The winning inspirational speech at Speaker Slam, April 25, 2023. (6min)
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.
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.’
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.
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.
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.
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.
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.
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.
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.
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.
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.
I’m hoping this is going to be one of the last health updates I have to give for a very long time, simply because I’m hoping I won’t have much to say about it moving forward. But I do have something to say about the recovery process in general.
The last couple weeks have been a bit of a roller coaster, sure. But today I stand here in a good place, with a body that isn’t hurting very much. My mood has been up and down on my way here, and my brain has been seriously overthinking every aspect of my life – but I can happily say that pain doesn’t seem to be a major issue for me right now, and that is a good thing.
The cortisone shot I got at the rheumatology office was pretty great, to say the least. I was feeling SO good – hyper – energetic – wildly optimistic about life – but then I crashed. On day 7 I woke up and I didn’t feel good, and my body hurt. The depression quickly followed, because I knew the effects of the shot had worn off, but worse I realized that everything I had been feeling was definitely because of that shot, and not because I had finally gotten back to normal.
Normal. There is that word. I’ll get to that in a minute.
I was told the shot would have an effect for 2-3 weeks, and I was disappointed that it only lasted one week for me, but at least now I knew I had another tool in my pocket. I called the office to let them know that it worked, and to book another appointment to have it again. Then the disappointment and borderline anger came when the receptionist delivered the news that these shots can only be administered a few times a year. What.
This is another example of a key piece of information being left out of the initial conversation with my doctor. Why does it seem like I keep getting half of the story when I’m making decisions about my health? I was frustrated, I’m still frustrated. I try to put myself in my doctor’s shoes – maybe most patients don’t need to know, don’t ask, don’t care… maybe they think it isn’t an important part of the conversation or maybe they straight up forgot – after all, they’re human too. But whatever it is, I feel like my emotions around it all could have been managed if I had all the information.
So, this shot is only a once in a while thing. Cool. Not great, but it’s something I’ll remember if I need it in the future for important events or really bad stretches of pain or symptoms. You risk damaging all the tissue surrounding the injection sites, and it isn’t reversible once the damage is done. Essentially you could create new pain and issues down the road just trying to treat the current pain and issues you’re experiencing now. Good to know. Kind of important. Noted. Check. Thank you.
Then over the next couple of weeks I felt my symptoms dissipating. Every day I felt a little better, and the pain became less and less. I found myself forgetting that I even had pain a lot of the time, or I’d realize ‘hey, I don’t feel pain right now, weird’. It’s like I am afraid to be excited or happy about it, because that’s usually when something happens to pull me backwards back into it all. So that’s where I’m at right now. A cautious optimism that maybe all I needed was WAY MORE time then I was ever prepared for, to recover from all the cancer treatments, surgeries and accompanying complications.
What about my implants? Well, I honestly believe they will need to come out at some point – and probably sooner than later, but not right away. Although the pain has improved drastically, I am definitely not feeling my best. When I say that, I mean I believe that I can feel better – and I believe some less-pressing-yet-persistent symptoms are likely caused by the fact that my body is having some kind of reaction to the foreign objects inside my body. These plastic things full of chemicals are likely preventing me from my best state of health. It honestly creeps me out when I think about it, but I’m not ready. I’m not there. It’s hard being that honest with myself, never mind other people – but there it is. I’ll get there, but I’m still holding on to the idea that I’ll continue to feel better and better, and maybe if I wait just a little longer I won’t have to worry about it. After all, the doctors all tell me the implants are safe.
When I think back, and when I think WAY back, I was always told that after treatment everything would be over. I’d be back to normal, good to go, I can move on, my old life would be waiting for me. So when that never happened it affected me deeply. I worried that there was something wrong with me. I worried I didn’t do it right, or that others were better at moving on then I was. I worried about pretty much everything and it dominated my thoughts. In short, it didn’t feel good to not feel good. It’s like I had to deal with the physical aspects, but worry even more about how I FELT about it all. Like there is a right way and a wrong way to recover.
There is a huge gap in care after cancer. Because it pretty much doesn’t exist as a part of our formal treatment, and there really isn’t much direction to go seek it out on our own either. If my doctors shared some messages differently at the end of our time together I believe it would have been different for me. If my surgeons changed their messaging around my recovery then I know things would have been different for me, and it would have been easier to manage my expectations around it all. Here are a few things I would have liked to have heard, now that I look back. If you’re in my shoes now, or will be soon, or might be one day, or have a loved one in the middle of it all – here they are.
From my oncologists:
Hey Lindsy, you’re going to need ongoing support for a really long time now that your treatment is over – don’t be worried, don’t feel ashamed about it, it’s normal and everyone recovers differently. In fact, some people and most people never feel back to normal, they learn to live with a new version of normal – but one thing I can promise is that it will eventually feel normal to you and you’ll be happy. And although some people can move on from treatment without many long term physical effects, there are lots of people who experience them for months or years. Here are some resources to help you if you’re one of them.
From my surgeons:
Hey Lindsy, this is an intense and life altering surgery. If there are complications, it’s even more involved. It’s going to be a longer recovery than you’ll probably expect, but it’ll be worth it. The recovery doesn’t end when the wounds heal, it is a process of getting to know your new body and learning to work with it. It will not be the same, it won’t ever be the same, but it’s what you have to work with, and you will be able to make it work. Depending on what your expectations are, the time will vary, so let’s talk about your expectations so we can properly prepare you. Here are some resources to help you.
I can go on. And maybe I will. I think these messages can help others who feel the same way I do. Physical pain and complications are inevitable and very real – but how we react to it, feel about it and let it affect our mental health is the real area of concern here. There is a difference between pain and suffering. Pain is pain, but how we suffer from it is what really affects how we live our lives, and how we let it control our thoughts.
There is an opportunity to improve how we send our cancer patients and survivors out into the world, because I have experienced the gap first hand, and I hear about it all the time from others in the cancer community too. I know our system is doing the best they can most of the time, and the care I received during treatment was amazing, and I’m here today typing this article out as proof – but we can always do better. More information and resources, better communication, and a focus on mental health is where we start.
I feel great. That’s something I haven’t been able to say for a really long time, without some kind of ‘but’ attached to it. Isn’t that incredible? I feel great. End of sentence.
I’ve been off my pain medication for about 10 days now, and I’m so happy to be done with all of that. I feel clearer and more focused on healing than I ever have, and being off pain medication was a huge first step I needed to take to move forward. It wasn’t easy, because feeling all the things I’ve been taking the medication to avoid for so long was incredibly unpleasant. But more than the physical effects, the emotional and psychological toll was much more challenging to get past. I had to really work hard at reminding myself that the discomfort would be temporary, and worth it. And I was right, it was temporary and it has been so worth it.
So am I off pain medication and pain free? Technically yes. Which is something worth celebrating! But there is a little catch… I saw a second rheumatologist last week to see if there was anything that could come out of it – it never hurts to get a second opinion – and our conversation was very interesting.
One of the things I asked him was about whether he had any insight on the whole ‘my body could be fighting the foreign objects (my implants) and creating an inflammatory reaction’ thing.
“I’ve seen it one time.” He said.
I was shocked – no doctor has ever even said that much to me! I was clearly taken back, and asked him more questions. He told me he had one patient who benefited from having her implants removed, and it cleared up symptoms she was experiencing that mimicked other autoimmune diseases. I asked how they knew it was her implants, and he said it was only figured out after surgery. Damn. Back to that.
Then after lots of questions from him about my medical history and symptoms, he talked about how he thought my issue could be spondylitis – a kind of inflammatory condition and arthritis in the back and spine. I asked him how it could be that, if there aren’t any markers in my bloodwork. He said it doesn’t always show up in tests. Oh, here we are again.
So I’ve been told my implants aren’t a problem by many doctors because my bloodwork shows no inflammatory markers. But now this doctor is telling me that I can have spondylitis without any inflammatory markers in my bloodwork. Do you see why this is so frustrating? I’m always back to the same dilemma – how and when do I decide I have no choice but to remove my implants, as a complete shot in the dark.
The reason why I feel great is this. The rheumatologist gave me a hydrocortisone shot. He said that if I got the shot and the pain went away then it would be a good indicator that the inflammatory condition in my back was likely a problem – maybe even THE problem. I wasn’t interested at first, the idea of taking a shot of medication as a guess didn’t feel right. Plus I was only off the Percocet for a few days at this point, so I wasn’t through the amount of time I needed for the withdrawal symptoms to wear off. To put it simply, I didn’t know what was responsible for the pain and discomfort. It wasn’t until he assured me it is relatively low risk for a possibly big pay off – OH and he may have mentioned that his schedule was booked so far in advance it was kind of now or never – so I decided to give it a shot. A shot. Get it?? Besides, it’s not like pumping my body full of medication was something I wasn’t used to… What’s one more try? I got the shot, booked a follow up and went on my way. He said that if the pain disappeared, and then reappeared in 2-3 weeks then it was a strong indicator that we were on the right track.
So here I am, a week after that appointment and I haven’t felt my achy and radiating pain in pretty much that entire amount of time. Sure, there is a bit of lingering fatigue and malaise… but where did the pain go? It’s gone. Was it the shot? Probably. Or has my pain been better for a while now, but the Percocets had me on the revolving cycle that perpetuated the pain and unwell feelings? I guess I’ll know in a couple weeks.
The very optimistic side of me thinks that maybe this shot will wear off and I will feel as good as ever. Maybe my body just needed time to get back to a place where I didn’t have to worry about it as much. It isn’t impossible for things to just get better – and I’ve been putting in the work with my mind-body connection, mindfulness, mindset and physical rehab – so it isn’t impossible that I just may have made the best effort and a lot of good decisions lately to support this. I am doing this, everything I’ve been working for could finally be here.
My energy level fluctuates, but for the most part I’m happy and hyper. My workouts at the gym have been better than I imagined this early on, and I think being back at the gym (now that you need to have your vaccines, it made me feel comfortable going back) with machines that can help stabilize me so I can be more targeted with my strength training has been a game changer. I’m less likely to hurt myself, or overdue it, or tweak something when I’m being so intentional with what I do. It feels great to be back! And I’m stronger than I thought I would be, so that’s a bonus.
