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. 

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.