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

 

When Worlds Collide

Screen Shot 2017-05-04 at 8.30.28 PMToday is May the 4th and for us Star Wars Fans out there it’s Star Wars Day and boy did I did feel at one with the Force. For a short time today I was truly happy because I was finally able to see my Oncologist and not one of her fellows (even though they are all lovely and very competent) because it’s just not the same. For months now, I have been struggling with being just good and not NED (No Evidence of Disease), it’s been quite an ordeal. This is in part because I have had access to the scan results  and the fellows (bless them) have been saying “it looks good, no change,” the reports of course say that the nodules in slide x remain unchanged, so of course I see remain and think “well there’s cancer there!”

It was a tough pill to swallow (literally pills) going from being a super responder on Xalcori (yes its a thing) to just being good. For an over-achiever, this is not ok, especially when Lorlatinib is supposed to be a better drug. Well today I found I wasn’t just good, I’m a super responder and I’m NED!!! Hooray!!! So all that worry and mental gymnastics for nothing. Now that I’m relieved for myself, I can channel my energy into outrage for my friends in the US.

Maybe you haven’t heard or don’t know that the Republicans and the House of Representatives voted to support a heinous bill to replace the Affordable Care Act (AKA Obamacare). They voted despite not knowing if it would save lives or harm people. If yoScreen Shot 2017-05-04 at 9.28.07 PMu are looking for impartial, you won’t find it here! Many and by many I mean millions of people will have to pay tens of thousands of dollars more to even get insurance or care based on their pool.If I lived there I would be in the two to tiers and would have to pay at least 150K a year and that doesn’t accept for the expensive pill I need to live. Even if I was at the top of my pay grade this is way more than I could afford, so without it I would die. Thats what my friends are facing. It sickens me! It also makes me so incredibly thankful that I was born in and live in Canada. Our system isn’t perfect, but you can bet your ass that if you’re in trouble you will be guaranteed care.

Screen Shot 2017-05-04 at 9.04.12 PM

I wanted so much for this post to be happy and for the most part it is. I wanted to just update everyone and summarize my weekend at the DC Hope Summit, but the more I think about is, the sicker I feel.

Screen Shot 2017-05-04 at 11.43.49 PM
Look at all those beautiful survivors!! Also that’s Katie hope dealer extraordinaire 🙂

Last weekend I was so incredibly priviledged to be able to attend LUNGevity’s Hope Summit in DC through a donor scholarship (and the very hard work of resident hope dealer Katie Brown and everyone at LUNGevity). It was an incredible experience! It’s not often that one is able to meet so many others like me. There were people from all stripes, young, old, survivor, supporter, newly diagnosed, those who have been around the block and everything in between. Before this, I couldn’t have even imagined having 340 other survivors and caregivers in one place. It was truly beautiful and tragic all a the same time. Beautiful because there were so many of us, tragic because there was so many of us. Its complicated.

I almost always need a few days to decompress and process my experiences because they really are massively emotional experiences, and I say that in the most positive way. There were so many ALKies like me, and ROS1ders, those with EGFR, Cmet and those without a driver mutation, regardless of who you were, there was someone there that knew and understood your experience.

It was just wonderful to see everyone talking and sharing, crying and laughing, taking hope from hearing someone else’s story and sharing their own, maybe empowering someone else. Many new advocates were born over the weekend and some old ones refuelled. Now, more than ever, they will be needed.

I have always marvelled at the close knittedness of the lung cancer community (so many of us knew each other online before ever meeting face to face) and how much sharing happens, how much progress is being made with so little. So little attention. So little funding, and yet research has happened, awareness is happening, action is being taken and people are living better and starting to live longer. But there is still a long road ahead. But we are just starting and bills like the AHCA is a massive setback to us and to all others who are vulnerable and live on the knife’s edge. So my thoughts are with all of you who hoped for the best, and are hearing the worst, resist my friends. Resist with every breath.Screen Shot 2017-05-04 at 9.22.20 PM

Be Well and May the 4th be with you.

AM

Indivisableguide.com

Surrogacy and the blues

Maybe it because my mood is like the weather today…fog clouds my mind and clouds fog my heart, while tears are on the verge of falling at any minute.

Screen Shot 2017-04-04 at 8.19.19 PM

Maybe it’s because I’m depressed…I’m switching my meds and on a clean out.

