Four different airports in two days to get to California. Seven or eight hours each way full of flight delays, disinterested and underpaid airline staff and shrink wrapped airport deli food.
Was it worth it? You tell me…
I spoke to an exceptional group of multiple myeloma and amyloidosis survivors and caregivers Thursday evening at the UCI Medical Center. There were patients there that needed canes and wheel chairs. But that didn’t stop them! One patient had pushed for her release from the hospital in order to make the meeting.
Group leader, Tom Swik, did an incredible job. It takes a lot of hard work to help organize the programs for a group of this size, and Tom handles it without missing a beat.
And my new friend Anthony, co-leader of the Inland Empire group that I met with last week, took the time to drive-up and lend a hand.
Tom was using a brand new wireless projector, compliments of the IMF. Pretty cool! Millennium Pharmaceuticals provided a tasty complimentary dinner for everyone who showed-up. The makers of Velcade do this anytime I fly-in to speak. That’s pretty cool, too. Thanks, Heather!
Tom shared his positive experience at last weekend’s IMF Support Group Leaders’ Summit in Dallas, reviewed some myeloma related news and introduced some new guests, including a patient I have been helping online, named Mary Ann. It was so good to meet her in person for the first time!
Then Tom turned the meeting over to me. As I shared my story and we all laughed about some of my travel mishaps, I walked back and forth through the group, leaning against the tables as I spoke. I was exhausted!
But who cares? I met an incredibly brave woman who had recently been diagnosed with both myeloma and amyloidosis. The amy had affected her throat, limiting her ability to speak. So her lovely daughter shared her frightening experience over the past few months. Apparently the docs didn’t think that she was going to make it. But there she was, smiling and so proud of her daughter!
My good friend, Andy Sninsky was there. Remember these posts from last April?
I can’t mention everyone of course. And I forgot to ask their permission for me to use their names. But I had the opportunity to speak individually with darn near everyone there. And while there wasn’t time for everyone there to share their story, after a break a half dozen members updated the group about the progress of their treatment and how they felt.
I heard some amazing stories: An 11 year survivor that is having success in a Kyprolis study. A tall, elegant woman sitting up-front who had done it all–a transplant and several different therapies. And a 60 year old tech director of the University of Southern California libraries, named Brian.
As Brian started to tell me about his recent stem cell transplant experience, it reminded me of the many fascinating patients I interviewed for my second book, Stem Cell Transplants from a Patient’s Perspective.
I told Brian about how I had interviewed other patients in the BMT unit while we walked up and down through the halls, each pulling our IV poles slowly along side us.
But no one I spoke with attempted to do what Brian did: He “walked” a marathon on his floor!
I asked Brian if he would email me and share his experience with my readers. He said that he would–and he did–so I will post that for all of you to read tomorrow.
I left inspired and energized!
I’ve met some incredibly brave men and women over the past two weeks! And I’ve gotten to see and do some interesting things. Thursday before the meeting I walked from my hotel a half mile or so to Anaheim Stadium where the major league Angels play. I stayed at the world famous Four Seasons Resort in Dallas. And I had a chance to spend some time in lovely Newport Beach and play tourist on Balboa Island.
Of course there’s never enough time. And I do run out of gas eventually, paying a physical toll for my busy travel schedule and early mornings.
So is it all worth it? HELL YES!
Feel good and keep smiling! Pat
My good friend, Andy Sninsky was there. Remember these posts from last April?
“Crazy Guy on a Bike” full of unexpected surprises
Inspirational Update: ‘Crazy Guy on a Bike’ has completed his cycling quest!
What a surprise to see him again and meet his wonderful wife!
I can’t mention everyone of course. And I forgot to ask their permission for me to use their names. But I had the opportunity to speak individually with darn near everyone there. And while there wasn’t time for everyone there to share their story, after a break a half dozen members updated the group about the progress of their treatment and how they felt.
I heard some amazing stories: An 11 year survivor that is having success in a Kyprolis study. A tall, elegant woman sitting up-front who had done it all–a transplant and several different therapies. And a 60 year old tech director of the University of Southern California libraries, named Brian.
As Brian started to tell me about his recent stem cell transplant experience, it reminded me of the many fascinating patients I interviewed for my second book, Stem Cell Transplants from a Patient’s Perspective.
I told Brian about how I had interviewed other patients in the BMT unit while we walked up and down through the halls, each pulling our IV poles slowly along side us.
But no one I spoke with attempted to do what Brian did: He “walked” a marathon on his floor!
I asked Brian if he would email me and share his experience with my readers. He said that he would–and he did–so I will post that for all of you to read tomorrow.
I left inspired and energized!
I’ve met some incredibly brave men and women over the past two weeks! And I’ve gotten to see and do some interesting things. Thursday before the meeting I walked from my hotel a half mile or so to Anaheim Stadium where the major league Angels play. I stayed at the world famous Four Seasons Resort in Dallas. And I had a chance to spend some time in lovely Newport Beach and play tourist on Balboa Island.
Of course there’s never enough time. And I do run out of gas eventually, paying a physical toll for my busy travel schedule and early mornings.
So is it all worth it? HELL YES!
Feel good and keep smiling! Pat