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Tuesday, December 31, 2013

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.

Thursday, December 12, 2013

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):
Other pages that are supporting Alicia: , her own page , and the website that her family has managed (along with raising thousands of dollars for research on this rare cancer)

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.

Saturday, November 30, 2013

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 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. 

Thursday, October 31, 2013

Update on fellow ACC wearer Shane Leonard

I wrote about Mr. Leonard's story back in 2012 . 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
Up for the task
I located his LinkedIn page, which took me to his Twitter feed . 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: . 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: .

Saturday, October 26, 2013

Adenoid Cystic Carcinoma in the news

Winter's nearly here
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: . 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): . 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 (, 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) . You can register for the upcoming Wannabe Cancer-Free 5k at this site: Congratulations on winning in so many ways, Mr. Babao!! And thanks for raising money to research this stuff that we wear daily.

Sunday, October 20, 2013

Grey Matters conference thoughts

Fall day
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.

Sunday, October 13, 2013

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 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 . (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

Monday, September 30, 2013

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"!

Sunday, September 08, 2013

Adenoid Cystic Carcinoma in the news

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: The gofundme site of the Jaime Ward Nichols Support Group has raised over $8500 towards their $9000 goal: . 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 . The online shop is located on Etsy: . 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
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.

Monday, August 26, 2013

Thoughts after a regular MRI of the head/neck

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.

Thursday, August 08, 2013

Treatment side effects for Adenoid Cystic Carcinoma:Trismus

origami virus
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:

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. 

Saturday, August 03, 2013

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

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. 

Sunday, July 28, 2013

Adenoid Cystic Carcinoma in the news

Sycamore HDR
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, 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:

(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: (that page shows the 2012 information - I located the 2013 information on a Facebook page here

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."

Friday, July 19, 2013

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:

I know I have mentioned sources of money for individuals before (most recently this month: ).

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: . 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 , but I would hope that we don't have to wish for cancer treatment money.

Thursday, July 18, 2013

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.

Sunday, July 14, 2013

Adenoid Cystic Carcinoma in the news

I saw news about this great fund-raiser for a fellow ACC wearer in New Zealand:
Funds set to assist cancer patient
-Janet Brill's optometrist clinic and their clients raised $3546.30NZD ($2768.10 USD) to help Ms. Brill cover ACC treatment. I bet she was surprised! Sending you best wishes, Ms. Brill, and happy that you have such great support! More about Ms. Brill, her experience with ACC, and information leading up to the fundraiser in this earlier story: Mates go the whole hog to lend a hand

Saw a post on Facebook about Matthew Bunszel, a rider/fundraiser in the upcoming Pan Mass Challenge (PMC) for the Dana Farber Cancer Institute on August 3-4. This might be classified as a 'bike ride', but at 192 miles, I am pretty sure it is an endurance trek! If you can see this Facebook post on Matt Adamson's site:  , Mr. Bunszel writes about riding for the memory of his mother, and for a friend that has inoperable ACC and is currently in treatment. Here is his fundraiser page, in case you want to add to his $10,000 personal goal:

Another fundraiser coming up: 5th annual Kellie's Krew Run for the Cure, on August 24, 2013: . Funny - the website doesn't give clear indication about where the run actually takes place, but I saw on a Facebook post that it will be in Dunn, NC. Congratulations for hosting this event for another year, and for gaining such a great collection of sponsors!

Research article published on July 13th in the journal Histopathology:
Adenoid cystic carcinoma of the salivary gland: A clinicopathologic study of 49 cases and of Metallothionein expression with regards to tumour behaviour;jsessionid=475788AF4A3A3C5D8E1EEC297243311F.d02t04. It covers cases that occurred between 1997-2004 in medical files in a medical facility in Brazil, and the authors studied the tumors resulting from these cases to see if they contained Metallothionein. If you want to get the full-text of this article, please check with your local medical library or public library. I will include the PubMed record link if it gets included in that database (yep, we are faster than PubMed, this time!)

Commentary article published July 1 in The Journal of Cinical Investigation:
Mutation signature of adenoid cystic carcinoma: evidence for transcriptional and epigenetic reprogramming
Here is the PubMed citation:
(and if I posted this before, thank you for indulging me.)

Wednesday, July 10, 2013

Check out Nebraska - videos by air

I saw this video project today, supported through our educational television and others. Sharing this so you can see a bit of my adopted state that I love so much!

