The gritty side of gratitude

Gratitude has become a buzzword in our culture. Write down three things you’re grateful for, they say. Light a candle, sip some tea, and the world will feel brighter. But when you’re living with stage 4 cancer, gratitude feels different.

It’s not about pretending everything is fine, because mam, it is most definitely NOT fine. And it’s not even about minimizing the hard stuff – because sir, tried that been there, and it doesn’t work. It’s about learning to hold both truths at once: that life can be brutal and strikingly beautiful at the same time.

I remember feeling completely devastated one day in a routine appointment with my medical oncologist. I was nearing the end of my chemotherapy, and we were touching base to decide that in fact, my chemo would end, and I’d continue on only 3 targeted therapy infusions every 3 weeks as my maintenance treatment for the foreseeable future. Is forever too much to ask for?

We sat down and got right into it. I was surprised to hear that the decision to end chemo at that point was based on the research, which says that after six months there’s no good evidence that chemotherapy would continue to work the way it was and that the risks associated with side effects and long-term issues weren’t worth it.

K.

Basically, like all stage 4 cancer treatments, you gamble and hope for the best. It was working, it seemed like my cancer had stabilized, so now was the time to test out the next phase of treatment.

Then an innocent question to my primary oncologist, how much time do I have?

She took a breath and thought for a second, before telling me that if everything went perfectly then she doesn’t see any reason why I couldn’t get to 5 years.

The breath was knocked out of me. Did she just tell me TO MY FACE that I have five years to live? I meant how much time do I have on this treatment. Not how much time do I have to live. I started to tear up, as she started to say some kind and understanding things to what, make me feel better? She just punched me in the face, there is no feeling better.

I couldn’t believe it. My husband and my kids were waiting for me outside because IT WAS MY DAUGHTER’S BIRTHDAY and we had a plan to go out for a special breakfast after I had my quick-no-big-deal appointment. She was turning 8, so naturally it was easy for me to do the quick math and I realized I’d be lucky to see my daughter go to high school.

That’s cool. That’s totally normal.

Then the craziest thing happened when I got into the car with my family. I decided to crawl into the back seat and sit between my son and the birthday girl, leaving the front seat empty. My kids were confused but thought it was the coolest thing ever – they each immediately grabbed an arm and squeezed it a tight as they could and laid their heads down on each of my shoulders. They got so close to me you’d think we’d all merged into one person.

My husband looked at me from the rearview mirror and he could see my eyes watering as I desperately tried to keep it together. His face told me that he knew something not-good happened in my appointment, and I just shook my head implying that we can’t talk about it right now.

I knew, that he knew, that I knew something, that I didn’t want anyone to know yet, you know? You got it.

That crazy thing? A wave of gratitude washed over me. The feeling of these kids holding me so tight, the empathetic husband chauffeuring us to the breakfast restaurant, the sunshine in the sky on that beautiful summer morning… The gratitude didn’t erase the pain, but it gave it context.

That morning’s breakfast that sticks out in my mind and I’m grateful that I had the extra motivation to be extremely present with my family. Sure, I remember that appointment too – but it’s not my biggest memory from that day. I remember the conversation, the sticky syrup that somehow ended up in my son’s hair, the delicious warm meal, the spilled hot chocolate on my lap, and the laughter, among other things.

The tears kept coming to my eyes that morning, but it was because of the love and gratitude I was feeling. One might even say that the world looked brighter that day.

I’ve decided that this *jOuRN*ey of mine is going to include sharing some hard truths that often get overlooked. Or, in my case, sharing the hardest truths that I’ve been keeping to myself for so long. I guess I feel like I’m protecting others by keeping these kinds of details to myself, but now I’m choosing to believe that there’s some good that can come from being open and honest.  

We didn’t get any pictures of that breakfast that morning, but we did get some pictures and video of dinner that night. Sandwiched between my kids, smiles big and eyes bright, wearing a matching dress with my daughter, port bandage popping out of my dress and very little hair to show, singing and laughter, stolen worried glances with my husband – it was a perfect example of how brutal and beautiful life can be all at the same time.

Oh, and don’t forget to light a candle, sip some tea and write down 3 things you’re grateful for today.

Facing fear

Fear shows up in unexpected ways. With stage 4 cancer, it’s not the kind of terror that paralyzes, because well, you learn quickly that you don’t have that luxury. Instead, it’s quiet, subtle, and creeps in during a routine doctor’s appointment, a scan, or even just a moment alone.

But fear has a role. It’s a reminder to live deliberately, to prioritize what matters, and to embrace courage in small doses every day. Courage isn’t the absence of fear, it’s acting despite it. Wait, that is a good saying, I totally made that up all by myself right now.

When I was just getting used to this new incurable diagnosis I was filled with fear. It wasn’t what I expected though, because I guess I thought I’d be scared for my own life or something. But I wasn’t. I was scared for my children’s lives. 

And by that I mean I feared for what their lives would be like if I wasn’t in it anymore. Losing a parent is one of the most traumatic things that can happen to you at a young age, and all I could see was all of the things that could go wrong. 

Some kids take tragedy and become resilient and live very happy successful lives despite it all – but some kids don’t. Some struggle in school, struggle in relationships, experience depression, anxiety and pain, or fall eventually fall into self sabotage or addiction… or insert any bad thing you’ve ever worried about here. Why are we so good at that? 

