Rambling

It seems a little weird to me that I haven’t blogged since we found the lesion on my Brain. What, what you say. Well for those of you who don’t know we found a lesion lying on the Dura Matter of my brain in late July. With the exception of a couple spots on my liver that have since resolved, we had considered my disease as bone only; as bad as bone mets  are, people can live for years with bone only disease. So what does this mean now? I wish I knew. It sucks when your new Radiation Oncologist says, “I have seen a lot of bum deals, but this is the worst bum deal I’ve seen in a while.” He is referring to the fact that I am only 30 and have a young family, not that I necessarily have it worse off than his other patients. He is actually really great Doctor. I have nothing against my first radiation oncologist but I never bonded with her and I didn’t feel like she really considered the questions my husband and I had. Anyway the way the lesion is spread over the left side of my Dura matter of my brain as opposed to a focused tumor in one or two spots. This means surgery is not currently an option. Neither is focused radiation, (which means they focus on just the tumor with the radiation stream) Instead, I get to do three weeks of full brain radiation. I have finished one week. This is a onetime deal. We don’t get to go back and do full brain radiation again because it is too dangerous. I maybe have one week left of my hair, (which I bleached last night and plan on one more pink hoorah today). I can tell my head already feels burned. My tongue actually feels scalded. My taste buds are off (sweet doesn’t taste right) but they have me on steroids to relieve any swelling so I still want to eat all the time. The steroids have made my face round which will look even rounder when I am bald. My face is actually puffy enough that my glasses are too tight but I am scatter brained so I keep forgetting to have them adjusted when I am at Costco. I may or may not get increasingly more absent minded. I have already noticed that typing is much harder, like I was good at it before. But the most common significant side effect is fatigue. I had been feeling tired to begin with and I have noticed a little increase but so far the steroids seem to be giving me enough energy to get by. Oh actually, the funniest side effect (if you want to call it that) is the fact that during radiation that hit some of my cranial nerves, (it doesn’t hurt) but while it is happening I smell Jack-o-Lantern. Like the way it smell after the candle has been in it for a little while. This is OK. I don’t mind it. I love Halloween so I guess it is appropriate. But even with these side effects I think I am managing very well so far.

I also need to use this platform to thank my sister In-Law Brenda. She has been and is amazing. She coordinated to have dinner brought in the whole time I am on Radiation. It is hard for us to accept this kind of help; it feels sometimes like I don’t need it yet. Maybe I don’t want to need it yet. But the truth is it has been an incredible help. Thank you from the bottom of my heart to all of you that have brought and are still bringing dinners. Also thank you Darcy, you have always taken care of me but the amount of help you give my little family is incredible; always watching my daughter, checking in on me, just hanging out with me.  And thank you beyond words for all of the work you have done and are doing to throw a benefit for me. Your kindness is overwhelming. The love people have is beautiful. It makes me feel like I must have done a few things right in my life to have so much love surrounding me. These thank you’s are of course not limited to the two of you, Thanks to everyone helping out, watch Makena, those checking in. Even those of you that I know are just waiting in the wings for me to ask for help. I love all of you so much. Even the love sent from my little monster family who I only know through online interactions build me up on a daily basis. All this love carries me through and keeps me wanting to fight, fight, fight.

So how do I feel about all this? It depends on the moment I guess. I have been through a huge array of emotions; crying to start, yelling a little, cuddling with my husband, fear of course, worry, upset stomach, ignoring it, thoughts racing, angry, and yes even peace. One of the biggest things that pissed me off is I am designing for two different charity fashion show, and coordinating a large Charity event for a domestic violence shelter and I am terrified I won’t be able to produce. Crazy huh? It is funny how much of the mental fight involves me forgiving myself for not being ‘the perfect cancer patient.’ Everyone involved with these events have been amazing, understanding and supportive. It’s not like I am going it alone. Any way I made huge progress last night. My husband worked a grave yard shift, and Makena went to Grandma and Grandpa’s for the night and a sewed till mid-night. It was the first time I realized that I am really going to pull this off.

Well I have rambled for quite a while now (another side effect of steroids) so I will sign off for now. And as always I will write when I feel so inspired. These blogs aren’t worth anything to me or you if I force myself to write on any sort of a dedicate schedule. Thanks for reading my ramblings.

My chubby self around 9 or 10 months

Better Late Than Never

Once again I am posting well after the fact, but this letter is important for me to share. I love you Grandma.

                      A Letter to My Grandmother

Dear Grandma,

As I grow older, it comes to my attention that my generation is not good at sending thank you cards. I am writing you this letter because I want you to know that this flaw belonging to your grandchildren, does not translate into ingratitude. We are beyond grateful for your many gifts and lessons.  Thank you for all of your amazing quilts.  They keep me warm at night and constantly remind me of your love.  Thank you for sharing your talents with me. My love of sewing can truly be accredited to you.  Thank you for teaching me the worth of a human soul. Thank you for showing me unconditional love without judgment. Thank you for teaching me to give without expecting anything in return.  Thank you for teaching me that disability is not inferiority.  Thank you for teaching me that family above all else is the key to happiness in this world. Thank you for teaching me that helping others helps me in the process. Thank you for being my Grandmother.  I love you and am forever grateful to have you in my life.

