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Kate Granger

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We’re all dying.

It’s true, and no matter how hard we try to convince ourselves otherwise, there’s no denying our inevitable collective fate. Plastic surgery and Botox won’t save you. Two hours a day at Gold’s Gym won’t, either. You can eat 100 carrots, jog 20 miles, try the lifetime juice diet. Whatever. Come day’s end, we all cease to exist.

The question is: How to use the time we’re given?

Kate Granger has asked herself this quite a bit since 2011, when she was first diagnosed with sarcoma, a rare-yet-terminal form of cancer. At the time, she was a 29-year-old elderly medicine registrar at St. James University Hospital in Leeds, and the news—naturally—hit her like a Mike Tyson hook to the ribs. As a doctor, she had certainly been around death. But …. she was dying? How could this be? Why me? Why now?

Shortly after the diagnosis, Granger made the decision to live. She created an amazing bucket list—and is tackling the items one by one. She has written two books—The Other Side and The Bright Side, chronicling her journey (all proceeded benefit the Yorkshire Cancer Centre). She blogs regularly, and kicked off a social media movement (#HelloMyNameIs) to, in her words, “encourage and remind healthcare staff about the importance of introductions in the delivery of care.” She has thought long and hard about life, about death, about legacy, about love. You can follow Kate on Twitter here, learn more about #HelloMyNameIs here and visit her personal website/blog here.

It’s an honor to welcome our 196th Quaz, Kate Granger …

JEFF PEARLMAN: Kate, I’m gonna start this very bluntly. You are dying of cancer. What is it like to be dying of cancer?

KATE GRANGER: Well, I wouldn’t have chosen it if you’d asked me what my life ambitions were in my early 20s. However, in some ways it has allowed me to make sure my friends and family know I love them and to do some amazing activities over the past three years. I think of it as a kind of gremlin we now carry with us every single day, which sometimes sits quietly and allows me to live my life relatively normally, but sometimes chooses to prod me hard to make sure I know it’s still there. My cancer causes lots of pain, particularly at night so my sleep is disturbed and I’m reliant on strong painkillers to be able to function day to day. However to anyone glancing at me in the street they’d probably see a normal, healthy-looking girl. I struggle with that all-too-common comment, “You look really well!”—especially when I’m feeling rubbish. The invisible effects of dying mean that I carry a huge burden of fears, anxieties and uncertainty about my nonexistent future. I can’t plan anything more than a few months in advance and a common response to wedding invitations is, “I’d love to come, if I’m still alive.” The only way to cope with it, I’ve found, is to live by a one-day-at-a-time mantra, embracing humour as a coping mechanism and trying to enjoy every last little piece of life that I’m lucky enough to have.

J.P.: I have long suffered from a horrible, sometimes crippling fear of dying. It’s not the act itself (cancer, plane crash, drowning, etc). No, it’s being dead. Not existing. No consciousness, no awareness. Just being nothing. I tell this to others and they usually blow it off—with either God talk or the ol’ “You’re dead, so you don’t know you’re dead. What’s so awful?” Neither soothes me. As someone who has surely given her mortality quite a bit of thought, I’m fascinated by what you think …

K.G.: I’m scared of the non-existential aspect of dying, too. I’m scared of the process of actually dying more though—the chances are that my dying will involve bowel obstruction, bleeding and pain. And being unable to control those horrible symptoms is a hugely scary prospect. I’ve seen lots of patients die in similar circumstances throughout my career so my professional experience doesn’t really offer any comfort. I think the aspect that causes me most distress though is the pain I’ll cause my husband Chris and my family when I do die; that I won’t be there to comfort them; that I will be the source of their tears. I was brought up in the Christian faith and we were married in church, but illness seems to have pushed any faith I did have away. I can’t remember the last time I went to church and I’m not sure I even believe in God anymore.

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Checked off the bucket list.

J.P.: Here’s what I know: You have a husband, Chris. You live and work in Yorkshire. You graduated from Edinburgh University in 2005 and passed your MRCP in 2008. But what’s your journey? Like, why did you become a doctor? When did you decide to become a doctor? What sort of medicine do you focus upon?

K.G.: When I was little my mum used to volunteer at a day centre for older people with mental health problems. She used to cook the lunch once a week and in the school holidays I used to go along and help. I loved sitting and chatting with the older people there, playing Bingo and doing crafts. I think that’s where the foundations of my career to become a geriatrician were laid. I was bright at school and worked hard so with my love of people and science it seemed obvious to go for medicine. I was educated at state school but was a very under-confident teenager. I didn’t get a place at university in the first round of offers, but when I was studying for my final A-level exams I received a phone call from the admissions dean at Edinburgh offering me a place to study there. I was obviously elated at this news and didn’t stop smiling for at least a week. All through university I enjoyed the medical as opposed to the surgical specialties and the specialty I loved above all was elderly medicine. I loved the challenge of diagnosis, the variety, the people. I was fascinated by how very different one 90-year old is from the next. The stories patients have to tell and the context of their illnesses within their lives still excites me today. I have trained for 10 years post graduation and have for the past three months been acting up into a consultant role in medicine for older people. It has been hugely exhausting, challenging and scary but wonderful all the same. Many of my professional ambitions  were stolen when I was diagnosed so to have the chance to do the job I’ve spend 15 years of my life training for has been amazing and a huge tick on the bucket list.

J.P.: You were diagnosed in 2011 with a rare and aggressive form of sarcoma. How did you know something was wrong? How long did you wait before seeing a doctor? How was the awful news delivered, and how did you initially respond?

