gold infinity sign made up of stars in the night sky

The Tattoo I Got Before Beginning Treatment for Adrenal Cancer

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Adrenal cancer is one of those orphan cancers that takes you by surprise when it returns, and even still when it doesn’t. I found out a few weeks ago that my disease had returned again, and needless to say, I am slightly bummed. I start an immunotherapy drug on Wednesday, and the hope is that it will curb it for longer than just the two months it has been staying away. The dream, however, is that it will be a cure! My thoughts, as they do in many moments throughout the day, flew to my brother G when I heard the news and I wished, not for the first time, that he were sitting with me in that cold clinic room.

Before my baby brother died, he described to me in detail the type of tattoo I should get for him. I was sitting next to him in the big blue comfy chair while he was in his hospital bed, lucid and at peace. Our conversation went something like this:

Me: “G, what symbol should I put on my wrist for you?”

G (without any hesitation but with a slight smile): “An infinity sign.”

Me: “Why is that?”

G (smiling even bigger): “Because I am always thinking the same thing.”

Me: “Yeah? Like what?”

G: “Like, ‘what the hell is going on??’”

Me: “What else do you think about?”

G remained silent for a moment, and turned his head towards the window. After a few seconds, he said, “…but you should put stars inside of each side.” He smiled really big after this and looked me in the eye.

Me: “Why is that?”

G: “Because they are infinite. They never die.”

I promised him I would do as he asked. The conversation ended after that as his attention turned elsewhere (to the cows that lived in the field across from our apartment), and I got choked up because of his answer. He was lucid for that moment, as he was for so many others, and I am so thankful for that moment and those wishes.

I got my tattoo today, with some modifications (I am sorry, G! But I know that you forgive me!), just in time to start treatment next week. It is an experimental immunotherapy, given via infusion over 30 minutes once every three weeks, and should not change my life in too many ways (except to hopefully give me a cure, knock on wood!)

I suppose that I am at a junction in my life. Completely in love with a girl who makes my heart smile, in the middle of graduate school and finally healthy enough to ski and adventure and play violin for several hours during some days and drive like hell to get through a blizzard to work the next morning.

However, there is also the other hidden part. Adrenal cancer is a type of cancer that is not visible to a person walking down the street giving me elevator eyes. I still have my hair, don’t use a wheelchair and am not bedbound, and am still eating (ish). The only way it is possible to tell is if you know me well and can notice the days when the color has fallen from my face because of pain, you have seen the shape of my body change from when they removed organ after organ over the past few years and from many surgeries (and yes, I am a full supporter of just installing a clothing-grade zipper in my abdomen so as to make it easier on both the surgeon and patient) and you can tell I am acting differently when my endocrine system starts to crash and I begin to slur or become incredibly confused.

I think the purpose of this post is two-fold: to point out that not everything is visible to the eye, and I am thankful for that. However, as I embark upon this next step in treatment, continue along this process of school to someday help people in the same ways that my family has been helped over the past 14 years and continue to try and open my heart to the world around me, I will have this little token tattoo to remind me that life is fleeting and worth every moment.

No matter the issue, whether you deem it small or large, regarding health or sanity, even love or loss, life is worth living. Baby G taught me to live every day to its fullest, even if that means napping for most of it, because that will make the following day even better. And maybe, just maybe, I can stop judging myself for what I can’t do, and start thanking my body for the things I can do.

I look at the stars a lot more than I used to. Maybe in a few years I will invest in a telescope. After all, although stars change just like everything else, some part of them are always there, watching out for us from above.

Immunotherapy – with your help, I can beat this. In another 50 years, I will still have my tattoo, and hopefully, I will still be skiing.

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Thinkstock photo via chaluk.

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How Play Can Help a Child Cope With Stress at the Hospital

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As a child life specialist, I’ve seen countless examples of play transforming a child’s mood in the hospital environment.

I remember the day when one particular little boy lay curled in a ball beneath the covers in his hospital bed, his bald head hiding beneath the sheets. He had not showed up in the playroom that afternoon, which was unusual. This was a kids who waited eagerly each day for the playroom door to open and was often the last one to skate his IV pole back to his room when we closed. I had yet to see him without a smile. He seemed to me like a content child with a quiet maturity that went well beyond his seven years. He took his medical treatment in stride and enjoyed the company of his brother and sisters, as well as just about every activity the playroom had to offer.

But not this day. It was mid-afternoon and we had yet to see him. His mother stopped by and informed me he had a complication which would require surgery.

The little boy was very upset and refused to leave his bed or talk to anyone. The removal of the catheter that allows patients to receive chemotherapy without an IV is difficult for any child, but it was important to find out what was upsetting him in particular. Understanding the details of what was causing this typically cheerful boy to retreat under the covers would give me a clue about what would help him cope.

