Advocacy, When It’s You

“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.”- Maya Angelou

We, as humans, are an odd lot.  We do an excellent job of preaching to the masses about what they should do, but fail miserably at following that own advice for ourselves.  I have found that human trait to be a glaring obstacle in my own life as I travel the roads with RRP and pulmonary RRP.  Advocacy for you, well, it’s a thousand times easier than advocacy for myself.  For myself, it can be exhausting.  That leads us to todays post, “Advocacy, When It’s You.”

It’s been just over five years since I learned I had pulmonary metastasis of Recurrent Respiratory Papilloma. (RRP since 1972) If you believe some of the older literature on this rare complication of RRP, that would mean that I am on the flip side of the ten year stopwatch.  Thankfully, because of advocacy, I know that is a misinformed expectancy based on a few cases.  I know just as many far past that mark as I do that didn’t cross that ten year line.  Within the past five years, I have been to the OR several times (what’s a few more on top of 250+?), had my first non-general bronchoscopy, seen the in-office snake more times that I care to recall, participated in a NIH trial using Avelumab, agreed to a power-port (my veins hate me), sat in the oncology infusion chair every three weeks for the past year (until now-update coming), inquired on a new NIH trial with the plan to go to intake in April, become a bold advocate for RRP and pulmonary RRP, and realized that as much as I wanted, and still want, to ignore this “lot in life”, I can’t.  If I’m not advocating for me, then who is?  If I am truly invested in the chase for the cure, I have to have the same intensity for my own disease path as I do for those I call my Warrior Family.  What no one tells you is this-advocating for yourself can often feel selfish, greedy, unwarranted.  We are bombarded with ads in every area of our life-ads for various diseases, cancers.  Is it selfish of me to hyper focus on my disease, when there are so many diseases that need attention?  It’s on those days where I ask that question that something always happens….I always get reminded that my advocacy is bigger than myself, bigger than RRP….whether it’s a new Mom of a RRP Warrior reaching out to the community for any nugget of hope that can be found, or an adult who didn’t know the disease could come back after a remission, or a person who stumbles onto a blog and learns about a disease they didn’t know existed, or a conference invitation-another opportunity to share awareness, a day where I have to tell my community of a warrior passing from conversion of the disease, the opening of a message to learn of another warrior with pulmonary disease, a day where I connect with stakeholders who could lead us to a cure, or simply share the life stories of my Warrior Family…that reminder that for my community, this disease is as big as the most heavily funded pharmaceutical on the market, it’s our world, it’s the life we live.  It’s personal.  It’s not just me, it’s an entire community.

So, once again, I ask you to follow my journey, in the hopes that my story helps someone, somewhere.  In the hopes that my story is seen by a researcher who is focused on HPV+ solid tumors, in the hopes that a pharmaceutical sees my story and understands it’s the story of an entire Warrior Family across the world pleading for a cure.  In the hopes that my story gets one family to head to their primary care and ask for the Gardasil vaccination series.  In the hopes that on the days I am simply exhausted from my own disease journey, that you will use my story, our stories to help us chase the cure.

