Full disclosure:  I am not "trying" to be "inspirational" in any way, nor am I "trying" to be "strong"....though people tell me that I am both of those things, perhaps more than I realize, they say.  I am simply a woman who has been diagnosed with cancer and I am simply trying to navigate my way through this new territory to find my way to the other side and survival.  Thank you to those of you who inspired me to start this conversation and document my journey.

 

The chapter of my life that I find myself writing currently began on Tuesday, May 16, 2023.  Well, that's when I became aware that this chapter had begun.  

 

On that morning, as I was washing my face, my fingers detected a lump in my neck right under my left jawbone.  It had not been there the day before; it literally appeared overnight.  It was quite sizeable, perhaps the size of a small walnut.  

 

I felt absolutely no pain and I did not think too much about it.  I presumed that perhaps a troublesome tooth in the vicinity was about to act up, abscess, give me some grief.  As I always had done, I carried on as usual...hopped on my bike, rode to the pool, swam a couple of miles, and cycled to work.

 

I waited for one week.  Nothing happened; it did not change and it gave me no pain.  I just kept swimming, but I knew that it should not be there and that thought nagged at me a bit.  On Tuesday, May 23, I decided to stop at the Castle ER on my way to work to have it checked out....after I'd swum, of course.  I thought I'd get an antibiotic and soon be on my way to work, but that is not what happened.  

 

The ER doc was puzzled; a blood draw did not indicate infection and a CT scan was "inconclusive."  I learned my first new vocabulary word:  lymphadenopathy (swollen lymph nodes).  Evidently, what I had.  

 

She referred me to an ENT, Dr. David Schoppy, whom I saw on Thursday, May 25.  After a thorough exam, including the insertion of tubes and lights down my nostrils and throat, he was puzzled, too.  He prescribed me an antibiotic, just in case, and ordered a biopsy.

 

There was a lot of frustration in trying to get the biopsy actually scheduled; eventually, it was finally scheduled for Thursday, June 8.  But in the meantime, the lump became enlarged and inflamed and quite painful.  On Tuesday, June 6, I called Dr. Schoppy and he instructed me to go to the ER, where he met and admitted me to the hospital in order to both manage the pain and to facilitate the biopsy.  I remained awake as a team performed the biopsy and I stayed in the hospital overnight for observation and for pain management.  Morphine took care of the pain, which had escalated dramatically, and a steroid worked to reduce the inflammation.  The next day, I went home feeling alright; I resumed my swimming, biking, working routine.

 

On June 8th, Laura and I were strolling Ead in Kailua town.  It was late afternoon and the outdoor market was happening.  We were in the Mahina shop, one of our favorites, just browsing.  My phone rang and it was Dr. Schoppy.  As I stepped out of the store and answered the call, I heard it in his voice.  "Karen," he said.  His tone was serious.  "It's cancer, Karen," he said.  In a lymph node; there are about 450 lymph nodes in an adult's lymphatic system, a virtual highway by which cancer cells can easily spread.  

 

I heard the word "malignant," and I sat down on a nearby bench at an outdoor table.  I remember seeing Laura coming towards me, concern on her face.  I put the call on speaker so that she could hear and participate.  Dr. Schoppy said that there was much to do and that we must act quickly.  OK with me....let's get it.  Laura's nose was turning pink as she tried to stifle tears.  He wanted to perform surgery as soon as possible to remove it; he said it would be a long surgery and that he would book an operating room for as soon as possible.  I was thinking, "OK, great.  Let's do surgery tomorrow....Monday...next week.  Let's go."  Sounded simple enough to me; just cut it out.  I really had no idea of what was ahead....how much had to be done and how long it would all take. 

 

The surgery was scheduled for July 5th....a month away....not nearly soon enough for me.  What would be happening inside of me during that holding period?  Would the cancer be growing and spreading?  That thought was quite unsettling....I definitely wanted the surgery to happen much, much sooner, but Dr. Schoppy said that it was going to be a long surgery and that I needed to also consult with a plastic surgeon/nerve specialist who would partner with him and perform the surgery with him.  I guess I was thinking that I was going come out of it misshapen, but I didn't care.  I just wanted it gone.  Gone gone gone....ASAP.  

 

Yep, in the meantime, there was a flurry of activity.  Dr. Schoppy made the referrals to the plastic surgeon and the oncologist.  He notified my general practitioner.  A CT scan was scheduled; an MRI was scheduled; a PET scan was scheduled.  There were seemingly endless blood draws.  In an attempt to maintain normalcy, I continued to swim and to go to work, but the first big changes in my life happened:  up until then, I had never kept my phone ringer on nor did I ever, ever check my voicemail messages.  Suddenly, I was told to keep my phone nearby, to keep the ringer on, and to always answer calls.  It seemed to be ringing constantly...doctors, the hospital, the imaging facility calling with questions and scheduling dates and times.  It was overwhelming and going to work became very stressful, as I was not allowed to use my cell phone while I was at work (tutoring students one-on-one), but I didn't want to...I couldn't...miss any calls.  I began to discover how extremely challenging it is, on this island anyways, to reach and to schedule appointments with health care providers. 

