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Wearing their Super Bowl Jackets @ Indy

“We’re here! Superrrrr Bowlllllllll!” – Text

Dave has been blessed this year with a couple of companies that have gifted him with football tickets. We got two sets for the championship games with the San Francisco 49ers and then he couldn’t believe it when another company gave him two super bowl tickets! As luck would have it he would be in Indiana for business the week before. So we decided to extend the other ticket to our son (much to our daughter’s dismay!). Dave flew him up from Miami on Saturday morning and picked him up. Continue Reading »

Hang in…

So I’ve had a couple of friends both in and out of Myelomaville check on me with these latest posts being rather “serious” and difficult. I’m good. I started to write about these one by one each day without really processing the whole sequence fully. There are four more to go and then we’ll move on! It has taken a lot of me to dig in and write about them. But it’s certainly something I have thought about. Not all of us are in the same place, but some of us are in the places these eight labyrinths talk about. I think it’s important and I hope helpful. It is indeed a difficult topic to delve into, to discuss. What I would like to think this exercise can do is offer some relief, some knowledge, some freedom and understanding. Understanding can bring us solace, sustenance, and strength. So hang in. We are almost done. Thank you for sticking it out so far.

“…you’re the only one who truly understands what he or she needs.” – Gail Sheehy, Passages in Caregiving

Gail Sheehy’s Labyrinth IV is Playing God. 

“By now you’ve become a seasoned caregiver. You’re good at it and the only person your loved one trusts. You also believe you’re the only one who truly understands what he or she needs. You consider yourself heroic, partly because others tell you so. You are Playing God.  But the truth is that we can’t control disease or aging. And if we keep trying, we will be overcome by stress and fatigue.  When all our efforts fail to protect our loved one from inevitable downturns, the failure will feel like our own.” Continue Reading »

“Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain!” – Unknown 

In Gail Sheehy’s Eight Labyrinths of Caregiving, Labyrinth III is the Boomerang.

A boomerang is an aerodynamically shaped object designed to fly efficiently through the air when thrown by hand. The term usually refers to an object made to follow a circular flight path that returns it to the thrower. (reference)

Continue Reading »

There is not a ‘required way’ to walk a labyrinth.

The beauty of the labyrinth is that people can approach the experience on their own terms. However, as a guideline, we often break the ‘walk’ into three stages.

Entering: (also referred to as shedding purgation.) During this stage you walk the path toward the center, and should ‘center yoursef’ by trying to put aside worldly concerns and quiet the mind. Continue Reading »

“The caregiver’s journey is different. It does not proceed from stage to stage in a neat fashion. It is definitely not linear. It feels like we are going around in circles, thinking we have resolved a crisis only to have it return or be superseded by a different, unexpected crisis…A maze creates chaos. A labyrinth orders chaos. We cannot get lost. However, the path is not visible, nor is it predictable—and that reflects our journey as caregivers.” — Gail Sheehy from Passages in Caregiving 

Labyrinths are found in many cultures dating back to 3500 BC. Unlike a maze, the labyrinth is unicursal, (relating to or denoting a curve or surface that is closed). It has a single path leading to the center with no loops, cul-de-sacs or forks. Modern “pilgrims” walk the labyrinthine path as one of many tools to enhance prayer, contemplation, mediation, and/or personal growth. (from: ChartresLabyrinth)

Continue Reading »

“I had an inspiration while walking a labyrinth. You go in circles, sudden twists and turnings. It’s a lot like the surprises and complications we face on our journey as caregivers.  A labyrinth has one true path. It can eventually lead us to the center, but you can’t see the path ahead. It’s not predictable.” – Gail Sheehy

A member on our myeloma support group at Facebook, mentioned Gail Sheehy’s book on the subject of caregiving, “Passages in Caregiving” and the Eight Labyrinths of Caregiving (hat tip: Julie). I had not heard of her work on this subject. I found her video and the list of the eight labyrinths mentioned.

