Thursday, October 25, 2012

OCTOBER 25, 2012


Starting round two of Xeloda today.  I woke up in a good mood, and that was kind of tempered when I realized that I needed to start my chemo again today.

I know I can handle it....I know I can mitigate the side effects.  I just don't look forward to the low-level nausea, the general fatigue, and having to be super-conscious of when I'm eating, moisturizing my hands and feet (to ward off hand and foot syndrome), etc.  I've had a good break (if being on an antibiotic is a break), and I've been enjoying feeling good.

So, I'm hopeful that I can continue this trend.  We'll see.  I've got a busy couple of weeks coming up (well, months, really), so it's going to be up to me to make sure that I take care of myself in a way that will allow me to live life the way I want to.

Regardless, this is what I need to do to survive. This is what I need to do to make sure I'm here, to keep harassing you all.

It's all good.  It's a good life, and one I'm willing to fight for.

Here we go....

Comments:

Cameron VSJ said...

Hi,

I have a quick question about your blog. Could you email me when you get a chance?

Cameron
October 25, 2012 at 10:01 AM

Wednesday, October 24, 2012

OCTOBER 24, 2012


Yesterday, I had a kick-ass, amazing opportunity come my way that I couldn't pass up.  I got the chance to speak with Rodney Atkins, care of one of the local country radio stations.  :)

Long story short, I got a phone call yesterday morning, letting me know that Ben and Matt would be interviewing Rodney, and they wanted to connect up the two of us on the phone.  So, after some back and forth (and me rescheduling my doctor's appointment that I was about to walk into), 
here's the result.

As if I weren't already excited enough about November 3rd, now I've also had the chance to talk with Rodney.

You know what?  In spite of the shitty cancer.....I live a DAMN good life! 

Comments:

chaoticfamily said...

Wow quite the inspiring story. My Dad is almost 3 years in remission from stage 3 colorectal cancer. Will keep you in our thoughts.

Erinne
October 24, 2012 at 10:53 PM

Thursday, October 18, 2012

OCTOBER 18, 2012


Today was a day of mixed emotions.  As I said in my last post, I've been dealing with some things that I'm still working on.  These things have been weighing heavily on my mind as I work through them, and try to make a decision.  I'm not sure how this is all going to play out, but I know it will be fine.  I just know it.  Getting there - well, for me, that's always the journey.  We'll see if, eventually, I can get a stretch of smooth road.  Until then - buckle up.  Mama's got things to do....
*********************************************
This morning, I got news that I've been dreading, but I knew was coming.  Deputy Dan Grover, the gentleman that I met back in NY in June who was also battling stage 4 colon cancer, lost his battle early this morning.  I am just heartbroken for his wife and daughter.  He made sure to fight enough to be there for his wedding anniversary, and for his daughter's first (sigh) birthday.  I know that this was his goal.

My heart aches.

I hate hate hate that we lost another soul, a good man, a wonderful father and husband, to this disease.  I hate that his wife will have to tell Meeha about Dan, rather than their daughter getting to know her Daddy through experience.  It makes me want to fight against this disease that much more.

RIP, Deputy Grover.  We will continue to fight like hell for you, and in your memory.  Do what you have to do up there; we've got it down here.
*********************************************
I had blood drawn today in anticipation of my med-onc appointment tomorrow.  I've been anxious about this.  This is kind of (to me) a test of how I'm going to react to the Xeloda, especially because I've been off of it for two weeks (so I could battle this sinus infection).  I figured that, if I was not on chemo and my immune system was low/battling something else, this would be the time that the cancer would come back.

Ha.

CEA is at 1.3 - boo-yah!

That's down from 1.5 three weeks ago, and still within range enough that I think we can consider my CEA to be stable.

This was cause for wild celebration on my part, I can tell you that much.  I so needed confirmation that we are on the right path, and I so so so needed this good news today.  I can't tell you how welcome this news is.

I'm much less nervous about tomorrow's med-onc appointment now.  Going in, knowing what I'm up against - yeah.  That helps.

Will update again tomorrow.  For now - let's celebrate, people!  This is GOOD NEWS!!!!

Comments:


This is good news!
October 18, 2012 at 8:44 PM

Tuesday, October 16, 2012

OCTOBER 16, 2012


So, I'm still battling this sinus infection, which does not bode well for my upcoming med-onc appointment on Friday.  I know it's odd, but I'm so nervous about not being on chemo.  Who wants to be on chemo?  Me.  Well, I don't *want* to be on it, but you know what I mean.