With a soft knock, I entered his room and took a seat by his bed. His father sat vigil in a chair close by. I gently coaxed the boy to tell me what was wrong. He was having none of it.

“We were wondering why you weren’t in the playroom today. Your mom told me you have an infection.”

Silence.

“It can be pretty disappointing to have to go in for more surgery.”

Not even a nod.

“I am thinking you might be too upset to even talk about it. So I was wondering if you could draw a picture about the most awful part of what is happening. That way, I can understand a bit better what you are going through.”

I placed a piece of plain, white paper on the bed, along with some markers.

It took a few moments, but he uncurled from the fetal position and scooted up to a half-sitting position. He reached for a marker. I breathed an inward sigh of relief and sat back to see what he would draw. Placing his hand palm down in the center of the paper, he outlined it with a green marker. He still wasn’t talking, but he was communicating something important. He held out the drawing, and I took it from him.

“I see a hand outlined in green,” I said.

I had no clue what it meant. His father was the one who piped in with an explanation.

“He’s mad because without the Broviak, he will have to have an IV in his hand. It hurts and it’s harder to play with an IV there.”

“Oh, I get it,” I said. “Yeah, having to get an IV is no fun. And having more surgery stinks, too.”

I paused to see if I was on the right track. He wasn’t speaking, but he was making eye contact.

“I do have an idea though. How would you like to make a big mess that you don’t have to clean up?”

A tiny smile appeared on his face.

“Okay, then. I’m going to set something up and let’s see what a big mess you can make.”

Stepping out into the hall, I headed for the utility room on the unit. On the way, I snagged his nurse.

“We’re going to make a bit of a mess, but I promise I will clean it up,” I assured her.

She had no complaints. I gathered supplies for what I had in mind: one bedpan, a roll of toilet paper, a large piece of chart paper, tape, and an armload of towels and sheets. Reentering the little boy’s room room, I stopped at the sink to fill the bedpan with warm water, placing the filled bedpan on his rolling bedside table. The sheets and towels went on the floor against the wall opposite the foot of his bed. His eyes followed my every movement, showing curiosity and anticipation

So, here’s the deal.” I said. “Lots of kids have stuff happen in the hospital that they find upsetting or scary. Sometimes it helps to get these feelings out in a physical way. I am setting up a target game, where you will get to throw wet toilet paper at what is upsetting you until it is completely destroyed. The question for you now is, do you want to destroy the drawing of your hand, or is there some other thing you could draw that you’d like to obliterate?”

He picked up a marker, so I brought over the big piece of chart paper. He got right down to work, drawing a huge needle that took up the entire sheet of paper.

“Oh,” I said. “That looks like the needle that might have to go in your hand.”

He nodded. When he finished, I took it from him and taped it on the wall opposite his bed.

“Now for the demonstration,” I said, reaching for the roll of toilet paper. “See, you take as much as you can to make a nice, big wad.”

I unrolled it from the tube, wrapping it around my hand.

“Now, here’s the most important part. You dip it in the water, but you don’t squeeze any of the water out, so it’s sopping wet.”

He was riveted.

“Throw it as hard as you can at the target, yelling what makes you mad or scared.”

Winding up my arm like a star pitcher, I let go of the wad.

“I hate needles!” I yelled.

As my voice filled the small room, the toilet paper thwacked solidly against the drawing of the needle, sticking there a moment before falling to the floor. I turned to him.

He sat straight up and reached for the toilet paper roll. He followed my actions, and as he whipped his TP bullet at the target, his voice rose to a throaty yell.

“I hate IV’s!”

I applauded him and he took it from there, yelling out the things that had been bottled up inside, until the chart paper sank to the floor in defeat. For the last few tosses, he rose to his knees in the bed and used his whole body to fling the wet mound at the target. It took a while to clean up the stray clumps of sticky toilet paper and mop the floor with towels, but I didn’t care one bit. He was now talking animatedly with his dad, and he ended up in the playroom not long after.

I learned about this technique at a play therapy training seminar from Heidi Kaduson. She writes about the activity in her book, “101 Favorite Play Therapy Techniques Volume III.” Many techniques from other disciplines are readily adaptable to the hospital environment, and this one in particular has brought relief and laughter to many children and teens facing extended hospitalization, isolation and painful procedures. I’ve also used it in a parent respite group with great success. If the child is unable to draw or write, they can always dictate to you and have you act as the scribe. I’ve learned that Kleenex and paper towels don’t work as well as toilet paper. They don’t make that wonderful, “thwack!” or provide enough proprioceptive feedback to the child. I’ve seen specialists experiment with food coloring with great success, but of course it is a bit messier. Taking before and after photos for the child, preferably on the family cell phone if there is one, can be especially validating. Either way, the process of getting a child’s fears or anger onto a piece of paper and role modeling how to obliterate it, is a win-win for all.

