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A personal dilemma - 10/22/2008 11:45:37 AM   
Subductrssss


Posts: 97
Joined: 9/28/2008
Status: offline 		Okay I have a dilemma and since I am not on any cancer forums (Those things scare the chit out of me) I am coming back here to the one place I do consider home and updating and asking for advice.
I as I have posted have colon cancer, well it metastasized to my lungs and liver. I have talked to the American Cancer Society and received a lot of information. I go to my Oncologist this afternoon to get the rest.
 
What I have been told is; The cancer is inoperable now, is it incurable and the median survival rate is 18-24 months with some passing as early as six months to a very few going to five years.
 
My dilemma is I have one friend in this world where I live, I am living in her one bedroom apartment on her sofa with her and her boyfriend and her dog and my cat (I had to give up my dog Chloe when I broke my ankle as one jump on me from her would have ended in not good things for me ~ she has a GREAT HOME now), I am on disability and don't get a lot a month.

My Dr. has told me very little about the chemotherapy treatment he wants to do (That's one of the questions I am going to ask him this afternoon) but from what I have read I am scared chitless about the effects.
I am perceived as a strong woman but I have two weaknesses; my heart which longs for love but has led me to bad relationships in the past and my intolerance to pain, I am not a strong woman when it comes to pain, organic pain that is (stomach aches, head aches, when I broke my ankle I screamed for hours and begged for my mommy (deceased 20 some years) and practically drove the EMT's nuts with my begging for morphine before they even took my vital signs).
 
Now my Dr. has told me with my living situation I might be better off going to assisted living or a nursing home, I am checking into this. But the problem is most want $1200 a month at the LEAST and with my disability I am unable to meet that and so far I don't know how much medicare, madical and my private insurance will pay.
 
My dilemma is I am not afraid of death, I am more afraid of the side effects of the chemo and any pain. Without the chemo I have 6-8 months and I have really no family other than sons that I have not seen in person since they were 3-4 and who are pissed at me cause of their father's influence, my own deeds and words and my leaving, my husband who is gay and in the military and we only married to get me health benefits and him prestige, whom I have not seen in years and not talked to on the phone for a good few months now and only email is our interaction. Another friend I have is the same we are friends but don't really talk on the phone, haven't seen each other in years and only talk through email although she is thinking of possibling coming to see me.No milestones coming up I want/need to hang on to, in other words, nothing to really keep me here.
 
My friend Mary is the most wonderful person in the world but she nursed and watched both her mother and father fight and then pass away from Cancer.
 
I am contemplating and she had given her blessing on if I want to, not taking treatment in which case I will have as I said 6-8 months. In which case I would start the process of getting into hospice, stay here on her couch and in her home and once I started showing signs of decline would be taken into hospice to live comfortably until I passed.
 
I as of yet don't feel, look or act sick and yet I have a death sentence on my head and am being realistic about it.
 
Am I a coward for considering not fighting this and for subjecting my friend who has done so much for me to watching me get sicker and then passing?
 
The one thing I want more than anything to know from my Dr. this after is HOW BAD IS IT? Meaning do I have tiny lesions in my lungs and liver which can be shrunk by chemo or am I full of this crap where I might pass in six months anyways even with chemo.
 
So this is my dilemma and I value any response.
 
Love,

Marsha


_____________________________

Subductrssss

The reality of the other person lies not in what he reveals to you but in what he cannot reveal to you. Therefore, if you would understand him, listen not to what he says but rather to what he does not say.
Kahlil Gibran
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RE: A personal dilemma - 10/22/2008 11:48:54 AM   
kittinSol


Posts: 16926
Status: offline 		With such a bad prognosis, I think I'd rather get comfortable rather than fight a loosing battle with all the pain and anguish it would bring. I don't quite see why it would be cowardly to accept one's fate. 

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RE: A personal dilemma - 10/22/2008 11:52:36 AM   
JustDarkness


Posts: 1461
Joined: 7/25/2008
Status: offline 		VEry touching to read. I am not good with emotiosn and english..so forgive me if I sound cold. I want to wish you good luck with the things you will meet ahead. .
What advise? Mmm nomatter what you will do now...as with many things..we will know best aftherwards.

