So it’s May. It’s the very last day of May. How many times this month have I reminded anyone that it’s Brain Tumor Awareness Month? Zero. Zilch. Nada
It’s not that I forgot. Trust me I have thought about it a lot this month. But I haven’t been inspired to jump on my shrinking soapbox and shout (or type very loudly on various forms of social media). And it was bothering me, but earlier this week I figured out why I hadn’t been inspired to remind everyone that it’s Brain Tumor Awareness month and brain tumors are bad and they change peoples’ lives in ways too hard to explain. The reason is just that. First, everyone knows brain tumors are bad. Most people when you tell them someone has a brain tumor that say, “Oh my God! That’s terrible.” Most people assume (like I did for about 14 terrifying months) that everyone who has a brain tumor will die. Second, if you understand that brain tumors are bad – logically you have to come to the conclusion that people who have brain tumors have their lives drastically altered.
It’s a no brainer. Pun intended although it’s really not that great of a pun.
But for me it’s even more than that. I want to be one of those parents who takes the soapbox with me everywhere and launches websites and social media campaigns and raises money to “make a difference.” I really want to be that parent. But it’s not that easy. Because for me to get on that soapbox I have to relive 14 terrifying months of my life. And there’s a big part of me, a selfish part of me that doesn’t want to re-live that.
I’m not sure how some people do it. Like Liz and Jay Scott who run Alex’s Lemonade Stand Foundation. Their daughter Alex was diagnosed in 1996 with neuroblastoma at the age of 1. At the age of 4 she told her mom she wanted to have a lemonade stand to raise money for kids like her – she made $2000. In 2004 when Alex died at the age of 8 she had raised 1 million dollars for cancer research with her lemonade stands and now her parents and siblings run one of the largest foundations to provide funding for childhood cancer families and for cancer research. I just can’t imagine how her parents have gotten up out of bed for the last 10 years let alone continued to campaign for childhood cancer – but the do. I admire them.
I aspire to be like them.
Maybe someday soon I will get my stuff together and do something monumental. Unfortunately it’s not today. Today I noticed something I hadn’t seen in a while, but one of those things that takes me back to 2007 in a heartbeat. Teagan was getting fitted for her bridesmaid dress for my nieces wedding and when she was changing I saw the 2 inch scar just under her bra line (she’d be embarrassed if she knew I told everyone on my blog she was wearing a bra….). The scar that was so carefully placed by a surgeon with the explanation that when she went to prom or got married he wanted her to be able to wear a strapless dress without a scar near her clavicle. The scar left behind from her “button” which was a port for easy access for chemo and blood draws. The same quirky surgeon who placed the “button” also removed it and gave it to us in a jar and suggested one day she might want to make a necklace out of it. We have not made a necklace.
But that’s all it took, seeing that scar and I was back in 2007. And it’s not even that big or noticeable of a scar. Not like the giant one on her left arm that runs from her elbow to her wrist – put in place by a not so careful surgeon who wasn’t nearly as concerned about her prom or wedding day and left behind that large scar that did very little to improve her arm. Then she turned around to show the seamstress the back of the dress and there were the 2 other scars on the back of her knee and ankle – placed by a cheery pediatric surgeon who helped her walk better. Thank God we didn’t pull her hair up so I could see the S-shaped scar just over her right ear. That’s the big one, also carefully placed along her hairline so it doesn’t show, by a very careful surgeon who saved her life.
Those are the side effects of cancer. The tumor may go away but the side effects are always there. And we live and deal with those side effects every day. And maybe one day I will get past the side effects and put my big girl panties on and campaign like I always say I want to.
But unfortunately it’s not today.
Today I’m again telling Teagan she really needs to reconsider having a zipper tattooed along the scar on her left arm when she turns 18. I’m very lucky. She has that ever lasting sunny disposition to handle her situation. Maybe I can talk her into a nice rose vine or something other than a zipper before she turns 18.
I see those billboards all the time that say “My Scar Means….” and then gives some explanation of what the person pictured can do now that they had surgery. For Teagan her scars mean she survived – we survived. And that means more than standing on my soapbox any day.