As for the Spartan race I spoke about a few weeks ago – I’ve decided I can’t do it. It pains me to make that decision, because I love jumping into challenges like that… but I’m terrified of hurting myself and setting myself back. Doing hundreds of burpees and all those intense obstacles would definitely be risky, and I just can’t take those risks. My husband is going to do it, and my kids will do the kids race. So this year I’ll sit on the sidelines and cheer them all on, the same way they’ve sat on the sidelines cheering me on so many times before. And next year will be my turn of course.
Well, here’s to another week of strength and optimism!
Earlier this week I woke up one morning and I thought to myself ‘today is the day’. The day I won’t take any of my narcotic painkillers, and the day I’d try something new to feel better and live better. That was the day I had the courage to let it get worse before it got better, if that’s what it took. It was the day I had to quit taking something that I’ve grown very used to needing to get through my days – for almost nine months.
I’ve been wanting to stop taking Percocet for many months now. I didn’t like being so reliant on medication like that, and there is a huge stigma that follows opioids, making it something I didn’t particularly like to share with many people. When I did mention it to people, the amount of times I heard ‘be careful, those drugs are super addictive you know’ are too many to count. Yes, yes I do know, thank you.
I started taking them in January of this year, 2020. It started a couple days after we rang in the New Year virtually with friends – when I realized I wasn’t nursing a hangover, I was just straight up not feeling well. I remember thinking ‘Oh no… I must have another infection’, because that is exactly what it felt like. A flu-ish type malaise, body aches, headache, sore muscles, fatigue, etc. were my symptoms – but I couldn’t figure out where the infection actually was. I hadn’t had any operations or surgeries for a few months, and there wasn’t any visible sign that my body was fighting something, like it had in the past.
I had an appointment with my family doctor, and after trying anti-inflammatory medications and muscle relaxants – we switched to the Percocet because I had success with it in the past, and I tolerated it well. I also really needed it, the symptoms were getting really bad and it was hard for me to get through my days. It started with just one dose a day, eventually moving to twice a day, and a few months in – since this past summer – I have been taking it three times a day.
A drug like Percocet can begin to lose its effectiveness over time, so I assumed that’s why I kept needing more of it. My doctor assured me that since I was on what was considered to be a very low dose, it was more likely that my symptoms were getting worse. I was taking the medication at strategic times during my day so I felt well for specific or important parts. I’d try to hold off as long as I could in the morning on days when I had later nights, or I’d take them much earlier in the day sometimes for things like work and it meant I’d have a more challenging evening. It was exhausting constantly counting the hours in my head, analyzing every little thing I felt in my body, and knowing that I couldn’t be on this medication forever… I have to be careful you know…
I hated taking it, I felt guilty, I was worried about addiction – because even though I was fine, I’m smart enough to know that no one starts taking medication like that with the intention of becoming addicted – and there were negative side effects as well. I couldn’t imagine being on it for so long, but that’s how time works… it just keeps ticking by, one day at a time, while I hunted for answers regarding why I was dealing with everything I was dealing with.
BUT. Here I am. Opioid free for almost a week. I know it doesn’t sound like a very long time, but I promise you, the days have been incredibly long while I wait out and analyze everything I’m feeling, to see what I’m actually feeling. I knew I had to be off the medication so I could really know what my symptoms are, and how bad they are, before I make huge decisions about what I do next. I couldn’t keep silencing the symptoms, because there was always a chance that things had been improving, but the medication could be masking it, or the side effects could be disguised as my original symptoms. It was complicated. So I’m trying to make it simple. No drugs, just symptoms.
Of course I can’t even trust my symptoms right now, because there is definitely a period of detox. Although I was on what would be considered a low dose, you can’t consistently take something like that and expect there to be no withdrawal symptoms for at least a small period of time. I couldn’t get an appointment with my doctor fast enough, so I did what all humans would do in my position – I googled the shit out of it.
Let me tell you, Google was not kind. When you google this kind of thing – ‘how to stop taking opioid medication’ or ‘how to ween off Percocet’ or my personal favorite, ‘how long do withdrawal symptoms last’ – you get a whole bunch of information that was designed to help people kick a serious addiction, and although I would never consider myself an abuser of prescription drugs, it definitely doesn’t make me feel good to be reading up on all of it. And it definitely didn’t make me excited to go ahead and stop taking it. The internet told me it was going to suck, so it was going to suck.
But I had to quit. I knew what I had to do, and I had a timeline in my head. For a little while, every day I hoped it would be the day, but I couldn’t bring myself to do it. I was scared, and I didn’t want to feel like shit, because well quite frankly, it sucks. But then one day I got an advertisement on my Instagram feed for the Spartan race. It’s happening at the end of October in Ontario, and it’s the race I did a little over three years ago, before the whole cancer thing went down. Maybe I could do it. This gave me the push I needed to make it happen. This is the kind of unrealistic goal that makes me overcome and thrive! It’s what I do.
So, in an effort to kick the drugs, and determine if it was actually a realistic possibility for me to be able to do the race that definitely requires a considerable amount of upper body strength – I decided my strategy would be to keep moving and exercising through all of the withdrawal symptoms. I would walk, strength train, run when I felt good, and walk some more. I even did three full sets of proper burpees on the first day, to see if I could do them. In the Spartan race, if you can’t do an obstacle then you have to do a 30 burpee punishment, and I know I’ll be doing a lot of burpees – like a couple hundred – if I decide to take this on.
