Today marks my two year Cancerversary. Hey, regardless of what you think about Lance Armstrong, I am still a fan. And it's his outlook about celebrating the day he was diagnosed with cancer as a turning point in his life that resonates just a little with me.
I haven't been blogging much this summer and I apologize for that. It's not that I haven't had anything to say. To tell the truth, I discovered that someone (or maybe more than one someone) is out there passing off my posts as her own story. And it made me angry. And I wanted to take down the blog and not give her the ability to steal anymore of my posts. But just yesterday alone, this blog got 176 hits so it is still doing some good and I am glad that I decided not to take it down. But I've been in radio silence mode. (And yes, I know that I should deal with her, but I just haven't had the time or energy to...it's on my "to do list," honest!).
So, I thought I would give you a brief update on where I am at...
I completed the Iron Girl triathlon this summer!!! Thanks to the help and encouragement and talking me down from the ledge of two very dear friends. This is the post I am most sad not to have written this summer. I promise that I will write all the details about how much FUN it was. And I cried just a little when I finished it and I could hear the announcer/DJ guy say, "Shauna Yusko, you're about to finish your first Iron Girl triathlon. And you're a cancer survivor. WAY TO GO!" I get a little teary now just typing this.
I started a new job. Which I adore. In a school that feels calm and happy. Several people out there know what I'm talking about even if it is a little hard to explain. I desperately miss my Evergreen peeps because I thought that I would be there forever. But the energy of the building was just all wrong for me now. And this new school is great! And I get to work part-time. And it just feels like the right place to be.
Teenage boy is on track to graduate this June, even after his attempts to derail his life. We are turning into the month where it historically all goes wrong for him, so fingers crossed we get out the other side in one piece. I'm not sure if it's the weather, the subconscious memories of the diagnosis, or what makes him start to spiral in October and not come back out until February, but we are really praying this year will be different. And that we finally have a handle on the beast that is depression.
I found my post from last year's cancervesary and thought I would just copy it here, because I still mean all of those words, and everyone still asks what it was like to get THAT phone call.
I'm not sure that there is anything I would add to the "advice" at the end of the post. I still believe it all. If you aren't doing something that you love, with the people that you love, in a place that you love, WHY THE HELL NOT?! You should be happy!
There is something to celebrate about every day...find it.
Forget the bucket list. Do the things that you've been meaning to do now! Start checking them off. I read a life-affirming book this summer called "Blind Spot for Boys" (by the amazing Justina Chen). And while it's a book for teens and the teenage narrator is the main character, it is her parents' journey dealing with illness, and another adult character's overcoming adversity to live her dream that really resonated with me. In it, the parents had created a "50 Before 50" list of things that they wanted to do before turning 50. But they never did because of...life...jobs...kids...everything that gets in the way. And then the dad gets sick and they will never have the time to do those 50 things. So they pick the one big one and go for it. I do not want to be that person with all those things left to do on my list. I'm gonna go for it! And I started this summer with the triathlon. What's on your list?
As promised, last year's post from this date:
One year ago today I was sitting at my desk after school when my cell phone rang. It was my husband, telling me the doctor had called the house looking for me but wouldn't leave a message. (I didn't tell him at that moment, but that was actually the point that I knew it was bad news. When the doctor is trying to track you down IMMEDIATELY, it's really not a good thing). What felt like 5 seconds later, the surgeon was calling me with the news: cancer. And everything else she said after that word was, "blah, blah, blah...cancer...blah, blah, blah, surgery...blah, blah, blah." Seriously, it really was like the Charlie Brown teacher talking. You DO NOT hear anything after the "C" word.
I hung up the phone, sat at my desk for a moment, and then went home. Where I spent maybe 10 minutes trying to decide if I was going to tell Keith before or after he got into his GIANT truck and drove to referee a high school soccer game. I should've been nicer, but misery loves company, so I told him. And that was the beginning of our crazy cancer journey.
I am still dealing with it every day and really not in the frame of mind to wax poetic about my thoughts.
But I have learned a lot in the last year: about myself, friends, family, what is important, what is NOT important...the list goes on.
What I want to say most importantly today is that I have learned that life's too short my friends. It really is. And you should be LIVING it...to the fullest...everyday. Always.
Be happy.
Say I love you.
Be thankful.
Don't take anything for granted.
Do what you love.
Don't wait for "someday."
Oh, and eat dessert first.
Showing posts with label how I feel. Show all posts
Showing posts with label how I feel. Show all posts
Thursday, October 9, 2014
Friday, March 28, 2014
Friday Five
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!
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!
Wednesday, March 5, 2014
To My Husband...
I've been meaning to write this post for quite some time. And I keep starting it and then saving it for later. If I was actually really smart, I would have posted it on Valentine's Day...or maybe wait until our anniversary...and then it could double as a gift.
But why not now?! And based upon my own "life's too short, tell people how you feel" mantra, I shouldn't delay. And since he only occasionally keeps up with the blog (reading it is kind of like having flashbacks for those of us in the trenches), he will probably never see this anyway. And I'm sure if no one ever tells him it exists, we could start a betting pool to see how long it would take him to read it...
Dear Keith,
We have been together forever. And then some. There are very few memories I have that don't include you. We have weathered some major storms in our lifetime...more storms than two people should have to face. Each time we plowed through hoping to simply get out the other side with minimal damage. But, to be honest, I think each trauma left it's mark on both of us.
It is no secret that the past few years (pre-cancer) we were not friends. It might even be safe to say that we didn't like each other very much. I don't think anyone in our family was happy. One stressor too many had just pushed me into a place where I didn't care any more. And now that I can look back on it, I am so monumentally sorry for those shitty years. I'd give the world for a do-over.
Like they say, be careful what you wish for. Because now I get the do-over, but I had to go through hell to get it.
No one knows what it was like for me these past 20+ months. But, if anyone comes close, you sure do. You've been there in the trenches every step of the way.
I'm sorry:
...for all the times that people asked, "How's Keith doing?" and I had to say that I didn't know. I'm sorry if it sounded like I didn't care. But I just didn't have the strength to care about anyone but myself.
...for all the times that you had to hear me say, "I'm done with treatment, and I don't care if that means I'm going to die." There were days when I really didn't care about leaving you and the kids because I was so over the entire process. And I'm sure that makes me a bad person, and you might have even thought I was terrible for thinking it, but you never said so. And you let me rant. And you promised to agree with me (even though I know you really didn't).
...for all the times that I said, "gawd, get out of here, that food smells." But it really did. Who'd have thought trail mix could smell so awful?!
...that I don't have any idea what it was like to be you throughout this ordeal.
...that I will not be a good caregiver if our situations are ever reversed. I am going to suck at it. I've considered running you over with the car instead. You might hear words like, "suck it up," "get over yourself," or "you think this is bad?!" I cannot imagine going through this process again, and I'm not sure that I'll be able to come up with the requisite sympathy. Though I will be able to bring the jokes.
