Today is "Z-Day", in which I get the Zoladex injected into my abdomen (shuts down my ovaries) and Zometa is given to me intravenously (strengthens my bones to make it harder for cancer to attach to the bone). I started Zometa two months ago - and have had two Zometa IV's. Each time, I ended up with a slight fever on Day 2 and general feeling of fatigue. Not bad in terms of side effects. It just means I take it easy that day. Good thing as today, I wanted to take Eddie trick-or-treating at the downtown merchants. He is going as a "Whammy", which is that little red Tasmanian devil cartoon creature that takes prizes away from contestants on the show "Press Your Luck". I'll take a picture and post it!
Friday, October 31, 2008
Dr. K's office called me yesterday - he asked that I come in and talk to him about what to do about the rib bone and we made an appointment for next Wednesday. Options, as I understand them based on the talks with Dr. H, Dr. M., and my wound care nurse, are:
1) Do a CT scan or a chest x-ray to see what, if anything, is going on with the bone. Is it infected? Or is there some necrosis?
2) In the meantime, continue monitoring the open wound for healing.
3) If the healing plateaus and/or the bone is infected, then surgery is indicated in order to either take out the bone and/or to cover the bone with some soft tissue from my lat.
4) Another option is to undergo hyperbaric oxygen treatments. Apparently, you sit in a chamber that is 100% oxygen for about 20-30 minutes, daily, for four weeks. It apparently does wonders in terms of healing wounds and my rad onc, Dr. M, said that people come out of the chamber feeling really refreshed.
5) Or, we may opt for surgery anyway in order to get some soft tissue over the bone to protect it. If I do surgery, I may have to go off of Xeloda and perhaps Tykerb and then I run the risk of the cancer growing again. Which then argues for what is the lesser of two evils, right?
Thursday, October 30, 2008
I saw the wound care nurse today and she felt that the wound has certainly improved over the last three weeks. I had a "peninsula" of good tissue on the upper left portion of the wound (i.e., left from my perspective) that's grown bigger. The area where there was a big hole through which the tissue expander went through has gotten smaller, in terms of diameter and it appears that there's more good tissue growing in from the right side. All in all, an improvement. I thought so, but it's hard to tell when you live with it all the time.
L., the nurse, has been taking pictures of the wound - there were two that were taken when I was undergoing radiation - and then she took pictures the day the expander came out and another two days later, before I got the wound pump. I got the heebie jeebies looking at those pictures! OMG - the hole that was there. I tried to describe it to someone last week while in Anchorage and said that I'd ended up with a 2cm hole in my chest. I thought I might've been exaggerating, but I wasn't! L., the nurse, said that she said it looked scary, although she didn't say so at the time, to her credit. I guess I knew it was serious, but not really how serious it really was. But that was then and this is now and it's definitely much better and is steadily improving.
Whew! Thanks to everyone who continues to send me good healing energy! It's working, apparently!
This is a quote from Marie Saclamana, an elder in my community. I would like to use that for the title of the article I'm working on about the density of King Island placenames. I went through and counted the names on Monday night, but realized that I'd ended up counting some names twice. So, last night, I double-checked the list. Drum roll, please!
There are 158 names for 164 places. In general, there are some instances where there are two places for one name. There's one instance in which there were three names (I think, but I need to call and double-check) for one place. But taking that all into account, there are 158 names for an island that's 3.5 square miles. That's a relatively dense place for names.
And, of the 164 places, 83 are rocks and another 17 are cliffs. Granted, King Island is a basalt rock that juts up out of the ocean and so there's just a lot of rocks on the landscape. But I think the fact that half of the named places are rocks is significant.
Marie was right, wasn't she?, when she said that almost "every rock" had a name! Thanks, Aakauraq!
