Sixteen More Days…

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

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

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

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

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

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

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

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

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

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

Recurrent Respiratory Papillomatosis Foundation…Social Media Roll-Out

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@RRPFORG, #RRPFORG, #RRP

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

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

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

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

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

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

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

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

While We Breathe, We Hope!!!

Masks

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Unknown

Avelumab…That’s A Wrap

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

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

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

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

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

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

Option four looks the most appealing.

 

 

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

Now what…

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

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

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

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

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

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

 

Avelumab, Evaluation Week….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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.

Avelumab, Cycle 1, Week 2

“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.”
― Nelson Mandela

I’d like to change the word “man” to “woman.”  Done.

Fear….anxiety…..two words that have followed me into the OR for most of my life.  It was never about a lack of faith, and I honestly find it incredibly cruel when people say to others, “If you had more faith, you would have less fear/anxiety.”  Can we agree to toss that line into the compost pile?  Back to fear/anxiety….I suppose as I grew older and learned more about what can happen in the OR, I developed a fear of the process.  Each needle would create a tension that worked against my body relaxing to lessen the pain.  Then the major medical mistake that nearly cost me my life….and an irrational fear took over any resemblance of rational thought when it came to any type of medical procedure….my first thought when coming out of anesthesia had become, “I am alive.”  Mix all of this into a life where over 250 surgical procedures have taken place….and it’s not too far fetched to say there could be some PTSD in all of this….a reluctance to do what is needed in order to live life more fully…because of the fear and anxiety of past issues and knowledge of what can and does happen under general.  None of which is in existence because of a lack of faith…if there was a lack of faith issue, I think long ago I would have grown so angry at God that I just walked away entirely.  So, I start with this on this blog entry just to gain a little insight into why what seems so mundane…is truly a celebration for me.  My entering this trial, was a giant leap of faith….a giant test of what my courage level is…and even greater test of what I was willing to work through when the fear knocked so loudly.

Cycle One, Week Two

Monday:  I arrived into DCA after an uneventful flight.  If you read about the prior flight, you know this was a very welcome change.  It’s still unnerving to enter approach at DCA and see water in front, behind and on the side of the runway.  Much like that runway at Boston.  The wheels touched down and you are thrust forward as the brakes are applied to prevent water issues.  I’m always silently relieved when the person next to me isn’t a chatter.  I am simply on the plane to get to point B from point A…..I’m not that passenger who even tries to utter more than that polite nod and smile as the person sits down in their seat.  I follow that rule of, “if earplugs are in, or a book/iPad out…there’s your sign to not speak.”  Soon, I was on my way to the NIH campus to get admitted and being the week.

Monday brought a fun adventure for dinner into Bethesda.  I was able to finally meet a Chicagoland person that I had met via Facebook through an Arkansas friend…crazy that it took being in the DC area to finally meet.  Such a great time of learning about one another…and oh the crab cakes….Alabama sourced blue crab, hardly any filler….oh how I love those crab cakes!  I am beyond grateful for the gift of independence given to me while I was growing up.  It may not have seemed like a gift at the time, but now…I treasure it.  Not being afraid to travel alone, venture into parts unknown…tackle public transit…and walk confidently as I explore…thankful.

 

Tuesday:  This week of the cycle was more downtime due to no scans or other testing outside of copious amounts of blood drawn each AM…at 5:30 AM.  Seriously..I’m calling it. Vampires…the nicest vampire in the world…but still….work done before the sun rises…and it’s blood…there’s a possible link.  (This is alternative facts.)  So, once AM labs were done, it as time to get ready for clinic that afternoon.  Back to the fear/anxiety paragraph…over the years, I have developed a true fear of being scoped in the clinic.  There have been times I literally had tears running down my cheek, simply from being so fearful of this procedure.  I know God knows that fear…and He also knew that I needed to do this trial.  The first scope by Dr. Allen in December, I used music to try to distract my brain from the process.  It was the least uncomfortable scope I have ever had.  And then we are at this past week….and I used no music…nothing…I’ve jokingly referred to him as the “scope whisperer” and I am amazed at how the fear is just gone.  Once my video was complete, I was done for the day, so I put on my “Where’s Waldo” hat and ventured back out.  PS-passes off campus are a glorious thing.  I grabbed a late lunch/early dinner at an authentic Spanish eatery.  There were  menu items I would not touch in a million years, but was thankful for a great waiter who guided me towards safe choices….I’m a fan of those safe Spanish choices.  Tapa style eating is awesome!  Then I grabbed the Metro back to campus and caught “This Is Us” on TV, and called it a day.

