Sunday, August 31, 2008

Any Ninja Librarian sitings on your highway?

I just spent 24 hours in Kansas, turning heads on the way down and back while riding in the Cheekymobile and wearing the Ninja Librarian hat (the sun, it do burn when it shines.) Only gave minor heart attacks to two convenience store cashiers on the 500 mile round trip - the Cheekymobile is cheap on gas, luckily. Both cashiers recovered nicely from the shock of having a hooded figure walk through their doors. Had a great time in Kincaid/Garnett area to celebrate a special lady's 75th birthday, though spent too short a time with her. If I could just develop that teleportation machine...yeah, that's the ticket. Of course, I would want the version which would deliver me at my destination as a size 10.
It is so nice to celebrate life, and family, and friends. I told my friend that I was so happy that she was born - thanks to her being on Earth, I have a larger circle of family in this life, and love every one of them (particularly her daughter, whom I have known since 1976, meaning that we both have enough dirt on each other that we can never run for public office!) If you have a chance to celebrate life this weekend, run - don't walk - and go give and receive hugs and smiles. If you can't go, make them come to you (Follow Queen Elizabeth's example - make them come to you!) I get to do more celebrating life (more of the richness that I soaked up this weekend) when I visit Sedalia and see the moms on Sept 13 (watch for the Ninja Librarian on I-29 and I-70 - can't miss her!) Number one daughter is going to Missouri to take the ACT (for some UNKNOWN reason, Nebraska isn't giving that one, so we go where we need to), and number one son has the weekend off as well, so we will go see grandmas/moms (maybe even some aunts, uncles and a great-grandma). I am sure the weekend will involve lots of smiles and hugs, and memories to carry on for the year ahead.

Monday, August 25, 2008

My own update

It has been two years since I went through the operation, diagnosis, and the beginning series of radiation to get rid of ACC. If you are a new reader of this blog, head on down the page and start from the beginning. I tried to truthfully record my experiences and how I dealt with the side effects of treatment - I hope my words offer you some assistance on your own path.
As for me today - I am working full time as an academic medical librarian. Still can't taste much but have gained weight (I should be a size 3 for giving up meat, chocolate, and alcohol!! Meat - nasty beyond description; chocolate - like a crayon; and alcohol burns). Can't handle spices, not even black pepper (after talking with Dan from the Seattle area, this is most likely permanent.) Have good strength, thanks to the whey protein drink (still do one of those a day, to make sure I have protein levels up.) Some pain on the left side of my head where I was radiated, and some up over my left ear where I am missing the piece of skull they took out in November, but dealing with the pain is part of the ownership negotiation for a cancer patient post-treatment. I see the head/neck folks every 3 months (next visit is tomorrow), and the radiation oncologist every 6 months now. (My one rule about agreeing to see the doctors so frequently - there needs to be students/residents present - can't waste a rare cancer like this one.) I still cover up from the sun, but thanks to that habit to avoid pain, my scars are faint and nearly invisible (thank you, Coolibar.)
If you are a new visitor and have or know someone who has been diagnosed with ACC - know that you are not alone. Yes, this is rare. But not so rare that there isn't someone who might have experienced something similar to what you are going through. Let me know if I can get you in touch with some of those folks, or if you would like to know how to get a contact that would help you locate research information on this cancer.

Adenoid Cystic Carcinoma in the news

A story in the Daily InterLake about Tina LeDuc from Montana and her fight to get coverage for health care during treatment for ACC:

In the fight of her life, by Candace Chase
http://www.dailyinterlake.com/articles/2008/08/25/news/news01.txt


I am not sure universal health care would have solved her problem (I know too many bad stories from the UK and Germany about folks getting caught in care rationing or waiting for care past the point of usefulness), but something has to be done about getting coverage for healthcare.

Tina has a web site of her own: http://www.castlethornsoftware.com/TinaLeduc/. There is a comment board - send Tina some good words as she continues on her treatment path to get rid of ACC.

Sunday, August 24, 2008

New FAQ on Adenoid Cystic Carcinoma at ACCRF

The ACC Research Foundation has published a new FAQ that may be useful if you or someone you know is newly diagnosed with Adenoid Cystic Carcinoma:
http://accrf.org/html/faq.php
Take a look at it and see if it helps answer some of your questions. This page is the result of at least three volunteers that worked together to get it up: Dan Dube', Kara Gelb, and myself. We are currently working on getting a reputable table of statistics on this rare cancer - stay tuned!
Also, feel free to send me a comment through this blog, if I can be of assistance as a patient that has experienced one form of Adenoid Cystic Carcinoma and its treatment. None of us are total experts on this disease - sadly, not even health professionals - but if enough of us communicate, we just might get a handle on it. (The comments sent through this blog end up in my email box before being published, in case you wonder where yours went after you sent it.)

