Hold Me Closer, Stupid Cancer
April 6th, 2012
This past weekend, I met Scott Slater at the OMG! Summit. I asked him to write a reflection of his experience there, as we are at different places in this whole cancer survivor gig.
Scott is a musician/producer living in Brooklyn, NY. He was putting the finishing touches on his first CD, Chained by Dreams, with singer/songwriter Michelle Hotaling when he was diagnosed with testicular cancer in 2006. After surgery, five and a half weeks of radiation and an all-clear prognosis, Scott continued his work with music. In 2009 Scott and Michelle released a 2nd CD called Sweet Clarity, and followed it up this year with a free, download-only Fleetwood Mac/Stevie Nicks tribute album called Crystal Revisions. Scott is also a mobile app developer for Time Inc. and runs a part-time energy business in which he helps people get free electricity and natural gas in their homes and small businesses.
In his keynote address, Matthew Zachary, the group’s founder and CEO, asked if there were any people present who had attended the first summit back in 2008. There was one lonely “woohoo” from the audience. (That’s right, THIS guy.) This was my fifth OMG conference. Five out of five.
(Ed. note: Scott’s the guy on the right.)
And yet, I was completely unprepared for how profoundly this year’s summit would impact me.
I’m still trying to sort that out, but I’m going to give you my best attempt.
I was so looking forward to the event. I’ve met some wonderful people at all of the many Stupid Cancer events over the years. But the people I met at last year’s summit are people who are going to with me for life, so I was certainly looking forward to seeing them again. I was also eager to get out of New York City for an extended weekend. Vegas is not my favorite place in the world, but that said I was excited for the insanity, the forced opulence and the over-the-top-ness of it all.
Friday night was a kickoff event at Moon, a rooftop club at the Palms Hotel and Casino. It was a chance to re-connect with some old friends and meet some new ones.
It was also a chance to get Jesse “Urbalist” Hershkowitz’s song “Stupid Cancer” stuck in my head
and NEVER GET IT OUT. Seriously, his brand of life-affirming, positive hip-hop is something you need to check out.
(And getting a shout-out by name in one of the verses of that song has NOTHING to do with me liking it so much. I swear.)
But even then, the weekend felt… emotional.
I had a thought that Matt ended up echoing in the keynote:
“It’s great to see so many people here … but it also SUCKS to see so many people here.”
This thought continued at breakfast the next morning. As I sat in the big banquet hall, I looked around the room at the smiling faces, old timers like me and the newcomers realizing they were in a room full of people who GET it.
But through it all, an unexpected wave of anger come over me. What kind of world, what kind of universe, derails the lives of so many beautiful, beautiful people? How many people in this room had dreams they’ll never get to realize? Medical debts they’ll never overcome? How many people in this room are going to die soon due to cancer? How many people in this room are going to die soon and they ALREADY KNOW IT?
The rest of the day brought many similar profound, heartbreaking, infuriating moments.
The young woman in the audience at the Self-Image Workshop with Stage 4 metastatic breast cancer who felt crushing guilt for the selflessness of her caretaker husband. The young man who, due to his fight with cancer, was now bald, overweight, physically compromised, in debt, and living with his parents. (“Dating is going to be fantastic — I’m a real catch,” he joked.) The woman whose significant other had just left her two months prior because of her fight with cancer — all of this as if fighting cancer itself wasn’t difficult enough. Cancer at any age is devastating, but I think these stories exemplify the unique struggle that befalls the adolescent or young adult cancer survivor.
Also on Saturday was a panel on Spirituality. I thought the panelists did a fine job of expressing spirituality in a non-denominational way but I became very interested when they decided, with 15 minutes left in the session, to open up the floor to questions or comments. The first few people who lined up to speak offered the kind of thoughts I would expect: How God has a Plan for them, how the cancer experience has all been part of a journey, how God never gives us more than we can handle, and so on. One mother came up to talk about how her son had lost his 13-year battle with cancer at a young age, and how he was at peace and with God now. I certainly don’t want to disparage anyone their beliefs — I think that when you hold a firm-rooted belief if your life, that for all intents and purposes, it exists as truth in your life.
