#Acceptance – These Are My Scars

Nine Years, Nine Lives

April 16, 2018April 17, 2018 These are My Scars1 Comment

Today is a pretty remarkable day in my life. The day my life was changed, utterly and completely – nine years ago. When I think about that, I am brought to tears. After all I wasn’t supposed to be here. If it weren’t for luck and scientific breakthrough, I wouldn’t be. There are times I wonder why I am, still here that is. If it were any other kind of anniversary, I would be celebrating with a party or a cake. Because it’s my cancerversary, my day is spent reflecting on my blessings and thinking of all the dear friends I have lost along the way.

In years past, I have been so busy that the day has almost gone by without notice, can you imagine? A day not thinking about cancer, a normal day. I don’t have many of those. 2015-08-26 21.49.54 3,285 not normal days, just off, abnormal like the cancer. Some days I feel every second. On other days, time flies.

I live a condensed life, condensed experience, condensed joy.

Joy.

This year is kind of a monumental year. I turn 40 in just more than a month. 40! Middle aged (when did that happen :o)! Believe me, I didn’t think I’d ever see my 35th, let alone my 40th. When I was diagnosed nine years ago, I didn’t think I’d get to do a lot of things!

I didn’t think I’d ever be able to buy a car or a house. I didn’t think I’d get to travel. I didn’t think I’d get the chance to fall in love. I didn’t think I’d ever advocate for change. What did I know!? I had no idea what potential my life had. I had no idea of what I could achieve. I had no idea what life truly held. I had no idea what it meant to live. I mean really live.

It shouldn’t take critical or terminal illness to teach us that lesson. 2016-07-07 18.54.45-1 Why can’t we all live genuinely, authentically, passionately, no time for B.S. kind of lives.

Time.

When you realize that time is really the precious commodity that everyone is after, you begin to value it over everything else. Things are just thing and are transient. Money can be made, of course it can buy comfort, but it’s just a thing. Time on the other hand provides us with opportunity. Opportunity to spend it on doing what we love. Opportunity to spend it wisely. I say that, because for us, it’s limited.

Our clocks start ticking they day we are born. So we can chase money and fancy things, and spend all that time working and running in circles. Or. We can open our eyes and see how beautiful the sunrise is, especially when you are with someone you love. How magnificent it is to experience the cultures of the world. How wonderful it is to be loved.

Love.

I wouldn’t be here without Love. The love (and kindness) of my medical team. Love from my family and friends. The love of my dogs. The love of my life. Thank you all! I couldn’t do it alone. I know together, we move forward.

To another nine years,

Happy Father’s Day

June 19, 2017 These are My Scars9 Comments

I’m having a tough day today. I slept most of it away, because I could feel the guilt and sadness building last night. For the last few years, it had been a sad day, one filled with feelings of loss and now feelings of guilt. Screen Shot 2017-06-18 at 9.33.18 PM

For much of my life, I didn’t have a very close relationship with my father. It was often one of conflict and avoidance. I remember as a child I would avoid him, tip toeing by his sleeping frame and slipping by the couch to sit by the TV, sneaking the converter and changing the channel hoping the disruption wouldn’t wake his snores. In my teenage years I was far more rebellious. Alcoholism is a poison and its venom affects every member of a family for a very long time.

By the end of high school, our relationship was almost toxic. If it hadn’t been for my boyfriend at the time, I likely wouldn’t have had any empathy for my father at all. In my last year of high school and just before graduating an incident happened. It was the straw that broke my mother’s back. She gave him an ultimatum. You stop drinking and get help or you get out! He stopped. Cold turkey.

Screen Shot 2017-06-18 at 9.51.45 PM For a very short while, I got to see the man behind the booze. He was the kind, funny, gregarious man my mother described, the man she married so long ago, the man I barely knew. Later that year I went off to University in London and moved out. When I’d call, my mother would say your father misses you. When they’d visit, he would kiss my cheek and slip me some money and whisper “don’t tell your mother” while wiping his eyes.

On my first day home of spring break, I entered an empty house. At that time, we had no cell phones, so I called a neighbour who told me that my parents went to the hospital. I Screen Shot 2017-06-18 at 10.00.09 PM immediately called my brother and we went to see what was going on. My father had been suffering from a “cold” for a while and finally had broken down and gone to see the GP. The doctor ordered x-rays, one look told him something was very wrong. He told my parents to go emergency immediately, they did. A week later we were told he has terminal mesothelioma. The months that followed were fraught with joy, sadness and every emotion in between. I decided it would be best to come home and be with my family, a decision that I am so glad I made. We often wonder what could have been instead of what is, I have too. I regret nothing,

His last days were excruciating, he was in so much pain despite the pain pump and morphine, every breath was agony. It was during this time he told me he loved me. It was the first time I heard it from his lips. Shortly after that he was sedated so he could be comfortable. No human should suffer like that. In the end he died peacefully with all of Screen Shot 2017-06-18 at 10.06.09 PM us by his side.

Since that time, I have seen my brother become a father. A man who is devoted to his family. A man would bleed and stand in front of a bullet for his daughters. I know so much of how he is was shaped by and sometimes inspire of how we grew up. He is a great father, one who I think if our dad would have been proud of if given the chance.

