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.

Calling fellow ACC wearers - here is an opportunity to be included in a film!

I saw this call for participation on the Attack ACC Foundation Facebook page. The instructions are

for video clips to be posted to the Facebook page. Email Angela Dow Roembke and ask if you can just send her a short video clip (or the link to your YouTube of Vimeo clip that you posted online). This is SHORT NOTICE - get your video to her by Friday, October 23. Quick - hurry - share your story!

-copy of what the Facebook entry included below -

Faces of ACC
Angela Dow Roembke is working on an ACC video offering awareness as to Adenoid Cystic Carcinoma and our ACC Family. ESPN is featuring Angela's journey with ACC in a documentary and she has been kind enough as to include us if ESPN chooses.

Angela is requesting short video clips sharing "I'm a 10 year ACC Survivor" or "Diagnosed with ACC 2010 but misdiagnosed for 10 years"
Questions can be addressed at angelaroembke@gmail.com

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9 years post-diagnosis

Yeah, I know - I just mentioned that in the previous post. I figure this is news of a type to repeat! We just visited one of our favorite hiking sites - the Wichita Mountains National Wildlife Refuge. It was wonderful experiencing summer in Oklahoma again. As I go about my daily life (which is all I wished for during cancer treatment and recovery!), I will leave you with this scene of Mt. Scott to rest your eyes.

Another lap nearly completed

Life post-diagnosis can still be
a mixed up bowl of cherries!

June 30 will be mark 9 years since I received the news that the pain I had had for 3 years was due to cancer. I am so happy to still be casting a shadow and paying taxes. I am blessed to have copious amounts of family and friend support, and a wonderful career at a great world-class medical center that allows me to help others seeking information resources on their own care questions. Getting ready to go out and celebrate another year gone by post-diagnosis. Wishing all dads a good Father's Day, too!

If you or a loved one is newly diagnosed with Adenoid Cystic Carcinoma...

Workmen looking at a car-sized hole
that appeared in a Sears parking lot

I am glad that you found this blog, but very sorry that we have to meet under these conditions. There are links on the right side of the blog for more information on ACC, (also known by the acronym AdCC). If you are new to the topic and still under treatment, searching on the internet may not be the best action you can take at this time. You and your loved ones/support network need to concentrate on healing and staying strong. Listen closely to your professional care team and work towards healing. Increase your health literacy--your understanding of the instructions and information that they give you.  Please contact your local library (it could be a public or medical library) that serves consumer health information, and have them do information searches for you so you will have a focused collection of information to take to your health care professionals the next time you discuss your treatment options and long term outcome expectations. You can locate such a library in your area by going to this link at MedlinePlus:http://www.nlm.nih.gov/medlineplus/libraries.html. 

Since this is a rare condition, finding out others' unique experiences (including mine!) at initial diagnosis may not be the best method for you to plot your own treatment path. In other words, you shouldn't be looking up your own or your loved one's conditions on the internet at this time. Really. I used our medical library's Consumer Health Information Resource Service (CHIRS), and the librarians gave me the health information I needed at the time I needed it, which I carried to my health professionals for interpretation. This saved me from dwelling on individuals' stories, enabling me to concentrate on my own path without any distractions. Of course, once I was out of active treatment, you can bet that I traveled the web and added my voice to encourage others on this path, and still do so.

If you happen to be facing head/neck radiation, some of my coping strategies are recorded at the beginning of this blog - click back to the Fall of 2006 and you will find the posts. Your health professional team may have other suggestions - please listen to them, as their goal is for you to heal in the best possible way.

If you are a cancer survivor/fighter/wearer (I still haven't found a better term for those of us on the other side of initial treatment), I salute you, and look forward to learning from you.

No matter who you are or how you found this blog, I hope some of the information I have recorded here is useful to you in some fashion. And if you want to share, please let me know your story - I will share it with others that read this blog. 

You may notice that the topics lately have been about me living life in my new normal, post-cancer. I trust that you too will be back to living life in your new normal, after healing. 

Do you remember that Pluto time capsule?

I thought of it again today when reading through news alerts, and seeing this one: The Mapping of Pluto Begins Today [March 20, 2015]
They announced that the naming of Pluto landscape is now open: http://www.ourpluto.org/ 

I can't tell you how happy and excited it makes me to think I will be here when they finally crack open that New Horizons Pluto time capsule! I am glad my past-self submitted the photo to the contest for the enjoyment and anticipation of this, my future-self (also glad I did something similar by purchasing one share of Berkshire Hathaway B stock in 2007).

Oh, and the photo - no significance to this post. Just added it because I like it.

Looking forward to 2015

Sand Hills, Nebraska

Long silence, I know. Life has been good - physically, mentally, emotionally. A person can't ask for
more than that. Dear husband and I have been together now for over 30 years (and still like to ride in the car together, even when it is a Mini Sport!). Celebrated anniversary and holidays with the kids - they have grown up to be fine adults, everything their parents could wish for. Extended family is doing well. Work is changing in exciting ways - retirements, new hires, more opportunities to serve the great educators, clinicians and researchers at the finest medical center in the world (how lucky can a person be?!).

