Musings on Cancer-versary VII

It has been a looooong time since I last posted. In fact, it's been years. I've been keeping up with social media and a lot of my thoughts have gone on Facebook over the years. (My library musings are over on my library blog). But I basically abandoned the story of my cancer journey. 

One of the main reasons I stopped posting here was that someone stole my words to pass them off as her own (fake) journey. I'm guessing to take advantage of the kindness of others. So, I made the decision not to give her any more details to take. (Don't worry, I have faith that karma will come back for her if it hasn't already). 

The other big reason I stopped updating here is, well, eventually life moves on. And you pack up and move to a place where no one knows what you going through treatments looks like, and it just doesn't come up in conversation a lot, and you dare to dream that PERHAPS you have gotten through the worst of it. That you might just make it to that magical "5 Year" mark which some think makes you a "survivor."

And then it happens. That 5-year-post-treatment date that once seemed so elusive comes...and goes. And you kind of can't believe it. I hit that mark this past December and other than pausing to reflect as New Year's 2019 rolled in, I didn't say too much about it to anyone, anywhere.

Now, here I am at Cancerversary #7. SEVEN years since I was first diagnosed. And I find myself with a mess of "notes to self" for future blog posts stored up in my phone. Life has sure been a roller coaster but I still believe those things I typed way back on Cancerversary #1 (copied below for your perusal). Apologies in advance for the LONG post that is about to follow, but there's just so many things that I want to say to "update" that first post.

1) WHAT IS A CANCERVERSARY?
And why would you celebrate it?

If this is your first time reading this blog, Cancerversary is the anniversary of the day I was diagnosed: October 9, 2012. After being told for months, "you're so young, it can't possibly be cancer, "this is the day I got "the call." (Read the copied post below to find out about that day). Every October 9th since then, I try to make it a point to pause and reflect on how my life has changed since the diagnosis. And to celebrate this day as a turning point to living the dream. 

It's always been an interesting day for me because October 9th is also a friend's birthday. And every year when Facebook reminds me of both events all I remember is that day when I found out and thinking how I couldn't tell him because I didn't want to ruin his birthday. Yes, we laugh about the things that go through your head when you hear the "C" word.

2) CONNECTING WITH THE PEOPLE WHO KNOW WHAT YOU'VE BEEN THROUGH.

I know that I've shared my story, sometimes in great detail (hence someone being able to steal my posts). I also had a platoon of people taking care of me. PLEASE know that I am NOT saying that you can't empathize with or understand all the things that I'm saying unless you've stared down a cancer diagnosis. But...it's a little bit true. For me, there's strength in connecting with others that have been through the clusterfuck that is cancer. For being able to raise a glass at a reunion with a fellow survivor and you just don't need to say anything because you both know it means, "you understand the bullshit that got us here."  For sharing a hug with another survivor that means "you're here...I'm here..." For sitting with a friend who's been through it all too and you can say, "I hate the meds. I stopped taking them. I don't care." And they GET IT. There's no judgement.

I have a great group of family and friends that supported me through the worst of it, and still do. They are my PEOPLE and I love them. But there are just those people in the group who I will always connect with on a totally different level. I mean, I wish we weren't all in the same club, but it helps to know that they've got your back always. Because FUCK CANCER.

3) THE PEOPLE YOU CAN NEVER REPAY.

There are several people in my life that I always think about on this day, and know that I can never repay them. These are the people that donated SO MUCH SICK LEAVE so that I could stay home for basically an entire school year and focus on healing. There will never be enough words to thank them. You know who you are. 

4) CANCER SUCKS.

Thanks Captain Obvious. But what I really mean is, why the FUCK is this still impacting people we know and love? While I know many of you have battled cancer before me, after me, or are currently in the fight, and you know I LOVE YOU ALL, these are the people specifically on my mind today:
- the VERY first person I told about my diagnosis is currently battling cancer. 
- a former student who is the same age as my own kid was diagnosed a few years ago.
- the one person whose journey I clung to with hope, believing "if they can survive, then I can too" passed away from a recurrence a few years ago and it still hurts.
- a friend who had a blanket made for me (and blessed by her church) for hospital chemo days recently lost her own battle with cancer. I regret being too far away to be as supportive as I could have been; for not digging into storage to find that blanket and send it to her. For thinking that we would have more time. 

5) CANCER SUCKS, part 2.
 
