Tuesday, July 20, 2010

Not done yet.

I spoke with Dr Chalikonda today. I think he's interested. He's done around 140 of the HIPECs. But again... a ball was dropped when I gave him my CT scans from Marietta Memorial the only scans on it was the first one I had... PRE DIAGNOSIS. Now I've had AT LEAST 5 effin' CT scans. 3 of them at Marietta Memorial. One in May of last year, one from May this year before I started FOLFIRI and one from LAST THURSDAY! The last two were not on the disc.
Did I mention that I forgot the disc at home and didn't realize it until we were an hour from home? I turned around to get them and got back to the 3 hour drive. Only to find out the disc was damn useless.
So, though he seems interested, he couldn't tell me anything like "Yes, I can treat you. We can do this, this and this." until he see some effin' scans.
What the Hell? Am I just destined to be an example of what not to do? One of those- 'If Only...' stories.
I THOUGHT Dr. Arnold WAS a specialist when he was treating me. I thought I was getting the HIPEC surgery. Hell- Doctor Goodman said plainly... "I've never heard of anyone doing that procedure." after I told him what Dr Arnold did.


Are the stars EVER going to line up for me? It's so hard to be proactive when you can't concentrate, your brain is fried, you feel like the whole world is on your shoulders and you're lost half the time. I wish I had a little birdie on my shoulder that had all the answers. "Raa, make sure all the scans are on the discs. Raa." "Raa, your surgeon sucks. Ra" "Raa...This guy is the one.. Raa." "Now gimme a damn cracker."
That's an idea.
At the PMP Bellybuttons Club page I was getting hounded by some lady who was basically calling me a liar when I told her what I'd been having done. (one reason I abandoned the site until recently.)

Anyway- it is VERY possible I will be coming out of the HIPEC surgery with a colostomy bag. Hmm, that's SUPER! Can't wait for THAT! What 34 year old woman wouldn't feel complete without a bag of poo hanging off her stomach? News just gets better and better. I'm certainly NOT putting down anyone who HAS one, but seriously- it can't be fun. That being said- choosing between death and a colostomy bag.. the choice is easy. Gimme the bag, thank you.
Dr. Chalikonda also said that the odds of getting all the tumor out after 3 surgeries aren't good. Thank you again Dr. Arnold. Oh, and that doing the Chemo infusion without removing the tumor... pointless. I don't think a chick with a simple 2 year degree in Mass Media from a community college should be cluing you in on that. Just saying.

I guess I will be the inspiration for others to do their homework. And in the meantime hope that my screwups haven't cost me years of my life.

Next for me. Dr. Sardi in Baltimore... MAKING SURE HE GETS ALL MY SCANS and all my records before I drive 5 hours to see him. I was told that he usually schedules surgeries 4 weeks out.
Of course- by now I've realized that i really don't have any questions for Dr. Sardi except for "Will you treat me?" and "when can you do it?"

Regrets, I've had a few.......


  1. I'm back again, Rachel! Bear with me.

    Don't let Dr. Chalikonda touch you yet.

    You may want to call the liason people of a few doctors from the phone numbers on the pmpawareness.org list. They will tell you what to put in a packet to them about your case ASAP.

    I would do Sugarbaker FIRST who is the most experienced (but may not take you due to your extensive other surgeries but at least give an opinion). You are young...he is compassionate... and may take the case and God knows, he would be top banana for such complications! Also add Bartlett, Loggie, Esquival (no laparoscopic from him though), and Mansfield to the Sardi list if you want a lengthy list to go from.

    Do NOT give up! This sucks, for sure, but now is the time to think through that chemo brain and gather, gather, gather...no one knows for sure until they see your situation. But girl, it is time to go outside the local surgeon box!

    So sorry someone was rude to you on Bellybuttons...never judge by one! These are great people and we "know" each other quite well by now esp those of us on for 2 1/2 yrs.

    You could also go on PMPPals which is a sister group to us. The owners don't like each other and there has been some bad blood but your job is to learn now and you can read there too. I just prefer talking on Bellybuttons rather then joining the other and being "assigned" a mentor...info still good though. Also appendix-cancer.com is a good site for 101 appendix cancer.

    Make sure you get several CD's of your most recent scans! Any OR reports, pathology reports, a history of your cancer letter...they will tell you. This way you do not have to travel yet. We did this to 4 surgeons...and thankfully, got the same treatment suggestions from all of them.

    Time to go to work and please ask us on BB Group if we can help in any way!


  2. Thanks Lynda

    I've been going outside the local surgeon box. I did contact Dr. Sugarbaker first... he wouldn't take me. Then I contacted Dr. Goodman, then Dr. Chalikonda. Now it's on to Dr. Sardi.
    Here's the thing... I've read a LOT about this cancer. And I've been to appendix-cancer.com.

    What you're suggesting is what I'm doing right now.

    I hadn't done it to this point because I THOUGHT that I was getting top-notch care. I realize now that I wasn't. I thought that since Dr. Arnold was head of the gastrointestinal oncology department that he would guide me if there was something more that I needed. I thought I was getting the HIPEC and that since they were telling me there was too much to remove, I thought that no one would do it.

    (note the "I thoughts"... sad)

    It took a lot of screwups and missteps on my part and being led by the nose, but I think I'm on the right track now. I'll be checking out the clubs. But honestly I don't tknow that I want to post much and be told all the stuff that I SHOULD HAVE done and how I screwed this up myself. I think I've been through the wringer enough.
    No one is beating me up over this more than me.