Silence and Stillness

I’ve been largely silent during these past few weeks as I’ve recovered from HIPEC surgery, not just on this blog but also in my everyday life. That silence has been a break, a vacation if you will, from a life that has been so shaped by cancer during the past nine months (and especially so during the last four months), one that I desperately needed; I hadn’t realized how much I needed it until this past week.

I’ve compared life with cancer to a roller coaster ride, and it definitely has been a hell of a ride, especially since the beginning of this year. This year began with the simultaneous sense of achievement and anxiety that marked the last round of my initial cycle of chemo (which we all had hoped naively would be my last, at least for a while) accompanied by my wonderful and crazy surprise in Times Square, the elation and relief of having clean scans in late January, the romance and wonder of Josh and my vacation to Paris in early February, the devastation in discovering a rising tumor marker while off chemo in mid February, the reluctant hopefulness in learning that HIPEC was an option in late February, the stress in making the decision as to whether and when to do HIPEC in early March, the fear of impending surgery, the joy and relief in the discovery of minimal disease during surgery and complete cytoreduction (i.e., tumor removal) in mid-March, the physical and emotional pain of recovery that have defined the last five weeks and finally the anxiety of what lies ahead as I start a new chemo regimen. And yet oddly, in this tail-end period of my post-surgical recovery, I have found a quiet and unexpected respite from that roller coaster ride. My coaster has stopped at the top of a decline, the steepness of which is indeterminable at this time, and so I have stopped too, and have found myself rejoicing in the silence and stillness of my body and mind.  I am not accustomed to silence and stillness and so it has taken me these many weeks in recovery to find that joy.

Unable to go to the gym and just generally weak for so long, I’d take Mia and Belle to school a couple times a week, go to my weekly therapy sessions and see maybe one or two friends at most per week; otherwise, I didn’t really meet up with friends for lunch or coffee. I didn’t respond to emails, texts or phone calls; or if I did, my responses were brief. I was slow in doing what I call the administrative stuff of life (things that are entirely my responsibility in my household) – submitting insurance claims, coordinating with our accountant about our income tax returns, paying bills – pushing everything to the last minute. In short, I have refrained from engaging with the world, retreating into myself and the little nucleus of my family. I’ve spent many hours at home, at first wallowing in the isolation of the physical pain and mental anguish of recovering from major surgery; and then as the pain began to subside to a dull annoying but tolerable ache, I watched TV with my children (their shows of course) and slowly began to take on the menial tasks of caring for them again (e.g., dressing them, getting their breakfast, taking Belle to the potty). My parents were virtually my constant companions during the day. My mother always made her clear-broth soups packed with vegetables and minimal amounts of pork, variations of soups that I grew up eating that brought me great comfort and was pretty much the only thing I could tolerate in the days immediately after my return from the hospital. My father always went to Chinatown to pick up Portuguese egg tarts, a delectable custard surrounded by a flaky pastry shell, set under the broiler for seconds to give it a little brown color; it is one of my favorite (unhealthy) desserts in the whole world and my one constant indulgence while my parents were in town. When I was strong enough and I (and Josh) had grown sick of Chinese food, I cooked things like chicken enchiladas with tomatillo salsa and chicken pot pie, demanding that my parents serve as sous chefs and cleanup crew as I supervised.

My retreat from the world was not something I necessarily wanted, certainly not in the beginning. Rather, it was forced upon me. Recuperation was boring. Being holed up all day, deprived of my usual hustle and bustle, was depressing. And while I love my children and my parents dearly, being around them all the time soon drove me crazy. Belle in particular is going through a super-whiney and demanding phase where she constantly insists that I play princess with her and otherwise do as she commands or else face the wrath embodied in her fierce temper tantrums. My mother’s endless nagging about taking some mysterious Chinese herb that would cure me of cancer made me batty – never mind my arguments that if indeed said herb could cure cancer, wouldn’t everyone be taking it. Between withstanding my mother and Belle – I swear they have the same stubborn streak – I was mentally exhausted and craving escape.

But when I went out for a long walk or whatever, I found myself throwing up on subway platforms (as I alluded to during my previous post), in pain and tired, so tired that I was crying on the train one day and then uncharacteristically weepy again during a therapy session two weeks ago. Despite the success of my surgery, I felt down, convinced that I would die in the not-so-distant future from my cancer. My therapist told me then and there that, knowing me as well as she did over the last 15 years, she thought I was overdoing it, walking too much, cooking too much, thinking too much, feeling too much, doing too much. I told her that as someone who has embraced intense exercise my entire adult life, I don’t believe that one can become stronger unless one pushes one’s body to the point of fatigue; consider how, I told her, I had worked out throughout my first cycle of chemo and I found that doing so very effectively combatted all the side effects. She said that that rule didn’t apply at a time when a body is recovering from surgery, that giving my body some rest, giving myself permission to sit and lie around and do nothing, was the best thing I could do for my body and my mind, that a body in a state of rest would heal much more quickly. Her words did have a certain logic that I couldn’t deny – think of the athlete who returns to his sport before his injury has fully recovered only to be reinjured. As I pondered my therapist’s words, I realized that indeed, my beliefs about physical strength requiring a constant pushing are paralleled in the mental and emotional contexts too. I believe in working through mental and emotional pain. I believe in extrapolating profound and valuable lessons about friendship, family, love, life and death from every experience. I embrace self-awareness and seek perpetually to be thoughtful and analytical. The consequence is a mind, in addition to a body, that is never at rest, never.

