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…..

Unknown

Avelumab, Evaluation Week….

images-1

 

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.

images

 

 

Avelumab….Cycle One….Infusion Three……

il_570xn-466743386_4p5v

 

“So, let go my soul and trust in him…the waves and wind still know his name…It is well, with my soul.”  “Whatever my lot, it has taught me to say, it is well with my soul.”

I’m going to let what’s above hang there for a bit and come back to it towards the end of today’s entry.  I finished Cycle One of the Avelumab trial for RRP this past Friday.  My third infusion is now in my past.  I’ll chronicle this trip and then take this entry much further than the other two…

Wednesday:  The third infusion trip is a no OR week.  I’ll be honest, my body was so tired from two trips to the OR in three weeks, I don’t know if I could have honestly gotten on the plane back to DC had there been another OR for this week.  It would have been a pure “God Thing” if I had…and I suppose that’s exactly how it’s meant to be….when my strength fails…His strength carries me.  And while I sit here and type my doubts of being able to do it again, I know without doubt, the strength would have been there at just the right time.  I left the chilly air of Chicago to go to the DC area of sunshine and seventy degrees.  Coat was left at home…not even a light jacket was packed.  Checked in at the NIH, rejoiced over my private room (3 for 3), and reconnected with staff that has quickly become folks I am going to miss greatly when I am done with my season in this trial.  Nurses that greet you with a hug….desk staff that knows your name as you walk into the wing from the doors.

Thursday: My incredible phlebotomist (AKA, nicest vampire ever.) arrived at 5:30 AM….bed was laid flat…because my BP is still not behaving and in small attempts to prevent another “incident” like week one, there are now precautions taken to help my BP do its thing a tad better.  I’ve stopped looking at the vial count or size….research labs are what they are…no sense looking at growing apprehensive of a repeat of week one.  My Vampire and I have had this little unspoken agreement…he comes in, I take out my arm for that day, he does his thing, turns out the light and closes the door.  Remember that….because if you know me..you know that I don’t like to speak when first awoken from my slumber….

Clinic came quickly on Thursday, and I was sitting on the familiar chair next to the scope of horrors….ok…maybe that’s a slight exaggeration….but I’m sorry….even with the nostril numb…I really don’t want to be part of the black lighted scope going down my nostril to enter the airway and view my larynx and such….and then quickly placed down my cannula for a quick peak at the lower portion of my trachea and bronchial openings.  Your body naturally wants to fight this procedure, but I cannot say this enough…Dr. Allen is indeed the “Scope Whisperer.”  He should travel-giving a masterclass in his technique.  Now…imagine my joy when I only had to do the trach scope portion….oh lung metastasis, you have given me a reprieve over a scope!  My lung lesions are my trial criteria instead of my tracheal or larynx lesions…so no scope on this third visit.  Insert very happy dance. I was then on pass for the rest of the afternoon, and after my routine pregnancy test, off I went to enjoy an incredibly beautiful day down in Bethesda.

My doctor highly recommend dinner at a new Greek restaurant.  I must say…I’ve had places such as Taziki’s, but never really had what one would call traditional Greek food.  I’m a huge fan now…I dislike yogurt…as in I don’t understand the mile long display in the grocery store.  The texture and taste just aren’t my thing.  Well, scratch that…I’ve learned there is a way that Greek yogurt and I do get along.  Crispy Brussels sprouts mixed with pomegranate seeds and mint and tossed in a thick Greek yogurt.  So yummy that I’m going to try to replicate it at home this week.  I was in the area for lunch and dinner, so toss in a very French style slice of quiche for lunch…and I think it’s clear to all, I enjoy food.  (PS…the quiche from the French bakery was unlike any I have ever had.  It was tall and light..not dense.)  The sun was setting quickly, so back to campus I went to enjoy watching my kiddo play in concert at Eastman and settle in to rest for infusion day.

