Dear friends,
I have been taking care of Norman for the past 21 months, since Nov 2007 and while part of me is very grateful that he has made it so well thus far,another part of me is screaming why, oh why doesn't it end soon! Since his second surgery in Feb 2009,he has poor control over his emotion. He gets angry over minor things especially with the children and no one can do enough to make him happy. Sometime I feel like pulling out my hair or something like that. Then I step back and try to see things from his side. Norman has always been a very independent person and now he is not able to work or drive. His sleep is always disrupted. His social life is non existent. He complains about being bored and there is nothing to do and he feels like craps most of the time! Sob! I can feel all his frustration and anxiety. As a result, I too don't sleep well, I don't want to exercise and feel like craps too! Well, no one says life is ever easy living with cancer!Let me learn to go through the bad times and enjoy the good times. Let me be thankful even for all these trails and tribulations from God. I am blessed to know that God will never forsake me and Norman. With strength and courage from God, we will overcome. Thank you for all your care and support.
Dorothy
Thursday, August 27, 2009
Monday, August 24, 2009
Steroid withdrawal syndrome
On Friday,21st August, we saw a neurosurgeon at Sunway and Norman was diagnosed with Steroid withdrawal syndrome. What is that? Precisely what it mean, his body is suffering because we taper off the dexamethazone a week ago! And what were the syptoms?
On Thursday evening(20th August), he could not speak at all, his right side was weak,his right face was droopy and he was not steady when he walks! He couldn't even swallow well as water and food leaks out from the right corner of his mouth.He had 2 fits on thursday night.It was all so exhausting! On Friday morning we were like zhombies! And all these happens because of the devastating effects of steroid withdrawal!
What are steroids?
Steroids are hormones produced by the adrenal glands that are used to reduce brain swelling. Steroids belong to a class of drugs called corticosteroids. The steroids used to treat brain tumors are not the same as those used by athletes. The most common steroid is Dexamethasone. Norman was given steroid to treat his brain edema.
Usually he will take it for about 2 weeks and I will taper it off very gradually, about 1 mg daily by the third week. Since his second surgery in Februay, he has been on this steroid cycle several times because the MRI scan keeps showing massive edema and now the fits keep coming back. So when will all these steroid madness ends? I dont know. The Drs are trigger happy with the steroid and we are drowning with fear from this withdrawal symptoms not to listen to them. Isn't there any other treatment? I wish I know!
For the time being, Norman's condition have improved after taking the steroid. He still could not talk in proper sentences but at least he can say something! We are praying fervently for a complete and speedy recovery.
May God bless you all.
On Thursday evening(20th August), he could not speak at all, his right side was weak,his right face was droopy and he was not steady when he walks! He couldn't even swallow well as water and food leaks out from the right corner of his mouth.He had 2 fits on thursday night.It was all so exhausting! On Friday morning we were like zhombies! And all these happens because of the devastating effects of steroid withdrawal!
What are steroids?
Steroids are hormones produced by the adrenal glands that are used to reduce brain swelling. Steroids belong to a class of drugs called corticosteroids. The steroids used to treat brain tumors are not the same as those used by athletes. The most common steroid is Dexamethasone. Norman was given steroid to treat his brain edema.
Usually he will take it for about 2 weeks and I will taper it off very gradually, about 1 mg daily by the third week. Since his second surgery in Februay, he has been on this steroid cycle several times because the MRI scan keeps showing massive edema and now the fits keep coming back. So when will all these steroid madness ends? I dont know. The Drs are trigger happy with the steroid and we are drowning with fear from this withdrawal symptoms not to listen to them. Isn't there any other treatment? I wish I know!
For the time being, Norman's condition have improved after taking the steroid. He still could not talk in proper sentences but at least he can say something! We are praying fervently for a complete and speedy recovery.
May God bless you all.
Thursday, August 20, 2009
MRI, fits, brain edema
On 13th August,2009 Norman had MRI of the brain at Sunway medical center. He have been having difficulty with his speech lately but can still manage to carry on a conversation slowly. The scan still shows a tumor about 4cm by 3.5cm with massive edema and lots of necrotic tissue. The Dr was not so worried and send us home with more fits medication.
2 days ago, Norman finds that his speech was not only slow but slurred as well. The symptoms of the disease is progressing- anger, aggression, weakness on one side( he was not able to hold a spoon) and extreme difficulty to say anything! It is all so terrifying. I am trying to keep my hope up but the fears keep creeping in. Again and again my faith have been tested! My wonderful children have been very supportive and we pray constantly for a miracle from God.
At this point, I want to thank all our friends who have upkeep us with your fervent prayers. Knowing you all are there for us have been a great help. Thank you.
Dorothy
2 days ago, Norman finds that his speech was not only slow but slurred as well. The symptoms of the disease is progressing- anger, aggression, weakness on one side( he was not able to hold a spoon) and extreme difficulty to say anything! It is all so terrifying. I am trying to keep my hope up but the fears keep creeping in. Again and again my faith have been tested! My wonderful children have been very supportive and we pray constantly for a miracle from God.
At this point, I want to thank all our friends who have upkeep us with your fervent prayers. Knowing you all are there for us have been a great help. Thank you.
Dorothy
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