Gathering the Scattered Mind – Week 3

screen-shot-2017-02-10-at-8-39-50-pmMy apologies for the lateness of this post! It was a hospital day yesterday and afterwards my wonderful husband surprised me with an impromptu date night, and we got in late. Also actual writing had to happen and I wasn’t sure what to say, but finally, here we go.

screen-shot-2017-02-10-at-8-36-13-pmThe theme for Week 3 in the Meditation Series is gathering the scattered mind. I’ll be honest that lately I have been incredibly scattered because I have been waiting for scan results, so this weeks practice has been pretty spotty and I’ve been so easily distracted.

For the last little while, I have been learning to live with results that don’t quite meet up with my expectations. It isn’t that they ‘re bad results, its just not the results I want. For a very long time, I was blessed after a course of scans to get the wonderful news that I was NED (No Evidence of Disease), but since I progressed last year and changed meds, I haven’t quite gotten there.screen-shot-2017-02-10-at-8-56-30-pm

Overall, I am very healthy and all the results show that I am stable. The results say my brain and organs are unremarkable (good news ironically) because it means that the cancer is still only in my lungs. The problem lies in the lungs. Although things have not changed from previous studies, within the results, there have always been comments about “stable globular masses” or “stable pleural effusions” and frankly I hate knowing that there is cancer is living in me and that my lungs are trying desperately to kill me.

I don’t know if I was under the misguided impression that NED meant that the cancer was gone or dormant, but it certainly gave me a sense of security and comfort, and not having it keeps me on edge. After all, there is no uncertainty that there is or isn’t cancer in me, its in here and its trying very hard to be active.

As hard as I try not to fixate or catastrophize, I can’t reconcile those feelings of insecurity and chaos when I know how precariously balanced I am on the edge.screen-shot-2017-02-10-at-8-57-45-pm

Maybe its all in the wording

Words.

Never say words don’t matter.

Words have power.

In my case they have the power to set my mind spinning down a trajectory of sadness and fear, which is why I’m really glad that I am posting this MBSR series, because it forces me to recognize these anxieties.

Perhaps as you have been practicing your meditations, you have found yourself wandering too?

Now that we have been practicing for a couple of weeks, you might actually be noticing how busy your mind can be. I know mine certainly is!! You may be replaying past events or have expectations of the meditation, or be noticing fearful thoughts, or even running through your grocery list of chores. Its ok.

You might even be feeling frustrated that you can’t “clear” your mind of those thoughts, or that your mind is wandering. That’s ok. The kind of meditation that we are learning with MBSR isn’t about getting rid of our thoughts and distractions. Its learning to recognize them. Its human nature to want to strive for something or achieve a goal, but here the goal is to have no goals.

I know it sounds a little nuts, but really its such a useful skill. One of the reasons I think the MBSR program is so intense, is to help us to slow down, be deliberate, and to make the skills learned part of our daily routines.

This week we will introduce a new type of meditation. Mindful movement. The idea being that by being more aware of our physical and mental state, we are allowed to be more present in the here and now. These movements encourage us to take time to pause by bringing our attention totally into the body and try to marry our breath with our movements.

Remember though, the goal here is not to have goal. Try to resist the temptation of say having the goal of relaxation. Relaxation might happen, in which case that’s great, but maybe it doesn’t in which case that’s great too, because maybe you noticed that you were carrying tension in your neck and shoulders, which leads you to notice that you are holding on to a negative event that happened earlier on in the day. Then maybe as a result of that noticing, you realize that you had been tense over a non-event and decide to let it go. That’s what can happen when we start recognize our thoughts and our body sensations.

So with that, we introduce Mindful Walking, and Hatha Yoga. I’ll break them down and link to some videos that can help with home practice below. In addition, if you practice Qigong or Tai-Chi these can also act as mindful movements.

Before I post the new practices and homework, I want to hear from you.

How have you been finding things? How did you like last weeks practice? What were some of the pleasant events you experienced? If you want to share, I encourage you to leave me a comment. If you’d like me to share it, let me know too, or else I’ll keep them private.screen-shot-2017-02-10-at-8-54-09-pm

Be well and happy practice.

AM

Activities for Week I can be found here, and for Week 2 here.

Activity I: Unpleasant Events

Last week we had the opportunity to become aware of thoughts and feeling we felt when we experienced pleasant events, this week, we are going to focus on unpleasant events. The activity will act the same as last week where you will notice and record events (for yourself) in a chart or journal.

Day What was the experience? How did your body feel, in detail during this experience? What moods and feelings accompanied this experience? What thoughts went through your mind? What thoughts are in your mind as you write this down?
Example I found a parking ticket on my car. My shoulders got tense and raised, my forehead became tense, my stomach became upset. Frustration, anger, irritation “I was sure I could park there.” “What a waste of money!” “Ugh I hate parking tickets”

 

Meditation I: Seated Mindful Breathing

Practice mindful breathing seated in a chair or on the floor, make sure you are sitting so that your spine is self-supporting. If seated on the floor, do so on a firm, thick cushion (or a pillow folded over once or twice). Whatever you sit on, make sure your hips are slightly higher than your knees.

 

Meditation 2: The 3-Minute Breathing Space

Step 1- Becoming Aware – You can do this sitting or standing. If possible, close your eyes. Then bring your awareness to your inner self by asking yourself, “What is my experience right now?”

  • What thoughts are going through my mind? (As best as you can, acknowledge thoughts as mental events, try to put them into words.)
  • What feelings are here? (Turn toward any sense of discomfort or unpleasant feelings, acknowledging them.)
  • What body sensations are here right now? (Quickly scan your body to pick up any sensations of tightness or tension, acknowledge them.)

Step 2 – Gathering – Redirect your attention from physical body sensations to sensations of your breath and breathing itself. Feel your abdomen expanding and contracting. Expansion as you breathe in and contraction as it goes out. Follow your breath all the way in and all the way out, using your breath as an anchor.

Step 3 – Expanding – Try to expand the field of your awareness from your abdomen to include your whole body. Imagine your entire body inhaling and exhaling. Try to notice your posture and facial expressions or if you note any sensations of discomfort, tension, resistance and bring your awareness to those sensations by breathing into them.

 

Meditation 3: Mindful Walkingscreen-shot-2017-02-10-at-9-51-49-pm

This can be done inside at home, or out in the real world. The key here is to be deliberate and attentive.

  1. Stand straight and tall but not stiff. Take a moment to feel your feet on the ground and let your weight be distributed evenly. Are you leaning to one side or the other, or on your toes or heels?
  2. Your hands can be folded gently at your abdomen, or if you are more comfortable just by your sides naturally.
  3. Drop your gaze slightly.
  4. Step out with the left foot. Feel it swing out. Feel the way your heel strikes the ground, then the ball of the foot and finally the toes. How has your balance changed?
  5. Feel how your body moves as your right foot steps forward. Feel the heel hit the ground, then the ball of the foot, and finally the toes.
  6. Walk at a steady pace, one that is slightly slower than you would walk normally.

Your first few steps may be awkward as you are trying to notice all those sensations that we normally do automatically. Once you have done this a few times, you won’t look like a zombie. So maybe the first time you try this, you may want to be at home or in your own yard.

Handy Tips:

  • Flat space
  • Barefoot (If you like)
  • Be slow and attentive
  • Try to focus on feeling the sensations of stretching and bending, change of balance and weight as your body as it moves.
  • Try to feel the pull of gravity and the groundedness of moving through your feet (heel….pads….toes).

 

Meditation 4: Yoga

There are many kinds of yoga and all are based on basic poses or asanas, but we will focus on Hatha yoga which marries poses (Asanas) with breath or Pranayama. Hatha yoga helps prepare the body and mind for other meditation practices. It is relatively gentle, slow and great for beginners. *

*If you have any health concerns or conditions, please consult with your physician before starting the movement portion.

Home Work:

  • Everyday: Practice using the 3-Minute Breathing Space, three times or at least once daily at pre-determined time. (I love this one, and use it all the time!) In addition complete the Unpleasant Events Journal.
  • On days 1, 3, and 5 practice Mindful Walking and record your experience and observations in your home practice journal.
  • On days 2, 4, and 6 practice Hatha Yoga and record your experience and observations in your home practice journal.

Meditations:screen-shot-2017-02-10-at-9-47-53-pm

Hatha Yoga 1

Hatha Yoga 2

Hatha Yoga 3

3-Minute Breathing Space

Mindful Walking

Body Scan and Mindful Breathing (optional)

New Resources:

Mindful Magazine – Nice site that has tons of great articles and meditations.

Living in Our Heads – Meditation Week 2

Living in Our Headsscreen-shot-2017-02-02-at-8-18-50-pm

Before I dive in to week 2 of the meditation series, I thought I’d start off by posing the question, How did it go?

For me, I chose to brush my teeth mindfully. Initially, it felt like a very very long ordeal, but by the end of the week, it didn’t seem so arduous, and I noticed flossing was much easier too.

I also chose to do my body scan before bed. I have been having some trouble with insomnia, so it really did help me to fall asleep. I can remember getting to about my mid-body and zzzzzzz. Getting to sleep easier, has translated to a more relaxed me during the day.

I would love to know how people fared and what you think so far? So post your thoughts in the comments section.screen-shot-2017-02-02-at-8-22-53-pm

Now on to Week 2!

The aim of MBSR is for us to be more aware, more often. The thought that comes to my mind is “Be here, now.” One of the things that can impede us from being present in our lives is the thought that we or something we are doing isn’t good enough or less than we expected some how. These thoughts can sometimes make us blame ourselves or judge things and ourselves negatively. These patterns can often be automatic and therefore “mindless”. What we want to do is interrupt the pattern. When we do that, we can consciously make a choice.

