Personal – These Are My Scars

Dollars and Sense

September 22, 2016September 22, 2016 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-pm something 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-pm Listen, 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

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

Its not always sunshine and roses

August 11, 2016August 11, 2016 These are My Scars2 Comments

Life 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.

Insomnia

August 2, 2016 These are My ScarsLeave a comment

I lay here in the dark and quiet, my head spinning with thoughts and sleeplessness and I stare at their silhouettes bathed in the moonlight. We’re all scrunched in the bed and I’d have it no other way. Its silent but I listen. Finn’s snores break the silence. I close my eyes and smile. It’s these moments I’ll treasure.

And sometimes life gets in the way…

August 2, 2016August 11, 2016 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!

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 3^rd 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).

As time ticked on we found a contractor and our renos got going and we started packing. Then unexpectedly on April 9^th we brought home Finn our 2^nd 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.

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 2^nd generation ALK inhibitors, some that have Health Canada approval but are not yet funded, and others that are in trial. There was a 3^rd 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.

A Personal Update

June 16, 2016June 16, 2016 These are My ScarsLeave a comment

I’d like to apologize for not posting my ASCO day 3 & 4 Update, but since I got home it has been a blur of appointments and dealing with a pesky head cold that I seemed to have caught in Chicago. So I decided I would write a personal update since I actually have something to update after a very long time.

I have been incredibly lucky for the past five years to be on a TKI (Targeted Kinase Inhibitor) that has effectively controlled my lung cancer. I can honestly say that I didn’t think it would work so well for so long, but it did and it has. Now after a number of months of careful surveillance and comparison, I have had slow but consistent progress. My cancer has finally outsmarted my drug. Without getting into too many technical details here, ALK+ patients have a number of places where we can develop resistance to our medications. I promise, that I will explain this phenomena in a later post, but suffice it to say, I needed to make a decision.

There has been a great deal of progress made in the TKIs ALK+ patients can take. They have developed second and even third generation drugs that address some of the “problems” with the first generation drugs have. Mainly, crossing the blood-brain barrier and addressing the variety or spots on the protein where we experience drug resistance. So with careful consideration and consultation with my oncologist, I have decided to enrol in a phase I/II trial at Princess Margaret. It is another reason I wanted to go to ASCO, so I could learn what the latest and greatest treatment options are for patients like myself. More on that soon!!

This week, I have had a battery of diagnostic tests, it began with a biopsy, so we could see exactly what is going on in my tumors. Although this wasn’t 100% necessary, the tissue on file so to speak is 7 years old and may not represent an accurate picture of what is going on. So for me, it was an easy decision to make and now we have a fresh sample. After that, I had an MRI of my brain, a new experience for me. It wasn’t a wholly unpleasant experience, but man is it noisy!! Clanks and bonks and at some point I felt like I was in an early 90’s Nintendo game.

Today I had my port inserted, something I wish I had done years ago! After 6 months of infusions and 5 years on a trial protocol that required frequent CTs with IV contrast, my veins aren’t what they used to be and I was tired of the anxiety of whether or not the technicians could get a vein or not. Usually it was not and I’d end up looking like a heroin addict, bruised and scabby from multiple pokes. So in it went. As I write this, I am still doped up, so I hope this all makes sense! Tomorrow I go for a bone scan and Monday I go for my screening exam and get to use my handy dandy new port for the first time. In a warped way, I am looking forward to Monday so that I can find out the results of both my latest CT and biopsy. I will also get randomized and get to start.

After being NED (no evidence of disease) for so long, it’s a bit of a mind f*ck having to go through all of this again. I wonder what my reaction to the new meds will be? What will my side effects be? One of the new and more common side effects of this drug is hypercholesterolemia, which kind of sucks, but is a small price to pay. If I do have this, I’m sure it will be controlled with more meds. What I’m really hoping is that my edema will go away! With my luck though, it probably won’t, but fingers crossed!

So it is a brave new world I’m entering and I am hopeful and excited for what the future holds. The last 5 years have been unexpectedly eventful and productive. It is strange looking back on all that I have done and accomplished, given I never thought I’d survive 5 years. Now I am looking forward to the next 5 and the 5 after that. My painkillers are kicking in so before I get completely incoherent and nonsensical, I will end here. Thanks for reading and keep your peepers peeled for my ASCO update and future posts.