Thank you:
...for running to get crappy McDonald's milkshakes and bland chicken noodle soup at all hours of the day and night because those were the only things that I could eat for days at a time. And for making three different kinds of soup until we found one that worked. And for heating it up until it was just the right temperature. Lord, I sound like Goldilocks...
...for laughing with me throughout the entire process. And at the doctors. And getting yourself put on the "no-fly list" at one of them. (Kidding). Thank you for appreciating my morbid sense of humor. Perhaps it's not the most healthy, (and you do realize that our son has it also, so we might not win the best parents award), but laughter was definitely needed on many an occasion.
...for respecting my wishes to be alone during chemo even though EVERYONE thought that made you a bad person. The looks they gave you...
...for shaving my head. And bringing humor to the situation. And for shaving your head for all those months.
...for finding my Katy Perry wig!
...for telling me you'd do whatever I wanted when it came to treatment options. And for backing me up when I went against medical advice. You had some pretty hard shoes to fill when I needed to find friends to sub for you at various doctor appointments.
...for being there every day. And taking care of me so completely. I will never find all the right words to express how I feel. And I can never say thank you enough.
Please know:
...that I am so grateful that we have the same outlook on life now. And what the future holds. And where we want to be.
...that I intend to live a life that is all about being happy.
...that it is unlikely I will ever go through treatments again. Every day I saw all the old people going through chemo/radiation/both and it made me so monumentally sad that this was how they were spending their last days. Sorry, that is not going to be me.
...that we've both come out the other side of this completely changed. And I think it's a good thing. And I think that means that we get a do-over on life...and love...and us.
But why not now?! And based upon my own "life's too short, tell people how you feel" mantra, I shouldn't delay. And since he only occasionally keeps up with the blog (reading it is kind of like having flashbacks for those of us in the trenches), he will probably never see this anyway. And I'm sure if no one ever tells him it exists, we could start a betting pool to see how long it would take him to read it...
Dear Keith,
We have been together forever. And then some. There are very few memories I have that don't include you. We have weathered some major storms in our lifetime...more storms than two people should have to face. Each time we plowed through hoping to simply get out the other side with minimal damage. But, to be honest, I think each trauma left it's mark on both of us.
It is no secret that the past few years (pre-cancer) we were not friends. It might even be safe to say that we didn't like each other very much. I don't think anyone in our family was happy. One stressor too many had just pushed me into a place where I didn't care any more. And now that I can look back on it, I am so monumentally sorry for those shitty years. I'd give the world for a do-over.
Like they say, be careful what you wish for. Because now I get the do-over, but I had to go through hell to get it.
No one knows what it was like for me these past 20+ months. But, if anyone comes close, you sure do. You've been there in the trenches every step of the way.
I'm sorry:
...for all the times that people asked, "How's Keith doing?" and I had to say that I didn't know. I'm sorry if it sounded like I didn't care. But I just didn't have the strength to care about anyone but myself.
...for all the times that you had to hear me say, "I'm done with treatment, and I don't care if that means I'm going to die." There were days when I really didn't care about leaving you and the kids because I was so over the entire process. And I'm sure that makes me a bad person, and you might have even thought I was terrible for thinking it, but you never said so. And you let me rant. And you promised to agree with me (even though I know you really didn't).
...for all the times that I said, "gawd, get out of here, that food smells." But it really did. Who'd have thought trail mix could smell so awful?!
...that I don't have any idea what it was like to be you throughout this ordeal.
...that I will not be a good caregiver if our situations are ever reversed. I am going to suck at it. I've considered running you over with the car instead. You might hear words like, "suck it up," "get over yourself," or "you think this is bad?!" I cannot imagine going through this process again, and I'm not sure that I'll be able to come up with the requisite sympathy. Though I will be able to bring the jokes.
Thank you:
...for running to get crappy McDonald's milkshakes and bland chicken noodle soup at all hours of the day and night because those were the only things that I could eat for days at a time. And for making three different kinds of soup until we found one that worked. And for heating it up until it was just the right temperature. Lord, I sound like Goldilocks...
...for laughing with me throughout the entire process. And at the doctors. And getting yourself put on the "no-fly list" at one of them. (Kidding). Thank you for appreciating my morbid sense of humor. Perhaps it's not the most healthy, (and you do realize that our son has it also, so we might not win the best parents award), but laughter was definitely needed on many an occasion.
...for respecting my wishes to be alone during chemo even though EVERYONE thought that made you a bad person. The looks they gave you...
...for shaving my head. And bringing humor to the situation. And for shaving your head for all those months.
...for finding my Katy Perry wig!
...for telling me you'd do whatever I wanted when it came to treatment options. And for backing me up when I went against medical advice. You had some pretty hard shoes to fill when I needed to find friends to sub for you at various doctor appointments.
...for being there every day. And taking care of me so completely. I will never find all the right words to express how I feel. And I can never say thank you enough.
Please know:
...that I am so grateful that we have the same outlook on life now. And what the future holds. And where we want to be.
...that I intend to live a life that is all about being happy.
...that it is unlikely I will ever go through treatments again. Every day I saw all the old people going through chemo/radiation/both and it made me so monumentally sad that this was how they were spending their last days. Sorry, that is not going to be me.
...that we've both come out the other side of this completely changed. And I think it's a good thing. And I think that means that we get a do-over on life...and love...and us.
Love, Me
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, February 7, 2014
Friday Five
The Good, The Bad, & The Ugly this week:
1) I had a panic attack on Monday while teaching a class. It was awesome (NOT!). Real and true panic attack. Thankful for my friend who's class it happened to be and could roll with the punches. Fun times all around folks...
2) Wednesday was the parade celebrating the Seahawks Super Bowl victory. MANY people skipped work and school that day to attend. I had no plans of attending for a variety of reasons: see above mention of panic attack...this crowd of people would likely set off another one; there is no way that I could have stood up that long; it was FREEZING COLD out.
However, the teenage boy wanted to skip school to attend with some friends. Her prepared a very cogent argument on why he should skip school, and even smartly included words/phrases like "life is too short." Good job! Bonus points! Absolutely! Go...have fun...don't freeze to death. Yep, I've become that parent.
3) The Olympics have started! YEAH! Time to spend every waking moment watching sports. Luckily I also read while this is going on, so I get to spend quite a bit of time doing my two favorite things. Now, if only it would motivate me to workout...
4) Will there ever be a time when I am not tired/sore/angry/all of the above? By Friday afternoon I REALLY want to die. And I hate everyone and everything. Keith and I went to a movie and dinner on Friday night and I knew that it was going to be a struggle to stay awake. Luckily, the movie was INCREDIBLE. However, I was SO tired that I was yawning throughout the show. And so very stiff and sore sitting in the seat for that long, after working all week (and being on my feet all day Friday). Watching me get out of that seat after the movie was over was a sight to behold I'm sure.
