IS IT MAY YET?

hs 2014

These are words I find I repeat every winter, all winter, and have for decades.

When the cold, the snow and icy roads become too much for me my family hears me groan those words. They don’t mind though, they, too, are anticipating the mild weather, the greening of the grass, shrubs and trees, the rich scents of the soil as the ground thaws and brings with it the renewal of optimism.

There’s nothing like celebrating the transition from winter to spring when you are surviving and thriving with a disease that you have been told is terminal. Each season brings hope and its own beauty, but spring is Spring. Nothing compares.

“It’s May, it’s May, the month of great dismay
when all the world is brimming with fun, wholesome or un-
It’s mad, it’s gay, alive a lust display
Those dreary vows that everyone takes, everyone breaks
Everyone makes divine mistakes
The Lusty Month of May”
Lady Guinevere from the musical ‘Camelot’
Alan J. Lerner and Frederick Loewe-1960

The first of May has taken on an even more important role in the course of my survivorship. On May 1st of 2014 I attended my very first National Lungevity Hope Summit. Its a mind blowing experience to go from being the only lung cancer survivor in the room to being one of 130! (Then 150 in 2015!)

Each day of each session is filled with educational programs and stories of hope from survivors who were recently diagnosed to those of survivors who’ve lived 25 years and more with this disease.

Important for me has been the educational benefits of the Summit. I learned to inquire about pulmonary rehabilitation which should be standard of care for every lung cancer patient. I learned to breathe more efficiently and strengthen the muscles that support breathing. For reasons I do not understand, this is standard of care for heart patients only. But for the Summit I might never have learned to ask.

Other components include discussions of research that Lungevity sponsors, nutrition, the social impact of surviving cancer, the psychological aspects of dealing with cancer and more.

Why do I bring this up? Why do I believe it is so important you learn about this?
Because most important of all is that I learned that I AM NOT ALONE. And neither are you if you are dealing with any type of cancer. There are similar programs for most every type of cancers if you can’t find one for your specific cancer there are still programs that are aimed to celebrate your survivorship. On June 5th many hospitals have programs celebrating National Cancer Survivors Day. If you ever have an opportunity to attend something this special do it. Take advantage of all resources available to you.

With the Hope Summit coinciding with the greening of my world and the renewal of my optimism expect to catch me belting out the lyrics next weekend.

“It’s May, It’s May, that gorgeous holiday
When every maiden prays that her lad will be a cad
It’s mad, it’s gay, alive, a lust display
Those dreary vows that everyone takes, everyone breaks
Everyone makes divine mistakes
The Lusty Month of May

Whence this fragrance wafting through the air?
What sweet feelings does it’s scent transmute?
Whence this perfume floating everywhere?
Don’t you know, it’s that dear forbidden fruit”

Group photo courtesy of LUNGevity Foundation

All others by Denise Cutlip

All my friends get them. Why not me?

Or, when all your friends are on maintenance treatments and you’re not.

Axons, insertions, deletions, rearrangements, EGFR, ALK, ROS1, VGFR, PD-1, PDL-1, HER2, targeted therapy, immunotherapy, precision medicine, what do they have that I haven’t got?  Peer pressure is tough to withstand at any age and the need to keep up with the latest and greatest takes on even greater import when it’s your life you wish to protect.

One of the scariest, most exhilarating moments in a cancer patients life is the very last day of treatment. Some oncology centers invite patients to ring a bell, others present the patient with a Certificate of Completion.  What they don’t give you is a manual on putting your life back in order and how to  cope with being out from under the constant (and reassuring) scrutiny of the medicos.

For the duration of treatment you know you  get daily and weekly clinical care.  It seems that  your next encounter with a nurse, tech, doctor, phlebotomist is never more than 3 days away.  Maybe a week if you get a break in the chemo schedule.  But what happens next.  They can’t tell you.  There are no answers.  And so you wait.

My first 3 month CT came and went.  Then another.  And another.

With that break in my treatment I began reaching out and learning more about my dis-ease.  And there was so much to learn.

What peaked my interest most was this thing called maintenance treatment.  Like a mini chemo making sure that the little buggers stay in check.  For some its a daily pill, for others its a trip to the infusion center every three weeks.  Every lung patient I met, every care giver, they all wanted to know what type of maintenance chemo I was getting.  They were all getting them.

Bowing to peer pressure I asked my oncologist why wasn’t I getting any additional treatment.  After all, ALL of my friends were.  He responded that I hadn’t had any progression so far so why mess with a good thing?  You know what?  HE WAS RIGHT- AGAIN!  Then he added something about preserving the integrity of my bone marrow against a day when I might need full on chemo again.  Gosh, he’s smart and…

I am blessed.

 

maureen

Today’s blog is dedicated to my dear friend Maureen Mason.  Her journey with this non small cell lung cancer began less than six months ago.  Today her journey comes to an end even as I write.  She is the embodiment of the phrase zest for life.  Gentle landings, Maureen.   Gentle landings.