Happy Father’s Day

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 PMFor 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 PMimmediately 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 PMus 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 PMinteracting 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 PMTo 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.

AM

 

Melancholy and the Infinite Sadness…Week 5

I’m melancholy today.screen-shot-2017-02-27-at-2-25-02-pm

It’s one of those days where I wish I could unzip my skin and I could become someone else. Just for today. I can’t so I just want to hide. Crawl under my covers, or be like a cat and shelter under the bed.

screen-shot-2017-02-27-at-2-33-53-pmI want to scream, but if I open my mouth to talk, I feel so fragile right now, I’m afraid I’ll break into pieces, and I just don’t have the strength today to put myself back together. So I’m writing.

I’m trying really hard to drag myself out of the swamp of feelings I have. screen-shot-2017-02-27-at-2-38-11-pmSorrow for children who have lost their mothers, husbands who have lost their wives, families who will have an empty seat at their tables. I think about how one day that will be my people, who will feel this for me. It is gutting.

Today the reflection in the mirror is hard to look at. It shows reality. A reality where 4 pills a day keep me alive. A reality where I wonder why I got so lucky, when others stronger, younger, better than me aren’t. A reality where the knife’s edge I dance on is clear and present. A reality where the clock is ticking and time is running out. It’s a hard reality.

I know the only way to get through today is one foot in front of the other.

screen-shot-2017-02-27-at-2-40-37-pmTomorrow I will try to let go.

This is a really crappy way of segueing into the MBSR Week 5, and I swear I’m not making up the theme: Allowing and Letting Be. (Irony?!)

I suppose this is why MBSR can be so helpful. It teaches us and sometimes deliberately forces us to examine and really be present in aspects of our lives that are hard. It also teaches us that it’s okay if we experience hardships, anxiety, loss, or stress. These things are part of life. What it is designed to do is help and encourage us to look at these things with non-judgment and kindness towards ourselves and others.

This is the lesson I find hardest. Guilt is a nasty beast and today I have a bad case of survivor’s guilt. I’m having a hard time with not judging and treating myself with kindness. It’s easier to wallow if I beat myself up or tell myself I shouldn’t allow myself to feel badly. It’s easier to mourn them than it is to mourn me.

Tomorrow I’ll do better. For them. For me.

AM

 

MBSR Weeks 1, 2, 3, and 4.

 

Meditations

Working with Difficulty (Track 12)

3-Minute Breathing Space (Regular – Track 8)

3-Minure Breathing Space (Responsive – Track 9)

Bells only at 5, 10, 15, 20, 25, and 30 min

 

Homework

  • On days 1, 3, 5 practice Working with Difficulty track 12.
  • On days 2, 4, 6 practice sitting in silence for 20 to 30 min using Bells only.
  • Everyday practice the 3-minute breathing space track 8
  • As an unofficial practice, use 3- minute breathing space responsive track 9 for anytime you notice unpleasant feelings (tension, stress, anxiety).

Just Breathe…for Elizabeth

One of the biggest pitfalls of surviving this horrible disease for 8 years is that you lose a lot of friends along the way. I’ve lost too many to count. Every single one of those people is a scar on my heart.screen-shot-2017-02-26-at-5-35-29-pm

After I was diagnosed with cancer, I longed for connection, someone somewhere that could tell me I wasn’t alone. I found my tribe online. Actually I found a few tribes because my experience like many out there didn’t fit a neatly tied up definition of the cancer experience. I wasn’t just a young adult, or a lung cancer patient, but a young adult with incurable ALK+ lung cancer. So eventually I found what I was looking for. I cannot begin to tell you how powerful it is to connect with people who have walked in your shoes.

In many instances I have never met the people I talk to, we tweet, chat, post to web boards, blog, etc. but in those communications we have forged a bond of strength, empathy, support and friendship. In all of my interactions with others like me, whether in person or online, I find that these patients have an uncanny ability to cut through the niceties and small talk and really get down to the humanity of this disease. They know the fear, anxiety, sense of loss, empathy and mutual respect for another’s journey, because they too have been through it. It is because of that shared experience that we connect on such a profound level. I see myself reflected in them and they see themselves reflected in me. It is a connection that many of us don’t have with even our loved ones, because as much as they love and support us, they just simply don’t know what it is like to live with cancer.

Being a part of these communities is such a privilege. So often we share things with each other that we can’t share with even our closest friends and loved ones. It is truly a unique and beautiful thing to have such friends, but these relationships come with a price. It is the double-edged sword of sharing such deep connections – the grief and sense of loss when one of our friends passes away.

Someone once asked me how I can be so sad for someone I’ve never met? The answer is simple. I am mourning for them, their families and friends. I am mourning the loss of potential happiness and love and life that could have been. I am also mourning for me because at some point it will be me. When one of our friends dies, we are reminded very explicitly that we too are vulnerable. For a brief time, the light and fight and hope we have nurtured is extinguished and we are broken. The loss of “virtual” friends results in a very real sense of loss and sadness. We should treat these feelings the same way we would if we lost a “real” friend. Feel the sadness, talk about your feelings, honour your friend’s memory, and if needed seek support, within your communities and outside of them.

Yesterday, the world lost a tremendous  light.

screen-shot-2017-02-26-at-5-25-12-pmShe was 27, a young mother who beamed when talking about her 18 month old miracle boy. She was an incredible advocate speaking out for the lung cancer community and raising awareness and funds for support programs and research. She like me was a teacher and a young face of lung cancer.

Elizabeth also known as From Lizzie’s Lungs was diagnosed just shy of two years ago, she was celebrating being a newly wed. She and her husband were expecing a new arrival when a nagging health concern turned their lives upside down. Lung cancer. A rollercoaster ride no one let alone a 26 year old should face. She faced every challege with stride and with grace. She was a force!

Today I mourn Elizabeth. I mourn for her beatiful son, I mourn for her loving and supportive husband, I mourn for her parents and family who loved her, I mourn for her friends, and I mourn for us.

Fly with the angels Elizabeth. Just Breate.screen-shot-2017-02-26-at-5-27-34-pm

AM

 

 

 

 

 

 

Amanda

Words escape me and I can’t quite express what I’m feeling in the way I want to. Week 5 of our MBSR should be up, but I can’t bring myself to write the post yet. You see, I just found out today that a friend and fierce cancer warrior passed away last night. So if you can bare with me, that post will go up in a few days time.

Losing friends hurts.

I met Amanda about six years ago at a Young Adult Cancer Canada (YACC) conference. It was shortly after I had found out that I was terminal/incurable. I had come to conference for strength in facing what would likely be my last year. I had no idea what would transpire at conference. Previous meetings were fun and offered helpful tips dealing with some of the issues faced by young adults (YA’s) like fertility, loss of identity, isolation, relationships, disintrajectorization*, and so many more. Most importantly, they offered a chance to be with others that just got it.

Most at conference at that time were dealing with their first diagnosis, or were recently out of treatment, there weren’t too many of us that were lifers, so I was surprised to hear about an informal meeting for metastatic participants. I jumped at the chance to attend! That’s where I met Amanda. She like me was one of the 10 who attended that meeting. It was a cathartic experience. It was raw and painful, we cried, swore and shared our most intimate fears, it was beautiful.

It always amazes me how open we can be with others, baring secrets that we don’t share with our most trusted friends and loved ones. One may wonder why that is? Honestly in my experience at that time, I didn’t want my loved ones to know how scared shitless I really was. I didn’t want to admit that I might die. I wanted to shelter and protect my family and loved ones from suffering, both mine and theirs. It was sense felt by many in that room, including Amanda.

In the months following that meeting, we lost three friends. Amanda was not one of them despite being riddled with cancer. It was everywhere, her bones, liver, lungs, and other major organs. She was a walking miracle.

Again we lost friends, but she endured.

We would go on to attend more conferences together. She attended some in a wheelchair and others rocking stilettos, but her spirit was always indomitable. She loved her daughter with ferocity and her whole heart, everyone knew that because she told us with pride. Her personality was big and bold, you always knew where you stood because she didn’t mince words and didn’t hold back. She lived her life with every fiber of her soul. She unknowlingly was my against all odds beacon of hope. screen-shot-2017-02-24-at-4-43-48-pm

Today my shores are a little dimmer.

AM

*Disintrajectorization was a word coined by Travis Gobeil in 2005 and is a term that describes what happens to your life when you get cancer as a YA. Your life is disintrajectorized off its current path and onto another totally different path.