radiation

Today we met with the radiation oncologist.  It was somewhat of a short visit, but informative.  He was a very nice guy and explained everything really well (not that I remembered everything as well as he explained it though).  So here is what will be happening.

My last chemo cycle will begin on October 12th, and about 3-4 weeks after that I will get a CAT scan to make a "map" of me to determine exactly where the radiation will be focused each time.  That mapping will take a week to 10 days, and then after that is completed radiation treatments will actually begin.  So, it will be mid-November at the earliest before treatments start, and we're still not sure if they will last for 6 or 7 weeks.  That will be determined by the mapping from the CAT scan.  And we may wait until after Thanksgiving at that point, just so that I can enjoy some normalcy over one of the holidays.  It all just depends on a few things that we need to discuss.

So all this time we've been thinking that the big treatments - surgery, chemo, radiation - would be finished by the end of the year, but that's looking uncertain now.  But that's okay.  It will still be over soon. 

Other than that, he explained that the treatments are everyday, Monday - Friday.  And that each time would take about 30 minutes at the most.  No surprises there.

Side effects most likely will be a sunburn-type of skin irritation and fatigue, both more likely to come at the end of the treatment period.  Again, things we had expected.

At one point he asked about my appetite. I said it was okay. I think what he heard was "I really haven't been eating much because my mouth and stomach are all messed up and it's too much trouble to try to fight it". Because he started telling me how they really don't want me to lose any weight right now, and how your body actually needs extra energy in order to heal. And how no one really ever gains weight while going through this, so I have a free ticket to eat whatever I want. Whatever sounds good. Whatever tastes good. McDonald's, whatever. I nodded and said okay that I would do that. Inside I felt guilty because I should have told him I threw nutrition out the window months ago when I started eating ice cream shakes for breakfast, lunch and dinner cause that's all that would go down and stay down :)  The funny thing is that I immediately got a craving for a bacon, egg and cheese biscuit from McDonald's.  And, yes, I ate potato chips and lil smokies for lunch.  See, I'm a great patient.

one off the to-do list

I like making lists.  Somehow it helps me to remember things if I write them down.  Possibly because I can actually look at the list and not rely on my memory?  Hmmmm.  Anyway, we, probably like most other people have an ongoing list of things that need to be done around the house.  I keep ours in a notebook, organized by room so that I can find it easily and add it to the honey-do list when I can (Brian LOVES that list).

One of the things that has been on the list for the kitchen ever since we moved in was to get crown moulding put on the top of the cabinets.  The builder wanted something like $900 to do it when we were building.  At least I think that's what it was - I do remember that it was a crazy amount of money for the one section of cabinets that you can see in the picture and then another 4 foot section above the refrigerator.

So I finally ordered the crown and even got a little crazy and ordered a piece for the bottom of the cabinets, too. (It has a name, but it eludes me at the moment).  That was about January.  Then a few weeks ago our friend, Tim, from church installed it for us.  I was so excited!!  It was fun watching it change and look totally different.  He did a great job (and he brought homemade toffee - yum!!).

But what I'm most excited about is that we get to cross it off the list - yay!!!  I know, I'm strange like that.  I get a lot of satisfaction from drawing that line of ink through all of those faded letters after 4 years, and I'm not afraid to admit it!

Happy 9th Birthday Elliott!!

Happy Birthday big guy!

9 years.

Hard to believe.

Love your sense of humor.

Love your creativity.

Love your caring heart.

Love your laughter.

Love you very very much!!

after round 5

Round 5 of chemo went well.  As always.  This time was a little more special, because we were able to celebrate one of the girls' last big chemo days!!!  So excited for her.  I will miss her being there to talk to, but glad that she is moving on to a more normal time in her life with fresh perspectives.

I've been tired last night, but not that big of a deal.  Am up getting a few things done this morning that have been bugging me around the house.  Glad for the quiet of the house.  I just need quiet sometimes.  Especially when I don't feel good. 

