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Caregivers

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15 04, 2015

Working (and playing) in Boston

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Pattie and I returned home late last night after a whirlwind trip to Boston.  We flew up and back for two days of myeloma related meetings. We were able to sneak out to spend four hours playing tourist Monday afternoon.  I have been traveling to Boston to work several times a year for the past

11 04, 2015

Oops! I Forgot my own anniversary…

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The 8th anniversary of my multiple myeloma diagnosis has unceremoniously come and gone:            April 3rd, 2007. I've been so busy tying up loose ends following our beach party event, I lost track of time.  And then there's the unavoidable therapy fork-in-the-road decision I'm facing.  Honestly, the day and date that

10 04, 2015

Next year’s Beach Party planning off to an early start

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One of the amazing things about the final day of this year's Beach Party: no one wanted to leave!  Instead, the 70 or so remaining patients and caregivers stayed, shared suggestions and started to help us plan next year's event.   Volunteers stepped forward, committees were formed.  Michele and Stephanie even started a Pat's Myeloma Beach

16 02, 2015

Another creative way to get the word out

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There are lots of different ways to get the word out about multiple myeloma.  Here's a fun, silly one, courtesy my newly adopted, North Florida support group doing the mambo for myeloma: https://www.youtube.com/watch?v=laVxATVw7pc There wasn't much room, so I volunteered to move up-front and mambo on my knees.  We're "dancing" to a modified version of

7 02, 2015

LLS announces travel assistance for myeloma patients

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My old friend, myeloma survivor Richard Blustein, shared some great financial aid news with me earlier this week: Another benefit for blood cancer patients. No other organization helps cancer patients like the LLS. This program will benefit those who must travel for specialized treatment. The Leukemia & Lymphoma Society's (LLS) Patient Travel Assistance Program is

30 01, 2015

There should be a therapy road map for late stage myeloma patients

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I've written a number of times about the importance of developing a comprehensive myeloma therapy plan.  Truth is, very few physicians subscribe to this type of thinking.  "Let's see what happens first." That's the mantra. To be fair, I understand why doctors feel this way.  It's almost impossible to predict how an individual patient is

16 01, 2015

Register for Pat’s Myeloma Beach Party NOW!

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Your Christmas decorations are packed away, New Year's Eve hangovers are gone.  Nine weeks and counting; time to focus the event of the year: Pat's Myeloma Beach Party! Join me--and hundreds of other myeloma patients and caregivers--this year on Fernandina Beach, Friday afternoon and evening, March 20th, all day on Saturday, March 21st and Sunday

4 01, 2015

Patient Snapshot: David from Florida (Part Four)

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David, our featured allogeneic (donor) stem cell transplant recipient, has completed the high dose chemotherapy portion of the procedure.  He's also had his donor's cells infused into him a few days later.  David told me he felt surprisingly well to that point.  But something tells me reality is about to set in: Comparing the journey

26 12, 2014

Patient Snapshot: David from Florida (Part Two)

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Time to learn more about our new friend, David.  Undergoing a tandem auto and allo stem cell transplant is no picnic!  That's an understatement! David explains what a difficult decision it would be in part two of his story: I considered undergoing an allogeneic stem cell transplant (allo) for my Multple Myeloma as soon as

25 12, 2014

Remember less fortunate myeloma patients today

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Pattie and I are planning a quiet Christmas day at home.  We'll take Finnegan for a long walk along the beach, catch a movie and I'll cook us a turkey dinner with all the fixings.  As soon as it gets dark, we'll take a drive and scope out the best Christmas lights. Unimaginative?  Boring?  Maybe