Treatment Plan as of Today

So, looks like I will be receiving treatment at the Mayo Clinic in Jacksonville starting the week of November 8^th.  I first have to have a port installed.  Seriously, I am becoming more of a bionic woman. . With my wound vac and the ostomy bag, and now getting this port on my shoulder to accept the chemo!!!.  However the wound vac comes off on Monday at 4 p.m. (95% chance).  Yea!  The port installation will require out-patient surgery maybe next week. 

My official cancer name is now “colon/peritoneal.”  HOWEVER, the advanced PATH report was delayed, as I reported yesterday, so we will not know the primary seat until Friday so the name could change again.  The belief, though, is that the treatment would be very similar to that for colon cancer, so based on that, she told us what to expect.

(PS I am calling my cancer a designer cancer since it is so rare only .01 percent of adenocarcinomas are of the signet ring cell type.  Maybe I’ll start a line of jewelry or pocketbooks.)

We will be using the CA 125 as the tumor marker, used mainly for ovarian and peritoneal cancer, not colon cancer --so this was a surprise.  (The colon cancer tumor marker is a CEA.)  Anyway, mine has moved from 42 to 114 which is a not a huge lift, but the thought is that we should attack it with aggression now to eradicate it and perhaps this will increase the odds of my having my colon reconstructed and my coming off the bag.  The plan will require not only 6-7 months of chemo, but one or two surgeries which will actually cut out the little tumors in the peritoneal wall as well as the injection of drugs into the peritoneal cavity while I am under sedation.  The surgeries can last 10 hours or more. They can do this surgery at Mayo and in a few other places (not in Asheville), so again we are lucky to have access to Mayo.

My chemo will be every two weeks.  I go into the clinic on Day one and receive the drip there via an IV.  Then the infusion pump comes home with me for Day two and Day three. Then 14 days from Day one, I start over again.  We are due to start the week of November 8^th. I will be on 5FU, and several other chemo drugs, which I did not write down correctly, but will find out next Friday.  The doctor said I would experience extreme fatigue and hair loss, but the nausea part is not common any longer . . . but since I am extremely sensitive to nausea (still get motion sickness) we’ll see.  Some patients experience neuropathy as well.   

Well, that is it for today.  Remember to appreciate life. . you never know how much time you will have.  So THANK YOU again for all your notes. . And I hope you will  be patient with me if if I cannot get back to you right away.  Please know I am reading your notes and feel so honored to know each and every one of you.  You are keeping me going.