Items on eBay support ACCRF

There is currently an exciting series of bids over on eBay for some items connected with Peter Tork, with the proceeds going to support the efforts of the Adenoid Cystic Carcinoma Research Foundation (AACRF). It might be fun to follow the bidding wars - the signed purple tie is already up to $420, and the red bra has reached $51. (I will have to ask my archivist buddies how one properly displays a bra and still protect it historically.) Peter Tork was recently diagnosed with Adenoid Cystic Carcinoma, and has recently been going through radiation treatment. The eBay items were donated by his fans, but he has been fundraising himself through a wristband he sells on his website: Hope On.
If you wish to donate directly to the AACRF, here is their page:
http://www.accrf.org/html/donations.php . The research on our rare cancer won't happen without private donations. I thank everyone that has donated time or money towards finding the key to unlocking the mysteries of this critter that lived in my head and (probably) travels my nerves as I type this. (And I don't even like ticks - ew!)

Happiness

I just saw this post on Zen Habits, and wanted to share it here:
All the Advice on Happiness You'll Ever Need in One Post
http://zenhabits.net/2009/06/all-the-advice-on-happiness-youll-ever-need-in-one-post/

I wish you much happiness!

Bit of an anti-climax, sorry

I went to the ENT clinic, and came out still on voice rest. They did the scope (not so bad: stuff sprayed in my throat - it is probably good that I can't taste, then a camera shoved in there recording cord movement while I tried to say 'eeeee'), and found some blisters on the cords. They surmise the blisters are from a virus, and all I need is more time for the voice to come back. If I am still like this in a week, I will go back to them for further follow-up. The only thing different about the blisters (and you KNEW I would have something different): they aren't right across from each other, like they are usually found - they are kind of catty corner from each other.
The take-aways from all this - the hoarseness is NOT from nerve palsy caused by radiation therapy; the hoarseness is NOT from cancer coming back; and my coworkers and family are still going to have to deal with a silent Cheeky for a while. We met this morning and divied up the upcoming teaching events so other librarians will be taking them. I am heading out for that Harpo Marx outfit now, very happy that I don't have any further medical inspections on my chassis...
Thank you so much for your support, your funny jokes, your reading of this blog during my waiting time. I will try to find something more entertaining for you to read on your next visit.

Update: one tired-of-not-speaking Cheeky

And cranky - very cranky. At one point over the weekend, I was mouthing things to the dear husband for him to repeat in full voice to a table full of relatives, and he was not doing what I was asking. Lucky for him, I have taken a vow to not kill a human during this calendar year. I had hoped that after feeling so powerless when I was first diagnosed with cancer and then the 'pearl' in my skull, that I would not feel that way for a while longer - hopefully, decades. (Or at least until that first IRS audit.) Watching him look at me and shake his head that he was not going to say what I wanted to say (maybe it didn't fit in the conversation; maybe he had other things he wanted to interject into the fray; maybe I was talking crazy in his viewpoint - not sure which of those or other things apply to this situation), I realized that powerless is with me again, and that it would be me and a notepad full-time if I don't get these vocal cords fixed/healed/replaced with bionic parts. Sure, I should have taken a notepad and large Sharpie to conduct my own conversations (and maybe written the messages on dear husband's forehead). Next time, I will bring along my own Harpo Marx horn, and really make a scene. Trying to figure out how to fit one of those into my next string of lectures, set for the end of this month...
Don't set up any voodoo dolls with the image of Mr. Cheeky - to him, it wasn't that big of a deal, I am sure. (I may duct tape his lips sometime soon and show him a bit of how I felt - not sure, yet.) But if I could have had Firestarter's powers for just 10 seconds, the entire table full of relatives would have gone up in flames. Not wishing any real bad things on family - just a slight toasting. It was bad enough that we were meeting at a barbeque place for lunch - and one of my favorite from 20 years ago - leaving me to have ice water as the only thing on my menu of choice. (Do they not remember that I have not had this type of food for the past 3 years? Or maybe they figure I was just being picky. I know - let it roll off, no big deal, my problem and no one else's.) I should have just skipped the whole thing, but there was a new date in one of our relative's life, and we were asked to meet them. I am REAL certain that I made a wonderful impression - ahem. I can hear the conversation as they drive home: "No, it isn't hereditary, and besides, she is only my sister by marriage. She had that brain surgery a couple of years ago - it might have caused a stroke is what we're thinkin'. " Next time, I will stay home and send my regrets. Realizing that staying home was my only true choice also brings to the fore the possibility that I may be staying home more and more, if my limitations increase. I worked so very hard after both of my previous surgeries to return to whatever level of normal that I could do and still be a taxpayer. Right now, I don't know where I can put my stubbornness and willpower, except for the not-talking part. I go back to work in my silent office tomorrow, and get strobe-scoped in the afternoon. I will post any updates here.

