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#145107 - 01/27/12 06:44 PM and, the results are back..
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
and perhaps inevitable...
multiple lung masses, largest two being 5cm diameter, one in each. 93%pulse ox still, but he's feeling the decreased space.
Some node involvement in the chest now. Liver involved. Rib cage. Pelvis, surrounding soft tissue, and hip.

Radiation on pelvis/hip to be considered next week. Pain is too great for him to get around the house much. Doc thinks this will alleviate that pain enough to make quality of life better for the three to six months he may have left.

As I've read, and well know, we cannot "pre-grieve" although we try. How I feel hit by a bus, I just don't know... We have been lucky to stretch this into the three years that we've had together since diagnosis. He's taking it so much better than I. He said he felt like 9 months last week.

I start my new job training Monday morning. I am very tempted to call and see if I can postpone a few months, but what the heck would I do? Something to occupy my mind, just might be good.
_________________________
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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#145109 - 01/27/12 07:02 PM Re: and, the results are back.. [Re: CMMoore]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9063
Loc: PA
Im so sorry the results werent better news. I guess you are right that you cant pre-grieve. Nothing can prepare you for what will eventually come. Times like this make it harder to be the caregiver.

A new job would be a great way to keep you busy. Its a positive thing that will be helpful to you. Think of it as your own little escape. Hope you enjoy your new venture.

Best wishes with everything you both are facing.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#145129 - 01/28/12 03:50 AM Re: and, the results are back.. [Re: ChristineB]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Hugs - I'm so sorry! I would maybe see if you can do he work part time? Take care - god bless - and saying prayers!
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#145131 - 01/28/12 05:37 AM Re: and, the results are back.. [Re: Cheryld]
Kerri Offline
"Above & Beyond" Member (500+ posts)

Registered: 08/08/11
Posts: 592
Loc: MA
I'm so sorry that you've heard more bad news. I feel that we grieve throughout this whole process. We grieve each loss, poor test result, loss of function, loss of our former lives. It's not to say that the grieving you will experience in the end of life is happening now. Like Christine said, nothing can really prepare you for what is to come.

As far as your job, perhaps you can try it out and see how you handle things. You probably want to give your manager or HR rep a head's up as to what is going on in your life outside of work. Hopefully, they will be nothing other than understanding.

I wish peace and comfort to you both in the coming times. Please don't hesitate to reach out when you need a hand.

xoxo,
Kerri
_________________________
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
42 years old now...I wasn't sure I would make it! Hoping for 40 more!

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#145146 - 01/28/12 02:51 PM Re: and, the results are back.. [Re: Kerri]
penners Offline
Senior Member (100+ posts)

Registered: 05/27/10
Posts: 135
Loc: North Carolina
Christine, I am so sorry for the news you received. I think about you and Matt often and will surely keep you in my prayers.

You mentioned pre grieving and yes, there is such a thing. It's call anticipatory grief.... there are numerous psychiatric articles and hospice articles on that process. It may be helpful to know that what you are experiencing is normal. Caregivers have two "patients" the terminally ill and themselves. Caring for yourself during this time is often difficult as guilt is likely to try to rear it's ugly head.

I hope you and Matt are able to enjoy love and peace and you make this journey together. And please be easy on yourself... you've been through so much.

Love to you.

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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#145233 - 01/30/12 02:05 AM Re: and, the results are back.. [Re: penners]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Thank you for the much needed support. I am blessed knowing that you all will always be here for me when I need you most.

I am looking forward to starting work tomorrow. I haven't worked since Nov. 16th.

I have been surprised these last to days at how well Matt was handling everything. Then I realized that he's been aware this was coming and adjusting to it all along, hence the crazy moods and bizarre behavior outbreaks... makes perfect sense to me now, though it sure didn't at the time.

Love you all.

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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#145237 - 01/30/12 02:58 AM Re: and, the results are back.. [Re: CMMoore]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
So sorry Christine, but he is a fighter as he has done so for the past months. I only wait for the same I hate to say it to happen to me, the way Ron has been and gone thru just how many times can he make it before his 9 lives are done I always wonder. We are all here for you to vent and please keep us posted, enjoy each day as it comes. Peace and Love to you both
_________________________
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

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#145255 - 01/30/12 04:43 PM Re: and, the results are back.. [Re: SUEZ]
Shelley K Offline
Platinum Member (300+ posts)

Registered: 08/30/05
Posts: 307
Loc: North Hills, CA
Dear Christine,

My heart goes out to you and Matt. May you make the most of each moment you have together. I wish I had "pearls of wisdom" to share to comfort you, but just know a lot of people here care so much about you two. You are both in my prayers.

Love,

Shelley
_________________________
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.

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#145363 - 02/02/12 03:56 AM Re: and, the results are back.. [Re: Shelley K]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Work has been going well, though I feel somewhat guilty for being unavailable. He's encouraged the opportunity though.
We are awaiting record transfers from the radiation clinic so that the new docs can figure out how much has been done to the hip/pelvis already. He's had two rounds of radiation to that area already.
I spoke with hospice Monday night to find out exactly what they can do to help with the pain. They said they'd admit him to hospital while they experimented with the pain meds then discharge him to home once they found something that worked.
Of course the nursing home option is there, as well as the home visits twice a week...
I am sure we'll go thru all of that eventually, but for now.. I just want his pain to ease up.


_________________________
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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#145419 - 02/03/12 05:02 PM Re: and, the results are back.. [Re: CMMoore]
Caco Offline
Senior Member (100+ posts)

Registered: 06/24/11
Posts: 188
Loc: eastern us
CM, I do not know what Rxs Matt's had, but I do feel your pain as we are in a very similar situation. The Cap Lap trial http://clinicaltrials.gov/ct2/show/NCT01044433 may interest you. My Dad joined it in December and I can tell you it is buying good quality time and is working for now.
_________________________
Caco
CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!

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#145431 - 02/04/12 02:35 AM Re: and, the results are back.. [Re: Caco]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Thank you Caco! I will check it out
_________________________
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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#145531 - 02/07/12 07:29 PM Re: and, the results are back.. [Re: CMMoore]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
I had almost forgotten how difficult things can be. The mood swings are back in full force. I'm feeling like I cannot do anything right by him. I feel guilty for working, for walking with ease, for being "healthy"...
We've been at odds more often than not today. He blames me, I blame him... I asked "maybe, just maybe, could we both be taking things wrongly?" He says "sorry i'm still alive"...
just makes me wanna scream, and there was a time that i'd have done just that then had a good cry...
Now, I know that it isn't anything I've done and there isn't anything I CAN do about it, so I just keep to myself in my office and wait it out.
_________________________
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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#145535 - 02/07/12 08:57 PM Re: and, the results are back.. [Re: CMMoore]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
wow sounds like me and Ron's living conditions, he stays downstairs and I stay upstairs, he eventually comes up to see me and talks a bit but goes back down. But he isn't mean to me and he isn't in the position Matt is in either. It's going to be hard, he's angry, angry at the world and you are in it and you are there so he lashes out at you. Don't take it seriously and you know what, go ahead and cry and go ahead and scream because you can and I know I would! I'd scream at him and I'd cry at him and I'd show I am also angry at what is happening to the man I married and love and there is nothing I can do in this world that can change what is happening. Only God can do that and you aren't God so don't beat yourself up. Pound your fists in the air and after you got it all out go and hold on to Matt and hug him with all your heart and cry on his shoulder and let him hold you and comfort you and if he resists hold onto him harder!

I think this is what I'd do.
_________________________
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

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#145539 - 02/07/12 09:29 PM Re: and, the results are back.. [Re: Caco]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Awesome Caco... and Yes CM... it wouldn't hurt to try.... hopefully his pain management is sorted out soon. Prayers and hugs to you both.
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#145541 - 02/07/12 10:23 PM Re: and, the results are back.. [Re: Cheryld]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
I almost wish we had two stories Suez, I'd be using it for sure!
I'm not sleeping worth a damn anyway, and it sure doesn't help when he's having a bad night too...
He just got home from radiation consult, the previous records didn't get to the new doc until this morning so she doesn't know yet what she can do, they just did CT scans and such to determine the area that needs the radiation.
I am a bit concerned about this since he's already had two courses of radiation to the area, and they were reluctant to do the second. Not to mention he fell the other day! Just had the leg go out and spiraled to the floor. Ended up with abrasions on his forehead, elbows, and knees.
I wish he'd just call for hospice and let them help get the pain under control. i think that he feels it's giving up to call them. i of course tried to assure him that it's not like that, and he could use them as little or as much as he needs... it's a jagged little pill to swallow i am sure.
I do think he forgets sometimes that i grieve with him. He puts on a shell of anger or indifference and thinks i'm just waiting for him to die... as if i am not a part of this journey.

_________________________
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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#145600 - 02/09/12 04:37 AM Re: and, the results are back.. [Re: CMMoore]
Karenj Offline
Supporting Member (50+ posts)

Registered: 12/17/10
Posts: 99
Loc: Michigan
Hi Caroline
I haven't been on this site recently and just caught up with your posts. I can feel your pain and am so sad for what you are going through. Emmett is doing okay but I keep waiting for the next shoe to drop and he too has good and bad days emotionally. What happened to the fantasy (at least mine) of a close and loving relationship as we ride off into the sunset? Hospise told me that they wish they would be called in earlier to help, that most clients wait until the last weeks to call for probably the reason you said, afraid it means your giving up. From past experience it was the best call I made, like a weight lifted off of my shoulders. I hope you can convince Matt to accept their help soon. Know you are in my thoughts and keep moving forward one day at a time knowing you are doing everything you can for Matt.
_________________________
CG 2 Emmett,7/09 DX SCC rt tongue. T2N1M0, 1 node, marg neg.4/10 PET/CT clear, 9/10 C back. 10/10 Rad hemi, 2 tmrs mod diff. resec flr of mth. Flap 4 nodes/w/ext cap. 11/10 Peg, CX3 HD, 30 rad. 1/31 & 3/21 6/11/11 - PET/CT "activity" 9/11-all Clear. 12/11 peg out. 2/15 still all clear! 9/14 Prostate cancer treated with pencil beam proton therapy, best radiation experience. Keep it in mind as a treatment option for all tumors that can be seen including head and neck.

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#145628 - 02/09/12 08:55 PM Re: and, the results are back.. [Re: Karenj]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Been a wacky week... I am really glad that I DONT accompany him to the radiation clinic right now. His daughter visited last night and he was telling her about the new doc. He called one of the front desk ladies a "twit" and the when the doc came in, she says "I don't know what that means, but don't say it to my staff again"
I LOVE that his daughter said, "Dad, you can think that, but it's not right to say it to people".
Glad I'm not the only one thinking that isn't acceptable, no matter how much your life sucks.... It's not their fault.
He's usually on better behavior when I am with him because I will totally act like his Mom and call him out on it.

We've both been out of anti-depressant and anxiety meds for about a week now, and have been very quick to clash. Thankfully, we'll be able to fill the scripts today.
Never underestimate the value of a good prescription!!!!!
_________________________
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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#145654 - 02/10/12 02:32 PM Re: and, the results are back.. [Re: CMMoore]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
OMG, sleep is a beautiful thing! Feeling much better today, however, when Matt woke up, he could stand, but couldn't walk. I see bedside facilities in our near future. =(
_________________________
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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#145725 - 02/12/12 02:12 PM Re: and, the results are back.. [Re: CMMoore]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
I have a question to all of you who read these...

Do they help?

It helps me to be able to unload things here that I cannot say at home, but the thought came to me this morning, how is another carer going to feel coming across the bad/ugly of it all. Some things on the forum scared the ^&** outta me when I first found it. Though now that I am facing similar things they bring me comfort. Perhaps I just answered my own question. I've been feeling insecure about venting, and my situation is only going to get worse. His memory and some motor functions are going. morphine? brain met? I don't know, and likely wont find out in this final inning.
_________________________
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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#145726 - 02/12/12 03:10 PM Re: and, the results are back.. [Re: CMMoore]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Short answer: YES! Please, Please feel free to vent any and all times that you feel the need - especially when you cannot share with those close to you at home. Chances are there is someone going thru the same pain and sadness and frustration that you are. Fortunately, for CG's and survivors, this forum is "a la carte" where you can choose those posts which will be most helpful or comforting. You can choose to hold off on those that may for a time, be too scary and painful to even consider. And we will all understand. When sadness is shared, it softens the pain, just as when happiness is shared, it increases the joy. I have not been where you are now, but when I first came here to OCF, there were two unforgettable women who have been where you are now: Cookey (Liz from UK) and JAM (Amy from Arkansas). If you look up their posts/blogs, you will see the honest, raw emotion in all its ranges, all mixed in with the love and compassion they had and how they found the strength to go from day to day and share what they had with the rest of us. Stay with us. It does help.
_________________________
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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#145752 - 02/13/12 12:11 AM Re: and, the results are back.. [Re: Anne-Marie]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
((((Anne-Marie))) Thanks lady.
And all of you!

I had a terrible day yesterday, his kids came over and he was just brutal! Acted like I do NOTHING to take care of him. At one point he even said "my caregiver hasn't fed me yet"... He'd been awake thirty minutes and I spent that just trying to get him to pee and put clothes on him! He was yelling at me over stupid stuff and eventually I just walked out. Wandered the local grocery as long as possible before coming back.
I was ready to tear into him for treating me that way, but I think his daughters might have done that for me. He didn't ever actually apologize, but he was civil, and sometimes that's as close as it gets.
His mind is slipping a bit. Or mine is. Who knows. We have a mystery prescription pick up/drop off that neither of us remember doing. Although I recall seeing him come home from radiation two days with scripts, he only remembers doing it once. Adamantly, HE DID NOT do it.
I just said, okay, I guess I could be losing my mind, whatever.
His strength is basically GONE. I dressed him for his daughters visit in a sweatshirt and shorts, and after about 5 minutes he told me the shirt was too heavy to move in.
I said "OMG! Butch up will you! It's just a f(*(^* sweatshirt!"
----(classic denial, I want my husband to function!!!)
He then said that it might be time for me to go because things will only get worse.
I wonder if hearing confirmation that he has so little time left has caused him to just sink into it. do you know what i mean? like he's taken the last deep sigh and is just waiting for the inevitable.
It's really REALLY difficult to watch his decline. It's been several weeks since his hip has been a bother, but now he's barely able to walk, fights to maintain bladder control, I am SO ready to get some help from hospice, if nothing else just in the medical equipment that they can bring to help him get around and take care of daily duties easier.
He seems determined to wait for some reason.
Can I call the doc about it?
I've asked him to sign medical power of attorney forms, but he's always had to have a grip on things, he couldn't let me have that kind of control.
I will make it a point to call his doc and ask, as well as talk to him, if I can find him awake and lucid for long enough.

Thanks for listening.
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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#145755 - 02/13/12 01:15 AM Re: and, the results are back.. [Re: CMMoore]
wallyswife Offline
Senior Member (100+ posts)

Registered: 10/09/07
Posts: 104
Loc: London, Ont.
Oh my, and do you ever need some help from hospice by the sound of things. I should think his doctor could help convince your husband that hospice is in his best interests at this stage of his illness. Perhaps an admission for symptom management and if able, to return home with supports in place. This is an extremely difficult time for both of you and I hope you are able to get the help you need to make your remaining days together pain free and peaceful.
_________________________
Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.

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#145766 - 02/13/12 05:32 AM Re: and, the results are back.. [Re: wallyswife]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
I've always heard of good things about hospice, but one thing that sticks in my mind is when I heard someone say that going with the hospice decision does not always equate with a death sentence and that some hospice patients actually do get better and come out of hospice to go on to a normal recovery. Something similar happened to my ex-husband when he was very close to his demise. He was in the hospital on life support and had made known his "do not resuscitate" wish. Our 3 children, his present wife and other relatives were all around his hospital bed when the nurse came in to remove the life support. Well, wouldn't you know - he didn't expire as everyone, including him, expected! He was well enough to go home, with his wife #2 (I'm #1) and enjoy going to Walmart in his beloved pick-up truck. They had another two weeks to enjoy some happy, peaceful moments.

Christine, I hope that whatever is in your future, that you and your husband will have some happy, peaceful moments to share.
_________________________
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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#145778 - 02/13/12 04:33 PM Re: and, the results are back.. [Re: Anne-Marie]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 941
Loc: Ohio
Christine, I think that you are doing everything that is humanly possible for you to to, and hope that you can call in the reserves in the form of hospice very soon. As a religious person, my mother was able to say, let go, let God at the most difficult times. My thoughts are with you.
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#145787 - 02/13/12 10:30 PM Re: and, the results are back.. [Re: Maria]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
I will definitely be reaching out for help this week. I haven't had a moment to myself yet today. Woke up, took my son to school, got breakfast for Matt and sat with him until work at 9. 11 break was spent refreshing his drinks, emptying containers, giving meds. lunch break was spent sponge bathing due to terrible sweats that he's been having. mid bath, his ride to the hospital shows up (early) so I rushed to finish, get him dressed, then help him to the van since it snowed here I didn't want to risk him falling. I then had 10 minutes to grab a drink, throw the bedding in the wash and get back to work. He gets home before my next break and it's spent explaining why the bedding is in the dryer and not on the bed because he is freezing.
I grabbed the temp cover that I ALREADY had laying on the bed and covered him up.
PLEASE GOD, let him sleep a while 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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#145790 - 02/13/12 10:55 PM Re: and, the results are back.. [Re: CMMoore]
Shelley K Offline
Platinum Member (300+ posts)

Registered: 08/30/05
Posts: 307
Loc: North Hills, CA
You poor thing Christine...my heart just goes out to you!! I'm glad to see you will be reaching out for help because you need it bad!! Continuing thoughts and prayers for you and Matt.

Hugs,

Shelley
_________________________
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.

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#145793 - 02/14/12 12:00 AM Re: and, the results are back.. [Re: Shelley K]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
You really do need a break, Christine . . . You are doing such a tremendous caregiver job. A little help (or maybe a lot) for both you and Matt would help you both to know you are not alone on this difficult path you are traveling. And if things can be made a little easier for you and Matt - there may be more time for some sweet moments for the two of you. I sure hope so.
_________________________
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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#145808 - 02/14/12 03:12 AM Re: and, the results are back.. [Re: Anne-Marie]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Radiation Oncologist found mass in spine today. Once the hip treatment starts to benefit and pain lessens she plans to begin radiating his spine around the shoulder blades too.
Will double his time at the clinic.
_________________________
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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#145815 - 02/14/12 03:53 AM Re: and, the results are back.. [Re: CMMoore]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9063
Loc: PA
Im sorry you and your husband are going thru so much. Poor guy must be in some terrible pain. Hope he gets some help when the radiation starts.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#145822 - 02/14/12 05:39 AM Re: and, the results are back.. [Re: ChristineB]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
He is definitely in some major pain. I feel at a loss. I don't know HOW to help him. I feel like my timing is always 'off'.
If I go to hug he's gotta shift position, if I want to talk, he's too tired or can't hear me, etc.
I spent a few hours just listening to music tonight, and that was definitely good.

I brought up hospice to him and he says he doesn't see what benefit they'd be.
I asked if he would like me to tell him how they can help, and he got upset. I tried to tell him I didn't feel like I was enough to care for him but I started tearing up and he goes, O great, here we go again...
Hence the few hours alone with music.

God never promised life would be easy.
_________________________
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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#145826 - 02/14/12 12:43 PM Re: and, the results are back.. [Re: CMMoore]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
I wish there was something I could say that would just fix everything or just help a little. I'm sure the pain is affecting Matt's ability to be able to hang onto some measure of control when so much is out of his control and he can't help but lash out at someone he loves. I can see why he may not want to see the benefit that hospice could be since it might translate to him as giving up another measure of his control over his life. I have not been in your shoes, Christine - but my son and I did go thru a point where anytime I tried to touch or kiss him or hold him, it was too painful for him. Any sound, or light or movement hurt. And he would not eat. What helped us was when I took more of a "nurse from Hell" attitude to get him to eat. Right after yelling at him, I left so he would not see me crying uncontrollably all the way home. I sure hope someone else can weigh in on this because I would not want to suggest anything that could make things worse. I just wonder if Matt would take a suggestion of hospice help more easily from some other family member or friend - especially if it was mentioned as help for YOU?
_________________________
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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#145834 - 02/14/12 01:56 PM Re: and, the results are back.. [Re: Anne-Marie]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 941
Loc: Ohio
We're pulling for you, Christine. I think that Anne-Marie's idea of having another family member bring up the hospice idea is worth a try.
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#145844 - 02/14/12 04:29 PM Re: and, the results are back.. [Re: Maria]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
My wonderful stepdaughter sent me this verse via text this morning...
1 Corinthians 13:7-8
Love bears all things, believes all things, hopes all things, endures all things.
Love never ends. As for prophecies, they will pass away: as for tongues they will cease: as for knowledge, it will pass away


Regardless of the madness, sadness, and craziness that we endure, LOVE remains.

Happy Valentines to all of you.

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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#145845 - 02/14/12 04:35 PM Re: and, the results are back.. [Re: Maria]
Shelley K Offline
Platinum Member (300+ posts)

Registered: 08/30/05
Posts: 307
Loc: North Hills, CA
I have an idea...why don't you call hospice but don't tell Matt it's hospice. Just tell him you need some help in caring for him. I've heard so many wonderful things about hospice care and I'm sure it will be a relief on you. It sounds like he's freaking out when he hears the word hospice, so why does he have to know?? Just a thought...

Hugs,

Shelley
_________________________
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.

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#145856 - 02/14/12 07:27 PM Re: and, the results are back.. [Re: Shelley K]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
Yes it's to help you Christine, you can't do this all by yourself now, trying to work and take care of him, not easy. Tell him that, tell him YOU need the help to take care of him to make him comfortable and warm all the time. You will still be there of course but you will have a "helper" to assist you say if you gotta go potty or somethng they will keep an eye on him or when you need a shower you know. Tell him it's not just for him its for BOTH of you.
Good Luck Christine, try to hold them tears back if he gets pissy like that when you cry I'd try and be stone cold actually when telling him about getting help. Stay Strong honey!
_________________________
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

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#145857 - 02/14/12 07:28 PM Re: and, the results are back.. [Re: Shelley K]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
it requires a doc referral, which he has to request, then it requires an intake interview at the hospice location... no way around him knowing.
I am having a better day today. I am trying to remind myself more often to live in the moment and just let the things that bother me roll away.
_________________________
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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#145865 - 02/14/12 09:04 PM Re: and, the results are back.. [Re: CMMoore]
ZendaT Offline
Senior Member (100+ posts)

Registered: 02/20/05
Posts: 117
Loc: Mesa, Arizona
Hospice has expertise in pain management. Perhaps Matt would be willing to speak with hospice about what they might be able to provide to him for pain control.
_________________________
Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.

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#145870 - 02/14/12 09:23 PM Re: and, the results are back.. [Re: ZendaT]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
He has to request it? By any chance did you do a power of attorney thingy? I have the "power" for Ron and I'm not even married to him, you should be able to get that being his wife and all. See that's why I'm able to call docs and tell them stuff and let them know what Ron needs that he won't say anything about, and I am allowed to be told anything about him from nurses and docs. I had to sign alot of paperwork and I think Ron had to of course sign too. How would he be if you suggested this to him too? If I'm wording this wrong or calling what it is wrong feel free to correct me. But pretty sure it's POA. I don't know if cuz you are his wife that you need that though so...maybe you can ask doc for referral for hospice. You are legally I think cuz of marriage to be able to I think. Right?
_________________________
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

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#145878 - 02/14/12 11:13 PM Re: and, the results are back.. [Re: SUEZ]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Suez, he's refused to sign a medical POA form. I got the documents about a year ago and brought them home, I guess he doesn't trust me? Typing that(saying it out loud) makes me really sad.
=(
_________________________
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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#145880 - 02/14/12 11:24 PM Re: and, the results are back.. [Re: CMMoore]
Gabe Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Registered: 08/02/07
Posts: 1301
Loc: Sydney NSW Australia
Christine you mention a step daughter. Would he consider giving power of attourney to her? Just a thought.
I have it for my parents as they do for me.
_________________________
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family


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#145883 - 02/14/12 11:41 PM Re: and, the results are back.. [Re: Gabe]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
That is likely Gabe. I was reading a recommended form for our state and it listed primary POA and secondary POA, he may accept it if both of us are listed.

I just don't know WHEN to talk to him. On the rare occasion that he isn't in a terrible mood, if I talk about anything to do with cancer/dying/doctors, it puts him in a bad mood.

He needs to face this stuff and get it settled NOW.

I will just have to put my foot down.

Thank you all!!! Wish me luck.
_________________________
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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#145885 - 02/15/12 12:14 AM Re: and, the results are back.. [Re: CMMoore]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Christine - It seems to me that rather than "not trusting you", it's more the idea of having to relinquish control to someone else. It can be very stressful to make changes and face something unknown. We all prefer making our own choices and it feels better if we can make those choices ourselves. Perhaps there is a way that Matt would be able to have a choice that would keep him comfortable. Since he does not want to consider hospice, what if he had a choice between hospice and going to a nursing home facility? - Perhaps as a trial to see how it works? Or maybe a third choice of a Professional Nurse that could come help with his care? (If it was one of those athletic looking no-nonsense-do-what-I say types, he might realize what a sweetie caregiver you are!)
_________________________
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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#145920 - 02/15/12 02:53 PM Re: and, the results are back.. [Re: Anne-Marie]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
I put on my armor and attitude last night and told him he was NOT going to determine what my opinions were, and I gave him the courtesy of listening to him, he can by God do the same for me.
I also told him he was not going to leave me wondering what the hell to do and to fill out an advanced directive.
(he of course says, he brought them home, I should have filled one out) - ugh
So, I said, fine, just make me POA and I'll handle it!!!!!

And, much to my joy, he said, okay, get the form.

FINALLY!

I just had to get demanding.

Happy Wednesday everyone. Hope it's a good one.
_________________________
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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#145928 - 02/15/12 07:58 PM Re: and, the results are back.. [Re: CMMoore]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
woo hoo put that foot down woman!! You have to be strong for him, he is feeling weak and vulnerable so you have to be the stronger person, just exactly like you did! It's not giving you power to commit him or anything it's POA IF and WHEN you are needed to make a decision, I think cuz you are his wife legally you are allowed to know all about his health and care from docs or is it still protected by HIPPA? So if it is now you will be able to call the docs, tell them what is up and tell them what he needs and get thier opinion. Like I always call Ron's docs for him and I'm allowed to be told anything about him. Ron also had signed a DNR when he was sick with Non Hodgkins, when he went in this last time for surgery he said "now don't get to quick with that DNR" I wonder if we should take that out now...it was when his chances were bad. Now he's alive and kickin! Hmmm I best check on that.
Go shine your armour for the next time you'll need it and wear it proudly when you do, you have done great!!!
So proud of you!
_________________________
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

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#145933 - 02/15/12 09:04 PM Re: and, the results are back.. [Re: SUEZ]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
HIPPA is a pain in the ... we had to fill out a form to allow me info via phone if he wasn't present.

Thanks Suez for the 'flowers' so to speak. I feel better. You make a good point, he's weak, he's got no control over what is happening to him, I NEED to be in control and let him see that I've got it covered.

I'm wondering if anyone has any info on spine mets. PM me? I'll also post in a more relevant thread to find out all I can.

Love to you all,
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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#145949 - 02/16/12 02:51 AM Re: and, the results are back.. [Re: CMMoore]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
You, my dear,are a hero. I pray that you will be willing to share your journey with other care givers. You are truly an inspiration. Really, I was so blessed to read all this and see how you are working through it and handling everything. I can only hope, that if I need to be, I can do as good of a job.
Blessings,
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#145958 - 02/16/12 04:30 AM Re: and, the results are back.. [Re: Anne-Marie]
Sandy177 Offline
"Above & Beyond" Member (500+ posts)

Registered: 01/17/11
Posts: 571
Loc: California
Hi Chris,

Morphine and brain mets do make for some really awful attitude problems. I'm sorry you are going through it. My heart is with you and Matt. You are such a loving caregiver. Matt is lucky to have you. I hope you are able to find some time to concentrate on something just for you.

I remember reading posts and steeling myself for the battle from hell. There are great gifts here. There is the immediate gift of loving family on the OCF forum who will help us through the process no matter the twists and turns. And, there's the legacy that remains from all the caregivers who have walked the path ahead of us. One of your hands receives the gift and one of your hand gives the gift. Thank you for helping me when I truly needed a sister, a confidant, a friend, and an OC tour guide.

I hope Matt agrees to allow hospice to come in and help. It really is a godsend. It does not mean that anyone is giving up on him. It just means that there is a need that should be filled. I'm sure it would help relieve a great deal of stress for you and for him.

Take care, dear girl.

Sending a hug your way.