 

Reluctantly and sadly, I decided to take what I thought would be a short break from work; I thought that I would have the surgery, and likely some kind of treatment, but that would be it...then I would happily return to work. 

 

Late in the afternoon of June 22, Laura drove me to Insight Imaging in Honolulu for the PET scan.  A PET scan is a positron emission tomography imaging test.  I was required to fast from midnight on and I was very, very hungry by the time I got to the location.  A special dye containing radioactive tracers was injected into a vein in my arm and flushed throughout my body, and then pictures were taken.  The purpose of this test and the pictures was to reveal any cancer that had spread to other parts of my body.  When the test was over, I was hungry...and temporarily (for 24 hours) radioactive.  No hugging or close contact with anyone.  

 

The next morning, Friday, June 23, I endured the dreaded MRI.  It was extremely claustrophobic and NOISY in the tube, but it wasn't nearly as awful as I'd remembered (I had one long ago).  The technicians were great and provided me with earphones and music of my choice; Laura had given me one of her soft eye masks to bring and wear.  

 

Later that day, Dr. Schoppy called and we had a long chat.  He had received both the PET scan and the MRI results; the good news was that there was no cancer or masses in my brain...my brain was good.....whew.  More good news: the cancer in my neck seemed to be local to one lymph node which could/would be removed with the surgery. 

 

There was some not good news too:  a rather large mass was detected in my lung and it would have to be biopsied. Dr. Schoppy said that this was/could be very serious and that he would be consulting with all the doctors on my team.  Serious. The PET scan also showed... something...in my eye; I would have to see an ophthalmologist. OK, at least it wasn't ALL over my body....but the lung.... 

 

A very painful lung biopsy about two weeks later confirmed that the cancer had indeed spread to my lung: 

 

Malignant.  Metastatic.  Stage Four.  

 

Those were difficult and jarring words to hear.   

 

The scheduled surgery was aborted.  The recovery from such surgery would be four to six weeks, during which I would not be able to begin treatment for the cancer in my lung.  The doctors deemed that it was best to as soon as possible begin a treatment protocol which would target both areas of cancer.

 

The six weeks between when I was diagnosed on June 8 and when my treatment began on July 21 were very challenging and frenetic.  I endured biopsies, CT scans, MRI’s, many exams and consultations with at least ten different doctors, and more blood draws than I could keep track of.  I went to a doctor or the hospital every day.  The unknowns….what was happening inside my body, how quickly was this spreading, when would treatment begin, what would that treatment be, what would my life be like, how long would I live….were unnerving.  I think those were the hardest days of this whole thing.  

 

On Friday, July 21, I received my first Keytruda immunotherapy treatment via IV infusion. 

 

Once treatment began, the situation became much more manageable.  Weekly blood draws, monitoring of my vital signs and weight, and visits to the oncologist are part of my new normal.  The side effects are fatigue, muscle aches and soreness, dehydration, stomach upset/indigestion, and vitiligo…and are...manageable....able to be managed.  They are the price of my survival.  

 

Each day, I wake up grateful.  I get my mind and my heart and my soul and my spirit “right”....I must keep my mind right.  Sane.  Positive.  I believe that my emotions and also my body will obey my thoughts, so my thoughts must be right…true…strong…positive.  

 

Obviously, some aspects of my life have changed, but in the most fundamental ways, nothing has changed.  Before June 8th, I can honestly say that I was living my happiest, healthiest….emotionally, mentally, spiritually, and physically… and most grateful life!  THAT has absolutelyl not changed.  I am still happy and healthy (OK, so my body needs a little help right now) and grateful! 

 

Most importantly, Jesus has not changed, and so why should my faith in Him change?  He has not changed; my faith in Him has not changed.

 

I am still able to ride my bike and I am still able to swim.  Sometimes, I get tired and need a nap afterwards, but I can still do those things and I can...and I do...do them well.  Really well.  Longer and stronger than ever.  Everyday.  Every.  Day.  

 

I refuse to stay inside and act sick...to lay down and wait to die.  I refuse.  

 

When I told one of my friends of my situation, she wrote back to me via email that she was “incredibly sad” for me….and I shut her down right away:  STOP THAT IMMEDIATELY, I told her!  I do not want anyone feeling sad for me!  I am exceedingly blessed and, here is the important thing:  Christ lives in me!  (Colossians 1:27)  Evil cannot co-exist in me when Christ resides in me!  I rebuke the devil and he must flee.  EVERY knee shall bow and EVERY tongue confess.  Worry is unbelief; I am a believer.  My daughter…her idea…and I recently got inked on our wrists:  Psalm 112:7….I do not fear bad news; I trust the Lord to care for me!  Sometimes, we just look at each other and say, “1127.”  

 

I thank Jesus for His victory every day....for His authority, ability, and willingness (Matthew 8:1-3) to heal me...for He is in me (Col. 1:27)

 

That's my story and I'm sticking to it.

 

This blog is the story of my journey of swimming through cancer......