K.G.: I was 29 and working hard as a medical registrar doing long days and night shifts. I’d been studying for my last set of post-graduate exams. So I felt tired. Understandably so, but looking back perhaps that fatigue was the first pointer to something being wrong. I then missed a period. I did a pregnancy test which was negative so I didn’t think much of it. Then Chris and I took a holiday to California. His aunty and uncle live in Santa Cruz in California and we love that part of the world. I had back pain when we stepped off the plane but thought I’d just slept awkwardly. I took some painkillers and got on with our holiday. We were very busy exploring San Francisco, Monterey and spending time with family. My symptoms weren’t going away though, and I started to go off my food. I just couldn’t eat—it was really weird. The pain was becoming unbearable. Eventually Chris found me lying on our bed in agony and put his foot down. His uncle took us to an urgent care centre where the doctor thought I looked unwell and referred us to the local emergency room. Within an hour of being in the hospital it became apparent that I was indeed very sick. My kidneys had failed and an ultrasound scan showed my kidneys were swollen. A CT scan showed the reason for my sudden illness; multiple tumours throughout my abdomen and pelvis, obstructing my ureters and causing the renal failure. I’d worked out I had cancer before they told me; there was no other reasonable explanation for the early test results. The doctor who told me stood near the door of my side room with his arms crossed and his back against the wall. He said, “We think it’s ovarian.” He didn’t finish the sentence with the scary big C word. I remember being calm and collected. I had to protect and shield Chris. I had to take charge of telling my family thousands of miles away. It was not a time for hysterics. I had to concentrate on the immediate hurdle of getting well enough to fly home.

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With Chris, the hubby.

J.P.: You’ve started an amazing movement, the #HelloMyNameIs campaign, to “encourage and remind healthcare staff about the importance of introductions in the delivery of care.” Which strikes me as sort of strange, in that, well, why wouldn’t a doctor introduce himself/herself? Why wouldn’t a doctor ooze compassion, humanity, empathy? So, Kate, why was this needed?

K.G.: In the UK healthcare is publicly funded and in the recent times of austerity that funding has been squeezed. This means everybody delivering healthcare in the NHS is under immense pressure. I think when that is the case and you are incredibly busy the first thing that tends to suffer is the compassion staff feel able to deliver. Somewhere we’ve gone wrong and along the way forgotten the basics of care and the person on the receiving end. I started the #HelloMyNameIs movement in 2013 after an experience in hospital where I’d been admitted to a surgical ward with post-operative sepsis following a routine stent exchange. I’m a keen observer of my healthcare and one of my starkest observations on that occasion was that very few staff introduced themselves to me before they started interacting with me. This felt very wrong, as the first thing we are taught in medical school clinical skills sessions is that you start with introducing yourself, your role, asking what the patient would like to be called and explaining what you’re going to do. So I decided, after discovering on Twitter that my experience was not unique, to do something positive about it. Hence #hellomynameis was born. I think it is needed to remind healthcare staff, by using my fairly powerful narrative, that the little things do matter and mean a huge amount to patients, and that delivering truly person-centred care can benefit both patient and staff alike. It is essentially a gentle reminder to inspire and encourage a change in personal behaviour of healthcare staff by harnessing the immense reach and power of social media.

J.P.: In your Nov. 23, 2014 blog entry you wrote this: “Charlie. That was what we planned to call our first born in honour and remembrance of Chris’s paternal Grandfather. But Charlie will always remain in our dreams and never become a reality. I will never have those precious new-born cuddles or experience the wonder of childbirth.” Kate, how have you been able to deal with these things? With the child you’ll never have? The events you miss? Because you seem to possess a profound bravery most people surely lack.

K.G.: Life is what it is. I can’t change what’s happening to Chris and me. We try our absolute hardest to live in the now most of the time. However, I am reflective about my losses and grief in my writing and the space of my blog and books; I guess as a cathartic exercise. I’ve been lucky to have been given much more time than we ever expected. I’ve managed to get to perform those bridesmaid and wedding cake baking duties; I’ve managed to get to know those children I never thought I’d see born. I have to be grateful for those things. I don’t see it as brave because being brave implies making a choice to act in a certain way. I haven’t had any choice about what has happened to us so we just take it each day as it comes. I do shed tears for Charlie, for the life we should have had, for the guilt of not being a complete wife for Chris and causing him pain, for not giving my parents grandchildren. But if I allow myself to dwell on those things I would be overwhelmed by depression and anger so I simply don’t allow myself to. I suppose that is my choice, so that could be viewed as brave.

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J.P.: You decided to blog about dying–in v-e-r-y detailed, gripping passages (“Why had you come along to ruin our lives? Abolished dreams of having my own family? Stolen my lifelong ambition to become a Consultant Geriatrician? Chris and I would never grow old together and be able to spoil our Grandchildren”). First, why? And second, do you find it more exhausting or exhilarating? Is it therapy? Painful therapy? You trying to leave a legacy? Both? All? Neither?

K.G.: Writing was not part of my life before illness. During those early days of a six-week hospital admission when I was very sick and the outlook was especially grim my boss at the time suggested to me the idea of writing a diary. It had helped his late sister gather her thoughts and deal with her emotions during her cancer journey. So I did and kept a diary, initially in a notebook, and when the notebook was full on my laptop. It grew into almost an obsession and during long, painful, lonely nights I would take solace in pouring my feelings and observations out onto the page. I wasn’t trying to write a book—not initially anyway. When I read back what I’d written it became clear to me it held a message and that message was to healthcare staff. It had become apparent to me that how the people looking after me behaved, whether that be in a positive or a negative way, had a profound impact on my experience as the patient. Those messages were not ones that I had considered much in my medical training before illness. Sharing my experiences as “one of them” but “one of us” seemed like the right thing to do. One of my passions professionally is medical education and I guess writing is kind of teaching … I enjoy writing and I do find it therapeutic. I like to try and say the “unsaid” to try and stimulate conversation and trigger reflections from others. It is comforting to me that my blog will exist long after I’m gone as a permanent record of my journey. Legacies are important to me. I really don’t want to be remembered as “that poor young doctor who died of a rare cancer before her time,” but rather someone who made a positive improvement to healthcare.

