I'm in the mood to tell a story.....

This life I have is a total gift. Most of the time I think I can forget about the past and it feels like a million miles away, but when I see certain stories on the news, it forces me to think about things I haven't thought about in a long time.

This week I saw a story about a young child who was abused and died and thought several times about how that could have been me. Most people don't know this about me but, my first 18 years were spent in total terror. First the terror that a young child feels when woken up in the middle of the night by strangers, who tell her that her mother has been taken away to the hospital and you must go with them, and later by a cruel step-father who found perverse pleasure in verbal abuse so withering that it paralyzed me for many years after it stopped ringing in my ears. I see those stories on the news and I think, what a shame, too bad. I can distance myself now because I have a warm home and food to eat and people who care about me. But, inside my head, every once in a while, I still hear the words my step-father said. "Women are worthless!" "You should just get married because your never going to be able to support yourself, your not smart enough." "Your to dumb to go to college." "Your art means nothing, now if you were good at math, that would matter." It's taken many, many years to forget those stinging words that dogged me for so long, and I will never forget the violence he inflicted on my mother. It took a long time for me to realize it wasn't me, it was him. He was sick. Maybe he was jealous. God knows why a grown man would enjoy making a 10 year old girl cry and shake because she can't tell him what 36 x 15 is? God help me but I can never forgive the man. For years after he died I hoped he was burning in hell or his soul was suffering some horrible punishment. Now I just hope that it has found some peace because he was a tormented, ugly person. The only thing good that came out of his and my mother's union was my brother, Shawn.

So, there, I got that out. I just think about it sometimes but it doesn't hurt me anymore. It's so far in the past, if feels like another life. I just felt like writing about it tonight.

back to work...

I went back to my job this week. I had mixed feelings about it. First I felt glad to get back to a semblance of a normal life, but at the same time I feel stressed because I felt like I've missed so much in the past year. I was on disability for almost 6 months, thats half a year! I feel like I don't know anything anymore and its a little frustrating. I'm sure I iwll get back in the swing of things but right now I just feel woefully inadequate!

I spent last Friday in the emergency room because I thought I was having a heart attack or something. I had all the symptoms, and then when I went online and read that the chemo drug I am taking can cause heart problems, well then my imagination got the best of me. I was sure I was having a heart attack. So I called my doctor and she sent me to the ER. Luckily, I wasn't having a heart attack. They couldnt really find anything wrong with me, other than the fact that I was having heart palpitations.

On the brighter side, I have also seen many women online at breastcancer.org who are saying that Avastin has been a life saver for them and has completely wiped out their cancer, so I am hoping it works as well for me. I can't wait to be able to go back to a normal life. Jogging, lifting weights, exercising and not getting out of breath easily. No aches, pains, headaches and general tiredness. That will be so nice when I get back there.

I have a feeling that people think since I am back at work that I am all through with treatment. I have had a few people say to me, "You look so good!" Thats fine and everything, ( I'm glad I look good!) but I am still trying to struggle through every day. I have to put limits on myself, and its always been hard for me to do that. I'm a work in progress! I think most people are!

Fun in the Sun

I had a really good time in Florida! I just got back yesterday. When I go down there I don't do much, but I don't mind, because I just like spending time with my sister. I've already been to Disney and Universal so many times anyway (she's lived there for over 15 years!) She has a business and she is there half the day working, so I went with her and helped. Then we just vegged the rest of the day. The only problem is, when I come home I get depressed because I wish I was still there. Luckily it was not too cold when I got off the plane here yesterday, in the 50's. It was just nice to have a break and constantly not have to warm my hands and feet up.

I got a last minute ticket last Friday, after the doctor gave me the ok. I got down there at about 10:45 at night. My sister (see pic above -- I look awful! blech!) lives about 30 minutes West of the Orlando airport so it didn't take too much time to get home. I arrived when they were having a cold spell, but believe me, it was nothing like what I came from! Sunday we went to a State park and saw the manatees that come up the St. Johns river every year in the spring. It was so cool! I will post a pic or two of it on here! Then after that they took me to Daytona Speedway because they are big race fans. I'm not to much into Nascar, but they love it and they were so excited to show me where they sit and all that stuff. By Tuesday the temps were back up to the 70's. Nice! I so needed the sun!

Today I had my second dose of Avastin. They are going to have me start back on the Xeloda on the 21st, so they can keep me on the 2 weeks on, one off schedule that we started. Im not looking forward to it, but, I hope it helps kick cancer ass! I am supposed to be going back to my boring job next Tuesday. I have mixed feelings about that. I want to go back because I am bored, and I don't want to because I am not into that job anymore. I do miss my work friends though, so I can't wait to see them.

My trips to Florida always make me feel so much better though. I relax when I'm there and forget I have cancer. We laugh so much and do all the things that sisters do. I love her so much and I'm so proud of her!

