Monday, December 30, 2013

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.

Monday, December 16, 2013

Friday, December 13, 2013

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!

Monday, December 9, 2013

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...

Monday, December 2, 2013

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!