I can feel the side effects coming on already, but glad that they're not full-blown yet and still praying for them to be minimal.  No achiness from the Neulasta yet, but just can feel the upper GI and mouth ickiness coming.  Oh well.  Just a few days and it will be gone.  I'll keep eating while I can. 

Tomorrow is Elliott's birthday.  He is so excited!  We always have homemade buttermilk birthday pancakes on our birthdays around here, so I already have the ingredients and recipe all laid out for Brian.  I'm sure he'll be a great pancake chef!

My very good friend has had a flare up with Crohn's over the past few weeks.  I was finally able to see her yesterday during her second visit to the hospital.  She prefers to call it a "spa treatment".  I say we're going to have a real spa treatment very soon.  She's facing some tough decisions in her future and we just cried together, saying we're just too young for all of this.  Yet we know that God "knows the plans (He) has for (us).", whatever they may be.  He is the perfect healer and does everything in His time.  It's just hard for us to wait for Him :)  But I was reminded yesterday of how blessed I am to have such strong and Godly women in my life.  Ones that I know aren't just going to try to sugar coat everything (although that is nice!), but are going to, in some way, remind me of who is in control, during trials and during the good times, and not let me lose sight of that.  Thank you ladies!!

bubble letters

This brought a smile to my face this afternoon as I went through Ethan's binder from school.  This is the first time I've seen him be creative with his lettering.  I remember Elliott wanted to write in bubble letters all.the.time. in first grade.  I remember his teacher mentioning to us that we really needed to encourage him to use bubble letters sparingly since it was causing him to slow down in getting his work done.  It must have been a fleeting phase since he didn't have the desire to bubble letter every single thing in 2nd grade, so I had kind of forgotten about it. 

So this brought back a lot of memories this afternoon, and also made me excited that Ethan was being creative on his own.  I doubt that he remembers Elliott's bubble letters phase, so he either came up with this on his own or saw it on a friend's paper.  I miss the days when they both wanted to sit with me and create things.  They still do every once in a while.  Sometimes when I'm in the office they even come up to me and ask if they can make something with the paper on my desk (gladly since I never use it to scrapbook anymore).  But they much prefer playing catch or soccer or riding bikes or playing a video game or Legos.  I guess they're just creative in different ways now - building Lego creations, writing books, creating an entire scenario with Imaginext.  I just miss the construction paper and paint days :(

five

Round 5 of chemo is coming up on Wednesday.  Yay!!  That means, after this one, just one more round to go.  So looking forward to that.  I will not be ditching this place quite yet, though.

My last round of chemo is October 12th, but radiation will begin 3-4 weeks after that and last for 6-7 weeks.  And I will continue to go there to get the Herceptin every 3 weeks until July 2012.  So the hospital and I will still be good friends for a while.

Thankfully the radiation and the Herceptin are both pretty much free of side effects!  Speaking of side effects, this last round seemed to be better.  The nausea and flu-like symptoms didn't seem quite as bad as before.  The really awful not being able to eat anything didn't seem to last as long either.  Of course, I do get tired of eating this....

There are several days the week after chemo when something very smooth is all that my mouth can handle.  Which usually means this broccoli cheddar soup (I wish the broccoli werent' in it) and ice cream or ice pops or something like Carnation Instant Breakfast or Ensure.  It gets old, but at least there are a few choices of what to eat.

So I'm praying that the side effects are minimal this time too.  I've noticed that I start getting anxious about it about Sunday or Monday, knowing what's coming.  So here I am, being anxious about it already.  I'm just ready for the whole chemo thing to be over.  I do still enjoy seeing the girls at the infusion room, but I definitely do not look forward to going as much as I used to.  I am so thankful that God placed each one of them there on Wednesdays because I'm pretty sure I would just want to stay home if they weren't there.  I'm ready to move on to the radiation part and to start a new year just shortly after that ends.  One thing at a time though.

music and tears

There is a worship song that I really love.  Sometimes I like the words more than the music.  Other times I like the music more than the words.  But usually if I really like a song it's because I like both the words and the music.  I know....this is a really new idea, huh?

