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Wednesday, April 27, 2016

Latest Results

Monday I paid my my monthly visit to the Farber.  The news is still good!  My blood work came out fine and I got the printout of my annual bone marrow biopsy pathology report.  In my last post, I mentioned that the bone marrow aspirate contained 7% plasma cells.  I lied.  Actually, it was 8%.  Last year it was 6%.  I asked Mary about this, and she said that Paul Richardson had reviewed the report and said it is no problem. Whew!  I still find that a little worrisome, however, since the standard criterion for complete remission is less than 5% plasma cells.  I might just have a little chat with Paul about this one of these days.

The best thing about the bone marrow pathology report was the conclusion:  "Diagnostic features of involvement by a plasma cell neoplasm are not seen".  I find it amusing to read doctor speak.  Notice the circumlocution and passive voice of this sentence.  It's as if the author doesn't want to take actual responsibility for this conclusion and chooses to cloak it in obfuscatory language (like what I did just now).

So what is a neoplasm anyway?  It sounds a bit ominous.  The term "neoplasm" is medical terminology for abnormal cell growth.  So why couldn't they just have said simply,  "We found no abnormal plasma cells"?  That would be straight to the point.  I guess that wouldn't sound erudite enough for the medical community, so they have to use pompous officious-sounding verbiage to impress one another.  I've gotten used to reading this kind of crappola over the last number of years of research and trying to translate it into understandable English.  Anyway, hurray!  I'm closing in on 5 years since my initial diagnosis and it's all good!

Only 4 days to go until the MMRF Boston 5K Walk/Run event in South Boston!  I'm overwhelmed that we have over 30 registered participants who plan to either run or walk with us in support of Team Epic for Bill on Sunday.  I'm also pleased that our fundraising is going very well, with over $9,000 of contributions to date.  We're still a little short of our $10,000 goal, but I am delighted with the outpouring of support we have gotten for this worthy cause.  I am very thankful for the many family members and friends who have made donations.  Because of our successful fundraising efforts, the MMRF has designated Team Epic for Bill as a "Top Team", so they will provide us with our own tent where our team can congregate.  Great!

It's still not too late to make a donation!  Here is the website:

The weather is supposed to be good on Sunday with no rain and temperatures in the 50s.  This should be a lot of fun!  After the race, we will host a brunch gathering at the Coppersmith restaurant in South Boston.  It's a way to say Thank You for those who are taking the time and effort to participate in this event.

Sunday, April 10, 2016

Florida Trip

Last weekend, we traveled to Fernandina Beach on Amelia Island, Florida to attend Pat Killingsworth's Myeloma Survival School.  It was a beautiful setting and what a wonderful time it was!  About 140 people attended from various parts of the country for this weekend event.  It was an awesome tribute to Pat's life.  Pat's wife, Pattie, was amazing!  She was so outgoing, upbeat and cheerful, and she made everyone there feel comfortable.  I can see why she was such an wonderful caregiver for Pat.  Her optimism and enthusiasm must have helped him greatly during his hardest times, and I'm sure she gave him extra energy to deal with his nearly constant pain and suffering. Wow! 

We met a number of very interesting people.  All were knowledgeable and well-informed.  It was an intellectually and socially stimulating experience.  I learned a lot by talking with patients and attending some of the seminars.  For example, some of the recent advances in gene expression profiling were very interesting, which could lead to individualized targeted therapies in the near future.  The Saturday night dinner was a tribute to Pat's amazing life, and it was a very fitting closure for those of us who miss him so much.  I hope and expect that they will continue to hold this event in years to come.  If so, we'd like to attend.

On Sunday, we drove down to Cape Coral, near Fort Myers, to visit with my college roommate, Steve, and his wife, Sue.  They have a really nice winter home on a canal which connects to the Gulf of Mexico.  It's a beautiful place.  We had a wonderful visit.  The weather was great!  Since it was cold and snowing in Boston then, it was a really good time for us to be in Florida.

Scott and Gretchen
We took an excursion on one of their friend's boat to cruise out into the Gulf.  On the way, we stopped for lunch at the Boat House Tiki Bar and Grill. They had a really good singer entertaining that day.  Gretchen started a conversation with him (surprise) and he happened to have family in Massachusetts.  When he told us that he grew up in Burlington, Mass., Gretchen told him that she did also.  It turned out that he graduated a couple of years behind her.  As an amazing coincidence, when she asked him if he knew her younger brother, John, he gasped and said, "Are you Gretchen?"  His name is Scotty and his brother is one of our best friends, Jeff Williamson.  Scotty spent a lot of time in John and Gretchen's home when he was young.  He told us that John taught him to play the guitar.  There were lots of hugs after that.  It's really a small world sometimes!  That was too much.  It's hard for me to get my head around that.

My bone marrow biopsy results are back, but when I try to access them through the Patient Gateway, there are no specific results posted.  I guess I'll have to wait until my next Farber visit to get the full results.  If I was really anxious, I would call, but I think I can wait.  One number that they did publish was the percentage of plasma in my bone marrow.  Last year it was 6%, but this time it is 7%.  That may not be a big deal, but that's not going in the right direction.  I'm slightly anxious to get the full report.