Riding The Wave – Multiple Myeloma

Recent Study on MM Fatigue

Jul 16th, 2011 by Lori Puente

“Fatigue is a daily lack of energy; an unusual or excessive whole-body tiredness, not relieved by sleep.” – Chemocare.com

A great article at The Myeloma Beacon on a recent study (by Nurses, of course!) regarding fatigue.

As I was reading this article, which goes a bit round and round, I was feeling a bit validated about my earlier post on this subject AND I was impressed with the fact that it was done and by Nurses! Kudos NURSES! You truly are on the front lines and GET IT!

The fatigue is profound and the causes are multi-faceted and unclear, but all related.

In order to catch my “related posts” on this you will need to click on the post headline to take you to this post in isolation and then the related posts will show up at the bottom.

Tags: fatigue study, The Myeloma Beacon

Posted in Caregiver Thoughts, Multiple Myeloma | 3 Comments »

Winning Video at Canne

Jul 16th, 2011 by Lori Puente

This is cancer related and is delightfully sweet.

Posted in Misc | 1 Comment »

MishMash – 2

Jul 15th, 2011 by Lori Puente

Ali Commission

“The thing that most forget while dreamily looking off into the horizon for the ship of their dreams is that such ships never sail in, but are actually built beneath their very feet.” – Notes from the Universe (Mike Dooley)

Boy sometimes I have just a flurry of MM activity to write about and then, not so much. Not that there isn’t stuff going on, but others have picked up the ball quite well or I don’t have anything to add. Even though I’ve been very busy doing all manner of fun things, I have been keeping up with all the usual suspects of up-to-date news. I have been falling behind terribly on a couple of commitments and will be working to get those things done.

Tags: anna's yarn shoppe, Kids, Multiple Myeloma Support Group (non-profit) FB, scarves, vogue show

Posted in Misc, Our Life | 2 Comments »

MishMash

Jul 8th, 2011 by Lori Puente

Holiday Neck Jewelry for Diana

“The doors we open and close each day decide the lives we live.” – Flora Whittmore

I haven’t had much to espouse about on the MM front, though that is not to say that a lot doesn’t continue to happen – good and bad.

I enjoyed Sean Murray’s recent posting at The Beacon. Just to validate his Yellow Beatle scenario, my next door neighbor told me last year that a childhood friend of hers from Utah has MM, 30-ish. Then this morning my other neighbor on the court told me that her relative’s, relative’s, stepfather has MM, 60-ish. It sure doesn’t make you feel like its such a rare disease when you enter into the vortex of Myelomaville. Continue Reading »

Tags: Blue Heron Hand Painted, Dena Ingalls, Heirloom Weaving, Meridian Jacobs, MyelomaYoureloma, Robyn Lynde, sean murray, The Myeloma Beacon, Weaving

Posted in Misc, Multiple Myeloma, Our Life | 3 Comments »

Napa Excursion

Jul 3rd, 2011 by Lori Puente

“Other things may change us, but we start and end with the family.” – Anthony Brandt

What a lovely family day we had on our first ever trip to Napa. It was a late start, but we enjoyed what little time we had there. We had lunch at Mustard’s Grill. Which grows almost all it’s food at their garden in the lot next door. While we were waiting for a table (an hour and a half!) we did some wine tasting next door at Constantino’s. We immediately confessed to our “newbee” status in the realm of wine and wine tasting. Our wine steward was adorable and totally up for the challenge. We purchased three bottles of wine and I wanted a cool cookbook, D.I.Y. Delicious, Recipes and Ideas for Simple Food from Scratch.

Then we went to Beringer Winery which had unbelievable grounds, and an 1870’s mansion with beautiful stained glass and woodwork inside.

Photos below, as always, click to enlarge. 🙂 Continue Reading »

Tags: Beringer Winery, Constantino's Winery, Mustard's Grill, Napa Valley

Posted in Kids, Our Life | 2 Comments »

Family Visit

Jul 2nd, 2011 by Lori Puente

Fireworks Booth Elk Grove

A rose can say “I love you”,
orchids can enthrall,
but a weed bouquet in a chubby fist,
yes, that says it all.
~Author Unknown

It’s the 4th of July holiday weekend here in the States. Our Independence Day celebration around the country. Fireworks, American Flags, barbecues, family gatherings, children in awe and animals hiding under the beds. We love our 4th of July here and hopefully are reminded of the generations of men and women who have served in our Armed Forces to maintain and secure the freedoms that we enjoy.

Our “Baby Girl”, Montana called over a week ago and announced she had 5 days off from work and wanted to come see us! Continue Reading »

Tags: 4th, fireworks, Visit

Posted in Kids, Our Life | No Comments »

Myeloma Article on Collection

Jul 1st, 2011 by Lori Puente

“Twenty-one percent of patients required a second course of these stem-cell mobilizing agents because they failed to collect the target collection number of four million stem cells per kg.”

