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Category Archive for 'Caregiver Thoughts'

  “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 139 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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The Gifts in Life

“Let us be grateful to people who make us happy, they are the charming gardeners who make our souls blossom.”  – Marcel Proust The new year, following holiday festivities that sometimes seem to never end and have angst and stress for some, always brings about a time of reflection for me. While later in my life […]

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Mind, Body, Spirit

“You don’t have a soul. You are a Soul. You have a body.”  – C.S. Lewis I use to ponder this as a pre-teen, in my confusions rolling around in my head trying to understand a Sunday School lesson, or a conversation with another pre-teen about God. I had come to this conclusion and actually […]

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“Instruction does much, but encouragement everything.” – Johann Wolfgang von Goethe Last night Dave and I attended a MM support group holiday meeting near Spring Hill, Florida, complete with a delicious catered meal and a sponsored patient ambassador presentation. Two years ago when I came to our in-laws for the holidays I was invited to […]

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“Each of us has his own rhythm of suffering.” – Roland Barthes We have lost many this year to MM and other cancers or health issues. Having conversations with my many friends, both personally and via the net, one thing comes through loud and clear, getting through milestones and anniversaries is very hard. With the […]

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“A piece of me goes with them.” – Lori Puente We lost another giant soul in Myelomaville last week (Hanna – Margaret’s heartfelt tribute). Some of us knew it was coming, but it still hits you hard. Every time this happens I feel sadness and meloncholy. Each time someone relapses and goes back for more […]

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“Attitude is a little thing that makes a big difference.” Winston Churchill This continues to be a controversial topic. There are some scientific studies and research that have been going on forever on this. It’s a difficult test to run and quantify accurately in a way that is definitive.  I tend to be cautious when […]

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Musings

“There are things we don’t want to happen but have to accept, things we don’t want to know but have to learn, and people we can’t live without but have to let go.” – Unknown First of all, we had another stellar report from our recent post maintenance therapy check up in Arkansas. David continues […]

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“Maybe Lori will take a break from her Myeloma Holiday and chime in.” – H.O. Indeed! I would have never thought there could be such a thing as a Myeloma Holiday. Do you ever get away from it? Well, for some of us, yes. For many, sadly, no. Thankfully Dave and I fall into the […]

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Myeloma Cure Panel broadcast We had a very informative Cure Panel discussion on myeloma on Blogtalkradio with Dr. Parameswaran Hari as myeloma expert on 25th September at 4:30 pm EST.  The show was co-hosted by Gary Petersen and had over 40 live callers. On the panel we had Pat Killingsworth, Matt Goldsman, Keith Virgin, and Lori […]

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Andrew Schorr catches up with Dr. Bart Barlogie in Barcelona at a conference to ask the question, if emphasis is being pushed to make Myeloma a chronic disease is cure still a priority? An excellent interview that of course has some of the scientific complexities that make it difficult for the average layperson to understand, […]

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MIA, AWOL, APB!!!!

“Preaching for life changes requires far less information and more application. Less explanation and more inspiration.” — Andy Stanley MIA: Missing in Action AWOL: Absent With Out Leave APB: All Points Bulletin I didn’t intend in any way shape or form to be absent from you for so long! I have much to catch up on […]

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“Let no one think that flexibility and a predisposition to compromise is a sign of weakness or a sell-out.” – Paul Kagame The two things that helped me through this ordeal (and other challenges in my life) is flexibility and adjusting my point of view. Karen touched on this in her insightful comment on my last […]

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“Superman’s not brave. You can’t be brave if you’re indestructible. It’s every day people, like you and me, that are brave knowing we could easily be defeated but still continue forward.” – Unknown In my last post regarding Dave’s exercise update I mentioned that our trainer is encouraging Dave to revitalize and renew his love for […]

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