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.

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-A Mid-Cycle Update

“One of the ways that our faith expresses itself is by our ability to be still, to be present, and not to panic or lose perspective. God still does his best work in the most difficult of circumstances.”
— Tim Hansel

That seems easy enough-right?  If you said yes, I know you are not being truthful.  It’s HARD!  Those words above are like telling me to not eat that last bite of chocolate cake….I can talk a good game, but at the end of the day-that cake is gone.

We are at an update part in this Kill the Paps journey.

I had my end of cycle scan this past Wednesday.  (I also had the arrival of what could only be called an alien abduction of my throat-seriously…when I am in tears over throat pain-call the CDC-it can only be the plague.)  I digress.  Scan.  I’ve lost count on how many CT scans I have had over the past four years, but I still have to close my eyes as they move the table under the scanner.  There’s just something surreal in those moments as the scanner does it’s thing, the contrast makes its way into every crevice of your body-you have zero control over anything that occurs during the scan or after the scan. (See above quote.)  Something with such enormous implications, ends with a quick removal of an IV, and you then leave as if it was something as mundane as a routine lab draw.  The hands of the clock the next twenty-four hours move like molasses on a cold, winter day.  This was a big scan….it would determine whether we placed a port on Friday, whether I would move to cycle two….determine if I went to the OR for a debulking.

Thursday afternoon came, and I saw it pending in my portal, so I knew it was time to call for the answers to the above steps.  I’ll just park the results of the trachea portion of the scan right here.

Yes-you are seeing that correctly.  In three doses, almost half of what the lesions were upon intake scan!  Pulmonary all stable-nothing new.  Larynx-nothing new (it was clear at intake).  A good report (minus learning there’s a dental issue to deal with that has given me zero indication it existed).  This meant-Friday was on.  Kim was getting a port.

(I have to say, that on Thursday, texting my Arkansas and Chicago friends with the update was probably just as awesome as the results….this is my tribe who has prayed over me for this entire journey…..invested in this walk. Shared my sorrow when the clinical trial failed, when the disease was just unrelenting. Offered words of experience/wisdom/support with each decision that I have made along the way-including the port.)

So, now to the port.  I wasn’t nervous-I was more than ready………until…..wait…this seems to be a tad bigger deal than I had it in my head.  I almost put the shoes back on during education training.  Let’s say that seeing it up close and personal….it was the size of a python…ok, maybe not, but it was deeper than I anticipated it being.  PS-I did not need to have training on the catheter/needle used to access port….I could have remained blissfully unaware and been totally ok with that…there’s a reason I don’t look at IV upon entry.  Some things are better left unseen.

Can I just tell you that every nurse I have interacted within the Emory system has been excellent!  Seriously, I told my spouse that I honestly felt they were as good if not better than my Mayo care.

Once all the boxes were checked, I was wheeled back into the frigid procedure room.  I had been told that I would be given conscious sedation and would not be aware of what was taking place, and would likely not remember any of the procedure.  I was ready for my drug induced nap.  Drugs given.  I’m looking around, unable to see much of anything due to being tented (PS-tent someone with a trach and our natural reflex thinks you are going to block our airway-hand goes up-I’m scolded…) Back to the drugs….nothing, nada, zilch…I get a booster….nothing, nada, zilch.  Insert mild panic on my part, realizing what was fixing to take place-I was going to be a major participant in todays procedure.  Neck is numbed.  Can I go now?  I think I’ll pass on the rest.  Then chest was numbed.  Seriously, I’m good..let’s call it a day.  I’ll spare you the detailed details, but let’s just say that I am certain Thor walked in with his hammer and snapped things into place.  The cardiologist was wiping my tears. Why didn’t they give me more meds?  Avastin has this little side effect where it can raise your blood pressure-and mine was running 152/90 on this day and at this point it was just best to keep going.  Soon, it was done and with no drowsiness, no complications, I was free to go in about thirty minutes.

The past forty-eight hours have been uncomfortable, but I still know this was a good decision-even if I wanted to jog my way out of Emory on Friday after education and during the procedure.

I was able to enjoy church this morning and was able to get out for a bit yesterday to enjoy the beautiful weekend here in the peach state.

This week, I begin cycle two.  My goal this cycle is to see a trachea with zero growths after the next three infusions, no new growths and the beginning of shrinkage of my pulmonary nodules.

