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My name is Joop, living in Holland.  I am a 43-year-old man, married for 17 years and having two children of 12 and 10 years old. This story was, for the biggest part, written about 2½ years ago when I was first diagnosed, and updated for this site. Because of that, my time in the hospital is described pretty detailed and therefore the story is pretty long. But it describes my feelings at that time and I didn’t change it because I think it is more informative in that way. 

I was first diagnosed HCL in June 1998. HCL was a disease I had never heard of before; I only knew the word “Leukemia”. Because of the rarity of the disease the Internet seems to be the best way to get your information from. By telling my story on the Internet I hope it may be of some help for other newly diagnosed patients. How did it all happen?: Tuesday July 14 1998, I woke up healthy (although I had not been working for about a year because of stress and over exhaustion) At around 10.00 AM I did several phone calls, which kept me in my chair for about 45 minutes. When I ended those calls I had some pain in my neck so I took an aspirin but the pain got worse so I called my doctor around 2.00 PM. I went to see him immediately. But he told me that he didn’t know what was wrong with me. Since the pain wasn’t unbearable I agreed to go home and wait and see how the pain would develop that afternoon. My wife had left around noon to stay the night with her sister in Amsterdam(about 40 kilometers,(25 miles) from our home)So I was alone with the children. Around 8.30 PM the pain got worse. So I called the doctor (not my own because he wasn’t on duty that evening) He just told me to pick up some medication (a painkiller and a muscle-relaxer) Because by that time I wasn’t able to drive anymore I called my best friend (a dentist) who lives only 200 yards down the road, but I got his wife (a physiotherapist) on the phone, So I asked her to pick up the medication. Which she did, but with her experience she saw that it had nothing to do with muscles. So she was worried, stayed with me for over an hour, but when I felt a little better I told her not to worry and go home again. Around 11.00PM my wife called to be informed about the pain in my neck. In a matter of seconds she told me she was coming home (later she told me that she hardly recognized my voice by that time). When she got home around midnight, my friend, alarmed by his wife, also came to see how I was doing. They took me to a doctor again but this doctor also told me that he didn’t know what was wrong with me. But because he couldn’t think of any disease that could be dangerous he sent me home again with some morphine pills.  So I went to bed, got asleep immediately.

Next morning my wife couldn’t really wake me up. (I could here her, but I wasn’t able to react or talk) So she called our own family doctor again, who left all his patients in his waiting room and came to see me. He looked at me for a few seconds and immediately called the nearest hospital. While my wife was making calls to find someone to take care of our children, the doctor put on my clothes and helped me into the car and my wife drove me to the hospital. By that time I wasn’t able to walk anymore so she carried me through the hospital in a wheelchair. Because I had gone into a state of shock, I started to vomit in the hall of the hospital. The rest of the story of that day has been told to me because I can’t recall much of that day. After 2 hours of examinations the doctor didn’t know what was wrong with me, so he sent me to the “Academic Hospital of Utrecht”(AZU). Because a) He was going on holiday next morning and  b) because of their better expertise. Even there they didn’t know what was wrong with me so they asked the best doctors and a professor to examine me. During that examination they had to take me to the O.R. because my neck was swelling. So they had to put a tube in my throat to keep me alive and prevent me for suffocation. After the operation they took me to the Intensive Care unit, where they kept me asleep for a week and a half.  In those days the infection caused that my neck grew bigger then my face. I had very high temperatures, antibiotic wasn’t doing its work and my blood counts were very bad. They found “streptococci bacteria” in my blood (which normally can only be found in your mouth). And after a bone marrow biopsy they even found those bacteria in the bone marrow. They later told us the poisoning in the bone marrow was so severe that they expected it be mortal within a matter of days. After 3 days an abscess was growing in my neck, which could cause another blood poisoning.  So they operated me again to remove the abscess. And the tube they put in my throat was connected to a breathing machine all the time. So I was in acute life danger for about 7 or 8 days. After that, my temperature was slowly going down to more normal values, and the worst part seemed to be over. So after 10 days they decided to wake me up again. I don’t remember anything anymore of those 10 days although I woke up several times during those 10 days. The only things I remember were: nightmares full of fear, fear and fear. Than the next few days they narcotisized me twice to take the tube out of my throat but both times I woke up with the tube still in my throat. The doctor said the swelling still too severe to take out the tube. At July 29 a haematologist told me I had HCL (the told me I had a well manageable type of leukaemia). And he told me I had to undergo chemotherapy. Until that moment I had not even considered that there had to be a cause for my situation. I thought that when the swelling was over, I was going home and that would be it. I didn’t panic at all because he told me it was curable. 3 days later the tube started to irritate in my throat, which made me cough and blow out slime through the tube for over half an hour. The only way stop it, was to knock me out with valium (a relaxer) I had about 9 of those ‘attacks’ in two days. Because of that and that I slowly started to realize that I had a malignant disease, I found the bottom of my mental abilities couldn’t cope with my situation anymore. But two days later they narcotised me again and they took out the tube (after 20 days; From which I was conscious for 10 days) I felt reborn; and the next day I was taken to a normal hospital bedroom (out of the I.C. Unit) because the incision of the abscess-operation had not yet healed (leukemia) After exactly 1 month I was sent home. That was very emotional; I’ve cried with my best friends and family. And most of all I found out that my wife had pulled me through all my problems and I couldn’t have managed without her: Her task was so much bigger than mine; When I was asleep for 10 days she had to take care of the children and quide them through this new traumatic experience, she had to cope with the fact that I was in life danger.   So there wasn’t a lot of room for her own emotions, but she could lift the world during those days. So it enriched our marriage in very many ways. And I hope that the patients who read this realize that by the time you get home from the hospital, your wife still has her emotions to deal with.

