Tuesday, May 25, 2010

More chemo tomorrow.

The crap news I got last week was from the 'new' oncologist (Dr. Rose) and I guess it's right on. So with my Dr appointment yesterday I didn't get some good news to the contrary. Still peritoneal carcinomatosis- typical survival of 2 years- one of which I've already used. The delay in diagnosis being that there are 2 types of this cancer and they can't be distinguished under a microscope. One is slow growing, can be fought back and 'lived with' for years. The other, aggressive, hard to treat and kills you without blinking. That's the one I have. They could only diagnose it as such because they've actually LOOKED in my abdomen on 3 different occasions and it's worse- even with chemo (IV and IP). Rare, rare, rare. Lucky me.

I talked to my regular oncologist and she's putting me on FOLFIRI with Avastin and possibly AMG706 if I can get in on the clinical study being done at Johns Hopkins. She said she'd contact them to see if it's possible to do here or if she needs to send me- I'll go there for the treatment.

In the meantime, I will invest in the Essiac tea people have talked about and monitor my pH levels and TRY to eat better and drink LOTS more water.

I'm still waiting on the test results from the Kras tests... to find out if there is a mutation or not so it can possibly be treated with other drugs.

I am desperately trying to find my sense of humor, my positivity and strength to not only get through this, but to beat this. I have not yet convinced myself that I CAN win. The only thought in my head besides the occasional one liner is that "You've got one year to do all the things you wanted to do. Get to it."
I can't help but WANT to whine and say "Why me?" Haven't I DONE the work already? Haven't I paid my dues? Why do I have to do this again just to live?

Plus, I can't help but think that I'm going to do 6 months of chemo for 6 months of life after that.

I don't know how to get out of this funk now. Not when it feels like I'm stuck inside an hourglass while the sand is pouring all over me. The second I 'forget' about my situation- I get yanked back to reality. I can't escape into fun times with my girls because my thought is "Enjoy this while you can, you're gonna die in a year."
How do you NOT get sucked into that black hole? And if you DO get sucked into it, how do you get out when reality isn't just smacking you in the face- it's busting you in the mouth and taking kidney shots?


  1. Have you called Dr. Sugarbaker? If you call, you will get Ilse, his wife. The number is 202-877-3908. He is #1 in this field. You can also try Dr. Sardi in Baltimore or the doctors down in TX. They are the experts. You need an expert.
    I am going to DC tomorrow to learn about clinical trials at Georgetown. They have a few going right now.

  2. I don't know how you don't get sucked into the black hole. I guess you just don't. And I bet there are days you'll be knee-deep in it and days you'll be sky high.

  3. I agree with bserbu--Sugarbaker, Sardi, or M.D. Anderson. My doctor at MD Anderson is Keith Fournier, (713) 745-8101. You need to try one of the national experts.

    What have you got to lose? Do it, Rachel.

    Thinking of you...


  4. If you decide to visit the above experts and need a place to crash and some good food...let me know. I live in Southern MD and work in DC.


  5. Rachel, not to be creepy stalker person or anything, but I wanted to let you know I am praying for you. I think I found your blog through the Baby Center Dec. Baby club or whatever it was called.

    I haven't visited your blog in several months and just read your most recent post. That is crap news, you are right. I think you are so beautiful; my mom was diagnosed with ovarian cancer right after you, so reading your blog helped me understand what my mom was possibly feeling. Let's face it, sometimes it is easier to talk to strangers than your family about such crappy topics.

    I live in the DC area (northern VA) so if you need anything, let me know. kmthud [at] aol [dot] com

    I second that essiac (sp?) tea, lots of water, and healing music. Drop me a note with your address if you want and I will send you a copy of a cd with some healing music that my mom and two of my friends listened to as they fought (and WON!) the battle.

    Katie M.