Avelumab, Evaluation Week….

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This past week has been incredibly difficult.  Difficult in a way that I don’t even know how to process with authenticity.  To be honest, I am mad at God.  I still trust Him…but I’m mad.  Forty-five years of RRP…I’m tired…tired of this broken body that I neither asked for or caused.  I entered the trial with such hope.  The idea that we may have a pathway to a cure….or even just a nonsurgical option….my mind raced ahead imagining a life post-RRP.  I didn’t allow myself to really consider being a non-responder.  I did all the things I was always told to do…I prayed, I trusted…I may have even softly begged…..and at the end of the day….I was the first non-responder.  Now, I sit trying to understand the why of it all….and I realize I’m just mad.  Does that make me less of a Christian?  Does that mean I don’t really trust God….or does it simply mean that I am human living in this world that can often seem so cruel….even to those who have the strongest of faith?

I’ve learned these past few days how cruel some of the “right things” Christians say can be….I recall learning some of these after my Mom died…but they seemed easier to hear then…maybe because I knew for certain she was now without pain….she was free from the cancer that had entered into her life ten years prior to her going “home.”  She was in peace…and I could wrap my head around that and be ok with all of the grieving process….but this….now…I honestly am struggling to understand the why of it all.

So, here’s my recap of my first Avelumab evaluation..three infusions down..two OR procedures down….and it all comes down to a CT scan.

I flew into DC on Monday so that I could avoid that 5:45 AM flight on Tuesday….Tuesday began with labs and my being able to follow up on Mr. Wesley’s house story….such a kind man.  His family came here from India…and his heart is so tender, yet so funny.  Seems they put in the contract on the house of his dreams…and then his wife became upset with him and cancelled the contract…then went to India for two weeks to visit family.  Ok….you just have to imagine this story…it is and was hilarious.  He described every detail of the house to me on Tuesday morning…he was in love with this house, but he knew…it was no longer his house to own.  I’ll come back to Mr. Wesley in a bit.  Soon, it was time to head to the CT department.  When my name was called and I entered the CT room, I was caught off guard by the weight of the test and everything this scan would stand for….a machine that is incapable of empathy…untruth…what it would tell the radiologist reading my results for the trial would be 100% without human error.  The results would be whatever they were and no one could argue against the results. Thankfully, I had made dinner plans that allowed me to escape the over-thinking nature I hold….a couple of hours where I didn’t ponder the “what if, the results…”

My fellow RRP friend and I met in person for the first time for dinner on Tuesday evening.  Irish food in Chinatown.  Such a neat place for dinner and you honestly felt as if you had stepped into an Irish pub in Ireland.  Fellow RRP folks…well..we are one big family.  The safe space of not having to explain our voice, our life…knowing the person across the table from you gets it…people you have never met in person, but you would do anything for them…because, well, our community is small, but our  hearts are large.  Back to the red line I went…and whether I wanted it to or not…Wednesday was coming.

Lee flew in to DC on Wednesday morning.  The timing worked out so that he was entering the NIH just shortly before the clinic appointment where I would be given results…where I would learn if I went on to cycle 2, or if my time in the trial was coming to an end.  Doctors have terrible poker faces…as do the trial nurses and trial PA’s…no one even had to say a word.  It was written across their face.  The defeat and disappointment we all felt…so real. The idea that I would not respond at all…didn’t even enter my mind before clinic.  I was unprepared for that result…and maybe in an odd way that was good…would being a partial responder and removed from trial be harder to take in?  We chatted about what comes next (exit CT, labs, clinic on 3/28)…and what is being learned from my blood and tissue samples…in that moment I didn’t get emotional.  I was stoic…almost having this overwhelming desire to encourage the team….my emotions would wait…clinic was over…back to the floor I went and with a quick check-out for the afternoon, Lee and I were on pass.  DC in four hours would be the goal…Lee’s first trip into DC.

DC was a very welcome escape from all of it.  Just the outdoor air and walking from the Capital to the Lincoln Memorial and points in-between.  Walking through the WW2 Memorial, the Korean Memorial, the Vietnam Memorial….seeing quotes from those before my time here on earth…words of wisdom we need today in this sea of chaos swirling around us.  Albert Einstein and I had a little chat about RRP and I’ve enlisted him to help find a cure for all of the community…he seemed receptive to the idea.  Soon, my body said it was tired and back to the red line we went…and with a stop at Bethesda…dinner at Passion Fish.  We grabbed the floor staff/nurses a box of cupcakes from Georgetown Cupcakes and back to the NIH we went.  Surgery time would come soon on Thursday…cupcakes delivered, thank you notes delivered to staff/nurses and to my Mr. Wesley.

Due to my CT results, I would receive no more infusions and my Thursday would be a trip to the OR for a normal RRP debulking procedure.  Still stoic…still trying to be Ms. Positive Spin…I knew it was all a lie….but mask on…I pushed through.  Surgery came and went….the plus side of surgery with no infusion to follow was that I could take the steroid push in the OR to help me come out of anesthesia quicker.  Instead of sleeping until 6 in the evening, I was awake and functioning by 2:30pm.  Oh, and no research labs since I was on the door out….now back to Mr. Wesley…at some point in the afternoon, I decided I wanted to walk down for better food.  I did not know on the basement level was better food than the room service or second floor.  When I returned to my room, there was a note from Mr. Wesley.  He left me a note to look at his house…the house he was not going to be getting…something so simple that meant so much to him, he wanted to share.  That note is going in my hatbox.  It’s a treasure.

Friday was fairly boring with the exception of my love of Zofran….fewer team members came in on Friday….and as nurses learned of my response, we all worked through that.  I think that’s what makes the NIH so special…you are part of something bigger than yourself whether as a trial participant or NIH employee.  Your win is their win…your loss is their loss.  Lee and I felt prompted to shower the unit with a bit more love, so we sent a bouquet of flowers.  Nurses and the staff on floors are truly the unsung heroes of medicine.  They deal with us when we are often at our worst…and often without a single thank-you.  When I would walk by the flowers, later in the day, I would smile knowing those flowers represented the level of care I was part of.

Saturday was everyone on airplanes back to Chicagoland.  Josh coming in for break on a flight, me on a flight and Lee landing at Midway…a quick trip to Raising Cane’s and it was indoors under a blanket…where Zofran and I continued our relationship…still ongoing today….

So, that’s the recap of the week…now back to the realness and my thoughts now.

I learned something over the weekend from Lee…it seems in pre-op…I broke down.  I broke down in front of the entire team. I have no memory of this…but I am told I was talking about the journey and how I ended up where I had so prayed not to end up.  I’ve tried to see the perspective of this…that my coming home was not the same as someone being removed from trial that had stage IV cancer…where their coming home was “going home to die.”  I was coming home to the same life I had before entering the trial.  Yes, the drug has forever altered my immune system and we don’t know if I could possibly have a delayed response….there’s just so much unknown in the world of cancer immunotherapy. I can’t let my head go there…to that possibility…because the heartache a second time…I’m just not that strong.  I’m really not strong at all…I just have learned over the course of a lifetime how to wear the mask for those around me…..but if I am being honest…I envy most everyone around me..the ease at which they talk…the ease at which they can live life…life without counting down days until the next OR procedure…life always wondering if this scan is the one that shows conversion to cancer…life without having to wonder what changes are coming to healthcare in the US….life in a world where so often, those with visible signs of being “less than perfect” are in many ways sitting on the back of the bus.

As I said in the blog before this….nothing about this is well with my soul…and I don’t know when it will be.  I’m human and want to know why I have this disease and why I didn’t respond…when others have.  I don’t want to hear how it’s all part of God’s plan…the God I love….He can most certainly use everything to His good…but I don’t believe in a God that brings sickness to his beloved.  Sickness is from this fallen, broken world…but, I’m mad today….when I stop to think of all of it…the tears just roll down my cheek…so, I am working minute by minute to push it all back down….

