Eddie's First "Love Letter"

This was just too cute for words, so I had to share it with you!

One of the prizes Eddie won at the arcade this past week-end was a giant pen. He then proceeded to write all sorts of things on the pad of paper supplied by the hotel. The first thing he wrote was this note to the first grade girl who likes to chase him sometimes on the playground. I blocked out her name for safety reasons. When I asked Eddie about it, he said that this girl is now his sidekick. He wants to give this note to her tomorrow. It says, in case it doesn't show up on the website, "Dear ___, I like you. Best, Eddie." He's learning cursive writing, too, if you can tell when he signed his name.

It's true. Kids grow up fast!

Ending Spring Break with a Bang

My son and I just got back about 5:30pm from the Great Wolf Lodge, in Grand Mound, Washington. First, it's heaven for kids - with a huge arcade room and an indoor waterpark. I managed to stay away from the computer for over two days! It was great . . . it's amazing, though, that once I got back on the computer, I've been on almost constantly! Shame on me.

I feel guilty about going to this park because of the sheer amount of energy, electricity, and water this lodge uses! While Carver (http://carverblog.blogspot.com/) observed Earth Hour for well over a day, I was wandering around this lodge with my son. He had a grand time in the waterpark - going down a massive funnel-looking contraption in a four-person raft and getting dunked by a giant bucket of water - and at the arcade (where he won over 1000 tickets over the two days). I wanted to do something with him that was fun for him. We went with my sister and her family and her daughter's friend and also my partner, so I was able to take breaks from the pandemonium - my brother-in-law took care of Eddie in the park a couple of times since I couldn't get into the water - and Scott took him, too, as well as to the arcade. I did manage some time to myself, though, when I treated myself to a "self-renewal" 90 minute ayurvedic relaxation session at the spa. Laurie, I think was her name, massaged my feet and gave me a facial and rubbed my head, shoulders and temples. We had a wonderful conversation, too. She's interested in marine biology so we chatted about that because my own work is with the King Islanders, who subsist on marine resources. We also talked a bit about the similarities between ayurvedic medicine and Chinese medicine. I left feeling relaxed and I believe the treatment was good for my face.

So, a good week-end. I consoled myself about Earth Hour by thinking that I turned down my furnace and my electricity at my house while I was away.

Wild and Crazy Spring Weather

On Tuesday evening, when I was in Bandon, it was beautiful, almost 60-degree weather. Then a squall came in overnight. Wednesday morning, before I left Bandon, I witnessed a thunderstorm - saw a lightning strike and I was only able to count to "1" when I heard the crack of thunder. Then, it downpoured, then I had a few minutes of hail. When I went to say goodbye to my friends in their room, the winds increased for about 15 minutes. We could see the wind blowing the water on top of the sand and it was creating long streaks.

When I got home, my folks said that it had snowed here in the valley - big large snow flakes. I guess it snowed in the foothills of Portland, too. This morning, when Eddie and I looked out the window, we saw snow on the bench outside our front door. I took this picture - it shows my daffodils in the back, the lilac has buds, and then the snow on the bench. Wild weather - can't make up its mind!

My Wonderful Quick Trip to Bandon, Oregon

Yesterday, I drove 4 hours down Hwy 101 and landed in Bandon for the night. I met one of my oldest friends, Paula, and her husband down there - she's a school teacher and on spring break, too. I arrived there about 4pm and it was beautiful down there. Windy, but sunny. While they took a nap, I walked on the beach and then on Coquille Point, where they had a half-mile interpretive trail. It took me about an hour. It was absolutely gorgeous and it felt so good to breathe in fresh, clean, sea air! I was kinda tense (issues with my partner) and the walk really rejuvenated me! Anyway, I will see if blogger will allow me to post a picture and then add a caption . . .

When I took the steps down to the beach, I first headed south and walked as far as I could in that direction - maybe 1/4 to 1/2 mile. Then, as I went up to the bedrock that blocked my way, I was greeted with a little treat! There was this hole in the rock! Didn't expect to see it; another lady was also there and we both said that it was a pleasant surprise to see that there!


I tried to take a picture of the building where my room was - you can just barely see the roof above the rocks (look over the steps) - the cars are to the right of my building.


This rock is on the north end of the beach where I stayed - I stopped and watched the waves crash through the hole in this rock for about 10-15 minutes. I was awed by how much force the waves must have as they go through this hole.



Below is a view of Table Rock, which was north of where my room was. There are a bunch of birds (the white specks) on it. I took the picture from Coquille Point, which is a national wildlife refuge, noted particularly for the migratory sea birds that fly through here in spring and fall.



This was the view of the rocks outside my window this morning - I happened to look out when the sun was shining on the rocks, otherwise, the rocks would've been dark as it was mostly overcoast today.


I had never spent time in Bandon before. I liked this little community but more importantly, I really loved this beach because of the large rocks that lay just off shore. There was one rock called "face rock" but unfortunately, I didn't get a good shot of that one. You could see it really well from my friend's room. Also, I apologize. The pictures are small - meant to make them larger, but blogger is going awfully slow posting my photos today. I think if you click on the photos, you can get them to go bigger.

We also had dinner at the Wheelhouse in Old Town Bandon - we had wonderful stuffed mushrooms (with cream cheese and crab meat) and I had the seafood linguini that had scallops, shrimp, tomatoes and capers. Delicious! It was a very good visit with my friends . . . too short, but I had to come back today for my appointment with my oncologist.

Lab Results and Skin Issues

I saw Dr. Kenyon today and got the results of the blood lab results from last week. My CEA is 0.9, which is a good normal number. The normal range is 0-2.5 micrograms. So, it was in the normal range - a good sign! However, my CA 15-3 level was 36. Two months ago, it was 31. Three months before that, it was 23. Normal is less than 35.

So, should I be worried about this CA 15-3 result? Not really. While in the best of all possible worlds, we would have liked to see this number go down, it isn't cause for concern, because apparently, they are not quite sure what this test is measuring. Here is one critique of the test:

http://209.85.173.104/search?q=cache:a0xdCuoRq5gJ:grouppekurosawa.com/blog/2005_03_16_+CA15-3+blood+test&hl=en&ct=clnk&cd=4&gl=us&client=safari

According to what this person on the blog says (a Dr. Stephen Martin, who has a Ph.D. in immunology; he is promoting his therapy in the blog and seems to be defensive about what he does as it doesn't seem to be widely respected in the medical community; however, he quote legitimate research, although I cannot judge whether his interpretation of these studies is accurate), this tumor marker could also go up when the tumor is dying.

Dr. Kenyon also said that this test measures growing tissue, which could be an indication of another thing going on with my skin. In the area where there were skin mets (as opposed to just the rash) - that cauliflower area - I started to develop a hard thick scab. So, Dr. Kenyon advised me to soften it up a bit by putting aloe vera gel on it. The scab sloughed off last week, leaving an open wound that is about 3 inches long and half inch or so wide. A few small, pencil-eraser-width areas have bled a little and the whole thing weeps a yellowish clear fluid. Not a lot, but a little bit. So, I've been keeping it clean, patting it dry, and putting a non-stick dressing on it. I asked him if there was anything else I could do and his reply was to keep it clean and dry. It may take several months for this to heal! Bummer, but what can I do? At any rate, he said that the elevated CA 15-3 test may be an indicator of my body trying to regenerate the skin in this area.

