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Glioblastoma multiforme - a sucky tumour

plantlust's picture

Just wanted to post a brief blurb. My mother has been diagnosed with Glioblastoma multiforme. The outcome choices are bad (1-2 years) or REALLY bad (10 months - 3 if no treatment). There is no cure.

She's had symptoms for weeks, maybe even years but we didn't THINK. Her co-workers noticed something was "off" on Sunday but it wasn't until Wed that one of them actually convinced her to get it checked out.

Word to the wise - think really hard about getting a checkup if:
1 - you experience very strong smells, ghost smells or not.
2 - headaches on a daily basis (whether or not they are strong enough that you need to take drugs)
3 - lose words or forget work procedures that you've done for 30 years.
4 - tired
5 - don't do things that you normally take pleasure in

Docs are doing a needle biopsy today. This is to figure out the type/grade.

Do not meddle in the affairs of dragons, for you are crunchy and taste good with parsley sauce, goat cheese garlic mashed potatoes, Galena Cellars Niagra grape wine & Pie Boss's apple crumble topped with Ruth & Phil's sour cream/cinnamon ice cream.

gardencat's picture

I am so sorry. This is a very (post #68941, reply #1 of 54)

I am so sorry. This is a very hard diagnosis and, as you say, does not have a good outcome at all. My thoughts are with you and your family as you go through this journey.

Thank you for thinking of others and sharing your list of warnings!

Bramma's picture

This is such a hard time for (post #68941, reply #2 of 54)

This is such a hard time for you. Your friends in the community here are thinking of you, sending out prayers for you and your mother.

AnnL's picture

Hugs to you and your family. (post #68941, reply #3 of 54)

Hugs to you and your family. It sucks. Nothing else to say. :-(

Ann
"The elders were wise.  They knew that man's heart, away from nature, becomes hard; they knew that lack of respect for growing, living things, soon led to lack of respect for humans, too."  Chief Luther Standing Bear, Lakota Sioux

Gretchen's picture

PL, I am so sorry. I didn't (post #68941, reply #4 of 54)

PL, I am so sorry. I didn't see you post this at CTC. I know everyone will want to know. Many do not come here until it gets "fixed" if it does.
Our thoughts are with you. You know the prognosis. This is unfortunately the tumor Ted Kennedy had.

Gretchen
Pielove's picture

My sympathies on your (post #68941, reply #5 of 54)

My sympathies on your mother's diagnosis, that is so difficult. Best wishes for you both...

pie

SallyBR1's picture

I am so very sorry.... you (post #68941, reply #6 of 54)

I am so very sorry....

you and all your family will need a ton of strength to go through what is ahead. I hope you know that you have many virtual friends here that care about you...

Carole4's picture

I am so sorry. Take care of (post #68941, reply #7 of 54)

I am so sorry. Take care of yourself, too. You will need a lot of strength.

Adele's picture

I'm so sorry PL. (post #68941, reply #8 of 54)

I'm so sorry PL.

But, but, it's SUPPOSED to taste like that!

Heather's picture

I'm so sorry to hear this. (post #68941, reply #9 of 54)

I'm so sorry to hear this. Thank you so much for taking the time to list the symptoms. We all need to learn to listen to our bodies.

I hope your mother can remain comfortable for as long as possible. Hugs to you both.

plantlust's picture

Docs are not doing a needle (post #68941, reply #10 of 54)

Docs are not doing a needle biopsy. They've decided since they are going in anyway, they will do something about the swelling. My guess is remove as much of the tumour as possible.

Word is either today or tomorrow. I will know more later today, when I go back to the hospital.

I am still shaking my head over this hospital. It has a 4 story atrium w/a wall of water, trees and art. It's like a Mall of Medicine!

Do not meddle in the affairs of dragons, for you are crunchy and taste good with parsley sauce, goat cheese garlic mashed potatoes, Galena Cellars Niagra grape wine & Pie Boss's apple crumble topped with Ruth & Phil's sour cream/cinnamon ice cream.

plantlust's picture

01/19/2009 at noon Central (post #68941, reply #11 of 54)

01/19/2009 at noon Central Time. Surgery will take 5-6 hours, unknown outcome, unknown side-effects.

Do not meddle in the affairs of dragons, for you are crunchy and taste good with parsley sauce, goat cheese garlic mashed potatoes, Galena Cellars Niagra grape wine & Pie Boss's apple crumble topped with Ruth & Phil's sour cream/cinnamon ice cream.

Jean's picture

You'll both be in my thoughts (post #68941, reply #12 of 54)

You'll both be in my thoughts and prayers today. God Bless.

A  clear conscience is usually the sign of a bad memory.
http://www.thebreastcancersite.com/
help to provide free mammograms for women in need
AnnL's picture

Sending prayers to your mom (post #68941, reply #13 of 54)

Sending prayers to your mom and you. Keep us posted.

Ann
"The elders were wise.  They knew that man's heart, away from nature, becomes hard; they knew that lack of respect for growing, living things, soon led to lack of respect for humans, too."  Chief Luther Standing Bear, Lakota Sioux

Pielove's picture

Sending best wishes for a (post #68941, reply #14 of 54)

Sending best wishes for a good outcome...

pie

jojo's picture

I hope for the best for you (post #68941, reply #15 of 54)

I hope for the best for you and your family under these difficult circumstances. Take care.

plantlust's picture

She squeezed both hands, (post #68941, reply #16 of 54)

She squeezed both hands, moved both legs & ankles and talked non-stop(some of which made sense), last night.

Doctor conference today, will advise with further updates.

Do not meddle in the affairs of dragons, for you are crunchy and taste good with parsley sauce, goat cheese garlic mashed potatoes, Galena Cellars Niagra grape wine & Pie Boss's apple crumble topped with Ruth & Phil's sour cream/cinnamon ice cream.

AnnL's picture

How are you holding up (post #68941, reply #17 of 54)

How are you holding up through all this?

Ann
"The elders were wise.  They knew that man's heart, away from nature, becomes hard; they knew that lack of respect for growing, living things, soon led to lack of respect for humans, too."  Chief Luther Standing Bear, Lakota Sioux

plantlust's picture

Ok, I guess. None of us are (post #68941, reply #18 of 54)

Ok, I guess. None of us are getting much sleep. As far as what I think? It sucks. She didn't even get to retire and odds are likely she won't see Nephew#1 get a real job, Gabi go to kindergarten or Max to HS. If it's as bad as I suspect, she won't even see her shooting star, redbud or trillium bloom this year.

On the plus side, she was able to get out of bed & walk last night and her speech is better but there is still some word swapping going on.

Do not meddle in the affairs of dragons, for you are crunchy and taste good with parsley sauce, goat cheese garlic mashed potatoes, Galena Cellars Niagra grape wine & Pie Boss's apple crumble topped with Ruth & Phil's sour cream/cinnamon ice cream.

Adele's picture

{{{{{Hugs}}}}} (post #68941, reply #20 of 54)

{{{{{Hugs}}}}}

But, but, it's SUPPOSED to taste like that!

plantlust's picture

Mother has been moved from (post #68941, reply #21 of 54)

Mother has been moved from ICU to her own room(children under 10 and flowers are now allowed!). I was there last night and her voice was much stronger and she made more sense. Don't get me wrong, she is still answering some questions in numbers but things have improved.

The neuroncologist is waiting for the detailed report from Pathology. Apparently, they are testing this down to the molecular level in order to figure out which tumour it is. This is to create a better treatment procedure. Report may take a week.

Also, (I found this interesting)I was upset about Mother being given anti-seizure medication when she hadn't had a seizure and found documentation indicating that recommendations had changed. Do NOT give anti-seizure medication unless someone has had a seizure, right? Wellll, olfactory hallucinations (Mother was smelling VERY strong flowery perfume when there was nothing in sight to account for it) are a type of seizure! I had no idea and wish this would have been explained earlier.

Do not meddle in the affairs of dragons, for you are crunchy and taste good with parsley sauce, goat cheese garlic mashed potatoes, Galena Cellars Niagra grape wine & Pie Boss's apple crumble topped with Ruth & Phil's sour cream/cinnamon ice cream.

ICDOCEAN1's picture

So sorry to hear about your (post #68941, reply #22 of 54)

So sorry to hear about your mom, my prayers are with you and yours.

Still laughing about your dog foster comments!

kathymcmo's picture

That's good news she is out (post #68941, reply #23 of 54)

That's good news she is out of ICU, I hope she'll be able to rest a little more without as many nursing checks and machines to disrupt her rest.

It's quite a whirlwind/merry-go-round that you find yourself on, since the diagnosis, so many tests/procedures/decisions to endure. I am sending good wishes your way.

gardencat's picture

I'm glad your mom is (post #68941, reply #24 of 54)

I'm glad your mom is progressing. Yes, seizures take many forms and it can be very difficult to understand. I'm sorry they did not explain it to you before. My thoughts are with you as you go through this.

Pielove's picture

Hang in there, we are rooting (post #68941, reply #25 of 54)

Hang in there, we are rooting for your mother (and you too!)

pie

SallyBR1's picture

I wish there was something to (post #68941, reply #26 of 54)

I wish there was something to say, but I can only give you a big virtual hug....

You are in my thoughts...

annieqst's picture

PL: Many hugs to you, your (post #68941, reply #27 of 54)

PL: Many hugs to you, your mom and your family. Holding all of you in my thoughts and prayers.

plantlust's picture

Detailed pathology report (post #68941, reply #28 of 54)

Detailed pathology report w/doctor is today.

Do not meddle in the affairs of dragons, for you are crunchy and taste good with parsley sauce, goat cheese garlic mashed potatoes, Galena Cellars Niagra grape wine & Pie Boss's apple crumble topped with Ruth & Phil's sour cream/cinnamon ice cream.

AnnL's picture

Not sure what to say. You (post #68941, reply #29 of 54)

Not sure what to say. You and your family are in my thoughts.

Ann
"The elders were wise.  They knew that man's heart, away from nature, becomes hard; they knew that lack of respect for growing, living things, soon led to lack of respect for humans, too."  Chief Luther Standing Bear, Lakota Sioux

whatscooking's picture

Sucky, sucky, sucky. I wish (post #68941, reply #30 of 54)

Sucky, sucky, sucky. I wish all the best for your mom and you.

Chicago-style deep-dish:  "Pizza for people who just aren't fat enough"
Anthony Bourdain
http://theoutdatedkitchen.blogspot.com/