Sometimes I suffer from techno paralysis.
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Yesterday was a game changer for me. A reassuring visit from my guardian angel, then an exciting and energizing hour long, on-air conversation with myeloma patient and activist, Jenny Ahlstrom.
I’m going to delay posting details about my discussion yesterday with Dr. Roy about whether to transplant or not to transplant until Friday. Last evening’s Myeloma Cure Panel discussion is an ABSOLUTE MUST-LISTEN for any myeloma patient that has only been treated for one year or less.
I reported back Wednesday afternoon after meeting with my myeloma specialist, Dr. Roy, at Mayo Clinic. The contrast between Dr. Roy’s slow and steady incremental therapy approach, and the “hit the myeloma hard” Total Therapy approach preferred by Dr. Tricot on Wednesday night’s broadcast couldn’t have been more stark.
Those of you starting to make plans to travel to Amelia Island for next year’s Myeloma Beach Party on March 7th, HOLD ON! March 21st may turn out to be a better date for us. A beachfront establishment named Sliders has offered to donate the use of their amazing Beach House on Saturday, March 21st; it’s booked for a wedding on the 7th.
Slider by IWEBIX
Posted on October 22 2014 | 165 views
Sometimes I suffer from techno paralysis.
Posted on October 21 2014 | 280 views
Reflecting back on my autologous stem cell transplant in the summer of 2011, the experience wasn’t all that bad–except for one glaring issue: nausea. I understand some patients experience very little nausea during the recovery process. But for the rest of us, it’s a truly miserable experience.
Posted on October 20 2014 | 436 views
From time to time I like to do follow-ups about former Patient Snapshot subjects–especially when the news is good. In February, 2013, I wrote about Mark, a newly diagnosed patient that was having a hard time. Mark’s daughter, Stephanie, had emailed me for help; she was very concerned about her dad. I was more than happy to, eventually featuring Mark in two posts:
Posted on October 18 2014 | 529 views
Thanks for the encouraging emails and comments! I’m stoked (OK, dexed up!) to keep on working. I did see that some of you are having trouble downloading the extra large pictures I posted yesterday–and I have a lot more to put up today–so I’ll cut the size down on this next batch.
Posted on October 17 2014 | 509 views
Last year I surprised Pattie when I asked her where she wanted to live when I was gone. It was a difficult topic, but she didn’t hesitate. “Not here.” she said. “Then let’s move now, when I can still help out.” I responded, kick-starting an exhausting, eight month long odyssey.
Posted on October 16 2014 | 536 views
Lots to share today. I’ll start with how I’m feeling and what comes next.
Posted on October 15 2014 | 432 views
The American Society of Hematology (ASH) meetings are just around the corner, so there should be a lot of myeloma related news soon. In the meantime, here’s an update.
Posted on October 14 2014 | 730 views
A week ago, good friend and fellow patient blogger, Gary Petersen, wrote a post about an important topic:
Posted on October 13 2014 | 373 views
Looks like I called it! A few weeks ago I inferred that panobinostat could well be the next myeloma drug to garner FDA approval:
Posted on October 12 2014 | 481 views
Are you like me? Are your bones negatively affected by multiple myeloma? If so, Wednesday’s Myeloma Cure Panel discussion could be important.
Posted on October 11 2014 | 435 views
Still don’t feel well, but I don’t care. Our walk on the beach this morning was spectacular!
Posted on October 10 2014 | 568 views
It’s good to be home! My flight from Boston was a bit bumpy but on time.
Posted on October 09 2014 | 436 views
Every October a group of myeloma survivors and caregivers get together in Boston to help celebrate our lives–and the lives of those we lost this year. Our reunion centers on the Leukemia and Lymphoma Society’s (LLS) Light the Night fundraiser. The even was tonight.
Posted on October 08 2014 | 529 views
I heard that Dr. Bart Barlogie was retiring. Is it true?
Posted on October 07 2014 | 838 views
I’ve “known” Matt for what seems to be a long time. We have spoken by phone and exchanged emails for almost two years. I find his story exceptionally hopeful. Matt’s unusual type of multiple myeloma was unresponsive to therapy combinations that work for most everyone else. Then a breakthrough!
Posted on October 06 2014 | 1,060 views
I have expressed concern about the high cost of chemotherapy meds for me and my fellow multiple myeloma patients a number of times. So last night’s 60 Minutes report about it really hit home.
Posted on October 05 2014 | 435 views
My good friend, myeloma survivor, serial marathoner and folk hero, Don Wright, just keeps on truckin’. Despite being hospitalized with pneumonia two weeks ago, Don was at it again this weekend in Portland.
Posted on October 04 2014 | 619 views
After two weeks of feedback, one thing is clear: I’m fortunate to have a lot of therapy options left.
Posted on October 03 2014 | 755 views
A week ago fellow blogger, Nick Van Dyk, took the time to construct a thoughtful road map for me to use in my search for the optimum late stage myeloma therapy. I felt that his input is so important, so well done and instructive, I wanted to wait until I had time to share my thoughts about his thoughts with you.