Posts Tagged ‘advocacy’
I have had variations on the following conversation ever since I finished treatment:
I know this does not make me popular. I know some of you reading this find me coarse and unnecessarily harsh.
But you how no idea how much pressure there is to be inspiring after cancer.
Perhaps if my initiation into CancerLand had not involved losing somebody dear to me, I may have taken up this mantle and done my best to own the Heroic Survivor story.
But I came in to my diagnosis with the rawness of losing my brother, lending me a take no prisoners attitude against cancer.
I always wanted to know the goriest details. I had no romance for this experience. My oncologist marveled about me early on in my treatment, “You have no denial mechanism.”
So what does all this have to do with two of the most famous cancer patients of our day, Lance Armstrong and Susan Komen?
Like my brother, Susan Komen died at a young age. Her sister Nancy Brinker famously promised™ to help put an end to breast cancer.
I empathize greatly with the young Nancy. I know firsthand the impotence we feel as we watch somebody we love die. I understand the appeal that her organization holds, particularly for those left behind who want to do something in the wake of so much helplessness.
In becoming a legend, Susan Komen ceased to be a full person. Instead she became a symbol for her sister’s wish. Who knows what Susie was really like, since her persona has been carefully crafted by her surviving sister. (Twitter is haunted by a ghost who begs to differ with Nancy’s account of her love of pink and shopping).
Whatever the truth once was, Susan Komen has become the Noble Patient who gave her sister’s life Greater Purpose.
Then there is Lance Armstrong. Like Susan Komen, he was diagnosed with cancer at a young age. Like Susan Komen, he faced Stage 4 cancer. He not only managed to achieve remission, he became a paragon of health, winning the Tour de France an astonishing seven times.
Lance Armstrong became a legend. He beat the unbeatable, the Ultimate Survivor, becoming an inspiration to many who donned yellow bracelets and hoped to be half as lucky as he.
Many of these same people felt betrayed this past week as Lance finally admitted to doping to bolster his performance.
I was not among them.
Personally, I had long seen the limitation in his story as an exemplar: testicular cancer is one of the few cancers that is reversible at Stage 4. But details like that don’t matter in hagiography.
So while I am grateful to Livestrong for drawing attention to survivorship as a phase of cancer with its own needs for medical attention and social support, I am not heartbroken to learn that Lance’s feet are made of clay.
Lance’s legend, like sweet Susie’s, has put undue burden on plain folks like myself whose path to recovery is neither straightforward, triumphant, or full of Hallmark Channel Movie inspiration. (My friend Xeni wryly calls the saccharine survivor genre “cancer porn.”)
Lance, it turns out, is all too real. I am sure Susie was too. Lord knows her sister Nancy is.
So, Well-Meaning People, this is the answer to your question:
My life was rich before cancer took my brother from everyone who loved him.
I had gratitude before I had to go through almost two years of devastating treatments from which I am still experiencing side-effects, social, emotional, financial, and physical.
Am I humbled by my friends’ love for me? Absolutely.
Have I redoubled my commitments to be there for others in their time of need? Undoubtedly.
But, really, Well-Meaning People. This is just a deepening of what already existed for me.
If cancer were eradicated tomorrow, life would still provide plenty of adversity to remind us about what counts.
Tags: advocacy, attitude, changes, coping, daily life, essay, gratitude, healthy people, identity loss, Lance Armstrong, mental health, self-advocacy, straight talk
Posted in Survivorship | 19 Comments »
This guest post comes from a friend who lost her mother to ovarian cancer. Jennifer Harbel, a family friend, was full of empathy for what my children might be experiencing as I went through treatment. She wrote me notes of support, expressing her compassion for the children’s experience. Jenn has also been sympathetic to my frustration with Pinktober, and she shares her views in this moving tribute to her mother, who died when Jenn was 16.
The other day I realized it’s Banned Books Week. Which was a relief, since I thought I’d missed it for the first time in my memory. Out with the guilt and on with the celebration!
Because in my family Banned Books Week has always been celebrated. On the last Sunday in September my mom – a librarian, of course – would take my brother and I to the library to pick out seven banned or challenged books, one for each day of BBW. When I was little, we read picture books like Hansel & Gretel and The Lorax. As I got older we read titles like James and the Giant Peach and A Wrinkle in Time. Not only did we read banned books, we also discussed why each book was challenged or outright banned.
My mom was an outspoken advocate for BBW. She would tell the neighbors and our friends’ parents about it, and even offered to take their kids with us to the library. A few of them actually took her up on it, though I sometimes wonder how much choice they were really given.
Mom not only spoke her mind, but she was also what you would call strict. She brooked no nonsense (I’m pretty sure I learned that phrase straight from her) and one didn’t often challenge her authority without dire consequence. Yet, for one week a year we focused on reading books – great, fantastic books – that some people in authority claimed were dangerous.
