About that pie...

Okay.  So after I write a post like the last one, I always feel a bit guilty. 

I know there are lots of people out there who suffer FAR more than I do. 

There are people who have no hope or treatment for their child. 

And even worse than that.

There is hope for Andrew. 

He did not have an infection like I feared. 

 His mouth sores are healing quickly. 

I am grateful.

Thanks for listening to my freak out.

I also feel guilty (not really, but yeah, in a silly way)

that I promised pie and did not deliver. 

Virtual or not, pie was promised. 

The boys and I remedied that situation last night. :)

I know I promised a Martha Stewart pumpkin pie,

but if you saw my house,

you would understand

when I told you

that

I can't find that recipe anymore. 

 Poof.  Gone. 

So we settled for Better Homes and Gardens. 

I know, doesn't quite have the same feeling attached to it.

Oh well.

When making ONE pie with three boys, it is ALL about fairness.

Here they are, nicely taking turns putting spoonfuls of pumpkin in the bowl:

Here below, boy #2 is feeling threatened by boy #1's impending "hogging" of

said pumpkin.

Yes, just as he feared, boy#1 is taking far TOO much pumpkin

and taking FAR too much time doing so.

But wait.  Peace is restored.  I even see a bit of a smile.

If only for a moment...

 before the knock-down, drag-out fight over

a

wire whisk.

You've heard the phrase, "Too many cooks..."

Well, I think we lost some pumpkin on the counter along the way

or something...

Because this pie took A LONG TIME to cook.

Too much milk to pumpkin ratio?

We waited.

and waited

and then we made the whipped cream.

Boy #1 enjoyed the food mixer a little too much.

I need to find a new place to store it.

Once again, accusations of unfairness and neglect:

Followed by a beater of peace.

And finally...

after an hour of baking

(instead of the prescribed 25 minutes...)

The pie was done.

(there are no pictures because we were so excited we forgot to take one)

Buzz Lightyear approved.

I finally remembered my camera

and this is what  was left:

We saved you a piece:

But now that you know what it has been through,

and who it has been with

you might be relieved

that it

is

only

virtual.

Enjoy!

Happy Halloween!



No coffee. No pie. Just a whole lot of mouth sores :(

No coffee today.  It might have been dangerous.

See, I think I need to guard myself from ever expressing my positive thoughts and happy emotions because whenever I express them, BAM WHAM SLAM God knocks me to the ground, pounces on my stomach and dares me to get up.  At least, that is what it feels like.

Happiness, positivity MUST BE SQUASHED.  I am not allowed.

Spent these last three nights in the hospital.

Friday Andrew was kind of lethargic, like he tends to get the ninth or tenth day after chemo.  So I expected it, and took it in stride. 

Saturday he was really lethargic, and was on my lap almost all day.  I felt kinda sick too, so we both watched lots and lots and lots of cartoons.  (There are a lot of weird kids' shows out there!) He was running a low fever, about 100 degrees most of the day, but that is normal too, so I just thought we would ride it out.

However, about 8:30 pm he spiked a fever of at least 102.  I knew that he had no white blood cells in his body (the ones that fight off infection) because of the chemo.  And then I noticed his mouth was starting to look swollen.  Within seconds I began to think that perhaps he had a bad infection in there that had been spreading all day and was continuing to spread while I stood there holding the thermometer. 

So I panicked.  Starting throwing clothes all over my bedroom trying to pack my bag for the hospital, threw my credit cards all over the counter looking for the clinic phone number (which is on my phone...duh).  I was literally shaking and hysterical. 

So, lets just say the bag of clothes I packed was not thought out, or even matching.  There were some tops and some bottoms, and that was about it.  I forgot my computer, and my phone charger, and ran off to the hospital in a panic. (I never made it back home during those three days, so I got some new undies from Walgreens, and Andrew and I were mismatched and disheveled the whole time.  oh well.)

On the ride over, I was thankful that my lethargic son still had enough energy to sing along (and perhaps even make a few sad punching maneuvers) to "Eye of the Tiger"  while we drove to the hospital.  His amazing attempts to keep moving through the pain make me very emotional.

Turned out he did not have an infection.  I am so relieved.  But he had horrendous mouth sores, and still has them (but not as badly).  This was the worst chemo reaction he has had yet.  One of the most powerful of his medicines had not been given to him for three months because it interacts with radiation.  So he had a three month break, and when it was recently reintroduced, his body took it hard.  At least, that's my theory.