5) Cancer is really isolating. For a lot of reasons. And I won't spend the time right now waxing poetic on the how and why, but this week I really felt the ramifications of being so sick for so long. It's really hard to get back out into the world.
Another bonus one:
6) Tuesday was World Cancer Day. Thanks to all of you that turned your Facebook/Twitter profiles purple in honor of Cancer Survivors! It was great to see so much purple! And feel the support!
1) I had a panic attack on Monday while teaching a class. It was awesome (NOT!). Real and true panic attack. Thankful for my friend who's class it happened to be and could roll with the punches. Fun times all around folks...
2) Wednesday was the parade celebrating the Seahawks Super Bowl victory. MANY people skipped work and school that day to attend. I had no plans of attending for a variety of reasons: see above mention of panic attack...this crowd of people would likely set off another one; there is no way that I could have stood up that long; it was FREEZING COLD out.
However, the teenage boy wanted to skip school to attend with some friends. Her prepared a very cogent argument on why he should skip school, and even smartly included words/phrases like "life is too short." Good job! Bonus points! Absolutely! Go...have fun...don't freeze to death. Yep, I've become that parent.
3) The Olympics have started! YEAH! Time to spend every waking moment watching sports. Luckily I also read while this is going on, so I get to spend quite a bit of time doing my two favorite things. Now, if only it would motivate me to workout...
4) Will there ever be a time when I am not tired/sore/angry/all of the above? By Friday afternoon I REALLY want to die. And I hate everyone and everything. Keith and I went to a movie and dinner on Friday night and I knew that it was going to be a struggle to stay awake. Luckily, the movie was INCREDIBLE. However, I was SO tired that I was yawning throughout the show. And so very stiff and sore sitting in the seat for that long, after working all week (and being on my feet all day Friday). Watching me get out of that seat after the movie was over was a sight to behold I'm sure.
5) Cancer is really isolating. For a lot of reasons. And I won't spend the time right now waxing poetic on the how and why, but this week I really felt the ramifications of being so sick for so long. It's really hard to get back out into the world.
Another bonus one:
6) Tuesday was World Cancer Day. Thanks to all of you that turned your Facebook/Twitter profiles purple in honor of Cancer Survivors! It was great to see so much purple! And feel the support!
Saturday, January 25, 2014
Friday Five...a Day Late...
Whoops! This is a day late to actually be a true Friday Five, but we can all pretend, right?
1. First and foremost, I signed up/created a team for the Relay for Life event happening here in June! Team Stupid Cancer...here we come! What is Relay for Life?
"At Relay For Life events, communities come together to honor cancer survivors, remember loved ones lost, and fight back. Relay For Life teams camp out overnight and take turns walking or running around a track at a local high school. Events are up to 24 hours long, and because cancer never sleeps, each team is asked to have at least one participant on the track at all times."
I am excited to participate in this event for many reasons:
2. Naps are a part of my life. I could not survive without them. My week looked like this:
Monday: holiday...attempt to clean house...ha, ha, ha, that's funny since it's possible all I did was sit on my ass;
Tuesday: Work 1/2 day, physical therapy;
Wednesday: Work, meetings, plotting world domination through making reading fun, 4 HOUR NAP;
Thursday: Had to take a sick day because I could not move. Not exaggerating AT ALL. More physical therapy, where she mentioned that working full-time is obviously a horrible idea and I should consider going to half-time. Yes honey, I've actually thought about that, trust me. Now, if only I could actually afford to do that.
Friday: Worked all day, came home and took another nap. Wild and crazy week for me!
3. Katy Perry is coming to town and I got tickets. The story about how I finally got a hold of the presale tickets is HILARIOUS, but I did it. I can't explain how much I need to go see this concert, but Katy's music has really gotten me through some DARK times this past year, and I need to be there in person to celebrate! Now, who's coming with me???
4. My brain still does not function like it used to and the only way that I can survive at work is to write a sticky note every time I think of something I need to do/want to do/have to remember/book title/instructions from someone. My desk is currently COVERED with them. Again, not an exaggeration. There's at least 25 of them on there right now. A friend came into my office on Friday and started laughing about this organizational system I have going...it really is a sight to behold.
5. Because I forgot to post the Friday Five on Friday, I can actually show you the family pictures we had taken today rather than just mention that we are going to get them done. A friend volunteered her services back when I was finishing up treatments, and I decided to wait until after Hawaii so that we might all look like we hadn't really holed up inside our house for the past year. It was FREEZING this morning...and EARLY. But it was beautiful out. And she captured some AMAZING shots. I am so grateful for this experience and these images. I know that I say it all the time now and you don't believe me, but life is too short, so you really need to get these things done folks. Take the trips, cross the things off your bucket list, and get some photos taken of you and your family. And I know that my kids wanted to die because it was "so early on a Saturday" but they had a good time (teenage boy even said, "it was actually kinda fun...not nearly as bad as I thought it was going to be"), but I hope that some day they appreciate these photos. I wish I had more of my brother and I together...from when we were kids and today. (But since we both hate being in pictures, that probably explains it. I'm sure my mother just gave up). So thank you Heidi (Heidi King Photography) for your beautiful photos which we will truly treasure. (And she doesn't know I'm plugging her services on the blog, so please don't think she's paying me to promote her).
Here are a couple of the great images:
1. First and foremost, I signed up/created a team for the Relay for Life event happening here in June! Team Stupid Cancer...here we come! What is Relay for Life?
"At Relay For Life events, communities come together to honor cancer survivors, remember loved ones lost, and fight back. Relay For Life teams camp out overnight and take turns walking or running around a track at a local high school. Events are up to 24 hours long, and because cancer never sleeps, each team is asked to have at least one participant on the track at all times."
I am excited to participate in this event for many reasons:
- Funds raised benefit the American Cancer Society and benefits people fighting all types of cancers.
- This is a great participatory/community building event...and doesn't require quite the commitment of a 3Day (which I totally want to do again some day...just not now).
- I am hoping some of my local cancer peeps will join me in walking the "survivors lap."
- I am hoping you will join my team! Click here to join! Want to find out more? Click on the event's "Learn About Relay" page here.
2. Naps are a part of my life. I could not survive without them. My week looked like this:
Monday: holiday...attempt to clean house...ha, ha, ha, that's funny since it's possible all I did was sit on my ass;
Tuesday: Work 1/2 day, physical therapy;
Wednesday: Work, meetings, plotting world domination through making reading fun, 4 HOUR NAP;
Thursday: Had to take a sick day because I could not move. Not exaggerating AT ALL. More physical therapy, where she mentioned that working full-time is obviously a horrible idea and I should consider going to half-time. Yes honey, I've actually thought about that, trust me. Now, if only I could actually afford to do that.