I also knew that the sentiments I was hearing weren’t my truths.
But then a young woman whom we’ll call Chemobabe stepped up to the mic. She recounted the story of losing her brother to cancer years ago, receiving her own diagnosis shortly thereafter, and the ensuing struggles with which readers of this blog are no doubt familiar. And she was angry about it. And I could feel it in myself as well as see it in the nods of agreement around me:
Anger was the elephant in the room.
Here we all were at a panel on spirituality, in one way or another maybe hoping to leave somehow enlightened, whether it was by being reminded of a loving God, or the power of serenity, or the concept of surrender.
Well, I felt enlightened: I was angry.
I knew the panel was running out of time, but I felt the need to go up myself.
“What are you going to say?” asked my friend Alexandrea.
“I have no idea,” I replied.
I do remember it pretty well though. I stated that I am not a religious person at all but that I consider myself very spiritual. I can confidently say that I believe in God, but it’s not like any God I ever met in any church or synagogue.
And I came up with something that feels like truth to me: I’m not here to discover God’s plan for me; I’m here to tell God what my plan is. (Because if there IS a God, THAT is his plan for me.) My cancer wasn’t some sort of gift. It wasn’t given to me so I could learn some sort of lesson, it’s not some sort of journey I’m supposed to take, it wasn’t given to me as some sort of growth experience. It was something that happened to me. That’s all it was. But through it I have received many gifts, I have learned many lessons, I have journeyed far, and I have grown. All I know is right now, I’m alive. And while I’m alive I want to live with as much fucking color and as much vibrancy as I can muster.
There’s an old episode of “3rd Rock From the Sun” in which Wayne Knight’s character is bragging about being a cop and says, “In my line of work, it’s a good day if you come home alive.”
To which Joseph Gordon-Levitt’s character responds, “Isn’t that pretty much a good day no matter what your profession?”
Speaking of Joseph Gordon-Levitt, Saturday ended with a midnight screening of 50/50, the fantastic cancer dramedy by Will Reiser and Seth Rogen, starring Mr. Gordon-Levitt.
I had never seen it. I always wanted to, but it was one of those movies that came and went before I could get my act together. I sure as hell didn’t want to Netflix it and watch it alone on my laptop, so I was thrilled that I’d have the opportunity at OMG. The screening was in the Pearl Theater at the Palms. A group of five of us, Chemobabe included, commandeered a table and prepared to watch. Three of our group had seen it before.
Right from the get-go I realized I could not stop shaking. It was cold in the room but that had nothing to do with it.
And not too long after that, I realized I couldn’t stop crying.
Looking around the table I realized I was in good company. The pile of tissues at our table continued to grow until it became what one in our group referred to as Mount Tissue-monjaro.
There were so many scenes that hit so close to home (the detached and impersonal doctor, the abandoning significant other, the coldness of the hospital rooms and equipment, the sickness due to treatment, the sudden disappearance and loss of hospital compatriots), but there was one scene in particular in which Gordon-Levitt’s character, after an eternity of seemingly taking things in stride, has a complete meltdown in his friend’s car in a well-acted scene that I literally almost couldn’t bear to watch.
Thank goodness for bars in Vegas being open 24/7, and thank goodness for tequila. (And thank goodness for amazing people to share said tequila with.)
The day after Mt. Tissue-monjaro. We cleaned up alright.
And so it was that the weekend triggered, in a sense, the humble beginnings of my own Car Meltdown moment. I’ve taken lots of things in stride. I’ve experienced the hospitals, the loss, the abandonment, the aloof doctors. But I never really experienced the meltdown. After this weekend, I can feel it coming — maybe not to the extent of the scene in the movie, but I can tell that, even more than five years out from the end of my treatment, I have a lot of issues that I have yet to deal with despite feeling that I was “done” and that I had begun to move on.
