9toes's blog

I went to get a CT scan this past Saturday. Unfortunately, there was a hiccup in their computer system and the order wasn’t there. So, I sat around the waiting room for two hours while they kept trying to find it.  Once we all gave up on that, I went to mom’s to hang out, and ended up spending the night.

In the meantime, I had been having discomfort and bloating of the abdomen. Well, on Sunday it finally go to me and we went to the ER. They took a CT and decided that there was no blockage. However there was fluid buildup. Monday afternoon they put a catheter in my side and drained off 4.2 liters of fluid, and I feel MUCH better.

While we were there, M.D. Anderson got in touch with me to fill in some blanks and the referral is now on it’s way to Dr. Mansfield. We should know more around Tuesday.

I was already impressed with the new oncologist. Last night they raised the bar a little. I got a customer satisfaction call from them. Have you ever heard of such a thing?

So, we went another oncologist for a second opinion yesterday and everyone was very impressed. So much so that I am going to cancel all my other appointments with the oncologist I had been seeing, and stick with this guy.

He thinks that I need to go to M.D. Anderson and talk to one of their appendix cancer specialists. So, his office is going to get with their’s to set an appointment. In the meantime, he also wants another CT scan of my gut to check the progress of thing in there.

And the diagnosis is Mucinous Adenocarcinoma. Right now it is still registering with me. So, I’m still wrapping my head around the whole thing.

I have an appointment with another oncologist Thuesday for a second opinion on how to treat this.

Today is my first day back to the office since the last operation. So far no problems ,but it is early. Tomorrow I have an appointment with the oncologist to see where he thinks we need to go from here. Next week I go see another oncologist to get a second opinion. Then the following week there’s a follow up appointment with the surgeon to see how things are going with the two surgeries.

(no, the whirlwind hasn’t stopped yet.)

I got this from the office of the doctor that performed the colonoscopy last week:

Biopsies taken were from the stomach and were completely benign. They showed some changes consistent with medication or acid induced inflammation which was in healing stages and did not have bacteria present, specifically helicobactor pylori.

So, that area was clean. Which is great news. At least I think so.

I’m still sore from Monday’s surgery. However, I am somewhat mobile. On a good note, the pathology is in from the tissue taken during last weeks colonoscopy, and it’s clean. A sthe nurse put it to me they were “completely benign”. We are still waitning on the results from this weeks tissue samples.

My mom and grandma have been sending out updates to family. Here are the latest from each of them.

Mom’s:
The surgery went ok, but the news wasn’t as good as we’d hoped. There is more cancer in the omentum and peritoneum  layers, but nothing that can be removed. (those layers line the intestinal and abdominal walls.) The cancer is not concentrated anywhere, just sort of floating in a mucus layer all around the abdomen. Kind of hard to understand. waiting on pathology to find if the appendix was the origin or not, although the surgeon seems to believe it was. before starting chemo, we’ll probably ask for a second opinion to be sure we’re treating the right cancer. Treatment has to match the cancer. It’s pretty standard to get another opinion. Not sue if we’d go to M.D. Anderson or not. There are some other very good centers in town probably much easier to deal with. We’ll have to see what the oncologist says next week. by then, they should have all the info from yesterday.They released him right after recovery, so he’s here now. probably go to Rosanne’s tomorrow. Back to work when he’s up to it. The incisions are small, but he’s still a little slow moving.

Grandma’s:
Hi everyone,
The news has not been good.  Jamie has surgery yesterday, mainly for the appendix and exploring look for the cancer.  All the Dr’s. feel the appendix was were it started but will have to wait for the biopsy’s to come back on that.  He has cancer that has spread all through the lower abdomen.  The Dr said it was like an oil spill, there was nothing that he could go in and grab and say he has it all.
Lots of big words, its in the pertoneum and the omentum, It’s like a mucus in there spreading around. The test results will be back the end of the week, them we are back to the oncologist and see what he wants to due to cure this cancer.  We will then consult with another Dr for a second opinion.
Knowing it has spread it quite hard to accept, we can only pray to the lord for what he thinks is best.
Please keep on praying for him and his recovery.
Much of what I am hearing seems to e concsistant with something I found on the MD Anderson website: http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/appendix-cancer/index.html

They removed the appendix and installed a port this morning.The port is to help with the upcoming chemo. For now I’m on pain meds and that’s making this tolerable so far.

(for more info on the port, have a look at this article)