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When I Was Asked to Be in a Documentary About My Son's Cancer

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Yesterday, I found myself at a cancer research lab, sitting on a chair bathed in bright light facing the camera as I talked honestly about the horrifying reality of losing my son Noah to childhood cancer. But wait, let’s stop and backtrack a moment. How did I end up here of all places?

Well, it’s quite a story.

A while back my friends at the Ewings Cancer Foundation of Canada​ (ECFC) contacted me about an exciting project they were undertaking. The ECFC is a non-profit charitable organization run by families of those affected by Ewing sarcoma who invest considerable time and effort to this cause. Forging new territory with a novel idea, they were collaborating to create a documentary about Ewing sarcoma. The goals of the film would be to educate, promote funding for research and spread awareness on many levels with respect to this disease. Filming was set to commence in January 2017 at various locations across Canada. Combining clips of leading Canadian doctors and researchers in this field with heartfelt interviews from those affected by this disease; this film was envisioned as creating a gripping and powerful view of this disease and research in Canada.

Part of the documentary was to be filmed in one of Noah’s oncologist’s lab right here in Nova Scotia, so imagine my surprise when I was asked to contribute and speak about Noah’s story! I must admit the thought of appearing on film was initially terrifying, but I immediately agreed because Noah taught me many lessons from the way he lived his life. He showed me how to face my fears because only by facing fear head on can we move forward. And he is also very clearly telling us that his story and that of the other kids/young adults involved with this film… and beyond… need to be told in order for change to occur.

In January, I was quite honestly reeling from the feelings of loss that are ingrained into my very being in facing a new year without him. Those first few weeks of January were sad and crushing. I can see why January has the dubious honor of containing what is thought to be the saddest day of the year. Blue Monday found me writing and reflecting, feeling melancholy for days gone by. As I prepared mentally for this interview, I revisited all the traumatizing memories of Noah’s diagnosis and death. It is very difficult to step back into those moments; they bring fresh waves of grief. So I must admit along with the gratitude I felt in being asked to tell Noah’s story, I had a bit of anxiety and sleeplessness leading up to my contribution to this very worthwhile project.

And now we have arrived full circle, dear readers; I am sitting in a chair opposite the film team with my heart in my throat waiting to tell Noah’s story. My thoughts drift off to the past for a brief moment as birthdays, anniversaries and holidays flash through my mind, bringing memories of days gone by. Some of them are filled with sorrow and others are filled with joy and hope for better days. I have memories of Easters spent in the hospital, birthdays uncelebrated and wedding anniversaries spent receiving the news that my child had relapsed and the prognosis was grim. But I also have other memories. That last Christmas spent miraculously at home and Noah so grateful for every gift.

Due to the aggressive nature of this disease, Noah would have needed scans for the rest of his life, not only to ensure the beast had not returned but to check his vital organs. The toxicity of the treatment can cause many life-threatening conditions later in life or even secondary cancers. The highs and lows in between barely allowed us to breathe in relief before the process was repeated. We were on a roller coaster of emotions; this is the journey of childhood cancer… up, down, backwards and so fast you can barely breathe. There was no regard to the fact that I personally do not like roller coasters.

We had a ticket to ride whether we wanted to or not.

And suddenly the nervousness disappears and there is only this – another golden opportunity for Noah’s voice to be heard. I feel at home with this great pain that is Noah’s loss. I could talk for hours about this subject. It is my passion, my life… my innocent son. The world needs to know, the pain has to stop; it is our mission today that this film be a starting point in ensuring that no more children and families be sacrificed to this beast called Ewing sarcoma.

They asked about you, Noah, who you were and what you were like. They asked about the nightmare of diagnosis and the horror of the treatments. They recognized your humanity, your soul and that you are not just a test case, a statistic in this battle. I could see the sadness in their faces, the compassion tempering their professionalism and for that I am truly grateful. Your story will be told and your voice will be heard, for change can only happen when we all start to listen and truly hear.