It was hard, but I believe I’m through the hardest part. I obviously felt the aches and pain that the medication used to cover up, but I also dealt with insane restlessness, insomnia, hot flashes and chills, fatigue, shortness of breath, lightheadedness, heart palpitations, excessive yawning, and really bad nausea. Plus, my head was not in a good place. I was depressed, unhappy, irritable… and even though rationally I knew that it was the effect of not having that happy kick in the brain the Percocet used to provide – it didn’t make those psychological symptoms any easier. I have been taking regular strength anti-inflammatories like Advil to help me get through the busier parts of my days, but that’s it.
Then yesterday I woke up and my body and mind felt lighter. I got up early, had a really great strength training session, walked it off afterwards to help my body recover… and had a really good day. Was it totally normal? No. I still have some shit to deal with. BUT, I will admit, my symptoms are not as bad as I worried they’d be. In fact, I’m even optimistic that in a few more days I’ll feel even better. Maybe – just maybe – my body just needed all that time to straighten itself out. I’m choosing optimism, and hope.
My rheumatologist told me that it is possible that my body hasn’t recovered from the serious infection I had last summer. He told me that when someone goes through something like I did, and dealt with all the harsh treatments and surgeries that I did, my body’s pain receptors could have been affected, and essentially they could have been malfunctioning. He told me that it wasn’t impossible to be experiencing all these symptoms and issues even a year later. It’s frustrating to have all sorts of guesses about what the problem could be, but no answers. I’ll have to get comfortable with the fact that I may never get a proper explanation, but I’m not against never knowing as long as these symptoms go away and I can enjoy a pain free existence. That’s a problem I’d love to have – never knowing.
So what’s next? More time off medication, another appointment to get a second opinion with another rheumatologist this week, a naturopath appointment with a specialist in the mind/body connection, more mindfulness and meditation practices – something I give a lot of credit in my ability to work through pain and discomfort everyday – and lot’s of moving. Remember, moving not only helps you physically, but it does even more mentally. Plus, apparently I have a spartan race to train for! (wink)
I had been contemplating sharing where I’m at with the decisions I have ahead of me for a very long time. In the beginning of my cancer experience I was very public about everything, but a couple years in I definitely felt the fatigue of sharing everything, with everyone, all the time. It was tiring trying to think of worthwhile captions for my posts on social media, it became a chore to take pictures that I could share, and I worried that I was sharing too much and it seemed like the interest in my story was diminishing. It simply became something that was no longer serving my happiness and peace of mind.
Of course, since the beginning of the year I’d share every once in a while some of the fun things I was doing, or something with my kids… so to the outside world it probably seemed like I had moved on in terms of my health and everything was ok. Sometimes I’d go a couple weeks without posting at all, and I’d always be so touched – and honestly surprised – when many people noticed my silence and would go out of their way to check in with me. To those of you, you know who you are, thank you for that.
The chronic pain I was experiencing was hard to explain, and I wasn’t sure if I wanted to share what was happening because at that time I was worried that if it was something serious, I wasn’t sure if I wanted to go through it so publicly the next time around. I felt like I wanted to keep it close because I didn’t want anything to take my focus away from fighting whatever was coming – or from my kids who’d need me more than ever.
It was in January when my physiotherapist was doing her normal treatments and assessments on me when she questioned me about a small lump on my chest, just above where my implant sat on the right side – my cancer side. My chest was hurting a lot everytime I did any kind of cardio exercise, and she was focusing on the scar tissue in the area in an attempt to help that. I honestly wasn’t concerned at first, because it was so small it was hard to find, and it didn’t feel like my first lump. Besides, I had a double mastectomy – what would be the chances.
Well, according to google and about a million websites on the subject, I was reading that around 5% of women will have some kind of a regional recurrence in the first 10 years after a double mastectomy. Although my breast tissue was removed, there is always a chance that some breast tissue cells get left behind, and it only takes one cell to cause another problem. One teeny tiny cell. I was declared cancer free the day of my surgery in November 2018 – but the chemo, radiation and hormone treatments were all done to maximize my chances against recurrence of my HER2 positive cancer, the kind of cancer that if left alone after surgery had something like a 25% recurrence rate, an incredibly dangerous number.
It was my physiotherapist, who knew all of the physical symptoms I was experiencing at the time that began to question if something could be seriously wrong, and she asked me to go get the lump checked out and talk to my doctors as soon as I could. It seems silly, but the idea that my cancer could be back never even crossed my mind until then – and then all of a sudden the dots began to connect in my brain. Suddenly, I knew I had a problem.
My plastic surgeon who was following up on my case regularly since all of my surgeries was my first appointment. After examining me, he agreed that I needed an MRI to determine if the lump was something to be more concerned about. After all, I was experiencing more pain and symptoms for a longer period of time than really any patients he had before me, so there could be an explanation here. A really shitty explanation. It was a couple days later when I got a call from my hospital telling me I was booked for a bone scan – which is not what I was expecting. I was immediately alarmed and after I hung up the phone my stress and anxiety shot through the roof. I know how things worked by now, and for my appointment to be switched to a bone scan after they reviewed the request for an MRI I knew my situation was being escalated, and now they’re looking for a cancer recurrence elsewhere in my body.
