So, I haven't been blogging for a few weeks. Mainly because life has SUCKED and I haven't been in the mood.
TOO. MUCH. DRAMA.
Too many stupid people who just don't get it.
I'm over it all.
But, I thought that I would offer up some insight into my week.
1. Yes, I feel the need to create a drama-free zone, maybe make posters and signs, maybe electronic fencing to keep the stupid at bay. My job/boss/district are just not the healthiest place to be right now. But after this week I've decided that I'm just over it. I'm not getting sucked into the arguments. Time to find a solution without drama or stress.
2. Tamoxifen is making me crazy. No really, I think it is. CRAZY. And it's probably bad that I haven't taken it in a week, right? I know, I KNOW. But I feel slightly more normal without it. And I dread the fact that I really need to start taking it again because it really is helping keep the cancer at bay. But sometimes, in my crazy brain, I do go over the pros and cons of taking it...and sometimes the cons make more sense.
3. I had to schedule my follow-up appointments/scans/blood work this week (for April). Yikes. It's exciting to think that I haven't been into the doctor (except for physical therapy) since December. But it's also scary to wonder, "what if?" This is something that you really never get off your mind after you've been through treatments. What if...
...the scans aren't clean?
...something is wrong?
...the cancer has come back?
There's always that worry that lives in the back of your mind. And it never really goes away. And you hate talking about it because to give it a voice might make it real. It's a constant fear of the unknown.
3a. So, in attempting to schedule these scans, I had an interesting encounter with the secretary who didn't want to make the appointment for me because I "just had a scan a few months ago, and we typically only do these scans once/year so you should be fine until November." Ummmm, NO. That's not actually how it works. Did you see the orders my doctor faxed over requesting this scan? You know, that paperwork sitting right in front of you? Did you become a cancer specialist since the last time I was in that you're giving me medical advice now? Deep. Breath.
4. I wore my "Survivor" t-shirt this week. Even though I feel like I'm jinxing everything by doing so. Damn it, I deserve to wear it. At the very least, I survived the last year and a half of hell and I should get to wear my cool t-shirt! Stupid Cancer!
5. I am desperate to get out of the house. No, not get out and see the world (though I'd like to do that also), actually out of this house...permanently. It actually bothers me to be living in this house where I spent so much time being sick. There are days I don't want to come home, and days I consider running away. I just want to sell it and everything in it...now. And even as much as I love our neighborhood and our amazing neighbors, I can't keep living here and stay sane. Must do something about this soon.
There you have it...not my finest week.
Going for a much more enjoyable week next week...fingers crossed!
Showing posts with label PTSD. Show all posts
Showing posts with label PTSD. Show all posts
Friday, March 28, 2014
Sunday, March 2, 2014
An Open Letter...
In lieu of this week's Friday Five, I've decided to post this letter, even though I'm not really sure who my target audience is.
Dear.....
It is hard not to reflect on your life when you have taken the journey I have over the past 20+ months. I struggle with not letting cancer define me, even though in all honesty, it has completely redefined who I am. And I know that in writing this letter I will likely offend all of you at some point, or make you sad, or make you angry, or all of the above. Please know that my intention is none of those things. I am not writing this letter so that you will take pity on me or treat me with kid gloves. I am simply trying to be honest and say all the things that I never say when you ask me, "How are you doing? No, REALLY, how are you feeling?" Quite honestly, you probably don't want to know the real answer to that question, and you'd get tired of hearing me rant about what it's like to be "the new me" anyway.
You're right, I look pretty good right now. Thank you for noticing. My hair has grown back (and it is an awesome color); I have color in my cheeks again (mainly because we went to Hawaii); I don't look like a sick cancer patient (because I'm still up about 15 pounds from when I started this journey. What I wouldn't give for clothes that fit). If you just met me, or passed me on the street, you would never know the road I've traveled. And that is weird to me. There are at least half a dozen people that I work with now who didn't know me "before." Throughout my life, I will continue to meet people along the way who weren't there during the treatments that knocked me on my ass. They've never read this blog. They don't know that what I've been through has re-shaped my view of the world. At this point in the journey, cancer feels like such a defining experience that I feel like I need to wear a badge that says, "Survivor" or "I kicked cancer's ass" or something. Shout it from the rooftops? Maybe. Will it ever be something I don't feel compelled to start a sentence with? (I don't actually start my sentences with this, by the way, but there are so many times I feel like I have to). So maybe what I'm really trying to say is, you just never know the journey that anyone has been on or is currently traveling. Kindness moves mountains...maybe we should all start practicing more of it?
When I say, "I'm tired" in response to your question, here's what I probably mean:
a) I AM EXHAUSTED. I WANT TO CURL UP IN A BALL AND DIE FOR A FEW DAYS. I completely understand that being back at work...at least full-time...is not helping the situation. One friend recently told me that she was out of work for 3 years before going back. Yeah, that sounds like about how long it will probably take for me to feel like a functional human being again. Folks, cancer knocked me on my ass. And then backed up and ran me over. And then did it again and again and again. The chemo regimen I had is called "the red devil" for a reason. There are days where I really and truly cannot get out of bed...for no real reason other than my body won't function. Still. And the PTSD-and/or-menopause-induced insomnia doesn't help.
b) EVERYTHING HURTS. Everything. And lymphedema is a pain in the ass. Not sure why one day is better or worse than another. If I sit or stand too long in one position, I cannot move. Watching me get up from a seated position (at a restaurant, at my desk, off the couch at home to go to the bathroom) is HILARIOUS. It takes sometimes 10-100 steps for my hip/knee/back/leg to actually function properly so I don't look like a 90-year-old hobbling down the hall. At least it makes Keith and the kids laugh when they see it.
c) I forgot the question, but you were probably asking how I was doing, so I reply with my canned answer.
