Guest Post: Another Perspective (Or, what it means to be the sister.)

Tanya and Monique, sometime in the 90s.

Tanya and Monique, sometime in the 90s.

Breasts, Biopsies, and “What Ifs” (Or, Why all Hospitals Ought to Have Bars in Them)

My sister was waiting for biopsy results, this I was aware of. Aware, in the sense that I knew it was happening but didn’t think for a second that her results would indicate cancer.

I am 37 years old. I am in what I like to call “the sweet spot”. I have three healthy, happy children, and two healthy, happy parents. I am both blissfully and painfully aware of this reality. So aware, that I find myself stopping (often), to take it all in.

“Remember this,” I tell myself.

“Take another picture,” I tell myself.

The underlying truth has never escaped me – it won’t be like THIS forever.

I worry about my parents. What if my dad doesn’t make it home from his next hunting trip? What if my mom’s arthritis prevents her from planning another exotic vacation? What if they ARE actually going deaf?

I worry about my children. What if this pregnancy doesn’t go well? What if he rolls onto his stomach during the night? What if the car seat straps aren’t snug enough? What if the car seat straps are too snug? What if he never learns to talk? What if he talks like THIS at school?

Cancer carries with it many questions. And unfortunately ALL of those questions begin with the dreaded, “what if…”

“What if she loses her breasts?”

“What if she keeps her breasts?”

“What if she needs chemo?”

“What if it’s genetic?”

“What if I have it?”

“What if we ALL have it!?”

“What if I don’t know the right things to say?”

“What if her boys are not ok?”

“What if it’s in the lymph nodes?

“What if it spreads?”

“What if she…”

My sister. My sibling. The one who shared her bed with me, and marked her territory in our bedroom with rolls of masking tape. The one who rescued me from ponds of algae, and stole my favorite sweaters. I didn’t have worry about HER because well, she was in the sweet spot with me!

Monique and Tanya, in simpler times.

Monique and Tanya, in simpler times.

Monique and Tanya, in not-so-simple times.

Monique and Tanya, in not-so-simple times.

And there we found ourselves, in the middle of the sweet spot, huddled together in a hospital bed waiting for a double mastectomy. I will spare you the details but the day went something like this: strip, poke, inject, wait, transfer, sedate (thank god), surgery, biopsy, more surgery, wait. I don’t spare the details because they are foggy. I spare them because I don’t have the language to describe any of it. What I will say is this: accompanying my sister to that hospital was an honour. It was also the most difficult day of my life – by a landslide. How do you tell a woman who just lost her breasts that the cancer has spread to her lymph nodes? How do you tell her mother?

Tanya handled this news like a tiger. I, on the other hand, encouraged her to sleep so that she wouldn’t see me sobbing at the foot of her bed. ALL I could think was, “what if…”

As Tanya nears the end of her treatment, a lot of my “what ifs…” have been answered:

She lost her breasts (it’s ok, she’ll get new ones).

She survived chemo.

If it’s genetic I’ll lose my breasts (it’s ok, I’ll get new ones).

I have said some right things and some wrong things (but she still seems to think I’m ok).

Her boys are AMAZING.

They removed, poisoned and radiated her lymph nodes so I can’t imagine anything wanting to grow there.

And, a few of my “what ifs…” cannot be answered. Not today anyway. Yet, somehow I have developed this thing called faith. Faith in what? I’m not sure. Some combination of confidence in the care she’s been given, in modern medicine, and in karma just makes these answers feel factual:

It’s just not going to spread.

She will be ok.

Monique (Or, the sister.)

Napping makes my eyelashes grow.

Tomorrow marks the halfway point in my radiation treatment, and although it’s been pretty uneventful to date there is a lot to be said about the kind of tired I get about an hour and a half after treatment, and for the value of a nap.

Yesterday when I pulled my slow body up to my room for my daily rest and stretched out, I found myself looking around my room and making mental note of what I was seeing – the shaft of light coming through my curtains and illuminating my bed, the sunlight coming through dark red curtains, a spider on my ceiling, the pile of (folded!) laundry on my dresser, my freckled dog sprawled out beside me because she knows the routine, two boys’ socks abandoned on the bathroom floor, etc, etc, etc, and then actually laughed out loud because I realized that I had not, at any point in those mental note-makings, moved my head. My eyes had done the work, the rest of my body totally incapable of movement and bordering on semi-paralyzed. I remember consciously thinking that spider could probably drop down and dangle right over my nose and I wouldn’t be able to move. 

So. Tired. 

I lay like this, daily, for about an hour. Sometimes I sleep, sometimes I doze, sometimes I can actually feel my body buzzing in its attempt to heal itself from the day’s treatments. Eventually, at some point, I open my eyes and feel normal again, stand up and resume my day. I feel refreshed even, and thankful that all it took was an hour. 

Other things are quietly happening while I sleep. Every day when I wake up, I see a little more ‘eyebrow stubble’. The halo of fuzz on my head is growing by the day. My nails have almost grown their chemo ridges out, and this morning, when I swiped my mascara across my hand-drawn lash line, it actually caught some tiny lashes that weren’t there yesterday. Yay. Image

 

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. 