That all sounds wonderfully easy. It isn’t. It requires practice. We are after all trying to break some well-entrenched and sometimes unconscious habits. One of the first steps though is by noticing and acknowledging what our situation is. Just that, noticing, not changing. The body-scan is a tool to help us do that. It allows us to acknowledge and bring attention to an area without changing anything. There is no good or bad, no goal to achieve or not, you just are.

screen-shot-2017-02-02-at-8-20-58-pmMindful Breathing is another tool that helps us to ground us and bring gentle awareness to ourselves without judgment or need to change anything about our situation. We simply breathe and notice our body as we do so. I tend to have a challenge doing this one on my own and need to listen to a guided meditation. I find I am able to focus on my breath with more attention having someone guide me than if I did this on my own. Its ok if your mind wanders while you practice, it is completely normal and expected. So don’t judge or think you failed. Just notice the thoughts or the fact that you have wandered, and refocus on your breath. If it happens again (and it probably will) just acknowledge and refocus. That’s the beauty of breathing; every breath is a new opportunity to start again.

AM

Activities for week 2 below. Week 1 can be found HERE.

Activity 1: Pleasant Events

This week is an opportunity to really become aware of our thoughts, feelings, and sensations around positive or pleasant events. So everyday notice and record (for yourself) in detail how you felt. You can use the chart below as a reference.

Day
What was the experience?
How did your body feel, in detail during this experience?
What moods and feelings accompanied this experience?
What thoughts went through your mind?
What thoughts are in your mind as you write this down?
Example
Came home to a happy wiggly dog
Lightness across the face, awareness of shoulders dropping. Smiling
Happiness, Pleasure, Relief
“What a warm welcome”
“I feel so loved”
“I didn’t feel appreciated today until I got home.” “Rufus really loves me!”

Meditation 1: Body Scanscreen-shot-2017-02-02-at-8-19-55-pm

Begin with a 45-minute body scan (see below).

Meditation 2: Mindful Breathing (See Below)

  1. Using a comfortable straight-backed chair, sit in an upright position (not slouching) to help, use a pillow to help you stay off the back of the chair. If you chose to sit on the floor or cross-legged, make sure you are supported by a soft surface (comfort so you avoid numb bum) and that you are elevated enough that your knees are lower than your hips.
  2. Once seated, you want an erect spine, and if in a chair, feet flat on the floor, legs uncrossed.
  3. Gently close your eyes.
  4. Bring your attention to your body; the physical sensations of your body pressure where it makes contact, any tension, just like in the body scan.
  5. Now bring attention to your breath.
  6. Try to focus your awareness on the sensations in your lower abdomen as you breathe in and out (sometimes it helps if you place your hand on your belly).
  7. Try to follow your breath as you breathe in and out. Notice the changes and physical sensations and you breathe.
  8. You don’t need to try to control your breathing in any way, just let it happen.
  9. Sooner or later (probably sooner) your mind will wander. It OK! It happens and that’s what our minds do. It isn’t wrong or a mistake or a failure. It is an opportunity to refocus on your breath again. It ok it this keeps happening too. Just remind yourself to refocus and start again. Every breath is a new beginning.
  10. Continue this practice for 10 – 15 minutes (or more if you like). Remember that the intention is simply to be aware of your experience in each moment as best as you can. Use your breath as an anchor to reconnect you to the moment if your mind wanders.

Home Work:

  • Do the body scan 6x for week 2
  • Record what you notice each time you do the practice.
  • At different times during the week, practice 10-15 min of mindful breathing, 5-6x.
  • Activity 1 – Pleasant Events awareness
  • Choose a new routine activity to do mindfully (see description week 1).

Meditations:

www.guilford.com/MBCT_audio, track 4 (Requires creating a user account)

https://health.ucsd.edu/specialties/mindfulness/programs/mbsr/Documents/MP3/Awareness-of-Breath.mp3

Body Scan

Tips for the Body Scan

  • Regardless of what happens (you fall asleep, lose concentration, focus on the wrong body part) keep practicing.
  • If your mind wanders, just note the thoughts and bring your mind back to the scan or your breath.
  • Let go of success or failure, this isn’t a competition. Be open and allow it to happen.
  • Let go of expectations what the scan will do for you.
  • Approach your experience with non-judgment, curiosity and openness.
  • Your breath is an anchor.
  • Be aware, be non-striving, be in the moment, and accept things as they are.

When life takes you down the rabbit hole…

I’d like to begin by saying WOW and Thank you! I never thought what I wrote would resonate with so many and I want to sincerely thank all of you for all the wonderful comments, encouragement, and for subscribing. I also thought I’d share the results of #BellLetsTalk Day with you.

screen-shot-2017-01-29-at-2-13-02-am

You can see here where the funds will be directed.

Besides from being truly humbled by your overwhelming response, it really made me pause and think. There are so many people out there that might be going through a tough or stressful time. I mean life can be really crazy, with or without cancer.

We spend so much of our time rushing around. From our jobs, or school, the grocery store, or carting our kids off here and there that life just becomes so overwhelming and maddening.

Rush…Rush…Rushscreen-shot-2017-01-29-at-5-43-57-am

I promised myself one thing after my first round with cancer, that I would never be complacent in my life again.

For a time, I was hyper aware of all the beauty life had to offer. I know this will sound silly, but it was small miracles like funny cloud patterns or the way my dog would snore, to the way the city was reflected in puddles. I noticed everything. After a while screen-shot-2017-01-29-at-5-47-34-amthough, life began infiltrating these moments and I found myself falling back into old habits. I found myself complaining about the weather (as Canadians will do), feeling my blood boil when I was stuck in traffic, the stars were dimmer, and then I stopped noticing.

