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.
Happy Easter Fool’s Day. I hope all my readers and friends had a lovely day with loved ones, and to all those who celebrated Passover, Chag Pesach Sameach.
With spring comes change, so I have decided to take a chance and do something unexpected. I am starting a new business.
It’s no joke! I am now a Jamberry Consultant. Don’t know what Jamberry is, I’ll tell you what it is. It’s genius!
If I were to actually tell you all the supremely cool things about Jamberry I’d literally be here all day. I will say they have revolutionized the beauty industry and turned it on its head!! Manicures that can be on-trend or customized to your personality and can be changed as often as you like or up to two weeks later and don’t break the bank. I mean it!! Their nail wraps are easy to use, and cost a fraction of a salon manicure!! But they aren’t just nails, they have hair care, beauty, and, see. I have started rambling!!
As it is, I’ve been trying to think about how to announce this. Considering what time it is now, You can see I wasn’t very successful. So I won’t beat around the bush, if you know what Jamberry does or if you don’t and are curious, I will be having an online party starting on April 13th, so stay tuned for that. I will also be hosting a small gathering on April 15th, but if you just can’t wait, you can always check out the amazing spring wraps and new goodies launching today and Put a little jam on it and check out my site, you’d be a fool not to 😉 (no more April Fools jokes I promise).
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
On this day 8 years ago, I had my last chemo infusion. Sure I’ve had lots of treatment since then, but no more chemo infusions. So as I sit here at the kitchen table, surrounded by those I love, snow blanketing everything, I silently give thanks for all that has happened since that day, and a lot had happened! So much so that if I wrote it all down, I’d be missing out on the laughter surrounding me. Suffice it to say, I am blessed immensely and have been, in good and bad.
So I’d like to take just a moment more and wish you all a Happy Holiday, whether you celebrated Hanukkah, or will celebrate Christmas, Kwanza, or Festivus. Be safe, be happy, be well.
About a year ago, I wrote about Awareness and Action, That they are vastly different things. One is the actual act of something, the other is passive, and involves doing nothing. That’s right, nada, Zilch. Zero things are done. Bupkis. So in the dying hours of this Giving Tuesday, I want to remind people of just that. We should act and give, not just today, because we have been sold on a “gimmick”, but because we want to. Often even every day. It can be big or small. It also doesn’t have to be money, it can be time or a good deed. We have gotten too used to throwing awareness around, that nothing really happens. Lots and lots of inaction.
So why do we need a reminder?! Goodness and giving should be a no brainer, right?!
Is it that we get so wrapped up in our own drama, that we don’t see, or make time? Are we keeping score? If we are, then we shouldn’t, because life owes us nothing.
So I’m reminding you, Awareness is great, be aware, but also act.
I’m leaving this here, because I have to.
Be kind. Be good. Be present. Be generous. Give. Be well.
November is Lung Cancer Awareness month and tonight is Lung Cancer Canada’s annual Casey Cosgrove who was the MC and truly synonymous with this night. Casey was such an integral part of this organization and made a huge difference to so many people dealing with lung cancer by not only sharing his own experience but by being a relentless advocate for the cause. On a very personal level he was a dear friend who I admired and miss very much. My heart is hurting.
Tonight won’t be the same without Casey but we will carry on best we can and try to continue the work he was so passionate about.
The above was written by my dear friend Roz Brodsky (A 3x lung cancer survivor), her words captured my feelings so well, that I asked to share them.
I wish I could say that “if you didn’t know it was Lung Cancer Awareness Month, you’re living under a rock!”, but that is not the case. Most people I have asked were surprised. Well of course they were, we don’t have white/pearl/clear ribbons everywhere. We don’t have cement trucks with our message spread across it; we don’t really have walks, or Runs for the Cure. What we have is misinformation, apathy, and inadequacies.
