Adenoid Cystic Carcinoma again in the News

August 29, 2007

A story about a walk-athon for ACC: http://www.masslive.com/metroeastplus/republican/index.ssf?/base/news-3/118828704193830.xml&coll=1

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

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

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

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

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

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

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

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

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

Having Adenoid Cystic Carcinoma makes one fearless

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

News that we have lost a fellow Adenoid Cystic Carcinoma fighter

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

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

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

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

Cancer in the comics

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

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

Best to face cancer with a dog at your side

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