 

Wednesday:  Due to my pitiful, small veins, I was not cleared for Aphresis…so once my AM labs were drawn and I had seen everyone on the teams dealing in my care…and the visit from the social worker….I had a free day.  There was talk of running fluids to prop up my BP, but that would be done that night if we did it at all…..so with confidence..down to the Metro I went…I was headed into DC to the Newseum.  (If you know me, you know I am a total news nerd…so when I heard there was an entire museum dedicated to the First Amendment and historical pieces from all mediums in journalism…well…my Disney World.)  Then….I was stumped.  The side of the Metro that would take me where I needed to go, was down….and the marquee with how to use the one track going both directions was down…I was a lost goose.  I had no idea what to do….so…..because I’m such a go with the flow person (you can laugh now), I came back up from the depths of the Metro and decided I would just walk into Bethesda Row area.  Being able to walk 1.4 miles in February and not be a popsicle…glorious.  I was able to pass by things on the NIH campus I had missed, always being on a shuttle or down in the Metro…able to see small businesses up close, venture into an incredibly nice Teeter….I know my being able to do such a jaunt (even if it seems small) is a gift….there are times when that would seem an impossible feat, so I am grateful for those days where normal seems almost within reach.  NIH rooms are equipped with the most awkward showers.  I can barely shower safely, so washing my hair is just a big production.  I decided to take in a “blow dry bar.”  This was my second time to use one of these, and I must say…better than a pedicure.  Once my hair was “southern high”, I grabbed a late lunch….and returned back to campus catching an NIH shuttle at one of the local hotels.  NIH makes getting around so easy.

Once back on campus, it was time to do those little rituals that I think help with OR days.  If for no other reason, those rituals give me some sense of control.  Soon, it was Ativan time…if you don’t take advantage of the beauty of Ativan before OR procedures…you should. And in the blink of an eye….the two hard days were here.

 

Thursday:  I have noticed, that OR days bring a different pace to the nurses caring for you.  I’m one of those that had rather wait to closer to time to change into that lovely gown, but it creates stress for those charged with getting me ready.  Patch-on.  Second Ativan-check.  Time to roll to pre-op.  OR days are just odd to me now.  When I was younger, the bounce back from all of it was so quick.  Now, it’s simply not the case.  I remember the IV being started….and that’s about it.  My next memory would come about 8 hours later…when I was awake long enough to eat some of a baked potato and drink some fluids…then back to my own “La La Land.”  My OR IV failed during the OR, so I woke up with one hand swollen and throbbing and an IV in the hand that had no IV just a few hours earlier.  One cannot express the confusion this created in a very drugged mind.  I would write more about Thursday…but I honestly don’t remember anything else.  Only because it’s written down, I can say there were no new growths…and maybe some change…too soon to really know if it’s change we are seeing.

The big news of the OR and the week comes at the end of the blog…

 

Friday:  My second OR IV was failing, so it was a relief to get that removed before it caused more issues.  Before I could even brush my teeth,  it was time to head to the procedure wing to have my infusion IV started.  It’s so important that the infusion IV be in a strong, healthy vein, they use ultrasound guided methods to start that IV.  I’m an IV baby.  I want the injection of local….that wasn’t written into the trial protocols, so I have to settle for the cream.  It was placed to low on both arms….so, in what can only be described as a huge moment of either delusion or bravery, I let her do the IV with full sensation….granted it was only a 22 and it was in my forearm…but I did it.  I don’t want to do that all the time, but it’s huge for me to be able to say I did it.  I stepped over another fear mountain.  Back to my room, to pull myself together for the day, eat some breakfast and prepare to get pre-infusion drugs.  (PS…I cannot speak highly enough of the care at the NIH on the oncology floor…the nurses are incredible…and they truly love what they are doing.)

My infusion head nurse was probably my age, maybe a little bit older.  The time had arrived for the Tylenol and massive dose of Benadryl….I seriously have found the Benadryl to be the worst part of infusion day.  It just makes you feel horrible and I am one of those that it doesn’t make sleepy…it makes me tense.  Not a fan, but it’s necessary to help prevent infusion site issues.  11AM.  Infusion started.  This cycle, I didn’t even glance over to the to the bag.  Not one time.  It’s infusion rate was increased twice per protocol, and soon it was over and the line was cleared…and it was done.  I ordered a small lunch and then spent the better part of the day trying to recoup from Thursday OR day.  Anesthesia just isn’t a friend to folks my age, and two visits to the OR in three weeks..well…not a fan.  The teams came by to follow up on Friday and then my Princess came on shift.  Princess….I still just can’t begin to express the joy she oozes. She stands at the computer in my room and she is singing while she charts and scans.  Seriously….how can that not make you smile?  Princess walks in, and her first words to me this visit, “Ms. Kim, you look tired.  Let’s take your night meds early.”  “Umm….can we try to wait to normal time?” “Now, Ms. Kim, I’ve been doing oncology floor for 12 years…you need to trust me on this.”  I did…and she was right.  Sometimes, there is no shame and no defeat found in fighting what your body wants to do. She helped me to see that asking for Zofran wasn’t failure…it was me realizing that what I am doing is not easy, it has consequences.  Princess is so funny….she let’s me sleep once she gets that 10PM vital…sorta.  She cracks the door occasionally throughout the night…just barely peaking in….I will miss her…and honestly the entire NIH staff when this trial is over or I am removed.

Saturday came.

