Living Out Loud with Metastatic Breast Cancer
Wildfire Magazine
Cancer diagnosis story and updates: https://itsabouttimemets.com/mets-stories/abigail1
AdvancedBreastCancer.net
https://advancedbreastcancer.net/living/scars-seen-and-unseen/
https://advancedbreastcancer.net/living/coping-metastatic-diagnosis/
https://advancedbreastcancer.net/living/coping-cancer-related-fatigue/
https://advancedbreastcancer.net/living/functional-allopathic-medicine/
May, 2019 is the third Mother’s Day I will celebrate with cancer. It’s only the second Mother’s Day I will celebrate since knowing that I was de novo metastatic (meaning from the beginning) since it took a few months to figure that out after the initial bombshell in March, 2017.
Every holiday since cancer, especially metastatic breast cancer, takes on a new significance. Every time, I can’t help but wonder whether this is the last of whatever holiday it is that I will celebrate. Every time, I go a little more overboard in celebrating just in case it really is the last time. Every time, I have to consciously look away from the storm clouds gathering overhead, especially when a scan or other treatment is coming up.
As a daughter, I hope the celebrations and gifts for my mom have gotten better over the years. My mom is pretty forgiving and accepting of our efforts over the years, even the misguided ones. It makes my heart smile a little seeing how she has kept a variety of the trinkets and projects I made over the years for her. One of our most memorable mother’s days, for me, was driving together (just my mom and me) from Virginia to Florida after I graduated from law school. Being one of six means that we all rarely got our mother’s undivided attention. Her attention was and is priceless and coveted. Being the eldest means I still have 18 months of her undivided attention more than any of my siblings.
A few mother’s days stick out for me since becoming a mother myself. My first Mother’s Day as a new mom in 2013 when j finally got to celebrate as a mom. My first as a mother of two when we came home from the hospital on Mother’s Day in 2015 and I tandem nursed my boys for the first time, marveling at how HUGE my 2 year old eldest looked compared to his newborn brother. The very first gift I received on Mother’s Day that my son made for me at school, which I display proudly on my piano to this day. Since Mother’s Day happens during the school year, there are usually celebrations and trinkets and fun activities with the kiddos.
Each of these celebrations were and are a salve to the wound of watching other women celebrate Mother’s Day when I ached to hold a child in my arms. Each of these celebrations remind me how lucky I am to have an amazing role model in my own mom.
The older I get, the closer I get to the end of my life, the more I treasure time. Time to be with those that I love. Time to celebrate milestones and time to impart important lessons I’ve learned.
This Mother’s Day and every day, I am reminded to be grateful for the mothering I’ve received, grateful to be gifted the opportunity to be a mother to my boys and the awe-Inspiring responsibility it is to be a mother. I’m also reminded of those mother’s days when I longed to be a mom and my heart hurts for those families that feel incomplete.
Today, and every day, thank those people in your life who show love, who nurture without thoughts of reciprocation and who make life and love beautiful. Those people don’t have to be moms, dads are pretty good at nurturing too, as are Aunts and Grandmas and people who give freely of themselves. After all, Mother’s Day is just a made up holiday anyway. 😉
Ever since I knew that I have a terminal illness, I’ve been much more intentional about creating lasting memories with my boys. They are currently five (5) and three (3), so I am quite well aware that their actual memories of me may not be all that vivid if my life expectancy follows the median of those with my disease (2-3 years is the median life expectancy). One of the major ways I make sure that I will be visible in my boys’ memories is to take a lot of pictures.
Life isn’t perfect and I am often not happy about the way that I look in the pictures. That used to mean that I didn’t post pictures or even take them and when I did, I’d carefully ensure that only the best were displayed. Now, I take pictures all the time and I post and share pictures quite a bit. I’m not at all narcissistic, I am intentionally making a record of the time that I have with my boys for them, for their future. They will be able to look back and see all of the times we’ve had together.
When my dear friend, Jennifer Pace, posted information about an up and coming non-profit that schedules photo sessions for those of us with metastatic breast cancer, I jumped at the opportunity. The photo session was nothing less than amazing and the pictures that came out of it are priceless.
I’ll post more on Facebook and all of the pictures, but I’ve tagged one of my favorites in this blog post. Check out Joe Leone Photography and like 13th Hour on social media. Joe and his sweet wife are traveling around Florida capturing poignant memories that cannot be replaced.