In the meantime, no swimming pools for me! Double-bummer, because on Friday, my sister and her husband and two kids and Eddie and I are heading to a place called the Great Wolf Lodge, in Grand Mound, Washington, just south of Olympia. It apparently has one of the largest indoor water parks, including this funnel-like thing called the Hurlin' Tornado, that you go down in a four-person raft. Ah well. My sister said that they could take Eddie with them. That means that I'll get to go to the spa instead! And, get a manicure and a massage, too, I think! Yippee!

Boob Jokes Cards

The other project I did tonight and yesterday was to create a "Boob Joke" card that I will use for thank you cards. I owe quite a few, again, so my objective this week is to write them out and send them to folks. I decided to use the cartoon I posted last week - http://deeupdates.blogspot.com/2008/03/warning-following-cartoon-may-not-be.html - entitled "Warning - Following Cartoon May Not Be Appropriate for Young Viewers".




Here are the pictures - sorry about the shadow. Haven't had a chance to retake the picture yet. Over the cartoon, I had the following headline: "What Women Who Have Had Bilateral Mastectomies Don't Have To Worry About". On the back, I have two boob jokes: "What did one saggy boob say to the other saggy boob? If we don't get support soon, someone will think we're nuts!" and the joke that the nice guy at Dutch Brothers told me yesterday. (I wish I knew his name, 'cuz he remembers what I order. All the people who work there are really friendly, too, which is why I keep going there.) The joke is "What do older women have been their boobs that younger women don't? A belly button!" (So, if you're the guy who told me the joke, please let me know your name! Thanks!)

So, I had fun CONCEIVING of the card, but the implementation of creating it was frustrating! I wrestled with #$@$%&)O Microsoft Word for about two hours trying to get it to work - had to use text boxes and I had to rotate the picture - NOT fun. But the result was worth it. For those of you who have been so generous to me, this is what you get! Have fun!

My Inner Child Was Having Fun Today!

My son's favorite show at present is "The Price Is Right". He likes Drew Carey as host, but he also seems to like Bob Barker just as well. He even knows the announcer's names. Now he's even getting the names of the models, too, because when I let him on the computer, he's often watching You Tube videos of old shows of Price Is Right - even shows dating back to the 1970s and even earlier - even versions of the show from England! He also has his own computer game of the Price Is Right and we will sometimes play "pricing games" in the car when we're driving places. (My son has Asperger's Syndrome, high functioning autism. He's a pretty normal kid, overall, but he does tend to focus his attention on one or two things. His focus now is The Price is Right and also the Magic Treehouse books. Last summer and fall, it was the Magic Schoolbus books and Wheel of Fortune and Jeopardy, which he still likes.)

At any rate, his birthday is in July, so I got the bright idea over the holidays that maybe for his birthday, we'd have a "Price Is Right" theme, complete with one or two games. I enlisted the help of my brother-in-law, Henk, to build us some of the games. We decided to start on Plinko and week-end before last, he got the plywood out, drilled holes, and then glued pegs into the holes. He also built slots into the bottom and a guide for the bottom and sides of the board, so the Plinko chips don't fall out. This past week-end, I bought paint for it - Eddie said he wanted it to be green. I found a lighter, spring-like mint-colored green. Someone told me it wasn't "manly" enough, but I thought a lighter green would be better. Eddie then told me that he wanted polka dots on it as well as the word "Plinko" written on top.



I painted primer on Saturday, then last night, I painted the mint green over the whole thing. Tonight, I found a fun font and printed out "Plinko" in large letters, cut out the letters and stenciled them onto the top part of the board. Then, I bought a compass to make different sized dots. I painted the letters and dots tonight, too, and I must say, I am pretty pleased with the results! I need to take a picture of it in daylight - tried to take a picture last night when it was dark, but the flash on the camera caused the board to be too light in some areas and too dark in others. So, when it's daylight, I'll take a picture of it and post it on this entry!

My inner child - the one who likes to color and paint and all that - had a grand time painting the dots and the letters! It's also an activity that can give you that zen-like focus. You just slow down, your breathing slows down, and you're focused on making nice lines, shapes, and giving color to the whole works. You're in the moment, in other words, and often times, you don't know what all you're thinking about. It was fun and, better yet, really colorful, too! Eddie is with his dad for a few days so I'm hoping it's all dry by the time he comes home . . . I hope he enjoys it!

The next thing to do is for Henk to make the back support for Plinko, I need to make the numbers for the slots below. But rather than do just one set of numbers and paint them in the slots, I thought that I'd take poster board, cut it into the slot-sizes, put different denominations of numbers so that Eddie can change them when he wants, and then laminate them. So, I still need to make the numbers.

Then, Henk will tackle the Big Wheel that's used to choose contestants for the Showcase Showdown. I think we're going to attempt Cliffhanger, too. There might be two or three other games, but I don't think they will be as involved.

Bottling Up Emotions with regard to Health and Illness

Some of you know that I had a bout of adrenal fatigue last May, right around Mother's Day and a lotof it may have been due to stress. As a result of that fatigue, I started counseling to try to find ways to alleviate the stress.

One of the books my counselor recommended was called "The Dance of Anger" and the gist of it was that women in our society are socialized never to get angry. Instead they seek to please everyone, but ignore their own needs, including the fact that it is okay to get angry. Often, women like this (and I am one of them) wait until things get so bad - they get so angry - that it often explodes out of them. One trick is to acknowledge and express that anger before it gets out of control. (There are some women who do express their anger, but they are often denigrated and called "bitches", but that doesn't apply to today's post.) Also, women like this tend to think that if someone is mad at them, it's their own fault, not the other person's. So, on top of being angry, they then feel guilty about being angry because they don't feel they are supposed to be.

Obviously, while anger is one strong emotion women often deny themselves, sadness, irritation, frustration, etc., are a bunch of other feelings that we often don't acknowledge because we are supposed to always be pleasant and smiling and to do whatever is asked of us. Repressing your emotions and keeping it to yourself does have an impact on your health.

When I started acupuncture, Brodie asked me how I was doing emotionally and what my stress level was. One point she made is that, according to traditional Chinese medicine, problems with your breasts, i.e., breast cancer, is a result of bottling up your emotions. It blocks your liver chi, which then loses its ability to filter out waste and abnormal cells. So, she has been advising me to learn to recognize and feel all those emotions when they start to happen and then to let those emotions pass THROUGH me, to allow my liver to process it and let go of it and not harbor it inside where it can be harmful to my health. It's hard to learn how to do this because women are taught that we shouldn't express negative emotions.

For me, not sharing what's going on with my life - how I'm feeling, what's going on with my personal relationships and at work - also has the effect of bottling up my emotions. There was a time when I didn't share with anyone what was going on with me. I hid stress and sadness between a smile and a "I'm fine". So, in the interest of my health, I opt for being open.

