Today is a pretty remarkable day in my life. The day my life was changed, utterly and completely – nine years ago. When I think about that, I am brought to tears. After all I wasn’t supposed to be here. If it weren’t for luck and scientific breakthrough, I wouldn’t be. There are times I wonder why I am, still here that is. If it were any other kind of anniversary, I would be celebrating with a party or a cake. Because it’s my cancerversary, my day is spent reflecting on my blessings and thinking of all the dear friends I have lost along the way.
In years past, I have been so busy that the day has almost gone by without notice, can you imagine? A day not thinking about cancer, a normal day. I don’t have many of those. 3,285 not normal days, just off, abnormal like the cancer. Some days I feel every second. On other days, time flies.
I live a condensed life, condensed experience, condensed joy.
This year is kind of a monumental year. I turn 40 in just more than a month. 40! Middle aged (when did that happen :o)! Believe me, I didn’t think I’d ever see my 35th, let alone my 40th. When I was diagnosed nine years ago, I didn’t think I’d get to do a lot of things!
I didn’t think I’d ever be able to buy a car or a house. I didn’t think I’d get to travel. I didn’t think I’d get the chance to fall in love. I didn’t think I’d ever advocate for change. What did I know!? I had no idea what potential my life had. I had no idea of what I could achieve. I had no idea what life truly held. I had no idea what it meant to live. I mean really live.
It shouldn’t take critical or terminal illness to teach us that lesson. Why can’t we all live genuinely, authentically, passionately, no time for B.S. kind of lives.
When you realize that time is really the precious commodity that everyone is after, you begin to value it over everything else. Things are just thing and are transient. Money can be made, of course it can buy comfort, but it’s just a thing. Time on the other hand provides us with opportunity. Opportunity to spend it on doing what we love. Opportunity to spend it wisely. I say that, because for us, it’s limited.
Our clocks start ticking they day we are born. So we can chase money and fancy things, and spend all that time working and running in circles. Or. We can open our eyes and see how beautiful the sunrise is, especially when you are with someone you love. How magnificent it is to experience the cultures of the world. How wonderful it is to be loved.
I wouldn’t be here without Love. The love (and kindness) of my medical team. Love from my family and friends. The love of my dogs. The love of my life. Thank you all! I couldn’t do it alone. I know together, we move forward.
Its Valentine’s Day (and Ash Wednesday – irony?!), I had planned to write about some of
the struggles of dating and cancer, but I am sick with the flu and my fever addled brain isn’t functioning as diligently as I’d like. So to avoid me writing nonsense, I will repost what I wrote last year and save that topic for my next post. If there are any specific questions you might have regarding dating and cancer, please send them to me and I will do my best to address them in the post. Until then, whether you are spending the day with your valentine or going solo, know that you are loved.
Be well xo
On this St. Valentine’s Day, I thought I’d share with you the story of how my husband and I met.
Now before I get to the meat and potatoes of the story, I must give you a little backgrounder. Before I got diagnosed with cancer, I didn’t date. Especially online dating. Like many, I had my reasons, but mainly, it was because I was so fracking busy I had no time to socialize with my friends, never mind strangers. So at that time, I figured, if something came around, it came around. My focus was my career. Of course, when I got sick, the main focus was on that, and getting better. So again, dating, not high on the priority list.
When I got sick again, I thought I was a goner. I figured it was time to get out there. I mean if I was going to die, I may as well have a little fun before kicking it. I decided to put my profile up on a few dating sites. I relegated myself to knowing I’d likely meet a few wackadoodles, because such is life. If that happened, I’d just politely thank and excuse myself and quickly extricate myself from the situation, pick up the tab and be gone, thank you very much. After all I have terminal lung cancer, I don’t have time to waste!
So here comes the good stuff.
I winked at Patrick and he winked back at me, at least that was how it was done on that particular site. I know cheesy!