Sunday, August 17, 2008

We lost another cancer warrior

I found Leroy Sievers' blog right at the time I was diagnosed with Adenoid Cystic Carcinoma, and have read it ever since. I felt kicked in the gut when I read this yesterday:

Journalist, 'My Cancer' Blogger Leroy Sievers Dies
http://www.npr.org/templates/story/story.php?storyId=92028479

Rest in peace, brave warrior.

Monday, August 11, 2008

More about hospice care - from someone who knows much more than I

Thank goodness for Dr. Wendy S. Harpham's comment on my previous post about hospice care. I admit that I am pretty pragmatic about things - after all, when facing possible removal of my left ear, I was already scouting out sources that could create snap-on ears for each holiday (bling, I want bling, if I can't have the real thing). I approach my palliative care plan the same way and expect my caregivers to respect that viewpoint. However, I know that is not how everyone views their personal road. I am putting Dr. Harpham's comment here, so you can easily find the wonderful information she shares (I added direct links to the resources):

"I appreciate your perspective and advice. But your comments make it sound like hospice is just another practical decision in life.

Hospice is a highly-charged emotional word and concept. Many healthy people - and I venture most people who are newly diagnosed with life-threatening illness - do not want to think about hospice, let alone discuss it.

I am a vocal advocate for hospice care. In order for patients and their families to optimize use of this healing service, we need to acknowledge and address the understandable emotional obstacles to considering or accepting hospice care. The NPR blog by Leroy Sievers has been a prime example of struggle.

I wrote a column about hospice for professionals in oncology that can be accessed at:
http://www.oncology-times.com/pt/pt-core/template-journal/oncotimes/media/WendyHarpham-H%20Word-OT-Dec252006.pdf

With hope, Wendy"

Added August 12, 2008 - Here is a link to Leroy Sievers latest post regarding his decision about hospice care and the over 100 comments on it: http://www.npr.org/blogs/mycancer/2008/08/a_decision_made.html#commentSection (cheeky)

Sunday, August 10, 2008

In case you are considering hospice care

Did you know that I once worked for a multi-disciplinary rural hospice? I think it was the only one in the nation at the time (early 90's). I learned about the new duties while I was at an MCMLA (medical librarian) meeting in Colorado Springs, during a break when I called back to the office to find out if I had any messages - what a way to learn about a complete job change! Anyway, since those days, and because of some personal experience with family members and close friends who have used hospice, I have always told folks to consider it when the care involved when living with a life-threatening illness gets to be too much. Personally, I plan to outlive hospice - I don't want to sign up for hospice 3 days before I die, in other words. The service and care that hospice professionals offer frees up the family members to REALLY spend time with the person who is ill, and to pay attention to the important things that need to be done and said those during those special last months. Last thing I want is my loved ones worrying about stuff that a hospice professional can take care of, instead of us talking together.
Information about hospice can be found here: http://www.hospicenet.org/. There are in-patient hospice centers around, in case you need one - check with your doctor. The best one in the world, in my opinion, and one that I had the honor of visiting, is the San Diego Hospice: http://www.sdhospice.org/. And, speaking about your doctor - you might want to check early as to their personal view of hospice, since they are the ones that can sign you into one. If you have a doctor that doesn't believe in the usefulness of hospice, or might actually have something against hospice (viewing it as 'giving up', for example), you might want to change doctors, or be very clear on your wishes from the start. The saddest stories I hear are the ones about people experiencing terminal illness, and they get placed in hospice the day before or two weeks before they die. I am glad that they went at all, but all of the wonderful support that hospice offers was never offered to them - what a shame.
I have a few more end-of-life topics that I will be posting on. No, this isn't any hint on my personal health information - I am doing fine. I just know that some things are too important not to talk about, even on a blog.

Adenoid Cystic Carcinoma in the news

Tim Pearson, resident of New Zealand, is featured in the Sunday Star Times in an article written by Karen Kotze: Death verdict held by lust for life http://www.stuff.co.nz/stuff/sundaystartimes/auckland/4646971a6016.html. Even though his ACC has progressed dramatically, Mr. Pearson keeps his sense of humor and love for life and his family. As a fellow ACC fighter, I thank him for sharing his strength with the rest of us, and wish him the very best. Should I come into a pot of money in this life, I would love to start sending checks out to every person diagnosed with ACC - this man should be able to have his cable tv, for goodness sake!

