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Ohana Request - Cancer Diagnosis - Latest Update (page 1) & Trying Again

Given2Fly-FishGiven2Fly-Fish Posts: 804
edited September 19 in The Porch
Hi Everyone,

So on April 2nd I was told I had Stage 4 Pancreatic Cancer (so for the whole month my family and I thought that I had months to live).  I found out when I went in to Dana Farber in early May after 2 second opinions and a biopsy that I have a different kind of Pancreatic Cancer (Neuroendocrine Pancreatic Cancer - PNET - think Steve Jobs).  Still not great news but I feel like I hit the lottery (treatable but not curable - at least today!).  The difference is years vs. months, so hopefully I get to watch my boys (19, 18 & 15) turn into men.  I am lucky in that with the treatment right now there are minimal side affects so I can still work, spend quality time with the family and continue to do the things in life I love to do (workout, surf (surfed with Ed a couple of years ago), play lacrosse and fly-fish).  My wife (24 years - met in college) Julie and I will be at Ohana and this will be our first concert together since my diagnosis.  I am 53 and have been a fan since '92 and seen PJ 31 times.  Julie has been to many of these concerts with me and is a fan by osmosis (as is the rest of the family... :)).  Anyway it's been a long road since April for us and hopefully I have a long road ahead of me.  As such, I would love to hear Long Road for my wife Julie and I at Ohana.

Update - So it's hard to believe it's been 2 1/2 years since my diagnosis.  I did chemo for a year and have been getting monthly injections for the past year and a half to keep everything knocked down.  I feel great and still working, surfing, playing lacrosse and fly-fishing.  We've been able to knock a few items off of the bucket list (saw Orcas in Vancouver 2 years ago, surfed Waikiki this summer and went cage diving with sharks in Hawaii).  Julie and I are going to the first Ohana weekend and can't wait!!!  As I continue to check items off the list I figured I would give this request another shot...

Latest Update - 9/19/23 - Well I'm officially an outlier as I've outlived the mean average for my diagnosis (4 years).  It's been a long 4 1/2 years (12 months of chemo, monthly treatments and 6 months of radiation this past year).  I'm extremely grateful that with modern medicine I've tolerated these treatments extremely well.  September was my 54th consecutive month surfing in MA since my diagnosis (I even surfed the day after radiation treatment).  I've also been able to play lacrosse with my boys which has been awesome (I also got back into coaching lacrosse).  I also got my first tattoo (stickman on a surfboard) and went dog-sledding up in ME last winter.  Most important; I've been able to be here for some significant milestones - My youngest son graduated from High School, my middle son is a sophomore in college and my oldest got his first real job.  There was a time that I didn't think I would see ANY of this...Anyway, Julie and I are going to our 4th Ohana Festival and can't wait!!!  Would love to hear Long Road if possible but honestly just psyched for our 4th Ohana Festival and the amazing line-up!!!

Thanks for listening and take care of yourselves (and enjoy life!),

Chip O'Brien
Boston, MA

Post edited by Given2Fly-Fish on
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Comments

