the last two miles

Almost at the finish line. 

I feel like I did near the end of my marathon in 1996. 

Focusing on the ground;

staring at my feet;

putting one foot in front of the other;

searching for a soothing song to sing to the beat of my footsteps;

fearing that my knees might implode, or my heart might stop beating, or my lungs might collapse...

right before the finish line. 

People are walking in front of me,

chit-chatting about la-di-da,

and I am in excruciating pain.  

I want to scream "get out of my way!" 

but I am so depleted I can hardly gasp for air. 

Yeah. 

Just like that. 

I'm so afraid something will disrupt the completion of this chemo,

 I can hardly move, or talk, or blog.

 If all goes well, the last chemo begins next Monday. 

I am so desperate for it to be done by Christmas.... 

What an amazing gift that would be, for our whole family.

However, I will admit that the Christmas season is definitely serving as a beautiful distraction.  Our Arizona weather is actually COLD!!!  I have been wearing my winter coat in the mornings and scraping frost off my windshield!!  I love the Christmas lights everywhere and blaring carols in the car.   Every night before sleep, my jammied boys cuddle in my bed for a live broadcast Christmas show on ABC, or CBS, with commercials and everything, just like when I was little.

I let my boys decorate the Christmas tree this year, all by themselves.  I think I am going to leave it that way.  A few ribbons strewn around the middle and a bunch of ornaments clumped at the bottom.  They keep taking them off, looking and talking about them, and putting them back on.  It's sweet.  Sammy was so excited about unpacking the Christmas village houses, I told him he "could be in charge of them."  He set them up the way he wanted to, and is so proud.

I hope you all are enjoying the Christmas/holiday season. 

I can see the finish line ahead.  It would be nice to stop running, and breathe again.  And sing songs on Christmas without having to worry about chemo the next morning.  That would be

really

very

awesomely

amazingly

overwhelmingly

nice.

Please pray that it will be so.

Wow.  It's midnight.  Happy December to you all.



Gratitude...attempt #2

Last Tuesday, after posting my angry blog, I went to bed, still frustrated. In the middle of the night, Andrew woke up screaming, kicking his legs in pain, and crying that his eye hurt. Yup. That eye. I think my whole body stopped moving. Lungs, heart, everything. Terror. I took him downstairs, where John was still working and gave Andrew a bowl of cereal. He seemed happy enough, so I decided on denial.

That worked until Thursday morning when he woke up and his eye was puffy and he again complained that his "eye hurt." I was panic-stricken. During our scheduled doctor's appointment that morning I could hardly admit my fear to the nurse. I saw Andrew's life, and my own, taking a dramatic nose-dive.

Thursday morning they scheduled a CT scan before he began his previously scheduled chemo. I held my breath for several hours and sat in numb, silent hysteria until the doctor stuck his hand through the door with an "OK" sign. It was just a sinus infection, on both sides. It affected the one eye more significantly, probably due to all that has been done to it (surgery, radiation). He's on massive anti-biotics, but he is okay.

Wow. The moment after his original scream Tuesday night, I realized how much I had been taking for granted. I realized how silly I was to have spent my day worrying about the future, when the day itself had been happy, and Andrew had been happy. I realized how dependent I am on God for everything, and that everything I have is a blessing from him. And I have SO much.

We spent three VERY long days in the hospital. We arrived at 8 am Thursday morning and left at 8 pm Saturday evening, exhausted.

They gave Andrew medicine to "sedate" him for the CT scan, but it turned out to have exactly the opposite effect. He turned into a raging, writhing, miserable lunatic for 12 hours. He was literally attempting to dive out of his bed, headfirst. He screamed at me. He hit me. He screamed that he "hated me." Over and over. Every so often, he would calm down, put his head in my lap and sob. I would hug him and comfort him. Then he would ask for food, I would make it, and he would throw it at me. I kept trying to appease him, and please him, and make him happy, but he just kept screaming. If he could have punched me in the face, he would have. (He reminded me of myself, in my conversations with God.) It was exhausting, for both of us.

On Friday morning, the hospital staff and patients celebrated Andrew's last inpatient chemo. We sang the "hokie pokie." He "rang the gong" and licked the frosting off of three glorious cupcakes, blue, chocolate, and pink. (The dye in the cupcakes was so bright, his face was dyed pink for 24 hours. I'm not sure what was more toxic, the chemo or his cupcakes :).) I took about 2000 pictures while also trying to videotape. Surprisingly enough, none of it turned out very well. I needed at least one more hand.