Bull’s-eye!

A version of this post originally appeared on PediaPlay: Connecting, Coping & Healing Through Play.

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 Thinkstock image by Keith Brofsky

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Why I'm Choosing to Talk Openly About My Skin Cancer

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I am what you would call “lackadaisical” about using suntan lotion and sunblock. Back in my teenage years, I thought using baby oil would give me that coveted glossy “sheen.” I would be that gal on the beach who would be there for hours with no umbrella. More than once, I burned my skin so bad, it hurt to sit down. Did I ever think I would get skin cancer? Nope. Did I think I was invincible? Yep.

Well, flash forward to the summer of 2016. I was at an appointment with my doctor, and I showed her a mole on the back of my left calf. She told me at the time it was nothing to worry about; the mole was OK, and she didn’t suspect skin cancer. Towards the holidays, I began to notice the mole getting larger and changing colors. I was super busy and figured I would ask my doctor to take a look at the mole at my physical in January 2017. Well, once she took a look, she was like, “Catherine, how long has that mole looked like that?” I said, “Oh, a few months.” She immediately did a “punch” biopsy and said I would get the results in about a week.

I knew when she called me personally, the news was probably not good. It wasn’t. She told me I had malignant melanoma and would need to go to the Melanoma Clinic at the University of Michigan in Ann Arbor to confirm the diagnosis. I got an appointment a week later, and it was confirmed that I have stage 1B malignant melanoma skin cancer. Even as I was sitting in a hospital gown, I still was hoping it was a mistake and I didn’t really have skin cancer.

During that appointment, I talked to two doctors, and they said, “Can you come back tomorrow? We will remove the mole.” My husband was able to rearrange his schedule to be able to take care of our son Dominic, and since I was getting a “local,” I drove myself there and back. I figured since they removed the mole, and it had only looked strange for a few months, that would be the end of it. I had to wait five business days before I got the results. The doctor who removed the mole called me and told me the cancer was deeper than they originally thought and I would need to see a surgeon to schedule my surgery. Excuse me?

When I went to see the surgeon on Valentine’s Day, she said, “We shouldn’t need to do a skin graft.” What?! I already have a one-inch scar from where they removed the mole. My surgery is scheduled for March 23, and I will be getting a “wide-local excision of left calf melanoma with intra-operative lymphatic mapping and sentinel lymph node biopsy.” Quite a mouthful, huh?

There is a 15 percent chance the cancer has spread. I am hoping by being so open about my experiences, if just one person goes to their doctor when they notice a change in a mole, instead of waiting like I did, hopefully it will spare them having to go through what I am going through now and what my friends and family are going through. Consider it a public service announcement. For more information, visit the American Cancer Society’s website.

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Thinkstock image by monkeybusinessimages

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When People Say I'm 'Too Young to Have Had Cancer'

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I don’t seem to fit a lot of people’s ideas about cancer. I’m neither a child nor properly an adult yet, I still have all my hair and I didn’t have to have chemo or radiation. My cancer journey started and ended with surgery, mainly because I was diagnosed with an incredibly rare and resistant-to-treatment cancer. Outside of that diagnosis, I’m still 22, and that surprises people.

We’re not told much about young people with cancer. The incidence of cancer in children is one in 285, according to the American Cancer Society. Most cases of most cancers are in people who are older; their cells may have had longer to age and mutate. Mine just happened to do so at 22 instead.

I’ve been told that the statistical likelihood of me getting the type of cancer I had, at the age I had, is so astronomically small as to be almost statistically impossible. No amount of overly cautious scanning or awareness could have prepared either me or my doctors for what would appear. To give some idea of how rare my cancer is, the largest study — itself a meta-study including all previous studies — had about 500 cases in it. Not 500 in a year, or a decade; 500 total. A bunch of the studies were just about one person.

Now six months out from my diagnosis I’ve been told numerous times by numerous people that I’m “too young to have had cancer.” It might seem like a good comment to make, but to me, most people are “too young” to have cancer. Maybe if you’ve lived a hundred years and done everything you want to do, but cancer doesn’t differentiate based on time or experience. In my opinion, hidden behind a comment of me being “too young” is a possible assumption that it “should” have happened to someone older.

I will never be glad I had cancer; it’s one of the most difficult and horrifying things that has ever happened to me and will continue to haunt me for the rest of my life. But even though soft tissue sarcomas like my own cancer have an overall survival rate of 45 percent, I’ve learned there’s a better chance — statistically — of overcoming it is as a young adult.

So to the people who said I’m “too young to have had cancer”: there is no age threshold beyond which it is acceptable to have cancer. My young age does not mean my cancer is not as impactful or difficult as that of someone who is older.

