1. A touching story about how the Santaquin (Utah) community has come to the aid of one of their own that is newly diagnosed with ACC: Community Rallies Around Santaquin Mom With Rare Cancer http://www.ksl.com/?nid=148&sid=10987102. Amy Jackson, you are in my thoughts. Thank you for all you do and have done, and kudos to your community for stepping up and letting you know how you have touched their lives.
2. Sad news that the former chair of medicine at Stanford School of Medicine, chair emeritus Edward D. "Ted" Harris Jr., MD, died at the age of 73 on May 21 after fighting with ACC. http://med.stanford.edu/ism/2010/may/obit-harris.html. Dr. Harris' research centered in rheumatology, particularly rheumatoid arthritis. My grateful thanks to his family for asking that memorial contributions to be made also to the Adenoid Cystic Carcinoma Research Foundation - the research done in his name on this cancer may change almost as many lives as his long medical research and education career did.
Monday, May 31, 2010
Sunday, May 30, 2010
Update on the nose situation
I visited an ENT fellow (who is just about finished with his residency, and will be heading out very soon to begin his professional practice) on Friday, and got the lowdown on how my nose is doing (re: sinus rinsing resulted in hours, nearly days later whooshes of water spraying out of my nose). After getting up close and personal with a camera up into my sinuses, he pronounced me fine and dandy in that area of my anatomy. In fact, he said, if he didn't know that I had had radiation to the head, he knew of many people that would like to have sinuses like mine (so now I know that radiation cures sinus problems, and acne - go figure). Evidently, radiation causes the tissue to shrink, so I have caverns up there, compared to some folks that have cramped sinuses. The only bad part - my caverns still have the little bitty openings that most folks have, so the water that goes up there stays until something (never did find the right movements to do it on cue) brings it back down the nose. I figure if I get into the rinsing habit, it may be something I will reserve just for Friday and Saturday night, something like how I used to govern alcohol imbibing (relax - remember, I don't do that anymore). He said that I needed to keep my nose like a dog's - wet. He suggested saline nasal spray, drink lots of fluids, and some sort of ointment (vaseline, bacitracin, whatever), and see if that takes care of things. I thanked him for new coping tools, and danced out of there, glad that he didn't find anything else (well, there was a mention of a crooked septum, but I am not at all seeking elective surgery - had enough of the other sort, thanks.) I also checked with Lucky the Dog when I got home to see what he recommended, but he hasn't gotten back to me yet.
So, back on the straight and narrow, with only a few more hospital bills to pay than I thought there would be before my head/neck MRI in late July before I see the head/neck guys again in August.
So, back on the straight and narrow, with only a few more hospital bills to pay than I thought there would be before my head/neck MRI in late July before I see the head/neck guys again in August.
Tuesday, May 25, 2010
How to manage your death portfolio
from CNBC: How to manage your death portfolio http://www.cnbc.com/id/37088214/.
I like their description of a "family love letter".
I like their description of a "family love letter".
Thursday, May 20, 2010
Another network "Stand up to cancer" planned for this fall
from the NYT: http://www.nytimes.com/2010/05/20/arts/television/20arts-TVNETWORKSPL_BRF.html . Question: does anyone know how much money was raised and what was done with it from the first Stand Up To Cancer in 2008? That would be useful knowledge.
(By the way - not sure if I will be posting to NYT articles in the future - I have heard that they will start charging for their online content. Too bad.)
(By the way - not sure if I will be posting to NYT articles in the future - I have heard that they will start charging for their online content. Too bad.)
Monday, May 17, 2010
Do not read this while eating or preparing to eat
Yeah, I thought that would get your attention. I visited the head/neck guys last Tuesday, asking about the increasing headache, some more tinnitus, and wondering why I have bloody mucus in my nose. No new offering for the headache - heck, for $120,000 (roughly), I should be enjoying the headache all the money brought me. (Joking, of course - sometimes pain means we are alive, and should be grateful.) I should go get a hearing test for the tinnitus. The nose issue caused more attention. They recommended that I use a 'sinus rinse' aka nasal wash (now referred to in our household as nose enema or nasal douche) twice a day for the next month, along with an antibiotic ointment skillfully placed with a cotton swab. When I picked up the ointment from the pharmacy, the pharmacist was careful to tell me to use a new cotton swab for each side of the nose, and to 'just coat the nostril, don't put a lot in, like your mom did with vaporub". I really like directions like those.
Rinsing your sinuses/douching your nasal cavity/giving your nose an enema involves some preparation. I have opted for the home route -mixing my own salt/baking soda solution in distilled water (but I am probably going to move towards the premixed packets very soon.) I fill up a squeeze bottle with the mixture, set the bottle in a glass of warm water to warm it up a bit, then put the bottle tip to one nostril and squeeze gently, feeling the water swirl around in my head before it finally exits out the other nostril like a clear river (oh yeah, did I say I was standing at the sink while all this is going on?). I am up to doing about half the bottle for one side, then stop to blow gently ( bunch of blood clots come out about this time), then I gear up and do the other side with the remainder of the bottle, blowing out the blood clots after the water drips ease up. I tried a neti pot, but simple gravity doesn't seem to get the water up into my nose - it just stayed in the pot - so I went back to the squeeze bottle. The really weird thing - 4 to 8 hours later, water just suddenly spurts out of my nose. Exactly where has it been lurking, that is what I would like to know! Even after doing toe-touches and every other thing I can think of to get my head down and in various directions (within my since-2006 restricted head movements, that is), the water still suddenly appears later. I am going to turn into that little old librarian with a tissue tucked up in her sleeve after all, I can just tell! I figure my coworkers probably just think I have picked up a coke habit...
Let me know if you have advice for a new 'nasal washer', or if you have your own experiences you want to recount here.
Rinsing your sinuses/douching your nasal cavity/giving your nose an enema involves some preparation. I have opted for the home route -mixing my own salt/baking soda solution in distilled water (but I am probably going to move towards the premixed packets very soon.) I fill up a squeeze bottle with the mixture, set the bottle in a glass of warm water to warm it up a bit, then put the bottle tip to one nostril and squeeze gently, feeling the water swirl around in my head before it finally exits out the other nostril like a clear river (oh yeah, did I say I was standing at the sink while all this is going on?). I am up to doing about half the bottle for one side, then stop to blow gently ( bunch of blood clots come out about this time), then I gear up and do the other side with the remainder of the bottle, blowing out the blood clots after the water drips ease up. I tried a neti pot, but simple gravity doesn't seem to get the water up into my nose - it just stayed in the pot - so I went back to the squeeze bottle. The really weird thing - 4 to 8 hours later, water just suddenly spurts out of my nose. Exactly where has it been lurking, that is what I would like to know! Even after doing toe-touches and every other thing I can think of to get my head down and in various directions (within my since-2006 restricted head movements, that is), the water still suddenly appears later. I am going to turn into that little old librarian with a tissue tucked up in her sleeve after all, I can just tell! I figure my coworkers probably just think I have picked up a coke habit...
Let me know if you have advice for a new 'nasal washer', or if you have your own experiences you want to recount here.
Sunday, May 02, 2010
Thanks to BP, the second part of our anniversary has changed
Well folks - who would have known what today's Gulf of Mexico would look like when I booked a condo in Gulf Shores, AL way back in January. We were heading down to take romantic walks on the beach, eat some great Royal Reds (shrimp, HUGE shrimp), and just sit and have the sea breezes waft over us. Not happening. The mister was in a Gulf back in 1991 with burning oil - taking him to an area that has been declared an emergency due to oil again probably wouldn't be the best memory maker for our next 25 years. I figure this is similar to planning a trip to California, and having to cancel it due to forest fires. I am so so very sorry that the wildlife and human life will be experiencing the trouble they are about to (or are already) have thrown at them, but the Cheekymobile won't be driving down to the ocean any time soon. Not sure what we will do instead. I had also hoped this trip would boost me up before my unexpected head/neck doctor visit in mid-May (I know, too much for one small trip to shoulder, anyway), but will face them beach-less.
Where ever you are, I hope your travel plans are holding up and you get to make some memories no matter what. I have the feeling that memories are something we CAN take with us.
Where ever you are, I hope your travel plans are holding up and you get to make some memories no matter what. I have the feeling that memories are something we CAN take with us.
Friday, April 30, 2010
Forgetting cancer by visiting the Woodstock of Capitalism
This weekend is the Berkshire Hathaway stockholders meeting in Omaha, and it is promising to be a fun, informative, and historic time for all. You can follow the activities through the Borsheims jewelry store site: http://www.borsheimsbrk.com/. You might even catch a photo or two of the Cheeky Librarian - I made it into a couple of the photos last year, along with my mom-in-law. If you get the chance, buy some Berkshire Hathaway stock (http://data.cnbc.com/quotes/brka OR http://data.cnbc.com/quotes/brkb) through your TDAmeritrade Roth Account (http://www.tdameritrade.com/welcome1.html), and come to Omaha for the next meeting! You and around 40,000 others won't be sorry.
Tuesday, April 27, 2010
Adenoid Cystic Carcinoma in the news
From Collie, Western Australia(click for map): The Will To Live http://www.colliemail.com.au/news/local/news/general/the-will-to-live/1804062.aspx. This story by Elysia Tilbrook is about Michelle Whitney, a mom who was diagnosed last year with Adenoid Cystic Carcinoma while she was pregnant with her third child. In the story, she says she is being treated with selenium - I found articles in PubMed about research on selenium in the prevention and treatment of certain cancers. Her community had a fund raiser for her back on April 16 to help offset treatment costs. I wish her and her young family the very best as she faces this with the rest of us.
If you or a loved one is newly diagnosed with adenoid cystic carcinoma
I am glad that you found this blog, but sorry that we have to meet under these conditions. There are links on the right side of the blog for more information on ACC, (also known by the acronym AdCC). If you are new to the topic and still under treatment, searching on the internet may not be the best actions you can take at this time, since you need to concentrate on getting healed up and staying strong. Please contact your local library that serves consumer health information, and have them do the searches for you so you will have a focused collection of information to take to your health care professionals the next time you discuss your treatment options and long term outcome expectations. You can locate such a library in your area by going to this link at MedlinePlus: http://www.nlm.nih.gov/medlineplus/libraries.html. Since this is a rare condition, finding out others' experiences may not be the best method for you to plot your own treatment path - in other words, you shouldn't be looking up your own crud on the internet at this time. Really. I used our Consumer Health Information Resource Service (CHIRS), and the librarians gave me the health information I needed at the time I needed it, and saved me from dwelling on individuals' stories, enabling me to concentrate on my own path without distraction. Of course, once I was out of active treatment, you bet that I traveled the web and added my voice to encourage others on this path, and still do so.
If you happen to be facing head/neck radiation, some of my coping strategies are recorded at the beginning of this blog - scroll down the page and you will find the posts.
If you are a cancer survivor (I still haven't found a better term for those of us on the other side of initial treatment), I salute you, and look forward to learning from you.
No matter who you are or how you found this blog, I hope some of the information I have recorded here is useful to you in some fashion.
If you happen to be facing head/neck radiation, some of my coping strategies are recorded at the beginning of this blog - scroll down the page and you will find the posts.
If you are a cancer survivor (I still haven't found a better term for those of us on the other side of initial treatment), I salute you, and look forward to learning from you.
No matter who you are or how you found this blog, I hope some of the information I have recorded here is useful to you in some fashion.
Thursday, April 22, 2010
Celebrated my ten year anniversary at work
Yep, anniversaries of any sort are big with me these days, and the University of Nebraska Medical Center (http://unmc.edu) went out of its way to mark the decade milestones for its faculty this past Tuesday. I noted a cool coincidence in the meeting program - 3 of my cancer-care-related doctors also celebrated their 10th year at UNMC. I want to thank them here, publicly, for their 10 years of service to the University, for their service got me to my own 10 year mark. Wonder what the next 10 years will bring??!
Tuesday, April 13, 2010
Peter Tork will end his Hope On Project on April 30th
Peter Tork - musician extraordinaire, first of the Monkees, and now of the Shoe Suede Blues - and fellow Adenoid Cystic Carcinoma fighter, will be ending his Facebook page "Hope On Project" at the end of this month. Here is the message from his publicist posted at the site:
------------
It's time to say farewell to this wonderful page!
Attention all Peter Pals,
Peter does not wish to continue the Hope On Project at this time, as he is concentrating on other things. So, with that being said, this page will be taken down effective Friday, April 30, 2010.
THANK YOU ALL for helping us to raise awareness and funds for research for rare cancer. We did lots of other wonderful works in Peter's name, too! It's a such a blessing that he has beaten cancer, and we are prayerful that he has a happy and healthy future.
With love,
Dianne
P.S. We will continue the "Rays of Hope" Blanket Project through Elaine's "Blanket The World with Love" fan page.
http://www.facebook.com/#!/pages/Blanket-The-World-With-Love/186034570869?ref=ts
----------------
Boy, the comments from some of the fans of this project are brutal - ripping him for laying down the project once his initial cancer treatment was over. One said, "this site was better last year" [when he was going through treatment and follow-up]. Yep, some readers don't want to hear that cancer patients go back to their lives and livelihood, me thinks. Here's a protein drink raised to you, Mr. Tork, and to all the funds you raised for ACC research - I wish you many years in the future of making money for other causes, including yourself, and raising a ruckus that has NOTHING at all to do with cancer-related topics.
------------
It's time to say farewell to this wonderful page!
Attention all Peter Pals,
Peter does not wish to continue the Hope On Project at this time, as he is concentrating on other things. So, with that being said, this page will be taken down effective Friday, April 30, 2010.
THANK YOU ALL for helping us to raise awareness and funds for research for rare cancer. We did lots of other wonderful works in Peter's name, too! It's a such a blessing that he has beaten cancer, and we are prayerful that he has a happy and healthy future.
With love,
Dianne
P.S. We will continue the "Rays of Hope" Blanket Project through Elaine's "Blanket The World with Love" fan page.
http://www.facebook.com/#!/pages/Blanket-The-World-With-Love/186034570869?ref=ts
----------------
Boy, the comments from some of the fans of this project are brutal - ripping him for laying down the project once his initial cancer treatment was over. One said, "this site was better last year" [when he was going through treatment and follow-up]. Yep, some readers don't want to hear that cancer patients go back to their lives and livelihood, me thinks. Here's a protein drink raised to you, Mr. Tork, and to all the funds you raised for ACC research - I wish you many years in the future of making money for other causes, including yourself, and raising a ruckus that has NOTHING at all to do with cancer-related topics.
Sunday, April 04, 2010
Adenoid Cystic Carcinoma in the news
A few stories out of recent news items on ACC:
Tim Pearson of Glen Innes, New Zealand is in the news again: http://www.stuff.co.nz/national/health/3533253/A-10-year-cancer-battle.
I wrote about Mr. Pearson back in 2008: http://cheekylibrarian.blogspot.com/2008/08/adenoid-cystic-carcinoma-in-news.html. Back then, he was just hoping to get his cable hooked up. I guess he is still having a hard time making ends meet. I would think that New Zealand would take care of their terminally ill citizens a bit better than either story leads one to understand. If anyone out there can explain the New Zealand 'sickness benefit', send me an email. For folks here in the US facing terminal illness, I would suppose that there is disability through Social Security (prepare for a long application process), and one can go into hospice. Hospice is better to go into earlier than later - it is supposed to cover medical bills involved with palliative care, and there isn't a time limit on it, as far as I know.
Here's a cheer to you, Mr. Pearson - wishing you only the best. You are leading the way down the path that many of us will follow after you.
Gregory Jon Lynn of Houston has ACC, and has been treated by the VA: http://www.examiner.com/x-12971-Houston-Legal-Issues-Examiner~y2010m3d20-VA-wont-pay-for-cancerstricken-vets-treatment-yet-illegals-can-get-free-medical-care. The VA has run out of treatment options (not unusual on our type of cancer), and the story says that he was referred to MD Anderson. The problem comes up that the VA refuses to cover costs involved in a clinical trial that MD Anderson is running, and the VA office has in fact said that they have "no intention of referring Mr. Lynn to the MD Anderson trial". Our cancer is a tricky thing, as are clinical trials - a person would have to meet rigorous standards to be accepted into a trial, no matter who was paying for the treatment. I don't know the facts behind the Examiner's story about illegal aliens receiving free medical care and how that applies to this ACC warrior's individual case. I would wager that ANY alien, illegal or not, would still have to meet the strict standards of any clinical trial to receive the treatment protocol. My heartfelt wishes go out to Mr. Lynn's family as they face the brutal facts that ACC brings to all of our lives. As a veteran's wife and former Army wife and civilian, I support our VA system and all it tries to do to care for those that sacrificed so much of their lives for our freedoms. Sometimes cancer wins in the end - that sucks.
Gabriele Anderson, track star of the University of Minnesota Gophers, is in the news for being awarded the Richard "Pinky" McNamara Student-Athlete Achievement Award. http://www.gophersports.com/ViewArticle.dbml?DB_OEM_ID=8400&ATCLID=204919824. You read about Ms. Anderson on this blog about a year ago: http://cheekylibrarian.blogspot.com/2009/05/adenoid-cystic-carcinoma-in-news.html. The award she received is given to a student athlete who has inspired all... Congratulations, Ms. Anderson, on being recognized for your strength in the face of ACC.
Tim Pearson of Glen Innes, New Zealand is in the news again: http://www.stuff.co.nz/national/health/3533253/A-10-year-cancer-battle.
I wrote about Mr. Pearson back in 2008: http://cheekylibrarian.blogspot.com/2008/08/adenoid-cystic-carcinoma-in-news.html. Back then, he was just hoping to get his cable hooked up. I guess he is still having a hard time making ends meet. I would think that New Zealand would take care of their terminally ill citizens a bit better than either story leads one to understand. If anyone out there can explain the New Zealand 'sickness benefit', send me an email. For folks here in the US facing terminal illness, I would suppose that there is disability through Social Security (prepare for a long application process), and one can go into hospice. Hospice is better to go into earlier than later - it is supposed to cover medical bills involved with palliative care, and there isn't a time limit on it, as far as I know.
Here's a cheer to you, Mr. Pearson - wishing you only the best. You are leading the way down the path that many of us will follow after you.
Gregory Jon Lynn of Houston has ACC, and has been treated by the VA: http://www.examiner.com/x-12971-Houston-Legal-Issues-Examiner~y2010m3d20-VA-wont-pay-for-cancerstricken-vets-treatment-yet-illegals-can-get-free-medical-care. The VA has run out of treatment options (not unusual on our type of cancer), and the story says that he was referred to MD Anderson. The problem comes up that the VA refuses to cover costs involved in a clinical trial that MD Anderson is running, and the VA office has in fact said that they have "no intention of referring Mr. Lynn to the MD Anderson trial". Our cancer is a tricky thing, as are clinical trials - a person would have to meet rigorous standards to be accepted into a trial, no matter who was paying for the treatment. I don't know the facts behind the Examiner's story about illegal aliens receiving free medical care and how that applies to this ACC warrior's individual case. I would wager that ANY alien, illegal or not, would still have to meet the strict standards of any clinical trial to receive the treatment protocol. My heartfelt wishes go out to Mr. Lynn's family as they face the brutal facts that ACC brings to all of our lives. As a veteran's wife and former Army wife and civilian, I support our VA system and all it tries to do to care for those that sacrificed so much of their lives for our freedoms. Sometimes cancer wins in the end - that sucks.
Gabriele Anderson, track star of the University of Minnesota Gophers, is in the news for being awarded the Richard "Pinky" McNamara Student-Athlete Achievement Award. http://www.gophersports.com/ViewArticle.dbml?DB_OEM_ID=8400&ATCLID=204919824. You read about Ms. Anderson on this blog about a year ago: http://cheekylibrarian.blogspot.com/2009/05/adenoid-cystic-carcinoma-in-news.html. The award she received is given to a student athlete who has inspired all... Congratulations, Ms. Anderson, on being recognized for your strength in the face of ACC.
Thursday, April 01, 2010
Google is now Topeka
Thought you would enjoy this post I discovered:
http://googleblog.blogspot.com/2010/04/different-kind-of-company-name.html. May your day be full of fun and no fools.
http://googleblog.blogspot.com/2010/04/different-kind-of-company-name.html. May your day be full of fun and no fools.
Wednesday, March 31, 2010
Discovered a bit of my own past
I am officially listed as a "missing classmate" on my high school class reunion site - something I find extremely funny and take as a high honor, since the mister and I both graduated from the same school, on the same day, and we have traveled back to the home town about 3x a year for the past 30 years. At the risk of being discovered, here is a link to the folks I shared my last year of high school with in Missouri: http://www.smithcotton79.com/Yearbook.htm. Some are gone now; some are just 'missing', like me; but many of them showed up for the 30th reunion in October and evidently had a roaring good time. I think it is safe to say that each of the faces in the yearbook has made a difference in this world in one way or another, though, and that was all we hoped to do when we graduated. I know that each of them made a difference in my life, and I am glad to have had the chance to share high school halls with them. For the few that I have kept in contact with, YOU know that you are key to me being the person I have become.
Here's to the current crop of youngsters doing the same. And advice to them as they giggle at these photos from 1979 - yes, you too will look different when you reach your 30th reunion...trust me!
Here's to the current crop of youngsters doing the same. And advice to them as they giggle at these photos from 1979 - yes, you too will look different when you reach your 30th reunion...trust me!
Friday, March 26, 2010
Considering how to deal with the lifetime of stuff?
If you are one of the many adult children out there, you may be considering what will happen when it comes time to handle your parents' possessions as they get older or die. I heard of a book the other day that offers some guidance on this topic:
The Boomer Burden: dealing with your parents' lifetime accumulation of stuff, by Julie Hall. You can check to see if it is in your local library at this WorldCat link:
http://www.worldcat.org/title/boomer-burden-dealing-with-your-parents-lifetime-accumulation-of-stuff/oclc/185033318&referer=brief_results
Here is a description of the book from its Amazon link - you can check customer reviews on that page as well:
"A practical guide to advise Baby Boomers how to deal with the daunting task of facing a parents' eventual passing as it relates to residential contents, heirlooms, and the often difficult family interactions and feuds that accompany them.
With fascinating stories and comprehensive checklists, professional estate liquidator Julie Hall walks Baby Boomers through the often painful challenge of dividing the wealth and property of their parents' lifetime accumulation of stuff. From preparation while the parent is still living through compassionately helping them empty the family home, The Estate Lady® gives invaluable tips on negotiating the inevitable disputes, avoiding exploitation from scam artists, and eventually closing the chapter of their lives in a way that preserves relationships and maximizes value of assets."
If you have the chance to bring in speakers for your next cancer support group or conference, you might consider asking Ms. Hall to present - here is her web link:
http://www.theestatelady.com/about_julie_hall.html.
I have friends that are facing difficult situations with splitting up their parents' possessions with siblings, and I would like to lessen the burden for others. This book might be the conversation starter you have been looking for. Face it - we WILL be going through this, either for our own stuff, or our parents, so let's try to make it easier on each other.
The Boomer Burden: dealing with your parents' lifetime accumulation of stuff, by Julie Hall. You can check to see if it is in your local library at this WorldCat link:
http://www.worldcat.org/title/boomer-burden-dealing-with-your-parents-lifetime-accumulation-of-stuff/oclc/185033318&referer=brief_results
Here is a description of the book from its Amazon link - you can check customer reviews on that page as well:
"A practical guide to advise Baby Boomers how to deal with the daunting task of facing a parents' eventual passing as it relates to residential contents, heirlooms, and the often difficult family interactions and feuds that accompany them.
With fascinating stories and comprehensive checklists, professional estate liquidator Julie Hall walks Baby Boomers through the often painful challenge of dividing the wealth and property of their parents' lifetime accumulation of stuff. From preparation while the parent is still living through compassionately helping them empty the family home, The Estate Lady® gives invaluable tips on negotiating the inevitable disputes, avoiding exploitation from scam artists, and eventually closing the chapter of their lives in a way that preserves relationships and maximizes value of assets."
If you have the chance to bring in speakers for your next cancer support group or conference, you might consider asking Ms. Hall to present - here is her web link:
http://www.theestatelady.com/about_julie_hall.html.
I have friends that are facing difficult situations with splitting up their parents' possessions with siblings, and I would like to lessen the burden for others. This book might be the conversation starter you have been looking for. Face it - we WILL be going through this, either for our own stuff, or our parents, so let's try to make it easier on each other.
Monday, March 22, 2010
May we all have an obituary like this when we leave
Margaret Moth, photojournalist for CNN, died today of colon cancer. Her story is on the CNN site: Fearless to the end: Remembering Margaret Moth
http://www.cnn.com/2010/LIVING/03/21/margaret.moth.obit/index.html
A quote from Christiane Amanpour says it all:
She "led the complete life," Amanpour said. "I don't think Margaret could ever look back and say, 'What if?' She did it to the max, and she did it brilliantly. And she did it on her terms."
Here's wishing that we all do that - live our lives to the max, on our own terms.
http://www.cnn.com/2010/LIVING/03/21/margaret.moth.obit/index.html
A quote from Christiane Amanpour says it all:
She "led the complete life," Amanpour said. "I don't think Margaret could ever look back and say, 'What if?' She did it to the max, and she did it brilliantly. And she did it on her terms."
Here's wishing that we all do that - live our lives to the max, on our own terms.
Wednesday, March 17, 2010
If you are or want to be a writer...
My university had a workshop for academic writers today, and I thought the book list might be of interest to you if you are considering writing about your life experiences. Dr. Paul Silvia of the University of North Carolina suggested the titles, and I collected them in this refshare folder: http://www.refworks.com/refshare/?site=037501144987200000/RWWS2AA638028/031610WriteRightNowBookReferences. (I added Dr. Silvia's book to the list.)
You can take the citation information for the books you would like to your local library's website, and see if they have them listed in their catalog. If they don't, you can request them via interlibrary loan - check with your library on this service, and find out if there are fees involved.
Your story is important. Just do it. (With a nod to Nike.)
You can take the citation information for the books you would like to your local library's website, and see if they have them listed in their catalog. If they don't, you can request them via interlibrary loan - check with your library on this service, and find out if there are fees involved.
Your story is important. Just do it. (With a nod to Nike.)
Thursday, March 11, 2010
FDA and the Orphan Drug Act
Story mentions Adenoid Cystic Carcinoma in the March 10th Wall Street Journal: Push to Cure Rare Diseases
http://online.wsj.com/article/SB10001424052748704145904575111943356541152.html?mod=WSJ_latestheadlines
Says the Orphan Drug Act provides incentives for drug companies to work towards treating orphan diseases. Glad to hear there is movement, but I was saddened to be reminded that I (and many others) wear what is termed an "orphan disease". Here's to drug companies going for the tax breaks and developing that therapy for this thing. I know too many people that are in their second or third time of fighting ACC, and they really need a break.
http://online.wsj.com/article/SB10001424052748704145904575111943356541152.html?mod=WSJ_latestheadlines
Says the Orphan Drug Act provides incentives for drug companies to work towards treating orphan diseases. Glad to hear there is movement, but I was saddened to be reminded that I (and many others) wear what is termed an "orphan disease". Here's to drug companies going for the tax breaks and developing that therapy for this thing. I know too many people that are in their second or third time of fighting ACC, and they really need a break.
Tuesday, March 02, 2010
Very last post as a something-something year old Cheeky Librarian
Yes folks, I get to celebrate another birthday tomorrow. Woot! We actually did a pretty good job of it last night and today: dear son took us all out to the HuHot Mongolian Grill where I had grilled veggies until I was stuffed; today dear husband and I had a 'married persons date' by going to the dentist together, then took our shiny white teeth to Red Lobster and had an early dinner (complete with free cheesecake since I was the birthday girl), and a side trip to Dress Barn to see what clothes they have come up with for Spring. All in all, very good times, and I feel very spoiled.
Checking out the clothes at Dress Barn reminded me that I need to get some more sun protection clothes for this summer, as I hope that I will be able to be out in it even more than last year. Coolibar http://coolibar.com/ sent me an email notice that they have a sale going on, in case you also need sun protection. I think a trip to the beach is in my future, so I have been checking out the swimwear http://www.coolibar.com/women-s-swimwear.html.
Checking out the clothes at Dress Barn reminded me that I need to get some more sun protection clothes for this summer, as I hope that I will be able to be out in it even more than last year. Coolibar http://coolibar.com/ sent me an email notice that they have a sale going on, in case you also need sun protection. I think a trip to the beach is in my future, so I have been checking out the swimwear http://www.coolibar.com/women-s-swimwear.html.
You can save sperm, eggs, and now - your voice?!
Back in 2009, Roger Ebert put on his blog his frustration at not being able to talk to get his message across (I found the blog entry at the time while experiencing my own lack of voice): Finding My Own Voice http://blogs.suntimes.com/ebert/2009/08/finding_my_own_voice.html. In the post, he described finding a company, CereProc (http://www.cereproc.com/), that seemed to offer a solution to his problem.
My mom told me that Roger Ebert went on Oprah today and talked, using this technology. How cool is that?! They were able to recreate his voice to speak the words he typed, thanks to the hours of recordings he had made as a film reviewer over the years. More information on the Oprah episode with a video link are here at the Washington Post: http://www.washingtonpost.com/wp-dyn/content/article/2010/03/02/AR2010030202326.html.
Not many of us would have such a voice reference library if we lost our voices suddenly due to accident or disease. Maybe, just maybe, if one knew that losing their ability to speak is a distinct possibility, one could contact CereProc and 'store' a recording to be used later if speech disappeared. I don't know if CereProc has such a 'voice bank', but after last summer, I will probably be contacting them to see if I could be their guinea pig. If I ever lose my voice again, I want to be able to tell someone someday to kiss my left hind leg with all the inflection and emotion I had when I could speak...
My mom told me that Roger Ebert went on Oprah today and talked, using this technology. How cool is that?! They were able to recreate his voice to speak the words he typed, thanks to the hours of recordings he had made as a film reviewer over the years. More information on the Oprah episode with a video link are here at the Washington Post: http://www.washingtonpost.com/wp-dyn/content/article/2010/03/02/AR2010030202326.html.
Not many of us would have such a voice reference library if we lost our voices suddenly due to accident or disease. Maybe, just maybe, if one knew that losing their ability to speak is a distinct possibility, one could contact CereProc and 'store' a recording to be used later if speech disappeared. I don't know if CereProc has such a 'voice bank', but after last summer, I will probably be contacting them to see if I could be their guinea pig. If I ever lose my voice again, I want to be able to tell someone someday to kiss my left hind leg with all the inflection and emotion I had when I could speak...
Visit to the dentist
If you have had radiation to your head, or a parotidectomy (both of which can lessen your spit production) you REALLY need to stay friends with your dentist. The goal for me is to NOT have any teeth pulled from now until death, and I am proud to say that I have met that goal. However, while there is no decay to my choppers (flouride soaking trays, Biotene toothpaste, staying away from starchy/sugary foods as much as possible), I still have the teeth I walked into cancer-land with, and some of them have structural issues. One is about to be crowned (oh goody), but I know that will result in a better outcome than waiting around for the thing to break. On the good side, my dry mouth (xerostomia) seems to be getting better - the hygienist commented on my spit production while cleaning the teeth. I am nearly 3 years out from surgery and radiation, so maybe some of the tougher side effects are lessening.
Information links on cancer and how dentists can be of help to you if you are facing treatment now or have had it in the past:
Oral Cancer page at the American Dental Association: http://www.ada.org/public/topics/cancer_oral.asp (Note: my Adenoid Cystic Carcinoma wasn't technically 'oral cancer', but my dentist did see the signs of it way before any other doctor would have listened. Thanks to my dentist, I sought treatment earlier.)
Three Good Reasons to See a Dentist BEFORE Cancer Treatment, from the National Institute of Dental and Craniofacial Research: http://www.nidcr.nih.gov/OralHealth/Topics/CancerTreatment/ThreeGoodReasons.htm
Xerostomia information for dentists, from the Oral Cancer Foundation (share with your dentist): http://www.oralcancerfoundation.org/dental/xerostomia.htm
Information links on cancer and how dentists can be of help to you if you are facing treatment now or have had it in the past:
Oral Cancer page at the American Dental Association: http://www.ada.org/public/topics/cancer_oral.asp (Note: my Adenoid Cystic Carcinoma wasn't technically 'oral cancer', but my dentist did see the signs of it way before any other doctor would have listened. Thanks to my dentist, I sought treatment earlier.)
Three Good Reasons to See a Dentist BEFORE Cancer Treatment, from the National Institute of Dental and Craniofacial Research: http://www.nidcr.nih.gov/OralHealth/Topics/CancerTreatment/ThreeGoodReasons.htm
Xerostomia information for dentists, from the Oral Cancer Foundation (share with your dentist): http://www.oralcancerfoundation.org/dental/xerostomia.htm
Saturday, February 20, 2010
Those noisy MRI scans may be replaced by blood tests soon
If you too have head/neck cancer, you know the MRI scans I am referring to - inside the noisy tube, listening to the magnets dance while the experts run the scan to see if you have a recurrence. I think at one point I was getting those about every 6 months (seems they found some interesting things to keep watching in my head, despite what my little brother used to tease me about when we were younger). Now, scientists say that watching for cancer may only take a blood test after the initial tumor's genetic signature has been identified. As reported in Reuters [http://www.reuters.com/article/idUSTRE61H5QR20100218], they used this new process to identify cancer remaining in colorectal cancer patients long before anything would have shown up on an imaging scan. They say the procedure is costly now (hey, I would pay 5 grand gladly to see if anything is floating around), but should be less than an MRI in the future. So far, they have only tested breast and colorectal cancer. I am not sure if Adenoid Cystic Carcinoma would be a good cancer for this test, since it travels the nerves more than in the blood, but we can hope. Now, where did I put that 2006 tumor...
Friday, February 19, 2010
The thrill of social media has brought me out of the frozen silence
It has been a winter around here that would chase polar bears away. The cold and dark have seeped into everything, including my blogging gene, hence the long silence. (Just letting you know that the only big C that I am currently dealing with, as far as I know, is the cold, not cancer.) What finally brought me back to the keyboard was a visit today to a University of Omaha marketing class, where I heard a great speaker: Bryan Jennewein (Director of Social Media at Infogroup). His tips would work for any cancer patients and their families who are considering integrating social media to spread the word about their condition, treatment, and recovery. Some no
tes that I took:-use all privacy settings available on social media such as Facebook. If you want only your selected family and friends to read about your cancer experiences, limit the access. If you are doing a fund raiser, maybe you want a new page to announce the event(s), rather than open up your main Facebook page to strangers.
-if you wish to find out your standing in the blog community, you can check it out at Technorati [http://technorati.com], but you will probably have to make a claim on it first through your account. You can also check to see how your blog shows up by searching through Google Blogs, like this one I did for mine: [http://blogsearch.google.com/blogsearch?hl=en&ie=UTF-8&q=cheeky+librarian&btnG=Search+Blogs].
-get others to link to your social media account, if you are trying to get the word out.
-involve your readers by asking for comments (I live by them, folks! It gets lonely out here.), and even holding contests if you can.
We truly aren't alone, but it takes a bit of work to stay connected using every bit of technology available. Thanks for hanging in there while I have been silent - I feel a thaw coming on! Stay tuned...and now, I will leave you with a photo from warmer weather.
Thursday, January 28, 2010
A mom with a child newly diagnosed with ACC needs your support
Sara posted a comment on one of my recent messages, and I include it here in case you missed it:
I just started a blog for myself. My son was diagnosed with ACC this week. I am struggling with sleeping and eating. I dont know what to do. We are waiting to hear from the doctor my son was assigned to at St. Jude, hopefully tomorrow. I would love to hear from anyone that knows about ACC or someone that wants to vent with me. We have a Caring Bridge site.
http://www.caringbridge.org/visit/jacobcooksey
Thank you for listening.
http://jacobsmommie.blogspot.com/
Sara
Cheekylibrarian, here - if you have any words of support for this mom, her email address is on the caring bridge blog, or you can leave comments on the blogspot blog. Please let her know she isn't alone. If you happen to be someone that survived having ACC as a kid, or have been the caregiver for a young person with ACC, I know you have unique information that you can share with her. Sending you the best, Sara - you are not alone in this.
PS - (added 2/5/10) Jacob's aunt also has a blog, and posted it in the comments to this message - bringing it up to the front for you:
http://teamjacobacc.blogspot.com
I just started a blog for myself. My son was diagnosed with ACC this week. I am struggling with sleeping and eating. I dont know what to do. We are waiting to hear from the doctor my son was assigned to at St. Jude, hopefully tomorrow. I would love to hear from anyone that knows about ACC or someone that wants to vent with me. We have a Caring Bridge site.
http://www.caringbridge.org/
Thank you for listening.
http://jacobsmommie.blogspot.
Sara
Cheekylibrarian, here - if you have any words of support for this mom, her email address is on the caring bridge blog, or you can leave comments on the blogspot blog. Please let her know she isn't alone. If you happen to be someone that survived having ACC as a kid, or have been the caregiver for a young person with ACC, I know you have unique information that you can share with her. Sending you the best, Sara - you are not alone in this.
PS - (added 2/5/10) Jacob's aunt also has a blog, and posted it in the comments to this message - bringing it up to the front for you:
http://teamjacobacc.blogspot.com
Adenoid Cystic Carcinoma in the news
A story from Bluefield, West Virginia about Lisa Poole, who was diagnosed with ACC in 2004:
Battle of a lifetime: Poole says don't give up after cancer diagnosis
http://www.bdtonline.com/local/local_story_024222827.html
Lisa knows personally how cancer can wreck your life - her ACC has returned, despite the inital radical surgery that (if I read the story correctly) removed her ability to speak. I really like her advice: "Scream, shout, then calm down, take a deep breath, and prepare for the battle of your life."
Lisa, keep urging others along, and I will cheer you on from here. We are in the battle together.
Battle of a lifetime: Poole says don't give up after cancer diagnosis
http://www.bdtonline.com/local/local_story_024222827.html
Lisa knows personally how cancer can wreck your life - her ACC has returned, despite the inital radical surgery that (if I read the story correctly) removed her ability to speak. I really like her advice: "Scream, shout, then calm down, take a deep breath, and prepare for the battle of your life."
Lisa, keep urging others along, and I will cheer you on from here. We are in the battle together.
If you or a loved one is newly diagnosed with adenoid cystic carcinoma
I am glad that you found this blog, but sorry that we have to meet under these conditions. There are links on the right side of the blog for more information on ACC, (also known by the acronym AdCC). If you are new to the topic and still under treatment, searching on the internet may not be the best actions you can take at this time, since you need to concentrate on getting healed up and staying strong. Please contact your local library that serves consumer health information, and have them do the searches for you so you will have a focused collection of information to take to your health care professionals the next time you discuss your treatment options and long term outcome expectations. You can locate such a library in your area by going to this link at MedlinePlus: http://www.nlm.nih.gov/medlineplus/libraries.html. Since this is a rare condition, finding out others' experiences may not be the best method for you to plot your own treatment path - in other words, you shouldn't be looking up your own crud on the internet at this time. Really. I used our Consumer Health Information Resource Service (CHIRS), and the librarians gave me the health information I needed at the time I needed it, and saved me from dwelling on individuals' stories, enabling me to concentrate on my own path without distraction. Of course, once I was out of active treatment, you bet that I traveled the web and added my voice to encourage others on this path, and still do so.
If you happen to be facing head/neck radiation, some of my coping strategies are recorded at the beginning of this blog - scroll down the page and you will find the posts.
If you are a cancer survivor (I still haven't found a better term for those of us on the other side of initial treatment), I salute you, and look forward to learning from you.
No matter who you are or how you found this blog, I hope some of the information I have recorded here is useful to you in some fashion.
If you happen to be facing head/neck radiation, some of my coping strategies are recorded at the beginning of this blog - scroll down the page and you will find the posts.
If you are a cancer survivor (I still haven't found a better term for those of us on the other side of initial treatment), I salute you, and look forward to learning from you.
No matter who you are or how you found this blog, I hope some of the information I have recorded here is useful to you in some fashion.
Saturday, January 23, 2010
Adenoid Cystic Carcinoma in the news
Cancer is wicked. Having been diagnosed with cancer, I have kept hope that maybe I will be the only one in my family to have to go through this stuff, but that may not be the case. I now know of two moms that are not only battling their own cancer, but also that of their children.
Unfortunately, there are probably many more, but I found these amazing women by looking up ACC in the news.
The latest is Julie Duttine, and her son Jaden. If you are anywhere near South Hills (Pleasant Hills, PA, I think) on February 13th, please get some tickets for the show "'Til Death Do Us Part", the latest in the Late Night Catechism national shows. I think the take on both the matinee and the evening performances will go to the Duttines to TRY to offset the cancer treatment costs. Here is a link to the pdf of the order form, and here is a link to more on the Duttines, halfway down the page under "Catch the catechism". Julie also writes a blog, and posts updates on Jaden here: http://supahmommy.blogspot.com/search/label/jaden%20duttine . I will add her blog to the blog roll on the right side of this page. I wish for them standing room only crowds.
The other momma that is dealing with not only her ACC but her child's cancer is Sherry Rogers http://www.caringbridge.org/visit/sherryrogers. The great news on her blog is that her son's and her latest scans are looking good! Thank goodness, and I wish for them all a very boring and love-filled spring ahead.
Unfortunately, there are probably many more, but I found these amazing women by looking up ACC in the news.
The latest is Julie Duttine, and her son Jaden. If you are anywhere near South Hills (Pleasant Hills, PA, I think) on February 13th, please get some tickets for the show "'Til Death Do Us Part", the latest in the Late Night Catechism national shows. I think the take on both the matinee and the evening performances will go to the Duttines to TRY to offset the cancer treatment costs. Here is a link to the pdf of the order form, and here is a link to more on the Duttines, halfway down the page under "Catch the catechism". Julie also writes a blog, and posts updates on Jaden here: http://supahmommy.blogspot.com/search/label/jaden%20duttine . I will add her blog to the blog roll on the right side of this page. I wish for them standing room only crowds.
The other momma that is dealing with not only her ACC but her child's cancer is Sherry Rogers http://www.caringbridge.org/visit/sherryrogers. The great news on her blog is that her son's and her latest scans are looking good! Thank goodness, and I wish for them all a very boring and love-filled spring ahead.
Friday, January 15, 2010
A visit to the dietitian
I met with the dietitian that is a partner in my family medicine clinic, and got re-schooled on what a nutritional diet for a non-tasting person should look like. The dietitian took the food preferences I currently have (which are pretty good, overall) and put them into a food exchange set-up, so I can keep better track of what I am ingesting. I have also started recording what I eat on FitDay, a free online food diary site: http://fitday.com/. None of this is earth-shattering - I just needed to be reminded to increase my protein intake (had stopped doing the protein shakes before the holidays, and my energy level has suffered) and that even vegetables have calories (what?!? how rude!), and one cannot make a meal of nuts and berries every day without compensating for lower calorie options along the way. As I told a friend, even cows get fat on grass...
Friday, January 08, 2010
Sun dogs and Nebraska weather stats
Since most of our days are being taken up by the weather in some form here in Nebraska, I thought you might be interested in some trivia. It isn't supposed to get even to zero degrees F today, but that isn't the coldest maximum on record at this site:
http://www.crh.noaa.gov/oax/?n=climate-extremes
I also thought you would like to see the sun dogs that escorted us home last night.