Love,

Sandy
xoxox



Edited by Sandy177 (02/16/12 04:31 AM)
_________________________
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.

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#146033 - 02/17/12 02:44 PM Re: and, the results are back.. [Re: Sandy177]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
I am still working on convincing him to call hospice . He's already fallen three times today. First was 330 this morning, he just fell out of bed and hit his head on the dresser. Then fell once on the way to the restroom, and again on the way back at 7.
I would think he'd get tired of falling down and seek help.
I told him that the spine mets can affect his ability to walk. Perhaps he will think about it differently.
They also seem to be radiating his sternum now?
I really dislike not making it to the doc meetings for now.
I will have to call this new doc and find out just what the hell she is doing.
_________________________
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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#146036 - 02/17/12 03:46 PM Re: and, the results are back.. [Re: CMMoore]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 941
Loc: Ohio
Hi, Christine,
I know that this is stating the obvious, but please make sure that the doctor knows about the multiple falls within a few - I think this may be an intervention red flag for them. Thoughts and prayers with you.
Maria
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#146140 - 02/19/12 06:30 AM Re: and, the results are back.. [Re: Maria]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
We had quite the amusing outing Friday night. Matt's first real experience with those motorized carts at the local warehouse club. He failed to follow me, and went all over the place, not listening to directions... it was at the time disheartening, but I can really laugh about it now.
Again at an office store, driving in circles around the desks set up, as if trying to find his way out of a maze.
He's out of it a lot. I have learned to just make some sound of acknowledgement when he says bizarre stuff anymore.
It's easier than trying to set him straight, which is usually an impossible feat.
Mobility is still an issue. I really can't tell if the radiation to the hip is helping, but the spinal met. could be causing problems moving his leg too.
It's just a guess at this point as to what area causes what.
His daughter that lives a few hours away has said she will be making trips to see him every other week, and his local daughter is still visiting frequently. I LOVE having some local support and they usually back me up when it's needed.

When the doc says that time is limited, it's hard to decide when to worry. Like tonight, he seems to have a fever. In the past, I'd be prodding with a thermometer, pushing tylenol, and grabbing a cold rag asap. I touched his face and mentioned the warmth, and he shrugged me off. The concern wasn't wanted.
Am I slacking on my duties if I don't sweat the 'small' stuff at this point?
_________________________
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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#146147 - 02/19/12 12:34 PM Re: and, the results are back.. [Re: CMMoore]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Sounds like Matt had a great time with the motorized cart! I can just picture him zipping around the store and enjoying the control it afforded him. grin I'm so glad you have some local support with the daughters. I'm sure it helps Matt to feel very well cared for, and the shared caring is good for you, as well. Sometimes caregivers need caregivers, too! Christine, you are definitely NOT slacking in your duties to "sweat the small stuff". My son sometimes felt I was "hovering" too much, also known as "helicopter Mom". Whatever feelings you have as caregiver are important so if you adopt the "Never let them see you sweat" mode at times with Matt in following his lead, you could still keep it in mind when you report the things that concern you to the doctor (like falling, hi temp, etc.) You are an awesome CG!
_________________________
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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#146207 - 02/20/12 02:55 PM Re: and, the results are back.. [Re: Anne-Marie]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
I finally get him to agree to the phone call to hospice, and he tells me he will meet with the nurse to get information, but he wants me GONE while they talk. WTF????

I am SO hurt 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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#146216 - 02/20/12 05:38 PM Re: and, the results are back.. [Re: CMMoore]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
I tried to ask for details, and he just said he was NOT going to talk about it with me. End of story. Either he's very confused about how to protect my feelings, or he's a complete bastard.

Much as I love him, I want to say he's just confused about what I can handle.
Although, he's said before that he didn't want hospice because it was just to help me.
What am I supposed to "earn" by working my ass of?
I was up until almost 3 am trying to finish my day.
He has no idea what I do because he SLEEPS through it all.
_________________________
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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#146217 - 02/20/12 08:03 PM Re: and, the results are back.. [Re: CMMoore]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
i am completely overreacting. I know this. He loves me, he needs me. So it's got to be something that he thinks I can't bear, or that he fears will make me think less of him.

Today he seems mentally clear, but unable to identify things right in front of him.
His glasses, his crutch... I had to point them out to be found.

I suppose that a met could have already made it to his brain.
This ticking of time goes by so swiftly when there's only so much left.
_________________________
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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#146221 - 02/20/12 09:02 PM Re: and, the results are back.. [Re: CMMoore]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
Oh Christine...only Matt knows what's really going on inside his head right now and he won't let it out. I hope that he will be able to stop being stubborn and making you feel bad soon before it's too late and you will remember him being mean to you...maybe try explaining that to him? Tell him you want to remember him as the loving man you married and not this way, tell him you understand he is probably scared and putting up this mean defense to protect you. Let him know it's OK to be mad and angry and sad of course and you are here to hold his hand thru it all and be there for him. But who really knows what it is causing if it has gone to the brain...I'm so sorry.
_________________________
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

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#146223 - 02/20/12 10:13 PM Re: and, the results are back.. [Re: SUEZ]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Christine - you are right, he does love you and it is so difficult for him to take in everything that is happening to him. I think it is just as you say - that it's something he thinks your can't bear. And that's why he rather you not be there when he talks to the hospice. He's probably afraid he'll break down or get some news or suggestions that will upset both of you. Men just don't like to appear weak in front of those they love. I would allow him what he requests. I know it's not the same, but there were many times when I would hide in the bathroom when I needed to make phone call re my son. I just didn't want him to hear the quiver in my voice that held back the tears while I asked about something re his care. It is such a sad and difficult journey that you are both on. Sometimes there are just no adequate or soothing words. Sometimes it's just a look, or a touch that can convey how much you really care.
_________________________
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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#146238 - 02/21/12 03:05 AM Re: and, the results are back.. [Re: Anne-Marie]
penners Offline
Senior Member (100+ posts)

Registered: 05/27/10
Posts: 135
Loc: North Carolina
Christine, I think about you and Matt more than you will ever know and continue to keep you in my prayers. Just wanted to offer another perspective on Matt wanting his meeting with hospice to be private... I can only imagine the thoughts Matt may be having about hospice which is considered by most to be end of life care. At least in NC one has to be within 90 days of death for hospice to even get involved. IF Matt is struggling with his thoughts and/or beliefs about the last weeks/months of his life, he may have some questions or wishes that he doesn't know if others will understand or support. I'm sure his motives for privacy are not meant in a negative way toward you.

Sometimes people like to put on a brave face for their loved ones and do try to "protect them" by not discussing their fears, wishes, questions about death. This is gonna sound stereotypical but I strongly suspect that many men have a real issue with showing what they perceive as "unmanly" emotions. Like Ann Marie said, they don't want to appear "weak".

Talking about a terminal illness or impending death is very uncomfortable for many people. They don't know what to say or if they should say anything. It's not something we are taught how to handle. Many just walk around the elephant in the living room and pretend it isn't there. Some patients like to live in denial and refuse to believe they are dying (a livelong friend of mine who died of breast cancer with mets to liver, lung and brain was like that - she got madder than hell at me when I implied a month before her death that she was not going to live). Others want to make sure their wishes are honored and respected.

I don't know what kind of conversations you have had with Matt or if he is even willing to engage in that type conversation, but you can let him know that while you dont understand his need for privacy that you respect it, and if you feel emotionally comfortable, you can assure him that you will be there for him without judgement if he wants to talk about his fears, wishes, etc.

Remember, you and Matt are both doing the very best you can with a terrible situation. You are a wonderful caregiver and dont' ever question that. But remember also that you are human and give yourself a break.

Love ya!
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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#146261 - 02/21/12 05:32 PM Re: and, the results are back.. [Re: penners]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
The nurse came this morning to talk to Matt. His BIG issue was that he was afraid that if some NEW treatment became available that he wouldn't be able to come out of hospice and try out that new treatment.
He was afraid that it was a one time option.
She cleared up all of his questions.

Last night, he did tell me that he'd been acting like a complete horse's ass regarding the whole thing and that I needed to be involved in all steps along the way. (wow)

Not sure how long until she can get the equipment sent over, but soon there will be a walker, wheelchair, shower chair, bedside facilities, and oxygen. WOOHOO!!!!

The fact that HE agreed to oxygen amazed me. I am SO glad that he realized he will feel better with it.

I look forward to being able to get out of the house for a day WITH him soon!
_________________________
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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#146265 - 02/21/12 06:54 PM Re: and, the results are back.. [Re: CMMoore]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
yay!! Absolutely wonderful AND pretty much what we all said bout how he was feeling too. Probably the nurse helped him feel better about this decision and he now feels better himself and about himself. Woo hoo so happy for you both! Go out and enjoy each others company.
smile
_________________________
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

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#146266 - 02/21/12 07:05 PM Re: and, the results are back.. [Re: SUEZ]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
That's wonderful news! So glad the nurse helped him feel better. Sounds like he was pretty sweet to you, too. Hope things continue to get a lot easier for both of you.
_________________________
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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#146270 - 02/21/12 07:43 PM Re: and, the results are back.. [Re: Anne-Marie]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Equipment was just delivered to our house! Talk about service! OMG!

So, upside downside.... he can't operate the tv remote anymore, has no idea what the buttons do.
Can't operate his fancy "smart" phone anymore.
Tried to drive his wheelchair down the front steps to treatment van a few minutes ago. I had to stop him and tell him to get out of the way so I could move it to the ground level.
Mobility is going to be a dangerous thing.


Upside... I found an adorable mini pinscher that I am considering adopting to be my "friend" through this all.

He actually spat on the floor in disgust when I mentioned it to him, but she is for ME and I am doing it.

Love you you all, and peace.

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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#146291 - 02/22/12 03:10 AM Re: and, the results are back.. [Re: CMMoore]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
That really was quick service on the equipment! I'm sure it will make things a little easier. And I'll bet having a new little "friend" around will help, too. Let us know how the adoption 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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#146381 - 02/25/12 05:02 AM Re: and, the results are back.. [Re: Anne-Marie]
Sandy177 Offline
"Above & Beyond" Member (500+ posts)

Registered: 01/17/11
Posts: 571
Loc: California
Please try to remember what Matt was like before OC and let those memories be the ones that define your relationship. He isn't the man with whom you fell in love. He hasn't been the same man since he was diagnosed. Heck, J isn't the same person after his ordeal and he turned up as misdiagnosed. I'll wager that every step on Matt's journey has had some impact on his emotions and has caused a negative psychological reaction.

If you add the psychological turmoil to the physical spread of the disease and the effects of treatment and pain meds, it is enough to turn the man you love into an acquaintance who you really don't like very much...or worse, an antagonist who is about as connected to you as a surly stranger. It's not fun. I can imagine how much of a challenge it must be and I'm terribly sorry you are having to experience it. On top of everything else, he's a man. They are offended by their own weakness sometimes. They can't bear for the people who matter most to them to see them as weak or needy.


My sister was married 24 years before her husband lost his 4 year fight with lung cancer. They were so much in love and were considered a match made in heaven. Then, the cancer and the treatment and pain meds took much of it away. He was awful to her. It broke my heart to hear her repeat what he said to her and to hear how he treated her. But, we all understood what was happening. He was being taken away from her and us. We couldn't judge him. He wasn't the same man anymore. Cancer had taken him away quite a while before his actual death.

It is odd to mourn a loss before it occurs. My father-in-law used to call our house several times a day. When the hallucinations and odd behavior from the cancer mets and pain meds became too much, my mother-in-law took the phone away. I immediately noticed. It was then, with him becoming out of touch with us, that I started to mourn losing him.

Cancer always takes them before we are ready to let them go. Often, cancer takes them before their body is ready to let them go, as well.

My thoughts and prayers are with you and Matt. I'm glad you have decided to get the dog. It will bring you lots of joy, a nice diversion, and the loving loyalty that you need right now.

xoxox
Sandy
_________________________
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.

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#146472 - 02/28/12 01:59 AM Re: and, the results are back.. [Re: Sandy177]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Sandy - you phrased that right on, cancer does take them before their body is ready to let go.... however, his body is defintiely letting him down lately.
I cannot count the falls he has taken. And I fear that he isn't getting adequate care right now with me working, even if I am at home.
He is stubborn and willfull still wanting to do for himself and when he falls or has an accident he gets pi&&ED.
I am not sure what to do, but the hospice social worker comes wednesday and I will get some advice.
_________________________
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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#146474 - 02/28/12 02:58 AM Re: and, the results are back.. [Re: CMMoore]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9063
Loc: PA
Christine, I always read your posts but dont always comment. I cant imagine how difficult this is for you. Just know you are a great caregiver. Im sure its very frustrating. Ive always thought of caregivers as true angels here on earth. You certainly fit that bill. Good luck with your Wed. meeting.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#146476 - 02/28/12 03:06 AM Re: and, the results are back.. [Re: ChristineB]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
me too. I have been keeping up with your posts and crying with you. I'm so sorry it has come to this, but you are teaching us caregivers along the way. Thank you for sharing your journey with us. You are a warrior. Know that you are loved!!
Blessings,
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#146477 - 02/28/12 03:34 AM Re: and, the results are back.. [Re: CMMoore]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA



Edited by CMMoore (02/28/12 05:52 AM)
Edit Reason: tmi
_________________________
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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#146481 - 02/28/12 05:56 AM Re: and, the results are back.. [Re: CMMoore]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
I feel inadequate to teach anyone, but if anything good can come of this journey, I praise God for it.
It's good to know you are there. I appreciate the comments, even the ones when you don't know what to say. It is good to know I am not alone.

Love,
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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#146483 - 02/28/12 06:17 AM Re: and, the results are back.. [Re: CMMoore]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
I have a question to put out here to everyone...

How informed would you make the daughters (in my situation)?
The youngest is holding onto her faith and praying with her church group, the eldest seems to really be in denial. If he fails to complete a sentence or gets jumbled up it will make her tear up.
Should I tell her, that's the easy stuff?
_________________________
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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#146489 - 02/28/12 06:48 AM Re: and, the results are back.. [Re: CMMoore]
Gabe Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Registered: 08/02/07
Posts: 1301
Loc: Sydney NSW Australia
I also am reading everything you post and am so sorry for what you are going through....I am just wondering how old are these girls Christine?
Sending you another big {{{hug}}}
_________________________
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family


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#146492 - 02/28/12 07:49 AM Re: and, the results are back.. [Re: Gabe]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
25 and 28, the youngest is married, the oldest is a single mother
_________________________
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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#146494 - 02/28/12 09:09 AM Re: and, the results are back.. [Re: CMMoore]
klo Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 05/18/10
Posts: 638
Loc: Sydney Australia
Hi Christine

Firstly, so sorry that you are going through this, but I see your family and faith are carrying you through with dignity and grace.

Your question regarding your children is a difficult one, particularly as I have no children. So I am going to answer using my own situation when it was my Alex who I wanted to protect from the ugly truth. Just in case this response turns into an epic (as my posts mostly do) the short answer to your question is: as much as they ask for and as much as you feel comfortable to give.

Alex and I had some awkward silences at the time of diagnosis whilst we both contemplated the unthinkable but didn't want to raise it for fear of upsetting/destroying the other. Alex wanted to talk but didn't know how I would cope and I was fearful of forcing Alex into thoughts that he might not have considered and which might cause him to fall apart. The thing that I think might be common to your situation and ours is that Alex felt the need to protect me when what I actually needed was to be allowed to support him. And Alex needed permission to express his fear and guilt. To do that, we needed to address the elephant in the room.

I believe your daughters, if given the opportunity might want to step up and support you through the next few weeks and months.

If it were me (and remember I don't have kids), I think I would say something that gives them permission to talk or ask questions without fear of upsetting you and then proceed with an eye on how they are reacting to the information. I think you will be able to tell how much information they need by their questions and reactions.

I would also be inclined to speak to each separately at first as it may be that one doesn't want to know and the other wants all the detail. Then they can go off and discuss everything together (which I bet they have already done).
_________________________
Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight

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#146495 - 02/28/12 11:26 AM Re: and, the results are back.. [Re: klo]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Christine - I think that Karen has shed great insight on this and I would agree that saying something to your daughters in the way of allowing them to ask questions would be helpful. In softening whatever you say to them, perhaps you could include something positive like the help that hospice is bringing to you and Matt. Everyone is different in how they react to things and how they grieve and you know your children best. Being in "denial" is a normal response and needs to be allowed. I think knowing is better than not knowing the real situation. We've all felt the anguish of not knowing and waiting for results of some test or procedure. And of being comforted when others joined us to help us through it. The tears shed need to be acknowledged and shared to make the sadness a little lighter to bear. Whatever information you share with your daughters will make it easier for the three of you to support each other in whatever way is needed. Hoping for some peaceful moments of comfort for you and Matt and your girls.
_________________________
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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#146508 - 02/28/12 03:26 PM Re: and, the results are back.. [Re: Anne-Marie]
slim Offline
Platinum Member (300+ posts)

Registered: 01/23/09
Posts: 475
Loc: PA
Christine, I think you should sit down with the girls and have an honest conversation about what is going on. Let them ask all the questions they have and answer them to the best of your ability. If they aren't aware of the situation and what is going on they might resent you if something happens. My kids are 24 and 26 and I am divorced from their father. If something was going on with their father I know that they would want their step-mom to give them all the information she has. I'm so sorry that you are going through this but appreciate your honesty.

As morbid as it is when my mom was dying from pancreatic cancer I wanted to know the stages and what to expect. I know that every patient and situation is different but it helps us caregivers to hear the good, the bad and the ugly.
_________________________
Wanda (47) caregiver to husband John (56) age at diag.
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-13 - HBO (30 dives) tooth extraction

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#146539 - 02/29/12 04:03 AM Re: and, the results are back.. [Re: slim]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
so, the daughter thing took care of itself today with the oldest, she stopped by to visit...
first of all, he would NOT get up and going today, blew of radiation completely, wouldn't answer the phone, etc...
So daughter comes over in the evening, I am already working my shift in the office (right next to bedroom) I hear her talking to him, then BANG... he had soiled himself in bed, she was trying to assist him up and into fresh clothes, he pulled back not wanting her to touch him, and he fell, yet again. EVERY day he is falling.
Stubborn as a jack*** for sure.
She did stay to get him back to rights and even cleaned the kitchen for me while she was here. Plans on being back on Thurs.
So glad she was here today.
_________________________
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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#146549 - 02/29/12 06:10 AM Re: and, the results are back.. [Re: CMMoore]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
On a side note ladies and gentlemen. I am terrified. Regardless of the strong front I try and maintain. I am so scared. I find myself crying more and more often.
I thankfully have no work today (wed) and I will get to get out of the house with Matt for a while.
_________________________
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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#146551 - 02/29/12 07:13 AM Re: and, the results are back.. [Re: Gabe]
misskate Offline
"Above & Beyond" Member (500+ posts)

Registered: 02/15/07
Posts: 782
Loc: San Francisco,CA
Sending you love and strength. I sure wish you weren't going through this awful experience. Hoping some how some way you will have some relief. I am glad the daughters are now more aware of the gravity of this situation. I am hopeful that they will now realize that they must support you both during an extremely difficult time. It is hard in your 20's to have to face such an intense situation - none of thier peers are likely going through this so they have no idea how to conduct themselves and for them it is just terrifying and frightening I'm sure. This is how I felt when my mom was very ill and passed away in my 20's. It was very very difficult and sad - almost to a paralyzing degree.

xooxoxoxoxoxoox KATE
_________________________
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!

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#146554 - 02/29/12 10:29 AM Re: and, the results are back.. [Re: misskate]
klo Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 05/18/10
Posts: 638
Loc: Sydney Australia
We are too hard on ourselves sometimes and maybe a few moments of "weakness" within our trusted circle, will not only allow us to share our fears but also give others permission to share theirs.

Of course you are terrified - you wouldn't be human otherwise, You bear more burden than anyone else. If the added stress of staying strong on top of the stress of the current situation isn't enough, you also have to deal with the fear of the future which at times can feel like the greatest stress of all.

If you can't do it with trusted family member then do it with your hairdresser but find someone who will listen while you let it "all hang out". Everything. You will be amazed at how your perspective will return after you let the torrent of words, fears, resentments and tears out that you are holding back right now. If you can find someone prepared to hold you until you quit crying too, all the better.

My saviour was a work mate from 500 miles away who would ring every couple of weeks to check up on me. And every time she rang, I thought I would keep my act together and not rave on like I did last time. And every time, I would rave on for another 2 hours, just like I did last time. And every couple of weeks she would ring again and let me rave on again. Now she is the one in trouble, and I ring her every couple of weeks to check up her. And SHE raves on for a couple of hours. Do I feel resentful or think less of her? Absolutely not! I am grateful that I can pay her back and also a bit flattered that she knows that she can be honest and that I will not let her down.
_________________________
Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight

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#146565 - 02/29/12 03:50 PM Re: and, the results are back.. [Re: klo]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
Christine,
If we can't be honest on here then we are not serving the purpose for being here. Please know that our saying you are teaching us or are our hero doesn't mean we think you aren't struggling. We cry when we read your posts so we know you are living hell right now. We just want you to know that you are showing us that it can be handled and we aren't alone should this happen to us.
So glad his daughter was there to witness things first hand. That should open some eyes and make it easier on you. Physically anyway. Emotionally, just hang on. I wish I lived close by to give you a real shoulder to cry on, but I am here.
Love to you,
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#146574 - 02/29/12 09:26 PM Re: and, the results are back.. [Re: KP5]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
I wish I could be there, too, Christine - to give you a big hug and try to make things easier for you. I'm so sorry about Matt's falling. . . he is probably just trying to assert his control over something, when so much has been taken out of his control. It's good that the daughters have a better idea of what's happening and can help. We are all here anytime you need to vent or cry or scream and share your pain and frustrations. It would be good (as Karen suggested) to find someone close by with whom you can just let go and release some of the pent up feelings. . . .maybe the hospice people or the doctor who might be able to give you meds to help you get through the difficult days or moments? Please come back here often so we know how you are doing. Sending you a great big hug. . .
_________________________
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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#146575 - 02/29/12 09:31 PM Re: and, the results are back.. [Re: KP5]
tamvonk Offline
"OCF Kiwi Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 03/11/11
Posts: 945
Loc: New Zealand
I just want to reiterate what all the absolutely lovely, compassionate, empathetic posters above have advised.
I am crying buckets with you and for you too - and for me.
To me, you are coping amazingly well. Thing is we don't have any choice, this escalator keeps going.
I am pleased your daughters now have a fuller appreciation of what you are dealing with 24 hours a day. My sons are 26, 24 and 20. They too are involved in our family journey. This is their dad. They have a right to know and only then can they make a decision on how they will react/ cope. Thing is I want to protect them and them me. Embrace your girls, I'm sure they will now be there for you both.
I hope you do get yourself a little dog, pets bring such unconditional love and
solace.
Lots of hugs and love to you,
Tammy
_________________________
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2016 4years post surgery .NED !

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#146588 - 03/01/12 01:59 AM Re: and, the results are back.. [Re: Anne-Marie]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
So, the day started on a rough note. He wasn't wanting to get up, so I had to put on my "mean nurse" hat and make him get going. Then we fought over meds because he wanted his morphine again too soon and I took the bottles away. He proceeds to put on a "then I'm not going" pout, so I tossed him the bottles and said, "whatever, take them all, what does it matter... just get in the **** car." He's using the walker and he lets me help him down our front steps and into the car.
20 min drive over to radiation clinic. He gets out of the car, takes two steps with the walker and fell back into my arms.
I lowered him to the ground easy enough, thank goodness I was there.
I had to lift him upright ease him back into the car and go inside the clinic for a wheelchair. Walking was no longer possible.
When we got home, I got his wheelchair to bring him inside, and at the steps, I had to pick him up and set him on each step.
I am SO going to be feeling this tomorrow.

Tomorrow morning, the CNA comes to help with his shower, then a social worker is coming by with power of attorney and advanced directives. I believe I will unload on him while he's here.
Maybe he will have suggestions.

I'm not sleeping worth a damn, even the meds I was given to help with it have stopped helping. Between the puppy cries at night and the cough Matt has had for the lasts couple of nights, I have been completely out of my head. I am almost ready to set up my spare bed in the family room so I can maybe get some sound rest.

Work benefits kick in tomorrow, so I'll get back to the doc soon, partly for my back which is long overdue for adjustments, and for my sleep.

I did get some 1 on 1 time with the radiation doc today and discussed the confusion and random thoughts and statements, he gets and MRI of the brain on Friday afternoon.
At least I will know if I am dealing with the narcotics or if it's met to the brain.
I told the doc, that I appreciated the action since the progression of his condition points to that area being a logical site for more cancer.
She asks, "are you a nurse" I said, No, I just read up on this A LOT!!!!

Going to try and finish the housework.
Daughter is coming over again tomorrow evening while I am working. Then I am off again on Friday.

Talk to you all soon. Thank you for all the hugs, prayers, and continued love and support. You all mean the world to me.


_________________________
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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#146600 - 03/01/12 08:23 AM Re: and, the results are back.. [Re: CMMoore]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Thanks for the update, Christine - I'm glad you have people checking in with you and helping with Matt's care. I'm awed at you emotional and physical strength and all that you've taken the initiative to learn about Matt's care. It's no wonder the radiation doc asked if you were a nurse! You have probably already earned an "Honorary degree" in nursing by now! You do need some sleep, though to be able to keep going. If a spare bed in the family room helps, by all means go for it! Let the housework go or just do the parts that show. About the puppy, it's been a long time since I had a puppy, and I don't know how young yours is, but what we did at night was put our puppy in a box just big enough for him to fit into with holes cut so he could see out and he was fine all night, especially after the cat came over and took a look at what was making the noise and walked away. Maybe a soft stuffed animal for him to cuddle with would help? Let us know what happens with your doc and the back adjustments. Hope you can get some replenishing sleep for yourself soon.
_________________________
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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#146611 - 03/01/12 03:26 PM Re: and, the results are back.. [Re: Anne-Marie]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 493
Loc: NW Ohio
Christine,
You are doing a marvelous job. What a wonderful caregiver you are. I am sure that somewhere deep in his soul he appreciates it. When I first had my surgery, our dog would come up to me and lay her head on my shoulder, like she knew where the problem was. It was very comforting. God bless you and stay as strong as you are able. I am glad that you have help during this rough time. Feel free to vent whenever you wish. We are all here for you.
_________________________
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.

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#146617 - 03/01/12 05:22 PM Re: and, the results are back.. [Re: zengalib]
Shelley K Offline
Platinum Member (300+ posts)

Registered: 08/30/05
Posts: 307
Loc: North Hills, CA
Christine,

Hang in there girl, you are doing an amazing job. When our dogs were puppies and they would cry at night, I use to put a ticking clock next to them and that helped. I was told it sounds like their Mother's heartbeat. And I have to admit, my latest dog, when she was a puppy and would start to cry, I let her sleep with me. I know I'm bad...:) Sending prayers for you and Matt. Thanks for keeping us updated.

Hugs,

Shelley
_________________________
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.

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#146625 - 03/01/12 06:52 PM Re: and, the results are back.. [Re: Shelley K]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
I did get a TON of things accomplished around the house yesterday. SO many laundry loads, then took our bed apart to remove the frame. I'd convinced him to spend some time in the family room recliner while I got the linens changed. While he napped, I went to work making the area a little safer for his falls that are bound to happen. My son and I managed to get his wheelchair up the mercifully few steps to the main level of the house, and as soon as he entered the room he started cussing the changes. Well, he was sure singing a different tune when I mentioned it's a lot closer to the floor for when he dives for it head first!
We seem to be combatant a lot still. It sucks, but I will remember the better times once we get through this.
The social worker came today and we filled out medical POA and advanced directives today. It took a very long time to. While he started out cohesive, he quickly went downhill and started taking apart the poor mans binder wanting to know what "secret" forms he was REALLY signing, and talked about some person in England that was listening to everything... Oh dear!
He is sleeping now. I read some of the booklets that the hospice company left in their folder regarding end stages etc. he is already showing signs expected in those with less than a month remaining.
On one hand it's all so fast. On the other, it's been a very long three years.
_________________________
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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#146627 - 03/01/12 07:18 PM Re: and, the results are back.. [Re: CMMoore]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Oh my goodness, Christine! - You are doing a super-awesome job of taking care of so many things! I hope you are able to get some sleep for yourself and take care of You. I'm glad you were able to re-arrange furniture to make things a little easier and lessen the chances of Matt's falling. Sending hugs your way and hope for some good, peaceful moments for you and Matt. (and the puppy, too!)
_________________________
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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#146690 - 03/02/12 10:14 PM Re: and, the results are back.. [Re: Anne-Marie]
Karenj Offline
Supporting Member (50+ posts)

Registered: 12/17/10
Posts: 99
Loc: Michigan
I understand what you are expressing in your last post. Know that there are many of us here who are with you in spirit and will be thinking of you and Matt each day, hoping for peace as much as possible. Take care. Karen
_________________________
CG 2 Emmett,7/09 DX SCC rt tongue. T2N1M0, 1 node, marg neg.4/10 PET/CT clear, 9/10 C back. 10/10 Rad hemi, 2 tmrs mod diff. resec flr of mth. Flap 4 nodes/w/ext cap. 11/10 Peg, CX3 HD, 30 rad. 1/31 & 3/21 6/11/11 - PET/CT "activity" 9/11-all Clear. 12/11 peg out. 2/15 still all clear! 9/14 Prostate cancer treated with pencil beam proton therapy, best radiation experience. Keep it in mind as a treatment option for all tumors that can be seen including head and neck.

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#146759 - 03/04/12 06:05 PM Re: and, the results are back.. [Re: Karenj]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Good day everyone!
Everything is much the same here. He sleeps most of the time.
My job has been quite busy most of the time and doesn't give me time to think about things. I am glad I took the position!
My puppy sleeps at my feet during the later part of my shift. She's turning out to be a great choice as well, getting my teenager to help out more is my next big challenge!
Hope everyone has a wonderful day.

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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#146760 - 03/04/12 08:59 PM Re: and, the results are back.. [Re: CMMoore]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
So glad to see this post. Breathe while you can!! Puppies can be wonderful comforters.
Good luck with the teen thing....battling that here too.
Thinking of you,
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#146776 - 03/05/12 08:27 AM Re: and, the results are back.. [Re: KP5]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
what a rollercoaster this can all be...
tonight i am kept awake wondering how long i can put off either checking him into a facility for care, or hiring someone to sit with him when I cannot.
how do i possibly make that decision????

here's why i am considering it... three times today, I picked him up out of the floor where he had ended up after trying to use the urinal. last time, just a few moments ago, i got him back into bed, and he almost immediately rolled right back in the floor.
I am SO tired. So scared. I feel like if I wave the white flag of surrender that I will have failed miserably.
What is a wife to do? (rhetorical.... )
_________________________
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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#146777 - 03/05/12 10:42 AM Re: and, the results are back.. [Re: CMMoore]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Christine - Please, please don't EVER feel like you have failed! Asking for help is not a sign of weakness. You have already shown so much strength - physical, emotional as well as in every other area of your care and love for Matt! If you do wave that white flag, it should be for YOU - to get whatever assistance will help you to survive. Whether you check Matt into a facility or get someone to sit with him while you cannot, it will make it possible for you to replenish yourself and keep your strength up so that you can be available for any peaceful moments that come by for you and Matt. . . . moments to just sit by him, touch his hand, or whisper "I love you". Even if he does not acknowledge or hear you, he will know it somewhere deep inside. Caregivers need care, too.
_________________________
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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#146800 - 03/05/12 03:26 PM Re: and, the results are back.. [Re: Anne-Marie]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
I agree with Anne-Marie. The last thing you are is a failure lady. You are a warrior and perhaps the battle is coming to an end. I haven't been through it and pray I won't, but I'm thinking it is down to the final decisions and that might include a facility where they can keep him safe. You can still go there and be with him when you aren't working, and maybe you can get the work done faster and be with him on a more quality basis if you aren't always having to play catch up. He will be clean, hydrated and protected and maybe able to communicate more clearly. He will fight you on it, but you have to do what you know is right for both of you, but especially for him. It sounds like he is beyond making rational decisions...that's why you got the directives. Have him go by Ambulance if he's really angry about it. Call them after a fall.
Praying for you sister. So sorry. Please know we are all here.
Love ya',
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#146807 - 03/05/12 04:14 PM Re: and, the results are back.. [Re: KP5]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 941
Loc: Ohio
Christine,
my sister in law had to make a similar decision with her dad, who has dementia and assorted physical issued, including falling. She felt like a failure at first, but is now coming to see that there is a limit to how much one person can do - and she went over that limit a while ago. I don't think you would call her a failure; I don't think you should call yourself a failure, either. Like my SIL, you are a wonderfully brave and caring person; but you are human, and we humans sometimes need some help. Best wishes for you both whatever your decision.
Maria
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#146810 - 03/05/12 04:25 PM Re: and, the results are back.. [Re: Maria]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9063
Loc: PA
Christine being a caregiver is the hardest job their is. Having to wear so many hats all at the same time always with a smile on your face in front of the patient is no small feat. Its a hundred times more difficult when your patient is not co-operating all the time. Never EVER consider yourself anything less than an amazing, competent, loving caregiver with the patience of a saint. Im sure your task is much more than I would be able to handle. To me being the patient is the easy part. Caregivers are angels!!!

If you need help caring for Matt it certainly understandable. If the time has come for professionals to take over then know in your heart that you did every single thing possible to help him. Never look back and have any regrets. You have done an excellent job in a very difficult situation. Making this decision is not easy at all.

Please remember every single day to take some time for just you. Be good to yourself.

Always keeping you and Matt in my prayers.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#146838 - 03/06/12 03:02 AM Re: and, the results are back.. [Re: ChristineB]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
I had a great visit with Matt's daughter tonight. She's really in denial though and isn't able to really embrace her Dad's condition and say all that needs said. I wish I knew how to help her.
The hospice mentioned pre-bereavement counseling, and I'll check to see if they can visit on the weekend.
She asks me how she can help, what she can "do". I don't know what to say. I feel uncomfortable asking for help with housekeeping, but I sure could use it. I guess I will have to get over my own feelings and thank God for the help he is sending us.
_________________________
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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#146848 - 03/06/12 11:43 AM Re: and, the results are back.. [Re: CMMoore]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
_________________________
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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#146853 - 03/06/12 02:27 PM Re: and, the results are back.. [Re: Anne-Marie]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
You know I will! (keep y'all updated) This outlet is a Godsend to me. Excellent idea with the "to do" list. I will definitely make one and allow her to make the choices of how to help that way.

Thanks!
_________________________
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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#146877 - 03/07/12 03:59 AM Re: and, the results are back.. [Re: CMMoore]
walknlite Offline
Patient Advocate (1000+ posts)

Registered: 05/13/09
Posts: 1405
Loc: Oklahoma
Christine, I want you to know that I have been following your posts and have been praying for you. You are a strong woman and a great caregiver. I will continue to keep you and your family in my prayers.
_________________________
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12

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#146882 - 03/07/12 07:23 AM Re: and, the results are back.. [Re: walknlite]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Thank you for those prayers. I know sometimes that they are all that keeps us going.
I spoke to the hospice counselor today and put her in touch with matt's daughter. I offered to go with her, but suggested one on one session to figure out what she needs to say before getting Matt together with them.

I had a involuntary few days off work. I have an external ear inflammation in both ears that has made working (taking phone calls) impossible. I worked through it on Sunday, but then called in Monday for a doc visit. Started antibiotic drops, then yesterday every little movement of my head hurt. So, home again. Today is my regularly scheduled day off. We'll be out running errands and getting him to what I think is the final radiation appointment. Still waiting for results on the brain MRI too.
Will let y'all know what I find out.

I went outside with Daisy(puppy) a little while ago, and the moon is so bright and the temp was just right, I just sat on the front porch absorbing the serenity.

Learning each day to take what moments I can and enjoy them to the fullest.

Love, Hope, and Prayers to all of you,
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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#146884 - 03/07/12 10:40 AM Re: and, the results are back.. [Re: CMMoore]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Thanks for update, Christine. You have been doing so much. I hope you take a few of those moments to conserve your own energy and take care of your health. Hope everything goes well today with Matt's Rad appointment.
_________________________
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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#146895 - 03/07/12 04:10 PM Re: and, the results are back.. [Re: Anne-Marie]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 941
Loc: Ohio
Hi, Christine
I am glad to hear that you and Daisy were able to enjoy the moon. Will be thinking about you and your family.
Maria
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#146902 - 03/07/12 08:36 PM Re: and, the results are back.. [Re: Maria]
Karenj Offline
Supporting Member (50+ posts)

Registered: 12/17/10
Posts: 99
Loc: Michigan
I think of you and your family every day. Hope you feel a blanket of love from this OC family when the day feels overwhelming and upsetting. Your posts and the responses sent back to you by the caring people here have given me strength and insight for the future as they have addressed things I have been struggling with also. Thank you for honestly sharing your journey. Karen
_________________________
CG 2 Emmett,7/09 DX SCC rt tongue. T2N1M0, 1 node, marg neg.4/10 PET/CT clear, 9/10 C back. 10/10 Rad hemi, 2 tmrs mod diff. resec flr of mth. Flap 4 nodes/w/ext cap. 11/10 Peg, CX3 HD, 30 rad. 1/31 & 3/21 6/11/11 - PET/CT "activity" 9/11-all Clear. 12/11 peg out. 2/15 still all clear! 9/14 Prostate cancer treated with pencil beam proton therapy, best radiation experience. Keep it in mind as a treatment option for all tumors that can be seen including head and neck.

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#146918 - 03/08/12 12:49 AM Re: and, the results are back.. [Re: Karenj]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
So, the MRI results... NO mets to the brain! Thank you God!
However, we are back to wondering why oh why is he SO confused...
I am going to guess that it's a nutritional imbalance.
He's not taking much in the way of pain meds anymore so I can't believe it could be narcotics.
Someone at the clinic suggested perhaps an electrolyte imbalance?
I will discuss this with the hospice nurse tomorrow.

Too tired for much more than that tonight. Goodnight all.
_________________________
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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#146924 - 03/08/12 02:18 AM Re: and, the results are back.. [Re: CMMoore]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
Praying Christine. Hope your ears feel better soon.
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#146948 - 03/08/12 05:55 PM Re: and, the results are back.. [Re: KP5]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Thanks Kathy. They still hurt. The right ear seems to be getting better, but the left ear is almost swollen closed. I could definitely use prayers for swift healing!

_________________________
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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#146955 - 03/08/12 11:11 PM Re: and, the results are back.. [Re: CMMoore]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 941
Loc: Ohio
Christine - I'm sure they've checked his blood sugar level but just thought I'd ask - maybe a diabeties issue? That can also cause confusion (sure did with my mom.
Healing thoughts for your poor ears.
Maria
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#146961 - 03/09/12 02:12 AM Re: and, the results are back.. [Re: Maria]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
Awesome on the MRI results. Hopefully now they will try to figure out the confusion. What does his doc say about it?
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#146993 - 03/09/12 09:26 PM Re: and, the results are back.. [Re: KP5]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
Hey Christine just read all the posts since the 21st of Feb, I've been gone that long? I've been so busy at work and I have 2 kids moving to new apt and new home since end of Feb and 1st of this month so I've been crazy! YOU ARE DOING AWESOME!! Don't ever doubt yourself, hell I'm so tired from working all day and Ron is doing fine so I don't have to take care of him so much even though he still eats like a bird and is still very thin. But I am going to try and keep up with you. Last I read on FB from you, you were thinking bout getting the Mini Pin I don't know if I missed your postings or what cuz I'm hardly on there too, work has burnt me out of computers by the time I get home I don't want to sit on one again!
You need to send me a pic of the lil girl.
Hope all is well and thank God it's not to the brain.
_________________________
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

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#147003 - 03/10/12 05:34 AM Re: and, the results are back.. [Re: SUEZ]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
I am having a SERIOUSLY down night. I had a great day. I got out of the house, made a new friend, went to the mall, bought my step-daughter a b-day present, signed up with a gym, enjoyed my day.
I came home to the usual situation, linens soiled, husband confused, waiting on hospice aide to come give him a shower.
I put him in his chair so I could start changing the bed and the aide came in, helped me (shocker... she was the first one to offer to help ME)... then she took a verbal beating while trying to figure out if Matt did or did not want a darn shower. He ended up getting a quick wash over while sitting up as he was not cooperating.
The aide left me with some absorbant pads to put under him. OF course the first time he needs to urinate, he pulls the pad out from under him, and THEN goes on the bed and floor.
I just throw up my hands for the night. I don't have anymore clean sheets for the darn bed. I cannot get him to use the depends nor the pads they provided. He wont use his oxygen, he argues taking meds...

And for the last hour or so, I have been sobbing non stop over how much i MISS MY HUSBAND. This lovely day I had, and I didn't have anyone to talk it over with. I want to play cards again at bedtime. I want to argue over what movie we are going to watch.
I AM SO LONELY.
_________________________
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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#147005 - 03/10/12 06:18 AM Re: and, the results are back.. [Re: CMMoore]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Oh my dear Christine! I'm so sorry for the rough night you are having. I know you must miss the man your husband was before everything changed so drastically. It's such a rough road you are on. I wish I could be there with some hugs for you and a shoulder to cry on. I'm glad the day earlier on was good though, and that you got to do something for you to enjoy your day. I wish I had some practical ideas for you but I haven't been where you are. I wonder what the people in a care facility would do with a patient that refuses to cooperate - would they maybe duck tape the pads to the bed or chair? Or maybe get the "nurse from Hell" to come over and negotiate with him? I'm sure Matt is feeling really badly to be reacting this way and my heart goes out to both of you. I'm having one of my "can't sleep" nights so if you are still around and see this and want to "talk" just PM me, ok? I'll be around for a while.
_________________________
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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#147034 - 03/11/12 04:36 AM Re: and, the results are back.. [Re: Anne-Marie]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Daughters visited today, he was awake through the several hour visit. It was good for all. I had to work, but I am glad that they got the time together.
Matt doesn't know where we live anymore, he's confused as to why we are in this city. He seems to think we live in an apartment somewhere else.
The rattle from his lungs has been terrible for about a week now.
I fear the worst, pray for the best, and wish it was over.
_________________________
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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#147039 - 03/11/12 05:44 AM Re: and, the results are back.. [Re: CMMoore]
julieann Offline
"Above & Beyond" Member (500+ posts)

Registered: 06/24/09
Posts: 875
Loc: Alabama
Christine:
My prayers are with you and Matt, and your family. Words cannot express the sadness I feel just reading your posts. Enjoy your time together.
Lovingly,
julieann
_________________________
Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile

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#147047 - 03/11/12 05:15 PM Re: and, the results are back.. [Re: julieann]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 941
Loc: Ohio
Christine,
glad the daughters had a good visit. Matt may living back in easier times since the here and now is so difficult to bear. Thoughts are with you both.
Maria
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#147052 - 03/12/12 06:23 AM Re: and, the results are back.. [Re: Maria]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Today I am so grateful for my step daughter. She came while I worked and did ALL of my laundry. Took care of her Dad, sat with him almost all day, and we had a brainstorming session regarding his needs and additional care.
She sent me a text after she left stating that she imagined I felt quite alone in all of this, and she wanted to make sure I wasn't.
She's great. Just like her Daddy.
_________________________
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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#147055 - 03/12/12 10:03 AM Re: and, the results are back.. [Re: CMMoore]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Christine - Your step daughter sounds like an absolute angel here on earth! I am so happy that she was able to be with her Dad and spend precious moments with him, and to show you so beautifully that you really are not alone in this!! Sweet moments like the ones you had with your step-daughter are the ones that help to soften and get past the difficult ones. I'm so glad that you and Matt have such a special person in your lives.
_________________________
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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#147060 - 03/12/12 03:18 PM Re: and, the results are back.. [Re: Anne-Marie]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
Hi Christine. I don't know how, but somehow I missed the post of your bad night. I'm so, so sorry for those rough times. I can't even imagine. What a blessing your stepdaughter is. YAY for her. It's refreshing to see a young woman step up!!
I don't understand the confusion if there was no mets to the brain? What is the doc saying about that?
Glad your terrible night was followed by some good days and company.
Praying for peace for you.
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#147062 - 03/12/12 05:16 PM Re: and, the results are back.. [Re: KP5]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
We haven't seen the doc, the hospice nurse is our "go between" and she is dismissive of it. Glad I read this post just now. She's on her way for today's visit. I will ask her for more info, because pain is managed, it's not the narcotics, nor the suspected brain issues... SO.. natural progression of the dying process?
I have read that confusion, etc. is common, but he still seems like he isn't that close to going...
It's frustrating and confusing, and gut wrenching... will update y'all this afternoon.
_________________________
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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#147063 - 03/12/12 07:21 PM Re: and, the results are back.. [Re: Caco]
penners Offline
Senior Member (100+ posts)

Registered: 05/27/10
Posts: 135
Loc: North Carolina
Christine you are in my thoughts. Ask the RN to run a serum ammonia level on Matt, that could be causing the confusion.

Bless you

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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#147065 - 03/12/12 09:52 PM Re: and, the results are back.. [Re: penners]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Today, added to his symptoms is PARANOIA. He still doesn't know where we are, even though he grew up in this house. He knows ME. knows I am his WIFE, but thinks I am hiding him, and am out to hurt him somehow.
The nurse added a liquid anti-anxiety med and told me when he becomes belligerent towards me to give him that every two hours.
No cures to anything will be sought but this company... as is the nature of hospice... just managing the symptoms by giving him sedatives.
(on a side note... while struggling to get the proper 0.25 ml dosage in the syringe, I dropped some on my hand, which I automatically LICKED off. OH NO!!! I am chill as a cucumber right now, folks, but lesson learned!!! WIPE IT OFF!)

He will no longer allow me to serve him anything unsealed or colored. Water only, as I am not to be trusted.
I am doing my best to laugh it off.


_________________________
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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#147066 - 03/12/12 10:31 PM Re: and, the results are back.. [Re: CMMoore]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 941
Loc: Ohio
Oh, man, Christine, not a good symptom to add. Hope the meds help with it.
Maria
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#147074 - 03/13/12 12:48 AM Re: and, the results are back.. [Re: Maria]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
Oh no....You HAVE to try to see a doc. Are they available to you?
It really sounds like hospice is not much help! That stinks!
There has GOT to be something going on. Oh my goodness!!
Oh....and what is the name of the chill drug!!! ;o) JK
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#147075 - 03/13/12 04:23 AM Re: and, the results are back.. [Re: KP5]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
As much as I was against the use of lorazepam, I did try this evening. He calmed, took a nap, and woke still a little off, but was caring and affectionate towards the kids and I.
I'll take it! He sat up next to me and hugged me and held my hands. It was the best feeling in the world.
_________________________
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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#147076 - 03/13/12 06:04 AM Re: and, the results are back.. [Re: CMMoore]
Sandy177 Offline
"Above & Beyond" Member (500+ posts)

Registered: 01/17/11
Posts: 571
Loc: California
I'm glad that you had some good quality time together. At this point, use whatever is available to help all of you get through with as little physical and/or emotional pain as possible.

Keeping you, Matt and your family in my prayers.

Sandy
xoxoxo
_________________________
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.

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#147083 - 03/13/12 10:38 AM Re: and, the results are back.. [Re: Sandy177]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Whatever works, Christine - it's worth trying. The hugs and touching say so much more than words, and I'm so glad you and Matt and the kids had these special moments.
_________________________
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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#147095 - 03/14/12 02:08 AM Re: and, the results are back.. [Re: CMMoore]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
Awesome. Use it and relax for a bit!!!
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#147144 - 03/15/12 08:43 AM Re: and, the results are back.. [Re: KP5]
tamvonk Offline
"OCF Kiwi Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 03/11/11
Posts: 945
Loc: New Zealand
Oh Christine,
How my heart aches with you.
Use that Lorazepam.
How wonderful that you are getting some quality time with your husband. Imprint these times on your memory.
Love and hugs,
Tammy
_________________________
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2016 4years post surgery .NED !

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#147148 - 03/15/12 03:06 PM Re: and, the results are back.. [Re: tamvonk]
wallyswife Offline
Senior Member (100+ posts)

Registered: 10/09/07
Posts: 104
Loc: London, Ont.
Christine I am so sorry for the struggles you are having with this stage of Matt's illness. My husband also became very confused in his last 2-3 weeks of life, but thankfully not paranoid. Paranoia is very difficult to deal with and quite common in the terminally ill. I worked in palliative care for 20 years as a nurse and saw it often. There is some theory that all this is caused by psychosis due to the stress of dealing with the illness and impending death. Antipsycotic medications are sometimes helpful though sedating in the amounts needed to control the symptoms. Unfortunately it becomes a trade off of having the patient awake, agitated and confused or sedated, neither are very appealing to loved ones.
As for the incontinence I had a waterproof mattress cover and bought extra sheets to have enough to keep changing them. The rattling respirations, if he is on tube feeding I would cut it back to about half, just enough to keep him hydrated and the bowels moving. Sorry hospice is not more help to you, they could do better. Hopefully the Ativan (lorazepam) will continue to help. Hang in there, it is a tough road you are travelling.
_________________________
Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.

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#147184 - 03/16/12 07:30 AM Re: and, the results are back.. [Re: wallyswife]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
we got him in a hospital bed now, the mattress cover is vinyl and they have provided absorbant pads to place under him. To me the paranoia is the worst. I have to give him his meds, and when he decides that I am no good, it's a LONG battle to get him to take anything I am offering, and keeping him focused long enough to gain trust has been a big challenge.

I had our bed hauled off today. It was soaked, and the box springs were ruined... I hate to think what I gave for that bed barely a year ago, but there was no way I would sleep peacefully on it again. Just another casualty of this damn disease.

For those of you not on my facebook friends, I'd like to share a couple of stories that happened this week.
First, my mom is planning to visit me tomorrow. As she was telling the people she works with the situation, a man I've never met asked her to give me a big hug... from my husband.
She tells me this over the phone, and I started sobbing so hard I couldn't talk. Totally freaked out my teenager. I convinced him I was okay, but remained quite weepy the rest of the night.

Then, today one of the gentlemen who hauled off the mattress, just looks at me and says "mercury is in retrograde, communication will be difficult and this is a hard time for crossing over. Don't take it personally." I literally had spoken two sentences to this man. It was bizarre, yet comforting as Matt has been unable to communicate for a while now.

No PEG anymore... what little fluids he takes in aspirate and cause major coughing. He tries to drink Ensure and that is the only nutrition at this time. He has no interest in it much of the time, and has to be reminded to drink.

It's coming. I hope for his sake it will come soon and peacefully.

Although, my son is going to spend spring break with relatives and will be gone a week. I would hate for it to happen while he is away.

I shall remind him to spend time tomorrow and say anything that needs saying before he leaves. I hope that he has peace.

Goodnight all, I have been having a terrible time sleeping in a bed alone, but my eyelids are finally droopy, and I'm going for it.

Love to all.

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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#147185 - 03/16/12 09:28 AM Re: and, the results are back.. [Re: CMMoore]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Thank you for sharing your heartfelt stories, Christine. Amazing how such words of comfort can come from completely unexpected sources. Makes me believe in angels who are pressed into service at times when they are needed the most. I'm glad your Mother will be with you. Please ask her to give you a hug from all of us here.
_________________________
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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#147190 - 03/16/12 03:40 PM Re: and, the results are back.. [Re: Anne-Marie]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Thanks Anne-Marie. I love you all so much for your encouragement through this journey.
When the shower aide came by today she noticed a change in him immediately and stated that she believes he is in the active stages of dying.
The nurse came by and confirmed. Could be anytime from now to a few days, but likely not the week left to go.
I am prepared as I can be, other than the crematory arrangements which i will take care of today.
I will update you as I can, you all understand the emotional roller coaster that is coming, and I know will forgive me if I am out of touch for a little bit.
_________________________
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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#147193 - 03/16/12 04:07 PM Re: and, the results are back.. [Re: Anne-Marie]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
I agree. Ministering Angels are placed perfectly in His Perfectness!! Blessings Christine. We love you!!
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#147194 - 03/16/12 04:49 PM Re: and, the results are back.. [Re: KP5]
Shelley K Offline
Platinum Member (300+ posts)

Registered: 08/30/05
Posts: 307
Loc: North Hills, CA
We love you Christine....sending tons of prayers for you and Matt.

Hugs,

Shelley
_________________________
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.

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#147197 - 03/16/12 05:08 PM Re: and, the results are back.. [Re: Shelley K]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 941
Loc: Ohio
Glad that your mom will be with you. Peace be with you and your family.
Maria
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#147209 - 03/16/12 06:46 PM Re: and, the results are back.. [Re: Maria]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
My heart is breaking for you and your husband and family Christine...I don't know if I could do it. I think I am strong but I don't think I could handle what you are going thru. I hate to say it but I think IF it ever happens with Ron I'm sorry but he would have to go into a nursing home only because nobody is home at all with him all day except the dogs and his mom his elderly herself and his sister works full time as well as I do. I think Ron already knows this but as depressing as it sounds we need to talk about it if he doesn't know.
God Bless you Christine, as bad as this sounds, soon it will be all over for you and Matt and you all can rest peacefully once again.
OOOOOOOXXXXXX!
_________________________
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

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#147213 - 03/16/12 07:32 PM Re: and, the results are back.. [Re: SUEZ]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9063
Loc: PA
Christine, we are right there with you. Im so sorry that you are going thru this horror with your husband! I cant begin to know how difficult your days are. Take things day by day, hour by hour and do the best you can. (((HUGS)))
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#147225 - 03/17/12 04:07 AM Re: and, the results are back.. [Re: ChristineB]
penners Offline
Senior Member (100+ posts)

Registered: 05/27/10
Posts: 135
Loc: North Carolina
Christine, my heart is hurting for you and Matt. I hope the transition is peaceful and quick. Please know you are loved by many who will support you however we can. Words seem so inadequate. Just know that much love is being sent your way.

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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#147226 - 03/17/12 04:23 AM Re: and, the results are back.. [Re: ChristineB]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Oh my goodness... I hate this! My parents were here for about three hours, they took my son with them for spring break. I made sure he knew the possibility of Matt passing before he made it back and that he had the chance to say anything on his heart.
My step daughters came around 5 and stayed until after 10. Matt spent most of that time unresponsive, though for a moment he opened his eyes and said Hi to me. That one little word holds my heart in its grasp. I hang desperately onto each utterance, longing for just 5 more minutes to reminisce, to say silly I love yous and call each other honey bunny and baby doll, just one more smile on that face that I adore meant for me.
Oh wow... I am so not liking being alone right now. I sit next to his bed and try and massage his legs and arms. I am going to end up snuggled right in that hospital bed with him before the morning. There just is no preparing for this reality and how much it hurts and scares me.
_________________________
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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#147227 - 03/17/12 04:24 AM Re: and, the results are back.. [Re: penners]
kenswife Offline
Senior Member (100+ posts)

Registered: 01/05/11
Posts: 123
Loc: Massachusetts
I am so sorry to read this. I wish you all strength and peace during these hard times.
_________________________
Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended

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#147228 - 03/17/12 04:58 AM Re: and, the results are back.. [Re: CMMoore]
julieann Offline
"Above & Beyond" Member (500+ posts)

Registered: 06/24/09
Posts: 875
Loc: Alabama
Christine:
Know that I am thinking and praying for you and Matt not to suffer, and that you both will soon have peace. May God bless you both.
Love and hugs from julieann
_________________________
Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile

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#147230 - 03/17/12 07:31 AM Re: and, the results are back.. [Re: julieann]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
So, I didn't get as much talking out of him as I wanted... However, he did sit upright, took some drink, and ate 1/2 a yogurt. I have the radio playing his favorite music and I've been sitting in the bed next to him snuggled up rubbing his head and shoulders, singing and talking. It was priceless. I am much more at ease than the prior message. I do tend to share all the highs and lows with you all, no reason to stop now =)
Light rain is falling outside, windows are open, sleep just may come to me... Goodnight./ morning to all of you.
_________________________
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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#147234 - 03/17/12 09:36 AM Re: and, the results are back.. [Re: CMMoore]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Christine - Words just can't say how my heart is breaking for you right now. . . I hope that these few moments of peace and closeness will continue to comfort you and Matt and make the sadness a little easier to bear.
_________________________
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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#147236 - 03/17/12 01:20 PM Re: and, the results are back.. [Re: Anne-Marie]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 493
Loc: NW Ohio
God bless you, Chistine, as you continue your journey with your husband. You are an amazing woman. Be strong.
_________________________
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.

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#147238 - 03/17/12 01:36 PM Re: and, the results are back.. [Re: CMMoore]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
I wish some of us lived closer to you Christine. We would make sure you were not alone. We love you and are crying and aching for you. I hope somehow you feel our love. I'm so sorry.
Peace and love,
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#147251 - 03/17/12 08:38 PM Re: and, the results are back.. [Re: KP5]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Kathy I DO. I promise you that. That's what has kept me coming back here since 2009. I love you all, too.

My step daughters have been with me since about 1030 today. In lieu of anything else, they are just cleaning house. Spring cleaning, check! DONE. I still have to go through the garage, but the inside of the house (other than the teenagers room OMG!) will be finished. All they lack is mopping the floors and they are currently off to the store to get supplies and lunch.

Matt is doing well today. He is comfortable, awake, but distant. In that space of working things out on the inside.
I feel that he is definitely waiting for his sister to get here tomorrow. Anything beyond that only God knows. I feel like he has made such an improvement over the assessment of the hospice team on Friday (...was that really just yesterday????) morning.

I do have peace. I know that he loves me. I know that he can feel my love both in words and by how much I take care of him.
We saw a movie several weeks back, no clue what the movie title is or the exact quote, but a couple remarked that they would always KNOW the others love within even when they were separated by death. He looked immediately at me and said, I hope we have that, too. I believe we do.

I am somewhat .. well P'd off over a comment his older sister made regarding final arrangements. I don't have a plot yet. He knows this, our plan has been that I will find a totally awesome cemetery, one that people, like us, enjoy visiting just to check out the cool old stones there.... then I will buy a cremains bench so that people will have a nice place to sit and rest among their exploration... that's settled.
Sister in law states, I am SO young, I'll definitely remarry, I might as well use the 1/2 of his mothers plot that is empty since she was cremated, too.
Perhaps she meant is as one less thing I would have to worry about, but to me at the time it was a slap across the face.
To me, any man that is lucky enough to marry me in the future will know that if it weren't for this damn cancer, I would still be Matt's. They will accept my final placement, or pi** off.

The girls try to get me to rest, but I cannot. I feel like I don't want to miss being there with him right to the end. I am on a vigil with no end in sight just yet...

Then again... my eyelids are VERY tired just after taking time to get some of this out... Venting always helps.

Til' next time,
Mrs. Matthew Dale Moore
_________________________
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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#147257 - 03/18/12 01:00 AM Re: and, the results are back.. [Re: CMMoore]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
You go Mrs. Moore. You are AMAZING!!
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#147270 - 03/18/12 03:28 PM Re: and, the results are back.. [Re: KP5]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 941
Loc: Ohio
What a wonderful man your Matt is, Mrs. Moore. Blessings on you both.
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#147293 - 03/19/12 02:18 AM Re: and, the results are back.. [Re: Maria]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Oh, such a struggle it must be to leave the known for that unknown journey. I imagine the struggle he must be having within.
The hardest part of this current time is seeing him dip to such lows and then recover to a reasonably familiar state. I almost cannot believe that Friday morning ever happened.
It's really weird how my concept of time is completely gone right now. Friday could have been a week ago and two weeks ago seems like yesterday.

I slept today and had terrible nightmares. The death happened over and over in various places and I would miss it, then I'd see him again and be SO happy, and then it would happen again.
I woke up very shaken and unsteady just in time to hear my phone ring... It was my Grandma and Papa. I don't talk to them nearly as often as I'd like to and haven't seen them since Christmas 2010, but my Grandma did comfort me much and tell me how sometimes you have to assure a person that those they love are going to be alright and that they can go. (Yeah... tried it and got told to GO AWAY)
Grandma then mentioned my son and I coming to stay with her in Albuquerque. I would of course love to. She has been through colon cancer and has lived with a colostomy for several years. She now has congestive heart failure and is not well enough to travel. My grandfather is in fair health as far as I know, but I am sure taking care of her has worn him down.
Perpetual care-giving was sure not my idea of the plan God has for me, but then again, it's not MY plan. It's HIS.

All of our suffering, our pain, our challenges, they prepare us for Gods plan. Never doubt that. Even if you aren't an avid believer, He is working in your life, He loves you, and He will lead you to your calling.

I will update you all as the journey continues.

Goodnight,
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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#147294 - 03/19/12 02:59 AM Re: and, the results are back.. [Re: CMMoore]
johnswife Offline
Supporting Member (50+ posts)

Registered: 06/16/10
Posts: 58
Loc: Michigan
Dear Christine,
I am SO sorry. I have been away from the OCF boards for awhile and was horrified to read your news about Matt. Your love is so strong and apparent, and he knows you are there with him, even during the not so lucid times. Matt sounds like a strong guy - much like my John. You have done an exemplary job of caregiving - the hardest thing I now realize anyone can do.
Peace and love to you both.
Hugs,

_________________________
Bonnie

CG to husb John, 57, love of my life for 35 yrs.
Dx 2/10, T2N2cMx, SCC BOT & lymph nodes.
Non smoker. Biopsy HPV+.
No surgery - IMRT 35X + 7 chemos cleared BOT
9/10-mets to lungs.
2 rounds chemo, last one trial drug which did not work.

Lost the battle, but walking in Glory 9/7/11.

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#147306 - 03/19/12 01:47 PM Re: and, the results are back.. [Re: johnswife]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
Your are doing wonderfully Christine, and I'm sure you can't sleep and no doubt having those crazy dreams/nighmares, because your mind knows this really is a nightmare for you. Death of a loved one is worst than a nightmare I believe. It tears your insides apart and just breaks your heart and in your mind you know they won't be in any more pain but you also do not want them to leave. I can't imagine but I am hoping in reading what folks have gone thru that when and if the time comes I will know what to expect and will most definately have the best team of supporters right here with you all.
God Bless
_________________________
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

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#147307 - 03/19/12 01:58 PM Re: and, the results are back.. [Re: johnswife]
slim Offline
Platinum Member (300+ posts)

Registered: 01/23/09
Posts: 475
Loc: PA
Good Morning Christine. My heart aches for you and I cry as I read your updates. You are walking a path that no one can understand unless they have been there. Just know that we do appreciate you sharing your journey with us and we are always thinking and praying for both you and Matt. It is an honor to be with someone at the end of their life but it is a difficult journey. Praying for you and Matt for peace and no more pain. Hugs

_________________________
Wanda (47) caregiver to husband John (56) age at diag.
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-13 - HBO (30 dives) tooth extraction

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#147308 - 03/19/12 03:44 PM Re: and, the results are back.. [Re: slim]
Shelley K Offline
Platinum Member (300+ posts)

Registered: 08/30/05
Posts: 307
Loc: North Hills, CA
Christine,

My heart is breaking for you...you are experiencing what each of us caregivers pray we will never have to go through. Just know we all love you and Matt and I too am praying for peace for the two of you. You are one amazing woman.

Tons of Hugs,

Shelley
_________________________
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.

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#147314 - 03/19/12 07:40 PM Re: and, the results are back.. [Re: Shelley K]
Gary Offline
Administrator, Resident radiation science expert
Patient Advocate (old timer, 2000 posts)

Registered: 11/27/02
Posts: 3550
Loc: San Francisco CA
Christine, I am very sorry you are going through this. I have worn those shoes myself, both as a patient and a caregiver for my terminally ill father. Neither was easy but there is no doubt that caregiving is the toughest of all. Between my pain and high levels of narcotics I was quite irrational and delusional at times. Don't let that beat you down, it comes with the territory. Many doctors are reluctant to write hospice orders. In my dad's case he was in Hospice 2 weeks before he died and could have been on it for 6 months. Get on the doctors case to write the order, if he hasn't already. Matt will ultimately be more comfortable, have better quality time and you will get some much needed help and maybe even some respite care. Try to get power of attorney on the bank accounts or they will be tied up in probate (unless they are joint). A living trust (if you own property) is the way to go because a will be end up in probate as well. When my wifes mom died 2 years ago, it took a year before probate closed and she was able to access funds.

Elizabeth Kubler Ross has some great books on dying, death and the subsequent grieving process which helped my a lot when my father was dying. "death, The Final Stage Of Growth" was one. In fact, your grieving process has already started, if for no other reason, you are mourning the relationship you once had.

My father refused any pain pain meds stronger than Tylenol, even though he had Dilaudid and several other high strength pain killers. He wanted to stay in the "now" and was quite lucid until the very end. Of course, this is not always practical with many forms of cancer pain so always remember that the narcotics assimilate into the brain chemistry and try not to take the insults, irrationality and delusional behavior personally. You have to throw out some of the old maps. One day at a time...
_________________________
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)

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#147321 - 03/19/12 10:15 PM Re: and, the results are back.. [Re: Gary]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Matthew went peacefully surrounded by his family this afternoon.
Touch base when I can.
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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#147323 - 03/19/12 10:37 PM Re: and, the results are back.. [Re: CMMoore]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
I'm so, so sorry, Christine.
_________________________
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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#147325 - 03/19/12 10:50 PM Re: and, the results are back.. [Re: Anne-Marie]
Gabe Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Registered: 08/02/07
Posts: 1301
Loc: Sydney NSW Australia
My sympathies go to you and your family on Matthews passing Christine.
He is now at peace and with the angels.
Love and a big hug!
Gabriele
_________________________
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family


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#147327 - 03/19/12 11:05 PM Re: and, the results are back.. [Re: Gabe]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9063
Loc: PA
Christine I am very sorry for your loss! May Matt now rest in peace, free from all the pain and suffering. (((HUGS)))
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#147329 - 03/19/12 11:06 PM Re: and, the results are back.. [Re: Gabe]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 941
Loc: Ohio
I am so glad you were all able to be together at the end, and that it was peaceful. My prayers for your continued strength and courage in the difficult days ahead.
Maria
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#147330 - 03/19/12 11:59 PM Re: and, the results are back.. [Re: Maria]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 493
Loc: NW Ohio
Prayers headed to you and your family. You were a wonderful caregiver. God bless you.
_________________________
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.

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#147332 - 03/20/12 12:23 AM Re: and, the results are back.. [Re: zengalib]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Love and peace to you my friend.
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#147338 - 03/20/12 12:56 AM Re: and, the results are back.. [Re: EricS]
julieann Offline
"Above & Beyond" Member (500+ posts)

Registered: 06/24/09
Posts: 875
Loc: Alabama
Just saw your post Christine, and I am so terribly sorry. All I can say is that you can be happy Matt is in the loving arms of our Lord and suffers no pain. He will be your guardian angel now and watch over you and his loved ones.
My deepest sympathy,
julieann
_________________________
Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile

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#147339 - 03/20/12 01:04 AM Re: and, the results are back.. [Re: julieann]
penners Offline
Senior Member (100+ posts)

Registered: 05/27/10
Posts: 135
Loc: North Carolina
I am so sorry for your loss. If I can do anything for you please call me.

Love u

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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#147341 - 03/20/12 01:39 AM Re: and, the results are back.. [Re: EricS]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
I'm sorry for your loss Christine. I know we knew it was coming but it is still a shock. Peace with you in the immediate future. May you find some solice in knowing you were with him to the end and it came peacefully. You are an amazing woman and your journey will be in our hearts forever. I know there were times you doubted yourself, but really, you are an inspiration to us caregivers. I pray for Blessings in your future until you see Matthew again.
Love you,
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#147347 - 03/20/12 05:28 AM Re: and, the results are back.. [Re: KP5]
Kerri Offline
"Above & Beyond" Member (500+ posts)

Registered: 08/08/11
Posts: 592
Loc: MA
Dear Christine,
I am so sorry that you lost your dear husband long before his body was ready to let go. I am grateful to know that as his passing came near, you were able to find some comforting moments that reaffirmed your love for one another.

I have been reading through your posts and you have had a long journey in such a short time. I can only hope that if I should be faced with a situation such as yours that I will have the strength and courage that you have shown in these last couple of months. You were a wonderful caregiver and Matt was very fortunate to have you. Something tells me that he would have been so for you if the roles were reversed.

I wish for you peace, comfort, and continued strength as you move forward in the coming times. Just know that your OCF family is here for you any time. I look forward to hearing from you again when you are ready. Take care of yourself, now. Allow others to take care of you, too. Rest, replenish, and enjoy that pup of yours. Animals have seemingly magical powers and just know when we need them for comfort.

Love to you and a great big hug,
Kerri
_________________________
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
42 years old now...I wasn't sure I would make it! Hoping for 40 more!

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#147348 - 03/20/12 06:33 AM Re: and, the results are back.. [Re: CMMoore]
Susan2992 Offline
"Above & Beyond" Member (500+ posts)

Registered: 01/04/06
Posts: 701
Loc: Pennsylvania
Christine, I'm so sorry about your loss. Matt is now at peace and without pain. Prayers headed your way for you and your family.
_________________________
Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2016

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#147351 - 03/20/12 11:53 AM Re: and, the results are back.. [Re: Susan2992]
kenswife Offline
Senior Member (100+ posts)

Registered: 01/05/11
Posts: 123
Loc: Massachusetts
I am so sorry Christine. Both you and Matt were so strong and brave through this awful journey. It will be so hard without him but your strength will continue to get you through and Matt will be watching over you. Make sure to take time for yourself in the coming days.
_________________________
Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended

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#147355 - 03/20/12 01:26 PM Re: and, the results are back.. [Re: kenswife]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
I can't type what I actually said when I read Matt had passed...
But Christine you did wonderfully and when I read your post my heart dropped I am glad for Matt it was quick and peaceful, I am sorry for you for your loss of your loving husband. I have no other words but God Bless your family in your loss of a dear father and loving husband.
You know where I'm at if you need.
_________________________
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

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#147357 - 03/20/12 01:50 PM Re: and, the results are back.. [Re: SUEZ]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Christine, I hope that in the days ahead, you will be able to find comfort in the remembrances of the tender moments you shared with Matt and with family, and that it will give you strength in the difficult days ahead. You have been an amazing caregiver in every way - please do take time to care for You.
_________________________
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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#147360 - 03/20/12 03:16 PM Re: and, the results are back.. [Re: Anne-Marie]
Shelley K Offline
Platinum Member (300+ posts)

Registered: 08/30/05
Posts: 307
Loc: North Hills, CA
My deepest sympathy to you and your family during this difficult time. Sending lots of love and prayers your way.

Hugs,

Shelley
_________________________
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.

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#147366 - 03/20/12 05:20 PM Re: and, the results are back.. [Re: EricS]
terrib Offline
Senior Member (100+ posts)

Registered: 02/05/12
Posts: 150
Loc: MN
Christine, I have followed your posts throughout this last difficult week. My thoughts and prayers are with you. You are a strong woman and an inspiration to many others. May God guide and comfort you in the coming days. Terri
_________________________
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.

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#147377 - 03/20/12 10:54 PM Re: and, the results are back.. [Re: terrib]
Gerri Offline
Supporting Member (50+ posts)

Registered: 08/03/10
Posts: 75
Loc: Nebraska, USA
My heart is breaking for you. It's just not fair. I hate this disease! Be proud of all you did for and with him while he was here, now it's time to focus to taking care of you.
_________________________
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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#147383 - 03/21/12 01:46 AM Re: and, the results are back.. [Re: Gerri]
ngk Offline
Gold Member (200+ posts)

Registered: 08/09/11
Posts: 269
Loc: CA
I'm so sorry for your loss, so very sorry. It's been quite the difficult journey.

