Bernadette Giandomenico
Finding the courage to move on
Does everyone wonder about how they would react if they received the news that they had cancer? I always had, until, when I was 28, I found out. It has changed my life in innumerable ways. Everything that was truly important in my life became crystal clear in that split second after I heard those words.
I have now been in remission for 20 months from acute promyelocytic leukemia (known as APML or APL). My life changed that morning in April 2004 when I came in to work at Dana-Farber. I was feeling generally unwell. I was exhausted and constantly out of breath. I went to Occupational Health and, because of the sharp eye of Nurse Practitioner Lisa Foster, was told that I should go over to the Brigham and Women's emergency room. I walked in to the Brigham that dreary day in April and did not walk out of there again for a month.
The first few days in there were among the worst. The doctors, though compassionate, could not really answer our questions, as they simply did not know what was wrong with me. They seemed to be testing me for everything, and the uncertainty was terrifying. I vividly recall hearing that a hematologist was coming over from Dana-Farber to talk with me. There was a sinking sensation in the pit of my stomach as Dr. Aram Hezel explained the bone marrow biopsy procedure. When I heard the word "biopsy," all I could think of was cancer, and the idea of going through a bone marrow biopsy filled me with dread. But, as I was to find out, we are all far more resilient than we think we are.
Don't get me wrong, a bone marrow biopsy is never fun, but I don't suppose any biopsy procedure ever is. I recall squeezing my husband's hand as they inserted that first needle into my bone. I got through it and, as it turned out, it was the right thing to do. The leukemic cells were not in my blood, but they were in my bone marrow. They would have to begin chemotherapy straightaway.
Unfortunately, a wrench was thrown into that plan when I developed a serious throat infection. The leukemia meant that my red and white blood cells were being produced, but were not doing their jobs. This explained my shortness of breath and the constant infections I had been experiencing. I had no immune system left. The throat infection was just the first in a long line of infections that I had that month. But after a couple of days on antibiotics and steroids, it cleared up and they began to give me my chemotherapy infusions. I was to be pumped with it every day, non-stop for a week. There were times that I could scarcely move my infusion pole because it was so full of medications.
The form of leukemia I was diagnosed with is quite rare. I was to be treated with a combination of chemotherapy, including ATRA (All-trans Retinoic Acid) and later, because I was part of a clinical trial, small doses of arsenic (You can imagine my reaction when they informed me of this.). ATRA syndrome exists as a result of ATRA fighting the leukemic cells in your body. There are many symptoms of this syndrome. I was to experience it a couple of days after I began to take ATRA. I had pain in all of my nerve endings and my legs blew up, as they were full of fluid. I was unable to walk. I was in such pain that we decided that I should be placed on a self-administering morphine drip. The idea of taking morphine scared me. What if I was to become dependent on it? But as the weeks passed, it turned out that I could take the painkiller as I needed it, and it really helped me in getting through that incredibly difficult time.
My hair began to fall out, so I shaved it off, and we moved on from that. I had a series of terrible night fevers and the nurses, my sister and my husband would take turns rubbing my brow with a cool cloth. We moved on from that. I had fluid around my heart that the doctors had to treat. We moved on from that. I had a digestive tract infection that meant that I could not really eat solid food. We moved on from that, too.
Then one morning a strange thing happened; I started to feel better. The swelling in my legs dissipated, as did the pain. As a result of not being able to move around for that time, though, my leg muscles had atrophied. I could not walk. When the doctors told me that my white blood count was beginning to rise, and I would be able to go home as soon as it rose to a magical number, the physiotherapist had to give me an ultimatum. I would not be able to go home until I could walk again and climb a flight of stairs.
If you had told me a month previously that I would be lying on the flat of my back staring at the ceiling and struggling to hold the tears back because someone had just told me that I would have to climb a flight of stairs, I simply would not have believed you. But that was the reality of it, and I moved on from that, too. I went through slow, painful physiotherapy and showed her that I could climb that flight of stairs. I soon went home.
How can I put in to words how marvelous the outside of the hospital seemed to me? How beautiful everybody's face looked to me? How glorious the new flowers were on that perfect May morning? How can I ever describe that feeling of coming home to my friends and family? There were times I thought that I would never see the inside of our apartment again.
I recently finished my yearlong clinical trial. It was a long, hard road, but I don't take anything for granted anymore. There are still times I think, "Wow! I'm walking. Isn't this great?" Believe me when I say that I never thought I would get a kick out of walking.
I have no idea of what life has in store for me, and my experience with cancer has taught me that I never will. Still though, I am hopeful that I can live a long and full life. Hope is the greatest asset that I have, and it exists only because of all of those doctors, nurses and researchers out there who have made the battle against cancer their lives' work. I would like to thank all of them, along with my doctor, Dan DeAngelo, of Dana-Farber. He has often helped me to smile and to be brave when I never thought that I would do either again.
Bernadette Giandomenico works in Volunteer Services at Dana-Farber. This spring, she and her husband will celebrate her second year of remission by taking part in the Leukemia and Lymphoma Society's "Hike For Discovery" to the Grand Canyon.
