I want to say that two weeks into taxol, and after my third treatment today, it is definitely easier on my body than the a/c. I was grocery shopping at Meijer's on a Sunday, and remarked to Steve that in the last two months, this was the first Sunday after a treatment that I was able to do that. Yeah, I'm a little more tired on Friday and Saturday, but nothing like the 3 days of not leaving the house, or driving, or basically, going anywhere, during the first four rounds of chemo. This is definitely a relief!
Today Tracy was my nurse again, and I just really enjoy her...she has so much personality. I always said that the oncology department is a terrible place to be a member, but they do everything in their power to make it not as terrible as it could be. Today, during treatment, the machine tha regulates the flow of fluids into my port seemed to act up...Tracy was kind of beating on it, saying something like "Don't be kicking air bubbles into my line!" What? Air bubbles? "Uh, Tracy? You aren't trying to kill me, are you?." "Oh, no," she assured me. "It takes more than a line of bubbles to kill you. I know in all the tv shows, they make it look like a single air bubble will kill you, but that's not true. I promise...you'll be fine." "Holy crap!" I was really nervous, but she was right...she didn't kill me, even though I assured her that I watch ALL the CSI's and Law and Orders, and, yes, people are definitely killed ALL the time by air bubble! What a fake!
Side effects seem to be less pronounced...I've had a little of the neuropathy in my hands and feet, but not a lot so far. Tired at the end of the week, more than just the usual tired of a working mom, but way less than the overwhelming fatigue I felt a month ago. Still holding onto my eyebrows and eyelashes (keep your fingers crossed for me, will you?) and still have my arm hair, facial hair, and my head, though buzzed bald, still has a stubble you can feel with your hands...but a week and a half ago, I lost the nose hair...dang it! Now Kleenex is my very best friend. Between the cold I've had and the cough I can't shake, it just... feels pretty normal...every year going back to school, I've gotten sick in September. We have so many sick kids right now, it isn't even funny! And most of our staff has been sick too. Drake's soccer team has had sickness, too, so I think it's pretty much all over town right now...
I'm really appreciative of the half days I'm able to work, and rotating with one day working in the afternoon instead of the morning has been great. I'm tryong to have all my papers graded each day before I leave, so I can keep tabs on ALL of my kids, even the classes I'm only physically teaching one day a week. I'm working with my sub every day, making sure he knows what he's doing for each class, and getting feedback on how things went during the classes he taught. It almost feels like I have a student teacher again, only I'm not there to observe and correct...my job is to not feel guilty about the time I'm spending on me. This is probably the most difficult thing I've ever done...walked away during a school day. But, I'm doing it so I will (hopefully) never have to walk away from my students for any length of time in the future, ever again. "This too shall pass" has been my mantra from the beginning, and "this is only temporary, you WILL get through this," has been my back-up saying. Everyone needs a positive voice in their head...these have been mine. Ooooh, voices in my head! Side effects from the anti-nausea meds? Just kidding. I've already stated in previous posts that I talk to myself, nothing new there. But, did you know that sometimes, I talk to myself in different, funny sounding accents? It's all just practice, really, for my real job...of teaching English, and reading out loud to groups of children (albeit big ones!) of which many never got read to when they were little. A love of reading is instilled when a child is very small, and most of my kids never got that privilege, so I do everything in my power to make it a great experience for them now. ( I once had a student tell me "Reading is for rich people." Honestly, I can't make that stuff up. Isn't that crazy?) Anyway, I was reading a short story to my class last Wednesday, called "The Right Kind of House," and used different voices for the characters...a deep, gruff voice for Mr. Waterbury, and for the part of Sadie Grimes, I used this really crackly, gnarly sounding old- lady voice. When I looked out at my class to make sure they were following along, they were all staring at me, some with open mouthed wonder. Several times throughout the story, I looked up...and the entire class was still staring. I tried not to crack up, but knew I had them! And I was doing my job. The post reading activity went great, the kids delved into theme, protagonist, antagonist, plot...everything you'd want someone to know, and I even heard some really good original thoughts on their take of things. The following Monday, as we were beginning our next short story, I said to the class, "OK, how about this time when I read, you all follow along and don't just stare at me like you did when I read our last short story!" The kids cracked up, and said, "It was that old lady voice! It was so awesome! I never had anyone read a story like that aloud before!"
And that, my friends, is why I teach at alternative high school. They can really appreciate something that a lot of kids were able to take for granted growing up. An adult, taking the time, to read to them. Shouldn't every kid have that? So if they didn't get it at six, I'm gonna give it to them at sixteen. It's never too late to become a reader.
Tuesday, September 23, 2014
Wednesday, September 10, 2014
Yesterday I had my first taxol treatment....the first 30-40 minute infusion was straight Benadryl...then 2 other little infusions, then the decadron, the steroid to help prevent nausea, and finally the taxol, a full one hour infusion. My total appointment time yesterday; about 3 and 1/2 hours. Just glad I don't have to go back the next day for a shot. I will say, that Benadryl pretty much knocked me out. I felt bad for my mom, instead of having me to visit with, she was pretty much relegated to foot shaker if I began snoring...luckily, I didn't. I would have been so embarrassed! They made such a big deal about a possible allergic reaction, which would have been an anaphalyctic one...they even had an oxygen machine behind me just in case. Luckily, no reaction. That's what the Benadryl is about.
Last week I was so happy for Friday. I was really glad to be back to work, with my students, and I had a really good first week, but I was pretty tired. My sub told me on Monday how he couldn't believe how tired he was, it was the most tired he could remember being. We had a good laugh about how a lot of people don't get how exhausting being "on stage" all day long can be. It's the talking, and reading, and just being fully present that does it. But, it's so worth it. I was lucky, working mornings only afforded me the opportunity to miss the extreme heat of Friday afternoon...when I left at 11:30 on Friday, it was already 88 degrees in my classroom...it was well above that when school let out Friday. This week is supposed to be better, and for that, I'm grateful. Working without air conditioning is a challenge, something we had in our old building...last year.it was something I had to adapt to. Extreme heat plus chemo...not the best combination. Today it felt about perfect in my room. I went in and worked the second half of the day, taught my afternoon classes and let my sub teach my morning ones. I did that because I wasn't sure how I'd feel this morning after my treatment yesterday, and also for the chance to be with my last two classes. I think I will do this each Wednesday of this first marking period. I think it's also best for the kids.
