Everyone is different

I see it all the time and, at times, have done it myself, belittling and/or comparing the struggles of others. Especially when the struggles of others are specific to struggles you yourself have overcome. It is so easy to look back and gloss over the detailed bits, to forget the triggers, to urge too hard that people overlook things that weren’t so hard, in hindsight. And yet, true empathy is to work to put ourselves in the other person’s shoes as they are now, not as they could be.

Let me give an example.

I’ve never been too hung up on appearance. Comfort has always been a big deal for me and that usually trumped appearance, for me. It was after pregnancies that I finally, truly, embraced the body that I have, not the body I wanted. I kept fit by being active, to a certain extent, and threw away the scale.

When I learned that I would need chemo, I went out a bought a wig. The wig was astonishingly like my own hair and frankly if I wore it, people who knew me were hard pressed to know that’s what I was wearing. But I only wore it once.

We’re in Florida, you see, and the fact that the wig was hot was a bigger deal to me than revealing my bald head.

That’s me.

I’m pretty much comfortable with me and I don’t care much if I made people uncomfortable. I had quite a few kiddos ask to rub my head and lots of staring by adults. I just stared them down, just like I would make contact and stare people down who were uncomfortable with me nursing or pumping in public.

I get that not everyone is like me.

I get that for some people, seeing themselves in the mirror looking different can cause a ptsd reaction. I have ptsd about other things. Sounds, smells, pink ribbons. These things cause so much angst and upset that wouldn’t be readily apparent to others.

I know that many other people have experiences that they struggle to explain. I don’t usually spend any time attempting to explain or justify myself. I will often make a statement as to why something affects me differently and then move on.

However

I’ve recently learned that a dear friend of mine, while working through her own ptsd about how her hair looks so very different, was told (In different actual words) to suck it up by other women in a support group we’re both in. That, in different words, her hair was such a small thing in the broad scheme of things and she should not be so focused on the differences foisted upon her by chemo.

Different people grieve different things.

For those of us who are stage IV, some things aren’t as big of a deal. Learning that one’s life expectancy is significantly shortened does put a different context on literally everything.

But not everyone processes things the same way.

If I’d had early stage breast cancer, I may have been more focused on how my bald head made me feel or really short hair made my eyes look different or how my body didn’t feel the same. I experience these feelings on some level, it’s just that they don’t compare discernibly to being terminal.

That’s not everyone’s experience.

I don’t experience being told I can’t have more children than in the same way as someone who has never had children. I don’t experience issues with dating or when to tell someone about my diagnosis because my husband already knows literally everything.

You see? We’re all experiencing different parts of the elephant called a breast cancer diagnosis. We each have our own, unique context. Some of it will be the same, some different.

When we think we can tell someone else how to feel, how to manage the psychological aftermath of treatment, how to recover, we have stepped out of where we should be.

Tough love has its place and sometimes some people need a bigger prod to get out of a rut. I don’t think anyone has the ability to intervene unless they are family or super super close friends, who know the entire context.

Period.

Support groups are just that, there for support.

Let’s focus on that, supporting others, and leave the instructions or input to those who ask for it.

Anger and Depression

I was listening to a piece on NPR a few months ago about how Anger and Depression go together.  I’ve heard that a definition of depression is anger turned inward, so this link is not surprising to me.  As an introvert, I’m pretty familiar with the inward turning concept, that’s my normal modus operandi and I’ve a bit of a temper, so anger is not an unfamiliar concept, depression, though, that’s a new one.

I’m aware that there is still a stigma around mental illness, that anyone who relies on medication to manage their pain, mental or otherwise, is viewed differently.  I’ve also heard that cancer patients don’t often tell their medical providers how they are feeling, during or even after treatment.  There is huge pressure to be “fine,” to leave the experience of cancer behind once the active treatment is done.  That leaves so many men and women in a dark place without hope.

Fuck that.

Yep, I just used the “f” word.

I don’t curse often, but this is a subject that I feel rather strongly about.