Shortly after the wink, he sent me a message kindly asking if I would like his number. I of course said yes. I anticipated a call from him, but a week went by, then two, so I figured he had lost interest and didn’t think on it too much. Ok fail numero uno. No problem.
Then out of the blue, about a month later, I get a phone call and its Patrick. I almost didn’t answer because I was waiting to go into an appointment when he called, but he was so apologetic, I couldn’t resist. He said he had been thinking about calling all month, but he had been so swamped at work that he could never find the right time. He called because he had a few days off for Thanksgiving and his birthday and wanted to meet me. I offered to take him for coffee for his birthday. It was arranged that we’d meet at the Dark Horse Espresso Bar at 4 on his birthday.
As left my house to meet him, I remember thinking “wouldn’t it be funny if we ended up on the same streetcar?!” It would since I was coming from the west end of the city and he was coming from the east. So when I approached the streetcars at Spadina Station, I texted him to let him know I was on my way. He replied, so am I. There was such a crowd waiting to get on streetcars that day, I decided to wait for the crowd to die down and I got on the next one. I got on and went to stand where I usually stand at the back of the car in front of the back doors.
Even though I had waited, it was still jam-packed. After the streetcar passed College, a bunch of people got off and there was some space. So I texted him again saying, “I just passed College, I’ll see you at Dark Horse.” He replied with “me too.” When I looked up from my phone I spotted a guy that met the description Patrick had given me. I chuckled to myself because he was literally 5 feet in front of me.
Upon my realization, I texted “Are you wearing a grey hat?”
“I think you are on my streetcar.”
At which time he had moved directly in front of me, but had his back turned. I watched as he looked about the streetcar trying to find me. Just before our stop, I tapped him on the shoulder. He turned, looked at me and said “You’re short.” (Oh God…here we go) “I’m sorry, I just mean usually girls I’ve met are taller than me. You’re awesome!” (Ok, you get one…and you recovered well).
At Dark Horse the conversation came fast and easy. He made me laugh, I felt like we knew each other already. We talked so much, we shut down the shop. At this point, I didn’t want the date to end, so I said “hey, are you hungry, I am, we should grab a bite.”
“Yeah! Absolutely.” So we walked a short distance on Queen St. and stopped in at little bistro. Again, the conversation came easy and we ate and talked and ate and talked until it was time for them to close.
We had met at 4 that afternoon and now it was 11:30, but time flew by so fast! He walked me to the subway, but before we said our good byes he says, “My room mate is throwing me a birthday party. Do you want to come?” As much I really didn’t want to say good night, but I was going to Ottawa the next day for a conference and really did need to get home. The funny thing was, he should have been at that party way earlier on that evening. I guess he didn’t want the date to end either. We parted ways and I was of to Ottawa.
The next day sent me a text me to say what a good time he had and we chatted away the whole weekend and agreed to see each other again. When I got off the train three days later, he met me with snacks, because he knew I had been on a train for 5 hours and I might be hungry (Swoon). He then said he had dinner awaiting me.
As I wandered his apartment, I noticed the pictures he had of family, it was really nice. I knew that I liked him, I also knew I had a huge monkey on my back! I had been tormented all weekend and all though our date. I felt so deceptive by keeping my cancerous life from him. Did I wait to tell him, or do I break the news now so he’s not invested. From all I have seen, I need to do it sooner than later. He is too nice to get hurt.
After dinner, as we sat on the couch, I knew it was my opportunity (well it was nice meeting you), I took a deep breath and said, “I have something to tell you.”
“Oh, is everything alright?”
“Yes. But. Ok, how do I….It’s nothing that has to do with you, it actually me. I’m…I’m not an alien, but I am a mutant.”
“I’m sorry, what?”
“I’m a mutant, I have ALK rearranged stage 4 lung cancer. So I’d understand if you don’t want to see me again.” He took my hand and looked at me and said “My friend’s wife has cancer too, I think you guys would make great friends. I really like you, I’m not going anywhere.”
