Wednesday, August 30, 2006

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!)

Tuesday, August 29, 2006

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.

Monday, August 28, 2006

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!

Sunday, August 27, 2006

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.

Thursday, August 24, 2006

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!)

Monday, August 21, 2006

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!

Thursday, August 17, 2006

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."

Tuesday, August 15, 2006

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.

Friday, August 11, 2006

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...

Thursday, August 10, 2006

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.)

Thursday, August 03, 2006

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.

Wednesday, August 02, 2006

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!
 
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