This fear became debilitating and plunged me into depression for months and months before I got help. I felt helpless and hopeless, and it was scary because I had never experienced that before.

The turnaround came when I was taught how to reprogram my beliefs and thoughts through specialized therapy, mindfulness and meditation. I also dabbled in anti-depressants for a few months while I built the necessary tools. I learned to accept that the future is unknown, but that it’s ok to be uncomfortable with the unknown. I learned how to question my thoughts and beliefs and focus on what I know in the present moment – what is the actual truth? What do I know to be true right now?

So I focused on the truth. Did I know for sure that I wouldn’t be here in the future? No. Are my kids for sure going to have horrible lives if I’m not here? Also no. The other thing is, I came to the realization that I am actually here to help them through the trauma of losing a parent – because I’m here right now. I get to help them build coping strategies and find outlets that they can fall back on when life hits them with the hard stuff. 

I am present, aware and capable of being there for them and guiding them through life’s toughest lessons. Basically they have an extra annoying mom encouraging them to get out there and make the most of life! 

So it’s not about avoiding fear – it’s about acknowledging the fear, letting it teach you, and using it to fuel living fully.

That time I made a room laugh about breast cancer (speech video)

This past July I was lucky enough to be invited on stage at an event by Helen Xenidis, For Once Upon Woman – Her Story. The event was supporting The Healing Ink Collective to help raise funds and awareness for women in the reconstruction phase of their breast cancer treatment. It is so much more than 3D aeorla tattoos, it’s about helping them feel a little more like themselves at a time when they really need it.

The event was filled with inspiration, education and I got the memo to bring some laughter! The women who shared their stories on stage shared incredibly vulnerable and heartfelt stories, and really brought some important messages into the lives of the audience.

I got on stage and completely threw out any plan I had – something I do from time to time – because I really wanted to bring the energy level up, share some heavy parts of my own story in a way that would make people smile and laugh, and not just talk about joy – but physically create it right there and right then in that room.

Sometimes you have to laugh your way through a difficult situation, because what else can you do? Other then cry of course… which I promise I do too! Just not that evening… lucky for the audience! A little less awkward right?

Thank you Helen for a wonderful event, and thank you Jennifer for capturing all the speeches so they could live on far beyond one evening. Meeting the other speakers was the best part, because connection in this cancer community is truly special.

When you click on the vide you’ll be taken to a page with the other stories as well! Watch & share if you know anyone who might resonate with anything you see. Your support means a lot.

Video by @jenniferjjmedia www.jjmediaonline.com

Website: www.onceuponawoman.com @onceuponawoman.herstory

Learning to love the small moments

One of the first lessons cancer taught me is that life isn’t only measured in years, but in moments. Big milestones are incredible, sure, but they’re rare. The truth is, stage 4 cancer forces you to notice the tiniest moments and to appreciate the small milestones, even ones that you’d miss if you blink. 

I love drinking a nice cup of coffee in the morning – bonus if I actually get to sit down while I drink it! I notice the way my daughter spontaneously dances in our kitchen or the living room… sometimes to music that only she can hear in her head. My son’s curiosity about the world gives me more moments than I can count. I love that I can actually see him thinking in real time when a new fact or idea is presented to him, and the way he squints his eyes has his ability to slow me down and stop me in my tracks.

The way the sky looks when the sunlight appears over the treetops on my street in the morning, and the way the backyard turns golden just before it goes down. It’s cheesy but I’m going to say it anyway – these small moments are tiny miracles, and now, more than ever, I stop to savor them.

I want this month to remind you, and me, that the little things matter. That a simple laugh or a quiet moment of peace can be more transformative than the big achievements we chase. Life isn’t just about survival. It’s about noticing, appreciating, and celebrating, even in the smallest ways.

Why I’m sharing truth, laughter & lessons this October

Lindsy Matthews

Ah October. Beautiful, traumatic, October. This is the month that I am constantly reminded about my complicated relationship with the color pink – OH and that I have breast cancer. 

It is breast cancer awareness month, and it happens to also be the month that I was originally diagnosed with breast cancer – 7 years ago! You know what they say… time flies when you’re fighting for your life. 

You know, looking back at the very beginning I see someone who got really good at pushing through some really hard times, but was ‘fine’ because she always knew that there was an end to the chaos, the panic and the fear. Early stage breast cancer is super treatable. Some would even say “a good cancer” if they were really, really brave. Try saying that to someone’s face who has cancer.

I beat cancer back in 2020 and I was lucky enough to call myself a cancer survivor. I’d hear people say “wait, YOU had cancer? That’s so crazy you’re so good looking you’d never even know!” or something like that, I don’t exactly remember. A lot of compliments though, for sure. 

Then my body had to go and release some secret stash of breast cancer cells and release them into my central nervous system. Rude. In other words, the cancer found a way to survive all the targeted treatment, radiation, chemotherapy and surgeries and metastasized. 

In January of 2022 I was diagnosed with Stage 4 Metastatic Breast Cancer (MBC). I know what you’re thinking – how many stages are there? 4. So when people hear ‘stage 4’ they might immediately think of endings. But here’s the truth – it’s not about dying – it’s about LIVING. Living bigger, brighter and more intentionally than ever before.

When we discovered that my disease progressed I was given very little hope that I’d be here long enough to continue experiencing all of the wonderful things life has to offer, for example like renewing my mortgage again. Spoiler alert, we just renewed our mortgage this past summer at a MUCH higher interest rate – lucky me! 

