I know that she doesn't read this blog, but someday I hope that she finds this letter. Dear AJ, It has been a tough couple of years in our house, and I'm sorry that you had to go through it. I wanted to say that I'm so immensely proud of how you survived it better than any of us. I'm sorry that I missed so many of your activities, and that my being sick meant dad couldn't be there either for the field trips, camps, and all the fun that 5th grade and the beginning of middle school had to offer. I hope you know how lucky you are that you have some AMAZING friends and their families who scooped you up, took you in, and made sure that you could do all the things you wanted to these last couple of years. You might not realize it now, but these people took such good care of you. I will never be able to thank them enough for making it so your life could be as normal as possible. I'm sorry that I am tired...and grumpy...and seem like a crazy person sometimes. I'm trying my best, but it's hard. I'm sorry that I'm not the same mom I was before cancer. And I'm sorry that things change. But, maybe that's a good thing too. Thank you for being you. For desperately wanting to take care of me. And for always trying to help. It must be so hard to be the youngest in the family and have everyone tell you, "don't worry about it," when I'm sure that you were worried. Thank you for sock monkey. Who saved the day more than once. Really and truly...I believe! Thank you for your kind heart that always wants to solve all the world's problems with cupcakes. I actually think that if given a big enough kitchen, and enough time, you probably could solve many world crises through cupcakes. Baking for all my caregivers was such an amazing gift that you gave people. Don't ever lose that spirit. World domination with baked goods cannot be a bad thing. Thank you for being worried about everyone in the family, not just me. Yes, it was hard to live with a big brother who was not having his finest moments either, and I'm sure there were times you thought your family was coming apart. Honey, I promise you, I thought the same thing. But we are all hoping for better times ahead. Thank you for being the child that is ready for change...and is excited for new adventures and experiences. I love that you are the one person in the family that I can make plans about what our life will be like in the next couple of years. I know your mom's crazy ideas for getting rid of everything and going on a life-changing adventure are the most disruptive to you. But I appreciate that you're up for something new and willing to come along for the ride. You and I are going to write that book someday, and you are going to help so many kids in the same situation. I hope that someday you are able to look back on this time in our lives and realize just how strong you are...and how caring...and how much you make a difference. And what a survivor you are too. Don't forget: Always be happy. Always. Nothing is more important than love. Live your dreams. And dream big. Have fun. Enjoy life. I love you. Always. Love, Mom
I'm really and truly doing this, folks. And it's getting closer and closer. So, if you've ever thought about joining, NOW is the time! Here's the link to join my team. Contact me with any questions that you have. Fundraising is minimal...they ask that you raise $100 or more, but not a requirement. The registration fee is only $10. Yes, it is an overnight event. But you don't have to be there the entire time. Or even walking the entire time. The goal is for every team to have someone (or more than one person) on the track every hour of the event. But the entire team doesn't have to be out there at once. Yes, some of the teams are going to be wild and crazy and probably have costumes and who knows what else. I don't actually see us being that, but you are more than welcome to help us find our slightly crazy side. It's supposed to be a fun event, that brings the community together, to raise funds for the American Cancer Society. Cancer survivors take the first lap, and it's a pretty cool experience. JOIN ME!
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!
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...
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.
...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.
...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.
Okay, I must interrupt the previously scheduled Music Monday for today to include this amazing Oscar performance by Pink. AMAZING! And what Whoopi Goldberg said about watching the Wizard of Oz as a kid? Yep, that's my family. And if they keep pulling the performance for "copyright" issues, just Google it until you can find a clip. I'm including several versions here because throughout the day they keep getting taken down by YouTube.
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.
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.
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?
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...