If it is really..so hort..that you have to live..then do as you feel..and want. Talk to your friend..s your Doc what you wnt..and decide yourself aftherwards.
People close to you will accept the way you chose...as you only can make yourself as comfy as you want...others can't do that for you. They just can be there
(if that makes sense)

ps if you don;'t take chemo..ask what they can do to prevent pain...

< Message edited by JustDarkness -- 10/22/2008 11:53:50 AM >

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RE: A personal dilemma - 10/22/2008 11:53:49 AM   
sirsholly


Posts: 42360
Joined: 9/7/2007
From: Quietville
Status: offline 		please ask your doctor for a referal to Social Services. They will help you with Asst living/nursing home placement that you can afford. They can also help with Hospice care.

quote:


Am I a coward for considering not fighting


I want to hug you so badly right now and if i did, i would be hugging a woman of courage. There are times in our lives when standing still takes more courage than moving forward.



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RE: A personal dilemma - 10/22/2008 11:56:54 AM   
Steponme73


Posts: 552
Joined: 11/9/2007
Status: offline 		I am sorry to hear about your cancer.  My brother-in-law was just diagnosed with colon cancer.  They took out about 2' of his colon.  While they were in there they found that it had spread to his liver in both lobes.  He is classified as stage 4 and has been given about a 13% chance of living 5 years.  Because of where it is located they can not operate.  He has been on cemo now for 4 weeks. 
He shows little signs of the cemo so far.  The only side affects that he has seen so far is that he can not touch or drink anything that is not room temperature or above for 5 days after having a treatment.  They are treating him very aggresssively, or so I am told.  He does have some weakness and is a little lathragic at times, but outside of that he seems to be ok.

Each one of us have to make that decision when it comes.  I have heard all kinds of stories and do not really know what to believe.  I would research on the internet all you can about cancer.  Where the best treatment facilities are, how they do it, what they specialize in, etc.  Personally I would not give up, I would fight to the end.  You never know, strange things happen in people all the time.

I guess my advice to you is research, get as many facts as you can.  Pray, get right within yourself.  Then make the decision.
I wish you the best of luck and godspeed.

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RE: A personal dilemma - 10/22/2008 12:04:43 PM   
angelikaJ


Posts: 8641
Joined: 6/22/2007
Status: offline 		It is very difficult to make these decisions without having all the information...

Things to find out:
Sometimes chemo can improve the quality of one's life.

Are there any promising drug trials?

If you have a limited time... I would check into going to a hospice... you don't necessarily have to be on your deathbed to go live there...I think you would find it to be a better option than assisted living or a nursing home... from a quality of life perspective.

Also look into your palliative care options.

I am so sorry.

What can I do to help you?



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RE: A personal dilemma - 10/22/2008 12:06:49 PM   
mc1234


Posts: 683
Joined: 10/4/2008
Status: offline 		I'm so sorry you're facing this issue.  I agree with the other poster who mentioned contacting Social Services.  You need more information to know what your choices are.  They will point you in the right direction.

As for your fear of chemo and pain ... I completely understand that.  One of the doctors' goals should be to keep you comfortable, especially if you decide not to be aggressive in your treatment.  And as you said, you'll know more about your options after your appointment this afternoon.

I hope you don't mind my adding this ... I had a rift with my father for twenty years.  If he had died without us healing that rift, it would have stayed with me forever.  Perhaps you can reflect and write the boys and anyone else you feel appropriate, letters on your feelings for them.  Let them know you care, even if outside influences are telling them you don't.  Take this opportunity to reach out - you never know the good it may do them to know how you really feel.  And it may give you peace. 

My thoughts are with you.



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RE: A personal dilemma - 10/22/2008 12:11:40 PM   
servantheart


Posts: 960
Joined: 10/26/2006
From: Houston, TX
Status: offline 		Hi Marsha,
 
Being realistic in the face of a poor prognosis does not make you a coward.  It takes great strength to face this battle with the practicality that you are.  Accepting or refusing treatment is an individual decision for each person diagnosed with advanced cancer and plenty of others have made the decision to forgo when considering their options. Hospice is an excellent choice for when your prognosis is six months or less.  Hospice took care of my Dad the last week of His life and I will always be grateful to those nurses for giving Him such wonderful care. 
 
As for your friend Mary, she knows exactly what she's dealing with in nursing you through your final months, having been through this twice already.  I'd take her at her word when she says she is up for this.
 
 

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RE: A personal dilemma - 10/22/2008 12:12:30 PM   
Subductrssss


Posts: 97
Joined: 9/28/2008
Status: offline 		Thank you for your words and your replies. (soft smile) so far and those to come.\

I have been told  each cancer is different.
 
With mine what the ACS said is the first round of Chemo is aggresive but can result in diarrhea almost constantly, nausea and vomiting, neuropathy of the finger and toes which results in not being able to touch anything cold or hot without extreme pain (no hot baths, no handling cold drinks, no cold showers in the hot summer as I do, etc) and everything I eat tasting like metal and my appetite decreasing. These are the most common and likely side effects, there are more that are more severe but less likely. There are drugs they can give me for the nausea, diarrhea but not for the neuropathy or the metallic taste of food.
 
Without chemo, my liver will fail, my lungs will compress with fluid around them and I will begin to lose weight drastically, have pain and nausea, etc, the one thing about this is; hospice can and does aggresively control pain and make the patient and friends and family as comfortable and at ease with the passing as possible, more so than rest homes, nursing homes, assisted living and hospitals.
 
I am taking each persons words and re-reading them and getting a sense of them and going to keep doing so, in the end I know it is my decision and my decision only but input is a great help and I do thank you all.
 
Going to log off for awhile and do PT for my ankle (three more weeks before I can do any weight bearing walking on it although the cast is off now (I do cheat and hobble around the house to do things for myself when Mary is at work (grins) but try not to overdo it).
 
I will log on when I get back from my Dr's and update again.

Love,
 
Marsha

_____________________________

Subductrssss

The reality of the other person lies not in what he reveals to you but in what he cannot reveal to you. Therefore, if you would understand him, listen not to what he says but rather to what he does not say.
Kahlil Gibran

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RE: A personal dilemma - 10/22/2008 12:17:24 PM   
subenigmatic


Posts: 40
Joined: 6/25/2008
Status: offline 		I am so so sorry to hear that you are in such a place- my heart truly goes out to you.  Holly is right that you need to have your doctor help you get in touch with a social worker who can help at home care, assisted living placement or even hospice placement.  Being a nurse, I have seen that sometimes the treatments are worse than the disease and I often joke that if I get a diagnosis of a terminal illnes, send me to the nearest beach with a morphine drip and my closest friends so I can truly enjoy my last days.  My most memorable patient was one who took what the doctors told her, weighed all her options and then bravely said she didn't want the surgery, she wanted to go home and live her life and when it was her time to die, so be it.  All those things being said, I don't think you should make any decisions at this point until you are able to talk with your doctor more.  Make sure you write down your questions ahead of time and don't let him/her leave until all of them are answered to completely.  If need be, go to a different doctor to make sure your questions get answered.  The best thing you can do for yourself is to make an informed decision.  If there is anything you want to ask or talk about or just need some support, feel free to message me on the other side.

My prayers are with you


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"Be not simply good, be good for something."

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missub on CM

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RE: A personal dilemma - 10/22/2008 12:17:28 PM   
CallaFirestormBW


Posts: 3651
Joined: 6/29/2008
Status: offline 		One of the things I do where I work is do quality-of-life trials for colorectal cancer patients. CRC is really a mixed bag. Inoperable CRC doesn't really respond to a lot of chemotherapeutic agents. Chemo is difficult, and everyone deals with it a little differently. The biggest side effects that I've documented on the QOLs are anorexia/loss of appetite and exhaustion. These can get pretty heavy-duty.

It's true that the 18-month and 5-year survival rates for metastatic colorectal cancer are not very encouraging. At the same time, we've had a couple of folks celebrating their 15-year "cure". It's much harder, though, if it has already metastasized to multiple areas. I wish you the best, no matter what you decide, and if you want to write me on the other side, I'd be happy to talk with you more.


< Message edited by CallaFirestormBW -- 10/22/2008 12:19:49 PM >

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RE: A personal dilemma - 10/22/2008 12:21:57 PM   
LaTigresse


Posts: 26123
Joined: 1/15/2006
Status: offline 		Wow, words just fail me.....a rare occurance.

I don't think anyone here can really tell you what you should do. None of us really know what is in your heart, or that of anyone in your life.

I don't want to offer sympathy, I don't feel that you want it. I cannot offer advice and refuse to offer up empty platitudes. If you were closer, and even though you are not, I gladly offer a place to stay. It's a peaceful quiet (not counting the ruckus the dogs make, or the  short people when they visit) place. Most tell me it is like visiting a resort of sorts. It would be way better than a cold impersonal care facility. And, I am sincere in my offer. The lower level could be made more private than it is. You could be in a home environment, with more privacy.........whatever route you take. Just contact me if you would have any interest at all.


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My twisted, self deprecating, sense of humour, finds alot to laugh about, in your lack of one!

Just because you are well educated, articulate, and can use big, fancy words, properly........does not mean you are right!

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RE: A personal dilemma - 10/22/2008 12:47:32 PM   
pahunkboy


Posts: 33061
Joined: 2/26/2006
From: Central Pennsylvania
Status: offline 		Hello.  You need to find a hospice.

Also-  check the cancer board to see how accurate the 18-24 mos is.   So if you get chem- then 12-24 mos would be added to life.  hmm. if those months are recovering from the chemo then, I personally would not.

You need the expertise of a hospice.  But also double check your DR.   I feel petty reading this.  BIG HUGS to you my friend!   It isnt fair. Im sad for you.  Pls keep in touch.

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RE: A personal dilemma - 10/22/2008 12:56:00 PM   
BlackPhx


Posts: 3432
Joined: 11/8/2006
Status: offline 		Subductrssss I can't say that I know where you are or what is the best thing for you to do. That is something that only you can ultimately decide. But I do know a few things. Chemo affects everyone differently and while there are common side effects (since they are basically poisoning your body and hopefully killing the cancer cells before the healthy ones)not every one experiences them at the same level. You may well do very well with Chemo and perhaps radiation therapy for the metastisized area. They are currently experiementing with Cryosurgery on ensophogeal cancers, perhaps they will find it effective for smaller lung cancers. You won't know until you explore all possible treatments. I will also say get more than one opinion, not on the cancer, but on the treatment recommended. Each Dr. has their favorite method of treatment.

One thing I will point out. No where on your body is there an expiration date stamp. You may pass tomorrow or last 20 years if it is treated. Again everyone is different. My mother passed from Pancreatic Cancer, a cancer they treat with Chemo and Radiation and still give only a 5-18 month survial time. Patrick Swayze is passed that point and still counting, so far he is responding to treatment. Attitude can make a great deal of differnce in how long someone survives or even if they get well.

Think long and hard about what you want to do and then commit yourself wholeheartedly to it, either way. Don't worry about the way you are going to pay for it..social services will help, as will several charities. Hang in there and good luck.

poenkitten

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RE: A personal dilemma - 10/22/2008 12:57:50 PM   
lronitulstahp


Posts: 5392
Joined: 10/17/2007
Status: offline 		Marsha,
i have put you in my thoughts and prayers...i can't seem to find adequate words.  i believe in miracles, and i also believe in living out life as you choose, and with dignity.

Your strength reminds me of a quote:


Only when we are no longer afraid do we begin to live.
 
~Dorothy Thompson



You have mail.



