Tomorrow is chemo #3 and then I will only have ONE more left! I still feel so thankful that I'm only having four treatments instead of 12 or 20 or more. The time between #2 and #3 has really flown by. Not sure if it's just because I knew a little more what to expect or that the kids were gone for most of it or that I caught this cold or what.
Last week I was SO MAD by Thursday that I had caught this cold, like I wanted to cry I was so mad. I know I will not be feeling great later this week and so had various things I wanted to do last week when I thought I'd be feeling my best, and then I didn't feel good. Thursday I was beat after work and took a nap (so did Bryce, yay!) and mostly did nothing back at home that day. Juan got me soup for dinner from a place we like and it was really good. I rallied for the weekend... sort of at least.
Friday I had already planned to take the day off to spend with the kids because it was Claire's last day of spring break. I still didn't feel great when I woke up and considered doing nothing and actually having a sick day. I had originally planned to go for a drive and have picnic somewhere in the mountains. We ended up going over to Danik for their open gym with the Harelson's in the morning. The kids had a blast jumping on the tramps and running around like crazy.
I still wanted to do something outside and had the idea to go down by the Boise River in Eagle where the kids could throw rocks and play in the water. So we did get to have our picnic and we didn't have to drive very far. It was really nice out... 75 degrees and the kids had so much fun. I think Bryce threw rocks for about 2 hours straight. The water is quite low and Claire and Cole were able to walk across to the other side. We built some little dams to make rivers and pools by our "beach" (my favorite pastime). It felt really good to be outside in the sunshine.
As the weekend progressed, I've been feeling better... just in time to start feeling like crap again for a few days, or maybe sooner. I'm a little worried that maybe I'll feel worse this time because the chemo will exacerbate my cold. I don't think the cold will preclude me from having chemo, as long as my blood cell counts are adequate and I don't have a fever (I still haven't) I should be able to keep on schedule.
On a less whiny note, I am looking forward to a visiting with lots of family this weekend. Patrick, Aileen and Harrison are arriving on Friday. Also my Aunt Peggy, Uncle David and cousins Trevor and Tara will be in town to celebrate Cole and Charlie's birthdays. There will be lots of entertainment for Claire and Bryce this weekend between a birthday party and Easter festivities... and most importantly lots of people to help keep an eye on them.
Monday, March 30, 2015
Thursday, March 26, 2015
Random Bits of Information
The children have returned (last Friday) and we've been having a good week together.
I have a cold and it sucks. I have not had a fever so that is good.
My house cleaner from "Cleaning for a Reason" came yesterday. This guy said how he does it with this service is to clean the kitchen and three other rooms of my choice. I selected the two bathrooms and the living room. He did a good job on the areas he cleaned. Next time I will request he at least vacuum the hallway too because that would have been nice and just seems like it should be part of it. Other than that I can't complain because it's a free service and the house looks great.
I still have some hair but it looks like I have female pattern baldness. Or I've just been released from a concentration camp. It is NOT a good look. My hair has started falling out more rapidly again but there is still lots left. Why won't it just all fall out already???
One of my new hats arrived and it's really cute. I hope the others get her soon because it's nice to have some options.
The other day when I got home from work Juan made a point to come give me a hug and tell me how beautiful and awesome I am. I can't actually remember exactly what he said but it was really nice. I had to add it was nice to know he felt that way given how cool I look with my shaved head that looks like it has a leopard print due to the bald spots.
Bryce likes my haircut. He will periodically ask me to take my hat off so he can see it and tickle my head. He says, "Mommy, you have the haircut?" Yes, do you like mommy's haircut? "Yes, I like it. I tickle the haircut?" Sure... why not.
For some reason I feel like scarves/turbans look more cancery and so I've just been wearing my comfy hats. I'm too lazy to wear a wig on a daily basis it appears. Also I don't really like having hair next to my face and with a wig it doesn't look right to pull it back behind your ears like I would normally do.
At home I wear a hat or sometimes nothing, because I can tell you, it gets old wearing a hat all the time. I think I scared Claire's little friend the other day when she saw my creepy shaved head. I heard her whisper to Claire, "Why doesn't your mom have any hair???!!!" I jumped in and told her I had to get this crazy medicine and it was making my hair fall out... could she believe that? Then she just said, "Oh," like it was no big deal so that was good. Now Claire keeps asking me to show other kids my head. I wish the rest of the hair would just fall out because it would be better than what's going on right now. P.S. I declined to show my head to the others... I need to remind Claire my shaved head is not to be used for entertainment purposes.
My eyes keep watering. The cold I have isn't helping, but it's also one of the side effects Taxotere can cause. It's not awesome and also not a good look.
Last night Manibhu and I had dinner at Kona Grill (she was in town for work). At the table next to us there was a woman with a shaved head and three other women. Her shaved head did not have creepy bald spots like mine (self-inflicted and otherwise; also I could only see the back). We were pretty sure she going through cancer treatment because there was some hand holding and several tears at their table. Manibhu had a better view and than me and said, maybe not, because it was other women, not the one with the shaved head, that were crying. I disagreed and said sometimes I think other people are more apt to tear up than the person going through it... not always, but sometimes.
This is a quote from a book I recently read (Lots of Candles, Plenty of Cake by Ana Quindlen). The context is she was talking about how bad things happen to other people (losing a job in the midst of a great career, the death of a child, a devastating illness, etc.) and we often think to ourselves we could never get through something like that ourselves.
It is also true now that I am in this situation, it just feels like "every day" to me. Every day I have/had cancer now for the rest of my life. And right now, going to lots of appointments and having tests and treatments is kind of routine. It sucks, but it doesn't make me feel strong... it just feels like what I have to do to get through this. What is the alternative? Not go? Cry when I go? I guess those are options, but they are not viable ones for me. I am flattered that people think I am strong, and I am glad that I must be handling my predicament with grace. What I also think is that nearly every person who has told me I am so strong, is just as strong as I am (and I hope they never have to prove it).
Maybe I am "stronger" than I used to be... or perhaps just less vain. One summer while I was in high school I randomly developed Bell's Palsey. I woke up one morning and while putting in my contacts realized I couldn't squeeze my eye shut tight. Then I noticed when I smiled, only half of my face smiled! My mom took me to the medical clinic where Pete diagnosed the problem. He said this could happen when a nerve that passes through a narrow space between some bones near your ear gets inflamed, and the result is the muscles in your face can't get the messages from your brain resulting in paralysis... of half your face. He said it is usually temporary and could last anywhere from days to weeks to months or sometimes it could be permanent. As in forever!? I was totally freaked out, and I confined myself to my room. I refused to see any of my friends. I didn't even want to talk to them on the phone. People brought me things/gifts to cheer me up and I wouldn't even come out to say hello or thank you. How rude! I remember sneaking up to the kitchen to get food and then back to my room as fast as possible. My room was in the basement with a teeny-tiny window and I pretty much stayed there for about two weeks I think. My mom probably should have decked me. Luckily it did go away and I was able to return to my sweet self again.
It's supposed to be 73 degrees here tomorrow! And I am taking the day off to do something fun with the kids. We will be outside for sure.
I have a cold and it sucks. I have not had a fever so that is good.
My house cleaner from "Cleaning for a Reason" came yesterday. This guy said how he does it with this service is to clean the kitchen and three other rooms of my choice. I selected the two bathrooms and the living room. He did a good job on the areas he cleaned. Next time I will request he at least vacuum the hallway too because that would have been nice and just seems like it should be part of it. Other than that I can't complain because it's a free service and the house looks great.
I still have some hair but it looks like I have female pattern baldness. Or I've just been released from a concentration camp. It is NOT a good look. My hair has started falling out more rapidly again but there is still lots left. Why won't it just all fall out already???
One of my new hats arrived and it's really cute. I hope the others get her soon because it's nice to have some options.
The other day when I got home from work Juan made a point to come give me a hug and tell me how beautiful and awesome I am. I can't actually remember exactly what he said but it was really nice. I had to add it was nice to know he felt that way given how cool I look with my shaved head that looks like it has a leopard print due to the bald spots.
Bryce likes my haircut. He will periodically ask me to take my hat off so he can see it and tickle my head. He says, "Mommy, you have the haircut?" Yes, do you like mommy's haircut? "Yes, I like it. I tickle the haircut?" Sure... why not.
For some reason I feel like scarves/turbans look more cancery and so I've just been wearing my comfy hats. I'm too lazy to wear a wig on a daily basis it appears. Also I don't really like having hair next to my face and with a wig it doesn't look right to pull it back behind your ears like I would normally do.
At home I wear a hat or sometimes nothing, because I can tell you, it gets old wearing a hat all the time. I think I scared Claire's little friend the other day when she saw my creepy shaved head. I heard her whisper to Claire, "Why doesn't your mom have any hair???!!!" I jumped in and told her I had to get this crazy medicine and it was making my hair fall out... could she believe that? Then she just said, "Oh," like it was no big deal so that was good. Now Claire keeps asking me to show other kids my head. I wish the rest of the hair would just fall out because it would be better than what's going on right now. P.S. I declined to show my head to the others... I need to remind Claire my shaved head is not to be used for entertainment purposes.
My eyes keep watering. The cold I have isn't helping, but it's also one of the side effects Taxotere can cause. It's not awesome and also not a good look.
Last night Manibhu and I had dinner at Kona Grill (she was in town for work). At the table next to us there was a woman with a shaved head and three other women. Her shaved head did not have creepy bald spots like mine (self-inflicted and otherwise; also I could only see the back). We were pretty sure she going through cancer treatment because there was some hand holding and several tears at their table. Manibhu had a better view and than me and said, maybe not, because it was other women, not the one with the shaved head, that were crying. I disagreed and said sometimes I think other people are more apt to tear up than the person going through it... not always, but sometimes.
This is a quote from a book I recently read (Lots of Candles, Plenty of Cake by Ana Quindlen). The context is she was talking about how bad things happen to other people (losing a job in the midst of a great career, the death of a child, a devastating illness, etc.) and we often think to ourselves we could never get through something like that ourselves.
"And then sometimes we become one of those people and are amazed, not by our own strength but by that indomitable ability to slog through adversity, which looks like strength from the outside and just feels like every day when it's happening to you."When I read that, I could only think how true that statement is... or at least it has been for me. I can't even attempt to tell you how many times I have been complimented on my strength or told what a strong person I am. It has been a LOT of times! I don't really feel strong, nor do I feel weak. I just feel mostly like my normal self. There are moments where I feel upset, sad, angry, frustrated and there have been a few moments where I completely broke down and definitely did not feel strong in the least. But I have felt that way in life before. It never lasts very long. And so with this, like anything, I get the anger and grieving out of my system and then move forward.
It is also true now that I am in this situation, it just feels like "every day" to me. Every day I have/had cancer now for the rest of my life. And right now, going to lots of appointments and having tests and treatments is kind of routine. It sucks, but it doesn't make me feel strong... it just feels like what I have to do to get through this. What is the alternative? Not go? Cry when I go? I guess those are options, but they are not viable ones for me. I am flattered that people think I am strong, and I am glad that I must be handling my predicament with grace. What I also think is that nearly every person who has told me I am so strong, is just as strong as I am (and I hope they never have to prove it).
Maybe I am "stronger" than I used to be... or perhaps just less vain. One summer while I was in high school I randomly developed Bell's Palsey. I woke up one morning and while putting in my contacts realized I couldn't squeeze my eye shut tight. Then I noticed when I smiled, only half of my face smiled! My mom took me to the medical clinic where Pete diagnosed the problem. He said this could happen when a nerve that passes through a narrow space between some bones near your ear gets inflamed, and the result is the muscles in your face can't get the messages from your brain resulting in paralysis... of half your face. He said it is usually temporary and could last anywhere from days to weeks to months or sometimes it could be permanent. As in forever!? I was totally freaked out, and I confined myself to my room. I refused to see any of my friends. I didn't even want to talk to them on the phone. People brought me things/gifts to cheer me up and I wouldn't even come out to say hello or thank you. How rude! I remember sneaking up to the kitchen to get food and then back to my room as fast as possible. My room was in the basement with a teeny-tiny window and I pretty much stayed there for about two weeks I think. My mom probably should have decked me. Luckily it did go away and I was able to return to my sweet self again.
It's supposed to be 73 degrees here tomorrow! And I am taking the day off to do something fun with the kids. We will be outside for sure.
Thursday, March 19, 2015
When the Kids Are Away...
Tomorrow I will finally see my children again! I can't believe they have been gone for almost 2 weeks. I can't believe how ok I was with that! I think it is because I felt they were old enough and of course knowing they are with my parents and other family members is what really made it ok.
I never imagined I would raise my children so far away from the core of my family (and yes, I'm fully aware that it's not really that far in the grand scheme of things). I always figured we would live close enough to have dinner together on occasion and things like that, and my kids could grow up spending lots of time with their grandparents. Many years ago when Juan and I were just figuring out what our future together might be, I remember telling him that I would want to live closer to my family when I was raising my own children. But as we all know, things in life almost never happen just the way we envision them (I certainly never envisioned cancer in my future), and as of yet, things have never fallen into place for that to be possible. Luckily I like Boise quite a lot and all the good things here offset the long drive between us.
The point of me writing about that is I was very happy for my kids to get to spend time with my parents and also the rest of our family in Tekoa. When we visit, it seems like there is never enough time to really spend as much quality time with anyone as I would like. When we have been able to go for a longer visit, we usually try to use the extra time to see friends that we never get to see. There are always so many things to do and people to see! So I was excited that this trip, the kids would be immersed in family. And hopefully behave themselves, too!
Before this past week I don't think I had ever been away from the kids, or them from me, for more than 2 nights at most. I wasn't exactly sure how it would go (for all of us) but I thought it would be ok. Juan and I realized last year (before the stupid cancer) that we might be ready to commission someone else to watch our kids for a several days so we could go on a trip or something like that. Always in the past I would never have even considered doing that! So this has been a good trial run (although probably longer than we would have done even for a trip!).
According to the reports from Tekoa, Claire has been a little homesick and missing us. She's ready to come home. Bryce, on the other hand, may have already forgotten all about us! I'm told he's probably shot over a thousand baskets so his mind is focused on other things I suppose. I have definitely missed them both, but have also enjoyed being able to really relax and take care of myself. Here are some reflections on this past week and a half...
They are my reason. My reason to do everything I can so cancer never returns. My reason to strive to create a happy life in general. I remember before we had kids (but I thought I was ready for one) and I was kind of feeling that way... what is the point of all this? It felt like the essence of my life boiled down to wake up... work... eat... sleep... repeat, repeat, repeat. Not to say I didn't have fun with Juan, spend time with friends, and have various hobbies. But really, what was the point? I even liked my job a lot back then and still felt that way. I think for me I always knew I wanted to be a mom and to be a good wife and raise a family. There was a short time when I wasn't sure it was going to work out how I hoped... and did come to realize/accept I could make a fulfilling life if kids weren't in the cards if I had to. I'm glad I didn't have to. And now I do have my own little family and so without a doubt they are my reason for all of it.
I have tried not to feel guilty about enjoying this little break from being mommy every day... because I have enjoyed it very much! And at the same time felt like I shouldn't enjoy it quite so much. Although, when I was feeling the chemo-yuckiness last week I didn't feel guilty at all. I just felt thankful that I could rest without neglecting anyone. Now that I've been feeling pretty normal this week it's like I'm shirking my motherly duties.
And now Juan is gone too and I have to admit it is slightly heavenly to have my clean house all to myself and to be totally selfish with my time. To have the freedom to do whatever I want or don't want to do. To run an errand or go shopping after work and take as long as I want. It's nice. If I didn't know all of them would be back soon it would be depressing, but that is not the case.
I hope my parents have enjoyed getting to know Claire and Bryce on a new level, too. I hope that the kids have been good and it appears we are doing something right in how we are raising them. I don't think we are raising little jerks, but sometimes validation of that is good. I also hope my parents and my kids might want to do this again in the future (but not because of an illness!). I always heard about kids going to "spend a week with Grandma and Grandpa," but it was never anything I experienced because Grandma and Grandpa lived just down the road.
All in all, I think this has been a good experience for all of us and hopefully my parents feel the same way. I can hardly wait to squeeze those little bodies sometime tomorrow afternoon! I'm getting back in mom mode... thinking about what fun things we might do during spring break next week... even feeling in the mood to plan a menu. I also have a list of all the things I want to do before they all come back! The time for that is running out so I better get to it!
I never imagined I would raise my children so far away from the core of my family (and yes, I'm fully aware that it's not really that far in the grand scheme of things). I always figured we would live close enough to have dinner together on occasion and things like that, and my kids could grow up spending lots of time with their grandparents. Many years ago when Juan and I were just figuring out what our future together might be, I remember telling him that I would want to live closer to my family when I was raising my own children. But as we all know, things in life almost never happen just the way we envision them (I certainly never envisioned cancer in my future), and as of yet, things have never fallen into place for that to be possible. Luckily I like Boise quite a lot and all the good things here offset the long drive between us.
The point of me writing about that is I was very happy for my kids to get to spend time with my parents and also the rest of our family in Tekoa. When we visit, it seems like there is never enough time to really spend as much quality time with anyone as I would like. When we have been able to go for a longer visit, we usually try to use the extra time to see friends that we never get to see. There are always so many things to do and people to see! So I was excited that this trip, the kids would be immersed in family. And hopefully behave themselves, too!
Before this past week I don't think I had ever been away from the kids, or them from me, for more than 2 nights at most. I wasn't exactly sure how it would go (for all of us) but I thought it would be ok. Juan and I realized last year (before the stupid cancer) that we might be ready to commission someone else to watch our kids for a several days so we could go on a trip or something like that. Always in the past I would never have even considered doing that! So this has been a good trial run (although probably longer than we would have done even for a trip!).
According to the reports from Tekoa, Claire has been a little homesick and missing us. She's ready to come home. Bryce, on the other hand, may have already forgotten all about us! I'm told he's probably shot over a thousand baskets so his mind is focused on other things I suppose. I have definitely missed them both, but have also enjoyed being able to really relax and take care of myself. Here are some reflections on this past week and a half...
- I can do what I want... when I want... and not feel like I'm neglecting anyone. I don't really buy into the "mommy guilt" thing, but this week made me realize I often do feel bad about doing "me" things. And a lot of the time "me" things include vacuuming or paying the bills or organizing Claire's school work that I want to save. They aren't even fun things, just things that need to be done, yet they take time away from doing things with my kids. The real problem is, it usually means that more often than I'd like to admit, my kids are watching TV or playing a game on the phone... because those are the things they will do for the amount of time required to get said chores done without interrupting me. At least with chores I feel like they are necessary, so I can justify it in that way. With things like reading a book, sewing a project, going for a walk, or even writing on this blog, I feel like they are more "selfish" pursuits and so they usually are on the back burner.
- I don't have to think about feeding someone else every day. Meals can cause stress in my house. I get so tired of trying to decide what to make. I don't want to make the same thing over and over. I like to try new recipes, but not too many because new doesn't always equal good. My kids are picky. I hate to admit it but they totally are. They actually do want to eat the same thing over and over. I struggle with trying to have a varied menu but always to have at least something in the meal they will eat. Add to that trying to make it at least somewhat healthy. This has kind of been bad though because while the kids have been gone I have put zero thought into meals and we have eaten out way more than normal. I don't even think I've had to buy any groceries! Reality is setting in... I need to plan a menu and go shopping! Luckily I still have a few things in the freezer {thank you!!!}.
- My house is clean and has stayed clean. I haven't had to put away the magna-tiles, marble track, etc. for the fourth time. Every. Single. Day. No one's shoes or coat is laying on the floor... again. How does one train the children to just automatically pick up after themselves? For that matter, how does one train a husband to do that? Any great ideas or advice.. please share!
- It's so quiet. Usually any activity or period of rest is punctuated by multiple and frequent interruptions. "I'm hungry. I have an idea, let's [insert crazy idea here]. When will you be done? What can I do? Can I have a snack? How much longer will you take? Bryce isn't sharing. I need a snack. Can we do a craft? Let's build a marble track. I'm bored. Help! Carlo is attacking me!!! Can I watch a show? Where is my [insert any possible item here]? Can I play with [friend]? I need to eat dinner. Will you make a paper airplane? Are you done yet? Where is the tape? I'm starving. Bryce just dumped out all the markers. I want to go outside. How much longer until dinner?" It goes on and on and on and on and on.
They are my reason. My reason to do everything I can so cancer never returns. My reason to strive to create a happy life in general. I remember before we had kids (but I thought I was ready for one) and I was kind of feeling that way... what is the point of all this? It felt like the essence of my life boiled down to wake up... work... eat... sleep... repeat, repeat, repeat. Not to say I didn't have fun with Juan, spend time with friends, and have various hobbies. But really, what was the point? I even liked my job a lot back then and still felt that way. I think for me I always knew I wanted to be a mom and to be a good wife and raise a family. There was a short time when I wasn't sure it was going to work out how I hoped... and did come to realize/accept I could make a fulfilling life if kids weren't in the cards if I had to. I'm glad I didn't have to. And now I do have my own little family and so without a doubt they are my reason for all of it.
I have tried not to feel guilty about enjoying this little break from being mommy every day... because I have enjoyed it very much! And at the same time felt like I shouldn't enjoy it quite so much. Although, when I was feeling the chemo-yuckiness last week I didn't feel guilty at all. I just felt thankful that I could rest without neglecting anyone. Now that I've been feeling pretty normal this week it's like I'm shirking my motherly duties.
And now Juan is gone too and I have to admit it is slightly heavenly to have my clean house all to myself and to be totally selfish with my time. To have the freedom to do whatever I want or don't want to do. To run an errand or go shopping after work and take as long as I want. It's nice. If I didn't know all of them would be back soon it would be depressing, but that is not the case.
I hope my parents have enjoyed getting to know Claire and Bryce on a new level, too. I hope that the kids have been good and it appears we are doing something right in how we are raising them. I don't think we are raising little jerks, but sometimes validation of that is good. I also hope my parents and my kids might want to do this again in the future (but not because of an illness!). I always heard about kids going to "spend a week with Grandma and Grandpa," but it was never anything I experienced because Grandma and Grandpa lived just down the road.
All in all, I think this has been a good experience for all of us and hopefully my parents feel the same way. I can hardly wait to squeeze those little bodies sometime tomorrow afternoon! I'm getting back in mom mode... thinking about what fun things we might do during spring break next week... even feeling in the mood to plan a menu. I also have a list of all the things I want to do before they all come back! The time for that is running out so I better get to it!
Sunday, March 15, 2015
Post Chemo #2
Chemo #2 has gone pretty similar to #1 and that is a good thing. I worked on Wednesday and Thursday and felt basically normal, although I did rest more than normal in the afternoons. Thursday night we went out to dinner and I felt good.
Back at home I was tired and started to feel the blood pumping through my veins again. My whole body feels heavy. Did you know your finger tips can feel heavy? Like you don't even want to wiggle them. I also was a little achy but not terrible. I get aches in my ears and jaw and I just kind of feel tender everywhere. Not so tender it's hurts to be touched, but I notice it more or something like that. That night I had weird dreams that I don't really remember except I know there was one where I was trying to wake myself and/or Juan up... I know I was struggling to scream and yell but I couldn't make a sound and I couldn't move. Other than that I slept ok. The cat may have jumped on me once which I did not appreciate.
I had already planned to take Friday off of work and spent the morning sleeping and reading in my bed. Finally I got up and took a shower and ate some food and felt more alive again. I may have initiated an attempt to shave my head right down to the scalp, a task which after a few extremely awkward and very uncomfortable strokes I decided to abandon. I may or may not have a sweet bald spot (or four) on my head. Sorry, no pictures for you. That afternoon Beth and I went to see a movie. We went to "Still Alice" - we knew it was going to be sad. We decided it would be ok because we could feel sad about someone else's predicament (it's about a 50 year old woman who has early onset alzheimer's and yes it was sad but also very good). There was one part where the main character tells her husband she just wishes she had cancer. Beth and I looked at each other, and I whispered that I had just been thinking I'd definitely rather have my own/cancer problem that have what this woman had. It's all relative and things could pretty much always be worse.
Saturday, I felt pretty good again. I took it easy around the house all day and was up for stopping by the dinner club with our friends that night. We didn't even have to worry about finding a babysitter, so that was a plus. It was fun to visit with friends and they had some pretty entertaining games lined up for the evening. Plus they are all super nice to me and tell me how cute I look in my hat and/or bald head. I can also get out of any activities that I don't want to do because... you know... the cancer.
Today, I want to take a walk because I didn't do very good at that the last couple days. I just had a nice breakfast with lots of protein and I'm feeling quite good. I am so thankful that I haven't had severe side effects like so many people must have. It makes me curious how the same chemo drugs can effect people so differently. What is it in us that makes our bodies behave differently to the same chemicals? Obviously nausea is a common side effect, we've all heard it/seen it in media, and my doctors, nurses, and pharmacist all talked to me about it quite a lot with respect to my specific drugs, yet I have been lucky not to experience it. If it wasn't at least moderately expected, I wouldn't have two different prescriptions (Zofran and Compazine) on hand to combat it. There was even a third prescription (Ativan) which I turned down. The way it's worked out, I'm glad my doctors didn't instruct me to take the anti-nausea medication prior to any symptoms the way some do. I was told to start taking the Zofran only at the first sign of nausea (but don't wait if you feel yucky at all!!!)... if that wasn't cutting it, then take the other one. So far, I haven't had to take any of it. If I had been taking either of those without symptoms, then I would have been dealing with their side effects (constipation, anyone?) for no reason, but I wouldn't know any different. I don't really like taking pills so I didn't want to take anything I didn't need to and it's nice my oncologist is on the same page with me.
Of course, they do give me a little bag of anti-nausea pre-medication (Kytril) the day of chemo and I take a steroid (Dexamethasone) the day before, day of, and day after chemo, which has anti-nausea properties in addition to lessening the chance of a reaction, which is the main reason I have to take it. Anyway, I guess it's just like the whole cancer thing in general. Stop questioning it and wondering why, what if, etc and just accept it. And in the case of side effects, that is very easy because it's such a good thing!
Back at home I was tired and started to feel the blood pumping through my veins again. My whole body feels heavy. Did you know your finger tips can feel heavy? Like you don't even want to wiggle them. I also was a little achy but not terrible. I get aches in my ears and jaw and I just kind of feel tender everywhere. Not so tender it's hurts to be touched, but I notice it more or something like that. That night I had weird dreams that I don't really remember except I know there was one where I was trying to wake myself and/or Juan up... I know I was struggling to scream and yell but I couldn't make a sound and I couldn't move. Other than that I slept ok. The cat may have jumped on me once which I did not appreciate.
I had already planned to take Friday off of work and spent the morning sleeping and reading in my bed. Finally I got up and took a shower and ate some food and felt more alive again. I may have initiated an attempt to shave my head right down to the scalp, a task which after a few extremely awkward and very uncomfortable strokes I decided to abandon. I may or may not have a sweet bald spot (or four) on my head. Sorry, no pictures for you. That afternoon Beth and I went to see a movie. We went to "Still Alice" - we knew it was going to be sad. We decided it would be ok because we could feel sad about someone else's predicament (it's about a 50 year old woman who has early onset alzheimer's and yes it was sad but also very good). There was one part where the main character tells her husband she just wishes she had cancer. Beth and I looked at each other, and I whispered that I had just been thinking I'd definitely rather have my own/cancer problem that have what this woman had. It's all relative and things could pretty much always be worse.
Saturday, I felt pretty good again. I took it easy around the house all day and was up for stopping by the dinner club with our friends that night. We didn't even have to worry about finding a babysitter, so that was a plus. It was fun to visit with friends and they had some pretty entertaining games lined up for the evening. Plus they are all super nice to me and tell me how cute I look in my hat and/or bald head. I can also get out of any activities that I don't want to do because... you know... the cancer.
Today, I want to take a walk because I didn't do very good at that the last couple days. I just had a nice breakfast with lots of protein and I'm feeling quite good. I am so thankful that I haven't had severe side effects like so many people must have. It makes me curious how the same chemo drugs can effect people so differently. What is it in us that makes our bodies behave differently to the same chemicals? Obviously nausea is a common side effect, we've all heard it/seen it in media, and my doctors, nurses, and pharmacist all talked to me about it quite a lot with respect to my specific drugs, yet I have been lucky not to experience it. If it wasn't at least moderately expected, I wouldn't have two different prescriptions (Zofran and Compazine) on hand to combat it. There was even a third prescription (Ativan) which I turned down. The way it's worked out, I'm glad my doctors didn't instruct me to take the anti-nausea medication prior to any symptoms the way some do. I was told to start taking the Zofran only at the first sign of nausea (but don't wait if you feel yucky at all!!!)... if that wasn't cutting it, then take the other one. So far, I haven't had to take any of it. If I had been taking either of those without symptoms, then I would have been dealing with their side effects (constipation, anyone?) for no reason, but I wouldn't know any different. I don't really like taking pills so I didn't want to take anything I didn't need to and it's nice my oncologist is on the same page with me.
Of course, they do give me a little bag of anti-nausea pre-medication (Kytril) the day of chemo and I take a steroid (Dexamethasone) the day before, day of, and day after chemo, which has anti-nausea properties in addition to lessening the chance of a reaction, which is the main reason I have to take it. Anyway, I guess it's just like the whole cancer thing in general. Stop questioning it and wondering why, what if, etc and just accept it. And in the case of side effects, that is very easy because it's such a good thing!
Saturday, March 14, 2015
Tell Me Something I Don't Know
It's been interesting as I've gone through this whole cancer crap how some people love to tell me things that they think are a big secret about cancer and treatment. It's not so much that they are telling me, but the way some folks have of doing it.
I also get lots of advice... some good, some that maybe comes off a little more condescending.
You shouldn't eat any sugar ever again. It feeds the cancer.
You need to exercise every day and start running so cancer won't come back.
You should only eat organic food.
Someone told me in rather vague terms they could see some things I should be doing just by looking at me. (That one freaked me out a bit... I must totally look like cancer girl?! And this was before chemo and all that!) Perhaps some of all of these things are true, and to a certain extent I do believe they are good advice. I probably should eat less sugar. So should you. Everyone should get exercise regularly. Organic, I believe has many merits. However, I still have to live my life and enjoy my life, and if I need a delicious chocolate chip cookie or a milkshake I want to have it and enjoy it... and not worry it's going to kill me.
You know, you are going to lose your eyebrows and lashes.
Did you know your all nose hair will fall out?
Did you know you're going to lose ALL your hair... not just on your head... like your legs and you know, down there? (Not surprisingly, hair loss is probably the most common, or maybe just most memorable, topic.)
Yes, I have heard all those things and more. I know them because I have friends who have experienced those things personally and are so willing to answer every question I ever asked without hesitation or embarrassment. Also some of my friends didn't lose all their eyebrows, etc. so that might not happen to me... don't say it like it's a fact. I've heard about these things because I look at the internet more than necessary. I peruse discussion boards that are specific to the chemo drugs I am taking and the ladies on those boards have experienced every possible side effect ever to exist (thankfully I personally haven't had most of them, but it has been helpful to me to know what other things could happen). I also have a great team doctors and chemo nurses, some who have been through this themselves, and they answer all my questions and tell me things to expect and watch out for, too. So I feel like I'm pretty in the know. I also feel like I have a good handle on what is good information/advice and what is not - especially when it comes to the internet. It can be a dangerous thing! I'm really so thankful for all the real-live humans I have in my circle to help educate me. I'm also thankful for all the people who just check in to say hello and let me know they are thinking of me or comment on this blog without offering any new insight or advice. That really means a lot to me and helps keep my spirits up!
So it's kind of entertaining when someone calls to tell me these little tidbits of information they have learned, or possibly even had a person they know experience. I have discovered it's all in the delivery of the message. I have had various people tell me the same things and sometimes it comes across slightly grating, but in most cases positive, helpful, and encouraging. I do appreciate all pieces of information from almost all sources, but sometimes it's just comical and sort of comes across in a way like they are trying to scare me. I don't think you can scare me at this point unless you tell me I have more cancer.
There are actually some things I think I'm more concerned about than all these hair-related issues. Like the fact I'm probably going to have chemo-induced menopause, which may, or may not be permanent. Something I thought was a quite a long way off for me. We are all done having kids so I'm not freaked out about that part, but I kind of liked to think I was still "young" and fertile (even if I only have one fallopian tube).
Along the same topic, I'm not super excited about when I have to start taking Tamoxifen, the drug that blocks estrogen which will help prevent recurrence of my highly estrogen-receptor positive cancer cells (cells that are not in me anymore and are not allowed to come back!). I am so thankful this drug exists and that it can be an effective treatment for me. Hopefully I won't have many side effects, but I'm sure there will be some and it will just be an annoying reminder about all this. I'll take it every day for at least 5 years and probably more like 10 unless I have problems with it.
From what I've heard and read the most common side effects of the drug are similar to menopause... hot flashes, night sweats, decreased libido, dryness, weight gain, etc. It could be much worse and thankfully none of those things are life-threatening, but they don't sound like much fun, nor are they things I wanted to experience in my 30's and 40's. Oh, and I might get to have all of those menopausal issues while at the same time still having my period! I know I just complained about not having my period, but it really seems unfair to have menopause and a period all at the same time. Especially because I've heard Tamoxifen also can make your period really irregular and heavier then normal... things I've never had to deal with before. I will research this a little more, but if that is what I have to look forward to, you can sign me up for a uterine ablation right now.
I also get lots of advice... some good, some that maybe comes off a little more condescending.
You shouldn't eat any sugar ever again. It feeds the cancer.
You need to exercise every day and start running so cancer won't come back.
You should only eat organic food.
Someone told me in rather vague terms they could see some things I should be doing just by looking at me. (That one freaked me out a bit... I must totally look like cancer girl?! And this was before chemo and all that!) Perhaps some of all of these things are true, and to a certain extent I do believe they are good advice. I probably should eat less sugar. So should you. Everyone should get exercise regularly. Organic, I believe has many merits. However, I still have to live my life and enjoy my life, and if I need a delicious chocolate chip cookie or a milkshake I want to have it and enjoy it... and not worry it's going to kill me.
You know, you are going to lose your eyebrows and lashes.
Did you know your all nose hair will fall out?
Did you know you're going to lose ALL your hair... not just on your head... like your legs and you know, down there? (Not surprisingly, hair loss is probably the most common, or maybe just most memorable, topic.)
Yes, I have heard all those things and more. I know them because I have friends who have experienced those things personally and are so willing to answer every question I ever asked without hesitation or embarrassment. Also some of my friends didn't lose all their eyebrows, etc. so that might not happen to me... don't say it like it's a fact. I've heard about these things because I look at the internet more than necessary. I peruse discussion boards that are specific to the chemo drugs I am taking and the ladies on those boards have experienced every possible side effect ever to exist (thankfully I personally haven't had most of them, but it has been helpful to me to know what other things could happen). I also have a great team doctors and chemo nurses, some who have been through this themselves, and they answer all my questions and tell me things to expect and watch out for, too. So I feel like I'm pretty in the know. I also feel like I have a good handle on what is good information/advice and what is not - especially when it comes to the internet. It can be a dangerous thing! I'm really so thankful for all the real-live humans I have in my circle to help educate me. I'm also thankful for all the people who just check in to say hello and let me know they are thinking of me or comment on this blog without offering any new insight or advice. That really means a lot to me and helps keep my spirits up!
So it's kind of entertaining when someone calls to tell me these little tidbits of information they have learned, or possibly even had a person they know experience. I have discovered it's all in the delivery of the message. I have had various people tell me the same things and sometimes it comes across slightly grating, but in most cases positive, helpful, and encouraging. I do appreciate all pieces of information from almost all sources, but sometimes it's just comical and sort of comes across in a way like they are trying to scare me. I don't think you can scare me at this point unless you tell me I have more cancer.
There are actually some things I think I'm more concerned about than all these hair-related issues. Like the fact I'm probably going to have chemo-induced menopause, which may, or may not be permanent. Something I thought was a quite a long way off for me. We are all done having kids so I'm not freaked out about that part, but I kind of liked to think I was still "young" and fertile (even if I only have one fallopian tube).
Along the same topic, I'm not super excited about when I have to start taking Tamoxifen, the drug that blocks estrogen which will help prevent recurrence of my highly estrogen-receptor positive cancer cells (cells that are not in me anymore and are not allowed to come back!). I am so thankful this drug exists and that it can be an effective treatment for me. Hopefully I won't have many side effects, but I'm sure there will be some and it will just be an annoying reminder about all this. I'll take it every day for at least 5 years and probably more like 10 unless I have problems with it.
From what I've heard and read the most common side effects of the drug are similar to menopause... hot flashes, night sweats, decreased libido, dryness, weight gain, etc. It could be much worse and thankfully none of those things are life-threatening, but they don't sound like much fun, nor are they things I wanted to experience in my 30's and 40's. Oh, and I might get to have all of those menopausal issues while at the same time still having my period! I know I just complained about not having my period, but it really seems unfair to have menopause and a period all at the same time. Especially because I've heard Tamoxifen also can make your period really irregular and heavier then normal... things I've never had to deal with before. I will research this a little more, but if that is what I have to look forward to, you can sign me up for a uterine ablation right now.
Wednesday, March 11, 2015
Half Way Done with Chemo on My Half Birthday
I am now officially 37.5 years old. My half-birthday is March 10. I always know this because my cousin Trevor's birthday is March 10. So we are exactly 6 months apart and get to celebrate our half-birthdays on each others actual birthdays. Happy Birthday Trevor!!
Beth had brand new hair clippers so after dinner I asked if she would shave my head again, this time with no guard. I figured her clippers would be sharper than ours and more comfortable. We sat on the patio and she got a turn shaving my head. Now there is just this rough stubble and I do need to shave it all the way down because it catches on my hats. Also, it appears someone may have dropped me on my head as a baby because I have dent or flat spot or something going on on one side. Ha ha! The Evan's came over so we got to visit with them, too. Then I started to feel kind of tired so we went home. Here's a picture of my latest hair cut. A hair cut I never imagined I'd have!
Our house is very quiet with the kids being in Tekoa. We miss them, but I'll admit it's kind of nice, too. Thank you mom and dad for taking good care of them. I know you will all have a lot of fun together! I worked on picking things up and putting them away the last couple days, because today a house cleaner is coming to clean my house, courtesy of my sweet sisters-in-law, Manibhu and Chetan. What was really nice was after putting all the toys, blankets, papers, crayons, etc. away, they stayed put away! Someone didn't dump markers all over the floor right after I put them in their cubby! I kind of forgot what that was like. And when I got home from work today my house was all clean! Clean floors, clean counters and sinks and showers and toilets, dusted and vacuumed. She even cleaned on top of the fridge and wiped down the washer and dryer. I was hesitant to accept this gift as it seemed overly generous and I feel like I am capable of cleaning plus I have a capable husband, but it really is a most wonderful gift. Thank you girls so much!!! The only problem, as I mentioned, is I'm fairly confident when my treatments are finished, I will still not want to clean my house all that bad and so I might just have to hire Celicia as a regular!
I have another person coming on March 25 to clean as well. Prior to Manibhu and Chetan's gift, I had signed up to participate in a program called "Cleaning for a Reason" - Krista told me about this non-profit organization that works with maid services throughout the nation to provide free housecleaning once a month for four months to women undergoing cancer treatment. I signed up and got matched with a local business called "Meticulous Man Services." Yes, it's a man, which I don't think is probably all that common in this line of work. Anyway, the way it will work out I'll have someone there to clean every other week for the next few months (it was determined once a month might not be enough) and it will be so nice to not have to worry about that. My house is going to be cleaner than it has been for the last 8 years!
Monday, March 9, 2015
What'd You Do Last Weekend?
Oh, you know, just the regular stuff. Claire had a basketball game on Saturday morning. Juan grabbed some cinnamon roll bread from Great Harvest. We shaved my head. Then we made a Costco run and ran a few other errands. That night my parents took us out all for a lovely dinner at Juniper to celebrate Juan's (belated) birthday.
It was all pretty normal other than the fact I shaved my head! Technically Juan, with a little help from Claire, did the shaving. By Friday night, it was really falling out a lot and kind of driving me nuts. I would have shaved it that night, but I wanted my parents to see my cute short cut in person (they were driving down that night) and also not freak them out. It actually didn't look that cute when they saw it though because I couldn't bear to wash or style it and have hair all over my hands. I didn't want to do it right before Claire's game either because she already fights distraction during her games, and I didn't think that would help. I wore a beanie to the game to limit the fall-out onto my shoulders and also because it was not looking awesome with no washing. As soon as we got back home we got the clippers out.
Thank you Juan (and Claire) for the best head shave ever. Thank you to Bryce for not laughing and to my parents for documenting the occasion and saying nice things. None of us even cried (at least not in front of each other). I haven't cried yet. I feel like I should, but it just hasn't come over me yet... I'm sure it will before long and I can bawl in the shower and possibly even have to sit on the floor under the water because it is so debilitating that I can't even stand up.
This is how I work... I start to cry about something a little, maybe it's that I have no hair or even banging my elbow really hard on something, but then it turns into I have cry about everything crappy that has happened to me recently, and then I cry because my kids aren't babies anymore and they never will be again and sometimes I feel like I can barely even remember when they were babies, and then I cry because I miss my family in Tekoa and I miss the rolling hills of the Palouse, and the lake, and then I'll have to cry because I still miss my Grandpa sometimes, too, and then I have to cry more because eventually everyone you love including yourself will die because that is the one certain thing in life and by the time I get to that point I've pretty much cried about everything that makes me sad in the universe, so I stop crying and move on to folding clothes or something random like that. (P.S. I am well too aware that was a terrible run-on sentence but it's the feeling I'm trying to convey.)
I took a shower right after my "hair cut" because of course there was hair everywhere. Once I got all the loose hair off I tired to really rub my scalp to get more to fall out. Oh yeah, totally falling out and my hands were covered every time. It's rather amazing that given the amount of hair that has fallen out of my head there is still a lot left. It is starting to look thin in places I can tell now, but if it was still longer I don't think you could tell. But I would be able to tell, or at least would be dealing with all the fall-out and that was not good so I'm glad I shaved it. It will be interesting to see how long it takes to be actually bald. I think that might be better than what's going on right now.
After my shower, Juan and I did our Costco run. I decided to just wear a hat. It's going to take some getting used to but it wasn't that bad. I felt mostly normal. Especially with sunglasses and a jacket, I just kind of felt like I was wearing a hat (because I was). A normal person - no, that's the wrong word, I am my normal self, I just don't have much hair right now - a non-cancer/chemo person would wear a hat outside. I don't think I would have felt any more "normal" wearing a wig. When we went out to dinner that night I wore my pink hat which I think is pretty cute and mostly comfy. The server said she'd need to see my ID which still happens to me occasionally.... obviously not because there is any remote possibility anyone thinks I'm under age 21, but just a protocol thing. This server was funny, she looked at my ID and was like, "Wow! I never would have guessed that! You have such a baby face." I just laughed and then I said, "Maybe having no hair is going to make me look younger!" Either she was just being really nice, or I wonder how old she guessed I might be? Do you think sometimes servers ask for ID just because they are curious about your age? They have to know you are over 21... but how far over? She seemed pretty sincere in her surprise over my age... maybe she thought I was 30... 32? I'd take that at this point. That makes me feel old to think it's flattering someone might think I was only 32.
We had a fun day playing outside on Sunday (perfect because I could wear sunglasses with my hat) and then this morning, my children jumped in the car with Grammy and Grampy to go stay with them in Tekoa. Juan got back to work and I headed in to my office (with my hat).
Tomorrow morning I have my second chemo. I don't feel nervous in the same way I did last time, but kind of dreading it a bit even though I'm hoping it will be similar to last time and I just won't feel that great.
