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Old 01-15-2010, 07:03 PM   #1
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Glioblastoma

We've had a wonderful life togeter until Nov 9, 2009 when my husband was dx with glioblastoma & had his surgery Nov 10, 2009. With the surgery, radiation, chemo he now has 6 to 9 mths & 12 if I'm lucky. He seemed to be doing so much better with no headaches, seizures & starting to remember everyone. But now he's starting to have dizzy spells & off balance when he walks. I guess I just need to know what I need to expect or look for in his condition. I pray for him every night hoping he will be one of the lucky ones who will live for a couple of years but I also know what the Dr's have told me. Can anyone give me an idea of what to expect??? Please??

 
Old 01-16-2010, 07:03 AM   #2
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Re: Glioblastoma

Hi bostyn

I am so sorry that your mate is suffering from this cancer. It is difficult to watch someone who holds our heart suffer.

I can share with you the course of events that happened for my dear friend, Mike, who passed from Glioblastoma. Mike also lost his sense of balance and had difficulty walking. He seemed to lose the ability to always recognize some odd things. An example is that if his arm fell into his plate of food, he would not notice that something was amiss. What he lost were physical abilities like that.

He was totally cognizant of his surroundings, though, and never lost his thought processes. He recognized all of us always. He was a very, very tired man and towards the end slept almost comstantly. It seemed that the fatique was his greatest complaint.

Mike knew that he was fading. I think one of the most important things for him was to be allowed to spaek about it when he chose. It gave him the freedom to let those he cared about hear how he felt. Actually, he even planned details about songs and such that he wanted at his passing. I believe he had come to terms and was at peace at what the outcome would be.

His wife, a nurse, was also fully aware of what was happening to him. They would spend time looking at family pictures and his wife would talk to him about happy memories. It was good for both of them and helped his wife as much as Mike. She also would take Mike for walks in his wheelchair. She even took him on a cruise just for him to have something interesting. He slept through most of the cruise, but it did llift his spirits.

Oh, this is so sad. I wish these were not the words to pass on to you. I have been part of the passings of loved ones to cancer. It can wrench our souls. However, take comfort that your husband continues to feel your love for him. It is obvious you are a wonderful and caring wife and I know you always have been. Give thanks for the marriage and the love that was created and continue the prayers. My prayers will be for peace for both of you during this time.

reach

 
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Old 01-16-2010, 09:03 PM   #3
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Re: Glioblastoma

Reachout

Thank you for your story. I know his weakness is a sign of this illness because this is a man who has never been sick a day in his life. He has always been a worker! From sun up to sun down. I wish I had a crystal ball & could tell how long he will have to suffer with this awful tumor.

His tumor is located where his speech & comprehension take place. So I don't believe he realizes that his time is limited and I sure don't have the heart to tell him he's dying. I let him believe he has a 50/50 chance of the radiation & chemo getting rid of the tumor. I believe this will keep him from giving up on life. I want him to live as long as possible.

I even let him go everyday after his radiation to his brothers shop in town & help with oil changes. His brother brings him home & he feels like he has helped his brother out. I will let him get everyday until he can no longer. Today he almost went down 3 times so I know it's coming soon where he wont be able to get around.

Your friend Mike he had to be a lucky man to have a nurse as a wife. I'm sure she took wonderful care of him. Sometimes I feel like a nurse but I have a long way to go until I understand about this tumor!

Thanks again!!

 
Old 01-17-2010, 06:42 AM   #4
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Re: Glioblastoma

Hi Bostyn

How are you today? I hope it is a sunny, bright day where you are and that your spirits are good.

It was so nice to read that Hubby is going to his brother's shop after radiation treatments! That is great. I am a cancer survivor and for me anytime I could get out of the house and do a little something meant so much to me. Every month I would need to spend 5 full days in the hospital getting chemo. I can not tell you how much I hated that. I felt trapped and it always just reinforced in me how sick I was. Then for the next 7-10 days I would have to go to the oncologist's office and get a shot of nupogen to raise my white blood cell count. On those days, Hubby would always bring me to a store of some kind to look around. A lot of times we would go to a home depot and buy a flower in a pot. I couldn't be outside in the sun because Of some of the meds I was taking. So he would hang those pots all over the porch and garage so I could look out the window and feel like I was outside. It is a beautiful memory for me. Smiles.

