Wednesday, September 10, 2008

Day 30 & 31

Business as usual plus meeting with dentist and radiation oncologist. They all hope that I won't experience a post treatment peak with regards to the side effects and are satisfied with the current results.

I hope too, that the side effects won't peak any further. Having seen some other patients I must be happy with how it went so far. I've lost about 7kg (went from 71 to 64) but I've been told 10% is somehow not to bad. I've always known that my oral flora will react stronger and hope it will recover soon. I've learned a bit better to eat without taste and expect that to recover too.

We don't know yet how effective the treatment was but I'll post the outcome in about 5 weeks.

Two more days to go .-)

Friday, September 5, 2008

Day 25 - 28, radiation is to kill tumor cells

The last few days I just did the usual program. Met with the radiation oncologist and my neck, nose and ear specialist. You wouldn't believe how different they are with regards to communication and thinking outside of the box. The radiation oncologist isn't interested, willing or motivated to look outside of the radiation field at all. When I've challenged her with my concerns and questions about the massive side effects, the unknown symptoms like "fatigue" and the gap that comes from not looking at the body as a whole she just mentioned she wouldn't have time to work on anything outside of the radiation itself and she wouldn't know how to methodically approach symptoms like fatigue. She is in that field for more than 15 years and has treated hundreds of patients. From talking to at least 20 other radiation victims I can tell you, every single one has to deal with this symptom.

Even though I've been able to cope with the treatment so far and I believe it helps I cannot lose this thought, that the approach itself is systematically wrong. Given 40 years of development and research I would expect better results than a success rate of 60 - 70 %. They haven't found better ways to kill oral tumor cells yet so they have to stick with it. Maybe they haven't done as much research as with other types of tumors as this type of tumor is relatively seldom.

The neck, nose and ear specialist on the other hand is very approachable. When I was talking about the fatigue with him, he shared with me some of his experience and he confirmed that many radiation oncologist deny the existence of the fatigue. They deny it because they cannot measure it.

That's the issue with scientific medicine. It requires measurability. The human body is far too complex and sciences hasn't figured out how most of the immune system works for example. What impact for example the mental conditions have is unclear and because it's not measurable it isn't a part of the current scientific medicine.

Going through this treatment makes me realize how much scientific medicine isn't covering. It's a bit scary.

Anyhow - I have two days rest in front of me and then another five days to go. Afterwards I need to recover, wait 4 - 6 weeks and do another PET. The PET won't only show if there are still bigger lymph nodes around but also if they are sugar active. Sugar active would be a bad sign and mean they are most likely still tumor active. I feel confident they won't be but let's see once I have the PET.


Monday, September 1, 2008

Day 24 - it's not only physical

It took me about 5 days to recover from the cold. I'm not losing as much weight per week anymore and my energy level is acceptable. On the other hand my mouth is very soar and my skin around the neck starts hurting and bleeding.

The therapy is heading into it's last third and as it does I suddenly start realizing how little  mental energy I've left. Every little mental noise is getting at me as if it was amplified. I'm not stress proven anymore. Living with me must have become harder for my loved ones. My 4 1/2 year old daughter and my wife (a few days away from giving birth to our second child) are paying their tolls. That's not fair and I'm trying to fight it. I'm meditating. One of my themes is compassion for others but quite frankly I often feel empty. How can I feel compassion if I'm empty. From time to time I would like to escape all social activities. 

All the discussions at the beginning with the experts where about the side effects, the duration, technicalities and logistics. Very little went into the mental aspect. Of course everyone tells you this is heavy stuff but no one can tell you exactly what is happening. 

Why is it heavy? What makes it heavy? As you might know one cannot feel anything during the radiation itself. It's like an insensible plague. I understand that the DNA of healthy and unhealthy cells are being altered but I don't understand how much energy and what kind of energy that takes. It would really help me if I could understand more but I'm not a medical expert and I don't have the energy to become one.