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.
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.
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 […]
Thursday I ran an emotional post about being “myeloma free.” Everyone understands that’s only an expression, right? Few myeloma patients/survivors are ever truly cancer free.
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.
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…
I unceremoniously experienced my first case of C. diff during the first of my two, modified autologous stem cell transplants this summer. All I knew is everyone wore yellow paper gowns when they came in and out of my room–and I needed to pull an IV pole with me as I sprinted the six steps […]
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.
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.
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!”
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 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.
After a series of drug company meetings this morning, I’m flying up to Iowa City for tests following my second stem cell transplant in late October. How am I holding up? Here’s the good, the bad and the ugly…
I’m betting most of you have walked into your local infusion room and noticed the sickly, bald and emaciated guy sleeping across the way; three or four bags of yellow and caramel colored IV bags sagging from the glistening stainless pole above. Most myeloma patients are lucky. Our chemo tends to be more internalized: no […]
As often happens after I memorialize someone, I got several emails from others that recently lost their loved ones. One graciously thanked me for sharing my journey Friday, revealing that she had lost her husband after a short, six month struggle with multiple myeloma.
Day 30. 30 days since the first half of my 8 million+ stem cells were infused back into me up in Iowa City. I was suspicious of a conspiracy; that my cells would be altered and I’d emerge an Iowa Hawkeye. No way! I still bleed Badger Red.
It’s been an interesting week. I’ve had better.
If a tree falls in the forest–and no one hears it–did it fall at all? If I’m on the cover of Healthmonitor Magazine promoting multiple myeloma awareness–and I can’t find the article or cover shot online–did anyone read it?
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.
More good news about Mike Barron and his successful run with daratumumab. Mike wants all to know that his latest cycle picks up where the last on left off: daratumumab and dex is doing the trick. “It’s like a miracle,” Mike wrote me.