A Shift In The Weather

 

A Shift In The Weather

In My Bloodstream: Lisinopril,  Amlodopine,  Omeprazole, Tamsulosin
On The Stereo: Hold On To Me: Lauren Daigle

Wow.  What a week we have had.  Nothing followed the plan.  I should be prepared for the sharp turns off the given path.  We have had many.  But here we go again.  I was looking for my personal zephyr to gain strength and help me navigate my future.  Not quite yet.

My plan was to re-visit Dr. Sarnaik, the gatekeeper for the new study, and he was to  take some more measurements and that was that.  There had been no commitment of a decision change - only a request to have further discussions.  

I took the teacher to school in the morning, returned home to shower and shave, and left for my 12:15 appointment, on my own.  Kat had wanted to go with me, but again, I refused her offer.  Nothing of consequence was going to happen.  I did dress in some nice duds, as I had looked like a homeless person when I drove Kath to her job, and when I picked her up later, I wanted her to see me as human again.

Everyone was on time for the meeting.  No waiting.  This was shaping up to be a short visit.  Which was good for me, as I had planned to make a Costco run, on the way home.  The usual bulk stuff - butter, orange juice, paper products and alcohol. Things that take a family of two a month to use.

The conversation began with a longish review of my melanoma history.  The doctor did not understand some of the earlier notes on my cancers.  He was confused by several of the diagnoses and treatments, and sought clarification.  I provided what I could.

He wanted to know more about my immunotherapy trial.  He drilled in on the side-effects of the treatment and how I had handled them.  He was concerned that I had contracted pancreatitis while I was on Opdivo, and given the similarity of Keytruda, thought I might have the same problems with a new round of infusions.  Here, I stopped him.  He was under the belief that my trial used the same protocol that is now currently used.  He did not know that I was on the trial that had used the two drugs in reverse order.  My pancreatitis occurred with Yervoy - not with Opdivo.  That was great news for him, as his worries were being reduced.  Considerably.

In fact, he was incredulous that I had gone so long without a problem.  I did mention that I did have a number of in-situ melanomas,  but he did not regard those as serious.

What he did not see in the reports, for whatever reason, was that I had been cured.  I thought that all, or at least the majority of those of us in the trial, had all been found clear of melanoma.  Apparently, this was not true.  Only four had their melanoma eradicated - completely.  I was one of them.  

The doctor was impressed.  He was amazed that I had gone some seven years without recurrence.  He mentioned that several times.  In his eyes, my experience was unique.  I was one of a kind.  He told me that the study group had loved my outlook on life, and my positive attitude.  He thought that would be great help in his new program.

So then he talked about the selection process of the study.  He re-iterated that the new drug, call PD10, had not been FDA approved, had little history and had risk, the level of which varied widely.  He noted that I had lymphoma, and that would normally eliminate me from participating in the study.  He, and others, had applied to the study sponsor, asking them to ignore that issue, as the lymphoma was under control, and should have no bearing on the trial. They had agreed.  That would not be problematic.  

However, I still had untreated cancers from my last visit with Doctor Harrington.  Dr. Sarnaik asked why the plastic surgeon had not excised the cancers, as had been the plan.  I told him that Dr. Harrington had been more concerned with my brain cancer than with operating on the other sites.  My opinion, I said, was that he believed that putting me through discomfort for those minor cancers, did not make sense, given that my head was going to explode.  If the major problem could be resolved, the rest would be taken care of, later.  At least, that was my take.

He kind of had a laugh at my review, and agreed that it made sense.

However, he said, the sponsor would not agree to allowing me into the trial, with unresolved pathologies.  These cancers had to be excised before I would be considered.  Crap!  Seriously! Crap!  How could we have known?  And that would take time.  I saw my chances sliding away.  Again.

He continued to discuss the perils of the needle injections of this new drug.  He thought he could deliver the drug through the melanoma which had been found on the outside of my ear canal, in front of my left ear.  A lymph node.  He thought there would be serious risk involved.  He estimated that there would be hemorrhaging, and I might lose my hearing.  Good news, I said, that ship had already sailed.  I told him of the mastoid operations in my youth, and that most of my hearing was long gone.  That, somehow, was considered good news.  