Several of my students told me they liked the hair I was wearing today best...it reminded them the most of my old hair. I said, "You mean my wig?" They all said it looked really nice. I told them that this morning I cut the bangs on it, and they all said it looked great. One kid said, "A-plus, Mrs. Csage." Another girl said, "I thought the one you wore on the first day of school looked a lot like your old hair. I didn't even know that was a wig." I told her it was because I thought it was most similar to my old color, right down to the dark roots. I shared with the class that the hardest thing about the whole wig thing was that none of them really looked like my old hair, and the hardest thing is looking in the mirror and seeing someone different looking back. Like I said earlier, I've been very up front about my situation with my kids, and because of that, I think I've gotten respect from my students. They all have been really understanding with my working half days...several ask me how I'm doing and how I'm feeling...there's a lot of empathy in my little alternative school. Empathy from kids who live in homes and faces challenges every day that most of us can't even comprehend. They make me proud to be their teacher.
This Saturday, speaking of wigs, I woke up at 5 in the morning and couldn't get back to sleep...I had something weighing on my mind...I needed to wash my wigs. I decided to just get up and do it. I got my instruction guide out, and filled both bathroom sinks with water. In one sink, I put the wig shampoo. In the other, the wig conditioner. I then took a wig, and swished it around the shampoo for a few minutes. It had to be rinsed, and because I'd set up the drying station in the bath tub, that left the shower. I turned on the shower, and holding it under the spray, rinsed it out. I was pretty wet myself, then took the wig to soak in the conditioner. Got the next wig, shampooed it, got the one out of the conditioner, turned on the shower again, rinsed it really well, wrung it out gently, and put it on a wig stand, in the tub to dry. I did this for five wigs...I had to save the sixth one to wear that day. About half way through, Steve yelled at me, "What are you doing?" I told him I was washing my wigs, go back to sleep. I think he thought I was crazy. I had no idea how long it would take them to dry, and truthfully, I was hoping that this didn't ruin them. I also took my two wigs that were tight and uncomfortable, and stretched them out. By the time I was done, I was soaked and my floor was drenched. Oh well, it needed to be mopped anyway. That night, I took each one and combed them out by hand...it was a pretty long process, and you can't comb a wet wig, but now each wig is good for roughly another 7 wearings each before needing to be washed again, and the stretched out one fits beautifully now, and is the one given an "A plus" by my student today. I'm glad I didn't give up on it, and took the time to try to stretch it and make it fit. It might even be my most comfortable wig!
Last week I was so happy for Friday. I was really glad to be back to work, with my students, and I had a really good first week, but I was pretty tired. My sub told me on Monday how he couldn't believe how tired he was, it was the most tired he could remember being. We had a good laugh about how a lot of people don't get how exhausting being "on stage" all day long can be. It's the talking, and reading, and just being fully present that does it. But, it's so worth it. I was lucky, working mornings only afforded me the opportunity to miss the extreme heat of Friday afternoon...when I left at 11:30 on Friday, it was already 88 degrees in my classroom...it was well above that when school let out Friday. This week is supposed to be better, and for that, I'm grateful. Working without air conditioning is a challenge, something we had in our old building...last year.it was something I had to adapt to. Extreme heat plus chemo...not the best combination. Today it felt about perfect in my room. I went in and worked the second half of the day, taught my afternoon classes and let my sub teach my morning ones. I did that because I wasn't sure how I'd feel this morning after my treatment yesterday, and also for the chance to be with my last two classes. I think I will do this each Wednesday of this first marking period. I think it's also best for the kids.
Several of my students told me they liked the hair I was wearing today best...it reminded them the most of my old hair. I said, "You mean my wig?" They all said it looked really nice. I told them that this morning I cut the bangs on it, and they all said it looked great. One kid said, "A-plus, Mrs. Csage." Another girl said, "I thought the one you wore on the first day of school looked a lot like your old hair. I didn't even know that was a wig." I told her it was because I thought it was most similar to my old color, right down to the dark roots. I shared with the class that the hardest thing about the whole wig thing was that none of them really looked like my old hair, and the hardest thing is looking in the mirror and seeing someone different looking back. Like I said earlier, I've been very up front about my situation with my kids, and because of that, I think I've gotten respect from my students. They all have been really understanding with my working half days...several ask me how I'm doing and how I'm feeling...there's a lot of empathy in my little alternative school. Empathy from kids who live in homes and faces challenges every day that most of us can't even comprehend. They make me proud to be their teacher.
This Saturday, speaking of wigs, I woke up at 5 in the morning and couldn't get back to sleep...I had something weighing on my mind...I needed to wash my wigs. I decided to just get up and do it. I got my instruction guide out, and filled both bathroom sinks with water. In one sink, I put the wig shampoo. In the other, the wig conditioner. I then took a wig, and swished it around the shampoo for a few minutes. It had to be rinsed, and because I'd set up the drying station in the bath tub, that left the shower. I turned on the shower, and holding it under the spray, rinsed it out. I was pretty wet myself, then took the wig to soak in the conditioner. Got the next wig, shampooed it, got the one out of the conditioner, turned on the shower again, rinsed it really well, wrung it out gently, and put it on a wig stand, in the tub to dry. I did this for five wigs...I had to save the sixth one to wear that day. About half way through, Steve yelled at me, "What are you doing?" I told him I was washing my wigs, go back to sleep. I think he thought I was crazy. I had no idea how long it would take them to dry, and truthfully, I was hoping that this didn't ruin them. I also took my two wigs that were tight and uncomfortable, and stretched them out. By the time I was done, I was soaked and my floor was drenched. Oh well, it needed to be mopped anyway. That night, I took each one and combed them out by hand...it was a pretty long process, and you can't comb a wet wig, but now each wig is good for roughly another 7 wearings each before needing to be washed again, and the stretched out one fits beautifully now, and is the one given an "A plus" by my student today. I'm glad I didn't give up on it, and took the time to try to stretch it and make it fit. It might even be my most comfortable wig!
