The Soft Breeze…………….

When Matt Purdue and I started the YSC Tour de Pink on the East Coast in October 2004, it was small, I mean very small. 6 riders. Matt and I would speak to the participants the night before we rode out and generally every day of the route. We randomly asked people to come to the stage, made up and gave people awards and generally improvised each night. It was fun, silly, and completely without a process until pretty much the day of. We were riders, volunteers and g4 staff; we were a family and really didn’t worry about too much structure.

As the Tour grew and the YSC added event staff and we created committees, things became more formal. We realized it was very important for the participants to meet the survivors and caregivers that benefitted from the funds raised by TDP for YSC. I was afraid too much formality would take away the family sense of community, the fluid and unplanned nature of the meals where people spoke. Boy was I wrong. By really thinking about what we wanted to get out to our community of riders/volunteers/staff/friends and family, we met and heard from some of the most amazing people who changed other people’s lives.

For me, one of those people was Libby Hodges. We started TDP West Coast in October 2010. It was small and intimate the way East Coast started. In 2011, our second TDP West Coast, Libby Hodges and her sister Lisa McGrory were our survivor speakers. They told their story of sisters being diagnosed with the same disease, with one sister’s disease advancing rapidly and the other’s staying stable. The oddity of breast cancer, sisters both with breast cancer but with very different diseases.

Libby was diagnosed in 1996 and metastatic in 2006. The cancer would stabilize and come back elsewhere, stabilize, move on again. She told a room that was pin drop silent her story. Libby used humor, sarcasm, honestly and emotion. When she and her sister finished telling their stories, there wasn’t a dry eye in the room. We stood, honored the sisters and we admired every pedal stroke they took. Over the next 2 years they came back with a bigger and bigger team. Riding hard and riding strong. Libby trained and pedaled like the “never give up” gal that she is. We became fast friends.

In 2011, after 13 years of stage 1 and 2 breast cancer, my cancer metastasized. I immediately got in touch with Libby. As many of you know, I am not a gloom and doom person, I did not want to join a mets support group. I have amazing support in my breast cancer friends and my non cancer family, friends and partner. Libby and I were kindred souls and I knew speaking with her would be what I needed. This love fest continued by phone and text. As my cancer did crazy things, so did hers. Finally my cancer went to my brain. Scary shit and she was there. There are very few people that can understand what it is like to live with metastatic disease unless you are actually living it. The thought that the disease has gone where it wants and you are playing whack a mole b/c it does keep coming back. However, Libby never gave up.

Now some of you may say by deciding to end treatment in the Spring, she gave up. It is just the opposite. Libby did not let cancer rule her. She ruled her cancer. She made decisions about her treatment in consultation with her doctors but it was always Libby ruling the cancer. Her decision to choose quality over quantity, as she so eloquently wrote, was her ruling cancer. Libby chose how to lead and how to exit this life. That my friends is not “giving up” but “taking charge”.

Many of you know that I am agnostic bordering on atheist. I do not believe when someone dies another angel gets its wings. I think it is a nice expression and I am not criticizing those who say it. Everyone believes what they want and everyone has different definitions of faith. When Libby passed over yesterday (7.18.14), the soft breeze came to Libby and with loving care cradled her soul and took it to a beautiful and peaceful place.

Libby lived her life with honor, integrity, love of friends, family, humor, spunk and beauty. Where she goes next, none of us truly know. I believe her spirit, her soul, will find a new place in the universe and will continue to bring wonderful things to others. This next journey for Libby will hopefully be peaceful, pain free and worthy of Libby.

I will miss our chats, texts and emails. I will miss being on the bike with her and talking about all the body parts that were ruined that day…. in gory detail. I will miss my mets buddy. I will miss the light in the Spoke Spinner Lemon Heads Team this year because that light was Libby. But we will all honor her in California in October 2014. Libby would demand humor and happiness, not sadness and gloom. We will give her that.

Cancer did not rule Libby. Libby ruled cancer. For this I am eternally grateful for her helping to show me the way.

Libby, you will always have your own special place in my heart. I will name one of my brain tumors after you. Sorry kid I will probably name it and then have to kill it. But I know you understand.

Rest, fly, pedal and tap me on the shoulder in October or at least give me a push up a hill!

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Love you always.

P.S FUCK YOU CANCER. Libby made her choices, cancer did not.

THE BOOK THIEF

Everyone has different opinions and preferences on literature.  I thought “The Book Thief” was a wonderful novel.  It is hard to “enjoy” because of the subject matter, but it is a worthy read.

The narrator of the story is death.  Not death as the skeleton in the black hooded cloak with a sickle, but death as a thought provoking, sensitive caretaker of souls.  The book takes place during Hitler’s reign of terror and thus, death plays a prominent role catching the souls of those leaving their current physical embodiments and cradling them in death’s arms to deliver them safely to the next life.  My image of death from this novel is a soft breeze that comes to you, lovingly lifts your soul from your body and leads you safely to the next journey.

