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My one year anniversary of my diagnosis

12:43pm. Tuesday, April 21st 2015

How I’m feeling: A little disheartened. I had written the start of this post on Friday and I can no longer find it. While I stopped writing only a couple of paragraphs in, there was so much heart put in to it. I had stopped because I felt overwhelmed. There’s a lot of heart and then some put in to all of my posts. Often it takes me hours to write one because every word that I get down on here, I dig deep to stare the situation and what I’m feeling dead straight in the eye, acknowledge and just feel it out. I end each post exhausted but a lot more clear-headed and healthier. On Friday, there was a big cloud of frustration and worry hovering over me – but I’m not going to try to remember how that was like just so that I can replicate whatever I wrote. It was in the past and it’s gone. It’s not something I’m going to choose to re-live because it will effectively pull me out of this moment right here right now. In fact, I already started feeling a glimmer of it as I started writing this post. I did after all start this post with “A little disheartened” didn’t I? While the reason(s) I felt frustration and worry on Friday is still present and will have to be dealt with, I’m going to flick the feelings associated with them away right now so that I can write this in the present. Plus, this way I can work through them with a clearer mind. 

It’s been a while! It hasn’t been easy to think about everything I have experienced over the year. But my body and mind won’t let be escape it even if I tried. It’s too smart to let me do so 🙂

An “Anniversary” is a day that commemorates a past event that occurred on the same date of the year as the initial event. It’s a celebration. And so, you could argue that using the word “anniversary” is a little odd in this case. Being diagnosed with the big bad C and the war comes with it is a terrible thing. It’s something I wouldn’t wish on even my worst enemies (if I had them). But I’d argue back (and likely win) and say that it is indeed a celebration. It is at least in the way I choose to perceive it. While I would not choose to have experienced the year I did again – there is no way I would not take it back. There was a (net) positive outcome from my 2014 – and it still continues to be the case. As awful as it was, I’ve come out of this with so much more than I ever had before. I have shed a bunch of layers and grown new ones. I’ve helplessly fallen hard in to very dark, deep and lonely holes and have celebrated triumphant moments with many. For those of you whom have been following along, you’ve witnessed some of it and from what I have been told by friends, family and strangers from all over the world, you have learned a whole lot as well. But here’s the thing: this right here – every word you are reading, every audio recording you have listened to and every video you have watched, I have never once done this for you. To this day, I do this for me. I don’t do this for an audience. I don’t live for an audience. Doing so is something I never will allow myself to do. And neither should you.

On Friday, I met up with a friend – and as tears rolled down her face as she explained to me that she has always considered me to be her “green light” even before my journey through this war. I thought to myself “I really don’t know how I always get myself here. Every single time this happens, I think to myself ‘What did I do this time?'”

To not put any intention towards teaching, inspiring others or moving mountains – but know you are somehow doing so by just….living…is an interesting feeling. I just live, that’s all. I choose to live. And while over the past year there have been times when I really had to literally try and push to do so – I did. Today, even though I’m thankfully breathing I don’t let “living” get away from me.

Often, I’m asked by friends, family, strangers and media what the biggest lessons I learned were. The truth is that there are so many – and I think my answers are different each time. If you’ve been following along from the very start – I’m sure you can attest to this. Sometimes I feel like saying “You just had to be there” or “Sift through my blog”. There isn’t one particle within or around me that has not shifted as a result of all of this and I’ve tried my best to document those changes as they happened throughout the year. That said, it really is tough to whittle down what exactly this life changing event has impacted in a sound bite, speech, video or text. But below is another attempt to get down just some of the things I’ve learned – or more so have re-learned but on an entirely different and deeper level. I have a roundtable discussion video shoot this evening for the Adolescent and Young Adult Oncology Program at University Health Network. So, this is good practice.

P.S. Thanks to University Health Network (the folks behind all of the incredible things that happen at Toronto General Hospital, Toronto Western Hospital, Princess Margaret Hospital and Toronto Rehab Hospital) for making me their leading lady for Young Adult Cancer Awareness Week.

Be Present

Being present helped me catch my cancer earlier than later – and was one of the sharpest tools in the shed when it came to mentally and emotionally coping throughout all of this. It’s not easy to stay present. We have become so far removed from being able to do so, that it takes extra effort to bring us back home. But I promise you – it’s worth it. Your relationship with yourself and others will improve.