I’ve been diagnosed with depression and anxiety and I’m taking medication for that since early on in my diagnosis, which occurred in mid-2017.  My normal coping mechanisms weren’t up to the task when I received a TERMINAL diagnosis and I still need help to manage my emotions.  I need help to get out of bed in the morning and I need help to deal with the bone deep anger I feel.  I need help to be able to be present for my children rather than wallowing in a deeply dark place.

My terminal illness is invisible at the moment, at least when I’m wearing regular clothes.  You can see about half of my scars when I wear a bathing suit.  The scars on my legs show where I was cut to accommodate the rods inside my femurs and the screws to hold said rods in place as well as some of the tattooed dots from radiation.  My bathing suits usually hide the scars on my belly from the robot assisted hysterectomy, the oncoplasty reduction where the cancer was removed from my breast, the rest of the tattooed dots from radiation and the two C-section scars.  These scars tell the story of some of the physical affects of my treatment, but they don’t tell the story of the mental and emotional affects.

It’s hard to put into words how difficult a terminal illness is on the psyche.  It’s hard to put into words the ambiguity of continuing to live life and deal with the minutiae of “real life” while dealing with constant pain and scans and the threat of progression and death at any moment.  It’s hard to put into words the affect of watching friends die every day.  It’s hard to put into words how dealing with medical professionals and my insurance company and all the stupidity of the medical system can be infuriatingly complicated.

I can handle most of this most days by compartmentalizing the hard stuff and focusing on what is in front of me.  I also take a good amount of medical marijuana.  Before anyone freaks out that I’m high while driving or taking care of my children, relax.  I am responsible about this.  I take CBD during the day and use THC at night to pleasantly float to sleep.

There are days when I can’t deal.  Literally, can’t.

I don’t feel shame at admitting that I need help, chemical and otherwise.  Seriously, no one is naturally equipped to deal with finding out that death is a heck of a lot closer than one originally thought.

I’ve become accustomed during my life to pushing the bad stuff to the back of my mind and making myself move forward, one step at a time.  I’m actually better at this than I thought; however, being diagnosed with a terminal illness has been a different experience for me.  I’ve had to learn new coping mechanisms and I’ve had to learn to give myself space.

I’m not good at self-care.

I’ve gotten better, but I’m still not very good at it.

Here is my list of the things I’ve utilized to help cope with living while I’m dying, in no particular order:

  1. Yoga.  The combination of physical exertion and the focus on mindfulness, breath, and being present has so many physical and mental health benefits.  If I don’t go to yoga regularly now, I really feel it.
  2. Sleep.  Sleep has really always been a core value of mine, but as a mother and a business owner, sleep started to take a back seat at times.  Now, I consider sleep as part of my medication regimen, it’s an integral part of my self care.
  3. Support.  I’ve dealt with a lot of stress over the years and, frankly, been around a lot of people who I didn’t like and didn’t particularly like me.  These things aren’t healthy, especially on a long term basis.  Now, I focus on being around people who are supportive of me and avoiding situations and people who are toxic.
  4. Medical Intervention.  I see my psychiatrist and pain management doctors regularly.  They help me evaluate where I’m at with my pain and how I’m doing overall, as objectively as possible.  I trust both of these doctors to notice and intervene when necessary.
  5. Family.  I spend a lot of time with people who think I’m amazing.  My family watches me closely and they are quick to notice when there is something bothering me.
  6. Medication.  When I learned I was Stage IV, I started taking anti-depressants.  I’ve taken a few different ones now and experimented with the dosages to get them right.  Right now, I’m taking medication that both helps with my mood and also the hot flashes resulting from my hysterectomy.
  7. Advocacy.  I’m a product of my German genetics and upbringing in the Midwest.  Being useful, helping others, and speaking up when I can makes me feel as though I’m utilizing my diagnosis to make a difference.

What is working right now for me is not what will always work and won’t necessarily work for others.  Perhaps this list and my description will at least spark a conversation for others.  Dealing with the weight of a terminal illness amongst the regular stresses of life cannot be discounted.  If you or anyone you love is suffering in silence, please speak up.  Help is available, but you have to ask for it.