Do I regret the trial?  No.  I would honestly do it all over again without hesitation.  It was the best shot I have had in my lifetime….and the things being learned in this trial….they could lead towards the cure I so crave…even though I know now that a cure doesn’t mean life without a trach.  For those responding, I am so happy for them.  That’s where I can go back to family….family that cheers one another on…but also sits in the grief of the disease when necessary…which is what I am doing now…something I don’t recall every doing before…letting myself sit in the grief of my disease and it’s impact on my life….maybe allowing myself this process will help me not grieve this disease again….where I decide to live a life without the mask.

One day, hopefully soon, I can be like Snoopy in the pic below….just not today….one day.

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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.

 

 

 

Adventures at Mayo

Mayo Clinic Mission and Values

Mission

To inspire hope and contribute to health and well-being by providing the best care to every patient through integrated clinical practice, education and research.

Primary value 

The needs of the patient come first. (from mayoclinic.org)

I just returned from my first “Adventures at Mayo.”  I didn’t know what to expect other than what I had heard from others and read on the internet.  How different can one medical system be?  Why is it difficult to get in?  What makes this campus in Rochester, MN so special?  And, why did I get in so quickly once the right department became involved?

A five hour drive from Chicagoland made more sense than trying to get on a plane.  By the time you factored in traffic, check-in time, travel time, etc…it just wasn’t worth the hassle.  So, off I went.  Excited.  Hopeful.  Nervous.  A little detour here.  I traveled across a good bit of the western side of Wisconsin.  I was amazed at some of the beautiful country Wisconsin has to offer.  Amazing rock formations, hills, small mountains that reminded me of Northwest Arkansas…just beautiful.  Having recently returned from the Eastern side of Wisconsin, I was pleasantly surprised.  Now if someone can explain to me Wis-Dells and all the waterparks!   OK, back to the topic.  So, I traveled and arrived the afternoon before day one of Mayo.  I found myself a tad bored, so after dinner a quick trip to Target was in order to help pass time.  I found myself in the book section and stumbled upon the “Grown Up Coloring Book” that has been around.  I, and my impulse shopping nerve, grabbed the book and proceeded to gather some colored pencils.  This ended up being my night.  I believe I missed my hobby calling.  Coloring.  I found it to be oddly relaxing.  I also found myself wishing I had about 100 additional colors to choose from.  I’m guessing I might be upgrading my color collection soon.

Soon, the night was over and it was time to head over to the Mayo Clinic for check-in.  Park. Check.  Try not to hit a pedestrian as you look at everything around you.  Check.  Coffee.  Check.  Walk in the front door.  Check.  Instantly realize this is something special.  Something different.  Double Check.  I proceeded to the area where I was told to check-in and get my picture made.  (Disclaimer:  I have been to many clinics.  Many hospitals.  It takes a lot to make me go, wow.)  Just in the lobby area, I went wow.  I cannot explain it.  You did not see patients walking around covered with stress.  You didn’t see a sea of white doctor coats.  You sensed a peace.  An assurance.   Next, over to the elevators for my first appointment of the day.  A beeper to call me for my appointment time?  Yeah!  The clinic’s are well organized, well ran and very patient focused.  My beeper goes off.  I first meet with the Otolaryngologist’s NP.  I was impressed with her knowledge, her compassion, her ability to ask the right questions in order to get a full picture.  I was even more impressed at how she was able to relax me during the dreaded scope.  Instead of telling me how I shouldn’t be, she worked with how I was and used whatever she had to use to help me relax.  Music, calm tones, quiet room….I mattered.  Next, in walks the Doctor.  (He had a student with him too.)  Seeing doctors all in suits is new to me.  You can’t tell which ones are students and which ones are seasoned at their craft.  The playing field isn’t about your coat….it’s about the patient.  I never really realized until this week how intimidating those white coats are.  They create a line in the sand in the relationship.  Trust in doctors is not my strong-suit.  I will analyze a doctor up and down and back again.  I suppose this is an unavoidable part of living with a chronic illness and having poor result/outcomes that in hindsight were because I trusted too blindly.  So, imagine my surprise, when within ten minutes, I had a full confidence in this physician.  I think God knows this character trait in me and knows that I needed that instant “click.”  More on that later.  After going over what he saw and what he suggests, we agreed that more needed to be known on my anatomy that couldn’t be visualized by scope.  CT.  Scheduled.  Coordinated with next appointment so that both CT scans would be done at the same time.  Three months ago I heard a seasoned ENT here in Chicagoland say that my anatomy was the “worst he has ever seen.”  I am thankful today for a meeting where my anatomy did not shock or scare or worry the doctor.  That my virus history wasn’t new to him.  I’m a fan.  Within one hour of my appointment, his dictation was ready on my Mayo patient portal.  Impressed.