Friday: Worked all day, came home and took another nap. Wild and crazy week for me!
3. Katy Perry is coming to town and I got tickets. The story about how I finally got a hold of the presale tickets is HILARIOUS, but I did it. I can't explain how much I need to go see this concert, but Katy's music has really gotten me through some DARK times this past year, and I need to be there in person to celebrate! Now, who's coming with me???
4. My brain still does not function like it used to and the only way that I can survive at work is to write a sticky note every time I think of something I need to do/want to do/have to remember/book title/instructions from someone. My desk is currently COVERED with them. Again, not an exaggeration. There's at least 25 of them on there right now. A friend came into my office on Friday and started laughing about this organizational system I have going...it really is a sight to behold.
5. Because I forgot to post the Friday Five on Friday, I can actually show you the family pictures we had taken today rather than just mention that we are going to get them done. A friend volunteered her services back when I was finishing up treatments, and I decided to wait until after Hawaii so that we might all look like we hadn't really holed up inside our house for the past year. It was FREEZING this morning...and EARLY. But it was beautiful out. And she captured some AMAZING shots. I am so grateful for this experience and these images. I know that I say it all the time now and you don't believe me, but life is too short, so you really need to get these things done folks. Take the trips, cross the things off your bucket list, and get some photos taken of you and your family. And I know that my kids wanted to die because it was "so early on a Saturday" but they had a good time (teenage boy even said, "it was actually kinda fun...not nearly as bad as I thought it was going to be"), but I hope that some day they appreciate these photos. I wish I had more of my brother and I together...from when we were kids and today. (But since we both hate being in pictures, that probably explains it. I'm sure my mother just gave up). So thank you Heidi (Heidi King Photography) for your beautiful photos which we will truly treasure. (And she doesn't know I'm plugging her services on the blog, so please don't think she's paying me to promote her).
Here are a couple of the great images:
Friday, January 17, 2014
Friday Five
Five things about my week:
1. I went back to work this week. All five days. I am an idiot. I want to die. Surviving on three hour naps many of the days. I actually went in late Thursday because I could not get out of bed. Seriously, I physically could not move. By the time I got home today I hated everyone and everything. I am not a happy camper right now. THANK GOD for a 3 day weekend so I can rest and regroup for next week. Also, I would say that there are maybe 10 people in the building who actually even knew I was there all week, so my plan to hide is working. I will definitely have to continue this next week because I am not ready to be inundated with everything.
2. The most frequently asked question is: How do you feel?
If you asked this question of me today, I would say, EXHAUSTED and HOMICIDAL. But I'm pretty sure what you mean to ask is, in general, how am I doing? So, the answer to that question is, yes, I do look much healthier than I did. (That's mostly thanks to the sunshine in Hawaii and the tiny amount of tan I have. Oh, and my awesome hair). I would say on a day to day basis, not taking into account the lymphedema (see #3), I do feel better than I have in a very long time. On your scale of 10, I am probably a 4, on my scale of 10, I'm probably a 6. I don't ever see a day where I will be a 10 again in my life, but I am making progress and not really concerned that I'm not feeling a 10. I have learned to adjust to the "new normal" (which are actually two words I now hate). I am surviving, and that's what's important. Still very tired all the time though. Please be patient with me.
2a. MAJOR BONUS POINTS to the husband who came home with ice cream bars on Thursday because he somehow sensed I was on the verge of killing people. DEFINITELY helped me keep my sanity. And now I'm remembering that there might be a cupcake Groupon we have to spend. I think I will need those to get through this week.
3. Finally started physical therapy this week for the lymphedema. Which has really gotten bad this week and hurts like crazy right now. Here are all the fun things that I've learned about that:
1. I went back to work this week. All five days. I am an idiot. I want to die. Surviving on three hour naps many of the days. I actually went in late Thursday because I could not get out of bed. Seriously, I physically could not move. By the time I got home today I hated everyone and everything. I am not a happy camper right now. THANK GOD for a 3 day weekend so I can rest and regroup for next week. Also, I would say that there are maybe 10 people in the building who actually even knew I was there all week, so my plan to hide is working. I will definitely have to continue this next week because I am not ready to be inundated with everything.
2. The most frequently asked question is: How do you feel?
If you asked this question of me today, I would say, EXHAUSTED and HOMICIDAL. But I'm pretty sure what you mean to ask is, in general, how am I doing? So, the answer to that question is, yes, I do look much healthier than I did. (That's mostly thanks to the sunshine in Hawaii and the tiny amount of tan I have. Oh, and my awesome hair). I would say on a day to day basis, not taking into account the lymphedema (see #3), I do feel better than I have in a very long time. On your scale of 10, I am probably a 4, on my scale of 10, I'm probably a 6. I don't ever see a day where I will be a 10 again in my life, but I am making progress and not really concerned that I'm not feeling a 10. I have learned to adjust to the "new normal" (which are actually two words I now hate). I am surviving, and that's what's important. Still very tired all the time though. Please be patient with me.
2a. MAJOR BONUS POINTS to the husband who came home with ice cream bars on Thursday because he somehow sensed I was on the verge of killing people. DEFINITELY helped me keep my sanity. And now I'm remembering that there might be a cupcake Groupon we have to spend. I think I will need those to get through this week.
3. Finally started physical therapy this week for the lymphedema. Which has really gotten bad this week and hurts like crazy right now. Here are all the fun things that I've learned about that:
- ALL the times over the past year plus that I've complained about pain in my shoulder, shoulder blade, back, arm, and around my scar can probably all be attributed now to lymphedema that no one recognized before. UGH! I should have started this therapy LONG ago.
- The yoga, push-ups, and many of the things I have been doing lately to get back into shape are actually making it worse. WHOOPS! No more exercises where all your weight is supported by your arms.
- Also, not allowed to lift anything over 8 pounds. WHOOPS #2. I did not even mention all the heavy lifting I have been doing.
- Why did it get worse in Vegas and better in Hawaii? The plane ride to Vegas aggravated it which is why it started 3 days after we landed there. And then irritated again by the plane ride home. It got better in Hawaii (not worse) because I was drinking a TON of water and I was NOT STRESSED. And it got worse 3 days after we arrived home because of the plane ride. And it's possible I'm not drinking nearly enough water here.
- I'm not supposed to be taking long, hot showers. YIKES! How the hell am I supposed to motivate myself to get out of bed now?!?!
- I'm also not supposed to be doing dishes, cleaning bathrooms, or being around anyone or anything that can give me an infection (sickly middle school children??). While this sounds lovely, it is completely impractical so I just nod my head whenever she mentions these things.
4. Very excited for several things which have fallen into place this week. Will keep you guessing for now. The only things that are getting me through right now.
5. Workouts are WAY OFF COURSE right now. Will be fixing this starting tomorrow! Or maybe Sunday. Monday at the latest. HONEST! Clearly I need people to get me moving as I am incapable to getting motivated by myself. So, if you ever want to go walking, HOLLER!
