Wednesday, September 27, 2006

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?!

Friday, September 22, 2006

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.

Tuesday, September 19, 2006

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!

Monday, September 18, 2006

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 .

Friday, September 15, 2006

"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.

Wednesday, September 13, 2006

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.

Tuesday, September 12, 2006

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.

Friday, September 08, 2006

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!

Wednesday, September 06, 2006

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.

Monday, September 04, 2006

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.

Friday, September 01, 2006

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!
 
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