Feeling pretty good

Dear All,

We are back in New York after a very nice and relaxing 8 days in Germany. The weather was awful, just as it always is at this time a year. We had couple of sunny days, but “damp, grey and cold” would be the most accurate description for most of the time. Didn’t matter though, the forest is right outside my mother’s house and we went out no matter what. Other than that we cooked, ate, and spent time with my mother and friends. It was great. I did fall asleep every afternoon and am overall rather fatigued, but I certainly still have a fine quality of life and am able to enjoy things. I almost got giddy sometimes, rather unusual for me!

Yesterday I decided to raid my German bank account and went clothes shopping. I lost so much weight that my pants are falling below my waste even when buttoned up! I went through the whole thing already last summer, but I keep on shrinking, so I had another excuse to restock my wardrobe!

And today I spent a busy day at the Spa! HA! I got all pampered up and am feeling very spoiled right now. I was hoping they might be able to get rid of those impressively dark rings around my eyes that I have been sporting for the past few weeks. That didn’t really work out, but other than that it was marvelous. I wish I could do that kind of thing every week! There should really be a “cancer pamper foundation” or something like that! I am convinced that things of this kind help with the overall healing process, even though healing doesn’t always mean “curing.”

And so do all of you, my wonderful friends and family. Your thoughts, time, food, and support is helping me tremendously. And so is my acupuncturist, super discount gym trainer and of course Lucinha, the star of the show. She is developing into quite the young lady. Some (aka my mother) might describe her as a boundary testing, strong headed, misbehaved teenager right now, but thoughts of that nature don’t seem to cross my mind :)!

Tomorrow is hospital day, and my chemo dose will probably increase. I am not too worried though, since I have been tolerating this drug well so far, at least as far as chemotherapy drugs are concerned.

All best and more soon,
Shani/Beatriz

and thats the man who said he is not a "dog person"

Game Plan

Dear All,

After 2 days spent in a mixture of sadness, endless hours one email, phone and hospital appointments, we decided on a game plan by thursday night. Before going on any experimental drugs, I am conservative this time and pursue the tested, standard chemo that is commonly recommended for brain metastases. None of the treatment options have great statistics, but maybe I get lucky this time and am part of the small pool of people who do respond. If that fails, there is a phase II trial open at Harvard Medical and I do qualify for it. The trial is testing a relatively new fancy class of drugs, (a second generation kinase inhibitor), that has so far shown promising results. “Small molecules,” is the lingo of the day, which essentially means a designer chemical that is also very toxic, but much more targeted towards the actual cancer cells compared to chemotherapy. The problem with any chemicals is that our brains aren’t very prone to let those in. The blood brain barrier tries to keep them out, which under normal circumstances is a good thing of course, but .. .

The current chemo is pill based, so no long hospital visits, and as an extra bonus I won’t loose my hair again. I am also back on steroids, a class of drugs I usually hate, but it helps with the pain and dizziness I started to experience and it also gives me back my appetite, which is great, since my doctors declared me as “mal nourished” by now and all my attempts of putting on weight have failed so far. (When I look in the mirror I feel like I wouldn’t even recognize my own body, if there wasn’t this head of mine stuck on top).

I took my first chemo pills yesterday, and so far so good. No major side effects so far, just the usual fatigue and headaches that I have been experiencing for months, (hm, years?). And occasional tommy grumble, but I think thats actually the steroids showing their nasty side, not the chemo.

Lucinha is still recovering from her spay surgery last week and a little miffed at the universe, since she isn’t allowed in the dog run right now. Other than that, she is just peachy and prancing her way through Manhattan.

We will be leaving to Germany for 10 days on thursday and I am very much looking forward to that. I also decided not to teach this quarter. Finally my voice of reason came through and told me that even if I could pull it off for a while, in the end it isn’t really fair to my students. The likely hood of me having to cancel meetings and not being able to give them the attention they deserve is just far too high. I am sad about it, I enjoyed the interactions with my last batch of graduate students a lot, but hey, one can’t force these things. And for my health, reducing the stress might actually be a smart idea from my end – for once.

No photo this time, I will the keep “rock star me” illusion going for a while (not to be replaced with “dark circled eyes, pale and sickly looking me,” that I seem to have transformed to very quickly over just the past six days).

I hope everyone is doing well, your ongoing support and emails mean a lot to me. And the food of course, but I believe that I have mentioned that once or twice before :). Tonight is Goan fish curry night, I can’t wait!

All best,
Shani/Beatriz