From Your Perspective

Sometimes it feels like my letters are foreshadowing my own life. Just as I finish writing about how no one is promised tomorrow, my scan results come back and the news is less than good.  

I was so certain the results would be good again, I mean I feel great, so why wouldn’t the scans be good? Rach and I always tell ourselves that whatever it is, we’ll keep moving forward, and we do. As we made our way down to the hospital that morning, there was minimal anxiety about the results which was nice, in fact the whole last month has been almost completely devoid of anxiety because of the switch that flipped when I got the good news last time, and I really enjoyed that freedom from the anxiety. We went up and did the initial blood work and then went to the little waiting room where we would see the doctor. The minutes slipped by and as we waited, anxiety began to build, was it taking so long because something was wrong? A million thoughts sped through my head as we waited for the doctor to come in. When she finally did enter the room, the look on her face spoke volumes, she took a seat and looked at me and explained that the immunotherapy isn’t working anymore, the tumour has mutated into a form that resists the treatment and theres been new growth on the existing tumours. All of the significant reduction had been undone and then some, I was further than back to the start. The breath flew from my lungs, I couldn’t comprehend what she was telling me, it didn’t add up! I feel too good for it to be bad news! I felt the blood drain from my face, I couldn’t look over at Rach because I could hear her crying and I knew if I looked into her eyes at the moment, I wouldn’t be able to hold back my own tears either, so I took some deep breaths and tried to focus on what the doctor was saying. But it was all a blur, something about the types of chemo they want to try now and listing off all the horrible side effects I should expect. I had a million other thoughts running through my head though, was this it? Is this where it all goes downhill? How can I look at my daughters knowing that the final countdown has begun. The doctor left and we all sat there speechless, I laid back on the bed and stared up at the ceiling as my brain shifted from zero to a hundred a thousand times. A nurse came in a few minutes later to take some blood, she put her hand on my arm and squeezed gently as she said “I’m so sorry Lorne” and it was like that was worse than the actual news, her empathy pushed me over the edge and I couldn’t hold back my tears any more, I wept openly while she drew the blood she needed and left. It felt like it took an eternity to get home and I could hardly bring myself to go inside and look at Riley and Sadie. Rileys innocent questioning of why I’m crying and asking if I’m okay make it impossible for me to stop crying in that moment, so I don’t, instead I just ask her for a hug and squeeze her tight, probably tighter than I should have and tell her that I feel better now. She smiles and skips away, I sit on the step and wipe more tears from my eyes before going to do the same thing to Sadie. It was a hard night, I spent the last little while feeling so good, planning my summer and all the activities and adventures I wanted to have and then in the blink of an eye it gets torn away from me.  No one is promised tomorrow. 

 We’re on our way to Israel now and I might be a little depressed and sad and all I want to do is curl into a ball and cry  but like I said, whatever it is we’ll keep moving forward. We have no control over any of this but we can control how we react to it. I look at is as another day where I feel good, another day I get to spend with my girls, another day to say I love you. So as I digest this news and let the immunotherapy clear out of my system, I’ll enjoy the fact that I’m still feeling good. We’ll sit on the beach and laugh and play and I’ll consider whether or not I want to spend what could very well be my last summer on earth, in the throes of a chemo treatment that probably won’t extend my life in any meaningful way. The worst part is that the doctors have no idea if this will work or not, like I said before, they’re just going down a list of drugs and hoping something sticks. So I have to ask myself, am I ready to give up my quality of life for a “maybe”? Will I spend my summer in agony just so they can tell me it didn’t do anything? these are impossible questions that need answers soon, I was too shocked in the moment to ask the doctor those important questions that will help me determine how to move forward. Suddenly it’s all too real again and that switch in my mind has flipped back to constant fear and anxiety, every little thing triggers the most intense emotions, I cry listening to music that shouldn’t make me cry and I get angry at things that shouldn’t make me angry but I can’t help it. And now we’re here surrounded by a hundred people who only know about how good things are going and I don’t have the heart to tell them the truth when they ask me how I’m doing. I’m so sorry to the whole Israel crew for being misleading but your love and warmth was something I wasn’t ready to trade for sad, sympathetic eyes. Everybody is so happy to see me doing well and looking so good, I can’t bare to take that away from anyone and if I’m being honest, I know its wrong but it feels kind of nice to pretend if only for a moment that things are good even though I know they’re not, somehow going along with it makes me feel like it’s real and it feels nice. 

 I know I’m not the only one thinking about this. I know that whatever I’m feeling, Rach is feeling too, I always write from my perspective but hers is just as important, if not more. I can’t imagine what it must be like for her to have to witness all of this, knowing that she’s about to turn thirty and is going to lose the partner that she’s had for almost half her life. I see the look in her eyes when a stranger says what a beautiful family we have or how blessed we are, I see the pain on her face at those comments and I feel it too. More than those looks, I see the mental struggle she goes through every single day, she tries to hide it and gives me all the space and freedom I need while she looks after Riley and Sadie, weather its waking up with them in the morning so I can sleep or taking the lead when Riley or Sadie are being difficult because she sees how much anxiety it gives me. But she needs the space to cope and comprehend all of this just as much as I do, and I feel awful that I can’t give it to her. I know sometimes she feels like she doesn’t have a life anymore, its hard to find time to do the things she loves, the things that make her her and I know its only going to get harder. I try to remind her that she’s everything, that she’s doing everything, keeping our little humans alive and all on the bare minimum of sleep. She’s doing an amazing job at the hardest thing she’ll ever have to do and she inspires everyone who sees her to be better.