Here's the thing, every one "does" cancer differently. No two journeys are the same, and I am only speaking to mine. Do I wish I could run a marathon right now? Sure. Do I wish I could have run a marathon during treatments? Actually, yes. Am I happy if someone you know has the energy to run a marathon during the middle of chemo? YES! I think that's terrific. But THAT'S NOT MY STORY. Chemo made me want to die. Curl up in a ball and die. I remember one stretch where I didn't get out of bed for SIX DAYS. And I'm sure that I'm so tired now because I wasn't very active during treatments, but save the lectures because I was too busy trying not to die to give a crap about getting exercise. I was way too exhausted to climb the stairs some days. And I wish I was exaggerating.
When I say, "chemo: the gift that just keeps giving" in response to your question, I might mean a variety of things:
a) I am stupid. HOLY CRAP, legitimately stupid. I have NO ability to retain information. I cannot hold a conversation with anyone, especially students. It hurts me to listen to myself talk about books with kids now because half way through, I forget what we're talking about. Chemo brain rocks!
b) I am so ADD now, it's frightening. Squirrel.
c) Menopause BLOWS. Enough said. Okay, maybe not enough. I am 42 years old and have been in menopause for over a year. SUCKS.
d) It's hard to breathe sometimes...and not because I was trying to exercise. Probably because chemo damaged my heart and radiation damaged my lung.
e) I can't feel the bottoms of my feet ever. Or my hands sometimes. I no longer have fine motor skills. Opening a jar??? Bwahahaha. That's a good joke.
f) I have a heightened sense of smell. (No kidding, school dance in the gym last week. The minute I stepped out of the library door, all I could smell was sugar, pizza, and sweat. Had to leave school immediately).
g) My tastebuds are shot (which really blows since I can smell everything now).
h) My hair has grown back thicker (yeah), curlier (boo...chemo curl sucks), and with a lot less gray (yeah...although I color it so you wouldn't be able to tell anyway). Doesn't make any sense to me, but there's the truth of it.
i) I'm sure there are many other things which I'm just not remembering right now...because I'm stupid.
When I say, "I hate everyone and everything," I probably mean:
a) I hate everyone and everything.
b) I am so tired.
c) I am sad.
d) I am angry.
e) I do not understand why everyone still cares about stupid, unimportant stuff. (Okay, I really do know, but I get frustrated when forced to confront someone who is taking dumb stuff way too seriously).
f) I'm trying not to say that my PTSD has kicked in and I'm trying to hold it together.
What?
I'm angry? I'm sad?
"But why? You're all better now, right?" Here's the thing: PTSD is a bigger bitch than menopause. And I try really hard every day not to let it get the best of me. Or to let you see it. But the reality is, I am an emotional wreck. WRECK. I've cried twice while typing this post and I haven't even gotten to the stuff that's sad. I am at least able to see the panic attacks coming on now, but that doesn't mean they are any fun. Ask the family about the one I had in Hawaii while we were out in the middle of nowhere. I'm sure that the three of them thought someone was going to die. I only have a vague recollection of the event, but it scared me. The best one was trying not to bring the plane down on the way to Vegas. Because my brain was telling me that the panic attack would go away if I opened the plane's emergency exit...while we were somewhere over the Nevada desert. Not kidding. The people sitting next to me were really freaked out.
So, besides PTSD (which, is not just for soldiers, BTW, and which I really need to write about in a post all it's own), what makes me sad and angry?
LOTS!
Ignoring all the "what if the cancer comes back?!" "What if I don't see my kids graduate/get married/grow up?" "What if, what if, what if?" questions that constantly swirl in my head, here are just a few things that I think about...
I feel guilty about everything my family has had to go through, and the damage that it's done to their mental health. None of us will ever be the same, and whether that's a good thing or not, the trauma wrecked havoc and did it's share of damage.
I get sad when I think of all the things that I want to do that I could have, and maybe should have, done long before now. Why was I waiting to check those things off the bucket list?
I lost a year and a half of my life. Literally. I don't actually know how old I am anymore. I answered the question wrong the other day when someone asked. Seriously.
Cancer is isolating. Whether that's by force, or mitigating inherent health risks of hanging out with people who carry germs, I barely saw anyone during the entire time of my treatments. And now I'm so used to hanging out in my room, by myself, it's really hard for me to remember to be a member of a family, community, neighborhood...how to be a friend. I struggle with getting outside the shell that cancer created.
Treatments have bankrupted us. Not just emotionally, but financially as well. Actually bankrupted.
I don't know if I am a survivor. The doctors sure don't call me one (I have to wait 5 years for that), but I feel like I should surely get a label for all that I've put up with! Or a special place in Heaven. Or a better dessert than everyone else. But I also get twitchy anytime someone calls me a survivor...like maybe they're jinxing it for me.
I think I'm a different person. And I desperately didn't want cancer to change me. But the reality is, while cancer did not change me, living through it has definitely made me a different person. And that makes it feel like I've let cancer win. I struggle every day with feeling like I'll always be "that cancer patient" in your eyes. And my own.
I am nesting in reverse. I am getting rid of EVERYTHING. And science major me who took enough psychology classes in college can see why I'm doing it. I know that I'm doing it because I don't want my family to have to sort through all my things if I were to die. And because things don't mean anything to me anymore. But I can't stop. Just spent the last two weeks giving away ALL of my books.
I am so mad that there is not a cure for cancer. And that people are still diagnosed with it every day. Research, people, research!!!
I get so angry when I see that you are not living your dreams. Or you are unhappy. Or you aren't saying, "I love you" to those that matter. Or caring so much about things that don't matter. SERIOUSLY! Life. Is. Too. Short. And I know that unless you've lived through something like I have, you understand the words that I'm saying, but you don't really GET. IT. You think I sound like the teacher on Charlie Brown. But if you aren't happy, then what the hell is the point of being healthy????!!!
So, before I alienate everyone, I'll wind this up with a few simple statements.
Cancer is not for wimps.
At the end of the day, there's no prize for being a workaholic, or the "perfect" wife/mother/family, or having the most stuff. Let it go.
Be happy. And let those around you be happy. Whatever that might look like.