I want to keep actively fighting.  If that's what going to keep me here on this earth, then dagnabit, I want the chemo.  (Yes, I totally just used the word dagnabit....isn't that awesome?)

We'll see what happens.  I'm not going to stress out about it...it won't help, and it won't change anything (other than to potentially make things worse), so it's not worth it.  Having said that, I'm being much more conscious about making sure the kids wash their hands when they come home from school, making sure I'm not around people that are sick, etc.

I'm interested in your feedback, though.  If you are a cancer survivor, have you/will you be getting the flu shot?  I've been a very staunch believer that it doesn't help, as the people that I've known that have gotten it either got sick from the shot, or got the flu.  No judging, no talking down a decision someone made....I'm looking for your reasons to either get or to not get the shot.

What else?  It's been a long week.  I've got a lot on my mind, and it's weighing heavily.  I am going to keep it inside, for now, as I need to talk some things through and make some decisions, but the basics of it all is that I've decided that certain things aren't working for me, and changes need to happen.  So, if I'm quiet, please don't think something is wrong.  Just trust that I'm working through some things.

This weekend, the kids and I had an amazing time.  We spent Saturday morning cleaning up the house (it is so much easier when we all do it together - they are such good helpers!), and then *finally* decorated for Halloween.  It isn't much, but we had so much fun deciding where a wall-hanging should go, as if the world would stop spinning is we made the wrong decision.  They painted the tiny pumpkins we bought them....holy moses, is that easier than carving pumpkins!  Much more fun, too, in my opinion.  Clean-up is easier, too.
Painting the pumpkins...
Julia had hers all painted (here), then decided to paint the whole thing black with purple faces.  


Final products - front....

And, back!  

We also worked on a pinterest project on Saturday afternoon, which is the four ghosts you see.  So easy to make - let me know if you want the instructions.  Or, go to my pinterest boards, and check out the Halloween one.  And, yes....I have a Mickey pumpkin light - what of it?  Did you think I'd have anything else?


Close-ups of our projects - the kids decided that two eyes ghosts were boring, so the only one with two eyes is the bottom picture, left hand side.  The ghosts in the top picture are all multi-ocular, as you can clearly see.  Jules made the one in the bottom picture, right-hand side with several "faces", so he can see all around  him.  :)  These kids make me laugh.  

We spent the rest of the afternoon running errands for Girl Scouts (among other things) and picking out Kevin's Halloween costume.  Julia is all set - she's going to be a geisha, care of my friend Akemi, who hooked Jules up with a beautiful yakata (which is a lighter-weight version of the kimono).  Kevin decided he was going to be a ninja, until we got to Target, and he decided on a Bakugan Drangonoid.  I'm not sure what it is, but he is super-stoked, so I'm not going to complain!  

Sunday, Kevin hung out with my dad (Levi was working all weekend), and Jules and I did some advocacy work for the Colon Cancer Alliance at the Women's Expo in downtown Phoenix.  It's an event that we've done for several years now, and while it's a lot of work, we really do believe that we reach several people, and that's what it's all about.  Many thanks to Kevin and Anne Bergersen for manning the table both days - they are tireless advocates, and inspirations to the rest of us.  

This week is back to a normal schedule - fall break is over for the schools, so we are back to choir practice, Girl Scouts meetings, etc.  It makes for a busy week, especially with being back at work full-time, but the kids and I are in a pretty good routine.  For now.  LOL!

Here's to a good rest of the week.  My car has to go back in for some work (again).....we think it might be the fuel pump.  *sigh*  I wish I could get rid of this one and get a newer vehicle, but we are so far upside down on this that there's no way to make that work.  So, we'll keep fixing this one up and run it into the ground.  Anyone want to buy me a newer car?  :)  

Two and a half weeks until Rodney!  I'll tell you, this has made me smile when I needed it, more than I can tell you.  I'm so excited - I hope I'm not getting my hopes up, but I'm really looking forward to the concert and to the meet-and-greet.  I hope I get a few minutes to chat with him, and to get some good pictures.  It's going to be more low-key than the Daughtry concert, so I need to keep that in mind.  But, I'm really thinking that because it's a smaller venue, it will be more intimate and we'll be able to enjoy it that much more.  Although, it will be hard to top the front-row experience....

Hmmmm......

Anyways, more later this week.  As I said, med-onc on Friday.  *fingers crossed*

Comments:

Akemiko said...

