Bookmark and Share

Friday, January 28, 2011

Great - another stigma for head and neck cancer fighters

When I was diagnosed with a 'head and neck cancer', more people than I thought would have asked me if it was due to any history of smoking - "you must have smoked a lot sometime". Nope, never even lit a match to smoke. Alcohol? "I bet you used to drink, and that brought it on." Nope, pretty much not a drinker. "Well, why did you get it then?", they would ask. (You understand, these were not my friends, just people that ran into my life story as they passed by.) "Not a clue" was my response. Adenoid Cystic Carcinoma has neither been shown to be caused by environment nor by heredity - they are still hunting for the cause as well as a cure.
So, after living through that, guess what news came out with this week:
Rise in Some Head and Neck Cancers Tied to Oral Sex: Study
Can't wait for THOSE questions (or even better, those knowing looks!) to come forward from nosy humans. Please understand - the study is referring to cancers testing positive for HPV, that same virus that the Gardasil vaccine is supposed to ward off. They theorize that multiple sex partners leads to a higher chance of specific cancers.
Bring on the assumptions and the knowing looks. Maybe I will strengthen the stereotype of the sexy librarian, all by myself. I might even come up with some ready stories as comebacks - "Well, there was that one weekend of Steve and Fred in the treehouse...", then walk away, leaving the nosy ones just wondering more. Anyway, I must give the high-5 to one of the physicians interviewed in the article - Dr. Lydiatt is from my very own University of Nebraska Medical Center. (And a very great surgeon.)
People used to not disclose that they had cancer. News like this may make them keep it quiet again. Lung cancer can happen when a person doesn't smoke a bit. Head and neck cancer can happen out of the blue, for no reason at all. Please don't look at the human wearing the cancer tumor scar and immediately blame them or their lifestyle for bringing the disease upon them (or, as someone once said, "You have received cancer of the mouth due to your sins against god". Yeah, that was a good day.) And if you are a patient, please don't berate yourself for having done or thought something to "bring it on". You have the hardest job of all: healing - pay attention to today.

Wednesday, January 26, 2011

Adenoid Cystic Carcinoma in the news

From Portsmouth, NH - Samuel Hyun, a math teacher, passed away due to ACC on January 16. He was 34. More on his story can be read here: Teacher Inspired Students

Diagnostic Imaging has an article from a Penn State resident on ACC of the breast:
I am not sure if Diagnostic Imaging is a peer -reviewed site or not (more about the author who is also the blog owner? here ), but I do take issue with these sentences in the article: "ACC has an excellent prognosis with few reports of metastatic disease. It is a slow growing lesion with a low recurrence rate. Long term survival rates are high." (They cite this article for that  'fact': Leeming R, Jenkins M, Mendelsohn G. Adenoid cystic carcinoma of the breast.Archives of Surgery.1992; 127:233-235.) While I wish the author all the best in their educational career, I urgently request that they learn more about ACC before they become a fully trained physician. Please. Speaking as one that wears this disease (different site, of course, hence the name "cheeky"), I would like a better definition of what 'excellent prognosis with few reports of metastatic disease' means exactly to health care professionals. (Possibly the author meant to say "ACC of the breast"?) Because I personally know of way too many ACC humans dealing with 'metastatic disease' .

Wednesday, January 19, 2011

Good sources of health information

If you are newly diagnosed with a condition, or are searching for information on a condition you have had for a while, please remember that librarians are standing by to assist you. You can locate libraries nearby that are ready to help by going to this MedlinePlus directory site: Also, check with your hospital or clinic to see if they have a library attached to them that serves patients' needs (some only serve health professionals, so it pays to ask.)
When you contact the librarian, they will ask you questions to identify your information need. This doesn't mean that you have asked the wrong question, or that they are nosy. Librarians are trained to conduct a 'reference interview', which is designed to identify the right information to give to you in order to successfully answer your question.

Monday, January 17, 2011

20 years since Desert Storm hit

20 years ago this evening, I was at a military spouse meeting, supposedly ready to hear specifics about how the Army notified survivors that their military spouse had died or been captured, and discussions about survivors' benefits. As we sat in the meeting hall at Ft. Sill, OK, someone came in and said, "turn on CNN". Since most of us had small children that had said goodbye to their dads 3 months prior, we weren't a CNN-watching bunch at our homes, generally catching it being forced on us as we waited at the Army doctor's offices for our well-child checks or other sick kids' visits (those were our best chances to mingle, at the doctor's!) We turned it on in the meeting hall to see that Operation Desert Shield had ended, and Operation Desert Storm had begun. Number one daughter was just 5 months old - she wasn't quite 2 months old when her daddy drove away in the wee hours to meet the plane that would take him over to camp in a foxhole in the sands. Number one son was in the other room, playing with the older kids. The acting post commander stopped by the meeting hall - he knew what we were supposed to be talking about that evening, and offered his knowledge and wisdom to our gathered group, even though we knew through our protocol training not to ask him much. He took number one daughter from me and moved to the back of the meeting room, just holding her as she slept, looking at her face as news of the bombs flying half a world away filled the room. He was a career officer, had probably seen combat himself in the 60's, but the news of the day hit us all hard, and seeing a soldier get strength from a baby was something I will never forget. Someone finally had the heart or sense or both to turn off the tv. We agreed that the topic at hand could be tabled for the next monthly meeting, and we gathered our kids and made our ways home to our dark houses, fighting thoughts of what the day's activities might bring to our small lives as we did the regular bed time stories, night time baths, and listened to prayers for daddies that were "working" away from home.
At the Armed Forced Day Parade
in Lawton, Ok, 1991. Daddy's home!
I write about this one 20-year-ago night in the hopes that I will be writing about what transpired in June 2006 in the year 2026. I see the strong young people that dear husband returned to help grow just a few short months after that January night, and I am grateful every day that we are together, after the endless minutes and hours where I had to face the reality that my kids might not even get to know their great father.  In another 15 years, anything can happen - here's hoping we are all around to see it together.
The two of them together today. 
(And as a nod to my swiss cheese memory - if I wrote about the start of Operation Desert Storm before on this blog, accept my apologies - today's announcement of it being the 20th anniversary just brought it back to mind again. Hopefully, I tell the same story each time - catch me if I don't!)

Tuesday, January 11, 2011

Adenoid Cystic Carcinoma in the news

Here is a research article (free to read, open access) from China, as published in the Journal of Translational Medicine: Inhibiting adenoid cystic carcinoma cells growth and metastasis by blocking the expression of ADAM 10 using RNA interference. The article says that research concluded that ADAM 10 is "potentially an important therapeutic target for the prevention of tumor metastases" in ACC.
I am glad they are doing this in vitro research (conducted on cells provided by the Peking University School of Stomatology), and greatly respect all scientists' efforts to reach a solution. The stepping stones research like this builds may someday lead to different treatments for our type of cancer.

But speaking as a child of the 60's and 70's - I really wish the protein they were looking for was
ADAM 12.

I haven't found many news stories about ACC in the past few months. If you see one, please send it to me at

Update on handling the cold weather after head/neck radiation and a skullectomy

(Swiss cheese memory precludes my use of the correct term for the removal of skull bone that I experienced back in 2007.) Based on previous years' experience in dealing with the cold weather (really hurts the radiated area, as well as causes headaches around the skullectomy site), and needing to avoid taking the acetomeniphen/ibuprofen alternating doses through day after day during the winter (the kidneys and liver are both crying "uncle"), I have been trying other things. Naturally, I wrap up with whatever warm, soft, non-scratchy items whenever I am heading outside. Dear husband suggested that maybe the "warm" theory was one to follow inside as well, and came home with a soft knit hat for me to try. It worked! My theory on why the hats work inside: when they removed that silver-dollar spot on the left side of my head in 2007, the surgeon replaced the bone with a mesh plate, then covered the plate with a 'spare' (?!) muscle from my jaw. What happens when you get out in the cold weather - your head tenses up, right? (Ok, mine does) That tension hitting the rearranged muscle set me up for extreme headaches every year from about October to May, even inside. So now, I have been running around at work, wearing hats like a Little Rascals character, again living the good life drug free. Warm head = no or small headaches. This has kept me out of the MRI/CT machines (go and say "headache" when you have had a lesion or two in your head already, you are gonna get scanned!), and improved my outlook on life daily. Since I have heard that wigs are warm to wear, I may be looking into that option, just to shake up the fashion. I have a clown wig at home, a big rainbow colored thing....
The proper term for what I had done, where the skull was removed and not replaced, is craniectomy. I did not have brain surgery - they didn't have to go in after anything - but craniectomy and other aspects of brain surgery can be found on this MedlinePlus site about Brain Surgery:
Who links to my website?