Timing, togetherness and tiny bits of brokenness….(or, why I’ve decided not to have surgery right now.)

“Our wholeness doesn’t bring us together”.  – Richard Wagamese

As soon as I sat to listen to this author speak I knew I had landed in the right room at exactly the right time. Out came my notebook, so that I could try to remember the lines that flowed out of him with such ease, and wound their way directly into the living, breathing bits of me. Richard’s story is terrifying, shameful, sad, frustrating, inspirational, beautiful and empowering, all at once. He tells the story of his trauma with grace, with strength, with beauty. He tells the story the way that I dream of telling stories. When he said that it isn’t our wholeness that brings us together, but the broken bits, I wanted to weep. I wanted to stand up and cheer. I felt relief. I felt hope. Because he’s right. For me, he’s right, anyway. I remember the persistent phrase ‘I know something you don’t know.’ playing over and over in my head, silently, but always there, once I was diagnosed. Being broken, in whatever way that may be, carves out some depth that allows you to understand others who are also broken. Who have had to put themselves together again. Who may have to do so down the road, again, because, as Richard so eloquently put it, sometimes there is a tiny “untended little bit of brokenness” that decides, unbidden, to rise up and stop you in your blissful tracks.

He also spoke about the perfect combination for him – the two things that helped him through his healing – ceremony and therapy. Right away I knew my perfect combination: Forest bathing, and counselling. I’ve continued to walk every day, getting stronger and stronger, and talking things out with a counsellor once every few weeks. It’s working.

I know it’s working, because gradually, over the past month or so, I have thought a great deal about healing. About getting stronger, physically and otherwise. About moving forward. About feeling hopeful. Consciously changing the way I speak to myself. About believing in my strengths and focussing on what makes me happy. My physiotherapist gently suggested ‘There’s no such thing as too much healing.’ Again, I wanted to weep. To stand up and cheer. Because I want more healing time. I need more healing time. I need to change the way I see myself in the mirror, and change that from ‘broken’ to ‘healing’. To ‘stronger than yesterday’. To ‘strong.’

How can I do that if I allow myself to be cut into again in just over three months? How can I allow my body – worse, force my body back to square one when I’m just starting to make progress?

The answer has come to me gently and slowly. It’s simple. It’s obvious. I cannot. Not yet. Maybe not ever. But definitely not yet.

Richard looked at us and pronounced: “I don’t want to be resilient anymore.” And I understood. I don’t want to be constantly tapping all of my resources just to survive. I don’t want to be ‘handling the pain really well’. I don’t want to be popping painkillers every four hours so that I can function with my children. I don’t want to launch myself into another potential disaster where I’m on antibiotics ten times over the course of a year. I want to heal.

And then:

“There’s a field out there where I can bark and laugh and play.” 

Right?? I want to bark and laugh and play! (Well. Maybe not the barking. But you know what I mean.)

Actually, depending on what the moon is doing, there could be some howling. But I digress.

So. My surgery was booked for September 4th. I haven’t cancelled it officially yet. But I’ve decided that’s happening tomorrow. And I will tell my surgeon that I’m not ready. That I don’t want to rebook at this point. That I will let him know. And I will decide when and if it happens. When I want to have the operation. I will take control of this one thing.

I will be okay with, maybe even celebrate, the reality that it is not our wholeness that brings us together, but the chips and cracks and scars and stories.

I had a lovely moment today on my walk. The bottoms of my feet and my shins were screaming at me. The pavement is hard on my feet. So I moved over the 30 cm I needed to in order to walk on softer ground. And my body answered instantly. Yes. That’s what I need. A soft place to land.

Softer places.

Timing, togetherness and tiny bits of brokenness….(or, why I’ve decided not to have surgery right now.)

