It is not Definitely Not Working (Not much of this cancer stuff makes sense to me either)

So as not to bury my lead and to help you try to decipher the title of this post, the headline is that I am still in the PHA clinical trial at Georgetown. I now (probably) know what (most of) my future holds (for the next 6 weeks). Last time I saw Dr Giaccone, he said there were three possible results we would find in my first CT scan of this new trial: A. Tumor shrinkage (ideal), B. tumor stabilization (ok), or C. tumor growth (bad). A means the drug is working, C means it’s not, B could mean either. It’s the nebulous, murky middle. It’s the one that gives you no immediate clear indication of whether or not my team and I chose well. That’s the one. I found out today that I am “B.” Which was a surprisingly big relief for me. I came to Georgetown this time ready to go down my next, different treatment road, but now I have a reprieve. B means maybe the drug is working and I’ll have stable disease for a while.

I have to tell you, I was getting just a little weary of changing the course of treatment every few weeks. I am really ok with change and chasing down options, but the constant change I’ve been dealing with for the last few months has worn me down a bit. It’s been like standing on a sand bar when the tides keep changing and the sand keeps eroding. Not scary, but constantly making adjustments can make a girl long for a bit of stability, which I (kind of) have now (for six weeks, at least).

This MD/DC visit has been a really good one, and one in which I found lots of signs that things were going my way. First, even though I was flying the dreaded United, connecting in Denver, where I usually find myself with 15 minutes to run 40 gates to catch my next plane, I found a miracle. My United app said I was coming in to and flying out of the same gate. I must have checked my phone a dozen times to see where the error was. There was none. I had an hour layover, but didn’t have to run. So, of course, I walked 15 gates away to find something decent to eat. Dork.

 

 

 

 

 

 

 

 

 

As luck would have it, the Washington Capitals were playing the night I flew in, and we got to see a terrific victory in which we UNLEASHED THE FURY on the LA Kings, saw Tom Wilson pummel Luke Schenn of the Kings, and saw Jason Chimera score an empty net goal. Oh, and we won. And I got to wear my Slapshot hat, which I found in the back of a drawer.

The next day, I went to Georgetown early, JUST IN CASE I could get in for my CT scan early (which never happens). But (cue the choir), it did. I got in early, which means I got out early, which means I was on time to meet Sheryl (sister in law) and Amanda (niece) at Earth Treks Climbing Center. I’ve been meaning to come here for a long time, and this, the 2-year anniversary of my Mt Kilimanjaro summit with Survivor Summit and Livestrong, was coincidentally, the time. The place is owned by Chris Warner, who was our lead Kili guide, too. (He told me not to embarrass him. I told him I just wanted to not fall on my head. Neither happened). We worked with Ex, one of the managers, to learn to tie knots (!), to belay, and to climb, first, the 20-foot wall. Then we moved on to the Big Girl wall. Amanda shimmied up like a little bendy spider monkey. Ex said he wanted me to try one of the harder walls, which had a 5.10a difficulty level, which I think he either said was advanced intermediate or The Wall That New Climbers Attempt Fully Expecting to Fall off (of). The Shadowbox Climb. It’s about 1,000 feet tall. And it’s a roof climb, which really means there are ceilings. Take a look:

A butterfly or 49 was/were fluttering around my heart and stomach, for sure, when I looked up, up up. And by the time I was where you see me at that second pitch, the butterflies were storming through a tsunami of adrenaline. It was SCARY and HARD and TERRIFYING and the hand and footholds I had were TEENY and I wasn’t sure I had the STRENGTH or FLEXIBILITY to make it to the top, so I did.

 

 

 

 

 

 

 

 

 

 

I’m hooked. I already foresee yet another pair of shoes I can buy and another sport for which I can outfit myself. Amanda, Sheryl, and I have decided we’re going to do this every time I come back to DC, which thanks to my CT scan is every two weeks for at least six weeks.

So chances are the PHA drug is doing SOMETHING, and the good news is, it’s (hopefully) doing its thing without bitch-slapping me with side effects. I told you it’s 7-days on the drug, 7-days off. And the side effects are cumulative, i.e. they will probably get worse every round. Last week, I couldn’t leave the house on Day 7, for the fatigue, dizziness, nausea, and my racing heart. My waking heart rate is over 100 for the end of the drug cycle. And somewhere around Days 5-7 of the previous round, I knocked a cup of coffee in to my fairly new MAC, which basically meant that cup of coffee cost me $805, because it fried the inside of my computer whose guts I had to replace. And it was a terrible cup of coffee!! And it’s not the only thing I’ve let crash to the counter or the floor lately. I have a bit of dropsy going on that I will blame on experimental drugs. But so far, knock on wood, no (more) crazy side effect diseases have popped up. No ebola or beri beri or leprosy. It’s enough to make a girl (somewhat) optimistic.

So, forward I go. I have a couple of crazy skiing adventures coming up in the next couple of weeks, and visits from friends and the Admiral and Pally. Then, it’s back to Georgetown in about a week and a half and on to NEW YORK CITY to hang with my love, Suzanne, and Superhero, Maria. And I’m seeing another Oscar contender (Carol, the last big multiple category nominee on my list) with my mom tonight. Life is good. Defy.