The ABCs of My Disease

7 Jan


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.


One Response to “The ABCs of My Disease”

  1. Emily January 8, 2012 at 3:36 pm #

    I’m so sorry that you’ve been going through this, Susu. I think of you often, and know that your strength of character will serve you well on the road ahead. Do you know when you’ll be in the City again? I’d love to come for a visit.

    Fingers crossed for good news!!

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