Brain mets: my options now...

Meeting with co-team leaders of the CyberKnife Center (neurologist and rad onc) consenses is: there are ten new lesions showing, all but one are rather small/not critical areas. The one on my brainstem/pons is most likely causing my 24/7 dizziness. (Got a scrip to see if it helps; an antihistimine)

Rads to pons and cerebellum again carry a high likelihood of causing necrosis from cumulative rads to that area. Necrosis would cause a lot of permanent side effects. They don't want to do it. Surgery to pons not an option. If it continues to grow at rate between the last two scans it would only take a few months of that to become.....well. My worst nightmare. Mental ok, but unable to function.

WBR was discussed a bit, but most strongly advised to get a consult for the procedure instead of anymore focalized rads. iMRT was also suggested as a possibility. Need consult for that somewhere to see if they might be willing to undertake the job.

It was determined that all the lesions I've had treated did respond well to being radiated ie. they didn't like it one little bit :o)

For now, we are all hoping that the lessened dizziness I have experienced is from a response to the Temodar/Xeloda cocktail I'm on. (I've been keeping track) And also will proceed under my med oncs care, getting a new scan after the second dose/scedule to see if we can actually SEE response. In between now and then? Don't want to think about it right now. So that's it. Today.

ok, I am trying to figure out how to get a short trip in while I still can.......

love and hugs
pattyz

[StephN]

Seems they want to proceed cautiously - which DOES give a chance to see what the Tem/Xel are doing. And I do SO hope that there really IS some improvement happening. ;)

Where do you want to go?? What would you like to see??

There are a lot of really amazing and exhilerating things to see in this world.

Patty, I am with you all the way through the labyrinth of options and non-options. How exhausting to have so many fragmented images of the possibilities. My worst nightmare is not my death but not having a picture of when and how the herniation will start and how my husband will cope in those next minutes, hours. This is hardly the time for answering your question but I guess you were trying to help me change my focus by asking if I have a pet. That is a long story with a "sadly, no not at the moment," ending. How can I change your focus for a little while? A trip. I admire you for that. I get torn between wanting to "nest" and wanting to fly. My last trip to Toronto to see my daughters and my father was in April and I had to say at that time it would be my last because it took so much energy. It was worth it though. I thought I would save them three tickets to come here but not long afterwards both my daughters did come over here anyway and that was superb. They are so solid and supportive; they are not fearful in the usual selfish way. They firmly believe that our link will never be lost or broken and that allows them to relate to me in a beautiful way which recognizes the firm gentle hand of nature taking its course. We have to die of something but as our GP says to those who complain of the disabilities which come with old age, "At least you made it to old age."

What do I feel I am going to miss out on most? Nothing really. I have had a really good life so full of love and adventure and growth. Floating and snorkelling with my husband in the warm waters of Barbados where we came from in 2002. We have been back, most recently in March of this year. Now tell us, what are the factors you use in choosing a destination. Will you go alone? What about insurance and researching care options should things go badly while you are away from home. Eccles (My name is Erika but was called Eccles by my parents when I was a toddler) It is sort of appropriate now because the hospital where I had the consultation about the prognosis is in an area here in Manchester UK called Eccles.

All I can add is that I wish you courageous people the very best and will be praying for you. "Eccles", you sound like such a wise person, someone I would like to spend an hour or so visiting with! I can really relate to your "wanting to nest and wanting to fly"! God bless you both! Hugs, Tricia

How scary this must be for you. You have always put much thought into your treatment and I admire how you take charge of your health and health care. I believe that this combo is working for you...the fact that the dizziness has subsided is a good sign. Please keep us posted.
Regards,
Celina

Patty, I admire your courage and your willingness to share your story. My thoughts are with you and hope that your next scans show improvement.
Best wishes,
Barbara H.

Thanks Steph...

the trip is to one of my favorite places. With some of my favorite people. During my favorite time of yr. Fall. Won't be til the first wk of Oct. because of...thing. It is also the place my ashes will go, but want to see it once more with these eyes :o) Renting an RV so that I can lay down if needed, in some sort of comfort at that.

xoxoxpatty

Thanks once again, I do know you 'get it', too.

Well, planning this trip will give me a different focus for awhile. I already put all our photos in albums/in order. And all 'end-of-road' plans etc. have been made.

Trip, as I said to Steph, is to to where my ashes will go. But, I've only been there in fact once before. Now want to see it again, before 'then'. There is a large herd of buffalo there which are my special loves. It will only be for about 9 days, in between treatments. I hope; at moment planning it for early Oct.

Our own 'daughter', ten yr. old 'rotten rottie', Zelda will go with us. She makes us laugh, worry, and all the other things that keep one involved on many levels.

I personally have two grown daughters. One of whom will hopefully be going on trip with us ( me and my mate). They try to keep a 'stiff upper' and be supportive. But would rather not hear the scarey details I do believe. So this time, I am glossing over. For now.

And your past adventures! How very wonderful.

I felt so good hearing of your daughters, their visit with you, their ways and feelings/beliefs. I can tell you are proud and get much joy from having them in your life.

I want to be able to communicate until the end, you know. And hug. Without any time between not being able to 'wipe' for myself and the last breath. Too vain , even now, I expect.

morexoxoxoxpatty

Tricia, Celina and Barbara,

:o) Thank you. So much. (This goes to any and all others who may just be thinking good thoughts.) This kind of 'good energy' that goes out there, available at a nano second for when needed is a great gift.

sending hugs back to you,
pattyz xoxoxox

Eccles: I have one daughter (26) and a son (21). The most beautiful name I could think of for my daugher was Erika....what a treat to read your real name.

I enjoy your posts and your outlook. Be well.

Patty I wish you a wonderful trip filled with serenity. You have so much courage and strength.

Patty, I wish you (in case you don´t see my mail) a wonderful trip and I hope you can find some serenity. We´ll be waiting for you....

Leticia

Patty, your discussion of your trip reminds me of a poem by Tennyson that my third graders recited for their parents at our biography celebration at the end of the year. They read a biography, dressed as the character, and presented a speech as the character. Ulysses reminded them of their characters, because of his desire to take another journey, continue learning, and to never give up. This poem reminds me of your courage and also the courage of others that post on this site.
For you, Patty:

Selections from ULYSSES
by Alfred Lord Tennyson

I am become a name;
For always roaming with a hungry heart
Much have I seen and known; cities of men
And manners, climates, councils, governments
Myself not least, honour’d of them all;
And drunk delight of battle with my peers,
Far on the ringing plains of windy Troy.
I am a part of all that I have met;
Yet all experience is an arch wherethro’
Gleams that untravell’d world whose margin fades
For ever and forever when I move
How dull it is to pause, to make an end
To rust unburnish’d, not to shine in use!
As tho’ to breathe were life! Life piled on life
Were all too little, and of one to me
Little remains: but every hour is saved
From that eternal silence, something more,
A bringer of new things; and vile it were
For some three suns to store and hoard myself,
And this gray spirit yearning in desire
to follow knowledge like a sinking star,
Beyond the utmost bound of human thought.

Come, my friends
“Tis not too late to seek a newer world.
Push off, and sitting well in order smite
The sounding furrows; for my purpose holds
To sail beyond the sunset, and the baths
Of all the western stars, until I die.
It may be that the gulfs will wash us down:
It may be we shall touch the Happy Isles,
and see the great Achilles, whom we knew.
Tho’ much is taken, much abides; and tho’
We are not now that strength which in old days
Moved earth and heaven, that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.

[Lolly]

Patty, I've been out of town for a few days with no internet, so am just catching up on your situation...whew, you are such a realist and your reports of your options and treatment decisions are so valuable to all of us because who knows when we'll need this resource to grab onto for a lifeline if our next MRI's aren't the best news. I am keeping you in my prayers, that the combo is going to help. Much love and hugs to you tonight, my friend.

<3,
Lolly

Thank you, Lolly... (and Vi, Leticia),

"Realist". I've been thinking of that more of late. It has bothered me for some time that my emotions appear to have 'flattened' over the past few years. And I don't like it. But I wouldn't want to be a 'loose cannon' emotionally, either. very big <<<SIGH>>> here.

It makes me feel like I don't care and afraid others will feel that, too. Don't know if it is from rads, progressions in brain, or the tremendous amount of loss I've witnessed through these forums and some of my own.

On the other hand, I do feel it's important to share these experiences so that maybe one other person will gain some insight/ feel not so alone/ or help in some small way.

I welcome the prayers and loving support, Lolly.
xoxoxpattyz