When the Bottom Gives Way

Most days we walk and stand confidently on whatever surface we are on at that given time.  We tend to find ourselves sturdier on concrete than we do on an old wooden bridge, but we stand firmly knowing the bottom underneath us won’t fail.  What happens on that day where the bottom underneath us does give way?  Do we say we are never standing on that surface again, that we are never trusting that surface again….or do we figure out a way to stand back up and take “faith” in that surfaces ability to withstand our weight…our burdens…our life?

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This past Friday, my beloved RRP community lost one of its brightest stars.  The bottom gave way for many of us, most of us.  That unwelcome reminder of the disease and all of its ugliness.For those of us with pulmonary involvement, it was one of those moments you wonder if you will be able to take your next breath.  I originally considered blogging specific to the RRP event of last week, but as the days have unfolded, I have found more questions regarding faith, God, the unknown….finding joy.  Not all my own questions, but a collection of questions from those in this special community that are working earnestly today to just regain the footing…..where the bottom gave way.  Then, I see these are not questions just for this community, but questions being asked daily, moment by moment….what to do when the bottom gives way.

Personally, my footing has been shaky for a few months.  I won’t go back into the details, but losing my Mother, a major life move and then learning of the progression of my disease…well….the bottom was barely hanging by a thread.  So, now I find myself consumed by my own mortality…my own unknowns….and consumed by this compelling need to find a better way….refusing to accept the  known…it’s clear it doesn’t work.  Questions to God such as, “Show me a purpose in all of this,” “Show me how this all fits,” and “Why?”  Most of all, as many in my community have expressed, finding “Joy.”

Life can kick you straight in the gut somedays.  It will knock you off your feet and send the bottom falling into the great abyss.  So, how do you get back up?  How do you function in the period between “standing firm” to “standing back up?”  What sustains you?  Clearly, death is not an area any of us are equipped to process on our own.  Just as the prospect of death is too much for a human to bear.  It’s clear we have to have something more.  It can’t just be on our own strength.

I’ll be honest.  I was one of those back in the day that would get so incredibly angry at God for taking the life of a child…cancer, RRP, tragic accidents….whatever it was. it was really only in the past couple of years that I began to see it in a different way.  My God, my savior, he mourns just as we mourn.  He grieves with us in illness and in death.  I have to know that when the fall of man took place, that fall was all of mankind.  His perfect creation forever ruined.  That brought us disease, pain, hunger…the very things we pray to end.  A world full of sinful mankind has unleashed  a world of sin….and I may never understand how or why….but I have to trust that in some way…at some point in time…everything bad will be used for good.  I have to trust this on the days that my tears and my weak human heart and mind are upset, angry, and finding anything but joy.

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I have to trust when I am paralyzed with fear or anger or hurt…that God will hold me up when the bottom gives way.  That when I think it’s impossible to take one more step, that He moves my feet for me.  I, in turn, have to be willing to let God then use me in ways I don’t see how I am even qualified for or how I even can find the strength for.  Where I find my trust is without borders.

I have to trust these words found in Romans 8:26-28 (The Message)

Meanwhile, the moment we get tired in the waiting, God’s Spirit is right alongside helping us along. If we don’t know how or what to pray, it doesn’t matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God. That’s why we can be so sure that every detail in our lives of love for God is worked into something good.

How to you manage on those days the bottom gives way?  And how do you find the joy in the midst of such pain and sorrow?  How do you find the faith that allows you to trust what holds the bottom together?

Fighting With, Instead of Against

“I would rather have a man chasing Jesus, than a house full of stuff.”  War Room, Elizabeth

As very likely, one of the last person’s on the planet to do so, I saw War Room yesterday.  I had heard the hype, but honestly went in expecting what I had seen in other Christian movies as far as how it would be formatted. Yesterday, I realized that  Christian writers are getting bolder, directors more unafraid to appease every audience member….this movie was truth. It reached out and said, “You are going to come into this experience with the characters.”  Each of us, whether we realize it or not, are a character in this movie in our daily lives.  That’s what this movie leaves you with….you will identify with a character and see all of your holes and the thin fibers holding those holes together.  This is irregardless of where you are in your Christian walk.  I don’t see how you can see this movie and leave thinking, “I am all good.  I’m great actually.”

Miss Clara was the character I kept desiring in my own life.  I want a Miss Clara.  She’s that woman bold enough to confront you, bold enough to shake you at your core and humble enough to be transparent with her own life to change yours.  You can’t act the passion she exuded in the scenes where she cried out to God and to Christ to do great things, mighty things….where she gave Him every ounce of praise in her entire body.  The casting of this movie, in her character, got it right.  You believed her.  She was real.

Elizabeth’s character could be any of us.  That mom so caught up in her career, her own wants and ambitions and so full of bitterness and anger towards things, that she misses the entire point of our life.  I think my favorite two scenes with Elizabeth were when she received the text regarding her spouse being seen at dinner with someone other than herself….that moment of brokenness when she literally had no strength left in her and she fell to her knees….that moment each of us have experienced at least once in our lives…that  moment where you can physically feel Christ taking his hands to raise you into this embrace.  That moment that you do not think you will survive, but you do and come out stronger on the other side of the battle.  It’s that moment when you stop fighting against God, and start fighting with God.  For her, it was the moment she realized, as Tony’s wife, she was powerless to change him….and she had to admit and ask for forgiveness for her failures and give her spouse to God…totally let it go.  Not hold on to a single string. Everything-released.  “The world desperately needs grace-grace from each other but ultimately the grace which can only be received from Jesus Christ.” Miss Clara’s words and that simple question she had asked earlier, “Does he not deserve the same grace that Christ has given to you?” Great scene.  Next, it would have to be when Elizabeth saw Danielle’s closet.  That moment that every parent has when we realize our children repeat what we do…in magnified form.  Good or bad….we are their example.  It’s not our talk that they emulate, it’s our actions.  Elizabeth’s heart change towards her family, her husband…and that moment where she tells Satan to get out of her house.  A heart change….and her world changed for the better…even if painful at times.  Learning that her job was simply to pray for her husband…to stop doing God’s job and get out of God’s way so He could do His job.  How many times have I stood in God’s way?  When I did, what was the outcome?  When I moved over, what was the outcome?  If you are like me, when you move over…well, that’s when miracles happen.

Most heartbreaking moment for me was when Danielle told her mom that she thought she just loved her a little.  And then began asking those questions you can’t answer if you are not present….you can be physically there and not be present.  How many of us parents are so busy chasing a dollar, more stuff, more retirement that we miss what matters….the name of a child’s team, their award, their newest skill…..the little things that are the big things?  We call it “taking care of our family’s future” but at what cost?  If we miss the little things….do we even know the big things when they come?  Is that pursuit of career success coming at the expense of the family’s success?  God isn’t going to be handing out any “Top Sales Person” awards in heaven…but He is going to be holding us accountable for our family…what we did with that blessing He gave us.  How we loved.  How we knew Him.  Knowing Him in a real and passionate way, well….seems all our issues start to fall away.  Trusting Him, more than we trust our own control.

I won’t go into Tony, as I don’t want this to be about the faults of a man….but…His brokenness in that moment he realizes he has nothing left but Christ and his family….and that because of Elizabeth’s heart change, their reaction to his failures has been anything but what he expected.  Seeing what he gave up in his pursuit of career goals….greed.  I do not know the heart of any man….but I do know the heart of a woman.  That moment he just broke into Christ’s arms…..”I would rather have a man chasing Jesus…”  I bet if we asked men…they had rather have a woman chasing Jesus too.

