[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!

...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

... Today hasn't gone as planned.

Happy Monday! 

On Mondays, I have doctor appointments at Columbia. Usually, mom and I leave around 7, get bagels (and diet coke (no coffee drinkers here!) and drive in. We arrive by 9, and head over to get my blood drawn. I found what I consider my "secret" lab- it's on the transplant floor but still in the cancer pavilion so the blood work gets done quickly. After I see my girl, we snake our way through the cancer center, the hospital, all the way to the neuroinstitute. There, I meet with one of my nurse practitioners and we develop a plan for the rest of the day. It could involve chemotherapy but more recently, platelets.

Today, things went a little differently. I've been having some chest pain and based on my heart rate and some other symptoms, my nurse practitioner and doctor agreed that I needed to go to the ER and be evaluated for a pulmonary embolism and/or a blood clot. I'm very lucky to have a medical team that cares so much- my np actually brought me over and made sure I was taken right back (which at the Columbia ER is a miracle in and of itself).

However, emergency rooms are slow. It's 2:15 and I just got an IV a few minutes ago. We're waiting for a cat scan and chest X-ray. They will possibly also do no-lateral ultrasounds. AND because my voice has been hoarse and iffy for weeks, I get to see an ENT now too.

I cannot count the number of days that just don't go as I expect. Last week, I had a particularly rough day. I had to give up my drivers license in exchange for an id). Not only is that frustrating, but my face is swollen from steroids and who wants there picture memorialized like that? So I get my act together and shower and get dressed up (which is a lot of effort some days) and we get all the way to the DMV... nd it starts pouring. Mom pulls the car up, comes around with the umbrella, and gets me to the door. Inside, stands a police officer with zero personality. He doesn't say anything until, I approach. Apparently their computers are down. He says he doesn't know when they'll be back up.

  Old license

At lunch (I mean I AM all dressed up, we had to do something!), we find out from the hostess that ALL the hi computers and DMV computers are down. You just can't even get upset.

All dressed up with no new id

So today, it's not going my way, but its not over yet. I was hoping for some chemo and to be able to pick something up at the mall on the way home. Now, I'm hoping I don't have another challenge to face.

But, either way, well get through it.

........(Nearly 10+ hours later).......

So....  Now I've been admitted to the hospital. Things definitely aren't going as planned. For those of you that subscribe to the bridge, you've already read dad's update. But, if not...

The CT scan revealed nodules and a mass in my right and left lung. There are three total. These need to be investigated because as of right now we don't know if they are malignant. There's also a potential heart issue so we've added some really (un?)cool wires to my chest for someone to monitor.

In the ER, I also saw the ENT who did a scope of my vocal cords. They feel that most likely we can resolve my hoarseness as I come off steroids

And now, I'm back on 8 Hudson north and well see what tomorrow brings.

I went to fashion week and I didn't see any wires for spring 2014.

Love 

Emily

...oooo... lets talk about chemotherapy.

I've been wanting to write a post for over three weeks called "my body on steroids" but just haven't had the time. Between Vegas, Nantucket, Mercedes Benz Fashion week, four platelet transfusions, one shot of Neulasta, icing my legs and back, and STILL no Avastin, I just haven't gotten a chance to put together anything. And now, based on a big mess of transfusions, I think we need to back up and talk about chemotherapy. You should know I hear Celine Dion in my head singing "ooo let's talk about.. chemo" (instead of love).

First, let's get a basic understanding of chemotherapy. There are many, many different types of chemotherapy drugs and it depends on what type of cancer you have. Cancer is a blanket term - every cancer is different EVEN if they are the same type. Therefore, when we talk about a "cure" for cancer - we are often missing the point - we need A LOT of cures and a lot of research.

Brain tumors specifically have extra challenges. You might remember from high school the "blood brain barrier" which separates the brain from the rest of the bodies circulatory system. Some drugs can cross the BBB but many, if not most cannot. This increases the challenge of treating brain tumors - and then add on to that that there are 120 DIFFERENT types of known brain tumors alone.

Now that we know they are hard to treat and diagnose, you might be asking - what are the options? There are not many. First, most brain tumor patients historically did not live long enough to test/rework drug combinations. Second, may traditional chemotherapies do not cross the BBB. But, in the last decade, advances have been made.

