Tuesday, February 26, 2013

Three Month Results

Last night I had one of those dreams that seemed so real that when I woke up it took me a minute to realize that none of it had really happened.  I dreamed that I went to the Ballpark in Arlington to audition to sing the national anthem at a Rangers game.  The audition actually took place AT a game in front of a sold-out crowd.  I went out to the pitcher's mound, and then I forgot the words to The Star Spangled Banner.  But I didn't hesitate...I sang Amazing Grace instead.  A natural choice.  And somehow, it was phenomenal.  The crowd went wild.  Ron Washington had tears in his eyes. People were throwing their hats in the air and cheering!  The Rangers ran onto the field and offered me an exclusive contract to travel with them and sing Amazing Grace at every game.  I was just about to sign the papers when my phone rang.  I answered it.  It was Dr. F.  He said, "We got the scan results.  I don't know how this has happened, but there has been a huge mix-up and it turns out you never had cancer to begin with."  I said, "That's great, because I'm going on tour with the Texas Rangers!" and I hung up on him.

I've never hated my alarm clock more.

Unfortunately, the Texas Rangers did not call me today.  But Nurse Allyson did.  At 4:30 p.m.  It was a really long day.

The news is not the best, nor is it the worst.  The CT images show that the cancer is stable.  It is basically unchanged since the last scan I had in November.  Since I began the Topotecan regimen, the diseased areas have neither shrunk or grown.  The cancer remains in my abdomen, just as it was three months ago.

I do not know how I should feel about this news.  I know it could be worse, so I feel, I don't know...guilty? that I am upset.  What bothers me most, I think, is the idea of the wasted time.  For three months I have gone back and forth.  Three months I have spent the majority of my time sick or sleeping or incapacitated or unavailable.  Three months I have been around my boys, but not with my boys.  Three months.  That might not seem like such a long time when you are thirty-seven.  But three months to a seven-year-old boy?  That's a good chunk.

So....the inevitable question:  What Next?  Dr. F wants to order a PET scan to check on the metabolic activity of the existing cancer.  This will answer a few questions (hopefully) about how the chemotherapy has affected it so that we can make an informed decision about further treatment.  I will meet with the good doctor next Tuesday, March 5.

Tonight, my brain is a mess of swirling thoughts and questions.  I wish I could understand.  I wish I could see the big picture.  I wish I could look into the future and see my little boys all grown up to be men and know what the purpose is for the suffering they must endure.  My confusion and fear are real, but so is my faith.  I believe that my God is good, and that His love for me stretches beyond what I can comprehend.   

"Have courage for the great sorrows of life and patience for the small ones.  When you have finished your daily task, go to sleep in peace.  God is awake." --Victor Hugo

Saturday, February 23, 2013

Not Alone

I am closing the books on another week, yet again feeling quite fine to see it saunter its way out.  This week--oh, this week.  This was the third week of the third round of the Topotecan chemotherapy cycle.  All that really means is that the dreaded scan is drawing dangerously near.  Next Monday, to be exact.  February 25th.  Yep, that's the big one.  The day when one scan will supposedly give me answers to all of my biggest questions:  Is the chemo working?  Is the cancer growing?  Am I dying?  My anxiety grows with every passing hour.

That sounds dramatic, but it's really true.  However, let's back up.  I had the pleasure of my daddy accompanying me to chemo this week.  While I would never use the word "fun" to describe such an adventure, I don't mind telling you that it made me giggle a few times to point out the staff (who I refer to as the "cast of characters") and to gauge his reactions to things that have become old hat to me.  Especially when Q-Tip Tammy (an infusion nurse who resembles a human Q-Tip) raced by, cackling all the way.  She's something.

But, as it always does, chemotherapy worked its dark magic and tossed me into the sea of sickness.  I don't know why some weeks are more, well, blah than others, but this was one of those weeks.  The nausea was definitely more intense.  The temptation to cover my head and hide was stronger.  We had a thunderstorm on Wednesday morning, and I was actually angry that it didn't last longer.  How DARE God not let it rain 24 hours a day while I was feeling so....RAINY?!?  And then the sun came out.  The nerve!