I recently went to my high school reunion. It was great to be there and see the people who knew you when were an awkward, nerdy, teenager with bad 80s hair. But it was loud and chaotic and tough to really sit and talk story with people. But there was one person I got to spend a minute with and I wish I'd said what I really wanted to say, but I was kind of afraid to tear up. We had been friends since 7th grade, but lost touch (except on Facebook) after graduation. And then, when I posted about my diagnosis all those years later, his was one of the first messages of support I received. And it was filled with words like "you're a competitor...a Redmond Mustang through and through...you have friends and prayers coming your way...I know you are tackling this with the same approach I have seen from you many times over." And it just meant so much in the moment. 

When I saw him at the reunion, he gave me a hug and a high 5 and he said, "you did it. You're here." And it means even more now because he gets it. He lost his mother to cancer.   


6) HEALTH CARE BLUES.
Or, what I wouldn't give for a clean scan.
Or, I'd like to get off this roller coaster.

I've been binge-watching Outlander (among other shows) on Netflix and I find myself saying "Jesus H. Roosevelt Christ" quite a bit lately. For anyone that's been playing along on my journey, you know that I have a hate-hate relationship with scans of any kind. I hate them, they never give me a definitive result...I feel like I'm always hoping for a clean scan and end up getting "suspicious" results instead. 

Fast forward to a few weeks ago, when I'm scheduled for my first MRI since hitting that "5 year mark." I could do a whole post on "scan-ticipation". In fact, I probably have. It's stressful to always be thinking, "what if?" Last year's scan was "suspicious" but not "concerning." (ALSO, I HATE ALL THESE WORDS AND DOCTORS SHOULD NOT BE ALLOWED TO USE THEM!). This year's scan was actually suspicious AND concerning enough to warrant a follow-up ultrasound at my "earliest possible convenience." So, that was an awesome long weekend of worrying. BTW, said ultrasound alleviated some of the concerns but now I'm on a watch-and-see-come-back-in-3-months pattern. I just can't seem to get off this roller coaster.

7) AM I DIFFERENT?

In many ways, I'd like to think that I'm not all that different fundamentally. I feel like I've always spoken my mind, at least to the people that know me. But maybe that's not true. Maybe I have changed. But, I don't care...maybe that's the difference.
I have ZERO time in my life for bullshit.
I'm just gonna walk away from crazy.
Take me or leave me, but this is me.
There are lots of "lessons learned" which you can read below. As I'm typing this, I realize that even I'm not living up to my mantras. I let my passport expire. I haven't done any of the big trips I wanted to do. I have crazy in my life. I'm not happy all the time. But I'm refocusing. Starting with that passport renewal!

And you know what? I can see the ocean from my bedroom. My baby is graduating from high school. And I'm a grandma. So life isn't all bad.


8) THERE ARE NO GUARANTEES!

I hope that if you've read this far you understand that. We may or may not get a tomorrow. Please don't take life for granted. Get the drinks, see the shows, take the trips, re-connect, watch the sunsets, eat the desserts, LOVE YOUR PEOPLE.

9) I AM HERE!

It's not really news that I'm a HUGE fan of Pink. Her songs always get me through whatever crazy is going on in my life. But one song in particular is kind of my new attitude toward life. (Okay, not necessarily word for word, but the overall tone). 

"...I open up my heart
You can love me or not...

...I like whisky on ice, I like sun in my eyes
I wanna burn it all down, so let's start a fire...

...I am here, I am here
I've already seen the bottom so there's nothing to fear..."

10) And finally, for the love of all that is holy, THINK BEFORE YOU PINK! (The other pink...)

I am not a fan of Pink-tober. (Which is also an entire post I'm pretty sure I've already written). If you want to make an actual difference, don't buy all the pink stuff. INSTEAD:

-FUND RESEARCH. Figure out who's actually doing it and make a donation.
-Donate to a friend/family member's GoFundMe or ask how you can help. I have ideas, ask me.
-Participate in a Relay for Life.

When I re-read the post from my first cancerversary, I realize that I will just keep posting that every year, because I still mean all of those words, and everyone still asks what it was like to get THAT phone call. 

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! (Note to self...that means you too). 

There is something to celebrate about every day...find it.

And now, as promised, my post from Cancerversary #1, 10/9/13: 

One year ago today I was sitting at my desk after school when my cell phone rang. It was my now-ex-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. (After telling someone why I wouldn't be at work the next day). I spent maybe 10 minutes trying to decide if I was going to tell my now-ex-husband 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.

Edited in 2015 to add:
Go because you can.

Because why not?!

WEAR SUNSCREEN!

Edited in 2019 to add:

Get all the tattoos.

Watch all the sunsets.

