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.

Really Big Needles

I am not a fan of needles.  I mean, really, who is?  If you are, I’m sorry, we just can’t be friends.

Most of you guys have been following the saga of my lungs and such for almost two years now…crazy…almost two years.  One would think that I would be further along in this little journey, but slow and steady is my mantra…plus, I’m a classic over-thinker, and I have way too much access to google-ya know, Dr. Google.  Anyways….I did it.  I pulled that trigger this week and admitted that two spots were likely better off identified than left hanging out to their own little march.  I had a lung biopsy.

Both lungs have several areas, but on the left are two decent size nodules that I think show out to put the right side to shame….should I tell them that I like the right side more because it’s not a show off?  Nah….they would probably act out like a two year old by going all ninja on me….we will just let them keep thinking they are the belle of the ball.  So, the left side was the focus this week.  Decision was made to go after the one that was easiest to reach.

I have to say that once the team and I made the decision, outside of panic moments that occurred when I went to Dr. Google….I was fairly calm about the whole process.  Thankfully, I have some folks who have walked this road already and they were so awesome to answer questions and give me “real world” experiences.  Whether the biopsy came back papilloma (Squamous Cell) or cancer (Squamous Cell Carcinoma), I pretty much already had my plan in place and knew what to expect either way.

So, off to Mayo I went.  As with any other trip to Mayo, it began the night before with dinner at Chester’s.  Seriously, it’s good eats.  Now….imagine my heartache when I realized my favorite menu item was no longer on the menu!  I may or may not have whined to the waitress more than once.  She encouraged me to order the Lobster Mac-N-Cheese and it did not disappoint.  Now..was it as wonderful as my Thanksgiving Dinner on a Plate I had come to love…why of course not.  You guys know I love Christmas…. Thanksgiving is close to Christmas; therefore, I love Thanksgiving food.  Who am I kidding…I love food…and dessert-365 days of the year.

The  morning came and off I went to check in for labs and such before I headed up to the procedure floor.  Blood draws…such a mundane task, but so thankful for such an easy way for information to be gathered.  (Hint…always ask for a butterfly…trust me…ask!!!) Then it was time to go up a few floors and check in for procedure.  I kept asking folks to volunteer as tribute…no one did.  Note to those reading…DO NOT check in early for procedures….you will be called early…just saying…..so called back.

First was the lovely ten million questions that I have come to assume is an attempt to catch you in a huge lie about your weight or height or drinking or smoking habits…then came my conversation about my veins and what typically can go wrong…what always goes wrong and before you could blink, the nurses went and grabbed an anesthesiologist.  (Smart girls!!)  During his search and destroy mission, we chatted and his brother did his undergrad and grad at my son’s grad school for Cello performance..small world.  I didn’t get a sense of great pride from this brother about his brother…but I suppose if you can’t knock out excerpts from classical pieces from the 1800’s..well…jealously.  I mean..doctor..sure..that’s awesome and all…but classical musician…that is so much better!

A little IV help for those who are a hard stick:

  1.  Have them wrap arm in a warm blanket.
  2. Ask for anesthesiologist or oncology nurse to start your IV
  3. Know where IV’s are the easiest to thread and ask them to use that area
  4. Do arm weights to build up muscle mass in your arms.  I was told all the medical reasons as to why this works, but again…drugs.  
  5. Drink plenty of water the day before/day of an IV stick
  6. Ask them to not dig for a thread
  7. Get the local.  If they won’t give you a local, see number 2.  Those two can.  

With the IV in, I was sent back out to wait my turn to change clothes and go to holding.  Can I just say that was a really short wait….it really wasn’t, but when you are still wondering just what can you do to make it where you can leave and go have dessert..it seems like a short wait!

Holding time came and before I knew it I was being rolled off to the procedure room.  I wasn’t fearful, mostly just desiring to be fully aware of each part of the process.  Surprises are not my thing-at all.  I’m an order gal.  I prefer my days to be post-it note organized-or at least appear that way.  I can go with the flow, but that flow has to be about a 1MPH flow….anything more than that and well….you best have some cake to go with that chaos.

