Six years

I’m surprised I let August 13th pass by without even thinking about what happened that day in 2019. I always remember 8/8 as the day my tumor was cut off in 2013, and 8/13/19 is the day I learned that some had stayed behind and taken residence in my spine, among other bones. I was 99% sure I would be dead by now.

Six years later, I still carry the grief cloud that once was black and all-consuming but is now a soft gray, following me like a shadow. It has been lightened over time by the immense gratitude for every day I live to spend with my family and watch my kids grow. And years of therapy.

My life is relatively normal. I’m on the smoothest part of the road right now, no major side effects. Just menopause and wicked hot flashes, but I will gladly take that for 40 more years if that’s the worst of it! There are nasty bumps up ahead, I just don’t know how far in the distance, and there are no warning signs or exits*. I hear about what’s coming from others in my support group and all of the side effects and issues they experience. We joke how low the bar gets when you have cancer. Updates often sound like, “My appetite is meh, I have diarrhea, and the meds the doc gave aren’t helping much. I can only do one thing a day and then I’m just SO TIRED. My neuropathy is still giving me trouble so it hurts to walk. But other than that, I’m doing fine.” 😅😳

I wish I could give back the Cancer 2.0 operating system (0 stars, too many bugs) that hijacked my body and soul six years ago, but it’s what I have to work with. 

I will never be free of cancer.*

I will never “beat this.”

I am not fighting a battle.

I’m learning every day how to live- not only survive- with this unwanted guest. The friends I’ve lost along the way give me the resolve to pull myself out of self-pity, keep pushing on, and stay present. During my strength-training class at the gym, the instructor reminds us that we are fortunate to be able to lift and get stronger, we chose to be there, and we all know people who would but can’t. When I want to quit, I think of my friends and say their names in my head for each remaining rep.

Kate. N’Dia. Pat. Holly. Jen. Robin. Pam. Anne. Susan. Ruth. Janet. Diane. There are too many to remember on the spot but I try.

We get one life and tomorrow isn’t promised. Next year isn’t promised. “Some day” is today.

*The only hope for an exit off of this rollercoaster is RESEARCH for more treatments. There is a promising breast cancer vaccine in trials right now, but funding is up in the air due to 🤬J🤬 caring more about gilded ballrooms and criminalizing poverty than funding cancer research. Many possible future treatments may never make it to trials without funding. I will NEVER stop speaking out about this because it is literally life or death for many, many people.

Another day, another death

Wow, it’s been a minute. I’m coming up on my 43rd birthday and 6-year cancer-versary of stage 4, and I am so grateful to *still* be doing well. It is crazy to think that 6 years ago, I was 99% sure I would be dead by now.

I am not grateful, however, that I have watched so many women with the same disease die. I’m part of the best support group ever, Common Ground through the Breast Cancer Coalition of Rochester, and we seem to have waves of tough times. Either things are stable for most members, or multiple people are not doing well. So far, the last 12 months have not been kind, and we are continuing to trend in a bad direction. We entered the year grieving several members who passed at the end of 2024. In the first half of the year, we lost more beloved members and a few others I knew outside of the group. Since then, multiple women have had setbacks, scary hospital stays, progression, and are nearing their last options. We haven’t had space to recover from one before more devastating news comes. **In the week between starting this entry and posting it, one woman died and another learned about a serious progression.**

The woman who died last week turned 41 the week before. FORTY ONE. Here I am on the cusp of 43, stable, watching friend after friend be taken by cancer way too young. Though I don’t feel survivor’s guilt per say, I do have unanswerable questions and rage. A LOT of rage.
Rage for children who lose their mothers.
Rage for spouses and partners left to grieve while holding the family together.
Rage for parents who experience the upside-down hell of burying their children.
Rage for lost futures together.
Rage for the sllloooowwww progress of finding new treatments.
Rage for the research that isn’t possible now, thanks to the current regime pulling it.
Rage over the lack of control of our own health.

