View on Cancer

After the scary news on Tuesday we are still waiting for the lab-results of the pleura-punction.

Since many of you were keen to hear about it today, I thought that I should let you know that no results nor a new plan of action will be available today.

I did, however, reduce the dose of Everolimus today in conjunction with my oncologist. I believe the side-effects get too hard on my body and I still need to recover from ear- and throat-infection.

First focus now is on celebrating Sam’s and his grandfather’s birthday, which was yesterday.

Joost

I feel good. My December colds have almost left me and I am ready for a new year building up my strengths and continuing my healing process. I already made my wish-list of ‘places to go’ as soon as my travel embargo would be released.

But although we know that the threat is always there, we were not ready for the bad news this time. Not again. Not now, when I just got back home and we finally have the feeling that we got our act together at home. Not now, when we started to have so much fun with the four of us.

My lungs have been checked for pneunemia (longontsteking), a known side-effect of the medicines I am using. The lungs appeared to be okay, but I have a huge amount of fluid around the lungs (between the pleura). Yesterday I had a punction and we found out that the color of this fluid was dark red, making it pretty likely to be a metastasize. This would be the first spot outside my bones and a sign of progression of the tumor. On Friday we get the lab-result and we know ‘for sure’.

This was right after meeting with my orthopedist who suggested that I could carefully go on a car-ride or even a short plane-ride. That means I can go out and smell the woods, breath-in sea-air and even see mountains or enjoy an early spring in the south of Europe.

Within one hour the holiday dreams were gone, and Jenn and I were in a little shock. No idea yet what the pleura-fluid means, but we were definitely scared.

For a moment I even felt mad inside myself. It is so much easier to have a symptom and you go to the doctor who can tell you what it is and how he can treat it. In my case, I do not have any symptom, I can breath normally and feel generally good, I even saw photos of my bones indicating no further development (which is great news). And then my oncologist tells us I am likely to have metastasized cells around my lungs.

No imminent actions is to be taken, we first await the lab results. But still, my head is preparing for the discussion with the oncologist. A ‘sign of cancer-progression’ is normally answered by throwing in more chemical soldiers. On the other hand, cancer is known to attack the patient at the weakest spots all the time. The new anti-immune drugs, the December colds and the antibiotics have put a lot of pressure on my lungs, so no surprise that that is seen as a weak spot by the tumor now.

Theories about resisting a cancer by chemicals or by the body’s immune-system now have to be combined and we need to find the right balance.

Balance in life. This is literally going to be my theme in the coming period. Balance between working on my healing and having fun with the family. Having a balanced diet and balanced exercise with enough rest. And now, balancing the pharmaceutical drugs in such a dose that we have enough troops to attack the bad-cells, but avoid killing our own soldiers (like this week both happened with Dutch as well as American troops in Afganistan and Irak).

Soldiers being killed by ‘friendly fire’. That is what needs to be avoided to any price.

In the meantime, I am preparing myself for my first car-ride outside Wijk bij Duurstede.

Joost

December was a great and tough month. We had great high-lights, like Sinterklaas, the band-performance in the castle, Christmas, New-years. I had a lot of energy. But we also picked up all the flues and colds that were available.

For that reason I had to stay in the Cure-hotel for a second week (the owner simply did not let me go, since I still had a terrible cold and fever). By the end of the second week I got a new blood-transfusion, after a three-weeks interval this time, instead of the regular two, so that was good. Although my blood-values were normal (as low as I am used to), I needed the transfusion badly, I was completely exhausted before the transfusion and could simply take a walk again after. It is magic! Thank you, O-positive blood-donors, or is it ‘Oh, positive blood-donors’, since you got to be positive when you’re a donor.

On Saturday I came home and both Katy and Sam were sooooooo excited. I guess I did not realized how much they had missed my presence. They did visit me regularly in the hotel, but having Papa home apparently was different. We started off playing the piano (Sam and I) and dancing (the two girls).

I immediately felt better. So going to the MBA-drinks on Sunday was not a problem at all. I made sure I took a little nap before I went to the local pub (café De Engel). Twenty-five classmates, some spouses and kids, were gathered in Wijk bij Duurstede, which was a great honor.

How things have not changed after seven years when you put a group of people back together is amazing. Maybe the main difference was that throughout the whole party I did not talk about, nor listen to any career-related story (a favorite topic of an average MBA). I don’t have time to work, let aside to talk about it! But I enjoyed being there, observing my friends and remembering the very special time we shared together in Rotterdam. I guess I was waiting for the Austin-like moment that everyone would start dancing on the tables.

Mentioning Austin, another favorite topic, since both Jennifer and her father were there as well, was that half the group had met Jennifer a year before I did. I could only reply that I gave them enough headstart, but that they really missed the boat, haha!

Glad to be back home!

Joost

No matter how you celebrate, Christmas and New Years are emotional holidays, especially in ‘Times of Trouble’.

I had a great Christmas. Watching a rebellious movie and eating my favorite (outside my diet) cheese-onion potato chips with Sander Ouwerkerk on Christmas Eve. This was the first time in a while that we shared leisure time instead of talking about representing my business activities. Christmas day was with family and Second Christmas day (we Dutch like to extend our holidays) was scheduled to be our pyjama day. No visitors, no phone calls, only my aunt and cousin coming in at 5pm to bring in a complete Christmas dinner. Unfortunately, we all needed the pyjama day to recover from ear- and throat-infections.

The big surprise came one day later. I had already suggested to Jenn that I should go back to the recovery hotel earlier in order to build some resistance against all these viruses and bacteria. Little did I know.

During a walk with Paul van Arkel, by the way without any medical discussion for the first time that year, I decided to show him the resort hotel and pick up the Christmas card, which I was told should be under the tree. We sat down, I opened the card and I read it. I read it maybe ten times, but it really said:

“A voucher for Joost for one week in ‘Kuur en Herstel’, from a very satisfied guest”

The year 2007 has been full of surprises and, so you wish, miracles. This, however, was the greatest anonymous Christmas gift I have ever had in my life. Once again, this could not be a coincidence, so two days later I signed up for another week of retreat. That is where I am now, in my very own room, close by home, recovering from a throat infection and using the swimming pool as much as possible.

For New Years Eve we went over to friends living even closer to the hotel than we do. With four young kids, of which two with a terrible cold, New Years Eve is different from the ones when we were twenty, let’s not deny that. But the excitement (and fear) of the children at midnight comfortably behind the window looking at the fireworks, staying overnight and the pyjama morning with lots of dancing and making funny drawings did it for me.

These holidays make us realize what family life is all about, isn’t it?

I enjoyed every minute of it.

Joost

The year 2007 has not been the easiest year for us. But looking back many remarkable things happened.

Like many others, my oncologist today wished me all the best for 2008, ‘that it may become a better year for me’. ‘Better?’, I replied. ‘Last year I resisted a sever cancer and we are very grateful for the birth of little son Sam’

For me 2007 is not the year that I got cancer. It is the year of new life and staying healthy despite of a rude intruder in my body! It’s the year that I learned so much about myself and about life. It’s the year that I learned about unconditional love from people and miracles.

So what is 2008 going to be like? It will be a great sabbatical. Of course I will continue to work on my health and enjoy my little family. It will also be the year of the ‘new normal’. We realize we will live with the threat of a cancer the rest of our lives and for sure I am not recovered yet. But from looking back at 2007 and the way we were supported by friends and family in our battle, we can only be confident that we can handle whatever crosses our path.

Thank you all for standing by us during the tough months and we look forward to continue our warm relationship for many more years to come.

All the best for 2008.

Joost

Merry Christmas to all of you!

When the year is about to end people start to look back at the highlights. They remember the big project they closed, the new job they found, got married, the next child that was born or the amazing trip that they took to a far-away country.

My year had many highlights, many moments of intense joy and happiness. More and more I learn to live by the moment and enjoy the wonderful 30 seconds (if not shorter) of a view, a look, a sentence or a feeling. Moments Pro Memoria (to remember).

Last Tuesday I had another meeting with my oncologist about the progress of my recovery. It is noticeable that the meetings start to change. The longer we work together, the more we get connected. Also, he seems to get more and more confused about my recovery, while some blood values technically still are showing major cancer activity . It is puzzling to him what’s going on. I can also tell by the subject of conversation. First the sweating and fever were priority, then getting rid of the muscle aches, now we’re just talking about how to reduce the need for blood transfusions and the possibility of anemia ( bloedarmoede). He finally agreed on subscribing EPO to increase my red blood-cell-count.

We also discussed the option of a bone marrow puncheon (beenmergpunctie) somewhere next year in order to find out the issue with the blood-anemia. He said: “Write it down, Pro Memoria”. For a second I was confused and I thought he said ‘Pro Mortem’ (before death). He had to laugh and said that after death it would not make sense anymore. I replied: “I don’t even think you can do it after my death”. He thought for a second and answered the way not many oncologists will do:

“You might even be right about that”.

There he was, for a split of a second, the oncologist professor who believed in, what he calls, a ‘miracle’.

This was a moment to remember, Pro Memoria.

Joost

That was by far the number one song during our performance yesterday with the RedFoxBlues band. The yearly two-day strategy-meeting was in the castle around the corner from our house. This was a great opportunity for me to meet my RFB colleagues and get a total kick out of playing in a band again.

For Jenn it was one of the first times she saw me playing on stage and she, of course, turned out be a great groupie. She managed to get the male public dancing and turned it into a real party. No photos available since everyone went completely crazy.

This boosted my energy. I made so many endorphins that I forgot all about time, place and carrying a disease. During my solo in Sympathy for the devil I was gone for a moment. I saw everyone yelling at me, but I only heard the music. I was totally in it, hidden behind my sunglasses. You won’t be surprised that in the end I had to be carried home, haha.

Tired and very satisfied I ended up in bed, way too late. I laid there bouncing on the rhythm of the songs that we just had played. ‘Sympathy for the Devil’ we even played twice. ‘Make friends with your enemy’. There was a meaning behind this title, very much in line with my last blog entry about ‘allowing’ the cancer to stay in my house, but never let him kick me out. I have been fighting (negative energy) against my disease for months and since a few weeks I slowly start to realize that using positive energy will be much more effective.

Forgiving your enemy is tough but very releasing. Being mad at someone is something inside yourself not in the other person. He might treat you a certain way that you don’t like, but it is your own choice if you let your feelings be hurt. Often being hurt has to do with things that happened in the past. But you’re not a history book, you are living now. If you are able to really catch the moment, you will not be judgmental and you will be completely open-minded to all possibilities and opinions that are created around you. And you will take them as they are.

Having sympathy for the cancer freed me up. Playing ‘Sympathy for the devil’ got me stoned.

Again a day I will never forget.

Joost

The other day I got a touching story to read about an unexpected visitor called ‘cancer’ (from Piet Weisfelt’s book ‘Aardewerk’). In the beginning he is quietly sitting in the corner drinking a coffee. But gradually he is taking up more and more space in the house. The cancer-sufferer (kankerlijder) knows he will not be able to get this visitor out of his house and yet is convinced he will ‘win’ in the end.

This is touching. I have always been convinced to stay owner of my own house and will not let anyone else take over. Unwanted visitors will be kicked out completely. I have always been convinced to ‘win’. My mind is strong enough, but is my house? This story reminded me of a conversation I had with Jenn a week earlier. We started to realize that there is a third option between winning or losing the ‘house’. What if I will not be able to get the visitor out of house or not let him be able to take over and kick me out?

Honestly I had not given enough thought to that idea during the first half year of my disease. And although my preferred scenario still is my goal, I have to face the second scenario where the visitor and I have to live together for a long time, because I won’t let him get me. This will only be possible if we start to be friends together, living in the same house.

Thinking about it, I have grown since he and I lived together. He gave me many ‘life-lessons’. I can only gain from treating him as a friend and find peace in my house again. Find a new balance in life, a new normal. Whatever the outcome is, I will stay in my house for a very long time.

Going from suffering from cancer (kankerlijder) to personal leadership (kankerleider).

Joost

During a trip through Iran years ago I did a lot of hiking with some friends. We went into the mountains with mules, carrying our luggage. It started out easy, but it soon got tougher as we had to carry our backpacks again and then hit the snow. We camped for one night in the snow and the next day we continued our journey to cross the mountain-pass (bergpas). It was not steep, just heavy to walk in the deep snow, walking in a straight line behind each other and yet trying to keep the spirit up. I did not like it. It was ugly, heavy, boring and cold. Why were we here, while there are so many beautiful places in this country?

This trip reminded me of our tour over the last nine months. It started out easy, but soon got heavier and more scary. There was only one way out, continue the way up until you go over the top. There are moments you think you will not make it. Moments you think ‘why me, why now, why?’. And yet we had to go on. Finally we made it to the top and the next disappointment appeared. Nothing ahead of us, but snow. We felt like laying down on our backpacks and simply slide down. But our experienced mountaineer told us not to do that. ‘Beware of avalanches’, he said, and we were taught what to do in case we would be covered with meters of snow.

That’s where I am now. I so believe I went over the top! The recovery-hotel in combination with the new medication seem to do their work. Or, finally my body is following my mind. It is well-known that matter is slower than the mind and for months I have been waiting for my body to react. I feel like it finally reacted. It picked up the signals I kept on sending. We’re going in the right direction, descend has started! But this will not be the easiest part of the trip. It feels so tempting to fall on your back and slide down. But descending often is even more dangerous than climbing up a mountain. You cannot afford to make any mistake. Also, make sure you avoid any avalanche.

One of the avalanches I could meet now is to become overconfident and start to be too busy again with all kinds of things. I could become less precise on my diet. I feel very good about the reaction of my body, but the job is not even halfway yet. We will go on, but reaching this turning point definitely boosted our confidence in a good outcome. Last Wednesday my oncologist had to walk back and forth to the computer two times, since he could not rhyme my blood-values with my physical condition. My look, the way I walked and my weight-gain clearly surprised him in a positive way. Suddenly the LDH value appeared to be more than a tumor-marker. ‘Let’s not pay too much attention to that number’, he said. I couldn’t agree more.

I need to keep both of my feet on the ground, but should not forget to keep on moving. In the meantime I will keep my eye on what we got as reward when we passed the snow-line. Ahead of us was the most beautiful valley I have ever seen. The most beautiful flowers, a gorgeous view and an easy path to walk on. The mountaineer started looking for the best place to cross the little river. We were flabbergasted when we reached our destination for that day: a hot-water spring in a little cave. While sitting in the water the tour-guide came down with Douwe-Egberts cappuccino. We had forgotten all about the tough road to get here, we were just enjoying the moment.

Although I feel I have crossed the top, there is more snow to go through. But one day, I will sit in that natural hot-tub again having gained a lot of life-lessons on how I got there.

That is what is keeping me going, confident as always. But I am not sure if I will ever sign up for this tour again.

Joost