But seriously, lucky me. I think about that all the time. I am so incredibly lucky that my first line of treatment is working so hard at keeping me stable. I am in active treatment right now and I will be for the rest of my life… that is as long as I continue to be one of the lucky ones.

This year I’ve decided that I want to use October for good, and aim my energy at making a positive impact in the cancer community, for my friends or your friends with breast cancer, and for anyone going through hard times in general. For the next month, I’ll share the raw, the real, the painful, and the joyful truths of living with incurable cancer. I’ll tell stories about my diagnosis, the lessons I’ve learned, the moments that made me laugh until I cried… and the times I cried until I laughed.

Basically, I’ll share the wisdom I hope my children, my friends, my family, and all of you will carry forward.

This isn’t just about me. It’s about helping everyone remember that life is fragile, precious, and far too short to waste. 

Finding Hope as an Incurable Cancer Patient on National Cancer Survivors Day

National Cancer Survivors Day is an occasion that unites all of us who have faced the challenges of cancer and emerged as survivors, symbolizing strength, resilience, and hope. As a stage 4 metastatic breast cancer patient, I have a more complicated relationship with this day. While I may not fit the conventional definition of a “survivor,” I’m learning to embrace resilience and find hope in my complicated journey. National Cancer Survivors Day is a reminder that hope exists even in the face of the harsh reality of an incurable disease.

In spring of 2019, I remember the time I got to ring the bell after completing my last chemotherapy treatment. After all, it’s something so many people look forward to after completing their treatment and a powerful symbol of strength and hope. A friend of mine brought balloons and champagne to my treatment, and made the moment even more special. We got to celebrate the milestone that everyone hopes they’ll have. I even had a special trip lined up with my closest friends to truly honor the occasion, because it was over and I never wanted to look back. The future was bright, and I was so grateful!

But then the following week I was told that I’d have to do at least one more chemotherapy treatment. My oncologist was worried that because of some complications I had earlier on in my chemotherapy journey she wasn’t convinced I had enough treatments to give me the best odds of preventing a future recurrence. I couldn’t believe it. I was angry and upset at the situation, but also at myself. I was mad that I celebrated so hard because I should have known better – things change all the time. Then I felt guilty, because I celebrated so openly and I didn’t even think about how this is something so many people won’t ever get to celebrate. They’ll never be finished treatments, and they’ll never be considered a cancer survivor.

So, the day after I got back from that booked celebration trip with my friends, I jumped back into chemo. This time I went alone, this time I did not ring the bell, and this time it felt a lot different. As I walked out of the chemo suite after my treatment, another patient was being rolled out in a hospital bed and I thought to myself, I wonder if they’ll ever get to ring the bell? It hit me just how lucky I was, and how I was one step closer to being finished with all my treatments,  and one step closer to being a cancer survivor. Never in a million years did I think I’d be back in chemotherapy less than 3 years later, in the same shoes as that patient in the hospital bed. 

Traditionally, a cancer survivor is defined as someone who has completed their treatment and remains cancer-free. However, for those of us living with an incurable form of cancer, the concept of survivorship takes on a different meaning. We navigate the rocky landscape of never-ending treatments, constant monitoring, and uncertain futures living scan to scan. Yet, within this delicate situation we find the strength and resilience that deserves recognition. We are cancer survivors because we are currently surviving with cancer. 

As incurable cancer patients we can harness our voice and experiences to advocate for ourselves and others. We become champions for research, improved access to treatment options, and support for those in similar situations. National Cancer Survivors Day empowers us to raise awareness, challenge stigmas, and foster a greater understanding of the ongoing needs of patients like us. We find purpose in our advocacy, knowing that what we do helps create a brighter future for everyone affected by cancer. National Cancer Survivors Day is a celebration of our tenacity, our determination, and our unwavering belief that hope shines brightest when we’re all in this together. 

The Hospice Pamphlet

Lindsy Matthews

Can you imagine being handed a hospice pamphlet? Like, for more information because your medical team thinks you need it? Imagine that for a minute. 

Last year at the end of February I had my first appointment with a new doctor at the pain management clinic in my cancer center. At the time I did not realize it was actually the palliative support clinic, it wasn’t made clear to me. To be totally honest I didn’t even know what palliative care even meant then…

The appointment started out like any other appointment. It was my understanding that this doctor was going to work with my oncologists and take over the medication aspect of my treatment, which included painkillers, symptom management meds and anything else I might need to support me through this new diagnosis. Made sense to me, I had a team of doctors and they all had their lanes. It has always been on me to manage the lanes – but I knew who belonged in what lane and who to go to when I needed something. This wasn’t my first rodeo, but this was my first time at this clinic. 

The conversation with the nurse started off ok, but there were a few comments that didn’t sit right with me. I could feel myself begin to get overwhelmed, but I’ve always had a handle on my emotions in appointments and my nurse was just doing what literally all people do when they talk to me – try to say something to help a situation, meaning well. It’s not their fault they don’t know what to say. Deep breaths.

Next came the doctor, who I was meeting for the first time. It was a lot of the same conversations, going over everything I was experiencing, going over my needs, what to expect, etc. Nothing crazy. In passing I mentioned my kids, and I told them I was on the hunt for some kind of therapy or help for them to make sure they had all the right tools to cope with my situation – which is also their situation. They told me they had some information for me, they’ll give it to me on my way out of the appointment. Cool.