Dr. Welch and his team explained in great detail what was going to take place.  As I was positioned for initial scans, I was given the first dose of medication meant to keep me relaxed so that the biopsy would go more smoothly—not sure if that is for the patient or the doctor performing the biopsy.  As they then positioned me and marked the biopsy area, it was clear the meds had done much of nothing.  Another dose…..another dose….fourth dose..bingo, we have a winner!  I would be a very expensive addict given my tolerance to such medications.  Initial bee stings as site was being numbed.  Another slight pressure of a bee sting as the wall was numbed.  A few pops of the biopsy gun, and it was done.  I’ve had more breast biopsies than I can count and I truly believe this was easier-discomfort wise, risk wise lung beats breast though-lung risks will honestly freak you out a tad if you let them.  I was then wheeled back to observation on my left side…..passed that faithful man of  mine and of course, I hold up the peace sign.  (I am obviously very chilled at this moment….peace sign?  Really Kim?  Invoking your 1960’s birth decade I guess.)

Let’s just say…if you have had a lung biopsy, you are a popular patient for that first two hours-that critical window where most complications will occur.  I did have a slight hematoma come up that required some beautiful marker drawings on my back and some periods of pressure as they worked to relieve it and make sure it wasn’t developing into something more.  I tried to rest. (Insert laughing of everyone who has spent any time in a hospital setting…the word rest….) Soon it was time for the initial X-Ray to check for pneumothorax and any bleeding that might be taking place.  Check..Done…still, so very chilled.  I think you could have told me North Korea had a nuke coming this way and I would have held up the peace sign again. (Suppose I shouldn’t joke about that given the events of yesterday.)  Keep in mind, not only was I floating on the meds given in the procedure room, I was also on a narcotic to control my constant cough for 48 hours…..I was basically…zoned out sitting on Mars. Anyhow….about 45 minutes later, the team walked in and asked if I was ready to be released to the hotel.  Wait?  What?  I can go????  I was told a six hour hold, so to be leaving so early….seriously folks…that’s God.  I had zero evidence of even the tiniest of complications.  Nothing!  (2 1/2 hour hold!)

So, after being educated on some very scary things that can still happen after release, I was on my way.  Given my little drug fest, I had to do that whole wheel chair thing.  Here I am, chilled to the core, and I get chatty Fred as my escort.  If you know me well, you know how annoyed I was the entire ride down.  Things were going well…..we stopped and Lee ran in to a philly steak place to get me a sandwich….I stayed in the car…..Kim, sitting up, full of drugs…let’s just say I was going down fast…sweats, spinning world…all that joy.  Sent Lee a text…bring me an ice rag NOW.  He came out…and because he was much smarter than me…turned on the car blasting the A/C at winter levels.  Whew….can I go to bed now?  Kim was coming off the drugs. (My little episode gives me even more empathy towards those battling addiction…my four minutes compared to what has to be days…I can’t imagine the strength.)

Back at the hotel, I resume my left side resting and nibble on my sandwich that honestly was nibbled on only to prevent another full blown world spinning episode.  Finally, rest.

The next day, still on narcotic for cough. I felt drugged…still…not at the same level as the day before, but I wasn’t firing on all cylinders for sure.  We ran back to Chester’s for lunch and then it was time for the clinic appointment for results and being released to go home.

Prelim results: as we all hoped and expected, squamous cell papilloma.  No signs on conversion in the samples taken.  Due to having so many nodules, we are going on the assumption the same will apply to those nodules as well.  It could not be true, but that’s the assumption we are on right now.  So, where does this leave me in this little saga?  On the left, I have the one that was sampled and another one sitting on the pleural wall.  (There are some tiny ones in the left as well, but they seem stable.  The right has some nodules, but they are still too small to sample (7mm and less).) The area against the pleural wall has changed…a good bit.  It has a good bit of cavitation and that can be problematic.  Where we are today is deciding if I want to have the lung resection and remove the two on the left leaving me with only nodules 7mm and under and then go to trial….or skip resection and go straight to trial.  Either way…I’m going to trial-NIH/NIC Baltimore.

I go back to Mayo first week of October to visit with the thoracic surgeon that is focused on VATS procedures.  My goal, if I proceed, is to avoid a full open procedure.  To do the resections via robotic surgery.  I’ve had an open procedure before.  I know what that involves and I am going to have to work super hard over the coming days to put that experience on a shelf so that I can make the best decision on how to proceed.  Leave the two large ones on the left and hope that the one on the pleural wall calms down…and that the one we biopsied stays benign and enter trial….or, resection and then go to trial to work on the smaller ones that would be left after resection.

Pulmonary papilloma just stinks.  When the doctors at Mayo talk about how rare you are…you know you are rare.

So, that’s my medical update.

