Thursday, May 31, 2012

homecoming

 Last night we got to go to the airport to pick up my bother who has been serving an LDS mission in Spain for the past two years.  When he left we had a special hug/moment where I wondered 'What could happen here in the next two years?'  I was very glad to see him again.

Mark has always said he doesn't like drama.  Oh boy.  Welcome home, buddy.


I think....not.

A big cheer as we spot him coming off the escalator.  We had a little mustache theme going on.

A lot of little nephew excited to see Uncle Mark!




Monday, May 28, 2012

if wishes were fishes

Happy to be home.

One week and I missed James taking the stage and teaching stories about the stars.  I missed the piano recital we have been working on for months.  I missed Sam (who always puts up a good fight) playing his pieces perfectly.  I missed babying Luke while he stayed home with strep.  I missed them dancing in the schools' dance festival.  I missed visiting my best friend in the hospital after having her fourth child.  I missed the opening of the peonies in the front yard.

These treatments have just about killed me, but so has missing out on everything.  I am so stinking sick of it! 

I pulled up from the hospital to a very special welcome home....

My sisters and friends, at it again.

All over the house balloons with wishes from family and friends tied to them.


Tonight we brought them outside for a launch.



We couldn't get Ginger out of attack mode.


We watched the wishes mingle with the moon.

Friday, May 25, 2012

IL2 - Round 6 - Update 3

Alisa never ceases to amaze.

After her 7th dose (and about 20 pounds of water) she decided to do one more.  A last ditch effort to kill the cancer with this treatment.  The doctors gave her a chance to be done, but she just kept on going.

It was a pretty rough night, she received her 8th dose at about midnight.  Alisa met somone else doing IL2 on this floor and her husband is only getting about 3 doses per week.  He is older so maybe it isn't fair to compare, but...Alisa rocks.

We are going to be home this evening.  The hardest of the treatments is over. 

Time for summer vacation.

Thursday, May 24, 2012

IL2 - Round 6 - Update 2

Alisa just received her last dose of IL2 (There is a slim chance she gets one more, but not likely).

She had a pretty rough night last night after her 6th dose and so we are pretty confident this will be her last.

We are excited to have this treatment done.  Although we are not sure what the future holds.  We will scan again at the beginning of July and should have an idea of what our next steps are.

Until then we plan on enjoying the summer break (last day of school is next Thursday.)

Tuesday, May 22, 2012

IL2 - Round 6 - Update 1

Another good start to the week.

Alisa was completely out yesterday.  I don't think we said 5 words to each other since she started getting medicated.  She did throw up (before getting any medication), she gets sick just thinking about the hospital.

She is about ready to get her 4th dose.  Hoping to get to 7 this week.

Our highlight of the week was this little message on the freeway driving in.

Thanks!


Wednesday, May 16, 2012

I wrote the post below on Sunday.  I have been wanting to edit it and make it say what I felt that day.  I got lazy and decided to settle for something that was grammatically correct.  But even that has seemed too much, and now I just need to move on and put it out there and hope you can feel what I was trying to say.  I meant to write it louder and sweeter, but I need to move on.

The water is slowly making its exit.  I went to the Dr. today to have my blood work checked and plan a little into the future.  I have felt one of the five target tumors disappear completely, anther shrink to half its size, and the other three seem to have not changed.  I haven't felt anything new.

I have one more week of IL-2 starting Monday.  It is my last shot.  We will scan early July (as long as we don't feel lots of new growth before then) and hope that my immune system figures something out here.  Immuontherapies (like IL-2) continue to work after they are administered, so we will see what we can pull off.  If the IL-2 didn't do the trick we will switch to a trial or IPI in July. 

I am feeling great today.  I have enjoyed doing things I used to do (laundry, dishes, yard work).  I am excited that things will get to back to normal in June.  I am glad, yet anxious, that we are putting the hardest treatments behind me. 

I still find myself hoping and believing that the IL-2 will cure me.  My body has responded.  It's fighting battles everyday with the evil cancer.  And the boys pray at night "Bless that the treatments will work and mom's cancer will go away." Can it just be that easy, please?


Sunday, May 13, 2012

the old magic that roars

“Shall I reveal what really happened that night thirteen years ago?” asks Voldemort. “Shall I divulge how I truly lost my powers? It was love. You see, when dear, sweet Lily Potter gave her life for her only son, she provided the ultimate protection. I could not touch him. It was old magic—something I should have foreseen.”   JK Rowling

*****

This morning I woke up to an echo from the ROAR that screamed through my fingertips last mothers day.  My three lovely boys burst into my room, proud as peacocks, with breakfast for me made only by them.

