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”

2 thoughts on “Rare of Rare and Oceans

  1. I wish I could give the hug in person but will do so here for now. You are in my thoughts and prayers and though I keep wondering ‘why?’ as well I also know that 3-word question will drive a couple of control freaks like us mad! 🙂 Your beautiful writing will reach others . . . maybe that is all the answer we get for the moment.

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  2. Thinking of you, sweet friend. I had no idea you were going through all of this. I love reading your blog and know God has you in the palm of his hand. Trusting everything’s gonna be alright and praying for your peace through it all. Here’s a big ((((((((HUG))))))))))! ❤️

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