Love and light.

The Bell

There have been some blog posts disseminated recently about the use of the bell to celebrate the end of treatment in infusion or radiation centers. The vitriol displayed by many has been a surprise to me. As with many elements of the experience in #CancerLand, so many people have strong opinions, yet it is the way that the angst gets personal is still surprising to me.

The divisions among those of us dealing with breast cancer is so sad to me. We are all dealing with breast cancer, it is an awful terrible no good experience. Yes, some people struggle in different ways. Yes, some of us are going to die of breast cancer. We will only accomplish more if we join our voices, join our resources and work together.

The bell has become one of those things that seems to divide the early stage and metastatic communities.

I first learned of the bell when we thought I was Stage II and my oncoytype score had come back high enough for me to need to do chemo. The binder about chemo that my first medical oncologist gave me had a brief paragraph about the bell. I was honestly focused on getting through treatment as quickly as possible and getting back to “normal” that I didn’t pay much attention. I don’t remember hearing the bell being rung during that first treatment of AC when we still thought I might get to ring the bell at some point.

After we’d learned I was actually Stage IV from the beginning and I heard the bell ring during chemo, I simply sobbed. The bell became representative of what I would never do, celebrate the end of treatment. I remember vaguely that a nurse suggested that I ring the bell on the last day of my AC treatment to my sister and she deflected that question carefully because we were all aware that the end of that particular chemo wasn’t the end of treatment.

I’ll never be done with some kind of treatment.

I might be done with various parts of treatment at times, but the end of a treatment usually signals that my cancer is growing, that I have to switch to another medication to handle the progression. Ending a particular treatment isn’t something to celebrate for those of us with metastatic disease, it is a warning, a reminder that Stage IV metastatic breast cancer is terminal.

Ending a treatment usually = progression

I honestly don’t begrudge anyone their parties, their celebrations for whatever reason. Ending a difficult time is worthy of a celebration. I know how hard chemo is. I remember how difficult radiation is and I had far less radiation than most. I get it, I do.

I think the issue is that those of us who are lifers don’t want it rubbed in our faces. We don’t want or need the visual reminder that we are different, that cancer will kill us. For us, the celebrations are usually smaller, quieter, not as ostentatious, not as visible. I think that’s partially because the checkups are more often, the scans more frequent and last longer. I think it’s also partially because we are shoring up our energy, our funds, our resilience for the next encounter.

We’re tired. Lifelong treatment is exhausting.

It is my opinion that some separation is a good thing. My infusion center is pretty big and I usually ask for a bed. The chairs, you see, are at the front. The beds are usually reserved for the sickest patient, the ones who come from a hospital bed. Even though my monthly infusion is only for 30 minutes, I don’t mind laying down. And the bonus is that the beds are the farthest from the bell you can get.

Is that the right answer?

I’ve heard of others asking for additional signs to be put beside the bell, to remind metastatic patients that they can ring the bell too at the end of infusions. That’s a different answer. Maybe that’s the right answer.

Maybe the answer is empathy. Understanding that others have different experiences. Understanding that celebrating a milestone too loudly can affect others. Understanding that celebrating a milestone is a demonstration of hope, of looking forward and leaving bad experiences behind.

Whatever the overall answer, I’m content to sit in my spot towards the back, away from the bell, and leave others to their celebrations. My version of empathy is to keep to myself during those celebrations and not to remind each of them that they have a 30% chance of becoming me, of developing metastatic disease despite finishing treatment, despite ringing the bell.

Other places my writing is Published!

Orlando Mom’s Blog: https://orlando.citymomsblog.com/?s=Abigail+Johnston+&submit=Search

Wildfire Magazine: you should do yourself a huge favor and just subscribe to Wildfire right now. The online/digital subscription is fine but the physical subscription where you get a magazine chock full of amazing writing by men and women living with Stage IV metastatic breast cancer in a convenient purse sized paper edition. I’ve written several articles that have been published and if you sign up for a years worth subscription, I’m happy to autograph any article of mine you end up with!

