Pancreatic Cancer - a life changing event
hi all;
First of all, pardon my humor, it is my defense mechanism. I have to laugh and I try to find the humor in everything, including this....situation.
Now on with it........
I am on an adventure. I was diagnosed at the end of July 2014 with Stage 4 Pancreatic cancer. Needless to say I was not expecting this. I even told my doctor I would have been equally imressed with a diagnosis of galstones. After meeting with the pancreatic specialists, surical branch, for a day of testing, pocking and scanning, thy broke the news to my wife and myself. Very clinical, no hope given, stage 4 so they surgeons, could not help me. It had spread to the lungs. My wife and I bow our head and huddle, crying a little, and see the "team" all heading for the door for a quick exit. It struck me as ludicris at the time. The scene resembled the keystone cops; All trying to get through the door at the same time, or each wanting to be the first out of an uncomfortable situation. Hilarious really, if it were not so traumatising for the two of us staying in the room. A couple minutes later a nurse poked her head in the room and said my Oncologist would be here in about half an hour.
In the mean time, my wife I and I are reeling from the news. It is like have the rug pulled out frm under your feet. The Oncologist finally shows up. I urn to him and say, "Well that other team told me what we cant do. I need you to tell me what we can do." He laid out my prognosis. Not good, 4 to 6 months without any treatment. 12 to 14 months with treatment. There goes the rug again. Not being one to just give up I elected treatemnt. He disciussed how pancreatic cancer does not repond well to chemotherapy. This is after telling me chem was my only treatment option. He informed me that chemo is a delying tactic to buy more time. Personally I am cool with that. I want all the time I can get. Call me greedy........
Next we ar informed of a clinical trial for a new treatment for pancreatic cancer, but this treatment must be the first treatment a patient tries. I said fine lets go for it. A month of testing and many delays later we opted to forgo the clincal trial and try regular chemo. Fulfirinox was first. I had 4 rounds of the flavor of chemo. It really screwed up my lungs. I was coughing up blood and had to go on oxygen. Really ws no fun but we managed. No matter how bad it got, I figured it could be worse. My doctor ordered tests to reevaluate me, blood work up and CT. The results were not good. Thy nodules in my lungs had spread and grown and I had new spots in my liver now.
With this newswe decided to stop the fulfirinox and switch to the only other chemo available for Pan cancer, GEM. Bring it on, give me the juice! I had 3 rounds of GEM and got tested and scanned again. Finally had a little good news, the cancer stopped spreading. Whoo Hoo! So I am continuing treatment and will get scanned again first week of March 2015. Hoping for more good news. Oh, I just passed the 6 month mark..........
Comments
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Have same defense mechanisim..It did me fine!
Masterdon,
Keep the humor going! It was one of the only things I was able to have control of back in 2008. The day the rug was pulled out from under my (and families) feet. My Dr.'s were a little less "Keystone" but, very blunt about my stage 3 pc. With a similar time stamp put on me. Then they told me my options and my odds. Then asked me to make the call. My response was "Odds are made to be broken!" My surgeon said, "That's a pretty possitive attitude!" My follow up was "I see the cancer as a bully that wants to take my lunch! He might well get the lunch but, I'm going to at least get the piece of cake!"
Humor got me through many,many hard times in my battle with pc. Although, sometimes, it was dark humor that caught some folks off guard. It was something I could control. The rest was up to the LORD and my Dr.s
Glad to hear the cancer has stopped spreading.
Best Wishes and Prayers to You and Yours,
Oneshot
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Interested in SurvivorsOneshot said:Have same defense mechanisim..It did me fine!
Masterdon,
Keep the humor going! It was one of the only things I was able to have control of back in 2008. The day the rug was pulled out from under my (and families) feet. My Dr.'s were a little less "Keystone" but, very blunt about my stage 3 pc. With a similar time stamp put on me. Then they told me my options and my odds. Then asked me to make the call. My response was "Odds are made to be broken!" My surgeon said, "That's a pretty possitive attitude!" My follow up was "I see the cancer as a bully that wants to take my lunch! He might well get the lunch but, I'm going to at least get the piece of cake!"
Humor got me through many,many hard times in my battle with pc. Although, sometimes, it was dark humor that caught some folks off guard. It was something I could control. The rest was up to the LORD and my Dr.s
Glad to hear the cancer has stopped spreading.