It was all pretty normal other than the fact I shaved my head! Technically Juan, with a little help from Claire, did the shaving. By Friday night, it was really falling out a lot and kind of driving me nuts. I would have shaved it that night, but I wanted my parents to see my cute short cut in person (they were driving down that night) and also not freak them out. It actually didn't look that cute when they saw it though because I couldn't bear to wash or style it and have hair all over my hands. I didn't want to do it right before Claire's game either because she already fights distraction during her games, and I didn't think that would help. I wore a beanie to the game to limit the fall-out onto my shoulders and also because it was not looking awesome with no washing. As soon as we got back home we got the clippers out.
It didn't hurt, but I think our clippers need sharpening as a few times it kind of pulled. That buzzy feeling next to your scalp is also super weird. I can kind of see why Bryce freaks out... although he is way overreacting. Most dudes probably think nothing of it because it's all they've ever known, but as a woman who never had a buzzing pair of clippers touch anywhere besides my hand it was a pretty crazy feeling. Bryce did not want to help although we asked him. He watched and I'm hoping maybe he won't freak out as much next time it's his turn. Now he likes to pet and pat my head periodically. I used to do that to Juan the first time he shaved his head real short. Claire likes to touch it too and see if she can pull any hair out (and yes, she can, every time). My parents got to witness the event as well and my mom took the pictures below.
I decided to start with a 3 and so Juan got to work and after a bit I asked to look in the mirror. "Oh this is way too long. It needs to be shorter, " I said. He said he didn't tell me, but he actually started using a 5 in case I would freak out. So we swapped out the 5 for a 2... that's a quarter inch.
Before... I told you it looked awesome that morning. Don't worry, it gets more awesome...
Holy wow! That buzzing was a crazy feeling!
Not necessarily a pleasant feeling. Claire was a good helper.
She also tried to hold the mirror so I could see... but mostly I just could see the purple towel.
That's pretty much how I felt the whole time.
Not loving the reflection. Honestly, it's more the color than the (lack of) length. It's so dark! But also totally flecked with gray. Hello old lady!
Yeah... not so sure about this, but hey it is what it is and eventually it will grow back (that is, after if all falls out). On the bright side I can wear my cute hats and wigs now.
This is how I work... I start to cry about something a little, maybe it's that I have no hair or even banging my elbow really hard on something, but then it turns into I have cry about everything crappy that has happened to me recently, and then I cry because my kids aren't babies anymore and they never will be again and sometimes I feel like I can barely even remember when they were babies, and then I cry because I miss my family in Tekoa and I miss the rolling hills of the Palouse, and the lake, and then I'll have to cry because I still miss my Grandpa sometimes, too, and then I have to cry more because eventually everyone you love including yourself will die because that is the one certain thing in life and by the time I get to that point I've pretty much cried about everything that makes me sad in the universe, so I stop crying and move on to folding clothes or something random like that. (P.S. I am well too aware that was a terrible run-on sentence but it's the feeling I'm trying to convey.)
I took a shower right after my "hair cut" because of course there was hair everywhere. Once I got all the loose hair off I tired to really rub my scalp to get more to fall out. Oh yeah, totally falling out and my hands were covered every time. It's rather amazing that given the amount of hair that has fallen out of my head there is still a lot left. It is starting to look thin in places I can tell now, but if it was still longer I don't think you could tell. But I would be able to tell, or at least would be dealing with all the fall-out and that was not good so I'm glad I shaved it. It will be interesting to see how long it takes to be actually bald. I think that might be better than what's going on right now.
After my shower, Juan and I did our Costco run. I decided to just wear a hat. It's going to take some getting used to but it wasn't that bad. I felt mostly normal. Especially with sunglasses and a jacket, I just kind of felt like I was wearing a hat (because I was). A normal person - no, that's the wrong word, I am my normal self, I just don't have much hair right now - a non-cancer/chemo person would wear a hat outside. I don't think I would have felt any more "normal" wearing a wig. When we went out to dinner that night I wore my pink hat which I think is pretty cute and mostly comfy. The server said she'd need to see my ID which still happens to me occasionally.... obviously not because there is any remote possibility anyone thinks I'm under age 21, but just a protocol thing. This server was funny, she looked at my ID and was like, "Wow! I never would have guessed that! You have such a baby face." I just laughed and then I said, "Maybe having no hair is going to make me look younger!" Either she was just being really nice, or I wonder how old she guessed I might be? Do you think sometimes servers ask for ID just because they are curious about your age? They have to know you are over 21... but how far over? She seemed pretty sincere in her surprise over my age... maybe she thought I was 30... 32? I'd take that at this point. That makes me feel old to think it's flattering someone might think I was only 32.
We had a fun day playing outside on Sunday (perfect because I could wear sunglasses with my hat) and then this morning, my children jumped in the car with Grammy and Grampy to go stay with them in Tekoa. Juan got back to work and I headed in to my office (with my hat).
Tomorrow morning I have my second chemo. I don't feel nervous in the same way I did last time, but kind of dreading it a bit even though I'm hoping it will be similar to last time and I just won't feel that great.
Friday, March 6, 2015
Diary of Losing My Hair
Retrospective: Chop hair on February 12. I don't think I mentioned it, but I sobbed that morning as I washed my hair. I remember rinsing it over and over and squeezing the water out of it while I cried... Trying to accept the fact I wouldn't have... get... to do that again for a long time. When I remember that now I realize that is part of why I haven't been as freaked out about losing the rest of it... I already said my goodbyes. First chemo infusion on February 17. The waiting begins... how long before it starts to fall out? I read discussion boards on the internet to find out how long it took for other people. Every nurse or doctor I talk to reconfirms that it will fall out.
Sunday, March 1: Day 12... the chemo nurse said expect it to start falling out between day 12 and 19. I try on all my new hats and mess around with a scarf I have. I google things like "how to tie a scarf on your bald head" and "chemo hats." I find this blog and watch her videos about wearing scarves. I would love to look as pretty as this girl after my hair falls out!
Monday, March 2: I continue to waste time on the internet looking for cute hats, scarves, or other wigs I might want to at least try on. I found some cute things which makes me think it will be ok,; shopping is always kind of fun. Love these hats by Suburban Turban, but kind of pricey and they ship from the UK. I wonder if I could make something similar myself?
How cute are these hats by Muluk13/Muluk. They are out of Portland, OR.
GypsyLoveHeadbands has some really cute styles, too.
What about wigs... I really like the ones Krista loaned me but also have thought I might want a curly style or even a short one now that I'm used to my short hair. It might be fun to have options.
Tuesday, March 3: Day 14... 2 weeks after my first infusion. I've read how this is the magic number for lots of people. Mine's not really falling out yet. Scalp feels a little tender near the crown, like when you've worn a pony tail all day. I was told to expect this feeling. A few hairs fell out when I was styling it but nothing crazy. I read this Q & A article on the internet... a good article with information specific to my chemo drugs (Taxotere and Cytoxan). This part of course jumps out at me... "Q: And the side effects?" A: ...Hair loss. Sorry, no two ways about it, Cytoxan will see to it that you lose some or all of your hair. This will probably happen 2 to 4 weeks after your first injection. It's the same thing Dr. Bridges and all the nurses have said out loud.
Wednesday, March 4: Scalp still a little tender when I woke up, but not bad. I did notice when I plucked a couple gray hairs (Why am I still doing this? Plus it's so stupid because I am not exaggerating when I tell you they are everywhere)... Anyway, I noticed they came right out with no problem. At work I can't stop touching my hair and every time I do at least a couple hairs are left on my fingers. I'm thinking the end is near.
Thursday, March 5: Yep, it's starting to fall out. My scalp was very tender again this morning and in the shower there were more hairs than normal. Still not clumps, but quite a few. A couple times I've scratched my head or just run fingers through my hair only to have several strands left on my fingers. Wonder how many days before I feel like I should just shave it off?
Friday, March 6: Oh my goodness. There is absolutely no question it is totally falling out. There is a fairly significant difference from yesterday to today. I think this morning might be the last time I wash my hair for a long time. It was definitely disturbing seeing all these strands on my hands. I think it would be even worse if my hair was still longer. I don't know if I can stand to wash it again because it felt so... wrong. I think I will wait to shave it until my parents get to see my short hair cut in person tonight/tomorrow and then it's going to be adios. I fully understand why so many people recommend shaving it off when this starts. I also think it might be good for the kids to be here when we shave it off. Seems like it might be disconcerting for them to return from Tekoa to find a bald mom when she wasn't that way when they left.
Sunday, March 1: Day 12... the chemo nurse said expect it to start falling out between day 12 and 19. I try on all my new hats and mess around with a scarf I have. I google things like "how to tie a scarf on your bald head" and "chemo hats." I find this blog and watch her videos about wearing scarves. I would love to look as pretty as this girl after my hair falls out!
Monday, March 2: I continue to waste time on the internet looking for cute hats, scarves, or other wigs I might want to at least try on. I found some cute things which makes me think it will be ok,; shopping is always kind of fun. Love these hats by Suburban Turban, but kind of pricey and they ship from the UK. I wonder if I could make something similar myself?
GypsyLoveHeadbands has some really cute styles, too.