I dunno Michelle, I've gotten the flu shot some years, and not other years - I really didn't see a difference. I now get the shot every year because my mom is elderly, and I'd like to think that it does make a difference.
October 16, 2012 at 2:22 PM

Wednesday, October 10, 2012

OCTOBER 10, 2012


As I shift into this next phase in my fight for my life, I'm becoming more and more aware that life isn't going to take the same road it did during my last battle.  When I completed chemo in 2008, I was done.  I went into remission, and got back to living.  Normal meant something new, but I wasn't scheduling life around chemo any longer.  Yes, I had doctor's appointments and such to worry about, but for the most part, I was able to get on with my life.  I had to give myself a little leeway to recover, but I was able to live.

This time?  It's different.  I don't think I fully understood how tired I was going to be, or how hard everything would be while I am on oral chemo.  I want so badly to do everything.  I'm back at work full-time (which is exhausting), even though I'm able to work remote 3 days a week.  Levi is working a crazy amount of hours, and isn't much help at home, unfortunately.  The kids are busy with school and activities, which keeps me really busy all week long.  And, on the weekends, I'm doing my best to rest up and keep up.  Oh - and the worry about money, etc., is still there - the financial help others have given us has helped, but I'm paying out for the bills that have piled up, the oral chemo (and other meds to help with the side effects), etc., and need to figure out how to pay for everything.  And, with the new year fast approaching, I'm going to be responsible for the $8,000 out-of-pocket again.  Combine that with Christmas coming up, the increased costs associated with going back to work (daycare, fuel, etc.), it's just overwhelming and stressful.

*sigh*

I know I need to ask for help, but sometimes, all I need is for someone to realize that, even though I'm not visibly suffering from the effects of chemo, I'm still tired.  I just need someone else to recognize it.

Have you ever felt that asking for help is going to take you more energy than just doing it yourself?  That coordinating the assistance is harder than just doing whatever needs to be done?

Yup.  That's me right now.  It's not anything huge that I'm asking for; just a basic understanding and a few moments to have someone say, "Hey - I get it.  Let me take care of (laundry, dinner, house cleaning, transporting the kids, etc.) for you."

I don't mean to sound pitiful, and I'm sure as hell not expecting anything.  Please don't think that.  (Again, remember - this is my blog, and my venting point...)

Being on oral chemotherapy puts you in an interesting situation - you don't "look" sick.  My hair is growing back.  My Erbitux rash is going away (thankfully).  I'm not scheduling work or recreation around my chemo (and recovery from chemo).  I'm not nauseous (a lot, anyways), I'm not unconscious recovering from the chemo.  I look just like anyone else.

But, I'm tired.  This is still chemo.  I need to remember this, and I need to remind others of this.  I'm still recovering from 6 months of IV chemotherapy, and that's going to take a toll on my body.  In addition to this, I'm not battling this stupid sinus infection, and that's taking a LOT longer than I ever wanted/expected.  By the time 7pm comes around, I am done.  I don't want to cook, or clean up, or do laundry, or get the kids ready for bed, or (some days), even get myself ready for bed.  I just want to fall into my pillow and not wake up until my body says it's time.

Unfortunately, life doesn't allow for that.  I need to work, and I have a family to take care of.  Balancing everything is hard.  Balancing it with cancer and chemo?  Ridiculously difficult.

So, what to do about it?  I don't know.  Haven't figured that out yet.  I think, right now, just venting about it and putting words to it is a start.  Somehow, we'll figure things out.  I'll figure things out.  I'm sure this is just a momentary lapse, and I'll feel better once I get breakfast and start recovering more fully from this infection.

I do want to ask you something, though.  Please remember that, no matter what their outward appearance is, every single person has their own battles, whether you can see them or not.  You don't know what demons a person is facing, or what they are worrying about, or what is weighing heavily on their mind.  As you come across people in the course of a day, smile at them.  Ask them how their day is, and every once in a while, ask how you can help someone.  That one small gesture may not mean much to you, but it may mean the *world* to that other person.

Here's to a better day....just need to remember....Keep On Moving.  (Thanks, Rodney!)