I had fallen back into my former life cycle.

Wake up – shower – grab breakfast – grab purse – get in car- eat breakfast – get to work – get a coffee –start the day – work – grab purse – get back in car – drive back home – dinner – marking/planning – pack up for next day – bed. Wash – rinse – repeat.screen-shot-2017-01-29-at-5-52-03-am

Monotony took over and I began living life in autopilot, the thing I swore I wouldn’t do. Maybe before cancer, it was acceptable to just settle in, but not now. I had worked hard to have that life, get that job and build my career. Cancer changed everything. The goals I wanted before, even the ones I had worked so hard for changed, there was no room for being frazzled and stressed, living in a monotonous life.

So upon the recommendation of my psychologist I enrolled in a Mindfulness Based Stress Reduction (MBSR)* course. I was hesitant initially, because really who has time, but I did it. Now you may think MBSR is hokey and all kumbaya, but its one of the only meditation modalities being studied scientifically, and used in hospitals. It was hands down one of the best things I have ever done for myself and my mental health.

screen-shot-2017-01-29-at-5-57-05-amIt isn’t for the feint of heart, because of the time commitment (8 Weeks + home practice), but I swear it is worth it. Each week I would meet with a small group of stressed out over worked harried individuals and we would learn a specific practice or a few. Then we were tasked with homework. Typically it was an exercise in attention, some sort of meditation, and a very short “journal”. Initially it was a challenge fitting it in, but somehow if you are committed, you do find time.

That was 5 years ago. I can tell you that the skills I learned in those 8-weeks saved me a few times. Like the day they told me my cancer had come back, and that there wasn’t much they could do (at that time). I had meditated while waiting for my oncologist, so I was calm and able to be rational and breathe. It allowed me to be clear headed and coherent enough to ask questions, something I likely wouldn’t have been able to do had I been extremely emotional.

As with anything, you need to practice or your skills get rusty. I have to admit that over the years, my practice hasn’t been what it used to be and once again life got in the way (dating, marriage, dogs, house, travel), so last year in September, I took the course again, this time a very willing participant. I will tell you, my mental health has been better since. I won’t lie, I don’t practice everyday (although I should), but I use it when I need it.screen-shot-2017-01-29-at-6-02-08-am

What I was thinking is, there are some online resources that are open-sources, so I thought that if anyone was willing, I would start with this post, and then the next 7 to “lead” a very rudimentary Mindfulness Group, by posting what each weeks lesson is, the practices and leave it up to you to try it out.

There is no right or wrong way, it is about learning to notice, becoming aware, and taking a moment to breathe. If you are game, Week 1 Resources will be posted below.

AM

*In 1979 Jon Kabat-Zinn founded MBSR at the Mindfulness Based Stress Reduction Clinic at the University of Massachusetts and nearly twenty years later the Center for Mindfulness in Medicine. Both these institutions supported the growth and implementation of MBSR into research and hospitals worldwide.

 

Mindfulness is the awareness that emerges through paying attention on purpose, in the present moment, and non-judgmentally, to things as they are.

– Williams, Teasdale, Segal, and Kabat-Zinn (2007)

 

Week 1 Mindfulness: Awareness & Automatic Pilot

  • When we are on Autopilot, we are more likely to become annoyed or have our “buttons pressed”.
  • Becoming more aware of our thoughts, feelings, and body sensations, we can choose not to go down “the rabbit hole” or mental ruts.
  • The aim of MBSR is to increase awareness so that we have more choices when we respond to situations, rather than react automatically.
  • To achieve this, we practice becoming more aware of where our attention is and deliberately changing the focus over and over.

Activity 1: Raisins

Take a raisin, or any small edible item. On a piece of paper, write down your immediate thoughts about that item. Next, use each sense to examine the item. Eyes, ears, fingers, mouth. Do each for a good minute. Now write down what you notice.

Meditation 1: Body Scan

Begin with a 45-minute body scan (see below). I suggest a quiet place where you can either sit or lay down. Its ok if you fall asleep. I did.

Home Work:

  • Do the body scan 6x for week one
  • Record what you notice each time you do the practice.
  • Choose one routine activity (washing your face, brushing your teeth, lacing your shoe, etc.) and make it deliberate, just like the raisin activity.
  • Eat one meal mindfully (i.e. Like the raisin activity)

Meditations:

www.guilford.com/MBCT_audio (Requires creating a user account)

https://health.ucsd.edu/specialties/mindfulness/programs/mbsr/

Suggestions/Tips:

  • Learning suggestions
  • Dress comfortably in loose-fitting clothing (sweats or yoga-type clothing work well).
  • Use a mat or pad that you can lie on the floor with.
  • If the temperature varies the room you are using you might want to dress in layers.
  • Choose a quiet spot or time when others will not be interrupting.
  • Download meditations to an iPod or other listening device for easy listening.
  • Good Luck

 

Even Warriors Get the Blues #BellLetsTalk

Today is #BellLetsTalk Day, a day where, here in Canada we have a chance to talk openly about mental health. That’s not to say we shouldn’t be talking about it every other day, but on this specific day Bell Canada will donate 5¢ for every mention of (#BellLetsTalk) in social media. So please share this, a text, or a tweet for mental health.screen-shot-2017-01-25-at-3-49-45-am

Even before being diagnosed with cancer, I battled with depression and anxiety. As early as my late teens in high school, when it felt like I had an elephant on my chest, or when my heart would beat so fast it would take my breath away. I didn’t know it back then.

