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OMG Brain mets!

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

What a crazy day I had, I had brain MRI by 11:30. At 2:30 my nurse calls with bad news that I have multiple brain mets and by 3:15 I had emergency appointment with the radiologist, got fitted with helmet, and I will start whole brain radiation tomorrow! I actually went to work after all this (I have small clinical social work practice)

Wow, how my life changed within a few hours. Don't believe that upsc doesn't go to the brain. My oncologist told me awhile ago that it goes to lungs before brain. In my case the fluid around heart & lungs both showed cancer in January so that's how it ended up in brain.

The plan is to get 20 radiation treatments and stop chemo for now. My husband will drive me everywhere because of risk of seizures. Thank God for my wonderful husband! I will take decadron daily to control brain swelling.

i discussed quality of life. Doctor said that there is no choice about treatment-without it I would have stroke. He seems to think I will have decent quality of life but may have some shortterm memory loss. 

So it's one day at a time- one hour at a time.  God bless all of you. I appreciate all your prayers as always,

love, Mary Ann

janh_in_ontario
Posts: 110
Joined: Sep 2010

Maryann

I just told you that NED was waiting for you and within minutes you posted this - I am sorry if I hurt you with that post. I really thought you were on the way out of this mess.

I will keep you and your husband in my prayers. The Bible says He will not give us more than we can bear but I have to wonder just what He is thinking sometimes.

Stay positive and do whatever helps you get through this.

Hugs and love

 

JanH

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Don't worry Jan. i appreciate all your support & good wishes. Thanks so much for prayers!

 

 

Alexandra's picture
Alexandra
Posts: 1264
Joined: Jul 2012

I can't believe how calm, rational and positive you are after getting the news today!

I have no doubt that brain mets is only a temporary setback ; you will get through radiation and come out a winner and into a long remission.

In lieu of prayers - Sending best wishes, virtual hugs and bursts of positive energy your way - Alexandra

NorahS
Posts: 93
Joined: Dec 2012

...to have to assimilate such news within hours...it must have been so shocking to you and your dear hubby.

However, you and dear Rudy are equal to the challenges in the days ahead.

Think positive and carry on, and always, always remember we love ya here. Don't ever forget that. 

 

beila
Posts: 97
Joined: Sep 2012

Mary Ann

You are so brave and strong

I cant believe you went to work today!!!!!Surprised

What helps me is positive role models...eg Lance Armstrong, when he had his cancer had brain mets....and notwithstanding his steroid issues, look at him in the past many years!

I also have a friend  of my friends in Montreal who has been valiantly battling many many years of metastatic breast cancer, including brain mets, and also views all this as a "chronic disease"

 

Even though the brain, as Woody Allen describes it, is his "second favourite organ", it is still just an organ, and will be given medical treatment as such

 

 

 

 

 

 

 

 

Today Obama gave a speech in the cathedral in Boston:

Started with:

"Scripture tells us to RUN WITH ENDURANCE THE RACE THAT IS SET BEFORE US"

 

Run with endurance, Mary Ann, as I know you have been.

but take it one day at a time,

and try to get as much pleasure as you can..the big things and little things in your life...every day

 

Love,

Beila

 

susangr
Posts: 63
Joined: Oct 2010

Hard to even know what to say about such news! Sending positive thoughts and cyber hugs to you and your husband.  Hoping that this new treatment plan will successfully treat this recurrence. We know from others that they have had some very good results.  It's your turn for some good news soon.   You have and continue to be such a positive caring person.  Hugs. Sincerely Susan

Sisters three's picture
Sisters three
Posts: 157
Joined: Nov 2012

He has been annoying to you for far to long! Beat him to submission like you have done many a time!

TAyers's picture
TAyers
Posts: 47
Joined: Aug 2012

Mary Ann,

I am so glad they referred you to have heart and brain testing, and that they are acting so promptly. Did you have symptoms that gave them reasoning for referrals on the brain? God has a mysterious way of looking out after us. I will continue to pray for you. This posting helps all of us to be aware. Thank you, Tami

 

Cindy Bear
Posts: 564
Joined: Jul 2009

Mary Ann, I am sorry to hear this, not the news you or anyone else wanted or expected to hear. I am struck with your courage, your can do attitude, your calm and your strength. You are a special lady. I will be praying and holding you close in my thoughts. You might want to check out Leesag posts on Ovarian board. She had brain mets, had WBR and is doing quite well..

Big hugs,

Cindy

Cindy Bear
Posts: 564
Joined: Jul 2009

double post...

 

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I as well am amazed how strong you're with the latest news.  Surely it's a setback in your mind, but your determination as I'm reading in your writing tells me you will not let Chester win!!!

I'll still continue to pray for your strength and for Rudy to be a great resource to guide you.  

 

God Bless You dear friend~~~Kiss

Jan

Kaleena's picture
Kaleena
Posts: 1213
Joined: Nov 2009

Mary Ann:

So sorry to hear that you have to go through this!    Geesh!   But like the others said, you go to work the day you find out.  Wow.   Strenghth that will keep you going and a loving husband beside you as well.  I will keep you all in my prayers.

My best to you.   ((((Hugs))))

Kathy

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

It was not as bad as radiation I had on my neck in 2010. I was on open table with my Darth Vader mask on. Machine flashed blue light from above and rotated to each side. Done within 10 min.

another experience I never wished I had!

 

HellieC's picture
HellieC
Posts: 458
Joined: Nov 2010

Stunned to hear this latest development Mary Ann.  Things seemed to be going so well with numbers dropping and it looked as if Chester was on the run, only to pop up somewhere else.  Damn him! 

You are an amazingly strong lady to carry on and work through all this.  I am so pleased the first session of radiotherapy was manageable.  One step at a time, one hour at a time, one day at a time.  You will get there.

Chester really shouldn't have picked a fight with such a lady.

Helen 

sunflash's picture
sunflash
Posts: 158
Joined: Aug 2011

Darn it Maryann, hate to hear this news!

But I agree with the others that your strength and courage in the face of this turn of events is truly amazing.

Going to work the same day you got the news.......incredibly strong is what you are!

Glad you're starting treatment to kick Chester to the curb.......he's been freeloading too long!!

Big hugs from me to you!

Double Whammy's picture
Double Whammy
Posts: 2334
Joined: Jun 2010

I can only echo what everyone else has said.  Sending lots and lots of prayers and good mojo.

Hugs,

Suzanne

nancy9
Posts: 35
Joined: Feb 2013

You are one tuff cookie!  Stay strong and know that we are all behind you.

survivingsu's picture
survivingsu
Posts: 37
Joined: Apr 2013

Hi brave one,

How kind you are to share your story & adventures with others.  I am sending all good wishes that our current times with new technology will pay off big time for you!  The Darth Vader mask must have been a bit scary.  I bet those 10 minutes were the longest 10 minutes ever!

Keep up kicking Chester,

Susan

laura25's picture
laura25
Posts: 160
Joined: Mar 2011

Mary Ann my heart goes out to you and Rudy.  You are strong, courageous and determined.  You know what your treatment
plan is.  You will continue to put one foot in front of the other and persevere. Your picture is in the dictionary when you look up warrior.
I'm relieved to read all went well for your first treatment. 

Please post when you can.
xoxo

LindaFF
Posts: 10
Joined: Sep 2009

I haven't checked in lately but so not happy to hear you have another challenge to face.  You will do this with your faith& courage.  I will pray for you each day.   You have a lot of determination and grace.  You will get thru this too.  Best to you and Rudy.

Ro10's picture
Ro10
Posts: 1474
Joined: Jan 2009

My heart,too breaks for you hearing about your brain metastasis.  How can things change so quickly.  You have been through so much already.  I am happy you got a plan in place so quickly and you first treatment went well for you.  I hope the rest of the radiation treatments go as well.

we both started with UPSc stage 3-C at about the same time.  Our journeys have been so different.  You have been a great inspiration for me and many others.  You have done all you can to fight "Chester".  I am so happy to hear that you still have the fight in you.

Continue to take it one day at a time and enjoy all that you can.  You are my special friend.  In peace and caring.  You and Rudy remain in my thoughts and prayers.

Stabler
Posts: 49
Joined: Feb 2013

So sorry to hear the news.  My thoughts and prayers are with you. 

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

We are in South Africa for r&R after clean PET, but could not stay away from OUR site!

So sad to hear your traumatic day, but so glad to hear you are dusting yourself off and starting all over again!

All the best, Warmest ((((hugs)))) to you and Rudy, good ole Sherrif is sending Chester alimping home!

Sara

minniejan
Posts: 88
Joined: Dec 2010

I too am thinking of you and praying.  I lurk on this site, sometimes more often than others, and try to keep up with everyone from the last couple of years, and remember some of the cyber help you gave me and others in the past, wish there were more we could do.  Please know we are all pulling for you!  MinnieJan

 

nempark
Posts: 596
Joined: Apr 2010

WOW !!!!!!!!!Never thought I would hear you mention something from the Scriptures, Quoting Obama's opening speech, " RUNNING THE RACE WITH ENDURANCE, since you mentioned before that you do not believe.  Anyway, It is commendable that you can reiterate this for Daisy.  Hope you are doing better.

nempark
Posts: 596
Joined: Apr 2010

My chest hurts just thinking of this ugly disease. Continue the race of endurance.

 

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Continue to get daily radiation. I will see rad onc this week. Just read scary stuff on brain cancer site.

i'm preparing to die. do you ladies want to hear the journey? 

Thanks for you continuing love & concern.

mary Ann

NorahS
Posts: 93
Joined: Dec 2012

...but it is your journey and they are your feelings. 

I'm holding out hope that your rad onc has some good news for you this week.

And yes, we want to hear from you as much as you are able to get here to tell us. On this site, we support each other always.

Sending much hope and love your way....  

 

 

 

 

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

So much about life is scary.  I'm right with you thru this crap and hoping you can keep up the positive thoughts and endurance.  I'd love to suggest you don't read things about the cancer, but then  again I know I'd be doing the same things....humans are so curious.

What are you thinking about your journey????  Unload .... we're all here for you.

Love always,

Jan

 

survivingsu's picture
survivingsu
Posts: 37
Joined: Apr 2013

I echoe what NoraS and Jan wrote.  I'm thinking of you & have my very best wishes for you.  Please know you are not alone, you have a whole lot of friends here.  And yes, I'd stop looking up info on the Internet - it's out-dated and doesn't reflect latest technology or individuality. 

Keep kicking chester,

Susan

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

Maryanne, I hope the radiation buys you more quality time but no matter what, do not even think about not keeping us as part of your journey.  You have given so much of yourself to others now you must allow us to help support you.  Obviously from all the responses your posts generate, you must know how loved you are.  I think about you so much.  I hope you can feel it.

txtrisha55's picture
txtrisha55
Posts: 430
Joined: Apr 2011

I have not posted in a while but had too.  This so hurts to hear your news.  Praying for you and Rudy to get through this time. Hopefully the onc drs will find something to stop Chester for good.  This site is for all news and journeys the great, the good and the not so good.  The ladies on here are fantasic for all news.  We are our on little family and weep for joy and cry the tears of sadness when we need to.  This is a journey that we all have to take sometime but I pray that yours takes a longer one so that you can remain with us.  Praying for the right treatment and for continued strength for you.  May God Bless you. trish

Ro10's picture
Ro10
Posts: 1474
Joined: Jan 2009

Glad you are 30% done with your radiation.  Glad you are tolerating them okay.  I continue to pray that they are reducing your tumors.

i am so sorry that you are preparing "to die".  That really saddens me.  I pray that you will live each day to the fullest and enjoy the time you have With Rudy.  Of course we want to hear about your journey.  I hope we can encourage you along your journey.  You continue to be an inspiration for us.   Please share your feelings with us, too.  I know this has to be very difficult for you.

i hope the radiation onocologist has some encouraging news for you.  Hang in there.  In peace and caring.

sunflash's picture
sunflash
Posts: 158
Joined: Aug 2011

My dear Mary Ann,

I'm so sad to read your post. You always have and will always remain a role model of mine since starting on this journey.