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I could go on for days about this movie.  I guess, as  a Christian, it was more than a movie.  It was an instrument used by God to speak to me…and so many others.  I don’t have a War Room…and I honestly don’t know if I could sit in a small closet….but….I will take those notes on the wall to heart.  Specific things.  I will make me a record of “Answered Prayers” to remind me when I feel as if God isn’t hearing me.  I will remember the power of always praying for your spouse.  Not for them to act like you want or not do such and such…but praying for them to be God’s…to be His.  I will begin to ask God for a Miss Clara.  I have never asked, so why would I have a Miss Clara?  I will continue to pray for my kiddos, their spouses, my babies….their safety, their hopes and dreams, their hearts….their love for Jesus.

Points taken from the movie (just a few) that everyone should commit to heart:

  1. Daughters find their value in their Fathers (earthly and Heavenly)-As Tony began to see and invest in his daughter, her confidence increased.
  2. Marriage is based on Christ-not us.  “I am His before I am yours. And because I love Jesus, I’m staying right here.” Elizabeth
  3. “I shouldn’t fight God, because He always wins.” Miss Clara
  4.  “If you want victory, you must first surrender” Miss Clara
  5. “People are always leaving Jesus out of everything and that’s why we are in the mess that we are in.”  Miss Clara
  6. Your spouse is not your enemy.  Don’t make them to be the enemy.  The Devil is the enemy that comes to steal, kill and destroy.
  7. The lingering regret that never leaves when you don’t answer God’s call.
  8. Not once, even if the mud of bitterness, did Elizabeth talk poorly of her spouse to her child.  Not once.

Like so many others, I sit here today with a movie in my head…and Jesus in my heart.  A heart that will strive to be a Miss Clara as it ages and grows.

We, as Christians, get so caught up in the social fights around us…when in the end…if we keep our hearts on Jesus….everything will be ok.  He wins.  The devil knows the end of the story too….Jesus wins.

A Mom’s Trip

Our son’s college graduation is coming at us at warp speed.  I am convinced there is someone sitting somewhere that has the job of turning the hands of time at “light year” speed when your last child enters college.  If I ever find this person, I plan to take them out…I am MOM; I have superpowers.  With that ever increasing tick-tock towards graduation, I made a promise to myself to visit  monthly.  Whether there was a performance or not, if a weekend worked…I would be there.  Babies don’t keep, and babies in college certainly don’t keep.  We have no idea where he will be in August as graduate school begins…as the life of a classical percussionist/musician….you apply, you prescreen, you pray for the live audition and then you toss dandelions in the wind praying for one good acceptance with enough money attached that it works.  I do believe entry into medical school is probably easier..or at least less stressful.  Judged on ONE day….one performance.  And again, babies don’t keep.

So, it was a great price on airfare and off this Mom went to grab nuggets of time and create treasure boxes of memories before his next adventure begins.  I snagged a great deal on a rental car on “Name Your Own Price” on Priceline.  Who knew that this great deal would end up being a VERY great deal when I arrived in the town referred to as Nashvegas.  I know you are dying to know more of this story.  Well, here goes.  I get to BNA and go to the counter (I didn’t know that even though I used Priceline, I could still use my Emerald card.)  I noticed several folks hovering around waiting….I soon learned why.  The agent told me I could use my Emerald card and head straight to the cars.  I get there and well…no cars-refer back to folks hovering around comment.  (Seems there were several events in town.)  I was greeted and then told to go to the “Luxury” aisle and pick my car.  I ended up in a “all the bells and whistles” Ford Edge.  Not too shabby for the bargain price I bid hoping for a Nissan Altima! (This was my second very successful Priceline/Name Your Own Price in one month!) Onward to the son!

I am thankful that my sis lives in a popular southern suburb of Nashville.  Free room. It makes these trips easier on the wallet and it’s nice getting to spend time with her family too! There’s one thing about college boys that is universal.  Free food, feed them…they will come.  My college son introduced me to the wonderful hamburger that is offered at Fido’s.  It’s good stuff.  It was also nice to meet one of his friends that was working that night and the conversation over our dinner was awesome!  There may have been words used that I could have used a dictionary for, but there’s a saying in our house in those situations-“Smile and wave, just smile and wave.”