Alright, alright, I know it's not really Friday. I am usually SO exhausted on Friday evening that I just barely manage to stay awake long enough to eat dinner. But I like the alliteration, so Friday Five it will remain...even if it really is Sunday. Here's this week in a nutshell: 1) Another dear friend started chemo this week. I am grateful to have been through this process so that I can answer any and all questions that she has, but her having cancer really makes me angry. This cancer thing is complete crap folks. COMPLETE. CRAP. As in, it's high time we started spending large sums of money on RESEARCH. Not "cancer awareness" but actual RESEARCH. (I will be ranting on this topic another day...I have lots to say). Grrrr. 2) I got an adorable hand-drawn "thank you" POSTER from a student. She was really grateful for the presentation that I gave her class about good books to read. WOW! If that doesn't put a smile on your face, nothing will! 3) The Relay for Life people changed the date, and then changed it back to the original one. There was a flurry of completely unorganized emails from them for about a week. All is settled now, and apologies abound, but they were driving me crazy for awhile. If I didn't want to participate in this SO BADLY, I'd be tempted to try again next year. But all is good, and there's still some spots on the team if you're considering joining!! And the date really is June 7, 2014. And they promise not to change it again. 4) The daughter talked me into doing the Hot Chocolate 5K next Sunday...as in the one coming up in 7 days. Seemed like a good idea at the time. Now it seems like the CRAZIEST idea I have EVER had. Oh, we will be walking this 5K, there is no doubt of that. But we will finish! 5) This week, every book I read was about some kid with cancer (or other life-threatening illness). Seriously, I did not plan this, and didn't really even know what any of them were about when I opened them up. But I definitely cried while reading one of them, and had some flashbacks while reading all of them. And Keith laughed at me for continuing to read them all since I was clearly bringing the punishment on myself. It was REALLY hard to read them, but I also couldn't stop. It's like a trainwreck...I couldn't look away.
Always a fan of U2, I was so grateful that a friend alerted me that the video for their newest song was released this past week. And they'll be on the new Tonight Show tonight. Enjoy! And this is also a reminder to get me your music recommendations!
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...
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!
Today is World Cancer Day! Yeah, I didn't know there was such thing either, but I can get behind this. Purple is the color of cancer survivors (and even if I don't know if I'm supposed to call myself one, I'm gonna run with it). In honor of WCD and cancer survivors everywhere, Chevrolet is making a $1 donation to the American Cancer Society for every Facebook/Twitter profile that is turned purple (up to $1,000,000). Are you on either of these social networking sites??? PLEASE click here to find the link to participate and TURN YOUR PROFILE PURPLE!
Did you see the Chevrolet Super Bowl commercial advertising this? I have had that car ride with Keith before...many times...
I saw a friend post this video on Facebook the other day and thought it would make a good Music Monday! And it's from Despicable Me 2, which is one of our new favorite funny movies here in the Yusko family.
It has been a crazy week here in Seattle with almost everything being Super Bowl-related. It's quite awesome for this sorta Seattle native (I've lived here since I was 10, so that has to count, right?) and self-confessed sports junkie. Very exciting! Go Hawks! Here's the 5 this week: 1. MONDAY SUCKED! TREMENDOUSLY! WORST EXPERIENCE EVER AT A DOCTOR'S OFFICE! And I thought I had been screwed over all the ways possible by the medical profession. I was wrong. Because I posted a cryptic message on Facebook right after it happened which led everyone to thinking that I had received bad news, I will attempt to briefly make a long story short, here goes: I have, all along, been going to the Seattle Cancer Care Alliance facility at Evergreen Hospital. I LOVE everyone there. However, being in desperate need of psychiatric help for my PTSD, I had to schedule an appointment at the SCCA facility on Lake Union as they do not offer those services at Evergreen Hospital. It was my first (and last) time in this office. So many things about the whole experience made me twitch. But the reason I got so irate is really long and convoluted. Had appointment with a doctor there at 1pm. Checked in at 1pm. They page the doctor. Sat down in ENORMOUS waiting room, surrounded by signs that say, "If you haven't been called in 15 minutes after checking in, please check in again." 1:15pm goes by, but I don't want to be that person. 1:30pm: I check in again. And point out that I have to leave at 2:00 in order to pick up my kids from school. They page the doctor again. 1:45pm goes by...now I'm mad. 2:00pm: I go check in again (for the 3rd time). This time however, all I want is a manager to talk to and to make sure that I NEVER get charged for this visit. And to point out that I just took 3 hours off without pay and have nothing to show for it. They go find a manager and page the doctor again. 2:02pm: a very young, and clearly not well-versed in how to deal with patients, gal comes flitting to the desk and says, with a slight giggle, "Oh, Dr. Chen? He's not here today." And then I go crazy! So, the doctor was not even at work today? And people knew this? And no one called me? Canceled my appointment? Told me one of the 3 times I checked in? How long would I have sat there? Does the guy have a 2:00 appointment waiting in the waiting room also? So, the gal they finally send out to talk to me is GREAT. And bursts out into tears with how sad she is for what has happened. And is a cancer survivor herself. Which is a good thing she was the one sent to deal with us because she actually understood my frustration. By the time I get home, I have 3 messages from different people apologizing for the day. One offers to send me a form so I can apply for reimbursement of my time and expenses (never seen that before). We'll see.
