BMT Day +188 A final decision

The decision

“It’s been too long … I’m in too much pain … it’s not the life I envisioned … every next step they recommend comes with a complication or side effect … I have no life.”

 “I just want it to end.  I want to stop therapy now.”

After our call to him, Dr. H. came over to our home on Sunday morning and listened.  He said stopping all treatment was very understandable in light of Teri’s course, but was not one he would make for himself.  He said it would likely require 3-4 more months before the lymphocytes became functional, and she regained some modicum of normalcy.  But there are no absolute guarantees.  He said that the neph tubes could come out soon;  she was happy about that.  He and I recommended an NJ (nasojejunal) tube again to help her regain weight and build protein to draw down the fluid in her abdomen and legs.  She agreed, momentarily, with this new plan while Dr. H. cancelled Sunday’s planned IV needle change at the Day Hospital.

Later, she sobbed to me, “You don’t listen to what I’m saying.  I have no control anymore over my body.  You‘re acting like a doctor.  It’s my decision.”  That’s my husband-doctor dilemma.

Over 24 hours she careens back and forth thinking that she will take on the feeding tube and then giving up the idea.  She wags me like a tail, one moment thinking of a future together, another, looking at now, coming to a full stop.

Readmission

Another complication.  Later Sunday evening she developed severe, “dagger-like” pain in the stomach area after developing melena (dark black stools containing bllood) early in the day.  I gave her a dilaudid (narcotic) to calm down the pain, doubled her acid suppression, and arranged for her to be readmitted to the BMT ward.  Indeed as a result of the bleeding, she was very low in red cells (Hgb 6 normal 12-15) and platelets (6K, normal 150-350K) and received 2 units each of red cells and platelets.  She received fentanyl, another narcotic.  To me in GI, this sounded like a bleeding duodenal ulcer, or, stress or uremic gastritis.

On attending rounds this morning, Dr. R. kneeled by her bedside, she said “I’m tossed at times.”  “I don’t want to die, yet I can’t tolerate it anymore going forward.  I’m not afraid to die.  I’ve come to my decision.”

Dr. R. to Teri: “I’m here to listen to you, to facilitate your goals (not B’s goals for you).” 

Dr. R. to me: “What is the medical course between where you are and where you hope to be?”  Answer, 3-4 months of more of the same before improvement.  “What is the cost to get from here to hope?”  Answer, the same level of suffering.  “Is the price to high for Teri?”  “It seems too high for her, now.”

Dr. R. reminds us that the museum tickets Teri and I gave him for the China exhibit enthralled his 11 year old son.

Dr. R. tells Teri he applauds her unparalleled courage and endurance.  “And, it takes a lot of courage to come to the point where you are!”

Dr. R. tells me that accepting Teri’s decision as right for her is the most difficult thing I will ever have to do.  I sob.

Dr. R. tells me that telling Teri that I will carry on successfully with her memories will be my parting gift to her.

Family matters

Teri spends time looking at Ben’s pictorial calendars that he makes every year for the family out of pictures taken in Ecuador, Galapagos, California …

Teri spends time looking at pictures of Jack, Rachel and John.  Jack is almost 10 months, now.

As we hold on to each other, I tell her Teri has been the heart and soul of our family.

She tells me I have shown her humor, music and travels to places that she never anticipated visiting.

I tell her I’ve learned more about her during this past 1½ years through her reflection in the eyes of others:  how she connects on a deep and responsive level, and the gargantuan well spring that is her heart.

She touches me tenderly and tells me over and over.

At dinner, she held hands with Dad and I in silence for 15 minutes, and told Dad he loved him.  “I thank you for all the beauty you have brought into B and my lives with the paintings.”  Dad reminded her of how well she took care of him since my mother died.  Teri:  “You and B must be there together for each other.” 

Finite time

We have limited time. 

Teri asks me to limit visitors to:  immediate family, her siblings, our close friends from Madison, and the Gourmet Club from Columbus.

I ask once again for your prayers and thoughts this time to help make her farewell and transition as peaceful as possible.