Megan Elizabeth

So I am not sure why I keep posting things after the fact I actually wrote this on the day of my last post but was distracted with things at my Grandfather's Rehab Facility. Heres to you Grandpa.

There is nothing quite like watching someone else in pain to make you forget about your own. I am currently in Montana because my sweet Grandpa is in the hospital. As I sat at home knowing he was in the hospital I felt helpless. Without really the time or money I decided I needed to go see him, as well as, my Mother and Grandma who had taken the entire burden so far. There will soon be relief from other grandkids and my Aunt (Grandpa and Grandma only had two daughter, my Mom and her). There is quite a network of family and friends that thinks the world of him. The impact he has made on this world is great. I have always loved my Grandpa deeply, without bias or condition. Our relationship has always been easy and uncomplicated. He has always believed in me and supported me through my ups and downs.

 He has had several falls in the past week that caused both rib and vertebrae fractures, and after going to the ER twice last week, his foot had run in with their in home elevator. Unfortunately the elevator won and he shattered his big toe and broke a couple small ones.

Grandpa is a man that doesn’t like to be idle but age has dealt her cards causing him to slow down to a level that he is unacceptable to him. He has a care taker, of his family, of his friends, even strangers that need help. He was a volunteer firefighter for 14 years and the chief for six, helping them to build the fire station and the trucks. He has selflessly volunteered his mechanical abilities to neighbors and strangers alike; never turning away a widow that needed a helping hand, at the expense of his own time and money. He has worked hard his whole life; always saving his pennies to be able to support his grateful family. He built his shop and his house from scratch. He paid for everything it as he went; never owing the man. Grandpa has a very mechanical, practical mind. He never saw a car he couldn’t fix. If he needed something, he made it, including a snowmobile, a V8 welder, a tree sprayer, a riding lawn mower, a fan, and so much more. He loved old engines and spent a lot of time refurbishing them and going to tractor shows. He played the fiddle like a pro; often hosting jam sessions. I remember several trips to fiddle competitions. When a young child had an amazing talent for the fiddle his heart would melt. He built a hay manger in his backyard for the deer and elk to feed. He and Grandma had bird feeders everywhere. They also have had a resident squirrel family that live just outside their dining room window. They pretend that the bird seed is just for the birds and he has created many a contraption to keep the squirrels from getting on the feeder and eating the seed, but the truth is they love the squirrels (despite the fact that the squirrels throw pinecones at your head and laugh at you) and they think it is hilarious when the squirrels crawl across the window screen and leap to the bird feeder.  They have always loved nature. Watching animals on their property has been one of every one’s favorite past times. Bears, wild turkeys, deer, elk chipmunks, squirrels. The list goes on forever. It always seemed to me that their home was a little slice of heaven.

If it hasn’t been apparent, I love my Grandpa very much. I think sometimes that he hung the moon just for me.  For now it seems like he will be fine. We are headed to a skilled Rehab center this afternoon where he will get tailored therapies to help him heal. Rehab will be a good thing because he will get stronger and be safer when he does go home.

I guess I have been writing this blog to lay out my thoughts. To share with the world what a great man he is and how lucky I have been to have him in my life. When you have late stage cancer you spend a lot of time contemplating your own mortality. When you are young and dying it feels like the natural order of things has been upset. But as I sit here watching my Grandpa and cope with the fact that he too is not immortal I remember that I am lucky; lucky to have so many wonderful relationships in my life; lucky to have perspective about my own life

I love you Grandpa.

Selective Reading

So I am not sure why I didn't post this a couple months ago when I wrote it. I guess I didn't feel that it was compleate. Anyway here it is.

It is funny how much other people’s comments can affect us. Watching the comments about my video on YouTube I am reminded of how kind people are. How supportive even strangers can be. But every once in a while I get a comment from a hater and it takes a minute to remind myself that these cruel words don’t matter. It is almost as if I need ten good comments to make me feel OK about the cruel one. So why do I even care? First off, I don’t know these people; they have no control of my life; and they are the small minority among a huge positive response. I guess it comes down to the fact that it is difficult to put yourself out there. It is difficult to change the habit of believing that I might not be good enough.  Well the truth is no matter what the outcome of this process is, I am good enough. I have a huge scaffolding of family, friends and even strangers that have given me their love and support. I will do my best to silence the voice of doubt in my head and push forward. Thank you all for supporting me.

Thank You Little Monsters

So I said I would take you on this Lady Gaga journey with me. I have to start by saying I am so overwhelmed by the kindness and generosity of others. People all over the world are getting behind me and tweeting and Face booking my story all over the place. It feels incredible to read the sweet comments of others.

