Kill the Paps-Episode One, Update Three

“Isn’t it a bit unnerving that doctors call what they do practice?” —George Carlin

We are almost two weeks post infusion #3. We are almost one week from the first scan since beginning Avastin. In other words, this cycle is a big deal.

My J was in town for his break for #3, and I sure did love his face sitting beside me during the infusion.  He is the perfect infusion partner-quiet, mindful, and unshakable.  My favorite introverted extrovert.

The day began with labs, and given the drama of the last infusion, we decided to wait on IV and break out the butterfly.  Seems I am now tagged to lay back for labs….this is what a drama ridden blood pressure will do to you-tagged, noted, flagged.  All went well and off to clinic.

Clinic.  “Wait, that’s high for me.  Can you recheck that?”  Near mirror readings.  It seems I may have developed one of the most common side effects of Avastin, high or elevated blood pressure.  Was told to monitor it over the next few days and report back via email on Monday.  (Further down is an update.)  Released for infusion.

After some celebration by infusion nurses that came to my chair over my scheduled port (Yes, I’ve decided to get a port.), a tag team effort begin to get an IV in that would hold and flush.  Two attempts.  The second landed in the top of my right hand, and it did flush, it did have blood return….but man….was that little baby sore!  After playing with tubing, taping, anchoring and getting my hand and arm positioned on a pillow to relieve some of the discomfort, drugs were up and the “IV hold” dance commenced.  I had the same nurse as infusion #2, so it was nice to see her being so helpful as we worked to complete the infusion and baby the IV.  She told Josh how sweet I was, and I made sure he heard that!  Due to the IV being in the top of a very tender hand, we did have to slow the rate down just a tad more due to burning.  We chatted about the process once a port is in, and let me just shout this-I CAN’T WAIT! My veins are all doing a happy dance, and I know not only will the process be easier on me, but less stressful on the entire infusion day team. Years of anesthesia running through my veins, veins that are just tired….mixed with running a drug that prevents the formation of new capillaries, and I think we are all in agreement….praise hands to the port!  I’ve received so much support on this decision from those in my RRP community who have already walked this road, the spouse, the parent, the son, the daughter, the nurses, the oncology team, friends who have walked the road of regular infusions….I know it’s the right decision!

Infusion ran.  Done.  IV out…time for lunch.  We went back to Ponce City Market and had the wonderful shrimp po-boys again!  Yummy, sweet gulf shrimp!

The rest of the day I spent just being lazy.  We had been so busy while Josh was in for break, we all were happy to just “be” and take in Stranger Things.

Infusion #3 notes:

  • Nausea night of and some the next day.
  • Back pain-this one was new.  It lasted two days, and was more evident at night when in bed.  It was not fun.
  • Elevated blood pressure has not left, but it is staying somewhat consistent.
  • Cough seemed increased first three days and has grown less to be back where it was prior to infusion #3.

So, all in all, I cannot complain about this process.  IV access has been the drama for me, and I haven’t really worried about the blood pressure as that’s an easy fix and will be temporary.

Now, to set the anxiety on the table and walk away from it as I head towards the scan next week.  The scan determines if we proceed to the next cycle of three.  No progress, we cancel port procedure and any further infusions.  We are all so certain we have seen changes, that I know it will be a huge crushing blow if there has been no regression of disease.  I’ve read all the “read this verse”….I’ve listened to all the “listen to this song”….and I have readily admitted how mad I get at God sometimes over this disease and all it has brought.  I’ve also tried to focus on what this disease has brought to me that I cherish-and that’s my RRP community and some of the medical staff along the way.  I really do have this extended family, most of whom I have never met, that gets me…gets all of it.  I wish I could undo the stress this disease has brought to Lee, Josh and Meg….and to my parents.  I guess that’s what I hate the most-what it has done to those around me.  As we sat in church this past weekend, and Passion band was blowing the roof off the building…I kept this thought in my head-oh, how I wish I could sing…a voice that would be used in a mighty way.  That’s my bucket list #1 item.  My heart sings so loudly….and I dream of my voice matching my heart.

So, we march towards next Wednesday…..with fingers, toes, ears crossed.

Kill The Paps-Episode One

This will be the first entry in the series that will follow my journey in the use of systemic Bevacizumab (Avastin).  I hope to mix the science with some humor and maybe even a dash or two of joy/hope.

RRP

While I breathe, I hope.

Episode One.

One of the first pharmaceutical treatment ideas that was discussed after my lack of response in the NIH trial was pursuing systemic use of Bevacizumab What is Avastin?  Now, you are likely aware of the hurdles and obstacles that walked out in front of my bus..primarily that of insurance approval, followed by the amount of work that I, as a patient, was having to invest into the idea.  Off-label, especially with no clinical trial data, is a hurdle most insurance carriers simply don’t want to be part of-evidence based medicine is the name of the insurance game.  With a few papers on limited use as the only “pay for this” ammunition, it’s been an uphill battle while also wearing a fifty pound backpack.  (Which basically is the same as a “sloth.”

Fast forward to this past week.  Background on most recent surgery-my tracheal disease is in high gear.

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December 2017 Tracheal Disease

I’ve wanted to go down this therapy road for months now, so to see the disease in such an aggressive phase, as well as the pulmonary involvement, I became even more determined to make this happen.  Emory has an outstanding RRP practice.  What I learned this week is that they also have an outstanding Head/Neck Oncologist.  Dr. Saba believes in this idea.  He agrees with this option for my case. I’ll be his second RRP patient on this protocol.  The ball started rolling and in warp speed….a schedule is set, pending a stable CT scan.  I’m more important than the insurance hoop….they will get me over that hoop-not my burden.  We have a plan.  The plan is in place and I have one job-show up.  No hours spent working for approval, no hours spent digging for every shred of evidence I can find in how this treatment has worked in several RRP patients….my only concern is making sure I am ready for infusion day and following my “to do” list.  (Well, and staying away from Dr. Google on side-effects, possible complications-little information is available on side-effects, complications in the use of Avastin as a stand alone treatment.)

There’s anxiety over what to expect, as we all react in such an individualized way to any medication, but especially those used in the oncology field.  Will I be as sensitive to this drug as I was to Avelumab?  Avastin is a VEGF VEGF How It Works, while Avelumab was an immunotherapy (PDL-1 inhibitor How Do PDL-1 Inhibitors Work).  There’s anxiety over my pitiful veins holding up, but a port is something we want to avoid due to increased infection risk.  (Ha, well, maybe the anxiety is over the IV in general….I loathe those little creatures.)  A prayer for urine proteins to stay normal, blood pressure to not spike, and for no bleeding issues to arise!  (We do know that my Benadryl push needs to be diluted and slow, so that’s one less issue to worry about on infusion days! Also, am I the only person on the planet that drug doesn’t render comatose?)

So, there you have it…..scan, three infusions, scan, if regression-repeat and then work into a maintenance routine.

While on Avastin, there will not be any OR procedures. Hopefully, this will allow a long period of maintenance, a much needed break from the OR, a break from this chronic cough, and will work to prevent anything from converting.  Will it kill the virus? No.  Will it hopefully give me some relief until science catches up to the mechanism of the virus-hopefully.

I’ve included links to the few papers we have available on systemic use of Bevacizumab (Avastin) for those with aggressive tracheal/pulmonary RRP that may be interested.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5551929/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4186578/

https://www.ncbi.nlm.nih.gov/m/pubmed/28657692/

https://www.ncbi.nlm.nih.gov/pubmed/27996119

 

 

 

 

 

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.

fullsizerender

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….

 

 

Really Big Needles

I am not a fan of needles.  I mean, really, who is?  If you are, I’m sorry, we just can’t be friends.

Most of you guys have been following the saga of my lungs and such for almost two years now…crazy…almost two years.  One would think that I would be further along in this little journey, but slow and steady is my mantra…plus, I’m a classic over-thinker, and I have way too much access to google-ya know, Dr. Google.  Anyways….I did it.  I pulled that trigger this week and admitted that two spots were likely better off identified than left hanging out to their own little march.  I had a lung biopsy.

Both lungs have several areas, but on the left are two decent size nodules that I think show out to put the right side to shame….should I tell them that I like the right side more because it’s not a show off?  Nah….they would probably act out like a two year old by going all ninja on me….we will just let them keep thinking they are the belle of the ball.  So, the left side was the focus this week.  Decision was made to go after the one that was easiest to reach.

I have to say that once the team and I made the decision, outside of panic moments that occurred when I went to Dr. Google….I was fairly calm about the whole process.  Thankfully, I have some folks who have walked this road already and they were so awesome to answer questions and give me “real world” experiences.  Whether the biopsy came back papilloma (Squamous Cell) or cancer (Squamous Cell Carcinoma), I pretty much already had my plan in place and knew what to expect either way.

