Went to radiation therapy appointment this morning. Met with Dr. Hahn who is a very nice lady. Chris likes her. Dr. Hahn confirmed the diagnosis of gliomatosis cerebri and talked about the effectiveness of the radiation therapy. She said the treatment plan would be to do therapy 5 days a week for 5-1/2 weeks. However, before starting she wants to review the case in "case conference" tomorrow in order to get input from all specialties. In addition, she said we won't start anything until after Chris sees Dr. Green, Neuro oncology in Los Angeles. Both chemo and radiation are part of the treatment plan and decided on together for the whole picture rather than separating the two types of oncologic treatment. We see Dr. Green on Thursday morning the 8th and then have a CT mapping appointment with Hahn for preparation for the radiation treatment. Dr. Hahn said Chris will have to wear a kind of mask for the rad treatment so w will see how that goes since he is so caustrophobic. Hopefully a little ativan or zanax will solve the problem and he will breeze right through.
Meanwhile, received a phone call from Dr. Butowski who provided the results of the tumor board 2nd opinion from UC San Francisco. Unfortunately he too confirmed the diagnosis of gliomatosis cerebri and said that the chemo drug that should be used for treatment is called Temodar. This is the same drug that Dr. Miller, the hem/onc doc in Fontana told me about when he came for the hematology inpatient consult. Still waiting for the opinion on the pathology from Best Doctors. Staple removal appointment has been rescheduled from tomorrow to Friday.
Well, we had the pleasure of dinner provided by Barb and Cliff Taylor. The BBQ beef was so tender and tasty on the fresh rolls. My sister will be so disappointed that she missed cheesy potatoes. The salad was really good and the cookies were delightful!! Thanks you guys for bringing the dinner. It was nice seeing Eric too. We are blessed to call you our friends.
Join me in saying goodbye to November and hello to December. Our 2011 Christmas promises are on their way. Keep us in your prayers, we will keep you in ours. CJSRJ
Wednesday, November 30, 2011
Tuesday, November 29, 2011
Tuesday November 29, 2011
Hard to believe it is the 29th of November. Also hard to believe that all of this has happened in such a short time. Saw my friend Carolyn tonight and even though the last time I saw her was just last month, it was before we even had an inkling of the events that were to come in the time that transpired between then and now.
Colleen and Randy went home today. :-( As I told them, I don't even have the words to express my gratitude for the love and support they have given us since the beginning and especially this past week while they have been here. What an incredible blessing they are.
Chris was up all day today. Physical Therapy was here for a session and left instructions for home exercises which Norma made sure that he did tonight. He tried to get out of it but she won't be having any of that! Last night Chris was up several times during the night and at one point, fell in the bathroom so Arlo installed a grab bar and made sure that any areas of safety concern are covered with pillows tonight.
Lois drove up from Carlsbad for a visit which was very appreciated and very much enjoyed. We will plan to start working on the "Chris sitting" schedule tomorrow. After we find out what the plan for radiation therapy is tomorrow morning and have a good idea of when we would need some help, I will post the times that we are looking to fill as I think it will be easier to do it that way than to try to call everyone on the list. Some of the times may be during therapy sessions as physical and occupational will be going on during the week as well. As I am going to work during the week, much of the activities with Chris are left to Norma and Arlo. I am hoping to get as many people as possible to help relieve them from the responsibility of always being the daytime caretakers. They may not ask for it very much, but they will definitely need a break several times during the week. I'd love to see them get a scheduled golf day each week where they can plan to go play 18 holes. That will be one of my primary goals when the schedule for sitting is made.
Conversations with Chris right now are a combination of reality mixed with confusion. I'm hoping that the confusion continues to stem from the medications that he is on and will decrease as the chemo and radiation therapies begin to work on the cancer and the medications for swelling are decreased or even discontinued.
So, radiation therapy consultation tomorrow and we'll go from there...
