Masks

This has been a season of sitting….and as I take two stops forward, three steps back on most days, the word “mask” keeps coming to my mind….

Webster’s Dictionary has this as a definition of “mask”: something that serves to conceal or disguise.

My time in the trial taught me lessons that I still don’t know how to put into words, but more importantly, my complete and utter disappointment in my outcome…well…it revealed my “mask.”  In some ways, the “mask” was already showing several cracks and thin spots, but it wasn’t until I was faced with something I could not process, that I was forced to take it off just to breathe.

Today’s ramblings, are about my mask…what it was hiding (some of which I haven’t even realized yet) and about the masks we all wear…for different reasons….bear with me, as I am confident we will go to Lucy’s house and back a few times….taking various detours.  Those “squirrel” moments.

I’ve been trying to remember when the mask went on…..did it go on for my disease, did it go on for things I experienced growing up, did it go on as a young Christian, did it go on as an older Christian…..were/are there multiple masks that I’ve used over the years?  Why does one feel it necessary to wear a mask?  Is authenticity something we all “say” we want one another to do, but in reality we don’t?  Are masks to protect ourselves, those around us, or to hide those human insecurities and imperfections that we worry will cause those around us to leave or think differently of us?  Maybe, they are all of the above.

The earliest I can remember possibly using a mask, had to be as a teenager.  I was awkward, acutely aware of what I perceived to be a status of “less than,” craving to belong, wanting to be normal, like my sister(s).  Like most teens, I learned to pretend…a lot.  That age where I would guess, most “first masks” are used. I became who I thought others wanted me to be…in the process losing who i was and missing out on the journey I was meant to be on….I used that mask to take a “forced road.” Like most actors, over time, the longer you play the part, the harder it is to remove the mask.  So, at some point, that mask was stuck on-stupid decisions allowed to be made by that mask I let control me.

I see my next mask mirrored in so many social media posts on Facebook.  The mask of the “perfect mom.”  Can we just get a national amendment passed to simply say, “Moms, your job is tough.  Some days, it will stink worse than a dead skunk.  Some days, you will want to run, as fast as a sprinter. to get away from all of it.  There will be nights you watch the clock tick minutes away…as you await bedtime.  There will be days  you wonder how much therapy your child will need as an adult due to the damage, you are certain, you are inflicting on them as you count your failures for the day.  But, Mom, take off the mask…be real.  There are no perfect birthday parties, no perfect methods, no perfect Sunday mornings as you shout for anyone to just be dressed..just one of you…and there are no trophies at the end of the day for the “Miss Mom Who Faked It The Best Today.”  The only trophy you will ever get is that kiss on the cheek…or that “I Love You” when you least expect it from the child you were certain was demon possessed just an hour ago.”

Can I get an “Amen” on that amendment.  I scroll down my feed and I see the masks.  I can even look back at my own during that season.  I was scared.  I was uncertain.  I was winging it most days.  I failed more times than I can count….and I’m certain God shook His head at me most days in that, “Hmm….maybe Kim wasn’t the best idea for this experiment.”  The mask hid all of that from the outside world….as far as anyone wanted to know….I was a pro.  (My kiddos will tell you loudly…I was not.)  One big hot mess.  Somehow, well, I know how…simply by God’s grace did I not drop one, oh wait…I did that…oops…sorry Meg….ok…somehow, by God’s grace that I did not forget to pick one up after school…oops, I did that too…sorry Josh…naps.  See…my mask to appear all together was hiding nothing more than a mom dancing on hot coals just trying to get to the other side most days.  Getting kiddos from birth to high school graduation….it’s hard.  I wish someone had pulled me aside during that season and ripped my mask off….but I think we were probably all wearing a mask of some sort….had social media been a thing back then..would Moms today have a record to look back on that was real, or would they see the same masks they try to wear today?  That mask that made you believe that if your kiddo wasn’t the smartest, or the nicest, or in a certain class…you were a failure-oh my goodness if they happen to bite a kiddo at school…..how could you be such a terrible parent? Satan loves to dance on Mom’s…..loves to make that mask feel like a weight on our shoulders.  I was a willing participant…I let him hold it on….and I type today wondering how many around me were doing the same thing.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.  2 Corinthians 12:9-10