So, off to Mayo I went.  As with any other trip to Mayo, it began the night before with dinner at Chester’s.  Seriously, it’s good eats.  Now….imagine my heartache when I realized my favorite menu item was no longer on the menu!  I may or may not have whined to the waitress more than once.  She encouraged me to order the Lobster Mac-N-Cheese and it did not disappoint.  Now..was it as wonderful as my Thanksgiving Dinner on a Plate I had come to love…why of course not.  You guys know I love Christmas…. Thanksgiving is close to Christmas; therefore, I love Thanksgiving food.  Who am I kidding…I love food…and dessert-365 days of the year.

The  morning came and off I went to check in for labs and such before I headed up to the procedure floor.  Blood draws…such a mundane task, but so thankful for such an easy way for information to be gathered.  (Hint…always ask for a butterfly…trust me…ask!!!) Then it was time to go up a few floors and check in for procedure.  I kept asking folks to volunteer as tribute…no one did.  Note to those reading…DO NOT check in early for procedures….you will be called early…just saying…..so called back.

First was the lovely ten million questions that I have come to assume is an attempt to catch you in a huge lie about your weight or height or drinking or smoking habits…then came my conversation about my veins and what typically can go wrong…what always goes wrong and before you could blink, the nurses went and grabbed an anesthesiologist.  (Smart girls!!)  During his search and destroy mission, we chatted and his brother did his undergrad and grad at my son’s grad school for Cello performance..small world.  I didn’t get a sense of great pride from this brother about his brother…but I suppose if you can’t knock out excerpts from classical pieces from the 1800’s..well…jealously.  I mean..doctor..sure..that’s awesome and all…but classical musician…that is so much better!

A little IV help for those who are a hard stick:

  1.  Have them wrap arm in a warm blanket.
  2. Ask for anesthesiologist or oncology nurse to start your IV
  3. Know where IV’s are the easiest to thread and ask them to use that area
  4. Do arm weights to build up muscle mass in your arms.  I was told all the medical reasons as to why this works, but again…drugs.  
  5. Drink plenty of water the day before/day of an IV stick
  6. Ask them to not dig for a thread
  7. Get the local.  If they won’t give you a local, see number 2.  Those two can.  

With the IV in, I was sent back out to wait my turn to change clothes and go to holding.  Can I just say that was a really short wait….it really wasn’t, but when you are still wondering just what can you do to make it where you can leave and go have dessert..it seems like a short wait!

Holding time came and before I knew it I was being rolled off to the procedure room.  I wasn’t fearful, mostly just desiring to be fully aware of each part of the process.  Surprises are not my thing-at all.  I’m an order gal.  I prefer my days to be post-it note organized-or at least appear that way.  I can go with the flow, but that flow has to be about a 1MPH flow….anything more than that and well….you best have some cake to go with that chaos.

Dr. Welch and his team explained in great detail what was going to take place.  As I was positioned for initial scans, I was given the first dose of medication meant to keep me relaxed so that the biopsy would go more smoothly—not sure if that is for the patient or the doctor performing the biopsy.  As they then positioned me and marked the biopsy area, it was clear the meds had done much of nothing.  Another dose…..another dose….fourth dose..bingo, we have a winner!  I would be a very expensive addict given my tolerance to such medications.  Initial bee stings as site was being numbed.  Another slight pressure of a bee sting as the wall was numbed.  A few pops of the biopsy gun, and it was done.  I’ve had more breast biopsies than I can count and I truly believe this was easier-discomfort wise, risk wise lung beats breast though-lung risks will honestly freak you out a tad if you let them.  I was then wheeled back to observation on my left side…..passed that faithful man of  mine and of course, I hold up the peace sign.  (I am obviously very chilled at this moment….peace sign?  Really Kim?  Invoking your 1960’s birth decade I guess.)

Let’s just say…if you have had a lung biopsy, you are a popular patient for that first two hours-that critical window where most complications will occur.  I did have a slight hematoma come up that required some beautiful marker drawings on my back and some periods of pressure as they worked to relieve it and make sure it wasn’t developing into something more.  I tried to rest. (Insert laughing of everyone who has spent any time in a hospital setting…the word rest….) Soon it was time for the initial X-Ray to check for pneumothorax and any bleeding that might be taking place.  Check..Done…still, so very chilled.  I think you could have told me North Korea had a nuke coming this way and I would have held up the peace sign again. (Suppose I shouldn’t joke about that given the events of yesterday.)  Keep in mind, not only was I floating on the meds given in the procedure room, I was also on a narcotic to control my constant cough for 48 hours…..I was basically…zoned out sitting on Mars. Anyhow….about 45 minutes later, the team walked in and asked if I was ready to be released to the hotel.  Wait?  What?  I can go????  I was told a six hour hold, so to be leaving so early….seriously folks…that’s God.  I had zero evidence of even the tiniest of complications.  Nothing!  (2 1/2 hour hold!)