Best Wishes and Prayers to You and Yours,
Oneshot
Oneshot,
I was diagnosed with Pancreatic Ca June 2013. I was 50 years old. I have a 12 year old and a 20 year old; they were 11 and 18 at the time. My pancreatic ca was labeled non-resectible. It was encapsulated by a miracle and had not spread. It was on the tail. It did take my left adrenal gland, spleen and a little part of my diaphragm. After 8 Fulfurinox treatments, one major surgery, 28 radiation treatments, and 12 more bags of chemotherapy, I finished treatement September 2014. I am interested that you were diagnosed in 2008. You are still here. Congratulations and job well done! You are a miracle. You know that!
I am being closely watched and so far a year from surgery everything remains crystal clear and tumor markers are normal. While I am at peace and believe that if it returns, I plan on fighting to the end, there are times that I wonder if I will be here in 5 years. My oncologist believes God has spared me; my journey in this life is not done. And he does not say those things lightly, nor has he said not to worry, but he is very positive and encourages me to live my life to the fullest, with whatever it may bring. Do you ever feel completely 'out of the woods'?
Best wishes to you.
mtcImStillHere
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survivorship
Hello, Thank you for sharing your journey. Glad to hear you have family to walk with you. I too am on gemcitibine, but with abraxane as well - in third cycle. I am in a clinical trial at Johns Hopkins. I do not know where you live, but there are hot spots for clinical trials for metastatic pancreatic cancer, including a new vaccine that they are using. Words and recommendations are easy to put out there, but I know the fundamental choice is deciding what you are going to do when God grants you another day to wake up to and embrace with hope you freedom to choose the course of your day! Many Blessings, Chip
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survivorship
Wanted to add this 60 Minutes report on pancreatic cancer - there are two of them, please watch both. Blessings, Chip
http://www.cbsnews.com/news/the-billionaire-shaking-up-the-world-of-cancer/
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mtclmStillHere, I wish ImtcImStillHere said:Interested in Survivors
Oneshot,
I was diagnosed with Pancreatic Ca June 2013. I was 50 years old. I have a 12 year old and a 20 year old; they were 11 and 18 at the time. My pancreatic ca was labeled non-resectible. It was encapsulated by a miracle and had not spread. It was on the tail. It did take my left adrenal gland, spleen and a little part of my diaphragm. After 8 Fulfurinox treatments, one major surgery, 28 radiation treatments, and 12 more bags of chemotherapy, I finished treatement September 2014. I am interested that you were diagnosed in 2008. You are still here. Congratulations and job well done! You are a miracle. You know that!
I am being closely watched and so far a year from surgery everything remains crystal clear and tumor markers are normal. While I am at peace and believe that if it returns, I plan on fighting to the end, there are times that I wonder if I will be here in 5 years. My oncologist believes God has spared me; my journey in this life is not done. And he does not say those things lightly, nor has he said not to worry, but he is very positive and encourages me to live my life to the fullest, with whatever it may bring. Do you ever feel completely 'out of the woods'?
Best wishes to you.
mtcImStillHere
mtclmStillHere,
I wish I could take the congrats for a "Job well done". Truth be known. I give all credit to GOD! The LORD provided the doctors, and many others there for me.
I'm going to set this up so, you can see why I answer your question the way I do.
I was 48 when I was diagnosed. Luckily, my doctors were aggressive with my cancer. They removed 1/3 of my pancreas,1/3 my stomach, gall bladder,18" of small intestine and 17 lymph nodes Then told me "What's left of your pancreas looks like it's been in a pretty rough rodeo".
(all the rest of the info. you can find by clicking on my name under my picture or avatar).
After the final chemo (post Whipple). I was fixing to be able to get my scans spaced to every 6 mos. They found spots on my liver. Turned out to be just normal cysts people get as they get older. Needless to say scans still stayed at 3 mos. for a bit longer. Now days, I get scanned once a yr. and blood work done twice a yr. My body reminds me pretty often what I have gone though. But hey! A small price to pay for getting through it,. That's just the way I look at it! I don't think much about it coming back even on my really painful, "Gut wrenching" (for lack of a better term) days. But, about a week before a scan. I can see myself feeling like I have the "Sword of Damocles" hanging over me. I don't consciously think about it much. But it does seem to be in my subconscious mind. I say that due to a couple of things I have noticed. I can go to any other dr. office besides my oncologist's. My blood pressure is good. At my oncologist. They always say "It's a little high". My response to them is..."Put yourself in my shoes!" Then after my scan and getting back good results. I always feel exhilarated.
