A lot has happened since my last blog post: a hospitalization, a trip to LA to give a TED Talk, a trip to Austin to be a part of my cousin’s baby shower, and another hospitalization which I am in the midst of as I write.
Right now, what feels important is letting other people know that I’m not giving up, I’m not quitting. If there was anything else that could be done, I would grasp for it with every ounce of my strength, but there’s not. The reality is that there’s nothing that can fix what’s happening right now. And so what I need to practice is acceptance. And I need to have everybody else look at this as optimism, not pessimism. I think that I’ve lived a wonderful, wonderful life, and I don’t want to live a life that is 24/7 pain and suffering, which is what it’s become. I’m devastated about it, but I’m not not ready for it.
But first some good stuff. Some really good stuff. I gave a TED Talk – and bucket list doesn’t even come close to the level of importance that this has to me.. . . My friend, Lucy, invited me to speak at TEDx Venice Beach with speakers like Diane von Furstenberg and Moby, and I dropped everything to do it. Once in a lifetime, right?
By the time the TED Talk was two weeks away, I had spent some time writing it, yet I hadn’t really scratched the surface. Of course, as has been typical of Jen’s cancer life, I got really sick and I ended up in the hospital, where I managed to get a bunch of chunks of the talk written by hand every day. I never name drop – but come on?!? – to a doctor a TED Talk is the equivalent of an intellectual boner. And so I did drop a name – Ted: “You have to get me out of here I’m giving a TED talk.” When I was discharged the plan was to have my giant tumor, the one that is pressing on my bowels, my bladder, and my diaphragm, removed by Dr. Siobhan Kehoe — another amazing woman who makes me feel so special and loved, and within minutes of meeting me treated me like kin. This was going to be done after my Austin trip, and before my Thanksgiving week treatment.
The flight to LA was horrible. I was alone, I was sick, and my window seat was not conducive to me needing to go to the bathroom every ten minutes. Luckily, Ariel was already waiting at my gate when I arrived, my sweet sister, showing up again to save the day. She really is my superhero. The two of us dropped our stuff at Lucy’s, took a bit of a rest, and then went to check out the venue where the talk would be held. While I had dress rehearsal she met up with our dear friends, Jordan and Ray, and explored Venice Beach a little, and then the four of us had Mexican food. We both stayed at Lucy’s that night and I didn’t sleep a wink. I wasn’t sure which pills to take, or how high of a dose, all I knew is that I needed to sleep. Sadly I did not.
When we arrived I glanced over at the name tags and saw one that read “Adrien Brody” and thought ‘day-um, of course, my number one celebrity crush’. There were three sessions of talks and I watched the first session with Jordan, Ray, and Ariel with enthusiasm. . .and with the slight awareness of the fact that Adrien Brody was sitting 4 seats away from me. After I snuck out for a cheeky burrito across the street, I went into the greenroom to hang out with my new Aussie friend, Jordan, a makeup artist who was to do all the TED speakers’ touch-ups. Since the room was otherwise empty he turned the lights out and instructed me to sleep. “Just relax, I’ll get you up 30 minutes before your talk, make your face look beautiful, and send you out on the stage.” His smile was sincere; I was assured. I woke up from my nap to find Moby meditating on the seat behind and he asked me how I was doing. We already made our introductions before so I felt pretty comfortable around him and I said “actually, when I saw the program this morning I was pretty bummed that they put me on stage right after you. And then I realized that, for the rest of my life, I get to tell people that Moby opened for me.” We shared a chuckle and then he headed out to give his talk. It was countdown time, for reals.
I gave my TED Talk and all went well. Like, really really well. Like, standing ovation well. The only thing I didn’t do well was receive the compliments of the applause, while everybody stood with tears in their eyes clapping for me, I awkwardly skulked off the stage. As we were going back in to watch the third session I noticed Adrien Brody wrapping up conversation. I gave him a gentle tap, an introduction and a nice compliment. He did the same and then enveloped me in his arms so deeply and so sincerely that I thought I was going to melt. Ariel stood behind me, half-chuckling at knowing how melty I was and half coming out of the pride stupor from just having seen my talk.
I didn’t have the energy to go to the after party and because Ariel was leaving that night the four of us just grabbed a mellow dinner and Ariel Ubered to the airport while I went to get some much needed sleep.
I spent the next day sick on Lucy’s couch. Fortunately, she was around to hang out with me for a big chunk of it. We had a lovely dinner before I Ubered to my absolutely fucking miserable red-eye back to New York. Then it was wham bam thank you ma’am – landed in the morning, packed in the afternoon, worked in the evening only to wake up to have to go to another flight the next day. Even for a well person this is quite the turnaround, for me it seemed impossible.