Here is a link to a sneak preview for this film. Will you listen to ensure our children’s voices will be heard?

Follow this journey on Noah’s Blue Ribbon Brigade.

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Thinkstock photo by eldinhoid

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Getting a Tattoo After a Mastectomy Can Be Empowering

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Did you know there are 3.1 million breast cancer survivors in the United States? Many of the survivors are left with scars due to mastectomies. Physical appearance has a huge impact on self-esteem in complex ways. We all want to believe we don’t care how people think of us,  but often that is not the reality. Many women want to feel beautiful and might work hard to be beautiful. But when you hear a breast cancer diagnosis, many of us feel concerned about our life, our families and our physical appearance.

After having a biopsy, I had a scar and thought I could live with that scar with no problem. I didn’t like having scars, but having my life was more important. Then I received the news that I had breast cancer and needed a lumpectomy. A lumpectomy takes a portion of your breast tissue out leaving your breast with less mass and more scars. The scars after a lumpectomy are more noticeable than those from a biopsy.

I looked down at myself and wasn’t happy with how I looked. Spring time was just around the corner and then summer. As petty as it might sound, all I could think of was tank tops, bikinis and how I would look like in my summer dresses. Little did I know that by then, my natural breasts wouldn’t be a part of me. I needed a mastectomy and had reconstruction completed immediately afterwards. Yes, more scars and no nipples, but I’m certainly glad to be alive and healthy today.

When I look in the mirror, I see the mark of cancer. It’s foreign and holds bad memories. More and more women are getting tattoos after having mastectomies. Why would you want to go through more pain and the hassle of a tattoo? After a mastectomy, skin tissue can be left numb, so getting a tattoo can be pain-free or less painful for some. Breast cancer may narrow our options in appearance, but in my opinion, being able to choose a tattoo and how exactly you want to look can bring the power back to the woman.

The organization called P-ink helps women find the right tattoo artist in their area to give them a tattoo over their mastectomy scar. Tattoos give the power and choice back to the women instead of cancer leaving the last devastating mark on their body. P-ink is an all volunteer organization that is available to serve breast cancer survivors to feel beautiful inside and out.

What started out as a small organization to help women, quickly turned into a movement that has helped women from all over the country. P-ink Day started in Brooklyn in 2013 with the help of crowd funding, where 10 women with mastectomy scars were able to have tattoos completed by talented tattoo artists. From there, in 2015, 45 women were able to get their tattoos.

Personally, I live with my scars, but I’m seriously starting to consider getting a mastectomy tattoo. Why should breast cancer have the last mark on my body?

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Thinkstock image by vladans

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Being on ‘Hair Watch’ After Starting Chemotherapy

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I’m at day 15. My chemotherapy began two weeks ago, thus today is “day 15” after that initial infusion. Two weeks ago, I was told that my hair could begin falling out after day 14. So today, day 15, I’m on Hair Watch.

I’ve been babying my hair. I played with my mother’s dolls when I was young, and now I’m treating my own hair as gently as I once did those dolls’ hair. I’ve been brushing it so gently and carefully. And washing it so gently and carefully.

But, it’s going to come out.

I’m getting one of the taxane drugs in my “chemo cocktail”: Taxol. These taxane drugs are really terrific at fighting breast cancer, but also good at killing off all the hair on my body. The only difficult hair loss will be of that on my head.

I know it can be hard for all women when the chemo does this to their hair. It’s odd evidence of belonging to a sort of cancer sorority. Losing my hair is difficult because, in terms of physical assets, I believe it’s my best asset. I have thick, quite nice hair. What will I look like without my best asset?

And I could have tried to save it. Some women try to retain their hair during chemo and use a cold treatment, wearing caps containing dry ice packs during treatments. It is expensive: you must rent the equipment and hire a specialist to change the dry ice packs repeatedly. But I chose not to use this process because I learned it requires sitting in place for eight hours. I can barely sit still for the two- to three-hour duration of my infusion. So, I had an option of potentially keeping my hair, and I knowingly chose not to take it. It was helpful to know the option was there.

In the meantime, I’m armed with lots of camouflage: I have scarves, ball caps, hats (some from a particularly thoughtful friend) and a wig. My best-hairdresser-on-planet-Earth took me wig-shopping last week. He thought we should get that task out of the way before I actually needed the wig. I chose the wig that was closest to my present hair color and style. If I get another wig, I may be more adventurous. We’ll see.

Today I’ve washed and am air-drying my hair. (Remember, I’m babying it!) But, when my hair is dry, I think I’m going to run some errands while my hair seems rooted to my head.

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4 Ways to Boost Morale During a Hospital Stay

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I have had Crohn’s disease for around 15 years, and in 2014 I was diagnosed with non-Hodgkin’s lymphoma. Needless to say, I have spent a fair amount of time in and out of hospitals. Being in hospitals or being bedridden becomes very boring, very quickly. Below are some things that helped me during hospital stays and can hopefully give you ideas on how to make a stressful time slightly less so.

1. Contraband Snacks

Hospital food is awful. I am not entirely sure who would create such an awful menu, but the only day I was ever excited by hospital food was Sunday, also known as bacon day. The day when two strips of bacon were added to the dry toast, creamed wheat and one boiled egg. Friends and family would always ask if there was anything I needed, and I took this up in the form of contraband snacks. Obviously, I was unwell, so I didn’t go too crazy, but fruit punch and dill pickle rice crisps were my salvation. Every once in a while, I would also ask for fresh fruit, making sure it was well-washed beforehand. It got to the point where I would dream about roasted veggies or any food that wasn’t mushy or brown.

2. Netflix and Chill (the slightly less fun version)

When I got sick in 2014, my friends chipped in and bought me an iPad (other electronic devices are also available). If you don’t own one, try and borrow from a friend or family member if possible. I had an awful attention span, but found that short episodes of “The Fresh Prince of Bel-Air” were exactly what my drugged-up brain could handle. I also got slightly addicted to YouTube. Shout out to danisnotonfire and AmazingPhil for keeping me entertained and being way more awkward human beings than me. It made me feel a bit more connected when I was overwhelmed or stressing out over things out of my control. Even now, if I am having an off day, I will throw on one of these videos to calm me down, and remind myself of how far I’ve come in the last two years.

3. Hospital Bingo

This one was inspired by a friend who had read “Super Better” by Jane McGonigal, which espouses the method of turning daily tasks into achievements. Create a little challenge sheet for yourself, and try and accomplish as many tasks as possible. It can be hard to motivate yourself to continue with self-care when you are in the hospital, and I would use this method to trick my competitive side into taking over. A few examples of ones I would use are: do five laps of the ward, visit the cafeteria, call/Skype someone for a chat (this would force me to reach out, even on bad days), etc. Try and give yourself a few easy victories and at least one challenging task.

4. Find Some Creative Output

For me, it was writing in a journal. I would switch between personal entries, embarrassingly angsty poems and silly stories. I have also tried coloring books, Sudoku, puzzles, crosswords, etc. Just find something that is a positive distraction with low physical stress. If none of those work for you, audiobooks can also be a great low effort option for days when you just need rest. I found it helpful to engage my mind and focus on something more than just being sick.

Hospital stays and days in bed are an inevitable part of most illnesses/conditions. It can be easy to fall into a rut and bad headspace when you are ill and unable to participate fully in life. From personal experience, I have found that keeping myself engaged and challenged, no matter how small the task, has helped my recovery and helped me to stay connected when it feels like I am alone in my illness. Who knows – if I have to stay in the hospital again I may just release my book of angst-filled poetry. Or not.

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Thinkstock photo via shironosov.