Managing Side Effects

Currently, I am taking Tykerb, five pills every day. I also take Xeloda, but now my dosage is 2 pills twice a day, Monday to Friday, with the week-end off. I also had my Zoladex injection in my abdomen. One major side effect seem to be facial breakouts caused by all three, but Tykerb gives me little white zits while Xeloda gave me big angry red ones. I also have had some trouble sleeping, again caused by all three - Zoladex gives me hot flashes which wake me up and the other two have "trouble sleeping" as one of the side effects. I also had a bit of nausea. I think I have some lymphedema around my shoulder blades and my ribs on my back. This week, I also started getting some dry, cracked skin, right at the edges of my fingernails. And, finally, I get mouth sores, bleeding gums, and red sensitive lips.

For breakouts, based upon what my acupuncturist says about the level of "toxic heat" in my body, I started using an aloe vera gel on my face. It cools the skin and also has antibiotic properties. Then, I use a little bit of Clearasil on a breakout, but not all over, because when I did, my skin around my mouth and chin really starting drying up. I had that awful situation where my skin was flakey but I was still breaking out. So far, the gel and the small bit of Clearasil is keeping the red angry zits away.

For sleeping, I started taking melatonin. I'm up to 8mg/night and on that dosage, I've averaged about 6-7 hours/night. So, for the last week, I actually feel normal and have energy. People tell me I've been looking great (considering) this week and I do feel great. Thank goodness! I hate feeling tired. Also, I do a few things to quiet my mind like deep breathing and massaging my feet with lavender oil.

For nausea, I saw my acupuncturist and since then, my nausea symptoms have been almost nonexistent. Yay!

For the lymphedema, during my massage last week, the therapist did some lymph massage and that seems to help. I found out that lymphedema post-mastectomy is not all that uncommon. I had some slight swelling on my back that, when pressed, felt pretty tender. The massage therapist, Mary Jane, also said to wear under armor - tighter t-shirts that you see athletes wearing that do some slight compression. That slight pressure helps move the lymph fluid, since there is nothing pumping your lymphatic fluid around like your heart. Not sure how your body helps it move, maybe through the daily constriction and stretching of your muscles, but compression and massage help it flow. That's why they see things like tai chi or yoga help.

The company that manufactures Xeloda gave me a free tube of "Udderly Smooth" for the hands and feet. I started using that pretty religiously on the dry skin around my fingernails a couple of days ago and that seems to help, too.

And, finally, for the irritating mouth sores, my acupuncturist suggested swishing with aloe vera juice because of its cooling properties and also for its antibiotic properties. She also said that drinking peppermint tea also helps cool things down. What I've found is that the aloe vera juice help keep the sores from getting worse, but they didn't disappear. After drinking the tea the last two nights, I found that any mouth sores that I felt developing disappeared. Also, my whole mouth felt hot, but I could actually feel this wave of coolness in my mouth when drinking the tea. I've had peppermint tea before and I never had that feeling before, but now I can really feel it.

Anyway, just wanted to pass on some strategies for helping with side effects like this . . . they are relatively minor and now that they are coming under control, I feel good and am continuing to see improvement! Yippee! Thanks to everyone who suggested these strategies. Combined together, they do wonders for my mood! Happy Spring Break!

Imagine an Irish brogue for this one . . .

An emeritus professor here at OSU told me this joke. I don't want to get him in trouble so I didn't name names.

Okay, so you'll need to imagine this whole joke told in an Irish brogue. If you're anything like me, your Irish brogue sounds better in your head than when it comes out of your mouth. When I lived in London three years ago, I would try a British accent and my son often told me "talk regular, mom". So, proof of my lack of ability with accents.

Anyway, here's the joke - and I ask forgiveness of the joke teller if I don't tell it the way he told me. He told me yesterday . . . I blame chemo brain for not remembering it as he told me!

A man walked into a pub in Ireland, but he looked a mess, walking funny and his arm in a sling. The bartender said, "Hey, Paddy, what happened to ya? Ya look like you got hit by a train."

Paddy said, "Yeah, I got hit by something. But it wasn't a train."

"Well, what hit ya?" said the bartender.

"Well, that O'Shaunessy beat me with a shovel he had in his hand!"

"So, didn't ya have a weapon in your hand to defend yourself?"

Paddy replies, "Well, I had something in my hand, but it didn't make a very good weapon."

"What didya have in your hand?

"Mrs. O'Shaunessy's right breast!"

Unused Prescription Drugs, Part II - Oregon Legislative Efforts

Here is what I have found out so far about this proposed legislation. First, this issue was brought to my attention by Cath at the support group, who read this letter to the editor by Lucy Noone, of Benton County Hospice Services. The letter to the editor can be found at:

http://www.gazettetimes.com/articles/2008/03/18/news/opinion/6edi02_letters0318.txt

Scroll down to "Take precautions with unused drugs". She says that "Legislation is pending to force drug companies doing business in Oregon to create and pay for a program to take back unused drugs".

I tried to find said legislation and was unsuccessful so far. But I did find a report online:

http://www.oracwa.org/

The name of the report is "Drug Take Back Report". There are two .pdf files, one for the two-page executive summary and the other 100+ page report. The report is authored by Monica Hubbard, a Ph.D. candidate here at OSU. The report is fairly detailed and gives reasons for not having drugs flushed down the toilet and it also goes into various laws that apply and mentions programs in a couple of different states that do this. But I didn't quite find out what the drug companies then do with the drugs after they receive them from various drop-off agencies. I emailed her about this issue and when she writes back, I will post about it.

My initial thinking, open for discussion, is to figure out how one can collaborate on this issue. There was a whole task force here in Oregon committed to this issue and devising this report. So, there's already a system in place that maybe we can capitalize on. I'll let you know . . .

More thank yous!

I have received more cards from folks expressing that they're pulling for me, Norma Vega continues to give me dinners every Thursday, and I received some jokes - most of which I have already posted. I also have received replies from folks who are interested in the drug repository idea.

So, thank you to my neighbor, Mike Wolf, for sending me that newspaper clipping. Lisa at Hair, Body, and Sole gave me a gift certificate for a free pedicure - which I am using on Saturday! I decided to get my hair trimmed there while I was at it. Court Smith, who served on my master's degree committee and now a retired colleague, saved me a copy of the GT article.

Thank you to Theresa Hogue for writing that article, too. My average number of hits to my blog rose from 25/day to 40/day! Overall, I think my readers may have doubled! I decided to go ahead with the article in case it might help other people going through treatments and also to try to get more boob jokes. Also, to let people know that even though that dreaded cancer word, "metastases" now applies to me, it doesn't mean that I will die soon. I don't want to mislead people because not alll "mets" are alike - some are more aggressive and less treatable. I think that my mets are manageable and will allow me to live for a long time.

Joke givers included David Carlisle, Elena Maus, and there was one or two more.. . sheesh. Chemo brain!

As for the drug repository idea, I have had about 8-10 people respond and say they were interested in helping somehow. I've also sent an email to Sara Gelser to ask her how to proceed. I will write an email to you all in the next few days suggesting a plan of action. I also thought that we could start another blog, devoted to this issue. Cath from the support group mentioned that in there was a letter to the editor in Tuesday's GT regarding unused drugs. I will post about that later today, since there is apparently some proposed state legislation on the matter, having to do with requiring drug companies to take back unused prescription drugs. I want to look into it more because I'm not sure exactly what that means. But my cynical take on it is that this might allow drug companies to "double-dip" - people returned unused prescriptions to them, which they can then redispense and make more money off of it. But I don't know that for sure so if someone wants to enlighten me about that, I'm all ears! I shouldn't be so cynical and I hope that the "double-dipping" issue was already thought of by someone else!

