Blanket Notes Part 4: So Long Lewis Carroll

After many days (weeks, months, years???) in the rabbit hole, Alice, much the worse for wear, emerges.

Today, Saturday, April 24. Barbara Daley Bigelow, date of birth 10/19/1957 (the medical requirement for each intervention), enjoys her second full day out of the hole.

Yesterday, was a day of atonement, and the previous day was the transition.

When last we spoke, Barb was still deep in the s*&t. Intubated, comatose and lost. Yes, she did wake up (and celebrations did follow), but still remained in a state of, to put it as mildly as we can, psychotic fog. There was exaltation, but was tempered by the fact that she was quite cranky and, at best, was channeling her long lost father (who could crank up with the best of them). She kept asking for us to find the “wizard breaker” and referred to her oncologist (and me!!!) as “figments.” She would stare off in the distance with a quizzical look, eyebrows knitted, as if trying to grasp it all. There was a spooky quality that, although humorous on a weird level, was quite disconcerting.

All this from what we have now come to realize was a reaction to the Pembrolizumab, the trial immunotherapy drug she was taking. Maybe it was the infected port that started it, but whatever it was, a hyperinflamatory syndrome essentially attacked every organ in her body.

But we still were so happy to have her back and speaking. We listened to her tell us we were lying to her … (about, I don’t know…what???). She was completely forthright and direct, but seemed from a different world of some sort. We laughed at her quirkiness, but were still unsettled.

Thursday she had her second round of the new, regular dialysis. I was there and, for the first time, actually wondered if I was losing her (not dying, just losing). She looked at me like never before, distrusting, uncertain, and very, very far away. Then she went to have a new tunnel catheter put in so she could continue dialysis (a replacement for the femoral catheter in her thigh). When I went down to see her it was all brand new. Barb was back! She looked at me with quizzical, but knowing eyes and said, remorsefully, “I thought you were all lying to me.” “I didn’t believe anyone, I didn’t know what was going on.” Distrust was replaced by a new kind of openness, an understanding that she had doubted when doubt did not exist. “I’m sorry I said you lied to me,” she said. “I was psychotic and thought everyone was lying.” She then went on to recount her visions of being in a delirium dream, banging her head on an electric grate, hoping to shock herself back to reality. The “wizard breaker,” she told us, was anyone who could break the spell she was under (oh, my little sweetheart, it is heartbreaking to hear this).

So yesterday, Barb’s “apology tour” immediately ensued, as she said how sorry she was to everyone she thought she had wronged (in, what, like a 36 hour period???). Nurses, doctors, me, Kelsey, Dr. Rachel, and numerous others, were singled out for her supposed transgressions.

And today, she continued with her recollections of the seven levels of hell she was in during her unconscious state and her psychotic interlude. As a psychologist, she has a special ability to recognize just how out of it she was. Nurse Kelsey, with appropriate clinical acumen, said it was probably due, in part, to the fact that the dialysis (which, by the way, she absolutely hates) had cleaned out many of the blood toxins that were contributing to her delirium.

We got her to sit up, we found the right kind of thick drinks she can have (because the “spit and swallow” people still say she can’t have real liquids), changed her into new pajamas (so long johnnies), and bought her a ton of smoothies that she sucked down like a Hoover. She’s smiling and laughing. She’s bossing me around (okay, so not everything is great!). One of her doctors (Jesus, I think she has had, like, 40 of them so far) said he thought he could get her to a rehab facility this week. And by the way, she is probably the most famous, not-named person in the Brigham, because the medical staff have had numerous conferences about her special case and her unfathomable resurgence.

Staff from the ICU have come to visit and have commented on how great he looks and how remarkable it is she has come so far. Today was the first day I was actually giddy about going in to visit. I realized I haven’t been this happy in, I don’t know, maybe 33 years???It’s still early, but I think I have my sweetheart back!

The only appropriate song is from Boston’s own, straight from their old apartment on Commonwealth Ave: