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.)

IMG_5328

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….

images-1

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

images