By the numbers, the kids and I

Teri hospital, hospital-free, and good days.

Pardon my numbers.

Teri’s illness from diagnosis to death lasted 570 days or nearly 19 months.  She was hospitalized for 253 (8½ months) and treated at the Day Hospital, BMT Clinic, lab or in Hospice Care for 111 days (nearly 4 months).  That is, on average she rested at home only 1 out of 3 full days.  I estimate that she only had 54 ‘good days’ not in the hospital or Day Hospital, relatively pain free, feeling and acting like her usual self.  Of the 199 days following transplant, I believe she only had 3 good days.

Teri talked consistently about her poor quality of life post-transplant.  But it is also apparent that she had poor quantity of life as well.

Rachel

Rachel spent a lot of time with talking with her Mom, talking, aiding and massaging her and becoming even closer.  She felt it very important that she be here during Mom’s final days. When queried, Teri reassured Rachel that she already is a great mom.  Rachel provided solace to me in Teri’s final hours. 

Rachel follows in Teri organized foot steps.  While she was here, she juggled Jack (still breast feeds some), shopped and prepared our family meals, cleaned and organized Mom’s belongings, demedicalized our home, meanwhile kept on her training schedule for an upcoming half marathon. 

For those unfamiliar with her aerobic exploits, she has completed 4 Ironwoman triathlons (2.4 mile swim, 112 mile bike and 26.2 mile run), dropping an hour off her personal best last time.  So this half marathon is a jog in the park.

Ben

Although Ben did not return in time to see his Mom one last time, he had a chance to say goodbye the previous weekend when Teri was still coherent.  Perhaps that was better.

Interestingly, he has absorbed more of his Mom’s life philosophy than Rachel or I.  He says it is in part due to how much time they spent together working through his childhood issues with alopecia totalis.  When we talk, he asks, what would Mom advise?  He talks to me specifically about ‘letting go’.  He asks me, ‘what do you want to do next?’  Given my single minded focus on Teri for 19 months and infrequent feeling about a positive outcome, I draw a blank.  However, it is warm feeling to be counseled and challenged by a mature progeny. 

He studied very intensely throughout the weekend.  He asked me to quiz him on the chemical structures of the 20 amino acids.  He does well.  He says he already feels behind … it is week one.  I say that is a permanent state of feeling in school but one that he will bear well.

B

I am trying to grieve and deal with the practical aftermath.  Today I saw the psychologist that both Teri and I started with when she first became ill.  I an relieved that the guilty feelings of relief and a taste of freedom after 19 months (taking a walk with Ben) are normal.  She says that level of stress was so intense that I became numb in order to cope with the many vicissitudes.  I acknowledge it.  So many nights of not knowing whether she would survive.  So many months of unrelenting cascade or complications like crashing waves with short-lived lulls in the troughs.  Living on the edge.  So I do feel some relief.

I deliver about $6,000 of unused medications to the pharmacy for destruction (especially posaconazole).  Once medications have left the pharmacy, by law it can no longer can be used, even if sealed and unopened.  Some police departments will also accept and destroy unused medications, especially narcotics which the pharmacies cannot accept.

I pass by some of Teri’s favorite people in the Cancer Center the lobby receptionist, BMT Clinic receptionist, and the lab technician who took extra special care of Teri’s PICC line and skin around it.  We both tear up and give a hug.  One asks for a picture taken of her together with Teri.

I was driving watching the clouds in a sea of blue, something Teri would do, and I began to sob spontaneously.