Wednesday, January 21, 2009

more tests

Brian spent the entire day yesterday vomiting. Within one hour of eating absolutely EVERYTHING he ingested found its way back out the way it entered until about 5:00 this evening. I called the doc yesterday hoping they would simply give him an IV anti-nausea boost or check his electrolytes for dehydration. Unfortunately, they decided to have us come in for labs and an appointment with the Nurse Practitioner.

Now, no offense whatsoever to nurse practitioners out there, but we are a bit beyond this. Brian's cancer is well-advanced. We have been dealing with the same worsening conditions for 2 years now. We have been dealing with this brain cancer for nearly 12 years. For us to sit down with a nurse to tell her the symptoms is a waste of our time. I knew what would happen. We would see this nurse, repeat our story, state our case, she would have to consult with the doctor because she is baffled at the vomiting (as were the oncologist and the neuro-surgeon a couple weeks ago), she would come back with a recommendation from the doctor (who has time to talk to her, but didn't have an available appointment time for us to bypass this stupid process), field our questions, ask the doctor again and get back to us again.

And, not to repeat myself, but that is precisely what happened. Read above to see how our appointment went today. Moment by moment. Only it transpired over two f@#$ing hours. TWO HOURS we were there from lab draw to the time we walked out. And I should have insisted we see the doc, but I am becoming worn down from all this and I just bend over and then come home and cry. Or cry in the doctor's office. Or cry in the car. Or all of the above.

Anyway, I also explained about the issues Brian is having with confusion and memory. He is also a bit more unstable. Part of this is that he is incredibly weak from not keeping anything with nourishment in him for 2 days. His labs were all fine, though. So, she relayed this information to the doctor and he ordered the MRI for tomorrow, January 22 at 10:00 am. We will have those results regurgitated to us on Friday. So this means that by the end of the day on Friday, Brian will have been in the Cancer Center for an appointment or labs 5 times, at the hospital for tests 2 times, and met with the surgeon once- all since January 5. So forgive me if I get a bit crabby at this process. I think this is a world record for reaching our out of pocket maximum with our insurance. PLUS, I am sick of rearranging lives, appointments, babysitting and anything else every time I turn around. SICK OF IT ALL!!!!!!! And that is with people around me making it easy to handle. I feel for anyone who is doing this on their own. YIKES!

Anyway, Brian's confusion and memory and instability are more concerning to them than the vomiting. So, we left with the nausea basically unaddressed (surprise, surprise - 3rd visit for this reason and nothing comes of it, yet we waste our time going in over and over again). Regardless, the MRI is scheduled for tomorrow to see if the tumor is growing and if there is any swelling associated with it causing Brian's issues. If it is, I don't even venture to guess what we will do, if anything, except start back on steroids to help with the swelling.

To explain Brian's memory and confusion issues, I would use the analogy of Alzheimer's. Not that I have any experience with that disease, but what he is going through is somewhat like you see on TV. He forgets things that have recently happened or why we are going somewhere or where we are going while we are in the car, then he kind of snaps out of it and doesn't remember that he was having issues. He is hearing strange things in his left ear sometimes. Then he doesn't remember that he had a hearing issue. I have to remind him of things many times a day and he will have no idea what I am talking about each time. Then, suddenly he will ask me why I keep repeating things to him. But, he is nice about it and he smiles a lot and is in a good mood about it all. It is more me right now that is having a hard time keeping it all together.

Today, two girlfriends came by to help me clean the house. Thank God. My house is cleaned top to bottom thanks to their help. Bed linens are clean and tomorrow I can concentrate more on clothing laundry. I think Wednesday is becoming my designated cleaning day and I have another friend offering to come help me next week. Pending on how the tests results go on Friday, I may request even more help in this arena. We will see.

I am set up as far as food goes for a while, thanks to my home-girls!

Also, the shoveling of the driveway by my neighbors has been a godsend. I have to keep that very free of snow and ice as Brian is becoming more of a fall hazard. He fell in the garage today getting into the car. I couldn't help him up, so I had to get a retired neighbor to help us. He gladly did so. I begged Brian and even had to throw in some tears to use a wheelchair at the cancer center. I asked him to do it for me, not himself. I can't bear to pick him off the ground again.

I have some other issues I may need some help with regarding automobiles, registration and service, etc. I am waiting to see what happens Friday. Right now I just want to spend time with Brian. All he does is watch TV all day. I can do that with him. I was doing it well right before the holidays. I haven't done it much since the first of the year, but I feel pretty confident that if I get some relief with the household stuff, I can do that very well.



  1. Count me in again next Wed. morning!! ...and anything else you need!! I love you guys!


  2. This sounds so very very hard. I am so mad about your frustrating "doctor's" appt. Aaargh.

  3. Just want you to know that i am praying for you and your family...Hang in there...God Bless..Thank you for the update...

  4. Angie, I don't have any words to express how sorry I am that you have had to endure all of this. What I have so loved about the journey I have been on with Christ these last 11 years is that He is big enough for any emotion I have. We have the right, because He is our heavenly Father, to pour out our true feelings to Him day or night. This is one of my very favorite Psalms to go to when I cannot understand what He is doing or where He even is. I can't comfort you, but God's Word surely can.

    Psalm 77

    1 I cried out to God for help;
    I cried out to God to hear me.
    2 When I was in distress, I sought the Lord;
    at night I stretched out untiring hands
    and my soul refused to be comforted.

    3 I remembered you, O God, and I groaned;
    I mused, and my spirit grew faint.

    4 You kept my eyes from closing;
    I was too troubled to speak.

    5 I thought about the former days,
    the years of long ago;

    6 I remembered my songs in the night.
    My heart mused and my spirit inquired:

    7 "Will the Lord reject forever?
    Will he never show his favor again?

    8 Has his unfailing love vanished forever?
    Has his promise failed for all time?

    9 Has God forgotten to be merciful?
    Has he in anger withheld his compassion?"

    10 Then I thought, "To this I will appeal:
    the years of the right hand of the Most High."

    11 I will remember the deeds of the LORD;
    yes, I will remember your miracles of long ago.

    12 I will meditate on all your works
    and consider all your mighty deeds.

    13 Your ways, O God, are holy.
    What god is so great as our God?

    14 You are the God who performs miracles;
    you display your power among the peoples.

    15 With your mighty arm you redeemed your people,
    the descendants of Jacob and Joseph.

    When I cannot find Him today, I remember what He has done in the past. He has been faithful in the past; He will remain faithful today and tomorrow, even if I can't yet see that to be the truth.

    With much love and fervent prayers for you and Brian, Shawn from Tennessee

  5. Hang in there Angie. I am sure it is so so hard! I was going to tell you that the drugs they put Chet on after his Surgery (pretty sure it was Kepra) gave him terrible memory issues. Like would forget in 10 steps what he was doing. Maybe the meds?? Just saying it effected Chet harshly.

    Still praying for you, Brian, and the boys....

  6. Hey Angie, KEEP BELIEVING!! We miss you lots, and I wish we were closer to be able to help you out. Will and Aaron miss Gavin and Grant lots! Ya'll are in our daily prayers. We love you!
    Karen, Michael, Will & Aaron

  7. Angie, One would wonder if his vomitting is related somehow to his cancer/increase intracranial pressure. I don't know what medications Brian is taking, if any, or what medication he has tried for the vomitting. In a few patients that have not responded to reglan (and cisapride when it was available) I have had good success using marinol. Something to consider. God bless, Paul

  8. You all are and always will be in our prayers. I hope you get the time to just lay down and watch some tv with him soon.

  9. Angie,
    You have every right to rant and rave and cry. I too have been the caregiver and been shunted off to the nurse practioners on occassion. It sounds like this is the time to insist that the NP is not the avenue and side tracking the main issue of vomiting is no longer acceptable.

    Can you request that the doctor call you directly during his office hours and then tell him the main issue and ask for help with that only? We are fortunate that our primary care physician keeps in touch with all the other specialists and pulls everyone together when necessary.

    DH is a dementia patient and had a severe staph infection along with complications in October and November. With the help of our primary everyone worked together and DH is now healthier and more in touch with his world than he has in 12 months. Is there someone in your list of physicians who can step into this position.

    My prayers are with you daily and I do know some of what you are going through. 12 years is a long time, but remember the precious moments and they along with God will get you through every future moment.

    Your sister in Christ

  10. Angie,
    Remember, I am just up the road and only work 3 days a week. Call any time.

  11. Angie,
    What a day - I hope Friday gives you some answers from the doctors. Let me know if I can do something for you.

  12. There is just nothing I can do to alleviate the pain and misery you are dealing with. All I can do is pray for you, cry for you, and leave the rest up to the Lord. He is with you, I know.

    You are amazing; You may not feel that it is true, but I do.

  13. Please know you're all in my heart and prayers friend. Sending you strength at mock speed.

  14. Hugs, my friend. Lots and lots of hugs.

  15. I'll be there every Wednesday...from here on out...whatever you need!!!!!!!