Sunday, June 20 2010.
We are back in Fresno from our cruise. I must admit that it was not entirely successful in distracting me from thinking about my condition. I think the tumor is already growing at the surgical site, only 2 1/2 weeks since it was removed.
I am busy getting material together for Seattle.
Tomorrow, I will visit Dr Teitelbaum and Dr Tashjian to get copies of my records. I will also visit Dr Flam and have a 2 hour appointment with Dr. Mahdu John, who will be my radiation oncologist in Fresno. I will try to find out about the off label use of Beta Interferon and whether my insurance will cover it.
I have a dentist appointment for a tooth cleaning and to get a prescription toothpaste to preserve my teeth during the radiation.
Tuesday June 22, 2010.
Yesterday was spent getting ready for the trip to Seattle. I have everything needed but quite disorganized. I will try to get it organized today.
Radiation will be no fun. It is likely to last 7 weeks. They make a mask which looks like a Fencer’s mask to hold you still. I hope it does not make me claustrophobic.
The most likely problems are skin burn, dry mouth from loss of parotid and submandibular gland function, loss of sense of taste, difficulty swallowing and hoarseness. The issue of damage to the mandible is reduced by their modern devices. There is also general malaise, fatigue and loss of appetite.
I have arranged with Kaiser to work when I can.
Treatment planning takes a week so I will not start treatment until July 6, exactly two months from the date I discovered the initial mass.
Friday, June 25, 2010.
We flew to Seattle on Tuesday evening and arrived at our lodging just before midnight. We stayed at a place called SCCA house. This is a residence which has been developed for cancer patients and many of the residents stayed for a fair length of time during treatment. The setup was very nice. Although rather Spartan, we had a nice room with queen bed, a separate area for a caregiver if needed, microwave, smaller for greater, flatscreen TV dishes so that we could prepare food if needed. The cost was very reasonable at $79 per night without any hotel tax being charged.
Wednesday was a very busy day. First appointment was with Dr. Nghiem. I was first examined by a visiting physician from Japan. Then Dr. Nghiem came in. He gave me a complete examination. We had a long discussion about the options. He felt that there was no recurrence of tumor mass in the region of recent resection. Because of this, he felt that it would be inappropriate to start injections in the area where the tumor had been removed. We had a frank discussion about what my chances are with Judy present. Basically, radiation treatment is expected to control local disease at least 80% of cases. However there is a 50-50 chance of having distant disease. At that time, chemotherapy may be an option for palliation. Injection of beta interferon may be an option if a mass appears, but this treatment is too untested to inject this material at the original tumor section site.
We then went for our appointment with Dr. Parvathaneni. We take a shuttle to the University Hospital which is about two or 3 miles away. We first met with a resident named dr Ralph Ermoian who is from Fresno. He examined me. We had long discussions about radiation treatment. Then Dr. P. arrived and he gave me a thorough examination including palpation of my tonsils causing me to gag. He felt that my tonsils were not involved. He is going to have discussions with Dr. John to organize my radiation treatments in Fresno. It looks like he will recommend only six weeks of radiation treatment.
Following this, we returned to the lab at Dr. Nghiem's location where they draw nine tubes of blood. We then returned to SCCA house, picking up bagels on the way back to have a late lunch. I checked my e-mail and discover that they want me to return for one more blood sample. That takes less than an hour as I take the shuttle in both directions.
We decided it would be best returned to Fresno immediately. The SCCA house is very good about this. They allow us to check out and credit us for the three days we did not spend there. Delta Air Lines, however, is not so cooperative. They want more money for the return flight to Fresno then they would charge if I just booked a one-way flight to Fresno. Instead, we book a direct flight from Seattle to Fresno on Alaska airlines. We arrived back in Fresno late Wednesday.
I will work half a day on Thursday and half a day on Friday which will more than pay for the additional cost of the flight.
It looks like the timetable is now as follows:
Monday, June 28: I have an appointment for the setup for radiation treatment at 9 AM. I plan to work Monday afternoon.
Tuesday, June 29: I plan to work all day.
Wednesday, June 30: I have an appointment with Dr. Person for a complete teeth cleaning, and consultation regarding keeping my teeth healthy during radiation treatment. At 11 AM, I have an appointment for follow up with Dr. Flam.
Thursday, July 1: I plan to work all day.
Friday, July 2: I plan to work in the morning.
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