When I was diagnosed with lung cancer in April of 2005, cure was the pie in the sky word. And man, I was going for it.
Those hopes were dashed five months later, at my first scan post lobectomy and chemo.
In the years since I would accept that I had run out of options only to discover I was ALK+ in 2008. Four phase I clinical trials and several returns to chemo and I am still kicking.
Sorta. Some days it is more of a limp.
The vernacular surrounding cancer outcomes has undergone some changes as well. We are all still in love with the concept of cure (rightly so) but the current aspiration in lung cancer is to make it into a chronic condition.
And I have some strong opinions regarding that. Yes, in a pernicious disease such as lung cancer, cure is generally not an option. But is the notion of chronic (‘long-lasting and difficult to eradicate’) truly acceptable?
From a quality of life perspective, certainly not. Physically, financially, emotionally, I operate at a deficit. Last week this wretched disease took three of my long time friends.
I excel at getting by. However, at our last (virtual) appointment, my trauma therapist suggested that I might want to raise the bar. And damn, if I knew how I would.
It’s tough. Single, low income, aging (the goal, but comes with attendant challenges). Far too much time feeling subpar. And sad. This shit simply does not get easier.
So yes, I shall do my best to be inspirational. But I also want to underscore that we need to do better. Much, much better. Raise that bar. And chronic doesn’t cut it.
i second that!
It is a most difficult time with everything else that is going on all around us on top of our daily OTSD. I certainly can relate to the sadness as I feel October is a busy month with those who leave us. My age is also playing it’s games with me. Today we have sun and that is the best. Many hugs 🙂
So well said. I’ve been “chronic” for 10 years now. On and off IV and po. Clinical trials. “Good” days and bad! Brain radiation/ cyberknife 3 times to 7 spots. Still kicking!!
You don’t have to be inspirational all the time! (Even though you kinda are.) Sometimes you just get to be tired and cranky and fed up. Love you however you are. XO