born on the (2)4th of July

A year ago, I hadn’t started treatment yet. It was just before my birthday and I was at the reset starting line of fighting stage 4 cancer that had spread throughout my body. A whole year has passed. I’ve had three lines of treatment drugs and I was monitored every three months. What we continued to see was that everything stayed stable except those god damn lungs. My latest CT scan was this week. Glass half full version: no new growths especially in the organs which is when things turn really serious (there’s a new level of relativity with cancer…like stage 4 isn’t serious enough, right?).

The glass half empty version: the nodules in my lungs are resisting treatment. Some have doubled in size since March and one of my lymph nodes has increased as well which causes pain under my left arm. The treatment is not working and I have disease progression.

There is a clinical trial at Princess Margaret Hospital in Toronto that is studying my specific type of breast cancer which is called metastatic HER2+ breast cancer, (one in 10 breast cancers are HER2+).  I met with some pretty amazing, smart, dedicated folks there yesterday and we have begun the process of entering me into the study.

There are certain tests that have to be done to ensure my eligibility. One of the tests looks at liver function.  Since I started the Ketogenic diet three months ago, I have found significant success in that I have no more side effects after treatments and I’ve lost 38 pounds. I feel great and strong and as if I have never had a thing wrong with me. However, sometimes with the Keto diet, it can impact liver enzymes. My liver values are high enough that my oncologist thinks they will not meet the criteria for the trial. The very change that has brought me increased health and wellness could make me ineligible for a medication that could be life-saving. The early research in this clinical trial shows an 84% success rate in the trial drug which is administered with two other drugs that I will be on no matter what, as the next line of treatment. I won’t go into details about how the drug works but it is very different from what I have had so far and essentially communicates to the cancer cell to stop growing.

The doctor leading the clinical trial specializes in metastatic HER2+ breast cancer and only has about 10 patients under his care on the trial. Even if I don’t make it into the study, I have decided I will be transferring my care and treatment to Princess Margaret to have a better chance of positive outcomes and increased access to services and treatments that are being researched at Canada’s leading cancer hospital.

There is a gift in being introduced to this trial, whether I am accepted or not. I believe that I’ve exhausted my time at Juravinski and while I am grateful to the many people there who have guided my care over the past five years, I am excited to take things to the next level. I mean heck, Princess Margaret has free WiFi, a daily cap on parking (something that drives me crazy in Hamilton – it’s highway robbery for the most vulnerable people), and a Patient Portal where I can access every scan, doctor’s note and appointment in real time. 

It will mean much more travel (back to back days of appointments and treatment at PMH), costs and some treatment options that are not covered by the government. Did you know that in Ontario, if you were already on one cancer drug and you go off of it, the government will not pay for you to go back on it? And yet, the clinical trial requires me to be on a drug I was on in the past (Herceptin). The nuances of navigating the system are a rabbit hole and I have such empathy for those without the means or awareness to fully understand and manage their own care.

The silver lining is that hopefully, I’ll reach my next birthday with very different outcomes. I will move on to a heightened sense of care, research and treatment options that will bring about positive changes. Being part of a study means a far more rigorous schedule of diagnostics that will ensure that the most minute changes are caught very early and can be treated effectively.

Turning 44 next week will be about continued advocacy for my well-being, a growing network of experts and opinions and above all, another year of living oh so wisely, with all the things that matter at the heart of all I do and letting the love and generosity of my amazing family and friends spin their web of protection and comfort around me. There is no greater gift than that.

 

Advertisements

girl, where do you think you’re going?

I’ve been in love with the Lady Gaga song, Joanne, for a while now. This song was written for Gaga’s paternal Aunt who lost her life in 1974. The lyrics have lifted me up out of my own despair and darkness. It has taken me a whole year to get here. To feel empowered, strong, hopeful and joyful, calm, content and…happy. Here’s a snippet of the lyrics:

Take my hand, stay Joanne

Heaven’s not ready for you

Every part of my aching heart

Needs you more than the angels do

Girl, where do you think you’re goin’?

Where do you think you’re goin’, Goin’, girl?

