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Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
Well I am alive and somewhat well (no recurrances anyway). But I realize now, that I suffer from depression and PTSD and oftentimes have a difficult time focusing, even invoicing for work I have already done. Life also got busy -probably to escape the depression. I watched the show on HBO "Wartorn" and had so many of the symptoms of PTSD that the light bulb finally lit up. I can't remember when I slept 8 hours straight.

I went back to college and found it much more challenging than I thought. My wifes mother died and I lived at a hospital for a month sleeping on chairs in the waiting room (complications from a surgery gone awry). I have a difficult time staying on task, miss deadlines and that is not good for business. I still have neck spasms and sometimes they are worse. My blood pressure is high (which it never was before) and I have many dizzy spells. I was in foreclosure for almost a year and somehow obtained a HAMP loan modification which leaves me a whopping $120/mo left after my senior advantage deduction from SSDI. I have made attempts to re-engage in the forum but it is very difficult reliving cancer all over again and again. But you can't really escape it - it's always there waiting in the wings like the grim reaper. The financial devastation is something that I am sure anyone with some days can understand. Business contacts are compromised, the economy is in the toilet and the people Obama put in to run the FDA are a bunch of idiots. I have to hustle every month to survive and have been on austerity for as long as I can remember.

I spent last year selling my stuff on Craigslist, which is probably a good thing because I had way too much stuff. Selling stuff on line is actually a full time job. You have to have about 20 items posted, write the add copy, take great photographs, and then you have to close the deal when the buyer shows up. I knew what "bundling" was long before American Pickers came on the air.

Oftentimes I feel like I have let everybody down - wife, bandmates, business partners, friends, Brian, OCF, etc. My wife suffers many of the same maladies that I do and we both "present" well so people don't see the brokeness.

I am grateful for the almost 8 years of being cancer free (yesterday was the 8th anniversary of my original diagnosis), not to leave this thread in a funk. I wish you all good health...

Last edited by Gary; 11-23-2010 07:52 PM.

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)
Joined: May 2009
Posts: 1,412
Patient Advocate (1000+ posts)
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Joined: May 2009
Posts: 1,412
I am still here, and check in every once in awhile. Work is crazy and I now suffer from depression as well as PTSD like Gary. Working through that with my psychologist and zoloft. I sure can tell when i forget to take it. With boy scouts, work, and everything else, I have very little time on here. I will not be posting much for awhile, but will be lurking. It hurts to type, write, lift things. I am going to see a specialist Dec 2nd to find out what is going on. My PCP thinks the port caused some nerve damage. Who knows?


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
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Joined: Nov 2006
Posts: 2,671
Gary - you most certainly have not let everybody down. I remember so well that you were there when my son was in Tx with your compassionate help for us and for so many others. I was away for a while, too and came back recently, but when I see how well others are taking care of all the "newbies" that come along, I think maybe there should be an "alumni" for those of us who have "been there, done that". I went back to college and it certainly was challenging for me, too, but it kept me busy so I could get over the Big D (divorce). I'm not a cancer survivor, but there are many times when I have to struggle to keep from thinking about all the "what ifs" of my son's cancer, his depression and resulting financial problems. He sold practically all his stuff on eBay. I, too cannot remember when I've slept 8 hours straight and I've given up trying to do that. That's why I sometimes post on OCF in the wee hours of the morning. Rather than toss and turn, I figure I might as well see if anyone else is up or if I can offer a word of encouragement even if just to say, "yeah, I can't sleep either." But whenever a bright spot comes along, I really try to hang on to it and savor it for as long as possible before the next "funk" comes along (like the bright spot when my 10 yr old grand-daughter sang for me, a musical recitation of all 50 states!) Gary, I am glad that you are alive, and for your almost 8 years of being cancer free! It's good to hear from you and know that you are still around. It's like old home week just hearing from all those great OCF friends that were around when my son and I were in the throes of just making it to the next day, the next hour. Gary, if you are experiencing PTSD or depression, I hope you find something that will help and that both you and your wife can get to feeling in a better place. My daughter tells me "Life is Good". I'm thinking, she could be right. It could happen.