With that being said. I'm figuring I gave you a long winded answer. I don't ever see myself as "Out of the Woods" due to the type of cancer. Then, I tend to twist it into a positive view. Since I love the outdoors. I figure if I'm lost in the woods. I'll just look at and enjoy the trees, animals and such. With a lot more clarity ,till I'm out of the woods but, I won't dwell on being lost in them.
Hope that makes sense to someone else beside me!
Prayers and Well wishes for you and your family,
Oneshot
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Pancreatic cancer post on ....for new folksOneshot said:mtclmStillHere, I wish I
mtclmStillHere,
I wish I could take the congrats for a "Job well done". Truth be known. I give all credit to GOD! The LORD provided the doctors, and many others there for me.
I'm going to set this up so, you can see why I answer your question the way I do.
I was 48 when I was diagnosed. Luckily, my doctors were aggressive with my cancer. They removed 1/3 of my pancreas,1/3 my stomach, gall bladder,18" of small intestine and 17 lymph nodes Then told me "What's left of your pancreas looks like it's been in a pretty rough rodeo".
(all the rest of the info. you can find by clicking on my name under my picture or avatar).
After the final chemo (post Whipple). I was fixing to be able to get my scans spaced to every 6 mos. They found spots on my liver. Turned out to be just normal cysts people get as they get older. Needless to say scans still stayed at 3 mos. for a bit longer. Now days, I get scanned once a yr. and blood work done twice a yr. My body reminds me pretty often what I have gone though. But hey! A small price to pay for getting through it,. That's just the way I look at it! I don't think much about it coming back even on my really painful, "Gut wrenching" (for lack of a better term) days. But, about a week before a scan. I can see myself feeling like I have the "Sword of Damocles" hanging over me. I don't consciously think about it much. But it does seem to be in my subconscious mind. I say that due to a couple of things I have noticed. I can go to any other dr. office besides my oncologist's. My blood pressure is good. At my oncologist. They always say "It's a little high". My response to them is..."Put yourself in my shoes!" Then after my scan and getting back good results. I always feel exhilarated.
With that being said. I'm figuring I gave you a long winded answer. I don't ever see myself as "Out of the Woods" due to the type of cancer. Then, I tend to twist it into a positive view. Since I love the outdoors. I figure if I'm lost in the woods. I'll just look at and enjoy the trees, animals and such. With a lot more clarity ,till I'm out of the woods but, I won't dwell on being lost in them.
Hope that makes sense to someone else beside me!
Prayers and Well wishes for you and your family,
Oneshot
Jan 31, 2015 - 12:37 amPosted this as a new thread for pancreatic cancer for 2015. I know when I was new on here and trying to navigate the boards to find anything on Pancreatic Cancer , while going through treatments. I had a little trouble finding a post on Pancreatic Cancers . Even after finally figuring it was under Rare and other Cancers. If nobody posts for a while . The subject falls to the back pages after a bit.
For those that are new to this board and lucky enough to have looked into the Rare and Other Cancers and find this post. You can start here with a post or if you want you can click on the pages at the bottom and scroll through. There are some good discusions on older posts . (for those of you who are new.)
Wishing All of You The Best,
Oneshot
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New caregiver to mother with PCOneshot said:Pancreatic cancer post on ....for new folks
Jan 31, 2015 - 12:37 amPosted this as a new thread for pancreatic cancer for 2015. I know when I was new on here and trying to navigate the boards to find anything on Pancreatic Cancer , while going through treatments. I had a little trouble finding a post on Pancreatic Cancers . Even after finally figuring it was under Rare and other Cancers. If nobody posts for a while . The subject falls to the back pages after a bit.
For those that are new to this board and lucky enough to have looked into the Rare and Other Cancers and find this post. You can start here with a post or if you want you can click on the pages at the bottom and scroll through. There are some good discusions on older posts . (for those of you who are new.)
