The Avelumab Journey…Week One

I’m going to blog/journal this season….mostly for my memory bank…so I can look back and remember…and celebrate the successes as they come..and mourn the failures as they occur.

Monday:

It was a very eventful flight from ORD to DCA.  With travel advisories along the northeast coast due to strong winds, the DC area was not included….and if you look at a map, the proximity to “travel advisory” area was….well….let’s just say the last forty minutes was a roller coaster and grown men were clutching their arm rest.  I do not have a fear of flying, but I will be perfectly fine if I never have another flight such as that one.

After a shuttle from DCA to the NIH/NCI….it was time to get started on what has been a two year journey.  (see prior blogs for more on the journey)

Let me begin by saying that the NIH is remarkable.  Walking in and knowing every single patient there is in a clinical trial…and if you know the vastness of the campus, you know how inspiring it is to see an atrium full of people…all there to either be a patient, support a patient, act as a researcher, a care giver, a member of our military in medical service…to see the goodness of our tax dollars at work.  To look at the mission statement of the facility and be in awe….to know everyone there has one purpose…medical science.  Tomorrow’s cures, todays novel treatments, and eradication of diseases of the past.  Doctors, nurses, fellows, patients, caregivers, shuttle drivers, administration, hospitality…from diverse backgrounds…from around the world…with one goal:

img_4947It’s still inspiring each time I read this statement.   To know so many across this world do not have access to such care and research and feeling so unworthy that I do.  Realizing for all the issues our  healthcare system may have, people travel from around the globe because of the  level of healthcare in this country.  Let us never forget the scientific research and the resources required to have that standing in the world in regards to healthcare.

After visiting admissions, I was taken to the unit that would be my home for the next six days.  As I exited the elevator with my admissions counselor, and we turned to the right…there it was.  Oncology.  One word…on the plaque indicating our location…the moment things began to feel real….I was really doing this.  I was here.  Soon, I was greeted by those who would be caring for me during my stay-in my private room (insert happy dance).  Nurses, research teams, doctors, fellows, social workers….just when I was certain I had met everyone, another group would come in.  This is where the NIH/NCI gets way cool.  Yes, I was there for a specific trial…but…there were other trials ongoing that my blood/tissue would be of help to.  Trials regarding the history of viral infections, trials working to map the genome of the disease, trials involving manipulation of T-Cells to create a desired response…some crazy cool research….of course I wanted to be part of that.  To know that my participation could possibly lead to answers for so many….(this decision would also cause me some unpleasant issues, but nothing worth having comes without hardship-right?) A whirlwind of activity and then it was time to use the glorious “pass” to get off campus and enjoy dinner…

I’ve been part of the RRPF for years…people have become like family…people I have never actually met in person.  One of the greatest gifts in my travel lately, is that I have had the opportunity to meet people I have spoken with for years.  This trip, was no exception.  The Woo’s have been an integral part of the RRPF since its inception.  Their daughter, Jennifer, was honestly a rock star to our community.  A Georgetown Medical graduate, she was also a RRP patient…and also had pulmonary involvement that had converted.  She exuded joy and passion and she is greatly missed by so many across this planet we call home.  Being able to sit down with her sister and her parents…and to be able to talk about RRP and finding out things about a family that has worked so tirelessly not only for their own child, but for people across the globe…it was an honor to sit with them…a debt I can never repay for the hours those original members have put in…for the goal of a cure.  Monday…my cup runneth over.

Tuesday:

Tuesday began at 5:30 AM.  My door slowly opened to my room, revealing a glimmer of light from the hallway…”Blood, I’m here for blood.”  I hear the cart rolling over to my bed and there he was…seriously, the kindest appearing man. He would be “the vampire” for my entire stay.  That’s my phrase, as there was seriously a lot of blood taken during my stay.  The wake-up call of blood draws signaled the “green light” for everyone else to begin their day with me.  There was the EKG, the CT scan, the vein assessment for aphresis (which I did not pass), clinic visit where I was able to spend time with my best friend, “The Scope”(Although, I do believe Dr. Allen may in fact be the “scope whisperer”)..and then the formality of signing final consent forms.  Everyone, from point A to point B was so kind and qualified in their role.  I do not give out medical compliments lightly, as I have a large memory bank to pull from when the words “exceptional care” are used…and Tuesday was “exceptional care.” I was given a pass to leave campus for dinner if I so desired, but the time change and my day just said, “let’s keep this party on campus tonight.”  So, I took out my dining menu (yes, an actual menu) and ordered dinner and spent some time working on “Armor of God” and of course, social media.  Soon it was time for 10PM vitals and meds, and my first full day was done.