"Don't be afraid of death; be afraid of an unlived life. You don't have to life forever, you just have to live." --Natalie Babbitt, Tuck Everlasting

In Which I Try Not To Get Angry

This news post filled my Facebook feed yesterday. (Click here).

And made me ANGRY!

Some complete jackass scams his co-workers out of their sick leave by faking cancer.

Okay, there are stories all the time about people who fake cancer. For the attention, the sympathy, the money, I'm not sure what their mental issue is (and clearly they have many), but it always gets me riled up. Even the gal that's been stealing my blog posts and passing them off as her own is apparently faking having cancer and using my words to tell people how "she's" feeling.

Seriously folks, if you want attention, you can have my cancer. Feel free...even for a day. I dare you. 

But this story touched a nerve. And made me especially angry. Because I don't know where I'd be without a shared sick leave option.

I was SO blessed to have amazing coworkers who donated sick leave so that I could stay home throughout treatments, concentrate on getting healthy, and not have to worry about getting a paycheck or losing my insurance. These amazing people made it possible for me to stay home for the equivalent of one entire school year (split up over two years). One of these amazing people simply told me, "however much you need, it's yours. Don't even hesitate to ask." I cry every time I think of the generosity of this man, and all those that were so willing to donate sick leave to me. Large amounts or small, it didn't even matter (in fact, the district would never tell me who donated what, so they were really doing it simply out of the goodness of their heart, not to get recognition).

Because, when you get sick, there's a lot of people that want to help but they don't really know what to do. And if they have sick leave they can donate, it feels like a tangible, concrete action that they can make...to show support, to contribute to the cause, to relieve even a small amount of stress. It's no small thing that they do. I mean, what if, god forbid, they get sick and need that leave some day? 

I will never be able to repay these people for the gift that they gave me. I strongly believe that being able to stay home and not stress about rushing back to work contributed to the success of my recovery. I could never say "thank you" enough for what they did.
And then you have this jackass who takes advantage of people who are so willing to help. GRRRR! 

I sure hope you get what's coming to you dude. You suck.

Relay for Life!

This past weekend I participated in Relay For Life by leading Team Stupid Cancer.

IT WAS AN INCREDIBLE EXPERIENCE!

I had never done a RFL event before so I had no idea what to expect. And it's possible that I wasn't the world's best team captain. But I am so grateful for the friends and family that joined the team. And everyone that stopped by to say "Hello" during the event.

This post would be incredibly long if I wrote about everything, but I just want to include the highlights:

Girl child and some of her friends joined the team! 

Teen boy came to visit and walk some laps with his mom. And he didn't die.

Team Stupid Cancer was AWESOME! We raised over $3,500!

Yeah to Lynn who stayed the entire time with me!

Yeah to Shay who came at 3AM and walked through the early morning hours!

Awesome friends who came and walked an hour here and there, or stayed for awhile and put in MANY laps. Next year, we will track our laps walked better.

The luminaria ceremony was incredible! I wish I'd known just how moving it would be. I would've made sure that my whole team was there to experience it. And my friend Senator Andy Hill was the guest speaker for the ceremony so it felt even more special to me.

There was entertainment throughout the event, including a beauty pageant...where the guys did their best imitation of beauty queens. One of the teens I've known since he was very young participated in the event. It was so much fun to watch!

I felt loved all weekend because friends who were not participating kept stopping by to do a lap to two (or more), bring beverages and snacks, and just say hi and cheer us on. THANK YOU!

My survivor friends were out in force!!! Hooray to all of us! Keep up the fight!

Feeling like you missed out? Oh, you did. But not to worry. I will definitely be doing this again, and my goal is to have a HUGE team next year. You can join us!

Thank you to all of you that donated to the cause!

Dance for a Cure

This weekend, I was invited to attend the annual Dance for a Cure event. This is an incredible evening of dancing, singing, stories, and speakers to raise money for cancer research. 

2014 marked the 10th anniversary of the event and I am so glad that I was there. Terrific dancing by students of all ages, as well as professional troupes, and musicians coming together to put on an amazing show.

Additionally, I learned a new term: Cancer Champion. Several Cancer Champions (survivors) were recognized during the evening. I've decided that I really like this term and might start adopting it. We are champions indeed!

The highlight of the evening for me was the keynote speaker, Dr. Jim Olson of Fred Hutchinson Cancer Research Center. He is leading the charge and making great breakthroughs in RESEARCH to CURE, not just treat. AMEN! This is exactly what we need more of. I was so glad that 75% of the $$$ raised from this event go directly to Dr. Olson and his research. (The remaining 25% goes to the Pete Gross House).