Not good. I was not good. I was emotional, my heart was beating a mile a minute and I couldn’t help but worry that everything here was beginning to make sense. I called some people, explained what was going on, and tried not to think about what it would mean if I got bad news. I was really worried, and my people were really worried too.
If you look up breast cancer recurrence online you’ll see a few different numbers. In conversations with my oncologist I was told that it happens in about 5-7% of women with my kind of cancer, at my age, with all of my diagnosis and treatment details. That means 5-7 out of every 100 women like me will be told that their early stage breast cancer has metastasized into a terminal stage 4 diagnosis within their first 5 cancer free years. Do you know how many women there are like me? A terrifying amount. Did you catch the word terminal? Because it is.
Surviving a stage 4 diagnosis is not something that happens. You hear about some women who are considered miracles if they get 10 or more years, but the average survival rate after that diagnosis is more like 3 years. And only about 22% make it to 5 years. In short, it’s a devastating situation. A situation that I now had to worry about for myself.
My scan was in just over two weeks, and I’d get the results a couple days after that. At first it felt like it would be impossible to wait that long to get an answer – and many people voiced their outrage at the fact that I had to wait so long. But the truth is it didn’t matter, if this is what it was then two and a half weeks made no difference. It was a busy COVID season, we were in lockdown, and to be honest I truly felt like scans needed to be prioritized for people who were just beginning their cancer experience, because timing does matter a lot in those situations. I was at peace with the timing, and I couldn’t help but be grateful that I had some time before I couldn’t unknow what could be coming. I needed the time to get my thoughts and feelings together, and to enjoy life as we knew it.
I’ve been through this before, the days leading up to my original breast cancer diagnosis are something I can’t properly describe – but there is a certain peace and happiness you feel, grateful for life, and a new perspective at just how incredibly fragile life is. You see every single moment in a different light, you realize how much you have to be thankful for, trivial problems in life suddenly disappear from your worries and are forced into the present moment in everything you do. The days suddenly go by so fast, and you find yourself promising yourself that you’ll worry less, be more grateful and will do so much better if you’re given a second chance.
In those two and a bit weeks you’ll notice a change in the camera roll on my phone, and I’ve actually reflected on that a few times since. I was taking A LOT of pictures, I was dancing with my kids, reading, lying in bed with them listening to them tell me all their stories, thoughts and plans for the future. I would quite literally just stare at them in awe, and then at the same time a sense of dread would come over me that they would have to learn how to navigate this world without me. They weren’t ready. They needed me. I had so much to teach them and I couldn’t stand the thought of them being so hurt, so sad and so traumatized at such a young age. They’ll never understand, and there will never be enough time.
It’s incredible how emotional I feel right now, six months later, typing this out. If I’m being honest, I’m having trouble seeing my screen as the tears fill up my eyes as I reflect on this experience. I had to come to terms with the idea that this could be how my story ends, and in turn this would be my kid’s story – losing their mom to cancer during childhood. Those two weeks were harder than all the hard things I had been through leading up to that point – because I never worried about not surviving before. It wasn’t even an option. I knew I’d beat it, I knew I’d be ok, and that was that. Absolutely no question in my mind. Was that actually the reality of my case? No, of course there was always a chance this could have gone wrong for me – but I didn’t go there. It served no purpose and I believed that my mindset mattered more than anything.
So why was I having a hard time feeling so confident at this time? Well, I felt like shit. I’ve explained before what sypmptoms I’m exeriecing, and at this time it seemed pretty fucking clear that all my symptoms added up to a breast cancer metasisis to my bones. My bones ached, and the aches radiated out from my ribcage, back and would travel into my legs, arms, feet and hands. It was worse at night when I wasn’t moving very much, and pain relief never really came even when I was taking painkillers. I had a general feeling of malaise, fatigue and sensitivity, and there were no other answers, or even suggestions at this time.
The emotional roller coaster I was experiencing was intense. I found myself reaching out to people I hadn’t talked to in a while, and I treated those interactions as if it might be some of my last… I know it might sound extreme, but I couldn’t help but feel the need to wind down some of those relationships, and lay the groundwork to prepare them for the next thing I would tell them. I didn’t get into the details of my situation with many people, because I wasn’t sure yet and I honestly didn’t want to waste any of the time I had with them talking all about me or cancer. And I definitely didn’t share any of this on social media, because I had decided that if this was happening again, it would be private this time.
The morning of my scan didn’t feel good. There was a certain deja vu feeling in the air with the heaviness I’d felt a few times before. My husband made me a big breakfast with the help of my children, who of course had no idea about the gravity of the situation at all (because that’s something you don’t address until it’s necessary, in my opinion, call that a big fuck NO) and we sat and enjoyed each other until I had to leave for the hospital, as if nothing out of the ordinary was happening.
“How long will you be at your doctor’s appointment?” They asked, like they do every single time I leave the house for an appointment.
