Blog

Acting on Awareness

These are My ScarsLeave a comment
img_4492
Fall is coming

There’s a crispness to the air that signals Summer’s end. Days are getting shorter and the season of awareness is upon us.

I’m tired of awareness. I mean great, we are aware. So what! I’ve learned that being aware of something doesn’t mean one will act. Now there’s where change happens whether it’s research, funding for research, support locally/provincially or federally for programs, better diagnostics, less invasive procedures, whatever, change takes action!

I think it’s safe to say we are all aware cancer exists, and depending on what day or week or month it is which one or ones we are supposed to be aware of or we’d be living under a rock. But what of it? Are we actually doing something about it? Do we call a local cancer center to volunteer? Do we check on our neighbour who’s I’ll? Do we sacrifice our precious time for a cause that has touched us? Or are we simply aware that something exists?!
Action doesn’t require a lot. We can do in small ways. After all, the only way to eat a cake (mmm cake) is one bite at a time. So why is it that acting is so hard?

Often I think people shy away from action because they think it will take too much time. Or they thing that the problem is too big and that one small act of kindness won’t really make a difference. They are wrong.

How long does it take to say hello? How long does it take cook a meal? How long does it take to check in on a friend?

Oh look you have acted.
Change happens with small acts. Before you know it drops in a bucket turn into floods of action.

Ways you can act*

  • Yard work/house work for friends/neighbors
  • Driving friends/family/neighbors to appointments/to get groceries/whatever
  • Babysitting/ driving kids to school/sports/daycare
  • Volunteering
  • Lobbying for change
  • Donation money/goods/time
  • Being supportive by listening and being a friend

*These don’t have to be cancer related either.

So in this season of awareness, act!

If you really can’t act and want to use your wallet (also good) try to support causes/organizations who use a majority of their funds to actually do what they say. So many big organizations (I won’t mention names) have a great warm and fuzzy cause and are very visible but use a lot of their funds to cover their over head costs which means those they are there to serve don’t see a lot of those donations. Sometimes small causes/organizations can and will do more. Sure you have to look for them but if you really want to make a change sometimes small and grassroots is where to go. You can if you are savvy see where the money goes.

AM

Cover Girls

These are My Scars1 Comment

We can go through some truly horrible times with this terrible disease. So it is truly wonderful when we can see news like this. I am so very happy for Emily and her husband. I encourage anyone out there who is newly diagnosed or those of reproductive age dispite treatment to ask your health care team about what your options are for fertility preservation/treatments. Often reproductive health is overlooked when cancer seems so much more important, but it is a very important area of life that we may not want to close the door on. Congratulations EmBen, wishing you all happiness and health.

EmBen Taylor's avatarEmily Bennett Taylor

I am honored to share with you our Cancer Today cover story! cancer-today-coer

Over a year ago, Senior Editor Marci Landsmann read my surrogacy blog post, and contacted me about telling our story. She wanted to focus on our quest for fertility throughout our cancer journey, and after a few interviews, said she’d be in touch for an update once our future children were born.

Shortly after Maggie and Hope arrived, Marci reached out again, and talking with her was like catching up with an old friend. I am extremely grateful for the candid, beautiful, poignant way she told our story.  I’ll admit she made me cry…several times. This story will forever be cherished by our entire family, but it will also provide courage and hope to cancer patients as they struggle to realize dreams of their own families. Thank you, Marci.

fullsizerender_3 Hey girls, look what came in the mail today!

Also a big shout-out to the…

View original post 82 more words

Dollars and Sense

These are My ScarsLeave a comment

I have a confession to make.

I am an emotional spender. I spend when I’m happy, I spend when I’m sad, I spend when I’m angry, and I spend when I just can’t deal with my shit.