Thursday, September 4, 2014
This week I'm grateful to be back to work, even if it is on a modified day. The effects of last Tuesday's chemo treatment hit me this weekend, especially Sunday and Monday, but I knew I had to get up Tuesday and put on a brave face. I got up extra early, even though technically I have less to do to get ready, mainly my hair...it's a good thing I planned it like that. Shower...lay on the bed. Get dressed...lay on the bed. Then, I made the mistake of taking some of my meds without eating first, and got sick to my stomach...not a great way to start the new school year. Somehow, I made it.
Anyone who has looked at my Facebook page may have noticed that one of my students, Luke, shaved his head in honor of me. He is the brother of Amber, another student (graduate) that I've written about, and he and his family have been so supportive of me and what I've been going through. I saw Luke Tuesday morning and gave him a hug...he told some kids that he did it for me...it was a pretty humbling moment, and I think a lot of the other students thought that was a pretty worthy thing that he had done. I joked in front of the kids that "that's what my head looks like." I just want to be up front with the kids and let them know that I AM wearing a wig. I DO have cancer. I AM undergoing chemo treatments...even will have them on days that I teach. But I also want them to know that I'm going to get through this, and I'm there in the morning, because I care about them. And please, don't mind the special bathroom stall with my name one it, with a big fat sign that I made saying "kids- do not use! Mrs. Csage only!" I can't believe no one has asked me about that. By the way, after a chemo treatment, you excrete the chemotherapy for up to 48 hours afterwards, so it's just a precaution for the kids. Our secretary and custodian decorated the inside of my stall... A shelf installed, floral arrangement and wipes...hilarious! Anything to bring a little cheer...even into the ladies' restroom 😊
I keep getting crazy gifts...crazy in a good way. My mom and dad bought me a Pandora bracelet to celebrate the end of the A/C, with a good luck charm on ot. I love it. A high school friend of my husband, also a breast cancer survivor, sent us a huge gift certificate to a local restaurant, with a knowing note about not feeling up to cooking when going back to work. Steve and I just looked at each other...it was our first day back last week, before kids, and realized neither one of us had gotten something out for that evening...we used that gift card that night...it was like some kind of sign for us to do that. My Aunt Susie brought me some meals over yesterday, knowing that when school started up...it was awesome. And today at work, a 2014 graduate and his mom, Dawn, who I just adore, sent me two pedicures...one for me, and one for my mom, at a beauty shop up the road from my house. I was so blown away with the thoughtfulness of everyone mentioned above. But one more thing:
Last week we had an open hope for back to school. And waiting for me, in my classroom, was a giant bouquet of yellow balloons, a yellow flower (keeping the sunshine going, says Sabrena), and a huge card with personalized messages from all of our returning students, to me, as they came in to enroll for this upcoming school year. Probably the most amazing note was from a graduate who apologized to me, said she regretted that she wasn't nicer to me last year, found me on Facebook, and apologized AGAIN! People ask me, all of the time, how I can do what I do for a living, with teenagers who can be explosive and rude, sometimes even mean...it's because of moments like that. When you see someone take ownership of a past wrong, and do everything in their power to make it right, it's totally worth it. I never think a kid is truly bad, just their actions...and we can all change and want to be better people. If it takes someone's teacher being diagnosed with cancer to make them think that maybe they better set something right? Then, Why not?
Today I came home and crashed...could barely make the drive home from school without falling asleep. I think it's because I pushed myself yesterday, insisted on teaching almost the whole day, just to make sure the kids got off on the right track. I think this marking period will go a lot smoother with my sub, Clive, and he is super dependable, and the kids really like him. However.... I just want to make sure my afternoon kids are getting the same kind of education as my morning kids...but, it is only for six weeks...hopefully, after my first few Taxol treatments, I'll get into a rhythm with my body and symptoms...hopefully, less than the A/C...but only time will tell. Happy back to school, everyone!
Anyone who has looked at my Facebook page may have noticed that one of my students, Luke, shaved his head in honor of me. He is the brother of Amber, another student (graduate) that I've written about, and he and his family have been so supportive of me and what I've been going through. I saw Luke Tuesday morning and gave him a hug...he told some kids that he did it for me...it was a pretty humbling moment, and I think a lot of the other students thought that was a pretty worthy thing that he had done. I joked in front of the kids that "that's what my head looks like." I just want to be up front with the kids and let them know that I AM wearing a wig. I DO have cancer. I AM undergoing chemo treatments...even will have them on days that I teach. But I also want them to know that I'm going to get through this, and I'm there in the morning, because I care about them. And please, don't mind the special bathroom stall with my name one it, with a big fat sign that I made saying "kids- do not use! Mrs. Csage only!" I can't believe no one has asked me about that. By the way, after a chemo treatment, you excrete the chemotherapy for up to 48 hours afterwards, so it's just a precaution for the kids. Our secretary and custodian decorated the inside of my stall... A shelf installed, floral arrangement and wipes...hilarious! Anything to bring a little cheer...even into the ladies' restroom 😊
I keep getting crazy gifts...crazy in a good way. My mom and dad bought me a Pandora bracelet to celebrate the end of the A/C, with a good luck charm on ot. I love it. A high school friend of my husband, also a breast cancer survivor, sent us a huge gift certificate to a local restaurant, with a knowing note about not feeling up to cooking when going back to work. Steve and I just looked at each other...it was our first day back last week, before kids, and realized neither one of us had gotten something out for that evening...we used that gift card that night...it was like some kind of sign for us to do that. My Aunt Susie brought me some meals over yesterday, knowing that when school started up...it was awesome. And today at work, a 2014 graduate and his mom, Dawn, who I just adore, sent me two pedicures...one for me, and one for my mom, at a beauty shop up the road from my house. I was so blown away with the thoughtfulness of everyone mentioned above. But one more thing:
Last week we had an open hope for back to school. And waiting for me, in my classroom, was a giant bouquet of yellow balloons, a yellow flower (keeping the sunshine going, says Sabrena), and a huge card with personalized messages from all of our returning students, to me, as they came in to enroll for this upcoming school year. Probably the most amazing note was from a graduate who apologized to me, said she regretted that she wasn't nicer to me last year, found me on Facebook, and apologized AGAIN! People ask me, all of the time, how I can do what I do for a living, with teenagers who can be explosive and rude, sometimes even mean...it's because of moments like that. When you see someone take ownership of a past wrong, and do everything in their power to make it right, it's totally worth it. I never think a kid is truly bad, just their actions...and we can all change and want to be better people. If it takes someone's teacher being diagnosed with cancer to make them think that maybe they better set something right? Then, Why not?
