A Cautionary Tale 

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.

Channeling My Inner Twinkie

In a conversation with a couple of friends who are also long term survivors of their cancer, one friend announced that she is a ‘Cancer Twinkie’.  I tried not spray anyone with my coffee as I laughed out the question ‘Wha…,Why?’. A statement like gets everyones undivided attention.  

She’d been wrestling with the dilemma of how to refer to herself. Terms like warrior and survivor have military connotations. They indicate that someone was in a battle for which there is no clear winner. She felt like neither a survivor nor a warrior and, like many other cancer patients, resented these descriptive identifiers.   

In a moment of bemused clarity she recalled that Twinkies have expiration dates but they remain fresh and tasty long past that expiration date. She herself had outlived her expected expiration date by several years and was dealing with her cancer as a chronic disease. Ergo, she was like the sugary sweet sponge cake treats of her childhood, and had came to think of her life trajectory like that of a Twinkie. 
Me? I think of myself as a cancer thriver but am adding the term ‘Cancer Twinkie’ to the special vocabulary that includes the word ‘Scanxiety’ and I’ve ordered a T-shirt that proudly proclaims my status.  
Twinkies is a registered trademark of the Hostess Corporation. 

In Your Face, Hobbes!

So here I sit, appetite sated in the company of friends old and new. Dinner tonight was Chinese which I ordered in French. Amazingly enough I got just about what I was expecting.   
Did I say old friends? Elise (Erny) and I have been besties for a couple years, bonded by our cancer experience. The old friends are from her childhood. Women she and her sister, Helene, used to play with in the streets of Luxembourg in the 50s. 

As the conversation swirls around me I pick up bits and pieces of the conversation- funny how English idioms sneak into their conversation. Throw in my grade school and college German with my high school French there are times I pick up on the conversation correctly (Luxembourgish is heavily influenced by German and French).

Helene Frisch-Helllenbrand.      Photo by DeniseCutlip

Many times this last month I find myself amazed that this is my life. When first diagnosed I expected my life would be like that which Hobbes talked about in the Leviathan. I would be without a social contract (friends) and my life would be nasty, brutish and short. Boy, was I wrong.  

No, I’m not going to blow smoke up your patootie, it’s not easy, and for some he was right on the money, but not for me. Do I count my blessings? You betcha! Do I sit at home waiting for life to happen? No way! More than ever lung cancer has taught me to take control of my life and run with it.  

Waiting for our plane.  Elise ‘Erny’ Smith on the right.                      Photo: Denise Cutlip

In a move, beyond generous, Elise’s sister bought tickets for the two of us to visit her in Luxembourg. She wanted to spend time with her sister and I being rewarded for being a friend who drives when she needs someone to stick around when she has medical treatment. We are spending the month of June at Helene’s home. With that as our home base we have made forays into Belgium, Germany and France.  

How did this amazing ride come to be my life? And so I find myself walking through wooded hills, high above th Moselle River picking and eating wild cherries. Greeting people in a language I barely understand. The paths I walk were not unknown to envoys of the Holy Roman Empire.  
In Bastogne Belgium I walked paths used by ghosts of soldiers lost in the Battle of the Bulge. Forever young, they gave their lives to defeat one of the most oppressive fascist rulers of the 20th century.  

Photo: Denise Cutlip


Photo by Denise Cutlip

In Germany we shop for chokolat to take home to family and friends in an Aldi’s that only slightly resembles the one near my home. Here I am enticed to by cuts of meat I do not know and fruits I have only eaten in dried or jellied form. Flowers, too, Edelweiss I know from the ‘Sound of Music’.  
It’s been an amazing time!

Photo credit:Renee Marbach
Photo by Renee Marbach 

Thriving Along Recovery Road 

It’s hard to gain perspective of just how far you’ve come along Recovery Road. Odder still is trying to remember back when you were at your weakest and quantifying the steps that brought you to the best possible you that surviving   
There were small victories and great celebrations along the way. Finishing emptying the dishwasher, doing your own laundry, opening a pickle jar by yourself, walking a mile, swimming again, baking a quiche and riding a bike all seemed like great milestones. But the better measure (for me) is feedback I receive from friends.  


In 2014, when I visited Luxembourg for Christmas, I thought I was doing very well. We toured WW2 battle grounds, visited my friends family and took walks along the Remich Esplanade. We went to the Christmas Market one night and out clubbing another. I was cruising.  


This summer I am back. The first few days of the trip have been a whirlwind of friends, food, music, cocktails and shopping. Not a surprise right? Wrong. I thought my strength peaked in 2014 and that I’ve been maintaining well. So far the trip has been spectacular but hearing from those I’ve not seen in a couple of years that they are pleased to see that I am so much physically stronger and mentally alert has been an eye opener.  

Life doesn’t peak for cancer thrivers any more or less than for anyone else. We continue to grow and to stretch in new directions. If you’re really lucky you are surrounded by people who love and care about you. I’m very lucky.  

Pictured: 

The Remich Esplanade with the Moselle River and Nenneg, Germany in the back ground.  Wine country for sure!

My friend Elise Smith (a two time breast cancer thrives) and I waiting to board a plane.  Luxembourg bound. 

Ice cream, beer and beverages at a sidewalk cafe with Helen Frisch Hellenbrand, her granddaughter Sophie and Elise Smith. 

An Edith Piaf – Jacques Brel Tribute Show.  

Helene on her patio with two of her grandkids.  

Elise’s cousin Renee Marbach and Elise enjoying a family moment.  

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.