The past few months have been a roller-coaster.  At some point over the summer, I developed a pain in the center of my chest.  It kept increasing in intensity and frequency, and was enough to prompt cardiac exams. Nothing was found that would point to the pain, so oncology’s answer was pain meds.  “It must just be a side effect.”  Due to the bleeding risk of Avastin, I was put on Tramadol.  From a couple times a day, to every four hours with breakthrough pain, this went on for months.  Worsening cough, things coming up that resembled small aliens, countless clinic visits, and this very knowledgable advocate was in the very tailspin she works so hard to keep others out of.  Thankfully, I have an advocate to lean on in these times (who I also call my friend), and she would remind me of things on the days my head simply wasn’t in the game. I never really understood how exhausting pain could be, until this issue.  How powerful the pain is on your brain and your entire being. A ten week break from Avastin was requested, and  I was finally able to get a bronchoscopy to view the area I knew pain was radiating from. I wish I could tell you that it was because of my care team pushing for answers, but it was because of me not giving up and trusting that I knew my body better than experts in their field.  This is 2019.  The pain first began summer 2018.  The bronchoscopy revealed a very angry airway, with some very angry plaque at the bronchus/carina area that led up into my trachea. (Exactly where I was feeling the pain radiate from.) That was suctioned away.  There was some instant pain relief, not all gone, but relief.  An infection came to visit (Or was it already there and we just angered it), so it was Levaquin time.  There was still pain, and still some aliens coming from my airway, so I then reached out to request an in office scope.  Apx. two weeks from bronchoscopy, seven months from initial pain, we saw a tracheal ulceration.  I am now on week two of another round of Levaquin, with about two more weeks of medicine left.  The pain is only there when I cough, and from what was a 8 on the pain scale, it’s now a 3.  Is this my new normal?  Or will this resolve once ulceration is healed?  Is the ulceration due to the Avastin?  Did we wait too long to begin to space out infusions?  If I had not kept pushing my care team, would I have developed an Avastin induced fistula? My head swirls these days thinking of the various outcomes, and the danger I could have been in.  My head gets angry when I think back on all of the times I messaged, mentioned, etc.. what was happening.  Angry at myself for even letting the tailspin happen.  I know better, yet when it’s your care, it’s harder to follow your own advice…because that’s your apple cart you are about to flip over.

Where am I today?  Today, I’m on Levaquin and the side effects can be horrible some days.  I head back next week to be scoped in office to see where the ulceration is, as well as meet with a cardio-thoracic surgeon, and I will be having an endoscopy to view esophagus soon to verify no damage made its way there.  We may or may not try another Avastin infusion in March, all depends on the ulceration.  April should be a visit to the NIH to screen for M7824 trial. I am tired, and I wish I could wave a white flag and make it all go away, but this is my reality and I’m working to find the blessing in it so that the bad days aren’t bad weeks.

Now, how about some good news!  Ya know, those blessings in the midst.  I am so excited to let ya’ll know that the RRPF will be going to the World Orphan Congress in DC in April!  I can hardly wait to make our presence known, and I am so thankful to Terrapin for the VIP pass.  I just know we are close to finding the cure, better treatment options.  How can we not be?  Science is moving at warp speed these days in learning how to harness the immune system….each day we get more proof that HPV is found in far more cancers than we knew just a few years ago.  Each day we get closer to global herd immunity to the HPV strains that cause cancer and RRP.  We may be a community of disabled voices, but we are also a community of able voices and in our croaks and creeks, we are one voice.  I know for a fact that anytime anyone with the RRPF attends a conference, we are there as an entire community-and we get stronger each day.  The pulmonary arm of the RRPF is at work to find a team to help get to screening for pulmonary RRP and create a database of where patients are and who is treating them and positive outcomes-laser focused on a curative treatment.  The RRPF is in the process of launching an IRB reviewed patient registry.  Each day brings a little bit larger footprint.

Personal good news-I’ve been reminded how difficult being a patient is, and that will make me fight even harder for my community. So, advocacy when it’s you-yes, it hard.  Yes, it will cause tears.  It will mean far too many bite sized Milky-Ways go in your mouth. So, my fellow warriors, let us keep going, one foot in front of the other.  A determined march to not lose another one of our community, chasing the cure with focus and determination.

 

Kill The Paps-End of Summer Update…and Fuzzy Faces

Sorry for the MIA status.  I have no excuse, other than summer is the “Peer Pressure” King of all seasons.  Am I the only one who feels guilt if not sitting by the pool on a warm, sunny day?  Anyways.

Tomorrow, I head in for infusion #10.  Monday, I have the CT scan to measure where we are with pulmonary and tracheal disease.  On October 3rd, I will visit the oncologist to learn what our next step is based upon those CT results.  The hope is that things have continued to resolve and that would allow us to try infusions at six week intervals, instead of three week intervals.  I spoke to a fellow warrior a few weeks back, at another clinic, and she was at twelve week intervals.  How awesome would that be?  No visits to the OR, and besides flushing the port every four weeks, infusion visits spacing out to twelve weeks….awesomesauce.  While the days of post-infusion nausea appear to be over, the Avastin headache is real and I’m hopeful that if we can space things out more, I can stop that nightly dose of Tramadol.  (Although, that dose of Tramadol at night does have the pleasant “unexpected” plus of reducing my night-time coughing.)

