Those of you who know Bryce personally may think the title of this post is an oxymoron. It's true, actual conversations with Bryce are typically kind of one sided... or at least only one side can be fully understood. Bryce probably understands both sides. In some conversations all he wants to do is repeat everything you say, including any questions you ask him.
He was sitting on my lap while I was typing and then he wanted to see my collarbone where my port is located. I had showed him when I had the bandage and now he likes to look at it every now and again.
"Mom, you ok? You have a bandage?" He pulls my sweater to the side so he can see (I help because I really don't need him to touch it).
"I'm ok! I don't have a bandage anymore." Well, not really, there are still a couple steri-strips left.
"Oh, you have a bandage. You are ok, mom? You have ouchie?" He insists the steri-strips are bandages. Then of course he leans his head into my shoulder exactly where the port it and that doesn't feel so great. "I love you mom."
My sweet, typically kind of insensitive, son. I say insensitive because the few times he's been with me and I was upset/crying, like when we had to put poor Berman down, Bryce thought my crying was hilarious and laughed with every sob! It was then I realized he's not one of those kids who can sense how another person is feeling, or at least he doesn't seem to care. But the look of concern and the sound of his voice when he asks if I'm ok melts my heart. I guess there is hope for him having some compassion yet.
Saturday, February 28, 2015
Thursday, February 26, 2015
Look Good... Feel Better
On Monday night I attended a "Look Good... Feel Better" class offered by the American Cancer Society to women undergoing any kind of treatment for any kind of cancer. It's a national program and here, they hold one class per month at each of St. Luke's locations. There were two other participants at my class. I dragged Beth along with me, too, for moral support.
The first part of the class was about wigs. The presenter was Mrs. Idaho and she has worn wigs because she has an autoimmune disease that causes hair loss. I'm assuming the American Cancer Society is her platform. She explained different types of wigs, advantages and disadvantages of the various kinds. She also showed us some ideas for using scarves and things like that.
Barbara walked us through applying makeup, from moisturizing to lipstick and everything in between. Her presentations was peppered with special tips related to side effects of cancer treatment. She was quite adamant about cleanliness. Clean your makeup brushes EVERY DAY? Yeah, right! Although I decided this might be a good excuse to buy new brushes. My old ones have probably been cleaned less than five times in the last 10 years. If I lose my eyebrows, will I draw them in? Let's hope I don't have to find out. I could probably handle filling them in a little, but drawing them completely I don't see myself doing.
The best part of the whole class was all the free cosmetics. I can honestly say I came home with more stuff than I previously owned in total. Many different companies contribute to this program so I also came home with good stuff from Lancome, Mary Kay, Chanel, Avon, Smashbox... I learned that Lancome's concealer is so much better than the CoverGirl stick I've been using (which is probably designed for 15 year old skin). We also got a bottle of wig shampoo, conditioner, styling spray, and a brush. The class for totally worth it for all the complimentary gifts.
I was very impressed with the program and would recommend any woman of any age facing cancer participate. Even if you know all there is to about makeup (or like me, don't really care) it was fun to get the free products. Of course, if you were strained financially it would be really helpful in that respect. The makeup was better quality than what I am usually willing to pay for, and I don't know how much the wig products cost, but I'm sure they aren't that cheap. The presenters were both very kind and sensitive to the situation and had some useful tips.
Another thing is that it provides an opportunity to be around other women going through some of the same things you are. There wasn't a lot of sharing between those of us at this class, but I think there is value in just knowing other people have a similar plight, at the same point in time.
I am so lucky because I have been able to talk to other people who have been through this crazy cancer crap, but not everyone has that. Not everyone wants that either, although I have found it extremely helpful. I've read some other blogs where the person says they don't want to hear anyone else's cancer story. Not me... it's not a happy topic of conversation, but I find it reassuring to learn how someone else got through the hard stuff. Hearing about their experiences has made facing the unknown of mine a little less frightening.
Perhaps much of it has to do with the presentation of the other person's story. My friends all have very positive attitudes and outlooks. If they were telling me only doom and gloom and horror stories I might feel differently. Don't get me wrong, no one is telling happy cancer stories, but they are telling me real stories. Maybe it's kind of like after you, or at least after I, had a baby. Suddenly I loved to hear other women's birth stories. Now I'm interested in the cancer stories, too, although the baby stories are better!
After the wig information, the other presenter, Barbara, moved on to makeup. I have never been one to wear a lot of makeup, but I was pleasantly surprised to find out some of the tips she shared were things I already do. And many were things I don't do now and probably never will. I will admit, since I cut my hair short I do have the desire to wear a little more make-up to make sure I don't look like a boy. I'm sure that feeling will continue when I have no hair. Although it seems like tons of makeup + no hair = not good, so I'll probably stay true to my natural look (and my look gets more natural as the day goes on because the makeup always wears off). Also, when I say I'm wearing "a little more makeup" that really just means wearing eye shadow every day.
The best part of the whole class was all the free cosmetics. I can honestly say I came home with more stuff than I previously owned in total. Many different companies contribute to this program so I also came home with good stuff from Lancome, Mary Kay, Chanel, Avon, Smashbox... I learned that Lancome's concealer is so much better than the CoverGirl stick I've been using (which is probably designed for 15 year old skin). We also got a bottle of wig shampoo, conditioner, styling spray, and a brush. The class for totally worth it for all the complimentary gifts.
Another thing is that it provides an opportunity to be around other women going through some of the same things you are. There wasn't a lot of sharing between those of us at this class, but I think there is value in just knowing other people have a similar plight, at the same point in time.
I am so lucky because I have been able to talk to other people who have been through this crazy cancer crap, but not everyone has that. Not everyone wants that either, although I have found it extremely helpful. I've read some other blogs where the person says they don't want to hear anyone else's cancer story. Not me... it's not a happy topic of conversation, but I find it reassuring to learn how someone else got through the hard stuff. Hearing about their experiences has made facing the unknown of mine a little less frightening.
Perhaps much of it has to do with the presentation of the other person's story. My friends all have very positive attitudes and outlooks. If they were telling me only doom and gloom and horror stories I might feel differently. Don't get me wrong, no one is telling happy cancer stories, but they are telling me real stories. Maybe it's kind of like after you, or at least after I, had a baby. Suddenly I loved to hear other women's birth stories. Now I'm interested in the cancer stories, too, although the baby stories are better!
Wednesday, February 25, 2015
One Week Out
Yesterday I went back to have blood drawn and tested to see how all my cell counts looked. Everything looked great so that was encouraging news. My white blood cell count, which was 3.2 prior to chemo last week was up to 22. Yay! The nurse practitioner said it looked the Neulasta definitely did it's job! I don't remember the other numbers but they were all in the normal range.
The follow-up appointment went like this... check in, go back and have blood taken via my port, then meet with the nurse practitioner, then meet with the social worker, then schedule next chemo and done. There was a fair amount of waiting between most of those steps.
The nurse practitioner was nice. Among other questions, I asked if I wanted to have a glass of wine or something like that with dinner one night would that be ok? She said she wasn't sure what Dr. Bridges would say but that yes, there was really no problem with that. I laughed and said it was a good answer because I'd already confided to Beth that even if they said no, I probably would do it anyway if I really wanted one. I don't know if I'll ever even want one, but who knows I might.
We discussed any side effects I had and she said that most likely my next treatment will be similar. Hopefully that holds true because this one really went well. I said, "So I was thinking maybe since I didn't have any nausea, then maybe I might not lose my hair either." She didn't hesitate to shoot that thought down... nope, the hair will fall out, probably by my next treatment.
Apparently you just can't get around that. Although I've read (and Beth had told me about) these "cold caps" that some people use where you basically freeze your head before, during, and after the chemo session (like for hours) and often times those people don't lose their hair, or at least not as much. It's too late for me because I've already had my first treatment, and come to find out that's all it takes. Honestly, when I read more about the process, for me personally, I don't think it would worth the effort, expense, or discomfort anyway.
I am by no means looking forward to losing my hair, but I guess I am not as freaked out as I thought I might be. I'm sure when I'm holding a handful of my own hair I will, without a doubt, be freaking out very much. I'm actually kind of curious to see what a shaved head/bald me will look like. Online I've read stories from many women who don't want that outward sign of being a "cancer patient." They talk about how it is not anyone's business and they use the cold caps in hopes they can keep their hair so that no one else will know what is going on, or they find a wig that no one would ever guess wasn't the real deal.
I've come to realize I don't feel that way so much. In the beginning, I didn't really want to tell people I had cancer because it was so hard to say those words. It actually feels really awkward even now to write that sentence, but not because I don't want you to know. Maybe because I don't want it to be true. Probably because it still doesn't seem possible or real that it is true. Every time I say it or write it, in my head I think it the same way I did when I sent Beth that first text: "Oh my god I totally have {expletive} cancer!!!!??"
It is a very personal thing, but I don't see any reason it should be a secret. I have figured out that in my mind I equate secrets with things that are bad or you are ashamed of. Of course when I really think about it, there are all kinds of other reasons you might keep a secret. I can see now that I am just not a very private person. I'm an extrovert and I get my energy and work through things by talking and sharing (possibly more than I should!).
So yes, the bald head is a dead giveaway, but I'm not all that concerned about others knowing I'm a "cancer patient." The unfortunate fact is, I am. I don't care if someone overhears me on the phone in Fred Meyer talking about chemo. I don't even whisper it anymore. I'm sure there will be lots of times where I will want to go out and not feel people's eyes linger on me for longer than normal, or avert their eyes, or all the things we do when we feel uncomfortable. Krista generously passed on her very cute wigs to me, and it's pretty amazing we shared pretty much the same hair color. The style is what I wanted (but usually failed) to achieve with my own hair for years... shiny and straight with a stylish cut. It is really nice to know I have those ready to go, and they look cute on me to boot! There is another wig I've seen online and would like to try on at Kathy's Wig Boutique if they have it. It has wavy curls like my own and is pretty cute. It is also very expensive, and because I'm not even sure how often I will end up wearing a wig, plus the fact that I already have two cute ones that were free to me in my closet, it seems like it might be a waste of funds. I might have to try it on anyway... just in case. I already bought a couple cute and comfy hats and also have gotten some as gifts, too.
I try to imagine myself at work or hanging out with my friends and of course they will all know I'm bald. Who am I kidding, you know I'm totally going to show at least some of them. I wonder if it will feel weirder to know that they know that I'm wearing a wig or to just wear a hat... and not the kind that can hide the fact that I have no hair underneath? It almost seems strange now to go from this super short hair to longer hair.
Maybe that is related to why I'm pondering all of this. I already cut off my hair, and I only did it because of cancer. Beth admitted to me that after we cut it, she had a moment where she thought, oh my gosh, maybe this was a mistake, she really is sick. She has cancer and so she cut off her hair. Yep, I sure did. I don't think I'll really know how I feel about it until it's my reality. At work most people know about me... or at least I thought they did. A coworker the other day complimented my new hair cut, and I said something about how I was trying to enjoy it before it all fell out. He was totally taken aback when I explained I started chemo last week. Maybe there's not as much gossip at the office as I thought.
Anyway, back to my appointment yesterday... I also liked the social worker. She meets with all new patients and explains what her role is and other services the can provide. We talked a bit about Claire and things to kind of watch for in a child that age when you are going through something like this. I don't expect to require her counseling services (probably because of my tendency to run my mouth to anyone and everyone as mentioned above), but it's good to know it's available.
She also explained a bit more about the integrative medicine programs that are offered. If I start having any symptoms of neuropathy (tingling/numbness in fingers, toes, etc) then I am going to try acupuncture right away. She said acupuncture can even help with fatigue among many other things, so maybe at some point I will try it. I also think I need to take advantage of the discounted price massages. Get those toxins out, right! Who knows, maybe I'll do a yoga class or something like that. Those classes are free and I liked yoga when I took it before, but it was pricey. Perhaps I should try art therapy... doesn't healing through mask making sound... interesting? I would totally make Juan go with me to that one! ha ha
My next chemo will be on March 10th. That's my half-birthday (and my cousin Trevor's birthday-birthday). I will be half done!
