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!

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.

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.

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.)

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!

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?

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

lilies of the field

We are home this afternoon.  After the 9th dose (7 was the goal) I had a pretty bad fever with hard to control chills and my white blood count dropped.  There also might have been a bit of confusion (we have stayed at some pretty nice hotels in Vegas;).  They called it quits. 

I came home to a house full of flowers and cards and anonymous, generous gifts.  Our lawn had been mowed by the home teachers.  My porch was stuffed with annuals for the flower beds from my neighbors and family.  Everyone has taken such good care of my things and my little people. I feel slightly scolded that I ever even worry.

Today I have been considering the lilies of the field; "how they grow..Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself."  (Matthew 6).  God knows how to take care of us.  And he will.  I felt it today (with labored breaths and slogging steps). 

Here is a before and after picture.  I have 20 pounds of water to pee and sweat off in the next few days.

We noticed at least one of the tumors melted this week.  It was one on my shoulder that I didn't like.  Take that.  When all this water comes off I will see where we stand a little clearer.  The other tumors that the IL-2 attacked have needed both weeks of therapy to disappear.  So all things considered, we are pretty happy with how things went down this round.

IL2 - Round 5 - Update 3.5

I spoke too soon.

Apparently Alisa is not quite crazy enough.  She is getting another does this morning and potentially one more tonight, we will see.

The doctor did explain that the reason we are getting more doses is because they understand a little better what her body can handle.

IL2 - Round 5 - Update 3

Alisa received her 7th dose Thursday morning.  That was the goal for this week.  We decided to try for one more and she received her 8th dose at 11:00 pm.

I waited up to wait for her shaking (almost always happens 1.5-2 hours after her dose) because I like to help the nurses (mostly I just put warm blankets on her, which doesn't help that much, while the nurses give her the drugs).  I suggested if they just left the drugs in the room I could probably handle it, they didn't think that would work.

I am usually not awake when Alisa shakes at night, and I found out I am missing out on some fun.  When she woke up she asked me where we were.  When I told her we were at the hospital she was quite disappointed.  Then she asked me where the kids were, she was obviously worried about them.  She closed her eyes and 2 minutes later she asked me again where we were, then she asked when we would go home.  2 minutes later she asked me again, this time she just kind of sighed, and said "I thought we were in Vegas, this place is too nice to be a hospital.

Kind of funny, kind of sad.  One of the side affects of the drug is fluid in the brain, which is why she is going a little crazy by the end of the week.  They give her a test every day and constantly ask her if she has had any vivid dreams.

Looks like we won't be getting any more doses this week, but I guess we already knew that.

IL2 - Round 5 - Update 2

Things have gone a bit differently today.  Alisa is feeling less nauseous but was shaking pretty bad after her dose. 

She has been alert and even went for a walk (about 200 ft maybe) before she got tired and had to lay down.

I went for a run while she was feeling better.

The food here is really good, but Alisa gets sick thinking about the hospital food.  I used to eat in the room, but now she won't let me, the smell makes her sick.  I think it is all in her head.  Because of this she had me go down to the Corner Bakery Cafe and get her a sandwich.  She ate the whole thing, her first meal of the week.

We are waiting for dose number 6, should be here soon.

We missed Luke and Sam losing teeth on the same day.  The tooth fairy might be a bit more responsible while we are gone. I think James had to wait 3 weeks before he got a visit.

FaceTime with the kids is always a treat. 

IL2 - Round 5 - Update 1

I pretty much forgot to blog last night.  I guess this has become routine enough that I guess I didn't think there was much to report.

Sorry about that.

Alisa just received her 4th dose.  She has been sick, of course, but overall nothing scary.  Her blood pressure is doing well, and mostly she just feels slightly nauseous.  She has been sleeping a lot.

I think the hardest part about this week is that we have been expecting this to be the "cure."  The doctors have helped to remind us that this is working, really well.  Most people never make it this far because the tumors are spreading so fast.  Her big tumors have not grown and all the ones we can feel (that will freak you out) are not in organs.

So, with our expectations properly set, we are excited about these last 2 rounds because we can continue to fight.

This week Alisa brought some pictures of the family and the boys to help remind us why we are here.

We also marked all the tumors (with magic marker) so we had something to target. 

Thanks for all the thoughts and prayers, I don't think we can ever thank you all enough.

same spot

I have started six posts since I last published anything.  I have tried to finish them, but I can't seem to come to any conclusions.

The perfect example of my problems as of late. 

It feels very much like I am having an identity crisis.  I am not quite sure how to answer the simple greeting question "How are you?"  This is always asked with the kindest heart.  But under the circumstances, it is matched occasionally by my angry heart.

Much like a teenager, I am awkward to talk to right now.  I find myself doing super lame things like...avoiding eye contact sometimes.  What?  This only adds to the isolating feelings that are inevitable with this kind of diagnosis.  I have been told by some of my closest friends that I am hard to read, or that I seemed shy or snobby when they first met me.  I can only imagine how I'm coming across now.  I am so sorry!  It's just that I don't know how I am.  Truly.  Or even exactly who I am.  Where I'm going.  What's my purpose on the earth.  I know the Sunday School answers.  I even believe them, I think it's just making that make sense into my short-term world right now.  I don't even know if I will be around next year.  What does that mean?  Where does that put me?  Should I be happy?  Should I be in despair?  Should I be smiling, or crying?  I do both all the time, within the same minute.  I guess I'm just a mixed up mess most of the time.

I know what to do at the hospital.  I have direction.  I am big-time focused on a big goal.  I can feel progress.  I know how to be a patient.  Those weeks that are so hard physically are not too bad mentally.  I want to live.  I want a cure.  That is enough direction in the hospital. 

We had the opportunity to tag along to Palm Springs this week with Josh while he attended a conference.  I was with my boys all day, all night.  We swam at the pool (actually it was the first time I didn't get in), played tennis, croquet,  mini golf, rode bikes, told jokes, visited a few fun places with grandma and grandpa.

But we had to come home and face reality:  Mom is going back to the hospital to start another cycle of IL-2.

Tonight my six year old was sobbing on my shoulder, "But why did you even get cancer?  Why do you even have to go to the hospital?"  A scripture came to my mind that I had read last week in the Temple:

If thou art called to pass through tribulation... and if with a drawn sword thine enemies tear thee from the bosom of thy wife, and of thine offspring, and thine elder son, although but six years of age, shall cling to thy garments, and shall say, My father, my father, why can’t you stay with us?...if the heavens gather blackness, and all the elements combine to hedge up the way; and above all, if the very jaws of hell shall gape open the mouth wide after thee, know thou, my son, that all these things shall give thee experience, and shall be for thy good.  The Son of Man hath descended below them all.  Art thou greater than he?   Doctrine and Covenents 122.

"But I want to be with you forever mommy!"  "You will, baby.  You know that.  We talk about it in church all the time."  "I know, but I want to be in the same spot as you.  I want to always be in the same area.  Do you know what I mean?"  "Yes."  Tears.  "I just want to be touching you all the time."

I know exactly what he means.

Which is why tomorrow I check myself into the ICU and hope the gates of hell to swallow me whole, and spit me out, but keep the cancer please!!!  Give me some experience, fine!  But let me live!!!

****

No conclusions were reached here either I guess.  See?