Saturday, January 25, 2014

High Hopes

Happy New Year, everyone!  I hope that you all started 2014 with laughter, gratitude and health.  I have high hopes for this year and beyond.  Last year was bittersweet.  A year ago last month I learned that so much cancer had emerged, my doctors at Johns Hopkins had a hard time determining which organ to treat first.  After a tough January/February in Baltimore and more radiation in late June, I was pretty sure my luck was running out.  Then, by late summer, the tumors in my lungs were inexplicably stabilizing, shrinking, or falling off the radar all together.

I find it wonderfully helpful that Bruce Springsteen unknowingly follows my ups and downs with the release of his albums.  Wrecking Ball was timed perfectly with the wrecking ball that hit me last winter (see my Feb. 25, 2013 post).  This month Bruce released High Hopes, just as I try to manage my scan-xiety over the next set of scans at Johns Hopkins on February 7th.

My high hopes for 2014 are not just for me, but for all my Adenoid Cystic Carcinoma (ACC) brothers and sisters.  As many of you know, ACC is a slow growing, persistent cancer that can either go to sleep, hide or grow aggressively at any time.  For those of us who have experienced all three, we live life in the present, from one scan to the next.  I'm cautiously optimistic that my unique status as a bone marrow transplant recipient will prove my theory as to why things turned around for me (see my Sept. 14, 2013 post, N=1).  But for other ACC patients, this is not an option.

Since ACC is so rare, it is vastly underfunded.  The fastest, most effective way to stop this unrelenting disease (people commonly fight for decades) is money.  Well, it just so happens that the Adenoid Cystic Carcinoma Research Foundation, ACCRF is holding its annual fundraiser in the Boston area on March 8, 2014.  ACCRF is making incredible strides toward finding a cure.  They are working with the NIH, building scientific research boards and establishing global research agendas.  The event will be one for the record books and I'm really looking forward to it.  Please visit my fundraising page to learn more about the event and make a donation. 

Last year I joined an online discussion site through the Adenoid Cystic Carcinoma Organization International (ACCOI) -- sister organization of ACCRF -- an all volunteer group that sponsors a global community of ACC patients who share information and support.  Before joining this group, I found very few ACCers on my own.  I didn't really know about the experiences of having ACC first appear in the head/neck, where cancer can start in any gland in the face, neck or throat and travel from there.

Some of the people I've met online have gone through, or are currently managing, unthinkable obstacles.  (Since my cancer started in the breast, I was spared a lot.)  I've never seen a group of people hold each other up, push each other forward, and offer advice and experience that cannot be found anywhere in the medical community.  From Malaysia to Switzerland, China, Australia and all over the US, these people are wise beyond words, inspiring and unthinkably brave. Prior to the fundraiser there will be a patient meeting, where everyone can meet each other and learn of the latest research.  After 13 years, I will finally attend a meeting with others who understand the issues I've faced battling a cancer that few doctors have even heard of. 

I'm very hopeful about this year.  We're getting close to finding a cure, I can feel it. The ACCRF is making incredible alliances with researchers all over the world and I'm excited to see what comes of the exploding world of genomics in medicine.  I was not so hopeful this time last year.  I was nervous about living alone, upcoming treatments with unknown side effects, and my failing attempts to train my cat to be my personal assistant.  That last one hasn't changed, but today at least, I'm in a good place.  Signing up for satellite radio with the 24 hour Springsteen channel -- E Street Radio -- was also good for my psyche.

Looking forward to all good things.


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