Thanks for the great service, Justin!

Even though we lost Cheeky during the spring trip to the west coast, thanks to Justin at Performance Toyota in LaVista, NE, we have not one but two new cars in the garage this winter. We have had some great travels in both cars so far, and looking forward to many more.


I am amazed daily that I have the life that I live, after all that took place in 2006. No matter what takes place each day, that is at the top of my mind when I pause at night, and when I rise in the morning. I have been anticipating 2015 - this is the year that my photo comes out of the time capsule, when the New Horizons craft reaches Pluto. I can remember wondering if I would be here to witness the time capsule being opened... and the way it looks, I will be!

@Lauritzen Gardens, 2014

I wish for everyone a great new year ahead, full of smiles, adventures, connections to the people and the activities you love, with sun in your face and wind in your
hair.

Days Since

from my Dreamdays app

It has been 3000 days since I was diagnosed with Adenoid Cystic Carcinoma. There has been a lot of life in those 3000 days: the world has turned, children have reached adulthood, relationship with my dear husband has deepened, renewed and strengthened connections to friends and family, said farewell to friends and family that have died before me, watched as 8 years worth of health professionals graduated to their next level, watched sunrises and sunsets... I think you get the gist.
I don't generally count the days. It has been great counting years (8 and growing) and looking forward to counting by decades soon. I do wonder though, why I have been able to see 6000 sunrises and sunsets, while others with this crappy cancer didn't, even though we went through similar treatment protocols. There is just too much not yet known about cancer in general and adenoid cystic carcinoma in particular. I will continue to save money as if I was going to live to be 100 (according to Dreamdays, only a mere 17,000 days to go), and look forward to retirement (approximately 5300 days left.) I don't have a clue as to when my last day here will be. Until it arrives, I want to embrace this life for all its worth. Here's to future adventures that will no doubt be recorded on these pages.

Saw this CNN post-had to comment: "My cancer is worse than your cancer?"

Thanks to Geraldine Moriba for both the article (http://www.cnn.com/2014/09/05/opinion/moriba-my-cancer-your-cancer/) and the upcoming documentary called "Until 20". She had sarcoma, which she survived. In the article, she mentions having "survivor's guilt":

"This is the guilt that can occur when someone survives a traumatic event that others do not, such as accidents, war, natural disasters and even illnesses like cancer. Guilt is

Me in Germany in 1985

a complicated emotion."

This is  something I too have experienced, especially after noting the deaths of so many of my fellow Adenoid Cystic Carcinoma wearers, while I keep on keeping on. Her words that spoke to me the most though:

"I have no patience with "my cancer is worse than your cancer" conversations. Cancer is not a competition. Cancer causes us all pain, and having a rare cancer is exponentially devastating, because there is so little research being done. The only remedy is banding together to create awareness and pushing for research funding."

Thank you for your words, Ms. Moriba, and for continuing to find purpose in your experience. And my forever thanks go to those that raise money for the research into stopping my own personal rare cancer. Some of them I have learned about and shared before (let me know additional ones you learn about, please):

Live Like Andi Foundation http://livelikeandi.org/

Adenoid Cystic Carcinoma Research Foundation http://www.accrf.org/

Attack ACC http://www.attackacc.org/

8 Years Since Adenoid Cystic Carcinoma Diagnosis, and Still Going Strong

Some days, it doesn't seem that long. Other days, the day I received the diagnosis from my surgeon seems an eternity away. My heart sends thanks to all you who have supported me on this path I did not ask for, and offer my support to others that walk the path beside me. 

I am grateful for all opportunities that I once thought would have been taken from me: seeing the love in my husband's eyes when I catch him looking at me; witnessing my daughter's graduation from college; watching my son grow into the great man I knew he would be; following my mom's and brother's  adventures of moving into new homes; sharing joy with my friends as they welcome their grandkids; cheering my colleagues on as they retire and begin their lives over again;  and in my role as medical librarian, supporting those researching cancer as well as other diseases and conditions at the medical center.

Someone asked me recently what the hardest part has been lately, since I am not currently undergoing active treatment. My answer doesn't have much to do with having cancer - I think it is pretty much shared by all humans: the hardest part of living is having friends and loved ones die. 

Cheeky - an open letter of gratitude to the CEO of Toyota Motors

(Posted here since I have not yet been able to locate a direct address for Mr. Toyoda.)

To: Akio Toyoda, CEO of Toyota Motors

As a member of a long-time Toyota owning family, I want to thank you and your expert professionals on creating the wonderful car that was in our family until an accident took her from us on May 22, 2014. Even though the loss of the car was traumatic, all of the Toyota professionals we came in contact with reminded us why we owned Toyota cars in the first place: the people and the machinery are the highest quality all around!

In 2008, after living through head & neck radiation and two surgeries to treat cancer, my husband joined me in celebrating life by buying a 2008 5.0 Release Series Scion xB from Dennis Gormley at the Performance Toyota/Scion (http://toyotaoflincoln.com/) of Lincoln, Nebraska. We named her Cheeky, to go along with my nickname of the Cheeky Librarian. The Scion xB fit our family perfectly - it came with a factory-installed sun roof, it came with a manual transmission, and the tall men in my family could easily sit in the front and back with no space problem. No matter how bad a day was, I knew I could walk out of work or home and have a big smile when I saw Cheeky parked, ready and waiting for adventures. She was her own parade. I wrote about some of the adventures over the years on my blog (http://cheekylibrarian.blogspot.com), and posted photos on my Flickr account (https://www.flickr.com/photos/bibliotek/).Driving a Scion is never boring - it's the most fun a person can have in traffic. 

My husband and I decided on a driving trip to celebrate our 30th anniversary, and headed for the Pacific coast. We drove through Kansas, New Mexico, Arizona, and California to reach Pacific Coast Highway 1. For 6 days, we drove up and down the coast between Cambria and Marina, playing in the surf and taking lots of photos of ourselves and yes, the car. On 7th day, we forced ourselves away from the beautiful coast to begin the trip back to Omaha, driving through California and Nevada for the first leg of the trip. East of Reno, traffic was stopped due to something in the highway. As we sat stopped, waiting for traffic to clear, we heard the sound of hard-braking tires. My husband said, 'Hang on!', and then the crash. Someone had driven on the shoulder around the stopped traffic, couldn't stop, pulled their parking brake which put them in a spin at 50mph and right up against Cheeky's rear bumper. To say there was a lot of damage is an understatement, but neither my husband nor myself had injuries - your safety engineers earned every bit of their wages. That car did exactly what it was designed to do - absorb the impact and keep those in the passenger compartment as safe as possible.

We had the car towed to the Reno Toyota dealership for evaluation. A man there told us to take it to the Dolan Lexus Autogroup (http://www.dolanautogroup.com/index.htm), since that was where body work was done. It was late evening (around 7:30pm) when the tow truck dropped us and Cheeky off in the lot. Ginger Kraus, salesperson for Dolan Lexus was getting off work, but insisted on taking my husband and me (and all of the contents of Cheeky, since the windows were broken out) to a motel so we could rest and recover. We saw Reagan Riveria, the Service Manager,  the next day and learned that there would be no fixing Cheeky - the damages were just too extensive. We drove away in a rental car, discussing our options all the way back home (which was still 1450 miles away). 

We have loved the Toyota brand since my husband bought a Toyota Starlet in 1981 (that car saw over 300,000 miles on it before the floor gave way - the engine was still purring along). We even owned an American-specs Toyota Corolla station wagon while stationed in Germany in 1987. The 2008 Scion xB, while aimed at demographics younger than our age group, fit all of our wishes and made us feel like kids again. We knew we wanted another one, so I contacted Justin Polland of Performance Toyota of La Vista (http://www.toyotaoflavista.com/index.htm) to find out what the 10.0 Release Series would be for 2014. Justin had to give me the bad news that the 10.0 Release doesn't have a sun roof nor does it come with a manual transmission. Despite those disappointments, we ordered a regular blue Scion xB (with manual transmission, but no sun roof), and expect to get it in July. We needed a car right away, so Justin was able to locate a 2014 Yaris LE, which we bought and are happily driving until we get the Scion xB to play with. The new xB won't be Cheeky - that was a once-in-a-lifetime car for me. But I look forward to getting the new regular Scion xB. Health professionals say that a cancer patient's state of mind is as important as medicine when it comes to healing. As an 8 year cancer survivor (and now major highway accident survivor, too!), I want to thank you and your wonderful Toyota professionals on putting me in a great state of mind daily since February 2008. 

February update

Rainbow on the 1st of November

No big personal news, just checking in. Enjoying the good life here in Omaha. Taking photos daily (it is like I am proving I am still present in the scheme of things!) Finding value every minute at work (our students, faculty, staff, and citizens are the best!) Family is doing well. All of this despite being in the coldest winter anyone can remember for quite a while (I am looking for a head transplant - some days, the cold brings on pain that is just...)

Sending all good wishes to those who wear or have worn cancer, and their wonderful supporters and caregivers (professional and otherwise). Here's to some warmer weather, somewhere, for us all.

Catching up

Cheekymobile on New Year's Eve 2013

So 2014 has been around a couple of weeks, and seems to be behaving itself for the most part, at least for me and mine. To review:

1) Moment of irony - my baby brother (ok, only a year and half younger than I) had to get his first of two cataract surgeries this week, yet I am the one they watch for cataracts due to the radiation I received in 2006! Once again, this illustrates that all that is watched for in cancer patients is not necessarily what is found. Little brother is doing fine, mostly thanks to his wonderful wife and excellent eye surgeon (plus, he is made of the same sturdy stuff that I am, after all!)

2) Spring travel plans are being made to celebrate 30 years of being married to a wonderful guy. All we know at this time: it will involve the ocean in some form. Past that, we are still figuring it out.

