Friday, January 21, 2005

Here Goes... Everything

Well day 7 of being on the alpha blocker and I really can't complain too much. Most of the side effects went away about two days ago. I still have a dry mouth and stuffy nose every morning when I wake up and a headache everyday but they’re all small things. Much better than I expected before I started the Doxazosin. My blood pressure has been staying pretty steady under 100/60 and usually around 97/54 most times. Of course, today I have dizziness and feel like I might actually pass out but I think that's because I actually have things I need to get done today. LOL. I'm up to 3mg a day now and I’ve also noticed that I’m VERY irritable right now. It’s ugly I tell you. No clue why that has happened or even whether it’s a side effect of the meds or something else.

Lil Man has done better than I could have ever imagined with weaning. I am so happy and it definately traumatized ME more than him. :) He still asks to snuggle and hold "boob boob" and even tries to latch on every now and then but he goes to sleep at night okay. Still refuses to nap though making both of us very tired by the end of the day. I feel so bad for him as he walks around in a haze from 3pm on. I’m so proud of him though.

Only a few more days until we leave for Tampa. I’m so unbelieveably nervous and it was made worse today when I realized we never went to a Notary Public to get my Living Will, Will, or consent forms for the kids done. Such an important thing how could I forget? :( Now everything is left up to The Fates. Again I have failed.

Everything is almost taken care of for the trip or at least soon to be taken care of.

I sent Dr. BC an email the other night with my blood pressure and side effect log so he would know what was going on. I’ve found that you have much better luck of reaching an actual doctor quicker if you email them. Sad isn’t it? Anyway- he emailed me back and said to stick with 2mg a day (even though I went up to 3mg a day almost three days ago) and then changed his mind and said stay with 3mg. I also let him know that Dr. Wells wanted him to be sure to do a biopsy of the liver while he was doing my surgery. I didn’t ask why but I’m sure it’s so they can test the tumors in my liver to make sure they are medullary for the study coming up.

I sent Dr. Wells an email last night asking him if me joining the study later was an option. The way everything has been going I just don’t know how we are going to do it. Money is tight, I don’t have any family to help, and I don’t seem to have enough friends to help either. I told him that I am not giving up my spot in the study and if I can’t join later then I will figure out something but I had to ask. I also let him know I wasn’t trying to be ungrateful or anything else.

He called today to talk to me and we had a glimmer of hope for a minute when he said they might let me just keep Lil Man in the room with me. He called and they said “no” though so that was a little deflating. He said he had some more ideas though and he would get back to me on Monday. He said that they are starting with 8 people in this study and then if the results are good from them then that will lead to other studies in other places with more people. He told me that he wants me to stay one of the first 8 though and thinks it’s important with how much my cancer has already spread.

For the first time I am actually afraid of the cancer and what it might/can do. I think sometimes I’ve taken too much comfort in the fact that it’s “slow moving” or that other people have it in more important places and are still alive. I just don’t know how to make it all real in my own mind. Luckily I have Dr. Wells looking out for me though and he feels that it’s important for me to be in this study which reminds me that it’s important. I am forever thankful for Mary who led me to him in the first place. :)

Well unless something happens between now and my surgery on Tuesday, this will be my last update for awhile. I’m not sure when I will get back online again to update. From what I hear it’s going to be a rough week or two. Thank you to everyone who has kept us in their thoughts and prayers. They are greatly appreciated.

It's weird to think that these are my last days of being surgery free. From here on out surgeries will be the norm for me and someday I'll look back and wonder what the big deal with that first one was. I hope to “see” you all soon and if by chance I don’t then I would like to end my blog with this…

Woo Hooooooooooo what a ride! ;)

No comments: