Friday, December 28, 2007

Donating to the cause: Adenoid Cystic Carcinoma

At year's end, one's thoughts often turn to how one can give to those doing good in the world, with or without a tax deduction involved. I have listed some sites here that may be useful to you, or to those that ask you about where they should give money to support research on ACC. You can also give to the big cancer organizations, like the American Cancer Society, but they don't fund specific research on a rare cancer like ACC. (If someone from ACS wants to weigh in, please do - email me at teresa.hartman at gmail.com and set me straight). Oh, and I repeat what I said last year - I am listing these organizations and individuals only for information purposes - where I put my money is my own business.

Adenoid Cystic Carcinoma Research Foundation http://www.accrf.org/ - the director of this foundation is one of us, folks. Marnie Abbott Kaufmann was diagnosed with ACC in 2004. She not only went through surgical and radiation treatment, she and her husband formed this foundation to help fund research to someday stop this cancer in its tracks. In addition to accepting donations on their website, they also offer email registration for updates from the foundation.

Adenoid Cystic Carcinoma Organization International http://www.accoi.org/Donate.htm - this site offers great information, an email discussion group of fellow ACC survivors and their caregivers, and has helped fund research on ACC. They have an address for mailing in donations, as well as using PayPal.


Attack ACC http://www.attackacc.org/ created by family and friends of Alicia Almanza, a 16 year survivor of ACC. All the money raised will go to the University of Virginia Comprehensive Cancer Center, the only center that has dedicated itself to research on ACC.

Rare Cancer Alliance http://www.rare-cancer.org/ this is not a non-profit group, but rather is a single ACC survivor that created vital support networks for many of the rarest cancers, including ACC. Donations are used to support website maintenance and research funds, and can be made through PayPal. The site also links to other funding sites for research: http://survivor-support.rare-cancer.org/research-funds.html

Oral Cancer Foundation http://www.oralcancerfoundation.org/donations/ also a site for support discussion lists, this foundation has a General Fund that supports research, awareness, and early detection. They accept PayPal. They also link to the Bruce Paltrow Oral Cancer Fund, a fund co-directed by the OCF and the Paltrow family.

Start your own online foundation. Have you ever wanted to start your own foundation, but figured you needed to win the lottery to do it? According to the Independent Charities of America, you can do it with any amount of money. Before you start one , you should check with your favorite CPA, though, just to make sure you are following the tax rules in the state you live in.


Please let me know if you know of additional non-profit groups that support research on ACC, and I will collect the links here.

Thursday, December 27, 2007

Do you wish you could rate the doctors that care for your adenoid cystic carcinoma?

Doctor rating - most people wish for a fair system that consumers can get easy access to, in order to make better treatment choices. The New York Times recently had an op-ed piece, titled: Rating Your Doctor, Fairly http://www.nytimes.com/2007/12/08/opinion/08sat1.html

I took a quick look on the web to see if I could pull up any ratings on any of my doctors. I found a few sites, but as far as I can tell, nearly all required money to see the real ratings. The FAQ of RateMDs shows that it is a social networking site, relying on patients to report on their experiences with physicians, so it is the closest one to being 'free'. I know I use comments and ratings on Amazon when considering buying electrical kitchen appliances, but I am not sure I would put the same weight on someone's comments about the oncologist I need to treat my cancer... I would definitely take the comments into consideration, though. More about this site on a blog, complete with comments from readers on both sides of the rating debate: Notes from Dr. RW

Health Grades http://www.healthgrades.com
offers reviews on physicians, hospitals, and nursing homes. Reports are for a fee - the doctor I looked up had a review available for $29.95. I could also get a cost estimate report for oncology visits for a female, aged 45-64 in my zip code for another $7.95.

Another site, MDNationwide, charges $19.95 for licensure status, their experience with specific procedures/treatments, their ranking in their specialty field, past state & federal disciplinary actions, malpractice judgements, review* of their internship, residency, and fellowship training as well as the medical school they were graduated from and their complete contact information (*folks, all of those can be retrieved for free from a local medical library)... not sure where this site can get all of that info, but I am thinking that there are bad doctors out there that haven't been sued much. Maybe the social networking site WOULD offer more insight into how a doctor behaves at the bedside and in the office.

Tuesday, December 25, 2007

May you have a Geomag Christmas, too!

Santa brought me cool magnetic toys to add to my collection: Geomag http://www.geomagsa.com
And no, my titanium plate is not magnetic, but I won't tell you how I know that for sure. Merry Christmas, everyone!

Saturday, December 22, 2007

Happy Winter

Today is the first day of winter, and the 20th birthday of number one son. I have been thinking about all the things I am currently grateful for:
-my family, close and extended. I love to hear how everyone is doing, and visiting with them using or without the use of technology.
-my friends, without whom I would have been lost oh so long ago
-my home, warm and snug on this cold day.
-my colleagues and my career. Man, what WOULD I have been if not a librarian? The mind boggles...
-the health care professionals I work with and who have worked on me. I prize modern medicine. I have never been one to wish to live in the days of covered wagon. Based on my medical procedures over my lifetime, I wouldn't have survived to my current age if I had lived back then!
-the city, state, and country I live in. I have lived lots of places on both sides of the Atlantic, but this one seems to be the best fit for us. I look forward to working with the community to solve our problems and celebrate our successes together.
-finally, the present I received yesterday - a leather-bound 20 year Advanced Planner. Yep, I plan on wearing out every one of its pages!

Wednesday, December 19, 2007

Easing off from the thoughts of cancer's return

It has been over a month since my craniectomy, and a few weeks since the great news of a cancer-free biopsy, but I still have to work each day to get relaxed and enjoy the season. It is like I had some military Threatcon exercise, begun with the words "we found a suspicious lesion", and ended with "no cancer found, go home and continue healing". Not all troops in my head have yet heard the news that we went back from Threatcon Delta to Threatcon Alpha. I doubt if I ever get back to Threatcon Normal - that status was eliminated with the initial diagnosis of cancer last year.

Monday, December 17, 2007

From American Cancer Society: Cancer figures for 2007

Cancer Facts & Figures 2007 has been released, and it shows that I was joined in cancerland by an estimated 12,000,000 fellow earthlings this past year. Another estimated 7.6 million around the world died during the year from cancer. The news reports covering this story say that the rate of cancer diagnosis and deaths outlined in the report show a major increase, but you have to be careful every time you read statistics. The ACS includes this caution about the 2007 report:

"Caution: It is very important to note the information below. 1) Beginning with Cancer Facts & Figures 2007, estimated new cancer cases were computed using a new, more accurate method developed by researchers at the National Cancer Institute and the American Cancer Society. Improvements in the new model include use of data from a much larger percentage of the US population, allowance for geographical variation in cancer incidence, adjustment for delays in reporting, and the inclusion of many socio-demographic, medical facility, lifestyle, and cancer screening behavior variables. ...(please read the rest on the website)... The new approach will result in an increase of about 20% in age-adjusted annual incidence rates for all cancers combined and for the most common cancer sites. It will also somewhat affect racial and ethnic differences."

The weird thing is - even with tumor registries and methods available to count just about everything, including just about every hair on a person's head, that number of 12 million is an estimate, not a fixed number. Due to all the variances of reporting systems, this is the best estimate that can be achieved, and is one of many other statistics that will be quoted in many grant applications to support research in the coming months.

Thursday, December 13, 2007

Internet Broadcast video of surgery to remove Adenoid Cystic Carcinoma from hard palate

The National Library of Medicine has a live video of surgery to remove ACC from the hard palate and palate reconstruction at this site:
http://www.or-live.com/distributors/NLM/rnh.cfm?id=261 .
It requires downloading Real Player. There is a transcript, if you don't want to view the video.

There is also one that mentions craniectomy that I might watch (they didn't film my procedure in November, dang it!): Procedure to treat Chiari Malformation http://www.or-live.com/distributors/NLM/rnh.cfm?id=161 .

