Ostomy, why not take ostomy?

I tried to have a normal weekend, since I may be in the hospital next weekend. Yesterday, I went to two groceries, donated to the Kentucky Education Fund by buying another losing PowerBall ticket, took two walks, sat and talked with two friends who brought me some food, paid some doctor bills, paid my other bills, went over what I need to do before I start the cleansing on Tuesday.

Today, after working for several hours, I was at the cancer center from 1:00 to 4:45 meeting with the chemo oncologist and radiation oncologist. I also met with several nurses, an oncology pharmacist, and afterwards walked, with my good buddy who went with me, through a torrential downpour (with no umbrellas) to get to the colorectal doctor's office to try to talk to her nurse about the FMLA she had sent in, because my case worked said it's invalid.  The nurse wasn't there, but I left a letter which I'd prepared for her, and she called me this evening.  

FMLA is a nice way to protect your job, but you need a secretary to keep up with it. The case worker doesn't like what was filled in and the nurse doesn't like that the case worker doesn't like what she filled in. This makes me nervous and I should not have to worry about it. Both people are telling me something different, and I can't fill out the form myself, so I have to rely on them to keep me "legally" employed. When I start chemo treatments, that doctor's office will need to fill out another FMLA form. FMLA for cancer is not easy with all the doctors involved and the nuances. I don't have time to coordinate it with a full time job, cancer, a house, pets, and Pretty Boy Rhoid. And soon, I'll be taking care of a bag of poop hanging from my stomach. 

I saw the radiation doctor first and he believes I have a 100% chance of a permanent colostomy. There is not much wiggle room there. He thinks that the radiation will increase the size of the fistula, so that it cannot be surgically repaired. This news did not cheer me up. He also did several painful exams of both my rectal and vaginal areas, which made me do some deep breathing, which didn't really help a lot, and then he used some long, thin, needle-like device to shoot tiny silver pellets into me, which I think will be used to determine the marking for the radiation. In spite of the pain and bad news (he is wrong!), he is a good guy and his nurse is delightful and compassionate, and I liked them both. He has an accent, so when he told his nurse to help him take off his gloves which were bloody, I thought he said he was "funkinated", but he said contaminated. I like my new word better. I am not going to believe the colostomy is permanent until my colorectal surgeon says she can't fix it. In six months, they may have something new to use anyway - hey, I can dream, can't I? After the radiation oncologist told me about the radiation (25 treatments over 5 work weeks that will take < 10 minutes), we discussed the need for a PET scan to see if the cancer has spread.  

Then I waited some more because the radiation doctor had held me past the meeting time with the chemo doctor, known as the medical oncologist, so the chemo doctor was late getting in to see me. When he arrived, he came with the radiation oncologist who said that they had discussed a possible clinical study for me. Then he left, and the chemo doc explained it in detail to me. Because of the size of my tumor (they keep reminding me that it's "REALLY BIG") it's a stage 3 tumor. If it has metastasized, it becomes a stage 4 - hint: in cancer, higher stages aren't desirable. The treatment is called TIP and is named after the three main common/short names of the chemo drugs used. Sometime after my colostomy heals, and the PET scan is done, I would be hospitalized for 2 - 3 days and get the three drugs. I could have all the ice cream I wanted (no, wait, that's for a tonsillectomy.) Then I would not get any treatment for 3 weeks. Then I would go back in and do another cycle, and since I'd already had one cycle, I would really be looking forward to the 2nd cycle and more endless ice cream and delicious hospital food which I might be too nauseous to eat! I believe they said that they would stop after 2 treatments, although I thought that he mentioned 4 treatments in some context, but I don't know why or what would necessitate that. The risk is toxicity to the blood which would lower my red, white, and not blue, but platelet counts, which would make me more susceptible to infection. They give shots for the blood count issue and all kinds of drugs to help with side effects. This regimen has removed the cancer totally in the 8 patients they have done it on, except for a person whose immune system was already compromised.  The difference is (as far as we know until they do the PET scan) that all those people's cancers had metastasized. I am not sure if they said that I could still try it, if I wanted, if the cancer is only in one location, or if they would just start me on the regular chemo/radiation treatments instead. I would still have to have the regular regimen of chemo and radiation after the TIP procedure anyway, because the regular treatment protocol uses different chemo drugs and the radiation should get rid of any cancer cells left "behind."

I finished with the chemo doctor, who was very compassionate and honest and whom I also really liked. A very nice doctor, who had been in the room while the chemo doctor was telling me about the TIP procedure, asked me some questions about how this all started. If she had just read my blog, she would be up to date, but apparently, word hasn't gotten out yet. I did give her the name of my blog and she said she wanted to read it. I think she liked the catchy title. Next, an oncology pharmacist came in and told me all about the side effects of the TIP drugs, none of which I can remember and none of which would make me want to get out of bed in the morning, unless I had to empty my "pouch" - remember what that is? Everyone told me that I will lose my hair, but I'm more concerned about losing my mind, although there doesn't seem to be a lot left.  While she was talking to me, I noticed the phlebotomist come in behind her and start getting out the blood drawing tools: saw, pick-ax, the rack, blindfold, bucket, etc..  She said if she used my port it would hurt, since it's new. Great! Choose your pain! So I let her draw blood from my arm, but this woman is great!  I didn't mind at all, or not much anyway. She is the same woman who drew it last week and she didn't even have a pencil or paper! She doesn't make me make a fist, my criteria for a great phlebotomist! I told her that I liked that and she said, she didn't want to have to watch where the fist was going while she was drawing blood. Seriously, do you think I'm going to try to punch someone who has a needle in my arm!!! My good friend and neighbor, who had gone with me today, held my hand, and she will not be able to use her hand for a while. While the oncology pharmacist was winding down about the drugs' side effects (my mind was gone and I was distraught by then), my friend, who is more of a fun-loving, curious child than I am, started playing with the foot pedals of the examination table that I was lying on. The phlebotomist came over to try to rein her in, but then they started playing musical table, while I tried to listen to the pharmacist as my body was being raised and lowered.      

This ends my update for today, and there may not be another one, until I get out of the hospital with my new buddy, the ostomy bag. I'm going to have to name him and/or the stoma. Please send suggestions, and I will post them on the blog, if they don't irritate me, or if they're not better than the names I come up with. I'm wiped out and tomorrow during my "cleaning" for the colostomy, I will just be wiped. But at least it's something I already know how to do and don't need any training on. I don't know if I told you that my colorectal doctor's ostomy nurse sent me home with a great (I assume) DVD on colostomy and ileostomy and the pouches. I have not had time to watch it yet, because of dealing with FMLA papers, and the nurse said to wait to watch it anyway.  I'll bet it's Academy Award winning material. Let me know if you want to come watch it, and I'll provide the poopcorn.