The subtitle could read: Vein Procedure-Pearl Jam. Another Surgery Ahead-Tour of Utah. Less Stable Tumor Stability-A Perfect Bike Picture. In other words, like the intention in my hot yoga class today, we are focusing on opposites, yin-yang, pushme-pullyou, Oscar and Felix. I’ll start with some less-than-awesome medical stuff first, so I can end with a more-than-awesome Pelotonia bike photo I got last week. This will take some creative writing.
The problems with my balky portline are nothing new. In the last few months, sometimes it works, usually it doesn’t. Not great when it doesn’t, because I don’t like to drugs poured into my arm veins. Number one, the veins are overused and tired, so it hurts. Number two: My infusion is five hours long, so even if using a smaller vein that hurts wasn’t the problem, I make it worse by bumping it around (not an issue with a line in your chest). Number three: Drugs can do gross things in those smaller veins-discoloration, scarring, ugliness. So, we kept putting tPA in the port to bust the clots. Then that stopped working. Last time I was a the NIH, Dr Chang took an x-ray of my port.
You could see that the line had recessed upward from where it was supposed to be and was kind of sticking in to the vein wall, either creating or being the victim of a clot. Dr Chang kept me overnight to do a 6-hour tPA drip, but he had a feeling that wouldn’t work. So the next day, he threaded a line through a vein in my groin and pulled the port line to where it’s supposed to be. Kind of creepy, but it was a success. The port worked; there was celebrating.
Next up, over on the yang side was PEARL JAM! I’ve wanted to see Pearl Jam for years. Years! I’m not sure why I didn’t make it happen; it’s not like me. When I saw that in the middle of their baseball stadium tour, they were playing in Missoula, Montana, I pulled the trigger. They were playing at the Washington-Grizzlies football stadium at the University of Montana, a mere 7 hour and 30 minute drive up I-15. There was not a hotel room to be found in Missoula, so we got one in Butte, about ninety minutes closer to Park City and had to drive there after the show. Which was one of the best I’ve ever seen. It was a benefit, which I didn’t know. They were trying to get out the vote in Montana to THROW THE YOU-KNOW-WHATS OUT! (It was my people!!) I loved every minute. I won’t say it was worth the wait to hear Pearl Jam, because shame on me for not saying yes years ago. I could have seen them a dozen times by now. I’ll for sure go see them again. It was an incredible show, from the food trucks to Jeremy, from standing in line to buy the first concert shirt I’ve bought in 30 years to Evenflow. Don’t put the good stuff off.
Driving home the next day didn’t go all that smoothly. There were stretches of highway where construction forced North and Southbound traffic to be separated by just a dotted yellow line. From the other side of that line in Idaho, a giant piece of asphalt came shooting out from underneath a semi and smashed my passenger side mirror to smithereens. A few inches to the left, and my windshield would have been the target. Expensive repair, but I did get to drive my ghetto Lexus around Park City for a few days, so that was fun(ny). I wasn’t sure they’d let me in the city limits like this:
Then, it was back to Bethesda, where I’m finally getting my infusion, almost seven hours after I got here. Busy place, that NIH. Yesterday before my CT scan, the nurse flushed my port, and….. nothing happened. It didn’t work. After two days of plumbing just two weeks ago, non-functioning. Incredibly, the line had moved back up and into the vein wall, and the clot is doing it thing again, making sure the port doesn’t work. More tPA, and it is working again well enough for this week’s infusion, but no one expects that to last. What that means is I have to get back on the Lovenox, the blood thinner that gives me huge ugly bruises and hematomas at the injection site. And the port has to go. I’ll be back under the knife to get a new one put in within a month or so. Not looking forward to another surgery, but looking forward even less to getting drugs in my arm. Territory we’ve already discussed. Choices between suckage and another kind of suckage.
I’d rather talk about bikes. The Tour of Utah rolled through and around Park City, but I missed most of it, as I’m only home 8 days in August and September. On the day before it ended, Patrick suggested we ride up Royal Street (steep, 3.1 miles) to watch the peloton roll up later at a much higher rate of speed. Park City is smoky because of the California wildfires. My breathing has been more labored than usual (more on this later), even without the smoke. But I really wanted to see some of the race, so up up up we went. We left ourselves more than an hour to get into place on Guardsman’s/Marsac, because Patrick said, famously now, “It’s not going to take us an hour to get there.” (He hasn’t climbed on the bike with me in a bit.) It took 56 minutes, which technically isn’t an hour, but really is. We were in perfect position to watch the boys ride and suffer. Then, we got to descend down a HUGE steep hill, which I love. A good day.
And about that CT scan. “Stable” is a bit more wobbly. It looks to my NIH team that there’s some modest disease progression in the pericardium, the lining around my heart. Dr Rajan is still calling it stable, and I’m staying in the trial for now, but antennae are up. I knew something wasn’t quite right, as I said before. I’ve had a bit more trouble breathing than usual, and I had about three days of that take-your-breath-away rib pain for a few days. Both of these things have happened before. I’d actually surfed http://www.clinicaltrials.gov
this week to see what else might be out there. (Not much.) No one, including me, is worried or concerned or scared or going to lose sleep over this (I’m a bad enough sleeper as it is, thank you very much). I’m staying with the CRLX 101 program, and will just keep my spidey senses sharp. All those negatives (worry, concern, fear, sleeplessness) are attitude killers that serve me no purpose. I have too much adventure ahead to waste time on feelings that too often paralyze and make things worse.
I managed to write along the same path that I’d planned (a small miracle, considering MY stream of consciousness!) , so I get to close with a photo that arrived in my email from Pelotonia a couple of weeks ago. Life is as big as you make it. #defy #livefearlessly