Friday, August 5, 2011

Here's to Not Moving On

Tumors have an incredible—maybe even ironic—sense of humor, timing. At least mine did. I’d had a six-month cough and who-knows-for-how-long lumps in my collarbone area before I finally saw a doctor. It was the same day that I rocked an interview for a new job and the day before I was headed to upstate New York for a month-long writing residency that I was awarded.

I thought I was in the clear when I told the Ear, Nose, & Throat specialist, “No, I haven’t had night sweats or fevers.” I thought that the lost weight, sleep, energy, and appetite were part of a post-lay-off depression. I thought the writing retreat would lift me up.

Not true.

I cancelled New York and turned down the job. I gave up writing. I did, however, get night sweats and low-grade fevers for the next twenty-two days. And just for fun, I got head-to-toe hives from a newly discovered allergy to amoxicillin the weekend before my surgery.

Well played, tumors.

I was officially diagnosed with Stage 2b Hodgkin’s in April 2010. I was 32, unemployed, uninsured, and poor, having cleaned out my savings just to get diagnosed. The irony? When I first noticed the symptoms, I had insurance and saw a PCP, but she wasn’t too concerned. More irony? I was denied emergency MediCal because my cancer wasn’t bad enough. (That’s a blog post in its own right.) After a financial freak out, I finally received emergency medical coverage, not insurance, through San Diego County. I had to swear that my net worth was zero.

But science is funny, too.

The original game plan was eight infusions of ABVD + high-dose radiation; then it was four infusions + low-dose radiation. Never mind that I was in remission after four. Stopping treatment then was unheard of for my case. In the end, I survived twelve chemo sessions but no radiation, give or take six months. I was hospitalized for pneumonia when I was almost finished, however—my ten-day Thanksgiving staycation at the ritzy Thornton in La Jolla delaying treatments for over a month.

While I make an effort to avoid speaking in hyperbole and sweeping—my god, the sweeping—generalizations, I must admit that hooking up with The Hodge was probably The Worst Day of My Humble Life. (See, I even inserted a “probably” to save myself the trouble of printing out this page and literally eating my own words.)

Forget heartbreaks and drama, discovering horrible secrets, house-shattering arguments with family, bad grades, ugly days, and the Boss from Hell. That April was exactly what T.S. Eliot described in The Wasteland as “the cruelest month,” kicking off a surreal and challenging year.

I think most survivors feel this way, having seen those dark places. Our initiation into this unknown territory feels lonely, even when our caregivers and friends stand by or carry us. I’ve discovered, though, the unparalleled support of fellow survivors and thrivers—a secret society of like-minded mAsskicking individuals who corroborate and collaborate, swap stories and show off scars. Instant bonding is known to happen, commiseration in masses (pun fully intended).

But it’s the “after” that’s difficult, when we need the most support and empathy. We must be patient with ourselves, remembering that healing is not about moving on. It’s about moving.

So I am. Slowly.

I’m writing, driving myself around town, applying for jobs, re-watching The Wire with good friends, brainstorming projects, enjoying food, learning drums on a beat-up kit in the middle of a cramped living room, meeting and conspiring with new people, traveling, reflecting, remembering, sometimes slipping, sometimes crying—out of guilt, relief, astonishment, but mostly a quiet gratitude.

Even in the act of moving, one can and is allowed to stumble.

Yes, the business of having cancer is individualized. Yes, each story is unique. Yes, it IS lonely. But we don’t have to be alone. My story could be your story. Your story is my story. All of these stories intersect and have traversed the same ground. These stories are on a continuum, forging and adding to a narrative much larger than we expected, one with deep histories and global trajectories.

Yes. This…is Our Story.


  1. I feel compelled to comment but keep staring at the empty Blogger text box. There's not much to say except beautiful, and thank you for writing!

    Oh, but now that I begin to type, this comes: I think you are right. I'm in a similar place (albeit with a completely different type of traumatic experience), and I am not sure it's possible to "move on" from something like that. It's not a lamp that can be simply set down. Yet, the thought of moving WITH this stuff seems incredibly heavy. Hmm...

    Anyway, hugs :-)

  2. Healing is not about moving on. It's about moving. I so needed to read this.

  3. totally agree with val. it is all about moving. in a perfect world ya move forward. ya just need a "compass" sometimes to find the right direction...

  4. LOVE the picture, the story & the honesty!! You kickass, my dear!! xoxo

  5. My father battled stage 4 gall bladder cancer. A rare form of cancer at an incurable stage. It wasn't a fair fight, but he fought with everything he had, and so did we. Our fight to get him the care he needed (he only had city insurance) sounds much like yours. He also had just started a new job, planned to travel to Peru for the first time in nearly 20 years, and was getting ready to walk me down the aisle. Cancer took irony to a whole other level with him – he didn’t even have a gall bladder anymore when he was diagnosed. He lived longer than doctors expected, but he didn't live long enough for me.

    After he passed, I felt paralyzed. My family, my life, my relationship with myself, changed forever. The path that I thought I should follow – so clear to me before his diagnosis – was wrong. It had changed, only, I didn’t know where to go. I didn’t know how or if I could move forward.

    I'm grateful for the warriors I meet along my path - the masskickers and the caregivers - because people like you, Jenn, help me see that the path isn't blocked, that I can still move. We may stumble over rocks and trip on cracks along the route, but there are those out there who got around them, who managed to move even with so much holding them down. That was my father because he fought. That is you because you survived.

  6. Thank you for this. Having lost my second mom to cancer and now writing a memoir growing up with her, I needed these words today to remind me of how courageous and upbeat she was during her fight, though there were days when the clouds hovered and she struggled to even smile. You, my dear, are light. Bless you and may you continue to heal and manifest your warrior. Mad love!

  7. Yolk E - YOU are an amazing woman and friend. Even though the idea of moving "with" this stuff is heavy, I prefer it over ignoring, forgetting, treating it like a bad dream. There's nothing wrong with it being part of us, right? :) HUGS to you, lady.

    Val - Wow. I needed to read YOUR comment. Seriously. The whole part about moving over moving on hit me as I wrote about a dozen versions of this post. Thank you feelin' me.

    Eric - And that compass is COMMUNITY, like mAss kickers!

    Kristen - AW. I'm so lucky we crossed paths. xo

  8. Melissa - My soul sister, indeed. THANK YOU for sharing this part of your life with me, us. Your father IS a survivor because you're still here keeping the light on. I'm so sorry for your loss, but damn I'm grateful he had a daughter (and familia) like you. Caregivers are thrivers and survivors, too, you know. People like you are our backbone. Love you much, lady.

  9. Vanessa - We are definitely part of that same fierce light! When I saw (and heard ;) you at VONA, I thought, that is one woman (friend, writer, mother) everyone should have in her/his life. I regret that we didn't get to talk much during the week, but please know the impact you made on me and continue to do with your comment. For real! I love LOVE that you're writing your mom into a new life...what a damn beautiful rebirth. xoxo

  10. THANK YOU for this, Jen. I love your writing. You capture the pure strength of one who goes through something so much more difficult than anyone else can imagine. My father was always a jolly man, my own Buddha belly (that's what my sister and I call him, haha), and when he needed a heart transplant that was drug-induced, it almost broke our family. I was at the hospital every day during high school, and he was transferred to four different hospitals because of his insurance before he got his new heart at USC. An ironic story: the day he was going under the knife, the moment before they cut him, they realized that the heart didn't fit his current valve system and decided he couldn't get the heart. He was on top of the list because he was so sick, but the heart didn't fit him so they stopped the procedure MID-procedure. But, because life plays fair sometimes, the very next day they found another heart that fit him exactly and did the heart transplant the next day. I really find that same strength, the same humor, that you have was in my dad as well, he was able to laugh at things, able to joke with the nurses, able to make my sister and me smile even when he was as skinny as bones. I think that's a true strength that's hard to find in people, and I really thank you for sharing your story. You help us realize that there is a fight to be won, even when it's a lonely road.

    <3 melissa sipin!

  11. Dear Jen -- I was so, so touched to read your story, and as Melissa says, your humor is a source of such courage and strength, and I'm drawing upon it this very moment. Wowzaaahs, you are a damn funny lady, and irony ain't got nothing on you. When I was 21, my father was diagnosed with late stage nasal pharyngal (sinus) cancer and then came the next years of chemo and radiation and suffering. He was such an athletic, fun-loving man, a chemist, a carpenter, an artist, a fantastic dad. He lost everything, his strength, his ability to move at times, his energy, and eventually much of his hearing, but most of all I think it broke his heart to be sick. He never recovered completely, but he lived for 8 hard years, and when he was diagnosed with liver cancer when I was 29, it broke my heart and that of my whole family's. He passed away 6 months later. Reading your article, I realize how much I would love to hear him laugh again and to have been able to make him laugh during those dark years. I think reading your blog would have been good for him, and it is certainly good for me now. You have the strength to prevail, and the joy to do more than survive. You're right, this is our story. With love, Serena

  12. You're definitly right about moving. It's easy to say that you've "moved on" from the past but actually getting back into the world and doing what you used to do is another story. I loved reading this post - witty&concise :).

  13. Made me cry, dot, made me cry. :)

  14. So stoked to see you writing! And stationary biking . . and drinking a soda . . . and looking at an electronic device . . . and just being your sassy self in general! You rule! Can't wait to read more . . .


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