Disenfranchised Grief

I was struggling recently over the anniversaries of the death of several members of the Stage IV Metastatic Breast Cancer (MBC) community and a dear friend, Alyson, shared with me her working knowledge of this concept of “Disenfranchised Grief.” Alyson Tischler is a fellow MBC haver and is just generally a really cool person. She’s also writing for AdvancedBreastCancer.net with me and you can read her profile and articles here.

I’d never heard of the term “disenfranchised grief,” but as soon as I started reading about it, so much that I’ve been struggling with made so much sense. I included a link above to a great discussion about this concept, but my own definition is as follows:

Sometimes the relationship you have with a person virtually or in a particular context means that you aren’t a part of that person’s life as a whole. If that person dies, the traditional grief rituals that would help with processing that grief are often unavailable. When this happens, there is no outlet for the grief and the grieving person is left with a gnawing sense of loss without a tangible way to express it.”

I vividly recall the death of my original sister buddy, Kari Rousch, and how I felt so awkward with her family. My grief was real and it was significant to me; yet, I didn’t know them well enough to clearly articulate what I was feeling and I ended up feeling like a voyeur or a crasher in the midst of their grief. When they eventually decided to take Kari’s Facebook page down, I was left bereft of even that link with her. It would have been entirely inappropriate of me to say something about this to them–she didn’t belong to me, she belonged to them. Yet, I felt bereft and I didn’t know what to do about that.

I’ve endured the loss of other friends, dear friends, and most recently, the death of my best MBC friend, Emily Garnett. I wrote a post about that loss as well, titled Grief and Love, Love and Grief. Even with the time I’ve had and the experiences I have under my belt, this disenfranchised grief stuff is HARD.

Back to my discussion with Alyson about disenfranchised grief … we started talking about the need for individual rituals and also larger rituals for the MBC community as a whole. As we brainstormed, I started getting more excited about the concept. So, we gathered some advocates together in a FB messenger chat to further discuss ideas and to continue to refine the original concept. We’ve been kicking around a lot of details and ideas together. Alyson and I spoke with Kelly Groslags this week to get her input too.

We have pretty high aspirations and have lots and lots of ideas about grief rituals and how best to help each person in and connected to the MBC community deal with and work through their grief.

What I need from you, dear readers, is your ideas. We want to have multiple levels of this project, from the in person nationally, to locally, to virtual resources and places to memorialize all the dear men and women we lose at the rate of 116 people per day in the US. Please tell me!!

#MetsMonday

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.

Happy #MetsMonday!

Celebrations

I’ve been thinking a lot recently about celebrations. Milestones and the traditional ways of marking said milestones have changed in this time of COVID. The “normal” or expected elements of the 4th of July are simply … missing. I don’t miss the traffic and fighting for a place to sit comfortably and watch the fireworks; at the same time, there is a strange connection that is formed when a large crowd of people are focused on the same thing.

As a child, when we lived in Maryland, we drove into Washington, DC several times to watch Red, White & Boom. I have vivid memories of tuning the radio to make sure we could listen to the music sync’d up with the fireworks. I don’t have vivid memories of the traffic there and back, thankfully. As a young adult, when I was in law school, the 4th of July celebrations were over the top in Norfolk, Virginia in light of all the service people and their families who lived there.

Now, as an adult with children during a pandemic, the crowds and the fireworks and other activities have taken on yet another aura of anxiety. We will be celebrating as a family at a safe distance in a quiet corner of Florida that isn’t experiencing a crazy spike.

Even amidst the craziness of the pandemic and all the fear and anxiety and safety measures, we’ve been talking to the boys about the meaning of the 4th of July. Yes, it’s full of music and loud fireworks, etc., but it’s also about a successful rebellion against tyranny and the hope of a fledgling nation trying to do better.

May we all try to do better as we enjoy the freedoms and the benefits of the struggles of those who have gone before us.

Happy Independence Day!! 🙂

Palliative Care Project

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.

Palliative care:

* 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.

https://www.who.int/cancer/palliative/definition/en/

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.

Legacy Project

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!

WONDERFUL LIFE VIDEO will interview you and/or family members online, from the comforts of your home plus edit your photos, home movies and your favorite music into a mini-documentary Legacy Video to share online. WATCH LEGACY VIDEOS
Complete Storyteller Package
Filming: Up to 8 hours of online interviewing up to 4 people capturing their memories and perspective of their loved one.  
Editing: Includes up to 100 animated family photo and family video professionally edited with titles and their favorite songs. Approximate length 30-45 minutes.
Cost: $1200 (Reg. $1800)*
WATCH BENGFORT FAMILY VIDEO
Basic Storyteller Package
Filming: Up to 4 hours online interviewing the primary person capturing their memories from childhood to adult, life values and legacy messages.

Editing: Includes up to 50 animated family photos, professionally edited with titles and their favorite songs. Approximate length 15-20 minutes.
Cost: $600 (Reg. $900)*
WATCH ABIGAIL’S ONE MINUTE DEMO
CONTACT ROB LAMP FOR A FREE CONSULTATION 
ROBLAMP@GMAIL.COM
407-729-5267

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.

Reviews

I’ve written a bit lately about some popular or maybe not so popular TV shows and movies that I’ve been able to binge on during the pandemic and quarantine. I, as many do, have those guilty pleasures we don’t talk about all the time and one of mine is watching HBO’s Sex and the City. The show came out in 1998, when I was in college, and ran for six (6) seasons and then I think there was a movie or two that came afterwards.

Outside of the overt sexuality depicted in the show, which was shocking then and not so much now, one of my most vivid memories of the time period when it was running on HBO was when one of my sisters and I watched it together at my parent’s house when we were both home from school, my sister from college and me from law school, I think, or maybe it was even later. Going to and working in NYC was her dream, which she made happen once she graduated, and watching that show allowed us to talk in a way we struggled to otherwise. I’m not saying that she had a promiscuous lifestyle, I believe the draw for her was all about the style and the “thing” that makes NYC so unique, however that is defined by Manhattanites. I watched it to catch a glimpse of the life she was leading there, whether or not it was entirely accurate.

As I watched the often comically presented struggles amongst the four (4) women that the show follows, I am sometimes horrified, sometimes intrigued, sometimes envious, sometimes irritated and sometimes just entertained. Occasionally, there are some more profound moments that are easy to overlook amongst the clothes and shoes and restaurants and red carpet events.

The quote that resonated with me recently was when Carrie Bradshaw (played by Sarah Jessica Parker) in Season 5, Episode 6, concluded that

“The only reviews that matter are the ones you give yourself.”

I think this is something that many people aspire to, especially when said reviews are about a part of you released to the world. In the show, Carrie writes a column all about her dating and sexual adventures. She speaks to the perennially single women in the City who often despair of finding the great love of a man. Her column is successful because she is vulnerable and shares details of her life and experiences (and the experiences of her friends) in great detail. She does, though, tend to have either strong admirers or strong detractors, a phenomenon that is not unusual when one pushes the envelope on what most people are comfortable talking about.

In 2020, there are so many bloggers who share their vulnerable selves in a variety of ways through the internet. No longer are columns limited to the few that are published in a paper newspaper. Anyone who wants to pay the money to host a site and is willing to enter content is welcome to do so. No editor looks over these posts, no review board, no one is worried about selling something … well, I suppose that last one isn’t always true. Many blogs have sponsors and many bloggers work to monetize their work. It’s just very different now that anyone can create content without the benefit of a guide/editor.

And yet, this quote remains true. How we think of ourselves, how we think of our own actions, how we review our efforts, those are the reviews that truly count in the end and the more we can seek that approval internally rather than externally, the happier we will all be.