J.P.: Do you feel like people approach you differently since cancer was diagnosed? I mean, are there those who overdo it, those who stay far away? And, going through this, what would you advise people to do, if a friend has cancer? Is there a proper emotional/behavioral response?

K.G.: Inevitably … I want to just be treated as Kate. The Kate that I always was. Just because I have a serious disease doesn’t mean that I don’t still enjoy the same things in life; have the same values. I hate being treated with kid gloves—independence is so important to me. But cancer is part of me now and does mean things are different. I’ve always been the sort of person who has a small circle of close friends and that hasn’t changed. I’m also quite happy in my own company much of the time. I know those people are there for me no matter what, but they don’t smother us with attention. I’m not sure there is a ‘correct’ response to support a friend on a cancer journey as everyone’s needs are so individual. I think remembering the importance of ongoing support after diagnosis is essential though. People can be quick to send cards and presents in the beginning but putting the effort into being there for the long haul means a lot more to me personally.

J.P.: What do you think people, in day to day life, fail to see? Fail to grasp? Fail to do?

K.G.: I think it is very tough for people who look at me to see someone who is not going to get better, who is dying. I have fairly clear skin, glossy hair and I’m certainly not skinny. Even at my most sick I didn’t outwardly look that unwell. I’m also incredibly open about the fact that my life is going to be cut short prematurely and regularly speak about the ‘D’ word. I’m sure trying to associate those two disparate factors can be difficult for people. Because I’ve defied the odds in terms of my prognosis I think many people think I’m invincible. I hear, “You’re not really going to die though, are you?” I am. I always try to keep the realist view of what’s happening.

I’ve often been faced with people who perhaps haven’t seen me in a while who are in fact rendered completely speechless by the situation. They always seem to have those sad, sympathetic, “But you’re too young” eyes. Everyone wanted to be involved at the beginning—we were overwhelmed with messages and visits. But as time has dragged on we’ve found out who our true friends are; those people who have kept up their support week in and week out; and those who have disappeared from the scene. I keep many of my symptoms to myself and don’t allow most people to see my suffering publicly. Chris is the only one who really sees how unwell I become with chemotherapy; the tears at 2 am because I’m in so much pain I can’t move. We are blessed, though, to be surrounded by some wonderful support and are extremely lucky in that respect.

J.P.: I love your bucket list—especially your accomplished goals of making brioche, riding a horse, skydive, visit Venice and getting a tattoo (which, sort of ironically, is listed right above visiting Anne Frank’s house). So tell me, Kate, what was skydiving like? What’s the tattoo, and where’s it located? What was the horse’s name, how was the brioche? And what did you think of Venice?

K.G.: My bucket list has given everyone in my life such a positive focus to create special memories not associated with illness and has led to some amazing experiences. Skydiving was simply awesome—I’ve never done anything like that before but I loved it and would do it again. It was such a rush. The tattoo is a small, pretty purple butterfly on my left ankle. The horse was called Harvey and was very patient with me after so many years since I’d be in the saddle. The brioche turned out really well. I love to cook and bake, and some of the items on the list are about learning new skills. Michel Roux, Jr. who is a famous French chef in the UK, gave me a lesson in brioche baking at his restaurant. With all his tips I’ve made it at home successfully twice now and it was delicious (if I do say so myself!). Venice was beautiful—we’d always talked about going but never quite got there. I loved the Rialto market, the ice cream and the tiny back streets crammed full of a huge array of different shops. We nearly fell out of a gondola on the Grand Canal when we got a little too close to a large boat! I would say my favourite item on the list though has been renewing our wedding vows. It was an incredibly emotional and special day.

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QUAZ EXPRESS WITH KATE GRANGER:

• Rank in order (favorite to least): David Beckham, Jet Li, Temple Newsam, Pride and Prejudice, Ed Sheeran, Nas, Kobe Bryant, opera, your wedding ring, the smell of armpit, paper airplanes: My wedding ring, Pride and Prejudice, Temple Newsam (if you mean the Tudor-Jacobean house with beautiful grounds near Leeds!), Ed Sheeran, Paper airplanes, David Beckham, Jet Li, Smell of armpits (Had to Google Nas and Kobe Bryant—so not sure I can have a view of them!)

• Three things you can tell me about your husband, Chris: He’s like a human calculator—if you ask him any mental arithmetic he’ll give you the correct answer straight away. He’s amazing at blagging free stuff which has meant my bucket list has been extra special. He’s a keen walker and has done some amazingly long hikes for charity.

• Should there be another A-Team movie? And do you like the idea of Rampage Jackson filling Mr. T’s shoes?: I’m not really that bothered for me, but if the A-Team fans have an appetite for another movie then fine. I wouldn’t be first in the queue at the cinema to see it though.

• I’m starting to have lots of hair growing from my ears. What should I do?: Don’t stress. Life’s too short.

• What are three things that should immediately turn a person off of a new doctor?: As a patient you form a judgement of a doctor extremely quickly. For me it’s when someone fails to introduce themselves, stands over you when you are in bed or has disinterested body body language such as lack of eye contact.

• If you could have lunch with five celebrities, who would they be?: Michelle Obama, HRH Duchess of Cambridge, Stephen Hawking, Colin Firth and James Galway.