Today I came home and crashed...could barely make the drive home from school without falling asleep. I think it's because I pushed myself yesterday, insisted on teaching almost the whole day, just to make sure the kids got off on the right track. I think this marking period will go a lot smoother with my sub, Clive, and he is super dependable, and the kids really like him. However.... I just want to make sure my afternoon kids are getting the same kind of education as my morning kids...but, it is only for six weeks...hopefully, after my first few Taxol treatments, I'll get into a rhythm with my body and symptoms...hopefully, less than the A/C...but only time will tell. Happy back to school, everyone!
Friday, August 29, 2014
This was a milestone week on many fronts. On Tuesday, I officially went back to work. Every year, the teachers go back a week ahead of the kids for inservice. The first day is a big one...all of the employees of our district meet, and for the last few years, it's been at the Nazarene Church on M-50. It's nice to meet there...it's comfortable, air conditioned (we had a heat index of 95 degrees that day), and you get to see everyone from all of the other buildings. It's also very motivating, as they have excellent guest speakers for us to listen to. It was also very emotional for me, as I saw a lot of people who knew about my condition, but hadn't seen me in person...lots of hugs, lots of "how are you feeling," and everything in between...it was hard to keep a dry eye for a lot of the morning. It was good to be back. It felt normal, and normal is good.
The next milestone occurred that same Tuesday afternoon...I completed my last A/C bi-weekly chemo treatment. The nurses brought me a gift from Allegiance...it seems their massage therapists and estheticians have been undergoing special training for cancer patients, and I was given a facial and lymphatic massage...for free! I was pretty blown away at the gesture...they even gave one to my mom, too, as she's been to most of my treatments with me. I chose to do the chemo first...the biggest reason was the first four rounds of A/C are supposed to be the most difficult...I still have to get through the effects of the next two weeks, but I know I'll get through it... Bring on the Taxol!
The next day, Wednesday...inservice in my own building. I'd gotten some pretty awesome news about my start of this school year...I have a substitute teacher that will be with me every day for the first six weeks of school...our first marking period. He's a man I've known for years, subbed in our building, and the kids are very fond of him, and he will be there all day...I will teach my first two classes (we are on a five hour day, I teach four classes and have one period for planning...my schedule happens to be teach the first two, plan, and teach the last two). My sub will teach my last two hours...I will give him all the work and guidance he needs during our morning planning...he will do all the class stuff and take that stress off my shoulders. It couldn't have worked out any better than this. Basically, about a week ago I had a meltdown...literally, when I left school, worrying about working full time...the heat of the classroom in the afternoon with no air conditioning, in a wig, and going through a new chemo regimen which, though said to be easier, is still unknown...Unfortunately, my mom was on the other end of the phone when I had it. She just listened, let me rant rave and cry, and didn't judge...I took a bath to relax, and came up with the idea of teaching mornings only...to start...and am so relieved it's come together, I about cried from gratitude. If I'm not able to make it in one morning...he will be there. If I'm sick and have to leave early...he will be there. Bless my principal and superintendent for allowing this to happen...it's a huge weight off my shoulders. I can't wait for Tuesday, and the chance to make this happen!
Wednesday afternoon was my next milestone...my last neulasta shot. When I start Taxol, no added shots...unless needed. However, I did get an earful about my next regiment...I'm not allowed to drive myself, because half of my infusion is a big old dose of Benadryl to ward off allergic reactions...they are afraid to let you drive, so I have to have a driver. Ok, no big deal, I'll let my mom pick me up...she's more than willing, I'll take her up on her offer. Also, upcoming side effects to look forward to...neuropathy in hands and feet seem to be pretty common...also, more hair loss, including the possibility of the eyebrows and eyelashes...I still have all my body hair, and that's on the list, too...however, my leg hair growth has severely slowed down. I've gone from shaving my legs every day, to about every five...I have so little to do in the shower, I used to be in there forever...do you know how long it took to rinse my hair from shampoo and conditioner alone? And shave every day? I will say, if there are any positive things about chemo, is it's definitely giving me a little extra time in the morning...except when you figure in all the time it takes to apply all that self tanner business...oh well, it all evens out. I'm taking this weekend to relax, rest, and mentally prepare for the start of school. My fellow teachers and I planned an amazing "getting to know you" activity that we will do with all of our students at once...it was so energizing to be back to planning and preparing...I think I'm finally ready to go back to school!
The next milestone occurred that same Tuesday afternoon...I completed my last A/C bi-weekly chemo treatment. The nurses brought me a gift from Allegiance...it seems their massage therapists and estheticians have been undergoing special training for cancer patients, and I was given a facial and lymphatic massage...for free! I was pretty blown away at the gesture...they even gave one to my mom, too, as she's been to most of my treatments with me. I chose to do the chemo first...the biggest reason was the first four rounds of A/C are supposed to be the most difficult...I still have to get through the effects of the next two weeks, but I know I'll get through it... Bring on the Taxol!
The next day, Wednesday...inservice in my own building. I'd gotten some pretty awesome news about my start of this school year...I have a substitute teacher that will be with me every day for the first six weeks of school...our first marking period. He's a man I've known for years, subbed in our building, and the kids are very fond of him, and he will be there all day...I will teach my first two classes (we are on a five hour day, I teach four classes and have one period for planning...my schedule happens to be teach the first two, plan, and teach the last two). My sub will teach my last two hours...I will give him all the work and guidance he needs during our morning planning...he will do all the class stuff and take that stress off my shoulders. It couldn't have worked out any better than this. Basically, about a week ago I had a meltdown...literally, when I left school, worrying about working full time...the heat of the classroom in the afternoon with no air conditioning, in a wig, and going through a new chemo regimen which, though said to be easier, is still unknown...Unfortunately, my mom was on the other end of the phone when I had it. She just listened, let me rant rave and cry, and didn't judge...I took a bath to relax, and came up with the idea of teaching mornings only...to start...and am so relieved it's come together, I about cried from gratitude. If I'm not able to make it in one morning...he will be there. If I'm sick and have to leave early...he will be there. Bless my principal and superintendent for allowing this to happen...it's a huge weight off my shoulders. I can't wait for Tuesday, and the chance to make this happen!
