Doing things differently...

Cleaning my house has dropped even farther down on my to-do list (scary, I know).
We are cuddling more.
We are playing more.
We are taking more walks.
We are smelling more flowers.
John is coming home earlier.
Grandparents are more involved and getting lots of time with their grandchildren.
Brothers are sweeter to each other (well, sometimes).

Today, my 6 year-old told me he wanted to be "bald" just like Andrew.  He had a huge smile on his face and was so excited about it.  And he wanted Andrew to watch him get his haircut.  It was so sweet and touching I had to keep myself from sobbing. 

So Aaron, Andrew and I went to the barber. He got his head shaved (not completely bald, but very short).  Afterwards we went and bought a hat for him, because after all, now that his hair is gone, he would need something to keep out the sun.  So all three boys walked around in hats all day.  It was so sweet.

I am taking even more pictures (somehow, that IS possible. My poor children.  But I need a new memory card..)
I am so much more aware of how quickly life can change.  It happens. 
I am sucking in the beauty of each moment.  The sweetness of each little toe. The amazing tenderness of each little hand as it caresses my arm.

I am letting Andrew lead the way.  He has some very healing ideas, and I just follow along.  Walks, and train parks, and dancing, and singing, and heavy metal music...

I am crying every night when I put him to bed...at least for a little while.
I am writing more.  I can't help myself.

I am sharing more.  When I was in high school the song I claimed for myself was "I am a rock, I am an island."  And I felt that way.  I never shared my pain.  I thought it was weak.   I rarely cried.  I never admitted that anything was wrong with me. I was lovely to be around. ha.

I had stopped that "rock" mentality before all of this, but suddenly I just feel compelled to write and share and blab it all over the place.  What is happening to me?  

But it is still hard for me to talk about.  I can write about it all day, but I would never pick up the phone and tell someone all of this...

So there has been some good.  We have been doing things differently.  We have been doing things better in all of this scary, horror-filled mess.

You Capture: Sky

Psalms 71: 19-21

Your righteousness reaches to the skies, O God,

you who have done great things.

Who, O God, is like you? 

Though you have made me see troubles, many and bitter,

(view from Andrew's hospital room)

you will restore my life again;

from the depths of the earth you will again bring me up. 

You will increase my honor and comfort me once again.

My Nurse Ursula

Okay, so this is probably something I should be mature about, and discuss it with the person...but that is hard, isn't it?  And I keep considering it, but haven't quite figured out if it is worth the fuss and hard feelings.  So, I am being immature, and writing about it here.

I have an issue with the nurse assigned to Andrew's care.  It might be because the first time she met me, she treated me like I had committed a crime. She seemed relish the chance to describe the consequences of cancer, and was strangely cold while describing the torture my child must endure for quite some time.  Or, perhaps it was more like I had just signed up for "Cancer bootcamp" and she felt it was her job to lay it all out there.  No emotions, just the facts. 

Since that day, when she forgot that I might have some intense feelings about my son and his cancer, I have resented and disliked her.  I should probably just let someone know and move on.  Perhaps  I will.

But instead, because I don't really want to cause waves, and because I try to convince myself that she is really "not that bad," and I don't want to be seen as a complainer, I keep hoping that maybe she will redeem herself.  And, she has been pleasant enough.  She still really lacks empathy, but I think she is trying.

But the resentment is already there.  I'm afraid everything she says now rubs me the wrong way.  The other day she commented on  "how many of our kids are so smart."  First I thought, well, why wouldn't they be?  Then I thought, YOUR kids???  Have YOU ever spent the night in a double-booked hospital room with a crying neighbor while you worry yourself sick about my child's cancer? Have YOU ever had to dread putting my child to sleep knowing that as soon as his pain meds wore off he would be up, crying in agony?  Have you ever had to give three mouth treatments a day to your child and watch him turn into a mumbling miserable mess?...No.  You lay no claim to my child.  He is in NO way YOURS.

And I immediately pictured her as Ursula the Sea Witch, receiving some strange pleasure from having ownership over all of these  "poor, unfortunate souls," --mere shriveled up shadows of the children they used to be.  And I wanted to remove Andrew from that group.  He is NOT hers.  She may take his blood, and hook him up to IVs, and tell me about the all the possible side effects of his medications.  But he is not hers in any way.

