Insomniac Blogging, Second Installment

It is Wednesday.  The time is 3:50 a.m.  I can't sleep.  Again.

--Last weekend we took the little cowboys to the Fort Worth Stock Show and Rodeo.

 Little Middle spent a long time looking at the bunny rabbits.  He took it as a personal challenge to pet those that had signs on their cages that said "Please don't pet me.  I bite!"  And yes, he dressed himself.

No responsible mother would ever allow her children to put one foot on this death machine.  Lucky for these two, I'm no kind of responsible and they had a blast.  I was worried at one point that Baby was going to throw up on his brother, but the ride was swinging them around so fast, that I couldn't really see much anyway.  Good thing.

All that swinging and sliding and walking and looking and eating and laughing and touching and smelling wore these cowboys OUT.  I love it when a day is so fun that they fall asleep on the way home.

BTW, we did actually take Goliath with us.  I don't know why I don't have pictures of him.  Well, I can guess....But he was there!  I promise!

--Speaking of Goliath,  it was on his behalf that I sat with a few hundred other parents with that deer-in-a-headlight look in a middle school gymnasium last night hanging on every word that the principal said.  That's because in about six months that's gonna be my son's school and my son's principal.  Are ya'll understanding me?!?  My baby boy is going to go to middle school.  There are monsters there.  And gym clothes.  And lockers.  And algebra.  Shudder.

--Every week I am more and more stressed out by Downton Abbey.  I am still just so very sad about Lady Sybil.  Sniff.

--I had my follow-up appointment with the mad-scientist neurologist.  It was by far the most interesting doctor visit I've ever been to.  After a series of fun tests that reminded me of Kermit the Frog's ordeal in The Muppets Take Manhattan, he said two things to me that pretty much summed it up:  "If I had to root for a cancer for a woman to get, it sure wouldn't be yours," and "What Dr. F wants to say to you, Mrs. H., but probably just doesn't know how to say it, is 'tough luck'."

--Driving to the hospital that day, I was following an overweight, balding motorcycle rider who appeared to have Tourette's syndrome.  That was disconcerting enough until I realized that he was using his right hand to steer his bike and his left hand to hold his cell phone to his ear.  When it started to rain, I got worried enough to change lanes.

--Seester, Reese the Niece, and Me:

--Valentine's Day is really such a girl holiday.  You can't fully appreciate the extent of that until you've tried to make it special for three little boys.  You can only put so many mustaches on a cardboard box until it gets embarrassing.

--I ran into a grocery store that is not my usual shopping spot to pick up a few items that we were out of.  I hate shopping in a place that I'm not familiar with!  First of all, what kind of place keeps the green tea with the wine?  And why would you put the bread in a corner as far away from the milk as possible so that I completely forget it and my kid will have to eat sandwiches made from leftover hot dog buns before the week is over?  Argh.  I have no bread, but I got a brownie mix!

--My self-preservation technique of hiding may seem very, ahem, elementary.  However, before you chastise me, consider this:  Really, truly, the only thing that went well for me this past week was that when I walked into Sally Beauty Supply and asked the teenage clerk if they carry wig caps, she said, "How many do you want?" Then she reached under the counter and produced a piece of nylon that I'm sure can do double duty as the "sock" at DSW when you need to try on shoes.  She gave it to me for free.  And I'm gonna wear it on my head.  IF I decide to come out of hiding sometime.

--We loaded up Hubby's truck and took a Sunday afternoon drive through the car wash.  He rolled the back windows down just enough at just the right time to get the boys soaking wet.  Funny stuff.  That led me on a trip down memory lane.  HSU friends...this is for you!  Once upon a time I was a carefree college girl who played in a silly mud volleyball tournament although I hate both mud and volleyball.  Afterward, a certain pal and I decided that the best way to clean up such filth would be one of those put-in-some-quarters-as-you-go-car-wash stations.  We took turns standing in the bay and hosing each other down.  I think we even did some of the colorful soaps.  My sons could not imagine their darling mother and Auntie Rachel doing such a thing!  Guess what's going on this summer's bucket list?

