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.