My last OR trip was December 2017.  I’ve been scoped in office twice since then, with no disease present above or on “my larynx.”  (I use air quotes as a reminder that my larynx looks more like an alien from a far away planet than an actual larynx.)

I get asked frequently how I am feeling.  Most days, good.  Some days, incredibly tired.  I’ve always said that if I take a nap during the day, it must be the return of the plague.  So many causes of fatigue, especially if a female in her early 50’s…..so it could just be the Armageddon raging between hormones a and b and c and d and e and f and so on….younger gals…get ready….it knocks you on your backside.  That’s all the encouragement I have to offer.

Something I’ve noticed since I began going to the infusion clinic (head/neck oncology cases are infused on Wednesday and Friday), is that I’ve seen many come and go.  I find myself desperately wanting to ask where they are now….did they complete their treatment cycle, did they end treatment, did they die?  I especially want to ask about the grumpy former Marine guy.  Some days, I cringed at some of the things he would say, but I find myself looking for him at each check-in.  I see the same nurses each visit, the same front desk workers…..we’ve reached the point where we don’t even talk about medical things…it’s about summer trips, favorite foods, etc.  I’m normally on campus about five hours total.  A good bit of that is sit and wait.  Some are there twice that amount of time.  Some even go home on treatment.

I’ve tried to learn things while on this journey.  Or at the very least, see things from a new perspective.  I keep coming back to the fact disease, illness doesn’t care about your socio-economic status, what title you hold at work, your good deeds, your mistakes….every single person that I have met in the journey could be anyone of us.  Just as I cannot make sense as to why I have this disease, I cannot make sense as to why those I have met have their disease.  I hear the phrase, “I have been blessed with good health,” a lot.  I’m not sure we can really say that.  That implies that God favors one of us over the other, and that’s not His character.  That phrase implies that I, at the age of five, did something that had God remove a blessing of good health from my life.  It reminds me of the prosperity gospel, but used in health conversations.  I digress.

So, back to infusions and paps.  I haven’t had a papilloma dislodge in months now. I can still smell more than I have been able to smell in years.  (This is a mixed praise….the mixed smells of a food court make me want to turn green and run to the nearest trash can.)  I have never regained that amazing voice that I had for that period during the NIH trial.  Just as we have no idea what brought it back, we have no answer as to why it hasn’t returned.  Side effects, gosh I can sometimes be so tired.  The Zofran and I have cooled our relationship, and that’s a good thing.  The blood pressure settled into its new norm.  Still high, but not let’s get this girl on medication serious.  We all know the cause of the rise, and that allows some “leeway” in whether to treat it or not.  As I said above, the Avastin headache is for real.  It’s always in one spot.  Thankfully, the nightly dose of Tramadol has brought the headache count way down.  The port is still the best decision I have made this entire journey.  The placement was awful, and I’m not sure I could do that again without being under general anesthesia.  For any of you that receive regular infusions, I strongly encourage a port.  For now, the insurance approvals for the drug are rolling in without an hiccups. I know how fortunate I am to have insurance that approves an off-label treatment.  I do not take that lightly.

Now, I assume you are still wondering why I typed “Fuzzy Faces” in the title?  Well, here’s the little “oops” we have been dealing with the past few weeks.  Seems highly likely that I experienced TIA’s.  One in Austin, one upon return from Austin.  We are still in the “testing” phase, and I have two more weeks of the thirty day heart monitor, but so far nothing is jumping out.  Neuro is leaning heart, so we shall see soon.  You want to see an ER move…walk in and say your face feels numb on one side and that earlier in the week you lost your words and couldn’t recall words…and that your right hand went numb.  Seriously, if you ever experience anything that could be a stroke, run to your closest “Stroke Certified” center.  I was impressed and I don’t impress easily when it comes to medical anything.  PS-Also, don’t be me and ignore the Austin symptoms.  So, I’m a semi-robot walking around with this patch and hi-tech bluetooth talking thingy.  I have trouble keeping up with my actual phone, so adding another “phone” into my daily life has been fun.  Yes, it does give you little annoying messages if you go out of range from it.  It also beeps very loudly at 1AM when the patch monitor dies and needs recharged.

Well, there ya go.  The update.  Exciting things in October though…some of us RRP folks are gathering in Atlanta, then there’s the AAO conference, then Kimmie will be traveling to DC to rep the RRP warriors at the 2018 NORD summit, followed by a trek west to celebrate the best Birdie in the entire universe.  So, here’s to better treatments, a cure, discoveries to restore voices, and dismissal of resentment of being sick.  (Yes, I’m human…some days I resent this disease like I resent frogs.)

 

#raredisease #NORD #NORDSUMMIT2018 #recurrentrespiratorypapilloma #avastin #health #laryngealpapilloma #HPV #gardasil #merck #genentech

Kill The Paps-Episode One

This will be the first entry in the series that will follow my journey in the use of systemic Bevacizumab (Avastin).  I hope to mix the science with some humor and maybe even a dash or two of joy/hope.

RRP

While I breathe, I hope.

Episode One.

One of the first pharmaceutical treatment ideas that was discussed after my lack of response in the NIH trial was pursuing systemic use of Bevacizumab What is Avastin?  Now, you are likely aware of the hurdles and obstacles that walked out in front of my bus..primarily that of insurance approval, followed by the amount of work that I, as a patient, was having to invest into the idea.  Off-label, especially with no clinical trial data, is a hurdle most insurance carriers simply don’t want to be part of-evidence based medicine is the name of the insurance game.  With a few papers on limited use as the only “pay for this” ammunition, it’s been an uphill battle while also wearing a fifty pound backpack.  (Which basically is the same as a “sloth.”

Fast forward to this past week.  Background on most recent surgery-my tracheal disease is in high gear.

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December 2017 Tracheal Disease

I’ve wanted to go down this therapy road for months now, so to see the disease in such an aggressive phase, as well as the pulmonary involvement, I became even more determined to make this happen.  Emory has an outstanding RRP practice.  What I learned this week is that they also have an outstanding Head/Neck Oncologist.  Dr. Saba believes in this idea.  He agrees with this option for my case. I’ll be his second RRP patient on this protocol.  The ball started rolling and in warp speed….a schedule is set, pending a stable CT scan.  I’m more important than the insurance hoop….they will get me over that hoop-not my burden.  We have a plan.  The plan is in place and I have one job-show up.  No hours spent working for approval, no hours spent digging for every shred of evidence I can find in how this treatment has worked in several RRP patients….my only concern is making sure I am ready for infusion day and following my “to do” list.  (Well, and staying away from Dr. Google on side-effects, possible complications-little information is available on side-effects, complications in the use of Avastin as a stand alone treatment.)

There’s anxiety over what to expect, as we all react in such an individualized way to any medication, but especially those used in the oncology field.  Will I be as sensitive to this drug as I was to Avelumab?  Avastin is a VEGF VEGF How It Works, while Avelumab was an immunotherapy (PDL-1 inhibitor How Do PDL-1 Inhibitors Work).  There’s anxiety over my pitiful veins holding up, but a port is something we want to avoid due to increased infection risk.  (Ha, well, maybe the anxiety is over the IV in general….I loathe those little creatures.)  A prayer for urine proteins to stay normal, blood pressure to not spike, and for no bleeding issues to arise!  (We do know that my Benadryl push needs to be diluted and slow, so that’s one less issue to worry about on infusion days! Also, am I the only person on the planet that drug doesn’t render comatose?)

So, there you have it…..scan, three infusions, scan, if regression-repeat and then work into a maintenance routine.

While on Avastin, there will not be any OR procedures. Hopefully, this will allow a long period of maintenance, a much needed break from the OR, a break from this chronic cough, and will work to prevent anything from converting.  Will it kill the virus? No.  Will it hopefully give me some relief until science catches up to the mechanism of the virus-hopefully.

I’ve included links to the few papers we have available on systemic use of Bevacizumab (Avastin) for those with aggressive tracheal/pulmonary RRP that may be interested.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5551929/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4186578/

https://www.ncbi.nlm.nih.gov/m/pubmed/28657692/

https://www.ncbi.nlm.nih.gov/pubmed/27996119

 

 

 

 

 

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.