Music Monday

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.

More info on the day can be found by reading this article.

Recently, Anderson Cooper named Zach one of 2013's Extraordinary People. I'm sure you can find the segment online. It was really moving.

I figured this was a good video to wrap up 2013's Music Mondays.

And if you love the song as much as I do, go ahead and download it.

Music Monday

I love this video! You've got to watch it all the way through!

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!

The Beginning of the Scans...And the Waiting...

There hasn't been a lot of news to share recently. I survived the food fest that was Vegas at Thanksgiving. I'll have to do a post showing all the pictures of all the yummy food and fun we had. It was a MUCH NEEDED and relaxing vacation with the family.

I still have to finish my "I'm so Thankful for..." posts. November ended before I could finish, and then I promptly forgot that I had many more gratitude posts to write (chemo brain!).

Today, however, marked the first "post-treatment" scan. 

Now, before you get too excited for news, you should know better. It's all about "hurry up and wait" as the follow-up appointment to discuss the results isn't until the end of the week. Awesome scheduling on their part. Whatever. 

And, as I discovered today, it's HIGHLY likely that today's scan was NOT scanning the parts with cancer, but every other part of my body that lit up on previous scans (pre- and mid-treatment) to see what's going on with my lungs, liver, kidneys. The technician was pretty convinced that chest and armpits would not be seen in the scan. UGH! Guess we'll be having that discussion with the doctor. I kinda thought today was a full-body, see everything you can, scan. Guess not. Did I already say UGH?!

But, lest you think I've lost my sense of humor, let me tell you about my day anyway.

I arrive at 9:15am for an 11:00am MRI. This is because the doctor has requested that I get a blood draw before the MRI, and so that the anesthesiologist has time to get all the IVs hooked up. (Yes, I finally discovered that I would not have to remember my trip through the scary tube of death...I could be completely under while it was happening. Thank you insurance company for paying for today's adventure!). In the reminder phone call, the doctor's office says, "just pop on by before your MRI for a blood draw." To me, that means pop on in when you get here and we'll draw your blood in a hurry and get you on your way. HA! What was I thinking? I should have known better! I've been dealing with these people for over a year and they are NEVER speedy...or on time. I was spoiled by the on-time percentage for radiation and forgot what a cluster the rest of the place was, especially on a Monday. So, after waiting 10 minutes just to CHECK IN, it's a 30 minute wait for the blood draw, which makes the MRI people really happy, by the way. I consider wandering the hallways of the hospital looking for anyone that could draw the blood for me. Keith even considers doing it at one point (and he probably could have after watching it done so many times). Four vials of blood and 40 minutes later, I'm on my way to check in for the MRI.

And this is where the day gets kind of interesting. And still has me considering writing a letter of complaint to the hospital. Now, I normally get awesome and friendly service from everyone not associated with a billing department. I only complain about time delays, I don't really hold it against them because everyone is still so pleasant. However, today was definitely an exception.

So, I check in for the MRI and am waited on by the RUDEST. GUY. EVER. Seriously. If he was my child, I would've smacked him. He's rude to me, he's rude to his coworkers (which actually pissed me off more)...he has me saying snarky things under my breath because I know he will not appreciate my humor today. And it just might make the situation worse (see, I am able to keep the humor in check when the situation necessitates it). I'm trying really hard to chalk it up to a bad morning on his part...maybe he just found out they're laying him off...I don't know. But then I realize that it's not just him. The MRI technician is rude to the anesthesiologist, the anesthesiologist and the nurses do a very poor job of communicating nicely to each other. All of this anger right in front of me, before a procedure I'm a little terrified of. Did the hospital just cut everyone's salary? WTH was going on there this morning?

Angry energy aside, there were some entertaining parts:
I was asked no less than 26 times today about my port and where it was placed and what kind it was. Which was removed in June. Which I've mentioned each and every time I've been in the hospital for a procedure since then and been asked the same question. Which everyone claims they will "update in my records." No, you may not administer drugs and/or do blood draws through the port...IT DOESN'T EXIST. How tough is this?!