“Our wholeness doesn’t bring us together”.  – Richard Wagamese

As soon as I sat to listen to this author speak I knew I had landed in the right room at exactly the right time. Out came my notebook, so that I could try to remember the lines that flowed out of him with such ease, and wound their way directly into the living, breathing bits of me. Richard’s story is terrifying, shameful, sad, frustrating, inspirational, beautiful and empowering, all at once. He tells the story of his trauma with grace, with strength, with beauty. He tells the story the way that I dream of telling stories. When he said that it isn’t our wholeness that brings us together, but the broken bits, I wanted to weep. I wanted to stand up and cheer. I felt relief. I felt hope. Because he’s right. For me, he’s right, anyway. I remember the persistent phrase ‘I know something you don’t know.’ playing over and over in my head, silently, but always there, once I was diagnosed. Being broken, in whatever way that may be, carves out some depth that allows you to understand others who are also broken. Who have had to put themselves together again. Who may have to do so down the road, again, because, as Richard so eloquently put it, sometimes there is a tiny “untended little bit of brokenness” that decides, unbidden, to rise up and stop you in your blissful tracks.

He also spoke about the perfect combination for him – the two things that helped him through his healing – ceremony and therapy. Right away I knew my perfect combination: Forest bathing, and counselling. I’ve continued to walk every day, getting stronger and stronger, and talking things out with a counsellor once every few weeks. It’s working.

I know it’s working, because gradually, over the past month or so, I have thought a great deal about healing. About getting stronger, physically and otherwise. About moving forward. About feeling hopeful. Consciously changing the way I speak to myself. About believing in my strengths and focussing on what makes me happy. My physiotherapist gently suggested ‘There’s no such thing as too much healing.’ Again, I wanted to weep. To stand up and cheer. Because I want more healing time. I need more healing time. I need to change the way I see myself in the mirror, and change that from ‘broken’ to ‘healing’. To ‘stronger than yesterday’. To ‘strong.’

How can I do that if I allow myself to be cut into again in just over three months? How can I allow my body – worse, force my body back to square one when I’m just starting to make progress?

The answer has come to me gently and slowly. It’s simple. It’s obvious. I cannot. Not yet. Maybe not ever. But definitely not yet.

Richard looked at us and pronounced: “I don’t want to be resilient anymore.” And I understood. I don’t want to be constantly tapping all of my resources just to survive. I don’t want to be ‘handling the pain really well’. I don’t want to be popping painkillers every four hours so that I can function with my children. I don’t want to launch myself into another potential disaster where I’m on antibiotics ten times over the course of a year. I want to heal.

And then:

“There’s a field out there where I can bark and laugh and play.” 

Right?? I want to bark and laugh and play! (Well. Maybe not the barking. But you know what I mean.)

Actually, depending on what the moon is doing, there could be some howling. But I digress.

So. My surgery was booked for September 4th. I haven’t cancelled it officially yet. But I’ve decided that’s happening tomorrow. And I will tell my surgeon that I’m not ready. That I don’t want to rebook at this point. That I will let him know. And I will decide when and if it happens. When I want to have the operation. I will take control of this one thing.

I will be okay with, maybe even celebrate, the reality that it is not our wholeness that brings us together, but the chips and cracks and scars and stories.

I had a lovely moment today on my walk. The bottoms of my feet and my shins were screaming at me. The pavement is hard on my feet. So I moved over the 30 cm I needed to in order to walk on softer ground. And my body answered instantly. Yes. That’s what I need. A soft place to land.

Softer places.

Softer places.

Caves, cacophony and catharses (Or, yay Spring.)

I have to. I should. I need. I can’t. Of course.   I want. I don’t want. I can.

This is the basic message that has been floating around in my head over the past 24 hours or so. Banishing these phrases from my daily vernacular, twisting my brain around, stretching it this way and that, rearranging thought patterns. How fascinating to realize that somehow over the course of my life I have learned never to buy a lotto ticket because I’ll never win, never to roll up the rim on a Tim Horton’s cup because I’m not lucky, never to repair things that need repairing in my house because I can’t do home improvement. How I cringe at the word selfish, and physically recoil when it’s suggested that I practise saying I want. That I use the refrain ‘of course’ when things break down in my car, or my dishwasher, or my fridge. Because obviously, if something’s going to go wrong, of course it’s going to happen to me. Cacophony.