It came around again after a time I had gone through a number of changes and losses (the diagnosis and death of my father from cancer, the break up of a long term relationship, changing universities and losing a year, graduating, finding and losing a job, finding another albeit crappier job) and hadn’t realized I was depressed until much later. It literally took not being physically able to get out of bed for three days for it to click that there was something very wrong. When I did get up, I promptly sought the help of my GP who referred me to a psychiatrist and put me on medication. I chose to go to therapy in addition to medication, which helped me reclaim my life.

So when I received the earth shattering news that I had cancer, I anticipated that depression might creep back into my life, so I wanted to be proactive, because frankly, life is too damn short to be depressed with or without cancer.screen-shot-2017-01-25-at-3-51-34-am

Initially, I was so focused on treatment and getting better, I didn’t think about how I felt. I knew logically that I should allow myself to feel whatever feelings I had, but what happened was the opposite. I felt so blessed that I was supported, loved, “healthy” and tolerating treatment so well that anytime I did start to feel “negative” emotions or feel sorry for myself, I’d quickly beat myself up for it. I mean how dare I feel bad when I was so lucky!! Once I completed treatment, I found myself with a lot more time, and consequently, a lot more time to think. This was when I began to feel the emotional fallout of my diagnosis.

As open as I was about my story, I always held back what I really felt. I went around with a smile on my face all the while hiding my fear and anger behind a mask. The only time the mask came off was when I was in the presence of other Young Adult survivors.

All the emotions that were suppressed around everyone else bubbled up and escaped when I would talk to other survivors. I was able to express my fears to them and not be afraid that they would fall apart, or become fearful for me, I knew I wasn’t burdening them like I would with my family. They got it, because many of them wore the same mask, they could see past the BS of “I’m fine” and they called my bluff.

To try to circumvent depression I was proactive, by seeing a physiologist. I went religiously hoping that I’d avoid the “blues” but it didn’t feel right, so sought help through my hospital. What I really wanted and needed was someone who had experience with cancer patients. The second time was the charm, but still I found myself to be extremely volatile. I imagine living with me at that time would have been akin to living in a minefield, you never knew when I’d explode.

I thought that depression would come to me in paralyzing sadness like it had before, that way I could recognize it, but it didn’t, it came to me in red hot anger. I don’t know where all the anger came from, but it burst out of me, for the trivial minute things, and was usually directed towards the people I loved most.

Again I was oblivious that I was experiencing depression until I wanted to physically hurt someone out of anger. It was that moment that I realized I needed more help. Talking wasn’t cutting it and as much as I didn’t want to take pills, I knew I had to. I am not advocating anti-depressants, they are not for everyone. In my case, they really help me function and regulate my mood so it’s not as extreme. In addition to medication, I seek counseling regularly, attend a Young Adult support group as often as I can, and meditate regularly.

There is no road map out there to navigate cancer*, no right or wrong way, you just do what you have to do to get to the other side, the truth is, what has happened is a trauma, a loss, a life altering event. Despite being grateful for being alive, we still have to mourn what we lost, whether its opportunities, time, or the ability to have a child, denying those feelings will only come back to haunt us. So please, allow yourself to grieve and feel. Seek help, talk to your peers, talk to your doctor, find a support group, reach out. Life is too short to be depressed but even cancer warriors get the blues.

*This statement is true for so many situations, from post-partum depression to the death of a family member to the end of a marriage. There is no right or wrong way to feel, but if you are not your normal self, talk to some one. If you are in crisis please call 911 or go to your local hospital.

AM

Resources:

Bell Let’s Talk  Dedicated to moving mental health forward in Canada, Bell Let’s Talk promotes awareness and action with a strategy built on 4 key pillars: Fighting the stigma, improving access to care, supporting world-class research, and leading by example in workplace mental health.

Canadian Mental Health Association  As a nation-wide, voluntary organization, the Canadian Mental Health Association promotes the mental health of all and supports the resilience and recovery of people experiencing mental illness. The CMHA accomplishes this mission through advocacy, education, research and service.

KidsHelpPhone  Kids Help Phone is a Canadian and world leader known for our expertise and continuous innovation as Canada’s only 24/7 counselling and information service for young people. Since 1989, our trained, professional counsellors have been listening to kids, often when no one else can or will. We are always there – supporting young people wherever and whenever they need us most.

Cracks and Raw Edges (Revisited)

I read yesterday that Carrie Fisher was laid to rest and that her ashes had been contained in a Prozac urn. It both mad me sad (that we lost an icon, childhood hero, and mental illness advocate), but made me laugh at her ultimate nose thumbing. It is a true testament screen-shot-2017-01-07-at-3-56-37-pmto her wit and humour. Carrie’s Leia was the first princess I ever wanted to be. I mean why not? She was plucky, beautiful, spunky and carried a blaster, what little girl wouldn’t want to be her?! Sadly I was ill equipped and lacked the follicular capacity to create those famous cinnamon buns, Cinderella it was. All humour aside, her passing reminded me that all of us struggle, sometimes it is invisible and private and sometimes it is right there in your face. Regardless of which it is, we all have the capacity and grace to pull ourselves up and make a comeback.

