"Mama, can I brush your hair?"

“Mama, can I brush your hair?”

We are standing in the bathroom, having the conversation about washing our hands, with soap!, for the one hundredth time. Today. Perhaps he is trying to procrastinate or get me off topic, and it works. This is such an act of kindness, a small and precious moment, that I can’t say no.

He sits me down on his little stool, the one he doesn’t need anymore to reach the sink, and begins to work his chosen brush through my hair.  It is the longest it has ever been and I don’t fuss with it much these days- no straightening or curling iron, so it’s wildly wavy and more complicated than he originally planned, I think. But he’s careful and meticulous, gentle, laughing as he brushes it all over my face, Cousin It style.  He doesn’t know how much I love to have my hair brushed or how poignant this moment is to me.

When I was first diagnosed, my first thought was that I wasn’t going to live long enough for my son to remember me. He wasn’t yet three. I would be nothing more than his mama in pictures. In those first few months, it took every ounce of self control I had to not cry every time I looked at him. I worked so hard to make life look and feel normal for him, but my whole heart broke if I let my eyes linger on him too long. Tucking him into bed at night, I would cuddle him up and wait for him to go to sleep before I would silently cry long after he settled into the soft breathing of a slumbering toddler.

I would love to say that this dread went away after my big surgery, or that December after I received my official N.E.D. status, but it didn’t. I knew I could handle pain, and I wasn’t scared of death in its terminal finality, but I was still so terribly, dreadfully afraid of leaving him behind.

When we got through Year One, I knew I was one step closer to not being a myth in his mind. This spring, as he approaches five, I realized that it has been months since I had to pull over on the side of the road to cry. He has real memories now, and I’m pretty certain I’m one of them. I also understand that my anxiety around cancer runs far deeper than whether or not my son will remember me, and I’m working on navigating the terrain of “survivorship.”

In the two years since my tumor was found, I have read countless stories of parents with cancer, and my heart breaks every time.  Tonight I cried over the diagnosis of a man I’ve known my entire life, someone not that much older than me who has a little girl who deserves to have a father who can watch her grow up.

There is so much about this disease, or any one that makes you significantly contemplate your mortality, that weighs heavily on your mind. No one wants to see a child sick, or anyone for that matter, but a parent with cancer has the additional burden of not only wanting to get better, but also fretting and worrying about making sure life doesn’t come crashing down around their children or what will become of the little person who is their world.

I am more grateful than I will ever be able to say for the time I have been given to be part of his world, and it’s because I know that my time may be limited that I work every single day to make sure it is a better place. I’m sure he doesn’t know that in any conscious way, but my hope is that somewhere, ingrained in his memories of me, he knows how deeply he is loved and how his existence makes me fight to not just exist, but to truly live.

So for today, that’s what I have to offer. Nothing grand or especially noteworthy, but a reminder that we are here for all of these precious moments, which, done in kindness and love, cannot help but make the world better for us all.  No one knows how many days we have or how many memories will will get to create, so it’s best to honor every one we are given. Twenty years from now, he may not remember asking to brush my hair, but it is my hope that I will be around to remind him of how much those little things truly do mean. And if I’m not, I hope the accumulation of many little memories paint a picture that small gestures can yield indelible good.

When my body hurts, there is nothing I want more than to be wrapped in something warm and soft, cuddled into a cocoon where I can try to forget about the pain. Reading (the right book) is a fabulous escape. Writing is the next best thing. Needless to say, today has been tough.

Please, could someone please wrap me in a nice soft book? My body needs a new reality today; I’ve been combing the shelves for something cashmere bound and down filled, a balmy 76 degree place to nestle and nest.

Adventure, romance, travel, happy endings all, filling the pages with the appreciative murmur of satisfied characters, plot and theme essentially irrelevant so long as I get amber gold imagery conjured from mellifluous language, deep rooted words smelling of sandalwood and exotic fruits.

I’d like to lie back on this raft of silken words, a river ride of clouds and sun, and watch the galaxy turn in slow motion while shooting stars land in a whisper like so much dandelion fluff or milk and honey rain pitter patting soft and low, percussive kisses, feather light.

Give me a thousand pages where I can alight barefoot and quietly wander, methodically picking my way through the dense forests of metaphors and allusions, seeking but not lost, senses heavy with wonder, my mind electric.

In return, I will strip off this weighty dramedy and put it back on the shelf or lose it under so many cookbooks and catalogues. It’s pages carry the acrid smell of pain and jutting plot points, sitting in jarring juxtaposition to an underlying maudlin theme. I’ve never been one to cast aside a book, but this one needs some serious editing.

Fixed State, Change State

As Americans, we seem fully willing to acknowledge that our bodies are a work in progress. We have no problem telling someone how many hours we spent at the gym, how many pounds we lifted, how many miles we logged this week. Our FitBits celebrate our steps, MapMyRun shares our routes and times with the world, countless workout selfies and pictures of chia seed-laden smoothies serve as “fitspiration” to keep us on track. Despite the fact that many of us don’t get enough quite exercise, there is no shame in proclaiming to the world our progress toward our body goals.

My body goals have very little to do with my mile time. I’m not working toward the perfect six pack or buns of steel. I’m just really psyched to have an essentially functional arm and I’m working exceedingly hard at breathing these days. If I had a little gidgy to count the number of hours I have spent over the past 17 months in physical therapy, (trying to) exercise, visiting specialists, redesigning my wardrobe, attempting this or that new technique, or simply flat on my back in a tube being imaged, all in the name of getting my body to cooperate, I would be rocking the celebratory confetti.

So last week, after a particularly miserable episode of feeling like I was either going to A) drown, or B) be poisoned, thanks to an overabundance of stagnant lymphatic fluid hanging out in my upper torso, I happened upon a snippet of a TED talk (which I will try to dig up and reference later) that essentially posed the question, “What if we worked on our minds in the same way we worked on our bodies?” The speaker was noting how willing we are to work on our physical selves, but our subsequent inability or unwillingness, thanks to our classic American reticence, to talk about our emotional well-being.

Full stop.

There was never a doubt that I would have help regaining my strength or range of motion, and it has taken an impressive team of experts, including oncologists, surgeons, neurologists, physical and occupational therapists, and chiropractors to get me to where I am today. Last March, when I started manifesting symptoms of lymphedema, I added even more members to my already full roster of health professionals, including three different physical therapists, professional compression garment fitters, skilled tailors, and soon, acupuncturists.  As frustrating as it can be that my body still doesn’t function in a way I would like, all of this was essentially expected. There was never any question that I couldn’t do this alone.

So why did it take a team of wild horses (and my best friends, my wife, and my mom) to get me to agree to at least walk through the door of an oncological therapist? And why did it take me over a year to do it?

I grew up the proud product of rock stubborn Irish stock. One of my mother’s favorite sayings, proffered countless times as I lay in a heap of reins at the hooves of some horse is, “Are you bleeding? No? Buck up. It’s a long way from your heart.” This woman has severed her big toe and finished barn chores and taken a hammer to the face and continued building (separate incidences, but no less hard core). Couple this with the fact that she was the primary caregiver for my completely unstable grandmother for a lifetime and you get someone with very little tolerance for nonsense and shenanigans. And while she has never treated me with anything but kindness, understanding, and softer kid gloves than I ever would have expected through this entire cancer ordeal, there is an undeniable vein of steel that permeates my consciousness, one that has frequently served me quite well. Stand strong, work hard, be independent. We don’t do wussy here.   

When I learned about my cancer, the radiation, surgeries, potential side effects, and, you know, the possibility of dying, I truly didn’t expect for it to have a profound effect on me. I thought, Suck it up, Buttercup. Many people have been through so much worse. I thought that I would be able to buck up, get back on the horse, and continue life as usual without much interruption. But for so many varied reasons, that has not been the case. And mentally, emotionally, I was not prepared. I was not prepared for anxiety, depression, and fear. I certainly wasn’t prepared to need help doing something about it. And for all of that I have felt so damn weak.

Cancer changes your life. It changes your body, your health, your job, your family, your sense of safety, stability, and well-being. It changes you. No matter how hard I wanted to believe that wouldn’t be the case when I was first diagnosed, no matter how hard I have fought for it to not be true after my surgeries, there is simply no denying this fact. Trust me, I tried for all I was worth.

This week, thanks to more body work, I achieved 15-20 degrees more range of motion in my arm. No one knew if this would be possible, and in fact, there was no indication that it would be. I also went to therapy and talked about my life adjusting to cancer. I didn’t think that would be possible. The fact that my body still shows signs of growth, rather than being frozen in the static state it has been stuck in for the past year, gives me hope. And more than simply giving me hope for strength and mobility in my arm, it gives me hope that my mind will continue to grow, adjust, and settle, as well. There is no shame in working on it. Now if I can only find an app that will deliver chocolate every time I hit a new milestone.

At least I'm still considered a "Young Adult"

It's the day before the first day of school.  Typically, this day is spent somewhere on the spectrum of frantic last minute preparation and resignation that nothing will ever be truly complete/done/ready to my idealized perfection for the moment when students first walk through the door.  For the first time since 1981, I will not have a "first day of school." For reasons that are not entirely clear to me, per order of the Board and Superintendent, I am not allowed to discuss school matters with Profile staff, students, or the community.  I cannot welcome my students, meeting new faces and assuring them that Profile will be a good, safe home for them.  I will not see how much my veterans have grown and matured over the summer. I won't get to hear about internships and summer jobs, see gleaming smiles set off by tan faces.  Instead of laying awake thinking about what I will say at the opening assembly, I will lay awake in bed for the umpteenth night, debating on whether or not I should give in and take an Ativan, my brain gnashing frantically but without resolution at what it means to be forced into this "medical leave" of mine that feels an awful lot like banishment from not just a job, but my vocation.

As I have recently learned, I belong to the "Young Adult" category of cancer patient, those of us supposedly in our working, reproductive, familial, and physical primes, for whom cancer poses a series of complicated challenges aside from the disease itself. Many of us are juggling young children and careers, struggling to maintain health insurance and salaries, perhaps pensions and life insurance, if we are lucky, while also spending and inordinate amount of energy fighting this demon called cancer. We are far too young to consider retirement, but given the uncertainty of treatment schedules, prognosis, and the simple cost of insuring us, we are not the first to be called for an interview, either.  It is illegal to discriminate against someone who is sick, but that doesn't mean it doesn't happen.  It seems it is surprisingly easy for us to be pushed out of the way.

I can handle being sick. As I have learned, burns heal.  Scars fade. I don't like being poked and jabbed and scanned ad nauseum, but I understand it.  Fatigue. Well, that's new and less than exciting, but I will survive it. What I can't abide is feeling inert, like I don't have a purpose. Yes, I know.  My job is to heal.  My purpose is to get better. And yet, I can't stand the anxiety that bubbles up in me when I hear about something happening at school or with one of "my kids" that I am not allowed to do anything about. I spend as much time worrying about the family I have created over the last seven years as I do wondering if I am going to live seven more.  Neither is a healthy pastime, and yet many inky hours have been spent at this rather than correcting papers or planning faculty in-service.

For every problem I have or pose, I typically have at least one solution. But for this one, I'm not so sure. I can't change the fact that I have cancer.  I also cannot change the minds of the powers that be to believe I or people in my position are still capable of being productive members of their work societies. But when I am healed? I may have just found a new cause to fight for.