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. 

 

Does this MRI go with my surgery? (Part 3 of 3)

So I went ahead and posted on my social media, letting my followers (and friends and family members) know that I’d be taking on another surgery. I added some kind of inspirational message – like I do – you’re welcome – and of course received an amazing outpouring of support. I am always so grateful.

 

I didn’t include the whole ‘I might have brain cancer’ angle, because I didn’t want it to explode into something more intense… my assumption is that most people made the assumption that it was something breast cancer patients normally do, to make sure the breast cancer was no longer in the breasts. Whatever they thought, I felt that I had to let people in on the surgery and MRI in general because it would be obvious when my physical appearance changed again, and that I was recovering from something. Or at least I thought this at the time, I realize now that my life didn’t appear to skip a beat.

 

The surgery was a complete success. It was quick, WAY less painful waking up, I went home the same day and had a much smaller incision site then I expected. It was such a small deal in comparison to everything else I had been through, why in the actual F didn’t I do this sooner? But, I didn’t know. Now I know.

 

I was back at the hospital the very next day for my MRI, which was also relatively quick and painless thanks to the subscription painkillers and really great care I always get in the MRI department. So now, all I had to do was wait for the results and this whole thing could be put behind me.

 

Or it’ll ruin my life.

 

Either or.

 

No pressure or anything.

 

I had a routine follow up appointment booked two days later, along with my usual Herceptin treatment in the chemo suite. Cancer life goes on friends…

 

I went into my follow up appointment expecting the usual things, and I knew I wouldn’t have my results yet because it was too soon. And that’s what I told all of my very impatient, yet loving friends and family who knew the whole story about what was going on. The nurse went over all my symptoms, took notes, asked questions and did her thing. Then she was reading off her computer screen and told me my MRI was clear, and continued to ask how is Herceptin doing…

 

Wait.

 

Pardon?

 

Did she just casually tell me between two other unimportant sentences that I didn’t have brain cancer?

 

I mean cool but, wait maybe she didn’t say that.

 

I interrupted her, and asked her to say that again, to make sure I heard right. The nurse clearly had no idea of the history leading up to this MRI, and didn’t think to go over it as if it was an important piece of information at all. It’s not her fault, I’m not saying it’s bad – it was just funny how unaware she was of the whole production.

 

So friends, point is my brain was a-ok.

 

Thank fuck.

 

I apologize for swearing, but sometimes you have to swear to really get your point across. I was so thankful, so relieved and sooooo incredibly ready to move the F on. With my new titties.

 

Which by the way, my new titties were smaller, more natural, a little odd looking, but overall much more comfortable. That in itself was a huge win for me. I still have another reconstructive surgery ahead of me in a few months time, to allow for the proper recovery from radiation, but until then I’ll be much more comfortable.

 

Side note – what once were boobs, became breasts with a cancer diagnosis, and then finally morphed into titties since they’re fake as fake can get. No breast tissue, no nipples, no sensations and no more of what they used to be.

 

They’re better. Because they’re not trying to kill me anymore, and well, I’m pretty happy with that.

More surgery, why the F not (Part 2 of 3)

Where was I? Oh yes, if the symptoms got worse, then it’s something we needed to take action on. My doctor also booked me to see a neurologist to get a second opinion.

 

Over the next few weeks I determined that the headaches weren’t getting better. The neurologist said he was pretty certain I was getting migraines (all day, every day) but he couldn’t be certain without an MRI. He wrote me a prescription to see if that would help, but those drugs typically take up to a month to have the proper effects.

 

I went back and forth on my decision to have surgery to get an MRI every. single. day. It became all consuming, even though I’d never admit that to myself, and in turn was causing me stress, on top of typical and atypical stress that was already a regular part of my routine.

 

Everyone I let in on the situation told me they’d get the MRI if they were me. I knew I wanted it, but felt bad for wanting it for some reason. It seemed silly to make such a big deal out of something I knew wouldn’t be anything in the end – is what I kept telling myself.

 

But.

 

What if.

 

I won’t even get into the back and forth I was doing in my head, because it was intense. But we as a people are not perfect – our ability to describe symptoms, describe what we’re physically feeling and to interpret how other people describe it all is not perfect. Technology is the only thing you can depend on, which in this case was an MRI.

 

So I made an appointment to see my surgeon to get his take on everything, encouraged by my oncologist.

 

Don’t forget – I am currently in radiation every single day while this is all going on…. So I’m a little preoccupied and busy!

 

That appointment set the stage for how quickly the rest of it would go down. We determined that I needed to get the surgery, I needed to have an MRI and I needed to put this to rest once and for all. It was obvious that it was stealing my peace and I needed it back. After all, I’m not being ridiculous, I had cancer, I’m in cancer treatment and I have symptoms.

 

The surgery wasn’t going to be a huge deal, and he’d fit me in right before the MRI appointment – whenever that was set. I appreciated the blunt truth and willingness to get this all done for me as soon as possible.

So I set the MRI appointment in motion, and got one in 12 days. So my surgery was booked for 10 days. Or something like that… it was less than 2 weeks for sure, which felt incredibly fast. But I could already feel the relief – not from headaches or other symptoms – but from the weight that had been weighing my down for months.

 

I spent the next week and a half exercising my butt off (I knew I’d need to take it easy again after surgery), cleaning and organizing our house (assuming I’d be out of commission for a while again), and when I told my friends and family about everything they were all ready to rally behind me again for any type of help I’d need.

 

Here I go again friends.

 

I knew it wouldn’t be nearly as intense as the last surgery, but I was nervous. Going under isn’t something I enjoy and I have to actively put my mind somewhere else when the nervousness sets in. I was also nervous about recovering, and any complications that might come up. We were putting a smaller implant into a space that was just home to a larger implant of different material – I knew it would be weird, for lack of a better word.

 

My husband booked off work, the kids were sent to grandma and grandpa’s house thanks to grandma also booking off work – and everyone was ready to help.

To operate or not to operate (Part 1 of 3)

The details behind my random last minute surgery a couple weeks ago are something I didn’t share very openly with people. Those who were closest to me knew what was going on, but other then that I didn’t share much.

 

This might seem like it’s not a big deal to some people – who in their right mind shares everything with everyone?! Well, me. I have been sharing all sorts of details with anyone who wanted to know ever since this whole journey began!

 

I’m mostly referring to social media. I’m also referring to oversharing with friends, oversharing with clients and always being the go-to person if anyone else had questions or needed guidance if they were about to go through a similar experience.

 

It’s one of my things, it’s what I do.

 

This was something I couldn’t share openly, for a couple of reasons. First, I didn’t want to make a big deal out of something that would likely not end up being a big deal. Second, I was starting to get tired of narrating my whole life on social media for everyone to read. I appreciate all of the support that comes from this sharing, but if I was getting kind of tired of it, then that probably meant lots of other people were getting tired of it too. Or at least that was the story I was beginning to build up in my head.

 

I know – who cares what other people think. It is so easy to say that, BUT I do care. I feel like am not supposed to admit that, but I do. So every once in a while it takes a little extra work, a little extra courage and a little extra wine to get back to what I know deep down is helping, and that is sharing to help others.

 

So here is more sharing.

 

HEADACHES. Let’s talk about being in my head about things – quite literally and figuratively. I started experiencing headaches before chemo was over, but along with all the other effects that come with it I brushed it off as part of the process, and knew it was temporary and would be over soon.

 

BLURRED VISION. I have glasses now. And it wasn’t until my second last chemo treatment that I realized my vision was no longer sharp, in fact there were times where I straight up could not see properly. It was consistently inconsistent – sometimes it was perfectly fine, and other times it was sketchy when I was driving… Again, it must have been chemo, right? Sure.

