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.

Fascia, passages and epiphanies (Or, I didn’t want to bite my therapist’s hand off today!)

So I’m back on track with physiotherapy, due to a rather irritating combination of lymphedema and some ulnar nerve compression. Since last year, my therapist has been working on getting my fascia moving again. Five surgeries on the left side of my body have left me feeling stuck, a feeling that is very difficult to explain. Needless to say, the skin on the left side of my torso moved about as much as the veneer on the dining room table in front of me about a year ago. Before walking into my first physio appointment I had kind of landed in a very accepting/complacent/resigned place. I just figured I would always hurt. That this was simply the new me, and there was not much to be done about it.

I’ll never forget my first appointment with the therapist affectionately referred to as ‘The Body Whisperer’. After respectfully asking all sorts of assurances from me about what he was going to have to do in order to properly assess me, he placed his hands on my stomach. Knew, through a gown, that I had had C-sections. That the right side was tighter than the left (which makes sense because although you’d think the surgeon would follow the scar made the first time around in an emergency section on round two, this isn’t a given, and sometimes you end up with a fork-shaped scar instead of a nice straight line). I was rather impressed at this point, and realized my body was being read. I trusted him immediately. So you can imagine the relief I felt when he put his hands on my chest and said ‘Oh, you’re so stuck.’ YES. (Inner voice yelling THANK YOU. PLEASE HELP., tears rolling down the sides of my face because I realized someone might actually be able to do something.)

Over the next few months, I gradually went from using door frames to ease the pain between my shoulder blades and rolling tennis balls under my back laying on the floor to realizing that I hadn’t pushed back against a door frame in a couple of days. A week. Things were loosening up.

Then summer happened. And, well, I really like summer. So physio got put on hold, and road trips were had. Lots of them. And flights were taken. Many of them – milk runs and all. Also, a pretty spectacular sunburn was had as a result of some very poor judgement at a water park in Maine.

Word to the wise: if you are at risk of lymphedema, and you get a sunburn, and it blisters, do NOT pop said blisters, no matter how compelling they may seem. Do NOT mess with that fluid balance and then hop on three short term flights back-to-back. Because believe me. You don’t want to be stuck wearing a compression sleeve, or better yet a compression sleeve combined with an isotoner compression glove. That’s just too much beige. Trust me. I know.

I know. Stop. It's too sexy. I can't seem to find the glove. I may have (purposely) misplaced it.

I know. Stop. It’s too sexy. I can’t seem to find the glove. I may have (purposely) misplaced it.

So, back to physio. When the discomfort in my forearm got too harsh to ignore, and my arm started to visibly swell, and feel hard to the touch, I went in to get checked out. You remember – that ‘is it infection, a blood clot, cancer or lymphedema?’ appointment. It turns out it’s not as simple as lymphedema. Basically things aren’t flowing properly because of a combination of reasons, one of which is that the space between my shoulder and my ribcage is considerably smaller than it is on the right side, and space needs to be made. I’ve been walking around like a crazy person with a question for weeks now, hand straight up in the air, applying pressure to a specific spot on my elbow in order to feel the reward of pins and needles in my hand and release some of the pressure in my hand and arm. There is also a painful load of scar tissue around my lymph node removal incision site that is hindering flow.

This area has always been particularly sensitive. My body slams into fight mode every time my physio’s hands go anywhere near my armpit. I prepare myself mentally for the exercises that require this before I go into his office, and still I have flinched, startled, jumped, convinced myself to stay on the table rather than jumping off or better yet fought-off-urges-to-snarl-and-bite-his-hand-off. It took me months to be able to graze my own hand over that scar. I guess 17 lymph nodes is a lot of lymph nodes.

Well. Something really interesting happened today, or I guess it would be more appropriate to say something really interesting didn’t happen today. It was a very quiet session – usually we geek out and talk French grammar together – I commented on the vibe around the place when I went into the office. So when I spoke it broke the silence.

