Annette: Surviving Leukemia
I'm Annette and I'm 31 years old. I live in Tampa, Florida, with my
husband, Abraham, and my two-and-a-half year old son, Alexander. In August
1994, I began my master's program at the University of South Florida, and
noticed that I easily became tired and out of breath. It was Labor Day
weekend when my husband and I went to visit my family. And I was strongly
encouraged to go to the Emergency Room. For about a week I had small
bruises on my chest, later I would find out they were called petechiae. My
husband asked me to show my bruises to my mother, grandmother and sisters.
At first I was hesitant to go but then at the insistence of my family, I
ended up in the ER having a blood test. The staff there on a late Sunday
afternoon told me not to worry and just go home and they would call me
with the results. After being at my parents' house for about 20 minutes
and we were about to sit down and eat my mom's lasagna, we got a call from
the ER. When I got on the phone they said they couldn't tell me my results
over the phone but I needed to pack my suitcase and plan on staying at the
hospital. At that second, after hearing those words, I felt like someone
had just stabbed me in the back with a knife. I was completely in shock.
We rushed back to the hospital and arrived at the Emergency Room full of
patients waiting to see doctors. When I told the Admission person my name,
she said, "Oh, yes, Ms. Knowles, we've been waiting for you. Come on back.
A doctor needs to speak to you." For the life of me I don't remember his
name - maybe it was such a traumatic time that I blocked out the minor
details, but what I do remember was what he said. He said, "Ms. Knowles,
I'm sorry to have to tell you this, but we think you have leukemia. Your
platelet count is 30,000, and it should be at least 140,000. Your white
cell count is 20,000, and it should be around 6,000 and your hemoglobin is
5. It should be at least 12. We don't know how you've been able to walk
around."
The mental and physical struggle
I remember the months that led up to this moment. I kept trying to lose
weight and just felt so exhausted. I wanted to exercise, but every time I
did, I just got so out of breath. I kept getting sores in my mouth, and
I'd just been fitted by my dentist with a mouthpiece to keep me from
biting the inside of my mouth, and I just kept getting colds. It was a few
months later that I was able to figure out how I got the tiny bruises on
my chest. My husband and I had adopted a pregnant cat in our neighborhood,
who had five kittens in our apartment. I got especially attached to one of
them, whom I named Sebastian. I know now that he was my angel. He would
crawl up on my chest and knead me until he fell asleep. When the doctor
told me I had leukemia, I decided to wait to have the bone marrow biopsy
test and asked him to refer me to the nearest cancer institute, Moffatt
Cancer Center. The irony of that is that I had hoped to do my social work
internship at Moffatt, and here I was being referred to them as a possible
leukemia patient. The doctor at the ER wanted me to go by ambulance to the
Center, but my father said he'd drive me in his Blazer to Tampa. My whole
family followed in a caravan of cars. When we arrived at the center, they
allowed my husband, mother and sisters to stay in the room with me. I had
my first bone marrow biopsy and aspiration on Tuesday, Sept. 6, and found
out that day I had acute myelogenous leukemia. I then had to make the
decision: did I want conventional therapy, or to be a part of a clinical
trial with very aggressive chemotherapy. I told them I wanted the clinical
trial. I began my first round of chemotherapy on Sept. 10. I was in the
hospital for about 5 weeks. I experienced about every side effect of
treatment. I was extremely nauseated, I had constant diarrhea, I called it
toxic sludge, and vomiting. I experienced nadir, where all my blood counts
bottomed out for one and a half to two weeks, and I ran real high fevers
at a hundred and five degrees. The chills were so vicious I would almost
go into convulsion. I remember the only thing about the high fevers that
was good was how good the warming effect of the Demerol felt. I lost my
hair and it was so frightening for me to see myself in the mirror as I got
up in the middle of the night. I thought I looked like an old hag.
However, knowing that my long blonde hair meant so much to me, my mother
had a wig made to look just like my own hair. A hair stylist even came to
my hospital room to style it. She was a cancer survivor, too. I remember
feeling so unattractive, but always trying to stay optimistic and keep a
smile on my face. I think that half the battle for me was just believing I
would make it through, even the darkest hours. Don't get me wrong. I did
experience the roller coaster ride of emotions. I would especially bottom
out into depression when my fever skyrocketed. Those were the moments I
thought would be my last.