I know life isn't fair, I get that, but somehow this brings the unfairness home to me even more. I hope you know and feel all the love and support we have for you here.

Please continue to come here and let us help you through this.......we want to share our love for you in any way we can. I wish I could reach through this computer screen and give you a big hug and physically be there for you. But since I can't, I want you to know I'm here the best and only way I can.

You're in my prayers and will continue to be so. Please let us know how we can help.

Sending all my love...........

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I'm blessed to have each of you. Thank you so much. I will continue the journey and pray God gives me some relief. Good news is such a welcome gift for all of us.

I see palliative care team tomorrow and will find out why they made me PRN at last visit- after I decided to discontinue antidepressant that has fatigue as side effect. I wonder if I pissed someone off. But Onc said "no way" and I'll discuss tomorrow. What a way to treat a terminally ill patient! I was too shocked to address at the time.

then Wed I see rad Onc with more questions. Why 20 treatments vs. 15. Etc.

Mary Ann

Sisters three's picture
Sisters three
Posts: 157
Joined: Nov 2012

I wish I had all the right words that could possibly help this situation but find myself falling way short.

Your loved and have so many people who wish they could take this from you. Hang in there and keep reaching out to the team. 

I just looked up PRN and it means take as needed, maybe there isn't an issue there.

I hope you get your walk in today, maybe Rudy can go with you.

 

Lisa

Sisters three's picture
Sisters three
Posts: 157
Joined: Nov 2012

She comes with a sterling recommendation!

laura25's picture
laura25
Posts: 160
Joined: Mar 2011

Please after all you have done for me and the other women on this site, don't stop writing because you don't think we want to hear.  If I could come through the screen and hug you I would.  

Stay strong Mary Ann,  we all love you so much!

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

Dear Mary Ann,

I can’t help it, but to feel sad. God will guide you through the journey we all go through eventually. I would like to hear about your journey. {{{{HUGS}}}}}

 

HellieC's picture
HellieC
Posts: 458
Joined: Nov 2010

There's not much I can add to what the other ladies have said, Mary Ann, other than that I am praying for you on your journey.  This is a tough road with many twists and turns.  I hope you reach an straight part soon and the radiation shrinks those mets and gets you some quality of life back.

We've all shared our highs and lows on this board and I would like to continue to share your journey with you, if you feel it's right for you.  Keep up the fight, Mary Ann, we're all with you.

Kindest wishes
Helen

Shell bug's picture
Shell bug
Posts: 68
Joined: Nov 2011

I am so sad !!! It took me a few days to reply. Through my treatment you were my beacon of light. I think of FL every time I see you post. My sister lives in Jax and I have only good thoughts about FL. I believe you said your husband works for Hospice. I volunteered during college. Little did I know I was preparing for this...

anyway, I thank you for everything and I really believe things will be okay.

take care of yourself and know you are an inspiration.

 

Rachelle

Cindy Bear
Posts: 564
Joined: Jul 2009

and hoping and sending big cyber hugs your way. Yes we want to be with you on this journey , every step of the way. 

Double Whammy's picture
Double Whammy
Posts: 2334
Joined: Jun 2010

through whatever you have ahead of you.  So yes, plese keep us updated on your journey, through all of the trials and tribulations, good news and bad news.  Thank you for considering us.

Suzanne

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

Hope it's going well.  If you do have short term memory loss, don't forget us.  Rudy,remind her we're here. (dark humor)

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