Saturday, September 28, 2013

Oklahoma (Not) Okay

I have just returned from a whirlwind 27-hour road trip to Oklahoma City.  I am sitting in my quiet-for-now house, absorbing the familiar surroundings and a little bit wishing I had never left in the first place.

I left Texas, my Texas yesterday morning with my mom.  Can I just take a minute and tell you how great my mom is?  She holds down a full-time job in which she pours herself into other people.  But...she is Mom and Nana first.  We all know it.  She insists on attending each doctor visit, regardless of time, location, or convenience.  She has traveled literally across the country with me on the search for a cure, and she is my #1 cheerleader.  She has lived in my home, taken care of my family, and stepped in for me when I simply could not do for myself.  She created an Allyson playlist just for this trip with my favorite tunes, and we listened to it going and coming.  There is no one who gives more, expects less, or has a bigger heart.  I love you, Mom.

Back to the story....Mom and I drove the 3 hours to OKC and made it there with a little time to spare.  We checked in to our hotel and I managed to get in a quick nap before we were in the car again headed for the OU Medical district.  I have to say this for Oklahoma:  The CT scan I did there was the easiest, most pleasant (if such a thing can be pleasant) radiology experience that I have had.  The staff was efficient and kind, AND, instead of the terrible barium drink, they only asked me to drink a regular bottle of water before the test.  It made for a much, much more comfortable exam.  I was in and out of there in record time.  I didn't leave empty-handed, either!  The sweet nurse loaded me down with a fresh bottle of water, a granola bar (to make up for not eating for 6+ hours), and a thank you card.  Texas, take note! There IS a better way!

We had been back in our hotel room for just a few minutes when my phone rang.  It was the research nurse calling with results.  The scan had disqualified me from the clinical trial.  Just like that, I'm out.  Yes, there is cancer in there.  But instead of being one (or more) large masses, there is what is known as "papillary smattering."  It means that there are lots of small pieces of cancer just...everywhere.  Monster is having a block party.

I couldn't help it.  I cried.  I have found that the longer the fight wears on, the less I tend to cry.  I suppose I'm used to it.  But never before have I wanted for the cancer to show up bigger or plainer on a scan...and the one time I need it to, it does THIS?!?  The news was more than my heart could bear.

We spent a long and noisy night in OK, thanks to a rambunctious group of retirees who stopped in during their bus tour  (Tour of what?  I am still wondering.) and the truck stop next door to our hotel.  Neither of us was sad to pack up and check out.  On our way out of town, we stopped back in at the medical building so I could retrieve the CT disc and copies of the report.  The research nurse met me in the lobby and provided this tidbit of encouragement:  There will be a site for the MEK162 study opening in several months closer to my home.  By that time, perhaps my cancer will have grown to meet the criteria size.  

Yes, and perhaps the farmer and the cowman should be friends.

I did not cry when I finally saw the Red River in the rearview mirror.  I would sum up my visit to Oklahoma by borrowing the words of a friend I once traveled with:  "This state is a complete disaster."  (**No offense, of course, to my friends with OK ties.  You can still feel free to eat your fried pies, cheer for your football team, and house your law firms inside your churches.)

So what now?  Good question.  Before I even left Oklahoma, I called Dr. F's office.  He again offered to set up chemotherapy, just to give me something to try.  I again declined, noting that if I have any more chemo--no matter where or what--I will have zero chance of EVER getting into the MEK162 trial, as I have already maxed out what they allow in that area.  Not to mention that any chemotherapy that is available to me as a "standard of care" I have already taken and found no success.  He was not surprised.  Dr. F suggested that I might try calling MD Anderson again, essentially starting over there with another doctor.  MDA has clinical trials that are exclusive to their organization.  For that reason, I will take his advice.

When Goliath was little, he loved to play hide-and-seek.  I would hide, usually with a baby brother on my hip and Abby Dog following closely, and he would look for me.  Some days I would deviate from the usual hiding places--in the shower, behind the laundry room door, underneath a blanket in the closet--and he would have to work harder to find me.  If it was taking too long to find me, he would just stop looking.  At age 3, he didn't have the courtesy to call out and let me know he was done...he just quit.  It was too hard, it was taking too long, he couldn't find what he was looking for.  (Would have been nice to know on that day I hid in the dirty laundry hamper.  I couldn't stand up straight for two days!)

I feel like that little Goliath now.  I am so frustrated!  The search has gone on for a really long time.  I just want to wave the white flag of surrender and be done.  I want to get back to what I want to do and forget what I have to do.  

