Thursday, August 29, 2013

Holding hands...

When things are tough, there is nothing better than to have someone there to hold your hand, especially if they have a magic wand in their other one....

Even lacking the wand, I have been well positioned to deal with the struggles in my life.  Very healthy going into my melanoma adventures.  Trained in medicine, so that what was happening inside me, and the plans folks were making around me, were comprehensible, not mysterious and foreign.  And so many hands....near and far, in places expected and un. I feel so fortunate to continue to discover new hands.  Some reach out with questions and worries, for whom I hope to offer answers, courage and reassurance.  But, even as I work toward that, their hands end up supporting me as well.

See life's a beautiful struggle, I record it
Hope it helps you maneuvering through yours....                        Macklemore

Life is a beautiful struggle.  Perhaps, my words can offer a bit of succor on days when that is needed.  I know that so many of your hands....have held mine.  Thanks -c

Saturday, August 24, 2013

SGI...Pictures of Summer!

It starts with a great visit!!!!!
Add Coquina clams....are they not beautiful?
And then....add Sally's babies!!!!  I didn't get to see this one in person, but Brent brought back these pics after a run on the beach!
The crazy Morris Bunch!
Frick and Frack!
Lucky sand dollars for all my peeps!
Returning from their adventure ACROSS the bay!
TEN years with melanoma, 25 with MacGyver, aka Bent!!!
Kayaking with Roo!
The best shrimp EVER!!!!  Thanks Boss Oyster and NICE man from Clarksville, TN!
Pondering Sunday Brunch choices at Caroline's....our departure tradition.  Thanks, St. George.  Thanks, peeps. Here's to ten more years! - c

Friday, August 16, 2013

Ten years with melanoma...

"My soul grazes like a lamb on the beauty of an indrawn tide."
                                                               Pat Conroy ~ The Prince of Tides

And, indeed it does. There is something wondrous, affirming, dependable...about the coast for me. I love the beach with its ocean breeze, returning waves, and beautiful creatures. I love the gulls' raucous call, the incredible road runner legs the sanderlings and pipers possess, ghost crabs scuttling sideways by, the tiny fish and sand fleas darting in the shallow tide, the lucky sighting of more mysterious creatures like the dolphins with their seemingly ever joyful frolicking or the slightly sinister ray half buried in sand.  I can happily watch the tiny, rainbow colored coquina clams wriggle up and down in the sand as waves wash over and uncover them for hours.  I love the shells and sand dollars.  In fact, one summer I set myself to the task of learning about each and every one that could be gathered on the Florida panhandle.  I read every book related to the topic our library offered and at one time, could tell you their habits, predators, life cycle, and shell architecture.  The knowledge has dissipated over time, leaving but an enjoyable memory and appreciation for the complexity of their lives.  Since I was a little girl, I have always loved to find small isolated tide pools created by departing tides, leaving their treasures behind.  I have found jelly fish, small sharks, mermaid purses, Portuguese Man o' War, and this trip....even a starfish! And of course, my biggest prize of all, getting to see Sally the Sea Turtle lumber toward the sea after leaving her eggs almost three years ago.

But, my heart is made even more content by the tides and creatures of the bay. The mullet jump  enticingly...just tempting you to try to catch them.  Tiny schools of  growing trout, spot tails, and drum dart in and out of the reeds. Herons watch carefully, heads tilted just so, from the banks. Blue crabs, hermits, and slightly disturbing black, hard shelled crabs go about their business.  Mocking birds, red winged blackbirds, and terns twitter and squawk as the pelicans fly in stately formations above.  Gulls flap and screech when osprey circle over head, with an occasional dip in the bay after fish. Tides in the bay are truly dramatic, changing quiet pools to running currents, to sand bars, within hours.  Life in motion.  Ever changing, but reassuring none the less.

We have been spending this week together while the kids are between summer and fall semesters on St. George Island, off Apalachicola, Florida.  I have lost count of our trips here.  This year, we are in Gone Fishing; a rental house we have visited twice before.  Our first visit to this home was 10 years ago, in July. I celebrated my birthday on that trip.  A dark mole on my back had been nagging at me, and during that trip, with increased visibility due to swim suits, Brent became even more worried.  We decided on my return home, I would make an appointment with a dermatologist.  It is bittersweet that this week, I celebrated my ten year survival after my initial diagnosis of melanoma on August 14, in the same exact place our worry spurred action. 

