#80397 09-13-2008 11:01 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | I have gotten a few pm's concerned about my well being since I haven't been on the boards for a while. I appreciate the concern very much. Actually I have been very busy consulting and getting my life back on track. I have been very busy in the entertainment aspect of my life. My singing voice has finally recovered and the 2 bands that I am playing in have been doing very well.
My total recovery from the whole cancer adventure took longer than I thought because even though I recovered relatively quickly from treatment it took much longer to heal the emotional scars. From time to time I need to take a break from cancer. I can assure everyone that I am in good health and just passed all of my 5 1/2 year scans, scope and lab tests.
Gary Allsebrook
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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)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Good to see you here again. Congratulations on the 5.5 years
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
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Hi Gary!
Just sitting around and thought I would make a quick appearance myself and low and behold I see you are pretty busy tonight. Like you, I had to take a break. I have gone through a period of losing a few and then in June my brother was diagnosed with kidney cancer. He thought he had pulled a muscle that turned out to be metastatic renal cell cancer from his kidney and is in his liver, lungs and a few lymph nodes. It was very tough to face for me. I can truly relate to the emotional scars but I have found myself busy enough to almost forget sometimes.
I am working in Neewpawa, Manitoba, Canada right now as the Vice President of Finance and Information Systems. I truly believe at this point in time I have the absolute dream job! I have been commuting from Dallas every week since July and soon will move to every other week working out of the home in Dallas. I tackled a real challenging opportunity working for a really great company and I am really happy to be working with my pigs again. I doubt many could say that but after 23 years working with pigs and pork, I am once again in the industry I have spent most of my life in. Life is grand!
I have been told I could get life insurance pretty regularly since 3 years out but they turn me down each time. The last sales slug told me without fail I will have life insurance 10/08/08, the magical 5 year point. I had a bit of extra work to get a work permit in Canada because of the cancer and hep C and I don't really know if I can get the 2 year permit extended or make it through the -40 winter but I can't ask for much more in life other than have Susan in the same house M-F.
It is really good to hear from you and I am glad you are also keeping busy LIVING! Hardly a week goes by I don't think of you and many more and the joy I feel knowing the friends I have made during the darkest of times.
Take care and may our paths cross again someday soon.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | It is truly great to get messages from two familiar old friends,and even better to read your brilliant news.
love and congratulations
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.
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Ed,
interesting that I too have been working/consulting for a company in Canada that has developed a CAD system for early detection of breast cancer (2mm lesion). I will probably need a Candadian work visa at some point.
Thanks Cookie,
I hope that all is well with you also.
Gabe,
thank you.
Gary Allsebrook
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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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Gary & Ed,
Great to see you back and both doing well.
Ed, I am so sorry to hear what your brother has been through.
Congratulations to both of you on reaching your latest milestones.
I'm sure we have all needed to take a break now and then. I have done it a few times myself and then I find that when I do come back, I read through all of the posts that I've missed. This take so long, that I have decided not to take any more breaks.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Don't be such strangers. Not only do those of us who know you worry about your well being, but we all miss the wealth of knowledge that you both have. Gary has forgotten more about radiation that I will ever know, and Ed has a depth of emotional understanding that a science nerd such as myself will never approach nor be able to offer. For sure people need to move on.... but stick your heads in once in awhile, we all care about you guys and miss your presence.
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Thank you all for the kind words! I almost forgot to mention that I completed training as a hospital chaplain and start an internship as soon as I get over this short term hump at work. I also participated in a couple of health fairs representing OCF. I was invited to another in the inner city of Dallas around high-risk people for oral cancer sometime in the next few months. I (actually Susan!) made up a board of many oral cancer "victims" from the website and play both the Jack Klugman and the Blythe Danner PSA's. Thanks Brian for giving me an opportunity to give back just a little bit.
Somehow in this world, I have found myself face-to-face with cancer survivors at various stages of their journey on a very regular basis. The stories go on and on but the common theme has been steadfast. I have had many friends and family battle cancer and so many have reached out for a guiding hand, a shoulder to lean on or just a pair of ears to sit and listen. People I didn't know have come to me telling me how I have inspired them and have even asked me to walk with them through their journey. I am touched each and every time.
I will drop in from time to time but know I will always carry all of you in my heart and thoughts throughout life.
I still would like to make some type of get together soon.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | So good to see you both on the board and doing well. You are both so knowledgeable and compassionate. Love from Helen
RHTonsil SCC Stage IV tx completed May 03
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Gary and Ed:
You both have been missed here. Its so inspiring to see people who have moved on in such positive ways. Best of luck to both of you. Please stop in time to time even if just to say hello.
ChristineSCC 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  | | |
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