Friday:  My favorite Vampire came in again….at 5:30 AM.  And you are not going to believe this…but he wanted to chat….about the negotiation process of buying a new home….umm..we have an unspoken agreement..we don’t talk at 5:30 AM…..I smiled, nodded even….but to say I was relieved when the door shut…well….again…I don’t speak first thing in the morning.  Up, showered, back into comfy clothes for the infusion and then downstairs for “real coffee.”  Then over to procedure wing for ultrasound on my two forearms to mark for IV placement. (PS-this is a super cool thing!) Back to Oncology wing for EMLA cream on those two areas and wait thirty minutes.  Back to procedure wing for insertion of infusion IV.  Back to Oncology to wait for Avelumab to come up and pre-infusion meds.  A 50mg Benadryl push and I are not on speaking terms.  Thankfully, for whatever the reason, I thought to mention my reaction to the drug to the team….and learned that my reaction was not typical and was an opposite reaction.  So, this push was diluted and pushed at a slower rate…so much better.  I did not tense up as badly, my teeth did not chatter…still didn’t sleep a wink…and did get a decent headache as it wore off later in the day…but so much better than the prior two infusions.  An hour after the pre-meds, the bag was attached and the infusion monitor programmed….90 minutes.  It’s surreal to me how much easier this infusion was mentally….the nurse and I literally chatted most of the 90 minutes away.  We were working on solving all of the worlds problems and talking about being a full-time Mom with an autistic child….and how she could work somewhere much closer to her home, but chooses the commute to the NIH because of the mission…how the playing field is level….on the 3NW floor at the NIH…every patient is an equal…cancer doesn’t care about income, status, any of that…and I think that’s what makes it special…every patient on 3NW is fighting something that doesn’t discriminate….it touches every single facet of this world…from the poorest to the richest…patients like me looking for a new cure…patients like maybe the man across the hall possibly there for a “hail mary.”  Every single person there…from staff to patient…part of research..something bigger than themselves.

Two hours post infusion, I was able to go outside and enjoy the incredible weather in the courtyard at my building.  The sun, it’s warmth, medicine for this soul.  Nausea began to creep in, so I headed back inside…insistent on “pushing through” and not taking medication.  My “cure” of flavor blasted Goldfish and a touch of caffeine…seemed to be taking the edge of.  I can do this.  6:20 my room phone rings…ok…who is calling me on the room phone?  Oh…dining services.  “Mrs. McClellan, do you plan to order a meal tonight?”  Umm…..well…..I suppose since you stop taking orders at 6:30 PM, I should do that.  I ordered my standard chicken, baked potato, salad, and a rice krispy treat.  (Do not laugh…that’s one of the few “treats” that still tastes good..and it’s a solid “go to.”)  Recall that nausea I was treating with my “cure”…..anyways….one bite of the chicken….and it was back.  My cure had failed me…enter Princess.

If you recall, I mentioned Princess in a prior entry.  She was, once again, my Friday night nurse.  Princess started prodding me to take the Zofran around 7:30 PM….I, being the self-proclaimed nausea superwoman…was oh no…I can push through it…it just a wave.  10PM….I think I’ll take that Zofran after all.  Now to backtrack a bit on my evening with Princess.

Princess and I had a good amount of time together Friday evening.  The floor was slower due to several Friday discharges, so I found that nurses would linger….and Princess did as well.  We talked about so much….Jesus….religion…differences between here and the democracy of her native African country that her family still visits..her  mother actually lives there part of the year.  (Let’s just say, I would probably have a key to my cell if I lived in her country due to my frequent visits for speaking out against elected officials…) Anyways…then we were talking about my journey the past two years as my faith has been on this winding journey…and we talked about our Muslim friends….and she said something that I will never forget.  She came here at fifteen.  She’s probably late 30’s now…”I never knew religions hated one another until I came to America.  In Africa, Muslims and Christians lived with a respect for one another.  They attended our events, we would attend theirs.”  That first sentence….it’s been on autoplay in my mind and heart since Friday.  And then her telling me she has told her Muslims US friends to consider not wearing their hijab in public…she fears for their safety.  My heart just ached.  All the while, she is oozing joy….a joy that is infectious….a joy that can only be found when one has something bigger than themselves to look towards.  She talked about the way she travels the world with her children…wanting them to see the world in the bigger picture that it is…they live simply and frugally to travel to other cultures.  It was one of those conversations you cherish…but man..that first sentence.  The night came to a close with my Zofran complete….

Saturday:  Discharge day.  When your doctor shows up on a Saturday in basketball shorts bearing the gift of a cup of Starbucks…I mean seriously….how can it not be a great day.  We chatted about what comes next….about different things taking place in the RRP field of treatment….and then…I asked a question that gave me an answer that, I’ll be honest….I’m struggling with just as much as the possible outcome of my next visit the week of March 6th.  This is where I am going to end the day to day chronicle and go a tad off the rails from the prior two posts….

