Epilogue… sort of

MooseNoos.com was launched on September 8, 2013. I had been diagnosed with my fourth cancer on September 3rd and all I remember from that time is being numb. Everyone was shocked – my family, my friends, the doctors, etc. It was less than 5 years since I had gotten through the last one. I wasn’t shocked or surprised. It was more like, here we go again. And I got down to the business of trying to beat it.

For the first four cancer battles, I had a little bit of control. I was always in danger but there was always at least a couple of choices – none of them good but they were choices none the less.

It was late April 2014 and I was 36 hours from double mastectomy surgery. I had fought hard for a surgery that would preserve my nipples so I would know that there would at least be part of me left that I still recognized.

Then the phone rang and my surgeon told me they had found a fifth cancer. It was another primary cancer i.e. having nothing to do with any of the others, and somehow there were cells in there that had survived 8 chemo bombs, when the one I was fighting had disappeared. My surgeon had no answers. The doctors were shocked and this time they were also afraid.

Dr. Z said, “I know how hard you have fought, I know you have been through more than anyone should have to go through, and I know how important it is to you to keep your nipples but Marianne, we have to save your life now and you have to let us”.

The next day I went to the hospital and tried to find another option. There wasn’t one. This cancer had gone undetected on a mammogram, ultrasound and MRI and part of it had survived 8 chemo bombs. The original surgery plan was scrapped and a much more aggressive one was mapped out.

When I got home and was alone, I lay on the floor and sobbed. It was the first time I had cried since I’d been diagnosed. There were no more choices. No options. No plan B. There was only the one thing that I had spent 10 years trying to prevent. I had lost. I had no control. I had been defeated. And I lay on that floor inconsolable. If I have to isolate a moment that broke me, it was that one.

As we head toward the 4-year mark since this started again, I still have another surgery to go. They’ll do it when I am ready.

The next time I was on the floor sobbing was November 2015. And yes, I was broken. I thought I was going to die from the terror, the fear, the pain. I reached for the phone and called Dr. L, my therapist and trauma expert of the past. I, of course, had been trying to white knuckle through all my feelings alone. She talked me off the floor and into her office.

I’ve been there twice a week ever since. I was in full PTSD. All my docs were on alert and making sure nothing had to happen that might trigger me. I was filled with shame, anger, despair that I couldn’t just get over all this and get back to living my life.

It has been excruciating. Dr L. told me it was going to get worse before it got better and started many sentences with, “you are not going to like what I have to say…” There were days I couldn’t get there because of anxiety and she would be on the phone ordering me to take the medication they had given me. I was always trying to tough it out. My place was and still is a mess, on purpose. It’s my fortress. I can keep people out of it if it’s this messy and so I have a safe haven.

Dr. L explained it all to me. I’d experienced too much trauma and it was not just the cancer but other events in my life and the trauma just kept coming. It was relentless. I was embarrassed. It felt ridiculous to still be talking about me and whatever “catastrophe” was going on. I felt like I needed to explain it all in every conversation and later, I’d berate myself for not just keeping quiet. Everyone had had enough of listening to me trying to explain or relive it all, over and over and over again. And I kept thinking that people must think I was inventing stuff to keep up the drama.

My father approached me one day and asked if he could come with me to see Dr. L. He was trying to understand the PTSD. So off we went one Friday afternoon. My father had some concerns that were hard to hear and hard to answer. Dr. L. let him talk for a while and then she stopped him. Here’s what I remember her saying:

“Marianne is the most resilient person I know. But she has also been subjected to an enormous amount of trauma – the multiple diagnoses and many other traumas. Each time there is another incident, all the past traumas rise up and attach themselves to the new trauma. Trauma is magnetic and gets magnified. And it gets worse over time. Marianne did not create the PTSD. She does not have it because she was not tough enough. And it’s not something she can just be optimistic about and it will be solved. You need to understand that PTSD is about wounds that are created by the repeated traumas. We are just starting to research PTSD with people who survive cancer but what has happened to her is mostly physical. Her brain has rewired itself. It’s trying to protect her. And yet there are triggers in there, some we know about and most we don’t and won’t until they get triggered. And her body has been wounded. It’s like she has been shot and her body is filled with little bombs and we have no idea where they are in her body or when any of them are going to go off. This is something she is going to have for the rest of her life. You don’t get cured from this. What we do is work on managing it. And I know you would do anything for your daughter but you cannot fix this. No one can. We are getting there, but you are going to have to listen to her and accept that sometimes she won’t be able to do what you want her or expect her to do. And you are going to have to understand that right now “hope” feels like the most dangerous thing in the world”.

When we left, my father was stunned. He said that he had had absolutely no idea what was going on and that now that he did, he felt bad that it was worse than he thought but also better that he now had a fuller understanding of what I was dealing with.

It went so well that I asked my mother if she would come with me too. And she did. Dr. L. basically said the same things and then added that she needed to give me more space. Taking them both and having a professional explain it was one of the best things I’ve done in a while. It doesn’t hurt that Dr. L is the best.

So you understand what it’s like, it can be a slow rise of anxiety that will then tip me over into a full-blown attack. Or when a physical trigger gets thrown, it is usually immediate and severe. It’s not an anxiety attack. It’s a PTSD episode and they are different. For one, I need to be on the floor, I try and wedge myself into the smallest space and I can’t stand to be touched. I lose sense of time. And I can’t tell you what was terrifying, I just know it is the most terrorized I have ever been.

As an example, I was writing one day about getting diagnosed with breast cancer for the first time. I got through ¾ of a page and realized that my left hand was shaking so much I couldn’t type. I grabbed it with my right hand to still it. But it kept shaking and then I was instantly over the edge. I was on the floor, curled up under my desk, my heart was racing, my skin was clammy, my breath was very shallow, I was shaking uncontrollably and I was in a place of pure terror. I don’t know how long I was on the ground, eventually it subsides but it takes a couple of days before the anxiety goes back to a manageable level.

I couldn’t understand what had triggered it. As you all know I write and talk about cancer all the time with no problems. I took what I had written and described it all to Dr. L. She read what I had written and said, “This is much more emotive than what you usually write. What happened was your body got triggered. I will bet you anything that your left hand that was shaking is the hand that found the lump that you describe in this writing”. It was.

Dr. L and I disagree, sometimes I am stubborn and very vocal in my disagreement, sometimes all I can do is cry for an hour, sometimes I throw a mean pity party, other times she will take me down a path where I suddenly see exactly what I have been doing subconsciously that has sabotaged parts of my life. Those moments are unusually devastating because you can look back and see how bad you messed up your life. No one to blame but yourself. They rarely have much to do with cancer but as Dr. L keeps telling me the multiple cancer diagnosis masked a lot that I would have figured out earlier if I wasn’t always dealing with being sick.

None of this affects the main parts of my life. You’d never know any of this was happening. I’ve kept working. The structure of work is good for me. Travel is great. It transports me to a place where there is less of a chance that I will get triggered. For obvious reasons, I feel safest with people who have known me since before I ever had cancer. I can get anxious but I’ve never had a full-blown attack outside of my home or Dr. L.’s office.

For a very long time, I had a constant longing to lie down in the dirt at the bottom of a hole, lay my cheek against the damp soil and curl my fingers into the earth. I just wanted to do that and stay there. I thought it was the only place I’d ever feel safe. It was the only place where the rug could not be pulled out from underneath me. That feeling is slowly subsiding. I haven’t had a major attack in a month. I’m leaving my apartment more and I’m very slowly working on restoring some order to the chaos. I’m still isolating myself too much and my feelings get crushed easily but one step at a time.