Often our minds are preoccupied with “Should have” or “What if” thoughts. How often do you catch yourself thinking about the next meeting you have, what you should have mentioned to your friend the other day, what you’re going to have for dinner, where things are going to go – right in the middle of spending your time with someone or something? Are you guilty of it? Many aren’t even aware of this – but perhaps this note will change that. We are all guilty of this from time to time. The problem with having these sort of thoughts is that it pulls some time, energy and attention away from the present. Personally, the thought of missing out on life, learning and love because I’m “too busy” thinking about the past or future terrifies me. It’s important that you have 100% of the attention from those who choose to spend time with you – and vice versa. Give the people and things you are with 100% of you. A simple way to work towards this: Do not have your phone at the dinner table. Even consider turning off the vibrate notification. We all know what happens when you catch a glance at that blinking light or when you feel the vibration from your smartphone: a couple of percentages of your attention, energy and headspace gets pulled out of your current situation and attaches itself to that blinking light – or that person that walked by – or that conversation that is happening at the next table. My boyfriend called attention to my phone being on the dinner table once – and since then, I always make a point to notice whenever we are occupied on our phones (or other things) when we are with one another. We all need reminders from time to time – and I think we all need to do a better job at calling each other out on this. Myself included – on both ends. Our time here and with one another (and ourselves) is too short to accept and give anything less than 100%.

Don’t sweat the small stuff

It’s been communicated to me that one of the biggest lessons learned from those who have been following along have been to “Not sweat the small stuff” – and what qualifies as “small” has changed. Most things that we sweat, really are tiny. Whenever life would get the best of me, my mother always found a way to remind us Van children of this.  I’ve always known it and have always preached it – but now I get it on a whole other level. The things that would worry me and gain a piece of my energy and attention, I am much more easily able to let go. I remind myself what I fought through over the year, and everything all of the sudden seems easy. If my experience has given you a shift in perspective, just imagine what it has done for me. I’ve never been one to allow for certain things that tend to get to people (especially 20 and 30-something year olds) to easily affect me but now, I get it on an entirely different level. I’m telling you, I feel like freakin’ Wonder woman after all of this. All of the challenges I’ve had to face in my past make me giggle a little bit. And those coming up ahead in life I am more confident than ever with re: to knowing I can find my way through. And by the way, even Wonder woman needs to be reminded of her perseverance and strength sometimes. She is human after all. Well, half-human 😉

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Thanks to Dave, for the reminder 🙂 xo

Be vulnerable

Being diagnosed with cancer immediately put me in a vulnerable state. This thing was happening to me. I was being treated even before I could being to wrap my head around what was going on. The side effects were happening to me and I could not control them. A part of me really had to surrender and trust in the process. This was one of the most difficult things I’ve ever had to do. To put so much faith and trust in people and something I knew nothing about that would make or break me, my quality of living – my life. As if being put in so many vulnerable situation wasn’t enough – I decided to push it even further by publishing this blog. I decided to actively share some of my darkest lows and brightest triumphs with the world. I have decided to be completely comfortable with sharing my journey with friends, family, acquaintances and even strangers. And doing so has dramatically changed the way I communicate, connect, love, create and lead – and therefore build and manage relationships. It has improved some of my existing ones and have welcomed new ones. It has also sifted out the ones that in my opinion are just not meant to be part of my life. Life has it’s very interesting ways in sorting all of these things out for you. I’m not even directing any of it. It’s just happening all on it’s own.

Being vulnerable also means showing love and accepting love. I think I used to push people away. Once upon a time, I thought that being strong was to not ask for help and not take that hand whenever it was offered. For as long as I can remember, I have always been this way. I don’t ask people for much at all. Over the past year, I allowed myself to accept help – and it wasn’t easy. It still isn’t the easiest thing for me to do. Sometimes it had to be forced on me – but I accepted it. Eventually, I re-directed my energy to be less angry at the fact that I needed it – and more towards just being thankful for it.

Vulnerability is a crazy strong indicator of courage and strength. It’s about being fearless, confident and not letting your ego get in the way of growth.

One more thing: ask yourself this, do your loved ones really know how you feel about them? Whether you have communicated it to them with words or actions (the most effective way) – make sure this is something you are at peace with. Even in the most upset and heated moments I try to let those I love know, that I do. In fact (and I can only speak for myself on this one) my upset feelings typically come from being hurt by someone or something that I really care about. That’s what it really comes down to. Communicate that – now THAT is being vulnerable.

