tag:blogger.com,1999:blog-6542378222548786727.post4555147130987112420..comments2024-03-19T00:12:47.570-07:00Comments on Julies Myeloma Moments, Musings and Living Life with a Bucket List : Pity Party TimeJuliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-6542378222548786727.post-75905459015029151852020-12-30T11:55:19.222-07:002020-12-30T11:55:19.222-07:00Thank you Jim. Very sweet of you! I appreciate tha...Thank you Jim. Very sweet of you! I appreciate that you continue to read my blog of raw thoughts and realities, but please don't take on my suffering along with yours. We both will pick beautiful flowers, and for me when I am outside at night, I too pick stars and talk to the Universe, and ask WTF happened to my life LOL. It's a beautiful Earth and Universe, and I'm not ready to leave yet... Take care of you, and I hope 2021 is a good year for you!Juliehttps://www.blogger.com/profile/08773473100504931050noreply@blogger.comtag:blogger.com,1999:blog-6542378222548786727.post-77437995244241056912020-12-27T06:42:34.453-07:002020-12-27T06:42:34.453-07:00Julie, each time I read your newest post, I try to...Julie, each time I read your newest post, I try to take some of your suffering onto my own shoulders. "You pick the flower on Earth and you move the farthest star." Not just philosophy...Obnoxious Jimhttps://www.blogger.com/profile/10075448877501822219noreply@blogger.comtag:blogger.com,1999:blog-6542378222548786727.post-54978445757878991522020-12-23T14:07:06.492-07:002020-12-23T14:07:06.492-07:00Thank you Bonnie for continuing to follow my story...Thank you Bonnie for continuing to follow my story even after your tragic loss. 2020 sure threw us some major challenges, even beyond Covid Corona! My heart is always with you, and I will email you asap xoxoJuliehttps://www.blogger.com/profile/08773473100504931050noreply@blogger.comtag:blogger.com,1999:blog-6542378222548786727.post-18170036037805386252020-12-23T14:05:45.475-07:002020-12-23T14:05:45.475-07:00Hi Pattie, thank you so much for following my stor...Hi Pattie, thank you so much for following my story and commenting. Yes, this MM roller coaster is nuts, but I do get relief on steroid days, but the crash is awful. So one day at time, and hoping that something I am doing is pummeling my IGA myeloma and the mutated Extramedullary myeloma. I'm headed for labs now, so I'll know in a few days my status... hoping your hubby is doing ok, and I will email you back asap xoxoJuliehttps://www.blogger.com/profile/08773473100504931050noreply@blogger.comtag:blogger.com,1999:blog-6542378222548786727.post-69858222165342949752020-12-23T14:02:39.065-07:002020-12-23T14:02:39.065-07:00Hi Ellen, thank you so much for following my story...Hi Ellen, thank you so much for following my story, commenting and suggesting. Please don't take offense, but what you write and suggest is exactly what I will "not do" and am "afraid" to do. I know of several who have passed from doing the CarT, as it so mutated their myeloma and system. I am afraid of Trials, as the Patient just doesn't have much control of what they are receiving. And the new meds you mention, are good, but for me, the side effects outweigh the "good results", and I have MM friends on them, that have had the "bad side effects". Buttttt, I may get to a point where I will try the new ones, once I go thru all the combos of the oldies. <br />How are you and yours doing? Such a crazy crazy 2020! xoxoJuliehttps://www.blogger.com/profile/08773473100504931050noreply@blogger.comtag:blogger.com,1999:blog-6542378222548786727.post-86809352613132909542020-12-23T13:58:24.584-07:002020-12-23T13:58:24.584-07:00Hi Mary, yes you are right, and I should ask for m...Hi Mary, yes you are right, and I should ask for more help. My adult kids, and close friends offer all the time, but I just want to feel "normal" lol, so I just keep being silly Independent. I am very safe with what I do, but I do need more help like I haven't over the years. Just so hard to accept my decline, and of course the Dex steroids fake me out lol. Thank you so much for your sweet comments, and following my crazy life story. Tell me your husband's story, if you are ok with that. Knowing what my MM warrior buddies have gone thru is very helpful to me. Thank you for writing! xoxoJuliehttps://www.blogger.com/profile/08773473100504931050noreply@blogger.comtag:blogger.com,1999:blog-6542378222548786727.post-10605720536547311812020-12-22T16:17:07.765-07:002020-12-22T16:17:07.765-07:00ππππBonnie Pankhursthttps://www.blogger.com/profile/00127212441252357613noreply@blogger.comtag:blogger.com,1999:blog-6542378222548786727.post-72970850877960121912020-12-21T21:27:12.599-07:002020-12-21T21:27:12.599-07:00Julie so sorry your sad my hope for you this holid...Julie so sorry your sad my hope for you this holiday season is you find some relief and comfort in family and your pets. Youβre like me we need to take one day at a time I find that helps me cope. Merry Christmas Pattiehttps://www.blogger.com/profile/00526660655345362359noreply@blogger.comtag:blogger.com,1999:blog-6542378222548786727.post-36386087324242235162020-12-21T16:32:40.848-07:002020-12-21T16:32:40.848-07:00Julie,
Do you qualify for any drug trials? I am ...Julie, <br /><br />Do you qualify for any drug trials? I am thinking of the Car-T trials, specifically. They seem to get some really good results for people who have had many lines of treatment. Also, that new drug, the one that pairs your own enhanced T-cells with a targeted chemo - Blenmab? Maybe ask your dr. about it. I say a prayer for you everyday. Please explore whatever new treatments are available. There's so much new stuff. What about Isatuxamab or Selenexor? I think they are new too. Hang in there, Julie, my myeloma sister! I hope you can get some enjoyment with your family during the holidays. I say we should all get an extra year because 2020 was such a disaster! <br /><br />You are brave and wonderful. Keep us posted. <br /><br />Xoxo, Ellen<br /><br /> Perhaps you need neupogen or procrit to boost your reds and whites. ellen goldsteinhttps://www.blogger.com/profile/01599486948859630439noreply@blogger.comtag:blogger.com,1999:blog-6542378222548786727.post-29970239042024443352020-12-21T08:05:45.357-07:002020-12-21T08:05:45.357-07:00Julie - now is a good time to let someone drive yo...Julie - now is a good time to let someone drive you to labs and appointments. My husband was just like you - so strong and independent. But I now wish he had let me take more care of him especially when his bloodwork numbers got so low. Let friends and family help you - you are carrying a huge burden. You are doing great though and I'm pulling for you!Mary Gallinahttps://www.blogger.com/profile/18197892308047347056noreply@blogger.com