  • F Me In The BrainF Me In The Brain this knows everybody from other commets Posts: 29,411
    Wow, Chip -- so sorry to hear, but love your outlook and love that the diagnosis changed to years.  (May we all have "years" - just as many as we can steal away.)
    Enjoy Ohana!
    The love he receives is the love that is saved
  • pearljammr78pearljammr78 Posts: 1,613
    Sorry to hear about that but your positive attitude is inspiring. Would love to read about your surfing session with Ed too one day. Long road is always a great song and I hope you get to enjoy it at Ohana. I hope you have a long smooth road ahead of you. Stay strong!!! Enjoy Ohana fest!
    Peace,Love and Pearl Jam.
  • Given2Fly-FishGiven2Fly-Fish Posts: 804
    F Me In The Brain said:
    Wow, Chip -- so sorry to hear, but love your outlook and love that the diagnosis changed to years.  (May we all have "years" - just as many as we can steal away.)
    Enjoy Ohana!
    Thank you I appreciate it and like the "stealing away" comment!  I know these type of threads bum people out and that is not my intent.  I figured that if I was ever going to make a request now is the time.  Just got our wristbands in the mail today and can't wait!
  • Given2Fly-FishGiven2Fly-Fish Posts: 804
    pearljammr78 said:
    Sorry to hear about that but your positive attitude is inspiring. Would love to read about your surfing session with Ed too one day. Long road is always a great song and I hope you get to enjoy it at Ohana. I hope you have a long smooth road ahead of you. Stay strong!!! Enjoy Ohana fest!
    Thank you and we will!  I don't want to get into too much detail on the surfing session (I don't want to ruin the spot for Ed) but he is exactly how you would expect.  I caught a wave and was paddling back out and I looked over and Ed was paddling out right next to me... :o   I said hi and he paddled over and shook my hand and said nice to meet you.  As we paddled to the break I thanked him and told him how much the music meant to me in my life and in surfing.  He then said let's go catch a wave and we caught the next set (my and EV riding the same wave!).  Knowing I was from Boston he asked me about the Sox and we talked Red Sox and Cubs.  We surfed for about an hour and talked a bit more as I wanted to give him his space. He gave me a shout out when I was riding on a wave as he was paddling back out over the wave I was on.  I could see that he was paddling away from the break and he stopped and asked me my name again and said nice meeting you before he had to leave (which he didn't have to do).  To have an organic experience like that and getting to share something that we both love was nothing short of amazing!
  • mfc2006mfc2006 HTOWN Posts: 37,211
    Hey man,
    So happy to hear that your diagnosis has changed and love your outlook on the road ahead. I hope you get to hear Long Road and that you and your wife have an awesome time at Ohana! 

    Cheers,
    Matt
    I LOVE MUSIC.
    www.cluthelee.com
    www.cluthe.com
  • on2legson2legs Standing in the Jersey rain… Posts: 13,804
    Good luck... hope you get your song!
    1996: Randall's Island 2  1998: East Rutherford | MSG 1 & 2  2000: Cincinnati | Columbus | Jones Beach 1, 2, & 3 | Boston 1 | Camden 1 & 2 2003: Philadelphia | Uniondale | MSG 1 & 2 | Holmdel  2005: Atlantic City 1  2006: Camden 1 | East Rutherford 1 & 2 2008: Camden 1 & 2 | MSG 1 & 2 | Newark (EV)  2009: Philadelphia 1, 2 & 4  2010: Newark | MSG 1 & 2  2011: Toronto 1  2013: Wrigley Field | Brooklyn 2 | Philadelphia 1 & 2 | Baltimore  2015: Central Park  2016: Philadelphia 1 & 2 | MSG 1 & 2 | Fenway Park 2 | MSG (TOTD)  2017: Brooklyn (RnR HOF)  2020: MSG | Asbury Park  2021: Asbury Park  2022: MSG | Camden | Nashville


  • pearljammr78pearljammr78 Posts: 1,613
    Given2Fly-Fish said:
    pearljammr78 said:
    Sorry to hear about that but your positive attitude is inspiring. Would love to read about your surfing session with Ed too one day. Long road is always a great song and I hope you get to enjoy it at Ohana. I hope you have a long smooth road ahead of you. Stay strong!!! Enjoy Ohana fest!
    Thank you and we will!  I don't want to get into too much detail on the surfing session (I don't want to ruin the spot for Ed) but he is exactly how you would expect.  I caught a wave and was paddling back out and I looked over and Ed was paddling out right next to me... :o   I said hi and he paddled over and shook my hand and said nice to meet you.  As we paddled to the break I thanked him and told him how much the music meant to me in my life and in surfing.  He then said let's go catch a wave and we caught the next set (my and EV riding the same wave!).  Knowing I was from Boston he asked me about the Sox and we talked Red Sox and Cubs.  We surfed for about an hour and talked a bit more as I wanted to give him his space. He gave me a shout out when I was riding on a wave as he was paddling back out over the wave I was on.  I could see that he was paddling away from the break and he stopped and asked me my name again and said nice meeting you before he had to leave (which he didn't have to do).  To have an organic experience like that and getting to share something that we both love was nothing short of amazing!
    What a great story. Sounds like it couldn’t have happened to a cooler guy. Thank you for sharing. Have fun at Ohana. Really hope you get Long Road. And a long and happy life. 
    Peace,Love and Pearl Jam.
  • YourDirtisMyfoodYourDirtisMyfood Boston Posts: 4,147
    Thinking of you, Chip and your family during the Ohana festival.  
  • Given2Fly-FishGiven2Fly-Fish Posts: 804
    YourDirtisMyfood said:
    Thinking of you, Chip and your family during the Ohana festival.  
    Thank you very much!
  • Given2Fly-FishGiven2Fly-Fish Posts: 804
    mfc2006 said:
    Hey man,
    So happy to hear that your diagnosis has changed and love your outlook on the road ahead. I hope you get to hear Long Road and that you and your wife have an awesome time at Ohana! 