The anesthesiologist could probably have given Hans and Franz a run for their money. He must have his scrubs custom made. Biggest muscles I've seen in a long time on someone not The Rock.

Said anesthesiologist kept forgetting what required questions he had already asked me (allergies, etc.) and was repeating himself a lot. Does not really inspire confidence in someone in charge of making sure I come out of this alive.

I am wheeled all the way down to the MRI "station" and only then is it discovered that no one has the drugs I'm supposed to get. And they all look at each other like they can't figure out who's supposed to be in charge of this. Again, really inspiring confidence.

A couple of positive takeaways from the day:
Hans/Franz did the IV himself. And he was good at it. And he thought to bring pediatric IV needles, and recommended that is what should have always been used on me. Thank you for this tidbit! Will be asking for these from now on!

Keith and I were sitting outside the oncologist's office (in the lounge area...anyone who drove me to radiation will know where I'm talking about) waiting for the blood draw. (All the seats inside the office were taken). At the table next to us was an older gentleman who had purchased a vitamin water and was waiting for his turn to be called also. I have my back to him, but Keith is watching him struggle to open the bottle. And Keith knows this because it is the same look and struggle that I have opening these bottles (damn, do they superglue the lids on these things?!). And chemo kills any hand or joint strength you might ever hope to have, so he knows that this guy is never going to open it. So he stands up, walks over to him, and asks if he can open the water for him. And the guy is so appreciative (because he's probably desperately thirsty like I am). I loved the whole interaction. Hubby was being nice to someone, not just me. I realized that I wasn't the only one in this situation. And this gentleman accepted the help (which could have seemed offensive or intrusive). Lesson to us all: offer help if you can give it. Accept it if you need it!

Stay tuned for news and results...will update when/if I find out anything!

Music Monday

I'm not even sure if I've already used this song, but I really like this song. And hope that those that need it, believe in the message as well.

And some day, when teenage boy spends the time to read through this blog, I hope he knows that I mean these words...

Music Monday

So, I keep hearing this song during the very few times I've been in the car over the past few weeks. I feel like this must be a sign that it's supposed to be a Music Monday selection. And then the DJ just said that you have to watch the "dog version" of this video. So, here you go!

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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Music Monday

I am a big fan of many reality TV shows, so it should not come as a surprise that I love watching "The Voice." This recent performance was one of my favorites (from any season)...a terrific rendition of one of my favorite songs. Which isn't easy to sing. Great job! I'll be voting for this kid for the remainder of the season!

PS You can stop watching at the 1:57 mark if you don't care about the commentary and critique by the judges.

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!

Music Monday

Well, it is Veteran's Day, so I thought that I would post something patriotic today.

And the fact that it just happens to be sung by one of my favorite singers? All the better!

From the recent World Series...

What Not To Do at Surgery...

Surgery on Monday was an adventure. Here are just some of the highlights:

We were required to be there at 6:45am for check-in. I'm not sure that surgery was scheduled until 9am, so this always makes the day even better...because I "love" getting up early. 

For future reference, it is not advisable to do any of the following things that I did:

(1) Because I feel like I'm an "expert" at this whole surgery thing, and this trip to the hospital was for my 5th surgery, I dodged all of their pre-op phone calls asking about my height, weight, allergies, overall health, etc. And where they also give me the "don't eat after midnight" speech. Yeah, whatever. If you don't have all my medical history in front of you by this point, I'm kinda scared for you. And if anything is glaringly absent, I know that I'll be required to answer your questions all over in the morning anyway, so those calls went straight to ignore. (Yes, I've actually memorized which phone number each unit of the hospital calls me from).

(2) When checking in, it's probably a good thing to know which doctor is performing the surgery. Turns out the staff didn't like the "Hmmm, I'm actually not sure" answer. Bonus points to Keith for knowing his name "starts with an I."  