The follow-up appointment went like this... check in, go back and have blood taken via my port, then meet with the nurse practitioner, then meet with the social worker, then schedule next chemo and done. There was a fair amount of waiting between most of those steps.
The nurse practitioner was nice. Among other questions, I asked if I wanted to have a glass of wine or something like that with dinner one night would that be ok? She said she wasn't sure what Dr. Bridges would say but that yes, there was really no problem with that. I laughed and said it was a good answer because I'd already confided to Beth that even if they said no, I probably would do it anyway if I really wanted one. I don't know if I'll ever even want one, but who knows I might.
We discussed any side effects I had and she said that most likely my next treatment will be similar. Hopefully that holds true because this one really went well. I said, "So I was thinking maybe since I didn't have any nausea, then maybe I might not lose my hair either." She didn't hesitate to shoot that thought down... nope, the hair will fall out, probably by my next treatment.
Apparently you just can't get around that. Although I've read (and Beth had told me about) these "cold caps" that some people use where you basically freeze your head before, during, and after the chemo session (like for hours) and often times those people don't lose their hair, or at least not as much. It's too late for me because I've already had my first treatment, and come to find out that's all it takes. Honestly, when I read more about the process, for me personally, I don't think it would worth the effort, expense, or discomfort anyway.
I am by no means looking forward to losing my hair, but I guess I am not as freaked out as I thought I might be. I'm sure when I'm holding a handful of my own hair I will, without a doubt, be freaking out very much. I'm actually kind of curious to see what a shaved head/bald me will look like. Online I've read stories from many women who don't want that outward sign of being a "cancer patient." They talk about how it is not anyone's business and they use the cold caps in hopes they can keep their hair so that no one else will know what is going on, or they find a wig that no one would ever guess wasn't the real deal.
I've come to realize I don't feel that way so much. In the beginning, I didn't really want to tell people I had cancer because it was so hard to say those words. It actually feels really awkward even now to write that sentence, but not because I don't want you to know. Maybe because I don't want it to be true. Probably because it still doesn't seem possible or real that it is true. Every time I say it or write it, in my head I think it the same way I did when I sent Beth that first text: "Oh my god I totally have {expletive} cancer!!!!??"
It is a very personal thing, but I don't see any reason it should be a secret. I have figured out that in my mind I equate secrets with things that are bad or you are ashamed of. Of course when I really think about it, there are all kinds of other reasons you might keep a secret. I can see now that I am just not a very private person. I'm an extrovert and I get my energy and work through things by talking and sharing (possibly more than I should!).
So yes, the bald head is a dead giveaway, but I'm not all that concerned about others knowing I'm a "cancer patient." The unfortunate fact is, I am. I don't care if someone overhears me on the phone in Fred Meyer talking about chemo. I don't even whisper it anymore. I'm sure there will be lots of times where I will want to go out and not feel people's eyes linger on me for longer than normal, or avert their eyes, or all the things we do when we feel uncomfortable. Krista generously passed on her very cute wigs to me, and it's pretty amazing we shared pretty much the same hair color. The style is what I wanted (but usually failed) to achieve with my own hair for years... shiny and straight with a stylish cut. It is really nice to know I have those ready to go, and they look cute on me to boot! There is another wig I've seen online and would like to try on at Kathy's Wig Boutique if they have it. It has wavy curls like my own and is pretty cute. It is also very expensive, and because I'm not even sure how often I will end up wearing a wig, plus the fact that I already have two cute ones that were free to me in my closet, it seems like it might be a waste of funds. I might have to try it on anyway... just in case. I already bought a couple cute and comfy hats and also have gotten some as gifts, too.
I try to imagine myself at work or hanging out with my friends and of course they will all know I'm bald. Who am I kidding, you know I'm totally going to show at least some of them. I wonder if it will feel weirder to know that they know that I'm wearing a wig or to just wear a hat... and not the kind that can hide the fact that I have no hair underneath? It almost seems strange now to go from this super short hair to longer hair.
Maybe that is related to why I'm pondering all of this. I already cut off my hair, and I only did it because of cancer. Beth admitted to me that after we cut it, she had a moment where she thought, oh my gosh, maybe this was a mistake, she really is sick. She has cancer and so she cut off her hair. Yep, I sure did. I don't think I'll really know how I feel about it until it's my reality. At work most people know about me... or at least I thought they did. A coworker the other day complimented my new hair cut, and I said something about how I was trying to enjoy it before it all fell out. He was totally taken aback when I explained I started chemo last week. Maybe there's not as much gossip at the office as I thought.
Anyway, back to my appointment yesterday... I also liked the social worker. She meets with all new patients and explains what her role is and other services the can provide. We talked a bit about Claire and things to kind of watch for in a child that age when you are going through something like this. I don't expect to require her counseling services (probably because of my tendency to run my mouth to anyone and everyone as mentioned above), but it's good to know it's available.
She also explained a bit more about the integrative medicine programs that are offered. If I start having any symptoms of neuropathy (tingling/numbness in fingers, toes, etc) then I am going to try acupuncture right away. She said acupuncture can even help with fatigue among many other things, so maybe at some point I will try it. I also think I need to take advantage of the discounted price massages. Get those toxins out, right! Who knows, maybe I'll do a yoga class or something like that. Those classes are free and I liked yoga when I took it before, but it was pricey. Perhaps I should try art therapy... doesn't healing through mask making sound... interesting? I would totally make Juan go with me to that one! ha ha
My next chemo will be on March 10th. That's my half-birthday (and my cousin Trevor's birthday-birthday). I will be half done!
Sunday, February 22, 2015
Post Chemo: Day 4-5-6
Knock on wood... still no nausea. I'm hoping enough days have gone by now that I will only start to feel better and better. I did end up getting my prescription filled on Friday (the anti-nausea medication) but thankfully I haven't needed it. Tomorrow is Monday, so back to work and school.
It's really weird being on alert for all these different things you might, or might not, feel. I've definitely had less energy. My body has ached some, mostly in my hips which happened when I was pregnant with Bryce. Also my shoulders and jaw, every once in a while my fingers or something weird like that. My chest/throat has been sore or tight, I'm not sure how to describe it. I really notice it if I have to cough or take a deep breath. That is probably what has bothered me the most. I've noticed my pulse is racing a few times and I can feel the blood pounding through my veins more than normal. My mouth/tongue has felt a little weird and some things have not tasted normal.
All of it has been so mild though, that I sometimes wonder if it's more in my head than anything. That I'm expecting to feel bad, and so I do. I did wake up this morning and thought, "I feel pretty normal today." That made me realize I was probably feeling worse these last couple days than I was willing to admit. Either way, I am not going to complain about it! I even felt good enough to go to Claire's basketball game yesterday. Although when we tried to go to breakfast and everywhere had a wait time, my emotions got the best of me and I just wanted to go home and rest.
I've been drinking tons of water everyday. They told me to drink at least 2 liters of water for 48 hours following the treatment, because it helps flush the chemicals out of your system. I drank plenty more than that and have kept it up everyday since. I have several bottles in the fridge so I drink one, refill it and move on to the next. That way I always have cold water (I like it cold!).
I've also tried to go for a walk or at least get outside everyday. We've had lots of sunshine so that has been nice and makes it easier to want to go outside. At Christmas, Juan's parents gave us this book called Aging Backwards. We had to laugh when we saw the title that it was a not-so-subtle hint we were getting old... of course I guess we also have to face reality and we are both pushing 40, so we decided to not take offense.
I was definitely skeptical based on the title, but now that I've read it I actually buy into most of it. Not because it's some radical new miracle that stops or reverses aging, but rather common sense. The main tenet of the book is that by keeping your body flexible and strong you can avoid, or at least delay, many of the complaints that go along with getting older (stiffness, aches and pains, injuries, weight gain). Also the author, (who created the PBS program Classical Stretch) is a former ballerina and many of her exercises are meant to work toward that lovely "dancer body" which I would love to have. When Claire was in dance last year I kept thinking how I wanted a long, lean, flexible and graceful body like her teacher. The exercises are mostly stretching sequences and at some point I'll look at those a bit closer. For now walking seems the best way to go.
But why am I writing this all down. Get to the point. The point is there is all this information in the book about the cells in our body. How they work and how keeping them healthy and active keeps our whole being that way. I've never been one to think about my body as a collection of cells. After I found out I had breast cancer cells in my body (not anymore though I hope!) we talked about the cells in our body quite a bit in our house.
Our cells, and in particular our muscle cells, are powered by mitochondria and according to the book "movement activates the mitochondria." By keeping active, you increase the amount of mitochondria which in turn creates more energy and keeps cells healthier, longer. If you don't "feed" your cells with mitochondria, they begin to atrophy and die. So, I figure by trying to take a walk and be somewhat active everyday it's going to make all my cells more healthy and strong. And since I'm doing chemo drugs which are killing plenty of my cells (or trying to) I need to do that more than ever!
We also had some fun visitors this weekend. Manibhu and her family were in town for a quick visit. Baby Esme is so sweet. It was wonderful to get to see them. Hopefully next time I'll feel more up to playing with this cute girl.
Things I am extra thankful for right now... Dawn bringing yummy soup for dinner, Beth & Stephanie helping to fold and put away my laundry, Manibhu's visit (not to mention doing my dishes), Juan watching a movie with the kids, not feeling sick, a new hot water heater that makes for a relaxing hot bath.
It's really weird being on alert for all these different things you might, or might not, feel. I've definitely had less energy. My body has ached some, mostly in my hips which happened when I was pregnant with Bryce. Also my shoulders and jaw, every once in a while my fingers or something weird like that. My chest/throat has been sore or tight, I'm not sure how to describe it. I really notice it if I have to cough or take a deep breath. That is probably what has bothered me the most. I've noticed my pulse is racing a few times and I can feel the blood pounding through my veins more than normal. My mouth/tongue has felt a little weird and some things have not tasted normal.
All of it has been so mild though, that I sometimes wonder if it's more in my head than anything. That I'm expecting to feel bad, and so I do. I did wake up this morning and thought, "I feel pretty normal today." That made me realize I was probably feeling worse these last couple days than I was willing to admit. Either way, I am not going to complain about it! I even felt good enough to go to Claire's basketball game yesterday. Although when we tried to go to breakfast and everywhere had a wait time, my emotions got the best of me and I just wanted to go home and rest.
I've been drinking tons of water everyday. They told me to drink at least 2 liters of water for 48 hours following the treatment, because it helps flush the chemicals out of your system. I drank plenty more than that and have kept it up everyday since. I have several bottles in the fridge so I drink one, refill it and move on to the next. That way I always have cold water (I like it cold!).
I was definitely skeptical based on the title, but now that I've read it I actually buy into most of it. Not because it's some radical new miracle that stops or reverses aging, but rather common sense. The main tenet of the book is that by keeping your body flexible and strong you can avoid, or at least delay, many of the complaints that go along with getting older (stiffness, aches and pains, injuries, weight gain). Also the author, (who created the PBS program Classical Stretch) is a former ballerina and many of her exercises are meant to work toward that lovely "dancer body" which I would love to have. When Claire was in dance last year I kept thinking how I wanted a long, lean, flexible and graceful body like her teacher. The exercises are mostly stretching sequences and at some point I'll look at those a bit closer. For now walking seems the best way to go.
But why am I writing this all down. Get to the point. The point is there is all this information in the book about the cells in our body. How they work and how keeping them healthy and active keeps our whole being that way. I've never been one to think about my body as a collection of cells. After I found out I had breast cancer cells in my body (not anymore though I hope!) we talked about the cells in our body quite a bit in our house.
Our cells, and in particular our muscle cells, are powered by mitochondria and according to the book "movement activates the mitochondria." By keeping active, you increase the amount of mitochondria which in turn creates more energy and keeps cells healthier, longer. If you don't "feed" your cells with mitochondria, they begin to atrophy and die. So, I figure by trying to take a walk and be somewhat active everyday it's going to make all my cells more healthy and strong. And since I'm doing chemo drugs which are killing plenty of my cells (or trying to) I need to do that more than ever!