Maybe it just because I hate hearing people be flippant about something that is tragic and a privilege and someone like me and many others out there just can’t do.

I happened to be napping, and e-talk came on (usually I flip the channel) but I was half asleep until I heard the “news that Kim Kardashian is encountering fertility problems.” First, let me say I don’t know Kim or her health issues, and I normally would never judge anyone’s choices in whether or not they are or are not pursuing any or all health care options, but this bothered me. If her problems are real and not just fodder for a TV show, then I really feel badly for her, because I know what its like to have fertility issues and what its like to be told that you can’t or shouldn’t have a child.

Screen Shot 2017-04-04 at 8.31.40 PMIt feels like a part of you had been ripped from you. It feels like you have to bury the most natural instinct you have. It makes you question your identity. It brings you to tears at the sight of children. You tell your brain that its better to not have any, and suppress the wonder of what it might have been like to parent. It feels even worse, but I honestly don’t have the right words to describe the feeling. So if it’s real, I get it.

The problem I have is the “I’ll just get a surrogate” solution. Because it’s so easy.Screen Shot 2017-04-04 at 8.21.04 PM

Maybe for her it is. Well good for you!

For many of us, it’s not an option, at least a viable one. For one, it is incredibly difficult to find someone to do that for you. Think of the sacrifice! I mean they are going to carry a child for nine months and then just give it a way. It would take a very special human to do that for you.

Maybe you get really lucky and you can find a family member or even a complete stranger, the legalities of such a transaction are not so simple. So when someone just throws surrogacy out there as a solution or alternative to pregnancy for whatever reason, they either come from great privilege or great ignorance.

I know people who have had children through a surrogate, when it happens, it is a true gift and miracle in and of itself. These people have traversed the ups and downs and craziness of pregnancy to help families these families who otherwise could not have a child. They weren’t a quick fix that could be fixed with some money thrown at it. They were friends who knew how hard and how much these couples wanted a child. They knew these women couldn’t bear a child naturally because of previous cancer treatments, or those that were ongoing. They did it out of love. They were willing to sacrifice themselves, their own health, time and bond they had with that baby. Like I said, it takes a special person. Not everyone finds their angel.

Anyway I don’t want to ramble, but if you are like me, or if you are looking for help with fertility, I’ll post a few good links and call it a night.

AM

My Oncofertility.org – A patient education resource provided by the Oncofertility Consortium

Fertile Future – Fertile Future is a Canadian national non-profit organization that provides fertility preservation information and support services to cancer patients and oncology professionals.

LIVESTRONG – LIVESTRONG Fertility is dedicated to providing reproductive information, resources and financial support to survivors whose cancer and its treatment present risks to their fertility.

Living with intention…Week 8

Screen Shot 2017-03-22 at 9.52.50 AMHey folks we made it to week 8 in the meditation series and here we are at the end! It has been really wonderful to put this out there and to practice and re-fresh myself again, I truly hope it has helped you in some way.

Hopefully as a result of your dedicated learning and practice, you may have noticed some  changes in you since you began. If you haven’t, now might be a good time to ask yourself…have you noticed any changes since you began 8 weeks ago?

The changes may be different than you expected and they might not be monumental. They may include subtle shifts, like discovering that you don’t react as readily to stressful situations, maybe now you take a deep breath or two before you act or don’t act. Or maybe Screen Shot 2017-03-22 at 9.54.44 AMyou’ve discovered that you are sometimes able to find space in the day to take a few minutes to yourself, or that you are a little more resilient in difficult situations, or that you’re just a little kinder to yourself. No matter what they were, pat yourself on the back, you made it.

Now the challenge will be to continue on practicing. It doesn’t have to be intense like these 8 weeks have been, it’s up to you to find your own way. There will always be a million things pulling you in all directions and getting in the way, its up to you to remind yourself to be mindful and do things intentionally.

One of the greatest lessons I have learned throughout my 7+ years of living with cancer is, there is no control. It is an illusion. I can control the weather as easily as I can control the things happening in my own body. That is to say, I can’t!

What I can control, and what you can control is how we choose to react (or not react). How you choose to live with meaning and intention. We can let our lives go by with notions of shoulds and wounds, but by doing that we miss life.