Thanks, Carrie, for the insight. 🙂

Father’s Day, 2020

Father’s Day is celebrated in the United States on the third Sunday in June and was started in the early 1900s in various areas of the US, mostly by children who sought to honor their single fathers and make sure that both Father’s and Mother’s have a special day just for them. While Mother’s Day was officially celebrated first, Father’s Day was not long behind for formal recognition and was soon expanded to acknowledge all of the men serving as father figures for people not their biological children.

Both my Dad and my husband have birthdays close to Father’s Day; in fact, for my husband’s very first Father’s Day in 2013, his birthday was the same day as Father’s Day and our eldest’s baptism. And yet, the struggles I’ve always had with my birthday being so close to Christmas don’t seem to translate as much to the men in our family. Maybe because both Father’s Day and Mother’s Day is still mostly about the kiddos and their celebration of fathers, maybe because they are both much more mature than I am. Maybe it’s because there is pressure on men to be the strong, silent types, to deal with their emotions in private. Whatever it is, Father’s Day is an excellent excuse to roast these important men in my life.

First, my Dad, Thomas Richard Schroeder, JR., LMHC:

My Dad has always occupied a larger than life role in my life. I am the eldest in our family and my name means “A Father’s Source of Joy.” While my dad and I have clashed over virtually everything in life at one point or another, our relationship has largely been marked with respect, loyalty, and a huge dash of honesty. Our personalities are similar in many ways yet vastly different in others. Some of the most fun I’ve ever had with my dad was when we were trained to do collaborative divorces together and we worked with families together. Our approaches were different, but complimentary. Dad doesn’t get as much acknowledgment in our family for what he brings, which is a whole lot of foundational strength, commitment, loyalty, and love. He has taken what he was given and made our lives better than what he had and he’s done it without being asked for as long as he’s been a husband and a father. Despite whatever is going on in each of our lives, we all know that Dad will answer the phone to brainstorm and discuss potential solutions and then make them happen when he can.

During my bridal photoshoot before my wedding in 2008.
Wedding on August 9, 2008

When I was diagnosed with Stage IV Metastatic Breast Cancer, my dad was the first one to suggest that we consider moving to Miami to live with him and my mother. In 2017, I’d been living away from home for nearly twenty-five (25) years and moving home with a husband, two children, a cat, and decades of accumulated belongings is a much bigger deal than other times in my life. And yet, despite the upheaval and changes and obliteration of their retirement plans, my parents made room for us, literally and figuratively. And more than that, my parents have taken on my causes as their own. Dad and I moderate a support group for patients with Stage IV metastatic breast cancer every other Monday and he’s recently donated his 65th birthday to raise funds for a local non-profit, the 305PinkPack. If you are interested in joining his efforts, you can donate here.

That larger than life man I’ve been looking up to my whole life, turns out he’s a pretty cool guy to know as a person too. Despite all the challenges we’ve faced as a family with my diagnosis and life, I am grateful that part of the adjustments we’ve made is to be closer to my dad and have the opportunity to see and know each other in a different way. One thing you learn very quickly being terminal is not to let time go by without saying what you feel to those in your life.

So, Dad, thank you; thank you for being you; for giving selflessly of yourself day in and day out; for getting up every day to go to work; for continuing to work on yourself and admit your blind spots; for worrying about each of us all the time; and for being there every single time we’ve needed something even before we know to ask. You are seen, you are loved and you are appreciated, each and every day.

Happy Father’s Day, Dad, today and every day. 🙂

Disney Cruise for Spring Break in 2018.

And now, for my husband, Elliot Lawson Johnston:

When I met Elliot in 2006, having children was a far off twinkle in his eye. Despite the fact that he would have been fine to immediately begin having children when we got married in 2008, I was more reticent. Once we thought we might be ready and started to try to have children, things didn’t go as planned. We discussed all the options, prioritized our research, and tackled fertility treatments together.

