…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

…this is you, underwater.

Dad just posted a caring bridge update. To save time, I'm not going to repeat what it says, you can simply read that here.

I will say that this week was exceptionally hard, as Dad alluded too. Sitting in the ENT doctor's office as she was going through the images and explaining that the damage was permanent, I drifted away. Maybe if I didn't listen and just focused on the sound of the heater she would disappear; be wrong somehow. She was explaining in office vs OR options for temporary fixes (months!). I couldn't deal with this.

You know, people always complimented my voice - oddly, my nail ladies - at three different salons. I kind of wondered if it was like when someone says "you have a pretty face" but deep down, knew it was true. I had a great voice. In fact, when thinking of things I could do for a career if it turns out I am unable to return to my job, I had often thought of writ ing or being a voice over actress.

So here is this doctor telling me that in addition to everything else - the cancer, the spinal taps, the chemo, the MRIs, the months in the hospital, the chemo, the low platelets and easy bruising, the headaches and blindness, the fatigue, the weakness, the forgetfulness, ….. my vocal damage was permanent.

I'm not sure how to say it but somehow this was worse than everything else. This, took away more control, more voice.

I know that my speaking voice is not 100% gone. I know that speaking is not the only way to be an advocate or fight for young adults with cancer - myself and my peers. But, this was particularly hard news to weather.

In addition, tomorrow, as Dad mentioned on the bridge, they plan to hospitalize me to do this desensitization. I hate writing that word -it is annoying to spell out and to say. But, all I can say is I really hope it is only for one day. I tend to feel like hospitals suck you in and they find more wrong with you.

Finally, here are the shots from my underwater session! No voice or eyesight is necessary for these - I could feel the water and movement. Erena is truly a talented artist and I feel honored to have these photos. It was so exciting to get to cross these off my to-see list.

Wishing you all a great week…
Emily

[titleless]

I have no title for today because I have no grand proclamation. I'm still sick. It still sucks. 

Let's make a list. Bad things:

1. Doctors appointments

2. Waiting for shows to go on demand

3. Pneumonia

4. Cancer

5. Missing Amy's bday party

6. That my friends have to work and can only hang out weekends

7. I'm too tired to hang out 50% of the time

8.I had a nap-mare today

Good things:
1. Tates learning not to bark non-stop we hope
2. I can still see out of the left eye
3. Kara is coming Thursday
4. Lisa and Bill are getting us PF Changs this week
5. Robert is coming Saturday
6. I'm awake 50% of the time
7. I did some of my billing
8. I had lunch with friends last Thursday

Okay, honestly, the bad list was way easier to write. Sometimes it hard to remember there is so much good and this is going to get better. I will get better. I will figure out a way to fight through this even though it just feels pretty miserable. 

One very good thing happened since my last post - I was able to do underwater photos! I had thought I would be unable too but because the PICC came out- I did them! I am still waiting for the fabulous Erena to send me edited images but here is a preview of what we did: 

Getting all ready…

New friend!!

Given a chance, I'd so try this again

Deep end!!

Friends xoxo

Now that's a lens.

Special thanks and shout out to Ihadcancer.com for setting up this amazing experience and helping me check another item off my to-see list. It was especially amazing because the team from IHC wore team sweet emily shirts and Erena spent so much time with me. I loved meeting her and the experience was even better than expected!

I guess I had more to say after all. Upon reflection, a lot happened in two weeks. I also ended up at the ER on Halloween night (kidneys weren't functioning up to par and I was dehydrated according to my labs). It was so disappointing because I wanted to see the little trick or treaters. At least Tate got to dress up for a hot second as a hot dog… 

And with that, I'm off- -  thanks for reading

Love,

Emily

PS. Was watching TV the other night… does this look familiar? Yup, it's New York Pres - but edited for The Mindy Project!

... you didn't die bald!

When I first got sick, I published a list on my blog of concerns. One of them was what if my hair doesn't grow back and I died bald. It was a silly, but very real, concern. I'm pleased to report that my hair is shoulder length and not only did I not die bald but now I'm fighting, with medium length hair!

Fighting. That's the key word for this post. It feels like every day is a ton of work. Two week ago I had biopsies done on my right optic nerve, the tissue and the fat. Thus far, they confirmed what we already knew - tumor.

Team Sweet Emily recovers from eye surgery 

The doctors are working on a plan for how to treat this tumor because right now they are not comfortable doing chemo/etc with the pneumonia.

Speaking of pneumonia, who KNEW it was so much trouble! Not me. The antibiotics are reeking havoc on my body (making me sick to my stomach - can't keep anything down) and in combination with the eye pain, I've been hibernating in my room with the exception of doctors appointments. 