Wednesday, October 29, 2008
My sis just sent this to me today, who just received it from an old friend of hers. I've been feeling tired all day and a little bit stressed about life stuff - bills, family, work - but this laugh was just what the doctor ordered! You'll understand my reference about "I haven't had the pleasure yet" when you see what it's about! Anyway . . . apparently, this was from Dave Barry's column:
This is from newshound Dave Barry's colonoscopy journal:
I called my friend Andy Sable, a gastroenterologist, to make an appointment for a colonoscopy. A few days later, in his office, Andy showed me a color diagram of the colon, a lengthy organ that appears to go all over the place, at one point passing briefly through Minneapolis . Then Andy explained the colonoscopy procedure to me in a thorough, reassuring and patient manner. I nodded thoughtfully, but I didn't really hear anything he said, because my brain was shrieking, quote, 'HE'S GOING TO STICK A TUBE 17,000 FEET UP YOUR BEHIND!'
I left Andy's office with some written instructions, and a prescription for a product called 'MoviPrep,' which comes in a box large enough to hold a microwave oven. I will discuss MoviPrep in detail later; for now suffice it to say that we must never allow it to fall into the hands of America 's enemies.
I spent the next several days productively sitting around being nervous. Then, on the day before my colonoscopy, I began my preparation. In accordance with my instructions, I didn't eat any solid food that day; all I had was chicken broth, which is basically water, only with less flavor. Then, in the evening, I took the moviPrep.
You mix two packets of powder together in a one-liter plastic jug, then you fill it with lukewarm water. (For those unfamiliar with the metric system, a liter is about 32 gallons.) Then you have to drink the whole jug. This takes about an hour, because MoviPrep tastes - and here I am being kind - like a mixture of goat spit and urinal cleanser, with just a hint of lemon.
The instructions for MoviPrep, clearly written by somebody with a great sense of humor, state that after you drink it, 'a loose, watery bowel movement may result.' This is kind of like saying that after you jump off your roof, you may experience contact with the ground.
MoviPrep is a nuclear laxative. I don't want to be too graphic, here, but: Have you ever seen a space-shuttle launch? This is pretty much the MoviPrep experience, with you as the shuttle. There are times when you wish the commode had a seat belt. You spend several hours pretty much confined to the bathroom, spurting violently. You eliminate everything. And then, when you figure you must be totally empty, you have to drink another liter of MoviPrep, at which point, as far as I can tell, your bowels travel into the future and start eliminating food that you have not even eaten yet.
After an action-packed evening, I finally got to sleep. The next morning my wife drove me to the clinic. I was very nervous. Not only was I worried about the procedure, but I had been experiencing occasional return bouts of MoviPrep spurtage. I was thinking, 'What if I spurt on Andy?' How do you apologize to a friend for something like that? Flowers would not be enough.
At the clinic I had to sign many forms acknowledging that I understood and totally agreed with whatever the heck the forms said. Then they led me to a room full of other colonoscopy people, where I went inside a little curtained space and took off my clothes and put on one of those hospital garments designed by sadist perverts, the kind that, when you put it on, makes you feel even more naked than when you are actually naked.
Then a nurse named Eddie put a little needle in a vein in my left hand. Ordinaril y I would have fainted, but Eddie was very good, and I was already lying down. Eddie also told me that some people put vodka in their MoviPrep. At first I was ticked off that I hadn't thought of this, but then I pondered what would happen if you got yourself too tipsy to make it to the bathroom, so you were staggering around in full Fire Hose Mode. You would have no choice but to burn your house.
When everything was ready, Eddie wheeled me into the procedure room, where Andy was waiting with a nurse and an anesthesiologist. I did not see the 17,000-foot tube, but I knew Andy had it hidden around there somewhere. I was seriously nervous at this point. Andy had me roll over on my left side, and the anesthesiologist began hooking something up to the needle in my hand. There was music playing in the room, and I realized that the song was 'Dancing Queen' by ABBA. I remarked to Andy that, of all the songs that could be playing during this particular procedure, 'Dancing Queen' had to be the least appropriate.
'You want me to turn it up?' said Andy, from somewhere behind me. 'Ha ha,' I said. And then it was time, the moment I had been dreading for more than a decade. If you are squeamish, prepare yourself, because I am going to tell you, in explicit detail, exactly what it was like.
I have no idea. Really. I slept through it. One moment, ABBA was yelling 'Dancing Queen, feel the beat of the tambourine,' and the next moment, I was back in the other room, waking up in a very mellow mood. Andy was looking down at me an d asking me how I felt. I felt excellent. I felt even more excellent when Andy told me that It was all over, and that my colon had passed with flying colors. I have never been prouder of an internal organ.