Posted here as a respite for all of us heavy with thoughts of cancer. Sometimes, you just have to fly!

Sunday, July 07, 2013

If you or a loved one is newly diagnosed with adenoid cystic carcinoma...

May 2006, in western Nebraska

I am glad that you found this blog, but so 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, since you need to concentrate on getting healed up and staying strong. Listen closely to your 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:

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, and saved me from dwelling on individuals' stories, enabling me to concentrate on my own path without distraction. 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. 

Adenoid Cystic Carcinoma fundraisers

View out of a Log Cabin
 window in
 Toadstool Geologic Park,
Speaking of fundraising - I have located a few, and will post more if you send them to me. Glad to get coverage to either research this rare critter of a disease, or to assist others with paying for their personal medical treatment.

A recent Facebook site that has rocketed to nearly 300 likes in a very short time: One Team, One Fight . You don't have to have Facebook to see the site, I think - should be an open one, but if you are on Facebook, consider 'liking' the page to catch updates as they happen. From the site: "This page is setup to keep friends and family updated on Jeff Dameron's progress and fundraising events in the community." I received permission to mention this site from Jeff's sister, the site's creator and a key member of Jeff's great support team, who added, "The more people praying and sending up good thoughts, the better." Sending you all good things through the interwebs, Jeff, as you progress along a path many of us have shared.

Dingleballs - not sure what that entails, but it looks like a lot of fun and it is the key for a fundraiser coming up next weekend in Fall River, Wi in memory of Erin Melin: This will be the last fundraiser, so don't miss it! Erin Melin died in January 2006 of ACC. Her wonderful supporters have held this fundraiser since, and donated the proceeds to charities supporting other ACC fighters/patients/wearers. This ACC wearer thanks them for all their hard work, and can't wait to hear how the fundraiser went out with a bang!

An individual fundraiser that I missed looks to be still taking donations through PayPal. I am mentioning this here, since the person is one of my personal heroes on this ACC trek that I find myself on: Alicia Almanza . Alicia has been a great supporter of raising money for ACC research over the years, so it is only right that her supporters include fundraising for her as her bills have increased. Take a look at "Leedy's Story" to see how one individual has faced this "indolent" cancer over the decades. Thank you for sharing your story, Alicia. I hope the event in May was everything you and your supporters hoped for, and thank you for all you have done to further research on our cancer.

The Adenoid Cystic Carcinoma Research Foundation (ACCRF) has a site where you can set up a fundraiser to support ACC research: Remember that this entire foundation was created by an ACC fighter/patient/wearer and her wonderful husband - never overlook the power of an individual, folks! I think setting up a fundraising page would be a wonderful thing to hold in addition to a birthday. I am also considering this for my own memorial (yep, sorry to say, but none of us live forever) - what a wonderful tribute, and better than flowers!

Let me know if you hear of other Adenoid Cystic Carcinoma fundraisers, either personal or to support research. I would be honored to promote them here.

Saturday, July 06, 2013

In case you are considering a fundraiser to help pay for cancer treatment

I was fortunate to be able to tell my friends to NOT hold a fundraiser for me in 2006 or 2007.  My colleagues at work all pitched in and gave me an iPod instead, which still keeps me company on the road and around the house, and a cash gift I received was put towards the purchase of my Gypsy bicycle. It took me about 4 years, but I finally paid off all my co-pay costs (including those that occurred in my follow-up visits - those MRIs and CT scans really rack up the charges!) 

I know of many fundraisers to fight Adenoid Cystic Carcinoma and other cancers, though, some of which have been mentioned on this blog (and will continue to be). If you are considering holding a fundraiser or enlisting the crowd to help pay for your or your loved-one's/friend's medical bills, here are some sites that might come in handy.

You Caring - from the site: "In just 3 steps, easily create your own site to raise money online for personal causes & life events. No fees, easy & secure. YouCaring is a free fundraising website created for individuals wanting to raise funds for medical expenses, memorials and funerals, education and tuition assistance, adoption fundraising, funding for mission trips, pet expenses or animal rescue and helping another in need. It provides a simple and organized way to implement your fundraiser ideas and help achieve, or exceed your fundraising goals."

Give Forward - from the site: "GiveForward's online fundraising pages empower friends and family to send love and financial support to patients navigating a medical crisis. Start a GiveForward page today to ease the burden of your loved one's out-of-pocket medical bills."

These and other sites are also discussed in this Fox Business post: . 