I’m frankly appalled at the news these days. I get that much of what I read and see comes through the lens of the particular bias of whatever news outlet I’m utilizing, so I do my best to read the source materials, the laws, bills, etc. However, I am seeing some really scary trends these days that affect me directly.
First, let me detail my own biases. I’m a white woman. I was born at the end of Generation X in the late 1970s. I was raised in an evangelical Christian home as the eldest of 6 children and I was homeschooled until high school. While we did move a great deal when I was a kid, I identify as being raised in the Midwest. My parents were born in Ohio, I was born in Ohio and I went to high school there. I’m also a registered Republican as are my parents. Later in life, I married a dark skinned naturalized US citizen from Jamaica who is a registered Democrat. I am an attorney. I have spent most of my career working in and volunteering for the foster care system in Florida.
I’m not sure what category I belong in now but the older I get the more moderate politically I become. No, I’ve not given up my Republican registration but I do tend to vote for a mix of candidates now and focus more on issues than party lines; and I’m frankly pretty disillusioned when it comes to our system of government.
Given those biases, here is what I think about some key issues …
Patented Genes: I learned recently that an enterprising company actually patented the BRCA genes some time ago. This patent then made it more difficult to do research or really, more expensive. I suppose this is capitalism at its best. Well, the idea of patenting a persons genes was litigated and I believe the court made the right decision when it concluded that no one can patent something occurring naturally. This seems to be a basic principle that wouldn’t need to be litigated, but those are the times we live in. It will be interesting to see how this precedent is applied and I understand that there are some bills pending that will make it clear what can or can’t happen in the future.
Hands off my genes!
Abortion: I believe that life begins at conception. I believe that the baby formed when the sperm hits that egg is a precious life deserving of protection. HOWEVER, I’ve also seen first hand what happens when a baby is born to a family who is not prepared to take care of that baby.
Notice I didn’t say woman. That’s important. The men who impregnate women should be just as much on the hook for all that comes with parenthood. The larger families surrounding the biological parents also need to see themselves as part of the solution.
I personally believe the current “pro life” movement in the United States is primarily “pro birth” because, in my experience, all of those people who are comfortable picketing Planned Parenthood disappear when it’s time to help support a family who is not ready for a baby and when a child enters the foster care system because the biological family can’t or won’t raise the child, they are also notably absent. Until the pro life movement understands that they must deal with all consequences of a forced birth, I’m not on board with their methods. We cannot abandon the people most effected by a pregnancy, many of whom are still children themselves, and still call ourselves pro life.
Again, I believe that abortion is literally ending a life before it begins and I fervently believe that life is precious. I’ve talked with women who have had to make impossible choices. I’ve counseled women on all their options. I’ve been present at adoptions. I’m not speaking from an ivory tower, I’ve been in the trenches.
Yet, as a woman, I’m not ok with anyone telling me what I must do or not do with my body. I have not had to make an agonizing choice about what to do with a precious baby so I can’t relate to that; at the same time, I am 100% on board to support other women in their fight to keep other people, primarily men, from making decisions for all of us.
Hands off my body and the bodies of other women. It’s just plain wrong for anyone to tell another person what to do with their bodies, especially when the people primarily interested in doing the telling don’t have the same parts.
Pre-existing conditions: I read recently some statements from a politician in Alabama who said something like that he believed people who “live right” don’t have pre-existing conditions. I’m sure he had a few select pre-existing conditions in mind when he made that idiotic statement. That, however, frames this discussion in a way that makes it obvious how people who have not been touched by illness view those of us who are ill. It is my opinion that this sort of statement is akin to white privilege. People who haven’t experienced what happens when illness changes you and your family are prone to making ill advised and tone deaf statements. Just like white people continue to make statements about the experiences of minorities that are awful.
Before the Affordable Care Act (ACA) was enacted, I remember reading insurance policies that defined pregnancy as a pre-existing condition and exclude a pregnancy that occurred within 12 months of the inception of the policy. I thought then and I think now that that is a terrible thing to do. Now I have a pre-existing condition for which I endure daily treatment.
I’m not claiming to have led a perfect life, but I also don’t accept that I am responsible for having cancer or that I caused my cancer. I have a genetic condition that I didn’t know about until after I was diagnosed and I’m in the minority since most women with breast cancer have no clear reason for it. Lung cancer is even more clear — many people with lung cancer have never smoked.