I don’t only live with one invisible stigmatized disease (lung cancer), but two. I also live with depression and anxiety. You may think that it came about after being diagnosed with cancer, but my first diagnosis occurred in my mid-20s. Since then, a lot has happened and understandably, depression has played a fairly significant roll in my life post diagnosis. I screen-shot-2017-01-07-at-3-43-10-pmhad an inkling that it may come around again post Dx and tried to head it off at the pass, but your body and mind have a way of telling you it needs help.

In my 20’s depression was a sleeper. It snuck up on me and slowly took over my life over the course of a year. In my cancer years, even being fully aware that it could happen again, it hit me like a truck with anger and bitterness, two emotions I didn’t need in my life or recognize as depression. Rather than allowing my life to be dictated by these volatile emotions, I sought out help. Lots of it! I went to Young Adult support groups, saw a psychologist, was part of an online lung cancer group, and finally took medication. I needed it all, and it helped.

Two years ago I tried weaning off my meds, I wrote about and shared the experience with The Cancer Knowledge Network. The entire experience was both eye-opening and rather terrifying. I share it again here because I want people to know that there is no shame in having a mental illness, and there is no shame in asking for help when you need it. It is not a weakness but rather a great strength and sense of self-awareness.

I have cracks and they are starting to show. Actually I’m crumbling. I tried an experiment, it failed. Or maybe it was a raging success, because I’ve come to the grim realization that for the rest of my life I will depend on anti-depressants to regulate my mood. I suppose that you should be careful what you wish for, because you just might get it…

I wanted to see how I would fare weaning myself off of my meds just to see what it would be like to feel normal. Maybe I’d be happy and satisfied and in control of my emotions, because for 4 years I’ve felt numb. It felt like I wasn’t experiencing my life as fully as I should. I missed the raw edges because I wasn’t sure if what I was feeling was as intense as it should be. I was happy and sad but never really happy or really sad, which is why I suppose I began taking meds in the first place. The highs and lows were just so extreme that I was a walking minefield.

Afterwards though I was even keel, but dulled somehow, at least I felt like I was dulled. So I thought was could it hurt?

It’s been almost a month and I’m feeling. Feeling angry and bitter, sad and depressed. I actually hate myself right now. I don’t like wallowing in self-pity, but that’s exactly what I’ve been doing. I want to curl up into a ball and sleep. I want the world to go away and just leave me alone. I hate feeling this way! I hate that I can’t be happy for others without feeling sorry for myself. I hate thinking that my life has been a series of tragedies that I just happen to scrape through. I hate thinking that I should be happy because I’m alive. I hate not getting what I want, what I’ve worked hard for. I hate self-pity!

So on Monday I will fill my prescription again and hope that the edges will become dulled so I can be the person I was a month ago before this brainchild of mine, before I became myself. I will become comfortably numb like the song says and I will feel…less. I won’t hate myself so much, and I’ll go on. I just wish I didn’t need pills to keep me from being me, a me who apparently is bitter and angry even if I am grateful to be alive, because sometimes even that isn’t enough.

It is my hope that some one reading this will reach out if they are struggling, because sometimes it is just too much to hold, and you need someone to help you let go.

AM

Resources: screen-shot-2017-01-07-at-3-45-59-pm

CAMH

I Need to Talk to Someone

Mental Health Help Line

Mental Health Facilities 

 

We Aren’t Rivals, There’s Just Lots of Work To Do!

Its snowing again and I can’t sleep.

Maybe its because I can’t stop thinking about an article I saw online. Even the openning lines seem to fan the fires of competition, when in most cases there isn’t any. My knee jerk reaction is that this is lazy writing. It builds conflict between disease groups by providing “sound bite” comments as proof and then complete ignores the issues faced by patients.

Let me begin by saying, I think all cancer is awful and never once have compared myself to my peers whether in the lung cancer world, young adult world, or in the cancer world at large. I have lost too many friends to count from every type of cancer, perotid gland, ovarian, adrenal gland, oglidendroma, etc., so I really try not to discriminate.

Articles like the one above piss me off because they skirt the issues, so let me make them clear and plain for all to see.

  • screen-shot-2016-12-17-at-6-18-13-am
    NIH funding

    Not all cancers are funded equally – That means funding for research and publication of said research is laking in many cancer groups. When we compare disease groups in this sense, we are merely trying to state the disparity. For purpose of this arguement, I will compare lung cancer funding to breast, and prostate cancers. The facts are that for every patient who died form their respective disease, a lung cancer patient “received” $1479 in research funds, a breast cancer patient “received” $19250, and a prostate cancer patient “recieved” $9432, I don’t imagine those numbers have changed much *since 2012. screen-shot-2016-12-17-at-6-23-51-am

Just looking at the above, it is evident that there is a large gap in funding. This means researchers in the breast group are able to fund, publish, and present more research. One should also ask if there is a disparity within each disease group. Is there research being screen-shot-2016-12-17-at-6-23-41-amdone on metastatic patients, or patients who are outliers? I imagine they feel neglected too. In the U.S., part of this problem may have just been addressed with the signing of the 21st Centuries Cures Act. The rest of the world however  may not have a course correction, so we need to be able to recognize that in order to have equality, we need to point out the inequities. Then instead of cutting the pie smaller, we need to bake a bigger pie. We need to break down barriers, and share information. More and more we see that the driving mutations in different disease groups are the same.