We also had some fun visitors this weekend. Manibhu and her family were in town for a quick visit. Baby Esme is so sweet. It was wonderful to get to see them. Hopefully next time I'll feel more up to playing with this cute girl.
Thursday, February 19, 2015
Post Chemo: Day 3
Another day and I'm still feeling relatively good. I was more tired today and a little achy, but not bad enough to need to take anything for it (other than I'm taking my Claritin for a couple more days). I haven't had any nausea yet and most food I've had still tastes good.
I do feel a little "off"... like not quite normal but can't really describe it. Still drinking lots and lots and lots of water. Also I've been rinsing my mouth often with a salt and baking soda rinse that was suggested to prevent sores in my mouth. I have a nice bottle of it ready to go at my sink.
A nurse from MSTI called today to say she'd talked to my insurance and the approval for the nausea medication is still in the works. They told her it could take up to two days. (They are missing my sense of urgency here! But honestly, I can't complain, as far as insurance companies go, they have been awesome through all of this, so I will forgive this small issue!).
Since I still feel ok, the nurse will call me tomorrow and if the approval hasn't come in I will get a small supply so that I am prepared before the weekend. Of course I also have the stronger of the two anti-nausea meds already on hand, so I could always take that if absolutely necessary, too. It makes no sense... why they wouldn't have any problem filling that prescription but this other one (which is also cheaper) is the slow one. The nurse said it was great I wasn't having nausea yet and maybe I would be one of the really lucky ones who doesn't get it. That would be nice! I still want to be prepared just in case though.
I'm not working tomorrow and I think that will be ok so I can get some extra rest. I think there will be lots of resting this weekend. We will also have some fun visitors, as Manibhu, Clay and Miss Esme are going to be in town. I can't wait to snuggle that baby and see all the tricks she's learned in the last 6 months!
I do feel a little "off"... like not quite normal but can't really describe it. Still drinking lots and lots and lots of water. Also I've been rinsing my mouth often with a salt and baking soda rinse that was suggested to prevent sores in my mouth. I have a nice bottle of it ready to go at my sink.
A nurse from MSTI called today to say she'd talked to my insurance and the approval for the nausea medication is still in the works. They told her it could take up to two days. (They are missing my sense of urgency here! But honestly, I can't complain, as far as insurance companies go, they have been awesome through all of this, so I will forgive this small issue!).
Since I still feel ok, the nurse will call me tomorrow and if the approval hasn't come in I will get a small supply so that I am prepared before the weekend. Of course I also have the stronger of the two anti-nausea meds already on hand, so I could always take that if absolutely necessary, too. It makes no sense... why they wouldn't have any problem filling that prescription but this other one (which is also cheaper) is the slow one. The nurse said it was great I wasn't having nausea yet and maybe I would be one of the really lucky ones who doesn't get it. That would be nice! I still want to be prepared just in case though.
I'm not working tomorrow and I think that will be ok so I can get some extra rest. I think there will be lots of resting this weekend. We will also have some fun visitors, as Manibhu, Clay and Miss Esme are going to be in town. I can't wait to snuggle that baby and see all the tricks she's learned in the last 6 months!
Wednesday, February 18, 2015
Post Chemo: Day 2
Dr. Bridges said chemo day is "Day 1" so now I've just about made it through Day 2 now. I'm still feeling good, which is what the doctor, nurses, and pharmacist all predicted. Dr. Bridges said Day 4 is likely the first real down day on this regimen. The nurses and pharmacist all said it could be sooner than that though. Wait and see... how many times am I going to type those words?
I had my first Neulasta shot this afternoon. That went well, and I could barely feel it. The nurse who gave me the shot had some more good ideas about dealing with nausea (mint or ginger flavored water, hard candies, etc) and starting to take a probiotic since the chemo drugs are going to kill all the "good" stuff in my gut. Teresa, my nurse from yesterday also stopped to say hello and ask how I was doing. I was a little tired when I came home and so I did lay down and rest for a a bit before getting Bryce. Dawn and I had planned to take a walk (sans children) this evening but time kind of slipped away from us so hopefully tomorrow.
I think I've drank almost 5 liters (or more) of water today.
Is it possible I could have chemo-brain already? No, I really don't think so, it's probably just more like one-million-things-on-your-mind brain, but today I sent a text to Beth in which I misspelled pretty much every single word (I blame auto-correct!), then I didn't get in the turn lane to go the hospital for my shot and had to turn around (I was talking to my grandma at the time), and then I put my pajamas on backwards and didn't even notice for several minutes (I have absolutely no excuse, although I will admit, it's actually not the first time). We decided Juan has it too... he took Claire to the bus stop 15 minutes late and thus had to drive her to school (she was still on time though).
I still don't have my prescription for the Zofran, I called the pharmacy who said they hadn't heard back from the doctor, so I called MSTI. The nurse who called me back said the hold up is getting pre-authorization from my insurance company. Everything has been submitted, so now we are just waiting for them. She said not to worry, it will definitely be authorized since, after all, I am going through chemo. No question it is medically necessary. However, sometimes they aren't as speedy as you would hope. As a back-up plan if they still haven't come through tomorrow I can get a starter dose of pills through the MSTI pharmacy for about $1 per pill so I could at least have a few on hand so I'm prepared.
My port spot is a little sore, mostly just if I move in certain ways (note to self: stop folding clothes). I suppose it's from having the needle in it yesterday and also that it hasn't even been in there a week so everything is still healing. Also, I may have forgot and picked up a very adorable 3-year-old once or twice, but I'm trying not to do that. (I'm not supposed to be lifting anything for 7-10 days. I'm close to the 7 day mark at least.) This is where my port is, still under the steri-strips. You can't really see it in the picture but there is definitely a freaky bump. Juan says it is much larger than a microchip and I suppose he is correct. It feels really weird to touch so I try not to do that. I'm sure after a few more days it will start feeling more and more normal.
Here are a couple more pictures from chemo yesterday. MSTI is located in the basement of St. Luke's Meridian and I was surprised to see that they have a large bank of east-facing windows across the chemo area. The natural light is really nice, especially since the sun was shining!
I had my first Neulasta shot this afternoon. That went well, and I could barely feel it. The nurse who gave me the shot had some more good ideas about dealing with nausea (mint or ginger flavored water, hard candies, etc) and starting to take a probiotic since the chemo drugs are going to kill all the "good" stuff in my gut. Teresa, my nurse from yesterday also stopped to say hello and ask how I was doing. I was a little tired when I came home and so I did lay down and rest for a a bit before getting Bryce. Dawn and I had planned to take a walk (sans children) this evening but time kind of slipped away from us so hopefully tomorrow.
I think I've drank almost 5 liters (or more) of water today.
Is it possible I could have chemo-brain already? No, I really don't think so, it's probably just more like one-million-things-on-your-mind brain, but today I sent a text to Beth in which I misspelled pretty much every single word (I blame auto-correct!), then I didn't get in the turn lane to go the hospital for my shot and had to turn around (I was talking to my grandma at the time), and then I put my pajamas on backwards and didn't even notice for several minutes (I have absolutely no excuse, although I will admit, it's actually not the first time). We decided Juan has it too... he took Claire to the bus stop 15 minutes late and thus had to drive her to school (she was still on time though).
I still don't have my prescription for the Zofran, I called the pharmacy who said they hadn't heard back from the doctor, so I called MSTI. The nurse who called me back said the hold up is getting pre-authorization from my insurance company. Everything has been submitted, so now we are just waiting for them. She said not to worry, it will definitely be authorized since, after all, I am going through chemo. No question it is medically necessary. However, sometimes they aren't as speedy as you would hope. As a back-up plan if they still haven't come through tomorrow I can get a starter dose of pills through the MSTI pharmacy for about $1 per pill so I could at least have a few on hand so I'm prepared.
My port spot is a little sore, mostly just if I move in certain ways (note to self: stop folding clothes). I suppose it's from having the needle in it yesterday and also that it hasn't even been in there a week so everything is still healing. Also, I may have forgot and picked up a very adorable 3-year-old once or twice, but I'm trying not to do that. (I'm not supposed to be lifting anything for 7-10 days. I'm close to the 7 day mark at least.) This is where my port is, still under the steri-strips. You can't really see it in the picture but there is definitely a freaky bump. Juan says it is much larger than a microchip and I suppose he is correct. It feels really weird to touch so I try not to do that. I'm sure after a few more days it will start feeling more and more normal.
This is my nurse Teresa hooking up one of the drugs in her protective gear. It's dangerous for the drugs to come in contact with skin. Now just think what the means about having them INSIDE your veins! As long as they kill any lurking cancer, I will consider it worth the while.
Tuesday, February 17, 2015
Chemo #1
I am officially a chemo virgin no more. I think I would have preferred to remain one forever, but what can you do? Everything went went well today and I'm really just feeling normal at this point.
We went down to MSTI and to check in and then I had to wait just a little bit for a nurse to take me back to have blood drawn. My nurse's name was Teresa and she was very nice. She led me to a chair and I told her that I had been told after my port surgery on Friday to leave my bandage on and let them remove it at MSTI and take this numbing cream with me. "Oh no!" she said. "I can't believe they told you that! I am so sorry, this is probably going to hurt because the cream takes at least an hour so we can't use it." There was another patient in the next chair over who also commented how it was to bad (side note... she looked really familiar but I couldn't place her). Beth and I decided Dr. Livingston, as a surgeon, is way more concerned about risking an infection than feeling a little pain with the needle stick and thus wanted the bandages left on.
"It will be ok. I can be tough," I said. I was so happy that Krista had shared her experience and how they did not even prescribe her the numbing cream, and in the end she never used it and it was always just fine. Thanks to that piece of knowledge, I knew I should be able to handle it! The nurse said she would count to three and I should take a deep breath on three. I did and honestly, it didn't really hurt. Maybe a little pinch and then was fine. I closed my eyes and wasn't even sure when she was all done because she was speedy! When I opened them, she already had the two vials of blood in her hand. Then she flushed the port with heparin which prevents clotting.
While the nurse was doing all that she mentioned that she had just "celebrated" her 12th anniversary of finishing chemo. Won't it be wonderful when I am there! Then it was back to the waiting room while they tested the blood sample for white blood cell count, platelet count, and red blood cells (maybe other things too, I'm not sure). Before every appointment I also get this sheet to review and they say to make sure to answer these four questions. I guess I'm not feeling overly distressed so that is good. How can one not at least feel a little nervous before starting chemo though so I had to give that one a score at least.
Before long they called me back again. A nurse weighed me, and then I met with Dr. Bridges and his nurse Andrea. "Alright, what questions do you have?" he asked. I had written out a list of questions last night so I just went down the list. I wasn't even shy to ask any of them. His answers all inspired confidence and trust which was good! We reviewed the results of my blood test... all looked good even though my WBC count was a little low (3.2 when ideally it would have been at least 3.5). It wasn't low enough to cause any issues for my treatment plan of the day and he really didn't know any reason it would be lower than it was back in November when I had it tested (and it was normal). Once he confirmed I could do the treatment today, he wrote out the order/prescription of my chemo drugs and I had to sign a consent form.
The next step was going back to the waiting area. It didn't talk too long before Teresa returned to call me back. This was it! I picked a recliner chair (they have chairs or beds) kind of in the center of the infusion center. From my seat I could see though this glass box/window into the pharmacy. I could see the pharmacist, in full protective gear, putting the drugs in plastic bins in the window where the nurses then accessed them. She hooked me up to a bag of saline right away.
There was quite a bit of waiting once I was back there. They do what I dubbed a 300% review... the nurse also reviewed my blood work and signed off it. After she did that, the pharmacist did another review before preparing the drugs. That part took the longest. They said the first time is typically the longest.
While I was waiting the woman who looked familiar while I was getting my blood drawn got set up in the chair next to me. There is plenty of space between the chairs so it's not awkward to be with a stranger but close enough you could say hello. I'd realized why she looked familiar and was 95% sure that she was another mom from Claire's old preschool. I asked if she had a daughter who'd gone to Primary Colors and sure enough it was her. I only remembered her because her daughter looks exactly like her. It's a small world! She asked if this was my first treatment and said this was her second. I asked how many she was going to have. Twelve. Then I wished I hadn't asked because I didn't want to tell her I only have to do four. Lucky for me she didn't ask.
Teresa came back over and was able to get my "pre-meds" started. A small square bag that contained an antinausea medication and a steroid (to lessen the chance of a reaction).
While I got the pre-meds, a friendly (and quite chatty) chaplain came over to introduce herself. She was nice and didn't talk about religion or anything like that. The closest she came was saying how we have to care for ourselves physically, emotionally, and spiritually and the importance of a support network. It was verified once again how fortunate I am to have a strong group of friends and family supporting me. It made me a little sad when she asked about my family and I had to think about them being far away. Of course then I had to say how I actually do have family just a few houses down from mine, plus my sister, plus lots and lots of friends so then I perked back up.
Around the time I finished talking to the chaplain, another woman came in with a black lab who was wearing a visor, a John Deere bandana, and a sparkly lanyard complete with a St. Luke's-issue photo identification badge. A therapy dog. The dog was kind of wimpering and whining. Beth and I were pretty sure it was a little annoyed it had been forced to wear a visor in the print of a dairy cow among other things. A little later, the lady brought the dog (Patches) over to meet me and showed me some tricks it can do. I like dogs ok so I scratched her ears. I mentioned that Beth is allergic so it was easy to get them to move on to the next patient rather quickly. I have a "therapy cat" at home and I think that will suffice for me (as long as it doesn't attack me!).
At some point they had gotten the green light for my chemo drugs from the pharmacist. Teresa put on her protective gear (a disposable blue gown and of course gloves) and brought a plastic bin with a a large ziploc bag in it which contained the first bag of drugs. The Taxotere (the one that the first sentence on the info sheet says "...may cause death..." in big bold letters. She said in her years as an oncology nurse she'd never seen anyone have a reaction to it, but it was possible and told me things to be on alert for. Before she administered it a second nurse came over. I had to verify my name and birth date with her before they actually started the infusion.
The pharmacist came out to talk to me about my chemo drugs and also about the drugs to combat the side effects. I have three prescriptions... the steroid which going forward I will take some pills the day before, of, and after treatment. A nausea medication (Zofran) that I'm supposed to take at the first sign of nausea. Another, stronger nausea medication that hopefully I won't need because it has it's own list of side effects I'd like to avoid, but it's good to know it's there if I need it.
They only administer one bag of chemo at a time. Both of mine take about about an hour. When I finished the Taxotere, Teresa came back in all her gear with another bin that had the Cytoxan. Mostly Beth and I chatted away (Juan had to leave for a meeting). I read various texts from people wishing me luck and sending positive energy to me today - thank you everyone! Hearing from you really meant a lot! I ate some snacks and eventually lunch, and drank multiple water bottles (and some Diet Pepsi from the snack bar/kitchen too ha ha). Two hours later my bags had both been emptied and I was free to go.
Beth drove me home and I felt pretty normal. I have noticed a weird taste in myself which was to be expected, but it's not bad and I was able to eat with no problems. I did have one cheese stick/cracker thing of Claire's that tasted terrible, but it's that nasty fake cheese which really tastes pretty bad all the time. They had said I might have lots of energy and not be able to sleep well these next couple nights due to the steroid. I've been drinking tons of water. Bryce, Dawn, Charlie, and I took a "walk" (with those two kids it's kind of difficult) and the sun was shining so that was nice.
I drove to Fred Meyer to pick up my prescriptions. Unfortunately, my insurance didn't like the way the Zofran prescription was written. The pharmacy called the doctor's office so he could re-write to the their liking and I should be able to pick it up tomorrow. Luckily, no one thought I would need it until Thursday or Friday. Back home, I met Claire at the bus stop. She read me a book and I did dozed off a little in her bed under the electric blanket. Juan took Claire to basketball practice and I bathed Bruce and got him ready for bed.
A pretty normal day, aside from the fact I have toxic chemicals coursing through my system! I'll just keep drinking more water to flush them out!
As I've been trying to prepare myself for the experience of this first chemo I have come up with this bomb analogy. Like I'm holding a bomb that doesn't have a set timer that I can watch tick down, but I know it's going to go off. I don't know exactly how it will make me feel, although I have some educated guesses. I don't know exactly when it will explode, but I know it will happen. It's a weird feeling. Hopefully it won't be as bad as I might expect. Even though I've been told a few times now that they expect I will tolerate this chemo well, it seems pretty evident that I will feel something that is not normal for me. They wouldn't spend so much telling you about it if not. So more waiting... more wondering. Tomorrow I'm planning to go to work and probably on Thursday, too. My goal is to get my hours all in before Friday so that if I don't feel up to working I won't have to and also won't have to use vacation time. (Yeah, thanks Red Cross for changing our time off policies [for the worse] exactly 9 days prior to being diagnosed with cancer. I will save that rant for another day.)
{What's Next} Tomorrow I have to go back to MSTI to get my Neulasta shot (to boost the WBC). I started taking my Claritin for the next five days which is supposed to help with the bone pain the shot can cause.
On Monday, I'm going to participate in a "Look Good... Feel Better" class where they will give tips and advice about hair loss and skin changes. You get free make-up (Mary Kay, I think) so that should make it worthwhile.
Next Tuesday, I will go back to have blood drawn again so they can see what effect this treatment had on my various blood cell counts. They know they will go down, and we'll find out how much. If adjustments need to be made for the next time, they can. At that appointment they will schedule my next treatment. This will be good because by then I will have an idea how many days after treatment I start to not feel well and if I want to move to a different day of the week I can.
I was scheduled to check-in at 8:30 am. It literally took us about 2 minutes to get there. That is really nice. Beth got stuck at the light on Eagle Road for like 10 minutes, so it depends which direction you are coming from! Upon arrival I was more excited than I should have been to see that the doors at the main entrance were all working again. Every time I've been there since back in November, two of the four doors were out of order. Why? It really bothered me that they hadn't fixed these doors for nearly 3 months. Finally today all four were functioning.
"It will be ok. I can be tough," I said. I was so happy that Krista had shared her experience and how they did not even prescribe her the numbing cream, and in the end she never used it and it was always just fine. Thanks to that piece of knowledge, I knew I should be able to handle it! The nurse said she would count to three and I should take a deep breath on three. I did and honestly, it didn't really hurt. Maybe a little pinch and then was fine. I closed my eyes and wasn't even sure when she was all done because she was speedy! When I opened them, she already had the two vials of blood in her hand. Then she flushed the port with heparin which prevents clotting.
While the nurse was doing all that she mentioned that she had just "celebrated" her 12th anniversary of finishing chemo. Won't it be wonderful when I am there! Then it was back to the waiting room while they tested the blood sample for white blood cell count, platelet count, and red blood cells (maybe other things too, I'm not sure). Before every appointment I also get this sheet to review and they say to make sure to answer these four questions. I guess I'm not feeling overly distressed so that is good. How can one not at least feel a little nervous before starting chemo though so I had to give that one a score at least.
The next step was going back to the waiting area. It didn't talk too long before Teresa returned to call me back. This was it! I picked a recliner chair (they have chairs or beds) kind of in the center of the infusion center. From my seat I could see though this glass box/window into the pharmacy. I could see the pharmacist, in full protective gear, putting the drugs in plastic bins in the window where the nurses then accessed them. She hooked me up to a bag of saline right away.
While I was waiting the woman who looked familiar while I was getting my blood drawn got set up in the chair next to me. There is plenty of space between the chairs so it's not awkward to be with a stranger but close enough you could say hello. I'd realized why she looked familiar and was 95% sure that she was another mom from Claire's old preschool. I asked if she had a daughter who'd gone to Primary Colors and sure enough it was her. I only remembered her because her daughter looks exactly like her. It's a small world! She asked if this was my first treatment and said this was her second. I asked how many she was going to have. Twelve. Then I wished I hadn't asked because I didn't want to tell her I only have to do four. Lucky for me she didn't ask.
Teresa came back over and was able to get my "pre-meds" started. A small square bag that contained an antinausea medication and a steroid (to lessen the chance of a reaction).
While I got the pre-meds, a friendly (and quite chatty) chaplain came over to introduce herself. She was nice and didn't talk about religion or anything like that. The closest she came was saying how we have to care for ourselves physically, emotionally, and spiritually and the importance of a support network. It was verified once again how fortunate I am to have a strong group of friends and family supporting me. It made me a little sad when she asked about my family and I had to think about them being far away. Of course then I had to say how I actually do have family just a few houses down from mine, plus my sister, plus lots and lots of friends so then I perked back up.
Around the time I finished talking to the chaplain, another woman came in with a black lab who was wearing a visor, a John Deere bandana, and a sparkly lanyard complete with a St. Luke's-issue photo identification badge. A therapy dog. The dog was kind of wimpering and whining. Beth and I were pretty sure it was a little annoyed it had been forced to wear a visor in the print of a dairy cow among other things. A little later, the lady brought the dog (Patches) over to meet me and showed me some tricks it can do. I like dogs ok so I scratched her ears. I mentioned that Beth is allergic so it was easy to get them to move on to the next patient rather quickly. I have a "therapy cat" at home and I think that will suffice for me (as long as it doesn't attack me!).
The pharmacist came out to talk to me about my chemo drugs and also about the drugs to combat the side effects. I have three prescriptions... the steroid which going forward I will take some pills the day before, of, and after treatment. A nausea medication (Zofran) that I'm supposed to take at the first sign of nausea. Another, stronger nausea medication that hopefully I won't need because it has it's own list of side effects I'd like to avoid, but it's good to know it's there if I need it.
They only administer one bag of chemo at a time. Both of mine take about about an hour. When I finished the Taxotere, Teresa came back in all her gear with another bin that had the Cytoxan. Mostly Beth and I chatted away (Juan had to leave for a meeting). I read various texts from people wishing me luck and sending positive energy to me today - thank you everyone! Hearing from you really meant a lot! I ate some snacks and eventually lunch, and drank multiple water bottles (and some Diet Pepsi from the snack bar/kitchen too ha ha). Two hours later my bags had both been emptied and I was free to go.
Beth drove me home and I felt pretty normal. I have noticed a weird taste in myself which was to be expected, but it's not bad and I was able to eat with no problems. I did have one cheese stick/cracker thing of Claire's that tasted terrible, but it's that nasty fake cheese which really tastes pretty bad all the time. They had said I might have lots of energy and not be able to sleep well these next couple nights due to the steroid. I've been drinking tons of water. Bryce, Dawn, Charlie, and I took a "walk" (with those two kids it's kind of difficult) and the sun was shining so that was nice.
I drove to Fred Meyer to pick up my prescriptions. Unfortunately, my insurance didn't like the way the Zofran prescription was written. The pharmacy called the doctor's office so he could re-write to the their liking and I should be able to pick it up tomorrow. Luckily, no one thought I would need it until Thursday or Friday. Back home, I met Claire at the bus stop. She read me a book and I did dozed off a little in her bed under the electric blanket. Juan took Claire to basketball practice and I bathed Bruce and got him ready for bed.
A pretty normal day, aside from the fact I have toxic chemicals coursing through my system! I'll just keep drinking more water to flush them out!
As I've been trying to prepare myself for the experience of this first chemo I have come up with this bomb analogy. Like I'm holding a bomb that doesn't have a set timer that I can watch tick down, but I know it's going to go off. I don't know exactly how it will make me feel, although I have some educated guesses. I don't know exactly when it will explode, but I know it will happen. It's a weird feeling. Hopefully it won't be as bad as I might expect. Even though I've been told a few times now that they expect I will tolerate this chemo well, it seems pretty evident that I will feel something that is not normal for me. They wouldn't spend so much telling you about it if not. So more waiting... more wondering. Tomorrow I'm planning to go to work and probably on Thursday, too. My goal is to get my hours all in before Friday so that if I don't feel up to working I won't have to and also won't have to use vacation time. (Yeah, thanks Red Cross for changing our time off policies [for the worse] exactly 9 days prior to being diagnosed with cancer. I will save that rant for another day.)