How cool is it to call bullshit on all of that?

Seriously, though, this therapy thing is amazing. Everyone should do it at least once in their lives. Even if for no other reason than to have someone sit across from you and help you stretch your brain. Because I’m telling you, it’s like massage therapy for your head.  Sure, it hurts a bit to get to the really tight knots. And some knots are way more stubborn than others. But when those knots release – ahhh… relief.

So my goal right now is to see if I can work toward eliminating that awful negativity from my self-talk. It’s a word game. I’m good with words. Challenge accepted, and all of that. So maybe more than one goal.

Move. Pick apples (the stretch I do faithfully three times a day that has allowed me to reach the top shelf of my spice cupboard without a chair). Create space. Breathe.

Move. Pick apples (the stretch I do faithfully three times a day that has allowed me to reach the top shelf of my spice cupboard without a chair). Create space. Breathe. This was taken on the day I was two years cancer-free. Yay. Still here.

Another goal involves sort of an unspoken agreement I’ve made with a friend. Move. Not houses, necessarily, but our bodies. Often. Consistently. Purposefully. And it’s quite beautiful.

It's difficult to say 'I can't' when looking at beauty like this.

It’s difficult to say ‘I can’t’ when looking at beauty like this.

Yesterday I had what could arguably be the most perfect kick-off to a weekend. Physiotherapy at 3:30, counselling at 4:30, walk around a lake at 6:00, pasta and wine by 7:30. When I told my therapist that I had some bruising after the last session and that I felt like I’d been hit by a truck the following day, he winced and asked if he’d gone too hard on me. I assured him that he had not. The same went for yesterday’s session. Hard work. A little bit of bruising today. And tomorrow, I know I’ll feel fantastic. He assured me that everything he’s doing is good for me. And it is. I can feel the change in my body already. It’s a slow process, but when I realize that it’s been awhile since I pushed myself up against a door frame in an effort to dig the frame into my muscles enough to provide some release, I know good things are happening. Yesterday, during our walk when I told my bff that I had just finished those two appointments, her reaction was ‘Whaaaat?? Why would you do that to yourself??’ because she knows how much pain both can cause. My response: ‘Are you kidding me? It’s the perfect way to start a weekend!’ Space between my shoulder blades, space in my head. Bring on the weekend.

We have walked over 80 km in the past two weeks. Almost daily, between 5 and 10km, clearing our heads, and getting stronger. Today, I went for three walks outside. One, 5.6km around the lake – the box-ticker of a walk that says I’ve exercised for an hour, which is, according to my oncologist, as effective as chemo. The two others, to play. To bring a friend to see what someone brought me to see a few days back – the seemingly impossible ice cave over rushing water. Seeing how much less ice there was today (twice) compared to a few days ago begged some reflection. Ice, stuck there for months (and months) of winter, freed and then melted by the rushing of water, and the persistence of sunshine. It lines up well with what’s happening with me. My body has been stuck, and is gradually being freed from what has felt like a cage. My mind has been stuck, and there is space being made there. Still some ice left to melt, but I can see that once the freeing process starts, it can happen quickly. The key may be to see the beauty in all of those stages.

Under the ice cave. It won't last long. But we walked on it today, in 18 degree weather. It's stubborn.

Under the ice cave. It won’t last long. But we walked on it today, in 18 degree weather. It’s stubborn. And very beautiful.

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In front of the ice cave. Last week that tree was surrounded by ice. Today, it’s almost free. I kind of like that.

I might go back tomorrow to check on its progress. Because I want to, and I can. I should don’t want to do laundry instead. I need want to do this.  And so I will.