Eat dessert first.
And I'll be doing a regular "Inspirational Quotes" segment here on the blog. So I think I'll end this letter with the first one...
Amen!
It is hard not to reflect on your life when you have taken the journey I have over the past 20+ months. I struggle with not letting cancer define me, even though in all honesty, it has completely redefined who I am. And I know that in writing this letter I will likely offend all of you at some point, or make you sad, or make you angry, or all of the above. Please know that my intention is none of those things. I am not writing this letter so that you will take pity on me or treat me with kid gloves. I am simply trying to be honest and say all the things that I never say when you ask me, "How are you doing? No, REALLY, how are you feeling?" Quite honestly, you probably don't want to know the real answer to that question, and you'd get tired of hearing me rant about what it's like to be "the new me" anyway.
You're right, I look pretty good right now. Thank you for noticing. My hair has grown back (and it is an awesome color); I have color in my cheeks again (mainly because we went to Hawaii); I don't look like a sick cancer patient (because I'm still up about 15 pounds from when I started this journey. What I wouldn't give for clothes that fit). If you just met me, or passed me on the street, you would never know the road I've traveled. And that is weird to me. There are at least half a dozen people that I work with now who didn't know me "before." Throughout my life, I will continue to meet people along the way who weren't there during the treatments that knocked me on my ass. They've never read this blog. They don't know that what I've been through has re-shaped my view of the world. At this point in the journey, cancer feels like such a defining experience that I feel like I need to wear a badge that says, "Survivor" or "I kicked cancer's ass" or something. Shout it from the rooftops? Maybe. Will it ever be something I don't feel compelled to start a sentence with? (I don't actually start my sentences with this, by the way, but there are so many times I feel like I have to). So maybe what I'm really trying to say is, you just never know the journey that anyone has been on or is currently traveling. Kindness moves mountains...maybe we should all start practicing more of it?
When I say, "I'm tired" in response to your question, here's what I probably mean:
a) I AM EXHAUSTED. I WANT TO CURL UP IN A BALL AND DIE FOR A FEW DAYS. I completely understand that being back at work...at least full-time...is not helping the situation. One friend recently told me that she was out of work for 3 years before going back. Yeah, that sounds like about how long it will probably take for me to feel like a functional human being again. Folks, cancer knocked me on my ass. And then backed up and ran me over. And then did it again and again and again. The chemo regimen I had is called "the red devil" for a reason. There are days where I really and truly cannot get out of bed...for no real reason other than my body won't function. Still. And the PTSD-and/or-menopause-induced insomnia doesn't help.
b) EVERYTHING HURTS. Everything. And lymphedema is a pain in the ass. Not sure why one day is better or worse than another. If I sit or stand too long in one position, I cannot move. Watching me get up from a seated position (at a restaurant, at my desk, off the couch at home to go to the bathroom) is HILARIOUS. It takes sometimes 10-100 steps for my hip/knee/back/leg to actually function properly so I don't look like a 90-year-old hobbling down the hall. At least it makes Keith and the kids laugh when they see it.
c) I forgot the question, but you were probably asking how I was doing, so I reply with my canned answer.
Here's the thing, every one "does" cancer differently. No two journeys are the same, and I am only speaking to mine. Do I wish I could run a marathon right now? Sure. Do I wish I could have run a marathon during treatments? Actually, yes. Am I happy if someone you know has the energy to run a marathon during the middle of chemo? YES! I think that's terrific. But THAT'S NOT MY STORY. Chemo made me want to die. Curl up in a ball and die. I remember one stretch where I didn't get out of bed for SIX DAYS. And I'm sure that I'm so tired now because I wasn't very active during treatments, but save the lectures because I was too busy trying not to die to give a crap about getting exercise. I was way too exhausted to climb the stairs some days. And I wish I was exaggerating.
When I say, "chemo: the gift that just keeps giving" in response to your question, I might mean a variety of things:
a) I am stupid. HOLY CRAP, legitimately stupid. I have NO ability to retain information. I cannot hold a conversation with anyone, especially students. It hurts me to listen to myself talk about books with kids now because half way through, I forget what we're talking about. Chemo brain rocks!
b) I am so ADD now, it's frightening. Squirrel.
c) Menopause BLOWS. Enough said. Okay, maybe not enough. I am 42 years old and have been in menopause for over a year. SUCKS.
d) It's hard to breathe sometimes...and not because I was trying to exercise. Probably because chemo damaged my heart and radiation damaged my lung.
e) I can't feel the bottoms of my feet ever. Or my hands sometimes. I no longer have fine motor skills. Opening a jar??? Bwahahaha. That's a good joke.
f) I have a heightened sense of smell. (No kidding, school dance in the gym last week. The minute I stepped out of the library door, all I could smell was sugar, pizza, and sweat. Had to leave school immediately).
g) My tastebuds are shot (which really blows since I can smell everything now).
h) My hair has grown back thicker (yeah), curlier (boo...chemo curl sucks), and with a lot less gray (yeah...although I color it so you wouldn't be able to tell anyway). Doesn't make any sense to me, but there's the truth of it.
i) I'm sure there are many other things which I'm just not remembering right now...because I'm stupid.
When I say, "I hate everyone and everything," I probably mean:
a) I hate everyone and everything.
b) I am so tired.
c) I am sad.
d) I am angry.
e) I do not understand why everyone still cares about stupid, unimportant stuff. (Okay, I really do know, but I get frustrated when forced to confront someone who is taking dumb stuff way too seriously).
f) I'm trying not to say that my PTSD has kicked in and I'm trying to hold it together.
What?
I'm angry? I'm sad?