--I wish the Cracker Barrel had delivery service.

--Guess who's going to see Mary Poppins the Musical in March?!?!?

--I can say supercalifragilisticexpealidocious backwards just like MP does in the movie.  It's one of my many hidden talents.  Go ahead...ask me next time you see me.  My boys are amazed.

--"Typing Paper" seems to be the new color of my skin.  I need a makeover.  Or something.

--When I was in high school, I lettered in typing.  True story.

--This hereby concludes this morning's early morning edition of insomniac blogging.  I am now going for coffee, and LOTS of it.

Hair and Heartache

Every single morning, no matter how sick I feel, I get up and sit with my little cowboys while they have breakfast and get ready for their day.  I want them to understand that they matter more to me than anything that I have going on, including The Sickness.  It was not unusual, then, that I sat at the table yesterday with Goliath and Little Middle.  I looked a hot mess, after 3 days of a chemo-induced semi-coma.  The boys were thrilled to start their Saturday off with bowls of Cinnamon Toast Crunch and some Mom time.  At least, until they heard what I had to say.  It had to do with my hair.  How it is falling out--"thinning" is the term from the oncology literature--and has been for some time now.  How I think it's time to do something, but I don't want them to be embarrassed or have to explain to their friends....And before the rest of the thought could make its way out of my mouth, my sweet boys jumped right in:  "You can wear your wig when you go to church or to our school!"  "I know where your scarves and hats are upstairs.  Do you want me to go get them?"  "I'm not embarrassed.  If anyone asks why you don't have any hair, I'll just tell them it's because you have cancer and they better mind their own business!" (This from my fiercely-protective Goliath, with his eyes flashing--I dare anyone to cross him.)  And..."Mom, we think you're pretty."  

Oh, my darling boys.  I could barely keep the tears in while I hugged them, reminded them to put their cereal bowls in the dishwasher, and fled to the safety of my bedroom.  

My bedroom, with its soft gray walls and pretty blue bedding and pictures of happier days gone by, is where I feel safe.  Right now, that's my haven.  It's where I stay when I'm sick; it's where I go when I'm scared.  "Scared" is a feeling I am well acquainted with.  It goes along with "overwhelmed" and "lost."  The thing with my hair isn't really new; in fact, it's kind of the last straw.  It's been the thing that just this week has made me think, "Well.  Maybe I really should just hole up here."  It's been the latest and scariest thing that makes me want to run and pull the pretty blue covers up over my head.  Because in my world, there's all this other stuff...

The pages of my journal are filling up, in spite of myself.  Night after night, I write.  And I write and I write.  How can one person who doesn't even go out much have so much to write about?

That Other Heartache drags on, albeit in a lesser form.  There is so much fear wrapped up in it, and it has a powerful grip on me.

Drama.  And a tremendous sense of responsibility for other people's well-being and happiness.  Oh. My. Goodness.  Achieving and maintaining healthy relationships is exhausting work.

I asked Dr. F about a long-term prognosis.  It isn't pretty.  And you'd think that if you KNOW that you have a limited time to live, that you would proceed like Tim McGraw's "Live Like You Were Dyin'".  Only I think that for now, this chemo is the right thing to do, and it might give me more time.  But it also keeps me from yanking my kids out of school so we can all jump out of an airplane together.  I can't win.

A funny thing about being chronically ill is that you lose your sense of belonging.  My life is now measured in treatments and doctor visits, while the rest of the world carries on just as it did before The Sickness.  I don't know why it surprises me so much that my friends, my Bible Study class, my volunteer group...whoever! can function without me.   But they can, and I remain stunned.  

This life of mine, it's heavy. And right now, it's really, really dark.  It is every moment feeling dragged under, held down, gasping for breath after breath after breath.  It is Dory encouraging Nemo to "just keep swimming, just keep swimming," only it isn't funny at all.  It is pictures of what used to be or thoughts of what's to come that flash through my head on a never-ending reel, a constant reminder that with or without me, they'll go on.  It is the relentless cycle of sunrise to sunset.  I dread the dawning of a new day simply because the number of hours it brings to be conquered are overwhelming.  How does one start putting one foot in front of the other when she is already so far behind?

