Thursday, October 26, 2006

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.

Friday, October 20, 2006

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!!

Tuesday, October 17, 2006

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.

Saturday, October 14, 2006

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...

Thursday, October 12, 2006

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!!

Tuesday, October 10, 2006

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/.

Monday, October 09, 2006

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!

Friday, October 06, 2006

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...

Thursday, October 05, 2006

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:


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

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...

Monday, October 02, 2006

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.
 
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