Non-Insomniac Blogging: Part Deux

--The countdown is on to the end of the school year!

--Middle school is a shark tank, and 6th graders are guppies.  Also, being a parent of a going-to-middle-school kid is quickly becoming a full-time job.

--Goliath chose band as his elective for next year.  At the instrument introduction, he was to make a list of his top 3 choices of what he wants to play.  In the #3 spot:  tuba (who didn't see that coming?!?).  #2:  clarinet, and his #1 instrument choice was.....the bassoon.  Up until that day, I'm pretty sure he didn't even know what a bassoon is!

--To bassoon or not to bassoon?  That is the question that has consumed my son and me (but mostly me) for the last two weeks.  After some research, a face-to-face meeting with the MS band director, and a pros and cons list, the decision is made.  He will play the clarinet.  Ah, that boy!

--Just on the heels of the Great Instrument Debate was a fun little evening event entitled "Middle School Parent University."  This is how I know that MS is scary, and how I came to finally understand why in the world people homeschool their kids.

--Imagine a police officer who has an espresso with every meal and no volume control.  Then imagine him walking the perimeter of a classroom filled with wide-eyed parents, pointing his laser beam at a screen filled with pictures of narcotics and drug paraphernalia that is commonplace among middle school and high school students.  THEN imagine him hollering this command:  "Parents!  Repeat after me:  We have heroin in our town."  and that same wide-eyed group of adults stammering, "We have heroin in our town."  That, my friends, Freaked. Me. Out.

--Sonic has half-price shakes after 8:00 p.m.  A milkshake is sometimes the only thing that can help calm you down.

--Seriously....who orders a peanut butter & bacon milkshake?!?

--I am also wondering why we have Teacher Appreciation week at the end of the school year.  Several teachers at our school asked for--and received--school supplies. But what good does it do them now?  Seems like we would all be better off if we appreciated our teachers in February.

--The buttercups that have carpeted the sides of I-35 for the last month are beginning to wither.  That can mean only one thing:  summer is a'comin.

--I have learned that if I make a Starbucks run for Coach Hubby and Coach Scott before our boys' Saturday morning soccer game, the kids play much better.

--If your mother says you shouldn't slide down the banister of the stairs, there is probably a very good reason.

 

--I got to read to my boys' 1st and 3rd grade classes last week.  For my book, I chose Alexander and the Terrible Horrible No Good Very Bad Day.  On the first day of my assignment, I accidentally turned off my alarm and overslept by an hour.  The book was more than appropriate.

--Gus the Terrible has been out of town.  Ahhhh.

--Willie Nelson turned 80.  I love that guy.

--Authenticity in relationships is important.  It can also be draining.

--I had a Girls' Night Out with my little friend Kathryn and her mommy.  Kathryn and I agree on a few important things:

• The rolls at Texas Roadhouse are delicious.
• California is shaped like a banana on a map.
• 2-year-olds are kind of crazy.
• Reading yourself to sleep is the best!

--Greek yogurt is a weird food fad.  What was wrong with plain 'ol Yoplait?

--There is nothing like a baby shower to bring out the Pinterester within.

--I paid my son $10 to wash my car and clean out the inside.  Best money I ever spent.

--Silver Linings Playbook is a good, but tough, movie. 

--I got a new dishwasher for Mother's Day.  Yes, it was a necessity, but it still reminded me of this scene from "Father of the Bride":

 

"I mean, I didn't want to act thrown or anything, but inside I was. I mean, I thought something for the apartment...maybe a new clock, or a cool phone, or a great art book, or something...but a blender? I mean, what is this? 1958? Give the little wife a blender?!" 

 

--Quiet is one of my favorite sounds.

--There have been an abundance of blue jays, squirrels, and lizards in our yard lately.

--Two jobs I would never ever be able to do:  funeral director and dentist.

--Baby's class is working on a "Then and Now" project, which includes a "museum" of items from way back when.  Two of the items make me feel particularly old:  a floppy disk and a non-digital camera.  My kid can not grasp the concept of a roll of film, nor can he understand not being able to see your pictures the instant you take them.  Very old.