"But why? You're all better now, right?" Here's the thing: PTSD is a bigger bitch than menopause. And I try really hard every day not to let it get the best of me. Or to let you see it. But the reality is, I am an emotional wreck. WRECK. I've cried twice while typing this post and I haven't even gotten to the stuff that's sad. I am at least able to see the panic attacks coming on now, but that doesn't mean they are any fun. Ask the family about the one I had in Hawaii while we were out in the middle of nowhere. I'm sure that the three of them thought someone was going to die. I only have a vague recollection of the event, but it scared me. The best one was trying not to bring the plane down on the way to Vegas. Because my brain was telling me that the panic attack would go away if I opened the plane's emergency exit...while we were somewhere over the Nevada desert. Not kidding. The people sitting next to me were really freaked out.
So, besides PTSD (which, is not just for soldiers, BTW, and which I really need to write about in a post all it's own), what makes me sad and angry?
LOTS!
Ignoring all the "what if the cancer comes back?!" "What if I don't see my kids graduate/get married/grow up?" "What if, what if, what if?" questions that constantly swirl in my head, here are just a few things that I think about...
I feel guilty about everything my family has had to go through, and the damage that it's done to their mental health. None of us will ever be the same, and whether that's a good thing or not, the trauma wrecked havoc and did it's share of damage.
I get sad when I think of all the things that I want to do that I could have, and maybe should have, done long before now. Why was I waiting to check those things off the bucket list?
I lost a year and a half of my life. Literally. I don't actually know how old I am anymore. I answered the question wrong the other day when someone asked. Seriously.
Cancer is isolating. Whether that's by force, or mitigating inherent health risks of hanging out with people who carry germs, I barely saw anyone during the entire time of my treatments. And now I'm so used to hanging out in my room, by myself, it's really hard for me to remember to be a member of a family, community, neighborhood...how to be a friend. I struggle with getting outside the shell that cancer created.
Treatments have bankrupted us. Not just emotionally, but financially as well. Actually bankrupted.
I don't know if I am a survivor. The doctors sure don't call me one (I have to wait 5 years for that), but I feel like I should surely get a label for all that I've put up with! Or a special place in Heaven. Or a better dessert than everyone else. But I also get twitchy anytime someone calls me a survivor...like maybe they're jinxing it for me.
I think I'm a different person. And I desperately didn't want cancer to change me. But the reality is, while cancer did not change me, living through it has definitely made me a different person. And that makes it feel like I've let cancer win. I struggle every day with feeling like I'll always be "that cancer patient" in your eyes. And my own.
I am nesting in reverse. I am getting rid of EVERYTHING. And science major me who took enough psychology classes in college can see why I'm doing it. I know that I'm doing it because I don't want my family to have to sort through all my things if I were to die. And because things don't mean anything to me anymore. But I can't stop. Just spent the last two weeks giving away ALL of my books.
I am so mad that there is not a cure for cancer. And that people are still diagnosed with it every day. Research, people, research!!!
I get so angry when I see that you are not living your dreams. Or you are unhappy. Or you aren't saying, "I love you" to those that matter. Or caring so much about things that don't matter. SERIOUSLY! Life. Is. Too. Short. And I know that unless you've lived through something like I have, you understand the words that I'm saying, but you don't really GET. IT. You think I sound like the teacher on Charlie Brown. But if you aren't happy, then what the hell is the point of being healthy????!!!
So, before I alienate everyone, I'll wind this up with a few simple statements.
Cancer is not for wimps.
At the end of the day, there's no prize for being a workaholic, or the "perfect" wife/mother/family, or having the most stuff. Let it go.
Be happy. And let those around you be happy. Whatever that might look like.
Eat dessert first.
And I'll be doing a regular "Inspirational Quotes" segment here on the blog. So I think I'll end this letter with the first one...
Amen!
Friday, February 14, 2014
Friday Five
Wow, these Fridays just keep getting closer and closer together. Didn't I just write a Friday Five last week??
So here's my life in a nutshell this week.
1) Monday started with a special "just because/Pay It Forward" treat from a friend: my favorite cupcake AND a book! She wanted to make sure my week started off on a good note. YEAH! Just what I needed (and don't tell anyone, but I ate that cupcake for breakfast...because, why not?!). And I was so excited for the book she picked. Not because I hadn't read it (I actually had...it's one of my favorites that I'm ALWAYS book talking to students), but because I LOVE the book so much and it made my heart happy to see someone else recommending it. It's a quiet little gem of a book that I really think everyone should read. And I was given permission to pass it along, so I promise you will see it out in the world soon. Just deciding who gets it first. (FYI, if you'd like in on the Pay it Forward challenge, there's still time! Comment here, email me, message me on Facebook. I'm taking any and all who want to pay kindness forward...doesn't matter where you live. And it's not about wanting a small something from me. It's about wanting to pay the kindness forward to others and keep the magic going!)
2) Was so grateful for a 3-day work week this week. This working thing is kicking my ass. Four hour naps every other day just are not a functional way to live. Then you tack on the fact that the insomnia keeps me up until 3am every night (I'm sure the four hour naps contribute to that as well), and I am just ALWAYS TIRED. ALWAYS! Spent Thursday and Friday SITTING ON MY ASS. Watching Olympics, reading books, and playing a crazy game that the daughter got me addicted to. Need all these mindless activities to distract me from what I should really be doing (cleaning, cleaning, and more cleaning).
3) I hate PTSD. And menopause. And the fact that I have both. I will spare you the gory details for now, but when I actually kill people or run over small children or start beating the dog, I don't want anyone to be surprised. Cancer...the gift that just keeps giving...
4) Celebrated a friend's 50th birthday this week. A casual event, but so fun. And reminds me that birthdays (and anniversaries, and major life events) are meant to be celebrated! And enjoyed! And spent with those you love! Don't forget this people! EVER! I was actually thinking what an awesome birthday party I was going to throw for myself this year...and then I realized that I was going to be in Vegas for my birthday (because of a library conference). So, I'll definitely be celebrating. But might have to do something before the actual date with all of you...hmmm...
