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.
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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.)