  • Access to patient resources is different – As a patient trying to access a support group or assistance with services, I can tell you there is very little out there for patients with some cancers or diseases, where as there can be a glut for others. Even as a young adult with cancer it is difficult to access the services needed to cope with a cancer diagnosis and the reprucussions of treatments. The advent of online groups and social media is wonderful because people can connect, but groups can often be hard to find or “word of mouth” where as I can almost guarantee there will be a breast or lymphoma group in every centre. Again, the comparisson is made to illustrate the inequity, not to spur on competition.
  • Perception is different – I can attest to the stigma of having lung cancer. Any and almost every time I inform someone that I have lung cancer, the first thing I am asked is whether I was a smoker. I have also had people let me know about services they provide in the cancer centre when I am wearing my pink scarf, only to tell me how unlucky I was not to actually have breast cancer (I swear this happened) once informed I had lung. The truth is, most people assume if you got lung cancer, you must have gotten it from smoking. This illustrates the need for the lung cancer community to educate the public (and some medical personnel) that there are many risk factors to getting lung cancer (Radon, genetics, the environment, having lungs, smoking, unknown factors), and that smoking is a risk factor for many diseases, like heart disease, tooth decay, oral cancers, COPD, etc. The truth is, there is a stigma attached to having some cancers. Let’s get it straight, NO ONE DESERVES CANCER!!!!
  • Cancer is not one disease – The word cancer represents about 100 different diseases, and each one varies with the individual it effects. We are just now learning what drives some cancers, but there is so much that isn’t known. How can anyone possibly say all cancer is the same, no it isn’t. Not in the way it is diagnosed, staged, treated, maintained, long term side effects, recurrance rates, mortality, etc. What is the same is how profoundly it effects every single person it touches.

That is why I’m pissed off. They totally ignored all of those things and made it look like we can be catty children comparing ourselves for some sympathy prize, well I’m calling bullshit.

Cancer patients, at least the ones I know, and I know a few, young and old, from all over the planet are so far from this picture they paint that if they saw this article I think they’d either be hurt, apalled, or laugh because they are the most intelligent, compassionate, generous, kind, interesting people I have ever had the privilege of meeting. They have been through upheaval; poisoning (through radiation or chemo); some have been ripped open; they have gone through therapy (physical or psychological); have gone back to work; to school; retired; have traveled; become advocates and educators; become researchers; become parents (grand parents); become husbands or wives; recurred; and some sadly have passed on. So please give us more credit that calling us rivals.

Rather than write a bait-click article, do a little digging and write about the issues.

AM

*Figure 3 & 4 taken from Lung Cancer Canada, Faces of Lung Cancer Report: Research and Analysis of the Lung Cancer “Waiting Game”, 2016

 

 

The Need for Lung Cancer Literacy

November 1st marked lung cancer awareness month in Canada and the US. It received little fan-fare and still largely goes un-noticed. After all we don’t have cute logos, fancy ribbons, big marketing campaigns, and many media outlets just don’t pick up the lung cancer story. So what do we have? We have numbers, we have stigma, and we have hope.

screen-shot-2016-11-04-at-8-16-07-pmEvery year 28,4001 Canadians and 221,2002 Americans are diagnosed with lung cancer. Of those diagnosed, 20,8003 in Canada and 157,4994 in the US will have their lives taken from this disease. The truth is that while many other cancers have improved 5-year survival rates, lung cancer still remains one of the lowest at about 17%5.

One of the many reasons for this in my humble opinion is the lack of lung cancer literacy, or for lack of better words awareness. With most diseases, awareness doesn’t always mean action, but for us, awareness and education is key in convincing people to act. Most North Americans think that breast cancer is the largest cancer killer, but in fact, it is lung cancer. Actually, lung cancer takes more lives than breast, colorectal, and prostate cancers combined6.

screen-shot-2016-11-04-at-8-16-44-pmIf one has asked me what type of cancer I thought I may get in my lifetime, seven years ago before lung cancer happened to me, I would have thought it would be breast cancer. After all, I am a woman with breasts and like many, I didn’t think that because I was human and had lungs that I’d be at risk. The reality is, one of the fastest growing segments in lung cancer is the population of young, non/never smokers (17.9%)7. Add to that the population of people who had previously quit smoking (60%)8, and you begin to get a different picture of lung cancer.

The sad truth is that lung cancer is usually diagnosed in late stages (Stage 3 and 4) meaning the disease is already advanced, complicated and difficult to treat. Another reality faced by patients and their caregivers is the stigma associated with the disease. We have known the connection between tobacco products and cancer for decades, the problem is the widespread assumption that it is the only cause of lung cancer, leading to a blame the victim mentality. The truth is, the greatest risk factor for getting lung cancer is having lungs. That of course is followed by tobacco, radon, genetic and many unknown factors.

