Where was I? I have sat down to write an update a half dozen times in the last few weeks, but I would have had to update the update a half dozen times, sometimes daily. I’m in the washout period between trials and actually feel a little better every day. It’s been more than two weeks. By the time I get onto my new trial (if it happens), it will be the longest I’ve been drug-free for more than three years. This grace period is familiar to me and to anyone who’s been on chemo or radiation. You feel better, better, better, then get knocked down again by the treatment that’s supposed to save you. And there’s a bit of dread for when that’s going to happen. If anything makes you (me) appreciate a normal day more than the wash-out period, I’ve not experienced it yet.
So where am I? There’s another trial at the NIH that involves two drugs and a sugar molecule, a combination therapy that I am kind of giving the side eye to. I’ll tell you why in this paragraph. The trial involves Olaparib, a drug that may stop cancer cells from repairing DNA damage done by CHEMOTHERAPY. (There, I said it.) It’s combined with CRLX101, which is the sugar molecule cyclodextrin linked to a nanoparticle chemotherapy drug called camptothecin. That whole drug amalgam gets in to cancer cells, then it’s the Trojan Horse thing (which I love), where the drug smites the bad guys. I have been adamant about not including traditionally-described chemotherapy (yes, I know it’s ALL chemotherapy) drugs in my life-saving plan. When I go out, I don’t want to go out looking or feeling like a cancer patient full of toxic drugs, if that makes any sense. If I can help it, I won’t let cancer do that to me. The doctors say in nanoparticle size, the chemo drug MOSTLY goes in to the tumor cell; it’s not like standard chemo, which goes willy nilly everywhere. Side effects are supposed to be much less offensive, and hair loss is (supposedly) limited to “thinning.”
If I get in, this trial will begin Nov 28 with a 4-day inpatient stay at the NIH, which I am already dreading for the boredom and the anticipated bad food. It starts with an infusion of the CRLX101 (does this sound like a sports car to anyone else?), then a few days of Olaparib pills. And it’s back to another every other week coast-to-coast visit. Of course, my white blood cell count and a few other chemical measurements could stand in the way of getting in to the trial. The lower limit for ANC (WBC measurement, basically) is 1500, which I sometimes can’t hit in a drug-free week.
Where am I going? I still don’t know. Dr Simone at the U of MD Proton Research Center says his team of physicists has put together an encouraging and hopeful radiation plan for my pericardium, which is hosting a growing tumor. He says the plan is much safer than he had anticipated, but says the longer a delay, the less safe it could be. I was all in to do this before the proposed systemic option, even though it’s a two-a-day treatment for 20 days that would run from Thanksgiving to Christmas. I’m ready to get rid of all the symptoms created by a heart that’s being squeezed on two sides. I’m ready to be able to walk up a couple of flights of stairs without stopping. I’m not psyched about a trial that includes any variety of chemotherapy. Plus, my 2 and a half hour MRI to my heart earlier this week showed some invasion into the heart wall and maybe into a small muscle area. I decided that unless Dr Rajan tells me this is the worst decision I’ve ever made that proton therapy would be my next step. That was Wednesday.
I know where I’ll be, at least on the Friday after Thanksgiving. Dr Rajan called and still likes systemic first. His reasoning, and I have to admit it’s smart like he is, is that if there’s growth in other tumors besides the one on the heart, it should be treated by the most promising drug therapy that I can get. He says that my tumor growth has been blessedly slow and that the six weeks before my next-next CT scan most likely won’t show much growth and may actually show shrinkage if the sports car trial works. So the new plan (today, Saturday), is for me to get my trial baseline CT scan and ECHO on the Friday after Thanksgiving. If it shows alarming growth just around the heart (which he doubts), we go straight to proton therapy. If there’s universal growth, we do the trial. If I even get in. It’s funny, in my tv job, I knew what was happening the next minute, sometimes the next second. These days, not only do I not know what story comes next, it changes day to day, sometimes hour to hour. It’s been a great life lesson, but truthfully, it occasionally sucks.
At one point in the last three weeks, I was going to be able to stay home in Park City for two full weeks before flying back East. When the NIH couldn’t schedule tests and CT scans for me the week after Thanksgiving, I had to back up my flight plan four days. In the big scheme of things, taking into account my outrageous personal flight plan since 2013, this is a small bit of turbulence. Remember I’m the one who hit status on three airlines in one year. But I was surprisingly disappointed by the loss of days at home. I should be happy that my docs are pushing me toward the next therapy that may save me. I am super grateful for that, but more than a little wistful that it costs me a holiday home with my warrior friends and my fuzzy cats and favorite yoga classes and my own bed. I’ll get over it, by necessity, of course. It’s what I do.
But even as I talk about how much I want to stay at home, and as threatened as it was off and on, our long-planned New York girls trip happened. It was the perfect hiatus from a place called Flux, and we made the most of it. Highlights were seeing “Hello Dolly” with Bette Midler (MUST SEE, but you only have a few weeks left), reuniting with my high school pal, Maria, who looks exactly the same as she did in high school but she’s still so nice you can’t hate her, visiting with even more of my NYC girls, and eating our way through Soho.
And not forgetting our Hermes party (thanks, Peter!) and our hip hop, candlelight, hot Vinyasa flow class at 7 am.
Where am I going with all of this? Every day, sometimes every hour, I fight, and sometimes struggle, to live the adventurous, spontaneous, authentic, “normal” life I aspire to have. This has been my existence from 2001, the first time cancer dared to creep into my life and my body. Years have gone by when it’s blissfully easy. These are not those. But every day, I am reminded how lucky I am. I have the resources and ability to travel wherever I need to go to heal myself or at least try to add time to the adventures. I have the resources and ability and friends and family who say, “let’s go!” when opportunities for outrageous fun present themselves. I live in the greatest playground in America and am still able to take advantage of most of it. And to make sure I appreciate it all, I got to volunteer at the NAC barn with a girl who’s survived multiple brain surgeries but still isn’t afraid to get on the biggest horse on the property.
From here in Flux, I am grateful for everything and everyone I have in my life. I #Defy every day. But take time to have a happy Thanksgiving. Eat pie.