#93386 04-07-2009 11:46 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | First, thank you OCF for the nice Happy Birthday email today! It was right on time as I was feeling a bit blue today. My uncle whose wife was killed on Thanksgiving Day in 2005 by a drug dealer running from the police was remarried last summer just after his girlfriendwent through the whipple surgery and treatment for pancreatic cancer (if you remember The Last Lecture by Randy Pausch). Things were looking really good at the Fourth of July party at their house and it looks like she probably won't make it through the weekend. My uncle that is just younger than my dad but 2 steps up from my other uncle died about a year ago from Alzheimer's. All I could remember from the call tonight was my uncle telling me losing two wives and a brother in less than 3 1/2 years was almost too much to bear. My heart just aches for him and now that midnight has passed here, it is his birthday. I told him to call any time he wanted to talk because I sleep about an hour at a time since December 20.
This is where the Merry Christmas comes in. On December 20 I was stirring a crock pot full of black bean and tortilla soup Susan made for me and somehow when I lifted the lid the crock pot slid and the front leg fell off of the kitchen island and although I protectd my radiated neck instinctly, it melted my little finger, splashed my face, neck, left eye, right arm, right leg, right side an collected along my belt line. The ER sent me to the burn center by ambulance and my finger looked like a raisin. They wanted to cut it off but I would't let them and it has now healed. My leg although really ugly and itching all the time has pretty much healed but my doggone arm looks like it just happened yesterday. The pain is unbelievable and the arm is burned so extensively there is no comfortable way to sleep so when I move, it wakes me up. Add all the neurological crap and if I lift my arms other than straight down my side, the scapula cramps up.
To add insult to injury, literally, Canada would not let me move there because of history of Stage IV Oral Cancer and Hep C. Work wanted me to fly in Sunday night and work from 8 am Monday to 5 pm Friday so that puts me on the 6:30 am flight back to Dallas from Winnipeg. I reminded them my contract said every other week and only available by phone while in Dallas and they said we need someone here all week every week and escorted me to the airport 2 days before my vacation to Japan an refused to even give me my 3 weeks vacation pay or 90 day contract terminatin without clause.
My brother has Stage IV Kidney Cancer that has spread to his pelvic bone, liver and lungs and tonight I am thinking how would I ever make it without my best friend in the whole world?
Then low and behold, I get a Happy Birthday from OCF email and it's all good again! Thank you all for always being there and especially thank you for letting me have my little pity party. I was actually sleeping before midnight for the first time in many weeks and Susan got a cramp in her leg and kicked my burned arm and woke me up so here I am.
I am so sorry for dropping out of sight but from August to December 19 I worked about 20 hours a day getting some systems in place for some low life ungrateful immmoral unethical jerks. Thanks for letting me unload. I know so many of you are facing so much more than me but at this moment my selfishness is forcing me to look only at my small circle of life and family.
I have heard what doesn't kill you makes you stronger and I was thinking how glad I am I don't have a gun around so I could be a bit stronger. I don't remember where we left all this religion stuff but your kind thoughts and prayers right now would be greatly appreciated. I hope I am not offending anybody but only reaching out for a shoulder to lean (cry) on tonight.
Thanks for always being here!
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 | Ed i wished you happy birthday on the neck cramps thread but i guess it can be said again so HAPPY BIRTHDAY  . When Rob died,then petey,then brenda and then robs brother went missing,then the court case,i began to wonder just how much pain and bad news one human being could take.I also wondered when it would be someone else turn!!!Guess i know now. I don't know how we find the strength to survive all these knock down blows,but i do know that turning up here every day helps.There always seems to be someone worse off than you feel yourself,and always someone new who needs help or advice or just a shoulder to cry on.My shoulders have grown to the size of a rugby prop forward and thats what gets me through every day.The knowledge that experience brings comfort and words can sooth,and the hope that what you say and what you do makes just a small difference to someones life. I know you will find that comfort here as the dawn breaks in the US and your friends rally round. LOVE 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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Thanks, Liz. I am truly sorry your husband passed away while I was gone from here for so long. Please accept my belated condolences.
May every day bring you more happiness than the day just passed!
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Uptown, you have been thru a lot of life's tests it seems and you keep on chugging from what I read. Happy Birthday and keep up the courage. It inspires others of us.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Ed,
If it wasn't for bad luck....
You're a trooper, what more can I say.
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: Sep 2008 Posts: 130 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2008 Posts: 130 | Happy Birthday Ed,
I will add you and your family to my prays.
If you need someone to just talk/type to, or a shoulder/computer to lean on, please feel free to PM, email whatever me.
Again Happy Birthday
Amy
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Dear Ed,
I can't believe all these bad things are happening to you. You have every right to throw a pitty party. Dealing with all the emotional issues while in constant pain and getting no sleep would leave anyone else in deep depression. It always amazes me where you find all the inner strength to deal with this, much less have the enrgy to work 20 hours a day. I'm sorry to hear you lost the job, but those SOB's didn't deserve you. I hope things turn for the better soon and have a Happy Birthday.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Wow.
I remember a cartoon character called "Bad Luck Schleprock". He would walk around with a black cloud over his head, and good Lord, it certainly sounds like you have had enough happen to you to be his twin. I am so very sorry that all of this has happened to you. Sue the SOB's who owe you the money from your job.
I know there are many days where it is hard to find something to be grateful for. Another birthday is a good thing. And we are all grateful that your birthday brought you back to us. You are invaluable.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Ed,
Happy Birthday and I hope you are feeling better every day.
You are always welcome here with your great advice and caring posts.
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Thanks, as usual, everyone. Eileen, I just wish Susan would have had a crystal ball before she married me. I just don't think she has the intestinal fortitude to hang with this man of experiences! She ended up the other night at the Baylor Heart Hospital with chest pains. They kept her a day with a lot of tests and confirmed she has a huge and kind heart in good condition. She had actually quit smoking for so long I don't know if it has been months or years and I caught her sneaking a few lately. We did make it to Japan for a bit and rode the bullet train and had such a great time trying to keep up with my 80 year old uncle. I never knew a man with such short legs could walk so fast and so far!
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
| | |
| Forums23 Topics18,249 Posts197,138 Members13,322 | | Most Online1,788
Jan 23rd, 2025 | | |
|