Wednesday afternoon was my next milestone...my last neulasta shot. When I start Taxol, no added shots...unless needed. However, I did get an earful about my next regiment...I'm not allowed to drive myself, because half of my infusion is a big old dose of Benadryl to ward off allergic reactions...they are afraid to let you drive, so I have to have a driver. Ok, no big deal, I'll let my mom pick me up...she's more than willing, I'll take her up on her offer. Also, upcoming side effects to look forward to...neuropathy in hands and feet seem to be pretty common...also, more hair loss, including the possibility of the eyebrows and eyelashes...I still have all my body hair, and that's on the list, too...however, my leg hair growth has severely slowed down. I've gone from shaving my legs every day, to about every five...I have so little to do in the shower, I used to be in there forever...do you know how long it took to rinse my hair from shampoo and conditioner alone? And shave every day? I will say, if there are any positive things about chemo, is it's definitely giving me a little extra time in the morning...except when you figure in all the time it takes to apply all that self tanner business...oh well, it all evens out. I'm taking this weekend to relax, rest, and mentally prepare for the start of school. My fellow teachers and I planned an amazing "getting to know you" activity that we will do with all of our students at once...it was so energizing to be back to planning and preparing...I think I'm finally ready to go back to school!
Friday, August 22, 2014
I went to the doctor yesterday to have a few things checked out...first off, let me just say that when you are a cancer patient, you don't just "go to the doctor"... You go to your oncologist, after first calling their triage nurse...who relays all your info to your team...who then determines what to do with you. My symptoms? A cough, and a sore throat. I got an appointment for the next day, at 3:15. I didn't realize that just stopping in for those symptoms was the equivalent of having a normal visit with them...which meant having to go through all the intake stuff I've talked about before...the blood draw...the blood pressure...the dreaded weigh-in...the temperature check. Then, the meeting with the person to go over your meds and issues...etc. a full 25 minutes is given for pre-check stuff...and you still haven't seen the doctor!
What I learned is that my white blood count is dangerously low...in fact, a lot of my counts are low. I'm actually a fever away from being hospitalized on IV antibiotics. I was pretty stunned. This, she explained, is why I've had such a hard time this round, and haven't bounced back like I did my second round. Now, this was nothing like my first round, which was very difficult, but still, I've been very fatigued and to-the-bone tired. Change the bed...have to lay on it. Change a few pillowcases, have to lay down again. I went to my son Drake's first soccer scrimmage last Friday, was too tired to make it to the second one at 7:45 at night...I think I was sleeping in bed at 8:00...and didn't leave the house until Tuesday. Tired. Worn out. And feeling, somehow, guilty about it. And even when I did go out on Tuesday, it was brief. Same on Wednesday, I went into school and to Meijer's...Then on Thursday, Steve and I went out for lunch and did a little shopping before my doctor's appointment...tired me right out.
I told my doctor I thought I did everything right this time, I'd learned from the first round...I drank plenty of fluids...took my Claritin...ate regularly and pretty healthfully...got plenty of rest...she said, quite simply, "it's the chemo. You really can't predict what it will do. The neulasta shot is supposed to help with your blood count levels...but...it's chemo." Hard lesson learned...again, you just can't predict...or plan...or suppose to know...how you are going to be a week from Wednesday....even though maybe two weeks ago, you were fine, this time can be different.
So, long story short, I'm on two antibiotics...one as a preventive measure so I DON'T end up in the hospital, and the other for my cough/sore throat thing. They don't mess around when you're doing chemotherapy...but the best part is, she thinks I'll be better this weekend. That's definitely good news.
I haven't written before now, and this is probably the longest between blogs that I've gone, because truthfully, I didn't feel there was much to write about. Ooohhhh, I've been home. I've been watching tv. I've read a few books. I've been really tired. Even that bores me. But also, there is something I'd like to say to all people who are having a conversation with a person going through cancer... Please don't ask them when they will know if their treatment is having any effect...personally, I'm 6 weeks in of a 20 week chemo regimen. I don't even want to entertain the idea that I've lost my hair, my energy and my SUMMER....for perhaps nothing. I want to believe that what I'm doing is KILLING my CANCER, that my team of doctors know what they are doing, and at the end of this, I will reap the prize...no, not Ed McMahon showing up at my door, though I order enough magazines to totally justify a visit...THE prize, of course, being I get to have my life back. Because right now, it doesn't feel a whole lot like my life...it feels like someone else's....someone who has to avoid the sun, is bald, and when she goes out feels like she's wearing a costume on her head....ask anyone, I never wanted to dress up for Halloween, wear a hat, or basically do anything that didn't allow me to feel like myself. Well....the joke's on me now, because every day is October 31st around here. From Saturday to Monday, I was bald around the house, with an occasional bandana thrown in for company. Tuesday was the first day I put on a wig in several days, and after about 3 hours, I just had to get it off my head. Same with Wednesday and Thursday...too tight, too hot, too too too...fill in the blank, it would probably fit. I wore my brunette wig yesterday at the doctor's office...they all loved it. They are so nice there, like I've said before, for a terrible place to be, they sure try to make it as pleasant as possible. One more round of the A C. Then the Taxol. I can do this.
What I learned is that my white blood count is dangerously low...in fact, a lot of my counts are low. I'm actually a fever away from being hospitalized on IV antibiotics. I was pretty stunned. This, she explained, is why I've had such a hard time this round, and haven't bounced back like I did my second round. Now, this was nothing like my first round, which was very difficult, but still, I've been very fatigued and to-the-bone tired. Change the bed...have to lay on it. Change a few pillowcases, have to lay down again. I went to my son Drake's first soccer scrimmage last Friday, was too tired to make it to the second one at 7:45 at night...I think I was sleeping in bed at 8:00...and didn't leave the house until Tuesday. Tired. Worn out. And feeling, somehow, guilty about it. And even when I did go out on Tuesday, it was brief. Same on Wednesday, I went into school and to Meijer's...Then on Thursday, Steve and I went out for lunch and did a little shopping before my doctor's appointment...tired me right out.
