I was exceedingly hopeful that the sound in my lungs had abated. It was almost comical when I realized that it was simply a matter of position–I had been sleeping on my right side and my right side only. Once I rolled over, there it was.
Did I say almost comical? In truth, my left lung offends me. Were it anatomically possible, I would simply reach down my throat and yank the corrupted lobe from its stem. And if you know me, really know me, you understand that I am not joking.
It is maddening to realize that the whole damn affair can be brought to a close by one errant organ. Why must it be an essential one? The appendix is underworked. Could it not spend some of its spare time learning how to breathe?
I will know more after my upcoming scans but I must say that I do not believe this combo is my panacea. If it were, I would not have to stop to catch my breath on every landing as I make my way up the 94 stairs to my studio. And if it were, my lung wouldn’t continue to crackle and hiss and moan.
Oh to draw air freely. To once again be strong and fit and able to believe that I wasn’t simply winding things down.
It could still happen. Part of me believes it will–that there is no other acceptable outcome. But another, rational part of me understands that I am like any other. And that tomorrow is–always has been–a maybe.
I am a nonsmoker about your age with no mutations that have established treatments. I also have left lung disease but also have several mets in assorted places. After none of the 4 previous treatments i had worked, I’m on a trial combo now that includes docetaxel plus a study drug pill. I still have hope, getting some response 🤞, and still so happy to be alive!!!
To me the important thing is that if this drug combo is not or stops working, you are strong enough to continue on to the next option (which you seem to be!).
Wishing the best for you. I remember that you said you were one of the first to get an ALK drug. You have had luck and good science on your side.
Keep up the hope!