ABOUT THE WRITER> Dave Barry is a Pulitzer Prize-winning humor columnist for the Miami Herald. On the subject of Colonoscopies... Colonoscopies are no joke, but these comments during the exam were quite humorous..... A physician claimed that the following are actual comments made by his patients (predominately male) while he was performing their colonoscopies:
1. 'Take it easy, Doc. You're boldly going where
no man has gone before!
2. 'Find Amelia Earhart yet?'
3. 'Can you hear me NOW?'
4. 'Are we there yet? Are we there yet? Are we there yet?'
5. 'You know, in Arkansas , we 're now legally married.'
6. 'Any sign of the trapped miners, Chief?'
7. 'You put your left hand in, you take your left hand out...'
8. 'Hey! Now I know how a Muppet feels!'
9. 'If your hand doesn't fit, you must quit!
10. 'Hey Doc, let me know if you find my dignity.'
11. 'You used to be an executive at Enron, didn't you?'
12. 'God, now I know why I am not gay.'
And the best one of all.
13. 'Could you write a note for my wife saying that my head is not up there?'
Tuesday, October 28, 2008
Still waiting to hear from Dr. H or Dr. K about the next step - so I still don't know if I'll have an x-ray or a scan. That's okay - I'm not any particular hurry.
In the meantime, I attended an interesting talk on cognitive anthropology and then went to dinner with the guest speaker, Eugene Hunn, who has worked a lot on ethnoecological kinds of issues. He published a comparative study on placename densities back in 1994 (or was it 1995?). I kinda told him about this article I'm working on and he said he's interested in reading about it. Even gave me some suggestions about where to submit it for publication. I'll meet him and my colleague, Bryan, for breakfast tomorrow and I hope to ask him a few more questions - I may even show him the placename lists we've toiled with this past week and get some of his input.
Hmm, guess I better go double-check those numbers, huh? : )
Also heard that an article that I cowrote with an anthro grad student at UAF has been accepted for publication at Human Organization (the main journal for the Society for Applied Anthropology) pending some revisions. The revisions don't seem very onerous and in fact, the reviews seemed rather positive and had some good suggestions. Woo hoo!
This is when I realize just how much time the placenames project took - there was a lot of administration and organization with that. I seem to have more time for writing now. But I must say, all the time was worth it. We've been working on this project for five years now and I'm still not tired of the general topic (I was, however, tired of doing all the administrative stuff). It's like my dissertation - I worked on the research and writing of it for about three years - and I'm not tired of that either.
I love my job.
Monday, October 27, 2008
I need to fix my son dinner, so I will try to make this short.
I met with my plastic surgeon today to talk about reconstruction options and also so he can look at the wound.
FACT: The deeper open wound where the tissue expander popped through in August is still healing (I think) but it is very shallow. There is no soft tissue, other than this white plaque/scab, over the rib bone there.
FACT: I am still on an oral chemotherapy (Xeloda) regimen as well as Tykerb, Zometa, and Zoldex.
FACT: I am no longer a candidate for an implant on the right side as that tissue is too damaged after being radiated twice.
FACT: Surgeons don't like to do surgery on people who are immunosuppressed, i.e., people who are on any form of chemotherapy.
FACT: I have attained a "stable" status in terms of my cancer.
UNKNOWN: Whether or not I can have reconstruction on the right side.
UNKNOWN: The possibility exists that there is an infection in that rib bone that only has this scab over it. If I understand Dr. H correctly, if there is some sort of infection there, then that might keep that whole area from really healing. However, I do not have a fever and I do not have any other symptoms of an infection. The wound looks good and clean.
NEXT STEPS: An x-ray and/or some kind of scan to determine whether or not there is an infection in that rib bone. If so, I may require surgery to take out that bone in order to allow the rest of the bone and the tissue to heal. If I do have surgery, then Dr. H would do a lat flap (latisimus dorsi) flap procedure in order to bring in some soft tissue to cover the bone so it can heal. I may then also be able to have some small breast reconstruction on that side. I may have to go off of chemotherapy prior to surgery, but my question is whether or not that means all four of those drugs (Xeloda, Tykerb, Zometa, Zoladex) or just Xeloda. Xeloda is the only true chemotherapy drug I take. Tykerb is a targeted therapy, Zometa strengthens my bone, and Zoladex shuts down my ovary production. Maybe, just maybe, I only have to go off of Xeloda.