Facing the Future

This update is a hard one to write.  I've been dreading it and have, in fact, been putting it off.  However, procrastination is not going to change the facts, so it's time to put them out there for you, my friends, to know.

 

Monster lives.  He resists chemotherapy.  He has come back to life after four major surgeries designed to destroy him.  He is too big for radiation.  He is too aggressive and unpredictable for other common treatments.  He is a threat to other body parts and functions, which, once damaged, can not be reversed and could be life-threatening.  His location within my body makes nontraditional treatments questionable at best, and more like out of the question.

 

Monster is not going away.

 

In the last few weeks, I've had to make a difficult decision.  Since the debate was settled with a positive biopsy result, it has become clear that Monster intends to stay.  I have to change my thinking, my prayers, my outlook, my plans....my LIFE!....to accommodate that. 

 

After much consideration, prayer, counsel, and discussion, I have decided to opt out of further chemotherapy treatments.  While chemo may be maintaining Monster to some degree, it is not shrinking him and certainly not getting rid of him!  What it is doing is stealing from me.  It is stealing 3-4 perfectly good days every week when I can not function like ME.  It is stealing my energy.  It is stealing my spirit, my joy, and most of all, it is stealing precious time.

 

If the rest of my time on this earth is going to be shared with Monster--and right now, it appears that it will be--then I must make that time quality.  I want to spend that time being ME.  I am not a cancer patient.  I am a wife and a mom.  I am a daughter and a sister.  I am a granddaughter and an auntie.  I am a friend.  I am a follower of Jesus Christ.  I love music.  I like to laugh, good food, Mary Poppins, animals, wise sayings, mystery books, Target, and flip flops.  I must have my morning cup of coffee, my toenails painted, and a little bit of alone time every day.  These are the things that make my world turn.  I might have cancer, but it does not have me.

 

I have started on a new medication that I can take at home, once a day.  It blocks estrogen production, thereby starving the cancer cells.  (Monster eats estrogen.)  This pill is similar to the med that I took from 2010-2012, when Monster was on vacation.  The hope is that he will go on vacation again...this time for a long, long time.

 

Let's be clear:  This is not me giving up.  This is not me throwing in the towel or denying the possibility of God granting an 11th hour miracle.  This is me, facing the very real idea that I may not see my babies grow their first mustaches, go on their first dates, or nurse their first broken hearts.  I may not live long enough to be at my sons' high school graduation ceremonies.  I may not be here to dance at their weddings or rock my grand babies.  I need to be prepared for anything, so I want to get busy LIVING!

 

"She is clothed with strength and dignity, and she laughs without fear of the future."  Proverbs 31:25

Please, Lord, let it be said of me.

 

P.S.  I don't know how much dignity a lady with a bird on her head can possibly muster, but it was a beautiful afternoon to go to the zoo with my 3 favorite boys!

 

 

Alive and Well

It has been five weeks since my last chemotherapy treatment.

 

It has been three weeks since debate began among several doctors in a few different specialties in a couple of separate hospitals regarding what the status of The Sickness is.

 

The testing has been uncomfortable and inconvenient.  The waiting has been nearly unbearable.  (Do you know how hard it is to be productive if you are carrying a phone in one hand every waking hour of the day, waiting for it to ring?!?)  The professional disagreements have been confusing and worrisome.

 

Finally, FINALLY today the final answer came.  Monster is alive and well inside of me.

 

Scans are just pictures, and pictures can be tricky.  But biopsies do not lie.

 

I wasn't really surprised that the biopsy was positive.  What surprised me today was the emotion I felt.  I've been in this fight long enough now that I thought I had developed nerves of steel.  Great sadness washed over me as I listened to Nurse Allyson deliver the news.  I realized that I had allowed myself to imagine a cancer-free me, and my sadness was the equivalent of disappointment.

 

I believe in miracles.  I believe that the same God who raised Lazarus from the dead, turned the water into wine, and made the blind man see can also make me whole and well.  I believe that He is good.

 

I do not understand why He does not allow that healing to take place.  I do not understand.  And oh, how I desperately want to understand it.  I would give almost anything just for the assurance that all of this suffering--mine and my family's--is not in vain. 

