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.

Bottling It Up

Dear Cowboys,

 

It is quiet in our house tonight.  I am recovering from what is likely the last chemo treatment I will have, and you are spending your Spring Break week in West Texas with your grandparents.  It is nearly too quiet.  Your absence makes it easier for me to get in my much-needed nap time, but honestly, I miss the sounds of you slamming doors, rummaging through the pantry (because you are always hungry!), and shouting up and down the stairs.  It is lonely here without you.

 

I've been doing a lot of thinking, processing, and praying with the three of you at the forefront of my mind and heart over the last few days.  It is exhausting work, being down in the trenches battling it out with God.  He and I don't see eye to eye on a few things, but we certainly agree on this:  You three little cowboys are wonderfully made and deeply loved.

 

Mema has been great over the last few days to send me some pictures and videos so that I can keep up with what you're doing on your vacation, and I don't feel quite so lonely for you.  Indeed, each one makes me smile.  You know what I wish?  I wish that I could bottle up days like today for you.  Days where you chase goats in a brother rodeo and laugh your heads off.  Days where you dare each other to try a little polar swimming, Texas style.  Days where you are carefree and lighthearted.  Days where you are not burdened or hurting.  I want to capture THAT in a bottle, label it, and set it up on a shelf somewhere where it will be safe until the time comes that you might need it again.

I'm afraid that there is such a time that is coming, precious loves.  I can barely stand the very idea of it.  But tonight, in our quiet house, I am asking God to protect your tender hearts for just a while longer.  I am begging him for a little more time--a few more days of goat rodeos and playing outside and being little boys.  And of course, always, asking and believing for the miracle that will let me be the mom I want to be for you.

 

But you know what the real miracle is?  It's that I got to be your mom in the first place.  God could have given you to anyone--but he picked me.  I am the luckiest lady in the whole world.  I love you to the moon and back.

 

Love,

Mom

Unchanging

"The Lord is good to those whose hope is in him, to the one who seeks him."  Lamentations 3:25

I went to the hospital today not knowing what to expect, so I prepared for every contingency.  I half expected to meet with Dr. F and hear that the chemo was not working so I should go home.  I was ready to hear that the chemo had at least stabilized the cancer, so I packed my usual chemo gear (soft blanket, purple socks, Seinfeld DVD, phone charger) in case it went on as scheduled.  I made sure that Mom was ready to take notes and that Hubby had his questions waiting. 

There is no way I could have been prepared for what happened in today's appointment.

"A faith and knowledge resting on the hope of eternal life, which God, who does not lie, promised before the beginning of time."  Titus 1:2

A solemn Dr. F waved a handful of papers in my general direction, but neither of us bothered to read them.  We both already knew that they contained the discouraging news of the unchanging cancer in my body.  The cancer that stubbornly remains, refusing to be affected by any poison or toxin, and defiantly growing back when temporarily removed.  The cancer that, it seems, is there to stay.

With gentle words and tears in his eyes, the good doctor recommended that I return to MD Anderson as soon as possible.  Sweet Nurse Allyson had already begun working on setting up an appointment for me there.  Dr. F said that, obviously, the chemotherapy had not done what we had hoped: to eradicate the cancer.  It is highly unlikely that any chemotherapy drug will.  We are wasting precious time. Radiation therapy may be an option, but if I do it, any future surgery will be out of the question.

"Let the morning bring me word of your unfailing love, for I have put my trust in you.  Show me the way I should go, for to you I lift up my soul."  Psalm 143:8

He went on to say that another surgery may be an option.  The procedure would essentially mean removing any and all "stuff" that is left in my abdomen area. Details are sketchy to my untrained mind, but I understand enough to know that it would be a huge risk, and even if it is successful, would require a radical life change...definitely not what I want to do.

I went on this afternoon to the infusion room for a round of chemo.  While it is not shrinking the cancer, it may be stabilizing it enough to satisfy Dr. F until I can get to MDA.  The Human Q-Tip was racing around, and there was a gentleman several cubicles over who completely disregarded the TV volume rule.  Everyone on the second floor could hear his Spanish soap opera.  I spent most of my time there feeling like an outsider looking in.  I was thinking to myself, "Don't these people know that I AM DYING?!?  But they are still just acting like everything is normal...tending to patients and watching television and filling prescriptions, and my whole world was just shattered.  Again."

"Yet I am always with you; you hold me by my right hand.  You guide me with your counsel, and afterward you will take me into glory.  Whom have I in heaven but you? And earth has nothing I desire besides you.  My flesh and my heart may fail, but God is the strength of my heart and my portion forever."  Psalm 73:17

A lot of things changed today.  I went to the hospital this morning feeling cautious, but still hopeful.  Tonight, hope is hard to find.  Time is a precious commodity.  If I do nothing--if the option for chemotherapy is taken away and I choose to not go forward with surgery, in a matter of months the cancer can grow in such a way that I will be in an emergency situation that I will not survive.  I was surprised today.  In all the scenarios I imagined, it never occurred to me that my doctor would say, "I can't do anything else for you.  We have exhausted all of our resources" without actually saying it.

"I the Lord do not change.  So you, O descendants of Jacob, are not destroyed."  Malachi 3:6

God wasn't surprised today.  He knew.  He has known all along.  Tonight, while my heart is breaking all over again, He knows what lies ahead.  He knows what my choices are.  He knows the number of the days of my life and how many breaths I have left to take.  I don't feel like rejoicing tonight.  I am not lifting my voice in song or raising my hands in worship.  What I am doing is telling Him how I feel.  How I need more time with my little cowboys.  How I hated the tears in my mom's eyes and the look on my husband's face in that doctor's office today.  I am shaking my proverbial fist toward the heavens and asking WHY???  But I am also soaking up the Truth.  I can find comfort in knowing that while my little world is changing faster than I can keep up with, God is unchanging.  Today, yesterday, forever.  He promised to remain exactly the same.  I believe Him.  I don't understand Him, but I believe Him.

"There is surely a future hope for you, and your hope will not be cut off." Proverbs 23:18