It’s a gloomy morning and the raindrops are still drying on the leaves outside. It’s been a long time since I wrote anything on this blog, but to leave it like this would be to leave everyone with the impression that the battle is done and the war is won and I’ve ridden off into the sunset of a new fairy tale.
A friend called me yesterday, who is in the middle of chemo, and told me she had been reading my blog all over again and that it was making her feel better because it was how she was feeling and she knew she was not alone, weak or crazy.
I write this blog in isolation, sitting at my desk and often looking out the window. And then I post it and I forget that it goes out into the world and while I know that some people read it, I don’t associate it with being something that could provide information, comfort or hope to others. I will freely admit that I selfishly write this for myself, to make sense of what I am feeling at different times. To have to organize it on paper and find the right words has been the way I was able to organize the time from diagnosis until treatment was over.
After a blog prompted by a questions someone asked me in London a year and a half ago, I hit writer’s block. I sat down many times to write more. I knew I needed to keep writing. I knew that talking about what happened after the treatment, surgery, doctors’ appointments, tests etc. faded into the background was probably the most important part of what needed to be talked about.
I could not write a sentence. I sat down in front of my computer and a few minutes later, fled. If I’m being totally honest, I fled because I believed that the things I needed to write would be construed as indulgent, selfish, pitying, disrespectful to those who died, and flat out unacceptable for people to hear. It would shock people. It would make them furious. It would diminish me in many people’s eyes.
So the last year and a half has been a journey of trying to figure this all out.
Honestly though, as I had before, I tried to run from it, pretend the feelings were not there, stuff them down deep inside and hope they would somehow dissolve on their own. And I believed that I was the only one doing that while at the same time feeling guilty that I was letting down anyone who had cancer and was reading this blog because it just ended with my treatments and left people dangling. For those with cancer and coming out of treatment, it left them feeling crazy, abnormal, weak because they were not jumping right back into life. Ending my blog there was like running only half a race and leaving everyone thinking you won it.
It feels dishonest and it feels disingenuous to anyone who looked to this blog so they would not feel alone, insane, crazy, the only one, etc. So I’m going to finish the race and be happy with my finish, whatever place I land in. Time for total honesty.
Last November, I lost it. my apartment was a disaster, I wouldn’t go out, I was living day to day, one day furious, the next inconsolable, and always wondering if I would be able to pay rent. I rarely picked up the phone or answered my doorbell. I wasn’t eating, my appetite had not come back after the last rounds of chemo, I moved from my bed to the couch and back again as if I was sleepwalking. In bed, I wrapped myself in my blankets, swaddling myself like a new born baby. I had constant dreams, always terrifying, rarely remembered. I couldn’t read my books, the place I most often found solace, and I ran out of TV shows to pass the time. I was weak and dizzy and had fallen a couple of times in my apartment, always bruised and once ending up with a black eye.
And then one day, I was on the floor, sobbing, shaking and scared and knew that it was time to accept that I couldn’t do this alone and more importantly that accepting that was not a defeat, not a sign of weakness, not me giving in. It was actually me deciding to step into the abyss and take on the second part of recovery, the part that didn’t have to do with hospitals, chemical treatments and the cutting of flesh.
In that undone state, I called Dr. L, an amazing doctor who has been my therapist, on and off through the various ups and downs, and who has deep experience in dealing with trauma. She heard my ragged sobs and sputter of words and said, “Marianne, will you be okay until tomorrow?” When I told her I would be, she gave me an appointment time for the next day and promised me we would figure it out. As I hung up the phone I think I exhaled for the first time in months.
So there I was the next day, sitting in her office again. I arrived in tears and am pretty sure that I said nothing succinct, wearing my distress like a big winter coat. She let me go for a while, and when I finally paused to catch my breath, she said, “Marianne, you have been through another enormous trauma. Multiple traumas. You are battling the PTSD at its strongest, and you’re still insisting that you can do it all on your own and that it wasn’t that big of a deal. That somehow not being able to handle it yourself is a failure.” I think we have already established that I am not good at asking for help or for anything that I need. In fact, I have a hard time articulating what I need or want.
I sat there feeling defeated and furious. I cannot tell you how much I hated the reality I was in. I didn’t want to do this again. I had done it too many times before only to have the rug pulled out from under me again. Deep inside I was clinging to the bottom of the pit, to the dark, dampness of it because I could tell myself it was the bottom and I felt if I stayed there, no matter how bad it was, nothing could make me fall further. Except that you can always fall further. That’s just how life works.
