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.)