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.

 

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.)

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