Remembering before and after
Before this time in my life, I had always done everything right. I was
what some people would call a "goody-goody". I'm the oldest of three girls
and a perfectionistic child. I grew up in a very religious, Christian
home, and was always the leader of my youth group and sang in my church
all the time. I had never expected anything like this to happen to me, and
at 25, nothing bad had ever really happened to me like this. I look back
now at all that happened to me, and I wonder where I found the strength. I
lived through a horrific nightmare and almost died several times. I went
through two other consolidation rounds of chemotherapy after my first
induction round put me into remission. My third round of chemo ended in
February of 1995, and it was my most difficult round. During my stay in
the hospital, my most favorite little kitten, Sebastian, died. I don't
remember much after my husband told me that he died. All I know is that I
got some injection to sedate me, and I lost a whole weekend of time. The
reason I really think Sebastian was my angel, since he saved me from
dying, was that when they did an autopsy on his body, they said he
shouldn't have lived more than a week after he was born, because he had
only a partial cerebellum. If it were not for him kneading me with his
little paws, I might not be here right now.
After my third round, I got shingles down my sciatic nerve on my left
side, and I couldn't walk for about three months. I had to be pushed
around in a wheel chair if I wanted to go anywhere. I felt so vulnerable
and completely dependent on everyone. I was always the one to give to
everyone and never ask for anything in return, but my candle was burning
out, and the most important lesson I had to learn was to accept assistance
from others. I had to learn to be humble and take back strength from the
kindness of my family. My husband was my lifeline. He stayed with me every
night in the hospital, and my mother was there every day. Not a second of
the day was I left alone, and I really appreciated that.
Before this whole experience of my life, my worst fear was pain. Not
only did I face it, I conquered it. I'm no longer afraid of pain, and I'm
definitely not afraid of dying. I believe that no one is guaranteed
tomorrow, and that we should treasure every second of every day that we
have with each other. Life is just too short. I value my friendships and
family more than anything materialistic. After my third round of
chemotherapy, I had to decide whether or not I wanted to have a bone
marrow transplant. My sister Patricia was a perfect six out of six match
for me. My husband and I did a lot of research and spoke to a lot of
doctors in all the major cancer centers in the United States. When I came
to the decision to not have a bone marrow transplant, one of the main
reasons was that I so desperately wanted to try to have children. I knew
that the chances were slim from all the chemotherapy and that I could
possibly be sterile. But deep down in my heart, I knew I was meant to be a
mom.
Amidst despair, the joy of Parenthood
Two years and eighteen bone marrow biopsies after my third round of
chemo, I was given a clean bill of health and was told that I could start
trying to get pregnant. I got pregnant the first time I tried, and now, my
son, Alexander Harrison Knowles, is two and a half years old. The past six
years have changed my life forever. I know that by going through this
experience, I'm a stronger person. But my story of survivorship doesn't
end there. Eight months after giving birth to my son Alexander, my husband
was diagnosed with a rare heart disease, and at the age of 28, he had to
have a defribillator implanted. His cardiologist told us that as long as
the defribillator continues to maintain his heart's pace, he wont need a
heart transplant, but to prepare ourselves for that possibility in the
future. The only good thing about his diagnosis was that we had already
weathered a life-threatening illness with my experience, so we were
prepared for the day to day struggles. We really count our blessings now.
We look at our beautiful son and thank God for sending him to our lives.
Alexander is my heart outside of my body. He brings sunshine into every
place he goes.
Hope and Gratitude
If you ask me what gives me strength to deal with these trials, I can
honestly say it was my faith, family, and friendships. My faith in God
helped me walk through the valley of the shadow of death. My family,
especially my husband and mom, helped me to stay strong and hopeful
through my most difficult hours, and my friends, who held a blood drive to
keep my blood transfusion and platelet bags full, who sent me hundreds of
well wishes and prayers, and who along with my family are the most special
people in the whole world, I thank with all my heart.
My philosophy now fits the phrase, "Live, laugh, love." My theme song
is Gloria Gaynor's "I Will Survive". At first I was afraid. I was
petrified. What truth. Now I work as a patient services manager for the
Leukemia and Lymphoma Society. I did go back and finish my master's degree
in social work, and I am proud to share my story with others to instill
hope. If one person hears my story and says, I can do that too, it is so
worth it. Don't give up. Keep the hope that you have.
Thanks for listening to my story. |
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