Saturday, November 03, 2018

Just an adenoid cystic carcinoma wearer sharing happiness with the world


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I am reaching out to all of the healthcare professionals and healthcare professional students that have had contact with me and other cancer patients. This head and neck cancer patient thanks you for your dedication, and resilience during the long dark hours required on the pathway to attaining your professional expertise. 

L-R: 2nd place winner & wedding officiant, groom, & bride
in Mountain Home, Idaho
Thanks to you and your grit, I kept my grit and made it to see my daughter and new son-in-law happily married on October 20th. We drove to Mountain Home, Idaho, and witnessed the wedding as it took place before the award ceremony at the World IHGF/SAAA Highland Games. (If you are interested in how the games scores went: the groom came in 6th, and the wedding ceremony was conducted by the 2nd place award winner!)


Reception in Lincoln, Nebraska
One of my colleagues asked me what it felt like to have a married daughter. The flood of emotions at that moment kept me from saying what I truly felt – like I had won the biggest lottery in history. During my own dark days of treatment during 2006, I was hoping to make it to high school graduations, afraid to contemplate future weddings. Yet here I am, 12 years later, still casting a shadow and paying taxes (grin!). And I know I didn’t do it alone. I will never know how my personal cancer path influenced or impacted the many health professionals and health professional students that joined me along the way. Nurses, physicists, physical therapists, family medicine physicians, otolaryngologists, medical nutritionists, medical librarians, my family, my friends… I only hope that this message reaches some of them and lets them know that I benefitted from their hard work, and they made my life better through their care.


If you are a healthcare professional or student that works with cancer patients, I am also grateful for all of the traffic jams, DMV lines, bills, frustrations, slow grocery check-outs, missed deadlines… basically, my day-to-day life, too!

I have no idea what is coming up next. As an ‘elderly’ radiation therapy patient, I expect more side-effects of the original head/neck radiation than anticipate adenoid cystic carcinoma returning. When I have new pain, I don't leap to "mets have arrived", or I would be one very crazed Cheeky Librarian! (Ok, to be honest: more than I currently am.)

If you found this message thanks to Twitter, I hope it was worth the trip, and brightens your day. Please share it with all healthcare professionals and students you may know. If you are someone like me that wears adenoid cystic carcinoma, you can search Twitter for more news on this rare cancer using #adenoidcystic and #adenoidcysticcarcinoma. 

Here’s to all adenoid cystic carcinoma wearers enjoying more lifetime milestones together, thanks both to our personal grit, and to the healthcare professionals and students dedicated to the science and research that makes our shared world a better place.

Thursday, June 22, 2017

Adenoid cystic carcinoma: latest scan dancing

Scan dancing. Definition: the periods of time that a chronic cancer wearer undergoes scans and tests
to see if a)cancer has returned, or b)is there a new cancer lurking, or c)neither a nor b, just the new normal.
I had experienced increased pain in my left jaw this spring. Saying 'increased' is relative - pain in its various levels has been my companion since the 2006 radiation treatment. It is an acceptable trade-off and one that I knew about might happen when I agreed to radiation treatment to begin with. One morning in May, though, it was a whole different kind of pain, with the added fun of additional paralysis to my mouth. I had been told way back in 2006 to watch for increased pain and paralysis, as it might be a sign of osteoradionecrosis (ORN), meaning the jaw was dying due to the radiation it received way back then. I hustled in to the Head & Neck oncologist, who looked me over and sent me to a dental oncologist (did not know that was a specialty) for a look-see. The dental oncologist looked me over, said that ORN was not taking place, and agreed that I was not going to be their new project. I was nervous at the thought that I might be losing my jaw despite all the work I continue to do to keep it healthy (mainly keeping my teeth healthy so nothing needs worked on or pulled out). [Please note below what my plans would have been if I did have to have my jaw removed. Hope it brings a smile. -th] I returned to my head/neck oncologist, who ordered an MRI (already due for one in August, just made it a couple of months early). MRI didn't locate any critters, looked about the same as the one I had back in 2015. So the increased pain level is pretty much my new normal. Luckily, the paralysis has subsided, only a little residual drooping compared to what I was experiencing before). I try to not take too many NSAIDs by sidetracking my focus: look at pretty pictures, watch comedy, visit with my loved ones by phone and in person... lots of ways to get my mind off the pain. Work is really great now, with the library kicking into high gear to support the medical center's mission. I am grateful to have a job where I can add value to others' lives, even if it is small in the wide scheme of things. 

