Articles tagged with: Patient Column

Opinion»

[ by | Nov 7, 2011 10:12 am | 7 Comments ]
Big Sis In Burgundy: The Most Difficult Day

It had been my intention to write this column about the terrific experience I had recently when I attended the MMRF Gala.  What a spectacular event – so inspiring.

But, I am going to have to save that for next time, because last Thursday was The Most Difficult Day – the most challenging 24 hours my sisters and I have experienced so far in our myeloma journey.

The Most Difficult Day made me appreciate even more all the wonderful people who do their job well when working with myeloma patients.

Let’s start …

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Opinion»

[ by | Nov 3, 2011 1:18 pm | 38 Comments ]
Pat’s Place: Thank You, Team Myeloma!

As I prepared to write my weekly column, I must admit my mind drew a blank!  Why?  Sheer exhaustion, I think.

As most of you know, I underwent an autologous stem cell transplant this summer. Two weeks ago, I shared how the transplant had actually made my multiple myeloma worse.

Earlier this week, I learned that surgery will be required to remove an area of melanoma on my left ear.  That’s right — melanoma — as in skin cancer.

I need a vacation!

Instead, I’m heading out to attend and speak at …

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Opinion»

[ by | Nov 1, 2011 2:11 pm | 15 Comments ]
Sean’s Burgundy Thread: Turkey, Touchdowns, and Multiple Myeloma

In just a few short weeks, millions of folks across the U.S. will travel over-the-river-and-through-the-woods to gather with family and friends during one of the nation’s most beloved holidays - Thanksgiving!

My family is no different. We love Thanksgiving! I can see it now:

On Thanksgiving morning, through the magic of television, we will be whisked away to The Big Apple to clap along with rousing marching bands, to ‘oooo’ over the helium-filled superhero balloons, and to ‘ahhh’ over the masterfully decorated motorized floats of the this year’s Macy’s Thanksgiving Day Parade. …

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Opinion»

[ by | Oct 27, 2011 12:27 pm | 22 Comments ]
Pat’s Place: Tips For Infusion Days

I started my Velcade (bortezomib) / dexamethasone (Decadron) infusions again last week after recovering for four months from a stem cell transplant that I received this summer.

The infusion process got me thinking about ways I have learned to cope with getting “stuck” for IVs over the years.

Sure, I’m a lot tougher now than when I started treatment for my multiple myeloma almost five years ago.

Even so, it isn’t any fun sitting still while a nurse digs around in your arm, trying to start an IV and looking …

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Opinion»

[ by | Oct 25, 2011 1:36 pm | 9 Comments ]
Pat’s Cracked Cup: Alchemy

Halloween is in the air. Pumpkins, black cats, ghosts -- a witch in black stirs her cauldron of steaming brew. I am reminded that there is no magic potion for multiple myeloma. “It is easy to get a thousand prescriptions, but hard to get one single remedy,” says the Chinese proverb. Still, each of us with multiple myeloma hopes to stumble upon the perfect alchemy for survival.

There is no sparkling elixir to pour from a bottle -- living is our laboratory. Finding the precise combination of elements for well-being involves effort. …

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Opinion»

[ by | Oct 24, 2011 1:23 pm | 6 Comments ]
Big Sis in Burgundy: Onward!

Still in post-marathon euphoria, I boarded the plane Sunday afternoon a week ago, and headed to Pittsburgh for my sister Deana’s Monday oncologist appointment.  All my energy was directed toward us getting the report we hoped for – clearance to move to transplant.

Deana picked me up and was wearing a Texas A&M baseball cap – an appropriate choice for Team BTHO MM.  I could see that she was bald underneath, and she later removed the cap to show me her head.  I had been concerned …

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Opinion»

[ by | Oct 20, 2011 11:02 am | 62 Comments ]
Pat’s Place: I Want My Money Back!

One week ago, I learned that the autologous stem cell transplant I endured this summer at Moffitt Cancer Center in Tampa, Florida, has most likely failed.

What do I mean by “failed?”  I entered the hospital with a monoclonal protein (M-spike) reading of 0.2.  There was also no trace of myeloma in my bone marrow.  Now--100 days later--my M-spike is an alarming 0.5.

My wife Pattie and my doctors were stunned.  What percentage of auto transplant patients with extremely low tumor burdens like mine have higher M-protein levels 100 days post-transplant than …

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