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-Update Two

Well, we are almost two weeks post infusion #2.  Here’s the update on things…Avastin style.

Infusion #2 had drama….pure “look at me” drama.  Things started well….IV slipped in on top of the hand on the first try…praise hands.  Looking back, the next part should have been my “sign” of how things would go, but I was still focused on the one stick. Nurse had to really massage the blood out of the IV for my labs.  She had just finished up, and that familiar “hmm…I’m nauseated, I’m having cold sweats, is the room spinning” came over me-I looked at her and quietly mumbled, “you need to check my blood pressure.”  I believe it was something like 61/34.  Nurse, “I have an emergency in here.”  Legs go up, chair laid down, fluids hung….yep…I remember this….but the last time, it was after seven large trial tubes of blood…this time, it was after three very small routine lab vials.  Several minutes later, we start to see progress and nurses seem less frantic.  I, on the other-hand, have that post BP drop hangover.  Can I just nap now?  Hilarious, but old school nurse was in charge of me this AM and at some point, I still had to get to clinic.  After my vitals assured them I was not headed to the ICU for monitoring, in comes a wheel chair to take me to clinic….yes….I was that patient.

Clinic went well…labs all good….nothing that would prevent me from having next infusion, so back to infusion center.

Well, maybe the drama just prefers the infusion center, but drama showed back up.  After a rather long wait for drug to come up, it was time to hang that little bag and get the day finished.  My veins…well…they had another plan.  IV failed.  Pain when trying to flush, tender to the touch…..I was defeated. Then began the drama to find another vein that met Emory protocol.  Seems that sweet vein right in the crease of your arm is a no go for these drugs.  Thankfully, the nurse thought ahead (because that sweet spot in the crease is where the vein was going to cooperate) and inserted IV just above that crease….this allowed us to appease the protocol eyes for that day.  An hour later, and the show was done.

What did I notice this infusion?  No headache this time, but I was fatigued for two days.  It’s not a sleepy sensation, just your body is tired.  I’ve still not had any mucous plugs for about three weeks now.  Coughing is down….whether it’s related or not…unsure…but it’s down.  Cleaning my inner cannula is down as well….maybe two or three times a day.  I noticed some very slight air sneaking out around stoma site, and that was new….and I know there were some papilloma in that area…could shrinkage be allowing occasional air leak? Little things, big questions.

I head back in next week for #3, followed by first treatment scan two weeks later.  If not for the IV issues and BP drama, it’s really been a fairly easy process.  Infusion staff and my oncology team are wanting me to consider a PORT.  The order is in, and it is up to me now.  Seems like a big step given the frequency intervals of my infusions, but one I know I should at least consider.  I worry about the PORT infection risk, but I also know if I’m on this drug longterm, plus lab draws, scan contrast IV’s, and IV’s needed for an occasional procedure to keep airway open….maybe I get/will get stuck more than I realize.

That’s where we are today.

Today’s Kimism:  None of this is a choice.  No one with born with a chronic condition has made a choice to be sick, to seek healthcare (death or healthcare isn’t a choice)… this era of healthcare being this huge partisan political issue….be kind, have empathy, understand for those in the fight-it’s not a choice.

Kill the Paps-Episode One, Update

We are exactly two weeks post-first infusion.  Second is scheduled for February 21st.  As I have said, I hope to use this little blog as a “look back” as I wind around this road, and I also hope to use it as a reference point for those who may be considering this journey for themselves.  With that said, this may be a little “matter of the fact” type entry, but I do hope to find some humor along the way.

First infusion began with labs.  They are looking at platelet count, WBC count, protein in urine, and the overall picture that the labs present of my current health.  High protein levels in the urine seems to be a fairly common issue while on Avastin, and it’s an issue I hope drinking the same volume of water as Lake Erie, daily, will prevent.  Growing gills as I type.  Once labs are drawn, it’s a waiting game for those results to come back.  Everything stops until then.  No meds are ordered, IV not started….zilch.  Lee and I used this downtime to trek over for a very early lunch outside the walls of the clinic-and clinic food.

Labs back, and due to it being my first infusion, no issues were expected, but nice to still know everything is in range.  Now, to the fun part.  (Fun being used very sarcastically, in my best “Sheldon” voice.)

