Saturday, March 30, 2013

In the absence of color...COLOR me RAD!!!

RAD Freddie.  Ready to support Brent and Roo as they run in the 5K Color Me Rad event today in Chattanooga to raise money for the Make-a-Wish Foundation.
Sooooo RAD!!!
The MOST RAD!!!!!
RAD Rosie!!!!
Chill'in ( was a bit colder than we might have liked!!!) before the race.
Happy RAD!
RAD ready RACERS!  Joined by one of Rosie's sweet friends from Cross Country days.
In the starting line-up.
Waiting on their wave.
There's my girls!!!!
B heading to the finish...with time to stop for pics!!!
A Rosie escort to the finish!
MY RAD winners!!!!
The after-party!
Silly peeps!!!
You want color?
We got color!!!
And we're willing to share!!!!  Bet you thought girls with vitiligo had lost their color!!!!  Be RAD! - c

Friday, March 29, 2013

Vitiligo...set # 2...Looking for Melanoma Answers!!

I last posted pictures of my vitiligo, September 18, 2011.  Since then, it has progressed a great deal.  Originally, it was only on my right hand, progressed to blotches on both my thighs, and is now pretty much every where anatomically speaking though still blotchy.
Thigh.  Still lumpy from the granulomas that developed after all the peptide vaccine injections...but softer, and less distinct than they were, which is hopeful.
Other thigh.
Progression to lower legs.
Forearm...slightly different lighting...sorry.

 For those of you new to this, vitiligo occurs with the destruction of melanocytes.  (The cells that give our skin pigment.)  It can occur spontaneously in some people. For example, 0.4% of Caucasians in the United States develop vitiligo.  The appearance of vitiligo is a positive sign in melanoma patients because it indicates an immune response to normal melanocytes as well as melanoma cells.  In some groups of melanoma patients given IL2, as many as 20% of the patients have developed vitiligo. Vitiligo in all melanoma patients is associated with better outcomes, with a rough doubling of 10 year survival in Stage IV patients. While some data has been collected and reported in various melanoma trials regarding the number of patients who develop vitiligo, it has not been studied significantly. However, Mary Jo Turk, PhD, at Dartmouth, has been investigating the relationship between the development of vitiligo, melanoma, and survival in mice.  (New Perspectives on the Role of Vitiligo in Immune Responses to Melanoma.  Oncotarget.  2011, September;2 (9):684-694.)  We have been lucky enough to correspond with her and are working to share some of the data/blood sample information that has been collected on me in the course of my trial with her, in hopes of furthering her work.  If vitiligo aids survival in melanoma patients, we must figure out how to create that process when we need to!!!!  - c

Friday, March 22, 2013

Me and Shaun T...cardio recovery...DONE!

Have to admit...cardio recovery is mostly squats, yoga, stretches and deep breathing...but, given the state of my breathing just now...YAY!!!  For me!!!  B came in and gave me a bad look...oh well.  You shouldn't be surprised by much at this point, Buddy!!! Wonder if Jeffery could even keep up....  hmmm..... - breathe deep, seek peace - c

When you can be lost....

Bright and early in the wee hours of Saturday am, I was awakened by significant mouth pain. The first few days this week felt as though I had had major dental work done such that when I accidentally brushed my own cheek it felt almost swollen and painful.  Even my gums were sore.  You know how it feels after you accidentally hit your gum while you are brushing your teeth and it is sore for days?  Well....maybe you peeps aren't as spastic as I am...but, was like that...everywhere!  I had actual lesions on the underside of my tongue while all else was raw, red and decidedly pissed off.  Good times!!!  Thankfully, it improved gradually each day and was responsive to ibuprofen which I took every eight hours. Today it is almost back to normal.  Anti-Pd1 is some crazy crap.

Shoulders, elbows and wrists have been sore.  But, not so much with my ankles and knees.

And, then...on Tuesday....let the wheezing begin!!!  My nurses have been quite alarmed...funny how nobody ever gets used to it...wanting me to get Decadron shots (can't be done!!!) and/or go lay down.  But...worked anyway.  Did decline an extra day on Thurs....and a good thing, I was VERY tired.  Probably due, in part, to little sleep because of wheeze and cough.  But, Bentie pulled out the big guns...nebulized albuterol, atrovent, and a higher dose of my symbicort....instead of my inhalers, and I am beginning to feel better.