My haematologist decided that he would use ‘Pentostatin for chemotherapy instead of ‘2-CdA’. The difference is that ‘2-CdA’ usually will be given continuously during a week. And my chemotherapy with ‘pentostatin’ would take about 6 months, starting with once a week, then once in 2 weeks and then once every 4 weeks. He has chosen this therapy because he couldn’t be 110% sure that there were no bacteria left in my neck. So when my neck might swell again, he could stop chemotherapy at any time so that my blood counts could go up and fight the infection (for as much as possible). He said: during chemotherapy you can be cured from any common infection or disease. But I was lucky the first time with the infection in my neck, but he can’t guarantee the same result next time. So that’s why he has chosen “pentostatin” And how right his decision was: After 2 chemotherapy’s my WBC reached (0.3) and I was taken to hospital again with high temperatures. My chemo-treatments were delayed time and again because of low WBC: The blood poisoning had partially destroyed my bone marrow.  All together, at that time, I considered myself to be very very lucky man; Because I couldn’t turn back the clock:  Yes, I had a terrible time at the hospital, but that was all over and, Yes, I did have Leukemia, But of all cancers, HCL is one of the better manageable diseases. So I was looking at the time ahead of me (and backwards only every once and awhile). And the Pentostatin treatment wasn’t that bad. I, sometimes, drove to the hospital alone and went back home again 2 hours later alone. Side effects like (sudden) tiredness, concentration problems, bad short-time memory, very stress-sensitive, diarrhoea, piles etc. were unpleasant, but surely not unbearable. I even think that the time in between the diagnosis and the first treatment was worse than the treatment itself. The fear for the unknown was worse than the treatment itself.

Well, after one year I reached 100% (September 1999) remission. And everything seemed to be OK again. Although my WBC, up till today, has only reached a maximum of 3.9. But my side effects of chemo didn’t disappear, and they are still bothering me and keeping me away from work. I was told that I might not be able to pick up my old job (Managing around 100 people for almost 6 days a week) So I hope to able to start a business of my own as a software-trainer. Another problem is that I started snoring stertorously when I first came out of the hospital, It seemed that my throat was deformed by the tube and the operation which caused a, so called, sleep-apnoea syndrome therefore I have to wear a nose mask connected to an air pump every night, so that I get more oxygen while asleep. Doctor hopes that this syndrome causes most of my problems so that they might still be curable by using this nose mask. So my current problems might not be caused by HCL or chemotherapy or its side effects but by this sleep-apnoea syndrome. HCL was the reason for me to go on the Internet, 3 years ago and it gave me the opportunity to get in touch and meet several HCL patients from all over the world. like the Webmaster of this site Mr. Hanford. And after first being helped by fellow patients I volunteered for informing newly diagnosed patients, which is very rewarding. So I would like to tell all newly diagnosed patients: There still is life after your diagnosis and there even is life during treatments. And remember that, on the Internet you might conclude that almost every HCL-patient gets a relapse, but that is far from true. Most of the cured patients don’t communicate anymore on the Internet after they are cured. This is my first contribution on a website ever since two years, because of this great new site of Mr. Hanford. 

Feel free to contact me with any comments or questions about my story or about HCL in general.

My E-mail address is jooppordon@xs4all.nl

Good luck to all of you.

Joop Pordon

Holland