19 May 2015

Final dose of Keytruda!

Ok guys - a little bit of a long post! I have been MIA a lot lately! Busy work/travel schedule! But an update! I had my scans last week. I have been on the Merck Keytruda trial since Jan 2013. Prior to that I did 4 months of Zelboraf and 4 doses of Yervoy!

My scans continue to show nothing new or growing! So it was decided that last week was my last Keytruda dose! (I think that made #41?) While they can't prove I had a total complete response (I have some unchanged slightly swollen lymph nodes that they think have dead disease but are too hard to biopsy and too small to check with a PET scan.  

Those that know me, know I LOVE to take pictures! I was testing out a new app and put this collage together to show how thru it all, I haven't let melanoma define me or slow me down! Just wanted to share as a little hope and encouragement! A sampling of some of the travel I have done in the last few years!

** what I shared on Instagram - I always forget I downloaded the Instagram layout app! A summary of the almost 5 year journey with melanoma! And how it hasn't really stopped me! Upper left hand picture is me in Australia in September 2010. That was when the mole on my back started to grow like crazy! It was there one night in the outback near Uluru that it started to bleed! I had it removed immediately after returning to the states! Other pictures are a sampling of trips since then with trips to Thailand (twice), Scotland/London for summer 2012 Olympics! Yosemite, Russia (winter 2014 Olympics) GrandCanyon Mexico!


18 May 2015

California dream in'

I'm So the last few weeks have been pretty busy!   Ok, more than my normal running around :).   I think 3 of the last 4 weeks I have been somewhere other than jersey! (You all saw one of my posts about Acapulco!).  Beginning of the month I had to head to Cali for a week trip.  So I figured id take advantage of being in the area by going in late Friday night and seeing some good friends!  Thanks Marie and Max (and pipes and knuckles!) for the hospitality!  Was so great catching up with you all!

Saturday apparently was free comic book day!  Say what?!? We started out with brunch at a great little place called The Grub?   Then it was off to a little touristy type activities!  With a stop at the Hollywood sign!  

Then it was back to check out the local comic store 

After that we relaxed for a bit before heading back down to sunset blvd and to see the new avengers movie at the el capital theytre. 

Was a great weekend!  Sunday max and Marie and to work so I headed up the coast to hike point dume area just north of Malibu.  I joked with a friend that as k was cruising up the pacific coast highway I thought to myself, I lead a pretty awesome life!  :). Enjoy some pictures from the hike!

Cheers Erin 

26 April 2015

Light at end of Tunnel?

Jan 8, 2013 I signed papers to be enrolled in Mercks anti-pd1 trial (pending approval after additional testing).   

When signing the original paperwork it stated it was a 2 year trial...  Quickly the paperwork was changed to be open ended.   I remember having a conversation with some folks from Merck about if side effects were minimal, why not just keep going?   Then I talked about the every 3 week appointment and it basically takes all day.  And besides, when do I get to feel some sort of accomplishment in this battle?   Every 3 weeks I get a very clear reminder that I'm a cancer patient.   

So the plan is that after scans on May 13th, if all has stayed the same we will stop the trial.   It's complicated with the 'spots' I have left to tell if there is any active cancer, but nothing has changed or shown up since in a little over 2 years. So that has to be a pretty good indication!  

Stay tuned!  Results on the 14th!   


Last night in Mexico...

Ever since being diagnosed with Melanoma, I always get a little nervous about sun vacations!   But then I'm reminded that I shouldn't be afraid to get out and live my life!  So last week I met 6 great friends for a week in Acapulco!   

(Sunrise @ EWR)

We stayed @ the Fiesta Americana (
http://www.fiestamericana.com/en/home).  It was a great hotel and the staff was amazing and so friendly!  Our days were spent hanging out pool side (in the shade and covered up of course...) and a night or two venturing down the strip.   We also did an afternoon boat tour of the bay!  Great times with great friends!

Enjoy a few pictures!
A view from the hotel!  This will do...
Sunset dinner with the team!
The MSOE crew!  Here's to another 20 years of adventures!
Boat tour!  These darn birds love chips!

04 April 2015

bloodwork, nurse/doc visit, tx, repeat!

It's funny how when I first started this trial it was easy to keep track of what dose I was on!  Now I have no idea lol!  Thursday was like most others @ Sloan!   Bloodwork, quick research nurse/doctor visit, then sit for a few hours while I wait for the pharmacy to mix the good stuff!   

All hooked up and ready to go!   Just a quick 30 minute drip!   

Earlier this week PBS did a 3 part series on the biology of cancer - The Emperor of all Maldives.  (http://video.pbs.org/program/story-cancer-emperor-all-maladies/)

I highly recommend checking it out.  The 3rd part focused a lot on melanoma and how immunotherapy drugs are helping fight it!  We know there is no cure, but we get closer every day to it at least being managed like a treatable disease vs a death sentence.  I have lots of other thoughts/comments on the series, but will save that for another day :) 

Hope everyone has a safe and wonderful Easter weekend!

(Ps - please ignore any mistakes - updating from my iPhone!)

01 April 2015

Milwaukee weekends

It's always great catching up with friends!  I think I'll always think of Milwaukee as my 2nd home!   I had to be in Chicago for work and figured it was a great reason to make it up to visit friends!  Helped that it was also time for the annual Riverwest pub crawl!  This was put on by Kiwanis Club of Metro MKE.  So it's always for a good cause!  In my early 20's this would be #challengeaccepted!  20 bars in 8 hours!  But now it's more about catching up with some good friends (and donating to a good cause).

It's always great to spend some time with fabulous friends!  

What did I want for dinner?  Well I'm catholic, and it's Lent - so a midwest fish fry was in order for Friday night!

Another Wisconsin thing you can't find on the East Coast - Frozen Custard!  A Kopps stop was needed even though I was plenty full from my fish fry!

Fashion Fights Cancer!

Recently I was introduced to a group called Fashion Fight Cancer.  I'm not exactly sure how they came across my contact info, but was so glad they reached out.  You can check out some of their other events or upcoming ones HERE!

There was a workshop starting a few weeks ago with Lydell NYC.  I think in my mind when they said they would be hosting a bracelet workshop I pictured a pattern already set out for us with a bunch of beads we could pick.  You know, follow the instructions, put your favorite colors and done! I didn't realize I'd have to really get creative!  I love the idea of bringing together folks, with a common bond of cancer, but never really talking about it.  Just doing something distracting and interesting.

This workshop is a 4 or 5 part one.  The first one was to take a look at the collections Lydell NYC had and get some inspiration.  I can't thank them enough for opening up their place to host this event. Everyone was so incredibly nice and welcoming!  Our second workshop was to put our design caps on and think about a charm that means something to us.  Folks that know me, know that I'm not much of a fashionista.  I'm a simple person.  So we'll see how this turns out!  I won't get give any spoilers until it's done!  We'll head back in a few weeks again to start bringing our designs to life!

You can see below on what FFC does.  And if you're a fellow cancer patient or survivor, check out their upcoming events!


About them:

our work

Research on cancer shows that health and wellness is an important aspect of battling and surviving cancer which includes emotional support and finding hope and inspiration. FFC, in collaboration with the fashion community, is an important partner in providing that much-needed emotional support and provides ways to regain hope and inspiration. FFC’s therapeutic workshops and seminars are offered free to cancer patients and survivors. These workshops and seminars use fashion- and design-related disciplines in a variety of activities that act as soothing therapy. Internationally-acclaimed fashion designers donate their time, studio space, and work with participants to create unique, one-of-a-kind designer products.
Research on the kind of creative therapies that FFC provides not only shows the connection to improved health outcomes, reduction of pain, and such physiological responses as reduction of blood pressure, more restful sleep, and boosting the immune system (Stuckey & Nobel, 2010), but helps cancer patients to express themselves through fashion and design creations and, in the process, allows them to turn their experiences into expressions, fears into fashion, and renewed hope into healing.