FOUR sticks to get an IV. FOUR.  Did I mention FOUR?  24 gauge….so we are talking very small in the IV world.  Four different infusion nurses attempted to do the impossible…thread an IV into scarred veins.  Finally-it was in and flushing…and the angels sang.  (Get a port, everyone said….well..about that.  Avastin comes with a bleeding risk, and I would have had to choose to postpone the first infusion for 28 days post port…and at the time, that seemed like a silly idea…..I was questioning that decision with great thought as each attempt failed.)

Now, meds could be ordered.  Waiting…so much of the infusion day is spent waiting.  The guardrails in place to help prevent a medical mistake are unwavering.  A constant double-check of steps, a second set of eyes along the way…

Meds up…it’s go time.  At first, (10mg Avastin) we had a runtime of 30 minutes….almost instantly, the burning sensation from my hand to my shoulder become unbearable.  Once we slowed it to the rate of one hour, there was relief and the infusion continued.  Unlike my experience with Avelumab, there were no pre-meds.  No Benadryl!!  Seriously-Benadryl and I do not get along.  I become this agitated monster, so to hear no pre-med was music to my ears.  The next hour was spent watching nurses come and go, hearing various conversations around me….sipping my water..because Lake Erie and all….and then it was done.  Maybe a fifteen minute hold time afterwards, then IV was removed and I was free to go.  Compared to the Avelumab, so far, this was a walk in the park.  As I walked out, I realized so many were still there tied to infusion pump.  Hours of infusion time for so many of those undergoing treatment for various cancers.  I had a tinge of guilt as I walked out…that I somehow had cheapened the process by being done so quickly.  From lab to walkout-five hours.  (That includes the 45 minute IV drama.)

Back to the house…almost as soon as I was leaving, I began to experience the sore throat.  Not painful, but just a sensation that wasn’t there prior to the infusion.  I was prepared for the ocean of nausea that I had experienced on Avelumab, but for the first few hours….it didn’t come.  Later that night, some mild waves came to shore, but a single dose of Zofran took it back out to sea…or should I reference Lake Erie here too?  The next AM, that’s when Avastin showed me the love…the Avastin headache.  The Avastin headache was pretty much a forty-eight hour event.  Tylenol knocked it back down, but as someone who isn’t a fan of headaches….I was uncomfortable…but compared to the NIH experience…still… much easier. An afternoon of fatigue did come in the day after the infusion, but not debilitating. Twinges of nausea came in and out over the next three days, and then everything seemed back to normal.  Week two had a few moments, but again, a single Zofran and I was back on track.  I wasn’t looking around for the nearest trash can as I was while on the Avelumab.

Now, onward to the notes that I have kept during this.

  1.  Reduction in mucous plugs.
  2. Reduction in blood in sputum.
  3. Seeing some reduction in coughing.
  4. Occasional twinge in stomach.

Infusion two is just days away….what will this next post-infusion cycle bring?

To clarify/a disclaimer-this is a road using Avastin systemically.  This is not the same as injecting papilloma sites during the OR.  Side effects and outcomes/method are not the same.

Stay tuned!!!!

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.


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.


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.






A Church Update in the “Peachy” state

Ok…..I’ve been fairly open over the past 24 months or so on my whole church journey, Jesus journey….so thought I would update via a blog post, rather than a mini-series of Facebook status updates…

I won’t rehash all of the ramblings that I have already posted…you can just scroll the blog to find that.  I’ll just start with right now, today.

Upon our move, we began visiting churches.  Andy Stanley’s Woodstock City is literally just down the road, so it made sense to visit there first……it’s a massive church and is well attended and has programs for programs for kiddos/youth.  It just wasn’t for us.  Coming from SBC life to Willow Creek life to now…it just wasn’t a fit.  We knew instantly.  We also made the trek into Passion City in Atlanta.  Gosh, it’s an incredible church.  Lou Giglio is an incredible teacher, and who wouldn’t jump up and down to the music of Passion Music.  Issue-about an hour drive and no community groups up this way.  I knew that being in a true local community was one of the things clearly shouted to me as we left Willow and made the move to Georgia.  We left incredible friends in a small group and I came to love the entire concept.  Did some online visiting of FBC Woodstock and I just can’t.  I can’t go back…for a litany of reasons.  So…insert some fairly deep research into various denominations.  Mission statements, doctrine, social statements….all of it.  This led us to visit a very small UMC church.  Super sweet church, but we both knew a good women’s ministry and a good men’s group were two things we didn’t feel led to cross off our “wish list.”  So, research some more…and we visited Hillside UMC.  We opted for the Contemporary service…well…love. The teaching, the music, the people…the size…love.  We have visited more since the first visit and this past week actually filled out the card to let the masses know we have been there.  Even visited a Sunday School.

