Everyone has a story...My story

tommybracing · Regular Joined: 31 Jan 2008 Posts: 18 Location: Oklahoma

I am new to this forum, but not new to cancer. In late 2003 and 48 years young, I began to lose weight. My only symptom was stomach pain after meals. In March 2004 after several attempts to figure out what was wrong, I had a CT scan. It showed a growth the size of a grapefruit in my sigmoid colon. My Dr sat me down and told me "you are in trouble" and scheduled my first surgery for April 2004. They removed the tumor and 8" of my colon, part of my small intestine, bladder, stomach and all the lymph nodes there. I was definately stage IV with liver mets. I had 5fu/LV all of 2004 and into 2005. Then I developed blood clots in my leg which required hospitalization and surgery in install a clot filter. Then I had RFA on liver mets, changed chemo to Erbitux. In 2006 they attempted a liver resection, but there was too much disease and they installed an HAI pump in my abdomen and sewed me up. The HAI pump worked great and in 2007 my liver tumors were all calcified. But the cancer found something new to work on and it jumped into my lungs with innumerable nodules and two distinct tumors. Another change in Chemo to Camptosar/Irrontecan. Avastin in there somewhere along with Xeloda.
I have taken about everything they have thrown at me. I am now back on the FUDR in my HAI pump and Vectabix.
My point in all this is....my Doctor gave me no chance to even leave the hospital after the first surgery, and yet here I am 4 years later. I still work full time (except for treatment) and enjoy life. I know the day will come when I can no longer continue to fight...but that day is not today.
Good luck and God Bless you all.
Tom

tommybracing · Regular Joined: 31 Jan 2008 Posts: 18 Location: Oklahoma

Hello, Hope and Prayers for all on this board. Winter is finally over and I am looking forward to Spring and Summer with renewed vigor. My cancer is still growing with my CEA going from 82 to 160 in the last two months. I will have another CT scan next month, but really what is the point. I know I'm getting the best care they have, and I'll just keep my head up and keep going. It has been a long winter here and I'm glad it's over. I will likely not be spending as much time researching my cancer and treatments and more time enjoying life. I'm going to be a Grandpa in June so that will give me another reason to live....no regrets, no sorrow, only Hope for the new life coming to my family.
I wish for health and happiness for all who visit this site. It has been a great comfort to read about others experiences and I wish you all well.

brainman

Tom, I am very sorry about your cancer. I also am sorry that no one has replied to your original message until now. You sound like a very brave man and you have a reason to continue to live. My first grandchild was born last summer Very Happy

.

You are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

tommybracing · Regular Joined: 31 Jan 2008 Posts: 18 Location: Oklahoma

Thank you for all you do on this website. your input to all the peoples questions and comments are greatly needed. I lost my best friend to esophogeal cancer last year and we were diagnosed at the same time. Since then I realize every day is a gift to me and I will use them to the fullest. I notice every sunset, bird singing, the wind in the trees, things I never took much interest in until the cancer. I just don't sweat the small stuff anymore and I do what I enjoy.
Thanks again and I hope everyone has an enjoyable Spring.
Tommy

Darwin

Tom you are an inspiration!
_________________
Ex husband's diagnosis was January 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment 5FU + Avastin 24/7 pump plus radiation to pelvic area and planning radiation spheres injected directly into the liver tumours.

DulcimerGal

Tommy - thank you for posting - your attitude is awesome.
I know I am spending too much time feeling sorry for myself - reading your letters over and over is an inspiration.

Please keep posting to let us know how you are doing. Are your cancer markers still increasing? So what do you have planned for fun?

DulcimerGal

tommybracing · Regular Joined: 31 Jan 2008 Posts: 18 Location: Oklahoma

Thank you for your responses. I am determined that if the cancer takes my life, it will NOT take my spirit. I am one of "those" people that always seem to be happy, even if things are going badly. If I can inspire one person to get a colonoscopy (and I have) and it saves their life (it did)....that truly means something. My CEA was up to 495 last month, and the most recent was 277. That is still way up from a few months ago. I have a CT scan today, so I will have those results at my next Dr appt.
And as far as fun goes, I am leaving town this weekend with many friends and going to a Mustang car show in Eureka Springs, Arkansas. I'm showing a 1969 Mustang that I built over the last two years during my hardest chemo. I call it my "Therapy" car. And last weekend I went to my 30 yr college reunion (I was a music major) and I played my trumpet and sang for everyone...I still got it !

FOUR YEARS ago tomorrow I had my first surgery, and I'm still going strong. Be Strong, don't let cancer take your spirit. Educate yourself on your condition and treatment options. Be Proactive. You can beat this !
Tommy

DulcimerGal

Tommy - have a great time at the car show! In fact - have a blast! I hope your car wins!

Your encouragement is contagious, I read your note and told my husband he has to take me away this weekend - no matter how bad I feel.
We have a little cottage at the Chesapeake Bay and this weekend is supposed to be warm - so we are going and if I feel bad I will just wrap myself in a blanket and stare at the bay all day....it is a beautiful spot.

As for music - well - I am imperssed with your trumpet story! I love to play the dulcimer, and one of my recent goals was to learn the Hurdy Gurdy - I kind of gave it up when the cancer got diagnosed.

I'll know I'm off the pity party when I feel like learning it again!

I am also trying to stay educated - thanks again for your post and keep us up to date on your condition!

DulcimerGal

tommybracing · Regular Joined: 31 Jan 2008 Posts: 18 Location: Oklahoma

here is a copy of the email I just sent all my friends. Sums it up for now.

Hi all, here is the latest news on me. I had a CT scan last week which shows the tumors in my liver are stable again due to the active drug FUDR being put back into my HAI pump. The doctor is happy about that. But the tumors in my lungs are growing and more numerous than before. the CEA (cancer marker in my blood) has went from 112 on 1/7 - 176 on 1/28 - 240 on 2/26 - 495 on 3/25 - 721 on 4/22...this is really bad news for me. It shows the chemo has been uneffective on my lung tumors. But my doc started me on another chemo yesterday called Mitomycin-C. This is in addition to the Vectibix I'm taking in my port and the alternating FUDR/Heparin in my pump. The doc checked me over and asked how I feel, and I still feel good for all I've been through. I went to my 30yr college reuinion recently and sang and played the trumpet for everyone, had a great time and think I did a good job. Last weekend a bunch of my friends and I went to Eureka Springs, AR for a Mustang show. It was good to get away from all my problems for the whole weekend.

That is all for now, I will get you more info as I know what is going on. But for now, keep me in your prayers and I promise to keep going forward. This cancer will eventually take my life, but it will never take my spirit.

Love to all
Tommy

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 703 Location: UK

Hi Tommy - your kind of courage is so enviable! It is good to read of someone who is facing all the problems of cancer and its control, and at the same time is resolutely getting the most from life.

Thank you.

Much power to your elbow Cool

milliesmom · Regular Joined: 18 Mar 2008 Posts: 34

Hi,
I wanted to reply and tell you that when my brother was told nine years ago to go home and die, he went home and was given lots of prayers, did guided imagery, (what I call, 'Physician heal thyself'), and then I found a surgeon for him. This is the same surgeon another doctor found for my rectal cancer.

Anyway back to my story. Today my brother is still alive and well. He also has a friend who the doctors had given up on, and she did the guided imagery plus prayers and she is still up and kicking. So it ain't over until the fat lady sings.

Now for my question, my first medical oncologist told me that he has seen some people who didn't have cancer at all and had CEA's of over 1200. So, just how good is this test?

Or, do we know how we are doing doing by our own initial baseline?

I'm new to all his.

Thanks,
Milliesmom IIB rectal cancer, port put in today, chemo on Monday

tommybracing · Regular Joined: 31 Jan 2008 Posts: 18 Location: Oklahoma

milliesmom,
I am no doc, but my doc seems to rely heavily on a combination of CEA and PT scans to "gauge" my response to the chemo. I read where there can be false CEA readings due to "other" causes, (they really don't elaborate). After I had my first surgery, my CEA was 915 at my first treatment. It came down dramatically the first year and by the second year of treatment it was as low as 2 !! Then it started going up and my doc started trying other combos. The CEA has been up and down all over the place. He added Mitomycin C last week and I have no additional side effects from it. It looks like grape coolaid and the nurse said it can cause the whites of my eyes to take on a blue tint... I want a pic of that because I have Paul Newman blue eyes (wolf eyes). HA
I never heard of guided imagery, but I will check it out.

I have heard the term "inspirational" since I began this battle, but I like the term "stubborn" better. This disease is not something one inspires to but responds to...the better YOUR response, the better the outcome.
Good Luck and God Bless All that are fighting this war.
Tommy

whipsnade · New User Joined: 30 Aug 2007 Posts: 8 Location: socal

tom, you are "bad to the bone", a true WARRIOR! after reading your story, i found my keyboard a little damp. i know some of your trepadations and can relate to enjoying life even more. after whats been happening to me, i found that i have been sort of "blind". i think you know what i mean. i also have a "therapy" car, pantera. what kind of stang do you have? if i am too nosy just ignore the question. i wish you all the best and will keep you in my prayers. i will never stop "living" or fighting. and hope you do the same.
_________________
stage 2 colorectal/diag march 2007/post chemo-radiotherpy

milliesmom · Regular Joined: 18 Mar 2008 Posts: 34

My brother who had esophageal cancer also had a therapy car. it is a studebaker pickup. I think it about 1949, but I don't know anything about cars.

He also target shoots so he daydreamed, just like he was inside his esophagus and "shot" the tumor all the time. He would also do this when he had chemo. As the chemo when through his veins, he would daydream that the chemo was the bullets killing the cancer.

That, and prayers and finding a surgeon who would do this type of surgery (they are hard to find) was what saved him. Oh the chemo and radiation too. But he thinks it was the prayers, guided imagery and surgery.

You are an inspiration to all of us.

Milliesmom

bluek · Posted: Sun May 04, 2008 12:04 am Post subject: In my Thoughts and Prayers,

Tom, You are an incredible person. You have such a great outlook on things. You hang in there.

You are in my thoughts and prayers. My the Lord lay his healing hands on you. Remember he is with you always.

I lost my husband to colon cancer three years age but he put up one amazing fight for fourteen months.

May the Lord bless and keep you.

bluek

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