Recovery mail 5 : Real Men Have Tattoos
Saturday, April 9 2005
Dear Friends around the Globe,
- Been there, done that.
On January 14 I received my last dose of chemotherapy. In February I went to the hospital daily for radiotherapy. And then on February 23 at 2.30 PM something remarkable happened : I finished my treatment.
To have my 14-day cycle from chemo to chemo extended with a 15th day and a 16th and so on, was already a heavenly gift. But after the radiation-treatment I didn’t have to go to the hospital for quite a while… wonderful yet very strange. Every day since the radiotherapy ended – or at least every week – I am feeling stronger than before. Now that my body has recovered from the worst blunt blows of chemo – I feel a new phase is at hand. Wait and see.
- The last long weeks of chemotherapy.
The (side-)effects of my treatment started to dominate. My sleeping rhythm was disrupted because of my heart-problems, making me not fall asleep before 5 AM, which in turn wrecked the rest of my day. I didn’t rest well when I was asleep anyway. Meetings and appointments freaked me out. My skin color was pale. I used special water from my dentist to prevent a bacterial infection in my mouth. I was bald. I vomited. The veins in my arm were hard. More than half of my toenails fell off.
My friends were absolutely invaluable.
- Radiotherapy.
Not a really big deal (in comparison, that is). The radiotherapist prescribed 15 doses of x-ray radiation, directly following my chemotherapy. Later, she raised this to 18 doses (does this give you a feeling of a déjà vu?). Of course, this radiation is much more intense than x-rays used in a x-ray photo or CT-scan. The remaining tumor-cells are especially prone to application of x-rays, destroying their DNA and preventing them from dividing and multiplying.
As preparation for the radiotherapy I got all kind of lines drawn on my chest and… three tattoos. It took quite a tumor to do the job, but now I’m a real man after all!
During the first three weeks of February I went to the hospital daily on workdays and got some 30 seconds x-ray radiation applied on the front of my chest and some 30 seconds of radiation on the back of my chest. Special tailor-made blocks of lead blocked all radiation outside the optimal radiation-area as calculated by computer, taking into account the organic shape of the remaining tissue of the tumor, the position of my lungs, bones and heart and even my personal breathing-movement. You don’t ‘feel’ radiation in any way – only the local side effects which occur after a while.
The irradiated skin turned red and became very sensitive. I had to apply talc powder daily – the perfume of the Zwitsal made me smell like a baby again. Only after all irradiation-treatments finished I was allowed to put moisturizing salve on it. The treatment caused an irritated esophagus (’slokdarm’) – preventing me from eating hot, cold, spicy or tough food. Also my lungs were irritated sometimes causing a heavy coughing-attack for some minutes. Nevertheless, I was very happy in this period for not having to go through chemotherapy anymore. I became more human everyday.
Friends of mine surprised me by dropping by the hospital after my last radiation-treatment and drinking Champagne with me on the big square in front of the Leiden University Medical Center. It was pouring and windy and cold, yet a whole lot of fun. Afterwards we had a wonderful (tipsy!) lunch together.
- 231496 out of 231497 is very good.
After the problems with my heart which I reported in my last email, my hematologist sent me to cardiologist. The cardiologist thought the problems I experienced a couple of times could be cardiac auricle-arrythmia (“boezemhartritmestoornissen”). This is not dangerous in my situation, but in order to make sure my heart was in sound condition he decided to perform two investigations : an echo-doppler and a holter. He said I was the youngest patient at the Cardiology department and promised to look well after me.
The echo-doppler is the same type of investigation pregnant women get when they see their unborn child in black and white on a ’sonar-screen’. It is amazing : because of small doppler-effects (changes in frequency of the reflected sound waves caused by the flowing blood) they can measure all flowing speeds of your blood in the different sections of your heart. Very cool. I asked the nurse whether it was a boy or girl, but she only said everything was looking just fine.
The Holter-investigation was something interesting as well. They put 7 electrodes all over your chest which are connected to a small portable computer in order to make a continuous electro-cardiogram (ECG) of my heart for 48 hours. I wasn’t allowed to take a shower, but otherwise I could behave normally. I was impressed with the results of the analysis afterwards: of the 231.497 hearts beats measured during these two days, exactly one (1) heartbeat was out of rhythm, a little too early. Furthermore, I experienced some heart-problems during the measurement, but the ECG didn’t show any aberrations at that time. Conclusion : I do suffer from the side-effects of the chemotherapy, but my heart is in perfect condition. I was very satisfied with these results. Since I finished my treatment, the heart problems already diminished to less annoying levels.
- Cold Turkey.
Sanne and I had enough of it all and went to Belek in Turkey for 1.5 weeks in a great 5-star hotel, Xanadu Resort. An amazing place in the Turkish riviera, with everything included from bowling 
to dining in one of the 6 available restaurants. We had 2 days of great weather and had fun in the sun. We rented a car and visited Antalya and some beautiful ruins nearby. Since it was low-season, we practically were the only tourists around. We had the fantastic ruins of Termessos all to ourselves. Fabulous.
Unfortunately, Sanne’s grandfather passed away at the age of 92 in the Netherlands during our trip and we returned a couple days earlier than anticipated for the memorial service.
- My new handicap!
I have to inform you that this handicap is here to stay. And I will go to great lengths to improve it. Last Monday, Clemens, Matthijs and I passed our golf-examination (‘golfvaardigheidsexamen’), allowing us to play on every Dutch course/ Officially this GVB-exam automatically yields a EGA-handicap of 55, but we don’t tell anyone afraid of being laughed upon . Hopefully this number will come down sharply during the coming months.
- Medical prospects.
In the coming year I will see my doctors every 2 months and will get x-rays photo’s taken more or less every 3-4 months, with a more precise CT-scan somewhere next winter. On April 20 I will get a CT-scan and all future photo’s and scans should reproduce that image.
There is no perfectly fitting study (for only people my age, with my health, with Hodgkin’s disease in the same phase, etc), but huge studies show that Hodgkin-patients like me have something like a 80-85% chance of being cured and never seeing their cancer return.
Almost all patients who do see cancer return, see this happens within say 5 years after their treatment. If the cancer doesn’t return in those years, chances are very very small it will ever return. Again, fortunately Hodgkin’s disease is a form of cancer which is very curable.
My doctor stresses that I have received the ‘optimal treatment’ with the maximum doses of chemotherapy and the maximum doses of radiotherapy allowed. This should do it.
- A new phase is coming up.
As you could probably already tell, during the last 2 months I have just been allowing my body to recover and relax. Just to enjoy life. Since last week, I entered a new phase.
I’m getting up ‘early’ in the morning and going to bed ‘early’ in the evening as well. I sleep better. Both my mental and physical energy have increased. I have picked up sports. At first I thought of starting very slowly with fitness and so on. But then I thought, the heck with it and since I was already playing a lot of golf, I just started to play squash directly from scratch. I’ve played it twice now and I must say it went remarkably well. Yesterday I played with three women and I beat them all – I beat Sanne twice to be precise! Haha, I was very amused (they say they let me win, of course).
During the last months I spent much time on my website’s and since last week I got myself into a completely new project, for which I was contacted by a Dutch communication consultancy. Last week we signed the contracts.
And from next week onwards, classes are starting at Erasmus University in Rotterdam. I will follow a couple, in order to get back into the rhythm and to get used to long spans of concentration and deep thoughts.
All of this – normalized rhythm, sports, website’s, classes – contributes to my rehabilitation and resocialization. I aim to be close to functioning normally in September when the new academic year begins. We’ll see.
- Mare.
For all the Dutch : this week’s Mare (the spectator of Leiden University) features me in their front-page article. See http://www.leidenuniv.nl/mare
Almost back in business.
Love, Rogier