And now the guilt.

I can’t help thinking that Patrick would have made the best dad. When I see him Screen Shot 2017-06-18 at 9.27.30 PM interacting with his nieces and nephews I feel like I have robbed him of the gift of being someone’s father. I have told him this and he always reassures me that he is happy and fulfilled with mentoring the kids he works with and that he has his nieces and nephews. Maybe I’m stubborn and can’t let go myself, but I think he would have been so great, and part of me just feels terrible that I can’t give him that one thing. So today is a tough one.

Now that I have gotten that off my chest, I want to wish all the father’s who are, were, and who want to be out there a day where you are appreciated and loved.

Screen Shot 2017-06-18 at 9.34.05 PM To my new father, the dad I married into, I want to say thank you and I love you. Thank you for your love and acceptance, and I love you, for the dad that you are, and for the man you shaped with your love and patience.

Mother’s Day and Coming Full Circle

May 15, 2017May 15, 2017 These are My Scars2 Comments

Screen Shot 2017-05-14 at 9.58.24 PM It’s Mother’s Day today and I have to admit that it can be a bit of a challenging day for me. As progressive as I am and know that one is not defined solely on one aspect of their life, not being a mother is well a mother. After all it’s a day explicitly for celebrating our mother’s, but what is a mother? Screen Shot 2017-05-14 at 9.04.55 PM

Babies are popping up everywhere, and kids are extra cute at least it seems so especially today. There is nothing like other people’s joy serving as painful reminder of the things you cannot have. Please don’t get me wrong, I am overjoyed for their happiness and the blessing of that new life, but it’s just that it’s an in your face reminder that I will never be a “mother” and some days it just feels like cancer just robs you of everything.

Screen Shot 2017-05-14 at 9.02.09 PM For a while I thought that this sense of loss was more about feeling what it is like to be pregnant than actually being a mother, but I now know that it is the whole cycle of life that I am missing out on.

Early on in my diagnosis, I had the wherewithal to ask about fertility preservation. I was referred to an onco-fertility specialist literally days before my first treatment. I remember vividly sitting in the Dr.’s office, thinking I had everything under control until “harvesting, embryos, and sperm donors” were mentioned. I actually started having a panic attack. My head swam with questions, “What if I meet someone and they don’t want my sperm donor embryos,” “What kind of qualities do I look for in a donor”, “What do I do with my embryos if I don’t use them?” “I can’t donate them, pieces of me will be out there, but I don’t know if I can destroy them,” the thoughts were consuming.

Breathe, just breathe I thought.

My saving grace was my oncologist deciding that there just wasn’t time to delay three weeks to harvest my eggs. So they shut my reproductive system down while I did chemo. It seems strange to have such a monumental decision made for me, but it was a relief that I didn’t have to decide, I realize now, I wasn’t ready and as much as I wanted to consider the options, the truth was, there wasn’t time and I didn’t have anyone to turn to for unbiased advice.

After treatment was finished, I saw the fertility specialist again to revisit whether I wanted to harvest and preserve my eggs. At that time, I decided that I would harvest eggs, but I didn’t have the finances to proceed and although I would be getting the cancer discount of 50% off the regular price, I waited.

Once again, the decision was made for me, my cancer was back, this time it had spread and I realized that I might not get out of this alive. Parenthood would have to be something that was sacrificed in order to save my own life. Even though it’s now eight years later and I am stable and married, my choices are still limited to acceptance of my infertility, except now I am actively trying to prevent pregnancy.

Screen Shot 2017-05-14 at 9.18.26 PM It is amazing how things can come full circle. Having the option of being a mother taken away from me made me want it so much more, but having been through treatment and knowing I will live the rest of my life with cancer and the possibility of recurrence or progression at anytime I am steadfast in deciding not to have a child. I mean, how can I possibly put a child through losing their mother, or risk passing on my faulty genes or risk my own life just trying? Had I never encountered cancer, I wouldn’t have a problem trying to get pregnant at 39, but that is not the case.

Even if I could get pregnant, my ovaries have been exposed to so much radiation from scans and treatment my eggs would be fried, they have been exposed to systemic chemotherapy, and they are 39 years old, the odds of having a healthy pregnancy is not be in my favour. As it stands, the treatment I’m on counter-indicates pregnancy. The drug inhibits a protein (ironically ALK) that is used during fetal development and the effects on a growing fetus are unknown but likely detrimental. I could stop treatment, but that would mean I’d have to stop my meds for as long as it takes to clear out of my Screen Shot 2017-05-14 at 8.58.18 PM system, plus the time it would take to get pregnant and finally another nine months until delivery. I might be lucky enough have the cancer not grow or grow slowly enough to make it to delivery and restart treatment, but then there are no guarantees that I’d respond to treatment again. It would be playing Russian roulette.