Keep on reading because this speaks to my next point…

Make no room for luke warm

There were times within the year when I didn’t know how much longer I’d be around. While this is something we all (should) feel – it came really close and things lined up in a way that made me acknowledge it. There was a moment when I was sitting on my hospital bed, hooked up to an oxygen machine (that wasn’t make a difference in my breathing), being so scared to sleep because I didn’t know if I’d wake up and I thought to myself “Do I need to contact anyone? Is there anything I need to tell certain people?” The answer was mostly no. I couldn’t think of any major unfinished businesses I had to close up. Those whom were meant to be in my life at that time, had found their way to me (and many found a way to do so from afar). They had expressed to me how they had felt and I had done the same. Today, I can say that if I were to go tomorrow I would be ok with it. There are of course so many things I want to do, see and experience – but I know that I’ve done a good job with what I have. I’ve learned that sadly, this is something not many people can say. And so, I encourage you to live and love fully. Do not make room for anything luke warm in your life. You are way too valuable for that. It’s about adding value, knowing your worth and ensuring that every single thing and person you spend your energy, time, attention and a piece of you with – you should be crazy hot about. I don’t make time and room for anything “meh”.

Take pride in your battle wounds

Clearly, what I have gone through is something I am ok with sharing with the world. In fact, publishing what I have published (even and especially my dark moments) is an indication that I am more than ok with it. I am proud and confident with who I am. I am not ashamed and I have nothing to hide. It’s also nice to know that others are taking something positive away from being a part of this journey, whether it’s from a far – or being part of my ride or die crew of loved ones. While this cancer does not define me, the experience I have fighting through this battle has definitely been a catalyst for a great deal of positive things that contribute to who I am today and who I will continue to grow in to.

Allow yourself to feel

This kind of goes back to allowing yourself to be vulnerable. Allow yourself to feel – even (and especially) when it’s anger, pain, sadness and frustration. It is very easy for those whom are not fighting your battle to say things like “stay positive”, “be grateful”, “Cancer is a gift!” (*barf!*), “But…you look so healthy!”, “You’ve been so active. Things must be great!” etc. They have no idea what’s going on. Not even close. Allowing yourself to feel upset is as important as being happy that you’re alive. Do not – I repeat do not deprive yourself from feeling the emotions this roller coaster will take you through (even when it’s feeling down). It’s part of the process. Don’t you dare let anyone make you feel guilty for being upset. I’d like to believe that supporters through this journey have good intentions – but just know that they are trying to find a way to cope with this as well and they may have no clue how to do so in a way that is helpful to you. While you have the toughest journey to go through, know that it is also difficult for those around you as well – which can result in silly and inappropriate behaviour. And trust me, I’ve experienced this kind of behaviour. I just try to keep communication as open and healthy as possible, remind myself that intentions are (hopefully) good and that this is new to everyone – including myself.

Hang in there. Just 10 more seconds

There have been countless amount of times throughout this war when I did not know if I could take any more. There were times. One of the ones that was documented on here was going through my first round of chemotherapy. Near the end of of it, I couldn’t take any more. It was so difficult in more ways than one: mentally, emotionally and physically. There’s a reason why ringing that Bravery Bell is a big deal at all cancer care facilities. It’s a massive celebration for being done with chemotherapy. I watched this video for the first time a few weeks ago – and it kind of broke my heart to see how happy I was:

And then I received the devastating news that my treatment wasn’t enough and it meant that I needed more aggressive chemotherapy and a stem cell transplant. “More aggressive? What does that even mean? I hit my absolute limit with that last one. What does ‘more aggressive’ even feel like?” I felt so defeated. I was so hurt. I didn’t know how much longer I could hold on for:

Throughout those next chemotherapy rounds, pain and discomfort from the chest biopsy, chest pains, desperately gasping for air, being poked many times holding my breath during radiation, etc. – I told myself each time “Just 10 more seconds” And when those 10 seconds were up I told myself again “10 more seconds”. After that, I told myself “You’ve done it. You can do it again. 10 more seconds”.

We are so much more stronger than we know. Push through…for 10 more seconds.

