back in the saddle again

“Angry. Sad. Terrified… The usual suspects. And a few I can’t identify.”

That’s how I responded to a text message from my close friend, Aubrie, last Thursday morning. She was texting to see how I was holding up in the wake of the (spoiler alert) shitty fucking news I got on Wednesday.

She asked if I was going to try to write about the emotions I couldn’t identify. I am.

There’s one that resembles guilt.  I’ve made a lot of phone calls, done a few face time calls and sent a lot of emails and Facebook messages in the past week to deliver ugly news. This guilty-ish feeling, which I am experiencing right now, as I write these words, springs from the fact that in delivering such news, I am inflicting pain on the people I love most in this world. Telling them (you) is almost as hard as hearing it myself. The reason I can’t call it straight-up guilt is that I am wholly aware that none of this is my fault. I don’t feel responsible for it… but I still carry the responsibility of it. I’m the uniformed officer ringing the doorbell in the middle of the night. I’m the on-air journalist at ground zero.

Another of these nameless emotions is one of self-importance. One thing that cancer has done to (for) me is make me aware of how unique and wonderful I am. On the surface, that may seem a positive thing. But the truth is, this self love is the product of coming to terms with the very real possibility that I might die, and the knowledge that, with my death, the future me – a more evolved me – disappears before she has the chance to have her say. It breaks my heart that the characters in my screenplays and unfinished novels might die on the page, that the words of wisdom I have to offer my nieces and nephews might never be spoken, that the songs I’ve written might no longer be sung.

I (and a million others) have described cancer as a roller coaster, but last Wednesday was more like an elevator in a busy office building. The day started off quiet and cranky…I had to get up at the crack of dawn to make it to my 6:30am MRI and following 8:30am CT scan and, because I had to fast for the tests, I needed to do the drive sans coffee. I had reserved the early bird special at the garage across the street from the NYU cancer clinic and scored a rate of $21 for twelve hours (going up!). I was well prepared – had gotten (with the help of my amazing film team and the support of NYU’s media department) all of the nuts and bolts in order to shoot my ‘scan results’ appointment later that afternoon. Usually, there are several days between my scans and the results, but since I have been undergoing daily lymphedema therapy, Dr. Weber (Melissa’s stand in while she is on maternity leave) agreed to put a ‘rush’ on the scan reads and deliver same-day results. So I would have about four hours to kill in the city in between, and I had planned to maybe do some writing or, if the words weren’t flowing, go see a movie.

To my delight, on Tuesday I received a call from none other than Gann, my brother from another mother, who had just resurfaced in NYC after his annual summer stint as a tour guide in Alaska. Gann and I were introduced by a mutual friend via Facebook five years ago, when he was considering ‘doing some time’ in Korea. He showed up at my doorstep with a backpack, a guitar and a feather in his cap, and during the subsequent six weeks of being roommates, we forged a deep, lifelong friendship which we have worked hard to maintain, sometimes across many miles. As Gann was free the following day, we made plans to have breakfast and do one of our marathon walk-and-talks through the streets of Manhattan.

Since Gann and I arrived about an hour before we needed to be at the hospital, we passed the time in a nearby park playing 3:33… a brilliant game only Gann could have devised, for which only a stopwatch is required (I’ll be happy to teach any of you  – just ask!). At 1:30, we met Tefe, a filmmaker and friend who had agreed to shoot my appointment. We did a pre-interview in a little courtyard behind NYU, talked about the significance of the looming appointment, rejoiced about my upcoming trip to Busan for Halloween (which I have kept largely on the DL so I could surprise some of my people there), and engaged in our typical, hilarity-filled banter.

We made our way up to the doctor’s office where my sister, Ariel, was waiting. My sister, who has earned the job of being my front-row seat companion on this roller coaster, is THE most dependable human I know. But that’s not why she is the one who I have leaned on the most through all of this… it’s because of the profound mutual understanding that we share… a ‘no-words-necessary/any-words-welcome’ kind of connection that allows me be 100% raw in my response to all of the shit I have to face with this disease.

And then, the cables gave out – the elevator went into freefall. Dr. Weber and Kathy entered the exam room, and they were out with it immediately. Dr. Weber opened with, “I’m afraid I’m not the bearer of good news…” and then the details become fuzzy. This is, essentially, what we learned: Between my last scans three months ago and now, my disease has progressed, which means that I’ve had new tumor growth. There are approximately 5-6 measurable tumors in my abdominal cavity and one in my pelvis, which is about the size of a baseball. This means that I developed a resistance to the targeted therapy drug combination I have been on, and that we need, once again, to switch treatments.

The good news is that I get to stop taking the Zelboraf/Cotellic combo, you know – the vampire drugs, which have started to make my hair fall out. The other REALLY good news is that my MRI was clear – no sign of disease in my brain. My team (and Melissa weighed in on this) has decided that the best thing is to restart the ipi/nivo immunotherapy combination immediately. This is the drug combination to which I had that initial, ‘miraculous’ complete response (CR) in early 2015. The belief is that, since I responded so well to it before, it is likely I will respond to it again.