Visited my great dentist and her team today, and had more reassurance that all my choppers are doing fine. All of my healthcare team and I have agreed that I can watch the pain for another couple of months, and if it is still as big a deal as it is now, additional exploration can be considered then. For now, I am cruising and very glad I am not an oncologist's current project. 


Note: If I ever do have to have my jaw removed: the usual treatment is to take out the jaw bone and replace it with another bone, maybe a section of rib or one of the unimportant leg bones. That is way too ordinary for me. I would like to have a 3d printed jaw that I would wear on the outside of my skin like a member of the Borg. I want it to be studded with rhinestones and flashy as all get-out. Ideally, I would have one printed up for each holiday and season, and change them out like jewelry. 

Monday, February 27, 2017

Rare Disease Day 2017 - and this rare disease wearer is very grateful to NORD

The National Organization of Rare Disorders (NORD) is holding its annual Rare Disease Day tomorrow, Feb. 28. According to their definition of "rare disease", it is "any disease, disorder, illness, or condition affecting fewer than 200,000 in the United States..." NORD keeps track of and shares information on over 7000 diseases and disorders, and is working to increase awareness about rare disorders, particularly how those of us handle life while wearing a rare disease (before and after diagnosis and treatment). This year's theme is Research, a topic near and dear to my heart, since I am only casting a shadow today because I was diagnosed & treated (and still experience annual checkups) by my research-focused heroes at Nebraska Medicine and University of Nebraska Medical Center.

I checked to see if I could locate statistics on the incidence of Adenoid Cystic Carcinoma.

  • I found this 2012 article that just might include my own 2016 diagnosis statistic: Adenoid Cystic Carcinoma of the Head and Neck: incidence and survival trends based on 1973-2007 surveillance, epidemiology, and end results data. (Note - table figures were corrected in this Erratum, published later in 2012-please check this out for correct figures.) Yep, ACC fits the rare disorder category - they picked out 3026 patients diagnosed with ACC in the head/neck in that 34 year span. The article has been cited 18 times by articles in PubMed Central, and around 97 times as recorded by Google Scholar - take a look if you want to check out more recent research on ACC. Remember - always discuss with your healthcare provider if you find anything in research articles that might apply to your own condition.
  • I found figures on a site maintained by the American Society of Clinical Oncology - Cancer.Net: 1200 people per year diagnosed. Sources for facts are listed as: Oral Cancer Foundation, and the Adenoid Cystic Carcinoma Research Foundation. 
  • According to Adenoid Cystic Carcinoma Organization International (ACCOI), who based their statistics on SEER data, ACC is diagnosed in 1224 of all people diagnosed with cancer in the US each year. They also show Australian figures for 2006-2010, showing an average of 81 ACC cases reported per year. (I am not a biostatistician, so I may have misinterpreted that table.)

If you have been diagnosed with Adenoid Cystic Carcinoma, there are communities on the Internet that exist to help you lessen your isolation. I have linked to some on the right side of my blog, and you can message me to ask me about other sources. You can also find a local library that offers consumer health information services, and get immediate access to quality, evaluated information that you can take to your healthcare provider for interpretation.

Cheering for all of us rare disorder-wearers, and thankful for NORD to keep the awareness level up. Especially cheering all ACC wearers, no matter where it was first diagnosed. I am heading for the 11 year marker since initial diagnosis, and planning to celebrate many more survival anniversaries.


Wednesday, June 29, 2016

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?

Sunday, June 05, 2016

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.

Monday, March 28, 2016

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.

Thursday, March 17, 2016

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. 










Sunday, February 14, 2016

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. 




Tuesday, January 19, 2016

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.




Tuesday, October 20, 2015

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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Tuesday, June 30, 2015

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.

Sunday, June 21, 2015

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!

Sunday, April 05, 2015

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. 

Sunday, March 22, 2015

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.

Wednesday, December 31, 2014

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.


Monday, September 15, 2014

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.

Sunday, September 07, 2014

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/

Sunday, June 29, 2014

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. 

Sunday, June 08, 2014

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.)


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. 
 
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