Woman canoeing at sunset on Jackfish Lake, Manitoba.

What I Learned at Young Adult Cancer Camp

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How did I get myself into this? Shooting down glacial runoff in class four rapids with nothing between me and drowning, but a plastic orange kayak? Me, whose idea of an athletic challenge is taking an intermediate yoga class instead of beginner. Obviously, I misunderstood when I signed up for kayaking camp. I had envisioned peaceful excursions along a gorgeous coastline. Nothing could be further from the truth.

Our first view of the river was from a bridge, where kayakers-to-be, including me and a bunch of my new camper friends, only know each other by nicknames. I’m Twisted, and there’s Herb, Peach, Wacky, Zena, Popcorn, Hendrix and Gadget. We looked down the ravine, water gushing, frothing around huge boulders. Herb looked at me and raised her brows, a cartoonish expression of exactly what I was thinking, “No way!”

The next morning, I stuffed both legs into a black neoprene suit that was tighter than any pair of skinny jeans.

“First we’ll learn how not to tip over,” instructed Pleaser. Keeping my body centered and still – that I could do. That I practiced weekly in yoga. But doing it in a rubber wetsuit strapped to a kayak, in water, was different. Be still, I thought. My body and the boat swayed from side to side. Calm. Steady. The water rose on one side, then the other. Find a spot on the kayak and concentrate on that. Near the head of my kayak were two words, First Descents — and I focused and breathed in.

We floated at the bottom of mountain canyons, the sound of birds drifting above, the snowcapped peaks glistening, producing the liquid ice that became our river. I could have stayed in those moments of bliss observing the sky reflected in slivers. Then our guides wanted us to move.

“Baby steps,” Slash said, showing us how to paddle, first one side, then the other, to go straight. I mimicked her motions, sliding my paddle in a gentle sideways eight pattern and glided a few inches, following Wacky and Zena through the sky’s mirror.

“Great job Zena, Twisted! Next step, turning.” Slash demonstrated again. Wacky, who’d been here before, followed in a graceful arc.

Shifting my bodyweight to the left, I mimicked Wacky, stabbing my paddle in the clear water. Immediately I began to tip, swiveled my middle, and returned upright. “Try again.”

Again, tilt, stab, swivel, upright. Again. Tilt, stab, SLAM. A thousand icicles pierced my cheek.

“Ok, this is how you get up,” Slash fell over gracefully, jabbed her paddle into the water and pushed herself back up in an instant.

“You try.” I pulled my paddle down into the water with me and tried to flick it up with enough strength to right myself. Nothing. “It’s in your body, you have to move, like you’re dancing — thrust!” she called. I stabbed, twisted and thrusted. Nothing but an inch or two. “Again!”

Three, four, fives tries and on the sixth, I flung upright. Then, just to be sure, I fell over again, and again, and shot myself up, practicing this strength I never knew I had.

You want me to purposely capsize, trap myself under my kayak? That was the next step. Slash and Pleaser made it look so easy, like a somersault, only sideways down through the frigid, suffocating water and back up to oxygen and clear skies. One tilt, a slight muscle shift and I plunged into the cold. Like jumping into unknown, time slowed as swirls of water rushed all around. The world above, wooshing sounds and floating words from distant conversations, disappeared. Pleaser had encouraged us to hang there for a moment, holding our breath. “Learn to get comfortable, so you don’t panic.”

Don’t worry about not breathing? Here, not breathing, taking a moment to pause, listen, feel, assess felt oddly luxurious. Like I had all of the time in the world.

What bolstered my courage while underwater was the distress signal, clapping the underside of your kayak. It made a hollow, echo-y boom. Our guides promised they’d be there within five seconds, grabbing a strap on the front of the kayak to roll us back over. Hendrix tried easing into a fast current. The tip of his boat sliced, he flipped. He was under, one, two, three, then boom, boom, and Pleaser was there, rolling him over.

“If Popcorn can do it with only one leg,” I told myself, “You can do this.”

We practiced capsizing, rescuing ourselves by kicking out, and rescuing others by rolling them over for the whole day. By the time we emerged from the water, I knew one thing: I was not going to die on this trip.

On day two, we tried some short white waterish rapids. Like going over a series of small speed bumps while riding a bike, they tossed me around a bit, pushed me forward and made me giggle like I was on a Tilt-a-Whirl.

“That was fun! How long until the next set?” I called over to Herb.

“You’re getting to like it, Twisted!”

