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by Alexa Hessemer
My name is Alexa Hessemer. I am 48 years old and suffer from cerebral vasculitis. I met Helga Naujoks in Bingen on the River Rhine on the occasion of a founding of a new support-group. Mrs. Naujoks kindly sent me valuable information immediately and I agreed to write a short article for the newsletter.
The 50th birthday of my husband at the beginning of June 2002 was supposed to be celebrated with a big party. We had been planning everything for a long time, I had even taken some days off. The party was supposed to take place at a small restaurant in a relaxed atmosphere without any hectic ado. On May 22nd 2002 I woke up with a stiff neck. "Oh, not again", I thought, since I had repeatedly had problems with my neck for six years already. I thought, however, my neck would get better soon.
But this time the pain grew more and more intense, so that I went to an orthopaedic doctor. On Saturday the pain was unbearable, the drugs I took did not help. So my husband drove me to the hospital on Sunday morning. The doctors suspected a disc prolaps and sent me to the neurosurgery ward, where I was hospitalised. A few examinations during the following days confirmed that this time I had to be operated on.
At first I hoped to be back for my husband's birthday-party. The operation took place on the 4th of June, everything went well and the doctors seemed satisfied. I was looking forward to being released, since the birthday-party was going to take place the following weekend.
Tow days after the operation I suddenly had difficulties in deciphering letters. I informed the doctors during their visit. An ophtalmologic examination followed. A scotoma on the left hand side was diagnosed. The next day some additional examinations were carried through: MRT, Angio MR, doppler-sonography and a cranial panangiography. The doctors explained everything to me, still I had difficulties in understandingwhat they said. I was transferred to the neurologic ward.
I suddenly realised that I was in a dangerous state, since the nurse put me in a room marked "Stroke Unit" where I was connected to a monitor. I could only think "get out of here as quickly as possible". After all I was okay, all I had was a slight difficulty with reading. The operation of my disk had been successful, the doctors were satisfied. The chief doctor informed me on the examination-results and the therapy that was going to follow. I started immediately on a therapy with high doses of Cortisone. For the first time I grew aware of the term "cerebral vasculitis" I spent the following days in the neurology ward.
Still I wanted to go home, to celebrate the 50th birthday with my husband and the many guests we had invited. I cried and shed some tears, but I had to stay, I wasn't even allowed to get up , this was strictly prohibited!
My husband who visited me on the following morning was just as confused as I. The chief doctor explained to him that cerebral vasculitis was a very aggressive illness and I would propably suffer a stroke if I wasn't treated. He explained the medication with Cortisone and Endoxan. For the first time in this context we heard the term "chemotherapy". Both of us were deeply shocked. I felt so helpless. I listened to all the explanations, asked some questions, but from today's point of view I believe I more or less reacted like somebody in trance, like a robot. I had the feeling of standing besides myself, of watching the scene from another place outside my own body. It took me a week to grasp the situation, to accept that it was really me who was ill. The doctors and nurses were all very kind and nice, they listened to my problems. I felt I was treated well.
My husband's birthday-party took place without me. I did not want him to cancel it, we had planned everything so nicely. Instead of a formal speech I had prepared a little sketch with my sister. My part was played by my daughter, who did it really fine. Everybody enjoyed the party.
I was released after ten days. Some days earlier I had got my first dose of chemotherapy (Endoxan), thankfully without any terrible side-effects. The doctors decided on the further course of my therapy:
100 mg of Cortison daily for three weeks
tapering down to a dose of 20 mg, which I would propably reach in the beginning of September 2003.
Additional chemotherapy will be carried on in a four-week rhythm. This means that every four weeks I will be hospitalised for two days to get an infusion with Endoxan.
To protect my stomach and my bones I will get Famotidin, Vigantoletten and Calcium.
Right after getting home from my hospital stay I felt really fine. Two weeks later my fitness dwindled down. More and more often I had to lie down to rest and I had to take a nap at noon. Small tasks in the household used up all my energy. Writing, reading, taking a stroll, working at the computer, watching TV or even talk for some time was very strenuous. I felt fatigue and started trembling. It happened quite often that I would just fall asleep for half an hour when sitting in an armchair.
At the beginning of my disease it was difficult for me to switch from "living in full" (mother, wife, job) to low level. My illness forced me to do so, I had to do it. I had to learn to accept help from others and to admit to myself "I cannot do this or that alone". I had to learn now and again to say "Stop, I need a bit of a rest now, I am exhausted". My family has helped me a great lot. I t is not easy for them, because I am sometimes restless, obstinate and impatient. Even a fly on the wall can make you nervous in such a state. Even today, nearly six months later, I need a little nap every now and then. There are still days when I am not so strong, but they are getting rarer and rarer. So I hope that after my year with Cortison and Endoxan I will be able to live a normal life again.
By now I have had my fourth cycle of Endoxan. The treating doctors are satisfied with the outcome, and now it will take three months until my next treatment.
The doctor who had carried through the obligatory ultrasound-exam of my heart (this has to be done prior to any chemotherapy) summed up the outcome of the whole procedure in the words:
"You have been very lucky, this is almost a miracle".
Right he is.
updated 03.06.2004