Today, I celebrate a wonderful scan report, a complication free port insertion (minus my full participation) and I celebrate those who have held my hand this entire journey.  Someone was talking about my being brave…and I’m really not…not by myself anyways.  I’m brave because of those who walk alongside me. I’m brave because I refuse to accept any outcome that doesn’t end with a clear scan down the road.  Is it this drug?  I don’t know.  I just know it’s coming.  I hope it’s here on this earth, but it could be when I have my wings…either way….I know it’s coming.  I do wish my Mom was here for this.  I wish I could have told her that the papilloma are on the losing side of this battle.

So, peace out, drink some coffee….stay out of the kiddos Easter baskets.

Kill the Paps-Episode One, Update Three

“Isn’t it a bit unnerving that doctors call what they do practice?” —George Carlin

We are almost two weeks post infusion #3. We are almost one week from the first scan since beginning Avastin. In other words, this cycle is a big deal.

My J was in town for his break for #3, and I sure did love his face sitting beside me during the infusion.  He is the perfect infusion partner-quiet, mindful, and unshakable.  My favorite introverted extrovert.

The day began with labs, and given the drama of the last infusion, we decided to wait on IV and break out the butterfly.  Seems I am now tagged to lay back for labs….this is what a drama ridden blood pressure will do to you-tagged, noted, flagged.  All went well and off to clinic.

Clinic.  “Wait, that’s high for me.  Can you recheck that?”  Near mirror readings.  It seems I may have developed one of the most common side effects of Avastin, high or elevated blood pressure.  Was told to monitor it over the next few days and report back via email on Monday.  (Further down is an update.)  Released for infusion.

After some celebration by infusion nurses that came to my chair over my scheduled port (Yes, I’ve decided to get a port.), a tag team effort begin to get an IV in that would hold and flush.  Two attempts.  The second landed in the top of my right hand, and it did flush, it did have blood return….but man….was that little baby sore!  After playing with tubing, taping, anchoring and getting my hand and arm positioned on a pillow to relieve some of the discomfort, drugs were up and the “IV hold” dance commenced.  I had the same nurse as infusion #2, so it was nice to see her being so helpful as we worked to complete the infusion and baby the IV.  She told Josh how sweet I was, and I made sure he heard that!  Due to the IV being in the top of a very tender hand, we did have to slow the rate down just a tad more due to burning.  We chatted about the process once a port is in, and let me just shout this-I CAN’T WAIT! My veins are all doing a happy dance, and I know not only will the process be easier on me, but less stressful on the entire infusion day team. Years of anesthesia running through my veins, veins that are just tired….mixed with running a drug that prevents the formation of new capillaries, and I think we are all in agreement….praise hands to the port!  I’ve received so much support on this decision from those in my RRP community who have already walked this road, the spouse, the parent, the son, the daughter, the nurses, the oncology team, friends who have walked the road of regular infusions….I know it’s the right decision!

Infusion ran.  Done.  IV out…time for lunch.  We went back to Ponce City Market and had the wonderful shrimp po-boys again!  Yummy, sweet gulf shrimp!

The rest of the day I spent just being lazy.  We had been so busy while Josh was in for break, we all were happy to just “be” and take in Stranger Things.

Infusion #3 notes:

• Nausea night of and some the next day.
• Back pain-this one was new.  It lasted two days, and was more evident at night when in bed.  It was not fun.
• Elevated blood pressure has not left, but it is staying somewhat consistent.
• Cough seemed increased first three days and has grown less to be back where it was prior to infusion #3.

So, all in all, I cannot complain about this process.  IV access has been the drama for me, and I haven’t really worried about the blood pressure as that’s an easy fix and will be temporary.

Now, to set the anxiety on the table and walk away from it as I head towards the scan next week.  The scan determines if we proceed to the next cycle of three.  No progress, we cancel port procedure and any further infusions.  We are all so certain we have seen changes, that I know it will be a huge crushing blow if there has been no regression of disease.  I’ve read all the “read this verse”….I’ve listened to all the “listen to this song”….and I have readily admitted how mad I get at God sometimes over this disease and all it has brought.  I’ve also tried to focus on what this disease has brought to me that I cherish-and that’s my RRP community and some of the medical staff along the way.  I really do have this extended family, most of whom I have never met, that gets me…gets all of it.  I wish I could undo the stress this disease has brought to Lee, Josh and Meg….and to my parents.  I guess that’s what I hate the most-what it has done to those around me.  As we sat in church this past weekend, and Passion band was blowing the roof off the building…I kept this thought in my head-oh, how I wish I could sing…a voice that would be used in a mighty way.  That’s my bucket list #1 item.  My heart sings so loudly….and I dream of my voice matching my heart.

