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!

Decisions, desensitization and desert-island drugs

Little man, on recovery day one. So tired. Made it to the dining room table, and not much further. I get it now.

Little man, on recovery day one. So tired. Made it to the dining room table, and not much further. I get it now.

My son was ill all last week. Everything hurt, and he sounded like a frightened seal when he coughed. I have been watching my students drop like flies with this killer flu they gave all sorts of creative names, including ‘bone flu’, which I thought sounded very exotic and suitably frightening. I tried getting him to go to school one day last week because I didn’t want to miss work (my eldest son found this very confusing) and when he cried his way into the parking lot yelling MY BELLY HURTS AGAIN I knew I had to park him in the office, arrange for a supply teacher and take him home. Battle lost. All week I marvelled to people at work about how I haven’t been sick since chemo – not a sniffle – and somewhere in the back of my mind I knew I should be knocking on something-or-other to make sure I wasn’t jinxing my good fortune. I didn’t.

Guess who’s sick?

Yep. And as refreshing it is to be just-plain-old-sick instead of glued to the couch recovering from chemo, radiation, or surgery, It kind of sucks to be missing work right in what is supposed to be my transition back to full time. Thank goodness for Advil cold and sinus, my desert-island-drug of choice, and a house full of quiet that I can sleep in.

And hey, why not catch everyone up on my latest decision?

I finally saw the local surgeon for my second consult. I meant to go into the appointment with my decision firmly made, but the truth is I waffled back and forth all month wrestling with the pros and the cons of both the Diep-flap surgery and the Latissimus Dorsi flap surgery. The fact that I had gained almost 15 lbs in hopes of having the Diep flap surgery done, and was still told that an implant would likely be necessary anyway was starting to lean me toward the back flap, but it wasn’t until I sat down with the doctor and he started talking to me about the possibility of blood supply microsurgery being risky because it was possible that there could be damage done to my blood vessels because of radiation that I landed firmly on my decision. I just can’t take the risk of another failed surgery. I can’t face it for several reasons, the biggest of which being I simply don’t think I’d be okay after another reconstruction fail. Latissimus Dorsi it is.

So. I walked out of his office, with his very reassuring failure rate of 0% in mind, and a whole lot of space created in my head, which had been very pre-occupied with all of that waffling back and forth.

When I was diagnosed, I said to my mother and sister that we would all get a day or two of mourning, of tears, and then I needed my team. And I sure got it. In spades. That team carried me through that entire year plus of surgeries, chemotherapy, radiation, and the aftermath of a reconstruction fail.

Tanya's 'Tigers' - it's funny; I was going through a bag of clothing my sister was going to give away a couple of weeks ago, and this t-shirt was amongst several gems I snagged. She picked it up, looked at me and said 'You don't want that.' And I answered 'No. I don't'. And away it went.

Tanya’s ‘Tigers’ – it’s funny; I was going through a bag of clothing my sister was going to give away a couple of weeks ago, and this t-shirt was amongst several gems I snagged. She picked it up, looked at me and said ‘You don’t want that.’ And I answered ‘No. I don’t’. And away it went.

Now, I find, I need to build a different sort of team to pull me through this next phase of healing. And making my decision to stay here and have the local surgeon do my reconstruction surgery was a big part of that. I trust him. My mother trusts him. I have spoken to one of his patients who speaks very highly of his care. I know other people who have dealt with him and have spoken highly of him. He thinks what I went through in Winnipeg was barbaric. This makes me like him even more. I don’t think he’d cut me open on a table hidden from the hallway of an outpatient clinic by only a curtain. I know that if anything went wrong after surgery he wouldn’t leave me to residents for care. I need to go into surgery trusting this man. He is bracing me mentally, physically and emotionally for the biggest surgery done at our regional hospital. It will be 8-10 hours long, and the recovery will be about three months. It’s a big deal, and there will be no trivializing any of it with him. I appreciate that.

Next on my team is the clinical psychologist I just started to see, who has confirmed the PTSD diagnosis and feels strongly that EMDR (Eye Movement Desensitization and Reprocessing) therapy will do wonders for me. Used on police officers and soldiers with much success, it won’t make me forget what happened. But it will hopefully allow me to put it in the past, where it belongs. I have told him I don’t think about it consciously that often, but I need my body to forget, because I seem to be always crouched at the ready for the next hit. It’s good to know how normal this all seems to him, and to have someone give weight to what still seems like a very surreal experience to me.

Team member #3 – a physiotherapist in town that is known as ‘The Body Whisperer’ on my staff. On my first visit to him, without seeing my body, as I was covered in a sheet, he put his hands on my stomach and knew that I had had C-sections. He did some work on my fascia, and the next day, my incision sites, which have been scorching hot since my very first surgery, were cool to the touch. Yep. I’m a believer. I have been seeing him twice a week, and already I feel much more relaxed. That keen tension / pain between my shoulder blades that prompts me to push myself into door frames and jam tennis balls between my back and a wall to try to release some tension is significantly lessened. I told him I noticed the other day that I only aimed for one door frame, which I found amazing. I know he’ll get me ready for surgery, and I know he’ll be there to help me recover as well. I’m in good hands with him.

Walking again. Doing yoga again. Reconnecting with that part of me that's really been missing since I went back to work.

Walking again. Doing yoga again. Reconnecting with that part of me that’s really been missing since I went back to work.

And finally, Team member #4. Me. Now that I’ve made the decision regarding surgery, I can lose this weight. I can go back to doing the things I love so much. I did yoga every single day last week, and already I feel stronger and more like myself. I started tracking my exercise and food in an app called My fitness pal, which makes me feel purposeful and like I’m taking control of something, which I have very much needed. Things have been taken out of my hands so often in the past couple of years. It’s so good to turn to mindfulness and point myself toward solid ground rather than treading water and having no idea where to find land. I know it’s a big buzz word right now, but the practise of being in the here-and-now, and consciously trying to stay there and fully experience each moment – mindfulness – is really helping me right now. This book is now full of my usual sticky-note jot-notes, and one of my favourite analogies in it thus far is on rushing.

I like this book because every chapter is written by a different author. All sorts of interesting perspectives woven into a tapestry.

I like this book because every chapter is written by a different author. All sorts of interesting perspectives woven into a tapestry.

Rushing does not particularly have to do with how fast you are going. You can feel rushed while moving slowly, and you can be moving quickly and still be settled in your body. Learn to pay attention to this feeling of rushing. If you can, notice what thought or emotion has captured your attention. Then, just for a moment, stop and settle back into your body: feel your foot on the ground, feel the next step.” – Joseph Goldstein –

I guess that’s what I’m trying to do. Settle back into my body. Feel my feet on the ground. Take the next step.

Oh – and for a bit of levity, a friend of mine (in the above team photo with curly hair) brought me a sample of a product called Mixed Chicks, which kind of tames my frizz. It may seem trivial to you, but the freedom to sometimes wear my hair curly is pretty exciting for this girl!

This was my first attempt - and a pic I sent to my friend to say I didn't totally hate it!  Some people get a different colour, some people go grey, some go curly after chemo. I, obviously, went curly.

This was my first attempt – and a pic I sent to my friend to say I didn’t totally hate it! Some people get a different colour, some people go grey, some go curly after chemo. I, obviously, went curly.

Perfect timing! This little package just arrived at my door.

Perfect timing! This little package just arrived at my door.

Ready or not. (Or, the return of the teacher formerly known as Madame Gouthro)

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Ironically, Madame is allergic to apples. But maybe if she gives one a day to the students, the doctor will still stay away.

 

You can never go back. (I know this, and yet I have repeatedly made attempts to do so over the course of my life, never with any good result.) So when I say I am going back to work, well, it doesn’t mean what I think it means. Or what it’s supposed to mean. Or something.

