One of the most diffcult things I’ve found in living with stage 4 cancer, is the lack of stories of each other.
Don’t get me wrong. I know how this story ends: I know the timeline, I know the side effects, I know things are going to suck. I’ve done plenty of raging and crying against how unfair it is. There’s a lot of bad stories out there. Because yes this does entirely suck and its entirely unfair. Nevermind that a hard story is sexy and that’s what sells and gets donations. Nobody wants to hear the success story.
But there is so much life in between the diagnosis and the end that we don’t talk about. There’s just no stories of people like me and what it’s like to go through this. We don’t talk about managing symptoms, of the new treatments and the new meds. Of what getting a week of full brain radiation is actually like. The hope and the hardship. The things that become normalized like having to get IV treatment every three weeks. Or the fear every three months brings you.
We don’t just talk about how this is also a normal piece of life.
It could be some other disease I had. Diabetes, MS, a stroke. And they all suck. But life is still happening. Our son is still growing up. Our business still needs to keep moving. The last 12 months were admittedly a bit of a reprieve from this all, lulling me into a soft blanket that I was stable.
And I was, until I wasn’t.
Life didn’t end a year and a half ago. I still got to do so much. See so much. Be so much. And I still can be. We can take adventures, and try new things, and just live our lives around the symptoms and side effects. One day, one moment, at a time.
I’m still here for as long as I can be. Living with cancer. Living.
I’ve just decided to fuck it and try to post here regularly. Share some of the fiction I’ve written instead of hoarding it. Share some of the lessons I’ve learned in TTRPGS, small biz, communications, and community building. Share a slice of life of what it’s actually like to be living with cancer.
Because maybe there is someone else like me going through this huge diagnosis. Knowing the end is coming. But life is also coming. Life is here. And we’re going to live it for every day.
This is not the news I wanted to share today, instead it’s a flaming hot pile of bullshit. But here we are.
Last week I got CT scan results back. Apparently the cancer has metastasized into my brain. It has caused my right hand to go numb, and causes a bit of tension in my neck. Otherwise I feel totally fine and normal.
We were lucky to catch it. Apparently the type of cancer I have doesn’t usually go into the brain, so they didn’t think to check. And because brain fluid can be very difficult for chemo meds to penetrate, the meds I’m on have been working fabulously against the other tumours in my body but not well in my brain.
I go for full brain radiation starting next week. They will figure out if I stay on my current chemo meds or if they will tweak it to something that will do a better job in the brain. It’s all a wait and see situation until after radiation. We just have to get through this next step. The oncologist is confident that I will make it through.
It sucks. So bad. I am devastated by this news. But I’m going to keep fighting as long as I can because I have so many things to fight for including myself. I am HERE and I’m not going to give up on this. I’m scared out of my mind, but I am full of hope and determination. I WILL get through this. I will see Miles’s second birthday, I will see our 10th wedding anniversary, I will reach 40, I will take Miles to Disneyland again. I WILL FIGHT.
Send us all the emotional love, prayers, and healing thoughts you can next week while I go through this treatment. If you need a physical way to help, a homemade meal goes a long way. Please also consider a donation to Andrea’s Adventurers and help us continue to fund cancer research.
It still almost doesn’t feel real. Here I am, a week and a half after my first chemo treatment and it’s still hard to believe that I have to deal with this shit again.
Last week was probably a lot harder than it needed to be, given that it was Christmas. I really wanted to have a normal Christmas, especially as it was Miles’s first Christmas, but also because I love this holiday and it brings me so much joy. It was still a lovely few days, but extra tiring from all the hubbub. Still got to spend it with family and friends, so it was worth it, but we’ll wait to see if round 2 brings the same about the same level of tiredness.
Because oh man I was definitely tired. And had a lot of brain fuzz those first few days. There was even an instance where the brain fuzz was so bad that I was trying to change a diaper and it was all I could do to focus on how to do it. I got through it, but I ended up breaking down crying because it was so tough for me to concentrate on what the next steps were.
My mouth has been on fire too. It lasted about a week, but now it’s broken out into mouth sores. My stomach felt like acid (though while taking the dexamethasone it was like my body could feel it and yet it was numbed?) and I had acidic/spicy pee and poops. I had a fair bit of back pain, too, to the point that I couldn’t lift the baby which made me extra sad.
Yesterday was the first day that I actually felt mostly human, apart from the mouth sores. Though I’ve had diarrhea yesterday and today. And today I have a headache (though I might not have had enough fluids yesterday).
