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!
Thank you, Shauna! You said it all very well, and I totally get it! I also say this with a feeling of what I can only call guilt (really?) in the back of my mind that I don't really qualify to comment or relate to you because my cancer was so much "simpler" or "easier" (yes, it certainly was shorter!) than yours. Just another way that this damn disease makes us feel crazy, isolated and different, I guess. I loved what you said, and you certainly aren't alone! I admire your unflinching ability to put it into words so well!
ReplyDeleteShauna, thanks for letting us know how you feel, what you think and what you believe. I think it's great for us all to get a shot of reality and not get sucked into the day-to-day existence that blinds us to what really matters in this world. We think of you often - not just because of what you've endured, but because of who you are and the example you set for us all. Thank you for being honest and telling it like it is. Thank you for being you -- in all your wonderful ways.
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