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In appreciation of my MPIP peeps and ratties

Forums General Melanoma Community In appreciation of my MPIP peeps and ratties

  • Post
    Bubbles
    Participant

      I will never be able to fully express what your outpouring of support has meant to me over these past weeks.  You have all been a light in my darkness.  Your messages on the board, my blog and via email have warmed my soul, brought sweet tears, and made me laugh.  These are no small things!  I have also been enjoying a beautiful bouquet!  While I am unsure where to direct my thanks specifically, it has been a lovely treat.

      MPIP is indeed a special place because of each of us!!  Yes, just as in families and the best communities, we each have our own special niche.  It often falls to Janner to help coax the newly diagnosed down from their perch with grace and patience, simultaneously walking them through their path report with skill.  I have seen many more of you stepping up here as well.  Yes, I have long been the resource for "data explained", researched "one more option" for my dear Stage IV peeps in need, and certainly pursued my various soap boxes over the years….

      + YES!  Immunotherapy works in the brain!!!!!!!!!!!!!!
      + YES!  People deserve anti-PD-1 even though ipi is available!
      + Adjuvant care is real and valuable and needed!!!
      +YES! YES!  YES!  Radiation and immunotherapy work better together and therefore can and SHOULD be administered together!
      + YES!!!  You can and SHOULD treat side effects of immunotherapy, even with steroids if needed.
      + Immunotherapy takes time.  Be patient with the patient.

      You've heard them all!  Over and over and over!!!!  But, the good news is ~ I almost don't have to say them anymore!!!  In the beginning, when the world was new and there was no treatment for melanoma (anytime before 2011!!!!) and the years immediately following, it was a battle to get local oncs to provide access to the care we gradually had coming on line!  But thanks to all of you….we've come a long way baby!!!

      As to researching help for those in need…there is no one who can find the right expert, talking about the right thing, at the right time and HOOK YOU UP!!!!..better than our dear Edster!  He may be only a mouse, but he is a keeper!!!  Eric W is a researcher extraordinaire and has become a force to be reckoned with in parsing trial exclusion criteria.  Partially due to their own travails, Brain P, Bill, Mat, Gary, and many others have become excellent advocates and experts at outside the box treatments…TIL, immunotherapy combo's…sharing what they've learned with skill.  I think we all need to work to make sure that intralesionals (like PV-10) are employed when they are an option, given the data and responses like those of Texmelanomex!!  (Yes, I know.  I'm still pushing!)

      Mark_DC, Niki (Cancersnewnormal), Susan (Casagrayson), Sabklyn, and so many others give out thorough, intelligent caring advice daily.  Julie (Julie in SoCal) {Who has damn sure been through more than her fair share!!!!!} and Jenn (Jennunicorn) do the same with some good intell for those seeking adjuvant care.  We are truly blessed to have saints among us ~ Rob (Adriana Cooper) and Maria (maperny) ~ still here for us, holding us up in spite of their own great personal losses.  And while all voices and hugs come through the internet (Just like those t cells in the brain!!!!  I'm telling you!!!) some like those of Scooby and Melanomamike shoo the darkness from every corner!!!!

      And, since there is no Camelot, we do need our deputies who keep our world productive and supportive.  Perhaps, because he is a mouse, The Edster can smell at rat at 20 paces!!!!  And while we love and admire ratties, folks here to cause strife, mislead, sell us "REAL LIVE COUNTERFEIT" – are not welcome.  Mike, Beth, NSNewf, and many others have proven their dedication in keeping this board a helpful, caring, and safe place.  You can bet that any number of our peeps will be ready to answer any newly arrived crackpot, touting, "When you imbibe only blue M&M's, taken three at a time, the third Wednesday of the month, just as the sun sets below a lone cloud…your melanoma will be gone!!!"  …or any other sometimes more legit sounding shenanigans!!!  I mean to each his own, but we have to protect those still uninformed and desperate among us!  But, y'all don't need me to tell you that!!!

      And that's the point isn't it?  Y'all got this!!!!  All of you I noted and the many, many, many other dear peeps I have not (though you are bright in my mind!!!!) ARE MPIP!!!!!  It is just that simple.  YOU are what makes the forum valuable in ever so many ways to ever so many peeps across the globe!! Keep up the good work.  It means more than you will ever know. 

      This is not goodbye.  Lord knows, I could be in a rant on the board tomorrow!!!!  You all know I have never been one for secrets.  So, I wanted all of you who had interest to know that I have not dropped off the planet.  I will still be around.  You can always reach me via this board or my blog.  But, I have a long way to go…  And I'm not even sure where I am going.  That doesn't mean I won't get there!!!!  But, it might take me a minute.