A big step this week - Tate is now sleeping in his crate downstairs. He used to get to sleep in my room, and then around 6 or 7 am, I'd pull him in bed for some snuggle time. Well, Mr. Demanding starting barking and whining progressively earlier and earlier. We were waking each other up and I wasn't sleeping. So, he's slept downstairs successfully the last two nights. 

Plus - we are redoing my 'new' room. (I'm moving down the hall). Mom is painting it - with one wall striped, and I bought a new bed spread! Don't need Tate getting on that (or my faux fur blanket)!

Finally, I'm so pleased to say that my friend from across the pond, Tom, sent me the most WONDERFUL bathrobe (which I had previously mentioned searching for). It has waffle on the outside and terry on the inside - it's SO warm. (I'm actually laying under it now).

It's interesting that week by week, priorities change but the goal is the same - control the pain, get better. It's just what I seem to be fighting is changing and increasing all the time. So for now, hopefully I can adjust to these antibiotics. They switched me off of the one that was causing a lot of issues and I am hopeful once it's out of my system I have no problem tolerating the new one.

 I saw the pain doctor yesterday and he was fantastic. Gave me a lot of suggestions and is really working to help control my nausea and changed my primary pain med (which is probably contirubting to me getting sick - the kidneys are't fully processing it). He and dad were actually texting earlier as I am still struggling today.

PS. S2K9 - I went shopping on GAP.com today for some comfy clothes! Definitely a great morning activity. Love to you all.

xoxo
Emily

PS. In exciting news because of the antibiotic change, my PICC line was taken out this week! Hopefully I won't need one anytime soon!

...does discharge equal cured?

I am SO happy to be home. But I still have pneumonia and I will for awhile. But right now - I'm just happy to recover at home. 

Thanks Reed family for decorating

home with Tate, snuggled up in a blanket from Rachel

Unless you've spent an extended amount of time in the hospital, then I can honestly tell you that you have no idea what it is like. 

Being in the hospital, you lose all sense of privacy and independence. This stay, I have 10 leads (stickers with wires) attached to my chest monitoring my heart. One was attached to a box that stayed in the bed (and I could unhook), and one I had to carry around with me (if I got up to go to the bathroom). This stay, I also had a pulse ox hooked to my finger or toe (which measures the oxygen in your blood). Plus, I had a picc line** attached to an IV pole which was then plugged into the wall.

So, I'm in the hospital and in pain - as in seriously spasms in my back, hooked up to a pain pump that administers constant medicine, plus I can push a button for extra. Every time I want to go to the bathroom, I have to call a nurse, get everything that can be unhooked, unhooked, and then roll myself out of bed. 

Luckily, my pain was under control after a few days - but due to the machinery I was hooked up to (to monitor my heart and oxygen, etc), I required assistance EVERY TIME I wanted to get up. Not to mention when I dropped my IPhone under the bed... can't reach that- had to buzz for Erin. It feels crippling. 

**A PICC line is a peripherally inserted central line - it's a small line inserted into my arm, tunneled into a larger vein by my heart. When getting high dose antibiotics or a lot of blood draws, this helps save my smaller veins (which are already pretty shot from chemo).

They diagnosed me with nocardia pneumonia, which is fairly rare (Columbia sees about two cases a year) - but not uncommon for someone like myself who is immunosuppressed. We've been told that this type of pneumonia can take a long time to get over - I could be on antibiotics for months to a year. One of the main issues is right now I am on three antibiotics (two are IV and one is by mouth). 

a fridge on drugs

You must be thinking - you're doing IV antibiotics at home? Well that's an advantage of the PICC - it can stay in and open for a longer time than a normal IV. We have a visiting nurse who comes once a week to check the line. Mom learned how to administer the drugs and we got set up on a schedule which is four times a day (and does unfortunately include one round at 2 am and one at 7 - but it's the best we can do for now). Eventually, a lab in CO that is working on my case, will figure out the exact amount of which of the antibiotics (or exact combination) will fight the nocardia the quickest. For now, we blast my body with all of them. When we know the exact amount, the hope is I can take them all by mouth.

IV drugs in the family room

To answer some questions I've been getting:

• It feels great to be home. 
• I'm still sick - it still hurts to do lots of normal things, like bend down and climb stairs
• I'm going to be sick with pneumonia for a long time, potentially a very long time (months-year)
• The lines coming out of my arm are not the same as the port I had, but are similar

Ultimately though, it's pneumonia and we'll beat it. And we'll figure how how to beat it while fighting the cancer - something I am sure my team is hard at work on. 

And I've gotta say, if you're stuck in the hospital - Columbia is the place to be. I've got all my friends (cough, cough, nurses there) who take care of me, bring me special food, give me back massages and are members of the 'hair tie' club. 

And if you've gotta be home, well nothing is better than company like this...

my little man