I need your help, please...

I’ve been making notes about stuff I want to blog about because there’s been SO much going on personally, but I need to get things rolling on me being a part of the DFW Brain Tumor Walk. Since I’ve been dealing with this whole recovery thing post surgery, it’s really REALLY put things in perspective for me. Not feeling good sucks. I know that my tumor was benign and I have been insanely fortunate to have as few issues as I’ve had, but it’s still sucked. I’m still having headaches and light sensitivity and stuff. I’m blessed because I can deal, though. Not everyone is as fortunate as me.

I met with a woman named Marla the week before last about putting a team together for this walk. She’s the head honcho for this area of the walk. She somehow suckered me into speaking at the walk (J/K, Marla) and walking, too. In fact I’ve made a team called Bruce Willis SUCKS. Yes, I believe this both personally and in the context of my tumor being named after him. Since I’ve shared this journey with you guys, I want to welcome you to join team Bruce Willis SUCKS along with me.

I know what you’re thinking. There’s a registration fee for most of these walks. With this one, there’s NOT! HOWEVER, it would be really, really awesome of you to donate towards the cause. You will not find everyone at the walk wearing a cool t-shirt saying they did it because that costs money to make. Honestly, there are two goals in being a part of this. One of them is AWARENESS. October is Breast Cancer Awareness month, which is a fantastic cause and very worthwhile. It’s also one that has a ton of participation and support. Maybe it’s because Breast Cancer is an easier thing to understand? I’m not sure. I’ve been doing some reading and I had no idea that there are so many kinds of brain and central nervous system tumors. 120! That’s a lot to wrap your head around. I didn’t mean any pun in that, BTW. Some are aggressive, some aren’t. I was born with mine and no one had a clue until one day I thought my left cheek was swollen. How random is that. It was there for 32 years and I had no idea! Other people don’t have this situation at all. There are so many what ifs and so many possible situations with a brain tumor that I cannot even begin to get into them all. There’s truly no way possible.

I can tell you about an experience that I will never forget and it’s not a happy one. Well, part of it is a fantastic one, but the ending isn’t. If you’ve been a listener for a long time you at least know of Krista Brewer. She was a Kidd’s Kid back in the mid 2000’s and she had a personality that won your heart over in a second. Her parents were the most kind and patient people ever and her big sister, Shelby, is a person to truly be proud of. Krista was diagnosed with a brain tumor when she was 9 months old. Kidd heard about Krista and learned that she LOVED popcorn and wanted one of those old-fashioned popcorn machines. So he got her one and she would call us a bunch to tell us about her machine. She went through chemo and had a lot of ups and downs throughout her journey. At one point we even thought she was done with her chemo and had her call us to talk about her very last one. It was a great day and she was so excited. And then I don’t know why God thought that she hadn’t been through enough yet, but Krista’s mom, Janice, called and told us that they found a new spot on her knee that didn’t look good. That spot had spread to other parts of her body. Krista was put on hospice and on September 17, 2008, Krista passed away in her mommy’s arms. She passed away surrounded by those who loved her the most, but it’s so unfair. I’ve been through the passing of a child before and it’s horrific. I don’t know if it’s better knowing that the death of a child is coming or not, but I know that the pain of it is undeniably the most intense thing I’ve experienced. I lost my nephew, so I cannot even say that I’ve lost my own child. I just know that when I went to the Brewer house to talk to them leading up to Kidd’s Kids Day 2014, sitting there and seeing the chair that Janice sat in while she held Krista when she took her final breath was something that I will never forget.

Why am I telling you all of this? Because you know me. A lot of you have known me my entire adult life. I’ve been with this show since I was 17, so you’ve seen me since I was truly Psycho Shanon, begging for airtime, doing whatever it took to get the attention I wanted…even if it meant apparently scaring sales people with my poems and songs…to the Psycho Shanon I am now. I like to believe that I’ve grown up a lot and changed in the past 15 years and I hope it’s been for the better. Goodness knows I’ve had a lot of life experience in that time and that can make you grow if you internalize it and see that life really and truly is too short for the BS. Seriously. This past year has been like a bat to the head full of reality.

I know that I have talked a LOT about my experience with the whole tumor thing, but I don’t know how much I’ve told you about the feelings behind it. There have been a lot. There still are a lot. A lot of tears because, as a nurse told me after my surgery and right before I was released, that happens after you have brain surgery. But beyond that, there’s a lot of guilt. It’s hard having to ask your mom to miss work to take you doctor appointment after doctor appointment because you haven’t been released to drive yet. She put in her child rearing time years ago. Why should she have to do it again? There’s a lot of fear not knowing what in the world is going to happen next. I was fine for a week after the surgery, but then the week after I was in ICU for a leaky head. Then it was stomach issues. It’s like a whole new body and for a while, it scared me. I’m so thankful I’m not a circus performer because I promise you I would have been fired by now. Walking a tightrope is not and will never be in my future. I can walk just fine. I can run just fine. (Maybe not with the best form, but that’s nothing new). I can drive, skydive, fly, mountain climb…whatever. But it’s defeating when I realize that I used to spend summers water skiing and doing things that require stellar balance and now I have to hold a handrail to walk up stairs. I’m not ashamed at all. I didn’t do anything to bring this on myself, but it’s just defeating. And upsetting.