{What's Next} Tomorrow I have to go back to MSTI to get my Neulasta shot (to boost the WBC). I started taking my Claritin for the next five days which is supposed to help with the bone pain the shot can cause.
On Monday, I'm going to participate in a "Look Good... Feel Better" class where they will give tips and advice about hair loss and skin changes. You get free make-up (Mary Kay, I think) so that should make it worthwhile.
Next Tuesday, I will go back to have blood drawn again so they can see what effect this treatment had on my various blood cell counts. They know they will go down, and we'll find out how much. If adjustments need to be made for the next time, they can. At that appointment they will schedule my next treatment. This will be good because by then I will have an idea how many days after treatment I start to not feel well and if I want to move to a different day of the week I can.
Monday, February 16, 2015
I Have Been Microchipped
I kind of feel like I've been microchipped after getting my port put in on Friday. I still have a bandage over it so I can't really see what it looks like but I can feel it and it's weird.
I didn't sleep very well the night before my procedure. I think it was a combination of having just chopped off my all my hair and knowing I was going to the hospital in the morning. I went out to the living room and watched the final episode of Project Runway Allstars around 3 am (Dmitry won). We got to the hospital dark and early to check in at 5:30 am. Juan and Beth were my "village" for this surgery. The lady at check-in even remembered us which was surprising. I didn't have to wait very long before they took me back to pre-op.
The first thing they did after weighing me was tell me I had to take a pregnancy test. I was worried I wouldn't be able to pee since I hadn't drank any water since last night. I had heard about other women having to take a pregnancy test prior to surgery, but I actually didn't have to do it before my lumpectomy although they asked me multiple times if I could be pregnant. I mentioned that to the nurse and he said that just last week they implemented a new policy that all women under age 55 (I think) have to take a test prior to any surgery.
I was distracted about not being able to get a sample and then I realized there was pretty much no way I could be pregnant (in addition to the fact my husband had a little surgery to prevent it a couple years ago). I popped out and told the nurse, I don't think this is really necessary because I'm, well, you know... the thing that girls do (well at least before they have chemo-induced menopause). He said it didn't matter, I still had to try. Low and behold I had success, and to no one's surprise, I'm officially not pregnant.
Then the nurse took me over to my "room" for the next couple hours. First, I had to change into a gown. Again they wanted me to take everything off. This was an issue for me because of what I mentioned above. I was hoping they'd let me at least keep my underwear on. Nope. They kindly gave me a pair of operating-room-approved mesh undies (just like after you have a baby) and a maxi-pad that was about 10 inches long and 2 inches thick. Thank goodness I didn't need that... I politely said I had something that might be more comfortable (smaller than a mattress) and luckily that was ok.
I wasn't nervous about this surgery, but I felt kind of out of sorts. After the nurse left and closed the curtain I started crying a little bit. The lumpectomy was all about getting the cancer out. This surgery was about getting something put in. I was thinking about having to do chemo and wishing I didn't. I was teary when my pre-op nurse, Julie, came in. She was nice and got me a Kleenex and then started asking me all the standard questions. Juan had to leave before my surgery would be over for a meeting so she said he could come back to sit with me now.
The nurse started to get my IV set up. I bragged about how I have good veins and IVs go in easy. She told me how she used to work in another department and how she's done lots and lots of IVs, too. I guess we both jinxed ourselves because of course she had trouble getting my IV in. The first vein kept rolling around and then collapsed. The second didn't cooperate at first, but eventually she got it in. I decided this was a sign that I was definitely supposed to be getting this port rather than get my chemo through and IV each time.
While I was getting the IV in, the anesthesiologist, Dr. B, came to talk to us. For this surgery, I wouldn't have to go under general anesthesia, they could use monitored anesthesia care which is a lighter kind of sedation. He said sometimes patients are kind of in and out of unconsciousness but that I would really know it; I wouldn't remember anything. He said being "awake" with this sedation is not the same as really being awake and aware. I wouldn't have to have a breathing tube so that was good. I was a little nervous but then they gave me some of the relaxing medication.
Dr. B said he was a pediatric anesthesiologist, and he told me that the surgery after mine was a 16-day-old baby. "A baby!" I said, "That's going to make me cry!" (And I did a little.) I signed all my consent forms and was feeling a little loopy from the medication. Beth got to come back and sit with us. I was feeling super sticky and itchy. I had those things on my legs again which were making me hot and uncomfortable. Every so often I would think about that little baby and feel sad. I thought about my own babies. I hope the baby's surgery went well and it gets to go home soon!
Dr. Livingston popped in to say hello. I don't think she initialed me this time. Then Lucy, my nurse from the other surgery, came in to wish me luck. Next, it was time to say goodbye to Juan and Beth and they took me to the OR. I remember moving to the operating table and they started hooking sensors on my back and check. They put that oxygen tube in my nose and I was out.
Waking up from this was a little different than the other surgery. After my lumpectomy, I really felt like I had just closed my eyes and when I woke up I wasn't even sure if I'd had the surgery yet. With this one, I felt more like I had taken a nap or something, and I knew the surgery was over. I didn't feel nauseous at all which was quite nice. The microchip, err port, is under that bandage.
I had two friendly nurses, Sally and Janel, that helped me get discharged and ready to go home. This time I remembered to ask if they knew my sister-in-law, Sarah, and they did. Beth got to come back (Juan had left for his meeting) and she helped me get dressed and then I just had to wait for the transport. After I got home, I laid down in Claire's room (it was actually clean and peaceful... and it has the electric blanket and the sun was coming in the window). I slept for a few hours and that felt good.
That night, Sarah and Samira came over and made us a great dinner of chicken parmesan and a great salad. It was good to have their company and also help playing with the kids. I felt pretty good that night (sure the meds didn't hurt). I took some pain meds the next day, too, but now I'm back to just ibuprofen.
My shoulder and neck have been kind of stiff, but I think it's mostly from not moving much while I sleep so I've been trying to stretch a lot and loosen it up. It has hurt some, but not too much. Maybe a 2-3 at worst on the pain scale? I never know. I'm supposed to leave my bandage on until I go to chemo and let the nurses there take it off and then they will put on my numbing cream.
Sunday was my day to try and get lots and lots of things done. I may have done too much as I was really tired last night and didn't feel great. I did some marathon shopping to buy a myriad of things to help with the side effects of the chemo and also to help me feel more organized. I am obsessed with being organized right now! I want to get rid of anything I don't really need and then have everything I keep have a place where it belongs. I had quite the list of "supplies" that I wanted to get.
I got my car washed inside and out - it needed it so bad! After my shopping trip Dawn came down and mopped my floors for me. They look so much better! While she mopped, I organized. Now, I suppose I feel as ready as I can for the week ahead.
I didn't sleep very well the night before my procedure. I think it was a combination of having just chopped off my all my hair and knowing I was going to the hospital in the morning. I went out to the living room and watched the final episode of Project Runway Allstars around 3 am (Dmitry won). We got to the hospital dark and early to check in at 5:30 am. Juan and Beth were my "village" for this surgery. The lady at check-in even remembered us which was surprising. I didn't have to wait very long before they took me back to pre-op.
I was distracted about not being able to get a sample and then I realized there was pretty much no way I could be pregnant (in addition to the fact my husband had a little surgery to prevent it a couple years ago). I popped out and told the nurse, I don't think this is really necessary because I'm, well, you know... the thing that girls do (well at least before they have chemo-induced menopause). He said it didn't matter, I still had to try. Low and behold I had success, and to no one's surprise, I'm officially not pregnant.
Then the nurse took me over to my "room" for the next couple hours. First, I had to change into a gown. Again they wanted me to take everything off. This was an issue for me because of what I mentioned above. I was hoping they'd let me at least keep my underwear on. Nope. They kindly gave me a pair of operating-room-approved mesh undies (just like after you have a baby) and a maxi-pad that was about 10 inches long and 2 inches thick. Thank goodness I didn't need that... I politely said I had something that might be more comfortable (smaller than a mattress) and luckily that was ok.
I wasn't nervous about this surgery, but I felt kind of out of sorts. After the nurse left and closed the curtain I started crying a little bit. The lumpectomy was all about getting the cancer out. This surgery was about getting something put in. I was thinking about having to do chemo and wishing I didn't. I was teary when my pre-op nurse, Julie, came in. She was nice and got me a Kleenex and then started asking me all the standard questions. Juan had to leave before my surgery would be over for a meeting so she said he could come back to sit with me now.
The nurse started to get my IV set up. I bragged about how I have good veins and IVs go in easy. She told me how she used to work in another department and how she's done lots and lots of IVs, too. I guess we both jinxed ourselves because of course she had trouble getting my IV in. The first vein kept rolling around and then collapsed. The second didn't cooperate at first, but eventually she got it in. I decided this was a sign that I was definitely supposed to be getting this port rather than get my chemo through and IV each time.
Dr. B said he was a pediatric anesthesiologist, and he told me that the surgery after mine was a 16-day-old baby. "A baby!" I said, "That's going to make me cry!" (And I did a little.) I signed all my consent forms and was feeling a little loopy from the medication. Beth got to come back and sit with us. I was feeling super sticky and itchy. I had those things on my legs again which were making me hot and uncomfortable. Every so often I would think about that little baby and feel sad. I thought about my own babies. I hope the baby's surgery went well and it gets to go home soon!
Dr. Livingston popped in to say hello. I don't think she initialed me this time. Then Lucy, my nurse from the other surgery, came in to wish me luck. Next, it was time to say goodbye to Juan and Beth and they took me to the OR. I remember moving to the operating table and they started hooking sensors on my back and check. They put that oxygen tube in my nose and I was out.
Waking up from this was a little different than the other surgery. After my lumpectomy, I really felt like I had just closed my eyes and when I woke up I wasn't even sure if I'd had the surgery yet. With this one, I felt more like I had taken a nap or something, and I knew the surgery was over. I didn't feel nauseous at all which was quite nice. The microchip, err port, is under that bandage.
That night, Sarah and Samira came over and made us a great dinner of chicken parmesan and a great salad. It was good to have their company and also help playing with the kids. I felt pretty good that night (sure the meds didn't hurt). I took some pain meds the next day, too, but now I'm back to just ibuprofen.
My shoulder and neck have been kind of stiff, but I think it's mostly from not moving much while I sleep so I've been trying to stretch a lot and loosen it up. It has hurt some, but not too much. Maybe a 2-3 at worst on the pain scale? I never know. I'm supposed to leave my bandage on until I go to chemo and let the nurses there take it off and then they will put on my numbing cream.
Sunday was my day to try and get lots and lots of things done. I may have done too much as I was really tired last night and didn't feel great. I did some marathon shopping to buy a myriad of things to help with the side effects of the chemo and also to help me feel more organized. I am obsessed with being organized right now! I want to get rid of anything I don't really need and then have everything I keep have a place where it belongs. I had quite the list of "supplies" that I wanted to get.
Saturday, February 14, 2015
Girls Night Turned Chemo Shower
{Update first} I had my port put in yesterday and it went just fine. The worst part was I had to be at the hospital at 5:30 am! I'm feeling pretty good today although I did just take a pain pill and now I feel even better. I will write more about that later.
My friends wanted to have a girls night before I start my chemo and we planned it for Thursday, February 12. Last weekend Beth asked what I thought about getting pedicures. That would have been great except that I had actually just gotten a lovely pedicure that morning. My very generous coworkers, Christine and Liz, had given me a gift certificate to Visiato Salon, and I realized I better use it before my toe nails potentially start to fall off or do other weird things.
Beth called me the next day to ask what I thought about getting my hair cut that night instead. My friend Kelli's sister is a hair dresser and had offered to help cut my hair if I would like. At first I wasn't sure if I was ready. I told Beth I'd better talk to Juan about it first, just in case he wasn't ready for it yet. In reality I was just stalling; I knew that he would probably say to do whatever I wanted to do... which he did. And so I decided to go for it. Once I was committed to the idea, I actually felt sort of excited for it. Like I mentioned in my other post, it was somewhat empowering to feel like I had a little bit of control over it.
