What I learned at Colon Palooza I

scouty
scouty Member Posts: 1,965 Member
edited March 2014 in Colorectal Cancer #1
Hi to you all.

I am back home now after a wonderful heartfelt weekend in Biloxi. As a fairly new person on this board (March of 2004)and the only one there that has active cancer, I wanted to share what it meant to me.

I am stage IV with mets to liver and lungs. I stopped chemo after 8 months and am now doing the juicing/vitamin/diet regime with the help of a Naturapathic Dr. I went off my regime some over the weekend but the benefits far out weighed that.

I had read the Lance book, "It's Not About The Bike", but had no idea what he meant about survivorship. I understand it more now after spending time with SpongeBob and Lisa Rose. It was amazing to be able to sit and talk with others about cancer, chemo, doctors, symptoms, families, friends, and all sorts of other stuff (yes we told a few dirty jokes too). It had been a long time since I have laughed as much as I did. It was absolutely the best medicine I could have "taken". I have not stopped smiling since I got there on Thursday. I found myself sitting and gambling and smiling the whole time. Icing on the cake was getting to talk to a few others (Kerry, Stacy, and Kanga had sent their phone numbers). I tear up just typing about it (blue eyed folks cry easily). I felt so many of you while down there and credit you all for my "luck" at the tables. The camraderie, fellowship, and love was overpowering. I will carry that wonder with me every day now.

I am still amazed at how comfortable and natural it was meeting folks for the very first time. I had no idea what to expect and was so excited yet apprehensive beforehand. But, it was all so free flowing and easy. I don't think I can really put it into the right words.

I am sharing all of this with you because we are going to have another one this fall (date TBD). We decided that since we were the semicolins, we should have semi-annual reunions. SEMI squared kind of a thing. Airfare and hotels are very reasonable (and accommodating) in Las Vegas, so we chose it.

My mantra for the weekend was one from our own Sweet Baby Girl, Andrea.... "This cancer may kill me, but not today". I lived that this weekend. I began the next phase of my life as a cancer survivor. I am not cancer free yet, but will fight like hell to get there. I intend on being at the 50th Colin Palooza in 25 years!!!!!

I hope to see many more of you at Colin Palooza II. And if you can't come, just send us your phone number and we will call you.

It was truly awesome and we want to share it with more of you the next time. I am going to contact my employer (AT&T) to help pay for long distance calls to whereever we need to make them.

Lisa P.

Comments

  • rejoyous
    rejoyous Member Posts: 259
    Hi Lisa, and the rest of you who kept us on a virtual reunion with you,

    Thanks for your great writeup. Inspiring. I'm so grateful for this group and its spirit. And Andrea, you are a treasure. Thanks for bringing us non-attenders along!
  • slammer
    slammer Member Posts: 120
    Hi Lisa, This is Amy & I haven't written to you before but ya know we all seem to know each other some-how/ someway & so great for you to share & update us as to the fun you had & the meeting new people (didn't feel like new)! Awesome, for the next one, Oh my Gosh my sister lives in Vegas & says when I am thru w/ chemo (or when ever I want) to get out there & see them. Maybe that will happen & we can meet too w/ you & Bob & others. I am in Calif, so I know I will go! Thanks again for letting us be there, you are great and sooooo happy you had FUN & made memories! Good Times/No worries
    Love Amy
  • JKendall
    JKendall Member Posts: 186
    Hey Lisa...Sounds like ya'll had a great time. That was a great, inspiring post. Sure wish we could have come, but Jerri really felt bad and was finishing up the radiation. That SUCKED.

    I really hope hard that we can hook up with you guys...maybe Vegas will work. Jerri's got family there.

    What a fantastic "treatment program" you guys started!

    Jimmy
  • scouty
    scouty Member Posts: 1,965 Member
    rejoyous said:

    Hi Lisa, and the rest of you who kept us on a virtual reunion with you,

    Thanks for your great writeup. Inspiring. I'm so grateful for this group and its spirit. And Andrea, you are a treasure. Thanks for bringing us non-attenders along!

