Mom has Stage 4 NSCLC & mets to Brain

Pray4Mom · Regular Joined: 29 Aug 2007 Posts: 48

As an update to my email a couple weeks ago.. Mom is almost 73 and she was diagnosed with lung cancer recently.

Today her oncologist told my Mom that her lung cancer has metastized to the brain. The MRI shows a small circular lesion on her cerebellum. They want her to meet with a neurosurgeon to get this cancer removed... then 10 days of radiation to sterlize any other cancer cells from multiplying in her brain. Once healed, they want her to have another surgery to remove the lung cancer.

We are all in a state of shock. I'm not ready to lose my Mom.. (is there ever a right time?!)

Can anyone tell me what will happen next? Don't hold back. Any truth will help.

Bless you.
Annie
_________________
Katherine
California

DeeVQ · Regular Joined: 02 Aug 2007 Posts: 18

Hi Annie,

Unfortunately I do not have any information for you, I just read your post and wanted to offer you my thoughts and prayers. My Dad was also diagnosed with NSCLC 8 weeks ago and I understand what a dificult time this is. I too, posted on this site looking for answers and any information I could get my hands on. Do not worry if you do not get any responses to your posts, it may be just that people do not have the information you require or they might not know what to say. Sometimes I had to wait a week or two before I got a reply and it was mainly from someone with kind words to offer. Do not get disheartened, you will gain lots of valuable information from reading posts similar to your own. We are all in this together, all searching, all yearning for answers, for a cure, for a prognosis. But the fact is that everybodys situation is different. I have learnt from other peoples stories, NEVER to go by statistics, because every individual is exactly that...individual. I have read stories from people who have family members who have been told they have just weeks to live, and that was 3 or 4 years ago!
All I can offer you, is that you try to just spend as much time with your mother as you possibly can. Laugh, joke, care for her and make her comfortable. Because whether you have 5 days or 5 years, the most important thing is that you can look back and cherish all the memories you have.
I found that for the first month after Dads diagnosis, all I did was look up lung cancer on the internet, read books about lung cancer, and I became so wrapped up in trying to find out 'exactly how long does Dad have left?'.....and then I stopped.....
....And I thought to myself, oh my goodness. I am wasting all this time trying to find out how much time we have....when really I should be making the most of every second I have left with my Dad. I was in such a state worrying about what was going to happen that I made myself ill and I know my Dad would not want to see me like that.
Annie, you said the exact same thing that I keep saying to myself..."I am not ready". To be honest, I dont think either you or I will ever be ready. I keep saying, I am only 26. Who's going to give me away on my wedding day? Who will I call when I have a rotten day? Who will laugh at my corny jokes or hold me the way a father does? But I refuse to think like this anymore. I am breaking my heart in two. From now on I am going to make as many happy memories for myself and my Dad as I can. Even if its just drinking tea and chatting about the weather.....
In your previous post you said "I want to be fully prepared so that there are minimal surprises". Unfortunately, with my father things have been up one day and down the next. We just have to learn to live with this awful desease and bring comfort to eachother as best we can.
Im not sure if my post has helped. I just want you to know you are not alone and I pray to God that you can enjoy the time you have left with mother as hard as that may seem.
God Bless you Annie, and your family.
Dawn (Ireland)

PS;Here is a phrase I once heard someone say. I thought it might make you smile......
"Women are like teabags, when you put them in hot water, Just watch how strong they get!"....

In

Hi Annie,

Dawn is right. Alot like myself- read and follow, but don't have alot of information to help you. But i just wanted you to know- I am thinking of you and following your story.

I hope things get better- Take Care of yourself.

Inica
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

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Pray4Mom · Regular Joined: 29 Aug 2007 Posts: 48

[color=blue]Dawn and Inica and anyone else reading & praying about my Mom:

First, let me say, THANK you for responding, caring and sharing your stories.. May God bless you both with the same comfort and more you give to me and others.

Thank you for your kindness.. and reminder to cherish each moment with my Mom. YES! I so agree!

So do my brothers and sisters and extended family. I am the only one unmarried in my family so my Mom's diagnose makes it morre difficult - not to mention that my father has been estranged from 4 of us siblings for years (and though he is alive, he is very old and out of it). I have so many different emotions. I love my Mom.. we are close and yet we don't see eye to eye on many things (like where do we go from this life) but I know that every precious moment we have is important, especially now when she has her faculties and we can share stories, thoughts and love.

Mom has good days and bad days... it just seems like it has happened so quickly... so quickly.. yet we know it has been years in the making... years....

Dawn, we are alike, we really are - I have been gathering info, wanting knowledge so I can be prepared.. I want and need to figure out what is going on with this nasty and horrific disease.. YET when all is said and done... embracing each second with Mom is the most important... and asking questions, loving, serving and giving to my Mom is so very critical during this time....

Yes, you are right - every person is different.. I just DON'T WANT TO SEE MOM SUFFER. This is what hurts! I know we ALL die at some point... I just don't think one can EVER really be ready for it... It is so forever.

My Mom is amazing. She is so GIVING... she sacrificially gives... she is funny... my friends love her... she is artistic... dependable... strong, so strong... capable... we love to play games together - like upwards and scrabble... watch foreign movies together and share a good book... I love my Mom.. I really do... I just feel so sad to know that she has to go through this.

On top of this I AM ANGRY AT THE NICOTINE COMPANIES that make fortunes out of the creation of toxic and addictive cigarettes.

I, too, want my Mom to see me get married... I don't even have a fiance or boyfriend right now (and how has THAT happened or better said, not happened?!)

A couple years ago, I returned back home to pursue my MBA.... now I realize that I came home for so many other unforseen reasons... including another MAJOR family crisis that I can't go into...

THANKS for letting me ramble. It feels good to go somewhere to share my heart about this - a place where others know, understand and care.

THANK you for keeping my Mom in your prayers.. I pray for grace for all of us.. that we can all be strong, faith-filled and comforted during these present times...

Hugs,

Katherine (my real name)

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DeeVQ · Regular Joined: 02 Aug 2007 Posts: 18

Hi Pray4mom,
I just realised, reading over my reply that I sent you at 6.13 today that I called you Annie, but your name is in fact Katherine. Dont ask me where I got Annie from, as long as you know that I was talking to you.
I am so glad that you are finding comfort on this site. I find myself that its easier to talk to people who are going through similar situations.
My Dad has good days and bad days too. I think this is the way lung cancer works though. Theres no rules, it just takes over. But we can make things so much easier for ourselves and our loved ones by pledging to fight this monster. I truly believe in Mind over matter, fair enough thats a fairly light hearted expression for me to be using at a time like this but I think Im starting to train my brain to just be positive. Thats what this site does to you, but thats not a bad thing! My Dad does the same. He says he is going to fight this thing to the very end and I admire him for that. So long as he knows that when he's ready I will be ready. I will support my Dad in any decisions he makes. Whatever his wishes, I will be there standing by his side, encouraging him and shouting him on. Because he is my Dad and I will do anything in my power to make this time easier for him. We are in this together and everything will be ok.
I think the more I give people advice on this site, im stepping back and saying...' For goodness sakes Dawn, thats good advise, but would you ever practice what you preach?'....You see Im great at telling people what they should do and shouldnt do because its easier focussing on other peoples problems that our own isnt it?....
The thing with me is that I kept asking my Dads doctor 'please tell me how bad it is, what stage its at, how long do we have?' and then when he finally gave me some answers, I cried and cried and cried and said to my boyfriend 'why did he have to tell me? I dont want to know really'.....
You see we think we want to know, but in one way, ignorance is bliss because we can just live for the moment cant we?
Every time I talk to Dad I feel like I am storing every single thing he says just in case its near the end. Ive even started a journal.
You will find that your emotions will be all over the place Katherine 'cause I know mine have. One minute myself and Dad are laughing and then we start crying. I think its all part of the process.
Its good to laugh though. Its the best medicine.
Post me anytime you feel like a ramble or if you have any news on your mothers health. If you read my previous posts you will learn about my own journey so far. Its still very raw and Im still trying to get my head around things but this site is the business. Seriously.
Any news on your mothers surgery and how are her swolen ankles?
Dawn x

