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He's probably drinking coffee, but you get the idea!

“Common sense and a sense of humor are the same thing, moving at different speeds. A sense of humor is just common sense, dancing.” – Willam James

Pat Killingsworth, an inspirational and long time Myeloma blogger and writer has written an article over at The Myeloma Beacon, where he writes regularly. The article is about the different supplements he takes in conjunction with his MM treatment regimen. He has successfully managed his myeloma without a SCT and has also written a book “Living with Multiple Myeloma”. In his article he mentions the Velcade/Green Tea Study and a bit of a flurry of comments occurred (including mine). Continue Reading »

“My life is my message.”  – Mahatma Ghandi

Have you tried to help someone get up and down, when they are in a weakened condition or elderly? Handing your hand is not very stable for them. Here is a simple tip I learned from my mother’s hospice nurse that did the trick.

I often see folks struggling with someone they love and I have yet to go over and intercede to share this simple tip. One of these days I will get up the courage to do it. But for now, here it is for you. Continue Reading »

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

Wow. As I started to do a little research on this subject, so it wasn’t just all about what I think, I was struck by all the information and data about how they don’t know what the cause is. Are you kidding me? Continue Reading »

“It’s not the years in your life that count.  It’s the life in your years.”  – Abraham Lincoln

This is an article on an MD Anderson Study.

Complete Remission Predicts for Long Survival of Patients with Multiple Myeloma.

I’m not so sure about what is being reported here as being terribly significant and I’ll tell you why. First of all, there are quite a few MM patients I have met that are in PR and have been for many years. Living well and surviving in excess of the timeframe given for MM patients. CR is certainly something we all feel we want to attain, and I can’t say I wasn’t happy to hear Dave had achieved it. But I continue to find it fleeting. Imagine how the physician’s have felt over the years! Continue Reading »

Five Good Years

“Art is the stored honey of the human soul, gathered on wings of misery and travail.” – Theodore Dreiser, Life, Art, and America, 1917

Wowsa! An Indie movie is being made with a true backstory inspired by the writers’ friend who is battling Multiple Myeloma – Marcie Aboulafia. Her character is the mother of the boxer who comes out of retirement to fight again to help save his mother in her battle with MM. I will look forward to its release.

You can read more about it here: Five Good Years

Of Note:  Sugar Ray Leonard’s father has MM and he is signed on to the film.


“Success depends on the support of other people. The only hurdle between you and what you want to be is the support of other people.” – David Joseph Schwartz

Shortly after Dave was diagnosed, and I had moved to California, he needed to go on a business trip. It was a driveable distance from our home. He was somewhere between apprehensive and terrified about making the trip. Kind of like someone who is elderly gets when they just are too uncomfortable with the idea of “leaving home” to visit family or friends. Continue Reading »

Happy New Year!

“All endings are also beginnings. We just don’t know it at the time.”

Mitch Albom



“The most important thing in illness is never to lose heart.”  – Nikolai Lenin

As someone dealing with Myeloma, now, in almost 2011, I can’t tell you how frustrated I get when I read online or someone writes me, and OLD information about MM is STILL being disseminated – such as a 3-5 year survival! There is so much more going on and this “opinion” is way outdated. If you are beginning your journey with MM, please, please, please, don’t get caught up in all of that. If you see a doctor for consultation that holds this view, don’t go back. Continue Reading »

Dianne & Vern

”In the rising of the sun and its going down, We Remember Him”- We Remember

A wonderful Myeloma caregiver, lost her husband, Vern, recently after a valiant effort. She began a blog to chronicle her journey as a Myeloma Widow. As you can imagine, its very hard to lose someone you love, and then journey through those milestones, like “the holidays” without them. Dianne wrote a wonderful post today (The Sparkles Are Back!). It will warm your heart. Continue Reading »

Bob, Dave, Bonnie, Me (L-R)

“It is by chance that we met, by choice that we became friends.” – Unknown

What a wonderful evening!

Over a year ago, I received a heartfelt email from Bonnie. Her boyfriend, Bob, had Multiple Myeloma.

It turns out that Bob was diagnosed about the same time as Dave, from the same area where we were in the Washington, DC area and also was treated in Little Rock.

Continue Reading »

“One person caring about another represents life’s greatest value.”Jim Rohn

Lou writes a column called Birds in Spring for The Myeloma Beacon. He has such wonderful insights in many areas and its always a pleasure to read his latest musings. Caregivers are such an integral part of a Myeloma patient’s journey. His acknowledgement is very touching. Click Here Continue Reading »

Two Wolves

Native American Indian Legend – A Cherokee Parable

One evening an old Cherokee told his grandson about a battle that goes on inside people.