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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Patient Advocate (old timer, 2000 posts)

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Gary - Do not ever say that you let me, OCF, or any of your cyber family here down. Nothing could be further from the truth. With thousands of really meaningful posts on these forums, (not just the well wishes kind) you have imparted knowledgeable information to more people than you will ever know, considering the thousands of lurkers that visit the boards, who read past threads to glean information. You have likely forgotten more about radiation than I will ever know, and were always generous about sharing that wealth of knowledge with me and with the posters here.

I am sorry to hear the extent of the story behind the story you have shared with me on the phone. Lord knows you have dealt with a lot. But don't ever feel like you let anyone down, especially when you MUST put your own and your family's needs first, and do not ever forget that we have been friends since the beginning of OCF.... from before Las Vegas to today. That will never change. There isn't a poster here that wouldn't come to your aid if you asked.

But I know you, and you are much like our good friend Glenn, GRHS, who we both cared for, (perhaps even loved, as much as one man can love another) who was as tough as nails, never gave up even after giving up a kidney when it went there, part of his liver when it went there, part of his lungs when it when there, and despite it all - was never one to complain, or ask for help. I wish you better days brother and fellow traveller. Call when you can.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Joined: Oct 2008
Posts: 251
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Joined: Oct 2008
Posts: 251
Amen, Brian!

Gary,

Thank you from all of us, for all that you do.

May the Holiday Season bring you brighter days.



Catherine

2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
Joined: Sep 2006
Posts: 8,311
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Patient Advocate (old timer, 2000 posts)
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Posts: 8,311
Gary,

Sorry to hear about all the crap you have had to put up with but one thing should be perfectly clear and that is your contribution to the OCF. Don't even try to go there. I loved and always looked forward to reading your posts because I always learned something especially your knowledge of the radiation field.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Posts: 3,082
Gary

Ditto on the above posts. Realistically taking a 90 day break after posting almost continuously since Dec 2002 doesn't qualify as letting OCF down. In academic circles, you would be a Poster Emeritus, i.e., someone who has earned full retirement for his efforts, but still has much to contribute just on a different less structured or regular schedule.
Hope this Holiday season goes better for you than this past year sounds.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Gary, Im happy to see your post showing your accomplishments and that you are doing alright. Im also sad at the loss of your mother in law. Im sad that you feel any remorse that you have not been on the boards, and sad because of all the other struggles you have endured. Thank you for being so selfless and dedicated to OCF. Your posts have helped so many people including myself.

Everyone needs time for themselves and sometimes life can catch up to the best of us. Please do not feel that you have let anyone down. We are all in your corner and right here anytime you want to stop by. Hope you enjoy the holidays. Wishing you all the best!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Nov 2010
Posts: 4
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Joined: Nov 2010
Posts: 4
I was away for quite a while and came back recently when my son was scheduled for a CT scan and I felt a little bit like people who only talk to God when there is a problem. Well, I did that, ( talked to God) but I felt I could get quicker answers from the OCF friends and I did! I am sticking around now, even though my experience as a CG is not too recent anymore, so I can see how everyone is doing and in case I might be able to add something useful.

Joined: Jul 2010
Posts: 95
Supporting Member (50+ posts)
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Joined: Jul 2010
Posts: 95
Depression is one of the most difficult problems that HNC patients have to face. The challenges of life in the shadow of cancer make it even more difficult. The inability or difficulty to speak in many people make it hard to express emotions and can lead to isolation.

The social stigma associated with admitting it makes it difficult to reach and treat many individuals that need therapy. Surgical cure is not enough and there should be more emphasize about mental well being afterward.

Depression is part of the normal mechanism of coping with adversity. There are several stages in the way that most people cope with a difficult new situation such as being diagnosed with cancer. The first stage is Denial and Isolation, than Anger, followed by Depression, and finally there is Acceptance.

Some people get �stuck� at a certain stage such as Depression, or Anger. It is important to move on and get to the final stage of acceptance and hope.

This is why professional help and understanding and help by family and friends are very important.

One can read more about depression in my Blog: http://dribrook.blogspot.com/p/overcoming-depression-after.html

Itzhak Brook MD

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