The books we chose were chosen for that one reason alone; because some people said that we shouldn’t read them. We made a statement by checking those books out. We were saying that they were worth reading. That the ideas in them were worth knowing, that the books were vital and necessary to somebody.
Our act of reading was sedition. It carried with it a sense of duty. It is an act that is both deviant and righteous.
Every year during BBW I visit the library and check out a banned book. I return it late. I pay my fine in person, so that a human has to discover which book it is (computer checkouts are so handy, but so impersonal). And, if the librarian doesn’t remark on the title, I make sure to point it out. Because I want them to know.
This year Banned Books Week extends mostly into October. I have a love/hate relationship with this month. I like it because it’s usually early autumn and the air is crisp and light. The new-schoolbook smell still lingers. A few relatives and friends have birthdays to celebrate. It’s apple and fall squash season.
But, there are things I hate about October, too. Like my mom’s birthday on the 17th. At the beginning of the month I always think my mom would be xx years old this month. I feel a little sad, but not too sad because she wouldn’t be that old just yet. And it wouldn’t have been xx amount of years that we’ve been without her either, because she died in March.
As each day nears closer to her birthday, I feel like my sadness should exponentially increase. Then life gets in the way and I go to work, birthday parties, meet up with someone for drinks, etc., until I wake up and realize that today would be her birthday and that I should remember to give myself permission to be sad sometime during the day. Or, I remember in the evening that I should have been sadder that day because it was mom’s birthday and she isn’t here to celebrate it. Or, worse – it’s a few days after the 17th and I feel like crap for not feeling like crap on the actual day, that the 17th had been a good day, if not a great day. And then remembering the happiness I felt on her birthday makes me feel even crappier.
I also hate October because it’s Pinktober, or Breast Cancer Awareness Month. And, yes, I feel deviant and righteous about this view. My mom died of cancer. Not the good, hip-to-have kind of cancer. She died of ovarian cancer, with a small ‘o.’ The kind that’s hard to detect and therefore usually too late to cure when it is finally detected. The highest-rate-of-feminine-cancer-mortality kind, a rate that has remained virtually unchanged since 1987 according to the National Cancer Institute (5 yr survival rate = 46%). Not feminine, like girly or sexy, but as in “not male,” therefore not as many research dollars are thrown at ovarian cancer as is prostate cancer. Or, maybe the out-of-sight, out-of-mind rule applies since no man can give one of your ovaries a squeeze unless he’s your OB/GYN and you’ve made an appointment. I realize this makes me sound bitter and I won’t bore you with the details, but I can’t tell you how many times in more than two decades I’ve somehow been pressured to feel guilty for daring to mourn my mom in October – because she didn’t die of the type of cancer we’re supposed to be focusing on this month. I hate the fact that though there are many different types of cancer, over 200 in fact, only one month for one form of cancer garners so much of our attention as a nation. I think that ALL cancer sucks all of the time.
As you may have guessed, I resented October long before it became known among the cancer community as Pinktober. It overshadows the cancer awareness efforts and research for all the other forms of cancer, with the added bonus of guilt thrown in if you don’t buy into the whole cause. Like when purchasing a product in October, you must choose the pink one because hey, you needed it anyway, you like the color pink, and a whole 30¢ goes to “the cure” right? Breast cancer (unlike other cancer?) is like, scary and stuff, and we should do everything we can to raise awareness. As if wearing pink or a pink ribbon some time in the span of 30 days transforms you into a good person. Purchasing something pink doesn’t change you, and it almost certainly doesn’t change a damn thing about cancer.
Let me explain. A few years ago a friend in my community was told by her doctor that she had breast cancer. She told her friends and family about it. Then, she told the world about it through her cancer blog. We who read her blog have followed her long journey to being cancer-free again. Her journey sucked. And what really sucks is that the journey continues. Because the truth is, for everyone who has had cancer and beaten it there is always the fear that the cancer will come back. For cancer survivors and their families the journey evolves into one of vigilance tinged with fear. I pray that one day a cure is really found so that that no one will have to embark on these unwanted and undeserved journeys in the future. Anyway, it was on her blog that I first learned about Pinktober.
The main thing to learn about Pinktober is that Breast Cancer Awareness Month is a really, really sick joke. Whose punchline is so much a travesty that it should be made a crime. False advertising, fraud, coercive monopoly. Because the truth is, less than 20% of money raised for The Cure™ (capital letters and the trademark this time) actually goes towards finding a cure through research. Let me repeat that: less than 20% goes towards an actual cure. The vast majority of profit from your pink purchase goes to the manufacturer of course. What little money is left is divvied up for more unnecessary awareness campaigns (has anyone on the planet not heard of breast cancer yet?), the overhead for running the unnecessary awareness campaigns, a race/walk event, and for increasing net assets. While 17% goes toward treatment and screening, let’s not forget the purpose of this organization is for the trademarked cure. There only one word in my vocabulary that describes it: reprehensible.
