An adaptation of a great line from one of my favorite movies keeps rolling around in my head after finding out that, guess what? My disease is NOT not growing at all. Upon closer inspection of my radiology reports from the last 20 months, Dr G says there are two lesions in my lung lining that have been growing ever so slowly since at least the beginning of the PHA trial. He says they’ve grown 2-3 millimeters. Because I am the Queen of Google, I googled two millimeters. That’s this big:
About the size of a dot from the end of a brand new Crayola crayon (which I used to LOVE to use first). What the?!?!! Dr G says we don’t do anything different unless and until one of the lesions, which is close to a nerve, touches the nerve, at which time it will be very painful and we’ll radiate the shit out of it. I say, why don’t we attack now, before it knows what’s coming? He says radiation has its own set of side effects, of which I am keenly aware. He says stand down. The reporter side of me couldn’t just STAND DOWN, so I contacted Dr Rajan at the NIH/NCI. He says it’s not uncommon for a targeted therapy not to target ALL of the disease. Small pieces can grow, and 2-3 millimeters in almost two years isn’t terrible. None of the professionals are worried, so/and neither am I.
About the same time I learned that “stable” does not mean what I thought it meant, I heard from Kathy, the only other person still getting the PHA drug in the United States of America. Her tumor(s) has/have grown more than 20-percent, meaning she’s out. No more compassionate use for her. Like Mike and John before her, Kathy will now do the rare-cancer-that-does-not-have-a-standard-of-care scramble. Lucky for all of us, this recurrent version (2.0) of Thymic cancer seems to be a slow-grower. In fact, I had a farewell lunch with Terry, my favorite nurse at Huntsman Cancer Institute today (he’s retiring, bummer for me), and he was telling me about a patient who’s going on 15 YEARS with Thymic Carcinoma and who has taken no drugs at all. Her tumor growth is about a millimeter or two every month, and she’s chosen just to watch and wait. Mind-boggling. And hearing a story like this, if I hadn’t briefly had tumor shrinkage, I’d wonder whether these experimental drugs are working at all. I’ll go with yes, but I do like hearing stories like this. (Of course, he balanced that with the story of a new TC patient who’s only 18, so cancer still does suck the big one.)
So now what? Well, I leave for Columbus and Pelotonia tomorrow and couldn’t be more excited. Not only do I get to sit on my bike for probably 10 hours or more over two days (180 miles), I get to smooch some of my Kili climbing pals, hang out with the fabulous Ulman family, and go to the North Market with Alex. (Last year, he had to take me to the Apple store, where we hung out for hours while I got a new iPhone. I’d say he’s trading up this year.)
And I am re-reminded to Amass Adventures. I’m planning to drive up to Jackson Hole to see the eclipse next month. I know half a million people will be there, but the next one doesn’t come for seven years, and who knows what’ll be by then? Even if I have to get close and park on the side of the interstate, I want to see it. I vaguely remember seeing a solar eclipse when I was in elementary school. I think we punched a hole in a shoe box to “safely” watch. Again, what the?!?!? I’m sure I seared my eyeball. Me and all the other kids at Cloverly (or was it Stonegate?) Elementary School.
I’m not sure I wrote about my 30 days of yoga (in a row) that I did this summer, but it was a great challenge and accomplishment. Pretty much everything hurt the first ten days, then I got stronger and more flexy and more balanced. It’s still hard to be a tree when you can’t feel your feet (neuropathy), but that didn’t stop me from trying! I loved the structure and the discipline and the physical and mental boost. It was more reinforcement (as if I need it) that pushing your perceived boundaries and adding on to your life experiences wherever and whenever you can makes you fuller, richer, deeper, and wider (wider inside, not out!). My favorite Bono line is this, and I have my targets set on it always: Joy is the Ultimate Act of Defiance.” #Defy