My heart is still trying to wrap itself around the fact that my time on this planet is now short. I know in my heart that I’m going to fight this the best I can, and that I have accepted that this is what it is, but it’s hard to not sit in those moments. We spent the weekend with our best friends, and the kiddos had kiddo moments. I kept joking that “this is what we have to look forward to” in regards to Miles, but then my brain would add “if I live that long”. I know that as soon as we’re born everybody has a timer–nobody escapes death–but to have it so evident and obvious is so difficult to process. To know that yours is significantly shorter than the average person’s, that you might not get to experience those milestones with your kid weighs heavy. Then I have the added guilt that I want to be present and enjoy each day, but it’s exceptionally hard when you’re feeling like garbage.
I never thought I’d be here the first time. I hoped I wouldn’t be here a second time. But here I am.
Last week we learned that my breast cancer has returned and has metastasized into my lung, liver, and bones. In March I had reached my 5 year survivorship milestone, so to have this news hit so soon after has been a big shock. Blair and I are pretty devastated, after everything we’ve been through these past 6 years since I was initially diagnosed. We’ve been taking the last week to digest and connect with family and close friends.
Today I start back on treatments. I told the oncologist I wanted to get on this right away to give me the best possible chance, so she was ON IT. I’ll be on chemo for the next six months, and then regular preventative treatments for the rest of my life or until it stops being effective (and then they’ll change up the treatments).
This is NOT a death sentence. It sucks bad and is really sad. But Blair and I are trying to treat this more like a chronic condition that I now have to live with. I may live 2 years, 5 years, 10+ years… who knows, but I am NOT dying tomorrow. I am choosing to live everyday to the best I can and I have so much to live for. So I am picking up that battle sword and I will just.. keep… going.
We are going to need all your love, support, and hugs, especially these first six months while the chemo takes it out of me. We have to keep working because Adventure Dice is our only source of income, and I’m not going to be at my best. We will likely be reaching out for childcare, home cooked meals, and Adventure Dice help. Blair needs lots of hugs.
Together, we’ve got this. There is nothing else to it.
Thank you all for your love and support. -Andrea, Blair, and Miles
Last night, for the first time in a very long time (six months? A year?) I actually made time to write again. I decided at 10pm that I would spend an hour writing. I haven’t been doing things to fill my bucket lately (baby, business, etc), and especially 2022 was so stressful, so my goal for October is to try to do more things that fulfill me in other ways.
Boy, was it intimidating sitting down at the keyboard again. I could feel my panic rising as I tried to figure out what to write, could feel that wall rise up that always comes up when my writing gets hard.
I tried to work a little on my Wren book, but after a few minutes of scrolling through my outline and my work-in-progress I was floundering. It had been so long since I had touched it, I didn’t even know where to start. Do I jump in with just a random scene and go? Do I go to the beginning and read it again to reminder myself? Those are both good strategies I think, but it just seemed like a lot.
So a stopped, and thought about it. Part of getting back into writing is also getting back into the practice of writing. I told myself that I didn’t have to tackle one of my works in progress. Just writing anything to get my brain back into the routine and the rhythm of the practice would be a big step.
So I found myself some writing prompts, picked one that tickled my brain and went for it.
It was a slog. My anxiety kept wanting me to bail. I fidgeted a lot, and pondered a lot. And made myself stay in my chair until 11 at least trying. One more word, one more sentence at a time.
Forty five minutes later I’d written just over a page. Was it perfect? No. But I felt so good having persevered through it. I showed myself that I can still do it. I just need to make time and go and push through the anxiety.
I’m proud of myself for trying. I’m hoping to set aside a “creative” time for myself. After the baby’s bedtime routine but before my own, reserve that little space of time for filling my creative bucket.
This past weekend, I was honoured to be the Participant of Hope at the Fraser Valley Relay for Life for the Canadian Cancer Society. I got to share my story, so here it is!
This is a story about Dungeons & Dragons. And about Fundraising. Little of both.
The first time I fundraised for the Canadian Cancer Society, I was 12. My Pathfinder group sold daffodils outside the local IGA as our service project. At the time, I didn’t directly know anyone who had cancer. Cancer was just the Big Bad Evil Guy in the books I’d read growing up. It was something that other people, old people, got but nobody really talked about. I remember thinking how these pretty yellow flowers looked sitting in their water buckets just waiting to be chosen. I couldn’t figure out how something so cheerful and delicate could fight this Big Bad.
My senior year of highschool, I joined our school’s Mission: Possible crew, a group that was dedicated to raising funds and awareness at the school level. We sold yellow ribbons and pins in the foyer at lunch time and after school. Thanks to the club I learned more about what cancer was, that it wasn’t just old people who got it, but I definitely still felt like it happened to people I didn’t know. It was still just a storytale.