    Cheers,
    Matt
    Hi Matt - Thanks and cheers back to you!  Chip
  • jjflashjjflash Posts: 4,734
    Hey Chip,

    Thanks for sharing your story (and the Ed surfing adventure too :sunglasses:). Your positive and courageous outlook is inspiring. May your years multiply, and hope you and Julie get to hear Long Road at Ohana!

    Long may you run,

    David
  • nuzzer1nuzzer1 New Jersey Posts: 1,408
    Wishing you the best Chip and that you get this request! Enjoy the trip!!!!
  • jacquelyncajacquelynca Yay Area CA Posts: 372
    edited August 2019
    Hope you get your request! I’ll be there too, maybe I’ll see you (in the front fingers crossed). Love your positive attitude! A cure is coming, and treatment has come a long way. I have a friend who is living with stage 4 colon cancer, she has a IG that is really inspiring @tenacious_jess if you’d like to follow along in her adventures living with cancer.  All the best to you and your fam. And again i hope you get your request!!
    Post edited by jacquelynca on
    IG and twitter - @jacquelynincali

    1994 - Bridge School Benefit, Shoreline Mountain View CA
    *** 1995 - 2015 High School, College, Broke, Having Kids***
    2016 - Temple of the Dog, Bill Graham Civic Center Auditorium, San Francisco CA
    2017 - Eddie Vedder, Bourbon and Beyond, Louisville KY
    2018 - The Home Shows, Show 2, Seattle WA
    2019 - Eddie Vedder, Ohana Fest, Dana Point CA
    2020- Oakland Nights 1 and 2
    2020 - Ohana Fest
    2021 - Ohana Fest
    2022 - Oakland 1 and 2

    "Watch out for music. It should come with a health warning. It can be dangerous. It can make you feel so alive, so connected to the people around you, and connected to what you really are inside. And it can make you think that the world should, and could, be a much better place. And just occasionally, it can make you very, very happy." -Peter Gabriel
  • Given2Fly-FishGiven2Fly-Fish Posts: 804
    jacquelynca said:
    Hope you get your request! I’ll be there too, maybe I’ll see you (in the front fingers crossed). Love your positive attitude! A cure is coming, and treatment has come a long way. I have a friend who is living with stage 4 colon cancer, she has a IG that is really inspiring @tenacious_jess if you’d like to follow along in her adventures living with cancer.  All the best to you and your fam. And again i hope you get your request!!
    HI Jacquelyn - Yes I would like to get up front as well.  How early do you think we should get there to get close?  Thanks for the share on Jess and I just started following (@given2flyfish).  Take care and hopefully I'll see you up front! 
  • jacquelyncajacquelynca Yay Area CA Posts: 372
    Given2Fly-Fish said:
    jacquelynca said:
    Hope you get your request! I’ll be there too, maybe I’ll see you (in the front fingers crossed). Love your positive attitude! A cure is coming, and treatment has come a long way. I have a friend who is living with stage 4 colon cancer, she has a IG that is really inspiring @tenacious_jess if you’d like to follow along in her adventures living with cancer.  All the best to you and your fam. And again i hope you get your request!!
    HI Jacquelyn - Yes I would like to get up front as well.  How early do you think we should get there to get close?  Thanks for the share on Jess and I just started following (@given2flyfish).  Take care and hopefully I'll see you up front! 
    I just followed you :-)  I told my husband on Saturday we need to get there as soon as the festival gates open and i plan on planting myself in the front all day. My only concerns are bathroom but I’ll try and take care of all that earlier on, drink minimal water and just eat beef jerky to curb my appetite haha! I’m also a little concerned about when mudhoney goes on...i have to see them again so hopefully they’re on the same stage and hopefully there’s not too much moshing in the front bc i can’t handle that. If we find each other in the front we should all save each others spots if someone has to go to the bathroom, get food, etc. 
    IG and twitter - @jacquelynincali