Then, I asked the six hundred dollar question (the price I paid for my ticket to Busan). “Can I still go on my trip?” The answer was an emphatic “No way.” Although I had already been crying at this point, the force of my tears doubled. Dr. Weber explained that, should something go wrong, doctors in Korea wouldn’t know how to handle it, as these drugs aren’t available in Korea yet. I rationalized that I had been working with an oncologist who had, in fact, proposed ipilimumab as the course of treatment if I had opted to be treated in Korea when I was first diagnosed. Dr. Weber then posed the question, “What if something happens while you are 35,000 feet in the air over the middle of the Pacific Ocean?” Got it. No trip to Korea. Whelp.

I moved on to the million dollar question… “If I don’t respond, what’s next?” Dr. Weber started to list my options and as he did, the sentence that kept reverberating in my head was, “This has to fucking work.” Yes, there are procedures and trials that I may be eligible for, but all of them involve either risky surgery, or require going out of state, or possible long-term hospitalization, or… they’re long shots. I was reassured, once again, that it is very likely that I will respond to immunotherapy again. This is real and this is good. But I can’t help but remind myself that the resurgence of tumors that occurred between December and March happened while I was still being infused with nivolumab. Which leads me to the conclusion that basically, I am living on borrowed time. This is also real and this is not good. Or at least, not good enough.  At least there is the also very real possibility that if these drugs can buy me enough time, there will be new options, better options… or, dare to dream, a cure.

I’ve taken my time in writing and posting this blog entry, mostly to retain some semblance of normalcy, and largely to retain some anonymity, if that’s what you can call it. I recently wrote a (still unpublished) blog post entitled, “Lights, Camera, Cancer,” which discusses the reasons behind the choice I’ve made to share my experience with Melanoma in a very public way. Although I’m still 100% committed to making this documentary, blogging about cancer for Cure magazine and writing these very personal blog entries for the benefit of both my support network and others who are affected by this disease, there are days when I want to shut the world out and just live my days in privacy. During this past week, I’ve taken a lot of solace in my routine, in my daily NPR-filled drives to and from the lymphedema clinic, in the normalcy of my teaching job (as my students don’t know that I am sick).

Tomorrow, I’m back in the saddle… the infusion chair. For those of you who might be cringing at images of me in a hospital hooked up to an IV, let me remind you of the fact that my infusions involve a cushy recliner, pre-warmed blankets, nurses with whom I have developed amazing relationships, laughter filled lunches with close girlfriends, good books, netflix binging, ZERO pain and, most importantly, drugs that have already proven their ability to kick the shit out of my tumors.

I know that by posting this now, I open the floodgates. As always, I welcome the love and support and prayers that I know will be sent from every corner of the globe. That said, please don’t hold it against me if I go off the radar for a little bit… my oncology team warned me that my side effects may be more profound this time around.  And so I say now, to all of you who have chosen to be passengers on this ride with me: Thank you. My strength is the product of you telling me how strong I am. My fight is only so fierce because I have a life filled with beautiful people worth fight like hell for. And please know that, as dismal as this post may seem, I am still waking up and facing each day with positivity and humor. I am still here. And I am still me.

P.S. If there’s a burning question about my treatment, about anything, that I’ve failed to answer in this or other posts, please feel free to ask it in the comments section of this blog. If you have a question, it is likely others have the same question, and if I field them here, the answers will be available for those who may not be inclined to ask.

 

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20 Responses to back in the saddle again

  1. Erik says:

    Your strength comes from others, but also from within. Sorry for the bad news, hopeful for the better news to come. Stay strong, stay determined. They say it helps! Love you!

    Liked by 1 person

  2. Nic says:

    I don’t think I’ve said it before, so… thank you for being honest every step of the way and letting us around the world know what’s up. Best of luck. I hope with every fiber of me I can wish through that the healing goes strong, kicks ass, and any negative side effects will be mild as possible.
    When you feel better, I’m looking forward to an explanation on how to play 3:33. 🙂

    Liked by 1 person

  3. Lucy Walker says:

    Oh I love you so much. Your voice is so unique and brilliant and reaches out and touches me so skillfully and I’m so grateful to know you. I just fucking wish this was not happening to you. What can we do to help? And feeling so ridiculous for being so busy right now when all I want to do is be with you nonstop. Please give us specific requests if any come. We love you so much and will do anything and everything to bell. 💗❤️💗❤️💗❤️💗❤️ Plus please tell us how to play 3:33 you know I am all about tree tree tree and three three three!!