I have never been good at staying within a budget, let alone making one, but it is no excuse not to learn. Money has always been my Achilles heal I’ve just kept it hidden. When I was working, living paycheck to paycheck was my MO, and I could afford to do it, I didn’t want to, but it always seemed to work out that way. Once I got sick and took a hit to my finances, I spent a little less because I had other expenses like meds and gas to pay, but there way always plenty to use for my own mischief, enough to save for a car, enough to travel, enough to invest a little. It is different now.screen-shot-2016-09-21-at-9-19-38-pm

Now it isn’t just me. I am part of a team, an us. For a while, I forgot that and went back to old bad habits. I was selfish and even though I thought I was doing good for us, I was really fulfilling my wants, not our needs. As a single, I could spend my way into “happy” oblivion and not have anyone to answer to but myself, now I am part of an us and irresponsible spending can leave us homeless.

Now I or rather we own a house. A big honkin’ pile of debt, screen-shot-2016-09-21-at-9-32-29-pmsomething I was unfamiliar with, or at least up until now able to earn my way out of. It wouldn’t be such an issue if I could just go back to work, but as you know from previous posts its not that simple.

It is expensive this thing we call living, so if regular folks are having problems with managing money and debt, you can imagine what its like for someone who is chronically ill, disabled, or has cancer. I always thought it was just me, that I couldn’t live with in my means, but apparently many are in the same boat. According to The Canadian Payroll Association 48% of Canadians are living paycheck to paycheck, by choice or not1.
So with my confession comes a plan, a plan to get my shit together and learn to be financially responsible and debt free.screen-shot-2016-09-21-at-9-15-35-pm

Step 1: Come clean – Very hard and embarrassing to do, but it is a necessity. Your partner needs to know what the money situation is. You are a team after all and honesty and open communication is key to a healthy happy relationship. If you’re a single then ask for help from someone you trust.

Step 2: Stop spending and figure out what’s going on! – For me it tends to be crushing life events like death, cancer, or my death and cancer that spur on a spree. What ever the reason behind the spending figure it out and deal with it.

Step 3: Keep track of spending – Save all bills or write all spending down. I mean it! Every single cent! You need to know where and how you are spending your money.

Step 4: Budget – Now take all that juicy information from step 3 and look at spending patterns. Make a list expenses. Determine what is a necessity or a want. Now calculate your income or any money coming to you. Take that amount and allocate it to your expenses first. Then take what’s left over and allocate a portion of that to your wants. The rest goes in the bank. I know not so easy. But we can do it!

Step 5: Follow the budget – Here is the really hard part, actually sticking to it, because there’s always something that comes up. A birthday or a party, or Uncle Bob is in the hospital, but that is life, something is always going to come up. If we do this right, it won’t matter what it is, we will be able to everything we want and more. Its this first bit, where we will learn to exercise restraint and maybe say no or come up with cost free ways to celebrate, or even cut costs in areas of our lives. I can tell you that my consumption of cheese has drastically reduced as has my shopping, only necessities!

Step 6 Review and revise – As time goes on and habits change or as savings increase and debt decreases, revision will be necessary. After all, these things aren’t written in stone!

screen-shot-2016-09-21-at-9-38-46-pmListen, I’m no professional and this is my two very flawed cents, so anything I say here is not and I repeat not advice from a professional. This is my way of learning and holding myself accountable. For those who want to join in this exercise, I will post what I’m doing and the tools I’m using to get through this process. Otherwise, please seek the help of professionals.

Until next time

AM

Reference: www.payroll.ca/cpadocs/2016/National_FINAL_EN.pdf

Time…

These are My ScarsLeave a comment

Here I lay in the wee hours of the morning of the first day of school. Like many, I couldn’t sleep, my mind whirring away.

I should be getting up and ready for my first day of a fresh teaching year like many of my friends today.

I should be preparing myself to welcome familiar little faces full of excitement, anticipation and first day jitters. Little people ready to regale me and their classmates of their summer adventures, ready to jump into new adventures.

I should be, but I’m not.

I’ll be home for my 6th year on leave.

I miss teaching.

I have thought of returning, torn myself in two trying to make a decision one way or the other, but the decision has already been made for me really. My treatment has decided, or rather how my body reacts to it decides.

In previous years, I was so plagued by fatigue that I thought I could never make it through the day, let alone attempt any kind of job, let alone teach, so I stayed home.

