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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Surgery Ain’t for Sissies and Christmas Miracles

The title says it all. “Surgery ain’t for sissies.”  Whether going in for a small procedure or a mid-level procedure or one that requires an extended stay in the hospital, surgery knocks the wind out of the sails.  Period.

I have waited to post this update, mostly due to feeling as if someone had taken a four-wheel mud ride inside my throat and airway and wondering if typing any words at all while on Oxycodone was a wise decision.  (Surely, it might have been funny to see what I would have written.)  Tack on a little respiratory infection coming for a visit, and today, well, today is the first day I think I should type any words to be saved for prosperity.  .

Mayo had  me come in a day early for some pre-op testing and consultations.  One of those consultations was with the anesthesia team.  Normally, anesthesia is that person you see the morning of your procedure and briefly as they tell you “night-night” while injecting the “good drugs” into the IV line.  For this anxious girl, this meeting was the one that I was able to ask questions and they were able to make the notes necessary to make everything the day of surgery proceed seemlessly.  To know they were just as concerned about my anesthesia side-effects as I was….well, that’s huge.  Permission to drink clear liquids up to two hours before the procedure, even better.  It’s the little things that make the biggest difference for any patient.  They were very attentive to those details and it has been my experience at Mayo for the most part.  The patient comes first. A script for Ativan to take the night before to calm any nerves and it was time to have that “last meal” and prepare mentally for the next morning.  (Chester’s is still my favorite place to eat in Rochester…yummy!)

5:30 AM check-in.  The process is seamless at Mayo and it was literally minutes until I was back into the room that I would be taken back to after surgery.  Various things going on around me to prepare the nurses, the room and myself for the day.  Getting shorts to wear to surgery-awesomesauce.  Being told that I could go back to the OR with my glasses on and with my earbuds/iPhone for music-can we get an Amen!  Then when it was time to go back to the surgery department-being able to walk like a normal, healthy person.  I can do this!  Pre-op was even more efficient.  I was sitting up in the holding bed-another little touch that can make a huge difference, while nurses went over the various questions and anesthesia started the IV.  During IV prep, another nurse was making impressions of my teeth for a custom guard-yep, I needed that about thirty years ago-teeth and a lifetime of surgery do not go together.  Then the Head/Neck doctor made a stop by and I was quickly taken to the OR suite.  Less than ten minutes later, my awareness of anything going on was gone.  I awoke in recovery and was quickly released back to the floor where I would spend the rest of the day.  Due to how well I had done, I was being released to the hotel the same day!

I do not say this lightly, this was the best surgery experience that I can remember.  From Thursday-release, I cannot think of one thing I would want done differently.  The biggest praise for me is that I did not get sick…not one single time.  I can’t even think of a time I felt queasy.  This is not my normal pattern, so I am so grateful to the team for each process they put in place to limit this side-effect.

Friday evening-Sunday evening was tough.  I slept most of the time and dealt with some details from surgery that I will just leave off the blog.  Monday came and it was time for the post-op visit and hopefully that phrase, “You are free to go.”  The pain was still fairly even from the prior two days and eating was still a challenge as well as drinking, but it was getting a little better each day.  The doctor went over everything that took place in the OR, along with awesome pictures.  Biopsy results from the larynx and tracheal area would be ready by Tuesday at the latest.  Having a PET scan with a SUV value of 14 in the trachea, I knew it could go either way.  The doctor knew it could go either way as well.  He noted that he did not get everything in the trachea due to the large volume and would have me return in January to complete that area as well as see what my body was doing with the scar tissue.  The lung biopsy did not take place due to the bronchial scope being unable to reach any of the sites.  That will be a procedure on its own in January as well.  Just like that, we were on our way back to Wheaton.

I guess we were about two hours into our drive back when the doctor called.  With excitement in his voice, I got the all benign, squamous cell papilloma!  It would be several days later, that I could let that soak in and realize I had a positive PET scan, changes in the area and my biopsies came back benign.  God took care of this for me.  I know that He did.  I’m not in the clear 100% yet, but that phone call was a huge step forward.  There are still some questions about possibly missing the carcinoma at the base in the trachea, but we will cross that bridge in January.

Once home, I was given the gift of blessings by women I have met in our short time at WBC and in small group.  These women have shown me such love and compassion.  A little back track here.  The Bible study date before surgery, these women covered me in prayer like I had never experienced before.  I will never forget their hands, their prayers, their tears as we prayed for peace, healing, protection.  I know with every fiber in me that those prayers were answered.  I am here today looking at systemic therapies that are far less toxic than those I would be facing if these samples had come back carcinoma.  More than that, I walked down that surgery hall with confidence and peace.  My family covered me in prayer, friends from East to West, everyone that had any knowledge took the time to call out to God on my behalf.  For that alone, I am the richest person in the world.

Recovery took a solid three weeks.  I am amazed that I actually used to have surgery as a kid and would eat a hamburger that same day and be back at school usually within 36-48 hours.  Surgery ain’t for sissies, and it’s certainly not for us “At Your Age” gals!

And now, for the Christmas Miracle.

Surgery was performed to create access for instruments for biopsies and debulking.  I was never, not even once, given any hope or indication that I would gain anything back more than possibly a stronger whisper for my voice.  The goal was to simply determine if I had converted to cancer and create access for the instruments that would be used for that purpose.  The only hope was that in this, I would possibly gain some relief from oxygen-deprivation headaches.  Now, imagine my surprise when about four days ago, something louder than a whisper started to come out.  It’s not easy to do, as I have truly forgotten how to speak, but when I concentrate, there’s a voice.  Those who have known me for the majority of my life, well, they are saying it’s the voice I had in high school.  I don’t remember.  My son has no memory of me with any type of voice, and my daughter only has a scant memory of one.  I don’t know how long it will last, or if it will even come back after the next procedure…but for now, when I really try, there’s a voice. I have woken up each of the past few mornings and the first thing I do, well, is I try to speak.  This, based upon all that I have been told by more than one Head/Neck doc, really is my Christmas Miracle.  My vocal cords are so damaged, so stenosed, that a voice shouldn’t be possible.  I am trying so hard not to think about what happens when it leaves….because I cannot explain the elation I have felt being able to order my own meal in a restaurant.  Not having to depend on someone else to speak for me in that setting.  Simply being able to talk on the phone for brief periods of time without getting a headache or the person on the other side hoping they heard me correctly.

I can only give the credit to God today for everything. He lead me to Mayo. He carried me into that surgery suite.  He heard the prayers of dozens on my behalf.  So, for my Christmas miracle, I am grateful.  I think if I can have it long enough for the babies to hear their Mimi, for my Josh to be able to remember his Mom with a voice, and for me to remember not to take something so normal for granted…..then I have had the voice long enough.  I am going to work so incredibly hard to not beg God for more days with a voice, but ask Him to keep me focused and while I do have a voice that I use it to honor what He has done….not anything else.

Many of those who know this story have asked to hear my voice.  I still don’t know if I am going to make a public post with it.  The last thing I want to do is draw attention to me, when folks, anything greater than a whisper is God. Period.  It’s that simple.

So, this is my Christmas Miracle.  Recovery still has a couple areas to work on, but I am well on my way.

“He performs wonders that cannot be fathomed, miracles that cannot be counted” (Job 5:9)IMG_1753

Fantastic Friday-Emma’s Story

I have been so excited to share about this precious girl.  Emma is a ROCKSTAR!  She’s beautiful and has such tenacity.  Her Mother, Katie, was so kind to share Emma’s story and some amazing pictures for all of us.  This precious girl is the reason the RRP Foundation raised over $5000 in record speed this early fall.  For a rare disease, that’s an amazing feat and Emma is the reason!  She started the campaign! Here’s Emma’s story, as told by her beautiful and brave Mom, Katie.

This is it. It started the campaign.

This is it. It started the campaign.

My beautiful daughter Emma was diagnosed with RRP at the age of 5½. She very suddenly became hoarse and we could not get her voice cleared up. Her family doctor kept insisting that I just needed to give the steroid he had prescribed more time to work, but after 3 weeks and her voice only getting worse, I knew in my heart something was not right. I started to research hoarseness in children online. I found that one of the most common causes of persistent hoarseness in children is RRP. I knew right away that that was exactly what my daughter had. I had just been diagnosed with cervical HPV causing cervical dysplasia about 1½ years after Emma’s birth, so I knew my suspicions were most likely correct.

This Mom....so strong.

This Mom….so strong.

I took it upon myself to set up an appointment with a pediatric ENT for my daughter. I told him of my own HPV history and told him that I was positive my daughter had RRP. He passed a scope down her nose that same day and confirmed that Emma had something growing on her vocal cords. He said that she would have to have surgery so that he could get a better look and biopsy the area. My heart sank because I already knew.

It was confirmed that Emma had RRP on October 20th, 2011. This is easily the worst day of my life. The doctor proceeded to confirm the diagnosis in a public waiting room where I completely fell to my knees and could not be consoled. I was led out of the waiting room by my Mom and Husband to a bathroom where I collapsed to the floor and cried. After several minutes of uncontrollable crying, I pulled it together because I promised my little girl I would be there when she woke up.

Emma.....recovering

Emma…..recovering

This is recovery.

This is recovery.