NEXT STEPS, Part 2: Keep monitoring the open wound. About half of the wound is healing. The half that is slower to heal is where the tissue expander poked through. If the wound plateaus and doesn't heal, then we look at surgery so that it can heal otherwise I risk getting a bone infection and I have to go off of chemo. If it does heal and if Dr. K (my oncologist) says it's okay for me to go off of chemo, then I may be able to have reconstruction.
So, it's a wait and see game. It never occurred to me that I could get a bone infection! I don't have any symptoms, but more than likely, there is some bacteria in that wound. It's not infected (we don't think) because I don't have a fever or have any other symptoms. The dressings I use there have antimicrobial properties which help keep things from getting infected. But if no soft tissue ever grows there, I run the chance of getting an infection since there is only a really thin superficial scab-like thing over the bone.
Dr. H, the plastic surgeon, isn't quite sure what to do with me as he hasn't had a patient who is taking oral chemotherapy. He and Dr. K have to talk. Dr. K was of the opinion that I couldn't have reconstruction but the reason he gave me was because of the damaged tissue in that area due to radiation. But Dr. H thought that it may also be due to having to go off of chemo.
Confused? I was, but I think I have my story straight. It's complicated. Why can't I/my body take the easy/simple solution?
Sigh . . .
It was a beautiful day out there today - probably in the mid-70s. I am relatively rested from my trip. I'm generally in a good mood. There is much that I'm thankful for! Thanks for your continued support everyone!
Sunday, October 26, 2008
I'm sorry that I wasn't able to blog this past week ... it was a busy one! Fairly successful, too, even if I do say so myself. Yesterday, after packing and checking out of the hotel, Teddy (King Island elder), Larry (our linguist), and I worked on placenames for about four hours. We double-checked spellings, duplications, translations, and some locations. We each were working off of several lists. It got confusing at times, but in the end, I think we have a "near final" version. I say "near final" because I think this placename list will ever evolve, depending upon input from others. I need to make changes to the spreadsheet this week and will send it to the rest of the research team.
I showed the proposed web design on Friday evening for our interactive map to a few community members: Teddy, Agnes, Becky, Joe, Aleta, Rudy, Clara, Grace, Cindy, mom, Grace's son Kian, Eddie, and my grad student, Danielle. All thought it was a great design and are anxious to see the "final" result up and running, which might not be until summer. I received some feedback, the most important of which was to make sure that I copyright it to the King Island Native Community and that I put a copy of our Intellectual and Cultural Property Rights statement with the map.
On Friday morning, I saw Matt Ganley, the guy who is creating our photo-map. He said he would try to get something to me soon. If I don't, I am instructed by him to "keep kicking me in the butt" to get it. If other King Islanders want to help me "kick his but", please feel free to do so!
Community member, Jimmy, made a couple of ivory beads for me to give to Scott - he wanted one for his pierced ear. Jimmy, ever the joker, told me that he was only going to charge me $30 and that he gave me a $100 discount. He knows he owes me. Can't tell what he owes me - but I thought I'd just say he owes me anyway.
I sat and listened to a session about the energy crisis in rural Alaska on Friday morning. Turns out that many rural (mainly Alaska Native) communities are experiencing a rather large out-migration due to high energy costs. One person, Orville Huntington of Huslia, mentioned that he spent $950 for two barrels (I think they were 50-gallons each) of oil for heating which would probably last two months. Other people from other rural communities, including the Bering Straits Native Corp, are turning to alternative energy sources. BSNC has recently turned on 18 small wind turbines to help with the energy costs. Charlene, the King Island Native Community coordinator, reported that King Island has installed a small wind turbine on our King Island community building which will basically take care of the heating in that building - she reported that it cost KINC $3000 every two months. Another community, Kwethluk, had to have emergency fuel flown in because the ice froze up, preventing the barge from delivering the oil. One person mentioned that in the wake of contact with westerners (i.e., Euroamericans), Alaska Natives started building houses above ground . . . which lose a lot of heat compared to the semisubterranean houses most communities used to have.