God Bless,
Dawn...x

Pray4Mom · Regular Joined: 29 Aug 2007 Posts: 48

Dawn, you are a JEWEL! Thanks for making me smile (and then cry at the same time!). I SO understand what you are saying!!!!!!!!!! Just yesterday I asked the oncologist, after he told us about the NSCLC and mets to brain, okay, so best case scenario is that the surgery/radiation will remove the tumors... what is worst case? Dead silence.. mom blurted out that she does not want to know... But I do.. I want to know what the time is... However, I acquiesced to Mom and we glossed that one over.. because we know worst case and expected case is - we just don't know when...

I love Ireland by the way - where are you? I went to Dublin a couple of years ago for a business trip - and my sister and her husband live in England.. This is especially difficult for her because she is so far away. Thankfully, they were here on holiday when Mom was diagnosed... will be here for Thanksgiving and again in March...

I am grateful for this site - ability to vent and encourage.. and obtain comfort...

Blessings - Katherine

DeeVQ · Regular Joined: 02 Aug 2007 Posts: 18

Your Welcome Katherine,
I find it a comfort when someone understands what Im saying! I live in Wexford, in the sunny south east so they say, although we have just had the worst summer ever, rained for 50 days in a row between end of may and beginning of July! Global warming so they say.
Anyway Katherine, it is actually 16;23 here now so I am finished work in 6 minutes. Therefore I will talk to you tomorrow. Im heading over to see my Dad in 13 days(he lives in England)....cant wait to see him and hold him and see his big smile! Its hard trying to get over to see Dad as often as Id like, between work and paying a mortgage. I went over for 9 days the week after he was diagnosed, and again in the middle of August. He is hoping to come over to see my new house maybe in October. I only moved in 2 weeks ago. Its a very stressful time for me I must say, but things like this really put things into perspective. Like its only bricks and cement at the end of the day. Anyway so thats that, Im counting the days to see my Dad, he's amazing. An absolute legend. Of course Id be bias anyway, but he truly is a lovely lovely man. Im so glad he's my Dad, Im so proud of him.
I enjoyed our chat, thanks for listening katherine, I hope your day goes fast for you.......
Big Hug,
Dawn...

Luvmydaddy

Katherine,

My father seems to be in the same situation as your mom. He is 62 and agreed yesterday to go for the brain surgery. It is scheduled for tomorrow at 8am. The doctors really feel this is our best bet. It has started to really effect the left side of his body, and the pain due to swelling has been horrible. It will be difficult to be in the waiting room tomorrow. My brother, mom and I are trying to stay strong and be confident that we are doing the right thing. It has been an incredibly difficult month. We are praying for good news! And I will pray for your mom and your family!!
_________________
**Stef**

Pray4Mom · Regular Joined: 29 Aug 2007 Posts: 48

Stef, I will pray for your dad... I am so sorry.. You and your family are going before me. Thank you for your sweet post... I appreciate this so much...
_________________
Katherine
California

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1126

Dawn said: For goodness sakes Dawn, thats good advise, but would you ever practice what you preach?'....You see Im great at telling people what they should do and shouldnt do....,

To everyone on this thread,

I have read and loved every bit of what you posted. With the above quote, I think Dawn must be the "sister" I never had! Very Happy

Hang in there everyone, it is a long and hard struggle for your loved ones. Tears and laughter come all too easily to me too, but I really try to maintain hope and a good sense of humor with my husband. It is good to share your emotions with others who are living this "new" life. I too have a daughter who knows her Dad won't be there to walk her down the aisle and she's being a real stinker about me taking care of myself so she has at least "one parent" at her imaginary "future" wedding! Wink

I don't have anything too profound to offer, but want you all to know I'm thinking of you and hoping for the best.

To Annie: As far as surgery to the brain and lung -- that is incredible! It sounds like your doctor is really thinking outside of the box with some pretty aggressive surgical intervention. That is a GOOD thing. Surgery is always best if it can be done.

Hugs to all,
PBJ

Pray4Mom · Regular Joined: 29 Aug 2007 Posts: 48

Thanks to everyone who has replied and shared on this thread; it means SO much to me! I so appreciate the honesty and heart felt comments and sharing. I need this right now.

I 'm a bit overwhelmed right now with Mom's still not yet started treatment plan - but am hopeful that it will start soon. Thanks for your prayers and sharing your real stories and updates with your loved ones; I am interested in hearing about them.

Blessings - Katherine
_________________
Katherine
California

Pray4Mom · Regular Joined: 29 Aug 2007 Posts: 48

Just wanted to give an update about my Mom for her lung cancer with mets to brain.

Tomorrow morning we go to UCSF to have gamma-knife radiosurgery for the cancer in her brain. The Chief of Neurology recommended this because her MRI shows a cloudy mass on the periphery of the cancer in the brain. He says this means that there is swelling - which means that there is a high probability that the brain cancer has spread to other parts of her brain and is just too tiny to see at this point. So first thing tomorrow she will have another MRI with a greater amount of dye to see if there are more cancerous tumors in her brain.

She will have gamma-knife surgery tomorrow. They will then monitor her brain with MRI scans every 2 months.. the doctor said she may lose some cognitive abilities.. ... I wonder how much of her will be taken tomorrow? It just hurts me that she is going through this!

Early next week, chemo starts. She will have chemo for three months to decrease tumor size on her lung and then surgery to remove it.

Her ankles are swollen, knees hurt.. doctors think both will lessen after treatment.. I hope so..

How is is that cancer happens seemingly so quickly? Rhetorical question... It is such a nasty, nasty disease and breaks my heart that she has to go through this... Just breaks my heart!

Thanks for listening, caring and sympathizing.

My heart and prayers are with each of you and your loved ones on this forum.
_________________
Katherine
California

brainman

Katherine, I have been reading about your mother's cancer since you first posted about it. I am so sorry that it has spread to her brain. I know that the gamma-knife is the way to go as long as the MRI shows that it is still not grown too much. Most people have very little problems with the gamma-knife other than feeling a little tired after. By the way, the radiation will keep working even after the treatment ends so I don't think you will see any immediate changes. That is why they will wait for 2 months before doing an MRI. Is she on steroids for the swelling? If not, she probably will be after tomorrow.

Your mother is in my thoughts and prayers.
_________________
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/

Pray4Mom · Regular Joined: 29 Aug 2007 Posts: 48

Thanks, Jim, for the heads up about expected treatment results. Mom is not yet on steroids.... Mom asked the neurosurgeon to tinker with her brain so that she could finally carry a tune! She has an amazing sense of humor, even in an hour of darkness. Thanks for your response.. and, always, prayers...
_________________
Katherine
California

brainman

The steroids can be a mixed blessing. It might make her want to eat more. But it can also impact her immunity.

Katherine, your mother sounds like my mother Very Happy

. She died in 1998 of a brain cancer only 2 months after being diagnosed. But I can hear her asking her doctors:

Mom: Will I be able to play the violin after surgery?
MD: Sure. After a few days you can play your violin.
Mom: Good. I always wanted to play violin but never could.

Laughter is such good medicine Smile

. Although the MRI results showed that her cancer was inoperable, her sense of humor kept her and all of us mentally healthy. Well... sort of Laughing

_________________
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/

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