Have to say this…some folks read their Bible while in the hospital or doctors office for peace…some pray….this chick..well I have found there’s nothing better than an iPod playing Bethel Music, Hillsong, Nockels, Jobe  to put this mind and heart at ease.  Find your place and what takes you there….doctors, nurses all want you to be at ease.  It makes their job easier, procedures easier and most of all….puts a smile on your face!

Please, do not think I am strong or anything close to that.  I’m pitiful.  I whine on a lot of days about this path…I really had rather not be on it…but I am. I don’t understand why, and I very likely won’t in my time here on Earth. All I can do is focus on one step at a time…one pebble at a time…and try not to view the mountain.

Peace out folks….time for more coffee.   (Enjoy this coffee wisdom.)napkin-mayo

 

 

ASCO, Patient Advocacy and Hope-Entry One

This will be a multi-piece blog.  One blog simply isn’t enough.  I recently had the honor of attending ASCO on behalf of the Recurrent Respiratory Papilloma Foundation (RRPF).  ASCO stands for American Society of Clinical Oncology.  It is the world’s largest gathering of specialists, advocates, researchers, etc…for the field of Oncology-which represents more than just cancer care.  For todays blog, I am going to focus on a piece in the Global HPV session….why that, in what can only be described as  “sea of information” to send out?  HPV and RRP are siamese twins, so to speak.  The future of HPV will and does impact the future of RRP.

So, here we go.  Let’s go ahead and disclose this blog is about the HPV Vaccine.  Stay with me…it’s good stuff.

Let’s get a little HPV background:

  • Most humans that are infected clear the virus within 180 days.
  • Eighty percent, yes 80%, of the population has been infected by the age of 50.
  • HPV causes 600,000 world-wide deaths per year.
  • Currently, the HPV vaccine is available in 34% of countries world-wide.
  • Brazil has the highest death-rate due to cervical cancer, a HPV positive cancer.
  • Science has proven that HPV is found in cervical cancers, many head and neck cancers (especially non-smokers), anal cancers, penis cancers, and most recently the connection to some NSCLC (non-small cell lung cancer).
  • There is a social stigma attached to the HPV virus, especially in the U.S.
  • Recurrent Respiratory Papilloma is NOT a sexually transmitted disease. 
  • Transient HPV infection can be invisible
  • 70-80% of all cervical infection is HPV 16/18
  • WHO guidelines call for HPV DNA testing along with pap smear cytology to show with a 90% sensitivity no HPV infection.  (A negative pap smear does not mean you are not a HPV carrier-hence the need for HPV DNA testing.)
  • Oropharynx cancer shows 80% are HPV positive
  • There are over 200 types of HPV
  • HPV 6, 11, 16, 18 are the most common strains found in cervical, H/N, lung and RRP as well as anal/penis.
  • Various medical organizations recommend HPV vaccination for all boys and girls aged 11 to 13, adult males through age 21, adult females through age 26, gay and bisexual men, and men and women with compromised immune systems through age 26 if they did not get fully vaccinated at a younger age.

There’s just a tidbit of the far reaching impact of the HPV virus.

We have something readily available to us that can and does create a dramatic reduction in infection rates of genital HPV.  We have something readily available to us that has shown scientific promise in future tumor prevention in those already infected.  (RRP studies are still in infancy and while there is some evidence it can help a patient already infected with RRP, the information is too new and data pool too small to truly include in this blog entry.)

I hope at this time, as a reader, you are going what??  What do we have that can prevent me from getting nine strains of HPV and drastically lower the chances of me developing certain cancers?  What can even show some promise in a person already infected with HPV to help lower their viral load?

Gardasil 9 by Merck.  A three dose series vaccination that has proven to be safe and effective.  (Protects against nine HPV strains, 6, 11, 16, 18, 31, 33, 45, 52, 58)  Vaccination can begin as young as 9 years of age in both girls and boys.  Nine?  But doesn’t this vaccination give my child permission to be sexually active?  No.  This vaccination will help protect your child from infection of HPV….oh, but my child is going to wait until marriage….great.  Wonderful.  What if they marry someone that is infected?  What if, God forbid, they are in college one day and raped behind a dumpster?  What if someone puts a drug in their soda at a random place one day?  Wouldn’t you like to know that you did everything you could to insure their safety from infection and future cancers?  And then there is the population that isn’t talked about…..RRP….how does that relate to this vaccine if it’s  (RRP) not a sexually transmitted disease?