Seriously folks, look him up, see the amazing things that he's doing. Or find another center doing legitimate research looking for a cure and donate. The "Fund-an-Item" at this event went directly to Dr. Olson's lab. Keith couldn't get the cash out of his pocket fast enough. The discoveries being made will hopefully help someone else not have to go through ALL the surgeries I had to. 

This is an annual event. PLEASE put it on your calendar for next year! Here's the link to their website so that you can learn the story of the incredible sisters that started this event (and why), and keep updated for the 2015 gala.

And the Results Are In!

Monday was scan and blood work day, and Thursday was the follow up appointment with the doc to get the results. And, amazingly enough, it was actually pretty good news...for once. And since I don't want to keep you waiting any longer:

Clean scans!

Blood work was NORMAL!

Spots on the liver, lung, and kidney were all determined to be cysts that the doctor feels do NOT warrant further concern.

The doctor is happy, so I guess that means I should be happy too. And I am, honest. But...well, it's a little weird. I told almost no one the news all day long. Because it did not feel real; like maybe I was jinxing some cosmic force by saying it out loud and getting just a little excited about it.

But, by late afternoon, I was starting to get the texts and emails of concern as people who knew that I had this appointment were in a small panic when I hadn't been disseminating any news whatsoever. So I had to start texting people...and posting it on Facebook...and now, finally, putting it here. Good news for now.

Next round of scans will be April. I'm not sure I'll know what to do with myself.

Oh, yes I do...we're going to Hawaii, which will feel like such a nice reward.

Christmas came just a little early this year in the Yusko household. As one friend put it: Best. Christmas. Present. Ever.

Now, before you worry that I won't have anything to keep me occupied, please note that there's still a lot of things that I have to deal with in the New Year which will definitely keep me busy in January!

The secret (as in, I wasn't telling anyone about it because I thought it signified that the cancer had come back) pain I've been having turns out to be lymphedema. This will require physical therapy. I'm actually hoping that maybe I can get one appointment in before we leave for vacation to start to manage the pain. Which is remarkably annoying, and now that there's an better than average chance I can do something to mitigate it, I'd kind of like to get that started.

Doc also did a big "I told you so" when I told her that my New Year's resolution is to get my PTSD under control. So that maybe I can go back to work someday without wanting to kill people. (Seriously, one of the options on the doctor's "how do you feel?" questionnaire each time is "thoughts of violence towards others." Keith will never let me circle it!) I love that the doc just smiles at me with her "I'm pretty sure I told you that you were a crazy person and not ready to go back to work and needed to get a major handle on your craziness before trying to re-integrate into society" look. So, now she's taking charge of getting me help on that front with one of the amazing doctors at SCCA who specializes in my kind of crazy. This is priority number one in January, honest! Especially because I think the symptoms are actually getting worse and almost caused me to bring down the plane to Vegas with a panic attack. Good times. Especially if you were the couple sitting next to me on the plane who were not related to me.

Until then, I now have some great new meds to keep me sane...which also have the side effect of MAYBE getting the menopause craziness under control (or at least making the symptoms liveable). Yes, chemo induced me into menopause (like a ton of bricks). Yes, tamoxifen makes sure I stay there. Yes, I took my ovaries out and compounded the problem. Holy crap, did that ever compound the problem. It's like living in a sauna here 24/7. I've given up sleeping through the hot flashes because it's just easier to deal with them while awake and watching TV (and playing on the computer). I've been going to bed around 3:30-4:00am every night and getting up at 6:15am. Then maybe going back to sleep from 7:30-9:30am. I'm sure this lack of sleep has nothing to do with exacerbating the PTSD symptoms AT ALL, right?!

As I type this I realize that exactly one year ago today, I was headed to my first round of chemo. So I guess it's only fitting that I got some good news to mark this "anniversary." WOW. What a difference one year can make. I can't even begin to do a coherent post on how I feel about everything that's happened in the last year (and then some). I'll save that for another day...maybe as I'm relaxing on the beach.

Instead, I thought I'd put this montage together of my journey. Now, it took all of 2 minutes to make this using a fun new app I was playing with on my phone (which appears to have cropped the bottoms off of every picture, but I'll figure out how to fix that on the next montage I make). And I was just quickly scrolling through the pics on my phone. But they are in order from start to finish, so it's interesting to watch. Enjoy the ride with me!

And might I just say...WHEW! HALLELUJAH! THANK YOU! AMEN!

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:

• 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!