Dr. L., having learned long ago with me that she needed to get me back to a place where I could cope, told me that 3 things needed to happen; I needed to go to my GP and get on anti-depressants; we needed to find out a way that I had some financial security so I could stop being worried about paying my rent and buying groceries; and I needed to start coming to see her twice a week. As I opened my mouth to tell her I couldn’t afford that, she added that she was going to charge me a small portion of her normal rate. Well that did it, I burst back into tears again. That act of simple kindness and giving slayed me. Everything she was telling me to do, were things I did not want to do. I HATE anti-depressants. This is totally a ridiculous personal thing that I just need to get over. I didn’t want to have to deal with money and trying to figure that out. It has always been a charged issue for me. And, while I love Dr. L., I did not want to be back there twice a week, trying to staunch the bleeding of new wounds and picking the scabs of old ones.
But deep down, I knew Dr. L. was right. She always is. And there was a part of me that felt relieved. She was telling me what to do. She was taking control. That day, anyway.
And so I did what she told me to do.
It’s almost a year later. My apartment is still a mess, the outer reflection about how I am still feeling inside; I’m leaving the house more and socializing better; and I have a really great job that challenges me and pays me. Progress!
One of the biggest things that Dr. L. and I have figured out is that in 30 years, I’ve never planned for more that 6 months in advance. At 18, when you are thinking about your life and what lies ahead, you are thinking long term. You go back to school and commit for years, you start your own company and have a five year plan, you do lots of things and you do them knowing they are temporary, fodder for great stories you can tell your grandchildren. I’ve lived my life in 6 month, and often smaller, sometimes minutes or hours, increments. Ask me what I want and I seriously cannot answer the question. It’s one I never thought I had the luxury to consider. After 30 years, the irony is that I know how to fight; figuring out to live is a whole different story. My entire adult life has been lived either under the spectre of cancer or caught firmly in its grasp.
Tomorrow is October 17th. Tomorrow marks the 30th anniversary of my first cancer diagnosis. I have been a cancer patient for 30 years. I’ve never been told I was cancer free, and I have never gone more than a year without something pulling me back into the cancer world by suspicious symptoms that require invasive tests. As I’m told by Dr. L., cancer is imprinted on my genetic material, it’s etched on my cells, it’s carved into my brain. That is just reality. It’s not about erasing cancer from my life, which I spent a lot of years trying to do. It’s not about portraying myself as some kind of upbeat cancer superhero, which was just me lying to myself and trying to look after others, feeding off attention I wasn’t getting any other way.
It is about finding a way back to myself, about first moving myself on my todo list and then up it so that I recognize that I matter. It is about accepting that I lived, and about letting go of the guilt that I have felt for 30 years that for reasons I don’t understand, I survived when so many others did not. It is about recognizing and accepting that cancer will always be a part of my life but that I will figure out ways to recognize when a trigger gets tripped and be able stop the crazy uncontrollable downward spiral.
Thirty years. Thirty years in which so many of my adolescent and adult dreams have been lost. Thirty years in which the things most people take for granted, getting married, having children, making a home, have been suffocated and snuffed out. Thirty years in which the trauma of repeated diagnosis clouded out the sunlight and warmth and shackled me to the fundamental belief that this disease was always going to control my life.
Thirty freaking years! And I still wake up most mornings and for a few beautiful seconds, I feel like I am 18 and have my whole life ahead of me until reality comes speeding in and I realize that it’s 30 years later and the passing of those years is written on my body in scars.
Yeah, it’s thirty years. It’s thirty years longer than most people expected me to live. It’s also thirty years of friendships, laughter, adventures, love, soaring accomplishments and rewarding experiences. And none of those things have to do with cancer.
Thirty years of fighting, trusting my gut, not accepting that there was only one way, taking on doctors and winning, and thirty years of surviving what often felt un-survivable.
I’m alive. Those two words are nothing short of miraculous. I’m alive.
Now I’m working on the healing part. Healing my body, healing my head, healing my heart, healing my soul. And if thirty years has taught me anything, it’s that at some point we will all have to embark on this kind of healing journey for one reason or another. It’s that we are all usually working on some kind of healing. Thirty years later, as hard as it feels sometimes, I’m incredibly grateful to have reached this part of the process. I’m healing. And that is something to be celebrated. I’m healing.
Happy 30 years of surviving to me. I’m going to eat cake tomorrow. Chocolate. And when I blow out the candle my wish will be for the next year to be one filled with more heartfelt, brutally honest, and grace filled healing.
P.S. Just posted this and then realized, once again, that math is not my area of strength!! Tomorrow is 31 years since I was first diagnosed! Ooops! I missed the 30th and went right to the 31st. I’m still eating cake. Right after I do some basic math exercises…