Whenever we have a girls night (and they are pretty few and far between), but when we do, Claire always wants to come and for once she finally got her wish. I wanted her to be a part of the big hair cut experience and to feel like she was one of the "girls." She had gymnastics on Thursday and when that got over we drove out to Beth's house.
Based on a few comments Beth had made, I had an inkling that this girls night might be more than just getting my hair cut. She had mentioned something about checking the MSTI accessory room for a cute hat to give me. When we arrived at the house and there were some cute gift baskets on the table, my feelings were confirmed. "Oh my goodness!" I said, "This is totally my Chemo Shower, isn't it?"
Jen had some other cute name for it and now I can't remember it for the life of me but it was funny, too. Then I had to point out that the ribbon Beth used to decorate a dessert tray was in fact the ribbon she used on my baby shower invitations nearly 8 years ago. Yes, this was a chemo shower. I'm not sure if anyone else has ever coined this term, but I would like to take credit for it. Beth joked that we could play the traditional chemo shower game of "Who can tie the turban the fastest" (we didn't actually do that).
These girls! The gifts were all so thoughtful and useful. I have several cute hats now. Some comfy clothes for chemo days (or any days) and for exercising. Lemon drops and mints to help alleviate the metallic taste chemo can cause. Lotion and eye drops to help with the dryness it causes. Hand sanitizer to keep the germs at bay. A water bottle to keep me hydrated. Magazines to keep my mind occupied with something besides my reality. Protein shakes to help with my red blood cells. Even a cute garbage can to keep by my bed in case the nausea gets the best of me. Kelli's mother-in-law and fellow breast cancer survivor, Leslie, even sent me a Willowtree angel signifying "courage." That one may have brought the tears to my eyes.
After all the razor cutting, Claire was released from her duties and Rachel took back over. After more cutting, I rinsed my head in the shower again and decided I wanted to go even shorter. Why not?
One more rinse, some final trimming, and I was good to go. Look at all of that hair! Claire had fun helping to sweep the floor. Apparently I need to put this girl to work at home more.
Claire really did not want to take a break from sweeping to have a picture but I forced her to anyway.
This is Rachel. I cannot thank her enough for giving me such a cute cut and taking time out her day to help me. It was really special to be able to do this with my friends and not in a salon. I wasn't sure how emotional it might be, and I think it was much more comfortable to be able to do it like this.
These are my girls... (left to right)
Top: Stephanie Evans, Jen Mauk, Jenni Brazier, Allison Sandel, Dawn Harelson
Bottom: Kelli Fulkerson, Megan DeAngelo, Claire, me, Beth Seeger
At the last minute, when I figured out this might be a chemo shower, I decided I wanted to give the girls a little thank you for all their support and help. I made these little tags which I put on a box of valentine sweet hearts. I thought the Sicilian Proverb (thanks Google) was appropriate for the theme of the evening, as I was counting on my friends to tactfully give me their honest opinions.
It's definitely taking a bit to get used to this short hair. It feels so weird. When I shake my head (which I've been doing a lot) nothing moves. There really isn't anything there to move. It feels like a helmet... I hope it doesn't look like one. I'm sure I will get used to it, probably just in time for it all to fall out and I can't even begin to imagine what that is going to feel like! When I catch myself in the mirror I have to do a double take. When I get out of the shower I realize that I am used to sort of "flipping" my hair back to get it away from my face or something. It's apparently an automatic motion that I do, only now I notice myself doing it because there is no hair to "flip" so it feels super awkward.
I can tell you it is pretty awesome to just towel dry your head and be done if you want. I don't need my turby-twists any more. I have some gel (thanks Beau & Jenni!) that is helping so it doesn't look poofy. Poofy = NOT GOOD! Thankfully, my fears about the curls looking like an afro were unfounded. There is not enough hair left to curl... my curls are more wavy and they are long gone. I do think I might look a little like a boy. Especially when I don't have makeup on. I think having my hair short now is going to make it easier to transition to having no hair at all so I have no regrets about doing this.
I have been told that I am not to write thank you notes for all the lovely gifts I was given and I will take that to heart this time. I feel like I have been saying thank you so much that it is losing it's meaning but I don't know what else to say.
I just cannot express how it feels to have all these people supporting me and my family in so many ways... Through meals, positive thoughts and prayers, phone calls and messages, cute hats, and lots of long hugs. I now have documented proof that once you get a cancer diagnosis everyone's hugs are a little tighter... a little longer. Bryce and I call them "squeezy hugs" and I have to make a special request to get one from him, but he usually obliges.
I will let this post serve as a thank you note for all my chemo shower gifts, and more than anything for the love and support you girls give me everyday. Thank you!
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Beth called me the next day to ask what I thought about getting my hair cut that night instead. My friend Kelli's sister is a hair dresser and had offered to help cut my hair if I would like. At first I wasn't sure if I was ready. I told Beth I'd better talk to Juan about it first, just in case he wasn't ready for it yet. In reality I was just stalling; I knew that he would probably say to do whatever I wanted to do... which he did. And so I decided to go for it. Once I was committed to the idea, I actually felt sort of excited for it. Like I mentioned in my other post, it was somewhat empowering to feel like I had a little bit of control over it.
Whenever we have a girls night (and they are pretty few and far between), but when we do, Claire always wants to come and for once she finally got her wish. I wanted her to be a part of the big hair cut experience and to feel like she was one of the "girls." She had gymnastics on Thursday and when that got over we drove out to Beth's house.
Based on a few comments Beth had made, I had an inkling that this girls night might be more than just getting my hair cut. She had mentioned something about checking the MSTI accessory room for a cute hat to give me. When we arrived at the house and there were some cute gift baskets on the table, my feelings were confirmed. "Oh my goodness!" I said, "This is totally my Chemo Shower, isn't it?"
Jen had some other cute name for it and now I can't remember it for the life of me but it was funny, too. Then I had to point out that the ribbon Beth used to decorate a dessert tray was in fact the ribbon she used on my baby shower invitations nearly 8 years ago. Yes, this was a chemo shower. I'm not sure if anyone else has ever coined this term, but I would like to take credit for it. Beth joked that we could play the traditional chemo shower game of "Who can tie the turban the fastest" (we didn't actually do that).
These girls! The gifts were all so thoughtful and useful. I have several cute hats now. Some comfy clothes for chemo days (or any days) and for exercising. Lemon drops and mints to help alleviate the metallic taste chemo can cause. Lotion and eye drops to help with the dryness it causes. Hand sanitizer to keep the germs at bay. A water bottle to keep me hydrated. Magazines to keep my mind occupied with something besides my reality. Protein shakes to help with my red blood cells. Even a cute garbage can to keep by my bed in case the nausea gets the best of me. Kelli's mother-in-law and fellow breast cancer survivor, Leslie, even sent me a Willowtree angel signifying "courage." That one may have brought the tears to my eyes.
We had a lovely dinner and thankfully a few glasses of wine to take the edge off. Kelli's sister, Rachel, arrived and we got down to business. The cutting of the hair. First I got my hair wet in the shower and then the moment of truth had arrived. I had to get one last "before" shot of my hair. Who knows what it might look like when it grows back in later this year. There is a good chance it will never be the same (that might be ok... it's not like I had great hair anyway).
Rachel was so awesome. She let Claire help cut off all those curls. The second she started cutting, razoring I actually think, the back off I know my eyes and my mouth were about as wide as they could be! It was the craziest feeling ever. Talk about being the center of attention! It was pretty surreal sitting there surrounded by my friends while my daughter (with assistance) cut off all my hair.
These are my girls... (left to right)
Top: Stephanie Evans, Jen Mauk, Jenni Brazier, Allison Sandel, Dawn Harelson
Bottom: Kelli Fulkerson, Megan DeAngelo, Claire, me, Beth Seeger
It's definitely taking a bit to get used to this short hair. It feels so weird. When I shake my head (which I've been doing a lot) nothing moves. There really isn't anything there to move. It feels like a helmet... I hope it doesn't look like one. I'm sure I will get used to it, probably just in time for it all to fall out and I can't even begin to imagine what that is going to feel like! When I catch myself in the mirror I have to do a double take. When I get out of the shower I realize that I am used to sort of "flipping" my hair back to get it away from my face or something. It's apparently an automatic motion that I do, only now I notice myself doing it because there is no hair to "flip" so it feels super awkward.
I can tell you it is pretty awesome to just towel dry your head and be done if you want. I don't need my turby-twists any more. I have some gel (thanks Beau & Jenni!) that is helping so it doesn't look poofy. Poofy = NOT GOOD! Thankfully, my fears about the curls looking like an afro were unfounded. There is not enough hair left to curl... my curls are more wavy and they are long gone. I do think I might look a little like a boy. Especially when I don't have makeup on. I think having my hair short now is going to make it easier to transition to having no hair at all so I have no regrets about doing this.
I have been told that I am not to write thank you notes for all the lovely gifts I was given and I will take that to heart this time. I feel like I have been saying thank you so much that it is losing it's meaning but I don't know what else to say.
I just cannot express how it feels to have all these people supporting me and my family in so many ways... Through meals, positive thoughts and prayers, phone calls and messages, cute hats, and lots of long hugs. I now have documented proof that once you get a cancer diagnosis everyone's hugs are a little tighter... a little longer. Bryce and I call them "squeezy hugs" and I have to make a special request to get one from him, but he usually obliges.
I will let this post serve as a thank you note for all my chemo shower gifts, and more than anything for the love and support you girls give me everyday. Thank you!
Thursday, February 12, 2015
Chemo School and The Unknown
{Update first} I am getting my port put in first thing tomorrow morning - Friday, February 13th. Yep, Friday the 13th. Oh well, I gave birth to the most awesome baby boy after a great labor on a Friday the 13th so it doesn't scare me! I have to check in at 5:30 am (eeeeek!!!). You can stop reading right now, or if you are bored you can read this long and rambling post.
Yesterday I had chemo school. It was actually called "TLC" for Treatment Learning Class, but I like chemo school better. Juan and Beth went to school with me. There was one other patient, an older gentleman. A chemo nurse named Alice was our teacher and she was really nice.
The class was scheduled to last 90 minutes. It totally lasted twice that long and I don't know how they could ever fit all the information in 90 minutes. It was really useful to me, even though I already had heard or read about many of the things that might happen. We also got a tour so it's kind of nice to know where I'll be going on Tuesday and how they shuffle you around and all that.
What did I learn and get more details about...
My chemo drugs must be pretty strong and typically have a big impact on all the components of your blood. Of course this was interesting to me since I work at the Red Cross blood center. I can expect my red blood cell count to go down and possibly become anemic; my white blood cells will definitely be diminished; and also my platelet count will probably be lower than normal. I shouldn't need any transfusions or anything like that but sometimes people do, and Alice said sometimes you might see patients there getting a transfusion of RBC or platelets. That could be interesting for me since I see all the blood and platelet donors here at work... another reminder of how important our donors really are! Thank you again blood donors! You can't get a transfusion of white blood cells (in fact we remove the WBC from other blood products because it lessens the chance of adverse reaction in patients - it's called leukoreducing I think.) I will be getting that Neulasta shot to boost my WBC.
The big side effect that is pretty much a guarantee is fatigue. This can result in part from the low RBC counts. Keeping my calorie intake and especially protein up will help. Light exercise like walking every day will help. A big thing is to keep your weight stable. They don't want you to lose or gain weight. Whatever! I would be happy to lose 10 or even 15 pounds, ha ha!
Nausea can be another side effect but there are so many good drugs that they can usually keep this under control. Alice said they make a guess about your potential for nausea based on a few things... did I have morning sickness during pregnancy (no = good), do I get motion sickness (no = good), am I a smoker (no = bad [well not really, only bad in that I'm more likely to have nausea]), do I drink alcohol (yes = good [but I get terrible hangovers if I drink too much, wonder if that means anything?]). Oh, and you should know the nausea medication causes constipation... awesome. So then you can take more medication else to help with that.
