To blog or not to blog? Curse of the Caregiver

 'It's the most aggressive type of cancer.'

 said the world-renowned head and neck surgeon at Mayo Clinic.  "It's rare: salivary gland adenocarcinoma in situ.   You have one year to live.  You should get your affairs in order."  With that, he turned and left the room, followed by six students scribbling in their notebooks as they trailed after him.  Only one bothered to look back at us with a sorrowful expression.  

"Did he just say that?" Terry asked me, and I suddenly realized that both of us had sunk to the floor on our knees upon hearing the news.  Stunned silent, I shuffled closer to him and gathered him into my arms and we wept together.  I do not know how long we remained in that room, locked together in utter shock and grief.  I do remember feeling like the elevator ride to the ground floor took an eternity and that everyone in the various waiting rooms and lobbies seemed to be staring at us as we left the building.  Puffy faced, red eyed and tear streaked, we were an obvious mess.

There's no good way of delivering news like that, especially to an otherwise healthy, vibrant 48 year old man with two young children at the peak of his career and enjoying life.  I did, however, expect a lot more from a renowned surgical specialist at the world's best teaching hospital. One week earlier while reviewing MRI results, this same man had scheduled us for surgery on Christmas Eve, assuring us that these things were always completely benign and operable.  'There's no point.  He's already stage IV.' said the surgery scheduler the following day as he handed me a sheaf of new medical orders:  Nutritionist, orthodontist, phlebotomist, radiologist, oncologist.  Oh, and a psychologist and a social worker.  It was the first of many, many lessons for both Terry and myself, and marked the end of what had been an idealistic existence. 

  I'm still grappling with what it means to be a 'caregiver', but I believe I'm already a better person for the experience thus far, and that I'm a pretty damned good caregiver. I suppose it may be many years before I can look back and adequately judge my ability as a caregiver, and I refuse to look up the definition of the term as a comparison.  I really don't care what conventional wisdom thinks a caregiver should be, and this is what I've cobbled together based upon my own experience:

Patient advocate and healthcare champion.  Avid researcher and pesterer of practitioners.  Scheduling and appointment coordinator.  Pharmacy liaison and delivery boy.  Director of dosages/drugs.  Treatment coach and insertion specialist.  Creator of strange comforts and distraction techniques.  Evaluator. Bitch. Warrior. Doormat. Constant. Trusted servant. Sucker.  Washer of endless dishes and laundry.  Emotional conduit. Peacekeeper. Keeper. Sugar cop. Negativity deflector. Guardian. Shepherd.

I expect there will be a great deal more to add along the way.

So, on the day I decided to blog about my experience caring for Terry I had been in the line of fire for many consecutive days, then weeks. Hell yes, he is pissed off as well as sick and weakened and scared. He understandably turned all of those feelings into a laser-accurate stream of hate and anger.  Being the closest (and easiest) target, he took aim and made me its recipient.  Foolishly, I attempted to absorb the vitriol for much longer than I should've.

And then, we had a moment...

At my breaking point, I scheduled a meeting with a counselor. Terry had an epiphany, really.  It was a long time coming, and afterward, we just melted into each other.  We fused together like RSO and cocoa butter.  (For those of you who aren't familiar with the world of medical cannabis, RSO is Rick Simpson Oil.  I will elaborate in future posts, I'm sure.) This moment brought me to this post and a new need to record my thoughts going forward.



Most of us are familiar with Elizabeth Kubler-Ross and her five stages of grief model.  I have chosen to write under the following headings, as every day seems to feature one of these themes:

1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance



Curse of the caregiver will continue to be the name of this collection of posts for reasons that are my own.  It should be known that I do not consider it a curse, rather it should be seen as a mixed blessing.  I am so grateful for this time to draw closer, to be needed, to rise to the occasion and to champion the cause that is Terry Williams' life.

May it be a cathartic, meaningful journey that brings us ever closer.  I want to feel every single exquisite emotion deeply.  Whatever is to come, I am fully present, and I don't want to miss one single minute.