I can’t tell you how many smoking cessation ads I have seen. Horrible in their depiction and so stereotypical that they add to the stigma and apathy. I am all for helping people quit, I personally believe we should treat an addiction, like an addiction, not a bad habit. I also think these ads should be part of a campaign strictly for cessation and illustrating ALL the diseases it is a risk factor for.
The sad part of associating these two things is that patients like so many others, and myself have to defend ourselves or tell people we are “Non/never smokers”. We shouldn’t have to, because we both have the same thing in common, lungs. The point being, it can happen to anyone at any age.
I have been radio silent this #LCAM because I have so much to say, but am so discouraged and tired of banging my head against the wall. I don’t know what it will take? It’s not the lives lost 1.59 million globally, or as my friends in the US will tell you #433aday, which is the number of Americans that die daily from this disease. We would take notice if a jumbo jet plummeted to the ground, right? Why can’t we see that this is happening daily!
I have posted a statistics laden post the last few years; I’m not going to do that again. What I leave you with is, that Lung Cancer unbiased, it comes for everyone, regardless of age, sex, creed or colour, because we all have lungs. Anyone can get lung cancer.
I have been struggling as of late to summarize and put to words my trip to Japan, so I will post that in another post, until then, please read this. Lizzie was a tremendous spirit and although I had only ever spoken to her via email and phone, he passing shook me to my core.
As Lizzie’s mom, I have had the privilege of writing on her blog twice before today. The first time was after her surgery, and what a great day it was. We had so much hope.
July 1st 2016Three days after Elizabeth’s surgery, one day after Jack’s first birthday. Both milestones she was so grateful to achieve.
The second time was is Boston when Elizabeth was beginning a new trial drug. We still had hope.
Today as I write this, I am reminded how Elizabeth could find hope in the smallest things, in the most difficult times. For those of you not aware, Elizabeth passed away peacefully on Feb 25, 2017. When you love someone as much as we loved Elizabeth, you believe you can protect them. To say we were blindsided by this terrible disease is an understatement. Elizabeth had an incredible will to live, and so much to live…
So today is the big day, day one of the IASLCs World Lung Cancer conference! After a few days getting our feet grounded after so so much travel, I’m ready to report!
So far it’s a busy day (what an understatement). I type this as I wait for my second big session. I’ll be back later with a summary of my day, and a few highlights of the conference’s first day. Until then, you can keep posted by following on Twitter (@thesearemyscars, @iaslc, #WCLC2017, or #LCSM, or Facebook).
Sorry I can’t live link, but I will later on. Blogging by phone has its limitations!
I write this as I am waiting to taxi out on my connecting flight to Tokyo. I am on my way to the International Association for the Study of Lung Cancer’s global conference, an annual gathering being held in Yokohama this year. In my pervious posts, you will have read about my excitement, so I’ll refrain from repeating myself.
What I will say is, thank you!
Thank you to all the people who contribute and organize World Lung. Thank you to the researchers, those in clinics and those behind a microscope in the lab. Thank you to the oncologists and their teams, to the nurses and social workers, and the army of people who chose to work in the field of lung cancer. Without you, I wouldn’t be writing this, or writing anything.
I am so greatful to the IASLC for being an excellent resource and for opening their conferences to patients, but for also having an award that helps patient advocates with limited means attend. If it weren’t for this generous award, I would not be able to attend. I would be at home, glued to twitter waiting for the latest developments in lung cancer research and care. Of course I have a vested interest in what’s going on at a “World Lung” because it tends to be where patients like me, living life line to life line get our info. That is, if we aren’t already in a clinical trial. It may sound weird that I’m excited about exons, translocations, and serum diagnostics, but that’s where all the juicy details are being studied, that is a gross understatement! There is so much incredible research being done in lung cancer.
So as the stewardess asks me to turn my phone to airplane mode, I ask you to keep tuned here. I am hoping to post a daily summary of the things I have gotten to do (I can’t get to everything, that would require cloning.). I hope to be well rounded and share not only the patient experience, but the science and social events as well.
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