Cancer diagnosis story and updates: https://itsabouttimemets.com/mets-stories/abigail1

SurvivingBreastCancer.org: https://www.survivingbreastcancer.org/abigail-johnston

Nancy’s Point: https://nancyspoint.com/storm-cloud-abigail-johnston-metsmonday-featured-post/

Global Girl Community: https://globalgirlcommunity.com/Living-Life-Like-Youre-Dying-When-You-Really-Are/

AdvancedBreastCancer.net

  1. https://advancedbreastcancer.net/living/scars-seen-and-unseen/
  2. https://advancedbreastcancer.net/living/ask-the-advocates-relationships/
  3. https://advancedbreastcancer.net/living/coping-metastatic-diagnosis/
  4. https://advancedbreastcancer.net/living/coping-cancer-related-fatigue/
  5. https://advancedbreastcancer.net/living/functional-allopathic-medicine/
  6. https://advancedbreastcancer.net/living/medical-mistakes/
  7. https://advancedbreastcancer.net/living/atm-mutation-part-1/

Dealing with Prejudice/Racism PART I

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.

Redemption

What does this word mean to you?

The dictionary meaning I found is as follows:

“1. The action of saving or being saved from sin, error or evil: God’s plans for the redemption of his world.

  • [in singular] a thing that saves someone from error or evil: His marginalization from the Hollywood jungle proved to be his redemption.
  • 2. the action of regaining or gaining possession of something in exchange for payment, or clearing a debt.
    • Archaic the action of buying one’s freedom.

    The origin of the word “redemption” is late Middle English: from Old French, from Latin redemptio(n-), from redimere ‘buy back.'”

    I’ve written before about how going to the Metavivor Stampede and METup Die-In in DC last October redeemed October/Pinktober/Stinktober for me personally. To me, turning the angst that October brings into something productive (or that felt productive) reframed how I thought about a difficult time period. Sort of like taking the lemons life brings and turning them into lemonade or, in other words, taking something not palatable and turning it into something that is at least tolerable.

    Thinking about Redemption in a larger scope becomes slightly more complicated.

    Recently, I’ve been watching a relatively new show, 9-1-1 on Hulu. In his past, one of the main characters negligently caused a fire that killed several hundred people. He feels incredible guilt over his role in their deaths, particularly because included in the deceased were his wife and children. In an effort to “balance the scales” or redeem his life, he vows to save a corresponding number of people and, since he is a first responder, he is in a unique position to do so. He plans to commit suicide to join his family once this job is done; i.e., once he has redeemed his life.

    This example is a bit morbid, but it illustrates how I’ve been thinking about redemption where it applies to me and my diagnosis of Stage IV metastatic breast cancer. The wide and lofty goals I had before my diagnosis no longer feel right, they aren’t representative of the trajectory that my life is taking now. So, I need some new goals, a new focus that reflects what life is like after those fateful words, “you have breast cancer” and “your cancer is now terminal.”

    So, is redemption a balance sheet? A list to tick off in order to fix something? A wider more subjective concept? How does one know when one is done?

    I’m don’t fully understand the answers to these questions yet. I can say that, for me, to find meaning in the experience of living with a terminal illness is akin to a search for redemption. The action of regaining or gaining possession of meaning or purpose is quite strikingly similar to the action of regaining or gaining possession of something more tangible. Evaluating when one has achieved the end goal is very different, of course, but the metaphor still rings true for me.

    I’m still figuring this out. I’m still wondering if I can find purpose and meaning in how my life has changed. I’m still figuring out how to figure that out.

    What I do know is that doing something helps. Doing something keeps me busy and not dwelling on negativity. Doing something shows my children how to handle adversity. I’m constantly aware of how they are watching and taking note of how I do life. I want them to remember that I didn’t just curl up and sleep away the rest of my life, that I put my big girl pants on and fought back. That I have bad days, yes, but that when the good days come, I do what I can that day.

    My boys won’t grow up seeing me going to work every day like their dad does. The feminist inside of me is still pretty upset about that. There are other women in their lives who do work, who do have big and lofty work goals. I try to remember to point that out, that Mommy would be doing that but for cancer. They are too young for that to mean much yet, but I know that their future wives and female friends need them to think that men and women can do that, if they want.

