Anyone have radiation for Colon Cancer? What are side effects

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pluckey
pluckey Member Posts: 484 Member
edited March 2014 in Colorectal Cancer #1
I will be having radiation . I'm scared to death. Will I hae nasty sores and pain in my butt from it? Will it radically effect my everyday life- Walking, Sitting, laying etc???

I am really scared. I will be having my ileostomy reversed next week and I understand there's alot of diarreah and accidents post-reversal. So having a sore bum from contant pooping, PLUS radiation effects make me so scared.

Any advice appreciated!!!

Peggy

Comments

  • PGLGreg
    PGLGreg Member Posts: 731
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    It might not be that bad.
    I had 6 5-day weeks of radiation in 2006 after an LAR for rectal cancer. I didn't have any big problem with it -- I was working, and I drove over to the hospital around lunch time for the radiation, then returned to work. I did have diarrhea starting the 2nd or 3rd week, but once I started taking Lomotil, it suppressed the diarrhea very well. I never had any accidents, and it didn't interfere with my life. I had a lot of excess rectal gas, and some pain from frequent wiping, so there were times that I was uncomfortable. However, your mileage may vary. There are substantial differences in the radiation patterns they use, I gather, from case to case, and in how much collateral damage they must cause to tissues in the neighborhood of the area they need to irradiate. Also, from reading other postings here, I've learned that women sometimes encounter special problems.

    --Greg
  • Buzzard
    Buzzard Member Posts: 3,043 Member
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    PGLGreg said:

    It might not be that bad.
    I had 6 5-day weeks of radiation in 2006 after an LAR for rectal cancer. I didn't have any big problem with it -- I was working, and I drove over to the hospital around lunch time for the radiation, then returned to work. I did have diarrhea starting the 2nd or 3rd week, but once I started taking Lomotil, it suppressed the diarrhea very well. I never had any accidents, and it didn't interfere with my life. I had a lot of excess rectal gas, and some pain from frequent wiping, so there were times that I was uncomfortable. However, your mileage may vary. There are substantial differences in the radiation patterns they use, I gather, from case to case, and in how much collateral damage they must cause to tissues in the neighborhood of the area they need to irradiate. Also, from reading other postings here, I've learned that women sometimes encounter special problems.

    --Greg

    Radiation and my experience
    OK, lets see, I had 5 weeks of 5 day a week radiation. It took me approx 15 minutes from the time I got there until I was walking out the door going back home....If you have children and you take them to school or get them ready then try to manipulate your radiation to suit your schedule. The time spent in rad treatment is very minimal so try and get it set up to where it interferes the least with your day....Next, for me it wasn't to bad, a little diarrhea that immodium took pretty good care of, and for sure, "AQUAPHOR". You can get this from your radiation dept for free...It is to ease the "sunburn" you might get where the sun don't usually shine...That happened to me on about the 3rd-4th week, you'll know when to start using it, trust me, you'll know...and please above all DO NOT EAT ANY TYPE OF NUT PRODUCTS ...trust me, they will cut your tail up like shards of glass. You have to understand that the radiation will make your insides raw so be kind of careful what passes through them for a little while...
    I will let the women go into the other details about what it may do and how to take care of it....I'm thinking Dryness, some loss of libido, some menopausal symptoms etc...OK sorry, Im getting out of my league here........Help Ladies !!!
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
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    Hi Peggy,my husband finished
    Hi Peggy,my husband finished radiation three weeks ago.The First one or two weeks,it didn't bother him much,but with time,he started to have diarrhea at the beginning of the 3rd or the 4th week.And the more it goes,the more tender he felt inside of his rectum.Actually the diarrhea wasn't too bad and it was under control because my husband took medication from the counter and followed the dietian's diet.You should know that you are going to feel worst when it finishes, and before it gets better, it can be worse because even if you stop radiation,it will still continue to work inside of the rectum for two or three weeks.Yes,my hubby felt pretty tender on his butt,so I put a couple of more cushions on his chair at home and a couple of cushions on his car,and this helped.He also took a warm bath in the bathtub every night before go to bed.This also helped.Don't be too afraid if you have to take it,actually it is bearable,not as bad as imagination.You can always do something to control the side effects,and the nurses will tell you many tricks to cope with the side effects.Good luck to you with your treatment.
  • karguy
    karguy Member Posts: 1,020 Member
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    Radiation
    I did 6 weeks of radiation last year just before surgery,and I had to go to the bathroom alot,but very seldom diarea.I was given some medication to help with the soreness,and took 1 imodium a day that helped with the cramps that I had the last few weeks.I got a kind of burn but it wasn't too bad.But the radiation made me sterile.I have a permanant colostomy so I can't really say about post-reversal.I didn't have any sores,I did chemo at the same time,and really only had the bad cramps.Good luck!!!!
  • kristasplace
    kristasplace Member Posts: 957 Member
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    Effects of radiation
    Hello Peggy! I'm a little reluctant to respond to this post because i don't want to cause you any panic. I will tell you my experience (which isn't neccesarily going to be yours)!

    I had 30 treatments of radiation two years ago, and it has caused me significant problems. The first thing i would do is talk to your radiation oncologist about medications that could save your bones during radiation. I developed severe osteoporosis and soft/brittle bones especially in the exact location of the radiation. I get fractures all the time in my sacrum, and spine. I got radiation cystitis where crystals and dead white blood cells formed to block my urethra. I still have it, but it's not as bad as it was (smaller bladder, leakage, and some burning). I don't know if they've told you yet, but the radiation will sterilize you. I went into menopause as soon as the radiation started. No more periods...YAY! The only side effects i've had from that is hot flashes. Those aren't any fun, but it could be much worse! Since i've never had children, they offered to move my ovaries out of the way of the radiation, but i opted out of that one.

    I've been told by several doctors that the damage to my bones is rare. I've met several other people on this site that it's happened to, but not too many. It's the cystitis i would watch out for the most. As soon as you realize you're not peeing, but feel like you have to, call your doc.

    Everyone is different. I didn't have anything the guys above mentioned except for fatigue.

    Hang in there! The radiation completely annhilated my tumor, so it really was worth it. If i'd known then what i know now, i would've asked for the fossamax. Hindsight is beautiful!

    Let us know how your first zapping goes!

    Hugs,
    Krista
  • mommyof2kds
    mommyof2kds Member Posts: 519
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    Effects of radiation
    Hello Peggy! I'm a little reluctant to respond to this post because i don't want to cause you any panic. I will tell you my experience (which isn't neccesarily going to be yours)!

    I had 30 treatments of radiation two years ago, and it has caused me significant problems. The first thing i would do is talk to your radiation oncologist about medications that could save your bones during radiation. I developed severe osteoporosis and soft/brittle bones especially in the exact location of the radiation. I get fractures all the time in my sacrum, and spine. I got radiation cystitis where crystals and dead white blood cells formed to block my urethra. I still have it, but it's not as bad as it was (smaller bladder, leakage, and some burning). I don't know if they've told you yet, but the radiation will sterilize you. I went into menopause as soon as the radiation started. No more periods...YAY! The only side effects i've had from that is hot flashes. Those aren't any fun, but it could be much worse! Since i've never had children, they offered to move my ovaries out of the way of the radiation, but i opted out of that one.

    I've been told by several doctors that the damage to my bones is rare. I've met several other people on this site that it's happened to, but not too many. It's the cystitis i would watch out for the most. As soon as you realize you're not peeing, but feel like you have to, call your doc.

    Everyone is different. I didn't have anything the guys above mentioned except for fatigue.

    Hang in there! The radiation completely annhilated my tumor, so it really was worth it. If i'd known then what i know now, i would've asked for the fossamax. Hindsight is beautiful!

    Let us know how your first zapping goes!

    Hugs,
    Krista

    Hi Peggy, my biggest side
    Hi Peggy, my biggest side effect was fatigue, all I wanted to do was sleep. You may not notice any side effects for the first few weeks. The peak isn't even reached until the radiation is finished about 3-5 days after it is completed. I have 28 radiation treatments. I didn't suffer to many side effects. I did have some soreness in the groin area, the radiation clinic gave me some gel to use to help with that. Use only mild soap like dove unscented. wear non-restictive clothing, not tight or too fitting, that may irritate the skin that is already irritated. Radiation may put you into menopause, cause vaginal dryness and cause narrowing of the vagina. I was given vaginal dilators from the clinic when my radiation was finished because that causes alot of issues with some woman after treatment for their sex life. I didn't have any issues with it.. Hope this info helps.. Take care. Petrina
  • pluckey
    pluckey Member Posts: 484 Member
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    thanks all for your input
    I've already gone thru menopause at 43, so hopefully nothing to worry about there.

