We Go on a Cruise to Alaska

June 13,2010

We leave on a long-planned cruise to Alaska, taking our nine tear old granddaughter Eva. This cruise is a great distraction, but it is difficult to stop obsessing about my condition. I often become tearful. I still am not sleeping well. Judy is very supportive but she is also very upset by all this.

Tuesday, June 15 2010

We dock in Ketchikan, Alaska.

I get up early because I will have cell service. I have a brief breakfast,go to the internet café, where there is good wireless signal, open my email and the phone rings. It is Dawson, the scheduler for Dr Ngheim. We have a long discussion during which time he gets Dr Ngheim conferenced in from Washington DC.

The bottom line is that I will need to go to Seattle Tuesday to see both Dr N and Dr P Wednesday. In addition, I will need to stay until Saturday so Judy can be shown how to inject the Beta Interferon. I will need to get my insurance to approve it as it is an off-label use for the drug. The cost is $3000, but I will pay if necessary.

I call Dr Teitelbaum’s office and tell them I need to cancel the surgery and to get copies of my records for me to pick up Monday.

Needless to say they call me back later in the afternoon to schedule the surgery.

I call Dr Flam and he has reservations about bypassing the surgery. Dr Teitelbaum also has such reservations when he returns my call later in the day. I promise both of them I will show them the literature I have from Dr Ngheim to support this decision.

I also arrange to pick up all biopsy reports from Dr Tashjian’s office.

Thursday June 17, 2010.

I am in better spirits after a good day in Juneau. My granddaughter Eva is such a delight to be with that I am able to get my mind off this. We watch her favorite movie including deleted scenes, and she has seen it so often she quotes the dialog with the actors. Ironically, the movie is The Titanic.

I have a large to do list for when I get home. I will see both Dr Ngheim and Dr Parvathaneni Wednesday morning and have arranged flights leaving Fresno late Tuesday arriving in Seattle Tuesday at 10:45 PM. Ironically, the flight back from the cruise originates in Seattle, nut Dr Nghiem can not see me until Wednesday and we decide we need to get Eva back to Fresno.

I have booked a room at SCCA House departing Saturday. I may receive injections of Beta Interferon into the site of the excised tumor mass as there is evidence this may control the disease in immune responsive patients.

In the absence of a tumor mass to inject, there is no precedent for this, but there are certainly tumor cells in the area. In fact, I may be feeling another mass in the area of tumor resection. Is this good news? They will have something to inject. Or bad news? Rapid tumor growth.