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.

 

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….

 

 

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.

Not Twenty Anymore…..

First, it’s official. I do have a heart!  (This is a joke between Lee and I, due mostly to my complete lack of a romantic heart.)  Again, though, I have a heart. I saw nuclear images of it!

A Heart

A Heart

Now, on to the blog…..I am not twenty anymore and if the current list of doctor appointments isn’t enough to remind me of that, a nuclear stress test was a well-played “gotcha” by those above wishing to remind me of said fact.  (We will leave out the new aches that seem to pop up daily now.)

“Stress Test” sounds simple enough.  No caffeine or chocolate for twenty-four hours and NPO after midnight the night before test…easy.  No other prep required.  No barium to drink, no cleansing process to deal with….piece of cake.  That should have been my first clue-the thought of “piece of cake.”  I’m that patient who can and does experience every side effect ever documented…..toss in what a lifetime of surgery does to your veins…and voila…..here comes my day.

My day began at check-in around 8:30.  I was soon taken to the back to start the IV that would be used to administer the drugs for the day. I was very forthcoming about my fear of IV’s and the scarring in my veins.  I strongly suggested ordering a local to help the process.  Thirty minutes later after an unsuccessful attempt to thread the IV and several tears down my face due to pain,  we stopped the process.  The person placing the IV did a great job-she was in on the first stick….it was me and my scarred veins that presented the issue.  Fast forward to the Cardiology RN being called in and finally the light-bulb going off that “we need a local if this is going to happen today”.  Call made to doctor for order, wait for it to come up to the office, and five minutes later-IV in.  (I cannot express in words the pain that is felt as an IV is thread past scar tissue.  Get a local.  Give a local.) Next she administered radioactive contrast and I began the one hour wait until first set of pictures (resting pictures).  At this point I was able to enjoy some water and wonderful crackers.

Finally!

Finally!

Resting pictures are then taken of your heart while laying on your back (very still) for about fifteen minutes.  Enjoy the little nap.  From there, in my case, it was on to the exercise room where I was given a lovely injection of Lexiscan.  (This was a chemically induced stress test.)  Before the injection, vitals were taken and I was told of the “possible” side effects.  Outside of the sudden cardiac event, I was able to enjoy every single one. (Sarcasm) Imagine running a mountain at full speed, realizing you need to stop for a break and somehow your legs don’t listen and you keep going…..that’s what Lexiscan does.  If that is anything close to what a heart attack feels like, I do not ever want one.  The shortness of breath, the pounding of your heart, the pain in your stomach, the leg cramps, the nausea (yes, I got a blue bag to hold), the room getting so incredibly hot….and then comes the headache.  Not a fan.  The bulk of the “stress” lasts about three minutes.  I felt pretty wiped out the rest of the day and it took a good while for the headache and stomach pain to fully leave.  Again, not a fan.

From there, you are monitored until your vitals return to normal and then you are given some caffeine to drink (and the Angels in Heaven rejoiced) and sent back to wait for about an hour.  At that time, another set of images is taken showing the “stressed heart.”

All said, from start to finish, it’s about a 3 1/2 hour process.

To quote my doctor today-“They let you leave the hospital, so there must not have been anything major seen.”  So, with that reassuring statement, the wait begins for the official report to be compiled by the cardiologist and sent over to my ordering MD.

There’s a strong family history of heart disease in my family tree, so there is a small part of me that does carry some concern, but I am thankful that this test is done and over and we will soon have a pretty good idea of the condition of my heart.  After so many surgeries for RRP, my heart health has been something of conversation before now.  What toll has my heart taken due to surgery?  What toll has a lifetime of strained breathing placed on my heart?  Now, we will have that snapshot.

I’m not a fan of Lexiscan and I hope to never meet her again.  She was not very nice to me!  I am a huge fan of Northwest and I am more than confident in the level of care we have with the Cardiology group there.  It’s nice knowing if something was to be wrong, I don’t have to travel to get a high level of care.