The fact that your Hubby goes to the shop makes such a good impact on his life. I know it gives him a sense of usefulness in his life. That is so important to cancer patients to have something to look forward to each day.

Hey, Bostyn? I hope you are remembering yourself in all of this. I have been both a patient and a caregiver. As a caregiver, we can become so consumed with all the issues that we forget to tend to ourselves. Use the time Hubby is at the shop to somehow pamper yourself a bit. A nap, a haircut, a visit with a friend. It is a road that is just as hard on the caregiver as the patient and both need care. If friends offer to cook a meal or clean or do shoppng, take advantage of it. Be kind to yourself also during this time.

We will talk again.
reach

 
Old 01-18-2010, 06:48 AM   #5
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Re: Glioblastoma

Reachout,

Good morning! It foggy here now but per the weatherman should be sunny & around 55 today.

You give such encouragement you being a survior & a caregiver of cancer!! I can't even begin to imagine how you must feel. I know as a caregiver I have to have lots of patience. My husbands tumor has interfered with his speech. He knows what he wants to say but says something totally off the wall! It's almost like sharades everyday. I was never good at that! He gets mad at me & but he forgets within 2 min & moves on to something else. His comprehension is also affected. I have to repeat everything at least serveral times & sometimes I just give up on trying to tell him something & then he gets frustrated. It's just a vicious circle!!!

We're hanging in there. I have learned so far to just take it day by day. I sure hope he doesn't have to have those shots you were talking about! He's definately not a good patient when it comes to shots!! It sounds like you are doing OK at this point. Are you cancer free now?? How long has it been if you are??

Hope you have a wonderful day! Back to all the paperwork I have for him!

Bostyn

 
Old 01-18-2010, 07:34 AM   #6
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Re: Glioblastoma

Hi Bostyn

You made me chuckle, girl, with the remark about charades. Hahahahaa! While the cancer itself did not affect my brain, the chemo sure did. I had what I called chemo brain. The head would get so foggy and sometimes I knew I was just staring at people when they were speaking to me. I could hear them, but the words would not compute. It was like time stood still sometimes. I know the people around me sure had to have a lot of patience dealing with that! Sometimes my husband would call my name sharply and wave his hand. That would usually snap me back.

Hey! I just noticed today you are in Arkansas! A state dear to my heart for sure. My Dad was born in Marked Tree, a little bend in the road place. His family were all farmers at that time. Cotton and soybean. Some of the faily is now in Brickeys ( not much more than a bend in the road!). It is about an hour from Marietta. He also has relatives up in the hills who are chicken farmers. I haven't been to Arkansas for many years, but stay in touch from time to time with the cousins.

Bostyn, I am cancer free for 14 years now! Can you imagine? This past November, I attended a cancer survivor breakfast with my Mom, who is 15 years clean of beast cancer. Lord, I saw so many people there from my school days. Cancer just doesn't have any boundaries, does it? Bah! We had a wonderful time, though. There were 500+ survivors in that room. The longest survivor had 40 something years behind her! Swiis Army gave each of us a special watch and a local produce farmer sponsered all the food. It is held each year, but I only go sometimes so as to give others a chance to participate. It is always a very spiritual and emotional time.

Day by day... yep. that is the way we must deal with cancer either as patient or caregiver. And the chuckles now and then sure are vital. I learned along the way to use humor to survive. One of my surgeries involved deep cutting from my chest to my knee. Muscle was flipped down into my leg to save it. (my own cancer was a sarcoma in my left thigh). After a while I used to joke that every morning I would flip a coin to decide whether to put my bra on my boobs or on my knee. It took away some of the control of the cancer to be able to laugh at it sometimes.

Okay now... hope the fog lifts and the sun shines bright on you today. Stay in touch.

Hugs
reach

 
Old 01-19-2010, 01:57 AM   #7
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Re: Glioblastoma

Good early morning reach!

It's around 3:30 am here. My husband woke me up with a severe headache! I gave him a pain pill & praying he can go back to sleep. I told him I would be on the couch if he needed anything else. So here I am unable to sleep. The hardest thing is seeing a grown man breakdown! For him to hurt like that the pain has to be excruciating!! I can only imagine what he is going through! He is regressing back with his speech which makes him even more frustrated. Tonight was easy he was rubbing the back of his head!

The survivor dinner sounds wonderful! It would be awesome to see so many people who beat this deadly disease!! I'm so happy to hear your doing well & that your mother has also beaten this!! If you don't mind me asking what kind of cancer did your mother have & for how long?? It really doesn't matter your both an inspiration!

Yes I live in Mtn Home, Arkansas which is only a couple of hours away from Mark Tree. We go through there when we go to Memphis. They call Mtn Home little Chicago because everyone retires down here from IL. I have to say it is a beautiful area to live & visit. We have Norfork Lake, Bull Shoals lake, White River, Buffalo River & Norfork River. We are surrounded by beautiful waterways! I absolutely love our lakes & rivers!

For weekend getaways we use to go to Branson, Missouri which is only about a hour & a half away! We would go see a country show like the Oak Ridge Boys, Micky Gilley, Andy Williams etc. There is so much shopping & things to do in Branson! A weeks vacation you still couldn't see all the shows they have!

I guess I'll try to lay back down now. I haven't heard stirring around in there so maybe he did fall back to sleep. See if I can get alittle more rest.

Thanks for the hug too!!
bostyn

 
Old 01-24-2010, 08:32 AM   #8
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Re: Glioblastoma

Hi Bostyn

Sorry it has taken so long to post again. I was caught up in some stuff here at home and didn't get online as much as usual.

Hey, I think you are the only person I know outside my family who knows Marked Tree! Chuckles. Arkansas sure is beautiful. It has it all.. the plains, the mountains, all the lakes and rivers. We also have relatives in the Memphis, TN area and right over the border in Mississippi( I still get a kick spelling Mississippi and singing the little jingle in my head as I do).

My mom had breast cancer and is a 15 year survivor; I had a cancer called liposarcoma in my thigh and am a 14 year survivor. It feels good to say the word survivor, but it makes me no less sorry for those suffering from it now. I know it all turned my whole family topsy-turvy and all it involves can be so overwhelming for everyone. It's like a brick wall falling on the head and we have to work our way out slowly, slowly, slowly. It is a life-changing event for sure for patient and caregiver alike.

How is Hubby this week? Is he continuing to remain active? Does he have an appetite? For a long time, all I wanted to eat was watermelon. Good thing it was available!

And how are you holding up? Are you remembering to take some time out from this? It is really important to do so.

In thinking about the speech issues... maybe a pad and pencil can help when the speech is really garbly. It might help Hubby to feel like he has a bit of control. I know for me, the lack of control in my own life was a big frustration for me. I couldn't walk for a while after the surgeries and had to lay in bed for what seemed like forever. Very frustrating dealing with limitations.

Well, Bostyn, I will say adios for now. I will stay in touch, though, and hope you do the same.

Hugs
reach

 
Old 01-26-2010, 07:24 PM   #9
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Re: Glioblastoma

Hello Reach,

I haven't been on much this week either. This has been a very rough week for us. He had his last radiation treatment today but will continue on his chemo pills for another 10 days (I think). He lost his appetite completely & when they weighed him today he lost 10 lbs in one week. This really scares me! I did call his Onocologist & got a prescription of Megace to help his appetite. But tonight he is complaining of his left side hurting around his rib area. I pray it's not pneumona. He went to bed at 8:00! He never goes to bed before 9:30 or later. I watch him everyday get weaker & weaker. I'm not sure what else to do.

You know we actually did try giving him a pen & paper so he could write down what he's thinking but he just sits there & doesnt know what to do....so I continue to play charades with him everyday!!!! He continues to get frustrated & take it out on me but I know he's definately not in his right mind. I threatened him the other day that he needed to find someone else to take care of him if he continued to raise his voice at me! I know I probably shouldn't have said that but he get very biligerant!!! But the next minute he may be crying asking if he's dying!! He's definately stressing me!!!!

I pray for strength everyday!!!!! God must think I'm pretty stong to put up with him!!!

I really admire you & your mother for being survivors!!! That is awesome!! I'm sure you both had your ups & downs! I can only imagine what you both went through.

Do you worry that cancer will return?? Looks like that would be a fear for the rest of your life. I guess you just learn to live it. Well it's time for me to wake him & give him his chemo for the night.

I still think it's funny your from Mark Tree, Arkansas!!!!LOL

Hugs
Bostyn

 
Old 01-27-2010, 06:29 PM   #10
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Re: Glioblastoma

Hi Bostyn

Sorry to hear about the rough week. It all gets so trying sometimes. It can wear on the patience of a saint. I can remember times when I was caring for my parents when I was so worn down I could hardly put one foot in front of another. I had just begun college at age 43 when my parents and uncle were all diagnosed. I was working full time, going to classes at night and taking them for treatments and caring for their house inbetween. School was the first to go. I had to leave 1/2 way through the semester. I was taking a math class and an English class. My professors were so wonderful. They let me work at home. I came in and took the tests with a proctor watching when I could get there. My English professor was so unbelievably nice. A few weeks after I left school and was just sending the work in, he called me at home and said, "Enough work. You are getting an A. Take care of your family and I will see you again some day." How great was that??? Then I finally took a leave of absence from work.

My mind was so addled with everything that I was losing my concentration. I was driving home from work one day and pulled right in front of a screaming fire engine. It was by the grace of God the engine swerved and an accident was avoided. I pulled over to the side of the road and just sobbed. That night I called the building principal and told her I just needed time out to care for my parents. She was great and arranged the leave for me.

Don't ever feel guilty for an occasional short temper or for feeling a bit too weary to do something. We are only human, Friend, and need time out from the patient.

Bostyn? Gently I want to ask you if you have been in touch with Hospice at all or have any of the doctors suggested it? It is a wonderful group and they docomeinto the home to help with the patient. They will bathe him and such when the time might come. Also, they are a great support to the caregiver. Something to think about anyway.

The loss of appetite... chemo sure did that to me. For my Dad, he just lost his appetite as time went on and he wasn't receiving treatment of any kind then. Funny thing.. all he wanted was 2 slices of Genoa salami and 1 slice of swiss cheese every night. Not sure why... maybe he was craving salt. I would stop at a deli every night and get those slices for him fresh. Sometimes the owner didn't even charge me. He knew what it was for. And that was the total of what my Pop would eat each day in the last weeks.

For me, the chemo killed my taste buds after the second treatment. That was really upsettting to me. When food has no taste, it all becomes like a wad of raw fat in the mouth. Sure killed my appetite. I lost a lot of weight... probably 35-40 pounds during treatment. I was heavy to begin with, though, so it wasn't a stressor on my body.

Ah, Bostyn, the whole thing stinks. Cancer sure is one of the less pleasant things of this world. I am sorry you folks are going through this. I will continue to pray for peace for both of you.

Manana
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Old 02-02-2010, 12:57 PM   #11
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Re: Glioblastoma

Hey Arkansas Gal

Thinking of you and understanding it must be a rough week. Take care of yourself and prayers that Hubby is holding his own.

Love ya
reach

 
Old 02-02-2010, 08:26 PM   #12
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Re: Glioblastoma

Hey Reach!

Sorry it's been so long but has been quite rough around here. His radiation has ended & so has the chemo for 4 weeks he gets a break in treatment. I finally got ahold of his Dr & requested a prescription of Megace to help with his appetite & it seems to be working. I'm so glad he's back to eating again!! I feel like if he eats he won't be so weak. He still falls down at least once a day. I try to make sure he doesn't hit his head because I can't afford to have him hemorrage. His legs just buckle right out from under him & down he goes.
Thank goodness it's always happened at home & not in town.

My Aunt & I were tag teaming taking care of my grandmother before my husband became ill. Now my Aunt has to care for my gma 24/7. I kinda feel guilty but she has gma & I have my husband. We have to have everything out of her apt next Saturday. We are going to move her in with my Aunt since she doesn't know where she's at most of the time. My Aunt being an RN has really given me good advice on kinda what to expect. With gma living with my Aunt it will make it easier for me to visit her at least once a week. My Aunt lives about 3 miles from my home.

I know this may sound selfish but I can't wait for my life to be normal again! I actually want to get up & go to work everyday!! And only worry about hating Mondays & working for the weekends!!!! I really miss not having a job! I've worked since I was 18. I'm sure most people would love to be off but I'm going crazy!!! I never know what day of the week it is or even the date sometimes I have to look at the calender!

Hey did you see Dave Pittman on American Idol he's from Mtn Home & he made it to Hollywood! I seen part of it but missed most of the show. Everyone around here is talking about it. Kinda funny someone from our small town on TV.

Well I better quit complaining & go finish laundry while he sleeping. I'll try to check the message board more often.

Love,
Bostyn

 
Old 02-04-2010, 06:10 AM   #13
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Re: Glioblastoma

Hi Bostyn

Sure was good to hear from you.

I am sorry about these tough times with Hubby. My Pop's lung cancer had metastisized to the brain and he, too, had episodes of falling down. This is what eventually led to brain surgery to try and reduce the pressure in the brain from the masses that had developed there. Sadly, the surgery left him paralyzed on the whole left side. In hindsight, I wish I had never agreed to the brain surgery. It did not prolong his life and left him bedridden. Sigh. He used to tell me that his legs just wouldn't cooperate with what he wanted them to do. Must be a horrible feeling.

Honey, it is so not selfish in a bad way to want to go back to work and have life normal again. When we can work, we have a sense of accomplishment. As care-givers in your situation, there isn't a feeling of accomplishment as much as a feeling of helplessness. No matter what we do in your situation, results are not good. All we can do is love and care for without much in return. It is okay to feel this way.

Hey.. I don't watch Idol, but I will have to tune in to see this Arkansas Man! I am going to look him up on line and take a peek at him. Go, Pittman! Chuckles.

We have the baby girl today and tomorrow. That is going to wipe me out for sure! I will try to write again as soon as I can. In the meantime, know that my thoughts and prayers are with you.

Hugs
reach

 
Old 02-06-2010, 10:42 AM   #14
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Re: Glioblastoma

Hi

Taking care of a Hubby sick with the flu. He has been getting better and then worse again for 2 weeks now. I thought of you as I was tending to him and feeling a bit ragged with the extra work. What I thought was a real dose of reality when I realized how long and hard each of your days are in your situation.

I know you are very busy, so please don't worry about posting. Just know I am still here caring about you and all that is going on in your life.

Hugs
reach

 
Old 02-07-2010, 08:27 AM   #15
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Re: Glioblastoma

Hi Reach!

Things around here change day to day but he's still about the same. The only changes I notice are his speech & wants to sleep alot more during the day. I guess this is to be expected.

I sure hope your husband starts getting better. I know exactley how you feel! One day we're doing good & then wham he's not so good. I try to just roll with the punches as they say! I think of you often how you, your mother & with an ill husband how you handle everything going on in your life??? You must be a very strong woman!!! There are days when I'm strong but there are nights when he's sleeping I'm not so strong!

Next weekend my family & I will be cleaning out my gma's apartment. That's another whole ball game. I stopped & seen here Wed. & she actually knew who I was but yet she wanted me to look out the window at the man in the tree who she believed had been there all day! Go figure! Half here & half not here! I told her he must be trimming the limbs incase we have another ice storm & she went with it!

How was have the little girl around?? Did she wear you out? We had our little granddaughters birthday party last night. I had forgotten how hyper they can be at that age!! And a houseful of them from ages 3 to 6!! Thanks God mine are grown! Love em & leave!

Well take care & I'll talk to ya later!
Hugs
bostyn

 
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