01 March 2016

5 years of stage 4 survival

5 years ago I was at Memorial Sloan Kettering having a lung biopsy to see is cancer (melanoma) had spread to my lungs.  I'd wake up several hours later (minus 2 small wedges of my left lung) to be told it was in fact cancer. 

Statistics would say I'd have a 10% chance of still being here today.  I was fortunate to get on a clinical trial of Merck's keytruda.  I've gone almost 3 years with stable results.  Nothing new or nothing growing! 

Protect the skin you're in!  Remember to see your dermatologist annually!  Wear your sunscreen & stay out of tanning beds!

25 January 2016

Jonas 2016 hits NYC

So many of you probably are well aware this little storm called Jonas that hit the east coast over the weekend.   Here in Jersey City we got almost 30" of snow!  This Midwest gal wasn't phased by it, but it has made a mess for folks trying to commute back to work Monday!  

Here are a few pictures of the snow!  Enjoy!

The day after - Sunday snow near Grove PATH station 

Saturday afternoon around 5pm on Newark Ave 

Might as well make the best of it, right?

1st round of shoveling done (I'd do 3 to 4
More rounds)

 Slowly cars are disappearing!

Ugh, weather, right?!?

Travel ban and covered sidewalks = walking in the street!

3 more months of boring...

3 months always goes so fast!  Last Monday I had my scans.  I had to have them late in the day so they moved them to the main hospital.  It's always so sad to be there and everyone is usually very sick.  

It was a rough week last week between scans and dealing with an awful ear/sinus infection (nothing worse than the feeling of vertigo!).   Luckily that has gotten better! I saw my doctor on Thursday afternoon.  That day marked 3 years from my 1st dose of Keytruda!  Scan results are the same!  Nothing new or growing!  We will take it!  Maybe one of these days we can advance to scans every 6 months!  But that might make me too nervous!  

29 December 2015

Merry Christmas!

Family time is always important.  Even though it was a balmy 70 degrees in NYC area, I packed up and headed to Minnesota for Christmas.  (ok, it's gotten a little cooler now in the NYC area).  Here is a quick recap of my quick trip home.  

Snuggles with my niece on Christmas morning.  She may look happy but she's really just annoyed because I put the camera in front of the movie...  (even though she did request the snuggles with her favorite aunt!)

It's not easy to get a 3 year to sit still for very long.

Activities of the day also includes building a small pillow fort.  no Dogs allowed!  I'm not sure if Claudia is annoyed or sad she's left out?

Trying to get Ms Winnie in on the photo fun and she's not really having it!  

We made time on Sunday to stop by the Minnesota Zoo.  It was a little chilly so we stuck with the inside things.  

Sunday's @ the Zoo. This is pretty much how I feel after running around with a 3 year old for a few days and then waiting an extra few hours @ MSP airport waiting for my flight to leave.  Lovely delays!

Hope everyone had a lovely holiday!


21 December 2015

Trying to make a House a Home

Some of you are aware that I finally made a move.  After 5 years of living in my apartment I decided to buy a small little place here in Jersey City.  Who knew.  5 years is the longest I've lived in 1 location since graduating high school.   When I moved to NJ I thought I'd stay here 3 years tops.  That was kind of my M.O.

But I found a great little house (expensive from Midwest standards).  I wasn't really exited about the idea of a condo.  So this works perfect!   

A few small pictures:

Bonus is that it wasn't until I closed and was there painting that I noticed I had views of One World Trade Center!  Kind of cool!  (It you look out the right window)

I have such a love hate with the area sometimes!  It's so darn expensive! But love the conveniences of everything!  There are so many great new places opening up around me which is fun to see (And try out).  

Like this small sampling of places I made a stop at last weekend:
1. Orale Mexican Kitchen: 341 Grove St.
2. Downtown Yogurt: 126 Newark Ave (rumor is they now deliver!)
3. South House Bar and Restaurant: 149 Newark Ave
4. Porta - Jersey City: 135 Newark Ave
5. Dullboy: 364 Grove - used to be old Park and Sixth Cafe.  Great little spot.  See if you can figure out why it's called Dullboy without asking :)
6. The Archer Bar: 176 Newark Ave.  This spot reminds me of home a little with deer head on the wall.  Not a very big place, but great cocktails.