Maybe it is a selfish decision, maybe it is for the best, but there is nothing like holding and smelling a new baby to make you doubt your decisions. I don’t know what it is about the new baby smell that triggers every cell in my biology to want a baby, but it does and it’s hard to resist that siren’s call. For a long time, I couldn’t bring myself to attend baby showers or even hold a newborn because it was so upsetting, but I have gotten better. Knowing something in your brain doesn’t make it any easier to knowing it in your heart. I don’t regret any of my decisions and it has taken a long time to get to a place of acceptance. I still have my bad days, today is one of them.

Screen Shot 2017-05-14 at 10.07.25 PM I am very lucky though, I am healthy and happy and have a wonderful little family (Me, my Patrick and all the fur babies, Lacey, Finn, Mischa and Borat), and have been blessed with a most incredible mother who raised and cared for me (still does) in good times and in bad and taught me how to be a strong woman. I have a wonderful mother-in-law who is kind and thoughtful and who so openly embraced me as a daughter and know through her son what an amazing mom she is. I have so many women in my life who inspire me to be great and to do great thing because of their example of sacrifice and grace. So I don’t have my own biological children and never will, but I have known the kind of Screen Shot 2017-05-14 at 8.56.55 PM love it takes to be a mother.

To all the would be moms and mothers who have lost children, adoptive moms, and surrogate moms you deserve to be celebrated today too. So to all the mother’s out there in whatever way you are defined, Happy Mother’s day to you.

How to Love Your Body…When its Trying to Kill You?!

February 1, 2017 These are My Scars5 Comments

To say I have issues with my body is an understatement. It did, after all, try to kill me. Three times now, and possibly again in the near future.

So how does one come to terms with their body after something like cancer?

Work in progress comes to mind.

screen-shot-2017-01-30-at-9-54-55-pm Once upon a time, I took my body for granted. It was strong and flexible and I tipped the scales at about 95 lbs. soaking wet. Fast forward a few years and a tussle with lung cancer and my once slim frame is much more Rubenesque.

It has taken a while to realize how ludicrous it is to worry about something so trivial and superficial as putting on a few pounds, especially when I stop and think about what my body has actually been through in the last seven years. I mean, what are a few pounds when your body has been poisoned and radiated to the “n^th” degree, not to mention cut open then poisoned some more.

My vain self wishes for my old body back, but my rational self realizes that this is where my body is and needs to be to be healthy and the two factions battle. Most days my rational self wins, but there are days when I go to my closet and nothing fits and I want to pull out my hair! screen-shot-2017-01-30-at-9-52-09-pm

The bigger issue for me is reclaiming my body and getting used to its new limitations. I hate to admit I have limits, but I do. On a good day, I feel like I’m a vibrant young woman, but most days, I feel old. I am constantly tired, my joints are stiff, and my legs and feet are swollen. Despite this, I still try to be as screen-shot-2017-01-30-at-10-03-21-pm normal as possible. This “normal” is new for me because I once had boundless energy and pushed through fatigue; now its all I can do to get to a couch before I pass out. I have often tried to explain what my fatigue is like, but words fail me. The best way I can describe what is happening is a complete and total shut down that sneaks up on me like a shadow then totally consumes me and I can’t stop it. The problem is even if I sleep, I still wake up exhausted. This makes working and socializing rather challenging.

screen-shot-2017-01-30-at-9-58-27-pm Having lung cancer really messes up your lung capacity. Even though pulmonary function tests say I am in the normal range, I know I’m not. I can’t run to save my life. Climbing up hills is out of the question, even just a slight incline has me huffing and puffing like the big bad wolf, and stairs, lets not even talk about them.

An added bonus to all this wonderfulness is the edema or swelling, acute neuropathy and arthritis I experience. None of these side effects are predictable or effectively treatable. The neuropathy, which for a long time was a mystery, turns out to be a side effect of the chemo I received. When it happens, it makes anything that touches my skin incredibly painful. Pair that up with the swelling and arthritis and I am one sexy beast.

screen-shot-2017-01-30-at-10-29-28-pm I used to have great legs, now it seems that I have two stumps attached at the hips. I began to notice that my knees and ankles would get stiff, and then I realized that my legs were sometimes swollen, as time went on, they were always swollen to the point that my range of motion became limited. To help this problem I began taking a prescribed diuretic that worked for a while but became less effective as time ticked on. Topping it off was my bone scans revealing what I long suspected, that I have arthritis in most of the joints in my ankles, feet and legs and in my shoulders, hands and wrists. Hello creaky old lady bones.

You might think that with all these complaints, I am not thankful or grateful for the treatments I have received, but it really is quite the opposite. These obstacles are just speed bumps. I gladly take these inconveniences over being sick or dying any day.

screen-shot-2017-01-30-at-10-36-05-pm So at the end of January when gyms everywhere are beginning to empty in the annual, New Year’s resolution revolution (Why is it that we are compelled to make resolutions? Does anyone really keep them?) I will be grateful and know that I am good enough.

I am slowly learning not to beat myself up when I get tired, when I can’t do something I used to find easy, or when I’m gasping for air. I’m learning to accept my less lean self and love every inch of it, because it has been though the ringer and remains true. It’s a steep learning curve and there are always setbacks. So the going is slow, but I will take this body for better or worse and learn to be kind to it.

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