If you’ve made it this far in what has turned into a lengthy essay, my sincere congratulations and appreciation. I’m about to check out of this one-sided conversation and I’m writing it.
In conclusion, I’d like you to know:
- I wore a pink t-shirt this past Sunday, September 30 (The beginning of Banned Books Week! Coincidence or my subconscious working, I’m not sure) with the exact forethought of not wearing it again for the next 30 days. Proudly deviant and righteous. If you’re mad at me about it, I suggest that you go back and read the whole essay above so that you can at least try to understand me before you send me an angry email about your views.
- I may wear a teal shirt on the 17th for Mom’s birthday. As I mentioned somewhere above (in case you skipped it), I’ll likely forget the significance of the day on the day in question, so please don’t email me or ask on Facebook what I’m wearing. On second thought, it will never be a good idea to ask what I’m wearing whether it be on FB, twitter, email, or on the phone. Not. Ever.
- Before you buy pink, think. Do you know if any portion of your purchase goes towards charity? Some companies make a blanket donation then sell pink products to promote their partnership – whether or not you purchase their product. Visit Think Before You Pink for more information.
Tags: advocacy, cancer orphans, co-surviving, coping, courage, daily life, essay, grief, parenting
Posted in End of Life | 6 Comments »
I had my (almost) 3 year follow up appointment this past week.
The good news: NED.
The bad news: The life of an oncology patient is still often beneath my dignity.
I arrived to the clinic early. Since I am a patient in a teaching and research hospital, this often means I get to help the new residents practice their clinical skills. I am an educator, so I believe in the value of this kind of training.
It’s just sometimes hard to take when I have lost a night’s sleep worrying about impending lab results.
So the newbie doctor went through his clumsy interview. I confess I was not a patient patient as he (re-)explained many aspects of my treatment and the side effects I am experiencing.
I thought, Oh really? The shooting pain down my arm might be nerve damage and lymphedema?
Yeah. I know. I’ve been going to physical therapy twice a week.
He proposed Cymbalta for the nerve pain. I brusquely told him that I am a Side Effect Queen.
Drugs are seldom worth the trade off for me.
I could tell he wanted me to like him and put him at ease, but I didn’t really feel it was my job. He has to get used to us oncology folk.
Then my real doctor came in and did her thing. I was relieved. She too wanted to talk me into the Cymbalta for my nerve pain.
Did the Cymbalta people take you out to a nice dinner at the last ASCO meeting? I joked.
No, they don’t make enough money off of me.
She knows how to roll with me. This is why I love her. She continued, joining in on the snark.
This is a low dose. It’s like licking a f***ing pill. If you don’t like it stop. But it won’t hurt you to try and it could help.
I turned to Junior Doctor and said, Watch and learn from the master.
I agreed to try the Cymbalta.
As my doc continued her thing, I noticed that the young one had started fiddling on his iPhone.
I felt my heart rate go up. A half dozen call-outs flashed through my mind.
Really? That camera is pointed right at me dude. Are you live tweeting your clinics? What’s the hashtag?
I can tweet it too and let my followers weigh in. Oh are you Instagramming? I’m pretty sure that violates HIPAA.
When he left the room for the exam portion of the appointment, I said to my doc,
Dude was on his iPhone. Not cool. You need to say something about it.
I will, she assured me.
After the appointment, I blew off some steam by posting about the incident to my social media peeps.
They came up with some snappy comebacks too:
Dr. Douche, does the AppStore have anything to help me find a better oncologist?
Hi. Is it Doctor X? Hi Dr. X. I’ll just take that from you: It’s distracting. You can pick it up from me at the end of my consultation.
So sorry. Is my medical appointment interrupting your texting?
This cap fest was gratifying in a sophomoric kind of way.
But I realized what I really wanted to do was get him to realize that this meeting was not about him.
To give him a good dose of empathy.
Listen, Doctor. I am sure you are a smart guy and have done well in school and studied hard to get to where you are.
Can you imagine that I did that too? I built my life, was moving forward, taking care of myself, my career, my family and then BAM! CANCER.
You are new to My Cancer but I am old hat now. I have been doing this for 3 years. Three effing years. Every time I come to one of these appointments, it feels like a lot of bull. All the pain, all the fear, all the bad times come back to the surface for me as I sit in this office, waiting for my latest news.
