Friday Five

It has been a crazy week here in Seattle with almost everything being Super Bowl-related. It's quite awesome for this sorta Seattle native (I've lived here since I was 10, so that has to count, right?) and self-confessed sports junkie. Very exciting! Go Hawks!

Here's the 5 this week:

1. MONDAY SUCKED! TREMENDOUSLY! WORST EXPERIENCE EVER AT A DOCTOR'S OFFICE! And I thought I had been screwed over all the ways possible by the medical profession. I was wrong. Because I posted a cryptic message on Facebook right after it happened which led everyone to thinking that I had received bad news, I will attempt to briefly make a long story short, here goes:
I have, all along, been going to the Seattle Cancer Care Alliance facility at Evergreen Hospital. I LOVE everyone there. However, being in desperate need of psychiatric help for my PTSD, I had to schedule an appointment at the SCCA facility on Lake Union as they do not offer those services at Evergreen Hospital. It was my first (and last) time in this office. So many things about the whole experience made me twitch. But the reason I got so irate is really long and convoluted.
Had appointment with a doctor there at 1pm.
Checked in at 1pm. They page the doctor.
Sat down in ENORMOUS waiting room, surrounded by signs that say, "If you haven't been called in 15 minutes after checking in, please check in again."
1:15pm goes by, but I don't want to be that person.
1:30pm: I check in again. And point out that I have to leave at 2:00 in order to pick up my kids from school. They page the doctor again.
1:45pm goes by...now I'm mad.
2:00pm: I go check in again (for the 3rd time). This time however, all I want is a manager to talk to and to make sure that I NEVER get charged for this visit. And to point out that I just took 3 hours off without pay and have nothing to show for it. They go find a manager and page the doctor again.
2:02pm: a very young, and clearly not well-versed in how to deal with patients, gal comes flitting to the desk and says, with a slight giggle, "Oh, Dr. Chen? He's not here today."
And then I go crazy!  
So, the doctor was not even at work today? And people knew this? And no one called me? Canceled my appointment? Told me one of the 3 times I checked in? How long would I have sat there? Does the guy have a 2:00 appointment waiting in the waiting room also?
So, the gal they finally send out to talk to me is GREAT. And bursts out into tears with how sad she is for what has happened. And is a cancer survivor herself. Which is a good thing she was the one sent to deal with us because she actually understood my frustration.
By the time I get home, I have 3 messages from different people apologizing for the day. One offers to send me a form so I can apply for reimbursement of my time and expenses (never seen that before). We'll see.

Long story, sorry. Cupcakes made everything better. Keith smartly drove directly from this fiasco to the cupcake store. I had 2 for dinner and took a 4 hour nap and the world was bearable again. 
Seriously folks, probably not best to make the already unstable patient that much more crazy. Just sayin'...

2. I was watching the Grammy's and realized that Cyndi Lauper and I now have the same hair color (or at least VERY close). Wow! Growing up in the Cyndi Lauper era, I have to admit that's a sentence I never thought I'd write.

3. The hospital that was suing us for our minimal outstanding bill ($800...which in the grand scheme of things is minuscule compared to all the $$ that we owe), which they stopped billing us for so how were we supposed to know we hadn't paid it off (but that's a whole other discussion), just garnished my paycheck for $1,300. Awesome. Don't even get me started. Makes me want to become a patient advocate so that others will not get screwed the way we have.

4. It's been a long, hard year for everyone here in the Yusko clan. I try really hard not to diminish all that the rest of the family went through even though my year has been pretty "me" focused. Teenage boy did not have the best year by any stretch of the imagination, and there have been many days that I considered selling him to the highest bidder. But then I realize that he is so much like me...and I appreciate the fact that he can ALWAYS make me laugh. Whatever the situation. I am so glad that no one has lost their sense of humor in this family, especially him. So many times this week I have laughed because of him. Thank you.

5. I could never begin to repay the kindnesses shown to me and my family this past year and a half. NEVER. Can't even imagine trying. So, when a friend posted this "Pay it Forward" Challenge on her Facebook page last week, I jumped at the chance to participate. So, instead of paying it back, I'm going to pay it forward this year! (And since the concept comes, I think, from one of my favorite books, I really love this movement).


Pay-it-Forward initiative: The first five (I'm actually going to do 10) people who comment on this post/Facebook post/email me with "I'm in", will receive a surprise from me at some point in this calendar year - anything from a book, a ticket, a visit, something homegrown or made, a postcard, absolutely any surprise! There will be no warning and it will happen when the mood comes over me and I find something that I believe would suit you and make you happy. These five (10) people must make the same offer in their Facebook status and distribute their own joy. Simply copy this text onto your profile (and again, you only have to do five, but I wanted to do 10). 

I'm really looking forward to doing this! Cannot wait to see who's in it with me.

And a bonus:
6. I hit the "Register Now" button for the Iron Girl Triathlon in August. Yikes! Who's with me??? Who's going to teach me how to swim? Yeah, that's kind of going to be a problem, but one I'm willing to overcome. So real now...no turning back!

Here's a video to get me inspired:

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!

The New and Improved Me

I realized the other day (or maybe a month ago and I immediately forgot again until just the other day) that I had only posted recent pictures pics of the "new me" on my Facebook page.

So, I thought I would post a few here to keep you updated on what I'm looking like.



(1) What my nails look like still if I let them grow out. I'm hoping that you can tell from this picture how the longer they get, the less they are attached. So then I have to cut them short...and then when they grow out the process starts all over again. So much for that career as a hand  model.



(2) The Sharpie drawing all over me for radiation simulation. The blue dashes mark the entire area that is radiated (it goes from sternum to armpit, collar bone to below my left breast). The black dot in the middle of the "cross" that you can see is a permanent tattoo...and there's a matching one in my armpit. Damn. I was really hoping for something much cooler. At least an "X" marks the spot kind of tattoo. That beautiful scar that you can see is my surgery scar...about half of it. And there's a matching one of those in my armpit also. 



(3) The new me, with my awesome pixie haircut. When  your hair initially comes in after chemo it's a combination of straw and cat hair. I'm not sure how else to describe it, but it HAD to come off almost immediately. Thank goodness for friends who are hairstylists! Next stop, maybe some color because this current one is all kinds of NOT ME. I'm thinking purple...or Katy Perry blue.

Why Don't They Tell You These Things?

Another in a long list of things that would be GREAT if they told you up front: my hair is starting to grow back. Which I was told wouldn't happen until well after chemo had ended. 

So, when I have to shave my legs on Sunday...and notice that there is slightly more hair on my head on Monday morning than there was the day before...I do what most people in my situation would do. I FREAK OUT! Because surely this means that the CHEMO ISN'T WORKING, right?! 

MAJOR freaking out going on here over the past few days. I've decided that all hope is lost and started considering plans that I should be making. Seriously, it's a little scary to think that all this time and effort I've put in to something that has made me feel like crap and now might not have worked. UGH!

Well, I broke my own "don't look up anything on the Internet" rule (seriously, it is a good one because the stuff you find online about cancer is CRAZY talk for the most part. And can be confusing and contradicting). This morning I typed in "hair growing back during chemo" and I discovered a whole host of women asking the same thing. Because we're all freaking out, for obvious reasons. Because they tell you your hair WON'T grow back until chemo is done. From what I can tell, every single one of them on the WebMD and BreastCancer.org blogs about this topic were all on Taxol, and all had 4 weeks left to go when their hair started growing back in small amounts. (All still had their eyebrows and eyelashes falling out though, which just doesn't make any sense, but is exactly what is happening to me).

Imagine that! That's me. 16 weeks in, 8 of them Taxol, 4 weeks of Taxol to go...presto.

At least I can breathe a small sigh of relief, right? I won't die before my next treatment. Or make myself crazy imagining the worst. Is it really too much to ask for someone to type at the bottom of the pamphlets, "Hey, don't worry if your hair does start to grow back when you have four weeks left to go. It happens...don't freak out. The chemo is still working."

Bald is Beautiful...But Wigs Are Fun!

So, I've set this to post while I'm being run over by what I hope isn't that big of a truck this weekend. But since I'll be down for the count, I thought I would post something fun instead: WIGS!

I have been touting the purchase of my Katy Perry wig since Thanksgiving, but I have been waiting for a special occasion to show it off. Well, the hair is officially gone, so now is the time. Here are the three wigs that I have found so far:

Me as Katy Perry: The girl child is desperate for this one, and has in fact stolen it already for a "wacky tacky" dance at school this weekend. Regardless of what anyone else thinks, this is my favorite. Contemplating wearing it for next year's school yearbook photo...hmmmm...



My Merida wig, only in a slightly different shade. It still needs a bang trim, but at least you get the idea of the color and curls.

And here's the "normal" hair that will satisfy the teen boy who's scared to be seen with his mother dressed up as a rock star that's probably two decades younger than me in real life. I got this one mainly for it's cool color (called caramel by the daughter who is becoming my stylist), and the fact that I can wear it up and in ponytails.

Still holding out hope for an emerald green wig...stay tuned!

The Evolution of Hair

Last night was buzz cut night in the Yusko household. I think the key was when the hair was falling into the fettuccine while I was cooking. Time to get rid of the little that was left. Well, sort of. While Keith stepped up to the challenge and razored his right off (matching my dad, who beat us all to the punch and did it this past weekend), I simply buzzed mine super short. To me, the razor is just a little too scary on my poor defenseless scalp. As you can see below though, I've got enough bald spots to qualify. I'm just going to let the rest fall out as it will this week.

Before I start posting pictures of me in the crazy wigs, I thought I would post some pictures I'm calling "The Evolution of Hair"...at least, my hair:
(1) When it was long and curly (I blame the kids for this curl, by the way. It was never this curly until after I had kids...grrr. I should also blame them for the gray hair, too...which you won't see in any of these pictures thanks to the wonders of haircolor). Never as long or as beautiful as I wanted it though.

(2) In April of this year, I went short. Now, somewhere in between these two, I had it longer and straight, but I can't seem to find any picture where I wasn't wearing it up in a clip. 

(3) After Thanksgiving, I chopped it short so that I wouldn't have to deal with clumps of longer hair falling out.

(4) New Year's Eve, what I lovingly refer to as the "Les Mis Look." Or a refugee..

(5) January 7, 2013: The cancer patient buzz...or GI Jane, as we like to call it. Let me just say that IT'S COLD AND WET outside, and WOW! does this hair style (if you can call it that) make your head feel it!

In Which I Feel Like a Cancer Patient...and Look Like a Refugee

Today was a return trip to the doctor's for blood draws and lab work. Fun times, I promise. It means another poke or two with a sharp stick (okay, it's a needle), a 30-45 minute wait while they process the results, and at least three different people asking me my birth date. Yep, it's definitely fun not to be missed. But everything comes back "fine," which is code for "not good but you're not going to die" so I'm free to go home.

Today, we are headed to look for more wigs, and then to Target to get my next round of meds and do some shopping. It's just a party a minute when you're hanging out with me these days!

Wig shopping was pretty hilarious. We end up at a costume shop in a sketchy location that turned out to be pretty amazing. And they had lots of crazy color choices, which is what I wanted. The problem with traditional "cancer patient" wig places is that they only have "normal hair" wig options, and that's really not what I want. So, I spent a good 30 minutes trying on everything in every size and color. Green, purple, black, even a SCARY red one (like fire engine red) which Keith thought would look good (it didn't!). The purple one was just not the color I wanted...too much lavender, making me look old...no thanks! The green one was beautiful, but had a permanent zigzag part down the center which was probably designed to go with an alien costume, but just didn't work for me. (And I'm kind of bummed, because it was pretty cool). Black, orange, yellow, lime green...all clearly "no go's" because they make me look sicker than I already feel. 

Then the husband redeemed himself after the red wig when he found my Merida wig. Yes, the cartoon girl from Brave. Even before this diagnosis, I have wanted her hair. That's right, I'm jealous of a cartoon Disney princess, I can admit it. Well, orange isn't really the color for me, so he found the wig in a beautiful auburny-purple color (if I drank wine, I'm sure I would know which red wine it looks most like). And it's long, and curly, and I love it. So does the girl child, by the way. And then I found another wig, which should satisfy the "aren't you getting normal hair" member of the family: long, straight, and a caramel color (according to the daughter). So, now there's three wigs when you add in the Katy Perry blue wig. Should be fun! Though I still kinda want that green one...

After the wigs, we stopped at Target to get my next round of meds (the one that you have to take during chemo...the pharmacy doesn't usually stock it, so you have to order ahead). These meds are like gold, so I have to make sure that I have them in time for the next round of chemo. And we have to get some basic stuff, so we're wandering around the aisles. And this is when I realize that I have felt pretty bad all day: dizzy, out of breath, tired. When we're walking around, I can't even make decisions about what to grab off the shelf because I do not actually care. I really and truly have no energy left to care. I have hit the wall. 

Today is the first day that I've felt like a cancer patient. Really and truly felt like a sick person walking around. I'm sure part of it is this out of breath thing which is new. I'm also sure it has a little to do with the fact that I look like a refugee from a third world concentration camp. We laugh about the stripes and bald spots on my head where my hair has fallen out. There is little hair left now, but it is so cold outside that I haven't shaved it all off yet. (That'll probably happen by Monday).

Home for a nap! I didn't even help Keith bring any of the bags in the house or put anything away. Completely passed out on the couch. And I do not even feel bad about it!

The Les Mis Look

My head has been tingling all weekend...and as much as I'm trying to deny it, I know what this means.

I've been warned that Day 18 is the day when your hair starts falling out...and that is today. Happy New Year to me...ha!

Sure enough, if you run a hand through my hair, you will come away with a handful of it. Great.

Taking a shower today pretty much convinces me that this is the end of my hair. HANDFULS of wispy strands. And when I dry it, the towel is COVERED in it. No more denial. And I wish I could say that I handled this well, but I didn't. A good cry was had in the shower. Which is pretty ridiculous because I HATE my hair, always have. Seriously. It's thin, gray, sort of curly, and just will not ever do what I want it to do. So why am I so sad about this?

After my brief sob-fest, I make Keith come upstairs and cut my hair. No, not completely bald (because it's WINTER and COLD and I'm trying to hold onto some hair as long as possible), but SHORT. Like Anne Hathaway in Les Mis short. And the cutting process actually looked a little like the scene from the movie trailer, only with clippers. It was quite the funny experience. And I promise, I will be paying him back the favor...I think it's time for the family to go bald! Who's with me?

Katy Perry wig will be making an appearance by week's end, I'm sure. Stay tuned!

Haircut!

In anticipation of being bald, I decided to cut my hair short now, so  that when it starts to fall out, it won't feel that painful. 

Let's be honest, I have never had "good" hair, or at least hair that I want. I've got super thin hair, making long flowing locks nearly impossible because it starts to break once it gets past my shoulders. VERY GRAY, for a very long time now, making it so I had to start coloring it. And it went curly on me sometime between the births of my two children. I'm pretty sure that is punishment for all those bad 80's perms I had done to try and make my wispy thin hair look like it had some "body." Ugh!

Really and truly, there are few things that I actually would like to change about myself. A beautiful singing voice and great hair are about it. I would honestly kill for Kate Beckinsale hair. Well, be careful what you wish for I guess. 

Here's my opportunity to have whatever hair I want, albeit via a wig. However, I've decided that if I'm going to wear a wig, it's going to look like a wig. I've already purchased a Katy Perry BLUE one, and am on the lookout for green, purple, and black ones. (Not crappy costume wigs mind you, I'm out for ones that will last). And I REALLY want hair like Merida from "Brave." The teenager and the husband are appalled that I'm not going to have "normal" hair, but I really want to have fun with this. (Pictures of blue wig will appear soon...stay tuned).

My fear now is that since my hair changed dramatically after giving birth, it is going to grow in completely different after chemo. Please God, just don't let it come back all gray and frizzy...