One of them might have asked me last night to get the pancake recipe out for him because "he might be hungry for pancakes tomorrow."  Two of them were nursing burns from the pan.  All three of them smiled as they delivered the meal and their sweet cards.

Have I told you I love being a mother?  Why?  Because as confused as I seem about life and purposes, and why and when and who and how...when you are diagnosed with a life threatening illness-or maybe something else big startles you, or you may be lucky enough to happen by it slowly and gently-but when you are awakened, you realize what you want out of life.  In life.  Because of life.  You know what you want by the time you die.  You figure it out quickly in the face of death.

That is one blessing of cancer. 

It has a way of teaching you what is important.  Or maybe it just reminds you.  Because as soon as you get diagnosed, or soon after, you know, or maybe you always have, you just haven't put everything together.

I have a Celine Dion song on my playlist that I found this year when I was training for my race.  I ran to it when I felt like slowing down.  It does not have a fast beat, but I couldn't help but run with all my heart with it pumping in my headphones.  I am putting the lyrics here, but you need listen to it.  Like it was written and sung from a woman in just my situation.  It is so super over-the-top desperate (perfect)!!!

I played it again and again when I really felt like I was dying one night on IL-2.  And it kept me going.

I really wish I could share the actual song, because you have to sing liiiiiiiiive like you really mean it.  But try and imagine.

A million stars light
This beautiful night
This is not a night to die
Let me sing and dance
Beneath the sky
I have such love to give...to give
I want a chance to live

Live
For the one I love
Love
As no one has loved
Give
Asking nothing in return

Free free to find my way
Free to have my say
Free to see the day

Be like I used to be
Like a wild bird free
With all of life in me

Live
For the one I love
Love
As no one has loved
Give
Asking nothing in return

Though this world tears us apart
We're still together in my heart
I want the world to hear my cry
Even if I have to die
Love will not die
Love will change the world

Live
For the one I love
Love
As no one has loved
Give
Asking nothing in return

I'll love until love wears me away
I'll die and I know my love will stay
And I know... I know my love will stay



There are so many things I don't really want any more.  I don't really want to care about appearances, or money, or where I'm going to be in 10 years, or how much I weigh, or what kind of car I drive, or what my kid's test scores are.  I don't really want a day off, or a pedicure, or nice car, or a big house, or even a clean house.  I would take all of these things, don't get me wrong.  But who really cares when all is said and done?   Pretty sure I'm not going to spend too much time worrying about that stuff.

I just want to give.  I want to live for Josh.  And James.  And Sam.  And Luke.

It's a Christ-like love.  Giving, asking nothing in return.  That is what I want.  I want to give.  I want to love.  That is why I want to live.

I bet if you look deep enough you will find that same desire.

Right now I talk about being a mother, because for me is the best way to give this kind of love, and it's Mother's day.  But everyone has their own purpose, and people to serve.

Sometimes you might ask as a mother,  Why?  Why am I doing this?  How?  How can I do this?    Because you need to.  Because you can.   And I'm guessing, because you want to.   Because once you were once sparked with the old magic.  Maybe that first time you were put into your own mother's arms the incredible love that makes the world keep going sparked you with the same unselfish desires and instincts.

Isn't it wonderful?  To have, or have had someone who (deep deep down) loves you always.  Someone who would do anything for you.  Although maybe she can't.  A love so pure and simple, deep and strong, that it never changes.  To have someone who will be with you no matter what.  If you are born imperfect, you are loved perfectly.  If you become imperfect along the way, if you do not live up to your mother's dreams, you are still what she dreams about and concerns herself with. She doesn't give up on you.  Cheers you on even if you are last in the race.  Especially if you are last.

And expression is only part of this love.  I know my kids love me equally.  But Luke is the only one young enough still to just let it pour from his heart to his mouth to my ears (you get to read a sample of it on my blog).  Sam used to, and even once James.  Luke I can fit in my lap.  Sam can fall asleep on my shoulder.  I can't hold them like I used to in a rocker and kiss their faces and blow on their tummies.  I can't even keep them right next to me all the time anymore. 

Even if...even if we can't be in the 'same spot.'  I know my love will stay with my boys. 

I know because I have felt love's scope these last couple months.  And it's longer than time, and deeper than space.

It's magic I'm only beginning to understand.  But not one bit afraid to use.

Take that cancer!

******

  "He didn't realize that love as powerful as your mother's for you leaves its own mark. Not a scar, no visible sign ... to have been loved so deeply, even though the person who loved us is gone, will give us some protection forever."   JK Rowling