In Brent-like fashion, the date was not forgotten.  It was celebrated!  He even managed to MacGyver a fabulous surprise!  Suddenly, as I was about to serve a little snack of prosciutto wrapped shrimp....he shouted, "Wait a minute!  I didn't know you were doing that now!!!", while running from the room.  Moments later he returned, with a big plastic bag from one of the local swim/grocery/bait shops.  Within, a small box (Later discovered to be a Benadryl container...a purchase necessitated by the monumental red welts and swelling that currently make up his lower legs after an impressive reaction to yellow fly bites!!!) was carefully wrapped in a napkin (????, conveniently taped with bandage tape brought hither to deal with my absent pinkie skin!) appropriately decorated with mortarboards and brightly colored boxes and carefully utilized so that the "Congrats GRAD" was not visible. (Apparently, the visitors before us had celebrated a graduation of some sort and a couple of these celebratory napkins had been left behind in the dispenser. I had seen Brent fingering these earlier, and though noting it, had thought nothing of it since he has some, shall we say, mildly autistic tendencies, that require him to experience things in a tactile fashion as well as a visual one!) The inscription on the package read:  August 14, 2013 to Les, 'Ten Year Turtle Award'.Within was a "carved bone" (read plastic) locket of a turtle on a macrame necklace. And, yes....I cried. Happy tears.  Just as suddenly, Fred popped the cork on some bubbly that had been ninja-ed into the house as well.'s to my peeps.  The past ten years have been hard, unexpected, scary, and not exactly pain free.  They have also been beautiful, full, productive and something I would never have wanted to miss...despite the negatives.  Just this week, thanks to Fred's sharp eyes, we got to see a mockingbird attack a gigantic owl, who must have been too close to its nest...and win. Due to his amazing powers we all got to see a gar, hovering in the deep shadows of the inlet which during the outbound tide, became an incredibly strong current toward the bay, where the gar hid...waiting for weaker, unsuspecting fish to pass into his "gently smiling jaws"!  With Rosie, I got to kayak the tidal pools and inlets surrounding our well as a little foray into the bay proper!  I have run many miles this week, solely due to her encouragement. Bentie smiles and lends his hand....always ready to stroll on the beach he knows I love.  He runs there....hoping to find shells he knows I will like.  Ruthie, says, "Why, no!  Running at 0700 does NOT sound like a vacation!!!", but checks on me and supports me just the same.  Others....via facebook, text, and calls...let me know they care and share their lives with me.  There are even strangers....who just today, let me know that they have been reading and listening...and some small way...we have connected and both our lives have been made better...sometimes when that has had the least likelihood of seeming possible. soul grazes like a lamb, on the beauty of indrawn tides. May you find that which refreshes yours. 

To another ten years. Love - c

Monday, August 12, 2013

Mixed results from a criminal mastermind!

Yep, that's me. A criminal mastermind. At least according to the binga-heads! It all began with dinner a few nights ago. There was a really delicious spin on chicken noodle soup. (Build a traditional chicken soup base with celery, onions, and carrots gently sautee'd in olive oil with salt and pepper. Add chicken stock, bay and thyme. Make meat balls from chicken or turkey sausage with some added beaten egg, bread crumbs, chopped parsley, and grated parm. Bake at 400, turning every five minutes are so til nicely browned and add to your broth.   When almost ready to serve, add fresh or frozen tortellini stuffed with cheese. And there you have it....a special version of chicken noodle soup!) Anyhow, in trying to make a salad to live up to the soup, I decided locally grown cukes and zucchini/squash (Have you seen those? Super cute with top half yellow and bottom half green like a zucchini Easter egg?) sliced very thin and crunchy with a mandolin, lightly dressed with a lemon juice, olive oil, Dijon dressing would be just the thing! So, I am slicing away, guessed it...squash does a flip and no more finger prints or finger pad to my right pinky finger. The bleeding was prolific. The pain was impressive. Rosie was an awesome nurse. And trying to get an area of nothingness on the tip of one's finger to heal has been a challenge. But...according to the kids, I need only repeat the process nine more times and I will be the best thief ever! A real criminal mastermind! Not on your life! For my next jewel heist....I'll just wear gloves!

