I have been home now for 11 days. I have no plans to get on a plane for 17 more days. Even with my rudimentary math skills, I calculate 28 days at home in Park City at 7000 feet. That’s nearly a month. That hasn’t happened since January, if I remember right. And back then, by the end of the home stint, I was hypoxic, suffering, and ready to get back to sea level. This time, I am loving every day getting back into my Paradise on Earth routine. I can’t say I feel “fine,” but I feel better than I’ve felt in probably a year. I must have been looking pretty haggard at times over the last few months for the number of times friends have remarked about how good I’m looking now. And last night, for the first time that I can recall, I slept without supplemental oxygen at home, and my pulse ox was 90 when I got up. I vaguely remember that this is how normal people sleep.
It’s looking like my doctors’ suspicions that the difficulty breathing, excessive coughing, and hypoxia is from drug toxicity are correct. They can’t test directly for that; they have to do process of elimination, which is why it’s taken so long (soooooo long) to get here. I’m starting my third week of high dose Prednisone and Bactrim, and it is working. I can breathe better, blood oxygen levels are higher.. Even my average daily heart rate is lower. You can see it on my Fitbit. For months before I started this steroid fix-it solution, my average heart rate varied between 93 and 97 (!). In the middle of June, in a matter of three days, it dropped to 83 and it’s stayed there. That’s still ridiculous for someone whose resting heart rate used to be in the low 60s, but it does mean I sleep better and will have a better shot at adding 5 pounds, which my skinny butt (literally) needs. I am still able to maintain that crack in my ribs with surprise cough attacks, but hoping that less coughing on top of the monthly Zometa infusions will eventually do their job.
So now, I want to do everything. I want to go everywhere (starting in 17 days). It’s a glorious summer in Park City for many reasons. It’s nice and relatively cool, and I feel well enough to take out the Vespa, get back on the bike (inside for an hour, but I’m taking the Tarmac out this afternoon (probably)), and actually walk places. I’m boxing or taking yoga or Orange Theory’ing or something every day. I’m taking advantage of relative wellness to build back strength and endurance, which vaporized over the last few months. I’ve missed the Fourth of July parade, the farmers’ market, and all the Deer Valley concerts for a year because I just couldn’t drag myself there. I’ve already returned to two of those, with the third coming in two days, hopefully.
The best part of my summer so far is my return to the National Ability Center barn. I barely had the lungs to walk around the barn once for a lesson, let alone trot down one side. Then, in a stroke of lucky timing so I wouldn’t miss as much of the action, the NAC started renovating the barn so there were no lessons all winter. I volunteered for a hippo therapy lesson, which requires very little trotting, just to test myself out. The first ten minutes of getting Brownie from the pasture left me a little breathless (for the wrong reasons), but then, my lungs got back into a groove. It was a great lesson and I felt strong, and I’ll be back volunteering at the barn three times this week. It’s about independence and freedom and stretching your perceived ability, and I’m not just talking about myself here. Love.
I am savoring these days of summer. I truly thought, in my inside voice, that I wouldn’t feel this good again. My Stage IV Mets friend and I discussed this about both of us a month ago: Is this the beginning of the downward spiral? Both of our treatments and trials and drug toxicity and killer side effects have gone on for years. But happily for both of us, it’s not the edge of the cliff, at least not today. I’m not going to worry about tomorrow (I don’t ever worry, which I’m guessing drives people mad because it seems impossible, but it’s true), but I know change will come. Even though the Afinitor/Everolimus was poisoning me and my lungs, it was keeping the tumors at bay. I’ve now been off of any kind of cancer drug since June 4. There are no plans for me to start anything until the end of this Prednisone run, which will last another month. Then what? I could step down to a lower dose of Everolimus, but I am not psyched about compromising this quality of life that I have unexpectedly found again. My friend, Angie, is so smart and also connected in the oncology clinical trials field and is finding me options. Dr Rajan and Dr G are looking around, too, to see if there’s even a stopgap measure that could tide me over to the next promising protocol. You may remember my last “stopgap measure” was Milciclib Maleate, and that worked for me for 2 1/2 years. August will bring something new, I just don’t know what.
But for the rest of July, I’ll be based at the Moose Lodge, at HOME, appreciating every non-oxygen supplemented minute of living in one of the greatest towns in America. #grateful #Defy