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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.

    It was a dark and stormy night! Well, that's how Snoopy, on the Peanut comics, always started out his stories. But truthfully, it wasn't stormy.  It was dark.  I'm a firefighter in a small town in Florida.  I was working a 24 hour shift, when we got a call around 04:30 A.M.  A neighboring town needed some assistance with a building fire.  We arrive at the fire, put our gear on, and go to work.  I'm in full gear with an air pack on, working a hose line for about 30 minutes.  We finish our work and go to a rehabilitation area.  Problem is........I can't make it there.  I take about 20 steps and just flop out in the grass.  I'm one whipped puppy!  Now I had been feeling a bit more tired of late, maybe a couple of weeks.  Thought I just needed some more rest / sleep.  But this was ridiculous!  I literally could not stand up.  The other guys I work with, helped / drug me over to the ambulance.  Everyone thought I was dehydrated.  They prop me up on the ambulance bumper and next thing I know, I'm being placed on a stretcher.  I've passed out!  Well that'll get you a trip to the emergency room.  Those doctors say I'm anemic, go home and rest and see your doctor.
    I finally get to see my doctor a couple of weeks later (January 2005).  In the mean time, I'm moving in slow motion.  I am constantly tired, exhausted, drained and whatever other adjective you'd like to use.  I'm getting 8 to 10 hrs. of sleep a day, waking up wondering when I can go back to sleep.  My doctor does some blood work and performs an interview and examination. He believes I may have a sleeping disorder.  I explain to him that I can sleep with the best of them.  I may even be a world champion!  I ask him what that has to do with being anemic?  I gave him my blood lab report from the emergency room.  I need his referral to see a hematologist.  My blood is out of whack!  "We'll worry with that after I look at your lab work," he replies.  They call me a few days later.  I've got an appointment with a sleep specialist and with a hematologist.
    My appointment with the hematologist is seven weeks away.  Oh, dear. The way I had been feeling, I figured that was long enough to plan my funeral.  I struggled through work and family over this time.  I want to take a nap every two to three hours.  In the mean time, I did the sleep study thing.  What a hoot.  But that's a whole different story.  However, my thoughts on sleep were confirmed.  I was a world champion.
    So the day arrives!  I get to see the specialist!  The hematologist!  The MAN!  They do some blood work and he examines me.  He says I look as healthy as can be.  Well I go about six foot tall and 200 lb. to 205 lb, 42 years old.  Got a nice Florida tan.  I looked spectacular, considering the usual cancer patients he sees.  I told him what had transpired over the past two months.  He did a physical exam and said he saw nothing wrong with me.  He'd check my blood work and give me a call.  Now I'm a bit disappointed, but I figured wait until he gets a look at that blood.  Sure enough, two days later they call.  I've got an appointment the next week for a bone marrow biopsy!  I still know nothing but this can't be good.  I tell my family and friends and I believe they started to plan my funeral.  People were telling me how painful bone marrow biopsies were.  So I attacked the internet and gathered all the information  I could.  It didn't appear that difficult to me.  The information I gathered was right on the mark!.  I've had two bone marrow biopsies now and mine were a piece of cake.  The girl gave me a shot, to numb the area (back hip bone above the buttocks), inserted a needle and it was done.  I've had more pain at a dentist!
    I see the doctor a week later.  He says I have Hairy Cell Leukemia.  It's about the rarest form of leukemia.  He sees two or three cases a year.  The good news is...............IT'S THE MOST CURABLE!  All of the sudden, I feel great!  Finally, somebody has pinned down why I had felt like a three-toed sloth for the past few months.  This doctor lays out the plan.  I'll need to have a CAT scan.  I will get a picc line installed in my arm.  I'll wear a pump, in a fanny pack around my waist, for a week.  This device will pump Cladribine, also called Leustatin, in my body 24/7 through the picc line.  If I'm dreaming, don't wake me up!  I want to kiss this man's feet!
    So I have a Cat scan and have a picc line installed.  Both are harmless procedures.  I start the Cladribine / Leustatin during the second week of March, 2005.  I had the normal reactions to the medicine, which I had researched on the internet.  About day 5, I started to develop a rash from my head to my knees.  I also had a low grade fever of about 100.5 F.  You have to be careful of the company you keep, while on this medicine.  It's what I call non-discriminatory. IT KILLS IT ALL!  The good, the bad and the ugly.  So I just sat around the house.  I couldn't be exposed to germs.  Overall, I felt pretty good during the whole process.  But on day 7, when I visited the clinic to remove the pump, I felt like the walking dead.  A zombie, if you will. Ole Cladribine had worked me over real good. Since I have no white blood cells, I get a prescription for some antibiotics. They give me a shot of Neulasta in my arm.  Neulasta helps you to produce white blood cells faster.  The doctor says go home and wait.  I'll see you in a week.
    So over the next three weeks, I visit the clinic weekly.  They do some blood work and I leave.  About week four, the doctor is ready to see another Cat scan and bone marrow biopsy. I have another Cat scan and go home.  Then a problem develops.  I've turned a humorous shade of pink that evening.  I'm in no pain and go to bed.  I awake around 04:00 A.M. ON FIRE!  Somebody call my boys at the fire department and put me out!  I'm red as a lobster! Looks like a bad sunburn.  Itching from head to toe.  I take some Benadryl and call the doctor when they open.  I seem to have had a reaction to the contrast media, injected into my body, during the Cat scan.  He puts me on Prednisone and after a few days, everything works out.  I get my second bone marrow biopsy, go home and wait another two weeks.
    Then on April 20, 2005, a day that will go down in infamy!!!!!!!  I get the news!  Doctor walks into the room smiling from ear to ear.  "YOU'RE IN REMISSION!"  "THERE IS NO SIGN OF HAIRY CELL IN YOUR BODY."  I'm thinking remission hell.............I'M CURED!
    So there's my story.  Here's what advice I can give you.  Have a lot of patience.  From the time I was diagnosed to the end was only two months.  It felt like a year of house arrest.  Find out all you can of your procedures and treatments.  It eased my mind to know beforehand, what I could expect.  I've shared this story with you because I feel like the poster boy for hairy cell leukemia.  After reading the other stories on this website, I was compelled to share with folks, how easy this disease is to beat.  The medicines have come a long way, considering the treatments ten to twenty years ago.  If you wish to contact me, give me a shout here  johncal2@verizon.net
John Calandros