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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Jesus, Labels, and Evaluation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

Things We Say…2

As I continue to search my brain-bank for things that have been said for so long, that I may have just come to assume they were correct…Biblically, historically….I’m learning that when some of these are challenged outside the confines of my little nest….the pushback can be intense.  I get it.  It’s hard to accept something you took as truth for so long as not truth…or something that was incorrectly attributed to Christ or even a famous writer/theologian.  Yet, isn’t the whole purpose of this “walk” to check yourself at the door and verify truths….an ongoing process?  I hope so, if not…then Christianity is nothing more than being a seed in the ground never watered….that’s death.  The seed would never grow.

“You give a poor man a fish and you feed him for a day. You teach him to fish and you give him an occupation that will feed him for a lifetime.” 

How many times have you heard this?  I hear it quoted a lot when people are having conversations as to the perils of social welfare in America. It’s not in the Bible….Jesus never said anything of this sort. It’s a Chinese Proverb.  While the premise is nobel, it’s not scriptural.

This too shall pass.  

Not in the Bible.  It’s origin is likely from a fable by Persian Sufi poets.  The scripture that likely most follows this common Christian saying is from 2 Corinthians 4:17-18:

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

Biblically, we are given the hope of what’s not seen, that our earthly troubles are temporary.  (PS-this is a very difficult truth to handle in the middle of the storm-show grace.)

As I sit here and look at the words in black and white, I am once again reminded of how hurtful these “taken as truth”, “Non-Biblical” remarks must feel to those hearing them.  As a daughter who has lost her Mom, “this too shall pass” seems especially hurtful.  It has been almost three years and it hasn’t passed…just become part of my normal.

Christ multiplied the fish and the bread to feed the masses.  He didn’t shout out to the masses-go learn to fish and you will be fed.  No, He fed the masses.  He saw those in need and He met that need.  I understand the premise behind the proverb, but it’s just not in the Bible….

That’s it for today….just two more.  As you read this, I do ask one thing of you.  If your fingers are tapping the keyboard wanting to comment about the woes of social welfare in America, please don’t.  That’s a politically charged worm hole that I don’t want this to head down.

Truth’s that are true:  Jesus loves you.  Period.  All of you. Good, bad, everything.  He doesn’t love you because of how you vote, how popular you are, how many friends you have on Facebook….he loves you for the imperfect human that you are.

Peace out folks….and enjoy this “National Coffee Day.”