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Newbie, Here for my mom


phylsgirl

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Hi all,

I have been reading posts on this site and Onctalk.com as well for for awhile it is time to come out of lurk mode and say hi.

My mom, was diagnosed with non-small cell lc with brain mets on 12-17-2007.

My grandmother, my mom's mom and my brother are my mom's primary caregivers as I live about 1,000 miles away but I have been home twice since the Dx my last visit was a month ago and I went home a week after her Dx to ring in the New Years' with my family.

Needless to say I speak to my mom often on the phone.

It was really my grandma that recognized something was wrong with my mom. My grandma is a retired nurse. My grams said to herself, "does my child have a brain tumor?'

Yeah, there were some tell tale signs we all picked up on in my mom's behavior and functioning but my grams called it.

It was my grandma and my brother that took my mom to the ER and my grams TOLD the doctor what tests she wanted performed on my mom.

According to my grams, the doctor said to her. "Well, since you put it that way, how can I say no." and

proceeded to run the tests which unfortunately confirmed my grams thought-the brain tumor

was diagnosed first and after further testing, the tumor on the lung was found and biospsied.

Dec 18 2007 was the night my world changed forever and I was just ripped apart. And yet as my brother was telling me the Dx and the doctors prognosis and I am crying and hyperventalating there is something in me that refuses to accept the doctors' words.

Something in me said then and says now, My mom is a warrior and and a survivor.

I don't know how my grams does it, but she takes my mom to all her appointments, makes sure my mom

eats, takes her meds, whatever it takes. And my brother has grown up so much through all of this, I am so proud of him.

I always hated the "c" word even before it affected my family. I saw what it did to others and their families and it is ugly But now I just loathe it, in any form, but especially in the lung.

Although my family's battle is just about three months old, it seems like a lifetime and it is not just finding the right medical treatments and doctors, but the maze of insurance, appointments, but there are many bright spots.

Our family (aunts, uncles cousins, etc) and for me being at such a distance from my mom, my co-workers have been truly amazing with their support (spiritual especially).

One of my co-workers in particular has adopted my mom as her own and they have never met, but they speak on the phone at least once a week and my co-worker has sent my mom a few gifts.

I just want to say thank you to Katie for founding this forum and to all the survivors, caregivers and supports systems on this board for all you do. This is really a place for hope.

And I shout out to Dr. West at Onctalk.com for imparting medical knowledge to the layman/woman;a powerful ally in this battle.

Hope I wasn't too long winded, I do that sometimes :D

Ree

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Hi, Ree -- that's your mom in the photo? Wow! I must say you certainly write well for age 6!!!

But that was a wonderful introduction, and I want to be one of the first to welcome you to the LCSC. I was just over at OncTalk razzing Dr. West in a forum post, and I agree he's nothing short of amazing.

Best wishes and Aloha to you and your mom and the whole family,

Ned

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Hi Ree -

Welcome!! So sorry to hear about your mom - it has to be doubly hard with you being so far away!! But -it sounds like she is in good hands with your Gram!!

Hang in there - and please don't listen to statistics. You will find we here don't put too much stock in them.

Let us know what we can do to help you.

Hugs - Patti B.

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Hello Ree and welcome

Your mom is so fortunate to have not only a great daughter but such a wonderful support system, too.

Sounds like she is in great hands with your gramma and is getting what she needs to fight this monster.

Please keep us posted and let us know how we can help. We are here for you whenever you need us..

Warmly,

Christine

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Thanks for the welcome Reece101!!!

>>>Wow! I must say you certainly write well for age 6!!!<< :lol::lol:

Yes I agree Dr. West and his colleagues over at Onctalk are amazing. I have not posted over there yet, I am in "student-mode" right now soaking up as much knowledge as I can get at Onctalk. As soon as I can, I plan on making a donation to GRACE.

Ree

(Phylsgirl)

"recce101"]Hi, Ree -- that's your mom in the photo? Wow! I must say you certainly write well for age 6!!!

