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30 12, 2015

Hotel options for April Beach Party event

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It's hard to believe that we're only three months away from the 3rd Annual Pat's Myeloma Beach Party. The event is a "party" in name only; there will be 15 myeloma experts on hand to address topics that last year's attendees and readers feel are most important to them. The three day event is scheduled

28 12, 2015

My Patient Power interview at ASH

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Saturday I shared a link to an interview Jenny Ahlstrom did with me the second day at ASH. Can't get enough of me unabashedly sharing my opinions about myeloma therapy options on video? Then fasten your seatbelts! CLL survivor and dear friend, Carol Preston, interviewed me at ASH for Patient Power. The link below should

26 12, 2015

An amazing day that exceeded unrealistic expectations

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Sometimes Christmas day can be a letdown. Let's face it; the media and retailers build it up so much it's hard to live the idealized version. Am I right? That said, the time I spent today with Pattie, our Island Dog and Calypso Kitties was amazing. I didn't even think about checking email or posting

18 12, 2015

An amazing emotional roller coaster ride

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I promised to follow up on yesterday's amazing news. Dr. Tricot reassures me that my tests confirm there isn't any active myeloma left. Yet I didn't go into our meeting expecting such good news. Late Wednesday night I was able to take a sneak peek at my PET scan results Tuesday. I’m usually pretty good

17 12, 2015

I’M MYELOMA FREE!

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Looks like our highly toxic gamble to try a pair of salvage autologous stem cell transplants worked! I'm at the airport getting ready to board a plane to Atlanta on the way home, so no time to post details... Still, I quickly wanted to share the good news with so many that have been sympathetic

15 12, 2015

This is why I do what I do

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I experience countless emotional moments as I hear from myeloma patients and caregivers from around the country and sometimes, around the world. I wanted to share an exceptionally personal one with you here today. In October, I flew up to Boston for an annual reunion of Myeloma Patient Ambassadors. I was a member of the

14 12, 2015

Back to ASH: Ninlaro and Pomalyst combo promising

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Before I pass along important information about Takeda's new oral proteasome inhibitor, Ninlaro (ixazomib), I wanted to share an update about how I'm doing. Much better, thank you very much!  Squirting a shot of vancomycin liquid into the back of my mouth (yuck) every six hours seems to be doing the trick. Another antibiotic, Flagyl,

13 12, 2015

BMT Bondage

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I'm feeling a much better today. I was in such a dark place. Feverish and saddled with abdominal pain and now nine days of diarrhea, To be wheeled from ICU up to the BMT unit was discouraging beyond words. But as so many of reminded me with love and certainty, "It will get better!" Funny

12 12, 2015

I’m tired of being sick

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They moved me from the University of Iowa ICU to the 7th floor BMT Unit late last night. I'd like to say that I'm resting comfortably. Still no fun on so many levels, but I am feeling well enough to get up and get around. I did eat oatmeal for breakfast and part of a

11 12, 2015

I’m in the ICU

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I left Orlando Wednesday afternoon. Sorry that I didn't post Thursday, but I was too sick--and in too much pain to do anything but moan, groan and sleep. A was already in bad shape when I arrived in Detroit to catch my connecting flight to Iowa City for tests. Missed the tests, ended up in

15 11, 2015

Good days? Bad days? Try both!

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It's been an interesting week. I've had better. I plan to spend a few upcoming posts to help unravel the mystery of why different patient's transplant experiences can be so different. Heck, I experienced a different complication following each of mine; my own recoveries were distinctly different, too. Of the three, my autologous stem cell transplant (SCT)

11 11, 2015

Thank God I’m Alive!

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I've been battling top to bottom GI issues. So much nausea and diarrhea that Pattie suggested I skip the hour drive to attend Mayo Clinic's monthly support group meeting. I reluctantly agreed. Too bad. My new friends there have been exceptionally supportive. GI hell or not, I'm blessed! Tough slog trying to normalize life back