 

But I suppose that would not really be faith, would it?

 

Blessed assurance, Jesus is mine.   

Insomniac Blogging: Fourth Edition

--Double heartbreak:  RIP, Margaret and Annette.  You were both greatness in your own arenas.

--What's up, April?  Today:  80 degrees and sunshine.  Tomorrow:  50 degrees and rain.  The channel 5 weather guy looks like he's going to have a stroke.

--"Why do people say radical?  They should just say rad.  Rad-i-cal.  It doesn't make any sense.  It's three syllables!"--Little Middle

--Little Middle and Baby played their first soccer game of the season last Saturday.  So serious!  They, of course, had a great time, and I'm sure that if we actually kept score, they would have been the winners.

--I am still waiting for definite decisions from MDA about the next step to deal with Monster.  There is some discussion going on among several different doctors.  The waiting is excruciating, but Monster seems to be behaving himself in there in the meantime.

--I try to imagine what my life would look like if there were no regular doctor visits, treatment schedules, needle sticks, or IV drips.  I can barely think of it.

--Check out these cowboys!

 

They're cute, huh?

 

--My alarm clock died.  I have used it almost every night for 20+ years, starting sometime in high school.  It lived a good life and served me well.

--"Oh Hannah! Oh Hannah!"--Baby, explaining to me the picture in his Bible of the people waving palm branches and praising Jesus as he rode the donkey into Jerusalem.

--The school nurse called me two times in one day for two different kids.  She told me that she was going to program my number into her speed dial; I told her I was going to put in with the school board for a raise for her.  We're getting to be great friends.  Oh--both kids got sent back to class and managed to finish the day.  I'm a super mom!

--"No one ever told me that grief felt so like fear."--C.S. Lewis

--We had an AC repairman out to our house last week.  Before he left, he used his phone to snap a picture of my cross wall.  Weird.

--"A lot of times I don't know how to end a conversation with an adult, so I just say 'Have a nice day.'  It's kind of awkward."--M, Little Middle's buddy

--My family goes through a LOT of bread and milk.

--Once upon a time I created a menu for family dinners an entire month in advance.  I still plan for meals, but I only do it weekly.

--I have never gone on a cruise, and I have no desire to. 

--Irish cream is my favorite coffee creamer flavor.

--There are a couple of fairly large lizards living close by.  Last summer we loosely determined that there is a boy lizard who likes to sun himself on our freighbors' bricks and a girl lizard who prefers our shrubbery.  Now that the weather is getting warmer, there have been lizard sightings.  The kids are thrilled about lizard hunting and carry around a giant bucket on Saturdays between our two houses.  The adults are warily keeping an eye out for baby lizards.  Ick.









Non-Insomniac Blogging

My doctor says that rest is essential for healing.  My insomnia, while somewhat useful for blogging purposes, is not helping my case against cancer.  She wired an Rx for an increased dose of Ambien over to Walgreens, and POOF!  I'm sleeping through the night...well, I'm sleeping better, anyway.

That doesn't keep my brain from observing, thinking, and wanting to state the obvious out loud.  So, without further explanation or ado, I present to you the first edition of non-insomniac blogging:

--I have flown to Houston and back twice in the last week.  I don't know how regular business travelers do it!  I woke up in my own parents' house and barely could remember where I was.

--Waiting for one flight, I entered the terminal and sat down next to a normal looking business man.  I glanced over at him and was shocked to see that he was knitting.  I think he was making a scarf.  When the flight was called, he packed up his creation, his knitting needles, and his ball of yarn into a Hudson News bag--and he blended right in with the crowd.  Well played, sir.  Well played.

--It would be awesome if there were moving sidewalks everywhere we went.

--I always scan the crowd sitting in the terminal to see who I want to sit by.  I eliminate anyone who is too talkative, dressed too nice (read: 5-inch heels) or too shabby (read: pajama pants), stressed out business people, women who are loudly arguing with their husbands on their cell phones, and anyone who is angrily watching CSPAN on the terminal television set (although it is on mute).  Yikes.

