Wednesday at Stanford

Yesterday I got to Stanford at 10 for my blood draw, and didn't leave until 7:30. Long Day.

My doctors (Advani and Lee) agreed that my lymph node growth had accelerated in the last two weeks, which obviously is not a good sign. In their opinions too, this showed the GeMox was not effective. Unfortunately my platelets were still low yesterday (20k), so they couldn't even start me on anything else. We discussed clinical trials, but I'm ineligible for all the applicable ones for various reasons (recurrence too quickly, blood counts too low, etc.)

They decided they'd like me to take PEP-C chemo, a low-dose, every-other-day, oral regimen and see if this will at least hold things in check. But even this chemo requires my platelets be at least 50k. They also want me to have more Rituxan (once every 3 weeks I think). Alas, my hematocrit was only 25 yesterday, so I needed two units of blood and the Rituxan. Doing both of these takes 11 or 12 hours, so it wasn't feasible to schedule them both for yesterday. I had the blood transfusions yesterday afternoon/evening, and will have the Rituxan on Friday. I'll also have another blood test Friday, and if my platelets are greater than 50k, will start the oral chemo. If not, I'll be back Monday (and Wed for my Dr appt) when I'll be tested again.

Since I'm the first one to feel the lymph nodes, I wasn't "surprised" by the bad news - and Dr Advani again said it was getting "dicey" and I *could* get into a dire situation at any time. My advanced healthcare directive has been in place for some time, and it does say I don't want them attempting crazy things to keep me alive a bit longer with zero quality of life.

On more happy news, at least I'm feeling pretty decent today - so I'll try to get out for a walk when it's a bit warmer outside. I hope my leg won't start to hurt too much so I can walk at least a couple of miles without stopping.

Yesterday afternoon at the ITA, I noticed a guy who looked just like Steve Kirsch (Mouse Systems, Frame Technology, Infoseek founder). I had Cathy check the "big board" in the hall outside and sure enough it was him. As I had started at ROLM Corp in early 1982, just a few months after he left the same department, I'd heard many stories about him but had never met him. So I introduced myself, and we chatted for a while. He asked me many detailed questions about my cancer and treatments - I didn't get to ask him many about his (Waldenstrom's macroglobulinemia (WM) ), but he goes into a lot of data on his website. As his is an extremely rare blood cancer, not much is spent on researching the disease or the best treatments - but he's changing that with his fortune.

Our friends the Butensky/Hoods are taking Laurel with them to Tahoe for the long weekend so she can try Snowboarding for the first time (she's never been skiing either) Even though Cathy and (especially) I aren't that into ultra-cold activities, we did ask the girls multiple times if they wanted us to take them skiing or snowboarding. Ali was always very against it though - some of her dance friends had broken limbs skiing just before big dance shows and had to drop out. I hear Ali is going to go skiing at some point with her UCLA friends.

So it'll just be Cathy and I this long weekend; hopefully I feel well enough to do some things (as I do today), and not have to lie down all weekend.