reaching for the stars (my story)

good morning'
my name is ed'
was diagnosed back in november of 07 stage iv colon cancer that spread to paritineal lining, liver and esophagus. initial symptoms that i can remember started in december of 06. nausea, sweating at night and an extreme amount of pain that started in my lower back. it took me almost a year to be diagnosed. everytime i went to ER *8times* all the doctors would say is how good of shape i was in. you see, i also have esrd *kidney failure* and i keep myself in very good shape (excercise eat well etc..) and noone could understand. when finally diagnosed went immediately to surgery where the surgeon discovers how advanced the cancer was and couldn't remove the tumor. came out of surgery with no cancer removed and a discovery of how advanced with a very grim outlook from all those involved professionally. even had to have a colostomy. i was given 30 days without treatment and 6 months with. matter of fact the surgeon said to me on a follow up visit "make an appointment with my staff and if it's meant to be i'll see you in 6 months." i've always lived my life that what tools/gifts God has given you, use them to their fullest and never ever give up on 'anything.' well, the prognosis given to me was striking and all the drs. were hessitant on how or what to treat me with given the other obstacle (kidney failure.) at this point i picked up the phone and called MayoClinic. i pretty much piched them to use me as a study case and if all works out or doesn't maybe we can at least extend life for those with my type of cancer along with kidney failure. well, here i am august 31 08 and two weeks ago was told "we cannot see any cancer whatsoever and were going to schedule you with our surgeon to reconstruct and verify no cancer." wow! i was shocked! i was treated with fluorouracil, leucovorin and oxaliplatin. the reason i'm writing about this is """to never ever give up."""" if anyone cares to ask me anything and or share there story you can always reach me at tqm1ed@aol.com

ed

By li47
Posted September 1, 2008 at 12:43 pm
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Hi Ed,
Thank you for sharing your amazing story!
My diagnostic was never like that, I had surgery,radiation and now I´m on hormone- therapy,but I had two recurrence along the way and when I think that it might return.. I don´t know..some times I belive that I´ll give it up.That is why I loved to read your post telling us never to give up,showing us that we have to have hope.
thankyou
Li

By Chemo2
Posted September 2, 2008 at 11:01 am
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Hey Ed, Thought I was young when I was diagnosed with cc. You have me beat at 42! I was stage three and am three years cancer free. I often think that if it returns, I would just allow it to take its course. But hearing your story gives me hope that I can fight it again and win. Continue to share your story, it helps others and always push others for early screening. Best of luck to you and keep us updated.

Bob

By cindybear
Posted September 3, 2008 at 12:35 am
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Great News Ed I love hearing stories like yours as gives us so much hope and the strength to continue the fight. I am currently in remission from Stage IIb HER2 +++ BC finished chemo/rad 2 years ago and often wondered what I would do if I had a reoccurrence but after reading your story I now know I would continue the fight.
Congradulations
Cindybear

By tig
Posted September 3, 2008 at 9:34 am
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I have battled cancer 2 times in past 5 1/2 years and with god and prayer and family and wonderful caring doctors we can beat it. I pray i can be as strong as you. I tell many i am but i am so angry trying to live with the new me, but with so many others like you i know i can get over it and succeed with doing what i always want to do, write my book about cancer , and live 1 day at a time telling all those i love including god how much i love them. God bless you always! sincerely tig

By devo
Posted December 3, 2008 at 5:51 pm
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Thanks Ed for posting your story. Its great that you are having such success.

I was interested in the fact that it took a year to get diagnosed. I'm going through that same thing. I don't know yet if I have cancer but I do have a lesion/tumor/polyp in my stomach that measures about 2.2 cm and is near the esophagus. This was found during an endoscopy/colonoscopy because the "lesion" showed up in a CT scan I had to find out the source of pain in my lower right abdomen. I've had every other type of test available too and an MRI revealed a herniated L4 and a tear at L5 and the doctor said it was "degenerative disease". So, the lesion/tumor/polyp was incidental. The gastro who did the endoscopy couldn't take a biopsy of it so he referred me to another guy who is going to do an endoscopic ultrasound. Its not scheduled for another 2 1/2 weeks. This took a long time. My pain started in January this year (2008) and so far all I know for sure is that my back is probably causing most of it.

Here's the funny part: now, my upper abdomen is starting to ache, particularly after I eat, and its starting to hurt in the same spot but in my back. I think this could be my pancreas and I'm imagining that I do have gastric cancer and/or pancreatic cancer. I'm not usually a hypochondriac and I'm usually in good health - usually.

I'm going crazy waiting to find out what this lesion/tumor/polyp is and or contains and I've done a lot of research. I'm scared and lost, and I feel very alone because my family doesn't believe I have cancer.

Seeing that you and others have gone through similar experiences and that you've been successful is helping me to stay hopeful and strong through the waiting. I would like to say that its probably not cancer, but something tells me it is. I can't stop worrying about it and in my prayers I've asked God to give me peace, whatever happens.

So, thanks again and keep the force in your sight.
Devo

By norskerebel
Posted December 20, 2008 at 12:54 am
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I had many symptoms for months and when I finally went to the Dr in May of '06, I was diagnosed with Stage IV anal/rectal cancer. It had grown around my ureter and to my pelvic bone. I had mets all over my liver. They said I was terminal, but put a plan in to action right away, begining with a colostomy. Radiation and chemo for month after month. I wasn't afraid to die, but I didn't want to. I have things to do and a husband who needs me. As of last week, the most recent biopsy they did of my liver says there is a cavernous hemangioma. Basically a benign blob. That's all they got. I'll be going back in May for another CT, but until then I consider myself healed and so does my disbelieving oncologist. I know I will always have the fear in the back of my mind that it will come back or that it is lurking somewhere, but for now, I feel great, I'm off chemo and my life goes on as it is supposed to. I give all of the credit to God and all of the people who prayed for me. When my time comes to leave this life I will know and I won't fight it. That time is not going to come for a long, long time. Believe in miracles. They really do happen.

By tqm1ed
Posted December 26, 2008 at 6:49 am
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i felt compelled to write the following...

{my symptoms for nearly one year. it started out in December of 07. very nauseous, night sweats, and overall flu like symptoms. within 30 days started developing pain lower back and this went on for a little over a couple of months. i'm not the type of person whom complains about pain but the pain was so bad i even asked my Mom for some of her pain medication. it was probably mid February of 08 i began going to ER's. i attempted the same ER probably 4 times thinking they had some kind of record that may help me but i soon learned i still wasn't going to get diagnosed. i attempted 4 other ER's with still no luck. pain now was emanating from right lower quadrant and right shoulder. my pain in my lower back was no longer there. also in the interim of ER visits i went to a Dr. referred by my dialysis unit Nurse. he evaluated me quite thoroughly and i'm thinking finally someone who may get to the root of the problem. this Dr. told me he was going to schedule a slew of testing with specialist after getting some blood results back. i called after a few weeks and discovered he completely dropped the ball. to this point i've had MRI, CAT, ULTRASHOUND, XRAY, BLOOD TEST, ETC.. all performed out of ER visits. still no conclusion. finally my Cousin thought i should see her Primary Dr. something i've heard from every Dr. i sought was how healthy i appeared but in taking the laundry list of visits and results this particular Dr was taking me seriously. i ended up being referred for a colonoscopy/endoscopy, which by the way was referred before by an ER Dr. and when showed up for that appointment that particular Dr thought and said to me it wasn't necessary and wondered why i was even there. well, finally had this procedure done and low and behold a mass which was sampled had been noticed. this mass was so large it couldn't be breached and further up the colon was still a mystery. somehow i knew before and after this procedure being performed that i had something serious and finally after getting test results was told i had colon cancer and then referred for another CAT but this time with dye. cancer now was determined to have spread to my abdomen, liver and esophagus. Stage IV. was referred now to an oncologist who got me to a colorectal surgeon and went to surgery end of November 07. surgeon opened me up only to find out this tumor could not be removed and a colostomy was placed. by the way, i just hated the colostomy. went back to oncologist and was told to get my affairs in order that without treatment would have about 30 days and with maybe 6 months. he wasn't even sure how he was going to treat me because i have ESRD ie kidney failure. i'm on the transplant list at Mayo Clinic so i picked up the phone called them and asked if i could visit there oncologist team. one of the most important calls i ever made. after a few routine tests and visits they accepted me as a client and in later February of 08 chemotherapy started. chemotherapy i tolerated very well. never took any medications, hair didn't fall out etc.. the oncologist team at Mayo Clinic very surprised how well i was doing and each test performed throughout treatment proved Chemotherapy was working with proof the tumor and all subsequent lesions were shrinking and responding to therapy. end of September of 08 was told CAT scan revealed no tumor no lesions. Wow!!! i was speechless. i was so focused on beating this and to actually hear them words i just didn't know what to say but "Thank you." at this time was now scheduled to see a surgeon again so they could go in and visually confirm no cancer and remove surgically if noticed and of course reverse the colostomy. i am now cancer free after a lengthy hospital stay and some subsequent battles that have put me in hospital for shorter visits.
my reasoning for sharing this is too that GOD does work miracles and the experience of cancer has done nothing but instill in me what i've already believed. of course there so much more to share that basically enforces this and i would have never needed any more 'proof' but sharing this experience with others i hope brings strength for those in need.

Radiation and chemo for month after month. I wasn't afraid to die, but I didn't want to. I have things to do and a husband who needs me. As of last week, the most recent biopsy they did of my liver says there is a cavernous hemangioma. Basically a benign blob. That's all they got. I'll be going back in May for another CT, but until then I consider myself healed and so does my disbelieving oncologist. I know I will always have the fear in the back of my mind that it will come back or that it is lurking somewhere, but for now, I feel great, I'm off chemo and my life goes on as it is supposed to. I give all of the credit to God and all of the people who prayed for me. When my time comes to leave this life I will know and I won't fight it. That time is not going to come for a long, long time. Believe in miracles. They really do happen.


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By BJsmom
Posted November 14, 2009 at 10:50 pm
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My son was recently diagnosed with bone cancer. I have been angry with the disease, with his medical staff, with the lack of support ect. But hearing your story Ed makes me grateful for my son's treatment and that I still have him here with me. God Bless You and thank you for sharing. BJS mom

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