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

Not Twenty Anymore…..

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

A Heart

A Heart

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

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

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

Finally!

Finally!

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

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

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

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

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

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

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

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