Our fabulous Mom/Son weekend included a trip to Newk’s, a high-school football game where we cheered on Grace Chapel, watching our Hogs lose to Texas Tech, a trip for some cheap Tex-Mex, brunch at “The Row”, and a quick lunch on my way out at “Frothy Monkey” by his campus.  “The Row” was a  new one for us, as we were originally planning on “The Tavern”, but hungry stomach’s noticed that “The Row” took reservations!  It was a great brunch option!  I will go back!

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Toss in some visits with my Dad and sis and her family…and a wonderful trip to Puckett’s-Columbia (The best one in my opinion.)  Super great weekend. Plus, a weekend with new shoes is always great….I think I have a problem.

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I was even able to connect with one of my Arkansas friends that was in town for their anniversary trip!

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I still cannot believe we are in that season where we have conversations about the active application process for graduate school.  Our weekend was spent in many conversations regarding his six school selection process and the methodical method he used to determine those six schools.  Hearing conversations about his passion for music, and his insatiable appetite for music knowledge.  Probably the most intense conversation of the weekend was after he had been to the David Platt convo-Radical.  There’s nothing more wonderful than hearing your child claim Christ in a very real and personal way.  To hear his concern over the area David Platt spoke on…..a very real concern.  Knowing his generation is being charged with reaching the world….the unreached….just a great conversation.

One little shout-out to the trip back to Chicagoland….we won’t mention my “wayward” luggage…..but we will shout from the rooftops how wonderful the cake is at “A Piece of Cake.”  I had never seen the little section in the ATL airport before.  Oh y’all, the strawberry cake was awesome!  If ever in the ATL, it’s worth the trek to Terminal A.

Babies don’t keep, and this baby is almost finished cooking.  Graduate school is quickly approaching and with that comes those last few strings being cut.  I’m not sure where time went, but it went far too quickly.  My Harry Potter has grown into this amazing man that I simply cannot believe God trusted me with.

Love those kiddos, time goes by quickly…..and to my Harry Potter, I love you to the moon and back and forever and always.

Rare of Rare and Oceans

Moment of truth here.  I find myself questioning God’s plan sometimes.  As a Christian, I feel guilty for doing so, but I also know that I am a human and I have to believe that the God of the Universe that knows every hair on my head…well, that He understands.  He understands that sometimes, I just don’t feel joy.

Today is an update, recap, something of this past week.  I am the “rare of rare” and just a girl questioning so much, but trusting that it’s all under control.  Before I begin the recap, I do want to just comment that I had the best week in between clinic time. I was able to spend time with my wonderful aunt and my incredibly talented sister.  If you are ever in the Lake Jackson, TX area, stop by “Fresh and Fit.”  Ask for Tracy.  Awesome shop, cool smoothie options and a great salad bar.  Shopping, food (oh, so much food) and just a wonderful time of connection where you could share, laugh, ponder and just enjoy being with folks that are “your people.”  I love Houston, Texas and the area of the Highlands, Galleria and Memorial…well….just a special area.  I was quickly reminded of Texas “humidity” when I arrived on day one.  It’s just so thick.  Nothing like it.  I wish I could say I saw things that triggered childhood memories, and for a moment I thought being on Holcomb did…but I can’t be sure that wasn’t all in my head.  I ate more Tex-Mex than allowed by law, but oh, it was so good. (El Toro, Chuy’s, Pappasito’s, Escalante’s) The scale is not happy with me today, but homemade tortillas can never be passed up!  Had a special lunch at the Houston icon, Oesies.  Wonderful. Texas, you are a special place.