But that was a wonderful introduction, and I want to be one of the first to welcome you to the LCSC. I was just over at OncTalk razzing Dr. West in a forum post, and I agree he's nothing short of amazing.

Best wishes and Aloha to you and your mom and the whole family,

Ned

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Thank you Sandra for your encouraging words and you are so right, it is a life changing journey for sure. It seems the date of my mom's Dx was a dividing line for me in this journey of life, does that make sense? I guess that is what is meant by the "new normal" for all of us.

Ree

(Phylsgirl)

"SandraL"]hey there Ree. What an introduction! Loved it, being a long winded woman myself. Welcome and hope you stick around. It is a journey for sure, for all involved. And we are all here to help each other make that journey just a bit easier. Take care
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Thanks Patti

And you are so right-I don't listen to statistics. At first, I guess I did put alot of stock in the stats and everything seemed so bleak.

Even the intial doctors that examined my mother after she was admitted from the ER were not exactly inspiring. But to be fair, one of the tumors (she had 3) on her brain (occipatal lobe) was HUGE. But I still would not accept their perspective on prognosis

It was my mom who was the inspiration. I said to her, "Ma, are you ready to fight?" And she said, "Ain't no wussies here." And I think that helped to get me started changing my way of thinking.

Another person who is very encouraging is my mom's oncologist (God Bless him!!!) After the first consultation in Dec 07 with Dr. Mac. He said (not in a bragging way) "You know, I have some patients who, by medical science, should not be walking around today." Those truly changed things for all of us especially my brother.

While my grams and brother were giving him kudos on his 'successes' Dr. Mac says, "It's not me, it's HIM." pointing his finger towards Heaven.

Another thing Dr. Mac said as he was outlining my mom's chemo was, "After the chemo treatment, we will continue on to those treatments that will continue to sustain your mom." He always speaks with hope and encouragement.

I also have to thank my mom's neurosurgeon, Dr. Miller. My mom was admitted to the hospital after her seizure so he never consulted until that moment. He spoke with my grams to get up to speed on what was going on.

From what I gather (my interpretation) it seemed Dr. Miller felt the other doctors, (not Dr. Mac) were kind of dragging their feet (again this seemed to go back to intial negativity surrounding the initial Dx). His words were like, "What are we waiting for?" in response to the surgery.

So yes Patti, I don't let the negativity linger, I am realistic, but I just keep praying and asking for all the good things and medical personnel to come my mom's way. But it is a journey and you have to not only stay strong but be proactive in researching things.

I think that helps me since I am so far away from home.

As my mom told me back in early January, "Whatever happens, we are going to be okay."

Ree

(Phylsgirl)

"Patti B"]Hi Ree -

Welcome!! So sorry to hear about your mom - it has to be doubly hard with you being so far away!! But -it sounds like she is in good hands with your Gram!!

Hang in there - and please don't listen to statistics. You will find we here don't put too much stock in them.

Let us know what we can do to help you.

Hugs - Patti B.

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Ree-

I am so glad that your mom's doc is so supportive. You will find here that some people have not been that lucky with supportive docs.

Even my former onc (he moved to Texas) originally gave me bleak news. I kept telling him that I WILL see my son graduate in 3 1/2 years!! Originally he said no, you won't, but as he got to know me he had to admit that I am just stubborn enough to do that!! :lol: But it sounds like your moms onc is just great and doesn't believe in the doom and gloom!!

I wish your mom continued success and please keep us posted.

Hugs - Patti B.

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Welcome Ree,

What a great introduction and what a great family you have!! Your grams sounds so strong, like the family rock and your mom's attitude couldn't be better.

I am hoping for complete success for your mom. It can and does happen- we've lots of survivors here that can attest to that. Hang onto hope and post when you need answers or need to lean on us. These are the greatest folks- but you know that from lurking!!!!!

Welcome again and I look forward to more of your posts.

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