20th GTBAD Letter

October 22, 2017

Twenty years. Twenty years is a life time. It encompasses birth and those first few years of wonder in learning the world around you. It encompasses school and graduations. It’s birthdays, learning to drive, drinking, voting for the first time, and all things that mark one entering adulthood. It’s first kisses and first loves. It’s seeing friends and family grow older alongside of you with their own celebrations like weddings and births. It’s joy and excitement for opportunities for the future. It’s life with all of its paradoxes and lightness and darkness. It’s overcoming and SURVIVING. 

And we all survive one thing or another!  But the beauty of life, the miracle of life, is that we as a species not only survive, we can flourish. We can love better and live life more in the moment because of our struggles. We are capable of such great things by adapting and overcoming our personal challenges. We also need to understand that the process of surviving isn't always pretty or without setbacks. It can be a terribly dark and lonely process where the beauty of life is hard to find. A place where depression and anxiety rules and where we have to rely on help to get us through. And why am I writing this to you in a letter celebrating life? Because after twenty years of surviving, I am continually reminded of all of this. That life, all life, is precious gift, and if we can look close enough we can realize how blessed we are.

For me, the year started off with an amazing and life changing surprise. I received a work vehicle from my boss and brother Chris. It was a bonus and job perk for the work done in the past three years. I did not have a personal car for 4 years, and my mom and I were sharing a vehicle which was pretty dang stressful for all involved. I can’t tell you how amazing it is to finally be independent once again.

Then in March, a huge announcement was made about One Cure, my personal cause. Through the tireless and selflessness of others, One Cure has become a national and international initiative. One Cure and the Tony Stewart Foundation announced a partnership that brought the One Cure car driven by the amazing and talented Jay Howard to the 101st Indianapolis 500, the largest racing event in the world. Due to the amazing support of others, my dad and I were able to attend and to see the wonderful efforts of so many people who believe in curing cancer for all species. We literally spent the morning of the race in the garage, on pit row, and then on the track with the One Cure car. Everywhere we went, all of the people were so welcoming, kind, and engaged in learning more about One Cure. The photo of me on the front wings of the car along with other cancer fighters, both human and animal, was also pretty cool, and I feel like I can say I’ve been in the Indy 500 now! Truly though, the most important part is that we were able to bring more awareness to people about One Cure and translational medicine. 

Besides the Indycar side of racing, One Cure was given sponsorship status in NASCAR through a very generous donation by one of the most amazing individuals. Danica Patrick, the No. 10 car for Stewart-Haas Racing, has had the One Cure logo on her car twice this season, and then on August 19th at the Bristol, TN race, CSU One Cure car was the main sponsor of her car. At the last moment, and due to unfortunate circumstances of one of the planned attendees, I attended the race in their place. It was such an amazing trip getting to meet Danica and experiencing every aspect of NASCAR including watching the race from the pit box behind the crew chief! To put it mildly, I am now a fan of NASCAR. I’ve been watching NASCAR every weekend since February and I can name most of the drivers, how they are doing, their sponsors, etc. I quasi-jokingly told my parents when I came home from Bristol that my new life goal is to be a race car owner. Hey, it’s good to have life goals!

 

To further round out the blessings of the year, in the last month, I was notified that I was receiving hearing aids from an amazing organization called HearStrong through the generosity of Widex, a hearing aid company. One of the people attending the Indy 500 in the One Cure contingent, Catherine, works for a company that helps independent audiology clinics on the business side, and when she found out I’d been having problems with my aids as well as how old they are, she started working without my knowledge to get me new ones. In the week since, I’ve had the aids, I have noticed a drastic improvement. The best part is that my new aids are Bluetooth enabled, so I can use them to make calls and stream music directly to my hearing aids. It’s simply amazing. As any person with a disability, adapting and overcoming that disability can be tiring and stressful. At work, I have always struggled with anxiety in hearing the people I interact with and especially when I use the phone. Now, I no longer worry about that because I can truly hear the people on the other end!

But like life, not everything is rosy all the time. We’ve had quite a few health issues in the family. My dog Gertie became really sick last year, and we finally took her up to CSU in February to get checked out. Turns out she has Cushing’s disease which means her body overproduces cortisol, the stress hormone. It’s pretty ironic because I have the opposite problem; my body no longer produces cortisol naturally due to all the steroids I am on. She is now back to her normal puppy and loving self thanks to the amazing vets at the CSU Animal Hospital.

In addition to Gertie’s health woes, my grandfather has been very ill on and off throughout the year with multiple hospitalizations and illnesses. It’s been a struggle for our family to adjust to my grandfather finally showing his age especially since he has been so vibrant up until now.

 

We also found out in the last two months that my mom needs a corneal transplant. With knowing some about transplants and all of the side effects and limitations that they bring, we were fairly scared about moving forward with this. After consulting with her surgeon, our fears were allayed. She won’t have to take any systematic medications, which have horrible side effects, and because it’s not a critical organ, they can wait for good corneas to be donated. The only bad part is that she’ll be blind in one eye for a year, but after that she should have much better vision without the hassle she lives with now.

