Sunday, April 22, 2012

No. Concealed. Ugliness.

My title?  Totally lifted....from an amazing blogstress...Oonaballoona...that Ruthie turned me onto. (Check her out!!) Ostensibly a sewing blog, but I love the things she writes and the way she looks at things.  She began sewing so as to make the clothes SHE wanted to wear....no matter what other people thought of them.  She personifies flare, honesty, enthusiasm.  But, apparently, she had a week about like mine. And this was her conclusion:  

" i want to make things that are as pretty on the inside as on the out.  no concealed ugliness.  
I LIKE THAT.  No.  Concealed.  Ugliness.  in sewing and in people."

  I like it too.  Thanks, Oona! Here's to being who you are, wearing what you like, saying what is true.  It is not always pain free.  But, it is freeing and you don't have to be frightened, worried, and ashamed any more. - c

Thursday, April 19, 2012

Across Two Aprils

April on the Mountain.  I can hardly believe that it has been two years since I started this blog.  In some ways it seems like it was only yesterday, and in others, light years ago.  For those of you who have supported my rantings and musings here, I am eternally grateful.  You have given me strength and lifted my spirits in ways that I can never explain or repay.  Thank you.  However many Aprils you may be lucky enough to experience, they will always be too few.  Much love. - c  
    

 

Sunday, April 15, 2012

Perking up.....again!!

Ran really well yesterday and today...if I say so myself!!! Aches and lesions and rash much better. Spring home repairs outside - check! Spring gardening/cleanup in yard - check!  Spring cleaning inside - check!  (Well...as soon as Brent and the kids do their part in the "playroom"!!!) Projects for Rosie's new apartment - check!  Dogs nursed back to health - Karm's UTI post last incarceration and Z's early spring rain skin crud - check! First of two required study courses and tests for NP certification this year  - check!

So....I want to finish my tablecloth (No hurry yet...not putting it out until the pollen dies down!), finish my next study course for my certification and I'll be free to help the kids with their projects between semesters and watch B mow and water while reading on my garden bench!!!

Here's to summertime chill'in! - c

Friday, April 13, 2012

Crazy Sauce!!!

This treatment is a strange one to say the least.  Woke up around 2am on Thursday, suddenly realizing that my tongue was sore and all my joints were aching....and sure enough...the past couple of days have been just as though I had received my anti-PD1 infusion last week!

Oh, well...  I've been enjoying my pretty yard with its yellow iris and red roses, rhododendrons, azaleas, wood poppies, and peonies.  The forsythia, dog wood, and cherry trees are done, with their blossoms littering the ground below them.  Brent has fixed me a garden bench in the midst of it all...looking forward to relaxing reads while resting there.

Meanwhile....finished some projects indoors, working on some needle work and continuing education studies for my license/certification, and finishing up a table cloth for the back porch.  Ran the monster today, short...but I can still say I did! - c

Saturday, April 7, 2012

When you start jogging sans pants....

....but WITH shorts!!!....for the first time of a new season...you suddenly realize how much dog slobber has been placed on your pant leg for the past several months!

Just a small epiphany that came to me the other day.  You know me, forever enthralled by the small, comical, minutia that is life.  Had a hell of a day today.  But, a big thanks to all the peeps that made it better.  A special shout out to a new friend in Florida.  When unsuspectingly checking HER blog for a small peek on how she's doing and what might be making her smile these days, found a note to me!  Had to read it twice to be sure, but, Yep!  There it was, a congrats on 15 months NED. Thanks, Jeanne.  It meant more than you will ever know.

Then, looking about a bit more, I find that Carol Thomas, a pastor and melanoma patient herself, from NC who has her own blog, and works so hard to support melanoma patients and their families, has listed my blog, along with many others...and categorized us as - "those who dare to care".  That was nice. I appreciate being included.

