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RONDARC's Photo RONDARC SparkPoints: (202,415)
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10/28/08 7:19 P

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Yes, that's very promising!! I'm glad to hear his twin is going to get checked, that's important not only for the twin, but for Jeff. Set his mind at ease.

~~ Ronda~~

If you make up your mind to be happy there's no reason why you shouldn't have a fairly good time.

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TREE1988's Photo TREE1988 Posts: 1,269
10/28/08 7:07 P

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My friends found some articles that actually said the radiation/temodar chemo treatment his doctor suggested is the best for his kind of tumor so far. It's no guarantee, but at least it's more promising. His big fear was that his identical twin would get it, too, so the twin has agreed to get checked. The other siblings see no need to also get checked (eventhough the doctor had suggested it).

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RONDARC's Photo RONDARC SparkPoints: (202,415)
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10/28/08 6:25 P

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Sorry about your stress, wish there was something I could do.

My doctor gave me a choice between radiation and the chemo pill because they couldn't get all the tumor. He said there was very little side effects, if any of taking the pill and actually tried to push me in that direction, reassuringly, but since I couldn't find any studies on it, I opted for the radiation.

Scary time for all of you, but you'll make it through this hurdle and it'll be behind you in no time.

Barb, I never thought of that before. It would be something you are always thinking/worrying about.

Hugs to everyone and when you're feeling extremely stressed, close your eyes and try to take a few big slow deep breathes. It helps me.
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~~ Ronda~~

If you make up your mind to be happy there's no reason why you shouldn't have a fairly good time.

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BARBGEO's Photo BARBGEO Posts: 784
10/28/08 9:55 A

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Bless his heart... and all of you. It must be scary--a twin too... he must be feeling a bit like 'when will it hit me'? I know my kids feel that way--my husband had leukimia when the boys were little and they have a BIG cancer fear... (they are my step kids but we are VERY close).

Wishing you a Less-Stress Day.

Hugs,
Barb G



All the best,
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TREE1988's Photo TREE1988 Posts: 1,269
10/28/08 12:25 A

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The stress level is pretty high with me and his twin as both of us realize what is going on. Jeff is more worried about not being himself than worried about the possibilities the tumor presents. The rest of his family is in denial - actually thinking the surgery was a "cure" when it only removed part of one tumor and the second one is inoperable.

He will go in for radiation as well as a pill form of chemo that is supposed to be one of the best for Glios.

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BARBGEO's Photo BARBGEO Posts: 784
10/27/08 12:41 P

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Hey there everyone~

I have been 'out of it' the last couple of days (flu or food poisoning--which ever it stinks!)...

I totally agree with CARICAT, looking things up online is an advantage to us--but doctors don't like it a lot of the time (they feel second guessed, I am sure). You need to get the real scoop, and the websites put forth are great resources... You must do what is best for you and for him!

How are you doing? Your stress level has to be way up. Hope you are getting some time to work out or just get away from stuff...

Hugs to all!
Barb

All the best,
Barb G


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CARICAT_'s Photo CARICAT_ Posts: 261
10/25/08 2:53 P

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Hello.... very sorry to hear this about your BF and Dad...

I believe in honesty - even when it's tramatic as it is in your case. You can't mentally cope with stuff as well if you're not prepared for all possibilities to begin with.

I believe your nurse did you a dis-service by telling you not to look up information. Yes, there is a lot of misinformation out there on Brain tumors in general, but that is why you need to choose reputable websites, like the American or Canadian Brain Tumour Foundations. Another thing is not to go by what just one site, but pick at least 3 and make sure they agree.

Glioblastoma's are a very dangerous form of Brain tumour, one of the deadliest. They tend to strike men more often than women.

Brain tumors in general can cause the problems you describe him as having... trouble controlling emotions and thoughts are common. (I have huge difficulties with emotional control at times as a result of my tumor)

do you know what treatment they are doing as well as the surgery?

CariCat

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RONDARC's Photo RONDARC SparkPoints: (202,415)
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10/24/08 6:44 P

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After I came home from my surgery (I was an emergency surgery too, but not as bad as Jeff's)I found a few brain tumor websites that I still do research on. Here are the links.

www.tbts.org/index.asp

www.braintumor.org/home/

www.abta.org/

I found all three of these sites to be very helpful to me. I hope it helps the two of you too.
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~~ Ronda~~

If you make up your mind to be happy there's no reason why you shouldn't have a fairly good time.

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TREE1988's Photo TREE1988 Posts: 1,269
10/24/08 6:10 P

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Hey, guys - Still not results from the tests. They THINK though, that Jeff has a glioblastoma. The nurse told us not to go home and look it up because a lot of information on the Internet is wrong.

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RONDARC's Photo RONDARC SparkPoints: (202,415)
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10/23/08 8:45 P

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Barb, isn't that the truth about our babies. I have one dog and she knows when I'm having a bad time or stressed about something stupid. She'll start "talking" to me and won't quite until I play with her, helps me take my mind off of whatever. emoticon

~~ Ronda~~

If you make up your mind to be happy there's no reason why you shouldn't have a fairly good time.

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BARBGEO's Photo BARBGEO Posts: 784
10/23/08 8:26 P

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hahaha! We had a 'free range' parakeet when I was a kid... Bird was cramped into a tiny little cage, so when we got it we left it out. She loved it! My bird is caged, as she bites when scared. She is better though. I adore her. She talks up a storm!

I have found that my critters keep me grounded. They know when I have a bad day. The dogs most of all--we have three.

Best of luck tomorrow!

Hugs!
Barb

All the best,
Barb G


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10/23/08 7:40 P

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Hi, welcome to the team. emoticon

Sorry to hear about what you have gone through and what you and your BF are going through right now.
Yes, brain injuries are complicated and scary. I know it's hard, but try to have patience for him, his world just fell apart and it's hard to see that light at the end of the tunnel. The not knowing what the next step is going to be is awful. Once he gets his diagnosis he can start putting things in order, that should help a lot. Please let us know what his dr says.
I have heard in the past that steroids make you angry, so he should get better once he's off those.

By the way, you have cute fur/feather-babies.

emoticon

~~ Ronda~~

If you make up your mind to be happy there's no reason why you shouldn't have a fairly good time.

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TREE1988's Photo TREE1988 Posts: 1,269
10/23/08 5:59 P

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Hi, Barb - Thanks for the welcome and email.

The furry kids are Pomeranians, and the feathered one is a Pearl Cockatiel. "The Girls" are a tight knit group and hang out together all day. Beaker is a free range bird - she doesn't stay in a cage and usually just sits on top of her cage, on the dog gate, or on the stairway during the day. At night, she sits on us. She was so upset while Jeff was in the hospital because she likes to scratch her head against his whiskers at night.

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BARBGEO's Photo BARBGEO Posts: 784
10/23/08 5:40 P

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Hey there! Welcome to the group! I am glad you found us! Sorry your boyfriend has gone through this... Brain issues are a MESS. Very confusing!

Glad to hear you have found out your thyroid issues...

Your critters are gorgeous. What type of a bird is that? I have an umbrella cockatoo named Gabby along with all my other bud's.

Hope this finds you well!
Barb

All the best,
Barb G


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TREE1988's Photo TREE1988 Posts: 1,269
10/23/08 4:16 P

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My boyfriend of 15 years has not been himself for a while. It was very frustrating - like living with a stranger. I thought it was because he wasn't eating (he had been diagnosed pre-diabetic and gone on a diet). Well, about a month and a half ago, he said he started not feeling like himself. He was having anxiety attacks, and he thought it was just because he hated his new job. I started watching him when he had them, and they didn't look like any panic attack I had ever seen. I started taking his blood pressure and pulse, too, and it just wasn't normal (105/50 bp and 45 pulse during a panic attack?). Anyway, I forced him to go back to his dr and told him all the symptoms I was seeing with the confusion, dizzyness, physical stuff. His dr said it sounded more like seizures than anxiety and referred us to a neurologist. The neurologist didn't think it was epilepsy, but wasn't sure if the cause was anxiety. I had him order an MRI and EEG anyway. On Monday of last week, we did the MRI and were scheduled for the EEG. On Wednesday morning, though, before we got any MRI results, we ended up in the ER because Jeff woke up with a severe headache - bolted him right out of bed. I ran every red light to the hospital as there was no time to wait for an ambulance. When we got him pain meds (I don't know what it was, but it was 10 times stronger than morphine and they had to give it to him twice), they FINALLY read his MRI and found that he had 2 brain tumors. They did a CAT scan and found out that the larger one had started bleeding (hence the pain). They transferred us to a hospital farther away where the Kaiser Neurology center was and did emergency surgery at 3pm. They were only able to remove part of the larger tumor (and the smaller one they can't operate on at all). The large tumor was pressing on his memories, language skills, emotions, and some motor skills. He is fine with his motor skills and his memories seem to be fine. He has some words missing, but the big part is his emotions. His hating his job and being so depressed over that was part of this, but it has continued. Now he's got the added stress of this, and is weepy and clings to me constantly. He is afraid if I leave him, I will not show back up. He was so out of his head at nights, I'm surprised they let him come home the day before yesterday (yes, less than a week after having a large egg sized part of his brain removed). At night, he gets really bad with everything from he would be better off dead, to we would be better off without him, to he thinks he's dying, to we're trying to kill him. He has delusions still, too. The original plan was for him to stay at his mother's house for a few days, but the first night she wanted me to take him home with me because she said it was more familiar. He stayed with her one night, then was home again last night. I think it was because she was scared to be with him at night. I was the one sleeping/staying up all night at the hospital every night with him this whole week, but he gets so aggitated if I'm not there. I told her I would stay at her house, but I think she was afraid to see him how the nurses and I described him at night. He's still very depressed during the day and she irritates him pretty bad. His sister is staying with them during the day some. He may get his diagnosis tomorrow. I think that is also part of the problem. We don't KNOW anything. Today he is alternating from sad to mad. In fact, his mom took him this morning and brought him back before I could even get ready for work! He feels useless, still doesn't feel like himself, etc.. Have any of you felt this way after surgery? How long did it take you to feel like yourself? Will it be better after he's off the steroids? He keeps saying that he's been useless to me the last 15 years and how bad he's been to me, etc.. He also keeps saying I need to go back to GA to take care of my mom, but then he's scared I will leave. He can't control his thoughts, can't listen to two things at once (like TV and a conversation), etc.. I keep telling him that HE is my top priority right now, but due to what we had discussed before, he doesn't think I should be.

I don't know if I can take this. This has been the worst year. One of my friends passed away before Thanksgiving, then one of my best friends who was like a brother to me died in December, my dad (who has been ill for years with heart issues and Alzheimers) took a turn for the worst and I had to stay in GA most of the time with my parents, then in April while I was finally home, my favorite great aunt who was my best friend died, then in May my dad got sick again and died. Now THIS! I had been talking about moving back to GA to be with my handicapped mom since my sister is in TN and I'm in CA. I don't have kids and family to uproot, so it made more sense for me to go there. Now, my boyfriend keeps having hallucinations about that and it makes me feel so guilty because it's really stressing him out that I would leave him - especially now. I just don't know what to do because I feel like I have to be strong for EVERYBODY and I was already running on my last nerve after my daddy died (I'm the biggest daddy's girl you've ever seen). I just want to wake up and know this year never happened.


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