Redefining My Purpose, My Life

Advocacy takes many forms and I’m still learning to define myself and my role.  In the early phases I was going to set the cancer world on fire.  I would educate the masses and make them understand that no one deserves cancer-tobacco or not. The eloquence of my testimony before congress would have them throwing money at lung cancer research.  In reality, that’s just not my skill set.

The lung cancer advocacy world is quite diverse.  It’s supportive and embracing.  Hope is found in obscure little corners.  The community is as small and close as your neighborhood and yet it spans continents.  It is a world without flags or borders.   We’re united by words, thoughts, treatments, after effects, side effects and emotions.  When someone has sat you down and in earnest tones said, “I’m afraid you have lung cancer,” your response has nothing to do with language and everything to do with a new language.  The fear and shock of this diagnosis permeates every culture.

In the beginning I dealt with this by learning everything I could about treatment options and shared that with others on patient boards.  I connected with some amazing people.  One group, small in number but large on advocacy raised seed funds to begin research on their next line of treatment when they learned that no one was pursuing anything for their ROS1 mutation.  They found a partner in the Bonnie Addario Lung Cancer Foundation who stepped up and found other resources to partner in that next step research.   Many I’ve come to call friend have spent hours and days on capital hill as citizen lobbyists for lung cancer research.  Still others have addressed the researchers who created the drug that extended their lives.  Patient advocates have participated in, and addressed the annual International Association for the Study of Lung Cancer Conferences (IASLC).

The National Cancer Institute of the National Institutes for Health instituted  policy changes written and recommended by a group of patient advocates.  Obtaining genetic material is one of the greatest challenges for researchers.  That shortage has been addressed, in part, by a patient who helped found a program that collects biopsy slides and medical histories of deceased patients.

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LUNGevity’s Katie Brown and I at my first LUNGevity Hope Summit

Advocacy is not the territory of patients alone.  Many of those who joined in the activities I mentioned are caregivers and family members.  Their impact can’t be quantified.  One formed a Facebook Page for lung cancer survivors and families  as well as raising money for research before merging her efforts with another group and enhanced the efforts LUNGevity a national nonprofit foundation that raises money for lung cancer research.   As social media has gained importance it has become a major resource for all those affected by lung cancer.  In addition to the Facebook Page established by my friend at LUNGevity, there is an a wonderful Twitter page called Lung Cancer Social Media or #lcsm.  Every two weeks patients, patient advocates, caregivers and clinicians share thoughts, ideas, treatment options and trends in lung cancer.  Ideas coming out of this group are helping to shape policy and educate the public.

So where do I fit in?  I’ve been given this longer life and it’s up to me to define it and give it new meaning.  Long term side effects of treatment and an adventurous life style make it difficult to sit or stand for long periods of time so I only work for a few hours before I give in.  Coming from a family that that has long practiced service to community, volunteering at my hospital and my local Cancer Support Community seemed completely natural.   For months now I have served as a Link Navigator, a unique program that was established by my hospital, in part to promote parity in cancer services to all patients.  This week that takes on even greater meaning for me as I become the Link Navigator in our Lung Cancer Clinic.   I will be meeting with patients who’ve just met with their team of clinicians and nurses to learn what their treatment options are.  As I bring this essay to a close I’m awaiting consultation with my first patient.  It feels like home.

(It’s been two weeks since I wrote this.  I’ve no words to describe the gratification this experience brings.  I am grateful for the opportunity to do this.)

Guess who died!  

Near the end of her life my grandmother often greeted us with those words before a ‘Hello, how are you?”, crossed her lips. I resented it. It was a morbid game my 93 year old grandma made us play.  

On reflection, I understand her better now than I ever did. In part because of my own crowding mortality and in part because it’s a conversation I initiate myself too often. 
My choice would be to never have to play it again but I have chosen a path of advocacy for lung cancer patient and their caregivers. This brings hundreds of other survivors into my orbit. I’ve mentioned before that there is a fast bond develops between survivors. Some are faster and deeper than others.  
Every death resonates with me. Each one important to me for a reason. Some much too young, others too old to survive the rigors of treatment. Many had a smaller cancer burden than mine. Others found in the very early stages just don’t make it. I’ve met survivors who’ve made it 25 years.  

There are two deaths weighing heavily on me this week. One pending, one gone. Pending is a woman whose family has decided she should not know how sick she is. Brain metastases left her unconscious for several days. I have been asked not to call or check in because I might give her status away. When we last spoke she could not walk, and she argued constantly with her daughter about food and company. She knows something is very wrong and she is terrified. This, I fear, will not be a gentle landing.  

The second is the passing of a young woman I met at an educational conference sponsored by LUNGevity in April of 2016. At the age of 26 Elizabeth ‘Lizzie’ Dessureault was diagnosed with stage 4 lung cancer, at the time she was pregnant. She began chemotherapy and after the 3rd round delivered a healthy baby. A short time later she learned she had a targetable mutation and for a while her disease was controlled with a targeted therapy. Time ran out for her last week and I can’t begin to imagine the pain her family is experiencing. Lizzie lived life to the fullest making and recording happy memories. Enough to carry her husband and infant child through a lifetime.  
So now I reflect. One life I will celebrate the other I shall mourn. Make your life and death worth celebrating.  

Picture of Elizabeth Dessurauelt courtesy of ‘From Lizzie’s Lungs’ blogpost. https://fromlizzieslungs.com 

More about LUNGevity at: https://www.lungevity.org/

World Cancer Day 2017

Reposting in honor of World Cancer Day, today, February 4, 2017.  
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.

 
 
 
 

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..