Dollars and Sense

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…

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?

Its not always sunshine and roses

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…

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!

 

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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).

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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.

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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

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!!

Personal Update #2

As I write this, I sit in a room at Princess Margaret Hospital waiting for my first dose of a new-targeted therapy. The one I had been on, the one that gave me almost five years, the one I had grown used to, stopped working well and now it is time to move on. Quite literally now. The thing is, I almost didn’t make it to my appointment today, a day I have been waiting weeks for, the day I have been scanned, biopsied, MRIed and ported for and it all almost didn’t happen. That’s because last night was a bad night.

It got so bad and scary for me that I almost called an ambulance. Almost. You see I have had this pesky cough for a few months now. I first thought it was due to seasonal allergies because mine have been raging all year. I tried dealing with it myself but since it didn’t get any better, my medical team is monitoring it and we have tried numerous things to try to get rid of it. It seemed to have worked until I came home from Chicago with a head cold and then it reared its ugly head again. This time worse, this time I strained my entire back coughing, this time so bad it made me projectile vomit, which made it scary.

I haven’t been scared in a long time, the last time was when I recurred and thought I was doing to die, but since then I’ve been ok. Last night being the exception. Last night I realized that this cough wasn’t what I thought it was, an innocent cough related to my allergies, or a head cold, but related to my cancer progression. It shook me. As I sat on my bathroom floor hacking gasping for air while I threw up all I could think of through the stabbing pain in my chest, ribs, and back was I’m going to asphyxiate on my own vomit and die…and this is how Patrick will find me.

When the vomiting stopped, I had a vasovagal reaction (a little thing that I equate to the feeling of having a mild stroke – you get weak, sweaty, feel like you are going to puke and shit all at the same time #Funtimes) that just ratcheted up my anxiety so I thought I should call an ambulance…but of course I didn’t, I calmed down and tried to go to sleep because damn it I’m getting my new drug tomorrow!! Sleep didn’t come easy though, I struggled with getting comfortable because my back was killing me and then I kept having thought fits. I must have managed a few winks because as the sun rose, Patrick jumped out of bed to wake me up; we slept through the alarm, Great!!

Bleary eyed I got into the car and down here an hour late, and another two hours waiting for blood, but finally I am here. I told the physician during our examination and again after mentioning the cough and the events of last night, he added fuel to what I feared most, that this cough is due to the progression. Nothing certain of course, but nothing to rule it out either. My body was betraying me again!! After all these years of learning to trust myself, learning to control my fears and take control of my anxiety all disappeared in one betrayal. Never in this whole time have I had a symptom of cancer, not in seven years! Now after all these years betrayed. How do I re-learn everything? The seed of doubt has been planted…what if this doesn’t work? What if this bloody cough doesn’t go away? Where do I start again?

LocaLife T.O. & Writer’s Unblocked

It is pretty amazing how powerful it is meeting other Young Adults with cancer!! Last Thursday (Aug 2) I participated in YACC’s first LocaLife event for Toronto. To my surprise, I walked into a patio full of new faces; I can’t tell you how happy that made me. I know, there is irony in finding happiness in this situation, but after spending a year in treatment and not meeting any others like me, to see this community growing and uniting is incredibly satisfying. I truly wish that there wasn’t so many of us out there, but there are so its nice to know we are finally connecting and sharing our experiences!!

I have been attending a Toronto support group for 20’s and 30’s, but there’s never been that many YA survivors in one room before, so I was pleasantly surprised by the numbers. What was great about this event was that it was a casual gathering of people with a shared experience. It wasn’t a therapy session or a highly structured event, but one where we could mill around and connect with familiar friends and meet new ones. I left that night feeling energized and full of hope, so much so that my writer’s block finally became unblocked!!

I have been floundering and stagnant for the last month or so. I had a million ideas, but when I sat down to write, nothing came. I struggled for words to expand my ideas. The magazine suddenly took a back seat and I felt like I was failing, myself and my community! I was desperate to overcome this block, but didn’t know where to start. Previously I had been able to sit on my computer and within 20 minutes have a clear and coherent piece of writing, so not being able to continue doing this was extremely frustrating! What I didn’t know was that simply letting that frustration go and go with the flow so to speak was what I needed. I think this meeting on Thursday was exactly what I needed to recharge my batteries and find inspiration again!! So thank you to out T.O. LocaLife leaders and to YACC for hosting a great event, and thank you to my new friends for inspiring me to keep at it!!

AM