(3) When checking in, part 2...also good to be able to communicate what type of surgery you are having. "I'm just here for the ride" did not go over well as an answer to that question. But did accurately convey my attitude.

(4) They also don't find it funny if you cannot find your insurance card...EVEN THOUGH YOU'VE BEEN TO THE SAME HOSPITAL AT LEAST 300 TIMES IN THE LAST YEAR FOR A VARIETY OF TREATMENTS AND TESTS AND APPOINTMENTS, AND HANDED YOUR CARD TO SOMEONE AT LEAST THAT MANY TIMES, AND YOU DARE TO ASK, "Don't you have it on file???"

I'm pretty sure to pay me back for these outrages, and my laissez faire attitude, karma got me back by way of a nurse who could not put in my IV. Two blown veins (see picture below) and another nurse later, and the third time was the charm. But wow, did that process ever hurt! And took a really long time.

Again, I don't remember much about the process. I'm sure that I was wheeled into the room somewhere around 9am. I have a vague recollection of being put on the coldest pillow of ice ever, but that's about it. I think I woke up in recovery at 10:15am, so maybe that 9am time can't be right. And, quite honestly, I was out the door by 10:45am, pain meds in hand. (At least I do always know to say "no" when asked, "Are you going to be staying overnight?").

How I've felt the past few days? Like I was stabbed in the stomach with a steak knife. Oh wait, I was.

I have three lovely 2 inch scars in my abdomen now...one through my belly button. These feel awesome and make doing anything fun. Did not realize how much I used my core muscles before now, but they sure would come in handy for things like sitting up, standing, coughing...breathing. Teenage boy was making me laugh last night and it hurt so bad. Couldn't yell at him to stop. Or beat him up. And he knows it!

This anesthesiologist decided to stick a tube down my throat while I was under, and I have to say, I think he JABBED it down my throat and RIPPED it back out because I still have a sore throat. Not the gentlest of touches to say the least. 

Another fun feature of the surgery was that they filled my abdomen with gas in order to get around the intestines to all the parts that needed removing. This gas does not all disappear right away. It makes your stomach (which again, feels like it was stabbed with a steak knife) bloated, and causes unusual pains in your shoulder. (Don't ask...I'll explain it to you in person). Super fun! Kinda feels like I just had a baby via C-section.

Tonight is day 3, post-op. I can walk around slowly, but not standing upright; I can roll myself out of bed or into a sitting position, albeit very precariously; coughing, laughing, and taking deep breaths are killing me; and absolutely NO lifting anything.

Doctor said that I would probably be "back to normal" in about a week. That's funny, and considering said doctor is a man I'm kind of not surprised by this attitude. I couldn't even imagine going back to work on Monday. How's a person supposed to put on a seat belt???!!!

Another Day, Another Surgery

It's been a crazy week in our house.

Teenage boy drama...awesome. (This will be another book someday, I promise).

Halloween...I've realized that what used to be my favorite holiday, just doesn't have very many good memories associated with it these past couple of years. I actually spent the weekend considering cleaning out all the decorations I've amassed over the years and just getting rid of them now. Never got in the mood to decorate this year, and not sure how I'll feel in the future. 

Last day of work for awhile...exhausting. Work is SO. MUCH. HARDER than it ever used to be. Probably wasn't ready to go back. Will have 6 weeks off to re-evaluate.

And now, I've got about 3 hours to stay awake so that I can have my "last meal" before yet another surgery tomorrow morning. No eating or drinking ANYTHING after midnight. And believe me when I tell you that since this makes the 5th surgery in the last year, I'm an expert and have learned some valuable pre- and post-op lessons. The most valuable pre-op strategy? When they say midnight is the cut-off, that's not entirely true, BUT it does mean that you can eat and drink all you'd like right at the deadline. And then you won't be STARVING and DYING OF THIRST in the morning when you wake up. So, Keith and I went to dinner and dessert (just us), and then home to watch some TV and do laundry (whoohoo, exciting!), and now to stay up so that I can have "dinner, part 2" at 11:45pm. Haven't decided what that meal is going to be because I'm not actually that hungry yet, but it will include a GIANT glass of honeycrisp apple cider plus a glass or 2 of water. Seriously, after the first surgery, when I was so parched in the morning I almost killed a nurse for her mocha, I have learned to load up at midnight.