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Fighting the Dark Thoughts I Have as a Cancer Patient

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Looking at me, I look like a regular mom. If you passed me on the street with my short, curly hair, you wouldn’t be surprised to know I am (now) a stay-at-home mom with a husband and three young kids. I have a “mom haircut” (mostly grown back to its pre-chemo length) and, most days I’m sure, dark(ish) circles under my eyes that would lead a passerby to assume they knew my story.

But they probably wouldn’t realize that two years ago I was diagnosed with an incurable type of cancer called multiple myeloma. Never heard of it? Neither had I. But two words I never before knew existed have changed my life. They hang over my head and there is literally not a single day that goes by that they don’t affect me in some way.

On the surface I keep it together. Each day I go through the usual, chaotic routine of getting my husband and our three young children out the door. Breakfasts get made, lunches packed, backpacks checked. But as the door closes behind them and the last bus pulls away, I am left with an empty house and thoughts can start to take over.

When I first was diagnosed, I thought about having cancer. All. The. Time. When a doctor walks into your room seven days after you went into the hospital with an eye infection, says you have cancer and it’s “incurable but treatable,” that’s a phrase that’s hard to shake. He told me that years ago this would have been a death sentence, but now myeloma patients live 10 to 15 years or more after their diagnosis. I know his intention was to comfort me, but now it’s hard not to feel like I have a big countdown clock over my head. Ten to 15 years may sound like a gift, having been diagnosed with a terminal illness, but to the then 42-year-old me, it sounded like the death sentence I’m confident the doctor was trying to assure me it wasn’t.

When this happens you begin to think about the future a lot. During the most random moments your mind can wander and you begin to imagine what life would be like if you weren’t around for it. I don’t say this to be negative… it’s just the new reality for many cancer patients or anyone who receives news like this. When you see me and think I’m just an average mom, what you don’t see is what’s often lurking beneath the surface. That my brain is constantly racing. That each day with my husband and kids feels like another deposit into the memory bank for our family.

You don’t know that when I would pass pictures in our house I wondered if that particular photo will be used when they pull together a picture board to remember me one day. You don’t know that when I set up passwords now I always use my husband’s usual password so he won’t have to guess what it is if I’m not here to tell it to him. You don’t know that whenever I would pass an old, adorable couple I’d wonder if my husband and I will get to be that couple. Will I get to meet my grandchildren? You don’t know that every time I read an article about another celebrity dying of cancer, I rapidly scan the article to see if they had what I have.

You don’t know that I am constantly adding those 10 to 15 years to my kids’ ages and wondering what age that will make them if I’m gone. You don’t know that there isn’t a single day that goes by when I don’t worry that my time will be cut short and I won’t see major milestones in their lives. Proms, graduations, weddings. But even more importantly, everyday things too. As exhausting as bedtime can be with three young kids, I still worry about how many of these snuggles I have ahead of me.

The good news is I am in remission, which has allowed me to push these dark thoughts further and further into the recesses of my brain. I am lucky to be responding well to treatment, but myeloma, like all cancers, is a tricky disease and life in general is unpredictable.

I am optimistic that I will be here for a long, long time. I have made life-changing decisions recently that put me and my health first. Science is on my side with cancer innovations coming fast and furiously. That said, I just wish I could shut my brain down. Wave some magic wand that takes all the bad thoughts away. The good news is this has gotten better over time. Each day I am further away from my initial diagnosis, I think about these things less and less. I don’t feel like I am always waiting for the other shoe to drop.

Most of the time I try to turn my thoughts into a positive. I try to take that “you only live once” attitude and challenge or allow myself to do things I might not have otherwise done. But some days my mind still goes to dark places. If you have a friend or family member with cancer – or any illness for that matter – who seems distracted or preoccupied, give them the benefit of the doubt. You never know what’s on their mind. Generally speaking, I have tried to have a positive outlook since that fateful day. But every once in a while dark thoughts creep in. I work hard to sweep them away, sometimes more quickly and more successfully than others. During those times I grab a kid for a big snuggle and shake the doom and gloom thinking from my head. And it usually works.

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Thinkstock photo via lekcej.

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