I’m ashamed to admit that I don’t cry much about these deaths anymore. I probably put up a wall to protect my heart from the repeated beatings, or perhaps my heart is so scarred, it doesn’t weep as easily. Or both. Never in a million years did I expect to be used to death. To be familiar with the local funeral homes, and remember whose calling hours were held there. To literally lose count of how many women I have had the pleasure of knowing and then lose. I absolutely hate how un-broken I appear when a group member passes. It doesn’t do justice to their impact on me or the gaping hole they leave in the world. My lack of emotion is so off-putting to myself because I KNOW how much they meant to me and yet I can’t express it sufficiently. If I allow myself to feel it fully, I would never stop crying. I haven’t found an in-between space that holds grief without completely losing it. Am I alone in this?

Getting to know and love these women, then watch them suffer and die way before their time, is a special kind of torture tinged with the blessing of knowing them. Whenever I hear someone say, “Everything happens for a reason,” I want to punch them in the face and show them photos of every single one of my friends who has died from this horrible disease and ask, “WHAT IS THE REASON FOR THIS??”

As my group sits firmly in the valley of death, it feels inescapable. Sometimes we find ourselves clinging to each other on a hill, temporarily safe from the worst, but soon enough we tumble down to the bottom….losing friends and picking up new ones along the way. We’ve been in the deepest pit for too long now, and I don’t see a reprieve on the horizon. These are the times when it is hardest to hold onto hope.

Eclipse

Today, my family gathered to watch a total solar eclipse over our own town. Maybe you’ve heard about it? 😏😅 It’s kind of a big deal. Global scientists and my local city have been preparing for years, with lots of hype the last several months.

But to me, it’s a big deal for a reason other than the physics of the cosmos.

In October 2019, about 2 months after the MBC diagnosis rocked my world, my family drove to Connecticut to visit friends, Matt and Naomi, whom we met on our honeymoon 13 years prior. We had lightly kept in touch via Facebook since meeting, but it wasn’t until an impromptu drop-in while they were passing through town in July 2019 that we reconnected (now with kids!) in person. Luckily, we all clicked just as well as we had before, as did our kids, and we made plans to visit them over Indigenous Peoples (Columbus) Day weekend. Since then, we’ve made an effort to see each other at least once a year, and we always have an incredible time together.

The July 2019 meet-up that reignited our families’ friendship

October in CT

During this particular visit, I was still in a trauma shock/daze and cancer consumed every moment in my mind, but you couldn’t tell from the outside. I still had to function, run a household and business. Everything felt so much heavier and harder in my head and heart despite looking “fine.” I wasn’t sure how I would be able to enjoy myself while steeped in such grief. I hadn’t laughed since dx (maybe shallowly but not really) and couldn’t imagine how I ever would again. I felt safe going though, because I knew I wouldn’t have to perform false positivity or pretend everything was fine.

If you’re lucky, you find one friend in life who accepts all parts of you, laughs with you, cries with you, and connects on such a deep level, you wonder if you met in a past life. The flow is so easy and you feel both lighter and fuller after time together. I have been blessed with multiple friends like this, and Naomi is one of them. The random circumstances under which we met, the thin thread of connection through Facebook that never broke over 13 years, the last-minute meetup that felt like no time had passed at all – it’s one of those circumstances that feels like more than a coincidence. Strangely, we could definitely pass for sisters also 👯‍♀️

That weekend ended up being a start to the looooong road of healing, on which I’m still traveling. I wasn’t surprised at the tears I shed, but I was surprised, and relieved, by the laughter. For the first time since diagnosis, I genuinely laughed and it blocked out the cancer thoughts just for those moments. The freedom was fleeting but it happened, which was proof that it could happen. It was a few gasps of air while still drowning in grief. No one was denying reality or avoiding painful conversation, and yet there was room for joy to make an appearance. Laughter can’t cure cancer but it truly is medicine for the soul.