Ninja Librarian is back

I am very disappointed that I am covering up again, but I couldn't hack the pain of the sun hitting my neck, even when wearing my big floppy black hat, and the pashmina knock-off was rubbing my skin raw (I am such a weenie). I bit the bullet and pulled out the Coolibar hat from the closet. Lucky for me, my family is not embarrassed by my head coverings (probably by other things I do, but not what I wear on my head!) Face it - I am glad that I had the smarts to buy the ninja hat when I saw it. It has been a life saver, and still allows me to drive around and go out in the sun.

I went looking on the Coolibar site to find the link to the hat, but I don't think they sell it anymore. They do sell a face drape that would fit under any hat: http://www.coolibar.com/01009.html . They also sell a Shade Wrap, which might be easier on my skin than the woven pashmina scarf: http://www.coolibar.com/01011.html . Big sale going on now at their site - if you are in the market for sun protection clothing (and who isn't, these days?), give it a look-see.

Saturday, August 09, 2008

The place to be on Sept 6 is Mokena, IL to fight ACC

Attack ACC's 2nd Annual 5 mile Walk/Fun Run will take place on Sept 6 at Hickory Creek Junction in Mokena, IL. More information about the walk can be found on this page: http://www.triblocal.com/Orland_Hills/Detail_View/view.html?type=events&action=detail&sub_id=25822 . Attack ACC was started by Alicia Almanza's daughter - what a tribute! Here is a map to Mokena - let me know if anyone is taking a bus, because I just might ride along! Thinking of you all -Cheeky.

Sunday, August 03, 2008

More about money

On the night of September 5th you may not want to be watching CBS, ABC, or NBC, if you want to avoid a show about cancer. Stand Up To Cancer will be on then, 8pm et/pt. Here is the web site:
http://www.standup2cancer.org/. I just found the site, and am still trying to find out where the money goes after they raise it. They have a shopping site - but I couldn't get it to open up (if it is open yet), so I don't know what they are selling. There is a contest to be present among the celebrity phone bank that night (I guess they could have just gone to the local ACS office and rounded us up to do the work, like folks do immigrant day laborers). And there is a Launch a Star area, where (this is heartbreaking to me) folks can buy a star and put someone's name on it, adding to the Constellation. That is a group I sure don't want to be among - I don't want to be 'remembered' at any Relay for Life, either. There are already stars purchased in the constellation, but I didn't check them to see if I knew anyone. 12,000,000 of us in the US have had cancer diagnosed - I am not sure they have big enough servers to put all those names in. And I would rather you spent your dollar on something else locally. Look around - your community has human service agencies that support folks with chronic conditions - donate there. Look around your neighborhood and church - someone that is going through cancer treatment could use some concrete help. Take their kids to soccer practice or bring dinner by for the rest of the family. Buy a gas card for someone making daily visits to radiation or regular visits for chemo. Visit your local cancer research center and bring pizza for the hard working researchers, so they can concentrate on the life-saving work instead of their growling tummies. (Now THAT is a group I would like to champion in a tv show or big screen movie - the scientists that too often anonymously manage herds of mice and microbes, running clinical trials on humans, hunting for that answer to either better treat or cure cancer.) I just don't know what celebrities are going to do to actually get money to the research labs. Their press releases http://www.standup2cancer.org/theshow/press don't address the funding pipeline question (hope that money will be raised, but it goes where?). There is a great section about emailing congress to increase funding to NIH http://www.standup2cancer.org/getinvolved/congress - I am glad that they put that in there. Backing for the program seems to be from the Entertainment Industry Foundation http://www.eifoundation.org/, with a grateful thank you to Ken Ziffren, a prominent Hollywood lawyer. Congratulations for them getting some anti-cancer entertainment together in this dark fall TV period resulting from the writers' strike. My heart will be with all present and viewing that have been touched by cancer personally. But I am not sure how much all of the hoopla will impact me or other cancer fighters. Question - what commercials are going to be run during a special like this? The mind boggles.
(added August 17, 2008 - cheeky) Ok, I know more about this fund-raising effort as the days go by, and it is starting to look better than it did at first glance. I recently located additional information on how funds raised by the SU2C effort will be used at the American Association for Cancer Research site: http://www.aacr.org/home/public--media/stand-up-to-cancer/grant-giving-model-su2c.aspx. Submit your ideas if you have a plan for a "Dream Team". I wish the fund raising effort and future projects that come of it all the best.