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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:

• 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...

Forever grateful...

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Music Monday

This suggestion came from a friend that lives in another state. I had never heard the song or the singer before. This is what I love about Music Monday...I'm finding all kinds of good songs thanks to all of you!

Saying Thank You!

This past weekend was the 3Day Walk in Seattle. I was very lucky that the route passed close to my house so I could get out and cheer everyone on, especially those amazing friends walking for me (and many others who's lives have been touched by breast cancer).

Now, having walked the 3Day before myself (twice), I know what it's like to have people cheering you on...and passing out snacks. It is amazing how much farther your feet will go when you have some sugar! So I wanted to make sure that I was saying thank you (see my sign above) and offering some sugar treats for anyone that needed a little pick-me-up. 

Another fun thing about the 3Day is all the people supporting the event and the crazy costumes and decorating of vehicles that you see. Plus, I love to see the walkers that have come up with great team names. (Probably because I suck at such creative endeavors). I think the best one I saw this year was a group of guys calling themselves the "Chesticles." 

Once I figured out that the route would be in Redmond on Friday, I basically invited myself to a friend's house, who invited us to another friend's house where we camped out in lawn chairs in the front yard, eating hummus and drinking beverages while the walkers went by over the course of about 4 hours. Armed with a bag of candy to hand out, and a thank you sign that I had made, I was able to clap, cheer, and say thanks to everyone that passed by. It was a really fun time! And it reminded me why participating in this event is such a moving experience. (It also made me really want to walk in a 3Day again...soon. Maybe next year? I'd really like to walk with the whole family, but you have to be 16 so we have 5 years until AJ would be old enough. Maybe some of us (which one is going to take it for the team? Husband? Or surly teenage boy?) could walk next year...marking 1 year cancer-free. And then we could all walk in 5 years to mark that anniversary? Hmmm...this has potential...though I might have to start fundraising now. That's a LOT of $$$ to come up with).

Here are some highlights of the day:
I saw kilt guy! But I wasn't quick enough to snap his picture. Ask anyone that has ever walked a Seattle 3Day, and they will know who I'm talking about. LOVE THIS GUY!! And that he always walks...in a kilt and boots.

I was able to give a hug to someone I knew in high school but had NOT seen since graduation. What are the odds that I would have seen her amid the sea of walkers?! Okay, she saw me first, but you get the point...

Loved the people who painted their tractor pink and drove it around all day.

All the bicycle cops were sporting pink tires. Awesome!

I was presented with a "survivor" bracelet by this Seattle Police Officer. Normally, these bracelets are blue and black and worn in honor of fallen police officers. Someone in her precinct made them in pink/black for the event and she handed them out to those of us battling in honor of her own mother's fight with breast cancer. I did not get her name or her badge number/station, so I am incredibly lame, but am so honored to be wearing it. (Of course, when she pulled her vehicle over to stop and present me with the bracelet, some of the people cheering with me were scared they were in trouble for the beverages they were drinking, so that was a funny story in itself).

 


Here's a picture of my friend Julia and her group of friends (all moms of current/former Evergreen students).

Here's a picture of the Sole Mates (who were amazing enough to invite my family to join their families at their post-3Day dinner celebration). Two of their group is actually missing from the picture as they were not walking with the group at the time.

Here's my friend Deb and her son Nolan. So grateful to all of you that answered the plea and donated to the cause so that Nolan could participate in this experience! I think I might be interviewing him to find out what he thought about the weekend. Kudos to him...and his mom...I'm not sure I'd really want to walk 60+ miles with a teenager that was related to me. (Hmmm...maybe I should re-think my family fun idea above).

So grateful to all that walked! Glad to be there to say "thanks!" 

Caregiver Wednesday: Guest Post #1

Another post in my Caregiver's "series" (which may or may not happen every week, but will pop up here occasionally). I asked several of my cancer peeps if they had a caregiver that was willing to respond to some questions. The first one I am going to post here is actually from a long-time friend that, with her mom, was a caregiver to her step-dad. 

Thank you so much for sharing your story Jen! I have merely copied and pasted her honest responses. (All of my asides are in parenthesis and italicized).

Who were you the caregiver for? My step-dad.

What was the type of cancer? Glioblastoma Multiforme.

What was the treatment?  Craniotomy/tumor resection, oral chemotherapy, radiation, and gamma knife surgery. (It's amazing to me how much caregivers end up learning about the cancer and the treatments...sometimes even more than the patient).