Then came the mask of “College Mom.”  Who knew that such a thing even existed?  Let me say this, and hear me loudly…..letting your kiddos go off to college, even if just down the road, is the hardest thing for a Mom to do that relates to the raising of her kiddo.  You pray that seeds are planted…but at the end of the day, it’s mask on time…because you must appear to have it together in this season.  With announcement, you tell the world that your kiddo is off to college…social media is a thing now.  There is no “empty nester” support group….and there’s no time to even appear less than stoic.  Your mask must present the impression that you have prepared your child for this moment in time….they will be successful…they will make perfect choices…and you will wear their success like a well earned medal.  I’m here to tell you..this mask lies.  Kiddos aren’t perfect.  Sometimes, plans made by them and the family don’t go as expected.  This mask tells you that you failed.  You somehow did something wrong along the way that gave way to outcome A or B or C.  This is the mask that I have wanted to burn a thousand times over.  What good are any of the struggles as a Mom through this season, if we hide them from the other Moms who could so desperately use simply that sign of, “me too.”  The job of Mom doesn’t end the day they leave for college, and our mask shouldn’t be one that presents this perfect facade to the outside world.  Our pain in this season of the empty bedroom…it should be shared. When something goes not as planned, we shouldn’t have these masks on that prevent others Mom’s from realizing, “me too.”  Yet…we do..we wear those masks…and I wore mine proudly.  Like every mask before it, it was the lies Satan had me believing about myself…and about where I was in life.

As I journey, seeing that all along, there were two masks carried that never went away, never got put away.  The mask of my illness and what I showed to the world….and the mask of my faith and what that was to me-not the one I knew needed to be presented. As I open this jar, one common theme is in every single mask-the lies that Satan told me….the lies that I let myself believe as truth.  I wanted to get that out there before I talked about the two heaviest masks of all….

The mask I wore from age five….still wear in many ways today…the mask of an illness..the mask of a voice I didn’t ask for, surgeries that I have grown so weary from…the mask of regret and anger towards that illness…the mask of grief that this illness brings on so many days….the mask that wants to have me sit and doubt that I am prepared for this….that somehow, in a way that I will likely never understand…this illness will be used.  The mask that told me it wasn’t ok to be angry or question God about all of it.  That doing so, somehow made me not have faith. (Goodness, Christ called out to God on the cross!!!) That to just sit and let God know I was tired of all of it, was somehow a reflection on my Christianity.  Oh, this mask is heavy….and I like to think I’ve taken it off, but it’s still there….I’ve just decided to take some of its power away.  The mask of my illness has robbed me of plans that I had made for myself, but it hasn’t robbed me of who I am.  I’m taking that power away from my mask.  In some ways, this mask has become like Jim Carrey’s character in “The Mask.”   With the mask of my illness on, I can pretend the life behind it doesn’t exist.  I can be that person who seems to be handing it with grace.  The crushing defeat of this past month has made that pretending too great of a weight to carry…the mask of my illness has to become lighter if I am to move forward and not get stuck in my sitting. So, while I know the mask is still on, I am taking control of the power it has, but recognizing that times will come where I have to stop and sit in it. Those days, where in order to move forward, I will wear the mask…but now with a knowledge of what I’ve let it control…and my freedom in deciding if it gets that power on any given day, any given moment.

And that leads me to the mask that I am working to take off that reveals who I am as a Christian…what I believe….what I have found to be man-made….the mask that weighs so heavily somedays…that I wonder if I’ll ever have it fully removed.  I have exposed some of this mask prior to today via a few other blog posts….a mask that was/is so powerful, it shaped much of what I thought was true for so long…..truths I am working through at this season….breaking apart what is true, what isn’t true, what’s Biblical, what’s not.  Realizing how that mask, that mask that had me believing certain actions where required in order to be “a good Christian”…that I used that in decisions that caused hurt….to myself…to others around me.  And that, my friend, is authenticity.  I allowed my faith, the mask of it, to be so legalistic when it suited me…that it caused pain, hurt.  God ripped me from the pit of where this mask had taken me.  Today, I can say that mask is cracked…pieces of it missing….but the journey of trying to remove this mask has been hard.  It’s easier to just sit where you are, than to be plucked from the comfort of your little mask and forced to take a jackhammer to that mask to find what’s on the other side.