Adenoid Cystic Carcinoma in the news

Many of us with cancer will find this old news - we have spent years keeping our families and friends up to date with treatment news through social networking. Still, these news stories/blog posts have come to light, showing how Peter Tork is using his fan base to spread the word about Adenoid Cystic Carcinoma, as well as cancer in general. His work, hopefully, is increasing funding raised by ACCRF for the study of ACC. Some recent news articles/blogs about what has been going on:

A former Monkee with Cancer -
http://voices.washingtonpost.com/checkup/2009/06/a_former_monkee_with_cancer.html

Living in the bonus round (blog): Peter Tork, Social Networking and Cancer
http://www.facebook.com/ext/share.php?sid=92061780668&h=pK_R5&u=tU9Jg&ref=mf

Former Monkees star uses social networking to spread word on his condition
http://thephoenix.com/BLOGS/phlog/archive/2009/06/23/former-monkees-star-uses-social-networking-to-spread-word-on-his-condition.aspx

He has a site on Facebook, http://www.facebook.com/peter.tork (note: the Phoenix article above gives a fan site link on Facebook instead)

Other news:
Research published in the journal, Diagnostic Pathology 2009, 4:18 -
Expression of p-AKT characterizes adenoid cystic carcinomas of head and neck with a higher risk for tumor relapses. Researchers are interested in trying to id tumors with higher relapse risk, something all of us that have worn the tumors are REALLY interested in. Their findings on research conducted on lab specimens from 29 patients are published this article. As soon as the article is included in http://pubmed.gov, I will include the PMID in this message. From the abstract in the press release: "Our findings demonstrate a possible background for therapeutic approaches targeting the inhibition of PI3K/AKT pathway."

Cheeky still silent (well, almost)

I visited the ENT clinic this morning to get my vocal cords looked at, and had a surprise - to see the cords, they go through the NOSE. Yep, that was a thrilling experience. Anyway, they found nodules on the cords, which explains why my voice is so breathy and broken. I go back in next week for another scan that involves a strobe light in order to better see the actual activity of the cords. (If you are interested in more information regarding voice disorders, there is a great site at MedlinePlus: http://www.nlm.nih.gov/medlineplus/voicedisorders.html)

I am still on complete voice rest, but the doctor/professor that I saw says she doubts that I will be able to maintain that (gee, they DO know me at my university!). I am going to do my level best to remain silent. It doesn't do much good to open my mouth to speak anyway, since people generally ask me to repeat myself.

For me, not being able to answer any questions or offer information is quite painful - it is like I lost another sense. If I am supposed to be learning a big life lesson here, I hope it gets clear pretty quickly. (Yeah, who am I that I am asking the life lesson to be a fast one?!)

Up in the wee hours, listening to the thunderstorm

Nebraska is famous for its summer storms. The one that is approaching Omaha right now is only supposed to have high winds, hail, and rain - no tornadoes, so I may be losing power any minute. Right now, the rain is falling, the TV is on to the local station's weather crew giving updates, and the family is snoring - all is right in the world, despite a heat index of 86 degrees outside (cozy inside with our cool "bought air", as the heat pump is doing its thing quite well, actually!). Where ever you are, I hope you also have this sense of peace and contentment in your life, cozy while the storms are raging outside.

If you are looking for a great weather site that gives real-time radar, try Intellicast. Here is the link for the radar loop for my area, but you can adjust it to view your area instead:
http://www.intellicast.com/National/Radar/Current.aspx?location=USNE0353&animate=true
This is also a useful site to see where snow/ice conditions are before you head out on trips in the cold months.

How many blogs can a blogger blog?