Now….here’s some honest words for you.  I’m not sure where I got this in my head…but somewhere along the path of life, I began to believe only SBC folks were really saved-if you didn’t say “the” prayer and get dunked-one way ticket to hell for you.  Willow undid that for me….and again I say, I don’t know where that thought came from -if it was from teachings or just my messed up interpretation of all of it. I get it that Heaven will be a community of folks who chose to Follow Him…period.

If you followed me on this blog, you have followed me as I just tossed “Evangelical” into the fire pit….and you have followed my rambling, but deliberate process in all of that.  That hasn’t changed….that word has taken on meaning I just can’t process.  It’s become a political word, a weapon used against others….and I believe Jesus would flip tables all over….and I believe He is rising up leaders in the Christian faith to do just that for Him.

So, Kimmie is falling in love with a UMC.  I loved sitting and being part of “All Saints” Sunday.  I loved hearing the bell toll for each loved member who passed this year.  I loved hearing what “All Saints” Sunday meant…and I instantly had several faces come to mind who had been “Saints” in my life-pouring into me.  I’ve quickly come to appreciate the reverence of people doing the “sign of the Cross.”  I’ve come to appreciate a congregation that doesn’t expect that of every person there.  It’s not just a ritual.  I experienced my first UMC version of Communion this past weekend….I am falling quickly in love with the attitude of “for us, in us, through us.”

I’m excited to get to participate in an “Advent” series.  My Mother’s family has deep UMC roots, so it almost feels as if I am home with each of them in this journey.  So, that’s where my journey is right now.  Wanting so much more of “For us, In us, Through Us.”


Let’s Catch Up

Let’s catch up.  A lot has taken place since I last sat down to type out my little ramblings… case you didn’t know…..we moved.  Yep, we left Chicagoland and are now residents of Hotlanta metro area.  Why?  I’m so glad you asked…

Chicago.  I loved the city of Chicago.  I loved her diversity, her determination, her architecture, her food, her people…..just loved it.  I loved our church….Willow Creek is just awesome.  We loved our friends.  We had met some of the most incredible people that I certainly hope to stay in contact with over the years to come.  I was shown how to do Jesus in a way that just healed my soul.

“Sounds awesome, so why move?”  Glad you asked.

  1.  Winters, for me, were brutal.  To walk outside in January and my lungs just cry in pain…I just couldn’t do it.
  2. Lee had an awesome opportunity come up that allowed him to narrow his career focus into more of the things he just loves to do.  Also allowed him to lose the tether to the work phone on the weekends.  LOVE!!!
  3. No more travel for my medical care…Emory has a top notch team for my disease.
  4. Family….we are now just over three hours to his parents and my Dad and sister.
  5. Cost of living.  I think that one needs no further explanation.
  6. BEACH BEACH BEACH….four hours from Atlantic, five hours to Gulf Coast…..

Those are some of the reasons….but mostly because it was time to  move on.  This already feels like home…like the home you want to be at when that sun sets on a life well lived.

What am I loving so far about Hotlanta?  Gosh, southern food.  Southern weather.  Folks dressing up for dinner out on the weekend….I may have to dust off my heels again….and the ability to make a quick trip to see family and not need to mark off three or four days for that trip.  Hills and mountains….won’t lie…flat land and I just don’t get along.  I need to see those hills and mountains.  Oh, and Zombies….seriously…..I’m in Zombieland!

Now, to find a church…..funny….three years ago I would have just sat down in the closest FBC church and called it a day…but Chicago, Willow Creek changed me….God forced that change…and now I want that church that is diverse, refugee focused, non-political, socially aware, where every person is valued for where they are right now-not where folks want them to be.  If you can’t value a person for where they are today, why would they ever want to improve/polish who they are for the future?  A church where people are truly seen….that the outreach of the church is so intentional, you see the hands and feet of Jesus daily in the church…not just on event days.  So, all that to say….we haven’t found a church yet.  We LOVE Passion City, but it’s honestly too far to get involved with during the week.  Atlanta traffic is legit.  So, we keep searching….trusting we will know when we visit “Our Church.”

So, that’s life right now…..we moved.  🙂

28 days…A Post of “Favorite Things”

It’s official.  We finally have the “confirmed” dates for the movers to arrive and pack and load and deliver.  Twenty-eight days until a moving company pulls up armed with tape, boxes, paper, bubble wrap…..Lee heads down in a few days, but we aren’t closing up Chicago until the end of the month.  (PS-This also means it’s twenty days until our second year graduate student is here for five days until he heads back for that final push towards the pink hood!)

Yes, I’m starting to get excited about being so close to family, doctors, the beach, the mountains, lower COL,  and also being able to get Newks anytime I want it….but as I have said…it’s bittersweet.

So, today, a post of “Favorite Things” so that I will always be able to look back and recall the things I did fall in love with during our Chicagoland adventure.

  1.  Lake Michigan  It’s truly magnificent.  Chicago side is great, in that you have the center of what makes Chicago who she is, right there.  Yet, I have to say…the Michigan side, well, it’s breathtaking.  The sound that reminds you of the waves crashing ashore at any beach in America….the blue tint to the water….the wind coming off of the lake reminding you of the trade winds at a “ocean” beach….when I needed moments of refreshment, Lake Michigan often was what the doctor ordered.
  2. Chicago Mix Popcorn  Ok, y’all.  This is some good stuff.  Garrett’s is the name everyone knows, but I grew to love Kernel’s the most.  Caramel goodness mixed with cheese goodness…..yummy.  I learned Atlanta has a Garrett’s.  Sometimes, you just need popcorn.
  3. Willow Creek Community Church  I cannot even begin to put into words what this church, teachings under Bill Hybel and Steve Carter, the mission, the awe of the Care Center..well…what they have done for this messed up heart of mine.  I think in ten years I will look back at the time at WC and know that is likely the biggest reason God moved us here in the first place…it was never the reason we thought.  This church does Jesus well….actually….it does Jesus exceedingly well.  Things I will take with me from WC: Baptism Day, “Dear Me,” “Love Everyone, Always,” and a congregation that resembled the world around me.  I’m forever changed because of my time at Willow Creek.
  4. Going along with number three, it has to be the zany, mismatched-yet perfectly matched, group that we have as our small group.  I have seen Christianity and Jesus modeled in ways that have forever changed me.  I look back to my little self when they first took us in and wonder why in the world they invited me….but..I’m so glad they did.  Lee and I have grown to love this group and will miss being part of the gatherings…although, I have suggested we do Skype small groups.
  5. Chicago Summer  Summer in Chicago is short, but magical.  Everything around you is in full bloom, showing off daily.  I’ll never get over 85 degrees being “a scorcher of a day.”
  6. Downtown Naperville
  7. Downtown Geneva
  8. The way Chicago showed me the melting pot of America, working together.
  9. Mariano’s
  10. Finally, because I’m pulling a Letterman and stopping at a Top Ten….the people.  Chicagoland, you are an area full of some of the kindest people one could ever hope to meet.  You are a shining star in our Nation..even if it’s not always reported.  You do people well….to the people of Lee’s company here and the wives that reached out to me along the way….you are the best of the best.

So, there it is.  My ten favorite things about Chicagoland.  This is just a “see you later” as the paths will cross again….open doors remain all around me.

Thanks for letting this “Bless Her Heart” girl find her way….guiding her along her broken glass path… are forever loved.  (Even though you did welcome us week one with a blizzard.)


My Help

I’ve mentioned how much we have come to love Willow Creek. This church, and the friendships developed in our current town…have changed me…they have enhanced, strengthened and encouraged…along with those ties I have kept tightly tied in Arkansas.

This song was performed this past weekend. It sums up this season of health and all that it has brought, this season of change….it is a story of how I put one foot in front of the other when my feet feel cemented into the ground. It’s how this girl, who is as messed up and messy as they come…finds the courage to face tomorrow.

Peaches, Pie, and Bittersweet Tea


Well, it’s Facebook official, so I guess that means it’s really going to happen.  Lee and Kim are off to Atlanta-the land of peaches and pie and rolling hills and new adventures.

It comes with a big gulp of bittersweet tea…..we truly have had some incredible adventures here in Chicagoland….and the folks in our circle…well…they are some of the best of the best.  Our time at Willow Creek has been amazing. I will miss these two things the most-WC and the group that has surrounded us in this journey.  Who knows, I may even be typing a year from now that I miss Chicago winter…..nah….I won’t.  HA!

Right now, it’s the crazy stress that comes with any relocation.  Details, timing, scheduling, etc….so I may not look like I’m spilling over with joy about it all….but I know by November, when things are all settled, I will embrace the move….and the positives it will bring.

A. No more traveling for my healthcare.  Emory has a great group.

B. Lee will be closer to his parents than he has been in twenty-three years.

C. I’ll be a mere 3 1/2 hours away from my sister and my Dad.

D.  Savannah, GA is 3 1/2 hours away.

E.  30A is just over 5 hours away!!!!!!!!!!!!!!

F.  I can walk to pie.

G.  No more snow boots.

H.  Blue Bell Ice Cream

I.  Incredible hiking is just a short drive away….ok….so this is a positive for when Josh visits….y’all know I am not hiking…frogs, frogs, frogs.

J.  Dillards and Nordstroms in the same mall.

K.  Lee in what he calls “dream job.”

I think twenty years from now, the one thing I will want to remember most about our time in Chicago is this….the love for Jesus and for people that I have experienced by those living in Chicagoland has been eye-opening.  I will cherish these lessons forever.

So, onward.  Lee heads out in two weeks, while I stay here to close out this season of our journey.  I’ll be eating pie soon after Labor Day.

Sixteen More Days…

I’m a five year old. That’s my new age, and I am going to stick to it. This whole grown-up gig is just not what I imagined it would be all those years ago. Technically, with an airway of a five year old, it seems a very plausible argument. One is the age of their youngest anatomical feature. Fact check that…I’m certain it’s correct.

I’ve finally processed the whole “non-responder” official statement by the NIH. It still feels like salt in a wound, but I’m walking forward again and that’s progress. The good news is that there are trial participants that are responding, and I am able to cheer that just as loudly as I would have my own response…a response that was meant to be a yes, but it did not get the invitation in the mail apparently. Which, leads me to today’s posting…an update…for those of you who have followed this journey.

Sixteen days from today, I go back into the OR. My trachea, it seems, had a little conference with the RRP over the past few months, and they decided that I needed some miracle grow tossed into my daily life. A trip to Mayo, a couple of weeks ago, confirmed what my lack of activity tolerance had already told me….I was compromised-not by the Russians, but by papilloma-little creatures that remind me of what cauliflower probably tastes like-hint, I have never tried cauliflower-it remind me of white brain matter. In an effort to increase my level of care, we decided to bring a second surgeon on board with my team. So, matching up schedules, and my insistence that I be able to attend my niece’s graduation and welcome my Josh home for bit…May 31st is the date and we will be on an every six week rotation to the OR for the foreseeable future. This means….I’m lazy by necessity, I have far too much time to read up on health policy, governmental affairs, changes in religion, etc….I should consider taking up gossip magazines…far less stressful. Cleaning the house is a multi-day task…as when you have the airway of a five year old currently, it’s dust or sit and breathe. I’ve tried ignoring that innate desire to breathe….it wins…just so you know…your lungs + brain will override just about all that you desire to do. The news in pulmonary continues to be “concerning,” but we are going to attack it a different way after surgery….and I have every confidence that I have given my pulmonary enough lectures on how it’s really not fitting into my whole “empty nester” plans…that I can see it listening and doing what the next drug tells it to do.

Avelumab and I did not match….so the next drug on the horizon is systemic Avastin. If we see results after four doses, then we will work towards a maintenance dose cycle. First hurdle is getting off-label usage approved by insurance, and if that is denied, then approval by manufacturer for compassionate care. If Avastin doesn’t play well with the papilloma, then I will have to consider at least a wedge resection to take out the two that are not behaving.  hqdefault

So, there you have it…the health update. Such as it is, it’s my current sitting place. As a new five year old, it works well. I can color without any worries that I am engaging in an activity that doesn’t match my birth certificate age. I can choose to eat Fruit-Loops with my fingers if I desire, and flavor-blasted Goldfish are an acceptable food group now. Nap-times are considered mandatory, but given I cannot sleep in the daytime, I have chosen to just be a temperamental five year old in the afternoon….so far I have not injured anyone..but there are still sixteen days to go!

In what can only be considered “divine appointment” of timing, I have been in a Bible study of 2nd Timothy this past semester. I will blog on it more later, but this has stood out to me for weeks now-

“You have a provider that wants you to be more than a survivor.” Beth Moore

I’m still very uncertain as to what that sentence really means for me right now, but I know that sentence and the fact that God didn’t give me my miracle in Avelumab, that maybe He is choosing to make something about my life the miracle..well…it’s moved me forward.

Enjoy breathing….enjoy talking…for so many people near and dear to me, and myself, those are luxuries at times. Make those breaths and words count!

Peace out…and PS-Intelligentsia Coffee….you need some in your life.