    1994 - Bridge School Benefit, Shoreline Mountain View CA
    *** 1995 - 2015 High School, College, Broke, Having Kids***
    2016 - Temple of the Dog, Bill Graham Civic Center Auditorium, San Francisco CA
    2017 - Eddie Vedder, Bourbon and Beyond, Louisville KY
    2018 - The Home Shows, Show 2, Seattle WA
    2019 - Eddie Vedder, Ohana Fest, Dana Point CA
    2020- Oakland Nights 1 and 2
    2020 - Ohana Fest
    2021 - Ohana Fest
    2022 - Oakland 1 and 2

    "Watch out for music. It should come with a health warning. It can be dangerous. It can make you feel so alive, so connected to the people around you, and connected to what you really are inside. And it can make you think that the world should, and could, be a much better place. And just occasionally, it can make you very, very happy." -Peter Gabriel
  • jacquelyncajacquelynca Yay Area CA Posts: 372
    https://youtu.be/qSZYeDkdmI0

    @Given2Fly-Fish just posted on Eddies Facebook <3 
    IG and twitter - @jacquelynincali

    1994 - Bridge School Benefit, Shoreline Mountain View CA
    *** 1995 - 2015 High School, College, Broke, Having Kids***
    2016 - Temple of the Dog, Bill Graham Civic Center Auditorium, San Francisco CA
    2017 - Eddie Vedder, Bourbon and Beyond, Louisville KY
    2018 - The Home Shows, Show 2, Seattle WA
    2019 - Eddie Vedder, Ohana Fest, Dana Point CA
    2020- Oakland Nights 1 and 2
    2020 - Ohana Fest
    2021 - Ohana Fest
    2022 - Oakland 1 and 2

    "Watch out for music. It should come with a health warning. It can be dangerous. It can make you feel so alive, so connected to the people around you, and connected to what you really are inside. And it can make you think that the world should, and could, be a much better place. And just occasionally, it can make you very, very happy." -Peter Gabriel
  • Given2Fly-FishGiven2Fly-Fish Posts: 804
    jacquelynca said:
    https://youtu.be/qSZYeDkdmI0

    @Given2Fly-Fish just posted on Eddies Facebook <3 
    Amazing version and thanks for sharing!!!  I love the choir it adds a whole new dynamic to the song.  I am definitely up for grabbing spaces up front... :)
  • jacquelyncajacquelynca Yay Area CA Posts: 372
    Given2Fly-Fish said:
    jacquelynca said:
    https://youtu.be/qSZYeDkdmI0

    @Given2Fly-Fish just posted on Eddies Facebook <3 
    Amazing version and thanks for sharing!!!  I love the choir it adds a whole new dynamic to the song.  I am definitely up for grabbing spaces up front... :)
    I know so good, made me tear up a bit. Ok let’s meet up in front, we’ll get in touch closer to the event!
    IG and twitter - @jacquelynincali

