Quit it and hit it

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)


It’s the perspective for me

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. 

Breast Implant Illness & an impossible decision

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…