Anyway, we sang this song at church yesterday.  Sometimes when the band starts playing I know instantly that it's a song that I like, but I cannot for the life of me remember the words.  And even when we start singing and the words are up on the screen I can't remember which words will come next.  And it REALLY bugs me when I don't know the name of the song but know that I really like it (I know I'm weird like that), but that's what Google is for, right?

So that's what happened yesterday.  But with this song, which we've sang countless times, I didn't really consciously know what words were coming next but they just came to me as the song went on.  Does that ever happen to anyone else?  It happens to me a lot.  Is it just me?  Am I just weird about that too?  Of course, the words are on the screen, so that helps when my subconscious fails me :)

But we got to these words and I started crying buckets.....

Everlasting, Your light will shine when all else fades

Never ending, Your glory goes beyond all fame

 

Now just to set the stage here I have to tell you that, of course, it would have to be a day when Brian was working, so my friend, Lisa, saw me sitting alone and came to sit with me.  I'm always cold in church so I was wearing a t-shirt with a cardigan over it and a belt around the cardigan.  Of course today it wasn't cold - or I was having a hot flash (thank you chemo drugs), not sure which, but it was hot in there.  About the second song into the worship service, I was sweating and kept telling myself to just relax and it would go away, but no.  I was trying to avoid the inevitable because to get the sweater off I would have to take the belt off and that, for some reason, was totally embarrassing to me.  But the sweating wouldn't stop so I had to do it.  I tried to do it fast so no one would notice.  I'm sure it worked :)  I apologized to the friends behind me (luckily they are good friends and would only tease me about it I'm sure) and to Lisa.  So now I've shed some clothes and am currently crying buckets.  I'm sure that as my tears kept coming she was regretting her choice of seating as she probably thought I was going to flood us right out of the sanctuary!  The Taxotere (one of the chemo drugs) makes my eyes water almost constantly anyway, so once a single tear escaped there was no stopping the waterworks.  Ugh!  I was so thankful that it was toward the end of service so that I didn't have to cry all through the message and everything.   And I was also thankful that most everyone else started tearing up not long after as we said goodbye to our woship leader from the past several years - at least I felt that my tear-stained face would blend in with everyone else's at that point. 
 
It was the "Your light will shine when all else fades" part that got me.  Even though I don't feel like things are fading so fast for me anymore, they did just a few short months ago.  When we were hit with "you have cancer" we didn't know what was next.  We didn't know exactly what that meant for our future.  We were scared.  We were left wondering, most days, "what's going to happen?" There were questions left unanswered after each biopsy, after the MRI, after each surgery.  Each one was crucial to determining what we were dealing with and it made our heads spin awaiting the answers that we were looking for.  But through all of that, there was also a peace, knowing that our God is constant.  That He knew the answers and no matter what they were, that He had a plan for us and He was still in control.  His light was shining for us to get us through this.   Yes we were scared.  Yes we asked why.  Yes we were upset.  Yes we cried.  Yes we wanted it all to end.  But at the end of the day we knew that there was nothing we could do.  But we knew that God was in control and all we needed to do was trust Him.  And yes, that is hard too.  I struggle with that daily.  I'm a fixer.  I want to fix things.  For me, my family, my friends.  I can't.  I have learned through this what it truly feels like to fully trust God.  I really thought He could have used something else to teach me, but I won't question His methods of choice :) 
 
As I sang the song, I wasn't only crying for myself, though.  I was thinking of certain friends and family who also feel like everything is fading away right now.  I hope that they feel His light, too.
 
Oh, just in case it bugs anyone else, the song in "From the Inside Out" by Hillsong United.  Thank you Google.