My birthday was Monday, the day after the conference. I was talking to my best friend from high school. He was on the 89th floor of the World Trade Center on 9/11. Obviously, he survived though he can now recall probably a dozen separate instances in which he very nearly died. He has seen, heard, and experienced some truly terrible things. He finally went into therapy a couple of years ago and had this to share from his therapist:
When someone goes through a traumatic experience, the mind essentially separates the memories of what happened from the reality that it was YOU that was having the experience. It’s a survival mechanism: When you look back you tend to see it almost as if it happened to someone else. However, by the same token, mental health is restored, hopefully, when those links begin to reconnect. This begins to happen in most people between 5 and 10 years afterwards. I’m now five and a half years out — I am pretty sure this is the process that was sparked by OMG 2012.
I’m not relating all of this to scare anyone going through, or recently out of treatment. I think you already get the sense that this is a long, long process.
I’m relating all of this so that you remember to always be open to the process and to surrender to it while always keeping your mind open and accepting the well-intentioned care of your loved ones.
If you feel anger, feel it.
If you feel aloof, be it.
If you feel like crying, do it.
And if you start to feel those scarred strands of memories reconnecting somewhere down the line, let them.
No one gave you this experience so you could learn and grow. But don’t be afraid to learn and grow from it anyway.
This entry was posted on Friday, April 6th, 2012 at 7:00 am and is filed under Survivorship. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
Scott,
Thank you so, so much for this blog post. This particular paragraph struck me:
I’ve been trying to find that “truth” for seven years and you just nailed it in a simple paragraph.
Thank you for sharing your inspiring story.
Amanda,
Thank you so much for your comments. The fact that I’ve helped someone express their “truth” after seven years means more to me that I can tell you. If nothing else, that’s why we share. No one should feel like they’re going through cancer alone, and no one should feel like they’re surviving alone. This is a very long process. Maybe lifelong.
Thank you, Scott, for writing this. So many things spoke to me, but I really resonated with your points about anger. Anger is indeed the elephant in the room, on the sidewalk, at the fundraiser, in the chicken soup version of life with cancer. Why is it so difficult for this culture to acknowledge anger as a valid human emotion? It’s as though there is fear that anger, if acknowledged, will somehow crowd out hope, as if they are somehow mutually exclusive. It’s crazy if you ask me. Live the rainbow of emotion, I say. Anger is RED!
All the best to you,
Gayle Sulik
Powerful, powerful. This is an amazing post. Thank you so much.
Scott,
This is such an important and truthful post. I completely agree with you on so many things, especially the cancer/gift thing. It’s so not a gift. And the anger, well that’s another pet peeve of mine…it seems I have so many.
Each of us has the right to speak our own truth about our own cancer experience. Keep speaking yours. Thanks for this post.
Beautifully written, Scott. You capture so many of the powerful and painful experiences cancer dishes out. I too have felt angry, I too have a burning desire to live life more vividly, and I too have had cancer fallout come in waves over time. And I completely agree with the wisdom you share toward the end: we have to make room in our lives for these crappy cancer feelings. Down with the tyranny of the positive attitude! I hope we will be reading more from you in the future! Oh, and happy belated birthday.
Thanks for all the lovely words. This is such a great community. Oh and I forgot to mention, if anyone is on Twitter you can find me at @slaterama. Although it’s mostly nonsensical ramblings. You’ve been forewarned.
Thank you so much for this post Scott. I’m 1 year out and I’m barely getting into the emotional side of this whole cancer experience. I, too, was really impacted by those same exact sessions…especially the self image one. I’m just, now, having to deal with the abandonment thing, but it gave me strength and hope that things will work out. I couldn’t deal with things at all before OMG. I’m so glad I went
and I’m looking forward to next year when I’m a little emotionally stronger.
Scott – I love this post, particularly the last line…perfect!!
I am intrigued by the idea that it may take years for the psychological ‘reconnections’ to be made that allow full expression of grieving. I am just through 8 months of active treatment and wondered during that period why I found it so hard to cry – occasionally I’d have a little weep, giving myself permission to let loose (or so I thought), but I’d just kind of dry up almost immediately. I think that I was subconsciously protecting myself from ‘going under’ during that time when I had so much to deal with. I will prepared for my own tissue mountain whenever it comes (I’ll dub it Mt Kleenex-iuszko in honour of Australia’s highest peak!), knowing now not to be surprised if this is some years down the track.