--Although I am not Catholic, I think I am a fan of the new pope.  He seems to be very humble and not swayed by the perks of the papacy.  I also think he bears a strong resemblance to Paul Shaffer from the CBS Orchestra on Late Night with David Letterman.

--I had this old commercial stuck in my head the other day:

 



--You can't watch that without thinking:

Two all beef patties,special sauce, lettuce, cheese, pickles, onions, on a sesame seed bun!

--Hamburgers have been few and far between for me since my last surgery.  It's a shame.

--In a small waiting room, manners matter.

--The radiology department was running about an hour behind when I was there for testing.  That was unfortunate, but at least I had this cuteness sitting across from me:

He was playing a game on his cell phone.  Bloop.............Blooop..............Blooooooop.  Smile.

--I met a man with breast cancer.

--Nurse:  Are you a water drinker?

Redneck Patient:  I'm a beer drinker.  Does that count?

--I was surprised to see Smoky Robinson on American Idol.  I truly thought he was dead.

--Nine hours after I left Houston, my cousin had her long-awaited baby.  Welcome to the world, Evie!  I already love you and I can't WAIT to meet you in person.

--I would love to quit my job as a cancer patient and travel with the Mary Poppins tour.  Magical.

--My third grade class picture is circulating on Facebook.  As if life isn't hard enough.

--Reese the Niece has her first little hairdo:

--Successfully rising to the challenge of entertaining themselves without screen time, there are right now three little boys in our downstairs bathroom telling ghost stories with the lights off.  I just heard one of them say, "It's my turn to sit on the toilet!"  Ah--boys.

Happy Birthday, Little Middle!

Dear Little Middle,

 

Today is  Little Middle Day!  Last night I tucked you in bed for the last time as an eight-year-old, went downstairs to my own bed, and wrote in my journal about how joyful you make me!  I knew, from the very minute I was aware of your existence, that you would be wonderful, simply because God made you.  But God outdid himself when he thought of you.  My life has been richer and happier since that wonderful March afternoon in 2004.

 

One of the ways you bring me joy is by making me laugh.  Goodness, you are funny!  Lots of children have called me "Ms. Allyson" over the years, but you are the only one who has ever called me "Mrs. Mom." (You refer to your father as Mr. Dad.)

 

 

It is no secret that you are not a morning person.  You seem to get your highest burst of energy at about 8:15 p.m.--no problem in the summer, but a definite issue during the school year.  I get tired of the morning battles, so it was a good bit of information you gave me when out of frustration, you shouted, "Friday is my favorite day of the year!"

 

After several years of eating Toaster Strudels faithfully for breakfast, you recently gave them up.  When I asked you why you didn't want me to buy them any more, you said, "I need to be eating more whole grains."  Of course.

 

This year you started working to break the world record for the most consecutive nights for someone to sleep in a sleeping bag.  You don't actually know what the world record is, but that doesn't stop you.  Your idea is a great one, and being a boy in a bag keeps you from having to make your bed in the mornings.  Bonus!

 

As you grow up, your relationships are growing, too.  You have proved over and over again that you are a kind and caring friend.  You like to have fun, but you have a tender heart and gentle spirit. I'm not in third grade with you every day, but I don't think I'm too far off the mark when I say that people like you.  I know I do...and no, I'm not just saying that because I'm your mother.

 

This year you have adopted an enthusiasm for the sport of hunting that is amazing.  You killed your second deer this season, a feat that few 8-year-olds achieve.  Suddenly, we are up to our necks (even more than before!) in all things camouflage, ammunition, and otherwise outdoor.  I will probably never go watch you kill, but I love that you are so excited about something, and I love that you share it with your dad and your brothers.

 

 

The Year You Were Eight was difficult for our family in more than one way.  I did my best to guide you and reassure you and your brothers through the scary days of last summer.  Often, though, it was your calm, sweet disposition that was my reassurance.  One of my favorite summer memories is from when we went to camp.  We were in a worship service with the campers.  I looked over, and you were standing on a chair at the back of the auditorium, singing your little heart out in true praise to our God.  It was music to his holy ears and salve to my hurting soul.

