How to communicate with Teri

10/16/10

Medical update

Later that same day – Teri gets primo (6 hour vs. 24+ hour) service because we are part of the MCW family – we found that she went in remission … with all of your prayers and positive wishes.  The next mountain in the Tour de Teri is whether her marrow will recover and produce new healthy blood cells – so far no.  In a garden analogy, the prickly sowthistle weeds (blasts) have crowded out all of the red roses, white gardenias, and lilies of the valleys (red cells, WBC’s, platelets).  Agent orange is used to wipe out both the weeds and flowers.  Usually the flowers eventually grow back, but if too much poison has been used, sometimes the flowers don’t recover.  If that continues, it could lead directly to the haploidentical (Ben) transplant or necessitate an autologous transplant first (from her saved stem cells) before receiving a haploidentical transplant.  Why are we back to Ben?  The Japanese donor turned out to be 6 of 10 match (poor) and be unavailable until February (far too late).  We know the timetable is short.  Teri has been learning about BMT – the good, bad & ugly – through a friend Kaila who has AML and is going through her BMT on the adjacent ward. 

Teri now feels different.  She views communication through a different prism.  One issue is the amount of energy it requires to talk.  The other issue is that talking often ‘requires’ (the pressure she puts on herself) to be upbeat, strong, positive – her usual persona – when in fact she is feeling crappy.  She feels that she is often trying to make you feel better or that you are cheering her up.  In fact, she has only had 10 great physical days since this all started when she was off all chemotherapy and antibiotics while we were in Vancouver in July.  She feels more than ever that she has to conserve her energy, focus on her needs, in order to get through each day, one by one.

Suggestions for communication
- What does she want from you?

- She prefers that you not ask how she is doing, since she is doing her best to climb peak after peak, standing on the precipice of constant uncertainty.

- She does want to hear from you in various forms of text messages, e-mails, cards more than through the phone.  She wants you to visit if you can.

- She wants to thank you for your continued love, prayers, thoughts and patience.