_________________________
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!

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#147388 - 03/21/12 08:01 AM Re: and, the results are back.. [Re: ngk]
Sandy177 Offline
"Above & Beyond" Member (500+ posts)

Registered: 01/17/11
Posts: 571
Loc: California
Dear Christine,

Matt was blessed to have your love to see him through his journey. You are the most amazing caregiver--all heart and strength and courage.

In the quiet moments when all the company is gone and you are feeling his absence the most, please let beautiful memories of Matt's love for you bring you comfort.

You know the times when cancer was doing the speaking. Don't give those times any power in your life. Remember his smile, his gentle touch, his loving words.

Mourn in your own time. Take your time and don't allow anyone to pressure you into taking any steps for which you aren't ready. Be gentle with yourself. I am sending hugs across the miles.

Keeping you in my thoughts and prayers.
Love you,
Sandy
xoxox
_________________________
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.

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#147409 - 03/22/12 05:38 AM Re: and, the results are back.. [Re: Sandy177]
Pandora99 Offline
"OCF Canuck"
Patient Advocate (1000+ posts)

Registered: 09/14/06
Posts: 1328
Loc: Winnipeg, Manitoba Canada
I am so very sorry for your loss Christine. There just are no words to adequately express our sorrow at the premature loss of yet another OCF angel. He was so very lucky to have you there for him every step of the way. Be kind to yourself in the coming day. Please stay connected with us. We are here for you.

Donna
_________________________
Donna,61,SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV.New primary R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 11 yrs from 1st dx, 7 yrs since 2nd dx. Surviving isn't easy,but grateful for EVERY day.Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL!

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#147411 - 03/22/12 01:28 PM Re: and, the results are back.. [Re: EricS]
johnswife Offline
Supporting Member (50+ posts)

Registered: 06/16/10
Posts: 58
Loc: Michigan
{{{Hugs}}} to you Christine.

Peace.

_________________________
Bonnie

CG to husb John, 57, love of my life for 35 yrs.
Dx 2/10, T2N2cMx, SCC BOT & lymph nodes.
Non smoker. Biopsy HPV+.
No surgery - IMRT 35X + 7 chemos cleared BOT
9/10-mets to lungs.
2 rounds chemo, last one trial drug which did not work.

Lost the battle, but walking in Glory 9/7/11.

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#147415 - 03/22/12 09:59 PM Re: and, the results are back.. [Re: johnswife]
Karenj Offline
Supporting Member (50+ posts)

Registered: 12/17/10
Posts: 99
Loc: Michigan
My heart is with you. So sorry to read of Matt's passing but relieved as well that both of you will not have to suffer anymore with the unknown journey and all the different kinds of pains this disease brought to him, you and your family. He is at peace, you probably will be lonely and exhausted both physically and emotionally these next months but know you did everything possible for Matt in his final journey, one all of us will take someday. Time marches on and no one can stop it no matter how much we want to. I will be thinking of you in these next weeks and beyond - let us know how you are doing. Love Karen
_________________________
CG 2 Emmett,7/09 DX SCC rt tongue. T2N1M0, 1 node, marg neg.4/10 PET/CT clear, 9/10 C back. 10/10 Rad hemi, 2 tmrs mod diff. resec flr of mth. Flap 4 nodes/w/ext cap. 11/10 Peg, CX3 HD, 30 rad. 1/31 & 3/21 6/11/11 - PET/CT "activity" 9/11-all Clear. 12/11 peg out. 2/15 still all clear! 9/14 Prostate cancer treated with pencil beam proton therapy, best radiation experience. Keep it in mind as a treatment option for all tumors that can be seen including head and neck.

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#147419 - 03/23/12 01:00 AM Re: and, the results are back.. [Re: Karenj]
Gabe Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Registered: 08/02/07
Posts: 1301
Loc: Sydney NSW Australia
_________________________
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family


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#147420 - 03/23/12 01:23 AM Re: and, the results are back.. [Re: Gabe]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9063
Loc: PA
Thank you Gabe!

Christine, I know this is so difficult for you. My condolences to you and your family. May Matt rest in peace.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#147424 - 03/23/12 07:40 AM Re: and, the results are back.. [Re: ChristineB]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Hey everyone, I am here, I am reading.
I love you all, your words are always a great 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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#147426 - 03/23/12 12:18 PM Re: and, the results are back.. [Re: CMMoore]
walknlite Offline
Patient Advocate (1000+ posts)

Registered: 05/13/09
Posts: 1405
Loc: Oklahoma
Christine, I am so sorry for your loss. I will be praying for you ans your family during this most difficult time.
_________________________
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12

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#147427 - 03/23/12 01:09 PM Re: and, the results are back.. [Re: CMMoore]
Kevin - Memphis Offline
"Above & Beyond" Member (500+ posts)

Registered: 05/14/07
Posts: 619
Loc: Memphis, TN
When we lose someone we love, it seems that time stands still.

What moves through us is a silence, a quiet sadness, a longing for one more day, one more word, one more touch, we may not understand why one has left this earth so soon, or why this one left before you were ready to say good-bye, but little by little, begin to remember not just that he died, but that he lived. And that his life gave memories too beautiful to forget.

May the peace which comes from the memories of love shared comfort you now and in the days ahead.

Kevin
_________________________
8 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


“Remember to look up at the stars and not down at your feet. It matters that you don't just give up.”
Stephen Hawking

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#147428 - 03/23/12 01:45 PM Re: and, the results are back.. [Re: Kevin - Memphis]
slim Offline
Platinum Member (300+ posts)

Registered: 01/23/09
Posts: 475
Loc: PA
Originally Posted By: Kevin - Memphis
When we lose someone we love, it seems that time stands still.

What moves through us is a silence, a quiet sadness, a longing for one more day, one more word, one more touch, we may not understand why one has left this earth so soon, or why this one left before you were ready to say good-bye, but little by little, begin to remember not just that he died, but that he lived. And that his life gave memories too beautiful to forget.

May the peace which comes from the memories of love shared comfort you now and in the days ahead.

Kevin


Kevin, that was absolutely beautiful! It's sometimes hard to remember that part of living is dying and every day is a gift.

Christine, my thoughts and prayers are with you and your family. Today will be a difficult day. Take comfort knowing that we are all here thinking of you. Hugs.
_________________________
Wanda (47) caregiver to husband John (56) age at diag.
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-13 - HBO (30 dives) tooth extraction

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#147429 - 03/23/12 01:50 PM Re: and, the results are back.. [Re: Kevin - Memphis]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Christine - I'm sorry - for two reasons - firstly I completely missed this thread and truly wish I could have been here when you needed someone to vent to - though everyone here is so fantastic and supportive - I know my absence wasn't missed! Secondly I'm sorry about the passing of your husband. Sometimes they leave us long before their physical bodies are ready to. I had a palliative patient years ago who I nursed at home until she passed it was incredibly hard to watch her family suffer, and emotionally draining - I know through reading your prior posts how insanely hard for you it was. I am so glad your last few days were somewhat peaceful with him and amazed at how strong and wonderful you were through the worst of it. Losing someone you love is hard enough but when they are stolen from you in this way it's traumatic - the man you married is now with you and watching over you and no longer struggling. Hugs to you and many blessings - you are an amazing person.
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#147431 - 03/23/12 04:10 PM Re: and, the results are back.. [Re: Cheryld]
Shelley K Offline
Platinum Member (300+ posts)

Registered: 08/30/05
Posts: 307
Loc: North Hills, CA
Christine,

I know today is going to be very difficult for you and your family. I'm sure you are just drained both emotionally and physically. Sending lots of prayers and comforting thoughts your way. I hope when everything calms down you will continue to share with us on this board. You are a part of our OCF family and we will always care.

Love,

Shelley
_________________________
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.

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#147434 - 03/23/12 05:35 PM Re: and, the results are back.. [Re: Shelley K]
debandbill Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/12/07
Posts: 939
Loc: Punta Gorda, Florida
It seems that everyone has posted very eloquently so I will just say that I am so sorry and will be thinking of you today.

Hugs, Deb
_________________________
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

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#147439 - 03/24/12 03:03 AM Re: and, the results are back.. [Re: walknlite]
misskate Offline
"Above & Beyond" Member (500+ posts)

Registered: 02/15/07
Posts: 782
Loc: San Francisco,CA
Christine,

Thinking of you and sending you my condolences. You were his rock all the way through this devastating illness. I commend you for being so strong through it all. Please only remember the good happy times and not the rough ride you've had with this.

I hoe that after you have grieved you will find peace and comfort in his memory and go on to live a very happy and joyful life.



XOXOXO Kate
_________________________
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!

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#147441 - 03/24/12 10:31 AM Re: and, the results are back.. [Re: misskate]
Cookey Offline
"OCF across the pond"
Patient Advocate (1000+ posts)

Registered: 02/20/07
Posts: 1940
Loc: Harewood -Yorkshire, UK
Christine,it saddens me greatly to see that after all these years ,the end stages of this vile disease get no easier for either patient or carer.You did this journey rough just as too many of us have,but be proud girl you did it brilliantly.

love always
Liz

_________________________
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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#147446 - 03/24/12 09:52 PM Re: and, the results are back.. [Re: Cookey]
mick Offline
Contributing Member (25+ posts)

Registered: 02/16/12
Posts: 26
Loc: boston,ma
i just want to add my condolences. peace and love
_________________________
after 3 sarcma flr mouth,fially removed, reconstruct from thigh muscle. 1/2 saliva glands removed, plus more glands than i can remember

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#147447 - 03/24/12 10:37 PM Re: and, the results are back.. [Re: mick]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
I wanted to share with you all a lovely paragraph I found today...

I have only slipped into the next room. I am I, you are you. Whatever we were to each other, that we still are. Call me by my old familiar name,
Speak to me in the easy way you always did. Put no difference in your tone, wear no air of solemnity or sorrow.
Play, smile, think of me, and pray for me. Laugh as we always laughed at the jokes we shared together. Let my name be ever the household name that it always was. Let it be spoken without effect, without a trace of shadow on it.

Life means all that it ever meant. It is the same that it ever was, there is unbroken continuity. Why should I be out of mind because I am out of sight. I am waiting for you, somewhere very near-just around the corner....

All is well
_________________________
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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#147448 - 03/24/12 11:05 PM Re: and, the results are back.. [Re: CMMoore]
terrib Offline
Senior Member (100+ posts)

Registered: 02/05/12
Posts: 150
Loc: MN
Very beautiful and what an appropriate time to find this, thanks for sharing.
_________________________
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.

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#147449 - 03/24/12 11:54 PM Re: and, the results are back.. [Re: terrib]
Gabe Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Registered: 08/02/07
Posts: 1301
Loc: Sydney NSW Australia
Very moving and I am sure a comfort to you when you read it Christine. Worth reading more than once!
Love and hugs to you,
Gabriele
_________________________
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family


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#147455 - 03/25/12 05:07 AM Re: and, the results are back.. [Re: terrib]
Cookey Offline
"OCF across the pond"
Patient Advocate (1000+ posts)

Registered: 02/20/07
Posts: 1940
Loc: Harewood -Yorkshire, UK
Strange you should have written that Christine.I chose that for Robins funeral and his best friend cousin David read it. xxx
_________________________
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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#147456 - 03/25/12 05:48 AM Re: and, the results are back.. [Re: Cookey]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
It is beautiful. I am going to send that in a card to Matt's daughters. I found a group called widownet and it was posted by someone there. Thank God for support groups!
They are heaven sent for people with dysfunctional families like mine!
_________________________
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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#147460 - 03/25/12 04:22 PM Re: and, the results are back.. [Re: CMMoore]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Every family is unique - your's is far from disfunctional - and that was beautiful! Hugs
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#147461 - 03/25/12 04:30 PM Re: and, the results are back.. [Re: Cheryld]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 493
Loc: NW Ohio
I guess every family is disfunctional in it's own way. I guess I think that my family puts the "fun" in disfunctional:). Hugs to you Christine, you and your family are in my thoughts and prayers. Yes. That was a beautiful piece.
_________________________
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.

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#147481 - 03/26/12 07:46 PM Re: and, the results are back.. [Re: zengalib]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
That's our family saying also!! We also put the FUN in! smile
You are just fine Christine and so is your family.
_________________________
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

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#147588 - 03/30/12 07:01 AM Re: and, the results are back.. [Re: SUEZ]
misskate Offline
"Above & Beyond" Member (500+ posts)

Registered: 02/15/07
Posts: 782
Loc: San Francisco,CA
very nice christine. I have cut and pasted it for myself.

Glad you view death this way.. I do too.
Take good care. KATE
_________________________
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!

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#152761 - 08/03/12 05:58 AM Re: and, the results are back.. [Re: CMMoore]
HankXavier Offline
Senior Member (100+ posts)

Registered: 07/31/11
Posts: 131
Loc: Ohio
Well. I fled this place so that I could put cancer out of my mind and live my life unassaulted by the mad, ever present specter of this disease. But tonight I suddenly remember that I had cheered Matt on, was rooting for Kelly and Ron, pulling for Jim and Nate and wondered how they were doing. I am stunned and struck to read that he is gone. I have read every word in this thread and I want you to know that I am glad you recorded this and that I know his story. I am blessed to be able to witness the saga of struggle for life because right now I am having a revival of my love for it, for how precious it is and how fiercely it must be defended. I am sorry for your hurting. So sorry for your pain. I wish I could hug you until dark turns to dawn and all the hurt is gone. You have made a titanic statement in affirmation of life here and I hope you know it didn't go unnoticed. All my love and heartspace for you and the girls and your family. My deepest love and respect, Hx.
_________________________
Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]



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#156322 - 10/16/12 02:34 AM Re: and, the results are back.. [Re: CMMoore]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
I'm tearing up at your post Hank. Life is so very precious. Love to you.
_________________________
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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#156333 - 10/16/12 09:25 AM Re: and, the results are back.. [Re: CMMoore]
Pandora99 Offline
"OCF Canuck"
Patient Advocate (1000+ posts)

Registered: 09/14/06
Posts: 1328
Loc: Winnipeg, Manitoba Canada
Glad to see you back Hank. We fully understand the need to pull away at times - but glad you have come back. As a survivor, I'm sure - should you pop in occasionally - that there is some new person who would benefit from your experience.

Donna
_________________________
Donna,61,SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV.New primary R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 11 yrs from 1st dx, 7 yrs since 2nd dx. Surviving isn't easy,but grateful for EVERY day.Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL!

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