Thursday, January 07, 2010
This guy writes what I feel about having no taste
Roger Ebert blogs about his inability to eat, and what he really misses about it:
Nil by mouth http://blogs.suntimes.com/ebert/2010/01/nil_by_mouth.html
I started crying when I got to this part, because it is what I miss the most, too:
"What I miss is the society. Lunch and dinner are the two occasions when we most easily meet with friends and family. They're the first way we experience places far from home. Where we sit to regard the passing parade. How we learn indirectly of other cultures. When we feel good together. Meals are when we get a lot of our talking done -- probably most of our recreational talking. That's what I miss."
I attended one business dinner last summer when I couldn't speak as well as not eat - I won't ever do that again if I can help it.
Nil by mouth http://blogs.suntimes.com/ebert/2010/01/nil_by_mouth.html
I started crying when I got to this part, because it is what I miss the most, too:
"What I miss is the society. Lunch and dinner are the two occasions when we most easily meet with friends and family. They're the first way we experience places far from home. Where we sit to regard the passing parade. How we learn indirectly of other cultures. When we feel good together. Meals are when we get a lot of our talking done -- probably most of our recreational talking. That's what I miss."
I attended one business dinner last summer when I couldn't speak as well as not eat - I won't ever do that again if I can help it.
Heard about the Special K Challenge? Be on the show!
Saw this call, and thought someone out there between the ages of 25 and 40 might be interested:
http://thevictoryproject.msn.com/BeOnTheShow.aspx
http://thevictoryproject.msn.com/BeOnTheShow.aspx
Monday, January 04, 2010
Welcoming 2010 with memory problems
Can't blame it on too much holiday cheer - no alcohol for quite a while. I refuse to go to "oh no, a brain tumor" - other biological things are in play that act on memory. Such as:
1. My thyroid has been low, it turns out, so my primary care doc is working to get me level again. Thyroid disease acts on memory.
2. Stress acts on memory, and we have been experiencing some run-of-the-mill type of stress that follows both adult kids living at home and all of us held captive by sub-zero temps.
3. I am of a certain age - pushing 50 doesn't mean I am elderly (unless I was born near the turn of the 20th century), but the brain has gone through a lot.
4. Disturbed sleep patterns act on memory - due to any of the above, my sleep has been poor over the past couple of months.
I feel like I am in a constant state of deja vu, feeling that I have already done something that sounds like a good thing to do or something that I need to get done by a certain time (bill paying, sending birthday cards, emailing thanks to someone for the difference they have made in my life), when I am probably experiencing the echo of the original thought. To cope, I have lists (and I am NOT a list person), with dates/times/other clues showing that I have done the deed that I need to do. The alternatives are that either the thing doesn't get done, since my swiss cheese brain thinks I have already done it (pretty bad that I can't trust my brain these days), or I do it twice (making my semi-duplicate initial messages to an old friend Facebook seem like a stalker, or resulting in co-workers getting multiple happy birthday wishes, which is happening to those born in January). Let's just say that I won't be applying for Jeopardy any time soon. And I rein in any comments or offering of facts when in groups - not sure if a) it has been said already, and/or b)I have the correct fact in hand. Since my professional day is spent verifying facts, my job performance is doing ok (as long as I follow the lists), but I couldn't play Trivial Pursuit right now if a set of synthetic taste-buds was the prize. The thing I noticed today was that I couldn't record entire telephone numbers - had to look up and record 18 of them for a handout I created. I could go back and forth and type in the number on the handout 3 or 4 digits at a time - not the entire 10 in one whack. (Cut and paste was not an option this time-just short term memory.)
The spouse suffers in this, too. I ask him multiple times about something coming up or what he might want for lunch, say, and he gets to thinking that I am a huge nag. Or I don't communicate with him at all about something that blows up later. Lucky for me, he is pretty patient. As for Lucky the dog, during this cold weather I stand at the open door to make sure I get him back inside when he is done with his abolutions - I can't risk leaving him forgotten on the porch in these temperatures.
(added 1/7/10) Thanks for all the comments - you all are great! Maybe my problems really stem from the central air handling unit that resides over my office: http://www.scientificamerican.com/article.cfm?id=ask-the-brains-background-noise .
1. My thyroid has been low, it turns out, so my primary care doc is working to get me level again. Thyroid disease acts on memory.
2. Stress acts on memory, and we have been experiencing some run-of-the-mill type of stress that follows both adult kids living at home and all of us held captive by sub-zero temps.
3. I am of a certain age - pushing 50 doesn't mean I am elderly (unless I was born near the turn of the 20th century), but the brain has gone through a lot.
4. Disturbed sleep patterns act on memory - due to any of the above, my sleep has been poor over the past couple of months.
I feel like I am in a constant state of deja vu, feeling that I have already done something that sounds like a good thing to do or something that I need to get done by a certain time (bill paying, sending birthday cards, emailing thanks to someone for the difference they have made in my life), when I am probably experiencing the echo of the original thought. To cope, I have lists (and I am NOT a list person), with dates/times/other clues showing that I have done the deed that I need to do. The alternatives are that either the thing doesn't get done, since my swiss cheese brain thinks I have already done it (pretty bad that I can't trust my brain these days), or I do it twice (making my semi-duplicate initial messages to an old friend Facebook seem like a stalker, or resulting in co-workers getting multiple happy birthday wishes, which is happening to those born in January). Let's just say that I won't be applying for Jeopardy any time soon. And I rein in any comments or offering of facts when in groups - not sure if a) it has been said already, and/or b)I have the correct fact in hand. Since my professional day is spent verifying facts, my job performance is doing ok (as long as I follow the lists), but I couldn't play Trivial Pursuit right now if a set of synthetic taste-buds was the prize. The thing I noticed today was that I couldn't record entire telephone numbers - had to look up and record 18 of them for a handout I created. I could go back and forth and type in the number on the handout 3 or 4 digits at a time - not the entire 10 in one whack. (Cut and paste was not an option this time-just short term memory.)
The spouse suffers in this, too. I ask him multiple times about something coming up or what he might want for lunch, say, and he gets to thinking that I am a huge nag. Or I don't communicate with him at all about something that blows up later. Lucky for me, he is pretty patient. As for Lucky the dog, during this cold weather I stand at the open door to make sure I get him back inside when he is done with his abolutions - I can't risk leaving him forgotten on the porch in these temperatures.
(added 1/7/10) Thanks for all the comments - you all are great! Maybe my problems really stem from the central air handling unit that resides over my office: http://www.scientificamerican.com/article.cfm?id=ask-the-brains-background-noise .
Thursday, December 31, 2009
Adenoid Cystic Carcinoma in the news
1. "Tricia's Tree" raises money for cancer research
http://www.southtownstar.com/news/1958278,122509triciastree.article
The SouthtownStar reports about a fundraiser conducted at the First Midwest Bank in Crestwood (Il) by the husband of Patricia Mason. Mrs. Mason passed away earlier this year from ACC. Folks that donated money to the American Cancer Society at the bank could place a purple ornament on the tree, with purple being Mrs. Mason's signature color. My condolences to Mr. Mason and his daughter for their loss of such a cool lady, and I congratulate them on such a great way to mark her memory for others to follow.
2. Another link that I found shouldn't have been where I found it. It is evidently a copy of a letter written to an insurance company, complete with great journal references, about benefits of using proton radiation on ACC. I think it is from the discussion list of ACCOI, based on the title of the header, but not sure how it got posted on the blog where I found it (if I had seen it on the discussion list only, I wouldn't post it here - very bad etiquette. Posting it since I found it "in the wild".): "Re: [ACCOI] references and research articles regarding dosage amounts http://dzone4alternativemedicine.blogspot.com/2009/12/re-accoi-references-and-research.html .
If you want to get copies of the journal articles mentioned, please call/go to the nearest library listed in this directory: http://www.nlm.nih.gov/medlineplus/libraries.html , and ask how about their services for consumer health information. Usually, if the journal is held in the library, you can go and make a copy for yourself, but if it has to be requested from another library, there may be a fee involved (please consider it a dry-cleaning fee, and just cover it to get access to the full-text).
Here are links and email addresses for the ACCOI website and discussion board, if you wish to join:
ACCOI website: http://www.accoi.org
Post message: Adenoid_Cystic_Carcinoma_Organization@yahoogroups.com
Subscribe: Adenoid_Cystic_Carcinoma_Organization-subscribe@yahoogroups.com
Unsubscribe: Adenoid_Cystic_Carcinoma_Organization-unsubscribe@yahoogroups.com
List owner: Adenoid_Cystic_Carcinoma_Organization-owner@yahoogroups.com
http://www.southtownstar.com/news/1958278,122509triciastree.article
The SouthtownStar reports about a fundraiser conducted at the First Midwest Bank in Crestwood (Il) by the husband of Patricia Mason. Mrs. Mason passed away earlier this year from ACC. Folks that donated money to the American Cancer Society at the bank could place a purple ornament on the tree, with purple being Mrs. Mason's signature color. My condolences to Mr. Mason and his daughter for their loss of such a cool lady, and I congratulate them on such a great way to mark her memory for others to follow.
2. Another link that I found shouldn't have been where I found it. It is evidently a copy of a letter written to an insurance company, complete with great journal references, about benefits of using proton radiation on ACC. I think it is from the discussion list of ACCOI, based on the title of the header, but not sure how it got posted on the blog where I found it (if I had seen it on the discussion list only, I wouldn't post it here - very bad etiquette. Posting it since I found it "in the wild".): "Re: [ACCOI] references and research articles regarding dosage amounts http://dzone4alternativemedicine.blogspot.com/2009/12/re-accoi-references-and-research.html .
If you want to get copies of the journal articles mentioned, please call/go to the nearest library listed in this directory: http://www.nlm.nih.gov/medlineplus/libraries.html , and ask how about their services for consumer health information. Usually, if the journal is held in the library, you can go and make a copy for yourself, but if it has to be requested from another library, there may be a fee involved (please consider it a dry-cleaning fee, and just cover it to get access to the full-text).
Here are links and email addresses for the ACCOI website and discussion board, if you wish to join:
ACCOI website: http://www.accoi.org
Post message: Adenoid_Cystic_Carcinoma_Organization@yahoogroups.com
Subscribe: Adenoid_Cystic_Carcinoma_Organization-subscribe@yahoogroups.com
Unsubscribe: Adenoid_Cystic_Carcinoma_Organization-unsubscribe@yahoogroups.com
List owner: Adenoid_Cystic_Carcinoma_Organization-owner@yahoogroups.com
Thursday, December 24, 2009
Hello from the Blizzard of 2009
We are supposed to get 14 inches of snow or more by the time the storm ends Saturday night, but right now, about 10 inches of it is tearing through the air at 40 mph. Lucky the dog was outside at midnight, answering the call of nature - if it is true that animals speak at midnight on Christmas, I didn't hear what he said over the wind (probably better that I didn't, though). Half the household has to work tomorrow - Walgreens is open, as is security at our university, so two will be leaving early to get to work, keeping any Christmas celebrating postponed until tomorrow night. I wish everyone a great holiday, and may all your dreams come true. I thank goodness that I have an insulated house with running water and central heating to face this storm with, instead of how folks had to face bad winters in the past here in Nebraska. Merry Christmas to all!
Thursday, December 17, 2009
Nothing funny about shingles
I was diagnosed with shingles on Tuesday, and have tried to come up with something funny to say about the experience, but have lost my grin. I waited an hour to set up a same-day appointment after we first saw the blister rash (the dear husband was the first to diagnose it, so I was only going for a second opinion). The PA that I met with later that morning prescribed an antiviral med, and offered pain medication later if I need it. The reason I was so hot on getting the antiviral medicine is to try to keep down the postherpetic neuralgia that follows shingles - they say that your best chance to fight this is by getting medicine within the first 72 hours. Since I already wear enough neuralgia to share with a neighborhood, keeping more at bay is a big deal to me.
Lucky for me, I don't do paper hanging for a living (the rash is on the upper chest by my right arm). But wearing clothes is an issue - yet required for my job, imagine that. Having plain white t-shirt between me and outer clothes has been a big help, keeping the rougher fabric away from the rash.
I know that anyone with cancer or other diseases that affect the immune system have a higher chance of developing shingles, so this wasn't a total surprise. Just a big disappointment, another pain to deal with, and not how I wanted to face the holidays. I work hard to be just as reliable and vital at work as before the cancer came, and hate it whenever something comes up to remind the bosses that I am 'damaged goods'.
For more information about shingles, including photos in case you need to check out your own rashes, check out MedlinePlus: http://www.nlm.nih.gov/medlineplus/shingles.html
Lucky for me, I don't do paper hanging for a living (the rash is on the upper chest by my right arm). But wearing clothes is an issue - yet required for my job, imagine that. Having plain white t-shirt between me and outer clothes has been a big help, keeping the rougher fabric away from the rash.
I know that anyone with cancer or other diseases that affect the immune system have a higher chance of developing shingles, so this wasn't a total surprise. Just a big disappointment, another pain to deal with, and not how I wanted to face the holidays. I work hard to be just as reliable and vital at work as before the cancer came, and hate it whenever something comes up to remind the bosses that I am 'damaged goods'.
For more information about shingles, including photos in case you need to check out your own rashes, check out MedlinePlus: http://www.nlm.nih.gov/medlineplus/shingles.html
Sunday, December 13, 2009
Recent literature on Adenoid Cystic Carcinoma
If you or someone you know experienced ACC and was treated at the Ohio State Medical Center, you might be anonymously mentioned in their recent article published in The Laryngoscope:
Patterns of recurrence and survival of head and neck adenoid cystic carcinoma after definitive resection. http://pubmed.gov/19877226 . (To get full text of this article, check with your local library listed here: http://www.nlm.nih.gov/medlineplus/libraries.html - interlibrary loan fees may apply. You can also pay for a one-day access fee to the publisher off of this page: http://www3.interscience.wiley.com/journal/122666245/abstract.)
The abstract of this article says that there was "no difference in survival, rate of recurrence, or time to recurrence" between patients that received radiation therapy and those that received surgery alone. Speaking with my taste-impaired tongue, I would really want to spare anyone else radiation therapy if there is no evident benefit in keeping the cancer at bay, but this research only looked at 57 people that received radiation, out of a total of 99 people. Too small a group, folks. What I would hope to see is someone to re-run this research on many tertiary care center records, and get some useful evidence to help guide the treatment protocols for my type of cancer.
Another recent article, in the journal Cancer E;pidemiology, Biomarkers & Prevention, describes incidence rates of cancers of the major salivary glands, including Adenoid Cystic Carcinoma: Incidence of Carcinoma of the Major Salivary Glands According to the WHO Classification, 1992 to 2006: A Population-Based Study in the United States. http://pubmed.gov/19861510 (You can get an interlibrary loan copy - may incur fees - from the libraries listed in the link above, or go directly to the publisher's site and pay for access: http://cebp.aacrjournals.org/content/18/11/2899.short ) I guess this one may include me, since my cancer was detected and reported in 2006.
Patterns of recurrence and survival of head and neck adenoid cystic carcinoma after definitive resection. http://pubmed.gov/19877226 . (To get full text of this article, check with your local library listed here: http://www.nlm.nih.gov/medlineplus/libraries.html - interlibrary loan fees may apply. You can also pay for a one-day access fee to the publisher off of this page: http://www3.interscience.wiley.com/journal/122666245/abstract.)
The abstract of this article says that there was "no difference in survival, rate of recurrence, or time to recurrence" between patients that received radiation therapy and those that received surgery alone. Speaking with my taste-impaired tongue, I would really want to spare anyone else radiation therapy if there is no evident benefit in keeping the cancer at bay, but this research only looked at 57 people that received radiation, out of a total of 99 people. Too small a group, folks. What I would hope to see is someone to re-run this research on many tertiary care center records, and get some useful evidence to help guide the treatment protocols for my type of cancer.
Another recent article, in the journal Cancer E;pidemiology, Biomarkers & Prevention, describes incidence rates of cancers of the major salivary glands, including Adenoid Cystic Carcinoma: Incidence of Carcinoma of the Major Salivary Glands According to the WHO Classification, 1992 to 2006: A Population-Based Study in the United States. http://pubmed.gov/19861510 (You can get an interlibrary loan copy - may incur fees - from the libraries listed in the link above, or go directly to the publisher's site and pay for access: http://cebp.aacrjournals.org/content/18/11/2899.short ) I guess this one may include me, since my cancer was detected and reported in 2006.
Friday, November 27, 2009
Going away to celebrate the 25th Anniversary
It isn't the destination, it is the journey, and what a journey it has been! It is probably a good thing those two in the photo didn't know what they were up against in the 25 years ahead of them. 2 wonderful children; 2 wartime activations; 9 moves, including two overseas (I might have forgotten one or two); 3 stock market crashes; 2 experiences in purchasing a home; loss of loved ones; welcoming new loved ones; but overall, pretty darned lucky in life and in love. We are heading back to Kansas City to see the Plaza lights - that was about the most we could afford when we first married and had one night together before I headed back to college and he back to Ft. Sill on Monday after our wedding on a Dec. Saturday. We are going to splurge this time, and actually stay in town two whole nights...
Thursday, November 26, 2009
I wish everyone a fine Thanksgiving
I have so much to be thankful for, and you, the reader of this blog, are on my list. Thank you for following this blog, and for letting me know how the information (as well as occasional jokes) has been a help to you.
Monday, November 23, 2009
Turning down comments, thanks to spammers
I have been receiving a ton of spam comments from a couple of my blogs, including this one, so I am adjusting the comment feature to see if they will leave me alone in the future. Most of my regular readers know my email, and those that are new can find me through the profile. Just remember - neither I nor my readers need any more information about drugs for body parts that I do not possess.
Saturday, November 21, 2009
Adenoid Cystic Carcinoma in the news
A fellow Nebraskan with Adenoid Cystic Carcinoma is now in Tijuana, Mexico undergoing treatment at the Oasis of Hope. Here is the story about Adam Spady's current fight with ACC, as told in the Imperial Republican newspaper: http://www.imperialrepublican.com/index.php?option=com_content&view=article&id=1394:bake-sale-to-benefit-adam-spadys-cancer-treatment&catid=36:news&Itemid=76
I took a look at his recent Caring Bridge journal entry, where he does quite a job at explaining how a long-time cancer patient views the treatment system here in the USA. Since I too have had life altered due to treatment, I completely understand his refusal of more chemo, now that his ACC is back. (Hasn't been much chemo to show effectiveness against ACC in the research.) I am so glad Adam has his family with him, and wish them all the best in their fight. If you are interested in donating to his travel funds, there are instructions in the newspaper article about who is collecting donations. (Note to anyone wishing to create a non-profit to support cancer patients - please consider writing checks for travel costs incurred by patients. Please!)
Another item in the news is a press release from the Exelixis company, who presented promising results on their drug known as XL147 this week at the AACR-NCI-EORTC International Conference on Molecular Targets and Cancer Therapeutics in Boston. In the press release http://ir.exelixis.com/phoenix.zhtml?c=120923&p=irol-newsArticle&ID=1356958&highlight=, They specifically say that a patient with adenoid cystic carcinoma "had a documented decrease of metastatic disease". The trial only included 21 patients, though, and has only been going since October 6, 2009. Patients have been treated with a combination of the XL147 and 150mg of erlotinib. There are currently 5 studies in ClinicalTrials.gov that are using XL147: http://clinicaltrials.gov/ct2/results?term=xl147. I think this is the one that was reported at the conference: http://clinicaltrials.gov/ct2/show/NCT00692640?term=xl147&rank=4. I am very happy for the one ACC patient that experienced a measurable decrease from this drug, but they need to get a whole lot more of us in that study before the results are truly remarkable. If you have ACC mets, take a look at understanding clinical trials here: http://clinicaltrials.gov/ct2/info/understand , and consider contacting them to see if you can participate. Here is the contact information:
Please refer to this study by its ClinicalTrials.gov identifier: NCT00692640
Contacts
Contact: Exelixis Contact Line 1-866-939-4041
Locations
1. United States, Michigan
Karmanos Cancer Institute Recruiting
Detroit, Michigan, United States, 48201
Contact: Erik Troxtel 313-576-8496
Principal Investigator: Patricia LoRusso, DO
2. United States, Tennessee
Sarah Cannon Research Institute Recruiting
Nashville, Tennessee, United States, 37203
Contact: Narquita Kizzie 615-329-7426 Narquita.Kizzie@scresearch.net
Principal Investigator: Howard A. Burris, III, MD
I took a look at his recent Caring Bridge journal entry, where he does quite a job at explaining how a long-time cancer patient views the treatment system here in the USA. Since I too have had life altered due to treatment, I completely understand his refusal of more chemo, now that his ACC is back. (Hasn't been much chemo to show effectiveness against ACC in the research.) I am so glad Adam has his family with him, and wish them all the best in their fight. If you are interested in donating to his travel funds, there are instructions in the newspaper article about who is collecting donations. (Note to anyone wishing to create a non-profit to support cancer patients - please consider writing checks for travel costs incurred by patients. Please!)
Another item in the news is a press release from the Exelixis company, who presented promising results on their drug known as XL147 this week at the AACR-NCI-EORTC International Conference on Molecular Targets and Cancer Therapeutics in Boston. In the press release http://ir.exelixis.com/phoenix.zhtml?c=120923&p=irol-newsArticle&ID=1356958&highlight=, They specifically say that a patient with adenoid cystic carcinoma "had a documented decrease of metastatic disease". The trial only included 21 patients, though, and has only been going since October 6, 2009. Patients have been treated with a combination of the XL147 and 150mg of erlotinib. There are currently 5 studies in ClinicalTrials.gov that are using XL147: http://clinicaltrials.gov/ct2/results?term=xl147. I think this is the one that was reported at the conference: http://clinicaltrials.gov/ct2/show/NCT00692640?term=xl147&rank=4. I am very happy for the one ACC patient that experienced a measurable decrease from this drug, but they need to get a whole lot more of us in that study before the results are truly remarkable. If you have ACC mets, take a look at understanding clinical trials here: http://clinicaltrials.gov/ct2/info/understand , and consider contacting them to see if you can participate. Here is the contact information:
Please refer to this study by its ClinicalTrials.gov identifier: NCT00692640
Contacts
Contact: Exelixis Contact Line 1-866-939-4041
Locations
1. United States, Michigan
Karmanos Cancer Institute Recruiting
Detroit, Michigan, United States, 48201
Contact: Erik Troxtel 313-576-8496
Principal Investigator: Patricia LoRusso, DO
2. United States, Tennessee
Sarah Cannon Research Institute Recruiting
Nashville, Tennessee, United States, 37203
Contact: Narquita Kizzie 615-329-7426 Narquita.Kizzie@scresearch.net
Principal Investigator: Howard A. Burris, III, MD
Tuesday, November 10, 2009
Fight cyberchondria - use a librarian to help search health topics!
Saw this in the Washington Post:
A glut of Google can give you a virtual fever
http://www.washingtonpost.com/wp-dyn/content/article/2009/11/06/AR2009110603473.html
from the article: "It's a paradox: The more you read in an attempt to reduce your fear, the more you try to figure things out, the more anxiety peaks. Very few people know how to navigate the Internet and evaluate information when they're anxious, and yet that's when they tend to go online."
If you are searching for health information, and somehow found this blog, please put the keyboard down and contact your local public library. You can request searches with their reference department, and they will find only the information you need. My reference librarians kept me from focusing on how many people die with my kind of cancer, and I could concentrate on what my health care team was telling me, and the hard work of healing.
A glut of Google can give you a virtual fever
http://www.washingtonpost.com/wp-dyn/content/article/2009/11/06/AR2009110603473.html
from the article: "It's a paradox: The more you read in an attempt to reduce your fear, the more you try to figure things out, the more anxiety peaks. Very few people know how to navigate the Internet and evaluate information when they're anxious, and yet that's when they tend to go online."
If you are searching for health information, and somehow found this blog, please put the keyboard down and contact your local public library. You can request searches with their reference department, and they will find only the information you need. My reference librarians kept me from focusing on how many people die with my kind of cancer, and I could concentrate on what my health care team was telling me, and the hard work of healing.
Monday, November 09, 2009
What brought about the Cheeky Librarian blog?
I gave a bit of the reason on why the Cheeky Librarian blog came to be when I spoke at the Creighton University event. I first started writing emails to my friends to keep them up with the adventures that culminated in my diagnosis of ACC. Then, since I had already been a librarian blogger (http://libeducation.blogspot.com), I figured this medium might be the answer I was looking for in spreading the word. My posts began with my radiation treatment, since I figured telling my experiences might offer someone else a bit of information if they were on a similar path. (Adenoid Cystic Carcinoma is so rare, telling more information about my diagnosis wouldn't offer much to anyone else unless they were my true friend or a voyeur, and my true friends already knew most of the story, so I haven't written much here.) My mom generally said in the best mom-like way that one's issues do not impact the universe, which I take to mean that just because I am going through this stuff, I should not expect others to be as wrapped up in it as I felt some days. So having the blog gave me a venue to record the events in a non-intrusive way.
A funny thing happened while writing the posts, though - I think I read them more than anyone else. My writing became my own cheer leading, showing me that I had already endured a lot, and I could endure more as the radiation treatments zapped their way from parotid to skull base every business day for 6 weeks. Even in the darkest days, I saw humor from earlier ones, and could then find the humor in current situations. On days when I feared going out in public because of the way I looked, I saw photos of myself and figured I could bear the stares again. I was reminded of the kindnesses of my family and my friends, and felt buoyed up all over again, as if they had just done the kindnesses.
Now that I am healed up (from both the initial treatments, and the skull surgery that followed in 2007), I keep adding to the blog in order to raise awareness of others facing ACC (check out the ACC in the news posts as well as the blogs on the right side of this blog), sources of good information, and general life-stuff. I still read this thing, and need to see that life does go on, scan-dances and all.
A funny thing happened while writing the posts, though - I think I read them more than anyone else. My writing became my own cheer leading, showing me that I had already endured a lot, and I could endure more as the radiation treatments zapped their way from parotid to skull base every business day for 6 weeks. Even in the darkest days, I saw humor from earlier ones, and could then find the humor in current situations. On days when I feared going out in public because of the way I looked, I saw photos of myself and figured I could bear the stares again. I was reminded of the kindnesses of my family and my friends, and felt buoyed up all over again, as if they had just done the kindnesses.
Now that I am healed up (from both the initial treatments, and the skull surgery that followed in 2007), I keep adding to the blog in order to raise awareness of others facing ACC (check out the ACC in the news posts as well as the blogs on the right side of this blog), sources of good information, and general life-stuff. I still read this thing, and need to see that life does go on, scan-dances and all.
Adenoid Cystic Carcinoma in the news
From Salt Lake City's Deseret News: Team, Grandma Lift Each Other
http://www.deseretnews.com/article/705342286/Team-grandma-lift-each-other.html
Hey, hey, he's a Monkee! - an interview with Peter Tork from the Lafayette-West Lafeyette, Indiana Journal and Courier:
http://www.jconline.com/article/20091106/ENT06/911060342/Hey--hey--he-s-a-Monkee-
And another story about the discovery of the gene that causes ACC http://cordis.europa.eu/fetch?CALLER=EN_NEWS&ACTION=D&SESSION=&RCN=31360
The statistics given in this story may cause one to freak out (I am reserving judgement at this time): 80%-90% ACC patients die within 10 to 15 years of diagnosis, with 15 year survival rate of 40%. (This just means I gotta live faster, that's all.)
http://www.deseretnews.com/article/705342286/Team-grandma-lift-each-other.html
Hey, hey, he's a Monkee! - an interview with Peter Tork from the Lafayette-West Lafeyette, Indiana Journal and Courier:
http://www.jconline.com/article/20091106/ENT06/911060342/Hey--hey--he-s-a-Monkee-
And another story about the discovery of the gene that causes ACC http://cordis.europa.eu/fetch?CALLER=EN_NEWS&ACTION=D&SESSION=&RCN=31360
The statistics given in this story may cause one to freak out (I am reserving judgement at this time): 80%-90% ACC patients die within 10 to 15 years of diagnosis, with 15 year survival rate of 40%. (This just means I gotta live faster, that's all.)
Tuesday, November 03, 2009
Adenoid Cystic Carcinoma in the news
I saw this in the news over the weekend:
$6.5 million gift to UCSF from Irwin and Joan Jacobs for head and neck cancer research
http://news.ucsf.edu/releases/6.5-million-gift-to-ucsf-from-irwin-and-joan-jacobs-for-head-and-neck-cance/
Mr. Jacobs was diagnosed with Adenoid Cystic Carcinoma in 2007, and went through treatment. He and his wife have endowed two distinguished professorships, one in otolaryngology and one in radiation oncology. The press release says it is thought to be the largest gift for head/neck cancer research.
