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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Peace on Earth-Ferguson

RACISM: 

noun
1.

a belief or doctrine that inherent differences among the various human races determine cultural or individual achievement, usually involving the idea that one’s own race is superior and has the right to rule others.
2.

a policy, system of government, etc., based upon or fostering such a doctrine; discrimination.
3.

hatred or intolerance of another race or other races.

Injuries from firearms send an estimated 7,000 kids to the ER every year, and an additional 3,000 children die from gunshot wounds before they can get to a hospital, according to a new study published in the journal Pediatrics. Doctors are pointing to the new data as further evidence of the serious public health toll that gun violence takes on America’s youth.

The new study drilled down some of the data from a 2009 survey of kids’ pediatric stays. That year, the majority of kids’ gunshot injuries — 4,559 — resulted from intentional assaults with a firearm. An additional 2,149 were accidents, and 270 were suicide attempts. About six percent of the children who made it to the ER ended up dying in the hospital from their injuries, which are typically open wounds, fractures, or brain or spinal injuries.

“This study reinforces what we know from the mortality data,” Daniel Webster, the director of the Johns Hopkins Center for Gun Policy and Research, told NBC News. “We have an extraordinary health burden in our youth associated with firearms injuries.”

Webster pointed out that the United States’ rate of mortality from firearms is about ten times higher than the rates in other wealthy nations. “This is a very unique and abnormal problem that such a wealthy nation should have such high mortality and morbidity in youth related to firearms,” he noted. (Think Progress)

The total number of gang homicides reported by respondents in the NYGS sample averaged nearly 2,000 annually from 2007 to 2012. During roughly the same time period (2007 to 2011), the FBI estimated, on average, more than 15,500 homicides across the United States (www.fbi.gov/about-us/cjis/ucr/crime-in-the-u.s/2011/crime-in-the-u.s.-2011/tables/table-1). These estimates suggest that gang-related homicides typically accounted for around 13 percent of all homicides annually. (National Gang Center)

And all of that leads this blogger to today’s posting…Ferguson.

Racism is alive and well.  Whether it’s directed to a black kid on the streets of St. Louis or a Hispanic kid on the streets of Houston or a white kid who attends a predominately minority school….it’s alive and well.  To say otherwise, is an insult to those across the world who deal with prejudice on a daily basis-whether it’s self-inflicted or not does not matter.  We, as humans, judge one another by the color of our skin, the size of our checking account, our gender….it’s wrong…yet, we have all been guilty of prejudice at some point.  We have all been a victim of someone’s prejudice towards us at some point as well.  For the vast majority of us, that prejudice was fleeting-a one time ordeal.  We cannot understand what it is like to live in world that every single day you are judged by the color of your skin.  As a white female, I cannot understand what it is like to get pulled over just because I meet some “profile” of a “typical” offender.  I won’t pretend that I do.  I also won’t pretend it doesn’t happen.  So, yes, racism is here.

I copied the information regarding gun deaths to children and deaths to gang members to show that maybe we are fearing the wrong thing…..gang members are killing far less than I thought they were-I had just assumed due to the media hype the numbers would be staggering….they are in that one life lost is too many….but statistics clearly show the vast majority of homicides in this nation are not committed by gang members….but by human beings that decide to kill. Not kill to protect, but to kill because in that moment they did not value human life.  And maybe, just maybe that’s what Ferguson is really about.  A community that has a small percentage that does not value human life.  A small percentage that has become so consumed with anger and hate that rational thoughts and behaviors are no longer the norm.

A police officer, on that given night had to make a decision.  Was he in danger?  We do not know what it is like to patrol an area where you are hated, not wanted….yet…this man…because of his call to public service patrolled that community where he was not wanted.  A man that has probably replayed that night a thousand times in his head….second guessing every single move he made.  Yet, in that moment, was he in danger?  I think the facts clearly state that he likely was.  From there, things seem a little murky, but we have a judicial system in this nation and that grand jury was given more information than most grand jury’s get.  Was there probable cause? No.  An officer of the court made a snap decision on his safety and the safety of those around him.  That’s their job.  He had never fired his weapon before on duty.  A grand jury must find probable cause.  In this case, it wasn’t there based on the evidence and facts presented.

And then our President addressed the nation.  Facebook feeds were firing away.  And then, this little blogger who is just one voice in a sea of millions had that lightbulb moment as she read what people were saying about Ferguson, about our President, about all of it.  We are a very angry nation-of all colors.  We are a nation that has lost respect for authority and for the office of the President.  (I didn’t say we had to like or agree with the President, but there is no respect for that office anymore.)  We don’t respect our public servants, we don’t respect our teachers, we don’t respect one another.  Is it any surprise when you accept that fact that we have a small percentage of a town tearing it into pieces?  We are an angry nation.  We all want to be a victim.

So, this little blogger’s answer is this-let’s cover our nation in grace.  We need grace in abundance.  We need to raise our children to see one another for who they are-not what they are.  We need to be a nation that respects our public servants and our leaders, even if we don’t agree with them. We need to teach our children to respect their community.   We need to teach all of that, model that.  Anger serves no one when it is allowed to fester into what we are seeing in Ferguson.  That anger isn’t about one kid…..that anger goes so much deeper.  We need to teach the value of human life…and maybe that means taking away Halo, or Call of Duty or whatever has caused so many to view killing as an act with no consequences.  We can’t just treat the branches of the tree that is broken….we must address the problem at the root.

Today, we pray for Ferguson and every community in America that is like her…and for one another.