 

Wednesday:

Wednesday began just as Tuesday did….the sound of a rolling cart approaching my bed.  He gathered the tubes…readied my arm, prepared the butterfly catheter….wait..what….my barely awake eyes noticed there were eight empty vials on my bed…inches long.  Ok..no problem….then…about tube four…a cold sweat, dizziness, tingling in my face…”I am super woozy”…..those words….and suddenly a nurse appeared, ice bag was placed behind my neck…and I felt miserable. BP was taken….64/31.  Oops.  Bed manipulated to bring my head lower than my legs.  After about an hour, it had risen enough to allow the nurse to leave the room.  I was exhausted.  And my day had not even started.  Soon, against my body saying “rest, Kim, I want rest,” it was time to head over to Anesthesia Assessment.  Again, I cannot explain the quality of care with every department that I received.  Since my aphresis was canceled due to my veins not being able to support the pressure that would be required, after my anesthesia consult, I was able to return to my room and rest.  Teams came in and out, but I took advantage of an unexpected free morning to just “sit.”  Soon, it was time for Lee to arrive and the two of us enjoy my final pass for the week.

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My, I’m pushing fluids face…while waiting on Lee to arrive.  

Lee came in and after he got settled, we left for the Bethesda Row area.  (Ok…if you know me at all, you know why I picked that area….cupcakes…) We had the kindest NIH shuttle driver.  He was this man who had a presence that would fill a room, but such a heart for what he was doing for others.  We learned he was Mormon and that he loved getting to know the patients as they returned back to the NIH.  Such a servants heart.  Soon, it was time to head back to campus to beat the clock on meds…..normally, the night before an OR visit, I am filled with enormous anxiety.  I wasn’t looking forward to the OR on Thursday, but I wasn’t anxious about it either.  I had that level of confidence in my team and in the fact God had opened this door and had it all covered.  My job was to just “show up.”  With an Ativan for good measure, it was time for sleep.

Thursday:

I was the second case of the morning.  Lee came in around 7AM, well after the “vampire” visit and a couple of nursing visits…..soon it was my time to go back to pre-op holding.  Lee was able to come with me.  He was able to stand by my side until the moment I was taken back to the OR.  IV was started by my anesthesiologist, everything verified for the millionth time, my cocktail that prevents me from getting sick verified as well….and then…right in front of me…a huddle.  Every one on my team….doctors and my OR nurses and my anesthesiologist, came together to go over the plan one  more time as a group.  That’s the last thing I remember…and even it’s somewhat vague.  Soon, I was back in the room, with no pain, no complications, no sickness…just the strong desire to sleep.  I vaguely recall Dr. Allen coming and telling me he got 12 samples…or maybe it was 14….the math is a tad fuzzy there.  The good news is that so much testing can take place due to sample count….which not only could benefit me, but countless others down the road.

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My vocal chords post-op.  The little bumps you see at the top are papilloma.  

Here’s a funny on Thursday….I barely recall having Lee order me noodles for dinner.  It seems, based upon the note I wrote listing my food options, I also asked for toast and jello….literally, zero recollection of this….the note was his proof. I don’t recall getting on social media Thursday evening….thinking maybe I should double check and make sure I haven’t caused some type of International crisis….or said something to place me on a watch list somewhere….hey…stranger things have happened.

Thursday came to a close.  Friday was coming….Friday.  And just like that, the enormity of my decision poured over me.

Friday:

I want to say that I opened my eyes on Friday morning free of anxiety.  From the blood draw, to the time I was sent down to have my IV placed via ultrasound (yes…my veins are that high maintenance)….the entire morning was just surreal.  I could see the seriousness of the decision on Lee’s face…and I felt it so heavily on my heart.  There wasn’t a moment of second guessing….just that moment of gut check… I have signed consent for a drug to be introduced into my body that will alter my immune response.  A drug created for Stage 3 and 4 cancers….but becoming more and more accepted as a possible first line defense, especially in those immunotherapy drugs already on market.  A potential game change in cancer…and if this trial is successful, a game changer in the treatment of RRP and pulmonary RRP.

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The Infusion IV is ready.

