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My name is Mary Macaluso. I grew up in Dallas, Texas.
In November 2004, I was diagnosed with Severe Aplastic Anemia. It all began when I was studying abroad in England in the fall
semester of 2004. I began to experience various symptoms such as bruising, fatigue, fainting, seeing spots, ringing in ears,
and paleness.
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| Accident in Spain |
After weeks of experiencing these symptoms,
I had a very serious fainting spell while I was in Spain where I went into convulsions and slammed my chin on a hard marble
floor. At this point, I was frightened and I had no idea what was wrong with me. Things progressively got much worse from
here. I just didn't feel right. I was completly exhausted. I went to several doctors and hospitals in the small
town in England where I was in school, but many would not treat me. I kept asking them to take my blood and they wouldn't.
They just sent me back to my dorm and told me I was fatigued and would be fine. By the time I finally got blood
taken, my blood levels were so low that I was rushed to the hospital in an ambulence for immediate transfusions and never
returned to my school.
| The week before I went into the hospital |
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I was checked into the hospital in England for five
days. I was given 8 transfusions and then was sent back home to Dallas without being diagnosed. In England a diagnosis could
take several weeks where as in America it only takes a few days. When I returned home, I immediatly went to an oncologist/hematologist,
Dr. Karel Dicke in Arlington, Texas. After a few days Dr. Dicke gave me my diagnosis and my treatment options. He explained
to me that my body had been exposed to something toxic and that it reacted by creating an abnormal lymphocite. This lymphocite
then began to multiply and attack my stem cells disabling my body from producing blood. My bone marrow had a cellularity of
less than 25 % at the time. He then explained the two approved treatment options to me, ATG and a
Bone Marrow Transplant, which would have had to be a MUD (matched unrelated donor) transplant because I did not have
a matched donor. My doctor also knew of another treatment, a clinical trial at Johns Hopkins Hospital in Baltimore. This treatment
was High-Dose Cyclophosphamide. This option seemed to have a brighter lining than the others. There was less of a chance of death
and relapse than with the other two treatments. The only thing that worried me was that it was experimental. As soon as I
visited Johns Hopkins Hospital that worry was gone. I was comforted by the controlled environment, incredible caring staff,
brilliant doctors, and strong treatment plan. It was a hard decision but High-Dose Cyclophosphamide had the least risk. For
me the most positive aspect was that there was virtually no chance of relapse, which is extremly common in other treatments
such as ATG. This gave me hope that it could cure me.
I started High-Dose Cyclophosphamide with
Dr. Robert Brodsky the next week. This treatment included a 5 day course of High-Dose Cytoxan Chemotherapy. Cycolphosphamide
is the generic name for Cytoxan. I started chemotherapy on December 16, 2004. I was checked into the hospital for my course
of chemo. I was released when I finished the chemo and was put into out-patient care while I was given transfusions.
10 days after the chemo was administered, I was infused with GCSF a growth factor similar to neupogen. This growth factor
was meant to stimulate the white blood cells. White blood cells are not transfused, so once you see growth in that portion
of your blood results, you know that you are producing blood again and the treatment is beginning to work.
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This treatment is very similar to a Bone Marrow Transplant.
It uses the same kind of chemotherapy, but instead of infusing bone marrow, they replace it with a simple growth factor.
The theory is that this allows your body to restart on its own. It is like a jump start to your system.
I had a relatively good experience
with the chemotherapy. I had very little nausea or pain from it. I wouldn't say I completly lost my appetite. I wasn't very
hungry and nothing really sounded good, but I was able to eat. It was easiest to just eat small meals throughout the day.
As you can see, I lost my hair. Actually, I shaved it once it seemed I was going to lose all of it. It was hard, but grounding. I
enjoyed being bald, but the growing back process was the roughest part. I didnt wear wigs, just hats and bandanas. Now
that it is grown back, I am glad I did it. I love my short hair and I probably would have never cut it.
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| After I lost my hair |
To be honest, I am painting a pretty picture on
the experience. To be completly accurate the treatment was hard, there was a lot of physical pain. Lots of bone marrow biopsies,
needles, ports, everything that would involved in a bone marrow transplant. I found it easiest to psyche myself out of
this type of pain. I would close my eyes and just try to remain calm. It worked best for me. My doctor also
told me to be prepared to get sick. After having the chemo it lowers your ability to fight infection. I became very ill and
I was checked into ICU for two weeks. This was the hardest thing that I endured while being sick. I was on 100% oxygen,
unable to eat or even get out of bed. This was a very stressful time for my family, friends, and me. Luckily I turned
the corner on my 20th birthday. My father had planned me a surprise, he had arranged for me to get a bigger hospital
room and got a whole bunch of balloons and sandwiches and cake for the entire floor. It was very sweet, but the
most important thing was that I actually ate something and kept it down. Everything just got better from there. I got stronger,
started walking around the hospital, finally got off the oxygen and got released once again into out patient care. It
was amazing how fast it happened after that. The next week we started to see white blood cells. It was so exciting, they told
me to be prepared for disappointment because your counts fluctuate, but my counts soared. Within two weeks my white blood
cells got up to 1000(which is about 1/3 of what is normal) and I was able to go home back to Dallas and resume my follow
up treatment with my oncologist in Arlington. I checked out of Johns Hopkins on Febuary 7, 2005. It was only a month
after that until I was transfusion independent. I got my last transfusion in the middle of March, the day before my mema's
funeral. My counts slowly inched up in the months after until they returned to normal. My doctors were amazed at how quickly
I recovered. They said that that had a lot to with the fact that I was young and still healthy before I became sick. They
also commented on my inner strength which I do feel that I have developed. I was declared in remission in July 2005 at my
last visit to Johns Hopkins with Dr. Brodsky.
It had all gone by in a flash. For a while, it felt
like a dream. I am healthier now than I was before. All of my blood counts have reached beyond normal. I am 100% back
to my old self again. It feels good to be alive. I have a much sunnier disposition on life. I don't let things get to
me. I always tell myself it could be so much worse. All in all, I am grateful for my disease and most of all, my treatment.
Dr. Brodsky said that he didn't expect that I will ever have this problem again and in his medical opinion I was cured. This
treatment truly saved my life.
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