BMT Day +198 Asleep

Asleep

Today, Teri is mostly asleep, but arousable.  She asks to sit up and does so briefly with Rachel and I supporting her.  We have to change her in bed.  Unfortunately, she is passing a lot of blood.  She does not respond to our queries about whether she is having pain.  The hospice nurse and aide ask us to respond to nonverbal clues and to administer pain medicine whenever she grimaces or moans.  We increase the doses of narcotics.  We are learning the ropes in this new world.

Teri’s bright spots today were:  1) a brief smile when Jack climbed into our bed,  2) one smile of recognition to me,  and  3) recognition and hug for Dr. H. who came to see her. 

Teri had asked me to call Dr. H. to see if he would come so that she could say goodbye.  He originally planned to come several nights ago, but I had just put her to sleep early as she requested.  In hindsight, it would have been better for him to come then, since she could still carry on a conversation.

Dr. H. assessed her briefly and confirmed that she was severely uremic (accumulation of urea nitrogen from lack of renal excretion) that lead to a acidosis (too much acid) and Kussmaul (periodic) breathing.  Given the continuation of bleeding from the GI tract (probably uremic gastritis), her hemoglobin (red cells count) was probably in the range of 5-6 (40% of normal). 

I show Dr. H. the photographic collage of her pre-leukemia life, her youth, her family, her friends, her adventures, her travels.  I tell him about the living wake that he couldn’t make and what others said about Teri.  He tells me he saw those qualities in her.  I tell him that one of the few upsides of her cancer was acquiring a new BMT family, as much as she hated being in the hospital.  He said that family feeling was reciprocated and that everywhere staff ask him about Teri’s final progress.

We rehashed the course of her illness.  Teri was cured of cancer!  She kicked butt, successfully!  But, she couldn’t tolerate the mismatched transplant with a marginal number of stem cells that led to a marginal numbers of lymphocytes (also insufficiently armed and targeted) to fight off the viruses.  She developed innumerable complications, as Dr. H. acknowledged and Teri herself realized, and simply couldn’t get over the hump and regain her energy, semblance of her former physical self, and her moxie.  He reiterated, “She had one of the toughest cases I’ve ever encountered.”

Rachel, John and baby Jack

It has been great to have all three here.  Jack has added to the cycle of life.  He has provided his effervescent smile and boundless energy to the laden emotional proceedings.  He has bonded with his great grand pa over a 90 year age span.  Rachel has contributed her super organizational skills and judgment to meals, to who visits, to what is appropriate.  Today she was vacuuming with Jack in the front pack while organizing the kitchen and doing laundry.  She has taken the opportunity to communicate the important things to Teri that kids either don’t have a chance or don’t choose to.  John has been a rock amidst the turmoil providing low key support and balance to the household.

                                                                          

Donna brought freshly made sorbet, Elena brought pizza and Sandy sat with Teri while we ate.  

My father stood and addressed Teri but didn't get a response.

Hospice

Choosing hospice wasn’t a facile choice but one which Teri made thoughtfully and courageously.  As I watch to reality of which she is now experiencing, it is not an easy or as quick a course to traverse as one might imagine.  As Rachel and I try to provide support for mobility, bodily function, pain management and especially, watching the rapid loss of functional capacity and of the spouse and mother that we knew ... it is not easy for us either.  But we must support Teri in her decision, as hard as that is, and relieve her discomfort in her final days. 

Somehow, I find solace in sharing this vigil.