Today has been the worst day I've had in a very long time, and I'm including the day I got diagnosed in that list. I woke up to some serious bullshit at work that just pissed me off, and I stayed pissed all morning. At noon I heard back from Stanford, and Novartis hasn't finished their testing yet. So, no-go on the study for tomorrow. Again. And they're sure they'll have it ready by Friday. And they were really apologetic and blah blah blah blah. So I called Wexler, and she said that in her opinion it's worth waiting one last week - she thinks there's zero risk of it getting worse in the next week and there are possible positives can make it worth the wait. Me being in the study is of no benefit to her.
She did point out that the average time to enter a study like this is 90 days, and we're still at about 60. She also said that since my lymph nodes came back clean and the tumor has stopped after the first major growth spurt, that there was no reason to believe it will metastasize in the next few weeks, and that it is normal for people to be moved back out of the trial pipeline if any of their markers come back as risky, and so far none of mine have.
I talked to Bob and he was really angry. And I've been talking to Leasha, and Simone, and Eric is helping out with some research he can access that the rest of us mere mortals cannot. Long story short, I decided to give them one more week, but that's really absolutely my final offer. If I don't have chemo dripping into my chest by noon on Monday I'm pretty sure Bob's going to beat somebody up, and I'm pretty sure I will have lost my mind entirely.
That is the hardest thing in all of this, trying to figure out which advice to take, which to discard, how hard to push myself. On the one hand I'm supposed to try to be as normal as possible but plan to skip things if I don't feel up to them. On the other hand I'm supposed to "take care of myself" by shunning anything that may be physically difficult or emotionally trying. I'm supposed to take all these ridiculous supplements but not change my eating habits in any significant way. I'm supposed to push hard and try to exercise no matter how gross or sick I feel, but I'm not supposed to push myself too hard because healing will be harder.
So I am angry. Still angry about the work bullshit. Angry about this. Feeling manipulated and frustrated and like there are no good choices. I am not emotionally capable of doing this roller coaster of prep and then nothing again. It feels pretty unreal right now - like maybe I'm not really sick (still don't feel sick, still don't look sick) and maybe if we just delay it every week forever I'll never have to actually deal with the disease. Intellectually, of course that's stupid. Emotionally, I'm so used to the up and down and not moving to the next level now that it doesn't feel like anything else is possible.
She did point out that the average time to enter a study like this is 90 days, and we're still at about 60. She also said that since my lymph nodes came back clean and the tumor has stopped after the first major growth spurt, that there was no reason to believe it will metastasize in the next few weeks, and that it is normal for people to be moved back out of the trial pipeline if any of their markers come back as risky, and so far none of mine have.
I talked to Bob and he was really angry. And I've been talking to Leasha, and Simone, and Eric is helping out with some research he can access that the rest of us mere mortals cannot. Long story short, I decided to give them one more week, but that's really absolutely my final offer. If I don't have chemo dripping into my chest by noon on Monday I'm pretty sure Bob's going to beat somebody up, and I'm pretty sure I will have lost my mind entirely.
That is the hardest thing in all of this, trying to figure out which advice to take, which to discard, how hard to push myself. On the one hand I'm supposed to try to be as normal as possible but plan to skip things if I don't feel up to them. On the other hand I'm supposed to "take care of myself" by shunning anything that may be physically difficult or emotionally trying. I'm supposed to take all these ridiculous supplements but not change my eating habits in any significant way. I'm supposed to push hard and try to exercise no matter how gross or sick I feel, but I'm not supposed to push myself too hard because healing will be harder.
So I am angry. Still angry about the work bullshit. Angry about this. Feeling manipulated and frustrated and like there are no good choices. I am not emotionally capable of doing this roller coaster of prep and then nothing again. It feels pretty unreal right now - like maybe I'm not really sick (still don't feel sick, still don't look sick) and maybe if we just delay it every week forever I'll never have to actually deal with the disease. Intellectually, of course that's stupid. Emotionally, I'm so used to the up and down and not moving to the next level now that it doesn't feel like anything else is possible.
Ice cream is absolutely a balanced dinner. Of course it magically shrinks pants, but that's another story.
ReplyDeleteTomorrow will be better. Because I said so.
We are beginning a prayer vigil here in Uganda. The people have agreed to pray for you around the clock, day after day. I know a God of miracles. Your husband is evidence of only one of those miracles. May God give you peace, comfort, and healing in these confusing and frightening days. Hugs and love coming your way!
ReplyDelete