Permission to go back to work. What it really means is permission to attempt to return to some sort of routine. To go back to a familiar place, be surrounded by familiar people, and perform a very familiar job, all as a person with whom I’m not yet really familiar. To leave sick behind, and try to be normal. Or, my favourite, get back to my old self. It means changing my purpose from healing (on a good day) or surviving (on a not-so-good day) to heading a classroom full of spirited, hormone-riddled students and helping them get through this school year and emerge better than they were at the start. These kids very much need for me to be okay. And I will be.

It’s just that when they crowd in for a hug, and say ‘T’es retournée!’ or You’re back!, they don’t necessarily know that it’s not entirely true. The Madame Gouthro they knew is changed. She’s never coming back. There’s a new one, but what’s strange is that I haven’t met her yet. I’ll meet the new Madame when the kids do, and we’ll have to figure it out together.

I practised sitting here today. I found myself holding my breath a lot. Tomorrow, I'll go in and practise breathing at that desk.

I practised sitting here today. I found myself holding my breath a lot. Tomorrow, I’ll go in and practise breathing at that desk.

I have spent time in her space every day this week, and I’ve started to try to make it just the way I think she’d like it. I’ve put out bowls of apples for the students (old Madame did that; they liked it.), cleaned out cupboards and drawers and organized resources for her. I brought a few talismans from home and put them on her desk, because I think she might need a few of these with her in the first few weeks. I’ve tried to choose natural fabrics and calm colours, and I’ve bought her some plants, because I know she’ll want as much green around her as possible. I still have a lot of work to do to get the room ready for her, but it will be done for Tuesday.

I found some great quotes to inspire both her and the students.

I found some great quotes to inspire both her and the students.

 

Twine, burlap and wood. And green. Lots of green.

Twine, burlap and wood. And green. Lots of green.

And then, Wednesday morning, after I leave my house and turn the key in my lock and after I drive to work, after I put my lunch in the fridge, check my mailbox and head upstairs, only when I turn the knob to my classroom and meet all those expectant smiles, will I meet Madame Gouthro.

I think she’ll be okay.

Fatalism, fed-upedness and fatigue (Or, trying to find my way out of a funk)

I remember a day not long after diagnosis when I was driving away from the hospital, away from the Cancer Centre, where I had been at one of a gazillion appointments. The focus was, of course, how to keep me alive – kind of the point of cancer treatment. When I went to turn left onto one of the main arteries a car came out of nowhere and I narrowly missed a massive collision. I remember swerving, slamming on the brakes, and immediately pulling over because my hands were shaking too much to hold the wheel. And I remember falling apart. Feeling like maybe it didn’t matter what I did. Maybe my ticket was, simply, ‘up’. Maybe it was all out of my hands. That everything I was doing to treat my cancer was going to be futile anyway, because this was all some bigger-than-me cosmic joke. This thought left me in one of those can’t-breathe-god-I-wish-I-wasn’t-publicly-crying places that no one likes. You know the ones – where you want to acquire some sort of sparkly-red-shoe power that will allow you to click your heels together and disappear onto the floor of the corner of your kitchen, because that’s your safe place and no one will watch you get messy with snot and tears. 