I know we all have different beliefs.  For me, I have always believed that our soul, energy, life force – however one chooses to define it – continues on in a new form each journey.  This is very comforting when I think about the lives that have passed on whether from breast cancer, illness, age, tragedy or natural demise.  The soft breeze came to them and lifted them out of pain and suffering to a peaceful journey. For that I am grateful especially for our survivor sisters who fought bravely against the evil warthog cancer and have left us in their current form.  They watch over us – their survivor sisters – and their loved ones to help us on our journeys without them.  This may give comfort to some and possibly offend others.  It is never my intention to offend.

And so, as always, I close with a loud FUCK YOU CANCER!  You evil warthog.  You may ruin our physical beings but you will NEVER ruin our souls.  When the soft breeze arrives it will lovingly cradle our souls in its arms and our life force will continue without even a tiny atom of you. I hate you cancer with every fiber of my being!

My soft breeze will not arrive for many, many decades because I have too much to do to eradicate you and your evil soul.  FUCK YOU CANCER! No soft breeze for you.  Only thunder, lightning, tornadoes and ultimate destruction.  You deserve nothing, not even the black hooded skeleton with the sickle…………………………

 

Another Day Above the Dirt

Yep, that’s what I mean to write.  I’m approaching the 52nd year that I will continue to wake up above the dirt and not under it.

Hey, you don’t read this blog for my tasteful prose – really????

If I am not above the dirt that means:

1. I’ve been kidnapped for my wealth and charm and buried alive until the ransom is paid (I clearly watch too much TV)

2. I’ve been in a natural disaster and am buried alive under a pile of rubble (again, too much TV)

3. I’m dead (clearly not an option).

As I approach the beginning of my 52nd year on this earth and in this particular body, I’m sandwiched between 2 currently life altering events……………….My June 3 Pet/CT scan showing No Evidence of Disease and my upcoming June 16 Brain MRI that I hope (actually demand) also show No Evidence of Disease.  It’s a SCAN SANDWICH! And I really hope it is a tasty sandwich at that.

And so, on Flag Day I will celebrate the start of my 52nd year above the dirt.  Kind of ironic because when I was a kid (both physically and mentally as opposed to now where I’m just mentally a kid) I thought 50 was ancient and figured if I lasted that long, so be it.  Now, I want 50 more healthy years above the dirt.  Yeah, I know that takes me to 102 but I figure by that time 100 will be the new 70!

So happy fucking birthday to the cashmere cancer girl.  I honestly don’t understand why I’ve made it and so many others have not.  There allegedly is some grand purpose, whatever it is, I’ll take it for more years above the dirt with the people I love and those I hope to touch along the way – good or bad.

I ask one favor of all of you my dear readers, raise a glass on Flag Day, not to me but to everyone fighting cancer who will be with us for 50 more years and those fighting who will find another embodiment of themselves – a healthier one – in these years.  Because my birthday is not about me but about what my days above the dirt can bring to others.  I think we all owe that to the universe.

Be kind to those in your life, we never know what is behind the mere flesh we see.  Everyone has a story and we can’t presume to know what someone is going through.

And with that……………FUCK YOU CANCER! I’M STARTING MY 52ND YEAR WITHOUT YOU!!!!!!!!!!!!!! CHOOSE OPTIONS 1, 2 OR 3 ABOVE UNDER THE DIRT BUT DON’T TAKE ME WITH YOU.  I’M CHARLIE SHEEN BITCH AND I’M WINNING!!!!

Unicorns 3 Warthogs 0

The scene……….

Lisa walking into the imaging center with Foo Fighters playing in her head.  Mom is waiting for her.

Lisa hugs mom.

The conversation……………….

“Hi Miss Frank, Hi Miss Frank, Hi Miss Frank”.  It’s old home week at the imaging center.  Thinking to self, one has to wonder when everyone knows your name when you walk in for your PET/CT scan.

“Hi ladies!  Great to see you again.  Hey what about a frequent scanners card?? Buy 10 scans get the 11th free?”

hahahahahaha………….

The paperwork

Someone has to come up with a better system.  Pre-filled forms for editing perhaps?  Instead every time I have a scan, I have to fill in the same medical history information.  And so I do it again because I really should do everything the same every time to keep the Unicorns coming back.

The prep

Radioactive…radioactive……….Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I’m radioactive, radioactive (thank you Imagine Dragons).  Interesting factoid.  The nuclear medicine for the PET scan stays in your body up to 8 hours.  If you go over a bridge, tunnel, in a subway or any other high security area, you will register as radioactive.  Now I did not go to any of those but I just may do it for fun after the next PET scan.  Oh and of course, the required Ativan.  Me and small tubes that my body gets sausaged into, not my idea of fun without some good drugs.

