Quotes from Suleika Jaouad

If you have a chronic illness in America, there's a good chance you also hold a degree in Health Insurance 101, whether you want to or not.

So, you know, when I think of survival as a creative act, it's not trying to plaster over the isolation or to, you know, rewrite your predicament into something positive with a happy ending or some kind of neat resolution. It's writing into the unknown.

I've been fortunate to be treated by excellent doctors at world-class hospitals. In the last year alone, my insurance has covered over a million dollars in medical expenses, including a bone marrow transplant and 10 hospitalizations amounting to a combined five months of inpatient care.

Every time I see a doctor, get a CT scan, receive chemotherapy or pick up a prescription, insurance covers only part of the transaction - and there's always a bill on top of it.

The bone marrow transplant procedure itself can be dangerous, but it is swift, which makes it feel strangely anti-climactic.

The thought of going through a bone marrow transplant, which in my case called for a life-threatening dose of chemotherapy followed by a total replacement of my body's bone marrow, was scary enough. But then I learned that finding a donor can be the scariest part of all.

Soon enough I would learn the specific diagnosis: myelodysplastic syndrome, a disorder of the bone marrow. In my case, the disease growing inside me had morphed into acute myeloid leukemia. I would need intensive chemotherapy and a bone marrow transplant to save my life.

Today, my brother and I share almost identical DNA, the result of a successful bone marrow transplant I had last April using his healthy stem cells. But Adam and I couldn't be more different.

Just a few years ago, at the age of 22, I learned I had an aggressive form of leukemia. I needed intensive chemotherapy and a bone marrow transplant to save my life. Back then, my doctors told me that I had a 35 percent chance of surviving my transplant.

I think another aspect of being a young adult with cancer is that most of your friends, hopefully, you know, have never had to experience life-threatening illnesses themselves.

A growing body of evidence suggests that cancer survivors continue to struggle with medical, financial, professional and psychosocial issues long after the end of their cancer treatment.

Having cancer changed the way I ate and thought about food. My symptoms dictated my eating habits. The sores in my mouth and the bouts of nausea, for instance, stole the pleasure of eating and made it an ordeal. At some points in my treatment, eating wasn't even an option.

At the age of 22, I began to consider my own mortality. It had never occurred to me that, with all of the progress that has been made in cancer research, none of the standard treatments would work for me.

During the first year of my cancer treatment, adopting a dog was out of the question. I spent more time in the hospital than out. And in the time I was able to spend at home, I had to live in a germ-free bubble to protect my fragile immune system.

Dozens of chemotherapy treatments and one bone marrow transplant later, I wish I could say that I've mastered the art of not working. But there are still days when I wake up feeling simultaneously restless and bored.

It felt like 10 years, but I was actually in treatment for three-and-a-half years. I finally finished in April. Two years ago, I had a bone marrow transplant from my brother, which saved my life, so I feel really grateful.

While an increasing number of cancer treatment centers have begun offering post-treatment care plans and support groups to help patients navigate these challenges, many patients continue to fall through the cracks.

The steep price tag of cancer treatment needs to continue to be a part of the national conversation, not just the patient-doctor one.

One of the hardest parts about developing leukemia at age 22 was how restrictive it was: My treatments left me highly susceptible to infection and with limited mobility.

In the world of medicine, a trial refers to clinical research that follows a predefined plan or protocol. A clinical trial must comply with strict health, safety and ethical regulations determined by the Food and Drug Administration.

Youth and health are supposed to go hand in hand. And it was only when I got to a point where I was so weak, it was a struggle to walk up and down the stairs that I found myself in an emergency room. And within 24 hours I was on a plane back home to upstate New York, and I got the bone marrow biopsy that led to my actual diagnosis.

For many of us, the holiday season triggers memories of food and family. That's certainly the case for me.

Traveling gave me the opportunity to reinvent myself. You can imagine my excitement when, one year after my bone marrow transplant and two years after my cancer diagnosis, my doctors gave me permission to take my first big trip since cancer. Freedom, finally!

Like a lot of other cancer patients lying in hospital beds or in chemotherapy suites, I have spent a fair amount of time fantasizing about jetting off to a tropical island.