I picked up a couple of things from this announcement:
I hope all of us ACC-wearing folks are known for something other than having a rare cancer - we are all so much more than that, as his bios illustrate. Neither one that I checked says anything about having rare cancer:
http://en.wikipedia.org/wiki/Irwin_M._Jacobs
http://www.qualcomm.com/who_we_are/leadership/exec_bios/irwin_jacobs.html
Another thing - I know now how big a donation I need to make to support Adenoid Cystic Carcinoma research, and have it be the biggest (grin!). If you have the chance to donate to support research on this rare cancer, I can recommend the Adenoid Cystic Carcinoma Research Foundation: http://www.accrf.org/. And they aren't expecting us to call only when we have a spare $7 million lying around - they take any amount and put it to very good use.
$6.5 million gift to UCSF from Irwin and Joan Jacobs for head and neck cancer research
http://news.ucsf.edu/releases/6.5-million-gift-to-ucsf-from-irwin-and-joan-jacobs-for-head-and-neck-cance/
Mr. Jacobs was diagnosed with Adenoid Cystic Carcinoma in 2007, and went through treatment. He and his wife have endowed two distinguished professorships, one in otolaryngology and one in radiation oncology. The press release says it is thought to be the largest gift for head/neck cancer research.
I picked up a couple of things from this announcement:
I hope all of us ACC-wearing folks are known for something other than having a rare cancer - we are all so much more than that, as his bios illustrate. Neither one that I checked says anything about having rare cancer:
http://en.wikipedia.org/wiki/Irwin_M._Jacobs
http://www.qualcomm.com/who_we_are/leadership/exec_bios/irwin_jacobs.html
Another thing - I know now how big a donation I need to make to support Adenoid Cystic Carcinoma research, and have it be the biggest (grin!). If you have the chance to donate to support research on this rare cancer, I can recommend the Adenoid Cystic Carcinoma Research Foundation: http://www.accrf.org/. And they aren't expecting us to call only when we have a spare $7 million lying around - they take any amount and put it to very good use.
Tuesday, October 27, 2009
Join Jeanne Sather and I in Omaha at Creighton!
If you are in Omaha, please come by the Creighton Health Sciences Library at 3:30pm and hear Jeanne, I, and Dr. Amy Haddad speak on "Writing as a Therapeutic Tool". Dr. Haddad is a poet, Jeanne is a journalist, and (of course) I am the librarian. It promises to be a great hour of idea sharing! I am really looking forward to it.
Saturday, October 24, 2009
CNN's medical expert weighs in on Suzanne Somers' advice
I don't generally go to CNN for my health advice, and am not sure how many of my readers do, but I found this opinion piece from CNNhealth.com's Conditions expert, Dr. Otis Brawley, and wanted to share for your information.
http://www.cnn.com/2009/OPINION/10/24/commentary.brawley.cancer.treatment/index.html?eref=rss_latest
I am all for investigating with my health care provider any and all alternative and complementary treatments - note: WITH my health care provider. My radiation oncologist probably got real tired of my reporting each week what multivitamin I was taking, but I reported them along with the prescribed medications, just in case it made a difference (example: read in the oped piece about Vit. C interactions with HIV meds). And all during my initial treatment and recovery months, I felt attacked if someone came over and started forcing their (usually non-health care professional) opinion of how I should be or should not be treated. Suzanne Somers just did it more publicly than most. Just the other night, while taking asthmatic number one son to Urgent Care, a stranger in the waiting room walked over to me and thrust a card at me with a name of a 'natural supplement' that she cured her son's asthma with. Gee, let me look up the evidence on that product, and get right back to you.
If you are considering other treatments, and they are out there in all levels of 'good' and 'bad', please let your health care provider know about them, and ask for a search by a medical librarian on any testing that has been done previously or currently with the product/treatment. Scientific studies are being conducted on many alternative treatments, and you can find out if you qualify to be added to the patient group and how to participate - just ask. But as a librarian and a fellow cancer warrior, I recommend that you take any advice that comes from outside your cancer treatment team (meaning: in-laws, concerned adult children, the Internet sites, discussion lists, celebrities, anonymous emails asking for money for products, whatever) with a huge grain of salt, and run the advice by your cancer treatment team. Yes, if there had been any way I could have avoided the radiation and surgery by dancing outside in the moonlight naked, I would have, you betcha (sorry, neighbors). But when considering the evidence showing outcomes of treatment procedures, me and the team (picture them like the Justice League) figured that was the best route at the time. Someday, folks will look back at my treatment as barbaric, as they simply swallow a pill to change the genes of Adenoid Cystic Carcinoma, just as we look back at the practice of bleeding patients as barbaric.
Repeating: evaluate the source of the information you are considering. Whatever worked for Ms. Somers, I am happy for her and wish her well, but wonder at the same time why she is charging for her book if it is going to do so much good health-wise - why not just put it up on the web for free? We need to look at other information offered to us the same way - if a company/person is making money on the advice/product that they are proposing cures cancer with or without doctors, how does that skew the advice they are giving? Yes, that includes checking to see if your doctor is being paid by any of the pharmaceutical manufacturers or medical device manufacturers - a patient should ask, and consider any potential conflict of interest.
http://www.cnn.com/2009/OPINION/10/24/commentary.brawley.cancer.treatment/index.html?eref=rss_latest
I am all for investigating with my health care provider any and all alternative and complementary treatments - note: WITH my health care provider. My radiation oncologist probably got real tired of my reporting each week what multivitamin I was taking, but I reported them along with the prescribed medications, just in case it made a difference (example: read in the oped piece about Vit. C interactions with HIV meds). And all during my initial treatment and recovery months, I felt attacked if someone came over and started forcing their (usually non-health care professional) opinion of how I should be or should not be treated. Suzanne Somers just did it more publicly than most. Just the other night, while taking asthmatic number one son to Urgent Care, a stranger in the waiting room walked over to me and thrust a card at me with a name of a 'natural supplement' that she cured her son's asthma with. Gee, let me look up the evidence on that product, and get right back to you.
If you are considering other treatments, and they are out there in all levels of 'good' and 'bad', please let your health care provider know about them, and ask for a search by a medical librarian on any testing that has been done previously or currently with the product/treatment. Scientific studies are being conducted on many alternative treatments, and you can find out if you qualify to be added to the patient group and how to participate - just ask. But as a librarian and a fellow cancer warrior, I recommend that you take any advice that comes from outside your cancer treatment team (meaning: in-laws, concerned adult children, the Internet sites, discussion lists, celebrities, anonymous emails asking for money for products, whatever) with a huge grain of salt, and run the advice by your cancer treatment team. Yes, if there had been any way I could have avoided the radiation and surgery by dancing outside in the moonlight naked, I would have, you betcha (sorry, neighbors). But when considering the evidence showing outcomes of treatment procedures, me and the team (picture them like the Justice League) figured that was the best route at the time. Someday, folks will look back at my treatment as barbaric, as they simply swallow a pill to change the genes of Adenoid Cystic Carcinoma, just as we look back at the practice of bleeding patients as barbaric.
Repeating: evaluate the source of the information you are considering. Whatever worked for Ms. Somers, I am happy for her and wish her well, but wonder at the same time why she is charging for her book if it is going to do so much good health-wise - why not just put it up on the web for free? We need to look at other information offered to us the same way - if a company/person is making money on the advice/product that they are proposing cures cancer with or without doctors, how does that skew the advice they are giving? Yes, that includes checking to see if your doctor is being paid by any of the pharmaceutical manufacturers or medical device manufacturers - a patient should ask, and consider any potential conflict of interest.
Tuesday, October 20, 2009
Bathroom is DONE!
Just need to install the towel racks, and buy one more rug to put in front of the shower. Dear husband and I put the last of the IKEA drawers and doors together tonight (catalog, p.202-203). The sink plumbing (water in and drain out) took about 12 visits to Lowes. We have another set up just like this for our upstairs bathroom, so we are now trained to install that one too - maybe for spring break? Anyway, it was great to make plans and see them come to completion - I doubt I will ever take that for granted again.
Thursday, October 15, 2009
Adenoid Cystic Carcinoma in the news
Thanks so much to Korean Cuisine, here is press release on a story from the Proceedings of the National Academy of Sciences (PNAS):
New cancer gene discovered
http://www.physorg.com/news174662445.html
Says that they have determined that ACC is caused by a newly discovered fusion gene. From the press release:
"Now that we know what the cancer is down to, we can also develop new and more effective treatments for this often highly malignant and insidious form of cancer," says professor Göran Stenman, who heads the research group at the Lundberg Laboratory for Cancer Research at the Sahlgrenska Academy. "One possibility might be to develop a drug that quite simply turns off this gene."
I couldn't find the citation listed in PubMed yet - here is what the press release included:
Recurrent fusion of the MYB and NFIB transcription factor genes in carcinomas of the breast and head and neck; Marta Persson, Ywonne Andrén, Joachim Mark, Hugo M. Horlings, Fredrik Persson, Göran Stenman
New cancer gene discovered
http://www.physorg.com/news174662445.html
Says that they have determined that ACC is caused by a newly discovered fusion gene. From the press release:
"Now that we know what the cancer is down to, we can also develop new and more effective treatments for this often highly malignant and insidious form of cancer," says professor Göran Stenman, who heads the research group at the Lundberg Laboratory for Cancer Research at the Sahlgrenska Academy. "One possibility might be to develop a drug that quite simply turns off this gene."
I couldn't find the citation listed in PubMed yet - here is what the press release included:
Recurrent fusion of the MYB and NFIB transcription factor genes in carcinomas of the breast and head and neck; Marta Persson, Ywonne Andrén, Joachim Mark, Hugo M. Horlings, Fredrik Persson, Göran Stenman
Wednesday, October 14, 2009
How to read articles on health and healthcare
Dr. Alicia White wrote this article that was posted to the United Kingdom's National Health Service site this past January:
http://www.nhs.uk/news/pages/howtoreadarticlesabouthealthandhealthcare.aspx
from the article: "... you need to analyse the article to see what it says about the research it is reporting on. Bazian (the company I work for) has appraised hundreds of articles for Behind The Headlines on NHS Choices, and we’ve developed the following questions to help you figure out which articles you’re going to believe and which you’re not."
http://www.nhs.uk/news/pages/howtoreadarticlesabouthealthandhealthcare.aspx
from the article: "... you need to analyse the article to see what it says about the research it is reporting on. Bazian (the company I work for) has appraised hundreds of articles for Behind The Headlines on NHS Choices, and we’ve developed the following questions to help you figure out which articles you’re going to believe and which you’re not."
Sunday, October 11, 2009
NIH is expanding the Rare Diseases Clinical Research Network
from a press release seen at http://www.medadnews.com/News/Index.cfm?articleid=656279
(here is the original press release from the NIH site: http://www.nih.gov/news/health/oct2009/od-05.htm )
It appears that we as Adenoid Cystic Carcinoma survivors may have a chance to directly participate in clinical data collection. Describing the second phase of the RDCRN: "In this second phase of the RDCRN, the University of South Florida will continue these data management efforts, under a new name and with a slightly different charge, as the Data Management Coordinating Center (DMCC). The DMCC will develop uniform investigative clinical research protocols for data collection in collaboration with the RDCRN Steering Committee, monitor protocol adherence, data collection and data submission, and work with the each consortium's Data and Safety Monitoring Boards to establish protocols for adverse events notification and reporting."
MD Anderson is one of the 19 consortia listed, and will be studying ACC and other rare salivary gland cancers:
"CONSORTIUM TITLE, INSTITUTION, AND PRINCIPAL INVESTIGATOR: Molecular and Epidemiologic Characterization of Salivary Gland Carcinomas - University of Texas M.D. Anderson Cancer Center - Adel K. El-Naggar, M.D., Ph.D.
NIH COLLABORATORS: ORDR, NIDCR
DISEASES TO BE STUDIED: Salivary gland carcinomas: mucoepidermoid carcinoma (MEC), adenoid cystic carcinoma (ACC), adenocarcinoma (ACC)"
The RDCRN has not updated their page that shows open studies since 1 August 2009: http://rarediseasesnetwork.epi.usf.edu/study-overview.htm. I will keep watch on their homepage to see if the new studies are listed: http://rarediseasesnetwork.epi.usf.edu/ , as well as watch for that new DMCC site to start up - that may be the site that offers information on the new studies. I will announce the arrival of such a website on this blog, you can guarantee it. I want every one of us counted (that the study will include) in any future studying that may be done. (Caveat - I just saw this announcement at NIDCR: http://www.nidcr.nih.gov/GrantsAndFunding/See_Funding_Opportunities_Sorted_By/ConceptClearance/CurrentCC/TumorBiorepository.htm, so the data Dr. El-Naggar may be seeking may be biospecimens, and not our personal data. If this is so, I am slightly frustrated - someone should be creating a patient repository of our information to see if there is any common denominators that lead scientists to see what brings on this kind of cancer.)
Dr. El-Naggar, the PI on salivary gland project, is also Editor-in-Chief of the BioMed Central journal, "Head & Neck Oncology" http://www.headandneckoncology.org/edboard/start.asp?id=725260, and is a heavy-duty researcher in the pathology world: http://www.ucl.ac.uk/hnods/Council/Adel_El_Naggar . Here is his faculty page at MD Anderson: http://faculty.mdanderson.org/Adel_El-Naggar/Default.asp?SNID=1060595112
(here is the original press release from the NIH site: http://www.nih.gov/news/health/oct2009/od-05.htm )
It appears that we as Adenoid Cystic Carcinoma survivors may have a chance to directly participate in clinical data collection. Describing the second phase of the RDCRN: "In this second phase of the RDCRN, the University of South Florida will continue these data management efforts, under a new name and with a slightly different charge, as the Data Management Coordinating Center (DMCC). The DMCC will develop uniform investigative clinical research protocols for data collection in collaboration with the RDCRN Steering Committee, monitor protocol adherence, data collection and data submission, and work with the each consortium's Data and Safety Monitoring Boards to establish protocols for adverse events notification and reporting."
MD Anderson is one of the 19 consortia listed, and will be studying ACC and other rare salivary gland cancers:
"CONSORTIUM TITLE, INSTITUTION, AND PRINCIPAL INVESTIGATOR: Molecular and Epidemiologic Characterization of Salivary Gland Carcinomas - University of Texas M.D. Anderson Cancer Center - Adel K. El-Naggar, M.D., Ph.D.