The question came up in discussion among other cancer bloggers about how many blogs we each maintained, and if there is a "too many" number. (You can see more of the discussion on The Assertive Cancer Patient blog.)I have 16 blogs that are on my Blogger dashboard, because blogs are really great tools for librarians. My librarian blog shows up on this directory with a ton of other great librarian blogs (most having more traffic than mine, but few older than mine):
http://www.dmoz.org/Reference/Libraries/Library_and_Information_Science/Weblogs/

Librarians have always thought in blog format, in my opinion. Not necessarily as a journal tool, but as a place to record useful bits of information to share with patrons without having to go through a webmaster or committee to design a page on the net. Of my 16, 4 are fairly frequently updated, and two of those are my personal ones (librarian-related and my cancer blog). Two others are pretty much defunct, but kept on my dashboard as a record. Another one was done two years in a row for a national library conference roundtable - no idea when that one may come in handy again. One is a project with another cancer blogger that has not been fleshed out yet - left on the dashboard in order to keep the domain name current. Another 7 are blogs that I created and maintain for undergraduate workshops at our university that link to resources available to anyone on the web, since the visiting students don't have password access to our library's digital collections. I refresh the undergraduate blogs once a year, but check them once a month to make sure the links (mostly to government sources) are live, in case last year's students are still using the blog as a jumping off point for their current research.
Finally, one was created simply as a bibliography for "After Our War", a 2007 UNMC CE course designed for Nebraska physicians and mental health professionals.

Depending on what you are blogging about, I don't think you can have too many going. If I expected to add to or edit all 16 in one week, that would be way too much. But I have only 4 that need frequent updating - and since half of those are personal, that is a reachable goal.

A few of my blogs that might be of interest:
http://cheekylibrarian.blogspot.com
http://libeducation.blogspot.com
http://golocalne.blogspot.com
http://ccresources.blogspot.com
http://afterourwar.blogspot.com/

Update and a food craving out of the mists of time

First, I am remaining positive (or floating on the river of denial) that my voice is better this morning since the addition of steroids yesterday. "Better" is just incremental, but I will take it and remain silent for the rest of the day, including the hair appointment I have tonight (have already written up my note cards for that visit.) If the voice really isn't better, I go to the ENT for a scoping to see what they can see. Wish I could mail that image in - at least I still have a gag reflex, but I don't really like to prove it.

On a completely different topic - food: I haven't had much of an appetite lately, but for some reason this morning, I am craving all the stuff that I used to love B.R. (before radiation in 2006). Can steroids work that fast on a person? If so, this is really not fun - a glass of protein drink doesn't fix the cravings, that's for sure. I got to thinking about some of the first Chinese food I had when I was growing up in Missouri, where they have their own brand of Cashew Chicken that I haven't run into anywhere else in the world. (The Cashew Chicken, like Brad Pitt, is from Springfield, MO) I went out hunting that topic down just now, and ran into a recent story in the NYT Travel section: United Tastes-Missouri Chinese - Two Cultures Claim This Chicken http://travel.nytimes.com/2009/03/11/dining/11cashew.html
(My apologies for anyone that finds this unique recipe an affront to what they know to be good Chinese food. I recommend that you go to Missouri and try it sometime!) Man, what I would give for some of that brown sauce about now and have it taste good... the ol' palate just wouldn't do it justice, though.

Brad Pitt's family donates to Missouri hospital's cancer ward

Brad Pitt's family is donating $1,000,000 to St. John's Hospital in Springfield, MO to help open a new pediatric cancer wing in honor of their mom, Jane Pitt. The Pitts grew up in Springfield, MO, making this a natural thing to do to honor their mom's "passion for children's issues".

http://news.bbc.co.uk/2/hi/entertainment/8102381.stm

In the interest of 'six degrees of separation", I am a Missourian by birth, and used to drive a truck through Springfield, MO in the 80's. It just could be that a young boy played out in his yard with his siblings and saw my truck drive by, which somehow inspired him to become an actor...hey, it could have happened that way! (Ok, probably not - he's only a couple of years younger than I am.) Seriously, I give tours to young students from the 4th grade on up at our university, and we talk about the brass plaques on the walls and doors, and all the buildings named after someone. It is a great thing to give back to your community once you find yourself having 'arrived' in your profession. Only half-joking, I usually say that the first million is yours; the second million is for you to give back to the place that supported your growth into the person you became, as you see fit. Congratulations to the Pitts giving back in such a meaningful way to the community that supported their growth.

Breast cancer survivor has ACC in her family story

This news story about Long Island breast cancer survivors tells of one woman, Diane Tropea Greene, who has breast cancer, her mother, sister and brother died of breast cancer, and another brother died of adenoid cystic carcinoma -

http://www.newsday.com/services/newspaper/printedition/tuesday/health/ny-licanc1512873370jun14,0,6385440.story

Ms. Greene has written a book that examines her family's cancer experiences: Apron Strings: Inheriting Courage, Wisdom and...Breast Cancer

Cheeky one is still croaking

I am still searching for a voice. Stopped by the head/neck guys to see if they would want to see me yet, but they don't see a person until they are having trouble with laryngitis for at least a month. Since my job as a college professor requires some speech (actually, 90 percent of the time, I am supposed to be talking), this has had a great impact on my job and interactions with my colleagues and students.

