Monday, June 25, 2007

The reason there is a Ninja Librarian

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

Avoiding sun exposure to the treated area can be long term

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

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

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

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

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

Friday, June 22, 2007

One year with adenoid cystic carcinoma

Tonight, I pass the one year mark since my surgery. It would be a week later when the surgeon would tell us it was cancer, and what my treatment options were. A lot has happened in this year - a lot of good, with some bad tossed in for character-building. I am glad that I am still casting a shadow, and acting as a participating tax-payer in this society. I miss some of the things that will be gone for good, but relish the new opportunities and experiences that fill my days now. Most of all, I hope that this record of my year is of use to anyone facing cancer, particularly adenoid cystic carcinoma.
This isn't a good-bye message, just one marking time. I still face new issues that are uniquely due to having cancer, and I figure I am not alone. I predict that other issues will crop up. Plus, with this type of cancer being rare, the more of us that get together, the more chances we have of getting the attention of health professionals interested in this disease. Right now, I would welcome being a guinea pig for someone's research - at least I would know there was a good outcome of my having cancer.
If you are new to this blog, scroll down the page and start reading from the bottom. If you are newly diagnosed with cancer, please contact your local medical or public library for help in locating information - you really don't have to search the Internet on your own. If you are a seasoned reader, thank you for bending your eyes my way over this past year. I couldn't have made it as far as I have without all the support I have received. It may sound maudlin, but I feel like I have been to my own funeral - you know, when they say all the good things about the person that has died. I am lucky, since I have heard them while I am still kicking. I plan to pass along that gift to others, and not wait until it is too late to say the good things.

Thursday, June 14, 2007

Beware the Ninja Librarian

Watch out for the Ninja Librarian in a library near you!

Can you have cancer and be happy? You betcha!

Jeanne, author of The Assertive Cancer Patient (one of my sidebar links, and a recommended read for everyone!) has asked a circle of cancer bloggers to write about being happy despite, or even because of lacking some of the "health" part of the "health and happiness" that most folks wish for. As I drove around eastern Nebraska yesterday, visiting 5 of the 270 great public libraries that grace my state, I thought about what happiness means to me, and if my definition has changed much since cancer has come into my life. I think I have returned to the things that made me happy when I was 12 - petting my dog, riding my bike, talking with my girlfriends, reading good stories, dreaming about the future, and watching the stars at night. The things that are different now are: my dog gets to stay inside, and doesn't have to be an outside dog (Mom, you really missed the fun of wrestling blankets from under 70 lb of dog!); my bike has tassels; my girlfriends live all over the world (man, what we could have done with email back in the 7o's!!); I get to read books with the really good words in them without having to hide the covers with brown paper wrappers; my dreams about the future include my husband and kids; and I can watch the stars at night way past Tonight Show-time, if I wanted to. In addition to these things of happiness, I have the legal ability to drive a car with the windows down on a warm summer night and sing with any or all songs on the radio if I want to.
If the 'dreaming about the future' item made you pause, it shouldn't have. Just because I caught cancer, just because I went 30 times behind the big door to the radiation room where no one else goes with you, just because I can no longer enjoy the nuances of a good shiraz or my mom's fried chicken, just because I flinch from a sunbeam like Dracula - all that and more doesn't mean I stop dreaming about the future. I still wonder what I will do if I ever give up being a librarian and become the next superhero. I think of seeds that have been planted in projects that I have taken part in or classes that I have taught, and I wonder where and what form those seeds will grow. I pass by the many areas of construction in my neighborhood, and dream about the buildings that might rise against the sky someday. I watch the cars that drive the same paths created by the prairie schooners so many years ago, and dream about what conveyances will be passing the same way years from now. I listen to the financial channel in the mornings, and dream about how my baby-sized 401K is going to be doing this time next month...
Thanks to this cancer episode, I have met the kindest, smartest, most creative, and most giving people, and they have all made me happy to be around them, near them, or just know that they exist on this earth at the same time I apparently do. That fact, and those 12-year-old happy things more than make up for the things I used to like to do but can do no longer. Here's to happy times for us all in the moments ahead.
And here are links to the other stories that I hope you visit:
Happy Days
Health and Happiness
The Jar of Rocks
This one's for Jeanne
Health and Happiness
and more to come...

Wednesday, June 06, 2007

My weird diet

This is recorded for those that might be experiencing similar problems in the food department. But don't expect gastronomic thrills!
I think I have gotten used to my lack of tasting food. I enjoy the crunchy things (shredded wheat cereal, nuts, cucumbers, raw zuccini and green peppers), can handle cooked beans or mixed vegetables, but still no meat. My new snack - green pepper strips or sliced cucumber. I have developed a fondness for whipped light cream out of a can for a 'dessert' (shoot it in a bowl and spoon it up - go figure), which gives me a bowl of my own when the family does sundaes. If I get to say my preference for a lunch menu at business meetings, it is milk. We stopped at a chain restaurant the other day (like a Perkins or a Denny's), and I tried their blintzes with blueberry sauce and sour cream - it worked, but I am not sure if I will ask for it again - that was a whole lot of fat with the cream cheese and sour cream. The crepes worked very well, so Rick fixed me some at home last night, with over-easy eggs. If a bready item is greased or sauced up sufficiently, it can be consumed - but at some point, I have to decide if it is worth the effort. Rice and pasta are nasty most of the time - kind of little slime balls with no flavor. Now I know why a toddler gives the faces they do when they try new foods - they must be affected by the different textures as well as unfamiliar tastes.
I still can't stand spices outside of salt. I had some green beans that had been cooked with pepper at a restaurant, and the mouth tingled for the rest of the night. I was foolish last week, and was determined to see if the nacho cheese dip tasted or not, and licked some (a tiny bit-honest) off my finger - pow! Was like a mouth full of salt (no cheese flavor turned up) dipped in Tabasco. Ok, ok - I am a believer once again. For that reason, I still haven't gone in for any tomato or citrus foods - figure the acid will be too much for the sensitive mouth. Same goes for the alcohol - haven't tried it yet, doubt if I will. I have had nearly a year without caffeine drinks of any type, but I still love to walk by the coffee cart at work and just smell the goodness.
I have tried cheesecake, unfortunately with success in the texture department. I guess an old trigger food can become a new trigger food, for different reasons, so I have to watch that one in this life, too. I don't care for pudding or ice cream any more, and of course, Godiva and the other chocolate companies are calling my house to complain about their lack of sales. Fast food commercials just pass me by - they know I am no longer in their pool of potential customers. Cheese = rubber. Hamburger - has to be dunked or chewed with lots of liquid, so what is the point? I haven't tried watermelon after last summer, but I have tried small bits of honeydew - sort of works. The best restaurants are those with buffets or big salad bars - I can go and pick and choose, and have a normal night out with the family.
If I ever wrote a cookbook for those of us lacking sense of taste, I would include a lot of whole grains, beans, and nuts to chew on. Go for the textures. Maybe make the cover out of burlap...

Saturday, June 02, 2007

Clinical trials looking for ACC patients

While I undergo another round of tests (yep, the doctors are still looking for aliens!), I started to wonder what clinical trials are out there for folks with my kind of cancer: adenoid cystic carcinoma. Looking at ClinicalTrials.gov, I found 11 studies currently recruiting patients in all stages of disease. Take a look if you or someone you know are in the fight to cure this stuff:
http://clinicaltrials.gov/ct/search?term=adenoid+cystic+carcinoma&submit=Search.
 
Who links to my website?