Tuesday, December 11, 2007

Adenoid Cystic Carcinoma in the news

From the Los Angeles Loyolan: English Professor dies of rare cancer at 49 - Dr. Scott Odom died of rare form of cancer last Friday.
http://media.www.laloyolan.com/media/storage/paper803/news/2007/12/03/
News/English.Professor.Dies.Of.Cancer.At.49-3127825.shtml

Healing is not without pain

I think I have discovered why some folks get hooked on pain meds after an orthopedic surgery (is the skull bone considered orthopedic?). Saturday night was a killer - lots of pain, and it freaked me out more than I would like to admit, since I knew extra pain might mean rejection of the plate or infection of the surgical site. After all, I had had little pain up to that point, and figured I was home-free. The pain lessened overnight, so I went about my business Sunday. Since then, I have had increased levels of pain, but have managed things with ibuprofen only (about 5x a day). So, I stopped by the surgeon's office on the way home from work today, just to see if they could more clearly define the term 'more pain' as a warning sign of trouble. Due to the ice storm that hit Omaha last night, they had a slot to slip me in (not my original intent, at all, I just wanted some information, but they were great to give me an appointment at short notice), and I got to see the whole team: the expert PA, the surgeon, and the nurse manager. I was reassured by all that there are no evident signs of infection or rejection, and the healing seemed to be taking a regular course. All that is happening is that the nerves are starting to wake up and/or knit back together, and are complaining loudly about the rough handling they had back on November 15. In the doctor's words: "The good news is that you are getting sensation back in that area. The bad news is - you are getting sensation back in that area." The doctor didn't see any need for a different pain medication at this time, saying that ibuprofen is the way to go, and my 2 grams per day is still below the daily limit for that drug. I am very relieved for his judgment and the reassurance given to me by the PA, as I wasn't looking for any further pain meds at this time. I have a practically new bottle of oxycodone that I have ignored since the Monday after surgery (hate what narcotics do to my innards, plus the drug didn't seem to cut the pain as well as ibuprofen, even in the days just following the surgery). But I can sure see how someone else might say - gee, I could go back to this stuff now - and then just get used to it, hooking themselves long-term on the pain medicine. Healing itself is a painful process (as is life, but that is for the future philosophy blog I might write). I have always known that about healing (many surgeries and boo-boos in my background). This time seems different, since it is my brain-pan we are talking about, and I really want to take the best care of that area as I can!
Now, does anyone know how to correctly dispose of pills that are no longer useful? Just let me know, and I will spread the word here.
Update: Suggested by a librarian and fellow blogger - Mix Leftover Meds With Kitty Litter http://www.msnbc.msn.com/id/21641396
And these posts by the Assertive Patient blogger - Dumping Leftover Drugs http://www.assertivepatient.com/2007/12/dumping-leftove.html
and, How About Recycling Leftover Drugs? http://www.assertivepatient.com/2007/12/how-about-recyc.html
Someone at the university med center had suggested that I find students that are going for their missions overseas, and offer the drugs to them. Wrong, wrong, wrong. They can't take them, nor can the faculty member in charge of the program take them, so dispose of the things before your kids and your kids' friends start selling them for lunch money, or taking the drugs themselves: Painkiller Abues Persists Amid Drop In Teen Drug Use http://www.freep.com/apps/pbcs.dll/article?AID=/20071212/NEWS07/712120340/1009

Thursday, December 06, 2007

Healing well, though sad time in Omaha

While the world is going crazy outside my door, I have been healing up just fine and getting ready to head back to work next week. My heart goes out to the families that had such terrific loss yesterday, and to our city as it works together to heal in a different way.

Friday, November 30, 2007

Adenoid Cystic Carcinoma time capsule from the web

Over the past few months, I have been using my librarian hunting skills and web search services and archives to locate other sites that discuss in some fashion Adenoid Cystic Carcinoma. These links are either from or about specific people, or research that has gone on in the past on this disease. I am linking to these only as an archive of sorts on my blog, as a way to keep the individual stories going.

If you know of other links that I have missed, just send them on to me in a comment. Remember - I have comment moderation turned on, so I have to forward your comment to the blog. It won't show up automatically. I am on the 'net daily again now, so your comment should show up soon.

Blog: The Party's Over - by Kelly, an ACC survivor (not an active blog)
http://chinookbug.blogspot.com/

An MSN Group for Madison, a survivor that was diagnosed with ACC at age 8 in 2001
http://groups.msn.com/MadisonsACCsite/

For some reason, the journal Nature has a ton of ACC images on its site. The link is to a specific Google images search.

Dan Sullivan's story on the LoveHopeStrength site: http://lovehopestrength.com/everest/archives/category/trekkers/dan-sullivan/

William L. Heiberg's obituary at the United States Military Academy site: http://www.aogusma.org/Class/1961/Heiberg.htm

The Penny Brohn Cancer Care (formerly Bristol Cancer Help Center), a complementary therapy center in the UK, has a story in their 2004 newsletter about Robert Ross, an 8 year survivor of ACC: http://www.canceractive.com/page.php?n=444

Cristina's Wings - the Cristina M. Tolentino Trust Foundation. This Foundation was formed in 2006, and "supports and encourages children for higher education." The foundation also provides grants to schools. Ms. Tolentino's biography is linked off the foundation page: http://www.cristinatolentinofoundation.org/

An About Me page by Gervase Markham, an ACC survivor in the UK: http://www.gerv.net/aboutme.html

A tribute to Janet Trevor on The Yul Brynner Head and Neck Cancer Foundation site: http://www.headandneck.org/about/trevor.htm
This woman's story and how she lived her life was an inspiration to me when I thought they would be taking my ear. This is where I got the idea of a prosthetic ear for every holiday, folks. I hope I live my life half as well as she did hers.

Sandy B.'s story at the Massachusetts General Hospital Cancer Center site: http://www.massgeneral.org/cancer/about/environment/wallofhope/sbaer.asp
She was diagnosed with ACC in 1996.

Kathryn (Kit) Kane's story on the M.D. Anderson newsletter site: The First Step is the Hardest http://www.mdanderson.org/publications/network/display.cfm?id=DFA6463C-8FC7-11D4-80FA00508B603A14&method=displayFull&pn=8F5F110C-A318-46EA-8D0BD00E7D3770ED

Links to Parotid Tumor Information: http://www.patientsforum.com/Link4.htm
This site helped me a lot last summer by seeing other's photos, when I faced my own parotidectomy.

Terry Carson's story about receiving IMRT therapy, on the Varian Medical Systems (radiation machine company)'s site: http://www.varian.com/pinf/cps166.html

Linda A. Petersen's memorial on the Wisconsin School Music Association site: http://www.wsmamusic.org/LindaPetersen.htm . She was one fine lady. Among her many honors, the WSMA music library was named after her.

Thursday, November 29, 2007

A positive story about someone who had more surgery than I

Thanks to Siobhan, here is an inspirational story about a teen who had much more surgery than I went through, and is overcoming his limitations:

Sky High Future: Local Brain Surgery Survivor Takes Ballet, sculpts art
http://www.redding.com/news/2007/nov/27/sky-high-future/

Me? Hey, I got to drive 50 highway from Lees Summit to Sedalia last night. I felt like I was really doing something, too!

Wednesday, November 28, 2007

Still walking on air today

I am still so happy that I am around, healing up, and getting into living again. Feel like Scrooge must have felt when he woke up after being visited by his spirits. Something else the doctor said yesterday: even though the critter was not malignant, it was growing, and in his estimation, would have broken through to the dura in just a couple of months. That would have caused a whole different operation, one that I might not have walked away from just the next day, as I did this one.
I am just so glad the pain is out, and as it looks, the way is limitless for me. Not sure that all of this will spread to complete good will towards all my fellow men (found myself talking to the other drivers about their driving habits in traffic the other day - darn it!), but it goes a long way. Sending love and hugs to all of you. Here's for a differently-exciting 2008!

Tuesday, November 27, 2007

And the envelope says - no adenoid cystic carcinoma present!!

Biopsy: NOT malignant, NOT ACC; but no idea on what the critter was.
There are a couple of ways that adenoid cystic carcinoma can progress - through the lungs, bone, liver, or the head. What they whacked out of my head on November 15th is NOT ACC. It is NOT malignant. But they really don't know what it is. It was fleshy, not cacified, so not really a pearl (or at least, nothing that one would want to mount in jewelry.) The dr. commented that it had the appearance of a dermoid cyst, but those don't usually form in the bone, but in soft tissue. I didn't get to ask him, but assume that this is a 'one off', that I shouldn't get another one going. But knowing me, I just might.
NOT malignant - what a relief!! And this whole operation was not a waste, remember - the thing was growing, and my headache was pretty intense (since I haven't experienced anything up to that level of pain since the surgery, either on or off narcotics).
Ah, I just have to say it one more time - NOT malignant. Sweet.

Stay tuned - I get biopsy results today

In case I have regular readers of this blog (and I think you know who you are!!), for which I am grateful, I just wanted to let you all know that the dr's office said the results are in. I see him and his staff at noon today - my preference is to get the biopsy news in person. I am more sure of this method than ever, after receiving the MRI results over the phone last month. Hearing the words "there is a suspicious lesion" over the phone line, while by myself at home, just didn't do me too well. (The words "didn't do me too well" are a euphemism for "I wanted to throw up". ) Getting the news in person, where I might be able to ask questions (if the brain still works past any shock I may receive) is a much better method for me. You might experience different mileage with this method, however, if you should get your own cancer (no one else should get this stuff - I wouldn't mind being the last person on earth with it.) More later, folks.

