It's back.

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RE: It's back.

by jon4156 on Fri May 09, 2014 01:53 PM

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Hi Jan,

Yes, my wife has most of her mental faculties and all of her senses.  Short term memory is very bad now but long term memory continues to be completely accurate.  Confusion in terms of day of week, day of month, time of day, etc continues to be a big problem as well.  She needs constant direction and reiteration of instructions to perform basic tasks.

Jon

RE: It's back.

by jon4156 on Fri May 09, 2014 03:07 PM

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Update...

My wife remains wheelchair bound for the most part however we are seeing some slight improvments including more leg and arm movement.  Not nearly enough to allow walking but at least she can lift her left hand up onto the table now.  Doesn't sound like much but we take the little we are given as a victory.

Even better, she is able to transfer herself from bed to wheelchair, and wheelchair to bed, by herself.  She still needs help getting her feet up into the bed and getting into a sitting position from a prone one, but we no longer have to pick her up and support her during the actual transfer.  This is a BIG deal!  Yea!!!

She is definitely getting stronger which hopefully will clear her forAvastin should that time come.  She is currently on the 5/23 cycle Temodar which started rather late at just over six weeks due to her dealing with the pulmonary embolism and general physical weakness.  A baseline MRI was performed just before starting Temodar which identified three new spots of activity, one in a new area, two in the area that was just resected this past March.  That was bad news but we simply keep looking ahead and continue the fight.  I have seen improvement in her physically since starting the temodar so even though the new tumor was non-methylated I am hopeful that the chemo is working.

Many of the weights on my back have begun to slide off as we slowly work through our list of hurdles.  We have gained significant independence (like night and day) after building a 90 foot wheelchair ramp and trading in one of our vehicles for a Toyota Seneca with a factory installed disability seat.  It's called Auto-Access Mobility and the seat is powered to turn, exit out the side door, and drop down to the ground to provide easy access in and out of the vehicle. I chose this option because my wife finds the wheelchair extremely uncomfortable so a conventional wheelchair capable van was not really an option.  The Toyota auto-access mobility seat is a nice comfy captain's seat just like the rest of the seats in the vehicle.  I cannot tell you what a difference the ramp and vehicle have made for us.  Now, we leave the house whenever we want, without help.   THANK YOU TOYOTA!!

On May 1 we transfered her medical insurance to Medicare.  We opted for a Plan-N supplemental policy and found USAA to have the cheapest premium.  We chose CIGNA for prescription Part-D which carries a high premium ($116/month) but has the lowest overall yearly costs based upon her prescription drug requirements because the policy covers the Part-D "donut-hole".  This is a huge load off my shoulders because now her medical care is not dependent upon my employment. If something happens to my job I don't have to worry about her losing insurance or having to pay $2000/month in COBRA premiums.

So weird, even with all she faces we are still able to find victories, small seemingly insignificant rays of hope to make us smile.  I guess it doesn't take much when your world has crashed in on top of you.  I can't even remember life before brain cancer now.

RE: It's back.

by jon4156 on Fri May 09, 2014 03:09 PM

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Link to video showing Toyota Seneca mobility seat

https://www.youtube.com/watch?v=XgS4JXB_2uA

RE: It's back.

by vwxyz on Fri May 09, 2014 03:43 PM

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Good job, both of you.  Everything takes time to strengthen and heal with patience. 

Jeff has his days where he seems to be slower than usual, desires to sleep more than eat or drink, and short term memory is effected because of it.   Falling scares the life out of him. It is then he does not want to leave the bed and is stiff as a rod trying to get him up.   This falling is very real.  We know it will happen when we least expect it, so we are ready.  I do not ever want him to give up because of something bad happening.  It is my hope he can develop self esteem, confidence, and dignity in what he can do for himself, get a consistent schedule going to get him out enough so he feels like part of the world, and we can go on a vacation to Florida. Waking up to the sound of the ocean waves, the consistent warmth, and friends nearby will do him a world of good.   It might get him back on track instead of every day running into each other.  I am trying to stay positive but it is hard for me to see when he backtracks at times during the week.   It all takes time and a prepared team of caring people.   

RE: It's back.

by amorris on Fri May 09, 2014 05:41 PM

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Keep the victories going  My heart hurts for you andyou wife.  We have been luck now on second tumor .  He never hd a stoke although a pretty large brainbleed in beginning...  He went through a series of congnitive thereapy where  she did repiticious things and games for short term memory... He is good...  Heart affcted by chemo and 20%  and osxygen. No energy but he goes Most of the tie with me but not always very tired and oxygen 24/7...  Your wife has made stride and keep it going... OUr jurney started in 2010. He is 77 gave him 14 months and still here today... God's Blessings to you Jon

RE: It's back.

by Shereeclint on Fri May 09, 2014 09:09 PM

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Dear Jon,

It has been some time since we last corresponded through this thread; however I have been painfully aware of the struggles that ensue when, as you so aptly told us, “IT’S BACK”. Or maybe it never left, it just took time to reorganize, regroup, and regain its footing for another assault. This battle is far bigger than any of us. It is, unfortunately, our bubonic plague, our black death, our influenza pandemic; however it just does its nastiness as a lone sniper, one by one.

 The wife of a very humble hospice Chaplin, who is herself a cancer survivor of 15 years and a dear lover of GOD, recently penned a letter to my brother, the one who brought me to this site last fall and who is in his battle with cancer as I write this note. In it, she made the following pronouncement:

“…………... Do we worry about it returning and raising its ugly head? Sure, after all, it will always be our silent companion. But, I am convinced that half of us live as survivors and the other half of the population is just waiting to be diagnosed. This is the disease of our time…….”

The last statement is most telling. All of us reading and participating in this site will die. “For the wages of sin is death” gives some of us insight as to the why. For others it is just fate and a cruel fate at that. I pity those who seem so cavalier and resigned to this fate, while they probably pity me for hanging on to every word of He who said “I am the resurrection and the life, for whoever believes in me will live, even though they die”. John 11:25.

Yes, we will all die, just as Jesus told us in that statement. You are actively involved with one who is battling to stave off, is only for a short time, that eventuality. However, death, be it sooner or later, is not to be feared or pitied, for Jesus’ resurrection changed everything. Without it, death would win every time and to fight would be meaningless and futile.

You are both in my prayers and that prayer goes like this.

Our Father, HOLY is your name. I come before you today in weakness, humble and afraid. This frightening cancer plagues our time and destroys lives, relationships, and families. We who know those afflicted feel powerless before this enemy and seek your healing power, for all healing comes from You. Please have mercy on Jon and his wife who are both suffering mightily. You have told us that our bodies, which were sown in weakness, will be raised up in power; sown perishable, they will be raised imperishable; sown in dishonor, they will be raised in glory. Death has been defeated by Our Lord Jesus Christ. Please comfort these, your children, for their trust is being tested, their beliefs attacked, and their hopes dashed upon the rocks of doubt. We need you GOD, so please hear my prayer. In the name of Jesus, through whom our eternal life is assured, I pray. Amen

Clint

RE: It's back.

by amorris on Sat May 10, 2014 01:40 AM

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What a lovely thing to share with alll.. Gods blesssings to you! Is Jon wife have a GLioblastonoma Multiforme Stage IV..  My husband God love have has a goal everyday thinking when he can stary again to at least putts about the house... Our time on earth is a gift of God and soon for all who beleive will have enternal life. Audrey

RE: It's back.

by jon4156 on Mon May 12, 2014 09:22 PM

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Well today's doctor visit did not go as well as we hoped. My wife had a CT scan for the liver lesion that was found a month ago when she had a pulmonary embolism. Today's scan determined THAT lesion was nothing, but it also found a new large lesion (about a third of the liver) that is not on the surface but interior of the liver and is very suspicious. She'll need a biopsy, probably in a week or so. Chemo for the brain tumor will continue this week. 

RE: It's back.

by amorris on Mon May 12, 2014 09:28 PM

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Jon was liver problem their before Brain Tumor?  They told us now I mean told us that his Brain tumor(Glioblastoma Multiforrm Stage IV) would not spread any further,   I'm just interested.... I keep questiioning these things..  I also quesitonsed if cancers are caused by virisus and was told some are, bu not my husbands brain tumor... I wish a miracle drug.

RE: It's back.

by amorris on Mon May 12, 2014 09:30 PM

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Jon How do you handle  the emotional part.. Sometimes my husband just comes out angry... and he has been a very suttle man all hislife.  I have paxil to start on but know it will take a couple of weeks to see if work for me... Yikes

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