This week's disappointment has brought back the old question that has nagged for such a long while:  What does God want?  I rarely do the "why me?" thing; I tend to think instead "why NOT me?"  I know that there is nothing about me that is better or more deserving than anyone else.  But why the ongoing suffering?  "Suffering" is a heavy word, but there is not a better one to describe the physical pain I have, but also the emotional anguish that I carry--and others share.  Sometimes I think that this would be so different if I had never married the man I love....or if we had not had children....or if my "Original Five" weren't so close....or if....
I were alone.
I HATE knowing that I am causing pain for others.  If I could walk away........

I would get exactly nowhere.  Cancer would still be there, suffering would follow me.  It is hard to follow God when you don't understand Him, isn't it?  It's hard to know what to do when you feel forgotten.  It is hard to trust when you feel let down.  

"He has shown you, O man, what is good.  And what does the Lord require of you?  To act justly, to love mercy, and to walk humbly with your God."  Micah 6:8

Lord, help me to do what is good.  I want to walk with you, and I need your strength in these difficult days.  I don't understand cancer, I don't like it, and I would love it if you would erase it completely from my body.  But I know that you have a plan for me and I believe that it is good.  Please help me to trust you.  Show me where to go and what to do next, and then lead the way!....because I will follow you wherever you go.  Amen.


PandaMom said...

In agreement, sweet friend, all I can say along with you is...Amen. Loving you and praying with you.

Giggles said...

Continued thoughts and prayers for you and your family.

kate fite said...

You answered a question for me; I needed to be sure you had someone to go with you. I know that mother/daughter bond, but we feel with you like family. Much love...

Anonymous said...

GOD Bless and keep you sweet Lady. I know your way is hard and hurtfull, but God IS good. HE does have a plan and sometimes HE just needs to hear you say you do know he is working in your best interests. Keep your Faith strong. GOD loves you and I love you and will add my prayers to the warriors you have praying all ready.

Anonymous said...

Psalm 34

"The righteous cry out, and the Lord hears them;
he delivers them from all their troubles.
18 The Lord is close to the brokenhearted
and saves those who are crushed in spirit.

19 The righteous person may have many troubles,
but the Lord delivers him from them all;
20 he protects all his bones,
not one of them will be broken."
God is at work!
Trust Him, listen to His voice, obey Him and let Him be who He is! Don't be afraid!

Praying for you, Beautiful one!

Liz said...

I am reminded of Psalm 139. Not the sweet "I am fearfully & wonderfully made" part that we all know. (Although that is true, it's not the part that drives me to my knees most.)

In the first part of the chapter, it says that whether we go down into the deepest part of the ocean or stand at the top of the tallest mountain, God is there. There is NO WHERE we can go that He is not with us. NO WHERE.

So thankful for His faithfulness even in the darkest, ugliest, worst parts of life...even when I don't see Him or feel Him. He's there.

Anonymous said...

You don't know me but I follow your journey because it moves me. I cry every time I read it and I look up at the picture above my desk of my dear friend who passed away from pancreatic cancer this last March. I miss her every day and I question why God took such a lovely wonderful person from us all. And then I remember it is she who is lucky. She has peace and joy and no more pain. She left a legacy of faith and kindness and a spirit for putting up a fight in the name of God that I can only hope I could muster a small percentage of if faced with the same chore. She left behind a loving husband and three wonderful kids and two parents who are exceptional in my opinion. She fought hard and she fought long. I am praying that God gives you time and mercy. I am praying that your little cowboys realize what an exceptional woman God gave them for a momma. You are an inspiration and even though I don't know you, I feel blessed to know your story. It has deepened my faith. I will pray for miraculous healing for you. You are an amazing woman.

Anonymous said...

I can do everything through HIM who gives me strength. Phil 4:13 I pray that during these truly difficult times you may feel the strength of HIS arms comforting you and lifting you up to travel HIS path. You are awesomely made and have made a difference in so many lives on your journey. You have been a part of my grandson's salvation and for that I have no words to express my gratefulness. I pray for you daily, please keep up the fight!

Anonymous said...

You don't know me, but I follow your blog. You are amazing, you are inspiring, and I'm so sorry this is happening someone like you. Just know that your blog has made me realize there are people in this world with bigger problems than mine, and they're handling those problems better than I handle mine. Thank you for reminding me to put my big girl panties on. Prayers to you and your family.

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FabricDiva54 said...

Thank you for sharing. My thoughts and prayers are with you. Your testimony of faith, trials and perserverance will touch many, I am sure.