I made it through the appointment, and was on my way out when I reminded them I needed the information for my kids. So, they left the room to go get it, I put on my jacket and met the nurse in the hallway outside of her office. 

Casually in the hallway she handed me a hospice pamphlet. 

A hospice pamphlet. 

Suddenly I couldn’t breathe. 

What the fuck was this? Why the fuck was she giving it to ME? 

I froze in place and tried not to act like I was in complete shock. I stood there while she opened the pamphlet and showed me the information inside, explaining things I honestly don’t even remember… But I do remember when she showed me the back of the pamphlet where there were programs listed for kids. She took a pen and circled the name and phone number of the programs she thought I should look into, and told me how they were great for kids like mine. 

Kids like what? Mine. Kids whose parents are dying. 

I walked away and I tried to hide the fact that I was starting to cry. I had managed to hold in my emotions for the entire appointment, because I am a professional… but this was too much. 

Then the anger. 

Ohhh the anger. 

Up until this point I was never angry. Not once. I never thought ‘why me’ or ‘this isn’t fair’… never. I just didn’t feel any of those things. Right from the beginning it was just always the way it was and I moved forward. I took everything in stride. I cried, yes. I got upset, of course. But I never got angry. 

This was different. 

I’m sure my memories aren’t completely accurate, because it’s hard to remember the details of everything when emotions are so high – but I know that everything changed for me that day. For the first time I was thinking ‘why the fuck is this happening?’ and ‘this isn’t fair’. It felt really unfair that day, and on many, many days since then… 

I stuffed the pamphlet into my pocket and made my way to the parking lot where I’d get in my car and make the same drive home I’ve made a hundred times before. It’s amazing how many times I’ve had to collect my thoughts along this particular route. Making sure I have my shit together by the time I walk into my house and face my kids. 

‘Mom! Mommy’s home! How was your appointment mom?’ is how I’m always greeted. They’re so mature asking me how my appointments are. That day was no different. 

I took off my shoes, smiled, walked to the kitchen, removed the pamphlet from my pocket and tossed it quietly into the garbage as I answered. ‘Really good my loves, thanks for asking.’ 

Breast Implant Illness (BII)

breast implant illness, BII, Lindsy Matthews, breast cancer

Cancer is hard. Yes. But can you believe that breast implant illness felt worse? After experiencing ‘mystery’ symptoms for the last couple of years I can confidently declare that it was breast implant illness all along. All it took was approximately 12 doctors, countless conversations with women, growing media attention, a strong gut feeling and the willingness to go against medical opinion… Oh, and explant surgery. 

Breast implant illness. Otherwise known as BII. 

Just before Christmas, about a month ago, I finally had the implants in my reconstructed breasts removed. Clearly I felt like I needed to end the year the same way I started it – with a bang. 

Breast implant illness is something that isn’t very well understood by the medical community. And that’s me putting it politely. Another way of saying it is… that it’s something that has largely been ignored and purposely hidden in the medical community in order to protect the bottom line. It all comes down to money… a disregard for women’s health… the priority of beauty over health… a societal expectation that women look a certain way or want to look a certain way… I could go on. But I won’t even go there for now, I’ll stick with my own experience. 

Most women who get implants will probably be fine. But some women won’t be. I was one of those women. My body clearly had a poor response to having foreign objects inside it. It was triggering an autoimmune response that was making me sick, and my body was beginning to physically reject the implants. 

I believe my problems were triggered in August of 2020. 

Note: COVID was in full swing – but I’ll leave all of those details out for now.

After one of my reconstructive surgeries I ended up in the hospital with an infection. I was warned by the infectious disease specialist that my implant may need to be removed. It was upsetting, but there was nothing I could do. But after a week in hospital and over a month of being attached to IV antibiotics at home, everything cleared up. I was good to go. Everyone agreed. No need to remove my implant after all. I was happy. 

But I wasn’t feeling great. I was ok, but not great. Didn’t matter… on with life I went. I was cancer free, my surgeries were finally over and there was nothing in my way. I got back to life and I did the best I could to move forward and keep building my life and career again. 

Normal life health things came up – like colds, recurrent strep throat… and other things I’m probably forgetting. I guess my immune system wasn’t what it once was. I knew I had some recovering to do, so I continued to do my best to build back my health.

I was feeling fine. A new version of fine. But I will admit I was dealing with anxiety, and low level depression because I was struggling to truly feel free from cancer. I had heard about how hard it could be for cancer survivors to move on with life, get back to normal and feel like themselves again. But I never thought it would happen to me. But it was. I didn’t feel great and my mind was something that needed a little work. Of course for the most part, no one would have known. 

I went on vacations, I went out with friends, had tons of family fun, crushed life with the kids, and work was going really well. I was doing everything right. But I couldn’t shake this ‘malaise’, a general feeling of unwellness, achy flu-like symptoms. I couldn’t really explain it, to my doctors or to anyone else. To myself even. 