• Tell me the best joke you know: A bit childish but someone told me this one the other day: ‘Doctor, doctor, I’ve got something wrong with my eyes. I keep seeing an insect spinning round my head.’ ‘Don’t worry, that’s just a bug going round.’ I’m rubbish at remembering the punch line to jokes!

• Can you create a poem, right now, that incorporates Starbucks, Cleveland, Muhammad Ali and the number eight?: Been sat in Starbucks since about 8/ They asked me my name, #hellomynameis Kate/ I’m reading an article on Muhammad Ali/ Before meeting my friend from Cleveland called Sally/ Must rush now before I am late! (Thanks to Chris for his help on this!)

• Six words that describe your knees: Pale, fat, scarred (I knelt on a piece of broken glass when playing in long grass as a little girl) and best covered up!

• You have “another visit to California” on your bucket list. I’m officially offering up my house in Southern Cal as a place to stay. You coming?: If you’re offering and I survive round 3 in the chemo boxing ring Chris and I will be there. Thank you! That’s an incredibly generous offer.

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Blog Eclectically Undefined (folks who defy a specific category) News QUAZ

Angelo Merendino

20111013-085455Here at The Quaz Headquarters (a small warehouse at 211 Paseo Del Pueblo Sur in Taos, New Mexico), there is a pecking order to things.

Generally, I have six or seven or eight Quazes waiting to go. I usually run them chronologically. Sometimes, if a topic is hot (Super Bowl, terrorism, a particular moment in time), I skip around. Not often, but sometimes.

Which leads me to Quaz No. 126.

A bunch of days ago I was jumping around Facebook when I stumbled upon a photo essay from a man named Angelo Merendino. It was—to understate—phenomenal stuff. Angelo’s beloved wife Jennifer was diagnosed with breast cancer in February 2008 (five months after their wedding), and he decided (with her encouragement) to chronicle the ensuing nightmare. The resulting pictures are … hmm … what’s the right word? Haunting. Beautiful. Stunning. Gripping. Devastating. Amazing. Awful. Piercing. I’m actually not sure—but the images have stuck with me, and also pay tribute to a wonderful woman, whose life ultimately ended in 2011.

Hence, when Angelo agreed to be Quazed, I wanted to get him here as quickly as possible; so you—dear reader—can feel the same emotion and, in a sense, understand what it is to go through something so gut-wrenching.

Angelo Merendino can be followed on Twitter here and Facebook here. You can order his book, The Battle We Didn’t Choose, here. Fifty percent of every sale will be donated to a charity, The Love You Share.

Angelo Merendino, welcome to The Quaz …

JEFF PEARLMAN: So Angelo, I stumbled upon your photo essay chronicling your wife’s battle with breast cancer—and, well, I was blown away. Blown away. It also reminded me of something from a decade back, when a friend’s father was dying, and she chronicled it all via pictures. The final shot was a tag around her deceased father’s foot. I reacted with a combination of emotions—sad, dazzled, heartbroken, confused. Angelo, what made you think, “My wife is fighting cancer—and I’m going to photograph it all?” It seems like a reaction only a photographer could have …

ANGELO MERENDINO: Thanks, Jeff. These photographs were born and made out of necessity. Jen’s cancer metastasized in April, 2010. After a few months of treatment we noticed that many people didn’t understand how serious Jen’s illness had become and we felt our support group fading away. Our words were failing to communicate our need for help so I turned to the only other form of communication I know—my camera. I started photographing our day to day life and our hope was that if our family and friends saw what we were facing every day then maybe they would have a better understanding of our challenges. We needed our family and friends to be there for us. There were no thoughts about a book or exhibitions, it was really just trying to survive.

J.P.: I would love to know about Jen. How did you meet? What was she like—specifically? What made you fall in love with her?

A.M.: I was applying for a job as a bartender in August, 2005 and Jen was the manager at the restaurant. I knew right away that she was the one … the only problem is that Jen didn’t feel the earth shake like I did! About a month later Jen took a job in Manhattan and left Cleveland. We kept in touch and during a visit to New York City the following winter I finally worked up the courage to share my feelings. We started dating long distance and after six months we couldn’t stand being away from each other so I moved to Manhattan with an engagement ring in my pocket. I proposed to Jen the night I arrived and we were married less than a year later.

Jen was full of life and love and she had a way of making you feel like you were the only person who mattered. I’ve never had a friend like Jen, someone who really cares and would tell you how she felt even if it wasn’t exactly what you wanted to hear—but you needed to hear. Jen truly cared about her family and friends and she always kept up with people to make sure they were OK.

Before I met Jen I was struggling to figure out who I was and why I was here on this earth. Jen encouraged me to follow my dreams and believe in myself. I felt like as long as Jen was by my side, everything was possible. When I met Jen I let go of all the fears of being hurt. I trusted Jen more than anyone I had ever known. It was easy being with each other. We had fun no matter what we were doing.

Screen Shot 2013-10-29 at 12.32.00 AMJ.P.: I’m sure some Freud wanna-be would look at your photos and say, “He was grieving by hiding behind his camera.” Is there truth to that? Or, put differently, did taking photos allow you to best manage the decline and, ultimately, death of your beloved wife?

A.M.: After a few months of making these photographs I realized that they would be a bridge back to the most challenging time in my life. While I was taking care of Jennifer I had to stay focused on her needs. Oftentimes I would put my thoughts off to the side. The love of my life was dying right in front of me and I couldn’t stop this from happening. I knew that if I thought too much I would crumble, and Jen needed me to stay strong. Looking back, the photographs were an escape from cancer. That is strange since I was escaping into the same thing I was escaping from. But our life was so serious and constantly “on” and I needed something that wasn’t complete cancer. I could get lost in the light-room or something camera related and sort of give myself a break.

