Archive for November, 2011

Lymphoma Jeans

I’m just going to say it. I’m 150 pounds.

Normally women hide their weight, and last time I hit the 150 mark, I sure tried to cover it up. I exercised one summer to get down to 140, and over the next year made it to a slender, pretty 130. Or so I thought. Turns out it was “unintended weight loss,” one of the many classic symptoms of lymphoma. And it wasn’t pretty. It was pretty scary. My pallor, my frail physique, my unstable body: I needed weight and I needed it fast. I dropped to 125 in the hospital, and worried that if I lost my appetite from chemo, I’d starve to death, quite literally. Fortunately, salt and voracity were my friends during treatment, and a post-treatment elation binge (unintentional) got me back up to the 1-5-0 again.

But honestly, I can’t motivate myself to exercise. I savor the weight, the way my stomach sticks out slightly. Whenever I want to rue the fact that I don’t fit into my skinny jeans, I remember that they were lymphoma jeans… and who wants those, am I right? I savor the experiences of eating, of feeling so refreshed, so stimulated, so intrigued by the wonder of the delicacies that I never quite could experience while I was sick. I love eating and feeling full, instead of eating insatiably to stay alive.

When I look back at pictures, it’s clear I look different. But “20” pounds doesn’t show, because I never should have been 130 to begin with. I submit the pictures as proof.

My weight is a testament to my health, and I have good reason to have good body image. In short, screw scales. And lymphoma jeans.


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A Beautiful Mess

You’ve got the best of both worlds
You’re the kind of girl who can take down a man,
And lift him back up again
You are strong but you’re needy,
Humble but you’re greedy
And based on your body language,
And shoddy cursive I’ve been reading
Your style is quite selective,
Though your mind is rather reckless
Well I guess it just suggests
That this is just what happiness is

Yep, that’s me.

I just got back from the Jason Mraz concert. Literally, the man has a following. There’s girls in the front row doing synchronized dances and nearly convulsing to the sounds, resembling conversion experiences. People were dancing in the aisles of Carnegie Hall. One couple got engaged mid-song. My breathing, tight from anxiety and quickened from caffeine, soon relaxed and slowed. I even felt my head spin for a second and had to catch myself from forgoing muscle tone… I almost thought I was passing out but I had just gone into this meditative or trance-like state. He said it would be transcendental, and he wasn’t kidding. The man’s a prophet of love and happiness.

His setlist is a thematic homily, replete with reflections at every turn. His songs speak to me, speak through me, speak for me: each song evokes a mood that I relate to, or shares a voice of someone important to me. I learn a lot about myself. I’m nostalgic, hopeful, jubilant, resolute, wistful. I want to change my attitude. I want to be a better person. I want all of the beautiful mess he describes.

He made us tell someone else: “I won’t worry my life away.” He made us scat together, the levity of the nonsensical syllables resounding in laughter. It was a sing-along that united the audience in little ways. His confidence, his enlightened speech, his wholehearted song made his silly quips, tics, wordplays infectious and entertaining.

He told us: “Life, the world, isn’t coming at you, it’s coming from you.”

After congratulating the newly engaged couple, he congratulated all of us. “You did it!” he proclaimed. “Whatever obstacles you overcame to be here today. If you’re here at Carnegie Hall tonight, you made good decisions.” At that moment, I felt him congratulating me for my long lymphoma journey, since his last concert at Jones Beach two years ago. I made it.

The mantra/closing song, the title of which was also printed on my ticket, was “You are Loved.”

This blog post might not really be about cancer, but it’s about me. It’s about learning how to live your life to the fullest, and Jason gets it. His message says: Why shouldn’t we be forever happy? Why shouldn’t we always love each other? Why are we self-conscious, self-restricted? His shows give me a new lease on life, a surreal reality check. I can’t fathom how one person could love everyone, everything, enough to preach it, to make it his mission. Everyone in that audience felt loved, felt joyous, felt refreshed and fulfilled. How someone can make that connection effortlessly with thousands of people. Even if he’s high, even if it’s an act, his rhetoric, his craft is being used for good.

“You are number one, you are a wonder, you are wonderful.” Life is wonderful.

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I’m thankful.

When I got into many colleges, my high school history teacher told me: “What a great problem.”