Now I’m bursting with energy, I hardly know what to do with myself! My limiting factor is the edema in my hands and legs that impede me from being as spry as I was, so chasing a class of 6 year olds might be a bit tricky. My cognition isn’t so hot right now either, I’m so forgetful it drives me crazy. So returning to school is not in the cards, now or in the future.

Those are the trade offs for time.

Time. What do I do with the time?

Nothing is dead down here just a little tired

These are My ScarsLeave a comment

Last night I watched one of my favorite bands retire. It was quite an event. The Canadian Broadcasting Corporation cut their coverage of the Olympics to show the concert held in Kingston Ontario. I’d say that’s a pretty big deal! Tonight we Canadians collectively came together in our Cities, Towns, and homes to watch one last show, to sing, to dance, to cry and to mourn.

When I first learned Gord Downie of The Tragically Hip was diagnosed with a terminal glioblastoma I was heart broken. I knew what was ahead for him, his family and his friends. I knew the long days at the hospital, I knew the poking and prodding, and I knew the anguish of the words terminal cancer, because I too have been there. Ironically at the very same hospital.

Seven years ago, I sat in the same chemo ward to receive my treatment, and I listened to Gord and The Hip to get me through the long days spent hooked up to an IV. I let their words and sounds wash over me and transport me to another place. To small town Ontario or a coudoroy road in central Canada, I let Gord tell me stories. I wonder, does someone do that for Gord?

I had been a fan long before The Hip got me through cancer. I loved them because they made me feel incredibly Canadian and proud to be so. I have even been fortunate to see them live. So I was crestfallen when tickets to their final shows had sold out in minutes. The truth is, I don’t think I would have lasted through a two-hour show, so my couch is the ideal place to say goodbye. I’m not very good at crying in public.

It is truly remarkable that the band are touring. It was a sight to see Gord perform a 3 hr. concert when some days I can’t even walk down the stairs. Mind you I have been doing this dance for 7 years and my feet are tired. Although more subdued than I have seen before, he was pretty on point, I don’ t know how he is doing it! I don’t know how he is holding it together. But then it happened, the scream. The scream we heard across the country, the scream every cancer patient has had, the scream where all the emotion just pours out of us.

Most of us scream in private, he did it publically very, very publically and it was beautiful and heartbreaking. I felt it through the TV and I cried. This primal expression of sheer emotion pierced my heart and I remembered that I was dying too. I have been dying for a very long time thanks to breakthroughs in research in the area of lung cancer. Those breakthroughs can’t happen without money, sadly lung cancer funding is sorely lacking, so is funding for brain cancers.

Through his diagnosis and this tour, Gord has become a one-man awareness machine and is raising a boatload of money for brain cancer research. His death will likely save many lives through the funds raised. Most individuals would focus on themselves in situations like this, I did, and many I know did. You can’t help it. Gord Downie didn’t. He did the exact opposite. He created a fund, wrote and recorded an album, and then toured across Canada to say goodbye to fans in what is the most epic living wake possible, culminating in tonight’s show.

I want to go out like him, with skill and determination and grace too.

 

 

 

 

Why do I feel so bad for feeling bad?!

These are My Scars1 Comment

I hate to admit it and usually I wouldn’t and don’t, but here it is. I am struggling!

At least I feel like I am. Normally I would keep all this to myself and just bury it and I really don’t have a good reason for sharing my funk, but for some reason I feel compelled to do so. Even as I type, I hesitate. I fear that those that read this may think I am being negative or that something is wrong.

I don’t have a good answer to why I’m in a funk, but I am. Despite my husband desperately trying to pull me up, despite having a great weekend in Ottawa, despite getting good results back from my first CT. The drugs work, my tumors are shrinking and I’m still feeling down.

Maybe its because my edema is bad and I can’t seem to get it under control. Maybe its because my joints ache and I can barely get down the stairs. Maybe its because I’ve been cooped up all summer thanks to the hella hot and humid days. Maybe it because we are house rich and cash poor and I really want a vacation. I really don’ t know.

