I'm here and alive. I just haven't been on the computer too much lately. Sorry about that. I hate to leave everyone hanging, but sometimes it's just hard to get on here.
So here's an update:
Last week I started my new medicine. I am now on Taxol and Herceptin. The Taxol I get every other week for 8 weeks. The Herceptin is every week for 8 weeks, then it switches over to every 3 weeks for one year. Yes, you read that right ... I will be on Herceptin for one year. The good news is the as far as I can tell the herceptin has almost no side effects (there are other things going on that I don't believe are related to this medicine, but it's hard to tell with the taxol right now) and only takes 30 minutes to get so those visits aren't hours long.
The Taxol is much much much much (yes, we are stressing the much) easier than the other two medicines were. That being said, over the weekend I was hit with intense muscle/joint pain that essentially kept me in bed all weekend. The blessing here is that it happened over the weekend, when Saint Husband is home to, well, do everything!
My energy is still tanking. The chemo has been and continues to lower my red blood count every week. It is very likely that soon I will have to get a blood transfusion because of the red blood cell count. I won't lie, thinking about getting a blood transfusion scares me. I know it's safe but still. There is fear there. But. I'm also committed to doing whatever it takes to get through this in one piece, so if we have to add that to the list of things to do, so be it.
However, that is not the most nerve-wracking things on my mind right now. Maybe you've heard it - it's just starting to hit news outlets, but there is a shortage of many chemotherapy drugs in the US right now (here's one article if you are interested). Taxol (yes, the one I'm on right now) is one of the drugs there is a shortage of. My oncologists office does not day to day whether it will be available. Last Wednesday when I went they had it, but tomorrow? The next day? Next Wednesday when I go into get it again? It may not be available. My doctor has a back-up medicine they will use instead, so I won't have to go without chemo while we wait for it to become available. But some people right now are not able to get the chemo they need and it really makes me mad. Also. I don't want a back up plan. I want the plan A. I don't know, cancer and plan B just don't seem like they should go together. But at least there is a back up plan. As I said, some people don't have other medicines they can take instead.
Anyway, that's what's going on around these parts.
Thursday, August 18, 2011
Thursday, August 11, 2011
Half-way ....
I am now officially half-way through chemo.
The last 8 weeks have taught me so much. There is so much more that happens during chemo than I ever realized before. So for fun I thought I'd share some tidbits with you.
1. First and foremost, the biggest thing I learned is each person reacts VERY differently to chemo. It's such an individualized response.So keep that in mind as you read my list. It might look very different if someone else wrote it. Also, different medicines have different side effects.
2. In the movies the big thing shown is fatigue and nausea. While both of those do and can happen there is so much more that. Chemotherapy has affected my whole entire body. It has caused havoc on my emotions. It's affected my ability to sleep. It has screwed with my mind. I feel like no part of me was untouched by it.
3. My sense of smell has gone haywire. This is actually pretty common with all chemo, so please keep this in mind if you are going to visit someone undergoing chemo. My nose is hyper-sensitive. Perfumes, food, flowers, etc, all can now make me feel nauseous. We even had to switch some of our soap and our liquid dish soap because the smells were so bothersome to me. People who wear tons of perfume or heavily scented anything, I have to take some steps back from. Walking through the grocery store - all those smells mingled together. Oh my. Sometimes when husband is cooking I have to leave the first floor of the house and go to our bedroom to get away from the smell. If you remember nothing else from this list, please remember this. Almost everyone I know who has undergone chemo had the same issue.
4. Aside from feeling tired and sick to my stomach, chemo has given me sore feet, sore hands, sores on my tongue, sore throat and other stomach problems. I didn't know chemo could do all of that until I went through it. Days when my hands are sore, I can't wear my wedding rings which makes me feel sad. I've had to stop wearing some of my shoes because of my feet. At the height of my tongue sores (which are thankfully doing much better now) it hurt to eat, drink and talk. In addition to this, at times I get muscle and joint pain that can make moving at all extra painful. I've been spared the worst of that. Some people get it much worse. Basically my point is chemo affects your whole entire body.
