Frostbite

Sitting at a birthday luncheon for a friend in London, England, yesterday, I was talking to a woman I had just met and who because of mutual friends had knowledge of the fact that I’d just come through my latest cancer battle. Her very first question to me was, “How is your head?”

She didn’t mean physically, she was in essence asking me the question you so rarely get asked – how was I was doing emotionally. My first reaction was to thank her for her question and tell her that I almost never get asked that. And then I said, “I’m trying to figure out how to heal my head. And my spirit and soul. It’s the biggest question I have now; how do we heal those parts of us that don’t show visible scars, that don’t show obviously signs of trauma, that don’t display wounds the way the body does?”

My doctors all warned me as the end of active treatment approached that I was going into one of the toughest times. It was something I already knew.

What I didn’t expect was my frustration and annoyance at myself. After all, I reasoned, this isn’t your first rodeo, you should know how to get through this part. You’ve done it before. And yet, I was instantly lost, depressed and afraid and I had no idea what to do next.

I knew that I was starting from scratch and that nothing that I had done or used before to get me through this time was going to work again. I knew I was going to have to dig deeper and I knew that I was trying to heal more than the latest cancer experience.

For more than 6 years I had been numbing myself. I numbed myself with the first breast cancer diagnosis. I numbed myself when I finally had to face the reality that I was going to have to give up my life in LA. I numbed myself when my heart got painfully broken in a way that I didn’t know it could be broken by someone I trusted more than anyone. I numbed myself through my first 3½ years of being back in Toronto. I numbed myself when I received the new diagnosis and all through the subsequent physical battle. I numbed myself with every curveball that life threw at me. I am an expert at numbing myself.

I worked. All the time. I isolated myself. I put up barriers and I stayed numb.

Most of the time, for people who did not know me well enough, I acted happy enough to not raise alarm bells, while others just retreated, taking my constant rebuttals personally. Who can blame them? Certainly not me.

I wish I could tell you that numbing yourself is hard. The truth is it’s not. I didn’t need drugs or alcohol or any other substances. I learned long ago how to numb myself. It was part of what my body just did naturally to get me through traumatic events that just kept coming.

So here I am. I am on the other side of this last cancer battle, without work to bury myself in and no other distractions to hide behind.

I know that few people understand this. Most think that this should be when I am the happiest. I did it. Again. I slayed the cancer dragon and I came out on top. I should wake up with a smile on my face and a kick in my step. I am, after all, one of the lucky ones. Every one of of the people this disease took down wish they were in my place. I know that I am part of a very fortunate group.

But here’s the thing, the thing so many people on the other side of trauma are afraid to say or to speak of for fear of being seen as ungrateful or melodramatic or self-pitying. So many of us don’t talk about this part of the battle because it seems almost disrespectful to those who didn’t make when really it is just dishonest to not talk about it.

For so long there were not enough cancer survivors living long enough for anyone to become aware of the after treatment challenges. But we are growing in number and this is something that needs to be talked about.

In 2011, the Journal of Clinical Oncology published the results of a study called “Post-traumatic stress symptoms in long-term non-Hodgkin’s lymphoma survivors: does time heal?” They studied a total of 566 individuals with a median of 12.9 years since diagnosis. Their conclusion? More than one-third of long-term NHL survivors experience persisting or worsening PTSD symptoms. Childhood cancer survivors, survivors of aggressive cancers and cancers that require intense treatments where shown to have increased risks of PTSD developing. And recently the official definition of PTSD was changed to include a cancer diagnosis as a causational factor.

What is also being recognized is that while we have decades of research on PTSD, going back to the days of “shell shock” in WWI, cancer presents a variation that complicates existing PTSD treatment. In most cases of PTSD, you can remove the affected from the stressors that brought on the PTSD in the first place; take the soldier out of the battlefield, provide safety to victims of abuse, etc. But the stressors for cancer related PTSD are your body, the treatment and the doctors. Those are things that cannot be removed from someone with cancer’s life. A significant number of survivors will avoid follow up tests and doctors’ appointments because the stress and anxiety are too much to bear which puts them at increased risk of a potential reoccurrence not being caught soon enough to be treated, making the very thing they need to keep surviving, the thing they cannot do. Different treatments and approaches to cancer related PTSD are going to have to be developed that address the fact that our stressors cannot be removed from our lives.