“Oh not long, maybe an hour… I’ll be back as fast as I can.” I explained. Hugs, kisses, smiles, normalcy. Off I went.
Because of COVID, I had to be alone. I drove alone, I cried alone on the way there, I parked alone, I took a deep breath in my car alone, I checked in alone, I waited alone. I was injected with a nuclear tracer alone. I waited some more, alone, and I walked into the room alone. I was given instructions by the technician and layed down in the bone scan machine before he went behind the glass panel where a small team would watch my scans and prepare them to be reviewed by the radiologist. It was an awful 40 minutes of trying to avoid looking at the screen, where I’d see different colors popping up throughout my body – what did that mean? Did it mean something? Would it be possible that I’d see something myself? Or no, they wouldn’t let that happen, people would freak out. I was freaking out.
It eventually ended, I was shaky and nervous but I headed out and went home. There was nothing left to do now but wait, so I did everything I could to distract myself and remain calm until I had a reason not to.
The next morning I was teaching a virtual fitness class at 9am when my phone rang at about 9:10am. I panicked, so naturally, I ignored it and continued teaching. But that was it, that was the call. I couldn’t leave my class, and truthfully I didn’t want to. The call was coming from my oncologist – she wasn’t even the one who ordered my test – oh my god it’s already in the hands of my oncologist – it’s not good news. And the results came back in less than 24 hours, that doesn’t happen unless it’s bad…. I was spiraling… with a smile on my face while I told my class to keep doing lunges for another 30 seconds.
Then I got another call, two minutes later. Not good. Then the notification that I had a voicemail. Fuck. 20 minutes left in this class… What was I doing again? Where was I in this workout? I managed to finish the class, and immediately called my oncologist, left a message and waited. I told Brian that I was worried because of who called and how fast this call came… I told him I’d make sure he was there when I got the news.
About an hour later – I think – she called. Brian abruptly left his video meeting, and stared at me like if he stared hard enough he’d be able to read my mind. I didn’t put it on speaker phone, which in hindsight was pretty brutal – but I wasn’t thinking clearly – and my doctor quickly told me that she had my bone scan in her hands and it looked good, no signs of cancer. IT LOOKED GOOD. I looked at my husband, gave him a thumbs up, and tried not to cry while she went on to tell me about it. I felt relieved, sure, but I also felt really fucked up. This was the news that I wasn’t dying – I wasn’t dying people. This was good news!
After a conversation bringing her up to speed on everything that had been going on, she told me she wasn’t concerned it would be a cancer problem. I was cancer free, this wasn’t it. I was told that there really isn’t evidence of long term chronic issues after breast cancer treatment, she really didn’t think she could help me. She recommended I see a rheumatologist next, because it sounded like it could be an autoimmune disease or disorder of some kind. She told me the lump is likely a build up of fatty cells and scar tissue leftover from surgery… they’re scary to find, but are harmless, and aren’t even that uncommon. Not common, but not uncommon. Ok, makes sense.
Before we got off the phone, I asked her about her opinion on breast implant illness, and wondered if it’s something other women have come to her about. The response I got was pretty much that she didn’t know enough about it, there wasn’t enough medical evidence that it was something I should be concerned about, all of the evidence out there is compelling but it’s anecdotal and without proper research and information she didn’t see any way this could be my issue and really couldn’t speak definitively on the subject. I felt silly for even bringing it up – because it isn’t real – silly me. This was the 4th doctor who had maintained the same position on BII in my quest for answers, so I could let it go now, right?. The next step was following up with my family doctor, the doctor who was managing my pain treatment, and getting referred to a rheumatologist. On it.
But first I had a few very important phone calls to make. My parents, and closest friends were waiting, and this was news I couldn’t wait to share.
I shouldn’t have to trust my gut when it comes to making important medical decisions. I have doctors, science, diagnostic tests, experts and specialists for that – why am I being told to trust my gut? I can’t trust my gut because it’s wrong all the time, but it’s right a lot of the time too. Is it my gut telling me this is what I have to do? Or am I just desperate for an answer?
For almost a year I’ve been dealing with chronic pain and feeling unwell. It got worse in January 2020 and I’ve been on painkillers pretty much everyday ever since. My bones ache, my muscles feel weak, my skin feels sensitive to hot, cold and touch, I’m fatigued and I compare the feeling to having the flu or an infection. In fact, it feels like the post op infections that I fought off for the better part of 2020 have never fully left my body, it feels like I’m still fighting an infection.
Of course, I’ve been tested for all of this and there has been no stable sign that anything is happening in my body. Blood work comes back fine, X-rays show nothing interesting, ultrasounds are clear, bone scans and MRI’s are cancer free and my symptoms don’t line up with anything specific. This means no specialists have been able to diagnose me with anything – so there is no treatment or course of action. No answers. No end in sight.
In the process of ruling everything out, I’ve had my eye on the growing evidence that Breast Implant Illness (BII) is a real thing. It’s something that tens of thousands of women have had experience with, and are advocating for the medical community to recognize it, treat it and explain it as a risk for any women who are considering implants. It’s a controversial subject even though more and more doctors are operating on women and finding irrefutable evidence that some women have adverse and in some cases very serious complications and reactions after implant or reconstructive surgery. The physical evidence being documented by these doctors are shared in pictures and video online and in the media and it’s becoming increasingly hard to ignore.