Comments:

Natteringnic said...
I hear you, I hear you! No one knows what is going on in the person's life in front of you. I nearly lost it last month when a mother brought her kid in for an eye exam - despite the fact the child had been sent home from school vomiting. I wanted to leap across the desk and scream "My kid is having surgery and my Mom - who is battling cancer and has a weakened immune system - was supposed to visit this weekend. And you're knowingly bringing in the stomach flu??!!!!???!!" But then I reminded myself, it is not malicious on her front and she has no idea what is going on in my life. (Um, is this blog a place for you or me to vent...sorry about that!) As always, awesomely thought-provoking post. If I lived closer, I'd send J. over to do you laundry. (YOu don't want me doing your laundry...unless you're into wrinkles and creases...:) )
October 10, 2012 at 9:19 AM
Michelle
I hope you read this... One thing I learned was that I felt the same way and I was strong and did everything myself. I had a hard time with resentment later on. Why didn't anyone ask to take me to chemo or help me clean my house. They didn't ask because they didn't know how. After lots of conversations and a little therapy my family admitted that they wanted to help but didn't know how. They didn't want to imply I couldn't do it and NEEDED help. My advise to you is to ASK. They can't read your mind or hear your heart breaking. You need to reach out when you need help and ask others to do simple things for you that mean so much.
I know it is easier said than done but it does make a world of difference and you'll avoid the resentment I felt for a very long time. :)

Luv,
Laura
October 10, 2012 at 11:00 AM
Blogger Lisa said...

Oh man, same here! Last night I had a semi breakdown because I am so frustrated with my lask of being able to do what I need to do with the fatigue and my lovely numb feet and semi numb hands. It sucks! Hopefully today will be better for both of us. Hang in there.
October 11, 2012 at 8:10 AM

Monday, October 8, 2012

OCTOBER 8, 2012


Ok - I know it's been a while since a good update.  I have good reason, I promise.

Last week, I worked more hours than I expected, helping my boss out and trying to ease myself back into the hours, knowing that this week, I'd be starting back full-time.  I was also trying to get things done that I knew I wouldn't be able to get done this week, since I was going back to work.

I started Xeloda (someone asked - it's pronounced Ze-loe-da), and was dealing with trying to figure that out.  I've been tolerating it fairly well - as long as I make sure to eat several times each day (small meals, rather than three big meals), I'm able to keep the nausea to a minimum.  Other than that, it's just a matter of keeping my hands and feet moisturized.  So far.

I managed to come down with a sinus infection that kicked the crap out of me on Saturday and landed me in the IM clinic (basically, oncology urgent care) at CTCA on Sunday, and on antibiotics.

Yes, people - when I do it up, I do it right.  Now, if I could just do it without the cancer, I'd be kicking monkey *ss all over the place.  :)

So, I'll start with the illness.  Long story short, I ended up with a sinus infection this weekend.  The thought is that it may have originated as allergies, which kind of set up the perfect storm for an infection.  Levi and I spent a few hours yesterday at CTCA, talking with the PA and waiting on bloodwork.  The good news - my blood counts are all really good.  The bad news?  I am on antibiotics, and off the Xeloda.  They don't want me on both, since the Xeloda knocks my immune system down, and I need to fight off this infection right now.

*sigh*

But, I'm hopeful that I'll start feeling better in the next few days, and I'll be able to go back on chemo next weekend.  This seems to be pretty standard protocol, so I'm not too worried.  A little anxious about being off a new regiment, but I'll make it work.  Can't be on both, and with this infection migrating to my lungs, I need to get this taken care of before it becomes something more serious.

As I said, I start back at work full-time this week.  It's going to be a long week, what with me fighting off this infection and working 40 hours, but I'll make it work.  I'm working from home three days a week, so that should help.  I'm glad to be back, but a little nervous about how I'm going to handle it.  We'll see - I'm just going to have to learn to ask for help from the kids and from Levi, and train them.  :)

I do have some pretty amazing news that came to light last week.  First, I'll be traveling to Chicago at the end of this month...I've been asked to speak, from the patient perspective, at CTCA's big board meeting.  I'm so honored to have been asked, as I understand that only one patient speaks at each meeting.  They have a facility there in Chicago - they want to send me there, to speak?  Yikes!  I'm waiting for some information on flights, etc., but I have an idea of what I want to speak about.  I'm really excited to have this opportunity....so humbled.  It's just amazing.

My even bigger news?  Oh yes - this is definitely the highlight of my, well, month for sure.  Maybe several months?  Yes.  Bigger than Daughtry?  Hmmmm.....maybe.  We'll have to see how it goes....Daughtry was pretty epic.  The bar has been set pretty high...  :)

As you know, my fight song is "
If You're Going Through Hell" by Rodney Atkins.  This song came out when I was fighting this damn disease 4 1/2 years ago, and I'veblogged about it more than once.  It's one of those songs that you hear, it sticks with you, and it becomes a part of your soul.  This song plays when I most need to hear it; I know it sounds hokey and crazy, but I'm telling you, I know I'm on the right path when this song comes on.  It truly is my anthem, and pushes me when I most need it.

