Joint Statement on Triage Considerations for Lung Cancer Patients
Upstage Lung Cancer is a member of LungCAN—a collective of lung cancer organizations all across the U.S.
As you know, we are in the midst of a crisis that threatens to impact our lung cancer community extremely hard. Many in our community have raised justified concerns about how they will be treated in the event of triage situations when there aren’t enough ventilators or other medical supplies for those who need them. Recently, leaked triage draft guidelines circulating on the internet have suggested that, in a triage situation, a diagnosis of “terminal” cancer would likely be a disqualifying factor for lifesaving access to care, even though we all know many survivors who have been given that diagnosis and are living and breathing among us many years later. Triage is an ugly reality, but we do not believe such crucial life and death decisions should be based solely on an advanced cancer diagnosis.
Our community is in great turmoil and distress. Our ability to change the situation is limited. Here’s what we can do.
LungCAN has developed the statement in the linked document. It lays out relevant lung cancer facts and implores triage officers to consider more than just the lung cancer diagnosis. To be clear, this letter does not request any ‘special favors’ for lung cancer patients, or that they are automatically moved to the front of the line; only that their diagnosis not be the sole reason they are excluded from lifesaving care.
If you have concerns that you may need to advocate for yourself in the event of a shortage of medical supplies, there are a few things you can do:
- Print a copy of this joint statement to present to a triage officer in the Emergency Room.
- Carry a copy of your medical records with you, OR, even better, ask your doctor if they will write a very short (2-3 sentences) note that explains a little more what your cancer prognosis is. One possible factor used in triage is the ‘life-years’ that might be saved, so it might be helpful if you are stable and have a reasonably good prognosis.
- Talk to your doctor now, before it’s a crisis, and explain your concerns, and thoughts and seek their advice.
This is an unprecedented time, with complex considerations, and so many unknowns. Will I get sick? Will I be seriously ill, or will it be a mild cold? What if there are equipment shortages? What if I’m recommended for ‘comfort care’ only? We encourage you to think through these issues, discuss them with trusted friends and family, and carefully consider your own preferences. Here are a few links that might be helpful as you consider these things.
- Applying HHS’s Guidance for States and Health Care Providers on Avoiding Disability-Based Discrimination in Treatment Rationing – An excellent guide for medical care providers on complying with federal disability rights laws in developing treatment rationing plans and administering care in the event of a shortage of medical equipment, hospital beds, or health care personnel.
- COVID-19 and Anti-discrimination – An update from the GO2 Foundation for Lung Cancer that talks about what they are doing to address these community concerns.
- COVID-19 and Lung Cancer – Accurate, up-to-date information from LUNGevity on COVID-19 and how it affects those with lung cancer. Also includes a link to Breathe Easier – An Emergency Response Fund for COVID-19.
- Coronavirus and Lung Cancer – a great resource from the GO2 Foundation for Lung Cancer with helpful information for patients, providers, and advocates.
- IASLC’s Guide to COVID-19 and Lung Cancer – An insightful collection of patient and member experiences with COVID-19
- On COVID-19, Ventilators, and Triage – blog post by Janet Freeman-Daily, Stage IV Lung Cancer Survivor and Passionate Advocate.
- The Conversation Project – a helpful resource for considering and talking about end of life care.
Know of a resource you think we should include?
The Relaxed Hostess
Cancer crashed my party more than fourteen years ago. The guest from hell. Uncouth, unkempt, possessed of a nasty disposition and with no respect for boundaries. Lousy fucking company.
And then there was the matter of an underlying agenda: this guest intended to kill me. To say the ensuing relationship has been uncomfortable is an understatement. And all attempts to evict the interloper have ultimately proved unsuccessful.
Yep. Chances are cancer and I are in this for the long run. At times I think the only remaining question is which one of us is going to burn the house down first.
Now, with no shiny new weapon to pull from the arsenal, I have had a lot of time to reminisce about previous treatment modalities. Cutting, chemicals and more chemicals. In the process I have lost hair, teeth, toenails. My skin has erupted, my esophagus bled. Sometimes I have not recognized who I had become, inside or outside.
Throughout it all I have viewed myself as a warrior, my body the battleground. Fighting, always fighting.
A few months ago I decided that perhaps it was time to try another approach. I would listen to my body, talk to my cancer. “I go, you go,” I said in a reasonable tone. “But it doesn’t have to be this way.”
I’d like to tell you that my cancer perked right up, slapped itself on the forehead and told me it didn’t know what it had been thinking. Apologized for the selfishness, the nihilism, all that stress it had put us through. That now that it had seen the light, it was going to just pack up and go home. Mea Culpa.
But of course that’s not what happened. And I also discovered that my own sense of antipathy overwhelmed any sort of pseudo empathy I might be trying to pull off.
