…how do you live?

This post is actually a reprint. It was originally written as a blog post inMay of 2013. But, I submitted it as a guest blog entry for cure magazine and they asked if I would hold off and let  them publish it in the winter edition. As you guessed, I held off and it is printed in the current Cure magazine. For those of you that missed it, here it is.

As I look over what I write so much has changed- My vision has significantly deteriorated, as well as my left side.

This week, my parents are moving my room to the first floor because the stairs are becoming a safety concern. I'm ok with it but it is just hard to face how sick I am. I hate being so reliant on others but I need a lot of help these days. I'm so lucky to have patient and caring parents. I couldn't do this without them.

"How do you live?"
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Will it rain today? Will I get a bonus this year? To an extent, we all live our lives with a level of uncertainty. But some questions are unique, and harder to answer. Will I wake up tomorrow and be blind?

People who meet me in public never know that I’m sick until they are told. Even at the hospital, I have wondered if those in the waiting room think I’m accompanying one of my parents. Not until they see the tape on my arm from the IV do the suspect that I might indeed be the sick one.
For most people, they do not need to shut their eyes wondering if it is the last time they will see. But for me, the doctor’s aren’t able to estimate the probability that I could go blind at any moment. There is a new tumor that is growing on my optic nerve that has already stolen all vision in my right eye and threatens my left eye with every passing day. More than likely, the optic nerve tumor came from a loose tumor cell from the original brain tumor. Even the most recent treatment, gamma knife, has the ability to stop the tumor but also to at anytime take all of my vision.

It shocks people to learn that not only am I recently blind in the right eye but that two years ago I was diagnosed with an inoperable brain tumor, two and a half inches into the middle of the brain. But you look so good, we would never have guessed - they all say and shake their heads.

The right eye still responds when I move it; looking different directions and at people and scenery, but drawing nothing in. It still looks perfectly green.

How do you live your life? I live mine with both eyes open – even if only one takes in the picture. I eat dessert whenever I want too. I take my 6-month-old puppy for a walk each day. I close my eyes at night knowing that I was blessed to really see what I saw that day – the flowers and herbs that I potted with my mom outside, the tv show my dad and I stayed up late to watch – the card a friend sent.

In the last two years, I’ve made adjustments to living. I’ve become an advocate for young adults living with cancer through an organization called Stupid Cancer and I have been their largest individual donor. I’ve raised over $65,000 for the National Brain Tumor Society and served on their NY Walk Event Board because I truly believe that research saves lives and every dollar makes a difference.

With this most recent loss of vision, I’ve adjusted to walking with my right side against subway walls so I can’t be startled. I’ve moved to corners of the table so that I can take everyone in. But I’ve never stopped living. This summer I plan to go skydiving and spend a week with family and friends at the beach. There is no guarantee that I won’t lose my vision before I have a chance to do those things.  And if I do, I’ll still feel the salt water on my skin and the rush of jumping and flying through the air.

Sometimes you don’t need your eyes to look at your blessings. How do you live your life? Do you see what I see?

it's ok,...just write.

I've been drafting this in my head all week and I'm trying now to remember what I wanted to say. I've also lost control of my left arm so I'm one handedly poking at the keyboard. I did buy one of those computer lap desks, so theres that, and that's great!!

It's going to be nap time very soon, but I've always been honest, so I see no reason, I should sugar coat the bad news - the tumor has been growing aggressively and we're out of traditional therapies, so thats bad. I am considering one off label drug that they are trying in a small number of bt (brain tumor) patients.

Pause. Typing one handed feels like playing a familiar instrument wrong.  I don't need a typist because my right hand gracefully sails across the keys - over familiar letters:l,k,j,h and into uncharted:f,d,e. I vainly try to use my left hand, but it's a slo, stumbling poke and slows me down. No left.

Resume. So, the dr told me about this chemo we could try. It's a serious regimen consisting of four rounds every three weeks, with daily shots for the first two weeks of each of the rounds. It also costs $1 million dollars, which is why we need insurance. Well, I guess I'm the million dollar baby because, insurance approved. Now I have to weigh the pros and cons.

Pro: could slow tumor; extend my life. I could help see if this drug will be useful in the future - add to the data.
Con: Might make me miserably sick, and not work, and then being sick would be for nothing- there are less than ten people in the world with bts trying this.

I think this is where things get hard. At some point, I will have to say enough. I'm done. But is that  now?
A lot will depend on my chest ct tomorrow. If the pneumonia isn't improved, I might not even get to decide. We would have to address that.

Recently, two people have commented on all the fun I'm having on FB and in pictures. First, happy to trade - really, dying and relying on your parents, is not "fun." I'm just doing what I would encourage you all to be doing: live. Just live every day to YOUR fullest. In fact, because both your hands work and you haven't fallen three times in two days due to balance issues, YOU should be having more fun. If you're not; you're doing it wrong. If you hate something in your life - change it.

I have two regrets: I wish I'd studied abroad, I wish I'd lived in the sorority house. If I could go back, I'd do most of it exactly the same. The reason I have fun now is my thoughtful friends. So to those that keep me smiling, thank you!!! Two weekends, ago, a bunch of my sisters came to visit. Its not four years its forever. It was amazing to see everyone.


Wow, stop whatever you're doing. Sit on your left hand. Now, Go. I'm pretty impressed I typed this all with just my right  hand… I'm bsically like an olympian at typing.

Whatever you're doing today. Take a minute for me now put you're heart in it and do it better.

with love and thanks,
Emily

Remember happiness and choose hope

When you're diagnosed with a disease that is inoperable and has no known cure - you know the odds are against you. But you "choose hope"as my mom would remind  me. I make a conscious choice  to put my faith in the Lord and "choose" hope. Then I work my but off to raise almost 100k for brain tumor research - I have to hope that while I might not benefit from the research, someone else will.

But you also know that a  day - you hope far away, will come… the "reality meeting" if you will. Some of your doctors aren't as optimistic and the talk sunk to realistic and caring with a touch of sadness.

I've had this meeting twice recently. I guess that means there are two ways to go. But I'm not ready. I'm ready for God, but I think he isn't done with me here. And for every day on earth, that he gives me, I'm going to find my purpose. If I can help you with yours, email me.

My primary basic tumor is growing aggressively and has taken my left peripheral vision because of the location in my brain. Second, the pneumonia is not under control; a new spot on the CT- making treating the brain tumor really challenging. That's why are going for re-radiation. But I'm going to get a PICC line so we can try with IV antibiotics. Don't know what a PICC is? Go back a few entries… I promise to tell you.

I have things to talk about but not tonight.

But first I want you to stop and take  deep berth. I've been fighting cancer for two years, nine months and I'm not finished! And second - I have a brain tumor - I'm not going to give into a lung infection. Remember, we fight!

Today is a great day - I had Shake Shack for lunch, it's Tate's 1st birthday, KD weekend in one more day, and I got my nails done - happiness.

From your friend living with pneumonia and a brain tumor, currently refusing to die from either,

Emily