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Life, Interrupted: Fighting Cancer, and Myself

22 Jun

By SULEIKA JAOUAD

Photo Credit: Shayla Harris/The New York Times

There is a dreadful routine to chemotherapy. My life has been synched to a chemotherapy calendar ever since my leukemia diagnosis last year. I have become an expert at predicting when side effects and symptoms will set in. It’s a ghoulish monthly party, and the guests always arrive on time: nausea, vomiting, chills, exhaustion, fever, mouth sores, pain, infections and emergency hospitalizations.

Despite the clockwork of these cycles (start chemo, wait for symptoms, get sick, go to the hospital), at the start of every new round I convince myself that the outcome will be different. This time, I am going to be stronger than my treatment. This time, my mind will outwit my body. This time.

But over the past year, after 28 rounds of treatment, not once have I “won” this secret battle with myself.

The cancer world is awash in battle language. Our culture repeats these warlike phrases over and over, like mantras. Cancer books love to traffic in this take-no-prisoners language. They talk about cancer “warriors,” fighting and winning a battle for health. They even encourage patients to visualize chemotherapy as a sea of soldiers entering the bloodstream to fight off the enemy disease. In a lot of ways, it’s an attractive line of thinking. It’s the hero’s journey mixed with the glorification of war. It’s the us-versus-them theme — except in this case it’s us-versus-us. Cancer is one’s own civil war.

Continue reading, here.

Follow @suleikajaouad on Twitter and on her Facebook Page.


Update: Bone Marrow Transplant Next Month

6 Mar

By SULEIKA JAOUAD 

For almost a year now, I have been waiting to undergo a bone marrow transplant. It’s been right around the corner for nine months. Every month I do a round of chemotherapy, and each time I am told to wait. At my last appointment, my doctors caught me off guard by setting a tentative date for transplant: April 2. I feel extremely lucky to have a donor and to have access to some of the best medical care in the world, but my sense of waiting — a terrible anticipation — has become more acute as the date approaches.

The results of my latest bone marrow biopsy still show evidence of the disease. Although there have been some positive developments since I began treatment late last spring (the number of cancerous blasts in my bone marrow has decreased from 30 to 3 percent), I worry that I will not be in total remission by the start date of my transplant. I am hoping that my current round of chemotherapy (Vorinostat and Vidaza — the Vicious V’s, as I call them — the drug combination that constitutes the clinical trial I have been doing since August) will get rid of these remaining blasts as well as multiple chromosomal abnormalities and deletions in my bone marrow. It’s those abnormalities that the transplant aims to eradicate with fresh donor cells.

Instead of focusing on the curative possibilities of the transplant, I find myself thinking about all that might go wrong. This is my only chance for a cure, but my transplant doctor’s words won’t stop ringing in my ears: “for someone with your medical profile, the transplant has a 40-50 percent chance of success.” Actually, “percentages” are not that predictive, given all the factors involved: my form of myelodysplastic syndrome (MDS), my reaction to the donor cells, complications that can occur during a transplant, and on and on. But I’m finding it difficult to feel optimistic about a live-saving procedure when the odds seem stacked against me — or at the very least, even.

My world of waiting is split between willful distraction and a morbid kind of myopia. I fluctuate between two extremes: wanting to pack in as many adventures and diversions into the next four weeks, and losing myself in thoughts and fears about the future.

How do you “suck the marrow out of life” when you’re counting down the days to a bone marrow transplant?

It’s difficult to imagine that in only one month, I’ll be on all the necessary medications for my transplant — the intensive chemotherapy and radiation, the antibiotics and anti-nausea pills, the immunosuppressants, and the rest. I’m confident in my doctors’ abilities, but I don’t have any prescriptions for the waiting. Just the journals I’m filling up, stacked next to my bed, and my greyhound dog calendar, a gift from a friend. Soon I’ll flip it over to April.

You can find more information on the bone marrow transplant process here.

Follow @suleikajaouad on Twitter and on her Facebook Page.

The ABCs of My Disease

7 Jan

By SULEIKA JAOUAD 

Accepting my diagnosis was difficult enough, but understanding the medical jargon that accompanied it felt as though I was learning a foreign language. A really hard one.

