Not sure what is going on?

cindysuetoyou
cindysuetoyou Member Posts: 513
in Brain Cancer #1
I don't know what exactly is happening with David. He's not answering my questions in a normal manner. When I ask a question or talk to him, his response time is slow. It's only a matter of seconds but it's not normal. If I ask more than one question, he doesn't even answer. Like if I say, "Why is the puppy scratching on my bedroom door? Does he need to go out, or is he hungry?" David just doesn't answer. It's like more than one question is too much for him. He does answer when I ask one question at a time and he makes sense and I can tell that he understands perfectly...he's just slow. That's one of the things the doctors asked me before...is his response time slow? When he was slow like that before, they said it was the brain edema and swelling that caused it. So I'm wondering if he is having brain swelling? Or is the tumor growing and causing more problems? He is scheduled for chemo on Tuesday, intra-arterial with 10x the impact of regular IV chemo. I asked the doctors if intra-arterial will cause swelling like the BBBD and they said no. But they also didn't think that the BBBD would make David so bad either, so I'm not sure if I trust them, and I'm not sure if I am okay with them doing IA on Tuesday. But David needs to be treated. I don't think that his tumor...I should be saying tumors...are just sitting there dormant while we are not actively doing chemo.

I thought that maybe I was being hypersensitive and overreacting....so I asked David if he is okay and he said yes. He had a headache earlier but he took Tylenol, oxycodone, and dilaudid, all at one time, and that made his headache better. I know that sounds like a massive amount of medicine, but I think David has developed a tolerance for painkillers and if he doesn't hit his headache hard, it escalates and then it's really hard to get rid of it.

Then I asked David if he is having those "freezing" episodes again, and he said yes. That's when I really started getting worried. I asked him if he thought we should up his steroids and he said no, that he thinks the steroids are causing it. I don't think so. I re-read all the side effects of dexamethasome and freezing up isn't one of them. However, all the side effects, especially the long term use ones, really freak me out and I'm not eager to up the dose on my own. I'll call the doctor tomorrow.

I'm so up and down. When David does good, I am just so relieved and able to do the things that I need to. When he is not doing well....my whole world seems dark and difficult and I can barely do the dishes and cook. I don't know what I would do if I hadn't been able to quit my job.

I can hear David talking to his dad and he sounds totally fine. I just don't know what to think. His older brother told me that he had just talked to David and asked David how he was doing, and David said, "Good." Maybe I am overreacting?

I'm so weary. Maybe tomorrow will be better.

Love and blessings,
Cindy in Salem, OR

Comments

  • mighty6
    mighty6 Member Posts: 47
    #2
    this sounds like edema o me
    Dear Cindy,

    What you described about David makes me recall what happened with my husband right after surgery.
    He was really slow to respond, complaining that my talk being too loud, too fast many times, I did not know anything about any tumor back then, but I knew something was not right because I don't talk fast or loud. The ICU we stayed was not a neuro-ICU, so nurses were not very experienced with those. I had to go to the residence Dr. 3 times asking about this. He finally made a call to our neuro-surgon and immediately came back with steroids and Manitol prescriptions. Thing were settled right away.

    i will definitely call his Dr. first thing in the morning.
    Take care of yourself too, please. you are such a mom. Everyone will need you be strong.

    -- Jane
  • Unknown
    Unknown
    #3
    Keeping you in my prayers
    Cindy, I don't post very often, but I try to check the boards regularly, and I just wanted you to know that I'm keeping your family in my prayers. This is such a roller coaster of a journey, and there are many times that it takes my breath away with it's intensity. David is such a trouper, and you are so valiant in caring for him. While in my case, it's my husband who is ill and not my child, I know how fiercely I love each of them, and how wrong it feels to see someone you love suffer, but especially your child.
    One of the many things I have admired about you is your strong faith, and I just wanted to share mine with you as well. There is a plan - we definitely don't understand it all with our limited human perspective, but the Lord has a plan. If we look at things with only an earthly perspective, the suffering around us is unbearable. There would just seem to be no reason for these trials - not just ours, but throughout the world. Since there is a plan, though, we each have to be faithful and do our part in mitigating that suffering, as much or as little as we can - and as we all work together to bless one another's lives, the suffering becomes slightly more bearable - because nobody is immune to suffering. We will each have sorrows which pierce our hearts to their very core, but as we bear one another's burdens, the suffering is eased just enough to continue to go forward....one stumbling step at a time. Then the greatest blessing of all occurs - the Lord carries our burdens for us, because of His love for us. He never promised us immunity from the storms, but instead, comfort during the storm.
    Because we're human, there are days that I can remember that a lot better than others, but I believe that we're also blessed even when we "no more than desire to believe." I do believe that there is life beyond this one, and that things will make a lot more sense from that perspective. I know that I will see my husband again, and that the separation, although painful, will not be permanent, and I'm thankful beyond words for that.
    Faith is a very personal thing, and I hope that by sharing mine I'm bringing comfort, not controversy, but I pray that you and your family, and all of us struggling through this difficult time will find peace.
    As for my husband, at the moment we're doing well as far as the brain tumor, but we go in for his MRI next week and we'll see what the official word is. We have many other trials, such as the fact that he's being laid off from his job, and we're going to have to figure out how to handle that, but at the moment, he's doing well with his physical health and we're very thankful.
    Peace and blessings to you, Cindy, as you so kindly wish for others, and I hope you receive some answers about David's latest struggle.
  • alutiiqmom
    alutiiqmom Member Posts: 256
    #4
    unknown said:

    Keeping you in my prayers
    Cindy, I don't post very often, but I try to check the boards regularly, and I just wanted you to know that I'm keeping your family in my prayers. This is such a roller coaster of a journey, and there are many times that it takes my breath away with it's intensity. David is such a trouper, and you are so valiant in caring for him. While in my case, it's my husband who is ill and not my child, I know how fiercely I love each of them, and how wrong it feels to see someone you love suffer, but especially your child.
    One of the many things I have admired about you is your strong faith, and I just wanted to share mine with you as well. There is a plan - we definitely don't understand it all with our limited human perspective, but the Lord has a plan. If we look at things with only an earthly perspective, the suffering around us is unbearable. There would just seem to be no reason for these trials - not just ours, but throughout the world. Since there is a plan, though, we each have to be faithful and do our part in mitigating that suffering, as much or as little as we can - and as we all work together to bless one another's lives, the suffering becomes slightly more bearable - because nobody is immune to suffering. We will each have sorrows which pierce our hearts to their very core, but as we bear one another's burdens, the suffering is eased just enough to continue to go forward....one stumbling step at a time. Then the greatest blessing of all occurs - the Lord carries our burdens for us, because of His love for us. He never promised us immunity from the storms, but instead, comfort during the storm.
    Because we're human, there are days that I can remember that a lot better than others, but I believe that we're also blessed even when we "no more than desire to believe." I do believe that there is life beyond this one, and that things will make a lot more sense from that perspective. I know that I will see my husband again, and that the separation, although painful, will not be permanent, and I'm thankful beyond words for that.
    Faith is a very personal thing, and I hope that by sharing mine I'm bringing comfort, not controversy, but I pray that you and your family, and all of us struggling through this difficult time will find peace.
    As for my husband, at the moment we're doing well as far as the brain tumor, but we go in for his MRI next week and we'll see what the official word is. We have many other trials, such as the fact that he's being laid off from his job, and we're going to have to figure out how to handle that, but at the moment, he's doing well with his physical health and we're very thankful.
    Peace and blessings to you, Cindy, as you so kindly wish for others, and I hope you receive some answers about David's latest struggle.

    Thank you
    Hi:

    Thank you for sharing your beautiful story of faith. I believe in what you said and I also believe it is good to help each other bare this awful burden. God bless you.

    Edna
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    #5
    unknown said:

    Keeping you in my prayers
    Cindy, I don't post very often, but I try to check the boards regularly, and I just wanted you to know that I'm keeping your family in my prayers. This is such a roller coaster of a journey, and there are many times that it takes my breath away with it's intensity. David is such a trouper, and you are so valiant in caring for him. While in my case, it's my husband who is ill and not my child, I know how fiercely I love each of them, and how wrong it feels to see someone you love suffer, but especially your child.
    One of the many things I have admired about you is your strong faith, and I just wanted to share mine with you as well. There is a plan - we definitely don't understand it all with our limited human perspective, but the Lord has a plan. If we look at things with only an earthly perspective, the suffering around us is unbearable. There would just seem to be no reason for these trials - not just ours, but throughout the world. Since there is a plan, though, we each have to be faithful and do our part in mitigating that suffering, as much or as little as we can - and as we all work together to bless one another's lives, the suffering becomes slightly more bearable - because nobody is immune to suffering. We will each have sorrows which pierce our hearts to their very core, but as we bear one another's burdens, the suffering is eased just enough to continue to go forward....one stumbling step at a time. Then the greatest blessing of all occurs - the Lord carries our burdens for us, because of His love for us. He never promised us immunity from the storms, but instead, comfort during the storm.
    Because we're human, there are days that I can remember that a lot better than others, but I believe that we're also blessed even when we "no more than desire to believe." I do believe that there is life beyond this one, and that things will make a lot more sense from that perspective. I know that I will see my husband again, and that the separation, although painful, will not be permanent, and I'm thankful beyond words for that.
    Faith is a very personal thing, and I hope that by sharing mine I'm bringing comfort, not controversy, but I pray that you and your family, and all of us struggling through this difficult time will find peace.
    As for my husband, at the moment we're doing well as far as the brain tumor, but we go in for his MRI next week and we'll see what the official word is. We have many other trials, such as the fact that he's being laid off from his job, and we're going to have to figure out how to handle that, but at the moment, he's doing well with his physical health and we're very thankful.
    Peace and blessings to you, Cindy, as you so kindly wish for others, and I hope you receive some answers about David's latest struggle.

    Thank you
    Thank you, cdolive, for your note.

    My faith has carried me through this, though at times I've been so weak that I'm ashamed to talk about what I believe. But I think that I am going to write a post and try to express what I believe and what I am feeling about David's and my situation.

    I share the same feelings that you do regarding faith and eternity. Your message confirms some things that I have been thinking about and coming to grips with. But I need to write a whole new post about the last few days first....

    Thank you for your message. It does bring me a measure of peace and comfort.

    Love and blessings to you and your family, and especially healing for your husband,
    Cindy in Salem, OR

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