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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.
I am a 45 yr old elementary guidance counselor in
the Elk Valley in southeastern British Columbia. I am married with a nine year
old son. My story with HCL begins recently when I got the flu in mid November
of 2003. I went to the local hospital after finding was not improving. I was
told that I "had a virus and would have to let it run its course" so
spent the next week mostly in bed and it wasn't getting better. I had some
night sweats and was not sleeping well and had work to catch up on so went
back to work only to be told that I should get myself checked out. This was in
the other town I worked in and the doctor there diagnosed me as having
pneumonia in both lungs and within a half hour I was on a 130 mile trip to the
next largest city by ambulance....
When I got there, I was met
by a number of doctors who began to do tests and told me I would have a
bronchoscopy. That was the last thing I remembered for over 3 weeks.
Apparently, I was kept in a semi
induced coma while doctors and nurses attempted to drain my lungs, but I wasn't
getting better. I had a bad reaction to some of the medication given and my
whole body swelled up and turned red. I was kept still so I couldn't remove
any tubes. My family members came up to see me but I couldn't respond. It was
a very trying time for them and many folks from churches began to pray for me.
Prayers went out from all over the world, from China to Oklahoma to Nunavut.
With my condition not improving, a
decision was made to send me to Calgary via STARS helicopter ambulance. I was
first sent to Foothills Hospital where a biopsy was performed to find out what
was stopping my healing.
I have a faint recollection of
waking up in Calgary and being asked about the biopsy. I was in and out of
consciousness for the next few days and was transferred to the Lougheed
Hospital. However, I can vividly recall December 20th when was wheeled
into a room and saw my Mom and a doctor. She told me why I wasn't healing....I
had been diagnosed with Hairy Cell Leukemia! When I heard the "L"
word, I could not believe it! At this point the doctor, an oncologist,
informed me that this type of leukemia had a very high (over 90%) cure rate if
treated with chemotherapy as soon as possible. My first words were "When
can we start?"
I spent the next two weeks in
intensive care, loathing almost every moment because I was tethered to a
bed with all sorts of tubes and wires and lost all of my freedom and
independence. Having visitors was the only relief, and I was so thankful that
so many of them came along. The 7 daily administrations of cladribine (2-CDA)
made me nauseous and I often threw up as well. I had been bedridden for such
along time that the transfer of me to stand up or sit in a chair was a big
physical ordeal for me. I had some awful dreams and the heavy doses of
medication caused delusions. I was restrained after pulling out some tubes
subconsciously.
However, I could sense that the tide
was turning and that the prayers were effective. I got better at controlling
my respiration, and wanted to know long I would have to spend in Intensive
Care. I desperately wanted to go home. My wife came up and stayed with some
friends and was a great support. My son spent the holidays with my Dad's
family and bonded well. I never got to celebrate Christmas, and had my last
chemotherapy at 10 pm on New Years Eve. So much for ringing in the New Year.
On Jan 1, I was lucky enough to leave
the ICU alive and was transferred five floors up to Unit 51, a primary care
ward for oncology patients. It felt great to leave ICU behind, but new
challenges awaited me. I had been on intravenous for over five weeks and lost
around 35 lbs of body weight. I was given a swallowing assessment by a speech
therapist and was allowed to orally eat pureed food and thickened liquids. I
never thought that pureed squash would taste great, but it sure did! Getting
rid of the intravenous was a step towards independence, then I was weaned
off oxygen, catheter plumbing, chest and trachea tubes, and encouraged to
become more mobile. I used a wheelchair for a few days and was able to phone
some friends and began to feel more independent.
I still had trouble sleeping
and my rear was quite sore but I knew I was on the mend. I was able
to have stingy heparin shots stopped if i got more mobile, which I did. I
began to take physical therapy and used a walker and was able to shower by
myself. Eventually, the doctor decided I could go home a bit earlier than
planned and my Dad assisted me in getting back home to B.C. on January 13.
There is no place like home, it
felt so good and I had lots of catching up to do after being hospitalized
for 7 weeks. The healing has been slow and I am accepting new physical
limitations such as a pinched sciatic nerve and withered right arm, but local
physical therapy and acupuncture is helping. Contact with friends and colleagues
has been rewarding. I've even been invited to a local group of cancer
survivors!
I know my life has changed, and
I've had quite the experiences. I do not get angry nor question why this
happened to me in particular, but simply accept each day as a gift and work on
what healing I have. To quote Lou Gehrig, "I consider myself
to be the luckiest man in the world"
Brent G. Kirchner
hobbit8@shaw.ca
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