That is what my life has become. A great problem.

Because for all of the painful experiences of loss and illness, for all the stress of school and of relationships, for all of the hard days and long nights… I’m alive. And any problem is a great problem.

I could say what I’m thankful for, but I already know. I’ve made a “positivity journal,” filled with goals, blessings, quotes, accomplishments, and musings about the glories of life. Perhaps some day I’ll share those with the world.

But for now I’m thankful for another day. And I really, truly want to stop being the person who bemoans their schoolwork. Last year’s me would hate me right now for being so annoying and ungrateful.

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Great article on Scanxiety

Happy Thanksgiving! I have countless blessings for which to be thankful.

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Reality check

Whenever I doubt myself, whenever I think I didn’t do enough for the Band while I was sick…

My friend Art: “You were running around with tubes hanging out of your arm carrying handles of Rubinoff at two o’clock in the morning. You’re right, you really didn’t meet expectations.”

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Even if I’m not actively blogging, reflecting, ruminating, survivorship is always on the brain. It is the brain now. It’s been rewired and there’s no way around it. How do I know this? Because as I was walking in the rain tonight, I wanted to sing a Jack’s Mannequin song out loud: “I’m alive, and I don’t need a witness to know that I survived.” And then another song lyric echoed, this one from Joshua Radin: “For the first time in such a long, long time, I know… I’ll be okay.”

And that’s what it comes down to. The stress, the jubilation, and everything in between represent my survivorship, because my survivorship is life now.

I’ve had the good fortune this week of some humbling, down-to-earth experiences to remind me not to succumb to Harvardian woe-is-me rhetoric (yes, the course I’m taking has given me a rhetorician’s view of the world). My Delta Gamma faith group–seeing girls genuinely rejoicing in Christmas, believing deeply and confidently without seeming proud or judgmental. Inspiring my friend to admit true love and to hold onto it, and hearing that it worked. Taking in the Cantabridgian autumn, and remembering last year’s crash landing to end treatment–I was surfeited with wonder, joy, and natural beauty, yet woefully nostalgic and worried it wouldn’t, couldn’t last.

I’m still worried. I’m going to throw it out there. I can tell I haven’t quite kicked my cold from last month, my veins now make an surprising bubbling sensation from time to time. Sometimes I feel like I can’t breathe–surely, I am ill. Sometimes I cough spontaneously–surely, lymphoma’s back. I’ve twitched while sleeping a few times, I had a nightmare-like experience where I wanted to get up but I couldn’t. It’s probably nothing, but I don’t want to even think about what it could be (even though I can’t resist worrying). I have another intense end of the semester, and it’s been a long time since I breezed through one with finesse. Yet I keep plucking on. I survived an intense week of writing, band guidance, and back-to-back Shaun visits on shockingly little sleep. I’m fatigued at times, but at others I’m exaltedly alive. I want room to breathe, time to think, yet I’m making it through this semester without seeing a psychologist.

It’s amazing how little we know. We don’t know why I had lymphoma, we don’t know if or how it could be triggered again. We know not what will happen tomorrow. So I’ll just hope, pray, celebrate another day.

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It’s interesting to see that I haven’t posted in a while. Hopefully, this indicates that I’m handling my survivorship with confidence, rather than floundering to the point of forgetting this blog.

Yesterday, November 3, was a day of celebration. Yesterday was my cheeseversary.

When I was on ramped-up chemotherapy, procarbazine pills limited my ability to digest tyramine, which is found in fermented and aged foods, of which cheese is the worst. I literally counted down to the day when my body could be liberated from the diet of mostly meat and carbs, waiting to restore the rich flavors that simple foods often lacked. That day last year, I feasted on pickles, olives, cheese, and prosciutto at midnight. Tonight, I bought Jarlsberg, prosciutto and mozzarella rollups, Peppadew goat cheese, and Boursin for all of my friends to enjoy. Oh, and a hard cider at the first Senior Bar.

I feel a little awkward when my friends congratulate me on my cheeseversary. It’s admittedly childish or simply silly, but I genuinely feel that cancer survivors deserve to bask in their glorious health. In fact, everyone should: everyone should take the time to feel so appreciative and triumphant for succeeding in another year of life.

I’m gonna eat mozzarella and enjoy it, dammit. Life is short.

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