Today, Emma is 8 years old and she has had 10 surgeries. Her vocal quality is much better than it was after her first two surgeries, but it is still a struggle for her just to speak and endure the many surgeries she must undergo. Since her first doctor knew so very little about RRP (like most doctors who have never even heard of the disease) we were forced to seek out a doctor that was more knowledgeable about RRP. After a few disappointing “second opinion” visits, I finally decided to contact one of the most knowledgeable experts on RRP in the US, Dr. Zeitels in Boston. I was concerned about the distance we would have to travel and the financial burden it would ensue in order to get her quality care, but I was willing to do whatever it took to get my daughter the best care possible. When I called, they were very supportive and told me they understood my frustration of trying to find a doctor that could help my daughter. They said there was actually a doctor a little closer to where we live in Ohio by the name of Dr. De Alarcon. He had worked with Dr. Zeitels and followed very similar protocols. When we met with Dr. De Alarcon we were overcome with relief to finally be  in the hands of a surgeon who knew how to treat our daughter’s rare disease and still manage to give her the best vocal quality possible. He has performed 8 of her 10 surgeries and has given her quality of life back, which is one of the greatest gifts ever. I don’t know if my daughter would even have a voice at all if it weren’t for him. He is certainly my hero.

Even though we have finally found the right surgeon for our daughter, the burden we feel from this awful disease inevitably persists. Traveling every 8 weeks to Cincinnati Children’s Hospital in Ohio has been physically, emotional and financially burdensome. It is roughly a 4 hour drive one way for us. Sometimes we have to leave as early as 2:00 AM to be there for our surgery times. It doesn’t help that they are in a different time zone than us. Then, by the time surgery is over, we are so emotionally drained, that the 4 hour drive back is a fight to stay awake and make the drive. We have stayed at a hotel for one of the surgeries, but then you have the added cost of the hotel. As it is, we have to pay $4500.00 out of pocket each year before our out of pocket expense is met for insurance to start paying 100% of the medical costs. This is roughly the same amount of money I see many of my friends using yearly to take a nice family vacation. Emma would love to go to Disney World, but instead, our money has to go to paying her medical expenses. We pray and hope that we can eventually save enough extra money to get her there before she is too old to enjoy the innocent magic this childhood favorite has to offer.

A Doctor's Pro

A Doctor’s Pro

Emotionally speaking, this disease has certainly challenged us on many different levels. When Emma was first diagnosed, the guilt I felt was overwhelming. I did not know how I could ever forgive myself and learn to live again. My grief was so dark and I was so unreachable. I often found myself wanting to fast forward my life to see how all of this turns out for her.  I thank God for my wonderful Husband and supportive family who never gave up on me in my darkest moments. I endured extreme grief and depression for almost 2 long years before finally finding an antidepressant that helped me cope. I thought about suicide often, but knowing my daughter needed me was what pulled me through.  She needs me to be there for her through this lifelong journey she now must endure with this awful disease. I will continue to pray for her, for a cure, for everyone affected by this awful disease daily, and will fight to get her the best treatment possible until the day I take my last breathe.

As for Emma, she never fails to amaze me with her strength and amazing courage. She is such a fighter. She is determined to make a difference! She has made her very own challenge in response to the ALS ice bucket challenge. She has challenged 1 million people to donate $1 to the RRP Foundation to help fund research for a cure. Her thinking is quite simple, if 1 million people donate just $1, a large amount of money can be raised without placing financial burden on any one person. I think it’s a beautiful concept and great goal for her to work towards. (Her challenge can be found on Facebook at https://www.facebook.com/Challengerrpdonation )

This is not to say that Emma has not struggled despite her astounding strength. She is always very nervous for her surgeries. She says she is scared she won’t wake up from the surgery. Hearing this breaks my heart. When she does wake up, she is in so much pain and then must be uncomfortable the whole 4 hour drive home. She can’t talk for at least 5 days after surgery, which is very hard especially when she has to go back to school. She is constantly asked by people what’s wrong with her voice, if she has a cold. She used to tell people about her disease, but she was tired of the funny looks she got from trying to explain. Now she just tells people that’s just her voice, how God made her. Just recently, she has been getting made fun of by a few kids a school. Thank goodness she has some really good friends that stick up for her.

Seriously, how adorable.

Seriously, how adorable.

In all that we have been able to tell Emma about her disease, we have not told her that the disease could one day take her life if it spreads to her lungs. As she gets older and will soon be using the internet, I know this is something she is eventually going to find out. It’s a worry you never want your child to have. Although spread to the lungs is rare, it is something we must never let stray too far from our minds. Staying up on her medical care is critical. We will continue to strive to give our daughter the best medical care possible regardless of the price tag. We just keep holding on to hope that a cure will be found. In the meantime, we take it one day at a time.

While we breathe, we hope.  Two thumbs up!

While we breathe, we hope. Two thumbs up!

In the last 3 years since Emma’s diagnosis we have found grace in the darkness. We have learned to live a “new” reality, to take advantage of every good, surgery free day. While we wait for a cure, we will continue to give Emma the best life possible between surgeries and love her and support her in every dream she has.

Such beauty and bravery

Such beauty and bravery

To close, I am going to ask that we all share this, press this, do whatever we can to help Emma reach her goal. She has shown so many of us the power of one….thanks again to Emma’s Mom for sharing her heart and Emma’s story.