BMT Day +190 Saying goodbye

We have traversed a universe of life’s possibilities in a mere 48 hours, from a new normal (dialysis) to end of life. 

I know from thoughts shared with others about how tired she was and that she has been thinking of the stopping the fight for some time.  She told them that given her constant suffering, that the only reason she was continuing was for me.  I should have ‘let’ her discuss her concerns with me, but I wasn’t ready and she knew how difficult it would have been. 
 
From a full go to full stop.  In hours.

In the hospital

Teri had a better day yesterday Tuesday being titrated on a fentanyl patch in which a narcotic is gradually released through the skin over 72 hours.  She still had paroxysms of upper abdomen pain as she did on Sunday that brought her to the hospital for needed analgesia.  But less severe.  She called me in the morning at home.  That’s always a sign she is feeling better, with it.  She can smile.

We meet with palliative care to develop a plan for pain relief and recommend the fentanyl patch for a basal pain control with oxycodone in a concentrated liquid form for spikes in her pain.  She is listed as nominally ‘allergic’ to oxycodone to which she developed severe nausea.  However, we learn that in patients naïve to narcotics as she was in the beginning, that reaction is much more common than in those who have received a lot of narcotics.  That explains a lot.  So we try the oral drops.  And it works on her stabbing pain.

We meet with hospice care which provides nursing, aide, wheel chair, commode, hospital bed if needed, plus social work, therapist, bereavement counseling …  We arrange for the nursing and debate whether she will need an ambulance to come home.

Teri is alert but weak, but does not want to get out of bed.

She is calm and at peace.

Saying goodbyes

We share mundane memories about the kids, travel, and our early years. 

She reminisces with Dr. H., “I put up a good fight didn’t I?”  “Yes, an incredible fight, you suffered through the most complications of anyone I’ve taken care of.”

She says to him, “I have no regrets, except for leaving B.”

He says, “Your husband has the patience of a saint – this comes from the entire medical team, doctors and physician’s assistants.”

She says, “I know.”

She asks, “Will I see you again?”

Dr. H., “I’m not through with you yet.  I’ll stop by your home this week.”

She asks me to ask the Life Clinic (BMT) receptionists (Josie, Patty) and several (Alyssa, Charlotte) on the Laboratory blood draw team that she saw 2-3 times a week to come up to say goodbye.

They come up individually, hold her hand, share tears, hug.

“I always looked for your name on the lab patient list and looked forward to your coming.”   

Teri, "You are the only one who looked after my skin as it was breaking down around my PICC line, you gave me special care.”

“You have given so much and you have handled it so graciously.  I love you.”

“I will carry part of you with me in my heart.”

Ruth the harpist who played for her:  “You have touched so many of our lives with your strong spirit."

Mary (spouse of Steve), daughter Becca, new husband Josh and Kat come from Madison and bring Vietnamese noodles.  Tears, holding on to Teri and me for an eternity.

Lois, a college classmate, arrives from NY to help care for Teri.  She decides to stay the night at the hospital with Teri.

Recalled conversation

On Saturday when she broke down after her dialysis and said she couldn’t go on, we sat in the car in the garage alternatively sobbing and arguing.

“You want me around for your self, but you don’t listen to my needs, my wishes.”

“It’s true.  Since Dr. H. said your cancer was likely cured two months ago, I have began to dare to dream about our future together.  Now, I can’t envision the future without you.”

“I’m no longer the person you fell in love with, the person you married.  I’m no longer myself.”

“I’ve resolved in my mind that even if you are disabled, wheelchair bound, we will continue a life together, even travel.”

“That’s no life for me.”

Empty house

I notice that on one of her innumerable notes left around the house, she has fastidiously recorded her nephrostomy output in the hope of getting the tubes taken out once and for all.  The dates are marked from 8/15 to 8/21.  The last entry marks the day she decided not to go forward.  She was so close to the threshold, just 25 cc’s, less than one ounce over the limit for removal.  Indeed, she was so close to conquering this.

I recognize the solitude in the house again, as I have for the 190 or so days of hospitalization.  This time, in my state of heightened awareness, I notice that is not simply the absence of sound but instead it is fully pregnant and bursting with her life and her presence.  It expressed everywhere I look as I walk through the darkened house, the colors, the furniture, the tchochkes, the pictures ... the notes.

Teri’s desk is totally clean of bills.  A prescient sign of her preparedness.

After she comes home today, the house will be brimming with kids, son-in-law, grandkid, her siblings from California and friends.

For communication, please send e-mails or comments - either I or the kids will read them to Teri.