RRP-typically HPV 6, 11.  Juvenille onset usually presents by the age of five.  Wait?  A five year old with HPV?  Yes…..a five year old.  A three year old.  A one year old.  How? The truthful answer is the answer isn’t finite.  It’s a muddy answer…but what we do know is that the child, whether during birth or in-utero is infected by the HPV virus.  Most children are able to clear this virus with their immune system…but those few that cannot….develop RRP.  (See http://www.rrpf.org) “Ok, but I still don’t get how the Gardasil 9 HPV vaccine relates.”  If the parents of that child were not infected (did the Dad infect the Mom, was the Mom already infected…and on and on), that child, based upon how HPV 6/11 works should not be infected with the virus to begin with…no development of RRP.  Now, with all that said, the infection route for the child is still muddy.  The only certainty is that the child became infected.  The how, when, why and where are still full of uncertainties.  If for no other reason than to potentially create a “herd” immunity to certain strains of HPV….to, in theory, maybe one day prevent another child from developing RRP…vaccinate.

While at ASCO, we were presented some very compelling data to the vaccine and its success rate in dramatically decreasing infection of genital HPV.

IMG_2957_2

Yes, you are seeing correctly.  This is dramatic.

600,000 deaths world-wide each year.  That’s enough to justify vaccination of our children.  Upon speaking with a researcher at St. Jude, he gave a compelling argument as to why vaccination is not an open door to sexual activity.  In their experience, they actually believe it brings a reduction to sexual activity…the conversation regarding the reality of sexual activity creates knowledge in the child about dangers related to unprotected sexual activity as well as the desire to protect themselves from infection.

What if you have already started the vaccination process and didn’t choose Gardasil 9? You can switch to the Gardasil 9 series.  What if I took the prior vaccination?  You are good.  While the new vaccine does protect against more strains, you are protected from 6, 11, 16 and 18.

It’s safe (http://jama.jamanetwork.com/article.aspx?articleid=2088853), it’s effective and it could change the future in regards to several cancers.  It gives me great hope that due to its safety and effectiveness that a cure for RRP is truly around the corner…which is my advocacy focus.

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

Lindsay’s Story

This story is about Lindsay Stern.  Her parents have been instrumental in being a voice of RRP, research, support system and lead the RRP Foundation.  Long before Facebook or Twitter or really the internet as we know it today, they were leading the way….fighting not just for their own daughter but for each one of us that fights RRP daily.  They are truly RRP Heroes.  

Lindsay Stern’s RRP Story

[The following is reprinted from an article that appeared in the Spring 1996 issue of the RRP Newsletter plus updates to the present.]

We adopted Lindsay from Korea when she was 13 months old.  From the first day that she was with us we noticed that she had a low cry and a faint deep voice.  We often mentioned this to our pediatrician, who said that we were “lucky” that we didn’t have a baby with an ear piercing scream.  She seemed generally happy and healthy, except for an occasional cough, croup, and constant ear infections.   Shortly before her second birthday she seemed to be breathing loudly and then began snoring loudly when sleeping.  After more than a month involving many visits to the pediatrician, diagnoses ranging from post-nasal-drip to asthma to croup and 3 weeks of prescribed ventolin and prednisone treatment, we were referred to a local otolaryngologist, Dr. Stephen Farmer, in Princeton.  After looking into Lindsay’s larynx with a scope, he sat us down and told us what he knew about this disease that we (and our pediatrician) had never heard of.  He referred us to Mount Sinai Medical Center for emergency admission that evening, November 14, 1991.  Lindsay was scoped again and the resident otolaryngologist suggested the possibility of a tracheotomy (at this point we barely knew what a trach was, let alone the implications when it is used in conjunction with RRP).  The next day Dr. Peter Catalano performed a laser surgery, thankfully, he was able to avoid a tracheotomy, despite the fact that she was nearly 99% obstructed ( We remembered the embattled and exhausted look on the face of the anesthesiologist after coming out of surgery.  Lindsay was the most severely obstructed two year old they had ever seen!) She spent 9 days at Mount Sinai with a second laser surgery 6 days after the first.

We had many questions and only received a few answers.  No one seemed to know much about RRP, only that it is rare.  Were we all alone with this disease?  What type of life did our little girl face and how many more surgeries will she have to endure?  Will she live to go to college, get married and raise a family?  Is there anyone doing any research to try to find a cure?  No one knew of any support group.  We scoured the Mount Sinai medical library for information.  The little bit of literature about RRP that we found, told us that it was virtually certain to reoccur for some time.  We very much needed to reach out and talk with others in similar situations.  It was this deep need for emotional support that motivated us to seek others and develop a support network of RRP families.