Lung cancer is not just one disease, it is far more complicated than was once thought. It is categorized as small cell (SCLC) or non-small cell (NSCLC), but can then further be divided by cell type and beyond. In the past decade alone, they have discovered numerous genetic drivers to lung cancer, each requiring a treatment plan that caters to the nature of the cancer.

Despite the abysmal mortality rate and the growing number of newly diagnosed patients, funding for lung cancer research is grossly disproportionate. In the US the National Institute of Health Research (NIH) calculated the dollars allocated per death across many disease areas and found that lung cancer received only $1479 as compared to $2131 for heart disease, $5,804 for colon cancer, $19,250 for breast, and $9,647 for all cancers9. In Canada, only 7% of cancer specific government research funding is allocated to lung cancer but what is worse is less than 1% of private cancer donations goes towards lung cancer research10.

It may sound very doom and gloom, but there are many rays of hope. Through the dedication of researchers, oncologists, nurses, pathologists, patients, and so many more, a number of breakthroughs have been made in diagnostics, less invasive surgical options, revolutionary treatments such as targeted therapies and immunotherapy and are being used in clinics today. The winds of change are blowing and with more awareness and research dollars, real change can be made. You can help by donating to lung cancer research, volunteering at a local organization, being compassionate to patients, or by sharing this article.

References:

1. Canadian Cancer Society – 2016 Canadian Cancer Statistics. Available at: http://www.cancer.ca/~/media/cancer. ca/CW/cancer information/cancer 101/Canadian cancer statistics/Canadian-Cancer-Statistics-2016-EN.pdf?la=en. Last accessed on October 19, 2016.

2. American Cancer Society. Cancer Facts & Figures 2015. Atlanta: American Cancer Society; 2015. pp.4.

3. Canadian Cancer Society – 2016 Canadian Cancer Statistics. Available at: http://www.cancer.ca/~/media/cancer. ca/CW/cancer information/cancer 101/Canadian cancer statistics/Canadian-Cancer-Statistics-2016-EN.pdf?la=en. Last accessed on October 19, 2016.

4. Centers for Disease Control and Detection: Deaths: National Vital Statistics Report, Final Data for 2012. NVSR Volume 63, Number 9. 85 pp. (PHS) 2014 – 1120, http://www.cdc.gov/nchs/data/nvsr63/nvsr63_09.pdf

5. Lung Cancer Canada. 2015 Faces of Lung Cancer Report, Toronto: Lung Cancer Canada, 2015. pp6.

6. Lung Cancer Canada. 2015Faces of Lung Cancer Report, Toronto: Lung Cancer Canada, 2015. pp6.

7. Centers for Disease and Prevention. Morbidity and Mortality Weekly Report, “Cigarette Smoking Among Adults- United States. 2006,” November 9, 2007/56(44): 1157-1161, Table 2.

8. Centers for Disease and Prevention. Morbidity and Mortality Weekly Report, “Cigarette Smoking Among Adults- United States. 2006,” November 9, 2007/56(44): 1157-1161, Table 2.

9. Funding Source: http://report.nih.gov/categorical_spending.aspx Source of Actual Deaths: Centers for Disease Control and Detection: Deaths: National Vital Statistics Reports, Final Data for 2012. NVSR Volume 63, Number 9. 85pp. (PHS) 2014 – 1120 http://www.cdc.gov/nchs/data/nvsr/nvsr63/nvsr63-09.pdf

10. Canadian Cancer Research Alliance 2007, CRA 2009, Canadian Cancer Society 2010.

Why do I feel so bad for feeling bad?!

I hate to admit it and usually I wouldn’t and don’t, but here it is. I am struggling!

At least I feel like I am. Normally I would keep all this to myself and just bury it and I really don’t have a good reason for sharing my funk, but for some reason I feel compelled to do so. Even as I type, I hesitate. I fear that those that read this may think I am being negative or that something is wrong.

I don’t have a good answer to why I’m in a funk, but I am. Despite my husband desperately trying to pull me up, despite having a great weekend in Ottawa, despite getting good results back from my first CT. The drugs work, my tumors are shrinking and I’m still feeling down.

Maybe its because my edema is bad and I can’t seem to get it under control. Maybe its because my joints ache and I can barely get down the stairs. Maybe its because I’ve been cooped up all summer thanks to the hella hot and humid days. Maybe it because we are house rich and cash poor and I really want a vacation. I really don’ t know.

Those reasons just don’t seem like good enough reasons to be mopey though, not when you know people who are living their end days, not when you know children who won’t have mother’s, not when you know people who don’t have any options left. My crap is trivial.

I don’t know why being down or negative is such a bad thing, but I do know that when I feel that way, I feel guilty. Even my last piece for CKN bordered on the negative. I was hesitant about writing that too. But why? Why can’t a girl wallow?

I’m not advocating giving my mood a postal code or anything, but why can’t I just be mopey and pissed off for a little while, no questions asked, no concerned looks, no judgment (especially self judgment). Why do I feel bad for feeling bad?!