At the end of the day I’m fine. I might get headaches, but I’m fine. I might not be able to handle the million watt laser lights at a concert, but I’m fine. I’m lucky, so I feel like I should use my blessing to help those who aren’t as fortunate as I have been. I can’t write a ten million dollar check to fund research, but I can do one small thing, so here it is.

I can use the little bit of celebrity that I’ve got and Facebook following and Twitter following to help raise awareness and money for the cause. I can get up in front of however many people show up at the DFW Walk and speak about my experience and hope to inspire and encourage them in some way. I can say the biggest thank you ever to everyone who has stood beside me through my journey, but there have been far too many of you to thank individually. I have tears in my eyes thinking about it, though. I can give back some of what has been given to me by being a part of this walk happening on November 8, 2014 in Ft. Worth, TX.  I have a team called Bruce Willis SUCKS that, if you are in or if you will be in the area, you’re welcome to join. I will post the link at the end of this blog. If you cannot physically be there, if you could pitch in a few dollars towards the cause, you are making a huge difference and I add you to the list of thank you’s that I owe.

The fact is that I never thought in a million years that today I would have a scar on my head from it being cut open less than a year ago. I never thought that anyone would tell me that I lived with stuff in my brain that didn’t belong in there for 32 years. I never thought that my brain would be dangerously swollen or that I would have to have one guy holding part of my brain up while another guy pulled stuff out I never envisioned myself using a walker to go to Bed, Bath and Beyond or even the simplest places. The point is that you never expect it to be you. It goes both ways…the good and the bad. Just like people don’t do what they need to do to double their money in the Free Money Name Game…because they know they’ll never win…you think you’re never going to be that person being ordered to have an emergency MRI. I know I did. Look at me now, though.

My sister is pregnant and I pray daily that Baby Jake is happy and healthy. I pray that all babies are happy and healthy, but I know that this isn’t the reality. I see it year after year on the Kidd’s Kids trip. Every child is a huge blessing, but if we can do anything to help those who need it…child or adult…whether it be donate money or help raise awareness…I believe that we all should. Why not? If you want to make a positive mark on the world, here’s one way to do it.

Here’s the link to my team. Again, I’m not doing fancy shirts or anything like that. Maybe when it’s closer to the day of the walk, we can find a meeting place and all get together and say hi and hang out and stuff. Maybe I can grab some bracelets from work or something if we have any extras. I’m not sure. I can promise nothing other than to be there with pride hoping to help this really important cause. And I ask you sincerely to be there with me or find a way to help, too. Thanks so much for reading this really long blog and for any help you can give.

http://events.braintumor.org/events/dallas-ft-worth-brain-tumor-walk/donate?kwoAdvocateId=DQ9XGR2

And if my rambling means nothing to you, maybe this story will.

29-Year-Old Woman: Why I'm Taking My Own Life

A young woman who has fearlessly run half-marathons and climbed Mount Kilimanjaro now faces a more daunting task: taking her own life. But Brittany Maynard, 29, insists she's not the least bit suicidal, People reports. "There is not a cell in my body that is suicidal or that wants to die," she says. "I want to live. I wish there was a cure for my disease but there's not." Diagnosed with a malignant brain tumor, Maynard has moved with her family to Oregon so she can legally kill herself with lethal medication. Experts tell her that death by stage 4 glioblastoma would be "a terrible, terrible way to die," Maynard says, and "being able to choose to go with dignity is less terrifying." Her husband, mother, stepfather, and closest friend (who's a doctor) will be by her side when she goes.

Maynard has also joined the nonprofit Compassion & Choices, which is advocating for death-with-dignity laws in New Jersey, Massachusetts, Connecticut, Colorado, and California, Inquisitr reports. So far, four states—New Mexico, Vermont, Montana, and Washington—have joined Oregon in passing such laws. Maynard says she'll help the cause by giving California lawmakers videotape testimony in mid-October. Then, two days after her husband's Oct. 30 birthday, she plans to end her life. "I'm getting sicker, dealing with more pain and seizures and difficulties so I just selected [the date]," she says. "I'm dying, but I'm choosing to suffer less, to put myself through less physical and emotional pain and my family as well." See the Brittany Maynard Fund, or read about a woman who killed herself and left a note about right-do-die laws.

Here’s the link to my team page. Thanks again.

http://events.braintumor.org/events/dallas-ft-worth-brain-tumor-walk/donate?kwoAdvocateId=DQ9XGR2

And, just in case you missed them before, a few pics from my whole surgery journey.