You may wish to consider seeking out financial assistance before requesting donations at the beginning of care. Here is a page of suggested links at the Oral Cancer Foundation: . 

Don't forget to enlist the assistance of a CPA to help figure out what bills you have incurred that might be deductible from your taxes. Here is the page from the U.S. IRS on what is and isn't currently considered a medical expense deduction: Personally, I figure hiring a CPA to handle my taxes is just another professional on my team involved in my after-cancer life. 

My reason for not wanting a fundraiser is because of a conversation I had a couple of decades ago with the mom of a wonderful boy that was born with a rare skin condition. The small community had pulled together and held many fundraisers to help with the huge medical expenses the family faced after his birth and during his early months, that stretched into years. When I met the family, he was 10 years old and doing wonderfully, though still hoping for a cure. His mom said that sometimes she wished she had not taken the donations.  She would hear unkind, snide comments about new vehicles that the family had purchased to replace ones that had worn out, or about the new house they had built, or even a new winter coat she had bought herself (first one in years), all assuming that the money was being squandered instead of going to her son's medical care (when in reality, the money had been spent years ago - the bills were that high). Because of how some of the community members viewed her purchases, even 10 years after the initial fundraisers, the family refused any further fundraisers in their son's name. 

Located another ACC blogger

Just found a fellow ACC traveler's blog, thanks to her wonderful husband's blog:
Glimpses Within . Karen Zanker was diagnosed with ACC just this past October. Her husband, Steve, had a post today on his (aptly named) blog that gives an update on how things are going: Views From The Passenger Seat

Reading their story brings back to mind the conversation I had with the nurse taking me downstairs the first time I left the hospital, after a 24 hour stay for my initial surgery and before we got the diagnosis the next week. She and I were alone in the elevator and I could only think of getting the heck out of there and home to heal up. She was standing behind me, holding the wheelchair handles, and I was watching the floor lights blip by. In an offhand fashion, she asked me if the man that had made sure I walked the hallway and ate my oatmeal before discharge that morning was my husband. Being a daughter of a nurse, I knew they make no offhand remarks, but quietly said he was. "Good", she said. "You have a great source of support." And then the elevator door opened.

As a total stranger that has a micro-knowledge of Steve and Karen's story, I want to thank Steve for being Karen's great source of support. I know they have other lifelines that they are thankful for, but believe me, that person you can count on, in whatever form they take (sibling, parent, friend, child, relative, fellow human, fellow mammal of some sort, or even a Wilson), is so very valuable when you face any crisis, cancer included.

Sending Karen and Steve all best wishes as they head into the new normal. And someone please buy some of Karen's cookies and eat them for me, ok?

Wednesday, July 03, 2013

International conference this month, sponsored by ACCRF

There is an upcoming international conference to gather researchers studying the MYB protein, according to this news item from the University of New Mexico:

International Conference to Take a Fresh Look at a Cancer-causing Protein

From the announcement: We think that the MYB pro­tein is impor­tant in a vari­ety of human can­cers,” said Ness. “Ade­noid cys­tic car­ci­noma is a rel­a­tively rare tumor, but in that case we know that MYB is directly affected.” So the con­fer­ence will fos­ter new joint research efforts between peo­ple around the world who study this pro­tein by bring­ing them together to talk about their work. “We want to encour­age new kinds of col­lab­o­ra­tions and strate­gies for design­ing ways to tar­get MYB and to treat these kinds of tumors.”

Wonderful things come out of collaborations begun at just such a conference. This gathering may lead to additional breakthroughs in the years ahead.

You can see the list of invited speakers and register to attend the conference here:

The conference is sponsored by AACRF, and the University of New Mexico Cancer Center.

Wednesday, June 26, 2013

Cancer - diet and nutrition

I am gathering evidence-based information that is available on how (or if) cancer can be influenced through diet and nutrition. First site I want to share is from the National Cancer Institute:

Fact Sheets: Diet and Nutrition

This is a list of fact sheets that summarize the results of studies dealing with nutrition or diet and cancer.

More to come on this and tangental topics surrounding the food we take in and cancer (both pre- and post-diagnosis). If you know of a good resource on diet/nutrition and cancer, please let me know about it in the comments.