    Maybe my boys and the way we are raising them is my redemption. They are certainly my legacy, the piece of me that will remain in the world far longer than I will.

    Maybe that’s the answer.

    It is part of it, I know. Maybe I won’t know when I’ve reached the point of redemption, of redeeming the affect that cancer has had on my life. What I also know is that I have to keep going, keep putting one foot in front of the other, keep trying to figure this out, keeping doing what I can while I can.

    Clinical Trials

    Let me first say that anyone who participates in a clinical trial, at any stage, are my personal heros. It takes a lot to put your life and health on the line and I salute the trial participants and the families who agreed to participate. I am presently on my first line treatment, a drug that was approved by the FDA in 2015, a mere 4 years ago as I’m writing this blog post. My treatment is possible because of people who were willing to participate in all phases of that ground breaking trial and I was super excited to meet one of the original participants in that trial while I was in Philadelphia for the Living Beyond Breast Cancer conference. She’s still on Ibrance nearly 5 years later and truly thriving.

    Full disclosure, I’m not participating in any clinical trials right now, but I have friends who are and I’m writing this to explain what I’ve learned about clinical trials since embarking on my experience of Stage IV metastatic breast cancer.

    First of all, I always thought clinical trials were a last ditch effort, something to try when nothing else is working. I’ve since learned that this is not the case. I have a friend in a clinical trial as her second line treatment! Clinical trials are available at every stage, at every walk of life, and all over the world.

    Secondly, I used to think that clinical trials were something that only a doctor could find and recommend. I’ve since learned that this is not the case. Yes, doctors are a huge part of funneling patients towards clinical trials, especially if said trial is at the institution where the doctor is; however, part of self-advocacy is learning about trials and positioning oneself to be able to participate. For me, I’ve watched which trials are happening where and then traveled to that institution for a second opinion so that I’m an established patient there in order to be considered as a participant for any trials that meet my needs. I also send information to my medical oncologist about a variety of trials just about once a week. She tells me all the time that I keep her on her toes and I’m sure that’s not the easiest thing to deal with.

    Third, there are very practical barriers to participating in a clinical trial for patients. Geography is a big one. So much is encompassed in the issue of geography; for example, cost, traveling, childcare, etc. The way we do healthcare in the United States ridiculously skews the likelihood of survival and good medical care towards wealthy white people. Yet another benefit of white privilege and I have a great deal of ambivalence towards the fact that I have that available to me.

    Fourth, no one really understands the process of applying for Compassionate Use when a trial really is a Hail Mary for a patient at the very end. There was a lot of hype and press around the passing/signing of the law; however, the experience of it has truly been a dud. I don’t mean at the FDA level, they still approve 99% of applications, it is the drug companies that aren’t so cooperative and often send bills in the 6, 7, or 8 figures since the law says they should participate, but says nothing about sending gigantic bills that only a few people in the world could pay. Again, with the skewing towards wealthy white people.

    Lastly, I still struggle a bit with the fact that drug trials in the United States are run by drug companies that have a vested interest in the outcome. The conflict of interests is astonishing. The funny part is that I didn’t think of that until I went to a conference last year and a researcher from another country pointed out how in other countries, the government runs the trials because if a drug company would, they could be tempted to skew the results or select participants to skew the results. There’s probably an emoji that represents the craziness of how that is organized.

    The thing that gives me the most hope is that companies (drug, medical or otherwise) are perhaps finally listening to some of the patient advocates who speak up about disparities, issues, and work to address them. There are a myriad of non-profits that help to stand in the gap when patients are aware of them. Not too long ago, a friend posted about another friend’s difficulty with accessing a life-saving trial and the breast cancer community rallied around that situation to help. Within a few hours, she had transportation and accommodations for nearly free.

    We can be each other’s village when there is a need, if only we know the needs of others. There are many selfless people working hard on the difficult problem of cancer and accessing good care. We are better together.