Look out, I just might be playing in the sun soon!

One of my holiday gifts arrived in today's mail, and I can't wait to try it out. My husband had seen a woman driving in what he described as "a Darth Vadar or welder's helmet", and he thought it was something I might be able to use to get around town in the daylight. He searched on the web, and located this product: FaceVisor http://www.facevisor.com/. I ordered a full shield , figuring it was worth a try. The return address on the package today showed Canada, and the shield is made in Korea, so it has been around before reaching me (grin!) The shield goes just to my ear (the glasses do interfere a bit with the shield going flat down over my face), but I have hopes that it will give me some relief while driving in the winter sun. I also hope it will allow me to ride a bike this spring & summer - I have been saving up for one of the Electra Townie's.
I had asked about UV protection at the dermatologist's and the radiation oncologist's offices, but no one had mentioned a shield (they basically said to stay out of the sun). Since using sunblock cream right now is still out of the question (I break out if I use anything other than Cetaphil cream), this shield will hopefully keep me protected.
Another couple of products that I have seen lately are hats - one at Coolibar http://www.coolibar.com/02512.html, and another at Gaiam http://www.gaiam.com/retail/product/04-0348_MSTR. I may be getting one or both of these as well, since my needs will change over the year to come.

That other thing we are certain of - taxes

I read on a discussion list that 200 Americans a year are diagnosed with ACC - a number I haven't been able to confirm yet, but I am working on it. ACC is reported in other countries all over the world - I once read that higher numbers are diagnosed in Europe/UK and Japan than here, again, I haven't been able to confirm that figure. If you are someone like me that 'won' the cancer lottery this year (I would rather have won the cash, thank you!), you may be dealing with high medical bills as you heal. In the USA, the Internal Revenue service offers some help with the bills in the form of a tax deduction if your bills exceed 7.5 percent of your adjusted gross income: http://www.irs.gov/taxtopics/tc502.html. Using an accountant or tax-filing service would probably offer you the best assistance when filing for this deduction. I don't know if other countries have a similar deduction - checking with your nation's revenue office, such as HM Revenue & Customs in the United Kingdom http://www.hmrc.gov.uk/individuals/, would be your first step towards getting answers.
In the meantime, be thinking about how all of us ACC folks could sign up for a single cruise someday, just to get to know each other. Ah, the power and influence we could wield if we got together even once! Invite some cancer researchers along for the ride, and we might end up with a head start on how to cure this 'slow but extremely aggressive' menace.

Back at work, and doing fine!

Well, actually I am on vacation at the moment, but will be back after the holidays full-day strong.

Silence, in this case, has been golden

I have been working, enjoying my family, walking around the malls (Omaha has had a spate of bright sunshine, keeping me indoors between 8 & 5 each day!), and generally enjoying life as I know it. Symptoms I have grown used to: swelling and pain around my left ear and cheek, fatigue (but everyone else says those business meetings knock them out, too-grin!), and lack of taste. Improvements I have noticed: feeling has returned to most of my face, and I have a little bit of baby hair growing at the back of my head on my former bald spot(!). I am getting up the nerve to get my first professional hair cut since July - my husband said he has hung up his clippers (he practically shaved my head in September when the hair was causing me pain with the radiation areas). I have been strong and brave enough for the dentist to work on the inside, but having someone fiddle around my ear and scalp has kept me away from the hairdresser. I predict that desperation and wanting to look my best before going to the moms for the holidays will win over my fears soon.

Celebrations past and yet to come

My husband and I celebrated our 22nd anniversary on Friday with a lunch out at a restaurant I have only eaten at since radiation treatment - so I still don't know what the food really tastes like, but the food's texture is acceptable, and the ambiance can't be beat! His gift to me - SNL's Christmas Past DVD - my kind of comedy!
I am a member of two teams to purchase party food for holiday events this year, and not too sure what I am doing. Right now, it all smells wonderful, but even if the caterer was handing out free samples by the shovel-full, I couldn't tell if it was good or not (and if it is spicy, or contains citrus or tomatoes, I could hurt myself trying it). I simply depend on the opinions of folks around me, and am glad that I am included in the festivities! (I think I mentioned before that there was a show on one of the tv channels about a blind decorator - I wonder if there could be a taste-blind chef show that would be worth watching? If there are any scouts out there, I am up for the challenge!) I have also been planning our family's traditional buffet that the kids love, and have purchased what we usually have each year: cheeses, meats, relishes, sweets (and the occasional vegetable). Since baked goods, sweets, most meats and cheeses are out of my league this year, I think I will add my current dish of choice: Kashi Pilaf http://store.kashi.com/heritage_pilaf.aspx?SID=1&Category_ID=73&
. As for toasting in the new year, I will be clinking my husband's wine glass with my water glass (don't tell Miss Manners!).
Being with the people rather than concentrating on food is what makes this time special for me. I am getting better at staying under the radar of overly-solicitous hosts and their worrying that I am not eating as much as they think I should be (again, my old Weight Watchers' skills coming in handy). If someone appears to feel slighted that I haven't tasted their special dishes, I may explain the reason why, depending if I know them well. Otherwise, I may just shrug and not admit to speaking English...

I bring up the subject of food and gifts because someone asked me recently what gifts to give to friends affected by major illness in their lives. It probably depends on your friends' taste, but you can't go wrong with laughter, creating or remembering good memories, and yourself. For more help on coping with cancer and the holidays, check out OncoLink's Holiday Survival Guide: http://www.oncolink.com/coping/section.cfm?c=6&s=61

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!

Visiting my family doctor

I have visited my family doctor and received permission to go back to work November 1. To say that this has been a most eventful 4 months is an understatement! But I consider myself ready to go to whatever my next level might be. I have been a boss in the past, so I know that I am essentially walking in as a new employee - duties have probably been rerouted, new ones assigned - which is why I wanted to make sure I am physically up to the stresses of proving myself in this new job before I started back. As long as my job allows me to continue helping someone (students, health professionals, faculty, administration, consumers) locate the information they need, I will be happy (grin!). My hope is now that I can still prove myself worthy of employment and promotion. I joke that the surgeon took the remaining math ability out when he removed my left parotid (isn't that where you store yours?) - I hope he left my competitive nature and spirit!
Sources of information and support for you as you consider returning to work after cancer treatment:
American Cancer Society: http://www.cancer.org/
docroot/MIT/content/
MIT_2_4X_ACS_Offers_Tips_on_Returning_to_Work.asp?
sitearea=MIT

National Cancer Institute - Life after cancer treatment: http://www.cancer.gov/
CancerInformation/life-after-treatment

Job Accommodation Network: http://www.jan.wvu.edu/

Family Doctor site: http://familydoctor.org/723.xml

Mayo Clinic: http://www.mayoclinic.com/health/
cancer/HQ01689

CancerBackUp (from the UK): http://www.cancerbackup.org.uk/
Resourcessupport/Practicalissues/
Lifeaftercancer/Workaftercancer

Successfully conquered air travel issues!

