Our friend, ally and tenacious advocate Kyla got us an in-clinic appointment with Kaiser Oncology’s new (as of September) Palliative Care team. The doctor and nurse (the social worker was away) were compassionate, direct, and wonderfully useful in offering suggestions to help with Val’s pain, nausea, and difficulties breathing and eating. I wanted to punch Kaiser in the nose for thwarting our repeated efforts to connect with Palliative Care before, because it is clear to me that every oncology patient from the beginning of their treatment needs exactly this kind of sensible, informed, comfort-care support. We came home with new meds, encouragement to discard some of the old ones, suggestions about how better to do some things we already do, and the feeling that someone was willing to spend time and effort to care for Val’s whole being. Holy cow. Too bad we leave Kaiser in three days. However, they not only got us the phone number for OHSU Palliative Care (we had it already, but it’s the thought that counts) but promised that even after we leave Kaiser we could call them for help any time we needed! (I almost didn’t type that, for fear the Kaiser borg would find us out and come stomp us into bureaucratic compliance.)
Also: Val continues to breathe a little easier every day this week. Last week she couldn’t walk up the stairs without having to sit and recover, winded and panting shallowly. Today she went for a walk around the neighborhood. Holy cow.
Love,
Deborah
A walk around the neighborhood. Holy cow indeed!
Oh that is such excellent news all-around. I’m so glad you’re getting some good care. Love love love.
love good news, keep it comin’
Sometimes when I’m frustrated with a situation, I wonder if I’m missing some key that would make the frustrating situation much easier to deal with. And then I get madder thinking about it. Much like your Kaiser Palliative Care. This is why I think that people who know how to work systems are the coolest people on earth. I hope OHSU will be better to you.