Intentional Magic (Fog Cancer)

Intentional magic describes the alchemy that happens when you bring together a group of random people (who happen to be between 18-40) that share a common experience. That the common experience is living through or with cancer. You’d never know that was it, at least by looking at us. Young adults with cancer making lemonade from our lemons. Cancer is different for young adults.

When you are a young adult that has been diagnosed with cancer, it changes your life profoundly, in ways you don’t even know yet, and won’t know how far the ripples reach until you are looking over the wreckage of your life. It changes everything. It changes who you are. It changes who you will become. Nothing is the same as it was and nothing will be what you thought or planned for. Now add in that most of the patients in the waiting room are your parents age or older (yes I had medical staff talk to my mother instead of me and have had to correct them). That the majority of funding for support, care and treatment is focused on 45+ or 18 and under. That you will likely never get insurance, may never have children or will suffer from reproductive difficulties, are at risk for secondary cancers, and feel isolated and alone in an experience that few will share at lease at this age.

Now put these people all together and its magic.

As a young adult with cancer and a rare one at that, I can attest to the feelings of isolation and loneliness, confusion, frustration, grief, anger and sadness at losing the trajectory I had planned for my life. I have mourned my fertility and financial security. I have feared for my life, and sometimes still do. I know scanxiety, and loss. So much loss, my own and of others. Too many to count. It physically hurts to count, the beautiful vibrant lives this community has lost. I know, and so do those at Young Adult Cancer Canada. That’s why they are wizards. They create this intentional magic every year and every year its a homecoming for me. Every year we gather as a group to learn, laugh, cry, dance, and remember.

Its magic!

It has been about a week since I came home from my trip to Newfoundland for YACC’s Fog Cancer conference and I have say it has been a challenge getting back into the swing of things. I normally expect to experience withdrawal, but this year it seems even harder. I don’t know why, maybe its because I just turned 39 and I fear my time in this incredible community is winding down, or maybe I over extended myself, or maybe I fear that one day it will be me being remembered up on Signal Hill. Whatever way, life hasn’t been as vibrant and comfortable as it was a week ago. I feel a little more alone, a little more isolated, a little more mired in my own crap. I miss the cocoon of just getting it.

AM

 

Mother’s Day and Coming Full Circle

Screen Shot 2017-05-14 at 9.58.24 PMIt’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 PMFor 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 PMIt 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 PMsystem, 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 PMI 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 PMlove 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.

AM

 

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

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-pmOnce 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 “nth” 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-pmnormal 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-pmHaving 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-pmI 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-pmSo 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.

AMscreen-shot-2017-01-30-at-10-05-27-pm