"But I pray to you, O Lord, in the time of your favor; in your great love, O God, answer me with your sure salvation.  Rescue me from the mire, do not let me sink; deliver me from those who hate me, from the deep waters.  Do not let the floodwaters engulf me or the depths swallow me up or the pit close its mouth over me.  Answer me, O Lord, out of the goodness of your love; in your great mercy turn to me.  Do not hide your face from your servant; answer me quickly, for I am in trouble.  Come near and rescue me."  Psalm 69:13-18

Insomniac Blogging

Insomnia is not my friend.  I'll just be minding my own business, sleeping the night away, and BAM!  Good morning.  That is my explanation for why I am blogging at 4:15 on a Tuesday morning.  Here's what's on my mind:

--This is my off week for chemo.  Give. Him. Praise.

--I wouldn't want to ruin a perfect track record of trekking down to the hospital every week, though.  So today I will make the drive and visit with a neurologist about this supposed "malformation" in my brain. 

--I googled said neurologist.  He appears to be cross-eyed, and he has a name that can not be pronounced by anyone speaking the English language.  I'm sure he's very nice.

--After that pesky appointment and the weekly blood draw for blood counts, I get to travel to Reese the Niece's house!!!  I desperately need to escape and be able to breathe deep this week. I am so excited!

--I took the little cowboys and their neighborhood buddies to the park yesterday afternoon.

--What is up with the weather?  It is humid and gross.  Much too Houston-ish for my taste.

--While I was driving to meet my cousin for lunch yesterday, I noticed an abundance of horse trailers and big rigs on the road.

--I miss my grandparents. 

--I feel sorry for those people whose job it is to dress up like the Statue of Liberty and hold up signs.  Does anyone really think, "Hey!  There's Lady Liberty!  I should pull over and get my taxes done!"?

--Valentine's Day is coming up, and I've been doing some crafting.  I finished my banner yesterday, and I am loving how my fireplace/mantle looks!

--I also made a wreath for the front door, a wall hanging with hearts, and I put together a centerpiece for the kitchen table.  All that Pinteresting and crafting left me longing to hang out with my super sister-in-law.  She is my go-to girl for all things decorative and cute.  I love you, Chels.

--While brushing my teeth yesterday, I coughed a little bit, and bubbles came out of my mouth, just like in the movies.  I immediately thought of Charlie Bucket and Grandpa Joe in Willy Wonka's factory, and I laughed out loud.  "Burp, Charlie!  Burp!"

--Someone in this house has grown his first armpit hair.  I'm not allowed to tell you who, though, because he is embarrassed and thinks it's weird that his mother wanted to see it.

--Off of I-35 between Dallas and Austin, there is this amazing Czechoslovakian bakery that is housed in a gas station.  If you didn't know to look for it, you would never stop there.  I know, though, that the best kolaches in Texas are in that little hole-in-a-wall, and stopping there is mandatory for every road trip between my house and Seester's.

--This is so me:

--While driving to Sonic with six little boys yesterday afternoon, we passed by the high school where classes had just been dismissed for the day.  A couple of kids were break dancing on the sidewalk.  The kids in my car were cracking up, while I was feeling some nostalgia.  I'm old.

Little Boys Are Wise and Witty

On Women:

"There's somebody who likes me.  She's a girl.  She's taller than me, but my shoes are bigger than hers."--Baby, age 7

"There are 3 things you need to get a good girlfriend:  Be good looking, be a Christian, and don't pass flatulence very much.  I'm probably not going to get a very good girl."--M, Little Middle's buddy, age 9

On Personal Hygiene:

"Man, his pit hairs are out of control!"--Goliath, age 11

On Calendaring:

"Friday is my favorite day of the year."--Little Middle, age 8

On Home Decor:

"Mom, we need those things that stick to pictures and make them not fall down."--Baby, age 7

We're A Team

Thanks to Martin Luther King Jr., we are finding ourselves faced with a long weekend.  Don't get me wrong--I'm with the crowd who thinks the guy was a hero.  I just wish that my kids didn't have to enjoy early release and a day off of school to observe his social trailblazing.

