20 Sep 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.