After IV placement, I went back to my room.  It was merely a waiting game now.  Waiting for pre-infusion drugs to come up and the Avelumab to be delivered.  They said when I had the Tylenol and Benadryl administered…it was almost time.  It was almost time.  50 mg of Benadryl does not play nice…let’s just put that out there.  The process was started.  The bag was hung, the tubing fed through infusion pump….and attached to my IV port.  Two nurses double checking every single step.

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I watched every drop….every move of the nurses.  

I’m not a snuggler…I honestly can’t tolerate the sensation of someone breathing close to me….it freaks me out.  In this moment, I asked Lee to get beside me in the bed.  Not out of fear. but out of that strong desire to feel safe in what was entirely unknown-Lee has been a steady safety net during countless trips to the OR…today would not be an exception.  Would I have instant reactions….and I watched…every single drop…each increase in timing of dosage….sleep from the Benadryl escaped me….she did not arrive.  Two years….two years of doctors appointments, scans, differing opinions on what course to take….and here I was….at the destination of this journey.  I don’t think I will ever forget that moment the nurse looked at me and said, “we’ve started.”

And then….a little over 90 minutes later…it was completed.  My BP doesn’t care for the drug, but not in a way that would disqualify me from the trial. I slept.  Tears were shed by Lee and I both..but sleep did come….finally.  The exhaustion of the moment overcame any desire to try to stay awake the next couple of hours.  Dr. Hindrichs, the head oncologist on my team, as well as the PA and research nurse and social worker all stopped by…I can’t recall a single word that they said to me or I said to them.  Friday evening came…..and no concerning side effects had occurred so far…

Then…night came…and I met Princess.  Princess was my nurse for Friday might.  Princess was a bucket of bubbles bottled up in a person.  She came here from Africa, completed her education and obtained her MSN.  She had been on the oncology floor for over 12 years.  Tonight. God gave her to me.  I was her only patient…We laughed about things I can’t even recall.  She shared her concerns over events of the days last week…and then…still said she would always choose hope and joy.  That’s what she wanted her children to remember.  Hope and joy.  She let me sleep Friday night.  After my 10PM vitals, she agreed to let me sleep, only checking on me by slightly opening my door during the night.  At 6:30 AM on Saturday, she came in just as bubbly and hopeful as the night before.

Saturday:

My BP was still acting up…nothing like on Wednesday AM, but enough of an issue it required doctors clearance to release me, even though my orders were already in the day before.  I promised to push fluids….it remained steady….I was free to leave.  The taxi was waiting for us downstairs at 10AM.  DCA here we come.  The driver…hilarious.  He was telling us the most bizarre stories of fellow drivers during trips to the CIA and other “top clearance” areas around DC.  He pointed out several landmark areas for us….often with the eyes off the road far longer than my heart desires….but we arrived safely.  Soon, we landed at ORD and to our little cocoon of rest.

Saturday was hard.  The fatigue from the drug slammed against me like a freight train.  I was spent.

Sunday:

I woke up after twelve hours of rest feeling refreshed.  So much better than the day before.  There would be an occasional wave of nausea, but nothing worth even making a fuss over…a few sips of ginger ale did the trick.  The fatigue was better…and seemed to come in the late afternoon after Lee and I had escaped for some Mexican food.  I’m eating…because I know it’s important…but my appetite is a tad down.  My hips are likely doing the Cha-Cha over this….oh..those cupcakes from earlier in the week…I had four out of six….in Bethesda.  Still haven’t had a commercial red velvet cupcake that I say, “this is good.”  I’m a master of red velvet…one day I hope to try one that I find worthy of four dollars.  Until then…I’ll just say…mine are better.

I’m cleared to return February 6th for another week at the NIH.  Then two weeks after that, I will come in just for the infusion….before returning two weeks after that for another full week and first evaluation of whether I stay in or I’m removed.

Today:

It’s time to head to my primary for the labs required on the weeks I am not at the NIH.  I honesty don’t know if my veins will show up.  Praying they do…because I have zero tolerance for anyone that can’t get in on the first stick….I’ll confess…I can even be rude about it.  45 years of needles will do that to you.  Needles do not bring out my most Christ-like characteristics.  I’m honest about it….that counts doesn’t it?

So far, I’m not glowing in the dark and haven’t exhibited any Hulk behaviors….the day is still young though….

To be continued….