What did day-to-day look like for YOU?  Since I wasn't living with my step-dad at the time, my day started with a morning phone call from my mom (the primary caregiver) updating me with his condition, plan for the day, and overnight issues.  During the time that he was actively receiving care (chemo & radiation) I would drop my son (2 1/2 years old at the time) off at a friend's or my husband would work from home so I could pick up my parents and drive over to the U for treatment (University of Washington Medical Center...I'm guessing this involved driving over a horrible stretch of freeway in this area and a bridge, based on where I think that they lived at the time. If you are from Seattle, you know that this is NOT a fun drive to do every day under the best of circumstances).  My mom isn't comfortable driving on freeways so all appointments/treatments required a driver. A family friend and I organized a driving calendar. (Based on personal experience, this is a terrific idea and SUPER USEFUL for everyone).

What was your "role" as caregiver? (Yelling at doctors, driving to appointments, taking over at home, all of the above?)  Driving to appointments, being on point for emergencies (there were several), on Tuesdays/Thursdays, the days my son was at preschool, I would come by their house to visit and help, providing opportunities for my mom to take a break every once in awhile, by being there at the house or being by the phone and calling in every 30 minutes to make sure he was okay on his own.

What was the worst moment for you?  There were many, of course, but here are just a few.  The first was visiting him after his brain surgery and seeing the confusion and pain on his face and then once we realized that some irreparable harm had been done. He never recovered his speech, motor function, etc.  Feeling helpless during times when I couldn't be at the house to help. Each downward spiral of stages such as when we realized he needed a hospital bed in the downstairs office, hiring caregivers to help during the at-home hospice time, getting him a wheelchair, and finally when we saw his own sense of hope start to fade.  Of course, the times he spent at the hospice center was heart-wrenching, and finally his passing. (I cannot even imagine what this was like. And I feel that it's a good time to point out that while I loved my caregiver dearly, I really wasn't the person that was checking in to see how he was doing. People would ask me, "How's Keith?" and I would say, "you'll have to ask him." Seriously, people, check in with the caregivers. Theirs is a HARD road and few people remember to see how they're doing).

Was there a good moment for you?  I think making the choice to spend Tuesdays/Thursdays at their house was a gift. I had just moved into a new house and my son had started preschool so my "free" time was limited as was my capacity for truly being on the "caregiving front lines."  These are memories I treasure, just sitting and visiting with both my mom & step-dad. (So true, Jen. Thank you so much for sharing this. It's sad that cancer makes many of us realize that there are more important things to life than the hustle and bustle of every day that tends to take over. I am so grateful that you had this time...that you took this time).

Did you have to alter your life to be a caregiver? If so, how?  Yes, any extra time I had needed to be focused on my parents.  Not only did I want to help with logistical issues (driving, schedules, caring) but my mom doesn't have other family to help so she truly carried the weight of the world on her shoulders.  As best I could, I tried to help her emotionally by listening and being a sounding board for those times when she cracked from all the pressure.  I spent a lot of time on the phone with her and tried to be as present as possible while juggling my own obligations.

What is something you wanted to say to the patient but never did?  When my step-dad was clearly nearing the end of his life and was in a coma, we each took turns with him, talking and telling him how he changed our lives and that we loved him and that he could go.  I'll never know if he could hear what I said and I know that my love for him was something he felt...but I don't know why everyone always waits until the "end" to truly say all the important things.  I guess I wish he knew that all along...he was my true dad. (Amen!! Thanks for that reminder!!)

What is the one (two? three?) thing(s) that people say/said to you that you wished they wouldn't?  The whole "he's in a better place" thing, was tough...do they really know that? Or advice about "clinical trials" and going to Mexico to drink goat pee and such.  I know they were trying to be helpful but my mom and I spent HOURS researching and were choosing a treatment plan that we felt the best about.  This sounds weird too....but sometimes hearing about how "so & so had the same thing and they're cancer free and dancing the tango in Vegas" felt like a lot of pressure and didn't provide the intended hope. (This sounds suspiciously like my "what not to say to a cancer patient" post. Better amend that to include caregivers also).

What did people do for YOU that you appreciated?  Helping with my son was HUGE, it meant the world to me that I didn't have to worry about him while we navigated these waters.  Also, the family friend that organized the driving calendar since that was a monumental hurdle for us.  We also had a friend that made little radiation care bags that had juice boxes and snacks in them...that was great! (See people, sometimes you can help the cancer patient by helping his/her caregiver).