Now, these photographs have been an incredible help in my healing. Something beautiful is growing out of something so horrible and unfair. I’ve received messages from women who are getting mammograms because of Jen. If these things weren’t happening, if something positive wasn’t coming from this, I don’t know how I could make any sense of Jen’s death. Jen was the kind of person who made good things out of what ever life put in front of her, she was an optimist. I want Jen’s legacy to help others.

Screen Shot 2013-10-29 at 12.32.42 AMJ.P.: I love that you started The Love You Share, a non-profit organization whose mission is to provide financial assistance to women in need while they are receiving treatment for breast cancer. Mainly because, in this age where there are a million enormous, corporate-overloaded pink ribbon cancer efforts, yours seems pure and righteous and uncomplicated. How did you decide to start this? And what are your thoughts on the whole Susan B. Komen, pink-ribbon movement?

A.M.: Jen and I were fortunate to receive help from many people. I can’t imagine what it would have been like without this support. Facing cancer is an enormous challenge. The day to day tasks are what we needed the most help with. A few days before Jen passed I asked her if it was OK to start a non-profit in her honor that would help others. She smiled and said, “Yes.” I just want to do something that will directly help the people who are hit the hardest by breast cancer.

I think there are good things in the pink ribbon movement, at least people are talking about breast cancer. It isn’t an easy thing to talk about. Before Jen was diagnosed we didn’t know much about cancer. I think education is very important and if we don’t talk about the reality of day to day life with breast cancer then people aren’t going to know how to help a loved one who is facing this illness. Love and understanding are two very important things that someone with breast cancer needs from loved ones. Buying a product that has a pink ribbon on it is OK, but we need more than that. My biggest problem with the pink stuff is that it can trivialize what breast cancer is really like. There was something going on this month, something about “Support breast cancer by not wearing a bra on a given day.” Huh??? I don’t know of any woman who has had her breasts removed who would find this helpful. If we just throw a few bucks in the hat and push breast cancer under the rug until next October then we really aren’t doing much.

J.P.: So you’re going about your life … happy, fruitful, etc. Then Jen finds out she has cancer. How did this happen? And when did you realize how serious it was? And would become?

A.M.: Jen was diagnosed five months after our wedding. I’ll never forget the sound of Jennifer’s voice coming through the phone as she told me she had breast cancer. I was numb immediately. I’m still numb. Before that moment, the furthest thought from my mind was that I might be a widower before I was 40. Just after our one-year anniversary our doctors told us Jennifer was cancer free and we started to put our life back together. It was a challenge because everything we thought we knew, our whole world, had been leveled and we felt so different from most everyone else in our life. Cancer was always there. Every bump or bruise, or anything Jen felt in her body, was it cancer? When Jen’s cancer metastasized in April, 2010 things got really serious. We were positive and believed our doctors would be able to keep a step ahead of Jen’s cancer but it kept spreading. When the cancer spread to the lining of Jen’s brain in October, 2011 that’s when I knew things weren’t going to get better. I think Jen knew too. We had to believe in a miracle, it was Jen’s life.

Screen Shot 2013-10-29 at 12.33.33 AMJ.P.: What’s your life journey, Angelo? Meaning, how did you go from womb to photographer? What is it about the medium that drew you in? What’s the love in picture taking?

A.M.: My first love was music. I started playing the drums at a young age and toured around the country for most of my 20s and into my 30s. At one point during that time I was taking a break from music and a girl I was dating at the time suggested that I try making a photo with her camera, a Canon AE-1 Program. I still remember the sound of the shutter—I was hooked immediately. Music was still around so I was juggling the two and it wasn’t until I started making these photographs of Jen that I realized the power of photography. I’m a sensitive person and I like to connect with people. I like listening to people as they share their experiences. I want to interpret the things in life that move me, the things I feel to be important.

Screen Shot 2013-10-29 at 12.34.17 AMJ.P.: How did Jen feel about your project? About being photographed when she was at her worst? At her lowest? Did you have to explain your reasons? Was she ever hesitant?

A.M.: After Jen was diagnosed in 2008 she became frustrated because so much of the breast cancer literature on the web was sterile and clinical. Jen wanted to find out what other women with breast cancer were feeling so she started a blog. If other women wanted to read her thoughts then the info was available. If not, that was OK, too.

Jen trusted me and knew that before I made photographs I was taking care of her—she was always first. At times Jen was using methadone to relieve pain. Whether you are using methadone medically or not doesn’t matter: the side-effects are the side-effects. We were in the hospital one night and the side-effects were kicking in. Jen was waiving her arms in her sleep and I made a photograph. A few days later we were at home and I showed the photo to Jen. I asked if it was too personal and if she wanted me to delete it. Jen said, “No, it’s real. I don’t want to hide what cancer is like.”

Screen Shot 2013-10-29 at 12.35.20 AMJ.P.: On your website, you write, “Fear, anxiety and worries were constant.
Sadly, most people do not want to hear these realities and at certain points we felt our support fading away.” This fascinates me. Why do you think people—almost universally—behave this way? Do you think we talk a good game about support and encouragement, but hate the work involved behind the words? The discomfort of seeing sickness in others and wondering if we’re next?

A.M.: I think people don’t know what to do. This is why I believe it is important to talk about illness. Plus, seeing someone who is ill puts mortality in our face. I don’t blame people for not wanting to think about death. That said, we are all going to die one day. I don’t want to discuss death at every dinner conversation but I think it is healthy to talk about life and death. Accepting that I will die one day has opened my heart to the fact that I am alive right now. I’m not saying I look forward to death but I can’t escape it so I don’t want to let it control me. The thing is, you don’t have to have the answers for someone who is ill, you just have to be there.