Sunday, November 25, 2007

Adenoid Cystic Carcinoma in the news

A story from Ohio: Young Mother Battles Disease
http://www.springfieldnewssun.com/hp/content/oh/story/news/local/2007/11/24/sns112507grigsby.html


If the above link doesn't get you right into the article (I think this newspaper wants you to create an account - what a dirty trick!), try heading through Google first:
http://news.google.com/news?hl=en&ned=us&ie=UTF-8&q=adenoid+cystic+grigsby&btnG=Search

Friday, November 23, 2007

A Thanksgiving full of gratitude

When we sat down to turkey and fixin's yesterday, I was (and still am) so full of gratitude for all that has happened recently and during the past year. Some items from my "what I am thankful for" list for 2007:
-my friends, both with and without their own cancer experiences, who have repeatedly come to my aid with supportive emails, mood-brightening flowers and gifts that bring smiles to my face, and ready ears to listen even when they really don't want to hear more about what the heck Teri is up to these days;
-skilled and talented health professionals, who know how to make what must be done happen in the best way possible, and who understand that this particular patient really needs to know more about what happens, what to expect, and what my role will be in healing;
-this world of technology, that allows me to remain connected to people that are far away, but are only a click away through email, the blog, the phone, whatever;
-my librarian connections, who have bolstered my knowledge, and aided me with up-to-date on health information, giving me a fighting chance to successfully surmount whatever the doctors are going to throw at me next;
-the great university that I work for, which has become the center of my world for much more than the great job I have;
-the gifts of strength and humor that my mother gave to me growing up. Thanks, mom!
-my family, who sure didn't sign up for having a cancer trip with a wife and mother, but who have supported me and each other during the entire trip. I love you, Hartmans!

Monday, November 19, 2007

Watch out- post op photos













I hope to goodness that no one else has to go through a craniectomy if they have ACC, but in case they do, I have included one before and two after photos to show that it can be dealt with. (The frontal after photo shows the new body art that I have on my forehead - 2 staples). Also, please remember that no one has said yet what exactly was pulled out with my half-dollar sized piece of skull - it is still being investigated. (My money is that it has to deal with whatever my new superpower is going to be. Hopefully, it wasn't my fancy new horn bud that they removed...)
I am healing daily. Tomorrow, I get the staples in my forehead out, and the two stitches that secure the bottom of my scar near my ear. I hope to get more answers about just exactly where the titanium plate is located, and if I get to carry a "get through TSA screening free" card. I think I learn about the biopsy results in 3 weeks. In the meantime, I wish everyone a great Thanksgiving, and hope that they are able to say hello to those they are close to. I am really glad to still be kicking on this ol' earth, and look forward to more Cheeky Librarian adventures very soon. For now, I am taking things easy.

Sunday, November 18, 2007

Healing is going fine

I have a mom and a husband that are keeping me in the house and in complete healing mode, despite the urge I have to run around and see everything. Face it - I am just really happy that I am still around, considering. I was so glad to wake up and still be me.
Jeanne has asked if I remember the Girl With the Pearl [Earring], a painting by Vermeer that was also the subject of a movie
http://en.wikipedia.org/wiki/Girl_with_a_Pearl_Earring
. No, they didn't give me the pearl over my ear to take home - some wonderful pathologist is going over it with their established methods to see what the heck it is made of. I think I hear the final verdict in about 3 weeks (bone takes longer to work up than tissue). More news later, readers. For now, back to the couch! Thanks for being there, you all. I hope to get back to being a more involved member of the blogosphere very soon.

Saturday, November 17, 2007

Laying low for a few days

Hey guys - I got up this morning, fixed my own breakfast, puttered around the kitchen - did all the normal things that I refuse to take for granted. Even feeling pain is a great thing, considering what I was fearing when I went in for surgery on Thursday. Thank you all for the support, hugs, virtual hugs, flowers, e-cards (yep, I got them in the hospital!) - they all are going into the mix that will get me all healed up and raring to go. If you, like I, expected me to look like a 50's B movie star with a turban-wrapped bandage all over my head after they whacked out the pearl, we were both sadly disappointed. No bandage at all. Hardly any sign that I was even cut on, except for two staples in my forehead where they closed up the hole caused by the head frame (I was asleep, so never knew what it looked or felt like). I get the staples out Tuesday, and two tiny stitches at the base of the scar around my ear (all other stitches are the absorbing kind.) Tired - yep. Aching - oh yeah. But really really glad to be around to be tired and aching. Just talked to number one daughter, who is living in Reid, Austria (even saw her on the town webcam http://riedweb.at/webcam/#), so she knows that I am ok, and that I left the hospital not 24 hours after they took out the half-dollar-sized piece of skull and replaced it with a titanium plate. Amazing. Anyway, I am glad you were there, once again watching me take the ride and supporting me so well in your many ways. I couldn't be as well as I am without you - thank you! Now, to the couch, where Lucky the dog is warming me up a spot to snuggle on...

Friday, November 16, 2007

Teri Goes Home

Just to let you know that Teri is going home today. Great news!

Thursday, November 15, 2007

Surgery Update

The surgery went well. The lesion is removed and it had not entered the dura, which was the biggest worry. The surgeon was pleased with how things went. This was what Teri and family had hoped would be today's outcome.

Send Teri Well Wishes

Go to http://www.nebraskamed.com/patients/wellwishers/Index.aspx to post an ecard to Teri. I'm in the waiting room at the hospital, and have internet access, so will try to update the blog as information comes in. So far, its all quiet, which is good news.

Wednesday, November 14, 2007

Tomorrow is the day

I have a 10:30 check in for a noon operation to remove the alien in my head. The operation should be a couple of hours, then I have no idea about when I will be getting around after that. Watch this space for updates on any havoc I may be wreaking in the hospital hallways, as I am disguised as a mild-mannered patient instead of the Ninja Librarian!!! I may be recommending consumer health information willy-nilly before you know it.

Thank you for your prayers, emailed hugs, and beautiful flowers that have been showing up (you all are so great!). They will all go with me in memory as I get out of the way tomorrow so the surgeons can do their work.

Later, dudes and dudettes. Need to catch some sleep before the morning comes.

Tuesday, November 13, 2007

Can Adenoid Cystic Carcinoma form into a pearl?

I saw the scan of my skull today, to check out where and what the "lesion" is and what it looks like. Folks, it looks like a pearl stuck in between the inner and outer bones of my skull, right above and behind my left ear. If it turns out to be a pearl (wouldn't that be so cool?), I promise to share half the profit with the surgeons! (grin!) I had all of my many questions answered, and all of my preop lab visits taken care of today, so now I just wait for the arrival of family members and head to the hospital on Thursday for the great excision.

I know I am in great hands (literally) - both surgeons renowned for their skills and talents, even by folks that they haven't even operated on. I am more than adequately nourished, so I am ready to start overcoming the anesthesia and begin the healing process again.

The only other preparations we have yet to do is to break out the ear plugs for my glasses, so the earpiece doesn't rub on the stapled scar. For more on how to do this, if you are ever in need of wearing glasses despite painful areas, check out my earlier post:
http://cheekylibrarian.blogspot.com/2006/08/way-better-than-taking-off-earpiece.html
.

Update on the otologist and that ENG test that I took to find out why I was dizzy. He said to thank my lucky stars that I did get dizzy, since that led to the extra-hard studying of my MRI scans that have been taken over the past months, thus finding the lesion. The dizzy spells? They are gone. He said I probably had "benign..." (I didn't write down the rest of the name of what he called it), where the crystals in your ear get loose, wreaking havoc with the balance system. Evidently the crystals have settled down, since I have not had any dizziness for 3 days. I got goosebumps when the surgeon said that I wasn't even experiencing the dizzy spells in my left, radiated ear as I had guessed - it was my right ear that was causing me the trouble. (Insert Twilight Zone theme music here.) First crystals, and now a pearl - should be an interesting addition to my medical record.

Thank you for letting me know I am not alone in this. I don't want you to be left alone, either, so I have asked a guest writer to keep you up to date while I am in the hospital. In the meantime, for the next couple of days, flood me with your questions and comments. I need all the sidetracking and fact-digging I can get into as I wait for Thursday to get here.

Monday, November 12, 2007

Inquiring minds want to know...

Ok, folks, fresh off the voice mail at work: surgery will take place this Thursday around 1pm. I know the anonymous commenter left on an earlier message asked if I was 'comfortable' letting folks know the date - heck yes, as soon as I knew it, I was gonna share it! I have been running in the dark here, so have shared info as soon as I get it (I think I am supposed to get info first, but who knows these days??). At least I have time to shave the legs and maybe get a haircut. Nothing else known at this time - heading to see the otologist this afternoon, where I might hear how I did on the ENG test.

Sunday, November 11, 2007

Many questions are unanswerable. Many answers are questionable.

That was the fortune in the cookie I just opened after finding it in a cabinet (Lucky the dog got the cookie part). The message is pretty much anti-librarian-like; I want to think all questions can be answered, and the answers found are certain. On the other hand, the fortune pretty much matches up with what I am currently going through, medical care-wise. No one seems to know why I am dizzy or what will fix it; no one seems to know what the thing in my head is, and may not know much more about it after they whack it out. What a deal.
The reason the cookie was located is: today is a good day for me, and I am taking advantage of it to clean up this house a little closer to Douglas County Health Standards. Consider it the 'nesting' phase of impending craniotomy, similar to the nesting that happens before the kids arrived. I don't want to be caught by visitors with my house dirty, thank you very much! Plus I have to get it up to a higher standard, so that when it slumps a bit during recovery, I won't notice it as much.
Laughing at Spamalot and the dinner out with friends last night really did great things for me. I don't mean 'cleaning out all the closets' type of great, but catching up on all the dishes, laundry, and bills-type of great. (grin!)