 

Saturday:  Even though you know it’s “go home” day…until you know that the final check  has been marked on the discharge orders and final IV removed..nothing is certain.  With my bag packed, some resemblance to looking human having taken place by simply putting on regular clothes and shoes..it was time to head back to DCA for a flight to Chicago.  In this visit, I had been cared for by women from such diverse backgrounds.  The unit already knows me….and I was able to meet some of the other patients in the unit on other trials.  People, where this is their “Hail Mary.”  That’s strength…at least it is to me.  To see people walk the hallways that I am sure had rather be in bed…but they put one foot in front of the other and they walk.  I learned I seriously want a purple, satin robe…what strength that robe spoke as that patient walked by.  Nausea is real this time.  I don’t know why I expected to escape side effects….but I did.  Today is better…and I am hopeful that trend continues.  I know the fatigue is coming….should be here Thursday….and it’s manageable and I am prepared this time…I won’t be caught so off guard.  As Princess told me, my immune system is at war right now.  Sweets sound and taste horrible now.  Things that aren’t sweet, taste sweet.  I never thought a day would come where I would walk past cake or a dessert menu without even a glance.  That day is here.  If this works….flip-flopped taste buds…a small price to pay.

 

Closing:  I head back for an infusion/clinic only visit in nine days.  No OR this next trip.  My body is so thankful for this break from the OR.  I’ll go back to the OR on the visit after next, but I plan to enjoy anesthesia free existence for a few days.

Now back to fear and anxiety.  A few people knew what I was doing on this visit….I did this entire week solo.  On my own.  Just me…and me.  I had such a confidence in my care, and I honestly don’t want Lee using all of his vacation time sitting in a clinic or hospital….I went rogue…solo.  I cleared it with the team before I made the final decision.  Today, knowing that I can do the OR, clinic, infusions…all of it…with confidence…solo…..I can’t begin to express the wave of relief over my entire mind.  I needed to know that I could handle my health solo.  I do so in clinic settings already, but this visit..I conquered that last frontier…could I do it if there was an OR visit…could I do it on infusion day…could I make it to my gate at the airport….and I did.  There were incredible friends who prayed and checked on me all week…Lee who has learned through the years when to be there and when to just sit.  Now, Lee is coming on March 6th week.  That’s a big week in the trial and one that we both need to be part of.  Today, this past week has me thinking of my Mom and my Dad….and my Granny Louise…and my Granny Page-the people that gave me this incredible gift of independence.  I wish I had known it was a gift at the time it was happening….it’s only as a much older adult that I can look back and see how certain events and lives modeled…influenced me.  There’s a power in knowing you can do your life solo….and a joy in knowing that for whatever the reason, God has said, I know you can…but you don’t have to. A spouse that understands that unique wiring I possess and allows me that freedom to soar independently when I feel I need to-I get to make that choice as different things come and go in life.

The countdown is back on….to Week Three, Cycle One.

Oh….in other news..while in Bethesda…my son was notified he was awarded a Fellowship for the summer at AMF and my daughter turned 30 and headed out for a Waco adventure.  Thankful for kiddos that know how to soar..who take leaps of faith much more often that I could have ever dreamed for them.  They teach me….and that’s just cool.

I didn’t load any pictures into this blog post.  I am guessing a picture of my very bruised left hand isn’t necessary…I loaded some of them on FB and that’s enough.

PS, I did find that going downstairs to get “real coffee” in a robe and pajamas is totally ok….now if I could just get the same acceptance of that at the grocery store.

 

So many words, yet none come out

I sit here thinking today would be a great day to update on my Avelumab journey.  For tiny glimmers of hope seem to be occurring….

And then…my mind races over to what can only be referred to as a Civil War amongst Christians in America.  My heart aches.  I’ve chosen my side….and there will likely be a cost.

I get up, thinking maybe a refocus is what I need….gather my thoughts while working on my Bible study.  Yet, I sit and concentration, focus isn’t there….my mind drifts to the pictures of children desiring refuge, parents unable to be with their sick child….and my time sitting with a neatly published Bible study seems so cheap, so fake.

I don’t dare turn on cable news….choosing to gather information from true journalism…those that investigate what is occurring around us.  And it’s literally a bombardment of facts…..coming so rapidly, how can anyone come up for air to just get a time out from the chaos developing-the talks of war.

So, I come back to the keyboard.  Celebrating my tiny health milestone seems petty.  It seems almost cruel to cry out in celebration over my tiny steps, when I think of those just across an ocean or even in my own state…that cannot gain access to what I am so fortunate to have access to.

A world is crying out for hope…..and all I can see as I sit here today are grenades being tossed by those meant to share hope.

So, I sit.  All I have to today is the offering of what I know to be true.

Jesus, loves us all….and we are all created as equals in His eyes.  Monetary gain is earthly, but a heart that is so open to others, well, it’s an unending treasure chest.  I sit on the promise that I know Christ is so vast, He does not need any government making him the law of the land-nor does He want it.  He reigns as King…period.

Maybe that is all today is for…my sitting on that promise of who He is and what He has called me to do…..and not to do.

 

 

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….