It’s been some time since I’ve posted a blog, in fact about two weeks ago. I started to write an entry about 8 or 9 days ago, which was to be called something like ‘and on it goes and on it goes’. I didn’t finish it, and now I’ve trashed it because we’ve had really bad news.
In my last entry, Peter was still in the SNF, but that ended quickly. On Monday, 25 February, we had a regular appointment with Dan George (oncologist). All was going as it usually does until Peter said he had loss of temperature sensation from about his waist down. Dan’s face dropped – I’ve never seen a medical person look that way. He said clearly there was neurological involvement other than the leg weakness, so Peter must be admitted to the hospital immediately. This time however, we didn’t have to go to the ER, and pretty soon Peter was back in 9300, the oncology ward at Duke. Nina was dispatched to the SNF to get Peter’s things, Jason helped marshal Peter to the floor, I moved the car, etc.
Many visits from various attendings, kidney specialists, oncologists, spine guys happened. Peter had kidney failure once again, but massive IVs arrested that. The best person we saw was an attending, Dr. G. (Tony Galanos), who specializes in palliative care. (For those who don’t know the term, palliative care means comfort, as there is no cure for the cancer, or whatever disease it is). Dr. G. was superb, as were all the nurses and others on 9300.
But then Thursday morning happened: Dan George came by and said that medically there was nothing further that could be done, as Peter’s body is too weak to withstand any more chemo or other attempts to delay and/or arrest the cancer. That’s the news no one wants to hear, but now we’ve heard it. It was a very emotional few hours, and that continues. I called Nina and said she must find a new apartment for us that very day, and she did. Movers were organized, Dr. G. delayed Peter’s discharge from the hospital until Friday, as he still had a fluids IV stuck in him. We spent Friday night at the Washington Duke Inn as the movers couldn’t be organized until Saturday.
We cried, we talked, we planned.
We decided to opt for in home hospice care for Peter. That means that we’re officially enrolled in the Duke Hospice Service, and assigned a medical team, a nurse, a social worker, a nurse assistant, volunteers, and a chaplain. The first few are requirements, but the volunteers and the chaplain are, well, voluntary.
Peter can opt out of hospice should we choose to do this. If he gains strength enough to return to ‘curative’ then he’ll opt out. Some days I think this is possible, other days I’m not at all sure he’ll regain strength.
So that’s the truly bad news. (For everyone I’ve not been in touch with, my apologies, but I’m sure you’ll understand).
We’re in the new apartment, which is in the warehouse district in downtown Durham. It’s a lovely bright space full of exposed brick, very high ceilings, industrial fittings, etc., as befits a converted tobacco warehouse. We’ve seen the nurse, Beth, who is wonderful, social worker arrives tomorrow. Peter’s main issue is his stomach, but Beth is helping sort that out. But extreme fatigue continues, and now Peter is pretty much wheelchair bound, as his legs are so weak, but we’re adapting. He has a walker for when he gains more strength in his legs.
Peter’s medical team consists of Dan George and Dr. G. (see above). Dr. G. is a warm, caring, and extraordinarily sympathetic guy. Remember my saying only young docs are any good? Well, I think that’s true for all specialties except palliative care. Dr. G. is probably mid-fifties or so, and helped us so much that last day in the hospital and over the weekend as well. He wrote out a number of prescriptions, the last of which said Peter – Be Selfish. And that’s what needs to happen.
More in a day or so. Kristina arrives tonight, Jason and Nina have been wonderful, Sarah and Dennis are showing up next week.