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Hello to all!  I hope this account finds each of you doing well with your spirits high.  In the beginning of my journey, I looked many places in order to find personal accounts of people and their journeys with HCL.  Noting that most were becoming aged and tended to be rather bleak, I would like to offer mine as well.  My journey began on April 11, 2006.

 After having a couple of extremely demanding weeks at work, I just could not get caught back up on my rest.  Normally, being a very physically active 45-year-old business owner/manager with many outdoor related hobbies, I bounced back quickly.  Some of the younger guys on field crews often asked how I could manage to go back and forth between desk work and field work so easily.  This was as they were “taking five” to rest as I would hurry around the job sites checking on details and waiting for them to catch up.  But now, I didn’t even want to get out of bed in the morning.  A physical was scheduled with my local doctor.  They did blood work first and then off to the EKG.  While buttoning up my shirt from the EKG, the nurse came in and took me to the doctor’s office and asked me to stay there until the doctor came in.  He had not even seen the EKG; what was up?

 He came in with a piece of paper in his hand and a pale look; paler than mine.  He asked if there was someone that could pick me up and take me directly to the hospital.  I replied yes and called my wife.  He then showed me my CBC and tried to explain.  My HGB was 6.8 and my NEU was 21; he could not understand how I was walking around.  Of course, at the time, I did not understand those numbers.  My MD had said he had contacted the best oncologist he knew.  He said the specialist had treated his father.  I didn’t have time to ask him for what condition but rather if he had survived.  He had not.  My wife arrived and took me direct to the hospital.  We just thought we were scared then.  It was Tuesday, noon, Day 1.

 After fighting through the hospital admittance red tape, they proceeded over the next 18 hours to give me nine arm sticks and thirty-two blood tests.  I did see the new doctor (let’s call him Dr Z) for a few moments on Tuesday evening.  He did an interview of my life style.  Any exposure to leaded gasoline, solvents, agricultural chemicals, etc?  I thought he was looking for a toxin.  He was looking for a cause.  As the nurse was hanging the last of three units of blood later that evening, I was quizzing her about Dr Z’s comments.  She answered with very brief statements but in the end made a comment about how things could “turn out great; just look at Lance Armstrong”.  As that began to soak in, she mentioned I had a bone marrow biopsy in the morning.  It just further crushed me.  We had no one handy to take care of our three-year-old and I had sent my wife home to take care of her.  I waited for morning alone with those thoughts.

 Wednesday (Day 2) morning was the biopsy.  Not that bad; Demerol is great!  My wife was now with me and we waited through the day, through the remainder of the tests, etc.  Physically, I felt super charged with the “new” blood.  I thought I had experienced stress before; never to that point (let’s call it a 7 on the 0-10 scale).  At about 6:00 pm, they wheeled me down for an X-Ray.  While riding in the wheel chair, my record book was laid in my lap.  I began skimming it until I came to the transcribed doctor’s notes.   He had three words with question marks in the possible diagnosis paragraph.  Leukemia, lymphoma and something else I can’t remember (or pronounce).  Upon arrival back at my room, I asked for my nurse and my chart.  I turned to the page and asked for printed information on those conditions.  She hesitated and I insisted.  She returned within ten minutes with data from the hospital library.  No need to go further but this definitely sunk us to a new low.  Before we broke completely down, we were given a phone number and asked to call it.  It was Dr Z’s cell phone.  He apologized for the delay in diagnosis but he had wanted to consult with two others before he made the call.  (I understand and appreciate it now).  Hairy Cell Leukemia.  80 to 90%.  Short, mild chemo.  The words streamed over me, both shaking me and relieving me.  Dr Z said to call his office and schedule an appointment for Monday.  Bidding him good night, the nurse then handed us another packet of information, this time on HCL.  My wife and I scanned it as they checked us out of the hospital.  How does one try to describe the swing from an emotional valley of discovering you have cancer (especially one with leukemia in the name) to some kind of higher ground when you learn the long term prognosis?  Tough to take, yes, but tougher mental swings are ahead.

 My diagnosis is classic; 45 year old, white male.  Background of exposure to many things that can cause this condition.  My spleen had been enlarging for three years (had not gotten large enough to cause discomfort and I teased the wife about how hard my stomach was!).  The biggest hint should have been the inability to fight off simple colds.  I never caught a cold or flu but for the previous two years had had to make five trips to the doctor for antibiotics to get over them.  I thought I was getting old.

 I know now why Dr. Z gave us four days before seeing us.  He was letting us get educated and get through that early portion of mental and emotional swings.  At this point, you will begin to understand why you constantly hear that “it is all in your attitude”.  I agree but not totally (more later).  I would not want to travel this path without my faith in God and optimistic attitude.  The four days also gave us time to make personal and business plans for my course of treatment and its required absences.  The hardest part was telling my employees at work, my family and close friends.  Little did I know the support I was to be receiving from these folks.