I had about a two hour window between appointments on the first day, so lunch was in order.  Right outside the clinic area is a beautiful area known as “Peace Plaza.”  From the lobby I could see a restaurant called “Chesters”, so I decided it was fate for us to meet.  (I am so thankful I can eat alone.  It has served me well in my lifetime.)  Seated.  Cornbread with maple butter???  What!!!!  Yes, I will take a slice of that.  Slap your Momma good!  (Don’t slap your Momma, but you get my idea here.)  What to eat for my meal???? What to eat???  Salads.  That sounds good…so I went with the Chester Chopped Salad.  Seriously good stuff.  In house roasted chicken, apples, fresh spring greens, eggs, homemade croutons, sweet corn and bacon….what is  not to love on that list?? Time for pulmonary.

Back to the clinic I went and up eighteen floors….I seriously don’t like anything above about ten…but ya gotta do what ya gotta do.  The second time of being called back earlier than my appointment time…seriously, I think that in itself is a five star rating!  Pulmonary is not my favorite department.  I can say that about every pulmonary department I have been to.  I can’t explain it.  It seems to be the department I struggle the most in with that all-important “click.”  After a review of  my history and a chat about ideas of where and what we need to do, I was rescheduled for a longer appointment on day two after more tests were available.  Ok…here’s where I am going to give another shout.  I was not charged for day one clinic in this department.  Even though it was a good forty-five minutes, I was not charged.  Doctor told the desk to make the second day my “official” appointment.  A different way of doing medicine.  I told ya.  Day one at Mayo was coming to an end and this chick needed to just go and put her feet on the bed for a bit and process the day.  Soon, hunger set in and the decision of where to eat began swirling around.  Everyone kept telling me I had to try wall-eye…..slight issue….I only like two fish.  Catfish cooked Mississippi style and Halibut.  I decided I would at least consider it, so I thought hey…there’s a Canadian Honkers (Ok…I laughed…it’s just a hilarious word…Honkers.) right by me.  I walked in, grabbed a table….menu.  Began to realize this was just a Denny’s type establishment in disguise.  No…Kim can’t do this.  So I ever so politely excused myself and opted to go back to Chester’s where I had the most wonderful lunch earlier in the day.  The homestyle turkey dinner and a delicious dessert of banana cream pie and this gal was full and ready to stick a fork in this day.  I remember 9PM and I remember 9:45PM, but not anything in between those two times….so it was an early night.

Day two started early and included a bit of fasting in order to be ready to the contrast that would be needed for the tests.  Anything that involves the need to start an IV line causes me to have near panic attacks.  I suppose that’s just part of the journey when your veins are full of scar tissue and the idea of enduring multiple sticks to hopefully thread an IV are your norm.  Normally, an injection of lidocaine at the IV site along with warm towels is the only way we “might” get a thread on the first try.  The precious girls up in the IV room kept assuring me that Mayo was different…to trust them…they could do this without the numbing medication.  So, my arms were wrapped in warm blankets, then it was time to find a vein.  She quickly saw the vein she wanted and decided to spray a topical numbing medication on my skin just to help keep that area of skin remain relaxed (I believe it was honestly due to me being a baby in the IV room.)  Deep breath….and it was IN!  Zero discomfort.  It was IN! I wanted to hug her.  Now that I know what its supposed to be like, well, Mayo is different.  Time for scans.  So, honestly, how different can scans be from one institution to another?  It’s a scan.  Even that is different.  Most was the same until it was time to inject the contrast.  My arm placement was different, the way that they administered the contrast was different (No sensation of you just well….if you have had contrast you know what I am talking about here.).  When finished, I was handed a bottle of water to start my four bottles by the end of the day flush.  Different, yes indeed.  Back to Pulmonary.