If you could I know that you’d stay

We both know things don’t work that way

I promised I wouldn’t say goodbye

So I grin and my voice gets thin

Accepting the unpredictable and getting comfortable with the unknown is not easy, especially for a type-A, Leo who loves to have everything planned, detailed and controlled.  When you lose control over something so fragile and important as your life, it leaves you feeling like an earthquake has hit for days and you move on, picking up the pieces and wondering when it will hit again.

As with any diagnosis, crisis, or life event that causes turmoil and pain, it is so hard to find your way back. The thing is, there’s really never any going back or regaining your past of hyper-planning and control.  You never had any of these things. I’m not sure how you can learn this without the earthquake and if you do, you are a step ahead of the world. What I do know is that you can only move forward. It’s really slow and painful and filled with questions. It’s filled with little tremors that return just when you think you are getting to a good place again.

And so, how do you move forward? You get up everyday. Some nights you don’t sleep. Some days you cry while cooking dinner, thinking that you only have so many dinners left to make. So you write everything down. Letters to your children. The songs you sang to them when they were babies. The life lessons and hacks you think they should know such as, why it’s important to pick up wet towels and how to give yourself to a partner while always being true to yourself. You make videos and send emails to an email account they don’t know about yet. It’s filled with stories of the time you caught crayfish in the creek, the days you went cruising in the car with ice cream and french fries and the nights you had pillow fights and fell asleep together.

Because you want to be here for as many firsts as possible. You’ve been so fortunate to see so many already: first words, first bike ride without training wheels, first day of school, first storybook they ever wrote, first graduation and first heartbreak. Just as there are always firsts, there will always be a last time too. The last time they hold your hand, the last time they let you fall asleep in their bed, the last time they want you to sing along with them. I celebrate the lasts, too. These are milestones and moments of tenderness that no one prepares you for. Just like a last dance, a last day living at home, a last day being single, a last day they think they will never love something so fiercely and grandly as their first child.

And it’s okay. Because all of my firsts and lasts and every nano-second in between like preparing them for life and love and pain and loss, has made them who they are. Strength, compassion, kindness, respect and love for one another. And with this, comes peace.

I had all of my own firsts. My first love, my great love, my first twinge of life within, my first glimpse of the world through someone else’s eyes. We live to carry hope and carry all that’s possible. And like a supernova, we will all have one last brilliant, mind-blowing run before we fade, making room for the birth of a new star that will light the heavens and sustain our curiosity of life beyond this one.

Remember this: we aren’t meant to walk this earth alone. For twenty years, (almost half of my life!), I have had someone beside me. Always cheering me on from the sides and knowing when to come out front to lead the way. If we are lucky enough to live this life with a partner who gives of themselves, who cries with you in the middle of the night, who helps you up when you can’t move, either from immobilizing pain or immobilizing emotions and who shares your deepest fears of being left alone on this earth and carrying your torch, then we can consider ourselves very blessed. Partnership is not about perfection or roses and violins everyday. It’s about the truest understanding and acceptance of the essence of you without judgement, selfishness or pride. It is an honest, bare-naked vulnerability from which grows and nurtures the most simple beauty of all life is.

So Stefani Joanne Angelina (a.k.a.Lady Gaga), I know that heaven’s not ready for me yet and that so many hearts need me more than the angels do. But when I light the way into the starry skies, know that I have lived. I have loved every first and last and I have had every remarkable person beside me for the ride. Girl, I know where I’m going and there’s nothing but peace in that.

hope floats

I’ve been thinking a lot about hope lately. It comes in all forms and disguises, floating throughout our universe. We may see or hear the signs, or we may feel them. Sometimes we have no idea what hope is or why it’s there. Or, why anyone would choose to believe. It’s easy to rhyme off words of wisdom, quotes of hope, inspiration and relative happy thoughts.

When our world is rocked into complete darkness and sorrow, be it from a fatal disease, life-altering news, an accident, dissolution of the heart, or the biggest opponent of hope: death; words of hope just don’t cut it.

Silver linings, however thin their thread, tether us to what we need to believe: that there is a greater purpose, a greater power at work. Otherwise, why are we even here? What’s it all for?

For me, it has taken almost one year. A year of anger, sorrow, paralyzing fear, sadness, despair and every opposite of hope there could be. I told myself that I believed. That there was goodness to be found in each medical report, in every three-month scan, in my darkest thoughts, that I was to try and glimpse the light, however faint.

