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
And in case some of you aren't sure what it means to be part of this amazing family, here are just a couple of examples:
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