 Monday (Day 7) arrives and we meet with Dr. Z.  We are fortunate in that our nearby large town has a very large and well funded cancer center.  It turns out many highly qualified doctors who come to the area to work at that center and then spin off and open their own practices.  He meets with us cordially and goes through his brief but to the point explanation of the disease and treatment overview.  That part lasted five minutes.  As he began to rise, I asked if he had time to answer a few questions we had.  He answered yes and sat back down.  As my wife and I both pulled out legal pads with pre written questions, I saw his eyes widen.  We began and he quickly settled in, becoming more comfortable as we asked more.  His explanations became longer and more detailed as we soaked it all in.  Our main worry was about the number of cases he had seen and did he feel comfortable treating this rare diagnosis.  He had treated two other cases in seven years but had actually worked with some of the doctors who had done some pentostatin research.  His demeanor convinced us; we were staying home for treatment.  The session lasted an hour and half and I think he enjoyed it.  We were then introduced to his staff.  Cladribine was discussed as the best option and the nurse discovered it was not immediately available.  My wife and I had a few things, including a personal event for the following weekend we had wanted to attend.  After discussing the neutropenia precautions and a scheduled blood check before going out of town, we scheduled the following Monday for treatment to begin.  We made the meetings we had needed to attend and I went in for a CBC on Thursday.  Too low to go out of town, so it was back to the outpatient clinic for two units.  We left Friday and had a ball, basically forgetting the upcoming events.  However, our fellow shooters had discovered the events in our life.  They all signed a big target as a get well/see ya soon card (it holds a high place in the trophy room) and even had a small fundraiser for us.  Talk about a jerk back to reality for the trip home.  So glad we had a couple of close friends riding with us.

 Monday (Day 14), 8:00 am was to the surgeon for my tube implant.  I had discussed two options; a port and a tube, either placed around the shoulder.  Choose the tube and be thankful for this device.  It may not have as much freedom (have to cover it to shower and you have this little white tube hanging out of you) for the duration but it requires less of a procedure to install, way less to remove and less chance of infection.  Ports are for very long-term treatments.  In either case, NO MORE ARM STICKS!  By 12:00, we had eaten a quick lunch and were at Dr Z’s.  They explained the pump workings and plugged it in.  Folks, this is both the kill and the cure.  The nurse gave have us two prescriptions for anti nausea meds and said if this one did not work, take the other.  She discussed the warning signs (fever, chills) with an urgent tone, gave us two numbers each for two nurses and the doctor (believe it or not) and sent us on our way. On the next day (Day 15), we stopped by for a quick check. Everything was going fine. I continued to work from home mainly and was really glad we had gotten our new home in the country finished a few months ago.  It gave me room to both work and move around.  This kept my attitude looking up.

 The next appointment was Thursday (Day 17), the fourth day of treatment.  I had begun a mild fever (100.6) the evening before.  Tylenol knocked it down and my appetite was still fine (no nausea).  My CBC showed low HGB again so it was back to outpatient for blood.  A mixup there delayed me there and I did not finish until 8:00 pm.  My attitude was getting a little grey since I had a fever episode while getting blood.  Nonetheless, I was back home with new blood, right?   That night the fever hit 102 and the night sweats began.  Let me explain that.  After the fever and chills are gone (Tylenol was still working), I would still get drenched in sweat during the night.  No one has explained this to me yet and it caused me sleep problems.  Waking up soaking wet is just not right.  While at the Dr Z’s office, they gave me prescriptions for two oral antibiotics and said to follow carefully the warnings, mainly about the side effects and to take them only after meals.  However, no one said anything about not taking them together. 

 By Saturday (Day 19), the appetite was gone.  The problem was spiraling downward.  During the fever, which was now cycling every four to six hours (the effective length of Tylenol dosing), I could not eat.  Afterward, I was too tired to eat.  Taking the antibiotics made me ill (no food in the stomach).  I pulled up my inner strength and forced myself to tough it out until Sunday (Day 20).  The chemo ran out at 5:00 am Sunday morning.

 At 9:00 am, I called one of the nurses and she said to meet me in an hour to remove the pump and service the tube implant.  While at the office, she asked how long I had been chilling.  I told her and she made sure I was to be back the next morning.  She said it might lighten up since the chemo was through.  She was right but the outcome was wrong.  Realizing it now, the stress level was maxxed out.

 Monday at 9:00 am (Day 21), I am rattling the legs on the couch in the waiting room.  The fever did leave (well, down from a peak of 103.5 to 100.5) but the chills were unstoppable.  I had not eaten more than a few bites in 48 hours.  While taking a blood sample, she looked at me and asked if I was light headed.  I remember her face being out of focus as she said it and my reply seemed out of body.  Well, yes, I believe I am.  They wheeled me into a lounger, stuck on a bag of IV fluid and immediately started an IV antibiotic.  I think I scared them.  After coming back around, I remember hearing them say it was off to the hospital.  At that moment, those were comforting words.  Was I scared?  No, I was too sick to be scared.  I had fought my fight.

