Newly diagnosed and exasperated

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Newly diagnosed and exasperated

by slacy40 on Mon Oct 22, 2012 10:23 AM

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My husband was diagnosed with Anaplastic Olio Sept 19.  He had two tumors in his right frontal lobe.  The Neurosurgeon was able to remove one, and unable to remove or debulk the larger one.  The symptoms we were noticing moderately before his surgery are worse now.  His personality has completely changed (although we do see glimpses of his normal self occasionally), he cannot walk far without falling, constant headaches,  cannot stay on task, and most recently he had a seizure.

They recently doubled his decadron and put him on Keppra. He will start radiation therapy this week.  We are still waiting to find out about deletions.

I read on here about how people have continued on with their lives, gone back to work, and lived productive lives.  Right now I cannot imagine how my husband will ever be able to go back to work.  He is an electrician and has a very labor intensive job. 

I also worry about our finances.  My daughter had to drop out of college because I could no longer pay $900 a month in tuition, I'm worried about just putting food on the table.  I work in the am and my daughter works in the pm.  My oldest child moved to our hometown and is helping care for my autistic child. 

Everything I've read says we have 3 to 5 years.  Our Dr. says we have 5 to 15 years.  I feel guilty because I just can't imagine dealing with this terrible cancer for that long.

Reading your comments gives me hope that one day my husband might return to his "normal" self, but right now I'm very discouraged.  My husband and I have been married 25 yrs, and I will be here for him until the end. 

Thanks for being a sounding board. 

 

 

 

 

 

 

 

 

 

 

 

RE: Newly diagnosed and exasperated

by siblingof on Mon Oct 22, 2012 11:56 AM

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Hi slacy. My first two thoughts: The decadron is quite likely to be the cause of your husband's personality change. If he later tapers off this, you should see an improvement. And if you're in the US, your husband should be eligible for disability, since it sounds like he's not able to work. Go to the social security office --or go online-- and find out about this. The social worker at your cancer center can also help you with this. My sister was never able to work after diagnosis and the people at SS were very kind and helpful.

RE: Newly diagnosed and exasperated

by huxley2006 on Mon Oct 22, 2012 01:19 PM

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It’s not going to be easy. In fact in will probably get worse before it gets better. That being said there are many people on this board in similar situations living productive lives.

Doesn't mean we don't live our lives with a certain amount of fear (Every Headache, Every Scan, etc.) but eventually you learn to cope, accept and maybe even thrive.

Remember to keep informed (latest vaccine trials, new medications and procedures) always have a plan for the next step and get good knowledgeable doctors.

Hux....

 

Hux.....

 

 

 

 

RE: Newly diagnosed and exasperated

by slacy40 on Mon Oct 22, 2012 10:58 PM

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Thank you.  One of the very first symptoms my husband had that made us suspect something was wrong was his personality changes.  Fortunately I haven't noticed any bad side effects from the Decadron (and it has greatly improved) his headaches.  The Dr.'s had weaned him off the decadron, but almost immediately put him back on it, and since having a seizure a few days ago, doubled it.   I'm hoping once he starts his radiation his brain swelling will decrease and he can be weaned from the decadron again.

I was notified today that he was approved for Social Security disability.  It took less than a month to get approval.  You are right, the people at SS were very helpful. 

 

RE: Newly diagnosed and exasperated

by modesta on Tue Oct 23, 2012 12:47 PM

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Stacy, it breaks my heart to read your story.  It brings back some hard memories....   My husband fought for 31months, he too was not able to work after dx, I have polio and walk on crutches (but am able to work) so it was very hard taking care of him the last 3-4 months but Idid it (with help from my daughter, son and SIL) so you just hang in there, God will give you strength and you will surprise yourself!!!

((hugs))

 

RE: Newly diagnosed and exasperated

by cayus on Tue Oct 23, 2012 01:37 PM

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I am so sorry for your diagnosis.  My husband has Anaplastic Astrocytoma III and they could not remwhole tumor either.   Because of personality and cognitive function posty surgery, He was also deemed permanently disabled and could not return to work.  We got in immediate contact with Social security and they were awesome.  Make sure you apply on behalf of your children as well.  Everything helps. 

I never thought I would get him back after that surgery,but once they got him off the decadron and Keppra.  We have a new Jamie a much closer to the old one.   It is a new normal and we are plugging away.   Never lose hope.  Your husband is lucky to have you fighting for him..

 

 

RE: Newly diagnosed and exasperated

by johngiustino on Wed Oct 24, 2012 02:40 PM

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I would consider disability through social security as well as anything that might be available through your state.  For SS, there are diseases for which they allow a compassionate allowance and you can get your check right away.  Here is the list:

http://www.ssa.gov/compassionateallowances/conditions.htm

It may be that your husband's diagnosis falls in this category (glioma III?).  I have heard on this bulletin board that you have to be careful how to apply, because if you mess up the application, you can get caught up in a bureaucratic mess. I know money is tight, but you may want to consult a lawyer who specializes in SS disability.  If you decide to apply on your own, you can start a new message on this bulletin board and consult with people who have gone through the process (I have not).  

I would also get a consultation from another neurosurgeon. If you have insurance your insurance company can approve this and their maybe another neurosurgeon that can get the other tumor out.  

I wish you the best going forward,

JG

RE: Newly diagnosed and exasperated

by CandyWallen on Thu Oct 25, 2012 03:06 PM

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God Bless you and Thank God your hubby's ss went right through, major help maybe, daughter can go back to school now on grants (because of income) rather than your out of pocket. We as patients are never the same as we once were and I know that's hard on our spouses but over time we all get used to our new normal (which gets better after all treatment and healing) I know how tough it was for me to continue to work(when I could) during chemo and all the medical and mental stress) Now a 7 yr Stage 4 NHL survivor, still working and thanking God for all the things I'm getting to see, such as grandaughter 7 getting Baptized (seen her be born after diagnosis) Older grandaughter graduating High School this yr. Celebrated 40 yrs Marriage!

Although very hard I know so important to keep our eye's on what's truly important!!!! I hope this is encouraging you some I know the road is rocky...

 

 

RE: Newly diagnosed and exasperated

by tigerb on Fri Oct 26, 2012 01:46 AM

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I wish you the best.  My husband and I have been married 25 years also.  He was diagnosed with a tumor of the pineal gland in June of this year.  At that time, he could hardly walk, was mentally away for long periods of time, very weak, and we had no idea what our future held.  We also have a daughter in her junior year of college. 

My husband had surgery in July and has just completed a CyberKnife course.  While he has terrible headaches, he is back to work a few hours a week and is trying to increase.  He is a chef.  He is now walking normally without balance issues and he is mentally back.  The other symptoms he had have disappeared.  I know that we are very lucky to be where we are medically and we are hoping to get back to normal when we can find how to control the headaches.  I really feel for you.  Your comments touched me. 

I really thought in June that is was going to be a life changing experience (which it has been), but one that would not improve in time.  We are now in the situation where things are close to returning to normal.  Financially, it has been a struggle but he did qualify for social security and that has been a major help to get us through.  Try to stay positive.  I understand what you are feeling but want to give you encouragement that things may not be as bad as they seem.  I certainly hope for better things to come.  You are in my prayers.

RE: Newly diagnosed and exasperated

by tonybabz on Mon Oct 29, 2012 08:50 PM

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  stacy,i will pray for you and your husband. the lord works in strange ways there is a reason for this. his path is a curved one. i know you and your husband will be stronger because of this.i know this because my wife and i have been closer due to my cancer.God bless.

                                               tony

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