Saturday, November 10, 2007

Spamalot and italian food can chase away cancer blues

...as long as you enjoy them with good friends, that is! I might have to find the soundtrack to Spamalot now - those tunes are good ones for chasing the blues away. And eggplant parmigiana, with a side of fried ravioli, yum. I felt like myself again!

Friday, November 09, 2007

After the visit with the neurosurgeon

We saw the vascular neurosurgeon today. I guess the doctor sized me up right away when he saw that I had brought one of our student skulls and the latest issue of the journal Neurosurgery, complete with 3-d photos and glasses. I am so glad I did - he referred to both resources while explaining just where the lesion is sitting and how they are going to take it out, and what parts are near and around the spot they are working on. I have forgotten most of the anatomy that he said, except that the mastoid bone will have to be drilled out a bit in addition to the outside skull piece that will be cut out (that is where the otologist comes in - evidently he is a whiz at drilling mastoid bones), and that if he can conveniently get a biopsy of the dura, he will. He said they will need to watch out for the "vein of levay". I didn't get the correct spelling for that, but he said this vein drains the left lobe, so not damaging it as they carve away will be top priority (damage could equal stroke, and the left side is where one processes words).
There won't be a cool-shaped incision - a straight up and down one will be behind my ear. He also said they wouldn't shave but a strip around where they will cut, so no wigs needed. His preference is that I will get a titanium mesh overlay on the spot, in order to keep the barrier between the skull and the dura. Evidently, if only muscle is used, it can create scar tissue that sticks to the dura, which is the only part of the brain that feels pain, resulting in headaches later. The operation should only take a couple of hours, and I should only be in the hospital for a couple of days, then home to recuperate. I shouldn't have any major limitations afterwards - he said, "No power lifting" - as if there was a danger of that happening. I asked how soon this would take place, and he said he would have his scheduler start working on it. Maybe next week, maybe the week after.
It was a lot to take in. A nap is in order.

Wednesday, November 07, 2007

It could be that Adenoid Cystic Carcinoma is back

Sorry for not updating, but it hasn't been for lack of trying. Whenever I think there is enough to report, they have ordered another test. Still no verdict, just the statement from the doctor that he "has never seen anything like it before", and that they are going to cut out part of my skull that contains "it", currently referred to as a "lesion". The critter is living in the bone marrow of my skull above my left ear. I meet with a neurosurgeon on Friday, and an otologist on Monday, then the surgery should be scheduled after that. I am all for getting this out and letting it assume room temperature so they can inspect it to their hearts' content. Not sure yet what all will be involved in the procedure or in the healing afterwards. They did mention hyperbaric afterwards if I have trouble healing (that section was radiated, so won't react normally.) I did a whole body PET scan, and the results are "no evident uptake", meaning no active tumor growth seen at this time.
I won't lose my ear (that was a big fear of mine), but I might get to wear a wig while the hair grows back. Or, if the scar is a real eye-catcher, I could sell advertising on that side of my head until the hair grows back - who knows? The surgeon said that I should be back at work after a week (but I forgot to ask him my question whenever doctors offer their estimate of healing time: how long would you take off work if you had the procedure done to you?)
I called number one daughter in Austria to let her know about all of this and that it appears everything will be ok, and she asked if I was going to get a metal plate in my head. Nope, I told her, doesn't look like it, as they plan to cover the hole with muscle. "Too bad", she said. "You could be magnetic as well as radioactive!" Yeah, and I would get to explain for the rest of my life why I was setting off metal detectors-grin!
So, I don't know if this is or isn't ACC yet. All I know is, if it is ACC, it needs to get out of there pronto, since ACC has an affinity for the dura, that part that surrounds the brain. Evidently it really likes it, and once there, doesn't like to leave. We shall show it the door, and hopefully lose the dizziness that has kept me off the roads. I can take the pain that has been increasing, and I can even deal with the dizziness, but man, I am nothing without a car and a full tank of gas to spend on a road trip! Everyone -family, friends - have been great about getting me to and fro, and I am so thankful I know so many people that like and love me (and guys, the feelings are completely mutual!). But a gal just has to have her wheels, you know?
Tomorrow I go for an ENG test . That ought to be fun. Let's hope I can walk straight after two hours of that! And I hope that it finds out the cause of why I am dizzy, if not from the "lesion".
I will post more often, now that things are a-poppin', as they say. For now, know that I am in good hands, while still serving as an educational event for our students and residents!

Tuesday, October 23, 2007

Biding my time while waiting for more testing

Well, my various doctors weren't thrilled to hear that I have been having dizzy spells since Saturday, so I have had my MRI moved up to tomorrow afternoon (that should make for an interesting coffee break). While I wait for the test and its results, I was urged by a fellow blogger to recount my summer of the baby animals.
When I was 12, we lived in the country, and one summer had baby raccoons, kittens, and puppies, all on the bottle at one time or other. They grew up liking each other so much, we had to train the raccoons to climb trees so they would get out of the way of the neighbor's dogs. (We still laugh about the 2 raccoons hanging upside down on the gutter, watching us eat fried chicken at the dining room table.) They all lived outside, unpenned, free to come and go. By fall, the raccoons were only visiting our back door for their favorite treat - mini marshmallows - once a night. They would climb up on the screen and shake the door - their version of knocking. The time came when only one raccoon showed up, then none. We figured they found their way out in the woods in back of our house, and were laying in for a long winter (they were huge!). The kittens became barn cats (with one more tame than the others - called him Blackberry, since he used his 'thorns'), and the puppies grew into family dogs that ran with us when we rode our horses. My mom has different memories of those days (she fed the critters the most, since she was home), but it was a magical season.

Friday, October 19, 2007

One more post about the conference


A very good friend nominated me for the Bernice M. Hetzner Award for Excellence in Academic Health Science Librarianship, and I was awarded this distinction this past Saturday night. This was a very special award for me, and not just because I caught you-know-what a year ago and figured all such awards were out of my reach. Ms. Hetzner (not sure if she was a Ph.D.) was librarian at the University of Nebraska Medical Center library (where I work), and was the first librarian to serve on the National Library of Medicine Board. The facts that I was nominated by a wonderful librarian that I once had the good fortune of working with, the award was signed by still another great librarian I once had the good fortune of working with, and that the award is in honor of another wonderful librarian (in whose steps I walk daily), puts this award way over the top for me. I have added the picture of me the night of the award, holding flowers from another very good and dear friend. Wow -how lucky can one woman get!

In the interest of remaining unbiased on this blog, I have refrained from recommending one treatment over another for adenoid cystic carcinoma (that is up to your personal health care professional's & your decision, anyway). However, I now recommend the Hilton Omaha whole-heartedly, without reservation, for any conference or event that you have to plan. I would even go so far as to recommend ALL Hilton properties as the ones you should go to whenever you have a conference or event to conduct. Going with any Hilton property will always be your best decision. Everyone, from the operators to the shuttle drivers to the banquet servers, is empowered to make sure your meeting/event goes without a hitch. Of course, I am not being compensated for this statement, and will now return to my usual attempt at unbiased (and hopefully humorous) tales of cancer treatment and recovery.

Thursday, October 18, 2007

What a conference!

For more information on the conference and what went on at the Hilton Omaha, check out the conference blog: http://midwestmla.org/ConferenceCall2007/. I especially like the picture of me taking a picture - that is true art, Clare! The conference was full of great speakers, excellent vendor exhibits, worthwhile Continuing Education classes, Award presentations, and Posters and Papers. Fun was there to be had as well, with good music, great food, tours of the Omaha area, and many opportunities to network with old and new colleagues. I think we broke some long-held stereotypes of how librarians must act. It was great meeting the library science students and new graduates - I have faith that my profession is in the good hands of those most likely to carry it on to future generations.
I have another post about the conference that I will enter tomorrow, before I head back over to Adenoid Cystic Carcinoma news. For now, I am resting. Go out and play!

Thursday, October 11, 2007

Stepping out until the 17th

Signing out for a bit, as I am among over 50 members of a conference planning team that have finally arrived at the date of their long-anticipated conference: the 2007 Midcontinental/Midwest Joint Chapter of the Medical Library Association Conference http://www.mcmla.org/2007 . If you want to catch up and keep up with the news about what librarians from 16 states and one foreign nation are up to, here is the conference blog: http://midwestmla.org/ConferenceCall2007/.