Well, since this song was released, I have wanted to meet the singer.  I wanted to have the chance to thank him for singing a song that has such an impact.  I wanted to let him know that his music has pushed someone he doesn't know to be a better person, and to keep fighting when all of the odds seem against them.  I wanted to let him know that, regardless of what happens to me, his song will always and forever be a part of my soul.  I love his music - it just seems to say what I'm feeling at that moment.  His passion for what he does and for his son come through in his music, and that's pretty special.  I don't think he takes his career for granted, and you have to appreciate that.

For the past couple of months, I've been following Rodney on facebook and Twitter.  I've been asking for months when he is returning to Phoenix....I was hoping that I might be able to meet him and finally thank him.  I'm not asking for hours with him - 60 seconds, and I'd be happy.  Just enough to say thanks, snap a picture, and walk away happy.

I have gotten some responses from "him" on Twitter....I know it's not him....no doubt, he has people that cover his fan pages for him.  I was still pretty happy about hearing back from someone representing him.  They've been actively responding to my posts about chemo, etc.  Just before my CT scan a few weeks ago, I tweeted (and cc'd him), saying I was going to keep on moving.  I got a response back - "Praying for a good report for you tomorrow Michelle".  W00t!

So, when I got good news, I tweeted him back, letting him know.  Got a response - "Awesome, Michelle!  That's what I'm talkin' about!"  Cool!  I don't think he knows who I am, but maybe someone that works for him does.

I found out last week that he's coming to town in November.  ACK!  So, I pinged him on Twitter, asking if meet-and-greets were available for purchase, since we needed to celebrate.  I got an almost-immediate response, putting me in touch with Hope.

Now, I didn't know who Hope was, if she knew who I was, etc.  It was a very odd email to write.  Took me a bit to compose it, and make sure it didn't sound pathetic, begging, etc.  I just wanted to find out if m&g tickets would be available for purchase, and how I could get them (and, why I wanted them so badly!).

Sparing you (and Hope) details, I now have 4 meet-and-greet tickets for November 3rd.  I finally, finally, FINALLY get to meet Rodney!  And, I get to now meet Hope, whom I have the utmost respect for and am so glad to consider a "virtual" friend..

Oh.  My.  God.

I am going to cry like a baby when I meet them.  I know it.  I'm already so emotional about this, and once the day gets here, I'm going to be like a little kid.  I'm already giddy with excitement.  I never, ever, in a million years, thought I would get this chance.  It's one of those pipe-dreams that you have, that maybe, in some distant, far-off time, will come true.

Dreams, my friends.....sometimes, they do come true.

Oh - the coolest thing?  Found out that Rodney runs his own Twitter page.  So, those words of encouragement and congrats?  Yeah - they were from him.  *big grin*

Also found out, through a friend back in NY, that she met him in June and asked him to get in touch with me.  And, he knew who I was.  *blink blink*  Um.....he knows who I am?

*gulp*

I know he's just a person, like you and me.  His job is music, and his tour is part of his job.  He has a son about Julia's age, his family, etc.  He's just a normal person.  But, he's "my" guy, who sings "my" song.  (I know I have no claim to him, or the song....let me live in my fantasy world...)  And, I get to thank him.  That's all I want to do.  I don't want to be stalker-y, or crazy fan lady, or anything like that.  I'm just so damn excited to finally thank him for helping me through the past four-and-a-half years, and for giving me my fight back when I needed it.

This is going to be such an un-freaking-believable way to celebrate making it through the past 6 months, and to start out my favorite time of year.  I'm only hoping that my enthusiasm doesn't scare Rodney, or Hope, away.  :)

This concert?  Oh yes - it will be epic.  And, memorable, for all parties.  As long as I can make it through meeting Hope and Rodney without acting like a blubbering fool, I'll be ok.

So, that's been my week.  How was yours?

Comments:

Tina said...
I am SOOO excited for you! I have tears and goosebumps! I know how much a song can mean to a person, and how it can get you through the toughest days. Can't wait to see the pictures and hear all about it!!
October 8, 2012 at 4:37 PM
Blogger Mrs. Buv said...
HOLY Excitement!!!!!!!!!!!!!!!!!!!!!!!!!! That IS awesome!!!!! You. Amaze. Me.
October 8, 2012 at 10:40 PM
Blogger Lisa said...

That is awesome!
October 10, 2012 at 7:19 AM

Tuesday, October 2, 2012