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Pacific Coast Highway (Not my photo)

 

“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 they doing, what’s she up to, etc.” And low and behold I discovered that quite a few peeps stopped their regular blogging like I did. Somehow, for some of us, who get a remission and maybe a medication reprieve, Myeloma seems to no longer be defining us or our daily life. It’s certainly a blessing to have that opportunity no matter how short or long it may be afforded us. Anyway, it was a bit heartening to know that they are out doing their thing, hopefully like we have been. 

So I grabbed some photos, a bit of a catch up if you will, to kind of give you a flavor of what’s been happening. Many of you from FB will already be aware, but some of you may not. It won’t be in chronological order most likely. (Trying to figure out where I last left off!)

So I’ll just list the photos and you’ll probably be able to sort it out. 

Made a beautiful Alpaca Shawl on my small loom, a hot air balloon excursion in Lake Tahoe, a Junior High & HS Girl’s meet up in Tahoe and Yellowstone, Dinner with Dave in Tahoe, a new dog, a Jack Russell Terrier (It’s Montana’s – Dax, Daxter, Daxteroni), a road trip, drove Montana across the country in a Honda pulling a small U-haul, Dave and Paula finally meet in person at Rosehaven (looking at a foal), new wedding rings for Dave and I, Hudson and Angelica’s wedding rings (Hudson’s was my father’s and then Dave’s and now his, it’s special), the wisteria Hudson planted in 2008 just gets prettier every year, I visited The Woolery (a weaving store) I order from a lot while I was in Kentucky, some crochet Chemo Caps, Hawaii (Maui), a Myeloma meet up in Arkansas with Bob and Bonnie (2015), a HS Reunion (I was on the committee!), my Tennesee cousin Jean visited me in Old Town Sacramento (Pony Express), a quick overnight visit with one of my dearest friend’s daughter, Leola, who also has completed her PhD (Smartie Pants), STEVIE NICKS CONCERT!!!! and THREE UK Basketball games at Rupp Arena in Lexington. 

 

“As you walk and eat and travel, be where you are. Otherwise, you will miss most of your life.” – Siddhartha Gautama

 

Current Regimen

©Dmitry Sunagatov DNA Spiral

 

“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 to find some data. Dave always understandably gets worried about what this new drug will be doing to him NOW! Anyway, as luck would have it, another caregiver, Bonnie, whose BF, Bob, was already on it, steered me to a podcast with the researcher who developed it. So as I was listening, it was so helpful and concise that I stopped and made Dave sit down with me and listen to it. We had his first infusion the following morning. Anway, everything went well, and I continued to go with him for some time until we had all the kinks sorted out. It was so new that I just couldn’t leave it to our local infusion nurses. They aren’t specialists in Myeloma. They simply administer chemos and treatments to all the various patients that come in. So while they are knowledgeable, there is also a rote-ness about what they do. It’s not knowledgeable about Myeloma by any stretch. So it’s up to me to help fill in the gaps to make sure Dave is as comfortable as possible.  Continue Reading »

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 help here and there on things that seemed to align with my way of thinking. I look for practical applications that will help me in life while embracing a spiritual viewpoint about it all. So I would agree with Albert here. I think the two go hand in hand and don’t need to negate one another – generally speaking. Continue Reading »

The List

Things to do list

 

“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 things I need to take with me to Arkansas. We are flying, so I have some limitations. I was sure I had prepared a “list” somewhere on this blog in the past to help others in treatment away from home. I found it and then discovered there was a video link for hand washing from the CDC I had put in the post that no longer worked (I fixed it). Sigh. I’ve noticed that links seem to get broken over time as things get updated and improved. It’s frustrating. So if you encounter that stuff on my blog, my apologies. (I’ve definitely noticed on the older links from this blog I posted on my Riding the Wave FB page, have broken!)  Continue Reading »

Where do I start?

 

 

“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, that I needed to get back to my blogging. But life has gotten in the way, in a good way, and that’s kind of A-OK with us. So let me try and bring you up to speed on a couple of things quickly.  Continue Reading »

imf-tallTake Action: Let CMS Know that ICER Recommendations are Bad for Myeloma Patients

IMF has set up a great response with talking points and necessary links for you, the patient, the family, the caregiver, the nurse, the doctor, to make your voice heard on the ICER recommendations as well as how it will specifically be impacting Medicare patient’s coverage.

Please, wander over, it’s short and sweet. We need to have a strong voice.

IMF Action Center Link

My Previous Post with additional links at the bottom

 

 

ICER EPIC FAIL

sledgehammer-clipart-Sledgehammer1

“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).

Continue Reading »

image“Success is the sum of small efforts, repeated day in and day out.” – Robert Collier

Well, it’s Easter Sunday and we are at the infusion center getting the second darzalex infusion, and honestly, I couldn’t be happier about it. Two down before he leaves for his business trip tomorrow morning and a short visit with his Mom and Dad before he comes home. Continue Reading »

Tomorrow

Inpiring RedwoodsTomorrow 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 why up I up at 3:30 in the morning? I’m obviously worried. Despite everything I’ve read I’m worried for my guy. He should be fine, but still we caregivers worry.

I’ll promise to let you know how it pans out. Pray for us.

 

Photo on 4-27-12 at 9.42 AM #3

“Lori! Your voice is missed! – Pat Killingsworth

Before I launch into what is happening with Dave and I, I have to spew my pain at the loss of Pat Killingsworth. OMG! How can this happen? Pat and I had a very tumultuous beginning in our friendship. He was anti SCT and very ANTI LITTLE ROCK! He and I had MAJOR SPATS! It was private and intense. But in the end he sent me his newest copy of his MM Book and in it a note said, “You convinced me. I added a section about the treatment in Little Rock.” I came to love Pat. We met up for my first myeloma support group in Spring Hill, FL. My in-laws live there. I contacted him that we would be close and hoped we could meet in person. He invited me to the meeting and then pretty much bush whacked me with introducing me and asking me to tell our story. I realized as I was sitting there, that I could tell our story, so I did. After that, we met for breakfast at a local diner. He was very generous and kind to Dave, even though it was clear that Dave had very little understanding of his disease. This was a major problem for Pat, not Dave, just in general. He and I would go at it about this point. I would explain to him that each “couple” has their own method of dealing with disease. For us, it was me figuring it out. It didn’t mean Dave was uninformed. It just meant that it what was worked for us.

Continue Reading »

Weddings and …

weddingbells

“Love does not consist of gazing at each other, but in looking together in the same direction.”  ~Antoine de Saint-Exupery

Almost three years ago our wonderful nephew and his relatively new girlfriend found themselves in that situation that is as old as time, unexpectedly pregnant. Both still at the beginning of their college experience, neither family having yet met, it was one of those moments that could have gone really badly.  I am very happy to say, it did not, quite the opposite in fact. A fact that makes me incredibly proud and happily weepy. Continue Reading »

The Gifts in Life

Christmas-gifts

“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 I seem to do this regularly, not needing the new year milestone celebration, I’m mindful of the things going on in my life, my friends, and my family.  Continue Reading »

Mind, Body, Spirit

DSC_0105“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 was quite surprised to have found this quote from C.S. Lewis this morning. Just goes to show that often our thoughts and conclusions align with many others in the world and are not unique, but they are unique to us at the time of our realization. I think it’s better that way. To sometimes discover things on your own, from your own observations. But it doesn’t hurt to have them validated by others who have come to the same way of thinking. Continue Reading »

Screen Shot 2013-12-20 at 12.53.57 PM

“Dr. Damian Green, a myeloma expert from Seattle Cancer Care Alliance, discusses the role of transplant in myeloma and the continuous refinements to induction therapy. Dr. Green speaks about ongoing studies in myeloma, how pre-targeting radioimmunotherapy might be utilized, and explores the potential to use novel therapies prior to transplant to increase the rate of success.”

Andrew Schorr’s Patient Power website and interviews of specialists and coverage of conferences continues to be a great source of current information, opinions, and data on Multiple Myeloma, it’s treatments, breakthroughs, results.

Here is a link to one with Dr. Damian Green.

I encourage you to sign up for email updates.

 

Patient Ambassadors

Monterey Lone Tree

Monterey Lone Tree

“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 join this group for the holiday meeting by Pat Killingsworth. Pat and I had had correspondence but had never met, so I was excited to go. I had never been to a “support group” before. Dave, unfortunately was experiencing a really bad cold and you know the rules. Sick people stay home! So I went solo and had an amazing evening with others battling this disease. It was very inspirational and uplifting and I made new friends. Always a good thing. Continue Reading »

Mourning Milestones

serenity_forest“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 holidays being a particularly difficult time, I thought perhaps we could express it out loud in the hopes that others will find some solace in the camaraderie. Continue Reading »

So Much Good Stuff!

snoopydance

“What you spend years building may be destroyed overnight. Build anyway.”

It surely has been a long time since I have posted! Some of us have stayed in contact on FaceBook in one of the MM groups and so I haven’t felt overly disconnected, but disconnected nonetheless. What can I say, but we are doing extremely well. The kids are pretty grown up, self sufficient, enjoying their lives. Dave and I are back to the grind so to speak, but with interesting changes. We continue to be happier than we have been in our three plus decades together. Dave continues to work entirely too much – that didn’t change. What did change is he enjoys it more. Who’s to say he wouldn’t have anyway being more “mature” at this point. Or maybe it’s the company, his colleagues, the work itself? I don’t know, but it’s just nicer, even if I wish he could manage it a little better. What has changed is that he can truly leave it and enjoy our time together or visits from friends and family. He doesn’t have that distracted “I’m thinking” look he used to have no matter what we were doing. It used to annoy the hell out of me. 🙂 Continue Reading »

Little Rock

“Research is creating new knowledge.” – Neil Armstrong, Astronaut

Dr. Usmani, a researching physcian at UAMS in Little Rock, Arkansas, in the Myeloma Institute did a brief overview of the retrospective comparative study he was presenting at the conference on Total Therapy 3a and 3b regarding the newly diagnosed High Risk Multiple Myeloma patients. Continue Reading »

Monterey Lone Tree

Monterey Lone Tree

“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 chemo, more “new” drugs, my shoulders sag just a little.

Continue Reading »

Attitude

“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 chatting with patients and caregivers about this because I would never, ever want them to feel in anyway deficient. That somehow if they just prayed more, believed more, were more positive they would have a desirable response to their treatment. It totally defeats the whole idea of the concept if it makes someone feel inadequate. Continue Reading »

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