Hmmm...maybe I should make my title "The Nurse Ursula."  I don't want to claim her as mine, either.

I guess I'm a bit touchy about all of this...

Versatility...?

Thank you Lyndsay for The Versatile Blogger Award.  From what I have read, few of the previous winners have felt appropriately "versatile" for such recognition, but it is nice to be chosen for something!  Plus it gives me a chance to pull myself out of my current stream of thought and come up with some non-depressing things to talk about!  hooray!  Thank you Lyndsay :).

The rules are to 1) thank the person who gave you the award 2) tell seven thing about yourself and 3) pass the award on to other bloggers whom you love, and, I suppose, find to be versatile.

Seven things
 
1. I know it sounds cliche, but I love my mom's cherry pie.  Best dessert ever!!
 
2. I throw up if I eat avocado :(. No Guacamole for me.  Which stinks because it looks awesome when other people eat it.  (I could go for a margarita, some chips, and salsa right now!)
 
3. I went skydiving and bungee jumping...before I had kids.  Loved it! I love physical challenges.
 
4.  I love to sing.    I think it would be fun to be in a small little band that sang in coffee shops or something.  Maybe someday...
 
5.  I'm an ISFP on the Myers-Briggs personality test.  Look it up! Take the test yourself (or a free on-line version).  It's fun.
 
6.  I wish I had more time for artistic endeavors...drawing, painting, a photography class....

7. I am grateful for the many blessings in my life --my supportive husband, my sweet boys, my loving parents, and my beautiful friends.

Now to share the love... I'd like to hear 7 things about the very versatile WackyMummy and Colleen.  :)

Do you have two...?

"Do you have two nipples?"  That seems to be Andrew's standard greeting here in the hospital.  Perhaps I should be correcting him and telling him that is not an appropriate question, but it is too hilarious to correct.  He asks the nurses.  He asks the doctors.  Yesterday he asked grandma.  And then he asked if he could "see them."  I can't help but laugh, and that is a good thing, so I let him go on asking.

Other than the dreadfully long stay, being in "isolation" because of a slightly runny nose  (clear!),  the 14 mos old roommate who cries almost all the time (including in the middle of the night), and the cramped quarters, this hospital stay has been okay. Andrew has been eating, playing, laughing, joking, and asking the nurses about their private body parts. He is making the best of it.  I am trying to as well. 

Can't wait to go home!  I would pack up and leave at 4 am if they would let me.  Just waiting for the last bit of medicine to drip into his veins and we will be ON OUR WAY-- OUTTA HERE!

And then hope that the week at home will go okay.

The Hard Stuff

Yesterday, John and I shaved Andrew's head.  His hair was falling out like a shedding dog.  It was hard to watch, and his hair was getting in his eyes, his clothes, and everywhere.  So I picked up his little two year old body from his hospital bed and carried him to the hospital bathroom, with John pushing Andrew's pole and chemo tubes behind him.  We sat him down on a towel, and I began to shave.  I think he actually kind of enjoyed it, because he didn't complain very much.  He didn't even ask questions, just sat there and let me shave.  It was emotional for me.  All of his sweet blonde hair falling from his sweet little head... so sad.   I gathered up all of the clumps of hair, and put them in a baggy, like I did with his "first haircut."  I stuffed it in my purse. 

This is real.  My son has become one of those bald little children everyone pities and fears...  and the pit in my stomach is here to stay, I'm afraid.

(But if I do say so myself, he is a cute little bald guy.) 

But, as if to prove my mourning wrong, Andrew with his new "haircut" proceeded to eat 5 bowls of Fruit Loops for breakfast,  macaroni and cheese for lunch, and grilled cheese for dinner.  There was some fruit thrown in there, but we are in a hospital people.  The most unhealthy food around.  (His hunger probably had something to do with the steroids they used to protect his stomach from the chemo, but after a few weeks of a very weak appetite, I was happy to oblige and gave him bowl after bowl.)

So far, he is taking well to this chemo, but I am still holding my breath.  Last time I thought he had sailed through, and then two days later he was in massive pain that lasted for a week.  But these are different meds, so I will hope.  I am encouraged that he seems to be doing well so far, and that next time we may be able to complete this five day ordeal AT HOME and in the clinic.  Which will  be a HUGE relief.