Screen Shot 2013-10-29 at 12.36.17 AMJ.P.: How did Jen come to accept death—if she did at all? And how did this experience impact the way you look at dying?

A.M.: I don’t know if she accepted death but what I can tell you is this. The day after we were told Jen’s liver was failing we were told that she may live another three-to-seven days. Over the next 12 days our apartment was full of love, laughter and life. Jen would smile and, like she had always done, she showed us through her actions that life is precious.

For the last few months of Jennifer’s life we would ask each other before going to sleep what the best and worst part of the day was. The day after we found out Jen’s liver was failing we came home with Hospice Care and spent the evening with family and friends. Before going to sleep I asked Jen what she loved the most about the day. Jen thought for a moment then turned and looking deeper into my eyes than ever before, she said, “I loved it all.”  I think she did find peace but I imagine she was still frightened of the unknown.

There were moments during Jen’s last day when I felt complete happiness … like I’ve never known before. Memories of Jen and me laughing together would come back in such a vivid way and I would smile and laugh. Then it would hit me that Jen was leaving me, at least on this earth, and I would do everything I could to not lose control. I guess what I’m trying to say is that there was beauty in death because Jen and I got to spend part of our life together. These were the greatest years of my life.

J.P.: Your wife died in 2011. She wanted you to live happily and fruitfully. Is that possible? How does a survivor move on? Can you date again? Love again?

Screen Shot 2013-10-29 at 12.37.01 AMA.M.: My answer today is different from what I would have told you one year ago, and I know the same would be true if you were to ask me this question a year from now. I do my best to take each day as it comes and I try to do the next right thing. Some days are better than others but above all else I am thankful to be alive and healthy. It’s the little things in life keep me between the ditches.

Jen was a widow and we shared a beautiful love. In recent weeks I have opened my heart to the thought that I may find someone again and thankfully Jen left a road map for me to follow, our love story. I’m still putting myself back together and I don’t know what is coming my way. I want to live life to the fullest.

Screen Shot 2013-10-29 at 12.37.55 AMQUAZ EXPRESS WITH ANGELO MERENDINO:

• Yours not included, what’s your favorite all-time photograph?: James Marshall’s photograph of Jimi Hendrix during sound check at the Monterey Pop Festival. This is on the cover of Marshall’s book, which was the first book of photographs I purchased. I can hear Hendrix guitar in the photo … it’s the moment that I want to capture in every photograph I make.

• What sort of equipment do you use?: I’m shooting Nikon cameras, a D4 and a D600. The photographs of Jen were mostly made with a D7000. I like fast prime lenses, my 28mm 1.8 gets the most use these days. I also enjoy shooting my 70-200 2.8.

• There are tons of iPhone apps here to make photography better, easier, cooler. Do you like this? Or is it a bullshit slap to skilled photography?: I think it depends on how you use it. If the light and moment are there, that’s what matters to me.

• Rank in order (favorite to least): Beverly Hills 90210, Richard Dawson, Braveheart, Shawn Kemp, Cannon, pumpkin pie, shaving with a blade, Costco, LL Cool J, cranberry sauce, Costa Rica: Pumpkin pie, Richard Dawson, shaving with a blade, cranberry sauce, LL Cool J, Braveheart, Shawn Kemp, Costco, Beverly Hills 90210, Costa Rica.

• Celine Dion calls. She wants you to move to Vegas and work as her personal, 12-hour-a-day photographer for a year. She’ll pay $12.5 million, but you have to legally change your name to Leon Durham and dress in an adult-sized Kermit the Frog costume. You in?: Ha! No way. I’ll stick to hustling for work in Cleveland.

• Five greatest albums of all time?: London Calling – The Clash; Born to Run – Bruce Springsteen; Donny Hathaway Live (1972); Grace – Jeff Buckley; Innervisions – Stevie Wonder.

• What’s the perfect song to whistle?: Heartbeat by Buddy Holly.

• I’m thinking of publishing a book featuring photos of my wrist wart. I’m gonna call it, “Wrist Wart.” Any interest?: Depends on the photographs …

• If you take 100 photos, how many do you delete?: The bad ones.

• One question you would ask Malcolm Jamal Warner were he here right now?: Did he keep all the sweaters he wore on The Cosby Show.

Categories
Blog Media News QUAZ

Samantha King

photo by Justin Chin.
photo by Justin Chin.

Sometimes the truth stings.

Sometimes the truth aches.

Sometimes the truth absolutely brutalizes.

Samantha King‘s truth is brutal. She is the author of Pink Ribbons, Inc.: Breast Cancer and the Politics of Philanthropy. It is a painful examination of the Susan G. Komen Foundation’s immoral and greedy methods of preying upon cancer sufferers and their family members and friends to raise money via any means necessary. It’s a story of heartbreak, of exploitation, of a rudderless movement that has lost sight of what should be the ultimate goal: Breast cancer prevention.

An associate professor of kinesiology and health studies at Queen’s University at Kingston, King’s research has focused largely upon the breast cancer fundraising industry. Here, in Quaz No. 120, she talks about the evil of pink KFC buckets, the hurt feelings of women and why, oh why, a charity with the capacity to do much much good as dropped the ball.

Samantha King, welcome to the Quaz …

JEFF PEARLMAN: Dr. King, let me start with a blunt one: Should I be disgusted by the Susan G. Komen Foundation? Because, right now, I pretty much am.

SAMANTHA KING: You have every right to feel that way. Their 2012 decision to defund Planned Parenthood, which they ultimately reversed in the wake of a major public outcry, was just the latest in a series of questionable actions which bring into doubt their commitment to women’s health. How the Komen board can justify a $684,000 salary for CEO Nancy Brinker when participation in their events has plummeted is beyond me. Following the Planned Parenthood debacle, Brinker said she would step down, but ten months later she’s still at the helm, and enjoying a 64% pay rise to boot.