Well, have a great day everyone! Thank you, everyone, again, for your support and your prayers!

Unused Drug Repositories

So, what are drug repositories? Apparently several states have created drug repositories which are places that people can donate their unused prescription drugs in order to give them out to those who cannot afford those drugs. I know that after my chemo treatments, I think I ended up with three different kinds of anti-nausea drugs because one or the other of them gave me weird side effects or because I no longer needed them. I think I ended up throwing out a whole month's supply of tamoxifen when I was diagnosed the second time because I no longer needed it.

Also, our local paper has recently published articles that relate to the amount of prescription drugs in our water supply. I think some people with unused drugs are advised to flush said drugs down the toilet. The article on drugs in our water supply is at: http://www.gazettetimes.com/articles/2008/03/11/news/community/7aaaloc02_water.txt

I cannot take credit for this idea. Jeanne Sather at The Assertive Cancer Patient (www.assertivepatient.com) wrote about this recently and I am finally wanting to do something about this, partly because various members of our local breast cancer support group seemed very interested in the topic last night. Rather than reinventing the wheel, Jeanne's posts on the matter are at the following website:

http://www.assertivepatient.com/recycle_drugs/index.html

I am going to contact colleagues on campus today and I've also contacted our support group to see how we can begin to get a drug repository here in Oregon. I figured we could write a letter to our local state representative, Sara Gelser, on the matter. And, I just thought that this might be something that local churches and social service agencies could involved with, too. Any other ideas would be appreciated!

Breasts as Buttocks Mimics by Desmond Morris - also not a post for young viewers

My colleague, Missy Cheyney, told me about this article . . . I still have to get a copy of it. But the point he makes is in answer to the following question:

Why is that humans, of all mammals, developed such large mammary glands, bigger in proportion than other mammals?

The answer, as I understand it, is that humans are the only mammals that have face-to-face sexual intercourse. All other mammals have sexual intercourse via rear-entry (that's the crude term - what is the more "official" term?). So, large breasts developed to mimic buttocks, which might contribute to greater desire on the part of males.

So, I guess that explains why men like bigger breasts. They're reverting back to their animal natures!!! Ha! : )

Warning - Following Cartoon May Not Be Appropriate for Young Viewers

At the urging of Jeanne, I have decided to post this cartoon. It's a situation that small-breasted/flat-chested women will never have to worry about!! An argument to stay small, to be sure.

Doing Okay, Despite Three Needle Sticks

I am beginning to get more sleep these past few days - I've had at least 6-7 hours in the past 4 or 5 nights and I even had one night of 9 hours. The sleep does wonders for my mood and energy. I have upped my dose to 8mg of melatonin - studies indicate that 75mg can be taken daily without any ill effects, other than feeling drowsy! But that's the point, right?

I also had my Zoladex injection today - that's the pellet that goes into my abdomen and is slowly released over a 28-day period. It shuts down my ovaries. No problems, there. But today was also a day for blood to be drawn for lab tests. Dr. Kenyon wants them drawn every two months. I warned the nurse, Joan, that my veins on the left arm are hard to stick. She found out the hard way. Anyway, I have three needle marks in my left arm. Sigh. That's a long-term side effect - scarred veins- of the adriamycin and cytoxan from five years ago. And, they wonder why my blood pressue goes up whenever I have to have my blood drawn.

I also started Xeloda again this morning. So far, so good. Still seeing improvement in the skin on the right side.

But, I may have some lymphedema from the surgery. I didn't realize until about 2 weeks ago or so that my back - around my shoulder blades and ribs - was tender until Scott tried to give me a back rub. He put a little bit of pressure on that area on both sides and I just jumped. I ended up concluding that I may have some lymph fluid backed up from surgery. I checked with my friend, the surgical nurse, and she said that there shouldn't be any pain from the drain areas, although they are still not completely healed up. And, Debbie, my friend Tammy's sister, who works at the hospital, said lymphedema on the back is a side effect post-mastectomy. I will mention it to Dr. Kenyon when next I see him. In the meantime, I had a wonderful massage from Mary Jane at the Heartspring Wellness Center. Mary Jane (who my friend Don just raved about the other night at cards) did lymph massage on my back, after Brodie (my acupuncturist) rubbed it with a scraper implement last week. I think it helped. Mary Jane also said to wear Under Armor (you know those tight shirts that you see football and basketball players wear under their shirts?) to try to help the lymph fluid move a little bit better. So, I found some of those at Joe's (still G.I. Joe's to me - I know they are getting away from the military connotation of G.I., but maybe if they kept the initials but made them stand for something else like "Game Innovators" or "Got Implements", it'd be easier on those of us who grew up with "G.I. Joe's"). We'll see how they work!

Oh, I forgot to wear green today. Luckily, I had a beaded bracelet with green on it that works. Happy St. Patrick's Day

Pardon me, have you seen my nipple?

(With thanks to Jeanne for suggesting an alternate way to punctuate the title. I have decided that that will be the title of my boob jokes collection!)

Warning - this is a story about the mastectomy/reconstruction part of my treatment . . . it will make you groan! Don't read it if you're queasy or offended by really frank talk.

So, on the left, non-cancerous side, I opted for a "skin-sparing mastectomy". Well, skin-sparing on both, but on the left, we tried to save the nipple, too. So my surgeons didn't take the areola and nipple on that side. Well, there was apparently not enough blood flow to that area, so that nipple gradually started to dry up. So, here's this little quarter-inch tall scabby nipple there. My plastic surgeon said that the skin underneath it needed to heal, so we'll just leave it be.

About three weeks ago, when I got out of the shower, I realized that the nipple-scab had fallen off. Never noticed it (still don't and may never have any sensation in that area)!! I have no idea when it fell out! I didn't see it anywhere. You know what Scott said when I told him it fell off and I don't know where it went? "I bet your cat found the nipple laying around on the floor and bit into it - and then wondered, 'what the hell was that'?" We both got a laugh out of that picturing the cat chewing but sorta sticking our her tongue wondering what the hell she bit into!!!

I told you it was bad! But you can't deny that it wasn't also funny! : )

@ Deanna Kingston 2008

Sleep - It Does a Body Good

As you know, one of the side effects I'm dealing with is having trouble sleeping. I've been taking melatonin and it's helping me some, but I am still struggling getting in those "z"s. I finally got about 9 hours last night and I needed them! I was so tired yesterday afternoon that all I really wanted to do was to go to bed at 3:30pm and sleep straight through. Kinda hard to do when you have a 7-year-old! I would've called my folks to help out, but they had plans and I know that Eddie's dad had a meeting, so I just used sugar to make it to 9pm. Eddie knows that I will get tired occasionally and if I just tell him, he doesn't argue. So, I watched "Pride and Prejudice" with Keira Knightley, Donald Sutherlin, and Judi Dench . . . hadn't watched it before and I enjoyed it! One of my friends, Susanna, suggested several months ago that that was a movie to watch, so I finally got around to it. Jeanne mentioned last week that she was rereading the book, so I figured I should check it out.

