This is my makeup free selfie. No, I don’t need to wax my upper-lip – I did that last week, actually. The person in the selfie is my dad, Julian Raphael. He died on December 4th, 2013 of pancreatic cancer.
I was nominated to share a #nomakeupselfie on facebook in order to raise awareness about cancer. Initially I thought, “I have no idea what this has to do with cancer, but why not?” I’m not ashamed of my makeup-free face. I used to be. From the ages of about 15 to 25 I was afraid to leave the house without it. Now, however, I have come to really love my face without makeup – zits and all – and I would be pretty proud to show off how pretty my makeup free face is. With the right lighting, hairstyle and camera angle, I think I’d look pretty damn good. Friends would tell me how pretty I look and that I don’t really need makeup. But I already know that because I have a sense of self-worth, a bit of vanity, and wonderful boyfriend who tells me all the time, especially when I think I look my worst: “Gosh, you’re pretty!” If you’re curious about what I look like makeup-free there are already pictures of me on facebook with no makeup. My eyelashes look lighter and my cheeks look less rosy.
I absolutely love seeing my beautiful friends and family and their makeup-free faces. When I look at those pictures, I see natural beauty radiating right through my computer screen. But I already knew my friends and family were beautiful people, inside and out, fake eyelashes, no eyelashes, lipstick or no lipstick.
I am not going to post a makeup-free selfie on facebook, because those beautiful fresh faces say nothing to me about cancer – at least not as I’ve witnessed it. Those are pretty pictures and cancer is ugly. If cancer posed for a selfie, I think cancer would look like this. You might think you look like that in your makeup-free selfies, but you don’t. You look healthy and beautiful.
I watched cancer attack my father’s body. It happened quickly. He stopped eating because suddenly nothing tasted the same and digestion was too painful. The tumour on his pancreas interfered with his bile secretion, which spread to his skin and caused him to become jaundiced. This made him itch all over. He scratched his head, his neck, his face, his arms, and his legs constantly. It was hard to watch, but obviously harder to endure. He also developed diabetes as a result of the tumour.
Removing the tumour on his pancreas meant braving a nine-hour surgery called a Whipple. Recovering from the Whipple meant two-and-a-half weeks in the hospital. For a week and a half he was only allowed ice chips to eat. He said not being able to taste anything but chlorinated water infused with a plastic flavour from the ice bucket was enough to drive him crazy. He experienced intense pain during his recovery from the Whipple procedure, as well as infection and digestion problems as his body tried to repair itself sans gall bladder, part of his stomach, pancreas, his duodenum, bile duct, bowel, etc. Now, imagine how silly “cancer awareness sans makeup” sounds. This is cancer awareness sans stomach.
He began chemotherapy after he had recovered enough from the surgery. It was awful to see him endure the side effects of chemotherapy, so much so that I think I have blocked this from my mind. I just remember him being very sick and tired. I think at times he tried to conceal how uncomfortable he was to make us feel more comfortable, but a few times, when he didn’t know I was looking, I saw him hunched over holding his stomach. And I heard him vomiting and saw the sweat-soaked sheets on the rare occasions he could get out of bed.
Dad was diagnosed in October of 2012 and by June of 2013, I thought I had witnessed an extreme and horrible deterioration. But I didn’t know what he was in for in the following months. There was a brief period of time that summer that dad was cancer free, but it came back, and it came back quickly. I saw Dad writhing in pain up on Shirley and Barry’s cabin deck after the fishing derby he fished in every year. He cried, and we all cried for him. In September, Mom and Dad went to England and he spent an awful night in the emergency room. He rolled around on the waiting room floor in agony for hours until a nurse finally got help. They cut their trip short and came home to Canada. That wasn’t the end of emergency room nights, though. In intense pain, he was wheeled out of our house on a stretcher and taken to the ER by ambulance at two in the morning one day. He then went into palliative care for a few weeks, where his doctors struggled to manage his intense pain despite their best efforts. According to Dad’s own reports, on a scale from 1 to 10, it was never below 4 and often at 9 or 10.
Dad’s doctors were eventually able to manage his pain, but this is not to say that he was free of pain when he died. He couldn’t communicate verbally anymore in the three or four days leading up to his death. But I know that the night before he died he was in intense pain – I think from lying in the same position too long, despite attempts by my mom and I to shift him into a more comfortable one. The morning of the day he died, his pain medication pump malfunctioned and he was in agony. We didn’t know how to help him.
I learned what Cheyne-Stokes breathing is in the final days of my dad’s life. Cheyne-Stokes is the ugliest thing I have ever witnessed. Today, if I hear the slightest gurgle of saliva or mucous in a person’s throat, I flashback immediately to those long days and sleepless nights sitting by dad’s bed listening him gurgle and choke on the liquid in his throat. Several nurses told me that Cheyne-Stokes is not uncomfortable for the dying person, but it is definitely uncomfortable to listen to.
I watched my dad take his final breaths. I won’t describe it in detail here, because that was a personal experience that my mom, my dad and I shared. I feel privileged that I was there when he died. But it wasn’t a pretty picture.
