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Tuesday, May 31, 2016

Belated Update

Okay, it's May 31 and I haven't updated my blog since right after the amazing 5K event.  I didn't want to miss another opportunity to post in the month of May, so here goes.  This will be short, since there is not a lot of news about myself to post.  My visit to the Farber last week went well, as I still seem to be in remission, thank goodness.  However, as I posted last month, there are some indicators that bother me a bit.  I already mentioned the increase in my bone marrow biopsy plasma cell count from 6% to 8% over the last year, but there are a couple of other things that are beginning to bother me.

First of all, my red blood cell (RBC) counts are dropping.  My hematocrit (HCT) dropped from 45.9 to 41.2 since last month.  It's still above the minimum level of 37.1, but I don't like the trend.  It's been really high since my iron infusion about a year and a half ago, but it's going in the wrong direction now.  I had stopped taking iron pills since my last prescription ran out, but I'm now back on a daily dose to try to reverse this trend.  I also notice that I get tired more easily and am taking more mid-day naps.

Another alarm bell for me is that my light chain Kappa numbers have been steadily increasing over the last year.  Last April, they were at 17.2 mg/l, and this April they had climbed to 27.0.  The normal range maximum is 19.4.  As you may remember, I have IgA Kappa MM, so my Kappa count is of some interest to me.  I talked to Mary McKenney about this last week, but she seemed unconcerned. Really?  Hmmm.  I think with all this going on, I'm going to have a chat with Paul Richardson some time in the near future.  I'm not panicking about these things, but I'm keeping a close eye on them.

The latest issue of the Farber newsletter revealed that Paul Richardson received the MM Achievement Award at the 2nd World Congress on Controversies in MM, held in Paris on April 28.  The award was awarded jointly to Paul and Antonio Columbo of the University of Torino for "innovative research and translational clinical work that has contributed significantly to the development of new therapies and important progress in MM during the last decade".  That's my doc!

Wednesday, May 4, 2016

Race Day

Team Epic for Bill Tent

The night before the big MMRF 5K run/walk race, we were a bit nervous, as we were about $450 short of our fundraising goal of $10,000.  But our son, Jason, was a savior.  He drove up from Connecticut Saturday night and dumped donations on the kitchen table that he had collected from his co-workers that day at his restaurant, Joey Garlic.  It came to $602 in cash!  I was stunned.  It was overwhelming, as I fought back the tears.  Those donations put us over the top.  We had done it!  We all went to bed that night knowing that we had reached our goal.  It was so very satisfying.

Wally, the Green Monster
Sunday was the big day.  We all converged on Carson Beach in South Boston for the race by 7:00 am (yawn).  We were thrilled that we had our own tent for Team Epic for Bill.  These tents were only made available by the MMRF for their biggest fundraisers.  There were 105 teams registered for this event, and Team Epic for Bill was the 8th largest fundraising team!  I'm very happy and grateful for all the contributions we got from our supporters.

Pam's sister, Michelle, provided Team Epic for Bill tee shirts for all of us to wear.  What a nice surprise!  Now we could stand out among the multitudes.  Thank you so much, Michelle!

There were about 2,500 runners/walkers there, which beat the previous record of 2,100 last year.  They also raised a record $520,000 for this event, surpassing last year's previous record of $475,000.  This event keeps growing every year. 

Paul Richardson & dog
My oncologist, Paul Richardson, is the honorary chairman of this event, and he gave an inspirational talk before the race about the current status of multiple myeloma research.  Two new drugs have been approved by the FDA so far in 2016, after a record number of approvals last year.

Paul comes to this event every year, and he ran this year with his dog.  I saw him on the course, and he was having a very respectable time.  I met with him afterwards and he told me that I look really good.  I found that very encouraging.

Our team then congregated at the starting line for this event.  The serious runners went to the front, while us slackers who were only walking hung back at the end.  We had several good athletes on our team, including Pam's cousin, Sam Whatley, who finished 14th out of 743 runners with a time of 20:08!  Wow!  I talked with Sam at the brunch after the event, and he told me that when the going got rough during the race, he thought about me and what I went through with my stem cell transplant, and it gave him the strength to push on.  Oh my!

Many of the participants decided to walk with me, for which I was very grateful.  We started near the end of the line, after all the serious participants were on their way.  I have to say that it was a very special time for me having my family and close friends there supporting me and walking with me on that wonderful day.  There was a part of me that had wanted to run instead of walk, but my knee told me not to.  In retrospect, I'm glad, because I had a lot of my family and friends surrounding me as I walked the course.  I was elated.  Since we were near the end, my only goal was to finish before the clean-up truck came along to push me over the finish line.  I'm proud to say that I did.

 Afterwards, we hosted a brunch at the Coppersmith Restaurant in South Boston.  It was an awesome venue.  We had our own room with a great brunch menu.  Coppersmith was voted as the best place for Bloody Marys in Boston.  I had one, and I agree.  It was a great way to thank all the people who supported us in this effort.

This was one of the amazing events in my life.  I will never forget the overwhelming support from my family and friends.  Life is good!