I went along with every well-wisher and good intention, with all the positivity and tsunami current of sheer not-allowed-to-think-otherwise. Hope is what’s supposed to make it easier for those around you and for those who bear witness to you running for your life. The cumulative inhales of goodness and exhales of all things we aren’t supposed to talk about or feel.

The truth is, I am the only one who needs to believe. It starts with me. And while I had my hours and days of sadness, they slowly rolled into weeks and months until here we are, a year of looking back on how I lived my 12 months. How I chose to live. How I will choose to live the rest.

I believe that life unfolds for you and with you. That the people who stand beside you will let you fall because they are there to hold you. You just have to be willing to allow yourself to let go. The hope of everyone else, including yours will storm the universe and there is great strength in that.

Hope is a funny four letter word. It holds great promise and purpose. It yields to all things logical and tangible. Yet without it, we can be stuck in a vortex of terror, unable to move and become unhinged by the slightest winds.

This is not my whole story. For hope has made it possible for this to be simply a chapter. I choose to believe that there is a greater power and that my story is a continuance of prose that will long exceed my capacity to write it. Believing gives way to life, they are one and the same, I see now. Hope is a way of honouring – what is lost, what is present and what is to come.

 

shitty shitty bang bang.

Sometimes, we don’t get the news we want. A lost job, a missed opportunity, the guy who’s just not that into you. It’s never easy.

How do you stay positive in our hyper-positive, universe-balancing, energy-shifting, situation- reframing world? Do you remember a time when bad news was bad news? You could say it, share it, or keep it inside and people pretty much gathered around you for a brief period to commiserate and then you carried on. I’m not saying this was better but perhaps bad news served a different purpose. Whether it was you who learned something from it or it set a boundary for someone else, (“remember what happened to so-and-so down the street when she let that hot water tank heater guy in and he robbed her blind?”). Many women scheduled mammograms pronto upon hearing my diagnosis.

It’s almost as if nowadays, we can’t sit in our own shit. Not in a neglected nursing home kinda way but linger in your own bad news. Your shit. Whatever it is.

The current climate feels as though there’s a bit of shaming when we allow ourselves to honour the news, situation or challenge. When did it become bad, to be sad? I don’t really think this is true, it’s simply a hypothesis on a particularly hard day.

Here is where I struggle: staying positive about my life situation to the point of ignoring the possibility of bad news.

Today, thanks to a heart-tethered friend, I learned that to have a somewhat healthy response to a setback, I can’t hide from the possibility of it. There is a measured balance to living with uncertainty. That’s what it boils down to.

Good news or bad news hits everybody, every day. Since we don’t know what that will be, we must relinquish control which is not in my nature. No one knows what lies ahead. All of the literature and pop culture today is about letting go, the untethered soul, yoga posing your way to mindfulness and living your true self. I’m not so sure.

Warrior pose is useless without ammo.

I want to be tethered to something. I want my feet planted firmly on the ground and when I get to a cliff, I expect there to be soft waters below. The truth is, it is our response to external shit that determines if those waters will appear to cushion our fall.

Today, at my three-month CT Scan follow up, I learned that everything is stable, except one thing. My lungs. There are three little assholes sitting in my lungs, laughing. Laughing at the infusions of antibody therapy I’ve had since the summer. There are over 30 tiny spots throughout my lungs and they have not grown, except for these three.

I knew this was a possibility someday. I ignored that today could be that someday.

The oncology protocol is to move onto different drugs that will better target these aggressive cancer cells that are putting up a resistance.

This new treatment only became available in Canada two years ago. Side-effects could be a little heavier but that’s okay because here is what I know: I am getting a brand new drug therapy today that will take down my three amigos. Maybe now is the time to be thankful for a newer, better, laser-focused shot. Bang. Bang. Bang.  This is east side meets west side. Tupac vs. Notorious B.I.G. I am a Hamilton scrapper armoured in steel. I have a new perspective which is this: Take the uncertainty and stand in it.

i write the songs

“My home lies deep within you, and I’ve got my own place in your soul. Now when I look out through your eyes, I’m young again, even though I’m very old.”