So, we march towards next Wednesday…..with fingers, toes, ears crossed.

Kill The Paps-Episode One-Update Two

Well, we are almost two weeks post infusion #2.  Here’s the update on things…Avastin style.

Infusion #2 had drama….pure “look at me” drama.  Things started well….IV slipped in on top of the hand on the first try…praise hands.  Looking back, the next part should have been my “sign” of how things would go, but I was still focused on the one stick. Nurse had to really massage the blood out of the IV for my labs.  She had just finished up, and that familiar “hmm…I’m nauseated, I’m having cold sweats, is the room spinning” came over me-I looked at her and quietly mumbled, “you need to check my blood pressure.”  I believe it was something like 61/34.  Nurse, “I have an emergency in here.”  Legs go up, chair laid down, fluids hung….yep…I remember this….but the last time, it was after seven large trial tubes of blood…this time, it was after three very small routine lab vials.  Several minutes later, we start to see progress and nurses seem less frantic.  I, on the other-hand, have that post BP drop hangover.  Can I just nap now?  Hilarious, but old school nurse was in charge of me this AM and at some point, I still had to get to clinic.  After my vitals assured them I was not headed to the ICU for monitoring, in comes a wheel chair to take me to clinic….yes….I was that patient.

Clinic went well…labs all good….nothing that would prevent me from having next infusion, so back to infusion center.

Well, maybe the drama just prefers the infusion center, but drama showed back up.  After a rather long wait for drug to come up, it was time to hang that little bag and get the day finished.  My veins…well…they had another plan.  IV failed.  Pain when trying to flush, tender to the touch…..I was defeated. Then began the drama to find another vein that met Emory protocol.  Seems that sweet vein right in the crease of your arm is a no go for these drugs.  Thankfully, the nurse thought ahead (because that sweet spot in the crease is where the vein was going to cooperate) and inserted IV just above that crease….this allowed us to appease the protocol eyes for that day.  An hour later, and the show was done.

What did I notice this infusion?  No headache this time, but I was fatigued for two days.  It’s not a sleepy sensation, just your body is tired.  I’ve still not had any mucous plugs for about three weeks now.  Coughing is down….whether it’s related or not…unsure…but it’s down.  Cleaning my inner cannula is down as well….maybe two or three times a day.  I noticed some very slight air sneaking out around stoma site, and that was new….and I know there were some papilloma in that area…could shrinkage be allowing occasional air leak? Little things, big questions.

I head back in next week for #3, followed by first treatment scan two weeks later.  If not for the IV issues and BP drama, it’s really been a fairly easy process.  Infusion staff and my oncology team are wanting me to consider a PORT.  The order is in, and it is up to me now.  Seems like a big step given the frequency intervals of my infusions, but one I know I should at least consider.  I worry about the PORT infection risk, but I also know if I’m on this drug longterm, plus lab draws, scan contrast IV’s, and IV’s needed for an occasional procedure to keep airway open….maybe I get/will get stuck more than I realize.

That’s where we are today.

Today’s Kimism:  None of this is a choice.  No one with born with a chronic condition has made a choice to be sick, to seek healthcare (death or healthcare isn’t a choice)…..in this era of healthcare being this huge partisan political issue….be kind, have empathy, understand for those in the fight-it’s not a choice.

Kill the Paps-Episode One, Update

We are exactly two weeks post-first infusion.  Second is scheduled for February 21st.  As I have said, I hope to use this little blog as a “look back” as I wind around this road, and I also hope to use it as a reference point for those who may be considering this journey for themselves.  With that said, this may be a little “matter of the fact” type entry, but I do hope to find some humor along the way.

First infusion began with labs.  They are looking at platelet count, WBC count, protein in urine, and the overall picture that the labs present of my current health.  High protein levels in the urine seems to be a fairly common issue while on Avastin, and it’s an issue I hope drinking the same volume of water as Lake Erie, daily, will prevent.  Growing gills as I type.  Once labs are drawn, it’s a waiting game for those results to come back.  Everything stops until then.  No meds are ordered, IV not started….zilch.  Lee and I used this downtime to trek over for a very early lunch outside the walls of the clinic-and clinic food.

Labs back, and due to it being my first infusion, no issues were expected, but nice to still know everything is in range.  Now, to the fun part.  (Fun being used very sarcastically, in my best “Sheldon” voice.)

