Long Overdue Update

There’s so much to update on, that I honestly don’t know how to compose everything into anything that would resemble a coherent post.  So, I sit here wondering do I just move the fingers into a session of word vomit, or do I simply type what is recent and let your imagination fill in the rest-if that imagination makes me a new Disney princess…I’m your new BFF.

Yes, I still have RRP. Yes, I still have a trach.  Yes, I still am making the short and quick Atlanta trek down to Emory for infusions. (Stop laughing, pick yourself up off of the floor…cause we all know short and quick in Atlanta is an Elf worthy “Sitting on a throne of lies.”  Yes, I still dream of that elusive loud and audible voice.  So, here I go….

Somewhere along the way recently, I lost count on my infusions. I think I’m at thirteen, but maybe it’s fourteen.  It’s one of those, and at my age, I’ll just roll with both of them.  One is right, so I’m at fifty-fifty for being correct.  Pretty good odds at pre-menopausal age.  My most recent infusion was a week ago.  Infusion clinic staff have a gift…and it is the gift of somehow remembering every name that comes into the clinic.  It makes a cruddy day much easier to deal with…you feel like you are with people who truly care about you and your outcome.  I’ve been having a fairly decent level of pain for several weeks now.  Cardiac, nope.  Viral or bacterial related, nope.  A new CT/PET did not show anything that would cause pain.  The most logical explanation at this point is that it is a rare side-effect of the Avastin.  After speaking to my oncologist and to another health provider at Hopkins, I now know two other cases who had similar pain.  My oncologist has decided to go to a six week infusion interval in an attempt to see if that helps the pain.  My pulmonary has also added in a gastro appointment just to rule out silent GERD/reflux.  She doesn’t think that it is gastro related pain, but it is a fairly inexpensive process to rule out, so add that to my holiday joy!  On a side note, I’ve learned not to fear the thin envelopes that come from BCBS to indicate my “Claim is under review.”  It’s only money, right?  An unpaid claim would just be a tiny expense of 16K…..do they take the credit card that comes with business Barbie???

All in all, things have been stable since March.  Laryngeal disease is non-existent right now.  Tracheal has had some shrinkage, but nothing new.  (My tracheal disease load was increasing rapidly pre-infusion days, so this is very good news.)  Pulmonary, we may be seeing the first signs of shrinkage…we won’t know for sure until the next scan in late winter/early spring.  We have stable lungs with no new disease, and we are celebrating that.  For pulmonary RRP, that is sometimes the best outcome.  I do spend far too much time wondering if I am converting and we are missing it….I struggle to trust the scans.  I’ve had to post far too many “Our Warrior community has lost another Warrior…” on social media.  The disease can become such a daily part of your life, it’s easy to forget that is a disease that acts as a thief…and sometimes that theft is a life.  Each death being so personal to everyone in our community-a community that is an extension of your family.

With my future unknown, I know it’s a day to day process.  Yet, I also know that as a human, I look at the mountain that seems so impossible on the bad days.  Then, something new in research will be published, and hope breathes another day.  Most recently, we are seeing simply incredible news out of Australia.  Australia Sees Dramatic Drop In New RRP Cases This brings tears, joy, hope to our community.  While the cure is still elusive, we know we have a drug in our arsenal that can help to end new cases of RRP….and we cannot preach it loud enough….Gardasil works.  Gardasil saves lives.  Gardasil can end new RRP cases.  Do not be fooled by fake science.  It’s safe and effective.  Don’t be fooled by the Christian Purity message that virginity will prevent HPV infection…it won’t.  80% of adults by the age of 50 have had HPV exposure.  8 out of 10.  (I am saying this as a Christian-get your children vaccinated with Gardasil.  Virginity is not protection.  Don’t have that guilt one day if your child is diagnosed with a HPV related cancer.  Don’t have that guilt one day if your grandchild is diagnosed with RRP.) In October 2018, in the US, the FDA approved a new age range for Gardasil vaccinations.  Now, if you are 9-45 (male or female), the vaccination is now approved for you to request. Thanks to ACA, it is a required payment vaccination. Insurance based on ACA must provide this vaccination, just as they do others such as Polio and MMR.  80% of cervical cancers are caused by HPV…..80%.  Many men/women will never know they have been infected with HPV.  No symptoms does not mean no infection.  Know the facts. Ask me.  Go to the CDC website:  CDC HPV

