Saturday, March 22, 2014

We Take Care Of Our Own

Word has it another storm is on the way.  Just when you think it's safe to leave your house and go to PT to rehab your busted wrist....  Although I'm bumbling through many of life's required tasks with my left hand, I'm still painfully slow (painful being the operative word).  I had the giant pin removed from the hardware that was recently installed to rebuild my wrist, the hard cast is off, and I've started PT.  My fingers are pretty useless and oh so painful, but I'm determined to work hard to resume a normal two-handed life soon.

Thanks to Mary, I made it up to Boston for the Adenoid Cystic Carcinoma Research Foundation (ACCRF) events.   The trip was exhausting, but I'm so glad I was able to meet other patients, the founders and organizers of the Foundation and the volunteers of their sister organization, ACC Organization International (ACCOI).  We shared stories, broke bread and learned about the latest research in the pipeline for a systemic treatment to stop this monster once and for all.  Sound like an unrealistic reach?  I might think so too.  But with what we know about what causes and drives ACC, and with all the scientists who are now working on research models, there's a lot of hope.

Hope is powerful.  So is having people with whom you can share that hope.  Cancer's a lonely journey; all serious illnesses are.  When it's a rare disease, the isolation can be severe.  Meeting people who speak my language is like gaining an instant family.  Or, as Bruce says,
Wherever this flag’s flown
We take care of our own.
Again, to all of you who donated to the fundraiser, my sincere thanks.


Saturday, March 1, 2014

Continuing Education

After studying something for oh, say a decade or more, a person's knowledge should amount to a couple of letters after their name, even if it's not an education by choice.  For example, Kathy Seeley, MPE, Master of Patient Education.  February turned out to be an unexpected course in MPE.  I'd give myself  B- on the PET/CT at Hopkins, which in my case is an excellent grade.  But I also had a crash course in orthopedics, furthering my continuing education.

Both Dr. Hong and Dr. Hales read my PET/CT images before the report was written and said that I have only one spot, still fairly small, that they think should be treated with RFA in the next few months.  All other spots are either stable or to small to measure, and all 2013 treatments were successful.  As usual, the report reads a little more serious because they have to report every little blip they see.  It wasn't the A that I was hoping for, and I'm not sure my theory of N=1 (my transplanted immune system is fighting both ACC and AML) holds up.  But that was a long shot anyway, and it was a pretty good report card overall.

I was about to blog about these results when, on Wednesday, February 12, the day before our biggest snow and ice storm of the 10+ this winter, I slipped on ice in front of my door and came crashing down on my right wrist.  I laid on the ice, unable to move, for 30 minutes waiting for the EMTs, and this began a week of three ER departments, five ambulance rides, and uncontrolled pain like I've never experienced before, and I'm no stranger to pain.  When three orthopedic surgeons used words like "shattered" and "multiple fractures," the pain episodes made sense.  I had to wait a week for the swelling to go down before a surgeon could insert a titanium plate into my wrist and screw my bones to it.  That was 1.5 weeks ago.  I still have a fair amount of pain, but nothing like before the surgery.  I'm hoping my surgeon will clear me for the short trip to Boston next weekend for the events I wrote about in my last post.  Thankfully, Mary's coming with me so she can drive and help me with daily tasks that we all take for granted when we have two hands.  Without her, I wouldn't be able to manage it.  I know a hard cast is in my future but I don't know much more than that till Monday (barring another traffic stopping snow storm).

I'm lucky that this is all temporary and I will eventually recover.  The people I hope to meet in Boston next weekend don't all have this assurance.  The short term loss of a limb is nothing compared to the loss of one or more facial features, or the ability to eat, speak or smile.  Please visit my  my fundraising page and consider making a donation to the Adenoid Cystic Carcinoma Research Foundation, ACCRF.  If you have already donated, thank you so very much.  People with ACC have earned their MPE at very high costs.  We all really appreciate your support.  For those of you who came to my aid these past few weeks, angels await you.