Tomorrow, we have to be at the hospital at 6:45am. This might seem like the butt-crack of dawn (because it is), but it is MUCH later than the original 5:15am that they told me, so I am actually celebrating this painfully early time. I have no idea what time the surgery will be however, so you'll have to stay tuned. 

And this is where I'm at with my medical care: I know almost nothing about what they are doing to me tomorrow. I go into kind of a trance when I listen to doctors explain details these days and my brain surely doesn't retain any of the information. And I don't even care. I need it done? Great, let's do it! Symptoms? Side effects? Long-term care? Didn't even ask...

And on a funny note: the hospital where I'm having this surgery tomorrow is the hospital that is suing me for a past-due balance. Yes, they are actually taking me to court because we have a relatively small outstanding balance. Of course, since we made payment arrangements with them and then they stopped billing us, we kind of assumed that we'd paid it off, but fine, this can all be my fault. No problem...I need another thing to stress about. I mean, it's not like you haven't received tens of thousands of dollars from my insurance company or anything. UGH! This is a post for another day as it makes me so angry that I have to go to court over this now. And as tempted as I am to say something tomorrow, I'm sure it is in my best interest not to bring it up before they operate...

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!

I Feel Like I Have PTSD

Yesterday was further proof that I probably should not be at school because I don't think that I am a functional human being. 

In fact, I think I might have PTSD. Now, I know nothing about PTSD, but it would not surprise me to find out that I have some of the same symptoms.

I have been suffering from lots of craziness, because my brain is WRECKED. Depression, anxiety, panic attacks, breakdowns...I've got it all. And have been known to break into TEARS for no real reason at all.

Case in point, yesterday. I am at a staff meeting...really just listening. And then, when I've got the floor to just remind people that they've got about a week until I'm out again for months (another surgery, remember?!) and that they might want to tap into my knowledge base while they can, I sort of lost it. And might have talked about how much I don't really want to ever come back. And there may have been mention of other things I'm not a fan of. And I was trying REALLY HARD not to cry in front of all these people. Please note, these people did NOTHING to me...nothing. It was all my brain.

I managed to make it to my car after the meeting (luckily at the end of the day), and cried the entire way to the grocery store, and while in line at the bank, and the whole way home again. A good 45 minutes of wallowing in how much I don't want to be working. And all the things that suck about my life. Because once I get rolling, there's no turning it off. 

Rational or not...that's my life.

And could be why the oncologist said if I don't get therapeutic help soon, I'm kidding myself. 

It's hard when everyone around you thinks that you are "back to normal." Your hair comes back, you look relatively healthy, you're done with treatments, so of course you should be back at work and doing all those things that you used to do, right? Not so much. Really need to reevaluate.

Luckily, this weekend I am going to a conference sponsored by the folks at Living Beyond Breast Cancer. Hoping to gain LOTS of information that I can use to try and put myself back together. Will surely be writing posts about the experience next week.

In the meantime, be warned...I can break out into tears without any notice!

Chemo Brain in Action

Just thought I'd offer further proof that chemo brain is a real thing...and so much fun to deal with. Here are just a few examples from my daily journeys:

(1) At the new surgeon's office, filling out paperwork/forms (because you can obviously never do that enough), I was stumped by one of the questions.
Marital Status     S/M

I was supposed to circle an answer.

I am not kidding when I say that I had to skip the question on the first pass because I didn't even know what marital status was. The second pass didn't really clarify the question for me and I finally had to ask Keith for help. He had a great laugh over this. Good thing that he was there to help my brain along.

