don’t think twice, it’s alright

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.

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42 Responses to don’t think twice, it’s alright

  1. Simon says:

    Jen. Thank you. Love you so much. Simon

    Like

  2. John Bocskay says:

    Jen, since I met you, I’ve always thought of you as a beautiful, gentle soul, but reading these words, apart from the sadness I feel, I’m just struck dumb by the courage and the grace that radiates from you, as you share very publicly what has been the toughest battle of your life. Please know that I carry a piece of you with me, and that your strength and fire will continue to inspire me long after you are gone. I wish you peace, dear friend, and I send you this humble message of thanks, respect, and love.

    Like

  3. lucy says:

    lucky you’re so good at the words, cos I don’t have words for how beautiful you are, and these past few weeks, I couldn’t have believed, even knowing you, how beautiful it is possible for a woman to be… brava. you are the greatest winner I know ❤️

    Like

  4. Dear Jen,

    I’m so happy you relocted to Busan so many years ago. You made a tremendous and lasting contribution to our community. Your spirit radiates in the people who are still here and in the events which continue to take place. Thank you for being such an amazing supporter and friend of mine. In most ways, every Poetry Plus event is dedicated to you. I’m a braver and stronger person from knowing you. Thank you so very much with all my heart.

    Like

  5. Diana Candella says:

    Jen, you are such a beautiful person. I think of us as children running the beaches, playing in the water, and climbing through people’s backyards to see each other. They are such precious moments. You are a pillar of strength. Your friends and family, are so lucky to have had you as part of their lives. You are an extraordinary woman. Your journey has been and will continue to be an adventure filled with so much love which will live on forever. I love you.

    Like

  6. Eva says:

    JEN.. some of my memories about you is like old pictures and firms in my life..
    All my history of EVAs, you were there.. you were there with me, we drank together, we smiled together, we argued together and we hugged..
    suddenly I figured out that I have a friend who have beautiful soul and heart and I just say thank to you and hope this is not too late to said you are the hero in busan, you are the history in busan..
    You are the strongest person that I know and there is no doubt who’s the winner in “jen vs cancer”
    Please give big hug to Oscar for me..
    fuck!
    Jen, you are the queen and I love you from your second home away from home busan..

    Your friend Eva.

    Like

  7. Samantha Richards says:

    Jen- you are an amazing woman who has seen and done so much. You are an inspiration to us all. I had the honor of being your friend in your younger years and have enjoyed following you through social media as you conquered the world. We are all blessed to have you in our lives. I will miss you but will never forget you.

    Love you

    Like

  8. Gus Swanda says:

    Jen, I wish I had better words to describe the sadness I am feeling, but more importantly how grateful I am. I’m grateful to you for showing me that a person can live a wonderful and successful life on their own terms, grateful for allowing me and the rest of the world to walk beside you on this vacillating and tumultuous journey, grateful for reminding me that the ‘deadhead’ inside of me is still here and needs to be let out more often, and grateful for knowing you. I don’t have the lexicon to describe the enormity of these feelings other than to say that I know how truly beautiful you are. I love you, my friend.

    Like

  9. Hilaryful says:

    Phewwwwwww ….you take my words away..AND you know that right there is a miracle…..I love you!

    Like

  10. Bobby McGill says:

    Oh, wonderful Jen. Been walking this rock for five decades now and you’re right up there at the top of the list of the things in life I call “wonderful”. Love you now. Love you always. Miss you now. Miss you always. See you again out there I’m sure.

    Like

  11. mmwm says:

    I’m happy you have been able to wind things up the way you want, with your clear, shining, unique voice unextinguished though the body may soon be; spending time with friends and family in glad/sad circumstances; noticing the kindness of others; sharing yourself with us. I mean, fuck, I want you to live, and I definitely want to meet you on the other side, but your acceptance and love are beautiful to witness, Jen. Godspeed.

    Like

  12. Judith lamberti says:

    Such a strong womem to share this time with all .wishing all the peace with God .

    Like

  13. Kelly Senzon says:

    You are light, You are peace, You are amazing.

    Like

  14. sclazarus says:

    Jen, thanks for never ceasing to do you, open and true through and through. I love you so dearly.
    [i carry your heart with me(i carry it in]
    BY E. E. CUMMINGS
    i carry your heart with me(i carry it in
    my heart)i am never without it(anywhere
    i go you go,my dear;and whatever is done
    by only me is your doing,my darling)
    i fear
    no fate(for you are my fate,my sweet)i want
    no world(for beautiful you are my world,my true)
    and it’s you are whatever a moon has always meant
    and whatever a sun will always sing is you

    here is the deepest secret nobody knows
    (here is the root of the root and the bud of the bud
    and the sky of the sky of a tree called life;which grows
    higher than soul can hope or mind can hide)
    and this is the wonder that’s keeping the stars apart

    i carry your heart(i carry it in my heart)

    Like

  15. Annemarie Beattie says:

    I feel blessed to have ever met you Jen,I feel privileged to have shared in your journey of writings and hope to see your Ted Talk.Peace be with you ..

    Like

  16. Ed says:

    Jen I humbly just want to thank you for sharing your journey with me. It’s giving me strength when I’ve needed it most especially today as I go to my oncologist appointment. You are such a beautiful, eloquent and strong person and I wish we could have met. Your memory will always have a place in my heart. May you have peace and be pain free.Know that you are loved. Ed

    Like

  17. Lynn Brown says:

    I didn’t know you as long as our other Silla colleagues did. But I’m glad that I did get to know you for the time we were at Silla together. I remember all the students loved you and enjoyed taking your classes. You were always happy everything I saw you at work. I also enjoyed the times we did get to interact together outside of work. I’ll be thinking of you and your family. Love, Lynn chingu.

    Like

  18. Lisa Crandall says:

    Jen,

    I have never met you although I would have loved to. I so admire your spunk and bravery in sharing your journey through your cancer. Through people like you i have come to understand what my husband went through but would never share. I wish you peace in your final time and lots of love and laughter from family and friends. You have been SUCH an inspiration to me and I know from what I read many many others.

    Thinking of you and sending love.

    Like

  19. Sharon. Teig says:

    This is your cousin..Sharon in ca. How fortunate for me that I got to meet you ..you are a gift to me..as you are to so many..I’ve read all your blogs..your words are also a gift..of how to live life and how to walk the finite path..i enfold you in my arms with love and respect.here’s to the light of forever..love..love..love
    .

    Like

  20. Brian Kilrain says:

    Jen, I’ve always been inspired by your passion. From now on, your example of courage will lift me up too. ❤

    Like

  21. Chad Matey says:

    Jen,
    I didn’t know you half as well as the people responding here but I do remember you from playing at the open mic at Ole 55. You would come up to me and give me a hug and that was really cool cause a lot of times I needed it. It always felt genuine as did your singing. You have a great spirit and soul and you left those footprints with a lot of people. 🙂

    Like

  22. Andrea says:

    There’s so much to admire in who you are, Jen; your bravery, strength and clarity throughout this entire situation is immensely touching and inspiring. Thank you so much for sharing yourself with the world, what a beautiful light you have – all our thoughts and prayers are with you.

    Like

  23. Hi Jen, I’m awestruck by you and your life and your courage and strength and am soooo pissed off that we didn’t meet sooner. Also because I really wanted you to teach me the real trick of the crazy switch-up Thursday night poker games! Candy just told me about your TedTalk and I can’t wait to share it with the world! Your journey continues Jen. You are in the hearts, minds and souls of people everywhere. Love and Peace xoxoxo, Candice

    Like

  24. lydia8835 says:

    Dearest Jen,
    Burt and I love you. Thank you for embracing the unthinkable with such courage, humor, and strength. Your voice is incomparable and will ring in the minds of everyone who has ever met you.
    A TED talk how fabulous. The epitome of an English teacher’s desires. And Adrian Brody too!
    We love you and will think of you forever and the impact that you have made.
    ❤️❤️❤️Lydia and Burt

    Like

  25. Loren says:

    Jen you are an inspiration to all!