Treat me with humility: you don’t know the extent of my experience. Offer me information with the understanding that I may have heard this before: this has been my life. Don’t expect me to reassure you: that is not my job. I have a lot on my plate. You need to get your affirmation elsewhere
Oh, and also?
Put away that damned phone.
I realize that NED gives me the luxury to bitch about these details. I am grateful.
I hope that my griping helps those of you who are in treatment or are dealing with long term disease.
I emailed my doctor to make sure she followed up on the phone. She did. Doctor Junior is sorry and won’t do it again.
I kicked the Cymbalta after one dose. It made me unspeakably nauseous. The Side Effect Queen continues her reign.
Tags: advocacy, awkwardness, changes, coping, doctor-patient interaction, education, identity loss, mental health, self-advocacy, social media, support, what not to say
Posted in Survivorship, Treatment | 15 Comments »
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.
Tags: advocacy, anger, attitude, changes, coping, courage, essay, grief, guest post, mental health, spirituality, support
Posted in Survivorship | 24 Comments »
Picture what it is like, being in the hospital.
The sterile, enclosed environment. The fluorescent lights, the rooms designed for medical treatment, not for any kind of aesthetic pleasure. The machines ominously whirring and bleeping. The periodic sounds of crisis in the hallways. The shadows of mortality and frailty. The bland, institutional food. The strangers who come in, announce their names with varying degrees of engagement, perform tests, invade your body, give treatments that cure but hurt. Isolation from family and friends. Pain, discomfort, frustration, uncertainty, followed by hurried interactions filled with obtuse, technical language.
What is the opposite of being in the hospital?
Cancer retreats always seem to provide an answer to this question. I’ve been to a few now, so let me explain.
Life Beyond Cancer said that the opposite of a hospital is a spa-like retreat. We had a program of activities at a calm and self-directed pace, delicious healthful food, companionship, inspiration, and activities to soothe and heal the body.
Little Pink Houses of Hope sets its retreats at the beach: fresh air, sand, the expansive ocean, and sunshine. Our days were filled with art, outings, no financial stress and quality family time.
This past weekend, I had the pleasure of going to the OMG! Cancer Summit For Young Adults with StupidCancer.com.
(Faithful readers may remember that they are the group with whom I ran my first post-treatment half marathon.)
Stupid Cancer has a different answer to the Opposite-of-a-Hospital question:
Photo by John Sabia
Literary theorists talk about the human need to turn the World Upside Down (WUD). Think Charlie in the Chocolate Factory or Dorothy in Oz. It’s a way of regaining equilibrium, particularly after a stressful situation.
My belief that cancer retreats seek the Opposite-of-the-Hospital to help us regain equilibrium.
Vegas definitely turns the hospital world upside down. Raunchy, smoke-filled, hedonistic, youthful, indulgent, living in the moment, sin, impulsiveness, swaths of people, over-the-top spectacles, the cacophony of music and slots.
More importantly, the conference itself was terrific.
Workshops focused on a combination of social and emotional issues relevant to young adult survivors: sexuality and body image, dating and relationships, spirituality, links to the environment, careers, insurance, advocacy.
Then we would do things like dance to a DJ in a rooftop nightclub.
Screenwriter Will Reiser spoke with Stupid Cancer founder Matthew Zachary on Saturday after receiving the first ever Extreme Survivor Award for 50/50, his film about a young adult diagnosed with cancer.
Will Reiser & me. He’s a super nice guy.
That night, we had a midnight showing of 50/50. It’s a great film that captures many of the truths of young adult cancer, despite the few inevitable Hollywood touches.
Although I had seen it before, there was something unspeakably wonderful about sitting in a room full of young adult cancer survivors. We bonded through knowing laughter and deeply pained tears of recognition. At the end, my companions and I had filled our table top with tissues. We needed no words to explain the sobbing that overtook so many of us.
But tequila helped.
What happens in Vegas gets posted on the Interwebs. But it was a moment worth remembering.
I was invited to speak on a panel on life after treatment.
(YouTube video forthcoming…)
My friend Naveh says with my purse out front it looks like I walked in off the street
and strolled up on stage saying, “Let’s do this thing!” then went shopping.
When you meet other young adults who have been through cancer, you can tell your back-story in two sentences. In normal life, it takes paragraphs to explain a cancer experience. Even if you get that far, it never adequately captures the experience.
Starting the conversation so deep into something that has profoundly altered your life allows you different kinds of conversations and connections, the kind that deepen your own understanding of your self and something that has touched you at your core.
That kind of experience, without a doubt, is the World Upside-Down.
Tags: advocacy, attitude, body issues, changes, coping, daily life, gratitude, hope, identity loss, mental health, self-advocacy, stupid cancer, support, survivorship
Posted in Survivorship | 14 Comments »