It was validating to ready this study. It was validating to know that I am not alone. With so many illnesses, follow up and rehab programs have been developed. But with cancer there is little. You are just a lucky one and you should be happy to be alive. If only it were that simple. As a friend who has been in remission for more than a decade said to me recently when I sought her out to ask how she had healed, “I’m still working on it. But it’s hard. It’s not like I can go to lunch with my friends and when they ask how I am say, “I’m still kind of dealing with this cancer stuff.” For them it is so over and they have no idea what I am talking about.”

I am happy to be alive. I deeply miss and will always fight for my friends who, for reasons no one can make sense of, did not make it. But I think it’s also time to let go of the shame about not living up to an unrealistic expectation of survivor joy just because we did not die. To speak this truth out loud does not dishonour those who cancer took away from us. To not speak this truth out loud just means that a good number of survivors will continue to silently suffer and feel isolated, thinking themselves alone with their emotions and feeling ashamed that they aren’t living up to a fairy tale survivor myth.

I am wounded, traumatized, hurt, scared, humiliated, sad, embarrassed, scarred and heart broken.  So right now my focus is on one question – how do we heal, really heal, our hearts, our souls, our spirits, our whole selves when they’ve been broken, not just by cancer but by any number of traumatic events that come our way in life?

So I’m on a bit of a quest. It’s not mapped out or formalized. But I am paying attention and I am going to write about if for no other reason than I know I am not alone in trying to find the answer to this question.

What I do know is that nothing in my life is going to change, or work, or be fulfilling until I can not only answer the question to take the actions needed to get me to a more healed state. And as I figure out how to heal, I have to stop numbing. I know that numbing is a choice. I’m not alone in having chosen it. There are people who numb their way through their lives for far less dramatic reasons than a cancer diagnosis. I was one of those people. I just don’t want to be one of those people anymore.

Numbing is like being frostbitten. You freeze quickly, lose circulation, and when you finally get to a place where you can warm up, it hurts like hell and takes a lot longer than the initial freezing did. But if you don’t thaw out your frostbitten bits, they have to be amputated. I don’t want to have to lose my heart, my soul, my spirit. I did not fight as hard as I have to get on the other side of all this life crap to just zombie walk my way through the rest of my life.

I want to feel – as bad as it is going to be sometimes. I want to take control of my life and make some different choices, go down some different roads but most of all I want to find the true me, love her, nurture her, and inspire her to start living her life fully and openly, with a confidence that will make numbing unnecessary.

And so I’m trying to live that question right now because living my way to the answer is the only way I’m going to get there.

I started working on this in January but only now feel like I can start to write about it. It’s been an interesting journey so far and I expect that that is going to continue.

So as I work away at this question, I will continue to try to un-thaw. As a child and an avid skier, I was frequently getting frostbite. My mother used to stand at the bottom of the ski hills trying to catch me as I sped by and drag me into the chalet to warm me up. She would haul me into the woman’s bathroom, strip me down and sit me in one of the sinks filled with tepid water as she gently tried to get the blood flowing back to the front of my legs, torso, arms cheeks, fingers and toes. I would sob and sob at the burning prickly pain of feeling returning. But half an hour later I would be back on the hills.

In so many ways, I’m metaphorically back in that bathroom sink, enduring the pain of feeling returning to my body. There has been much sobbing and there is still more to come. And I will figure out my own answer to that question of how to heal. It’s the only way to get back on the slopes where I can be free, alive, and loving what I do and who I am.

xo

M.

Lions And Lambs

Cancer usually roars into your life, creating terror, upheaval and destruction. But true to the adage, it tends to bleat softly as it exits.

Truth be told, it never really exits, but there does come a day when the doctor says, “OK. See you in three months. We’re done with treatment. Now we wait and see.” And you are set free from the daily rituals of trying to survive.

