Thursday, October 30, 2014

Help Me Out!!!

OK so there's a lot of info I need to share with you guys, so I'm putting it in a blog post instead of on Facebook. The DFW Brain Tumor Walk is a little over a week away, so it's crunch time.

I have to admit that perhaps my goal of raising a million dollars might have been a little overzealous. I'm not upset about falling short. My goal is to raise awareness and yes. Money. It's pretty important in that whole research part of things.

It was one year ago this week that I was diagnosed with my tumor. It will be one year ago on November 11 that I had it removed. I have to tread lightly with my words because some people have chosen to use my surgery as something to be held against me and have basically said that I'm incapable of performing basic adult tasks. That is their ignorance at work, but I choose not to feed it.

I've been on the Kidd's Kids trip a bunch of times now. I honestly don't know how many. It's life changing to see how medical conditions can effect the lives of people. You see specials on TV and read stuff in newspapers and magazines, but it's a completely different thing to experience it first hand. You go from being that clumsy kid who gets hurt all the time to the invincible teenager who can do anything to the adult who thinks they're out of the woods back to having to worry about what's to come with age. It's really strange how life works.

With Kidd's Kids, I see kids who don't get to be clumsy and experience the normal bumps and bruises most of the time. They spend their days in hospital beds and getting home schooled because they can't afford to be exposed to all of the germs and stuff that other kids bring around. I see the look on parents faces when they know that their child will not outlive them. I've seen and cried with parents who have lost their babies. When it comes down to it, life just sucks sometimes.

You look around at everything that's been going on lately and how advanced medicine has gotten. We have this big Ebola scare like three weeks ago where everyone is in a panic thinking there's going to be an outbreak and now the two nurses who contracted the disease have been released and are back to normal life. How insane is that? At the same time, though, how frustrating?

I think back to the Krista Brewers of the world and all that she went through in her battle with Neuroblastoma. It pisses me off so much that that little girl and her loved ones suffered and still suffer to the extent that they do. It's not fair. To never feel good. I think of Penny Jurkash who is so self-conscious of her hair that she won't leave the house without a beanie on her head even if it's 104* outside. And her brother, Joel, who is so sweet and supportive, but has to miss out on so much because his little sister is sick. Why them?

At the end of the day it all comes down to two things. Awareness and money. Period. The end. I think I said before that the Susan G. Komen Race for the Cure is an amazing thing because it has achieved both. It's raised awareness and gathered so much support year after year. Millions of dollars are raised for that cause and it's truly a beautiful thing. If I had dealt with Breast Cancer over the past year, I know I would have been on here this past month preaching about the significance of continuing to support that cause. I didn't though. I had my head cut open to remove some build up of skin cells smack dab in the middle of my brain. They had been there since birth and finally gotten big enough to cause my brain to swell and cause physical symptoms. Once the meningitis was controlled, they went in expecting to get most of it out, but not all because it was in a terrible spot in my brain. But with the help of two fantastic neurosurgeons and the grace of God, they got it all out. Now I'm here preaching about the significance of spreading awareness about brain tumors and, of course, raising money for research.

If you don't know, the brain controls everything in your body. So having anything in there that doesn't belong can really screw you up. Getting hat doesn't belong taken out isn't cheap. The MRI's to have what doesn't belong checked out are insanely expensive. You know that healthcare is a profitable business and that money isn't going to the doctor's. It's sad, but it's true. You think that doctor's are rich and going home to million dollar mansions and stuff and yes, they do make nice livings. But it's not like you think. At all. The healthcare business is full of greedy insurance companies and hospitals that will charge you $20 for a single Tylenol. It's insane. The insanity is NOT going to stop unless we take a stand and do our part to make a difference.

That's why I'm asking for your help. It's like we tell you on Kidd's Kids Day. I'd love it if everyone could donate a hundred dollars. That would be awesome. However, I know it's not possible. Life is expensive. It's the small donations that add up. If you can't donate, pass the link along to friends and family and maybe they can. We even have cool t-shirts now that we're selling for $20. The pic of the shirts is on the bottom along with info on ordering. This is important to me and I'm going to do what I can to become an advocate for research. This is step one. It's a baby step...I know. But it's a step.

If you are interested in purchasing a shirt, go to my facebook page. Here's the link.

Send me a private message with your name, email address, size, and let me know what city you're in. If you are on my team, you will have to purchase a shirt still. You can get it the day of the race to save on shipping. I still need to know your size.

I will either send you a PayPay invoice and mail you the shirt or we will do a mass pickup to save on fees so that more is donated to the Brain Tumor Association. What I will do is pay the cost of the shirt and donate the remainder to the Brain Tumor Fund. None is going to me personally or anyone else.

If you are in the DFW area and want to walk on my team on Saturday, November 8, you can join at this link.

I want to say a special thanks to a few organizations who are showing extra support in my first step to becoming an advocate. Thank you to Dr. Rob Dickerman, Dr. Brent Morgan, Ashley, and everyone else at the North Texas Brain & Spine Institute for getting my brain all cleared up and for helping me out with this walk. And, of course, thank you to our flagship station, 106.1 KISS FM in Dallas for showing me love since I started in radio in 1999. I'm still here because of continued support from my KISS FM family, so thank you all very much.

Wednesday, October 8, 2014

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.

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

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.

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