5) I was asked about how my world view has changed since cancer/treatments this week, and I've been trying to construct a coherent answer ever since. It is really something to think about because there are SO MANY THINGS that I just don't give a crap about anymore because these things are not really important. And it's very hard to explain to anyone that has not gone through this type of experience. And I read several books this week (unintentionally) where the main character has cancer and it brought all these emotions back to the forefront (well, that's a lie...those emotions are always there). So, I'm not really answering the question here, but I think that I will do a separate post on the topic soon. I'm still pondering how best to phrase it...
So here's my life in a nutshell this week.
1) Monday started with a special "just because/Pay It Forward" treat from a friend: my favorite cupcake AND a book! She wanted to make sure my week started off on a good note. YEAH! Just what I needed (and don't tell anyone, but I ate that cupcake for breakfast...because, why not?!). And I was so excited for the book she picked. Not because I hadn't read it (I actually had...it's one of my favorites that I'm ALWAYS book talking to students), but because I LOVE the book so much and it made my heart happy to see someone else recommending it. It's a quiet little gem of a book that I really think everyone should read. And I was given permission to pass it along, so I promise you will see it out in the world soon. Just deciding who gets it first. (FYI, if you'd like in on the Pay it Forward challenge, there's still time! Comment here, email me, message me on Facebook. I'm taking any and all who want to pay kindness forward...doesn't matter where you live. And it's not about wanting a small something from me. It's about wanting to pay the kindness forward to others and keep the magic going!)
2) Was so grateful for a 3-day work week this week. This working thing is kicking my ass. Four hour naps every other day just are not a functional way to live. Then you tack on the fact that the insomnia keeps me up until 3am every night (I'm sure the four hour naps contribute to that as well), and I am just ALWAYS TIRED. ALWAYS! Spent Thursday and Friday SITTING ON MY ASS. Watching Olympics, reading books, and playing a crazy game that the daughter got me addicted to. Need all these mindless activities to distract me from what I should really be doing (cleaning, cleaning, and more cleaning).
3) I hate PTSD. And menopause. And the fact that I have both. I will spare you the gory details for now, but when I actually kill people or run over small children or start beating the dog, I don't want anyone to be surprised. Cancer...the gift that just keeps giving...
4) Celebrated a friend's 50th birthday this week. A casual event, but so fun. And reminds me that birthdays (and anniversaries, and major life events) are meant to be celebrated! And enjoyed! And spent with those you love! Don't forget this people! EVER! I was actually thinking what an awesome birthday party I was going to throw for myself this year...and then I realized that I was going to be in Vegas for my birthday (because of a library conference). So, I'll definitely be celebrating. But might have to do something before the actual date with all of you...hmmm...
5) I was asked about how my world view has changed since cancer/treatments this week, and I've been trying to construct a coherent answer ever since. It is really something to think about because there are SO MANY THINGS that I just don't give a crap about anymore because these things are not really important. And it's very hard to explain to anyone that has not gone through this type of experience. And I read several books this week (unintentionally) where the main character has cancer and it brought all these emotions back to the forefront (well, that's a lie...those emotions are always there). So, I'm not really answering the question here, but I think that I will do a separate post on the topic soon. I'm still pondering how best to phrase it...
Friday, December 13, 2013
And the Results Are In!
Monday was scan and blood work day, and Thursday was the follow up appointment with the doc to get the results. And, amazingly enough, it was actually pretty good news...for once. And since I don't want to keep you waiting any longer:
Clean scans!
Blood work was NORMAL!
Spots on the liver, lung, and kidney were all determined to be cysts that the doctor feels do NOT warrant further concern.
The doctor is happy, so I guess that means I should be happy too. And I am, honest. But...well, it's a little weird. I told almost no one the news all day long. Because it did not feel real; like maybe I was jinxing some cosmic force by saying it out loud and getting just a little excited about it.
But, by late afternoon, I was starting to get the texts and emails of concern as people who knew that I had this appointment were in a small panic when I hadn't been disseminating any news whatsoever. So I had to start texting people...and posting it on Facebook...and now, finally, putting it here. Good news for now.
Next round of scans will be April. I'm not sure I'll know what to do with myself.
Oh, yes I do...we're going to Hawaii, which will feel like such a nice reward.
Christmas came just a little early this year in the Yusko household. As one friend put it: Best. Christmas. Present. Ever.
Now, before you worry that I won't have anything to keep me occupied, please note that there's still a lot of things that I have to deal with in the New Year which will definitely keep me busy in January!
The secret (as in, I wasn't telling anyone about it because I thought it signified that the cancer had come back) pain I've been having turns out to be lymphedema. This will require physical therapy. I'm actually hoping that maybe I can get one appointment in before we leave for vacation to start to manage the pain. Which is remarkably annoying, and now that there's an better than average chance I can do something to mitigate it, I'd kind of like to get that started.
Doc also did a big "I told you so" when I told her that my New Year's resolution is to get my PTSD under control. So that maybe I can go back to work someday without wanting to kill people. (Seriously, one of the options on the doctor's "how do you feel?" questionnaire each time is "thoughts of violence towards others." Keith will never let me circle it!) I love that the doc just smiles at me with her "I'm pretty sure I told you that you were a crazy person and not ready to go back to work and needed to get a major handle on your craziness before trying to re-integrate into society" look. So, now she's taking charge of getting me help on that front with one of the amazing doctors at SCCA who specializes in my kind of crazy. This is priority number one in January, honest! Especially because I think the symptoms are actually getting worse and almost caused me to bring down the plane to Vegas with a panic attack. Good times. Especially if you were the couple sitting next to me on the plane who were not related to me.
Until then, I now have some great new meds to keep me sane...which also have the side effect of MAYBE getting the menopause craziness under control (or at least making the symptoms liveable). Yes, chemo induced me into menopause (like a ton of bricks). Yes, tamoxifen makes sure I stay there. Yes, I took my ovaries out and compounded the problem. Holy crap, did that ever compound the problem. It's like living in a sauna here 24/7. I've given up sleeping through the hot flashes because it's just easier to deal with them while awake and watching TV (and playing on the computer). I've been going to bed around 3:30-4:00am every night and getting up at 6:15am. Then maybe going back to sleep from 7:30-9:30am. I'm sure this lack of sleep has nothing to do with exacerbating the PTSD symptoms AT ALL, right?!