I left that visit still in a trauma daze but with a pinhole of hope poked in the exterior. I remember thanking Naomi for being who she is and telling her, ironically with tears in my eyes, it was the first time I had laughed in months. I don’t think she realized(s) what a gift that weekend was and what a gift she is to me. Until maybe now, reading this 👋 I ❤ you!

Naomi is a high school physics teacher (voted both favorite and funniest teacher, which says a lot about how awesome she is!) and a self-professed astronomy nerd. She tracks the eclipses years in advance and plans her family vacations around totality locations. Shortly after our visit, she informed me she (and her fam) wanted to come for the total eclipse happening over our city in 2024. My very first thought was, “That’s 5 years from now. I can’t plan that far ahead. I probably won’t even be alive.” And I shared that out loud. Not a fun thing to say or hear, but going by the statistics at the time, it wasn’t a stretch. I hadn’t even had my first CT scan to see if the meds were working. Nevertheless, I confirmed her air mattress reservation request, whether I would be here or not.

Since that conversation, the Eclipse of 2024 has been a holy grail of sorts. A lofty goal I craved but didn’t dare assume. Will I make it? With every passing year, surviving until the next feels more possible. Only because I’m doing well and my meds are working, and it’s never lost on me that the cancer can outsmart them at any time, so I can never really get too comfortable. The pandemic years were like a black hole sucking time into a void, and all of a sudden, I could see the goal on the horizon. A 365-day countdown, save-the-date advertisements, event and viewing options. Time ticking to 2024 – the year that felt like an impossibility.

Even though the skies were too cloudy to actually see the eclipse, it was here. Naomi and her family are here. I’m still here, laughing. It’s a big deal. Maybe I’ll tag along to the 2026 one over Spain.

2024 eclipse

A decade in Cancerland

This coming summer marks 10 years since my family was evicted from “normal” life and locked in Cancerland. TEN YEARS. Mindboggling. I still have moments of disbelief and anger that we were sent here. A whole decade!

25% of my whole life. 50% of my adult life.

71% of my daughter’s life. She started preschool the same week I started chemo.

91% of my son’s life. I found the lump at the end of my pregnancy with him, though it would be 18 more months until a diagnosis. I couldn’t lift him into or out of his crib after surgery.

They don’t know any different. But I do.

When looking back on old photos or remembering the “before,” I see completely different people who had no idea what was in store. Sometimes I wonder who we would have been if cancer hadn’t completely altered the trajectory of our lives. Would I be more fun and relaxed without the extra worry? Would we be aware of the importance of the present? Would we have taken all of the incredible adventures we’ve been on, knowing that NOW is the time to do those? Where would I be working? Would the kids have developed differently?

It’s not a better/worse comparison because we’ll never know. We all have pivotal moments in our lives that put us on an irreversible path. Sometimes we recognize those moments as they happen, and other times we realize later where they led.

Just like every other time I reflect on something heavy, my brain and heart offer the counterweights to all the awfulness. Inner growth, meeting my Peeps, perspective, prioritizing travel, living with gratitude, deep connections with people. I don’t use words “positive” “good” or “pros” in this scenario because I would never ever choose the cancer path to lead me to such experiences. I don’t even consider them silver linings; for me, that phrase diminishes what the lining surrounds, and how much work it takes to develop. **Incoming tangent** If you miss your flight connection but that allows you time to eat a full meal and the airline puts you in a hotel for the night, that’s a silver lining. “I would rather be on my way home but I’m glad to eat and rest. Not a big deal.” To have life turned upside down, toxic treatments destroying my body to keep me alive, a real threat of early death, total uncertainty, emotional turmoil…..no silver lining there. The counterweights are tools and skills that take work to develop and embrace for survival. They don’t just show up as a consolation prize with a diagnosis. AND those tools and skills are possible without having cancer. Whew. I didn’t realize how much and why I disliked the term “silver linings” until now!

No one chooses to be sentenced to Cancerland. We all desperately want a way out. Some eventually find the border and live seamlessly in the normal world again. Some have no way out, and we have to look around, find the sturdiest portion of rocky ground we can, and build a new life. The other residents become friends and chosen family, and somehow, a new (albeit shaky) normal is born.