 I remember now the doctor and nurses saying that if I made it through chemo and chemo recovery without a hospital stay, they would be surprised.  Typically, I like to surprise people.  I consider myself to be as mentally strong as anyone.  This can take you too far.  Sometimes you have to let yourself give in and let the miracles of medicine take over.  After all, it was that “miracle of medicine” that knocked you down so hard in the first place.  The neutropenic fever was masking a small infection.  It was nothing serious but just compounded things.  Actually, Dr Z thinks the neutropenic fever causes the internal infection.  We had been very carefully about guarding against any outside sources of infection.

 After going direct to my awaiting hospital room this time (we found out there is a way to get this done), they started me on the same routine for the next three days.  Two pints of blood, IV fluids, a course of three different IV antibiotics and an IV anti nausea (that one seems odd, but I did not complain).  By Tuesday (Day 22), the appetite was coming back.  The fevers were lessened in length and severity.  On Wednesday (Day 23), look out pantry!  I had lost 16 pounds in 5 days (169 to 153) and I wanted it back!  Fever was gone; I actually ate too much at one meal (watch out for this, the resulting gas hurts).  You need to come back with small meals and snacks between them.  After discovering that, since they have you awake every two hours anyway in a hospital, I would put out snacks for twice a night!  Between the fluids and food, I put back four pounds in three days and was looking for a way to escape or someone to arm wrestle!  Kind of hard in a cancer ward though.

 On Thursday (Day 24), I don’t get to go home as they said might happen.  No setback, it is just that Dr Z is going to be out of town all weekend and wants to make sure everything is perfect.  I stay one more day while they run the standard IV antibiotics and test me for compatibility (?) with another.  I can handle the other (I think it is a more effective, broader spectrum coverage) but I will have to come in and get it daily over the weekend.  Regardless, how can I not be happy after being admitted in a wheel chair and a haze just two days ago?  Besides, the food is really pretty good here.  They just weighed me and I am up to 161 pounds.  I know most is fluid (all the IVs) but that is OK.  Being hydrated keeps down the mouth sores.  Best news; the Neupegen has already kicked in.  My HGB is up to 9.1 and the WBC is up from .1 on Monday to .5.  Did I mention that my enlarged spleen has disappeared?  I think the road to recovery is coming into view.  I was released from the hospital on Day 25.

 Days 26 and 27 required outpatient visits for an IV antibiotic and Neupegen shots.  The next day, Monday, Day 28, came the Neulasta injection with the bone ache warning.  Yep, I got the bone ache.  Lasted about four days.  Tylenol for the first two days and just stuck it out the last two.  You kind of get used to it.  But the best part was on Day 31, the CBC showed a big jump in all the counts.  Made the bone ache disappear.

 Day 39 was the great news.  No more neutrepenia!  Counts were high enough to discontinue the high level of guarding we had held up against infection.  Man, was it great to shave with a real razor, eat fresh fruits/vegetables and have pepper on it all!

Day 40 brought a minor setback.  I had a mild fever (102), body aches and had developed some odd, red splotches on my trunk (stomach, back and chest).  Also, my red blood count was low.  However, we could not do a transfusion due to the fever.  The next day, after going back to the outpatient clinic and being right on that fever limit (101.5), my nurse told the clinic to proceed with the blood.  My fever fell within four hours and the splotches were gone in two days.  The nurses/Dr Z think it was all related to the up and down of the red blood count.  Who cares?  I am feeling great!

 Day 66 brings the long awaited follow up biopsy to determine the overall effectiveness of the chemo.  Knowing what to expect, the biopsy goes fine.  Now, again comes the worst part; waiting.

 Day 73, we march to the Dr’s office with our highest hopes and get the answer we had hoped for.  The bone marrow shows no sign of HCL and all CBC is normal.  I bid my tube goodbye and they remove it.

 I am now in that unknown mode.  I will have to regular (six to eight week) CBCs and they want to do another biopsy in six months.  I am not sure if this routine will continue or if that gets stretched out further, based on my overall condition.

 In short, after 73 days, I am more or less back to normal.  I can’t say things will ever be completely as they were before, mainly because of the knowledge of what lurks within my body and the trials we endured.  Probably the best way to explain it is simple; I have a new outlook on life.  My wife and I had never really had to lean on the support of others.  Matter of fact, we had always been the ones that others looked to when help was needed.  I had never required any emotional support from friends and family.   I certainly discovered how much others really care and how deeply generous people can be.

 Lessons to learn:

#1—Take an active role in your treatment and recovery.  Rely on health professionals but do not follow them blindly.  Educate yourself, ask questions, be an active participant.  Know your body and what it is telling you.

 #2—Lean on others when you need emotional support.  Call or go see someone, cry on their shoulder, get a hug, and get that emotional boost you need.  Internet/email works wonders when you can’t leave your house/hospital room and are isolated due to neutrepenia.

 There are many, many details left untouched in this account.  If you have any questions that I might have an answer, don’t hesitate to contact me at JimJLEquip@aol.com.  I will not mind at all; the best way to feel better about this ordeal is knowing what is going on.

 Best of Luck,

Jim Bodkin; July 5, 2006