Besides the nausea, I can expect my taste buds to change which also might make eating not as enjoyable. Maybe I'll start to just love the taste of broccoli and hate cookies (and don't tell the nurse, but in turn lose that 10 pounds!). I have a feeling that's not how it will work. Cookies will probably taste extra good and I'll gain 10 pounds instead! The nurse said sometimes people do gain weight... she didn't say why but this is my guess.
Also you are more apt to get sores in your mouth. My friend had already told me about a mouth rinse with salt, baking soda, and water that the nurse also suggested. So I'll be mixing up a batch of that to keep in the bathroom and hopefully won't have a problem with this. I hate canker sores and can hardly imagine having more than one at a time.
Hair loss... yes, dear Alice confirmed that the two drugs I will be taking both cause hair loss and I can say goodbye to my messy curls mostly likely between day 12 and day 19 post treatment (that's the first treatment). So if my hair follicles follow suit, that means I could start losing clumps of hair anywhere from February 28 to March 7. The silver lining is I shouldn't have to shave my legs or anywhere else for a while. I really hope I don't lose all my eyebrows and eyelashes. I might but might not. If for some reason my leg hair keeps growing I will be totally pissed!
Another side effect one of my drugs in particular causes is neuropathy. This is when you have numbness in your hands and/or feet. It can be painful or tingly or just plain numb. It should go away after treatment although can be permanent sometimes.
So now I am in yet another holding pattern. Waiting to find out how I will really feel after I have these toxic drugs in my system. It is so crazy to think this medicine is going to harm my body, my healthy cells, in so many ways while at the same time increase my chances at living a long and healthy life down the road. Why can't some scientist doctor develop a way to target only the cancer cells? They are obviously different from hair follicle cells, skin cells, cells in the mouth, etc. in some way (like a way that kills you eventually which is pretty radical). On a molecular level? I have no idea because I'm not a scientist, and I obviously don't remember as much from the Bio and Chem classes I took in college as I would like! I think I even took advanced classes (back when I thought I was going to study natural resources I took lots of science classes) but I don't remember very much.
This waiting and wondering is definitely causing me a little anxiety. I'm not normally one to feel very stressed or to really notice reactions to stress in my body the way some people do, but I can tell this is effecting me at least some of the time. My stomach hurt last weekend and I'm pretty sure it was just stress. It also could have been some cheese and crackers I ate... how long had that cheese been in the fridge? My mind spins and spins, and it feels like I am thinking of a thousand things at once. I hate when I can't turn my mind off!
In the class yesterday I had a moment where I noticed my heart beating, maybe pounding, and I kept thinking, "I can't believe I am here! I can't believe I am learning about chemo because I am going to have chemo! I can't believe I have this stack of papers and information about cancer sitting in front of me because I have cancer!" I don't remember what the nurse was saying, but then she asked how old my kids were, and I couldn't even open my mouth. I couldn't make a sound, much less say the names and ages of my kids out loud. My kids! A few tears leaked out. I was able to keep myself from full on crying, but it was hard. And then I was fine again.
At the end of the class Alice gave us a tour of the MSTI facility. I was able to answer her question about my kids and she just had the kindest look on her face. The tour was really helpful and I feel a little better knowing where I'm going on Tuesday. She walked through the process of getting blood drawn, seeing Dr. Bridges, meeting the pharmacist, and so on.
The fact is, the unknown is scary. So much in life is unknown, everything really. You don't know what is going to happen any given day or the next week or year. I think we all have said things like, you don't know what's going to happen tomorrow, I might get hit by a truck. It's true, you might, but it also incredibly intangible. I don't think it's something that actually causes most people anxiety on a daily basis.
You don't know you're going to get cancer (or any other life-changing diagnosis). The day before I went to my check-up with Dr. Fealko I never imagined my life would change forever. Then she noticed that lump. Although in the beginning, I honestly wasn't that freaked out. I think the unknown was a bit of a blessing at that time. Cancer was still intangible in my world. After I had the biopsy, then I was more worried. Suddenly it was 50-50... I was either going to get a call saying it was nothing or a call that would literally change my world with a single word: cancer. We all know how that ended.
I noticed after I was diagnosed that I was hyper-anxious about random things. We had a big snow storm and I was so scared to drive in the snow. I have driven in the snow quite a lot... I don't love it, but I know I can do it. But now I felt like maybe I needed snow tires. I felt like I might slide off the road or into another car at any moment. I was a little terrified to drive to Tekoa for Christmas. I thought about getting some chains (we've made that drive countless times in the winter and never once needed chains). I imagined us crashing. All of us sliding into the Payette or Salmon River. People would say, "Can you believe Shana was diagnosed with cancer only to have her family die in a car accident?"
I find that I suddenly feel obsessed with certain, totally random things. Like Juan's undershirts. Hello, random! But after folding clothes the other day and seeing how worn some of the necklines are I can't stop thinking about getting him new shirts and making new rags. I bought some the other day only to realize they weren't the right ones. I didn't look to close because I was only focused on new shirts.
I have done a lot of waiting and dealt with a lot of "unknowns" for the last 3 months and 2 days, to be exact. These unknowns are different. They are tangible, for the most part. I know I have to do chemo. I don't really know how I will feel. When will I start to feel it? How long will it last? I know things that might happen, but will they happen to me? I am so thankful for Krista and Jennifer who have shared their personal experiences with me (and also for chemo school), because it lessens the unknowns to a certain extent. They have both been so open with me. So willing to talk about very personal things. Things I'm sure they would rather forget. I cannot thank them enough!
I am by no means excited for next Tuesday, but I am so ready to get it over with. Since I found out I am going to do chemo I have had these weird moments where I think I can't wait for February 17. Then I think, that is crazy!!! There is no way in hell that I am excited for this! And then I realize my body... my mind... is so anxious about it, and I just want to eliminate the unknown. I guess I am "excited" in that sense. And so, if this is my circus, then let's get this show on the road!
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Yesterday I had chemo school. It was actually called "TLC" for Treatment Learning Class, but I like chemo school better. Juan and Beth went to school with me. There was one other patient, an older gentleman. A chemo nurse named Alice was our teacher and she was really nice.
The class was scheduled to last 90 minutes. It totally lasted twice that long and I don't know how they could ever fit all the information in 90 minutes. It was really useful to me, even though I already had heard or read about many of the things that might happen. We also got a tour so it's kind of nice to know where I'll be going on Tuesday and how they shuffle you around and all that.
What did I learn and get more details about...
My chemo drugs must be pretty strong and typically have a big impact on all the components of your blood. Of course this was interesting to me since I work at the Red Cross blood center. I can expect my red blood cell count to go down and possibly become anemic; my white blood cells will definitely be diminished; and also my platelet count will probably be lower than normal. I shouldn't need any transfusions or anything like that but sometimes people do, and Alice said sometimes you might see patients there getting a transfusion of RBC or platelets. That could be interesting for me since I see all the blood and platelet donors here at work... another reminder of how important our donors really are! Thank you again blood donors! You can't get a transfusion of white blood cells (in fact we remove the WBC from other blood products because it lessens the chance of adverse reaction in patients - it's called leukoreducing I think.) I will be getting that Neulasta shot to boost my WBC.
The big side effect that is pretty much a guarantee is fatigue. This can result in part from the low RBC counts. Keeping my calorie intake and especially protein up will help. Light exercise like walking every day will help. A big thing is to keep your weight stable. They don't want you to lose or gain weight. Whatever! I would be happy to lose 10 or even 15 pounds, ha ha!
Nausea can be another side effect but there are so many good drugs that they can usually keep this under control. Alice said they make a guess about your potential for nausea based on a few things... did I have morning sickness during pregnancy (no = good), do I get motion sickness (no = good), am I a smoker (no = bad [well not really, only bad in that I'm more likely to have nausea]), do I drink alcohol (yes = good [but I get terrible hangovers if I drink too much, wonder if that means anything?]). Oh, and you should know the nausea medication causes constipation... awesome. So then you can take more medication else to help with that.
Besides the nausea, I can expect my taste buds to change which also might make eating not as enjoyable. Maybe I'll start to just love the taste of broccoli and hate cookies (and don't tell the nurse, but in turn lose that 10 pounds!). I have a feeling that's not how it will work. Cookies will probably taste extra good and I'll gain 10 pounds instead! The nurse said sometimes people do gain weight... she didn't say why but this is my guess.
Also you are more apt to get sores in your mouth. My friend had already told me about a mouth rinse with salt, baking soda, and water that the nurse also suggested. So I'll be mixing up a batch of that to keep in the bathroom and hopefully won't have a problem with this. I hate canker sores and can hardly imagine having more than one at a time.
Hair loss... yes, dear Alice confirmed that the two drugs I will be taking both cause hair loss and I can say goodbye to my messy curls mostly likely between day 12 and day 19 post treatment (that's the first treatment). So if my hair follicles follow suit, that means I could start losing clumps of hair anywhere from February 28 to March 7. The silver lining is I shouldn't have to shave my legs or anywhere else for a while. I really hope I don't lose all my eyebrows and eyelashes. I might but might not. If for some reason my leg hair keeps growing I will be totally pissed!
Another side effect one of my drugs in particular causes is neuropathy. This is when you have numbness in your hands and/or feet. It can be painful or tingly or just plain numb. It should go away after treatment although can be permanent sometimes.
So now I am in yet another holding pattern. Waiting to find out how I will really feel after I have these toxic drugs in my system. It is so crazy to think this medicine is going to harm my body, my healthy cells, in so many ways while at the same time increase my chances at living a long and healthy life down the road. Why can't some scientist doctor develop a way to target only the cancer cells? They are obviously different from hair follicle cells, skin cells, cells in the mouth, etc. in some way (like a way that kills you eventually which is pretty radical). On a molecular level? I have no idea because I'm not a scientist, and I obviously don't remember as much from the Bio and Chem classes I took in college as I would like! I think I even took advanced classes (back when I thought I was going to study natural resources I took lots of science classes) but I don't remember very much.
This waiting and wondering is definitely causing me a little anxiety. I'm not normally one to feel very stressed or to really notice reactions to stress in my body the way some people do, but I can tell this is effecting me at least some of the time. My stomach hurt last weekend and I'm pretty sure it was just stress. It also could have been some cheese and crackers I ate... how long had that cheese been in the fridge? My mind spins and spins, and it feels like I am thinking of a thousand things at once. I hate when I can't turn my mind off!
In the class yesterday I had a moment where I noticed my heart beating, maybe pounding, and I kept thinking, "I can't believe I am here! I can't believe I am learning about chemo because I am going to have chemo! I can't believe I have this stack of papers and information about cancer sitting in front of me because I have cancer!" I don't remember what the nurse was saying, but then she asked how old my kids were, and I couldn't even open my mouth. I couldn't make a sound, much less say the names and ages of my kids out loud. My kids! A few tears leaked out. I was able to keep myself from full on crying, but it was hard. And then I was fine again.
At the end of the class Alice gave us a tour of the MSTI facility. I was able to answer her question about my kids and she just had the kindest look on her face. The tour was really helpful and I feel a little better knowing where I'm going on Tuesday. She walked through the process of getting blood drawn, seeing Dr. Bridges, meeting the pharmacist, and so on.
The fact is, the unknown is scary. So much in life is unknown, everything really. You don't know what is going to happen any given day or the next week or year. I think we all have said things like, you don't know what's going to happen tomorrow, I might get hit by a truck. It's true, you might, but it also incredibly intangible. I don't think it's something that actually causes most people anxiety on a daily basis.
You don't know you're going to get cancer (or any other life-changing diagnosis). The day before I went to my check-up with Dr. Fealko I never imagined my life would change forever. Then she noticed that lump. Although in the beginning, I honestly wasn't that freaked out. I think the unknown was a bit of a blessing at that time. Cancer was still intangible in my world. After I had the biopsy, then I was more worried. Suddenly it was 50-50... I was either going to get a call saying it was nothing or a call that would literally change my world with a single word: cancer. We all know how that ended.