And then cancer came home. As I was studying for provincial exams and worrying about post-secondary, my dad was diagnosed with prostate cancer. My parents said it was Serious and yet Not Serious in the way that parents do, that he’d only need surgery and recovery. Surgery happened in June, so you can be sure that I studied for my exams under his watchful and very bored eye as he recovered at home.
The next time I fundraised, I did it for my Dad.
I was in university and my Dad’s work was sponsoring the Father’s Day Prostate Cancer walk. Team For Pete’s Sake came together and every step of that charity 5k walk had meaning because now I was fundraising for someone I loved. Cancer seemed like it could still be the Big and Scary Monster, but a little less so. My Dad was doing well, we were fundraising to ensure other Dads didn’t have to walk that path too. It was all going to be okay.
Big Bad laughed.
My senior year in university, Big Bad came home again. This time it was my mom, diagnosed with breast cancer. Her lumpectomy, the chemo, the radiation, her bravery, her pain, her courage, her will to fight back: now the Big Bad felt real. It was there everyday, showing me what real big and scary looked like. But my mom showed me what bravery looks like, where the adventurer picks up their sword every day and just. Keeps. Going.
The next time Team for Pete’s Sake did the Father’s Day walk, every step meant that much more. I was doing it for both my parents.
And then 2017 happened. My husband Blair and I not-so-lovingly refer to it as “The Year From Hell”. It was a year that started with my husband being in two serious car accidents and ended with me being diagnosed with stage three breast cancer. At 31 and a newlywed, cancer was not on my character sheet. I can still remember that moment when I heard those words, “You have cancer.” I was at the Breast Health Clinic in Abbotsford and the nurse had lovely black hair with bright blue streaks. I went numb. I could hardly breathe. All I could do was stare across the room at my mom as my brain processed the fact that Big Bad had now come for me.
All those years, all those kilometers walked, all those ribbons and flowers sold… was I doing it for me all along?
Yes.
But also no.
If you’ve never played Dungeons & Dragons, or D&D as it’s often called, it’s a tabletop game where the players work together to tell a story. The Game Moderator acts as the story narrator, setting the scene for the other players and giving them opportunities for adventure. The other players take on the role of the heroes of the story, needing to interact and work together in order to succeed and ultimately tell an awesome tale. While I was undergoing cancer treatments, the game allowed Me and Blair to connect with our friends on a regular basis, we were able to play online over Zoom when I was immunocompromised, and it allowed us to step away from “real life” for a bit as we wove tales of what our characters would do.
One of the big elements of D&D is that when the Big Bad Evil Guy arrives, the adventurer’s rise up to fight back. The Big Bad had come for me, and like the characters we get to play in our favourite game, it was our turn to roll.
Across that room in the Breast Health Clinic my mom looked at me and nodded. That one look told me I could do this. That I wouldn’t be alone. That it didn’t matter how small and fragile and scared I was feeling. Because I had my Mom and Dad, warriors who had tread this path before me. I had my husband, who has the biggest shoulders to carry me–emotionally, and yes there were times he had to literally carry me. I had my friends, who donned their armor and brought their swords to fight next to me. I had the Canadian Cancer Society and the connections I made with others who were on this journey, too.
In 2018, Team Andrea’s Adventurers participated in our first Relay for Life. We fundraised for me, yes, but also for every person who has been in our shoes. Because in Dungeon and Dragons when one party member is attacked, we all roll for initiative.
For a while, COVID-19 tried to be the scariest monster on the table. But just like the Big Bad Evil Guy in stories, cancer doesn’t stop just because there’s another monster around. Over the pandemic, Andrea’s Adventurers Charity RPG Weekend launched online. Nine Game Moderators and 30+ players played nine games of Dungeons and Dragons over 40 hours and three days. We raised $10,000 by telling stories together. When such a kind, caring community teams up with you for this common goal—people who are willing to do shots of Hot Sauce…numerous shots of hot sauce on what is essentially live television–I truly feel like one of the brave adventurers in the stories we tell.
In 2021, my mom was diagnosed with cancer again. My mom continues to fight with a fierness found in most prairie folk and wise warriors. She is the bravest, kindest, strongest, most loving person I know. Even in her most pain-filled days, she always has joy and love to share. Those are the weapons she wields to tell Big Bad that it hasn’t won yet.