Friday, January 10, 2014
Friday Five
This week's Friday Five:
1. So, the lymphedema that had gotten better in Hawaii started flaring up again on Wednesday. UGH! This is definitely a sign from God, I think, that I need to not live here! I will discuss this at physical therapy next week.
2. I am DREADING going back to work on Monday. Please do not ask what has possessed me to do such a crazy thing. Keith and I have an agreement and part of it involves my going back to work. UGH! I have told almost NO ONE that I will be back in the building so that I can spend at least the first week (or two...or more...) holed up in my office trying to get back into the swing of things. We will see how long it takes the "secret" to get out.
3. We are getting family portraits taken this weekend. For the first time since the girl child was a baby. I might be the only one excited about this prospect. Here is a preview of what we will be wearing. Stay tuned for more pics after the shoot!
1. So, the lymphedema that had gotten better in Hawaii started flaring up again on Wednesday. UGH! This is definitely a sign from God, I think, that I need to not live here! I will discuss this at physical therapy next week.
2. I am DREADING going back to work on Monday. Please do not ask what has possessed me to do such a crazy thing. Keith and I have an agreement and part of it involves my going back to work. UGH! I have told almost NO ONE that I will be back in the building so that I can spend at least the first week (or two...or more...) holed up in my office trying to get back into the swing of things. We will see how long it takes the "secret" to get out.
3. We are getting family portraits taken this weekend. For the first time since the girl child was a baby. I might be the only one excited about this prospect. Here is a preview of what we will be wearing. Stay tuned for more pics after the shoot!
4. The well-intentioned workouts which got off to a rip-roaring start in Hawaii have disappeared. So hard to be back here, and cold, and trying to get back into the swing of school and activities and laundry...blah, blah, blah. Must. Do. Better. Next week, I promise. I should start a countdown ticker until the sprint triathlon I want to do. That should scare me into getting motivated.
5. A whole week without a doctor's appointment. Gosh, what will I do with myself?! Alas, this will be the only week like that. I start physical therapy next week (two times/week) and PTSD therapy the last week of January (who knows how many days/week that will be...hopefully only one). I think my car can definitely drive itself to the hospital now. Will there ever come a time when I won't be having to set alerts on my phone for doctor's appointments?????
Friday, January 3, 2014
Friday Five
So, I thought that I would start a Friday Five segment each week to keep you updated on what's going on with me each week. I'm hoping to include the good, the bad, and the ugly each week.
Cancer treatment is the gift that just keeps giving, long after you (finally) get a clean scan, and I think that it's important to let anyone that might have to go through what I went through know that.
So, here's my first Friday Five, from Hawaii!
1. I have decided to seriously consider taking the open housekeeping position available at our resort so that I can stay here in Hawaii. I'm actually not kidding. The thought of going home and going back to work next week terrifies me.
2. This has been an amazing vacation! A. MAZE. ING. Please, let me reiterate to you...life is too short folks. Please, please, please take time to stop and enjoy life...with your loved ones...in places that you want to visit. Do not wait to start checking things off that bucket list!
3. The massive pain that I've been feeling since before Thanksgiving (which has since been diagnosed as lymphedema) has actually disappeared while we've been here in Hawaii. I think that when I start physical therapy in a couple of weeks I will have to mention this and see if I can get a prescription to move here! Sounds like a plan to me.
4. My personal trainer (ie: the friend who has promised to whip me into shape so that I can compete in the Iron Girl sprint triathlon in August) is actually on vacation here in Hawaii also. This is awesome...and a little frightening because she knows how to find me and has been texting me workouts. Yikes! Time to get into shape! Today I took the first baby steps toward getting healthy again. See the photo with my workout partners for the day (teenage boy was still asleep in the room) and our reward (view) at the turnaround point. So worth it!
5. Along the lines of "life is too short," Keith and I have started making serious plans for the future that get us to where we truly want to be. And it's a future that is not too far away. I can see the light at the end of the tunnel...
Cancer treatment is the gift that just keeps giving, long after you (finally) get a clean scan, and I think that it's important to let anyone that might have to go through what I went through know that.
So, here's my first Friday Five, from Hawaii!
1. I have decided to seriously consider taking the open housekeeping position available at our resort so that I can stay here in Hawaii. I'm actually not kidding. The thought of going home and going back to work next week terrifies me.
2. This has been an amazing vacation! A. MAZE. ING. Please, let me reiterate to you...life is too short folks. Please, please, please take time to stop and enjoy life...with your loved ones...in places that you want to visit. Do not wait to start checking things off that bucket list!
3. The massive pain that I've been feeling since before Thanksgiving (which has since been diagnosed as lymphedema) has actually disappeared while we've been here in Hawaii. I think that when I start physical therapy in a couple of weeks I will have to mention this and see if I can get a prescription to move here! Sounds like a plan to me.
5. Along the lines of "life is too short," Keith and I have started making serious plans for the future that get us to where we truly want to be. And it's a future that is not too far away. I can see the light at the end of the tunnel...
Thursday, November 28, 2013
In Which I am Thankful...To Be Here
Continuing the gratitude posts today with some quick thoughts on how much difference one year can make.
Last Thanksgiving, we were in Las Vegas (as usual) to celebrate with family. But there was nothing usual about that trip. Don't get me wrong, I was grateful to be there...grateful that I had forced the doctors into letting me go (or maybe I forgot to mention that I was going??), grateful for my dad who paid for the airline ticket so I wouldn't have to sit in the car for 17 hours each way while trying to heal from a 2nd surgery, grateful for family that was there and especially for my "adopted" family that was able to join us.
But, in the back of my mind, my thoughts were swirling. What if this is the last vacation that we take together? I should be making the most of this vacation, but how? I was making an inventory of all the things I was going to miss in my children's lives. What if the treatments don't work? What is going to happen when I start chemo in a couple of weeks? What if the scans never come back clean? (They still haven't...fingers crossed for the upcoming one in December). What's going to happen to my kids? My family? Me????
And to top it all off, I was exhausted during this vacation. I napped quite a bit, I couldn't walk everywhere like I thought. I hadn't even started treatments (other than some surgeries) and already I was feeling the effects of this angry cancer in my body. (Little did I know that this exhaustion was nothing to what I feel on a daily basis now, but at the time, I really did feel "sick." And maybe it was simply because doctors had put that "C" word in my head).
Fast forward to this Thanksgiving. I'm back here, in Vegas with the family. We are ENJOYING every minute of this trip. Food, shows, the gorgeous penthouse we were upgraded to. ENJOYING. EVERY. MINUTE. (This is the view from the "reading room").
And that's what I'm thankful for today...that I am here. That the HORRIBLE last year-plus that I have endured has kept me alive to enjoy another Thanksgiving. That has me looking forward three weeks when we will be off to Hawaii for a return to our annual Christmas vacation, which I have missed desperately throughout all of this.