    Like

  26. Dear Jen, This is Alex, April’s former roommate in Montréal–we only met once when you came to visit several years ago so I don’t know if you remember me but wanted to send you my love anyway. I have been reading your blog and wanted to thank you for so generously sharing your story with so much honesty, humor, thoughtfulness, and warmth. I will look forward to listening to your TED Talk, (assuming it was recorded–hope so)! I am thinking of you and sending lots of love from Montreal as you continue on your way. xox Alex

    Like

  27. Jen,
    I feel fortunate our paths crossed and that I was part of that well-deserved standing ovation. We haven’t known each other long but your talk, this blog, and you yourself have been so incredibly unbelievably inspirational to me. I am quite sure your words will live on for a long time and inspire countless others – whether or not they are fighting cancer.

    Like

  28. jennifer bennett says:

    You are the ultimate winner. You are a winner because you get life – you understand it and know what to do with it. One of my favorite quotes is from John Lennon when his teacher asked him what he wanted to be when he grew up and he replied “happy.” Teacher said he didn’t understand the question; John said he didn’t understand life. You, dear one, do. When I met you, I thought “now there’s someone sucking the fucking marrow out of life.” I had wanted to teach abroad – I didn’t – and loved hearing your experience. I loved hearing all about your life actually. You inspired this middle-aged mama before I knew you had cancer and you continue to do so. Thank you for your beautiful words and the inspiration of your spirit and life. I’m forever glad I met you. You will always kick ass, in the next form as you do this one. So much love to you!

    Like

  29. Amy says:

    These cancer cells have nothing on you.
    When they thought they would take you down keep you down, they ended up giving you Adrian Brody, mobie, a village of fans, and a posse of people who celebrate you and your amazing glorious spirit.
    Fuck this cancer, Jen.
    fuck all of this that is being taken from you,
    KEEP all of this light and love, Sister friend, and know that What you are going through, we are all with you, in different and powerful ways.

    Like

  30. SUSAN LEVINE says:

    Jen, I don’t know that you remember me. I met you last year at a yoga class and we spoke briefly. You gave me your card with your blog information on it, and I have since been following it. I was deeply saddened to read your last post as I was hoping beyond hope that your treatments would be successful. I was able to access your TED talk via Livestream and was deeply moved by it. You’re an incredible human being and an inspiration to everyone you have touched. I am so fortunate to have met you although it was just a transient encounter. You left a mark on me which I will hold forever in my heart.

    Like

  31. mellyelly says:

    Jen, I know we’ve only maybe once or twice (Adam’s cousin here) but I’ve followed this all the way. I am so inspired, scared, and in awe of you and your story. I am so glad you’ve had so much love and joy in your life. You leave behind a legacy of positivity. You will never be forgotten. Wishing you peace ❤️❤️❤️

    Like

  32. Simone Lee says:

    Your voice will be carried throughout countless lives, by countless people, for a beautifully long time. You’ve made a lot of peoples’ lives better for knowing you, Jen. A world of love to you, always ❤

    Like

  33. Marla says:

    Jen, it has been an honor and a privilege to support your TEDxVeniceBeach talk in development, production, and post. I feel thrilled that you wrote you were so happy with how it turned out, and I am so moved to witness your courage. Sending you love, xoMarla

    Like

  34. Karen Johnson says:

    Jen,
    meeting you this past summer was a blessing. Your light and strength will shine forever. You left a very special mark on this world. You will be here forever because so many loved you

    Like

  35. Thomas M. Decker says:

    Jen, today you are free! Free of pain, free of the body that failed you and free to be the STAR and LIGHT that you are! I anxiously await the video of the Ted Talk but tonight I will listen to the soundtrack on youtube that you created and toast the full like that you lived! “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.”