I know there are a lot of you out there who said they would help me with Eddie, but I didn't know I needed help until the last minute. So, I think I need to come up with a contingency plan if my family isn't available.

If I can just get more sleep, then I think I'll be okay through these treatments!

Men! Can't Live With Them/Can't Live Without Them - More Boob Jokes

Okay, I received a couple more jokes that I wanted to share with you. These two were sent by Elena Maus, who works over in our Biological and Ecological Engineering Department. Hope you enjoy them!

First, this picture of a "free mammogram". And, then this little story!

>> Students in an advanced Biology class were taking a mid-term.
>> The last question was, "Name 7 advantages of Mother's Milk," worth 70
>> points or none at all.
>>
>> One student found it hard to think of 7 advantages, he struggled
>> to think of things, but finally he wrote:
>>
>> 1. It is the perfect formula for the child.
>>
>> 2. It provides immunity against several diseases.
>>
>> 3. It is always at the right temperature.
>>
>> 4. It is inexpensive.
>>
>> 5. It bonds the child to mother and vice versa.
>>
>> 6. It is always available when needed.
>>
>> And then, the student was stuck. Finally, just before the bell
>> rang indicating the end of the test, he wrote:
>>
>> 7. It comes in such cute containers.
>>
>> He got an "A."

Thank yous!

I've already received some responses to today's newspaper article. I've received two jokes (one is below), the promise of a joke in person - it needs to be told in an Irish brogue or it doesn't work, apparently, and a gift certificate for either a manicure/pedicure from a local salon (Hair, Body and Sole). The owner of the salon (whose name I do not know yet) is a breast cancer survivor, too. Thank you, all!

The joke is:

When God created Woman, he gave her not two breasts, but three.
The middle one got in the way, so God performed surgery.
The woman stood before God with the middle breast in hand.
She said, "What will we do with the useless boob?"
And God created Man.

Also, one of the moms whose child is in my class has been giving me dinners - every Thursday for the past three weeks. I just wanted to tell Norma Thank you!! I love everyone's cooking but my own!

My colleague, Sunil, sent me the following link about drug names. It's an interesting process, for sure! Here is the link:

http://www.merck.com/mmhe/sec02/ch017/ch017a.html

The gist of it is that after it gets FDA approval, the company often chooses a "catchy" name that sometimes relates to the illness it's used for.

Also, I am struggling with blogspot about creating internet links in my blog. I got it to work once (after struggling for 30 minutes) and I think I'm replicating what I did before, but it hasn't worked lately. So, I'm sorry!

Inquiring Minds Want to Know . . .

An undergraduate student here in the department, Emily, is doing some work for me and through the course of that work, has expressed in interest in cross-cultural naming practices. One thing I've wanted to look at among the King Islanders has to do with naming so my attention is on names at the moment.

What I want to know is: why is it that many medications' trade names (not the more official medical name) have little-used or unusual letters as part of the name?

For instance, I am on Xeloda, Tykerb, and get monthly injections of Zoladex. There's a couple of "x"'s (by the way, how does one write the plural of "x" - when you want to point out the letter by putting it in quotes, but make it plural, too?), a "z", a "y", a couple of "d"s, a "b", and a "k". I know that Jeanne, at the Assertive Cancer Patient, is on Tykerb and Zometa. Another "z".

Anti-nausea drugs that I've used in the past include Kytril, Zofran, and Fenergan. Let's see, another "z", a "y", a "k", and now there's a couple of "f"s and "r"s.

There's a few "a"s in there, too.

Inquiring minds (at least mine) want to know.

My more cynical side says that by using these unusual letters in their name, the pharmaceutical companies make them memorable and hence more marketable. Emily's take on it (I just chatted about it with her) is that these names are not user-friendly, they don't roll off the tongue easily. Is this the company's way of continuing our discomfort? By giving us unfriendly names to go with the unfriendly drugs we need to use to stay alive?

Ah, my Xeloda

I'm doing okay on the Xeloda. Had a brief stint of light-headedness yesterday but overall the nausea seems nonexistent. I think I figured out what exacerbates the nausea and what doesn't. But, I already started getting mouth sores - on the inside of my cheek and another on the tip of my tongue and some of my gums are bleeding again. I had a salad last night with vinaigrette and although not too spicy, it did burn my mouth and my lips. Swished with the aloe vera juice and that seems to help. The tips of a couple of my fingers are tingling and/or getting number. So, I'll call my doctor today and just ask him about decreasing my dose even more.

Slept okay, although I woke up early. I think the melatonin is helping. The skin rash and the skin mets continue to slowly disappear! So, I can't complain too much. And, more of my daffodils bloomed yesterday! Yay!

Today's Article in the Corvallis Gazette-Times

Today, the local newspaper, known as the "G-T", published an article about this very blog. The link to it is:

http://www.gtconnect.com/articles/2008/03/11/news/top_story/6aaa01_kingston.txt

I'm not that thrilled about the picture of me, though. They didn't get my good side! LOL. It's okay, though. What can you do?

The other thing I might ask people who read the blog is to this: If you know my son, please don't tell him anything negative about cancer! He knows that I have a disease called cancer, that because of it, they had to take my boobs and also that I have to take this medicine that makes me tired and sometimes sick. It is not going to kill me. He doesn't need to be scared about that. By all accounts, even with these metastases and even if I do end up taking some form of medication for the rest of my life, I do have many years left in me. Better yet, it might be better if you didn't say anything at all. He knows what he needs to know. Thank you. I appreciate that.

And, remember, keep your tears and fears to yourself. Feel free to make me laugh, though! Thank you.

Back on Xeloda

Today, I started taking Xeloda again, although at a slightly reduced dose than last time - I take 3 in the morning and 2 at night. I really loved last week, when I didn't have to take it. I felt much better since some of the nastier side effects - the inflamed mouth, red zits, and slight nausea - were not present. On Tykerb, I just seem to have little white zits, and of course, trouble sleeping.

So, I stalked up on sweet-tasting carbs to help me counteract the nausea, as well as some diet Sierra Mist. I'm still using the aloe vera gel on my face and I plan to swish with the aloe vera juice tonight to maybe fend off the mouth sores.

I have an acupuncture treatment this week, which I'm sure will help me cope. But, so far, so good. No nausea today, just thirsty, so I'm trying to drink lots of water.

I was depressed earlier today - because I knew I was starting Xeloda again and also because I didn't sleep well last night. I'd slept well the night before, so I hoped that I would sleep well again. Being tired really does affect my mood.

I like being productive - I don't usually like to sit around watching TV all the time, especially when there's stuff to do around the house. I really wanted to be lazy, today, though. But I hadn't vacuumed in a couple of weeks and the cat is beginning to shed more hair, so I really wanted to get it all cleaned up.

I did get in a good walk today - it was gorgeous here - partly sunny and 60 degrees. The daffodils in front of my kitchen window started blooming yesterday and I saw some little pink buds on the flowering plum tree out back today, too. That's always good to lift one's mood!

Cancer Does Not Define Me

Through Jeanne at The Assertive Cancer Patient (www.assertivepatient.com), I've been reading the blogs of other cancer patients and survivors. Many of them state that while they have cancer or have had to deal with cancer, cancer does not define them as people. In other words, their lives are more than just cancer.