Although my initial bone marrow biopsy results in May 2011 revealed that I had Acute Myeloid Leukemia (AML), following further discussion and deliberation, my doctors determined that I actually have Myelodysplastic Syndrome (MDS), a disorder of the blood and bone marrow.

At first, this didn’t make sense to me: how could the tests results say I have one disease, and the doctors another?

I learned that, in my case, the difference between AML and MDS is a question of semantics. MDS, formerly known as ‘preleukemia,’ is characterized under the ‘French-American-British’ (FAB) classification system as less than 30% myeloblasts (leukemic cells) in the bone marrow. Patients with a blast count higher than 30% are considered to have AML. Under the second system of classification devised by the World Health Organization (WHO), MDS is defined by less than 20% myeloblasts.

My biopsy results showed that I had 20% blasts in my marrow, meaning that by one count, I had Acute Myeloid Leukemia, and by the other, I had a late-stage form of Myelodysplastic Syndrome.

Confusing, right?!

What was clear from the get go, however, is that my disease was high-risk and very advanced when it was discovered. By the time I was diagnosed I was already very ill. I was bedridden, suffered from painful mouth sores that made talking and eating very difficult, and had frequent infections due to my compromised immune system. My white blood cells (the infection fighting cells) and red blood cells (which deliver oxygen to your blood) were very low. The biopsy results also showed many chromosomal abnormalities in my marrow, with both an atypical number of chromosomes and structural abnormalities.

This all meant that I needed intensive chemotherapy right away and a bone marrow transplant (now called a stem cell transplant) as soon as my blast count could be reduced to under 5% and as many of the chromosomal abnormalities as possible could be erased. The only cure for my disease is a transplant. Although the chances of a successful transplant for someone in my situation are not as high as I wish they were (30-40%), I can only hope that I will land on the right side of the statistics.

In June 2011, I received one round of induction chemotherapy using a ‘7+3’ regimen (7 days of Cytarabine and 3 days of Daunorubicin). I spent almost 6 weeks in the hospital in ‘isolation’ and was finally released on July 7, 2011, 2 days after my 23rd birthday. My blood counts never quite recovered from this kamikaze blast to my system, and following this treatment, I was even sicker than before. A bone marrow biopsy showed that the treatment had had virtually no effect on the disease. I was completely bald, 20 pounds lighter, and dealing with increasingly painful sores in my mouth and throat. It was (literally) difficult to swallow the notion that these weeks of suffering had been for nothing.

One month later, I began a low-dose chemotherapy clinical trial, comprised of a combination of Azacitidine and Vorinostat. This treatment was supposed to improve my quality of life and allow me to live at home, while also aiming to get me into remission. As it turned out, this treatment proved, in some ways, more difficult than the first. I’ve now completed four rounds of the clinical trial over the past 5 months. I’ve had many side effects from the treatment (nausea, vomiting, chronic fatigue, neutropenic fevers, and mucositis). The most unexpected aspect of this experience, is how much time I’ve spent in hospital and unable to get out of bed. Since beginning this treatment, I have been hospitalized 6 times and have spent over 2 months of the past 6 months in the hospital for various infections and complications. On a more positive note: biopsy results in October showed that the treatment seemed to be working and that my blast count had been reduced from 20% to 4% and that there had been an overall decrease in the number of chromosomal abnormalities.

Today, I find myself at a crossroads. Last week, I received some startling news: my latest bone marrow biopsy showed that my blast count has gone up and that the number of chromosomal abnormalities hasn’t changed since October. This could mean that my disease is getting more aggressive and is no longer responding to treatment, in which case I would need to proceed to transplant immediately. My doctors have issued a second test and on Wednesday, I will have a better understanding of the situation.

If I’ve learned anything since falling ill, it’s that the road to recovery is rarely straight and without potholes. Although I never feel prepared for bad news from my doctors, I know to roll with the punches and to take things as they come, one minute–one day at a time.

Follow @suleikajaouad on Twitter and on her Facebook Page.

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