To my darling daughter...

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

To My Husband...

I've been meaning to write this post for quite some time. And I keep starting it and then saving it for later. If I was actually really smart, I would have posted it on Valentine's Day...or maybe wait until our anniversary...and then it could double as a gift.

But why not now?! And based upon my own "life's too short, tell people how you feel" mantra, I shouldn't delay. And since he only occasionally keeps up with the blog (reading it is kind of like having flashbacks for those of us in the trenches), he will probably never see this anyway. And I'm sure if no one ever tells him it exists, we could start a betting pool to see how long it would take him to read it...



Dear Keith,

We have been together forever. And then some. There are very few memories I have that don't include you. We have weathered some major storms in our lifetime...more storms than two people should have to face. Each time we plowed through hoping to simply get out the other side with minimal damage. But, to be honest, I think each trauma left it's mark on both of us. 

It is no secret that the past few years (pre-cancer) we were not friends. It might even be safe to say that we didn't like each other very much. I don't think anyone in our family was happy. One stressor too many had just pushed me into a place where I didn't care any more. And now that I can look back on it, I am so monumentally sorry for those shitty years. I'd give the world for a do-over.

Like they say, be careful what you wish for. Because now I get the do-over, but I had to go through hell to get it. 

No one knows what it was like for me these past 20+ months. But, if anyone comes close, you sure do. You've been there in the trenches every step of the way.

I'm sorry:
...for all the times that people asked, "How's Keith doing?" and I had to say that I didn't know. I'm sorry if it sounded like I didn't care. But I just didn't have the strength to care about anyone but myself.

...for all the times that you had to hear me say, "I'm done with treatment, and I don't care if that means I'm going to die." There were days when I really didn't care about leaving you and the kids because I was so over the entire process. And I'm sure that makes me a bad person, and you might have even thought I was terrible for thinking it, but you never said so. And you let me rant. And you promised to agree with me (even though I know you really didn't). 

...for all the times that I said, "gawd, get out of here, that food smells." But it really did. Who'd have thought trail mix could smell so awful?!

...that I don't have any idea what it was like to be you throughout this ordeal. 

...that I will not be a good caregiver if our situations are ever reversed. I am going to suck at it. I've considered running you over with the car instead. You might hear words like, "suck it up," "get over yourself," or "you think this is bad?!" I cannot imagine going through this process again, and I'm not sure that I'll be able to come up with the requisite sympathy. Though I will be able to bring the jokes.


Thank you:

...for running to get crappy McDonald's milkshakes and bland chicken noodle soup at all hours of the day and night because those were the only things that I could eat for days at a time. And for making three different kinds of soup until we found one that worked. And for heating it up until it was just the right temperature. Lord, I sound like Goldilocks...

...for laughing with me throughout the entire process. And at the doctors. And getting yourself put on the "no-fly list" at one of them. (Kidding). Thank you for appreciating my morbid sense of humor. Perhaps it's not the most healthy, (and you do realize that our son has it also, so we might not win the best parents award), but laughter was definitely needed on many an occasion.

...for respecting my wishes to be alone during chemo even though EVERYONE thought that made you a bad person. The looks they gave you...

...for shaving my head. And bringing humor to the situation. And for shaving your head for all those months.

...for finding my Katy Perry wig!

...for telling me you'd do whatever I wanted when it came to treatment options. And for backing me up when I went against medical advice. You had some pretty hard shoes to fill when I needed to find friends to sub for you at various doctor appointments. 

...for being there every day. And taking care of me so completely. I will never find all the right words to express how I feel. And I can never say thank you enough. 

Please know:

...that I am so grateful that we have the same outlook on life now. And what the future holds. And where we want to be.

...that I intend to live a life that is all about being happy.

...that it is unlikely I will ever go through treatments again. Every day I saw all the old people going through chemo/radiation/both and it made me so monumentally sad that this was how they were spending their last days. Sorry, that is not going to be me. 

...that we've both come out the other side of this completely changed. And I think it's a good thing. And I think that means that we get a do-over on life...and love...and us. 

Love, Me

In Which I am Thankful...To Be Here

Continuing the gratitude posts today with some quick thoughts on how much difference one year can make.

Last Thanksgiving, we were in Las Vegas (as usual) to celebrate with family. But there was nothing usual about that trip. Don't get me wrong, I was grateful to be there...grateful that I had forced the doctors into letting me go (or maybe I forgot to mention that I was going??), grateful for my dad who paid for the airline ticket so I wouldn't have to sit in the car for 17 hours each way while trying to heal from a 2nd surgery, grateful for family that was there and especially for my "adopted" family that was able to join us. 

