Part I – Written in my journal Friday morning…
Today is huge. HUGE. I feel like I’m on my way to a courthouse to be sentenced, knowing that I haven’t done anything wrong but afraid that the jury is NOT made up of my peers and that there’s a chance the judge is being blackmailed. *sidenote* It’s weird – I never just journal anymore. The above cross-outs and inserts are reflective of the fact that now, my personal writing is always going to be transcribed for my blog. My inner sanctum’s door is always open to the public eye.* Anyway, I’m going into today’s appointment with more apprehension than I’ve ever felt. In my entire life. I haven’t hid this trepidation from my friends and family and I know that my fear scares them. Everyone’s gotten so used to my game face that I reckon I’ve duped them into believing that I’ve maintained positivity and optimism throughout this whole thing. I have, mostly, been positive – simply because I enjoy life and I’ve been living. I’ve adapted to my new normal so much that I can go through most of my days with a smile on my face and a spring in my step. But my ‘scanxiety’ this week bears so much more weight. The possibility of certain death feels so much more possible.
I’ve heard a lot of people living with cancer say that they refuse to let cancer define them. In fact, I’ve probably said it myself. But the truth of the matter is that, right now, cancer does dictate the way that I live, the way that I think. I am forced to live within its perimeter. Cancer is, essentially, my jail. And while I’ve tried (and think I’ve largely succeeded) to stay ‘me’ – it is a new version of me.
I went into yesterday’s appointment with the understanding that, if my scans showed disease progression, things would get complicated. My options beyond the drugs I’m on and the ones with which I’ve already been treated are limited. Were these drugs not working, my chance of survival would be diminished significantly. Needless to say, I was scared shitless.
Every ‘scan week’ in the past year and a half has involved a few restless nights, a few mild panic attacks. This past week, between scan day and results day looks something like this: I wake up at around 4am in a cloud of the darkest thoughts. My breathing constricts to the point where I assess the need for a 911 call. I white knuckle my pillow and force myself into a state of yogic breathing. When I’ve gotten myself just about sorted, the tears come. I choke on them as I crawl down to the foot of the bed and spoon Oscar. He licks my hands as I whisper my fears to him, tell him that I don’t want to leave him. He is a true best friend and an awesome listener. I eventually fall back to sleep, and when I awaken several hours later, I put a smile on my face and get out of bed and I face the world. I do my ‘new’ life. Because I have to live NOW. Now is what I have.
On Friday, my mother, godmother, an awesome videographer named Marcia, and I drove to NYU together. The dynamic in the car contained some of the usual hilarious banter that always transpires when Roni and Bonnie are together. There were a few jabs exchanged between my mom and I – our usual schtick – and more than a little bit of backseat driving, gasps every time I changed lanes. The dialogue about the ordeal we were potentially headed for was limited. We managed to mask the inner turmoil with comedy for most of the car ride.
We were met at the clinic by Steph – a long time friend, co-conspirator on my cancer documentary, and a gem of a human. I had offered most of my directorial insight beforehand, and I was confident that Steph and Marcia had my back… I could just be ‘Jen the patient’ while the cameras rolled. We got into the exam room quickly and Marcia set up for a one-woman two-camera shoot. My mom and Bonnie sat in chairs, absorbing the room, occasionally squeezing each other’s hands.
And then Melissa was there and, as usual, she was out with it the second the door closed behind her.
“It’s all really good news!” She smiled and flapped her arms at her sides as she does when she’s happy. “The two tumors in your small intestine appear to be gone. One of the ones in your stomach shrunk significantly and the other one stayed the same… which is a good thing.”
Cheers and tears from the mom section of the room.
“And that thing on your lung isn’t there anymore, and the thing on your ovary got smaller.”
“On my… ovary??”
I had known about the ‘blip’ on my lung… I didn’t tell anyone because it was likely an inflammatory response to the immunotherapy and the ‘lung’ thing freaks people out. But somehow I missed the ovary thing. In any case, it shrunk. My mom and Bonnie continued to joyfully cry and hug in the way I imagine they would had I just given birth. I maintained my usual stoic composure as Melissa and I discussed what’s next.
What’s next is that we change nothing. I stay on the vampire drugs for now and hope that I don’t develop a resistance to them. There is a possibility that when the tumors have shrunk even more or disappeared, that I will revisit the ipi/nivo immunotherapy combo. We talked about what will happen when Melissa goes on maternity leave in several months. And then I asked the question I always ask.
“So I’m not dying?”
“Nope,” Melissa shook her head emphatically, “You’re not dying.”
We decided that a trip to Joe’s Shanghai in Flushing was in order to celebrate with xiaolongbao, and the five of us piled into the car, camera still rolling. I asked my mom and Bonnie their thoughts, and Bonnie said she was so surprised that I hadn’t reacted to the good news..that I hadn’t cried or jumped for joy. And then a cousin texted my mom. She read it out loud… ‘How’d it go?’ My mom looked to me for permission to respond (I can sometimes be selfish with wanting to deliver good news myself). Instead, I said bitterly, “Tell her I still have cancer.”
Eventually, I allowed my mood to lighten. My favorite dumplings on the planet and a tsing-tao certainly helped. I wanted so badly to share in their over-the-moon joy. I tried to explain to them that, even though they couldn’t see it, the knots in every inch of my body had unwound a bit. My jaw was no longer clenched. I did feel lighter. I get why everyone else is super duper psyched… they’re not going to lose me. There’s still hope. I get that, and on many levels, I share it. It’s just hard for me to get super duper psyched about being told that I have three tumors instead of five… that I need to continue to take eighteen pills a day to stay alive and sweat my tits off to avoid third degree burns.
I guess what it boils down to is the fact that Friday wasn’t a sentencing…I already received a life sentence. It was a parole hearing to examine new evidence that could either send me back to the comfort of minimum security or to the chair. Luckily, the verdict was in my favor.
(Are you guys sick of my metaphors yet???)
I’m well aware that my conceptual jail only applies to my health.. that my actual day to day existence is more free and easy than that of a majority of the people on this planet. For that I am grateful. While I never would have chosen this version of 42 for myself, I have found, in this disease, a new sense of purpose. I feel like, for the first time, I have this really important reason to use my voice. Maybe cancer doesn’t define me… but it has definitely redefined me. So I’ll continue to live in my new normal with a smile on my face and a spring in my step – because, guess what?? I’m not dying. Woot!