Seeing your own handwriting tattooed on someone that you watched come into this world, is a truly moving thing. A young woman who shares your name, whom you’ve watched bloom under the sun of her youth, stand firmly planted during savage storms and emerge triumphant from the darkness of dawn, inspires me with her courage, tenacity, power, wisdom and resilience.

I suppose Barry Manilow said it best above, as I feel as though I am looking at the world through her eyes now, since a part of me is etched in her stone, in her flesh, forever. I can be young again through her and within her. She has me etched in her heart forevermore. Now, I have my own place in her soul.

When she asked if we could get matching resilience tattoos, I jumped at the idea. We had been planning it for months. It hit me that she was actually asking me to write out the word that symbolizes her life, her mind, her beautiful heart, and have it transferred onto her. It brought a feeling and realization of an eternal connectedness, an umbilical cord transcends time or space. She got her tattoo today and mine will be in a few months.

And so, I write the songs of a pure and abiding love. One that is a constant beacon of trust, of hope and love. A song of a free spirit. Of a willow tree whose gleaming graceful leaves offer shade and shelter to those who flock to her. A song of pure determination, grit and goodness, strength and serenity, force and peace.

“Music fills your heart

Well, that’s a real fine place to start.

It’s from me, it’s for you

It’s from you, it’s for me

It’s a worldwide symphony.”

The love and kindness in this world are upon you. The winds will be forever at your back. The light that shines from within you will be reflected on a million waves of beauty, beaming in abundance for you always.

my gifts of imperfection

One of my favourite social researchers on courage, vulnerability and empathy is Dr. Brene Brown (http://brenebrown.com). She says that “courage is contagious. Every time we choose courage, we make everyone around us a little better and the world a little braver.”  

In her book, The Gifts of Imperfection, she explores “letting go of who you think you’re supposed to be and embracing who you are”, by discovering and accepting our flaws that ultimately result in the gifts of courage, compassion, and connection.

Here are my recently discovered gifts of imperfection:

Confidence: Marin’s anxiety of starting school (and her flat-out refusal to go), allowed me to see the world through her eyes and extinguished my personal and motherly doubt even when it meant being unconventional. I gave her what she needed – love, compassion, patience and respect which were fully reciprocated by her and I gained the confidence and self-assurance that I was doing what was right for us. She is now a full-on school gal.

Courage: Embracing the unknown has allowed me to let go and learn by being open to opportunities that may have otherwise gone unnoticed. With a new lens of acceptance, I don’t need to fix and plan everything or worry about fixing and planning everything. I know that entering the deep, dark cave is far less scary than standing at its door, waiting. There is more fear in standing at the cliff’s edge than in jumping off. So now, I spend a little less time at the edge and more time in the waters below.

Wholehearted Living: The gift of leaving is living. There are so many gifts in knowing you are closer to the light, so why not try to be the light for as long as your candle is lit?

Some days, I stand at the cave’s door not wanting to enter. Wanting to turn around only to realize that wolves are chasing me and that’s how I ended up at the cave. So walk through it. It’s scary and pathless, navigating in total darkness. Only to trust that each foot will find earth and each step will move towards goodness. On the hard days, I remind myself that the motivation, the desire, the push to walk forward comes eventually. It always comes.  Be patient, even though I am a Leo and patience isn’t part of that package.

I realize now that I am forging the path so that my children may not have to. Or if they do, there are guideposts along the way. New research, medicine, tools and knowledge. My footsteps and so many others’ are the landmarks that will be familiar to them as they too find their way through something unknown. It’s my way of being present on their journey, perhaps just in a different form.

Today I can report that what was in my heart, what I knew deep down to be true, was confirmed by science. We have waited for three months for a CT scan to dig deep into the body’s darkness and pray, hope, beseech, that the shadows would be lighter.  We know that the current treatment is working and things are stable and even shrinking in places. I never thought I’d be pro-shrinkage.

Much like anything we are afraid of or not ready to do, eventually, we realize that life is happening while we may be standing still. There’s no room for that when we have such a short time to be who we want to be. To be what we are to others, to bring what we have to the table. We may be the light to someone’s darkness, water to someone’s desert or the lyrics to someone’s song. No one will notice your imperfections of a flicker, a leak or a dropped note. Because you have brought the gifts to this feast, the wine to this wedding and the sunrise to this dawn.

intent: palliative

Today was first treatment day. I go back tomorrow for another ‘loading dose’ of a yummy cocktail and then every Thursday thereafter.

