One of the Few

Seven. S.E.V.E.N. 7. SEVEN!!!!!
It’s officially 7 years since I received my preliminary diagnosis of lung cancer.

“Ms. Cutlip, the results of your X-ray are in. You have a very large mass on your left lung. Due to the size and location of the mass there’s little doubt that it’s cancer. We are going to admit you and do some diagnostic testing. ”

That’s pretty much how the initial conversation went. The rest of our visit was comprised of what could be done short term to make me comfortable while they found me a room.  As I’d been sitting in the Emergency Room for over 8 hours I asked for and received a sandwich (turkey-dry) delivered by the doctor himself.
Did I need anything else?, he wanted to know. I asked for a favor. I could see him stealing himself for a question he didn’t want to hear or answer.

“Could I get a nicotine patch?”

That caught him by surprise, he told me most patients requested a moment to go outside and have a last cigarette. He could not recall the last time, if ever, a patient asked for a patch first. When he told me that he said “with that kind of thinking going in you may be one of the few that go on to beat this.”

It never would have occurred to me that someone could survive lung cancer.

The following week was a blur of tests, 2 needle biopsies (one lower left, one upper right), a CT, bone scan, MRI of the brain, a power port placement, pulmonary function test. The PET test necessitated a vaginal ultrasound and a thyroid biopsy. Through it all I hoarded the ER doc’s parting words…”you may be one of the few…..”.

There’ve been many milestones in the past 7 years.  The two that meant the most to me were at 2 years and again at 5 years.  At two years the probability that I might live 5 years went up exponentially. At that time the five year survival rate for stage 4 patients was 1%. …..one of the few…..   At five years the survival rate for stage four doubled to 2%. In the last two years it’s more than doubled to about 4.6%. I remain “..one of the few..” but our numbers grow. Too slow.  Much to slow.

Tonight I cherish the memory of that doctor’s words even as I recall the dread I felt when he delivered that diagnosis.  These pictures are some highlights of the past seven years.

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You bet I’m celebrating but I do not forget for a moment that my story is unique. Every day 433 people die from lung cancer. 433. That’s a jumbo jet filled with passengers falling out of the sky every day. Lung cancer is a national emergency. Please join me and my friends in Washington, DC on November 2 for the Life and Breath Rally.  This is a grass roots effort and is being held independent of any formal organization. We are looking for equity in research funding.  Lung cancer is the number one cancer killer yet it receives the least funding of the top 4 cancer killers.  No one deserves cancer.

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A Cautionary Tale 

Ignoring the other ‘Findings’ on your CT could be deadly.  As an advocate I am always telling people to collect copies of every test, every report, every piece of medical information generated about you, your disease and your treatment.  With each follow up CT I happily accept my copy of the report and skip down to the section that indicates findings and impressions and read what my oncologist just told me, ignoring the rest can be deadly.  A recent medical scare taught me an important lesson.

At what was supposed to be my ‘last ever’ PAP test my gynecologist discovered some cells in the cervix that might be a precursor to endometrial cancer. This prompted an ultra sound and a biopsy. The biopsy, which was done in his office proved to be inconclusive. So a second biopsy, a hysteroscopy and a D & C was performed at the hospital. Fortunately, that biopsy proved negative.  But what was perhaps not such a wonderful outcome was that the following day I experienced dizziness, nausea and blurry vision.

A friend drove me emergency department. In the ED the doctor ordered a CT to rule out a pulmonary embolism or progression of the cancer. Good news! 1-No pulmonary embolism; 2-post therapeutic changes of the lower left lobe are similar to previous. There is no evidence for lung cancer recurrence when compared to previous. 3-Aneurysmal dilation of the ascending thoracic aorta is stable and does not show acute complication. Patient is dehydrated. Whew. A relief.

Wait. What?
Aneurysm? What aneurysm? Ah.ah.ah.

No one has ever said anything about an aneurysm before. Reviewing the document the doctor told us that it was in previous CT reports. I went home and beat myself up. How could I have ignored such a finding? I would never have ignored it! Those reports are the reason I knew there were signs of emphysema and requested pulmonary rehabilitation. How did I miss this when reviewing my my reports? How? My cousin Deb and my sister Jan had attended every appointment with me. THEY never heard it either.

Self flagellation is never productive to the body or mind. Action is called for. Aha! I remembered I had CT reports going back 6.5 years I would learn when this newest condition manifested that way.

2017-CT to rule out cancer progression and pulmonary embolism- The thoracic aorta is tortuous. The ascending aorta measures up to 4.8 cm but show no dissection or acute complication. Is similar to previous. (Previous? What previous?)

2016– nothing x2 (Shows on CT but not remarked upon or noted-surgeon showed it to me)

2015– nothing (normal aortic arch) x2 CTs

2014– still nothing x2 CTs

2013– nothing x3 CTs, 1x CT mild dilation of aortic arch.  Okay.

2012-nothing x4 CTs

2011-nothing x4 CTs

2010-Oh, my initial CT says mild dilation of aortic arch.  (What the what?) Is that the same as an aneurysm? (It is. It really is).

Fast forward a couple weeks. This is scary shit. Every bit as scary as cancer and I have to digest this privately. Also, I want to meet with the thoracic surgeon and learn more before I blog.

This week: No recriminations,  I just want to know where we go from here. Where the Medscape paperwork the ED doc gave me said that at the size of my ascending aortic aneurysm (4.8 cm) it should be examined by a thoracic surgeon, the thoracic surgeon says based on my height we can let that go until it reaches 5.5 cm. before surgery is warranted.  He wants to avoid surgery as long as possible, With my medical history it’s much more difficult.

My history? Stage 4 adenocarcinoma with primary on the left,  mets to right lung (maybe second primary),  mets to the visceral pleura, lymph node involvement throughout the center of my chest (mediastinum and hilar nodes).  Combined chemo and radiation for the lung cancer on both left and right sides of the lung. A left side breast cancer for which I received radiation, pleural and pericardial effusions (fluids in the sacs that surround the lungs and heart -preventing them from working to their capacity-can crush the organs), and pneumonitis.

Apparently, all that left side involvement and radiation has caused scarring and managed to fuse the organs to each other making this surgery riskier for me.

Pictured two awesome caregivers-Deb Letterman and Jan Finkbeiner
In the meantime? We play the same game I’ve been playing with the lung cancer for the past 6 years ten months.  Its a game I’m very good at.- the old Watch and Wait game. There will be CTs with contrast every six months until it’s big enough that they are forced to do surgery or I have a massive heart attack manage to live long enough to make it to the hospital to have it surgically resected.If I am allowed to choose between dying a slow painful death from cancer or a swift painful one from the aneurysm, I’d prefer the quickest route. My life the last couple of years has been productive and interesting in ways I might never have dreamed. I’m just not ready to die yet and I don’t plan on going anytime soon.From now on every word gets scrutinized, even those that have nothing to do with lung cancer.

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.)

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

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..