Sunday, October 07, 2007

Adenoid Cystic Carcinoma turns up in body parts other than cheeks

Thanks to Molly's comment on my last post, I have another blog to add to my blogroll on the right side of my page: http://mebrawley.blogspot.com/. I know some of my readers might know of ACC of the breast survivors, and it would be great if we could please get them in touch with Molly, who has just started her trek along with us down ACC lane. I am so glad Molly had someone really strong and stubborn on her side (in the form of her mother-in-law, Ginger) - we all need a strong advocate during those trying times. I love my husband dearly, and he is the best supporter in the world, but my best advocate is my friend Siobhan. Let's just hope I won't have to enlist her aid again any time soon.
The docs say that if anything shows up in my next MRI, we can do a PET. When I said that PETs don't usually work well with this type of slow cancer, he agreed, but said that was the next best plan of action. If it took me 3 years to grow a tumor of about 2mm in size that finally caught the surgeon's attention upon opening me up (when the CT scan missed it, and the needle biopsy missed it), I have little faith in scans of any sort until the critters are big enough to not be missed. He also said that pain is not usually associated with this type of cancer. Well, no words here that I can print - let's just hope he could tell my facial expression as I remembered the long nights of pain during those 3 years, relieved only by cutting out the tumor last June, that I might not believe him at that moment.

Thursday, October 04, 2007

Having Adenoid Cystic Carcinoma means frequent check ups.

I just had my 4th checkup with my head/neck surgeon, and my 3rd with my radiation oncologist, luckily falling on the same day. My radiation oncologist is on a 6 month schedule. He checks my head out for signs of the original or a new, different cancer appearing as a side effect of the radiation. Oh yeah, they say that on the release form you sign before you undergo the first treatment, like offering you a side order of cancer to go with your cancer (I think Cancer Vixen said that). The head/neck surgeon is on a more frequent schedule, every 3 months. While I would rather be a once a year type of gal, I told him that I would show up for the 4x a year only if he made sure I saw students and residents. I don't want to waste such an educational opportunity as this rare cancer offers, after all. Now if I could only find a bench scientist that is interested in discovering what makes this type of tumor tick...
The upshot was, neither of the doctors were pleased to hear that I have been having pain in my cheek again, so it is MRI time again. I am glad my eyes will be covered in the MRI tube - by now, I would have memorized any scratches or graffiti that the inside walls held. Maybe I will suggest that - each patient in the MRI tube can leave their name, like 'Kilroy was here', so the next patient can keep up with who has been in there last. At our last library book sale, I picked up a book that gives the history of the scientist that developed the MRI. I will let you know if there are any juicy parts to the book.

Tuesday, September 25, 2007

How to create a blog, thanks to Jen

Thanks to Jen's comments on my last post of links, I have some links here that should help anyone that is considering creating a blog of their own to record their experiences, either in or out of the cancer world. I use Blogger, owned by Google, since my email id and password work for the blog, too (and how many ids and passwords does a person really need to have in this life??) I also like Blogger for its ease in posting pictures, and for their already-created templates, since my goal is to write and not crunch code. There are other very good blog software programs out there, in addition to Blogger. Some links for you to choose from that are free:
Blogger http://www.blogger.com
WordPress http://wordpress.com
Sampa http://www.sampa.com
Weebly http://www.weebly.com

Some sites offer a blog creating service on a particular topic. eCancerAwareness has a place where you can create a free blog on their site.

Your hardest duty when creating a blog is probably deciding what to name it. Just know that your story is worth telling, and worth telling in your own words. Keep blog posts coming - that is the second hardest thing, blogging consistently.

You will probably run into ads offering you great riches if you start selling ad space on your blog. That is an individual decision that you have to make. I chose not to accept ads on my blog, since this is me talking, and I don't want to muddy the message. On the other hand, if I had a blog about my favorite type of tractor, say a 1953 Super H Farmall, having ads on the blog might be just what my readers want to see.

Just remember that your blog should be written in the way you speak, not how you think. Which means that my year's worth of posts have been a long conversation with you, my reader. I only hope it has been an entertaining and informative one!

If you create a blog, please let me know what the address is. We are in this world together, and if you are writing on a topic I like to read, I will add you to my links in one of my 8 blogs-honest!

Sunday, September 23, 2007

Searching Adenoid Cystic Carcinoma using the Internet

In case you can't see the Links section on the right side of the page, I have added searching links for Google, Google News, Google Blog Search, ClinicalTrials.gov, and PubMed.Gov. You can click on the Search links, and retrieve what is currently listed at those sites that has to do with Adenoid Cystic Carcinoma. The PubMed search is not currently limited to date - I may choose to list only the last 3 years at a future date. For Google, I only search for adenoid cystic, not the three-word name, since (for some reason) more results appear when I only use the two word phrase. Here are all of the links I currently show on the right side of my blog:

Monday, September 17, 2007

I have been feeling the urge to organize my photo collections

One thing I promised myself that I would do once radiation was over with last year (and am holding myself to it) was to organize and scan all of my mom's and my photos. I don't know if it is the need to revisit life's happenings (I could totally skip ages 13-17, thank you very much) or the urge to simply peel my mom's photos off of her 'magnetic' photo albums once and for all (one is brand named 'Valiant' - oh, yeah, it is hanging on to every one of those 60's era Polaroids and not giving them up). I visited a photo store here in Omaha - Archiver's - and bought her a new, safe, acid-free photo album that will hold her pictures that I can pry off of the Valiant. For those photos that won't pry off intact, I am scanning the entire pages into a graphics software, and cropping like a mad woman to make individual photos, enlarging and smoothing out the old scratches along the way.
If you are interested in taking on photo editing, there is a free class at Cnet on Scanning Photo Basics:
http://photo-scan-basics.classes.cnet.com/
. The class also mentions a free editing software download: IrfanView4
http://www.download.com/IrfanView/3000-2192_4-10021962.html
. I have not used this - I use iPhoto, and am considering Adobe Photoshop Elements for the Mac (just considering, haven't bought it yet.)
Whatever you do, make sure you keep a backup of the photos (your safe deposit box has room for a few CDs), and add captions somewhere so a year from now folks will not have to wonder "is that Uncle or his wife or the neighbor at the old 5th Street house?". If you have digitized a collection of photos, and would like to publish them in a book format to give to loved ones, there are services on the Internet for that, called print-on-demand. iPhoto (a Mac program) encourages creation of photo albums/books and uploading to a professional printer for not a lot of money (30pages in a hard bound book under $50): http://www.apple.com/ilife/iphoto/. I have purchased 4 of these for retirement and presentation gifts at work, and they are beautifully constructed. The online photo site Shutterfly has photo books for sale, and Flickr has partnered up to offer many products with which you can publish your photos. Picaboo (love that name),
Lulu, and Viovio
all offer similar services.
We all have a story in us, and maybe the diagnosis of cancer has pushed your urge to share your story with loved ones and future generations to the front. Hopefully, these print-on-demand services will help you share it while highlighting your own personal style.

Friday, September 14, 2007

More news about Adenoid Cystic Carcinoma

This September 14th article from Annapolis describes a fundraiser, and links to a holistic clinic in Switzerland where a fellow ACC survivor is getting treatments:
http://www.hometownannapolis.com/cgi-bin/read/2007/09_11-37/CKI

And here is a link to the archived article (original date: August 19, 2006) that Julie Anderson of the Omaha World-Herald wrote about the Cheeky Librarian blog (you might be able to read it if you sign up for a free trial of HighBeam Research): http://www.highbeam.com/doc/1G1-149719267.html. I was pretty excited about the article last year - I hoped it would lead others with health questions to their nearest library, instead of surfing the net all alone at 4am. Our consumer health service statistics did show a small increase, so maybe those folks read the article and called the library.

Saturday, September 08, 2007

Adenoid cystic carcinoma in the news again

Family fights rare form of cancer: http://www.dailysouthtown.com/news/547120,cancer-907.article
I found 17 in Nebraska with my kind of cancer, which can have a primary location of any secretory areas on the body. The national cancer statistics don't list where the cancer starts, so I don't know if anyone in Nebraska with ACC is 'cheeky' like me or not.
The family started an organization to raise funds to help further research on this cancer:
Attack ACC http://www.attackacc.org/. The funds raised will be sent to the University of Virginia http://www.healthsystem.virginia.edu/internet/cancer/teampages/moskaluk/ACCdonate.cfm. The University also maintains an ACC tumor registry http://www.healthsystem.virginia.edu/internet/cancer/teampages/moskaluk/ACCregistry.cfm, but I haven't quite figured out how the process works to send my tissue samples (for example, are they still around in the hospital somewhere??).
The Attack ACC site has a good description of the progress of ACC on this page http://www.attackacc.org/page7.html. Knowing that this might be my progress (but also knowing everyone is different) is what keeps me focused on getting things done in the next 5 years or so, but the sooner the better.

Thursday, September 06, 2007

Solo road trip - wonderful!

I took off this past weekend on a solo road trip to visit parents and relatives in Missouri. This was my first solo driving since last year, and I relished every minute of it. Don't get me wrong - I love traveling with my family. I also love traveling solo.
So that is why there were many Ninja Librarian sightings all up and down I-29 in Iowa, and I-70 across the middle of Missouri. I haven't seen the photos turning up in the Enquirer yet, but give them time...
Update on treatment side effects: I had many adventures with eating - the most successful was the fried eggplant that my mom did up for me one night. While at her house, we ate only meatless meals - farm fresh produce, the fried eggplant, cantelope - good eating! Since I am not losing weight (dang it), I know I am adequately nourished. My year of covering my face (the rough estimate from the radiation folks was to give it a year) is nearly up - it will be the pain or lack of when in full sun that will either keep or lose the face-covering hat. Lucky for me, the days are getting shorter. I have had more pain in my cheek/neck/head lately, enough that it sidetracks me at work - not thinking it is a sign of anything returning (yeah, right, and I have a bridge to sell to you if you believe that! ), probably just more signs that my nerves have healed up. I will optimistically hold that thought, and discuss the new pains with the head/neck surgeons when I see them next month for my checkup.

Sunday, August 26, 2007

Adenoid Cystic Carcinoma - What to do after the first treatment and recovery

Lilly posted a comment on my One Year blog post, but I will answer her here. If you are one year, two years, ten years out from the initial diagnosis and treatment of Adenoid Cystic Carcinoma, congratulate yourself that you are where you are. Hopefully, you are still being monitored periodically by your initial cancer treatment team, or your crack family physician is prescribing yearly checkups/scans to make sure that the ACC hasn't grown in the same or other places. (If not, you better find a team to be on your side quick.)
If, like Lilly, you are experiencing pain or other symptoms, go find a clinic/teaching hospital/some health facility that will look you over and check for recurrent cancer. Don't just sit - that won't ease your mind or help you in the long run. Don't depend on a blog like this to get you to the diagnosis level of your symptoms - blogs are just information (hopefully supportive), not hands-on health care, and you need to find the human experts that can diagnose. Get off the computer and get yourself to a clinic! The visit can change your life!
If all is going well, and you want to keep up with news about treatments, support offered, or offer support for the newly diagnosed, join any of the online support sites I have listed in and next to this blog. If you want to find an in-person group nearby, ask your local library if they can search a list of support groups, or ask your care team about groups that they know about (the SPOHNC link is also a good source, if your ACC was in your head/neck). You may need to do some initial footwork, but in the end you should find a group that will give support back to you. And there isn't a time limit on seeking support for dealing with cancer and its lifetime effects - we are lifetime members once we get that diagnosis.

Other sources:
-Here is a clinical trial search for ACC - clicking on it should get you to any trials currently open for treatments surrounding this type of cancer (there aren't usually many).

-In today's Parade Magazine, there is an article on cancer patients needing rehabilitation (instead of just chemo and radiation, and back to work we go). They give a list of links for more information on this page: http://www.parade.com/articles/editions/2007/edition_08-26-2007/Intelligence_Report#clickhere_anchor

And I quote the list of links here, since I don't know how long that link will be working:
"For a list of doctors in your area who specialize in cancer rehabilitation
, email the American Academy of Physical Medicine & Rehabilitation (AAPMR) at cancerrehab@aapmr.org
Informative websites:

American Cancer Society (ACS)
www.cancer.org
1-800-ACS-2345

National Cancer Institute (NCI)
www.cancer.gov
1-800-4-CANCER

Vital Options International
www.vitaloptions.org
1-818-508-5657 "
Thank you, Parade Magazine!

Finally, pay attention to yourself and your gut. I bet your original diagnosis didn't come easy - this is a sneaky kind of cancer, and doctors, figuring the hoof beats they hear are horses, not zebras, often jerk us along through testing or fiddling with other possibilities before coming to recognize it for the zebra it was all along. When/if the ACC comes back, it can still be missed - just stay strong and keep reminding everyone on your care team that you have ACC in your history, and you want to rule it out before they start listening for horses again.

Saturday, August 25, 2007

Having Adenoid Cystic Carcinoma makes one fearless

I am so mad I could chew nails. Some punk kid and his punk buddy just came into my side yard gate to try and take one of the bikes that are up next to the house. What they didn't know was, funny enough, both bikes are broken. When one tried to ride off on one of the bikes, they had to drop it, yelling, "it don't work", and started hightailing it over to the store parking lot across the street. Before they made it across the street, Lucky the dog was barking his head off, and he and I went out to the porch for a look-see. Seeing the bike in the front yard, I grabbed it and started walking it back to the side yard (remember, 'it don't work'.) One of the guys came back to pick up his bike (which looked suspiciously like the number one son's bike that was taken in broad daylight about a month ago). Throwing the bike - one-handed, I might add, so I must be over the radiation tiredness for good - I told him to keep himself and his buddy out of my yard, wishing I had found my digital camera in time to take his picture, and not caring that my face is more swollen than usual (I was hoping I was one scary witch in the porch light, if you want to know the truth. Deformities caused by cancer treatment should come in handy for something once in a while.) Naturally, he denied that he was the one that took the 'don't work' bike (probably wasn't - he might have been working on the other one, that also 'don't work'), and picked up his bike and left the same direction that the other guy had taken off. Mad just doesn't describe what I felt, and what I am still feeling. I want to mine the yard. I want to set up a web cam with a direct feed to the police station. I want to have Rambo on speed dial AND be able to join in kicking butt when he arrives. I may not have any power over this cancer taking over the rest of me, but by golly, LEAVE MY STUFF ALONE. Even the 'don't work' stuff.

Friday, August 24, 2007

News that we have lost a fellow Adenoid Cystic Carcinoma fighter

I saw this in the Hometown Weekly (Michigan) news today:
Woman Kept Smiling During 21 Year Fight Against Cancer
http://hometownlife.com/apps/pbcs.dll/article?AID=/20070823/NEWS19/708230714/1036

Andrea O'Connell's story shows that we are a tough bunch. There will be a fundraiser for the Adenoid Cystic Carcinoma Research Foundation in her memory in April 2008.

Saturday, August 18, 2007

Since there is a Breast Cancer Barbie, there must be a Ken to match

Right off the bat, I want to say that I hope you act/volunteer/donate to whatever cause that you feel led to. For me, I am not too thrilled with all of the pink ribbon stuff that manufacturers do up, in the guise of donating money to support breast cancer research/awareness/whatever they say in order to get folks to buy their wares. For one thing, more money would go to said research/awareness efforts if individuals just sent the money without buying the Kitchenaid mixer or Campbell Soup first. And another thing-the other cancers out there aren't ever mentioned, just breast cancer. It is amazing that one cancer has got the marketing savvy, but hope that some of the awareness in the world spills over to the other types of cancer, because there is plenty to go around. Based on research a colleague and I did this past spring, it is estimated that a baby born in the U.S. this year, 2007, has a nearly 42% chance of experiencing cancer - any cancer - in its lifetime. There aren't enough colors in the rainbow to make ribbons to cover all of those cancers, so folks will just have to remember to fight Cancer, with the big C.
Saying that, I want to join in on the call for designing a prostate cancer Ken to match up with the Breast Cancer Barbie that was debuted last year. Here are some comments on the Cancer Blog at that time: http://www.thecancerblog.com/2006/08/18/breast-cancer-barbie-doll/ . I had hoped that the Barbie was designed more realistically, maybe showing how to cope with working at a caring for a family and/or career despite experiencing side effects of treatment; set her up with a computer file that is linked to her support system (thank you Apple , for keeping me connected with mine!); make sure she becomes a member of the Livestrong community; if she is not the one that is experiencing cancer, get her to be a volunteer for the American Cancer Society, or the Komen Foundation, or a hospital volunteer in the children's cancer wing... that sort of stuff. So when Jeanne Sather put out a call to design Ken to be a spokesperson for prostate cancer, I jumped. (I would also jump at the chance to design any type of doll to signify the experiences of my head cancer, folks. They have dolls going through pregnancy, so having one go through radiation treatments and a parotidectomy isn't much of a stretch, and eliminates any ticklish discussions about the stork vs. where babies really come from.)
So, if Ken is to become the spokesmodel for prostate cancer, his box should include: 2 baby-blue awareness ribbons, one for him and one for the human playing with him; an Information Rx card from MedlinePlus.gov (the BEST place to get information when you get slapped with a diagnosis like that); a computer for him to log on and join up with appropriate support groups; a book on how to be a good caregiver for Barbie to read; a pamphlet describing all of the different types of treatment available (cryosurgery, radiation, prostatectomy, and the watching/waiting method), which would include the side effects of each; a list of doctor appointments that comes attached to his PSA (Prostate Specific Antigen) test results; and finally an insurance benefits booklet to review to determine if his insurance covers the treatment his doctors decide is best for his type of cancer (it would be written like those choose-your-own-ending books - pick this treatment, expect this type of health and financial ending. We need that type of book for cancer in general RIGHT NOW for our national and state representatives to read and digest before they come up with any further health plan work in this nation). The toy company should include a dust-covered workbench or item of exercise to signify his lack of energy during treatment, but it could be dust made with that temperature-sensitive paint, so after his treatment is over and when he feels more like going out and playing golf or going to work on his hobbies, all the human would have to do is run it under warm water and the dust disappears. I don't know how to signify the permanent loss of things cancer causes - in this case, sex, normal voiding, normal living (just as I wouldn't know how to have a doll lose its taste in the case of head radiation). On the outside of the box, there should be something that says a portion of the sale goes to the Prostate Cancer Foundation http://www.prostatecancerfoundation.org. , if that is the premier foundation for this type of cancer. Now, what good such a doll would do is anyone's guess. I just might find a Ken and do him up as described above.
Take a look at the other comments on The Assertive Cancer Patient blog, and add your own here or there, please.

Friday, August 17, 2007

Cancer in the comics

If you have been following the Funky Winkerbean comic strip, you know that one of the main characters has her breast cancer return. Unfortunately, King Features Syndicate does not allow searching of its archives anymore (without joining up to the site), so I can't link to particular strips that have spoken to me since my own diagnosis last year. The artist, who published a book on the cancer story line, titled "Lisa's Story" back when she was initially diagnosed, is planning to publish another book on the current story line this October. I have appreciated the realism, sensitivity, and the humor that the artist has shown in these strips.

There is more about the cancer story line and how it will end (but you probably already guessed that) mentioned in this article: A Funkier Winkerbean http://www.freetimes.com/stories/15/7/a-funkier-winkerbean .

Saturday, August 04, 2007

Best to face cancer with a dog at your side

Jeanne, author of The Assertive Cancer Patient blog, is linking blog posts by cancer bloggers again, and this time we have gone to the dogs: http://www.assertivepatient.com/2007/08/cancer-dog.html . Jeanne has also written about Animals At The Office, and how to get a service dog of your own. Our family dog is not an official service dog, but he has done his best to get me out and moving during the past year. He has also been a middle-of-the-night companion when I was up due to pain (especially during the years before being diagnosed), and when I was curled up on the couch resting during radiation treatments. Lucky the dog, so named because he is very lucky, and because we keep trying to tell him he IS a dog, is the latest in a long line of the established breed of Comfort Hounds. He is shown here on his favorite pillows, and the couch that we bought because it matched most of his fur. He has never asked me why I wear a funny hat, or look different - and can recognize me at the end of the day as the "giver of treats" (we try to keep him to one treat a day when we come home, but now that the teens and his Boss are all working, I think he is back up to 4 a day. He can play us like violins!). If I ever write a book about his life story, it will be titled, "Some dogs live outside". Whenever I say that to him, he just gives me an unbelieving, almost shocked glance, knowing that I am telling tall tales. He is getting older - now 11 - and figures his ranking in the family is above the teens (he treats them like puppies), and below the Boss and myself. He is a great companion for me in the evenings, with number one daughter leaving for Austria, number one son working evenings at Walgreens, and Lucky's Boss enjoying his shift as a university security officer. Lucky would like to think the critters in the neighborhood fear him, but the squirrels and rabbits know about how far he can run in his short bursts, and maintain posts on the perimeter of the yard. Once, he was very surprised to look out the patio glass door to see a baby opossum looking right back at him - I thought Lucky was going to learn how to swear in English that evening. Another time, we were visiting grandparents near Kansas City and were all in the car getting ready to hit the road for Omaha. The windows were down, and grandparents were still saying their goodbyes, when a neighborhood cat strolled by the passenger side. Shocked that a critter would dare come that close to the Boss' vehicle while he was on duty, Lucky leapt out the window and landed, ninja-like, behind an even more shocked cat. They both took off up the street, the cat bypassing 3 perfectly good trees before he finally climbed one that enabled him to glare forcefully down at the interloper that disturbed his peaceful afternoon jaunt. Lucky came back, proud that he had served the Boss. (We still wonder what that cat told his buddies about the flying dog that interrupted his day.) Lucky is a great travel companion, probably since the Boss took him on his grocery delivery rounds when he was just a pup back in Macon, Missouri. Even today, if we need him to be out of the house, we put him in one of the cars in the garage (yes, it is a safe place, good temps, everything), where he will wait patiently for whoever comes back out to either take him on a trip so he can have his ears flap in the wind, or to take him back inside. We can't put him in the backyard or in a closed room of the house and have him wait patiently - he will bark and whine until he is set free to rejoin the pack.
I think we are the lucky ones to have him agree to live with us all these years, and I am very lucky to have his companionship when the days are dark or if I start feeling sorry for myself. He is ever ready to come over and demand a petting session, or a good round of chasing the sock-knot (a knotted sock, the only kind he is allowed to chew) or tennis balls. His idea of luxury is to have a brand new bone from the pet store, which he always buries somewhere in the house (using virtual dirt, hoping that we don't notice it. Being respectful, we don't.) until it is sufficiently aged for his taste.
If you or someone you know is experiencing cancer and all the upheaval it brings, and you don't have a pet handy, I bet you know someone who might loan you one for a while. Lucky was great at getting me outside of my worries, demanding that I care for him and pay attention to him, while probably knowing all the time that his actions were the best treatment my soul required. But just when I think he is wise and all-knowing, like a black and tan Yoda, he will revert back to appearing as a simple dog and demand a treat, scratch, or walk, camouflaging any appearance of caring anything about my needs.

Saturday, July 21, 2007

Another person in the news with ACC

Ben Wittner, PGA instructor and trick shot artist, also has adenoid cystic carcinoma, but hasn't let it get him down. "The Art of the Trick Shot" http://www.herald-dispatch.com/apps/pbcs.dll/article?AID=/20070717/SPORTS/707170367/1002

and "Golfing artist wows the Huntington Classic"
http://www.herald-dispatch.com/apps/pbcs.dll/article?AID=/20070716/SPORTS/707160330/1002

Friday, July 20, 2007

Latest travel and taste stories

I just returned from a trip to Missouri where we saw the moms and other relatives, touching base before number one daughter leaves for her year abroad. I think I drove more than 800 miles in just 4 days, and held up pretty well while doing it. While at my mom's, I tried some of her home cooking, but no luck with adding meat to my diet. We visited the bulk food store in Tipton, Missouri, and I loaded up on the regulars: sunflower seeds (no salt), hard red wheat berries (cook it like rice), and fresh cucumbers, green peppers, and cantelope melon. I tried watermelon, but the fiberous netting still gets in the way. I tried some fresh tomato, but still too acidic for eating comfort. I had fun watching the family eat massive BLT sandwiches, though, while we all chowed down on corn on the cob - it is great to have fresh produce to enjoy. I was able to eat out with family 4 times during the trip - twice at a buffet, where I had all the green beans, corn, lima beans, broccoli, cabbage I could want; once at a tea room, where I had vegetable quiche (left the crust) and corn; and once at a family-style diner, where I had one serving of each of their vegetables of the day (corn, green beans, and butter beans). The Missouri Tourism board should be happy to hear that I can spend money on eating out just like the next guy!
If you have had radiation to the head/neck area, and have experienced changes to taste or eating ability, please keep on trying. Don't give up adding food to your diet - just proceed slowly and carefully, and of course follow your doctor's and nutritionist's advice.

Saturday, July 14, 2007

How Adenoid Cystic Carcinoma community sites work in the Internet

The Internet has made it possible for people like me with a rare cancer to reach out to others that share the same situation and connect, which has benefited me and my family immensely. In order to do that, I have to have a computer, Internet access, and time to communicate. No problem for me and most people in the United States - public libraries make Internet access available to their patrons in nearly every community in the country. Another plus about using a blog to create a communication forum is - the software and hosting are free. Otherwise, the costs and labor are all mine, supported by whatever money I earn or am given. I am not a blogger that accepts advertisement, so my readers should know that all the content comes from me, and links to credible sources that I locate.

Now, if I wanted to create a web site and invite all ACC folks in to communicate as a group, I would need to set up an IP address, construct a functional web site that involves monthly hosting fees, and have even more time available to maintain the functionality. I have about 3 choices for funding my efforts: pay the costs involved (and there are many and often) out of my own pocket, get advertising to pay for the costs at the risk of bruising my credibility, or do more paperwork and become a 501(C)3 non-profit organization that still needs to go out and hunt down mission funding of some sort to keep the work going.

I bring this up because I received another anonymous message about The Rare Cancer Alliance yesterday, and how it isn't a non-profit, but run by an individual, who receives any donations made on the site. I mentioned The Rare Cancer Alliance and the Adenoid Cystic Carcinoma Organization International in July 12's post, and this person probably has an alert set up for anything with adenoid cystic carcinoma in the body of a web page (I know I do). Both organizations appear to this librarian to be worthy sites for anyone facing ACC and the questions one has after getting such a devastating diagnosis. Here is more information on who is behind each site, so my readers can make up their own minds about the credibility of the information resources.