To the next person who offers a comment about my age: I know you don’t mean to, but what you say can invalidate my experience. A better thing to do for me would be to sympathize, to express empathy even though what I am experiencing is so entirely foreign. I’m well aware that what I’ve gone through is beyond unusual, but despite that, I still crave normal, empathic human interaction. Please ask how I am, how my scans went, how university is going, even how my dog is; it makes me feel a bit more human in the midst of an inhumane experience.

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Thinkstock image by AntonioGuillem

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How My Dog Helped Me Cope With My Cancer Diagnosis

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Even though I’ve been a certified Canadian fitness professional since 1992 — and have practiced and taught many forms of exercise — I’ve only been running seriously since 2010. In 2011, I moved to Raleigh, North Carolina, where running outside year-round is possible. Snowfall is rare and doesn’t last long if it falls, and temperatures rarely get frigid enough to put a stop to a run. While living there for three years, I was in the best shape of my life and regularly competed in races where I was usually in the top three finishers for my age group. I also started running almost every day with my Irish Setter, Seamus O’Malley. He was, and still is, a great running companion, often urging me up hills when I might have passed on them.

In March of 2014 we moved back to Canada. It was a very difficult time for me. My mum had kidney problems along with heart issues. The doctors informed her there was nothing more that could be done and told her to settle her affairs. My mum was dying and my stepdad was having trouble coping. However, if I thought I was overwhelmed at that point, I was in for a magnificent slap in the face.

My mother died at 1:20 a.m. on Wednesday April 22, 2015. This was quickly followed by my stepdad’s stroke two weeks later, with a subsequent extended hospital stay and weeks of rehab, both of which resulted in months of worrying about him being on his own.

Just as things were starting to get back to normal, I was diagnosed with colon cancer on September 17. Boom! My world exploded in the six seconds it took my GI to tell me what she had found. There were a few things that saved me from utter depression and wanting to completely shut down. One of those things was Seamus O’Malley, my Four Leaf Rover. Thank God for him. On the days I felt the walls closing in and all I wanted to do was stay in my house and cry, there was Seamus reminding me it wasn’t always about me.

beautiful brown dog laying down in a living room.

I remember one particularly low point. It was about 10 a.m. and I was lying in bed after telling my husband before he left for work, at 7 a.m., that I’d get up right after he left. That turned out to be a rather large whopping falsehood. It was just easier to lie to him than argue. Anyway, all of a sudden the bed shook as Seamus jumped up and headed straight for my head, where he started to lick my face relentlessly. At first I was mad, which I’m ashamed to say, and I pushed him away. He is not allowed on the bed, and how dare he interrupt my melancholy? However, one look at his face as I yelled at him made me shut up. He was crestfallen. I could see clearly he was crushed. I felt horrible, which was quite a feat, considering I was already feeling at least 50 shades of horribleness.

I had a brief moment of clarity. I say brief because it would be disingenuous of me to say this moment completely cured me of any further caterwauling. For that particular moment in time, though, it did. I got myself up, washed my face, and pulled on some running gear. I watched Seamus dance around, clearly and completely excited about the prospect of being with me on a run, and I realized I was his complete world and I did not have the right to ignore him or to check out completely. On that morning, my Irish Laddie saved me from myself. We had a glorious run, with plenty of poop stops, as I recall. I felt normal and grateful to my four-legged boy. On that day, I was able to cope.

I’d love to tell you that all the following days leading up to my cancer surgery (and the eventual fabulous news that there was no lymph node involvement and no distant disease present) were filled with my fighting spirit, but that would be an invention. What I can say, however, is that every single time I allowed my Seamus to remind me there was a world out there he wanted to go and sniff, I felt better for it. I clung to those moments when they happened. I felt strong, purposeful and powerful and able to conquer this cancer.

For those of you without a dog, I imagine this might be hard for you to understand. For those of you who have chosen to have a dog in your life, I can imagine you nodding your heads in complete understanding. There are so many things I have learned from my dogs. When my first Irish was in agonizing pain from bone cancer, I never once observed her to snarl or snap at anyone. I can’t say the same for myself.

There were many people who were there for me in my hour of need. I do not want to minimize their impact. I will never be able to properly thank those friends and family who embraced me with love and understanding, but it was only Seamus O’Malley that never had that pitying look in his eye when he gazed at me. It was only Seamus O’Malley that basically told me with his manner, “Well, Mum — f*ck cancer — I just want to run with you and feel the wind and the sunshine on my face. The only way I can do that is with you, Mumma. I love you Mum, so come run with me and see and feel the world in all its glory. Come and feel better with me, run with me and feel capable”. So I did. Seamus O’Malley — my Four Leaf Rover.

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These Innovative Shirts Make It Easier for Kids to Get Life Saving Care

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Loving Tabs Healing Shirts are designed for making it easier for children with cancer to receive chemotherapy treatment while keeping their modesty and dignity.

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