Our therapist told us not to grieve while I’m still here but that doesn’t mean there isn’t a great deal of sorrow that needs to be dealt with every single day. I try to take Riley or Sadie when I can and lately its been easier but when I got the news the other day, it was like my patience and stamina just dropped below zero and trying to deal with a three year olds tantrum or a fussy eight month old is much more difficult for me to bare now. It feels so selfish of me because I know it’s just as hard for Rach to handle but she does it! She takes care of the girls and me! I try every day to come up with ways to repay her but I don’t know if I’ll ever be able to. I know its just as hard for her, even though I’m the one physically going through it, whatever mental struggle I’m having, she’s having too and I’m so sorry for that, especially because for me it will end sooner than it will for her. She’ll be here long after I’m gone and will look into my eyes every time she looks at Riley or Sadie and that will either be the most beautiful thing or the hardest thing in the world. 

Every ones life is filled with its own drama and issues and I don’t mean to mitigate anyone else’s problems but it’s so hard not to see other people’s shit as insignificant. Before I’ve even finished writing about this tragic turn of events, I got a call from the doctor that monitors my brain and he dealt another devastating blow. So don’t complain to me that your soup was cold or that traffic was bad this morning. I sit by the pool watching Riley play with all her cousins and I’m having a panic attack because the doctor is telling me that they noticed a spot in the last scan that wasn’t there before. Don’t complain to me that your kids are being fussy or that your back hurts while I question whether or not I’ll see my daughters next birthday. My heart beats through my chest and I start sweating, I can hear Rileys voice calling me to come in the water but I can’t move. Is this the beginning of the end for me? I’m thirteen months into a twelve to fourteen month prognosis and it seems like everything that could go wrong, has just gone wrong. Treatment stopped working, new growth in my chest and brain. All of the sudden I’m tired, my head hurts and I feel nauseous and dizzy but I can’t tell if its from jet lag, a brain tumour, anxiety or just general panic but the compounding effects of all of that is taking a toll on me and I feel sick to my core. All I want to do is sleep but I can’t, I need to be here for Riley, Sadie and Rachie. I need to squeeze every waking second and get the absolute most out of it. They all need me as much as I need them and I’m trying so hard to enjoy every moment I have but it’s all so tainted now and feels so unfair. I look around at the families and they’re all celebrating thirty, forty and fiftieth anniversaries and rach and I haven’t even made it to our fifth. I feel a bout of dizziness and a week before I would have shrugged it off as nothing but I can’t do that now because now it comes with a side of panic. Suddenly everything is catapulted into top priority again, there is no back burner. I have to finish everything now, tie up all my loose ends, finish my will…finish my book, plan Rachels birthday, start my foundation…say my goodbyes?The list goes on and on. I’m thirty four years old and I’m going to die soon, I don’t know how to explain it but I just feel it. It was a miracle that I got this one in eight million diagnosis and I’ll need a miracle to keep me alive. The power behind the words of a doctor cannot be underestimated and I don’t know if its just me being hyper analytic of everything I’m feeling or if it’s actually real and should be concerning but it certainly feels real enough to me and it doesn’t feel good. 

The last couple nights, Riley has been sleeping in our bed and Sadie has been right next to us in her crib and I couldn’t be happier. I love being able hear the little noises they both make in the night, I love being able to open my eyes and see Rileys sleeping face next to mine, it’s the most beautiful thing I could ask for right now because I know that soon I won’t have that any more, I’ll be stuck in a hospital bed by myself with nothing but pictures and my own foggy memory to get me through the nights. We’re trying to get more doctors to look at my case and I’m still hopeful but I can’t deny what my body is feeling, is it depression and anxiety or is it shutting down? I hope I get to look back on this post and laugh about it. I’m acutely aware of how well my fingers are working and constantly making sure both sides of my face are moving but I feel like those aren’t the symptoms I need to be worried about. I feel like it would be easy to say that everyone else is so lucky to not have to be in my position, I look around me at all the young families who get to grow and watch their kids grow.  They all talk so effortlessly about the time they have to fix problems or make changes and I cry on the inside because I don’t have that. The truth is, were all lucky to have had the time we have, I may not get to grow and watch my kids grow but I’m lucky to have watched them this much, I’m lucky to have been surrounded by love so I can share that with my girls. I’m lucky to have found a love that people write about in story books. I’m lucky for a million more reasons than I am unlucky. Most of us are, but most people find it easier to focus on the unlucky parts. Someone said to me recently that life is either all miracles or no miracles at all and that really resonated with me because I think a miracle is all about perspective. Waking up each day is mundane to most people but every day that I get to wake up is a miracle for me. Every day that I get to share with my girls, all the good and bad parts are all miracles for me. While others curse their situations, they’re kids or families, I’m just grateful to be here to experience them for another day. 

4 thoughts on “From Your Perspective

  1. Doris and Richard says:

    Dear Lorne, Rachel, Riley and Sadie – once again, Lorne you have shared your inner sole and self to those who love and know you. You are truly a hero. We do not know any other person who has the strength and ability to share their innermost sole and experience with others. We pray that you will survive this next period of trial and error and the sun will continue to shine on you and your precious beautiful family. One day at a time. With love and admiration, Doris and Richard


  2. Sheila. Engel Cohen says:

    It is small consolation but you have lived more in thoughts and feelings and emotions than most people experience who are much older than you. You have a lifetime of memories of wonderful travels and a beautiful family to enjoy now. Whatever the future brings you have made a profound impact in this world. Your courage at every stage of this terrifying journey is inspiring.


  3. Annette Shaffer says:

    Lorne, may any and all negativity within you in case in its own light, and further in case was in a triple capsule of the Christ white light, the green healing light and the Violet flame of transmutation, to be cleared cleansed and qualified and restored to its natural state of purity and perfection. May the blessings be.


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