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#33537 07-17-2004 04:04 PM
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Wow Gary,
Thanks for sharing. I love how worship can draw us into His peaceful presence. Its great that you are back singing. I got right back in there as soon as I could get my mouth open. I is still guite painful after singing for an hour or so but to me it is worth it all. I still have to sing until I can't sing any more.
Kelli

#33538 07-19-2004 03:39 AM
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Kelli and Gary,

I happened to stumble on the site Gary speaks of also. It was July 22, 2003. I received confirmation of my diagnosis July 21 from the biopsy July 18. I had been to many doctors for about 7-8 months because of the swollen lymph nodes in my neck.

I was working 450 miles from home and every morning around 5:30 am I was up and at the health club working out. I had started working out a little in December 2002 immediately after finishing the Hep C treatment...brutal in itself.

I met many people at the health club and one lady started talking to me about the church she attends, the gospel band her husband was in and the concerts on the third Saturday night of every month they had. This lady gave me a copy of the CD the band had recorded and told me to enjoy it. It was a more bluegrass style of southern gospel and I listened to it every Monday and Thursday during the two hour drive to the airport.

I distinctly remember the morning of July 22 and telling her of my newly diagnosed cancer. One morning shortly therafter a man nervously approached me and told me he was praying fervantly for me every day. I hugged him, thanked him and started talking to him. He then told me he was the bass player in the band and it was his wife that had given me the CD. I told him which song was my favorite and he smiled telling me that was the song he had written for a dear friend that was no longer with us and that was him singing the song. I felt the chill down my spine and I knew all of this made perfect sense to me.

Needless to say, I listed to the CD on the way to and back from radiation and during chemo. I have to admit I listened to my favorite song over and over at times and each time I could see the face of Jesus smiling at me through this man's eyes.

God has blessed me with so many stories during this disease and through my life. He has such a way of using our faith to get us through the most difficult times and using our faith to help us enjoy the great times a little more.

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
#33539 07-19-2004 09:29 AM
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Ed, thanks so much for sharing that story, awesome!! Love, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#33540 07-25-2004 01:00 PM
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I have tried but I just can't figure out what God wants. I mean whose side is he on...the Dallas Cowboys or the Washington Redskins?

Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
#33541 07-25-2004 02:24 PM
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Danny G,

He is most likely on the Green Bay Packers side!!!

This thread has kind of drifted to many topics so I thought why not add to it.

When I was told I had stage 4, poorly differentated margins last July/03 I knew I was in deep dodo.
It affected me more last July with the first dx than the news of a mets to my lungs as well as a reoccurance in the surgical bed this June.

I have met more decent, loving, supportful people
on this website that I met in 54 years. I cherish that. No one can ever take that away from me. At times I can spend several hours on this website, at times I need to back away. I don't want to let this diaease dominate my life but it's hard not to turn on the computer and offer someone else support and read the latest news. We need this as human beings. Does anyone else besides me need a good cry every now and than? I grieve for my old life. My new life sucks. Without all the support from OCF members I would be a basket case.

Thanks for letting me ramble on,

Love Ya All, Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#33542 07-25-2004 04:25 PM
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Oh Danny, you make me so very proud to know you. Your post makes me sad and happy at the same time. I feel like I've known you forever,maybe it's that all my life I knew at some level that I would "meet" someone of your character. Who knows, all I know is that I truly love you Danny.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#33543 07-25-2004 09:12 PM
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Hi Danny Boy
Of course we are with you on this and at times like this, this is the best place to come, to know that the fight is not your fight alone, you can fight the battle on your own, but to win the war we all need to fight together..
Sunshine... love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
#33544 07-26-2004 03:02 AM
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Danny,
This is some really good stuff here. Yea, I can relate to spending hours on this site. I'm pretty new to this site and I cannot get enough of it!
Candle


SSC Larynx/Supraglottic Laryngectomy'98. Max Radiat-'98,'01. Liver resect-'00. Metastasis to lt lung'02&rt lung'04. Carboplatin&Taxol&Ifosfamide&Taxotere'00.Cetuximab'02.Cysplatin&Topotecan'03.
#33545 07-26-2004 03:07 AM
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God Bless You Danny Boy, Love, Carol p.s. I have spent many, many hours on this site too!


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#33546 07-26-2004 04:40 AM
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Danny Boy,

You said it so perfectly. I sometimes have to stay away from OCF for a few days to "decompress", but I find myself being drawn back every time. Sometimes it's torture reading all the survivor stories because I can't help but think "why not Heather, too?" At the same time, I, too, hope I can be of some help to others. My feelings are so contradictory I don't know half the time if I'm coming or going.

And I certainly do need a good cry every now and then! Lately it seems to be more NOW than then. I cry not only for the loss of Heather, but for all the souls lost from this terrible disease. Hearing that Lynn had died was really hard. My heart aches for her husband and 2 young children. I can't help but wonder if this suffering will ever stop.

Obviously, as a caregiver instead of a patient, my plight isn't the same as yours, but I still feel a kinship with you. I can't wait to meet you guys. See you in Vegas!

Rainbows & hugs, wink
Rosie

P.S. I've decided that as long as I am financially able, I am going to donate to OCF every time the forum loses a member to this disease. This one is for Lynn.


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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