I noticed after I was diagnosed that I was hyper-anxious about random things. We had a big snow storm and I was so scared to drive in the snow. I have driven in the snow quite a lot... I don't love it, but I know I can do it. But now I felt like maybe I needed snow tires. I felt like I might slide off the road or into another car at any moment. I was a little terrified to drive to Tekoa for Christmas. I thought about getting some chains (we've made that drive countless times in the winter and never once needed chains). I imagined us crashing. All of us sliding into the Payette or Salmon River. People would say, "Can you believe Shana was diagnosed with cancer only to have her family die in a car accident?"
I find that I suddenly feel obsessed with certain, totally random things. Like Juan's undershirts. Hello, random! But after folding clothes the other day and seeing how worn some of the necklines are I can't stop thinking about getting him new shirts and making new rags. I bought some the other day only to realize they weren't the right ones. I didn't look to close because I was only focused on new shirts.
I have done a lot of waiting and dealt with a lot of "unknowns" for the last 3 months and 2 days, to be exact. These unknowns are different. They are tangible, for the most part. I know I have to do chemo. I don't really know how I will feel. When will I start to feel it? How long will it last? I know things that might happen, but will they happen to me? I am so thankful for Krista and Jennifer who have shared their personal experiences with me (and also for chemo school), because it lessens the unknowns to a certain extent. They have both been so open with me. So willing to talk about very personal things. Things I'm sure they would rather forget. I cannot thank them enough!
I am by no means excited for next Tuesday, but I am so ready to get it over with. Since I found out I am going to do chemo I have had these weird moments where I think I can't wait for February 17. Then I think, that is crazy!!! There is no way in hell that I am excited for this! And then I realize my body... my mind... is so anxious about it, and I just want to eliminate the unknown. I guess I am "excited" in that sense. And so, if this is my circus, then let's get this show on the road!
Monday, February 9, 2015
Thoughts on Hair While I Still Have It
I have often complained about my hair. Anyone who knows me probably knows that I usually just pull it back in a pony tail or clip and call it good. Hair dryer? Takes WAY to long with my thick hair. Curl or flat iron? Also takes a long time, plus the hair has to be dry first (see my first issue). Hair cuts? Is it really necessary to get one more than once or twice a year? Last year I had my hair cut and the girl cut it shorter than I really intended, but I ended up liking it quite a bit and have since embraced the wild waves/curls and worn it down a lot (in part because at first it was too short to pull up, gasp!).
The other thing about my hair... it's totally on it's way to turning gray... and has been for quite some time. At the pool last summer Claire was playing with another kid and when his mom asked if Claire's mommy was the blonde one, Claire said, "Yes, but she dyes it because it's turning gray." I used to try and pull the gray hairs but over the last few years it became obvious that I would be half bald if I did that. I used to get it highlighted but (a) it's expensive and more importantly (b) I don't have time to keep it up with regular appointments. Part of the reason I cut my hair shorter last year was so that it would be easier for me to color at home. It's a pain but I think it has looked ok (and most importantly NOT orange). I remember asking my mom a few years ago how long before my hair is all gray... like 10, 15 years? She was like, sorry, not that long. The gray is a family trait... and it's only a matter of time until I have lovely silver hair like my grandma and mom. But at 37 I really am not ready for that yet!
Of course I'm even less prepared to be bald. Although I think I'm possibly more concerned about when my hair does grow back that it will grow back all gray or white. I think it's totally possible this could happen. Thanks cancer. Of course it's also possible it could come back darker brown or more blonde, I suppose. They say it can happen. People have stick straight hair, go through chemo, and it comes back thick and curly. Maybe mine will come back sleek and shiny (and any color but gray)... that would be ok.
In the meantime I'm taking control (as much as possible) and chopping my hair super short this week. I'm definitely nervous about it! I have a delusion that maybe my hair won't fall out and so I should wait. But in reality I think it might make the transition to no hair a little easier, especially since I've been wearing it down and curly so much lately. People I've talked to (who've been there) say having it short when it starts falling out is good and won't feel as bad. When it really starts falling out, I'll probably shave it off anyway. I already have a deal with Juan... I've shaved his head many times... now it will be his turn.
I'm kind of afraid I might look like a boy. I see lots of cute pixie cuts online, but the women are usually models or actresses and abnormally beautiful. Also most have lots of makeup on which isn't me. I wonder if I really like the hair or is it just the girl is so pretty that any hair will be great on her.
I'm not sure what my hair will do when it's really short. It's got quite a bit of waves/curl in it. I'm thinking if it's super short there won't be enough length of hair to curl anyway?
So here are some of the pictures I like. I tried to find some that have more body/waves because that might be what mine would end up looking like, although I like the straighter ones the most.
Can you imagine any of these hair cuts on my face? Opinions? Help!
Friday, February 6, 2015
28
Twenty-eight. That was my score on the Oncotype test (I thought this article, although a few years old, explained the test well).
My score fell in the intermediate range like I kind of suspected it might. Darn! The intermediate range is from 18-30, so I was high within that range, which I think was preferable than if it had been low. If I was only one or two points over the "low risk/no chemo" cut-off it would be even more difficult to decide if all the side effects of chemo (long and short-term) were worth it.
Getting the official news that I need to do chemo was almost as bad as finding out I had cancer in the first place. Having to tell people that I need to do chemo is almost as difficult as telling them I have cancer.
No one ever told me I would not have to do chemo. I believe it was presented that given what we knew about my cancer from the initial biopsy that is was possible, perhaps even probable, that I might only need lumpectomy + radiation. At least part of that turned out true. Even though that was back in November, literally the day I was diagnosed, I obviously was holding onto the hope it would be the case. Then when there was no cancer in my lymph nodes I thought that basically meant I was in the clear (chemo-wise). Wrong...
When I have told the people that I have cancer - something that was really, really difficult for me - I have always presented it with the positive spin that it's not very aggressive (still basically true, thank goodness) and I might not have to do chemo. So now I have to tell them that, actually, I do have to do it. I think it's in part because I want to protect them and reassure them that I will be fine, it could be worse (and it still could be!). Most of us have at least an idea of what chemo means and does to a person and you don't want to think about someone you care about going through it.
Dr. Bridges (my oncologist) said he thinks I will tolerate it well because I'm otherwise healthy (and don't forget oh so young!). I have a really hard time with this being healthy, but having cancer at the same time which inherently means, no, you are not healthy. I've always been one of those lucky people who can check the "no" box on pretty much everything on health history and medication forms. I try to remind myself that although I feel perfectly fine and great right now, if that stupid lump hadn't been found, eventually I would not feel good, and the prognosis would be much worse for a happy outcome.
It's hard to accept that I am going to subject my healthy-feeling body to a medical regimen that is going to make me feel like crap. Chemo, in my case, is all about preventing cancer from recurring/metasizing elsewhere in my body. From what I have learned, if that happens your options are severely limited and basically you are treated for cancer until your fragile body can take no more. I am definitely all about avoiding that from happening. If doing chemo gets my chance of that happening down below 10% I will take it. I have a 7-year-old and a 3-year-old so I need to stick around for a long time!
So what's the plan... I'm waiting to hear from my surgeon's office to schedule getting a port. I had hoped I might avoid this, but after talking with Dr. Bridges, his nurse, as well as a few women who've been through all this, I was convinced that I will be glad I have the port. Getting a port means another outpatient surgery which I assume will be next week. They put a little disk under the skin near your collar bone. It is attached to a catheter that connects to some vein or artery. Then when I have treatments, or blood draws, they can use the port to administer the drugs rather than give an IV each time. I wasn't too worried about an IV, but the doctor said with these drugs veins are more likely to have issues and you can only do it in my right arm and he looked at my arm and kind of shook his head.
They gave me a big, fat folder full of chemo information. The first brochure in the booklet is all about "Fall Risk." I really hope that isn't going to apply so much to me. I have to take a "Treatment Learning Class" (TLC) next week.
Then on Tuesday, February 17th I will start my chemo regimen.
Four treatments of two drugs, Cytoxan and Taxotere, administrered every 3 weeks (so 12 weeks/3 months total). Supposedly about 4 days after the treatment is when you really feel like total crap... just in time for the weekend. I'm not sure how many days I should expect to feel totally crappy. The day after each treatment I will have to go back to get a Neulasta shot. The shot stimulates white blood cell growth to combat the fact we are killing my white blood cells. This was the first thing I read on one of the drug info sheets when I got home... yikes! It seems so crazy since that is exactly what I'm trying to prevent here!
My score fell in the intermediate range like I kind of suspected it might. Darn! The intermediate range is from 18-30, so I was high within that range, which I think was preferable than if it had been low. If I was only one or two points over the "low risk/no chemo" cut-off it would be even more difficult to decide if all the side effects of chemo (long and short-term) were worth it.
Getting the official news that I need to do chemo was almost as bad as finding out I had cancer in the first place. Having to tell people that I need to do chemo is almost as difficult as telling them I have cancer.
No one ever told me I would not have to do chemo. I believe it was presented that given what we knew about my cancer from the initial biopsy that is was possible, perhaps even probable, that I might only need lumpectomy + radiation. At least part of that turned out true. Even though that was back in November, literally the day I was diagnosed, I obviously was holding onto the hope it would be the case. Then when there was no cancer in my lymph nodes I thought that basically meant I was in the clear (chemo-wise). Wrong...
When I have told the people that I have cancer - something that was really, really difficult for me - I have always presented it with the positive spin that it's not very aggressive (still basically true, thank goodness) and I might not have to do chemo. So now I have to tell them that, actually, I do have to do it. I think it's in part because I want to protect them and reassure them that I will be fine, it could be worse (and it still could be!). Most of us have at least an idea of what chemo means and does to a person and you don't want to think about someone you care about going through it.
Dr. Bridges (my oncologist) said he thinks I will tolerate it well because I'm otherwise healthy (and don't forget oh so young!). I have a really hard time with this being healthy, but having cancer at the same time which inherently means, no, you are not healthy. I've always been one of those lucky people who can check the "no" box on pretty much everything on health history and medication forms. I try to remind myself that although I feel perfectly fine and great right now, if that stupid lump hadn't been found, eventually I would not feel good, and the prognosis would be much worse for a happy outcome.
It's hard to accept that I am going to subject my healthy-feeling body to a medical regimen that is going to make me feel like crap. Chemo, in my case, is all about preventing cancer from recurring/metasizing elsewhere in my body. From what I have learned, if that happens your options are severely limited and basically you are treated for cancer until your fragile body can take no more. I am definitely all about avoiding that from happening. If doing chemo gets my chance of that happening down below 10% I will take it. I have a 7-year-old and a 3-year-old so I need to stick around for a long time!
So what's the plan... I'm waiting to hear from my surgeon's office to schedule getting a port. I had hoped I might avoid this, but after talking with Dr. Bridges, his nurse, as well as a few women who've been through all this, I was convinced that I will be glad I have the port. Getting a port means another outpatient surgery which I assume will be next week. They put a little disk under the skin near your collar bone. It is attached to a catheter that connects to some vein or artery. Then when I have treatments, or blood draws, they can use the port to administer the drugs rather than give an IV each time. I wasn't too worried about an IV, but the doctor said with these drugs veins are more likely to have issues and you can only do it in my right arm and he looked at my arm and kind of shook his head.
They gave me a big, fat folder full of chemo information. The first brochure in the booklet is all about "Fall Risk." I really hope that isn't going to apply so much to me. I have to take a "Treatment Learning Class" (TLC) next week.
Four treatments of two drugs, Cytoxan and Taxotere, administrered every 3 weeks (so 12 weeks/3 months total). Supposedly about 4 days after the treatment is when you really feel like total crap... just in time for the weekend. I'm not sure how many days I should expect to feel totally crappy. The day after each treatment I will have to go back to get a Neulasta shot. The shot stimulates white blood cell growth to combat the fact we are killing my white blood cells. This was the first thing I read on one of the drug info sheets when I got home... yikes! It seems so crazy since that is exactly what I'm trying to prevent here!
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