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.

 

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.