Slash’s and Pleaser’s killer skills were matched only by their knowledge and experience of the river. We spent the next three days exploring different sections where the rapids range from class one, easy, to class four, difficult. Each morning, we started at a section we mastered the day before, then moved to bigger challenge.

The last day we started at the beginning, at that section of the river that we saw from the bridge. The jagged water ran two football fields. All of us floated, holding on to each other’s boats, at the top. One by one, we broke off. Each of us rode the rapids, as our fellow kayakers and guides clapped, hooted and hollered as we lorded over the river and our fears.

We came here to get out of our comfort zone, to learn something new about ourselves, and what we can accomplish. That’s the reason we all know each other only by our nicknames – to escape our usual lives for a while. My fellow campers and I were bald, chemo-addled, disabled in a variety of ways. And by graduation day, each one of us rode down something we thought was impossible only five days before. We took control of our bodies and our destinies in a way that we hadn’t been able to in years. At a closing ceremony around the campfire, we tied red string around each other’s wrists before we returned to doctors’ appointments, scans, blood tests and the uncertainty that lay ahead. Perhaps that was the greatest part of kayaking camp, feeling excited by the rough water ahead, maneuvering through everything blocking our paths, and seeing the calm waters ahead where we knew that we could just float.

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What 'Quality of Life' Means to Me as I Adapt to Cancer

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can·cer

‘kansər/ – disease; causing the body and mind to adapt, overcome, and embrace change.

Quality of life: What do these three seemingly simple words mean to you?

Someone who is living with a permanent illness which will impact their “quality of life” will hear this phrase from time to time.

Someone like me who is considered a “palliative care patient,” which is a polite way of saying my disease will eventually kill me, this term gets thrown around a lot, but do we ever stop to think about what it truly means?

I used to just see it as phrase. I used to see many things as “just phrases,” words put together to fill silences in sterile rooms to allow for some sort of relief from the inevitable uncomfortable points of cancer.

Until you live them, you are intimate with each word, and you get to know what each one will mean to you… you get to appreciate what kind of quality you’d like to live, and start to live it.

I am going to share my perception of these words, and hopefully… they will not just be words to you either.

This phrase, “quality of life,” is meant to bring a sense of comfort, a level of respect, a sign that no matter what the cancer is going to take from you – we are going to do our best to keep you comfortable while all of these changes take place, and most importantly… just keep you who you are.

There’s the first problem: expectations. If we don’t adjust our own expectations and expect this disease to change us, this will be the first disappointment, the very first of many tears, and the beginning of the harsh reality which is called life with cancer.

We cannot simply continue to live our pre-pheochromocytoma cancer, pre-adrenal insufficiency, pre-surgery, pre-treatment, etc., the exact same way we did before… right?

Well, I kinda did.

I think we all do in some respects, and that’s normal. The difficulty is realizing where you can no longer do so, and where you need to adjust your expectations.

I didn’t say give up there, did I?

Time to Adapt

So here comes the hard part, once you start to change… no one but you can prepare you for this.

The next time you hear “You’re so strong!” don’t shy away from it when someone admires your strength. Think about what it means to them, what it means to you, and how you have truly earned it.

So, you start changing and this “quality of life” thing everyone keeps talking about seems like a very far away ideal at this point…

“How am I supposed to have any sort of quality of life when this disease is doing nothing but take take take?

“I don’t even have a life anymore, so how am I supposed to have a “quality” one?”

“Everything I am doing is supposed to “provide me with better quality of life,” but after every procedure I’m left feeling worse and can do less”…

“How am I not supposed to lose hope?”

Fast forward a few months…

My disease moves quickly, sometimes it seems like I can blink and not recognize myself physically, or suddenly go from walking around seemingly “normal” to being completely bedridden for months and needing a wheelchair the rest of the time. That was the most surprising, and still is…

Overcome

Did I tell you how wonderful it feels to simply be a little more kind to yourself?

After all… how am I supposed to have any sort of life if I am not going to accept the fact that my life is different? Change is constant, and I need to be willing to accept that although my life is very different, it’s mine.

The fact that I wake up every day, is a beautiful thing.

The fact that I have woken up each day with a smile, and gone to bed each night the same way… adapting to each new circumstance, overcoming each new situation.

Most importantly, understanding that even the smallest victories are worth celebrating. Simple joys are to be found and appreciated everyday, because these “small” and “simple” things to someone else… likely mean the world to you.

Remember, although your life is different… it’s your life, and these are the things that make the quality of your living.

