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
By uploading your photos here and clicking post, you are releasing rights of your photos for educational purpose of Adenoid Cystic Carcinoma.

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I hereby grant permission to the rights of my image, likeness and sound of my voice as recorded on audio or video tape without payment or any other consideration. I understand that my image may be edited, copied, exhibited, published or distributed and waive the right to inspect or approve the finished product wherein my likeness appears. Additionally, I waive any right to royalties or other compensation arising or related to the use of my image or recording. I also understand that this material may be used in diverse educational settings within an unrestricted geographic area.
Photographic, audio or video recordings may be used for the following purposes:
• conference presentations
• educational presentations or courses
• informational presentations
• on-line educational courses
• educational videos
By signing this release I understand this permission signifies that photographic or video recordings of me may be electronically displayed via the Internet or in the public educational setting.
I will be consulted about the use of the photographs or video recording for any purpose other than those listed above.
There is no time limit on the validity of this release nor is there any geographic limitation on where these materials may be distributed.
This release applies to photographic, audio or video recordings collected as part of the sessions listed on this document only.
By signing this form I acknowledge that I have completely read and fully understand the above release and agree to be bound thereby. I hereby release any and all claims against any person or organization utilizing this material for educational purposes.
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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.

 
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