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.

Tuesday, September 17, 2013

Insomniac Blogging: Ninth Edition

Sleep, oh sleep,,,where for art thou, oh sleep?

*First things first:  I hated sixth grade math in 1987, and I still do.  Decimals are my nemesis..  I desperately want to tell Goliath that he will never actually use this skill in real life, but I realize that might be overstepping my bounds with the math teacher. You and and I know the truth.

*As long as I'm on a school soapbox, let me just throw this out there:  Those reading logs?  Tiresome..Seriously.

*I turned on the lights in the kitchen early last week and nearly stepped on a gecko. Ewwwwww.  I immediately took refuge on the top of a chair and summoned Little Middle to save my life.  Turns out the beady-eyed little guy was already dead.

*I love the beginning of school.  LOVE!  There is something so satisfying about buying a fresh box of crayons and a notebook with crisp white pages, just waiting to be filled.

*I wish I was still teaching.

 *Our school district not only acknowledges that technology is the way the world is going; they embrace it  wholeheartedly and are encouraging students to do the same. Within a few years, every student in the district will have an iPad.  The iPads will be distributed just like textbooks.  Students are expected to use their iPad for educational purposes, both in and outside of school.  4th graders are in the first wave of iPad deployment...Little Middle is beyond excited!  All we hear from him is "When I get my iPad, I will..." and "Can I download _____________ game on my new iPad?" and "My teacher said I don't have to share my iPad with my brothers!".  For the love of all things Apple--hurry up, iPad day!       

*My sons'  teachers spend more time with them than I do.  Their paychecks should reflect that, don't you think?  I don't understand WHY we pay a guy millions of dollars to catch a football, but beginning teachers make somewhere in the neighborhood of $35,000 (if even that much).  CRAZY.

*I also do not understand a world where Kris Jenner manages to get her own  talk show.  What does she possibly have to talk about?!?

*I saw a nun driving a F150 pickup truck one morning as I was taking the little boys to school. 

*In church during the sermon, Baby leaned over and whispered in my ear, "What is a belly button for?"

*I watched the new show Uncle Grandpa with the boys on the Cartoon Network.  I swear that I could hear my brain cells dying.

*The Summer of Shakes at Sonic is over, and I only had one shake.  Fail.

*I put out my fall decorations yesterday.  Well, everything except the candles in my lantern on the front porch.  I am afraid that those will melt.  Texas doesn't know that it should be cooling off by now.

*I wear a patch that is time-release pain relief.  The regular pills (even the heavy-duty stuff)  just don't cut it anymore.  Unfortunately, one of the side effects of the patch is itchy skin.  Hello, Benadryl.

*Hubby and I have both accused the other of talking in our sleep..  However, I think he won the prize on Monday morning.  My alarm went off at 5:45.  He immediately said, "Your table is up next!"

*Goliath is selling cookie dough for a band  fundraiser. In a few short weeks, Little Middle and Baby will join in, trying to earn money for their school.  Ugh.

*My new favorite snack is banana chips, dark chocolate-covered raisins, and cinnamon/sugar almonds.  Toss a handful of each into a sandwich bag, and VOILA!  Portable yumminess!

*My goal for the new school year is a pretty lofty one.  I am determined to pack healthy, more interesting lunches for the cowboys.  Packing lunches is #2 on my List of Hated Chores, beat out only by laundry.  I got into a bad habit last year of making sandwiches and tossing in a bag of chips,  the occasional applesauce, a juice box, and some type of dessert.  Every. Single. Day.  So far this year, I've done pretty well.  My boys are feasting on carrots, fish sticks, cornbread muffins, fresh fruit, and their favorite:Waffle Wednesday.

*Gus the Terrible has not been quite as terrible lately.  I wonder what is going on inside his head.

*I wonder if CL:R.really works the way the commercial claims that it does.     

*"If we could look into each other's hearts and understand the unique challenges each of us faces, I think we would treat each other much more gently, with more love, patience, tolerance, and care." --Marvin J. Anderson                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                           

Friday, September 13, 2013

"If she liked me any more, she'd sic the dogs on me."

Over the Red River and just across the state line, things are quiet.  Too quiet.  It has been nearly five weeks since I signed consent to participate in the MEK162 clinical trial.  On that day, the researchers seemed thrilled to have me.  The head doctor was extremely interested in Monster and our history together.  She promised that they would work quickly to obtain and dissect a tissue block from one of my debulking surgeries.  That did indeed happen, but with unfortunate results:  There were not enough cancer cells in the sample to qualify as measurable.  Monster did not meet their strict criteria.

I was slightly confused, but of course I granted my permission for them to try again.  A second block of tissue was FedExed to Oklahoma, and the investigational researchers got busy doing their thing.  After another week of waiting, I called and was given news that I did not care to hear.  Sample #2 was also a bust--the necessary slides were easily made, but none of them contained enough tumor.

"How can that be?" I asked Michelle the research nurse.  "There is plenty of tumor in there!  I can feel it!"

Michelle suspects that during each of the surgeries, the doctor cut out the tumors (which he was supposed to), but did such a good job that there was very little left over for remaining tissue.  In other words, I was greatly debulked.  That is good for surgery, but bad for research.

I should have started treatment by now.  I need to have started treatment by now.  Monster has made his presence known in a few new and frightening ways in my body.  Dr. F says that there is nothing to be done but to proceed with treatment as quickly as possible.

After all this waiting and receiving discouraging news, I was not quite prepared to make the decision that was presented to me yesterday.  I could a) be released back to Dr. F to receive the standard of care (read: chemotherapy), or b) travel to Oklahoma for a scan and intense biopsy.  I have already taken every chemo drug that is considered "standard of care" for ovca patients.  Each drug was unsuccessful.  I chose to pack my suitcase and go north.

Of course, nothing can be simple or easy.  The appointments must be done at certain times of the day with certain medical personnel.  That means more waiting for me while Oklahoma tries to get their act together.  With any luck, I will be able to travel next week.

Through all of this, Monster lives.  He is such a pain (literally!).  I think of him as being like those animated germs in the Mucinex commercials.  You know, the ones where they set up homes inside the sick person's body?  They stay there, relaxing in their easy chairs and inviting their friends in, until the miracle Mucinex comes in and kicks them back to the curb.  I feel like Monster has claimed my body as his own personal space.  He doesn't care that he is creating chaos.  He only cares that he has found a good spot, and he is fighting to stay put.

Although I am frustrated and discouraged, I continue to fight.  I get out of bed each morning, determined not to let Monster change my life, or even cramp my style.  I have three very good reasons, after all, to fight back...they call me Mom.