#19 Back to Basics

Sunday dusk and I’m just awake from a two hour nap. Having arose at 3:30 am, and unable to get back to sleep, I started my morning.

This week the itching and blood sugar levels are still bothersome. My cousin Nicole sent me a great lotion called Sarna, and Dr. Katie at the VA ordered me up some medicated body lotion, between the two it’s fairly bearable. I also found (at the pharmacy) these small two ounce jugs of fast-acting glucose called DEX 4 with fifteen grams of carbs per serving, very portable, and take about eight to ten minutes to work. At home I use Mango nectar usually mixed with soda water and try to eat balanced smaller meals throughout the day.

My eyes and skin have lightened up considerably, even though my latest blood tests show some pretty steep rises in all the wrong places.  I actually feel a bit better for longer periods of time.  Dr. Kubove at the Burzynski clinic called with what was to be my regime for the next few months.  It was a combo of weekly Herceptin infusions and Tarceva (Erlotinib) pills on a daily basis. We didn’t have the final prices on all this, not counting the $4,500 a month for case management, nor the cost of the three pills they already had me on, but it would be close to, if not more than $15,000 a month.  This is a figure that we couldn’t even begin to carry.

I had stopped taking the PB antineoplaston tablets a few day before this news to see the effect on my energy levels and it was dramatic.  I did not feel barely present most of the time and that had a really good effect on my overall attitude.

This week also had a switch in my Kaiser oncologist, to a Dr. Bruce Carson Clark and he really seems to be a caring, helpful, straight shooter.  Quite refreshing for Ha and I in our experience with Kaiser doctors generally speaking.  Dr. Clark thought Tarceva dangerous considering where my condition was at.  My gut instinct felt he was right.  With the side effects I had read about, if this stuff failed, this was not the way I wanted to live for even a month.  And after much discussion with my wife and mother we decided to drop the Burzynski methods entirely and go with what had been my basics from the beginning. We had also spoken with a Dr. Kunin in San Francisco who worked with vitamins and sounded interesting...we’ll see.  

I’m hoping the coming week will be smooth and low-key , with acupuncture, yoga (to which I’ve added some liver based Qi Gong), meditation, massage, mind-body work and rest.