I am the luckiest girl alive to be sitting here writing this very long blog post. I know that. At the same time, I have finally gotten to the place where I can say that surviving does come with its own set of challenges. They can be pretty huge and messy and they can last a very long time. They are also what nobody talks about and so there are many survivors out there who are struggling inside while they wear a smile on the outside. And they may still need to talk about cancer things years after they were treated. Mostly they need to know they are not alone and they are not crazy. I’m going to leave this blog up because if it can be of help to anyone coming after me, then it’s all been worth it.

I’m working on the emotional debris that surrounds me but it is more of a puddle than a pond now and doesn’t threaten to drown me anymore. I’m starting to appreciate the resilience that Dr. L keeps talking about. I can separate who I am from the feelings that happen in my body and have accepted that it’s not my fault. I’m working hard at being able to look at my scars and accept them instead of letting them devastate me. It’s hard to separate them from that moment that broke me. I still feel things very deeply and my feelings get hurt too easily. I’m changed and still the same. In fact, I am probably more myself than I have been in a very, very long time. Mostly I know that I will be ok, no matter what happens from here.

So this is where I leave you. It’s time. I’ll never be able to adequately express my gratitude to all of you who have followed this blog and supported me in so many ways. That’s what makes me sob these days – the enormous amount of love that surrounds me always and just took me a little while to see and feel. I’m good. I’m not in some kind of race toward an ending to all this. There is no ending but there is a lessening, a subsiding. I’m looking forward and not back. My shadow will always be there but I’m not letting it hold me still any more. I don’t know what lies ahead but right this very moment, the sun is shining, there is a light wind coming in through the window, I can hear the leaves rustling in the trees, and I’m feeling happy to be part of this big, crazy, complicated, wondrous, and beautiful world. Right now, it’s ok to just be in this moment.

xo M.

Question of the Day

I wish I could live in Facebook or Instagram. I would squeeze myself into everyone’s beautiful worlds. I would put my arms around a bunch of kids and pretend they were mine. I would slip into the arms of a handsome husband. I would travel all over and have all these amazing experiences. Most mornings, I scroll through social media and I wish I was in every picture. Ok, most pictures. I don’t need to be in the one with the snake in the tree.

Our best lives are on our social media streams. We work on witty tags. We pose for selfies. And when an incredible moment happens, we reach for a camera attached to any number of technological tools. Then we post. And we count the likes. I do it all the time.

It’s been a very tough summer. Why is not important. Don’t worry – I’m more healthy than less healthy so all is good on that front.

There has been a lot of time to think, which is not always a good thing. No one can spin and go in circles in their head like I can. I’m sooooo sensitive that my feelings are like bubbles that float around me and with one touch explode, wounding me deeply. I’ll never let you see it, you’ll have no idea that my feelings have been hurt. It’s rarely intentional. I need to grow some tougher skin. The irony is not lost on me. You would all describe me as tough and yet I’m the least tough person out there.

For years, the same question keeps running through my head. Checking my social feeds this morning, I thought, I know everyone’s life is not like this all the time, probably not even most of the time. I know that anyone who is reading this post has been knocked around by life. You’ve been sick, you’ve lost someone you love, you’ve had a sick child, a sick spouse, you’ve lost everything and had to start from scratch, you’ve been through a divorce, you’ve lost a parent, you’ve been in an accident. The point is that everyone gets hit with stuff that knocks them to their knees, where their breath seems to fail them, where everything changes in a moment.

So back to the question. How do you heal? I’m not talking about how you get better or feel better, I’m talking about how you heal.

The dictionary defines better as improve. Heal come from the Old English word “hāl” which means whole. Heal is defined as “to become whole”. These are two very different things. Getting better feels much easier than healing.

A doctor who introduced a new program for palliative care in an American hospital was interviewed and said, “Not everything can be cured, but everything can be healed.” The journalist didn’t ask the follow-up question about how you actually do the healing. I want that instruction booklet!

I know there are many practises out there that are described as healing practises – meditation, acupuncture, reiki, energy cleansing, therapy, support groups etc. They have never been healing for me. They have sometimes made me feel better and often made me feel like I was in control of some small part of what was going on. Healing has remained elusive.