As you pray for us, would you also include Chris's cousin Barb and Aunt Elaine as Aunt Elaine has been placed on hospice. We wish we could be of more support to them right now than we can be, but we can keep them in our prayers and ask for those supporting us through prayer to support them as well.
With much love,
CJSRJ
Colleen and Randy went home today. :-( As I told them, I don't even have the words to express my gratitude for the love and support they have given us since the beginning and especially this past week while they have been here. What an incredible blessing they are.
Chris was up all day today. Physical Therapy was here for a session and left instructions for home exercises which Norma made sure that he did tonight. He tried to get out of it but she won't be having any of that! Last night Chris was up several times during the night and at one point, fell in the bathroom so Arlo installed a grab bar and made sure that any areas of safety concern are covered with pillows tonight.
Lois drove up from Carlsbad for a visit which was very appreciated and very much enjoyed. We will plan to start working on the "Chris sitting" schedule tomorrow. After we find out what the plan for radiation therapy is tomorrow morning and have a good idea of when we would need some help, I will post the times that we are looking to fill as I think it will be easier to do it that way than to try to call everyone on the list. Some of the times may be during therapy sessions as physical and occupational will be going on during the week as well. As I am going to work during the week, much of the activities with Chris are left to Norma and Arlo. I am hoping to get as many people as possible to help relieve them from the responsibility of always being the daytime caretakers. They may not ask for it very much, but they will definitely need a break several times during the week. I'd love to see them get a scheduled golf day each week where they can plan to go play 18 holes. That will be one of my primary goals when the schedule for sitting is made.
Conversations with Chris right now are a combination of reality mixed with confusion. I'm hoping that the confusion continues to stem from the medications that he is on and will decrease as the chemo and radiation therapies begin to work on the cancer and the medications for swelling are decreased or even discontinued.
So, radiation therapy consultation tomorrow and we'll go from there...
As you pray for us, would you also include Chris's cousin Barb and Aunt Elaine as Aunt Elaine has been placed on hospice. We wish we could be of more support to them right now than we can be, but we can keep them in our prayers and ask for those supporting us through prayer to support them as well.
With much love,
CJSRJ
Monday, November 28, 2011
Monday, November 28, 2011
Here we are at evening time again. Must be the holidays...the Grinch is on t.v.
Only one more night with Colleen and Randy here. :-( I will miss them both so much when they go back home. What a tremendous blessing they have both been. Colleen spent most of the day on the phone today pretending to be me so she could get appointments scheduled for Chris. Randy does a great job of keeping Chris on task with his walking and getting around. I love them both so very very much. Chris was up all day today and quite a bit of his conversations can be so appropriate, then he will throw in a few things that make absolutely no sense. So we have an appointment scheduled for Wednesday with radiation oncology and Thursday with neurosurgery for follow up. Then, next Wednesday we have an appointment with the medical oncologist in Los Angeles. Phys Therapy will be here tomorrow and Occupational Therapy along with a home health aide will start coming sometime this week or next.
Looking for small improvements every day which we have been seeing, so I am happy for that.
Please continue to keep us in your prayers and we will continue to keep you in ours. Much love, CJSRJ
Only one more night with Colleen and Randy here. :-( I will miss them both so much when they go back home. What a tremendous blessing they have both been. Colleen spent most of the day on the phone today pretending to be me so she could get appointments scheduled for Chris. Randy does a great job of keeping Chris on task with his walking and getting around. I love them both so very very much. Chris was up all day today and quite a bit of his conversations can be so appropriate, then he will throw in a few things that make absolutely no sense. So we have an appointment scheduled for Wednesday with radiation oncology and Thursday with neurosurgery for follow up. Then, next Wednesday we have an appointment with the medical oncologist in Los Angeles. Phys Therapy will be here tomorrow and Occupational Therapy along with a home health aide will start coming sometime this week or next.
Looking for small improvements every day which we have been seeing, so I am happy for that.
Please continue to keep us in your prayers and we will continue to keep you in ours. Much love, CJSRJ
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