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CMMoore Offline OP
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I miss having a "man of the house", someone to schedule the car maintenance, play in the garage, build me things. I have this shell of a husband and I don't know what to do. I miss intimacy. I miss feeling like I have a strong man to turn to when times are tough. I feel like I am alone already. We have these rare and brief moments where we reconnect and it's like OH MY GOD I'VE MISSED YOU!!! We'll cry together, share some feelings. But the next day it is inevitably two ghosts walking past each other day to day....


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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Welcome to my world...I'm upstairs while he stays downstairs. He isn't taking care of himself. And "I" have given up. I can't "B" any more. He isn't drinking his Boosts or eating all day. He drinks his friggin beer and continues to smoke cigarettes all day long. I can't do it anymore.


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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One word, Suez: Al-Anon.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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CM, my heart just goes out to you and Matt. I just re-read your previous posts and it sounds like Matt is tired of the recurrences and fighting this disease. While he is dealing with the prospect of dying, you are grieving the life that you had together prior to this insidious disease. While the "old" life may not return, a new life can begin... and your relationship is and will continue to grow stronger as you fight this battle together. Do you think that the two of you could take vacation or a mini-vacation and do something that is enjoyable to you both.... just some activity to serve as a distraction to dealing with cancer could be very helpful.

Anyway, I'll keep you both in my prayers.

Big hug to ya from NC.

Dodie


Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
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CM- So sorry you are dealing with this. I agree with Penners. My husband and I would sometimes take a walk, albeit a very short one. It helped to clear our heads and remember why we were together in the first place. It helped me to take a small step out of caretaker mode and see the truly brave, amazingly strong, man that he was.


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
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I always did and always will maintain that Robins cancer destroyed two lives,not just his.During his illness and treatment, it took my husband away and replaced him with a helpless angry resentful bitter man who had no room in his life for anyone but himself and his disease.It took away my friend,my lover and my provider.It took his life and mine,and it takes time to come to terms with all of this.One way of getting through,is to talk to other women in the same boat.Get it all off your chest,there are plenty of us here to listen and advise.


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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I'm on the other side of this issue, sort of. I'm the one with the cancer. In my case my prognosis is actually pretty good. It's been 7 months since the end of my primary treatments (7 weeks of radiation, 3 chemo sessions) which nearly killed me. No more than 7 weeks ago I had the results of a limited neck dissection surgery which found no cancer at all in my neck, so for now, I'm in the clear and in "clinical remission".

You would think I would be ecstatic, doing cartwheels of joy. But I spent a large percentage of the last 7 months mentally preparing myself for a slow and painful death; I was unable to even hope for the "good" result I've had. Somewhere between the physical "trip" I've been through, possible PTSD, and the fact that during my trip I had to abandon my work in environmental consulting and move from North America to London England (where my wife has professional work), where I have few prospects for work and almost no friends, I'm having some real trouble.

It's as if a big "reset button" has been pressed in my mind. My interests are all gone. My sense of optimism is trashed. I struggle to get out of bed in the morning, literally.

Things with my wife are strained. To be fair, she's been through hell this year, and has done a LOT to try to ensure that we have an income and a home (which is how we've ended up in London). I am not complaining in that regard. But the reality is, we're having to re-approach our relationship from scratch, and we've both changed a lot. And my tendency for negativity and gloom are a big problem. Also, money is tight, living on one income in this expensive place.

About ten years ago I had a bout with depression, and ultimately the answer was to make a major change in my life, and get some exercise. I'm trying that, but it's hard to force the exercise.

I find London expensive, grubby, flat, unfriendly, unwieldily and low on opportunity. I used to be very handy, much more "capable" in general than I am now. I'm a hollow shell of my former self. It's as if most of my interests have been burned out of me by their triviality relative to looming death by cancer, and even now, have not returned or been replaced by new ones.

Give it time. Yes. This is about all I can do. If I had a job, and a few friends here, I would probably feel quite a bit better. I think that for me, the combination of coming out the back end of this "trip", combined with being in a strange foreign land (and not foreign in any particularly "good" ways) is a bad combination. Perhaps I'm still "healing" from my ordeal. After all, it's only been a handful of weeks since my unexpected "good" news.