So my question remains unanswered. I feel like I should have figured this out by now. And I’m not just talking about a physical illness. How do you heal when you get dumped, when you get fired, when you get humiliated, when you get abandoned by a friend you thought would always be there for you, when you have to move when you don’t want to, when you lose your home, when you get victimized, when that thing that happened years ago still hurts.

I know this is a big messy, complex question. And it’s hard to ignore that so much healing is needed everywhere, for things big and small. So I am seriously asking this questions to anyone who is reading this. How do you heal? Is there something that made you whole again? Can you define it? How did you figure it out?

The word I hate the most in the English language is “fine”. And yet I use it all the time. Fine is your camouflage word. Fine is not a state of being. Fine is what you say because it’s a question we ask by rote and everyone really does just want to hear “fine”. “Fine” is what you hide your true feelings behind.

It is so interesting that we all have these terrible moments, that we all have times we think we won’t survive, we all get swept up in sadness and we all deal with shame, fear and insecurities. The good and happy times bring us together. But when the tough times move in they can often isolate us at a time when we need each other the most.

We use work, family, general busy-ness to try and ignore it. That will work for a while, it can work for a long time, but at some point I bet you are going to be faced with the feeling that you are not yet healed and will have to face that fact and figure out how to do it.

So I’m throwing it out there. How have you healed? What has made you feel whole again? I’m very serious and I’m very interested. You don’t have to post your answer anywhere public, and if it’s too hard to share with me than don’t do it. I’m not going to reveal anyone’s secrets. I’m just very interested in your answer to the question. And if you haven’t figured it out yet than tell me that. My email address is moore.marianne@gmail.com.

Think about it. It’s not the thing that got you back up off your knees; it’s the thing that healed the hole that was created inside you when you were wounded.

And please keep up the social posts. They are funny, touching, loving, exciting, and beautiful. The beauty in life should always be celebrated.

Thanks in advance to anyone who feels moved to send me their thoughts.

And so I leave this post on a funny, high note, here’s a joke. I’ve put myself in the joke.

“Marianne was moving to a new city and knew she would have to find a new doctor. Being so organized and meticulous, Marianne had a very comprehensive summary of her medical history. On her first visit, she shared it with her new doctor. After browsing through the extensive medical history report Marianne had given her, the doctor looked at Marianne for a bit and then said, “Well there is one thing I can say for sure, you look a lot better in person than you do on paper!”

C’mon! That was pretty good!!

Going to sit in the sun.

xo M.

 

A Letter to My Younger Self

Dear Marianne,

I know how awful you feel. How weak, nauseous, dizzy. I know that every cell in your body is hurting. Today, Marianne, is the last day of your treatments for this insidious disease.

Get ready because your mother is going to throw you a surprise party tonight. It’s because she loves you so much. It’s because the last months have been excruciating for her and all those that love you. You haven’t been able to see their struggle because the sheer effort of making it through every day has blinded you to anything else. You aren’t going to last very long at the party and you will lie in your bed listening to everyone celebrating the end of your ordeal while tears streak down your cheeks and you wonder why you don’t feel as happy, as relieved, or anywhere as close to it all being over as everyone else does.

Grad pic 4Hold on, little one. Breathe. Lie back and let go so your body can do what it is supposed to do. It needs to heal and it will, even if you can’t believe that right now. In a few months, you’ll be packing for university and moving out on your own into a brand new phase of your life.

I wish I could reach back through time and lie down beside you, hold your hand, soothe your pain and whisper words of comfort and love in your ear.

I would tell you about the new friends you are going to make, the amazing adventures to come, the loves and the heartbreaks that await, the work you will excel at, the places you will live and that there will be so many moments where joy swells inside you and laughter erupts from your belly. I would tell you that life is going to really suck sometimes and that everything you need to survive the tough times is already inside you. I would tell you to keep dreaming big and to let those dreams pull you forward

I would not tell you that cancer is going to come for you again, and again, and again. And then another time again. I would not tell you that as bad as you feel now, there is much worse to come. I would not tell you that your body will be filled with toxic poisons that will bring you to your knees, that they are not finished burning through your skin, and that they are going to carve you up and leave your body riddled with scars, visible and invisible, that will bear witness to what it will have taken to get through the battlefield that has been more than 60% of your life.