As I type this I realize that exactly one year ago today, I was headed to my first round of chemo. So I guess it's only fitting that I got some good news to mark this "anniversary." WOW. What a difference one year can make. I can't even begin to do a coherent post on how I feel about everything that's happened in the last year (and then some). I'll save that for another day...maybe as I'm relaxing on the beach.
Instead, I thought I'd put this montage together of my journey. Now, it took all of 2 minutes to make this using a fun new app I was playing with on my phone (which appears to have cropped the bottoms off of every picture, but I'll figure out how to fix that on the next montage I make). And I was just quickly scrolling through the pics on my phone. But they are in order from start to finish, so it's interesting to watch. Enjoy the ride with me!
And might I just say...WHEW! HALLELUJAH! THANK YOU! AMEN!
Monday, November 18, 2013
How I Am Now...
Today seemed like a good day to chart my "progress" toward returning to a "normal" life. Now, before you start laughing, yes, I know that "normal" is a relative term and that my life has a new normal now. Every day I deal with my new normal, but I couldn't really find a better word.
So, here's how I feel today, which is:
29 weeks after my last chemo treatment. (Seriously? It's already been that long? It feels like just yesterday. I am still traumatized by the thought of waking up every week to willingly put myself through that. 16 rounds of chemo in 20 weeks is still unfathomable to me...some days I don't know how I survived. Some days, I don't think I did survive).
9 weeks after my last radiation treatment.
2 weeks after my 5th, and hopefully FINAL, surgery. KNOCK. ON. WOOD.
Numb: Lots of different ways to interpret this, and it is possible that I am a little numb to the world, but I actually mean this in the most literal sense. My hands and feet are still numb, a residual effect of the chemo. There are days that are better than others which gives me hope that some day, ten years from now, everything will be back to normal. But then there are days when it is worse and I think, no such luck. But I'm so used to it dealing with it now, that I really don't notice it.
Tired: I can't imagine a day when I'll be back to the way I was before all these treatments started. I definitely have good days and bad days as far as my energy level goes, and maybe that's the most annoying thing...that there isn't rhyme nor reason to why I feel especially tired one day over another. I can be feeling great and then suddenly, WHAM! I've hit the wall and cannot go on. Or I'll wake up at noon one day and not have the energy to get out of bed. I've been known to yell at Keith, "why did you let me sleep that long?!?!" To which he always replies, "you obviously needed the sleep." Well, yes, but I would also like to be a functional human being every day, not a sloth. Oh well, a girl can dream.
Angry and Emotional: I'm not even sure what to call this category, but I'm pretty sure that it all goes back to PTSD, which I'm positive that I have. (After further study, I have learned that 10% of cancer survivors have full-blown PTSD, and 60% of cancer survivors have some form of PTSD. I'll be doing a future blog post linking you to some of my findings, written by people who did a much better job of explaining it). I have panic attacks, anxiety, moments of profound anger, unexplainable emotional outbreaks...I feel like I'm a ticking time bomb. When Keith and I went to Vegas in September, I almost had to have them bring the airplane down somewhere over the Nevada desert as I was having a full-blown panic attack. Yes, I know I need to get help for this...I'm working on it. Just been a little busy. This is my goal for December or the new year, I promise.
Stupid: Chemo brain and I are not friends, but I'm finding ways to hopefully make up for my lack of brain power on many days. I watch the kids compensating for how they have learned to deal with me and I feel bad. Teen boy will yell at little sister for constantly repeating a question, but I know that she's doing it because she thinks she has to. I have also since learned that memory issues are a symptom of PTSD (see above), so there's that too.
Sore: Well, that has to be a given, right? I just had surgery 2 weeks ago. I actually feel much better this week than I did last week. But the doctor says that I still have 2-3 weeks until I can "do" things more exhausting than walking. But Vegas for Thanksgiving is still on, because really, that's all about eating and sitting in the sun, and pretty much nothing was going to stop me. Just don't make me laugh.
Old: I feel like I have the body of someone who is at least 20 years older than me. I hope that some of that goes away over time as my energy level increases. But chemo threw me into menopause, and this most recent surgery will make sure that I stay there, and it's not any fun. Chemo-induced menopause hits you like a ton of bricks and never lets up. And since having my ovaries removed, it's just gotten worse. Okay, so it's not like I didn't think it was going to happen, but I really didn't think it could get worse. HA! I greatly misjudged that one! Oh well, nothing I can do about it now...it's not like they're putting anything back. I do have an appointment with the chemo doc after the holiday and we will discuss if there is any way to manage these MOST ANNOYING symptoms.
Tired: Did I mention this already? I'm sure that it doesn't have anything to do with the horrible insomnia that I have (again, a symptom of PTSD and menopause, so not sure who's at fault here). I would say that it's gotten worse since the surgery, and 3:00-4:00am is my new bedtime, if I'm lucky. Which is awesome when everyone has to get up at 6:15am to get ready for school.
Misc: Every time I do presentations about books to kids or grown-ups, I always have a "Misc" category, so why should this be any different.
My range of motion is still not what it was, and this is completely on me for not continuing with physical therapy. At some point, you just start bleeding money and you're tired of being in yet another doctor's office, so these appointments were a casualty of both. But I did just start up my massage treatments again this week.
My taste buds are probably at 70% of what they were, and I know this will not change. So many things no longer taste good to me, and many things that I didn't like before chemo I love now. Crazy! But survivable.
My hair is growing back but I think my eyelashes are starting to fall out again (which scares me). I'm currently pretending that my eyelashes aren't really thinning (ignorance is bliss). The hair is a weird entity that doesn't feel like mine. I don't mind it short at all, but the color is so strange, and the texture is different (it reminds me of cat fur), and the curls are making me insane. But we have determined that we don't think there is nearly the amount of grey there was, so possibly one perk?!
Ongoing concerns: I continue to take Tamoxifen every day (and likely will for the next 5 years). But I'm going to check on this at next appointment because I'm kinda not a fan. I have my first scan and blood work scheduled for December, and then it just keeps going every few months after that. Will keep you updated. Also, it's very hard to explain what it's like to be living a life where there's a possibility of recurrence around every corner. Where you never truly get a clean bill of health. Where you live in fear of what they may find on the next scan. Where they tell me "if you're alive in five years, then the treatment worked." Awesome! I try to think positive and not worry, but there's always a nagging fear out there...
GRATEFUL: Again, it will never be possible for me to thank every one individually for all that you have done for me and my family. I cannot even put into words the gratitude that I feel...I get emotional just thinking about how lucky I am to be surrounded by friends, family, and a community that cares. Really and truly the only thing that I can do is pay it forward (or return the favor if you ever need it). Stay tuned for my Thanksgiving Day post...
Hopeful: Just this past week, I have started to look to the "future" and things that I want to do. A couple of things that are on my radar right now include forming a team (or two) to participate in the June, 2014 Relay for Life event here in Redmond. I will be doing this and will update you once I register. I'm stumped on a team name, but hope to have one in the next few weeks. If enough of you want to join me, we can have 2 teams...or a kids' team. (They recommend 15-20 people/team). Let me know! Or find a Relay for Life event in your area to participate in! I am also setting my sights on competing in an Athleta Iron Girl triathlon in August, 2014. (It's nowhere near Ironman distances so don't be thinking great things about me just yet). But I've enlisted the help of a friend (and Ironman competitor) who has promised to whip me into shape! And to do the event with me! Anyone else want to join?!
And, lastly, my more immediate goal is to read ALL the back issues of Food Network magazine that I haven't touched since October, 2012. Food has definitely not been my friend this past year, but now, I'm in a place where I want to peruse them! Grateful for these small miracles!
So, here's how I feel today, which is:
29 weeks after my last chemo treatment. (Seriously? It's already been that long? It feels like just yesterday. I am still traumatized by the thought of waking up every week to willingly put myself through that. 16 rounds of chemo in 20 weeks is still unfathomable to me...some days I don't know how I survived. Some days, I don't think I did survive).
9 weeks after my last radiation treatment.
2 weeks after my 5th, and hopefully FINAL, surgery. KNOCK. ON. WOOD.
Numb: Lots of different ways to interpret this, and it is possible that I am a little numb to the world, but I actually mean this in the most literal sense. My hands and feet are still numb, a residual effect of the chemo. There are days that are better than others which gives me hope that some day, ten years from now, everything will be back to normal. But then there are days when it is worse and I think, no such luck. But I'm so used to it dealing with it now, that I really don't notice it.
Tired: I can't imagine a day when I'll be back to the way I was before all these treatments started. I definitely have good days and bad days as far as my energy level goes, and maybe that's the most annoying thing...that there isn't rhyme nor reason to why I feel especially tired one day over another. I can be feeling great and then suddenly, WHAM! I've hit the wall and cannot go on. Or I'll wake up at noon one day and not have the energy to get out of bed. I've been known to yell at Keith, "why did you let me sleep that long?!?!" To which he always replies, "you obviously needed the sleep." Well, yes, but I would also like to be a functional human being every day, not a sloth. Oh well, a girl can dream.
Angry and Emotional: I'm not even sure what to call this category, but I'm pretty sure that it all goes back to PTSD, which I'm positive that I have. (After further study, I have learned that 10% of cancer survivors have full-blown PTSD, and 60% of cancer survivors have some form of PTSD. I'll be doing a future blog post linking you to some of my findings, written by people who did a much better job of explaining it). I have panic attacks, anxiety, moments of profound anger, unexplainable emotional outbreaks...I feel like I'm a ticking time bomb. When Keith and I went to Vegas in September, I almost had to have them bring the airplane down somewhere over the Nevada desert as I was having a full-blown panic attack. Yes, I know I need to get help for this...I'm working on it. Just been a little busy. This is my goal for December or the new year, I promise.
Stupid: Chemo brain and I are not friends, but I'm finding ways to hopefully make up for my lack of brain power on many days. I watch the kids compensating for how they have learned to deal with me and I feel bad. Teen boy will yell at little sister for constantly repeating a question, but I know that she's doing it because she thinks she has to. I have also since learned that memory issues are a symptom of PTSD (see above), so there's that too.
Sore: Well, that has to be a given, right? I just had surgery 2 weeks ago. I actually feel much better this week than I did last week. But the doctor says that I still have 2-3 weeks until I can "do" things more exhausting than walking. But Vegas for Thanksgiving is still on, because really, that's all about eating and sitting in the sun, and pretty much nothing was going to stop me. Just don't make me laugh.
Old: I feel like I have the body of someone who is at least 20 years older than me. I hope that some of that goes away over time as my energy level increases. But chemo threw me into menopause, and this most recent surgery will make sure that I stay there, and it's not any fun. Chemo-induced menopause hits you like a ton of bricks and never lets up. And since having my ovaries removed, it's just gotten worse. Okay, so it's not like I didn't think it was going to happen, but I really didn't think it could get worse. HA! I greatly misjudged that one! Oh well, nothing I can do about it now...it's not like they're putting anything back. I do have an appointment with the chemo doc after the holiday and we will discuss if there is any way to manage these MOST ANNOYING symptoms.
Tired: Did I mention this already? I'm sure that it doesn't have anything to do with the horrible insomnia that I have (again, a symptom of PTSD and menopause, so not sure who's at fault here). I would say that it's gotten worse since the surgery, and 3:00-4:00am is my new bedtime, if I'm lucky. Which is awesome when everyone has to get up at 6:15am to get ready for school.
Misc: Every time I do presentations about books to kids or grown-ups, I always have a "Misc" category, so why should this be any different.
My range of motion is still not what it was, and this is completely on me for not continuing with physical therapy. At some point, you just start bleeding money and you're tired of being in yet another doctor's office, so these appointments were a casualty of both. But I did just start up my massage treatments again this week.