Embrace not having complete control

I used to be a control freak. Really, it’s been this past year that has consoled me out of it. And so, I guess I can say that I’m a recovering control freak. There was very little I had control of over the past year. It was a complete whirlwind of all things unpredictable and inconsistent. I’m used to stretching my imagination, thinking of multiple future scenarios by asking endless amounts of “What ifs” – and then developing a plan H for everything. I always have my $#!% together. Barely anything comes from left field to me. And so, in the rare occasion when they do, I become a big stressball and am very hard on myself.”How the hell did you not account for that one, Carolyn?!” I used to think I had incredible adaptability skills – being an entrepreneur in a fast-moving industry teaches you to grow a serious layer of this –  but really, I had no idea. This entire year was something I did not plan for. If you want to talk to me about being agile and adapting to change – NOW I’ve got something to say and can walk the walk like it’s nobody’s business. While I will continue to plan for every future scenario I can come up with (I can’t help it), I’ve learned to acknowledge that I will not have complete control over everything. There is always that chance that a wrench (that you did not account for) is going to be thrown in there somewhere. In my personal case, it was one big explosive bomb. But instead of stressing out over the fact that I may have not seen it coming, I have learned to find it kind of freeing. This has changed the way I plan, problem solve and manage my composure in stressful situations. I find peace in knowing that while I may not be able to plan things down to the how tos, I can aim and plan towards a direction.

I told myself many times throughout all of this “I have no idea how the hell I’m going to make it through this one (“the how tos”)- but I know that I’m going to make it through (“the direction”)”. While everything about this journey felt unfamiliar and new, I held on to the fact that I have told myself this a few times in my life. I found comfort in the familiarity of that feeling. Even in my lowest of low moments, the one thing I always felt confident in was my ability to figure things out. I always do.

Ask “How are you?

Quite frankly, I don’t think most people (supporters) are able to handle all of the things that come along with cancer and cancer treatment. It’s dark – and I’ve seen people cope with it in interesting ways because they just don’t know how. It is nothing like how it’s depicted in TV shows and in the movies. Unless you experience it yourself, you will never know (and I would never ever wish for people to experience it themselves). Even then, I’ve learned from spending time with survivors that every experience is different.

We are all so much more comfortable with things we can see, touch and feel. Having an “invisible” illness is tough. On one hand, I like that cancer is not the primary topic of discussion whenever I meet new people. On the other hand, sometimes everything to do with what I’m going through that is not visible is not acknowledge and sometimes diminished down to nothing. I didn’t realize how rare and nice it is to be asked “How are you?” until I was asked by a friend the other day vs. “How’s treatment going?” “How’s the mass?” “How are your appointments?”, etc. People like to stay close to what makes them comfortable. The cancer warrior you are supporting is a lot more uncomfortable right now than you will ever be throughout all of this. So, go ahead and ask “How are you?”. You can do it. Trust me.

I’m finding that I am asking “How are you?” more often now. Instead of asking things like “How’s work going?”, “How is ‘so and so’ doing?”, etc. I’m asking things like “So, how are you?” and “What’s your story?” Sometimes it catches people off guard – but at least it gets them to pause for a moment to feel out how things are really going.

Practice gratitude regularly

I had a really rough year to say the least. There was a lot of not so fun news that came by way.  There have been times when I didn’t know if I would wake up the next day. I’ve been so weak that taking a shower without anyone’s help was difficult. I had difficulty doing simple tasks like reaching to the back of my kitchen cupboard to grab a glass. I could not do anything without anyone’s help. I became so frustrated at the fact that this cancer was robbing away my independence. This cancer and all of the medication and treatment has taken a toll on me. I can’t even count the number of times I’ve seen “organ failure” and “death” as potential drug side effects. All this is to say that for every $#@! thing that has happened over the past year, I can easily without even barely trying can think of at least 10 things to celebrate. And I can still say without an ounce of hesitation that life is beautiful.

2 replies »

  1. Hello there.

    I just wanted to say that you are beautiful. Inside and out. Your energy, your strength, your spirit, your sense of humour, your wisdom, and your outlook on life is truly inspiring. To be honest, I don’t even know how I ended up here last year, but, I always find myself coming back here just to see how you are feeling. It’s quite strange, I’m sure you have a lot of lurkers who are like me, either scared or shy of commenting (I wasn’t even going to comment!) but this post is just something else – I can absolutely feel it coming straight from your heart — soul, even. It’s true, everybody has a story, beautifully heartbreaking or heartbreakingly beautiful, yet, not everyone shares their story. I, thank you, for sharing yours, from the depths of your heart and soul. Your story, and your life is beautiful. Never let anyone question or tell you otherwise. I pray that you’ll be miraculously be cured from this terrible illness because a courageous soul like yours, should never have to suffer. Sending you love and light always… ❤️☀️🙏 ~ sokie

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Today is the one year anniversary of my grandma's passing. I'm quietly enjoying snacks and making a dish that I associate with one of my personal favourite childhood memories with her. An emotional day celebrating how lucky I feel to have had her play the role she did in my life! Love you ba ngoai ❤😘😊🙌🙏.#SoGrateful #BanhBo It's everywhere. 
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