When I started this Blog, it was really intended to be an outlet to express my life and with it was like living with a terminal illness, lumps and all. It is still that, but it has turned into so much more. Little did I know that a year ago on Bell Let’s Talk Day, a post I wrote the previous year talking about what it was like coming off of antidepressants would resonate so deeply. Deeply enough that it was picked up by WordPress’ Discovery team (a very awesome experience). I don’t know if this year’s post will be as profound or powerful, but I hope it touches someone out there and let’s them know they aren’t alone, and it’s ok to ask for help.
This year has been hands down the hardest year for me mental health wise. I have felt things that don’t seem like me. I have always been cheerful and tenacious, but since changing cancer medications, I have felt anything but. I wish I could just switch meds, but they ARE the thing that keeps me NED and cancer free(ish), so I can’t just stop, or change, I have to deal.
But it has been scary!
This year I have gone to some very dark places, had thoughts I never thought I’d have. I have to remind myself, that I am not these thoughts, and that tomorrow is a new day. Initially, these thoughts would casually pass through my consciousness very briefly, to float away. Then they would happen as I looked at my life saving medication and wondered why I take them? I mean what’s the point? I’m so tired of all this. Gulp. Swallow, down the meds go. The thoughts soon float away. I then found myself on occasions, especially when I was feeling particularly down or feeling sorry for myself questioning whether or not everyone would be better off without me? On very rare occasions I actually uttered these horrible thoughts, “I wish I were dead.” There it is. Dark. I am not my thoughts!
It took me a few times experiencing this downward spiral to realize that something was really wrong. I was in a crisis that I hid from everyone, even myself. Upon this revelation, I immediately called my psychiatrist. Even with counseling and antidepressants, the depression and darkness seeped through. It wasn’t until I read another blog responding to Chris Cornell’s suicide that I really even realized this wasn’t me and that my brain as the author put it, was sick. It took an increased dose of my antidepressants and more frequent counseling visits to vastly diminish the dark. I still feel down, but now I try to remember that tomorrow is a fresh start, I allow myself to feel whatever it is I need to feel, and then try to move on. I never give it a postal code. I won’t live there. I have too much to live for. Too much work to do. I love life too much, and I certainly didn’t go through all this to just throw-in the towel or bury my head in the sand.
For those who live in Canada, we have a wonderful initiative, sponsored by Bell Canada. It happens every year around this time and it raises both funds and awareness for mental health in Canada. Mental illness effects 1 in 3 Canadians, and yet it is still largely stigmatized. Bell Let’s Talk Day removes the stigma by allowing everyday Canadians to reach out and stand up, and is working to breakdown barriers faced by those who suffer from a mental illness. You can help raise awareness and funds by simply sharing #BellLet’sTalk. By doing so, Bell will donate 5 cents every time it is Tweeted, texted, mentioned online, or when you use the bell network, so call, Tweet, text your hearts out for mental health.
Be Well XO
If you or anyone you know is in crisis, please call 911 or
Operated by various agencies. When in need of someone to talk to. Open 24 hours a day (unless otherwise indicated).
Toronto Distress Centres (416) 408-4357 or 408-HELP
Today is Pride (at least was a few hours ago) and on a day where everyone is celebrating coming out of the closet, I have gone into mine for a long over due clean out. Both literally and metaphorically.
As I painfully try-on every stitch of clothing I have, I am coming to the realization that there is way too much I’m not wearing, way to much that doesn’t quite fit, and way too much that’s way too small and as I look at the piles that have formed on my bed I realize that I’ve been holding on to these things that don’t serve me and actually burden my life too hard. It dawns on me that when you hold on to something too tightly, there’s no space for anything else. This can be clothes or thoughts or identities.
This past year has probably been the hardest I’ve ever had. Harder than when I was diagnosed, harder than recurrence, harder than when my father was sick and dying, and even harder than all the years living through his alcoholism.