What's a sick mom to do?  My own mom and I loaded the little cowboys up and headed for the movie theatre, where we were guaranteed a couple of hours of peace and quiet.  We took the boys to see "Parental Guidance", the new Billy Crystal/Bette Midler flick about grandparents who arrive to care for their three grandchildren for a week.  The out-of-touch grandparents know very little about the kids' lives (or children in general, for that matter), not to mention the technology that pervades modern-day child rearing.  It's a sweet and appropriate movie, with just enough potty humor to keep my sons laughing.

Toward the end of the movie, there is a high-drama scene between the 12-year-old girl and her mother in which the girl yells, "I hate you!  I wish I had any mother but you!"  As a parent of a tween myself, I felt a familiar tightening in my stomach.  I forgot for a moment that the scene wasn't real, because I felt the agony of the mom as she watched her daughter run up the stairs and slam the door to her room.  How many times have I watched the back of my own son's head as he makes a similar retreat?  As many as I've second-guessed my mothering, and then some.

As Hollywood tends to do, the film was tied up so neatly at the end that you could put a bow on it and give it for a gift.  Everyone makes up, the grandparents revel in their new roles, and they all live happily ever after.  The tweenage daughter embraces her mother and says, "I didn't mean what I said.  I wouldn't want any other mother but you."

My Goliath, who was sitting next to me in the dark theatre, reached across and lightly punched my arm.  No words--not even a glance in my direction.  But I get it.  He knows that we are a team.  He was telling me that I'm doing OK.  I'm gonna remember the day that my son punched me.  I'm gonna hold on to that wordless affirmation with everything I've got, and I'm gonna run with it.  I don't do it all right--in fact, most days, I feel like I'm making a big mess of mothering.  But he's stuck with me, and at least for today, he doesn't seem to mind.

I Think That If I Get My Hair Cut, It Won't Be So Long.

Round Two began this week.  Going back to chemo after having last week off was super-hard.  I had a week of driving the little cowboys to and fro about the town.  I did a lot of cooking for my little family.  I played with my boys, ran errands, and even did my own grocery shopping!  "Normal" has never felt so nice.

But, as it always does, Tuesday came around again.  First up was a visit with Bruce himself, the almighty Dr. F.  My mom thinks that Dr. F greatly resembles Stephen Colbert, even to the point that she wonders what my oncologist is doing on television some nights.  Anyway...my time with Dr. F can be summarized with a quick game of "I Said, He Said."  Here it goes:

I said.......... He said

nausea.......... crackers

hair................ wig

headaches...... MRI

ouch!............. sorry

Sugar Land.....Thai food

Round One of Topotecan has come and gone, leaving plenty of misery in its wake.  The nausea and sickness factor can best be described as similar to morning sickness during pregnancy.  While I'm not throwing up, the feeling of being ill never quite lifts.  I feel hungry, but no food looks or sounds good.  I need to be drinking gallons of water to prevent dehydration, but small sips throughout the day seem to be all that I can muster.  Do you know how much energy it takes to reach over and pick up a cup of water?!?  More than I can spare.  Energy is a premium resource these days.  It must be preserved at all costs because it is in such short supply. 

My head aches.  I have noticed that headaches have become more frequent and more severe in the last several weeks.  Most mornings I wake up with one, and I have been taking alarming amounts of pain killers to stave them off.  Mentioning it to Dr. F seemed like the right thing to do, but it earned me a same-day appointment at the imaging center across the street for a MRI.

Unbelievably, I have never had an MRI before.  I would remember wearing a hockey mask in a coffin while a jackhammer is pounding in my ears.  I am seriously questioning which is worse:  the MRI or my known nemesis, the CT scan? 

The MRI results were fine.  There is no cancer growing in my brain (thank God!).  There is, however, a malformation that the test detected that is known as a chiari one.  Basically, it means that my skull did not grow big enough to accommodate my brain.  Pressure build-up occurs, which can be the cause of the headaches I am experiencing.  As a precaution, I will be seeing a neurologist soon to discuss treatment.  Until then, I am reveling in the I-told-you-so rights this news earned me.  I've spent years telling my brother how smart I am!

About my hair...I knew going in to this treatment that hair loss was a possibility.  Unlike the Taxol regimen I did a couple of years ago, hair loss with Topotecan is not 100%.  Most materials refer to the hair loss as "thinning", with a few unlucky patients going completely bald.  Honestly, I wasn't too worried about it...until I started noticing that my hair was everywhere.  Over the last two weeks, I have plucked zillions of hairs out of my sweaters and off of my shoulders.  I have swept them off the floor, brushed them off of my pillowcase, and rescued massive amounts from going down the drain in the shower.  Morning styling results in a mini-shower of hair raining down around me. I had to do something.

In discussing this predicament with my mother, I mentioned that I probably ought to make a trip to the hairdresser, because "I think that if I get my hair cut, it won't be so long."  Yep.  That's a gem.

So that's what I did.  My hair, which has not been touched by professional hands since my re-diagnosis last summer, has now been chopped off and coaxed to look like that of a healthy person.  Only I know that it is in such a fragile state, that if you look at it wrong, it might wilt right off of my head.  Dr. F kindly suggested that I pull out my old Taxol-era wigs, so I can be ready just in case.  The pretend hair is on stand-by.

If I think about it for any length of time, I am stunned--absolutely STUNNED--that this is my life.  This sick-looking, hair-thinning, sleep-round-the-clock girl is ME.  The face staring back at me in the mirror loves her children more than life itself.  She wants to eat Blue Bell for breakfast, read a book on a park bench, and travel 'round the world, but she's not doing any of it.  Because she has cancer.  Most days, I take it in stride because, well, I have to.  But some days, like today, when I cut my hair because it's falling out, all I can feel is dismay.  And fear.  And I wonder what ever happened to the old Allyson...and will she ever be back?

Happy Birthday, Goliath!

Dear Goliath,

It is a cold, cloudy day at our house.  I woke up early, made myself a cup of coffee, and sat down to wait for you.  I didn't have to wait too long--sleeping in still isn't your thing.  You came in the family room and gave me one of your famous hugs.  It used to be that I wrapped you up in my arms for a hug; now it's more the other way around.  You are perilously close to being as tall as me, and your feet are already as big as mine.  Many days I have "borrowed" your shoes so I could run out to the mailbox or turn on the sprinkler!

So...The Year You Were Ten was also The Year of our Lord Two Thousand Twelve, which we rang out earlier this week with a sigh of relief.  2012 was not kind to our family!  Although I wish I could erase the events of this year that were so devastating, I know that the experiences you've had--bad and good--are helping to shape you into the person God designed you to be. They are also helping to shape me as your mother.  I want you to know that I have never known greater sorrow, cried as many tears, or sat through as many sleepless nights as I have this year.  I also want you to know that in my never-ending quest to protect you and your brothers and to make "normal" happen for the three of you, I have found greater joy, deeper love, and firmer faith than I ever thought possible.   That, darling boy, is what I want you to remember from The Year You Were Ten.

Of course, while difficulties and disease have swirled around us, life has marched right on.  You conquered 4th grade and went right on to 5th, in spite of my disbelief.  It's your last year of elementary school, and the last year that you, Little Middle, and Baby will EVER be at the same school together.  Every morning when I drop you off I watch the three of you walk up the sidewalk and I just want to make time stand still.  Fifth grade has brought you a whole new set of challenges:  multiple teachers, new friends, girls!, and of course, The Film. The panicked momversations Ms. Krystal and I have had about our babies and their bodies deserve an honorable mention here, as they've gone a little something like this:

Me:  Do you believe this letter they sent home?  Don't they know these boys are still babies?!?

Her:  I can't believe it.

Me:  Are you going to talk to him about it?

Her:  No way!  Are you?

Me:  Of course not!  He's just a baby!  Dumb school knows nothing about 5th grade boys (grumbling)....

You did indeed view The Film, and that afternoon I was on pins and needles waiting to hear what you thought.  You came in from the bus stop, and simply said, "It was disturbing, Mom.  Very disturbing."  And you went off to your room without another word.

Since that day, there has been some talk of puberty/voice changes/girls!, but you have made a nice recovery and seem to be much more concerned with the plans you've made with your friends and what you're wearing.  In fact, I offered to take you ice skating today for your birthday because I know it's something you've been wanting to do for a long time.  You turned me down, opting instead to hang out around the house with your friends.  (I'm not sure, though, how you think you will play for the NHL if you never learn to ice skate.  I guess you can always go with one of your backup dreams:  professional hunter or Olympic shooter.)  You were pleased, though, with your new clothes from Aeropostle and American Eagle.  Santa brought you Nike Elite socks.  I have never seen anyone so happy about socks as you were on Christmas morning!!!

Speaking of Santa...this was the year that I burst your bubble.  Your dad was not happy with me, but you and I both know that I had your best interests at heart.  You have enough to worry about without having to wonder who to believe:  your pals or your parents.  You were so grown-up about it, though, that my immediate thought was:  "We can never go back to the way it was!", and I couldn't keep the tears from flowing.  Thank you for being gentle with me.

When you're growing up, you get to do more and more big-kid things.  Like riding your bike to Sonic with your buddy for lunch.  And trick-or-treating without your parents.  And reading books on a Kindle instead of turning actual pages. And going to camp.  I feel pretty privileged that I had the opportunity to tag along to camp this summer.  I tried to stay out of your way, but it made me feel better--a little safer, perhaps?--to be there to keep an eye on you.  And I think that you felt safe, too.  I know that it may not be my absolute best parenting, but I like it that you are more relaxed when I am with you.  It means that you know that you are my top priority--that when we are together everything is fine.

That's not to say that you want to be with Dad and me all the time.  Those times are becoming fewer and further between as you are learning to navigate and be part of the big world around you.  But I am confident that you are secure in my love for you, and that warms my heart. 

You want to know one of my favorite memories from The Year You Were Ten?  It was that Sunday morning in March when our entire family gathered at our church to watch you and Little Middle be baptized.  The white robe billowed out behind you as you stepped down into the water.  I knew that you were nervous, but you were determined to follow Jesus in that very public profession of your faith.  It was a big step that I hope will be the first of many.  I will never, ever forget the mix of love, pride, and gratitude I felt that morning.  Our God is so very, very good.

You know another way I know that He is good?  Because He let me be your mom.  You push boundaries sometimes.  You can be disrespectful.  You can be stubborn.  You can be sloppy.  You can be exhausting.  You can also be a sweetheart.  You root for the underdog.  You are a fantastic friend.  You have good ideas.  You are a hard worker.  You feel deeply and love fiercely--just like your mom.  We make a pretty good pair, I think. 

I hope that this day is made even more special by knowing that your mother thinks the world of you.  Every morning when you wake up, there will be a hug waiting for you.  Every night when you lay your head on your pillow, there will be a prayer prayed over you.  I will always be in your corner.  I will help you when you ask for it, and I will help you when you wish I would just leave you alone.  I will ask questions about your day.  I will insist that you make good grades, but I will understand when math gets the occasional upper hand.  I will keep taking you to jiu jitsu, even when we are both tired, because I know that it's good for you.  I will fight hard to get well because I want to be with you.  I will ring your doorbell before I come in to your room.  I will demand kindness and respect from you and for you.  I will continue to watch in awe as you grow, because you are God's gift to me.  These are my birthday promises to you, son.  I love you more than you can know.

Happy Birthday!

Love,

Mom