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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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….