Motherhood, Mayhem and Mindfulness

I took my family for a walk today – a good long one, around the lake and back, which means just over 9km. The boys rode their bikes; I walked and ran intermittently to keep up.  We met up with a friend of mine and her girls – sort of a pre-Mother’s Day get together, an unspoken celebration of the fact that we have brought these strong little bodies of boundless energy into the world, and that we too feel strong. Full of energy enough to keep up with them, run after them or push them along, whatever the occasion demands. Aside from a few sprints down some hills in the woods, today was the first time I have run for anything over a minute in months and months. It felt good. It’s good to feel joy. I feel thankful. Thankful to be able to run alongside my son’s bike and laugh with him. Thankful to be able to let my muddy dog off her leash for her second and third swims of the day. Thankful that today I get to be their mother. 

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On a walk I did earlier in the week I talked with a friend about how good it is to feel the sun shining, and that even if it’s only been in small doses thus far, every little bit helps and everyone is starting to feel like we have our energy back. It changes the way we see things. We talked about the way the mist looked over the water, we marvelled at the juxtaposition between the water on either side of the dam we walked over. Sighed at the texture in the foam collecting on the water. Talked at some length about the different mosses growing in the concrete wall, the colour of the dead bullrushes in the swamp we passed, and rolled cedar branches between our fingers and made primal happy sounds at the smell it produced. And we laughed at how obvious it was that Spring is finally pulling us out of our ruts. Allowing us to surface a little, to breathe a little more deeply. Maybe even making us a little giddy. And I will take giddy over the way I felt a month ago, thank you very much. To be able to see my way through grief to beauty and joy is somewhat akin to sliding on that second-skin pair of jeans I thought I lost behind a dresser, or catching the scent of Oscar de la Renta in the air and flashing back to hugging my mother as a child, or reconnecting with my inhale-2-3-exhale-2-3 running pace like I did today. It’s the ‘ooohhhh I remember you’ feeling that makes my shoulders relax just a little more and yanks the corners of my mouth into a smile. 

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Last week a friend of mine was in town, one who has just lost her mother suddenly and who is breathing her way through that grief minute by minute, day by day.  I have another who is slowly losing her mother, and who is doing an entirely different kind of grieving. For yet another friend, tomorrow will mark the first Mother’s Day without her mother. Fresh pain. These friends of mine have to be commended for their ability to see joy through their grief. I watch them do it whenever I see them, parenting, laughing, skipping rather than walking when the mood strikes. I love them for this; I know how challenging it can be. I know that they will spend their days tomorrow pushing their grief to the side so that they can mother their children and stepchildren. And it will be crushing and profoundly sad, and I will be thinking of them. I cannot fully comprehend that pain, but on some level I can relate. This Mother’s Day will be the second one that is changed for me. I remember last year wondering if it were going to be my last and being completely paralyzed by the terror that this particular reality slammed into my chest. This year I wonder the same. That’s just my new reality. But I am going to spend it filled with gratitude and I am going to make every effort to see the beauty wherever I can on my hike tomorrow with my boys, just like my beautiful friends find ways to laugh through the haze of grief. 

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I’m going to leave the dishes unwashed after I blissfully enjoy every morsel of the avocado and cheese on toast that my ten year old is currently concocting in his head for me. I am going to be purposefully oblivious to the war that will likely erupt between him and his brother when they compete to be the one to carry the plate upstairs to me. I am going to deliriously ignore the unmatched socks with holes in them they will likely wear even though I folded 62 pairs of socks a week ago. I will not bat an eye when my eight year old insists on wearing a bow tie and suspenders on our hike. I will pack extra marshmallows for the hot chocolate. I will not ‘hurry and miss everything’, like my youngest has, rightfully, accused me of doing. Tomorrow, I will be mindful in my making of memories with them. 