I pulled it together pretty quickly that day and managed to be on my way home, physically shaking my head to banish that thought and any more of its nature from my brain. I have continued to use this head-shaking strategy over the course of the last year, moving steadily forward and often employing the tactic of purposeful denial to shelter myself from that dark kind of fatalism.
It’s come back as of late. Since this reconstruction fail, I seem to be spiralling a bit. I’m conscious of it. I’m trying to stop it from happening. I’m talking it out. I’m trying to get out of my house. I’m finding the funny in all of this, when I can. But complications in healing are frustrating me. It would appear that skin that has been operated, radiated, stretched to transparency and then cut into three times in two months isn’t super fantastic at healing.
And so I am stuck. Stuck in a place where I cannot move forward because every time I look in the mirror I see ‘freshly-operated’. Stitches still in, after over 3 weeks. Still limiting activity. Still not getting outside and walking because, despite what the surgeons hoped, I wasn’t all better in a week and the go-ahead to ‘resume normal activities’ has been revoked. I am cranky. The combination of next-to-no sleep and never-ending-winter (I know I’m not alone here!) and physical discomfort and loss have me finding it difficult to be around people a lot. Overwhelmed really easily by noise and movement and crowds. Unsure about entering into conversation with anyone about how I’m doing, because I’m not okay. Sometimes I’m up enough to make it funny – crack jokes about how I have to fatten up for surgery, or talk about the serious (SERIOUSLY!) need for some sexy post-mastectomy lingerie and swimwear in this city / country / on this continent. (I am currently looking at having mastectomy bikinis sent from the UK.) (There’s a whole other topic for a blog. I’ll get back to it. ) Other times, I’m not so funny. Other times, I get half a sentence out and stop talking because if I continue, I will cry. And nobody likes a cry-baby. Myself included.
So. This afternoon, I sat down and tried to think about what usually helps me put things into perspective. Unfortunately, or fortunately, I think about other people’s ‘shit’. And by ‘shit’, to be clear, I mean the difficulties that other people are facing in their lives right now. The kinds of things that other people are facing that are, for them, as difficult as this is for me, because for them their trials may be the worst they have faced to date. It didn’t take me long to realize that I’m in good company. Without looking very far at all, there are people dealing with fresh diagnoses, juggling fear and children and uncertainty. There are mothers worrying about children, about potential horrors that they may face. There are daughters dealing with the loss of mothers, missing daily interactions in ways I can’t even stomach imagining. There are friends whose parents are ill, and who are too far away from them to help in the way they need to. Brothers, separated from sisters by distance and feeling like they’re in the wrong place. Friends who have found love and are frustrated by geography and circumstance. Marriages that are silent and empty. Marriages that are full of too much noise and anger. Friends learning that they must stop doing what they love the most in order to be healthy. Friends that need to be medicated in order to do what they love. Others that live in constant fear that their world will come crumbling down around them.
My companion likes to remind me that I’m not alone. I know that this isn’t what he means. But that phrase carries much weight.
And in thinking about that, and about the loads that others are carrying around with them, somehow my own doesn’t seem quite so heavy. So I’m going to send out a whole pile of really, really good vibes to those who need them, and open myself up to the ones I know are coming my way, and keep breathing. 

 

Tape, tattoos and tapestry (Or, I took off my bandages today.)

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There’s been a lot of talk about ‘selfies’ lately. The word sparks a great deal of debate. Some feel that they’re pretentious, or egotistical, and that taking a photo of oneself automatically makes you seem self-obsessed. Some would condemn selfie-takers as narcissistic. Others acknowledge the power of being able to take a good picture of oneself. To take a shot that shows you to the world in a way that you want to be seen, rather than being caught in a mushy-faced-mid-confusing-conversation-at-a-coffee-table candid shot that someone immediately posts on Facebook for all to see. 

I recently read an article floating around online called Under the Red Dress. It began with a photo of a drop-dead gorgeous, glammed up blond woman wearing a fabulous red dress – I paid attention, having a bit of a weakness for the colour (even post-red-devil). There was a series of photos that followed – full of courage and shock and relief – that revealed the woman under the dress. Her scars. No photoshop, no gentle lighting, just a real hard look at a body that has seen some tough times. I admired her. Found myself wondering if I had the courage to join the ‘red dress’ movement. I don’t think I do, but I decided I loved the concept. 

I took off my bandages today. Carefully pealing off steri-strip after steri-strip along my newest scars took some prep, it must be said. For the past few days I’ve been tentatively removing one or two, getting a little glimpse of what my body’s going to look like. Today, the day before my follow-up appointment, I decided to get rid of the rest of the tape. Did so, had a shower and then did what we’ve all done at some point in our lives. Stood in front of the mirror in the cold light of day and took a look. There’s a story to be told, I realized, on all of our bodies. Scars help tell that story. 