So more to come as I continue to make this little place my home!  It's slowly coming together!  Trying to get it more organized before more folks want to see it lol!  Nothing like having 4-5 strangers and a video camera come in your house days after you've moved in and things are everywhere!  Looked like I was a hoarder haha!

Hope everyone has a lovely holiday!

09 December 2015

Jimmy Carter - Cancer Free?

There was lots of news that came out over the weekend when former President Jimmy Carter made the statement that he was cancer free!  This man is pretty un-stoppable.  He did have to get radiation to treat brain tumors, but then took the immunotheraphy Keytruda by Merck.  Many of you will remember (if you've been following along) that I did 2.5 years in a Phase 1 clinical trial for this drug. I recently stopped in May given that I've had great results and minimal side effects.  My friends have joked that in some small way, I may have had a part in helping safe Jimmy Carter's life!

Well we know it's the awesome folks researching and developing these drugs that are saving lives!  I am just the lab rat that helped proved it was working so others could get access to it!  While I think it's difficult to claim 'cancer-free', because Melanoma is so darn tricky, we do know that it sounds like doctors could find No Evidence of Disease (N.E.D.).  That's still a pretty great thing to hear when dealing with a Melanoma diagnosis (or any cancer diagnosis for that fact).

I got a call around 12;30 PM on Monday afternoon asking if I'd be interested in contributing to this piece.  I always walk this line between sharing too much? and helping spread awareness!  I think it's important for anyone going thru the melanoma journey right now to know these new drugs are out there for treatment.  I'm very fortunate that I am a patient at Sloan Kettering where so many of these drugs are tested.  I know there are lots of folks that end up seeing their local, home town oncologist who might not be familiar with all these advancements.

I was asked my thoughts on this as a 'cure'.  While I don't think we can quite call this the cure, we are heading in the right direction!

You can watch the short segment here.  It's amazing how these things get put together!


12 November 2015

Get Busy Living!

For those that may (or may not be keeping tabs), I did have scans a few weeks back.  Results look pretty much the same.  Actually the small lymph nodes I've had left have actually shrunk further since stopping Keytruda in May. From 88% reduction to a 91% reduction in size of the tumors since starting the clinical trial in January 2013.  So we continue to head in the right direction!  There was something minor noted they want to keep an eye on in the small intestine, but they didn't seem too concerned.  

Earlier this week I was traveling and catching up with some folks.  Its funny how recently I seem to get comments like - you look so good!  I'm not sure if that's because I looked pretty bad for awhile?  I'd like to think it has a little to do with my hair finally fully growing back in and a little less anxiety showing up in my face about this journey.  

Don't get me wrong!  There isn't a day that goes by when I don't think about melanoma.   It's hard not too when you have folks that started this journey with you fighting for their lives!  As many of you know my dear friend Julie has had a hard time lately.  She has an amazing support system and was finally able to head home again after WAY too many days and surgeries at Sloan!  So keep sending those prayers to Heaven @ Seven for her!!  They seem to be working! 

All of this makes me think about surviving vs living.   For the last 5 years I've just been trying to make sure I do everything I can to survive.  I finally feel like I've gotten to a place where I can say I'm living.  Ok...ok... Some may claim I've always lived life large (I mean I did have 3 trips to Mexico this year, 1 to Montraal, and a dozen other states...).  Even thru treatments it didn't really slow me down from traveling the world and staying fairly active.  But I think as long as kept moving, it meant maybe cancer wasn't wining?

Like I took an opportunity this week to watch the Veterans Day Parade here in NYC even though I was a little exhausted from an already busy week!

You see so many folks that struggle past a cancer diagnosis.  5 years ago I sat in a medical oncologist's office who didn't have any good news or hope to share.  But luckily, very shortly after being diagnosed the world of treating melanoma started to change!  It's pretty amazing!

So happy almost Friday folks! Don't forget to protect the skin you're in!