GBM 8 months into it questions

Saven · New User Joined: 26 Oct 2009 Posts: 4

I am new to these forums, but I have some questions about what I am seeing and what it means.

Some background.
My step-mother was diagnosed with a GBM in Feb. 2009. The main symptom is/was memory loss. She found she could not find her way home while running an errand. Inside a week, she had no short term memory, and with a few exceptions, the last 20 years of her life were erased. She didn't know where the bathroom was, or how old she was.

To add to the fun, she is a chain smoker and has refused to quit, to the point of getting violent when we tried to force the issue. This issue is to allow more caretakers to come into the home, since most of the family will not be around that much smoke. Since then it has only been myself and one other family member that has been able to help my father on a regular basis. I drive down 5 hours one way every weekend, and I am totally burned out.

When people hear brain tumor cancer, they picture the stoic cancer fighter striving to beat it to the end. My step-mother isn't like this, she is a confused, frustrated person that has much more in common with an Alzheimer sufferer.

The Tumor:
Due to the location, the tumor is inoperable. She did radiation in the beginning, and has done lots of Tremador (sp?) chemo treatment phases. We made it through those fun weeks of high dose steroid that I see on here is common with the 1 hour of sleep at night.

My questions that I can't find reliable information on:
When I was down this weekend, I realized she had more memory recall then before. She remembered who made the soup I was heating for her the day before. She remembered other events in a 24 hour window as well. She has never shown improvement before and this is a change. At the same time, she gets more frustrated at trying to figure out if it is night or day then I have seen before. Physical balance is worse then earlier weeks and vision seems to be declining from past weeks. A lot of this is out of pocket cost now, so the last MRI was canceled. She is being treated at Duke, so her doctors are good.
It has been a VERY long 8 months and we are ready for this to be over. She has no quality of life, and lives in frustration and confusion. Is it possible she is getting better? Could she start recovering her short term memory after 8 months of living like this? She is 60 years old, no operation was possible and radiation didn't phase this thing, now she starts to recover a little cognitive ability? I know this is terminal, I have no illusions how this will end. 60 year old GBM victims with COPD in the lungs, diabetes, 3 past heart attacks, and years of bad diet and a lot of sitting in front of a TV don't just recover from the brain cancer do they? I have no idea what to make of the memory recall I have seen in the last 3 days, but it frightens me to the core. If she is going to never get her memory back, and this is her life, I have to hope the end is near and not many more months in the future. I fear that Duke wants to keep its numbers up and will push my father to continue chemo to the bitter end. If this goes on more months, he will die from the toll this is taking on him, and he can't bring in Hospice while she is still on chemo. The positive changes I saw in her have crushed my hopes that the end is near and my family can recover and move on. I am now up at 3 am before I have to get up and go to work typing on a forum looking for answers to the question no one can answer, how much longer must we, the caretakers, suffer?

Saven

ChemoMan

Hi Saven

memory loss is a peculiar thing, You definitly get good days and bad days, I know this as my mother in law suffers from Alzheimers and lives with us.

It sounds like you have little love for step mother . I fail to see how you can be of any benefit to her when you are so ill disposed. I feel for your step mum and I am hoping there is someone who cares in her circle of support, it must be very tough for her.

My advice would be for you to pull back and have less contact with her and let someone with some more compassion than you do the bulk of the support duties. This will also make it easier for you to cope with , in my opinion.

Also there is a chance she will pull out of this, stranger things have happened. I hope she does.

Cheers
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

Saven · New User Joined: 26 Oct 2009 Posts: 4

Actually I love her very much. It angers me and frustrates me to see her live a life of 24 hours a day confusion and frustration. I want her to no longer be in nonstop mental pain. My father has patience like I have never seen in another human being, but he is on his third series of antibiotics for a common infection. His immune system is compromised from the chronic fatigue.

I am angry and biter at a large family that refuses to help due to the smoke in the house. I hate it as well, but its my parents, so I go down every single weekend. I check her sugar levels and do the injections needed to keep the diabetes in check, and I have to light her cancer sticks since her depth perception is off to the point she will light them in the middle.

I put on the game face when I am there, but I can't keep it on 24/7, so sue me. Anyone who has been a long term caretaker can understand the bitterness and frustration of feeling like this is taking you down with it. There is no one else, her own daughter just shows up to stalk out what stuff she wants from her mothers estate, and that sickens me. I have given 8 months ignoring my career growth, my own marriage and myself, and I still can't provide enough nights of good rest to keep my father from looking 10 years older then he did 8 months ago.

My step-mother spent the last 20 years scared of death the way I am phobic of heights. She refused to go into a funeral home and would shutter at any conversation of someone dealing with mortality. Now the only thing she knows is she has a brain tumor. She lost the good 20 years of life she had with my father being loved, and only remembers the abusive first marriage. I think I have the right to be in anguish at the pain she is suffering and want this to be over because I love her too much to want her to live like that. Her good days involve some smiles, so we keep stand up comedy going on the dvd player to try to make her laugh.

I would love to allow someone with more compassion to do the bulk of anything support, but there is no one else. I cried all my tears weeks ago, or at least I think so till I go in to check on them and see my father taking a nap with his arms lovingly around her in the bed. If I pull back now, I feel like I would be damning my father to 1 of the only 2 caretakers being there to watch his wife so he can go to the store, or get some mental break. I just can't abandon him, so I carry on.

What I want to know is what are the chances that someone who has spent 8 months with radiation and chemo showing no reduction to a 5 cm tumor all of a sudden getting better? With the tumor pressed against those parts of her brain for that long, are the memories even still there to come back, or are those decades gone forever? Are the doctors at Duke prolonging this so the average lifespan of their patience is longer then the other hospitals so they can get more grant money for research? Is my family part of the means that justifies the ends (Duke finding a cure being the ends)

My tone may be bitter and angry, but never doubt I do what I do out of love for my family. I just can't keep the stoic mask on between weekend trips,

S

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2404

Hi S,

First ((((big hugs)))). I've been where you are -- not with a parent, but my husband. I understand the roller coaster and I'm the one that aged years in front of my own eyes. Didn't know it until it was long over though.

This IS the place to come and vent. It sure ain't a bed of roses to watch people you love go through this hell.

Can I suggest that this thread be moved to the "coping and support" section? We have a lot of people over there who go through the loops of caregiving, fear, anxiety, exhaustion, and dread. Sometimes it's best to be discussed in a forum where there aren't actual patients. Even though all aspects of this disease are very real, it can be upsetting to discuss them in the middle of the cancer section.

I'll see about moving this thread so we can chat more over there. If it's not here, that's why.

Take care and God bless all of you,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

brainman

Hi Saven, having been a primary care provider for my mother (she too had a GBMIV) and for my father (he had a leukemia), I know how things can become overwhelming. And if you are having to carry a lot of this load without support from others, that just makes things even worse. What kind of a support system do you have? Care givers also need care givers Wink

. We can give you some support here but there is nothing that can replace a real hug from someone who knows you and understands what you are going through.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

ChemoMan

Hi Saven

That was a thoughtful and heart wrenching post, thanks for giving us a clear picture of your situation. It is obvious to me that you have love for your step mum and do care.

Im no expert in brain cancers, there are others here who can help you with questions regarding treatment and prognostic issues. I'm also no expert in helping care for people with cancer but once again there are others here who very well qualify as experts in that regard.

Sorry if my post was a bit brutal but at the end of the day it prompted your reply which has given everyone a good grasp of where you are coming from and helped me to understand your situation at a personal level. For that I thank you.

I wish you all the best, I hope you and your step mum find some peace during these times. Be good to yourself and take care. I will leave you in the capable hands of the experts I mentioned.

Good luck
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

Saven · New User Joined: 26 Oct 2009 Posts: 4

It seems my caustic outlook and my tone is more damaging to those going through this then it will be helpful to me.

I am not phased by mortality, it is the suffering of those I love that is hard. Long deployments in very stressful situations are easier to handle then watching someone I have no authority over making what I consider bad decisions. I can't just order my father to stop chemo. If I approach the situation in any manner even close to that, I cease being someone he can open up to and be support for.

I honestly believe the ends don't justify the means. I know Duke is the best Brain Tumor hospital at least in my area, but I think their motives are not in my fathers best interest. I can love my step mother and still be objective and recognize she never monitored her sugar levels correctly, ate cakes and sweets all the time, she smoked most of her life and has multiple past heart attacks and many stints in her heart, and would never quit. The MRI showed lungs full of COPD. The doctor actually told my father that it is even odds between the cancer, COPD and heart attack killing her in the next year (8 months ago). Lets say she gets the breakthrough cure I hope other GbmIV victims get, what then? The other caretaker and I can't do this all over again when the COPD makes it where she can't get enough air. My father will die for sure if he has to go through this again with her lungs. Frankly its time for her to go, and I know that is too harsh for a place where people are looking for compassion. My whole life has been dedicated to supporting we the living. Protect, and avenge, it is all I know.

My anger reaches new levels when I hear about my my friends getting killed when I should have been there to lead them. I took a compassionate leave to come back stateside and help my father, and I know kids that I was responsible for have died under other leadership that wasn't as experienced as I am. I have to visit their wives and their own kids and look them in the eye knowing my duty prevented me from protecting their loved ones. I can do something for the living, I am impotent in this situation. If my deadbeat family would get the hell over their cowardly behavior, in not being able to see someone at the end of their life, or fear of second hand smoke and actually help the person that gave them the chances, provided the education and the role model that allowed them to be successful, this would be so much easier.

This has done more damage then just to my step-mother and father. This has caused me to totally cut off most of my family in the future. After my step-mothers funeral, they are all dead to me. When I move next, they will not get the forwarding address.

I know my own trial here is not like yours, I have the support of the best wife in the world, and her family to keep my home going. I know I have a different view of mortality, and I have seen too much and lived a life like most can't comprehend so I don't have the soft heart full of unending care that others like my wife have. I am not the person that needs to be talking to anyone that believes in miracles or last second changes. Therefore I need to find my own method of venting that doesn't have me harming others.

I wish all you the best and hope you find your own way of dealing with this horrible cancer. Personally, I will be donating a portion of my pay, likely for the rest of my life, to Brain Tumor research. That is all I can contribute, and it will be my monument for the woman that was able to make my father smile again after he tragically lost his first wife.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2404

Saven,

What you don't see is that you are understood. We all come from different walks of life, so naturally our perceptions of things are bound to be different.

Whether we embrace the same philosophies or not isn't the issue here. This is a place to come and vent whatever feelings one has about a cancer fight. Cancer is the common denominator that binds us together.

On a personal level, I very much understand about one side of the family vs. the other side. My own husband had a revelation about who was giving him their total support and who wasn't during his journey. It was hard for him to see that his family wasn't able to give as much support as my family. I'm sorry that you have siblings that aren't willing to step up to the plate when you clearly have life altering obligations elsewhere.

As far as treatment goes --- that is strictly up to the patient regardless of what our feelings may or may not be about pursuing options. I lived by the simple phrase that it is all about them, not us. As long as they are fully aware of the various treatments and mentally capable of making choices for their own lives, then their choices stand. Part of the job of caregiving is making sure that those tools are given to the patient. The toll that it takes on the "us" part sometimes is grave, but were the situation reversed, who knows what path we each would take.

It is what it is, so deal with the reality of the situation. Being a control freak myself, I understand where you're coming from and appreciate your sensitivity for your Dad's needs too. Do your best in the situation to see that your Dad is relieved of as much stress as possible. That is something you can control. Find those little places where you do make a difference and it will help all the way around. Approaching this with a joyful heart of giving goes a long way -- even when your heart is torn in two directions.

I give to lung cancer research, but give of myself to these forums in honor of my husband and those who gave support to me.

Take care.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

melkissa

[quote="pbj11"]Saven,

What you don't see is that you are understood. We all come from different walks of life, so naturally our perceptions of things are bound to be different.

Whether we embrace the same philosophies or not isn't the issue here. This is a place to come and vent whatever feelings one has about a cancer fight. Cancer is the common denominator that binds us together.

On a personal level, I very much understand about one side of the family vs. the other side. My own husband had a revelation about who was giving him their total support and who wasn't during his journey. It was hard for him to see that his family wasn't able to give as much support as my family. I'm sorry that you have siblings that aren't willing to step up to the plate when you clearly have life altering obligations elsewhere.

As far as treatment goes --- that is strictly up to the patient regardless of what our feelings may or may not be about pursuing options. I lived by the simple phrase that it is all about them, not us. As long as they are fully aware of the various treatments and mentally capable of making choices for their own lives, then their choices stand. Part of the job of caregiving is making sure that those tools are given to the patient. The toll that it takes on the "us" part sometimes is grave, but were the situation reversed, who knows what path we each would take.

It is what it is, so deal with the reality of the situation. Being a control freak myself, I understand where you're coming from and appreciate your sensitivity for your Dad's needs too. Do your best in the situation to see that your Dad is relieved of as much stress as possible. That is something you can control. Find those little places where you do make a difference and it will help all the way around. Approaching this with a joyful heart of giving goes a long way -- even when your heart is torn in two directions.

I give to lung cancer research, but give of myself to these forums in honor of my husband and those who gave support to me.

Take care.

PBJ[/quote]
I 100% agree with this post. I understand and completely sympathize with your feelings. I helped care for my dad before he passed but we had a lot of help from family... I honestly can not imagine being in your situation. You have so very much on your shoulders. I know you are weary but I also know you are strong. You can do this.
Unfortunately I can't answer any medical questions, I am clueless when it comes to that kind of thing. I am like you though- the last thing I wanted to hear was how we could still hope for a miracle. I am a skeptical person by nature and I am not religious so it really was not helpful to me.
Anyways, if you ever need to chat feel free to message me. Please keep us posted.
Melissa
_________________
My dad was diag w/nsclc stage 4 & mets to spine & hips on 11/08 at age 43. Large mass on R lung & collapsed L lung. No surgery so chemo & rad 5d/wk. No results. 4/09 rushed to the hospital b/c breathing issues. Hooked up to o2 & treated for infection. Released when o2 levels were good w/help from Hospice at home. In Hospice as of 6/2/09. Passed 6/10/09. Missing you forever daddy.

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