When all was said and done I realized that there was only one thing left to do. I would decide, yes decide, to simply ice cancer. Just like that. “Cancer, you’re dead to me.”
You know what? It’s working. My stress level immediately plummeted. Already familiar with the fact that not giving a fuck can be a super power (really truly) it simply hadn’t occurred to me to stop caring about cancer.
I had scans last week, a review two days ago. And even though the historical precedent has been that once progression starts, it just keeps going, I felt calm, cool and collected. I already knew. My cancer is stable. STABLE, Y’ALL.
We’ll discuss this further. But in the meantime, think about it. Pretty much everyone with cancer is stressed out all the time. 24/7. Can’t be a good thing.
What I’m doing now—deciding not to care—isn’t just some simple party trick. It takes determination and a strong, strong will. But the positive feedback was instantaneous once I figured out how to let go of the stress. Give it a go. Even if for just a few minutes or an hour or two. And then see if you can do it longer.
I am not cancer free but then again, I am cancer free insomuch as I am anxiety free. And I will wager that is bad for the cancer and good for me.
In the Fall of 2006, I bought a pair of green sandals with a cute kitten heel. I enjoyed the color and style and made sure they were comfortable, but it never occurred to me to examine the sole. Several days later I put them on and headed down my basement stairs. One step onto the threshold and out went my feet as though I’d stepped onto ice: one foot went back and the other scraped the wall in front of me. Fortunately, the basement stairs are very narrow, and I was able to catch myself by grabbing both walls of the passageway.
Thus, began an astonishing journey. After my narrow escape, I felt fine, except for some discomfort in my left wrist, elbow and right ankle. I figured I should check myself out, primarily for the twinge in my left forearm. So, I began with a referral to see a hand surgeon who wanted to give me cortisone injections, but she wasn’t sure what site to use. Next, another hand specialist who wasn’t sure the problem had to do with my hand – maybe it was tennis elbow? My referral was to a neurologist to confirm a diagnosis, but he only tested my wrist and not my elbow. He concluded there was no nerve damage in my wrist and ordered an MRI to see if I had a pinched nerve in my back. The MRI came back. It showed no pinched nerve – but it picked up two tiny spots on my right lung. My internist sent me for further tests and an eventual biopsy. The diagnosis: lung cancer!
Fortunately, my internist sent me to a top-notch surgeon, Dr. John Wain, at Massachusetts General Hospital who scheduled my surgery for three weeks later. Because of my early diagnosis, he was able to remove just the two small tumors in two lobes and a small section of tissue around the sites. They were small, early stage, and contained – they hadn’t spread. My oncologist, Jennifer Temel felt I didn’t need any further treatment as did her colleague, Dr. Tom Lynch, Chief of Thoracic Oncology. My internist reflected on all the events that led to this fortunate outcome and said to me, “Somebody up there really likes you!” I went home from the hospital to recuperate.
Most people would say there’s nothing fortunate about getting lung cancer. In fact, it was horrifying, shocking and upsetting to wrestle with the diagnosis and try to figure out what it meant for my life and life expectancy. As I came to terms with it, I also found that the experience gave me a different level of awareness of how lucky I have been. My husband, Richard and daughter, Micaela went to all of my doctors’ visits with me. My son, David, and his wife, Amy, arranged for food to be delivered. My daughters, Claire and Robin, came from San Jose and Chicago to nurse me in the hospital and when I came home. My dearest friends rallied to help me in every way possible, from researching the latest treatments and outcomes of lung cancer to bringing me dinner and keeping me company. Their extreme kindness made me vow to be a better friend to someone in need. So many people expressed concern, good wishes and a desire to be involved and updated about my recovery. I was so moved by how connected all of our lives are, even extending to good people we’ve never met.
All of us know someone who has had lung cancer. Most of us have stereotyped lung cancer: I know I have. It seemed like a disease reserved for elderly men who smoked for a lifetime. This isn’t true. It can happen to any of us. This disease touches all of our lives. It might be a member of your family, a friend or a neighbor. Perhaps you are a survivor. Or, perhaps its someone you feel you know. Did you experience the same shock and unfairness I did when learning that Dana Reeves, a young non-smoker, died after years of heroically caring for her husband Christopher Reeves following his riding accident? Perhaps after inviting Peter Jennings into your home every evening to bring you the news, you too were surprised by his illness and death. Remember how charming and funny Suzanne Pleshette was on The Bob Newhart Show? For me, no one had a voice like Beverly Sills. All of these well-known celebrities suffered and died from lung cancer.
That’s why early detection is so important.
In the days after I came home from the hospital, I worked to get my strength back. I did laps around my bedroom for exercise. I used my recovery time to reflect on my life, on what was important and how to spend my time. I found inspiration through a book recommended to me by a tour guide, Tolga, whom I’d met while on vacation in Turkey. I emailed him about my lung cancer. He wrote back, quite unsentimentally, and said to read The Alchemist, a fable by Brazilian author Paulo Coelho. It’s a book about learning to read the omens strewn along life’s path, and, above all, following our dreams.
This wise guide said it was for me to make something of my experience. After I finished reading the book, I realized that the key point was about transforming commonplace events into something of value, making something of each and every experience. This message spurred me to think about how I could find a way to make something worthwhile and life affirming out of having had lung cancer, an experience that on the surface was of no value whatsoever.
The answer was Upstage Lung Cancer.
Creating Upstage Lung Cancer
My life has been about caring for people and bringing joy into their lives when I can. I have two professions. I am a clinical psychologist and I am a professional singer. As a psychologist, I have the honor of being invited into people’s lives and connecting at a deep level. As a singer, and a member of The Follen Angels (my jazz/cabaret group), the music is also about making meaningful connections. Our group has so much pleasure creating music together and then sharing our programs with enthusiastic audiences. Music ignites deep feelings and often, important memories. For me, music is life affirming. It’s therapeutic. Could I turn these skills and interests into something that could make a valuable contribution to raising awareness of lung cancer and its serious consequences, while supporting research on early detection and new treatments for this dreaded disease?
The birth of an idea
My reflections led to ideas about creating a musical theater event that could be used to raise money to benefit lung cancer research and raise the awareness of our cause. I began to conceive of a show to feature the great showman, Florenz Ziegfeld. I called my writing partner, John Lamb and asked him if he’d be willing to put our current project, a mystery novel, on hold to help me finish writing a musical theater show I’d begun called, Ziegfeld! He too was enthusiastically on board.
I met with nationally renowned Thoracic Oncologists Tom Lynch, MD and Jennifer Temel, MD at Massachusetts General Hospital Cancer Center in Boston, Massachusetts. We discussed the exciting and innovative research going on at the Massachusetts General Hospital Cancer Center looking at early detection and new treatments for lung cancer. I told them I wanted to use the Ziegfeld! project to raise funds to support these kinds of research.
I reached out to my friend, Crispin Weinberg, and then I contacted Susan Gessner, who had been diagnosed with lung cancer six months earlier, and at a very early stage, too. Together, we created Upstage Lung Cancer. Susan agreed to serve as President of the Board of our non-profit organization. Our friend, Melissa Langa, an attorney, volunteered to help us with the papers and we submitted the application in August, 2008. From there, we contacted a group of dear friends with exceptional abilities and talents and asked them to serve on the Board of Directors of our new organization. We held our first Board meeting in September. Each member brings particular areas of expertise and energy to make us an effective, think-outside-of-the box organization. We also asked Tom Lynch, MD, Jennifer Temel, MD and John Wain, MD, all outstanding specialists in the field of lung cancer to serve as a Medical Advisory Board. They each accepted with great enthusiasm.
Our Board of Directors agreed with my vision that we could do more if we created other shows as we work on producing Ziegfeld!. In October, 2008 we had our first fundraiser, a cabaret/jazz concert in a private home. The evening included a jazz performance by the Follen Angels, and a very inspirational talk by Dr. Jennifer Temel. Dr. Temel discussed the status of lung cancer and her own work on the psychological aspects of living and dying with the disease. The event was a tremendous success, and we planned a second, similar program on March 29, 2009.
I continue to be thrilled by the outpouring of help from professionals who volunteer their time and help. Robin Friedman, of Visual Velocity, continues to creative our innovative website (In 2020 we have a brand new, exciting updated website!). Al Davis, also of Visual Velocity also videotapes all of our concerts; Bob Bond consistently dazzles with graphic designs, and so many other wonderful volunteers help to make Upstage Lung Cancer succeed with our mission.
The fact that I have had lung cancer is ever-present for me. My annual CT scans are wonderfully reassuring yet terrifying to anticipate. There is always that, “What if…?” fear.
But, instead of focusing on “What if?” I want to put my considerable energy into producing our original Ziegfeld! show. We were all set to bring it to the theater in May, 2020, but the Covid-19 pandemic put a stop to that for the time being. Over the past 12 years we have held annual concerts with Boston’s best, award-winning performers, hosted each year in the Fall by A&E Critic Joyce Kulhawik and in the Spring by WBZ-CBS radio personality, Jordan Rich. With the limitations posed by current Covid-19, we will not be stopped. I’m finishing a production of a virtual mini-concert to keep music and our mission alive. We will continue to use music and the performing arts—the elixir of life—to fight lung cancer. We’ll raise our voices to say: “Research matters. Lung cancer won’t wait.”
We won’t stop until we upstage lung cancer!