Sunday, March 27, 2011

I'm here at UCSF with dad and Kimmie and Candy and Becky of course. 

I spoke with Dr. Kemp who said that he and Dr. Martin don't think that the 60 day treatment is an option for him. The benefits don't justify the length and toxicity of the treatment and he would just end up in this place again but will have spent 2 months in the hospital when he could have been at home.

They do want to do a short term chemo treatment that will take 2 days and he'll be here for about a week to recuperate. They are hoping that the treatment will drop the amount of leukemia in his bone marrow and ease his pain. If it works, he can continue to do this treatment every 10 days. He also could possibly do this at Feather River. 

If the treatment doesn't work, they said he has several different options for Hospice. He can either be at home with family members taking care of him with a nurse coming in a couple of hours a day and on-call, or he could go into a facility that deals with hospice patients, or he could stay here at UCSF in a "Comfort Suite" where they would keep him comfortable until he passes. The home hospice is his obvious choice, but the problem with that is that he cannot have IV painkillers at home, only oral. Those have not seemed to help his level of pain, and he requires quite high doses of IV Dilaudid.

We'll have to wait to see how he fares this week before we pick up again on that conversation.

He is a bit more alert today but still says VERY random things, can't quite follow a conversation, and gets really confused. He is a lot more stable on his feet and can move around by himself quite well. He has a nurse who sits in his room or outside the door 24/7 since he is so confused and is still a fall risk.

Saturday, March 26, 2011

Dad has been transferred to the 14th floor today in a single room. The doctor came in today and gave him 3 options. I'll briefly explain them.

Option 1: Decline any further treatment, go home and call in Hospice.

Option 2: Do a short term, mild chemo treatment, then go home and eventually call in Hospice.

Option 3: Opt for a very intense, heavy duty chemo treatment that would keep him in the hospital for 2 months and knock as much of the leukemia out as they can. The possibility of remission is slim to none, and the treatment itself may kill him.

Becky said she would like to talk to him about it tomorrow when I'm there. I have called all my siblings to get their feelings about the options, and I'll let dad know if he asks. We will all support him no matter which option he chooses.

Check out the American Cancer Society's information on Hospice care:
http://www.cancer.org/Treatment/FindingandPayingforTreatment/ChoosingYourTreatmentTeam/HospiceCare/hospice-care-what-is-hospice-care  (click Next Topic to continue to the next page)

He has increased his dilaudid to 2 mg. every hour to deal with the pain. Becky spoke with someone (nurse/nurse practioner? I forget) who said that his mental state could possibly be due to the leukemia entering his spinal fluid and brain or it could be due to some of the medications. She did say he is a bit more alert today. 

He received more blood and more platelets today. He seems to be burning through both at rapid speeds.

Friday, March 25, 2011

Called UCSF today to see how dad was doing and talked to his less than helpful nurse, Susan. She said he needed blood and potassium but that his platelets were fine. I asked her how his mental status was, and she said his short term memory is still shot and he can't remember much at all. She said he was steady on his feet, so that is a bit better.

The doctors should be in today sometime, hopefully sooner rather than later. I'll find out from Becky what they think and if they have a plan or even an idea of what's happening.

Candy and her 3 oldest will be stopping by to see him today. I will be heading down on Sunday.

UPDATE:
Becky talked to the nurse practitioner who said that dad's blood is showing 59% leukemic cells. They are going to give him some softer chemo drugs to try to knock the numbers down a bit so he'll be in the hospital for a little while longer until he recuperates from that. After that, it looks like he wants to go home and have hospice come in to monitor his pain and treatment. He is also talking about getting a DNR (Do Not Resuscitate) in place.


They are trying to get him up to the 11th floor where they can better manage his pain and treatment.

Thursday, March 24, 2011

Cat scan results at the ER showed no problems, his blood counts were low, but not low enough for any transfusions. He's home now, but Craig talked to Dr. Martin's nurse and got his admit day moved up to today at UCSF. He still won't go today since they probably won't have a bed until Sunday.

Craig has been monitoring his dilaudid intake, which dad is not happy about, but they think he was getting too much since every time he wakes up, that's what he asks for. We're hoping that by giving him a smaller amount on a more regular basis, he'll do better.

He's fairly stable on his feet, and his verbal skills are a bit better, but it's obvious that something is wrong. He'll get blood work done again tomorrow morning, and I'm sure he'll need blood and platelets.

UPDATE:
UCSF called and they have a bed available today. Craig and Doug will be driving dad down this afternoon. Becky will head down this evening after she gets home and packs some stuff for the hospital. I'll be heading up to his house to say goodbye before he leaves today. I'll also try to get down to UCSF this weekend. Hopefully I'll get an update from Craig and Doug this evening as to why he's deteriorating so rapidly.

UPDATE:
Dad and the boys left for UCSF today at 4:30. He probably won't even get to his room until 10 p.m. or later. I saw him for a couple of hours today and he's not doing well. He's very weak, needs help to walk and get dressed, forgets what he's doing, and doesn't make much sense when you talk to him. He'll have a moment of clarity, and start saying or walking somewhere, then forget what he was doing. 


When we got him ready to go, we started heading towards the front door, and he turned to go back down the hall toward the bedrooms. We asked him what he was doing, and we needed to leave, and he paused, and softly said, "One more time." He then headed into the master bedroom, looked around, and then must have forgot why he was there, cause he started to take off his jacket and shoes. We had to remind him again where he was going and he just hung his head down, and said, "oh".


We got him out to the car and he looked at me and asked me where I was going, and I told him I was going home and the boys were taking him to UCSF. He gave me a hug and a kiss and told me he loved me, then got in the car to leave. I think he knew that might be the last time I see him. He just doesn't have enough energy or the attention span to say more.


The dad I saw today is not my dad. MY dad can put on his own jacket and shoes. MY dad can walk to the bathroom by himself. MY dad could eat more than 2 bites of food at a time. MY dad could always finish a sentence AND a long, drawn out story. MY dad was the strongest man I knew. MY dad would have told me how sad he would be to leave us all behind and he would tell us all how much he loves us. The guy I saw today was not MY dad. MY dad is gone. And I miss him so much already.

Wednesday, March 23, 2011

Dad got his bloodwork today and needed more platelets again. After his transfusion, he went home and took a very long, very hard 3 hour nap. When he woke up, he was apparently not all that steady on his feet and his mental and verbal skills had taken a dive. Becky had gone to work since Craig and Doug were home to take care of him, and she did not like what she saw, so they took him to the ER to get checked out.

He's at the ER now and the doctors are ordering blood tests and a cat scan to see what's going on. Craig will text me as any new information comes in. I'll update the blog in the morning with any news.

I'm thinking we'll be needing to take him back to UCSF sooner rather than later as his condition is worsening. Strange, since they took him off of the Ativan and he hadn't had any dilaudid since this morning. There was no good reason for him to be so unsteady and confused.

Tuesday, March 22, 2011

Dad is a bit more stable on his feet today, but it seems his mental functioning is quite worse. He's not making any sense and is having very random thoughts. He's been picking up the phone and dialing random numbers, but he doesn't know who he's calling or why and when he gets someone on the phone, he says stuff that doesn't make any sense.

So, if he calls you, which he might, be aware that he might not know who you are or why he called.

Craig thinks this is a side effect of some of the medications he's been taking and is trying to figure out which ones are the culprits.

We did not take him to the ER yesterday since he started to walk and talk a lot better. We think he just may have been really tired from all the walking he was doing over the weekend and the extra meds he took the night before. If we can't figure out why he's confused, we'll take him in to be evaluated at Feather River. 

UPDATE:
Doug got into town today and he and Craig and Becky sat down and tried to figure out why dad is getting so loopy. They are pretty sure it's the Ativan that he's been taking. It seems to scramble his brain. They are going to stop giving it to him and see if he comes back to reality. He was already getting a bit better this afternoon after it starting wearing off a bit.

Monday, March 21, 2011

Dad seems to have taken a turn for the worse in the last 2 days and is very unsteady on his feet and is getting quite confused. He needs help to walk anywhere as he is at serious risk of falling if he's left on his own. Craig is still here and Becky came home from work to be here with him also. It is a 2 man job if anyone is to get any rest at all. He is up numerous times a night and wakes up every hour or so. 

He had his blood drawn today and his numbers were fine, although his platelets a bit low so we are looking to get him a transfusion this afternoon. We will also try to get him over to the ER to have him checked out since there's not a good reason for the weakness and confusion. If he is o.k. to travel, we are also going to try to talk him into going back down to UCSF to get re-admitted. He is not safe at home and he needs more expert care than we can manage here.