As I was reading through them I thought, “Yep, that’s true.” Not just for us, but the patients and family too. I will be hoping to discuss them here and having a little chat on your thoughts over the next few days. But you don’t have to wait for me. I’ve included links at the bottom of the post. It looks to be both a practical and spiritual guide.

 

Click for Link to Amazon

 

Gail Sheehy’s website

Eight Labyrinths

ChartresLabyrinth (a pdf on a description of what a labyrinth is and how to walk it)

 

 

 

 

“The rules of the past no longer apply.” – Ken Anderson, MD, Dana Farber

An interview with Ken Anderson at the 53rd ASH Conference on New Therapies and Changing Cytogenetics, that might be of some interest and value to those of you with abnormalities that were once considered problematic that are no longer. It is becoming a trend to embrace the findings of researchers out of UAMS that Gene Expression Profiling (GEP) is a valid and helpful diagnostic tool in the treatment of multiple myeloma. In past presentations I have posted, this acceptance of it’s value has yet to get pushed into the clinical setting at local oncology centers. Continue Reading »

Stand by Me

“When the night has come
And the land is dark
And the moon is the only light we’ll see
No I won’t be afraid, no I won’t be afraid
Just as long as you stand, stand by me” – Lyrics

Early in Dave’s diagnosis, I ran across this video, filling my endless hours of time on my hands, caring for him when he was in very bad shape physically, spiritually, and emotionally. I remember the first time I saw it, and since, it gives me goose bumps (every time) and makes my eyes moist to different degrees, depending on what’s going on in my life when I review it again. I love it. I love the artists, the song, the presentation, the ingeniousness of the producer. The spirit of my fellow man depicted with their ability to sing in the face of whatever obstacles they may have, from our vantage point. I’m not going to assume they see it the way we might.

I hope it moves you as it has me, time and time again. When I’m feeling alone, sad, or joyful and triumphant.

Someday, I hope to travel to some of these far away places and I will no doubt be looking for these street musicians. I will definitely leave my change and hopefully buy their latest CD if they have one. I have been known to do that from time to time and when I listen to the ones I’ve bought, it always brings me a moment of pleasure of the events of that day and takes me back to how I felt listening to them while standing on the corner. 

 

Dr. Tricot, Iowa

Guido Tricot, MD, PhD, is the director of Holden Cancer Center’s Bone Marrow Transplant and Myeloma Program at UI Hospitals and Clinics. He specializes in multiple myeloma and has been researching and treating this type of cancer for over 20 years.

Dr. Tricot, who had been heading up the only Total Therapy program outside of UAMS, at Huntsman in Utah has moved on. He is now offering TT at the University of Iowa.

So, this is sad for the folks on the West Coast and who were patients of Dr. Tricot at Huntsman, but it is good news for folks in the MidWest. I will work to change my references to Huntsman over time. But for now, you can find Dr. Tricot in Iowa with…

 

Herky the Hawk!

 

Good luck Dr. Tricot and colleagues. 

 

Andrew Schorr: Are you optimistic?

Jack Aiello: I’ve said to patients for the last 10 years, if you’re going to be diagnosed with myeloma it’s a lot better now than it was 15 years ago. And that holds true, year after year after year…

Thanks David at Workingwithme.

Lone Tree, Lake Oroville, 2007

“Frankly remission is an awkward place. In fact beyond the normal wear & tear of aging, I now look & feel as well as I did before I became ill. But I have not been able to go forward as though nothing had happened, & that is because something has happened & it happened to me.”

I have no idea where this quote came from. I’m sure I grabbed it from somewhere on the web, a friend or an article. I saved it months ago to write a post about it and failed to save the reference, for which I apologize. Continue Reading »

Simple Pleasures

“When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.” ― Helen Keller

In light of recent dialog on how to live with cancer, I thought I would share with you how much the simplest of pleasures can fortify my days. Left is a photo I took this morning of my backyard in N. CA. We have gotten some much needed rain, which means the Sierras are getting snow, which means we’ll have water in the summer to irrigate crops as most of our water comes from snow melt run off. Continue Reading »

The “Head Game!”

“Before I even knew what we would do, what the treatment would be, or it’s outcome, I had to get Dave’s head in the game!” – Lori Puente

There is a wonderful article over at The Myeloma Beacon, by Kevin Jones where he talks about the battle between him and his MM. It has garnered a great deal of discussion and comments. It was sent around also through the Myeloma ListServ (managed by Beth Morgan). And that resulted in some more wonderful back and forth amongst patients with MM that was refreshing and enlightening. Continue Reading »

Lone Tree, Lake Oroville, 2007

What Cancer Cannot Do

Cancer is so limited….
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.

Author Unknown

I remember the first time I saw this in Arkansas I dug around in my purse for some paper and wrote it down. Every once in awhile I run across it again and so if you have never seen it, here you go. If you have, it is a nice reminder.

“If we knew what it was we were doing, it would not be called research, would it?” – Albert Einstein

Recently there was a study about treating those MM patients that were historically in the “wait and see” mode. As you can imagine folks were a bit rattled (an understatement). Kind of like how we feel when someone says SCT shows better lifespan, or Tandem wins, or delayed SCT shows same results, etc. We can get all whigged out about whatever choice we have made. (Which BTW, I recommend not doing that. Don’t second guess, don’t be dismayed. You made the right decision for you at the time bringing in all the factors that were important to you with the information then.)

Ok. So The Myeloma Beacon being ever vigilant and having a continuing uncanny perception on how their readership might be feeling with certain news, did an article today with a Dr. Ola Landgren, a MM researcher at NIH that specializes in this particular group of MM patient presentation.

Article Here

A recent commenter on my blog mentioned that he sees Dr. Landgren. I had not heard of him, but then we are not MGUS or Smoldering, so I didn’t beat myself up too much about it. It was kind of cool to see his name so quickly after this mention. Between him studying those not yet symptomatic and Dr. Bart Barlogie (et al) studying those who are demonstrating high resistance to drugs, both looking for the genetic markers, I think we got it covered! 

Margaret’s response to the Beacon article here! I gladly defer to her on this issue as she has been blogging as an MM patient in this category for a very long time.

 

Myeloma Video Diary

 “It’s not about waiting for the storm to pass. It’s about learning to dance in the rain!” – Unknown

We have a very active FB MM Support Group (check my resources page if you haven’t joined yet). So far with over 400 members we are very thoughtful, kind and supportive toward one another, regardless of our treatment choices, knowledge base, or MM presentation. Anyway hat tip to Cindy who put this little nugget up there. Continue Reading »

Schacht SideKick Wheel

“Creativity is allowing yourself to make mistakes. Art is knowing which ones to keep”. – Scott Adams

One of the things that happened for me when I returned from Florida over the holidays was to get my new spinning wheel out of “lay away”.

During my class I took home 3 different wheels to spin on. This one was the one I was hoping to love and took it home last. I was happy that I did love it. It collapses (it is folded up here in the photo to your left) and only weighs 13 pounds with a carrying strap to throw it over your shoulder. Continue Reading »

“All doctors have proven to me is that they are good enough students to get through med school.” – Lori Puente

Another favorite of mine that my friend and former mentor used to say to me was, “Remember, they are ‘practicing’ medicine.”

I don’t mean to be a doctor basher. I have many friends who are doctors and many doctors I have met in my life’s journey that I truly respect and hold in high regard. But like almost any profession, there are fewer than I would expect.

Continue Reading »

“Life is like a game of cards. The hand that is dealt you represents determinism; the way you play it is free will.” – Jawaharal Nehru

It’s hard to believe yet another year has gone by. It has been a good year for us, personally. Not so true for others and then some have done exceedingly well. It is a time of reflection for me. Something that I do throughout the year, but somehow the New Year’s festivities forces me to focus on it a tad bit more than I might otherwise.

Continue Reading »

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