J.P.: Whenever I’ve written a book, I’ve always thought—A. Does the subject interest me? B. Will it have a chance of selling? Actually, that sounds pretty calloused and corporate. Oy. Why did you write Pink Ribbons, Inc.? What was your motivation?

S.K.: I began researching the book in the late 1990s when I was a doctoral student at the University of Illinois. My goal was to understand how breast cancer had become corporate America’s favourite cause. In short, how did we go from stigma and secrecy to pink buckets of Kentucky Fried Chicken for the Cure? I’m a natural skeptic and something didn’t smell right about this transformation. I wanted to provide an honest account of the pink ribbon industry and its implications for people with the disease, for those who research and treat it, and for the culture at large.

Screen Shot 2013-09-18 at 12.48.56 AMJ.P.: I’m guessing there are many people out there—especially women—who either read your book and/or watched the documentary and feel like suckers right now. That all that fundraising and walking and mental and physical devotion was all for corporate-backed nonsense. Are they wrong to feel this way? Were they, well, suckered?

S.K.: That’s a tough question. On the one hand, when the book first came out I was pleasantly surprised by how well received it was and by the numbers of readers who told me that they had long felt uncomfortable with the overly optimistic, corporate approach to the disease. On the other hand, the shock expressed by many long term supporters about Komen’s lack of integrity in the Planned Parenthood case made it very clear to me that the public had invested a great deal of trust in Komen and the other big players in the breast cancer industry. It wasn’t just that people gave time and money to breast cancer research because everyone else was doing it; they actually believed they were doing something meaningful. And why wouldn’t they? They’ve been told that running a race, wearing a ribbon, or buying a pink vacuum would help find a cure for a horrible disease, and they’ve been shown the results: billions of dollars raised for grateful breast cancer survivors. But what they weren’t told was how little actually came out of all this, that breast cancer incidence and mortality rates remain stubbornly high and that we have basically the same treatment options as we did when the War on Cancer was launched by President Nixon more than forty years ago. These people aren’t suckers, they’ve just been mislead about the impact of their efforts.

J.P.: Why is it that the word “prevention” doesn’t seem to resonate the way “cure” does? I mean, isn’t preventing breast cancer a REALLY important thing to do? It just seems like the word hasn’t—for lack of better terming—stuck. Why?

S.K.: I don’t think it’s so much that the word doesn’t resonate, but rather that preventative research doesn’t offer the same prestige—or potential for profit—as does a focus on “the cure.” If a biomedical scientist is successful in preventing breast cancer, they don’t have much to show for their work except a bunch of healthy women (plain old women, not some advertising executive’s image of a “survivor”) who may not have developed the disease in any case. It’s also easier to keep producing mediocre treatments than it is to fundamentally restructure our society so that we may live in a clean and safe environment. As a result, we’ve spent way more time and money developing treatments than we have investigating causes. Research on prevention, and particularly on environmental links to breast cancer, should be a top priority and it should be independently funded; only then will prevention resonate more powerfully than “the cure.”

J.P.: Last year I was sitting inside a McDonald’s with my daughter, and we were reading the fine print on the bottom of a Happy Meal Box. The box was decorated with all this Ronald McDonald House stuff—but in the tiniest of letters it said, “1 cent of each purchase will go to the Ronald McDonald House.” This struck me as such bullshit, and made me think McDonald’s is only doing the House to look good and, ultimately, make more money for shareholders. Is my cynicism going too far? Can it really just be that there are a whole lot of assholes in the world willing to milk causes to increase profits?

S.K.: I’ve rarely come across a marketing executive who is ill-intentioned in developing such campaigns. The problem is that their good intentions are guided by the bottom line and as a result make a much bigger difference to the company’s brand image than they do to whatever cause they are designed to assist. From a broader perspective, I think we need to ask if we really think we’re going to solve the world’s problems by encouraging people to buy more stuff.

Screen Shot 2013-09-17 at 9.35.47 PMJ.P.: We, in journalism, use “fighting” a disease ALL the time. Is that, simply, the wrong word?

S.K.: I don’t like the militarist terminology, or the suggestion that the person with the disease has control over its outcome, but it’s extremely hard to avoid. One of my favourite moments in the film is when Barbara Ehrenreich tells the viewers, “I wasn’t battling anything. I was forcing myself to comply with the treatments my doctor recommended. Is that a battle? I don’t think so.”

J.P.: I know you teach at Queens University, I know you wrote this book—but how did you get here? As in, what was your life path to reaching this point?

S.K.: I grew up in London, England, and first came to Kingston in my early twenties to do my master’s degree. After finishing my PhD at Illinois, I worked at the University of Arizona, in Tucson, for three years, and then found myself back in Kingston. None of this was planned, but I like school and somehow never left.

Screen Shot 2013-09-17 at 9.37.59 PMJ.P.: For my money, the tipping point in this anti-movement came when KFC started with the pink ribbons. Forget that it was a miniscule amount of money (relatively). What bothered me was the selling of breasts (dead chicken ones) to “fight” for women’s breasts. It just struck me as, well, gross. What did you think of the whole KFC campaign? And did it wind up working for the company?

