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My diagnosis humbled me

My diagnosis humbled me
November 11, 2008, will forever hold a special place in my heart. It was the day I was diagnosed with high-grade unclassified sarcoma.

And the timing couldn’t have been worse.

Just one week prior, Barack Obama was elected the next president of the United States, the culmination of my nearly two exhausting years on the campaign trail. I remember election night vividly: anxiously awaiting results in the “war room” with my fellow organizers and campaign directors, popping Champagne and reflecting on the countless hours spent training volunteers and talking to voters. I knew for the first time that I had made a difference in the world, and I couldn’t wait to see what would happen next.

Seven short days later, that all seemed so distant. Under the florescent lights of a New Mexico hospital room, I was awoken, told that the baseball-sized lump in my right thigh was not benign – as three previous doctors had insisted – but a malignant tumor poised to envelop the rest of my healthy cells.

I agonized over what I had done to cause this. Was it my diet? The Los Angeles smog? Some mutant code that had poisoned my genes?

"Then I made the horrible mistake of Googling sarcoma."

I thought for sure I was a goner. (Quick word to the wise: the Internet can often be your friend, but never to let it be your doctor.)

Within a week I was with my new oncology team prepping for surgery #2 (radical resection, awesome), and preparing myself to sign off on a regimen of radiation and chemotherapy.

It took me a while to get on board with chemo. My doctors informed me that the cancer could have been completely eradicated after surgery, and I wasn’t particularly jazzed about heightened risk for heart disease, infertility, and a litany of other short and long-term side effects.

But of course, I was fooling myself. In the interest of doing everything I possibly could to make sure I got rid of every last cancer cell, I agreed (after a 2nd and 3rd opinion, that is).

"Now two years later, certain details of my diagnosis are a little hazy."

I can’t really remember how I reacted when I heard the news, how my emotions changed, or what my doctors said to quell my persistent fears.

I do remember one thing: the scores of loved ones in my corner.

You’d be surprised by how quickly they descend upon you – friends, family, doctors, casual acquaintances – creating a network of support you didn’t know was possible. A near stranger might reach out to you because his mother is concurrently going through treatment. Or maybe you turn to a long-lost friend who understands you better than anyone else. Or maybe a family member will take the day off of work to watch Season 5 of “So You Think You Can Dance” by your bedside.

You’ll find love in all those little corners of life you’ve been meaning to dust off.

Looking back my year in and out of the hospital was spent alongside some of the best people I will ever know. My close friends demonstrated unshakable loyalty. My small, scattered family seemed much larger, much more in sync, than I had given it credit for. We remain closer than ever.

"The days went by at a snail’s pace, but the year came and went in a blink."

There were certainly dark moments: complications from surgery, a radiation burn I wouldn’t wish on anyone, and hours spent anxiously watching chemicals flow through tubes and into my chest. But I survived.

So I guess this is the part when I share a few pearls of wisdom, sage advice that came with this experience.

Healthy or not, these are simple ideas to follow:

  • Be your own advocate.

Yeah, perhaps it’s a bit cliché, but that doesn’t make it any less profound. There is no other person who knows your body quite like you. Just six or so months prior to my diagnosis, my tumor was but a small lump I could feel under my thigh. I hear people making silly excuses for these things all the time: “it’s been there for a while,” or “it’s nothing, my doc saw it already.”

Let me be clear: I don’t support hypochondria. But I do support intuition and observation. I didn’t feel good about the lump in my thigh, so I kept a close watch on it. As it grew, I sought medical attention. I wish I had been more discerning in my choice of doctors at the time, because my rapidly growing lump garnered little to no attention. Before I knew it, I was in the middle of an election, working 100-plus hours a week, with a malignant “baseball” lodged in my thigh.

That’s when I asked for help, and not a moment too soon. The tumor was unsightly – benign or not – and it had to come out.

  • Don’t dwell on “lost time.”

When I look back on my lowest points during treatment, moments of sheer frustration and indignation, I feel embarrassed.  I was most concerned about what I call “lost time.” I would watch the Presidential Inauguration from the hospital waiting room, and I would still be there night after night as my campaign colleagues moved to Washington D.C. to take up jobs in the White House. They’d be drafting memos for the most important man in the world as I sat in a hospital room connected to tubes.

Yeah, it sucked. But every second I spent drowning in self-pity was time I could have spent appreciating the immense amount of love and support around me. It was a time for gratitude and reflection, not regret. And luckily, I learned this lesson early.

  • Embrace the wisdom of those around you.

I found it invaluable to speak with those who have been through it (whatever “it” might be). There was something therapeutic about being able to relate to others – young and old – about their experience with this disease. No, it wasn’t a delight to find out that the young girl in the opposite wing – the one with fluorescent red hair – had just been diagnosed with Non-Hodgkin’s Lymphoma. But she laughed as she warned me to stay away from hospital cheeseburgers (not a problem) and to embrace the lack of sleep by learning a new trick.

And off my mom went to search for yarn and knitting needles. We just can’t ignore these things that make us human, awful as they occasionally may be. But we can talk ourselves through them, and we can find solace in others’ words and solutions.

  • There’s beauty in vulnerability.

Any decisions I made in the first 23 years of my life were based on an assertion of invincibility. My diagnosis humbled me.

On that November day I learned the fragility of a human life. Even the strongest of us are vulnerable to abrupt changes in our health, and having access the right information is absolutely critical. Often we must rely on the expertise of others to make the best decisions.

It feels like you’ve lost all control, but you haven’t. And that perceived vulnerability exposes things you've taken for granted, aspects of your life you can control but often don't. For me it was who I kept as friends, how I respond to change, the way I treated others (especially my parents), and the way I treat myself.

  • Never miss an opportunity to reinvent yourself for the better.

I look much better with no hair (and now very short hair) than I ever could have expected. You will too. And my collection of colorful headscarves has not gone to waste.

You’d be amazed what you can learn about yourself in moments of adversity. My body kept me healthy, so I made decisions about how I would treat it in return. After careful deliberation, I decided I didn’t need meat as much as I thought I did.

I’ve done my best to stick to a primarily plant-based diet, and have never felt better. I couldn’t drink caffeine and soon realized that I felt more refreshed after a slowly-sipped a cup (or 3) of tea. I opened myself up to new routines, ones that allowed for reflection and appreciation.

And finally, I found that while I can’t knit to save my life (pardon the inappropriate play on words), I can write. In fact, I thoroughly enjoy it. This leads me to my last point.

On the Obama campaign we were urged to "tell our story," summing up who we are, what we stand for, and what brought us where we are today. To be honest, I always struggled with the concept.

Over the past two years - through sickness, pain, frustration, and survival - I’ve finally found my story. And I’m thankful I can share it with others as they face their own seemingly insurmountable challenges.

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