    Rejoyous,

    I love that. Makes me happy just reading your "handle". You will have to try to be there so you can feel it. Being with the semi-colins in person is even better then this board and that is saying something!!!!!

    Lisa P.
  • scouty
    scouty Member Posts: 1,965 Member
    slammer said:

    Hi Lisa, This is Amy & I haven't written to you before but ya know we all seem to know each other some-how/ someway & so great for you to share & update us as to the fun you had & the meeting new people (didn't feel like new)! Awesome, for the next one, Oh my Gosh my sister lives in Vegas & says when I am thru w/ chemo (or when ever I want) to get out there & see them. Maybe that will happen & we can meet too w/ you & Bob & others. I am in Calif, so I know I will go! Thanks again for letting us be there, you are great and sooooo happy you had FUN & made memories! Good Times/No worries
    Love Amy

    Hi Amy!!!!

    You will not believe it. I learned so much. I have been home almost a day now and am just letting it all sink in. It was truly amazing. It was like a spiritual experience, so powerful. Words will never be able to express it. I am still smiling. Since you are in Calif., you have no excuse. Trust me, you will not regret it.

    Lisa P.
  • scouty
    scouty Member Posts: 1,965 Member
    JKendall said:

    Hey Lisa...Sounds like ya'll had a great time. That was a great, inspiring post. Sure wish we could have come, but Jerri really felt bad and was finishing up the radiation. That SUCKED.

    I really hope hard that we can hook up with you guys...maybe Vegas will work. Jerri's got family there.

    What a fantastic "treatment program" you guys started!

    Jimmy

    Jimmy,

    You crack me up. Hopefully Jerri will be up to it by then. I think one of the most important things I learned was that when you are fighting this ****, you can get self absorbed in it. You know you aren't you while on chemo and it makes you feel so bad, one can get into some negative places in your own head. I am usually a firm believer in positive thinking and have decided that we do not post enough on this board when we are having good days. Don't get me wrong, we should post whatever we need to. I am just going to make an effort to post good things too. We all have good things that happen every day, we need to celebrate them while we know we can post when we need support also.

    Funny and inspiring posts are just as welcome is my point. I sincerly hope you can make it too!!!!

    Lisa P.
  • grandma047
    grandma047 Member Posts: 381
    Hey Lisa, Sounds like you had a wonderful time. Wish I could have been there. I feel like I know all of you anyways. Maybe I'll be able to make the next one. Sure hope so. I didn't know you worked for AT&T. I retired from Verizon. 18 years with them. Retired in 1994. I don't know if Verizon is in all states, but in case it isn't, it's the local phone company, not long distance. I was with them before the split though. I started there in 1977. My daughter was 11 months old at the time. Long time ago. Well, it was good to hear from you and thanks for updating us. I'll keep you in my prayers. I'm now doing the FOLFOX4 chemo treatment, so remember me in your prayers too. It's already making me sick. I'll endure it as long as I can though. Have to beat this beast!!!
    Love and prayers, Judy(grandma047)
  • scouty
    scouty Member Posts: 1,965 Member

    Hey Lisa, Sounds like you had a wonderful time. Wish I could have been there. I feel like I know all of you anyways. Maybe I'll be able to make the next one. Sure hope so. I didn't know you worked for AT&T. I retired from Verizon. 18 years with them. Retired in 1994. I don't know if Verizon is in all states, but in case it isn't, it's the local phone company, not long distance. I was with them before the split though. I started there in 1977. My daughter was 11 months old at the time. Long time ago. Well, it was good to hear from you and thanks for updating us. I'll keep you in my prayers. I'm now doing the FOLFOX4 chemo treatment, so remember me in your prayers too. It's already making me sick. I'll endure it as long as I can though. Have to beat this beast!!!
    Love and prayers, Judy(grandma047)

    Hi Judy,

    We would love to have you. More about that later. I'll have 25 years with AT&T this Friday. I am out on medical disability right now but am getting ready to go back to work soon. I saw all of your other posts about the folfox treatment. I did it for 8 months with Avastin too so I can relate. Most of us on this board that are stage III or IV have done it. Chemo is not for wimps that is for sure. It's tough. Just remember why you are doing it and try not to let the negative stuff get to you.

