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.

15 March 2015

Thursdays @ Sloan

My routine every 3 weeks ...   Working from my doctors office while I wait for treatment.  On one hand, it's nice to get out and about.   :) Nothing new to report!   Bloodwork all looks great.  Well...  My phosphorus always seems to drop low every few visits.   But just barely under the normal range.   

Nothing new to report.    Scans will be may 13th and May 14th will make the call if we finally take a break.  I think we are all in agreement that it's a good plan!  

Hope everyone had a fantastic weekend! It was rainy all day yesterday and wonder today :/ but that's ok.  I was fine with a nice weekend of taking it easy. 


12 March 2015

Kansas City Adventures

Last weekend I headed to KC to visit some good friends!  I must say, it's great to see all the improvements KC has done over the years!  It was also a fabulous weekend weather wise!   It was so nice to be able to sit outside for a meal and even for some corn hole in!

If you're ever in the KC area, the WWI museum is a nice stop!   Take a trip to the top of the tower for great views of downtown!  

A few photos from the weekend adventure!

Picked up these fun koozies from Team Cocktail!  Cuz we're awesome!   http://www.teamcocktail.com/collections/accessories/products/collapsible-koozie

The view from the tower.   

Hope everyone is having a great week!  Another round of Keytruda for me tomorrow!  


23 February 2015

Another round of good scans!

Last week I had another round of scans.  A brain MRI was added in since it had been almost 2 years since my last one!  (I've come along way from having to get them every 6 months!!!).  

Results continue to look good!   CT scan shows stable lymph nodes and nothing new!  Brain MRI was clear!   So we decided to keep on with the trial 12 more weeks!   If scans are stable again then we will make the decision to stop the trial.  It's scary, because we don't know what happens when people stop (or really how many doses someone needs to work). But I also think I'm ready for a break!

Hope everyone is having a great week!   We got a very short lived teaser of what spring might feel like!  And then back to the cold temps again!   


Is... Ignore any typos...  Updating from my iPhone. 

02 February 2015

2 years of Keytruda

Last Thursday I was in for my treatment.  It officially marks 2 years on the trial!   My doctor and I had a conversation about stopping the trial.   I have been on some sort of treatment since May 2012.   I am very thankful and greatful to have gotten access to this wonderful treatment!

When I signed up, originally it stated the trial would last for 2 years (possibly longer).   Then it was changed to an open ending - stating until growth, adverse side effects, or the patient wanted to stop.  It's a big decision!  And I've thought about it a lot.  I'm lucky that there are minimal side effects and I have the flexibility to make it in every 3 weeks for treatment, but at some point I feel I need to stop being the cancer patient, and start being the survivor.  And maybe get 3 months between reminders vs every 3 weeks.   

I know my participation in this trial is what has helped get it FDA approval!  And me staying in the trial helps others.  But I think my body is ready for a break!

So we made an agreement that if (when) my ct scan and brain MRI look good in a few weeks we will stop the treatment.  We don't really know how much our bodies need to be trained to fight.  And  tricky because the 'spots' that are left on Ct scan are in lymph nodes.  No easy way to find out if they are cancerous or dead tumor cells.  But what we do know is that they are small and haven't changed in 2 years!  (Boy how time flies...)

So stay tuned!  Hope everyone is staying warm!  (For those of us in the Midwest and northeast!). 


Another round of winter weather hitting us today - snow then to freezing rain and back to snow!