Over 2 years of treatments and side effects and scans can make you feel as though you have lost yourself indeed.  On the other hand, I feel as though I have lost my right to complain, as there are others in much worse positions....who would give anything to be in mine. Love - c

There and back elve's tale....

It's been a less than fun week...but to back up a step.... 

It was Tampa time again last week, so Brent and I took off from Atlanta as usual on Thurs.  It was one of the prettiest days we had ever had in Tampa-town (FYI....Florida is NOT always the land of sunshine!!!) so we drove out to St. Pete for a pretty, if cold and windy, walk on the beach.  It was a trip in that I was driving a Granny Car!!!  (Sorry, Kay!!!) But, per the continually nonsensical and fluid line-up and pricing that is Alamo, the "premium" ride was cheaper than the "economy" or "compact" that we usually go for.  So...we were tooling around in a gigantor, floaty, Chrysler 300!!!!  Brent thought my parking "skills" were hysterical and of a rather dubious nature.....but, hey!!! I've spent years driving Mini Coopers and Jukes...this was out of my size range!!!  But, our walk was fun and we returned to Tampa proper to eat at Pho Quyen on Hillsborough.  It lived up to its reputation on all the dining rating blogs!  We had delicious spring rolls, salt and pepper fried squid, and Vietnamese bun with grilled shrimp (sort of a salad with shoots, basil, and mint alongside warm rice noodles topped with the grilled shrimp and a side of flavored fish sauce)...all really delicious.  Plus, Brent tried Vietnamese coffee with condensed milk.  A thick glass containing about 1/2 inch of condensed milk in the bottom has strong coffee brewed directly into it. You then stir the mixture and pour over ice.  He was amazed that I already knew all about it.  Hey...I know stuff!  He loved surprise, the boy has a thing for Eagle Brand!  Anyhow, it was fun and yummy and I highly recommend a stop if you're in the area.  Our usual La Quinta (on Fowler) was booked, with Spring Breakers I suppose, so we stayed in our original La Quinta (off Fletcher), that subsequently changed to a Holiday Inn Express.  Have to say....much better deal at La Quinta...since over the past 2 years our La Quinta has been kept up with new paint and such periodically and the now Holiday Inn was just as we had left it.  Anyhow....up early Friday morning for fun at Moffitt.

Don't know if my veins are sick of their role in my life (and to think I was never to have pokes, prods, BP's, IV's, etc. in either of my arms due to my bilateral lymphadenectomies!!!!) or if it has just been a run of bad luck, but IV starts have not been easy this go round with multiple pokes and digging required for the IV for scans last week and the same occurred at the CRU as well.  These things happen.  At any rate, IV finally started, blood drawn and back over to see Dr. Weber.  As usual, I was a nonevent...with no problematic findings and clear scans.  Did note continued increase in vitiligo. 

In my NED groupN = 31. 7 patients progressed while in the trial. Two patients have passed.  One is probably going to pass soon. Of the 4 remaining that progressed, 2 are subsequently NED again (I cannot tell you if this is with additional treatment or without.  I know from past conversations one patient had become NED after initially progressing with NO treatment and I know that other patients had been "doing well" with subsequent treatment with ipi....however, I do not know what was done in these two cases in particular.), of the original 31 patients, 26 remain NED.  That demonstrates a clinical benefit of 83%.  Dr. Weber admitted that is was "much better" than he had ever thought we would do.  He said he was meeting with the folks at BMS to try to set up a trial with anti-PD1 as a real adjuvant treatment for melanoma patients with resected disease today...given these results.  Additionally, a proposal for publication of at least some of the data from my trial has been submitted for discussion/presentation at ASCO in June.  Whether either of these things will really happen remains to be seen.

Got done surprisingly early given usual time constraints...  Had a chat with a sweet man and his niece undergoing therapy, different dx and trial, while getting my infusion and he was getting his.  Sad that such a large monument for cancer care and treatment is needed at Moffitt, MD Anderson, Sloan Kettering,and other places like them.

Had we flown Air Tran I am sure we could have gotten an earlier flight had they had seats.  But, flying Delta is not very nice. use a much busier part of the Atlanta terminal, since it is a large Delta hub.  Two...they charge you for checking bags...not that we do.  And Three....even if they have empty seats...which the lady at the gate told us they had 41 of....they still want you to pay them $50.00 for the kindness of putting your tookus in one of them.  B and I kept our hundred bucks and chatted and napped 'til our scheduled flight.  Will NOT be flying Delta again if we can help it!!!