This year I have really struggled with my mental health. The following will likely come as a shock to many in my life who care very deeply for me and I want to assure you that I am in counseling and I am on medication, and would never ever actually hurt myself. I am also very sorry you are reading this rather than hearing it from me personally. Some things are impossible to say face to face and can seem easier to write it down, trust me its not. Up until this point I have hidden this admission from almost everyone, including myself.
My internal dialogue this year has been different than in the past. Lately I have asked myself many times “what am doing this for?” (as I take my trial meds) or tell myself “I just want to crawl under a rock and die” or “I wish I was dead”. Scary thoughts. Logically I do not want to die, I want to live. In fact I want to live in vivid colours, openly and honestly. Admitting to myself that these dark thoughts are happening is a start. It is the number one thing I will address with my psychiatrist, because I want to live.
So whatever the skeletons are, go into the closet and bring them out. Shine the brightest light on those demons and then let them go. Let them go so you can embrace life.
To all my friends celebrating Pride, have a great day and always be proud of who you are and what made you.
To all my friends celebrating Eid, may you have a blessed day.
Intentional magic describes the alchemy that happens when you bring together a group of random people (who happen to be between 18-40) that share a common experience. That the common experience is living through or with cancer. You’d never know that was it, at least by looking at us. Young adults with cancer making lemonade from our lemons. Cancer is different for young adults.
When you are a young adult that has been diagnosed with cancer, it changes your life profoundly, in ways you don’t even know yet, and won’t know how far the ripples reach until you are looking over the wreckage of your life. It changes everything. It changes who you are. It changes who you will become. Nothing is the same as it was and nothing will be what you thought or planned for. Now add in that most of the patients in the waiting room are your parents age or older (yes I had medical staff talk to my mother instead of me and have had to correct them). That the majority of funding for support, care and treatment is focused on 45+ or 18 and under. That you will likely never get insurance, may never have children or will suffer from reproductive difficulties, are at risk for secondary cancers, and feel isolated and alone in an experience that few will share at lease at this age.
Now put these people all together and its magic.
As a young adult with cancer and a rare one at that, I can attest to the feelings of isolation and loneliness, confusion, frustration, grief, anger and sadness at losing the trajectory I had planned for my life. I have mourned my fertility and financial security. I have feared for my life, and sometimes still do. I know scanxiety, and loss. So much loss, my own and of others. Too many to count. It physically hurts to count, the beautiful vibrant lives this community has lost. I know, and so do those at Young Adult Cancer Canada. That’s why they are wizards. They create this intentional magic every year and every year its a homecoming for me. Every year we gather as a group to learn, laugh, cry, dance, and remember.
It has been about a week since I came home from my trip to Newfoundland for YACC’s Fog Cancer conference and I have say it has been a challenge getting back into the swing of things. I normally expect to experience withdrawal, but this year it seems even harder. I don’t know why, maybe its because I just turned 39 and I fear my time in this incredible community is winding down, or maybe I over extended myself, or maybe I fear that one day it will be me being remembered up on Signal Hill. Whatever way, life hasn’t been as vibrant and comfortable as it was a week ago. I feel a little more alone, a little more isolated, a little more mired in my own crap. I miss the cocoon of just getting it.
It’s Mother’s Day today and I have to admit that it can be a bit of a challenging day for me. As progressive as I am and know that one is not defined solely on one aspect of their life, not being a mother is well a mother. After all it’s a day explicitly for celebrating our mother’s, but what is a mother?
Babies are popping up everywhere, and kids are extra cute at least it seems so especially today. There is nothing like other people’s joy serving as painful reminder of the things you cannot have. Please don’t get me wrong, I am overjoyed for their happiness and the blessing of that new life, but it’s just that it’s an in your face reminder that I will never be a “mother” and some days it just feels like cancer just robs you of everything.
