We’re here for a good time, not an easy time

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. 

A shot in the dark

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! 

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)

 

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… 

Some comebacks take longer than others

It’s been a while since I’ve written in detail about what’s been going on in my world, and because I don’t believe in wasting time by dancing around anything delicately, I’m going to go ahead and just hit you with the headline – I am not technically ok.

I’ve been hesitant to share publicly because to be honest even I was becoming tired of hearing myself talk about all the health challenges I’m constantly facing. Plus, retreating into a quieter and smaller social media and ‘I’m an open book’ existence for a while felt good. I needed the break to deal with the things and gather the thoughts.

But as I think about entering the fourth quarter of this year, I can’t help but think about who else might be struggling out there. Are you struggling? So many of us are quietly dealing with our own shit storms, and I know how incredibly lonely that can be. You don’t have to be experiencing exactly what I’m experiencing to relate – you just have to be a human dealing with the hard human things. If you’re one of those humans, you have my empathy.

So, what’s the deal with me? I’ll be writing in more detail in the weeks to come, and the full stories will be available on my website. You can click on the link in my profile if you’re interested in more – and if you’re one of those humans who are also currently dealing with something hard, please send me a message – I’d love to hear from you.

I haven’t been feeling well for as long as I can remember – and I always had an explanation for it, starting with the fact that I was in cancer treatment, I just finished cancer treatment, this is probably just long-lasting effects from cancer treatment… you get the picture. I had reconstructive surgeries with complications, infections requiring serious treatments, I’m immunosuppressed due to my lifelong treatment for my Ulcerative Colitis, I’m a busy mom… I’m a working fitness professional… I slept wrong… it must be the weather… I was running out of things to blame.

My main problem is pain. No pain, no gain they say. But the gain part has been way harder to achieve then I ever expected. When was my comeback going to happen?? The comeback is what I’ve had my eye on this whole time, there is always a comeback. The bigger the setback the stronger the comeback – right?! Isn’t that a quote I shared on this account a couple years ago? Yes. Yes that was me, an eternal optimist. I still am, I’ll get my comeback – this is my comeback, I guess… I just suppose some comebacks take longer than others.

Every single day my bones ache, if I let it get bad my joints will also begin to ache. I feel fatigue, malaise, headachy, and overall unwell. I describe it to others that it’s kind of like what it feels like when you have the flu, or an infection. My back is a problem. The daily back pain is getting to the point that this body feels like it’s 100 years old and even the simpler things like sitting down while I write this story is becoming incredibly difficult. I’ve been managing my pain with medications and physio, osteopathy and myofascial release sessions. My schedule is full of doctor appointments, diagnostic tests, treatments and follow ups.

Now, what you see on social media is real. I’ve been sharing some happy moments, some smiling pictures – because I’m also incredibly happy and enjoying life the way I know how – to the fullest. Dealing with these kinds of setbacks and challenges have always fueled my determination to propel forward and reinvent the way ‘sick people’ live their lives. After all, I have an inflated understanding of how precious our health is. And how precious life is.

I am also hyper aware that time is quite literally the only thing that matters, because it is one of the only things that we can’t manipulate – time ticks by no matter how you live your life, and more specifically time ticks by whether your back hurts or not. You must do everything you can to make the most of your time. It’s a daunting task I know, but I can’t think of a more worth while one.

My kids will always have a fun mom. My husband will have an energetic, charming and attractive wife. My friends will always get my full attention and support, and I’ll always strive to be the life of the party! Ha. My family will always get my good mood for the important moments. My clients will always get maximum effort with their fitness training and life coaching. My business will become a bigger part of my life. I will be who I want to be and do what I want to do.

At least that’s my intention, and I think I’ve been doing a pretty good job so far. I’m feeling something in the air, a certain renewed energy to continue the quest for an above average life on this very loooooong comeback, and to help others along the way. That’s the purpose in all of this, isn’t it? To be human, with humans, for humans. We’re so lucky to be human, on this beautiful earth. I will continue to live every day with that on my mind. Gratitude and optimism wins, every single time.

And listen, I know it isn’t always rainbows and fireflies – and I can assure you it isn’t. But I’ll save that for another day. For now, I’ll stop there. Thank you for reading.

Beach & Blog

My friends, I realize I have been MIA for many weeks now… and I blame chemo. And cancer.

 

I’m basically playing all of the cards I have to play just because I can! I quite simply got caught up with everything that was happening and this blog took a backseat.

 

But I am back.

 

I’m back because people have been asking me about what’s going on, people have been asking me if I’m still blogging and people have been giving me really positive feedback on how I’ve been sharing my journey so far – so I really want to keep it going!

 

Thank you all for the positive feedback, encouragement and support.

 

Now, as you can see, I had the opportunity to get away six months into my cancer treatment, and it was an absolute gift.

