Husband w/Oligo

brainman · Posted: Fri Feb 27, 2009 7:46 am Post subject: Re: Husband w/Oligo

Hi Chelsea. I am so sorry to hear that your husband's cancer has recurred. It sound like the two of you are keeping a good attitude about it.

You know that you and your husband are in my thoughts and 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

anjiep · Regular Joined: 15 Jun 2008 Posts: 16

Oh, Chelsea,
I am so sorry to hear the bad news! Your family is my prayers!!! Please keeps us updated.
Anjie
_________________
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Mama 2 2 · Posted: Fri Mar 06, 2009 1:29 pm Post subject: Re: Husband w/Oligo

Thanks everyone for their support - it's comforting to know how many people from near and far are there for us.

Roman, thanks for sharing your caringbridge site - I've been catching up on you and your wife's story - it seems like you have managed to keep your sense of humour and a positive attitude which is so important. It reminded me of Elias' first surgery where his brothers, my parents, my best friend and I were all cracking jokes in the waiting room, playing backgammon and cards. The other people waiting in the same room must have thought we were nuts!

After the blow of the news last week, things have calmed down some. With two little ones, life just has to keep going. Elias was feeling some frustration yesterday though about not being able to drive them to their music/ballet classes and that we have to rely on my mom for that help. Sometimes he also feels terribly itchy from the natural treatments he takes and he feels like he just can't do anything but sit by the fireplace and watch the girls play. He took them to a play group the other day and was running around with them, but then his legs were just burning and he felt worse off for it. He feels some pressure in his head still off and on, and a lot of fatigue, but other than that he doesn't have much in the way of deficits which is surpising when you look at his scan - but he still feels useless which frustrates him.

We should have a good weekend though - we're going to see the naturopath tomorrow, but then we're off to visit his parents to celebrate my daughter's 4th birthday!!! Sunday my sister is coming in from out of town with her daughter who is also 4, and we'll have dinner and cake etc with my parents. We'll also celebrate my sister's birthday which is the same as my daughter's.

I hope you all are well - my thoughts are with you all.

~C~
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Roman957 · Regular Joined: 22 Feb 2009 Posts: 27

Thanks Chelsea, we have tried to maintain a positive attitude as much as possible as it appears to be a common theme among all survivors. It sounds like you have a wonderful weekend in store to share great times with your families. Enjoy! I don't know what the weather will be like on the west coast but we are getting fantastic weather here for a change.

Today was a difficult day for us. Liana and I attended the funeral for a high school friend of mine who passed away this week from cancer. She would have turned 51 on March 10. Her cancer was in her bowel/liver and was diagnosed just a year ago. Our original intention was to attend both the funeral and the burial, however after the church service, my wife said she couldn't go through with it. She was just too fragile and emotionally upset. Although we have been to funerals for cancer victims before, this was the first since her diagnosis, and I guess the reality of what she is going through just hit her very hard. She told me that irrational thoughts kept intruding in her mind, like "am I next?" "what is going to happen to my kids?" "what is my funeral going to be like?"etc. The thing is we both know rationally and objectively that you can't compare... each patient and situation is unique, but to me it illustrates the effect and toll cancer exerts on all of us, not only physically but emotionally as well. That is why sites like this that allow us to connect with others and share the journeys we are on are so important. Thank you for allowing me to share my thoughts and feelings, and sorry for the bit of a downer to the message. Take care and God bless.
_________________
Roman

Mama 2 2 · Posted: Mon Mar 09, 2009 12:53 am Post subject: Re: Husband w/Oligo

Hello Everyone,

Quick question, but first some background - Elias spent much of the afternoon on his feet today working on making a birthday dinner for our 4 yr old and my sister, when rather suddenly he came to sit beside me and was asking me to get him some water right away. I brought some to him and he said he felt like he was going to have a seizure.

He has had 4 over the 7yrs since diagnosis, and the only one he felt coming was the last and I think since then he's been a bit more sensitive to it, worried about having one. He was extremely hot, sweating forehead, and said he felt like his heart was racing. My mom has a blood pressure machine and we checked him with it - his pulse wasn't too bad but his blood pressure was certainly on the high side.

He said he was feeling more pressure in his head as well - with a bit more of an ache this time. He hadn't been feeling too bad in the past couple of days, and while after handing the dinner making over to my BIL and taking time to rest for a while he perked up, but still wasn't feeling great the rest of the night.

Has anyone else out there experienced something like this at all? Because of feeling good the past few days he started to think that maybe the new chemo, etc was working - but then when something like this happens of course it's a worry that the tumour is growing more. Maybe it's a reaction to the treatment? Or just too much fatigue?

I have to be in Vancouver all day for work tomorrow (I usually work from home) and my parent both will as well so he'll be alone with the girls all day. I know he hates feeling watched or like he can't be alone, but after today I hate to be away. . .

~C~
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Kristalee · Regular Joined: 06 Nov 2008 Posts: 43

Hi Chelsea ,

Is Elias feeling better? That seemed like worrying news. Maybe it was a aniexty attack? Mark had one last night, and was running a low grade fever, since he has a cold. Did the doctors warn you of potenital seizures?
Sometime they use kolonopin and keppra together, Mark was able to sleep and calm down after I gave him one. Let us know how things are doing. I'm thinking of you guys!
Krista

Mama 2 2 · Posted: Thu Mar 12, 2009 7:50 pm Post subject: Re: Husband w/Oligo

Hi Kristalee,

Thanks for the note - Elias has been feeling better the past couple of days - still the odd pressure headache and fatigue, but nothing much else. I think you may be right - it was a busy day with the extra people in the house and the crazyness of all the kids running around - and while he wasn't feeling good and probably did need a break, he likely took how he was feeling and had some anxiety about having a seizure. He has also been fighting a cold for the past two weeks which doesn't help how he's been feeling.

I had a rough call with our nurse practitioner the other day though - I called her to let her know what happend. We were talking about a few things, and it came up that she feels that Elias probably only has a year, give or take, left to live.

As much as we've felt that may be the case, it makes it much harder to hear. I haven't told anyone what she said, except for Elias, as we are waiting for the next scan to see how he responds to this new treatment. We are still keeping hope in finding something that will give him a better chance of survival, but she said that the pattern of the way things have been going in the past few months for him shows that things aren't likely to get much better from here - in their opinion.

Of course, that is their opinion. We're trying a number of different supplements to keep him healthy, and even the oncologist we met with last month said she is shocked by looking at the scan that he doesn't have more deficits, but we are hoping to stumble arcross something that will do more. In the meantime, we cherish the time we have together and are working on making memories with our two beautiful little ones.

We are planning a trip soon, but aren't sure how well he'll feel travelling - so we are considering an Alaskan cruise. We can do round trip from Vancouver which cuts out the need for air travel, and he would have a bed close at hand at all times. We'll see.

Hope you all are well - take care!
~C~
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Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis

Mama 2 2 · Posted: Mon Mar 16, 2009 3:41 pm Post subject: Re: Husband w/Oligo

Hello again,

Elias woke up this morning and for some time couldn't get out of bed because of a really bad pressure headache. It was coming in waves and he could feel a 'thumping' that he felt like he could almost hear as well.

I called his NP and he's back on dexamethazone, 8mgs/day. Of course this could be swelling from the cells dying, and that is what we are hoping for . . .

After taking the dexa he's already feeling a bit better and is up and around. He's been complaining of a stiff neck for a couple of weeks too, and just yesterday and today it seemed to get much worse - has anyone else experienced this as a side effect? The NP asked me to check his temp to rule out menangitis, and he has no fever so she said that's not it, but she didn't really say anything else about it except to wait and see if the dexa helps with that too.

At least we have our trip booked now - not until May and after his next MRI though. I hope you are all fairing well - take care my friends!

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

Roman957 · Regular Joined: 22 Feb 2009 Posts: 27

Hello Chelsea,

As I am new to this journey compared to others, unfortunately I cannot offer anything useful in answer to your question. I am happy that Elias is feeling better and think it is wonderful that you have been able to book a family vacation in May. My thoughts and prayers are with you and your family.
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Roman

Tammy · Posted: Tue Mar 17, 2009 11:16 am Post subject: Re: Husband w/Oligo

Hi Chels,
How is everything? I am so sorry to hear about Elia's last mri. I feel so badly and with I could say something to make everything better.
I have not been following anyone's story for the pass few weeks as to much here going on.
Stay strong and I will always keep your family in my thoughts and prayers. I hope to hear some better news from you soon.
Here is a little quote for you...
You never know how strong
you are until being strong
is the only choice you have.

You never know how strong
you are until being strong
is the only choice you have.