The last three months have been full of upheavals and losses. There have been abrupt, cruel and unexplained endings but there have also been moments of great triumphs that signalled the possibility of new beginnings like spring crocuses pushing through the last snows.

In the midst of one of those upheavals, on December 2nd, I got a call from my reconstructive surgeon. She was 8 ½ months pregnant and because of a bunch of factors was having to delay my surgery until March when she would come back from maternity leave just to tend to a few clients, including me. But when she had seen me a few days earlier, she took one look at me and said, “I’m going to try and get you in before I have this baby. You’ve had enough. We need to end this for you and we need to do that as soon as possible.” The tissue expanders in my chest were a constant source of pain and discomfort and I desperately wanted them out, but I knew it was far from a sure thing and so I only told one person of the possibility of the surgery being moved up. As the days went by I resigned myself to the fact that it just wasn’t going to happen. Until it did.

When I picked up the phone the first Tuesday in December, all I heard was, “Marianne, can you be ready for surgery on Monday?” The Monday that was 6 days away. An enormous sob escaped from me and was apparently answer enough.

December 8th had me at the hospital at 5am, where my favourite surgical nurse, Claudia, was waiting. I was first up and was quickly getting wheeled into surgery. And then it all went black.

My next memory is of the recovery room. They were getting ready to move me back upstairs and as the door opened to the hall, I could see my mother and sisters. Back in my room I faded in and out. When I was able to open my eyes for longer than a few minutes, it was just my sister Jenny with me. She was sitting quietly next to me and she just said, “What do you want to do? What do you need?” I croaked that I wanted to go home. And Jenny knew exactly what to do to get me to the point where they would release me. A few hours later, my sister helped me into her car and brought me home. My niece Ruby showed up minutes later to help look after me and stay the night.

I once again had 2 drains sticking out of either side of me and once I was able to take stock of my body, noticed that I had 11 different incisions – 7 were made in my legs and hips to liposuction fat out of me to pad the permanent inserts that had been put in as the tissue expanders came out. By morning it looked like someone had taken a metal bat to my legs and I had big divots in the sides of my legs. As I slipped out of my PJs, I caught my first look at my new boobs and cleavage. With just bandages over the new incision, I could already see my new shape. My sister Amy appeared in the doorway and we both took a good look. “I think they look okay,” I said, cautiously optimistic. Amy said, “Dr. Z said she was very happy with them and that she thought that even you would admit they looked pretty good.” And then, just to make sure that I stated the obvious, I looked at Amy and said, “Things have been restored to their natural order. My boobs are once again bigger than yours.” She had to agree I was right.

I am not a good a patient. This time I did not wait for the drains to come out – what should have been 5 days stretched to more than 2 weeks. I tucked the pouches that catch the fluid coming out of you into the sides of my jeans, taped down the tubing and put on bulky sweaters and drove my car, all things I was not supposed to be doing. But I was fed up with being cooped up and doped up. On December 23rd, I made the home care nurse take them out, telling her that all I wanted for Christmas was to be free from tubes.

A few weeks later, I was back in Dr. Z’s office, the day before her official due date. She took off the bandages and I could see by her expression that she was pleased. This time I didn’t hesitate. I stood up and we both stood looking at me in the mirror. I was stunned. True to her word, Dr. Z had cut out the ugly, stretched and jagged scars and in their place were thin curves that already looked better than what had been there the day before this last surgery. My relief was palpable and Dr. Z was clearly happy with the outcome.

Dr. Z then said, “Wow, you are a good healer. You are perfect for plastic surgery. You are so fair and so pale and these scars are going to fade away to thin, white lines.” The she added, “OK. Now you need to massage the scars everyday, twice a day for ten minutes each time. This will help with the healing and it will help reduce the formation of scar tissue. In another month, I  want you to start massaging each breast entirely so that you continue to loosen the skin, let them fall naturally and keep scar tissue at bay. You’ll find they become more pliable.” And then she said, “I’ll see you in August.” I choked out a tear filled thank you and wished her good luck with the baby. And then she was gone.

