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, 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.