Me: Well. That was interesting. (Whoa…wait – what??)

Him: What was interesting?

Me: That was the first time since the first time I came to you that I didn’t have to fight off the urge to (see above). I usually do. (!!)

He answered by telling me he felt a change too, like there is movement happening. My right side then responded by buzzing a little, toe to shoulder, as if in response to my left side finally sending something its way.

It’s coming. I am less stuck. Some passages are opening up again.

All the yay!

A special place I visited a few weeks ago. Moving water must encourage my body to open up. I'd best keep up my river walking!

A special place I revisited a few weeks ago. Moving water must encourage my body to open up. I’d best keep up my river walking!

Varmin, vacuuming and vexations (Or, the week I did five thousand loads of laundry.)

My blood just ran cold for a moment. The bag. I forgot to change the bag. Ooooh. All the dread.

It all began when I noticed my youngest doing a similar dance to that of a flea-infested dog who’s just eaten chocolate. While my inner dialogue was finding god and begging whoever was listening to please, please, please not let me find what I thought I was going to find, my outer mama was doing the STOP EVERYTHING thing. Get a flashlight. And Come. Here.

Ah, shit. With the same urgency one would employ whilst dealing with the impending apocalypse, my focus narrowed. A couple of phone calls, texts and one very manic trip to the drug store later, both of my boys were shorn and very much free of the unspeakable bugs I spent far too much time studiously combing out of eldest’s head. Divide and conquer was the only way to deal with this particular crisis. One at Dad’s, one at Mom’s. The big boy wasn’t super cool with having his head shorn. And so, although I am fairly confident I could have lived out the rest of my days without it, I now have a deep and profound understanding of the expressions ‘nitpick’ and ‘Go through it with a fine-toothed comb’. Oh yes. That little clicking sound the comb made every time it encountered one of these little passengers is imprinted in my memory now, I’ll have you know. Right up there with the desperate statement made by my eldest during said nit-picking session: ‘Umm…Mom? I think there’s one on my face. ….Yep.’

Inner voice: ‘$%$##$ hell. ohmygodohchristhelpmeplease.’

Calm, outer mama-voice: You know what honey? I really think it would be best for you just to shave it. Really. Okay? Okay.

Itchy yet? Yep. I get it.

Both kids shorn. Then there’s time to really freak out. Then it’s time to head down to the local laundromat, where I must say there really is a hugely disproportionate amount of ass-crack compared to pretty much everywhere else I’ve ever been (and not the pretty kind), and utter something utterly foreign to me: ‘I’d like 40 dollars in change please.’

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I have never cleaned with such gusto in my life. I thought of keeping a running list of how many times I washed-the-bedding-cleaned-the-pillows-vacuumed-the-mattresses-stripped-the-beds-laundered-clothing-sanitized-towels-clorox-wiped-every-surface, but I was too busy checking my own scalp in the mirror. It’s been two weeks, and I’m still carefully combing through my own hair with that magic purple comb at least once a day. Today when I spied a piece of lint on the box-spring while I was vacuuming it (yep, still doing it) I actually let the mattress fall on me while I pounced on it with WHAT ARE YOU???? screaming inside my very fragile brain. A friend of mine likes to scratch his head while he story-tells. That’s been banned. Any head-scratching performed in my presence from this day forward will result in a thorough going-over by me, seasoned nit-picker. You’ve been warned.

So that was enough crazy for one week, right? Nah. Not even a week later, Child #1 is spied head-down, listless and very much not hungry during the lunch hour by the supervisor. One mama-hand to the forehead sends a chill down my spine. He’s hot. Like drop-everything hot. Sick. One day later, I’m down. The next, little man is feeling pretty crappy as well. There is a curse upon our house.

Pull out all the stops. No. More. Bugs.

Pull out all the stops. No. More. Bugs.