(PS-about half way home, 22K feet in the air, nausea came swiftly and I just prayed that I would make it off the plane in Chicago without being sick.  It lasted all day and was the hardest wave I have experienced so far.  All I can think, is that I did not have on my “patch” that I wear to the OR and maybe that’s why it was so pronounced. Thankfully, Sunday was not that way and today has been easy as well.)

Off the rails a bit…

I knew, when I chose this trial, the bar was set high.  The bar for “success” and the bar for going on to cycle two.  Think of the bar as the same bar the Chicago Cubs strived for…and it took years..a bar so high that you wonder if it’s even possible.  For the Cubs, they finally met that bar and went over it much higher than any dream could have predicted.  That’s the bar set on this trial.  I knew my body was such that it’s not thirty…it is the age that it is…and I knew that I had to also keep in mind possible life altering damage to my organs and endocrine system that can occur with the use of this class of drugs, especially in longer cycles, rare, but it does occur.  I knew that I wanted my participation in a trial to be about more than just me…I wanted the research related to the trial as well as other trials my blood has been used for to count towards that elusive bar of “cure.” I knew going in, I could possibly be looking at three doses and then excluded….and I was ok with that…or at least I thought I was….

I’m done with my third dose.  When I return for my visit March 6th week….it’s my first trial review since inclusion.  My first CT since that initial CT weeks ago.  A CT that will be read without my trial doctors having access to the scan….they will simply get a report on whether I met the criteria for staying in….or my time has come to an end.  My bar…is 30% reduction in size of the largest lesion in my left lung.  30% of 2.4cm.  My world record level bar…is set.  Just a few mm will decide this outcome….and here I am, staring at this bar…that came so quickly….and my peace and assurance about all of it….suddenly, it doesn’t seem “well.”  I know every participant so far has responded….and I also know some have just barely, literally mm, been removed from further treatment.  Wednesday, after Tuesday CT, I will walk into clinic not knowing if I’m headed to OR on Thursday for a standard debulking procedure or if I will be enjoying DC on Thursday and having an infusion on Friday.  I don’t think they will even have to say the words….the team is so invested in the patients on this trial…it’s so personal to them…I think I will see it on their face. And again…it still doesn’t feel “well.”  There’s an unknown to all of this as well….the class of drugs in the cancer field is so young.  Literally, so many just barely out of phase III trials….there’s a huge unknown as to the how it works longterm….once treatment ends.  My disease is considered “pre-cancerous” for trial purposes…and while the lab says one thing…the reality is once you add in the variables of an individuals immune system, the host environment for the lesions….the lab can only predict so much. So, if I don’t reach that bar….will the drug still keep working to reset how my T-Cells work against my disease?  Will even a small response possibly continue on to more of a larger response?  It’s an unknown…..immunotherapy drugs for cancer are filling the pipeline of every major pharma that has a division for these classifications of drugs.  Jimmy Carter is walking around today with no evidence of disease…from his treatment using Keytruda.  The commercials seem like it’s the miracle everyone has been searching for…but reality is…the full response rate is around 30% even for cancer patients….but 30% response if you are stage 3/4 is an enormous success rate….so I take that and I wonder…if that same full response rate applies to my disease…3 in 10.  I so long to be one that hits the trial criteria to continue on….and I so want to be ok with hearing I am not continuing on….but truth is..today…I am not “well with my soul.”

Something else took place this trip….and it’s that thing that has broken my heart….a hope that I had clung to for so long…for now…not possible.  In my head, this trial would go like this:  trial, full course of trial inclusion….no evidence of disease…reconstruction of larynx…de-cannulation of trach.  I go back to life pre-trach…one I remember…a life pre-RRP, I have no memory of…so…but right now I have the best voice I have had in probably 20+ years….so now, I do have the memory of a almost real voice.  One that happens with little effort from me…one that doesn’t create oxygen deprivation headaches…one that allows me to feel almost normal in conversation even with strangers…one that I have used…a lot…often to just say something to a stranger I never would have said prior to now…a “you are so pretty” or “I love that purse” or even saying something to the child sitting on its mothers lap on the airplane….in some odd way, I feel part of this world again in a way I had forgotten what it felt like.  To be able to complete the simple act of using FaceTime and truly being able to hold a conversation with my baby girl, my baby boy, and those precious babies I so adore…..how will I be “well” if/when it goes away?  How will I accept hearing I’m likely never going to live life without a trach?  That’s the news that broke my heart….even if it works…even if I could reconstruct my larynx….the stenosis is so extensive…my life would likely be almost impossible without a trach.  I have clung to that hope for so long…that one day…it would be gone.  I just assumed….I never really asked the hard questions…maybe even I knew I didn’t want the answers…but this weekend…I asked.  And, I’m being honest here…it is not “well with my soul.”