So, that’s my Nuclear Stress Test review and the announcement of the fact that I DO have a heart!!!  Now that heart may never be one that wants candles and flowers and all that romance stuff…but it’s there and it is beating!

(PS-how does one follow up a test to show the health of your heart?  Why with Freddy’s for dinner, of course.)

Morgan’s Story-Determination and Hope-You Are More!

Today’s “Fantastic Friday” RRP story is a feature on Morgan Toll.  I feel such a special connection to Morgan as we are both from the same area, have a story that really isn’t that far apart, and I know pieces of her family….she’s special and I hope you enjoy her story.  This is Morgan in her own words and I am so thankful she agreed to be the first story!  She’s amazing and it shines through! 

Little Morgan

Little Morgan

I was eight months old when I was diagnosed with RRP, from then on, until I was around 12
years old, I had over 200 surgeries. The doctors said I had one of the worst cases they
had ever seen, having to go into have surgery every week, as if it were routine. I was young
and because I had grown up this way, it was all I ever knew. I never saw my illness as a
tragedy; I saw it as my life because I never knew anything different. So brave

I’ve heard stories from my parents about how I would pass out, turn blue, and have to be
rushed in an ambulance for immediate surgery, or how the hospital once didn’t have the laser
to remove the papillomas, so I was put in an induced coma for a week to stay alive. Now
when I hear those things, it tears me apart because I can not even imagine how my parents
must have felt, feeling like they were losing their baby girl to this awful disease. I can tell
you that I remember the grape smell of the mask right before surgery, the toy room, and my
anesthesiologist that would perform magic tricks to calm me down. I remember my mom
and dad crushing up the Popsicle for me after surgery so I could eat it. I remember them
crying right before I was being pushed down long hallways as I spoke to my doctors, and
then, everything going fuzzy right before I fell asleep. When I was six, I went in for a check
up and they said I would go into cardiac arrest because not enough oxygen was getting to my
heart. I had to have an immediate trach put in. I remember them bringing in a puppet to
explain my surgery, but I didn’t really understand. Afterwords, I stayed in the hospital which
seemed like forever.

Beautiful Morgan
The trach, for me, is what set me apart and made me start realizing things were different. I
wasn’t allowed to do certain things that I used to be able to do, like going swimming or
taking showers, or playing in the sand. Every night I was hooked up to multiple upon
multiple machines. I remember it scared a few of my friends, and they didn’t really want to
sleep over anymore. I knew I was different and I didn’t want it anymore.
When I was ten, I saw a doctor in Colorado that began to change everything for me. He
started injecting the mumps virus into the papillomas which began making them disappear. I
also I had a rib graft done, where they took a piece of my rib and put it in my throat to
reconstruct the airway.
Soon after, the trach finally came out.
It was a miracle. I, one of the worst cases the doctors had ever seen, was being put into
remission. I could finally be a “normal” kid.
Even though the disease had disappeared from my life, it seemed to follow me.
My voice became the only concern in my life.
The constant questions and people thinking that I was sick became so ordinary but
the number one thing it has held me back from, is the one thing I love most, acting.
From the time I was small, I knew in my heart that being on stage was all I ever wanted to
be. Which is really ironic, given the circumstances I was in, so of course, everyone always
told me that it was not possible. In highschool, I felt like I had given up hope; I started to
believe everyone around me and believed that I couldn’t do it. So I pretended that it didn’t
bother me, that I never wanted to act, that I wanted to be behind the scenes. Her Dream
I watched as people around me got parts, didn’t memorize their lines and fooled around. I
stayed behind the scenes, watching as others did what I wanted to do most of all. Then when
I went to college, I took an acting class which was required.
We were all paired into two and had to do a scene. Mine was a scene from the play “The
1
Beautiful People” and it was dramatic and beautiful, but I was terrified. I didnt want to act in
front of anyone, I didn’t want people to make fun of my voice.
Once I had performed the scene though, I was hooked again. I knew I couldn’t give this up,
not anymore. I became a part of an acting group in the school, and began performing in play
after play, and taking as many classes as I could, working as hard as I could, wanting to learn
as much as possible about this wonderful craft that I love.
People were still telling me that I couldnt do it, telling me the only characters I could play
were sick ones, but I stayed strong and refused to listen.
I didn’t let this disease I once had take control of me again.
In my third year in college, I auditioned for the play “Fools” and I got the lead. It was the
first time I felt like I was getting the chance to prove that I could do this. Not just to people,
but to myself. Members of the acting group tried to kick me out of the play, they said I
couldn’t be the lead because no one would hear me, I fought back again and even more.
The first night of the play, in this small theater, the audience was packed. People were sitting
on the stairs and some had to be sent away, it was crazy. I was so nervous, but felt this
energy inside me that bursted out and led me throughout the performance.
When it was over, everyone began to applaud and stand up. My eyes started tearing up. I did
it, I stayed strong and proved that I can do this, and it was amazing.
Nobody could understand how much this silly play meant to me, and I would hold onto that
feeling for the rest of my life.
Then, last year, things started to change again. I started feeling shortness of breath and my
voice was getting weaker than usual.

