Just wanted you to know you and David are in my thoughts!

sadinholland
sadinholland Member Posts: 248
in Brain Cancer #1
Cindysuetoyou,

Just wanted you to know that you and David are in my thoughts and I said a prayer for him for his appointment tomorrow. God Bless!

Comments

  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    #2
    Thank you!
    Thank you very much, sadinholland! I appreciate it very much. Tomorrow we are meeting with someone who I thought was a "case management team" but turns out to be pallative care. They keep telling me that pallative care is not hospice, but I still feel like it's an ominous thing. They say pallative care is to help people deal with chronic conditions but then why were we not referred to pallative care when David was first diagnosed? When the pallative people called to set up the appointment, I told them that we were not coming in for any end of life type discussions. I said that our NO referred us for help with pain management and also for pointers on how David can live independently and safely at home. They said that they'd mark David's file that we didn't want to talk about end of life stuff. I hate to come across as an overbearing control freak, but David doesn't need to hear that kind of talk the day before chemo and before starting Avastin.

    Did I mention that we for sure will be doing Avastin? On one hand, I'm glad, because I think it will help David feel better. On the other hand, I'm really sad, because I know our NO likes to save Avastin as a last resort type of treatment. His nurse told me that they have had people on Avastin for long periods of time---like for two years. Then what? I didn't ask. And it makes me sad to think that they feel like two years is a long time. I guess it is if you are doing a harsh chemo for that long. But it's not very long if that's all the time you have left to live. But who knows?---only God. Still trying to take it one day at a time.

    Thank you again for your thoughts and prayers.

    Love and blessings,
    Cindy
  • Raani01
    Raani01 Member Posts: 70
    #3
    cindysuetoyou said:

    Thank you!
    Thank you very much, sadinholland! I appreciate it very much. Tomorrow we are meeting with someone who I thought was a "case management team" but turns out to be pallative care. They keep telling me that pallative care is not hospice, but I still feel like it's an ominous thing. They say pallative care is to help people deal with chronic conditions but then why were we not referred to pallative care when David was first diagnosed? When the pallative people called to set up the appointment, I told them that we were not coming in for any end of life type discussions. I said that our NO referred us for help with pain management and also for pointers on how David can live independently and safely at home. They said that they'd mark David's file that we didn't want to talk about end of life stuff. I hate to come across as an overbearing control freak, but David doesn't need to hear that kind of talk the day before chemo and before starting Avastin.

    Did I mention that we for sure will be doing Avastin? On one hand, I'm glad, because I think it will help David feel better. On the other hand, I'm really sad, because I know our NO likes to save Avastin as a last resort type of treatment. His nurse told me that they have had people on Avastin for long periods of time---like for two years. Then what? I didn't ask. And it makes me sad to think that they feel like two years is a long time. I guess it is if you are doing a harsh chemo for that long. But it's not very long if that's all the time you have left to live. But who knows?---only God. Still trying to take it one day at a time.

    Thank you again for your thoughts and prayers.

    Love and blessings,
    Cindy

    I am hopeful
    Cindy,
    I am in the waiting room now ,Jacob is having the Avastin for the first time. the nurse gave me all the materials to educate me about the drug and sideeffects.Well, I pray he will be in that statistcs who do not have much side effects.Also, I am holding on to the hope that our NO said about a patient who had Avastinfor a year and tumor shrunck. and now on remission for 14 months.Let's pray together for a favorable response for Jaocb, David and all who goes through this treatment.

    Raani
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    #4
    Raani01 said:

    I am hopeful
    Cindy,
    I am in the waiting room now ,Jacob is having the Avastin for the first time. the nurse gave me all the materials to educate me about the drug and sideeffects.Well, I pray he will be in that statistcs who do not have much side effects.Also, I am holding on to the hope that our NO said about a patient who had Avastinfor a year and tumor shrunck. and now on remission for 14 months.Let's pray together for a favorable response for Jaocb, David and all who goes through this treatment.

    Raani

    Yes, let's pray together!
    Thank you, Raani, for the encouragement. I will be praying for Jacob and for David. I'm hoping and believing that Avastin will be a help to both of them.

    Our doctors at NIH were surprised that David had not been on Avastin already. They really recommended Avastin and thought it would help David to feel better.

    David just started having a new issue. His vision is blurry and sometimes he sees double. When he was first diagnosed with anaplastic oligodendroglioma, that was one of the symptoms that made him seek medical help...double vision. We both are concerned about his vision...every time we go in for a checkup, one of the first things they would ask David was if he was having blurry or double vision. I think that's a significant warning symptom....we will see the doctors tomorrow when David is admitted so maybe we can get some feedback from them.

    The meeting today with the case management team...pallative care, whatever, was pretty much a waste of time. I won't go into the details, but they really didn't have any suggestions or ideas on how to help David. They may be able to set us up with Meals on Wheels and that would be a benefit. But other than that...no help. We liked the doctor...he was very nice and he listened and let us talk. We talked about some tough, hard things...about David dying, that kind of thing. But we were pretty strong and resolute, I guess you could say, and there really isn't a whole lot more that he could say beyond "I'm sorry that you are going through this." Today was one of our strong days so we we were able to cope with the conversation and then go on our way. It helped a lot that David got to go back to his apartment today after that meeting.

    David is so happy to be back in his apartment. I'm in his bedroom, surfing the internet, and he's out in the living room, having some munchies with his closest friend and former college roommate. I wish I had taken a picture of David earlier, lying on the couch, watching TV and using his iPad. He had such a contented, satisfied look on his face. He was talking to a friend on the phone and I heard him say, "It feels so good to be home." He said it with such deep emotion and gratitude that it brought tears to my eyes. The bad moments are so painful...but the good moments are so incredibly sweet and special....I savor them.

    Please keep us updated on how Jacob is handling Avastin and how he is doing in general. I will be thinking about both of you and praying for Jacob and for you too. And I'll let you know how David does on Avastin too. David has an MRI tomorrow also....trying not to stress about that either.....

    Love and blessings,
    Cindy
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    #5
    cindysuetoyou said:

    Thank you!
    Thank you very much, sadinholland! I appreciate it very much. Tomorrow we are meeting with someone who I thought was a "case management team" but turns out to be pallative care. They keep telling me that pallative care is not hospice, but I still feel like it's an ominous thing. They say pallative care is to help people deal with chronic conditions but then why were we not referred to pallative care when David was first diagnosed? When the pallative people called to set up the appointment, I told them that we were not coming in for any end of life type discussions. I said that our NO referred us for help with pain management and also for pointers on how David can live independently and safely at home. They said that they'd mark David's file that we didn't want to talk about end of life stuff. I hate to come across as an overbearing control freak, but David doesn't need to hear that kind of talk the day before chemo and before starting Avastin.

    Did I mention that we for sure will be doing Avastin? On one hand, I'm glad, because I think it will help David feel better. On the other hand, I'm really sad, because I know our NO likes to save Avastin as a last resort type of treatment. His nurse told me that they have had people on Avastin for long periods of time---like for two years. Then what? I didn't ask. And it makes me sad to think that they feel like two years is a long time. I guess it is if you are doing a harsh chemo for that long. But it's not very long if that's all the time you have left to live. But who knows?---only God. Still trying to take it one day at a time.

    Thank you again for your thoughts and prayers.

    Love and blessings,
    Cindy

    CindySue
    I hope all goes well with the meeting and they are not pushy. Pallative is not hospice. Hopefully they will give you good resources to help David.If they have the Hot Pink paper on the desk you tell them off for all of us that are pulling for David on here.
    I will be thinking of you on his first avastin day, Im sure it will go well. Im praying for David and you. You are a wonderful Mom.

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