I had a good day at work, wasn't exhausted, came home and all was fine and then a few words and information changed my entire mood and outlook. It went downhill fast. Like a small lovely snowball that got kicked off the side of a mountain and started rolling and rolling, collecting ice and rock...yeah, that's how I feel right now. And it sucks. I am not feeling sorry for myself, I am not asking for any pity. Once in awhile I get an overwhelming urge of despair and nobody knows what it's like. I cannot explain to anyone the heaviness that can take over and it is hard to turn off the waterworks. I had a good weekend and a good day...that's what really sucks. I didn't see this coming. I know the intention wasn't there, but it happened.
I tried to go for a walk to get some fresh air, but Marley wanted to come with me and she grabbed a poncho and had shorts on so she froze and we made it two blocks away before we turned back. She knew something was wrong, she always does. I explained to her that I just don't want to be dealing with medical stuff all of my life and that everything has changed so much that sometimes it is hard for mom. Her sweet responses were so mature, "It will be all done before you know it", and "Besides a haircut you look the same to me." Somehow she always knows what to say to me.
I don't even know if Brad knows I am emotional, and I don't want to hear him say "get over it". He doesn't understand why I listen to people and hang on their every word. I guess it is just another flaw of mine. Add it to the list. Everyone says this is hard on him too, I guess it may be, but you wouldn't know. No heartbeats have skipped there. There are a few changes, but I haven't inconvenienced him too much. I know I am damaged goods-I don't expect him to like what he sees. I don't. I look so different-better than before though. Of course I want to look like I used to, but what choice did I have? All I can think of now is that I will end up some overweight, ugly, sickly person that only my kids could love. I was having a good day, now...downward spiral. Maybe I am pathetic. Maybe I should quite this blog crap so I don't have to let everyone know how pathetic I am. It's pretty silly to be putting this all out there to be looked at with pity. I can look in the mirror for that....One thing I am not is a liar, so I can't blog and say all is fine when it isn't and I guess I don't need to be publicly vulnerable anymore...maybe it's time to quit.
Monday, September 30, 2013
Sunday, September 29, 2013
Easing Back to Me
I love fall weather. Jeans, long sleeves...a good reason to sit by a fire. Fall is the best, and today was a beautiful weathered day. For the most part it was a clean and putz around the house day, which was needed after yesterday. Dane returned from his sleepover all tired out, expected. We did some Halloween decorating, Marley and I that is. Brad baked bread, we cleaned up a bit, then went to a neighborhood Oktoberfest. I love parties when they are across the street from my house. No driving, can go home if needed, all good. We hung out there for a several hours, pretty chill. A few lederhosen, steins and food. I love my neighborhood and how awesome the people are, it is a great place to live.
Home now, not too late and getting kids ready for bed and another school week. I think this week is a little less crazy and really starts a week with no new chemo in my system. I am using positive thinking to get my energy back. I am ready. After letting loose on that jerk coach, and having some low key social time...I am feeling like things can get back to my normal. Sure I have only one week off before the next round of crap starts, so I want to enjoy it. I have even planned to go out on a date with my husband on Saturday and have Brad's mom come and hang out with the kids. I think I want sushi. Haven't had sushi since the night I found out I had cancer. That was back in March. I bet it will taste really, really good. Or at least I hope I still like it. I think so, nothing happened with my taste during treatment, dodged that side effect.
Tomorrow also marks the start of my chemo weight loss program. I shouldn't want to eat more and now I need to lose what I have gained, just in case the other drug does make me gain weight. But like I said, I am going with the weight loss that the paper said, nowhere did it say weight gain was a concern. Time for some good side effects for a change. Plus, the mind is a powerful tool and I am going to stay positive. I told the nurses that when I see them in three weeks, I will have lost at least 5lbs. I think that is a totally realistic goal. Has to start tomorrow though, Karen made chocolate chip cookies...I had two... oh well :)
Home now, not too late and getting kids ready for bed and another school week. I think this week is a little less crazy and really starts a week with no new chemo in my system. I am using positive thinking to get my energy back. I am ready. After letting loose on that jerk coach, and having some low key social time...I am feeling like things can get back to my normal. Sure I have only one week off before the next round of crap starts, so I want to enjoy it. I have even planned to go out on a date with my husband on Saturday and have Brad's mom come and hang out with the kids. I think I want sushi. Haven't had sushi since the night I found out I had cancer. That was back in March. I bet it will taste really, really good. Or at least I hope I still like it. I think so, nothing happened with my taste during treatment, dodged that side effect.
Tomorrow also marks the start of my chemo weight loss program. I shouldn't want to eat more and now I need to lose what I have gained, just in case the other drug does make me gain weight. But like I said, I am going with the weight loss that the paper said, nowhere did it say weight gain was a concern. Time for some good side effects for a change. Plus, the mind is a powerful tool and I am going to stay positive. I told the nurses that when I see them in three weeks, I will have lost at least 5lbs. I think that is a totally realistic goal. Has to start tomorrow though, Karen made chocolate chip cookies...I had two... oh well :)
Saturday, September 28, 2013
Day of Ball
A full day of ball, sun and drama.... We started out with a great game by the Sluggers, the girls won their first playoff game! Whoo-hoo...another game on the horizon. I am proud of the progress they have made, but another game....
Then we had a short break at home before Dane's game. I laid on the couch for a bit because I needed to. Although I don't really do anything but sit at Dane's game, it just takes a lot out of me to be outside all day.
Let's talk Dane's game...oh, boy. I will make a long story short, or at least bearable. We were winning. It was a great game, and Dane made a beautiful unassisted double play, really nice. It was the bottom of 7th inning and the other team started to make a comeback. Okay fine, we did that on Thursday-but here's the kicker. The other team was shaking the fence and screaming at our pitcher the entire time. They were taunting him and screaming and it was so obnoxious. All of our parents were getting really irritated. Our pitcher was clearly shaken, he mustered through and still did okay. However, they got us. They made their comeback and won. Their coaches allowed this behavior. A coach that was on first base walked by at one point and I let him have it. I have not yelled at another adult like I yelled at this guy in a long time or ever. Unless of course you count Brad. :) I told him that his team's behavior was unacceptable and how could he let them scream like that, how could he teach them that it was the right thing to do? I kept going on and on and was just letting him have it about being a responsible coach and teaching kids.... His response was that he was only the third coach and had no say in what goes on. Bullshit! His kid was on that team and he should have been embarrassed. In fact, both those coaches and all the parents of the kids that were so obnoxious and rude should be embarrassed. Who cares about the win, it was the poor lesson they taught them, and they should be ashamed. I was livid. The parents were livid. The team was so sad about the way it went down. Unbelievable. A fair loss and a good game is fine and exciting. This was just ugly.
Funny thing is I have been so quiet for so long, this pushed me far enough to get involved. Coaches like that and parents like that breed future assholes. It is a shame. The umpire made a big mistake when we asked about the taunting, he said it was okay in baseball just not softball. He was wrong and let it go. All the rules clearly say that what they did was wrong. I think our team learned the bigger lesson, what NOT to do, or how to act. Either way, drama, sadness...and an end to a season. Oh, and I believe it or not, I was articulate when I yelled at that guy! Quite shocking for me with chemo brain and word retrieval problems....go me.
Other than ball games, we didn't do much. Walked Dane to Karen's for Josh's birthday party and kind of forgot to eat dinner. In fact, kind of forgot to eat lunch too. Not too hungry either and it's late. I must have enough fat on this old body to start eating itself. Ooooh, fat eating flesh...sounds Halloweeny.
Hoping for some rest. I have one week off of any form of doctor, or treatment. October 7th is the next day I have to go back to my home away from home. I am going to enjoy this week off...hoping the energy level and chemo seeps out soon...I want to get back to me!
Then we had a short break at home before Dane's game. I laid on the couch for a bit because I needed to. Although I don't really do anything but sit at Dane's game, it just takes a lot out of me to be outside all day.
Let's talk Dane's game...oh, boy. I will make a long story short, or at least bearable. We were winning. It was a great game, and Dane made a beautiful unassisted double play, really nice. It was the bottom of 7th inning and the other team started to make a comeback. Okay fine, we did that on Thursday-but here's the kicker. The other team was shaking the fence and screaming at our pitcher the entire time. They were taunting him and screaming and it was so obnoxious. All of our parents were getting really irritated. Our pitcher was clearly shaken, he mustered through and still did okay. However, they got us. They made their comeback and won. Their coaches allowed this behavior. A coach that was on first base walked by at one point and I let him have it. I have not yelled at another adult like I yelled at this guy in a long time or ever. Unless of course you count Brad. :) I told him that his team's behavior was unacceptable and how could he let them scream like that, how could he teach them that it was the right thing to do? I kept going on and on and was just letting him have it about being a responsible coach and teaching kids.... His response was that he was only the third coach and had no say in what goes on. Bullshit! His kid was on that team and he should have been embarrassed. In fact, both those coaches and all the parents of the kids that were so obnoxious and rude should be embarrassed. Who cares about the win, it was the poor lesson they taught them, and they should be ashamed. I was livid. The parents were livid. The team was so sad about the way it went down. Unbelievable. A fair loss and a good game is fine and exciting. This was just ugly.
Funny thing is I have been so quiet for so long, this pushed me far enough to get involved. Coaches like that and parents like that breed future assholes. It is a shame. The umpire made a big mistake when we asked about the taunting, he said it was okay in baseball just not softball. He was wrong and let it go. All the rules clearly say that what they did was wrong. I think our team learned the bigger lesson, what NOT to do, or how to act. Either way, drama, sadness...and an end to a season. Oh, and I believe it or not, I was articulate when I yelled at that guy! Quite shocking for me with chemo brain and word retrieval problems....go me.
Other than ball games, we didn't do much. Walked Dane to Karen's for Josh's birthday party and kind of forgot to eat dinner. In fact, kind of forgot to eat lunch too. Not too hungry either and it's late. I must have enough fat on this old body to start eating itself. Ooooh, fat eating flesh...sounds Halloweeny.
Hoping for some rest. I have one week off of any form of doctor, or treatment. October 7th is the next day I have to go back to my home away from home. I am going to enjoy this week off...hoping the energy level and chemo seeps out soon...I want to get back to me!
Friday, September 27, 2013
Information Overload
Information overload...repeat...information overload....shut down....
Had Doctor appointment and Herceptin today. Met with doc for quite a while, glad she doesn't rush me, I would be really upset if I felt like I was being pushed through. She doesn't do that, she is very nice. She also admits that she has no idea what it feels like to be in my shoes, which is humbling I think. She also used the term, you HAD cancer, like in the past tense. That is hopeful. She explained all that I am to do in the future now, radiation, Herceptin and Tamoxofin are all preventive drugs. That's all good, but then you need to listen to new side effects and possible things that these drugs can cause. My newest concerns with the Tamoxofin will be hot flashes, clots and possible uterine cancer. So I told her my concern of by the time I come out of this will I have a heart condition and a new cancer to deal with. She told me I can't worry about that. Seems pretty scary. I also asked if I could just have a hysterectomy now and prevent any form of uterine cancer in the future. Why not, I am done with it, I am not having any more kids. She thought it was a bit extreme. I don't. Seriously, I don't. This is the drug that I take for a minimum of 5 years, that uterus will be removed sooner than later, guaranteed. All useless parts that could be potentially hazardous to me can be and should be removed. New philosophy.
Brad was with me at the doctor and I was a bit overwhelmed at all the new information. I have to see her again in 6 weeks, and that is when I will start the T. Six weeks to get me ready for the drug I take for the next...forever. Brad had to go back to work and I got the H, and sat and talked to the nurses, whom I would call friends just about now. It is only a 30 min. infusion once started so it was just chatting time, it was super fast. During that time I also found out I need another Mugga scan, which Doc, forgot to tell me.... I have that on October 7th, the same day I meet with the radiologist. I will have to take a half day off of work for that, the scan is at 1:15. That is the icky one where they take my blood, mix it with goo, and give it back to me then scan my heart. Thought is nasty, doing it is even worse.
The evening was much nicer than the information overload this afternoon. Brad and I went to hang with Heidi and David. I had a lovely Weiss beer and pizza. It was a normal night, beautiful weather too. Dane stayed home and Marley went to movie night at her school. I came home with Mars, she has a game and I didn't' want to leave Dane too long. Brad is still socializing. Ready to crash, hopefully. I don't want to think of all that I heard, read and learned today. I have to focus on the good things that all is well, my blood counts are great and I am really on the up and up with everything. Doc said nobody knows what can happen, I can't plan for what may happen in 5 years. Heck, I understood what she meant, but I DO want to plan for five years in advance, assuming all is well. I think it just came out weird. I get it though. Calling it a day, long and tiring.
Had Doctor appointment and Herceptin today. Met with doc for quite a while, glad she doesn't rush me, I would be really upset if I felt like I was being pushed through. She doesn't do that, she is very nice. She also admits that she has no idea what it feels like to be in my shoes, which is humbling I think. She also used the term, you HAD cancer, like in the past tense. That is hopeful. She explained all that I am to do in the future now, radiation, Herceptin and Tamoxofin are all preventive drugs. That's all good, but then you need to listen to new side effects and possible things that these drugs can cause. My newest concerns with the Tamoxofin will be hot flashes, clots and possible uterine cancer. So I told her my concern of by the time I come out of this will I have a heart condition and a new cancer to deal with. She told me I can't worry about that. Seems pretty scary. I also asked if I could just have a hysterectomy now and prevent any form of uterine cancer in the future. Why not, I am done with it, I am not having any more kids. She thought it was a bit extreme. I don't. Seriously, I don't. This is the drug that I take for a minimum of 5 years, that uterus will be removed sooner than later, guaranteed. All useless parts that could be potentially hazardous to me can be and should be removed. New philosophy.
Brad was with me at the doctor and I was a bit overwhelmed at all the new information. I have to see her again in 6 weeks, and that is when I will start the T. Six weeks to get me ready for the drug I take for the next...forever. Brad had to go back to work and I got the H, and sat and talked to the nurses, whom I would call friends just about now. It is only a 30 min. infusion once started so it was just chatting time, it was super fast. During that time I also found out I need another Mugga scan, which Doc, forgot to tell me.... I have that on October 7th, the same day I meet with the radiologist. I will have to take a half day off of work for that, the scan is at 1:15. That is the icky one where they take my blood, mix it with goo, and give it back to me then scan my heart. Thought is nasty, doing it is even worse.
The evening was much nicer than the information overload this afternoon. Brad and I went to hang with Heidi and David. I had a lovely Weiss beer and pizza. It was a normal night, beautiful weather too. Dane stayed home and Marley went to movie night at her school. I came home with Mars, she has a game and I didn't' want to leave Dane too long. Brad is still socializing. Ready to crash, hopefully. I don't want to think of all that I heard, read and learned today. I have to focus on the good things that all is well, my blood counts are great and I am really on the up and up with everything. Doc said nobody knows what can happen, I can't plan for what may happen in 5 years. Heck, I understood what she meant, but I DO want to plan for five years in advance, assuming all is well. I think it just came out weird. I get it though. Calling it a day, long and tiring.
Thursday, September 26, 2013
Crazy Night
OMG is all I have to say! I think someone slipped Marley an espresso this evening! She has driven me NUTS all night, while we were at Dane's game. She was a ball of feisty energy, I haven't seen her so jacked up in a long time...kinda jealous of that energy....
The boys made an amazing comeback from 8-1 losing, to winning the game. It's like they channeled crazy from Marley. It was an exciting last two innings. I am glad I had enough energy to see this game. It was a beautiful night. Fall is here and that makes me happy. Jeans (if they fit) sweatshirts and fleece, hats (warm cute ones, not because I have to hide my head hats). Time to get the Halloween decorations out. This weekend is close enough to October 1st- We love Halloween around here.
Tomorrow I have to go get Herceptin. I don't want to go, I graduated. It is like making me sit a detention on a weekend. No thanks. I wanted a week of no infusion, no pokes and blood draws, but no. I am also meeting with the doctor. I am sure she is going to get me going on the next drug du jour, the Tamoxofin, however you spell it. I hope there aren't any side effects to it. Probably insomnia, that would be my luck. From what I have heard, it doesn't, but I will listen to the warnings. This is the drug that I will be taking for 5 years, and they are now bumping women to taking it for 10 years, but I have also heard that it may cause uterine cancer. From one part to the next, who knows what's right. Maybe take it for five years and in that time they find a cure for all cancers and stuff, right? Right.
Since the chemo is done and I mark one week, I should start feeling more energy as the next few weeks come. As the drug wears off, I am hoping to get moving more and getting out socially (besides ball games!!!). I have been a wall flower too long. I want to go out and have some fun! My fun may be different now, but I miss laughter and general goofing around. (Don't get me wrong, I laughed as much as I could these last 7 months). A lot of laughing was at myself. I was my own bad joke.
That's all for tonight, for posts, for the day and for me... looking forward to my fuzzy jammy pants and my pillow. TGIF, for whatever reason.
The boys made an amazing comeback from 8-1 losing, to winning the game. It's like they channeled crazy from Marley. It was an exciting last two innings. I am glad I had enough energy to see this game. It was a beautiful night. Fall is here and that makes me happy. Jeans (if they fit) sweatshirts and fleece, hats (warm cute ones, not because I have to hide my head hats). Time to get the Halloween decorations out. This weekend is close enough to October 1st- We love Halloween around here.
Tomorrow I have to go get Herceptin. I don't want to go, I graduated. It is like making me sit a detention on a weekend. No thanks. I wanted a week of no infusion, no pokes and blood draws, but no. I am also meeting with the doctor. I am sure she is going to get me going on the next drug du jour, the Tamoxofin, however you spell it. I hope there aren't any side effects to it. Probably insomnia, that would be my luck. From what I have heard, it doesn't, but I will listen to the warnings. This is the drug that I will be taking for 5 years, and they are now bumping women to taking it for 10 years, but I have also heard that it may cause uterine cancer. From one part to the next, who knows what's right. Maybe take it for five years and in that time they find a cure for all cancers and stuff, right? Right.
Since the chemo is done and I mark one week, I should start feeling more energy as the next few weeks come. As the drug wears off, I am hoping to get moving more and getting out socially (besides ball games!!!). I have been a wall flower too long. I want to go out and have some fun! My fun may be different now, but I miss laughter and general goofing around. (Don't get me wrong, I laughed as much as I could these last 7 months). A lot of laughing was at myself. I was my own bad joke.
That's all for tonight, for posts, for the day and for me... looking forward to my fuzzy jammy pants and my pillow. TGIF, for whatever reason.
Wednesday, September 25, 2013
Day By Day...Night By Night...
I must have had a little sleep last night because I was less of a wreck today. I did not want to fall asleep driving home, nor hit the couch immediately and cry. That's good, right? I couldn't have anyway, I had a 4:30 appointment out near the Fox Valley Mall, which isn't that anymore btw, it has a new name. I finally got new prosthesis and better garments that fit my body better. It was too long of a wait for that, since I will hopefully only need them for a little over three months. But, as I know...three months can be a long time.
After driving all the way out there after work in traffic and home again I was trapped. There was the Batavia homecoming parade and all streets to my house were closed. I had to wait it out. I was across the street and wanted to be home and had to sit there. I ended up sitting in the car and my neighbor was in her car next to me. How goofy was that, we couldn't get home. Argh.
Dinner and a game of Guess Who with Marley. A little online Etsy shopping for things for Marley's Halloween costume and I bought myself something! A couple of years ago when we were in Portland, OR, we went to a huge art fair and I bought a cool, creepy ceramic head. Which I love. Yesterday I accidentally found the same artist on Etsy without searching for him, so I had to buy my sculpture head a friend head. I had to. :) What were the chances of finding the same artist without searching him out? There are a lot of artist on Etsy, it was meant to be.
Going to get kids in bed and get myself ready for tonight's attempt. Tomorrow we have a game and I hope I am not a wreck and can go. Taking it day by day, depending on night by night. What a fun way to live.... I know, temporary....blah, blah...
After driving all the way out there after work in traffic and home again I was trapped. There was the Batavia homecoming parade and all streets to my house were closed. I had to wait it out. I was across the street and wanted to be home and had to sit there. I ended up sitting in the car and my neighbor was in her car next to me. How goofy was that, we couldn't get home. Argh.
Dinner and a game of Guess Who with Marley. A little online Etsy shopping for things for Marley's Halloween costume and I bought myself something! A couple of years ago when we were in Portland, OR, we went to a huge art fair and I bought a cool, creepy ceramic head. Which I love. Yesterday I accidentally found the same artist on Etsy without searching for him, so I had to buy my sculpture head a friend head. I had to. :) What were the chances of finding the same artist without searching him out? There are a lot of artist on Etsy, it was meant to be.
Going to get kids in bed and get myself ready for tonight's attempt. Tomorrow we have a game and I hope I am not a wreck and can go. Taking it day by day, depending on night by night. What a fun way to live.... I know, temporary....blah, blah...
Tuesday, September 24, 2013
Bad Chapter
I am not sure what is going, on but I can't shake the exhaustion. Since chemo on Friday I have been wiped out. I am resting and much as possible. I hit the couch both yesterday and today as soon as I got home. Yesterday was horrible. I could barely function. The boys were gone and I had to get up twice to get/take Marley places. I laid on the couch and cried. I crawled into bed at 8, laid there, wrote one sentence as a post from my phone and was just miserable. It's like the Ativan has just stopped working altogether. I am desperate for sleep. I considered taking another at 3 a.m., but was afraid it may actually work and oversleep for work. I am a tired mess.
Today I went straight to the couch on the porch. It was very comforting for me when I was doing the hard chemo. I had Dane read and talk about his Magic card game, which I find confusing and boring, it actually relaxed me. I laid there for about an hour or so before Marley came looking for me. That rest was important. I am awake enough to help with dinner, but am already in pajamas at 6:30 p.m. I am really frustrated because I want to be happy and celebrating that I am done with chemo, not fighting this fatigue. I am also getting a cold. I don't know how I couldn't, I have a class full of sneezing students, so much for trying to stay healthy at work. I am also done with baseball. They lost last night and Brad came home a crab ass and didn't even ask a word about me, but responded all crabby when I asked one question to him. Dane shook it off, because guess what folks, it's Little League....
Enjoying everything right now....not. The runny nose, the zombie like feeling, the ignoring of the cranky husband, the foggy eyes, the lack of having any energy to do or enjoy anything right now. Poor me, waaaaaaa! Shut it you big baby! I was under some false illusion that Friday was the start of all things better or good, the next chapter I thought all positively. Well, this chapter kind of sucks. I am ready to turn the page....
Today I went straight to the couch on the porch. It was very comforting for me when I was doing the hard chemo. I had Dane read and talk about his Magic card game, which I find confusing and boring, it actually relaxed me. I laid there for about an hour or so before Marley came looking for me. That rest was important. I am awake enough to help with dinner, but am already in pajamas at 6:30 p.m. I am really frustrated because I want to be happy and celebrating that I am done with chemo, not fighting this fatigue. I am also getting a cold. I don't know how I couldn't, I have a class full of sneezing students, so much for trying to stay healthy at work. I am also done with baseball. They lost last night and Brad came home a crab ass and didn't even ask a word about me, but responded all crabby when I asked one question to him. Dane shook it off, because guess what folks, it's Little League....
Enjoying everything right now....not. The runny nose, the zombie like feeling, the ignoring of the cranky husband, the foggy eyes, the lack of having any energy to do or enjoy anything right now. Poor me, waaaaaaa! Shut it you big baby! I was under some false illusion that Friday was the start of all things better or good, the next chapter I thought all positively. Well, this chapter kind of sucks. I am ready to turn the page....
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