Month: March 2015

Guest Post: I Wish These Genes Didn’t Fit

This is a first for me: A guest post. It is a piece my sister, Kristen, wrote about something important happening to her. I offered my blog as an outlet because her message is an important one. Kristen has always been a close confidant; a source of light and laughter for me. Thanks, Kristen. And thank you for reading!

I Wish These Genes Didn’t Fit, By: Kristen Trainer Dion

When I was pregnant with my youngest child, Willa, my mom was diagnosed with breast cancer. Looking back, it terrified me, but it didn’t come as a shock. “Here it is, again!” I thought. “The black cloud that followed her for most of her life.” Her mom and grandmom both died of the disease after fighting with everything they had. My grandmom had both of her breast removed in what they called a radical mastectomy. Still, she succumbed to cancer.

Now, I worried that my unborn baby would never know her grandmom. No Grammy sleepovers, or trips to The Dollar Store, or McDonald’s or to the movies. My other two children were so young, I worried that they wouldn’t know her like I never really got to know my grandmom.

I am so grateful that was not the end to this story, but the beginning of my own personal journey. When my mom’s health returned after chemo, her doctor urged her to get genetic testing  because of her strong family history, and the fact that she was not only a breast cancer survivor but she had also survived STAGE 3 Ovarian Cancer! #miracle #sheismeantobehere! Lol.

My mom found out she did in fact carry the BRCA gene, a gene that increases a woman’s risk of getting ovarian cancer up to 50% and breast cancer up to 80%. She urged me, well actually begged me, to get the testing done. I blew her off for a good while and then finally gave in just so she would stop talking about it.

I am so thankful she never did stop talking! You see, I am a carrier of the BRCA gene as well.

When I found out I had tested positive for the gene, I remember just breaking down. I was heartbroken and consumed with worry. I immediately thought of my daughters. What about their breasts? Will they be more at risk for getting breast cancer?  Will my son pass this along to his children? These thoughts were unbearable.

I know all too well the devastation of cancer and chemo. I have seen my mom’s beautiful bald head more times than I would have liked. I have witnessed her being so sick that she could not move or do anything at all. I have seen her body after she had both her breasts removed.

And yet, I have also witnessed pure strength and what the human spirit will do to survive! Like so many incredible, strong woman out there, my mom fought her way back to health–fought her way back from cancer–twice!!

About a week after finding out I had the gene, I started to realize the magnitude of having this information. I started to feel so blessed, so incredibly lucky.  I am grateful we live in a time where I have the opportunity to find out if I am destined to get this horrible illness. I believe with all my heart that if you are a woman with the BRCA gene in my family, you will get ovarian or breast cancer.  At the urging of my doctor, two weeks after my 40th birthday, I had my ovaries removed. I was to follow that up with an MRI, then 6 months later, a yearly mammogram. Sounded like a good plan!

Only, I am a mom of 3 and life gets in the way. What should have been an MRI in January turned into an MRI in November. Then, when I was at Fox Chase Cancer Center, the doctor found a lump in my left breast, and another under my left arm. I was overcome with fear.  Luckily, I only had to wait until later that day before they got me in for an ultrasound and all was fine. But in that time I waited, I thought of all the women who had a lump that was cancerous. Of the women who fought with all of their might to survive this disease. I thought of the families out there that had to watch someone they love suffer. I was so scared. I didn’t think I could be that strong.

I think my husband, Todd, was more scared than I. We talked that night, and he told me how he thought the odds were stacked against me. He told me he really wanted me to consider getting my breasts removed — that our family would be nothing without me, and he could not bear to watch me suffer. I am so blessed that he is my best friend! After a lot of conversations like that, I decided that I don’t want this dark cloud hanging over my head for the rest of my life. I don’t want to worry in between MRIs and mammograms that one day I will go in and everything won’t be fine. I don’t want to follow the same destiny as my mom, and my grandmom, and my great grandmom…. In my heart, I knew what I had to do.

And so, this Wednesday, March 18th, I will be getting a double mastectomy with reconstruction.  I know this may not be the right decision for everyone, but it is the right decision for me and my family. I don’t feel that this will in any way diminish my femininity, but empower me as a woman. It is so profound that I can take control.  Control of my health and future, and with this information I can make sure my children and future generations can do the same. As a mom, that is such an incredible gift!

Because of genetic testing, we have a fighting chance against ovarian and breast cancer. And for that I am deeply grateful! This is my story, my chance to rewrite my family’s genetic history. My dream is that my daughters will not have to make this decision because there will be a cure for breast cancer. My hope is that women continue to get genetic testing, so they won’t have to endure this horrible disease. My heart is with all the families that have had to watch someone they love suffer. My prayers are for the women who continue to fight with all their might. I pray for their healing; that they may  live a long and blessed life! My thoughts will always be with the beautiful women who have been taken from us in their brave battle against ovarian and breast cancer.

My mother and grandmother

My mother and grandmother

IMG_2923

Mom and me

dion family

My family

 

Gary On My Wayward Son

It came in a text message so short it could have been a tweet. It read: I love you and mom. Gary. And there it was, my son’s first genuine attempt at saying he loves me, sent to us via his older brother’s iPod Touch.

Now, if you’ve read my blog, then you probably know that I have two sons, neither of whom is named Gary. The Gary in question would be my eight year old, Hayden. And if you keep reading, I promise you’ll find out why we call him Gary.

When it comes to Hayden, I struggle with finding the right words to describe him, probably because he is such a dichotomy. The second born, he can be loving and kind one minute, angry and cruel the next. He is moody, he is temperamental, he is high maintenance, he is–dare I say it–me.

Hayden and I are a lot alike, and that’s why we tend to butt heads. When we’re not fighting, we get along famously. He’s the one whose more inclined to run errands with me, to walk the dogs, to go watch a high school basketball game.

But, I have a saying I use on him sometimes when he has tried my patience. I say, “And one day, Hayden, you will have a son of your own. And he will do these things to you, and you will call me on the phone and say ‘Dad, do you believe what he just did? I was never like that, was I?’ And I’ll say, ‘Oh, Hayden, you have no idea. No idea!'”

Our love for each other manifests itself in small ways. He’ll hold my hand when we’re walking in a crowded parking lot or the quiet fields near our house. He’ll rest his head on my shoulder as we sit and watch TV. He lets me kiss him goodnight. He even wants me to lie with him til he falls asleep. Yet, in the eight and a half years I have known him, he has never been able to say “I love you.”

When he was a toddler, I forced a few mumbles out of him, but never a clear expression.

The lack of “I love you, toos” used to bother me. I told myself to just keep saying it, and it would sink in for him to respond. But sometimes, my annoyance with his silence made me petulant. One night last year, I remember putting him to bed. Like every night, I tucked him in, kissed him and said:

gn.1

 

 

 

 

 

 

And in return, I got this:

gn.3

 

 

 

 

 

 

To which I said in an annoyed tone:

gn.4

 

 

 

 

 

 

To which Hayden responded:

gn.6

 

 

 

 

 

 

“SORT OF!?” I shouted, echoing him.

“Yeah,” he replied, “it means a little.”

So I gave up. I no longer cajoled. I never begged. I just kept saying it and meaning it. And in the past year, I’ve noticed him get more thoughtful about it. I see the smile on his face when we say those words to him. I see his eyes beam when we tell him how much he means to us. The other night, I tucked him in and did my routine of tickling/stealing kisses from him. When our game ended, and I went to give him his “official” goodnight kiss, I heard him whisper “fifteen.” “Fifteen what?” I asked. “Kisses. You gave me fifteen kisses.” I had two thoughts–well three: One–that’s a bit excessive. Two–how cute that he counted. And three–how much longer will he let me kiss him goodnight?

I do not know the answer to that. What I do know is that this boy understands he is loved. And I know it is reciprocated. A week ago, Hayden became sullen (for the tenth time that day). “What’s wrong, sweetie?” my wife asked him. He shared with her how he does love us, but he is not comfortable saying it. “Do you want me to tell dad?” she asked. He nodded yes. She obliged.

“No problem, buddy,” I said.  “We know you do. People show their love through their actions.” (My little passive aggressive/reverse psychology attempt at getting him to be nicer).

Then a few days after sharing his hesitation with us, we get the text. From our son…Gary. Hayden’s nickname came about as a coping mechanism. As a toddler, when he would pitch a fit, I’d say, “We don’t negotiate with terrorists.” This seemed a little extreme. Besides, I didn’t want to be blamed for giving him the idea if he became one, so I had to change my approach. When we thought of Hayden’s temper, Pam and I would joke about the boy in the movie Parenthood with Steve Martin. Dianne Wiest’s character had a son named Gary (played by a young Joaquin “Leaf” Phoenix). He was so angry and anti-social, yet she killed him with kindness. “Hi, Gaaaaaaarrrrrry,” she’d say with her sweet smile and kind voice. Gary was batshit crazy, but his mom was going to love him sane.

Pam and I took to saying “Hi, Gaaaarrrrrry” when Hayden became especially inconsolable.  As good parents, we tried to do it behind his back, or when he was out of earshot, and it was surprisingly therapeutic. “Hi, Gaaarrrrrrry” had the effect of a deep, relaxing breath. And as we slowly let our Gaaarrryyyy comments creep into our dealings with him, it became a way for us to try to kill Hayden with kindness. “What’s wrong, Gaaarrry?” “Awww, are you mad, Gaaarrry?” Our Gaaarrrrys would be extra long, an octave too high, and more sugary than a powdered donut.

As the years passed, the name found its way into more of our everyday lives. Now, it’s not uncommon to greet Hayden as Gary when he comes in the house from school or play. At first, Pam told me not to, but he piped in with, “No, I like it!” Oh, we still whip out our Gaaarrrry when he starts to act up, but Hayden has taken to the name–he has never seen Parenthood, although we did tell him about Dianne Wiest’s devil child.  Truth is, the more the name sticks, the less like Gary our Gary  Hayden is. How’s that for irony?

So, when I get a text from a kid named Gary who claims his love for me, I know I’m making progress. And when I get that phone call from him years from now about his own son’s behavior, I’ll say, “Put Gary on the phone, I want to talk to him.”

Cartoons by the talented artist Aidan Murphy.