With all of the cancer treatment for my particular brand of adenoid cystic carcinoma, I have been pretty lucky to not have experienced trouble with my voice before. Not figuring I am experiencing any now - probably just a virus (according to what every health professional has told me so far).

A fellow oral cancer patient is quoted in a research article I read recently about their loss of voice during treatment:
"Ok, I'm not Oscar Wilde or Moss Hart, but to have a riposte or a description or a question sitting there on my lips waiting to be shot into conversational melee and not be able to shoot it is crippling..." (Crossley ML. 'Let me explain': narrative emplotment and one patient's experience of oral cancer. Soc Sci Med. 2003 Feb;56(3):439-48) Shooting blanks here myself - maybe time or the family practice doc I see tomorrow will help things move along.

What did the big bad wolf eat so his voice would be smooth and not scare Little Red Riding Hood? Chalk? Just my luck, our university no longer uses chalkboards (grin!).

Rationing of medical scans has begun due to shortage of medical isotopes

I just saw this Reuters story: US Hospitals Rationing Nuclear Imaging Tests http://www.reuters.com/article/healthNews/idUSTRE55B3NZ20090612

I figure ACC/AdCC (both abbreviations are used to mean Adenoid Cystic Carcinoma) patients are among the most scanned of cancer patients - if you have scans coming up, you may want to check with your doctor to see if an alternative has been selected.
The article says that cancer patients will be moved over to positron emission tomography (PET) scans (PET scans use different isotopes). PET scans are not the best test to see if our particular cancer has moved on, since it is a slow cancer, and tumors can exist that won't 'feed' on the radioactive sugar and thus don't light up in the scan.
Here's hoping that they hurry up and convert that University of Missouri research reactor.

Cattlemen's Ball 2009 - whispers, mink, and tears

Ok, to get rid of any worries that the title of this post may bring - the tears were tears of joy. Now to the rest of the story... (man, I miss you, Paul Harvey)
The 2009 Cattlemen's Ball started for me and my traveling companions with a visit to the Bank of Doniphan, where we met with Angie, our contact for tickets and the vendors. Jeanne Sather (Assertive Cancer Patient) and her wonderful friend Monica rode with me out on Friday morning. It was GREAT to meet Angie and her colleagues that had worked so hard and so long on making the Ball a reality. After meeting with her, she recommended that we have lunch in the Doniphan Cafe & Steak House across the street. Tell you what - if you ever find yourself near Doniphan, which is on the road between Grand Island and Hastings, you need to stop in there for a great meal. I had the vegetable beef soup, and was really sorry that I had to leave the lucious chunks of beef alone in the bowl. The skilled and very busy waitress came over and clucked her tongue at me, asking why I hadn't eaten the beef (folks, it was chunks of prime rib - the good stuff!). I told her an abbreviated version of why I wasn't eating meat anymore, and she understood.
We went on to Grand Island where we were interviewed by a Hastings Tribune reporter. We had a good time, and the story was published on the following Monday. Unfortunately, the story is not free on the web.
A side note - the whispers started Thursday night/Friday morning for me - I lost my voice. So all of these nice people were meeting me with no voice. Wonderful. What a way to make an impression! I alternated sounding like a young boy going through puberty to only speaking in a whisper. Trouble is ongoing - have seen a family medicine professional, head/neck guys are next if it doesn't resolve.
My library director and her husband arrived in time for the evening festivities, and looked wonderful in their outfits, designed especially for the Ball. The three of us - Jeanne, Monica, and I - went out to discover what we could find for supper, and found a wonderful Latino restaurant in downtown Grand Island - Sanchez Plaza Restaurant, Market & Bakery. I was crossing my fingers that I could find something that wasn't too spicy, and was thrilled to find out that the real Latino chefs let you add your own spice. I had a great dinner! We enjoyed it so much, we returned on Saturday before driving back to Omaha. Again, a great place to eat if you find yourself in Grand Island for a stray hour. They feed you up right!
Friday night brought storms as only central Nebraska can get them. Someone told us there was 6 inches of rain - and based on what we saw at the Ball site the next morning, I can believe it. No discouraging words were heard from the Ball volunteers and planners - they, like all the Nebraskans I have known, just picked up and started working on getting things done. They had a couple of 4 wheelers running around, picking up early arrivals at the parking area and taking them across the flooded field to the tents. (Yes, we took advantage of that ride!) Even the interiors of the tents were soaked, but the quick addition of wood shavings/animal bedding soaked up most of the extra moisture. Jeanne set up her booth, I set up the library booth in a different tent, and we met the day. I intended to stay at my booth, but after one kind woman patted my shoulder and said, "It is a good thing you work at the Med Center - they will fix your voice up", I figured I was not getting the message across about our consumer health information services, and rejoined Jeanne. She and I were both set to be in the style show, so we practiced with everyone that morning, then she went for makeup and hair around noon. (I went back and told them that I was now a 2 year old as far as it came to my hair and face, and I wiggle - they sent me on my way, untouched!)
The style show is where the tears and the mink come in. Even practicing, I teared up - all this being done for us cancer survivors really touched me. (And I admit, there was a little bit of anger back there in a corner of my mind that I was even involved in this - still ticked off that cancer showed up, interfering with my game plans.) All ages were in the style show - I followed a very young boy. No one really got into what their particular story was - we didn't have to. Jeanne spoke just before our turn on the catwalk, telling the do's and don'ts of what to say when a friend has cancer. Then we were on! I went out, and saw my director and her husband cheering me on - and about lost it big time right there. She, along with the great folks I work with, ALWAYS cheered me on, even in the darkest days of treatment and when the pearl showed up in my skull and through additional scans last fall. How lucky can one person be to have that kind of support? I hope everyone finds that when they need it! And to see them out there, cheering once more for me - well, that made my year right there. Wearing the mink was something special - made up for all the hospital gowns I have had on over the past 3 years - but the cheers and smiles from my own supporters and those from the community will keep me going for a long time. Hats off to the nearly 500 volunteers that made the Cattlemen's Ball a reality, and to the community members that attended - my whispering cheers are for you!