But, in the back of my mind, my thoughts were swirling. What if this is the last vacation that we take together? I should be making the most of this vacation, but how? I was making an inventory of all the things I was going to miss in my children's lives. What if the treatments don't work? What is going to happen when I start chemo in a couple of weeks? What if the scans never come back clean? (They still haven't...fingers crossed for the upcoming one in December). What's going to happen to my kids? My family? Me????

And to top it all off, I was exhausted during this vacation. I napped quite a bit, I couldn't walk everywhere like I thought. I hadn't even started treatments (other than some surgeries) and already I was feeling the effects of this angry cancer in my body. (Little did I know that this exhaustion was nothing to what I feel on a daily basis now, but at the time, I really did feel "sick." And maybe it was simply because doctors had put that "C" word in my head).

Fast forward to this Thanksgiving. I'm back here, in Vegas with the family. We are ENJOYING every minute of this trip. Food, shows, the gorgeous penthouse we were upgraded to. ENJOYING. EVERY. MINUTE. (This is the view from the "reading room").

And that's what I'm thankful for today...that I am here. That the HORRIBLE last year-plus that I have endured has kept me alive to enjoy another Thanksgiving. That has me looking forward three weeks when we will be off to Hawaii for a return to our annual Christmas vacation, which I have missed desperately throughout all of this.

I am grateful for the doctors/surgeons that I LOVE and that have taken such good care of me. The nurses that laughed with me. The receptionists that always knew me by name and commiserated with me about the teenage boy. My favorite pharmacy gal Megan who literally saved my sanity.

I am grateful that I trusted these people enough to let them do almost anything they wanted to do to my body. And I'm grateful that "Bring. It. On." is actually a good attitude to have and that it served me well.

I am grateful that I survived it ALL. Everything they threw at me. 

And as I head out to enjoy yet another amazing meal in Vegas, I will leave you with a thought that I stole from one of my favorite author's Facebook posts this morning: I am grateful for the resilience that comes from having scars!

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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How I Am Now...

Today seemed like a good day to chart my "progress" toward returning to a "normal" life. Now, before you start laughing, yes, I know that "normal" is a relative term and that my life has a new normal now. Every day I deal with my new normal, but I couldn't really find a better word.

So, here's how I feel today, which is:
29 weeks after my last chemo treatment. (Seriously? It's already been that long? It feels like just yesterday. I am still traumatized by the thought of waking up every week to willingly put myself through that. 16 rounds of chemo in 20 weeks is still unfathomable to me...some days I don't know how I survived. Some days, I don't think I did survive).

9 weeks after my last radiation treatment.

2 weeks after my 5th, and hopefully FINAL, surgery. KNOCK. ON. WOOD.

Numb: Lots of different ways to interpret this, and it is possible that I am a little numb to the world, but I actually mean this in the most literal sense. My hands and feet are still numb, a residual effect of the chemo. There are days that are better than others which gives me hope that some day, ten years from now, everything will be back to normal. But then there are days when it is worse and I think, no such luck. But I'm so used to it dealing with it now, that I really don't notice it.

Tired: I can't imagine a day when I'll be back to the way I was before all these treatments started. I definitely have good days and bad days as far as my energy level goes, and maybe that's the most annoying thing...that there isn't rhyme nor reason to why I feel especially tired one day over another. I can be feeling great and then suddenly, WHAM! I've hit the wall and cannot go on. Or I'll wake up at noon one day and not have the energy to get out of bed. I've been known to yell at Keith, "why did you let me sleep that long?!?!" To which he always replies, "you obviously needed the sleep." Well, yes, but I would also like to be a functional human being every day, not a sloth. Oh well, a girl can dream.

Angry and Emotional: I'm not even sure what to call this category, but I'm pretty sure that it all goes back to PTSD, which I'm positive that I have. (After further study, I have learned that 10% of cancer survivors have full-blown PTSD, and 60% of cancer survivors have some form of PTSD. I'll be doing a future blog post linking you to some of my findings, written by people who did a much better job of explaining it). I have panic attacks, anxiety, moments of profound anger, unexplainable emotional outbreaks...I feel like I'm a ticking time bomb. When Keith and I went to Vegas in September, I almost had to have them bring the airplane down somewhere over the Nevada desert as I was having a full-blown panic attack. Yes, I know I need to get help for this...I'm working on it. Just been a little busy. This is my goal for December or the new year, I promise.

Stupid: Chemo brain and I are not friends, but I'm finding ways to hopefully make up for my lack of brain power on many days. I watch the kids compensating for how they have learned to deal with me and I feel bad. Teen boy will yell at little sister for constantly repeating a question, but I know that she's doing it because she thinks she has to. I have also since learned that memory issues are a symptom of PTSD (see above), so there's that too.