For brain tumors we can focus on two main types: cytostatic and cytotoxic.

• Cytostatic: prevent cell production
• Cytotoxic: start the process of cell death

Currently, my Avastin has shown to do some of both - but really it is less of a traditional "chemo" and the doctors are using it to cut off blood supply to the tumor. However, my "newer" (which is actually an older chemo), Carmustine or BCNU, is cytotoxic. My older chemo, Temodar, which I was on for a collective year and a half was cytostatic. I could do it from home and no injections were required except weekly blood tests to monitor my platelets (which only once dipped to 45).

BCNU compared to Temodar is night and day. Because I had been on Temodor for so long, I was experiencing some side effects but all were generally mild and easily controlled. BCNU is a hard drug. It is made from mustard gas and is given through an IV (or what I fondly refer to as "chair chemo").

Carmustine is usually given every 6-8 weeks depending on your blood work. In the beginning, everything is gravy and then you hit the "nadir" or weeks 4-5 where your blood work numbers just nose dive. That's where I've been hanging out. I've had four platelet transfusions and have gotten as low as 21 (remember we learned that that's really 21,000 but doctor slang). Then we'll transfuse, I'll go up to 60-ish and then back down. It's been a roller coaster of daily blood drawing and transfusing.

AND THEN came the new thing: my neutrophil count fell. What's a neutrophil? It's the part of your blood which fights infection. Great, with all my traveling, I was immunocompromised. The neutrofils are measured by the ANC (Absolute Neutrophil Count) and mine were too low. The doctors decided to give me a shot of Neulasta which boosts your immunity for two weeks. It can also cause crazy bone pain and muscle aches because it basically tells your bone marrow to grow and re-produce.

So that's where we are now. I haven't been able to have Avastin because of all the trouble BCNU is putting me through. Avastin comes with it's own risk - bleeding, blood clots, stroke, so they have to be careful about adding that on when my numbers are low.

And now that you've read about the fact that this is REALLY hard and I sit on the floor to get dressed some days because I don't have the energy to stand, or mom has to get a wheel chair for me to leave the hospital because we walked back and forth between neurology and treatment too many times for different things, I can tell you about the fun stuff.......

I GOT TO MEET CELINE DION!

My aunt (my mom's college roommate, who has just always been Aunt Cindy to me), took mom and I on a trip to Las Vegas. I'd been to Las Vegas once with Stupid Cancer - but let me tell you, this was a whole different experience.

When we arrived, I had to go have blood drawn. Total bummer, right? Well, it prompted me to see if we could check in early and the kind concierge

upgraded our room! I have never stayed in such luxury. We could watch TV in the tv that was in the bathroom mirror. Caesars was beautiful and once we got the blood work done, I had to rest (in literally my palace of a room and do a little icing of my joints). See not all fun and playtime:

I also spent 90% of the time in the casino being pushed in a wheel chair for two reasons - one if anyone bumps into me - or even hugs me to hard, I bruise. Two, it takes a lot of energy to get dressed and walk around and do things - so if you want to have more fun, you've gotta skip some of the walking.

currently in the market for the perfect waffle robe

Get Busy Living - right Stupid Cancer?

So at this point, I have an awesome room, and I know we're going to dinner and seeing Celine. We spend the day relaxing by the pool and I get to have lunch with a good friend Seth who happens to be in Vegas for a bachelor party. Seth has known me through the whole experience and picked a restaurant in the casino and walked me to and from lunch. He's been a great friend throughout the years - from the first day he rolled into class late and asked if he could borrow a pen. 

But, now it's time for the main event. We go to dinner and my aunt says - we've got to pick up the tickets and we might  be able to upgrade our seats. So we're hanging out by the ticket box after dinner... seeing lots of trash like....

Classic Vegas

and I've got a fancy to-go cup because mom and Aunt Cindy rushed me...

my fancy "to go" cup

...when I finally start to get suspicious. And before I know it, we're back stage, waiting to meet Celine... Dion!

I am so happy to share with you the following story which I transcribed into my phone so that I would not forget a minute of it.

Celine walks forward to greet me, a guard says "this is Emily" and she immediately takes me by both hands and says "How do you feel today?" I am 100% in shock at this point and I said, "Today I am good, thank you for asking." Mom tells her I'm losing vision (which she already knew) and she took me by the shoulders and squared her body to mine, and said "Do you see me? - I want to tell you that I have met many many people who have problems and cannot see but they see so much more than everyone else because they see from their insides and I truly believe that even if you lose all of your vision you will always see from your heart." At this point, mom and Aunt Cindy are crying and I'm like - keep it together for the pictures ladies!x

Celine was so warm and kind and had the softest skin. She did not take her hand off me at any point. We had been told she only had time to do one group shot. Aunt Cindy asked if she would do one with just me and she said "but of course- I want one with Emily!" In that picture she put her hand on my heart (which later made me exclaim - "Celine touched my boobie!"

And if all that wasn't enough, Stevie Wonder played a duet "Overjoyed" with her (which will be on her new CD available in November).

I can't tell you how many times I cried during that concert - early on when I took Mom's hand as she sang "you were my strength when I was weak, you were my voice when I couldn't speak, you were my eyes when I couldn't see - you saw the best there was in me." Or the next song, when she sang, "it's all coming back, all coming back to me now" - and I can see Kim and Kara and I driving home from Boston in the dark screaming about "flashes of gold."

I was convinced the rest of the weekend would be a let down - how could the high continue? But, I had purchased tickets to see "O" at the Bellagio and it was AMAZING. Truly something "TO SEE" and experience. The real highlight of the night was the treatment we received at the Bellagio. I had spoken to one of the concierge, Anggie, when I was trying to buy tickets. We ended up chatting and being around the same age, I gave her my website. She followed up to make sure we had dinner reservations and that I had found tickets that would work.

Note: Here's something ya'll probably didn't think about. Ticket selection is HUGE for me. If I'm blind in the right eye, and then the upper left, left eye - where do I SEE the most. How can I view the stage best. If you've gone to dinner with me, you might notice me switch chairs with someone - if you're on my right, you're out of my field of vision. If there are three of us - I don't want to be in the middle at a table - I want one across from me and one fo my left. Just little things that people don't realize I have to think about ALL the time really add up.

Well, I had mentioned I wanted to eat outside at Yellowtail to see the fountains from that view (seating is very limited). I had told my mom and aunt that this was my treat - I wanted to take them to dinner for all they had done. We were treated like friends of the staff from the moment we walked in - our waiter, Guy, had the same name as my neurosurgeon. He made great suggestions and I already had some ideas of what I wanted. My Aunt, knowing I was treating, literally ordered "Yellowtail" wine (the least expensive on the menu). At the end, the chef came out and said that they had read my website and heard my story and the executive chef had taken care of the meal. It was so kind but what really touched me was that everyone wanted to take a picture. It was humbling to feel like you had made someone think about their day in a new way.

OH and before I put in pictures and forget - there was one roll that literally had poprocks in it! It was meant to stimulate all five senses - so you could see the rocks but also feel and hear them, etc. How COOL!

view from dinner

my aunt cindy and me

the coolest roll ever made with candy

Aunt Cindy, mom and me

Chef Michael

just one more...

I think that's enough for one day....

I hope you learned something and enjoyed the pics! I am having a great time checking things off the "to-see" list and have some awesome things coming up.

ANNOUNCEMENTS:
If you are in the NJ or NY area and would like to join us on Sept. 28th to go to the Statue of Liberty, I will have more details for you soon!

If you can make it to Blacksburg, VA on October 5th, I will be there and would LOVE to see you! Go Hokies!

If you could please pray for my platelets and blood work, my intermittent bone/muscle pain and my vision (which continues to worsen), I would be grateful. Pray that we are on the upswing from the nadir and that I can have Avastin soon.

Love,
Emily
emilycmorrison@gmail.com
or leave a comment :-)

...each day is a gift from God.

Well, sorry about the last mopey post! I did need a kick in the pants.

I'm home in NJ now and I realized that all of these emotions and hard times have less to do with my new apartment, and moving back to NYC and more to do with being scared and not knowing what is going to happen next.

But, for the next 7 days I'm off to the lake with the family for some reading and relaxing. Can't get too much sun because my scalp is INCREDIBLY itchy. Anyone else experience that post radiation? I don't remember it being so bad during radiation but now... my oh my.

Keep calm & carry on
Emily

...you need a kick in the pants.

So this is way harder than I expected. I guess several big life changes at once are a bad idea. I finished treatment, I left my parents house after 5 months and moved into a new apartment in New York... yesterday. While I am super excited about my new location, my roommates, etc... it's just so much harder than I expected.

I feel alone. I feel like I'm going to get sicker eventually, so why try. I feel like I just want to go back to my parents couch and sit with them and watch tv. I tried to watch the shows we normally watch and couldn't even get into them. I tried to play words with friends (something I have done every day since being in the hospital) and I didn't have any words to play. I can't figure out my purpose and why this is all happening to me, and it's just so terrifying and makes me feel so alone.

I'm going to dinner at a very dear friends house tonight and I suppose that will be good. I just want to give up but that is not in my nature at all. I just didn't expect to have this much trouble.

I'm asking everyone - please pray for not only my health, but for my spirit. I know that I will get through this with a smile, just right now it feels extremely hard and isolating.

... just hang in there.

 Radiation days down: 

About halfway there... and my hair started to fall out this week. Sorry that it is all I blog about but it's a huge deal to me. I just want it to fall out where its going to and just get it over with. And yes, those are my hospital bands that I get each day... after we drive over an hour to get there!

My dad and I went swimming the other day and there was a frog. He was not a fan, but I was. I was hoping he was prince charming...

Having cancer is a weird experience. On one hand I want to go back to my life but I know I never really will. My cancer isn't the kind that goes into "remission" - it's just stable, or unstable, but it's always there. It's inoperable, and unfortunately (trivia) the brain does not have cells to come clean up dead cells like the rest of your body. Pretty crazy, I know. So even if the radiation kills the cells, the shape of the tumor that is there will always be there. We'll just have to compare MRIs for changes. But anyway, it's pretty nuts. I'll always have cancer. 

Keep calm & carry on --

Listening to: My Body by Young and the Giant

... you have a new hobby, cancer.

I was telling my dad how a few posts ago I thought I needed a new hobby. He pointed out that now I have one, cancer. Specifically, cancer and my Ipad. I troll other blogs and forums and sites like it's my job. I make and attend Drs appointments like my life depended on it. Oh wait, both of these statements are true.

I'm exploring raw food. I say that with a complete grain of salt (figuratively)... I just don't have the dedication to be Kris Carr. However, I am mastering the green drink and I am the proud owner of a new VitaMix. I mean, my parents are the proud new owners of a VitaMix... I am just leasing it. Tonight I tried to make banana ice cream but was less than impressed. My mom did make avocado salad dressing that was delicious for our salads at lunch.

Sometimes I make inappropriate cancer jokes or just say things that might make people question if I have a brain tumor (ha, I do). Exhibit a, I was at the nail salon with Katie. She asked what the aerosol that you spray on your nails to help them dry does... as she finds it questionable. I said, "It used to worry me too, but I figure I already have cancer..." - the lady across from me was aghast. Exhibit b, at my first radiation appointment the resident said "hypothetically, if I was treating you for prostate cancer..." I interrupted him and said "oh hunny, if you were treating me for prostate cancer, we'd have other problems..." Yes, I called the resident hunny. He's never really spoken to me at length since.

Well, its 15 minutes away from chemo time. It's pretty amazing to take chemo at home and not have to deal with a port or ivs and a chair. I do recognize how lucky I am. Temodar so far has not been unbearable, however, it did give me awful stomach cramps on day 2. Like, laying in the back of the car on the radiation, moaning cramps. After three calls to the chemo nurses (so wonderful!), an antacid did the trick. I've just been taking it every morning and that seems to help. I haven't heard or found many other people having this side effect but don't think its out of the realm of possibilities.

I am tired tonight. Luckily, I will sleep as soon as I take the chemo pill and miss any potential effects.

Keep calm and carry on ~ Emily