After both diagnoses, especially MBC 4 years ago, I mourned the milestones I would miss. But I’m still here. My daughter- who 10 years ago was jumping up and down with her bubbly smile and pigtails- is entering high school. My son- who 10 years ago would awake screaming in the middle of nap because of teething- is entering middle school. I’m currently listening to his 5th grade band rehearse for their last concert of the year, as well as their elementary school years.

I’m so grateful I’m still here to witness and be a part of their lives, and every day I have more hope that I’ll see more of those milestones. (I tap into that gratitude when I’m running around crazy, chauffeuring them all over the place! 🤪)

Scan Results Day

I did it. I stayed off of MyChart for 2 weeks and managed to forget and not worry about my scans for most of that time.

Saw the doc today, and my scans are still stable!! 🥳🥳🥳 I’m soooo grateful!!! I ask my doc every time if my bones are healed to their maximum capacity or if there is still more filling in that could happen (the cancer ate away the bone). Since he is fairly conservative and doesn’t like to make promises he can’t keep, he generally just keeps it as “things are stable; stable is good.” He has warned me that I will never get to the coveted status of NED (no evidence of disease) because the mets were so extensive and there will always be evidence/scarring in my bones. He has sparingly slipped NEAD (no evidence of active disease) in the mix in the past, and he said it again today 😁 Needless to say, I am thrilled and relieved, and good scans always deposit hope into my tank.

The bad news of the day (for me) is that tonight’s Indigo Girls concert in Ithaca that I was SOOOOO looking forward to had to be postponed due to a positive case of Covid for one of them or someone on their team. I am super duper bummed. It pales in comparison to the good news of scans, but I can be both thrilled with my scans and super disappointed about the concert, too. The fact that they were on the same day was meaningful to me. Crossing my fingers we can attend the TBD rescheduled date!

Scan Day

It’s been 6 months since my last scan – my longest stretch. Some oncologists “graduate” their patients to a 6 month scan schedule (instead of 3 months) after several years of stable scans. That isn’t the case with my doctor though; this happened due to scheduling conflicts. My onc has let me push it to 5 months before, as long as I wasn’t having any new symptoms and my bloodwork looked good. This time, 5 turned into 6. I’m not upset about it at all- I don’t like scans and it’s more radiation.

On one hand, I’m relaxed about it because I have no evidence of any issues. On the other hand, there isn’t always evidence, which is why I get scanned regularly. I’ve been at this almost 4 years on my first line of treatment (so grateful!!), so based on statistics, it’s very possible I’ll have progression soon. But I’m not a past statistic, and everyone’s story is different. So I’m choosing to have faith and confidence that this scan will still show stability, knowing that my attitude or mindset doesn’t change the outcome. It just helps reduce my scanxiety.

For those unfamiliar with the CT scan process, here’s a summary. After arriving at the imaging center, they place an IV, and then I have 45ish min to drink the equivalent of a Big Gulp of contrast solution. Then they set me up in the machine and pass me through a few times based on the areas I have scanned, which is basically my nose to pelvis. For the second set of scans, they inject the IV contrast. The contrasts help differentiate organs from bones and other soft tissues. The actual scans take only about 20 seconds each, so I’m usually in and out of the scan room in 10 minutes.

Here are some things I’ve learned over 3.75 years about having CT scans:

• 1. Hydrate hydrate hydrate starting a few hours before my appointment. This makes my one good vein plump up for easier access for the IV.
• 2. Go to the bathroom before getting my IV placed (see above).
• 3. Wear clothes without metal and I won’t have to change into a gown.
• 4. Ask for flavored contrast. They don’t always offer it but they usually have options. The plain contrast tastes like dirty water and I make the stank face the whole time.
• 5. Dress warmly because the room with the machine is always freezing. Ask for a warm blanket if I need it.
• 6. Wear my hair down or in a low ponytail. It’s quite uncomfortable to lay still on my back with a hair bump on the back of my head.
• 7. Go to the bathroom again before the actual scan.
• 8. When the IV contrast hits during the scan, it makes me feel like I wet myself, but I know I didn’t (see above).
• 9. STAY OFF OF MYCHART. Some people like to read their results at home before seeing the doctor. For me, I prefer to wait. Even if the scans look good, there are so many scary medical words that create anxiety. It’s much better for me to wait for my Dr to say “scans are stable” as soon as he enters the room.