    What is Fossomax?

    I've already had the colon tumor removed in march. the Dr wants radiation as a preventavie, make sure no reoccurance.

    I have to live thru the ileostomy reversal 1st, then Radiation, then liver resection (mets to liver) I have a feeling the rest of 2009 will be challenging!
  • kristasplace
    kristasplace Member Posts: 957 Member
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    pluckey said:

    thanks all for your input
    I've already gone thru menopause at 43, so hopefully nothing to worry about there.

    What is Fossomax?

    I've already had the colon tumor removed in march. the Dr wants radiation as a preventavie, make sure no reoccurance.

    I have to live thru the ileostomy reversal 1st, then Radiation, then liver resection (mets to liver) I have a feeling the rest of 2009 will be challenging!

    Fossamax...
    Hi Peggy! Fossamax is an osteoporosis medication. It keeps the body from losing bone, and in some patients can actually reverse some bone loss. It especially works well with high doses of calcium. They have me on 1500 mg per day with 800 of vitamin D. You may be fine if you take the calcium/D supplement, but i would definitely discuss it with your rad onc. Especially since you've already gone through menopause.

    I didn't know they did preventive radiation for cc. I've heard of it done for breast cancer, though. Did they give you this as an option to do instead of the folfox 6? Are they putting you on the 5fu pump while you're doing radiation? Are they recommending radiation because your margins were not clear?

    Sorry for all the questions! The treatments are always changing, and since i'm nearly positive i have a recurrence, i'm exploring options. Though i can't ever receive radiation in that area again, thank God!!! One more question: when is your takedown?

    Many hugs,
    Krista
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    My story with radiation
    Hi Peggy

    I seem to differentiate with my treatments and results, but in the interest of everyone being different, here's what happened for me:

    When the rectal cancer was discovered, it was very low, and there was not alot of room to work with to reconnect me - really just a few millimeters from a successful hookup or a permanent colostomy.

    The tumor was too large, so the decision was made to radiate the are 25x over 5 weeks to shrink the tumor enough so that surgery could be done and I could be reconnected without a colostomy.

    Let's talk fatigue first - About 3 weeks in you will start to feel the effects...I was really tired and fatigued - I was working through my radiation and chemo treatments during this and would get this done last appointment about 4:45pm, so I could work, go to radiation, and then go home and go to bed. As time wore on, I got to where I missed more and more days at work, until I was just missing whole days altogether - at the end I was in bed about 20 hours a day just getting up to go to the bathroom. Even when the radiation stopped, it took about 4 weeks to start gathering energy and feeling better.

    Next, let's talk burns...yes the rectum area does get sunburned and it does hurt. Also for me, the intestinal tissues themselves began to shed like a snake and when you had a BM, you would see your insides literally in the toilet bowl...very surreal...but it's the scar tissue sloughing off or something. My radiation oncologist told me that my intestines were like "fried bacon."

    It is true that once an area has been radiated, that's it - can't be done there anymore. What they did not tell me is that external beam radiation will bounce off your bones and inadvertantly the beam will hit other organs in and around where they are trying to beam.
    What they did tell me was that now that radiation was over, the colleratal damamge would continue to be an issue for the rest of my life and that as you age, things could get worse for me. But what do you do? You're trying to save your life, I was very early on in those days, so I just did what I was told to do. I'm sure the radiation sterilized me too...they never gave me any information about what I could do before I started.

    One last thing...the onc told me that radiation goes in and it has to come out somewhere. So for men and women there is a different EXIT point based on our anatomical features. I won't go into detail for what happens to me...safe to say that the radiation acts as large wildfire and burns all tissues all the way out of that exit point. Again, doctors telling me nothing, until I went in and told them an organ was burnt RED. They gave me some cream to use for that and after awhile the redness subsided.

    But the collateral effects of that, were that things did not work correctly or at all at times and even going to the bathroom was a new experience...dysfunction occurs but tissues eventually repair to a degree and drugs like Cialis can help things be better, but not like before. Again, though you are trying to save your life - just wish the doctors would tell you more in advance...