Sore: Well, that has to be a given, right? I just had surgery 2 weeks ago. I actually feel much better this week than I did last week. But the doctor says that I still have 2-3 weeks until I can "do" things more exhausting than walking. But Vegas for Thanksgiving is still on, because really, that's all about eating and sitting in the sun, and pretty much nothing was going to stop me. Just don't make me laugh.

Old: I feel like I have the body of someone who is at least 20 years older than me. I hope that some of that goes away over time as my energy level increases. But chemo threw me into menopause, and this most recent surgery will make sure that I stay there, and it's not any fun. Chemo-induced menopause hits you like a ton of bricks and never lets up. And since having my ovaries removed, it's just gotten worse. Okay, so it's not like I didn't think it was going to happen, but I really didn't think it could get worse. HA! I greatly misjudged that one! Oh well, nothing I can do about it now...it's not like they're putting anything back. I do have an appointment with the chemo doc after the holiday and we will discuss if there is any way to manage these MOST ANNOYING symptoms.

Tired: Did I mention this already? I'm sure that it doesn't have anything to do with the horrible insomnia that I have (again, a symptom of PTSD and menopause, so not sure who's at fault here). I would say that it's gotten worse since the surgery, and 3:00-4:00am is my new bedtime, if I'm lucky. Which is awesome when everyone has to get up at 6:15am to get ready for school.

Misc: Every time I do presentations about books to kids or grown-ups, I always have a "Misc" category, so why should this be any different.
My range of motion is still not what it was, and this is completely on me for not continuing with physical therapy. At some point, you just start bleeding money and you're tired of being in yet another doctor's office, so these appointments were a casualty of both. But I did just start up my massage treatments again this week.
My taste buds are probably at 70% of what they were, and I know this will not change. So many things no longer taste good to me, and many things that I didn't like before chemo I love now. Crazy! But survivable.
My hair is growing back but I think my eyelashes are starting to fall out again (which scares me). I'm currently pretending that my eyelashes aren't really thinning (ignorance is bliss). The hair is a weird entity that doesn't feel like mine. I don't mind it short at all, but the color is so strange, and the texture is different (it reminds me of cat fur), and the curls are making me insane. But we have determined that we don't think there is nearly the amount of grey there was, so possibly one perk?!

Ongoing concerns: I continue to take Tamoxifen every day (and likely will for the next 5 years). But I'm going to check on this at next appointment because I'm kinda not a fan. I have my first scan and blood work scheduled for December, and then it just keeps going every few months after that. Will keep you updated. Also, it's very hard to explain what it's like to be living a life where there's a possibility of recurrence around every corner. Where you never truly get a clean bill of health. Where you live in fear of what they may find on the next scan. Where they tell me "if you're alive in five years, then the treatment worked." Awesome! I try to think positive and not worry, but there's always a nagging fear out there...

GRATEFUL: Again, it will never be possible for me to thank every one individually for all that you have done for me and my family. I cannot even put into words the gratitude that I feel...I get emotional just thinking about how lucky I am to be surrounded by friends, family, and a community that cares. Really and truly the only thing that I can do is pay it forward (or return the favor if you ever need it). Stay tuned for my Thanksgiving Day post...

Hopeful: Just this past week, I have started to look to the "future" and things that I want to do. A couple of things that are on my radar right now include forming a team (or two) to participate in the June, 2014 Relay for Life event here in Redmond. I will be doing this and will update you once I register. I'm stumped on a team name, but hope to have one in the next few weeks. If enough of you want to join me, we can have 2 teams...or a kids' team. (They recommend 15-20 people/team). Let me know! Or find a Relay for Life event in your area to participate in! I am also setting my sights on competing in an Athleta Iron Girl triathlon in August, 2014. (It's nowhere near Ironman distances so don't be thinking great things about me just yet). But I've enlisted the help of a friend (and Ironman competitor) who has promised to whip me into shape! And to do the event with me! Anyone else want to join?!

And, lastly, my more immediate goal is to read ALL the back issues of Food Network magazine that I haven't touched since October, 2012. Food has definitely not been my friend this past year, but now, I'm in a place where I want to peruse them! Grateful for these small miracles!

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!" 

Cupcakes Cure What Ails You!

October 24, 2012:

Today, my daughter made cupcakes and cake for the teachers/staff at my school. She said that she had to do it to thank them for "giving you their sick time so you can get better." It kind of makes me tear up thinking about it. Baking is her way of dealing with anything, because let's be honest, cupcakes cure all of life's problems! Especially when they're made with Nutella buttercream frosting!




Update:

And this is the Thank You note I found when going to retrieve the platter. Bonus points to the anonymous staff member that did this! You are going to MAKE HER WEEK!