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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.

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