Some Better Ideas Than #NoHairSelfie for #WorldCancerDay

Smith and Sam

 

Oh sure, it looked romantic and amazingly supportive when Samantha’s hunky boyfriend Smith Jerrod did it on Sex and the City, but shaving your head, or worse – simply plugging a photo of your mug into the #NoHairSelfie app that photo-shops a bald version of you – isn’t really showing support for cancer patients, in my opinion. Unless your spouse or dear friend or child has expressed consent in such a personal statement, you are running the risk of offending cancer patients and survivors, like this courageous woman who just recently lost her hair. I’m not speaking for all cancer patients and I do see some of the merits in actually shaving your head for a spouse, child or close friend, to make them feel less unique in their appearance or to encourage people to donate money. I just find a mass movement of strangers trying on baldness with an electronic app really minimizes the painful layers of what losing your hair via chemotherapy feels like, both physically and emotionally.  It has rankled me from the first moment I heard of it. Why do I feel I’m entitled to even have an opinion on this movement and its impact on cancer patients and survivors?

Because I am one.

At the age of four, I had emergency surgery after a fall from a swing left me with overwhelming pain. The doctors assumed I had ruptured my spleen, but instead found a kidney busted open with a previously-undiagnosed cancerous tumour that had burst on impact after my fall. My kidney was destroyed and needed removal, and in the words of the doctor who finally told my parents why they had been waiting for hours – I was a very sick little girl. Subsequent radiation treatments and chemotherapy followed, to ensure stray cancer cells that were released when the tumour burst didn’t quietly take up residence elsewhere in my body. I don’t remember much about the radiation part (except the legacy of infertility it left me) but I have vivid memories of the chemotherapy; of how the drug would wind through the IV tube and as soon as it entered my body, I would begin vomiting and wouldn’t stop for most of the day. Chemotherapy isn’t just poison for the cancer, after all.

Fresh Outta Nephrectomy Surgery

Fresh Outta Nephrectomy Surgery

One of my most painful set of memories of this time revolve around the loss of my hair. In today’s medical advancements, some cancer patients are lucky enough to avoid complete hair loss, but back then, hardly anyone escaped it; even four year old little girls. My mom woke me one morning and found almost my entire head of hair over my pillowcase. It had happened overnight while I slept and I still recall her trying so valiantly to be brave for my benefit, yet failing and crying in front of me. Now that I have a young daughter of my own, I cannot fathom how my mom got through all of the treatments and crying (mine and hers) and needles and vomit and worry. She deserves a medal, for sure. Also at that time (1975) wigs were not much of widespread  fashion statement and were in scarce supply. My parents had me fitted for an old-lady wig that resembled the hairstyle Maude sported, minus the style. Suffice to say, wearing a wig at that age was no easy task and led to other painful situations of kids teasing me and even threatening to take my wig from my head.

Yeah, I WISH they had taken this wig. And burned it.

Yeah, I WISH they had taken this wig. And burned it.

Eventually my hair grew back and life went on, but those childhood experiences changed me in innumerable ways. I still have very strong reactions to seeing children who are wearing scarves around their heads, and I can’t watch any movies or TV programs where children are terminally ill. So when I saw the campaign for #NoHairSelfie and some people on social media proudly posting photos of themselves smiling with their hair electronically removed by an app, or urging their readers and social media followers to “celebrate” World Cancer Day, my reaction was visceral; I cried, I raged inwardly, shouting at them that losing your hair is no reason to grin proudly, and cancer is definitely not anything to “celebrate”.

I get the intentions, I really do. I just don’t think much thought or sensitivity was put into this campaign with respect to how it might make some cancer patients and survivors feel. My overwhelming gut response is a desire to scream at the images of healthy people pretending to be bald “YOU HAVE NO IDEA WHAT IT’S LIKE.” And they don’t. An app can’t begin to give you the experience of feeling completely abnormal and a freak of nature when all of your hair suddenly leaves your body. It doesn’t provide the fun of having constant insecurities that everybody knows you’re wearing a wig or that your wig has shifted unnaturally or that it looks fake or doesn’t suit you. All those smiling faces being uploaded into the app? They look healthy and happy. People who have lost their hair to cancer are not healthy and rarely look so. Some may be fighting their damndest to hang on to some of life’s happiness, but rest assured they aren’t happy about losing their hair or having cancer.

Even people who are “brave” enough to actually shave their real heads still aren’t experiencing the full range of physical and emotional traumas that chemotherapy often reduces its victims to. I have far more respect for those who patiently grow out their hair and cut it off to donate for wigs for cancer patients and I am baffled that a prestigious establishment with powerful public engagement such as The Princess Margaret Hospital* wouldn’t see this as a much better campaign to invest their marketing efforts with. Wigs are expensive and real hair for them is not easy to come by, even if you want to donate your own. Hair has to be a specific length and cannot have dyes or chemical treatments in it.

