A decade of Adenoid Cystic Carcinoma-full of living

Cloud-filled sky tonight 

Today was great. I woke up and enjoyed getting ready for work with my husband. At work, I joined my team mates as we participated in a planning retreat for the department. After work, I joined other library colleagues to wish our boss a happy birthday at a local watering hole. I came home to fix a simple supper for dear husband. We experienced a thunderstorm, which brought cooler breezes to our neighborhood. We also watched a 1980's comedy movie, remembering when we first viewed it on post at Grafenwoehr, West Germany (it was West, then). All of this normal, everyday, some might call boring, life experiences took place ten years after my initial surgery and diagnosis for Adenoid Cystic Carcinoma, and is the type of day I hoped for during those dark weeks of treatment when nothing was normal, and never boring. I figure the greatest thing I can give those expert healthcare providers that reviewed my case and came up with my treatment plan is to have a lot of normal days like today. Every one of the days over the past 10 years I am glad I didn't miss (both of my kids' graduation, along with all of their cousins and our close friends' kids; being here to see my kids become the adults we hoped they would be (and more!); the arrival and departure of Cheeky; improvements at work as we continue serving the unique information needs of the same healthcare providers that treated me and thousands of others over the years; a new cancer center rising up on the campus that will treat thousands more in the decade to come; seeing my dear husband every day; visiting with my moms on their spectacular 75th birthdays; laughing with my friends; walking in the grass, under the trees, along the beach, on the city street; doing the chores; fixing the yacht; living the good life...) I am fairly sure that I didn't take everyday for granted before that summer of 2006, so cancer didn't give me this characteristic (I think my mom raised us to embrace a fleeting life.) On the other hand, cancer didn't take anything from me that is a big deal. Yeah, I cope with some different stuff (headaches from the plate in my head, lack of reliable tasting, yearly awareness that the cancer bus can come back for me while being aware that a diesel bus may beat it), but no more so other humans on earth, and a lot less than most. I am a very grateful being, and very happy to still be casting a shadow and sharing the earth with you, my care providers, my friends, and my wonderful family. I am rotten at predictions - can't do lottery numbers, won't try to guess if I get to see another decade. For now, I am very happy to have had the day I experienced, and am looking forward to a regular day again tomorrow. How lucky can one girl be?

Today is the 29th National Cancer Survivors Day...

...but as a nearly 10-year wearer of Adenoid Cystic Carcinoma, I celebrate every day, not just one per year. I wasn't paying attention to the day's arrival, actually. Happened across an announcement on Facebook or Twitter or somewhere. Evidently, many are jumping on the bandwagon - I even saw this message from Social Security. Here is the homepage of the National Cancer Survivors Day Foundation: http://www.ncsd.org . They have registered the phrase "National Cancer Survivors Day", which I guess would be done if one was going to promote such an event. They even have a catalog for official merchandise (but the deadline to order was April 1.) They have a  decent page of links for information on Cancer Survivorship issues: http://www.ncsd.org/cancer-survivorship-issues .  I tried looking up more information about the foundation, but wasn't successful. Since they have been holding this day for 29 years, I figure they know what they are doing.

The world is a big place, and I am glad if someone finds value in this type of activity. For this cancer wearer (and for a couple of my fellow cancer wearers that no longer have active emails - man, I miss them!), I would not like it much if my family or friends paid money to celebrate, Hallmark-style, my having outlived cancer. Or if they do, they know they are doing it for their own enjoyment only. I think the folks that know me well also know I am not a fan of any color of ribbons or merchandise that calls attention to a cause, nor the annual Relay For Life events. If you want to send me a greeting, just wave my way, send me a text, comment on this blog - you don't have to participate in any days or -thons or celebrations in my name, ever. Although, I am up for poking fun at the universe in snarky ways, so if you wanted to establish a cooking contest in my name (me, the one that doesn't have a reliable sense of taste, remember), have a great time, I won't stop you. I will join you in the snickering, Muttley-style.

Should you choose to donate money to cancer research, go for it. Be sure to check out the foundation to see if they put most of the funds they raise to the cause they promote, or if they spend a larger percentage towards non-cause administration. If you are looking for an ACC-related organization, I have mentioned my admiration and thanks for the scientific research work being done by the Adenoid Cystic Carcinoma Research Foundation http://www.accrf.org - look them up and see if they would be a group you could support.

And as I foreshadowed in the first sentence, I am coming up on my 10 year anniversary. I figure I am still enjoying life, casting a shadow, and paying taxes, thanks to support from my family, friends, my excellent healthcare providers, and you - my blog reader.

Farewell to a fellow Adenoid Cystic Carcinoma journey blogger

I just learned that Kathryn Seeley died March 23. She blogged her travels with cancer at A Rare Cancer Journey. Her last post, dated January 25, 2016, included a list of "do's and don'ts when it
comes to things to say to a cancer patient (or about me)":

1.  "She lost her battle to cancer."  (Read here.) The implication is that I just didn't fight hard enough.  Nothing could be more offensive.2.  "God never gives you more than you can handle."  This is another annoying cliché.  The God I believe in would never test people to see how much they can handle.  How mean would that be?3.  "Everything happens for a reason."  Really?  Bullshit.  This is one of the most insulting things a cancer patient can hear.  Classic Blame The Victim.4.  "What is your prognosis?"  Well, if it's not good, you've just made the person feel like crap having to explain that they're in bad shape.  And the list goes on....

I thank her for sharing her path for the rest of us to learn from, and for all the effort she put into keeping the world informed and aware.

Adenoid Cystic Carcinoma in the news

Two fantastic bits of news regarding ACC (also referred to as AdCC). 

First one is about the past, in the form of a research article just published online February 12, 2016:

Sweeney L, Vermimmen F, Sinske S. MRI of a recurrent adenoid cystic carcinoma of the trachea, treated with fast neutron therapy. British Institute of Radiology. DOI: http://dx.doi.org/10.1259/bjrcr.20150201 . The open access article describes a 51 year old patient who was operated on for ACC in 1981, and came back in 2011 for neutron radiation therapy for a recurrence. I am feeling for the patient for going through all of that, and for being a fellow wearer of ACC. My takeaway: pay attention to the number of years between procedures: 2011-1981= 30 years, the longest I have ever heard of someone with ACC. I did a happy dance when I figured out the time span. The patient might still be alive - the article goes on to say " Clinically, the patient is doing very well and is not reporting any late side effects of the treatment. "     Assuming the authors' last article update was before they submitted it in 2015, the patient would be 34 years past initial ACC treatment. I am cheering him and me and the rest of us wearing this cancer on with the hopes that more of us experience this longevity. I would welcome meeting this person via email, any day. 

Second one is about the future, regarding a cancer vaccine that is being developed in Australia:   VCA grants include Peter Mac trial of a new vaccine to prevent recurrence of colorectal cancer http://bit.ly/1TSAydA .  News from Australia says a cancer vaccine for colorectal and adenoid cystic carcinoma will be tested on humans in 2017. Professor Robert Ramsay is leading the team http://bit.ly/1pxwnaA . I find the information shared promising, since they say they will be conducting human testing in 2017. Note: this isn't a done deal. Something could change their plans, the human testing might not take place, others' research could preclude what they are studying at Professor Ramsay's lab. I am glad there is any research going on regarding this type of cancer, which is why I share the news I find. 

Adenoid Cystic Carcinoma in the news

1. New research article: Whole-genome sequencing of salivary gland Adenoid Cystic Carcinoma  http://www.ncbi.nlm.nih.gov/pubmed/?term=26862087 . I thank the 18 researchers that reported their findings on the search for potential therapeutic targets on that rotten cancer that I wear. I also thank my fellow ACC-wearers that have been able to donate tumor tissue to be researched. Check with your local library to request a full text copy.

2. Found this recent literature review article in an online journal not indexed in PubMed: Pinakapani R, et al. Adenoid Cystic Carcinoma of the Head and Neck– literature review. Quality in Primary Care (2015) 23 (5): 309-314. http://primarycare.imedpub.com/adenoid-cystic-carcinoma...

3. I found this first-person account of life after ACC, written by Cathleen McBurney: https://www.mdanderson.org/publications/cancerwise/2015/12/embracing-life-after-adenoid-cystic-carcinoma.html . 

4. Bill Allen passed away in January, after wearing ACC for 10 years. He will be missed by many of us in the ACC community: http://www.friedrichjones.com/obits/obituaries.php/obitID/192387/obit/William-G-Bill-Allen .


5. I am glad to read that Carla Offenburger of Iowa celebrated her birthday (and her own life) recently. Her wishes for her 57th year are inspiring! (And I may have to mirror her practice of celebrating a birthday *week* instead of just a day!) This Cheeky Librarian is cheering you on from this side of the Missouri River, Carla! Maybe we can get together sometime and give ACC a run for its money. http://offenburger.com/index.php/on-her-57th-birthday-she-is-celebrating-life-and-new-ways-in-2016/  .

6. In my opinion, the best honor given to an ACC-wearer-that-is-no-longer-with-us took place in January: Precision Decision Surf Festival, in honor of Lorton Mitchell: http://www.coronadonewsca.com/news/coronado_island_news/precision-decision-surf-festival-in-honor-of-lorton-mitchell/article_461eef02-be09-11e5-b477-2ff55d0b5426.html . I hope they had a wonderful time. I looked on their club page http://www.coronadosurfingassociation.com , but didn't see any event photos posted. Their festival in honor of Lorton makes me want to do something equally as wonderful for those that I have said good-bye to over the past couple of years. 

Is it 2016 already?

The long silence hasn't been due to any medical reason, I promise. Life, in all its glorious messiness, continues on. I saw a post the other day that compares life to the game Tetris. That metaphor fits - I have been arranging blocks as fast as I can, and so far have been staying ahead of the game. Back in August, we began working on renovating our basement in celebration of the kids growing up and moving out, only to discover that our house came with a faulty foundation when we purchased it back in 1999.  With expert support from Thrasher , we had our foundation walls straightened and supported, new windows installed, and are now at the point of finishing the basement ceiling, walls and floor. This all involves a monetary outlay almost equal to the original purchase price of the house (go hug your foundation and roof if they are strong - no insurance helps you cover repairing either if they fail on their own!) Whenever anyone asked about plans during the holidays, I just said we were purchasing cinderblocks. We now refer to the house as "the Yacht", and plan to have a launching party when the construction is completed sometime next month.