Embracing Change

Throughout most of my time advocating for my metastatic pheochromocytoma, I’ve chosen to share my own life. My hope is to help others come to the same realizations and learn valuable information about this disease that isn’t available to people like us, without having to also suffer along the way to get there.

Just in the last two months, having another treatment to control my disease has confined me to my upstairs bedroom, I’ve suffered the worst pain so far this disease has given me. It’s made me question my quality of life, since being palliative, I’m supposed to be as comfortable as possible, and enjoy my quality of life. Instead I’ve been writhing in pain, stuck in my bed, unable to leave the upstairs floor of my house.

It made me question… “Now how will we get through this one?”

And we did.

Because…

Cancer makes you adapt and overcome.

Months ago, my perception of having home care and setting up a bedroom on my bottom floor?

No way! I’m not doing that! Why would I do that!? Now!? I’m only 25 years old, I’m not putting a hospital bed in my living room, that will never go with my decor! (priorities)…

Remember those simple joys? Small victories? Well this was the greatest joy, a godsend, a massive victory!

I can now see out a window,

I have life fluttering around me,

I can see my dogs run around the house,

I can see my husband cooking in the kitchen,

I could choose a very pink blanket for my new bed,

I can walk to the kitchen and serve myself a drink or snack when I’m feeling well…

I was able to have a Christmas tree!

I can drift off to sleep right in front of my fireplace… watch the snow fall…

That smile? It was fading slightly for the first time when I was confined upstairs for all those days, it was still there… but it just wasn’t quite as bright.

That’s what quality of life is.

Those aren’t just words, this is my life.

And this smile? It’s brighter than ever now…

You, too, can adapt to your new changing situation, overcome your new challenges, and embrace the changes as they come. You just have to remember… your new life is exactly that, a new life. You must explore the beauty it has to show, the joy it has to give, and the blessings it has to offer.

Just remember, there’s no right or wrong when it comes to your life — as long as you’re the one who’s smiling at the beginning and the end of it.

Follow this journey at Pheo vs. Fabulous.

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When a Cancer Patient Confronted Me About My Hair Extensions

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The stress from caretaking had taken its toll. My hair, once long and healthy, had thinned and fallen out. At first in the shower where strands would cling together near the drain and again on my brush when any effort to make it look fuller only resulted in clumps left in the bristles.

A visit to my stylist began the conversation of extensions.

An opportunity to give my hair rest and time to return to health and fullness was just what it needed. She would take care of me, she said. After all, this was the friend in whose arms I cried when I lost my dad. It was she who took care of me when I needed to ready for his wake, it was in this chair she would slow down time for me and make it so I looked presentable for our final goodbye.

The next time in her chair would find me sitting and chatting as usual while she placed the strands strategically and expertly – you shouldn’t be able to see them, she explained. Nice extensions, she offered, was not a compliment. And so it began.

Every six weeks I would return to have them removed and re-taped; my own hair getting longer and healthier in its down time from the products I had piled on and the constant curling and blow drying to make it look … well… normal. There was nothing normal, however, about the last two years of my life. I had been powerless but to watch as the cancers ravaged the bodies of both my parents and then to be present as, passed away only weeks apart.

A full year had passed when my stylist had carefully laid out the extensions. We smiled over the length I had come in this time. My own hair was growing in healthy and strong; it wouldn’t be long until I no longer needed the extensions.

A woman, her head wrapped in a scarf, caught my eye in the mirror; she stood and made her way into our conversation. She was angry – extensions were made for people like her, she explained. Those who had lost their hair due to chemo, those who needed the hair to look normal. The women who donated their locks, she went on, did so out of generosity and love for people like her – not for people like me, who were stuck on their vanity and selfish. That hair – she pointed out – was meant for a wig so people like her could, for the briefest moment, glance in a mirror and see a time before cancer. A time where they felt beautiful and strong. Shame on me for stealing it from her.

It all spilled out then, her grief and her pain – the desperation to fit in – to belong to a society that put so much emphasis on physical beauty, the desire to be well and to be known as healthy. She was crying when she finished speaking, and my heart ached for her and her struggle. Her nemesis was breast cancer, and she was sorry – not sorry – for telling it like it was. Maybe I would think twice next time, she spat out.

In that moment, I was back at my parents’ house, standing behind my mom as she primped in front of the bathroom mirror. Her hair but wisps, thinning and falling out from the chemo. How she would try to disguise the progression of the cancer by styling it differently until even that was no longer an option. How she would sigh at her bedroom mirror at the bald spots and patches that threatened to multiply. How she wanted so desperately to hold onto that last bit of normalcy she felt with her hair.

I heard myself say, “Thank you for sharing your story” to the woman in the scarf. You’re right, I said. There were women who grew their hair long only to donate it out of kindness and generosity to those touched by cancer. But, I too had been touched. I told her then how I had to stand by and watch as cancer ripped apart my family, how brave my parents were and how in the end they would pass weeks apart. Just because I looked “normal” didn’t mean I felt it. I had been devastated by their loss and had been on my own path to wellness.

We held hands and cried together then, she apologizing – so overwhelmed by the tests and the treatments and now the waiting – that she just wasn’t herself. In that moment I was grateful for the opportunity to provide forgiveness and offer my prayers to this courageous woman who was battling such a formidable opponent. Hopefully, it made a difference.

We want to hear your story. Become a Mighty contributor here.

The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Submit your story here. Remember to associate your story with our partner Fuck Cancer!

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When People Ask If I'm 'Better' Now That the Cancer Is 'Over'

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It’s not over. It will never be “over.” I know, it’s a depressing thought. But so many people have asked me, “You’re better now?” However, it’s not really a question… more of a statement. Like they are telling me I’m better now. Doctors are really good at this — trying to tell me I’m feeling better and everything is OK. Because that’s easier for other people. Because I had the cancerous organ removed, therefore everyone thinks it’s over. But the hard truth is, it’s far from over, and it won’t ever be over. Symptoms may improve, even to the point of remission, but it’s always there. Either as a memory, an unnamed pain, a worry in the back of the mind.

Putting cancer aside… (which is a strange statement, I know) having an autoimmune disorder is a long-term battle. It’s a daily struggle with flair-ups and remission. It can be debilitating at times, and other times it’s a distant thought and cannot even be detected.

Autoimmunity is a lot like cancer in that way. Remission, flair up, treatment, repeat. When that diagnosis comes and you understand the weight of it, it sinks in with all of its ups and downs and uncertainty. It changes life forever. Life will never be the same when something of that magnitude enters.

So what do you do when facing this diagnosis if it’s never over? You live… every day with courage, perseverance, and you try not to let the anger eat you alive. I have been angry, and I struggle almost daily with it. Not really with the question of “why me?” but with the realization that I feel truly alone. The loneliness has been deep and has made me rethink every single priority. However, I have come to be grateful for this realization. It has brought back into focus that the only true connection comes from within and connects to something bigger than ourselves. To the universe, to nature, to God.

So even though it will never be over, I believe the journey is meant to mean something. To point us where we need to go. To make us something more than we were before.

Or maybe it’s just a joke the universe is playing on us and it means nothing… either way.

*Disclaimer: The last sentence was my attempt to be funny and lighten the mood.

Follow this journey on The Best Cancer.

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The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Find out how to email us a story submission here.

Thinkstock photo by Ryan McVay

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The Impact of Cancer on Family and Friends

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You do not need to have cancer for the disease to have an impact on you. What should you expect when someone you know is diagnosed with cancer?

When someone is diagnosed with cancer, relatives and friends are often the forgotten ones. If that is you, then you will know that you are also affected by the disease and may require help to cope.

But you may also think you are not as deserving and important as the person with cancer. Well, the impact of cancer on all is very real, and to take care of yourself makes sense.

Often family and friends neglect their own well-being when, understandably so, a greater focus is on the care for the person with cancer.

You may even feel guilty doing something you enjoy or carrying on with some personal routines like going to work, hobbies and socializing.

If someone close to you has been diagnosed with cancer, this will affect you, too. Different people have different ways of dealing with it.

You, too, may undergo a life-changing experience and find yourself on your own unique cancer journey.

The impact on family and friends can vary and be long-lasting (in no particular order):

  • Economic: You can experience financial difficulties with extra medical care and associated expenses. If the person diagnosed with cancer has to stop working, this may lead to a reduction in household income and threaten mortgage or rent payments, school fees and more.
  • Work: Employers may be more or less accommodating when you require time off or more flexible working hours.
  • Social: Friends and relatives may be unhelpful and withdraw from you and a situation in which (for whatever reason) they cannot or do not want to be more actively involved.
  • Relational: You may find it difficult to make time for others or to be emotionally available. This can lead to friction and difficulties where others depend on you (e.g. children) or are less understanding of what you might be going through.
  • Spiritual: You may experience a crisis of belief and question why your relative or friend has cancer. Indeed, you may find it difficult to get a sufficient level of spiritual energy from within.
  • Physical: You may develop new or draw on existing coping mechanisms, which in the long-run may be unhelpful and lead to new problems: eating too much or too little, smoking, drinking, drugs, exercising too little or too much and such like.
  • Emotional: The psychological and mental impact of cancer on family and friends is not to be underestimated.

Common feelings are:

Helplessness  –“There is nothing I can do to make it better or control the situation.”

Why not me? — Feeling left out and isolated when the main focus of others and medical staff seems to be on the person with cancer.

Disbelief – “When will I wake up from this nightmare?”

Bereavement and lossGrieving for the other, for life and the relationship the way you knew it.

Anger – Why is this happening to us? Why now? Why doesn’t anyone do something? You may also find yourself at the receiving end of anger and irritability by the person with cancer or other family members.

Resentment – “We were not meant to live our lives like this.” You may also feel resentment towards the person with cancer – for getting it and for not “fighting harder” against it, and towards the disease interfering with the life you hoped you would all have.

Uncertainty and fear – Over cancer treatment, the future, your ability to cope.

Blame – Was it their lifestyle, you, others who contributed to it?

Being passive – You just want it all to go away.

Feeling depressed and lacking motivation – You feel overwhelmed with no clear way out.

Cancer counseling and therapeutic support for relatives and friends can assist in dealing with such difficult experiences and emotions.

Over time this can help lighten the load, rebuild emotional energies and help you explore choices available at this difficult time.

Cancer can changes lives forever – even if you are not the one with cancer.

We want to hear your story. Become a Mighty contributor here.

The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Find out how to email us a story submission here.

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How I Moved Past My Anger Over My Cancer Diagnosis

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When I was diagnosed with breast cancer, I felt everything else but angry. The anger came later — the weekend before my surgery — when I walked past a local cancer charity run.

Out of the blue, I suddenly exploded. The flood gates, the iron doors, reasoning and rationality, trust and self belief — none was strong enough to hold back the eruption of rage, anger, bitterness, hate and resentment.

The anger was bound to happen. The anger had to happen.

It had been six weeks since my cancer diagnosis. Two more days and I would finally be operated on, to be followed by chemotherapy and/or radiotherapy. It all depended on the lymph nodes, so I was told.

I used the time to prepare emotionally, mentally and physically for the most challenging and terrifying time in my life.

I knew about fear and terror. And I knew I needed to be prepared to keep sane, resilient and manage the physical and emotional onslaught.

I prepared well:

• I closed down and sorted all areas of my life that otherwise would cause stress and anxiety (work, financial security and relationships).

• I was (and still am) working with an herbalist to boost my immune system and strengthen my liver.

• I crafted some rituals that would engage my senses and keep me calm and grounded.

• The theme of nature and being in touch with my senses started to run through it all:

Hear: Audio books, soundscapes, Tibetan singing bowls.

See: Colors, landscape pictures in form of bedspreads, blankets, cushions, postcards on my ceiling.

Smell: Incense oils and candles.

Touch: Things that I could touch, feel and cuddle.

I was in an OK enough space and ready to get things started. Then I walked past the local park where a cancer charity run was under way. Lots of people (mostly women) in pink. Loudspeakers blasting out encouragement. Banter and laughter, happiness and pride, togetherness and strength in numbers.

A separate community for the initiated. Slogans and names on their backs: “for mom,” “for my wife,” “for my sister,” “for me,.”

Their sweat and then, finally, my tears.

I cried. Of course, I had. I was still in shock and disbelief, but I also had to hold it together and get through this.

But this sudden, forceful and powerful confrontation with others’ determination and happiness was too much.

Finally, I combusted, and my anger about having cancer finally broke through.

It was not pretty, it was not dignified, it was irrational and ugly. But it did feel good, honest and long overdue!

Of course, everything I felt about the runners was really about my own issues. Everyone has their own story, personality, history, wounds, trauma and fears.

But the combined positive and inspirational energy of this event was in total contrast to my inner reality of fear and anger. I really didn’t want to be part of that community and that story. I had never asked to be part of a cancer community. I even hate running. Even if I loved it, I might never get the chance again. And what’s more, I had no one to run for me. Self-pity does feel lonely.

Now, some years later, when I see people on a charity run, see names on their backs and see them being applauded and supported, I often feel a stab in the heart, a lump in the throat and tears in my eyes.

I am no longer angry. I am humbled and touched. Grief, resilience, determination and achievement can be side by side.

Anger, rage and despair are normal, but it’s a dark place to get stuck in. We need to move through it the best way we can.

A version of this post originally appeared on Between Self and Doubt.

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