Saturday, March 30, 2013

A Busy Week!

WOW! A busy week...hardly time to get in a good nap, let alone post here. 

Here's what's been keeping me occupied:

(1) I agreed to record a webinar for the American Library Association (I do about 2 of these each year) on Tuesday. Luckily, this was an audio only webinar so I got to record it while sitting in bed, wearing my pajamas!

(2) The weather has been pretty decent so I've been trying to go walking. It has felt pretty good, though I think I killed the dog who is now limping after joining in the walk one day. Oh well...

(3) Discovered that the insurance may not be great but it does cover 42 massages/year. Oh, I promise you, I will be using all of those this year! Found a great place in Redmond, and it is wonderful to relax even if only for an hour.

(4) An award dinner on Thursday, where I was presented with a leadership award for my work with Pantry Packs. FUN evening. I had to give a speech, which I actually had to write down because chemo brain is making me STUPID and I knew that I'd forget important things that I wanted to say (like thanking my family). The night went well, I got to wear the Katy Perry wig, and I only spilled one drink (because  my hands are numb and it slipped out of my hands...honest, it was a diet Coke). Really impressive display of gracefulness! And I left the award there, so clearly chemo brain has kicked in to full gear!

(5) Student benefit for me on Friday night. So much fun! I seriously cannot even tell you how fun the evening was. Spending it with current and former students (and some brave parents and teachers) was a good way to end a chemo day. The talent on display was incredible...I am in awe, and grateful that they didn't ask me to sing (which would have caused everyone to run screaming from the building). These teens are really going places. Feeling so blessed to be surrounded with love and support. Cannot thank the girl organizing the event ENOUGH! She is amazing in her own right and I am so proud that one day, when she is ruling the world, I will be able to say, "I knew her when..." (BTW, if you were there and have any video of the incredible performances, PLEASE send them to me. I'd love to use them for upcoming Music Mondays. I wasn't close enough to get good video).

(6) Oh yeah, there was chemo on Friday. Round 16!!! Only four more weeks of chemo to go...glory, glory, hallelujah.

(7) Let's throw in everything else: lacrosse, lacrosse, science experiment, Keith reffing...oh, and NAPS! I am so tired!

Here's hoping for a calmer week coming up. Actually, I'm pretty sure that I overdid it this week and won't be upright for days, which is sad because there is some pretty glorious sunshine out there right now. 

Crap, I just realized that Easter is on Sunday and the bunny might not have anything to put in the you put the husband in charge of this project? Hmmm...not sure about that prospect. After all, he did get a tattoo the last time he was left to his own devices.

Tuesday, March 26, 2013

Hey, You, Reading This Blog...

Yes, that means you. We interrupt this blog for a brief announcement.

I just need a quick favor. "Follow" the blog (you'll see the link on the right-hand side of this blog). See, some day when this is all over, I'd love to pursue turning this blog into a book that can help others through the process. But I already know that I'd need to prove to any publisher that I already have readers (you!) that follow my journey and are interested in what I have to say. 

So, if you're so inclined, take a minute to "follow" (you can choose to be anonymous if you'd like). THANK YOU! And keep reading!

Friday, March 22, 2013

Students Organizing Benefit

Looking for something to do next Friday? Here's where I'll be. Some of my former students are organizing this event 3/29 from 7-9pm at the Old Fire House Teen Center in Redmond.

Now, fingers crossed that all will go well next week. I'm scheduled for chemo that day, but am hoping to cut back on the Benedryl so I can be there to see everyone...sporting the Katy Perry wig of course!

Be there!

Wednesday, March 20, 2013

I Can't Feel My Feet...

What week of chemo did I just finish? 14? Yeah, that sounds right. As I head into the last six weeks of chemo, I wish I could say that the process has gotten easier...or more fun...or become a smoother/faster process. Nope, nothing new on any of those fronts.

A couple of fun side effect "updates" though:

(1) Tastebuds: I have slllooooowwwwllly started to get some of my tastebuds back. Very few. I still can't eat anything that doesn't crunch, and most flavors are gone, but there are some that work so I don't feel like I want to kill people on a day to day basis anymore. I'm not kidding, having no tastebuds was the WORST side effect. You cannot imagine how much you stop caring about everything if you can't enjoy the food you are eating.

(2) Blood counts: White cell counts keep dropping. Now I am back to getting shots each week after chemo. At least they are a smaller dose than the original neulasta shots, so they don't have too many side effects. Just a general achy-ness for a day or so.

(3) Neuropathy: Yep, the slight tingling in my fingers and toes has gotten worse. I currently can't feel my hands, or feet, or lips, or face. Awesome. And my fingers can no longer tell the difference between textures. As in fuzzy wool sweater, jeans, skin, soft fleece blanket, computer all feels the same. Really fun trying to type this, by the way, when you can't really feel the amount of pressure you are putting on the keys. As far as the doc is concerned, this super cool side effect does not warrant much discussion as long as I can still tell the difference between hot and cold. I am trying to hold the numbness at bay now by downing large quantities of glutamine powder (recommended by chemo doc) mixed in my drinks twice/day. Yippee, one more vial/jar/bottle to add to the nightstand. 

Tuesday, March 19, 2013

My Husband Loses His MIND!

In what has been described by many as an "awwww, sweet" show of support, my husband got a TATTOO on Friday...while I was sleeping off the chemo. The same husband who I believe I've heard say, "I will never get a tattoo." 

I think it's possible being bald all these months has addled his brain. And he should clearly no longer be left alone to his own devices. And what the heck am I supposed to say to the 10 year old daughter who now wants a matching one?!

The tattoo is PINK...and HUGE...and admittedly pretty AWESOME.

Even though it is a grand gesture of support (and he wants it noted that nothing says, "I love you" like a tattoo), I'm still allowed to think he is insane!

Monday, March 18, 2013

Music Monday

I am taking Music Monday recommendations from all sources, so let me know if you have a suggestion! Today's song comes to you via a good friend. And a good choice too! 

Thursday, March 14, 2013

Rescuing the Sloth!

Admitting you have a problem is the first step, right?

I have become a serious sloth. Yes, I have a great excuse, but even the chemo doc says that if I don't do something to build up my red blood cell count now, I am going to regret it. Seriously, most days find me sitting down in the shower after a few minutes.

To attempt to reclaim my life, I decided a couple of weeks ago to start walking. It gets me out of the house and off the couch that has a spot for my ass permanently imprinted on it.

To accomplish this task, I enlisted some friends to force me to walk with them. It's going pretty well. They understand the rules: must be done during the school day because I usually need a nap by 3pm; and under no circumstances will there be walking at 6AM or they will no longer be my friend.

As you would expect in Seattle, there have been some rainy days (and a few that we have decided not to walk because being wet and cold might actually be worse for my health than sitting on my ass). But there have been a few gloriously sunny ones as well. FEELS. SO. GOOD. This is a photo of a recent outing, with my friend doing the 3Day (and all of her walking buddies). I only took a wrong turn once, but I didn't get us too lost, honest! And the sunshine was wonderful!

Thanks to all of you (and you know who you are) for getting me up and moving!

Monday, March 11, 2013

Music Monday

Today is all about just clapping and having a little fun...I love this group...and this song! And I need a little lighthearted fun right now...

Saturday, March 9, 2013

My Katy Perry Wig and I Make The Paper

Why yes, that is me rockin' my Katy Perry wig in the local paper! You have to check out the article from the most recent Redmond Reporter! Yes, it's my photo, but it also highlights some pretty amazing people and how they're helping out during this whole process. Great article!!

And if you get a hard copy of the actual paper could you save it for me? Thanks!

Friday, March 8, 2013

What Week Was This?

One of the hardest things about chemo is that you have to get up and get ready every week knowing what you are in for: a long day of BORING, being poked and prodded, and then all the icky side effects that are headed your way in the days to come. Weeks start to blend together and all look alike. 

Today is another chemo day, but I'm not really sure which one this is as I'm sitting in this chair. Blame it on chemo brain, blame it on the fact that I am completely over this whole process. I think this is week 13? Yeah, let's run with that..."Lucky 13" it is!

It's actually not a bad day, all things considered. 

(1) The view from the window is sunny (though with some encouragement from a friend I am going to start figuring out how to be outside in the sun while getting chemo. I think it might involve some kind of superhero battery backpack as the IV set-up requires electrical...or a REALLY long extension cord). 

(2) Keith is on his way back here with my lunch. I really should be a paid Subway endorser because that's all I eat.

(3) I actually LOST THREE POUNDS this week. See several of my previous posts for my issues with that. Now I have proof that it was the steroids. Yeah for week 2 without them!

Now, if only the port would cooperate and give up blood for the labs so we could get this process started, the day would be complete. This is the third week in a row that they've had issues with the port, so I fear what this means for future weeks. But, we'll think about that another time.

And I clearly might have to write a post about how to behave if you are a visitor in the hospital since there is a VERY ANNOYING GUY talking LOUDLY on his cell phone outside my infusion room. I appreciate that he moved away from his friend/family member's "room" when taking his "very important call." However, he moved right outside MY room (which, keep in mind, doesn't have a door) to talk...for a long time...and I have headphones on and can still hear him. I am considering running him over with my IV stand. Bad. Hospital. Etiquette. Monumentally Bad!

Monday, March 4, 2013

Music Monday

Okay, so I wasn't a huge fan of this song (yes, it's catchy and all, but whatever) until I saw them perform it on the Grammy's. Now, I just love the energy. It kind of makes me want to jump up and down and have fun! And a reminder to have fun surely isn't a bad thing!

Saturday, March 2, 2013

I Revolt...And Win The Battle

Yesterday was the 12th week of chemo! Eight more weeks to go! A small milestone to celebrate. (There are many more surgeries and treatments after chemo, but this is a start). However, it marked another milestone: I won a battle with the doctor!

It all started with the typical weigh-in...this week I gained FOUR MORE POUNDS...IN A WEEK. That's SEVEN pounds in TWO weeks for those of you keeping track, and 12+ pounds in the nine weeks I've been keeping track. That's 10% of my body weight!

Let's just say, I went CRAZY. As in every nurse at the check-in desk started laughing at my ranting. Here's the thing, don't keep weighing me every week (which implies this is an important thing to track) and then not expect me to notice the number on the scale. Four pounds in a week? How do you do that? 

My very loud rant at the scale (which was very humor-oriented, not screaming-scary-crazy person ranting), continued with the nurse assigned to me. Lucky her! Keith, the nurse, and myself did have a GREAT laugh over this. Especially the one question where she has to ask, "Is anything swollen?" Yes, apparently my ass is. She was laughing so hard, she couldn't continue the questionnaire...and decided she probably shouldn't write that down. (Though I did double-dog-dare her to). I blame the steroids for this weight gain and said I was THROUGH with them. The wonderful nurse said I was welcome to bring it up with the doctor (and wished me luck, because she knew this was a mighty impossible battle to win).

When the doctor walked in about 30 minutes later, we laughed that the nurses hadn't warned her to stay away. I semi-calmly voiced my concerns about the steroids and this crazy weight gain. I mentioned that I was going to have to start billing my insurance for new clothes because nothing fit anymore. She listened to my concerns, agreed that the steroids could be the cause, and then she looked at my chart. "Wow! You weren't kidding," she said with wide eyes. No, I wasn't joking. Thank you for recognizing that gaining four pounds in a week is concerning!

Long story short, I win! She agreed to drop the steroids from the pre-med infusion regimen! HALLELUJAH! Now, I will have to wait until Friday to see if it makes any difference. Fingers crossed...

(Also, I am composing a post soon about weight gain, breast cancer, and chemo because it is a dirty little secret that no one talks about. I think that people facing this diagnosis should be prepared for all the things that they will face).