 

TINGLING. I was dealing with pins and needles, or numbness in my arms, legs, hands and feet – but mostly on one side of my body. This wasn’t as severe or noticeable, but it was there, and became more noticeable as time went on.

 

NAUSEA. I didn’t feel very well yet, but maybe it was the radiation… Oh wait, nope, it’s not the radiation according to my oncologist… so what is it? Why? It made no sense, except OBVIOUSLY it was the chemo still… sure, again.

 

But chemo had been over for a while now, and the symptoms weren’t going away. I finally remembered to mention it to my doctor and she immediately took it very seriously. In fact she was grilling me on my symptoms, which took me by surprise. She booked an MRI for my brain, and that was that.

 

But then I got a call explaining that they couldn’t give me an MRI because the expander (temporary implant) in my chest had metal in it, which made it impossible. My doctor was very frustrated by this, and then kindly began to go over her thinking process with me since I was still a little in the dark about what was really going on.

 

“Typically, for some reason that we don’t know yet, women with HER2 positive disease tend to experience metastasis to their brains – if it spreads.” Or something like that, I can’t trust my memory to the exact detail these days…

 

Oh.

 

Well fuck.

 

I see where this is going now. But I won’t think it, because no.

 

Her worry level seemed relatively low, but her desire to miss nothing and be on the safe side was the reason why I always felt like I was in such good hands. Plus my typical ‘don’t worry until you need to worry’ demeanour was kicking in, kind of like it did last year… you know, when they were testing a lump I found in my breast.

 

Yeah. You caught that too?

 

My innocence has been kind of ripped away from me on that one.

 

“When are you getting the expander out?” she asked. “Next year, in forever… like not anytime soon. Definitely not soon enough.” I explained. So now what.

 

I was booked for a CT scan, a similar but less detailed diagnostic tool to see if there was anything to worry about – and it came up clear. This was obviously a relief, but my doctor didn’t seem satisfied.

 

We decided I’d be on top of watching my symptoms, really focusing on the details of the headaches (which were every day, all day….) to determine if they were getting better. If they got better then it wasn’t cancer.

 

Oops, I slipped there and typed it out loud. Moving on.

Saying Tata to my tatas. (part 2)

I woke up from surgery in the most amount of pain I could ever imagine. Like ever. I vividly remember thinking that I’d give anything to give birth to a basketball because at least it would take my attention off the pain I was feeling in my chest. Something had to be wrong, why was I feeling all this, why weren’t they giving me more painkillers! It was next level.

 

I am a bit fuzzy on details, at least I’ll assume I am, but all I know is that I was PISSED. Someone, more drugs now. I explained how much pain I was in and I remember a doctor or nurse or someone asking me what kind of pain killer I wanted – like I cared – anythinnnnnnng! I was snappy, and angry… I couldn’t help it. I remember telling them I’m not normally an asshole, but that is just how much I was hurting. They get it, right? I definitely felt like I was being reasonable, good thing there is no video footage to show just how ridiculous I probably was…

 

After some of the pain subsided a little more, and I was in post op recovery long enough it was time to head to my room and recover there. I felt like it was forever, and I’m pretty sure it was. I asked for my husband a million times, and I knew I had a couple friends waiting too – I just needed to see someone I knew. But man, it was over. I was ok. It was over.

 

The DL on the surgery:

 

The general surgeon successfully removed all of the cancerous tumours and cells, and both breasts were removed entirely. I knew that some lymph nodes ended up being removed entirely – but it wasn’t until two days later that I learned it was 6 lymph nodes, which seemed like a lot. They hadn’t been biopsied yet so it would be almost 14 days before I learned if there were cancer cells or not. (Spoiler alert, all lymph nodes were considered negative for cancer, phew. However isolated tumour cells were found in one of the lymph nodes, which is one of the reasons why I’m doing chemo… that’s another story.)