For a while I thought that this sense of loss was more about feeling what it is like to be pregnant than actually being a mother, but I now know that it is the whole cycle of life that I am missing out on.
Early on in my diagnosis, I had the wherewithal to ask about fertility preservation. I was referred to an onco-fertility specialist literally days before my first treatment. I remember vividly sitting in the Dr.’s office, thinking I had everything under control until “harvesting, embryos, and sperm donors” were mentioned. I actually started having a panic attack. My head swam with questions, “What if I meet someone and they don’t want my sperm donor embryos,” “What kind of qualities do I look for in a donor”, “What do I do with my embryos if I don’t use them?” “I can’t donate them, pieces of me will be out there, but I don’t know if I can destroy them,” the thoughts were consuming.
Breathe, just breathe I thought.
My saving grace was my oncologist deciding that there just wasn’t time to delay three weeks to harvest my eggs. So they shut my reproductive system down while I did chemo. It seems strange to have such a monumental decision made for me, but it was a relief that I didn’t have to decide, I realize now, I wasn’t ready and as much as I wanted to consider the options, the truth was, there wasn’t time and I didn’t have anyone to turn to for unbiased advice.
After treatment was finished, I saw the fertility specialist again to revisit whether I wanted to harvest and preserve my eggs. At that time, I decided that I would harvest eggs, but I didn’t have the finances to proceed and although I would be getting the cancer discount of 50% off the regular price, I waited.
Once again, the decision was made for me, my cancer was back, this time it had spread and I realized that I might not get out of this alive. Parenthood would have to be something that was sacrificed in order to save my own life. Even though it’s now eight years later and I am stable and married, my choices are still limited to acceptance of my infertility, except now I am actively trying to prevent pregnancy.
It is amazing how things can come full circle. Having the option of being a mother taken away from me made me want it so much more, but having been through treatment and knowing I will live the rest of my life with cancer and the possibility of recurrence or progression at anytime I am steadfast in deciding not to have a child. I mean, how can I possibly put a child through losing their mother, or risk passing on my faulty genes or risk my own life just trying? Had I never encountered cancer, I wouldn’t have a problem trying to get pregnant at 39, but that is not the case.
Even if I could get pregnant, my ovaries have been exposed to so much radiation from scans and treatment my eggs would be fried, they have been exposed to systemic chemotherapy, and they are 39 years old, the odds of having a healthy pregnancy is not be in my favour. As it stands, the treatment I’m on counter-indicates pregnancy. The drug inhibits a protein (ironically ALK) that is used during fetal development and the effects on a growing fetus are unknown but likely detrimental. I could stop treatment, but that would mean I’d have to stop my meds for as long as it takes to clear out of my system, plus the time it would take to get pregnant and finally another nine months until delivery. I might be lucky enough have the cancer not grow or grow slowly enough to make it to delivery and restart treatment, but then there are no guarantees that I’d respond to treatment again. It would be playing Russian roulette.
Maybe it is a selfish decision, maybe it is for the best, but there is nothing like holding and smelling a new baby to make you doubt your decisions. I don’t know what it is about the new baby smell that triggers every cell in my biology to want a baby, but it does and it’s hard to resist that siren’s call. For a long time, I couldn’t bring myself to attend baby showers or even hold a newborn because it was so upsetting, but I have gotten better. Knowing something in your brain doesn’t make it any easier to knowing it in your heart. I don’t regret any of my decisions and it has taken a long time to get to a place of acceptance. I still have my bad days, today is one of them.
I am very lucky though, I am healthy and happy and have a wonderful little family (Me, my Patrick and all the fur babies, Lacey, Finn, Mischa and Borat), and have been blessed with a most incredible mother who raised and cared for me (still does) in good times and in bad and taught me how to be a strong woman. I have a wonderful mother-in-law who is kind and thoughtful and who so openly embraced me as a daughter and know through her son what an amazing mom she is. I have so many women in my life who inspire me to be great and to do great thing because of their example of sacrifice and grace. So I don’t have my own biological children and never will, but I have known the kind of love it takes to be a mother.