      You have no idea the kick it has given me to see "melanoma peeps" and "ratties" and "Melanoma sucks great big stinky green hairy wizard balls!!!!" become part of the vernacular!!!!!  I have loved every "Eeeeecccckkk, eeeeecccckkkkk. ", dear John!!!  It has been a rare privilege to be a trusted friend in each of your lives.  Much love always, les
       

    Viewing 12 reply threads
    • Replies
        Raeofsonshine
        Participant

          And I came here this morning to post and get amazing advice from such awesome people and to see this and read back and see what happened to you.  I am SO SORRY and this is truly heartbreaking and unfair.  You are superhuman when it comes to Melanoma and then this nasty newbie shows up and just annihilates you.  As usual your demander is inspiring and humorous.  Thank you for your wealth of knowledge over the years and more so that you continue to be here when you have so much that have to deal with now.  I don’t know you from  Adam and am thinking you of often.

            Raeofsonshine
            Participant

              DEMEANOR – but I'm sure you got that. 🙂

            jennunicorn
            Participant

              Celeste, your wisdom, dedication, and support has been invaluble to ALL of us on this board. You've got this new weird crazy wtf chapter that life just through at you and I don't blame you for taking a break from the melanoma madness. You'll come out the other side of this wild ride a stronger and fiercer woman (if that's even possible! #WonderWoman) We love you to pieces, thank you for being AMAZING! 

              MichelleRHG
              Participant
                Thinking of you!
                Johnjk04
                Participant

                  You are definetly back. Keep going young lady. Your posts continue to inform / amaze me.

                  e keck kce.

                  Momofjake
                  Participant

                    Celeste, 

                    Much love and many prayers from us. Yes, this board changes/saves lives. You have talked me down. I sneak peeks on bad days. And this month it has changed everything. Brian P sat and talked with Jake in person. No accidents…we were both in Los Angeles. First person Jake has ever talked with. And now they are opening Brian’s trial for Jake if he meets the genetic markers. Just from here. Our board. Our lifeline on the hard days. You have been at the heart of it. Thank you❤️

                    We love you! Get better!!! We always keep hope!!

                    Kerri

                     

                    jenny22
                    Participant

                      OMG Celeste…..I haven't been on here for a while and just read your recent news…..What a kick in the teeth!!!!!  I am so sorry to hear what you've been through….

                      Of course, as everyone else has said, your dedication to this group has been amazing and such an immeasurable source of support.

                      We will all be thinking of you and sending you the best, and most positive vibes out there…

                      I hate that you have to go through this at all, much less AGAIN, but i look forward to you getting to the other side!!!!!

                      All my best,

                      Jenny

                      Jubes
                      Participant

                        Can’t believe you’re still worrying about us Celeste! Take care of yourself and know we’ll be here muddling through when you get back Anne-Louise xxx

                        WithinMySkin
                        Participant

                          You have a whole new journey ahead, Celeste. That doesn't make your 'old' melanoma peeps any further away – we will always be here for you!! So take your minute…take an hour…find your new path and keep us updated along the way! Sending you all the mushy and healing vibes – Lauren

                          MelanomaMike
                          Participant
                            Hi Bubbles! Thank you for the ShoutOut, means alot, im just so glad you bounced back as best you did from all that, i know its part of our lives to jump hurdles, climb hills and swim currents & sometimes very little opposites like coasting down hills, swimming calm waters & well, dont have anything for the hurdle one but, you get it…
                            Quick Update: did a CT Scan this passed Monday, first one since starting ipi/nivo back in late May. I do nivo #6 this Friday i imagine then ill have CT report then…ill definitely post its findings!!..take care sis!, Slan!
                            Coragirl
                            Participant

                              You are the best, I don't think I would have made it through the first few weeks of my husband's stage 4 diagnosis without your advice and kind words. I hope we can help you to feel better when your down or having a bad day. You will get through this because you are a strong, amazing woman.Take care you will be in my thoughts and prayers.

                              casagrayson
                              Participant

                                Aw, Bubbles.  I only repeat on this board what I have learned from you and the others who dig deep to find the answers.  I came here to be "talked down" from the panic rafters when my husband was diagosed, and then just hung around because I became so fond of the people here.  And who wouldn't be fond of people like you, who in the midst of a crazy medical ride think about US!  You, my dear Celeste, rock!

                                Just like in every other part of life, it does "take a village".  I'm glad everyone here is part of mine.

                                You truly are the bravest, strongest woman!  I still remember your response to my first few posts.  At that time you saved me.  Then you continued to do so.  Please now save you.  After all – we need you.  Love, peace, happiness and good wishes to you.  We will be here when you get where you are going.  Most of all – thank you.

                                Jennifer

                                Jahendry12
                                Participant

                                  Was sorry to log in and see what you are going through.  Many people out there praying for you and thinking of you.  <3  Hang tough!

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