Two of them, that I can think of off the top of my head are Sara and Carver. Sara's blog is at: http://movingrightalong.typepad.com/. She specifically says that while she is an amputee, being an amputee does not define her and she tries to live as normal a life as she can. Carver's blog is at: http://carverblog.blogspot.com/. Carver says that she started her blog as a way to deal with melanoma and her treatments, but is now happy that her blog is more about her photography and her life than about melanoma.

I couldn't agree more and yesterday I attended an event that really served to remind me who I am as a person and what my work is all about.

First, a disclaimer. The history is below my interpretation of events and I may not always be accurate. If I've made mistakes, please forgive me.

The Confederated Tribes of Grand Ronde invited a whole host of us from Oregon State University to join them and their elders and other tribal members in celebrating the repatriation of a significant collection of artifacts that had been in Oregon State University's possession for 30 to 80 years. It included baskets, a few photographs (I think), mortars and pestles, and many other artifacts. These artifacts came from what used to be the Horner Museum and is now referred to as the Horner Collection. There is a whole history involved in how they came to be at OSU and I won't go into it here. However, in 1995, due to state budget cuts, OSU closed the Horner Museum. At the time, several of the Oregon tribes (including Siletz), including Grand Ronde, requested that if OSU ever deaccessioned the collection, to please consult with Grand Ronde, and the other tribes so that they may get their materials back before going to private collections. The then-OSU President said that he would. But then there was a change in administration. Our local historical society then entered into negotiations with our administration to take over the collection, but the negotiations left out the tribes. Needless to say, the Oregon tribes were upset.

In addition, OSU closed the museum in 1995 without ever complying with the Native American Graves Protection and Repatriation Act (NAGPRA). In addition to protecting Native American burial sites, the law also stated that any institution that received federation funds and who also held Native American human remains and other cultural artifacts, must report those collections to the tribes to which the artifacts might belong. Tribes can then claim these artifacts if they fall within certain categories. The institution then accepts a claim and through a long process, the institution and the tribe will hopefully reach an agreement to have those items returned. Then, they send the agreement to the National Park Service, the federal agency in charge of repatriation efforts. Once they agree, after they publish the intent to repatriation, items can finally be returned to tribes. (Trust me, that was the short version!)

Thus, in 2000, OSU began to put resources into complying with NAGPRA. This meant that OSU started conversations with the tribes, which then brought into question the negotiations between OSU and the local historical society. Eventually, an Oregon State administrative rule was created for this case (and which will apply in future cases) which gave precedence to Native American tribes to receive Native American artifacts from deaccessioned state agency collections.

I got involved in the repatriation process with the Horner Collection in 2002. The tribes and OSU had already discussions about the return of their items. Six long years later, after a significant amount of energy, financial commitment, and professional respect on both the tribes' and OSU's part, the materials were returned. The effort continued despite miscommunications and changes in staffing both at OSU and Grand Ronde. My own part in the whole process was small in that I actually did very little with regard to the day-to-day paperwork, documentation, phone calls, photo copies, etc. My role was of an advisory capacity.

At the celebration, the Grand Ronde tribal members expressed emotion and excitement upon viewing their materials, some of which they KNOW were made by their grandparents and great-grandparents, back into their own hands. They were also grateful to those elders and other people in their tribe that worked so hard to get those items returned. I certainly do not deny that it was the return of the artifacts that was most important. But for me, the most powerful part of the celebration was seeing all the people there who have touched my life in one way or another through these past few years. Those personal relationships have enriched my life and I am so thankful for them.

I have been fortunate to get to know the following tribal members. Although the descriptions of our relationships are brief, know that they are meaningful connections for me.

First, David Lewis, the current Director of Cultural Resources at Grand Ronde, was present. David and I met when he was an anthropology graduate student at University of Oregon. About 3 or 4 years ago, we began to co-author a chapter that eventually was published last fall in a book entitled "Teaching Oregon Native Languages".

Eirik Thorsgard, a tribal member and now on staff in the Cultural Resources Department, just completed his master's degree in anthropology at OSU last summer. I wasn't his main advisor, although I served on his committee. Last month, he and another tribal member, Bobby Mercier, smudged me (purified me using white sage and sweetgrass) along with one of their colleagues, Travis, something that has helped me more than I might realize. He and Bobby, along with several others, sang the blessing and prayer songs.

Eirik's wife, Misty, was also in attendance. I was her major advisor and she finished her thesis about 18 months ago. It was great seeing her, especially since a publisher contacted me last fall to ask if I knew how to reach her since they wanted to publish her thesis. I found out yesterday that this publication is almost out, or that they are about to finalize the agreement for the publication. I was happy to hear about the outcome of this publication, because it recognizes a significant effort on her part to improve her writing.

Lindy Trolan, who is on the Cultural Resources staff, was the primary liaison between the Grand Ronde and OSU through these six years. I know how hard she has worked to make this all happen.

There are other Grand Ronde tribal and staff members who worked very hard on this process, of course, but those individuals are the main ones I wanted to mention.

From OSU, there are many people, too, whose lives have touched mine and who worked on this effort.

First, and the one for whom I am most proud, is Brenda Kellar. Again, I was not her major advisor, but I served on her committee. Back in 2002, I had some money to hire a grad student. I hired Brenda and part of her duties were to work on the repatriation effort at Horner, since I had too many other demands on my time. She worked for four years there, eventually taking over for Keni Sturgeon (who I knew when I served on the board for the Jensen Arctic Museum and Keni was the director) I can't say enough for what Brenda did - the records were a mess, there were items that had been misplaced, but most important was the respect she showed the tribes and how well she worked with them throughout the process . Grand Ronde blanketed her with a Pendleton blanket (a big sign of respect) for all the work she completed. I felt very proud of her accomplishments!

Second, shortly after I started working with the Horner Collection, OSU hired Keni Sturgeon, the Director of the Jensen Arctic Museum, to work on the repatriation effort. She taught Brenda about museum collections and documentation and while working for us, she did what she could to straighten out the mess that was the NAGPRA effort at the Horner. She was able to come to the celebration - I hadn't seen her in a couple of years, so it was nice to see her.

Irene Rolston took over from Brenda, when Brenda left for another job in 2006. I was Irene's major professor. I recommended that she take over for Brenda because of her conscientious work ethic. Even though she was offered another position right beforehand that may have paid her more money, she decided that the work of the Horner repatriation effort was ultimately more important and she wanted to do what she could to see it through. Irene was also blanketed yesterday.

Also present was Cathleen Osborne-Gowey, her husband Jeremiah, and their 20-month-old daughter, Finn. I was Cathleen's major advisor in anthropology. She finished her thesis in June 2006, about a month before Finn was born.
A few months after Finn's birth, she started working on behalf of the Horner repatriation effort. Cathleen had worked for me for five years, both as an undergraduate and a graduate student. She and Jeremiah were an integral part of the King Island placenames project; Cat also went with me to London, when I taught there for a term, so that she could help me take care of my then 4-year-old son. Cat and I have a lot of history and now our families are tied through an Inupiaq Eskimo naming relationship - Finn was given the Eskimo name of Aunt Cecilia Muktoyuk, who died two months before Finn was born. The belief is that Cecilia is now part of Finn. Her name is UGathluq (the capital "G" is pronounced back in the throat, like you're swallowing it). UGathluq danced for many years with the King Island dance group in Nome and taught her children to dance, too. I'd always referred to Finn as "Miss Finn", but when I was holding her yesterday, I saw her intently listening and watching the drummers and singers of Grand Ronde. It was then that I resolved to start calling her UGathluq more often, because I figured that UGathluq's spirit revealed herself yesterday by really listening to the drums. I also resolved to make sure Cat and Jeremiah have DVDs of King Island dancing, for UGathluq to watch.

Angelo Gomez, Director of OSU's Affirmative Action and Equal Opportunity, has headed the Horner Repatriation effort for the past three years - he took over for Orcilia Forbes (who was also there yesterday). He spent a considerable amount of time at the beginning trying to understand the history of the Horner and the events that had transpired over the years. He and I, along with his wife Patty, have developed a friendship, that started through this professional relationship. I feel privileged to know them both and I appreciate the support they've given me through these cancer treatments.

My colleague, Loren Davis, of "My Xeloda" fame (see an earlier post), kept me company yesterday driving back and forth to Grand Ronde. We had a great conversation about our respective research and other happenings in our department. He was Eirik's major professor.

Other celebrants included Robert Kentta, the Cultural Resources Manger for the Confederated Tribes of Siletz Indians. I was happy to see him - it'd been awhile. He and Lindy worked very closely together through all of the repatriation negotiations.

Most of these people have supported me in multiple ways as I negotiate cancer. But that wasn't why we were there, yesterday. We all witnessed the culmination of years of hard work on everyone's part to accomplish this repatriation. It was very emotional for me - tears bubbled up occasionally. But it wasn't until last night that I realized why. While part of it had to do with the return of these meaningful artifacts to the tribe, the rest of the emotion was there because so many people that I know and respect and even love were also there and also because I was proud of all the effort that went into this repatriation. I am proud to have been part of the whole process.

So, this is my story. It is events like this that make life worth living. Cancer does not define my life. But this is one thing that does.

@ Deanna Kingston 2008

Plush boobs in Japan

Theresa Hogue, who is a reporter for our local newspaper, interviewed me yesterday for an article which will run next week. I'll post the link to it after it's published.

Theresa, though, is already finding me humorous things on the web related to breasts. Thank you, Theresa! So, in the interest of spreading the humor, please check out this blog:

http://www.pinktentacle.com/2007/10/funwari-milk-chan-breast-shaped-plushies/

Apparently, there is a whole world created for these "creatures" called Milk Village. Let me know what you think!

Visit with My Oncologist

Yesterday afternoon, I had an appointment with my oncologist, who wants to check in with me while I'm on Xeloda and Tykerb. I had several questions for him, which were, in no particular order: 1) adjusting my dose while on Xeloda; 2) what to do with the skin mets; 3) using melatonin for sleep; 4) his thinking about radiation; and 5) insurance approval for Xeloda and Tykerb.

Regarding Xeloda, he gave me permission to adjust my dose of Xeloda. His preference was for me to take it Mon to Fri and then off on the week-end (something about biochemical processes), but I told him that I am really enjoying my week off of it. So, for now he was happy with me trying to take only 5 Xeloda each day while I'm on it, instead of 6. He was fine with me skipping the last dose because of the mouth inflammation. He also mentioned something interesting: apparently, women in Europe are able to tolerate 8 or 10 Xeloda each day, while in the U.S., women seem to only tolerate 6 each day. Researchers aren't sure why, but are looking at environmental factors, such as our diet, or maybe what's in our water or environmental contaminants.

Regarding the skin mets, there were 2 or 3 small areas (i.e., a few mm long) that started to bleed a bit. They were around areas that were pretty dry, so he said to use a small bit of aloe vera gel to moisten it up. By moistening it up, we can keep them from getting larger. He definitely saw improvement - he last saw me on Feb 22, so he saw the improvement over a 12-day period on these meds. So, my eyes weren't deceiving me!!!

He didn't know much about melatonin so I mentioned to him the studies I found related to it. I posted about it last Friday. The thing I forgot to mention is that there are some studies, I think so far just done on rats, that show that melatonin stops breast cancer tumor growth. He wasn't able to suggest a dose. I started with 2mg a night (about 6 or 7 times more than is usually used physiologically) and it didn't seem to help. I went up to 4mg on Tues night and I couldn't even get to sleep! I went back to 2mg last night and slept for 4 hours straight! Yippee. I think I got up to another 3 hours the rest of the night, but I woke up a couple of times and stayed awake. I found some articles on the internet that show that one can take as many as 75mg/night without ill effects, other than feeling sleepy and drowsy. Another article said that elder insomniacs had better sleep with about 0.3mg. One site suggested 40-50mg/day if you are a cancer patient. So, I will monkey around with the dose and see what works. Liz, over at www.lizkreger.com, told me that she uses 5mg/night and that works for her. My oncologist's nurse said that a 3mg dose works for her.

Regarding radiation, my oncologist thought that my reasoning was sound in terms of putting off radiation until I really need it. He said that if the meds seem to be working on the skin rash and the skin mets, then radiation (a one-shot, local deal) wouldn't be necessary. We also assume that if it's working on the skin, then it must be working throughout my body. Yippee! again! If we continue to see improvement, then once it's cleared up, I can go back to getting "pumped up"! Cool. It's kinda weird being half-filled.

He also said that insurance approved the Xeloda and Tykerb, without any extra say-so on his part. My thinking? That giving me Tykerb/Xeloda is cheaper than having it administered via IV, because not only do you have to pay for the meds, but also for the trained personnel giving the meds. Taking pills works for me! Better than having a port or having my arm/hand stuck with needles every so often!

So, yep, it was a good visit. I took my folks out to dinner to celebrate!

Hat Day

On Monday, Eddie's school had "Hat Day". There's one thing I can say about my son and it's that he's kinda fearless and likes to be the center of attention. I was never that way - I was the shy, bashful type that found it hard to get up in front of the classroom to teach. I'm over that, but it's taken years. I've also dressed conservatively, not wanting to call attention to myself. Trying to change that, too. So, with my son, I've been trying to encourage him to have confidence to be bold and make statements or have fun with his appearance so that he doesn't have my hang-ups. For that reason, I asked him if he wanted to wear this pseudo-Viking hat I bought for him in Denmark almost three years ago. It has horns and there were bells on the horns. He was all for it. Before we left the house, I asked him if he liked the hat. His reply was, "Yeah, it's cool."

I forgot to take a picture of him in it, so I had him put it on again last night. Then, I noticed that the bells on the end were missing and I asked him about it. His story is as follows:

"Those three first-grade girls started chasing me [at recess] because they thought the hat was cool! They even pushed me down once, but it only hurt a little bit. They got the hat and the bells fell off. They gave me the bells, but I lost them. It's okay, though."

My first thought, with one of those smiles to myself was, "and so it begins" - meaning, of course, boy and girl interactions.

I was able to ask the first grade teacher today who the girls were and she pointed them out to me at recess. The girls and Eddie were sorta chasing each other again. Does this mean I'm in for many more years of this? LOL

My Xeloda!