Patient shaming and attempting to marginalize those of us with pre-existing conditions to simply die is the definition of morally bankrupt. Hands off my insurance coverage.
Right to die/Medical Aid in Dying (MAiD): I get that this is a really sticky subject and before I was diagnosed with a terminal illness, I’m not sure if I could have articulated a clear position. Now, I think about what a good death looks like a lot and I live with a lot of chronic pain that sometimes is so bad that I’ve longed for it to end, however that is accomplished.
Until one lives with chronic pain, it is hard to understand why a person might choose not to continue living. Until one experiences allegedly life saving medication that literally makes one want to die, it is hard to understand why someone might choose not to take it. Until one has to think about choosing between bankrupting everyone around one in every way (energy, money, time, etc.), it is hard to understand how one might embrace death.
I read a Twitter feed recently where a doctor (with full permission from a patient), detailed the decision making and the process of implementing a decision not just to end treatment but to bring death artificially. This process was patient centered, patient driven and patient supportive. The patient was able to spend time with and joyfully end her time on earth on her terms so that she passed peacefully, while still aware of what was going on and with the support of her loved ones.
Was her choice morally right? I believe that to opine about another’s choice without being in their shoes demonstrates a decided lack of empathy. How can anyone know if her choice was right outside of the patient? While I do think that there are some moral bright lines, this is one that cannot be imposed. No person should be able to dictate to another what any person decides to do in partnership with his/her doctor.
Hands off my medical decisions. Hands off my body. Hands off my genes. Hands off my life. Hands off my death.
My dear friend, Emily Garnett, had the author of Breakthrough: Immunotherapy and the Race to Cure Cancer, Charles Graeber, on her podcast earlier this year and if you aren’t already listening to her podcast, The Intersection of Cancer and Life, you should start immediately. 😉. It’s available through the podcast application on my iPhone and I wait anxiously to listen to each new episode. Anyway, I’m super interested in Immunotherapy since it seems to have some promise for the treatment of cancer and I immediately purchased his books while listening to the podcast. Yes, his previous book, The Good Nurse, is insanely well written as well.
A pretty important question is why our immune system does not recognize and kill cancer cells like it does the common cold. Scientists have been baffled by this question for a very long time and they still don’t fully know. In this book, the author utilizes records and real life anecdotal and other evidence to trace the key players and the perception of Immunotherapy from the early 1900s to present.
The pictures, information and evidence the author gathered is then weaved together into an easy to read and follow narrative. At some points, it’s almost easy to forget that the book is non-fiction! In hindsight, it is clear to see the progression of research and how scientists looking at different parts of the puzzle come to differing conclusions or how the research in one lab built off the research in another lab or overlapped, etc. In the throes of the research, scientists often didn’t know what they knew or didn’t know. Trials were designed using the wrong criteria. Patients who never expected to live were thriving and finding out that fact was sometimes accidental.
Sometimes, as a patient, it is troubling to be shown clearly, logically and irrefutably that doctors and scientists are people too. They get tunnel vision. They are affected by the opinions of the establishment. They miss connections. They ask a million wrong questions before they ask the right one.
😳
Yes, it’s not a good thing to be reminded of how all people are fallible.
Yet, it’s also a good thing to see that even if something is debunked; even if the established thinkers/leaders think an idea is bunk, the truth will out.
There were sufficient scientists and a drug company or two willing to invest some money into the idea and Thank God they did. Immunotherapy is looking more and more viable the more each part of the equation is studied. The breakthroughs in targeted therapy over the last decade or so has certainly helped.
Bottom line, there is no cure for cancer yet. At the same time, Immunotherapy and other hot topics are the ones to watch as we get closer and closer.
Pick up Breakthrough: Immunotherapy and the Race to Cure Cancer on Amazon or at your favorite bookstore. You won’t be sorry! It’s riveting.
In my last post, I talked about a recent encounter we’ve had with racism where we live. That experience is not over and I’m plotting a few lawsuits as I type this; however, I’ve been struggling with something related to this experience that I want to share.
Let me first say that I trust my husband to keep my children safe. He’s had more than 4 decades of experience with racism and how to deal with it in corporate America as a banker. He understands and gets so much that I overlook.
However
As a mom, I cannot help but look at this situation and be terrified for the future. Terrified that my brown skinned boys will find themselves in even worse situations when I’m not around, when I can’t use my legal knowledge and love for them to protect them.
Isn’t that what every parent wants to be able to do? Protect their children?