Those reasons just don’t seem like good enough reasons to be mopey though, not when you know people who are living their end days, not when you know children who won’t have mother’s, not when you know people who don’t have any options left. My crap is trivial.

I don’t know why being down or negative is such a bad thing, but I do know that when I feel that way, I feel guilty. Even my last piece for CKN bordered on the negative. I was hesitant about writing that too. But why? Why can’t a girl wallow?

I’m not advocating giving my mood a postal code or anything, but why can’t I just be mopey and pissed off for a little while, no questions asked, no concerned looks, no judgment (especially self judgment). Why do I feel bad for feeling bad?!

Its not always sunshine and roses

These are My Scars2 Comments

IMG_4004Life is hard enough under normal circumstances, but you get thrown into the lion’s den when you are diagnosed with cancer. Its something that changes you forever, whether you want it to or not. The diagnosis and the fallout usurp every fiber of who you are before cancer. If you are lucky, you get cured, but you can’t forget. Some of us are able to shake it off or move on and become survivors. I am not one of them.

I am not a survivor. I am clawing and groping my way through this. I am a liver. Everyday I live. Living is hard. Some days when I am lucky, I live very well. I wake up and I am refreshed and ready to take on the day. I don’t resent taking the pills that keep me alive and I happily gulp them down and start my day. I don’t hate my achy bones and I don’t frown at the image I see in the mirror, because it’s full of life and joy. I go out and take on the world like I own it, then come home and fall into bed feeling fully satisfied, and not once throughout the day do I feel like I have cancer. I sleep soundly. Those days are rare. Like a purple unicorn with a four-leafed clover rare.

Most of my days are quite different, I often wake up tired and achy. I’m sluggish and struggle to get through the day, despite the list of things to do. Cancer is almost always on my mind. With every ache, cough and bout of fatigue, I am reminded. Yet I claw and crawl and live.

Living with cancer is exhausting, you never get a break. There are no days off. It is an ongoing slog up hill, sometimes you get a reprieve and there’s a rock you can sit on, but you can’t sit long, because rocks are uncomfortable and you know you need to keep going.
Often that is exactly how it is. One foot in front of the other, wash-rinse-repeat. It is the only way to get through the day.

I have been living with cancer for over seven years and its great that I am alive to speak about it, but it isn’t without cost. It warps you. Your sense of self and how you relate to others is forever tainted by the experience of having and living with cancer. Living with cancer makes you myopic to the detriment of relationships and to our own selves.

It is a never-ending carousel of ups and downs and it is exhausting not being able to stop the ride. Maybe I sound pessimistic because I am in a funk, or maybe because I am waiting for results of the first CT on a new trial, or maybe its because I’ve had progression and I’m terrified that if this new trial doesn’t work I’m out of options, or maybe I’m tired, or maybe I’m just being real?!

Often times though I think there is an assumption that if you aren’t “sick” and “dying” you must just be fine and dandy. The thing is, we are “sick” and we are “dying”, just not yet. Most people just don’t or can’t understand this crazy life we live, how could they? We live in Bizarro Land! They don’t understand why we can’t commit to a vacation date six months down the road. We live scan-to-scan, doctor’s appointment to doctor’s appointment and we have been doing it since diagnosis. They don’t understand our dark humour. We joke about dying. If you can’t laugh about it, all you’d do is cry, I’d rather laugh. They think we are morbid; we talk about the songs they’d play at our funeral. I want a party, a full on party! I wasn’t a sad sop in life; I refuse to be one in death! The list goes on, and this is our life minus doctor’s appointments.

It can’t all be sunshine and roses, and I try to remember that struggling makes you a stronger person, that adversity makes you thankful for what you have. I have life. It isn’t an ideal life, but it is my life. It is a life that I am grateful for, that I will claw for, that I live for, as long as I can. I’m a Liver. I’m a Lifer.

** This peice was originally published on CKN (Cancer Knowledge Network) Aug 3rd 2016.

 

 

And sometimes life gets in the way…

These are My ScarsLeave a comment

Now I remember why I had a hard time blogging before. Life just gets in the way! I suppose that is a good thing, it means I’m busy doing and being. So let me update you on some of the doings.

There hasn’t been much change in life lately, it has actually been remarkably calm, which is a reprieve from the last six months, which were a whirlwind! Let me explain.

In February my husband (Patrick) and I took ownership of our very own house. Something I thought could and would never happen to me after getting sick, but there I was with keys in hand to my own little slice of heaven!

 

IMG_3400
Our slice of heaven

Almost immediately afterwards I began the search for a reliable and reasonable contractor to do the work we wanted to our home. Those who know me, know I’m a Type A, so I wanted everything done on a very detailed schedule and so far that wasn’t going my way. No shows, delayed appointments and “I’m too busy, maybe I can do it in August”, was how things were going.

Around the same time, a dear friend and fellow lung cancer survivor was going into her 3rd surgery and asked me to take care of her beloved doggies, how could I resist! All the while my own disease status was changing. For a few months, some very small spots began making an appearance on my CT results, and for those few months, we waited, watched and discussed what treatment might come next. We were going to be patient and cautious (very unlike me).

IMG_3694

 

As time ticked on we found a contractor and our renos got going and we started packing. Then unexpectedly on April 9th we brought home Finn our 2nd rescue dog. I have always been a softy for animals and when we heard about him a few days prior we knew he had to be part of our family. Of course we had talked about getting another dog once we had settled into the house, maybe in the fall or next year, but there we were and couldn’t be happier.

After spending an extra month in our apartment we finally were able to move, which was an ordeal in and unto itself!! I won’t go into detail but it gave me nosebleeds and spontaneous bouts of hysterical weeping. Thanks to my family, friends, and moving angels for getting us into our house.

IMG_3749

In mid May I met with Dr. R. my oncologist we looked at my latest scans, and it was decided that it was time to move. While I was busy moving he was busy doctoring and looked into a number of 2nd generation ALK inhibitors, some that have Health Canada approval but are not yet funded, and others that are in trial. There was a 3rd generation inhibitor too, that was the one we were looking at. Of course, that meant leaving the comfort of Lakeridge and going to swim with the big fishes at Princess Margaret. It meant I’d be entering into another trial. It also meant I would be leaving my care team of 5yrs.

The trial we wanted would be opening in June, and I would be patient #1. We scheduled all my preliminary scans and biopsy after my trip to ASCO (I know I still haven’t posted part 2) where I would actually learn about the drug I’d be taking. After getting back I was subjected to a barrage of appointments. CT, MRI, biopsy, ECG…but I started the drug.

It has been an interesting change. With the previous TKI (Tyrosine Kinase Inhibitor- AKA protein inhibitor) Crizotinib I had to eat a full on meal before taking it and couldn’t lie down for an hour or I’d be riding the porcelain bus. With Lorlatinib, I take it on an empty stomach once a day. Another major difference is I can now enter a bright room and not have an acid trip. My edema didn’t get better, I actually think its worse and I’ve noticed I seem to be more forgetful, but that could be due to the insomnia. Regardless of the challenges, I’m glad to be on the trial.

My first set of scans were completed last week and I am (not) patiently waiting to see the results. Anecdotally, it seems to be working, the persistent cough I had is mostly gone and the x-ray that was done 3wks ago showed or rather didn’t show a spot they had seen on my baseline. So I am hopeful and optimistic, but I am dying to see the real evidence. So I guess until then, I’ll have to keep calm and keep myself busy being and doing.

Until next time.

 

 

 

Update to the last Update ; P

These are My ScarsLeave a comment

UPDATE: I have taken my second dose and so far so good, breathing is better and my cough seems to be less intense. It could be placebo; it could be meds. I actually noticed a slight improvement yesterday too. Walking to the hospital from the car< I was very winded after going from the hospital to the car, I noticed I was ok. Today I can actually take a deep breath and not hack my head off!! WOO HOO HOPE!!