Let’s Catch Up

Let’s catch up.  A lot has taken place since I last sat down to type out my little ramblings…..in 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…..you 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.

https://willowcreek.tv/sermons/south-barrington/2017/07/cultivate-patience/#holy-spirit-medley

Peaches, Pie, and Bittersweet Tea

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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.

Recurrent Respiratory Papillomatosis Foundation…Social Media Roll-Out

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@RRPFORG, #RRPFORG, #RRP

https://www.facebook.com/RRPFORG/?view_public_for=129609430915128

It’s official.  The RRPF is rolling out on social media.  There has been a support group page on Facebook for a good while now, but an official social media presence was not widely available.  We now have a one stop page where you can donate to the RRPF, setup a fundraiser that is shareable on all of your social media platforms, and access the latest information from RRPF and a quick link to the RRPF website.  Unlike the support pages that are closed groups, the RRPF Facebook Organization Page is shareable!  That means we are counting on you to share it with your social media.  Awareness begins on the ground floor, and we, the members of the community are the ground floor!

In the coming days, look for a roll-out of “Get To Know ___” series.  We will highlight RRP community members, board members, active researchers, etc…

Another plus of the RRPF Organization Page is that we have privacy set so that those acting as administrators do have to approve posts before they go up.  Since it is a public page, we wanted to be certain we kept any potential issues off the page!

So, as you sit sipping your coffee today, won’t you join us and help broaden our following?  Share the @RRPFORG page, follow @RRPFORG on Twitter, follow @RRPFORG on Instagram….

Consider starting a fundraiser. RRPF is a research focused organization and the funds received are going directly back to the RRP community in research support.  There are no paid members within the RRPF, it’s 100% volunteer supported.

Another exciting development that is in the early stages of rolling out is a pulmonary exclusive arm of the RRPF.  A group charged with one purpose-pulmonary RRP.  We all are well aware of the  mortality associated with pulmonary RRP, and many believe the ultimate cure for RRP will come from pulmonary research!  This team will function under the RRPF.

It’s an exciting time for the RRPF and we are excited that you, the community, friends, family, now have a shareable platform to bring awareness, gather information, and help with the fundraising goals of the organization!

While We Breathe, We Hope!!!

Masks

This has been a season of sitting….and as I take two stops forward, three steps back on most days, the word “mask” keeps coming to my mind….

Webster’s Dictionary has this as a definition of “mask”: something that serves to conceal or disguise.

My time in the trial taught me lessons that I still don’t know how to put into words, but more importantly, my complete and utter disappointment in my outcome…well…it revealed my “mask.”  In some ways, the “mask” was already showing several cracks and thin spots, but it wasn’t until I was faced with something I could not process, that I was forced to take it off just to breathe.

Today’s ramblings, are about my mask…what it was hiding (some of which I haven’t even realized yet) and about the masks we all wear…for different reasons….bear with me, as I am confident we will go to Lucy’s house and back a few times….taking various detours.  Those “squirrel” moments.

I’ve been trying to remember when the mask went on…..did it go on for my disease, did it go on for things I experienced growing up, did it go on as a young Christian, did it go on as an older Christian…..were/are there multiple masks that I’ve used over the years?  Why does one feel it necessary to wear a mask?  Is authenticity something we all “say” we want one another to do, but in reality we don’t?  Are masks to protect ourselves, those around us, or to hide those human insecurities and imperfections that we worry will cause those around us to leave or think differently of us?  Maybe, they are all of the above.

The earliest I can remember possibly using a mask, had to be as a teenager.  I was awkward, acutely aware of what I perceived to be a status of “less than,” craving to belong, wanting to be normal, like my sister(s).  Like most teens, I learned to pretend…a lot.  That age where I would guess, most “first masks” are used. I became who I thought others wanted me to be…in the process losing who i was and missing out on the journey I was meant to be on….I used that mask to take a “forced road.” Like most actors, over time, the longer you play the part, the harder it is to remove the mask.  So, at some point, that mask was stuck on-stupid decisions allowed to be made by that mask I let control me.

I see my next mask mirrored in so many social media posts on Facebook.  The mask of the “perfect mom.”  Can we just get a national amendment passed to simply say, “Moms, your job is tough.  Some days, it will stink worse than a dead skunk.  Some days, you will want to run, as fast as a sprinter. to get away from all of it.  There will be nights you watch the clock tick minutes away…as you await bedtime.  There will be days  you wonder how much therapy your child will need as an adult due to the damage, you are certain, you are inflicting on them as you count your failures for the day.  But, Mom, take off the mask…be real.  There are no perfect birthday parties, no perfect methods, no perfect Sunday mornings as you shout for anyone to just be dressed..just one of you…and there are no trophies at the end of the day for the “Miss Mom Who Faked It The Best Today.”  The only trophy you will ever get is that kiss on the cheek…or that “I Love You” when you least expect it from the child you were certain was demon possessed just an hour ago.”

Can I get an “Amen” on that amendment.  I scroll down my feed and I see the masks.  I can even look back at my own during that season.  I was scared.  I was uncertain.  I was winging it most days.  I failed more times than I can count….and I’m certain God shook His head at me most days in that, “Hmm….maybe Kim wasn’t the best idea for this experiment.”  The mask hid all of that from the outside world….as far as anyone wanted to know….I was a pro.  (My kiddos will tell you loudly…I was not.)  One big hot mess.  Somehow, well, I know how…simply by God’s grace did I not drop one, oh wait…I did that…oops…sorry Meg….ok…somehow, by God’s grace that I did not forget to pick one up after school…oops, I did that too…sorry Josh…naps.  See…my mask to appear all together was hiding nothing more than a mom dancing on hot coals just trying to get to the other side most days.  Getting kiddos from birth to high school graduation….it’s hard.  I wish someone had pulled me aside during that season and ripped my mask off….but I think we were probably all wearing a mask of some sort….had social media been a thing back then..would Moms today have a record to look back on that was real, or would they see the same masks they try to wear today?  That mask that made you believe that if your kiddo wasn’t the smartest, or the nicest, or in a certain class…you were a failure-oh my goodness if they happen to bite a kiddo at school…..how could you be such a terrible parent? Satan loves to dance on Mom’s…..loves to make that mask feel like a weight on our shoulders.  I was a willing participant…I let him hold it on….and I type today wondering how many around me were doing the same thing.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.  2 Corinthians 12:9-10

Then came the mask of “College Mom.”  Who knew that such a thing even existed?  Let me say this, and hear me loudly…..letting your kiddos go off to college, even if just down the road, is the hardest thing for a Mom to do that relates to the raising of her kiddo.  You pray that seeds are planted…but at the end of the day, it’s mask on time…because you must appear to have it together in this season.  With announcement, you tell the world that your kiddo is off to college…social media is a thing now.  There is no “empty nester” support group….and there’s no time to even appear less than stoic.  Your mask must present the impression that you have prepared your child for this moment in time….they will be successful…they will make perfect choices…and you will wear their success like a well earned medal.  I’m here to tell you..this mask lies.  Kiddos aren’t perfect.  Sometimes, plans made by them and the family don’t go as expected.  This mask tells you that you failed.  You somehow did something wrong along the way that gave way to outcome A or B or C.  This is the mask that I have wanted to burn a thousand times over.  What good are any of the struggles as a Mom through this season, if we hide them from the other Moms who could so desperately use simply that sign of, “me too.”  The job of Mom doesn’t end the day they leave for college, and our mask shouldn’t be one that presents this perfect facade to the outside world.  Our pain in this season of the empty bedroom…it should be shared. When something goes not as planned, we shouldn’t have these masks on that prevent others Mom’s from realizing, “me too.”  Yet…we do..we wear those masks…and I wore mine proudly.  Like every mask before it, it was the lies Satan had me believing about myself…and about where I was in life.

As I journey, seeing that all along, there were two masks carried that never went away, never got put away.  The mask of my illness and what I showed to the world….and the mask of my faith and what that was to me-not the one I knew needed to be presented. As I open this jar, one common theme is in every single mask-the lies that Satan told me….the lies that I let myself believe as truth.  I wanted to get that out there before I talked about the two heaviest masks of all….

The mask I wore from age five….still wear in many ways today…the mask of an illness..the mask of a voice I didn’t ask for, surgeries that I have grown so weary from…the mask of regret and anger towards that illness…the mask of grief that this illness brings on so many days….the mask that wants to have me sit and doubt that I am prepared for this….that somehow, in a way that I will likely never understand…this illness will be used.  The mask that told me it wasn’t ok to be angry or question God about all of it.  That doing so, somehow made me not have faith. (Goodness, Christ called out to God on the cross!!!) That to just sit and let God know I was tired of all of it, was somehow a reflection on my Christianity.  Oh, this mask is heavy….and I like to think I’ve taken it off, but it’s still there….I’ve just decided to take some of its power away.  The mask of my illness has robbed me of plans that I had made for myself, but it hasn’t robbed me of who I am.  I’m taking that power away from my mask.  In some ways, this mask has become like Jim Carrey’s character in “The Mask.”   With the mask of my illness on, I can pretend the life behind it doesn’t exist.  I can be that person who seems to be handing it with grace.  The crushing defeat of this past month has made that pretending too great of a weight to carry…the mask of my illness has to become lighter if I am to move forward and not get stuck in my sitting. So, while I know the mask is still on, I am taking control of the power it has, but recognizing that times will come where I have to stop and sit in it. Those days, where in order to move forward, I will wear the mask…but now with a knowledge of what I’ve let it control…and my freedom in deciding if it gets that power on any given day, any given moment.

And that leads me to the mask that I am working to take off that reveals who I am as a Christian…what I believe….what I have found to be man-made….the mask that weighs so heavily somedays…that I wonder if I’ll ever have it fully removed.  I have exposed some of this mask prior to today via a few other blog posts….a mask that was/is so powerful, it shaped much of what I thought was true for so long…..truths I am working through at this season….breaking apart what is true, what isn’t true, what’s Biblical, what’s not.  Realizing how that mask, that mask that had me believing certain actions where required in order to be “a good Christian”…that I used that in decisions that caused hurt….to myself…to others around me.  And that, my friend, is authenticity.  I allowed my faith, the mask of it, to be so legalistic when it suited me…that it caused pain, hurt.  God ripped me from the pit of where this mask had taken me.  Today, I can say that mask is cracked…pieces of it missing….but the journey of trying to remove this mask has been hard.  It’s easier to just sit where you are, than to be plucked from the comfort of your little mask and forced to take a jackhammer to that mask to find what’s on the other side.

I don’t write this today for pity or any of those human desires….I write to share my masks…and where I am in the journey of the masks that I know about….so that maybe someone out there will maybe just be, “Me Too.”

There will be more on all of this….but just exposing this much has made my head feel lighter….bringing those masks out of the darkness into the light…..

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Avelumab…That’s A Wrap

“How can one capture genes that behave like ghosts,” Weinberg wrote, “influencing cells from behind some dark curtain?”
― Siddhartha MukherjeeThe Emperor of All Maladies: A Biography of Cancer

Yesterday marked the official end of the Avelumab trial for this girl.  A day trip over to DC to the NIH in Bethesda for final scans and labs.  Cherry Blossom trees were in bloom everywhere..signaling that winter was over and life was renewing.  I suppose, in a way, yesterday was this season ending for me and a new season starting today…

This entire journey started 29 months ago…..in a way it seems longer than that, then in other ways, it seems like it was just yesterday I  learned of my pulmonary involvement, all thanks to an incidental CT ordered because I was having unrelated chest pains.  I suppose if I start with that date, then it’s been 41 months ago…..I had never really stopped before now to realize I’ve been on this journey even longer than I had been telling myself.  It really started that night in the ER where the CT was done….or I could even go back to 2011 when a CT was done and the results were never relayed to me due to a change in how a hospital identified patients.  The lesions were new then and half the size….likely would have been the same journey, just more years of scans added in.  So really, six years of my life, two of which, I didn’t have any knowledge of the lesions…..all leading me to the trial…and now leading me into this new season.  Reality is….this has been my journey for 45 years…and now I’m looking at different roads to travel for RRP and pulmonary RRP…..this road is over.