Admit it - it is all about the money.

Money - cancer eats it like it eats into our bodies. Millions of people around the world donate money for cancer, but the money usually goes for research, not to the individual patients. Research is necessary, but I pray for the day when cancer patients - people currently undergoing treatment and life-wrenching decisions - don't have to have spaghetti fund raisers or bake sales or pawn their possessions to pay for the humongous costs involved with treatment.
I was blessed with a good job, good insurance (a benefit I considered years ago during my job interview before even salary amount, thank goodness), a lower standard of living, and very generous friends, so I kept my house, had transportation, and wonderful emotional support. Not all cancer patients are that lucky. I have learned of a woman through the Assertive Patient blog that is in need of money. Here is the link to her story, which links to a PayPal account should you wish to donate directly: http://www.assertivepatient.com/2008/08/send-money-an-o.html.
I don't want her or anyone else to wait on donations from strangers, so I went out hunting down sources of financial help. I didn't find many.

Since the woman in this instance has a small child, I figured Medicaid might also come into assistance (the story says she is already on disability). She could check here:
http://www1.dshs.wa.gov/. Interesting that the Washington state DHHS slogan is "People helping people". I sure hope that is true.

Here is a page of links at the National Cancer Institute that may or may not be helpful. Hey folks, if any of these web resources don't link to enough information, please give them feedback and ask for more specific links - humans are on the other end of most websites, and they need to know if they are providing a good service or not. http://www.cancer.gov/cancertopics/support.

The American Cancer Society helps a bit, but I think only while you are in current treatment. http://www.cancer.org/docroot/MIT/content/MIT_3_2X_Medical_Insurance_and_Financial_Assistance_for_the_Cancer_Patient.asp

The patient information site by the American Society of Clinical Oncology lists some links for financial assistance. (They should - it is in their best interest to make sure we can pay for their services, folks.) http://www.cancer.net/patient/Library/Cancer.Net+Features/Financial+Support+Resources. The page hasn't been updated since 2005, though, so I won't hold my breath that there are actual helpful links there.

There is an assistance page at the CancerCare website: http://www.cancercare.org/get_help/assistance/index.php.

The National Coalition for Cancer Survivorship is pretty silent about actual service points for financial assistance - interesting, since that is probably the BIGGEST issue for survivors: http://www.canceradvocacy.org/.

The Patient Advocate Foundation offers personalized assistance, so they may be able to identify other sources of financial help (someone let me know if that is true - not apparent from their website): http://www.patientadvocate.org/.

Thanks to Whitney's reminder to me (her comment is attached to this post), please remember that in some of the larger communities, you can contact 211 and ask for help in locating assistance and support. You can locate your 211 call center on this page: http://211.org/ReferWeb/MainForm.aspx.

Of course, anyone facing cancer or having survived cancer should talk with the social work department of the hospital where they received care, and ask for direct assistance with locating financial support. Don't just let them hand you a big binder of information - sit with them and go over the options in person. Heck, if we could figure out what sources exist, we would have done it on our own. Keep the social workers employed, and ask them to focus on your personal situation. That is what they went to school for, after all.

This search for and collecting continuing financial support sources for cancer survivors and their families, REAL financial support, appears to be a great grant opportunity for someone. With nearly 12,000,000 cancer patient survivors out there in the US, a lot of us need financial support even AFTER treatment - we shouldn't have to cobble sources together on our own. We need to demand those that currently collect and disseminate financial information related to in-treatment issues to do the same for after-treatment support. The need for financial support does not end the last time you go behind the radiation door (where no one else goes with you), or when the last round of chemo is taken. It is ongoing. And with us living longer after treatment, it is going to be an even larger issue. As I said, cancer research needs money to continue to make headway - but survivors need potentially a dollar-for-dollar match to those research funds to get back to living after treatment. Can you imagine what it would be like if on the day you were diagnosed with life-changing cancer, they cut you a check for the anticipated out-of-pocket costs related to being a cancer survivor for the next 10 years? You could create a fund like a 401k to keep up with the extra costs, particularly if you aren't able to continue working, and keep your head above water/sleep well at night/heal without worry. Yeah, I would like to see that happen.
 
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