Hair, Returning

Hair, Returning

While I understand the #NoHairSelfie has attracted some worthy attention and awareness for cancer patients with hair loss, I still feel that if you really want to help cancer patients, donate your money, time or supportive kindness. Volunteer, fundraise, or simply make some freezable meals for the cancer patient you know in your life. These are meaningful, helpful actions that have direct impact on those struggling with cancer or survivors who live in fear of relapse, unlike posting a picture of yourself and counting your “likes” using a hashtag originally meant for REAL cancer patients to reach out and support one another. Think about your actions, not just about jumping on the bandwagon because it sounds fun and all your social media friends are doing it.

It’s Word Cancer Day. My thoughts and prayers go out to all the brave fighters currently battling for their life and health, for all the survivors who have won, and for all those who tragically could not overcome this terrible disease.

 

*Please be assured that while I don’t agree with the campaign of baldness, I absolutely support The Princess Margaret Hospital in their efforts to support cancer patients. I was once a patient at the old hospital and have visited the new one, and I know the world-class establishment is full of hard-working and dedicated health professionals who strive to give the best physical and emotional care to every patient they treat.

 

40 Thoughts on Celebrating 40 Years Without Cancer

Today, I celebrate my fortieth birthday.

Well, “re-birth day” is probably a more accurate description.

On June 10, 1975, I fell from a swing in my backyard. I was four years old.

The impact when I hit the ground caused an undiagnosed cancerous tumour growing in my left kidney to burst. I still remember the pain and having to run into my house doubled over from it, trying not to cry out because I didn’t want to disturb my sunbathing neighbour who had fallen asleep on her lounge chair.

The E/R doctors told my parents I had probably ruptured my spleen from the fall.

Boy, were they wrong.

When they operated on me, they found a kidney destroyed by cancer cells, and had to remove it immediately. I had been bleeding internally so much that I needed 24 bags of other people’s blood to replace what I had lost. (Thank-you, blood donors.)

“You have a very sick little girl. She will be lucky if she makes it,” was the first thing the doctor told my parents after they had waited three hours wondering why a ruptured spleen was taking so long to fix.

I guess I was lucky, because I did make it. I thrived. I’ve lived a full life which in my mind, is hopefully not even close to being over yet. I’ve got WAY too much living left to do still. I look at this date in my history as my second chance at life. Oh sure, I was too young then to appreciate it. I was too bitter and resentful wondering “Why me?” when I had to undergo the subsequent radiation treatments and chemotherapy to ensure the elimination of any cancer cells that strayed when the tumour erupted. I didn’t understand why I had to endure more pain and another surgery a few months later when scar tissue adhesions caused a bowel obstruction. I didn’t understand why all my hair fell out on my pillow overnight, or why the kids at school teased me for wearing a wig and tried to play keep-away with it one day. I’ve hated losing my fertility and healthy immune system all these years later, and often have felt so resentful for all of the permanent effects of that one day.

I’m not sure I understand it all even now, but I’ve come to accept that the “whys” of life sometimes have no answers and often don’t matter. The events of June 10, 1975 had a profound effect on my body and my character and it has shaped me in more ways than I probably even recognize.

cancer

I’ve learned a few things along this crazy forty-year roller coaster.

At the risk of sounding like I’m auditioning for the role of meme-creator, here are some of the more significant ones:

  1. Life is an amazing journey – sometimes it’s amazingly awesome, and other times it’s amazingly shitty, but those shitty times help me to truly appreciate the rest of it.
  2. I don’t have to be a superstar to matter. I used to worry that because I have survived so many trying times in life, I should really be doing something “spectacular” with myself. It’s only recently that I realized I am doing just that – I’m a great mother and stepmom, a good wife, a decent writer, a supportive friend and I love being all of those things. That. Is. Spectacular. Enough.
  3. My body is not something I need to use to impress anyone. I am still working hard to accept the parts of my body that I don’t love, but I’m much better at that acceptance now than I was twenty years ago. Anyone who has a problem with my body can kindly note the sprig of mistletoe hanging over the bootylicious junk in my trunk.
  4. Dying is not the worst thing that can happen to me. I’ve already lived through some stuff that I think might be worse than dying. I don’t want to die, but there is nothing I can do to stop it when the time comes, and I have no control over when that time may be, so worrying about it seems like a gigantic waste of time.
  5. Marriage is hard work. Motherhood is hard work. Friendship is hard work. Life in general is hard work, but DAMN, aren’t the rewards pretty fucking incredible?
  6. When somebody upsets or hurts me, telling them my feelings using “I feel…” statements is my best option to having my feelings actually heard and considered without the other person feeling defensive.
  7. Eating healthy and exercising are important. I suck at both of these, but I’d rather die ten years earlier with my mouth smilingly full of chips and cookies than eat kale and run marathons while wishing I was sitting with a plate of pasta in front of me. I don’t want to rush death because I have so much to stick around for, but balance is really about enjoying what I enjoy without guilt and respecting those I would leave behind if I wasn’t here.
  8. It’s ok to be selfish sometimes. Loving myself and making my own wants or needs a priority isn’t really that selfish. As I get older, the things I think I “have” to do or “should” do are becoming less and less, and that’s ok.
  9. I have what some would call “regrets” but I don’t dwell on them because I’ve yet to encounter a hot tub time machine.
  10. I don’t think forgiving someone means you have to allow them to continue doing whatever you are forgiving them for. Sometimes forgiveness means cutting people out of your life so that your hurt can heal and you can forgive and forget – about them.
  11. There is absolutely NO better sound on this earth than the belly laugh of my daughter. Nothing.
  12. Opinions are not attacks on character. Everyone has them. Sometimes they will be the same as mine, sometimes they won’t, but ones that are different than mine are learning opportunities.
  13. TV is overrated. Reading is underrated.
  14. If my kids get straight A’s, win awards, scholarships, sports trophies, etc. but are total assholes, I have failed at my work. I refuse to fail at that work.
  15. Sometimes natural consequences have a much bigger impact than me shouting or grounding or giving a speech.
  16. I live for the moments when my daughter’s arms curl around my neck and she kisses me and tells me she loves me without me having to chase her or beg her for it.
  17. Some people don’t like me. Sometimes that bothers me. Sometimes I truly don’t give a rat’s ass. Either way, *I* like me and that’s what matters most.
  18. I’ve screwed up some of this parenting business, and I will screw up some more, but I’m still a damned good mother and my kids will be just fine.
  19. Every day has good moments, even if it’s a really bad day.
  20. Every day gives me something, even if it’s just ONE thing, to be grateful for.
  21. I’ve learned to accept that perfection is knowing that something can still be mind-blowing and be imperfect simultaneously. Good enough is still good.
  22. I have been many things in my life and many people have different opinions of me, but I’m not boring. Gossip will never go away, and “You’re welcome!” to those I’ve given something to talk about.
  23. Change is the only way to keep moving forward in life and learning. There is always room for improvement, but not at the cost of dissatisfaction with yourself.
  24. No matter how bad things are, they could always be worse.
  25. My mom was right – I do understand now that I’M a mom.
  26. Nothing feels quite like someone you love caressing the side of your cheek with the palm of his or her hand.
  27. “Don’t sweat the small stuff” isn’t just the title of a book – it’s a recipe for life sanity. I’m not always good at this, but as I get older, I’m realizing how integral this advice is to my mental and physical health.
  28. If you don’t see my worth, that’s YOUR problem, not mine. I have given up trying to prove myself to anyone.
  29. There are all different levels of friendships, and that’s ok. Some friends are for life, some are not. Some have your back when life is kicking your ass, some don’t know what to do or say. I am trying my best to appreciate what each type of friend gives me and give back to them what I can.
  30. Sex is important. It’s not just to pump my ego, like I thought it was 25 years ago. It’s a physical release, but also an emotional connection.
  31. Actions do speak louder than words. I’m learning to listen better.
  32. People rarely change simply because *I* want them to. Change is truly self-motivated, but if you market it properly, some people are much more open to motivating themselves.
  33. Cancer sucks. I lived many years fearing that I would get it again, but now I just worry that all that negative energy will make me sick, so I try to not think about it.
  34. Laughing together with people I care about is my favorite soul food.
  35. I don’t have to stop loving someone simply because I don’t like some of their actions.
  36. Hate is not only a strong word, but a heavy burden to carry. Anger passes, but hate takes up too much time and energy and is rarely worth it.
  37. Animals are an integral part of my family and always will be.
  38. Love is love. There are no different kinds reserved for the “best” skin colour, sexual orientation, religion or gender. All humans are equal in every way. I am sad that this is not yet a universal truth, but I refuse to give up hope that one day it will be.
  39. Family isn’t only about genetics. I love mine. My parents are incredible people who always have my back, no matter what.
  40. Cancer fighters and survivors are amazing people. I was a kid and had no idea what I was dealing with, which makes it so much easier than what those who are fully aware of their situation must deal with. I survived through pure luck, but so many others survive by fighting with everything they’ve got. I bow down to them.