Myeloma Beacon article here

I admit I get VERY FRUSTRATED when I see articles like this that I know generally, doctors out there, occasionally treating a Myeloma patient will read and totally, utterly, misduplicate it’s ramifications.

Tags: Revlimid, Stem Cell Collection, thalidomide, The Myeloma Beacon

Posted in Multiple Myeloma | 8 Comments »

TED Talk – E-Patient Dave

Jun 29th, 2011 by Lori Puente

Hat Tip Hanna (Thank you Hanna!)

I would put Dave Emerson in this category. His story is amazing.

Enjoy and feel empowered.

Tags: Patient Empowerment, TED Talk E-Patient Dave

Posted in Misc | 2 Comments »

Tear Jerker Movie

Jun 27th, 2011 by Lori Puente

“You know what your problem is, it’s that you haven’t seen enough movies – all of life’s riddles are answered in the movies.” – Steve Martin

I don’t know that I agree with that entirely, but sometimes you do find enlightenment in a good movie, a great story, a book, song, a play, poetry – the Arts.

Tags: lived life, Movie, regrets

Posted in Caregiver Thoughts, Misc | 3 Comments »

Myeloma and Vaccinations

Jun 26th, 2011 by Lori Puente

“Dr. Elias Anaissie of the Myeloma Institute for Research and Therapy at the University of Arkansas for Medical Sciences presented these guidelines at the International Myeloma Workshop (IMW) in Paris last month.” Excerpt from The Myeloma Beacon (click link for article)

Tags: Dr. Anaissie, MIRT, Paris !MF presentation 2011, UAMS, Vaccination recommendations

Posted in Multiple Myeloma | 12 Comments »

“What Faith Can Do” – Kutless

Jun 25th, 2011 by Lori Puente

Hat tip Angie Murray

Tags: Kutless Music Video

Posted in Misc | 5 Comments »

Do you have those days…

Jun 22nd, 2011 by Lori Puente

Hand Painted Twisted Rayon, Chocolate with Ribbon Highlights

“Nothing contributes so much to tranquilize the mind as a steady purpose – a point on which the soul may fix its intellectual eye.” – Mary Shelley

Some days I find myself feeling a bit lost and lazy. Lord knows I have plenty that needs to get done around here but I don’t much feel like doing any of it. I hate days like this and generally it isn’t just ONE day! That’s probably the worst part. It’s fine to blow off a day here or there, but when it lingers, seemingly endlessly, I find myself feeling “pooky”, spiritually, mentally.

Tags: pooky

Posted in Caregiver Thoughts, Misc, Our Life | 8 Comments »

Unwanted Compassion…

Jun 20th, 2011 by Lori Puente

“The I in illness is isolation, and the crucial letters in wellness are we.” – Unknown

I very recently learned a friend that I don’t talk to often has cancer. She has known a long time and told no one in her family. She is now undergoing chemo and had to tell some of her family. She is angry and bitter and no one is to know under any circumstances. Of course you know how this goes. Those who do know are so burdened by their grief they must talk to someone.

Tags: bitterness, Cancer, Compassion, control, unwilling to tell

Posted in Misc, Our Life | 8 Comments »

Father’s Day

Jun 17th, 2011 by Lori Puente

Our last camping trip and photo together (the young boy was riding around our campsite on his minibike driving my Dad crazy, so he pulled him into "our game" instead of having him ruin our time together.)

“Any man can be a father, but it takes a special person to be a dad” – Proverb

I wasn’t planning on writing about my father this Father’s Day as I have written about him on and off through my blog. But dear Hugh, a fellow MM Warrior, wrote and asked me if I was planning to, like I did for my mother. He said he thought it would be really cool to know more about him. Well you don’t need to give me much of an invitation to write or talk about him. He was my hero. In many ways he still is. His death was my first Life’s tragedy. I could have had one not so steep a gradient on that score, that’s for sure. As the five year fog that began to lift after his death, I began to live my life in a way I hope honored him and all he taught me in life for those short years we were together. You know the book, “I Learned All I Needed to Know in Kindergarten?”, that was what it was like being Jim Hudson’s daughter. He taught me everything I needed to know to succeed in life by the time he left us, so abruptly. Continue Reading »

Tags: Beale AFB, Blackbird, Father, Father's Day, Lt Col James W. Hudson, SR-71

Posted in Our Life | 9 Comments »

Cancer Supportive Care Model – Paradigm Shift

Jun 14th, 2011 by Lori Puente

Click to Enlarge

“…To overcome the anxiety associated with cancer and to foster patient participation, the MIRT has a longstanding open medical record policy; ie, patients have instantaneous and unlimited access to their own medical records.”

Little Rock’s Myeloma Institute for Research and Therapy (MIRT), at UAMS, founded and directed by Dr. Bart Barlogie as made the news with a white paper in The Journal of Participatory Medicine.

Tags: MIRT, paradigm shift in healthcare, patient participatory medicine & research, UAMS

Posted in Misc, Multiple Myeloma | No Comments »

Myeloma Clinical Trial Uses Natural Killer Cells

Jun 10th, 2011 by Lori Puente

Myeloma Clinical Trial Uses Natural Killer Cells

YAY!!!!

UAMS has formally announced the next phase of this research effort!

This is what Jan & Bruce have embarked on. He is high risk aggressive and relapsed after enjoying a year in CR. It’s great to see a formal announcement about this research. I remain hopeful and pray for Jan & Bruce, and for all of us!

What a great way to start the day!

Tags: natural killer cells, UAMS

Posted in Multiple Myeloma | No Comments »

The Way Out is the Way Through…

Jun 10th, 2011 by Lori Puente

“Can’t see the forest for the trees.” – Unknown

(“You cannot see the big picture, as your are immersed in the details. You have to get out of the forest to see it, because while you are in the forest, you only see the trees that comprise the forest; but you cannot see the forest as a whole. When you are focusing on details, it is more difficult to see the issue as a whole, as you can only see the details that comprise the issue.” – Answers.com)

We bump along in life, some happier than others, and then WHAM! Continue Reading »

Tags: The way out is the way through

Posted in Caregiver Thoughts | 4 Comments »

Cancer in the News…

Jun 8th, 2011 by Lori Puente

“What cancer does is, it forces you to focus, to prioritize, and you learn what’s important.” – Joel Siegel

It felt good to be away, but nagging in the back of my mind as I was enjoying my family back east and little to no connectivity when at the farm, was “How is everyone doing? What’s happening over at The Beacon? What’s Margaret uncovering?”

I really work hard to be “in the moment” – present time if you will. Enjoy what I’m doing while I’m doing it. I did pretty good, but you were never far from my mind. Continue Reading »

Tags: cancer news, generic cancer drug shortage, Margaret's Corner, Matt Damon's Father, The Beacon

Posted in Caregiver Thoughts, Multiple Myeloma | 7 Comments »

There’s No Place Like Home

Jun 6th, 2011 by Lori Puente

“Home was always where WE were.” – Lori Puente

As a “military brat”, this was how it was for us. We moved around, often in base housing. It was simply the way it was for us, we knew no different.

Tags: home

Posted in Our Life | 1 Comment »

A Friend’s Wedding

Jun 5th, 2011 by Lori Puente

Hudson, Betty 'Colson', Montana

“But friendship is precious, not only in the shade, but in the sunshine of life, and thanks to a benevolent arrangement the greater part of life is sunshine.” – Thomas Jefferson

Continue Reading »

Tags: friends, Wedding

Posted in Our Life | 2 Comments »

« Newer Posts - Older Posts »

“Fatigue is a daily lack of energy; an unusual or excessive whole-body tiredness, not relieved by sleep.” – Chemocare.com

“The thing that most forget while dreamily looking off into the horizon for the ship of their dreams is that such ships never sail in, but are actually built beneath their very feet.” – Notes from the Universe (Mike Dooley)

“The doors we open and close each day decide the lives we live.” – Flora Whittmore

“Other things may change us, but we start and end with the family.” – Anthony Brandt

Fireworks Booth Elk Grove

A rose can say “I love you”, orchids can enthrall, but a weed bouquet in a chubby fist, yes, that says it all. ~Author Unknown

“Twenty-one percent of patients required a second course of these stem-cell mobilizing agents because they failed to collect the target collection number of four million stem cells per kg.”

“You know what your problem is, it’s that you haven’t seen enough movies – all of life’s riddles are answered in the movies.” – Steve Martin

“Dr. Elias Anaissie of the Myeloma Institute for Research and Therapy at the University of Arkansas for Medical Sciences presented these guidelines at the International Myeloma Workshop (IMW) in Paris last month.” Excerpt from The Myeloma Beacon (click link for article)

Hand Painted Twisted Rayon, Chocolate with Ribbon Highlights “Nothing contributes so much to tranquilize the mind as a steady purpose – a point on which the soul may fix its intellectual eye.” – Mary Shelley

“The I in illness is isolation, and the crucial letters in wellness are we.” – Unknown

“Any man can be a father, but it takes a special person to be a dad” – Proverb

Click to Enlarge “…To overcome the anxiety associated with cancer and to foster patient participation, the MIRT has a longstanding open medical record policy; ie, patients have instantaneous and unlimited access to their own medical records.”

“Can’t see the forest for the trees.” – Unknown

“What cancer does is, it forces you to focus, to prioritize, and you learn what’s important.” – Joel Siegel

“Home was always where WE were.” – Lori Puente

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A rose can say “I love you”,
orchids can enthrall,
but a weed bouquet in a chubby fist,
yes, that says it all.
~Author Unknown

Hand Painted Twisted Rayon, Chocolate with Ribbon Highlights

“Nothing contributes so much to tranquilize the mind as a steady purpose – a point on which the soul may fix its intellectual eye.” – Mary Shelley

Click to Enlarge

“…To overcome the anxiety associated with cancer and to foster patient participation, the MIRT has a longstanding open medical record policy; ie, patients have instantaneous and unlimited access to their own medical records.”