When I started the journey, where I was on the ground working towards a treatment plan for pulmonary RRP, something I did the first trip without really having any purpose behind it….I randomly took a picture of my feet/shoes.  Whether it was my intent or not, that picture became a “thing” I did in this journey.  I’ve compiled some of those in a collage…and I can sit here today and remember the story of  each shoe.  The halls it walked, the doctors that it had a front seat to….the adventures I made along the way….the friends I laughed over dinner with, the family I got to see….the knowledge I gained….the joys and the sorrows along the way.  (PS-notice the lack of Chicago level winter shoes….one would think I carefully planned events so that I could take advantage of “cuter” shoes.)

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Today, I’m at a new road…actually, three roads…..once again looking at the forks in the road, uncertain as to which one to take….another Robert Frost moment.

  • Systemic Avastin – real risks….very real risks.
  • Wedge resection then systemic Avastin – see above.
  • Monitoring with continuation of standard debulking….something that is unable to keep up with my tracheal disease at this time.  Risking conversion of the pulmonary as well as risking tracheal lesions from blocking my airway, even with a trach.
  • Drain the bank and escape to a deserted island in the south Pacific and write a book and be Jack Sparrow….

Option four looks the most appealing.

 

 

An update on the “sitting” …. I’m still sitting, but in a different way. Sitting to listen more than sitting to talk.  Progress.

Now what…

(Remember..I told you entries right now are for me to be able to look back on the journey….)

This will be short….today would have been the day I would have left for week two, cycle two of the trial.  Instead, I am here…preparing to head out for a single day of tests and clinic next week to finalize my exit.

October 2014…..that’s when this entire journey of my pulmonary RRP began….the day I was sent home from the hospital without a biopsy because they felt I could get better care in Chicago. That day started my mission to seek out the “right” plan for my pulmonary RRP.  From Chicago to Mayo, to MD Anderson, to NIH….from hours spent researching the few papers I could find on pulmonary RRP….the countless needles and tests to accurately monitor the lesions and my overall health while still battling the tracheal and laryngeal lesions….the trial, where I decided to forever alter my immune system for a chance at a cure.  The entire process has been a huge part of my life since October 2014…that now that the door I worked so hard to find is closing….I’m at a loss.  Now what?

Things that have just stung like salt poured into a wound have been those words people say….when silence would be much better…just a simple text of “thinking of you” is easier to handle than those of “God is in control.”

So, today, I sit with “now what?”  Finding that I’m not really sure what to do now…they say grief has five stages.  Denial, anger, bargaining, depression and acceptance.  What they don’t tell you is that you can have more than one stage at a time…..and that’s how “now what” feels….

I am oddly still left with some of the side effects….which I expect to lessen over the next few weeks…so I do have the reminder that I did take the leap…I jumped with nothing but blind faith….and even though I sit here today…I would do it all over again…for that chance…that hope…of a cure.

 

Avelumab, Evaluation Week….

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This past week has been incredibly difficult.  Difficult in a way that I don’t even know how to process with authenticity.  To be honest, I am mad at God.  I still trust Him…but I’m mad.  Forty-five years of RRP…I’m tired…tired of this broken body that I neither asked for or caused.  I entered the trial with such hope.  The idea that we may have a pathway to a cure….or even just a nonsurgical option….my mind raced ahead imagining a life post-RRP.  I didn’t allow myself to really consider being a non-responder.  I did all the things I was always told to do…I prayed, I trusted…I may have even softly begged…..and at the end of the day….I was the first non-responder.  Now, I sit trying to understand the why of it all….and I realize I’m just mad.  Does that make me less of a Christian?  Does that mean I don’t really trust God….or does it simply mean that I am human living in this world that can often seem so cruel….even to those who have the strongest of faith?

I’ve learned these past few days how cruel some of the “right things” Christians say can be….I recall learning some of these after my Mom died…but they seemed easier to hear then…maybe because I knew for certain she was now without pain….she was free from the cancer that had entered into her life ten years prior to her going “home.”  She was in peace…and I could wrap my head around that and be ok with all of the grieving process….but this….now…I honestly am struggling to understand the why of it all.

So, here’s my recap of my first Avelumab evaluation..three infusions down..two OR procedures down….and it all comes down to a CT scan.

I flew into DC on Monday so that I could avoid that 5:45 AM flight on Tuesday….Tuesday began with labs and my being able to follow up on Mr. Wesley’s house story….such a kind man.  His family came here from India…and his heart is so tender, yet so funny.  Seems they put in the contract on the house of his dreams…and then his wife became upset with him and cancelled the contract…then went to India for two weeks to visit family.  Ok….you just have to imagine this story…it is and was hilarious.  He described every detail of the house to me on Tuesday morning…he was in love with this house, but he knew…it was no longer his house to own.  I’ll come back to Mr. Wesley in a bit.  Soon, it was time to head to the CT department.  When my name was called and I entered the CT room, I was caught off guard by the weight of the test and everything this scan would stand for….a machine that is incapable of empathy…untruth…what it would tell the radiologist reading my results for the trial would be 100% without human error.  The results would be whatever they were and no one could argue against the results. Thankfully, I had made dinner plans that allowed me to escape the over-thinking nature I hold….a couple of hours where I didn’t ponder the “what if, the results…”

My fellow RRP friend and I met in person for the first time for dinner on Tuesday evening.  Irish food in Chinatown.  Such a neat place for dinner and you honestly felt as if you had stepped into an Irish pub in Ireland.  Fellow RRP folks…well..we are one big family.  The safe space of not having to explain our voice, our life…knowing the person across the table from you gets it…people you have never met in person, but you would do anything for them…because, well, our community is small, but our  hearts are large.  Back to the red line I went…and whether I wanted it to or not…Wednesday was coming.

Lee flew in to DC on Wednesday morning.  The timing worked out so that he was entering the NIH just shortly before the clinic appointment where I would be given results…where I would learn if I went on to cycle 2, or if my time in the trial was coming to an end.  Doctors have terrible poker faces…as do the trial nurses and trial PA’s…no one even had to say a word.  It was written across their face.  The defeat and disappointment we all felt…so real. The idea that I would not respond at all…didn’t even enter my mind before clinic.  I was unprepared for that result…and maybe in an odd way that was good…would being a partial responder and removed from trial be harder to take in?  We chatted about what comes next (exit CT, labs, clinic on 3/28)…and what is being learned from my blood and tissue samples…in that moment I didn’t get emotional.  I was stoic…almost having this overwhelming desire to encourage the team….my emotions would wait…clinic was over…back to the floor I went and with a quick check-out for the afternoon, Lee and I were on pass.  DC in four hours would be the goal…Lee’s first trip into DC.

DC was a very welcome escape from all of it.  Just the outdoor air and walking from the Capital to the Lincoln Memorial and points in-between.  Walking through the WW2 Memorial, the Korean Memorial, the Vietnam Memorial….seeing quotes from those before my time here on earth…words of wisdom we need today in this sea of chaos swirling around us.  Albert Einstein and I had a little chat about RRP and I’ve enlisted him to help find a cure for all of the community…he seemed receptive to the idea.  Soon, my body said it was tired and back to the red line we went…and with a stop at Bethesda…dinner at Passion Fish.  We grabbed the floor staff/nurses a box of cupcakes from Georgetown Cupcakes and back to the NIH we went.  Surgery time would come soon on Thursday…cupcakes delivered, thank you notes delivered to staff/nurses and to my Mr. Wesley.

Due to my CT results, I would receive no more infusions and my Thursday would be a trip to the OR for a normal RRP debulking procedure.  Still stoic…still trying to be Ms. Positive Spin…I knew it was all a lie….but mask on…I pushed through.  Surgery came and went….the plus side of surgery with no infusion to follow was that I could take the steroid push in the OR to help me come out of anesthesia quicker.  Instead of sleeping until 6 in the evening, I was awake and functioning by 2:30pm.  Oh, and no research labs since I was on the door out….now back to Mr. Wesley…at some point in the afternoon, I decided I wanted to walk down for better food.  I did not know on the basement level was better food than the room service or second floor.  When I returned to my room, there was a note from Mr. Wesley.  He left me a note to look at his house…the house he was not going to be getting…something so simple that meant so much to him, he wanted to share.  That note is going in my hatbox.  It’s a treasure.

Friday was fairly boring with the exception of my love of Zofran….fewer team members came in on Friday….and as nurses learned of my response, we all worked through that.  I think that’s what makes the NIH so special…you are part of something bigger than yourself whether as a trial participant or NIH employee.  Your win is their win…your loss is their loss.  Lee and I felt prompted to shower the unit with a bit more love, so we sent a bouquet of flowers.  Nurses and the staff on floors are truly the unsung heroes of medicine.  They deal with us when we are often at our worst…and often without a single thank-you.  When I would walk by the flowers, later in the day, I would smile knowing those flowers represented the level of care I was part of.

Saturday was everyone on airplanes back to Chicagoland.  Josh coming in for break on a flight, me on a flight and Lee landing at Midway…a quick trip to Raising Cane’s and it was indoors under a blanket…where Zofran and I continued our relationship…still ongoing today….

So, that’s the recap of the week…now back to the realness and my thoughts now.

I learned something over the weekend from Lee…it seems in pre-op…I broke down.  I broke down in front of the entire team. I have no memory of this…but I am told I was talking about the journey and how I ended up where I had so prayed not to end up.  I’ve tried to see the perspective of this…that my coming home was not the same as someone being removed from trial that had stage IV cancer…where their coming home was “going home to die.”  I was coming home to the same life I had before entering the trial.  Yes, the drug has forever altered my immune system and we don’t know if I could possibly have a delayed response….there’s just so much unknown in the world of cancer immunotherapy. I can’t let my head go there…to that possibility…because the heartache a second time…I’m just not that strong.  I’m really not strong at all…I just have learned over the course of a lifetime how to wear the mask for those around me…..but if I am being honest…I envy most everyone around me..the ease at which they talk…the ease at which they can live life…life without counting down days until the next OR procedure…life always wondering if this scan is the one that shows conversion to cancer…life without having to wonder what changes are coming to healthcare in the US….life in a world where so often, those with visible signs of being “less than perfect” are in many ways sitting on the back of the bus.

As I said in the blog before this….nothing about this is well with my soul…and I don’t know when it will be.  I’m human and want to know why I have this disease and why I didn’t respond…when others have.  I don’t want to hear how it’s all part of God’s plan…the God I love….He can most certainly use everything to His good…but I don’t believe in a God that brings sickness to his beloved.  Sickness is from this fallen, broken world…but, I’m mad today….when I stop to think of all of it…the tears just roll down my cheek…so, I am working minute by minute to push it all back down….

Do I regret the trial?  No.  I would honestly do it all over again without hesitation.  It was the best shot I have had in my lifetime….and the things being learned in this trial….they could lead towards the cure I so crave…even though I know now that a cure doesn’t mean life without a trach.  For those responding, I am so happy for them.  That’s where I can go back to family….family that cheers one another on…but also sits in the grief of the disease when necessary…which is what I am doing now…something I don’t recall every doing before…letting myself sit in the grief of my disease and it’s impact on my life….maybe allowing myself this process will help me not grieve this disease again….where I decide to live a life without the mask.

One day, hopefully soon, I can be like Snoopy in the pic below….just not today….one day.

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