For me personally, this year has also been really rough alongside all the awesome things occurring. Work has been pretty stressful the past year. And with not feeling well myself, my stress and anxiety spiraled out of control. It’s something that I’m sure has building for many years, and finally, I couldn’t deal and shut down this past year. In the last few months it was pretty bad and lead to depression, so I finally sought help which for me is a really hard thing to do and to talk about. But thankfully, I have an amazing doctor who put me on a medication to help with all of it. I’ve also been working on my coping skills and my work life balance which is also helping ensure that moving forward life isn’t out of skew. These days as a society we talk about mental health issues a lot, and I think that while we aren’t all comfortable talking about our own, it’s imperative that people know it’s okay to seek help and say that they are not okay.

I also want to tell you that while this 20th Glad to Be Alive Day is so incredibly joyous, it’s also incredibly bittersweet. Too many loved ones, too many friends, were not able to survive twenty years, let alone one or two years. Their life and their stories ended without seeing those milestones and celebrations that I have been so blessed to see. This is one of the struggles this year, as it always is, the struggle of Why Me. Why was I so blessed when others were not? I know that there will never be an answer to this, and trust me that this is not the focus of this letter. But I want to just say that, I have never forgotten, never stopped loving. These fighters are always in my heart and celebrated too on Get Bad Day because they too lived and fought for all they were worth. Their battles were not lost. As Stuart Scott, an ESPN anchor who died in 2015 from cancer said at the 2014 ESPYs: 

“When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.”

So that’s been my year so far, and it’s not over yet. I am so fortunate to have survived, and I know how lucky and blessed my life really is. I continue to thank God for the miracles He has given, and for the people He placed in my life, YOU. You have made an impact on my life with your encouragement, love, thoughts, and prayers. So on this very happy and momentous 20th Glad to Be Alive Day, may we be reminded to see the beauty of the world when life makes you see only the darkness. Happy Get Bad Day to you the people who make my life as bright as it is!

19th GTBAD Letter

October 22, 2016

Fall is here. The leaves changed. We saw the bugling elk. We hunted for and found the Great Pumpkin. The nights and early mornings are cool once more, and as I write this, fog is still lingering, unwilling yet to let go of its hold on the world outside. Kind of like me this morning unwilling to leave the warmth and comfort of bed even to write you this letter. So here I lay, breathing deep thanks to my friend Vinny, my portable ventilator. Despite my overly relaxed state, my wishing you a very Happy 19^th Glad to Be Alive Day is no less earnest.

Life plodded along this year as it does every year. A brief recap of events this year includes: starting a new job working full time for my dad’s company as an office assistant (so grateful for learning more about his life’s work as well as his everlasting patience even when he catches me still asleep at 9 in the morning); continuing working part-time for my cousin Chris and his two thriving and expanding companies, Rowan Electric and Rowan Technologies (his entrepreneurial spirit and knowledge is amazing); welcoming my youngest niece Charlotte Emily Willey, daughter of my great friends Bre and Erik, in January (she’s so cute!); turning 30 (unfortunately I was sick); going to Vegas to meet my second cousin from Germany (again, I was really sick); and spending a lot of time with my family especially with my other niece and nephews, Sarai 17 months, Rowan 2, and Titus 4.

By far one of the biggest excitements was my continued involvement in One Cure, an initiative that focuses on translational/comparative oncology, meaning comparing naturally occurring cancers and treatments used in animals (dogs and cats) to those in humans and vice versa. One Cure is based out of the Flint Animal Cancer Center (FACC) at Colorado State University, where I interned for a summer. Those at the FACC and I have extremely close ties thanks to their involvement in my own treatment. Since last year, the FACC took huge steps to become a more prominent part of the conversation on how to treat and cure cancer in both humans and animals. To continue making a national impact, a brilliantly done short documentary made by my friend Joe Vasos was filmed and aired semi- nationally in 30 different PBS markets. My parents and I were asked to share our story and ties to translational oncology and our belief and hope in One Cure for the video. If you have not yet seen it, I urge you to watch the trailer on YouTube while we wait for the full video to be released online: search for “The Answer to Cancer May Be Walking Beside Us.” You can also learn more about One Cure and my connections to this wonderful organization at www.csuanimalcancercenter.org/onecure.

This year emphasized how the little things in life are often the most beautiful and miraculous! From the changing of leaves in the fall to breathing and walking, life is full of wonders and little miracles. Next year will be my 20^th GTBAD, and I find the anticipation building. I truly hope to celebrate big next year in some way.  It boggles my mind that it’s been twenty blessed years since that fateful day when doctors gave me three months to live, and I continually thank God for all the support and love I continue to receive! As always, you all are one thing that keeps me going every day, so from my heart to yours, Happy 19^th Glad to Be Alive Day! May your days be filled with love and laughter as mine are.

