It’s been a year.

Lindsy Matthews, breast cancer

Oh hey friends, it’s been a minute I know. I don’t want to say I’ve been hiding… but I haven’t exactly been not NOT hiding. For the longest time I thought I just didn’t want to be out in the open for everyone to watch, talk about, and judge… But I realize now, a year into my new life as a stage four cancer patient, that it was my energy all along. I simply didn’t have the energy to share, explain, respond… be out ‘there’ in any capacity.

Now, I do. 

It all started when I had my cancer-discovering scans on January 3rd last year. We got the news on January 6th and our nightmare was confirmed on January 11th. I say ‘we’ and ‘our’ because my husband was experiencing it all with me. This was his nightmare too. 

Then came all the scans, tests, appointments, and planning sessions… All while having countless uncomfortable and sad conversations with my family and closest friends.

After a few weeks I decided to share my news publicly on social media, because in the past that’s what I did. I always received so much incredible support from friends, clients, acquaintances, friends of friends, colleagues, people I’ve met along the way, people who heard about me, people who shared a diagnosis with me… I always ALWAYS appreciated it so much. It always helped me feel gratitude and optimism along the way. But then the devastating discoveries kept coming. Discoveries that I haven’t shared publicly yet because it was too much. Too much for me. Too much for my children, and therefore too much to share publicly. 

So, I didn’t.

It wasn’t exactly the start to the year I had planned. But I’d handle it. I always handled it, and with genuine positivity. I was already talking my way through all the ways I was going to handle it with those closest to me. And how I was going to help others handle it. I knew I was in for it, but looking back now I’ll admit that I wasn’t ready for what was coming.

After ruling out a biopsy on any of my lesions (tumors) because they were too risky, we decided we’d have to start treatment with the assumption that I was dealing with the same subtype of breast cancer as before. Breast cancer is sneaky and incredibly good at mutating to different types in order to survive. The type of breast cancer dictates treatment options, and some have a lot more options than others. There are NO good breast cancers, but there was definitely a way for this to get worse for me. It wasn’t easy moving forward without knowing for sure, but time was ticking away and every day mattered.

Treatment began.

The decision was to start with radiation treatment. It was followed by six months and twenty-something chemo treatments, along with two targeted therapies for my assumed type of breast cancer, that I also received via infusions and a bone strengthening infusion. Whenever I had to tell my doctors about my treatment regimen it was met with wide eyes and a ‘wow, that’s a lot’ comment. Let me tell you – when doctors react like that, it’s not exactly settling.

I also had multiple procedures, a couple of hospitalizations due to chemo related complications or procedure related infections… and the scans never stopped. The radiation created problems for me – the kind of problems I was assured that less than 5% of patients experienced. Lucky me, again. Which created more tests, more scans, and even more of being monitored closely. 

Although I had also experienced many good signs along the way, it wasn’t until August that I got my first real break. My cancer was stable. STABLE. I remember being disappointed that it hadn’t disappeared… I had NED in my mind as the goal, which stands for no evidence of disease. But my doctors told me this was the best case scenario for me, with my specific lesions and my specific situation. They told me they won’t all go away, they’ll just stop growing and hopefully stop spreading. ‘Hopefully’… a seemingly innocent word that carries a lot of weight now. 

However – I WILL TAKE IT. We were thrilled. Relieved. Exhausted. Nervous of course…. But we’re absolutely ok with it. I was given the go ahead to go off of chemo for now, and continue with the targeted and bone therapies every 3 weeks as my maintenance treatment regimen. I was to have 4 different scans every three months – a different one every month, to make sure nothing would be missed. I felt like I could take a breath for the first time in a while… until I was told the first 6-12 months after chemo would be the most telling. I didn’t understand. I was stable, wasn’t this good? The vibe I was getting from my doctor wasn’t what I expected. 

It was good. Of course. But now it’s a matter of when my disease progresses. Not if, but when. Trust me, there was no ‘if’ anywhere to be found in her statement…. I know because I desperately searched for that word from my doctor. The way I always search for keywords, phrases and tone in all of my appointments.

There are always two conversations happening in my appointments – the one being said out loud, and the one that isn’t. 

If my cancer progresses in the first 6 months then we’re likely dealing with a new type of breast cancer (or multiple types) and it would be considered extremely aggressive. At that point a biopsy would be necessary and treatment changes would have to be made. If I made it to a year with no new progression, then it’s a sign that I’ll probably get to a few years on my current line of treatment. 

Ok, so I guess I don’t get to breathe just yet. Will I ever get to breathe again?

Currently, I’m breathing. I’ve had multiple scans since the summer and so far so good. I’m stable. I’ve held stable for 6 months, and I’m optimistic that I’ll continue to hold stable for a long time. I have monumental scans next month – and even though I don’t have any specific reasons to be worried, there will always be anxiety. Scanxiety. Every time I go in there I remember how easy it is to have your whole world turned upside down, again and again. Just like that.

It’s amazing how dependent I am on pure luck. LUCK. Because you can do everything right, and still have a cancer recurrence or progression. You can do everything wrong and stay stable or become NED, or be considered a survivor. What right and wrong even mean have always been up for debate too. Who even knows. All we can do is the best we can, with the knowledge and resources we have. 

For now, there it is. The story.

This story is lacking in a million details, but it’s simply impossible to get to it all in one written piece. So here is the start, the start of me getting my story out there, the beginning of beginning again. I have so much to say because I’ve learned so much this past year. There is so much that I believe is too important to keep to myself. I want to talk about perspective, toxic positivity, positivity, depression, anxiety, my prognosis, statistics, advocacy, breast implant illness, narcotics, stage four-ness, breast cancer awareness (true awareness), radical remission, palliative care, surgeries, treatment details, parenting, tough conversations, taking up hobbies, exercise, meditation, priorities, travel, how I feel, career, what’s next….

And be hilariously charming in the process – of course. 

 

My experience with cancer as a personal trainer + my favourite fitness-during-treatment hacks

As a personal trainer, a breast cancer diagnosis not only put my career on hold – it also changed my relationship with fitness and my body forever. In the beginning it was hard to accept the fact that the strength I’ve built and all of the hard work and progress I’ve made up until that point would ultimately be undone and it would be taking a back seat in my life for the foreseeable future. I know, it wasn’t what was important – because surviving was all that mattered – but it was something I had to work hard to accept.

 

For me, exercise helped me feel normal. It gave me purpose, it gave me coping mechanisms and it gave me a personal sense of power and freedom. This was something that was important to me, and this was something that I needed even more now that I was going through something incredibly challenging, and life altering. Who was I? How would this change me? Can I get out of this alive, and still be who I’ve always been? What if exercise makes it worse? What if exercise makes it better?

 

During conversations with my oncology team, exercise was always a topic I brought up in appointments and following their advice was something I took very seriously. One piece of advice has particularly stuck in my mind, still to this day. It was my mantra for a long time, and it’s still something I focus on when I need it.

 

“The more physical activity you do, the faster you’ll feel stronger and more like yourself.”

 

This advice is what helped me through the tougher times, and helped me be determined to stay strong, especially after every major part of treatment. Walking during chemo was a big win for me – I even managed a couple light jogs here and there when I was having a really good day. During radiation, stretching and basic resistance training exercises were highly beneficial for my body, and my mind. And after every surgery I took the recommended amount of weeks off, and then got professional help through physiotherapy to make sure I recovered safely and properly before getting into anything too heavy.

 

Whenever I experienced setbacks that landed me back in the hospital or some kind of treatment – which happened more than a couple times for me – I would figure out something that worked, like walking. There are always options, they just may change a lot during the course of your cancer treatment. And you will feel like you again, just a new you, a stronger you, and more determined you.

 

(Featured image was an outdoor Bootcamp class I lead during my radiation treatments, July 2019)

 

Try this! 

 

5-10 minutes of full body stretching

 

15 minute walk at a brisk, but comfortable pace for your level

 

3 sets of the following exercises:

10 body weight squats

20 body weight alternating lunges

10 push ups (modified standing against a wall, or from knees on floor)

20 crunches or sit ups

 

5-10 more minutes of full body stretching

 

Find this blog post at https://waroncancer.com/experiencing-cancer-as-a-personal-trainer/

Find more information on the War On Cancer website, and don’t forget to check out the War On Cancer social app!

Radiation Nation PT 3

The peak of the effects didn’t hit until after my last radiation treatment. It was weird, because on the one hand, I was very happy that it was over – but it was actually most definitely not over at all.

 

My skin was brutal. It felt like it was melting off me, and the tissue under it was getting extremely tight and ached. My temporary implant was popping out more then ever and it started to look even weirder then it did before!

 

   

 

My skin began to ‘open’, looked incredibly raw, and was extremely painful. Every movement I made hurt, sleeping on it was impossible and bathing became a whole production. It hurt when I sweat – which was nice because you know, SUMMER. It also hurt when my clothing brushed against it and I made every effort I could not to let my arm hang down casually because it was so uncomfortable.

 

Uncomfortable is putting it nicely.

 

     

 

It seems crazy, but I understand now why some people think radiation is worse than chemo. For two weeks I felt it, and for other people it is even worse – especially depending on the part of their body that is being radiated. I know people who missed more work with radiation then chemo, and the truth is I probably didn’t need to take on bootcamp (even just once a week!) but I had no clue it would get as hard as it did.

 

But, guess what.

 

My skin healed.

 

In fact, I still can’t believe how well it healed. It was crazy to see my skin go right back to normal, as if nothing happened. Howwwwwwwwwww.

 

I have heard all kinds of horror stories about how it’ll never be the same again, or how years later you can still feel it and see it. But not me. Like not one bit.  Okay, maybe just a little bit. BUT I feel incredibly lucky that my skin regenerated so well, and that it’s something I don’t have to see on a daily basis.

 

My temporary implant was incredibly tight, and had shifted upwards on my body… but that would be taken care of soon too -> that’s a story for a different blog post!

 

Moving forward, my beauty regimen has been taken up a notch. Who am I kidding, it’s been taken up about 100 notches! I never did much for my skin up until this point, as much as I’d hate to admit that. I didn’t take it seriously. From now on I’ll be all about the moisturizer… all over… all day… all the time…

 

Now please excuse me, I need to go moisturize.

Radiation wasn’t so rad PT 2

It felt like I was always at the Cancer Centre… because I was. I was there every day for radiation, once a week I met with my radiation oncologist to discuss how it was going and to treat any of the effects, I still had Herceptin every 3 weeks, had to do regular diagnostic testing, and was still dealing with the aftermath of my chemotherapy. Basically, life was super fun!

 

For the first few weeks, I barely felt any effects of the radiation. Yes, my skin started to look more and more red as time went on, as if I was getting a bad sunburn… but meh, manageable.

 

I had a few days where the fatigue was very strong. The technicians and doctors were constantly checking in on me about this, because it can be quite intense for some people. They say about 15% of patients have fatigue so strong it prevents them from being able to function normally. It is an immune response, where your body is kicked into overdrive to manage what’s going on… But overall, for me it wasn’t a big deal most of the time.

 

I was able to continue exercising, do life, raise kids, see friends, and all that fun stuff. I even started teaching bootcamp once a week again, just to get back on the field! It felt amazing to get out there and do my thing, feel normal and see some of my clients again after almost 7 months!

 

     

 

But then in the last two weeks things started to escalate, and my skin started to change – a lot. Every day I could feel it getting tighter and tighter around my temporary implant… and my skin started to bubble, scab and get to an almost purple colour. You could see the rectangle shape where the radiation entered my body, and there was even a rectangle on my upper back where the beam came in at a different angle.

 

     

 

This is when I had to get really serious about how I took care of the area, and it began to slow me down.

Radiation Therapy PT 1

Radiation Therapy. That was a ride. I started radiation exactly one month after my last chemo treatment, and I did it every single day for 25 days in a row (minus weekends, and holidays).

 

So that means for 25 days I had to arrange childcare, go to the Cancer centre, check in, get changed, wait in a waiting room, get called, get taken to the radiation room, lie down, positioned meticulously, readjusted, and sit absolutely still while the machine buzzed around me. Finish, change, get my schedule for the next day, and so on….

 

All in all, I spent 15-20 minutes in the actual room, and was only being ‘zapped’ for a total of 2-3 minutes.

 

The very first radiation treatment was longer, because the technicians had to find just the right spot and measure it as specifically as possible. They even TATTOO little dots on your chest and side to make sure the lasers are in the exact same spot every single day – you can’t trust marker or pen! These tattoos are permanent, but they’re so small they look like a freckle.

 

    

 

During the treatment you don’t feel anything at all – other than the feeling of your arms falling asleep while they’re positioned above your head. You stare at the machine above you, listen to the music playing in the background and try your best to think happy thoughts!

 

Happy thoughts. Like anything other than the fact that you’re currently being radiated!

 

Ha.

What do you mean I haven’t blogged in months?!

This is my first blog post in MONTHS. What took so long? I blame Cancer. I can do that, because you know, Cancer. I’ll use it when I can, it’s the least I can get from this whole ordeal, am I right? I dare you to challenge me… I had Cancer.

 

Key word right there, did you catch it? HAD. I HAD Cancer. I can proudly say this because after months and months, and all the treatments/tests/surgeries under the sun… I have confirmed that I no longer have any Cancer in my body. It is a pretty epic thing to feel, say out loud and explain.

 

What’s crazier is that it still doesn’t feel real. It still doesn’t feel like this whole thing happened to me.

 

I am still having targeted hormone therapy, every three weeks until April 2020, and I still have another final reconstructive surgery ahead of me sometime in the winter next year. This is just to prevent a recurrence of the Cancer as much as we can. Overall, no more cancer.

 

Bam.

 

Moving the EFF on. But what exactly does that even mean? People always say ‘time to move on’, ‘now you can move on’, and ‘Yay it’s finally over for you’. Is it though? Will it ever feel over? Is it possible to move on? No. Definitely no. The people who truly know what I mean are the people who have also had Cancer themselves.

 

The Cancer is constantly on my mind. Like, literally almost every single thought that goes through mind is somehow connected to Cancer in some way. Maybe it’ll fade over time, but right now it is still very present. Here are some examples:

 

Thought -> Cancer version

 

I’m making Kingsley’s lunch for her first day of school -> I’m tired, probably because of the Cancer related medication I’m taking

 

Today is the first day of school! -> Today is the first day of school, I can’t believe this time last year I was about to find out I had Cancer.

 

Seeing all my school mom friends -> I wonder what they think about my hair, I wonder if they remember I’m the mom that got Cancer?

 

I’m going to Starbucks to write my first blog post in months -> I wonder if the people beside my think I had chemo because I have short hair. The barista smiled at me sympathetically, I wonder if it’s because she thinks I had Cancer. I’m drinking a black Americano, I wonder if my heart will palpitate because I had my Herceptin treatment last week and sometimes caffeine effects that. I’m writing about Cancer. I feel like all I talk about is Cancer…

 

And so on.

 

And so forth.

 

I think you get it.

 

Point is, I’m hoping that this fades with time, because my brain hurts. Literally and figuratively… Maybe it’s because I think ALL the time. What’s next, what do I do now? What is life after Cancer going to be?

 

I guess I’ll find out.