What is one thing that you wish people HAD done for YOU?  My parents would have benefited from a "dinner train"...people certainly brought by food, but something more organized would have been great. (Many websites do online sign-ups now for free: CareCalendar, SignUp Genius, etc. make this very easy to do. So offer to be the person that organizes this so the caregiver doesn't have to). For myself, just people checking in with me personally would have been nice...I did have a friend going through the exact same things at the same time (she was just a few months ahead of me) so we spent many hours commiserating!  Camaraderie rocks!

What is the best piece of advice you could give someone that has to be a caregiver? Be prepared to go through a whole range of emotions...sadness, anger, guilt...it's not an easy road. You absolutely MUST get out into the "real world" from time to time to realize that there are other things going on besides cancer and hospitals. (There are??)  Also, part of your role is an advocate and this can vary depending on the severity and condition of your loved one.  For us, my step-dad needed a lot of assistance so we really spent a lot of time researching and learning...you have to be a doctor yourself to truly make sure your loved one is getting what he/she needs.  And...remember to hold onto a little bit of yourself so you don't lose you completely.

Again, thank you for being so honest and willing to share Jen. I know that it was a difficult time, and appreciate your insight into how we can all help others through the same situation.

Next time, some thoughts on caregiving from another long-time friend...who happens to be the person that started me on my library career path.

Also, those of you reading this...if you were a caregiver and/or had a caregiver throughout the cancer journey and would like to offer some thoughts, contact me! And if I've already asked for your thoughts (cough, cough, husband, cough, cough), this is your reminder to get me your responses!

Music Monday

I had never heard this song, but a dear friend from high school got in touch with me and said that I had to use it for a Music Monday. It is a song that another friend of his uses as his "cancer song." Good choice! Thanks for the suggestion...adding it to my playlist now!

Radiation is Monumentally BORING!

And a giant time suck!

And really cutting into my social life!

Every day the same old thing. Blah, blah, blah. 

Thank goodness for the friends that are driving me every day. This does actually make it quite a bit more enjoyable than it probably should be. Entirely more fun than a girl should be allowed to have. I highly recommend this as a strategy to anyone who has the misfortune to have to go through radiation. Conscript friends into coming with you. A different one each day. It's the most creative way I can think of to keep in touch. And honestly, you don't feel quite so lonely. And then you have witnesses to the craziness that is your life!

And as for radiation itself, well, I guess not every day is boring.

There was "take you grandparent to radiation" day. That REALLY put a crimp in my day when it was running 45 minutes behind schedule.

There was the day when I decided to mention some interesting symptoms I was having...it went something like this:
Me: So, I'm having some shortness of breath. I'm totally used to this with chemo, but thought it was better, and now it seems to be back. And since you're radiating my lung and all, I thought I'd bring it up.
Doc: Hmmmm, that's unusual and shouldn't be happening. We could send you for X-rays? Blood counts? Appointment with chemo doc?
Me: yeah, I think I'm fine. Lets chalk it up to chemo, the gift that keeps on giving. Gotta run, bye!
(Because the minute anyone mentions X-rays, scans, blood draws, or more appointments I have learned to RUN from the building).

There was the day when the computers weren't synch-ing properly (the one the techs were using and the one that controls the machine) and everything went soooo slooooowly. Kinda reminded me of being at school.

And then there was today, which started off great (sarcasm) when the tech said, "Hmmmm, that's interesting." Yeah, when they have to page the physicist on site to come check out the "weird" thing the machine is doing, you know that you are in for some fun times.

Just so you know, I am going to be doing some "Take Care of the Caregiver" guest posts over these last many weeks of radiation so you don't have to hear me continually say: radiation...blah, blah, blah...
Stay tuned for those! I'm very excited for you to hear what it's like to be a caregiver.

Books I Loved Before the Diagnosis Which Really Resonate Now

In my other life, I am a pretty kick-ass school librarian, if I do say so myself. Hey, I work with middle school kids...that right there has to make me slightly insane and monumentally interesting. Obviously I am ALWAYS reading to stay current (I read somewhere in the neighborhood of 325-375 books/year). You can find out all about what I'm reading and recommending (not just for teens) on my library blog. 

Today on my library blog I decided to post my personal "Top 5" books where cancer plays a starring role. And then I decided to copy the post here because I think that all 5 of these books do a great job of dealing with the illness but not making it "another book about cancer." Without further ado...


Because I'm starting radiation on Monday, I thought that I would use today's Friday 5 to recommend my Top 5 fiction books for teens where cancer plays a starring role. The upcoming 7 weeks (every day, 5 days/week) of radiation will end just about the one year anniversary of when treatments (chemo, surgeries, more surgeries, etc.) began. It has been a long hard road that you can read about on my cancer blog if you are interested. These are books that I read pre-cancer diagnosis, but still resonate with me for "ringing true" to what it feels like.