We began the process of reaching out to others by contacting the otolaryngology departments of  major medical centers in the Northeast U.S.  In our search we found out that Children’s Hospital of Philadelphia (CHOP) had a significant RRP patient population and the otolaryngology department clinical nurse, Linda Miller, provided a wealth of information (and if it wasn’t for Linda’s support and guidance, we might not be coping today).  Over the next 6 months Lindsay had 7 more surgeries, all at CHOP.

During this brief but aggressive period we felt our emotions wax and wane as this disease went through its unexplained ups and downs.  For example, Lindsay’s 5th surgery since diagnosis occurred on February 13, 1992, it was her best to date.  Her surgeon, Dr. William Potsic, told us that he found only a small amount of papilloma on the false and true cords (using the Kashima scoring system, my estimate was a score of 2, where 0 is none and 27 is total coverage and obstruction).  He lifted our spirits by predicting that we should be able to extend the surgical interval to at least 5 weeks.  Well, this fickle, uncaring disease gave us a significant emotional blow, when less than 3 weeks later Lindsay began snoring loudly and her nightime breathing had become distressed (i.e., early stage stridor).  Unfortunately, this was a Friday night, which meant an emergency room admission.  In anticipation of some difficulties, we video-taped Lindsay’s breathing while she slept that night.  On Saturday morning we went to the CHOP emergency room and, as we feared, were presented with difficulties.  The emergency room doctors didn’t really have a clue regarding RRP,  saying that she might have a touch of bronchitis and were going to send us home with ventolin.  We insisted on having the otolaryngology resident on call examine her.  He also was about to release her, not finding any significant respiratory problem in his exam.  But she was awake now, and as parents of an RRP patient we knew that respiratory problems from papilloma (in young children) always appear more noticeably at night while asleep.  We insisted that he look at this video of her sleeping the night before.  Reluctantly, he agreed, and 20 minutes later he came back saying that she was obstructed and would be admitted.  Our difficulties in this situation did have some positive impact on emergency admission policy for RRP patients at CHOP.  Based on our experience, Dr. Potsic, who very much believes, that parents are the best judge of when their kids with RRP are ready for surgery, instituted a policy that a child with RRP will be admitted and surgery performed on their parent’s say so.

Lindsay continued in an aggressive mode, requiring surgeries 7 and 8 over the next 5 weeks – we were starting to consider adjunct treatments, such as acyclovir or interferon.  About a week after her eigth surgery, we received a call from Linda Miller.  She had just spoken to some one from Long Island Jewish Medical Center (LIJ) and during the conversation a study involving indole-3-carbinol (I3C) and RRP was mentioned in passing.  We quickly pursued this by contacting the LIJ department of Otolaryngology and were put in touch with the researcher, Dr. Karen Auborn.  Dr. Auborn told us of encouraging results with a mouse study and suggested cruciferous vegetables as a source of I3C.  She estimated that about 8 ounces of cabbage (or about 4 ounces of cabbage juice) might provide a sufficient amount of I3C to induce a shift in estrogen metabolism so as to suppress papilloma growth (see the RRP Newsletters Fall 93 through Fall 94, http://www.rrpf.org/newsletter, as well as Newfield et al., 1993, Anticanc Res 13:337-342).  Lindsay’s 9th surgery occurred several weeks after initiation of a daily regimen of between 4 and 6 ounces of cabbage juice (The juice was made palatable by mixing approximately 2 oz. of cabbage juice with 5 oz. of apple juice.)  In contrast to the 8th surgery, which (like most of the prior operations) involved laser excision of a large amount of papillomas from multiple sites, the ninth surgery revealed a very small amount of papilloma which could easily be removed with a microlaryngeal forceps.

Lindsay continued the cabbage juice regimen and had two more visual examinations of her respiratory tract under general anesthesia at which no papilloma were found.  The first was at the end of June 1992, 6 weeks after her ninth surgery and then again at the end of September 1992, shortly before her third birthday.  At the beginning of 1994, when it was learned that we could obtain I3C in powdered form we gradually modified her sources of I3C to include approximately 190 mg of powdered I3C daily and reduced her cabbage juice intake to about 2 ounces per day.  As of the Spring of 1996, when Lindsay was 6 1/2 years of age, she continued with this therapy and remained free of symptoms since her last RRP surgery in September 1993.