 

I am feeling so grateful for so much in my life, and it is important to focus on all of those things as often as I can.

 

I’m grateful for my friends who made this trip happen; I know what kind of effort and planning it took to get it done!

 

I’m grateful for science, because it’s the reason why I’ll be ok at the end of all this.

 

I’m grateful for what my body is capable of, and that health and fitness has made a massive difference in my experience so far.

 

And finally I’m grateful for ALL of the support I get online, in person, from friends, from family, and from total strangers – all of it. So, thank you.

 

 

The roller coaster

Yesterday morning I woke up in a bad mood. I woke up with a pretty loud and negative inner dialogue and I know why. My third round of chemo was that afternoon and I was out of time. Here is a quick glimpse into my brain, and yes this is meant to come off sounding like two 3 year old children are arguing….

 

‘Hey man, you’re in a shitty mood.’

 

‘No I’m not.’

 

‘Yes you are and you know why.’

 

‘No I’m not and whatever, bro.’

 

‘You have chemo later today and there is no way that isn’t the reason.’

 

‘I don’t care about chemo…. You have chemo…’

 

And so on, and so forth. One of the biggest pieces of feedback I get from social media engagement, blog responses, and in conversations with people is about how positive I am. I’m able to make people laugh, not let it get to me, take it all on and continue to live my life as normally as possible. It’s all true, that is me and that is exactly what I want people to understand about me.

 

But.

 

There is some creeping negativity that tends to show it’s face every once in a while, and especially on mornings like today. I feel like I’m out of time again. I just started to feel better, and I have to go back to feeling sick, and being limited. Those who know me the best, know that I seriously don’t like being limited, I don’t like feeling sick, and I don’t like it when things prevent me from being my happy, energetic and positive self.

 

I woke up feeling overwhelmed by the housework that is going to pile up, the laundry still needs to be done, the kids are always making messes, I paid all the bills, oh yeah I’m not working, I don’t have the energy to do my job properly, I haven’t exercised regularly in a billion years, and then I see my bald reflection in the window…. Yikes.

 

That happened. I said yikes…

 

I know we all have bad mornings, or bad moments… But don’t let it become a bad day, a bad week or a bad season! I think it is really important to explain that I also have negative feelings, thoughts and moments too. It’s understandable, and completely human. The whole ‘no one actually fucking gets it’ thought will pop in my mind, and in the same minute I rebuttal myself with ‘you’re fine, it’s not their fault they don’t get it and everyone has their own shit…’ Seriously, they say it’s an emotional roller coaster because it is. And that’s ok. Feel it, live it, learn from it, turn it into something positive and good.

Shred 10

You’ve seen me talk about it, post about it, participate in it, and many others have joined me in the fun as well. Of course in addition to the tens of thousands of others who swear by it as well!

 

Is it a cult? Maybe. Is it dangerous. Absolutely. Is it worth looking into? That can be answered with another question, like do I like wine? And I was joking about the dangerous cult thing, unless that’s what you’re into.

 

The Shred 10 is simply a 10 day kick start to a healthier lifestyle program, that includes 10 days of kicking the habits that don’t serve you, and flooding your body with whole food nutrition. The objective to feel great, lose some weight and create healthier habits that will serve you in the long term. Like for life.

 

10 days people. It’s 10 days. It is not long, but it’s amazing what can happen in that time.

 

For example, if I can get through one weekend without wine (wine on weekends is my weakness – shocking) then it’s easier for me to make other healthier decisions. I go on a streak, and when I decide to indulge it is no big deal and doesn’t derail any progress I’m making.

 

Now for some people the difficult thing to give up for 10 days is caffeine, and for some people it’s hard to avoid refined carbs or gluten… and for others the hardest part is cutting back on dairy. We all have our thing. The best part about giving up some difficult to give up habits, is that you realize you don’t need them as much as you thought.

 

And then do you know what the EASY PART IS?? Getting dressed after 10 days on this program. Looking in the mirror is easier, being naked is easier, getting ready is easier and literally everything is easier because you feel so much better.

 

After the ten days is up, you’ll aim to continue the healthy habits to the best of your ability. And before you jump to conclusions and think that this sounds complicated – picture this:

 

Eat well most of the time, try to exercise most days, and work on things that make you happy at least a couple times a week for your mental and emotional health. No counting, no measuring, no points, no calculating, no diets, nothing. Focus on your mind and body. Trust me, this is the way to live.

 

It’s so easy, some would just call it normal life………. Wink wink.

 

So, this is how I live healthier. This is how my friends and colleagues all maintain their healthier lifestyles… and should you ever want more information I have it for you.

 

But my emotions taste so good…

Let me tell you, I have been eating my emotions for months now.  And although the emotional eating streak was fun… it’s time to get back to what makes me feel good – and that is feeling good.

