Wednesday, November 27, 2013

Monster Madness

I have been sitting on the counter in my mom's kitchen for the last little bit, popping cherry tomatoes into my mouth like they are the last morsels of food on the planet. That's because I ate next to nothing today. I couldn't eat anything because I was too busy being treated like a cancerous piece of crap. Wanna hear about it? I'm here in Houston, where it is actually cold, ya'll. Well, cold by Houston standards, anyway. I'm wearing a sweater. It's unheard of. I'm here because I had a crazy lineup of cancer appointments at MD Anderson. I was there from 7:30 a.m. to 4:30 p.m. yesterday, and 9:30 a.m. to 4:30 p.m. today. It's been a long, grueling, unbelievable 48 hours. Yesterday was Test Day. I had blood work done. I did an echocardiogram, an EKG, x-rays, and last but not least, my favorite: The CT Scan. It went ok up until the end when the nurse was trying to start an IV for the CT contrast. She was not able to find a usable vein. She called a friend nurse, who found one, stuck a needle in me, and then watched the vein collapse. Nurse #3 came along, stuck me, failed, and stuck me again. Ow ow ow ow ow ow ouch!!!! After that, they gave up and sent me to the Infusion Therapy department, where I waited an HOUR for a member of "The IV Team" to save the day. Ridiculous. But Super-Craig easily placed the needle and got good blood flow. Once that was done, the test itself was far from enjoyable, but was manageable. This morning I put on my sweater and my tall black boots, and braced myself for the day. Mom and I got to MDA 40 minutes before my first scheduled appointment. I can't go into all the details here--you wouldn't believe it if I did--but it will suffice to tell you that I FINALLY saw a nurse practitioner at 2:30...more than 4 hours after my 10:10 appointment time. Unbelievable. I'm usually a pretty nice lady, but I wasn't feeling all that benevolent this afternoon. So much so, in fact, that I rounded out my day by filing a complaint in the Patient Advocacy department. MDA needs to get it together. The complaint came as a result of someone failing to do their job. We have been waiting for our insurance company to approve the clinical trial. Staff that I spoke with assured me that it would be taken care of by the time my appointment rolled around today. However, when I arrived at MDA today, insurance had approved only one of the two pills that make up the clinical trial. One without the other is useless. (Confidential to all you haters: This is not a political thing, an Obamacare thing, a Democrat thing, or whatever else you want to blame it on. It's just a stupid money thing.) An appeal has been filed, but if Aetna doesn't come to their senses, then the clinical trial is out. I also discovered that under clinical trial rules, if insurance doesn't come through and pay, then all of the tests that I did yesterday will be for nothing. They are only good for a short period of time. After that time is up, I will have to go back and redo every blood draw, heart check, and The Scan. Grrrr. One of the appointments that I had today was with a radiologic oncologist. (Try saying that three times fast!) Interestingly, this is the first appointment I've had with a radiologic onc. Ever. It has never been a viable treatment option--until now. The radiation intern showed unmatched kindness as he explained how it works, and more importantly, why I need it. Monster is growing...really, really fast and really, really big. Dr. Brown displayed the images from yesterday's CT scan. He patiently explained what I was looking at on each frame. What I saw was astonishing, and then was confirmed by the paper report from the radiologist. That report tells of "a large pelvic mass", measuring nearly 10 centimeters at its widest point. The mass, aka "Monster", is tangled up, wrapped around, and filling up every nook and cranny in my lower abdomen. He is even touching my tailbone! Additionally, there are two Monster babies in my lungs--one on the right, and one on the left. With such exponential increases in growth, radiation would be a palliative care option for me. There is some hope that it might help to control the symptoms that Monster has brought along. The always-amazing Nurse Allyson gave me a name of a doctor who works with Dr. F. I'm banking on him agreeing to do the radiation so I can be close to home. Two days before Thanksgiving, and this bombshell was dropped in my lap. It's not a surprise, per se, but there's something about sticking a number on it... 10 centimeters is a big enough space to birth a baby. 10 centimeters is approximately the diameter of a bagel. 10 centimeters roughly measures an average-size man's palm (crosswise). 10 centimeters is the diameter of a wiffle ball. Those are sobering measurements. While I was lying on the table listening to the machine instruct me on when to breathe, I closed my eyes tight. I did not really care to see the fake ceiling tiles that I suppose are meant to be calming. They had lovely cherry blossoms on them. In my mind, cherry blossoms don't belong in the fifth circle of hell. I chose instead to keep my eyes closed and concentrate on Truth. Snippets of Scripture played through my mind like an old recording: "You are precious in my sight...I will not leave you or forsake you...wherever you go, I am there...when you go through the fire, the flames will not touch you...I know the plans I have for you...I will strengthen you and help you...My yoke is easy and my burden is light...I will lift my eyes to the hills from whence comes my help." Those same pieces of Truth ran through my head as I looked at the pictures of Monster. His ugliness, his scariness stared back at me through the screen and made my heart beat faster. Even the doctor said, "He is angry." But I know this: Whether Monster is the size of a bagel or a beach ball, my God is bigger. My God is stronger. My God will not leave me to do this by myself. Every day brings me a little bit closer to the reality of Psalm 23: "Yea, though I walk through the valley of the shadow of death, I will fear no evil, for you are with me." I don't have to be afraid. Words like "palliative" don't exactly conjure up warm fuzzies, but I know that this hurting is for such a short time...and what waits for me is a forever that is so much more beautiful than even the prettiest cherry blossoms. He is worthy, friends. Oh, He is worthy. This Thanksgiving season, when on the surface it may look so dark, I will still be grateful. He has given me so much--SO MUCH--that I don't deserve. Jesus owes me nothing, yet He gave everything. Me and my wiffle ball-sized Monster will worship and give thanks. He is good all the time. THAT is TRUTH. P.S. My grandparents love me a lot. Like, a bushel and a peck. At age 38, that still amazes me, and is one of the most precious things I know in this life.

Monday, November 11, 2013

Happy Birthday, Baby!

Dear Baby,

It's Monday, it's Veteran's Day, and most importantly, it's YOUR day!  I woke you up this morning with a special birthday song, made better with my own lyrics, of course.    You were smiling before you ever opened your eyes!  And when you did finally bat your handsome eyelashes, you said, "My armpit itches."  Good morning, birthday boy!

Let's talk about that smiling thing.  So often I look at you and think of Buddy the Elf saying, "I like smiling.  Smiling's my favorite!"  You are the most smiley creature I have ever laid eyes on.  You smile in the mornings, you smile when you jump off the bus in the afternoons, you smile at bedtime.  I swear, happiness just seems to puff up around you wherever you are!  I don't understand it, but it is my single favorite thing about you.  You don't even know how many times you have changed my mood or calmed my soul with your inescapable cheerfulness.  You are one happy Baby boy!!!

You wanna know what else you are?  Roly poly, Tigger-bouncy, jumpy-jump bundle of boy.  You are almost never still.  Every morning when I come in to wake you up for school, you are wrapped tight--in a corner of your sheet.  All other blankets have fallen on the floor during the night because you move around so much in your sleep.  Your favorite move?  Somersault.  You can somersault with the best of 'em, even across the whole house.  On almost any given evening, while I am cooking dinner, I can glance outside and see you bouncing away on the trampoline.

You have a ton of friends, so you have plenty of social activity going on.  You go to more birthday parties than any kid I know!  Occasionally, though, you will turn down a playdate invitation just so you can stay at home with us.  You are content to simply be.  I think that's a great way for a person to be.  In fact, I wish I could be more like that.  Who would have thought that I would be learning things from my youngest son?

In between all your bouncing and your somersaulting, you make us laugh.  Like that day at camp last summer when the weather was particularly cool and very rainy.  You were so frustrated because you couldn't go to your favorite recreation activity.  You looked at the sky and said, "WHY does God have to cry so much at camp?!?!?"  I almost fell in a puddle laughing.  Or the morning not too long ago when I announced at breakfast that I would be washing the sheets and going to the grocery store that day.  You never missed a beat:  "Hmmmm.  You are not lucky, Mommy."  And last week, when I asked you about your homework, you sighed a great big sigh and said, "It's the same thing everyyyyy singllllle dayyyyyyy."  I'm sorry (sort of) that I laughed at you.  One more for good measure:  you recently had an assignment where you had to draw a picture of your favorite animal.  You brought it home, and I was quite surprised to find a billy goat on one side and a yak on the other.  Or, a "yack", as you labeled it.  :)

One of the things that hurts my heart for you is that you are still dealing with that blasted speech impediment.  After years of waiting, the school district finally agreed that you needed extra attention.  You started going to see the speech therapist at school at the end of 1st grade, and I know you hate it.  I know that because we had one of those everything-stands-still conversations about it.  You asked me, with tears streaming down your cheeks, why you talk different than other kids.  Why you try, but you can't make the right sounds.  I swear I could hear my heart breaking as I swiped at my own tears.  No mom ever wants to watch her child hurt, and if there were any kind of a magic fix, I would do it in a second for you.  Keep working, baby.  It will come.

Daddy and I have had the pleasure of teaching your 2nd grade Sunday School class.  There's not much that is more exciting to me than watching you learn about the Bible and the truths that God put there for us.  When we first started back in August, I was really surprised to find that you can quite easily navigate through the Bible.  We are building on that skill, and I pray often that you will find verses and hear stories that touch your heart.  You have great ideas about Jesus and the way that He wants us to live and treat other people.  I love listening to you.  He made you incredibly special, Baby boy.

I hope you are always happy.  Even as I write this, you are following my directions to finish your homework.  (Who gives a kid homework on his birthday, anyway?)  You just passed me with your homework folder singing, "I get to do my math homework!  I get to do my math homework!  And it's my birthday!"  May you always carry that same enthusiasm and zest for math homework--or whatever else your precious life may bring.  Our God is so good, Baby.  I know that life won't always be joyful, and you won't always get what you want.  But the God who made you with such meticulous care certainly has good things in store for you.  Your very existence is a testament to Him!  On the night you were born, I held you in my arms and counted ten perfect fingers and ten perfect toes.  I clearly remember how you were so very calm.  That was the moment that I KNEW the most clear definition of grace:  God giving you something that you don't deserve.  God gave me you.  I certainly did not deserve you, and I still don't.  But every morning when I pick up your covers off the floor and untangle you, I get my first glimpse of grace for the day.  What an amazing gift you are, sweet son!  An amazing gift.  And I am so incredibly thankful.

Happy, happy birthday, Baby of mine.


Thursday, November 7, 2013


On Monday afternoon, it was raining in Big D.  A promised cold front had pushed through (finally!) and brought with it a brisk wind and much-needed rain.  It was the perfect afternoon to snuggle up with a warm cup of coffee--pumpkin spice creamer included--and watch the Disney Channel with the cowboys.  Ahhhhh.

Except.....that's not what I was doing on Monday afternoon.  I was speeding across Dallas in the cold rain, trying to beat the rush-hour buildup.  My hair was a frizzy mess, my makeup was smudged, and my sweater was hanging halfway off because I couldn't decide if I was hot or cold.  I was a hot mess, on my way to the airport to catch a plane to Houston.

After weeks of trying, I was finally able to score an appointment at MD Anderson.  My regular MDA doctor rejected my request to see her, by flat out telling me that she had nothing to offer.  Instead, I was referred over to the Center for Targeted Therapy.  The doctor there, Dr. W, was one of those people who makes you feel dumb just by being in the same room with you.  Not because she was arrogant or talked down to me; she was just SO SMART!  It was almost like she was speaking another language, which I had to struggle to follow.  Dr. W also had two assistants:  Rosa and Roosevelt.  I think that Roosevelt is an awesome name.  (Hey, Brother and his Other!  Take note!  Just in case you want to change your mind....)  

So, the culmination of my meeting with Dr. W, Rosa, and Roosevelt resulted in an agreement to do two different things:

1)  Molecular mapping.  Samples of my tissue will be analyzed at the molecular level.  Through this analysis, they should be able to determine the exact abnormalities/defects that cause cells in my body to be "bad" cancerous cells.  With that information, they may be able to match me to a specific drug that would not normally fall within my standard of care.  For instance, I might have the same abnormalities as another group of patients with liver cancer.  I would then be able to be treated with medications for liver cancer.  Weird, but interesting.

2)  Clinical trial.  The molecular profiling will take a while--at least a few months.  The trial in question is an "in the meantime" solution--completely different from the Oklahoma fiasco trial.  This clinical trial involves 2 drugs, both of which have already been approved by the FDA.  One drug has been used for a long time with diabetes patients, the other has been used to treat breast cancer.  The trial is testing their efficacy when they are given in combination.  Both drugs are given orally.

Now, a few things you should know about this clinical trial:  The temptation to dance a jig is pretty huge.  Just the fact that she did not dismiss me but instead had some ideas is a cause for celebration!  But I need to step back and gather my thoughts before I jump off the cliff of crazy.  The truth is that these medications, even if successful, are not designed to be a cure.  They are meant to, at best, slow the growth of those wretched bad cells, thereby buying me some more time until, hopefully, there IS a cure.  (Worst case scenario, I'll endure funky side effects, but maybe I won't get diabetes or breast cancer.)

Knowing that truth reminds me of the sobering fact that cancer is what I have.  Unless God changes his mind or intervenes, I will have cancer until I die.  It may not always be as big, or as painful, but modern medicine tells me that this is my lot in life.  Many have prayed for my healing.  And it may still be done, but it has become pretty clear to my medical team (and to myself) that this Monster intends to stay.  

I am not publicly declaring my "I am thankful" list this month, but I do have one.  While the rest of the world is using social media to advertise what they are thankful for, I am keeping mine private.  But on Tuesday afternoon, when my plane landed safely on the runway in Dallas, and I knew I would soon be home with my babies, there was no question about it.  I am thankful for something.  Something to do.  Something to take.  Something to aid in my fight.  Something instead of nothing.

I don't claim to know God's plan.  I don't understand why he chooses to withhold physical healing.  I don't like my situation, and there are a lot of days when I don't say, "Your will, not mine."  And still...He loves me with a depth that I can not comprehend.  He values me to a point that I can not understand.  He is faithful to provide for me--whether that be the miraculous healing, or a small "something", He is good.

P.S.  This is for sale in the Dallas airport, as if the world needed reminding.  Poor taste, Dallas. Seriously.