I don't know if it is possible to describe what it feels like to be plunged--over and over again--into that sea.  For several days after my treatment, I sleep.  I lose most of my sense of time, depending on the alarm on my phone (which Goliath got hold of and changed to bark like a dog--how annoying is that?) to wake me up when the morning comes 'round so I can see my boys off to school.  A quick shower and fresh pj's, and all of my energy is used up.  That's it. I go back to bed, and depend on my mom to fill in for me.  

That's why it sliced a little deeper when the school nurse called on Thursday with a sick Little Middle in her office.  Yes, he had complained of a sore throat that morning, and yes, I had given him 2 Advil and sent him to school anyway.  No Mom-Of-The-Year Award for me.  Mom went to get him, took him to the pediatrician, and walked out with a positive strep diagnosis, prescriptions for antibiotics, and strict instructions for him to "stay away from your mommy because your germs can make her really, really sick."

They had no sooner made it back to the house than the school nurse called again, this time with Goliath in her office.  He had fallen and hit his head on the playground, she said, and he was behaving strangely.  If it was her child, she would want him to be close by and would probably get him checked out.  "Strange behavior?  He's 11.  That's what this kid thrives on."  Those were my thoughts, but I dutifully summoned my poor mother to make yet another run to the elementary school.

Turns out that "strange behavior" is dizziness, confusion, and affected speech among other things.  In the last 48 hours Goliath has seen the doctor twice and done both a CT and MRI scan.  Both scans came back normal.  The symptoms persist, though, and while thankfully we can rule out serious brain injury, we face some unknowns.  

At the pediatrician's office yesterday morning, Goliath was sitting on the table when Dr. B came in.  Dr. B did Goliath's baby well checks for the first year of his life.  While she was talking about outpatient MRI vs. hospital admitting, I could clearly see in my mind's eye my baby boy, totally loving me, needing me, wanting me to take care of him.  That baby boy may have morphed into a giant over these years, but some things haven't changed.

In the middle of all these physical trials, with me constantly fighting the temptation to dive for shelter under my covers, there has been a sweet and welcome point of relief.  Every single day this week, even if only for a few minutes, I have been reminded in a very real and tangible way that I am not walking this crazy and scary road alone.  I knew it when I had a mini-meltdown with my Tuesday-turned-Monday sisters and they rallied behind me over enchiladas.  I knew it when that rally cry extended to our men.  I've known it nearly every day for the last 10 days when the World's Grouchiest Mailman pulled in and delivered a card from a sorority sister or classmate from HSU.  The WGM doesn't know it, but his furrowed eyebrows only make it that much sweeter for me to pluck those cards from among the bills and junk mail. I knew it last night when we opened the door and there were three goody bags on our doorstep with cards that read "Get Well Goliath", "Get Well Little Middle" and "Stay Well Baby". I've known I am not alone every time my phone dings (or barks) with a text message that reminds me that someone is thinking of me and cares.  I knew it when I got a for-real offer from a friend who really gets it to shave our heads together in a united effort to show the $%#&@ cancer who's in charge...and then go get a pedicure.  I knew it when I received a "Sunshine Basket" from my friend Jaimie (filled with all things yellow), and a gift bag from Jana filled with things that, by her own admission, are "frivolous."  I know it with each yellow prayer gram I receive from a church I've never attended, written by a person who knows me only as a name on a list.  But that person believes on my behalf, and they go faithfully to pray.  That is powerful, is it not?

The heartache remains.  The dog is very old.  Bills must be paid.  The kids are sick.  The cancer is there.  Monday is coming.  Decisions must be made.  The fear can be paralyzing, if I let it.  I can listen to the lies.  Or I can swim.  It's against the current.  It's hard.  And I will get tired.  But I know that I am not in this alone.  And in these few moments, that means everything.

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion, and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. "  2 Corinthians 1: 3-4

Monday, February 18, 2013

Insomniac Blogging; Third Installment

It is Monday.  The time is 2:24 a.m.  I have been awake for 33 long minutes.