S.K.: Komen reached new depths of poor judgement with the KFC campaign. If high fat diets are linked to breast cancer—an unsubstantiated but nonetheless widely held belief—what was the self-described “global leader of the breast cancer movement” doing promoting a fat and sodium laden product? More pointedly, how did an organization supposedly dedicated to saving lives decide to partner with a corporation embroiled in a lawsuit with the state of California over the use of a known carcinogen—PhIP—in the preparation of its chicken? As a Facebook group that sprung up in opposition to the partnership asked: What will be next, pink cigarettes for the cure? Frankly, I wouldn’t be surprised. Given Komen’s long history of partnerships with the chemical, cosmetics, and car industries, known threats to public health are clearly not their primary concern. Perhaps because of a broader (and frequently moralizing) concern around obesity, as well as increasing recognition that food quality is an important component of good health, the Buckets for the Cure promotion did elicit a quicker and more vexed response than other dubious endeavors brought to the public by the Komen enterprise. Komen responded to the outcry by claiming that KFC offers a range of healthy menu options and placed responsibility squarely with individual consumers. The nerve!

J.P.: What has been the reaction to you and your work from the pink movement? Have they tried to discredit? Attack? Or have they meekly sighed and hope people don’t notice?

S.K.: I’ve encountered very little direct criticism. Their public relations strategy has been to stay quiet, though Nancy Brinker is interviewed in the film and viewers get to see first hand how hard it is for her to articulate a reasonable defense of the industry that she leads.

J.P.: Is there a cure for breast cancer in our future? Or is this merely a pipe dream?

S.K.: I don’t like to make predictions, and I’m no scientist. From what I read, however, it’s unlikely that there’s going to be just one cure, because there’s not just one type of breast cancer. Even if we find a bunch of cures, my preference would be that we learn what causes the disease and seek to stop it at its source.

Screen Shot 2013-09-17 at 9.35.16 PMQUAZ EXPRESS WITH SAMANTHA KING:

Last time you bought a pink piece of clothing? And what was it?: I have nothing against pink, in fact it’s one of my favourite colours, but I can’t be seen wearing it too often because people start to ask difficult questions. That said, I did buy a fluorescent pink tank about a year ago.

Should the Mets fire Terry Collins?: Who’s Terry Collins?

Five reasons for one to make  Kingston, Ontario his/her next vacation destination: 1) Limestone architecture, 2) Big Sandy Bay, 3) sunny patios, with the option to flee to 4) Toronto or 5) Montreal if the small-town charm wears thin.

I’m trying to start a charity for the Gangly Jewish Journalists of New Rochelle, N.Y. What should our symbol be?: Perhaps a visioning session is in order.

Rank in order (favorite to least)—Nancy Goodman Brinker, Montreal Expo hats, Bryan Adams, iPhone, Grand Canyon, Meg Whitman, The Color Purple (the film), Richard Pryor, seashells, Canadian bacon: 1. Grand Canyon, 2. The Color Purple (the film), 3. Richard Pryor, 4. seashells, 5. iPhone, 6. Bryan Adams, 7. Montreal Expo hats, 8. Meg Whitman, 9. Nancy Goodman Brinker, 10. Canadian bacon (I’m a vegetarian. Otherwise Brinker would be last)

Do newspapers have a future?: The Guardian, yes, but I’m not sure about the rest.

Three memories from your first date: I’m British and we don’t tend to “date.”

Would you vote Styx into the Rock n Roll Hall of Fame?: I’m musically illiterate, so I’d have to defer, or sell my vote.

Would you rather become a two-pack-per-day cigarette smoker or have two of your toes chopped off via rusty saw?: Do e-cigarettes count?

There’s a Dunkin Donuts moving in around the corner. Can my neighborhood Starbucks survive?: I would think so. Don’t they cater to different demographics?

Categories
Blog

Andrew Luck. Andrew Cohen. Goodness.

Andrew Cohen is a 6-year-old boy who lives about seven houses up the block. He is a warm, funny kid who happens to be good pals with my son, Emmett.

Two and a half years ago, Andrew developed a limp. As these things often go, everyone assumed it was nothing—until, tragically, it was something. The limp was an indicator of Neuroblastoma, a form of cancer that starts in certain types of nerve cells. (The term neuro refers to nerves, while blastoma refers to a cancer that affects immature or developing cells). Neuroblastoma occurs in infants and young children. It is rarely found in children older than 10 years.

Anyhow, since that time Andrew has been put through the ringer. Multiple treatments (chemotherapy, blood and platelet transfusions, etc), tons of missed school and missed birthday parties and, most terribly, missed health. There have been highs and lows, highs and lows. Through it all, he has remained remarkably resilient.

I digress. A couple of weeks ago Jill Cohen, Andrew’s mother, sent me this e-mail:

Hi there from Sloan. Andrew is hanging in here but we want to go home. I think we are here for the weekend. We’re missing the street. I was wondering if through your connections in sports you had anyway to get in contact with Andrew Luck? I graduated from Stanford and when we went to visit last summer the boys got into Stanford football. We actually call our Andrew our own Andrew Luck. I just read an article that showed that he shaved his head in honor of his coach and my Andrew thought it was very cool ( for obvious reasons).  Just thought an autograph or something would brighten our Andrew’s day.
Jill

Now, I don’t know Andrew Luck. I’ve never met him, never seen him in person. I also don’t know anyone with the Colts. However, as a blessed member of the sports media and a blessed former Sports Illustrated writer, I do have a connection or two. Immediately after receiving Jill’s e-mail, I reached out to a pair of old SI colleagues—the excellent Peter King and the excellent Jon Wertheim—who I knew had Colt ties. I forwarded them Jill’s words, and explained any help would be hugely appreciated. Both guys responded within hours, saying they’d give it their all.

A few days ago, the autographed football arrived at Andrew Cohen’s door. It was personalized by Andrew Luck.

I tend to whine and complain and rip professional sports. But, truth be told, there’s much goodness to come from the endeavors. The chance to make a kid’s day—hell, his life—is golden.

I’d like to thank Peter and Jon and the Colts and Andrew Luck for remembering that.