 

You have been a real trooper as we have navigated the murky waters of The Sickness as a family again.  I know it can't be easy to watch me go in and out of being the mom you know, but you remain about as calm as that river we swam in in Oklahoma last summer.  I have made it my life's mission to protect you and your brothers from the horrors of cancer, or so it seems.  But there are days, sweet boy, when we cuddle up and laugh at the latest episode of Duck Dynasty together, and I feel like you are protecting me instead.  Thank you for loving me so unconditionally--especially when I can't be the mom I want to be for you.

 

Little boy, every day with you is a delight.  But on this day, the specially designated Little Middle Day, my heart overflows with joy.  Being your mother...words can not describe the great privilege that is mine.  I am infinitely proud of you.  Every day that you go out to school or soccer practice or church or wherever...know that you are never far from my thoughts and you are always in my heart.  I love you.

 

Happy Birthday, sweet little man.

 

Love,

Mom

P.S.  I don't pretend to understand exactly what makes Nike Elite socks so cool, but I don't underestimate a boy's need to look awesome.  I'm glad you liked them, buddy.

The Monster Within

This week I traveled to Houston to follow Dr. F's advice:  "Get to MD Anderson as quickly as possible."

 

My parents live only about 20 minutes from the MDA campus, which is very convenient.  The day before my scheduled appointment, Mom and I were reading through the pile of reports that summarize the last pitiful nine months of my life, when a great idea struck me:  I could try to load the accompanying imaging discs (PET and CT scans) on the laptop and maybe I could see with my own eyes what is going on in there.

 

My mom, for the record, thought this was a terrible idea.

 

I was never that great at biology, and I couldn't decipher the CT slices. (Yes, slices.  That is not a typo.)  But my most recent PET scan....well.  That's a different story.  It was fascinating in a creepy kind of way.  I watched as the screen slowly revealed my brain, my head, my spine, my arms, and my legs.  It spun me around in a perfect 360 degree rotation.  With a few lucky clicks here and there, I was able to dissect the images until I was staring at IT.  Like a terrible Rorschach print, The Sickness--my cancer--seemed to glare at me witth the blackest, angriest eyes I have ever seen.  In that second, it went from being an obscure thing to almost taking on a personality.  He is angry.  He is fierce.  He is scary.  He is tough.

 

I call him Monster.

 

One look was enough.  The next day I delivered those discs, along with the written reports, to Dr. B.  My curiosity, if that's what you want to call it, is satisfied.

 

The appointment at MDA went as well as it could have, under the circumstances.  I learned that without a doubt, Monster is classified as "chemo-resistant."  Um, yeah.  I have gone through five chemo drugs in five years, and he keeps finding his way back.  There will be no more chemotherapy from this point on.  That feels good, because chemo is miserable, and it feels scary, because chemo is how you fight cancer.

 

I also learned that Monster should not be treated with radiation or further surgery, at least for the time being.  Both are high-risk and present opportunities for new difficulties to arise.  Surgery, in particular, would be nothing less than life-altering, and still, there would be no guarantee for a favorable outcome.

 

That doesn't seem to leave many choices, does it?  That's what I was thinking.  I told you that Monster is tough.  Here's the plan:  I am returning to MDA next week for further testing.  Those ultra-specific scans will tell Dr. B exactly where Monster is in relation to certain things so that she can make a decision about treatment that will (hopefully) not cause further damage to my insides.  Make sense?  I know.  Sigh.

 

There are, according to Dr. B, a few medication options for treatment.  One that she is considering attacks the blood vessels of the cancer cells.  Another one is a type of hormone therapy.  Really, though, there were two main things things that Dr. B said to me during our visit that mattered significantly.  She said:

"How are the boys?"

 

and

 

"Don't give up."

 

Don't give up.  That was just seconds after she informed me that Monster's main body part (he has about 4-5) is the size of a baseball.  Minutes after I told her that I can, for the first time since 2007,

feel the cancer inside my body.  I wonder if she could look into my eyes and see how tired I am.  I'm sure she could see straight through my brave facade and knew how sick I am of being sick.  But maybe, mom to mom, she understood that every breath, no matter how hard it seems, is one more I get to share with my boys.  For them, the fight goes on.