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Category Archive for 'Caregiver Thoughts'

“…every gift is exactly that, a gift.” – Maya Angelou What a lovely weekend and then extended two days with our daughter and her new husband here in Little Rock! Just what the caregiver ordered for Dave (and me!). I was so heartened when I called her and just casually said, “Hey! Any chance you […]

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“Don’t be pushed around by the fears in your mind. Be led by the dreams in your heart.” ― Roy T. Bennett, The Light in the Heart There will probably be a lot of “MishMash Musings” in the coming weeks leading up to Dave beginning his Abecma Car T Therapy, currently scheduled for Halloween. Perfect if […]

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“And in the end, it’s not the years in your life that count. It’s the life in your years.” – Abraham Lincoln Another stellar day here in Little Rock yesterday. We managed to get the car registered, and so now we are 100% legal! One of my fellow apartment dwellers gave me the “better” Motor […]

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“Love and compassion are necessities, not luxuries. Without them, humanity cannot survive.” – Dali Llama Every day here, I’m meeting and interacting with people in a profound and fun way. It’s like I’m in one giant neighborhood as I meander around from venue to venue. Often, I’m chatting with them while making a purchase or […]

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“You’re always on your way somewhere. The key is: find a way to be happy wherever you now are on your way to where you really want to be. (We’re speaking of the state of being you want.) It does not matter where you are; where you are is shifting constantly – but you must […]

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“Sometimes, the best way to help someone is to just be near them.” – Veronica Roth, Divergent Today I witnessed one of those moments between another couple in the throws of the journey of Myelomaville. My assessment was they are at the beginning of their journey, and I so wanted to go over and say, […]

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Acknowledge simple gifts. There are gifts all around us. I’m an old-fashioned road trip kinda gal, so I ordered an Adventure Edition of a road atlas and a full fold-out paper map of the USA for our road trip home. I’ve already put in several stops and come up with about nine days. Dave has […]

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“Gratitude is happiness doubled by words.” – G.K. Chesterton There is a comfort in routine and things predictable when dealing with our Myeloma crisis. Knowing when we need to go into the clinic and knowing we can just chill until we do.  Today I ran to the Vitamin Shoppe in N Little Rock. Then back […]

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“Medical science has proven time and again that when the resources are provided, great progress in the treatment, cure, and prevention of disease can occur.” – Michael J. Fox So in an effort to learn more about all of this, when I get the chance I ask a few questions of our doctor while we […]

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“Turn off the news and get out in the world. It is full of wonderfulness and humanity.” – Lori Puente What a whirlwind this particular episode in our reluctant Myelomaville adventures.  Our original plan was that Dave would come out and get his T Cells collected on September 13th. (Well really mid-August, but the pharma […]

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  “My heart gives thanks…” – Willam Stanley Braithwaite We had another productive day here today. The VW Dealership sent over a guy to sign the papers on the new car we purchased. I’ll share that fantastic story later.  Then we headed in to get some labs but were late, so we asked if we […]

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“How important is it?” This is one of the questions I’ve learned over my life that is worth asking. Many times I would have written a letter and ventured off into phone calls and wasted precious time setting them straight and taken my time and energy away from what Dave and I were dealing with. […]

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The Update

“Courage is fear holding on a minute longer.” – Gen. George S. Patton We have had bits of respite here and there after Dave’s relapse in year 5 or somewhere in that time frame. Then things just started being troublesome. Little annoying little things that Dr. VanRhee was watching and suspicious of. Each time, his […]

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  “The simplicity of it is, we’ve been living our life. Apparently so have many others. It’s a positive.” – Lori Puente, Myeloma Caregiver  I was noticing a few things in my stats and so like following bread crumbs, it took me to old haunts. Blogs. Websites. I began to wonder, “Oh yeah, how are […]

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Current Regimen

  “We thought that we had the answers, it was the questions we had wrong.” – Bono So to bring you up to speed a little more, we are on Daratumumab (Darzalex). The seemingly more popular of the new immunotherapies that came out November 2015. When we were told we would be moving to that, I was scrambling […]

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Changes

“Science without religion is lame, religion without science is blind.” – Albert Einstein I’m not a particularly religious person, but I am a devoutly spiritual person. I guess you could put me in the category of all the weird new age stuff, although I would reject that label. I just found my way with some […]

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  “Has anyone seen my brain? It ran off flailing and screaming about being overwhelmed this morning. I’d really like it back.” – Unknown   This week I’m dog sitting nearby at someone’s home (not my usual, they usually stay at my house). Anyway, it’s a good quiet time for me to ponder all the […]

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    “Change is the only constant, whether it’s in music, culture, dance or fashion.” – Sonu Nigam     First, I’ve missed you guys, although many of us have migrated over to FB and the various groups there that offer us information, hope, and inspiration.  I’ve felt for some time, as you may recall, […]

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ICER EPIC FAIL

“Hidden Agenda: an often duplicitously undisclosed plan or motive.” A recent “report” by a group called ICER (Institute for Clinical and Economic Review) has issued a 179 page “DRAFT” of a report attempting to evaluate Multiple Myeloma, it’s treatment protocols, drug cost comparisons and QALY (Quality-Adjusted Life Year see: Wikipedia Definition). 0

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Tomorrow

Tomorrow Dave begins his new therapy with Darzalex. We have to premed with Allegra, Singular, Benadryl and Tylenol. Dave is nervous, understandably so. Basically what I’ve learned is this side effects are infusion related. That means that the infusion itself is where the  side effects will present. Other than that, he should be fine. So […]

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