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Truth is, everybody is going to hurt you; you just gotta find the ones worth suffering for." -Bob Marley

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RE: A personal dilemma - 10/22/2008 3:01:15 PM   
pahunkboy


Posts: 33061
Joined: 2/26/2006
From: Central Pennsylvania
Status: offline 		ya know a week ago, I was talking to my buddy in Texas...she has very little.  She lamented that her online friend with cancer is no where to be found. And that she "had to" change her credit card number.

..so she had been sending her the ok to use her cc to get stuff.   anyhow- while I wish people well- I am concerned that she sent ANYONE she met online money.  

vit C is good for cancer.  anyone I had known with it DID do the chemo.  Ild try to get burial arrangements and all that figured out. then ild take a cruize around the world.  travel.   

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RE: A personal dilemma - 10/22/2008 3:36:37 PM   
Lockit


Posts: 11292
Joined: 5/7/2007
Status: offline 		Assisted living can be paid for by medicaid I believe, if not, maybe HUD or your city may have a housing program.  You would qualify because you are on disability.  You could also get a phone for about $12. a month.  

I lived in a place that was one step from assisted living.  In most places for assisted living, you have your own quarters, but are monitored and they are geared for helping you.  Where I lived they served two meals a day if you were well enough to get to the dinning hall, for a very low amount, far less than it would cost you to prepare the food yourself. 

You most likely won't feel up to doing a lot of things so it is a nice help when you have people there, focused on your well being and helping you.  The other people there may just be older and relativily healthy and believe me, they can be a great source of many things.  You can have visitors and live pretty much on your own.  It all depends on your needs.

You can call social services yourself and ask for a program that serves the aged and ill or blind.  They have special social workers that deal specifically in this area.  They know just about everything in the community and some outside it that is available to help you.  Most doctors don't know this stuff unless they have personal experience with it.  You can sometimes get information at your local hospital, but that isn't as in-depth and your best bet is social services.  If you can't get through to anyone and want more info, I have found seniors centers a wealth of information.

I know that deciding anything right now is overwhelming, but I would encourage you to go to assisted living as I know many who have been very happy in them.  They will also help you determine if you are ready for something else at some point and they help you resource big time.  No one likes losing their independence or freedom and I think that is what holds a lot of people back from pursuing help that is out there.  Believe me when I say... when I got there, I could have hugged the carpet, so glad I was finally safe, in my own place and able to rest when I needed with the comforts of home and not in someone's house or part of their house.  Sometimes you want someone there and sometimes you just want to lay there and zoombie and you can when you get 'home'.  I wish you well and can't imagine what you must be feeling... but my thoughts are with you!


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RE: A personal dilemma - 10/22/2008 5:22:25 PM   
proudsub


Posts: 6142
Joined: 1/31/2004
From: Washington
Status: offline 		I have a golf friend in a similar situation.  Her family was told that chemo was being recommended soley to give her hope.  She hasn't decided about the chemo yet. If it were me i would go do some things that i have always wanted to do while i was still strong enough rather than spend my time taking chemo. I wish you the best.

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RE: A personal dilemma - 10/22/2008 5:33:32 PM   
GreedyTop


Posts: 52100
Joined: 5/2/2007
From: Savannah, GA
Status: offline 		*hug*

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RE: A personal dilemma - 10/22/2008 6:08:34 PM   
corysub


Posts: 1492
Joined: 1/1/2004
Status: offline 		I think you are a very brave person, thinking clearly about what might be the best course of therapy. I can't give you your answer, my wife has lung cancer and went the chemo route and so far it is not spreading.  As far as assisted living, I have been through that too with a Mother in law with dementia.  She did not require frequent doctor care and, in your case, possibly you might do some research on nursing homes...as well as the facilities available to you since you are on disability. 
Personally, I would contact my local State Representative and Congressional Representative.  Possibly someone on their staff has worked to help constituents with similar
problems and might be helpful to you.  Possibly not, but it could be worth the shot.

I wish you well...and sorry I do not have more to say that might be helpful....

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