So, half a bottle of Adult extra-strength Tylenol, one box of Emergen-C, two boxes of tea, half a jar of honey, several good doses of Nyquil, one bag of Epsom salts, 21 loads of laundry, one humiliating visit to the medical clinic (because we had to wear masks, not because of Isaac’s delirious fever-induced hallucinations of people racing all around him), …

Nobody wants to be this guy in the waiting room.

Nobody wants to be this guy in the waiting room.

Oh well. We owned it.

Oh well. We owned it.

countless coughing jags – two of which ended with us laying on the floor, daily vitamins, and 12 combined lost pounds, I think we are finally coming out of it. Little one back to school yesterday, only to just about put me over the edge by jumping, screaming, out of his seat at dinner last night looking hysterical – I couldn’t tell whether he was laughing or crying.

Me: WHAT HAPPENED???

Him: I BIT MY FINGER!!! (Crying)

Him: I THOUGHT IT WAS MEAT!!! (Hysterical laughter mixed with tears)

Me: I give up. Well. At least you’re eating. I’ll get a bandaid.

So, half of my sick days for the year are gone, and it’s still September. But hey – it’s not cancer, right? Could be worse!

Pencils, passports and paranoia (Or, I bought a heavy-duty pencil sharpener the other day.)

The catalyst.

The catalyst.

I bought a heavy-duty pencil sharpener the other day. This may seem like an act that should be ranked right up there with I grabbed a newspaper, or I watered the plants, but for me it was far from trivial. There were four to choose from, ranking from the very-cheap-may-last-the-year version to the mediocre battery-operated type, and then there were two heavy-duty sharpeners, with bigger price tags but which came equipped with heavy cords and big promises. Mine promises to last beyond my far-off retirement, in high-traffic areas such as classrooms or large offices. I considered it an investment. And a huge leap of faith.

Some of you are no doubt scratching your heads at my chatter about pencil sharpeners, and others, who have been forced to see life in a way that forces them to hesitate to plan for their futures, may be getting it.

I haven’t renewed my license for more than one year at a time since I got sick. When I renewed my passport, I went for the five year renewal rather than the ten, because, well – that part’s probably pretty obvious. When someone tells you you have cancer, and when that delicious luxury of being able to blissfully utter phrases like ‘when I retire’, or ‘in ten years or so’ is removed, you stop making assumptions about longevity. And, if you’re like me, you stop daring to look forward to things that are really far off. You say things like ‘if I get to get old’ instead of ‘when I’m older’. And, if you’re like me, when you go to your oncology appointments and they tell you everything looks good and your blood work is great and they’ll see you in three months, there is still a small, slightly irrational red-faced Tanya inside your head shaking the lovely pink-shirt-sporting doctor and yelling I DON’T BELIEVE YOU. Because you’ve had the bad appointment too. You want proof.

On my last appointment, which very nearly coincided with my two years past-chemo anniversary, I brought in a little sticky paper that my lymphedema specialist (so yeah. That’s happening.) had written on. Four possible causes for my very sore, slightly swollen arm. This is kind of a synopsis of how that appointment went.

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The physiotherapist announced that she was just going to jot a few things down for me to show my oncologist at my appointment.

  1. Cellulitis: Bad sunburn, Very high anxiety/stress, lots of massage in left armpit.
  2. Blood clot: Venous doppler?
  3. “It could be your cancer coming back. But I’m not going to write that down.”
  4. *Lymphedema: add sleeve.

Wait – what??

So I hyperventilated my way through the two hours leading up to my oncology appointment with a couple of friends and presented that lovely little sticky to my oncologist, who lifted my arm up, showed me how the veins in my hand flattened when it was held above my head and filled when I put my arm back down again, assuring me that I wasn’t going to drop dead of a blood clot letting loose and filling my lungs in the next ten seconds. Whew. Well then what about this cancer thing?? (If I could somehow make the words build into a panic-filled-hysterical crescendo for you, I would.)

Poke. Prod. poke-prod. Inhale. Exhale. WELL???

“I don’t feel anything going on in there. You’re fine. There’s nothing happening. Go have fun.”

