Steve was moved out of the Neuro Critical Care Unit today into a regular room. The removed all the IV lines, and he is free to eat and move around. He is however very, very tired. He did not get much sleep in the CCU (maybe 2 hours). Terry is allowed to stay in the room with him now that he is in a regular room, but it looks like he will go home tomorrow.
Dr Patil visited them this morning and said again that they got the entire tumor out. It is the best possible outcome they could have hoped for with his surgery. They will still do chemotherapy (2 months in a pill form, so he will take that at home) and radiation (as for as I know from the past discussions it will be 5 days a week for 6 weeks, possibly beginning 2-3 weeks post surgery). Cedars does have a radiologist that Steve can get his treatments from here in the Santa Clarita Valley, so he won't have to drive to West LA daily. Steve and Terry will talk to the neuro-oncolologist and the radio-oncologist at Ceaders either today or tomorrow so I will know more information soon. Exactly how they will do the radiation - we don't know yet.
As far as the vaccine program goes, the doctor wants to "put it in his back pocket" for now for two reasons: One, the removed the entire tumor, so there is very little if anything for the vaccine to destroy. And second, they are getting the best results when they use the vaccine on a recurrent tumor. So if a tumor regrows/returns or grows in a new place, they will build the vaccine at that time from the new tumor.
All this information is second hand to me from Terry, so I hope I got everything right.
Steve feels pretty good, except for the exhaustion. The "floaters" are already disappearing, and every other function seems to be working just fine. He will be really happy to get out of the hospital because they keep pressure cuffs on his legs while in bed to keep blood clots away, and he says they are uncomfortable.
I think that is it for today, Our brother Greg was with Steve and Terry most of the day, and Jessica and I visited briefly. Scott drove down tonight to bring both Steve and Terry some fresh clothes to come home in tomorrow, and because he wanted to visit with Steve. I believe that Greg is driving home to Northern California tomorrow.
Let me know if you have any questions!
Lesley
Hi, Les! Thanks for the update. I'm glad Steve is doing so well, floaters floating away... moving all body parts. I'm always curious about more though, so I do have questions....Did you notice any word-finding problems? Does he have a headache? much in the way of pain medications? What kind of bandage can you see? Just a square like after the biopsy, or a whole head-wrap, bandana-style? Did they have to halo him for this surgery so he has his forehead wounds visible or did they have a different way to stabilize his head?
ReplyDeleteWhen they did the surgery, what did they use to cut out the tumor? Just an old-fashioned scalpel or laser beams or radiation beams? Was there some reason not to do the glial wafer? We know the tumor is likely to re-grow so, will the chemo and radiation be enough? Did they save this tumor to make a vaccine with or, if I understood you, do they do a second surgery to remove a second tumor and make a vaccine from that tumor?
Inquiring minds want to know.... hahaha
Hi Lisa,
ReplyDeleteWow, lots of questions! I don't have answers for all of them but here goes:
I asked Steve about memory and word finding yesterday, and he was a bit slow at finding words yesterday, but I think he is just exhausted. He said that the Dr said that he may not recover some of the word finding issue but it should not get worse. No headaches internally, but the incision is a but painful. So far they are giving him 1000mg tylenol for the pain.
The evening after surgery he had a bandage wrapped all around his head, and you could only see a few stitches under his left ear. The bandgage was removed by the time I got there yesterday, and he has stitches from the bottom of his ear to the mid-back of his head. Looks a little painful because the scalp is still swollen.
I don't know if he had a halo, I didn't see the same wounds on the forehead, but it looked like a small wound on the right side near his ear also. Hard to tell sometimes if it was an actual wound of colored surgery stuff.
I don't know what Patil used for the surgery itself, I have only seen him once for about 5 minutes. There is a new controversy about the vaccine though.
Apparently (as I said in the blog) Dr Patil said to put the vaccine in the back pocket for now. However, when the onocologist came in he indicated that they should hit the tumor area hard with the chemo, radiation and also afterwards the vaccine - as long as the tumor had the right T-cells. He left the paperwork with Steve and Terry. From what I heard yesterday, Steve and Terry really respect Dr Patil and and leaning toward his recommendation. I think though that Steve is exhausted and was not absoring info yesterday. So I hope they will reconsider.
Personally, I want to see this thing get hit with everything they have in their arsenal, to delay any recurrence, especially because they come up with new treatments all the time. Fortunately, they have time to make a decision because Chemo and radiation will come first, after a few weeks to recover from the surgery, and the vaccine would not be given until after the other therapies are done.
As for the glial wafer, I understand that is now an outdated treatment. I think the possible side effects outweighed any benefit.
I only saw Steve and Terry briefly yesterday and did not get to meet the other doctors, so I am a bit out of the loop. I spoke to Greg this morning and they are Steve has seen one doctor and is waiting to be discharged. Apparently he REALLY wants to go home!
Thanks Sis! That helps me get a feel about how it's going. It sounds like speech therapy would be a good idea for Steve as they help teach word retrieval tricks and strategies. I hope they consider it when Steve recovers from this surgery itself.
ReplyDeleteIf Steve's lucky, he will soon be home. Please continue to let me know how he is.
We may not have internet after tomorrow morning for a week, so you won't have to bother with my barrage of questions for a while. I will still be thinking about you all, and we may get internet access at an internet cafe at some point of time. I can feel pretty comfortable that Steve will just be resting and recuperating next week.
I hope you and your's are all great. Jess is off to Pennsylvania soon? I'm afraid I have forgotten the timeline for her trip.
Take care and thanks!