Sunday, July 28, 2013

4 Years Ago...

So four years ago, July 2009, my m-spike was found by a rheumatologist who I had been referred to via my primary care doctor. This rheumatologist told me this monoclonal protein was not really a rheumatological finding, but a hematological issue. He then sent me to a hematologist/oncologist to have the monoclonal protein evaluated further. I actually was organizing my bags of medical records and found what I wrote down during this phone call ...


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My note taking skills have not improved since then! I hope my spelling has? ;)
 
 
In August 2009 I met with this general hematologist/oncologist who told me I either had multiple myeloma or monoclonal gammopathy of uncertain significance. I had to have more blood work, 24 hour urine collection, and a skeletal survey. I met with the hem/onc at the beginning of September and was told it was in fact MGUS, and not full blown multiple myeloma. A definite sigh of relief! He told me I needed to follow up with him in 6 months to repeat the 24 hour urine and blood work. This doctor was very nice, but not a myeloma specialist... plus he reminded us a bit of Rain Man. ;)

So my family members thought that it might be a good idea to see a specialist right downtown. My sister was able to get recommendations from doctors she works with...and Dr. R got the most votes! November 2009 was my first appointment at DFCI...at the old building which is so strange to think about - how different that building was from the gorgeous new building that opened a few years ago. And well, the rest is history.

A little update of what's happening currently: Last week I had my 3 month blood draw and 24 hour urine collection drop off. I meet with Dr. R this week to discuss the results. Most are finalized already and are looking fairly status quo. Hoping for no surprises! Que sera sera. 

Sunday, July 7, 2013

A Short Film About Myeloma




This is a cute little video that I've seen circulating around. Worth watching.

Wednesday, July 3, 2013

My First BMB.... One Year Ago

One year ago today I had my first bone marrow biopsy at DFCI. This was my first bone marrow biopsy ever, approximately 3 years after my initial MGUS diagnosis. On this fateful day, I had no fear. I wasn't worried about the procedure as it was supposed to be a 'simple' aspiration. Little did I know this would be 4 aspiration pulls and a biopsy. This experience turned out to be the worst of my three bone marrow biopsies to date. Luckily, my last two were not so bad. Sadly, my left leg STILL hurts off and on to this day from the nerve damage!


Let's all remember... July 3, 2012 ;)  Bone Marrow Biopsy and Aspiration: Ouch