Sunday I woke up with my own sinus infection and my period. I still feel icky and have a bad headache. Blah.

Earlier today I wrote, and then retracted a post about gratitude. It was a very cognitive, in my head, "trying to figure things out" post. It exhausted me, and it didn't feel real as I posted it, so I took it back.

I am grateful for so much. I can't walk two feet in my house without tripping over my blessings. I realize that everything in my life is a gift. But the last week or so, I have honestly felt like crawling into a deep dark hole and staying there. I start to worry that depression might take over and I wonder if I can I keep handling this... I guess part of it is that I dread the next few days. I fear what that orange "medicine" is going to do to my son this time. I am also finding myself terrified of "life after chemo." I thought I would be more excited, but I am finding myself so scared.

But I AM grateful.  I am grateful for a God who can handle my rage. I am grateful for a God who keeps on loving me, even when I call him a liar and a sadist. I am grateful for a beautiful husband who loves being a father and enjoys his children. I am grateful for my sweet and precious children. I am thankful for my dogs. I have a house, food, clothing, and a comfortable bed to sleep in every night. The list goes on and on.

It has been a long, emotional week. But I am grateful to have lived it.

Happy Thanksgiving to you and yours.

Coffee at the mall, with God

Ahhh...I'm actually sitting at my computer. 

I would have joined you earlier for coffee but... I was at the mall!  On a "should have been blissful" all-day shopping excursion.  My mom watched Andrew and gave me some time to myself.

Unfortunately, "time to myself" proves to be dangerous these days.

I just sit and obsess too much.  I sit and jabber at God so much.  All day. Every day.  He's probably up there thinking (much like you, dear readers) "Enough already!! Haven't we hashed this through before?"  Alas.  Yes.  Yes, we have.

 So, I had my coffee and conversation with God today.  I'm afraid I did all the talking.

It went something like this:

Me, searching through the sweaters at Nordstrom Rack:  Thanks! (tons of sarcasm there).  I knew it was too good to be true.  I could hardly believe my blessings.  I was so amazed at my three beautiful boys, how they were mine(!), and so sweet, and so cute.  Of course!! You saved pediatric cancer for my child.  For me.  But "oh how you love me."  mmm hmm.  Go sell crazy somewhere else.

Later (ordering a decaf ginger cookie latte at Coffee Bean and Tea Leaf and noticing that "Jesus" was a barrista):   I wish I had the faith that some people have. Where they can cling to You and believe that You are good even when their baby is diagnosed with cancer.  Are there really people like that?  Because, wow, that is impressive.  I'm not there.  Right now, I am SO ANGRY at you I wish I could punch you in the face multiple times.  But of course, you are invisible, untouchable, impermeable God and I am mere, weak, pathetic, human throwing punches that won't touch you in the least.  Happy for you.

And then as I wander through the CD racks, I reflect, feeling slightly worried that God might retaliate for my brazenness and lack of "appropriate humility:"  Really, things have gone quite well so far.  Maybe You have been involved more than I know.  Maybe I am not giving you credit where credit is due.  Maybe you have been protecting Andrew through all of this. I hope so.  Are you there God?  It's me, Julie.  Are you there?

And then I ask myself:  What do I want from God? Andrew is at home with Grandma, happy, playing, and making platelets.  He usually handles the chemo well, he likes going to the clinic...  Am I giving God a chance at all? Is there anything he COULD  do to show me that he loves me and that he cares?  I'm afraid I need a "mene mene tekel upharsin" moment, maybe on a sticky note.  "THE CANCER WONT COME BACK" would be nice.  But, that's not going to happen, is it? I won't get any confirmation that I will be alive tomorrow either...  Such happy thoughts for a day at the mall.


Me, considering a black sweater jacket at Buckle:  Why do you torture us God?  Why do you allow SO much pain? I think about my friends who have been through horrific family deaths, or multiple bouts with cancer,  and a friend whose wife died giving birth to their brain damaged (due to birth complications) child.  I want to believe that God will only allow us to be tortured to a certain degree and then provide mercy once we have met a pain threshhold.  But no.  Doesn't seem to work that way.   And I grow very afraid.  Terrified.  We are coming to the end of the chemo.  The moment(s) of truth is arriving.  Did the chemo kill the cancer?   I am so scared.