Sunday, June 23, 2013

7 year anniversary since original surgery and diagnosis

Open Road II 
Yep, 7 whole years. And they have been pretty good ones, if I say so myself. There are some things I haven't been able to change (still the fattest person I know that has ACC-what's up with that?), some things I did (began side jewelry business, refocused on what is important to me), and some things aren't that different (still like taking photos and traveling for fun and library outreach). Just very glad I am still casting a shadow, and able to interact with all the great people I knew before and have gotten to know since. Here's to more miles of traveling the ACC road together.

Monday, June 17, 2013

Adenoid Cystic Carcinoma patient is seeking information on clinical trials

I happened across this during a search for ACC on the web:
Technology wanted: Seeking clinical trials for treatments of Adenoid Cystic Carcinoma
-a Canadian is offering $2500 for accepted lead

I haven't thought of seeking clinical trials this way - I would have gone to a medical library (the ones in Canada are wonderful!) and asked them to search for me. Getting a crowdsourced-search going isn't a bad thing, though, which is why I am mentioning it on this blog. The IdeaConnection post goes on to say:

NOTE: The client is already aware of the trials being performed by Snjezana Zaja-Milatovic at the University of Virginia, and the Axitinib trial being performed at the Memorial Sloan-Kettering Cancer Center. 

Cheeky Librarian again - A basic method of searching for clinical trials - If you go to the link on the right side of my blog and click on Search for ACC, you will find 96 trials that include the words adenoid cystic carcinoma. Click the box next to show only open studies, and you will see 22 studies listed. Take that list to your care team, and see if you are a candidate for any of them. 

Another site, CenterWatch, has a page for Head and Neck Cancer - I will add that link to the resource listing on the right side of this blog: 

Wishing the best for the person seeking the information. And if you know of another clinical trial, please sign up at that IdeaConnection site, and maybe your lead will get you the $2500. 

Added information - NIH has a free volunteer registry you may want to sign up for, called ResearchMatch. You can sign up through a link towards the bottom of this NIH page: . It appears to be limited to the United States, but worth checking out. 

I located this Canadian site for clinical trials: , but they say they aren't affiliated with Health Canada. So I went to Health Canada, and located this site for their clinical trials lists: . I will add the second site to the research links collection on the right side of this blog.

Wednesday, June 12, 2013

Happened to see this call for freelancers to find top clinics in Canada that treat Adenoid Cystic Carcinoma

Saw this project call asking for bids from freelancers:

Wondering what sort of flame war I would start if I posted myself to do the project for free? (I figure my qualifications as a medical librarian AND having the cancer should move me to the top of the heap - plus the whole "free" thing.) This is the exactly the type of question you should be able to contact your local medical library with in order to find out the answer.

The librarians would ask you questions like:
-what do you consider qualities of a top clinic? (the person may be interested in number treated, or amount of research published by clinic teams, etc.)
-what would you like included in the list? (contact information, websites, recent and completed clinical trials, etc.)
-are you limiting clinics that reside within Canadian borders, or do you wish to include those clinics outside Canada that are sponsored/connected to Canadian research teams?

I love that the top bid is over $1200 for work completed within 3 days. I need to share that figure with our Head of Reference so we can do some ROI figuring of our own for the searches we complete daily for our health care teams and consumers.

Please let me know if you have ever successfully bid on and were paid for work completed with this site. It may offer us working through cancer another avenue for a bit of cash to cover health care bills. I would want to know someone that had actually received money for work completed before even suggesting it as a source of extra pay, though.

Thursday, June 06, 2013

Sending Happy Birthday wishes for everyone

My Scion Xb, shining in the Kansas sun
When I lived in Germany, we had two birthdays - one for the day we were actually born, and one on our "name day". I figure that anyone that has had a cancer diagnosis has probably either limited number of remaining birthdays, or (more probably) realizes a bit stronger than regular folks the importance of marking birthdays. I have marked anniversaries of the cancer trek, but refuse to call any of those dates a celebration (even the last day of my radiation was not one to celebrate, just to be endured.) So, on this day, one that I know at least 3 people are celebrating as their birth-day, I join Jay Lake's wish of making this his birthday to all of us, and propose that anyone (walking the cancer path or not) should have it as their second birthday. Party it up, everyone! Or just smile in the knowledge that we are casting shadows together for one more glorious day.

Saturday, May 25, 2013

Adenoid Cystic Carcinoma genome has been sequenced!!

Yes, I am pretty darn excited at this news!!