This past weekend was our third year running our online D&D event. On Sunday as I thanked all my volunteers, I cried happysad tears. I was reminded of those cheerful daffodils from my very first fundraiser. I finally understood why something so delicate could fight a Big Bad like cancer. Because it’s a reminder that no matter how fragile I feel, I can be brave, too. That with every flower, ribbon, and step, my adventuring party is with me. And that together, we will win this fight against cancer.
Well-meaning words, the speaker wanting to share in your happiness. They come from a place of joy, not malicious intent.
And yet, they cut deep.
Five years ago, I was diagnosed with stage 3 breast cancer. I had a single mastectomy then to remove the cancer from my body. I made the decision then to not get reconstructive surgery. It would have meant two to three more surgeries, plus no guarantee of a successful reconstruction.
Last year, I had a prophylactic (preventative) mastectomy to reduce the risk of cancer returning. I still decided to forgo plastic surgery. I’d always felt a little uncomfortable with my breasts. They drew attention I didn’t always want. Men would talk only to my chest and not to me. Bras were annoying and never fit quite right, sometimes they chafed. They got in the way a lot. Not having breasts felt freeing.
I have prosthetics that I can wear, but most of the time I don’t bother. I was mostly content in my new flatness. This is my body now, literal scars and all.
Then the pandemic restrictions started to lift. I had to go back to the office. I had to go out more and more. I saw more people. The well-meaning comments about my possible pregnancy began.
My weight tends to go to my belly. Not having breasts makes my belly really obvious.
The last five year have been exceptionally difficult for me and my husband. One difficult circumstance after another has landed in our laps, in addition to a global pandemic. Trauma does things to bodies, and I’ve put on more weight.
I’ve always been self-conscious about my belly. I look at photos of myself from ten and twenty years ago and feel sad for the person I was who thought she was fat. I hate that feeling fat made me feel bad about myself then, that I felt ugly and unworthy. I hate that it still makes me feel bad about myself. I’ve been working hard to untangle these feelings about my weight and my looks, to repair some of my learned beliefs. To feel like my body is worthy.
And while the pregnancy comments do trigger my self-esteem regarding my weight, they cut even deeper than that. They’re a reminder of a dream that is just out of my grasp right now.
Blair and I have been trying to expand our family with a kiddo for six years. A year of trying ourselves before the cancer bomb went off. Then having my eggs harvested in between having a traumatic surgery and starting chemotherapy. Then learning that the hormones a body needs to make a baby are exactly what my cancer likes to eat. Years of processing this grief that my body won’t do what it should do, working through the guilt and the loss. Making the big (and expensive) decision to pursue surrogacy. Putting our hearts on our sleeves to find a surrogate. Trying once, twice, three times with no success. Still putting our hopes out into the universe and putting our hearts into someone else’s hands.
My belly is a reminder of grief and loss, of pain and struggle and sacrifice. It’s a reminder of a story not yet finished; a reminder of dreams not yet reached.
Life threw me a major curveball in 2017. I’ve shared bits of it over on twitter, but if you don’t follow me there: I was diagnosed with stage 3 breast cancer, and spent the last year and a half going through treatment. I’m officially considered a cancer survivor, but as any survivor will tell you, it’s something that will echo through the rest of my life.
And thus for my first post back I’m going to talk about… the healing power of gaming!
There are a lot of benefits to tabletop gaming, even if you aren’t suffering a major illness. But reflecting back, gaming really was a positive factor that got me through the bad times. My husband and I wouldn’t have made it through this past couple of years if it hadn’t been for our family, and for our awesome friends who kept our spirits up through gaming.
TCTC 2018 with my hair just barely starting to grow back.
Since I’m a big fan of lists these days, here are my ways that gaming helped me heal:
Distraction. Gaming gave me the chance to think about something else. Whether it was an immersive RPG or just a quick five minute party game, it gave me something totally different to focus on than my medical issues.
Escape. With Dungeons & Dragons and role-playing games, I was able to become someone else for a while. For a few hours I wasn’t “Andrea the cancer patient”, I was Ocoria the Goliath Monk, Ellie the vampire, or Wren the Starfleet Security Officer. It also gave me the chance to feel their strength even when I wasn’t feeling strong in my own life.
Connection. My friends wanted to be supportive and present in my life, but sometimes it was difficult for them to know what to do or say. Gaming gave our friends a way to bring some extra positivity into our lives when we desperately needed it. I think this really solidified our friendships in many ways.
Accessibility. New technology in the gaming sphere allowed me to continue playing, even when some of the side effects of my treatment would have otherwise prevented me. I could still participate in our regularly scheduled D&D games on roll20 without having to leave our house.