Hi Liz! The grieving will come when you’re ready and if you’re open. I think what’s important now is to ALLOW it to be hard to cry right now — you just might not be there right now and that’s fine. When I first finished treatment I refused to use the term “cancer survivor” because I didn’t want to define myself by something that was such an awful experience. Of course, it’s the word “survivor” that’s the important one and not the “cancer.” I also dealt with a pretty fair amount of survivor’s guilt during that time — and still do. It will all come with time. Connecting with fellow survivors is one way to help when you’re ready.
Thanks for the post, I’m 1 year post treatment and still having meltdowns. I’m the all time queen of meltdowns ! During treatment they happened weekly….
if not more. I had a very hard time with everything ! Chemo. sucked as did radiation ! Now I have a daily reminders because chemo. and radiation left me with side effects.
I always thought melt downs were normal ? Will things ever get back to normal?
And yes, I glad to be alive, but its been a hard road !
Hi Ann!
There’s nothing that can be said that can make what you’re going through better. The best I can suggest is, when it comes to meltdowns, or how you feel post-treatment, try to surrender into what IS. That is, don’t resist the meltdowns, let them happen. Go into them to get through to the other side. The same is true with your side effects (both physical as well as emotional). Things might never get back to “normal”, or maybe they will. Until that happens, though, you will have a “new normal” and you can fight it or accept it. (“Accepting” it doesn’t mean liking it, mind you. It just means that what is, is — and whatever you do to live your life from this day forward can be done with greater resolve if you accept that things are the way they are right at this moment. (Does that make ANY sense?)
I’m not saying that I don’t have those “why me?” moments and I don’t get very angry and/or sad from time to time. But even when those moments come, I accept THEM. Acceptance is a very difficult concept for cancer survivors. It doesn’t mean you can’t take actions to change things — but your actions become diluted if you also spend a lot of your energy fighting what has ALREADY happened.
Life is a totality of joy, sorrow, pain, love, despair — in other words, it’s a big mess. When I was at college there was a section of campus that would turn into a huge mud pit every time it rained and one of the things we used to do to let off steam was slide headfirst into the mud. I didn’t want to at first because I didn’t want to get dirty — but the exhilaration I felt when I dove in was incredible.
Life is that mud pit. Messy. Fun. More exhilarating if you dive in headfirst. Things might get back to “normal”, they might not. Worrying about whether it will or not takes away from NOW — and now is all we ever have.
Thanks Scott,
Yes, it makes a lot of sense. Live for today and don’t spend energy looking back.
Enjoy life now !
I will print you reply, need to read it daily. Thanks for your time and kind words.
You have been very helpful. Thanks.
Going to share what I just read, it has given my comfort: My friend, It Was Never About People, But Always About the Lord! All that you have endured in your life, has never been about people’s love for you, acceptance of you or belief in you. All that you have endured has always been about the Lord. God has been trying to get you to see Him in everything. The Bible declares in Psalm 46:1 – God is our refuge and strength, a very present help in trouble. No matter who has walked out on you. No matter who has laughed you to scorn. No matter who has lied on you or attempted to assassinate your character. Beloved, It Was Never About People, But Always About the Lord! Pastor Darrick Mcghee April 5 2012
Daily devotional
The title is so clever. I think I’ll put on my high-heeled sneakers –and a wiglet on my head. The wiglet will cover my thinning hair, and the sneakers? Well, they might pinch my neuropathic toes. xx
Thank you for writing this. It is so freaking eloquent. Powerful and inspiring. <3
Terrific post. Been there (although I sure hope to get to 5-10 years!). CancerDancer is always looking for guest bloggers. If you would be interested, please let us know.
http://www.cancer-dancer.org
http://www.facebook.com/ocancerdancer
and on twitter @ocancerdancer
Thanks!
Esther
Although I’m one of the unlucky ones with metastatic disease, who will never have time to look on cancer as a “gift” (what kind of gift kills your child’s mother in front of him?) I so wish those of you who have entered the Survival Zone do learn to put this behind you.