Big Gulp of contrast 😳

Usually my scans are a few days to a week before my Dr appt and I don’t have to wait super long for results. This time I’ll have to wait 2 weeks due to scheduling and insurance red-tape. My pre-approval for scans expires next week and the imaging place can’t get it renewed quickly enough to have scans closer to my appointment. 🙄 I’m grateful to have insurance and that the imaging center knew this before I showed up on a later date, however the hoops we have to jump through to get care is RIDICULOUS. I’ll save that rant for another day.

So, I’ll keep myself busy to reduce scanxiety during the next 2 weeks. I know that I might feel irritable, and that my anxiety might show up in other ways. I’m aware enough now to recognize it and name it.

I gratefully welcome vibes/prayers/juju for stable scans and patience and calm in the waiting period! 💙💗💚

Learning to live in the AND

This journal entry is an evolution of sorts, since I wrote the first part in the middle of my long writing hiatus when I couldn’t figure out why I hadn’t written in so long. I finished it just now, months later, and I’m glad to see the progress.

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I’ve been in a bit of a sweet spot lately, coasting on stable scans and the longevity of my meds. While it’s a great place to be, it’s also a dangerous place to be. Closer to the “shoe dropping” (there will always be more levitating shoes), and the higher the coasting, the longer and harder the fall when it’s my turn for bad news.

I’ve been vacillating between a few different mindsets and I guess I’m not sure where to land. For a few months, I was feeling pulled toward full-on blind hope, desperate to believe in my core that I will be an anomaly and live for another 40 years. Ignore the statistics, distance myself from the terminal part of this illness, and assume I’ll be fine long-term. There are crazy miracles that happen, why not me?

I can’t shake the realist in me though, so I’m blocked from fully living in that space. I also see some of my Peeps struggling with disease progression or life-altering side effects, and I am terrified of losing more friends, and those same things happening to me. It’s like the Ghost of Cancer Future showing me what’s to come through the suffering of my friends. How can I fully live in hope without ignoring my cancer friends and denying them my support because I can’t be exposed to the possibilities? Those are at odds with each other. I’m not better or luckier than anyone else in this club. I’d say I got dealt a pretty unlucky hand by joining the club so young.

I also can’t shake the curiosity about the data on alternative and complementary lifestyle changes I could make, but don’t. Do they really work? The real question is are they worth all the work and trouble to put those into place? Why am I afraid of committing to them? Maybe because I don’t want to change so many habits – though I know they’re healthier even without cancer – if it isn’t going to help. Many of them feel like extra work and depriving me of things I enjoy- like sleeping, eating whatever (especially sweets), sitting on my butt watching TV. I want to enjoy my life, not feel like it’s 100% revolved around maintenance to keep me alive. But why wouldn’t I want to focus my life around keeping me alive and healthy?? What’s my deal? I’m resentful of having to consider these as life or death choices. There’s no way to know for sure if choosing door #2 will lead to a longer life, but I would choose it in a heartbeat if that outcome could be promised. I know everything behind door #2 is healthier and better for me, but still, after 3 years, I’m still standing on the outside, wondering why I haven’t gone through. It’s like a years-long tennis match in my head and I don’t know who is winning.

“Cut out sugar, eat plant-based!”

“Food is medicine, heal yourself from the inside out!”

“Exercise is the most important thing to keep your body and mind healthy!”

“Meditation reduces stress and leads to finding peace.”

“The brain is powerful and can literally change your physiology on a cellular level.”