    So for a woman, I cannot say, but the other posts give me a good idea - it just changes us.

    I've had CyberKnife radiation treatments which are more humane and better target the tumor, but of course it's only used for specific things - general or external beam radiation sounds like what you are will be doing.

    I am wish you all the luck in the world...this was just my experience with it, which differs from the others that I've read on this post...I hope yours goes better...but this will give you some additional perspective.

    -Craig
  • pluckey
    pluckey Member Posts: 484 Member
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    answers to your questions
    I am on folfuri and get the 48-hour 5FU pump. I haven't met with radiologist yet (this thursday, aug 27) so I will hopefully know more of their plans. Margins were clear when they did durgery to remove tumor in colon. I have mets to liver
  • pluckey
    pluckey Member Posts: 484 Member
    Options

    Fossamax...
    Hi Peggy! Fossamax is an osteoporosis medication. It keeps the body from losing bone, and in some patients can actually reverse some bone loss. It especially works well with high doses of calcium. They have me on 1500 mg per day with 800 of vitamin D. You may be fine if you take the calcium/D supplement, but i would definitely discuss it with your rad onc. Especially since you've already gone through menopause.

    I didn't know they did preventive radiation for cc. I've heard of it done for breast cancer, though. Did they give you this as an option to do instead of the folfox 6? Are they putting you on the 5fu pump while you're doing radiation? Are they recommending radiation because your margins were not clear?

    Sorry for all the questions! The treatments are always changing, and since i'm nearly positive i have a recurrence, i'm exploring options. Though i can't ever receive radiation in that area again, thank God!!! One more question: when is your takedown?

    Many hugs,
    Krista

    forgot to add..
    my takedown is August 31st wish me luck
  • pluckey
    pluckey Member Posts: 484 Member
    Options
    Sundanceh said:

    My story with radiation
    Hi Peggy

    I seem to differentiate with my treatments and results, but in the interest of everyone being different, here's what happened for me:

    When the rectal cancer was discovered, it was very low, and there was not alot of room to work with to reconnect me - really just a few millimeters from a successful hookup or a permanent colostomy.

    The tumor was too large, so the decision was made to radiate the are 25x over 5 weeks to shrink the tumor enough so that surgery could be done and I could be reconnected without a colostomy.

    Let's talk fatigue first - About 3 weeks in you will start to feel the effects...I was really tired and fatigued - I was working through my radiation and chemo treatments during this and would get this done last appointment about 4:45pm, so I could work, go to radiation, and then go home and go to bed. As time wore on, I got to where I missed more and more days at work, until I was just missing whole days altogether - at the end I was in bed about 20 hours a day just getting up to go to the bathroom. Even when the radiation stopped, it took about 4 weeks to start gathering energy and feeling better.

    Next, let's talk burns...yes the rectum area does get sunburned and it does hurt. Also for me, the intestinal tissues themselves began to shed like a snake and when you had a BM, you would see your insides literally in the toilet bowl...very surreal...but it's the scar tissue sloughing off or something. My radiation oncologist told me that my intestines were like "fried bacon."

    It is true that once an area has been radiated, that's it - can't be done there anymore. What they did not tell me is that external beam radiation will bounce off your bones and inadvertantly the beam will hit other organs in and around where they are trying to beam.
    What they did tell me was that now that radiation was over, the colleratal damamge would continue to be an issue for the rest of my life and that as you age, things could get worse for me. But what do you do? You're trying to save your life, I was very early on in those days, so I just did what I was told to do. I'm sure the radiation sterilized me too...they never gave me any information about what I could do before I started.

    One last thing...the onc told me that radiation goes in and it has to come out somewhere. So for men and women there is a different EXIT point based on our anatomical features. I won't go into detail for what happens to me...safe to say that the radiation acts as large wildfire and burns all tissues all the way out of that exit point. Again, doctors telling me nothing, until I went in and told them an organ was burnt RED. They gave me some cream to use for that and after awhile the redness subsided.

    But the collateral effects of that, were that things did not work correctly or at all at times and even going to the bathroom was a new experience...dysfunction occurs but tissues eventually repair to a degree and drugs like Cialis can help things be better, but not like before. Again, though you are trying to save your life - just wish the doctors would tell you more in advance...

    So for a woman, I cannot say, but the other posts give me a good idea - it just changes us.

    I've had CyberKnife radiation treatments which are more humane and better target the tumor, but of course it's only used for specific things - general or external beam radiation sounds like what you are will be doing.

    I am wish you all the luck in the world...this was just my experience with it, which differs from the others that I've read on this post...I hope yours goes better...but this will give you some additional perspective.

    -Craig

    Thanks for your story
    I totally appreciate your candor- what a living hell you've gone thru darling. I am collecting this info mfor questions for the radiologist this week. Do I want to go thru this with all the collateral damage? They are doing this as a preventive measure so colon cancer doesn't return...what a price to pay. Maybe it won't be as bad if it's not so many treatments.

    But first things first, my ileo reversal next week. My portacath is also having issues- rash and soreness all around the site(probably from tagaderm bandage) so I can't get my full chemo cocktail till it heals. After a week in the hospital with recal pain and BMs when I shouldn't be having them, it's been a whirlwind of issues.

    Thanks againg Craig- blessing to you

    Peggy

    follow the good bad & the ugly of my journey at http://www.peggyluckey.blogspot.com
  • peacegift2002
    peacegift2002 Member Posts: 16
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    pelvic radiation
    I haven't been on here in awhile, and your question touched me. I know you are scared. By now you know that radiation can be pretty difficult. However, it also can be effective. They are very good at targeting specific areas. I have had pelvic and later, radiation to the chest area. That scarred my lung badly, and I was not really warned about that because it is pretty rare. However, pelvic radiation will tire you, and you must watch what you eat. You will probably meet with a nutritionist to help with that. Get those flushable moist wipes or a spray water bottle for bowel movements. Use the gel they give you and whatever side effects you have, get treatment for them.

    Frankly, it takes longer to get there than the treatment, and that was a big pain - every day, same time. But the support from everyone there doing the same thing is pretty nice.

    Good luck to you.
  • kimby
    kimby Member Posts: 797
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    Pelvic Rads
    Peggy,

    You already have had great responses with good info. There is one area that most are really reluctant to discuss, including your doctors. Sexual disfunction issues. Talk to your radiation oncologist about this. Ask about vaginal stenosis and prevention issues. I had internal (vaginally) radiation done 6 years ago and can tell you that you need to do what they say FOREVER. My gyn onc told me there were 3 lifetime rules for me to follow:

    1. One glass of red wine daily
    2. Red meat at least 3 times a week
    3. Sex 3-4 times a week.

    Yes, rules to live by! He is still my all time favorite doctor! LOL

    If you want more detailed info please PM me. I can be pretty frank if you need it.

    Kimby
  • tiny one
    tiny one Member Posts: 465 Member
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    radiation
    I had radiation for 5 1/2 weeks, 5 days a week. I had mild fatique, stayed active the whole time. I also had a temporary ileostomy. It was reversed 2 months after I was done with treatment. I have vaginal shortening from the radiation and rectal narrowing from radiation. This has made it pretty tough after they did the reversal. Due to the vaginal problem I'm not able to have relations. They will tell you to use a dialator, make sure you do. Also radiation can cause alot of intestinal problems also. I only had a little bit of skin irritation, no burns, and this didn't happen until I was almost done with treatment. I lost almost all of my hair in the pelvic area, but did not lose my hair on my head. My ileostomy spared me from having diarrhea all during treatment. I have been cancer free for 2 years. I was stage 3 with one lymph node testing positive. Good luck to you.
  • polarprincess
    polarprincess Member Posts: 202 Member
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    hi
    Hi, i had radiation post surgery as well. For me it was an absolute hell, and I am not saying that to scare you but for you to be prepared for the worst possible side effects, and then you know it can't get worse. I would highly suggest you go to the colonclub.com and pm weissoccermom, she is our resident radiation specialist and can give you some great suggestions on how to avoid the worst side effects. I know she got through it relatively unscathed. The first 2 weeks for me were not bad at all. i had barely any side effects at all. carrying around the chemo pump however was a pain. I did not get diarrhea, i got horrible constipation instead which was main problem as it triggered a whole lot of other issues like an anal fissure that caused excruciating bm's for almost a year now. I got terrible burns and black skin and macerated skin. By bowels hurt so bad internally that i had to sit on a heating bad or in a bathrub for hours at a time. I was on strong pain killers which barely put a dent in the pain. I was 42 years old at the time and it did put me into menopause. It also caused severe issues with my bones. My hips and back are so stiff i feel like a cripple. I have not been tested for osteoporosis yet, but suspect i have it. It caused my female areas to swell up so badly that it felt like one big puffy balloon. I bled from every orifice and passed tissue and clots. I had times when i had bowel movements just come out of nowhere like it was being forced out, and i had a couple of accidents because i could not get to the bathroom in time so i had to stay pretty close to home. My bladder burned and it hurt terribly to use the bathroom. I got vaginal stenosis pretty and it dried me up pretty good. I have been able to resume sexual relations in certain positions with the help of dilators, lots of lube, and a product called REPLENS. Now after reading this..it is highly unlikely you will experience radiation like i did so hopefully it will help you to put things in perspective about the side effects should you have any. I know i thought chemo was horrible until i had radiation, and then after radiation chemo seemed like a piece of cake. Good luck to you!! I am sure you will do just fine!
  • colocolo2
    colocolo2 Member Posts: 5
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    My treatment
    I just ended my treatments about 2 weeks. 30 days of 5days a week radiation and a 24hr 7day a week 5fu pump.
    You are probably already starting your treatments from the dates I saw. I think mine was book work to a tea!!!!!!!!!! My hair thinned alot, my bowels were extremely loose and even now I'm still in severee pain when I have a bowel movement. It's not constipation its just pain, my husband has dealt with my accidents and I never thought at 44 I'd be wearing depends on a regular basis but they have been my best friend and still are.
    3 weeks into surgery I had to stop due to a sore in the field sight and after that week off, I developed an infection in my leg area from my accident that sat me off another week.
    I thought I'd just start over, WRONG!!!!!!!!!, my body went right back to severee diarrhea and immod. ad didn't do the job anymore. When first diagnost, I weight about 140, I currently hit scales at 126, I have no appetite and whatever you do DON'T EAT FRIED FOOD, YOU'LL NEVER MAKE IT TO THE BATHROOM!!!!!!! Just remember everyone is different, but as everyone has discussed, you will get a burn, irration, and may even sores. Don't be embarrassed to tell you nurses, they have excellent creams and meds that are a blessing.
    Good luck.
  • just4Brooks
    just4Brooks Member Posts: 980 Member
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    colocolo2 said:

    My treatment
    I just ended my treatments about 2 weeks. 30 days of 5days a week radiation and a 24hr 7day a week 5fu pump.
    You are probably already starting your treatments from the dates I saw. I think mine was book work to a tea!!!!!!!!!! My hair thinned alot, my bowels were extremely loose and even now I'm still in severee pain when I have a bowel movement. It's not constipation its just pain, my husband has dealt with my accidents and I never thought at 44 I'd be wearing depends on a regular basis but they have been my best friend and still are.
    3 weeks into surgery I had to stop due to a sore in the field sight and after that week off, I developed an infection in my leg area from my accident that sat me off another week.
    I thought I'd just start over, WRONG!!!!!!!!!, my body went right back to severee diarrhea and immod. ad didn't do the job anymore. When first diagnost, I weight about 140, I currently hit scales at 126, I have no appetite and whatever you do DON'T EAT FRIED FOOD, YOU'LL NEVER MAKE IT TO THE BATHROOM!!!!!!! Just remember everyone is different, but as everyone has discussed, you will get a burn, irration, and may even sores. Don't be embarrassed to tell you nurses, they have excellent creams and meds that are a blessing.
    Good luck.

    My treatment story
    I have 6 1/2 weeks of Radation treatments. I went in 5 days a week and got zaped. While doing so I was on chemo (24hr pimp 7 days a week). I'm Not going to lie to you the Radation was hell..The first week or two wasn't too bad. Then soon after that forst week or so I got so tired that it was a work out just to get up to use the bathroom. Just to move was hard. Now lets talk about PAIN. The hardest thing for me was feeling like a had to poop ALL THE TIME then nothing would come out. Then the worst hemroids!!! But remember to keep going. Try not to miss a day because they will only add in onto the end. I set a date that I will be done with radation and hell or high water I was going to get it done.

    Brooks
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