And so I went home and rededicated myself to resting physically, mentally and emotionally. Cousin N (who because she’s in advertising knows what the hottest shows on TV are) suggested that I watch Scandal, that it was the show that people talked about the next day around the water cooler. Josh and I have our shows that we watch together weekly – Game of Thrones, Mad Men, etc. – but we and certainly I have never just sat and watched and watched anything during the day, at least not as an adult. That always struck me as lazy and unproductive. But that’s exactly what I did with Scandal. I binged on the show day and night like it was an addictive drug, watching episode after episode, getting lost in the world of Olivia Pope & Associates and forgetting for as long as I watched about cancer. I swooned every time I saw Jake Ballard (played by Scott Foley) on screen; I could look at him all day long. I told Josh, “I’m sorry honey but he’s more handsome than you.” And then I asked if he could go get plastic surgery to look more like hotty Jake. Don’t worry – Josh isn’t at all jealous. While I daydreamed about Jake and pulled for him and Olivia to end up together, I didn’t think about the meaning of life or the point of my suffering. I didn’t think about my future or absence of a future. I didn’t think, period. I’m not one to drink or do recreational drugs, and honestly, I’ve always thought of people who overindulged in artificial means of escape and coping with their problems as somewhat cowardly, weak. But after watching all three Scandal seasons within one week, I see that there is value to me in this type of escape, that this type of indulgence (not overindulgence) is not cowardice but is instead rest and can be a reminder of normal life, something that’s been lost to me for the last nine months.

Normal people watch Scandal. Normal people make home-cooked meals. Normal people go shopping for clothes with their husbands. Normal people play with (and yell at) their children without thinking about cancer. Normal people search for a new couch to buy to replace the stained and crumpled one the kids have destroyed. Scandal helped me rediscover that normalcy and the rediscovery of that normalcy is the reason I’ve been so silent.

But the silence and stillness are coming to an end. In a few hours, I will be going into the NYU Cancer Center to start a new chemo regimen. Six more months of fighting. Six more months of going in for biweekly treatments. Six more months of struggling to find a new normal that seems to be constantly shifting under my feet so I’m forever being thrown off-balance. I am sad that my period of rest is over. I wish I could tell you that I am approaching this new cycle of treatment with the same fire and determination with which I approached my first cycle. But I can’t. The truth is that I’m weary. I wish I could sit at home and watch more episodes of Scandal. I’m not ready for the roller coaster to restart. I’m afraid of the steepness of the next decline, of how this new treatment will affect me. For awhile, burying myself in activities that are so normal allowed me to forget about impending chemo, but in the hours before it’s about to start, I can’t hide and escape anymore. It’s time to gear up for the next battle and put the armor on. It’s time to engage once again in the world and my war, to be the fighter that I am.


8 Comments (+add yours?)

  1. April Carty
    Apr 21, 2014 @ 11:48:46

    You can do this. If/when you need some additional “escape” time, I suggest Friday Night Lights, Parenthood, and The West Wing.


  2. mthurston
    Apr 21, 2014 @ 13:24:18

    Or as Olivia Pope and company say, gladiator. You sound like a gladiator to me. Fight on.


  3. Dana
    Apr 21, 2014 @ 16:39:26

    As the world shifts and moves under you. I think of my grandfather who was a submariner, you’ll get your sea legs. I’m so happy that you found some stillness and, hopefully, peace, in doing nothing.


  4. May Steinhardt
    Apr 21, 2014 @ 19:15:54

    Julie – keeping you close in my thoughts and prayers. There are no words so I am sending a {{{VIRTUAL HUG}}} with heartfelt arms wrapped around you. Try keeping your chin up my friend.


  5. baint1
    Apr 21, 2014 @ 23:38:50

    Julie I love reading your blog. I’m glad you found and embraced your escape from the reality of cancer treatment. My college son has set up Netflix on our new tv and is determined I catch up on Scandal and several other shows he has enjoyed. I will be praying for you as you begin this round of chemo. I hope that your energy returns and you can exercise, eat healthy and battle those side effects which are so prevalent with chemo. Sending big cyber hugs! Judy

    Sent from my iPad


  6. Bill Ide
    Apr 22, 2014 @ 10:51:32

    You pack more into a day of life than many do in a lifetime! Look back at the long and powerful wake you have already left touching and inspiring so many. May that great momentum keep the ship moving through the future waves with great force and success. Bill


  7. Kim
    Apr 23, 2014 @ 16:49:12

    Julie–You are my first time actually ever replying to a blog post but I was searching for something on my husbands current symptoms and came across your site. He has IV Colon cancer he has been battling for 3.5 years now. He to got the HIPEC surgery in Jan 2013. Hard to believe sometimes it is over a year ago for us already. Keep fighting and thinking positive and hope you feel the power of God at your side as many are never even eligible to get this surgery and hope you know how much blessing it is that you were able to receive it and are doing well from what it sounds. Overall Dan’s HIPEC went well but we had some complications that delayed his recovery but have absolutely no regrets about the surgery. I promise you will make it thru this and be back driving a car again and going to work etc. Just keep thinking postitive thoughts and know God is at your side and turn all your worries and fears over to him and you just concentrate on getting well again.


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