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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Avelumab….Cycle One….Infusion Three……

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“So, let go my soul and trust in him…the waves and wind still know his name…It is well, with my soul.”  “Whatever my lot, it has taught me to say, it is well with my soul.”

I’m going to let what’s above hang there for a bit and come back to it towards the end of today’s entry.  I finished Cycle One of the Avelumab trial for RRP this past Friday.  My third infusion is now in my past.  I’ll chronicle this trip and then take this entry much further than the other two…

Wednesday:  The third infusion trip is a no OR week.  I’ll be honest, my body was so tired from two trips to the OR in three weeks, I don’t know if I could have honestly gotten on the plane back to DC had there been another OR for this week.  It would have been a pure “God Thing” if I had…and I suppose that’s exactly how it’s meant to be….when my strength fails…His strength carries me.  And while I sit here and type my doubts of being able to do it again, I know without doubt, the strength would have been there at just the right time.  I left the chilly air of Chicago to go to the DC area of sunshine and seventy degrees.  Coat was left at home…not even a light jacket was packed.  Checked in at the NIH, rejoiced over my private room (3 for 3), and reconnected with staff that has quickly become folks I am going to miss greatly when I am done with my season in this trial.  Nurses that greet you with a hug….desk staff that knows your name as you walk into the wing from the doors.

Thursday: My incredible phlebotomist (AKA, nicest vampire ever.) arrived at 5:30 AM….bed was laid flat…because my BP is still not behaving and in small attempts to prevent another “incident” like week one, there are now precautions taken to help my BP do its thing a tad better.  I’ve stopped looking at the vial count or size….research labs are what they are…no sense looking at growing apprehensive of a repeat of week one.  My Vampire and I have had this little unspoken agreement…he comes in, I take out my arm for that day, he does his thing, turns out the light and closes the door.  Remember that….because if you know me..you know that I don’t like to speak when first awoken from my slumber….

Clinic came quickly on Thursday, and I was sitting on the familiar chair next to the scope of horrors….ok…maybe that’s a slight exaggeration….but I’m sorry….even with the nostril numb…I really don’t want to be part of the black lighted scope going down my nostril to enter the airway and view my larynx and such….and then quickly placed down my cannula for a quick peak at the lower portion of my trachea and bronchial openings.  Your body naturally wants to fight this procedure, but I cannot say this enough…Dr. Allen is indeed the “Scope Whisperer.”  He should travel-giving a masterclass in his technique.  Now…imagine my joy when I only had to do the trach scope portion….oh lung metastasis, you have given me a reprieve over a scope!  My lung lesions are my trial criteria instead of my tracheal or larynx lesions…so no scope on this third visit.  Insert very happy dance. I was then on pass for the rest of the afternoon, and after my routine pregnancy test, off I went to enjoy an incredibly beautiful day down in Bethesda.

My doctor highly recommend dinner at a new Greek restaurant.  I must say…I’ve had places such as Taziki’s, but never really had what one would call traditional Greek food.  I’m a huge fan now…I dislike yogurt…as in I don’t understand the mile long display in the grocery store.  The texture and taste just aren’t my thing.  Well, scratch that…I’ve learned there is a way that Greek yogurt and I do get along.  Crispy Brussels sprouts mixed with pomegranate seeds and mint and tossed in a thick Greek yogurt.  So yummy that I’m going to try to replicate it at home this week.  I was in the area for lunch and dinner, so toss in a very French style slice of quiche for lunch…and I think it’s clear to all, I enjoy food.  (PS…the quiche from the French bakery was unlike any I have ever had.  It was tall and light..not dense.)  The sun was setting quickly, so back to campus I went to enjoy watching my kiddo play in concert at Eastman and settle in to rest for infusion day.

Friday:  My favorite Vampire came in again….at 5:30 AM.  And you are not going to believe this…but he wanted to chat….about the negotiation process of buying a new home….umm..we have an unspoken agreement..we don’t talk at 5:30 AM…..I smiled, nodded even….but to say I was relieved when the door shut…well….again…I don’t speak first thing in the morning.  Up, showered, back into comfy clothes for the infusion and then downstairs for “real coffee.”  Then over to procedure wing for ultrasound on my two forearms to mark for IV placement. (PS-this is a super cool thing!) Back to Oncology wing for EMLA cream on those two areas and wait thirty minutes.  Back to procedure wing for insertion of infusion IV.  Back to Oncology to wait for Avelumab to come up and pre-infusion meds.  A 50mg Benadryl push and I are not on speaking terms.  Thankfully, for whatever the reason, I thought to mention my reaction to the drug to the team….and learned that my reaction was not typical and was an opposite reaction.  So, this push was diluted and pushed at a slower rate…so much better.  I did not tense up as badly, my teeth did not chatter…still didn’t sleep a wink…and did get a decent headache as it wore off later in the day…but so much better than the prior two infusions.  An hour after the pre-meds, the bag was attached and the infusion monitor programmed….90 minutes.  It’s surreal to me how much easier this infusion was mentally….the nurse and I literally chatted most of the 90 minutes away.  We were working on solving all of the worlds problems and talking about being a full-time Mom with an autistic child….and how she could work somewhere much closer to her home, but chooses the commute to the NIH because of the mission…how the playing field is level….on the 3NW floor at the NIH…every patient is an equal…cancer doesn’t care about income, status, any of that…and I think that’s what makes it special…every patient on 3NW is fighting something that doesn’t discriminate….it touches every single facet of this world…from the poorest to the richest…patients like me looking for a new cure…patients like maybe the man across the hall possibly there for a “hail mary.”  Every single person there…from staff to patient…part of research..something bigger than themselves.

Two hours post infusion, I was able to go outside and enjoy the incredible weather in the courtyard at my building.  The sun, it’s warmth, medicine for this soul.  Nausea began to creep in, so I headed back inside…insistent on “pushing through” and not taking medication.  My “cure” of flavor blasted Goldfish and a touch of caffeine…seemed to be taking the edge of.  I can do this.  6:20 my room phone rings…ok…who is calling me on the room phone?  Oh…dining services.  “Mrs. McClellan, do you plan to order a meal tonight?”  Umm…..well…..I suppose since you stop taking orders at 6:30 PM, I should do that.  I ordered my standard chicken, baked potato, salad, and a rice krispy treat.  (Do not laugh…that’s one of the few “treats” that still tastes good..and it’s a solid “go to.”)  Recall that nausea I was treating with my “cure”…..anyways….one bite of the chicken….and it was back.  My cure had failed me…enter Princess.

If you recall, I mentioned Princess in a prior entry.  She was, once again, my Friday night nurse.  Princess started prodding me to take the Zofran around 7:30 PM….I, being the self-proclaimed nausea superwoman…was oh no…I can push through it…it just a wave.  10PM….I think I’ll take that Zofran after all.  Now to backtrack a bit on my evening with Princess.

Princess and I had a good amount of time together Friday evening.  The floor was slower due to several Friday discharges, so I found that nurses would linger….and Princess did as well.  We talked about so much….Jesus….religion…differences between here and the democracy of her native African country that her family still visits..her  mother actually lives there part of the year.  (Let’s just say, I would probably have a key to my cell if I lived in her country due to my frequent visits for speaking out against elected officials…) Anyways…then we were talking about my journey the past two years as my faith has been on this winding journey…and we talked about our Muslim friends….and she said something that I will never forget.  She came here at fifteen.  She’s probably late 30’s now…”I never knew religions hated one another until I came to America.  In Africa, Muslims and Christians lived with a respect for one another.  They attended our events, we would attend theirs.”  That first sentence….it’s been on autoplay in my mind and heart since Friday.  And then her telling me she has told her Muslims US friends to consider not wearing their hijab in public…she fears for their safety.  My heart just ached.  All the while, she is oozing joy….a joy that is infectious….a joy that can only be found when one has something bigger than themselves to look towards.  She talked about the way she travels the world with her children…wanting them to see the world in the bigger picture that it is…they live simply and frugally to travel to other cultures.  It was one of those conversations you cherish…but man..that first sentence.  The night came to a close with my Zofran complete….

Saturday:  Discharge day.  When your doctor shows up on a Saturday in basketball shorts bearing the gift of a cup of Starbucks…I mean seriously….how can it not be a great day.  We chatted about what comes next….about different things taking place in the RRP field of treatment….and then…I asked a question that gave me an answer that, I’ll be honest….I’m struggling with just as much as the possible outcome of my next visit the week of March 6th.  This is where I am going to end the day to day chronicle and go a tad off the rails from the prior two posts….

(PS-about half way home, 22K feet in the air, nausea came swiftly and I just prayed that I would make it off the plane in Chicago without being sick.  It lasted all day and was the hardest wave I have experienced so far.  All I can think, is that I did not have on my “patch” that I wear to the OR and maybe that’s why it was so pronounced. Thankfully, Sunday was not that way and today has been easy as well.)

Off the rails a bit…

I knew, when I chose this trial, the bar was set high.  The bar for “success” and the bar for going on to cycle two.  Think of the bar as the same bar the Chicago Cubs strived for…and it took years..a bar so high that you wonder if it’s even possible.  For the Cubs, they finally met that bar and went over it much higher than any dream could have predicted.  That’s the bar set on this trial.  I knew my body was such that it’s not thirty…it is the age that it is…and I knew that I had to also keep in mind possible life altering damage to my organs and endocrine system that can occur with the use of this class of drugs, especially in longer cycles, rare, but it does occur.  I knew that I wanted my participation in a trial to be about more than just me…I wanted the research related to the trial as well as other trials my blood has been used for to count towards that elusive bar of “cure.” I knew going in, I could possibly be looking at three doses and then excluded….and I was ok with that…or at least I thought I was….

I’m done with my third dose.  When I return for my visit March 6th week….it’s my first trial review since inclusion.  My first CT since that initial CT weeks ago.  A CT that will be read without my trial doctors having access to the scan….they will simply get a report on whether I met the criteria for staying in….or my time has come to an end.  My bar…is 30% reduction in size of the largest lesion in my left lung.  30% of 2.4cm.  My world record level bar…is set.  Just a few mm will decide this outcome….and here I am, staring at this bar…that came so quickly….and my peace and assurance about all of it….suddenly, it doesn’t seem “well.”  I know every participant so far has responded….and I also know some have just barely, literally mm, been removed from further treatment.  Wednesday, after Tuesday CT, I will walk into clinic not knowing if I’m headed to OR on Thursday for a standard debulking procedure or if I will be enjoying DC on Thursday and having an infusion on Friday.  I don’t think they will even have to say the words….the team is so invested in the patients on this trial…it’s so personal to them…I think I will see it on their face. And again…it still doesn’t feel “well.”  There’s an unknown to all of this as well….the class of drugs in the cancer field is so young.  Literally, so many just barely out of phase III trials….there’s a huge unknown as to the how it works longterm….once treatment ends.  My disease is considered “pre-cancerous” for trial purposes…and while the lab says one thing…the reality is once you add in the variables of an individuals immune system, the host environment for the lesions….the lab can only predict so much. So, if I don’t reach that bar….will the drug still keep working to reset how my T-Cells work against my disease?  Will even a small response possibly continue on to more of a larger response?  It’s an unknown…..immunotherapy drugs for cancer are filling the pipeline of every major pharma that has a division for these classifications of drugs.  Jimmy Carter is walking around today with no evidence of disease…from his treatment using Keytruda.  The commercials seem like it’s the miracle everyone has been searching for…but reality is…the full response rate is around 30% even for cancer patients….but 30% response if you are stage 3/4 is an enormous success rate….so I take that and I wonder…if that same full response rate applies to my disease…3 in 10.  I so long to be one that hits the trial criteria to continue on….and I so want to be ok with hearing I am not continuing on….but truth is..today…I am not “well with my soul.”

Something else took place this trip….and it’s that thing that has broken my heart….a hope that I had clung to for so long…for now…not possible.  In my head, this trial would go like this:  trial, full course of trial inclusion….no evidence of disease…reconstruction of larynx…de-cannulation of trach.  I go back to life pre-trach…one I remember…a life pre-RRP, I have no memory of…so…but right now I have the best voice I have had in probably 20+ years….so now, I do have the memory of a almost real voice.  One that happens with little effort from me…one that doesn’t create oxygen deprivation headaches…one that allows me to feel almost normal in conversation even with strangers…one that I have used…a lot…often to just say something to a stranger I never would have said prior to now…a “you are so pretty” or “I love that purse” or even saying something to the child sitting on its mothers lap on the airplane….in some odd way, I feel part of this world again in a way I had forgotten what it felt like.  To be able to complete the simple act of using FaceTime and truly being able to hold a conversation with my baby girl, my baby boy, and those precious babies I so adore…..how will I be “well” if/when it goes away?  How will I accept hearing I’m likely never going to live life without a trach?  That’s the news that broke my heart….even if it works…even if I could reconstruct my larynx….the stenosis is so extensive…my life would likely be almost impossible without a trach.  I have clung to that hope for so long…that one day…it would be gone.  I just assumed….I never really asked the hard questions…maybe even I knew I didn’t want the answers…but this weekend…I asked.  And, I’m being honest here…it is not “well with my soul.”

To be even more honest…right now…looking into my return visit…I’m not sure not meeting that bar of 30% is “well.”..or will be “well” anytime soon.  My heart is broken….and my hope that this drug has indeed had such a strong response is so large…that if I hear a no…it won’t be ok then…I’m giving myself permission that if it occurs…it’s ok to grieve the loss…to not instantly go to that fall break phrase of “God knows best,” because…I will likely question it a thousand times to God if I don’t meet that bar….and given my journey with Jesus and everything the past two years…I understand now…that’s ok…..I can question it…I can be angry …and He understands and He will wait on me until I am “well.”  Then I also think…if I meet this first bar….will I selfishly start already asking for the next goal…or will I be “well” just knowing I made it to cycle two?

The song “It Is Well” in so many ways is my life song….some people have a verse that they use…but for me…it’s always been this hymn that has been changed into incredible worship music.  Bethel Music has my favorite version and it’s the version on every device I own…the song I play in those moments..those days…those weeks..where it isn’t “well.”  I cling to that promise…that hope that I honestly…can’t even understand in these current days where my heart hurts…it aches..for something I had clung to for so long…it’s a loss….something I am going to give myself permission to grieve over…just as I will either be celebrating or grieving an answer in just a few days…and I know now…that it’s allowed…it’s even welcomed….it doesn’t reflect a lack of faith on my part or even an unaccepting heart towards my life here in this temporary home….

So…today, much of this is simply not well with my soul…..but I’ll continue to trust that it will be….and that over the next few days as I look at 30% in a way I never have before…I will trust…even if the answer I don’t want comes….one day…soon…it too, will be well with my soul.

Vacation Review-Sandestin 2014

I love the ocean.  I love the beach.  I simply love everything about it-the sand, the water, the smell of the salt air, the way the waves roll up the back of your leg…all of it-well, minus the whole I am part of the food chain once I enter the water part.)  If I could figure out a way to pop a tent and call it home for the rest of my life, I would.  (With indoor plumbing, of course.)  I love the New England coast as much as I do the beautiful beaches of the Florida Panhandle.  From what I hear, I think I would say the same thing about the west coast.

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Growing up in Mississippi, going to the Florida panhandle is just what folks did.  The idea of possibly going to another part of the country to another beach area, just didn’t come up in conversation.  Some may call it the “Redneck Riviera”, but I simply see it as the closest thing we have to the Caribbean here in the United States.  Over my lifetime, I have visited the coast of Mississippi, Texas, Alabama and even the Atlantic side of Florida, but my heart belongs to that stretch called 30A.  Reaching from just outside Panama City and going west to the edges of Destin, it’s paradise.  “The Truman Show” was actually filmed in Seaside, which is on 30A.  Sandestin has been our “go to” choice now since our oldest was in early high school.  Nestled on Miramar Beach, just east of Destin, this resort has grown into almost a small town with the addition of shopping/restaurants, and everything you need to make a vacation comfortable.  We have been to the coast in May, June, July and August and this year we added October to that list….and it did not disappoint.

A glimpse into Sandestin

A glimpse into Sandestin

A Village Peek

A Village Peek

One of the biggest questions you have to answer before you book a trip to Sandestin is “Beach side or Bay side?”  We have done both.  We have stayed steps away from the beautiful turquoise water and we have stayed steps away from the bay and all the fun the Baytowne Village brings just steps away.

We love the ease of going to the “Village” when we stay on the bay-side in the village and we also love the ease of grabbing out beach gear and making the three minute walk to the beach.  One is not better than the other.  This year, the condo we enjoyed on the beach-side was undergoing some October construction, so we opted to trek across Highway 98 and stay in the Village on the bay-side.  It was a great choice for the October trip!  We were able to get to the beach in less than five minutes and in the evening were able to be in the Village after a short two minute walk.  The pool for our condo this year is my favorite pool of the entire resort, so that was an added perk!  (It’s a zero entry pool that at its deepest point is only four feet deep.  It’s a beautiful pool for kiddos, parents and adults who just want to enjoy the tranquility of the water without the cannonballs in the background.)  We were directly on the bay as well, so we had the beautiful Choctawhatchee Bay glistening between the tall pine trees that line the bay.

On the Bay

Beautiful

Beautiful Sunset

Evenings could be spent walking along the piers by the bay or biking the resort or walking in the soft, white sand of the most beautiful beaches in America.  Tennis and golf your thing?  More than you can possibly ask for….grass courts, clay courts…..several golf courses….all located in a gated, secure resort.  Dining, playing, kid/teen activities…all right there. This is not where college kids go for spring break…..winner, winner, chicken dinner!   We are huge Sandestin fans….now…we will be the first to tell you that if you go during high season-expect crowds.  That’s just the nature of the coast of Florida in the summer.  It’s never been intolerable, but I have to admit…October has been our all-time favorite visit.

The water did not have a speck of sea grass in it.  Probably the clearest I have ever seen the water.  Just beautiful.  Temps were perfect.  Warm enough to enjoy the water, the beach, the pools, but cool enough not to worry about heat danger.  (Take sunscreen!)

Beautiful Clear Water

Beautiful Clear Water

We did have one “rain day”, but even that was a fun day.  Two treks over to Seaside were both met with gully-washers and we finally got the message we were not meant to spend the day at Seaside.  Back to the Sandestin/Destin area for a little outlet shopping at Silver Sands (hello North Face, Kate Spade and Vera Bradley outlets!) and that was followed by deciding if it was a movie evening or dinner out.  (We opted for food, of course!)

It’s funny how you can spend an entire day sitting on a beach and look down and realize it’s six hours later than when you first sat down.  Beach life was how we spent our Saturday, Sunday, Tuesday, Wednesday and most of Thursday.  Toss in some time spent at the Destin Harborwalk to view the weigh-ins for the Destin Fishing Rodeo and food excursions…and that’s pretty much our week.  One of the biggest highlights of our visits to the coast each time is that I get to see my beautiful cousin, Jan and her adorable family.  Our second trip to Cantina Laredo with another snapshot of us all together.  Granny Page would love that we are able to see one another…even if it’s just once a year or so. Jan’s son, James, has to be one of the most gregarious kids I have ever met! Imagine a twenty year old bottled up in the body of a first grader!

It was so wonderful having our Josh come in for a few days (Fall Break) and this Momma heart just overflows with how much I enjoy time with this kid and enjoy feeding him!  One of the great things about staying in a condo is that you get a full kitchen and that kitchen made my baby boy his favorite sausage gravy and biscuits!  Speaking of our condo, we did have one HUGE issue during our stay……a tree frog.  I am so afraid of frogs it’s almost silly.  I had picked out my spot for coffee on day one and that spot was my friend…until…the frog spotting.  That frog took up residence.  Finally, in desperation to have my coffee spot back, I had my hero, Lee, bag the frog and set it free in the lawn area downstairs.  (I may have looked daily for the frog after that….afraid he would return.)

The FROG!

The FROG!

As with every trip to Florida, the day the week ends always brings me such sadness.  I’m confident I am a walking billboard on that day for “pity party 101” and how not to act when it’s time to go home.  Not only do I just enjoy the coastal world and all it offers, but my health does too!  I keep wondering if I can get a RX for beach relocation and have it covered by my insurance.  Pity party aside, I am so grateful for the time we did have on the coast and am already counting down the days until our next visit.  Sometimes, the best vacations are the ones where you go and simply sit and listen and watch….the vacations that restore your joy and force you to stop for a few days.  That’s Florida for this coffee girl.

Yes, this happened.

Yes, this happened.

Now to get you up to speed on some of our favorites of the week!

Tradition is that we eat at Pompano Joes for our first meal of the week.  It’s directly on the beach and you can sit and enjoy the waves and good food at the same time!  Some of our favorites there are the crab claws, fish tacos and fried shrimp and pineapple slaw.  (For shrimp folks out there, gulf shrimp simply put every other shrimp in the world to shame!  So sweet and wonderful!)

For those night we want to cook in the condo, a trip to Sexton’s is in order.  This is our favorite seafood store!  Such fresh seafood and so clean and you won’t walk in and be knocked down by the smell of fish. (Ya’ll know what I mean!)  We were so fortunate to be able to take Royal Reds home two different nights!  Three minutes with some Old Bay and just watch how quickly they disappear!  If fish is your thing, expect some of the best grouper and flounder around.  Several other options are there too, but I am a shrimp girl and just gravitate directly to those!  The folks there are so nice and will answer all your questions!  It’s a little bit of a drive from Sandestin as it’s close to the Destin Harbor, but it’s worth the drive!  Open until dark!

Dewey Destin is our next go to place to eat.  The fried oysters, shrimp and fish (grouper) are the best we have found.  Hushpuppies are tasty too, as is the slaw!  This is not “fine dining” and they don’t pretend to be.  It’s just well cooked seafood that is fresh off the boats.  The key lime pie-oh my.  Don’t share….you won’t want to!  Harbor side seating is available.

Louisiana Lagniappe  is the place to go for sure.  It’s pricey, but oh my goodness.  Make this your “special” meal of the week.  Yes, you will think you are lost when you pull into a residential area on the bay, but you are not!  They don’t take reservations and there will be a wait during high season.

Another Broken Egg in Sandestin at the Village.  We try to eat breakfast there once or twice during our stay. Most mornings we eat in the condo before we trek to the beach.  (Huge money saver there and bring a cooler and pack your lunch!)  Some personal favorites are the Grits with gouda, bacon, tomato and green onions, the French Toast with bananas foster topping, any of the scrambles and just a word of warning-portions are HUGE!  The steel cut oatmeal is tasty too and comes with real Tupelo Honey.

Sweet Bread French Toast with Bananas Foster Topping

Sweet Bread French Toast with Bananas Foster Topping

Those are our “go to” places near Sandestin to eat, but as long as you stay away from the super touristy spots, good food is not hard to find.  (If you like seafood!)  Chains are chains and we typically stay away from any chain that isn’t a local chain.  (I can get that food anywhere!)

When planning the trip to Sandestin you also have to decide if you want to rent via Sandestin (pricey) or an outside management company or owner.  We have found VRBO to be a great rental resource and My Vacation Haven has wonderful properties and quiet often has a coupon code.

Just no words for the beauty of the ocean

Just no words for the beauty of the ocean

So, pack your bags, grab the sunscreen, and leave your cares in the driveway and head on down to the beautiful Florida gulf-coast.

My Joy.....

My Joy…..

Dreaming of Florida……

Footprints....

Footprints….

The Red Cup, The Crown and Miss America

 miss-america-2015-crowning

Miss America is my super bowl.  I look forward to it each year and believe the Miss America Organization is a great avenue for young women to pursue excellence and obtain scholarships.  Yes, I know the negatives….our family knows them first hand; BUT, I am here to tell you that any negative is crushed by the positives that this organization can bring to a young woman.  We are a former MAO family.  Our daughter competed at the state level and was top ten and a prelim winner. 

abc crown

So, here’s my take on Miss America 2015…short version.

Being from Arkansas, I was rooting for our girl simply for the fact she was one of ours.  What I didn’t expect was to fall in love with her as the night went on.  She would have been an incredible Miss America, but I am confident she will be coming home just as excited to keep her job as Miss Arkansas.  (Miss America is a grueling job.  Judges know this and that’s what they are looking for-the girl who can do the job.)  I believe any of the top five last night could have done the job.

What I loved about the top five!  With the exception of Florida, none of the girls were “super hyped.”  New York was a bit, but when your state organization has won two in a row……you get to be hyped!  I didn’t sense “pageant patty” in any of the girls.  I love that!  Miss America and our state winners….they have to be real, genuine, VERY well spoken, quick on their feet, able to adapt to changing situations….they are basically the face of the organization.  The voice of the organization.  One sour winner or pageant patty traveling across the state/nation…there goes the brand, the sponsors, the reputation.

Talent.  Ok, here’s the deal to my non-pageant followers:  talent matters, but talent does not make your winner.  A consistent girl will win every single time.  (Look at last night’s top five-all were consistent!) Being excellent in just one area will never win the crown.  Being average in just one area won’t keep you from a crown.  (Unless that area is interview…and it will keep you from the crown.) The question to ask today is, “Was I entertained?”  That answer is YES!  That’s the talent portion of Miss America!

Red Cup-At first, I was going “really??”  Then…..look at her face as she performs it. Pure JOY!  She wasn’t a horrible vocalist.  Decent.  Good enough when you factored in her other areas. OSQ showed she likely had a good interview.  (PS-those TV OSQ’s are NOT scored-just the ones in prelims.)  Kids across America will relate to her and her talent…and that folks….that’s what Miss America is all about.  It’s not about black-tie affairs, or corporate meetings about sponsorship-it’s about getting to America’s kids and letting them know, especially girls, you can DREAM AND DREAM BIG if you are willing to do the work!  A HUGE portion is spent with CMN-she’s gotta be kid friendly!

I thought Ashton had it won after Florida was called, but I can totally see how Miss New York won too.  Let’s never forget that wonderful final ballot.  Sometimes, it can toss a monkeys wrench into things…but any one of those top five girls would have been an outstanding Miss America…and that’s what the judges are for at Miss America.  Give us the five who can do the job…and the rest is history.  Ashton has won over $40,000 in scholarships just at the Miss level……I think she is doing ok!

So, for every little girl out there who dreams of being Miss America….keep on dreaming!  Work hard!  Be your best self!  That’s the secret-be who you are at your best!

Our baby girl having her moment at Miss Arkansas.

Our baby girl having her moment at Miss Arkansas.

To those who are having a wonderful time bashing the girl(s), system, etc…..from experience I tell you that it’s probably the hardest thing you can possibly imagine to win a local, win state and just get to that Miss America stage.  It’s a pageant. What you don’t see is behind the doors….the work that goes into competing and being a title holder.

I love the crown.  I love Miss America.  Just a nice reminder that in our ever changing world…we have a constant in our pop culture.

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