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When we are done our hike, I will go and see my own mother, who has had one hell of a year as a mom. She once said to me that it didn’t matter how old you were when you lost your mother, that no matter how ready you think you are to lose your mom, you are never ready. That on some level we still feel like an orphaned child when our mother leaves us, even if we are mothers or grandmothers ourselves. Tomorrow, after our hike, my boys and I will go and hug the pillar of strength that is mother to me, and Nana to them. And maybe I might hug her a little tighter this year. Because I can. And for that I am ever so grateful. 

Nature’s Aid, readjusting, and looking forward.

So it’s been awhile since I last blogged. I know this, and have thought about it often. Sat down at my computer and came up with several earth-shattering ideas for the next blog, but some things just need to get worked out in the somewhat sacred private world of home, and in my head.

That said, there are a few blog-worthy moments I have had over the past few weeks. The burns I ended up with a week post-radiation were pretty intense, and likely compounded by some of the locations (it’s hard to ignore a burn under your arm). I had my favourite nurse and her various companions coming to my house on a regular basis, coating me with Flamazine (still ‘flamazing’) and experimenting with mesh wraps, trying (with minimal success) to convince me to wear them based on their resemblance to some 80’s throw-back lingerie. It did help, but only as long as the cream was on in a thick, very messy layer. As for the lingerie appeal, it was a big of a stretch.

I was in a lovely little shop downtown, looking for a little something to bring a friend who had just had her thyroid removed when I came across this product.

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I bought some for her, some for me, and took it home and slathered some on, covering my burns back up with bandages and getting on with my day. The next morning, I asked for re-bandaging help from someone who knows how, and as I was removing the old bandage with very little discomfort, I was pleasantly surprised to see that I had apparently slathered on a little magic, because my burn had literally healed itself at least 50% overnight. Aloe vera, Vitamin E, Witch hazel, Rosemary and Tea Tree are the ingredients. Apparently you can eat this stuff if you want to, it’s that natural. That works for me. I abandoned the Flamazine in favour of this little wonder, and my burns healed so quickly that I was able to go and get ‘re-adjusted’ with no concern for the state of my skin this past week in Winnipeg.

Speaking of Winnipeg, what a surreal trip that was. I don’t know how many of you have ever been boob-shopping, but it’s a very strange experience, to say the least. To have the surgeon’s right-hand-nurse cheerfully stride into the room and hand you these, announcing ‘So now we get to play with some boobies!’ is a little out there, even for someone with my lack of filters.

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My surgery is just over six weeks away, so they tell me, and anyone who’s ever had to have tissue expanders in their bodies for almost 8 months knows just how much I’m looking forward to getting rid of them. Without the ability to properly demonstrate their nature, I will simply say that I could probably knock on my wooden door and get more give from it than from these expanders. They are definitely doing their job, expanding muscle and tissue, a fact to which my massage therapist would attest. The muscles between my shoulder blades are tense enough these days to warrant the press-up-against-the-door-frame self-administered pressure point massage technique several times a day, although he assures me that’s a bad idea. I go with whatever works, and am thankful to be connected with people who give great back-cracks and massages.

In the meantime, I am trying to re-train my body to sleep, which is proving to be no small task. Melatonin seems to help a little bit, or at least my body feels somewhat more relaxed after having taken it. Apparently radiation can have an effect on the body’s ability to produce Melatonin, which it normally does quite naturally. This could explain my almost complete inability to sleep for any length of time at night. Armed with some of this, I am charging myself with the task of detoxing my body in time for surgery and learning to sleep again.

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With radiation burns a thing of the past and my days free for healing, I am starting to get outside again. Winter is coming. It’s going to be a good one.

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I’m running for…(or, what I would write in the little space on the sticker if I had room)

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This little sticker, which I will put on my team shirt tomorrow, measures about 5×7. Last time I ran this race I wrote ‘My Aunt Patrice’ on my sticker. My husband at the time wrote ‘My mom’ on his. Both were, and still are, breast cancer survivors, and both will be on my mind tomorrow when I walk the 5km race with my team, Tanya’s Tigers. There is rain in the forecast, so I’ve hunted down an umbrella so that my eyebrows don’t wash off in the rain during the walk. Some things take a little more planning these days.

