This image is from a photo taken by Elliott Erwitt in 1963. I find it gently amusing as well as totally apropos: I’m feeling a bit lost. I had spent the last eighteen months as a poster child for the miracles of modern medicine. The idea for my blog was a logical segue: perhaps I could use my own good fortune to encourage others to have their cancers tested for mutations, and more importantly, to be hopeful. It has been a role I’ve embraced, and in the process I have discovered my inner cheerleader. I’ve even felt a little personally pumped up–maybe this is what it was like to be not just a bench warmer (story of my youth) but rather a bit of a star (damn, I’m good at cancer!)
Well now. Seems I’ve misplaced a bit of my mojo. Unfettered joy has become guarded optimism. I’m still adjusting. The evening before the race in Providence there was a spaghetti dinner and I had been asked to speak. I was precluded as well as introduced by the ever wise and gracious Dr. Alice Shaw. When it was my moment behind the podium, I looked out at all those faces and really didn’t know what to say. I kind of felt like the bad news at the good news party. I came away with the realization that I need to refine my schtick in a way that both embraces realism and hopefulness, because frankly, I’m not comfortable with any other approach.
So here goes. I have advanced, stage IV, or terminal lung cancer. They all mean the same thing. By definition, I have a very serious illness. That is not, however, how I view myself. Just the other day, at a routine colonoscopy in honor of my fiftieth birthday, I filled out a questionnaire in regard to my health. As I was about to pencil in the circle next to very good, I reconsidered and marked good. Aside from the lung cancer, I really do have excellent health. I certainly don’t look like a sick person. That is due in large part to the fact that my lung cancer, although not curable, is currently being managed. Even now, as the cancer becomes resistant, the amount of disease in my lungs is considerably less than it was prior to starting the clinical trial for the targeted therapy that brought me back to this state of health. At it’s apex, I had perhaps a 72% resolution of disease. Now, that number is more like 67 and 3/4%. In the annals of cancer treatment, yet very impressive.
Perhaps I represent what advanced but managed lung cancer can look and feel like. As I get in line for another miracle, it’s not so very different from running a marathon. I’m prepared both physically and mentally to go the distance, but when it gets tough, when I’m tempted to quit, I will think of all of those ahead of and behind me on this course and I will hear the shouts of encouragement from the sidelines. I will know that I’m not alone, and I will keep going. Because just over the finish line is the prize I so covet. Life, sweet life; another morning.
Thank you so much for your latest post. It is exactly what I needed to start my day. I am in the throws of deciding how I want to live my life because I am also in the midst of a divorce while I battle what has been labeled “terminal cancer”. I am trying to remove the word “fight” as much as possible from my daily vocabulary. I like manage, realism and hopefulness much better. Your words were very inspiring this morning and I am grateful for that.
David, fight does just harken back to conflict, doesn’t it. Other terminology and metaphors work as well, and part of how I attempt to heal the hurts is by putting the positive spin on. I’m sorry that you have so much on your plate at this moment, but from the appearance of your blog, you embrace life and that is really the secret. Take good care, Linnea
Oof, that made me get all teary-eyed. I know that there are so many people on those sidelines, screaming for you to make it. And! I now tell every woman I work with that they really need to look up the “hidden womens health risk” report.. and I believe most of them will.
I had a dream last night that you and I were in Japan, shopping. It was pretty amazing. Perhaps as you continue this journey we can go on a trip to someplace like Japan.. Paris.. Morocco… with almost empty suitcases to fill up!
I love you so!!!
You keep up all that chatter Jem–you are a natural born advocate. I like that dream, and your ideas. I have a lot of suitcases…Love, Mom
I am someone who found your blog via the NYTime’s photo essay. You are a beautiful writer; I am so grateful for your ability to brilliantly communicate your experiences and insights through your writing. Thank you.