Mental focus. Chemo brain is this fuzz that rolls into your mind and memory. Some days it feels like you’re in a heavy fog. Some days it’s like your short term memory has taken a vacation. But gaming gave me something specific to focus and concentrate on, to help me keep my mental acuity as sharp as I could.
Laughter. It really is the best medicine. Even on the worst days, laughter was possible. (And laughter releases endorphins, which makes you feel happier.)
Gaming conventions are a great place to meet new people who share your interest, try new games without taking the risk of buying a game first, and to share your favourite games with others. But if you’re an introvert like me, sometimes conventions can be intimidating because they require a fair amount of energy and socializing.
Fret not! The good times and gaming at cons definitely outweigh the energy requirements. Over the years I’ve learned ways to make the most out of gaming convention while keeping my introvert sanity.
Here are my tips for introverts to survive a gaming convention:
Start small / go big. There are advantages and disadvantages to attending small conventions and bigger ones. Small conventions tend to be quieter, but more intimate. Bigger conventions make it easier to disappear with the crowd, but the noise level and number of people are also a lot more stressful. I plan my activities and break times for each type accordingly. If it’s your first time going to a con, determine what size you’re comfortable with against what you hope to get out of the event.
Take a friend. This ensures you’ll always have a buddy to play games with. It’s even better if you have an extroverted friend who knows your introversion. I’m terrible at introducing myself and making small talk, but husband is awesome at it. Or if I’m feeling particularly bashful about approaching someone I want to talk to, he either helps to give me courage or is willing to step up and help me approach them.
Find a quiet space. Whether it’s a quiet corridor or a coffee shop down the street, find a space where you can get out of the noise. This will help you build your energy reserve back up again. This is especially important if you aren’t staying at the con hotel and don’t have your own space to flee to!
Stay at the convention hotel. By having a space that’s my ‘own’ that’s only a short elevator ride away means I have that quiet space I can escape to when I just need to get out of the noise and be a zombie for an hour. I know this can be costly, but over the years I’ve found this is the best option for me attending a convention. Otherwise, try to stay with a friend who lives close enough to the convention and doesn’t mind you returning to their place by yourself for a few hours.
Take breaks. Don’t feel pressured to DOALLTHETHINGS. Instead of gaming 12 hours straight, set your own pace. Watch games being played, go for a walk, or borrow a game from the library and read it’s rulebook.
Stay fed and hydrated. This will help you keep your energy levels up for longer.
Teach a game you know. Not only does it automatically give you something to talk about that you like, but it’s also a way to ensure you have a captive audience. The only downside to this is if it’s a particularly noisy event space, it’s really easy for an introvert to lose their voice as they fight to be heard. After DMing one session of D&D5e last year at a con that was in a gymnasium, I could hardly be heard when I spoke for the rest of the event…
Volunteer. Sometimes having a specific task to focus on makes it easier for me to break out of my shell, especially when I’m having a low energy day.
Go outside your comfort zone. I’ve made awesome friends, learned new games, and had some cool opportunities happen because I was willing to go outside my comfort zone. That’s not to say you have to be uncomfortable for the entire event, but sometimes introducing yourself to a game designer, trying a new game, or volunteering will be worth it. (Of course, when I say go outside your comfort zone, I don’t mean try something that is or makes you feel unsafe. Trust your gut).
Introvert friends: are there any other tips for introverts at conventions I missed?
This morning I pulled out an older manuscript of mine, determined to give it a thorough editing. It was one of those pieces that I’d written and, when finished, thought “gee, this turned out better than I thought.” It was one of those pieces that had got me to thinking that maybe I could take a crack at the whole “getting published” idea.
As I read through the chapters my optimism rapidly dissolved. “How in the world did I think this was good?” The writing was hokey. I immediately poked a tonne of holes into the story and the characters. I’d started so many different subplots, which thread was meant to be the main plot? I hadn’t even finished the story itself.
Reflecting back on it, perhaps at the time it was a good piece for me. It surprised me that something only three years old could be so awful. Because I write every day, I don’t see the improvement I’m making – the same way a parent doesn’t notice how their kids grow until they see an old photograph. Three years is a long time to improve my skill, even if only enough to see where I went wrong with the manuscript.
One of the best writing tips I think I’ve ever received is, “at first, you are going to suck.” And it’s true. Nobody is perfect on the first attempt; or maybe the second, sixth, or one hundredth. But every attempt you make, you will get a little better.
Despite knowing that, it still socks it to my self-esteem. Will I ever improve to the point where I have a finished manuscript that I’m satisfied with enough to submit to a publisher?
-Andrea, Blair, and Miles
