2 additional links added

If you are experiencing or supporting someone experiencing cancer, you might be interested in a cool blog that I discovered Sunday: The Assertive Cancer Patient http://www.assertivepatient.com/. Written by Jeanne Sather, this blog seems to me to be full of good information to consider for anyone concerned with living with cancer. Check it out!
The other link I have added is to the Adenoid Cystic Carcinoma Organization International http://www.orgsites.com/ca/acco/. They have an information group hosted on Yahoo Groups that you should really subscribe to, if you have ACC.

An oh so sweet Thanksgiving

We travel to the moms today, and will join our family in giving thanks for our many blessings. There are some new thanks on the table this year: I am thankful for every card, note, email, smile, encouraging word, hand shake, hug that I have received while going through diagnosis, treatment, and recovery (yes, if all you did was smile at someone living with the words "you have cancer" ringing in their ears, you did so much!); I am thankful for the skilled health professionals, especially the ones that, when I asked questions, admitted that they didn't know for sure but would look it up (I think most patients require expert humans on their care teams, not automatic robots! -grin!); I am thankful for technology that not only allowed my treatment and recovery, but kept me connected with my source of support-friends; and I am thankful for a strong mother that raised me to be strong in the face of whatever life has in store. I like the proverb at the front of Ted Kooser's book, "Local Wonders":
When God wishes to rejoice the heart of a poor man, He makes him lose his donkey and find it again.
Today, I rejoice and am thankful that I have found my donkey!

Successful visit to the dentist - first since radiation

I went to the dentist yesterday for a cleaning and post-radiation assessment. Thanks to my great dentist and her crack team of hygienists and office staff, I managed to come through radiation and the side effects with only 3 small surface cavities. I was actually very disappointed that they found *any* cavities, but evidently all the proactive care I have been doing has paid off, keeping my teeth relatively strong and in my mouth for the moment. Since my face still hurts on the outside, and knowing that dental professionals like to brace on chin and cheek while they are maneuvering their cleaning tools (think mountain climbers!), we took time at the first of the appointment to identify sensitive areas so all could be avoided during treatment. The hygienist gave me ample opportunity to wet my mouth (yes, the water bottle accompanied me to the appointment!) Also, since I have some muscle weakness on my left side of the face, at times someone (me or the hygienist) was keeping my lips out of the way of treatment (made me wish I could sneer like Elvis!). X-rays, cleaning, polishing went just fine. The only thing they didn't do that I think they usually do was floss my teeth at the end of the cleaning. My dentist had provided me with a prescription for antibiotics before the appointment, since the goal is to avoid infection in my highly-radiated jawbone. The American Dental Association is pretty clear on when preventive antibiotics should be used: http://www.ada.org/public/topics/health_oral_faq.asp.
I wish everyone could have the dental team that I have, and I am grateful to them for keeping me on as a patient, even though I am probably a 'special' case for the moment. My advice for you, if you are facing radiation to any part of your head or neck, is to go first to your dentist and get a thorough check up and some preventive care to carry you through the radiation treatment and beyond. Good teeth and quality of life go hand in hand.

Another day, another medical procedure

Even though I was diagnosed with cancer, that doesn't get me off the hook for other cancer screenings - in fact, my team has been searching for other sites that the cancer (or other cancer) could be growing. Everything-all of the screening results- has turned out just fine.

(Warning - I haven't talked much about emotions on this blog on purpose, but this time on purpose I am discussing emotions.)