There have been about 60 peer reviewed studies (that I’ve come across) on how breast implants have created adverse health complications and reactions, but there is still a long way to go. The information you find on the internet is a little all over the place, but a number I see over and over again by many reputable websites and organizations is that about 20% of women experience this illness and have to resort to having them removed permanently.
I can’t find any numbers that compare breast cancer reconstruction surgery to general implant surgery – and although I often see ‘women with autoimmune disease may be at higher risk’ there aren’t any solid numbers or information available on that either. It’s a lot of anecdotal evidence, women sharing their stories, and a relatively small number of medical professionals that are driving the movement to have this studied and shared further.
Are my implants making me sick? This is a question I’ve been trying to find answers to, and it’s apparent to me that I’m never going to really get them. I have autoimmune disease, so it seems like I’m at a higher risk. I’ve had multiple post op infections, so I’ve been told that my implants should have probably been removed a long time ago, which means this puts me at a higher risk. I definitely seem to run into all the uncommon annoying weird complications, so I’d say that this could totally be just my dumb luck that I’d also have to deal with something like this.
My family doctor, plastic surgeon, rheumatologist, an infectious disease specialist, a second opinion doctor after all my infection drama last year, my oncologist, my gastroenterologist, a headache and women’s health specialist and another doctor have all told me that there is no evidence that BII is a real thing. A couple doctors told me they couldn’t really speak to it, but from what they know, it isn’t a real thing… and even after pressing a second or third time in repeated visits to some of these doctors, the message is the same.
I recently had an appointment with a plastic surgeon who has a reputation for believing in BII, and operating on women who have chosen to explant (take out their implants) for almost 10 years. In fact, I just had to explain what explant was in this paragraph because my word program sees it as a spelling error – it isn’t even a real word online and in English! I found this surgeon who runs a private practice through a BII website, and read more on social media and other BII groups – that he’s the guy. He’s one of only four doctors – FOUR – in Canada who really have any kind of tie to BII at all. It’s incredible how many doctors won’t even treat or operate on women who want their implants removed at all.
Now, I’m waiting on my next step diagnostics, but as it stands he believes that my body is likely having an overactive immune reaction to the foreign objects in my body. In fact, he is quite certain that’s what is going on and he believes that I need to have them both removed, along with the capsule surrounding the implants.
A capsule is the product of what the body does to protect itself from the foreign object. The body begins to protect itself by creating a layer of tissue around the implant, eventually becoming encapsulated in it entirely. Many capsules become problems because it tightens, can sometimes move or become misshapen. Other times the capsule isn’t an issue at all, and is simply just what happens. The surgeon I saw can see evidence of a capsule on the side where I had radiation and extra surgeries, but he doesn’t see any major issues just by looking at it.
Reading all of this you may be thinking that this is a no brainer and I need to at least give it a try. But here is the catch, there is no way of knowing if this is the issue or not until the implants are removed. I have to literally have a life altering surgery – again – in order to see if this works. I can’t do tests, I can’t get a biopsy, imaging doesn’t show anything unless there is a rupture… there is no way of knowing if this will work until days and weeks after it happens.
Oh, and the really fun part is that it is not covered by OHIP. This is a roughly ten thousand dollar surgery and I am responsible for paying it. I’m not exactly sure how it makes sense, especially since I had to have this surgery because of breast cancer, and OHIP will cover a seemingly unlimited amount of corrective reconstructive surgeries – but not to have one final surgery to have them removed. Read that again – I can undergo many more surgeries that are paid for, as long as I keep the implants – but I have to pay a hefty amount of money to have them removed for good. It is a lot of money, enough money that I know women who have to take that into consideration into their decision making process. I know women who haven’t been able to have the surgery – and their symptoms are even more convincing than mine – because they can’t afford it. I don’t want to spend that kind of money on something like this, because I can certainly think of about a million more things I can do with it – but of course if it’s what I have to do, I’ll do it. My health and well being is obviously an investment worth making. Unless of course this isn’t the answer… then I’ll be out ten thousand dollars with a flat chest and that scares me.
So what if this isn’t the answer? What if I’m so distracted by the possibility of BII that I’m being blinded by it and I can’t see what else might be going on? What if I’m so desperate for an answer that even this completely uncomfortable and borderline unbearable answer is something I’m willing to consider, and move forward with? And worse, what if my doctors and I are missing something serious. Something that needs to be figured out, and something that can have serious consequences long term. After you’ve been diagnosed with an aggressive form of breast cancer, a disease that is incurable once it spreads – your ignorance to these types of bad luck situations is kind of taken from you. Every once in a while my paranoia sets in that something is REALLY wrong, and no one is even trying to help me.
Because that’s how I feel. I feel like my doctors aren’t even trying to help me anymore. They try to figure it out, and when their initial guesses don’t pan out they refer me to someone else. Once I go through it all again with the new doctor, and they can’t figure it out, the process repeats itself again and again until today. Still now. Here I go again I think, every time a doctor starts to explain to me that they just don’t know if they’re the one who can help me. Where is the effort? What would they do if it was their loved one in my shoes? Would they try a little harder, and think outside the box? I can feel it happen when a doctor gives up. And every time it happens I feel myself begin to give up too.
