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Update: 65% through brain radiation

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

8 more RT to go. But last week rad-Onc really demanded that I return to chemo immediately. Docs consulted & I will get just carboplatin weekly starting tomorrow. I had both in 2010 antolerate rated well so hopeful for that again. Rad said if he thought I would live just 3 months he would not put me through the whole brain radiation. That sounds good to me. 

I have bloating in abdomen. Not sure what it is. Maybe combo of acities and fat. I never had abdominal fat. I'll see rad Wed and gyn-Onc a week later. I'm taking lasix which seems to be helping some. My appetite is good and my weary self walked 1.4 miles today. Now to the couch!

getting business done- cars retitled to both of us, preparing AFLAC claim long overdo, purging paper and ridiculous amount of stuff. Slowly chipping away.

worst thing is saying goodbye to loved ones. I have lots of German family that I want to video chat with soon. I get tearful just thinking about this.

i will continue sharing good bad & ugly. I am virtually pain free. Just take Aleve for low bak pain & sleep with aid of Ativan.

Blessings to all, Mary Ann

ConnieSW's picture
ConnieSW
Posts: 542
Joined: Jun 2012

I.e.the rad/onc comment.  He's doing his part and you are persevering at yours.  Time is all we have and you are making the most of yours.  I consider you my walking buddy because I think about you as I take my daily walks.  Bet you never thought you'd be walking the streets of a small city in NY's North Country and hiking (no climbing-knees aren't up to that) in the Adirondacks.

Kathy G.'s picture
Kathy G.
Posts: 116
Joined: Dec 2012

Mary Ann,

Glad to hear you are over halfway through your radiation treatments and you should be able to tolerate the chemo based on past experience...

I feel your pain in making preparations no one wants to have to make, but I think you sharing this journey will serve so many of us well now or in the future. I was incredibly impressed with you talking about this as well as taking over a mile walk today with all you have going on! I turned to my 31 year old daughter after reading your post and shared a little of your story pointing out that if you are able to accomplish what you are doing with the radiation treatment, the emotional stress, etc. that all of us could well learn a lesson from you.

You have always been a great 'teacher' and leader on this site from what I have read in my few short months here.

My thoughts and prayers are with you...my laptop has been down so I have been lurking more than writing on my old 2000 computer...it is as slow as dial-up so posting is a LONG process, but I wanted you to at least know how I felt about your post today.

God bless you.

Kathy

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

I appreciate your comments. But Connie I have walked the NY North Country! Lived in Finger Lakes for 22 years. Nearly very summer enjoyed vacationing at Lewey Lake north of Speculator. Hiked Snowy Mtn. Loved hiking in Adirondacks. Where do you live- anywhere near there?

Mary Ann

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

Hola Mary Ann,

I am so glad to hear you are not in pain. I also think of you every day when I take my walk after dinner. Thank you for haring your journey with us. You are in my prayers.

txtrisha55's picture
txtrisha55
Posts: 423
Joined: Apr 2011

Glad to hear you are not in pain.  I know that is what bothers people the most and can make people give up.  Praying for you and family every day.  Hopefully something will help to keep you here as long as you want and need to be here.  Thanks for sharing your journey with us.  trish

Cindy Bear
Posts: 560
Joined: Jul 2009

was hoping you would check in. So glad to hear you have little pain and that your appetite is good, and you are able to sleep. I too, find comfort in the fact that they wouldn't be doing treatment if they didn't think it was worthwhile.

Sending big hugs your way,

 

Cindy

soromer
Posts: 130
Joined: Mar 2011

Dear Mary Ann,

You've been through so much these past few months! First the tamponade, and now this....

There's a woman in my real-life support group who is in a similar position as you, though she had lung cancer to start. She had a milder case of the tamponade, and now she's dealing with brain mets. (Yes, her lung cancer was at Stage IV when she was diagnosed three years ago.)

The gamma knife treatment she had recently may have worked; it's too soon to tell. Your radiation may buy you some time, too, especially with the chemo.

It's up to you to figure out when you have had enough and then choose to have no more treatments. I hope for your sake and that of those who love you best that your current treatments show good results, so you don't have to make that decision soon. 

It is probably true that your docs will be able to give you a good understanding of your options. On the other hand--through my other online site I have heard of many people deemed terminal who somehow came back. It is always ultimately a mystery when our time is up.

May you have moments of joy and pleasure every day of your life, Mary Ann. My thoughts are with you.

soromer/Kate

 

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

You're always in my thoughts and as with others, happy to hear the pain is managed.  Life sure can put us thru the ringer, but you always seem to come up and continue on.  The idea of your continuing the walking is yet another amazement to me, always keepin' on!!!

Big cyber hugs and keep the faith, God has a plan for you~

Jan

   

sunflash's picture
sunflash
Posts: 146
Joined: Aug 2011

So glad to hear you're tolerating treatment. You sound like you have a very caring and proactive doctor.

Sending more hugs and prayers your way!

NorahS
Posts: 93
Joined: Dec 2012

...but I did want to say that there are some nice little pockets of positives in your post.  I also see that you are pacing yourself and I'm encouraged by that.

Sending many good thoughts out to you and Rudy...  

 

 

 

HellieC
Posts: 428
Joined: Nov 2010

Sounds like things are going as well as they can with the treatments and you may be slowing the beast or at least avoiding symptoms, Mary Ann.  I agree with your rad - I am sure that they wouldn't  put you through whole brain radiation if it wasn't going to buy some decent quality time for you?  I hope the bloating can be treated as that doesn't sound much fun.

Like you, I have spent some time getting business done - when they told me I was incurable, it seemed the right thing to do - probably very premature in my case, as I don't yet have any major organ involvement (just pelvic sidewall at the moment) and they can't give me a timescale.  But I was always the sort of person who was one step ahead of the game! And it gives me a strange sense of calm to know that I have planned everything for when the time comes. 

Please continue to share with us whenever you feel able.  We are all on a long road and sometimes it helps to have some walking buddies alongside.

Kindest wishes
Helen x

 

laura25's picture
laura25
Posts: 157
Joined: Mar 2011

Hi Mary Ann,

Thank you for being so brave and sharing your journey.  I say my prayers everynight and you are in them.   I'm happy you are without pain and able to enjoy your walks... you go girl!!! 

Please write when you can, I always look forward to your posts.

Much Love and blessings,

Laura

RoseyR
Posts: 462
Joined: Feb 2011

 

Daisy,

Have been off the boards for a few months so didn't realize you'd had a recurrence.

Just know we're all rooting for you; you've already shown great spirit and fortitude, so if anyone can do well despite this recurrence, it's YOU, Daisy.  So glad to hear from your later post that you're not in much pain.

 

Love,

Rosey

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