Life Changes
I went in to see a doctor and wondered if there was any way I could get my voice fixed, after
being in remission for so long.
The doctor told me that my airway was narrow, the size of a three year olds, and that there
was no way to ever fix my voice. That I would never speak normally again.
It was a lot to take in. It was a hope I had in the back of my mind that very quickly started to
crumble.
I started seeing more doctors because of my airway. No one understood how it was getting
more narrow all of a sudden. The scar tissue, due to all the surgeries I had, was somehow
beginning to grow. I worried about having surgery, worried the papillomas would come
back if it was messed with, worried I would lose my voice all together.
I started going to the emergency room because I was feeling more shortness of breath. Soon
after, I decided to go to a doctor in Boston who chose to remove part of my vocal cord and
open my airway more. The surgery had successful results, but it did not last very long. After
I flew back to California, the scar tissue grew back, making my airway even smaller than it
was before. I became ill with pneumonia and spent three days in the ICU and on the fourth
day, I had to fly back to Boston to have another surgery. My breathing was getting worse and
worse; just getting up out of bed or walking across the room would cause me to be
completely out of breath.
Two months after my surgery in Boston, I went in for a check up at Johns Hopkins in
Baltimore and they told me I would have to have an immediate awake tracheotomy and I
would not be permitted to leave the hospital without one.

And It Was Done
My whole world seemed to shatter in that moment. I was so scared, it was happening so fast
and I felt so alone. I couldn’t believe this was happening all over again and I didn’t
understand why, yet I knew it had to be done. Today I still have the trach, and my doctors are trying to figure a way for it to be removed eventually. I currently have zero vocal cords but I still have my raspy voice.

Despite all that though, I am okay. I am actually more okay now than I ever have been. I can
breathe, and let me tell you, people can really take advantage of the whole breathing thing
because you don’t know how amazing it feels to breathe that very first deep breath for the
first time after not being able to breathe at all.
I have come to terms with my illness.
I know that it is all in God’s plan and no matter what happens, it will all be ok.
A lot of people might think that I am weaker because of all of this, but i feel so strong.

I am strong because I’ve spent my whole life battling this,
I am strong because I refuse to let someone tell me that I am less than because of it,
I am strong because I refuse to give up,
I am strong because every single day I am so thankful to be alive and breathing.
I am strong because I have God in my life, right beside me everyday, telling me that it’s
going to be okay.
I of course have my days where my heart breaks a little because of the things this illness still
holds me back from, knowing I may never be on that stage again. But what keeps me
together is that strength, the strength that tells me that no matter what, I am never going to
give up.
That’s what I try and share with everyone. I want everyone out there to know, anyone with a
disability, an illness, or a feeling like you are less than, I want you to know that you are more
than you could ever imagine. You are more.

A Woman of Determination

Normal is Boring!