Suck it up Lindsy, you don’t have cancer, you’re good… get over it. Be grateful. It’s just the way it is now. It could be so much worse… 

But I couldn’t shake it. I couldn’t shake the feeling that something was wrong. I was feeling worse and worse – still doing a good job at keeping up with life… but I began to medicate with stronger medications. First low doses, then the doses started to climb. I felt ashamed to be on such strong painkillers, always worried about becoming addicted, and the stigma attached to them. But I couldn’t function at the level I needed to without it. My doctors told me over and over that they’d rather I continue with normal life activity on medication than not be able to keep up without it. I could sense them giving up. Medicate and move on. 

This is when I began to seek out the opinions of other doctors. I started in January of 2021. I couldn’t understand why I was always getting sick and why I always felt sick. 

At this point breast implant illness was an idea I had in my head, but I have NO memory of who or how it was introduced to me. No clue. TV maybe? Social media? A celebrity went public with their brave story of going from double D’s to average C’s??? Who knows. But, I began asking all of my doctors what they thought about it. MAYBE this was it. There were no other explanations, so it was worth looking into, don’t you think? 

No. Turns out they don’t think… 

My primary oncologist told me I was good. Everything looks good. My tests are all good. Maybe I just need more time to recover from treatment…Breast implant illness isn’t likely, it’s not proven and there’s no real studies or legitimate evidence that exists. 

Ok. 

I saw an infectious disease specialist in the US (virtually), and they couldn’t see anything that stuck out. Although they were genuinely sympathetic to my health history, they couldn’t see any obvious answers. And they didn’t have experience with BII so they couldn’t speak to it. They wouldn’t speak to it. 

Next.

I went to a rheumatologist. He suspected Sjrogen’s syndrome, or arthritis… I was actually beginning to feel relieved – I had an answer! Sure no one wants a new autoimmune condition… But at least I could close the book. Until it was later ruled out after all my testing came back normal. Fibromyalgia? Nope. Arthritis again? But.. we already… ruled it out… I thought… 

Ok then how about breast implant illness? No chance. It’s not a real proven medical condition. Bluntly, no. I remember him telling me something about how he’s heard about women complaining about it on social media…. but the medical community agrees that BII isn’t something that’s medically proven.

Awkward. 

I checked in with my GI specialist, who told me they didn’t believe what I was experiencing could be connected to my Ulcerative Colitis. I’ve had UC almost my entire life, and I was currently symptom free and considered to be in remission. So there was no reason to suspect anything to do with my UC. I even asked them about BII – which was way out of their wheelhouse – and not surprisingly they were hesitant to offer an opinion. 

I understood. 

My family doctor was monitoring my medications, and keeping me up with the painkillers I needed to get through my day. BII? She couldn’t give me a concrete opinion. But she listened to my reasoning – which was getting stronger – and told me IF there was anyone who had the predisposition for it – it would be someone like me. 

Someone like me. I’ll take it! That was the first time a doctor somewhat acknowledged it. 

I saw my plastic surgeon and asked if my surgeries could have led to sickness related complications… no dice.. BII? No. He had no direct experience with it, none of his patients had ever had problems… and there was only one study on BII out there and it wasn’t a very good study… not very convincing. So he highly doubted that was the problem. After all, look at all the people who have implants and they’re totally fine.

Boob jobs here, boob jobs there, boob jobs everywhere. 

I was getting frustrated.

Then one day at a physiotherapy appointment, my physiotherapist was getting concerned. She  saw me regularly and was watching my condition get worse instead of better. And then something happened. One day she found a small lump on my chest.

“Do you feel that?” She said. Cue the panic. 

It was around the surgery area, so it was probably related to how I healed… but it was there, and it was impossible to ignore. Was it likely anything other than THAT? Probably? Were all my symptoms beginning to look a different way to us? Yes. I had a lump and I had a ton of unexplained symptoms. When you put it all together it became painfully clear that there was a chance this was a cancer recurrence. 

Back to my surgeon’s office.

He decided to order an MRI in order to rule out a recurrence. The scan appointment was scheduled for two weeks from that day, the longest two weeks of my life.

I wrote about this time previously so I won’t get back into it in too much detail –  but I will say that during those two weeks I began to see everything differently. If it was in fact a cancer recurrence then that would mean it was stage 4, and that would mean it was terminal. I felt like I was slowly dying, so maybe I was… all of a sudden it made sense. 

Then the scan results came back clear. I was elated. Obviously. No cancer! But then the sinking feeling…what the fuck was happening then? 

I was so tired. 

I went to another rheumatologist for a second opinion. He didn’t have much to say to me that any other doctor had said. I asked about BII, and he told me he knew one patient who had similar symptoms and had her implants removed and felt better. The only way to know was to remove them, no testing could prove what this was. 

It was something. 

I saw my therapist and began to question if I was making this all up. Was I someone who had no identity without sickness? Was it all in my head? No. But it didn’t change the fact that I was beginning to feel crazy. I felt like no one was listening to me, I felt like no one cared.

Every appointment I had with every specialist I would ask about BII and no  one had anything useful for me. So I began to talk to other women, and I began to look up all the information online – including support groups. 

I found hundreds of thousands of women with stories just like mine. I began talking to local people I knew through other people, and those conversations helped me immensely. This was real. Their experiences were real. This might be my reality too.  

I found the name and information for a plastic surgeon who specialized in explants for women with BII and I went to see him. He answered all my questions and assured me BII is very real.

REAL. 

He talked about why he thought it was so hard for other doctors to admit, we talked about it at length. He told me that especially because of my history with Ulcerative Colitis (an autoimmune disease) and the infection that he was pretty certain my body was having a negative immune response to the foreign objects. My body was rejecting my implants. My body was sick and rundown from fighting. However there was no way to know for sure through testing, so it felt like a risky call. No one wants to have surgery for no reason, especially if it means going flat. So how certain could I be in order to make that kind of a call? 

Or how desperate? 

At this point more than a year had passed by. I had been looking for answers for a long time and I finally began to get comfortable with the fact that I’d have to take the chance and have my implants removed in order to feel better. Plus, I’d have to do it against the advice of pretty much all my doctors. 

I was sad, because the idea of going flat chested wasn’t exciting… but I’d figure it out if it gave me my life back. So, I began the psychological process of getting ready to say goodbye to my implants. My breasts. 

Somehow I managed to find a way to have a second double mastectomy. 

I was preparing myself for the difficulty of adjusting to a new body. I would think about the outfits I was wearing, and took advantage of my chest while I could. I hadn’t looked normal for a long time now – but this would be particularly jarring. 

Naturally, I booked a boudoir photoshoot. I found someone who had NO mutual connections, and no matter how uncomfortable or nervous I felt about it I knew I wanted the pictures. I knew I’d really appreciate being able to look back. I wanted to document the process. And it turned out to be really fun! Weird. But fun. I got some really beautiful pictures. It was an experience I highly recommend for anyone at any point in their lives. 

I was ready. 

My mind was made up. I knew what I had to do and now was the time. At this point it was late fall of 2021 and I booked an appointment with my surgeon the first week of January 2022. I wanted it done early in the year so I had lots of time to recover and heal before spring. 

You know what happens when you make a plan? Not the plan. 

Something else was happening during this fact finding and acceptance process… My symptoms and pain were getting worse. It had been progressing a little more and more ever since the summer of 2021 and now by the fall it was really having a negative effect on my everyday life.

On top of this constant flu-like achy pain every day, the upper left part of my back kept getting hurt. Any time I did any kind of exercise I’d pull a muscle – it would take weeks to feel better – and then I’d do the bare minimum exercise and I’d pull it again. Sleeping was getting difficult, I’d wince in pain every time I shifted positions while I slept. It was hard to get out of bed. Hard to lift anything. Hard to sit. Hard to sneeze… I was getting even more desperate. All I could think of was how it would all go away as soon as I had that surgery. 

I just had to hang on a little longer.

I don’t know what triggered it, but during the Christmas holidays it hit me that I should have another scan. My surgeon would want it since it had been almost 8 months since that last scan where a cancer recurrence was ruled out. There was so much more pain he’d want a fresh scan, plus my oncologists always told me that if symptoms worsened then I should repeat the scan in 6 months. Huh, funny how fast time flies when you’re getting by one day at a time.

So I made the appointment. 

In a different blog I wrote about what happens next and spoiler alert – they found cancer in my spine. BUT, I’ll breeze by that for now and get back to the breast implant illness. 

My surgery had to be postponed because I had to go back into cancer treatment for stage 4 metastatic breast cancer.

I kept that January appointment with my surgeon.

I told him what happened. He was shocked, his eyes welled up with tears and he was speechless. I cried too. It was a moment. I told him about how I suspected BII and I wanted surgery, but now it had to wait. I was devastated because of the cancer of course, but I was also devastated that I couldn’t get my implants removed. Now more than ever I need my immune system to be working as efficiently as possible, but there was nothing I could do. He told me to come back to him anytime and he’ll do anything I need whenever I need it. 

I held on to those words.  

The entire year of 2022 was spent in cancer treatment and I continued counting down the days until I could lose my implants. It was also an entire year longer where I questioned myself, doubted my decision, went back and forth… My oncologist held strong opinions that BII wasn’t my problem, so it’s impossible not to question yourself when you’re being told the opposite. 

Then I met a new doctor, my palliative care doctor. Being sent to the palliative care clinic is a whole other vibe – which I’ll get into another day – but I had another doctor to ask about her opinion on BII. 

I’ll let you guess how that went. 

Yes, chemo was awful. Radiation was horrible. Targeted treatments weren’t super fun. But these implants were next level problems. It was getting so much worse. But in all honesty it was getting hard to differentiate the causes of the many symptoms because I was on so many medications, treatments and not to mention the cancer itself. 

One thing I was confident about was the fact that my immune system needed a break. It needed to be as strong as possible to do the most important job ever – fight my cancer! If there was even a 1% improvement then it was worth it to me. I just had to wait until the time was right. 

And finally… On December 22, 2022 I finally had the surgery I waited years to get. I was stable, I was stronger, I wasn’t immunocompromised… It was time to rock and roll. My husband took many pictures of me in the moments before, again documenting the process for my future self, and for my kids. My name was called, one last kiss and off I went.

Laying on the table hooked up to the IV’s my surgeon grabbed my hand and gave it a comforting squeeze. So many thoughts were running through my head. Then just before I went under my eyes began to tear up with nervousness, desperate hope and immense gratitude that I was finally here. 

Waking up from surgery felt awful. Even though this was surgery number 5 I forgot how painful it can be. My chest hurt, I couldn’t take a deep breath and I was emotionally overwhelmed. My husband was there waiting for me in recovery, and once I saw him and began cracking inappropriate jokes I knew my life was about to get drastically better. 

I just knew. 