NIH COLLABORATORS: ORDR, NIDCR
DISEASES TO BE STUDIED: Salivary gland carcinomas: mucoepidermoid carcinoma (MEC), adenoid cystic carcinoma (ACC), adenocarcinoma (ACC)"
The RDCRN has not updated their page that shows open studies since 1 August 2009: http://rarediseasesnetwork.epi.usf.edu/study-overview.htm. I will keep watch on their homepage to see if the new studies are listed: http://rarediseasesnetwork.epi.usf.edu/ , as well as watch for that new DMCC site to start up - that may be the site that offers information on the new studies. I will announce the arrival of such a website on this blog, you can guarantee it. I want every one of us counted (that the study will include) in any future studying that may be done. (Caveat - I just saw this announcement at NIDCR: http://www.nidcr.nih.gov/GrantsAndFunding/See_Funding_Opportunities_Sorted_By/ConceptClearance/CurrentCC/TumorBiorepository.htm, so the data Dr. El-Naggar may be seeking may be biospecimens, and not our personal data. If this is so, I am slightly frustrated - someone should be creating a patient repository of our information to see if there is any common denominators that lead scientists to see what brings on this kind of cancer.)
Dr. El-Naggar, the PI on salivary gland project, is also Editor-in-Chief of the BioMed Central journal, "Head & Neck Oncology" http://www.headandneckoncology.org/edboard/start.asp?id=725260, and is a heavy-duty researcher in the pathology world: http://www.ucl.ac.uk/hnods/Council/Adel_El_Naggar . Here is his faculty page at MD Anderson: http://faculty.mdanderson.org/Adel_El-Naggar/Default.asp?SNID=1060595112
Tuesday, October 06, 2009
Man, I hope Keas has a librarian or two
I just saw this story on the New York Times site: Adding Health Advice to Online Medical Records http://www.nytimes.com/2009/10/06/technology/06bosworth.html?_r=1 .
The reporter, Steve Lohr, says in the article:
"The long-term answer to improving the health of the nation’s population and curbing costs, experts agree, is to help people make smarter decisions day in and day out about their own health. And the most powerful potential tool in the march toward intelligent consumerism in health care may be the Web."
I completely agree. Speaking as a librarian that has delivered consumer health information (and used consumer health information to make my own decisions) now since 1992, my recommendation to Mr. Adam Bosworth, owner of Keas, Inc. (http://www.keas.com), is to hire a team of librarians to join up with the computer experts, and the result will be successful and life-changing to those that sign up for the service.
Friday, October 02, 2009
Still looking to the future strongly
It has been a year since the last big round of doctors and scans and the worry (that would not leave no matter how much I worked to make it go away) that the cancer had returned, all the while during the worst global economic meltdown of my lifetime - and I am still looking to the future. I have my last radiation oncology appointment next week - seems I am too boring for them to continue following (grin). Well, really, this is the natural progression of their care - the doctor won't want to see me again until late effects might arise from the radiation I received (in about 20 years, if I have anything to do with it). Throughout the last 3 years of healing after the cancer treatment, I have been working towards raising my head and looking outward, instead of inward, and I have arrived at that point. Heck, I am even considering what my next career step might be in academia-land - how fortunate is that? Yes, I still deal with aches/pains/lack of taste/cold intolerance, but hey, that's life, and I am dealing with it in style (I hope). I remain ready to help anyone locate information sources for their own treatment paths - I am still a librarian, thanks to that skilled surgeon that removed the skull lesion in time, and the original surgeon that removed the tumor from my cheek, and the health care professionals/family members/friends that never gave up on me and kept me from giving up on my own ability to overcome some major crud (and that includes readers of this blog of all flavors-you know who you are!). To all readers out there - if there has been anything in this blog of use to you as you travel your own individual path, I am glad and it makes it worth the work. Please always remember to discuss any self-care activities you might read that worked/didn't work for me with your own health care professionals - each of us is different, and our care is individualized, so the health care professionals need to know what we are doing in the self-care arena. Here's to many more years for us all.
Sunday, September 27, 2009
Adenoid Cystic Carcinoma in the news
Thanks to a great northern reader, I received the following news story in my email about a fundraiser for an ACC warrior:
Fundraiser set for woman with rare form of cancer
http://www.wausaudailyherald.com/apps/pbcs.dll/article?AID=2009909250663
(another story with photo http://www.wausaudailyherald.com/article/20090923/WDH0101/909230632/1981/WDHopinion)
The fundraiser actually took place yesterday for Kimberly Kukinski, 25, in Weston (Wisconsin, I think - the bad thing about online newspapers is that they rarely say what state they originate from). Wishing you and your family the best, Ms. Kukinski. With the support you have experienced, you will go far, in this Cheeky Librarian's opinion.
Fundraiser set for woman with rare form of cancer
http://www.wausaudailyherald.com/apps/pbcs.dll/article?AID=2009909250663
(another story with photo http://www.wausaudailyherald.com/article/20090923/WDH0101/909230632/1981/WDHopinion)
The fundraiser actually took place yesterday for Kimberly Kukinski, 25, in Weston (Wisconsin, I think - the bad thing about online newspapers is that they rarely say what state they originate from). Wishing you and your family the best, Ms. Kukinski. With the support you have experienced, you will go far, in this Cheeky Librarian's opinion.
Still repairing the home place
Apologize for the long stretches without a post, but number one son works nights every other week, and is now staying days in the computer room, so I don't have the access to this machine that I used to enjoy. Here's a tip for anyone that would like to meet friends, neighbors, and complete strangers - set up a dumpster in your driveway, and fill it with an assortment of damaged drywall, bathroom fixtures, and various items from around the home. Then just wait - soon, the world will be knocking at your door, asking for permission to pick through the pile for treasures. Or, they won't knock, and just empty their trunk into your receptacle. Either way, you will broaden your network of contacts faster than 'friending' on Facebook...
This is our 25th year of marriage. Instead of Cancun or a trans-Atlantic cruise, we are repairing the house. Believe me, it will be a better time and less stress than a big vacation, and we will be able to enjoy our home even more!
This is our 25th year of marriage. Instead of Cancun or a trans-Atlantic cruise, we are repairing the house. Believe me, it will be a better time and less stress than a big vacation, and we will be able to enjoy our home even more!
Wednesday, September 23, 2009
The answer: 746
The question: how far must a Cheeky Librarian go to get to the nearest IKEA? Sorry for the lack of postings on this and my other blogs, but renovations on my house are taking over my life. And I am so glad to be able to experience this! A couple more weeks, and things should be getting back to a manageable level...
Tuesday, September 15, 2009
Goodbye Patrick
Patrick Swayze has died from cancer. Dammit.
I guess I am less than 6 degrees separated from him - I am a also a reluctant member of the cancer club, and I live 3 blocks away from where the hotel scene was filmed for the movie To Wong Foo... you can see it as it used to be about 3:09 minutes into this video snip http://www.youtube.com/watch?v=FbwYsfyEEOc&feature=fvw . That is the place I stayed at during my very first visit to Omaha in 1992. It was torn down for a strip mall before we moved here in '99, but the movie was filmed in between.
His acting in the movie Ghost kept me going while my husband was in the Gulf War - it was the last movie we saw together before he shipped out. We knew privately between us that we figured we would meet again, no matter what, and the movie helped to reinforce that idea.
Now his example of how to tell cancer to go to hell and keep on working on new projects keeps me going in a different way.
I guess I am less than 6 degrees separated from him - I am a also a reluctant member of the cancer club, and I live 3 blocks away from where the hotel scene was filmed for the movie To Wong Foo... you can see it as it used to be about 3:09 minutes into this video snip http://www.youtube.com/watch?v=FbwYsfyEEOc&feature=fvw . That is the place I stayed at during my very first visit to Omaha in 1992. It was torn down for a strip mall before we moved here in '99, but the movie was filmed in between.
His acting in the movie Ghost kept me going while my husband was in the Gulf War - it was the last movie we saw together before he shipped out. We knew privately between us that we figured we would meet again, no matter what, and the movie helped to reinforce that idea.
Now his example of how to tell cancer to go to hell and keep on working on new projects keeps me going in a different way.
Saturday, September 12, 2009
Adenoid Cystic Carcinoma in the news
Checking the news, I located the following stories on our rare cancer:
Bout with cancer hasn't affected Pomegranate employee's upbeat attitude (Greenville News)
http://www.greenvilleonline.com/article/20090902/CITYPEOPLE/909020302/1062
Friend remembered with fund-raiser (MassLive.com)
http://www.masslive.com/metroeastplus/republican/index.ssf?/base/news-5/1252394290285930.xml&coll=1
Bout with cancer hasn't affected Pomegranate employee's upbeat attitude (Greenville News)
http://www.greenvilleonline.com/article/20090902/CITYPEOPLE/909020302/1062
Friend remembered with fund-raiser (MassLive.com)
http://www.masslive.com/metroeastplus/republican/index.ssf?/base/news-5/1252394290285930.xml&coll=1
Thursday, September 10, 2009
Preparing for winter
Ok, no one specifically TOLD me that having a plate in your head gives you more headaches in the winter. Um, guys - when I was showing up in January with really bad headaches, you could have said - yes, you will be experiencing those with the low temps. Honest, I would rather have gone that direction rather than thinking that critters were growing in my head again...
In the interest of preparing for yet another plains winter, complete with frigid wind chills, I have been scouting out solutions to keep the head warm as I walk from parking to work, from the car to the store, etc. (We aren't talking about going on marathons, here, but just something to keep the day from starting out with a roaring headache.) This one seems interesting: Skull face thermal mask http://xchoppers.com/product_info.php?products_id=1151. It would come up around the plate area near my left ear, cover the radiated area on my left neck and cheek, and keep the hair from messing up. Yeah, that's the ticket...
If I want to go with a more ordinary fashion statement, military surplus offers a choice:
GI Polypropylene Balaclavas
http://www.militaryclothing.com/IBS/SimpleCat/Product/asp/hierarchy/0O06/product-id/500425.html . Or this company, Killer Hats (love the name!), offers a 6 in 1 extreme cold weather hood http://www.killerhats.com/hhh.html .
Let me know if you see other choices I should consider. I need something that will cover the head and keep out the wind for no more than 20 minute stretches of time. I will let you know if I decide to go in for extreme camping, so we can search for those Arctic survival gear head coverings!
In the interest of preparing for yet another plains winter, complete with frigid wind chills, I have been scouting out solutions to keep the head warm as I walk from parking to work, from the car to the store, etc. (We aren't talking about going on marathons, here, but just something to keep the day from starting out with a roaring headache.) This one seems interesting: Skull face thermal mask http://xchoppers.com/product_info.php?products_id=1151. It would come up around the plate area near my left ear, cover the radiated area on my left neck and cheek, and keep the hair from messing up. Yeah, that's the ticket...
If I want to go with a more ordinary fashion statement, military surplus offers a choice:
GI Polypropylene Balaclavas
http://www.militaryclothing.com/IBS/SimpleCat/Product/asp/hierarchy/0O06/product-id/500425.html . Or this company, Killer Hats (love the name!), offers a 6 in 1 extreme cold weather hood http://www.killerhats.com/hhh.html .
Let me know if you see other choices I should consider. I need something that will cover the head and keep out the wind for no more than 20 minute stretches of time. I will let you know if I decide to go in for extreme camping, so we can search for those Arctic survival gear head coverings!
Catching up;
One thing that went by the wayside during cancer treatment and recovery was keeping up the household repairs. We are currently fixing that situation - the plumber and his crew is due in any minute now to wreck our basement and sewer stack, and fix it all back up again. Home remodeling has to be way up there on the stress scale, but I know we will be enjoying freshly painted walls and working drains after they get done doing their magic.
Wednesday, September 02, 2009
Maybe I COULD be a food critic
Just learned that they have developed an electronic tongue that 'tastes' sweetness like the real thing:
Hmmm - imagine me sitting down, the waiter placing the napkin in my lap, and after the first course is served, I break out a plastic box. The waiter is concerned - could I be applying makeup at the table? (Gasp!) I reassure him that this is the machine that I will judge the taste of the food with for my food column.Yeah, it could happen...
Tuesday, August 25, 2009
Life is just one adventure after another
I have been very busy the past couple of weeks, living life. Our university has geared up for another year of important instruction for our future health care professionals - it is a real honor to be serving the students and the faculty with their information needs, as they go about their business of saving lives. The homelife has also been busy - number one daughter returned from her summer in Turkey, and began her Freshman year at the state university. Number one son has lost a room mate, so will be moving home for economical reasons until he can save up enough money to change his own future. Dear husband just celebrated his last 4oth birthday, and really liked the Crystal Skull I gave him (figure one of us should still drink alcohol). I haven't been doing much in the evenings, just recuperating from the job each day - guess that means I have reached middle age, huh. Here's to everyone living their lives as they see fit and to each their own abilities.
Monday, August 17, 2009
Pain as a predictor of head/neck cancer survivorship
After Cancer Now What has a post about a recent research article in the August issue of Archives of Otolaryngology-Head & Neck Surgery : The Role of Pain in Head and Neck Cancer Recurrence and Survivorship http://archotol.ama-assn.org/cgi/content/abstract/135/8/789 .
This longitudinal study followed 339 patients with head/neck cancer at the University of Iowa between Feb 28, 1998 and Nov 30, 2001. Self-reporting surveys were filled out by the patients, indicating their level of pain. From the abstract: "Pain was associated with age, general physical and mental health conditions, depressive symptoms, survival rate, and recurrence within the first year. The 5-year survival rate was 81.8% for patients with low posttreatment pain and 65.1% for those with high pain."
Note: I have not read the full text of this article, just the abstract. After Cancer Now What mentions more, possibly from a press release about the article. You can request the full-text from your local library, or from one listed in this directory: http://www.nlm.nih.gov/medlineplus/libraries.html
If you are experiencing pain, tell your doctor. If attention isn't given to figuring out what is causing your pain, tell another health care provider. Keep telling. Pain is a biggy - a red flag symptom - and it should be monitored and managed, just as your other symptoms. My health care team has addressed my various pains quickly each time I have experienced them - the headaches, which turned out to be the benign "whatever" growing between the layers in my skull; the chest and abdomen pains, both of which resulted in extensive scanning that didn't turn up cancer, thank goodness, but I can now attest that scans do not reduce pains (figure they are just due to old age, and I live with them). I run around with a headache most days that ranks about a 4 on the pain scale - other days, just like before cancer, I have stronger headaches, but nothing like when that thing was growing in my skull, or the original tumor that caused me pain for 3 years. Pay attention to pain, and let your health professionals know if you are experiencing "the usual", or something more.
This longitudinal study followed 339 patients with head/neck cancer at the University of Iowa between Feb 28, 1998 and Nov 30, 2001. Self-reporting surveys were filled out by the patients, indicating their level of pain. From the abstract: "Pain was associated with age, general physical and mental health conditions, depressive symptoms, survival rate, and recurrence within the first year. The 5-year survival rate was 81.8% for patients with low posttreatment pain and 65.1% for those with high pain."
Note: I have not read the full text of this article, just the abstract. After Cancer Now What mentions more, possibly from a press release about the article. You can request the full-text from your local library, or from one listed in this directory: http://www.nlm.nih.gov/medlineplus/libraries.html
If you are experiencing pain, tell your doctor. If attention isn't given to figuring out what is causing your pain, tell another health care provider. Keep telling. Pain is a biggy - a red flag symptom - and it should be monitored and managed, just as your other symptoms. My health care team has addressed my various pains quickly each time I have experienced them - the headaches, which turned out to be the benign "whatever" growing between the layers in my skull; the chest and abdomen pains, both of which resulted in extensive scanning that didn't turn up cancer, thank goodness, but I can now attest that scans do not reduce pains (figure they are just due to old age, and I live with them). I run around with a headache most days that ranks about a 4 on the pain scale - other days, just like before cancer, I have stronger headaches, but nothing like when that thing was growing in my skull, or the original tumor that caused me pain for 3 years. Pay attention to pain, and let your health professionals know if you are experiencing "the usual", or something more.
Saturday, August 15, 2009
Cancer - becoming another chronic illness?
There is a report out in the August 15th issue of Cancer Research that cancer deaths are decreasing, which leads one to expect more of us to be living longer with the disease and treatment after-effects:
Cancer Deaths Declining, Especially Among Young
http://www.usatoday.com/news/health/2009-08-14-cancer-rates_N.htm
You can read the original article's abstract at the Cancer Research journal's site - you will have to go through your local public or medical library to get a copy of the full-text article (interlibrary loan fees may apply):
The Decline in U.S. Cancer Mortality in People Born Since 1925
http://cancerres.aacrjournals.org/cgi/content/short/69/16/6500
Cancer Deaths Declining, Especially Among Young
http://www.usatoday.com/news/health/2009-08-14-cancer-rates_N.htm
You can read the original article's abstract at the Cancer Research journal's site - you will have to go through your local public or medical library to get a copy of the full-text article (interlibrary loan fees may apply):
The Decline in U.S. Cancer Mortality in People Born Since 1925
http://cancerres.aacrjournals.org/cgi/content/short/69/16/6500
Friday, August 14, 2009
The Soul Seat - gotta get one
If you are sitting at your computer all uncomfortable, have I got the cure for you.
I happen to know the creator of the Soul Seat - a chair designed by Pack Mathews, in Columbia, Missouri: http://www.columbiamissourian.com/stories/2009/08/14/local-man-fixing-problems-chairs-one-soul-seat-time/
One of these wonderful seats may be heading to Omaha real soon - I need to get something else to use when working on the computer, and this looks as if it will do the trick. At $350, it is a bargain, especially if it helps me be more productive! Congratulations, Pack!
If you are looking to add a Soul Seat or two to your household, you can contact him through the Soul Seat website http://mysoulseat.com/home.html .
I need to start a blog roll on the right side for the creative folks that I now know: Jeanne Sather's beautiful Charmed Bracelets http://charmedbracelets.net/, Korean Cuisine's wonderful cooking blog http://korean-cuisine.blogspot.com/, and Pack Mathews' website http://mysoulseat.com/home.html that he has for his great Soul Seat. If you hear of anyone else creating things, just let me know - I will post them here!
I happen to know the creator of the Soul Seat - a chair designed by Pack Mathews, in Columbia, Missouri: http://www.columbiamissourian.com/stories/2009/08/14/local-man-fixing-problems-chairs-one-soul-seat-time/
One of these wonderful seats may be heading to Omaha real soon - I need to get something else to use when working on the computer, and this looks as if it will do the trick. At $350, it is a bargain, especially if it helps me be more productive! Congratulations, Pack!
If you are looking to add a Soul Seat or two to your household, you can contact him through the Soul Seat website http://mysoulseat.com/home.html .
I need to start a blog roll on the right side for the creative folks that I now know: Jeanne Sather's beautiful Charmed Bracelets http://charmedbracelets.net/, Korean Cuisine's wonderful cooking blog http://korean-cuisine.blogspot.com/, and Pack Mathews' website http://mysoulseat.com/home.html that he has for his great Soul Seat. If you hear of anyone else creating things, just let me know - I will post them here!
Still casting a shadow
Lots of things have been happening around me as I continue to cast a shadow. Son was recently robbed at cocked gunpoint at work (he is doing ok); daughter is entering her freshman year at college (and asking for more money); family are all doing their things as they generally do; and Lucky the dog is practicing to be a cranky elder while remaining a two-year old at heart. Sending out end of summer good wishes to all - we will be knee-deep in snow before we know it.
Saturday, August 08, 2009
Adenoid Cystic Carcinoma research article
Just saw this article again, published April 1, 2009, and thought you might want to know about it:
Volker, H; Scheich, M; Berndt, A; et al. Expression of p-AKT characterizes adenoid cystic carcinomas of head and neck with a higher risk for tumor relapse. Diagnostic Pathology 2009, 4:18 http://www.diagnosticpathology.org/content/4/1/18 .
This is an open access journal, so you can read the full text. The scientists in Wurzburg, Germany studied tumor specimens from 29 patients to do this research. I like this understated sentence in the Background section: "The identification of tumors with a higher relapse risk seems to be interesting." Ya think?! Guess that is the 'distancing language' of the scientists, who must find it hard to work on such tough stuff day after day.
It would be nice to be able to know if my tumor was one that tested high for relapse, local or distant, but how useful is the knowledge? Not sure what they would do with that knowledge at this time, since it can take years for the cancer to grow back locally or in some distant region.
The collection of references on this article could be additional sources of reading for you or your health professional. This review article might be a good place to start for your family physician if they are not up on treatment of salivary gland cancers, for example: http://www.ncbi.nlm.nih.gov/pubmed/18402531. Remember that you can order full-text articles for a fee through most libraries listed at this directory in MedlinePlus: http://www.nlm.nih.gov/medlineplus/libraries.html
Volker, H; Scheich, M; Berndt, A; et al. Expression of p-AKT characterizes adenoid cystic carcinomas of head and neck with a higher risk for tumor relapse. Diagnostic Pathology 2009, 4:18 http://www.diagnosticpathology.org/content/4/1/18 .
This is an open access journal, so you can read the full text. The scientists in Wurzburg, Germany studied tumor specimens from 29 patients to do this research. I like this understated sentence in the Background section: "The identification of tumors with a higher relapse risk seems to be interesting." Ya think?! Guess that is the 'distancing language' of the scientists, who must find it hard to work on such tough stuff day after day.
It would be nice to be able to know if my tumor was one that tested high for relapse, local or distant, but how useful is the knowledge? Not sure what they would do with that knowledge at this time, since it can take years for the cancer to grow back locally or in some distant region.
The collection of references on this article could be additional sources of reading for you or your health professional. This review article might be a good place to start for your family physician if they are not up on treatment of salivary gland cancers, for example: http://www.ncbi.nlm.nih.gov/pubmed/18402531. Remember that you can order full-text articles for a fee through most libraries listed at this directory in MedlinePlus: http://www.nlm.nih.gov/medlineplus/libraries.html
Tuesday, August 04, 2009
Uneventful head/neck visit - now on yearly schedule
I visited the head/neck surgeon that has been following me since the fall of 2006 after my initial surgery and radiation, and he proclaimed me ready for annual visits from now on. Yay! (I have been seeing them every 4 months.) Nothing much going on in the head; the places that are sensitive, are still so; the places that hurt like crap, still do; and he wasn't concerned with the voice since that was first followed by the ENT down the hall, but did give me sympathy about how long it is taking to heal. His resident gave me a right going over, exam-wise. I figure the most good that can come out of all this crap - cancer, treatment, changing of one's life habits - is to educate others on it, so I pretty much demand that residents and students are to be present and participate, if they are on that particular rotation. They need to see first-hand the weirdness of an ear canal that doesn't produce regular cerumen (ear wax, if I spelled it correctly). They need to manipulate neck muscles that have been radiated and operated on, as they try to determine the status of lymph nodes that may or may not exist in that general area. They need to hear first-hand from a patient a bit about how they are coping and doing since the diagnosis and treatment of cancer. Learning by doing is about the best thing we have going for the health care profession, and I haven't seen a simulated patient yet that can offer what this cheeky librarian can. Looking forward to my visit next August!
Wednesday, July 29, 2009
Pitting Cancer Support Organizations Against Each Other-Really?
I received an email yesterday from the communications manager of the Oral Cancer Foundation, asking for me to review the OCF on a website, so they would have a better chance to win the Cancer Fighters Award. Deadline is Friday for the reviews. Each review is counted as a vote on the site, and the organizations with the most positive reviews win the title of Cancer Fighter. I won't include the email message here - it has one of those disclaimers at the bottom that says the message is only intende for me, blah, blah. But I will name the site that is causing our great support organization to yank its members' tails and demand their participation: GreatNonprofits http://greatnonprofits.org . I checked out the site, and saw that they have already pitted the Religious LGBTQ groups against each other for the Pride Choice Awards. Another contest for the Green Choice Awards resulted in their first list of Best Environmental Nonprofits. Okaaaay. To my librarian side, the lists are just one hair above meaningless - results of those that took the bait and wrote a message on a website, with no way for the reader to know if the reviewer truly exists, or what the 'positive review' really means in the scheme of things, or how the review should lead the reader to be more likely to donate money to the non-profit. Our library could run one of these schemes: we could ask all of our health professionals (nurses, physician assistants, radiology techs, cardiologists, endocrinologists, family physicians, neurosurgeons, oncologists, healthcare administrators, billing specialists, security officers, environmental services, maintenance, other librarians - you get the picture, and the list is way too big and varied for this rant, and probably equals in percentages the number of cancer support groups for the MANY types of cancer) for their vote/opinion on what is the best information resource that helps them get their job done. The number of users is finite, and is not equal across the different professional groups - just like the number of cancer survivors/caregivers that participate in each of the cancer support groups. In our library, I would imagine that the resources for students would get the highest number of votes - we have many more students than professionals, just like most educational institutions. And security would be one of the smallest groups represented, even if 100% of the department voted. Depending on how well the chains are rattled in various cancer groups for the GreatNonprofits contest, I can bet that some of the top "Cancer Fighters" will include lung, colon, prostate, and breast cancer , with oral cancer not even making the top 10 - except that we in the oral cancer section of the world do tend to be more likely to toss our opinion around at times, and might vote more.
Ahem - back to my post.
I am not a marketing professional, but I play one at work, where I have been assigned to get the word out about our library and services, just as the communications officers get the word out about the cancer support groups, and websites get the word out about their content - all in order to get more visitors/customers. I have a problem when a website's content only exists due to coercion or contests or for money - it should be freely given, unbiased, without implying that if the person's nonprofit is not chosen with the most positive reviews, it is assumed to be lacking that special something. People needing consumer health information and cancer support shouldn't have to worry about their main sources of information support winning beauty pageants - they need to know the information on the forums is from actual people who actually experienced similar treatments and outcomes. (Note - sometimes, one needs to assume from the start that this is not the case until proven otherwise - after all, On the Internet, Nobody Knows You're a Dog). I am not totally knocking the GreatNonprofits website for their use of social media for their awareness campaign. I am knocking them for leading their viewers to believe that the reviews they find have more value to the viewers' useage and donation choices than the reviews really do. On their About Us page, they compare their reviews to restaurant review sites and the reviews found on Amazon. I understand when I read restaurant reviews that they could have been written by a competitor, or a brother-in-law (hopefully being negative and positive in nature, respectively) or a cranky customer that keeps coming in so they can write another bad review. As for the reviews on Amazon, well - in the past, some have been discovered to have been paid for (and how many weren't discovered?).
Bottom line: be an Internet skeptic with reviews as well as other activities you do on the 'Net. Research the support and information resources available to you, hopefully with the assistance of a librarian. Evaluate the support and information you receive from the website and the forums. It is so hard to do when a person is desperate for any information in the crisis situation of being newly diagnosed or a loved one diagnosed with mets, but a part of you must remain skeptical of the information you locate until you can check it over with your health care professional. The Oral Cancer Foundation had information on it that saved me during treatment three years ago, and still is a high quality site. Their site has excellent content, managed forums, and are worthy of donations on their own merit. They do not need to participate at all in the GreatNonprofits hoopla to get noticed, in my opinion.
If you are looking to donate your hard-earned dollars, let your local librarian know if you really want to scope out a good nonprofit - we can help you get to the source of unbiased ratings/reviews.
Ahem - back to my post.
I am not a marketing professional, but I play one at work, where I have been assigned to get the word out about our library and services, just as the communications officers get the word out about the cancer support groups, and websites get the word out about their content - all in order to get more visitors/customers. I have a problem when a website's content only exists due to coercion or contests or for money - it should be freely given, unbiased, without implying that if the person's nonprofit is not chosen with the most positive reviews, it is assumed to be lacking that special something. People needing consumer health information and cancer support shouldn't have to worry about their main sources of information support winning beauty pageants - they need to know the information on the forums is from actual people who actually experienced similar treatments and outcomes. (Note - sometimes, one needs to assume from the start that this is not the case until proven otherwise - after all, On the Internet, Nobody Knows You're a Dog). I am not totally knocking the GreatNonprofits website for their use of social media for their awareness campaign. I am knocking them for leading their viewers to believe that the reviews they find have more value to the viewers' useage and donation choices than the reviews really do. On their About Us page, they compare their reviews to restaurant review sites and the reviews found on Amazon. I understand when I read restaurant reviews that they could have been written by a competitor, or a brother-in-law (hopefully being negative and positive in nature, respectively) or a cranky customer that keeps coming in so they can write another bad review. As for the reviews on Amazon, well - in the past, some have been discovered to have been paid for (and how many weren't discovered?).
Bottom line: be an Internet skeptic with reviews as well as other activities you do on the 'Net. Research the support and information resources available to you, hopefully with the assistance of a librarian. Evaluate the support and information you receive from the website and the forums. It is so hard to do when a person is desperate for any information in the crisis situation of being newly diagnosed or a loved one diagnosed with mets, but a part of you must remain skeptical of the information you locate until you can check it over with your health care professional. The Oral Cancer Foundation had information on it that saved me during treatment three years ago, and still is a high quality site. Their site has excellent content, managed forums, and are worthy of donations on their own merit. They do not need to participate at all in the GreatNonprofits hoopla to get noticed, in my opinion.
If you are looking to donate your hard-earned dollars, let your local librarian know if you really want to scope out a good nonprofit - we can help you get to the source of unbiased ratings/reviews.
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