Unfortunately a return to the hospital (Room 4NT14 and a side effect

4/23/11

BMT Day +67

Teri was at home from April 4^th to the 19^th.  Her energy level (long 2-3 hour daytime naps), appetite (bites, half bowl of soup and protein shakes) and strength (mostly with the walker) were improving slowly although not near her pretransplant level.

Since last week’s blog on 4/16, Teri had been spending 8-11 hours every other day in the Day Hospital (infusion area in the outpatient Cancer Center) receiving IV platelets, red blood cells, immunoglobin and cedofovir.  Unfortunately, the platelets were only lasting a 1½ days falling from 45K (normal 150K-300K) to 7K.  This lead to increased numbers of passed clots that would trigger more the dreaded bladder spasms!!  Dr. H. recommended readmission to gain control of her bleeding by daily platelet and blood transfusions.  Teri had refused earlier given the spectre of her last two 80 and 54 day stays in isolation.  He assured her this would be a shorter one.  She cried.

No admitted, over a 24 hour period, Teri became acutely confused (couldn’t operate her phone or call button and misrecognized Grace for her sister), with a dramatic loss of energy and affect (even skyping with Jack did not perk her up).  Her medical parameters remained stable or close to normal.  Grace and I helped walk her to the bathroom, prepared comfort food, spoon fed her, and tried to orient her.  We did not understand what was happening.  The whole attending team came in and finally hypothesized that she was probably having a specific reaction to Probenecid (used to increase her cedofovir levels).  We waited a night and, thankfully, she gradually became clearer.  We were not surprised when they also suspected emerging depression that had only arose after a year of harrowing hospitalizations.  Several of the team commented that many experience this earlier and Teri’s belatedness development was likely due to her inner strength and positivity.  She is being started on treatment that may take several weeks to become effective.

Her niece Phyllis (IA), Becky (NJ) and niece Grace (CA) all came for extended periods over the last two weeks and provided incredible support, food, treatment administered with patience, gentleness, and loving care.

At this point, Teri is still very weak and sleeps a lot.  She is unable to speak on the phone or respond to e-mail for now.  We read her your cards.  She always appreciates your telepathic thoughts, promising prayers, and relayed Reike.  Please continue to send them during this critical period.  Her oncologist remains optimistic about Teri’s long-term outlook but poor Teri cannot see beyond each of these 6 foot high speed ‘bumps’ to see the beacon at the end of the tunnel.  As Susan writes, that light is definitely –not an oncoming train!