Nine Years, Nine Lives

Today is a pretty remarkable day in my life. The day my life was changed, utterly and completely – nine years ago. When I think about that, I am brought to tears. After all I wasn’t supposed to be here. If it weren’t for luck and scientific breakthrough, I wouldn’t be. There are times I wonder why I am, still here that is. If it were any other kind of anniversary, I would be celebrating with a party or a cake. Because it’s my cancerversary, my day is spent reflecting on my blessings and thinking of all the dear friends I have lost along the way.

In years past, I have been so busy that the day has almost gone by without notice, can you imagine? A day not thinking about cancer, a normal day. I don’t have many of those. 2015-08-26 21.49.543,285 not normal days, just off, abnormal like the cancer. Some days I feel every second. On other days, time flies.

I  live a condensed life, condensed experience, condensed joy.

Joy.

 

This year is kind of a monumental year. I turn 40 in just more than a DSC05142month. 40! Middle aged (when did that happen :o)! Believe me, I didn’t think I’d ever see my 35th, let alone my 40th. When I was diagnosed nine years ago, I didn’t think I’d get to do a lot of things!

I didn’t think I’d ever be able to buy a car or a house. I didn’t think I’d get to travel. I didn’t think I’d get the chance to fall in love. I didn’t think I’d ever advocate for change. What did I know!? I had no idea what potential my life had. I had no idea of what I could achieve. I had no idea what life truly held. I had no idea what it meant to live. I mean really live.

IMG_2159It shouldn’t take critical or terminal illness to teach us that lesson. 2016-07-07 18.54.45-1Why can’t we all live genuinely, authentically, passionately, no time for B.S. kind of lives.

Time.

When you realize that time is really the precious commodity that everyone is after, you begin to value it over everything else. Things are just thing and are transient. Money can be made, of course it can buy comfort, but it’s just a thing. Time on the other hand provides us with opportunity. Opportunity to spend it on doing what we love. Opportunity to spend it wisely. I say that, because for us, it’s limited.

Our clocks start ticking they day we are born. So we can chase money and fancy things, and spend all that time working and running in circles. Or. We can open our eyes and see how beautiful the sunrise is, especially when you are with someone you love. How magnificent it is to experience the cultures of the world. How wonderful it is to be loved.

Love.

I wouldn’t be here without Love. The love (and kindness) of my medical team. Love from my family and friends. The love of my dogs. The love of my life. Thank you all! I couldn’t do it alone. I know together, we move forward.

To another nine years,

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

 

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.

 

 

 

 

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.