I am grateful for the doctors/surgeons that I LOVE and that have taken such good care of me. The nurses that laughed with me. The receptionists that always knew me by name and commiserated with me about the teenage boy. My favorite pharmacy gal Megan who literally saved my sanity.
I am grateful that I trusted these people enough to let them do almost anything they wanted to do to my body. And I'm grateful that "Bring. It. On." is actually a good attitude to have and that it served me well.
I am grateful that I survived it ALL. Everything they threw at me.
And as I head out to enjoy yet another amazing meal in Vegas, I will leave you with a thought that I stole from one of my favorite author's Facebook posts this morning: I am grateful for the resilience that comes from having scars!
Last Thanksgiving, we were in Las Vegas (as usual) to celebrate with family. But there was nothing usual about that trip. Don't get me wrong, I was grateful to be there...grateful that I had forced the doctors into letting me go (or maybe I forgot to mention that I was going??), grateful for my dad who paid for the airline ticket so I wouldn't have to sit in the car for 17 hours each way while trying to heal from a 2nd surgery, grateful for family that was there and especially for my "adopted" family that was able to join us.
But, in the back of my mind, my thoughts were swirling. What if this is the last vacation that we take together? I should be making the most of this vacation, but how? I was making an inventory of all the things I was going to miss in my children's lives. What if the treatments don't work? What is going to happen when I start chemo in a couple of weeks? What if the scans never come back clean? (They still haven't...fingers crossed for the upcoming one in December). What's going to happen to my kids? My family? Me????
And to top it all off, I was exhausted during this vacation. I napped quite a bit, I couldn't walk everywhere like I thought. I hadn't even started treatments (other than some surgeries) and already I was feeling the effects of this angry cancer in my body. (Little did I know that this exhaustion was nothing to what I feel on a daily basis now, but at the time, I really did feel "sick." And maybe it was simply because doctors had put that "C" word in my head).
Fast forward to this Thanksgiving. I'm back here, in Vegas with the family. We are ENJOYING every minute of this trip. Food, shows, the gorgeous penthouse we were upgraded to. ENJOYING. EVERY. MINUTE. (This is the view from the "reading room").And that's what I'm thankful for today...that I am here. That the HORRIBLE last year-plus that I have endured has kept me alive to enjoy another Thanksgiving. That has me looking forward three weeks when we will be off to Hawaii for a return to our annual Christmas vacation, which I have missed desperately throughout all of this.
I am grateful for the doctors/surgeons that I LOVE and that have taken such good care of me. The nurses that laughed with me. The receptionists that always knew me by name and commiserated with me about the teenage boy. My favorite pharmacy gal Megan who literally saved my sanity.
I am grateful that I trusted these people enough to let them do almost anything they wanted to do to my body. And I'm grateful that "Bring. It. On." is actually a good attitude to have and that it served me well.
I am grateful that I survived it ALL. Everything they threw at me.
And as I head out to enjoy yet another amazing meal in Vegas, I will leave you with a thought that I stole from one of my favorite author's Facebook posts this morning: I am grateful for the resilience that comes from having scars!
Wednesday, November 27, 2013
In Which I am Thankful For...Being Taken Care of
Continuing my posts of gratitude today. I thought I would continue with some additional ways in which friends and family have taken care of us during this cancer journey.
Again, in no particular order, I will forever be grateful for:
Again, just some thoughts that come to my chemo-addled brain right now. So many people taking care of us, so little time to say thanks. Stay tuned this week for more!
Again, in no particular order, I will forever be grateful for:
- All my Evergreen (and Lake Washington School District) staff that shared their sick leave with me. I ran out of my own sick leave in December of 2012. On the advice of all my doctors (and my own common sense), it was necessary to stay out of the building through June, 2013, and again this fall during radiation and after my recent surgery. (Let's be honest, middle schools are a hotbed of germs, and you know what? There's no prize at the end for working too hard and running myself down). I can never return the favor to these people, nor can I express my level of gratitude for the opportunity to get healthy while not worrying about losing my benefits.
- All of those friends who volunteered to drive me to radiation every day, and to those random doctor appointments/scans when Keith was out of town. You made the process so much less lonely and it was great to have a friendly face there.
- My daughter's 5th grade year went by in a blur. There are so many families who made sure that her last year of elementary school was smooth and enjoyable and that she could participate in all the activities that she wanted to. I could do an entire post on ALL the things she did and places she went and the people at the heart of taking care of her. It truly does take a village, and some day I'm going to owe so many sleepovers and favors! I tear up every time I think about this amazing group of people.
- My friend who put together the care calendar so friends/family/neighbors/ could sign up to deliver us groceries as well as meals for the family several times a week. And to EVERYONE that did sign up. This small gesture of love relieved so much stress in our lives. Some of you signed up multiple times! A certain neighbor saved me every chemo week with homemade soup just for me! The friends from far away who called in pizza delivery. And those that sent gift cards instead so we could use as we needed. Especially the Subway cards...which I made Keith pick up for me every week during chemo.
- Several people deserve love for organizing fundraisers to support me throughout this process. Online and in person fundraisers were held, and the money raised was MUCH NEEDED to make a dent in the rising tide of medical bills. The students who attended and performed, their families who donated, friends, family, my dad's coworkers, random community members...everyone who donated in person or anonymously. Cannot express my gratitude enough!
- Our soccer family for seeing us through this process and always being supportive! It's the teenage boy's last year with this team and I will be sad to not see these people every week.
- The friends at work who organized the students into making a GIANT book of love, full of quotes, pictures, drawings, reading recommendations, poems, handwritten notes, and just a lot of love from my Evergreen family. It was completed and presented at just the right time last spring to keep me going during a pretty dark time.
- The wonderful friends who made sure we had a place to be last Christmas Eve. No one had any idea how I'd be right after that first round of chemo (other than REALLY depressed about not being in Hawaii), but they took care of all us and made the entire evening easy and full of love. I'd offer to return the favor this year, but they'll have to come to Hawaii to take me up on it.
- My dear friend who took charge of making sure Pantry Packs continued running smoothly. I will never be able to repay the favor for how she jumped in and made many things happen. Tearing up again...
Again, just some thoughts that come to my chemo-addled brain right now. So many people taking care of us, so little time to say thanks. Stay tuned this week for more!
Posted with BlogsyTuesday, November 26, 2013
In Which I am Thankful For...Friendship
In the spirit of Thanksgiving, I thought that I would take this week to offer up a few glimpses into all that I am grateful for this year.
Please don't think that this list is exhaustive or all-inclusive by any means, but just some highlights of my gratitude over the past year...and they are not in order of importance, just how my chemo-addled brain remembers them.