MD Anderson is massive.  Surrounded by Texas Childrens and other clinics and UT Medical, it is just a large medical area.  MDA, by itself, is just massive.  (Wait, I said that already. Ok, so you get it’s massive.)  Some pieces of advice if you are making a trip.  Make a dry-run of where you want to be and where you need to park.  It will help so much on the morning of your check-in.  Garages are clearly marked and signs list the clinics/buildings most closely associated with that location.  Sky-walks are your friend as well as the maps scattered all over the complex.  Elevators are lettered and the clinics are all great to let you know which elevator is best for their location.  Lost?  Confused?  Anyone working will help you.  I must have looked VERY lost one morning…as a janitor came up to me and asked if I needed help.  I thought I looked well versed in all things MDA…it seems I looked like a deer in the headlights!  Thankful for his discernment over this girl from Chicagoland.  The first floor cafe is crowded…efficient, but crowded.  Allow time for the wait at all the stations.  Starbucks coffee is served in the Aquarium. (More on fish, later.) In the sky-walks, walk where the blue lines are.  Kim may or may not have walked on the other side and received a stern correction from one of the shuttle drivers.  Blue line..just sayin’.  Take a jacket, take books, tablets, coloring books…things to keep you busy.  All the clinics have a television, but I prefer to find me a corner to just “be.”  Electrical outlets are readily available for charging devices.  The lab is busy.  It will seem very cold, but once in your room, the techs are warm and very kind.  I’ll probably have more tidbits as this goes on, but that’s my start.

Now, for my MDA week one.  There was something very surreal about being there, driving onto campus.  This is “the” place for cancer and various benign conditions.  This is the place other facilities call for advice.  They are the “gold standard” for most of the issues they treat.  This place, MDA, is often the “Hail Mary” pass for many patients.  You see patients that are just beginning, in the middle, at the end and on the flip side-remission/cured.  Every age group, several economic demographics, several ethenticities…..everyone an equal the moment they walk in the doors.  I overheard the joy as a patient learned his surgery was approved by his insurance provider.  I saw the sorrow in a family that knew that they were likely not going to get a cure.  I saw the desperation as a wife pleaded for a clinical trial for her loved one.  I saw the joy of a patient who was there for “just a check-up”….they were deemed “cured.”  I saw families from China that had traveled to Houston for care.  Unable to speak English, they were relying on a translator for their information.  I saw friendships that had developed between caregivers and patients.  Surreal.  Here I sat.  In the midst of all of this.  Northwestern, Mayo and now MDA.  “Rare of rare.”

Dr. Fossella is all that his hype says he is.  It’s just a rare day as a patient to find a doctor of his stature and knowledge that has remained humble and has such a relational approach with this patients.  For those of you out there that live with a medical condition, you know what I mean by “my book.”  It’s the book with records, scans, etc..all at your finger tips.  With the exception of handing over discs for upload, my book was never used this trip.  That has not been the case up until this point.  I began to let down my brick wall as we talked through what the week would be and who would be brought alongside to make my team.  Various tests/scans were ordered and day one was complete.

I do have to interject this little tidbit of the week.  I do not get the need for aquariums in a clinical setting.  Water, yes…calming…but those fish swimming around eyeballing me at every turn…I’m sorry, but I wanted to take a net and go around MDA and release them to the pond.  I saw this one man walk up to one of the large displays and act as if he was playing with the fish.  I am thankful he didn’t see  my perplexed face.  It’s not a dog.  It’s part of the food chain..and way down on the list.  Fish is food. (Contrary to what Finding Nemo wants you to believe.) Period.  Ok…tangent over.

The morning of the scans, I opted to attempt a walk-in at 6AM.  My original time slot began at 11AM and ended at almost 2PM (NPO) and nothing about that sounded appealing.  I knew I had a follow-up that afternoon and felt if I could get there before scheduled appointments began, everyone’s day would run smoother.  Just like Mayo, the IV entry was event free.  I am confident that when you deal with cancer patients, there is a gift acquired for “hard” veins.  I learned my veins are smaller than normal and that is part of the issue, along with scar tissue.  Radioactive glucose administered and the hour wait began.  Two scans and then I was done.  By 8:30 AM, I was walking out of nuclear medicine and over to the thoracic clinic to let them know I was finished.  Breakfast (FYI, do not order the gravy.).  Waiting.  Lunch.  Waiting.  Finally.  I know many would be upset over the long wait, but I saw people go in that were very sick and families go in that had fear written on their face…I will wait so that they can be seen first.  They need the doctor more than I do right now.  I colored, I realized “The View” is just an awful program, and I learned that folks really do watch all those afternoon TV shows.  People can sleep anywhere and the kiddos there with family just didn’t see the “sickness” around them.

