Wednesday, September 18, 2013

... an elephant, a tiger, and a shark - oh my!

Hello from 8 Hudson North! 

If you have not seen it, the update to the brings you up to speed medically. Basically, I'm still here, we're still running tests and we don't know much. They anticipate that I'll be here for at least a few more days. 

Tomorrow, we will hopefully do a biopsy on one of the nodules in my lungs. 

A day at the hospital seems so normal to me now. I can tell you backwards and forwards a "loose' plan of the day, but I can guarantee you that it won't go the way you try and plan it. I forget that many of my friends have never stayed in a hospital - some now maybe to give birth, but I'm talking an extended stay. Me, on the other hand, I've spent two birthdays and some 45+ days on the 8th floor. Today, during one of the rounds of doctors that came by, the neuro-attending on the floor said to a resident and a med student that were hanging back - "get up there and introduce yourself," she's famous here. I feel like that is either a really good thing, or indicative of spending to much time here. 

A day in the hospital doesn't just start early - theres not usually a true "night." Last night, I fell asleep around 9:30/10:00 with an alarm set for 11:30. I wanted to eat and drink before midnight when I needed to be "npo" or having no food or fluids in preparation for surgery. Since I just finished steroids, I am always hungry or thirsty so being npo is a huge challenge. 

After eating, I went back to sleep around 12:15.

At 1:30 am, a nurse came in and took blood work for labs. I went back to "sleep."

At 3 am, two nurses came in and hooked me up for a transfusion of platelets in anticipation of the biopsy. (They want to make sure they are high enough that I don't have uncontrollable bleeding).

More blood work at 4 am...

Around 5 am, my roommate's nurse came in and turned on the lights to help her with things (showering, etc).

AT 6 am, my roommate began watching her Spanish soaps. They're still on now.

Oh- and did I forget the nurses aids who take your vitals?? Yep, they were mixed in there too...

At 10:30, after not eating or drinking since midnight, I found out they couldn't fit me on the schedule for the biopsy today and they were taking me to  repeat the ultra sound from the day before.That very minute - transport was outside of my door. I had planned, had not eaten and here we were. Now, I'll have to do it all over tonight.

The hospital is actually one of the hardest places to get better. Your sleep is continually interrupted, everyone else is sick and you're just uncomfortable. 

It's not all bad though - I've lucked out and had great nurses, some visitors who brought treats and I've got an awesome view.

Plus, it's easy to find things to smile about.... for example - the infectious disease doctors came by. They have to see if anything viral or bacterial could be causing my problems. They ask a string of questions in order to put together all the information. One of the questions is - have you been to the midwest. Answer: yes, I was in Vegas. (Not as relevant - would matter more if I'd been hiking or camping. "Have you done any traveling?" Well, yes, Vegas... Nantucket - "oh! I touched a shark head in Nantucket..." 


Then Dad pipes in - and you held a tiger cub - that wasn't a cub - and rode an elephant....

The infectious disease doctors didn't know what to say. Especially when I affirmed there was shark blood though I tried very hard not to touch it (I DID feel it was necessary to feel the shark tooth). I then had to explain that I had also been in contact with camels, giraffes, llamas, goats, etc. 

I'm sure I'm not the everyday consult.

At the end of the day, most likely none of my travels or animal adventures are causing my fast heart rate and tightness in my chest. But it sure was fun to list as many things as I could....

Check out my new accessory - what's up fall 2014....



Monday, September 16, 2013

... 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.


Friday, September 13, 2013

...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.......


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.

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.

or leave a comment :-)