Take care of yourself my friend,,,,
Tam xx Wink

Mama 2 2 · Posted: Thu Mar 19, 2009 10:37 pm Post subject: Re: Husband w/Oligo

Hi Everyone,

Well, it's been a rough week. After my last post Monday, he had much of the same troubles in the morning on Tues - waking up with pressure and having a hard time getting out of bed. After a bit he was feeling better, but the dexamethazone seems to mess with him so much mentally, he was convinced he hadn't taken the pills because he couldn't remember having taken them just a short time before. He was looking all over the bed trying to find them, thinking he must have dropped them and didn't want to listen to me tell him that he had taken them because he was so sure he hadn't.

On Wed we were going into town to see the naturopath, and on the ferry he was practically crying because he was so scared that if he couldn't be right beside me he would get lost and not be able to make it home. He spent two summers working on the ferry and knows it back and forth, but he had such a hard time figuring out where everything was. The dexa just seems to make him totally paranoid.

Over the past few days I was communicating with our NP about it all, and she felt it was warranted to bump up his MRI - it was scheduled for end of April, and all of a sudden they said they could do it next day. That was today. We haven't met with the n-onc yet, that will be on Tues, but we picked up a cd of the scan and it doesn't look good. I'm no radiologist and I can't tell the difference between swelling, growth, or dead cells, but to us it really looks like there is a fair amount of growth, more going up towards the top of his brain. It still doesn't look like it's compressing anything, but it sure looks awful otherwise.

The hardest is to see the difference it's made in him - his memory and ability to concentrate, but most of all the anxiety - getting completely scared for no apparent reason. They prescribed some ativan to help calm his nerves, but he hasn't tried it yet.

Anyhow, we are starting to feel like the np was right and he really probably doesn't have much time left. This is the third type of chemo they've tried in the last 1 1/2yrs and it didn't work at all. I think the next kind they will give him is Etoposide or Carboplatin, maybe with tamoxifen, but I can't remember right now, I guess they'll tell us on Tues.

Somehow we're managing to keep it together ok - we have our girls to look after - and he is still here and doing relatively ok aside from the memory and such - especially when you look at the scan you would think it should be much worse. He turns 33 on Sunday. I had been planning a surprise party for him on Saturday with family and a few old friends, but I may tell him about it as I don't know if a surprise would be best right now. At least it will be a good opportunity to talk with his family about it all, but it's his brothers who live elsewhere I worry about as it's hard trying to talk to them from overseas.

Sorry for the long post - even long for me Embarassed

. I hope you are all fairing well, and wish you all the strength you can find on this challenging journey.

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

Roman957 · Regular Joined: 22 Feb 2009 Posts: 27

Chelsea, I am so sorry to read your latest update. I cannot imagine how crushing it must have been to both you and Elias to see the new images and what appears to be new growth. Being so new to this myself, it is the one thing that has already hit home - the anxiety of not knowing if, when, or how aggressively a tumour will return. Do you feel certain it is the dexamethasone that is causing the symptoms he is feeling, because I was always under the impression that the steroids would help in those areas, but cause other side effects. I don't know, maybe everyone reacts to them differently. Could it be the dose, or possibly a combination of things causing the reaction? I pray for you guys everyday and the fact you continue to keep it together speaks to your strength and love. Keep hanging in there. God bless.
_________________
Roman

Tammy · Posted: Mon Mar 30, 2009 10:10 am Post subject: Husband w/Oligo

Dear Chelsea and Elias
I always am thinking about you and how you are doing. I hope you can try to keep your spirits up, yeah I know, easier said than done....But telling you anyways =)...I just wanted you to know even though I am not here to post to you I am still here reading at times, just checking up on all my buddies ..you all mean so much,,all of ya's Wink

. Take care of yourself and Elias best of luck hang tight! xx

"Laughter is the brush that sweeps away the cobwebs of the heart."
Your friend Tammy xx

Here is a little ptayer I found I thought I would share it with you all..Hope you don't mind I am pasting it here Cheals... Question

~~A SPECIAL LITTLE PRAYER~~

Every night I lie in bed
This little prayer inside my head

God bless my mom and dad
and bless my little child
and take care of my mate
they bring me so much joy.

And God there's just one more thing
I wish that you would do
if you don't mind me asking
to just bless my computer too?

Now I know that it's not normal
to bless a small machine
but listen just a second
and I'll try to explain.

You see, that little metal box
holds more than odds and ends
inside those small components
rest a hundred loving friends.

Some it's true I've never seen
and most I've never met
we've never shaken hands or
ever truly hugged, and yet.

I know for sure they love me
by the kindness they give
and this little scrap of metal
is how I get to where they live.

By faith is how I know them
much the same as I know you.
I share in what life brings them
so if it's ok with you.

Just take an extra minute
from your duties up above .
to bless this little hunk of steel
thats filled with so much love.

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