I have now been moved to hospice, but this may or may not change quite soon.
Alicia was in Hospice too, and being here only reminds me more strongly of our time time together there. In my memory, her time there was broken roughly into 2 one-week chunks (other probably have better memories than I).
Her first time was a short period in the ICU, a time of very limited visits, restricted access and a lot of unknowns. I flew out somewhere in the midst of all that, and I remember sitting in the hallway, trying to find an acceptable place to wait with a few other dear friends of hers. We came to call ourselves “The Lionesses,” a band of fiercely devoted women from all over the world, dedicated only to making sure that Alicia’s thoughts and wishes were carried out as she would have wanted them to be.
After ICU came Hospice, a floor in her hospital. This was much more comfortable for her and for us, as she was able to have a full, large room to her own use, and we were able to somewhat commandeer a large meeting room as a “headquarters” for all those friends and family who were there to support.
The first week was full of joyful friendship: singing and laughing, telling stories in between rests. Alicia was very lucid and much of this time was spent getting affairs in order.
The second week was much more contemplative, and the feeling in the “control center” was more that of holding a vigil. Sleep was caught in snatches, often on the floor of the meeting room. Sometimes we would go to the apartment of a nearby friend, walking to and from the hospital room in even more of a pilgrimage to Alicia’s side.
At this point, we are solidly in the feel of the first week. I’m meeting friends, making plans for my memorial, and even feeling stronger and stronger. It’s very easy to feel like this might be another phase in my long, spiraling journey towards passage, but that this might not “be it.” I have many reasons to feel very hopeful, but we are still waiting on some concrete evidence to let me start the next treatment (Keytruda, at which point, I would be kicked out of Hospice and would go home to recuperate and start treatment.)
So while I’m still making plans which will be used at some point, please start gearing up your prayer guns and good vibe rays, because we might need them stat!