Day. We often forget to take pictures of the two of us, so we made sure to document the event, especially since it’s been so many months since we’ve ventured outside the house to eat!
Neither of us look the same as we did twelve (12) years ago and so much has happened in that time. The things that haven’t changed are the foundations we build our life and marriage on — love, respect, loyalty, commitment — thanking God for that strong foundation that has weathered so much.
Here’s to the next twelve (12) years, may they be much less interesting and eventful.
My anniversary present to Elliot this year is a pictorial representation of the words and concepts that define who we are and what ties us together. Check out Melanie’s work, you’ll be happy you did! She handles most of her communication via Instagram and she also has an Etsy shop!
On a recent Zoom support group call, there was a discussion about different scans, why they are different, and why different doctors will order different scans under different scenarios. A further part of the discussion was how insurance companies impact the likelihood of a scan or test being covered or the cost of a scan in a different location costing a different amount. These issues are something that many cancer patients face regularly and can feel incomprehensible at times. Fortunately, we had a medical professional in the group, who broke down some of the details from her experience, which was SUPER helpful for the attendees. This blog post is my attempt to gather the information available in one place to help everyone understand the different tests.
As always, if you have a medical question, please ask your doctor. This post is my attempt to explain the medical jargon from my perspective only and I’m not a medical professional of any kind!
“Magnetic resonance imaging (MRI) is a medical imaging technique that uses a magnetic field and computer-generated radio waves to create detailed images of the organs and tissues in your body.” I got this definition from the Mayo Clinic’s page about MRIs, which can be accessed here. Sometimes insurance companies want an MRI to be done prior to paying for a PET scan and it’s important to understand that an MRI does give detailed “slices” in pictorial form of the organ or bone that is looked at. For instance, I’ve had multiple brain MRIs since a PET doesn’t always show a brain lesion clearly — I don’t have any brain lesions, just lots of migraines that cause my doc to want to look at my brain pretty regularly. Additionally, when I’ve had a new lesion show up or something that continues to be active from PET to PET, then an MRI is often scheduled to get a closer, more detailed look at what’s really going on.
A Positron Emission Tomography (PET) is one of the most often ordered scans for Metastatic Breast Cancer (MBC) and my Medical Oncologist calls it the “gold standard” in staging and identifying progression. This Healthline article gives a great overall description of what it is and why it is done. A good thing to remember is if you have Lobular Breast Cancer, differentiated from Invasive Ductal Carcinoma, the PET may not be the best scan for your doctor to determine if there has been progression. For further information, check out the Lobular Breast Cancer Alliance. One other limitation of a PET Scan is that the SUV value (meaning how bright is the metabolic activity in a particular site) is subjective. This can impact how different scans are read and continuity between scans. Just something to consider when discussing the results with your doctor. Further, for those of us with bone mets, it’s important to remember that active cancer and healing bone is nearly indistinguishable on a PET and requires a radiologist who really knows what they are looking at.
Computed tomography (CT) scan is when detailed images of internal organs are obtained by this type of sophisticated X-ray device. I’m not sure anyone has forgotten the taste of the chalky substances that we have to drink before this scan. My cancer center has a few different options with different “tastes,” but all of them are pretty nasty to me. I had a PET/CT at a free standing clinic the other day and they didn’t have the chalky stuff, the tech just mixed iodine in water and said it did the same thing. Since the iodine water was much easier to keep down, I may just schedule further tests there. This article provides more information about CT Scans and why they are used to look at organs because of the limitations of X-rays.
X-rays are a type of radiation called electromagnetic waves and is usually one of the only words beginning with X that my prek kiddo remembers! X-rays are used to look at bones, but are limited in efficacy for looking at soft tissue. An article explaining the details of X-rays and when they are used can be accessed here.
“A bone scan is a nuclear imaging test that helps diagnose and track several types of bone disease. Your doctor may order a bone scan if you have unexplained skeletal pain, a bone infection or a bone injury that can’t be seen on a standard X-ray.” The was the best definition I found and, no surprise, it was from the Mayo Clinic’s website. There are experts that opine for those of us with bone only mets that the PET scans are not the best method of measuring progression or activity since healing bone shows up at metabolically active on a PET and often cannot be differentiated from active cancer. My Medical Oncologist still likes the PET best, but we also do some bone scans as well.
So, the next time your doctor is thinking about which test to use to look at a particular issue or pain or to continue to surveil the efficacy of a particular medication, you will know what to ask and have some framework to understand what the doctor is looking for. I’m a big believer in understanding what and why a doctor is doing even if the doctor doesn’t articulate that right away. This information may help you ask the right questions or just give you peace of mind you understand why your doctor is doing what they are doing.
Again, I’m not a medical professional, so if you have specific questions, please make sure you ask your medical team!
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.
I’ve rather jealously guarded my platform on this blog and have eschewed opportunities to share a guest post for a while. But when a dear friend and I were talking about jealousy the other day, I knew I had to make an adjustment. She just articulated the issue so very well and we had such a kismet meeting of the minds that I knew instantly how important it would be to share her words. I’ve dealt with the same or similar emotions at various points throughout the time I’ve been living with Metastatic Breast Cancer (MBC) and I’m pretty sure others have as well.
Without further ado, here’s Silke’s words about Jealousy:
It’s been a great day of skiing. A little careful, because I don’t want to bust the expanders, but I’m happy that we delayed the reconstruction until after the end of ski season. I’m under the shower, warming up. My thoughts wander to my mortality. I have cancer. It’s still hard to grasp. What will happen after I die? My man will be miserable alone, but he should be able to find somebody else. I want him to be happy. He can take her up here, go skiing with her. Then she’ll sleep in my bed. She’ll take a shower in my shower. The shower that we built together. In the house we built together. And with that I unravel into a crying mess on the floor of the shower.
Fast forward a good 6 years. I received my metastatic diagnosis last year. Like six years ago he stood by me. Tried to get me out of my anxiety attacks. Told me that we won’t let that destroy what’s left of our lives together. Planned all these trips. None of that happened because of Covid-19, of course, but that’s an entirely different story. This story is about jealousy.
A few years back I read “When Breath Becomes Air”. What astonished me the most was that he wanted his wife to remarry. Not just “yeah I want her to be happy”, but a wholehearted endorsement of her future happy life with a new partner. It made me think a lot about partnerships and expectations and what happens when one leaves so much earlier than the other. Both my grandmothers died long before I was born, and both my grandfathers moved on. One of them because he had lost a leg during the war, and needed somebody to care for him, so he married his wife’s cousin.
In the middle of this metastatic mess, I talked about being suicidal with my man. When I told him that it’ll likely get really bad, he said that he didn’t marry me just for the good times, but that it was for good and bad times, and that he’d be there for me. And I think that was when the last bit of jealousy of any potential new loves left me.
I’m still jealous. I’m jealous of those who don’t have to swallow handfuls of pills every day. I’m jealous of those who will be able to live out their lives. I’m jealous of those who will never learn the meaning of scanxiety. I’m jealous of those who will just keel over and die, and not go through the long agony of living while dying, with ever-worsening side effects. But I’m not jealous of his future partners anymore. I want him to have the life that we wanted to have together, to get old with somebody who loves him, even when he’s unshaven and has a hangover because the wine just tasted too good the night before. I want him to be happy, because he is doing his best to make me happy right now. Please let me overcome the jealousy of others as well. It’ll be hard, and I hope I can do it. Because it’s not their fault.
Thank you, Silke, for your honesty and vulnerability and courage in sharing these personal ruminations. I’ll pass along your comments to her, so please let Silke know how much you appreciated her post.
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: sonya@metavivor.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’ve been watching a lot more of the news in the last few months than I ever have before. Watching, reading, keeping up on goings on, etc. I think a lot of us have been doing this since there is so much going on in the world that affects each of us personally. I’ve been more and more astonished at the rhetoric coming from the White House and other elected leaders as the pandemic rages nearly unchecked through the United States. For the first time, my US passport is not an advantage as most countries close their borders to us. For the first time to my knowledge, every ICU in Florida is nearing capacity.
My conclusion?
There are people in this country who believe I am expendable and I don’t know what to do with that.