Ten minutes a day seemed like no problem to me. Until that night when I diligently set the timer, poured the healing oil into my hands and started to knead the scars. Three minutes in and I was done. Ten minutes is long time! My fingers ached. Who needs home care nursing to change bandages? They should be sending them for scar massages! I have tried to be diligent but honestly, it is a lot of work! So good thing I’m a good healer.

The scars are still long and very noticeable. And my boobs are a completely different shape than what I had even though they still look like real boobs and so much better than the tissue expanders did. Dr. Z was right all along. I can already see the scars fading and while they will never completely disappear, it feels like one day I won’t just see what is gone and will be able to see what remains.

There is still a little more work to do. There will be more liposuction to plump up the skin around my cleavage and maybe some other tweaks but for now I am so happy to have the tissue expanders out of me and slowly but surely I am getting used to my new rack.

With the last big surgery behind me there remained one more thing to wrap up. I needed to finish my chemo light (Herceptin) treatments. For most of the last 8 months, it has been my father who would quietly accompany me, late on Friday afternoons, for my treatments. My father has never been there for any of the bell ringing ceremonies, so I asked him if he alone would take me to my last, and I do mean last, chemo treatment, scheduled for January 5th.

Jeannie, one of my two favourite nurses, was ready for me. Michael, my other favourite, had left a note in my file that was delivered to me when I checked in. Across the chemo ward, I knew almost every chemo nurse and they all knew me.Last 1My father, who usually sits quietly with me or reads me poetry was downright giddy. At one point he got up and chased Jeannie down, returning with a red marker. He leaned in close and wrote “Last 1” on my forehead, causing everyone to laugh. But then I saw that he had used a permanent marker and Jeannie was once again sent scurrying to find alcohol wipes to get the writing off my forehead as my father laughed and said, “Let’s just leave it!”

Soon the pump dinged and after a quick IV flush, the needle was withdrawn and my arm wrapped up. Jeannie, and a bunch of other chemo nurses who have treated me in the last 18 months as well as a few who treated me 5-6Me & Dad years ago, followed us to the bell. I posed with my father, both of us with huge grins on our faces, and then he stepped away and Jeannie got the camera ready and I started to ring that bell with everything I had. And then it happened again. I broke the bell. I broke the bravery bell.

Laughter exploded all around me. I was at first horrified and then laughing and then intently trying to fix it. Again!! I tried to get the crowd that surrounded me to admit that bell breaking happens all the time but they steadfastly stuck to their story that I was the only person who had ever broken it, not once but now twice.

I then hugged them all. And I thanked them. Each of them had a role in saving me, in helping me, in looking after me, in supporting me and in making me feel cared for. Each of them had played a role in earning me yet another reprieve from an illness that does not yet grant enough of them.

And then there was just Jeannie left. I turned to her and we hugged each other tightly. I was crying now and I struggled to croak out a thank you. Jeannie brought her mouth to my ear and whispered, “Listen to me. You need to leave now. And doBreaking the belln’t you ever come back. We all love you, but don’t you ever come back, do you hear me. Not ever. Not even for a visit. I mean it. Walk out this door and go live your life.” And then she released me and pushed me towards my father and the exit.

Just like that it was over. 15 months and 3 days from the day I started, my chemo treatments were all over. In like a lion, out like a lamb.

A month ago, I could not walk more than a few blocks. Last week I did two 7 km hikes through the ravines near my house. My appetite is still not back and there are lots of other little complaints but physically my body is starting to understand that there might not be another hit coming. My cells are tentatively starting to rally, cautious still but eternally optimistic. Once again, I am awed by the physical body and its ability to heal.

But with every ending there is a new beginning. As my body starts to heal, the barriers I’ve had up to seal off my feelings so I could actually get through the physical battle are starting to fray. The nightmares come all the time now. Tears too. I am impatient and desperately want to skip this part of the recovery process even as I know that healing the emotional scars is as important, if not more important, than healing the physical ones. And there are no short cuts.