I thought that I'd start it off by expressing my gratitude for friends far and wide, in every meaning of the word (friend, neighbor, coworker, etc.) for these gestures of friendship:
Forever grateful...
Please don't think that this list is exhaustive or all-inclusive by any means, but just some highlights of my gratitude over the past year...and they are not in order of importance, just how my chemo-addled brain remembers them.
I thought that I'd start it off by expressing my gratitude for friends far and wide, in every meaning of the word (friend, neighbor, coworker, etc.) for these gestures of friendship:
- I recently came across the mountain of cards and letters I received throughout this process. And I wish I'd had more time to read through them again and again (I was supposed to be cleaning and packing for vacation). There were funny ones, touching ones, notes written from the heart...all of them arrived at just the right moment to keep me going. Seriously, if you know someone going through any kind of health crisis, drop them a card, or two, or ten, in the mail. It does make a difference. Fighting cancer is an isolating experience in many ways, and even a quick note can bridge that gap and make a person feel loved.
- My librarian and publisher friends far and wide that kept me in goody boxes and books. I've heard rumors of an organized roster of who took care of me when, and I'm sure I know who was in charge, but these meant the world to me during my darkest days of chemo.
- Anyone who contributed to the angel tree or pumpkins on my porch (see previous posts on each of those events). Even though we don't do Christmas decorations in the Yusko household, I'm considering breaking out a tree just so I can hang the angels up again this year...and every year hereafter.
- Someone, or several someones, ordered me subscriptions to three or four different magazines (gratefully not food-related ones). A much-needed and appreciated distraction.
- Blankets, hats, and scarves made and/or given with love.
- Friends who motivated me to get out of the house by promising me lunch, or coffee, or drinks. And the friends who helped me get out of the house and get walking. Helping me just forget about being at the hospital every other day and allowing me to pretend to be normal for a little while. Definitely helped me keep my sanity some days! And for those that were there to raise a drink to small victories.
- Discovering friends that have been through and survived major illnesses of their own, who can offer support when no one else can. Because no one else really understands.
- Think what you want about Facebook, it has been a godsend during this process. No where else can you get immediate feedback in the form of: messages of support, commiseration to your crappy day, words of wisdom, and posts to make you laugh. You don't actually get tired of any of these things. Facebook is also good for allowing friends from far and wide, new and old, to connect. It's been great to be the recipient of this love.
Now, before you think I've forgotten all the other things that people did for us, never fear. I decided to split this post into two parts, so you'll have to stay tuned tomorrow for more...
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, November 7, 2013
What Not To Do at Surgery...
Surgery on Monday was an adventure. Here are just some of the highlights:
We were required to be there at 6:45am for check-in. I'm not sure that surgery was scheduled until 9am, so this always makes the day even better...because I "love" getting up early.
For future reference, it is not advisable to do any of the following things that I did:
(1) Because I feel like I'm an "expert" at this whole surgery thing, and this trip to the hospital was for my 5th surgery, I dodged all of their pre-op phone calls asking about my height, weight, allergies, overall health, etc. And where they also give me the "don't eat after midnight" speech. Yeah, whatever. If you don't have all my medical history in front of you by this point, I'm kinda scared for you. And if anything is glaringly absent, I know that I'll be required to answer your questions all over in the morning anyway, so those calls went straight to ignore. (Yes, I've actually memorized which phone number each unit of the hospital calls me from).
(2) When checking in, it's probably a good thing to know which doctor is performing the surgery. Turns out the staff didn't like the "Hmmm, I'm actually not sure" answer. Bonus points to Keith for knowing his name "starts with an I."
(3) When checking in, part 2...also good to be able to communicate what type of surgery you are having. "I'm just here for the ride" did not go over well as an answer to that question. But did accurately convey my attitude.
(4) They also don't find it funny if you cannot find your insurance card...EVEN THOUGH YOU'VE BEEN TO THE SAME HOSPITAL AT LEAST 300 TIMES IN THE LAST YEAR FOR A VARIETY OF TREATMENTS AND TESTS AND APPOINTMENTS, AND HANDED YOUR CARD TO SOMEONE AT LEAST THAT MANY TIMES, AND YOU DARE TO ASK, "Don't you have it on file???"
I'm pretty sure to pay me back for these outrages, and my laissez faire attitude, karma got me back by way of a nurse who could not put in my IV. Two blown veins (see picture below) and another nurse later, and the third time was the charm. But wow, did that process ever hurt! And took a really long time.
Again, I don't remember much about the process. I'm sure that I was wheeled into the room somewhere around 9am. I have a vague recollection of being put on the coldest pillow of ice ever, but that's about it. I think I woke up in recovery at 10:15am, so maybe that 9am time can't be right. And, quite honestly, I was out the door by 10:45am, pain meds in hand. (At least I do always know to say "no" when asked, "Are you going to be staying overnight?").
How I've felt the past few days? Like I was stabbed in the stomach with a steak knife. Oh wait, I was.
I have three lovely 2 inch scars in my abdomen now...one through my belly button. These feel awesome and make doing anything fun. Did not realize how much I used my core muscles before now, but they sure would come in handy for things like sitting up, standing, coughing...breathing. Teenage boy was making me laugh last night and it hurt so bad. Couldn't yell at him to stop. Or beat him up. And he knows it!
This anesthesiologist decided to stick a tube down my throat while I was under, and I have to say, I think he JABBED it down my throat and RIPPED it back out because I still have a sore throat. Not the gentlest of touches to say the least.
Another fun feature of the surgery was that they filled my abdomen with gas in order to get around the intestines to all the parts that needed removing. This gas does not all disappear right away. It makes your stomach (which again, feels like it was stabbed with a steak knife) bloated, and causes unusual pains in your shoulder. (Don't ask...I'll explain it to you in person). Super fun! Kinda feels like I just had a baby via C-section.
Tonight is day 3, post-op. I can walk around slowly, but not standing upright; I can roll myself out of bed or into a sitting position, albeit very precariously; coughing, laughing, and taking deep breaths are killing me; and absolutely NO lifting anything.
Doctor said that I would probably be "back to normal" in about a week. That's funny, and considering said doctor is a man I'm kind of not surprised by this attitude. I couldn't even imagine going back to work on Monday. How's a person supposed to put on a seat belt???!!!
We were required to be there at 6:45am for check-in. I'm not sure that surgery was scheduled until 9am, so this always makes the day even better...because I "love" getting up early.
For future reference, it is not advisable to do any of the following things that I did:
(1) Because I feel like I'm an "expert" at this whole surgery thing, and this trip to the hospital was for my 5th surgery, I dodged all of their pre-op phone calls asking about my height, weight, allergies, overall health, etc. And where they also give me the "don't eat after midnight" speech. Yeah, whatever. If you don't have all my medical history in front of you by this point, I'm kinda scared for you. And if anything is glaringly absent, I know that I'll be required to answer your questions all over in the morning anyway, so those calls went straight to ignore. (Yes, I've actually memorized which phone number each unit of the hospital calls me from).