Feeling kind of "hinkey"

I'm in a weird mood today. First I was really tired this morning, could hardly wake up. Now its about 8pm and I'm feeling edgy and wound up, like I should be doing something. It's hard for me to sit around like this when I don't feel good. I am a very active person. I'm generally always doing something. The last couple of days I haven't even been able to crochet (my new hobby)because my hands hurt from the chemo side effects. I always feel like I should be doing something (the third time I said "something"--what that is--I don't know), that's why I am generally awake until 2 or 3 in the morning. I'm going to have to go back to normal sleep hours when I go back to work. I'm supposed to go back in the middle of the month. My company has been really great about my cancer and accommodating me, its just that my disability money has come into dispute. NY state says that I have run out of short term disability, but my company insists that since I went back to work for 30 days in November/December, that their policy is that I get 6 more months of disability. I have a feeling I won't win on this one, so I am going back to work. I don't like worrying about paying the bills.

Tomorrow I get my new dosage of Xeloda. I have a dilemma though. I want to go to Florida to visit my sister (pic above is of me in Florida last summer...I love it there). I hope that in heaven they have beaches and mountains because that is where I would love to spend my time. I have a ticket I bought (several months ago) on an airline that has recently gone out of business (I'm sure you have heard of them). I want to use the ticket but I have to wait until they stop operations as of midnight tonight. Then I can call tomorrow and get my ticket transferred (supposedly). I called Airtran (because that's one of the airlines I can transfer too) and they said that they will charge me $200 bucks for a definite seat, or $100 for a standby seat. So anyway I do it, I am spending more money that I can't afford. This is what I am thinking of doing. Buying a cheaper ticket on Airtran.com (because they are cheaper than $200 online) and then just applying for a refund from the other airline. The cost of the ticket on the other airline was a lot more than the cost of a ticket on Airtran. Still, I am nervous because I am trying not to run up my credit cards. I already have quite a debt. My logic is, the refund will more than cover what I am about to charge (twisted, I know, I'm still spending money). I won't ask my sister for the money because she has already paid for me to visit her twice this past year. I love her to death and I feel guilty that she is spending so much money on me when her business isn't doing very well. I am so desperate to get away because the weather here is dismal! We haven't seen the sun in about 10 days! I am not exaggerating. I don't know how people in Alaska do it! I would need one of those sun lamps. Anyway, if the doctor says its ok I will probably go. I need a little "fun in the sun" before I go back to work.

And one more, taken in my mother-in-law's front yard. This roll of black and white didn't turn out very good and I only got a few good pictures. 

It was one of the best fall days, the sun shining, the leaf litter glittering.... 

Some famous people are buried here, Susan B. Anthony and Frederick Douglass to name a few. 

I think the statues in the cemetery are haunting and just plain gorgeous. 

I am an amateur photographer and artist and I enjoy taking photos. I took these this fall at our famous Mt. Hope cemetery. No, I am not being morbid, I just think it's a beautiful place! 

CT scan was clear

Luckily I do not have a diseased brain. Er, at least that is what the doctor said! : ) There are so many scary side effects to the new drugs I am taking, sometimes its overwhelming. I find its better not to read it all. It makes me paranoid.

Friday I had my first dose of Avastin. They gave it to me through the chemo port that I had installed on the left side ( I sound like a home improvement project! Remind me to give you my opinion someday on breast implants. I had a failed one and it was not nice.) It goes into a central line directly into a major artery. It took a few hours to drip it so I just had to sit there and wait. One thing about cancer centers, the volunteers are terrific. They bring you a heated blanket, food, a pillow. Practically anything you want. It would almost be nice, if you weren't there to get posionous drugs injected. Plus, I just get an automatic reaction now when I even go near the hospital. I feel like I am going to hurl. I know its psycological, and I can't help it. It annoys me. My doctor said there is a medical name for that kind of reaction, but I can't remember what it is. Just driving by makes me queasy. Ick. Good news though, Avastin didn't make me feel too bad. Not half as bad as the chemo drugs I had this summer that made me feel like a combination of a 4 day hang-over and a BAD case of the flu. That was awful.

On Saturday I started taking Xeloda (chemo pills) and I am already having the strange hand/foot syndrome side effect. Last night, after my second dose of the day, my hands started to itch and burn. Its bizarre. Of all things that could go wrong with your body, that has to happen. I mean it hasn't made me feel barfy, or tired much, just big pink hands and feet. When we were first told about the drug they gave me a pamphlet with pictures of the different stages of the hand/foot syndrome. Imagine how it scared the crap out of me to see big red peeling hands. It looked like a third degree burn to me! I have pictures from the pamphlet, but being an editor who works on books, I don't like to provide materials that are copyrighted. The Pamphlet is. It's not too bad yet though, my hands are only mildly pink and itchy. The doctor told me to stop taking the drug immediately when I feel the first symptoms and call. I can't call today because its a holiday, but I will call tomorrow. It means they have to reduce my dose. She did put me on a large dose to begin with so there is room to change it.

Other than that, I am not feeling too bad. I had a very quiet New Years Eve at home. Actually stayed awake til midnight. Last night I went to my sister's house and we watched scary movies and ate a lot. That was fun. I hope everyone has a great New Year and have a happy, safe and healthy year in 2006!