It’s not the type of weekend you would sign up for. After a hectic week with two hospital visits for a pleura drainage, blood-transfusion and PET-CT we were expecting results from the scan on Friday afternoon, still in time for Jenn to cancel or change the tickets to the US.

The results were not good. Four new metastasizes have been found outside the bones! That’s scary and was a great shock for us. One of these spots had lit up in the November scan as well, but was identified as not significant at that time. Well, unfortunately, that did not seem to be accurate.

Details will be worked out by Paul this week in direct contact with the oncologist. This will very likely include a new medication regime. And of course, if better drugs would exist with less side-effects I would already have had them, so it can only become harder for the body now.

Next to the bad news we also had neutral news and good news. The neutral was that no cancer cells were detected in the pleura liquid that had been taken out, but no conclusion can be drawn from that. Neutral news, means useless, something like "Paris Hilton photographed entering the court-room". Yeah, so what?

The good news, and this is really astonishing if the overall diagnosis is ‘progressive’, is that it seems that the bone-metastasizes lit up less than on the previous scan. This would at least mean stabilizing, if not cancer spots being in remission. To early for a party, but this is at least a newsflash.

This is also the kind of miracle I need every now and then to get the confidence back that I can still win this race. Winning means that I decide how we run the race and not the oncologist nor the cancer.

We decided Jenn and the kids still would go to our family in the US. For the last week I have not been able to play the daddy-role that I would like to play and that really started to hurt me. Also for the kids it would be good to be ‘on holiday’ and be in a completely different environment for two weeks playing with their cousins 24/7.

Katy was completely ready for the trip. She wore her favorite pink skirt, had her Dora backpack and her little make up box. In the plane she behaved like a real traveler. ‘You would have been so proud of her’, Jenn said to me over over the phone after their arrival. Sam is easy going, as long as he can move around and jump on mama’s lap. So that’s what he basically did for eight hours. Pour mama.

I was really sad seeing them go. When they left I played the song ‘Ain’t no Sunshine’ a couple of times and cried for about half an hour till my brother and sister came in to comfort me. Soon I felt better and I started to realize I needed this outburst of emotion. I needed this two-week break even more than I realized. I hated it that I could not be the daddy that I wanted to be. Reading a book was getting to hard, since the kids would comfortably sit against my belly and I would not be able to breath and read anymore. I hated it that the illness suddenly became so visible.

When we arrived at the hotel I first sat down in a lazy chair outside in the sunshine. Relaxation started. I did not have to do anything anymore. I did not have to be anyone anymore, I could just be myself and get myself taken care of. "Ask, ask, ask whatever you think you need or makes you feel more comfortable. You need it now!", Maud told me when she and Tom were doing the kick-off exercise for this retreat. I fell asleep halfway, but did not want them to go yet. It calmed me down knowing what the main purpose was of me being in the hotel; return to my deeper self, find emptiness and peace and not worry about anything at all.

The other goal is to increase physical strength (mens sana in corpore sano). Since today I am having oxygen in my room, which helps me mainly during my sleep. You don’t realize how much energy it costs to breath, until you have a lung-deficiency. Trying to get enough air in kept me awake at night and made my heart work twice as hard. That’s both not good. So soon I should be able to swing and bike again, carefully, and hence start to use my weakened muscles.

Thank you all, by the way, for your extra attention emails an voice-mails as a reaction to one of my last blog entries. For this week I am going to take it very easy and won’t have any visitors. what I look forward to though, is going to the concert of Verdi’s Requiem on Friday with some fraternity friends. I’ll bring my mobile oxygen system and a wheel chair and see what the effect of a life classical concert has on me now as opposed to fifteen years ago. My ears must have changed.

Is it a myth, by the way, that granddads always have big ears? Do ears really continue to grow. Granddads must be good listeners then!

Joost

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