 

 

The Arts and Why You Should Care

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It’s so easy to live inside our personal bubble and view things through a lens that is skewed…without realizing how things impact us that we are certain do not.  To not see our place in something bigger than who we are.  To be so inward focused, we don’t blink when we see information that should alarm us, simply because we are convinced that impacts someone else…not ourself.  Today, I want to help you see a glimpse into how organizations such as, The National Endowment for the Arts is a big part of your life….even if you never considered that they were.

In your community, have you attended a school musical or play, seen an orchestra play, attended your local community theater, had a child in an art class in school, a music class, been able to take in a local museum on the weekend, seen a Van Gogh up close and personal, watched a child who could not respond verbally respond to music, had an experience with a child who found a way out of the worst of neighborhoods because of exposure to art programs for high risk youth….any of those?  You have benefited from the National Endowment for the Arts.  Have you maybe watched an episode of “Great Performances” on PBS?  Thank the NEA.  NEA isn’t just about classical arts…it’s about community based programs that benefit those in your community-your friends and neighbors.  NEA provides grants to community programs, that allow them to stay afloat…to bring you the things that help to make your community who she is.  It’s about your child’s art teacher, music teacher who has applied for NEA based grants…grants that benefited your child and their education.  It’s about that family you know who has a child pursuing higher education in the arts.  Music, dance, theater, painting, sculpture…those things that bring joy to the hearts of those participating and their audience.  It’s the passion you saw on the face of a student as they performed their Senior Recital/Performance in college-the arts….it’s that incredible program you went to where an orchestra played the musical score to your favorite movie.  The time you maybe helped a child earn funds for a trip to perform at the legendary Carnegie Hall, Lincoln Center, or dance across the stage as a Joffrey Ballet student during a summer workshop.  It’s that movie you watched and left changed….a movie that used grant funding from the NEA to help with its budget.

It may seem that your arts locally, are funded with all local dollars and donations from patrons-but there is a partnership as well with the NEA.  Grants from the NEA create opportunities for communities and teachers that aren’t available anywhere else.  Without the arts, we become robots…full of information, but no passion for things outside of who we are….we lose the very things we love.

Here are some NEA facts:

  • In 2016, the NEA awarded $5.8 million through 194 grants to support lifelong learning, including support to pre-K through 12th grade arts education projects.
  • In the NEA’s The Arts and Achievment in At-Risk Youth: Findings from Four Longitudinal Studies, young adults who had intensive arts experiences demonstrated higher levels of volunteering and civic engagement than young adults who did not.
  • Arts education develops creativity, an important attribute and one of the top five skills employers prize in the 21st century.
  • Between 2006 and 2016, the NEA awarded more than $4.9 million in professional development grants, including the National Dance Education Organization to support workshops and online training to implement National Core Arts Standards in dance for teachers around the United States, and a grant to Virginia Commonwealth University to support Currentlab Game Design Institute for art teachers.
  • The NEA supports the State Agency Directors of Arts Education that works to develop a nationwide infrastructure of arts education peers in state departments of education.
  • NEA funding through arts education programs 1966-2016: $238.6 million
  • In 2013, 130 of 171 arts education grantees or 76 percent reported that their project benefitted an underserved population.

(Above from http://www.art.gov Fact Sheet)

I’ve pulled some grant recipients in communities that I know I have some followers from, so that you can see that, yes, this agency impacts you in a substantial and real way.  (This is just the grants for this semester.) Click the link and then scroll to your state to see the grants for the 2017 Spring semester.  Every single one of us has been to, been part of, or knows someone that the NEA has touched….we just may not have realized it, until today.

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Do you read?  Then you could have read works of literature by someone who used NEA grants, workshops to get their craft to the public…to allow them to take a semester off to write, research…publish.

Do you know a person majoring in music therapy?  NEA funds countless grants and research for music therapy and its impact to the health community, patients, and even those with autism that have shown incredible response to music being added to their therapy.  Researchers are even seeing a connection between music and the success of cancer patients in their healing/treatment process.  https://www.arts.gov/video/task-force-arts-and-human-development-music-therapy-music-listening-and-cancer-experience

  • The American public, by an overwhelming margin, believes the arts are vital to a well-rounded education.(nasaa-arts.org)
  • NCLB act ensures “arts” as a core subject (That’s music, art, band, ceramics, orchestra, theater, drama….things you are part of in your community)
  • Students who participate in arts learning experiences often improve their achievement in other realms of learning and life. In a well-documented national study using a federal database of over 25,000 middle and high school students, researchers from the University of California at Los Angeles found students with high arts involvement performed better on standardized achievement tests than students with low arts involvement. Moreover, the high arts-involved students also watched fewer hours of TV, participated in more community service and reported less boredom in school. Catterall, James S. (2002), “Involvement in the Arts and Success in Secondary School.” In R. Deasy (Ed.), Critical Links: Learning in the Arts and Student Achievement and Social Development, Washington, DC: AEP

     

    We know the arts work.  We know that the arts impact our society in a positive way.  Below is how the budget of the arts and humanities fit into the overall budget.

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I don’t see waste in the arts.  I see an investment into who we are as a society.  Who are children are.  I see an investment into entertainment, museums, theater, halls across America playing the greats from Bach, Beethoven, Gershwin, Copeland…it’s an investment into those children who find their heart on that first note, first dance step, first finished canvas…those children who choose a life of frugality as adults to bring you, the audience, an arts experience.  Those children, who science has proven, perform higher on math and reading comprehension exams.  Areas of the brain engaged most of us never use.

Enjoy movies?  Enjoy certain favorite actors/actresses?  Many of those are classical trained or have worked where NEA played a vital part to funding.  Some names that might be some that you enjoy:  John Lithgow, Katharine Hepburn, Lynn Redgrave, Angela Bassett, Richard Harris, Bette Davis, Viola Davis, Mandy Patinkin, Robin Williams…and on and on.

So many of our great film scores contain parts from famous classical works…and can you imagine seeing Star Wars or Harry Potter without the music?

Love music on your favorite stations?  Here are some classical trained musicians that you may enjoy: Andrew Bird, Zedd, Tupac, Jason Grant, Barry Manilow, Josh Groban..and on and on..

The Arts are the voice of so many….to say the NEA is a waste of dollars, is the same as saying the children and adults we know in these fields….are a waste as well.

Let’s not make the Arts and Humanities another political weapon.  Every party has always agreed on the Arts and Humanities and its place in our society.  Let’s not forget its part of who we are.  It’s part of who your community is.

Someone said to me today that cutting this would not change if your child could take music lessons….yes…oh yes it could…and will.  Those seeking higher education in the arts depend on grants to help fund their studies, their training…especially at the professional level.  A semester abroad to study the music/dance/art of different cultures, or work with some of the worlds greats….not having access to that will indeed impact access to quality arts training.

For my family, this is personal.  This is my sons chosen path in life….the arts.  Cutting funding for the arts is someone saying that his career path isn’t vital in our America.  That it doesn’t have a place in who we are as a nation.  Oh the sorrow our hearts will feel as we learn what it is like to live in a nation where the arts aren’t valued.

Today, I ask you to visit your local museum, a play, a performance of your local orchestra, your local school band…..to sit and watch those students who lose themselves in the creation of art..in all of its forms…..and then tell me it isn’t vital to America to support the arts.  Turn on your radio, listen to music…some of which has been created by citizens who studied for years to create a craft you would want to hear.  College professors in the arts typically have their PhD.  That’s the amount of training it takes to be at a level where you can teach your craft.  A waste….no….an investment, yes.

 

 

 

Out of the Echo Chamber

Ok.  So I laid out my heart, mind, soul the other day regarding ACA and treatment of others.

Today, I want to see if the conversation can be flipped.  I don’t know who will respond to this and I hope it doesn’t turn into a huge argument, but maybe if we all had this conversation…maybe we could find the middle ground we all hope for when it comes to universal healthcare in America.  Maybe someone in DC will read this little blog and work to create or repair something that works for all of us in a way that it is beneficial…and puts America on equal footing with other developed nations, even the nation of Israel that our nation holds in such high regards.

So, here is the question.  If I see something that I have information to show is false, I will comment with that information.  Not an opinion…factual commentary.

If you 100% want to see ACA repealed.  Why?  And if it’s honestly because it’s called Obamacare or created during the Obama Presidency, own it.  Admit it.

If you answer as to “it’s not affordable,” then tell the world what affordable is for you.  What would you consider to be a fair price and deductible and copay for coverage (not just a catastrophic plan) for your family?

If you answer “it contains death panels,” you need to put it in the actual statute/rule from the plan indicating as such….please note…I’m have a very factual rebuttal to that statement…it will be used.

If you have a pre-existing condition and are against ACA, why?  

And, if you thought Obamacare was not the same thing as ACA/Marketplace….own that too.  We need to stop politicizing the health of our nation with partisanship.

Lastly, if you hate ACA because of the fines….what’s your two cents on being required to carry car insurance, by law, where part of your rate is based upon the accident/claim rates of your geographical area?   If you were to get sick, or develop a condition…how would you have covered the possible six figure bill?

So….this is your time to explain to me why you want it repealed…and what a fair replacement or repair looks like to you.

We are at historic levels for the number of uninsured Americans….and the ACA does save lives.  Let’s all agree on the good that it does….because it does.

 

 

 

A Life Lived Differently

“May I take your order?”  “Hello?”  The car proceeds to the window, not having yet placed an order.  “Two number fours?”  “No, you couldn’t hear me.”  “I’m sorry, you will have to come in to place your order.”  “Actually, no, I don’t have to.  See, my right to use the drive through is protected under the ADA.”  Manager comes over.  “I’m sorry, how can I help you?”

“What’s wrong with you?”  “Wow, you really have a funny sounding voice.”  “You should not be out in public since you are likely contagious.”  “Have you tried hot tea?”  “Do you have TB?”  “Great, thanks for coming and getting everyone else sick with your cough.”

“Wow, so you are the reason healthcare is so costly?”  (This is a real remark.)

Insert imitation/mocking of what I just said by someone making fun of my voice, or lack thereof.

The stares.  The stares as I cough, sneeze or work to dislodge a mucous plug…all from a hole in my neck made over 22 years ago to keep me breathing…alive.

The avoidance of social gatherings…not because I want to be a huge introvert, but because it’s physically and mentally exhausting.  Talking is like working out…talk too much and a large oxygen-deprivation headache comes to visit.  Talk too little and people comment behind your back that you are rude.  Dinner out…conversation with those I am with is often impossible.

Welcome to my reality.  My every single day of life.  Above is just the tiniest of glimpse into what could be a fairly lengthy book of remarks, comments, experiences.  I work so incredibly hard to disguise it all as much as I can….to try to not be different in a country that seems to have to work so hard to accept anyone that is different.

I write this, not for your pity, it’s neither wanted or warranted.  I write this today as almost a real, honest, truthful glance into my life and my brain and where I am.

I recently posted on FB my two cents, worth less than that, opinion on Meryl Streep, DT, and mocking those that are disabled and the bullying of those who are different…and those who maybe don’t agree with our next PEOTUS.  I try, for the most part, to keep my very opinionated views off FB and put them on other social media sources.  I’ll like an article, share an article, etc…but if I put up a status on FB…you have to know it’s because it means that much to me.  It’s that important.  I was caught off guard by how quickly it went partisan.  How can standing up against bullying and mocking the disabled/sick be anything but supported by all of us?  How can someone being bold and taking a stance in a very public forum be anything but applauded for the community being spoke of.  My head and my  heart have just ached.  So, today, I felt led to share my side…my take….maybe if those that know me know what life is like….know why I have chosen the stances on issues that I have…maybe it will bring a different conversation to the table.  One not tied to being right, or politics or even an interpretation of the Bible.

As a child, long before insurance reforms, I rarely had insurance coverage for my RRP and the care it involved.  I was diagnosed at age five, and since that time I have had well over 250 surgeries.  All to keep me alive.  None of them “optional.”  I was always labeled as a “pre-existing” condition.  I think I was around the age of fifteen when I realized what all caregivers, my parents, family, etc… had to do in order to get me in the OR.  The charity organizations that had to be contacted on my behalf.  All because I was not able to be insured.  There were times that was because of job issues in the home, but most often it was due to that “pre-existing” clause.  I’ll never know for sure how it was done, but I had surgeries covered for years by the Shriners Hospital program…turned 18 and they still helped.  I cannot begin to imagine the financial burden my family faced because of my health. (I know over a marriage what our tally is.)  Just gas/food to and from hospitals/clinics, co-pays, deductibles.  It is a rare disease, so only certain facilities are truly able to care for it then…and even now.  I wonder now if my parents were faced with the conversation of “X dollars” upfront before we can treat your daughter.  I know so many that get that conversation now….

Then I married.  Twelve months with no prior treatment of the condition in order for it to be covered…..twelve months.  Then seeing a lifetime max benefit of 1 million dollars.  Do you happen to know what it is like to literally be forced to choose between breathing and having a surgery covered by insurance?  I do. Lee changed jobs a couple of times during pre-ACA days….the twelve month window back open….sometimes able to get COBRA to be covered for that waiting period.  I know what it is like to have to decide between surgery that I have to have to breath and the onslaught of medical bills uncovered by insurance….or to risk not having surgery to prevent financial calamity.  I didn’t ask for this disease. I didn’t do anything to get this disease.  It simply is….and I lived in a nation where healthcare wasn’t guaranteed for anyone, much less those who had conditions requiring repeated, lifetime care.  Then….we gained ACA.  Obamacare, as many like to call it.

For my community, this was a lifeline.  To know we could no longer be denied coverage or forced to choose between surgery or waiting period…to know the lifetime cap was no longer a concern. To  know children, precious children, would have access to medical coverage.  Those who made too much for Medicaid…safe from exclusion.   This has saved lives in my community.  It has saved people from losing their homes.  It has allowed a community to no longer feel punished for something they cannot control.  I know it has issues….any program this large will have issues.  Yet, when I read comments by people that know me on this program and how they can’t wait for it to be repealed….that’s me you are hurting.  That’s exactly how I read your remarks.  That the person you claim to care about is not worth the protection afforded to her in the ACA.  Then, to see the comments by folks saying they want to keep ACA but repeal Obamacare….really?  It’s the same program….I realize it’s more about who enacted it than what the program is for some folks.  So, then I read those comments as the hatred towards  a political figure matters more than that lives impacted by ACA.  How can I not take that personally?  How can I not wonder if we don’t have two versions of the Gospel floating around?  How can anyone who has maybe a family member who has lived through a cancer diagnosis….how can they speak out so forcefully against coverage for our nation?  A promise other nations guarantee their citizens.  Christ commanded us to care for the sick…..commanded.  It wasn’t an optional thing He spoke of.  I’m going to answer for how I cared for the sick…and I have to side with the protections of ACA.  It’s what we have now…and there is no plan on how to make it better.  Just complaints using political partisanship….how can I not take that personally? How can we constantly say “stand with Israel” who has Universal, legally required health care…and not demand the same for our citizens?

So, there’s my stance on ACA.

Now…back to my FB post and the start of this blog post.

I’ve been mocked.  A lot.  I’m not strong for moving past it.  I’m not this huge pillar of faith when faced with the adversity that comes my way.  I’m human.  When I see a man that will lead our nation in just a few days, openly, flagrantly mock a man with a medical condition (A Pulitzer winning journalist.)….I take that personally.  It’s as if he was mocking anyone in our nation that is less than ideal…less than perfect….that’s what the weak, the bully does.  They mock.  They belittle.  They work so hard to make sure those that are the slightest bit different know that the bully feels superior.  I saw that incident as it happened.  (Before my blackout of cable news.)  No matter the success of that journalist, I can assure you on that day…he felt demoralized…belittled….and furious that people laughed with Donald Trump…cheered him on.  That’s the hard part to understand…that those in attendance didn’t become so appalled…so shocked that they left…no…they stayed..they cheered.  They agreed with every single mocking action.  We expect better behavior from our children than we do the next President.  How can that be ok?  How can those who know me defend that?  He mocked me that day.  Every day he hasn’t apologized to that journalist is another day  in America that the disabled..the sick…are less than.  By standing with him on this…you are saying the same…that’s honestly how I take it.  You have said…my political beliefs..my party having power is of greater worth to me than someone I call my friend.  It’s of greater worth to me than standing firmly against the bully’s of the world who choose those actions against my fellow neighbor…the person created in God’s image.  That people that so ferociously defend the lives of the unborn…well…they look the other way when it comes to defending the lives of the living….all because of political power.

I went to the Holocaust Museum in DC recently.  The entire experience brought tears and heartache….but one part….shook me at my core.  As the atrocity began all those years ago, one of the first group targeted was the sick….those with conditions, whether medical or mental.  They were culled and exterminated first.  By gunshot, drownings, whatever means necessary…they were a drain on society and not part of the “Ideal Race.”  I stood there….tears coming down my cheeks…realizing not only that this took place, but that people knew and said nothing…did nothing.  Power…a drug.  A drug that Satan uses, especially against Christians, as the justification tool for a means to an end.  Hitler professed to be a Christian….a perfect race….control…power….those less than the view of ideal exterminated.  I would have been first.  The man Donald mocked would have been first…a Pulitzer winning journalist…

So, well….I suspect this was more than what you bargained for when you started reading this today….but it needed to be said…we need to all realize that our views…that they have real consequences to people we care about….that it’s not as black and white as we want things to be.