And so begins another journey. The good news is that I am no longer working, no longer employed. Even better news is that for the next while I’m going to focus just on me and how to rebuild a better life for myself than the one I am leaving behind. Even in my hurry to be done with all of this, there is a little voice that gets louder every day, and it’s excited. Time for a reboot, a reinvention, and this time I’m not messing around. So stay tuned, because if you’ve made it this far with me through all the tough stuff, you don’t want to pull the plug just as it starts to get good. I’m starting a new phase and to help figure out what comes next, I’m going to do a lot of fun and cool stuff that will hopefully get me to a place I long ago gave up on.

So to launch this new time, to launch this healing journey and my life reboot, I am going to Mexico, to the Mayan Riviera, for 12 days, with 15 books and 6 swimsuits, some sunscreen and a big hat and some bubble bath. And unlimited margaritas. I can promise that I’m sure that this is how I need to start – away, somewhere warm, on my own, with a lot of time and space to feel, think and plan. What I cannot promise is that there won’t be a few hilarious drunk selfies. But really, I’m long overdue on drunk selfies!

¡Arriba, abajo, al centro, pa’ dentro!

xo Marianne

Out With The Old…

Normally I hate New Year’s Eve but this year I may just be the happiest person alive to say goodbye to 2014 and hello to 2015. There is much to tell, but for now what I can say is that 2014 was easily the hardest year of my life. And every time I thought things might be getting better, they got worse.

I sit here on New Year’s Eve and I am happy to send 2014 packing. Elated. My only resolution is to keep going and to always pick myself up when I get knocked down. If I have learned nothing else this year, I have learned that you can only go forward and no matter how many times things have brought me to my knees, I have to believe that from all of it I will grow, I will learn and I will get to a better place.

Know that I am ok and as healthy as I can be for someone who has been in cancer treatments for 16 months (I really need to start over-achieving in another area of life!) with more still to go. I know how lucky I am for that alone. And I am grateful beyond measure to still be here, ready to wipe the slate clean on this last year and start a new year with clear eyes and a full heart – yup, Friday Night Lights reference, (Clear eyes, full heart, can’t lose!)

I am lucky also in the enormous amount of love and support that have come my way this year and before. Sometimes, when we are betrayed, or someone intentionally tries to humiliate or degrade us, or life throws us yet another curve ball, the pain is so shocking and devastating that we forget about all the kindness, love and support we have been shown along the way in far less dramatic fashion. But as the sun sets on this year, I am choosing to remember those gifts, given so generously and lovingly, and to let go of all the rest.

More in the New Year but for now let me just say thank you to those of you who have stood by me even when I wouldn’t answer the door or the phone. Thank you to those who showed up for me when I said I was okay without you. Thank you to those who refused to let me go it alone and shadowed me from near and far. I am humbled by that kind of love, compassion and genuine friendship. And I promise to be better, do better and most of all, get better in 2015.

Tomorrow is a new day and it marks the beginning of a new year. And let me just say this – get out of the way. I intend to own 2015 and to make it my best year yet.

Much love,

M.

P.S. Most of you have seen these on FB but here are…

My 14 Life Lessons For 2014

1. In every experience there is something to be grateful for.
2. You can only be fearless if you have known fear. But living in fear is your choice. Choose not to.
3. Painkillers are highly overrated. Red wine is highly underrated.
4. There is a big difference between pity and compassion. No one needs pity but at some point we will all need compassion.
5. In the end, the only question that will matter is, “Did you love enough?”
6. Laughter and joy are as essential to life as food and water.
7. It’s way more fun to raise people up than to put them down.
8. Your only job is to be the very best version of yourself. Get to work.
9. When others try to humiliate, degrade, or diminish you, it says more about them than it does about you. The only person who can turn you into a victim is yourself.
10. Feelings are not fatal. Not feeling is.
11. Never say no to cake.
12. Taking leaps of faith, stepping into the unknown, letting go before you know what’s next, are the only ways to get to the really good stuff.
13. Let yourself be astounded and surrounded by the gifts of friendship, loyalty and unconditional love. Pass it on.
14. Even if something can’t be cured, it can be healed.