The need to protect my children from racism is more than just name calling or looks or exclusion, it’s the need to protect them from literally losing their lives. When I hear stories about children fired upon or killed or beaten or otherwise abused just for being black or mixed or simply “other,” my reaction is extremely visceral. I see my boys in the faces of the murdered children. I see myself and my husband as the grieving parents.
I have no tolerance for people breaking the law and we are teaching our children about the rules, about the law, about how to conduct themselves. They will, of course, fail in some way. They will do something monumentally impulsive and won’t be thinking of the consequences. As we all did as young people.
And I won’t be there for that. Because breast cancer will kill me.
So, while I can, I am going to fight racism. I am going to look for the best way to punish those who are ugly to and around my family. I am going to take every opportunity to show my children how things can be handled. That people have to speak up. That we can’t be silent. We can’t walk away. We can’t allow bullies to thrive.
But I won’t be around forever and my kids will encounter racism in a variety of ways in their lifetime.
I know my husband and my family will do their best to protect my kids.
At the same time, I have a request of every person reading these words. The only way the way black people are treated will change is if everyone speaks up. Everyone changes. Everyone says no, this will not stand. Everyone says to the bullies and the racists, we don’t do things that way.
Will you speak up? Will you be a part of changing how black people are treated?
I am asking because my mixed race brown boys need a world that treats them with respect and I won’t be able to protect them.
March of 2017, ring bearers in my brother’s wedding right after my diagnosis.
2018, ring bearers in my sister’s wedding, January of 2018
2018-2019, beginning and end of school pictures.
I vividly remember the day we met at the Panera in Waterford Lakes. I was so nervous that I think I talked the entire first date and I don’t remember all of the likely nonsense that I spewed the entire time. Yet, you overlooked that as you overlook so many things. You saw through the babbling idiot I was that night and I’m so thankful for that.
The last nearly 11 years of marriage and a few more of knowing you through being engaged and getting to know each other have been intense and fraught with challenges. At the same time, knowing that we each have a partner in handling job loss, infertility, buying, selling and renting houses, family challenges, children, surgeries, health issues, family health issues and all of the other awe inspiring experiences that have happened to us, can often make the difference between a breakdown and a breakthrough.
Just writing the list of all the things we have weathered in our relationship reminds me how lucky I am to have a real partner in all of that. I’ve never felt like I was facing any of our challenges alone. When we’ve needed to make changes, to adjust, to pivot, you are always in the thick of it, always joining me in whatever we have to do. Nothing can be a better example than your choice to leave Orlando with me and the boys and live with my parents after I was diagnosed. You put me and our marriage above yourself and your comfort, something you do naturally and regularly.
As I shared during my toast at Anna’s wedding, you showed me in the biggest and best way that you love me. Ours is not the love story of grand gestures and high peaks and correspondingly low valleys. Our love story is quiet, steady, consistent, loyal, true, trustworthy. Our love story is like us.
Two years ago on your birthday, we were living with my cancer diagnosis but did not yet know that I am terminal. This is the second birthday we’ve been together since we received the news that you will likely be a widower and our children motherless with it 2 to 3 years of my diagnosis. Despite the fact that we’ve both been struggling with this reality, you have put up with all of the things I’ve done and said in order to cope. You’ve given me the room to do what I need to do.
Know this, no matter what happens, no matter where we are tomorrow or 10 years from now, our love is forever. I will always love you and want the best for you, no matter where I am. I may not always show it, but you are pretty freaking good at this husband thing and even better at the father role to our two boys. Our boys, as well as I, know that you love them in visceral and tangible ways.
On this day of celebrating your entry into the world and every day, know that the boys and I love you, truly, madly, forever, bigger much (per M). We appreciate all that you are and everything you bring to our family.
xoxo
Abi
I know this blog is about my experiences as a woman living with Stage IV metastatic breast cancer, but I need to take a small break and talk about prejudice and racism.
As most of you know, I’m a WASP. I’m originally from the Midwest but I am a White Anglo Saxon Protestant. I’m married to a dark skinned naturalized citizen from Jamaica and our boys are a beautiful brown mix of the two of us.
Hey, I know I’m biased, but just look at how amazing they are!!
I’m still learning about how to deal with racism, whether overt or covert. News Flash, I’m not dealing very well with it. When my husband and my kids are treated differently, it boils my blood like nothing else. Nothing.