(2) When checking in, it's probably a good thing to know which doctor is performing the surgery. Turns out the staff didn't like the "Hmmm, I'm actually not sure" answer. Bonus points to Keith for knowing his name "starts with an I."
(3) When checking in, part 2...also good to be able to communicate what type of surgery you are having. "I'm just here for the ride" did not go over well as an answer to that question. But did accurately convey my attitude.
(4) They also don't find it funny if you cannot find your insurance card...EVEN THOUGH YOU'VE BEEN TO THE SAME HOSPITAL AT LEAST 300 TIMES IN THE LAST YEAR FOR A VARIETY OF TREATMENTS AND TESTS AND APPOINTMENTS, AND HANDED YOUR CARD TO SOMEONE AT LEAST THAT MANY TIMES, AND YOU DARE TO ASK, "Don't you have it on file???"
I'm pretty sure to pay me back for these outrages, and my laissez faire attitude, karma got me back by way of a nurse who could not put in my IV. Two blown veins (see picture below) and another nurse later, and the third time was the charm. But wow, did that process ever hurt! And took a really long time.
How I've felt the past few days? Like I was stabbed in the stomach with a steak knife. Oh wait, I was.
I have three lovely 2 inch scars in my abdomen now...one through my belly button. These feel awesome and make doing anything fun. Did not realize how much I used my core muscles before now, but they sure would come in handy for things like sitting up, standing, coughing...breathing. Teenage boy was making me laugh last night and it hurt so bad. Couldn't yell at him to stop. Or beat him up. And he knows it!
This anesthesiologist decided to stick a tube down my throat while I was under, and I have to say, I think he JABBED it down my throat and RIPPED it back out because I still have a sore throat. Not the gentlest of touches to say the least.
Another fun feature of the surgery was that they filled my abdomen with gas in order to get around the intestines to all the parts that needed removing. This gas does not all disappear right away. It makes your stomach (which again, feels like it was stabbed with a steak knife) bloated, and causes unusual pains in your shoulder. (Don't ask...I'll explain it to you in person). Super fun! Kinda feels like I just had a baby via C-section.
Tonight is day 3, post-op. I can walk around slowly, but not standing upright; I can roll myself out of bed or into a sitting position, albeit very precariously; coughing, laughing, and taking deep breaths are killing me; and absolutely NO lifting anything.
Doctor said that I would probably be "back to normal" in about a week. That's funny, and considering said doctor is a man I'm kind of not surprised by this attitude. I couldn't even imagine going back to work on Monday. How's a person supposed to put on a seat belt???!!!
Thursday, August 22, 2013
Here's What's Up
Tired of saying "radiation, radiation, radiation" and repeating on an endless loop, I thought that I would just jot down some notes about what it's been like to be me the past few weeks.
(1) I need MUSIC MONDAY suggestions ASAP! Comment here...early and often...please!
(2) We did the biggest back-to-school power-shop EVER over the weekend. Because I cannot be far away from my favorite radiation machine Monday through Friday, we had to cancel the annual Oregon coast/beach camping/shopping extravaganza. Instead, it became a blitzkrieg event, where we powered through every store possible in the shortest amount of time, barely stopping to eat. While it was exhausting (no, I'm never going to do this again), it was actually really fun. At dinner on Saturday night (at like 9:30pm because we just couldn't stop shopping) the four of us LAUGHED. A LOT. AT EVERYTHING. And I don't even remember most of what was so funny (except I remember some of it had to do with the fact that I'm not sure English is my children's first language. Did teenage boy really ask, what's a verb?). But it just felt good to laugh.
(3) I went in to work on Monday (because I'm dumb...I know). It was just for a couple of hours, and I didn't really do anything but stare and feel overwhelmed by the amount of work to be done before the start of school (somehow my library became a dumping ground over the summer). And how was I rewarded for this? By getting sick. So. Very. Sick. Damn middle school germs that obviously linger FOREVER. I feel like complete crap now. I get it...compromised immunity + school germs = sick. (Of course, I went up there again today. I figured, what the heck, I'm already sick. I know. I told you I was dumb).
(4) Before I got sick and wanted to kill people because of this awesome sore throat and headache, I was starting to feel fatigued from radiation. I had a good 3 hour nap last Friday. And another one a few days before that. I haven't read a book in 4 days because I can't stay awake.
(5) I hate my hair. Everyone loves it, and I'm not saying that it's horrible. But the color is all wrong and the curls are driving me to drink. When I look in the mirror I do not see myself. I have decided to keep it short for awhile. And wear the Katy Perry wig for school pictures for the rest of my life.
(6) Chemo is the gift that just keeps giving. I am starting to make plans for the fall and eventually returning to work. Every day I think about what I can no longer do and how it will impact me going back to work. I've decided to make this a post all on it's own...stay tuned.
(7) Before I caught the plague, I was able to get out and exercise a little bit. I was doing pretty good and trying to get out every day. Until about a week ago. And then I got tired. And then I got sick. Hoping to pick it back up again by the weekend. However, last 10 pounds still not coming off and the clothes still don't fit. Super frustrating.
(8) Really missed not going ANYWHERE this summer. Radiation puts a crimp in your social calendar, that's for sure. I feel like I deserve a vacation when this is all done!
(9) To end on a positive note, my former student Nolan has reached his fundraising goal and will now be able to walk on the 3Day (here in Seattle in September...just a few weeks from now). His mom Deb, and another friend Julia also reached their goals, so I'm hoping to be able to get out and cheer them on. Who's with me?? Thanks to EVERY ONE OF YOU that donated to Nolan (or anyone else that is participating in the walk). It is terrific to see so many of my friends on his "supporters" roll call! And thanks to all of you that are supporting anyone participating in events that raise money for cancer causes...Obliteride, Relay for Life, etc. And those of you walking/running/riding for a cure. (Check out one of my students who walked this spring in a Relay for Life event...go Abbey!)
(8) Really missed not going ANYWHERE this summer. Radiation puts a crimp in your social calendar, that's for sure. I feel like I deserve a vacation when this is all done!
(9) To end on a positive note, my former student Nolan has reached his fundraising goal and will now be able to walk on the 3Day (here in Seattle in September...just a few weeks from now). His mom Deb, and another friend Julia also reached their goals, so I'm hoping to be able to get out and cheer them on. Who's with me?? Thanks to EVERY ONE OF YOU that donated to Nolan (or anyone else that is participating in the walk). It is terrific to see so many of my friends on his "supporters" roll call! And thanks to all of you that are supporting anyone participating in events that raise money for cancer causes...Obliteride, Relay for Life, etc. And those of you walking/running/riding for a cure. (Check out one of my students who walked this spring in a Relay for Life event...go Abbey!)
Subscribe to:
Posts (Atom)