18th GTBAD Letter

October 22, 2015

Happy Fall Dear Family! It’s that time of year when leaves change and fall, when orange IS the new black, and when a certain someone goes crazy for pumpkins, giant pumpkins. Yes, I have an addiction that I am only slightly ashamed to admit. Among other things, October is also that time of year for an anniversary, my Glad to Be Alive Day—my 18^th to be exact. Because my 30^th birthday is only a few short months away, I feel more an adult than ever, especially given that I’m celebrating my second 18^th “birthday”.

I know for some of you, you’ll be reading this letter after the date, and I want to start with an apology for not writing this sooner. To be completely honest and open which some of you know is hard for me, I didn’t want to write a letter this year at all. I’ll pause for a moment to let that settle in. That’s right; I didn’t want to mark this year’s GTBAD with the one tradition that has not changed in eighteen years.

Which leads to the next admission from me: I am tired.  No, I am not merely speaking of the kind of tired that you get because you haven’t slept well or went to bed too late. Nor is it the kind of tired that you get when you have chronic illness or acute illness where every minute of every day is filled with a body’s battle to survive. I am talking about the soul crushing tiredness, and let’s be honest depression, that comes with eighteen years’ worth of medical complications that have left both my body and my mind kind of done. Which for me is pretty unheard of. Because remember those eighteen years? Those years never completely took me down quite like this.

For me, a lot of my struggle is that I am finally processing what happened last year around this time when we received the news about the BO, bronchiolitis obliterans. I would like to point out that BO might be more accurate than you think. Those night sweats from the steroids can leave you quite stinky. At this point last year, the idea of new limitations had yet to set in. I thought, “Take some medicine. You’ll feel great,” and I did. But with massive steroids comes massive side effects which are minimized by stretching out the steroids to longer periods where I don’t get that amazingly false feeling of being healthy. So, I started to overdo it and overdo it. At twenty-nine,
I thought, “Step it up Emily. Now you need to be a responsible adult.”

And then my mom got really sick in March. Like needed to be in the hospital but refused to give in sick…wonder who she gets that from. She’s doing much better now, but she is still recovering. Because I know it’ll amuse her, she’s on oxygen now due to low oxygen saturations, and she likes to call us the oxygen twins, our own little circus.

With her sick, I tried to take over a lot of her responsibilities, babysitting my adorable nephew Rowan, household chores, cooking, etc.; again, the adult parts of life. All the while, I still had my own responsibilities, work, my own chores, and managing my own medical issues. Let me just say I failed massively because one of those things on that list got tossed to the wayside and it wasn’t the normal adult responsibilities either. Today, I am paying for wanting to be normal. Sure with exercise and prioritizing my life, I can, and will do better. And no, I did not do myself any major harm, but I have in the process shown to myself that normality may not be in my reach. Above all, that makes me immensely sad because I suppose I always thought that normal would be within my reach.

Before I leave you all in the same state as I am, I want to tell you that there is still joy in my GTBAD this year just as there always is. Because it comes in the form of tomorrows. I have had eighteen years of tomorrows that have made my life incredibly blessed because it gave me the ability to see and do things I never thought possible. Plus, I always hope. I hope that tomorrow is much better than today and this year. I hope that life stops throwing such wicked curveballs at my family and me. I hope that I will learn to manage my health better than I am now. I hope that nothing will keep me down because I KNOW it won’t. This past year has just been an accumulation of bad events, and they happened to get the best of me until now.

Do you want to know MY reason for even having a GTBAD, the reason I write this letter every year even when I sincerely don’t want to? My GTBAD is a chance for me to reconcile all that has gone on the past year and to come to the realization that my life has been, is, and always will be blessed. No matter the small and sometimes big things happening in my life, I got this. My life is amazing and will be amazing because I choose to believe so. So like the old adage, I count my blessings: my parents, my brothers and sisters, my family, my adorable little nephews and my beautiful little niece (yes I now have a niece!), my dearest friends, my faith, my wonderful jobs, my crazy dog, my coffee, my giant pumpkins…Okay, I’m straying a bit, but the idea is that I have food in my stomach, a roof over my head, relative health, and amazing support. Blessed indeed.

On this 18^th Glad to Be Alive Day, I want all of us to remember that positivity is not innate. It has to be worked at, especially as an adult. Our culture and the responsibilities of adulthood can drive the positivity right out of any adult’s life. Adult responsibility stresses us out and makes us incredibly grumpy sometimes, and yes, I am speaking personally, but the key to happiness is balancing it all. My tomorrow is figuring out the balance of my health and what I dream of doing as an adult. I don’t quite know yet what that looks like although I know it won’t look like a normal adult. And that I am learning to accept.

Happy 18^th Glad to Be Alive Day! May you remember you are blessed with all the tomorrows you had and will have in your own life.