Brain hospice time line

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Brain hospice time line

by TonyNJennifer on Sun Jan 02, 2011 12:16 AM

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How quickly can change occur? How accurate is the time line? Could it really be that close?

As if over night, it seems as if Jennifer is showing most symptons listed under the BrainHospice.com time line describing just weeks before passing! Just today she detailed how her right arm & leg felt weak and numb, almost unuseable (her tumors are on the left). I tried to take her to the store the other day and she collided and bounced off everything to the point where we had to just leave the store and get home. All & all she is displaying about 90% of all the symptons listed.

We often hear people refer to death as the final step of this journey. We prefer to consider it just the next step. Jennifer's journey....our journey... does not end with the passing of this vessel. From the beginning it included mind, body & soul and while cancer may destroy her mind and body her soul is strong and shall always remain intact. No Pierre...you can't take that from her...from us

RE: Brain hospice time line

by Heather_and_Mom on Sun Jan 02, 2011 08:24 PM

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Tony, you are so right - the body is just the vessel for the soul.  Like a car - we get in it, drive it around, put fuel in it, do our best to take care of it, but we can't predict what exactly will happen to it as we drive it.  At some point, we get out of the car and go.... to wherever we are supposed to go.  Jennifer's soul will always be intact, as you say, and forever bound to yours by love.

Hang in there, stay strong... use all the love you have... there will always be more where that came from.

Peace to you both,

Sue

RE: Brain hospice time line

by heart_and_soul on Sun Jan 02, 2011 09:28 PM

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Tony is she still receiving treatment? What do you know about the tumors growing and where they are in there? there are no two patients exactly alike but yes, I'm sorry to say, for the cases with rapid progression, things can all happen very very quickly. Either there's pressure on functional areas like motor strip or brain stem, or there are ruptures in the tumor which cause bleeds, with results from minor to major. So many variables.

Just be prepared for anything (if possible... how can I even say that?!) and focus on how wonderful it is that you are sharing these days... even that you have the [somewhat terrible] blessing of knowing someone has to move onto the great beyond and that you can really whoop it up or share the deepest emotional intimacy... people who die in accidents do not have this time to cherish and embrace each other.

peace and comfort,

sarah

RE: Brain hospice time line

by I_love_Gary on Sun Jan 02, 2011 10:39 PM

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Tony, I don't know what is going on with Jennifer, and for sure she has some disturbing symptoms, but when I read your post I was thinking of how many times you have feared the end for her, you wondered how you could predict it, expecting it to be soon, or thinking that she would stop fighting, but she is still here!  She has some symptoms, are they tumour related?  Are they swelling related?  Is she exhausted and she displays this extreme fatigue symptom?  I dont' know that it is of any significance, but I have never, in almost 4 years, ever looked at that Brain Hospice site.  NOT ONCE.  I will first investigate the symptoms as to cause, explore the possible ways to treat whatever is happening, and assume that it can be managed, before assuming that the end is within sight.  Then when all else fails, I will turn to that site.

So what is happening these days?  Is she being tapered off the steroid?  Is she fighting an infection?  Is she reacting to treatments?  If she is receiving treatment, what is it right now?  What is her dex dose?  What did the last MRI show?

So many things to consider besides 'the end'.  I hope for you to find some answers, and if all else fails, then I hope for you to find peace with the inevitable, but only when and if it is actually inevitable.

DL

RE: Brain hospice time line

by Roselvr on Mon Jan 03, 2011 12:14 AM

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Tony, what medications is she on? I believe her next MRI is this week?

I know that this is devastating for you; Jennifer has done really well since diagnosis that any change is a worry.

All I can offer are hugs. I hope that you & Jennifer are able to have a decent 35th birthday in a few days. I know it's going to be so hard to do. If she is not able to go out; bring the celebration to the house. Give her more yellow roses in the morning; then give her some pink ones at lunch & find another type for dinner with another for the evening. By the time you go to bed; you will have showered her with roses. I love how cheap they are these days at the grocery store or Walmart.

~Hugs

 

This is from your profile- Then July/10 mri shows recurrence. Surgery not an option. Try Avastin/Sbrt, sept mri shows additional growth, labelled rapid. Nov. MRI shows more growth, Avastin not effective. Adding CPTii to Avastin with follow up MRI on Jan 4 2011.

RE: Brain hospice time line

by TonyNJennifer on Mon Jan 03, 2011 12:51 AM

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Hello all...

Jennifer has still been rec'ing Avastin & CPT as of this past Weds. She has been on 8mg of dex for about 2 weeks now. Her MRI is tomorrow (1.3.11) but since July, the first sign of recurrance, the tumors have continued to grow with no response from treatment. She is also on Lamical.

This past week and especially the past two days alarming symptons seem to be appearing. Besides just fatigue, memory & speech issues (it is now impossible to have a conversation with her), her right side has become affected. When she walks she seems to drag her right leg. This morning I found her on the kitchen floor, unaware of how she got there or what was happening. She also experienced her first urinary incident today. Simply putting on sneakers to go for a car ride was a task. All she wants to eat is sweets...cake...chocolate and she not drinking unless I remind her to.

At the same time she did shower and dress today with no assistance.

The delivery truck arrived 3 times today with birthday wishes and our living room where she spends most of her time is covered in balloons, cards & flowers.

Thank you all for the thoughts and suggestions.

RE: Brain hospice time line

by Finnay on Mon Jan 03, 2011 01:15 AM

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Tony,

First of all, I am truly sorry for what you guys are going through.

I found brainhospice.com timeline very accurate as it was in case with my mother (died of brain lymphoma Nov 18). Unfortunately, her symptoms had been developing pretty quickly.

I with you the best of luck and please stay strong!

Paul

 

RE: Brain hospice time line

by I_love_Gary on Mon Jan 03, 2011 08:41 AM

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Tony, it sure is hell isn't it?  I'm glad to hear her next mri is so soon.  Sounds like you really need to know what is going on there.  I don't know of the drug Lamical.  Anyway, I will be holding my breath for her mri to show any signs of tumour reduction.  You two do not deserve this nasty experience, but you are getting through it with such dignity.  I admire you both.  Keep hope alive.        DL

RE: Brain hospice time line

by Justjules on Mon Jan 03, 2011 03:01 PM

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Wow Tony,

What a ride. On Sat. she was bouncing off the racks in the store, and Sunday she dressed herself without help.

I'm looking forward to the update. She's rocking and rolling this weekend, so something's going on.

The sweets thing made me smile. When Mary/MBG53 was on higher doses of steriods, we would bring home sheet cakes for her, and that little woman would devour the entire sheet cake.  Wow, a post that made me smile...Thanks, Tony!

Best of luck today..to you and to Jennifer. Be careful with Brain Hospice Timeline - you might miss out on the living by focusing on the dying.

Hugs to both of you. Hang in there.

justjules

RE: Brain hospice time line

by Don1500 on Mon Jan 03, 2011 07:27 PM

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Last July I was in the same quandry. My wife was experiencing all the symptoms described for being 6-8 weeks from the end. Now it is January and she is still in the same condition. The Brain Hospice is just a general time line and not a difinitive list. It's not 1,2,3, good-by, a person can be stuck in the same condition for a long time, others may skip ahead and go sooner. Only one thing is true, we all get to the end, sooner or later.  Which is better? I don't know.

I am sorry Jennifer and you have to go through this, remember that we are all here to support you, without the sugar coatings you know are false.

 

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