I think, like in war, there should be PTSD counseling for survivors, and discussion of how to restart your lives in healthy ways. Why does the medical community ignore this, when post-cancer trauma is everywhere? I see far too many people years out from a diagnosis who will probably never see cancer again in their lives, still angry, still living the experience, still traumatized. Yes, the fear of it coming back is always going to be there but moving beyond that fear must begin at some point. A plan must be made not to “live” cancer anymore.
I wish that for all of you who will live out your normal lifespan, who will watch your kids grow up. May cancer just become a distant memory. Something that happened to you once, but never again.
A stage 3 survivor, with treatment and reconstructive issues lasting from 2009-2012, I am living proof of Survivor PTSD!!! I write from a Joywarrior perspective, but live with the knowledge that stage 3 is pretty predicative of the fact that it will one day reoccur.. I will die of breast cancer, for sure.
I live each day with renewed optimism,but not far from that outward joywarrior is the scared woman, fearing the recurrence; wishing it wasn’t true. We have to LIVE ON, With or Without cancer; damn it can be brutal to keep on keepin on in the cancer track of life.
Oh, yeah. Nodding head, complete agreement, have said the same things, always good to share some more validation. ‘Nuff said.
Thanks, Scott. CB is one of my best cyberpeeps. Glad she shared you with us.
Kathi
Good for you! I also don’t believe cancer is a gift; we all have our own truths, and perhaps this whole cancer-as-a-gift thing is a defense mechanism.
My view of God is a lot like your. I have belief and spirituality, but not one within the doors of organized religion.
Scott and CB, what a refreshing piece to read. I am a little over a year out from the end of my chemo, after being diagnosed at age 40 with stage 1 breast cancer and going with the bilateral mastectomy. I, too, have gone through this entire experience (so far) with very little emotion. I cried when I got the phone call after the biopsy but, my thoughts at that moment were really for my son, who was 4 at the time and I had divorced his dad just months previous to my diagnosis. At the start of all of this, I was all fired up about blogging my experience as a means of offering information to others, information that I did not get myself when it would have been useful. I started the page with one post and that was it. I think anger breeds activism and deep down, I want to be an advocate for others who are going through this, but I have a hard enough time with work-life balance without cancer in the picture. I was talking recently with a friend with whom I communicate only sporadically and he asked how I was doing. What I came up with was that I prefer to not think about it. Not so much because I’m frightened by it, or because I’m in denial, but because there is so little I can do about it. I can make healthy choices for myself and for my son and go see my doctors when I am supposed to and do what they tell me to do and that is all I can do. In the first few weeks after my diagnosis, I expended a LOT of mental energy examining my entire life, trying to figure out why this happened to me, and in the three weeks I had to wait for my surgery I had trouble focusing at work and experienced a lot of anxiety. Once the surgery was over, though, the anxiety was gone. I resigned myself to the knowledge that there is no one thing that led to this…not the weekly TV dinners of my childhood or the worn out teflon pans or the BPA or the McDonalds or the whatthefuckever. It just is. And I’ve moved on. At least I think I have.
I never had the meltdown.
I’ve not seen the film 50/50 and I don’t think I want to watch it at home, alone, the way I watch every other movie. Or maybe I do? When I was going through chemo, someone suggested a support group. I had no desire to spend time with a group of people who were in various stages of recovery or, even worse, various stages of non-recovery. When I got my diagnosis, I did not spend hours with Dr Google, a term I picked up from my oncologist. I wanted to hear only the Super Survivor stories. The women who had a mastectomy in the 70s who I’ve known for years and about whom I had no clue they’d ever been through a cancer diagnosis. People came out of the woodwork…co-worker’s moms, ex-sister-in-law’s aunts, colleagues of my mother…all with different perspectives on the experience. I focused only on the fact that they had been diagnosed 10, 20, 30 plus years ago and they are here now and healthy.
