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.

 

 

 

 

Reflections on a Special Kind of Friendship

For Addie who taught me grace, Maureen who embodied tenacity, Jan who pushed the boundaries of life and Aunt Faith and Aunt Gayle who lived valiantly and were gone too soon.  I love and miss you all.

Today marks World Cancer Day.  Lung cancer bloggers are honoring survivors everywhere, to view all stories the link is here. I choose to celebrate the lives of friends passed and living by sharing what I’ve learned from our interactions.  Cancer know no boundaries. No social class or convention. No gender. No age.  It simply is.

There is something about the phrase “You have cancer”, any cancer, that knocks your knees out from under you and causes gravity to fail.  Things spin on at their own pace, and on their own axis. Staging, typing, mutation testing, CTs, MRIs, bone scans, blood tests, ports and more.  At some point a cancer diagnosis limits ones options for the future and no matter who you are or which cancer you experience you fight like hell to reclaim that life.  Stage and type are irrelevant.

Attending a survivors support group at the Cancer Support Community opened my eyes to the universal fears and anxiety that come with cancer.  Recognizing that, I found an easy and instant kinship with survivors of other cancers. Its a bond formed of our shared experiences.  Chemotherapy, radiation and surgery take their toll on all patients.  Side effects of treatment are based on the chemo agent used not the location of the primary. Cachexia is cachexia.  Neuropathy is neuropathy.  Tinnitus is tinnitus.  Scanxiety is scanxiety. Stage and type are irrelevant.

We all experienced people we thought to be fair weather friends stepping up to help us through some of our toughest challenges while that we lost friends and family who were terrified by that ‘C’ word.  We all have a deeper appreciation of waking to a new day.  Then there’s the shared awareness that life really does go on, it doesn’t wait till treatment is done and we’re ready to take on new challenges.  Most important, we get time to make wonderful memories with family and friends that will last their lifetimes.

One very important event for me was meeting Addie, a stage 4 colon cancer patient who had been her mom’s caregiver through her colon cancer treatment and hospice.  Here was another daughter who understood what it’s like to bury a mom who shared the same disease.  When Addie went into hospice it was a gut wrenching experience.  In the last days before her passing the FDA approved a drug she had been anxiously awaiting and had been denied compassionate use for.  Reflecting on her calm and grace I am humbled and brought to tears.

Since that day many other friendships have grown out of those shared experiences.  Lung cancer expanded my world in ways I never dreamed.  I met Elise, a 2x breast cancer survivor, who became one of the best friends you could ever want in your corner.  The summer after Addie passed Elise needed knee replacement surgery and I volunteered to drive her around.  Her family came from Europe to help her with the house and yard work and I was always the driver when it was time to explore museums, parades and festivals.  Her family is as warm and friendly as Elise and I had an invitation to spend the Christmas holidays at their home in Luxembourg.  It was a once in a lifetime trip.

My world expanded even greater when I built relationships with other survivors on line at websites that I learned to trust.  For lung cancer patients that would be LUNGevity.org, Inspire.com or the Lungcancerfoundation.org (the Bonnie Addario Foundation).  For those of you on Twitter I recommend the tweetchats at Lung Cancer Social Media -#lcsm.  I’ve had the opportunity to meet many of my on line acquaintances at conferences in real life and found friendships that endure.

Cancer never really limited my world, it opened it wide.

 

 

 

 

Why Such an Amazing Outcome?

Recently my friend Cynthia wrote that in a consultation with University of Colorado’s lung cancer guru Ross Camidge, MD, she was informed that the 5 year survivorship rate for stage 4 lung cancer is now 2%. In a recent blog my friend Linnea Olson revealed that when she was diagnosed 11 years ago, the 5 year survival rate was 1%.  In 11 years survivorship has doubled. Honestly?  That’s not much improvement but I am thrilled to be in that 2%. My question though is ‘WHY’?  There is nothing special about me.  There are no mutation testing or maintenance chemo.  How it is I’ve survived to become one of the 2% of patients who survive this long?

My cousin Deb Letterman is my primary caregiver and an RN. I asked her why she thinks I’ve made it this far. Her answer? My attitude. She remembers things from the very beginning of this journey, things that I was too sick to remember. “You had the attitude that, okay, this is cancer, you couldn’t be cured but you were going to live the very best life that you could. You took care of the dead stuff and focused on living”.

That’s only part of the equation. And its true. When first diagnosed my oncologist told me I might survive 10-15 months with treatment. When Deb and I went back to see him the second time we were laughing and joking. He was a bit taken back I guess because he suggested maybe we didn’t hear what he had told us. I recited the statistics he shared and informed him that with that information I went out and paid for and planned my cremation and memorial service. I established Deb as my Durable and Medical Power of Attorney. I arranged for distribution of my belongings. I was done with all of that death and dying stuff and planned to focus on living. He must have approved because in 5 years he has never foisted me off on his Physicians Assistant. He always greets me with a big smile and wants to know what I’m up to.

I dug back in my memory to remember how my mom made a point of looking for beauty in the natural world and how she embraced the beauty she found. It helped her tremendously to focus on the positive things in her life in the brief 4 1/2 months she had between diagnosis and her death from the very same adenocarcinoma I have.  It taught me that it’s easier to focus on the positive and far more rewarding. Finding the silver lining in any cloud became my specialty. Letting go of old grudges and anger made life more pleasant.

Another piece of survival came from the care I received, first from my medical team but more importantly from my caregivers, family and friends. When Deb or her husband David Letterman couldn’t be there my sister Jan Krist-Finkbeiner, my brother Dan Cutlip or my friend Carole Claire spent the night on my couch making sure I took my medicines as directed and that I didn’t fall and injure myself when I was so deeply fatigued from the combined chemo and radiation.