I don’t write this today for pity or any of those human desires….I write to share my masks…and where I am in the journey of the masks that I know about….so that maybe someone out there will maybe just be, “Me Too.”

There will be more on all of this….but just exposing this much has made my head feel lighter….bringing those masks out of the darkness into the light…..

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Avelumab, Evaluation Week….

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This past week has been incredibly difficult.  Difficult in a way that I don’t even know how to process with authenticity.  To be honest, I am mad at God.  I still trust Him…but I’m mad.  Forty-five years of RRP…I’m tired…tired of this broken body that I neither asked for or caused.  I entered the trial with such hope.  The idea that we may have a pathway to a cure….or even just a nonsurgical option….my mind raced ahead imagining a life post-RRP.  I didn’t allow myself to really consider being a non-responder.  I did all the things I was always told to do…I prayed, I trusted…I may have even softly begged…..and at the end of the day….I was the first non-responder.  Now, I sit trying to understand the why of it all….and I realize I’m just mad.  Does that make me less of a Christian?  Does that mean I don’t really trust God….or does it simply mean that I am human living in this world that can often seem so cruel….even to those who have the strongest of faith?

I’ve learned these past few days how cruel some of the “right things” Christians say can be….I recall learning some of these after my Mom died…but they seemed easier to hear then…maybe because I knew for certain she was now without pain….she was free from the cancer that had entered into her life ten years prior to her going “home.”  She was in peace…and I could wrap my head around that and be ok with all of the grieving process….but this….now…I honestly am struggling to understand the why of it all.

So, here’s my recap of my first Avelumab evaluation..three infusions down..two OR procedures down….and it all comes down to a CT scan.

I flew into DC on Monday so that I could avoid that 5:45 AM flight on Tuesday….Tuesday began with labs and my being able to follow up on Mr. Wesley’s house story….such a kind man.  His family came here from India…and his heart is so tender, yet so funny.  Seems they put in the contract on the house of his dreams…and then his wife became upset with him and cancelled the contract…then went to India for two weeks to visit family.  Ok….you just have to imagine this story…it is and was hilarious.  He described every detail of the house to me on Tuesday morning…he was in love with this house, but he knew…it was no longer his house to own.  I’ll come back to Mr. Wesley in a bit.  Soon, it was time to head to the CT department.  When my name was called and I entered the CT room, I was caught off guard by the weight of the test and everything this scan would stand for….a machine that is incapable of empathy…untruth…what it would tell the radiologist reading my results for the trial would be 100% without human error.  The results would be whatever they were and no one could argue against the results. Thankfully, I had made dinner plans that allowed me to escape the over-thinking nature I hold….a couple of hours where I didn’t ponder the “what if, the results…”

My fellow RRP friend and I met in person for the first time for dinner on Tuesday evening.  Irish food in Chinatown.  Such a neat place for dinner and you honestly felt as if you had stepped into an Irish pub in Ireland.  Fellow RRP folks…well..we are one big family.  The safe space of not having to explain our voice, our life…knowing the person across the table from you gets it…people you have never met in person, but you would do anything for them…because, well, our community is small, but our  hearts are large.  Back to the red line I went…and whether I wanted it to or not…Wednesday was coming.

Lee flew in to DC on Wednesday morning.  The timing worked out so that he was entering the NIH just shortly before the clinic appointment where I would be given results…where I would learn if I went on to cycle 2, or if my time in the trial was coming to an end.  Doctors have terrible poker faces…as do the trial nurses and trial PA’s…no one even had to say a word.  It was written across their face.  The defeat and disappointment we all felt…so real. The idea that I would not respond at all…didn’t even enter my mind before clinic.  I was unprepared for that result…and maybe in an odd way that was good…would being a partial responder and removed from trial be harder to take in?  We chatted about what comes next (exit CT, labs, clinic on 3/28)…and what is being learned from my blood and tissue samples…in that moment I didn’t get emotional.  I was stoic…almost having this overwhelming desire to encourage the team….my emotions would wait…clinic was over…back to the floor I went and with a quick check-out for the afternoon, Lee and I were on pass.  DC in four hours would be the goal…Lee’s first trip into DC.