Wishing All of You The Best,
Oneshot
My mother was diagnosed with pancreatic cancer on 1-27-15. So far, no doctor has actually given it a stage, but based on my reading, it seems like a stage II. It is about 4cm, just in the head of the pancreas and considered resectable. She had a consult with a surgical oncologist who wanted her to do 4 rounds of chemo, to see if she can handle it and if the tumor will shrink. She had her first round of chemo on 2-17. I can't recall what all was in the cocktail (all the info is in a folder at her house), but know 5FU was given via pump over 44 hours. She did well for the two days she was on the pump, but then started having extreme diarrhea on the third day and ended up in the hospital on 2-22 and is still there. Despite anti-nausea meds and pain meds, she is still in great pain, plus diarrhea and vomiting. She has also been diagnosed with c-diff.
I am unsure where we go from here...does her reaction mean she can't handle chemo or is this normal? What can be done for her pain (on 75mg fentynal patches, 5mg oxycodone, and 500mg naproxen, when at home). She has told us the pain is so bad she just wants to die and another time she said she couldn't take anymore, so we took her to ER for pain meds. She is usually a strong person who has been healthy all her life (she is 71).
What can I expect going forward? Is this just bumps in the road of fighting PC? Any suggestions what pain meds or comfort measures might work better for her at home? I can handle all her daily care, but not being able to help with pain is quite upsetting.
Thanks!
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some infoJamie_in_mi said:New caregiver to mother with PC
My mother was diagnosed with pancreatic cancer on 1-27-15. So far, no doctor has actually given it a stage, but based on my reading, it seems like a stage II. It is about 4cm, just in the head of the pancreas and considered resectable. She had a consult with a surgical oncologist who wanted her to do 4 rounds of chemo, to see if she can handle it and if the tumor will shrink. She had her first round of chemo on 2-17. I can't recall what all was in the cocktail (all the info is in a folder at her house), but know 5FU was given via pump over 44 hours. She did well for the two days she was on the pump, but then started having extreme diarrhea on the third day and ended up in the hospital on 2-22 and is still there. Despite anti-nausea meds and pain meds, she is still in great pain, plus diarrhea and vomiting. She has also been diagnosed with c-diff.
I am unsure where we go from here...does her reaction mean she can't handle chemo or is this normal? What can be done for her pain (on 75mg fentynal patches, 5mg oxycodone, and 500mg naproxen, when at home). She has told us the pain is so bad she just wants to die and another time she said she couldn't take anymore, so we took her to ER for pain meds. She is usually a strong person who has been healthy all her life (she is 71).
What can I expect going forward? Is this just bumps in the road of fighting PC? Any suggestions what pain meds or comfort measures might work better for her at home? I can handle all her daily care, but not being able to help with pain is quite upsetting.
Thanks!
Jamie,
You might look at the site PanCan.org . It has good information and folks that can assist caregivers . If I remember correctly. They have folks you can talk directly to by phone also.
As far as the pain and diarrhea. Well, Just having PC can be a cause of those two. Chemo (and radiation ,if she takes it) is no walk in the park for most of us either. The first couple of times were the worst for me! Then they installed a port on me, to receive chemo through. Chemo was still rough on the body but the port seemed to make it easier on my veins. Make sure and keep notes on any and all pains or other symptoms your mom might show and tell you about or that you notice. With all that you and her will be going through. It will be hard to remember all the details if you don't. Then when you see the doctor(s) make sure you have them(notes) with you to show them. Even if she is in the hospital!
Also make sure they set her up with a dietitian. They are a great help. I eat fine now but, I couldn't keep anything down that I tried to eat, for months. I had to have a feeding tube (J-tube) installed just to keep weight on me. Not everyone has to go that route. Just want you to know there is that option.
Keeping you and your family in my prayers,
Oneshot
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How are things going?
Masterdon- You started the GEM and the cancer haulted. How are things now? I hope you are continuing to get good news.