So, after being educated on some very scary things that can still happen after release, I was on my way.  Given my little drug fest, I had to do that whole wheel chair thing.  Here I am, chilled to the core, and I get chatty Fred as my escort.  If you know me well, you know how annoyed I was the entire ride down.  Things were going well…..we stopped and Lee ran in to a philly steak place to get me a sandwich….I stayed in the car…..Kim, sitting up, full of drugs…let’s just say I was going down fast…sweats, spinning world…all that joy.  Sent Lee a text…bring me an ice rag NOW.  He came out…and because he was much smarter than me…turned on the car blasting the A/C at winter levels.  Whew….can I go to bed now?  Kim was coming off the drugs. (My little episode gives me even more empathy towards those battling addiction…my four minutes compared to what has to be days…I can’t imagine the strength.)

Back at the hotel, I resume my left side resting and nibble on my sandwich that honestly was nibbled on only to prevent another full blown world spinning episode.  Finally, rest.

The next day, still on narcotic for cough. I felt drugged…still…not at the same level as the day before, but I wasn’t firing on all cylinders for sure.  We ran back to Chester’s for lunch and then it was time for the clinic appointment for results and being released to go home.

Prelim results: as we all hoped and expected, squamous cell papilloma.  No signs on conversion in the samples taken.  Due to having so many nodules, we are going on the assumption the same will apply to those nodules as well.  It could not be true, but that’s the assumption we are on right now.  So, where does this leave me in this little saga?  On the left, I have the one that was sampled and another one sitting on the pleural wall.  (There are some tiny ones in the left as well, but they seem stable.  The right has some nodules, but they are still too small to sample (7mm and less).) The area against the pleural wall has changed…a good bit.  It has a good bit of cavitation and that can be problematic.  Where we are today is deciding if I want to have the lung resection and remove the two on the left leaving me with only nodules 7mm and under and then go to trial….or skip resection and go straight to trial.  Either way…I’m going to trial-NIH/NIC Baltimore.

I go back to Mayo first week of October to visit with the thoracic surgeon that is focused on VATS procedures.  My goal, if I proceed, is to avoid a full open procedure.  To do the resections via robotic surgery.  I’ve had an open procedure before.  I know what that involves and I am going to have to work super hard over the coming days to put that experience on a shelf so that I can make the best decision on how to proceed.  Leave the two large ones on the left and hope that the one on the pleural wall calms down…and that the one we biopsied stays benign and enter trial….or, resection and then go to trial to work on the smaller ones that would be left after resection.

Pulmonary papilloma just stinks.  When the doctors at Mayo talk about how rare you are…you know you are rare.

So, that’s my medical update.

Have to say this…some folks read their Bible while in the hospital or doctors office for peace…some pray….this chick..well I have found there’s nothing better than an iPod playing Bethel Music, Hillsong, Nockels, Jobe  to put this mind and heart at ease.  Find your place and what takes you there….doctors, nurses all want you to be at ease.  It makes their job easier, procedures easier and most of all….puts a smile on your face!

Please, do not think I am strong or anything close to that.  I’m pitiful.  I whine on a lot of days about this path…I really had rather not be on it…but I am. I don’t understand why, and I very likely won’t in my time here on Earth. All I can do is focus on one step at a time…one pebble at a time…and try not to view the mountain.

Peace out folks….time for more coffee.   (Enjoy this coffee wisdom.)napkin-mayo

 

 

ASCO, Patient Advocacy and Hope-Entry One

This will be a multi-piece blog.  One blog simply isn’t enough.  I recently had the honor of attending ASCO on behalf of the Recurrent Respiratory Papilloma Foundation (RRPF).  ASCO stands for American Society of Clinical Oncology.  It is the world’s largest gathering of specialists, advocates, researchers, etc…for the field of Oncology-which represents more than just cancer care.  For todays blog, I am going to focus on a piece in the Global HPV session….why that, in what can only be described as  “sea of information” to send out?  HPV and RRP are siamese twins, so to speak.  The future of HPV will and does impact the future of RRP.

So, here we go.  Let’s go ahead and disclose this blog is about the HPV Vaccine.  Stay with me…it’s good stuff.