--First and foremost in my swirling thoughts is that there is no school today.  Why, oh why, (with all due respect to my teacher friends and to the office of the POTUS) must we celebrate every. single. post. office. holiday. that comes along by cancelling school?!?
--I got my first Girl Scout cookie delivery.  Oh, Thin Mints.  How I've missed you!  Operation Hide Mommy's Cookies is underway.
--One of our favorite shows to watch around here is Top Gear.  The American version, not the BBC version.  A couple of weeks ago, the guys competed based on sturdy 'ol classics--you know, the oldies, but the goodies.  The cars that no one drives anymore, but still talk about because they held up SO well.  One of the featured cars was this jewel:
The Chevy Caprice Classic!  This is identical to My First Car--yep, my 16-year-old pride and joy.  That car was a beast.  I thoroughly enjoyed telling the cowboys the story of how I once piled 13 of my band buddies into this car during a break from marching practice so we could rush down to the corner store for snacks.  No big deal.
--That story made my kids laugh.  So does this video:
--Speaking of goats, the weirdest thing happened.  During the chemo recovery days last week, Mom and I were watching Wheel of Fortune.  Well, she was watching.  I was just kind of present in the room.  Then, all of a sudden, while Pat was encouraging the players and Vanna was turning letters, I saw a goat head rolling across the bottom of the screen!  I swear!  And it was smiling!  Mom nearly died laughing because I was insisting through my drug/chemo haze that there was a goat on WOF.  Then she got worried because I was hallucinating--seeing goats, of all things.  But before the goat could eat Vanna's dress or ram Pat Sajak, I fell asleep.  End of story.
--I also had a new side effect after last week's chemo that I've never had before:  tingling in my face.  It lasted one day.  I called the doctor's office, but they've never heard of such a thing before.  Neat-o.
--Goliath and Little Middle went on an overnight church retreat this past weekend.  It was LM's first time to do a "big kid" event like this, so I may or may not have planted the idea for Hubby go as a chaperone.  Turns out I needn't have worried.  LM had a fantastic time, evidenced by the coffee with 9 sugar packets that he drank at breakfast on Saturday morning.
--Goliath refers to his church friends as "me and my gang."
--Goliath reported back that he and his gang had to sleep in the bathroom to escape a certain counselor's snoring.  No, it wasn't Hubby.  This is the stuff that church trip memories are made of.
--My Bible Study group has met on Tuesday nights for many years.  My sisters recently made a decision to move our meetings to Monday nights so that I can attend while chemotherapy is ongoing.  Love them.
--This is what date day looks like around here:

Gunpowder and lead, baby.  I desperately needed to decompress.  We spent almost 2 hours at the range, and the majority of that time was me shooting and Hubby reloading the magazines.  Yup.  I'll be back.
--It was my first time going to a gun range.  I realize now that most people do not wear a cutesy scarf.  Next time I'll try to go for a more toned-down, camoflage look.
--Downton Abbey put on a good show for the finale last night in spite of that last horrible scene.  After losing Lady Sybil earlier in the season, I wasn't sure that the writers could find their way again.  But last night Thomas finally did something human and right, Lord Grantham has a grandson and an heir, and that Edna didn't get to stick around long.  She was a hussy.  My predictions?  Anna will want to start a family, Mrs. Crawley and the good doctor will hook up, and Lady Edith will ultimately find true love with the newspaper man.  We shall see.  Also, I don't trust that Cousin Rose, but I don't blame her for wanting to get away from her insufferable mother.
--Baby:  Hey, Nana, what's a boxer's favorite drink?
Nana:  I don't know.  What?
Baby:  Punch!
--Baby:  "Mom, can I snuggle with you now?"
--My arms feel like spaghetti noodles.
--I made up my mind to do a hard thing yesterday.  To encourage me, Mom sent me this text:  "He is the provider of Xanax and cowgirl boots for such a time as this.  I love you."  She's the best.

Wednesday, February 13, 2013

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.

Sunday, February 10, 2013

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