But, I guess that's just the way of it. A yummy dinner. A little less ease. Mixed results. Sadly, something many cancer patients know all too well. A melanoma internet acquaintance fought and struggled to get into an arm of my anti-PD1 trial in Tampa...sans vaccines, thank goodness! Travels from Utah. Has three young boys.  But, after three months of treatments every two weeks finds that while a couple of tumors shrank, others grew. Mixed results. Not the worst scenario, perhaps. But, not what you ever hope to hear....and not usually good enough to keep your place in a trial.

My friend Jonathan seems to be doing very well on his ADC trial in Nashville. Tumors shrinking on scans. A really wonderful thing. But...his life is rudely puntuated with weekly trips from CT to Nashville, TN! And the nonexistent side effects? Not so nonexistent with tiredness, leg pain, diarrhea, hair loss. When mentioned, like the good rattie he is...not a surprise. "Oh, yes. We have seen that. Try this. Do that. Perhaps we will adjust things should the symptoms continue." So? Once again, affirming my lack of trust in most providers when describing side effects as minimal...simply because THEY have not experienced them! Mixed results.

As for me. I feel mostly very well. Arthralgias have pretty much abated. The mucositis with mouth and tongue lesions, bleeding gums, and tender lips has not improved. I figure with no more meds, it's got to get better sometime, right??!  Mixed results.

And don't misunderstand. I fully realize how very lucky I am. NED for 2 years, 10 months is nothing less than amazing post brain and lung mets with a diagnosis of melanoma for ten years now. There are few melanoma patients who wouldn't be thankful to be in my shoes....irritated mouth and all.

Lucky, huh? Did you appreciate your 'luck' today? Take it from a criminal mastermind...there are often....mixed results.  But, I will keep working to see them improve...for all of us. - c

Sunday, August 4, 2013

Beautiful words, from an amazing melanoma warrior, and friend~

This is part of a post made by a dear friend of mine on the MIF forum.  If he can preserve such an inspirational attitude and appreciation for all that is good, after all that he has endured....there is absolutely NO excuse for the rest of us.  With his blessing.....

[Regarding] Pati's husband sorrowful post - very powerful and sad. She was so compassionate and smart, a real fighter and alive human being.

This fight to find good treatments for advanced melanoma is extremely frustrating, often unfair, filled with blind alleys, and at the same time more hopeful than it's ever been. We can be driven into making choices we never thought we'd consider out of a lack of reasonable alternatives. It feels terrible to have one's oncologist say, "I'm sorry but I have nothing more to offer you." And we can wish for pharmas, the FDA, etc. to make decisions on promising drug development more rapidly (and compassionately), but in many cases that's simply not how things work - often very depressing.

We have a lot of fallen warriors, a lot of wonderful and very real souls who have not made it, but there are increasing numbers who are, for whatever reasons, coping and making this more of a chronic disease state. So in spite of it all, there really is hope now.

Take good care, and make your days special,


Your words did much to ease my heart, my friend.  Pati would be proud.  Hugs - c

Saturday, August 3, 2013

Merde, merde, merde!!!!!

My heart breaks. Read Pati's husband's post on her blog: Leap and Live

How can this be?  How can this be a month already?  How can TIL...the quintessential melanoma therapy...end in death....not success?

I know how.  Pati didn't die of melanoma....actually.  She died of sepsis.  And DIC (disseminated intravascular coagulation.....I'm sorry, just use google and wiki....I don't have the strength.) I've seen it too many other other circumstances.  The result is far too often...the same.

That which is to cure us can certainly kill us.  Then, there's POW on MPIP telling people not to say that Interferon is "liquid poison"!  She doesn't have melanoma!  She hasn't taken interferon!  Neither have I!!!  To those of you that have partaken of the bitter it whatever you like!  To those of you that have suffered with studies that have been disbanded, unreported, found unsuccessful..... 

I am so sorry.  I will fight for each you...for your right to say what you have the legitimate report that you deserve...for the right to pursue other therapies (even if the company wants to PRETEND the one you received was legit).  I don't know how much good I can do...but I will not stop!

MERDE!!!!!!!!!!!!!!!!!!!!!!!! - c