Headline……………CASHMERE CANCER GIRL RESISTS ARREST AFTER REGISTERING RADIOACTIVE.  SHE WASN’T UPSET……..SHE WAS SIMPLY GLOWING!

The test

Once again, all the scan techs greet me like a long lost friend who they haven’t seen in 3 months.  Well, they haven’t.  Each one is nicer and more caring than the next.  I drink my contrast, rest and hang with mom.  Nothing like a little PET scan quality time with mom.  Who needs lunch, spa days, theater nights when you can have PET scan time PLUS RADIOACTIVE MATERIAL IN YOUR BODY!

The finish.  Time to go!  Mom and I go to Alice’s Tea Cup for tea and scones.  I mean doesn’t everyone pretend to be Alice in Wonderland after a PET scan?  Well, if not, you are definitely missing the boat.

THE RESULTS………..DRUMROLL PLEASE………………….

Doc Rad Onc – Excellent Scan

Doc Onc – Clean Scan

Me – Holy Shit really??  and then, I read the scan results.  AND I QUOTE ” SINCE PET/CT 2/27/2014 NO EVIDENCE OF FDG AVID METASTATIC DISEASE IN THE NECK, CHEST, ABDOMEN OR PELVIS.

BONES “NO FDG AVID OSSEOUS LESIONS:

HEAD/NECK “OF NOTE, MULTIPLE SUSPECT METASTATIC INTRA-AXIAL LESIONS DESCRIBED ON THE MRI OF THE BRAIN DATED 4/7/2014 ARE NOT IDENTIFIED, PERHAPS BELOW THE RESOLUTION OF PET”.

Lisa – HAPPY FUCKING BIRTHDAY TO ME!!!!!!!  U

Now friends, you know I am not naive enough to think that this is it and the warthogs will never pounce again.  Anything can happen at anytime.  But for now UNICORNS PREVAIL, CANCER SUCKS IT AND DIES.  THE WARTHOG LOSES YET AGAIN!!

We’ve had a bad few months with women dying, women getting sick and staying sick, a parade of horribles.  I write and fight in memory of and in honor of all the other young women living with breast cancer, surviving breast cancer and of course, living with the metastatic beast.  FUCK YOU CANCER!  SUCK MY ASS!  YOU WON’T GET ME.  I HAVE TOO MUCH TO DO AND I LOVE MY LIFE.  I’M NOT A MISERABLE EVIL CELL SUCKER LIKE YOU. STAY AWAY BECAUSE I WILL DESTROY YOU EACH AND EVERY TIME.

THAT IS ALL…………………….

 

THE DAY BEFORE MOTHER’S DAY……………………..

WARNING! THIS POST CONTAINS EMOTION, HONESTY, HOPEFULLY INSPIRATION AND NOT NEARLY THE HUMOR YOU ARE USED TO.  ENTER AT YOUR OWN RISK!

About 3 months ago, doc neurosurgeon asked me if I would speak at the annual meeting of the Gamma Knife Site Administrators. Without really understanding who or what this was, in typical fashion, I agreed. I received an email a few days later from a wonderful woman coordinating the meeting.  I learned the meeting was sponsored by one of the companies that makes the actual gamma knife machine #LGKAdmin.  Again, not really sure what I had gotten myself into, but happy to learn and help.

I was about to embark on an adventure with some of the most amazing people I have met on this journey.  The basic gist of things was they wanted me to speak about my cancer journey and my gamma knife experience to a room full of folks who set up and work the gamma knife centers.  Personalizing the experience by hearing from a patient was really important to them.  As I told doc neurosurgeon, I was humbled and honored to be asked to do this @Elekta.

Today I honored not only my amazing mom for mother’s day but i was joined by, and honoring, my incredible dad, brother, partner, sister and many of the people in that room who made it possible for me to be there including doc neurosurgeon and doc rad onc- because I truly believe without gamma knife I would not have been standing there today.

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I told my story which many of you know because you have been on the journey with me, read my blog or heard me speak at YSC  events @yscbuzz and @ysctdp.  But these wonderful people who work to save lives everyday, hear it for the first time.  They heard about the first, second, third, fourth and fifth times I was diagnosed with cancer.  And I told this caring audience heard about the darkest day in my cancer journey when I truly thought there might not be anything left.  One year ago when my brain mets returned, when Steve and I hugged and cried holding each other on the living room floor and me wailing “I don’t want to die.  I don’t want to leave my love, my friends, my family and my life”.  And that day we truly did not know where to turn.  And then we were introduced to doc neurosurgeon and gamma knife.

Please take this the way it is meant.  It is not meant to be arrogant but to be powerful and encouraging.  At the end of my tale, the audience was on their feet.  I believe I touched them and I hope made them see how much they all matter in our care and also, how much we as patients, and our loved ones, matter.

I am honored, I am humbled, I am inspired by what they do.  Today I spoke on behalf of myself, my sisters with breast cancer whether stage 1, 2, 3 or metastatic and those who will someday have to face this warthog beast.  We must always have a voice.  We must always push the medical profession to go farther and better.  We must demand that we get the best and the brightest and we stop dying because our bodies can no longer survive the toxic treatments.  We must fight for ourselves and for everyone else.

NEVER GIVE UP.  NO RETREAT, NO SURRENDER.

AND OF COURSE, WE CAN NEVER END A BLOG POST WITHOUT OUR RALLYING CRY………………………….

FUCK YOU CANCER!  WE WILL LIVE, WE WILL THRIVE, WE WILL SPEAK AND ADVOCATE FOR OUR LIVES! FUCK YOU CANCER YOU HIDEOUS WARTHOG.  DO NOT DARKEN MY DOOR BECAUSE YOU WILL NOT WIN…..NOT NOW….NOT EVER.

 

 

 

From The Outside Looking In…………………………..

lisafrank212:

Take a look at the latest pissed off cancer post!

Originally posted on yourcryingonmycashmere:

When my best SU Law girl (GO ORANGE!…oh wait, that didn’t work this year now did it……….); Anyway, when she told me that at times she felt that she was going through cancer with me — well, she was — but what she meant is that she really felt it and literally, my shitty days were also her shitty days.  My triumphs against the disease were her triumphs as well.  But regardless of how close 2 people are, the one without cancer is always on the outside looking in.

And now, even with all I’ve been through and all I know, I am on the outside looking in.

Let me explain.

As we get older, we meet fewer people who we actually connect with and consider family, a true part of our lives forever. Well I met this woman about 3 years ago and we instantly bonded.  At times based…

View original 373 more words

From The Outside Looking In…………………………..

When my best SU Law girl (GO ORANGE!…oh wait, that didn’t work this year now did it……….); Anyway, when she told me that at times she felt that she was going through cancer with me — well, she was — but what she meant is that she really felt it and literally, my shitty days were also her shitty days.  My triumphs against the disease were her triumphs as well.  But regardless of how close 2 people are, the one without cancer is always on the outside looking in.

And now, even with all I’ve been through and all I know, I am on the outside looking in.

Let me explain.

As we get older, we meet fewer people who we actually connect with and consider family, a true part of our lives forever. Well I met this woman about 3 years ago and we instantly bonded.  At times based on our dynamics and our family dynamics we were convinced the cribs could have been switched around in the hospital.

Stick with me FOLKS!  THERE IS A POINT COMING!

Last Fall, this dear friend, lets call her BOOBS, came to me and said “I found a lump in my breast”…..and my heart sank.  And so it began that someone in my “family” had been diagnosed with breast cancer.

SOME OF YOU MAY BE SAYING WAIT!  I’ve known Lisa for all the years I had cancer, what is she talking about?

I realized that all the women who are a regular and dear part of my life, were all diagnosed or living with cancer before we met.  BOOBS is my first close friend to be diagnosed for the first time since I entered this Unicorns and Warthogs world.

Now BOOBS and I are very much alike.  Optimistic, loving life, wonderful families……………but BOOBS kept waking up saying “this isn’t happening to me” and there was not a FUCKING thing I could do about it.  I was on the outside looking in. I knew what I would do. I could listen and at times suggest but only BOOBS could really decide how to handle this feeling. And what she ultimately needed.

BOOBS is still on her breast cancer journey.  Chemo, Rad, Bi Lateral, Triple Neg. BRCA+.  I mean shit really – fucking leave BOOBS alone.

BOOBS is recovering from surgery. Getting her well deserved rest.  Most of us know how crappy the few days after surgery can be and just how much cancer SUCKS!!!!!

My loving Orange friend, I always cry at your pain over my pain.  And now, I understand that pain even more, from the outside looking in.

Cancer, you will always be on the outside looking in.  We will NEVER EVER let you in.  You don’t deserve to be a part of our warm, loving family.  SO FUCK YOU CANCER – STAY AWAY FROM MY FAMILY AND FRIENDS B/C WE WILL DESTROY YOU, UGLY AFTER UGLY CELL AND YOU WILL NOT SURVIVE IN OUR BODIES.    LEAVE OUR BOOBS ALONE (great word play right?)

GO AWAY, FUCK YOU, GO AWAY, DIE, GO AWAY, EVAPORATE INTO THE ETHER, GO AWAY, FUCK YOU, GOOOOOOO AAAAWWWWWAAAAAYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYY!