Friday, May 21, 2010

May 21, 2010

Thanks for checking in.
I got my first opinion yesterday from U of MD and they say chemo is the only route right now. The medical oncologist there suggests a protocol called modified DCF (which includes three drugs Docetaxel, Cisplatin, and Five-fluorouracil). I would need to go in on Wednesdays and Fridays every two weeks. The chemo may work well enough for some radiation to be added as an option as well . . . possibly later.
I am having a VERY hard time swallowing; the consensus seems to be a feeding tube which is easily removed (versus a stent, which would open the esophagus, but has a lot of other downsides like moving, etc.). Although the idea of a feeding tube does not sound exciting to me, I need to be well-nourished in order to take the chemo. It will also allow me to take my other medicines (which I've been unable to swallow).
The doctor with whom I talked who would do the feeding tube insertion has an opening on Tuesday of next week and his assumption is that if all goes well, I will be able to make my second opinion meeting at Johns Hopkins two days later (next Thursday) and then I'll have some big decisions to make . . . like starting a treatment plan. But at least I will be nourished.

So thanks for your thoughts and prayers . . . I need and appreciate them.
Love,
Bob

Friday, May 14, 2010

May 14, 2010

The lymph nodes in my neck are positive for adenocarcinoma. The surgeon at U of MD has sort written me off and suggested that I meet with my Medical Oncologist, which, of course, I did not have. He has scheduled an appointment with Dr. Naomi Horiba for May 20. I now have an appointment for a second opinion at Johns Hopkins (May 27) with the Medical Oncologist Dr. Rosalyn Juergens (who comes highly recommended from a poker buddy of many years -- she is treating his wife's lung cancer). I understand that Dr. Stephen Yang (Surgical Oncologist) is reviewing all my records and will be in touch with a second opinion from JH regarding surgery.

I am doing a lot of reading, have lost over 30 lbs. (while that is likely a good end result, try YOUR best NOT to accomplish it through cancer), am trying to eat a lot healthier and have attempted to change my body from acidic to alkaline, which is on advice from a Native American Medicine Chief with whom I met last week.

My main concerns right now are three-fold. First, I am not eating very much. It is difficult for me to swallow anything but liquids (although last night I did manage to do some broccoli, spaghetti and black beans) and I must do so in very small quantities at a time, chewing them endlessly (or so it seems). So, in some ways, I am feeling like I might be dehydrated and/or malnourished. I have been sipping Ensure and other protein items, eating a lot of blended soups, etc. I think I need to drink more water, which, for some reason, is not one of my favorite activities.
Second, I don't know who or what to believe. The amount of information I receive (and seek out) on a daily basis is immense and most kind souls seem to have the ONLY answer. I am reading Norman Cousin's Anatomy of an Illness, have downloaded and watched several really FUNNY movies and laughed a lot, have been affirming that "Every day, in every way, I am getting better and better and stronger and stronger," and, although somedays I don't feel a lot better, I continue to instruct my body to do so.
Third, if I am relegated to chemotherapy ONLY from the medical side of things (which is the recommendation from the first surgical oncologist at U of MD), I worry about what that will do to me. I have also been reading a book by Raymond Francis (called Never Be Sick Again) who purports that there is only ONE disease and two causes. The one disease is cell malfunction; the causes: toxicity or malnutrition. So therefore, he is opposed to chemotherapy which puts poisons in your body to kill the cancer (and a lot of good stuff too).
These seeming contradictions put me in a quandary about which efforts to "approve" and which to postpone or say "no" to or . . . Yikes!

Barbara and the boys (as well as extended family and friends) have been WONDERFUL. Very concerned and thoughtful . . . and so encouraging.

Please continue to keep me in your thoughts and prayers.

Bob