Let’s Talk Again Bell

Screen Shot 2018-01-31 at 2.19.03 AMWhen I started this Blog, it was really intended to be an outlet to express my life and with it was like living with a terminal illness, lumps and all. It is still that, but it has turned into so much more. Little did I know that a year ago on Bell Let’s Talk Day, a post I wrote the previous year talking about what it was like coming off of antidepressants would resonate so deeply. Deeply enough that it was picked up by WordPress’ Discovery team (a very awesome experience). I don’t know if this year’s post will be as profound or powerful, but I hope it touches someone out there and let’s them know they aren’t alone, and it’s ok to ask for help.

Screen Shot 2018-01-31 at 2.21.13 AMThis year has been hands down the hardest year for me mental health wise. I have felt things that don’t seem like me. I have always been cheerful and tenacious, but since changing cancer medications, I have felt anything but. I wish I could just switch meds, but they ARE the thing that keeps me NED and cancer free(ish), so I can’t just stop, or change, I have to deal.

But it has been scary!

This year I have gone to some very dark places, had thoughts I never thought I’d have. I have to remind myself, that I am not these thoughts, and that tomorrow is a new day. Initially, these thoughts would casually pass through my consciousness very briefly, to float away. Then they would happen as I looked at my life saving medication and wondered why I take them? I mean what’s the point? I’m so tired of all this. Gulp. Screen Shot 2018-01-31 at 2.21.39 AMSwallow, down the meds go. The thoughts soon float away. I then found myself on occasions, especially when I was feeling particularly down or feeling sorry for myself questioning whether or not everyone would be better off without me? On very rare occasions I actually uttered these horrible thoughts, “I wish I were dead.” There it is. Dark. I am not my thoughts!

It took me a few times experiencing this downward spiral to realize that something was really wrong. I was in a crisis that I hid from everyone, even myself. Upon this revelation, I immediately called my psychiatrist. Even with counseling and antidepressants, the depression and darkness seeped through. It wasn’t until I read another blog responding to Chris Cornell’s suicide that I really even realized this wasn’t me and that my brain as the author put it, was sick. It took an increased dose of my antidepressants and more Screen Shot 2018-01-31 at 2.26.02 AMfrequent counseling visits to vastly diminish the dark. I still feel down, but now I try to remember that tomorrow is a fresh start, I allow myself to feel whatever it is I need to feel, and then try to move on. I never give it a postal code. I won’t live there. I have too much to live for. Too much work to do. I love life too much, and I certainly didn’t go through all this to just throw-in the towel or bury my head in the sand.

For those who live in Canada, we have a wonderful initiative, sponsored by Bell Canada. It happens every year around this time and it raises both funds and awareness for mental health in Canada. Mental illness effects 1 in 3 Canadians, and yet it is still largely stigmatized. Bell Let’s Talk Day removes the stigma by allowing everyday Canadians to reach out and stand up, and is working to breakdown barriers faced by those who suffer from a mental illness. Screen Shot 2018-01-31 at 2.29.59 AMYou can help raise awareness and funds by simply sharing #BellLet’sTalk. By doing so, Bell will donate 5 cents every time it is Tweeted, texted, mentioned online, or when you use the bell network, so call, Tweet, text your hearts out for mental health.

Be Well XO

If you or anyone you know is in crisis, please call 911 or

Distress Lines

Operated by various agencies.  When in need of someone to talk to. Open 24 hours a day (unless otherwise indicated).

Toronto Distress Centres (416) 408-4357 or 408-HELP

Gerstein Centre 416-929-5200

Telecare (Mandarin & Cantonese), 416-920-0497

Contact Centre Telecare Peel 905-459-7777, Languages: English, Punjabi, Hindi, Urdu, Spanish, Portuguese

Assaulted Women’s Helpline 416-863-0511, Toll-free: 1-866-863-0511

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Warm Line, Progress Place 416-960-9276 or 416-960-WARM, every day from 8pm to 12 midnight

Kids Help Phone at 1 800 668-6868

Distress Centre Peel 905-278-7208

Durham Crisis Line 905-666-0483

Oakville Distress Centre – 905-849-4541

Click here for a comprehensive list of International resources

 

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

 

Week 6…Kintsugi – Recognizing the Beauty in Broken Things

Last week was hard!screen-shot-2017-03-04-at-10-29-19-pm

I am still sweeping up pieces of myself and putting them back together.

I have been broken before, so I know I’ll be ok.

Stronger.

screen-shot-2017-03-04-at-4-39-17-pmKintsugi is the Japanese art of fixing broken pottery, and its philosophy is rather beautiful. It recognises the beauty and value in broken things (more specifically pottery) and speaks to the breakage and repair of objects becoming the history of something, rather than the disuse of it. Potters often repair objects with resins mixed with gold or silver, making no attempts to hide cracks, but to highlight them and make pieces more beautiful and interesting. Here we tend to throw them out. I prefer the Japanese way.

A few years ago at a conference workshop on journalling we were asked to quickly write a response to the idea of Kintsugi. I wrote something and really never shared it, but in light of recent challenges and losses, I am using it to find strength again. I share it with you, its my story in a nutshell.

The fallout is far worse than the sickness. Once treatment is finished, the shell-shocked ruin of a person emerges from the fog. Every emotion and sense of fear comes pouring forth from me.

The problem was I couldn’t share these thoughts and emotions because if people really knew how wrecked I was, how terrified I was, they too may begin to crumble.

I wanted desperately to put back the pieces of my ruined life, to mend them and be the person I had been. The trouble was that person was gone.

I was paralyzed by fear. Terrified that once I managed to fix my life and myself, it would all crumble  to dust and there I’d be again, cancerous.

Somehow I tried my old life back on for size, but it didn’t fit. Like a shoe that was two sizes too small, it was uncomfortable and gave me blisters, but I put my brave face on and carried on. I had “successfully” taped my bowl back together.

Even though it leaked and looked like something Homer Simpson might make, it was together. Then it fell and shattered again.

More pieces strewn about, more pieces to pick up. How would I survive? Recurrence is a bitch.

Faced with few tangible options I decided to forgo trying to fix myself again. Instead I chose to live and love and be happy. I knew the bowl could never look the same, it had been too “damaged” and broken.

I chose to accept it, scars and all. I gave up the mask of bravery and allowed myself to be raw and vulnerable. To share that vulnerability with those around me. In doing so, I slowly turned that ugly shell of a person into something stronger and far more beautiful.

Each crack like a work of art, a work of love, a work of life.

MBSR like Kintsugi is about accepting things as they are.

Week Six of MBSR focuses on two ideas that are designed to help us strengthen our minds to be able to do this: Thoughts are not Facts andMindful Communication

screen-shot-2017-03-04-at-10-35-02-pmSo often how we think and communicate can be a point of stress. By becoming aware over and over again how (in meditation) our thoughts can effect us, we can recognize them, let them go and return our focus to our breath. With time and practice we can gain some distance and perspective on our thoughts allowing us to see that there may be other ways to look at or think about situations, breaking us free from old patterns. Thoughts are only mental events, they are not facts. We certainly are nt our thoughts.

Communication patterns can also be problematic or a source of tension for many of us. One of the reasons communication can break down is that many of us focus on or project the hope that someone else will give us what we want – attention, validation, understanding or approval. What this does, is put pressure on the other person, and sometimes backs them into a corner. Often when we feel pressured, we shut down rather than open up. When that screen-shot-2017-03-04-at-10-35-45-pmhappens during a conversation, often communication breaks down because a person can feel threatened, resentful, and not heard. In MBSR we are learning to focus in on ourself and our behaviour rather than those of others. We tune into our thoughts, emotions and physical sensations so that we can read them. By being aware  of these things, we gain a better sense of perspective and balance and can then focus on communicating our need rather than projecting them.

These ideas can be hard to learn and sometimes even more challenging to practice, because the ask us to really examine ourselves and ask us to be accountable to ourselves. However, once you do learn these lessons, you will find your perspective changing. You may even be able to let go.

Be well,

AM

 

Activities:screen-shot-2017-03-04-at-10-34-07-pm

 

Meditations:

Mountain Meditation

Mindfulness of Breath (Track 4)

Bells at 5 Minutes, 10 Minutes, 15 Minutes, 20 Minutes, and 30 Minutes (Track 13)

3 -Minute Breathing Space (Responsive) Track 9

Home Work

 

*Ways You Can See Your Thoughts Differently – Here are a few things you can do with your thoughts, either in meditation or in your daily life.screen-shot-2017-03-04-at-10-55-26-pm

  • Just watch them come in and leave, like a waves, without feeling like you have to follow them.
  • See if it’s possible to notice any feelings that give rise to the thoughts. Sometimes the context can be a link in a chain of events.
  • Think of thoughts as mental events rather than facts.
  • Write your thoughts down on paper. This lets you see them in a way that is less emotional and overwhelming. It can also give you time to pause and give you a moment to respond differently.

Previous weeks 1, 2, 3, 4, 5.