FOUR sticks to get an IV. FOUR.  Did I mention FOUR?  24 gauge….so we are talking very small in the IV world.  Four different infusion nurses attempted to do the impossible…thread an IV into scarred veins.  Finally-it was in and flushing…and the angels sang.  (Get a port, everyone said….well..about that.  Avastin comes with a bleeding risk, and I would have had to choose to postpone the first infusion for 28 days post port…and at the time, that seemed like a silly idea…..I was questioning that decision with great thought as each attempt failed.)

Now, meds could be ordered.  Waiting…so much of the infusion day is spent waiting.  The guardrails in place to help prevent a medical mistake are unwavering.  A constant double-check of steps, a second set of eyes along the way…

Meds up…it’s go time.  At first, (10mg Avastin) we had a runtime of 30 minutes….almost instantly, the burning sensation from my hand to my shoulder become unbearable.  Once we slowed it to the rate of one hour, there was relief and the infusion continued.  Unlike my experience with Avelumab, there were no pre-meds.  No Benadryl!!  Seriously-Benadryl and I do not get along.  I become this agitated monster, so to hear no pre-med was music to my ears.  The next hour was spent watching nurses come and go, hearing various conversations around me….sipping my water..because Lake Erie and all….and then it was done.  Maybe a fifteen minute hold time afterwards, then IV was removed and I was free to go.  Compared to the Avelumab, so far, this was a walk in the park.  As I walked out, I realized so many were still there tied to infusion pump.  Hours of infusion time for so many of those undergoing treatment for various cancers.  I had a tinge of guilt as I walked out…that I somehow had cheapened the process by being done so quickly.  From lab to walkout-five hours.  (That includes the 45 minute IV drama.)

Back to the house…almost as soon as I was leaving, I began to experience the sore throat.  Not painful, but just a sensation that wasn’t there prior to the infusion.  I was prepared for the ocean of nausea that I had experienced on Avelumab, but for the first few hours….it didn’t come.  Later that night, some mild waves came to shore, but a single dose of Zofran took it back out to sea…or should I reference Lake Erie here too?  The next AM, that’s when Avastin showed me the love…the Avastin headache.  The Avastin headache was pretty much a forty-eight hour event.  Tylenol knocked it back down, but as someone who isn’t a fan of headaches….I was uncomfortable…but compared to the NIH experience…still… much easier. An afternoon of fatigue did come in the day after the infusion, but not debilitating. Twinges of nausea came in and out over the next three days, and then everything seemed back to normal.  Week two had a few moments, but again, a single Zofran and I was back on track.  I wasn’t looking around for the nearest trash can as I was while on the Avelumab.

Now, onward to the notes that I have kept during this.

1.  Reduction in mucous plugs.
2. Reduction in blood in sputum.
3. Seeing some reduction in coughing.
4. Occasional twinge in stomach.

Infusion two is just days away….what will this next post-infusion cycle bring?

To clarify/a disclaimer-this is a road using Avastin systemically.  This is not the same as injecting papilloma sites during the OR.  Side effects and outcomes/method are not the same.

Stay tuned!!!!

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.

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.

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

 

 

 

 

 

A Church Update in the “Peachy” state

Ok…..I’ve been fairly open over the past 24 months or so on my whole church journey, Jesus journey….so thought I would update via a blog post, rather than a mini-series of Facebook status updates…

I won’t rehash all of the ramblings that I have already posted…you can just scroll the blog to find that.  I’ll just start with right now, today.

Upon our move, we began visiting churches.  Andy Stanley’s Woodstock City is literally just down the road, so it made sense to visit there first……it’s a massive church and is well attended and has programs for programs for kiddos/youth.  It just wasn’t for us.  Coming from SBC life to Willow Creek life to now…it just wasn’t a fit.  We knew instantly.  We also made the trek into Passion City in Atlanta.  Gosh, it’s an incredible church.  Lou Giglio is an incredible teacher, and who wouldn’t jump up and down to the music of Passion Music.  Issue-about an hour drive and no community groups up this way.  I knew that being in a true local community was one of the things clearly shouted to me as we left Willow and made the move to Georgia.  We left incredible friends in a small group and I came to love the entire concept.  Did some online visiting of FBC Woodstock and I just can’t.  I can’t go back…for a litany of reasons.  So…insert some fairly deep research into various denominations.  Mission statements, doctrine, social statements….all of it.  This led us to visit a very small UMC church.  Super sweet church, but we both knew a good women’s ministry and a good men’s group were two things we didn’t feel led to cross off our “wish list.”  So, research some more…and we visited Hillside UMC.  We opted for the Contemporary service…well…love. The teaching, the music, the people…the size…love.  We have visited more since the first visit and this past week actually filled out the card to let the masses know we have been there.  Even visited a Sunday School.