I’m not a Hollywood actress…or a prize winning journalist…I’m just me…one voice…but this one voice will stand tall against those who bully, belittle, mock…I’ll stand tall in support of healthcare for all….and I won’t apologize for it.  I take what Christ said seriously….care for the sick, the poor, the elderly, the widows….love one another…always….truth covered with so much love that when judged, I want Christ to tell me that I loved enough…that I stood in the gap for those who were invisible…with no voice…or made to feel less than adequate in a society that demands perfection.

Maybe I’ll Glow In The Dark

Two weeks from today, I will be in a full day of testing, scans, etc…..Round 1, NIH trial, day one.

It’s hard to think back to two years ago, when I first learned of the lung involvement, and see how slowly, yet quickly the wheels turned that led to this trial.  Consider this one huge update and information overload to those following my crazy lung/RRP saga.

I’m in.  Patient number nine of twelve.  (Remember that number, as one day, I shall be the famous “patient 9” in medical journals.)  I’ve done all of the background testing, medical record reviews, medical review boards…and my case is accepted.  I will be starting a trial using Avalumab (Javelin-Merck) in an effort to shrink or eradicate the pulmonary involvement, tracheal involvement and laryngeal involvement of the RRP.  Goal is cure….a lofty goal.  One no one in our community has yet seen come to fruition.  Remission, yes.  Cure, no.

It was, and still is, something I struggle with….I’m going to be taking infusions of a drug, not even yet on market, to attempt to prevent my pulmonary from killing me…and an attempt to reset my immune system to fight the virus that causes RRP…resulting in a cure.  A drug currently reserved in trials for Stage III and IV cancers.  A drug that could throw me into serious medical conditions such as diabetes one, Addison’s, liver issues, etc….a drug where the cure/treatment could end one disease and cause another.  Yet, here I am…ready to go.  Pulmonary RRP is seen as an outcome of RRP with a very poor prognosis.  I’m charting patients that we know of, and it’s about 50/50 on who survives.  I have multiple areas of concern in my lungs, as well as extensive tracheal involvement.  I am just about a worst case situation….but with no known conversion as this time, I still have options.  This is the option that I have chosen.

For those following, this is what I know of now:

I fly out in two weeks to the NIH in Bethesda, Maryland.  Day one is testing and more scans.  Day two is apherersis (something I am not looking forward to).  Day three, I go to the OR for biopsies and mapping.  (again, not looking forward to this)  Day four, infusion day.  Day five, released if no side effects greater than Grade 2.  (Automatic trial removal if above Grade 2.)

Repeat above two weeks later.  One of three outcomes at this visit.  Eradication of disease, no change or greater than 50% change.  To remain in the trial, I need at least a 50% change at the second visit.  Eradication would be a miracle, so I would certainly take that…but no change…that’s what we don’t want.  If I remain in the trial, I’ll come back two weeks later for just an infusion, then back two weeks from there to repeat week one all over again.  The longest I will remain in the trial is 18 weeks.

So, expect Zombie Kim for a while.  I’ve already made the announcement that travel for the foreseeable future isn’t happening.  I expect huge stares from folks in economy on flights as this walking test tube grabs her seat.  I may or may not shower for those flights…depends on if I decide my fellow passengers are worth the effort/energy.  If I happen to sit by you, just spray some perfume…it will all be ok.

Now, I want to share this.  We all complain about taxes…a lot.  YOU…your taxes are part of the reason this trial exists.  So, thank you.  Thank you for helping to make this trial possible.  This is a government funded trial at a government facility.  Without YOUR tax dollars, this facility would cease to exist and so many trials that lead to cures for so many diseases would cease to be in progress.  RRP gets little federal funding for research..it’s an orphan disease, so it’s not exactly a high priority.  For us to have a federally funded trial such as this is nothing short of a miracle.  Mass General has a trial now too, but it’s pharma funded and backed by Mass General.  Super, but less dependent on federal tax dollars.  So, again, thank you.  On behalf of the entire RRP community…we thank you.

I’ll post as I can regarding each day of the trial….if I begin to glow in the dark, I’ll take pictures!  If I turn into the Hulk, well….I have a few folks I need to visit, then I’ll take pictures.

So, peace out.  Support the sciences.  Support research.  One day, it could be you that needs the treatment or cure that came from scientific research in our medical community.