5. My emotions have been a roller coaster of ups and downs. I blame the chemo. It may not directly cause this emotional roller coaster, but the side effects that I'm dealing with, all the doctors appointments, not being able to do what I normally do around the house, with the kids, with my husband, some days I sleep 18 hours, other days I suffer from extreme insomnia. That's in addition to mentally trying to work through the fact that I have cancer, feeling like my body betrayed me, wondering why I didn't know I had cancer sooner, etc, etc, you can imagine some days I'm just an emotional wreck. Thankfully this is not every day or even most days. But some days it's hits so hard and fast.
So as you can see the chemo can just affect every single part of my body, of my life. It makes sense when you really think about but I didn't fully understand it until I was there, dealing with it.
The last 8 weeks have taught me so much. There is so much more that happens during chemo than I ever realized before. So for fun I thought I'd share some tidbits with you.
1. First and foremost, the biggest thing I learned is each person reacts VERY differently to chemo. It's such an individualized response.So keep that in mind as you read my list. It might look very different if someone else wrote it. Also, different medicines have different side effects.
2. In the movies the big thing shown is fatigue and nausea. While both of those do and can happen there is so much more that. Chemotherapy has affected my whole entire body. It has caused havoc on my emotions. It's affected my ability to sleep. It has screwed with my mind. I feel like no part of me was untouched by it.
3. My sense of smell has gone haywire. This is actually pretty common with all chemo, so please keep this in mind if you are going to visit someone undergoing chemo. My nose is hyper-sensitive. Perfumes, food, flowers, etc, all can now make me feel nauseous. We even had to switch some of our soap and our liquid dish soap because the smells were so bothersome to me. People who wear tons of perfume or heavily scented anything, I have to take some steps back from. Walking through the grocery store - all those smells mingled together. Oh my. Sometimes when husband is cooking I have to leave the first floor of the house and go to our bedroom to get away from the smell. If you remember nothing else from this list, please remember this. Almost everyone I know who has undergone chemo had the same issue.
4. Aside from feeling tired and sick to my stomach, chemo has given me sore feet, sore hands, sores on my tongue, sore throat and other stomach problems. I didn't know chemo could do all of that until I went through it. Days when my hands are sore, I can't wear my wedding rings which makes me feel sad. I've had to stop wearing some of my shoes because of my feet. At the height of my tongue sores (which are thankfully doing much better now) it hurt to eat, drink and talk. In addition to this, at times I get muscle and joint pain that can make moving at all extra painful. I've been spared the worst of that. Some people get it much worse. Basically my point is chemo affects your whole entire body.
5. My emotions have been a roller coaster of ups and downs. I blame the chemo. It may not directly cause this emotional roller coaster, but the side effects that I'm dealing with, all the doctors appointments, not being able to do what I normally do around the house, with the kids, with my husband, some days I sleep 18 hours, other days I suffer from extreme insomnia. That's in addition to mentally trying to work through the fact that I have cancer, feeling like my body betrayed me, wondering why I didn't know I had cancer sooner, etc, etc, you can imagine some days I'm just an emotional wreck. Thankfully this is not every day or even most days. But some days it's hits so hard and fast.
So as you can see the chemo can just affect every single part of my body, of my life. It makes sense when you really think about but I didn't fully understand it until I was there, dealing with it.
Tuesday, August 09, 2011
School's in session
We started our homeschool year on Sunday.
I originally thought we'd delay the start, but after lots of thinking about it (including toying with the idea of sending all kids to the local pubic school this year),starting early seemed to be a much better option. That way, should we need to take a day off here or there for any medical reasons, we'll already be ahead so to speak and have more lee-way. Although both girls are showing they can work pretty independently, so I'm actually not that worried about it. As long as they know what to do, they are good at getting it done, which is such a blessing!
We also came to the conclusion that 5yo can not continue at his private school this year. So it looks like he will in fact attending kindergarten at the local public school. I've got a call into the school to find out about registering him (since, um, technically, we should have done all of this in the spring for kindergarten! Yikes!). The difference is all day kindergarten vs. half day. I really wanted him at the all day program purely for selfish reasons ... I will try to do as many doctor visits, including radiation which will be daily, while he's in school and all day would have given me more flexibility. But we'll work with what we can get.
Anyway, this year is going to be very bittersweet for me. It appears (but I also know a lot can change in a year) that both girls want to go to school next year. So this could be my last year as a homeschooling mom. I'm heartbroken about this. I can't lie. But I also understand and at this point won't force them to stay home any longer. We'll see how this year goes though and next year is still a long way off.