(2) Going through the drivethru with the teenage boy on the way to his soccer game. We had hoped to stop for breakfast sandwiches at Starbucks, but they were out, so we were forced through the Wendy's drivethru. I ordered his sandwich, gave the guy a $20, and drove off. While teenage boy is screaming, "What about your change????!" Had no idea what he was talking about or any memory of handing the guy a $20. (Luckily, there was no one behind us in line, so I could do a quick back-up in the lane and collect my $18.50).

(3) A co-worker asked me to order a book for her. She even wrote down the title and gave me her school credit card number. It is on a giant sheet of paper stuck to my desk...I've looked at it every day I've been at work for the past 2 weeks. Yesterday she asked me when I thought the book would arrive. Hmmm....that would require me to have ordered it, right? Whoops!

These are just small samplings of what it's like to be me on a regular basis. This does not include all the sentences I speak where I mix up the words (though this is fun to watch the kids' brains spinning trying to translate what I meant to say without asking me to repeat it). Or the times that I forget the kids' names. Or that I've had my son's paycheck from reffing soccer in my purse for 4 weeks now because I forgot to go to the bank (even though there is a sticky note stuck to the dash for all those weeks that says, "BANK!").

Chemo brain ROCKS...

Music Monday

Just went to the P!nk concert over the weekend with my friend Deb (oh, and the husbands were there too). It was AMAZING...as always! Such a good show! So happy to be there!

It's not cliched when I say that having this date on the calendar really was something to look forward to over the last many months.

So, it seemed only fitting that I pick a P!nk song for today's Music Monday inspiration. Tough choice though...finally settled on this one...

A Radiation Retrospective

Thought I would do a photo-timeline of my radiation burn from start to finish.

The initial markings and tattoos to determine the area that would be radiated for the first 28 days.

28 days in, you can't see much in this picture as the "damage" is mostly in my armpit and other parts not shown in the photograph. However, the last 10 days of radiation were a concentrated gamma type that required a different treatment area. The purple sharpie is marking this new area. Note to self, should there be a next time, just leave the sharpie on. Scrubbing it off was a BAD idea. Monumentally Bad.

On day 35 of radiation? Almost the end, not quite sure anymore which actual day I took the picture (and too lazy to look through my Facebook page for verification). Looks like I've been ironing myself. And that's what it felt like also.

After the 38 days of radiation were over, the burn got progressively worse for the next month. This was one week post-radiation.

This was 2 weeks post-radiation. Yum...it was really getting disgusting by this point. Oh, and have I mentioned how much this actually hurt? Yeah, there was PAIN. Kinda like you'd expect if you did take an iron to your skin. Only you have to imagine that through all the layers of skin. 

This was after we returned from Vegas, and after I went back to work, so sometime at the beginning of October, making this about 3 weeks post-radiation.

Haven't taken any pictures since, which is pretty funny. It's almost back to normal except for the fact that if you know to look for it, the entire area initially marked (see the first picture's sharpie markings) is a different color than the rest of my skin. Kind of a tan/dirt colored rectangle all around the left side of my chest, from sternum to armpit. Awesome.

A New Doctor and a New Plan

Because you can never have enough doctors on your team...or doctor visits on your schedule...I now have a new one: a surgeon specializing in gynecology. Yippee.

You see, the estrogen in my body is what is trying to kill me as it's giving the cancer something to feed on. I've been on a daily dose of Tamoxifen (anti-estrogen therapy) since August, but the oncologist has felt all along that it would be benefial to my long-term prognosis if I would consider having my ovaries and other parts removed. Initially, we agreed to discuss this issue further after radiation.

Well, guess what? Radiation has come and (thankfully) gone, so let's discuss it. To be honest, there's really not that much discussion that took place.
Me: "So, I need to have them out? Can I have it done before my calendar year out-of-pocket maximum expires? Yes? SOLD!" Don't need them, don't want them.