I wish I could pin point my issue with Pulmonary everywhere I go.  Is it that I know too much about what works and doesn’t work that flags are always going up?  Is it that I’ve already decided what route I want to take and haven’t found the one that says it without me bringing it up first?  Is it just the nature of a pulmonologist and their personality?  Is it just me and my over-thinking nature?  Or is it that this isn’t the department I should be in first….that maybe the process is off?  We went over the scans from the  morning and decided that we were missing a piece of the puzzle in order for him to make a decision on where to go from here.  So, I am to get that puzzle piece sent priority mail directly to his office.  Then a meeting will occur where all the information will be sorted through.  Looking for the smallest of change…a clue.   And that was the end of this first Mayo Adventure.

Where we left things at Mayo.  Otolaryngology has their scan results and has emailed me their plan.  I just have to set the date for what they want to try.  Pulmonary-we are on hold.  I learned a few things that I didn’t know while there…some things I should have known for years…thankful that I know them  now.  It really is a different way of doing medicine.  You can’t really explain it…you just have to be a part of it.  The level of care from front desk to the top is greater than anything I have ever experienced.  Watching patients and such sit at the grand piano in the lobby and play hymns and sing-along songs…watching women walk up and join in harmony…..while the sun shone brightly in through the beautiful windows…just a peace that you normally don’t feel in any clinic setting.  I’m a fan.

It was time for the drive back to Chicagoland.  It was a time to process the visit and logically go over the events of the past two days.  Was my uncertaintity of the Pulmonary a personality issue, a flag, me over-thinking….what was it?  I really don’t know much more in that area than I did last week….was it simply due to that missing puzzle piece?  Then the phone rings and I let it go to voicemail.  It was MD Anderson.  About the time that the Mayo process started, I had made it past the gate-keepers of MD Anderson and they had requested my medical information.  I was in.  The appointment was mine.  Instantly, I am wondering if this is God’s timing to my questions…or simply a distraction from where God had led me already.  I sat on this voicemail until the next day.  Praying over wisdom, discernment….so I returned the call.  They see my medical file a little differently than Mayo.  I sent out a SOS to a couple dear friends and made that phone call to my Sis.  I prayed for just wisdom….take it..not take it…why are they starting me in a different department than anyone else?  Remembering that MD, like Mayo, doesn’t just take appointments.  It’s not like calling a local specialist.  My file meets their area of expertise….Ugh…grown-up life..sometimes…just saying.

Long story short, I am taking the appointment in Houston.  I could have gone in two weeks, but in fairness to the pulmonary folks at Mayo and my need to see their plan, I have opted to go early September.  After that appointment, I plan to allow Mayo Otolaryngology to proceed with their plan.  At MD Anderson, I am starting in thoracic oncology.  I’m starting where I would be treated.  Different approach.  Different eyes on same file.

In all of this, I am dealing with a touch of anger.  I am angry that everyone isn’t allowed the level of care I received at Mayo.  That should be the standard for each of us…no matter where we are.  I’m angry that doctors don’t refer patients when the doctor isn’t fully qualified.  Learning something from a book while in medical school does not qualify you.  I’m angry that any patient has to feel that they don’t have knowledge or power in their healthcare.

I’m also dealing with gratitude.  I am so grateful that we have an insurance plan that allows me to seek the very best care I can find.  I know many don’t have that option. That should change.  It needs to change.  Geography and income should not determine your medical outcome.  My life is of no greater value than the person next to me….so I am thankful that I can go.  I’m thankful for the ability to travel and the huge support team I have in my RRP family to help guide my way.  People I have never met that I have cheered me on, supported me, provided vast amounts of information….I am thankful that I am not fearful of traveling alone or facing doctors and questioning their words.  Grateful.  I am thankful for friends and my family.

I am in awe of God who has clearly guided each step of this journey these past few months.  I do not know what tomorrow will bring, but I know He guides my steps and has gone before me.