Later in the day, I celebrated the last day of Kindergarten with my oldest son.  We went to a party and he played in a blow-up waterslide and had a blast with his friends.  I brought my middle son along as well, and they both had a good time.  I was happy for such a nice celebration of life. Then we headed over to the hospital.  My oldest is having a hard time with all of this...and cries every night when he has to go home, and leave Andrew and me in the hospital. My middle son is a little more oblivious, thankfully, for his sake.

This is hard.  I want my old life back.  I want my happy healthy baby back.  I want to be able to write happy, joyful posts.  But every morning I wake up too early and can't go back to sleep.  These mornings in the hospital are the worst, because I am all alone.  Andrew is asleep, my family is at home, and I am stuck in a hospital room with my anxieties, crappy TV, and a shower down the hall.

I spend a lot of time in prayer these mornings, trying to cope.  God has the control, and no matter what I think about, or how much I worry, I have none.  It all comes down to trusting Him, and praying, and that is hard.  I know that God allows bad things to happen to people, everyday.  He allows death and disfigurement despite boundless numbers of prayers.  So I beg for mercy, that in the end, He will heal my Andrew.  That this will be a mere chapter in our lives, in which we learned the value of each moment.  That this will be the time where I learned to curb my worry-wort ways and began living for each day.  I pray that someday Andrew will be an adult and grow up and have his own children.  I pray for mercy and healing for all of us.  I pray for peace in my heart, and joy for my children.  I pray and pray and pray.

Some People!!!

I have been amazed by the outpouring of love and care.  It is helping me to keep going.  I have also noticed that those who seem to best know how to comfort are typically those who have been "there."  In that desperate place.

Friends have been amazing.  Some have helped out with the boys.  Some have visited us in the hospital on frequent occasions.  Some send us encouraging notes on a regular basis. Many have made meals, some more than once.  Some comment frequently on my blog or facebook (thank you!).   I have friends I haven't seen since high school bringing me meals and sending me care packages.  All of these things are so touching to me.

My four year old son has two incredible teachers.  I didn't know HOW incredible they were until recently.  I didn't really know them very well, but as soon as I told them what was going on, they began acting as if they have always loved us.  They inspired other parents to provide meals for us every Monday, Wednesday, and Friday, for a whole month.  They volunteered to watch all of our boys for our anniversary so that we could have a night out together.  (Our "night out" turned out to be in the hospital with Andrew, but at least we got to be together.)

They took the boys to Chuck E. Cheese and spoiled them with pizza and tokens.  The boys came home with a gumball machine full of gumballs (their chosen prize) and a very happy memory.  Then when John and I got home, we found a vase of flowers, a bottle of wine, and an Anniversary card.  I was so moved.

When John got home to relieve them, one of the teachers told him that when she was little, her brother died of leukemia.  She remembers what a difficult time it was for her parents, going through treatments, and trying to take care of their other children.  She wanted to make it easier for us.   I'm tearing up right now, writing about it.

It made me realize how easy it is for me to stand on the sidelines when things happen to other people.  How easy it is to stay isolated and focused on myself when others around me are struggling.  This experience is teaching me just how important it is to provide care and support for those in the midst of pain.
One day, I will pay these kindnesses forward, many times.

The Good, the Bad, and the Ugly

It's been two days since my last confession, I mean blog.  It does feel good to have this place to come and spill it all. 

Well, at least, most of it.

The GOOD...

The last few days have been good. 

Andrew has been happy and playful, no pain meds needed. 

Tonight he ate a good meal instead of just picking at his food. 

It is amazing how much better his empty plate made me feel.

We filled up the good days with good stuff. 

 We went swimming!

This is Andrew's Superman stance. 

"Superman! To the rescue!"

he yells.

                                                        

We went to the park!

We made gooey crafts!

We played in the yard!

There was a lot of smiling. :)

There was a lot of music.

There was a lot of dancing.

And Andrew is cooperating with his mouth treatments a little better

and feeling proud of his bravery.

The BAD...

  Tomorrow we return to the torture chamber (the TC) for continued exorcism of this blasted demon. 

For a 5-day stay.

Completely new drugs tomorrow.  A whole new story.

Hoping it goes well, for Andrew's sake,

but also so that next time

 we can do it on an outpatient, clinic basis. 

Fingers, toes, eyes, and hairs are all crossed.

Praying hard.

The UGLY...

Today started off rough. 

 I noticed Andrew's hair was starting to fall out,

and the reality of this whole deal hit me really hard. 

Combine that with the ache-in-the-pit-of-my-stomach dread of another hospital stay and the unknown of these new chemo drugs

and I was a flowing faucet for several hours. 

John's mom came over to watch Andrew in the morning so that I could get my emissions testing done
(woo hoo!)

and do a little shopping. 

As I sat in the emissions line, I had tears running down my face. 

They didn't stop when the guy asked me to

"turn off the ignition, turn off my accessories, and exit the vehicle."

  They didn't stop when I sat in the strange little blue booth

and got out my credit card for payment. 

They didn't stop when the guy told me to "have a good afternoon." 

No, they started flowing even more.

They didn't stop when I got to Target. 

Some people are emotional eaters. 

I am an emotional shopper. 

I bought every little sign in the store that had something to do with "hope" and "courage" and "kindness"
(and where am I going to put them?  I have no idea.)

   I walked past several mirrors
(I was in the home decorating section)

and it was pretty scary.

For lunch I went to Aaron's school for his end of the year party.  People noticed Andrew's scar, so I had to tell the story. 

More tears.

But later, one of the moms called me. 
Her son had cancer when he was four, and he is now doing great. 
She told me I could call anytime, and that pretty soon,

Andrew would be up and running around,

just like her son.

And even though neither of us has any idea

 if that will really be true or not,

it made me feel better. 

So, I haven't cried since about 4 pm.

Gotta go pack my bags.

The TC awaits.

Shifting Gears

I keep hoping, wanting, needing things to go back to somewhat normal, and being disappointed when they don't.  Can't I just have a little of somewhat normal?   I guess not :(.  I was almost getting myself to accept (well kinda) that Andrew and I have to be in the hospital every other week for months and months on end.  I was just getting to accept that I have to give Andrew a shot every night, and swab his mouth with a disgusting substance three times a day.  I was finally beginning to accept the horrible reality that these nasty chemicals are the only way to keep him alive.  (But I was still hoping the side effects would be minimal). 

But now I am realizing even those expectations were too optimistic.  I keep finding myself brutally disappointed.  The day after my parents embarked on their vacation far far away, (thinking that we would be out of the hospital for a while), I found myself the next morning, crying in the ER out of loneliness, overwhelming sadness, and fear.  (John was with the boys. I was alone with Andrew who was in intense pain.)  When I went to Andrew's clinic appointment on our "off" weekend, expecting an hour appointment and hoping to escape somewhere fun afterward, I found myself spending the whole day there while Andrew got a blood transfusion, scrambling to find someone to pick up my other boys from school.  When I looked forward to a weekend at home with my husband and boys, and perhaps a little hiking, I instead discovered at 5 am that Andrew had a slight temperature and was in lots of pain.  Suddenly I was spending my anniversary in the hospital.

I am just realizing what it really means to live moment by moment.  It was all cliche before.  But now I understand.  My life can no longer be planned.  It ALL depends on how Andrew is doing.  My sweet baby. 
Every day will be a new surprise.  Andrew may be happy and play outside today, smearing paint on his toes.  Or he may wake up in agony, and end up on a morphine drip in the hospital.  There are so many side effects, and they all happen a different number of days after the chemo.  So while he may feel fine on Sunday, on Monday he will have extreme jaw pain and be unable to open his mouth.  While he may have a fun playful day on Thursday, on Friday he will end up in the clinic, being transfused.

So, on my anniversary, instead of spending it out to dinner and a movie, or maybe a show at the local theater, we are watching "UP" on the hospital TV for the 10th time.  I have a little cuddler next to me who (after some morphine) is finally eating a little chocolate ice cream and frequently strokes my arm in affection.  My husband is here on the couch next to our bed, working on some crazy genogram for the book of Jeremiah (he has some strange stress-relief methods) and still perfecting his Scooby Doo cartoons. My other boys are having a blast with friends....I am thankful they had a good day. And there have been some sweet moments here...

But this was not the anniversary I was hoping for, or looking forward to....  But perhaps that is the problem.  My approach to life has remained in "normal" gear.  And as much as I hate to admit it (and I do HATE to admit it) my life has become anything but "normal."  This anniversary in the hospital has given me a little clarity about the the new way I need approach my life.  I need to shift out of "normal" and into "kill the cancer" gear. I still resent it. I still wish we could all just go outside today and play. Because it is beautiful out. But I think I am finally resigning myself to the fact that this is how it is going to be for a while. Other people have gone through worse things...it is my turn now.


This year is all about getting Andrew better, it is about keeping Andrew alive.  That is it.  Anniversaries, family days, nights in my own bed, parties, and playdates all play second fiddle.  Each day I need to figure out what will best help Andrew, and go from there.  Does he need a little bit of sunlight and some fun? or will it be morphine and mommy time?  I need to be prepared to have my friends and family help me out regularly. I need to have support phone numbers and help ready to go, because I cannot shift into "kill the cancer" gear all alone.  I have two (three) other boys who also need my attention...(not to mention my own needs and sanity to protect...) 

Moment by moment, with one goal:  KILL THE CANCER.

  

Memory...a wedding in red.

 It's my anniversary this Saturday the 15th. 

16 years. 

And every year with him is better.

But it started out kind-of rocky. 

From what felt like "day one," John wanted to marry me. 

I'm not trying to brag.  In fact, it was a lot of pressure. 

It took me a little longer to make up my mind. 

I loved him, and I loved being with him,
but I didn't have the strength of conviction that John had,
as quickly as John had it. 

And John wanted the security of knowing that he was going to get what he wanted. 

 He seemed desperate for it. 

And I, feeling that need in him,
even more than I was feeling my own need for time and space,
gave in to the pressure when he asked me to marry him. 

We had only known each other for about 6 mos,
and I knew I wasn't ready,

but I didn't want to hurt him.

I was only 20.  He was only 19.

So, for almost a year, I planned a wedding I wasn't ready for,
feebly communicating my desire to postpone things,
and giving in whenever John put on the pressure. 

This wasn't a mean pressure.  It felt like a desperation pressure. 

Anne Murray's "You Needed Me" was "our song" for a while...and it felt that way. 

 We needed each other.  Truly.

However, John was a little more in touch with his need than I was.

Two weeks before the wedding, after all of the invitations were sent out,
I called it off. 
I couldn't do it anymore. 

 I NEEDED space to feel my own feelings and not worry about his. 

I was having dreams that he would be waiting in front of the church,

and I would not be there.  

So I finally managed to put my foot down and say NO.

And it was hard.  It was horrible.  Searing pain. Because I loved him.

  But I needed to be saying "yes" for my reasons, not his. 

I knew that if we got married under current conditions, we would be divorced soon.
  My resentment of his pressure was growing intense.

So we took several painful months off from each other. 
I went to therapy to learn how to set some boundaries for myself.  

 I was drowning, trying to please him instead of listening to my own gut. 

I took some hard steps.  I stood up for what I needed. 

And John did his own soul searching.

  He apologized. 

 He told me there would be no more pressure. 

He backed off. 

He listened.

Less than a year from the date of our first planned wedding, we got married.
I asked him this time. 

We didn't send out invitations. 

We didn't plan anything other than to ask our pastor to marry us. 

We called a few friends a few hours before the ceremony,

and invited them to come witness it. 

We got married under a Palo Verde tree in Tucson behind our church. 

I truly cannot believe how clueless I was. 

I wore a RED dress (my only nice dress). 

He wore a blue shirt (his only nice shirt.) 

We wore the same clothes the day before for my college graduation.

We said "I do" and headed to the nearest La Quinta Inn for our one night honeymoon.

The best decision of my life.
(The wedding, not La Quinta)

Could my hair be any bigger?

:)

Happiness...

I didn't always see it, but
Happiness was everywhere for me, until April 17, when I found out my little 2 year old has cancer.
The tumor was removed, but we still have to do chemo.  And radiation.

It goes against every motherly instinct to let your child lie in a bed,
knowing that poison is dripping through his veins.
But the alternative is way worse.

And it has been hard.

For the last three weeks, finding my happiness has been difficult.
It has been much easier to find the terror, and the fear, and the worry.
My child has been poked and prodded.
He has been under anesthesia more times in the past month
than I have been in my lifetime.
I rips open my gut every time.

He has mouth treatments from which he runs in terror,
and shots every evening.
His mouth has been so sore from the chemo stripping away his mucous membranes that he hasn't been able to eat anything but popsicles.

So finding his happy has been hard.
Finding mine has been almost impossible.

But today has been truly happy.


Happiness is an afternoon outside.

An outdoor picnic.

A cheese sandwich, when you have been surviving on popsicles.

A juicy strawberry...

and painting in the grass.

 It is freedom of expression...

and watering a new tree.

It is going down a slide, for the first time in a month.

Happiness is watching it happen.

You Capture: Yellow

A day at the "train park" at the pleading of my two-year-old.

A rose from my yard.

Foamy letters for spelling out names.

Flowers, for me.

Yellow!

Oxycodone, our new best friend

Just as I was about to pick up the couch and throw it out my glass patio doors for a few moments of rageful pleasure (you don't think I could do it?  you don't know how much adrenaline is rushing through my veins) Andrew discovered the power of oxycodone.  A strong narcotic.  A new leash on  life.

Monday and Tuesday were bad days.  My usually excitable, fun-loving, gregarious 2-year-old sat around with a sad grimace, asking for food and then crying when he couldn't eat even one bite.  He would hardly open his mouth to talk, let alone eat. And the rage in my stomach was growing more and more palpable each second.  Everyone was becoming my enemy.  The doctors (why hasn't anyone come up with a better cure for this!!!!!) the nurses (inadequate empathy!! "get some training people and wipe that half happy/half sad "empathic" smile off your face" (I only thought this, mind you) and anyone who looked at me the wrong way.  "Stay far far away, I am in a bad bad place" should have been pasted on my forehead.

On Monday morning I had been given a prescription for oxycodone, but the pharmacist had warned me that it would "knock him out."  Knock him out?  I don't want him "knocked out!" I want him to eat!  How can he eat if he is asleep!  So I was just giving it to him at night.  And then last night, as soon as I gave it to him, it was like magic. Like Prince Charming waking up Snow White with a kiss.  He was immediately talkative, and HUNGRY! Hooray.  So we went downstairs and I sat with him at the table for 45 minutes while he talked to me ( very animatedly) and ate his WHOLE BOWL of oatmeal. And three glasses of milk.  Then we went upstairs, put him to bed, and he slept.

This morning, once again, he looked miserable.  Gave him the oxycodone, and almost back to normal.  He is falling asleep here on my lap, but only after he ate half of a waffle (with flax seed) and almost a WHOLE BOWL of oatmeal.  And two glasses of milk.  Then he chatted the whole way to  (his brother's) school and sang "Breaking the Law" once again. 

Thankful for oxycodone, and my impulse control.  My couch definitely looks better INSIDE my house.

A Room With a View

Okay, I'm afraid my mood each day may be dependent on my little

Andrew's happiness. 

And today, that is a good thing.

He is not himself, but he is seeming better than yesterday,

so I will take it.

So, I thought I would take advantage of my slightly better mood to introduce you all to my new 

"Home Away from Home."

Here is a quick tour:

The bedroom

The Family Room:

Our "Home" theater/office

Wall Art

(as drawn by my husband, a budding cartoonist)

And, last, but not least, the view:

Not too bad if you ignore all the shiny metal stuff on the roof.

Not exactly E.M. Forster, but what can you do?

:)

Popsicles and Bottlebrush

Last night was not so happy.  Andrew couldn't sleep.  His mouth hurt from all the poisons they sent coursing through his body.  This morning he was hungry, but his mouth hurt so bad, he couldn't even drink water.

Bring in the cure-all solutions: popsicles and a walk

(this was Andrew's idea, and a damn good one.)

So we walked around the block.  I took my camera, Andrew took his popsicle.

Along the way, I noticed some beautiful trees.  I don't know the technical term, but they look like bottlebrush.  I saw two different kinds.

When we got home, Andrew ate another popsicle. 

(this face makes me sad.  because usually it would be smiling.)

And then we went to the clinic where I learned how to give him shots.  Everyday.

We are going to need lots of walks and popsicles to get through this! 

 The onslaught against his tiny little body never ends.

(I was going to try to make this post more positive, but I'm just not there yet. sorry. At least I took some pictures :) )

Visit Lisa's blog for more Macro Monday!