A Different Kind of Trial

A lifelong dream came true this week when I landed in New York's La Guardia Airport.  I've always wanted to go see the sights, watch the people, taste the food, even sniff the smells for myself.

Of course, I have always thought that I would travel to NYC for fun.  My reason for this particular trip was about as far from fun as I could get.  In fact, I went to New York this week for a doctor appointment.  A last-ditch, end-of-the-road, please-God-let-this-be-the-one doctor appointment.  The third oncology specialist in a month. 

 

I am sick to death of doctors offices.  I am fed up with waiting rooms.  I never want to hold another clipboard, record my surgical history, report my allergy to morphine, or provide my insurance card again. Ever.  I despise thin white sheets, because they are NOT soft, warm, or sufficient coverings.

 

Nonetheless I found myself on Monday morning in a wing of Memorial Sloan-Kettering Cancer Center, not far from Times Square, anxiously holding a clipboard on my lap and coaxing my insurance card from its safe place in my wallet.  I checked my phone one more time to get a glimpse of the sweet faces of my three little cowboys.  It reminded me of how far I had come.  Instead of bolting for the anonymity of the city streets, I stayed put and allowed myself to be led to an exam room.

 

My parents and my Seester had accompanied me, and their presence calmed me.  The doctor was timely, and got right down to business.  She had reviewed all of my records (and believe me, there was plenty to review).  She repeated much of what we had already heard:  The Monster is evil.  It is aggressive.  It is really hanging in there!  Surgery is risky and not recommended at this point. 

 

Then she said something different:  "We have a new clinical trial that I think you would be eligible for."

 

*Disclaimer:  Scientists are a different breed.  I am not a scientist.  What Dr. G tried to explain in our time together seriously made my head swirl.  She made me think of my statistics professor in college, when all I wanted to do was pass the class--not even make a good grade, just pass--because listening to him talk was like trying to comprehend a second language.  I am a mother.  I understand snot and blood and poop and dirt.  I do not understand cancer.  Read on at your own risk.*

 

The clinical trial is a phase 3 trial, meaning that it is in the final phase of research before it can be presented for approval to the FDA.  The goal of a phase 3 clinical trial is to see if an investigational drug works better (or has fewer side effects) than the standard treatment.  This particular drug, known as MEK162, is an inhibitor.  Instead of killing actual cancer cells, it targets the cell growth pathway that is specific to low-grade serous ovarian cancer.  MEK162 is an oral medication that is taken twice a day.  Likely side effects include skin irritations, stomach issues, fatigue, fluid retention, and increases in muscle enzymes.  There are other side effects, but they are farther down on the "likely to happen" scale.

 

Now for the tricky part.  This clinical trial is randomized. As is true with all scientific experiments, there must be a control group.  All trial participants will be randomized by a computer system to receive either the MEK162 medication OR one of the standard first-line chemotherapies.  2/3 of participants will receive the MEK inhibitor; 1/3 will receive chemo. 

 

What does that mean for me?  Well, I've already done all of the chemotherapies that are on the list.  All with no success.  I'm not too eager to go back and do them again.  Actually, if I got it in my head to try chemo again, I would just call up dear old Dr. F and say so.  He would make it happen.  It's absurd, and I digress.  I have absolutely nothing to lose by taking part in this clinical trial.  I am already facing the worst case scenario.  What can a little phase 3 pill hurt?

 

I have already made the phone call to the site here in DFW that will administer the trial.  These things are never simple, of course, and I anticipate frustrating days ahead with more clipboards and more paper-thin white sheets.  God has been good, though, to answer my prayer for clear direction and to grant me peace in the middle of my life's biggest storm.  I am thankful for this sliver of hope.  I am thankful that I serve a big God.  And I am thankful for the wide open spaces and the drive friendly laws in TEXAS!

Insomniac Blogging: Sixth Edition

3:58 a.m. seems like a reasonable time to wake up.  Especially on a Friday, in the middle of the summer, when there is nowhere in particular to go and nothing in particular to do that day.  Gah!

 

*I love Thin Mint Girl Scout cookies that have been in the freezer.  I love them even more when the box of cookies is rescued from the back of the freezer where I put it in February, and the box is marked in giant black letters:  MOM'S COOKIES.  DO NOT EAT.

*Last week Texas tricked us into thinking that summer weather could be manageable, and--dare I say it?--even enjoyable.  This week July's true colors are blazing through.  I want to let the cowboys fry an egg on the sidewalk, but then I would have to go outside and sweat through supervising it.  Well played, Texas.  Well played.

*I had a very vivid dream that my family went to a wedding at my grandparent's old church.  While we were in the wedding, the sun disappeared and it started to snow.  It snowed so much, in fact, that I was afraid to drive home, so I let Goliath drive.  Then a bad guy started chasing us, so he drove us straight into the church library for safety.  Oops.

*When I was a little girl, my grandfather worked at said church.  The church had an "activity building" that had pool tables, foosball, and my favorite:  roller skates.  You know your grandpa loves you when he roller skates with you, then lets you drink all the Mr. Pibb you can handle.