I went through the mammogram and other female screenings just fine, joking with the technicians and specialists that they weren't allowed to find any cancer this year because my ticket had been punched. But I broke down completely when waiting for the colonoscopy yesterday. Not because I feared the procedure - heck, I knew they would knock me out so far that even if I did tell state secrets, I wouldn't remember it. What made me sob so hard was sitting on the gurney in a gown in that same outpatient prep area, and realizing that just a few months ago I had done a similar thing, but woke up looking and living completely different. I guess I was mourning my loss of "normal life" all over again. I hope I don't have that flashback each time I have to have a procedure done in that outpatient area- maybe this time put that demon to bed - but it sure surprised me that it happened at all. There has been recent news about breast cancer survivors that experience 'serious distress', even symptoms of Post-Traumatic Stress
Disorder
http://www.nlm.nih.gov/medlineplus/news/fullstory_41297.html. Maybe I was going through some of that - who knows? I will be sure to discuss this episode with my GP during my follow-up visit. Just in case you run into overwhelming feelings, check with your doctor. Additional information on Normal Adjustment and Adjustment Disorders is available through the National Cancer Institute
http://www.cancer.gov/cancerinfo/pdq/supportivecare/adjustment/patient.
This is probably the time for me to rejoin the support group for a while, too. I am reminded about the TV show, Murphy Brown
http://en.wikipedia.org/wiki/Murphy_Brown, when the lead character has been diagnosed with breast cancer. One recent rerun showed her freaking out a bit at work after the cancer diagnosis, where she thinks no one she worked with understood what she had to go through each day just to get things done. Finally, due to her colleagues' urgings, she attends a support group and finds kindred souls that may understand and might offer tips and tricks for her to cope with life after diagnosis. I figure it is time for me to seek out similar kindred souls... If you are looking for support groups, check with MedlinePlus.gov to see if support services in your state are listed under the Go Local box on this page:
http://www.nlm.nih.gov/medlineplus/
cancerlivingwithcancer.html. You could also check for support group contact information on association web pages, such as Support for People with Oral and Head and Neck Cancer http://www.spohnc.org/.

Getting through the days

Like the lyrics say in Jackson Browne's song "The Pretender", I find myself getting up and doing it again, going to work each day. I am so glad to have a job, and the folks I work with understand my half-day schedule (half-days due to fatigue still hanging around). Some of the items I have found useful to get to and from work with are:
-an umbrella (if it is warmer than 50 degrees outside), to keep the sun off my head and neck. The hats worked in the summer, but now the sun is so low in the sky a hat just doesn't cut it (unless I go to the beekeeper's bonnet a good friend suggested earlier on this blog!).
-bottled water! On my second day back, I went tra-la-la to a meeting in another building and forgot the bottle of water on my desk. Lucky for me, there was an oasis in the form of a colleague who stored water in her file drawer, so I was saved. One bottle of water per day, and I refill it at the fountain when I need more. Don't save them for more than one day, though - there is research on how nasty those bottles get if you try to reuse them long-term!
-a home-made scarf. When the temps are lower than 50 degrees, I use a scarf I made with a yard of thin fleece material. It is heavier than a dressy scarf, so it insulates against the sun's heat that comes through the car window (sun equals burning sensation, folks - I have extreme motivation to keep my radiation site covered). The scarf also cuts the cold wind that for some reason blows most of the time here in Omaha. The fleece doesn't require any hemming (unless one would want to hem it),and is washable, so I can get the burn cream out in the wash. I carry it whenever I leave the building on cold days - it may look weird, but I am coping the best way I can. Besides, we all need that conversation opener, right?!
-small spot mirrors on my car's outside rearview mirrors. Yes, I am still exercising my neck each day, but these little doodads help while in traffic. Any increase to field of vision is a good thing.

Now that I am meeting up with folks that haven't seen me in a while, I am getting used to people looking at my face to see how it has changed. I don't mind - I know they are caring how I am doing. But the people on the street that tend to stare need to check out this really cool site created at the University of Michigan: Let's Face It http://www.dent.umich.edu/faceit/. Take a look at it yourself, and share with your boss/human resource director/healthcare provider. There is a lot of support information there for anyone that has a facial difference, or that knows someone that is experiencing being different. I really like the quote on the first page:"To support a person with facial difference, look them in the eyes and smile at them". Good advice!

Taking the plunge into the future

To celebrate my return to the working life (and today went very well as a first day, thank you!), and to mark my faith that I will be continuing to work for many more years, my husband and I made a large purchase to improve our home - a new furnace/heat pump! Yep, long warranty and everything! I don't want to ever get into the pattern of living just until the next check up, or worrying what cancer will take away from me in the future - so this is as proactive as I could get. It was a good bet that the old furnace would pick some 40-below night to quit on us, so installing it in the daylight was much easier on the crew. Plus, it really cozies up the place now that we are having winter temps at night. Just because you have cancer doesn't mean you are not allowed to enjoy life anymore. Heat and running water are tops on my enjoyment items, so it may be the plumber I call next!