Then came the immediate validation from my surgeon. He began to tell me how my right side was in full capsular contracture. It’s a term that basically means my body was rejecting the implant and had started to tighten, move, become misshapen and hurt the surrounding muscle tissue to the point that it was affecting my mobility and causing pain. 

It was a B – I – T – C – H to remove, were his exact words. 

This meant that no matter what I made the right move. Surgery is the only way to fix contractures, so it was inevitable anyways. I couldn’t help but feel the anger bubble up inside me as all of the past conversations with the many doctors started to play in my mind. How was this missed? How was this ignored for so long? 

It didn’t matter. Now, I wait and see if any of my symptoms improve. The clock was on and there was nowhere to hide now. Nowhere else to look. 

It didn’t take long to realize that my life had changed. In fact, my husband told me only days after surgery that I was different. He said I was getting out of bed faster immediately after a major surgery than I was before. Sure, I hurt and couldn’t move very well… but I was still in better shape and I knew it was all part of normal recovery. 

I was very encouraged.

After the first week I was feeling good. Really good. Recovery was smooth and going well, I was getting more mobile and stronger every day… and I was feeling good. Did I say that? I didn’t want to jump the gun and declare ‘CURED’ yet because I knew it was early… but so far that fluey-achy feeling hadn’t returned. 

Cautious optimism was the name of my game.  

I was seeing my surgeon every week to make sure everything was going well. And it was. Given my history of complications and infections we played it all extra safe and took extra care with my wounds. He didn’t include drains (for fluid that tends to build up with surgeries like this) because there wouldn’t be a ton of fluid and the chances of infection increases. No risks this time. He had to remove fluid every week with a syringe needle, but it was a small price to pay. 

The best part was that I got to tell him how much better I felt every week! I couldn’t believe it – every week it felt like I took a huge leap in my improvement and that sick fluey-achy feeling was still not there. I didn’t remember what it felt like – I didn’t realize how bad it had truly been until it was gone. 

The fatigue, the stiffness, the pain, the malaise, the achy-fluey feeling, the rib cage pain, the tightness, the weakness… gone. Even my face looked clearer, smoother, brighter, smaller. My entire body felt like a weight had been lifted. I was talking with animation, I was walking and moving with pep in my step, I was hyper, and I was HAPPY. 

Unreal. 

It really hit home when I was with my kids at their NINJA gym. I have been taking them to this NINJA gym for a year and I always had to help them out or walk around or move equipment and it was always exhausting for me… I always managed to do what I had to do, but I didn’t enjoy it. I got through it and I had to sit down alot… Not this time. I was moving with the kind of energy I forgot I used to always have! 

Remember Lindsy the personal trainer? The fitness coach? The exercise enthusiast? I certainly didn’t. I lost her.I lost myself. And here I was… beginning to remember how good I used to feel. I even told my husband – maybe I’ll do the Spartan Race this year!

That’s when he really knew I was feeling better. Setting unrealistic exercise goals was one of my favorite things to do! Ha.  

I can confidently say that I know that I had BII. There isn’t a question in my mind. It happened to me. It’s happening to other women and they’re being told they’re fine, and they feel like they’re going crazy and they’re confused and in pain and sick and IT IS NOT OK.  What I had to go through is not ok. 

I have more to say on the breast implant industry as a whole, the FDA, medical gaslighting, women’s health issues, and my doctors who I genuinely believe simply didn’t know any better – but should – but I’ll have to get to that another time. 

One thing I need to mention is that during the last couple of years there have been a ton of proper studies and even more properly documented medical case studies done on breast implant illness. So research is slowly but surely improving. Doctors will get what they need in order to pay better attention to what’s going on.

The FDA put a black box warning on implants too – the black box warning is their most serious label! This was a HUGE BREAK for those of us who knew they were potentially harmful medical devices. The warning says they’re not lifetime products – they’re meant to be replaced every 7-10 years. Do you know how frequent that is in the scheme of things?! Do you know how many women have had their implants for 20, and even 30+ years?!

Finally it’s super important to note that there have also been multiple types of CANCER associated with implants. Specifically the textured implants – which have been recalled world wide – but they’ve been found in all types of implants too. Saline, silicone.. and every singe shape and style. The cancers are rare, but are being found more and more. Can you imagine getting implants after breast cancer only to then get cancer from your implants?? I can. Because it’s happening. Everywhere. To people just like me.

I feel like I have an obligation to get the word out there with all of the right people, and especially anyone who feels like they might be dealing with BII too. I want to help, because if I had a little more help a little earlier on then none of this had to happen this way. The last couple of years could have been monumentally different for me. 

Of course, if it wasn’t for my relentless search for answers I may not have found my cancer as quickly either. So there’s that too. Isn’t it amazing how if you look for a little bit of good in a whole lot of bad you can usually find it? 

So no looking back now, just forward. Way way forward. 

It’s been a year.

Lindsy Matthews, breast cancer

Oh hey friends, it’s been a minute I know. I don’t want to say I’ve been hiding… but I haven’t exactly been not NOT hiding. For the longest time I thought I just didn’t want to be out in the open for everyone to watch, talk about, and judge… But I realize now, a year into my new life as a stage four cancer patient, that it was my energy all along. I simply didn’t have the energy to share, explain, respond… be out ‘there’ in any capacity.

Now, I do. 

