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How my life went on with HCL
After reading
a lot of stories of HCL-patients on the net, I now want to tell about my experiences with
this disease. My name is Henk Schenning.
I am
68 years old and I am living in Bladel, a village in the southern part of The Netherlands.
I am married to Corry. We have two lovely children and three adorable grandchildren.
During our marriage, we have known several periods of serious illness, my dear Corry and
me. Sometimes it even seemed that we would lose each-other.
On
February 8th 2000 I became ill again. I felt tired and sick and I had a fever. About a
year before, it all started. I was often tired, but I thought that it was because of my
age. I had several infections and fevers. Therefore I used antibiotics, but they
didn’t help me much. After a few weeks, my local doctor who is called Lathouwers,
sent me for a bloodtest to doctor Keuning. Keuning is an oncologist at the Saint Jozef
Hospital in Veldhoven. We met in the end of March and on April 4th he told me that I had
HCL. We were shocked, my wife and me. We knew what Leukemia would lead to. We knew several
people in our village who had died of leukemia. However, we had never heard of HCL. After
a couple of minutes we understood that HCL is a rare type of leukemia and that there was a
big chance that I would stay alive. Nevertheless, this disease would never disappear. I
was told that I would not die because of HCL, but rather because of all its complications,
like infections. So I should be aware of pneumonia and so on. Keuning told me that I was
his second HCL-patient in ten years. This kind of leukemia appears 12 to 15 times a year
in The Netherlands. Our oncologist did the best he could, to comfort us. But I didn’t
feel happy and I was worried about being only his second HCL-patient. The doctor replied
that he had intervision with a team of specialists.
Test
results:
· A lack of
vitamin B12
· Vitamin B12
120 pmol/1
(min. 150 - max. 700)
· Erytrocytes
2.76 10E12/1 (min 4.5 - max 5.5)
· Leukocytes
3.6 10E9/1
(min 4.0 - max 10)
· Trombocytes
40 10E9/1
(min 150 – max 400)
· HB
5.7
Because
we didn’t know much about the disease, we surfed the internet and read medical
literature. On internet we met Woody Hanford and Joop Pordon. They helped us, especially
during these first frightening days, when we were thinking about death. But also later on
they helped us, by answering our questions about chemotherapy and by telling their
emotional experiences.
In
hospital they gave me injections with vitamins; I had a bony-marrow-punction and an X-ray
check-up. My spleen seemed to be enlarged only 1 centimeter, so that was good news. I
think that it was for this enlargement that I had had so much pain, especially in the
beginning of my disease. Because of the pain I could not get into my bed alone, even when
I was sitting upright. Nowadays I still have got pain in the spleen from time to time. To
recover from HCL, I got several blood transfusions and afterwards also chemo-medication
with pentostatin. That was to be the best cure in my case. The whole process would take
one year. We weren’t happy, but the prospects weren’t that bad.
In the
end of May, the oncologist told me that the blood transfusion hadn’t worked out in
the way it was planned. Testresults: HB 5.3, Leukocytes 3.0, Trombocytes 50. That’s
why he proposed to start with pentostatine. After another two blood transfusions and five
chemotherapies this were my test results: HB 6.6, Leukocytes 0.3, Trombocytes 75. Because
of the risk for infection, my wife didn’t accept any visitors in our house. It was as
if we lived in quarantine. In that period our son got married. Wearing a
mouth-protection-mask, I could enjoy his wedding for a couple of hours. I couldn’t
let this happening slip away through my hands, because I love my son! I had talked about
all precautions with my oncologist and Joop Pordon. Thank you Joop!
In July
the oncologist said that I was doing well. He stopped the chemotherapy. I got very tired
and the chemotherapy was troubling me: vomit and sleep. But from that time on the
blood-test-results got better, despite the other symptoms as itch on my head,
skin-infections in my face, and especially stress, forgetfulness, fever and pain in the
spleen. Despite all I was getting better.
Tuesday
first of August. I had a quite good day. ‘Hopefully I’m over the lowest
point,’ I thought. Slowly I got more and more energy and my condition was getting
better. My blood had to be checked every month and later every two months. And now, after
broad a year, on March 22nd 2001: HB 9.6, Leukocytes 4.0, Trombocytes 116! Keep alert for
infections, so the doctor said. But I feel good and I hope the situation will stay like
this fore a while.
Thanks
to my Corry, my local doctor Dr. Lathouwers and my oncologist Dr. Keuning. And last but
not least our children.
Henk
Schenning
henk.corry.schenning@hetnet.nl
