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….Cycle One….Infusion Three……

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“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.

The Avelumab Journey…Week One

I’m going to blog/journal this season….mostly for my memory bank…so I can look back and remember…and celebrate the successes as they come..and mourn the failures as they occur.

Monday:

It was a very eventful flight from ORD to DCA.  With travel advisories along the northeast coast due to strong winds, the DC area was not included….and if you look at a map, the proximity to “travel advisory” area was….well….let’s just say the last forty minutes was a roller coaster and grown men were clutching their arm rest.  I do not have a fear of flying, but I will be perfectly fine if I never have another flight such as that one.

After a shuttle from DCA to the NIH/NCI….it was time to get started on what has been a two year journey.  (see prior blogs for more on the journey)

Let me begin by saying that the NIH is remarkable.  Walking in and knowing every single patient there is in a clinical trial…and if you know the vastness of the campus, you know how inspiring it is to see an atrium full of people…all there to either be a patient, support a patient, act as a researcher, a care giver, a member of our military in medical service…to see the goodness of our tax dollars at work.  To look at the mission statement of the facility and be in awe….to know everyone there has one purpose…medical science.  Tomorrow’s cures, todays novel treatments, and eradication of diseases of the past.  Doctors, nurses, fellows, patients, caregivers, shuttle drivers, administration, hospitality…from diverse backgrounds…from around the world…with one goal:

img_4947It’s still inspiring each time I read this statement.   To know so many across this world do not have access to such care and research and feeling so unworthy that I do.  Realizing for all the issues our  healthcare system may have, people travel from around the globe because of the  level of healthcare in this country.  Let us never forget the scientific research and the resources required to have that standing in the world in regards to healthcare.

After visiting admissions, I was taken to the unit that would be my home for the next six days.  As I exited the elevator with my admissions counselor, and we turned to the right…there it was.  Oncology.  One word…on the plaque indicating our location…the moment things began to feel real….I was really doing this.  I was here.  Soon, I was greeted by those who would be caring for me during my stay-in my private room (insert happy dance).  Nurses, research teams, doctors, fellows, social workers….just when I was certain I had met everyone, another group would come in.  This is where the NIH/NCI gets way cool.  Yes, I was there for a specific trial…but…there were other trials ongoing that my blood/tissue would be of help to.  Trials regarding the history of viral infections, trials working to map the genome of the disease, trials involving manipulation of T-Cells to create a desired response…some crazy cool research….of course I wanted to be part of that.  To know that my participation could possibly lead to answers for so many….(this decision would also cause me some unpleasant issues, but nothing worth having comes without hardship-right?) A whirlwind of activity and then it was time to use the glorious “pass” to get off campus and enjoy dinner…

I’ve been part of the RRPF for years…people have become like family…people I have never actually met in person.  One of the greatest gifts in my travel lately, is that I have had the opportunity to meet people I have spoken with for years.  This trip, was no exception.  The Woo’s have been an integral part of the RRPF since its inception.  Their daughter, Jennifer, was honestly a rock star to our community.  A Georgetown Medical graduate, she was also a RRP patient…and also had pulmonary involvement that had converted.  She exuded joy and passion and she is greatly missed by so many across this planet we call home.  Being able to sit down with her sister and her parents…and to be able to talk about RRP and finding out things about a family that has worked so tirelessly not only for their own child, but for people across the globe…it was an honor to sit with them…a debt I can never repay for the hours those original members have put in…for the goal of a cure.  Monday…my cup runneth over.

Tuesday:

Tuesday began at 5:30 AM.  My door slowly opened to my room, revealing a glimmer of light from the hallway…”Blood, I’m here for blood.”  I hear the cart rolling over to my bed and there he was…seriously, the kindest appearing man. He would be “the vampire” for my entire stay.  That’s my phrase, as there was seriously a lot of blood taken during my stay.  The wake-up call of blood draws signaled the “green light” for everyone else to begin their day with me.  There was the EKG, the CT scan, the vein assessment for aphresis (which I did not pass), clinic visit where I was able to spend time with my best friend, “The Scope”(Although, I do believe Dr. Allen may in fact be the “scope whisperer”)..and then the formality of signing final consent forms.  Everyone, from point A to point B was so kind and qualified in their role.  I do not give out medical compliments lightly, as I have a large memory bank to pull from when the words “exceptional care” are used…and Tuesday was “exceptional care.” I was given a pass to leave campus for dinner if I so desired, but the time change and my day just said, “let’s keep this party on campus tonight.”  So, I took out my dining menu (yes, an actual menu) and ordered dinner and spent some time working on “Armor of God” and of course, social media.  Soon it was time for 10PM vitals and meds, and my first full day was done.

 

Wednesday:

Wednesday began just as Tuesday did….the sound of a rolling cart approaching my bed.  He gathered the tubes…readied my arm, prepared the butterfly catheter….wait..what….my barely awake eyes noticed there were eight empty vials on my bed…inches long.  Ok..no problem….then…about tube four…a cold sweat, dizziness, tingling in my face…”I am super woozy”…..those words….and suddenly a nurse appeared, ice bag was placed behind my neck…and I felt miserable. BP was taken….64/31.  Oops.  Bed manipulated to bring my head lower than my legs.  After about an hour, it had risen enough to allow the nurse to leave the room.  I was exhausted.  And my day had not even started.  Soon, against my body saying “rest, Kim, I want rest,” it was time to head over to Anesthesia Assessment.  Again, I cannot explain the quality of care with every department that I received.  Since my aphresis was canceled due to my veins not being able to support the pressure that would be required, after my anesthesia consult, I was able to return to my room and rest.  Teams came in and out, but I took advantage of an unexpected free morning to just “sit.”  Soon, it was time for Lee to arrive and the two of us enjoy my final pass for the week.

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My, I’m pushing fluids face…while waiting on Lee to arrive.  

Lee came in and after he got settled, we left for the Bethesda Row area.  (Ok…if you know me at all, you know why I picked that area….cupcakes…) We had the kindest NIH shuttle driver.  He was this man who had a presence that would fill a room, but such a heart for what he was doing for others.  We learned he was Mormon and that he loved getting to know the patients as they returned back to the NIH.  Such a servants heart.  Soon, it was time to head back to campus to beat the clock on meds…..normally, the night before an OR visit, I am filled with enormous anxiety.  I wasn’t looking forward to the OR on Thursday, but I wasn’t anxious about it either.  I had that level of confidence in my team and in the fact God had opened this door and had it all covered.  My job was to just “show up.”  With an Ativan for good measure, it was time for sleep.

Thursday:

I was the second case of the morning.  Lee came in around 7AM, well after the “vampire” visit and a couple of nursing visits…..soon it was my time to go back to pre-op holding.  Lee was able to come with me.  He was able to stand by my side until the moment I was taken back to the OR.  IV was started by my anesthesiologist, everything verified for the millionth time, my cocktail that prevents me from getting sick verified as well….and then…right in front of me…a huddle.  Every one on my team….doctors and my OR nurses and my anesthesiologist, came together to go over the plan one  more time as a group.  That’s the last thing I remember…and even it’s somewhat vague.  Soon, I was back in the room, with no pain, no complications, no sickness…just the strong desire to sleep.  I vaguely recall Dr. Allen coming and telling me he got 12 samples…or maybe it was 14….the math is a tad fuzzy there.  The good news is that so much testing can take place due to sample count….which not only could benefit me, but countless others down the road.

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My vocal chords post-op.  The little bumps you see at the top are papilloma.  

Here’s a funny on Thursday….I barely recall having Lee order me noodles for dinner.  It seems, based upon the note I wrote listing my food options, I also asked for toast and jello….literally, zero recollection of this….the note was his proof. I don’t recall getting on social media Thursday evening….thinking maybe I should double check and make sure I haven’t caused some type of International crisis….or said something to place me on a watch list somewhere….hey…stranger things have happened.

Thursday came to a close.  Friday was coming….Friday.  And just like that, the enormity of my decision poured over me.

Friday:

I want to say that I opened my eyes on Friday morning free of anxiety.  From the blood draw, to the time I was sent down to have my IV placed via ultrasound (yes…my veins are that high maintenance)….the entire morning was just surreal.  I could see the seriousness of the decision on Lee’s face…and I felt it so heavily on my heart.  There wasn’t a moment of second guessing….just that moment of gut check… I have signed consent for a drug to be introduced into my body that will alter my immune response.  A drug created for Stage 3 and 4 cancers….but becoming more and more accepted as a possible first line defense, especially in those immunotherapy drugs already on market.  A potential game change in cancer…and if this trial is successful, a game changer in the treatment of RRP and pulmonary RRP.

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The Infusion IV is ready.

After IV placement, I went back to my room.  It was merely a waiting game now.  Waiting for pre-infusion drugs to come up and the Avelumab to be delivered.  They said when I had the Tylenol and Benadryl administered…it was almost time.  It was almost time.  50 mg of Benadryl does not play nice…let’s just put that out there.  The process was started.  The bag was hung, the tubing fed through infusion pump….and attached to my IV port.  Two nurses double checking every single step.

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I watched every drop….every move of the nurses.  

I’m not a snuggler…I honestly can’t tolerate the sensation of someone breathing close to me….it freaks me out.  In this moment, I asked Lee to get beside me in the bed.  Not out of fear. but out of that strong desire to feel safe in what was entirely unknown-Lee has been a steady safety net during countless trips to the OR…today would not be an exception.  Would I have instant reactions….and I watched…every single drop…each increase in timing of dosage….sleep from the Benadryl escaped me….she did not arrive.  Two years….two years of doctors appointments, scans, differing opinions on what course to take….and here I was….at the destination of this journey.  I don’t think I will ever forget that moment the nurse looked at me and said, “we’ve started.”

And then….a little over 90 minutes later…it was completed.  My BP doesn’t care for the drug, but not in a way that would disqualify me from the trial. I slept.  Tears were shed by Lee and I both..but sleep did come….finally.  The exhaustion of the moment overcame any desire to try to stay awake the next couple of hours.  Dr. Hindrichs, the head oncologist on my team, as well as the PA and research nurse and social worker all stopped by…I can’t recall a single word that they said to me or I said to them.  Friday evening came…..and no concerning side effects had occurred so far…

Then…night came…and I met Princess.  Princess was my nurse for Friday might.  Princess was a bucket of bubbles bottled up in a person.  She came here from Africa, completed her education and obtained her MSN.  She had been on the oncology floor for over 12 years.  Tonight. God gave her to me.  I was her only patient…We laughed about things I can’t even recall.  She shared her concerns over events of the days last week…and then…still said she would always choose hope and joy.  That’s what she wanted her children to remember.  Hope and joy.  She let me sleep Friday night.  After my 10PM vitals, she agreed to let me sleep, only checking on me by slightly opening my door during the night.  At 6:30 AM on Saturday, she came in just as bubbly and hopeful as the night before.

Saturday:

My BP was still acting up…nothing like on Wednesday AM, but enough of an issue it required doctors clearance to release me, even though my orders were already in the day before.  I promised to push fluids….it remained steady….I was free to leave.  The taxi was waiting for us downstairs at 10AM.  DCA here we come.  The driver…hilarious.  He was telling us the most bizarre stories of fellow drivers during trips to the CIA and other “top clearance” areas around DC.  He pointed out several landmark areas for us….often with the eyes off the road far longer than my heart desires….but we arrived safely.  Soon, we landed at ORD and to our little cocoon of rest.

Saturday was hard.  The fatigue from the drug slammed against me like a freight train.  I was spent.

Sunday:

I woke up after twelve hours of rest feeling refreshed.  So much better than the day before.  There would be an occasional wave of nausea, but nothing worth even making a fuss over…a few sips of ginger ale did the trick.  The fatigue was better…and seemed to come in the late afternoon after Lee and I had escaped for some Mexican food.  I’m eating…because I know it’s important…but my appetite is a tad down.  My hips are likely doing the Cha-Cha over this….oh..those cupcakes from earlier in the week…I had four out of six….in Bethesda.  Still haven’t had a commercial red velvet cupcake that I say, “this is good.”  I’m a master of red velvet…one day I hope to try one that I find worthy of four dollars.  Until then…I’ll just say…mine are better.

I’m cleared to return February 6th for another week at the NIH.  Then two weeks after that, I will come in just for the infusion….before returning two weeks after that for another full week and first evaluation of whether I stay in or I’m removed.

Today:

It’s time to head to my primary for the labs required on the weeks I am not at the NIH.  I honesty don’t know if my veins will show up.  Praying they do…because I have zero tolerance for anyone that can’t get in on the first stick….I’ll confess…I can even be rude about it.  45 years of needles will do that to you.  Needles do not bring out my most Christ-like characteristics.  I’m honest about it….that counts doesn’t it?

So far, I’m not glowing in the dark and haven’t exhibited any Hulk behaviors….the day is still young though….

To be continued….

 

 

Social Media and “Real Life” and Anxiety

Two things took place this week that have caused me to pause and reflect.  The first was a social media status from a young mom lamenting the “perfect picture” that most present on social media.  She made a war call for folks to have “real life” social media, at least balance that with the “perfect life.”  The second was as I watched an event at our beloved church in Arkansas.  The event was presented by Tangible Truth Ministries and was entitled “Addicted to Anxiety.”

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I’ve said it before.  I do  not think I would survive being a young Mom in today’s social media driven world.  I would wake daily feeling as if I was a total failure….because by human nature I would look at all the “perfect lives” on Facebook, Instagram, blogs and feel defeat.  It’s unfortunate social media doesn’t come with a “baloney meter.”  I have looked back and I have found myself guilty of “tooting the horn of my children.”  There’s nothing wrong with that, BUT, it has to be tempered with reality.  Real life.  The world sees that Johnny made straight A’s, was awarded perfect student of the  month and was just sent a mail-out from a prestigious summer prep program.  What’s not seen is that Johnny regularly slaps his sister in anger when they fight, or that Johnny screams “I hate you” at least ten times a week or that Johnny falls apart each day as he walks in the door from school from sheer exhaustion of keeping up his “perfect life.”  Now, don’t put all your Mama drama on social media either…cause frankly….that’s exhausting too.  Do put your pleas for prayer or wisdom.  Be real on those days you long for the beach and two hours of sleep without a kiddo interrupting you.  That’s real life.  Real life is sometimes dinner is a bowl of cereal and fruit and well….even that was a miracle to make happen.  Life is messy…keep it real.  Keeping up with the “perfect” blogging world some present, or the perfect Facebook land others present or the pictures of the perfectly styled children on Instagram…..it will eat you from the inside.  This same message is true for those of us more seasoned.  Stop looking over at Susie’s “perfect life” and wishing you had it.  It’s not perfect.  Susie is just doing a better job of painting one for the outside world.  Real life.  Real people.

I’ll be honest.  I really thought I was pretty together until last night.  I realized, very quickly, I have a whole lot of junk in my shopping cart that is anxiety related.  What’s puzzling to me, is that I didn’t think of it in an anxiety way before.  Angie Smith, yes, that wonderful Christian author, was my first “oh my” moment.  I knew that I really did not care for new social situations.  I tend to look present, but in reality, I am sitting up on a cliff waiting for the situation to be over.  I have always felt  judged, compared, and even devalued….but for what reason, well…I know two devalue buttons, but I will have to get back with you on how this works out.  Anyways.  Angie Smith was being “real” about her life and her journey with anxiety.  She was once told something that will resonate with me for a very long time.  “Wherever you go, when you walk in the door, assume you are welcome.”  Wow.  I can honestly say, that for the most part, this has NOT been my life mantra.  I do better when I have a strong social butterfly friend with me, as I can somehow feed off their energy.  (Does this make me one of those fish who rides on a shark for food???) Until last night, I never really called it anxiety.  (I’m certain now is where therapists are beginning to circle my blog…that poor girl.)

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I wish I could just post here every single scripture or word by the speakers that I wanted to tattoo on my forehead.  I simply don’t have that brain capacity for memory and I did not take notes. (Event attendee fail.)  One other thing that I have said a million times, but it is worth repeating here…and is actually an integral part of the “Circle Talk” given by Susan Goss, of Tangible Truth Ministries.  “You were NOT meant to carry God’s load.”  Oh, how many times have I tried to carry that load and only when crippled in grief did I release it to God?  Is that a female thing, to try to fix and carry…or is it a matter of a hole in my relationship with God?

So, I am pondering.  What’s your anxiety?  What’s  your “real life?”

The feed from the ministry is available at : http://www.fbcbentonville.org  Right now, one part is on the front page and the first session is under Women’s Ministry.  I encourage you to watch.