For the very first time in my life, everything about who I am as a person appears to be no longer relevant, the economy and opening up the country is more important than my safety and my life. To add insult to injury, according to every list and instruction I’ve seen, I will be one of the first to not be given a ventilator when they are scare. The actions and statements of so many people, especially those in leadership confirm that the economy, getting people back to work, and returning to “normal” is more important than my life and those in the Stage IV Metastatic Breast Cancer (MBC) community, along with elderly, disabled, and other medically vulnerable people.
What am I to do with this?
Prior to being diagnosed with MBC, I was a solidly productive member of society. I was under 40, I was married, I had my own business, I had two children, I was a homeowner, etc., in short, I was employing other people, paying taxes, and working. Now, I’m living on disability, both private and SSDI, along with my husband’s income as a banker. Our family as a whole does still pay taxes, we are still homeowners, and I am still using my education in a productive way.
Except.
I’m immunocompromised and likely would be more susceptible to getting a bad case of COVID-19 than another 41 year old woman without an underlying health condition. Every explanation of how ventilators and supplies would be rationed puts me in the category of being the first to be denied treatment in favor of younger, more healthy people.
This freaks me out.
Like really freaks me out.
I realize that with the precautions we are taking and continuing to take, the likelihood of my being infected and hospitalized is as low as humanly possible. However, I’ve already been tested for COVID (I was negative and it was just precautionary because I had a bit of a leftover cough from a cold) and I’ve already been hospitalized for side effects of my cancer treatment during the pandemic. I didn’t spend more than one night in the hospital, but it was surreal and concerning for all the reasons that are bandied about in the news — mismatched PPE, a general sense of anxiety, medical professionals avoiding talking to me in person because they were treating me as if I had COVID, and limited space. That was in March, when Florida was not reeling with so many cases. It’s much much worse now.
So much worse now with all the ICUs in Florida reaching capacity and the medical system very close to being overwhelmed. I haven’t heard of any cities in Florida requesting the refrigerated trucks from FEMA to store the overflow of dead bodies the way that cities in Texas have had to recently, but I suspect that’s coming too.
How do I wrap my head around the fact that people I’ve never met, people elected to lead our country, believe that my life isn’t worth enough to save?
How I do I wrap my head around the fact that people in this country are more concerned about their “rights” than wearing a mask to help protect me and other vulnerable people?
Having never been in this position before, I have no frame of reference to think about and understand this bombshell. I am not usually an anxious person and even though the sky has fallen in my life more than once during this cancer experience, I have been blessed with a good support system, talented doctors and the time/funds to find solutions for most of the issues I’ve encountered. Plus, I’m just stubborn. None of that will keep me safe now.
I don’t have any answers for this. This is scary. This is demoralizing. #ThisiMBC
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 love the blog challenges that Nancy’s Point runs each year! It’s such a fun time to get to know other bloggers, in this cancer space and otherwise. Before I go any farther, please take a moment to follow Nancy’s Point. She talks about so many things, cancer related and otherwise, and everyone should be following her. 😉
2020 Blog Challenge Questions
Who are you? Tell us whatever you want about you and your blog.
I’m a daughter, a sister, a wife, a mother, and a lawyer living with Stage IV Metastatic Breast Cancer. Advocacy is a way of life for me and cancer advocacy is now my focus. In the beginning of my experience with cancer, I started sharing information on Caring Bridge as a way to keep my family and friends and community up to date. When I knew I wanted to share my voice more widely, I set up this platform as more of a traditional blog, which I’m now expanding a little to include other resources, including linking to other bloggers, listing my favorite remedies for side effects, and highlighting the projects I’m championing. Writing is how I make sense of my feelings and sharing that cathartic process with others has created so many opportunities for connection with others that I would miss otherwise.
I named my blog NoHalfMeasures because I never do anything halfway. I mean that literally. If I’ve decided something is worth my time, then I’m all in. ALL IN. It’s how I know how to do life and I know that my persistence and passion can often be … misunderstood. As I learn more about myself, I’m more accepting of myself and my idiosyncrasies. I’m thankful for the people in my life who see my heart and my intentions and are not put off by my intensity. Because I am intense and rather uncompromising about those those things I deem to be important.
2. What has been your biggest blogging challenge during this pandemic, and how have you been tackling it (or trying to)?
My biggest “problem” during this pandemic is having too many things I want to write about. Not just the pandemic or the racial issues but all of the disparities that are now top of mind for so many in the cancer community and beyond. I’ve started writing for other blogs just to be able to get all of my thoughts out, which is a way of coping/tackling this issue, I suppose.
Being at home with the kiddos has meant that I don’t have as much down time as I used to when they would be gone at school or camp from 8 to 3. We’ve had to get a little more creative about child care and everyone I’ve zoomed with has been treated to two (2) jumping active little boys in the background, but the family time has been precious and I wouldn’t miss it.
3. What is something you’ve accomplished with your blog that you’re most proud of?
The number of people who contact me nearly daily about how something I’ve written that resonates with them just blows me away and that’s a huge accomplishment in my view. Some of these people are perfect strangers, others are people I’ve known for years or represented as a lawyer. While being vulnerable is pretty hard for me (I know, that’s probably not very apparent from my writing), it’s always good to hear that my efforts resonate with others.
The ability to be vulnerable through my writing has often been a bit daunting for me as I’ve worked at my blog for the last year+, but I think that over time, I’ve found the best way for me of sharing what I’m dealing with and how I make sense of it. It’s not going to be everyone’s cup of tea and I’m learning to be ok with that too.
4. Share two of your best blogging tips.
First, stay in your lane. Write about what you know. The genuineness of your knowledge of a subject matter really matters and it’s pretty apparent when someone strays into something that isn’t in their wheelhouse. I think one of the saddest things I hear from people is that they want to start a blog, but they aren’t sure they have anything to say. We all have something to share with the world! We all have a unique voice and perspective. The important thing is to start.
Second, respond to every comment and comment on other blogs. Blogging can be such a solitary endeavor but engaging with your readers and other blogs creates and perpetuates the conversation. I’ve found so many amazing people outside of the cancer community who also blog and those connections have changed me in ways I’m not always aware of. Each person I connect with virtually becomes part of my story, of my experience, and that’s priceless.
5. What is one of your blogging goals this year?
To get back to my intention of writing a substantive piece once a week and a book review once a week. I’ve just had too much to say recently!! I’ve a backlog of books I’ve read or will read to write book reviews, including the books by Nancy and I do want to get to that.
6. When things get hard, what keeps you blogging, even if not regularly?
I always have a bunch of drafts halfway done or otherwise started as well as some that just need to be polished in reserve. In fact, right now, I have 17 drafts and 12 blogs scheduled. This wasn’t what I started out with but over time since I don’t always know how I will feel one day to the next, I’ve found that this method ensures that I have something to publish even when I’m not feeling well. The only drawback to this method is that the blogs aren’t always as relevant when they are published versus when I wrote it. I’m trying to figure out how to account for that. If anyone has suggestions, I’m all ears!!
7. What is a dream you have for your blog? Share a link to a favorite post you’ve written that you want more people to read.
I would love to see my blog syndicated on a larger platform to be able to reach a wider audience. A local support group, Your Bosom Buddies, has included a link on their page already and I’m excited to partner with them to increase their ability to assist those of us in the metastatic community! One of my projects is to train patient mentors through Your Bosom Buddies so that each person at my cancer center diagnosed with Stage IV metastatic breast cancer has a patient mentor from day 1. COVID has delayed the start of that, but I know from personal experience how important it is to have someone in your corner to help you navigating this cancer having thing. It’s also known to decrease the burden on the medical professionals and reduce hospitalizations, a win for everyone.
Ok, I’m sure some of you would like to know why I included a post on grief, something not easy to handle. I chose this blog post because it was a post that just came out of me almost as if I HAD to write it. The entire post literally poured out of me in about 10 minutes and I didn’t edit a word. Each word is heartfelt and genuine and it helped me be more vulnerable than I’d ever been able to be before.
The grief we experience in the metastatic community on a daily basis (116 men and women die each day in the US of Stage IV Metastatic Breast Cancer (MBC)) has become a topic that I’m particularly focused on and a dear friend and I have set out to do something about it. If any of you have suggestions with regard to our project, please see the blog I wrote on Disenfranchised Grief, and please get in touch! 🙂
Thank you, again, Nancy for seeing up this annual challenge for all you do for the MBC community! 🙂
If you have experienced betrayal trauma, you know how isolating and distressing it can be. We want to offer support so you feel less alone, and more able to cope with the chaos and the pain.