Walking with me tomorrow will be 70 or 80 people who include my children and ex-husband, my parents and my sister, friends, colleagues, students, parents of students. They have all joined this walk to show me support and I am certain many of them have their own personal reasons for running or walking tomorrow. For the first time, I have really given some thought to why I’m doing this walk tomorrow, five days into radiation treatment, six months post-surgery and one month post-chemo. I don’t know that I will have ever walked with more purpose. 

I am walking because my eldest child has a beautiful grin and I want to witness that grin when he’s 20, 30, 50. 

I am walking because I want to see how my youngest channels his crazy monkey-like energy as an adult. 

I am walking because I want to meet their first girlfriends, or boyfriends, or whomever they would like me to meet. 

I am walking because I don’t want their daughters affected by this disease. 

I am walking because I want to be around when my Dad finally says it’s his last hunt. 

I am walking because I want to continue to watch my Mom morph into her Mom, as I morph into her. 

I am walking because I want to catch my boys drinking for the first time, and dole out the consequences. 

I am walking because I want the time to fall in love again, and the time to do it right. 

I am walking so that I can tell my girlfriends that maybe it’s time to retire the knee socks and cowboy boots, at about 60. 

I am walking so that I can tell funny stories about my children, to their children.

I am walking because I have many more gardens to plant and vegetables to harvest. 

I am walking because I want the chance to look up at my boys. 

I am walking because I want to dance in my kitchen with old bones. 

I am walking because I want to compare grey hair and wrinkles with my sister and sit looking out at water and talk about a long time ago when I had cancer. 

I am walking for the women also fighting this battle – those who are sharing their stories and those who remain silent. 

I am walking for those who aren’t around to tell their stories, and for those they left behind. 

I am walking for the women who will share this story in the future, in the hope that their stories will be good ones. 

I am walking because I can. 

 

Walking it off

Prepping for the next phase of this trip has been interesting to say the least. A friend remarked yesterday that the emotions couldn’t possibly be simple, that they must be complex and that in some ways finishing chemo has to make for some complicated processing and some purposeful self-talk. 

Correct. One would think it would be cause only for celebration, that there couldn’t possibly be part of me that would NOT want chemo to end.

Not so. Of course I’m happy to be done with those sessions, and I am looking forward to NOT going to the hospital to get hooked up this coming Tuesday.

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(I have a collection of Pondering Pool cards – came across this one just this week and had to laugh.)

That said, it also means that there is no longer a drug racing around in my body killing off any nasty hangers-on. Scary. At no point has anyone offered to check, or to scan me to see if there’s anything left that could cause damage. The scans that terrified me at the beginning of my treatment are now tests for which I long. I want someone to tell me there’s no sign of anything happening. I want someone to tell me it’s all going to be okay. Although I’m rejoicing in every little downy hair I see coming in and I am really looking forward to being able to leave my house without ‘painting on my face’, the thought of finishing treatment fills me with dread a little bit, because there’s part of me that takes much solace in the fact that every two weeks action was being taken, and that every day for the next five weeks or so, more action will be taken to make sure that this cancer is eradicated from my body. After that, …. I wait, and I guess I take a bit of a leap of faith and trust that all of this has been worth it. 

In the meantime, I’ve been trying to get back into my own skin again, feel like myself, reconnect with my physical self and walk off some of this stress. Last week I reactivated my GPS app on my phone and clocked the kilometres I walked, About 35km got logged into my phone last week, which makes me feel stronger and kind of like I’m putting distance between me and this disease. There is a certain beauty to leaving chemotherapy behind and walking toward the rest of my life. 

Next stop, radiation!