If I told you all that you would never get out of bed again and you’d live in fear, holding your breath until the next hit knocked you over. It’s going to be hard enough with the all the check-ups, the almost yearly scares that the disease is back, the weakened lungs and the paralyzing fear that you are a freak because you can’t always be ridiculously happy to be alive. It will be hard to watch your father get diagnosed three times. It will be hard to hear that the doctors have become more concerned about treatment cancers than the one they originally treated. It will be hard to learn that inscribed in your genetic code is some yet unknown flaw that creates a window for this disease to keep coming for you.

You don’t need to know that your doctors will never let you have children, despite how hard you push the limits of medicine and demand that this dream be kept intact. You don’t need to know that the seeds of a disease you have studied in school and that is normally attributed to veterans has already started to grow inside you. You don’t need to know that you will watch a woman sitting next to you in chemo die in front of you, even as the same drug is pumped into both of your veins. You don’t need to know that you will have to watch your sister go through cancer too and feel the impotency of a caregiver. You don’t need to know that the day is going to come when your doctors look at you and say, “Marianne, there are now no other options. You just have to let us do what we need to do to save your life.” And you will let them take over, even as you know that you may never forgive yourself or be at peace with it.

None of that is important right now. What you need to hear as you lie there, not yet an adult but more than a child, wondering if you will ever feel better, is that yes, you will. I would tell you how resilient you are. I would tell you that you are capable, smart, strong and yes, brave, and that none of that is a result of having had cancer. I would tell you that all of that has always been inside of you and only came into focus when you needed it so desperately. I would tell you that you don’t need to keep telling everyone you meet that you had cancer because you believe that cancer is the thing that makes you visible in your own life. I would tell you that you can tell anyone whenever you want but that you have never, ever been invisible and that you couldn’t be if you tried. I would tell you that it’s in the understanding and trusting of your own strength that you will find hope again. I would tell you that the importance of dreams is not that they come true but that you never stop dreaming them. I would tell you that all of you is worthy of love and should not settle for anyone who shows up offering you less than you deserve.

Life is a journey and there isn’t an instruction booklet, any sneak peaks, or fast and easy detours. Only you can live your life. Only you can grow into enough courage to look at your faults straight on, take control of them, work on them and understand that you are doing the very best you can and that that is enough. Only you will be able to write your own story and that won’t be possible until you own your story and yourself and feel proud of the person you are, love the person you are.

Let’s get real. If I could I would write you up a list of steps to take and things to avoid. We should start with the bangs! No bangs. Ever. I would tell you to walk away from the guy who was in “love” with you when he was really in love with his image of who he thought you should be. I would tell you to pay attention to the signs about that job opportunity and who is offering it to you, and that you don’t have to just take what is offered you because you think you are deserving of no more. I would tell you that you will never, ever regret a trip you take and that you should take more. I would tell you that you don’t need to look after everyone else and to always make sure that you put yourself at the top of your own todo list. And I would tell you that no possession can ever be worth more than just being yourself.

I would tell you that sometimes things are going to very hard. I would tell you that your feelings are going to get hurt, that you will apologize too often, that you are going to experience humiliation, that you are going to be overcome with sadness sometimes, that you are going to question everything, and that all of that is okay because, even if you think you are the only one who has ever had these feelings, you’re not. I would tell you that you should never ever let a man demean you, silence your voice, or undermine your work just because he’s a little threatened by you. That’s his problem not yours. I would tell you that when you finally decide to risk it and fall in love with someone you have trusted forever, he is going to lie to you, hurt you, and then walk away like you never existed. The hurt will never fully go away, but at least you will have tried and you will survive. I would tell you that you are going to experience physical pain like you still can’t yet imagine and then recover. Over and over and over again. I would tell you there are good friends who are going to disappoint you and that you will disappoint some of them and that all of you will get through it whether you remain friends or not.