While considering various wall art today, I read a poster today that said, "Sometimes God calms the storm, and sometimes He lets the storm rage and calms His child."  Sounds so uplifting and soothing.  But I thought...screw that!!!  I don't want to be calmed.  I want the storm to stop!  I don't want consolation prizes!  I don't want toys from the toy closet to make me feel better.  I don't want hugs.  I want my Andrew.  Please dear God.  I want my Andrew.

Me, picking out three small ski hats and warm gloves for our hopeful trip to the snow:  I wish I could be more faithful, and stick with my "surrender" idea. I wish I could stay in those moments where I feel like I can handle it.  I wish I could let go, and trust, and feel at ease with whatever comes.  But today I just feel sad and worried and terrified.   Whenever I think about my little boy, and his happiness and glee, and his plans for kindergarten, I get SO angry.  I wish I were in a place where I could just be grateful for each day.  Not today.

Sometimes I feel like this whole world is a Jurassic park experiment gone bad, and the creation gets all the blame. 

But the idea of "no God" is worse to me than a seemingly absent God, so I keep praying, and hoping, and asking for forgiveness for wanting to punch Jesus in the face.  (The God one, not the barrista.)

A verse that I did find helpful today:  "Trust in the Lord with all your heart, and lean not on your own understanding.  In all your ways, acknowledge Him, and He will direct your path."  Proverbs 3:5-6

Praying for hope, and trust, and faith, and forgiveness, and peace, and life.  Once again. 

I hope your coffee conversations were a little less intense than mine.

Run, Andrew, Run!!

There was quite a build-up.

Daddy had Aaron and Sammy running laps at dusk,

practicing for the "big run" on Saturday morning 

(100 yard dash courtesy of Sammy's school). 

They raced from the neighbor's house to our mailbox,

from the mailbox to the garbage can,

and back to the neighbor's house. 

Several times. 

Their faces were determined; their feet were quick.

Andrew and I were the spectators and cheerleaders. 

Andrew couldn't run because he was
connected to his chemo tubes. 

He cycled around the driveway on his bike,

while I pushed the handle and wore his fluid-filled backpack.

We cheered "the brothers" on. 
And then I gave them the "winning isn't everything" speech.

I was trying to downplay John's excited hype over
how they were going to "WIN!" 

and reminded them that racing could still be fun, 

even if they lost. 

Even if they did not get a ribbon. 

(That's what moms say, right?)

Andrew was not interested in the race.  

He was just going to "play on the playground." 

Saturday, 8 am: 

After a long week of chemo, tubes,

constantly wet diapers, and threats of the "moorgency room"

(if the tubes were to come dislodged),  

I was able to remove Andrew's chemo tubes.  

Hooray!! 

An hour later we arrived at the park, ready for the big run.

I stayed in the car and put on my make-up 

while John took the boys and gave them one more pep talk. 

When I met up with them, all THREE were in blue. 

Ready to go. 

I immediately assumed that Andrew
would back out at the last second.

 I had already resolved that
"at least the money was going to the school,"

and at least "Andrew likes the shirt."

The races began.

Aaron ran first.  He got third!!

Sammy ran next (with considerably more competition). 

He wasn't as happy with his results.

:(

Poor buddy.

I was still sure that Andrew would back out. 

There was a long wait between the races.

I was sure Andrew would grow bored and run away to the playground.

 But when the loud speaker called for "three-year-old boys,"

 there he was. 

Fresh off chemo,

wearing his dragon hat,

feet on the starting line,

 and ready to GO!

His brothers were on the sidelines:

Daddy coached him one last time.

The race started. 

"Go Andrew, Go!!!" I screamed.

 His eyes immediately searched for me on the side-lines. 

(oops!)

 I was sure he was going to run straight towards me,

duck under the boundary tape,

and quit.

But he didn't.

He saw me.

He smiled.

He ran towards me,

and kept right on running

towards the finish line.

He was several feet behind the slowest runner.

But he kept running.

He was the last one across.

But he didn't care.

I was wiping my eyes

as the race volunteer took him to the medal table.

He did it!

He was so proud.

And then he ran to the playground.