He said, “My son, the battle is between two wolves inside us all.

One is Evil. It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.

The other is Good. It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith.”

The grandson thought about it for a minute and then asked his grandfather: “Which wolf wins?”

The old Cherokee simply replied, “The one you feed.”

My mother’s father was Cherokee and even had a “roll number”, when they used to keep track of where Indians were living. He was born in 1898 and lived to be 96 years old. He had the exact profile of the Indian on the Indian Head Nickel. My mother told me when she was a little girl, she thought her father must be very important because he was on money. How cute. But he was about as Indian as your local grocer (no disrespect intended to Native Americans or Grocers). It was a culture that he never lived, nor passed on. But I’m proud of this heritage and I enjoy Indian Folklore. This one is one of my absolute favorites and is as true now as it was whenever it was conceived and taught to their children. I will be spending some time with my children this Christmas and won’t be “blogging” quite as much, but then you never know… Enjoy!

Questions?

“Sometimes the questions are complicated and the answers are simple.” – Dr. Seuss

Often I will put up a post about a topic I have something to say about that came to me randomly. Someone wrote something, commented, alluded to it, and the light bulb goes off in my head, Oh I have something to say about that, or to add to the discussion.

One person wrote to me about what we MMer’s lovingly call “Dex Day!” I’ll be writing more about those nasty steroids in a later post. I’m collecting some “data” on the subject. Continue Reading »

From my dear friend Judi while we were in LR

“There is no ideal Christmas; only the one Christmas you decide to make as a reflection of your values, desires, affections, traditions.” – Bill McKibben

When Dave and I were in Little Rock during the holidays in 2008, he was emotionally and physically struggling. He was sad, some would argue depressed, in pain, insecure, frightened, unhappy, etc. I remember the day we were doing his first of two Stem Cell Transplants. It was December. He had just recovered from the collection and now he was slammed again with another four days of high dose chemotherapy. He was incoherent most of the time, and continued to be very introverted and disengaged with anyone else around us.

As we were waiting in our room, alone, for his stem cells, which I was told would be very anti-climatic, and it was, there were Christmas Carolers on the floor singing songs. We could hear them. Dave began to weep and motioned for me to close the door. He just couldn’t bear it.

Continue Reading »

“Overall, there is a statistically significant advantage to early stem cell transplantation in patients under the age of 65… ” – Dr. Siegel

Another great article at The Myeloma Beacon. There is still much analysis to do on this issue, but its good to see that it is going on, vigorously, so that newly diagnosed patients have a clearer path out of the muck, should transplant be a realistic and viable option for them. Continue Reading »

“The caregiver has to know what to do and who to call,” Lori said.

It was such an honor to have Little Rock be my debut speaking engagement. I love it there and I love my “Myeloma Buddies”. Those I know and those I have never met. It is just a place that you step into and feel the warmth and comfort of a large family.

Jon P. did a great job writing the story and interviewing me. I enjoyed it.

Without further adieu, the article….. link here


A state-of-the-art test assesses prognosis and helps individualize therapy.

An article appearing in HemOnc Today, Clinical News in Oncology and Hematology. One of the most unique diagnostic tests developed at UAMS in their 21+ years of exclusively researching Multiple Myeloma at the Myeloma Institute of Research and Therapy (MIRT). Continue Reading »

“Gratitude is an art of painting an adversity into a lovely picture.” – Kak Sri

Sean, of Myeloma Youreloma, is a regular columnist over at The Myeloma Beacon. He is a writer by profession, an artist with words, and I always enjoy both his blog posts and his articles.

He has written a lovely article as we head into the Holiday Season, that I think probably illustrates what many of us, on “The Other Side” of treatment are feeling this year.

For those of you who may be embarking on your treatment, during the holidays, I hope that you can find a way to have the point of view, that you are truly blessed to be in a position to have your treatment. Continue Reading »

The Glove

“Between Dave’s chemo brain and my menopause, we make about 3/4 of person.” – Me (Lori)

We live in one of those neighborhoods where they have a gang of mailboxes, with keys, so that the Mailmen don’t have to go house to house. Its different for us, but it makes total sense for the post office to be more efficient. Ours is right on the court so its fairly easy. Continue Reading »

“…I’ve reached a point now where I view my myeloma as more of an inconvenience than incapacitating.” – Hosea Long

Thank you Hosea, for sharing your story and offering Hope and Inspiration to the rest of us!

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