It was awful.  He was so hungry, but he couldn't eat.  He sat hugging his turkey sandwich for an hour before he gave up.  He fell asleep clutching a green frosted cupcake, which he had been bravely licking every now and then.  He stared at a chocolate chip cookie for 24 hours before he withstood the pain and slowly and agonizingly maneuvered it down his sore-infested throat.  It was horrific to watch.

Sunday morning he woke up with blood dripping out of the corners of his mouth.

And then while I'm in the hospital (after my mom brought me my phone charger) I get emails asking which "cancer support network" I want to donate to.  Do I want to support one that gives trophies and doodads to the siblings of cancer patients?  or how about art classes for cancer patients?  They all seemed to be trivial ways to donate.

HOW ABOUT...I tried to reply to the email but of course it was a noreply@ email. 

But what I wanted to say was SPEND THE MONEY ON RESEARCH.  EVERY LAST PENNY.  Don't spend it on cheesy trophies.  FIND A BETTER CURE.

I get so mad because it seems a nice charitable game to some of these people. 

I start to feel rage at the whole cancer community.  Are you so entrenched in doing what you do that your livelihood is at risk if alternatives were actually found?  I start becoming a very angry skeptic when I see blood dripping out of my baby son's mouth.

I have absolutely NO INTEREST in donating to any cancer organization that does not put the money DIRECTLY and EFFECTIVELY into the hands of those doing the research to find SOMETHING BETTER.  I need to find one like that, if there is one.

DISGUSTING. DISGUSTING. DISGUSTING. DISGUSTING.

I wish I had more faith.  I wish I had more trust.  I wish I were more positive.  But when you wake up to find bloody drool all over your son's pillow and he can't talk or eat and his cheeks are swollen up like a chipmunks because of "medicine..."  Well, it is damn hard to be positive.  And then I feel guilty for complaining.  Because really, my choice is bloody awful mouth sores or death.  Its a no-brainer, but still horrific.

People say we can hope because God is in control.  God was "in control" before Andrew got cancer.  I find very little solace in that statement.  It is hard to believe that God cares one bit.  It is hard to believe that anything God says about "calling on him" is real.  It all starts to feel like one big fat rationalized lie when you see the newborn baby in the room next to you, in the oncology ward, and his sad mother in a blanketed heap on the bed. 

And out of the other side of my mouth I beg and plead for faith and trust.   I pray that I will feel his presence and his hope and that he will heal Andrew.

And I was just feeling so peaceful and my mind had been cleared from the obsessing I had been doing!!!  I had relaxed and hoped and BAM WHAM SLAM onto the ground.  Pounced on.  How dare I relax?

I need to take up boxing.  Or Karate.  Or something where I can hit things and scream.

Too bad my back hurts like hell and I keep having to sleep on hospital beds.

Physical therapy first.  Then Karate.

So no pie today.  And no coffee.  No positive thoughts.

Maybe tomorrow...

Coffee at the End of the Tunnel

Happy Tuesday! 

How are you? 

I'm so glad you joined me for coffee today! 

I actually have some brewing this week.

I am in a much better mood than last Tuesday

AND

I haven't given the 5-year-olds on Sammy's playground a "talking to." 

Always a plus! 

If we were actually meeting for coffee this morning 

I might proudly announce that I remembered picture day! 

 It may be the first time since my children have attended school that I remembered
before driving into the school parking lot.  

Can you believe it?

Sammy is wearing a "solid color" and

carrying a completed order form in his backpack. 

 Progress.

Maybe it's just denial,

or maybe I can see light at the end of the tunnel,

or maybe it's just that life is starting to feel a little more normal,

and the heat of the summer is finally fading,

but I feel like my burden is lighter these days. 

I am guessing you might even sense that,

 if we were actually sipping our coffee together today.

I might also tell you that I am a proud Mama of a first grader

who is doing well in his class and behaving himself. 

Whew. 

Parent/teacher conference today. 

All is well.

I might ask about your parent/teacher conferences.

Have you had one this year?

How did it go?

They always make me nervous.

I might also tell you that

we spent last weekend in the hospital (for chemo),

and Andrew found some interesting things to do with his bald head:

Yup.  That's some PB& J up there.

Plates are for sissies.

He also found that his ears make excellent crayon holders.

And as I rambled on about Andrew's body decoration,

I might notice your stomach grumbling,

and admit that I was very close

to making a pumpkin pie 

yesterday,

but let my pre-schooler talk me out of it.

We made a puzzle instead.

You and I would both be regretting that decision

right about now. 

It was a Martha Stewart pumpkin pie

with real whipped cream on top.

Sorry :(.

But I do have a package of Duncan Hines Blueberry Struesel muffins.

They're from a box, but I love them.

I could probably whip some together while we chatted.

I might tell you that John and I took the boys hiking on Saturday for the

first time in months.

The weather was cool, and we weren't in the hospital!

Andrew was so excited to make it to the top!

with a little help from John.

So

I had a busy, stressful, happy, adventurous week

full of challenges

and triumphs

and ups and downs.

But overall, it was a good one.

I am so grateful

for the many blessings

and all of the love that

I get to give and experience.

I hope you had a week like that too.

Thanks for dropping by!

(Next time, I promise.

Pumpkin pie for sure.)

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The Bright Side: There's popcorn on the floor, and I don't have to sweep it up

On the windowsill in the hospital room

 Soooo...I have been dreading yesterday, and today, and part of tomorrow, for quite a while.  Back in the hoosegow...(hospital).  We have had three months away, which is amazing considering we were spending every dang weekend in the hospital during those first few months.  "Absence" did not make "the heart grow fonder" in this circumstance... However, I will admit, the hospital is not all bad. 

Sure, there are those things which are... the strange P-shaped pullout couch/bed which is the antonym of "ergonomically correct" (my poor back), the midnight and early morning visits from nurses scrambling around trying not to make noise, and, of course, the dull orange "cure" that is dripping through my son's veins (which is good, but also bad...).

However, I have noticed that there are some nice benefits, and I might as well focus on them, right?

1.  I am still in my jammies and it is 8:25 am.  No worries about what to scrape together for lunch, or half-naked boys who "can't find any pants!," or screams of pain because "he's singing about me!" or searching for Zoom-a-goo-glow-in-the-dark shoes that were "just here!" and now, are not.  (Although, I am afraid, my first grader will almost certainly be tardy...John called me at 8 am and the boys were still sleeping...and the lunches were still not made.  School starts at 8:45.  But here I am, in my jammies. Can't blame me.) 

2.  The shuffling nurses woke me up just in time to see the beautiful sunset (oops, I mean sunrise).  I'm a night owl.  I never see sunrises.

3.  I have had time to figure out what everyone means by "ISO" (well, kinda).  Yes, I know.  I keep hearing about them.  I see people put little notes at the bottom of their photos describing which aperture and which ISO (or are those the same thing?) they used,  and I feel photographically intimidated.  However, so far, I have not taken the time to figure it out.  So I did this morning, with the sunrise.  Maybe that wasn't the best of subjects? because all of the pictures came out looking pretty much the same? but at least I fiddled around with it. I am a little less in the dark. A little.

4.  I have had time to read the short story that my friend has been begging me to read. Albeit, "Mickey Mouse Clubhouse" was playing loudly in the background, so I'm not sure I got the depth of meaning she was hoping me to glean from it, but I did read it.

5. The boys ate popcorn in bed and then dumped the whole bag on themselves (and the floor),  and someone else has to clean it up...  (Come to think of it, the popcorn is still here, on the floor. No one is cleaning it up, and I keep stepping on it.  Maybe that one's a push? )  

6.  No dirty laundry or dirty dishes staring me in the face (except the cafeteria trays with left-over jello, chocolate milk and the chicken soup Andrew keeps rejecting.) 

7. I'm getting caught up on movies I have missed.  I just saw "The Blind Side" last night.  Finally.  I have also memorized all of the words to "Max & Ruby's Perfect Pumpkin" and the "three additional episodes."

8.  Plenty of Mommy-and-Andrew time.  I am the recipient of hugs and kisses and zerbits (a bit slobbery, but sweet), and I get to participate in thoughtful three-year-old conversations.  With a sad little frown, Andrew told me, pushing his scrambled eggs around his plate, that he could no longer be "Luigi" for Halloween because Luigi does not eat eggs, and Luigi does not go to the hospital.  We discussed.  

9.  We have a nice view, with a window seat (at least for a three-year-old).



10.  Tomorrow we will be able to scratch one more "chemo" off  the calendar.  Eleven down.  Three to go.

Out for Coffee

Good Morning!!

If we were actually meeting for coffee this morning, 

we would be meeting somewhere other than my home. 

 Maybe a cute bakery/coffee shop with yummy scones, muffins, and pastries?
I would order an iced, decaf, cafe latte and a gooey cherry turnover.
Yummy.


As you watched me get up to meet you,
you might understand my need for an outside venue. 

I'm walking like I'm 95 years old.  My back hurts SO bad. 

I need someone else to make the coffee and the goodies...

and clean the house.

It is probably from carrying this little guy

and a huge bag of supplies

("Max and Ruby" videos, coloring books, markers)

everywhere I go. 

And if I am not carrying him, he is holding my hand

and jumping

over cracks in the sidewalk,

or over the orange tiles (to the get to the yellow tiles),

or  lifting both of his feet off the ground

and hanging onto my arm

without any notice. 

 I am glad he has so much energy...

but yank, jerk, yank, jerk. 

My poor back.

We might talk about our aches and pains for a while,

until we felt old

and stopped.

Then I might try not to whine

that John was out of town all last week at a client,

while I was home alone with my bad back

and three wacky little boys

who never stop moving (ahhh!!!)

 

and how I was about to go

 cuckoo for cocoa puffs...

but somehow survived.

And I might tell you how I am so on edge this morning.

I found myself scolding a five-year-old for laughing at Andrew's bald head.

I scolded him loudly.  In front of three other five-year-old boys,

and his nanny.

They needed to hear it.

But I was shaking afterwards.

Then I forgot it was "plant day" at Sammy's school.

So once I signed him in, I went to the store and bought a plant.

I brought it to the classroom (20 minutes later) and found that he had already planted

a different plant.

Normally, this wouldn't phase me.

But today...

I felt like crying.

So I need this coffee break!!!

The good news is that the weather is cooler. 

Hooray!

The storm we had last week was followed up

with a sequel of golfball-sized hail

and more wind.

It was so fun.

We (I) sat in our driveway and watched it come down. 

The boys played in the hail until it started to make welts on their skin.

I might tell you that we were supposed to be in the hospital yesterday (and today),

but Andrew's blood hasn't fully recovered from the last chemo round.

Too few platelets

(his blood doesn't clot like it is supposed to due to the chemo).

So instead we (they) climbed trees

and played in the sand

and rode scooters

and swung on the swings

(and hoped Andrew wouldn't bruise himself!)

He didn't!

(This picture looks so sweet and nice

but it was right before they both started screaming

and hitting each other.

Someone sat in the other's freshly dug hole, or something.)

I might mention that I am still listening to the Wailin' Jennys nonstop

and driving my husband bonkers :).

(It is in my car, and in my kitchen, and on my ipod...)

I tell him it is my coping mechanism

and it could be worse.

Much worse.

I try to turn it down when he's around. :)

I might ask what music you play when you need soothing. 

As we were finishing up,

and you walked,

 and I hobbled towards the door

I would once again

thank you for coming

and tell you how much I enjoyed

this time

and this coffee

and you.

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Hat Catch-up

Thank you everyone for the sweet hats and care packages :).  I know I am slow to post these, but we are grateful and touched by your kindness with each box.

North Carolina

Arizona :)

Saskatchewan, Canada

Alberta, Canada

A friend of the family got us this one from Colorado

Our friends visited Yellowstone, WY

and Bar Harbor, Maine this summer

and got us these. 

Thanks again.

You are all so sweet.

To cry, or not to cry

I've been thinking about tears...

I've been making a lot of them over the past six months.

I have this ideal in my head that I shouldn't cry in front of my children; it will make them scared; it will make them worry; it will make them sad.  So I try to save the tears for private times and private spaces.  But sometimes...well, sometimes ideals are hard to live up to.

The other day while Andrew was in the outpatient clinic getting blood, I wrote this (tears streaming):

As the nurses pass by,
I raise my book to cover my eyes,
an obvious effort to hide the tears
and the pain
that no one wants to remember
are there,
hiding,
forced down beneath a smile
like a Jack-in-the-Box
below it's cover,
with the crank constantly churning,
threatening to burst out
at any moment.

I seem to be able to handle and repress the deep grief, the deep sobs.  I save those for John and his shoulder, or my own pillow. But the "in between," the tears that are more than brimming, but not convulsing, spring out when I least expect them.

And Andrew is usually the one to see them.  I know they bother him, so I try to mop them up quickly.  He will say things like "Stop that crying Mama!" or "Are you sad 'cuz we are in the hostibal?"  or "Are you sad because you don't wanna go to bed?"  Or when we are at home he might say, "Why are you crying, Mama? We are at home!"  He looks at me, exasperated.
 
I guess I cry in front of him a lot more than I wish I did.  What can I say.

But I'm learning how to answer his questions.  Initially I would just deny, and "suck them in," and pretend.   "No.  No, I'm not crying (sniff)."  But he is too observant and too smart.  He calls me out.

So now, depending on the circumstances, I use one of a few options:

Sometimes I just agree:  "Yes sweetie.  I am crying because we are in the hospital.  I wish we could be home.  But at least we are here together, right?" 

Or I explain,"I'm not crying because I am sad.  I am crying because someone said something nice to me.  Sometimes I cry even when I'm not sad." 

Or, I am honest (well, kinda):  "I'm okay, just a little sad."

And then, he says sweet things, but things that makes me feel even more guilty for crying.  Like, "It's okay Mama.  We will go home soon."

or "It's okay, Mama.  You don't have to be sad."

or just, "It's okay Mama (with a big hug)."

I don't want him to feel like he has to take care of me.  I don't.  But tears are tricky things. They make people want to take care of you.  They make others want to DO SOMETHING, even if/when you don't want them to.

I joked the other day that I need to hide my tears when I'm at the hospital because otherwise they will sic the social worker or the chaplain on me. (Truth be told, the chaplain is very sweet and has a Scottish accent, so I don't mind too much).  But I think the hospital must have a "CODE TEARS."  "Tears in room 6.  Tears in room 6. Must fix.  Must fix."  It is hard to watch other people in pain.  I get that. 

Most of the time when I cry, I just want to be left alone. But other times, I don't even realize how much I need someone to reach out to me.

Last week when it was Andrew's birthday I had such a hard time holding it together.  There we were, sitting in the hospital, on his birthday, getting chemo and it was just too much.  I spent the whole day crying.  (It is hard to hide from Andrew and everyone else for a whole day.) 

My nurse noticed and was very sweet (quite a change from "Ursula.")  She took me "under her wing" for the day.  And honestly, I needed it.  My tears were a message, and I couldn't hide it.  Thankfully, she interpreted correctly.

Sometimes the solution is just to cry and cry and cry.  But I can't to do it all the time, and I don't want to.

It is hard to balance it.  It is hard to control emotions that have their own sense of timing.  It is hard to cognitively force back tears, even with the best of intentions.  So Andrew will see me cry.  The nurses will see me cry...(and the social worker, and the Scottish chaplain, and ...whether I like it or not, many people will see me cry.)

But I continue to try to keep those "Jack-in-the-Box" tears hidden and repressed for those safe and private moments...

But then, when the kids are asleep, when the door is locked, when his shoulder is ready, when my pillow is positioned...  I turn that crank.

I turn that crank and let 'em spring.

I let 'em rip.

Time for a Coffee Break

I have so enjoyed dropping in on others for virtual "coffee,"
 I decided to return the favor.

My life and my blog have been serious for quite awhile. 

 I am in desperate need of a coffee break!! 

So here goes:

If we were actually meeting for coffee, this would be the music
playing as you entered my front door.

Hopefully the volume would be set just right:

I would later tell you that I just can't seem to get enough of this group.

  They soothe my soul. 

I love their harmonies and melodies.

In contrast to the mellow music, you would also be greeted
by three small, but nutty dogs who are desperate for attention,
and literally clamoring for it. 
I would apologize frequently, and shoo them away.
But they don't ever always listen.

So, red-faced, I would lead you into one of my favorite spots in the house. 
My favorite...but it is rarely used for anything other than
piles of clean laundry,  hide-n-seek, and boys gymnastics.

You can see, even now, that the ottoman is off-center. 

It has wheels... on a hard wood floor. 

 Imagine the sheer joy of my three boys. 

Imagine my perfectionistic frustration. 

As we sit down, you should not be surprised

if a little bald head pops out from under your chair, 

attempting to scare you with a giant R-O-A-R!! 

We will be sitting on his favorite hiding spot.

He might also tell you how he "rode down the rainbow and fell to earth." 

 He is obsessed with Mario Kart and thinks everyone else is too.

If we were to truly have coffee, it would be one of those lucky days when Andrew and I are both at home, breathing a sigh of relief

that he doesn't need chemo, or blood,

or anything else for the moment. 

We are free to just be. 

 An amazing luxury.

I might tell you about the beautiful double rainbow we saw yesterday, and how we played in the rain while it poured. 

And how I wish I had more time to learn about my camera settings so I could have done the rainbow justice.

The coffee would be from Starbucks;

I would have called you first to get your order. 

We only have decaf in the house. 

 "Regular" makes my thoughts race and my fingers tremble. 

Even just one cup.

 

I might tell you that I am doing okay.  I am trying to live each day at a time,

and enjoy the sweetness of each moment. 

There is a terror that I live with everyday,

 but it is not going to disappear any time soon,

so I am trying to live

around it.

I would ask about your family (I would want to see pictures),

and where you are from,

and what your weather is like...

because until yesterday's rain,

it has been SO HOT I can hardly stand it. 

  I want some colorful leaves and crisp cool mornings. 

 I would want to live vicariously through your descriptions of fall.

And as we finished our last few sips,

and walked to the door,

I would tell you that I was so grateful for this time;

for this time of relaxing and sharing

and forgetting for a moment.

Thank you for coming, I'm so glad you could make it.

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