DC was a very welcome escape from all of it.  Just the outdoor air and walking from the Capital to the Lincoln Memorial and points in-between.  Walking through the WW2 Memorial, the Korean Memorial, the Vietnam Memorial….seeing quotes from those before my time here on earth…words of wisdom we need today in this sea of chaos swirling around us.  Albert Einstein and I had a little chat about RRP and I’ve enlisted him to help find a cure for all of the community…he seemed receptive to the idea.  Soon, my body said it was tired and back to the red line we went…and with a stop at Bethesda…dinner at Passion Fish.  We grabbed the floor staff/nurses a box of cupcakes from Georgetown Cupcakes and back to the NIH we went.  Surgery time would come soon on Thursday…cupcakes delivered, thank you notes delivered to staff/nurses and to my Mr. Wesley.

Due to my CT results, I would receive no more infusions and my Thursday would be a trip to the OR for a normal RRP debulking procedure.  Still stoic…still trying to be Ms. Positive Spin…I knew it was all a lie….but mask on…I pushed through.  Surgery came and went….the plus side of surgery with no infusion to follow was that I could take the steroid push in the OR to help me come out of anesthesia quicker.  Instead of sleeping until 6 in the evening, I was awake and functioning by 2:30pm.  Oh, and no research labs since I was on the door out….now back to Mr. Wesley…at some point in the afternoon, I decided I wanted to walk down for better food.  I did not know on the basement level was better food than the room service or second floor.  When I returned to my room, there was a note from Mr. Wesley.  He left me a note to look at his house…the house he was not going to be getting…something so simple that meant so much to him, he wanted to share.  That note is going in my hatbox.  It’s a treasure.

Friday was fairly boring with the exception of my love of Zofran….fewer team members came in on Friday….and as nurses learned of my response, we all worked through that.  I think that’s what makes the NIH so special…you are part of something bigger than yourself whether as a trial participant or NIH employee.  Your win is their win…your loss is their loss.  Lee and I felt prompted to shower the unit with a bit more love, so we sent a bouquet of flowers.  Nurses and the staff on floors are truly the unsung heroes of medicine.  They deal with us when we are often at our worst…and often without a single thank-you.  When I would walk by the flowers, later in the day, I would smile knowing those flowers represented the level of care I was part of.

Saturday was everyone on airplanes back to Chicagoland.  Josh coming in for break on a flight, me on a flight and Lee landing at Midway…a quick trip to Raising Cane’s and it was indoors under a blanket…where Zofran and I continued our relationship…still ongoing today….

So, that’s the recap of the week…now back to the realness and my thoughts now.

I learned something over the weekend from Lee…it seems in pre-op…I broke down.  I broke down in front of the entire team. I have no memory of this…but I am told I was talking about the journey and how I ended up where I had so prayed not to end up.  I’ve tried to see the perspective of this…that my coming home was not the same as someone being removed from trial that had stage IV cancer…where their coming home was “going home to die.”  I was coming home to the same life I had before entering the trial.  Yes, the drug has forever altered my immune system and we don’t know if I could possibly have a delayed response….there’s just so much unknown in the world of cancer immunotherapy. I can’t let my head go there…to that possibility…because the heartache a second time…I’m just not that strong.  I’m really not strong at all…I just have learned over the course of a lifetime how to wear the mask for those around me…..but if I am being honest…I envy most everyone around me..the ease at which they talk…the ease at which they can live life…life without counting down days until the next OR procedure…life always wondering if this scan is the one that shows conversion to cancer…life without having to wonder what changes are coming to healthcare in the US….life in a world where so often, those with visible signs of being “less than perfect” are in many ways sitting on the back of the bus.

As I said in the blog before this….nothing about this is well with my soul…and I don’t know when it will be.  I’m human and want to know why I have this disease and why I didn’t respond…when others have.  I don’t want to hear how it’s all part of God’s plan…the God I love….He can most certainly use everything to His good…but I don’t believe in a God that brings sickness to his beloved.  Sickness is from this fallen, broken world…but, I’m mad today….when I stop to think of all of it…the tears just roll down my cheek…so, I am working minute by minute to push it all back down….

Do I regret the trial?  No.  I would honestly do it all over again without hesitation.  It was the best shot I have had in my lifetime….and the things being learned in this trial….they could lead towards the cure I so crave…even though I know now that a cure doesn’t mean life without a trach.  For those responding, I am so happy for them.  That’s where I can go back to family….family that cheers one another on…but also sits in the grief of the disease when necessary…which is what I am doing now…something I don’t recall every doing before…letting myself sit in the grief of my disease and it’s impact on my life….maybe allowing myself this process will help me not grieve this disease again….where I decide to live a life without the mask.

One day, hopefully soon, I can be like Snoopy in the pic below….just not today….one day.

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Surgery Ain’t for Sissies and Christmas Miracles

The title says it all. “Surgery ain’t for sissies.”  Whether going in for a small procedure or a mid-level procedure or one that requires an extended stay in the hospital, surgery knocks the wind out of the sails.  Period.

I have waited to post this update, mostly due to feeling as if someone had taken a four-wheel mud ride inside my throat and airway and wondering if typing any words at all while on Oxycodone was a wise decision.  (Surely, it might have been funny to see what I would have written.)  Tack on a little respiratory infection coming for a visit, and today, well, today is the first day I think I should type any words to be saved for prosperity.  .

Mayo had  me come in a day early for some pre-op testing and consultations.  One of those consultations was with the anesthesia team.  Normally, anesthesia is that person you see the morning of your procedure and briefly as they tell you “night-night” while injecting the “good drugs” into the IV line.  For this anxious girl, this meeting was the one that I was able to ask questions and they were able to make the notes necessary to make everything the day of surgery proceed seemlessly.  To know they were just as concerned about my anesthesia side-effects as I was….well, that’s huge.  Permission to drink clear liquids up to two hours before the procedure, even better.  It’s the little things that make the biggest difference for any patient.  They were very attentive to those details and it has been my experience at Mayo for the most part.  The patient comes first. A script for Ativan to take the night before to calm any nerves and it was time to have that “last meal” and prepare mentally for the next morning.  (Chester’s is still my favorite place to eat in Rochester…yummy!)

5:30 AM check-in.  The process is seamless at Mayo and it was literally minutes until I was back into the room that I would be taken back to after surgery.  Various things going on around me to prepare the nurses, the room and myself for the day.  Getting shorts to wear to surgery-awesomesauce.  Being told that I could go back to the OR with my glasses on and with my earbuds/iPhone for music-can we get an Amen!  Then when it was time to go back to the surgery department-being able to walk like a normal, healthy person.  I can do this!  Pre-op was even more efficient.  I was sitting up in the holding bed-another little touch that can make a huge difference, while nurses went over the various questions and anesthesia started the IV.  During IV prep, another nurse was making impressions of my teeth for a custom guard-yep, I needed that about thirty years ago-teeth and a lifetime of surgery do not go together.  Then the Head/Neck doctor made a stop by and I was quickly taken to the OR suite.  Less than ten minutes later, my awareness of anything going on was gone.  I awoke in recovery and was quickly released back to the floor where I would spend the rest of the day.  Due to how well I had done, I was being released to the hotel the same day!

I do not say this lightly, this was the best surgery experience that I can remember.  From Thursday-release, I cannot think of one thing I would want done differently.  The biggest praise for me is that I did not get sick…not one single time.  I can’t even think of a time I felt queasy.  This is not my normal pattern, so I am so grateful to the team for each process they put in place to limit this side-effect.

Friday evening-Sunday evening was tough.  I slept most of the time and dealt with some details from surgery that I will just leave off the blog.  Monday came and it was time for the post-op visit and hopefully that phrase, “You are free to go.”  The pain was still fairly even from the prior two days and eating was still a challenge as well as drinking, but it was getting a little better each day.  The doctor went over everything that took place in the OR, along with awesome pictures.  Biopsy results from the larynx and tracheal area would be ready by Tuesday at the latest.  Having a PET scan with a SUV value of 14 in the trachea, I knew it could go either way.  The doctor knew it could go either way as well.  He noted that he did not get everything in the trachea due to the large volume and would have me return in January to complete that area as well as see what my body was doing with the scar tissue.  The lung biopsy did not take place due to the bronchial scope being unable to reach any of the sites.  That will be a procedure on its own in January as well.  Just like that, we were on our way back to Wheaton.

I guess we were about two hours into our drive back when the doctor called.  With excitement in his voice, I got the all benign, squamous cell papilloma!  It would be several days later, that I could let that soak in and realize I had a positive PET scan, changes in the area and my biopsies came back benign.  God took care of this for me.  I know that He did.  I’m not in the clear 100% yet, but that phone call was a huge step forward.  There are still some questions about possibly missing the carcinoma at the base in the trachea, but we will cross that bridge in January.

Once home, I was given the gift of blessings by women I have met in our short time at WBC and in small group.  These women have shown me such love and compassion.  A little back track here.  The Bible study date before surgery, these women covered me in prayer like I had never experienced before.  I will never forget their hands, their prayers, their tears as we prayed for peace, healing, protection.  I know with every fiber in me that those prayers were answered.  I am here today looking at systemic therapies that are far less toxic than those I would be facing if these samples had come back carcinoma.  More than that, I walked down that surgery hall with confidence and peace.  My family covered me in prayer, friends from East to West, everyone that had any knowledge took the time to call out to God on my behalf.  For that alone, I am the richest person in the world.

Recovery took a solid three weeks.  I am amazed that I actually used to have surgery as a kid and would eat a hamburger that same day and be back at school usually within 36-48 hours.  Surgery ain’t for sissies, and it’s certainly not for us “At Your Age” gals!

And now, for the Christmas Miracle.

Surgery was performed to create access for instruments for biopsies and debulking.  I was never, not even once, given any hope or indication that I would gain anything back more than possibly a stronger whisper for my voice.  The goal was to simply determine if I had converted to cancer and create access for the instruments that would be used for that purpose.  The only hope was that in this, I would possibly gain some relief from oxygen-deprivation headaches.  Now, imagine my surprise when about four days ago, something louder than a whisper started to come out.  It’s not easy to do, as I have truly forgotten how to speak, but when I concentrate, there’s a voice.  Those who have known me for the majority of my life, well, they are saying it’s the voice I had in high school.  I don’t remember.  My son has no memory of me with any type of voice, and my daughter only has a scant memory of one.  I don’t know how long it will last, or if it will even come back after the next procedure…but for now, when I really try, there’s a voice. I have woken up each of the past few mornings and the first thing I do, well, is I try to speak.  This, based upon all that I have been told by more than one Head/Neck doc, really is my Christmas Miracle.  My vocal cords are so damaged, so stenosed, that a voice shouldn’t be possible.  I am trying so hard not to think about what happens when it leaves….because I cannot explain the elation I have felt being able to order my own meal in a restaurant.  Not having to depend on someone else to speak for me in that setting.  Simply being able to talk on the phone for brief periods of time without getting a headache or the person on the other side hoping they heard me correctly.

I can only give the credit to God today for everything. He lead me to Mayo. He carried me into that surgery suite.  He heard the prayers of dozens on my behalf.  So, for my Christmas miracle, I am grateful.  I think if I can have it long enough for the babies to hear their Mimi, for my Josh to be able to remember his Mom with a voice, and for me to remember not to take something so normal for granted…..then I have had the voice long enough.  I am going to work so incredibly hard to not beg God for more days with a voice, but ask Him to keep me focused and while I do have a voice that I use it to honor what He has done….not anything else.

Many of those who know this story have asked to hear my voice.  I still don’t know if I am going to make a public post with it.  The last thing I want to do is draw attention to me, when folks, anything greater than a whisper is God. Period.  It’s that simple.

So, this is my Christmas Miracle.  Recovery still has a couple areas to work on, but I am well on my way.

“He performs wonders that cannot be fathomed, miracles that cannot be counted” (Job 5:9)IMG_1753

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”