 

Before you say ‘Lindsy, now is not the time to worry about what you’re eating and how much you weigh’’ – I want to tell you that it is actually the exact perfect time for me to do that. And I’ll tell you why.

 

First things first, I need to admit to myself where I am. So, since the beginning of November I have gained 10lbs… ok 12lbs. 13 – does it matter?! Oh wait that’s the point, to be honest, it’s 13lbs. That may not seem like a lot to some of you, and it may seem like a shit ton to others.

 

For me though, it is the exact amount of weight I worked my ass off (literally) to get rid of a long time ago. I always hovered around a number, and then one day with a few habit changes, the number changed, and it hovered at a much better place. It is no longer in that place. I need to do something about it before it gets even more difficult to come back when this is all over.

 

And this is what’s important, the reason why now is the best time to worry about what I’m eating.

 

  1. I can’t do much moving. I used to rely on exercise to be able to eat a lot of food, all day long. The right food yes, but still – a lot. Exercises builds a strong body and burns energy. If I can’t exercise much then I need to be especially focused on my nutrition.
  2. My body needs fuel that will strengthen it, not weaken it.
  3. Too much inflammation. All over. Everywhere. The chemo is literally poison in my body and it makes me puffy. My body needs food that will not cause more inflammation. Check.

 

So I am up against a lot right now. Chemo doesn’t make it easy to feel good about yourself both inside and out. I plan to do some positive emotional eating, and do you know what that is? Eat means eating better so you feel better in general, and you might lose some weight which feels good, and you gain confidence which feels hella good. All in all: GOOD.

 

Right now I need to do whatever I need to do to feel comfortable in my own skin. Right now, I need to focus and take care of me, and do exactly what the happy, fit me used to do – which is live pretty much the same life, but with less take out, pizza and carbs.

Chemo makes you hotter, right?

I’m a visual person, so naturally when I needed to get some ideas on how I might try to look as normal as possible during my chemo treatment I went to my fav app – Pinterest. I knew I was going to lose my hair, I knew I’d need a wig, and I knew I’d need to learn how to do makeup properly, at the age of 33. I also knew, my regular bikini style wouldn’t suffice during radiation so I needed to find a proper replacement.

 

“Platinum blonde hair extensions”

“Platinum blonde hair with a touque”

“Blonde curly hair in hat”

 

These were my first searches. I mean, you all know how much I love a good fake blonde look, in fact many of you have probably heard me admit that I’m ‘blonderexic’ – a self diagnosis where I feel like I’m never quite blonde enough… so here is a chance I can make the most out of a difficult situation and find a head of hair that is definitely not possible in a natural way for me, and have fun with it.

 

“Makeup tutorial for chemo patients”

 

Fuck that noise. Too real. New search. ASAP.

 

“Heavy eyeliner tutorials”

“Dramatic makeup for blondes”

“Mimic fake lashes with eyeliner”

“Eyebrow microblading”

 

These searches were a little nicer, and there were some pretty beautiful make up examples. If only I could be as effortless as them…. At least I had the visual. That’s all I needed, a visual to see that it’s possible to look like a human, and maybe even attractive during chemo.

 

Finally.

 

“Rashguard bikini”

“Cropped rashguard”

 

I am going to have to start radiation in the spring, and it’s going to last until early July. I am a SUMMER human. Summer is my thing. The only good thing about getting Cancer when I did – was that my surgery and treatment somehow managed to avoid the summer season. I’m grateful, because that is honestly the best timing ever.

 

But – during radiation my skin is going to be very sensitive to sunlight and any kind of suncare products. This sensitivity will also likely span the majority of the summer after my treatments are all over. So I’ll need to cover up. I found some great options online, and even though I’m not exactly twinning with all of the models – I’ll find a way to pull it off.

 

The best joke is, I saved a few pictures on my phone. This would be my visual, my goal to help me get to my treatments and knowing that maybe I’d get out of this looking as normal as possible, maybe even…dare I say… attractive?! It might seem shallow, but shit, when you don’t feel like you look good it can really mess with your day. I don’t want people to see Cancer when they see me, I want them to see me, and my effortless beauty! Hahahaha… that’s a thing. Right?

 

I showed my husband, he said “so basically you want to get hotter during chemo”. I laughed my ass off – because DUH YES. Yes that is what I’m saying. Is that too much to ask?

 

When I asked my GF to take a look at what my ‘chemo goals’ were she was much more supportive haha. I showed a couple others when they asked what kind of wigs I’d be looking for. All my ladies out there just get it. They’re all very good friends for knowing when they NEED To LIE to me lol. I appreciate it. More then you know.

 

          

 

I posted the photos so you guys could all see the inner workings of my brain. The one of Kingsley is my CONFIDENCE GOAL picture, she just knows how to rock whatever she’s got! I hope you laugh, or at least smile, and understand that visualizing this shit is what works – or at least we’ll see won’t we? Wish me luck!