Tuesday 9-26-2006

I took the morning pretty easy and was just trying to hydrate and hang out. It is pretty important for me to stay hydrated on the days I get Cisplatin if I want to maintain normal kidney function after all this. In the afternoon we made our way to the infusion and again I got set-up in the lounge. Sabrina, the German woman from the day before, was there with her daughter and we started chatting it up. It was really wonderful. She was pretty funny and just full of life. It was really cool to hear that she has been able to continue to travel while on chemo. She just has Dr. Isacoff write down what she needs and you can get this stuff in almost any developed country. Sabrina keeps an apartment in Berlin and had just spent a month over there in August. She did say though that because you are a little down on your chemo weeks (she gets it every other week), you really need to spend like 6 weeks there to do what you might normally do in 4. Seems like a pretty good excuse to extend your stay. This was really encouraging because Eva and I were hoping to head over to Switzerland this December to spend time with her family.

After a couple exchanges in German between Sabrina and her daughter, Eva mentioned that she could understand them and it was over. I just sort of sat there and enjoyed the flurry of excitement as the women got to know each other in German. I think I caught a couple words here and there and I really enjoy hearing Eva speak other languages. As the Deutsch-fest continued, another woman joined us in the lounge. I cannot imagine what she was thinking as she sat down with us. I told her that I did not understand either and so we started talking a bit. The three patients relayed various parts of our stories which revealed that both women had gone through pretty bad experiences at City of Hope (or, as Sabrina refers to it, City of Despair). Basically, they said that they both felt like pieces of meat and that they both felt it was just an institution to try to use your body to get some scientific information out of you that may be useful to someone else down the road. Sabrina said she never left there without crying. She was actually in a clinical trial there for quite some time before kind of realizing that there were other options and she eventually found her way into Dr. Isacoff's office. Both women have outlived the prognoses given at City of Hope and look to be doing very well. Again and again, I feel very lucky to have gotten into Dr. Isacoff's office from the beginning.

I got my hydration bag, the Cisplatin, and the Erbitux and really had a fun time during the infusion. I think we had as much fun as anybody in our situations could have. It is still a little trippy thinking about how toxic the stuff that they are dripping right into our veins is. Quite the paradox how this medicine gives life by destroying it.

I kept it mellow in the evening and just tried to hydrate, eat, and relax while Eva continued wreaking havoc on elves or whatnot. I have done well with the weight and have been pretty stable around 164 in the mornings and the high 160's at night - pretty much back to my normal body weight. This difference is that most of the weight I lost was muscle mass and most of the weight I put back on has been fat. I have a little belly going on which is a little hard for me to get used to. I bend over and have this extra stuff there. It is especially trippy because the left side of my belly still has no feeling and that just sort of makes the whole thing feel even bigger (like you cheek with novacane). Eva is very supportive, says she still finds me attractive, and even mentioned she kind of likes the little extra to hold onto. I get over it pretty quickly and just feel lucky that my body is still working and that I can put on weight. My eating is light on infusion days but over the weekend I realized that I have a new sympathy for overweight people. As I have been trying to gain weight, I have tried to eat a lot and often as well as upping the calorie density. As a result, my stomach has expanded quite a bit, I get hungrier more often, and it takes much more to fill me up. I can totally see how this cycle could just perpetuate itself until your weight was out of control. This is not even taking into account all the physcological issues involved with being fat in our society. Anyways, I feel their pain, especially after hydrating myself up to 173. I felt like a fat slob sitting on the couch but I guess that is how it is going to be on Cisplatin days. It should be a fun night tonight. Maybe I can break last week's record on bathroom trips.

-TN