So this is when I peer into his eyes to see if he’s trying to trick me. I make him double-check my blood work. It’s when I get a hug from my friend who’s just seen me through this appointment, and my whole body exhales, my shoulders come down about two inches, and I desperately want a burger. (That’s traditionally how these appointments go. I panic and have no appetite leading up to them, and then generally by the time I open the exit door to the parking lot of the hospital, I am ravenous and want a burger.)

Post-appointment relief.

Post-appointment relief.

So back to the pencil sharpener. Believing that I’m going to be around long enough to really get my money’s worth out of this pencil sharpener is a leap of faith. It’s not, to be clear, about the sharpener. I mean it’s pretty and everything, but it’s not that that excites me. It’s the hope. The tentative belief. It’s something I’ve decided to do more often. When I renew my licence plates again, which I am usually very bad at, it will be for two years, not one. And when I renew my passport, I am going to take the ten year option, dammit.

Because it’s nice to have something to look forward to.

Strangers, space and stories (or, how I finally made some room)

Sometimes life places people in your path at exactly the right moment, in exactly the right place. A stranger who wants to talk on a plane, or a stranger who’s okay with silence. Sometimes the universe is kind that way. We all know that sometimes that’s not the way it goes, and we deal with those days too.

I was at the market a few weeks ago, picking up some gratitude gifts for the people who would be putting us up on our road trip. I picked up a Jamaican meat patty downstairs, made short work of it, and headed upstairs to say hello to a friend whose art has found more than one home in my house. En route, I passed a man I have known, but not known, since we were kids. 13, to be exact, although he lied about his age way back when. I’ve had pictures of that 13 year old in an album for – well, since I was 13. It never really made sense to me that we somehow made an unspoken agreement that we didn’t know each other. When I moved here, and our paths crossed over the years, and they have often crossed, we never spoke about having met each other. I thought he had forgotten. It was a Grade 8 class trip, and there were many people there. Easy to get lost in the shuffle of memory files.

Well, for whatever reason, I stopped in my tracks this particular Saturday morning, and backtracked. Decided I needed another beef patty. Called him by name, tentatively. Put out a bridge. And in that moment, in a flurry of handshakes, hugs, I’m sorries, and laughter, he crossed the bridge, and we both gained a friend.

Why did it take almost 30 years? How many other misconceptions have hindered relationships? How many of us walk around hogtied by stories we tell ourselves, or that others have told us?

We went for a walk in the woods yesterday, one of those transformative, energizing walks in the woods that creates all sorts of space in one’s head. I’ve been really trying to find my hook for writing for the past couple of weeks and it hasn’t come, until one of many moments that stopped me in my tracks during our walk. I was telling him a story from my past during our walk. A story about regret, a story that still makes me feel shame, a story about treating a stranger poorly. My new friend stopped me. Said ‘Hey. I don’t want you to tell that story again. You don’t need to. It can stay here. And that’s okay.’

Whew. Well, let’s take that lesson and splash it all over my life, shall we? There are so many stories that don’t need to be told again. Stories that don’t make anything richer with their telling, stories that don’t do anything but bring pain up fresh again. Some stories just need to be put away.

And then he did this, after a good feed of leftover Indian food:

Everything in its place.

Everything in its place.

And there it was. Space created. Sure. It’s a napkin and a jewelry bag, probably with a bit of curry on it somewhere. But it was a powerful image. Put those stories in here, he said. That small little space is where they can live. You, though. You live out here. Look at all that room.

Yeah. I think that’s where I’ll live.

I can’t write because I have too much to say.

That is all.

I know. That’s a bit of a cop-out.

I know. Usually I shoot from the hip.

Right now, I’d be aiming. And I don’t want to do that.

So stay tuned. I had a great trip, and I’m about to have another one. I just can’t clear out enough space to write about them yet. Partly because I’m too busy doing the trips. Partly because my mind is cluttered.

I’m working on it.

T.