Thursday, November 28, 2013

In Which I am Thankful...To Be Here

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

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

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

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

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

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

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

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

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

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

Wednesday, November 27, 2013

In Which I am Thankful For...Being Taken Care of

Continuing my posts of gratitude today. I thought I would continue with some additional ways in which friends and family have taken care of us during this cancer journey.

Again, in no particular order, I will forever be grateful for:

  • 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!

Tuesday, November 26, 2013

In Which I am Thankful For...Friendship

In the spirit of Thanksgiving, I thought that I would take this week to offer up a few glimpses into all that I am grateful for this year.

Please don't think that this list is exhaustive or all-inclusive by any means, but just some highlights of my gratitude over the past year...and they are not in order of importance, just how my chemo-addled brain remembers them.

I thought that I'd start it off by expressing my gratitude for friends far and wide, in every meaning of the word (friend, neighbor, coworker, etc.) for these gestures of friendship:

  • 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...

Monday, November 25, 2013

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.

Monday, November 18, 2013

How I Am Now...

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

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

9 weeks after my last radiation treatment.

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

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

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

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

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

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

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

Monday, November 11, 2013

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...

Thursday, November 7, 2013

What Not To Do at Surgery...

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

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

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

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

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

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


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 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???!!!

Sunday, November 3, 2013

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...