“Intent: Palliative” was written on my chart. When you read those words for the first time, you think you are reading the elderly lady’s file beside you by mistake.  What do you think of when you see the word palliative?  Dying? Vegetable?  Pending date with enough morphine to take a magic carpet ride forever?

I don’t know why I did not notice this four years ago – probably because I wasn’t as bold as to rummage through the nurse’s station for my chart and start snapping photos of the details (okay, there was no actual rummaging, Kara).

But seriously, there are categories for all things medical, including the patients themselves. Four years ago I was “Curative”. This meant that I was pretty much guaranteed that unless there was a fire in the chemo suite, I would have my treatment. This reminded me of a time when I overheard an employee who was trying to shuffle the chemo schedule due to a long weekend and they ran out of appointment slots. She was placing “Curative” patients first because they are the priority. They have amazing odds, after all.

I’m not a medical professional so I’m sure someone will correct me on all of this. This is merely what I heard staff discussing, and it is logical – cure the curable first. But hey – wouldn’t all patients like to believe they are curative?

At the very least, can we find a better word than palliative? What’s next? Intent: Hospice? Intent: Markey Dermody (for my out of town friends, this is a popular funeral home in Hamilton)?

I’m kidding of course but it would be nice not to see the word palliative on my file even though it technically indicates that:

“In advanced cancer, palliative treatment might help someone to live longer and to live comfortably, even if they cannot be cured.  The treatment is not limited to painkillers and anti sickness drugs. Cancer treatments can also reduce or get rid of symptoms. For example, they can help to reduce pain by shrinking a tumour and reducing pressure on nerves or surrounding tissues.”

Well here’s effing hoping.

Even though my friend Kathy and I have an agreement that neither of us will Google anything related to my diagnosis, I did look for information on these categories and particularly, the term palliative.

Now you know how much I love the Canadian Cancer Society’s website for how it connects and relates to the younger cancer crowd. It’s filled with ageing Canadians in matching Laura Ashley outfits, golfing, or gardening. Or, the super creepy shadow art direction which are newer images depicting two people, one sneaking a hand on the other, or just the hand itself on a person as in, “don’t worry, someone’s here for you, we’re just not sure whom”.

Since my occupation is a writer, I’m all about the copy. Here is one example of the comfort one can take in their web content about Palliative Care:

“Some people go back to visit places that had special meaning in their life or go on a trip they’ve wanted to take for many years. You may try to talk to or visit old friends that you have lost contact with over the years. You may want to heal a relationship that has been difficult or awkward, clear up past arguments or misunderstandings and talk about hurt feelings to find peace with someone again.”

Okay so I get that this may resonate with some people but hey CCS, people under 60 will say, “F%$K no, people. I am living my life to the fullest each day and I know who I have in my corner. And if you think the end is near, a.) it ain’t, and b.) if it were, would I seriously be doing THESE things with my thinning hourglass? Hell no.

I’m all for the trip though, so anyone wishing to sign us up for that, call me.

Here is the other awesome takeaway:
Some people find it helpful to do a life review, which means looking back on your life and perhaps talking about it with another person. This can be an important part of remembering the many ways in which your life has meaning and value. Life reviews can be hard work. They take honest and deep reflection on who you are and how you came to be that person.”

Yes, life reviews must be hard work and mighty fucking depressing. I love my life and all of the people, memories, mistakes and victories that got me here. I don’t need a Life Review because I’m still living. Christ Almighty.

I hope you found this as ironic and rediculous as I did. No offence to the hard working, good hearted people in the world of cancer but for God’s sake, take a nod from progressive organizations such as RETHINK Breast Cancer or our Hamilton gem, Wellwood. They understand their audience and provide meaningful information and tools.  None of this Great Aunt Jeannie advice and finger waging and drop the references to Palliative, please. Hire yourself a good copy team and find some synonyms for “advanced” or, at the very least, do your own Life Review and let us know how it all works out.