Marianne, you are going to screw things up so badly! You are going to berate yourself and throw yourself a lot of pity parties. You are going to get some terrible haircuts, (bangs are just the beginning of it,) buy some hideous outfits, grow a big zit on pretty much every day you prayed you wouldn’t, and you are going to make a lot of truly terrible decisions. You are going to be too independent, work at fitting in too hard, build too many fortresses, try too many times to be what you think others want instead of yourself, and spend too much time trying to figure out why you can’t see yourself the way everyone else does.

As you lie there, what I wish I could tell you most is not that there are hard times to come and that you will get through them. I would tell you that sometimes the hardships we survive eclipse the moments that make getting through them worthwhile. I wish I could tell you to pay attention because you will find the fullness and joy of life when you least expect it, when you take chances, when you stay in the moment and when you are most yourself.

You’ll find it in the wind through your hair as you lead a bunch of travellers down a great hill in Burgundy on your bike. You’ll find it in the lasting and meaningful friendships that will be forged in wine caves in Beaune and in the Cognac chais of Hennessy. You’ll find it when you tell those lungs that they can try to be a problem but that no matter how long it takes, you are getting to the top of the Deeks Lake hike, the volcano in Bali and the rocky outcrop of a huge hill in Tanzania. You will find it in letting a guy pick you up in a bar because your gut says this one could be a keeper. You’ll find it in a most important friendship that is made with someone you don’t even know yet, when that guy from the bar decides, two years later, that you’re not a keeper. You’ll find it every time you go home to France and are restored by a place that belongs to you as much as you belong to it. You’ll find it in the silky feel of cool water on your hot skin when you skinny dip before bed on sweltering, Canadian summer nights and you’ll find it in the burn in your thighs as you ski peak to valley without stopping at the end of perfect days of skiing. You’ll find it when you pack everything up and follow your dreams and move to LA. You’ll find it when you go back to school and finally see what you are truly capable of reflected in your marks. You’ll find it on California beaches, in game nights that are delightfully out of control and in dumping warm laundry on your friends’ son as he giggles uncontrollably. You’ll find it in the ardent, full kisses of the boys you will love and in the teasing that can only come from friends who have known you from before you knew yourself. You will find it everywhere. And yes, you will be surprised that you will even find it in the middle of those times that you don’t think you’ll survive. You’ll find it in so many unexpected moments, moments that will bring tears of joy, guffaws of laughter and swells of emotion. And you will treasure every one.

But for now, Marianne, just hold on. Be kind to yourself. I know you are afraid because you have lost sight of the future you just assumed you would have. I know that hope feels like the most dangerous thing in the world. I know that you feel crazy and broken and spent. As you lie in that bed, despairing and letting your fear dampen your pillowcase, you only need to know this: You are going to live. You are going to keep breathing. You are going to feel healthy again. You are going to fight back and get through things you can’t yet imagine. You are going to kick some serious ass. You don’t quit, you don’t give up, and when you need to fight, you show up, a fierce army of one.

Sleep now. Let your tired body sink into the softness of your bed. Tonight, you need to lay down your weapons, ease up on your fight. This one is won. Remember that you are more than a fighter. There is gentleness, vulnerability, sensitivity and kindness in you and you are going to have to learn to lead with those, even though your experience is going to tell you to keep fighting. Put your head on the pillow and know that you are safe, you are loved, you are more than enough, you are special and you are never alone.

Sweet dreams. Tomorrow your boyfriend is going to wake you with a handful of roses and a cake he baked himself. Treasure these moments. Take them in. Let them touch your soul. They are and always will be what you fight for and they are worth the battles.

With unending love and a promise to always show up for us,

xo Me