I told my doctor I thought I did everything right this time, I'd learned from the first round...I drank plenty of fluids...took my Claritin...ate regularly and pretty healthfully...got plenty of rest...she said, quite simply, "it's the chemo. You really can't predict what it will do. The neulasta shot is supposed to help with your blood count levels...but...it's chemo." Hard lesson learned...again, you just can't predict...or plan...or suppose to know...how you are going to be a week from Wednesday....even though maybe two weeks ago, you were fine, this time can be different.
So, long story short, I'm on two antibiotics...one as a preventive measure so I DON'T end up in the hospital, and the other for my cough/sore throat thing. They don't mess around when you're doing chemotherapy...but the best part is, she thinks I'll be better this weekend. That's definitely good news.
I haven't written before now, and this is probably the longest between blogs that I've gone, because truthfully, I didn't feel there was much to write about. Ooohhhh, I've been home. I've been watching tv. I've read a few books. I've been really tired. Even that bores me. But also, there is something I'd like to say to all people who are having a conversation with a person going through cancer... Please don't ask them when they will know if their treatment is having any effect...personally, I'm 6 weeks in of a 20 week chemo regimen. I don't even want to entertain the idea that I've lost my hair, my energy and my SUMMER....for perhaps nothing. I want to believe that what I'm doing is KILLING my CANCER, that my team of doctors know what they are doing, and at the end of this, I will reap the prize...no, not Ed McMahon showing up at my door, though I order enough magazines to totally justify a visit...THE prize, of course, being I get to have my life back. Because right now, it doesn't feel a whole lot like my life...it feels like someone else's....someone who has to avoid the sun, is bald, and when she goes out feels like she's wearing a costume on her head....ask anyone, I never wanted to dress up for Halloween, wear a hat, or basically do anything that didn't allow me to feel like myself. Well....the joke's on me now, because every day is October 31st around here. From Saturday to Monday, I was bald around the house, with an occasional bandana thrown in for company. Tuesday was the first day I put on a wig in several days, and after about 3 hours, I just had to get it off my head. Same with Wednesday and Thursday...too tight, too hot, too too too...fill in the blank, it would probably fit. I wore my brunette wig yesterday at the doctor's office...they all loved it. They are so nice there, like I've said before, for a terrible place to be, they sure try to make it as pleasant as possible. One more round of the A C. Then the Taxol. I can do this.
Wednesday, August 13, 2014
Treatment number 3 of 4 is complete of the adriamycin and cytoxan. In two more weeks I'll have my last bi-weekly treatment. These are the only treatments where I have to go back the next day for the neulasta shot. On September 9th I start my first of 12 weekly taxol treatments. I've scheduled the first two to coordinate with my work schedule...I figure that will give me enough time to let me know how my body reacts to the new drug.... I sure hope I can handle working and undergoing chemo at the same time.
This week Steve and I went on a pretty nice bike ride. We started out on the Falling Waters Trail, rode into town, and around lower Essex Heights. The bad roads seem to be everywhere, even in that lovely southwest city neighborhood near where we used to live. I still love that part of town, and part of me misses living in the city, so close to everything. (Ok, I only live two miles away from there, it's not like I moved out to the middle of nowhere, but still...) on our ride we ran into a couple we know. Our sons played sports together at Jackson High, and it was nice catching up with them. I was talking mainly to Di, and Steve was talking to her husband. Our bikes were kind of blocking the path, but not too terribly. Di asked how I was doing, and I remembered that she was a breast cancer survivor... 10 years, to be exact. She was such an inspiration to me...she went through everything I'm going through now...she even showed me her lumpectomy, which is barely noticeable under her arm, same area as mine. And, she worked through it all. She even had her boys help shave her head to get them involved and not freak at the whole bald thing...It was cute, she told her husband, "Hey, Kim's going through what we went through." Her husband said, "What did we go through?" Men! She said, "Kim has breast cancer and is going through chemo right now." I mentioned to him that was why I was bald...I was wearing my bright yellow bandana from my sunshine basket, some big hoop earrings, and that was it. Her husband said, "I didn't even notice you were bald...I just thought you looked kind of spunky!" Ok...men...sometimes you've just got to forgive them! :). The truth is, I had agonized over what to wear that morning, going for a bike ride. While I normally wear bandanas, or just go bald, in the house, I had yet to LEAVE the house without a wig. You know what? It felt liberating. And comfortable. And, it absorbs your sweat when exercising....lesson learned.
My dad decided that he wanted to go with me to my treatment yesterday, to see more of what I'm going through. My parents have both been great through this...we visited, watched tv, and talked to Tracy my nurse as she changed my meds as needed. We then went to lunch afterwards...Steve, my dad, and I. That's becoming a regular routine, chemo, then lunch, as I'm starved! I just realized that after my last treatment my mom and I went to one-five-one...and now they have closed. I kind of liked that place...I know my in-laws are sitting on gift certificates that I bet they never get to redeem. It would be nice if some other establishment stepped up, even if they offered 25-50% of the value just to get you in the door as a new customer...maybe Bella Notte? Hint, hint... ;)
Today I learned that my potassium levels are still running low, even though I'm taking a supplement...the doctor has ordered me to take it twice a day to get it raised. I've got a list of potassium-rich foods to try to eat more of...I just really don't like bananas, and they say probably one banana a day would do it...ugh! I'll go with the avocado, chicken, and lean beef and milk, baked potatoes with skins...we'll see how that works. I'm sick of taking pills...though my doctor told me yesterday that if I wanted to try it, I could take half of my decadron the next few days, one pill instead of two... I told her how it doesn't let me sleep and gets me all wired up... I might just try that tomorrow.
So today, after my shot, I went to the Westwood Mall because my friend Janie told me that in the old Crown and Carriage store is a store that has wigs. I was pleasantly surprised, chose two to try, and went into a separate, private room with beauty shop chairs and mirrors. The lady working said they did the privacy factor because they have a lot of cancer patients buying wigs...I whipped off my wig, and said "Yep. That's me." She tried on my first one, a shoulder length, kind of side-swept multi-tonal blonde...and I really liked it. The price? $49.99. I tried on the second one...a shoulder length multi-tonal blonde with beach waves...looks very casual, like your waves were air dried. Price? $39.99. As you can guess, I bought them both, bringing my wig family up to six. I spent an hour this morning trimming, combing, and cutting three of my wigs...they were just too long, and getting kind of matted underneath...and not that easy to comb out. The lady at the wig store told me my body heat reacts with the synthetic fibers and mats them...shorter must be better! I will say I'm getting more used to wearing a wig... I'm more confident that they aren't going to blow off...I've even been riding in my car with the windows down! How's that for confidence?
