A mixture

The past week has brought "a mixture" of thoughts, feelings, and activities....here's a sampling:

The Mundane:
It was a busy work week, since I worked an extra day.  But, being serendipitously off on Thursday allowed me to catch up on chores and clean my windows!  (Frankie and I are alike, Ruthie!  It requires a Special Leave day to do it!!!)  This effort carries with it, an optimistic view that most of the pollen has done its fertile duty and will remain somewhat less thick.  At any rate, the view of my pink roses with the bed of yellow and cobalt irises beneath is much clearer now.  Friday was the annual March of Dimes, Walk for Babies for which my office always gives a great show of support...
both in attendance and dollars earned.  So, after work we all met there and Bentie was sweet enough to drive down to join us for the event.  Way to go, Peds Care!  And a huge thank you to all the other caring folks who gave their time, money and effort in making the event successful and providing resources for children with birth defects and prematurity.

Funny Date night....times 2:  
1:  So...after the walk...Brent and I decided to check out a new Cuban restaurant near the office.  It had come highly recommended and since Brent and I both love Cuban food and can't readily hit the great spots on Calle' Ocho in Miami were very eager to try it.  In we went and were eagerly greeted by an exuberant fellow...apparently the chef...behind the counter.  While we both spend at least 60% of every work day speaking Spanish...Cuban Spanish is a whole other animal!  The man's excited exclamations were incomprehensible!  Rendering the Brent-ster, whose Spanish is far better than mine, deaf and mute!  So...I was on my own, but in that strange way in which off my beaten path of childhood illness and medical jargon that is my Spanish works for me....after a disquietening 30-40 second time delay...I comprehend...and can move forward in some lame Spanish manner.  And so we did!  Brent's time lag finally recovered as well....and he was soon jabbering away.  He and the chef/owner ended up chatting away about Cuba and how Brent knew so much about this and that and Brent allowed that he had been married to a Cuban.  This brought big eyes with very high eyebrows as the man gestured to me, incredulously!  It was quite a joke, when Brent explained..."Oh, No!  Different wife today!!"  By the end, we were all pals and Brent was speaking in French and English to some new arrivals who were from Cuba as well as the Dominican Republic.  He's a silly boy!  It was fun.
2.  Then, last night we had great plans to run some errands and manage to fit in a date night as well.  At a record pace we made a dry cleaning run, a drop off at the recycle and Good Will, nabbed a car wash, a drug store stop and just as we were ordering decadent fries and dogs at Good Dogs by the park...the phone rings and the doc covering the evening clinic is sick. So....end of date night and B is off to save lives and save the day.  Oh well...finished my errands and got the laundry caught up at home, watching The English Patient while doing my nails.  Brent arrived at the end....heartened as always, to find me watching a "cheery movie"!

SO....you don't like your life:
Odd thought, I suppose.  But, one that's been on my mind lately.  So many folks pick themselves up, deal with the cards they're dealt, move on.  Others...dwell on their bad luck, misery, bad choices, mean people, hard times, etc....and wallow in it.  I'm sure dealing with Stage IV melanoma, or any other terminal disease, changes a person.  I think I am probably less patient....not that patience was EVER my forte....too many things to do and too short a time in which to do them, has always been my guiding principle and I am certain I have not relaxed that mantra one bit. However, I think I am more patient with children and those who are putting forth an effort.  I find myself going out of my way to try to assist them.  I also think that I am more appreciative of things...small and large.  But, have I any patience for whining, complaining, wishing your life was better....or over...NO!  Not at all!  Don't like your life?  CHANGE IT!  Babies and children do it every day.  They topple over....they try again.  They try to speak, no one understands....they try again.  They want to jump, to run, to read...to pass this subject...they work hard...they try again.  That's really all it takes.  Ask anybody with a terminal illness.  One day, you're ok.  The next day, you're not.  They endure this pain, this surgery, that treatment.  They adapt to insults, to limitations, and they move on.  Making the most of every moment they can.  Working to deal with the latest injustice, the disease, or the cure, hands out.  Want to hear the real kicker???  Most of them do it with a great sense of humor and incredible strength.  You know how?  Because they know...LIFE IS A TERMINAL CONDITION!  Nobody is getting out alive.   So you damn well better make the most of it!  Don't like your life?  CHANGE IT!!!!  We ALL.....have the choice.  We ALL can make the most of what we have.  We ALL can make our lives better....or not.

Remembrances:
On this two year anniversary of lung amputation days after brain zappage....it's weird.  Ran very well today...and lately.  Seem to be able to think ok.  Heading down the last stretch towards new scans and more treatments in my tri-monthly punctuated life.  But, my thoughts have been about a small thankfulness...that once, about 25 years ago....I did something right.  When a small patient I was fortunate enough to love and care for, for about 13 years, needed a jugular line placed...I...at age 19 or 20, was smart enough to know...she shouldn't have to do this alone.  Having been through this myself...it is not the least bit fun.  Plastic sheeting over face.  No air to be had.  Numbing agent administered, but given no time to act.  Puncture made and line threaded immediately....a very strange and unpleasant sensation...with all the people around you...acting as though you aren't even there.  But...no!  With mask and hair covering applied.  The rest of sterile technique be damned.  I was under the plastic, sterile drape with her.  To kiss her cheek.  To hold her close.  A sweet baby, with no way to know what we were doing...much less why.  I made sure anesthesia had due time.  That she was safe and felt ok.  I did it right.  For that...I am grateful.

The final mixture:
Take 1/4 c olive oil.  Bring to a gentle heat. Add 4-5 cloves garlic, minced. Warm through for a minute or so...but don't allow to brown.  Take off heat and add:  1 tsp dried oregano, 1 tsp or so of fresh thyme, 1 tsp salt, pepper, the zest of one lemon, and 1/3 c of dry white wine.  Preheat oven to 400.  Coat both sides of 4, bone in, skin on, chicken breasts in mixture and pour remainder in pan.  Place a slice of lemon beneath each.  Roast until fully cooked and skin is crispy for 40 - 45 minutes, depending on size of breasts.  Delicious. 

ENJOY...this recipe...and the rest of your life.....what you have today....what you remember.....it is all any of us have.  Love - c.

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

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

 

 

 

 

 

 

 

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

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

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

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