My taste buds are probably at 70% of what they were, and I know this will not change. So many things no longer taste good to me, and many things that I didn't like before chemo I love now. Crazy! But survivable.
My hair is growing back but I think my eyelashes are starting to fall out again (which scares me). I'm currently pretending that my eyelashes aren't really thinning (ignorance is bliss). The hair is a weird entity that doesn't feel like mine. I don't mind it short at all, but the color is so strange, and the texture is different (it reminds me of cat fur), and the curls are making me insane. But we have determined that we don't think there is nearly the amount of grey there was, so possibly one perk?!
Ongoing concerns: I continue to take Tamoxifen every day (and likely will for the next 5 years). But I'm going to check on this at next appointment because I'm kinda not a fan. I have my first scan and blood work scheduled for December, and then it just keeps going every few months after that. Will keep you updated. Also, it's very hard to explain what it's like to be living a life where there's a possibility of recurrence around every corner. Where you never truly get a clean bill of health. Where you live in fear of what they may find on the next scan. Where they tell me "if you're alive in five years, then the treatment worked." Awesome! I try to think positive and not worry, but there's always a nagging fear out there...
GRATEFUL: Again, it will never be possible for me to thank every one individually for all that you have done for me and my family. I cannot even put into words the gratitude that I feel...I get emotional just thinking about how lucky I am to be surrounded by friends, family, and a community that cares. Really and truly the only thing that I can do is pay it forward (or return the favor if you ever need it). Stay tuned for my Thanksgiving Day post...
Hopeful: Just this past week, I have started to look to the "future" and things that I want to do. A couple of things that are on my radar right now include forming a team (or two) to participate in the June, 2014 Relay for Life event here in Redmond. I will be doing this and will update you once I register. I'm stumped on a team name, but hope to have one in the next few weeks. If enough of you want to join me, we can have 2 teams...or a kids' team. (They recommend 15-20 people/team). Let me know! Or find a Relay for Life event in your area to participate in! I am also setting my sights on competing in an Athleta Iron Girl triathlon in August, 2014. (It's nowhere near Ironman distances so don't be thinking great things about me just yet). But I've enlisted the help of a friend (and Ironman competitor) who has promised to whip me into shape! And to do the event with me! Anyone else want to join?!
And, lastly, my more immediate goal is to read ALL the back issues of Food Network magazine that I haven't touched since October, 2012. Food has definitely not been my friend this past year, but now, I'm in a place where I want to peruse them! Grateful for these small miracles!
Thursday, October 24, 2013
I Feel Like I Have PTSD
Yesterday was further proof that I probably should not be at school because I don't think that I am a functional human being.
In fact, I think I might have PTSD. Now, I know nothing about PTSD, but it would not surprise me to find out that I have some of the same symptoms.
I have been suffering from lots of craziness, because my brain is WRECKED. Depression, anxiety, panic attacks, breakdowns...I've got it all. And have been known to break into TEARS for no real reason at all.
Case in point, yesterday. I am at a staff meeting...really just listening. And then, when I've got the floor to just remind people that they've got about a week until I'm out again for months (another surgery, remember?!) and that they might want to tap into my knowledge base while they can, I sort of lost it. And might have talked about how much I don't really want to ever come back. And there may have been mention of other things I'm not a fan of. And I was trying REALLY HARD not to cry in front of all these people. Please note, these people did NOTHING to me...nothing. It was all my brain.
I managed to make it to my car after the meeting (luckily at the end of the day), and cried the entire way to the grocery store, and while in line at the bank, and the whole way home again. A good 45 minutes of wallowing in how much I don't want to be working. And all the things that suck about my life. Because once I get rolling, there's no turning it off.
Rational or not...that's my life.
And could be why the oncologist said if I don't get therapeutic help soon, I'm kidding myself.
It's hard when everyone around you thinks that you are "back to normal." Your hair comes back, you look relatively healthy, you're done with treatments, so of course you should be back at work and doing all those things that you used to do, right? Not so much. Really need to reevaluate.
Luckily, this weekend I am going to a conference sponsored by the folks at Living Beyond Breast Cancer. Hoping to gain LOTS of information that I can use to try and put myself back together. Will surely be writing posts about the experience next week.
In the meantime, be warned...I can break out into tears without any notice!
In fact, I think I might have PTSD. Now, I know nothing about PTSD, but it would not surprise me to find out that I have some of the same symptoms.
I have been suffering from lots of craziness, because my brain is WRECKED. Depression, anxiety, panic attacks, breakdowns...I've got it all. And have been known to break into TEARS for no real reason at all.
Case in point, yesterday. I am at a staff meeting...really just listening. And then, when I've got the floor to just remind people that they've got about a week until I'm out again for months (another surgery, remember?!) and that they might want to tap into my knowledge base while they can, I sort of lost it. And might have talked about how much I don't really want to ever come back. And there may have been mention of other things I'm not a fan of. And I was trying REALLY HARD not to cry in front of all these people. Please note, these people did NOTHING to me...nothing. It was all my brain.
I managed to make it to my car after the meeting (luckily at the end of the day), and cried the entire way to the grocery store, and while in line at the bank, and the whole way home again. A good 45 minutes of wallowing in how much I don't want to be working. And all the things that suck about my life. Because once I get rolling, there's no turning it off.
Rational or not...that's my life.
And could be why the oncologist said if I don't get therapeutic help soon, I'm kidding myself.
It's hard when everyone around you thinks that you are "back to normal." Your hair comes back, you look relatively healthy, you're done with treatments, so of course you should be back at work and doing all those things that you used to do, right? Not so much. Really need to reevaluate.
Luckily, this weekend I am going to a conference sponsored by the folks at Living Beyond Breast Cancer. Hoping to gain LOTS of information that I can use to try and put myself back together. Will surely be writing posts about the experience next week.
In the meantime, be warned...I can break out into tears without any notice!
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