I don’t recall how I stumbled upon Chemobabe’s blog, but I’ve watched these posts for about a year now, I think. I like her style and her sense of life but I do not truly read most of them because, well, because I choose to not think about cancer. But after reading about this conference, I find myself wanting to join in. I guess I’m not really part of the ‘young adult’ group, having been diagnosed at age 40, but I’m sure as hell not a senior and am far younger than the average breast cancer patient. Of the women who I talked to immediately after my diagnosis, the person whose outlook resonated with me the most was a young woman who was diagnosed at 25 with lymphoma. She told me about delaying her chemo to allow for time to freeze her eggs and of the rooftop party, overlooking the San Francisco bay, with her girlfriends each taking turns with the scissors, cutting her hair shorter and shorter to see how it would look as it grew back in, ending the process with the clippers to shave it down to the scalp and then going bowling. Her advice to me was to just keep doing what you do. Go to your doctor appointments and sit through your chemo and take the drugs they give you and then go back to whatever it is that you do. I had my own party at home after my first round of chemo, providing my friends with wine and scissors and I donated my hair (we had to break out the meat cutting scissors to get through the ponytail of long thick hair…sigh). The chemo for me wasn’t awful. I missed very little work and had an excuse to not participate in the stress of the holidays that year. Although it turned out to be one of the snowiest winters in Minneapolis on record and, being a single mom, that winter was a challenge of immeasurable magnitude, complete with ice dams leaking into my kitchen on Christmas Eve morning and having to walk several blocks with my son to catch a cab to the hospital for my white cell booster because my car could not get through the snow and the cab could not get to my house. I credit my sisu (I am Finnish…my friends call me a Vulcan) for getting me through the winter without having an emotional breakdown of any sort.
I guess that meltdown may be still to come.
I started writing this a few weeks ago and am just coming back to it now. Today Adam Yauch died and when I read that headline I felt like I had been punched in the stomach. It literally took the breath out of me. Then I got very hot and very mad. Likely a random hot flash is partially to blame but the news had a heavy effect on me. I think this is another reason why I have not sought out any survivorship program. I have never unexpectedly lost anyone close to me. I don’t want to bring that sadness upon myself by opening myself up to relationships with others going through illness, and I don’t want to be reminded that people die from this. But I find myself wishing I knew people my age who get it. For those times when I do feel like talking about it.
To top it all off, I’m a dyed in the wool Introvert (yes…with a capital ‘I’), making it even less appealing to me to join any group of strangers for any purpose. But I’m glad to know that these events are out there, and I will make it my mission to get myself to the next one.
Thank you to both of you for your brutal honesty, your willingness to share your experiences and for your passion for making the world a place with less fucking cancer.
Hi Heidi! Thank you so much for your comments. I can definitely understand not wanting to think about cancer, especially not wanting to think about the many painful stories out there and of those who have lost their battles. For the longest time I rejected the term “cancer survivor” because I couldn’t understand why for the life of me I would want to define myself in any way using that terrible C-word. But over time I can to realize (or admit?) that for better or for worse, my experience with cancer has partly shaped who I am today. And of course, it’s the “survivor” part that defines me, not the “cancer” part.
I’m 41 now so no longer technically a “young adult” myself. But I find Stupid Cancer and these OMG summits to be invaluable, if for nothing else but the sense of belonging and finding other people who “get” it. I found myself able to open up and talk about anything with an ease I hadn’t experienced before. True, if you’re a capital-I-Introvert there’s still the issue of walking into a room of people you don’t know and starting up a conversation, but I think that overall the conference is set up to facilitate just that. In the meantime I’m not sure if you follow Stupid Cancer on Facebook or if there are local chapters near you but personally, it’s an organization I enjoy being a part of.
I’d definitely recommend 50/50. Not sure if I’d recommend watching it alone or with others but that’s a personal decision for you to make, I guess.
Thanks again for your comments.
Thank you. You put to words feelings I’ve been fighting with for almost four years. After 3.5 years of remission, I’m battling cancer again, since the bastard’s decided to come back. You nailed what so many of us are feeling, and allowed us to experience those OMG moments with you. I can’t thank you enough.
For me, this is what struck me:
“All I know is right now, I’m alive. And while I’m alive I want to live with as much fucking color and as much vibrancy as I can muster.”
Yes. Yes, yes, yes. I live for me. I live for my kids. I live for my family. And, regardless of what comes at me, I’m going to live with color and vibrancy.
Thank you. SO MUCH.