    Liked by 1 person

  4. Diana says:

    Jen, I am so sorry that you have to go through this. I do have one question, you said” Yes, there are procedures and trials that I may be eligible for, but all of them involve either risky surgery, or require going out of state, or possible long-term hospitalization, or… they’re long shots. ” What are the out of state options.? Please let me know when I can see you. Big hugs and kisses. D-

    Liked by 1 person

  5. Aunt Roni says:

    My Beautiful Jen. You are amazing. How brilliantly you share and help so many around you living close and living far away is helpful and loving. My wish is ease, no pain, quick response to the meds and great movies on Netflix and plenty of Sunshine. Sending you lots of love and support

    Liked by 1 person

  6. Elana Logsdon says:

    Busan Halloween trip cancelled. F that! I remember Halloween at the Mexican restaurant we rented out there! I was sad to hear you canceling that. But gotta do what ya gotta do. Stay strrrong! My bike accident almost had me cancel an upcoming trip myself, but for now, I think I can still go, although still trying to prepare myself if I have to cancel.

    Liked by 1 person

  7. chacha says:

    As you know living with cancer is a misnomer. Are we actually living with it? I’m going to say this about you and how you’ve decided to deal with this rotten hand. You’re like a bronco rider on this huge fu**in steer that wants to throw you off, but you’ll not have any of that. Kick that MF. right in its balls. Grab it by the horns and say Hell NO… I won’t go. That’s how I see you. And like most humble cowboys after each ride you slide off into the sunset to think about the next ride. Only for you it’s not exactly the thrill. But they know too, one of these times that ride could take them out… YOU GO COWGIRL… Busan will still be there…And you will get back. I love you to my core.

    Like

  8. Lauren says:

    Hi Jen, I’ve just come across your blog through Instagram and I’ve been utterly blown away by your writing. You are unbelievably gifted. You’ve put into words so clearly many of the things that I’ve had going through my head during my own experience with stage 4 melanoma. Wishing you all the best for your treatment. It’s worked before, it can work again. Look after yourself and your immune system. Love Lauren xx

    Liked by 1 person

  9. Jarod says:

    thinking of you over here…

    Liked by 1 person

  10. Jen, you are an inspiration. I think about you every so often when I go to class at Revolution Yoga. Thank you for posting your latest news. I think this cancer and all the emotional life it entails IS your life’s work. You are living it now. The fact that you are sharing it will, I hope, inspire many people. It certainly does me. By sharing your experiences in such an engaging way, you are fulfilling your destiny. I spent much of my life just surviving – I had to, starting from the day I was born. I endured excruciating psychological abuse from my parents growing up, and have been in therapy consistently my entire adult life. I’m just beginning to live now (as opposed to just surviving). And I realized recently that the work I’ve done in therapy IS my life’s work. I want to share my story with others too. I only realized this after enduring 3 recent life threatening conditions. In August of 2013 I was in the hospital for a week with pericarditis. In July of 2014 I had a hysterectomy because I had early stage endometrial cancer. In September of 2014, this autoimmune disorder, called eosinophilic granulomatosis with polyangiitis, became active, and I was treated with Rituxan infusions. I’m going to have to have another round of treatment for it. There is good scientific evidence that autoimmune disorders that occur later in life are often correlated with the degree of abuse one endures as a child.

    I wish you a full and speedy recovery and look forward to seeing, hearing and reading your work.

    Love, Miriam

    Liked by 1 person

  11. Jilly bean says:

    I love you. That is all. Reschedule your Busan trip for when you can travel and I’ll meet you there and we’ll play the shit out of 333. Last week I finally perfected my Pad Thai recipe and you need some. xo

    Liked by 1 person

  12. Can says:

    I keep saying that”this isn’t fair, this isn’t fair, this isn’t fair”. Always praying that you have the strength, hope and faith to continue on this long journey. Keep writing, keep loving & above all, keep believing. You have touched so many just being who you are. Everyone that matters to you is taking this journey with you through your raw uncensored thoughts translated to words. Write every day.

    Liked by 1 person

  13. mmwm says:

    “Yes” to the comfort of routine and feeling normal in the midst of scary, hard situations. Sounds like you are balancing the need for privacy, normalcy, living your ordinary life with the blogging and filming, the thinking about and talking about cancer. Thank you for sharing yourself with us.

    Liked by 1 person

  14. Heather Ribb says:

    Jen this must be terrifying. I can only imagine. You can fight this and I know you will. Please let me know if there is anything I can do.

    Liked by 1 person

  15. Amanda says:

    You are so brave. Keep fighting. Kick the shit out of this disease. ❤

    Liked by 1 person

  16. Tom Decker says:

    Fuck Cancer! Thank you for sharing this! Ram slam slam forever!

    Liked by 1 person

  17. sclazarus says:

    Thank you for continuing to dive deep and share the process and pain. You are a fierce fighting lion with an amazing roar. I love you.

    Liked by 1 person

  18. Hilary says:

    My hearts entangled in those rotten tumors….I love you….

    Liked by 1 person

  19. Trudee Romanek says:

    Jen, I’m a friend of Sandi Porter and a writer. I know that fear that the characters in your head could die there unless you have time and opportunity to share them. Let that fear feed your strength to fight this f’ing disease that wants to control you. You are an incredible writer and I will be hoping like hell that your words continue for a very, very, VERY long time to come. Thank you for sharing your journey so eloquently.

    Liked by 1 person

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