For now, we'll be toiling away and hitting the books hard. Our big focus this year will be writing, especially for the 11yo. The 8yo will be focusing a lot on spelling.
I figure starting is the hardest part, especially when the neighbor kids are still home. But we've started. 3 days down. 54 more weeks to go ;-)
I originally thought we'd delay the start, but after lots of thinking about it (including toying with the idea of sending all kids to the local pubic school this year),starting early seemed to be a much better option. That way, should we need to take a day off here or there for any medical reasons, we'll already be ahead so to speak and have more lee-way. Although both girls are showing they can work pretty independently, so I'm actually not that worried about it. As long as they know what to do, they are good at getting it done, which is such a blessing!
We also came to the conclusion that 5yo can not continue at his private school this year. So it looks like he will in fact attending kindergarten at the local public school. I've got a call into the school to find out about registering him (since, um, technically, we should have done all of this in the spring for kindergarten! Yikes!). The difference is all day kindergarten vs. half day. I really wanted him at the all day program purely for selfish reasons ... I will try to do as many doctor visits, including radiation which will be daily, while he's in school and all day would have given me more flexibility. But we'll work with what we can get.
Anyway, this year is going to be very bittersweet for me. It appears (but I also know a lot can change in a year) that both girls want to go to school next year. So this could be my last year as a homeschooling mom. I'm heartbroken about this. I can't lie. But I also understand and at this point won't force them to stay home any longer. We'll see how this year goes though and next year is still a long way off.
For now, we'll be toiling away and hitting the books hard. Our big focus this year will be writing, especially for the 11yo. The 8yo will be focusing a lot on spelling.
I figure starting is the hardest part, especially when the neighbor kids are still home. But we've started. 3 days down. 54 more weeks to go ;-)
Saturday, August 06, 2011
A fun night out ...
First, let me preface this with saying you haven't heard much from me lately because I'm stuck in what I am calling side effect hell. It's like the medicine reached it's tipping point and more side effects have been showing up in the last week. But we'll get through and I don't want this post to be about that. Luckily I have something a little more fun to talk about.
My mom's neighborhood is pretty tight-knit. It's pretty amazing actually. If I could, I'd move into her neighborhood it's that wonderful. Many of the women meet at least monthly, and it seems like most of them do things together much more often than that - working out together, vacationing together, etc. I have great neighbors for sure, but we aren't half as close as the neighbor's where my mom lives.
Anyway, one night every month, many of them get together to play Bunco. It's a pretty easy game to play, doesn't really require much skill - you only need to know how to roll a dice. To me, the game is really an excuse to get together, chat, eat good food, and have a good time. Not a bad way to spend one evening a month at all!
This month they invited me, along with my mom to come and join them. They all know the situation. In fact many of them have sent me cards, small gifts, and brought dinners or gift cards to us. They circle around their own and simply by being my mom's daughter, I am considered one of their own.
Anyway, Thursday night I headed on out and had a great time. It was so nice to get out and have a good time. Many laughs were had. I even won a few games. I admit Thursday I was feeling so exhausted I almost backed out of going, but I'm so glad I didn't. I had such a great time.
As a bonus, this Thursday they played for me. You have to pay a bit of money to join. Usually there are winners at the end of the night and the money is passed out t them, and also a bit goes to the hostess. This month, they played for me. At the end of the night I was gifted the money with strict orders to do something fun for myself. Very generous of them all.
It was definitely a great night out. And much more fun than just sitting around at home in my pj's ;-)
My mom's neighborhood is pretty tight-knit. It's pretty amazing actually. If I could, I'd move into her neighborhood it's that wonderful. Many of the women meet at least monthly, and it seems like most of them do things together much more often than that - working out together, vacationing together, etc. I have great neighbors for sure, but we aren't half as close as the neighbor's where my mom lives.
Anyway, one night every month, many of them get together to play Bunco. It's a pretty easy game to play, doesn't really require much skill - you only need to know how to roll a dice. To me, the game is really an excuse to get together, chat, eat good food, and have a good time. Not a bad way to spend one evening a month at all!
This month they invited me, along with my mom to come and join them. They all know the situation. In fact many of them have sent me cards, small gifts, and brought dinners or gift cards to us. They circle around their own and simply by being my mom's daughter, I am considered one of their own.