The trip to Boston was a great, but tiring, one! Other than the terrifying first 10 minutes on the first leg of the trip, as I waited to see if my ears would pop or just cause me great pain, it was fear-free! Ears popped just fine (even though the left one still feels/sounds like I am underwater), and I had such a low level of pain that I went off my pain meds completely (while reserving the right to use ibuprofen whenever I might need it in the future!). My other mission, being able to eat and drink while outside of my house, was also met, thanks to water bottles bought in the 'sterile' area near the boarding gate (TSA's term, not mine); yogurt, milk, and applesauce available at the food stands in the airport and the grocery store near the hotel. The hotel we stayed at had no trouble fixing me 2 over-easy eggs each morning, and I used milk bought at a grocery to mix supplement at morning and evening. The restaurant meals concentrated on visiting with friends instead of worrying about food - a nice experience! The restaurants had low-spice fish selections on their menues, which worked out great. I was able to ask servers how the food was prepared, which helped in my selections. Someday I will go back with tasting abilities and see what I really had, but for now it was an excellent trip meeting great people, and adequate protein on the side that kept my energy up.

Upcoming adventure and Halloween idea

In a grand step of taking my life back, I am leaving on a jet plane on Sunday. I am looking forward to it, but also have fears that need facing: eating issues while on the road; possible ear pain (or worse) at altitude; my endurance levels while facing travel stress... Like getting on a horse that bucked me off (yep, did that too), I need to see if I can still travel the world or if cancer took that away from me. My money is on me making it just fine, if you want to know the truth! Naturally, I have looked up information that could be of help: using my health insurance site, I searched for oncologists and head/neck specialists in the cities that I will visit and/or layover; I went for the tickets that had the longest time between flights (I doubt I could make the 15 minute dash between gates on this trip!); I visited restaurant web sites to check the menus to identify dishes I could possibly eat (but remember, being with people is more important than eating the food); I made sure that TSA is still allowing passengers to take water purchased in the gate area on board (dry mouth is to be avoided, folks!); and I will pack my supplement and medications with me on the plane in case checked luggage doesn't arrive with me. I once flew overseas with a 9 month old, so I figure this trip will be similar - with me being the infant.
In case you are looking for that cool addition to your Halloween costume, or if you are wanting to show solidarity with someone that is going through radiation, I saw this product on BoingBoing this morning: http://www.voltagehairgel.com/. This is just too cool! I might have to get it to wear to Thanksgiving this year, just to keep relatives on their toes!!

4 week checkup - doing just fine!

I saw the radiation oncologist today, who pronounced me well on the road to healing. I will see him 3 months from now, along with the results of an MRI that he has asked for, just to see what things look like at this stage (sort of a baseline). He answered all the questions I asked (can I get a flu shot now -yes; should I see a PT - after 3 months if I need it then; when will I need to get a tube in my ear - he will reassess at the 3 month checkup; may I go directly off the pain meds or do I need to wean off of them - since I never went into the slow release meds, I can just stop whenever I don't need them and go to motrin). I even told him about the nightmare I had the other night: in the dream, (mirroring real life) I have been doing very well. The doctor in the dream says I am doing too well, and must go through the radiation again until I feel rotten. End of dream. (Oh yeah, that was one that got me up in the middle of the night!) Doing this good at this time is not accidental. The doctor agreed with me that I am doing well because I have worked very hard at staying healthy, with a lot of people's help - just as hard as the professionals have worked to zap the cancer cells out of my head. Doing mouth rinses, keeping teeth clean has kept me from getting things like thrush; washing my head only with baby wash kept me from overdrying my skin while it was being radiated and after while it has been healing; maintaining a good intake of protein despite pain kept me from getting malnourished and put my body in good healing mode; stopping solid food at the first sign of difficulty helped keep my throat in one piece, as has the slow approach to solid food now; getting out each day (while ignoring anyone else's reaction to what I must have looked like) kept me from acting like a sick person; taking care of myself - meals, meds, skin care - kept me independent and in charge, something my wise husband knew would be important to my spirit; and reading all the jokes and messages from my great friends and family kept pulling me back into the positive frame of mind, even when the days were the very darkest.

Still learning

I searched all over for non-soy sources of protein before starting my radiation therapy, and ended up choosing Optimum Nutrition's Gold Standard Whey (chocolate flavored, not that I have ever tasted it). I never received a list or anything from the radiation oncology clinic showing suggestions of what to go for when no longer able to eat solid food, but that might have been nice. If you could have soy as a protein source, there are many to choose from: Ensure, Boost, and Carnation VHC, which all have extra calories and vitamins. The Carnation VHC is a new one for me - I just learned about that while reading the Oral Cancer Patient Forums. I have been trying to read other's stories about when their taste returned, but since everyone has had different treatments it is still hard to predict for me. As the family says, though - at least I can still cook! (grin!) I just might try out for the next Food Network star...

Photos

I include these photos not to shock, but to show what someone going through similar radiation might expect. I am only 3 weeks out from my last treatment, and I think I am doing great/amazing/wonderful. I also include a photo advertising our conference next year (I will forever be a booth babe!). First photo on the far right is just before my first radiation treatment (August 3), showing the scar of my operation nicely healed (the scar actually goes behind the ear too, which explains why my ears no longer match!). The next photos towards the left show what I looked like on Sept 20, after the last radiation treatment. (You can see the precise pattern that the Primus machine left on my face - they truly do have this treatment method down to an exact science). The final two on the left are are from this morning, and show the only areas that I have lost my hair - the back of the neck and the left side. What a comb-over!!

A great resource for the working woman with cancer

This post is just about some informative sites that I found useful. More about me in the morning!
Cancer and Careers: Living and Working with Cancer: http://www.cancerandcareers.org/, by the Cosmetic Executive Women Board of Directors, has valuable information for anyone (but aimed at women) working and living with cancer. Supported by corporate sponsorship, the articles, charts and checklists are written for both survivors and caregivers. For employers considering ways to boost support for those facing cancer in the workplace, the site has a Managing through Cancer program that contains links to information on how to manage through cancer. A company can even become a "managing through cancer pioneer".
This site is good for any working person, not just women: Patient Advocate Foundation http://www.patientadvocate.org. Located in Virginia, this non-profit offers free direct services such as: negotiating pre-authorization approvals; providing assistance in expediting appeals process; resolving debt crisis related to diagnosis; negotiating access to pharmaceutical agents, chemotherapy, medical devices and surgical procedures; resolving insurance issues in the public and private sector. They also have a patient assistance program called Co-Pay Relief, providing direct financial assistance to qualified patients.
Bookmark this site for good links to useful, timely information - Cancer Survivors Network at the American Cancer Society: http://www.acscsn.org/Calendar_and_Announcements/.

Still healing - not time for PT yet

I contacted the radiation oncology office today, and was told that it is too early for PT visit yet. I will find out more next week at my 4 week checkup. I was hoping that I could do something concrete to help the healing go faster (yes, I am the impatient type!). The treatment side effects still lessen (no blisters now, nearly all the redness gone from skin, fewer mouth sores, less pain in head). Soft diet not a complete success - throat still apt to hurt if food is too chunky.
I managed to solve one problem this weekend: me and pillows have not been on friendly terms since my operation in June. They bunch up and gather around my neck too much, or keep my head at too high an angle if I sleep on my side. We visited Linens N Things and found a U-neck pillow that is just what I needed (where was it back in July??). Here is a link to the cover for the thing (for some reason, they don't sell the pillow on their website) http://www.lnt.com/product/index.jsp?productId=1360693. Even placed on top of a regular pillow, this stiff contraption helps keep my neck in a straighter alignment. Plus it is a great secret weapon if a pillow fight begins!

Get thee to a ... Physical Therapist

Things seemed to be getting better with my face and neck region - until today. I am experiencing more swelling on my neck, probably due to the lymph not having anywhere to go. The only support group meeting I have been able to attend had a physical therapist that demonstrated how to keep scars supple and how to move lymph around missing (due to surgery) or damaged (due to radiotherapy) lymph nodes. I have been practicing both manuevers since then, VERY gently, when I clean the burn cream off my face in the morning. I also practice a form of retail therapy in an effort to keep the neck moving - going to Sam's Club, and trying to read the lables on the very top shelves (grin!). I will check with the radiation oncology clinic next week to see if I can be referred to a physical therapist for more instruction, and possibly a compression bandage. A page of information can be found here: http://www.elymphnotes.org/detail.asp?ci=230. If the swelling remains, it can become permanent. I know I may end up with a triple chin (hey, I had the double one all ready worked out!), but to drive I really need to look over my left shoulder (right?). If I can fight this with exercise and bandages, I will. Besides, it may add that great air of mystery to me the next time I teach students...

In case you can't see the sidebar

I have noticed when viewing this blog on other's computers, specifically at education or healthcare organizations, that the sidebar to the right of the page does not show up. If you don't see a sidebar to the right that has a really cool picture of the Chihuly glass sculpture at the Joslyn Museum in Omaha at the top, here is a list of information links that live under the photo. I thought anyone that is facing or is supporting someone that is facing cancer might find these links helpful:

• Nebraska's Free Consumer Health Information Resource Service [CHIRS]


• Locate a consumer health library anywhere in the US, Canada, and other countries


• My Cancer by Leroy Sievers at NPR


• Cancer section at MedlinePlus


• Support for People with Oral and Head and Neck Cancer [SPOHNC]


• Rare Cancer Alliance


• Oral Cancer Foundation

As a librarian, my job is to make sure you can access the information, so consider this a work-around to avoid some code or browser problem. Figuring out the "why" can take place later, or sometimes may remain a mystery... I can live with that as long as the information remains available!

Ever watch "Desk Set"?

If you have seen the ending of Desk Set http://www.imdb.com/title/tt0050307/, EMERAC the computer goes haywire and has to be stopped by Spencer Tracy (with help from Katherine Hepburn, whose sister was a great librarian, by the way). As the machine stops, you hear a panting and wheezing sound, then silence. That pretty much describes how my last two weeks have been - just panting and trying to catch my breath from all the changes that occur with treatment. I have taken this healing time seriously, and it has paid off. I think I have caught my breath now (or at least have my second wind!). Changes will continue to come, but maybe not as dramatic as they have over the last month. One can only hope...

Sneaking up on solid food

Well, soft food at least. This past weekend I have been working to get squished squash, mashed sweet potatoes, soups, and cream of wheat into the diet. The cream of wheat shows how hard I am working on things - not my favorite thing!! Some things I have tried just don't work yet, but I am open to keep trying without hurting myself. If I keep healing at this rate, I will be up to grits and refried beans by Friday (ha!)... but I will have to pass on the burritos, folks! I have found when the family wants to eat out, I can order a non-spiced custard (or yogurt, or applesauce) and a milk and enjoy the time out with them - that is a major lifestyle boost to me at this point, helping me to experience a level of normal again. Mouth sores still occuring, but sore tongue seems to be healing, hence the try at food in addition to the smoothies. Face shows more new skin, so my protein level must be stellar. I am still using the whey protein supplement - if you are interested in what types of supplements are "out there", ask at your local nutrition store, and check with your dietician about the nutrition levels of the supplement, especially if you are planning on living on it!
Taking less pain pills - not so many needed like they were just last week. The only major discomfort has been the unseasonable heat - I wear a hat or carry an umbrella to keep the sun off my face and neck, but the heat just slaps me. I don't worry about sweat getting on the burn - most of the sweat glands were blasted and haven't healed yet. I am looking forward to cooler weather again.
Strangers still notice my face when I head out to the store for food and vitamins, but no one has said much about the white cream on my face or my weird, mismatched ears. If anyone does, I am just going to tell them they should see the other guy! I figure the way I look is a badge of honor, reflecting the fact that I WON.

Healing day by day

Each day is better than the previous one, which is much nicer than what I had been experiencing for the last 6 weeks! Burn still bad but healing. Still on pain meds, but less than I was over the weekend, so I think I have turned a corner. Trying to add real food to the diet, but still using primarily liquid nutrition. Energy level is climbing slow but steady.
Some say visualization is the ticket to healing from cancer. I don't know if I could follow that format, but I found this cool Flash movie from Harvard linked on BoingBoing that might help my radiation-ravaged cells remember what their job is supposed to be: Cellular Visions - The Inner Life of a Cell http://aimediaserver.com/
studiodaily/videoplayer/
?src=harvard/harvard.swf&width=640&height=520. More about the animation can be found at Studio Daily: http://www.studiodaily.com/
main/technique/tprojects/6850.html.
I figure if I watch the video, my cells should pay attention, right?!

Things that make me go "Hmmm..."

(With a nod to Arsenio Hall for that line!) For some reason, the last two times I visited the library, I set the security detector off at the entrance. Hmmmm. For the first time in my life, I have long thumbnails and the rest of my fingers are doing pretty good, too. Hmmmm. I had a cholesterol test done today, and wonder if the lack of meat since August 8 will give me a good reading. Hmmmm.
Update on seeing the nurse today about the second degree burns - she said they are less bad then when she saw them on Wednesday, so I should be even less raw by the end of next week. I have a photo stream of what I looked like at the start of radiation, what I looked like on Wednesday minus the white Thermadene cream, and will take another one at the 4 week mark. Wednesday's looks pretty rough, but if you are about to go through this type of therapy you may experience something different.

Photo proof of treatments DONE!

Treatments DONE!
Originally uploaded by Bibliotek.

Treatments DONE!

If you are wearing a glow in the dark bracelet for solidarity, you can now take it off. I have received the prescribed 6600 cGY of radiation, and have been set free of the mask. I am still taking suggestions on what to do with this thing now that they have give it to me. Please post your suggestions and comments, and I will let you know which one(s) I decide to use to get rid of this thing!
The second degree burns are a little worse again today, so the nurse wants me to come in on Friday to see if they need dressed. They should start healing up after a week - until then, I may be saying some bad words whenever I have to do anything around my face.
Having passed another milestone on this cancer trek really does make me feel better, though. And I don't know if I will ever be able to voice the huge gratitude I have for the care and support of my family, my friends, and my colleagues around the world! I will continue to try, though - figure I have a lifetime left that I can say "thank you" in!

Last doctor visit during treatment

After the treatment today I saw the doctor for the last time as a current treatment patient. He will see me again in 4 weeks to check on how the outer burn heals. He asked how my hearing was (still ok), and how my mouth was (rotten), and checked the skin that is most involved in the treatment (left side of my head). My skin has "broken down" along my scar lines in front of and behind my left ear. When they say 'broken down', it includes blisters, bleeding spots, and areas that just ooze. Oh yeah, I would be real fun at a party right now! Friday and today were the first times that the mask hurt to wear it - the swelling on my left side is that great (radiation has played havoc with the remaining lymph nodes on that side of my face, so there are fewer places for lymph to drain). Tomorrow is the last day to wear the mask, though - I have received official notice that my treatments are over tomorrow. The nurse wants me to come in later this week to check on my skin, though - they may have to wrap me up in a dressing if this breakdown continues. I should get over this hardest part within two weeks, though - that was good news.

Being prepared

Now that pain medication and liquid nutrition are vital parts of my life, I have a zip bag that I can store all of them in, just in case I need to haul them off quickly. Reasons for needing to haul all of my stuff: bad weather, last-minute trip, police knocking at the door saying the neighborhood is being evacuated due to a tanker accident... Saturday night brought me such an opportunity - a tornado warning. Me and the drugs/food/water and a briefcase of important documents headed for the basement until the all-clear sounded. (Tornado passed without hurting anyone - for that I am truly grateful!) Message here is - integrate this new facet of your life into any emergency plans you may already have, because when the time comes, you might not have the minutes to go around scooping things up to take with you.
Some links on preparing for disasters are on MedlinePlus: http://www.nlm.nih.gov/medlineplus/disasterpreparationandrecovery.html .

"Beware the ides of..." September?

Not a good day. Let's just say that a liquid diet does not lead to efficient use of internal body plumbing. I can't wait for solid food to be on my diet again, taste or not. If you are in the same situation, remember that there are clear fiber supplements that can be added to liquid diets - one is Fiber Sure - which may help. The trouble I am running into is with the pain medicine - it slows the body down as well as reduces the tissue and bone pain caused by the radiation treatment. Another thing that has changed is that I noticed some bleeding on my scar behind my ear (that is the scar from my cancer operation 3 months ago). I mentioned it to the nurse yesterday, and she said it was not unusual for this to happen, and to notify the doctor if it ever started and didn't stop bleeding. So just when one thinks balance has been achieved, something else goes wrong, and the hard work starts again to regain balance. Just remember - keep fighting the good fight!
The rule for sleeping now is whenever I can get it - and I have officially dropped off in a conversation (that ought to be a good tale at Thanksgiving dinner this year!). My best time is still in the morning, before and right after treatment that takes place at 10:15. Happily I saw a librarian friend yesterday during my 'good time', and enjoyed a nice gab in the store! It is nice when surprises like that happen.

Side effects more than just loss of taste

Here are links to more information on what side effects a person facing head and neck radiation therapy might experience. Please remember that each person will react differently than what I have described here due to their individual treatment protocol. My family doctor reminded me today that the loss of taste falls into the "nuisance" category of side effects - there are more serious side effects, some long term, that I know I need to be aware of and watch for in the months and years ahead. I know I have a good 5 years ahead of me, though, and I really hope they will be filled with good tastes (selfish grin!). Of course, always best when shared with friends and family!

From the American Society for Therapeutic Radiology and Oncology's "RT Answers" site:
Radiation Therapy for Head and Neck Cancer http://www.rtanswers.org/treatment/disease/head_neck.htm .

From the National Institute of Dental and Craniofacial Research site: Head and Neck Radiation Treatment and Your Mouth
http://www.nidcr.nih.gov/HealthInformation/DiseasesAndConditions/
CancerTreatmentAndOralHealth/
HeadandNeckRadiationTreatmentandYourMouth.htm.

From the American Cancer Society's site: Radiation Therapy Effects http://www.cancer.org/docroot/
MBC/MBC_2x_RadiationEffects.asp?sitearea=MBC.

From the National Cancer Institute site: Radiation Therapy and You: A Guide to Self-Help During Cancer Treatment http://www.cancer.gov/cancertopics/radiation-therapy-and-you/page5 .

From the American College of Radiology/Radiology Society of North America's "RadiologyInfo" site: http://www.radiologyinfo.org/en/info.cfm?pg=hdneck&bhcp=1.

From the HealthCastle.com site: Radiation Side Effects http://www.healthcastle.com/se_radiation.shtml .

And please remember to call your local library for help in locating other information for your condition. They will help you find credible information that you can take to your health care providers and discuss how it could pertain to you and your treatment issues.

Keep on keeping on

There is no other choice - I have to go forward to complete this treatment. Each day seems a week long, and the changes are still coming fast. More tired now, with the sense of humor hard to find after 3pm (dang it!). Still really ticked that food escapes me in any form. I hope that this experience comes in handy later in life - there has to be some value in being taste-blind, other than warning the world that you really shouldn't eat watermelon if you can't taste it - it is like chewing insulation. (Some of you who have known me for a long time probably think I have been tasteless for years -grin! Feel free to make as many snarky comments as you wish - I can use the smiles!) I have reread this entire blog, mining it like a time capsule for my strength and humor of earlier days, and it has helped tremendously, more through the words of my friends and family than my own. Cards, surprises, visits and emails are still coming - knowing that I am not riding the roller coaster without spectators to cheer me on has made this entire episode doable.
Now to the nitty gritty: doctor and nurse visit yesterday went well. Weight holding steady just on the liquid diet, blood pressure best in years, eyes bright and remaining hair shiny. Only trouble is the left ear is swelling to Dumbo size, and the burn is pretty bad. The doctor said I would see him again about 4 weeks after the last treatment to check on my progress, then about every 3 months after that to look for side effects, etc. I am still hoping that some sort of Spiderman power will come over me for being radiated so long, so look for a new superhero soon! (Yeah, the doctor just grinned at that one, too.) The doctor also offered stronger medicine if I should need it. The stuff I am on must be the equivalent of aspirin in the pain control world, but it is doing the trick today. We will see how I am by Friday.
It is amazing to me that this human can go through this experience and still function. All of this has really redefined my idea of what living really is.

Other bloggers on cancer topics

There are many blogs on cancer 'out there'. In addition to the NPR blog "My Cancer" by LeRoy Sievers (linked on the right side of my blog), I have read personal blogs and informational ones. Two examples of personal stories: An Unwanted Journey: Don Spencer's Battle with Cancer: An Unwanted Journey: Day 0205 - Gratitude Project, Truesurvivor. Examples of informational blogs: Colorectal Cancer Coalition , and Vermont Cancer Survivor Network.
Check with your local public or medical library for help in locating reputable support groups and sources of additional information. Just because someone puts up a site that discusses cancer and treatment or care issues does not mean that they are ethical or honest in their presentation of information.

Chris Rock was right

Chris Rock did a show where he talked about not having health insurance when he was a kid, and how his dad said Robitussin would cure any ills, including a broken leg. Only if Robitussin didn't cure it could you go to the doctor. Quote from Mr. Rock: "That's all we had when l was a kid: Robitussin. No matter what you got,Robitussin better handle it." Well, after I had nausea yesterday morning (polite term for "throwing my guts up in the worst way since morning sickness in 1989"), I reported it to the nurse, scared that this was the signal for anti-nausea medication or worse, a stomach tube. She asked me some questions, determined that I hadn't drank enough water on Wednesday, and my mucus was probably thickening up and drainage caused my stomach upset. She told me to get the Robitussin that thinned out chest secretions, and try that while pushing water. Worked like a charm - today was no problem. My habit of drinking 4 liters of water per day had kept me out of the woods, so when I only did 2 liters on Wednesday, it really knocked me out of balance. Back on track now, thanks to Robitussin!

Into the homestretch

I finally asked how many treatments remain: less than two weeks to go before treatments end. I am on pain medication (the kind that could probably pay for my kids lunches if it was sold on the streets!), and moving around much better than just a day ago. To keep me going until the end of treatments and beyond, I keep repeating the Little Engine That Could's mantra: "I think I can, I think I can." Since the effects of radiation are cumulative, I will be having side effects of one sort or another come up for up to 18 months after treatment stops - possibly longer. Right now, I am asking for ideas on what to do with that mask when they hand it over to me.

Thanks to health professionals reading this

If you had today off, you certainly deserved it! If, like Dr. Z., you were on-call, I hope it was a slow, healthy day for both you and your patients. Some overdue thanks, now.
I want to say thanks to the radiation therapists for their concientious way of letting me know that they are leaving the room each time after positioning me. When one's head is screwed to the table, it severely limits one's field of vision, so it is kind of hard to know if one is alone, or when the next rotation of the machine is going to start unless folks say things like, "Here we go", or "This is the last one." Anything is better than nothing, and goes a long way towards lessening the isolation.
Thanks go to the nurses that are always available for questions, and listen during the weekly visits as they help me and my family go down this new road. Their and my doctor's belief that I am doing ok is what keeps me positive.
Thanks to the folks I may never meet - the physicists that figure out how to set up the treatment plan in the computer, the administrators, and other clinic staff. I brought in Panera bagels last week as a tangible thank you for the radiation oncology lounge - I sure hope everyone was able to nosh a bit.

Everyone going through this needs a dietician

I got the official ok to use baby food, and encouragement to increase both protein and fruits in my diet, thanks to a visit with the dietician today. I was able to run my diet by her- both nutrients and calories consumed - and she figures I could still use some additional protein, and probably more fruit. She suggested making things into smoothies, which I did as soon as I got home. Thanks to dad and Barb, I have one of those nifty stick blenders, and it made small work on adding the baby food to the whey supplement. (Remember guys, I have no taste!) I figure I will do this with cottage cheese, no-sugar added ice cream, and some no-sugar-added fruit later for a snack. Drinking the stuff works so much better than using a spoon - even plastic spoons were getting tough to use (dragging on the tongue), so a straw is my friend. The dietician was emphatic about not losing weight during this treatment, and I think she knows now that I have kept that in mind the entire time. The only thing that will sideline my nutrition at this time is if my throat gets to hurting too much to get food down. Then it will be time for a PEG tube. Those things are life-savers!

It's Gerber time!

Yep, baby food is on the menu, thanks to just too much pain going on in the mouth. My goal is to NOT get a stomach tube, so eating anything nutritious - including baby food - will hopefully keep me on track. (And I know if a stomach tube is called for, I will have at least tried my best.) I have checked out the special diet recipes that are included in most cancer books and cancer sites, and not found anything that I would want to go through all the work for=mixing, cooking, blending, then cooling and having enough to eat for many meals. (Yes, family members, I did that for both my kids when they were babies and thought nothing of the work. Life is too funny sometimes!) None of the books or sites that I have seen have suggested baby food as a possibility, so I will ask to talk with a dietician before I go much further.
I found out that I get Labor Day off - no treatment, no doctor visit that day. The hilarious radiation therapist suggested that I use my time off to go and have a beer and barbecue... very funny! Next year, you betcha! (grin!)

Way better than taking off the earpiece!

My engineer husband figured out a better way to keep the earpiece of my glasses off of the burned area around my left ear. I am sharing it here in case it is of help to others, since the eye doctor I visited only suggested taking off the earpiece as a solution. My husband took two squishy earplugs, poked holes in them, and threaded them onto the earpiece of the glasses. I am able to slide them back and forth if I need to, and the texture of the earplugs works fine with my skin (doesn't stick to it). Also, the next time I get cranky, my husband has relief in plain sight!

Recent photo of me and a famous Nebraskan

Folks have requested a recent photo, so I figured this one taken August 25 would fit the bill. This was taken on the occasion of Valda's prestigious award.

This week should be eventful

I have had 16 treatments (I think) so far. I have not been counting, nor counting down, since I know that things can change. Pliny the Elder said it best: "In these matters the only certainty is that nothing is certain." For those of you eagerly waiting to hear that I am balding, yesterday was a big day for that! Pretty much the left side of my head from my ear down is hairless. Even with the shorter haircut, it is barely noticeable, though. This is permanent - this won't grow back like hair does after some chemo. While I won't need a wig, if you have hair you wish to donate for children's wigs, check out Locks of Love: http://www.locksoflove.org/ before you get that next haircut.
Eating has no joy, but I know I have to do it to keep up strength. My treat these days, for some reason - an avocado. Still doing whey supplements to keep the protein level up, and drinking about 4 liters of water a day. I have given up the toothbrush - even the softest one was ripping up my gums. Now I use a gauze pad with the Biotene toothpaste. Reminds me of what I used to do for the kids when they were babies! Still gargling with salt and soda water several times a day to soothe and heal the mouth sores. Still creaming my face with Thermazene, and now have permission to use a little in the ear canal where I am experiencing the greatest burning. So far I have not lost any hearing in that ear, but it will occur later, folks. That temporal bone is getting zapped like crazy, so hearing loss of some level is inevitable.
My stamina is holding up very well - surprising even me! I get tired in the afternoon , but an hour's nap usually does the trick. I have a couple of people to thank for getting me out of my crankiness (my husband will probably send you all flowers, he is so grateful!): everyone that has sent me cards and emails, since I went over them all again when I was really down in the dumps and they lifted me up; a friend that sprung a road trip on me out of the blue, and reminded me that I could still function in society (plus had a hilarious cd that we listened to while driving); my nurse, who reminded me that I am more than just a head getting zapped, so I needed to take care of all of me; a friend that reminded me that I crochet, and got me to pick up the hook again - I am now working on afghans for my family while listening to the wonderful iPod, which gets me out of the 'cancer-think' mode; and two other friends that brought by food for my family to enjoy - that was so nice, and all has been eaten up!
The side effects should start ramping up this week. The past few weeks have just been the ride to the top of the first hill on the roller coaster. Now I get to see what the other side looks like! Hang on for a bumpy ride!

Additional sources of help that are out there

I saw this Canadian news item about an interactive CD-ROM for children facing radiation treatment: http://www.cbc.ca/cp/health/060730/x073006.html . I don't know if it is available here in the USA, but you could ask about the CD, titled "Radiation for Kids" by emailing: patienteducationpmh@uhn.on.ca .

St. Jude Childrens Research Hospital has some wonderful interactive presentations, designed for families and children dealing with cancer: http://www.stjude.org/media/0,2561,453_2086_21241,00.html.

MedlinePlus has a Radiation Therapy interactive presentation: http://www.nlm.nih.gov/medlineplus/tutorials/radiationtherapyintroduction/htm/index.htm . I located this on the Radiation Therapy Health Topics page: http://www.nlm.nih.gov/medlineplus/radiationtherapy.html.

Crankiness setting in big time

Folks that read this blog knew it was bound to happen (admit it, you did!). Mouth is getting sore (gargling with salt and soda in cool water helps a lot); no one can get near my face or neck due to pain and the cream that is slathered on; and eating is only for health reasons (I can hear the WW leader now - "It's about time!"). No matter how much water I drink or rest that I get, I am not going to be able to counter the radiation effects totally. Still, I have it so good - many friends and family there to support me through calls, email, cards, and visits; excellent health professionals caring for me; a great job waiting for me... so not whining. Just cranky.
We used to walk volksmarches overseas, and there was always a part in the 10K walks that I would wonder, "Will the trail ever end? Can I make it all the way?" (I still say they had skill in plotting trails that were uphill both ways!) Then I would realize that I didn't have a choice, there was only one way out and that was to follow the trail as it led back to the starting place. I guess this is the type of journey I am on now - no choice but to follow the trail back to where I started. I feel confident that I can make it, but it may be rough on those close to me!! My husband has been most understanding during all of this stuff that we find ourselves in, but I heard him joking to a coworker when we stopped by the library yesterday. My friend had commended him on taking such good care of me. He shot back with a grin, "I have to take care of her - she's mean! I used to be 3 inches taller!"
New side effects: drying nose due to increased radiation effects (helped by saline spray); drying ear canal due to radiation effects on wax (no solution as of yet - open to suggestions); and some deep face pain (so far, Motrin is fixing that). Thank goodness they give the weekends off to help the healthy cells gain strength. I will practice being a better housemate with my family this weekend, I promise! (grin!)

Travel and treatments

The entire family skipped town this past weekend, driving to see moms and dads and grandmas and grandpas before the side effects take too much toll on the quality of visits. The travel wasn't bad at all - I just tucked in the back seat with a pillow up around my neck to keep off the sun, and snoozed most of the way. Thanks to having a couple of days off of treatments, and that wonderful Thermazene cream, the redness and soreness of my face lessened nicely. Having to pass on some of my mom's best home cooking was a little more difficult - can't wait to get that taste back!
Today was lucky 13th treatment. No problems, just in and zapped like I had been doing it a long time. I saw the nurse and the doctor today for the weekly checkup, and asked the doctor about the flashes of light I see in my eyes during the first pass of the machine. (Sort of like northern lights, only faster). He said that the photons excite the retina almost like a fluorescent bulb. I asked him if that meant my eyes were being permanently damaged - he said no. So I guess I can enjoy the light show!
The nurse stressed to me that I need to keep active each day in order to stave off the fatique that tries to swallow me up. We make one trip out each day that is usually a combination of errands and visits, then add a nightly "walkies" for me and the dog. The dog loves to terrorize the neighborhood rabbits, but is too slow to catch them! (They act like a treadmill for him-grin!). Sleeping good at night, but waking up early due to pain in the cheek and jaw. Since I can't put on any of the cream before the treatment at 10 am, getting up and active keeps my mind off of the hurting. Still not as bad as what I felt with the tumor in-amazing!

Side effects increasing

After the treatment session today (the 11th!), I stopped in and talked with the nurse about the increased redness on my face and neck. Books describe it as a sunburn, but this goes much deeper than just the skin, folks! She consulted with the doctor, and I have a new prescription for Thermazene, a sulfa drug ointment that will keep the nasties from growing on my damaged dermis. It is a cream that comes in a blue jar. My husband saw it when the pharmacist was going over the application instructions with me, and crowed, "Great! My wife is going to be a Smurf!" The pharmacist grinned and said, "Hate to disappoint you, but the cream is white."

Technology

I miss being at work very much, even though I know the hardest job in my life right now is to stay well during this treatment so I can rejoin the crew at the library after it is over. In addition to the great people I work with, I miss the technology that I use when searching for -and educating others about- health information. The coolest thing about being a medical librarian is tearing down barriers for health information seekers. Unfamiliar technology can be a big barrier, so I work hard to keep up with the newest trends, while staying fluent in the older ways. These days, most all health information requires using technology of some sort, unless you simply ask a librarian for help. (It is okay to ask for help. We wouldn't do this searching and educating as a job if we didn't enjoy it!). Well, my colleagues at work must have known I was experiencing a lack of new technology. Those wonderful people went together and surprised me with an iPod of my very own to care and feed during these weeks of treatment! Figuring out how this new critter can dance (metaphorically, of course) has really brightened my days. If you are lucky enough to have an iPod already, or have great friends that will surprise you with one, you should check out the podcasts and audiobooks pertaining to cancer treatment. Most podcasts are free, but most audiobooks are available for a price. Some examples of podcasts pertaining to cancer include: Discovery Health Channel; some medical centers such as Johns Hopkins ; and at cancer support sites like The National Coalition for Cancer Survivorship [NCCS]. The NCCS has its wonderful Cancer Survival Toolbox available free on iTunes, as well as free audio files on its website. Some of the topics covered in the Toolbox: Making Decisions, Solving Problems, Negotiating, Finding Ways to Pay for Care, and Standing Up for Your Rights.
Audiobooks on iTunes include: Cancer Schmancer, by Fran Drescher; Return to Wholeness, by David Simon, M.D.; and Live Strong:Inspirational stories from cancer survivors, by the Lance Armstrong Foundation.
Please don't think you have to purchase a new piece of technology to listen to audiobooks, though. Remember that your public library most likely has audiobooks with players for you to listen to while waiting for care or resting at home. These could offer avenues of escape and education for survivors and caregivers alike.

Old message from July 20th

[I sent this Cheeky Librarian message out to friends as a way to keep them up with what I was going through, before I started the blog. I am repeating it here as a way to save it, as a couple of links and book titles are worth referring to later. -th]

Here is a Cheeky Librarian* Update to let you know how things are going with me and this new road I am on. My mom made her first trip ever to Omaha last week, just in time for the rush of doctor and dentist visits as I prepare for radiation treatments. She was impressed with the amount of time that all of the health professionals gave us, particularly my radiation oncologist, the oral surgeon, and my treasured family physician (she is the very best!). I have been looking at support material for head and neck radiation side effects, and what I have been reading has led me to have daily tastings of some of my favorite things - since they may never taste as good to me again. I will still have memories and my imagination to go on, and probably smaller pants sizes as a result (grin!). While Mom was here, I took her down to the wonderful Omaha Hilton to experience the executive floor and the Old Market cuisine - I figure if kids can do "Make A Wish", I could have one too, and I wanted to travel with my mom (even if it was only 5 miles away). Thanks to the great Hilton folks and the Omaha Old Market ambience, we enjoyed the overnight stay, and truly forgot for a few hours about the cancer as we noshed on creole boiled shrimp, cream puffs, and a dinner of ribs at Famous Daves. Oh yes - the ribs and good times will be memories that I will be replaying as I get my treatments (the radiation therapist will probably wonder why I start drooling and grinning!). We even saw the stunning photos by Thomas Mangelson in his Images of Nature Store down the block from the Famous Daves . I did up a page of recent photos you may wish to check out. The pictures of me and my children are the latest, showing my new short hair cut. I was going through family photos, and realized that I am in very few of them, since I am the family photographer. I am trying to fix that - so glad that I have time to change my ways (grin!).

Some information resources that have been very helpful to me that you may wish to check out too (if there are ISBN numbers, just take them to your library and you can either locate the book or request an interlibrary loan):
-Leroy Sievers' blog on NPR: My Cancer . Today's [July 20] entry especially fits what I would like to say to you and all of my friends - I love you and thank you for your support for me & my family and interest in my cancer treatment, but I also know that you are having issues and problems too. Don't apologize for bringing them up - let me know if I can help you as you have been helping me.
-A wonderful book that a friend sent: Don't Leave Me This Way by Julia Fox Garrison. ( ISBN 0-06-112061-8) All medical centers should have this book and make it required reading - there is even a section in the back on how to have a productive visit with your doctor, and an open letter to all doctors. Ms. Garrison tells of her experiences of her stroke and rehabilitation, highlighting her strength and the reactions of the health care professionals around her assuming that she was in denial since she decided to meet this disruption to her life with humor. I have seen those "looks" on health professionals' faces, too, since I have chosen to laugh at it or because of it rather than be all somber. I love this quote found on an oral cancer support site: " A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort. Herm Albright (1876 - 1944) " Humor coupled with small doses of evidence from the literature should keep me annoying folks for the next few months!
-I received a copy of the Livestrong Foundation's Survivorship Notebook thanks to a referral by another friend. It has a ton of general cancer information as well as survivor stories in it - worth sharing with my kids and husband as a way to start conversations about all this stuff that I am about to lead them into with me. Cancer is a family thing, and as a family we will heal together.
-A great book given to me by two wonderful friends and colleagues at work: Everyone's Guide to Cancer Supportive Care (ISBN 0-7407-5041-0). This one volume has been my lifeline from the start. What information it doesn't have, I have located or had sent to me by the consumer health librarians in Omaha (man, we have the best ones in the nation!).

Keep those jokes coming in the email! I have loved every message, and have printed them off to savor during the down times. THAT ought to make me stand out a bit - becoming the lady giggling to herself in waiting rooms! More later - Teri


*I decided to call these update messages the "Cheeky Librarian Update" since my cheek is involved, and the slang definition of 'cheeky' in Wikipedia probably fits me. You be the judge...

Please feel free to comment

Feel free to comment on anything I have said, or if you have additional things to add that might help my or others' trip through cancer treatment. You don't have to be a member of Blogspot to comment - I have changed that - but I reserve the right to moderate all comments.

End of Week One

I thanked the radiation therapists today for making the whole radiation treatment experience one that could fit into my life. I don't mean "heading to Crane Coffee for a latte" type of fitting into my life, but getting to the sessions is no longer the focus of my day. Today I went on the way to taking my son by the high school for his yearbook signing party. Being able to adapt this treatment into my days is a good thing, and one that the health professionals have helped make possible. Thank goodness they are a cheerful bunch, and laugh with me.
Side effects have started cropping up, but not bad. My left cheek has mild sunburn, but I am putting Aquaphor on it after each session to help heal the outer skin. Taste left the building on Tuesday - my tongue only tells hot and cold, a very weird sensation. I should probably be banned from cooking anything for anyone else! I am keeping track of what I eat just to make sure I am taking in enough nutrition. And with the exception of Alton Brown's shows, I no longer get the kick from watching the Food Network - maybe once the tastbuds come back (hopefully around 5 months after the end of my treatment.) Drinking lots of cool water. No great fatigue yet, luckily. We have been walking every evening after the sun goes down - not turning vampire, just trying to keep extra sun off of my face and neck. The malls are also a great place to walk, since Omaha is being treated to a luxury of high temps and extreme humidity (grin!)
I am not sure how I will end up (physically, that is) after this whole episode of my life has passed, but I have been thinking that other things are radiated every day and are full of beauty. One of my favorite artists is Dale Chihuly. The Joslyn Museum has one of his installations that covers an entire wall of glass which the sun shines through daily. Now THAT is some radiation!

Catching up

Monday, August 7: Today went very well, not like Friday. Friday sucked rocks, and I spent the weekend extrapolating that experience to the next 30 some-odd sessions...and getting pretty depressed about the whole experience. Friday's issue - I wasn't getting placed the way I should have been for correct radiation. The best moment during that long session was when the radiation therapist touched my arm, and reassured me that it wasn't my fault, it was just that they had to make sure the measurements were correct before proceeding. That did a world of good for me! Another problem I had was trying to keep my hip from hurting while stretched out on the table. They give you a bolster to put under your knees, but it wasn't giving me enough help. I toughed it out. Still another issue on Friday was that I tried using earplugs to keep the loudest part of the machine noise out of my ears. Bad decision - it ended up being WAY too much sensory deprivation! Today was slick - everything fit, stayed where it was put, and I left out the earplugs. Oh, and I took Motrin about 2 hours before, so my stupid hip wouldn't hurt while on the table. Nice that I got so comfy while that sharpshooting radiation machine could lambast me with ease (grin!). My husband and I saw the doctor today. He showed me the image map, proving to my little heart that my right cheek (parotid gland) should recover - it will only receive about 10% of the total radiation. He said I was already starting to turn red - I didn't know I was that fair-skinned. I asked the doctor how he would be able to tell if he did a good job, and he honestly said he would never know. The cells they are after can't be seen or tracked. All that is hoped with this treatment is that I don't get the tumor back in the primary area. The nurse today was very pleasantly surprised to find out that I have been doing flouride treatments for 2 weeks already. She really grinned when I asked for 16 tongue depressors, since she didn't figure I knew to exercise my jaw to fight lockjaw (the radiation will reduce the fluid in my joint, so they think exercising it will help keep it flexible). I might have to do a photo shoot for Make on how to create one of these tools... After proving to her that I knew that I must maintain top nutrition and that I wasn't looking to lose weight while doing the radiation, she said that I was one of the most proactive patients she had run into lately. (Thanks, CHIRS!) My goal is to stave off neutropenia (I think that is the term), where I lose immune system and they have to postpone radiation until I get my strength back. I don't want them to have to do this any longer than we have to. One supplement that I have been looking into is the whey protein shakes that body builders use. That has so much more usable protein in it with little carbs or sugars, and no soy. (I can't have soy.)

First radiation treatment done-34 to go

Before going in this afternoon for the first treatment, I called the nurse assigned to my radiation oncologist to make sure I was correctly prepared for this and future sessions. I had read somewhere that it mattered when lotions were applied to the skin, and I wanted to find out what the time limits were, as well as any other hints and tips she could pass along. For some reason, no printed material was given to me at or before the simulation explaining these things, as well as hints on how to deal with dry mouth. Nevertheless, I figure I am the one responsible for finding out this stuff that is happening to me, which is why I called. The nurse was very helpful, and stressed that she was there for any questions I might have.
The treatment was actually 3 arcs of the IMRT machine over my head from right to left sides. One of the radiation therapists set off the 'clicking' sound (more like a cap gun when it is up against my ears!) so I would know what it sounded like when the radiation was taking place. I was very grateful for the advance knowledge! Extra time was taken before the treatment to make sure that all was in the right place. I was in the mask and ready for the radiation to take place when I heard Foreigner's "Feels like the first time" song on the sound system. I couldn't laugh or grin, but could only ask the therapist if the song was just for me. She laughed for us both, saying that no, they didn't make special sound tracks for each treatment, but agreed that it was funny that it played at that moment on my first day!
I called my mom to let her know the 'first time' had taken place, and she asked me if I was sunburned yet. I didn't figure it would happen to me this quickly so I hadn't been feeling for it, but I suppose that some folks react fast to the radiation. So far, nothing different with me. I can't say I am looking forward to the remainder of my treatments, but I am not as anxious about them as I had been, now that I have one behind me.

Steps I have taken up to this point in treatment

After diagnosis, I contacted our local medical library for some background information on the type of cancer and the current methods of treatment. (Yes, I am a medical librarian, but I leave my personal searches to other professionals - I am just too close to the situation, and don't feel that I would be objective enough to get the big picture.) My surgeon had said radiation was the treatment of choice to try and keep the tumor from regrowing in the cheek. I wanted to know if there were any researchers publishing about the most effective method of radiation or other experimental treatment methods. This search service is free to anyone in our state. You can search for local libraries in the United States, Canada, and other countries in the world that offer consumer health information services like the one I used by going to MedlinePlus, an online health information site maintained by librarians at the U.S. National Library of Medicine: http://www.nlm.nih.gov/medlineplus/libraries.html .
I also checked in with my dentist, since I will be receiving radiation to my head and neck area. She set me up with flouride trays which I use twice a day to try and strengthen my teeth for the time later in treatment when I have less protective saliva. (I didn't know spit had so many good uses until faced with losing mine!)
My family doctor had been aware of my diagnosis, so I met with her to see if there were any other issues I needed to pay attention to before, during, or after treatment. Right now, regular checkups are all that are warrented.
The only doctor I haven't seen at this time is my eye doctor. I could get new glasses, but the radiation oncologist said that I may be taking the earpiece off of my glasses if my face gets sore from radiation. I figure I will use my old glasses at this time, and spring for my eye checkup and new glasses to celebrate the end of my treatments.
Other things I have done before radiation starts: tasting my favorite foods with good friends so the memories will last even if I can't taste my favorites the same way later; went for a very short hair cut to tide me over during and after the 8 weeks, since I figure I won't want anyone fiddling around my face if it is tender; went to some funny and action-packed movies with my family (my family is going through stuff, too, and any time we can let off steam together it is a good thing!); spent time with friends and relatives (I don't figure I will be seeing many folks during the treatment weeks); and bought a hat to keep off the sun (they are all on sale now!-grin!). I stopped by my library yesterday to celebrate with the staff my and another colleague's anniversary - man, the years go by fast! - and distributed glow in the dark bracelets so they can join me as I start "glowing in the dark". I know, no glowing will actually take place, but the smiles were worth being silly over this. There is enough seriousness going around - it is good to play once in a while!

Yes, it does come off!

Yes, it does come off!
Originally uploaded by Bibliotek.

Me and my new mask. The radiation therapist said that at the end of treatment I get to take the critter home. I have seen some on the web that people have turned into artwork. The first thing that came to my mind to do with it was to toss it into a wood chipper or in front of a blowtorch... Bless their hearts - the radiation therapists said I had a small head. They sure know how to win a person over! (grin!). The next time I meet up with this thing will be later this week while it fails to screen out the radiation beams. I heard that they play music while the treatment is going on. With all of the mechanical noise, I hope it is loud!

Mask cooled and hardened

Mask cooled and hardened
Originally uploaded by Bibliotek.

I appreciate the radiation therapist that took this photo. I still have to ask what the tapes on the mask mean - it was hard to talk while the mask was on, and I forgot to ask when they set me free.

Simulation Day

Today was Simulation Day. Simulation is where the radiation therapists and radiation oncologist get everything ready to factor treatment decisions that will take place for me over the next 8 weeks. One major thing that had to take place was creating the mask that will hold me still during treatments. Like I had discovered on the children's radiation website (folks just don't tell adults enough to prepare for what is going to happen to them sometimes!), the plastic mesh mask that had been heated to around 160 degrees F felt like a hot, wet washcloth when the skilled radiation therapist pulled it over my face and snapped it to the table. They put cooler washcloths on the mesh to cool the mesh as they made sure it was molding to my head. Before the mesh cooled and hardened, I could feel my pulse in my neck pushing on the mesh - yeah, I was a tad nervous. I never felt trapped (not by the mask, anyway). A couple of x-rays later, we all went into another room so they could do a CT scan on me with the mask on. The information gathered will get ground through the big computer and the team of physicists, producing a program on how they are going to 'Swiffer' out those cancer cells from my left cheek. I had to sign a consent that mentioned the side effects that could happen - but I am holding faith that the professionals and their computer program will work to minimize all foreseen events. (I wonder if they ever have to reboot THEIR computer??-grin!)
Up to today, I have been healing from the surgery, and enjoying relief from the pain in my jaw that has been my companion for 3 years. I have also been gathering strength for the healing yet to begin, after I start receiving doses of cell-killing radiation 5 days a week. The cancer cells will be on their way out - good riddance. My concern is with the recovery of the healthy cells that need to stay that way despite being zapped daily. I also have to recognize that no matter what I have done to prepare for the radiation and its possible side and after effects, I could still get thrown a curve and something unforseen will happen. The phrase "taking things day by day" has taken on a whole new meaning for me now - and thanks to my many, many family & friends sending support through jokes, dinners, information, and prayers, I think I can actually enjoy each day as it comes.