There are prophets. I have lead by a not challenge. And sorry trying to write but cannot. P is a lot…challenging. He is 8.
Today Cindy and family bring our kids. This was a good work or Steve and M. were wonderful.
The kids are fighting as I write. I could see that is bad, but…it’s still love.
I should trite about the list of people who do such. But was tired.
That said, there are somethings about. A. was full of warning. But there was a bit of things that made me.
1) I am talking. Still talk. I am string with word. I must less, but I can speak that writing.
2) Slow the right side is getting 6-8 weeks is sign.
3) I can walk. Not much, but I can. On a good, I can
4) No of has that Dr. A live, his peatent, have lifed. We are the other patient, are not mind. Do not, there other have a horrible life. But Glioblastoma multiform.
With one year…one.
Please, I am very tired. But I am alive.
For the 3rd week in a row, Erin has gone to Davis. Cindy picked her up about 6:15 this evening, and will bring Erin back Monday morning about 9 am. Erin took off with 2 wheelchairs and 2 bags of Trader Joe’s groceries, which she had purchased this morning with Shannon.
This morning Shannon came and took Erin to run errands and have lunch. Erin came home exhuasted, and too tired to talk to Barbara, the volunteer, who was on the phone. Barbara was home from her 4 week bicycle tour of France. Barbara had heard that Erin had gone off of hospice. But, Barbara considers herself a friend and neighbor, so she is planning to stop buy and take Erin around the block next week.
Barbara uttered the same words as Dr. Adams: enjoy each day and don’t plan too far ahead.
Erin saw Dr. Adams, her oncologist, this afternoon for the first time since July 31st. He had been out for 4 weeks with an injured knee and is still in a boot type cast and has to keep his leg elevated. So, we met in his office rather than an exam room.
He thought Erin looked the same, but said that he cannot predict what will happen. Uncertainty is difficult to deal with and we just have to deal with it day by day. He warned not to make long term plans.
She can get a flu shot, but people with a cold or flu should not visit her. She had lost 5 pounds in the 8 weeks since she had seen him.
Steve arrived for the last 5 minutes of the appt. (Dr. Adams always runs about 20 minutes early.) Steve asked about an MRI. Dr. Adams didn’t recommend having one. At this stage, it doesn’t tell you anything. He said he visits Erin for social purposes. She is post-modern medicine. Chemotherapy failed, and now she is “post-scientific”, or as they say in med school, “post-modern”. It is back to old-fashioned pre-chemo day medicine.
He warned: “Dont’ let a day go by that you don’t make the most of.”
Cindy brought Erin back to Sacramento this morning. Then Erin got caught up on sleep. We actually left her alone this afternoon for a couple of hours while we went to a Memorial service for a colleague. She managed fine.
There are at lost. I was supposed to dead. It was like be. When SF and tested for then. That OK. I notice on phones, a hello, with a quiet straght.
Steve’s fried expleaned it. I cannot what he said but he said to “You we dying. Now you are lives. If we are still at the death.”
Steve here. What Erin is trying to say is that my friend was in town last night… I’ve known him since our sophomore year at Michigan. She was asking why the boys and everyone are acting strangely around here… there just seems to be a lot of tension.
I didn’t hear the conversation, but apparently he told her something to the effect of “everyone had sort of come to terms with the idea that you were dying and now they have to adjust to the fact that you are doing better. ” The mourning process has been going on for many of us for a long time and while we’re happy Erin is doing so well it is difficult to know whether to be optimistic at the risk of being overly so.
She is doing amazingly well. A few months ago it appeared clear that her disease was progressing but now she’s doing better than she has in 8 months.
Three months ago she could barely stay awake 4 hours per day. Now she’s barely even napping and some days, not at all. She couldn’t even move her right leg last winter and now she’s able to slowly walk around with the help of a cane or holding onto furniture. She could barely get out a few words… now she has long coherent conversations. She drove a car today for the first time in well over a year.
She still can’t seem to communicate in writing well and hunts for words but she called and ordered dinner delivery tonight on her own and has long conversations with friends and family.
This has been an emotional roller coaster for her family and especially Paco. Somehow my friend explained this to Erin succinctly in a way that really affected her… I wish I knew exactly what he said.
> Steve reporting:
> Erin has been wanting to drive again so we drive up to the empty parking lot at the local community college for some practice. >
> She has to shift and use the pedals with only her left arm and leg. At first her braking was a bit, um, sudden, but she quickly got smoother. >
> At one point she started to accelerate hard down a long aisle and I commented, “that’s the old Erin!” >