“Life is short, eat the cake!”

“Don’t deprive yourself of what you enjoy! Enjoy it while you can!”

“Rest, don’t overdo it, your body needs energy to heal!”

“You can’t think yourself into health. Mindset won’t save you.”

“If a positive attitude and willingness to live was a cure, no one would die from illness.”

And here’s the part where I’m developing mindfulness around the inner turmoil. When overwhelmed and in trauma, it’s easy for our brain to default to this OR that, black OR white. Polar opposites feel like the only options. However, as I’ve been learning from working with Sabrina at Heart in the Moment (and listening to We Can Do Hard Things podcast), there is a lot of space between those opposites. All of the above can be true. So instead of picking a side, I’m finding my way through the middle. The moderation. The AND.

I can eat healthy AND still have sweets.

I can exercise to build strength at my level AND rest when I need to.

I can practice mediation, even if it is an irregular practice, AND not expect it to cure me.

I can carry hope for myself AND support my cancer friends, knowing my story isn’t their story.

I can long for a future AND experience the present.

It isn’t always easy to find the AND space, yet the more I practice thinking and living there, the more at peace I feel. Remembering the AND feels like someone turning off the heat when the pot is boiling over. It’s very grounding for me. When I find myself overwhelmed with opposing sides, I can take a few deep breaths* and know I don’t have to choose. It can be both. It can be both for you, too.

*easier said than done at times

Anne

The Peeps lost two members last week.

I don’t intend to write tributes every time, but there are a few Peeps who have impacted me in profound ways, and it feels necessary to capture their essence. Anne was one.

Two words that come to me first to describe Anne are wise and warm. When I joined the group, Anne was several years out from her diagnosis, and I looked up to her very much. She never used tropes or platitudes (unless she was making fun of them!); she listened and shared with honesty, compassion, and wisdom. Somehow, she understood the unsaid and had just the right words to address it. When I was struggling with something, she heard the deeper issue I couldn’t verbalize and responded in a way that felt like a bullseye, especially around parenting and dealing with the grief of leaving our children behind. Will they be okay? Have I done enough? Anne gave me hope and peace about what I’ve already instilled in my children and what I’m unknowingly teaching them just living with this disease. I always felt relief and comfort when I walked into Common Ground and Anne was there. She was like a security blanket. I knew my heart was safe around her,

She wasn’t just an example for how to cope and live with MBC, she was a steady guide for us all. She gracefully lived on the edge where fear and gratitude meet, expertly walking that tightrope. Her presence was calm and accepting even in the face of her own progression and months-long experience of debilitating vertigo and nausea. I can’t say she didn’t complain, but the extent of Anne’s complaining sounded like, “Yeah, it sucks, but oh well.” She was as funny as she was poignant, and her humor wasn’t a mask or an escape. She gently lightened the room by poking fun at herself or the absurdity of life with MBC in general. There’s so much more she gave our group, like practical resources for the Medicare circus, sharing her love for fishing through Casting for Recovery, and too many things to remember right now.

In the three years since my diagnosis, I haven’t been able to emotionally handle visiting any of the Peeps on their deathbeds. I didn’t understand how others could manage being so close to death, and I felt guilty and selfish that it was too much for me. My Peeps reassured me it was normal to feel that way, and when one Peep goes, she represents all of us. When I learned that Anne had reached the point of no return, my heart broke. I had seen her slowly decline and was dreading the day when she was no longer there to guide me/us with her wisdom. She asked for us to come say goodbye and for the first time, I felt no hesitation. I had to see her. She made such a powerful impact on me and literally made my MBC life easier, I couldn’t NOT go. I visited her the week before she died, and shared (not for the first time) how much she heard and spoke to me on levels no one else could, my life is better because of her guidance, and of course that I loved her. She told me she was at peace, and in very Anne-fashion, said her only fear now was that she would be hanging around longer than anyone anticipated. Mimicking looking at a watch, she joked, “It’s been 3 weeks, she’s still here?”

She died 6 days later. But she IS still here in my heart comforting me, and always will be. I love you, Anne.

MBC Day

It’s been a minute since I’ve written. Maybe I didn’t have much to process? Or maybe too much? I couldn’t skip today though.

Today is Metastatic Breast Cancer Day. Metastatic breast cancer means that breast cancer cells have spread to other parts of the body. There is no cure; it is terminal. Patients are in treatment for the rest of their lives, with the majority dying within 5 years.

I’m happy to say that per my appointment this morning, my last set of scans are stable (disease hasn’t progressed)! That’s possible because of a treatment that was approved only 7 years ago. SEVEN. My youngest child was born before that. My initial diagnosis was before that.

I am alive today because of research. Not ribbons, not pink socks, not “awareness.” Research. As mysterious and challenging as cancer is, it is astonishing how much scientists have discovered about it and how to stop it. Funding MBC research is crucial to me in a literal survival sense, not just for myself, but for everyone effected by breast cancer. When MBC is no longer terminal, breast cancer is a lot less scary for all stages.

Most national and international organizations associated with breast cancer allocate a measly percentage to MBC research despite it causing 98% of breast cancer deaths. My two favorite organizations that directly fund MBC research are Metavivor and Breast Cancer Coalition of Rochester (BCCR).

Tonight, #LightUpMBC is happening all over the country and the world to shine a light on metastatic breast cancer and to benefit Metavivor, whose sole purpose is to fund MBC research. On a local level, BCCR is one of the only grassroots community organizations that funds MBC research, and they have been doing so for an astonishing 19 years.

I ask you to consider donating to BCCR and/or Metavivor so that life-saving research can continue. Please use this link to my fellow Rochester #LightUpMBC ambassador’s fundraising page to support Metavivor.

When donating to BCCR, use the ‘in honor of’ section to write “Andrea Reynolds, research” and 100% of your donation will go to MBC research grants.

Donate to my friend Lori’s Metavivor page

Donate to BCCR, include “research”

Terminal Terminology

Cancer survivor. Cancer thriver. What do I call myself if I don’t identify with either one?

Before the recurrence, I was a survivor. I endured something awful and came out on the other side. From the basic definition, I stayed alive. I didn’t die. To me, being a survivor also involves the passing of time. Leaving the hard thing in the past and living beyond it.

To me, survivor doesn’t apply to MBC. Cancer will never be in the rearview mirror. It’ll always be in the passenger seat holding a gun against my head. My experience is contained in the verb of surviving, remaining alive. That’s a pretty low bar though, and I aspire to more than only surviving.

Thriving is on the other end of the spectrum. It evokes realizing full potential, an ideal environment, feeling nourished in the soul. Soooo, I’m going to give a big NO to all of those. Who can actually thrive with a disease that robs us of so much? I’m envious of those who can.

So where do I fit on that spectrum? Is there a middle term? Some people will say, “who cares about labels? Don’t put yourself in a box.” It’s not about a label, it’s about finding a term that fits me because the most common ones sound dissonant. Just like I don’t consider myself sick, I have a disease (“You don’t look sick!” “You haven’t seen my insides.”). I need a word that captures the in-between space between merely breathing and living my best life, as the youngins say.

Is there a term for “living with a terminal illness in my 30s, doing relatively ok, struggling with multiple things regularly, sometimes grateful to be alive and feeling good, sometimes grieving and angry and can’t handle daily responsibilities, sometimes able to access joy and laughter, sometimes anxious and grumpy, always worried for my future and searching for a pocket of peace”? With the exception of the first phrase, I may have just described human life in general.

Living with cancer. Since the word liver is taken 😂 I might settle on lifer. I’ve heard that term and before now I only thought of it in the treatment sense (in treatment for life). But after writing this, I’m seeing lifer in a different context. Doing life – not thriving but more than surviving – with cancer.

I’ll sit with cancer lifer for now and see how it feels. Is there another term that you use or you’ve heard?