Friday, November 5, 2010

Long Day

So I am back from Baltimore, the 5 hour drive sucks royally.
I met with Dr. Sardi first- nothing much to say except for it doesn't look great. Prognosis is worse after debulking surgery if they don't remove all the visible cancer. And they didn't. there was a lot of cancer there and it was in places they just couldn't get to or get it off. At least he took out what he could. Sucky, right? It gets better. Just wait.
Right after meeting with Dr. Sardi, I went right over to Dr. Ledakis. Get used to that name because he's a surgical oncologist... and my new favorite person. He's a huge guy- I can't wait to get a "My Oncologist can beat up your Oncologist" because it would actually be true.
Dr. Ledakis was part of my team when I had the HIPEC (that wasn't HIPEC). He took the biopsies of my cncer and tested it against different chemotherapies to see what would be effective. There are actually a couple of routes to try: The typical colon cancer treatments and a treatment against a KRAS factor... don't ask me what the hell that is, I just know that if you don't have a KRAS mutation- the cancer is vulnerable to another chemical.
Guess what? My cancer is resistant to all of them. And I have a KRAS mutation. All bad.
What does that mean? There is nothing that will definitively kick this bitch. So I begin trial and error. Ledakis said we can do Avastin treatments which may hold off the growth... maybe- hell, we don't know.
Prognosis. Few, very few make it to 5 years. But less than 5 years is better than 1.
So I am really going to have to buckle down and just do every urban legend cure out there. It's hard to transform your household into the cancer fighting kitchen. ugh.

I am going to get a hold of the doctor in Dallas doing experimental stuff with cancer vaccines and such. Plus, I am going to look into whatever clinical trials I can.
Ledakis said that if after everything- nothing is working- we may go to an old school colon cancer treatment that he repeated MANY times was very toxic. That's a next-to-last resort.
I did ask the question I put here a while back, about having signet ring cell adenocarcinoma and since that is commonly an ovarian cancer too- that maybe try an ovarian cancer regimen against it (even though mine is colon/appendix). I asked an asshole doc at OSUMC about it and he just repeadedly said "But you don't have ovarian cancer- you have colon cancer." DUH- I KNOW, YOU JERK!!! I tried to explain to him I knew that and was just wondering if that had ever been tried. He just looked at me and treated me like I was an idiot.
Dr. Ledakis 'got' what I was asking and he said "We can try whatever you want- nothing is crazy."
I like him already.

So, mostly a shit day. I wanted some good news- but I think I knew what was coming.
CT scans are the next step and a lot of calling around before starting the Avastin, if that is actually what I do.

On a beautiful note- Dr. Ledakis commented on my previous surgeries at OSUMC... saying basically that he didn't understand why any doctor would do that surgery without debulking first. And to do it twice and talk about a possible third one? Ridiculous. I think Dr. Sardi got in touch with Dr. Arnold and hopefully gave him an earful. Maybe Dr. Arnold will refrain from doing that surgery on others and start sending them to get the surgery they SHOULD have.
Kisses, Dr. Arnold. I really hope you read this and educate yourself.

I'm in decent spirits. I would rather live forever... but I'm not dying tomorrow. So yay I guess.
I can't die too soon- I still have to find my DD214 and get it on file at the courthouse for a military rites funeral.
Getting ready to die is a pain in the ass... I'd just rather not do it at all. Problem solved.


  1. I'm with you in spirit, Rachel. I already prayed my rosary for the night but I'll name you in my rosary tomorrow. You can also request a copy of your DD214 online.

  2. Hey Rach...sorry about all the bad news..I mean first that long trip there then to hear all that? At least your Dad was with you.
    Hang in there girl. I mean we all face death eventually......I just don't want you to go.....5 years or 50 years from now. Love ya girl and anything I can do you have my number. I'll continue to pray for you and your family and we STILL have a lunch date at Olive garden!

  3. Sorry you received such bad news today, wish I had the right words but I don't - this all sucks. Am keeping you in my prayers Rachael, don't give up. You have a wonderful family and 2 little girls who still need you.....:-) Hugs

  4. Ohh nuts, I keep praying for that miracle moment when someone says, "this will be THE cure". I could kick Dr. ARnold myself, and I'm sure there would be a long line behind me! The Dr. in Texas has cutting edge stuff going on, so maybe we'll keep you around for several more years! I'm so glad you are a spunky fighter like your grandma! Hang in there, some options out there~ I love you bunches,,,,,Mom

  5. Well, that's some crap news. I'm sad now that I've read it, but I'm glad that you are comfortable sharing your story. The more people you spread it out to, the more support we can give you and take up an army against the cancer.

  6. Damn. Damndamndamndamndamndamn. I'm not at all a fan of this news. I'm really praying and hoping that there is SOME kind of miracle/discovery/surprise waiting around the corner for you.


  7. Good girl...NEVER give up...we are all praying and fighting right along side you!!! We love you! Cuz Carla XOXO

  8. I am sorry the news wasn't better. I keep praying for you, and love your fighting spirit!

  9. Health care is the priority in the United States and that's making people aware of the great changes that have to do to get ahead of the situation in which millions of people are suffering in health care.

    Kim Kardashian

  10. That sucks and that first doctor should have his license taken away. I can't imagine how difficult it is to stay positive, but you are doing a fabulous job at it!!!!

  11. There is a researcher on the MM blog site who does a lot of reading about herbs and spices that help - go to "Margaret's Corner" - and esp read about curcumin. I wish you well in your search for solutions and if I hear or see anything that might be helpful, I will pass it on.