To all the would be moms and mothers who have lost children, adoptive moms, and surrogate moms you deserve to be celebrated today too. So to all the mother’s out there in whatever way you are defined, Happy Mother’s day to you.
Today is May the 4th and for us Star Wars Fans out there it’s Star Wars Day and boy did I did feel at one with the Force. For a short time today I was truly happy because I was finally able to see my Oncologist and not one of her fellows (even though they are all lovely and very competent) because it’s just not the same. For months now, I have been struggling with being just good and not NED (No Evidence of Disease), it’s been quite an ordeal. This is in part because I have had access to the scan results and the fellows (bless them) have been saying “it looks good, no change,” the reports of course say that the nodules in slide x remain unchanged, so of course I see remain and think “well there’s cancer there!”
It was a tough pill to swallow (literally pills) going from being a super responder on Xalcori (yes its a thing) to just being good. For an over-achiever, this is not ok, especially when Lorlatinib is supposed to be a better drug. Well today I found I wasn’t just good, I’m a super responder and I’m NED!!! Hooray!!! So all that worry and mental gymnastics for nothing. Now that I’m relieved for myself, I can channel my energy into outrage for my friends in the US.
Maybe you haven’t heard or don’t know that the Republicans and the House of Representatives voted to support a heinous bill to replace the Affordable Care Act (AKA Obamacare). They voted despite not knowing if it would save lives or harm people. If you are looking for impartial, you won’t find it here! Many and by many I mean millions of people will have to pay tens of thousands of dollars more to even get insurance or care based on their pool.If I lived there I would be in the two to tiers and would have to pay at least 150K a year and that doesn’t accept for the expensive pill I need to live. Even if I was at the top of my pay grade this is way more than I could afford, so without it I would die. Thats what my friends are facing. It sickens me! It also makes me so incredibly thankful that I was born in and live in Canada. Our system isn’t perfect, but you can bet your ass that if you’re in trouble you will be guaranteed care.
I wanted so much for this post to be happy and for the most part it is. I wanted to just update everyone and summarize my weekend at the DC Hope Summit, but the more I think about is, the sicker I feel.
Last weekend I was so incredibly priviledged to be able to attend LUNGevity’s Hope Summit in DC through a donor scholarship (and the very hard work of resident hope dealer Katie Brown and everyone at LUNGevity). It was an incredible experience! It’s not often that one is able to meet so many others like me. There were people from all stripes, young, old, survivor, supporter, newly diagnosed, those who have been around the block and everything in between. Before this, I couldn’t have even imagined having 340 other survivors and caregivers in one place. It was truly beautiful and tragic all a the same time. Beautiful because there were so many of us, tragic because there was so many of us. Its complicated.
I almost always need a few days to decompress and process my experiences because they really are massively emotional experiences, and I say that in the most positive way. There were so many ALKies like me, and ROS1ders, those with EGFR, Cmet and those without a driver mutation, regardless of who you were, there was someone there that knew and understood your experience.
All the YA’s except me oops 😦
Young Adults W/ LC
It was just wonderful to see everyone talking and sharing, crying and laughing, taking hope from hearing someone else’s story and sharing their own, maybe empowering someone else. Many new advocates were born over the weekend and some old ones refuelled. Now, more than ever, they will be needed.
I have always marvelled at the close knittedness of the lung cancer community (so many of us knew each other online before ever meeting face to face) and how much sharing happens, how much progress is being made with so little. So little attention. So little funding, and yet research has happened, awareness is happening, action is being taken and people are living better and starting to live longer. But there is still a long road ahead. But we are just starting and bills like the AHCA is a massive setback to us and to all others who are vulnerable and live on the knife’s edge. So my thoughts are with all of you who hoped for the best, and are hearing the worst, resist my friends. Resist with every breath.