Recently, we’ve encountered an issue in our neighborhood. Specifically with the use of the tennis courts in our neighborhood. Ridiculous, right? How could tennis courts result in racism?
My children have been taking tennis lessons for nearly 2 years now from an amazing tennis coach that comes to our neighborhood. She is truly a gifted teacher and my boys love her. We share the time with several other families in our neighborhood. The coach is super nice, respectful, etc. She has never caused any problems and has never been late.
Fast forward to last weekend when an adult white man thought he should have the tennis court and my husband, children and our coach should leave. There are no rules in our neighborhood that would allow one resident to force another to leave a common area yet this man thought he could bully them because he wanted to play instead of the children. He pretended to serve the tennis ball into my husband’s face and kept yelling “Where are you from?” to my husband and our coach.
This happened in front of my boys.
They are 6 and 4.
They watched this horrible man belittle and be disrespectful to their father and coach.
My husband handled the situation beautifully, respectfully communicating that he would not be bullied or pushed around. He did leave the tennis court that day because the man was so awful and the boys were present and there is a second court. When my parents attempted to talk to the man, he calmed down. He apologized to my tall white father while ignoring my mother.
When we filed a formal complaint with the homeowners association and suggested remedies for the situation, we learned that this man is a known bully. He is a known racist. He is known to be extremely negative towards immigrants. He is known to use his whiteness and his height to intimidate others into giving him what he wants.
It is known.
And yet, his behavior doesn’t stop.
He has no idea what can of worms he just opened when he behaved this way towards my husband and my kids. If he needs to know where I’m from, I’m happy to tell him I arrived in Florida from Ohio by way of law school in Virginia. I suspect that’s not what he wanted to know.
It is 2019. The idea that any person is better than another because of their gender or skin color or height or nationality whatever is not only outdated, it is criminal. No one should tolerate this behavior and yet the lack of people standing up to bullies and racists and misogynists is astonishing.
The ONLY way for men like this to win and get what they want by being horrible is when the targets don’t back down and neither does the community.
You’ve been warned, you racists and misogynists, you don’t get to mess with my family without consequences.
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When my boys were placed in my arms after the planned (Liam in 2013) and emergency c-sections (Malcolm in 2015) my heart swelled and grew. I had no idea how much love I could have for someone I’d just met and yet, it happened both times. Ever since then, I’ve had the privilege of thinking about them before anything else and putting them before myself every day.
So, when I heard in March of 2017 that I had breast cancer in the midst of tandem nursing my boys, while I mourned at having to wean them abruptly, I knew that I had to in order to stay with them. When I heard in June of 2017 that I was actually Stage IV and my breast cancer had metastasized to all of my bones, my very first thought was that I wanted to be with them as long as possible. The years I’d had with them was suddenly not enough and every moment became fraught with meaning.
Since that fateful day in June, I’ve had almost two years to be with my Boys and work through so many emotions and fear and anticipation. Anticipation of all those days and experiences they will have without me. I watch my own mother help me with caring for them and my heart breaks for all that I will miss. When I can bear that thought again, I’ve tried to turn my attention towards pieces of me that I can leave behind for them.
This is my list thus far …
Each of these things I’ve listed above are how I am trying to prepare for leaving my Boys. I’m already experienced two thirds of the median survival time with them and while I hope for many more years, I also cannot help but prepare for the worst, that I only have another year or two with them. I don’t know precisely how to cram a lifetime of my presence with them into that time but I am working to make sure that my voice will be available to them in good times and in bad times.
The hardest thing about my diagnosis and knowing that I am terminal, is knowing that I will hurt my Boys in the most profound way a mother can ever hurt a child, by leaving them. My own memories only go back so far and there are days when I look at my 3 year old and wonder if he will remember me at all. If I dwell on that, it’s hard to do anything at all. By focusing on what I can do, now, I can keep working at what I can do to mitigate the loss.
I would be remiss if I end without mentioning my precious husband. He has uprooted his life and work and comfort zone to support me in what I want and need. His selflessness has allowed me to structure a new life that is supportive and helpful to me as I navigate our new normal. He is an amazing father and I know that he will do everything he can to make sure our boys grow up to be men and to make sure they don’t forget.
I cannot end this post without mentioning April Stearns and her wonderful magazine, Wildfire. She is an ally to us living with stage IV metastatic breast cancer and her publications highlights and celebrates the amazing men and women who have not allowed this disease to end what is special about them. Check her out!