Memorial Sloan-Kettering Cancer Center has announced: 

Investigators Sequence the Genome of a Rare Head and Neck Cancer

Their article about this was also just published - here is the PubMed link:
The mutational landscape of adenoid cystic carcinoma
(Remember, you can request a copy of the full-text of the article through your local public or medical library. Delivery fees may apply. Or, you can click on the publisher's link on the PubMed record and pay a higher price for full-text with a credit card. Since this study had NIH funding, the article will most likely be free to the public after a bit of time-say 6 to 12 months- has gone by.) 

Best sentence of their abstract comes at the end: "Collectively, our observations establish a molecular foundation for understanding and exploring new treatments for ACC."

In case you wonder if those donations you have been collecting or giving make a difference - here is the list of all the funding agencies behind this monumental research effort (so please, keep on giving and collecting!) (PS-links are mine, so you can get to see more about who is behind the research, and in the case of the ACCRF, get right to the donation page, so we can raise this work to the next level!):

This research was funded by the National Institutes of Health under grants RO1CA154767, R21DE023229, and 5T32CA009685; the Geoffrey Beene Foundation; the STARR Cancer Consortium; the Louis Gerstner Foundation; the American Head and Neck Society/American Academy of Otolaryngology — Head and Neck Surgery Foundation; the Howard Hughes Medical Institute Medical Research Fellows Program; and the Adenoid Cystic Carcinoma Research Foundation.

Update (5/29/13) NIDCR also had an announcement on this:

Saturday, May 18, 2013

I saw a YouTube video about an Adenoid Cystic Carcinoma wearer curing their cancer through macrobiotic diet

First, so very glad to hear another ACC wearer has had a baby after treatment, and isn't he such a cutie! Also glad that mom is doing well, cheering very loudly for that! Her choice of not doing radiation is an option everyone has - I chose to do the radiation in 2006 based on my age and relative health. If I had been older, probably wouldn't have chosen it, either.

Second, glad to hear that the macrobiotic diet is keeping her life healthy-I have heard that type of diet (after they expanded from just brown rice and water, back in the old days) was one to follow if one wants to be vegetarian. 

Third, I could just as easily say that me eating chocolate pudding 'cured' my cancer, as I have been "no evident disease' (the official term) since 2007. Am I cured? Doubt it - ACC doesn't leave that easy - that isn't its style.  Nothing I can do at this time to keep it away, either - no matter how much tumeric or juice well-meaning people have told me to eat, nor midnight animal slaughters, nor negative vs. positive thinking, nor yearly scans. The company's logic doesn't make sense when they imply that following the macrobiotic diet is what has kept cancer from returning. No way of knowing that. Just saying. 

However, there are ample opportunities to conduct clinical trials to prove alternate therapies work to cure cancer.  A 2012 meta-analysis of the medical literature conducted to search for research on German cancer diets (published in German, but an English abstract is in this PubMed link: ) concluded -

"The most often mentioned "cancer diets" are Budwig diet, Gerson's regimen, lowcarb dietcancer cure of Breuß and macrobiotic diet. These diets can be classified according to the principle idea of carcinogenesis as follows: cancer as a lack or abundance of a substance or as a consequence of pathological metabolism of cancer cells. Staying in line with a specific diet the patients are thought to be able to cure themselves or at least substantially contribute to cure. However, we did not find any scientific publication of a clinical study which describes positive results regarding survival. On the contrary, data show malnutrition and side effects."

That is great news for companies such as Cancer Compass-An Alternate Route (the author of the blog is unnamed; I couldn't find out who the individual is, even when visiting the About page: ), or Denny Waxman, the macrobiotic counselor featured in the films (, as proponents of alternative and complementary therapies have a wide-open field to run actual trials to test out these therapies against traditional treatments, and see how things shake out. Run the study, and alert the world with the findings! I would sign up for a macrobiotic study, and I bet there are other ACC patients that would be interested, too. Checking today (5/18/13), I only located one study that had the keyword 'macrobiotic' in it when I searched the Clinical Trials database (, completed in 2006 - no results published (personal comment: aw c'mon guys, really? give us some results!). 

I know there is great interest on curing or preventing cancer through our own actions, through diet, exercise, moving to a safer neighborhood, changing jobs, whatever. Believe me, if I could point out something that brought on my own cancer, I would be telling EVERYONE how to avoid what I experienced and continue to experience. (And I wouldn't be making money on the news, either. Again, just saying.) 

After reading the comments on a recent story about an actress making a decision to adjust her chances of having a BRCA gene-related cancer, I know there is much more scientific work needed to address the discussion of alternate/complementary vs. traditional treatments. (By the way, I entered a comment on that story that said people can increase their own health information literacy by asking questions through their local library that serves consumer health information - let me know if that comment showed up.)

