9toes's blog

Went today and got drained. They only got 6 liters out this time. Hopefully this is a sign that things are getting better in there.

I had two appointments this past Monday, 12/14. First I went to get my port flushed and then to get the fluid drained from my abdomen again. The port flush was surprisingly quick. It only took about 2 minutes. As for the fluid draining, the procedure is called paracentesis, they got 7 liters this time.
Someone had suggested to me that I weigh myself before and after that gets done. Well, I kind of did this week. They weighed me at the oncologist’s office and I got on a scale on the way out of the hospital after the paracentesis. The morning number was 241 and the afternoon was 227. This is a 14 pound difference. More importantly to me, it means that aside from the fluid, I’ve lost about 20 pounds since early November because I was weighing around 250 at my first visit to my current oncologist.

I finally heard something positive from M.D. Anderson. They told me today that the doctor will see me on Monday January 4th. This is a huge weight off of my mind because we finally know something.

I just got off the phone with Anderson’s imaging department. I asked about the CD’s to see if all 3 of them needed replacing. Fortunately, the guy I spoke with was able to check, and only one of them didn’t work. So, I called that hospital and they are making a new disk in the format that Anderson uses. So, it should be in their hands by the end of the day.

I got a call yesterday from the same person at the referrals office M.D. Anderson saying that the CD’s that my grandma hand carried to the doctor aren’t compatible with their library. So, according to her, we have to get new CD’s in the correct format and bring those down. WTF is going on down there? Why wasn’t I told about this special format in the first place?

I went in and got more fluid drained today. They say they got 5.5 liters this time.

Afterward I called M.D. Anderson to check on my referral. I called the doctor’s secretary. She transferred me to the business office. They transferred me to the referral office. She told me that  she had received the Cd’s, etc. and sent them to the “library”, whatever that means. So, what the devil is going on? Has the doctor seen them? If not why did he ask that they be rushed down to him? I can’t help but feel that I’m getting some kind of a runaround here.

So, I called my oncologist to ask him what he knows about the situation, and he said he’s going to call down to check and get back to me.

Saw the oncologist yesterday. He’s going to get in touch with the guy at MD Anderson to see about getting the surgery. Failing that I will start chemo this Friday. It will be 5 hours every other Friday, go home with a pump attached, and back on Sunday to remove the pump.

Here’s a link some info on the surgery: http://www.appendix-cancer.com/Cytoreduction%20Surgery.htm

The fluid built up again and I had it drained again. This time they got 4.45 liters.

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.