On the way to the airport, I was in a ball of pain and wailing like a seven-year-old on her way to the dentist. Fortunately, my cousin had an oxycodone in her purse and the airline employees were understanding enough to give me the entire back row. Back row equals first class, baby.
Austin was amazing and everything I needed it to be, but by then I knew I was really sick, and found myself pacing at night, thinking that I was dying, that my family would find my body in bed. Everyone worked hard to accommodate me, but I felt like a piece of shit because I like to help, and while everyone in my family was preparing for the baby shower, our reason for the trip in the first place, I couldn’t lift a hand and it made me feel really useless. In the end, the visit was wonderful, warm and fuzzy, really beautiful but also sad. There were times I was sobbing and doubled over in pain, but I was surrounded by my family and they helped me and rubbed my feet, they cried with me –my uncle kept handing me a guitar and asking me to play. Death brings out a lot of beauty. That’s what I learned in that Austin trip.
When we arrived to check in for our return flight, we realized that the flight attendant from the way there had called ahead and already reserved us extra seats and pre-boarding privileges. There are some really, really fucking good people in this world. On the plane back I reflected that, often, it’s only for weddings and funerals that entire families come together. What I realized in Austin is that I was in a very, very horrible situation but for what it was, I was in a really excellent position: I got to be part of that togetherness, I got to grieve my own death with my family, which is such a rare thing to do.
The day after I got back from Austin I went for a check-in with my oncology team to discover that, surprise surprise, my hemoglobin had dropped down so low that I needed an immediate transfusion. Unfortunately, because treatment the following Monday would require for my hemoglobin to be at 9.0, I would need to get another blood transfusion on Sunday.
I opted to stay in the city Sunday night with my friend in the West Village, since Monday would be an early treatment day. Sunday was, again, another practically sleepless, horrible night. I woke up in the morning and puked my guts up with my friend Terry, another incredible, feeling, compassionate human in my life. I got to Dr. Wilson’s office and got my labs done and it turned out that my body wasn’t holding blood at all, meaning I couldn’t be treated. I missed the time frame and that effectively ended the clinical trial. My new options were the Lion Trial (a new form of TILS therapy being studied), chemo, or hospice. I was taken in an ambulance to NYU Langone because of the internal bleeding and waited.
After yet another excruciating day in the ER, which involved extensive testing and scans, I started to receive bad news after bad news. First the G.I. team came to tell me that, basically, there was nothing they could do for me. Then Dr. Kehoe dropped in. She informed me that, after comparing my scans that I had from September 29th and the ones taken October 30th, the day before, surgery was no longer viable because it was highly possible I could die on the table. The results indicated that my tumor had grown significantly. It’s about 17 centimeters and it’s big and invasive and pushing on all my organs. And so my options changed again, quickly: hospice or hospice. Melissa came and talked to us, and finally said the words – THE words: that it was time to see the people I want to see and say the things I want to say.
That is, until her epiphany Saturday night: she realized one of the targeted therapies I was on – the third line of treatment (first was ipi/nivo, second line was one form of targeted therapy I had anaphylaxis from, then these pills: the vampire drug that I couldn’t tolerate the sun from), could potentially work to shrink my tumors just enough to buy some time. I took a dose Sunday night, and then after fully understanding what the goals of hospice are– only palliative measures, nothing curative – I opted out of the targeted therapy. They weren’t going to cure me, so what was the point?
Now, with all of the painkillers in order and my meds all sorted, I feel great. When I’m up and alert I feel more alive than I ever have, I feel more at peace then I ever have, and I’ve never felt more certain about anything than I do about the fact that I’m ready to go. I have spent the past few days saying some tearful and some laughter-filled goodbyes to and with people I love very dearly. Today, I was moved into a private room and was allowed to have my dog brought into the hospital for thirty minutes, which broke my heart, and made my face stink from his poopy mouth. I am confident in all the decisions I’ve made and I realize now that if I had to choose the way the end of my life would look, it would be just like this (or on a desert island with Adrien Brody). In my TED Talk, I said “I don’t fear death itself. . . I fear that my voice will be extinguished before I’ve had the chance to have my proper say.” Honestly, I can’t imagine a greater stage than TED on which to have that proper say. Honestly, I can’t imagine that I could have lived a life any fuller, any freer, any more filled with love and life and adventure.
I’m pretty sure that we all know that in this battle, or journey, or whatever it is that we choose to call Jen vs. Cancer, who the winner was. Take that, cancer. I beat you, you ugly motherfucker. I made it to the end with a smile on my face and a song in my heart.