Anyway, Thursday night I headed on out and had a great time. It was so nice to get out and have a good time. Many laughs were had. I even won a few games. I admit Thursday I was feeling so exhausted I almost backed out of going, but I'm so glad I didn't. I had such a great time.
As a bonus, this Thursday they played for me. You have to pay a bit of money to join. Usually there are winners at the end of the night and the money is passed out t them, and also a bit goes to the hostess. This month, they played for me. At the end of the night I was gifted the money with strict orders to do something fun for myself. Very generous of them all.
It was definitely a great night out. And much more fun than just sitting around at home in my pj's ;-)
Monday, August 01, 2011
You Can Do It!
Today's post is by Rhonda. Rhonda is another friend I met on twitter who has been so supportive during this time!
Rhonda believes is miracles and true love. She loves to capture life in pictures and scrapbooks. She lives in Kansas with her husband Eric and their toddler Liam. Visit her blog at http://meettherobsons.
Rhonda believes is miracles and true love. She loves to capture life in pictures and scrapbooks. She lives in Kansas with her husband Eric and their toddler Liam. Visit her blog at http://meettherobsons.
She always sits in the back, she doesn’t want to be noticed. She doesn’t say much of anything, would it matter how she felt anyways? She’s doesn’t have many friends, she doesn’t want to have to explain anxiety disorder. She works hard, if she didn’t would she think people thought she was lazy due to her size? She feels like she is left out, are they judging me because of what I am not able to do? When she is mad she losses it, but if she keeps her feelings in no one will get mad if they don’t like what she says. She really isn’t herself, people have hurt her in the past and she doesn’t want a repeat of it.
Yes, that “she” is me. For so many years I wasn’t really who I wanted to be. I was in a marriage that I was afraid to get out of due to panic attacks. I let him and his family control my feelings. I wasn’t able to have an opinion. The past of me being quiet and bottled up continued through my adult years. I had no one to turn to. My family and friends thought all was good. It wasn’t. I struggled through infertility, depression, anxiety disorder, panic attacks and agoraphobia. I felt alone in my own home. My life was a hell on earth.
I went through the day to day motions. Work. Wife. I was always searching for happiness. I bought books on it. I read scriptures. Nothing to seemed to work. Happiness was no where to be found. But one day something changed. I wanted a new life. I wanted to leave my husband. Key note here, I married him because I wanted out of the house. I was 19 when we married. I thought I was in love. I thought I was happy. I was at times but deep inside I never was. I can see it not, I couldn’t then. I finally saw all the negative in my life. I needed a change but how? How does someone with panic attacks, anxiety disorder, depression and agoraphobia change the major things in her life? Slowly.
I decided to start with my weight. Over a year I lost 74 pounds by eating right and exercising. I started writing daily affirmations. I would write 10 things each day that was positive in my life. I started getting my voice back. I said what was on my mind. If something bothered me I didn’t bottle it up. Losing the weight was the first step in gaining my confidence and independence from a miserable marriage. I was seeing that I could do things once I set my mind to it. I realized then that I was in control of my happiness and what happened in my life. I was starting to win again!
To make a long story short, we separated. I met the man of my dreams. Someone that loves me for who I am. Someone that I can talk to about anything. Someone that I am not afraid to be myself to. Actually we had known each other for many years. We started dating and realized what we had for each other. About 8 months later I found out I was pregnant. After 3 loses I was afraid but my miracle came. My son is the joy of my life. We got married last year on 10/10/10! Life is what I always wanted it to be.
I am now 40. Do I look at those years as a waste? No, I needed to grow. I needed to believe in myself before my son came into my life. I need to have happiness. I strongly believe that we go through tough times to make us stronger and learn. Is it fair? No. We all have different needs and issues but what we all have in common is the need to be happy. Life is too short to be unhappy. I didn’t see that through anxious eyes. I thought I was happy when I went shopping or ate. Oh how I have learned that is so not true.
If you need a change in your life make it happen. It won’t happen right away. For me it was 5 years before I was strong enough to let it all end. I still need work on things that deal with anxiety but it is getting better. Be happy. Enjoy those everyday moments that we all take for granted. Life your live they way YOU want to. Do not let others determine your life. It is so worth coming out of your shell and seeing the world through your eyes. You can do it!
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