Losing it.......

Good morning - although I haven't posted in a while - I am always reading the posts for support.  Muscle man has had a sudden deterioriation at Day #2 of his 6th round of Temoday.  Fever, falling down and not being able to get up, it hasn't been fun.  In the hospital for 3 days and now discharged home with a cane.  They have stopped the Temodar.  We don't have any idea as to what we are facing.  They wouldn't discuss the MRI with us (also did CT scans) and adjusted his Dilantin level.  The nurse told me we were just doing palliative care at this point.  I am ok with all of this, his cancer is so rare and I know what the reality is.  The problem is that he seems to have two different personalities.  One weak, submissive and the other angry and defiant.  I feel like I am a bouncing ball..........we have a follow up with the oncologist next week and were scheduled to have our regular follow up MRI at downtown MDA with the NO in two weeks.  He wants to talk to the oncologist alone.  Someone just tell me I am going to survive this nightmare - I broke down and took a xanax this morning....

If he wants to stop treatment, I will honor that.  His tumor was inoperable and now spreads through three lobes of his brain.  Hard to believe on Sunday he was running sprints at the track....

Thanks for listening.

gina, c/o muscle man, dx multifocal gliomatois cerebri- dealing with this since Feb. 2009......

Thinking of you, Gina, at this most difficult time. You are amazing!  I am so sorry that you have to deal with this. I can undertand MM's personality swings -- so hard for him to face this.  Can't blame him for being pissed off.  If you are able, take a little bit of time for yourself - -go for a walk. You need it and deserve it.

If you can, stay in touch. We are all here for you on this site.

Warmly,
Holly

Husband, dx GBM IV Feb. '09

Hello Gina,

I am sorry to hear about your husband and everything you are going through, my heart goes out to you. That is not right that they did not discuss the MRI and CT scan results with you. I've learned through our experience and reading the posts of others that the doctors are usually baffled by this cancer and are lost in the maze as we are looking for answers. The brain is so complicated and each patient is different, but that does not help the patients and loved ones fighting this monster.

It sounds like he could be experiencing swelling issues. Is he on Decadron? I'm glad your appointment is next week because there are other treatments available, sometimes the Temodar stops working after a while. We went to MDA and they recommended Avastin and CPT-11 for Jay. There are also medications for the two different personalities he has. I know exactly what you're talking about, I went through this with Jay. He also has the submissive and agressive personalities. I was not prepared for this, I truly understand what you are going through. We have in home hospice so I talked to the nurse about this and we have been trying different medications to see what works best, there are quite a few to help this problem so ask his doctor.

As far as taking care of yourself, don't feel bad if you need to take medications to help you through this, it's beyond difficult. I talked to my doctor and for the first time ever I am on an anti-depressant and xanax and it does help.

Please let me know how things go at the doctor next week. This web site is a wonderful support site. There are a lot of great people here fighting the same battle we are. I'm sure you'll hear from Sarah, she is awesome, I think she answers every post and offers support and info to everyone!

Take care,

Lori

My heart is so sad for you.  The ups and downs of the personality begin to wear on you.  I had just had to learn to remind myself daily that it is the tumor talking not my loved one. 

I know this will be a hard decision.  Prayers for you as the two of you make it.  Sometimes, I think the doctors don't really give us the true picture of how far along a person may be in their cancer. I know there is no way to know exactly when to stop treatments, but it seems like they would help you with realizing it may getting close to the time.  We dealt with that with my dad.  The NO just kept increasing the steroid and said they would see us back in a month.  No firm reports on the MRI.  My mom and I finally made the decision to call Hospice, he died the day they came out for the first visit.  We missed out on some really good support by not knowing when to call them in.  I really wish they would be more upfront.  It would help us when it does come time to make a choice of what to do. 

I know your heart is breaking...God's peace and hugs to you.  And, if the Xanax helped....GOOD!  You may need that little something to help you keep you head clear.

Cris

Gina. Sweetie, I am so sorry. Yes, you will survive. I will too. We might be shattered, and not worth a whole lot for a long time, and let's face it we'll never be the same again after these good people leave our lives, but yes, we will survive. Better days are out there. I think it's really important to know that and say it. I actively visualize my life afterwards.

Sometimes -- and I know a lot of caregivers will understand this although it sounds terrible --  I almost think I'd rather be there than here.... just because Andy's suffering and terror will then be over. It is his fear and pain that I fear and suffer the most. I know that MY pain will be awful when he's gone, but for me to see him on this relatively hopeless journey is sheer hell.

So when and if palliative care is the thing, I say bring it on.  There's Haldol and Klonopin and all kinds of things to help Jay cope... tell his doctors he needs HELP. He must be terrified, feeling like a ticking time bomb, and just have no way to express it calmly! As you may recall, we're also into medical marijuana here. I can't imagine our relatively serene home without it, around the clock. We sing, we laugh, we sort our seeds, etc. I don't use any because I would then be completely useless but we have a letter coming from the doctor so we're safe.

Love and courage all around ~
Sarah

mom of Andy 27 dx gbm/pnet 1/09

p.s. to what I said above... please don't think I want to hasten my baby boy's demise. : (

I am WILLING and ABLE to go through this hell for as long as we can keep him above ground. All I was saying was, at least when this is over, HIS hell will be over, even if our pain and sorrow lasts forever.  None of this sounds good or right so I'm going to stop trying to explain it now!!! : P

Dear Gina,

So sorry for what you and your husband are having to go through.  This is such a horrible disease for everyone involved.  Your words about the two personalities hit home with me: weak and submissive and the other angry and defiant, I deal with that alot with my husband too and never know which one I am going to get.  What a toll this takes on us all!!  Our husbands would never be like this if they could help it, obviously the brain can't handle being tinkered with.  I am coming to terms with that more and more but it has taken me a full year to get here!  Don't be hard on yourself and I agree, the doctors could relieve alot of the stress we are going through by being more up front with us.  I just don't get it.  They hold the knowledge, they are the experts in this, why are they not more helpful with giving us the information we need at the time??  i just find it so frustrating and thought I was the only one dealing with this.

Well, hang in there, what a tough tough road to travel, but you are not alone and I think venting about it is so necessary, healthy and helpful.

Lee

Day three after my father passed.   Day one, I was a complete wreck, day two a little better and better yet on day three.  Not to say I will not have another breakdown but you will survive both the disease and the consequence.

It sounds a lot like my dad but they did a follow up MRI and unfortunately the answer was the tumor was not growing so it had to be underlying conditions.  Change some meds and it never got better.  

What was the right choice for our family was to take my dad to a hospice.  The care they provide to the "resident" and to the family is amazing and will help you through the most difficult phase.   A Friday my dad might ask in a meek voice if he could have another cookie and not 12 hours later and the next day demand I make him normal again and take a swing at me.  That day we had him in a lift and out of his bed three times.   Two days later, I helped him put his feet on the floor, something he had not done for weeks and that seemed to help - he slept like a baby and then four days after that was gone. 

One decision you will have to make is with regards to the steroids.   The catch 22 is that they do decrease the swelling but you may have to go to levels that make the aggressive days and outbursts more pronounced.  They did increase the steroids and although his function improved marginally, he had a tantrum so bad he threw his wedding ring on the floor and swore at my mom at the top of his lungs.   They reduced the steroids and tried various anti-psychotics and anxiety meds but we were lucky to have a doctor tell us the steroids were merely prolonging the inevitable.   A strong muscle man trapped in his own body and frustrated beyond belief - we took him off the steroids and increase the morphine and other meds and we are "lucky" he only lasted about 3-4 days after that.   At a point you will have to make a decision as to what would the patient want and to do so without guilt.

Even on the bad days, there were moments so please commit them to memory as you will need them.  And better to have a nurse either at home or a hospice give the care so that you can spend some quality time being his wife not his caregiver. 

Sarah,

I understand.  Though Andy may not have much pain and he may be sort of removed from what is going on when the time comes.  I was so worried that Fred was going to get very aggressive with me at the end but he didn't.

Drugs do work for the caregivers and for afterwards.

Take care,

Peace,

JMB

On Nov 01, 2009 1:03 PM nicurnc wrote:

Good morning - although I haven't posted in a while - I am always reading the posts for support.  Muscle man has had a sudden deterioriation at Day #2 of his 6th round of Temoday.  Fever, falling down and not being able to get up, it hasn't been fun.  In the hospital for 3 days and now discharged home with a cane.  They have stopped the Temodar.  We don't have any idea as to what we are facing.  They wouldn't discuss the MRI with us (also did CT scans) and adjusted his Dilantin level.  The nurse told me we were just doing palliative care at this point.  I am ok with all of this, his cancer is so rare and I know what the reality is.  The problem is that he seems to have two different personalities.  One weak, submissive and the other angry and defiant.  I feel like I am a bouncing ball..........we have a follow up with the oncologist next week and were scheduled to have our regular follow up MRI at downtown MDA with the NO in two weeks.  He wants to talk to the oncologist alone.  Someone just tell me I am going to survive this nightmare - I broke down and took a xanax this morning....

If he wants to stop treatment, I will honor that.  His tumor was inoperable and now spreads through three lobes of his brain.  Hard to believe on Sunday he was running sprints at the track....

Thanks for listening.

gina, c/o muscle man, dx multifocal gliomatois cerebri- dealing with this since Feb. 2009......

 

 

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