When I was eight, I had spent six months in hospital  to allow a series of life-saving operations to remove a tumor which had been pressing on my brain.  And my survival of that trauma may well open the door to my allowance into this study.

The Lord does work in mysterious ways, I have heard many times, but this was a ridiculous turn of events.

And we continued.  Dr. Sarnaik leaned in.  He became more intent on the problems to come. He believed there could be incredible collateral damage to the area inside my auditory canal.  Hemorrhaging and bleeding  topped his concerns.  But he advised me that if we got into real trouble, he could quickly get me into an operating room and he believed he could repair the damage .  He told me that he would take that risk.  He wanted me on the study.

And he asked me where I now stood.

I had been in a life-long battle with cancer, and I had no intentions of quitting now.  I said I had already signed the necessary wavers and agreements, and I was ready to push ahead.  As dire as the side effects might be, another opportunity to live, was worth the risks.

That being settled, he thought I had better get started on an infusion.  The clock was ticking.  He asked if he could step out of the room to call my oncologist and get agreement on my path forward..  By the time he returned, I was scheduled for a blood draw and had a date at 3pm with the infusion department.  It was now1:30.

The decision would be to begin infusing, and, as soon as the cancer surgeries were completed and clean, the surgeon would add PD10 to my schedule.  Better than doing nothing, I thought.

I thought it made sense to get the blood draw completed first, so that the samples would be sure to pass through the lab and the results would get to the infusion center for my 3pm appointment.  The blood was taken and the pic was left in my arm, for use in the infusion still to come.

I grabbed a bite to eat and headed to the waiting area, in hopes that I may get an earlier time.

At 2:55 I was texted by the blood draw center.  Please return.  I had no clue why I was needed.  I returned to the blood draw area and was told the blood in one of the vials had coagulated.  It would need to be redone.  There was a twenty minute wait.  And then, they called me in.

The nurse could not get blood from the pic line, so two more attempts were made.  Finally, a tube was filled, labelled and carried to the lab.  I returned to the waiting area again.  And waited.

At 4pm I was called in, and after some serious protocols, the Keytruda was delivered to my room and my infusion began.  

At 5:30 Elvis left the building. My day had not gone as planned and I was late.  For everything.  Costco and Kath would be upset.  I called Kathleen and told her to get an Uber home.  She would wait for me.  I flew.

That day, our dinner was even later than usual.  We are notoriously late diners.  And we were both somewhat subdued.  Not a typical phenomenon in our house.  Things had happened.  More was going to happen.  Uncertainty loomed even heavier over our heads.  We did not yet feel like we had direction.  Our future was not clear.  Our destination was unresolved.

One step at a time.

Wednesday I played golf.  I walked the course, as usual.  The group in front of us were dragging their butts and the weather was brutally hot.  We were on the executive course, with no par 5's, and it took 41/2 hours to complete our game.  I was tired.  When I got home, I was exhausted, and had to lie on the couch.  I was weak - very weak, and I could hardly move.  I was still there when my bride arrived home.  

A nurse from the infusion center had called before I had left to play, and I had told her I was fine.  No side-effects.  She seemed mildly surprised.  "Not even diarrhea?" she asked.  Nothing, I said.  She thought that wonderful.  Now time had made me out a liar.

Dinner was not much eaten and bedtime was unusually early.  My girl was not amused at my stupidity.  I suggested that was not atypical, and that trait was part of my charm.  Again, not amused.

Bed was hard to get into and even harder to get out of.  Thursday was starting slowly, but recovery was underway.  I was looking forward again.  The events of yesterday would become wisps in the morning sun.  My world was back to normal.  Watch out.

Friday golf with the relics came and went without incident.  I had thought of walking again, but reconsidered.  Cancer was trying to kill me.  There was no reason to let Kath step in and take me out early.

I apologize.  My story was too long.  And without the humor that makes us smile.  My focus has wained.  I continue to try and get my chin up.  I am better when my sails are set and the horizon is clear.  My head is filled with crap and I need to give it a good flushing.

I will do that,

My dragon has returned and he had better be prepared.  A fight is coming.