silent

Kristalee · Regular Joined: 06 Nov 2008 Posts: 43

Hi Tammy

I can understand your anger and frustration. I myself don't have a tumor, my hubby does. I can't even begin to imagine how you feel.
Sorry about your dad, what awful news.
I think its good that your doctors are taking time with your case. I know how it feels to wait, its been almost a month since Mark's surgery, and we haven't even started treatment yet.
Everyone has been telling us to take one day at a time. It's easier said then done, I know! I'll be praying that you get some ease of mind!
Krista

brainman · Posted: Fri Nov 07, 2008 9:49 pm Post subject: Re: silent

Hi Tammy. I just wanted to suggest that you start taking a notebook with your questions in it. I have one that has kept me from forgetting to ask a question on many occasions.

I had the some problem with the waiting game. I know that my cancer was back at the and of June 2005 but did not have any treatment until the end of October 2005. Those were very hard months. I called the office every week but every time I was told that the team either still had not received some test result or that the team had not yet had time to talk about my case Rolling Eyes

.

In 1992, my glioma was a grade II. Because of the significant danger involved in brain surgery (possibility of loss of speech and use of right side), they opted to try chemotherapy first with monthly MRIs to make sure it was working. After 3-4 months, they could not see any living cancer. I remained cancer free until 2005. Trying chemo first makes a lot of sense. If chemo does not work, they can always to surgery.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

Tammy · Posted: Sat Nov 08, 2008 11:49 am Post subject: Silent

Hi Krista,
Thank you for the kind words, feels good knowing I am not alone. I hope all does go well with your hubby. It's a heck of a twisting road to be on but it does help when you have a loved one right beside you....Stay strong for the both of you...I know you can do it~ Smile

A friend Tammy~ xx

Hi Jim,
Thank you so much for the response, I could not wait to hear from you, I always seem to feel better after seeing what you have to say about things. I think its easier when you have someone who has been through it all. Starting the chemo pills should be a great start then, I am a little nervous as my gram could not tolerate it was killing her, but I will be strong and keep telling myself it will work and I will handle it!! So hard to believe a small pill could save a life. I pray that I have a positive outcome from the chemo as you have had. I hope you are doing well and that your depressed time come less often, and more happy times to follow, Take care my friend....Tammy~xx

You are all in my thoughts and prayers,,, xx
If you see someone without a smile, give them one of yours!
~*~Tammy~*~

If you see someone without a smile today
give them one of yours!

Speak kindly.Live simply. Love seriously. Care deeply.

Mama 2 2 · Posted: Sun Nov 09, 2008 1:41 am Post subject: Re: silent

Hi Tam,

I too had a notebook for questions - I would keep it somewhere easy to find in the house, and whenever a question popped into my head, I would go straight to the book and write it down. I would try to also write the answers down at the doc visit, but often I would also be looking after one or both girls, which made it tough.

It worked very well until I put the notebook on top of the car the other day and drove off the ferry with the notebook still on the roof! Once we hit the highway I heard a funny sound on the roof and looked in the rear-view only to see it flying off behind us. Embarassed

Until that point it was quite helpful. It can also help to have people come with you so you can have two sets of ears listening to the doctors - and that may help ease some nerves too.

If the chemo they are talking about is temozolomide (temodar/temodal) - which seems to be the 'go to' drug for brain tumours these days, most people seem to handle it quite well. Heavy fatigue for the first few days while taking it, and an awful taste according to my hubby - but otherwise not too bad. Hopefully you will find the same.

~C~
_________________
Our Story: http://www.cancerforums.net/about7982.html
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Tammy · Posted: Wed Nov 12, 2008 1:09 pm Post subject: Silent

Hey everyone!! Believe it or not there was snow here this am,,man I can't believe winter is right around the corner..oh well has to come sooner or later.
I still have not heard anything from my surgeon, been a week today since I have seen him. Takes time I guess. I am not the only one.
I do have a book with questions for my doctor, but shy away from it when I am in the office. I fear my questions won't make since to him. For example the top of my head. You know when your foot or leg falls asleep..that prickly tingly feeling you have, well that has been going on with my head.
he feels it is nothing related to my tumor. I do not know what else it would be.

I wonder if I am making a mistake by doing another biopsy and maybe start chemo treatment? or should I wait until there is more troubles with me? This is so confusing when you have to make such a huge decision specially when its your life. Is it true that a person can only have so much chemo or radiation in their life? because I want to keep to for the end to by myself more time. You know I am seriously thinking this tumor is messing with my thoughts and moods, I am so not me at times, could be the stress of it all, I don't know, hard to explain today. Can't seem do things properly, my train of thought, figuring out things, just small thing I have been noticing, maybe lI ost my creative side. There is one thing I am sure of and that's this place, helps me deal with things, helps me see the light at the end of the tunnel, and mostly, knowing I am not being judged..Thanks for listening and hope you are all doing well
Always thinking of you all... Have a wonderful day.

~*~Tammy~*~

If you see someone without a smile today
give them one of yours!

brainman · Posted: Wed Nov 12, 2008 2:02 pm Post subject: Re: silent

Tammy, the only way for you to know the best options for you if for you to have all the information you need so ask all your questions to your medical team. You are right, these are major decisions.

Any one organ can only take a certain amount of radiation before the radiation itself starts to cause cancer. The limit of chemotherapy is based more on system wide negative effects or lack of response by the tumor.

Brain tumors can definitely affect thoughts and moods... directly by putting additional pressure on the brain and indirectly by bringing up emotional issues. Tell your doctor about what you are experiencing. It is possible that he/she might be able to help.

Tammy, you continue to be in my thoughts and my prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

Mama 2 2 · Posted: Sat Nov 15, 2008 4:42 am Post subject: Re: silent

Hi Tam,

Do you have anyone who could go with you to the appointments and ask the questions for you?

You could write the questions, but just have someone else ask them. It's taken a while, but I've really learned to work to get all my questions out, and keep asking if I feel like the person has 'gone around' my question.

I've even found doctors who don't let you finish your question before they start answering - then of course it's not the information I'm looking for - and I've finally learned to cut 'them' off and tell them to let me finish my question! Unfortunately, even though we are all going through something so horrible, we need to 'stick up for ourselves' at times. Even if the questions don't make sense, you have a right to ask them!

baby's crying, gotta go - sorry!
~C~
_________________
Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis

Tammy · Posted: Wed Nov 19, 2008 2:21 pm Post subject: Silent

Hi everyone.
Well I got my call to go to the oncologist tomorrow morning. It's about a 2 1/2 hour drive. She called and asked me to bring all my mediations that I am now. It sure didn't take long this time. Seen my surgeon on the 5th. There must of been enough of a growth to start treatment. Unless she only wants to talk. I have a sheet with all my questions and I am bringing my parents with me. My hubby and I have decided that I will go with my parents this time and if I have to run for treatment he will be taking me. He is our main provider, thank god he has a great job, only one downfall there is no pay when he is off.. *shrugs shoulders* oh well, can't have it all I guess. I am a little nervous, I hope my body can take what ever they are going to give to me, because I really do not want the big surgery, I had a rough time with the biopsy and that was only 3 hours and 5 mins long. My mind is really racing right now, so many what if and what about...I guess all those will be answered tomorrow. I want to thank you for the support and keep your fingers crossed for me tomorrow. It's snowing here, I bet that's from you C...LOL...Oh well I know we have to get it one day or another.
Take care everyone... xx *HUGZ* to you all.. ~*Tammy~*

Love is like the wind, you can't see it, but you can feel it...

plugh · Regular Joined: 18 Oct 2007 Posts: 48

Tammy, wishing you the very best of luck for tomorrow and we'll be thinking of you and keeping everything crossed too.

brainman · Posted: Thu Nov 20, 2008 7:05 pm Post subject: Re: silent

Tammy, you are always in my thoughts and prayers. I hope the news is good.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

Tammy · Posted: Fri Nov 21, 2008 12:47 pm Post subject: Silent

Hey everyone!
Had some snow fall the night before my trip and it was a bit scary as the roads were bad for some time, but did get better as we were getting closer to Moncton. Well the doctor that I seen yesterday does not want to start radiation now because of the size and when they would do the radiation it will affect other parts of my brain and it could be permanent, if I was in my 60-70's she said she would but been I am only 36 she wants me to have the best quality of life as I can, I can have up to 25-30 years if they really watch me and keep it from growing. The tumor can not be removed because of where it is, it's in my motor skills area.... So there is another specialist that she is going to send me to, she is a medical chemo doctor! I can't get over this ..... What's amazing about this, is I was looking at places that study the kind of tumor I have and the doctor I am going to see just graduated from there and I am going to see her!!!!!So she should know what's best for me... that makes me really happy. They say a full oligodendroglioma is rare, usually its mixed with an asrotcytes??. So I am waiting once again. Now for the chemo medical specialist to call. The way she talked it seems to me that I will likely starting chemo in the upcoming future for now and I might be able to have it done here in my home town. The doctor I seen yesterday says its may be an 6-8 week intervals which can take up to a year, there is a pill form also but she didn't say to much about it. So all in all I guess it was an ok visit, now I know they are going to finally start trying to kill the thing. I still am really scared and I truly hope I can handle the chemo.
Another dilemma in my life is my dad. My mom just called and dad got his call today, he goes on the 7th of Dec and his surgery is on the 8th, they are going to implant a radiation seed. They say it lasts a year and should kill his cancer. My gram is getting more and more weak, I honestly think she gave up, geese that hurts to see that, she is off the chemo her body could not handle it. Well my friends I hope all is well with everyone and you all are always in my prayers and I think of you often.
Take care..... xx *HUGZ*

I wish you all comfort on your difficult days..And a gentle hug when your spirit sags...Take care xx

~*~Tammy~*~

4lindsay · Regular Joined: 12 Apr 2008 Posts: 31 Location: Seattle

Hi Tammy,

I sent you a private message. It's hard to see but at the top of your screen it will tell you if someone has PM'd you. Hey, I just saw I had a message...guess I should have checked first Smile

jeanyb · Regular Joined: 19 Oct 2008 Posts: 15 Location: UK

Hi Tammy,
just wanted to say I have been thinking about you and your visit to see the neuro, I am glad you feel more positive about your treatment plan and you sound more confident about the doc you saw. I hope the chemo goes well for you and you start to see a reduction in symptoms very soon. This whole journey seems to take so many twists and turns and there are tough times ahead no doubt. please let us know how you are doing, much love and hugs
Jeany xx Smile

_________________
Jeanyb

Tammy · Posted: Tue Dec 16, 2008 3:11 am Post subject: Silent

Hi all my friends,
It has been awhile since I have last wrote anything. My appointments went well but I am major confused. I had went to see the radiologist and she said my tumor has grown but she does not want to start any radiation as it is to big and it will affect more of my brain and I will have more damage than I do right now. So saying that she had sent me to see a chemo doctor. I seen this doctor last week *nov 10th* and she feels my tumor has not grown, what she figures is that it was a blood vessel that has busted and made it look like it has grown. She says that there is another MRI to follow around the 3-26th of December to make sure that it was a vessel. I have called the hospital about the MRI and there is nothing scheduled for me as of yet. The meeting that she had about my case did not involved my neurosurgeon or radiologist but a few other doctors were there and a few other neurosurgeons there. I want to believe her so much but I have such a doubt about it as 3 doctors say it grown to 7cm and she said no. I asked to see my file and she said there was a fire in my neurosurgeons building there for she did not have it. She had told me to call my Nero to see about the MRI and his office is closed until further notice due to smoke damage, no forwarding phone number and not allowed to leave any messages. Fusterating...I have called my family doctor yesterday and I see him thursday for other health issues and to get things straitened out. He himself *my family doctor* said it grew. I do not know who or what to believe or even where to put my head right at the moment. I have never been so mixed up in all my life since I been dealing with this lil nasty. I don't sleep much I cry allot. Just baffled. I so can not wait until thursday to get some answers. On the flip side of this the chemo doctor told me I could have 15-20 years and if it did actually grow that I will have to start treatment and she would like to start with both chemo and radiation. SO if that happens I was already told that if I start radiation there will be more damage to my brain, good lord I am on a major rollercoaster now. The chemo doctor I have seen she had also told me that they usually do nothing for a grade 2 oligodendroglioma, just watch and wait. I hope this is a good thing been my tumor is already 7cm x 5.2cm x 6.4cm. I have been told that it is a very large tumor by the radiologist. WHAT DO I BELIEVE??? I suppose they say everything happens for a reason, but gee I want to know this reason for the bounce around.
Besides all this my gram passed away Nov 28th. She is now at peace but I am having troubles swallowing her death, she was my chum.
I have one great news though, my father has went through his surgery *prostate cancer* with flying colors so I am really happy with that.
I have been trying my best to let myself to believe my tumor has not grown and I decorated like a mad person here at home,,ha ha ,,,putting up 2 trees and all. One tree in my living room the other in my entrance. I am trying my best to live by this quote at the moment:
~~The happiest people don't necessarily have the best of everything; they just make the best of everything they have.~~
Have a had time but forcing myself. It is now am, up again.. well I think that was enough on my self pity trip, there are more people worse off than me ,,, but I really had to let all this out before I explode. I hope all you friends are ready for Christmas and I truly hope you all have an amazing one, I am always thinking of you day in and day out.....
Take care one and all much love sent from me and prayers too xx

~*~Tammy~*~

The happiest people don't necessarily have the best of everything; they just make the best of everything they have. Smile

Merry Christmas my friends Wink

4lindsay · Regular Joined: 12 Apr 2008 Posts: 31 Location: Seattle

Tammy~

I don't know if there's any possibility of you being able to come to the Seattle area for treatment. My daughter has an oligo grade 2 that was very large (for the 2nd time.) Her original surgeon said it was inoperable but we went to U of W Medicine to a surgeon who only deals with brain tumors. He's top doc on the west coast! We had surgery almost 2 weeks ago and he did a magnificent job removing all of the tumor. Hers was even partly in a risky area (corpus callosum) and he got that part as well. Typically these doctors only take the wait and see attitude after they've done a resection to "wait and see if it comes back." My daughter wanted to schedule her surgery 2 months from now and they said, "Which day next week would you like?"

If there's any way you could do it and you want contact info for the neuro oncologist and surgeon, private message me and I'll get it to you. Actually, I just realized where New Brunswick is...maybe you could check out NIH (National Institutes of Health). It is a huge cancer research center that is free of charge except meds.

Take care!
Dianne

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