Tuesday, December 26, 2006
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.
Thursday, December 21, 2006
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.
Sunday, December 17, 2006
Friday, December 15, 2006
Sunday, December 03, 2006
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
Monday, November 27, 2006
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.
Thursday, November 23, 2006
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!
Wednesday, November 22, 2006
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.
Wednesday, November 15, 2006
(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
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
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:
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/.
Tuesday, November 07, 2006
-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!
Wednesday, November 01, 2006
Thursday, October 26, 2006
Sources of information and support for you as you consider returning to work after cancer treatment:
American Cancer Society: http://www.cancer.org/
National Cancer Institute - Life after cancer treatment: http://www.cancer.gov/
Job Accommodation Network: http://www.jan.wvu.edu/
Family Doctor site: http://familydoctor.org/723.xml
Mayo Clinic: http://www.mayoclinic.com/health/
CancerBackUp (from the UK): http://www.cancerbackup.org.uk/
Friday, October 20, 2006
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!!
Tuesday, October 17, 2006
Saturday, October 14, 2006
Thursday, October 12, 2006
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!!
Tuesday, October 10, 2006
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/.
Monday, October 09, 2006
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!
Friday, October 06, 2006
Thursday, October 05, 2006
- 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!
Tuesday, October 03, 2006
Monday, October 02, 2006
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.
Wednesday, September 27, 2006
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/
?src=harvard/harvard.swf&width=640&height=520. More about the animation can be found at Studio Daily: http://www.studiodaily.com/
I figure if I watch the video, my cells should pay attention, right?!
Friday, September 22, 2006
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.
Tuesday, September 19, 2006
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!
Monday, September 18, 2006
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 .
Friday, September 15, 2006
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.
Wednesday, September 13, 2006
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
From the American Cancer Society's site: Radiation Therapy Effects http://www.cancer.org/docroot/
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.
Tuesday, September 12, 2006
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.
Friday, September 08, 2006
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.
Wednesday, September 06, 2006
Monday, September 04, 2006
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.
Friday, September 01, 2006
Wednesday, August 30, 2006
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!)
Tuesday, August 29, 2006
Monday, August 28, 2006
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!
Sunday, August 27, 2006
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.
Thursday, August 24, 2006
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!)
Monday, August 21, 2006
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!
Thursday, August 17, 2006
Tuesday, August 15, 2006
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.
Friday, August 11, 2006
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...
Thursday, August 10, 2006
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!
Thursday, August 03, 2006
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.
Wednesday, August 02, 2006
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!
Monday, July 31, 2006
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
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.
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.