    1994 - Bridge School Benefit, Shoreline Mountain View CA
    *** 1995 - 2015 High School, College, Broke, Having Kids***
    2016 - Temple of the Dog, Bill Graham Civic Center Auditorium, San Francisco CA
    2017 - Eddie Vedder, Bourbon and Beyond, Louisville KY
    2018 - The Home Shows, Show 2, Seattle WA
    2019 - Eddie Vedder, Ohana Fest, Dana Point CA
    2020- Oakland Nights 1 and 2
    2020 - Ohana Fest
    2021 - Ohana Fest
    2022 - Oakland 1 and 2

    "Watch out for music. It should come with a health warning. It can be dangerous. It can make you feel so alive, so connected to the people around you, and connected to what you really are inside. And it can make you think that the world should, and could, be a much better place. And just occasionally, it can make you very, very happy." -Peter Gabriel
  • Given2Fly-FishGiven2Fly-Fish Posts: 804
    Sounds like a plan and hope everyone had a great weekend! 
  • hedonisthedonist standing on the edge of forever Posts: 24,524
    What a wonderful way to celebrate life.  Best thoughts to you and Julie.
  • Given2Fly-FishGiven2Fly-Fish Posts: 804
    hedonist said:
    What a wonderful way to celebrate life.  Best thoughts to you and Julie.
    Thanks for the kind words and positive vibes! 
  • LoujoeLoujoe Posts: 6,550
    Have fun!!! You just reminded me to go fly fish...

    never a bummer thread. Just a reality check for everyone. Thanks
  • HughFreakingDillonHughFreakingDillon Winnipeg Posts: 35,099
    absolutely love the positivity. hope you get your request and many fun adventures ahead! (but man, am I jealous you go to surf with ed!). 
    1993 Gimli Sun/Mudfest
    2003 Fargo
    2005 Winnipeg
    2011 Winnipeg
    2014 St. Paul




  • Given2Fly-FishGiven2Fly-Fish Posts: 804
    Loujoe said:
    Have fun!!! You just reminded me to go fly fish...

    never a bummer thread. Just a reality check for everyone. Thanks
    Nice, where do you fly fish?  Fall is my favorite time of the year to get out!
  • LoujoeLoujoe Posts: 6,550
    Dig the fall for the beauty and the winter is great too. NW New Jersey.
    I'm at the point where it's nice to catch one, but I dont really care. Just nice to become one with the line and river.
    Just started fly fishing a few years ago.
    Say hi to Ed!

  • Given2Fly-FishGiven2Fly-Fish Posts: 804
    Loujoe said:
    Dig the fall for the beauty and the winter is great too. NW New Jersey.
    I'm at the point where it's nice to catch one, but I dont really care. Just nice to become one with the line and river.
    Just started fly fishing a few years ago.
    Say hi to Ed!

    You have a great attitude for someone who has just started!  A lot of people get so focused on catching that they miss out on the experience...Would love the opportunity to say Hi to Ed for you ;)
  • dimitrispearljamdimitrispearljam NINUNINOPRO Posts: 139,079
    GOOD LUCK..ALL THE BEST
    "...Dimitri...He talks to me...'.."The Ghost of Greece..".
    "..That's One Happy Fuckin Ghost.."
    “..That came up on the Pillow Case...This is for the Greek, With Our Apologies.....”
  • Given2Fly-FishGiven2Fly-Fish Posts: 804
    dimitrispearljam said:
    GOOD LUCK..ALL THE BEST
    Thanks Dimi I appreciate it!  Always enjoy your posts... 
  • Given2Fly-FishGiven2Fly-Fish Posts: 804
    HughFreakingDillon said:
    absolutely love the positivity. hope you get your request and many fun adventures ahead! (but man, am I jealous you go to surf with ed!). 
    Thanks man!  It's gonna be pretty tough to beat that experience but it will be fun trying
  • vickisomoyavickisomoya Seattle, WA Posts: 184
    Hi Chip thanks for sharing your story, I think you can switch even this diagnosis with your outlook! If you vibe high enough to meet Ed how you did, you have more magic than you know!! I will be at Ohana too, hope to meet you and give you a hug...Peace and Love V
    take the reigns and
    steer us towards the clear here
    I know it's already been sung
    but it can't be said enough
    ALL YOU NEED IS LOVE

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