Later, other challenges to my health arose, my family was on the spot getting me into the ER or urgent care. Only once did I think “Uh oh. This is it. I’m going to die now.” I’d remembered reading that most people die from side effects of cancer treatment and this might be it. That was when I experienced a rapid increase in the size of my pleural effusion and developed a pericardial effusion. My family got me to the ER as soon as I mentioned shortness of breath and a pain in my shoulder. Their fast action got me in and prevented serious heart damage- perhaps even death.

As I start getting back into parts of my former life I was often greeted with the words that acquaintances thought I was dead and tell me I’m a walking miracle. I smile and tell them yes. I tell them that God answers prayers and I am living proof of that.

Connecting with others who had cancer made a huge difference. Especially other lung cancer survivors. They taught me that I am still a valuable person and that no one deserves cancer, smoker or not. With that I was able to let go of the guilt I carried for believing I’d brought this on myself. I was able to forgive myself and really focus on the business of living.

There’s no possible way to know if any or all of this contributed to that exceptional 2% survival status I enjoy but I embrace it.

About the picture: My sister Jan is on the left, my cousin Deb on the right.  We were at a Tiger game and the home team came through that day..

 

 

The Spider in the Corner

“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.

So reads the Bene-Gesserit ‘Litany Against Fear’ in the Frank Herbert novel Dune.  Lung cancer taught me deeper meaning of these words. What it means to face fear and to let it pass through leaving a stronger individual behind.

Lung cancer patients confront fear daily. Eventually it becomes an old friend, one you can pick up and, sometimes, put down. But for many, fear of the cancer is just below the surface. Its a web of fear. Fear of the unknowable and unthinkable. They need to be reassured that the maker of that web cant bite them. The spider in the corner can catch anyone in its web.

“The spider in the corner”, that’s how my brother’s friend broached a conversation about my lung cancer. His demeanor said he was sincere about wanting to understand but that he lacked the objectivity to ask about it directly. Because he is afraid of spiders. Because he is terrified of lung cancer. For him, asking how I lived with that spider in the corner was easier, more ‘comfortable’.

“Denial” was my first response. I live in denial, if I thought only about the weight of cancer on my life I might break under it. Get wrapped in it’s sticky web. And so I live in denial of what a stage 4 lung cancer diagnosis might mean. Let me clarify this though. Denial is not 100%. Long term effects from the disease and the treatment limit much of my body’s ability to do things I previously did without thinking. That’s a big spider that shadows me everywhere.

In order to live my best possible life I have to accept that the spider is, and always will be, there. I’ve accepted that its cancer and it sucks. It will rob me of my life soon enough. I don’t have to rob myself of precious hours, days or years by dwelling on how rotten it is. Time given over to the spider is time I can’t get back. Time spent blaming the spider and decrying its bite is time I can put to use living.

“Reaching out to help others who have been newly diagnosed helps me take my focus off my own cancer,” I explain to him. In the process I’ve come to understand the spider better and, in understanding it scares me less. It will always be there but in educating myself, a light is generated. A light that holds back the dark webs of fear.

“Did you smoke?”, he asks.
“Yes,” I tell him, yes.
“Oh, I don’t, so the spider can’t bite me. ”
“Wrong.”
“Only if I’ve been exposed to second hand smoke”.
“Wrong,” I say again. “Not necessarily and not necessary. The spider can get anyone”.

We talked about other misconceptions surrounding the spider and its web. That only smokers get them, that people who don’t smoke can’t get them, that young people can’t get them, that there is no hope for people with spiders-ever. That eating organic and staying in excellent physical shape will prevent lung cancer. That smokers deserve cancer. Misconceptions. All.

That spider can crawl into anyone’s corner. Anyone with lungs that is. That doesn’t automatically mean that the bite has to kill right away. Some of its victims survive,. some even physically unscathed. Others get wrapped in its web and smother to death. The disease is bad enough. I don’t have to wrap myself in it’s web.

Lung Cancer has taught me a deeper meaning of those words of Herbert’s fictional Bene-Gesserit. I’ve confronted my spiders. I faced my fears of lung cancer. I let them pass over me and through me. When I turn to look with my inner eye, only I remain.

For today.

Surviving It

Who knew that you could live longer than a few months with lung cancer? I certainly didn’t. Both of my parents died of it within a few short months of diagnosis. My father at age 41 with mesothelioma, my mom at age 75 of adenocarcinoma. My adenocarcinoma diagnosis came in October of 2010, my prognosis was not great, with treatment I could expect to survive 10-15 months. Never in my wildest imagination did I think that could be wrong.

My priorities when first diagnosed were to:
1-Survive at least 6 mos.
2-Learn what I could to preserve quality of life.
3-Make arrangements for burial.

No one prepared me for the possibility that I might live.

In the process of achieving priority #2, I learned a great deal about survival rates, research, the stigma, my family, friends and myself.

What surprised me the most was that, despite the fact that more people died of lung cancer than the next three most common cancers combined, fewer funds were allotted for research.

With the time I believed I had left I made a conscious decision to help others deal with the shock of diagnosis and eradicate the stigma which I believed would lead to an increase in funding for research. In the process I joined a couple of online support groups. I learned how to vet the information I was getting from each and discovered a few patient centered websites that I came to trust.

Through them I made personal contact with a number of survivors, caregivers, caretakers, activists, bloggers and an array of wonderful, amazing people. (One man in particular who had survived stage 4 lung cancer for 13 years and is still going strong at 17 years.) I found something that I never expected. I found hope.

To achieve my stated end, I actively promoted the blogs and activities of lung cancer survivors who never smoked. Eventually I came to understand that in doing so I was perpetuating the stigma. I choose to begin blogging to give hope to patients like me.

Welcome to my blog.
Welcome to hope.