So...GREAT job fellow ratties!!!!!  Yes!!! to Pho Quyen and La Quinta!!!!  NO!!!!! to Delta and Holiday Inn Express!!!!  And...Alamo?????  It is what it is.....and that ain't great....but what'cha gonna do?

Back home to a good visit with Fred-o who kept the doggies while we were away.  More on the week that  - c

Saturday, March 9, 2013

This girl is on fire!!!

Yes, I am a multi-tasker.  I think most women are.  Cleaning the kitchen, paying bills, fun with children, inspiring girls to believe in their own beauty, dancing to the "Hey, Hey, Hey Song" round the playroom, feeling the strength of a melody, snapping beans, picking up the house, juggling the needs of friends and men and children...yet finding a space for between. And then...there's melanoma....scans, treatments, fears....those who support you...those who forget...  But, either way, it is a lonely road that is beyond most to fully understand.  And, that's ok.  It won't stop me from dreaming, or playing, or belting out a tune, while facing my reality and chores....most days.  Scans yesterday were their usual fun, but CT's of neck, chest, and abdomen as well as an MRI of the brain were reported out clear.  So, back to Tampa for more anti-PD1 next week. Just one more thing to fold into my day.  Check out the video below and enjoy yours. - c

Alicia Keys - Girl on Fire

She's just a girl and she's on fire
Hotter than a fantasy, lonely like a highway
She's living in a world and it's on fire
Filled with catastrophe, but she knows she can fly away

Ohhhh oh oh oh
She's got both feet on the ground
And she's burning it down
Ohhhh oh oh oh
She's got her head in the clouds
And she's not backing down

This girl is on fire...
This girl is on fire...
She's walking on fire...
This girl is on fire...

Looks like a girl, but she's a flame
So bright, she can burn your eyes
Better look the other way
You can try but you'll never forget her name
She's on top of the world
Hottest of the hottest girls say

Ohhhhh oh oh oh
We got our feet on the ground
And we're burning it down
Ohhhhh oh oh oh
Got our heads in the clouds
And we're not coming down

This girl is on fire...
This girl is on fire...
She's walking on fire...
This girl is on fire...

Everybody stands, as she goes by
Cause they can see the flame that's in her eyes
Watch her when she's lighting up the night
Nobody knows that she's a lonely girl
And it's a lonely world
But she's gon' let it burn, baby, burn, baby

She's just a girl and she's on fire

Monday, March 4, 2013

March Forth...again!!!!!

My favorite day.  March forth into spring. May it bring happy opportunities and much joy.  Thinking of you on your scan day tomorrow, Jonathan!!!  March forth!!!! - c

Sunday, March 3, 2013

Fun break from winter!!!!

"Our" lovely, shaded bit of beach on Paradise Island, Bahamas!!
The trees lining the beach in places reminded me of Puerto Rico, somehow. But that water color is distinctly Bahamian!!
Hat???  Check!!!
Walking back over the Paradise Island bridge to Potter's Cay.
Love all the colors...from pale pastels to vivid brights!
Row of fish shacks at Potter's Cay.  Lunch was delicious whole fried snapper with rice and peas, maduros and slaw.  B had the same, but with cracked conch...that is...conch cut in strips and fried.  Yummy!!
Our fish vendor.
Supper!!!  Now....
...and later!!
Morning runs on the beach to our palm in the distance.
A beautiful view once you get there.
And back again.
Waiting on a water taxi to Nassau...and avoiding too much "information" from the "information booth" ladies!!!
Marching flamingos at Ardastra Gardens!  Seriously funny!!
B liked taking pictures of the flamingos!!!
A lot!!!!!
Mr. Parrot grew tired of B's paparazzi tactics...squawking loudly at last...frightening children...and B the most!!!
A portion of the fish shacks at Arawak Cay where we had a great meal of cracked conch, conch salad (conch cut into small pieces and combined with onions, peppers, tomatoes and lime juice...sort of a ceviche), chicken wings and maduros at "Da Fish Fry"!!  Delicious!!!!!
Evening walks on the beach.  And who says a girl with melanoma and vitiligo can't have fun in the sun?  Thanks Bent!!!!  Much love - c