Let’s get a little HPV background:

  • Most humans that are infected clear the virus within 180 days.
  • Eighty percent, yes 80%, of the population has been infected by the age of 50.
  • HPV causes 600,000 world-wide deaths per year.
  • Currently, the HPV vaccine is available in 34% of countries world-wide.
  • Brazil has the highest death-rate due to cervical cancer, a HPV positive cancer.
  • Science has proven that HPV is found in cervical cancers, many head and neck cancers (especially non-smokers), anal cancers, penis cancers, and most recently the connection to some NSCLC (non-small cell lung cancer).
  • There is a social stigma attached to the HPV virus, especially in the U.S.
  • Recurrent Respiratory Papilloma is NOT a sexually transmitted disease. 
  • Transient HPV infection can be invisible
  • 70-80% of all cervical infection is HPV 16/18
  • WHO guidelines call for HPV DNA testing along with pap smear cytology to show with a 90% sensitivity no HPV infection.  (A negative pap smear does not mean you are not a HPV carrier-hence the need for HPV DNA testing.)
  • Oropharynx cancer shows 80% are HPV positive
  • There are over 200 types of HPV
  • HPV 6, 11, 16, 18 are the most common strains found in cervical, H/N, lung and RRP as well as anal/penis.
  • Various medical organizations recommend HPV vaccination for all boys and girls aged 11 to 13, adult males through age 21, adult females through age 26, gay and bisexual men, and men and women with compromised immune systems through age 26 if they did not get fully vaccinated at a younger age.

There’s just a tidbit of the far reaching impact of the HPV virus.

We have something readily available to us that can and does create a dramatic reduction in infection rates of genital HPV.  We have something readily available to us that has shown scientific promise in future tumor prevention in those already infected.  (RRP studies are still in infancy and while there is some evidence it can help a patient already infected with RRP, the information is too new and data pool too small to truly include in this blog entry.)

I hope at this time, as a reader, you are going what??  What do we have that can prevent me from getting nine strains of HPV and drastically lower the chances of me developing certain cancers?  What can even show some promise in a person already infected with HPV to help lower their viral load?

Gardasil 9 by Merck.  A three dose series vaccination that has proven to be safe and effective.  (Protects against nine HPV strains, 6, 11, 16, 18, 31, 33, 45, 52, 58)  Vaccination can begin as young as 9 years of age in both girls and boys.  Nine?  But doesn’t this vaccination give my child permission to be sexually active?  No.  This vaccination will help protect your child from infection of HPV….oh, but my child is going to wait until marriage….great.  Wonderful.  What if they marry someone that is infected?  What if, God forbid, they are in college one day and raped behind a dumpster?  What if someone puts a drug in their soda at a random place one day?  Wouldn’t you like to know that you did everything you could to insure their safety from infection and future cancers?  And then there is the population that isn’t talked about…..RRP….how does that relate to this vaccine if it’s  (RRP) not a sexually transmitted disease?

RRP-typically HPV 6, 11.  Juvenille onset usually presents by the age of five.  Wait?  A five year old with HPV?  Yes…..a five year old.  A three year old.  A one year old.  How? The truthful answer is the answer isn’t finite.  It’s a muddy answer…but what we do know is that the child, whether during birth or in-utero is infected by the HPV virus.  Most children are able to clear this virus with their immune system…but those few that cannot….develop RRP.  (See http://www.rrpf.org) “Ok, but I still don’t get how the Gardasil 9 HPV vaccine relates.”  If the parents of that child were not infected (did the Dad infect the Mom, was the Mom already infected…and on and on), that child, based upon how HPV 6/11 works should not be infected with the virus to begin with…no development of RRP.  Now, with all that said, the infection route for the child is still muddy.  The only certainty is that the child became infected.  The how, when, why and where are still full of uncertainties.  If for no other reason than to potentially create a “herd” immunity to certain strains of HPV….to, in theory, maybe one day prevent another child from developing RRP…vaccinate.

While at ASCO, we were presented some very compelling data to the vaccine and its success rate in dramatically decreasing infection of genital HPV.

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Yes, you are seeing correctly.  This is dramatic.

600,000 deaths world-wide each year.  That’s enough to justify vaccination of our children.  Upon speaking with a researcher at St. Jude, he gave a compelling argument as to why vaccination is not an open door to sexual activity.  In their experience, they actually believe it brings a reduction to sexual activity…the conversation regarding the reality of sexual activity creates knowledge in the child about dangers related to unprotected sexual activity as well as the desire to protect themselves from infection.

What if you have already started the vaccination process and didn’t choose Gardasil 9? You can switch to the Gardasil 9 series.  What if I took the prior vaccination?  You are good.  While the new vaccine does protect against more strains, you are protected from 6, 11, 16 and 18.

It’s safe (http://jama.jamanetwork.com/article.aspx?articleid=2088853), it’s effective and it could change the future in regards to several cancers.  It gives me great hope that due to its safety and effectiveness that a cure for RRP is truly around the corner…which is my advocacy focus.

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

Fifteen days and counting….

“What you fear is what you must conquer.”  Akita

What I fear, is what I must conquer.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10

In my fear, I am not alone.

 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31

I my fear, I will not grow weary.  I will soar.

Today, I have been able to just stop from a whirlwind of this and that and let reality of fifteen days and counting sink in.  In fifteen days, I will go into the Mayo hospital and have general surgery to address several issues.  Issues that I have known about and ignored, issues that I have learned about and addressed, and issues that are yet to be fully known.  It’s surgery number 250+….I don’t even know at this season what that real number is past the baseline.  It’s no longer that drill of “routine surgery for RRP”….I passed that street years ago.  I’m on the cusp of forty-nine years of life and I am admitting my fear.  Fifteen days and counting….and then three days until we know if I am in the 1%.

I fear anesthesia.

I fear rare complications. (Once you have had one happen, it forever alters your approach and confidence.)

I fear the plan not working as hoped while in the OR.

I fear recovery-knowing what it will feel like when I do wake up and the side effects I have from anesthesia.

I fear knowing that my Leebo is sitting on the other side.

I fear not making it to 50, 55, 60.

I fear hearing that it has converted.

I fear the unknown.

I fear the known.

So, in my fear, I am going over and over my messages at the top of this posting.

I miss the days where I didn’t know…….the days I just viewed it as another “routine” event.  My anatomy, disease progression and complications robbed me of “routine.”  CT scans and PET scans have removed the word “routine” from any part of the process. So, today, I am fearful.  Thankful that my God knows that and is walking hand in hand with me….giving me strength has mine fails.

― 

When the Bottom Gives Way

Most days we walk and stand confidently on whatever surface we are on at that given time.  We tend to find ourselves sturdier on concrete than we do on an old wooden bridge, but we stand firmly knowing the bottom underneath us won’t fail.  What happens on that day where the bottom underneath us does give way?  Do we say we are never standing on that surface again, that we are never trusting that surface again….or do we figure out a way to stand back up and take “faith” in that surfaces ability to withstand our weight…our burdens…our life?

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This past Friday, my beloved RRP community lost one of its brightest stars.  The bottom gave way for many of us, most of us.  That unwelcome reminder of the disease and all of its ugliness.For those of us with pulmonary involvement, it was one of those moments you wonder if you will be able to take your next breath.  I originally considered blogging specific to the RRP event of last week, but as the days have unfolded, I have found more questions regarding faith, God, the unknown….finding joy.  Not all my own questions, but a collection of questions from those in this special community that are working earnestly today to just regain the footing…..where the bottom gave way.  Then, I see these are not questions just for this community, but questions being asked daily, moment by moment….what to do when the bottom gives way.

Personally, my footing has been shaky for a few months.  I won’t go back into the details, but losing my Mother, a major life move and then learning of the progression of my disease…well….the bottom was barely hanging by a thread.  So, now I find myself consumed by my own mortality…my own unknowns….and consumed by this compelling need to find a better way….refusing to accept the  known…it’s clear it doesn’t work.  Questions to God such as, “Show me a purpose in all of this,” “Show me how this all fits,” and “Why?”  Most of all, as many in my community have expressed, finding “Joy.”

Life can kick you straight in the gut somedays.  It will knock you off your feet and send the bottom falling into the great abyss.  So, how do you get back up?  How do you function in the period between “standing firm” to “standing back up?”  What sustains you?  Clearly, death is not an area any of us are equipped to process on our own.  Just as the prospect of death is too much for a human to bear.  It’s clear we have to have something more.  It can’t just be on our own strength.

I’ll be honest.  I was one of those back in the day that would get so incredibly angry at God for taking the life of a child…cancer, RRP, tragic accidents….whatever it was. it was really only in the past couple of years that I began to see it in a different way.  My God, my savior, he mourns just as we mourn.  He grieves with us in illness and in death.  I have to know that when the fall of man took place, that fall was all of mankind.  His perfect creation forever ruined.  That brought us disease, pain, hunger…the very things we pray to end.  A world full of sinful mankind has unleashed  a world of sin….and I may never understand how or why….but I have to trust that in some way…at some point in time…everything bad will be used for good.  I have to trust this on the days that my tears and my weak human heart and mind are upset, angry, and finding anything but joy.

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I have to trust when I am paralyzed with fear or anger or hurt…that God will hold me up when the bottom gives way.  That when I think it’s impossible to take one more step, that He moves my feet for me.  I, in turn, have to be willing to let God then use me in ways I don’t see how I am even qualified for or how I even can find the strength for.  Where I find my trust is without borders.

I have to trust these words found in Romans 8:26-28 (The Message)

Meanwhile, the moment we get tired in the waiting, God’s Spirit is right alongside helping us along. If we don’t know how or what to pray, it doesn’t matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God. That’s why we can be so sure that every detail in our lives of love for God is worked into something good.

How to you manage on those days the bottom gives way?  And how do you find the joy in the midst of such pain and sorrow?  How do you find the faith that allows you to trust what holds the bottom together?

Rare of Rare and Oceans

Moment of truth here.  I find myself questioning God’s plan sometimes.  As a Christian, I feel guilty for doing so, but I also know that I am a human and I have to believe that the God of the Universe that knows every hair on my head…well, that He understands.  He understands that sometimes, I just don’t feel joy.

Today is an update, recap, something of this past week.  I am the “rare of rare” and just a girl questioning so much, but trusting that it’s all under control.  Before I begin the recap, I do want to just comment that I had the best week in between clinic time. I was able to spend time with my wonderful aunt and my incredibly talented sister.  If you are ever in the Lake Jackson, TX area, stop by “Fresh and Fit.”  Ask for Tracy.  Awesome shop, cool smoothie options and a great salad bar.  Shopping, food (oh, so much food) and just a wonderful time of connection where you could share, laugh, ponder and just enjoy being with folks that are “your people.”  I love Houston, Texas and the area of the Highlands, Galleria and Memorial…well….just a special area.  I was quickly reminded of Texas “humidity” when I arrived on day one.  It’s just so thick.  Nothing like it.  I wish I could say I saw things that triggered childhood memories, and for a moment I thought being on Holcomb did…but I can’t be sure that wasn’t all in my head.  I ate more Tex-Mex than allowed by law, but oh, it was so good. (El Toro, Chuy’s, Pappasito’s, Escalante’s) The scale is not happy with me today, but homemade tortillas can never be passed up!  Had a special lunch at the Houston icon, Oesies.  Wonderful. Texas, you are a special place.

MD Anderson is massive.  Surrounded by Texas Childrens and other clinics and UT Medical, it is just a large medical area.  MDA, by itself, is just massive.  (Wait, I said that already. Ok, so you get it’s massive.)  Some pieces of advice if you are making a trip.  Make a dry-run of where you want to be and where you need to park.  It will help so much on the morning of your check-in.  Garages are clearly marked and signs list the clinics/buildings most closely associated with that location.  Sky-walks are your friend as well as the maps scattered all over the complex.  Elevators are lettered and the clinics are all great to let you know which elevator is best for their location.  Lost?  Confused?  Anyone working will help you.  I must have looked VERY lost one morning…as a janitor came up to me and asked if I needed help.  I thought I looked well versed in all things MDA…it seems I looked like a deer in the headlights!  Thankful for his discernment over this girl from Chicagoland.  The first floor cafe is crowded…efficient, but crowded.  Allow time for the wait at all the stations.  Starbucks coffee is served in the Aquarium. (More on fish, later.) In the sky-walks, walk where the blue lines are.  Kim may or may not have walked on the other side and received a stern correction from one of the shuttle drivers.  Blue line..just sayin’.  Take a jacket, take books, tablets, coloring books…things to keep you busy.  All the clinics have a television, but I prefer to find me a corner to just “be.”  Electrical outlets are readily available for charging devices.  The lab is busy.  It will seem very cold, but once in your room, the techs are warm and very kind.  I’ll probably have more tidbits as this goes on, but that’s my start.

Now, for my MDA week one.  There was something very surreal about being there, driving onto campus.  This is “the” place for cancer and various benign conditions.  This is the place other facilities call for advice.  They are the “gold standard” for most of the issues they treat.  This place, MDA, is often the “Hail Mary” pass for many patients.  You see patients that are just beginning, in the middle, at the end and on the flip side-remission/cured.  Every age group, several economic demographics, several ethenticities…..everyone an equal the moment they walk in the doors.  I overheard the joy as a patient learned his surgery was approved by his insurance provider.  I saw the sorrow in a family that knew that they were likely not going to get a cure.  I saw the desperation as a wife pleaded for a clinical trial for her loved one.  I saw the joy of a patient who was there for “just a check-up”….they were deemed “cured.”  I saw families from China that had traveled to Houston for care.  Unable to speak English, they were relying on a translator for their information.  I saw friendships that had developed between caregivers and patients.  Surreal.  Here I sat.  In the midst of all of this.  Northwestern, Mayo and now MDA.  “Rare of rare.”

Dr. Fossella is all that his hype says he is.  It’s just a rare day as a patient to find a doctor of his stature and knowledge that has remained humble and has such a relational approach with this patients.  For those of you out there that live with a medical condition, you know what I mean by “my book.”  It’s the book with records, scans, etc..all at your finger tips.  With the exception of handing over discs for upload, my book was never used this trip.  That has not been the case up until this point.  I began to let down my brick wall as we talked through what the week would be and who would be brought alongside to make my team.  Various tests/scans were ordered and day one was complete.

I do have to interject this little tidbit of the week.  I do not get the need for aquariums in a clinical setting.  Water, yes…calming…but those fish swimming around eyeballing me at every turn…I’m sorry, but I wanted to take a net and go around MDA and release them to the pond.  I saw this one man walk up to one of the large displays and act as if he was playing with the fish.  I am thankful he didn’t see  my perplexed face.  It’s not a dog.  It’s part of the food chain..and way down on the list.  Fish is food. (Contrary to what Finding Nemo wants you to believe.) Period.  Ok…tangent over.

The morning of the scans, I opted to attempt a walk-in at 6AM.  My original time slot began at 11AM and ended at almost 2PM (NPO) and nothing about that sounded appealing.  I knew I had a follow-up that afternoon and felt if I could get there before scheduled appointments began, everyone’s day would run smoother.  Just like Mayo, the IV entry was event free.  I am confident that when you deal with cancer patients, there is a gift acquired for “hard” veins.  I learned my veins are smaller than normal and that is part of the issue, along with scar tissue.  Radioactive glucose administered and the hour wait began.  Two scans and then I was done.  By 8:30 AM, I was walking out of nuclear medicine and over to the thoracic clinic to let them know I was finished.  Breakfast (FYI, do not order the gravy.).  Waiting.  Lunch.  Waiting.  Finally.  I know many would be upset over the long wait, but I saw people go in that were very sick and families go in that had fear written on their face…I will wait so that they can be seen first.  They need the doctor more than I do right now.  I colored, I realized “The View” is just an awful program, and I learned that folks really do watch all those afternoon TV shows.  People can sleep anywhere and the kiddos there with family just didn’t see the “sickness” around them.

I won’t bore you with all the details of RRP, pulmonary metastasis, the research or all of that.  More than ever, I now know that there are no experts in pulmonary RRP.  There is no standard of care.  RRP is rare.  Pulmonary metastasis, even more so.  If the RRP converts to squamous cell carcinoma, it simply becomes the “Rare of Rare.”  When you hear that from MDA, it’s sobering.  When it’s rare to the folks who deal with rare every single day….it is honestly hard to accept.  We don’t know for certain that the pulmonary areas have converted or if the areas in the trachea are converted.  What we do know is that the PET showed size and metabolic change.  Conversion or not, I am left with rare.  No real “rule book” in which to follow.

So, today, I sit here and honestly wonder why.  The questions that have no answers spin through my head.  Trying not to think of the logistics and expense of using MDA, but trusting that it’s where I need to be.  If I am dealing with the “rare of rare”, I want to be where they see that more often than other facilities.

Where we stand today.  I go back late September to meet with Head and Neck Surgery and Head and Neck Oncology and to have a lung biopsy.  Fairly certain we will explore the area in my trachea as well.  Just that time, that season, where you simply say, “It is what it is.”

MDA is a machine, a well oiled machine.  There for one purpose.  To cure people of cancer and treat certain benign conditions and do the research that will bring an end to cancer as we know it.  If you know that going in, you are fine.  They are focused.  From the desk to the highest level provider….one purpose.  End cancer.  It does not have the same vibe as Mayo, but it’s not Mayo.  It’s MDA.  Two different missions.  I loved the Mayo vibe, but over the past few weeks, it became more and more evident that Mayo, for me, did not present the best option.  Maybe it will down the road, but for now…..I am where the “rare” goes.

I mentioned earlier that I have been questioning God’s plan in all of this.  He moved me to Chicagoland, but I’m having to travel to Houston.  I don’t get it.  I don’t get how all of this fits together in my life.  Then, I hear, “Kim, you aren’t meant to understand. That’s My job.”

Yesterday, at church, we closed with the song that so wonderfully says what I am working towards….where I want to be in all of this.  For the first time in weeks, I let the tear fall.  It’s all so much bigger than I can handle on my own….and for this person who seeks control, letting it go is easier said than done.  So, I leave you with these words…these words that speak to me so loudly.

You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand

And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You’ve never failed and You won’t start now

So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

By: Hillsong United, “Oceans”

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.