 

My reconstruction plan had evolved over the few weeks leading up to surgery, and I’m thankful for that. My HER2 status meant I’d be doing radiation, which can permanently alter any immediate reconstruction effort.  At first I was told that no reconstruction was possible – which was upsetting for obvious reasons – so I was happy when my plastic surgeon told me he wanted to try it a different way.

 

I have a permanent and final gel implant in my left side – which will not be affected by radiation. On my right side I have an expander. It’s basically a temporary fluid filled bag with a port in it – which means a needle can be inserted into the implant through the port to add liquid or have liquid removed during the course of radiation, in anticipation of the skin retracting. This means that leading up to radiation the fluid will be added to make the left side bigger than the right – expanding the skin, and then during the course of radiation the fluid will be removed as needed, in order to save the skin from getting too thin as it retracts (and risking the implant becoming exposed, or failing in another way), and the expander, in theory, will end up the same size as the left.

 

Science. It’s cool.

 

The skin can continue to change and be affected by radiation for months and months after it’s complete, so my next surgery to replace the expander with a final implant won’t be until the very end of the year, at the earliest. So, fingers crossed the expander process goes well and surgery won’t have to be a huge complicated thing! But, I will definitely have to do the whole surgery thing again.

 

I’ll look forward to the operating room playlist.

Saying Tata to my tatas. (part 1)

Ah yes, the day I said goodbye to my tatas. What a day. My memory is still extremely vivid and full of details, so I figure why not let everyone in on what happened that day, and what the deal is now.

 

I’ve never had surgery before, so I was a little anxious about going under anaesthetic, and also about waking up with a permanently altered body… makes sense.

 

On the day of surgery I arrived at the hospital around 6am, with my husband, and was ready to just do what I had to do and go with the flow. One step at a time, they prepared me. I had to have a lymph node biopsied at the same time so I stopped in nuclear medicine first to be injected with two solutions in order to help them find the right lymph node – I was told it would be removed if it looked suspicious. But that’s all I was really told. Then I had my IV put in, and I waited around for a couple of hours until it was my turn.

             

 

I was visited by my plastic surgeon Dr. Omodele Ayani ahead of time. It felt pretty casual, cracking jokes as usual… And once it was my time someone led me to the operating room and I walked in and sat up on the table. I had two main surgeons – the general surgeon was responsible for the bilateral mastectomy (double mastectomy) and removing the cancer, and my plastic surgeon was responsible for the reconstruction process.

 

My plastic surgeon walked in to mark my body before surgery got under way, and I noticed he had a portable music speaker in his bag. Tunes, obviously. I was into it, but then I became instantly alarmed when he told me he’d be listening to John Legend’s Christmas album! Whoa whoa whoa. What. I told him that top 40 music was what I’d listen to… but hey I’m not the one with the sharp objects. The person with the sharp objects gets to choose the playlist. Check.

 

He started to mark my body for incisions as I sat on the table, so I  took the opportunity to make a joke about how my boobs looked before kids – and after kids.

 

It was obviously the appropriate thing to do.

 

Hey look, before kids *lift them up*

After kids *let them drop*

Before kids *lift them up*

After kids *let them drop*

 

That happened. I did that.

 

Friendly banter back and forth ensued… Fun with my tatas right until the very end!

 

So, now it was time to lay back and get the show on the road. Doctors and nurses were bustling around me getting ready. I was told it would be about a three hour surgery and that everything was going to be ok. Just as they were getting ready to put me under anaesthesia, I could hear my plastic surgeon ask ‘Hey who changed the music?!” because all of a sudden it was playing some typical top 40 hit. “Lindsy, did you put them up to this?!”. The mask was already on my mouth but I laughed, and denied it… although I’m sure no one could actually understand me. Then another doctor said he was the one who changed it. It was a pretty solid way for me to go under, because literally 3 seconds later, I was out.

 

I’ll never know exactly how much Christmas music was played, and that my friends, will haunt me until the end of time.