Denial Frustration and Fear

I admit I am in denial.  Reasonably, I leave that excuse at the door of hope.  After hopeful Chemotherapy results for two consecutive weeks, Carleton and I were thrilled to see him walk without a cane.  Unfortunately, the chemotherapy, while beginning to destroy the cancerous tumors in his body, destroyed the remaining white blood cells available to ward off infection.

On Wednesday, after a visit from Dr. Caperna, at our home, he urged Carleton to seek admission to UCSD Hospital.  We called the Clinic to assist with a direct admit, but since it was so late in the day, 4:00pm, no doctor was available.  Management at the Clinic has now refused to allow Dr. Caperna, a doctor that gladly served there for many years, authority to request a direct admit.  In fact, the several visits he has made to us, personally, we have learned, the Clinic will not process due to the management feeling that it is a competitive threat to have Dr. Caperna provide home health visits or assist with case management.   But, I digress.

After the hour of unsuccessful attempts to reach the primary doctor at Owen, or the Cancer Doctor for his care, no nurse was able to provide a direct admit.  So, Carleton and I ventured to the UCSD Emergency room to wait for admittance, knowing he had no immune system to ward off infection.  Were it not for the advocacy of Dr. Caperna to alert Emergency Room doctors of our arrival, it may have been longer.  Instead, Carleton was admitted in less than 30 minutes.

Nurse Robin, after the initial visit by the doctor (one of three), began accessing the port Carleton had for the chemotherapy, using it to access blood and place antibiotics.  She then started an secondary location for an IV, to provide further antibiotics.  Soon, a Christmas tree of bags was flowing into Carleton.  Though, due to the number, there was conversation with pharmacy about what combinations could go together appropriately.

Two doctors then arrived, tall and masked, to ask Carleton questions, and ultimately if his lungs should fail, if they could put a tube down his throat.  Secondarily, they asked, should his heart stop, not they expected this to happen in the next few hours, what were his wishes around resuscitation. 

Normal questions, I’m sure.  In fact, we have a DNR statement.  But, to hear two doctors ask it the way they did cause me to lose what little of a poker face I can manage in an emergency room.  Carleton freaked, naturally feeling panicked and unsure of what he wished.   Fortunately, Nurse Robin said he had time to make his decision.  We talked.  Knowing all that had been going on, his single concise thought was expressing his biggest worry of being a burden on me.    

I stayed for 6 hours, standing on my feet, or should I say, swaying on my feet.  I have had limited hours of sleep for months unless I crash sleep to catch up.  Carleton’s brother Brad showed up a few hours later, joining us in the tiny room in Emergency, while we waited for a room at UCSD.  At 230am, Brad walked me to the car, I gave him some things for Carleton, and he questioned how I kept moving, working, volunteering, while having my own personal challenge that was just finished.  I smiled and told him Carleton thought I was a super hero.  And, frankly, I like that concept, so why not encourage it?

Fast forward two days.  I had spent most of Thursday, arriving late in the morning, to a small army of medical professionals just leaving Carleton’s room.  He had an anxiety attack when he awoke to 8 doctors surrounding his bed.  Wouldn’t you?   Most of that day, I spent in the room except to steal away for a Chocolate Shake delivered by Marci Bair.  Amazingly, she agrees with me that a chocolate shake is not complete without fries.  My personal belief is that together they make a complex protein, but don’t quote me.

Friday Carleton was given more news.  There were some areas of improvement, some areas of discovery, and no areas of good news.  Carleton and I have one area of major agreement.  We are stunned by the set back.  We had thought things were headed up, better, he was doing so much better before Wednesday.

Saturday, Carleton requested repeatedly to anyone who entered the room that he wished to go home.  He wished to sleep in our bed.  Tied to so many lines of antibiotics, he had to call a nurse to go to the toilet.  He felt humiliation and frustration.  At 3pm, I arrived at the hospital, his Dad and his brother in the room.  He begged all three of us to break him out.  I think my line will famously be “not today”.  In that statement, his Dad and brother quietly agreed. 

Not today.  I do not know if you understood that term, but to me, it is a heart breaking statement.  For “not today” means that staying in the hospital means there is still hope.  If I were to agree to take on the medical establishment and take Carleton home, it would mean there was no longer hope, in my mind.

He yelled at us in frustration.  He cried, he was in pain, discomfort, from some lesions, from spots where there was infection.  The Earth was warring against his body and his body has no immune system, just a Christmas Tree of Antibiotics.  Gowned as we all were, he sat up, reached his arms toward me, choosing me.  From the end of the bed, I bent over, held him, he sobbed, then gave up his requests to be freed and fell into a deep sleep.  I think he just needed us to know his frustration at the betrayal.  The betrayal of his body, the betrayal of his independence, the betrayal of our collective ability to let him be anywhere but where he is now.

His dad and I left together.  We quietly walked through the hospital.  He asked how business was.  I was honest, overwhelmed with the competing demands of Carleton.  He laughed.  Him too.  We expressed our mutual quiet anger over the situation.  We worried together about what next steps might be necessary.  Needless to say, I called Mom.  I needed a dose of my reality and Mom is certainly someone who, like me, tells the truth, acknowledges the emotions, she honors the emotions, keeping them safe between us.  As we talked, I realized that Carleton chose me of the three men in his life.  And, his family has recognized me as his.  And, I was grieving that this was not very fair.

I returned later Saturday evening, to hang with Carleton, alone.  At one point, we relaxed next to each other.  Not comfortably, since there were a myriad of plastic hoses I feared I would hinder, pull or bend.  And, after more reports of infections that could be addressed by antibiotics, Carleton whispered two words.  “I’m scared.”  He just doesn’t think he is lucky twice and he pulled this off last July.

I hugged him.  We cried.  See, I’m not scared.  And, on one thing, I disagree with Carleton.  He is lucky.  And, his luck will never run out.  Not for Carleton and not for me.  He has hope.  He has me.  He has a family that cares.  And, no matter what happens, we will be there.   And, that is one thing that denial never can destroy.