We are most thankful for Lindsay’s apparent remission and wish the same for all RRP patients.  It is our firm belief that I3C played a key role and this appears to born out by the accounts of some others in the support group as well as the clinical work of Dr. Clark Rosen and Dr. Karen Auborn.

—————
A few years later a better form of I3C became available, so we switched Lindsay’s adjunctive therapy to BioResponse DIM (http://bioresponse.com/Home.asp). Now in the fall of 2014, about 18 ½ years since our original Newsletter article about Lindsay, we are happy to report that she remains in symptomatic remission.  We are extremely fortunate that Lindsay has been able to lead a very normal and active life.  She was a competitive swimmer into college.  These years have not been without episodes of hoarseness causing us concern that active RRP might be returning.  However, scopings have not revealed any recurrence of papillomas.  Lindsay does seem more sensitive to voice abuse and did have a number of tonsillar infections including one incidence of a tonsillar  abscess that led to a tonsillectomy at the age of 19.

We know that I3C / DIM does not work for everybody, but during the more than two decades that we have been involved with RRP we have seen significant progress in other treatment approaches.  In our opinion a remaining major challenge is to produce an effective treatment for pulmonary RRP, which affects a small percentage of RRP patients, but transforms an annoying disease into a life threatening one. One of the RRP Foundation’s main initiatives is to motivate the RRP research community to develop new approaches to produce effective treatments for aggressive, deeper, generally inoperative RRP.  Data suggests that lung involvement impacts about 5% – 7% of RRP patients, but it does represent at least 95% of the mortality associated with this disease. In addition, treatments that prove to be effective in these aggressive RRP cases should also be effective at other sites in the respiratory tract.

This article would not be complete without noting that without the inspiration of a number of RRP practitioners and researchers, i.e., Tom Broker, PhD, Bettie Steinberg, PhD and Haskins Kashima, MD, we would not have been motivated to actively seek information, network and organize.  In particular, we are indebted to an article in the New York Times early in 1992 which put us in contact with Dr. Tom Broker .  Tom literally spent hours on the phone with us.  His enthusiastic support for developing a close working relationship between RRP researchers and patients was critical in directing our efforts and creating the RRP Foundation (www.rrpf.org).

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.)

What In The World Have I Started!

The lightbulb moment when you realize you have so much to say, but are often limited in what you do say due to limitations both physically and well….socially.  Not to say this isn’t a bad thing, as keeping my mouth closed and ears open probably serves me far greater of a purpose than letting everything flow out of my mouth.  Yet, I do know that for some crazy reason that I do not understand, I have been led (after months of saying, no God, I don’t think so) to sit here typing my first entry.  Maybe there’s one person sitting somewhere out there that I am to reach….probably will be the only follower I have, but hey, what’s that they say about if you have just one friend you are richly blessed???  Before I go any further, let me add that if you are a member of the grammar police, please take off your badge when reading anything I may type.  I will likely type the way the words are running around in my brain, which let me tell ya, can be a very scattered place most days!  

So, just what pushed me over that edge to enter the world of blogging that I so don’t understand and honestly, avoid at all costs most days?  Was it a weekend at Women of Faith?  Was it a Facebook post on the RRP Support page by someone feeling so incredibly lost and angry at a God that would do this to her?  Was it sitting in a room full of people secretly wishing my voice could be heard?  Was it eating a tasty dish that I wanted to share with the world?  Was it my Mommy ego that wanted to post a picture of my amazing kiddos, cause well, they are…or was it the Mimi in me who had something to share about empty nest life, life with grandchildren and life with a child still in college?  I have no idea!!!  

My story is winding and ever changing……but it’s my story and my journey and if you find it to be something worthwhile in your crazy schedule, welcome!  I’m not going to sell you anything.  I may brag about a book or event or something that I find to be to good not to share, but this will not be a self-promotion site where you have to scroll through three paragraphs of sales to get to what’s happening on a given day.  That’s great for some folks, but just not my cup of tea.  

So, grab a cup of coffee, pull up a chair and let’s see where this thing goes.  For today, this is it.  Just creating this is such a leap of faith for me……………and I’m not that tall, so any leap is huge. 

I’ll try to do this a couple times a week, but it may be more..it may be less….whatever I feel led to do.  It’s not about me…it’s about Him and what He wants me to use this for.  So, that’s all for today.  I think we may go to my RRP story first, but I need much more coffee to start that one….and well, it’s only been a one cup morning!  

K

“Don’t get stuck in a moment.”