Throughout my dad’s illness, he often put on a very brave face. He attended my cousin’s wedding in Winnipeg, for instance, and went on a trip with my brother to California to pick up his beloved Jag. He also fished for two days with his best friend Barry during the annual fishing derby at Ferguson Bay in Saskatchewan. He went to England, went out for supper, went golfing, went for walks. The pictures of those nice days show a thin and pale, but happy man surrounded by family and friends. They paint a pretty picture of cancer, just like those selfies my beautiful friends have posted in an effort to raise “#cancerawareness”. Those pretty pictures of my dad smiling among family and friends are real, but they are only part of it.
I love those happy pictures of my dad and I look at them often. But throughout his illness, I also felt the need to document my dad’s deterioration through photographs. I don’t know why I wanted photo evidence that this happened to him – I just did. I have a picture of him after he woke up from surgery, about eleven tubes going in and out of different parts of his body – too many tubes to document. I have a picture of my dad in the ER at 6 in the morning, toxic from too much pain medication (hydromorphone perhaps – I lost track of all of the pain meds). He was hallucinating and twitching and he said later, once he was coherent, that it felt awful being toxic. I have a photo of my dad writhing in pain on a bed in palliative care while a doctor tried to help him. I also have photos of him lying in a hospital bed in our living room in the last days of his life, so thin that his eyes sunk in to his skull and his teeth looked too big for his face.
There is beauty to be found in cancer, but it is not in pictures of naturally beautiful young women. I saw lots of beauty in the 14 months from my dad’s diagnosis to his death, and especially in the final days of his life. It was beautiful that my best friend Sara was always there to help me, my dad, and my family. With me on one side and her on the other, she helped me help him stand up because he couldn’t stand on his own. That continues to be a beautiful image in my mind. It was beautiful that my mom and dad’s friend Elaine, a nurse, came over to help us and to teach us her tricks of the trade so that we could better care for him in the last days of his life. In fact, I see beauty in all of the nurses that took care of my dad. They were unselfish, compassionate, and kind. Looking at my dad admiring the lovely Christmas tree Mom decorated was a beautiful picture. Coming downstairs in the mornings to see my dad smiling and sitting in his comfy chair in the living room was beautiful. One morning about a week before he died, I came downstairs after my mom had helped him bathe, shave, and comb his hair and he said to me, “Karen has just turned me into a handsome prince!” He did look handsome. I found the ways people reached out to help him and my family beautiful, and I found it beautiful that somehow we made more time for each other as a family in those 14 months. I found it beautiful that my dad had such a positive attitude throughout his illness and death, and never asked, “Why me?” There is a lot of beauty in cancer, but I don’t see it in those makeup free selfies. I do see the pretty faces of my friends.
I helped organize a conference that happened last week at the U of A. As part of the conference, Niki Anderson, an honours student in Political Science spoke about the ways in which Western societies tend to beautify or “cleanse” the ugly realities of illness and death. This is what I think is going on when we post makeup free selfies in an effort to raise cancer awareness – we are erasing the ugly and uncomfortable realities from view and valorizing beauty above all else. Niki bravely spoke about her own struggle with breast cancer and the ways in which she was urged to present a pretty picture of her sickness to help the rest of us feel more comfortable. For example, Niki told us that her anti-nausea medication was not covered by health insurance. A $400 wig, however, was provided through a program called “Look Good, Feel Better”. In Niki’s words: “It’s not ‘Look Good, Feel Better’. It’s more like, ‘I look good, you feel better’”. Post a pretty selfie on facebook and you look good, so we all feel better? Emily Buchanan has written her own critique of makeup free selfies, saying, “The only awareness it raises is that of a society that’s sick and that values beauty above all else.”
In her presentation, Niki spoke about learning through discomfort. I thought a lot about whether or not to write this in the first place, and I waffled on the subject of so candidly presenting the intimate details of my dad’s very personal illness. But I think Niki is onto something – if we don’t talk about things that make us uncomfortable, like pain and suffering, we are painting a pretty picture of something very horrible, and we’re missing a big part of the picture that is the journey of life to death. Being a family doctor for thirty-odd years, my dad made the decision early on in his illness to be very open about all aspects of it and urged us as his family to do the same. He spent most of his life talking about health and illness, and he advocated talking openly about the health issues that ail us. He said we shouldn’t hide our health problems, because that’s what leads people to ignore symptoms, to shy away from seeing a doctor, or to avoid getting help. So, I chose to present this uncomfortable, but real, picture of cancer as an alternative to the very pretty pictures circulating on facebook that claim to have something to do with cancer awareness.
Cancer is not reflected in your young, beautiful, healthy, natural faces. In fact, paradoxically, the faces of cancer survivors and sufferers seem to be invisible in this discussion of cancer, centred around pictures. So I offer this selfie taken by my dad. Look at it and think of him, because he did a lot of good in the world while he was here. He saved a lot of lives – literally – and advocated for people’s physical and mental health. And he suffered from a very ugly disease in the most beautiful way possible – with dignity, patience, kindness, and gratitude for all he had while he was here.
If you’d like to donate to cancer research and treatment, please visit my Alberta Ride to Conquer Cancer fundraising page here.