Michelle in Minnesota
Michelle, thank you. Linnea
I, too, am on the sidelines cheering you on! You know that “will” is an immeasurable attribute in facing this disease. I did speak of you at the LCA NY dinner last Thursday. I spoke to one member specifically who was waiting to hear of a clinical trial as she has the ALK mutation. She wanted to know how I knew so much about it and I told her your story & about the Pfizer trial. You’re in my thoughts and prayers.’
Linnea, that’s fabulous that you were able to pass along some info. Strength in numbers, and personally empowering as well. Thank you for your thoughts and your friendship. Linnea
I love your analogy to your cancer journey as a marathon and I can totally relate (of course!)
Like the marathon, there are moments when you’ll feel like you’re hitting the wall and don’t think you have it in you to go any further, but you do. With the cheerleaders around you and those voices in your head telling you to make it- you keep going. With your “team” – comprised of doctors, friends and family, you have what it takes to keep going, through the pain, over the hurdles and towards the finish line. Sometimes it feels amazing, with the wind on your back and sun in your face. Other times, it seems like it will never end, but you know that if you put one foot in front of the other, the journey will continue and you won’t be given more than you can handle. Your team will be there to support you, even if they have to walk you across the finish line.
Love your blog Linnea. Thank you for sharing “you” with us.
Julia, yes, yes! I had never been involved in a road race before; not even as a spectator. But now I realize what a perfect metaphor a marathon is for cancer–and you are so right about the team. It would not be possible without them. Linnea
Life, sweet life…………and to be alive to see another morning is really the hope for all of us, isn’t it?? We all have only this moment, nothing more.
You run for your life, girl….and never give up. You ARE indeed the new face of cancer. You brighten all our days, with your hope and your smile…and your pure delight at being alive!!!
Pat and Will, thank you. As soon as I met the two of you, I was profoundly aware of your joie de vivre as well. It is a quality I treasure in my friends. Linnea
This was an incredible post, thank you – you bring a graciousness to this fight that is encouraging, admirable and heartfelt.
Thank you Tim–we are in this together. Linnea
Thank you for speaking for so many of us – your eloquence is beautiful! You are beautiful!
It is amazing the fine/blurred line between health and illness – and how easily we pass back and forth almost by the minute….
Thank you Karen. It’s all natural, health or illness, but we humans like to cultivate–so let’s cultivate good health. Linnea
Yes, this is an incredible post. Your experiences and emotions are so universal, but it is ‘you’ who has the gift to express them in such a genuine, truthful and elegant way. Thank you for touching my heart again. You are a star!
Thank you so much Evie. Linnea
Can you hear me holloring for you? Cheering you on my dear friend! You are a true inspiration and as Pat and Will reminded us, We each only have this moment and it is in the moment that we find true joy – love ya
Amy, if you’re hollering, I can definitely hear it. Love you back, Linnea
We are lost with lost drug companie$ and lost bureaucraZies poor allocation of resources to cure Lung cancer, the big killer.
The famous Brazilian oncologist, medicine Nobel price atheist Drauzio Varella said , in portuguese, “Today five times more money is spent in research for male impotence and breast augmentation for women, than the money spent on research for curing Alzheimer’s disease. Therefore in a few years there will be elderly men with big erections and elderly women with big breasts, but none of them will remember what these are used for….”.
He is searching for a cancer cure in the Amazon region, his brother died of lung cancer at 45:
From the Rubaiyat:
You know that you have
no power or choice regarding your fate.
So why should the uncertainty about what
may happen tomorrow fill you with fear? If you
are truly wise, live now! The future?
Who knows what it will bring.
Lets hope is life, sweet life; another spring.
Guillermo, my family now awaits your comments with as much anticipation as I do: I often read them out loud. They are a delightful mix of wisdom, humor, kindness and irreverence. Thank you for your friendship as well as adding yet another facet to this blog (it wouldn’t be the same without you). Linnea
Your story is an inspiration for many. May you beat this beast for years to come.
Suzy, thank you for your kind words. Linnea
Finding your footing is also hard with four feet.
I enjoyed this article about a dog with lung cancer, puppy love and heavy petting:
Guillermo, what a beautiful story. It made me kind of weepy. Linnea