I'm still getting wonderful cards in the mail, and last week friends of ours made us a wonderful dinner and brought it to our home...thanks Kyro's. Your chicken enchiladas were wonderful, and we really appreciated them... You have no idea what that meant to us. And I have gotten more Facebook friend requests than ever before...I wonder if news of my diagnosis is spreading? Especially among my former students! I always tell them I won't friend me while you're currently a student, but friend me after you graduate and I'm happy to comply! I love seeing how they are doing in their lives, and many are so caring and compassionate...this is for you, Amber...you've been nothing but caring and compassionate in your messages to me, and I'll never forget that. Thank you for your concern. Give that baby a kiss for me, and best thoughts for your mother in her own cancer battle. Us cancer patients have to stick together, be supportive, and above all, BE POSITIVE. That's the only way to be.
This week Steve and I went on a pretty nice bike ride. We started out on the Falling Waters Trail, rode into town, and around lower Essex Heights. The bad roads seem to be everywhere, even in that lovely southwest city neighborhood near where we used to live. I still love that part of town, and part of me misses living in the city, so close to everything. (Ok, I only live two miles away from there, it's not like I moved out to the middle of nowhere, but still...) on our ride we ran into a couple we know. Our sons played sports together at Jackson High, and it was nice catching up with them. I was talking mainly to Di, and Steve was talking to her husband. Our bikes were kind of blocking the path, but not too terribly. Di asked how I was doing, and I remembered that she was a breast cancer survivor... 10 years, to be exact. She was such an inspiration to me...she went through everything I'm going through now...she even showed me her lumpectomy, which is barely noticeable under her arm, same area as mine. And, she worked through it all. She even had her boys help shave her head to get them involved and not freak at the whole bald thing...It was cute, she told her husband, "Hey, Kim's going through what we went through." Her husband said, "What did we go through?" Men! She said, "Kim has breast cancer and is going through chemo right now." I mentioned to him that was why I was bald...I was wearing my bright yellow bandana from my sunshine basket, some big hoop earrings, and that was it. Her husband said, "I didn't even notice you were bald...I just thought you looked kind of spunky!" Ok...men...sometimes you've just got to forgive them! :). The truth is, I had agonized over what to wear that morning, going for a bike ride. While I normally wear bandanas, or just go bald, in the house, I had yet to LEAVE the house without a wig. You know what? It felt liberating. And comfortable. And, it absorbs your sweat when exercising....lesson learned.
My dad decided that he wanted to go with me to my treatment yesterday, to see more of what I'm going through. My parents have both been great through this...we visited, watched tv, and talked to Tracy my nurse as she changed my meds as needed. We then went to lunch afterwards...Steve, my dad, and I. That's becoming a regular routine, chemo, then lunch, as I'm starved! I just realized that after my last treatment my mom and I went to one-five-one...and now they have closed. I kind of liked that place...I know my in-laws are sitting on gift certificates that I bet they never get to redeem. It would be nice if some other establishment stepped up, even if they offered 25-50% of the value just to get you in the door as a new customer...maybe Bella Notte? Hint, hint... ;)
Today I learned that my potassium levels are still running low, even though I'm taking a supplement...the doctor has ordered me to take it twice a day to get it raised. I've got a list of potassium-rich foods to try to eat more of...I just really don't like bananas, and they say probably one banana a day would do it...ugh! I'll go with the avocado, chicken, and lean beef and milk, baked potatoes with skins...we'll see how that works. I'm sick of taking pills...though my doctor told me yesterday that if I wanted to try it, I could take half of my decadron the next few days, one pill instead of two... I told her how it doesn't let me sleep and gets me all wired up... I might just try that tomorrow.
So today, after my shot, I went to the Westwood Mall because my friend Janie told me that in the old Crown and Carriage store is a store that has wigs. I was pleasantly surprised, chose two to try, and went into a separate, private room with beauty shop chairs and mirrors. The lady working said they did the privacy factor because they have a lot of cancer patients buying wigs...I whipped off my wig, and said "Yep. That's me." She tried on my first one, a shoulder length, kind of side-swept multi-tonal blonde...and I really liked it. The price? $49.99. I tried on the second one...a shoulder length multi-tonal blonde with beach waves...looks very casual, like your waves were air dried. Price? $39.99. As you can guess, I bought them both, bringing my wig family up to six. I spent an hour this morning trimming, combing, and cutting three of my wigs...they were just too long, and getting kind of matted underneath...and not that easy to comb out. The lady at the wig store told me my body heat reacts with the synthetic fibers and mats them...shorter must be better! I will say I'm getting more used to wearing a wig... I'm more confident that they aren't going to blow off...I've even been riding in my car with the windows down! How's that for confidence?
I'm still getting wonderful cards in the mail, and last week friends of ours made us a wonderful dinner and brought it to our home...thanks Kyro's. Your chicken enchiladas were wonderful, and we really appreciated them... You have no idea what that meant to us. And I have gotten more Facebook friend requests than ever before...I wonder if news of my diagnosis is spreading? Especially among my former students! I always tell them I won't friend me while you're currently a student, but friend me after you graduate and I'm happy to comply! I love seeing how they are doing in their lives, and many are so caring and compassionate...this is for you, Amber...you've been nothing but caring and compassionate in your messages to me, and I'll never forget that. Thank you for your concern. Give that baby a kiss for me, and best thoughts for your mother in her own cancer battle. Us cancer patients have to stick together, be supportive, and above all, BE POSITIVE. That's the only way to be.
Thursday, August 7, 2014
This week I feel like the old "Fat equals Fat" infomercial guru of about 15 years ago, Susan Powter. She was the little bald girl who lost all the weight by claiming "you could eat 32 baked potatoes for the same amount of fat, as say, a piece of cheese. Do you remember her? I don't mean I'm eating dozens of baked potatoes...but, I'm definitely bald. And she had kind of a white head. So do I. After all, my scalp has never seen the sun. But my face and the rest of my body has, so there is this eerie whiteness, kind of glowing at me. I look in the mirror, and am kind of startled to see that hairless being looking back at me. Putting on a wig definitely makes the whole image easier to look at. And wearing a little cap or doo-rag is definitely easier on the eyes, too...but I don't know if I'd ever leave the house without wearing an actual wig.
