"You have lung cancer. You don't belong here. You gave the disease to yourself!" Those words represent an admonishment bordering on scorn that greeted my first and only in-person cancer support group session. It was fortunately small, populated by ladies, all who had breast cancer.
I smoked; my entire family smoked. I also served as a career US Army officer. I spent months breathing oil fire smoke during the First Gulf War; have instant olfactory recognition of "burn barrel smoke" so prevalent in Army encampments; and lived 9 years in places with high radon gas concentration. I am the only one in my family with lung cancer. Might environmental exposure be my cause?
We are entangled in a culture of blame. Devastation is not bad enough; we are compelled to make it worse by blaming. Then we shame! We do it over and over. To what end? What is solved? Here is one very sad casualty. Many who join our Forum these days are never smokers. Yet they are instantly branded by The Stigma! It starts early. Almost the first question asked by their medical team is: did you smoke? How does the answer change treatment or outcomes?
There is another causality. Blame is a blocker to low-dose CT screening participation, particularly in the US veteran community. Who, after honorable service, wants to submit to a CT scan when the outcome leads to scorn? The chance of doing nothing appears preferable to the limelight of diagnosis.
Even language used to characterize scan eligibility is blame-tinged. Who wants to admit to being a “20-pack year” smoker? No wonder less than 10% of the eligible population actually agree to a low dose scan. One must sign a piece of paper certifying smoking history, and that dresses the stage for blame and shame!
We need to be done with this!
Stay the course.
The home phone suddenly rings startling me and causing quite a bit of alarm; we never use our land line, I don’t even remember our home phone number! My husband answers and the caller asks for me. I nervously pick up the almost archaic wired phone intrigued. Hi, the caller says, this is Astra Zeneca! My heart races and I ask, how can I help? The nice agent tells me that my Canadian province does not cover my (already approved!) targeted adjuvant therapy so far and thus I have to apply for their company’s compassionate use program. They want to see see if I am eligible.
My heart, already racing from all the shocks of surgery and adjuvant chemo sessions, races even faster. I ask with a nervous laugh, how much is it? She says about $10K/month. Ten thousand dollars. Per month. For a pill-a-day that can save your life. My hands start shaking a bit, this flimsy stupid coil phone handle is so hard to use. The agent asks me if I have insurance. Luckily I do, through my work but I am not sure they cover this, so she gets busy taking all my info to chase up my insurance. My scientist brain immediately starts to think. Huh, even if insurances pays, if Tagrisso is actually good, and I live long, soon enough I will have to start worrying about my life maximum coverage. I tell my brain to settle down, that if I do live long, that this would be a good bridge to cross. Let me see if I survive first.
That night I could not sleep. I kept thinking of all those in the world who are told they cannot get their life-saving drug, or that they have to pay a horrendously large amount to stay healthy. I recoiled in horror as I remembered how my kid’s school is now refusing our request for him to remain masked in school. We want to protect him (as we did for almost 3 years now) from a terrible virus that killed many of our family members, that could cause him much short and long term harms, and that has the potential to cause his mommy who is formally designated Clinically Extremely Vulnerable untold harms, not only through infection, but also disruption of active treatment and more. The school thinks the pandemic is over and that it is time to get going with "normal life". To them and many in our increasingly ableist society, the school is telling my kid that his mommy is now expendable (to be clear, we never asked anyone to mask, just that we be given our own right to do so, and the administrators know all about my lung cancer situation).
As the night went and my insomnia lingered, I recoiled even more remembering the news of the night before. A shameful milestone for Canada. Euthanasia is now the 6th cause of death in my country. SIXTH. There are Canadians who were approved for euthanasia for having hearing loss. Literally, hearing loss was the only listed reason for one poor soul that was put down! I weep in disbelief how of little value human life has become, and how now, as a lung cancer survivor, I am part of the underclass, the immuno-suppressed, the vulnerable, those who are told to watch out for themselves, to stay at home, to consider that life is not worth living.
I wish the world was a better place.
P.S. I have yet to get confirmation of my drug coverage. It sounds the chances are high I will get the drug either through my insurance or from Astra Zeneca as they encourage our government to publicly cover the drug.