I won’t bore you with all the details of RRP, pulmonary metastasis, the research or all of that.  More than ever, I now know that there are no experts in pulmonary RRP.  There is no standard of care.  RRP is rare.  Pulmonary metastasis, even more so.  If the RRP converts to squamous cell carcinoma, it simply becomes the “Rare of Rare.”  When you hear that from MDA, it’s sobering.  When it’s rare to the folks who deal with rare every single day….it is honestly hard to accept.  We don’t know for certain that the pulmonary areas have converted or if the areas in the trachea are converted.  What we do know is that the PET showed size and metabolic change.  Conversion or not, I am left with rare.  No real “rule book” in which to follow.

So, today, I sit here and honestly wonder why.  The questions that have no answers spin through my head.  Trying not to think of the logistics and expense of using MDA, but trusting that it’s where I need to be.  If I am dealing with the “rare of rare”, I want to be where they see that more often than other facilities.

Where we stand today.  I go back late September to meet with Head and Neck Surgery and Head and Neck Oncology and to have a lung biopsy.  Fairly certain we will explore the area in my trachea as well.  Just that time, that season, where you simply say, “It is what it is.”

MDA is a machine, a well oiled machine.  There for one purpose.  To cure people of cancer and treat certain benign conditions and do the research that will bring an end to cancer as we know it.  If you know that going in, you are fine.  They are focused.  From the desk to the highest level provider….one purpose.  End cancer.  It does not have the same vibe as Mayo, but it’s not Mayo.  It’s MDA.  Two different missions.  I loved the Mayo vibe, but over the past few weeks, it became more and more evident that Mayo, for me, did not present the best option.  Maybe it will down the road, but for now…..I am where the “rare” goes.

I mentioned earlier that I have been questioning God’s plan in all of this.  He moved me to Chicagoland, but I’m having to travel to Houston.  I don’t get it.  I don’t get how all of this fits together in my life.  Then, I hear, “Kim, you aren’t meant to understand. That’s My job.”

Yesterday, at church, we closed with the song that so wonderfully says what I am working towards….where I want to be in all of this.  For the first time in weeks, I let the tear fall.  It’s all so much bigger than I can handle on my own….and for this person who seeks control, letting it go is easier said than done.  So, I leave you with these words…these words that speak to me so loudly.

You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand

And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You’ve never failed and You won’t start now

So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

By: Hillsong United, “Oceans”

Texas Update

Rather than tie up the Facebook feed of those who aren’t awaiting an update, the blog seemed more user friendly.

MD Anderson is a lot of hurry up and wait and downtime. I cannot begin to imagine the caseload of different departments, so I am not upset about the gaps from one appointment or test to the next. I looked around yesterday and realized there are many there that need to be seen much more quickly than little Kim. Thankfully, I was told what to expect from someone about a month ago.

Dr. Fossella is all that his hype says he is. What is even more remarkable is how he has maintained the ability to relate to the patient. He has already added another department to the team and due to who he wanted, that does mean another trip. The rest of this week involves testing and a follow-up on Friday afternoon.

Some of you have asked which I preferred. Mayo or MD Anderson. The approach to the patient is radically different, yet the knowledge base specific to cancer and benign tumor growths….I just don’t think it gets any better than Texas. I loved the Mayo way. I loved the Mayo vibe. I love the deep level of knowledge of my health issue at MD Anderson. I can see if a patient came here without years of medical background…it could be overwhelming. Forty-three years of surgery kinda loses that overwhelming sensation in any medical situation. So, I don’t prefer one over the other. Two different models.

So, a short visit tomorrow and a very long day on Friday. The goal this week is for the areas of concern not to read any more active than they were on the last PET scan. When that question is answered, the plan will become more clear.

Peace out from Texas!!! Land that I Love.