Links are live

Another bout of insomnia had provided me with the impetus to get a links page going. I have put together a short list of the resources I have used. All the sites are excellent with the exception of the impossible to navigate Health Canada page. Please check it out and pass it along to any one who may need it. All sites used there are vetted and accurate. Please report any dead links.

AM

These are my Scars

I was born naked 
Perfect skin
Ten fingers ten toes
One mouth one nose
To breathe life into my lungs
I cry out

I grow 
I learn
I stumble 
I earn
I fall
I stand tall

Then you came
Death and destruction 
Fear and shame
Monster of many names
I cry out

Needles needles needles
Poison 
Cut open
Born naked 
Imperfect
I cry out 

Your footsteps follow
Darkness and doubt
Sadness and anger
Fear of your shadow upon me

I crawl 
I grope 
I struggle 
I fall 
I cry out
I stand tall

Born naked
These are my scars
I wear them proudly
I stand tall
I cry out

Happy National Poetry Day

AM

Cover Girls

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…

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Why do I feel so bad for feeling bad?!

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

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.