*My sister-in-law is halfway through her pregnancy.  She is adorable, and my nephew is growing just splendidly.

*"Mommy, what is your dream?  Mine is to swim in candy."--Baby

*Next week the little cowboys and I are all going to church camp.  Except for the fact that camp takes place in Wichita Falls, where it is about 147 degrees in the shade, I am just as excited as the boys!  Maybe even a little more, because my roommate texted last night to tell me that she got SpongeBob hand soap for our bathroom.  Awesome.

*I did FaceTime with Reese the Niece this week.  She pointed at me and said, "Baby!"  Seriously, princess...I could not love you more, but just say "Auntie" already!

*Reese the Niece learned to walk.  In a move that is hilariously brilliant, she holds her arms out straight in front of her to keep her balance.  Seester sent a video of her being Frankenbaby, and I watch it 4-5 times a day.  Cracks me up every time.

*Last weekend I got to spend some time with my other niece and nephews.  They live in Virginia, and we rarely see them.  Each of them is delightful, and my boys adore them.

*In preparation for my appointment at Memorial Sloane-Kettering, I have to gather 4,759 pieces of medical evidence, including reports, slides, clinic notes, and discs.  The number is only a slight exaggeration.  Yesterday I picked up my initial diagnostic pathology slides from the hospital so I could overnight FedEx them to New York (how can it cost $53.24 to send an envelope?!?).  That got me to thinking:  How in the world do they store cancer?  Have they just had my grapefruit-sized mass in a Tupperware container since 2007?  Is it in a deep freeze down in the hospital basement?  Never mind, I don't really want to know.  Ew.

*I love a good rain storm, but I hate it when it rains while the sun is still shining.

*I am going to write a book entitled "Mothering Through Middle School".  In it, I will address practical issues that come up in those tumultuous years.  For example:  What is the correct response when your preteen sends you a text at 11:01 p.m. that says, "What do you do when your friend is hanging out with a girl and not you?"

*School supplies are out at Target!  I spent an embarrassing amount of time there earlier this week oohing and aahing over the perfectly arranged pencils, the bins of glue (white Elmers! rubber cement! glue sticks!), and the dizzying array of colored notebooks.  Any day that you can pick up a brand new set of Crayola markers for $.99 is a good day indeed.

*We have an unspoken deal with our freighbors that we will alert each other when door-to-door sales people come around.  I recently got this text from Susan:  "Salesman coming your way!  Orange shirt.  Watch out."  We hid upstairs until he was gone.  Everyone should have a good freighbor to watch their back.

*

Gus the Terrible.  Word.

 

*"Saving Mr. Banks" is slated for release in December.  I will be there!  My lifelong love for Mary Poppins is no secret, so I will be interested to see a movie about Mary Poppins.  That P.L. Travers was a tough old bird.  And Tom Hanks as Walt Disney?  Nobody better.

*"Practically perfect people never permit sentiment to muddle their thinking."--Mary Poppins







Making Decisions

There has been a lot of talking, praying, and weighing of options going on around here.  Hubby took a few days off work last week, and we spent much of that time discussing our future.  We have made some decisions.

 

I will not have another debulking surgery.  The possible benefits are minuscule when compared to the probable risks.  I want to spend my time not suffering in bed, but making memories with my family.

 

With Dr. F's blessing, I have scheduled two appointments.  I hesitate to use the word "final", but it certainly feels like they are final appointments.  Last chances.  End-of-the-road. 

 

The first one I went to today at UT Southwestern here in Dallas.  I saw a doctor whose career specialty is advanced gyn cancers.  She was extremely generous with her time and I could see compassion in her eyes.  She wanted to give me good news.  There was talk of pathology review and tumor classification, but in the end, she confirmed what we already know.  My Monster is rare--less than 10% of all ovarian cancer patients experience this sort of evolution of cancer.  It is strong, mean, and without a miracle, it will be nearly impossible to eradicate.

 

The second appointment I made will take place at Memorial Sloane-Kettering Cancer Center in New York on July 22.  My medical records were forwarded to MSK, and after review, my request for an appointment was approved.  There is much to be done in preparation for that appointment:  paperwork must be gathered, pathology slides from all four of my previous surgeries must be overnighted to the clinic, and arrangements must be made.

 

I have not anticipated earth-shattering revelations from either of these doctors.  Quite the opposite, actually.  After years of disappointing--no, crushing--tests, reports, and appointments, I know better than to have high expectations.  Instead, my ambition is simple:  I want to be settled.  I want to know without a doubt that I have done everything reasonable to fight a good fight.  I want to be able to look my husband, my little cowboys, and my parents in the eye and be confident that I did my best for them.

 

Make no mistake, friends.  This is not resignation, nor am I giving up.  I believe that God still does miracles all the time, and that He can heal.  We continue to pray for that miracle.  And I also believe that God has a good plan for me--even if it is cancer. 

 

These are scary days, yet I feel peace.  That is a good gift from a good God.

 

"Faith is deliberate confidence in the character of God whose ways you may not understand at the time."--Oswald Chambers