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.

 

 

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?