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Just checking inmtcImStillHere said:Interested in Survivors
Oneshot,
I was diagnosed with Pancreatic Ca June 2013. I was 50 years old. I have a 12 year old and a 20 year old; they were 11 and 18 at the time. My pancreatic ca was labeled non-resectible. It was encapsulated by a miracle and had not spread. It was on the tail. It did take my left adrenal gland, spleen and a little part of my diaphragm. After 8 Fulfurinox treatments, one major surgery, 28 radiation treatments, and 12 more bags of chemotherapy, I finished treatement September 2014. I am interested that you were diagnosed in 2008. You are still here. Congratulations and job well done! You are a miracle. You know that!
I am being closely watched and so far a year from surgery everything remains crystal clear and tumor markers are normal. While I am at peace and believe that if it returns, I plan on fighting to the end, there are times that I wonder if I will be here in 5 years. My oncologist believes God has spared me; my journey in this life is not done. And he does not say those things lightly, nor has he said not to worry, but he is very positive and encourages me to live my life to the fullest, with whatever it may bring. Do you ever feel completely 'out of the woods'?
Best wishes to you.
mtcImStillHere
mtclmStillHere,
Was checking in. In hopes you had posted some more good results!
Wishing you and your family the best,
Oneshot
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Pancreatic cancer with mets
My husband was having pain and numbness in the balls of his feet, extreme back pain and some abdominal discomfort with weight loss - the last two months losing 1 pound every two days without trying. He then went on Norco and had extreme constipation. He had been complaining to his doctor for several month of his symptoms and all that she gave him was laxatives. Please if you have any abdominal /back pain & weight loss have the doctor do a abdominal ultrasound and a cancer workup. His doctor completely disregarded his stymptoms and did NOTHING when he could of had treatment for his pancreatic cancer before it spread to his liver and lungs. I demanded an ultrasound of his aorta since he also had a small anerism. Why in God's name didn't she just have his abdomen checked out while they were checking his abdominal aorta. This was back in February 2015. He went into the hospital (ER) on 5-11-15 and they just had him do an enema (gave him an abdominal x-ray) and sent him home. On 5-19-15 he told me he was feeling so week that he needed to go back to the ER. I was out of town and he drove himself. A CT Scan was done, biopsy results on 5-23-15 showed pancreatic cancer with mets. Then a few days later he gets aspiration pneumonia - then C-diff, and then they sent him home and within a day and a half he needed to go back to the hospital - he had a blood clot in his lung that was not there the week before. They put him on life-support - he wamted it out, he lasted about an hour after the ventilator was removed. This all happened within 3 weeks after being diagnosed. It has been a real nightmare. I am so depressed and sad and so mad at this doctor who completely missed all of his symptoms.
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So sorryJulie2015 said:Pancreatic cancer with mets
My husband was having pain and numbness in the balls of his feet, extreme back pain and some abdominal discomfort with weight loss - the last two months losing 1 pound every two days without trying. He then went on Norco and had extreme constipation. He had been complaining to his doctor for several month of his symptoms and all that she gave him was laxatives. Please if you have any abdominal /back pain & weight loss have the doctor do a abdominal ultrasound and a cancer workup. His doctor completely disregarded his stymptoms and did NOTHING when he could of had treatment for his pancreatic cancer before it spread to his liver and lungs. I demanded an ultrasound of his aorta since he also had a small anerism. Why in God's name didn't she just have his abdomen checked out while they were checking his abdominal aorta. This was back in February 2015. He went into the hospital (ER) on 5-11-15 and they just had him do an enema (gave him an abdominal x-ray) and sent him home. On 5-19-15 he told me he was feeling so week that he needed to go back to the ER. I was out of town and he drove himself. A CT Scan was done, biopsy results on 5-23-15 showed pancreatic cancer with mets. Then a few days later he gets aspiration pneumonia - then C-diff, and then they sent him home and within a day and a half he needed to go back to the hospital - he had a blood clot in his lung that was not there the week before. They put him on life-support - he wamted it out, he lasted about an hour after the ventilator was removed. This all happened within 3 weeks after being diagnosed. It has been a real nightmare. I am so depressed and sad and so mad at this doctor who completely missed all of his symptoms.
Julie2915
My heart goes out to you.
Please know we are all praying for your loss. Sometimes doctors do not know what they are doing.
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questionfor efdb50efdb50 said:survivorship
Hello, Thank you for sharing your journey. Glad to hear you have family to walk with you. I too am on gemcitibine, but with abraxane as well - in third cycle. I am in a clinical trial at Johns Hopkins. I do not know where you live, but there are hot spots for clinical trials for metastatic pancreatic cancer, including a new vaccine that they are using. Words and recommendations are easy to put out there, but I know the fundamental choice is deciding what you are going to do when God grants you another day to wake up to and embrace with hope you freedom to choose the course of your day! Many Blessings, Chip
I am just starting the jouney and want to know as much as I can about it.
I have been diagnosed with IPMN precancerous or cancerous cysts on the head of the pancreas, a growth in the bile duct, distended gall bladder with sludge, cyst on kidney and thickening of the stomach lining - all by accident after an MRI abdominal pain. I am not a candidate for a Whipple as I am only 108 lbs and 77 years old.
What can I expect as my doctor has yet to get me an appointment at Mass General Hospital. I am not even sure that is where I should be going at this point. The other hospital in MA is Brigham and Womens/Dana Farber. Should I get opinions from both of them before starting any treatment? I have read on other cancer sites that even if you have the Whipple and the cancer is removed (and your life is hell after) not too long after you grow new IPMN cysts on what is left of the pancreas so what is the point. I have many other health issues that are serious but livable with but scared stiff of this one.
Please let me know what I am in for. Thank you
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hope all is still goodmtcImStillHere said:Interested in Survivors
Oneshot,
I was diagnosed with Pancreatic Ca June 2013. I was 50 years old. I have a 12 year old and a 20 year old; they were 11 and 18 at the time. My pancreatic ca was labeled non-resectible. It was encapsulated by a miracle and had not spread. It was on the tail. It did take my left adrenal gland, spleen and a little part of my diaphragm. After 8 Fulfurinox treatments, one major surgery, 28 radiation treatments, and 12 more bags of chemotherapy, I finished treatement September 2014. I am interested that you were diagnosed in 2008. You are still here. Congratulations and job well done! You are a miracle. You know that!
I am being closely watched and so far a year from surgery everything remains crystal clear and tumor markers are normal. While I am at peace and believe that if it returns, I plan on fighting to the end, there are times that I wonder if I will be here in 5 years. My oncologist believes God has spared me; my journey in this life is not done. And he does not say those things lightly, nor has he said not to worry, but he is very positive and encourages me to live my life to the fullest, with whatever it may bring. Do you ever feel completely 'out of the woods'?
Best wishes to you.
mtcImStillHere
never give up, i had my whipple surgery dec. 2009 and i'm on my 5 1/2 year, it takes alot of praying, faith and believing...mine was stage 4 and i no how it is going through all the chemo and stuff, its a long hard road but never give up the fight.. you never feel completely out of the woods, i only get a pet-scan every year now and i worry till i have it, my doctor told me i shouldnt be here but i believe god has plans for me. well anyway i hope everything is still going good for you...god bless..
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Congrats Rebelwhg1rebelwhg1 said:hope all is still good
never give up, i had my whipple surgery dec. 2009 and i'm on my 5 1/2 year, it takes alot of praying, faith and believing...mine was stage 4 and i no how it is going through all the chemo and stuff, its a long hard road but never give up the fight.. you never feel completely out of the woods, i only get a pet-scan every year now and i worry till i have it, my doctor told me i shouldnt be here but i believe god has plans for me. well anyway i hope everything is still going good for you...god bless..
Rebelwhg1,
Just wanted to say congradulations on the 5-1/2 yr. mark! I like your choice of shirt also. Thanks for what you do with the Patriot Guard!
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thank you OneshotOneshot said:Congrats Rebelwhg1
Rebelwhg1,
Just wanted to say congradulations on the 5-1/2 yr. mark! I like your choice of shirt also. Thanks for what you do with the Patriot Guard!
even tho i'm over the 5 year mark i still worry from scan to scan.. i'm a smoker and that even worries me more, i no i should quit but i really dont want to as i enjoy it, started back to smoking again on the way home after my whipple. i still have some problems since my cancer which one problem is getting dizzy alot mostly when laying flat, had all kind of tests for it but no doctor can figure out what causes it.. but anyway thank you Oneshot for your comments and yes being a patriot guard rider is one thing i live for.. i will always stand for those who stood for us.. be going friday to escort the wall into west virginia.. you have a good day and god bless..
0
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