What about wigs... I really like the ones Krista loaned me but also have thought I might want a curly style or even a short one now that I'm used to my short hair. It might be fun to have options.
Tuesday, March 3: Day 14... 2 weeks after my first infusion. I've read how this is the magic number for lots of people. Mine's not really falling out yet. Scalp feels a little tender near the crown, like when you've worn a pony tail all day. I was told to expect this feeling. A few hairs fell out when I was styling it but nothing crazy. I read this Q & A article on the internet... a good article with information specific to my chemo drugs (Taxotere and Cytoxan). This part of course jumps out at me... "Q: And the side effects?" A: ...Hair loss. Sorry, no two ways about it, Cytoxan will see to it that you lose some or all of your hair. This will probably happen 2 to 4 weeks after your first injection. It's the same thing Dr. Bridges and all the nurses have said out loud.
Wednesday, March 4: Scalp still a little tender when I woke up, but not bad. I did notice when I plucked a couple gray hairs (Why am I still doing this? Plus it's so stupid because I am not exaggerating when I tell you they are everywhere)... Anyway, I noticed they came right out with no problem. At work I can't stop touching my hair and every time I do at least a couple hairs are left on my fingers. I'm thinking the end is near.
Thursday, March 5: Yep, it's starting to fall out. My scalp was very tender again this morning and in the shower there were more hairs than normal. Still not clumps, but quite a few. A couple times I've scratched my head or just run fingers through my hair only to have several strands left on my fingers. Wonder how many days before I feel like I should just shave it off?
Friday, March 6: Oh my goodness. There is absolutely no question it is totally falling out. There is a fairly significant difference from yesterday to today. I think this morning might be the last time I wash my hair for a long time. It was definitely disturbing seeing all these strands on my hands. I think it would be even worse if my hair was still longer. I don't know if I can stand to wash it again because it felt so... wrong. I think I will wait to shave it until my parents get to see my short hair cut in person tonight/tomorrow and then it's going to be adios. I fully understand why so many people recommend shaving it off when this starts. I also think it might be good for the kids to be here when we shave it off. Seems like it might be disconcerting for them to return from Tekoa to find a bald mom when she wasn't that way when they left.
Tuesday, March 3, 2015
Conversations on the Playground
I picked up Claire from school one day last week. We got there a little early and so Bryce got to play on the swings at the park. There was another mom there pushing a couple boys on the swings, too. We said hello and then after a bit she complimented my short hair. In my head of course I was thinking about why my hair is so short.
As we chatted, she told me about her friend who had to have brain surgery to remove a tumor and how her head was half shaved and she didn't know what to do, but kind of needed to do something... she said she was going to tell her friend about my cute hair cut.
Well, that kind of opened the door so I told her actually the reason my hair was so short was because chopped it off before I started chemo and now I'm waiting... waiting... waiting for it to start falling out. And so the conversation continued... she asked me some questions. Does chemo make your lose your hair or does radiation? I told her chemo, unless you have radiation on your head, then it can cause hair loss too (I read that somewhere). She said if her friend ends up needing radiation, it would be on her head. Then she told me the friend has been waiting 18 days for the pathology results on her brain tumor, thus doesn't know if she'll need radiation or anything else yet. I'm sure there is more too it, but that seems like a really long time!
It was re-confirmed to me once again that I am so happy I have done my surgery and treatments though St. Luke's/MSTI. This woman's friend was at the other big hospital here, and in her opinion the experience had left much to be desired. It's not the first time I've heard that. I just said if her friend ends up needing cancer treatment, I think MSTI is the place to be.
Anyway, I suppose I will get to have more conversations like that, especially once my hair falls out - IF it falls out... ha ha, I'm still having delusions it might not since it hasn't started to yet, even though every time I've mentioned that thought to a doctor or nurse they said it will fall out. Tomorrow will be 2 weeks since my first treatment which I'm told is kind of a magic number for most chemo drugs and in particular the ones I had. At my learning class, the nurse said usually it happens 12-19 days after the first treatment.
I'd say I'm back to feeling totally normal at this point. Most of last week my mouth felt weird, sort of like when you burn your tongue, but now that seems back to normal which is quite nice. The only not-normal thing is probably just wondering all the time about my hair. Does my scalp feel weird? Is it tingly? Did any hair fall out when I combed it? It's funny because when my hair was long it was always falling out like crazy! In the shower I spent half my time getting the hair off my hands and by the end I'd have a big hair ball to throw it the garbage. Kind of gross, I know. The brush on our vacuum was constantly needing to be cleaned because it had hair all wrapped around it. Since I cut it, it seems like it barely falls out in the shower. Maybe it just doesn't get stuck on my hands because I don't know why it would stop. For someone who has said they aren't super concerned about the hair issue I sure talk about it a lot, don't I?
As we chatted, she told me about her friend who had to have brain surgery to remove a tumor and how her head was half shaved and she didn't know what to do, but kind of needed to do something... she said she was going to tell her friend about my cute hair cut.
Well, that kind of opened the door so I told her actually the reason my hair was so short was because chopped it off before I started chemo and now I'm waiting... waiting... waiting for it to start falling out. And so the conversation continued... she asked me some questions. Does chemo make your lose your hair or does radiation? I told her chemo, unless you have radiation on your head, then it can cause hair loss too (I read that somewhere). She said if her friend ends up needing radiation, it would be on her head. Then she told me the friend has been waiting 18 days for the pathology results on her brain tumor, thus doesn't know if she'll need radiation or anything else yet. I'm sure there is more too it, but that seems like a really long time!
It was re-confirmed to me once again that I am so happy I have done my surgery and treatments though St. Luke's/MSTI. This woman's friend was at the other big hospital here, and in her opinion the experience had left much to be desired. It's not the first time I've heard that. I just said if her friend ends up needing cancer treatment, I think MSTI is the place to be.
Anyway, I suppose I will get to have more conversations like that, especially once my hair falls out - IF it falls out... ha ha, I'm still having delusions it might not since it hasn't started to yet, even though every time I've mentioned that thought to a doctor or nurse they said it will fall out. Tomorrow will be 2 weeks since my first treatment which I'm told is kind of a magic number for most chemo drugs and in particular the ones I had. At my learning class, the nurse said usually it happens 12-19 days after the first treatment.
I'd say I'm back to feeling totally normal at this point. Most of last week my mouth felt weird, sort of like when you burn your tongue, but now that seems back to normal which is quite nice. The only not-normal thing is probably just wondering all the time about my hair. Does my scalp feel weird? Is it tingly? Did any hair fall out when I combed it? It's funny because when my hair was long it was always falling out like crazy! In the shower I spent half my time getting the hair off my hands and by the end I'd have a big hair ball to throw it the garbage. Kind of gross, I know. The brush on our vacuum was constantly needing to be cleaned because it had hair all wrapped around it. Since I cut it, it seems like it barely falls out in the shower. Maybe it just doesn't get stuck on my hands because I don't know why it would stop. For someone who has said they aren't super concerned about the hair issue I sure talk about it a lot, don't I?
Sunday, March 1, 2015
Optimist, Pessimist... Realist
I have always considered myself a glass-is-half-full kind of girl. I still do for the most part. It has been interesting how various family, friends and acquaintances have reacted to my diagnosis. I can honestly say, no one has disappointed me. That's not surprising because I would hope the people I've kept in my life wouldn't do that. Some reactions have been more curious than others.
I have one friend who I have learned is an extreme optimist. She was great when I told her that I had cancer. She of course gave me a big hug and started in about how I was going to be fine, I could beat this, and it was going to be would be ok, etc.
The next day she asked first thing, "So what did you find out? It's not really cancer, right?" Ummm, no, they said it is cancer. She was still kind of incredulous, but not like, real cancer. Well, they called it "invasive ductile carcinoma," so yeah, I'm pretty sure it's real cancer. Then she said something about how it didn't seem like it was really cancer unless it was like, everywhere or something like that. She said something along the lines of, "No. No, I'm just going to be positive. You just have to stay positive!"
I really do believe she was just trying to stay super-duper-extremely-hyper-positive. But after a couple conversations similar to this, I realized that this kind of optimism really wasn't that helpful. Yes, it was "positive" but it wasn't realistic. The reality is that I do have cancer. What good does it to do pretend it's not real? I started to wonder if she really believed me... I was telling someone how Beth had coordinated and delivered a bunch of freezer meals for us (this was back before my surgery) and the other friend asked, "Why?" I said just so we'd have them on hand when we needed them and not have to worry about dinner every night. "But I don't get it, why do you need meals?" she asked. "Because I have cancer!" I said. Perhaps she really didn't think it was true in the beginning... another friend told me how when she passed around a "thinking of you" card for me, this other person again asked, "Why are we doing this?" When the answer was because of my diagnosis, she actually proceeded to say something about how it seemed kind of silly because geez, how many times had she had it? Well, I'm pretty sure the answer to that is a big fat ZERO times. I guess abnormal skin or pap cells are a little different than invasive ductile carcinoma (not that anyone wants abnormal/pre-cancer cells, that's not fun either, but it's a whole different ballpark!).