Now….here’s some honest words for you.  I’m not sure where I got this in my head…but somewhere along the path of life, I began to believe only SBC folks were really saved-if you didn’t say “the” prayer and get dunked-one way ticket to hell for you.  Willow undid that for me….and again I say, I don’t know where that thought came from -if it was from teachings or just my messed up interpretation of all of it. I get it that Heaven will be a community of folks who chose to Follow Him…period.

If you followed me on this blog, you have followed me as I just tossed “Evangelical” into the fire pit….and you have followed my rambling, but deliberate process in all of that.  That hasn’t changed….that word has taken on meaning I just can’t process.  It’s become a political word, a weapon used against others….and I believe Jesus would flip tables all over….and I believe He is rising up leaders in the Christian faith to do just that for Him.

So, Kimmie is falling in love with a UMC.  I loved sitting and being part of “All Saints” Sunday.  I loved hearing the bell toll for each loved member who passed this year.  I loved hearing what “All Saints” Sunday meant…and I instantly had several faces come to mind who had been “Saints” in my life-pouring into me.  I’ve quickly come to appreciate the reverence of people doing the “sign of the Cross.”  I’ve come to appreciate a congregation that doesn’t expect that of every person there.  It’s not just a ritual.  I experienced my first UMC version of Communion this past weekend….I am falling quickly in love with the attitude of “for us, in us, through us.”

I’m excited to get to participate in an “Advent” series.  My Mother’s family has deep UMC roots, so it almost feels as if I am home with each of them in this journey.  So, that’s where my journey is right now.  Wanting so much more of “For us, In us, Through Us.”

 

Let’s Catch Up

Let’s catch up.  A lot has taken place since I last sat down to type out my little ramblings…..in case you didn’t know…..we moved.  Yep, we left Chicagoland and are now residents of Hotlanta metro area.  Why?  I’m so glad you asked…

Chicago.  I loved the city of Chicago.  I loved her diversity, her determination, her architecture, her food, her people…..just loved it.  I loved our church….Willow Creek is just awesome.  We loved our friends.  We had met some of the most incredible people that I certainly hope to stay in contact with over the years to come.  I was shown how to do Jesus in a way that just healed my soul.

“Sounds awesome, so why move?”  Glad you asked.

1.  Winters, for me, were brutal.  To walk outside in January and my lungs just cry in pain…I just couldn’t do it.
2. Lee had an awesome opportunity come up that allowed him to narrow his career focus into more of the things he just loves to do.  Also allowed him to lose the tether to the work phone on the weekends.  LOVE!!!
3. No more travel for my medical care…Emory has a top notch team for my disease.
4. Family….we are now just over three hours to his parents and my Dad and sister.
5. Cost of living.  I think that one needs no further explanation.
6. BEACH BEACH BEACH….four hours from Atlantic, five hours to Gulf Coast…..

Those are some of the reasons….but mostly because it was time to  move on.  This already feels like home…like the home you want to be at when that sun sets on a life well lived.

What am I loving so far about Hotlanta?  Gosh, southern food.  Southern weather.  Folks dressing up for dinner out on the weekend….I may have to dust off my heels again….and the ability to make a quick trip to see family and not need to mark off three or four days for that trip.  Hills and mountains….won’t lie…flat land and I just don’t get along.  I need to see those hills and mountains.  Oh, and Zombies….seriously…..I’m in Zombieland!

Now, to find a church…..funny….three years ago I would have just sat down in the closest FBC church and called it a day…but Chicago, Willow Creek changed me….God forced that change…and now I want that church that is diverse, refugee focused, non-political, socially aware, where every person is valued for where they are right now-not where folks want them to be.  If you can’t value a person for where they are today, why would they ever want to improve/polish who they are for the future?  A church where people are truly seen….that the outreach of the church is so intentional, you see the hands and feet of Jesus daily in the church…not just on event days.  So, all that to say….we haven’t found a church yet.  We LOVE Passion City, but it’s honestly too far to get involved with during the week.  Atlanta traffic is legit.  So, we keep searching….trusting we will know when we visit “Our Church.”

So, that’s life right now…..we moved.  🙂