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Submissions to "Patients' Stories" cannot be verified for their accuracy. They do not necessarily represent validated medical research. The reader should understand that these stories represent only the opinions of the authors and not the Hairy Cell Leukemia Research Foundation. My
Story I am a
43-year-old white male, married with a 5.5-month-old son. I have always been in
excellent health with a few recurrences of tonsillitis and strep throat over my
young adult years – usually prescribed amoxicillin and that did the trick.
Otherwise, I have been athletic “on and off” through the years, basically
going through stretches of exercising regularly and other stretches when time
didn’t seem to permit it. Since I was 27 years old, I have gone to the doctor
every year for a routine physical. In 2003, my blood
counts were lower than normal and my doctor believed that I was slightly anemic
possibly caused by a B-12 deficiency so I started taking supplements. In the
fall of 2004, my doctor said that my blood counts had dropped some more and my
routine blood work looked fine (no deficiencies). He sent me to a Hematologist
to look into the anemia. At this point, my only complaint was that I felt
unnaturally fatigued and I had chalked it up to being overworked, not exercising
regularly and getting a bit older. I had recently been married, my wife was
pregnant, we had moved, and I just opened a new business – so naturally I
figured that I was tired for a reason. In addition, I had some bruises that
seemed to appear from nowhere and they were deep, dark and purple. Still,
all-in-all I felt pretty good with no pain and a healthy appetite. Surprise,
Surprise… Upon further examination, my Hematologist told me that there was
“something” going on in my blood work and that further testing was required
to determine the diagnosis. It was now January 2004 and my wife and I were
expecting our first baby in February. I decided to wait to have the tests done
until after my baby was born, because I did not want the joy of my first child
being born taken away from me. In fact, I kept the information from everyone,
including my wife. My son was born
on Treatment
I entered Mass
General on March 31st for the 7-day Cladribine treatment and I was
told that it would be fairly uneventful and that I would feel my worst about
9-15 days after my treatments ended. However, by my second day of treatment my
temperature started spiking each night and my blood counts were dropping. On the
5th day of treatment, my temperature spiked to 105 and my white blood
counts were 0.0! I was moved to a private room that was neutropenic-friendly
(sterile) and administered 3 different types of antibiotics intraveneously. I
was repeatedly checked for infections, but the tests always came back negative,
thank god. My temperature still spiked each night, but each night it was lower
than the night before. I had to spend an additional 7 days in the hospital,
while I was waiting until I didn’t have a spike higher than 100.4 and I
didn’t need Tylenol to reduce my fever. The entry “SMOOTH SAILING” on this
website does a great job of describing my two-week stay in the hospital, with
the “tree” rolling around, showers with gloves to protect the IV, nurses
missing my veins while changing my IVs, repeated visits from Infectious
diseases, Oncologists, etc. I had great nurses and my care was very good – but
hospital stays really stink! I finally went home on April 13th and I
was happy to see my baby again!! Recovery
at Home I was to take
Levaquin (antibiotic) for four days, but I didn’t have to take anything else.
I continued to use nytstatin (anti-fungal) and mouthwash for a week and a half.
And I was pretty obsessive about limiting my exposure to bacteria and visitors
for the first two weeks. I had a complete loss of appetite and dry mouth – I
would drink Boost and/or Ensure a few times a day and I started eating plain
rice after the second week. In general, I felt as though I was sea-sick and
carrying a grand piano on my back. I watched a lot of the Food Network Channel
and fantasized about the food being prepared and cooked. (I learned a lot and I
became a much better cook, but that is another story). I returned to my doctor
every week and received a shot of Procrit to help accelerate my Red blood count
recovery. I have to admit that I felt pretty losy most of the time for the first
two months after treatment. It seemed like every time I had a few days, where I
felt better, I would then feel lousy again for another several days. This 2
steps forward and 3 steps back rollercoaster, at times made me feel “down”.
I would rebound mentally by the next day, but my visits to the doctor were a bit
gloomy. My Hematologist would give me the straight facts and remind me that
there was always the possibility that the treatment might not work (10%-15%, he
would say) – he felt that I was slower recovering than he had experienced in
the past and this concerned him. I began to rely on those around me who were
praying and my own positive outlook to stay upbeat during what seemed like
routine setbacks over the first 8-12 weeks of recovery. I lost over 30lbs, but I
don’t recommend the diet program, ha ha! So
Far So Good In July, 12 weeks
after I entered the hospital, I finally started feeling much more like my old
self. My blood counts all returned to normal, although my white blood count is
still on the borderline and seems to fluctuate a bit 3.3-3.7 (4.1-10.9 normal).
An immunological test of my blood show no signs of HCL and my appetite is
fantastic and my energy level is better and better every week! As of this
writing, Good
Luck and Keep the Faith For those of you reading this website like I did when I was first diagnosed, I would say this is certainly a challenging experience. I can offer words of encouragement and I’ll answer questions if you have any. For those of you on the other side of this disease with me, let’s hope we all stay in complete remission and enjoy a healthy and happy life! Warmest regards, errol@rcn.com |