Wednesday, October 20, 2010

More Tests....

I am not too sure right now how to start this update but I think that enough things have happened now that it is important to get this out to everyone.

Over the last few weeks, and increasingly in this last week, Daddy has been changing in his ability to be in a coherent state of mental awareness. His dream state has increased and it is getting difficult to talk him back into reality when he gets his mind set on a plan of action. Last week I stepped outside to bring one of the dogs in and came back into find Daddy on the floor. He had jumped up in a sleep state and was trying to accomplish the tasks that his dream told him to do. He was on the floor because he was still hooked to his feeding pump and had tripped and rolled. Nothing was hurt (hip was fine) but I had to call for help to get him off the floor as I explained to him over and over that he wasn't missing an important exam from his college days.

I could go into detail explaining how he recognizes people and then not in the same conversation, has a correct time line and then not in a ten minute window, sleeps so much more and that affects his stability and strength.....but all of the stories would only leave you shaking your head like we are and asking, "What changed so quickly?"

I had him at the hospital yesterday for an oncology check up and the doctor noted enough change in him (finally) that he wanted to admit him for testing. We agreed to the testing but brought Daddy home in the middle of the night instead of admitting him. We know very well that once he is admitted into the hospital for "observation" we will have a hard time getting him back out.

Testing: head CT, blood work, ammonia level, blood sugar, EKG, hidden infections, potassium changes, x-rays.......everything came back normal. There is some talk that it is minutely possible his pain patch is causing this. I disagree. I don't believe that after using the same medications for so long there would be a sudden change like this. I personally believe this has a lot to do with his last chemo treatment. I think that God made our bodies to cope and cope and cope until it can't right itself any longer and then shuts down to the basics as a re-boot (when possible).

Even still, his doctor is pushing chemo treatment. He told me yesterday before tests that if there was a brain lesion found then he would want to stall chemo for the purpose of aggressively radiating the brain lesion and then go back to the chemo regime. I just don't understand that. Daddy is a hospice patient afflicted with stage 4 cancer and has had a firm DNR order for many months. I understand that a physician is obligated to offer paths of choice but why can't he really address his quality of life. Daddy was so much better (going out for errands, joking around, sampling foods) before this last treatment. And yet this doctor treats me like I am the monster trying to rob Daddy by wanting the chemo stopped. If he would only say to Daddy that it is hurting him more than helping him then I know Daddy would listen.

grrrr.....I am venting. I want to fix this but my hands are respectfully tied until Daddy is completely in a state of not making his own decisions. It feels like I am slamming my head against a wall repeatedly.

But right now we are in the stall window of time. Daddy is still very strong physically and has times of being completely here. And when he is here he is totally here and almost doesn't understand our concerns. He doesn't completely accept 100% of what we say is happening. I wonder if this is like when he was sort of out of it from fatigue during rehab and will snap back to himself after a window of rest. I don't have definite information to give family that are not right here to see for themselves and that is hard.

Some are asking how I am doing. Really I am fine. My cousin is completely beside me and we are talking through all decisions together as she defers to my wishes in every situation. She tag teams with me when she is not working to give me some time to actually sleep. I am so grateful for her skills as a nurse to help me wade through all of the medical jargon and ridiculous red tape of a military hospital.

I am grateful for our wonderful hospice nurse that is so patient and encouraging to me. She has even given me her personal number to contact her with which I think is a huge gesture of trust and compassion on her part.

I am grateful for God standing with me in every second of the days and nights. You know that whisper of condemnation I battle all the time that tells me I should have done better with.....(fill in the blank with whatever)? Well when I found Daddy on the floor last week the first thing I heard in my heart was, "Julie this is not your fault. You can't watch him every second of every minute." And I believed it with no questioning. Wouldn't you agree that is a huge blessing of progress for me?

Ha! I am grateful for my new laptop so I can sit here next to Daddy while he sleeps and still be able to let you know what is going on.

I will keep you posted with information as I know more.

Even still, know that every day has purpose and destiny even when it looks clouded with what we don't expect. Have a blessed and wonderful day today and enjoy your times filled with purpose and blessing.


  1. Wow, thank you for sharing your heart and life. It really is a blessing.
    I am sorry about the stubborn snobbish doctors. I can imagine how frustrating that must be for you.

    And....for the most touching cry point of your email (and yes, almost every email of yours does. Good or not so good, I always get touched and cry in some way, lol. I'm just a big softy I guess.)
    "Well when I found Daddy on the floor last week the first thing I heard in my heart was, "Julie this is not your fault. You can't watch him every second of every minute." And I believed it with no questioning. Wouldn't you agree that is a huge blessing of progress for me?"
    I don' fully know why, but I needed to hear that. God is so cool like that. He can speak it to YOU, then when you share...He uses it to speak to ME. ...and I am sure others as well, but I can't speak for them. lol.

    And the other part I really needed to hear today: "now that every day has purpose and destiny even when it looks clouded with what we don't expect." Where DO you get this stuff Mama Julie? I really needed to be reminded of that today.

  2. Oh, Jules...I've been there!!!! I beat myself up over so many things as I cared for my are doing your best with the time and understanding you've been given!!!! Just remember THAT!!!! I'm praying for you!!! Love you!!! Janine XO

  3. A older sweet lady in my Wednesday morning woman's study group at church (whew, that was long) has had to stop coming. She has moments that she is very much aware of everyone and where she is and then suddenly doesn't. Such a odd process to go through. You are doing good - hanging in there and what a blessing for you to have had the God moment- that positive, reinforcement of all the good you are doing and how some things are out of your hands.

    Get a good night rest!

  4. I am really sorry that you are having to go through this and that your daddy has to go through it too.
    Chemo can make you very confused and muddly and if he has had lots of it, then it might take ages for him to get it out of his system.
    I hope it won't be a lasting thing.
    I do know that it can be worse having to see someone else suffer than to actually go through this yourself.
    I hope that you'll get a good nights sleep because you need that to cope.
    God Bless.
    Maggie X

    Nuts in May


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