silent

Aimster · Regular Joined: 03 Jan 2008 Posts: 38 Location: Nebraska

Hey Tam,
I'm doing all right. Yes, I'm still working - my tumor is asymptomatic so life just chugs along as normal and most people have no idea there's anything going with me. Which is good and bad, I guess. My next MRI will be in the late April/early May time frame and if there's growth or change we will schedule surgery. So I'm trying to accomplish a long list of work and life tasks now, in case things get put on hold for surgery. My son's 2nd birthday is coming up so I'm getting ready for that, and going on a business trip in a few weeks too.

Unfortunately I'm having a lot of migraines lately. That's what led me to have an MRI and discover the tumor. I feel kind of cheated - I go to the dr to get help with these headaches; I come home with a brain tumor diagnosis AND I still have migraines! I've also had fibromyalgia for about 15 years, so this whole chronic pain thing is getting VERY OLD. Rolling Eyes

Sorry, that was my self-pity moment for the day.

Jim, I agree that you have a gift with people and you should get paid to use it Very Happy

Take care everyone!
_________________
Amy (39)
*low-grade oligoastrocytoma in right frontal lobe, with 1p/19q codeletion and early anaplastic features (first observed Aug. 2007; diagnosed Jan. 2008)
*gross total resection July 2008 at Mayo Clinic
http://cancerforums.net/viewtopic.php?p=28526

brainman · Posted: Mon Mar 10, 2008 7:12 pm Post subject: Re: silent

Aimster, from your mouth to an employers ears Laughing

. Thanks for the thought.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Mama 2 2 · Posted: Tue Mar 11, 2008 12:54 am Post subject: Re: silent

Hi Tam & everyone!

Tam, I'm sorry to hear about your Gram - I can totally sympathize. . . I feel incredibly blessed to still have all 4 of my grandparents in my life, though I know it's only going to be for a matter of time now and when that time ends, the fact that they have been there my whole life will make it that much more painful to see them go. I love the fact that my girls have had the chance to get to know them too as all four of them live relatively close and we try to see them whevever we go into town. It sounds like my Grandad might have to go into a home soon though, as it sounds like he is starting to suffer from dimentia. =(. I really feel for you and hope your Gram is doing better soon. . . .

As for your driving, my hubby only lost his license for 6 mos this time (after his first seizure and surgery it was a year) and he gets it back in two weeks!!! YAY! I think I'll be as happy about that as he will! Fortunately we live in a small town and he can walk to work, but when he wants to run out for small errands, we pack all four of us into the car - and taking a 3yr old and 5 month old anywhere is no quick trip.

My husband still has that bloody cough - the asthma puffer doesn't seem to have done much but make him light headed . . . though he said it helped a bit. We had a fun weekend though, as my oldest turned 3 on Friday, and we had a little party with some of her friends on Sunday. We tried to keep it as low key as you possibly can with a bunch of toddlers in the house, but it was a really nice day. I hope you have fun with your little one's birthday Amy!

Hey Jim - you should move up here to BC - they are looking for people to work in ALL kinds of jobs. It can be pricey to live, but at least the health care is covered. I know there's a lot of talk about wait times, but when it comes to things like brain tumours, we haven't found that to be an issue (though if you needed a knee replaced you would likely have something to complain about . . . ). We don't get NEARLY as much snow as Tam does either (though ours isn't as nice as in NB - it's more like wet sludge), but it does rain a fair bit. I've lived here my whole life though, so I'm quite used to it.

Well, I guess that's my update for now .. . all else is pretty normal - our next scan is in two weeks so it's starting to make my stomache turn a bit already, but I try not to let it get to me too much yet.

I hope you are all well!

Cheers!
~C~
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis

Aimster · Regular Joined: 03 Jan 2008 Posts: 38 Location: Nebraska

Mama 2 2,
Congrats to your husband on getting his license back! Sweet freedom!! I worry a lot about what would happen if I lost mine. The city where I live is pretty spread out and has practically no mass transit options Rolling Eyes

Glad you had a fun 3rd birthday party! We're just doing the family thing this year, no toddler friends invited, since he's only 2. Probably next year. I'll be keeping your family in my thoughts as you prepare for the next scan, and sending out prayers for good news.
_________________
Amy (39)
*low-grade oligoastrocytoma in right frontal lobe, with 1p/19q codeletion and early anaplastic features (first observed Aug. 2007; diagnosed Jan. 2008)
*gross total resection July 2008 at Mayo Clinic
http://cancerforums.net/viewtopic.php?p=28526

Tammy · Posted: Tue Oct 14, 2008 10:44 am Post subject: Silent

Hi everybody =)
It's been a long time since I have typed on here. I was thinking of you and thought I would read a few stories and write a note. Things have been ok here. I have had 2 MRI's my head/back the pass few months and my sugeon called for an appointment to talk about the results on November 5th. To give you a quick update on my symptoms; I have trouble getting out of bed most mornings, I not only have another tumor on my back, I have something wrong with my tailbone and a pertruding disc. There is one thing I am concerned about is my hands in the morning, they are very sore, stiff, cramped and difficult to get moving. They stay pretty much sore all day. I am wondering though if it's my pain medication or my brain tumor starting to act up again. Well I really hope most of you new people here are getting the comfort and help I have gotten from the people on this site. Please take care and I hope you still pray and keep your spirits high as you can.....
Take Care My Friends.......
Tam~ XoX *hugz*

Tammy · Posted: Thu Oct 16, 2008 5:15 pm Post subject: Silent

Hey Friends....I just received news from my doctor today that my tumor grew more. In 7 months it grew another cm. It is now 7.0 x 5.2 x 6.4cm. I am abit angry right at the moment, I was hoping on much better news, I still see my neuro on the 5th of nov, so I shall know more then..Take Care write more soon
Tam~

Mama 2 2 · Posted: Thu Oct 16, 2008 5:34 pm Post subject: Re: silent

Hi Tam,

I was so glad to hear from you as I was wondering how you were doing, but I'm sorry to hear the news of your tumour growth. You can see my story on the link below, but my husband's tumour has been growing more again as well. We have started a complimentary/alternative treatment from a naturopath here in BC since the oncologist didn't give us much to go on with our last visit.

We don't know yet if it's working, and it's costing a heck of a lot of dough, but hopefully we'll have an MRI soon to see - he's not scheduled for one for a while, but we may just pay to have one sooner so we can know what's happening. We've managed to keep pretty good spirits, but today seems to be a tough day. He got an infection in his arm from the iv they were giving him the treatment through, and it's so frustrating trying to figure out how to live our lives around all of this. My hubby seems really angry today and it hurts to see it get to him like this since he's usually the one who is so positive and he always talks about how much your attitude can affect your health.

It's too bad you have to wait until the 5th for your next appointment! If it's grown that much in 7 mons you would think that they would bump it up some. I know we are in Canada, but whenever Elias has had growth showing they have always acted pretty quickly - mind you he had grand mal seizures along with the growth so perhaps that's why . . . . Confused

I wish you all the best and keep us posted,
~C~
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis

Tammy · Posted: Tue Oct 21, 2008 12:31 pm Post subject: Silent

Hi....Everyone.
Hey C, I am so sorry to hear about Elias, I will have all of you in my prayers. *hugz from afar going to you*
I wish I could see my Neurosurgeon sooner, but it's first come first served I guess, I have always had to wait awhile to see him after the MRI's. My hands are getting real still lately specially in the morning. I am very klutzy more also.. I now have a walker to use in the mornings and at night, my back is giving me so much pain and trouble, there is a protruding disc that is pushing on the nerves. Doctor said they will only do the surgery when I can not walk or have inconsistency, he started me on a new medication *Lyrica*. He wants me to try this for a month to see if it will help me in any way. He thinks that I have osteoarthritis in my hands so I am waiting for the results on that. I feel like I am broken, to many things happening all at once. I wish I could rid of my anger, I have been praying and trying to focus my energy on different things, I am now making different cards, something like scrap booking but in cards instead of picture sheets.
All the reading I have done on Oligodendroglioma is making my head spin. No one seems to have the same outlook on that kind of tumor. One thing I would really like to know if any body here knows if where my tumor is and the kind it is, does it affect personality, because I am so up and down and all around, not really myself most of the times, hateful then cheerful.....I find my memory is not the same and I have a hard time to concentrate and one of the most annoying things is I repeat myself..GRR..well I should go and lay down for a few I am very sleepy. Take care my friends and talk again soon
Tam~ *hugz*

Enjoy the little things,
for one day you may look back and
realize they were big things,,,,,,,,
Have A wonderful Day..........Tam~

Tammy · Posted: Wed Oct 22, 2008 7:20 am Post subject: Silent

Hey again I am coming back and writing almost everyday again..It is very soothing for some reason, my anger is slowly going away...

I am reading the report of my MRI the doctor has gave to me and I was wondering if anyone knows the meaning of a few phrases:

1. Minimal mass effect causing sulci effacement.
What is sulci effacement?

2. The septum pellucidum is displaced to the left side by.4 cm.
What is septum pellucidum?

3. Low signal intensity on T1 and bright signal intensity on T2.
Is T1 and T2 meaning tests with the dye and without?

4. One last question my tumor measures 7.0 x 5.2 x 6.4 cm is that length, width and highth?

If anyone could help me on this please.

Tam~

Mama 2 2 · Posted: Mon Oct 27, 2008 5:03 pm Post subject: Re: silent

Hi Tam,

You're just like me - I always try and decifer the lingo on the mri reports too. I wish I could help you out, but that is out of my league. Confused

The one thing I try to do when I read the reports is pick out key words and google it to see if I can figure anything out, then use what I think I know and try to ask questions from our nurse. She quite informative and much more available than the oncologist. We have her email and direct line and she always gets back to us quickly. Do you have someone like that who meets with you regularily, or do you just meet with an oncologist? Half the time we only see her and the oncologist doesn't even come in to our visits.

Perhaps at your meeting next week you could ask if it's a possibility to have someone that works as a 'go-between' for when you have questions that arise between appointments.

Hope you are doing well otherwise - big hugs from across Canada! The weather in BC has been beautiful lately (not as much rain as usual Cool

), I hope it's the same for you on the other side!

~C~
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis

brainman · Posted: Tue Oct 28, 2008 7:09 am Post subject: Re: Silent

1. Minimal mass effect causing sulci effacement.
What is sulci effacement?
A. I believe the Silcus is the midline between the two hemispheres of the brain. "Effacement" means "distortion" or "disappearance". Silci effacement is more popularly known as a midline shift. The tumor is big enough to make one half of the brain press into the other half.

2. The septum pellucidum is displaced to the left side by.4 cm.
What is septum pellucidum?
A. The septum pellucidum is that butterfly shaped area along the midline of the brain that usually is black (no magnetic echo in an MRI). .4 cm is about 1/8 in. Again, the tumor is large enough to push this in.

3. Low signal intensity on T1 and bright signal intensity on T2.
Is T1 and T2 meaning tests with the dye and without?
A. The T1 and T2 are just different scans not having anything to do with the contrast. For the most part, this is just technical information to help the radiologist describe the images.

4. One last question my tumor measures 7.0 x 5.2 x 6.4 cm is that length, width and highth?
A. Lenght, width, and depth. My tumor in 2005 was 5x2.5x2... Tammy, the one you describe is large Sad

.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Tammy · Posted: Tue Oct 28, 2008 1:41 pm Post subject: Silent

Hi everyone, I hope you are all doing fine....
Thank you for the reply, I know my tumor is fairly large and that is really scaring me. I see my surgeon on the 5th. I know all the reading I have done it seems like most wait until there is a major difficulty in walking, talking, ext ... before they have the surgery. I don't mind waiting because so far I am doing alright not the best but alright. Don't get me wrong I want the stupid thing out NOW, but..... My main concern is the size of it, what if one morning I just don't wake because it pressed on something it shouldn't of...or maybe it burst a vein, I don't know what is the best thing to do. I find it really hard to decide when it is my life I am deciding on, what if I make the wrong choice..? My body is getting stiffer as the days go by I am thinking maybe arthritis or is it the tumor? another question for the doctor I guess. Well thanks for listening to my *feeling sorry for myself day* . It has been raining so much here since last night, I am thinking someone sent it from across Canada,, you know who you are he he .... xx Take care everyone..

Tammy~

Enjoy the little things,
for one day you may look back and
realize they were big things,,
Have A wonderful Day......

Mama 2 2 · Posted: Wed Oct 29, 2008 6:33 pm Post subject: Re: silent

Hi Tammy,

It must be tough to try and figure out the best thing to do - I hope at least you can feel empowered that you have a few choices and you can make the best decision for you. Elias and I both feel that in the start of this whole thing, we weren't really given any options, we were just told what was going to happen. We were specifically told to stay off the internet and did so. I think if I had found this site 6 1/2yrs ago and made myself more informed, as I have done now, we may have chosen a different treatment path. Ah well, we can't go down that road now because here we are and there's no going back! At least now we feel like we're taking some matters into our own hands with the naturopathic treatment.

I must say my dear, it's raining here today so I sure hope it's sunny for you now! Cool

This is the October weather I remember for BC! I think I have come to find the odd rainy day comforting - but I do prefer to have just the 'odd' rainy day rather than all the time. I hope through the rain you can still find something joyful in each day and focus on that - that always helps me when I'm feeling down.

~C~
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis

Tammy · Posted: Mon Nov 03, 2008 4:37 pm Post subject: Silent

Hi all,
Well what a ^&%&$ day. I can't believe what all is happening here in my family. I was told this morning my father has prostate cancer, just recieved the results this am. I dunno,,,I don't know where to put my head, I am heart sick, and confused as to why all this is happeneing arounds me, my grampy, gram, father and me...who next??? You know they say God works in mysteriuos ways well I can not figure this one out at all, and I have tons a anger now.
My dad was told he can have radiation for 8 weeks, or have a seed inplanted and that works for about a year. They do not recomend the surgery because he wold have to wear an undergarment because of leaking or someting like that. We are waiting for the call from the other specialist in Moncton to decide on what he is going to do. I have to rid of my fears/feelings/emotions, I feel like my life is a russian roulette, who is going to die first...Sorry but all my feelings been kept in all day today and I am blatting them now on here. I have to go might write more later to hard right now. Maybe watch a movie help change my thinking...
Tam

Tammy · Posted: Fri Nov 07, 2008 8:25 am Post subject: Silent

Well today is by all a better day. I seen my surgeon on the 5th and there is a swelling of my tumor. He says everything else looks great. He wants to sit and review the growth with his colleagues. He didmention about maybe having another biopsy along with possibly starting chemo pills. He is not sure yet as he wants the team to discuss it all together. I hope he is not waiting to long, he says that they want to keep a close eye on it and have another mri in about 6 weeks, so it is still the waiting game for me once again!! He says he will be in contact with me in a few weeks after they decide what to do. He was not very much help to me this time around and he said so himself , and apologized but said he did not want to decide on his own, I have a bad feeling about this, I am thinking it is to big to take out now,,,,, but he is the surgeon who deals with this every day and very good one as I was told over and over. He also says he does not feel that the prickly tingles I am always feeling in my head is not associated with the tumor. Does anyone know anything about the chemo pill he is talking about?. I hate that I never ask everything while I am in the office I am so nervous when I go in there, I was never a nervous person now I become nervous with anything. This is all I can add to my update . But I would like to know what you guys think about this. My tumor type is a grade 2 oligodendroglioma incase you forgot. Do you think another biopsy should be done and taking the chemo pills now is a good thing? or should I wait longer? Maybe until all my symptoms are much more severe? One other thing, I have noticed that there is not many with a tumor on the right frontal lobe as myself....Still confused here...

~*~Tammy~*~

If you see someone without a smile today
give them one of yours!
Live simply. Love seriously. Care deeply.
Speak kindly. Leave the rest to God!

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