Long story, sorry. Cupcakes made everything better. Keith smartly drove directly from this fiasco to the cupcake store. I had 2 for dinner and took a 4 hour nap and the world was bearable again. Seriously folks, probably not best to make the already unstable patient that much more crazy. Just sayin'... 2. I was watching the Grammy's and realized that Cyndi Lauper and I now have the same hair color (or at least VERY close). Wow! Growing up in the Cyndi Lauper era, I have to admit that's a sentence I never thought I'd write. 3. The hospital that was suing us for our minimal outstanding bill ($800...which in the grand scheme of things is minuscule compared to all the $$ that we owe), which they stopped billing us for so how were we supposed to know we hadn't paid it off (but that's a whole other discussion), just garnished my paycheck for $1,300. Awesome. Don't even get me started. Makes me want to become a patient advocate so that others will not get screwed the way we have. 4. It's been a long, hard year for everyone here in the Yusko clan. I try really hard not to diminish all that the rest of the family went through even though my year has been pretty "me" focused. Teenage boy did not have the best year by any stretch of the imagination, and there have been many days that I considered selling him to the highest bidder. But then I realize that he is so much like me...and I appreciate the fact that he can ALWAYS make me laugh. Whatever the situation. I am so glad that no one has lost their sense of humor in this family, especially him. So many times this week I have laughed because of him. Thank you. 5. I could never begin to repay the kindnesses shown to me and my family this past year and a half. NEVER. Can't even imagine trying. So, when a friend posted this "Pay it Forward" Challenge on her Facebook page last week, I jumped at the chance to participate. So, instead of paying it back, I'm going to pay it forward this year! (And since the concept comes, I think, from one of my favorite books, I really love this movement).
Pay-it-Forward initiative: The first five (I'm actually going to do 10) people who comment on this post/Facebook post/email me with "I'm in", will receive a surprise from me at some point in this calendar year - anything from a book, a ticket, a visit, something homegrown or made, a postcard, absolutely any surprise! There will be no warning and it will happen when the mood comes over me and I find something that I believe would suit you and make you happy. These five (10) people must make the same offer in their Facebook status and distribute their own joy. Simply copy this text onto your profile (and again, you only have to do five, but I wanted to do 10). I'm really looking forward to doing this! Cannot wait to see who's in it with me. And a bonus: 6. I hit the "Register Now" button for the Iron Girl Triathlon in August. Yikes! Who's with me??? Who's going to teach me how to swim? Yeah, that's kind of going to be a problem, but one I'm willing to overcome. So real now...no turning back! Here's a video to get me inspired:
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:
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:
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:
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!
Okay, today is the first day back to work in a LOOOOONG time. It is going to be a painful week, I can already tell. I need this song to get me going today... And they obviously haven't done a video for it, that I can find quickly on YouTube anyway. But at least you can hear the song.
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!
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?????
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...
I followed this kid's story while he was sick, and this beautiful song that he wrote when he realized that he was going to die. The song has touched so many people and done many great things (when you download it from iTunes, the money is donated to a fund in his name that is in turn donated to cancer research at the hospital that was treating him).
Zach passed away in May, 2013. This video is a tribute concert from December, 2013 where 5,000 people gathered at the Mall of America to sing his song. Beautiful.