Sunday, July 18, 2010

The Good, The Bad and The Ugly

I talked to Dr. Cawley yesterday.

My CT scan showed that the three 'tumors' (basically clumps of mucous) amongst my small intestine have shrunk slightly since May when I started the new chemo. The layer of mucous hanging out on my liver and other places, no change. OK news.
But, she doesn't think I should wait until October to have the MOAS. She thinks I should have the surgery as soon as possible. Meaning the first of August- 4 week minimum wait after Avastin. That means... No Missouri, I probably won't be present for Iris' birthday party, no New York and probably no Italy.

Honestly, I'm pissed at the world. I didn't want to go on a rant, but if I'd have had the NECESSARY surgery 1 year ago... 4 months ago- I wouldn't be dealing with this SHIT right now. Instead of doing 2 minimal surgeries and not removing the cancer. I COULD have had ONE surgery that would remove all the cancer. If I'd have just known that the surgeries weren't INTENDED to remove ALL the cancer. They don't even do the HIPEC surgery @ OSUMC. The whole time I thought they would remove all the cancer and when they came back to say "There was too much cancer to remove." I thought- "I'm screwed." The fact was: They don't do the surgery I REALLY need(ed) there. That it would be more involved. A year older and much wiser having taken the idiot path. Possibly at the cost of my life. I would like to think my surgeon did all he could do. But that doesn't take away from the fact that he more than likely has heard of the HIPEC surgery with TOTAL debulking before the chemo wash- and he didn't say that's what I need, didn't suggest other surgeons, other procedures, didn't point me in the right direction. Just said I should look into clinical trials. And the Oncologist at OSUMC didn't say shit either.
They SHOULD have realized that they were in over their heads and passed me to someone better able to TREAT ME. I don't know if it's a pride thing or an ignorance thing... Doesn't matter. I'm feeling SCREWED. It's my LIFE and they SCREWED ME! I should get a damn refund and should punch SOMEONE in the friggin' face.
If I'd have gone directly to the Cleveland Clinic or another hospital that HAS the HIPEC, I wouldn't be in this position right now, maybe I wouldn't have had to do 15 fucking rounds of chemo and have had ineffective surgeries.

I'm pissed as hell... And I've held my tongue about it, thinking I didn't want to slam on amy doctors... But this last year of 'treatment' has been a waste because I didn't know any better and the surgeon that DID was irresponsible and not forthcoming with information. Fucking around with MY LIFE is not something I'm going to be quiet about.


  1. God that sucks about the surgeon and treatments you've been through, and the precious time they've wasted, and the trips you had planned-I'm so, so sorry. I wish there were more info out there for people to be able to find the best doctors and treatment plans for their type of cancer. They're all so different, and you don't really know that when you first start down the oncologist path, you just have to trust that they are doing the best for you- it's hard to find good info. Especially with yours-it's so rare (couldn't you have just won the damn lottery instead?). I can't even imagine how pissed and frustrated you are.

  2. Rachel,

    I have been the careprovider for a husband who had appendix cancer and although the MOAS was done right away, he lost his life to it last Feb. This is an incidious disease and I don't blame you for screaming for the delay in treatment!

    Even though you have to move forward and can't change this past year, I would still have to block the door and make former surgeons tell you why they didn't send you to sugeons who do this EVERY DAY! Did they feel the evidence wasn't in? NOT! Did they know the evidence and oppose it? Something. This doesn't fix your situation but I would have to leave swearing and swinging!

    Dan from our group posted your website and I would like to invite you to where our Bellybutton Club support group talks daily on Yahoo. We swear, shout, support, love, educate (not docs) and laugh...and all have what you have! We also have listed the surgeons who have done extensive surgeries in this field on our list. Another site is which is a fundraising/informational effort on appendix cancer. You need a very, very experienced surgeon to take a look at your case since you are right, there is lots of scar tissue. We would love to have you join us.

    Your strong, pissy spirit is a plus too!

    Lynda Meador-caregiver to former adenocarcinoid appendix cancer patient

  3. Hi Rachel. I'm a PMPbellybutton club member. I had MOAS/HIPEC last July in Pittsburgh at UPMC/Shadyside Hospital. Dr.James Pingpank did my surgery. He works with Dr.Bartlet who is on the list that Lynda Meador referred to. I can't imagine how you must feel (except your post seemed to really express it pretty well!!). I was lucky that in my mediocre town,(Warren, Ohio north of Youngstown)my doctor knew what I had immediately and told me that I'd need a specialized oncologist to help me. My local doctor did my initial surgery to remove my appendix,ovaries,and etc. There is another woman on PMPbellybuttons that lives near Canton, Ohio and had her MOAS at UPMC. If you have any questions, just email me. Sue Spain

  4. Rachel
    You are one feisty bitch when you want to be! Rachel you know that I pleaded to you to seek out a specialist as I feared that you were being jerked around.Two things that I learned from this damn disease...first is that you are accountable for your health and don't accept anyone feeding you a bunch of shit I don't care who the doctor is! I had no problem looking a very respected Oncologist in the eye and telling him that I did not think he was qualified to do my MOAS and that I was going to a specialist (Dr. Sardi ).
    Second...the easiest road is not always the best road! I went half way across the country to strange lands to get the best treatment for me. Very much to the dislike of my wife!!! (see rule one)
    Rachael who are you going to and when are you having MOAS? I am so sorry that I have not been able to follow you for awhile because of my MOAS on June 15th.
    The past is gone..what's done is done all we have is the present and now is the time to put all your energies towards getting better. Wishing you the very best!!!
    Mark...or Sheboygan Mark