I want to start by thanking my Family and close friends for getting this ball rolling. First my sister MaryAnne, and her friends, thank you for reading my blog and doing everything youu could to start getting the word out. I can’t be grateful enough for the people who pushed me to make the video and didn’t just let me continue talking about it as something ‘I was going to do.’ Thank you Lois, for writing the first news article about me. You wrote it in such a thoughtful and inspiring way (despite the fact that you were in the middle of your own family trauma). Thank you Karin, for writing the second news article about me which focused on my bucket list. Karin was really the one who gave me the fire to make my video because I would never want to do something make someone else miss their deadline. And then once I posted the video, thank you to my brother Matthew who immediately started sharing and posting and brainstorming how to keep it going. Also thank you Maureen, for immediately posting my links and pleaing to your large group of friends to help me out.  Darcy, you believed in me to the point that it was intoxicating, thank you. Thank you to my Brother and Sister in law, Braden and Brenda, for always checking in and seeing how I was doing and what the next step was and making sure to post every new update. Robin, Sean, Mikayla, Brad, Norman, all of my friends on FB thank you; you really helped push my video out on YouTube. Thank you Jennifer Stagg, from KSL , for creating such a beautiful news story that got the ball rolling for a second time, getting people to watch the YouTube video again. Since your story my YouTube video went from 8,200 to over 21,000 hit in just 36 hrs. It also trended worldwide on Twitter for a short while. I can’t thank you enough for giving my dream a second breath. Thank you my beautiful daughter for making me want to dream again. And to my husband, despite the fact that you detest all of this attention, I know how important your privacy  is; you still supported me and celebrated each milestone with me.  I Love you with all my heart. You are the love of my life and the center of my true happiness. I thank you for all of your support, for giving me the most beautiful daughter in the world, for being such an amazing Dad and for being the best husband a woman could ever ask for.

Next I want to talk to the Little Monsters. I have never felt such a heartwarming instant embrace by another group of people anywhere. Your willingness to get behind one of your own is note worthy. I feel like regardless of what happens next that I have succeeded. Thank you from the bottom of my heart for supporting me and helping me to get the word out to Gaga. Paws up to all you. May you see your own dreams and believe in yourselves the way that you believe in me. And those few sweet monsters that are struggling in a dark place of feeling worthless or unaccepted; please don’t give up. You are beautiful little monsters. ‘You were born this way.’ Don’t let the haters get you down. Once you believe in yourself and love yourself, your energy will change and others will naturally gravitate toward you. Give yourself the amount of credit that you have shown to me and you will go places.

Great Thanks and Love to all of you. Thanks to you, Megan Elizabeth Designs                   

aka Girl in The Middle Will go far. Thank you, Thank you, Thank You.

My Lady Gaga Video Plea

So here it is. I didn't think about my blog this morning when I was sharing it. But here is the link. Thank you every one for your support.
http://www.youtube.com/watch?v=-eZ6BIAqCEY

Bucket List Update

So let me give you the latest update on my bucket list. I want to start by saying what amazing friends my sister has to be willing to jump in and try to help me.  There was an article posted about me yesterday in the Deseret news. It was part of a five part series on Advanced Directives, an important topic for all ages. It is trying to draw attention to the need for people of all ages to think about what they would want in illness and in death.  If your loved one unexpectedly fell ill or even died, would you know what their final wishes would be? 

So back to the update on the progress I’ve made on my bucket list. I have someone looking at my children’s stories evaluating if they are publishable and if they are, she has the ability to hook me up with and illustrator and then publish them. I couldn’t be more excited. Just having someone look at my stories and give me advice is an honor. Next update is about my wish to design a dress for Lady Gaga. My sister’s friend Karin who is a freelance writer pitched my bucket list story to the Salt Lake Tribune and they liked it. This story will post tomorrow Thursday, March 1^st, and my YouTube video Plea to Lady Gaga will post on Friday March 2^nd. Of course I will post all of these links to this blog for your ease of access.   But of course that come with a request that you pass it on. This is the only way this Social Media stuff works.

I also want to speak a little more about this journey. I am currently spending my life in a three week rollercoaster. The week I get chemo I feel like not doing anything and as most of you have figured out I don’t want to talk to anyone.   This is also the times that I feel most down. This is when I think that this bucket list thing is stupid and not worth pursuing. But then week two of my chemo cycle hits and I remember life is worth living, that people are wonderful, and that I am still capable of living my life to the fullest. Then week three comes and I feel even better and this is the week I actually get things done. I wanted to share this because we all get these ups and downs and I think it is often easier to let the downs control us. The truth is if I didn’t go out on a limb and write out my bucket list and then choose to share it with you; I never would have gotten responses of support and I certainly wouldn’t have connected with people that could help me. This helped me in two ways I was able to connect with these wonderful people that could help me but also it put my wishes out there in a way that I couldn’t ignore them. To get this bucket list article into the Salt Lake Tribune required me to give them a promise date of when I would post the YouTube video. This alone has been the kick in the butt that I needed to get going on this dream. I can’t wait to share it with you and to see where the cards lie. There are so many times in life where we don’t play an active roll in our dreams, we sit on the sideline hoping the right connections will magically walk into our life and make our dreams come true for us. Dreams take hard work. But they are definitely worth it.

I thank all of you for your support; Thank you for everyone who reached out to me to help; and thank you all everyone for believing in me. It makes it easier to continue believing in myself.  

The following link is the Deseret Newpaper Article that I was feature in

http://www.deseretnews.com/article/765554542/How-will-I-die-A-good-life-a-young-death.html