And so I realized some of my friend's comments were kind of hurtful in that they were trivializing what I was going through, like it was no big deal. I'm sorry, but finding out you have any kind of cancer is a pretty big deal, even in the grand scheme of things. This diagnosis has somewhat changed my life, forever. I think what has really changed is that now and for the rest of my earthly life I will always worry about it coming back. Once I finish my immediate treatments (chemo then radiation) I'm still going to have to take medication every day for the next ~10 years to help prevent recurrence. Plus my kids, especially Claire, are now considered at higher risk to get cancer someday. Claire is supposed to start getting mammograms at age 27 instead of 40 (or 50 if some agencies get their way). I feel bad she will have to know that stress.
We all know that it's possible for anyone to get cancer at any given time. But until you actually do get it, you don't worry about it everyday. Or at least I hope you don't, because that is way too stressful. I like to think that as time goes on, I will worry about it less and less, and I'm sure that will come to pass.
With all that being said, my life hasn't changed in more ways than it has. I like to think I have always been grateful and appreciated the good things in my life and I still do. I don't think cancer was a wake-up call for me in this sense, because I already felt gratitude. For a long time I have tried to think about all the things I'm thankful for each day, usually when I lay in bed before I fall asleep (most times I fall asleep before I'm finished). I've known too many people who have had bad things that they didn't deserve happen to them or their loved ones... things like terminal cancer, miscarriages, and more tragic accidents than I'd like to remember. I feel like I know you shouldn't take life for granted and that any day could be your last.
Sometimes it feels almost amazing to think that life just goes on even when something terrible happens. There are simple moments when I feel so much joy my heart hurts and then I wonder how I can feel so happy amidst so much sadness, and then I feel sad because I feel so happy. It seems so contradictory but that's the only way I can explain it. That's why people say it... Life Goes On. Not only do you still have to do laundry and make dinner but you also find slivers and often huge chunks of joy, hopefully every day.
Over these last few months I have determined that I am an optimist, but I am also a realist, and that doesn't have to mean I'm a pessimist. While I was waiting for the biopsy results, I really couldn't imagine I would get bad news. But I tried. I tried to imagine what it would feel like if I got news I didn't want. How would I handle it? What would I do? Would I burst into tears? How would I tell my family? I wish I didn't have the answer to those questions. Hope for the best, prepare for the worst as they say.
I only told a few people that I had to have the mammogram. I didn't tell my parents because I thought, why cause them worry for no reason. Then when the mammogram led to the biopsy I had to rethink that. I decided I'd better tell my parents, mostly because if I got bad news I didn't want to have to call them out of the blue to say I had cancer. I'm so glad I didn't have to do that - that they at least had a little bit of warning. It was still not a fun call to make, but at least they were expecting a call in the first place. That way I could basically just say hello and start crying and well, there's your answer.
It's very intriguing how differently people will handle a quote-unquote crisis. Most times you just do what you need to do to get through it. Some people are definitely better equipped to deal with stressful situations than others, and obviously there are lots of people in this world who are not able to handle adversity... they turn to drinking or drugs or whatever their vices are.
I'm biased and feel like I have a pretty good system, at least it's working for me, but I understand that doesn't it mean it would work for someone else. I just can't imagine internalizing everything and not talking about it with other people, or holing up inside my house and pretending the world was coming to an end, or pretending the whole thing wasn't real under the guise of optimism. It seems like that would just eat you up inside. It wouldn't solve the problem or make it any easier to deal with. That being said, there have been a few times I just want to hole up, not talk to anyone, and cry until there are no tears left to fall. So I do it, then I dry my eyes and unload the dishwasher or something like that. Because life does go on... no matter what you do nothing else stops.
I have one friend who I have learned is an extreme optimist. She was great when I told her that I had cancer. She of course gave me a big hug and started in about how I was going to be fine, I could beat this, and it was going to be would be ok, etc.
The next day she asked first thing, "So what did you find out? It's not really cancer, right?" Ummm, no, they said it is cancer. She was still kind of incredulous, but not like, real cancer. Well, they called it "invasive ductile carcinoma," so yeah, I'm pretty sure it's real cancer. Then she said something about how it didn't seem like it was really cancer unless it was like, everywhere or something like that. She said something along the lines of, "No. No, I'm just going to be positive. You just have to stay positive!"
I really do believe she was just trying to stay super-duper-extremely-hyper-positive. But after a couple conversations similar to this, I realized that this kind of optimism really wasn't that helpful. Yes, it was "positive" but it wasn't realistic. The reality is that I do have cancer. What good does it to do pretend it's not real? I started to wonder if she really believed me... I was telling someone how Beth had coordinated and delivered a bunch of freezer meals for us (this was back before my surgery) and the other friend asked, "Why?" I said just so we'd have them on hand when we needed them and not have to worry about dinner every night. "But I don't get it, why do you need meals?" she asked. "Because I have cancer!" I said. Perhaps she really didn't think it was true in the beginning... another friend told me how when she passed around a "thinking of you" card for me, this other person again asked, "Why are we doing this?" When the answer was because of my diagnosis, she actually proceeded to say something about how it seemed kind of silly because geez, how many times had she had it? Well, I'm pretty sure the answer to that is a big fat ZERO times. I guess abnormal skin or pap cells are a little different than invasive ductile carcinoma (not that anyone wants abnormal/pre-cancer cells, that's not fun either, but it's a whole different ballpark!).
And so I realized some of my friend's comments were kind of hurtful in that they were trivializing what I was going through, like it was no big deal. I'm sorry, but finding out you have any kind of cancer is a pretty big deal, even in the grand scheme of things. This diagnosis has somewhat changed my life, forever. I think what has really changed is that now and for the rest of my earthly life I will always worry about it coming back. Once I finish my immediate treatments (chemo then radiation) I'm still going to have to take medication every day for the next ~10 years to help prevent recurrence. Plus my kids, especially Claire, are now considered at higher risk to get cancer someday. Claire is supposed to start getting mammograms at age 27 instead of 40 (or 50 if some agencies get their way). I feel bad she will have to know that stress.
We all know that it's possible for anyone to get cancer at any given time. But until you actually do get it, you don't worry about it everyday. Or at least I hope you don't, because that is way too stressful. I like to think that as time goes on, I will worry about it less and less, and I'm sure that will come to pass.
With all that being said, my life hasn't changed in more ways than it has. I like to think I have always been grateful and appreciated the good things in my life and I still do. I don't think cancer was a wake-up call for me in this sense, because I already felt gratitude. For a long time I have tried to think about all the things I'm thankful for each day, usually when I lay in bed before I fall asleep (most times I fall asleep before I'm finished). I've known too many people who have had bad things that they didn't deserve happen to them or their loved ones... things like terminal cancer, miscarriages, and more tragic accidents than I'd like to remember. I feel like I know you shouldn't take life for granted and that any day could be your last.
Sometimes it feels almost amazing to think that life just goes on even when something terrible happens. There are simple moments when I feel so much joy my heart hurts and then I wonder how I can feel so happy amidst so much sadness, and then I feel sad because I feel so happy. It seems so contradictory but that's the only way I can explain it. That's why people say it... Life Goes On. Not only do you still have to do laundry and make dinner but you also find slivers and often huge chunks of joy, hopefully every day.
Over these last few months I have determined that I am an optimist, but I am also a realist, and that doesn't have to mean I'm a pessimist. While I was waiting for the biopsy results, I really couldn't imagine I would get bad news. But I tried. I tried to imagine what it would feel like if I got news I didn't want. How would I handle it? What would I do? Would I burst into tears? How would I tell my family? I wish I didn't have the answer to those questions. Hope for the best, prepare for the worst as they say.
I only told a few people that I had to have the mammogram. I didn't tell my parents because I thought, why cause them worry for no reason. Then when the mammogram led to the biopsy I had to rethink that. I decided I'd better tell my parents, mostly because if I got bad news I didn't want to have to call them out of the blue to say I had cancer. I'm so glad I didn't have to do that - that they at least had a little bit of warning. It was still not a fun call to make, but at least they were expecting a call in the first place. That way I could basically just say hello and start crying and well, there's your answer.
It's very intriguing how differently people will handle a quote-unquote crisis. Most times you just do what you need to do to get through it. Some people are definitely better equipped to deal with stressful situations than others, and obviously there are lots of people in this world who are not able to handle adversity... they turn to drinking or drugs or whatever their vices are.
I'm biased and feel like I have a pretty good system, at least it's working for me, but I understand that doesn't it mean it would work for someone else. I just can't imagine internalizing everything and not talking about it with other people, or holing up inside my house and pretending the world was coming to an end, or pretending the whole thing wasn't real under the guise of optimism. It seems like that would just eat you up inside. It wouldn't solve the problem or make it any easier to deal with. That being said, there have been a few times I just want to hole up, not talk to anyone, and cry until there are no tears left to fall. So I do it, then I dry my eyes and unload the dishwasher or something like that. Because life does go on... no matter what you do nothing else stops.
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