Why can't I see this as an opportunity?

I hate feeling this way. It's miserable. Way more difficult than I would have imagined. And this while I'm basically "ok"! Sure, I have residual side effects, dry mouth, poor sleep, dodgy digestion.....but relative to so many of you on this site those are trivial. For all I know I might feel this way being "trapped" in a strange old English city without a job or friends, regardless of having had cancer (if I dare speak of it in the past tense).

It's pretty clear to me that if I'm going to be here, I need to find a way to get active and meet some people. And I am working on this. If I was still in Vancouver I think it would be much easier, but this place is just that much different and strange to put me at a strong disadvantage.

I'm not sure what point I have to make here, other than to tell my own story and express the fact that despite being in relatively good physical shape and having had about as good news as possible for a person with cancer, I'm still struggling to get my feet back under me. I hate feeling this way, and I feel guilty that I feel this way (which of course doesn't help).

I have support, but with that support comes pressure to do better. This is hard, but it's nothing like what I went through in May of this year. All odds suggest I'll make it through this......but the question is, what will I make it through *to*.

Only time will tell. And all I can do is move forward from where I am, right?

Right!

Onward through the fog!

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
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Thats an extremely insightful post Seth.The great thing about it is your awareness and honesty about how you feel.For most of us wives thats all we needed.An honest explanation,but the communication button seems permanantly switched to off in most cases i have encountered.Moving to a place like London must be unbelievably stressful,having been born and lived their till i was 17 i know it to be a cold lonely impersonal place full of people with their own lives to live.There are much nicer and cheaper places to live in the UK within easy commute of London where you might have more of a chance of easing back into life after cancer.

We have a saying here on OCF "the new norm" and i guess you are trying to find yours.Keep communicating Seth and time will bring its own peace eventually.


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

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Seth, you've gone through such huge changes, so many that your psyche must be just reeling from it all. I've seen how hard it's been for Gordon to adjust to the "new normal" (and quite frankly, he struggles with it daily) and if anything else were added to his situation, like a big move, change in employment status, etc. I think he would just implode. Depression has been a big issue for him, and I can't help but wonder if this is what's going on for you. Depression can be like a snake eating its own tail, making it pretty hard to get the motivation to get out and do anything. Anti-depressants have helped Gordon to some degree - if you have a Dr. in London, might it be useful to ask about this? Sometimes we need a bit of help to climb out of the hole.
Anne (who also lives in Vancouver - we probably passed each other in the BCCA halls)


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Suez,
If you haven't read "Codependent No More", by Melody Beattie, I strongly recommend it. The only person you can save is yourself, and you need to start now. Al-Anon is a really good suggestion too. I am working on changing my "caretaking" behaviour every day now. So different from "caregiving". Good luck. Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Hey Guys so glad this post was started. As a caregiver to my sister during treatment things were good. We were talking and getting closer. Now a month and a half after treatment we have both become bitter.
Her for the toll that this disease has taken on her life mentally, physically, financially. Me for the toll it has taken on my family, my finances and just life in general. Both of our attitudes have changed, We actually had a big fight on my birthday and haven't said much to each other in a week and we live next door to one another.
It frustrates me that she thinks she is the only one that has been battling this disease. Yes she has suffered the physical and mental pain of treatment and had to stare death in the face. I just want to yell out sometimes that I looked at death also when I saw her that first day in ICU and you know what it scared me to death also...I am the young sister I am not suppose to see this stuff..
Sorry for rambeling but if you say these things to people they look at me like I am nuts for complaining with all that she has gone through how can I complain. I just feel like i can't tell anyone my true feelings.
Well she went for a little vacation this week which i hope lifts her spirits..I just really really really hate how much my sister has changed.... Thanks for listening!


CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
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Susan - you it the nail on the head! You are not nuts! crazy Anytime a change occurs, it can be so stressful even if it's a good change that happens. There were times when I felt resentful, too, because of all the change that occurred in my son's cancer, mentally, physically, financially to me as well as to my son. On top of that I felt guilty for even stressing over my own changes when he was going through so much himself! However, for me, four years later, I can say that it does get ever so much better - I can enjoy the "now" so much more and the stresses I had previously have become "small stuff". Surely, your sister's vacation will be beneficial to her, and to you, too! Let us know how the vacation went.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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I think that some of my resentment stems from the fact that 'he' is the center of 'our' life now. 'I' don't exist for now.
My birthday was last week. He was the last one to even say happy birthday to me. No gift, no card, no hugs first thing in the morning... none of the things he knows I love. Just a barely recognized event, hardly worth mentioning it seemed.
I live each day wondering how i can make his a little brighter.

We have a little vacation scheduled over Christmas. I hope he will make the trip okay. We're going to New Mexico, it's just over 800 miles one way.
He'll be three weeks out of radiation on his pelvic bone, and we will of course alter any plans based on new CT scan results coming up next week. I just hope that the new pains in his hip doesn't prevent him from taking the road trip.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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Robin ignoring my birthday and even going so far as to spoil it altogether,was the straw that broke my back.Seems silly now......


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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Thanks to all of you who have posted here. It's really helpful.

Before I was diagnosed with SCC in Oct of this year, my life was overwhelmed with caring for others. My mother was diagnosed with brain cancer in June. My step-daughter needs a lot of special care. I was just overwhelmed with caring for, and thinking about, others. Now I'm trying to spend each day focusing on What Do I Need?

It's been, uh, interesting going from being a caregiver (for my mother's brain cancer) to a cancer patient myself.

I still feel a little guilty for letting go of some of the responsibilities I'm "supposed" to take on - helping with my mother, etc. But I remember a conversation with my sweetie after I was diagnosed with cancer, when I said "I need permission to just let go of responsibility for my parents' household and what happens there." Her response was "The universe just gave you permission."

To some of those caregivers out there, you have a harder process in front of you. You may not have an obvious "excuse" such as your own cancer diagnosis, but you have just as much permission to do what you need to do to take care of yourself, to follow your own path.

It sounds reasonable and like good advice as I type, but I also sit here feeling guilty even now, worried that family or friends might think that I'm selfish for doing what I need to do for my own life. That someone close to me will be mad at me forever. But I'm trying, each day, to make different decisions than I used to make, to think about what I need, and to remember that I'm not responsible for others' feelings. My life will be better if I put myself first and even if I feel bad or afraid I might upset someone, I need to live my life in a way that makes sense for me - and deal with those feelings and fears about others' reactions.

Hope that helps. Thanks for listening!

Rahel


Leukoplakia 3/07, 34y.o. non-smoker/drinker
Biopsy 3/08: clear (no monitoring suggested - grr)
Biopsy 10/18/10: SCC, Stage 2 1.
Surgery 11/15/10: glossectomy R side oral tongue & partial neck dissection. Margins, nodes & salivary gland clear!
Subsequent MRIs/CTs/PETs: All clear!
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a birthday does seem trivial in the grand scheme of things... but it's the little rays of light that get us through the darkness day by day


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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I hear you on the birthdays. No cake no card no happy birthday for me this year from my family either except my husband. All put aside because of my sisters sickness. It makes you feel terrible so I feel your pain.
My husbands dr just called and wants to see him again. High white blood cell count. Oh great!! Something else to battle now.


CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
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I am wondering today... how does someone depressed help someone that is even more depressed?
Seriously? I am already on the highest dose of Effexor that is allowed. And all I want to do is sleep and wake up when its over.
He's very down now due to the new lesion in his lung and the docs decision to wait for a new pet next month before taking any action. Yesterday he was so angry I just let him brood for a few hours.
He worries terribly about his kids one moment, then feels they hate him, then feels this cancer is their fault because of something they told him they prayed for.
They said they asked God to find a way to make Matt have no where to turn to but to Him. Of course Matt now said, thanks a fking lot kids. Mission accomplished.
Its hard not to get sucked down into that darkness.
Yet if I'm happy and in a good mood, I feel guilty because how can I be happy when he's going through this?
Seems a never ending battle with no winning side to it.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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CM - I'm so sorry for what you and Matt are having to go through - It is so hard to fight depression and try to help someone else also going through such a difficult time. Try not to feel guilty for the little rays of light that come by to help you feel better. As caregivers, we all need those moments to help ourselves be stronger in order to get through with the caregiving. There were times when I wondered, too - how could I keep from getting "sucked down into the darkness"? I wanted so much to see some little sign that my son's depression might be lifting. Trying to get a depressed person from sad to happy cannot be done all at once. It is only done in very small steps. I would ask my son "On a scale of 1-10, can you tell me how you are feeling?" If he said "4", I would ask if he could manage to try to get to a 5 or even 4.5. Just trying to get himself to one little notch up seemed to be a little easier that getting himself out of the deep hole he was in. I would find myself searching for any small happy moment that I could share with him like something sweet his daughter had said or done. And it helped me, too. You are right about those "little rays of light" - and when they come, hang on to them for as long as you can. I do hope that more of them will come your way for you and Matt.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Today I decided when I woke that I would not let his negatives bring me down, although I could already hear him awake and cussing about every little thing in the living room as he talks to himself.
I figured it is a good day to go shopping with my son. I asked M if he wanted to come along so he could get out of he house. He asked if we would be going by a sporting good store. I reply, why yes, as the store I was headed to was one exit beyond the newest Academy outdoor store here. He says good, I need a firearm to start taking out people. WTF? I'm thinking. So, I said nothing. Just got my son and I ready and left. He calls half an hour later, saying "thanks for telling me you were leaving" (although I sat right across from him to put on my shoes, and get my keys out of my purse) Fast forward after taking FOREVER to check out of the store, I get home and he has locked every available entry to our house, knowing I don't have keys cuz my son takes them to school..(yes, I should make a copy, and will today)... He even locked the door from the garage because I have a door opener.
He said the doors were rattling. Never have in the three months we've lived here, but they do now.
Anyway... he's now dressed and getting ready to leave. I asked did he need money, as he always runs out before his ssdi check comes... he says he'll just use my account and spend whatever he fing needs.
We argue a few...
He says I'm too small minded to understand anything he is going through, and everything is coming together now... soon as he starts killing people everything will be okay...
I should call someone, but who?
He is smart. he is cunning... he would fool them into thinking he never said such...
I HATE THIS


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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Ark doesn't have a baker act I can call for... I don't know who to call. My family is NO support. His is too far away. We don't have a church family to turn to. The local "hope cancer resource" has told me he has to request help himself, me calling wont put anything into action.

Is this normal venting/expression of the fear and anger of a cancer patient?


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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And... as a parent (he's the step dad)... when does it cross the line that my child shouldn't be around this shit?


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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If someone is threatening to kill people then its a mattter for the police.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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I would at least share this conversation(s) with the local police, maybe even the FBI just to see if I could get someone to scare the s..t out of him. JMHO


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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The police figured it was just a phase of grief and that the cancer docs would know what to do.
Doc said call 911, but he's taken off in his car and I don't know where he went. I guess the cops could put out apb and find him for a chat.
Lord knows how he'll be when he gets back home from that though.
I'm afraid of that part.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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Oh CM, my heart is going out to you. Glad you called the police and reported his threats. If he brings home a gun, please do whatever is necessary to ensure your safety and the safety of family. Also, I hate to bring this up, but as a person who lost a dad and father-in-law to suicide, that is also a possibility, especially if a gun is in the home. Both my dad and father committed suicide due to pain and/or chronic illness. They were in their 60s and 70s repectively. I don't recall seeing ages on your posts but just want you to have a heads up on that possiblity.

If you ask him point blank to share his thoughts and feelings about his condition, what he wants, what he expects, do you think he will answer? While a conversation about death is uncomfortable, I think it's important for you to know exactly where he stands and also to make sure he can commit to not harming you, your child and himself.

Just want to stress again the importance of protecting yourself and your child.

D



Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
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D - I am so sorry to learn of your losses. I will definitely take action should he bring home any firearm. I will try to approach the subject of suicide with him. I know that he walks around saying "just kill me" all the time, so the thought must have passed through his mind. He is 53.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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Your county should have a Community Mental Health Agency. They are the ones that are able and responsible for doing a mental health committment. They at least can let you know if he meets the criteria for a committment. A committment is usually for at least 72 hours, where he can be evaluated and started on medication. The local hospital will know who serves your county. Ones the paper work is filled out law enforcement then has the authority to pick him up. Praying that he will get the help he needs to deal with what lies ahead.

Sharon


Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
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Well... not a hospital, but he's now in jail til monday morning. Its been a crazy freaking night of mood swings accusations and misunderstandings that ended with me pinned to a wall scared out of my mind and then him leaving before the police could arrive.
THEN he calls and wants to talk things out with me.
Very long story short, he's locked up until he sees a judge Monday morning. Told me I was a psycho b**** as they cuffed him.
I am dreading Monday afternoon. I am sad for the man I love, and terrified of the man he became tonight. But at least we are all safe for tonight.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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and i feel like i am wrong for doing this to him on top of all he is facing... i NEVER thought i would be this girl.
This girl, scared out of her mind, and now feeling sorry for the one that scares her.
But cancer complicates everything i suppose...


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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OMG, that is just heartbreaking to hear how he is treating you and how the other caretakers are being treated. I can't imagine. Maybe they need to have a taste of being left to their own to talk to the walls like myself and others. My daughter was a great caregiver during my treatment, but as soon as I was done she was off with her life. And I don't blame her.

I know my family loves me but they don't want to be saddled with my problems either. As an example, we went to a basketball game today. My sister was complaining she should be doing Christmas shopping instead of being at the game. I said, because it's true, that the only reason I had mine done was because I tried to get something each time I was out for a doctor's visit or something because I didn't know if I would be here for Christmas. They immediately shut me off telling me not to talk like that. In other words, don't put a cloud on their happy lives like a Debbie Downer.

Your boyfriends, husbands, sons, sisters, whatever, should be so fortunate to have a person trying to care for them. I just feel terrible that you are being abused. And I don't blame you for being scared CM. He will probably be a terror when he's let out. Dang - don't even know what to tell you. What a shame.


BOT-SCC Partial glossectomy 7/16/09.
Stage IV, Rt ND 10/2/09.
Teeth out 11/5/09.
Port/peg in, 11/20/09.
7 wks rad & chemo, end 1/22/10
lung, colon biopsies 1/9/11 - both cancer
colon resect surg 1/10/11
Folfox + Avastin - discontinued 6/11
lung surgery 3/13/12, 5/1/12
mets to liver and bones
passed away 9/4/13
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Stand firm, don't waiver, you did the right thing. You must care for yourself first. If you don't you won't be able to care for your children or him.


CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11
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CM - I agree with Gerri - You certainly did the right thing and you MUST take care of yourself. I don't have experience as CG to a husband, but my ex-husband was an alcoholic and there were many times when I had to rush out of the house with 3 children and find a safe place to stay. I didn't have relatives or friends that I could call on (I was always too ashamed to let anyone know how we were being treated) and I usually ended up at a motel until the "storm" of his alcoholic wrath passed. You have to take practical steps, even if his "good side" has returned. If it has returned tomorrow, make sure you extract a promise in front of others that there will be NO guns. Make sure you have a bag packed with clothes or necessities in it in case you have to leave in a hurry. Hide the check book, get your own checking account, find a secret place for any cash you can put aside, extra keys, etc. Check with the doctor to see if perhaps his meds may be affecting his mood. Some meds do bring on depression or suicidal thoughts. And cancer can certainly make anyone depressed or angry. But most important are the steps you take to keep you and your children safe. I hope that tomorrow turns out safe and well for you and everyone in your family. Please let us know how it goes.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Make sure that EVERYONE involved from the Judge on down knows what you know. Hopefully the Judge can hold him over and refer him for a psych exam. Call the police today and see what influence you can have in this short time frame.

Killing himself is one thing but killing innocent people around him is quite another.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Monday the judge will probably order a Mental Health exam and hopefully a committment. It is important to remember that this is not something you did TO him, it is something he has done to himself by the choices that he has made. Sometimes people need a committment before they are willing to seek help.

Sharon


Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
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Im sorry to read about how things snowballed into a huge mess yesterday. Most important thing is that everyone is safe. Wishing you good luck tomorrow. I hope that your husband comes to his senses and realizes what he has done. He must be suffering so much as Im sure you are as well. May your family find peace and the ability to move past this.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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CM, Thank God he went jail and didn't do serious harm to you or your family. Hopefully the judge ordered the psych exam. I am also wondering at this point if his head has been scanned? Is it possible that the cancer has made it way to the brain? The meds could contribute to the mood swings and irrational thoughts as well as drinking alcohol. Both Wheels and Ann-Marie are spot on.

Another possiblity is that Matt has resigned himself to a death of this cancer and the anger is part of his grief. And fear is very very often displayed by anger. If he comes home, perhaps remembering that his anger is just part of his coping, you can avoid taking things personally and just offer understanding. That said, your safety and the saftey of your children are priority one and trumps anything else.

Please let us hear from you. Feel free to call me if you like.

Dodie


Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
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omg...how bad is this? men. really? and why haven't we heard from her today? it is Monday and he did get out. has anyone spoken to her? it's 717pm est she should have posted something.


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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I'm so sorry that it's taken me this long to post that I am okay and he is out. I think I slept two hours all weekend.
The judge here was only interested in guilty or innocent pleas today so, Matt plead not guilty and was automatically given orders to stay 500 feet away from my son and I until his court date in February.
I was like SERIOUSLY????? Time is too precious to waste months AND no freaking way am I missing a doc appointment with him. I tried talking to the court clerk, she put me on hold for two seconds only to come back on the line saying that the judge didn't care that he had cancer, it stood as is.
I went to see a lawyer today who feels confident he can get the order lifted and my husband home so that I can get him help.
Penners - Its interesting that you mentioned the brain... its been a few weeks back that Matt told me his thinking had changed inside and he was shocked/afraid of some things going through his mind. He was afraid too that it may have met. to his brain already. The oncology team here seems to have him pigeonholed into "standard" occurances and have not really examined his brain. The last scan, believe it or not was merely a chest CT.
SO - Wednesday lawyer will talk to judge, in the mean time I will be setting up counselor for the family as a whole and individually. Further treatment for this wretched disease will commence likely at another facility that can better care for my husband as a whole and not just do s.o.p. and call it a day.
Much love and appreciation to all of you who are sometimes the only support I have to turn to in this crazy time.
Christine


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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Im so sorry that this has turned into such a big mess. The judge doesnt sound like they are very caring. Not everything is black and white. Im glad that everyone is alright. Its still a very sad problem for everyone involved. My prayers go out to you and your family.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Posts: 280
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AAAAAAAAHHHHHHHHHHHHHHHH!!! That man is so testing every ounce of humanity within me.
Now he is "the lowest form of life, and should die for the betterment of mankind" because he has now been to jail for the first time in his life at 53.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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Just venting here for a bit... I've scheduled a psych visit for the whole family. Best this office could do is next Monday. I may call around a bit to find something sooner. I find it hard to empathize with him because I find it more like his pride is hurt from having been detained. It is on top of his depression he already has from cancer and treatment, but D@#$! Give me a freaking break already!
Okay... that feels somewhat better... back to the phones for a earlier appointment... wish me luck.
C


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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Wondering to myself... could he just be trying to make me feel like $&!* for having him arrested?... I'm almost wishing today that I'd kept the no contact order... not too late... but I really don't want to leave him to his own devices at this point.
Waiting on the local cancer counseling group to call me back, the guy he saw before will be in Thursday. I hope he will not sink any lower between now and then.
And, I am wishing I'd set up a spare bedroom rather than let him set up his stereo and computer in our third bedroom. I sure could use some sleep this week uninterrupted.
I am trying to remind myself to count my blessings that God loves us so much that he chooses to challenge us to shape our lives and make us steadfast.(James ch1 for any curious)
I've not practiced religion in a long time, but its a comfort.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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Got appt for tomorrow @ 2:30 with a cancer group for both of us, but I told them if he refused, I was still definitely coming in.
I think I'll go ahead and keep the appointment with the psychiatrist next week to to discuss his anti-depressant (and mine)

I will update y'all as this feel like a scene from a soap opera now, and inquiring minds must want to know, LOL wink
(apologies for those that really don't but got sucked in anyway)




CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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I can't beleive the judge did not order a mental status evaluation, that would MAKE him go. As it stands now it is optional. Of course you can establish your own criteria....if I drop the protective order then you have to go to see the Dr. Best of luck, and yes keep us posted.

