The nose tube cannot come off yet. It drains the stomach, filling with brown muck a container near his bed. The tube gives him a weak nasal voice that comes out in brief sentences interspersed with sighs. He seems to have retained his deep voice but I suppose we have to wait after he tubes come off. The surgery can sometimes induce palsy of the vocal chords but I know they had brought in a neck specialist to remove the lymph nodes there, a man with a light hand and a swift scalpel who would be careful not to damage the vocal chords.
Jonas was upset this morning from trying to get fluids out of his lungs. Try sleeping when you want to cough out the mucus but coughing is too painful. He keeps doing his exercises and breathing deeply often brings out what makes his lungs sticky.
I sometimes have to catch myself before I ask Jonas: ' So, did you eat? ' or ' What did you eat this morning? ' . It seems to me the feeling of hunger is one of the most pressing and almost constant feeling there exists but, right now he feels no hunger at all and does not even seem thirsty anymore. It really amazes me that he is not going to swallow anything at least until Monday, the 3rd. However, if I ask: ' Are you not a little, tiny little bit hungry? ' , Jonas gives me this empty look and after a second, whispers back: ' No, I am not hungry. Stop mentioning food! '
When they saw the picture showing the radical nature of his surgery, friends were shocked. A few wondered what life was going to be like after: was he going to be able to eat normally? How could such a stomach function? The thing is that, when he faced the diagnosis of cancer of the oesophagus, the only thing that mattered was to get rid of that tumor.
There are not a thousands ways to survive it and even if there were, there is no time. Time matters a lot. That tumor was not going to retract itself from eating a lot of greens and thinking good thoughts as a few acquaintances kindly suggested Jonas start doing in order to heal. So, although a second doctor opinion was sought, Jonas basically went ahead with the suggested treatment, which involved chemotherapy and then, radical removal of most the gullet and almost half the stomach.
I think, but I might be mistaken, that he asked questions but, not a lot of energy was put in questioning the surgery and its effects. It might not be the wisest approach but, it was a decision made under a terrible sense of urgency. That is why, as it is, I do not really know exactly what is going to happen with that stomach. I am not sure Jonas himself really knows. We know he will have to eat smaller meals, snacks instead of full plates. We know the reconfigured digestive tract will not process the food very well at first and for many months. Jonas will probably experience what doctors call ' dumping ' , the food just passing through the tube and out. The remaining stomach has to relearn to process the food and it takes time. Jonas will not be able to eat everything he wants or the portions he wants.
When I said to strangers he has/had cancer and is on chemo, they would sometimes say: ' Chemo is bad! It is toxic! ' Even though I believe in the potency of herbs and I actually believe spiritual healing can happen, it made me upset to hear comments like that. Granted, chemo is highly toxic: I could not drink from the same bottle as him, had to wash my clothes separately because of the chemicals in them and the top of his head smelled of CLR. But chemo also reduced his tumor until it shrunk to 1/8th of its original size. Chemo allowed the surgery to take place. A surgery without which Jonas could not continue to enjoy life.
I will post pictures tomorrow. Family has started to arrive from the Boston-area and more will come over the weekend. And then, friends will be able to come as well. Jonas smiles when I tell him of the messages he receives from you and he is extremely touched by the support he is receiving.
I read recently that one of the reasons that gastic bypass surgery works is that the section of the stomach producing the appetite inducing hormone ghrelin is removed. I wonder if this is the case with JP also. Thank you again for the updates. Hope the family visits provide additional positive energy.
Life-and-death decisions are very personal. I'm sorry you had to endure criticism (including well-intentioned helpfulness) of something so intimate.
You guys will figure out what you need to do. For now - breathing seems to be right up there.
Breathe on!
It's easy for people to say "Chemo's bad! Try herbs instead!" But when in the situation, and seeing how things were going, I believe such measures were necessary. And also, as Rose said, it's personal, and one goes with the choice that feels the most right. As Martine spoke of her father, the body has a remarkable ability to recuperate and adapt to new situations. I know Jonas will get through this.