Yep, that was the end of that appointment. Didn't research the pros and cons, didn't look anything up on the Internet, nothing. Because frankly, I'm just exhausted, and maybe don't care as much as I should. I'm an expert patient now, so bring on every medical procedure that you can think of. Really. Bring. It. On.

I left with an appointment to meet with this new surgeon and off I went.

And I think that the appointment with this doctor took a grand total of 15 minutes.
Me: "So, what's involved? How soon can we do it?"
Dr: "Blah, blah, blah, robots...blah, blah, blah hospital. I've got an opening in November."

DONE and DONE! Another surgery on the books for the beginning of November. The pre-op appointment is this Friday (no, I have no idea why the pre-op appointment is so FAR in advance of the surgery, but that's not my job), so I'll hopefully have more details about what this entails.

Right now the biggest decision that I have to consider is how long I'm going to be out of work this time? Hussle back and salvage sick time for the spring? Or burn all the time and come back in the New Year refreshed, rested, and maybe healthy? Hmmmm...

Cancer Buddies

Funny story:
Teenage boy has had a "suspicious" mole on his cheek for, um, a few years. As per usual with our family, we have ignored it. Until now. After this summer, it really is looking stranger.

So, I make him an appointment at my dermatologist (who diagnosed the immediacy of having the strange spot on my foot removed), but I don't tell him. Because, let's be honest, we've worried enough about cancer in our house this year, teen boy especially (though he would NEVER admit it).

On the way to the doctor is when I actually tell him why we're going. And we had a pretty funny conversation. And I remembered that he really is a great kid who I love dearly, even if this past year has NOT been proof of that.

He decided that we were going to be "cancer buddies." Because he's as much doom and gloom as I am, and was sure that he was going to have skin cancer. I can't really recreate the conversation, but it reminded me why we get along so well...same grim sense of humor!

Oh, and it turns out, there was nothing to worry about. Mole was completely normal. So, he's not going to be my cancer buddy after all...THANK GOODNESS!

Cancer-versary

Today marks the anniversary of my cancer diagnosis; a day that completely upended my life...to say the least.

One year ago today I was sitting at my desk after school when my cell phone rang. It was my husband, telling me the doctor had called the house looking for me but wouldn't leave a message. (I didn't tell him at that moment, but that was actually the point that I knew it was bad news. When the doctor is trying to track you down IMMEDIATELY, it's really not a good thing). What felt like 5 seconds later, the surgeon was calling me with the news: cancer. And everything else she said after that word was, "blah, blah, blah...cancer...blah, blah, blah, surgery...blah, blah, blah." Seriously, it really was like the Charlie Brown teacher talking. You DO NOT hear anything after the "C" word.

I hung up the phone, sat at my desk for a moment, and then went home. Where I spent maybe 10 minutes trying to decide if I was going to tell Keith before or after he got into his GIANT truck and drove to referee a high school soccer game. I should've been nicer, but misery loves company, so I told him. And that was the beginning of our crazy cancer journey.  

I am still dealing with it every day and really not in the frame of mind to wax poetic about my thoughts.

But I have learned a lot in the last year: about myself, friends, family, what is important, what is NOT important...the list goes on.

What I want to say most importantly today is that I have learned that life's too short my friends. It really is. And you should be LIVING it...to the fullest...everyday. Always.

Be happy.

Say I love you.

Be thankful.

Don't take anything for granted.

Do what you love.

Don't wait for "someday."

Oh, and eat dessert first.

In Other News, I Went Back to Work...

...like an idiot.

Seriously, my brain is clearly not functioning properly when I thought that I could actually do this.

I went back to work on Wednesday and worked the remaining 3 days of the week. And then came home and died. And then today I died a little more. 

I told myself that I'd give it 5 full work days and then re-evaluate. Let me just say that after 2 hours, I knew it was a bad idea, but I will give it 5 full days before confirming my initial thoughts...which is that I'm an idiot.

What was fun:
Nothing.

Just kidding. 

It was great to see everyone. Or at least everyone that has made their way down to the library to say hello. I have not been venturing too far into the germ-infested building. (I did get a giant goody bag of supplies to keep away germs...so perfect!!!) Plus, I might walk too far and then die and not be able to get back to my desk. 

Talking to the kids about books has been fun. I've seen two-thirds of the school this week in the library and had fun talking about good books they might like. Plus, added bonus: giving a lesson to all in keeping one's germs to oneself. Seriously folks, middle school kids carry the plague, I'm sure of it. I'm working on getting spray-misters installed above the door so that they are showered with hand sanitizer every time they walk in the room. There has to be a way for this to work!

What was not fun:
All the things I've realized that I can't do anymore: stand up for any length of time; sit or stand in one position for very long; pick up just about anything; lift my arms above my shoulders; remember anything; and the list goes on and on.

SO. VERY. TIRED. Seriously. I wanted to die. It's possible that I did for a little bit today. I cannot imagine making it 5 days in a row ever again. (I'm beginning to be a little grateful for all these doctor's appointments that are going to break up the month).

I am in way more pain than I have been for awhile. While I expected the tired part (because, let's be honest, when haven't I been tired this past year?!), I'm not sure where this pain is coming from. And it hurts to move...all over...ugh.

I used to joke that I loved my job so much that they would have to throw me out of the building when I got old and they were tired of me. Yeah, that's not gonna be the case any more. I might love my job, and I might even be pretty good at it, but you know what? Entirely new outlook on life now. So many other things on the top of the list.

And So The Follow-up Appointments Begin...

First in a long line of follow-up appointments began today with a mammogram. Because, get this, I'm "past due for one." And they're "concerned." 

So, I actually tried not to laugh at the poor nurse assigned to tell me this. Because, I have to say, that I kind of think with all I've been through, I should get a pass on the mammogram for awhile. Or at least, get a pass on being berated for not scheduling the appointment.

To be fair, they did clarify that they only wanted to do a mammogram on the right breast (non-cancerous side), so I did see their point. Sort of. Really wasn't worth the effort to explain the joke. And this is definitely not the hill I am going to die on, so I'll save the energy for another battle.

And honestly I'm well past the point of caring about medical procedures, so why not have another one? Yippee!

It was quick and not-so-painless. Bonus points to me today however because I did NOT pass out (like I did last time). Long wait while the doctor looked at the images. I brought a book to keep me occupied (this is not my first rodeo). I will admit that there was this gnawing in the back of my head about what they might find, and I would not have been surprised to be told there was something. Because I'm just that lucky. 

But, miracle of miracles, they deemed the results "benign" or "clear" or whatever term you prefer. And they sent me on my way with a letter saying as much. (Of course, as I told Keith, I never really believe these machines any more since I've had more than one in the last year not actually give accurate results, but it's the best I'm going to get). 

In the next 30 or so days I have no fewer than 10-12 appointments/scans. Next up is a meet and greet with a new surgeon. Scans regarding parts with cancer to come soon...it takes time for radiation to dissipate and make the scan worthwhile. Fun times ahead! Stay tuned!

Vegas Vacation

In an attempt to reclaim a small piece of my soul, and to celebrate the end of almost one YEAR of treatments, hubby and I ran away to Vegas for a few days last week. Without the kids. I did nothing but eat, eat, sit in the sun, eat some more. Oh, and I got SICK! VERY, VERY SICK! So, at least one of the days was not any fun, and a lesson in the fact that compromised immune systems don't magically come back.

We broke the bank and chose Gordon Ramsay's Steakhouse has the "official" celebratory meal. Final bill could have been scarier, but we opted not to get the Hell's Kitchen tasting menu. I did get the life-changing dessert however. Looking back, I almost wish that I'd just had 12 of those. Seriously! Life-changing! Pictures below!

Here are some highlights of the sun, food, and relaxing that went on: