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 1, Week 2

“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.”
― Nelson Mandela

I’d like to change the word “man” to “woman.”  Done.

Fear….anxiety…..two words that have followed me into the OR for most of my life.  It was never about a lack of faith, and I honestly find it incredibly cruel when people say to others, “If you had more faith, you would have less fear/anxiety.”  Can we agree to toss that line into the compost pile?  Back to fear/anxiety….I suppose as I grew older and learned more about what can happen in the OR, I developed a fear of the process.  Each needle would create a tension that worked against my body relaxing to lessen the pain.  Then the major medical mistake that nearly cost me my life….and an irrational fear took over any resemblance of rational thought when it came to any type of medical procedure….my first thought when coming out of anesthesia had become, “I am alive.”  Mix all of this into a life where over 250 surgical procedures have taken place….and it’s not too far fetched to say there could be some PTSD in all of this….a reluctance to do what is needed in order to live life more fully…because of the fear and anxiety of past issues and knowledge of what can and does happen under general.  None of which is in existence because of a lack of faith…if there was a lack of faith issue, I think long ago I would have grown so angry at God that I just walked away entirely.  So, I start with this on this blog entry just to gain a little insight into why what seems so mundane…is truly a celebration for me.  My entering this trial, was a giant leap of faith….a giant test of what my courage level is…and even greater test of what I was willing to work through when the fear knocked so loudly.

Cycle One, Week Two

Monday:  I arrived into DCA after an uneventful flight.  If you read about the prior flight, you know this was a very welcome change.  It’s still unnerving to enter approach at DCA and see water in front, behind and on the side of the runway.  Much like that runway at Boston.  The wheels touched down and you are thrust forward as the brakes are applied to prevent water issues.  I’m always silently relieved when the person next to me isn’t a chatter.  I am simply on the plane to get to point B from point A…..I’m not that passenger who even tries to utter more than that polite nod and smile as the person sits down in their seat.  I follow that rule of, “if earplugs are in, or a book/iPad out…there’s your sign to not speak.”  Soon, I was on my way to the NIH campus to get admitted and being the week.

Monday brought a fun adventure for dinner into Bethesda.  I was able to finally meet a Chicagoland person that I had met via Facebook through an Arkansas friend…crazy that it took being in the DC area to finally meet.  Such a great time of learning about one another…and oh the crab cakes….Alabama sourced blue crab, hardly any filler….oh how I love those crab cakes!  I am beyond grateful for the gift of independence given to me while I was growing up.  It may not have seemed like a gift at the time, but now…I treasure it.  Not being afraid to travel alone, venture into parts unknown…tackle public transit…and walk confidently as I explore…thankful.

 

Tuesday:  This week of the cycle was more downtime due to no scans or other testing outside of copious amounts of blood drawn each AM…at 5:30 AM.  Seriously..I’m calling it. Vampires…the nicest vampire in the world…but still….work done before the sun rises…and it’s blood…there’s a possible link.  (This is alternative facts.)  So, once AM labs were done, it as time to get ready for clinic that afternoon.  Back to the fear/anxiety paragraph…over the years, I have developed a true fear of being scoped in the clinic.  There have been times I literally had tears running down my cheek, simply from being so fearful of this procedure.  I know God knows that fear…and He also knew that I needed to do this trial.  The first scope by Dr. Allen in December, I used music to try to distract my brain from the process.  It was the least uncomfortable scope I have ever had.  And then we are at this past week….and I used no music…nothing…I’ve jokingly referred to him as the “scope whisperer” and I am amazed at how the fear is just gone.  Once my video was complete, I was done for the day, so I put on my “Where’s Waldo” hat and ventured back out.  PS-passes off campus are a glorious thing.  I grabbed a late lunch/early dinner at an authentic Spanish eatery.  There were  menu items I would not touch in a million years, but was thankful for a great waiter who guided me towards safe choices….I’m a fan of those safe Spanish choices.  Tapa style eating is awesome!  Then I grabbed the Metro back to campus and caught “This Is Us” on TV, and called it a day.

 

Wednesday:  Due to my pitiful, small veins, I was not cleared for Aphresis…so once my AM labs were drawn and I had seen everyone on the teams dealing in my care…and the visit from the social worker….I had a free day.  There was talk of running fluids to prop up my BP, but that would be done that night if we did it at all…..so with confidence..down to the Metro I went…I was headed into DC to the Newseum.  (If you know me, you know I am a total news nerd…so when I heard there was an entire museum dedicated to the First Amendment and historical pieces from all mediums in journalism…well…my Disney World.)  Then….I was stumped.  The side of the Metro that would take me where I needed to go, was down….and the marquee with how to use the one track going both directions was down…I was a lost goose.  I had no idea what to do….so…..because I’m such a go with the flow person (you can laugh now), I came back up from the depths of the Metro and decided I would just walk into Bethesda Row area.  Being able to walk 1.4 miles in February and not be a popsicle…glorious.  I was able to pass by things on the NIH campus I had missed, always being on a shuttle or down in the Metro…able to see small businesses up close, venture into an incredibly nice Teeter….I know my being able to do such a jaunt (even if it seems small) is a gift….there are times when that would seem an impossible feat, so I am grateful for those days where normal seems almost within reach.  NIH rooms are equipped with the most awkward showers.  I can barely shower safely, so washing my hair is just a big production.  I decided to take in a “blow dry bar.”  This was my second time to use one of these, and I must say…better than a pedicure.  Once my hair was “southern high”, I grabbed a late lunch….and returned back to campus catching an NIH shuttle at one of the local hotels.  NIH makes getting around so easy.

Once back on campus, it was time to do those little rituals that I think help with OR days.  If for no other reason, those rituals give me some sense of control.  Soon, it was Ativan time…if you don’t take advantage of the beauty of Ativan before OR procedures…you should. And in the blink of an eye….the two hard days were here.

 

Thursday:  I have noticed, that OR days bring a different pace to the nurses caring for you.  I’m one of those that had rather wait to closer to time to change into that lovely gown, but it creates stress for those charged with getting me ready.  Patch-on.  Second Ativan-check.  Time to roll to pre-op.  OR days are just odd to me now.  When I was younger, the bounce back from all of it was so quick.  Now, it’s simply not the case.  I remember the IV being started….and that’s about it.  My next memory would come about 8 hours later…when I was awake long enough to eat some of a baked potato and drink some fluids…then back to my own “La La Land.”  My OR IV failed during the OR, so I woke up with one hand swollen and throbbing and an IV in the hand that had no IV just a few hours earlier.  One cannot express the confusion this created in a very drugged mind.  I would write more about Thursday…but I honestly don’t remember anything else.  Only because it’s written down, I can say there were no new growths…and maybe some change…too soon to really know if it’s change we are seeing.

The big news of the OR and the week comes at the end of the blog…

 

Friday:  My second OR IV was failing, so it was a relief to get that removed before it caused more issues.  Before I could even brush my teeth,  it was time to head to the procedure wing to have my infusion IV started.  It’s so important that the infusion IV be in a strong, healthy vein, they use ultrasound guided methods to start that IV.  I’m an IV baby.  I want the injection of local….that wasn’t written into the trial protocols, so I have to settle for the cream.  It was placed to low on both arms….so, in what can only be described as a huge moment of either delusion or bravery, I let her do the IV with full sensation….granted it was only a 22 and it was in my forearm…but I did it.  I don’t want to do that all the time, but it’s huge for me to be able to say I did it.  I stepped over another fear mountain.  Back to my room, to pull myself together for the day, eat some breakfast and prepare to get pre-infusion drugs.  (PS…I cannot speak highly enough of the care at the NIH on the oncology floor…the nurses are incredible…and they truly love what they are doing.)

My infusion head nurse was probably my age, maybe a little bit older.  The time had arrived for the Tylenol and massive dose of Benadryl….I seriously have found the Benadryl to be the worst part of infusion day.  It just makes you feel horrible and I am one of those that it doesn’t make sleepy…it makes me tense.  Not a fan, but it’s necessary to help prevent infusion site issues.  11AM.  Infusion started.  This cycle, I didn’t even glance over to the to the bag.  Not one time.  It’s infusion rate was increased twice per protocol, and soon it was over and the line was cleared…and it was done.  I ordered a small lunch and then spent the better part of the day trying to recoup from Thursday OR day.  Anesthesia just isn’t a friend to folks my age, and two visits to the OR in three weeks..well…not a fan.  The teams came by to follow up on Friday and then my Princess came on shift.  Princess….I still just can’t begin to express the joy she oozes. She stands at the computer in my room and she is singing while she charts and scans.  Seriously….how can that not make you smile?  Princess walks in, and her first words to me this visit, “Ms. Kim, you look tired.  Let’s take your night meds early.”  “Umm….can we try to wait to normal time?” “Now, Ms. Kim, I’ve been doing oncology floor for 12 years…you need to trust me on this.”  I did…and she was right.  Sometimes, there is no shame and no defeat found in fighting what your body wants to do. She helped me to see that asking for Zofran wasn’t failure…it was me realizing that what I am doing is not easy, it has consequences.  Princess is so funny….she let’s me sleep once she gets that 10PM vital…sorta.  She cracks the door occasionally throughout the night…just barely peaking in….I will miss her…and honestly the entire NIH staff when this trial is over or I am removed.

Saturday came.

 

Saturday:  Even though you know it’s “go home” day…until you know that the final check  has been marked on the discharge orders and final IV removed..nothing is certain.  With my bag packed, some resemblance to looking human having taken place by simply putting on regular clothes and shoes..it was time to head back to DCA for a flight to Chicago.  In this visit, I had been cared for by women from such diverse backgrounds.  The unit already knows me….and I was able to meet some of the other patients in the unit on other trials.  People, where this is their “Hail Mary.”  That’s strength…at least it is to me.  To see people walk the hallways that I am sure had rather be in bed…but they put one foot in front of the other and they walk.  I learned I seriously want a purple, satin robe…what strength that robe spoke as that patient walked by.  Nausea is real this time.  I don’t know why I expected to escape side effects….but I did.  Today is better…and I am hopeful that trend continues.  I know the fatigue is coming….should be here Thursday….and it’s manageable and I am prepared this time…I won’t be caught so off guard.  As Princess told me, my immune system is at war right now.  Sweets sound and taste horrible now.  Things that aren’t sweet, taste sweet.  I never thought a day would come where I would walk past cake or a dessert menu without even a glance.  That day is here.  If this works….flip-flopped taste buds…a small price to pay.

 

Closing:  I head back for an infusion/clinic only visit in nine days.  No OR this next trip.  My body is so thankful for this break from the OR.  I’ll go back to the OR on the visit after next, but I plan to enjoy anesthesia free existence for a few days.

Now back to fear and anxiety.  A few people knew what I was doing on this visit….I did this entire week solo.  On my own.  Just me…and me.  I had such a confidence in my care, and I honestly don’t want Lee using all of his vacation time sitting in a clinic or hospital….I went rogue…solo.  I cleared it with the team before I made the final decision.  Today, knowing that I can do the OR, clinic, infusions…all of it…with confidence…solo…..I can’t begin to express the wave of relief over my entire mind.  I needed to know that I could handle my health solo.  I do so in clinic settings already, but this visit..I conquered that last frontier…could I do it if there was an OR visit…could I do it on infusion day…could I make it to my gate at the airport….and I did.  There were incredible friends who prayed and checked on me all week…Lee who has learned through the years when to be there and when to just sit.  Now, Lee is coming on March 6th week.  That’s a big week in the trial and one that we both need to be part of.  Today, this past week has me thinking of my Mom and my Dad….and my Granny Louise…and my Granny Page-the people that gave me this incredible gift of independence.  I wish I had known it was a gift at the time it was happening….it’s only as a much older adult that I can look back and see how certain events and lives modeled…influenced me.  There’s a power in knowing you can do your life solo….and a joy in knowing that for whatever the reason, God has said, I know you can…but you don’t have to. A spouse that understands that unique wiring I possess and allows me that freedom to soar independently when I feel I need to-I get to make that choice as different things come and go in life.

The countdown is back on….to Week Three, Cycle One.

Oh….in other news..while in Bethesda…my son was notified he was awarded a Fellowship for the summer at AMF and my daughter turned 30 and headed out for a Waco adventure.  Thankful for kiddos that know how to soar..who take leaps of faith much more often that I could have ever dreamed for them.  They teach me….and that’s just cool.

I didn’t load any pictures into this blog post.  I am guessing a picture of my very bruised left hand isn’t necessary…I loaded some of them on FB and that’s enough.

PS, I did find that going downstairs to get “real coffee” in a robe and pajamas is totally ok….now if I could just get the same acceptance of that at the grocery store.

 

The Avelumab Journey…Week One

I’m going to blog/journal this season….mostly for my memory bank…so I can look back and remember…and celebrate the successes as they come..and mourn the failures as they occur.

Monday:

It was a very eventful flight from ORD to DCA.  With travel advisories along the northeast coast due to strong winds, the DC area was not included….and if you look at a map, the proximity to “travel advisory” area was….well….let’s just say the last forty minutes was a roller coaster and grown men were clutching their arm rest.  I do not have a fear of flying, but I will be perfectly fine if I never have another flight such as that one.

After a shuttle from DCA to the NIH/NCI….it was time to get started on what has been a two year journey.  (see prior blogs for more on the journey)

Let me begin by saying that the NIH is remarkable.  Walking in and knowing every single patient there is in a clinical trial…and if you know the vastness of the campus, you know how inspiring it is to see an atrium full of people…all there to either be a patient, support a patient, act as a researcher, a care giver, a member of our military in medical service…to see the goodness of our tax dollars at work.  To look at the mission statement of the facility and be in awe….to know everyone there has one purpose…medical science.  Tomorrow’s cures, todays novel treatments, and eradication of diseases of the past.  Doctors, nurses, fellows, patients, caregivers, shuttle drivers, administration, hospitality…from diverse backgrounds…from around the world…with one goal:

img_4947It’s still inspiring each time I read this statement.   To know so many across this world do not have access to such care and research and feeling so unworthy that I do.  Realizing for all the issues our  healthcare system may have, people travel from around the globe because of the  level of healthcare in this country.  Let us never forget the scientific research and the resources required to have that standing in the world in regards to healthcare.

After visiting admissions, I was taken to the unit that would be my home for the next six days.  As I exited the elevator with my admissions counselor, and we turned to the right…there it was.  Oncology.  One word…on the plaque indicating our location…the moment things began to feel real….I was really doing this.  I was here.  Soon, I was greeted by those who would be caring for me during my stay-in my private room (insert happy dance).  Nurses, research teams, doctors, fellows, social workers….just when I was certain I had met everyone, another group would come in.  This is where the NIH/NCI gets way cool.  Yes, I was there for a specific trial…but…there were other trials ongoing that my blood/tissue would be of help to.  Trials regarding the history of viral infections, trials working to map the genome of the disease, trials involving manipulation of T-Cells to create a desired response…some crazy cool research….of course I wanted to be part of that.  To know that my participation could possibly lead to answers for so many….(this decision would also cause me some unpleasant issues, but nothing worth having comes without hardship-right?) A whirlwind of activity and then it was time to use the glorious “pass” to get off campus and enjoy dinner…

I’ve been part of the RRPF for years…people have become like family…people I have never actually met in person.  One of the greatest gifts in my travel lately, is that I have had the opportunity to meet people I have spoken with for years.  This trip, was no exception.  The Woo’s have been an integral part of the RRPF since its inception.  Their daughter, Jennifer, was honestly a rock star to our community.  A Georgetown Medical graduate, she was also a RRP patient…and also had pulmonary involvement that had converted.  She exuded joy and passion and she is greatly missed by so many across this planet we call home.  Being able to sit down with her sister and her parents…and to be able to talk about RRP and finding out things about a family that has worked so tirelessly not only for their own child, but for people across the globe…it was an honor to sit with them…a debt I can never repay for the hours those original members have put in…for the goal of a cure.  Monday…my cup runneth over.

Tuesday:

Tuesday began at 5:30 AM.  My door slowly opened to my room, revealing a glimmer of light from the hallway…”Blood, I’m here for blood.”  I hear the cart rolling over to my bed and there he was…seriously, the kindest appearing man. He would be “the vampire” for my entire stay.  That’s my phrase, as there was seriously a lot of blood taken during my stay.  The wake-up call of blood draws signaled the “green light” for everyone else to begin their day with me.  There was the EKG, the CT scan, the vein assessment for aphresis (which I did not pass), clinic visit where I was able to spend time with my best friend, “The Scope”(Although, I do believe Dr. Allen may in fact be the “scope whisperer”)..and then the formality of signing final consent forms.  Everyone, from point A to point B was so kind and qualified in their role.  I do not give out medical compliments lightly, as I have a large memory bank to pull from when the words “exceptional care” are used…and Tuesday was “exceptional care.” I was given a pass to leave campus for dinner if I so desired, but the time change and my day just said, “let’s keep this party on campus tonight.”  So, I took out my dining menu (yes, an actual menu) and ordered dinner and spent some time working on “Armor of God” and of course, social media.  Soon it was time for 10PM vitals and meds, and my first full day was done.

 

Wednesday:

Wednesday began just as Tuesday did….the sound of a rolling cart approaching my bed.  He gathered the tubes…readied my arm, prepared the butterfly catheter….wait..what….my barely awake eyes noticed there were eight empty vials on my bed…inches long.  Ok..no problem….then…about tube four…a cold sweat, dizziness, tingling in my face…”I am super woozy”…..those words….and suddenly a nurse appeared, ice bag was placed behind my neck…and I felt miserable. BP was taken….64/31.  Oops.  Bed manipulated to bring my head lower than my legs.  After about an hour, it had risen enough to allow the nurse to leave the room.  I was exhausted.  And my day had not even started.  Soon, against my body saying “rest, Kim, I want rest,” it was time to head over to Anesthesia Assessment.  Again, I cannot explain the quality of care with every department that I received.  Since my aphresis was canceled due to my veins not being able to support the pressure that would be required, after my anesthesia consult, I was able to return to my room and rest.  Teams came in and out, but I took advantage of an unexpected free morning to just “sit.”  Soon, it was time for Lee to arrive and the two of us enjoy my final pass for the week.

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My, I’m pushing fluids face…while waiting on Lee to arrive.  

Lee came in and after he got settled, we left for the Bethesda Row area.  (Ok…if you know me at all, you know why I picked that area….cupcakes…) We had the kindest NIH shuttle driver.  He was this man who had a presence that would fill a room, but such a heart for what he was doing for others.  We learned he was Mormon and that he loved getting to know the patients as they returned back to the NIH.  Such a servants heart.  Soon, it was time to head back to campus to beat the clock on meds…..normally, the night before an OR visit, I am filled with enormous anxiety.  I wasn’t looking forward to the OR on Thursday, but I wasn’t anxious about it either.  I had that level of confidence in my team and in the fact God had opened this door and had it all covered.  My job was to just “show up.”  With an Ativan for good measure, it was time for sleep.

Thursday:

I was the second case of the morning.  Lee came in around 7AM, well after the “vampire” visit and a couple of nursing visits…..soon it was my time to go back to pre-op holding.  Lee was able to come with me.  He was able to stand by my side until the moment I was taken back to the OR.  IV was started by my anesthesiologist, everything verified for the millionth time, my cocktail that prevents me from getting sick verified as well….and then…right in front of me…a huddle.  Every one on my team….doctors and my OR nurses and my anesthesiologist, came together to go over the plan one  more time as a group.  That’s the last thing I remember…and even it’s somewhat vague.  Soon, I was back in the room, with no pain, no complications, no sickness…just the strong desire to sleep.  I vaguely recall Dr. Allen coming and telling me he got 12 samples…or maybe it was 14….the math is a tad fuzzy there.  The good news is that so much testing can take place due to sample count….which not only could benefit me, but countless others down the road.

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My vocal chords post-op.  The little bumps you see at the top are papilloma.  

Here’s a funny on Thursday….I barely recall having Lee order me noodles for dinner.  It seems, based upon the note I wrote listing my food options, I also asked for toast and jello….literally, zero recollection of this….the note was his proof. I don’t recall getting on social media Thursday evening….thinking maybe I should double check and make sure I haven’t caused some type of International crisis….or said something to place me on a watch list somewhere….hey…stranger things have happened.

Thursday came to a close.  Friday was coming….Friday.  And just like that, the enormity of my decision poured over me.

Friday:

I want to say that I opened my eyes on Friday morning free of anxiety.  From the blood draw, to the time I was sent down to have my IV placed via ultrasound (yes…my veins are that high maintenance)….the entire morning was just surreal.  I could see the seriousness of the decision on Lee’s face…and I felt it so heavily on my heart.  There wasn’t a moment of second guessing….just that moment of gut check… I have signed consent for a drug to be introduced into my body that will alter my immune response.  A drug created for Stage 3 and 4 cancers….but becoming more and more accepted as a possible first line defense, especially in those immunotherapy drugs already on market.  A potential game change in cancer…and if this trial is successful, a game changer in the treatment of RRP and pulmonary RRP.

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The Infusion IV is ready.

After IV placement, I went back to my room.  It was merely a waiting game now.  Waiting for pre-infusion drugs to come up and the Avelumab to be delivered.  They said when I had the Tylenol and Benadryl administered…it was almost time.  It was almost time.  50 mg of Benadryl does not play nice…let’s just put that out there.  The process was started.  The bag was hung, the tubing fed through infusion pump….and attached to my IV port.  Two nurses double checking every single step.

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I watched every drop….every move of the nurses.  

I’m not a snuggler…I honestly can’t tolerate the sensation of someone breathing close to me….it freaks me out.  In this moment, I asked Lee to get beside me in the bed.  Not out of fear. but out of that strong desire to feel safe in what was entirely unknown-Lee has been a steady safety net during countless trips to the OR…today would not be an exception.  Would I have instant reactions….and I watched…every single drop…each increase in timing of dosage….sleep from the Benadryl escaped me….she did not arrive.  Two years….two years of doctors appointments, scans, differing opinions on what course to take….and here I was….at the destination of this journey.  I don’t think I will ever forget that moment the nurse looked at me and said, “we’ve started.”

And then….a little over 90 minutes later…it was completed.  My BP doesn’t care for the drug, but not in a way that would disqualify me from the trial. I slept.  Tears were shed by Lee and I both..but sleep did come….finally.  The exhaustion of the moment overcame any desire to try to stay awake the next couple of hours.  Dr. Hindrichs, the head oncologist on my team, as well as the PA and research nurse and social worker all stopped by…I can’t recall a single word that they said to me or I said to them.  Friday evening came…..and no concerning side effects had occurred so far…

Then…night came…and I met Princess.  Princess was my nurse for Friday might.  Princess was a bucket of bubbles bottled up in a person.  She came here from Africa, completed her education and obtained her MSN.  She had been on the oncology floor for over 12 years.  Tonight. God gave her to me.  I was her only patient…We laughed about things I can’t even recall.  She shared her concerns over events of the days last week…and then…still said she would always choose hope and joy.  That’s what she wanted her children to remember.  Hope and joy.  She let me sleep Friday night.  After my 10PM vitals, she agreed to let me sleep, only checking on me by slightly opening my door during the night.  At 6:30 AM on Saturday, she came in just as bubbly and hopeful as the night before.

Saturday:

My BP was still acting up…nothing like on Wednesday AM, but enough of an issue it required doctors clearance to release me, even though my orders were already in the day before.  I promised to push fluids….it remained steady….I was free to leave.  The taxi was waiting for us downstairs at 10AM.  DCA here we come.  The driver…hilarious.  He was telling us the most bizarre stories of fellow drivers during trips to the CIA and other “top clearance” areas around DC.  He pointed out several landmark areas for us….often with the eyes off the road far longer than my heart desires….but we arrived safely.  Soon, we landed at ORD and to our little cocoon of rest.

Saturday was hard.  The fatigue from the drug slammed against me like a freight train.  I was spent.

Sunday:

I woke up after twelve hours of rest feeling refreshed.  So much better than the day before.  There would be an occasional wave of nausea, but nothing worth even making a fuss over…a few sips of ginger ale did the trick.  The fatigue was better…and seemed to come in the late afternoon after Lee and I had escaped for some Mexican food.  I’m eating…because I know it’s important…but my appetite is a tad down.  My hips are likely doing the Cha-Cha over this….oh..those cupcakes from earlier in the week…I had four out of six….in Bethesda.  Still haven’t had a commercial red velvet cupcake that I say, “this is good.”  I’m a master of red velvet…one day I hope to try one that I find worthy of four dollars.  Until then…I’ll just say…mine are better.

I’m cleared to return February 6th for another week at the NIH.  Then two weeks after that, I will come in just for the infusion….before returning two weeks after that for another full week and first evaluation of whether I stay in or I’m removed.

Today:

It’s time to head to my primary for the labs required on the weeks I am not at the NIH.  I honesty don’t know if my veins will show up.  Praying they do…because I have zero tolerance for anyone that can’t get in on the first stick….I’ll confess…I can even be rude about it.  45 years of needles will do that to you.  Needles do not bring out my most Christ-like characteristics.  I’m honest about it….that counts doesn’t it?

So far, I’m not glowing in the dark and haven’t exhibited any Hulk behaviors….the day is still young though….

To be continued….

 

 

Nearing the Holidays

Next week is Thanksgiving.  Yes, you read that correctly.  As I have done in years past, the preparation of the home for all that is “Holiday” has started.  The tree is almost finished and then it’s onward to the other things that will be brought out this year.  Those that know me even a tad, know that I see magic all around me during the Holidays.  I still see it through the lens of a child….full of wonder and awe of every light, decoration, greeting of “good cheer.”  I want the sounds of every Christmas carol to ring day and night, along with the best of the best in contemporary offerings.  Dress a tad nicer on Sunday, in celebration of the entire Season…and the reason for it to even exist.

And yet…..in all of my wonder….the first ornament on the tree…for the past three years….has been met with sadness.  A bittersweet moment as I remember how excited she was to give her kiddos a selection of ornaments she worked so hard on during her cancer battle.  Then I remember her joy, her awe of Christmas and how she just couldn’t have enough ornaments on her tree.  I’ve never seen anyone who could  make a tree as beautiful as hers.  Growing up, we had blue trees, pink trees, white trees…green trees….and often with color coordinated decorations.  We may have not had but one or two gifts to open, but we always had the most beautiful tree.  As she got older, an artificial tree took over, but every branch was met with an ornament.  1000 lights?  Why not double?  2000 has to be better…each branch so carefully wrapped.  Days, countless hours…countless sharp looks to the man pacing across the room wondering why each ornament had such a specific spot.  Soon, after several ornaments are in place, my sadness is replaced with almost a giddy excitement to see how close I can get to her tree…every branch covered and decorated.

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In so many ways, my Christmas tree is a yearly reminder of the best parts of her.  Whether it’s me standing back wondering if there is room for just one more ornament, or is there a way to get more lights wrapped into the branches….what if that ornament could speak and tell me exactly what she was thinking the day she created it….these are my grown up Christmas moments.

Then, I step back and see the Hallmark ornaments we started for the kiddos the day they were born.  One for each year.  Our oldest was given hers when she married, but our son still has his proudly displayed, and each year we continue to add to both of their collections. Each one was carefully picked out by them…on sometimes short, sometimes long visits to Hallmark.  Each ornament a reflection of their personality or obsessions at that particular moment.

Today, as I finish the tree….I step back and see a life of memories….her memories, my memories, memories of my kiddos…and I see a tree full of such awe and wonder.  I see her.  I see my grandparents who are represented by memory ornaments.  I see my world through the eyes of a child….believing that Christmas magic is real…Santa does exist and snow holds magical powers on Christmas Day.

So, in my awe and wonder….and believing that Christmas magic does exist…make this one count.  Set aside the pain of days past…embracing the idea that everyone has a little bit more love to give during the Season and that Christmas magic really can heal the most broken of hearts.

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Jesus, Labels, and Evaluation

Anyone else feel as if they  have been put into a washing machine on high spin for eighteen months and suddenly the machine has been turned off?

I’ve started this blog entry literally more times than I can count.  I’ve gone to this place in prior blogs, but I seem to be further along now….and still facing just as many questions.  Folks, this election has made me weary.  Just flat out exhausted.  So many emotions, over so many months….taking this broken girl and her heart and her beliefs on a very unplanned journey-well, not unplanned…a journey I was already on, but this election accelerated it.

For the record, we can mark in stone that I love Jesus. I believe He died and rose again on the third day. I believe in the sovereignty of God.  I believe that His Word is the period at every statement. I believe in the red letters of Christ just as much as I believe the sun sets in the west.  Yet, with all that disclosed, I am changed now….I’m different than just eighteen months ago.  I believe, I am changed for the better, or at least in the process of that direction.  Some, may wonder if I have fallen to the wayside, some may take my journey as an attack on where they are…and I certainly don’t mean for it to ever come off that way…it’s an attack on where I am…where I was for sure.

I’ve identified with the Evangelical label for as long as I can remember.  Maybe I didn’t know what that was back as a young follower of Christ, but I said I was a Southern Baptist, and Evangelical like a badge of honor on my chest.  Almost a “I believe what’s right, you believe what’s wrong” approach.  Then, somewhere along the way, I began to not feel as if I “fit”….questioned my salvation…God assuring me it was secure….so why did it feel so lost in what should feel like home?  I knew I didn’t agree with what was being touted as “feel good theology” so I knew not to go there.  I knew I didn’t agree with the new “prosperity theology”, so I knew it was equally as wrong for me.  I knew I believed fully in the red letters of Christ.  So, I began my journey there….seeking to figure out what that meant for me in a world I had become so comfortable in…my little SBC bubble of life.  That was probably six years ago….maybe seven.  No one knew….not  my spouse or my children. There was a period that I was literally broken in half…and at a crossroads.  Few knew….and few know to this day.

I went to church.  I served.  All the while, questioning why I felt so lost in what should feel like home.  Why I would leave on Sundays angry…I don’t mind leaving convicted, but I shouldn’t leave angry.  Isn’t the point to attend and leave challenged to be working to be more like Christ…to be a witness to a world seeking hope? (Please do not take my comments as not loving my church-I did, I still do.  Some of the most amazing people I have ever met in my entire life. A man in the pulpit that loves Jesus with every cell in his body.  But this blog, it’s about my heart…my journey and the questions it has raised towards myself…towards an entire label.)

Then, we moved.  I was forced to leave my bubble of life….my comfort zone…even when I felt so uncomfortable sometimes, it was familiar…it was safe…it was mine.  I moved to an area where I couldn’t just look up a FBC in the phone book, go sit down and continue.  I moved to an area where my normal didn’t exist.  I moved where Jesus was loved, but church was far different…the pulpit was different…the mission was different and yet the same….everything was different and yet, with Jesus still center…the same.

During this period of adjustment, we landed in three churches before our current landing.  Meeting some amazing people, some of which I call “friend” today.  And like only our God can do, He tossed an election into my lap and said..ok, Kim, what about all of this?  Here I was, already deep into a journey of uncertainty of where I fit….and then He forced me to take in one of the ugliest elections in my lifetime.  One that broke every norm.  During the election, right when it was really starting to become nothing short of horrific to watch, is when we landed at our current church.  It was by chance we landed there at all, but then again, God isn’t into “by chance.”

Christine Caine was coming to speak at a local mega-church.  I am a huge Caine fan.  I had to go.  We “cheated” on our church at the time and went.  And it happened.  My heart, felt at home.  Still not sure what it all meant, but I knew with every ounce of Jesus in me…this was it.  This was what my heart was seeking….missing.  My heart needed Jesus presented with Biblical truth, but with a love everyone, love always heartbeat.  That attitude that before someone can really hear about Jesus, you have to meet them where they are..not where you want them to be.  That inclusion that still holds true to Biblical truth, but with a love that oozes from the pores of those giving out the love. Most of all, my heart wanted a pulpit based on Jesus, but far removed from politics.  My heart was weary…it was tired…and it was growing bitter.  No denomination on the door….just the Gospel of Jesus and the doctrine according to Christ.

Now, let me go back to before…and during all of this…the election came.  What I haven’t brought back up today really is how during all of this…even now…I was/am struggling to my very core about the word Evangelical.  The election just highlighted that struggle in my life.  Things were said and done that were so far removed from what I believe Christ wants in us as people…towards our fellow man, my heart just reeled.  Triggers took place that brought up childhood incidents that I thought were long buried.  Then…in all of it…I saw Christian leaders I admired come to the defense…fall on the sword to defend…for what, to me, only seemed like  man desperate for the power that would come with a result.  So much was the polar opposite of what I had grown to believe over a lifetime as to what Christ expected of us as human beings…what he so called out for.  I grew increasingly confused, increasingly angry…increasingly counting down the days to Sunday morning or Wednesday night where I could be reminded….not all are falling on the sword….not all are telling me it’s my duty as a Christian to fall in line.  I saw people I care about deeply hurt by words so offensive that they had to be “bleeped” on national TV.  I saw entire groups of people called out in such hateful ways that I grew even more angry.  I’m one of the “Evangelicals” people are talking so poorly about…I’m a member of this group that is supporting such hateful words.  How can that be?  I don’t agree with any of these words.  I don’t agree with the agenda of Jesus as a political tool for power.  Maybe, I’m not an Evangelical.  Maybe, I’m not the label.

As I said earlier, I’ve blogged about this before, but today feels different.  Today feels certain.  Today, my heart is not burdened with the label.  Today, because of a church that fed my heart words of truth in hope and love….because of a horribly nasty election, because of a son in the arts, because I never felt my heart fit….I can say with a peace I don’t take the label anymore.  I don’t want it.  I want to love Jesus…and love others.  Please know, this is my journey and is certainly not directed towards anyone but myself.  With that said, I won’t lie.  I don’t get it.  I don’t get why more didn’t speak out in loud voices….why the seat on the Supreme Court was more important than speaking out against the words that hurt so many.  It sent such a mixed and hurtful message to a lost world watching our actions.  We have worked so hard to stand in Biblical truth….then when in front of a world audience…we stood silent.  At least it seemed that way by the words by leaders and people of influence.  I’ll never forget the day women such as Beth Moore spoke out so directly against sexual assault or the words that implied it.  I’ll also never forget when we came out in swarms to eat one of our own, Jen Hatmaker, when she spoke her views.  Those that counsel her spoke to her in private…why did so many of us take to social media to literally eat her alive….and discard all the good she had done for women, lost women…prior to a statement that use the word “Holy” when well..what I think of that is so complex, it’s a blog post on its own (I support and love those I know in that community and that’s all that needs to be said.)…but I’m not going to tar and feather a woman that has been such a light to so many women. No one forces us to buy books or attend conferences with any speaker….show our disagreement by no longer supporting the work…but attacking someone so ferociously on social media was heartbreaking to watch.  I’ll also never forget the words of Christine Caine on our role as Christians towards Syrian refugees.  I will also forever remember being reminded that God puts angels everywhere…and what if He has placed angels among those refugees…and the tears He must shed as we, as a nation. turn them away out of fear. What if God is sending us a nation to show the love of Christ to…and we shut the door from fear? A fear we are told not to hold in our heart. What good is our “pro-life” stance, if we turn away the least of these out of fear, how is one life more valuable than another?  Dr. Russell Moore, James McDonald (post advisory board), Bill Hybels, Steve Carter, so many female authors and speakers….literally I cannot, even now, get enough of their wisdom on Jesus…the Bible, on how to be more red letter….

I’m still angry, but less angry each day.  Those stages of grief seem to apply to almost every facet of change in our lives.  I have to think I’m more to the “sad” stage…..far less questioning of my personal “what label do I want, if any”….and more a question of trying to understand how I got here…and trying to understand where others are in their journey. Sad, because I don’t understand.  I want to….but right now, I don’t.  I sense less anger towards all of it today than even just 24 hours ago…certainly less than three months ago.

I’m processing Romans 15 these days….trying to grasp that when we were told to welcome, embrace…it wasn’t with conditions….it was certain.

I’m thinking of Matthew 5…when Christ gave his Sermon on the Mount.

I’m thinking of how incredibly heartbreaking it is that any life on this earth needs a hashtag to be heard or seen.

I wonder how many fellow “Evangelical” folks are out there that have been on this same journey I have been on….even before the ugliness of 2016.  I’ve seen more women than men based upon folks I follow.  Why is that?

Would I have gotten this far in this journey without the move…without the election?  It’s pointless to even try to say anything but, no.  What idols have I allowed to be covered with the weaponization of Jesus?  Who have I hurt by views formed from life in a bubble?  Non-Christians, fellow believers?  Are my words today possibly words another person can take as hurtful to maybe where they are in their journey?  Please know…this is my journey.  I’ve likely made far too much of it public over the past two years….but I want to be able to go back two years from now and say..ok…progress has been made.

God has blessed my beyond measure with girlfriends who know my heart and my struggles and love me anyways….just as I love them in return…even when we  may be on polar opposite spectrums on so many things.  My tribe has always loved me in spite of me.  Just as Jesus does…in spite of me…He still loves me.

I’m thankful for this season and the conviction and necessity to really work on what Kim stood for..who Kim is as a Christian.  Realizing one walk will never look like another walk.  Realizing it’s ok to question things….ok to step outside your bubble and jump in…to the coldest pool on earth…trusting there is a warm hand waiting.

My son, my gifted musician, has been more of a catalyst than he can ever know.  His circle, his footprint on the world, forced me more than almost anything else before the move to dig deep…question…consider the idea that maybe many of my beliefs/routines were more man made that Christ made.  I’m forever grateful for this influence.

In a way, I am now in the dryer after being in the washing machine for so long…and on high speed for that last several months….hopeful that maybe when I come out…a few less wrinkles in place and a clean heart ready for this new stage.

And for those reading thinking Kim has gone over the edge…nah…..can’t go over what you went over years ago!

 

 

 

 

Tune-Up…Things We Say

It’s so strange that I sit here typing with so much in my head and a clear understanding that I am not remotely qualified to write more than, “My name is Kim.” This silly blog that I started as a way to process life with a chronic disease has become at times, therapeutic.  In a way, a virtual journal that some folks read and occasionally like….but more so an outlet to express a day, a week, a month, a season.  Today, I sit here typing with the question swirling in my little pea size brain of….did I start this for me, for you, because I was led to by God?  Maybe, it’s a combination of the three. (This question likely to never be answered fully.)  The move to Chicagoland has forced me so far out of my little “comfort zone” and into a zone where I am forced to really take stock into things I had just taken from others and applied….people much wiser than me…so surely no need to question, doubt, research….verify.  And yet….that’s what I have found myself doing now for a few months…..what if, as I have said before…this was the entire reason I am here….that it has nothing to do with a job…a city….maybe it was the only way God could finally get my attention.  Maybe He had no choice but to pull me up from my roots….

One thing I have been exploring are things I have heard for so long….assuming they were God’s word…or at least a close interpretation of it.  Phrases we say….without a second thought as to if they really are Biblical…you know…those things “good Christians” say.

I think the first offender has to be “God won’t give you more than you can handle.”  Malarkey.  Yes He will, and yes He does.  What is even the point in turning to God if we can truly handle even the hardest of circumstances on our own?  Isn’t the whole point of us being in this broken world to have us see that our only hope..our only way to navigate is by trusting God…something so much bigger than our tiny little humanness?  Everything is more than we can handle…everything.  It’s only because of Christ that we are able to put one foot in front of the other…..That’s the entire premise of faith.

Isaiah 41:10 (The Message)

 “But you, Israel, are my servant.
    You’re Jacob, my first choice,
    descendants of my good friend Abraham.
I pulled you in from all over the world,
    called you in from every dark corner of the earth,
Telling you, ‘You’re my servant, serving on my side.
    I’ve picked you. I haven’t dropped you.’
Don’t panic. I’m with you.
    There’s no need to fear for I’m your God.
I’ll give you strength. I’ll help you.
    I’ll hold you steady, keep a firm grip on you.

God never says, Oh Jacob….pull up your bootstraps and figure it out.  If we could handle it…why oh why would God have sent Christ to die on that cross at Calvary?  We can’t.  We didn’t. We never will be able to.

This next one has been swirling in my head a lot lately….maybe it’s all the political rhetoric floating around…maybe it’s being more connected to a health community where I know folks that are wonderful, Jesus loving folks…that well…struggle…whether it’s emotionally, physically or financially….struggle is a daily routine.  It’s the phrase, “God helps those who help themselves.” I see that, I hear that and all I can do is sit and go…nope.  That runs against the entire Gospel of Christ….Sally, well Sally is exactly where she is because she can’t help herself….well…what if Sally really can’t?  Sally, through  no fault of her own, has an illness that makes just walking outside her home a nightmare we can’t imagine?  It seems, to me, the attitude of self-reliance and self-righteousness just doesn’t match up with Matthew 16:24. My new thought process on this is God intended us to be a community…so that when one of us is not strong…weak…whatever the issue may be…we come alongside, with Christ as our captain….to hold that person or community up….and sometimes…that’s a very long gig…sometimes it’s not.

Matthew 16:24 (The Message)

 Then Jesus went to work on his disciples. “Anyone who intends to come with me has to let me lead. You’re not in the driver’s seat; I am. Don’t run from suffering; embrace it. Follow me and I’ll show you how. Self-help is no help at all. Self-sacrifice is the way, my way, to finding yourself, your true self. What kind of deal is it to get everything you want but lose yourself? What could you ever trade your soul for?

There are so many more things we say…I’ve said….because well…maybe it’s because I grew up with it and just assumed…maybe it was something I heard in a sermon one day….and I sit here and just type these words going, “Man….some of these things are just hurtful to others.”  I have a feeling this season for me might be a tad long…a season where I have a very long overdue tune-up.  Last night, in a message, the challenge of “Resolve” was issued…so, my “resolve” is that I’m checking my vocabulary…my phrases…and I am going to likely blog as I uncover more of things said…that well…sound all Christian…but aren’t…just man-made gibberish.

As I close for today…I just received a verse via a group text I am part of daily…I close with this:

2 Peter 3:17-18 (The Message)

“But you, friends, are well-warned.  Be on guard lest you lose your footing and get swept off  your feet by these lawless and loose-talking teachers.  Grow in grace and understanding of our Master and Savior, Jesus Christ.  Glory to the Master, now and forever.  Yes!”

I’ll make a point to title these blogs (my chronicle of my tune-up) so if you want to skip…well..it’s easy.  I’ll start with “Tune-Up.”  Kimmielou signing off….up since 5AM…clearly time for more coffee.

PS-Farmers Almanac is predicting a doozy of a winter here….currently looking for anyone that needs a house sitter on a tropical beach from December-March.  (Insert fact…Kim doesn’t like winter…even mild winters.)

Can a Gospel Christian Be Blue?

I was raised in the South.  I’ve lived in Mississippi, the suburbs of Memphis, Texas and Arkansas.

I’ve seen racism first hand.  I’ve seen fear of someone that didn’t look like “White America” first hand.  I’ve seen it all.  I was born in the late sixties….well after the Civil Rights marches…and still…I’ve seen it all. We live in a United States of America where not a single person over the age of 18 should have to “research” a white supremacist group.  We should all be so against the ideology of those groups that we jump to condemn  it.  America, we don’t want to go back to the days of segregation or people singled out due to the color of their skin or religion.  That’s not America.

I’ve seen poverty up close. I’ve seen homeless veterans on the street.  I’ve seen homeless single moms on the street. I’ve been able to see up close those who live in nothing more than a strong cardboard box with a door.  I’ve been a child of poverty and technical homelessness.

I’ve been part of the “poor school.” I’ve been part of the “rich school.”  I’ve been part of heated battles as districts have redrawn lines for attendance, and those arguments almost always are rooted in who parents wanted Joe and Mary to attend school with.  In 2016, we do not have equitable education in America.  I certainly don’t know the solution, but I do know it’s real.

I’ve been a child with no medical insurance.  I’ve been an adult subject to pre-existing clauses…a clause that can jeopardize the life of any American with a pre-existing disease.  Change jobs, no insurance coverage for 6-12 months on that condition.  I can’t agree to go back to that.  A mandate with issues also has some areas that protect our sick, our children, our college children.

I have never lived in a nation where the media was controlled or censored. I heard the threat of that being the case from the leader of the Red. I went back to eight grade Civics where I learned “to silence the media is the first step in silencing us all. ”

I remember the days we said the Pledge of Allegiance in schools.  The days where it seemed all was well in the United States.  We can’t go back.  Frankly, I don’t want to.  I am thrilled to know that we truly are the melting pot of the world.  Whether I like or agree with some of what we have now is irrelevant.  Give us your tired, your weary…..not give us your Baptist, or Methodist or whites.  Unless  you are Native American in heritage, you are a product of immigration.  I’m a product of immigration.  A mut.  I’m not purebred anything.  I’m a mixture of this and that, just like most Americans.

I am a Gospel Christian.  A Southern Baptist by denomination.  I am not like the WBC radicals.  I have to trust that if I can be free to practice my faith and not be associated with the radicals of the WBC, that others who practice a different religion are to be free to do so as well.  I cannot fear what I do not understand.  I cannot judge an entire group of people due to the acts of a radical few.  I would hope the same is said for not judging my faith due to the radical few within the ranks.

I’ve have a vivid memory of the Carter years, the Reagan years, the Clinton years, the Bush 1 and 2 years and now, the Obama years.  I’ve seen our country rise up in times of great trials….and I’ve also seen our country split into little pieces over a determination to “get their way.”  The word compromise has become a four letter word.

I’ve been personally chastised for even possibly considering not voting Republican.  That’s what good Christians do.  Vote Republican.

And. Here I sit today.  In disbelief that what I have been told is the “Christian” party has all but crowned a man that represents none of the values I hold to be true as a Christian.  Seeing remarks such as, “Well, I can’t stand any of his principles, but I’ll vote for him if he is the nominee…I’ll vote my party.”  “We have to take back America.”  From who? From what?  From people that don’t have white skin?  Jesus didn’t have white skin.

I sit here today in disbelief that I’ve seen a quote, “I voted Trump, but I won’t tell my kids.”  I hope there never comes a day that I am embarrassed by who I voted for.

I get people are angry.  It’s ok to be angry, but to vote with that anger.  No.  We have to vote with our values and our principles…or we become just as lost as the lost.  We can’t control who follows us, but if we look around and we are being followed by hate…what does that say about “us” or “I?”  What message are we sending?

So, can a Christian vote blue?  This year, barring a strong third party candidate, I believe it’s possibly the only way I can look into the mirror and have any hope of saying I voted for at least some Christian values and principles. Where “almost right” may have to be enough. The lesser of two evils, so to speak. This past weekend, HRC sounded more Christian than most of the candidates running Red and ten-thousand times more Christian than the Red leader.  I have to vote knowing the protection of the First Amendment is just as important as protecting the Second Amendment.  A silent America is far more devastating to our future generations than gun control.

Years ago there was a movement of WWJD.  WWJD? I can’t begin to know, but I know what he commanded of His followers…..love, spread the good news to the ends of the earth…but the greatest of these commandments was to love.  And that, is what I will do.  I choose love over hate. I choose love over fear.  I choose humanity.  I choose life, not just birth…all of it.

 

 

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

Adventures at Mayo

Mayo Clinic Mission and Values

Mission

To inspire hope and contribute to health and well-being by providing the best care to every patient through integrated clinical practice, education and research.

Primary value 

The needs of the patient come first. (from mayoclinic.org)

I just returned from my first “Adventures at Mayo.”  I didn’t know what to expect other than what I had heard from others and read on the internet.  How different can one medical system be?  Why is it difficult to get in?  What makes this campus in Rochester, MN so special?  And, why did I get in so quickly once the right department became involved?

A five hour drive from Chicagoland made more sense than trying to get on a plane.  By the time you factored in traffic, check-in time, travel time, etc…it just wasn’t worth the hassle.  So, off I went.  Excited.  Hopeful.  Nervous.  A little detour here.  I traveled across a good bit of the western side of Wisconsin.  I was amazed at some of the beautiful country Wisconsin has to offer.  Amazing rock formations, hills, small mountains that reminded me of Northwest Arkansas…just beautiful.  Having recently returned from the Eastern side of Wisconsin, I was pleasantly surprised.  Now if someone can explain to me Wis-Dells and all the waterparks!   OK, back to the topic.  So, I traveled and arrived the afternoon before day one of Mayo.  I found myself a tad bored, so after dinner a quick trip to Target was in order to help pass time.  I found myself in the book section and stumbled upon the “Grown Up Coloring Book” that has been around.  I, and my impulse shopping nerve, grabbed the book and proceeded to gather some colored pencils.  This ended up being my night.  I believe I missed my hobby calling.  Coloring.  I found it to be oddly relaxing.  I also found myself wishing I had about 100 additional colors to choose from.  I’m guessing I might be upgrading my color collection soon.

Soon, the night was over and it was time to head over to the Mayo Clinic for check-in.  Park. Check.  Try not to hit a pedestrian as you look at everything around you.  Check.  Coffee.  Check.  Walk in the front door.  Check.  Instantly realize this is something special.  Something different.  Double Check.  I proceeded to the area where I was told to check-in and get my picture made.  (Disclaimer:  I have been to many clinics.  Many hospitals.  It takes a lot to make me go, wow.)  Just in the lobby area, I went wow.  I cannot explain it.  You did not see patients walking around covered with stress.  You didn’t see a sea of white doctor coats.  You sensed a peace.  An assurance.   Next, over to the elevators for my first appointment of the day.  A beeper to call me for my appointment time?  Yeah!  The clinic’s are well organized, well ran and very patient focused.  My beeper goes off.  I first meet with the Otolaryngologist’s NP.  I was impressed with her knowledge, her compassion, her ability to ask the right questions in order to get a full picture.  I was even more impressed at how she was able to relax me during the dreaded scope.  Instead of telling me how I shouldn’t be, she worked with how I was and used whatever she had to use to help me relax.  Music, calm tones, quiet room….I mattered.  Next, in walks the Doctor.  (He had a student with him too.)  Seeing doctors all in suits is new to me.  You can’t tell which ones are students and which ones are seasoned at their craft.  The playing field isn’t about your coat….it’s about the patient.  I never really realized until this week how intimidating those white coats are.  They create a line in the sand in the relationship.  Trust in doctors is not my strong-suit.  I will analyze a doctor up and down and back again.  I suppose this is an unavoidable part of living with a chronic illness and having poor result/outcomes that in hindsight were because I trusted too blindly.  So, imagine my surprise, when within ten minutes, I had a full confidence in this physician.  I think God knows this character trait in me and knows that I needed that instant “click.”  More on that later.  After going over what he saw and what he suggests, we agreed that more needed to be known on my anatomy that couldn’t be visualized by scope.  CT.  Scheduled.  Coordinated with next appointment so that both CT scans would be done at the same time.  Three months ago I heard a seasoned ENT here in Chicagoland say that my anatomy was the “worst he has ever seen.”  I am thankful today for a meeting where my anatomy did not shock or scare or worry the doctor.  That my virus history wasn’t new to him.  I’m a fan.  Within one hour of my appointment, his dictation was ready on my Mayo patient portal.  Impressed.

I had about a two hour window between appointments on the first day, so lunch was in order.  Right outside the clinic area is a beautiful area known as “Peace Plaza.”  From the lobby I could see a restaurant called “Chesters”, so I decided it was fate for us to meet.  (I am so thankful I can eat alone.  It has served me well in my lifetime.)  Seated.  Cornbread with maple butter???  What!!!!  Yes, I will take a slice of that.  Slap your Momma good!  (Don’t slap your Momma, but you get my idea here.)  What to eat for my meal???? What to eat???  Salads.  That sounds good…so I went with the Chester Chopped Salad.  Seriously good stuff.  In house roasted chicken, apples, fresh spring greens, eggs, homemade croutons, sweet corn and bacon….what is  not to love on that list?? Time for pulmonary.

Back to the clinic I went and up eighteen floors….I seriously don’t like anything above about ten…but ya gotta do what ya gotta do.  The second time of being called back earlier than my appointment time…seriously, I think that in itself is a five star rating!  Pulmonary is not my favorite department.  I can say that about every pulmonary department I have been to.  I can’t explain it.  It seems to be the department I struggle the most in with that all-important “click.”  After a review of  my history and a chat about ideas of where and what we need to do, I was rescheduled for a longer appointment on day two after more tests were available.  Ok…here’s where I am going to give another shout.  I was not charged for day one clinic in this department.  Even though it was a good forty-five minutes, I was not charged.  Doctor told the desk to make the second day my “official” appointment.  A different way of doing medicine.  I told ya.  Day one at Mayo was coming to an end and this chick needed to just go and put her feet on the bed for a bit and process the day.  Soon, hunger set in and the decision of where to eat began swirling around.  Everyone kept telling me I had to try wall-eye…..slight issue….I only like two fish.  Catfish cooked Mississippi style and Halibut.  I decided I would at least consider it, so I thought hey…there’s a Canadian Honkers (Ok…I laughed…it’s just a hilarious word…Honkers.) right by me.  I walked in, grabbed a table….menu.  Began to realize this was just a Denny’s type establishment in disguise.  No…Kim can’t do this.  So I ever so politely excused myself and opted to go back to Chester’s where I had the most wonderful lunch earlier in the day.  The homestyle turkey dinner and a delicious dessert of banana cream pie and this gal was full and ready to stick a fork in this day.  I remember 9PM and I remember 9:45PM, but not anything in between those two times….so it was an early night.

Day two started early and included a bit of fasting in order to be ready to the contrast that would be needed for the tests.  Anything that involves the need to start an IV line causes me to have near panic attacks.  I suppose that’s just part of the journey when your veins are full of scar tissue and the idea of enduring multiple sticks to hopefully thread an IV are your norm.  Normally, an injection of lidocaine at the IV site along with warm towels is the only way we “might” get a thread on the first try.  The precious girls up in the IV room kept assuring me that Mayo was different…to trust them…they could do this without the numbing medication.  So, my arms were wrapped in warm blankets, then it was time to find a vein.  She quickly saw the vein she wanted and decided to spray a topical numbing medication on my skin just to help keep that area of skin remain relaxed (I believe it was honestly due to me being a baby in the IV room.)  Deep breath….and it was IN!  Zero discomfort.  It was IN! I wanted to hug her.  Now that I know what its supposed to be like, well, Mayo is different.  Time for scans.  So, honestly, how different can scans be from one institution to another?  It’s a scan.  Even that is different.  Most was the same until it was time to inject the contrast.  My arm placement was different, the way that they administered the contrast was different (No sensation of you just well….if you have had contrast you know what I am talking about here.).  When finished, I was handed a bottle of water to start my four bottles by the end of the day flush.  Different, yes indeed.  Back to Pulmonary.

I wish I could pin point my issue with Pulmonary everywhere I go.  Is it that I know too much about what works and doesn’t work that flags are always going up?  Is it that I’ve already decided what route I want to take and haven’t found the one that says it without me bringing it up first?  Is it just the nature of a pulmonologist and their personality?  Is it just me and my over-thinking nature?  Or is it that this isn’t the department I should be in first….that maybe the process is off?  We went over the scans from the  morning and decided that we were missing a piece of the puzzle in order for him to make a decision on where to go from here.  So, I am to get that puzzle piece sent priority mail directly to his office.  Then a meeting will occur where all the information will be sorted through.  Looking for the smallest of change…a clue.   And that was the end of this first Mayo Adventure.

Where we left things at Mayo.  Otolaryngology has their scan results and has emailed me their plan.  I just have to set the date for what they want to try.  Pulmonary-we are on hold.  I learned a few things that I didn’t know while there…some things I should have known for years…thankful that I know them  now.  It really is a different way of doing medicine.  You can’t really explain it…you just have to be a part of it.  The level of care from front desk to the top is greater than anything I have ever experienced.  Watching patients and such sit at the grand piano in the lobby and play hymns and sing-along songs…watching women walk up and join in harmony…..while the sun shone brightly in through the beautiful windows…just a peace that you normally don’t feel in any clinic setting.  I’m a fan.

It was time for the drive back to Chicagoland.  It was a time to process the visit and logically go over the events of the past two days.  Was my uncertaintity of the Pulmonary a personality issue, a flag, me over-thinking….what was it?  I really don’t know much more in that area than I did last week….was it simply due to that missing puzzle piece?  Then the phone rings and I let it go to voicemail.  It was MD Anderson.  About the time that the Mayo process started, I had made it past the gate-keepers of MD Anderson and they had requested my medical information.  I was in.  The appointment was mine.  Instantly, I am wondering if this is God’s timing to my questions…or simply a distraction from where God had led me already.  I sat on this voicemail until the next day.  Praying over wisdom, discernment….so I returned the call.  They see my medical file a little differently than Mayo.  I sent out a SOS to a couple dear friends and made that phone call to my Sis.  I prayed for just wisdom….take it..not take it…why are they starting me in a different department than anyone else?  Remembering that MD, like Mayo, doesn’t just take appointments.  It’s not like calling a local specialist.  My file meets their area of expertise….Ugh…grown-up life..sometimes…just saying.

Long story short, I am taking the appointment in Houston.  I could have gone in two weeks, but in fairness to the pulmonary folks at Mayo and my need to see their plan, I have opted to go early September.  After that appointment, I plan to allow Mayo Otolaryngology to proceed with their plan.  At MD Anderson, I am starting in thoracic oncology.  I’m starting where I would be treated.  Different approach.  Different eyes on same file.

In all of this, I am dealing with a touch of anger.  I am angry that everyone isn’t allowed the level of care I received at Mayo.  That should be the standard for each of us…no matter where we are.  I’m angry that doctors don’t refer patients when the doctor isn’t fully qualified.  Learning something from a book while in medical school does not qualify you.  I’m angry that any patient has to feel that they don’t have knowledge or power in their healthcare.

I’m also dealing with gratitude.  I am so grateful that we have an insurance plan that allows me to seek the very best care I can find.  I know many don’t have that option. That should change.  It needs to change.  Geography and income should not determine your medical outcome.  My life is of no greater value than the person next to me….so I am thankful that I can go.  I’m thankful for the ability to travel and the huge support team I have in my RRP family to help guide my way.  People I have never met that I have cheered me on, supported me, provided vast amounts of information….I am thankful that I am not fearful of traveling alone or facing doctors and questioning their words.  Grateful.  I am thankful for friends and my family.

I am in awe of God who has clearly guided each step of this journey these past few months.  I do not know what tomorrow will bring, but I know He guides my steps and has gone before me.

Psalm 121

I lift up my eyes to the mountains—
    where does my help come from?
My help comes from the Lord,
    the Maker of heaven and earth.

He will not let your foot slip—
    he who watches over you will not slumber;
indeed, he who watches over Israel
    will neither slumber nor sleep.

The Lord watches over you—
    the Lord is your shade at your right hand;
the sun will not harm you by day,
    nor the moon by night.

The Lord will keep you from all harm—
    he will watch over your life;
the Lord will watch over your coming and going
    both now and forevermore.

So, now we wait for the Mayo plan and prepare for Texas.  I plan to eat Tex-Mex daily!  Texas brings a chance to hang out with my aunt, my sister and hopefully some of my Texas friends.  It’s almost surreal that where my RRP journey began…it’s going back.  Life really is a circle…..and somehow we are all woven together within that circle.