Finally, I sure hope they paid her (the ACC wearer in the films) well for showing up and telling her story, and I wish her years of happiness ahead. 

Saturday, May 11, 2013

Just learned of an Australian source of support for Adenoid Cystic Carcinoma

Found this group on Facebook - posting their Facebook page with permission:

You will need to ask to join - it is a closed group.

Sunday, May 05, 2013

Ever think cancer can be a blessing? Check out this blog.

I happened to locate a beautiful blog, For The Family, when searching the web for mentions of ACC.
Jenny A., the author, has written about 10 (so far) blessings of cancer that I wanted to share. Thank you for your writing, Jenny A.

About a funeral and family

Good advice from a potato chip box at the Hy-Vee
Just returned from visiting our hometown to attend a funeral of a close uncle. He and I talked freely about death and how we hoped to meet it and what we hoped people would do (and not do) to mark our deaths. His funeral was attended by people from all walks of life - he was that kind of man, one that everyone liked. I will miss him like crazy. He was a model of keeping family first - and I sure hope that I have followed his teaching.

While at my mom's home, I was able to visit with my brother and his wonderful family. He too keeps family first, and revels in doing things together. I am so proud of him, being the dad that his kids need (yes, even as young adults, having the advice and support of a dad is important!), and now a grandpa to a wonderful grandson. My mom is so cool - she told me that she is proud of both of us and how we have grown up. I just tell her it is all her fault, or due to her diligence, whichever way one wants to look at it (grin!). She worked so hard while we were growing up, but still found ways to spend time with us (more valuable time than what they call "quality time" now). I came back to my home and told my kids (young adults, both of them) that I was proud of them and how they have grown up - can't say it enough. My dear husband is and always has been such a great dad to them, even while deployed in the military, and then in person as a stay-at-home dad for 16 years (a braver man I have not met). He hears daily through my actions and words how wonderful he is as the leader of our family.

I am writing all of this down (in a somewhat coherent fashion, I hope) so that it will be recorded somewhere for my kids to see later. All of us will stop being around to tell others how special they are to us. Don't pass up the chance to kiss a cheek, lighten a day, cheer someone up. Like the potato chip box at Hy-Vee says, handle everyone you know and meet with tender loving care. We are all in this together, until we aren't.

Saturday, April 27, 2013

A doctor asks, "How would you react to a cancer diagnosis?"

A post by Dr. Suzanne Koven, on KevinMD blog:

Since I have a cancer that will probably give me multiple opportunities to have a reaction, I figure I will probably react differently each time. Maybe I will work up to an Oscar-worthy performance by the final time I get the news that cancer has come back again. Do I think about that, or polish up my delivery?-no frickin' way. Too busy doing other things, and wondering about the mysteries of life. I will be scanned this year (took last year off - a slow cancer doesn't deserve that much notice, in my not-so-humble opinion), so I guess I will have some of the usual build-up after the tests until I get the word from the doctor if I am good to go for another period of time.
As a former active Army wife (now just an in-active one), I figure the news is similar to when we would find out it is time for a move - expected in the abstract, and you know it is coming for years ahead, but causes quite a rush of emotion when spouse gets those actual official orders. Most of my life has been knowing that I do not have significant power over my future - my health status fits into that mold, no matter how many messages they put out about preventing cancer. I can choose some paths (work hard through college, have a career that I love, family life that is fulfilling...) I have lived a pretty boring life (as far as risky behavior goes), yet still have cancer. Go figure.
What I find interesting is when I have turned down other cancer scans - mammograms, colonoscopies, whatever (I still get checkups, though). The health providers look at me in a way that makes me wish I could see what notes they are recording in my health record. My point to them - even if cancer is located in another part, I am not sure I would take on the fight against it - I know what that fight looks like, have done it admirably (if I do say so myself), and figure I am not going looking for other types of tumors to throw money or time at. If something is found during the scans for my first cancer, then I will have a different kettle of fish to deal with at that time. I am glad I rode the treatment train I did - I figure I gave it my best shot at the time to gain years before cancer comes back. But I am not looking for another train at the station, believe me. Accuse me of hubris; of being short-sighted - let me know your comments, and I will post them gladly. I will defend your right to track and attack your cancer how ever you choose- just give me the same latitude.

Dr. Koven's blog address:
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