I have to WORK at not giving up. I have to work at picking myself up every single morning, and doing it all over again – with a smile on my face and a certain zest for life that I am determined to keep. Life is worth fighting for, and life without pain is something I’ve been fighting for pretty much since I heard ‘it’s cancer’ almost three full years ago. I get tired of it all the time, for sure. I get discouraged, sad, angry, frustrated and scared weekly, and maybe even daily. My brain is always thinking and analyzing, I’m always dissecting every little thing my body does or feels. That is something that’s become normal for me, but I know it isn’t normal, and I wish I knew what it felt like to use my brain energy for other things. If this is me keeping my life together with all of this in my head, imagine what I could be capable of if I could just let it all go.
I want to let it all go. I really do. But how do I make a decision about what to do next? It doesn’t feel right to have a surgery with no physical evidence that BII is my problem. It especially doesn’t feel right to move forward with something that eight doctors – EIGHT – have told me isn’t even a proven thing. One doctor said it was the problem, and he’s basing it on the hundreds of patients he’s seen with BII in the past few years alone – which is hundreds of surgeries that he’s performed successfully and those patients afterwards felt amazing, and would tell you that it was without a doubt the implants that were causing all their problems. That is something worth noting, I get it, and I want it to be the answer because it is at least that – AN ANSWER… but it’s still really hard to make the call when there doesn’t seem to be anything even close to a consensus on the subject.
So what do I do. Seriously, what do I do? I can’t trust my gut, it’s been hijacked by everything I’ve been through. I am at least rational enough to know that, and to know that it’s hard to make a decision without letting my emotions get involved, which is basically impossible when we’re talking about amputating my breasts – or what look like breasts – for good. I’m 36 years old, and maybe I’m not supposed to care, but I do. It’s a huge fucking deal, it’s something I’ll have to live with for the rest of my life. It isn’t just aesthetic or what I look like in clothes – it’s a part of who I am, it’s confidence, self esteem, femininity, and function. It’s being able to wear a sports bra without it riding up. And before any of my small breasted friends think ‘I’ve been flat for years!’ please stop – I know you have good intentions, but it is absolutely – most definitely – NOT the same thing. I’m sorry for yelling.
Losing my reconstructed breasts feels like I’m having a mastectomy again. In fact, it’s worse, because this time it’s permanent. The first time, I was told I’d be good as new when it was all over – better even – which is a problem that can be saved for another day… But the point is I didn’t have to worry about coming out of this feeling much different. Now, I will be feeling many different things, and as strong as I am, and rational as I can be, it’ll be one of the most emotional experiences of my life and it’s going to take work to get through it. I’ll admit it, because so many women before me have admitted it and it helps me know what I’m in for, even though you don’t know until you know.
I don’t have a plan yet. First, I need to get off pain killers to really know what I’m dealing with here – I won’t make it until I experience these symptoms without any kind of altered pain. Maybe it’s better? Maybe it’s worse… All I know is that after prolonged use of painkillers you really can’t trust your body’s pain receptors properly. Or at least that’s what google says. Second, I haven’t exhausted all of my options. I am waiting on a call from my family doctor to get referred to a new specialist. I need someone with fresh eyes, maybe someone who doesn’t know my health history and maybe someone who is willing to look at everything together and can connect some dots that all my separate specialists haven’t thought of.
I’ve done homeopathy, reiki, and other alternative treatments. I’m seeing a naturopath who comes highly recommended in the coming weeks. I’ve been in therapy, done spiritual work and even strongly considered the idea that this was all in my head. I thought maybe I’m creating this, or maybe this is a thing that happens to people after surviving a near-miss or maybe I had unknown deep emotional trauma that was creating physical symptoms. No, no and no. What I’m trying to say here is that I am really trying to objectively look at my situation and consider everything. But I’m not a doctor and I’m certainly not qualified or equipped to solve this on my own.
You only live once. And being present in the moment is really all you have. I am very good at being present in the moment because it’s something I have been practicing most of my life – first unintentionally, and then very intentionally. I am very happy every day, and I enjoy doing all the things with my kids, my family and my friends. I joke, I post on social media, I have other things to do and to focus on. I help take care of others and I do what I can to be there for anyone who is going through something hard. I work out – not the way I want, and not the way I used to, but I do what I can when I can. I teach fitness classes and personally train clients, and I enjoy being a seasoned fitness professional. I’m currently enrolled in a program to become an internationally accredited life coach so I can really dive deeper into helping those with health issues and challenges – because that seems to be something I’ve become specialized in lately, and it’s giving me new purpose in my work. It’s something I’m looking forward to so much. As I navigate through my stuff, I hope to be able to successfully help others do the exact same thing.
What does the future hold for me? I don’t know. I’ve always wanted an unconventional and uncommon life… I guess I should have clarified exactly what that meant. But the truth is that everything I’ve ever wanted for myself I have made happen. And figuring this out, moving forward, and maybe even enjoying a pain free and healthy existence is something I can make happen too. One day at a time, with gratitude and persistence – I’ll get there. And I guess all that will be left will be to figure out what to wear…