It all started when I had my cancer-discovering scans on January 3rd last year. We got the news on January 6th and our nightmare was confirmed on January 11th. I say ‘we’ and ‘our’ because my husband was experiencing it all with me. This was his nightmare too. 

Then came all the scans, tests, appointments, and planning sessions… All while having countless uncomfortable and sad conversations with my family and closest friends.

After a few weeks I decided to share my news publicly on social media, because in the past that’s what I did. I always received so much incredible support from friends, clients, acquaintances, friends of friends, colleagues, people I’ve met along the way, people who heard about me, people who shared a diagnosis with me… I always ALWAYS appreciated it so much. It always helped me feel gratitude and optimism along the way. But then the devastating discoveries kept coming. Discoveries that I haven’t shared publicly yet because it was too much. Too much for me. Too much for my children, and therefore too much to share publicly. 

So, I didn’t.

It wasn’t exactly the start to the year I had planned. But I’d handle it. I always handled it, and with genuine positivity. I was already talking my way through all the ways I was going to handle it with those closest to me. And how I was going to help others handle it. I knew I was in for it, but looking back now I’ll admit that I wasn’t ready for what was coming.

After ruling out a biopsy on any of my lesions (tumors) because they were too risky, we decided we’d have to start treatment with the assumption that I was dealing with the same subtype of breast cancer as before. Breast cancer is sneaky and incredibly good at mutating to different types in order to survive. The type of breast cancer dictates treatment options, and some have a lot more options than others. There are NO good breast cancers, but there was definitely a way for this to get worse for me. It wasn’t easy moving forward without knowing for sure, but time was ticking away and every day mattered.

Treatment began.

The decision was to start with radiation treatment. It was followed by six months and twenty-something chemo treatments, along with two targeted therapies for my assumed type of breast cancer, that I also received via infusions and a bone strengthening infusion. Whenever I had to tell my doctors about my treatment regimen it was met with wide eyes and a ‘wow, that’s a lot’ comment. Let me tell you – when doctors react like that, it’s not exactly settling.

I also had multiple procedures, a couple of hospitalizations due to chemo related complications or procedure related infections… and the scans never stopped. The radiation created problems for me – the kind of problems I was assured that less than 5% of patients experienced. Lucky me, again. Which created more tests, more scans, and even more of being monitored closely. 

Although I had also experienced many good signs along the way, it wasn’t until August that I got my first real break. My cancer was stable. STABLE. I remember being disappointed that it hadn’t disappeared… I had NED in my mind as the goal, which stands for no evidence of disease. But my doctors told me this was the best case scenario for me, with my specific lesions and my specific situation. They told me they won’t all go away, they’ll just stop growing and hopefully stop spreading. ‘Hopefully’… a seemingly innocent word that carries a lot of weight now. 

However – I WILL TAKE IT. We were thrilled. Relieved. Exhausted. Nervous of course…. But we’re absolutely ok with it. I was given the go ahead to go off of chemo for now, and continue with the targeted and bone therapies every 3 weeks as my maintenance treatment regimen. I was to have 4 different scans every three months – a different one every month, to make sure nothing would be missed. I felt like I could take a breath for the first time in a while… until I was told the first 6-12 months after chemo would be the most telling. I didn’t understand. I was stable, wasn’t this good? The vibe I was getting from my doctor wasn’t what I expected. 

It was good. Of course. But now it’s a matter of when my disease progresses. Not if, but when. Trust me, there was no ‘if’ anywhere to be found in her statement…. I know because I desperately searched for that word from my doctor. The way I always search for keywords, phrases and tone in all of my appointments.

There are always two conversations happening in my appointments – the one being said out loud, and the one that isn’t. 

If my cancer progresses in the first 6 months then we’re likely dealing with a new type of breast cancer (or multiple types) and it would be considered extremely aggressive. At that point a biopsy would be necessary and treatment changes would have to be made. If I made it to a year with no new progression, then it’s a sign that I’ll probably get to a few years on my current line of treatment. 

Ok, so I guess I don’t get to breathe just yet. Will I ever get to breathe again?

Currently, I’m breathing. I’ve had multiple scans since the summer and so far so good. I’m stable. I’ve held stable for 6 months, and I’m optimistic that I’ll continue to hold stable for a long time. I have monumental scans next month – and even though I don’t have any specific reasons to be worried, there will always be anxiety. Scanxiety. Every time I go in there I remember how easy it is to have your whole world turned upside down, again and again. Just like that.

It’s amazing how dependent I am on pure luck. LUCK. Because you can do everything right, and still have a cancer recurrence or progression. You can do everything wrong and stay stable or become NED, or be considered a survivor. What right and wrong even mean have always been up for debate too. Who even knows. All we can do is the best we can, with the knowledge and resources we have. 

For now, there it is. The story.

This story is lacking in a million details, but it’s simply impossible to get to it all in one written piece. So here is the start, the start of me getting my story out there, the beginning of beginning again. I have so much to say because I’ve learned so much this past year. There is so much that I believe is too important to keep to myself. I want to talk about perspective, toxic positivity, positivity, depression, anxiety, my prognosis, statistics, advocacy, breast implant illness, narcotics, stage four-ness, breast cancer awareness (true awareness), radical remission, palliative care, surgeries, treatment details, parenting, tough conversations, taking up hobbies, exercise, meditation, priorities, travel, how I feel, career, what’s next….

And be hilariously charming in the process – of course.