I was chatting with my colleagues, Joan Gross and Loren Davis, about the side effects that I experienced this week-end related to Xeloda. You know, the inflammation I felt around my mouth and the angry zits on my face. My face seems almost normal now and so does my mouth. I am so glad to be off the Xeloda this week!

Loren, who has one of the quickest wits that I know, said that I should compose a song to the tune of "My Sharona!" Remember that song? Here's a first stab at it.

Ooh my little orange pill, my orange pill,
Hate to take you twice a day, Xeloda!
Ooh you make my mouth burn, my mouth burn.
Hard to keep the sores away, Xeloda!
I can't wait to stop, give it up,
All the zits, from these drugs,
are the pits. My my my i yi woo. M M M My Xeloda . . .

I can't quite get that next to line right. Does someone want to help here? Does any one else have ideas for verses two and three? I actually had to google "my sharona lyrics" in order to figure out Verse #1. It's kinda fun . . . at least, I've always enjoyed making up silly rhymes.

Thanks, Loren!

Unexpected Expenses and Environmental Concerns

My washer died on Friday night. Scott was doing a load of laundry and the damn thing stopped spinning. He and my brother-in-law, Henk, looked at it on Saturday and decided it wasn't worth saving. I'd bought that washer and dryer set for $150 almost three years ago. I figured I got my use out of them.

I decided I should just buy a new washer as I don't think I've ever purchased a brand new one before in my life.

Now, I'm a tree hugger . . . that is, I try to make environmentally friendly choices. Sometimes that's hard to do as these choices are smore expensive. But I opt in to the Blue Sky program at Pacific Power - which means I pay a few dollars each month to purchase electricity from sustainable sources. I am trying to pay most of my bills online. I bought Marmoleum last year for my kitchen/dining room floor - it's all natural and doesn't release VOCs into the atmosphere like conventional linoleum. Plus, it has some kinda cool designs. It was a bit more expensive, but not by much. I'm trying to cut out my dependency on bottled water and to go back to using tap water. Up until two months ago or so, when I had the flu, I reused plastic water bottles by filling them with purified water from my tap. When I caught the flu (and I didn't want Eddie to get it), I started buying a case of bottled water a week for the past couple of months. That meant that I was using and discarding 100 plastic bottles a month. Not good.

Also, there has been a lot of publicity recently about plastic bottles leaching chemicals (sometimes carcinogenic) into the water, especially when the bottles sit in a warm car (the same for chemicals released from plastic in the microwave). For that reason, I just bought two quart-sized glass pitchers that fit into the door of my refrigerator so that I can have nice, cold water to drink. I use purified water from my tap to fill the pitchers. Eddie and I both prefer our water cold.

Water is also something that environmentalists say we need to start conserving. So, when I shopped yesterday for a new washer, I eventually decided that I needed to buy a front-loading washer, which uses 1/3 to 1/2 the amount of water that a conventional top-loader uses. I don't pay a lot each month for my water (about $40/month), but I will hopefully see some difference. It also uses less electricity. The motor is more powerful, so it'll spin more water out of the clothes (which also have been immersed in less water), which means that it won't hopefully take as long to dry (i.e., less electricity). The new washer gets delivered on Monday. Good, because the laundry is also starting to pile up! It was a bit more expensive. I think, though, the extra I spent will pay for itself in a year or so. I also get some peace of mind in terms of doing what I can for the environment.

I should also say that I bought the water from a local business, Stover, Evey and Jackson. They have a flat $35 delivery fee. The price of the washer includes installation and they will also take the old washer away to recycle. We bought my refrigerator from them almost 7 years ago. The technicians were great - they took the extra time to turn the doors around to the way I wanted them. Friendly local service.

Limitations of Medical Tests and Chemo Toxicity

The life of a cancer survivor (because while I'm a patient, I'd rather be thinking of myself as a survivor) is never dull. I mean, no one's life is ever dull, but here in Cancer Land, it seems that there is always something going on. This week-end is a case in point.

I had an echogram of my heart last Monday, ordered by the cardiologist, who thinks that they are more accurate than MUGA scans for estimating the ejection fraction (EF) of your heart. (See my post entitled "I'm a Medical Puzzle OR Both Good and Bad News".) Dr. Kenyon called me Friday afternoon with the results. According to the echogram (which is an ultrasound of the heart), my ejection fraction is 65! Right up there in the normal range. A strong heart, etc.

So, Dr. Kenyon called the radiologist to ask about the MUGA results, which was 41 (below normal). The radiologist said, "It's possible that I underestimated it". Then he called the cardiologist, who said, "It's possible that I overestimated it".

Will this make a difference in how I'm treated? If you recall, the low EF was the grounds for not giving me onto Herceptin and putting me directly on Tykerb, a relatively new targeted therapy. Herceptin is given via IV and Tykerb is taken as five little orange pills every day.Dr. Kenyon said that, no, we'd continue with the current course. He even consulted with a breast cancer specialist who was down here from Portland. That doctor told him that if Tykerb seems to be working for me, then to keep with it, especially since it doesn't seem to affect the heart as much as Herceptin. I think (my opinion as I'm sitting here typing) is that I do have an increased risk of heart damage, because of the adriamycin I took before, so why push it? In other words, go the route where the long-term side effects may be lessened, which seems to be Tykerb. Okay. Fine with me.

Dr. Kenyon did say something along the lines that there are limits on these tests. I've decided that I'm going to average the two results, which gives me an EF of 53, which is normal. Cool. And, it seems that I won't have to worry about long-term heart damage while I'm on Tykerb.

On to chemo toxicity. Last week, on Tuesday, I started noticing mouth sores. My acupuncturist felt that my body was trying to rid itself of toxic heat, which was manifesting in the mouth sores, the dry skin on my face, how I felt thirsty and dehydrated, etc. I'd also started breaking out, first, with little white pimples, which is what Jeanne Sather in Seattle has had to deal with while on Tykerb. But the past few days, my chin and nose really started to break out with what I call larger, red, angry pimples. Then, Friday night and through Saturday, I noticed that my gums and my lips started to feel inflamed. One of the other moms of a student in Eddie's class brought me enchiladas for dinner on Thursday - I had some on Friday, too. (They were delicious, by the way!!! Thanks, Norma!) On Friday, when the enchilada sauce got on my lips or my gums, boy, it felt like those tissues were going to catch fire! They felt inflamed all through Saturday, even with the pizza I had for lunch. My acupuncturist did tell me to stay away from spicy foods. Now I believe her! I'm not sure I'd say it was painful, but it sure didn't feel good. So, I swished with the aloe vera juice several times last night, to cool things down. I'd also started putting aloe vera gel on my face - to cool things down, keep the skin moist, and hopefully the antibiotic properties of the gel would help the breakout.

I also decided NOT to take the very last dose of Xeloda for this two week period. (I take Xeloda for two weeks, then I'm off a week; I skipped the last dose on day 14.) I figured that my body was trying to tell me that I'd had enough. Guess what, I woke up this morning, and while I still had the little whiteheads, the red, angry, bigger pimples weren't there. My mouth and my lips don't feel inflamed and there's only one sore remaining. It was the right choice. I'll talk to Dr. Kenyon about dosing when I see him on Wednesday.