    Lisa P.
  • andreae
    andreae Member Posts: 236
    Dearest Lisa,

    I remember how pleased I was to read that you were going to the reunion. No better cure than a vacation with loving friends. I am so very happy about your good time. I hope to be there at the next reunion (no WAY I'm passing up Vegas!) because I sincerely believe that laughter and caring is the best medicine for the soul. Cancer may eat away at our health, but our WELLNESS is out of its reach!

    Happy you are home safe and sound. Keep up the juicing. Don't stop the fight. Know you are loved and embrace the memories from the reunion.

    Be well,
    Andrea
  • Kanort
    Kanort Member Posts: 1,272 Member
    Hi Lisa,

    I'm so happy that you were able to go to Biloxi and spend some time with the others. Your message says it all. It actually gave me goosebumps when I read it.

    You are right about sharing our good news as well as our struggles. Last week I got my results of my six month post chemo scans and I was NED. However, I was reluctant to start a post with so many others not receiving good news.

    I'll be at the Vegas reunion. I can't wait.

    Hugs,

    Kay
  • scouty
    scouty Member Posts: 1,965 Member
    Kanort said:

    Hi Lisa,

    I'm so happy that you were able to go to Biloxi and spend some time with the others. Your message says it all. It actually gave me goosebumps when I read it.

    You are right about sharing our good news as well as our struggles. Last week I got my results of my six month post chemo scans and I was NED. However, I was reluctant to start a post with so many others not receiving good news.

    I'll be at the Vegas reunion. I can't wait.

    Hugs,

    Kay

    Kay,

    Congrats and big ole hugs but honey, please post it. That is exactly what I meant about positive posts. The ones with the sad posts need the positive ones too. They need to know that good things can happen!!!!

    If you don't do it by tomorrow, I will do it for you....I may do it anyway!!!!

    I am really tired but give me another few days and I will be ready for Vegas!!!!! See you there!!!

    Lisa P.
  • scouty
    scouty Member Posts: 1,965 Member
    andreae said:

    Dearest Lisa,

    I remember how pleased I was to read that you were going to the reunion. No better cure than a vacation with loving friends. I am so very happy about your good time. I hope to be there at the next reunion (no WAY I'm passing up Vegas!) because I sincerely believe that laughter and caring is the best medicine for the soul. Cancer may eat away at our health, but our WELLNESS is out of its reach!

    Happy you are home safe and sound. Keep up the juicing. Don't stop the fight. Know you are loved and embrace the memories from the reunion.

    Be well,
    Andrea

    Thank you SBG (sweet baby girl).

    It was my very first time on a big adventure in 2 years and you are absolutely right about feeding the soul (wellness comes from within). It was the very best thing I could have done. Please try to be in Vegas so you can see and feel it for yourself!!!! I got enough laughter medicine to last me a few weeks.

    Lisa P.
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    scouty said:

    Kay,

    Congrats and big ole hugs but honey, please post it. That is exactly what I meant about positive posts. The ones with the sad posts need the positive ones too. They need to know that good things can happen!!!!

    If you don't do it by tomorrow, I will do it for you....I may do it anyway!!!!

    I am really tired but give me another few days and I will be ready for Vegas!!!!! See you there!!!

    Lisa P.

    Awwwww--late again as usual. Sorry Scouty...hope yu read this. As you know I kinda lost tha plot on the phone. Had to pass it to Jen while I composed myself!!!
    You looked so happy in the pics, Lisa!!!I guess you know now how I feel about all yu guys...fancy little 'ol me doing a tear jerker on the landline. It goes to show just how much I sincerely think of you and everone else here.
    Take it easy now babe and wind down a bit....musta been a bit tiring but glad you had a great time,
    lotsa luv n huggs, Ross n Jen