    Like

  36. Lisa M. Ries says:

    honored to have met you and to have shared an unforgettable conversation with such a brave and genuine soul 💗

    Like

  37. Lisa M. Ries says:

    jen, so honored to have met you and to have shared an unforgettable conversation with such a brave and genuine soul 💗

    Like

  38. Jen,

    I am so very proud to know you, to learn from and be inspired by you. Thank you for strength, your generosity in sharing all. You are so 100% gorgeously you. How lucky are Moby and Adrian Brody to say they shared the stage with you.

    –Sam Tucker Iacovetto

    Like

  39. Mark Stempel says:

    I just found out the awful news.
    You’ve made a big impact on many peoples lives.
    Rest In Peace.
    You are loved, and always will be.

    Like

  40. liz says:

    Jen, you don’t know me and I never met you. I only came across your blog because a friend posted a beautiful “goodbye” to you on Facebook. It led me to your blog and I was immediately drawn to your light. Your experience rattled a recent memory of mine that I hope you don’t mind me sharing. Stranger to stranger. I am not a victim of cancer myself but my mother was. Four years ago I dropped out of my own life in California to head home, to Austin, TX, to be with her. Some called it to “sit death-watch”. During the months prior, we struggled with doctors saying one thing and her hearing something different, I struggled with trying to get her into hospice, to get her support. Bless her heart, she was not ready to toss in the towel. I don’t know why I insisted. I thought it was the “best” move. Sad. She, nor my dad, realized what was happening…even when it was very clear to most of us around her. For the last 3 weeks of her life, I sat with her, bed-side in her room…the room I always would find her while growing up. It was excruciating to watch her slowly come to the realization of what was happening….to have her denial turn into a form of acceptance. We had never been very close and were often contentious. But, those last weeks, all was softened and forgiven. I was able to hold on to her lovingly each time I supported her into the bathroom, or each time I spoon-fed her increasingly little nourishment each day. She slipped in and out of this world and would visit her long, long deceased father who was in clear-sight to her as if standing next to me. I’m sure he was. After one of the many phone calls to invite friends and family to come say goodbye, one of my sisters arrived from Houston, the other sister had to make a trip to Germany. Early on the morning of December 6, I woke up and, as was the custom, went to say good morning. She was deeply asleep, snoring in the ubiquitous death-rattle tone. My dad was still asleep next to her. I went to make coffee and the phone rang. It was my other sister calling from Germany. We sisters tinkered and laught in HER kitchen…the kitchen she had made 1000+ meals in. We hung up the phone and, with my coffee in hand I went back to her room to sit and talk as I had been doing for the last 3 weeks. But, she was gone. She left as her daughters were goofing off in her kitchen. I hope that gave her peace. The only reason I’m sharing this with you is that after that moment, there were tears and mourning..but strangely there was this amazing and enormous beauty. Everything was more luminous. It was as if in dying she had opened a door to a peacefulness and beauty. It was a gift she was giving me. The beauty of reconciliation and of human love. So, your words: “Death brings out a lot of beauty. That’s what I learned in that Austin trip” are striking to me. The beauty you are bringing to your family and friends is immeasurable. You are giving them a gift by allowing them to be on this journey with you. I wish you peace, stranger, and love.

    Like

  41. Jen, your words are so powerful. I’m so glad I can count you among my friends. You stay in my memory as a bold, beautiful, and brilliant member of our little community in Busan. It makes me happy to know you have had all the amazing opportunities in life that you deserve, and that your friends and family were around you. It’s so amazing you got to meet Adrian Brody!
    Rest well my friend.

    Like

  42. mmwm says:

    Jen died 9 Nov. https://www.curetoday.com/articles/in-memoriam-jen-sotham I’ll miss hearing your voice, Jen.

    Like

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