To be even more honest…right now…looking into my return visit…I’m not sure not meeting that bar of 30% is “well.”..or will be “well” anytime soon.  My heart is broken….and my hope that this drug has indeed had such a strong response is so large…that if I hear a no…it won’t be ok then…I’m giving myself permission that if it occurs…it’s ok to grieve the loss…to not instantly go to that fall break phrase of “God knows best,” because…I will likely question it a thousand times to God if I don’t meet that bar….and given my journey with Jesus and everything the past two years…I understand now…that’s ok…..I can question it…I can be angry …and He understands and He will wait on me until I am “well.”  Then I also think…if I meet this first bar….will I selfishly start already asking for the next goal…or will I be “well” just knowing I made it to cycle two?

The song “It Is Well” in so many ways is my life song….some people have a verse that they use…but for me…it’s always been this hymn that has been changed into incredible worship music.  Bethel Music has my favorite version and it’s the version on every device I own…the song I play in those moments..those days…those weeks..where it isn’t “well.”  I cling to that promise…that hope that I honestly…can’t even understand in these current days where my heart hurts…it aches..for something I had clung to for so long…it’s a loss….something I am going to give myself permission to grieve over…just as I will either be celebrating or grieving an answer in just a few days…and I know now…that it’s allowed…it’s even welcomed….it doesn’t reflect a lack of faith on my part or even an unaccepting heart towards my life here in this temporary home….

So…today, much of this is simply not well with my soul…..but I’ll continue to trust that it will be….and that over the next few days as I look at 30% in a way I never have before…I will trust…even if the answer I don’t want comes….one day…soon…it too, will be well with my soul.

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.”

 

 

 

Tune-Up…Things We Say

It’s so strange that I sit here typing with so much in my head and a clear understanding that I am not remotely qualified to write more than, “My name is Kim.” This silly blog that I started as a way to process life with a chronic disease has become at times, therapeutic.  In a way, a virtual journal that some folks read and occasionally like….but more so an outlet to express a day, a week, a month, a season.  Today, I sit here typing with the question swirling in my little pea size brain of….did I start this for me, for you, because I was led to by God?  Maybe, it’s a combination of the three. (This question likely to never be answered fully.)  The move to Chicagoland has forced me so far out of my little “comfort zone” and into a zone where I am forced to really take stock into things I had just taken from others and applied….people much wiser than me…so surely no need to question, doubt, research….verify.  And yet….that’s what I have found myself doing now for a few months…..what if, as I have said before…this was the entire reason I am here….that it has nothing to do with a job…a city….maybe it was the only way God could finally get my attention.  Maybe He had no choice but to pull me up from my roots….

One thing I have been exploring are things I have heard for so long….assuming they were God’s word…or at least a close interpretation of it.  Phrases we say….without a second thought as to if they really are Biblical…you know…those things “good Christians” say.

I think the first offender has to be “God won’t give you more than you can handle.”  Malarkey.  Yes He will, and yes He does.  What is even the point in turning to God if we can truly handle even the hardest of circumstances on our own?  Isn’t the whole point of us being in this broken world to have us see that our only hope..our only way to navigate is by trusting God…something so much bigger than our tiny little humanness?  Everything is more than we can handle…everything.  It’s only because of Christ that we are able to put one foot in front of the other…..That’s the entire premise of faith.

Isaiah 41:10 (The Message)

 “But you, Israel, are my servant.
    You’re Jacob, my first choice,
    descendants of my good friend Abraham.
I pulled you in from all over the world,
    called you in from every dark corner of the earth,
Telling you, ‘You’re my servant, serving on my side.
    I’ve picked you. I haven’t dropped you.’
Don’t panic. I’m with you.
    There’s no need to fear for I’m your God.
I’ll give you strength. I’ll help you.
    I’ll hold you steady, keep a firm grip on you.

God never says, Oh Jacob….pull up your bootstraps and figure it out.  If we could handle it…why oh why would God have sent Christ to die on that cross at Calvary?  We can’t.  We didn’t. We never will be able to.

This next one has been swirling in my head a lot lately….maybe it’s all the political rhetoric floating around…maybe it’s being more connected to a health community where I know folks that are wonderful, Jesus loving folks…that well…struggle…whether it’s emotionally, physically or financially….struggle is a daily routine.  It’s the phrase, “God helps those who help themselves.” I see that, I hear that and all I can do is sit and go…nope.  That runs against the entire Gospel of Christ….Sally, well Sally is exactly where she is because she can’t help herself….well…what if Sally really can’t?  Sally, through  no fault of her own, has an illness that makes just walking outside her home a nightmare we can’t imagine?  It seems, to me, the attitude of self-reliance and self-righteousness just doesn’t match up with Matthew 16:24. My new thought process on this is God intended us to be a community…so that when one of us is not strong…weak…whatever the issue may be…we come alongside, with Christ as our captain….to hold that person or community up….and sometimes…that’s a very long gig…sometimes it’s not.

Matthew 16:24 (The Message)

 Then Jesus went to work on his disciples. “Anyone who intends to come with me has to let me lead. You’re not in the driver’s seat; I am. Don’t run from suffering; embrace it. Follow me and I’ll show you how. Self-help is no help at all. Self-sacrifice is the way, my way, to finding yourself, your true self. What kind of deal is it to get everything you want but lose yourself? What could you ever trade your soul for?

There are so many more things we say…I’ve said….because well…maybe it’s because I grew up with it and just assumed…maybe it was something I heard in a sermon one day….and I sit here and just type these words going, “Man….some of these things are just hurtful to others.”  I have a feeling this season for me might be a tad long…a season where I have a very long overdue tune-up.  Last night, in a message, the challenge of “Resolve” was issued…so, my “resolve” is that I’m checking my vocabulary…my phrases…and I am going to likely blog as I uncover more of things said…that well…sound all Christian…but aren’t…just man-made gibberish.

As I close for today…I just received a verse via a group text I am part of daily…I close with this:

2 Peter 3:17-18 (The Message)

“But you, friends, are well-warned.  Be on guard lest you lose your footing and get swept off  your feet by these lawless and loose-talking teachers.  Grow in grace and understanding of our Master and Savior, Jesus Christ.  Glory to the Master, now and forever.  Yes!”

I’ll make a point to title these blogs (my chronicle of my tune-up) so if you want to skip…well..it’s easy.  I’ll start with “Tune-Up.”  Kimmielou signing off….up since 5AM…clearly time for more coffee.

PS-Farmers Almanac is predicting a doozy of a winter here….currently looking for anyone that needs a house sitter on a tropical beach from December-March.  (Insert fact…Kim doesn’t like winter…even mild winters.)

When the Bottom Gives Way

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

images

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

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

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

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

IMG_0363

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

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

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

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

Moving a Life…One Foot In, One Foot Out and Isaiah

faith

We are in a sea of boxes, a sea of disorganization, a sea of organized chaos….we are in those final steps of getting a home ready to be loaded on a truck for interstate travel.  We are in limbo.  One foot in, one foot out.  And yet, just as I am looking around and begin to ask God what in the world He has asked us to do…..I see a posting about Isaiah 43.  Silly Kim.  How can I question His plan when He, in all his power, made a road through the desert….asked of His people to trust Him, because He has already made the way.  Yet, here I am typing, looking at a sea of boxes and asking Him just that…..my Human is in fully force.

I suppose this season of “lasts” has made me a tad more emotional than I want to be, but my Human is honestly starting to freak out.  Still, I trust.  I trust God’s plan and I trust Lee’s direction.  Still freaking out.  I sat in church Sunday and honestly can’t tell you three words the pastor said…I was too busy looking around soaking it all in….that last Sunday to sit in “our chosen pew” (Cause ya’ll know us Baptist got assigned seating!)….the last Sunday to get those sweet and precious hugs from what we refer to as “widow row.”  Yet, I sat there realizing I no longer “fit.”  One foot in, one foot out. God is already moving me forward, if I keep trusting Him to do so and not force my feet to stay planted.  (What my Human self desires to do.)

There was the last time at Marketplace Grill, Mr. B’s, Slim Chickens, last visits as a resident with dear friends….the last time our Josh would board a plane back to college from this airport.  I know we will be back, but never again as a resident.  We will be visitors.  That’s an odd notion to wrap your head around during this process.

There are so many boxes and totes…we are literally moving a life.  Twenty-eight years of marriage, of life….boxed carefully and ready to be transported.  To the outsider, just stuff, but to me….my life.  From the silly notes Josh wrote to his Dad many years ago, the tote full of at least 100 matchbox cars, a box full of Meg’s memories from pageants, high school…..finding my bouquet from my sister’s wedding (yes, it was silk)….our wedding album….treasures that have been passed down from grandparents, parents, friends….old Bible study books with notes that fit that season….a life…in boxes.  Realizing I need to stop soon and write the history to certain items so that those memories, those facts are passed down and that item doesn’t just become stuff.  (My Granny Page was a master historian.  I treasure that quality so much now that she is gone and I can look at things passed down and her notes remind me of why it was given to me…what it meant to the person it came from.)

So, it’s here.  Forty-eight hours until we head that way to find housing and one week until the movers pull into the driveway.  Moving a life…..one foot in and one foot out….with the hope of His promise that He has made the way so that soon I will type…both feet in.

Isaiah 43:16-21 MSG

16-21 This is what God says,
    the God who builds a road right through the ocean,
    who carves a path through pounding waves,
The God who summons horses and chariots and armies—
    they lie down and then can’t get up;
    they’re snuffed out like so many candles:
“Forget about what’s happened;
    don’t keep going over old history.
Be alert, be present. I’m about to do something brand-new.
    It’s bursting out! Don’t you see it?
There it is! I’m making a road through the desert,
    rivers in the badlands.
Wild animals will say ‘Thank you!’
    —the coyotes and the buzzards—
Because I provided water in the desert,
    rivers through the sun-baked earth,
Drinking water for the people I chose,
    the people I made especially for myself,
    a people custom-made to praise me.

Fantastic Friday-Renee’s Story

Today’s Fantastic Friday RRP feature is by Renee Sawn.  Renee lives in Florida (ok, jealous of that factoid) and has been a very active member of the RRP community.  Read her story and notice that she does have specific financial needs that maybe someone out there can help with. The financial toll, even with insurance, is enormous and I cannot imagine the stress Renee feels on a daily basis.  Her faith in God is strong and she is always the first one to encourage a fellow RRP family member.  

Renee

Renee

I have RRP ( Recurrent Respiratory Papillomatosis )

I have had this disease all my life. I don’t have much of a memory just bits and pieces from my childhood dealing with this disease.  My first surgery was when I was a 8 (1978). Before my surgery I had been seen by many doctors … Trying to find out why I didn’t have much of a voice when I talked it was very hoarse. I remember going to speech therapist and being told after many sessions that I was not improving. I remember we took a long trip to a hospital.( All children’s hospital )  And finally my mom got answers and a diagnosis. Next memory was surgery day. I remember lots of ice cream and Popsicles and was told I needed to rest my voice for 2 weeks. I do remember after that people saying oh your voice sounds much better and telling them I had surgery to fix it… Time passed my voice started getting hoarse again.  Back then this disease was very rare to most doctors and they themselves did not know much information. So my parents didn’t know much either. They were told to have it checked every few years. When I did I was told it was scar tissue they were seeing and that is the reason for hoarseness…(now knowing it was tumors they were seeing) so at this point surgeries where never recommended. (I believe I dodged many in my life knowing what I know now).. some of the bad memories of having RRP .. All through my childhood I was teased because my voice was different from others. Called me names like froggy ..  Spent many times behind closed doors crying because I didn’t want people to know it bothered me. I had difficultly feeling confident about myself. I didn’t want to meet new people because I didn’t want them to hear my voice. I have been asked many times are you sick? Or sounds like you have laryngitis you should go see a doctor .Over the years I also had coughing fits.  Would go see a doctor and because of the lack of knowledge I was sent home and was told you have bronchial infection take these meds… With lack of knowledge  this is what I did …I never got better just dealt with it and ignored my my coughing fits and my hoarse voice thinking it was my normal….going forward to 1993 I started with a company cleaning houses ( didn’t have to do much talking for this ) within time I was promoted to training then sales then to working in the office. This required me to use my voice. Oh boy now I had to speak to strangers .. There wasn’t a day that went by I wouldn’t hear something about my voice…I would just say I’m healthy I have RRP and doc says I’m fine it’s scar tissue that makes me hoarse (at that time that’s all I knew) this was my normal ..   Skipping forward…     In August of 2013 I had totally lost my voice and had difficulty breathing. It started with having a hard time talking.  I found myself straining to get anything to come out … and then going to a whisper thinking I had laryngitis… Unfortunately it changed my whole journey of life…. Over the years I had accepted what I thought was my normal I had a hoarse voice and it had a name RRP… so at this time thinking this something different I was dealing with… Because of where my voice was I had been terminated from my job of 20 years. Because I could no longer perform my duties (I was an office manager and required me to have a voice)  I was at a loss..here I was out of work .. No insurance …I didn’t really know where to start … I was out of my comfort zone..  I knew had to find a doctor that could tell me what was going on. I ended up going to the ER … I was scared and breathing was difficult .. I didn’t have a voice .. I didn’t know what was going on … Well I was sent home with no diagnosis and told to go see ENT … I saw one the following day. I did let the ENT know as a child I was told I had RRP …lucky for me this ENT knew what the disease was. First thing he did was looked and said you need surgery … And stated he was not able to perform because he was not trained in this and the equipment to perform is not available in my area so I needed to make phone calls to find a doctor who did. I would like to mention he knew that I had just lost my job and had no insurance and my emotions showed when I was told what was going on. He walked me out to the front to pay for my visit and told the nurse no charge for today…my words where “thank you God Bless you there are kind people”…well onto my next journey…. That was a challenge … my voice was at a whisper and had to use the phone to call and explain to whom had answered the phone what I had and what I needed. I had made many calls and kept hearing no we don’t do that surgery. I was at my last wits thinking is anyone out there do this ? I called my ENT crying and let them know I couldn’t find one and it’s been very difficult to keep going because the more I used my voice the more difficult it was for me to get any noise to come out. They were a big help and the next day the office called back and found someone that just came into my area that could see me and was specialized in this disease. The office is an hour away from me. This is where my frustration comes in I HAD NO INSURANCE …NO JOB how am I going to pay for this. I reached out to find solutions,  had doors shut on me because my husband worked and made too much $$ for help ?? Not sure how this works for a family of 4 ( I have 3 children one living on her own 26 and two 13 & 8 ) with one income how this doesn’t qualify for NO help ..that’s when my ex- sister In-law started a fundraiser to help raise money. I was blessed by many to donate to help with getting me to my first visit for my scope. This is where it was confirmed I needed surgery. That was my first hoop .. Now off to the hospital to find out cost … Yikes $50-60k … Now what! I did lots of praying … Well this is where we qualified for medically needy ..so my surgeries where covered …   I had 2 surgeries in Oct & Dec 2013 that corrected this & actually improved my voice quality. I now go every 6 weeks for a scope to keep the disease monitored. It’s been a long struggle. I have had to find ways to pay my bills and medical expenses (if medical is under a certain amount it’s on ME) With yard sales , fundraisers , churches and family & friends I have gotten through …  I can say I do look at life in a different way. The small things in life have now become the big things in life… I have been searching over a year to find work with no luck of getting hired. I lost count of how many applications I filled out …

Many times I pointed my fingers at me and took blame for our troubles. I had anger and said the Why Me ..but had to keep positive on the outside… I am a believer of God and continue to keep my faith … It’s more stronger now than it was because each time I was ready to give up I said a prayer and my prayers and they were answered… I am blessed with a beautiful family. My 3 children & husband … They have taken the burden of my disease & have been so supportive.  I truly am blessed. My family & friends have been a blessing… Strangers that I now call my family have been my blessings .. an extended family the RRP family …

In February 2014 I was told I now have the cancerous form of this disease.   This will be monitored and also told more growth has formed.  My next surgery date had been scheduled August 22nd 2014 to remove more tumors that have grown back this time we were going to do what they call in office visit … No going to sleep , less time , and cost was not as high verses in hospital … I was all in ….  Well couldn’t do it … 3 Valiums later ( I get anxiety when I get scoped) and numbing several times my gag reflex just wouldn’t allow. So have to stick with going to sleep. .. We are going to give it more time to let growth grow more unless I see my a change on my vocals or breathing … So next visit Nov 2014 … I started a Facebook page to help me through this and for awareness … https://m.facebook.com/Sunshineswfl .. Keeps my mind on the positive ..

For now keeping my faith for that cure…