And that’s really the way we tackle life, together. When I had to give myself shots and take hormonal medication and go to appointments daily at various points in my fertility cycle as part of the medical interventions, Elliot was there every step of the way. He was the first to celebrate with me as the treatments worked, twice, and he was the first to hold both of our boys after the C-sections that brought them into the world. Elliot put up with my insistence on trying a VBAC for our second son and didn’t chastise me, much, for not always making the best decisions as I struggled to figure out how pregnancy and motherhood fit into our lives.

One of the most beautiful things about being a parent is watching other people fall in love with your children. Just because Elliot didn’t carry our boys inside his body for 9 (nine) months doesn’t mean he wasn’t falling in love just as I was. He helped me physically during my pregnancy and rubbed my stinky feet nightly for months. As soon as our boys were born, he jumped right in, changing the first diapers for both of them and continuing to be part of everything, even as breastfeeding took over our house and my time.

Mere days after L was born, Elliot with our first born.
Getting in some snuggles with L on his baptism, which was also Elliot’s 40th birthday and his first Father’s Day!
We knew a little more with #2 and had a newborn photoshoot at home a few days after M was born. Elliot jumped into fatherhood for the second time with both feet!
The dreaded tummy time was better on Daddy’s chest for M!

Watching Elliot grow and learn as a father and a husband over the past year has been one of the best experiences of our marriage for me. Life is so very different now, from COVID to progressions, and working from home and watching school happen in the same room with varying amounts of success. Elliot has shown us over and over that he is committed and loyal to his family. Elliot has demonstrated in so many ways that he can be trusted, that he is a foundational part of our family, and he follows through when he says he will. Beyond that steadying hand, Elliot is also much better than I at diffusing a situation with a joke, a smile, a tickle, or just a hug when someone needs it the most. The boys are beyond blessed to have Elliot as their role model on how to be a black man, a husband, a hard worker, a nurturing masculine man, a steady and consistent provider, and a father they can respect, emulate, have fun with, and follow.

Couldn’t imagine life without you, my love. Happy Father’s Day!!

Dinner at our favorite social distancing restaurant, The Melting Pot, to celebrate both Elliot’s birthday and Father’s Day, 2020!

Powerlessness

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.

My husband has a birthday today!

Elliot is a few years older than I am and we joke that he’s the old man in each group we find ourselves in. He’s been a good sport about that. We were both pretty settled in our careers when we got married and have not had the experience of growing up together as much as others who met earlier in life. I think that’s given us a different perspective. We are the older parents and likely will not be young grandparents.

What Elliot has taught me more than anyone else I’ve been in a relationship with is to look first to our small family and what is best for us, and then to the wider world. I often get caught up in the way that things should be and work to shape the world in that way. Elliot reminds me that we only have control over what we do, where we spend our time, how we apply our internal values, how we decide to parent our boys.

Elliot has shown me with the boys that being a parent is about establishing the rules, yes, but it’s also about affection and hugs and kisses and cuddles and love. He’s super good at disarming a child who is upset with a joke, a hug, or a compliment.

Elliot has shown me with his life that I can rely on what he says, he lives his life as he says he will.

Elliot has shown me that when he makes a promise, a commitment, like the covenants we spoke to each other at our wedding on August 9, 2008, that I can trust him to follow through, even if that means moving hours away from his comfort zone to live with his in-laws.

Elliot has shown me that when he says he will take care of our finances and watch out for our family financially, I can rely on that regardless of what is going on in the world. I’m not super excited about following the stock market and watching our investments bounce around, but he is and takes this so seriously.

Elliot has shown me that commitment and love means to sacrifice what you might want yourself, for the good of the family.

Elliot has enriched my life beyond that which I could have imagined and I am so grateful and so blessed to be doing life and love and parenting with him.

Happy Birthday, my love!

Abigail

Missing Out

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.

  1. 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!!
  2. 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.
  3. 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.
  4. 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.
  5. 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?