I feel like when people see me, they aren't sure what to expect... I watch someone's face as they are seeing me in a wig for the first time, and it seems like surprise is the main emotion on their face, more than anything. Surprise that I don't look like a cancer patient. As my friend Anna said to me... "Oh my gosh...you look so good. We didn't think you'd look so good." I'm guessing tv and movies help enhance the image of the emaciated cancer patient, walking with a cane, kind of hunched over and generally sickly looking. I've said it before, and I will say it again... I don't think I look sick. I just think I look like I'm having a bad hair day. But to a bald person, even a bad hair day is better than a no hair day...I'd take my old bad hair days anytime over being hairless... But you never realize how good you've got it, until you don't have it any longer. I told my niece Elisa last night that I'm not judging anyone for their hair anymore, even if it is ugly hair... Because having hair is just something you take for granted. You are lucky if you have it. Period. End of story. I hope I never complain about something as trivial as a bad hair day again.
As of yesterday, I've worn all four of my wigs, including the brunette human hair one. That one was fun, because I got to put a curling iron to it, and style it more than the synthetic ones, where you can just basically mess with the part a little bit and comb it with a large toothed comb. The human hair wig, though dark, really feels like hair. The only thing is, it kind of slips around when brushing it, so it's not quite like having hair that is stuck to your head. But, it is definitely better than nothing.
The cheapest blonde wig feels nice and light. I like it best with a little barrette keeping the bangs out of my eyes. The more expensive blonde wig I spent time cutting with a pair of scissors. It was too long...longer than anything I've ever had naturally, so it too felt like a costume. The reddish one, the Vegas wig my friend gave me, I wore to the lake yesterday. I actually put it into a long ponytail and rode on the pontoon with it. My mom was afraid to give the pontoon any gas because she wondered if my wig would fly off my head... I told her I was pretty sure it wasn't going anywhere, it's hot, let's go fast! And it stayed in place just fine. Live and learn, I guess. I will admit, though, I'm still a little leery to ride in my car with the windows all the way down... You just never know what can happen...
Right now is probably the best part of my two-week cycle of chemo... It's the more "normal" part, where I feel pretty good. I'm sleeping through the night (unlike the 3-4 days right after infusion, where the steroids keep me up all night). I was able to go to Canada with Steve for an overnight at Caesar's Windsor.... I have a decent amount of energy. I have an appetite. I'm feeling pretty positive. And I can say, I only have two of these bi-weekly treatments left. Then, school will start. There is a little uncertainty of how I will handle the next phase of my chemotherapy, the Taxol, for 12 weekly treatments. I hope I continue to have some energy. I hope I can go back to work with enough enthusiasm that my kids deserve. I hope I can make it to Drake's soccer games at night. I hope I can continue to keep a positive attitude throughout this entire ordeal. And, like Red's character, played by Morgan Freeman in the great movie The Shawshank Redemption... A man who has finally been released from prison after 40 some years....he realizes he needs to "get busy living, or get busy dying...." And chooses living.... He says....rather dramatically, I might add... "I Hope." So do I.
I feel like when people see me, they aren't sure what to expect... I watch someone's face as they are seeing me in a wig for the first time, and it seems like surprise is the main emotion on their face, more than anything. Surprise that I don't look like a cancer patient. As my friend Anna said to me... "Oh my gosh...you look so good. We didn't think you'd look so good." I'm guessing tv and movies help enhance the image of the emaciated cancer patient, walking with a cane, kind of hunched over and generally sickly looking. I've said it before, and I will say it again... I don't think I look sick. I just think I look like I'm having a bad hair day. But to a bald person, even a bad hair day is better than a no hair day...I'd take my old bad hair days anytime over being hairless... But you never realize how good you've got it, until you don't have it any longer. I told my niece Elisa last night that I'm not judging anyone for their hair anymore, even if it is ugly hair... Because having hair is just something you take for granted. You are lucky if you have it. Period. End of story. I hope I never complain about something as trivial as a bad hair day again.
As of yesterday, I've worn all four of my wigs, including the brunette human hair one. That one was fun, because I got to put a curling iron to it, and style it more than the synthetic ones, where you can just basically mess with the part a little bit and comb it with a large toothed comb. The human hair wig, though dark, really feels like hair. The only thing is, it kind of slips around when brushing it, so it's not quite like having hair that is stuck to your head. But, it is definitely better than nothing.
The cheapest blonde wig feels nice and light. I like it best with a little barrette keeping the bangs out of my eyes. The more expensive blonde wig I spent time cutting with a pair of scissors. It was too long...longer than anything I've ever had naturally, so it too felt like a costume. The reddish one, the Vegas wig my friend gave me, I wore to the lake yesterday. I actually put it into a long ponytail and rode on the pontoon with it. My mom was afraid to give the pontoon any gas because she wondered if my wig would fly off my head... I told her I was pretty sure it wasn't going anywhere, it's hot, let's go fast! And it stayed in place just fine. Live and learn, I guess. I will admit, though, I'm still a little leery to ride in my car with the windows all the way down... You just never know what can happen...
Right now is probably the best part of my two-week cycle of chemo... It's the more "normal" part, where I feel pretty good. I'm sleeping through the night (unlike the 3-4 days right after infusion, where the steroids keep me up all night). I was able to go to Canada with Steve for an overnight at Caesar's Windsor.... I have a decent amount of energy. I have an appetite. I'm feeling pretty positive. And I can say, I only have two of these bi-weekly treatments left. Then, school will start. There is a little uncertainty of how I will handle the next phase of my chemotherapy, the Taxol, for 12 weekly treatments. I hope I continue to have some energy. I hope I can go back to work with enough enthusiasm that my kids deserve. I hope I can make it to Drake's soccer games at night. I hope I can continue to keep a positive attitude throughout this entire ordeal. And, like Red's character, played by Morgan Freeman in the great movie The Shawshank Redemption... A man who has finally been released from prison after 40 some years....he realizes he needs to "get busy living, or get busy dying...." And chooses living.... He says....rather dramatically, I might add... "I Hope." So do I.
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