Monday, February 12, 2007

Breathing is important!


Although I didn't have much in the way of typical side effects from radiation and chemo, I did get some asthma that started to build last week and continued to get worse over the weekend. I suspect that one or more of the treatments is causing it. We decided today to hold on radiation this week and just continue with chemo to see if we can isolate what might be triggering asthma.


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We went to Pacific Grove for the weekend and I felt better as soon as we arrived. My asthma had become progressively worse by Friday and I raised my inhaler levels to maximum. I think there is a lot of tree pollen in the air that I'm allergic to but I never had a reaction this strong. When I drove near the water, my chest was less tight.


We are converting our garage into a painting/photograpy studio. It's about 500 square feet of open space. It's coming along well. On Sunday, we did a lot of rushing around and drove back to San Jose to see " A Long Day's Journey into Night". Sharon and I had dinner with my brother and sister in law, Joyce and Ed. By the end of dinner I couldn't really talk without coughing. I had to sleep in a chair on Sunday night in order to control the coughing.


I went to have my blood drawn and tested Monday morning at Stanford and then went to the fusion center to talk about the asthma and the relationship with treatments. The nurse started my fluids, which are just a saline solution, and we talked about my situation. She called my radiation oncologist and he said, as he did the week before, that the asthma was not likely to be aggravated by radiation. He said it could be the chemo. She then called my oncologist and he said that it was unlikely to be chemo, but my be radiation. The nurse came back with permission to start chemo.


I refused to take any additional treatment until the two physicians met and discussed what to do. I was at the end of my self medication possibles. If, in fact, the treatments were aggravating my asthma, a little more treatment could mean a trip to the emergency room and a lot of complications. The nurse got back on the phone and the doctors talked. They decided on a recommendation and sent their surrogates to talk with me. They recommended that we drop the radiation this week. We would have taken a week off anyway during the next week or two and, therefore, would not be off schedule. If it was the radiation, I should see some improvement in my breathing by the end of the week. If the chemo was the cause, we might try a lower dose or different medicine. It was a simple and elegant solution decided in 5 minutes. I'm not getting paid for it, but I'm still facilitating my own treatment and recovery every day. In my whole career, I've never seen a system so broken. Every clinic and doctor is a silo with discreet agendas, concerns, points of view, and defences. No one is looking at the my total picture and advocating to get things right. The doctors are brilliant. There is no coherent system from the patient/customer point of view. I can't imagine how much time, money and health is wasted as a result.


I went ahead with chemo infusion today. It's a long process. I was in the chair from 10:00 am to 6:30 pm. In order to compensate for the nauseating effects of Cisplatin, they infused to anti nausea drugs first. One is a form of bedroll and the other is a form of cortisone. Both last about 24 hours in my system. They are both good for allergy related asthma and I improved immediately. I also had a hard time sleeping past 4 am because the cortisone gives me a lot of energy.


When the cortizon and benedryll wear off, we will see what is left of the asthma. I should also have more chemo drugs in my system because this is a slow build process week after week. I may suffer some side effects.

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