The Rare Cancer Alliance is run by one of the strongest women I have met through the Internet -Sharon Lane. She is open about her own cancer and the mission of the site in her About Us: http://www.rare-cancer.org/alliance.html . There is a Make a Donation link, which takes you to Sharon's personal PayPal account - she is the sole monetary supporter of the site, but has a ton of folks helping others in the many rare cancer forums. This site covers many more rare cancers than just ACC. She could have signed up with pharmaceutical companies for advertising - even rare cancers can generate customers - but she works hard to keep the messages on the site clear and to the point. There are many sites run by individuals on the Internet that have donation links - readers don't have to donate, but if they choose to, the means are there to do it. Donations to the Rare Cancer Alliance are not U.S. income tax-deductible, because Ms. Lane is not a non-profit organization, even though she has the makings of one. I do not know why she has not become a non-profit - not my business. The fact that she isn't a non-profit does not muddy the messages given on her site, in my opinion. Because she is open and honest about carrying the hosting costs of the site on her own, I value the existence of the site more, not less. I am very glad I have her resource to turn to as an ACC patient, and will continue to support her efforts as a fellow volunteer. If I should choose to support her monetarily, it will be my business and no one else's. I do not encourage my readers to send any of their money anywhere, since most of us are doing all we can to pay off the doctor bills.

The Adenoid Cystic Carcinoma Organization International's About Us page shows a wider mission that matches its non-profit designation: http://www.accoi.org/AboutUsACC.htm.
In addition to running a free email information group, they also fund ACC research. Their mission is only ACC. Checking their Six Degrees Badge located on their other site http://www.orgsites.com/ca/acco/, the amount is over $10, 000 at this date. Donating money to this organization, I think, is U.S. income tax deductible. I would like to know a little more about where the $10k came from and where it went, as well as who are the board members of the organization, but since this is a 501(c)3 organization, their yearly income/expense figures should be open to me as a U.S. citizen, and all I have to do is ask. They probably have an annual report as well, somewhere. I am a member of the email group, and am very impressed by the leaders on that forum - they are tireless and expert in their handling of such very difficult subjects. I hopefully have helped others as they have helped me as we successfully trek together through the ACC minefields. I am very glad to have this resource to turn to, and will continue to support their efforts as a fellow volunteer. If I should choose to support AACOI monetarily, it will be my business and no one else's. I do not encourage my readers to send any of their money anywhere, since most of us are doing all we can to pay off the doctor bills.

I have no idea why I received the anonymous message about The Rare Cancer Alliance and Sharon Lane. I am amazed to find out that there might be turf wars in Cancerland - like there isn't enough crap to deal with just by having cancer, but as patients we have to hear warnings about our sources of community information support. I am a librarian, and it is my professional duty to evaluate sources of information as to their credibility for patients every day. Both The Rare Cancer Forum and The Adenoid Cystic Carcinoma Organization International appear to this librarian and cancer patient to be credible and worthwhile community information sources for anyone suffering or supporting someone that suffers with ACC. Neither of these sites (nor any on the Internet) should ever dictate anyone's health care, but information gathered should be discussed with one's own health care provider. I would not have linked to either of these sites if I thought they were not credible. If any site's credibility comes into question in the future, I will immediately delete my links to them.

If either of the sites wanted to make their donation list more open, they could create a link to public donations as Wikipedia has under its PayPal and Moneybookers links here: http://wikimediafoundation.org/wiki/Fundraising , but not all donors will want to be public. I know I wouldn't want my donations made public! No one's business but my own (which is why I rarely claim donations, in case the IRS is reading.)

Other individual information resource sites are out there - heck, they have been around since there were bulletin boards back in the late 80's, early 90's. Just because someone self-funds their site does NOT mean the information is less credible - they may be accomplishing the exact opposite by remaining independent of advertising limitations. And if they choose to add a "make a donation" link to said site, site visitors can either do it or ignore it, same as for non-profits - no big deal. Site visitors must always ask themselves - who wrote the information, what is the primary purpose of the website, and how accurate is the information presented.

Here are my recommendations for any site authors reading this. Both individually maintained and non-profit sites should make themselves as transparent as possible on their website, in order to gain credibility with their visitors. State openly where money comes from and where the donations will go. If you have a non-profit board, state their names - be proud of the fact you are a non-profit. If there is an executive director, site visitors should be able to see their name. Visitors should be able to contact any site's authors via phone, snail mail, or email for more information. There should be a date of last update plainly visible on the site.

I know there are other librarians that read this blog occasionally - please comment. If anyone wants to set me straight about any of the sites I list to, email me directly at teresa.hartman (at) gmail.com. I treasure your opinions.

Thursday, July 12, 2007

As ACC patients, we have clout!

If you have been diagnosed with ACC, I sure hope you have joined both the Rare Cancer Alliance Forum (http://www.rare-cancer.org/) and the Adenoid Cystic Carcinoma Organization International (http://www.accoi.org/), so you can get connected with the few of us out in the world. Connecting is where we get our strength to make a difference, as reported today (actually tomorrow, July 13, 2007) in The Wall Street Journal's column, The Informed Patient: The growing clout of online patient groups http://online.wsj.com/article/SB118168968368633094.html?mod=googlenews_wsj

My one hope is that those researching this rare cancer have the sense to connect to these online communities for information. Might be time for the Ninja Librarian to start sending emails to the ACC experts, letting them know about our existence... stay tuned!

Friday, July 06, 2007

Announcing the arrival of taste

I don't want to get too excited, but I seem to be getting taste back. I tried a bit of tomato sauce, and it didn't burn. I tried a bite of an ice cream sandwich, and it wasn't waxy. Since I have a lot of bland things for me in the house, I am going to hit the HyVee for a couple of less-calorie items to try out, just to be sure. The ultimate test - my mom's fried chicken, which I might try the week of July 16 when I visit her. Still not much saliva, so I doubt that I will be lunching on paninis, croissants, or high-sugar items. But if any taste has returned, there will be watermelon on the table very soon!

Monday, June 25, 2007

The reason there is a Ninja Librarian

I have written before on my need to cover up my head from the sun during and after radiation therapy on this blog, but I thought I would tell more about why I still need to hide from old Sol. Most information sources explaining the radiation side effects - short and long term - list avoiding sun exposure to the treated area as a smart thing to do:
Radiation Therapy (KidsHealth) http://www.kidshealth.org/teen/diseases_conditions/cancer/radiation.html

Avoiding sun exposure to the treated area can be long term

OncoLink http://oncolink.upenn.edu/experts/article.cfm?c=2&s=37&ss=117&id=1611

Having had radiation treatment actually raises my chances of getting non-melanoma skin cancer in that site, so I am motivated to cover up.

Non-Melanoma Skin Cancer http://www.penncancer.org/cancerprograms_detail2.cfm?id=20

But even if I didn't have all of these motivations, remaining pain-free is a biggie for me. Remember the last sunburn you had? Remember how it felt if you went back out into the sun the next day without covering up? The sun made the burn hurt more. That is what I feel whenever I walk in front of a window with direct sun coming in, or go outside without something covering my face - literally like a slap in the face if it is bright sun. Strangely, halogen lights also get me to burning, so I actually carry my hat into jewelry stores or boutiques, just in case (oh yeah, that is just what the manager wants to see - someone covering their face in a jewelry store!). One other reason to keep out of the sun - if my skin gets irritated, including by heat, it increases the lymphadema, and I swell up on that side. Since my skin is screwed up, (but it looks great - I think I found the cure for acne), I don't put anything on my face except Cetaphil cream, leaving the sunblocks off the list of facial applications. I count on the fabric of my Coolibar hat with its 98% UV blocking to counter the sun's effects. The fabric is soft enough to not irritate my skin, too. For folks that had radiation on other parts of their body, they should consider ways to keep the affected area out of the sun - remembering that our street clothes don't do such a great job at blocking UV.

Finding ways to live while staying out of the sun can be a challenge. Oncologists may not tell you how to cope with living while you remain sun-free. My crew told me to stay out of the sun - that was it (and as I said, avoiding extreme pain already made me pay attention to this directive). I wanted to remain independent, driving and conducting business in daylight, so I searched until I found a solution to block the sun - first the visor that I wore last winter with my scarf wrapped around my neck, and now my Coolibar hat (I also bought a jacket to protect the rest of me). That is when the Ninja Librarian was born. Other folks handle the challenge in more artistic ways. I had the honor this fall of meeting Ted Kooser, former United States Poet Laureate, who is a fellow head/neck cancer survivor. When he was going through radiation treatment and recovery, he walked in the early morning hours to keep his strength up. The poems that resulted from these early morning walks were later published in his book: Winter Morning Walks: 100 Postcards to Jim Harrison. By the way, Mr. Kooser told me a very important thing - while he was going through the treatment, he never knew there was a Poet Laureate honor in his future. Anything can happen after cancer - anything.
 
Who links to my website?