Scars on my knee tell the story of me falling into gravel on a run whilst attempting a flippant wave at a student. That was a good one. Two small scars, one on either hip, show where fat-grafting was done recently. C-section scars, both earned through the emergency life-saving births of my sons. The tattoo full of its own story just above them. PICC line, drains, and lymph node removal have all left their mark on my body as well. These scars tell the story of saving my life. A small white line on my forehead tells the story of running into the corner of a wall as a small child, running to greet my ‘Matante’. A few stitches there. A deep line on my right hand, reminding me not to put a hand on a hot element. Learned that lesson. Countless other little nicks and nubs whose stories are long forgotten. The removal of today’s bandages revealed the newest scars, ironically there as evidence of my rebuild. 

It’s a scary time, this naked mirror time. It’s scary for all of us, I think. We wonder how other people will see us. We can be hyper critical of ourselves, looking for flaws rather than beauty. We can forget about the stories our body tells. 

I just happen to have a few stories. 

Done! (Or, why Marvin Gaye was the perfect music for my last spa date)

And so it was.

Mammogram. Breast ultrasound. Wait.

Breast MRI. Wait.

Biopsy. Wait.

Panic. No more waiting. Bone scan-heart scan-chest x-ray-abdominal ultrasound-Transvaginal ultrasound (as fun as it sounds). Bilateral mastectomy-removal-of-17-lymph-nodes-partial-reconstruction. Heal. Plan chemo. PICC line insertion. Chest x-ray. 8 infusions of push-me-to-my-limit toxic chemicals over 16 weeks. Plan radiation. Walkwalkwalkwalk. 6 weeks and 28 radiation treatments.

#28 was today.

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There is a crispy square on my shoulder, hard to see in the above photo but one of the lesser-affected areas of treatment.

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The hardest-hit is under the arm, thus the frequent  ‘Cleopatra’ pose, giving it some air. This too shall pass.

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(Today, laughing with a good friend who assured me that ‘of course it looks weird’ when I inquired.)

Never again will I hear ‘Chin distance….17.7? Good. Vertical shift….5.5?  Okay. Horizontal shift…..8.7 left?  Yep. Sup tattoo…9.9?  Good.

Never, I pray to the gods, will I hear the whining and whirring and clanging of that radiation machine.

As scary the end of treatment is, I am so looking forward to this next phase, wherein I heal and let my body forget all of which it is all too conscious right now.

I am starting to recognize the person I see when I look in the mirror. I am getting used to comments such as ‘Hey! Your hair is getting…taller?’.

A few days ago there was a video circulated around of a woman facing a double mastectomy who chose to spend the ten minutes prior to her surgery having a dance party in the operating room with the operating staff. It has left me with dancing on my mind since. When I dance I can shake just about any worry off. Dancing connects us with our bodies in a primal way, communicates sorrow, joy, sex, longing, humour, rage, all of it, if we let it. In my mind there is no such thing as a bad dancer.

Today while waiting for my final treatment to begin, a friend who came down to provide support along with my mother informed me that there was a dancehall for sale close to the city, something I found fascinating and totally appealing. I went into treatment with dreams of opening a fabulous restaurant in the woods where people would come to eat good food, drink good wine and dance and sauna. Those who know me know I love to dance.

I actually laughed out loud when the girls in the radiation department cranked the music up for me, as they do at my request, and the song filling the room for my last treatment was none other than Sexual Healing, which is always a great go-to dance tune. And so, with a grin on my face, I closed my eyes and imagined myself lifting out of my body for that last punishing treatment and dancing around that room with wild, albeit somewhat-crispy, abandon.

I am done. 8 months later, this part of the journey is complete.

Bring on the healing.