Turning to patients for help in the 'war on cancer'

As I have traveled the web since my diagnosis just about 3 years ago, I have learned and heard others say that patients really need to be listened to, and patients with rare conditions should be listened to harder, since they have valuable information to share. I and a professional colleague/dear friend researched expert patient bloggers back in 2007, and found that they have a lot to offer new patients as well as health professionals/researchers, and thus should be considered as information sources by medical librarians. This week, I found a research journal blog post while searching for news on Adenoid Cystic Carcinoma that seems to agree with the idea that patients have much to offer those conducting cancer research, particularly rare cancer research. In HemOnc Today, Bill Wood, MD talks about a recent editorial in the Journal of Clinical Oncology by 2005 Pulitzer Prize winner Amy Dockser Marcus: http://www.hemonctoday.com/comments.aspx?rid=40553. From Dr. Wood's post: "Ms. Marcus argues effectively that the direct involvement of patient advocates in medical research represents a novel and promising mechanism for researching rare diseases." Ms. Marcus included the Adenoid Cystic Carcinoma Research Foundation in her article, a wonderful foundation begun by a family when the mom was diagnosed with ACC: http://www.accrf.org/.
Dr. Wood sees a larger role for patient advocates in ALL cancer research, not just rare cancer. The only question I have is: are we that have the cancer, rare or otherwise, considered patient advocates, or are the two authors talking about inserting another level of humans in the research process between the patients and researchers? (For the purpose of this post, I am assuming that we that wear the scars are the advocates they are discussing.) So the good news for all of you out there that are wondering if the researchers are listening to us, the rare cancer patients - they just might start doing more of it. It appears that my idea of hosting a cruise and inviting researchers to join the hundreds or thousand(s?) of us that are currently on the surface of this blue planet might just be a bit closer to becoming reality... let me know if you are up to helping me plan it!
Here is a link to the original editorial in the Journal of Clinical Oncology: To make progress in rare cancers, patients must lead the way . You should be able to request a copy through your nearest library, or you can purchase it online for $22 from the journal itself.
Amy Dockser Marcus is a Wall Street Journal reporter that has written before on rare cancer issues. Here is a list of articles she wrote in 2004: http://online.wsj.com/public/resources/documents/SB111263120089597221.htm . She received an Investigator Award in Health Policy Research from the Robert Wood Johnson Foundation in 2006, http://www.investigatorawards.org/investigators/default.asp?l=3&i=1898, for "Improving the Cancer Care Experience for Rare Cancer Survivors"