 

Beginning radiation (or, how I intend to pass five weeks at the ‘spa’)

 The wait period between chemo and radiation proved to be a very strange time for me, and I think for many people who have been in and out of this journey with me thus far. At the beginning, as I have carefully chronicled and for which I have been eternally grateful, my team, having dubbed themselves Tigers, rallied and they were constantly there, circling, sniffing around, making sure I was good, and healthy, and fed, and taking care of any superfluous details for which I simply did not have the energy. Once summer hit, and the beaches beckoned and holidays began, many of them went off to do their own thing, and I have already talked about how difficult a time that was for me. Then summer came to an end, and people began to trickle back in, back-to-school-ing-and-harvesting-and-pickling-and-canning-and-jamming, which I was able to be part of and, for some projects, even take the lead. This ensured me the time with my friends (read: Tigers) on which I have truly come to rely. This is now coming to a close, and the frenzied rush of support I had at the beginning and post-surgery has settled right down. I handled chemo well. Radiation will be a breeze. I think that’s what people assume, when I’m out walking, cooking up a storm, and keeping myself as busy as possible so that I don’t have to think about Cancer. 

I know that type of support is like running a marathon. When the illness is not yours, the endurance part of that support run is nearly impossible. It’s difficult. I get it. If I could opt out of it, I would too. 

I have likened it to a few things, this gradual disappearance of constant calls. I guess the way I would process it would be this: 

In our schools one of the models of instruction that we use, with great success, is called the Gradual Release of Responsibility. The idea is that when kids are struggling, or even when they’re not, we can achieve the most success by easing them into independence. By first telling them about a task, then sitting beside them and completing the task with them, explaining and encouraging as we go. Then you get to a stage where the student does the majority of the work, and you’re there to encourage and question them if they go off the path they’re meant to walk in whatever problem in which they’re immersed. Finally, once you’re confident that the student is confident enough to go forward and do the work independently, you back up a bit, resist every teacher-temptation-to-take-over, and let them come to the realization that they can do it on their own. And when they can, it’s a beautiful thing, for both you and the student. Watching that light go on in a student’s face when they realize that they have done something difficult on their own makes every horrific day (and these are many, believe you me) of teaching worthwhile. 

There have been some lessons I have learned about people who just aren’t cut out for the difficult stuff. They flit in and out, opting in for the easy times and running straight for the hills when times are tough. What I have learned is that those people opt out of difficult situations across the board – not just with me. The people who have chosen to be part of this journey with me and stay it out with me, even when things are difficult, choose those difficult moments to stay close, and lend support. When things get easier, as they are beginning to do, those people then take those moments to back off, let me show myself that I am strong enough to do this alone, and remain steadily there all the same, while they take the opportunity to recharge.  There are others, who, strangely enough, want little to do with the good times or the everyday, but who surprisingly are unflinchingly there in times of crisis.  I have needed (with the exceptions of the ‘flitters’) and benefitted from all of these people. They have allowed for that ‘gradual release of reponsibility’ model to help me figure out how strong I am. They know now that I need help at the beginning of every big transition. I need company, and talks, and outlets and encouragement. They also know that I’m strong enough to go it alone if I have to. 

At this particular transition, I have gotten all of those things, whether inadvertently or very purposefully. Invites to walks, errand-runs and phone calls fill my need for idle chit-chat and distraction as I move into this new phase of treatments. I needed someone sitting beside me as I waited for my first round of radiation, watching horrified as the various burns walked in and out of the waiting room, gracing foreheads, cheeks, necks etc. I got that too. 

Radiation is different from chemo for me in that I have to go in alone. Perhaps it’s good that I’ve had so much time on my own as of late, because it may have prepared me on some level for the aloneness of radiation. I am not one who does ‘quiet time’ very well – I kind of run away from being in my head too long, because it’s busy there, and right now, it’s not necessarily a good place to be. The ‘what if’ lives there; the ‘what if I never lives there. I, therefore, try very hard to be that object in motion staying in motion and very much AWAY from those what if’s and what if I never’s. Perhaps this is the reason I’ve clocked almost 100km on the trails since chemo ended. Motion is good for me. 

So. When you’re strapped to a table high in the air at your most vulnerable, you really can’t be in motion, and you really must be in your head, unless you want to burst into song and join in with the 80s rock that seems to be the trend in the ‘Spa’, as I’m calling it for at least this first week. And while I can sing along to Chicago with the best of them, I don’t think the lovely ladies in Radiation would appreciate having to re-align me 50 times for a 10 minute session. 

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This leaves me with this: Visualization. I realize, as I’m manically trying to flip through the slides in my head to find my safe place, a place that will help me to keep breathing in-and-out-and-away-from-the-mounting-panic-so-that-I-don’t-launch-myself-off-the-table kind of place, that I am slammed into a memory of another terrifying time for me, having been carried across a hallway to have an emergency C-section because my baby was in trouble. I remember being sat on the operating table, in full transitional labour and full of terror, and being told to breathe, and putting my forehead against a chest and breathing in and out, in and out, while they put a needle in my spine and told me to relax. I remember being able to find that place where I could disappear into my head, and inhale and exhale,  and trusting that everything was going to be fine. 

This is where I stayed, for those very short minutes of radiation session #1 yesterday, eyes closed and meditative. And today was much, much easier. 

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