Blogs are weird, slightly narcissistic things, I suppose. Mine is my way of thinking through things, my catharsis. It is my best way of sending my thoughts and feelings out to those who care in an efficient and reflective way.  It is the best way I can think of to write my story about the grand experiment that is anti-PD1 in a manner that might be useful to those who join/seek the experiment for themselves or for posterity to see what exactly happened to me under the influence of same.  A place to post info about melanoma as best as I understand it.  A place...for me to be me.

Thanks for listening. - c

Sunday, April 1, 2012

What I've been saying about "indolent melanoma"!

It is pretty clear to me that everyone with melanoma is in for a difficult ride.  The other part that is very clear, is that some people are diagnosed and within a year or two they succumb to it's evil tide. At the same time, there is a relative handful of others...like myself...and some I have found through the boards and in studies...who, though still having their own challenges....have managed to have relatively long stretches where the disease seems to lie dormant.  Clearly, no matter which group you're in at the start...once melanoma kicks into high gear....."Girl! You're in danger!!!"  Though I cannot consider myself in that group any longer, I was termed for years as a patient with "indolent" disease.  I went 4 years between my first dermal primary (albeit with a positive node) to my next and then another 3 years until "something" was found in my lung.  The "something" sat in my lung for at least one year....unchanged.  Granted, after the bronch that determined it was, in fact, melanoma....I rapidly found that I had crap in my brain and soon after that I had crap on a tonsil. During all of those years I had no treatment other than surgery to remove the offending crap.  Luckily, now...I have been NED (no evidence of disease) for over 15 months.  But....why the difference?  How do some people rapidly spiral down...just moments after diagnosis and others of us last 7, 10, 17 years......disease free?????

I have been ranting to Brent about this for some time.  Telling him that THIS is what they need to be studying!  THIS is what makes a difference.  Something in the folks who remain "indolent" needs to be found.  How do they do this?  How do they beat the beast into submission...if only for awhile?????

Well....finally...they are:
http://www.ncbi.nim.nih.gov/pmc/articles/PMC2821074/?tool=pmcentrez

Dormancy of Metastatic Melanoma   By:  Ossowski and Aguirre-Ghiso

"...disseminated melanoma cells do enter periods of prolonged dormancy and that finding ways to induce it, or to prolong it, might mean an extension of symptom free life for melanoma patients."


"Ultimately, understanding the biology of dormancy and the mechanism of dormant cell survival, might allow for their specific targeting and elimination."

In their study, more than 20,000 patients/charts were examined and patients with cutaneous melanoma who had a delay in metastatic disease for 5-10 years totaled 10-20% of those patients.  Patients with a delayed met development for more than 10 years totaled only 0.8-3.5%.  (See why some people still say interferon works?????!!!!!)

Anyhow....can't really say what all this means.  But, I think it is critically important for the future of melanoma patients.  Thanks and kudos to Ossowski and Aguirre-Ghiso! - c

PS I'll give a zillion dollars to the peeps who recognize where the first quote in bold comes from!!!! -c

Perking up!

Had a great weekend with Brent and Willie!!!  Got a lot of weeding and mowing done in the yard.  Got the beds all prepped.  Planning to put in some herbs, tomatoes, and peppers next weekend.  Caught up the laundry that had grown unchecked over the past two weeks.  Doing a bit of spring cleaning indoors as well. So!

Running better, between the anti-PD1 effects fading and the boost I got after training with my personal trainer Rosie-Roo while we were in St. George.  Joint aches are much improved.  Mouth ulcers are gone.  May have to get B to take some more vitiligo pics soon as that is much increased.

Dogwoods, wild azaleas, red buds, and cherry trees are beautiful on the mountain.

Funny Brent story.  As he went out the door to start his yard work, Brent reappeared suddenly, with a stressed look, "It's started!  A big copperhead!", and back out the door he went.  I went out to assist and he had a great laugh over his April Fool's joke...as there was no snake....or so he thought.  Later in the day, when he was spraying my roses....a great big black snake dropped out of the foliage....sneaky snaked around and coiled up to hiss at him!  Well deserved I say!  God IS a WOMAN....I've been telling him!! Now the joke's on whom?????

Happy day - c