(1) The Fault in Our Stars by John Green. I shouldn't actually have to say anything about this book, because it is pretty hard to go anywhere without seeing this book, or it's awards, or hearing talk about the upcoming movie, or watching the author's many videos online. I have had a not-so-secret crush on John Green for ages, but I swear this did not influence how I felt about this book. It is simply AMAZING! And, as I always say, you cannot be my friend anymore if you do not read this book.


(2) After Ever After by Jordan Sonnenblick. Another author that I am a huge fan of and read every book that he's ever written immediately upon publication (if not before). Jeff, 8th grader and cancer survivor, is such an authentic middle school voice. Of all these books, Jeff is the character I can relate to most. Humor and heartache and typical teen boy angst all rolled into one. Darn near perfect in my opinion.



(3) Me and Earl and the Dying Girl by Jesse Andrews. I promoted this book throughout 2012 in my webinars and seminars as the "funny man's" Fault in Our Stars. This is an excellent read, and the perfect story about trying to be the supportive friend of a cancer patient. And how, despite the best intentions, teen boys often screw it up. Love it!


(4) Drum, Girls, and Dangerous Pie by Jordan Sonnenblick. See, I told you I loved this author. In this book, which was actually the first book about Jeff (see #2 above), we actually learn of Jeff's initial cancer diagnosis through the eyes of his older brother Steven. Such a terrific look at family, love, and how life goes on. Told, of course, with the author's perfect mix of humor and warmth.


(5) A Time For Dancing by Davida Hurwin. This is the book that I always went to when those teen girls wanted something to make them cry. You know who you are. (Now, of course, I can also recommend TFIOS also...see #1). This is such an amazing story of friendship in the face of adversity. It still resonates with me all these years later. And a shout-out to someone for updating the cover!

Help a Kid Out!

I have had the honor and pleasure of walking in the 3Day twice (both times with my amazing friend Laurie!). Good God, did we have fun (although I'm not sure I would've classified it as "fun" while I was doing it...especially the year that it POURED rain on us). I would not trade the experience of walking in this event for anything, and someday, I hope to be able to do it again, as I now have a completely different perspective on it.

Almost immediately after I was diagnosed, my dear friend Deb decided that she was going to walk in this year's 3Day for me. And then, immediately after she decided to do that, her 16 year old son (a former student of mine), decided to join her. AWESOME! I love them both dearly for their commitment to the cause, and for their support of me. I hope that I can get out on the course and CHEER THEM ON in September! Please join me!

Here's the thing: in order to be able to walk in the 3Day, you have to raise $2,300. (Now, regardless what you might think about the recent politics of the Komen Foundation, this money does do good things. I wish that more of it went to research, but that's a discussion for another day). Having raised this money twice, I know that it's not easy to do, especially in this economy. I think one year, I went right down to the deadline before meeting the goal. Deb hit the $2,300 goal some time ago, but Nolan has not. When you are 16, not a lot of your friends have the kind of money, or the desire, to donate to your cause. Amazingly, he is a little over halfway there. And I think that we can put him over the top! If you have ever considered supporting a walker in the 3Day, this is your guy! (Thanks to those of you that already have, BTW). I donated my $25, and every little bit helps...even a few dollars.


I'm including his Facebook status the other day so you can see what kind of kid this is. Plus some pics: (1) me with him and his mom, and (2) the mohawk that he will sporting for the walk (which will, of course, be dyed pink). And please note, this kid just gave up participating in a music concert which he had been practicing for because he just found out it falls on the same weekend as the 3Day.

"Friends and family, This September I am taking part in the Susan G. Komen 3-day 60 mile walk for the cure. When I attended Evergreen Junior High school as a student, the librarian there eventually became a family friend of mine. Recently, (in 2012) she was diagnosed with breast cancer leaving her fighting but inspiring me. She is the reason I am walking in the 3-day. In order to walk I need to raise $2300; with your help I will be able to walk for her and the cure. 
Thank you in advance for your support of my 3-day journey,
Nolan"

Love him as much as I do? Here's the link to donate to his efforts.

Music Monday, a Little Early

I am posting this Music Monday a little early. And yes, I know that I have already used it as a musical inspiration. 

However, this song needs to be posted today because a new friend for life starts her chemo journey today, and I just want her to know that I'm here for her!!

Prayers to you my friend...and to anyone else out there that needs it!