Sharon


Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
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Wow!! I cant believe what has happened this past week. I am so sorry to hear. I can believe his outlook though. My sister is close to where he is mentally and is currently cancer free. I mean what the $&&@!! Her husband does get the brunt of it. I just get the nasty one word comments and the huffing and puffing. I really really hope he goes to the appt tomorrow with you. Or even a meeting with fellow patients? Does he talk to anyone going through what he is? Seems like that's the only thing that helps my sister once in awhile. To talk to someone that's there also. Now is the tough time for him. He knows he has this spot again and he has to wait? He has been fighting and fighting this imagine the change And mental questioning he is going through to "wait and see". He still shouldn't take it out on you guys. I will never understand why the ones who are there are the support are the ones that get the blame for all this. My prayers are with you to work through this.


CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
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Another thought. At the end of my treatment I experienced what they decided was "steroid-induced psychosis/delusions", I went more than a little mad. The steroids were part of the anti-nausea regimen that I was given during chemo, I believe. I understand that bad reactions can be had from many of the other drugs that get used in these cases, such as Fentanyl. My experience didn't result in outward aggression, but as we know, everyone reacts differently to the drugs in these cases. I spent several days in the "brief intervention unit" and they gave me other medications to sort of dampen everything down (sorry, I don't recall what those were), which did work. My delusions passed.

I lack words for your situation. Whatever does happen, I hope in time you are able to feel that the disease and/or the drugs caused this to happen, and that it's not your husband.


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
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We've experienced steroid induced something... he didn't take them for long, but we referred to them as the day before the a**#$%^ comes out pills.
As the woman that loves this man and is devastated by this disease right along with him, I say 100% it's the cancer.
We'd never have these issues without all the added trauma.
I am struggling now with the choice to believe this was an isolated incident. His anger still seethes out at times. It's like living with Dr. Jekyll... two completely different creatures.
I don't know which I will find when I go to talk to my husband.
And it hurts something fierce when I really need my lover my friend to share a moment of comfort, but he's lost in a dark place.
He admits he's in a very dark place right now.
I told him I knew and that it was okay, I just would like to know if he wants help out of that place.
Anyway, he isn't coming with me to talk to the counselor today, I am going by myself, but he mentioned the possibility of going back to talk to the one he saw before.
Not much else I can say right now.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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The visit was good with the counselor yesterday. Matt did not go as I anticipated, but he was waiting for me when I came out. He'd parked next to me. Unfortunately, by that time, the counselor had no time to talk to him, but he did ask to be rescheduled with the guy he previously talked to and should be there as I type.
This has been the longest week ever. (aside from those when we are waiting for test results of course)


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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I'm so glad you are going to counseling and that Matt is also. Hopefully this will make life better for the both of you. When do you anticipate test results?

D


Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
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Test results wont be had until next month. We were told to wait for a PET scan to be scheduled mid Jan, then based on those results, they will decide how to treat him.
He's lost faith in the docs, and doesn't even want to see his radiologist ever again. Foolishly I said, why? it's not like he gave you the cancer, it isn't his fault. That lead to a discussion of how I didn't have his back anymore, and no matter what kind of rampage he goes on, I am expected to be on his side. Not these strangers who are doing him wrong.
I do not see an end in sight to our relationship woes. All I can do is hang on and support him the best I can. I'm trying to do more for myself and my son in the mean time. Just hangin on.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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aggressiveness, impulsiveness, irritability, hostility, suicidal thoughts or actions; unusual or severe mental or mood changes; worsening of depression...
Just a few of the side effects of Remeron... the anti depressant the docs put my husband on months ago... I want to believe that this is part of the craziness we've been dealing with.
I've asked him to call in for a different med anyway since he is still VERY depressed.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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