He kept that medal around his neck the whole time.

That'll teach me.

Once again.

Never underestimate Andrew.

Never.

And

Winning is definitely NOT everything.



Hatsapolooza!

 I have lots and lots of hats to report!!!  Thank you all so much :)

Maryland

Singapore (notice the ponytail?) 

He loves it!

Andrew wanted to wear this one of out the house.

I convinced him it might be better to wear at home...:)

   He also got this hat from Singapore

and this one from New York

(all in the same package!  wow!)

California

West Virginia

 (The paint on his chin matches the yellow in the hat.  A nice touch, I thought.)

North Dakota

and

Washington

Bart the dog

was not a big fan of the

"ponytail hat."

Thanks again!!

You all are wonderful.

Cereal, Chemo, and Conversations

I feel like I've been away forever!  It has only been a week.  

I've been busy.

I've been busy having conversations.

Conversations like this:

Me: "What do you want for breakfast?"

Andrew: "Cinnamon Toast Crunch"

Me: "We don't have any.  What else do you want?"

Andrew:  "Cinnamon Toast Crunch."

Me: "We are all out.  What else do you want?"

Andrew:  "Cinnamon Toast Crunch."

Me: "I wish I had some for you.  I will buy some today.  But WE ARE ALL OUT.  What else do you want?  We have Lucky Charms ( I know, I am trying to foist Lucky Charms on my child...what kind of mom does that?  A desperate one.).  How about Lucky Charms?"


Andrew:  "I want Cinnamon Toast Crunch!"

Me:  "How about Rice Chex.  With a little sugar?"

Andrew:   "NO. I want Cinnamon Toast Crunch!" (He breaks down in tears)

Me:  "How about Lucky Charms?"

Aaron:  "I want Rice Chex."

I get out the Rice Chex.   On top of the Rice Chex bag, I find an almost empty bag of CINNAMON TOAST CRUNCH! Enough for one bowl!!


Me: "Andrew! I found Cinnamon Toast Crunch! Hooray!"

I pour it into his GREEN bowl (there were previous tears about bowl colors).

Andrew:  "NO!!"  (more tears)

Me : "What. do. you. want. Andrew?"

Andrew:  "Lucky Charms."

(Aaaahhh!!!)

Me:  "Does ANYONE want this Cinnamon Toast Crunch!?"

Sammy:  "I do."

I start to pour the CTC from Andrew's GREEN bowl to Sammy's RED bowl.

Andrew: "NO!"

Me:  "Andrew.  Do you want Cinnamon Toast Crunch or Lucky Charms?"

Andrew:  "Lucky Charms."

Me:  "Okay.  Then Sammy is going to have the Cinnamon Toast Crunch.  Okay?"

Andrew:  an almost imperceptible nod, tears still dripping

I pour the Cinnamon Toast Crunch into the RED bowl.  Lucky Charms into the GREEN bowl.  And Rice Chex into the ORANGE bowl. 

I breathe in. 

I breathe out.

I sit down with a brown bowl full of Wheat Chex (with a little sugar), bring the spoon up to my mouth, and...

All three boys:  "Can I have something to drink?"

(Aaaaahhhhh!!!!)

Are you exausted? and tired of the words "Cinnamon Toast Crunch?"

Because I am!!  This was just one of many conversations. 

Many of them are very sweet.

But some of them are so emotional it is hard to know how to handle them.

And I wonder...is this because of the chemo (he has been hooked up to tubes all week...)? or because he just turned three!?

Maybe a little of both.

(Aaaahhhh!!!!)

When I wasn't having prolonged conversations about cereal,
there were other activities to attend to. 

Some fun, some not so fun.



Halloween: Fun.

i am supposed to be Lucy Ricardo...but I couldn't stand the wig.





A pumpkin patch:  Fun.

Hanging out at the beach (oncology clinic) every day:  Fun decorations.  But not so fun.





Making germs (first grade homework):  Kinda fun.

And trying to clean a disaster of a house:  Not so fun.

I feel like I keep cleaning up, but it just gets messier and messier.  I put one dish away and two more are used.

(No pictures of THAT).

In fact, I really need to be cleaning my house instead of sitting here.

But here I sit.  Relaxing.  Because wow!  It has been a week!!

How have you been?  I wouldn't know because I haven't had time to check in!!

I will soon.  :)