I’m sorry, I digressed….but we are just so eager to reach the goal-line of no new RRP cases.  No child, no adult should ever have to endure hundreds of OR interventions….ever.  Not for a virus we now know we can prevent.  If you could vaccinate your child against cancer, would you?  Of course you would, so don’t delay on Gardasil vaccinations.  It’s literally a cancer vaccine.  Do it for me….do it for my RRP community.

Back to the update.  I’m excited to say we now have TWO active pharmaceutical trials in the US.  One at Mass General the other is a new one at the NIH.  Community, these trials need you.  For us to find that elusive cure, we must be willing to be trial participants.  Contact me if would like more information on the trials or what being in a NIH trial is like.

So, yes, I am somewhat in the same holding pattern, but holding pattern with NO OR IN TWELVE MONTHS….I’ll take that deal.

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In October, I was so fortunate to be able to be part of RRP Atlanta 2018.  Being able to spend a weekend with my fellow Warrior was medicine to my soul.  Then, being able to take part in the AAO-HNSF as a RRPF representative….gosh…I love this.  I shared recently that I think my heart grows a millions times over when I’m in the trenches for RRP.  It’s such an honor to be entrusted with any part of the process towards awareness/better treatments/cure/education. One of the advocacy highlights of my year was being selected as a scholarship recipient for the NORD Summit in October.  It has already proven to be an invaluable conference for the RRPFcommunity.

For #GivingTuesday, the RRPF shared some of our Warrior stories.  If you haven’t already, travel over to Facebook to RRPF ORG and scroll down for the stories.

Merry Christmas, Happy Holidays, Happy Festivus…whatever it is that you celebrate during this season….and if you need an end of the year donation cause…find us on Facebook at @rrpforg  Help us find the cure….help us educate our community and the world around us.

More Coffee Please….(PS-Dunkin Peppermint Mocha Coffee is legit.)

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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Out of the Echo Chamber

Ok.  So I laid out my heart, mind, soul the other day regarding ACA and treatment of others.

Today, I want to see if the conversation can be flipped.  I don’t know who will respond to this and I hope it doesn’t turn into a huge argument, but maybe if we all had this conversation…maybe we could find the middle ground we all hope for when it comes to universal healthcare in America.  Maybe someone in DC will read this little blog and work to create or repair something that works for all of us in a way that it is beneficial…and puts America on equal footing with other developed nations, even the nation of Israel that our nation holds in such high regards.

So, here is the question.  If I see something that I have information to show is false, I will comment with that information.  Not an opinion…factual commentary.

If you 100% want to see ACA repealed.  Why?  And if it’s honestly because it’s called Obamacare or created during the Obama Presidency, own it.  Admit it.

If you answer as to “it’s not affordable,” then tell the world what affordable is for you.  What would you consider to be a fair price and deductible and copay for coverage (not just a catastrophic plan) for your family?

If you answer “it contains death panels,” you need to put it in the actual statute/rule from the plan indicating as such….please note…I’m have a very factual rebuttal to that statement…it will be used.

If you have a pre-existing condition and are against ACA, why?  

And, if you thought Obamacare was not the same thing as ACA/Marketplace….own that too.  We need to stop politicizing the health of our nation with partisanship.

Lastly, if you hate ACA because of the fines….what’s your two cents on being required to carry car insurance, by law, where part of your rate is based upon the accident/claim rates of your geographical area?   If you were to get sick, or develop a condition…how would you have covered the possible six figure bill?

So….this is your time to explain to me why you want it repealed…and what a fair replacement or repair looks like to you.

We are at historic levels for the number of uninsured Americans….and the ACA does save lives.  Let’s all agree on the good that it does….because it does.