3) I didn't make any resolutions, so I don't have any report on keeping or breaking same.

4) Still using Mention.net to monitor news information about Adenoid Cystic Carcinoma. I will post recent news next.

5) Family, friends, and fellow ACC wearers seem to be doing pretty well at the moment. It is really great to just catch up and talk, leaving the big C off in the corner where it deserves to be. 

Farewell to a great ACC wearer and leader of cancer survivors

Alicia Almanza passed away on Christmas. Her funeral was on Tuesday - here is the announcement from the funeral home (I think the acronyms are - CPD for Chicago Police Department, CFD for Chicago Fire Department) . You can read about Alicia's story and learn more about her organization's fund-raising efforts at this site: http://attackacc.org/ .

On the Adenoid Cystic Facebook site, the family posted this request: "...one simple request for anyone who was touched by my sister Alicia.
Please jot down a favorite memory of Alicia or simply how she inspired you in your life. There will be a box at Alicia's services for memories to be added. Next Christmas, our family will open your personalized notes in celebration of Alicia's life. Together we will reminisce about the amazing gal who changed us all in such a beautiful way!

Personal messages can also be mailed to:

Alicia Almanza
C/O Loving Leedy
PO Box 557983
Chgo IL 60655

Please share this message and thank you for all the love and support showered upon our family."

Farewell 2013, welcome to 2014

Evening sun, December 31, 2013

This has been a year of loss - relatives, fellow cancer wearers, and friends. Maybe this is something that should be expected after completing my first 5 decades of life, but experiencing it doesn't come any easier with the knowing. Sending supportive thoughts to you if you or your loved ones are newly diagnosed with cancer and happened across this blog - let me know if I can hunt down any information that will be of help to you as you make decisions. Sending love and hugs for you if you have experienced loss of any kind, and wishes from me that you and I have brighter days in the new year ahead. Sending grateful messages of appreciation from the depths of my heart to all of those who continue to support me in my travels in this life, and I look forward to reciprocating that support ten-fold. May we all have more love and health in the new year, with few troubles and a lot less loss.

Cancer sucks, thank goodness people are wonderful

Alicia Almanza has had ACC for 22 years, and is now in the hospital. Her friends (the entire ACC world, I am thinking) have gathered on Facebook to post luminaries for her tonight (but if you want to post one, go for it no matter what day you read this): https://www.facebook.com/events/759284170752323/.
Other pages that are supporting Alicia: https://www.facebook.com/pages/Hearts-United-for-Alicia/520880337933814 , her own page https://www.facebook.com/alicia.almanza.1?fref=ts , and the website that her family has managed (along with raising thousands of dollars for research on this rare cancer) http://www.attackacc.org/aliciasstory.htm.

It is so great to see people pull together to support a person going through tough times, be the times due to illness or some other type of disaster. My heart is with you and your family, Alicia. Thank you for all you have done for the rest of us wearing this cancer.

November 2013 thoughts

This month has been pretty busy, offering less time to post, and my heart and spirit have been hurting: the world lost a cancer survivor advocate-Jeanne Sather, of http://assertivecancerpatient.com has died. I will write more about Jeanne in a future post. 
Update on 12/27/13 - I just went to visit Jeanne's webpage, and found solace in the comments from others that she helped. I think there was a memorial held the middle of this month - I didn't get word about it. I wanted to record here how much her friendship meant to me, through the terrible dark days of radiation therapy and beyond. Her humor and view on the world kept me going, as she did for many in the world. 

Update on fellow ACC wearer Shane Leonard

I wrote about Mr. Leonard's story back in 2012 http://cheekylibrarian.blogspot.com/2012/04/adenoid-cystic-carcinoma-in-news.html . His story recently hit the Attack ACC facebook page, so I went out to see if any other information on his progress was out there.

Up for the task

I located his LinkedIn page, which took me to his Twitter feed https://twitter.com/shane_w_leonard . Way to go, Shane - he is at Stanford! Here is another story about his mentorship with an MD Anderson physicist and how that led to his studying at Stanford: http://www.mdanderson.org/newsroom/cancer-newsline/cancer-newsline-topics/2012/mentoring-cnl.html . Keep on keeping on, Shane. A whole new bunch of people are out here, cheering you on, thanks to your story hitting the Attack ACC Facebook page this week: https://www.facebook.com/adenoid.cystic .

Adenoid Cystic Carcinoma in the news

Winter's nearly here

I saw a tweet from Mark Bellinger of the News Channel 5 in Nashville, TN, that appears to say he is dealing with ACC like many of us: https://twitter.com/NC5_MBellinger/status/393459347117731840 . Sending you good wishes, Mr. Bellinger. Let us know if you need information on this - you are not alone in your fight!

Some of the folks fighting keep up with each other on this Facebook site, managed by Attack ACC (a link to that organization is on the right side of this blog): https://www.facebook.com/adenoid.cystic . I hope you can get to the page and take a look at it without having a Facebook account - not sure on that, though. Let me know if you have trouble seeing it.

I also saw the coolest story about a fellow ACC wearer that I have written about before (http://cheekylibrarian.blogspot.com/search?q=babao), who is one of five winners of the Dove Men+Care contest - Gerald Babao,  who will be running in the New York City Marathon, AND has his own 5k coming up that raises money for the ACCRF! Here is the story about Mr. Babao and a fellow contest winner, Jonathan Vogel: A bond tht will keep on running (by Reid Creager) http://www.charlotteobserver.com/2013/10/25/4411575/a-bond-that-will-keep-on-running.html#.UmxTZZRMRro . You can register for the upcoming Wannabe Cancer-Free 5k at this site: http://www.wannabecancerfree.org. Congratulations on winning in so many ways, Mr. Babao!! And thanks for raising money to research this stuff that we wear daily.

Grey Matters conference thoughts

Fall day

Yesterday was a special day, but I am not sure I can fully explain how special it was and still is to me.

I was invited to speak about locating quality health information on the Internet at a conference for brain tumor patients and their caregivers.  The last session of the conference was open questions to a panel made up of all speakers, including me. I sat next to my very own radiation oncologist (the one that worked so hard with me in 2006 for 6 weeks to eliminate any growing tendencies in my residual ACC cells!) and other experts on surgery, neurology, social work, and psychology. No one asked me any questions--that was ok. I knew I was witnessing something very special as I heard the questions and answers start flying. It was an honor to see the care flow in tangible ways, especially after the last couple of weeks when health care discussions have stalled our entire Nation. The care that the health professionals included in their answers to some very, very hard questions was wonderful to see, as was the relaxation, relief, and determination in the faces of the patients and caregivers when they heard the answers.

I meet with health professionals daily at work as a fellow faculty member and part of the larger organization that is our medical center. I get to visit a handful of them as a patient, when I have a different relationship with them, very personal and vital to my life. What I witnessed yesterday was something even greater. I watched as other patients and caregivers, walking paths similar or much more difficult than my own, interacted with dedicated health professionals, together working towards solving chronic or returning conditions with the goal of improving or maintaining the ever precious quality of life. Health is personal and requires a lot of care. I am so proud to work at a place that hires professionals that know that and practice it as a way of life. And I am even more awed at the strength of my fellow humans who are living gloriously, casting shadows daily.

Sometimes having a slow cancer is like living in a Dish Network commercial

My family members and friends have my best interest in mind, but sometimes the information they forward to me is a bit scary, and I end up feeling like the middle guy in the 2013 Dish Network commercial, where he wants to hide under the bed to stay safe.

Just when I think I have a handle on how many different things can happen with Adenoid Cystic Carcinoma, fresh news knocks me out of my librarian objectivity and I end up silently yelling in my head just like the Dish Network guy yells out loud. I felt that way when I had been having a sore leg recently and coincidentally received a message that included this latest case study on ACC of the leg http://www.ncbi.nlm.nih.gov/pubmed/?term=24072374. If I had been truly concerned, I would have contacted my wonderful family physician (because she takes care of my whole being) or friendly neighborhood head/neck surgeon (because he is familiar with my cancer path, though not necessarily the anatomical body part in the research article), and asked if I needed to be evaluated. Then I would have used my library's consumer health information service to request information on any diagnoses that I might receive (since I am too close to the situation to look up my own information - I really need an unbiased, objective eye to judge what information would apply to my conditions). If you find the need to locate consumer health information services near you, please use the links on the right side of this blog to help you out, or contact me and I will get you in touch with expert librarians in your area.

Don't hide under the bed. You need to know. Please use a medical or public library and ask a librarian to help you search for information on all topics of health. They can help you locate information to take to your health care provider team for discussions that will lead to decisions about your and your family members' care.

A sidebar - the case study I link to above has a line in the abstract that says: "There is no literature to date that discusses its incidence in the lower extremity."They should have had a librarian on their team - I located this article from 2002 with just a basic search: Cylindroma of the leg http://www.ncbi.nlm.nih.gov/pubmed/?term=11910240 . (Cylindroma is the old term for Adenoid Cystic Carcinoma. Other terms used in the research literature for this condition, according to the Medical Subject Heading for Adenoid Cystic Carcinoma:

• Adenoid Cystic Carcinoma
• Adenoid Cystic Carcinomas
• Carcinomas, Adenoid Cystic
• Cystic Carcinoma, Adenoid
• Cystic Carcinomas, Adenoid
• Adenocystic Carcinoma
• Adenocystic Carcinomas
• Carcinoma, Adenocystic
• Carcinomas, Adenocystic
• Cylindroma
• Cylindromas

Annual physical update, and good wishes to a fellow story lady with oral cancer

After annual physical, go outside and play!

So I have had my annual physical, complete with MRI (first one in a couple of years) and a chest x-ray. All is good - I got the NED stamp of reality from my head/neck oncology surgeon. (Remember: NED means 'no evident disease'). It was great seeing the team that have been beside me on this walk since 2006. I see them as a fellow educator around the University, but seeing them as their patient adds a humbling aspect to our relationship. I have the go-ahead to wait 3 years for another MRI, as long as I see the team every fall to see how things are doing. I am not thrilled that autumn is my time to face the scan-dancing, as I used to look forward to this season, but I can deal with it.

I saw these links to the story about Marie LePage in Cincinnati, OH/Boone County, KY today while searching for news about oral/head/neck cancer or ACC. Ms. LePage has been dealing with oral cancer with over 30 surgeries/procedures over 8 years. She is not a victim, for which I have great respect for her - she has even started the "Strange Cancer Supper Club" to offer support for anyone going through cancer issues, so they are not alone. Unfortunately, the treatment to fight her cancer this week entails a glossectomy - removing her tongue, and ultimately her ability to speak. So she will have to stop being the 'story lady' at her wonderful library system, but will continue to work in other areas of library program development. Her story spoke to me, so I wanted to share it here. Thinking of you, Marie LePage. Wishing you and your family all the best as you enter the next level of cancer treatment. And I thank you for shining a light for us others that walk similar paths with you! I am taking your advice to heart -

"Please tell people you love them. Tell them you're proud of them. Say thank you for everything, even if no one's around. If a bird lands on a flower at just the right moment, say thank you to God. Read a story to your kids. Read a story to your husband. Read stories to anyone. And listen – there are people who have a voice but don't have anyone to hear them."

And especially, "celebrate everything"!

http://prnewsdaily.com/mums-the-word-for-storyteller-after-oral-cancer-guardian-express-2/

http://www.usatoday.com/story/news/nation/2013/09/29/tongue-cancer-victim-says-what-matters-before-surgery/2889289/

Adenoid Cystic Carcinoma in the news

Tactiles

The annual run/walk fundraiser held by Attack ACC posted on Facebook their photos from the Meet & Greet this past Friday night. Take a look at the fellow ACC-wearers, and know we are among some of the strongest people on earth (yeah, I am biased.) Family and friends are shown there, too - cheers to you all for walking the path with us!

A fundraiser has been set up for Jaime Nichols, who has been fighting ACC since 1999: http://www.battlecreekenquirer.com/article/20130830/NEWS01/308300020/Lakeview-class-rallies-one-its-own?nclick_check=1. The gofundme site of the Jaime Ward Nichols Support Group has raised over $8500 towards their $9000 goal: http://www.gofundme.com/3sg8po . Sending supportive thoughts Jaime's way, as she is facing her end times. I am so thankful that she and her family have such a crowd of friends and supporters.



I saw a cool craft business site, owned by a fellow ACC survivor: Cottage Nest http://www.cottagenest.com/ . The online shop is located on Etsy: http://www.etsy.com/shop/cottagenestinteriors . She gives me hope to ramp up the online footprint of my jewelry retail business!



This story isn't about ACC in particular, but head/neck cancer in general:

Head, neck cancer care being concentrated at teaching hospitals, academic centers
http://www.medicalnewstoday.com/releases/265686.php
Referring to a study by Elliot Abemayor, MD, PhD, of the University of California, we who are being treated for head/neck cancer are being admitted to teaching hospitals more than other types. This means that if someone wants to get residency training for head/neck cancer, they will probably be aiming to match to a residence program at a teaching hospital. I would have figured this study would discover these findings, but maybe because I was treated (and continue to be 'watched') at one of my local teaching hospitals. The numbers of inpatient hospital stays for head/neck cancer in 2010 is what really caught my eye: 37,354, up from 28,862 in 2000. Bunch of us out there, folks.

Thoughts after a regular MRI of the head/neck

Lilies

I was able to skip last year's 'annual' MRI, but the doctor stressed that I should get one this year, so I did. Since adenoid cystic carcinoma generally comes back in other areas (lung, liver, bone), I haven't been too worried about something cropping up in the original tumor site (my left cheek, remember?). That may be my faith in the voodoo that is modern day radiation therapy, or just blind cussedness - your call.
Anyway, as I spent an hour in an MRI tube, I wondered again what is going on during the scan that makes that terrible racket. I located this description on How Stuff Works, and share it here in case you too have wondered.
Tips that I can share after spending time in about 10 MRIs since the cancer diagnosis in 2006:

• Ask for a washcloth to put over your eyes (helps keep down the claustrophobia feelings - if I can't see it, it isn't there). Works for horses being led out of a burning barn, too. Just saying.
• If anxiety is an issue (ahem, yes, because generally fears of returning or existent cancer are floating through your head while you are in the scan), let health professionals know before your scan day so you can get medication to help get you through the procedure. I have not had to ask for this, but I know it is available for the time when I would need to.
• Trust your professionals that get you set up for the scan - they know what you are doing. Ask for updates over the speaker, if that will help you. Or ask that they don't give you updates, if you would rather zone out during the hour-plus that you are being scanned. You are never alone while being scanned - they give you a button to push if you need help, and they can talk to you and hear you during the scan.
• Earplugs - bring your own, or ask for theirs. Do not skip earplugs - trust me.
• Forget anything you ever saw on a TV show about some actor in a drama getting an MRI. Your scan will probably be set up differently. Mine involves a lot of padding around my face and a frame to hold my head in one place - haven't ever seen it, since I have the magic washcloth over my eyes, so it doesn't matter (but they never show that kind of set up on TV, huh.) Your mileage may vary.
• If you think you might be too wound up (or too relaxed due to medication) to correctly fill out your paperwork the day of your scan, and you are close to the medical center, go earlier and fill out the paperwork when sober/less-stressed. (Ask if this is possible where you get scanned - it is for me.) It will be one less thing to think about the day of the scan. I keep hoping that the electronic patient record eliminates this step, but for some reason it hasn't yet where I get care. (I secretly think that this is their test of my mental abilities - "let's see if she puts down that appendectomy in the correct year THIS time...")
• Ask if you can get a digital copy of your scan. I have requested this before (didn't yet on this one), and found it pretty fascinating to see the scans of my head/neck scroll by on my desktop computer. 
• A really nice thing - a friend texted that they were thinking of me while I was in the scan, so their text was the first thing I saw when I got back to the dressing room to reconnect with real life. Really, really great thing to do.
• Finally, the best thing I did for myself today was to take the whole day off. I was able to put the scan memories out of my head with wonderful time together with Dear Husband, and talking with my beautiful Mom. Doing what really mattered lessened the scan's impact on my day and regular life. 

I should find out scan results during my upcoming annual visit with the doctor. Not too concerned - if it is positive, I will deal with it. If it is NED (no evident disease), I will continue on my current path. Right now, it is all like a Schroedinger's cat paradox.

Treatment side effects for Adenoid Cystic Carcinoma:Trismus

Origami

Trismus - when the jaw muscles contract and you can't "open wide". According to the Merriam-Webster, "spasm of the muscles of mastication resulting from any of various abnormal conditions or diseases (as tetanus)." So, also known as 'lockjaw'. My experience with it is because of the initial surgery on my cheek, as well as the follow-up treatment regimen of radiation. Both have injured my jaw muscles (though my family doubts that, since I still talk a LOT.) To keep the muscles flexible, I have a stack of 16 tongue depressors that I chew on. Check with your doctor and/or physical therapist for whatever method they want you to use. The Oral Cancer Foundation has this page on Trismus, its causes, and methods to keep it at bay: http://www.oralcancerfoundation.org/dental/trismus.htm.

People that haven't had cancer treatment also can face trismus. If you can open your mouth and put three fingers vertically in between your top and bottom teeth, you probably don't have anything to worry about. If you can't, check with your health care provider about what the cause might be and how to fight it. 

Be open to life and love

I saw this story in the news yesterday, and figured I would share it:

The Ghosts of Ovarian Cancer http://www.washingtonpost.com/blogs/she-the-people/wp/2013/07/30/the-ghosts-of-ovarian-cancer/

The author, Donna Trussell (her new blog), talks about her perspective on cancer in her life, 12 years after a diagnosis and initial treatment. She has lived longer since diagnosis than many. And she talks about how she felt about cancer:

"How did a debilitating, life-threatening disease become a journey, an adventure, a mystical calling? I suggest we demote cancer to what it really is: proof of our human frailty. Survivors go on with their lives despite cancer, not because of it."

I also love her comment when facing a questionable result in a recent check up:

"“Let’s think positive,” the nurse said. “Oh yes,” I said, “because that works so well.” My sarcasm made us both laugh."

I have heard health care professionals, my colleagues, and my own family say that about 'thinking positive', and I react the same way, with total sarcasm. Thinking a certain way doesn't cause nor fights off cancer - sorry to tell you that. Also, if you are over the age of 6, we can meet and discuss Santa.

Her final line in the story: "But with cancer, you never really go home." Yep, that pretty much says it all. At the same time, though, I can say that I have created a new home, and have been pretty strong about what I invite into that home to be with me. I don't stew about cancer all the time - didn't even when I was going through active treatment. Somehow, I held on to whatever "I" am, and kept it going, despite all the crud I went through, and still occasionally go through. The only thing I hope for is that the "I" hangs around, no matter what else I have to face. 

Since this is a slow cancer (or I have a slow version of it, whichever), I could just as easily expire due to another biological or accidental reason, same as I had going before a cancer diagnosis. The odds of Adenoid Cystic Carcinoma putting me in the grave will increase whenever the mets get big enough to warrant attention again, but until then, I figure I still need to watch out for speeding busses, tornadoes, and cardiovascular disease. 

I have changed how I see my life span, though. Whenever the financial folks are consulted, I generally tell them to pretend I am ten years older, so they will shorten their predictions on what my work-life might include. Also, I make choices to stay closer to what I value, including family time, quality of life, and work-life balance. After staring at the end of things, I never want to forget what really counts as I dive back into the 'living' side of life. 

Adenoid Cystic Carcinoma in the news

Sycamore sky

Received word that Joylee Pentz died on July 20th. I knew of her story facing ACC through the ACCOI, where her husband is a board member. Information on a memorial service can be found on her Facebook page https://www.facebook.com/joylee.pentz, and her CaringBridge site. My condolences go to her family and friends, and to all of us who walk the path she led. Through her story of strength, I found my own, and I will be forever grateful.

Another Adenoid Cystic Carcinoma research article in The Journal of Clinical Investigation:
Whole exome sequencing of adenoid cystic carcinoma
-you can also see the PubMed citation on this article here: http://pubmed.gov/23778141

(citations of other research articles that cover ACC can be seen through this link.)



Live Like Andi Foundation is having their third annual Golf Outing on August 5th: http://livelikeandi-org.gvilink.com/golf.html (that page shows the 2012 information - I located the 2013 information on a Facebook page here https://www.facebook.com/terry.whitesell.7).



Saw this notice from the University of Miami about a Dr. David T. Tse receiving his Bachelor's degree, 40 years after going into medical school early. Some who read this blog may know of him - the news account includes this information that applies to ACC:

"In particular, he improved the ten-year survival rate of adenoid cystic carcinoma, an aggressive form of cancer in the tear-producing lacrimal gland, from about 20 percent to 85 percent by developing a treatment protocol that shrinks the tumor with a high and targeted dose of chemotherapy before surgical removal."

Where does a person go for money to treat cancer?

I saw this fundraising call for donations for Joshua Henderson of Maine, and my heart goes out to him and his family:
https://www.giveforward.com/fundraiser/dcq2/josh-henderson-adenoid-cystic-carcinoma

I know I have mentioned sources of money for individuals before (most recently this month: http://cheekylibrarian.blogspot.com/2013/07/in-case-you-are-considering-fundraiser.html ).

I know that the American Cancer Society has an office nearby (or as near as the database says when I plugged in "Bangor, ME"), and one should call to see if there is assistance for traveling to and from cancer treatment:

Northern New England Region - Topsham, ME, 1 Bowdoin Mill Island, Suite 300, Topsham, Maine 040861240  / Phone: (207)-373-3700 / Hours: 9:00 - 5:00

I know that a ton of money goes into research right where I work - but I am not always aware of funding or assistance for individuals. If you are in a bind with costs and coordination of cancer care, please find a hospital social worker where you are getting treatment and call the local chapter of the American Cancer Society (you can look up your city or zip code on this page: http://www.cancer.org/myacs/index . Donate to individual causes if you can, and if you trust that they are real (allegedly, the opposite sometimes exists). 

Believe me, when I "won" the cancer lottery and was diagnosed with a rare cancer, I figured there should be a check in the mail to me somehow - but it didn't happen then, nor has it happened since. There are 'make a wish' type foundations for adults, like the Dream Foundation http://www.dreamfoundation.org/ , but I would hope that we don't have to wish for cancer treatment money.

Stuff I do differently since cancer treatment

Pretty much smooth sailing, folks, just like this scene last autumn at Lake McConaughy, Nebraska.

Not even going into the whole taste deficit here - pretty much a non-issue, and have moved on. What I will talk about is dealing with the neuropathy and pain from the treatment areas.

Take pillows, for instance. Not a fan. I keep one of those neckbone pillows  handy, propping my head up with it any which way. That gives me enough support to keep from putting the ear that was removed and reattached from pressing into a pillow.

Still taking not-hot shampoos, and not using a hair dryer. Hot water/hot air still make my treated side of the head go ballistic, pain-wise. Getting better at toweling off with a little stronger pressure, though - I have figured out where I can rub stronger and where I need to dab lightly, after all this time.

I am skipping a hat this summer, so far. One, I am not out that much. Two, I think my treated area reacts less (or I care less, who knows?) to the sun. I am carrying one around in the Cheekymobile, just in case (just like having an umbrella).

Using fluoride to 'soak my teeth' about twice a week, but also brushing with it at least once a day (dry-mouth toothpaste the other time). Still have the teeth I started with - amazing!

I continue to 'dance different', meaning when "Great Aunt Edna" (not her real name, and not my aunt) runs over with her arms wide to give a big hug and smooch, I duck and offer my right (non-treated) side, and deflect her right arm down to keep it from wrapping around my neck. I also don't do well with someone coming up on my left side - there, I just gave the bad guys the key to my Kryptonite. You want me to spill my guts about state secrets? Just act like you might smack/touch/kiss/glare-at my left cheek. I will fold like the origami I love to make.

Mobility - still exercise the neck and shoulders to fight against the muscle damage done by radiation (that is some of the damage that takes years to show up, and thankfully, I am around to see what it might look like). I want to keep driving my Cheekymobile for many more years, so looking left and right are on my 'have to do' list. Jaw is holding up well. I still have a stack of tongue depressors so I can make sure I am not losing ground. Some anesthesiologist someday will thank me for it, when they have to create an airway and can actually do it without too much fuss.

Sleeping is still messed up, but face it, probably due to middle age. I can handle that.

Bills have been manageable, especially if I can keep the MRIs down to one every-other year.