So live.Screen Shot 2017-03-22 at 9.52.34 AM

AM

“When possible do just one thing at a time. Pay full attention to what you are doing. When the mind wanders, gently bring it back. Repeat step 3 several billion times. Investigate your distractions”
– Larry Rosenberg

 

Resources & Tips:Screen Shot 2017-03-22 at 9.43.45 AM

See previous weeks 1,2,3,4,5,6,7.

Tarabranch.com – Lots of goodness!

Dharmaseed.org – Pod Cast

Audio Dharma – Guided Meditations

Meditation Oasis – Podcast & Apps

Daily Mindfulness – Tips and suggestions

The Anger Process – AH FOWL

5-Step Pain Process

Soften Soothe Allow – Dealing w/ difficult situations

Tuning In – Tips on how to be a good listener.

Loving Kindness…Week 7

To say that this post is late is an understatement!!Screen Shot 2017-03-14 at 8.21.05 PM

When I get writer’s block, I get writer’s block, and that’s exactly what happened…that then add a dash of perfectionism and you have a recipe for disaster!

I don’t know why I can’t quite get a coherent piece of writing done around this week’s topic, which is Loving Kindness and how best to care for yourself. I have written and re-written this post over and over, but it never really seems “right”.

I know I am my own worst critic and hold myself to a ridiculous standard that I wouldn’t normally hold for others, and I’m working on it. For me, it’s easier to recognize someone else’s pain and suffering than my own, and often when I do, I feel terrible and beat myself Screen Shot 2017-03-14 at 8.24.33 PMup because, “There’s someone out there who’s worse off than I am, how dare I feel sorry for myself”. I have gotten better with that, but I am still hard on myself. This week’s practice is about evaluating and being mindful on how to be kind (not judging) towards yourself and how to best care for yourself in times of distress.

 

Some may say that this is selfish, but I’d ask you to read Five Myths to Self-Compassion, it is quite enlightening, I found it very informative and beneficial in dispelling my own myths. Another tool that helps is practicing the Loving Kindness Meditation.

Be Well,Screen Shot 2017-03-14 at 8.26.04 PM

AM

Previous weeks posts. Week 1, Week 2, Week 3, Week 4, Week 5, Week 6

Activities

Nourishing v Depleting Activities

When trying to evaluate areas of our lives that may help us to care for ourselves, it may be beneficial to ask one of the following questions. (You can do this with an existing page in an agenda, or start fresh by making a list, or by just asking is this an N or a D.)

  1. Of the things that I do, what nourishes me or gives me pleasure, what increases my sense of actually being alive and present rather than just getting by? (Add an N next to those things on the list)
  2. Of the things I do, what drains me, what decreases my sense of being alive and present, what makes me feel like I’m just scraping by or feeling worse or drained? (Add a D next to those things on the list)

Accepting that there are some aspects of life that just can’t change, I am consciously choosing to increase the time and effort I give to nourishing (N) activities and decrease the time and effort I give to depleting (D) activities.

Action Plan 

  • Think about a time when you faced difficulty. What are some of the things that got you through the difficulties? What are things that would sooth you, activities that might nourish you, people who you might contact for support, small things you could do to help you get through?
  • Now write down suggestions to yourself for an action plan that you can use as a framework for coping the next time you are facing a tough time or if you are feeling depressed.
  • For example, a plan may look like…I know when I was depressed last month, I was able to call Mary for support, she talked with me and on another day she visited me too. I felt better after having a nice long bath, where I lay in the water and meditated for a few minutes. I also felt better after I went for a walk, I was really able to gather my thoughts after some fresh air. Making an appointment and speaking to Dr. Jones was really helpful too.
  • It can be helpful to remind yourself that what you need at times of difficulty is no different from what you learned and practiced  in the past few weeks or in other Screen Shot 2017-03-14 at 8.23.33 PMtimes of difficulty.

Using The Breathing Space

Meditations

Loving Kindness

Home Work

  • On days 1, 3, 5 practice Loving Kindness Meditation.
  • On days 2, 4, 6 practice any of the meditations we have covered in the previous six weeks.
  • Choose one of the following activities to do: Nourishing v Depleting Activities, Action Plan, or Using the Breathing Space

New Resources

Self-Compassion.org

 

 

 

 

 

 

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.