We said goodbye this spring to another ACC wearer, Pat Shannon: https://www.ridinon.org/pats-final-ride. I had become friends with Pat on Twitter during his cross-country motorcycle trip. I appreciate how he faced ACC on his terms and will keep his model close by as I move forward on my path. Pat did more than live a life - he inspired others to keep an adventurous spirit even when dealing with cancer limitations.
Friday, July 23, 2021
15 years on...
Saturday, November 07, 2020
Things are going pretty well
The weather is fantastic - in the 70's today, windows are open and the roast that I am cooking for tomorrow's dinner is making the house smell like a home. These days, eight months into the COVID-19 pandemic, there are no small positive moments. There could be major negative positives - various family members (including myself) have been tested for the virus, so far none are positive. Grandson is growing - we witness his progress nearly every day, thanks to FaceTime and AT&T. Still no hugs in person due to where we work at the hospital. Neither myself nor my wonderful husband could live with ourselves if we caused that little guy or his parents any illness.
The rate of infection and healthcare utilization are ramping up significantly in our community. I wish I could offer some respite to the great healthcare professionals who care every day for the new and existing COVID-19 patients. All I can do is stay home, mask up if I go out, and keep my visits outside of my house to a minimum. I fear that the celebration around Biden being named the next president will be super spreader events - people just don't learn.
NASA must know that I want to travel - they offered me a boarding pass :-). Reminds me of my Pluto trip: https://cheekylibrarian.blogspot.com/2015/03/do-you-remember-that-pluto-time-capsule.html. It would be so cool to fly around the Earth in the space station! Maybe my grandson's generation will have regular space visits as an option.Be safe out there, and stay well. We need you.
Sunday, July 05, 2020
5th of July

Today is another 5th of July. Dang it, I am holding hope again, this time that my relatives, neighbors and friends won't be experiencing chronic illness or dying because of COVID-19.
It has been 14 years since my diagnosis and treatment for adenoid cystic carcinoma. If I had known all those years ago that I would survive my cancer treatment to face a global pandemic in 2020, I still would have fought hard to recover. There are still hopeful moments this year while the pandemic rages on in the world. Viewing things with a glass-half-full perspective: we are expecting to welcome our first grandchild in a few weeks; I am able to visit by phone with my fri3ends & senior relatives, and cancer has not returned. I had a right going-over during the Fall of 2019 due to symptoms that were attributed to aging instead of ACC mets. I am once again a boring patient while my healthcare professional caregivers are fighting another battle to return others to health.
Wednesday, August 28, 2019
Adenoid Cystic Carcinoma in the news
Brave Like Gabe Running and Bike Trail has been named in Perham, MN. Named in memory of great athlete Gabe Grunewald, who died of Adenoid Cystic Carcinoma earlier this summer. I miss Gabe's strength and model example of how to continue living with this rare cancer, and wish her family and friends peace.
Drug development news: HLB's subsidiary LSK Biopharma has been awarded permssion for Phase 2 of rivoceranib. The trial isn't yet listed on the ClinicalTrials.gov site when searching for Adenoid Cystic Carcinoma trials - stay tuned.
Wired article on carbon ion therapy experienced by an Adenoid Cystic Carcinoma patient, which promises to be even more effective than proton radiation therapy. There are two trials listed as recruiting on the ClinicalTrials.gov site.
Search for latest #adenoidcysticcarcinoma on Twitter.
Sunday, July 28, 2019
Checking in, marking 13 years wearing Adenoid Cystic Carcinoma
Saturday, November 03, 2018
Just an adenoid cystic carcinoma wearer sharing happiness with the world
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L-R: 2nd place winner & wedding officiant, groom, & bride in Mountain Home, Idaho |
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Reception in Lincoln, Nebraska |
Thursday, June 22, 2017
Adenoid cystic carcinoma: latest scan dancing

Monday, February 27, 2017
Rare Disease Day 2017 - and this rare disease wearer is very grateful to NORD
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 |
Sunday, June 05, 2016
Today is the 29th National Cancer Survivors Day...

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

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

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
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 .
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?
Tuesday, October 20, 2015
Calling fellow ACC wearers - here is an opportunity to be included in a film!
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 -
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.
Questions can be addressed at angelaroembke@gmail.com
• conference presentations
• educational presentations or courses
• informational presentations
• on-line educational courses
• educational videos
Date________________
Date_____________
Tuesday, June 30, 2015
9 years post-diagnosis
Sunday, June 21, 2015
Another lap nearly completed
Life post-diagnosis can still be a mixed up bowl of cherries! |
Sunday, April 05, 2015
If you or a loved one is newly diagnosed with Adenoid Cystic Carcinoma...
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Workmen looking at a car-sized hole that appeared in a Sears parking lot |
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?
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.