Psalm 121

I lift up my eyes to the mountains—
    where does my help come from?
My help comes from the Lord,
    the Maker of heaven and earth.

He will not let your foot slip—
    he who watches over you will not slumber;
indeed, he who watches over Israel
    will neither slumber nor sleep.

The Lord watches over you—
    the Lord is your shade at your right hand;
the sun will not harm you by day,
    nor the moon by night.

The Lord will keep you from all harm—
    he will watch over your life;
the Lord will watch over your coming and going
    both now and forevermore.

So, now we wait for the Mayo plan and prepare for Texas.  I plan to eat Tex-Mex daily!  Texas brings a chance to hang out with my aunt, my sister and hopefully some of my Texas friends.  It’s almost surreal that where my RRP journey began…it’s going back.  Life really is a circle…..and somehow we are all woven together within that circle.

Being a patient is hard work…..

I’m tired.  There, I said it.  I am not strong.  I am not tenacious.  I am not some super-human that is out in this world over-achieving as life throws more health lemons my way.  I am tired.  I am just a good actor to the outside world.  I have a feeling this resonates with anyone dealing with a chronic illness…..especially one that requires a seemingly never-ending relationship with operating rooms, various tests..all of it.  Before I began to blog, I honestly didn’t talk about it much.  I was like the ostrich who just put her head in the sand and went through life ignoring it as much as I could.  I suppose I still do to some extent, but realizing I have this huge family sharing this walk has given feet to my words.  So, today, it’s going to be a little chat about how being a patient is well, hard work.

In a perfect world,I, the patient, would walk into the exam room fully confident that the doctor would be well-educated, well-trained, and have a patient load that would indicate that my life is in good hands.  When you  have  a rare, chronic condition…even the experts aren’t always experts.  So, you walk in armed with years of paperwork, scans, research….you take on the role of the “most educated” and the only person in the entire world that has your best interest at heart. For lack of a better way to say it, it just stinks.  Yet, it’s the life you have…and you live it.

You sit in your car as you drive back home wondering if it’s too late to get that medical degree.  Wondering where the zeal for new ideas, research, outside-the-box thinking is lost as a doctor gets years of practice under their belt.  When do doctors stop being the dreamers of all that is possible and become so inward focused that even the remote possibility they could be wrong..or maybe not know something is unspeakable?  And if you doubt or question, somehow it’s that you have an anxiety issue….anxiety in that I don’t want to die…sure.  If that’s what we are calling it today.

In some ways, life with a rare chronic condition was easier before the ability to “know more.”  You went in, whatever was said or suggested-well, that was it.  Wrong, right, dangerous, safe…..didn’t matter….because only doctors had the information and you only had the information that they were willing to share.  We don’t live in that world anymore.  We are told that we, the patient, drives our healthcare…but we really don’t.  We can have all the research in the world….and you still can hit the brick wall of “I’m the doctor, I know all….this is rubbish.”  My favorite right now is, “this is such a rare condition, unfortunately we lack the expertise in caring for this.  Best wishes. ”  I appreciate the honesty, as I’ve had doctors treat me that well….in hindsight…should not have.  Yet…still.

It is estimated there are about 20,000 cases of RRP in the US and maybe up to 17% (huge unknown here due to the little research in pulmonary spread)  of those go to pulmonary involvement and then estimates of 1% of those will convert to squamous cell carcinoma. Pulmonary RRP acts like cancer in so many ways, even if the tissue remains benign.  There is no cure….none.  The Gardasil vaccine series shows promise in that if we can achieve mass vaccination rates, we could reduce or possibly even eliminate future RRP cases…yet even that is tied into politics, fear medicine and somehow attached to morality.  (Getting a vaccine does not make you sexually active….that’s just silly.)  This is the life I live….the life God walks me through…..the life that sometimes has me paralyzed with fear and anxiety over all the “what ifs” on testing, treatment…..the life that causes me to doubt those that are to be trusted with my care….

So, I am not strong…I’m tired…but life is to be lived and sitting is not an option.  I wonder just how many of us with a serious, chronic condition feel the same way…..but each day wake up and put on our mask.  Do you?

John 14:27  Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.