I would also state that the Anchorage Daily News has been doing a great job reporting on Sarah Palin. Larry, our linguist, stated that a lot of Alaskans are finding out more about her actions since she was tapped to be McCain's running mate - and what they are finding out about what she's done hasn't really gone over very well, in general. She had a tape-recorded message at the Alaska Federation of Natives on Thursday in which she promised to create a "subcabinet" for rural affairs. This idea received a rather cool reaction from AFN - they want an emergency task force created - not an extra layer of bureaucracy once removed from her office.
I was able to interview an elder from Unalakleet about the Alaska statehood; I also interviewed Teddy and then another woman whose father was opposed to statehood. I've interviewed four people total and Brenda has done some good archival research for me on the Inupiaq view of statehood.
I also interviewed a couple of people about Alaska Native Corporations, including the president of BSNC. I also found out that a board member for BSNC lives in southern Oregon and I plan to visit her to interview her as she's been involved for a long time. All the stuff I read in the Anchorage newspaper will also contribute to that project.
I was also very fortunate to see many many KIs there in Anchorage. I want to list them all, but I'm still trying to settle in at home after my trip - things like laundry, Eddie's homework, getting my checkbook caught up, ironing, etc. I will list everyone I got to see later ... it was a really really productive trip, I think. I only wish I could've done more interviews, but I think I set too many goals for this trip. That'll just mean I have to go back to Alaska! Sooner rather than later!
Thank you - everyone!! - for the trip. Becky & Joe and Teddy & Agnes & Cindy fed us and several people sat with me for an interview - Teddy, Sylvester, Tim, Fran, and Dixie. I owe so many people thanks...but I need to remember! So, as soon as I do and I have time, I will thank everyone!
Monday, October 20, 2008
with light winds. That's the forecast for Anchorage today. Needless to say, we arrived safe and sound in Anchorage on Saturday afternoon. After getting our car and grabbing lunch, we headed to Aunt Becky's house, where she proceeded to feed us for about 5 hours. First, it was tea with this cranberry pumpkin bread she made - OMG, it was moist and delicious. I was still full after lunch, so I just ate a small bit and then kept grabbing more because it was so good! Then, after a bit, I took Eddie and Danielle to check in at our hotel. Danielle is my new grad student. Then, we returned to Becky's house an hour later and she served pot roast, complete with potatoes and carrots, and smoked salmon that they made themselves. Followed by grapes and mini candy bars, more tea, and more of everything else. We left about 7pm and then went to Freddies, got groceries (we have a kitchenette in our room), then got to the hotel and settled in.
Yesterday, we had a slow morning - we were all tired - then we went to the new Dena'ina Convention Center (where AFN will be held) because they held an open house. We looked around. On the top floor, there was a ballroom, and among other things was this "Dancing Heads" display - they were demonstrating how it worked. You sit in front of a green screen with a green cape on and then they play some stock music video. Eddie really wanted to do it, so we grabbed mom and the three of us danced our heads to Super Freak. It was really fun and quite funny, too. Then they give you a DVD to take home. It was free. Eddie watched it later at Teddy's and he laughed and laughed and laughed and we had the whole room laughing, too.
Then, at Teddy's, we started visiting, but it was clear that Teddy wanted to work. I'd wanted to interview him for the Alaska Native corporations project, but he wanted to work on placenames. So, we went back over my list - we spent three hours working on it, had dinner, and then spent another 2 to 2 1/2hours on it. WHEW! But we got through the whole list and I found out which ones were true duplicates and which ones are names that name two distinct places. We had the big map on the table, we heard stories, we decided on spellings and translations. Sylvester showed up right before dinner and he helped out, too. It was hard work - especially for the two men as I was tired and sometimes didn't quite understand their explanations.
They fixed a "white man's" dinner and then niqipiaq (Eskimo food). The white man's dinner was roast beef and mashed potatoes, the niqipiaq consisted of moose meat, half-dried seal meat, aliuGaq (sour dock), tugayuq (another type of greens), alluk (Eskimo ice cream - berries mixed with fat and sugar), seal oil, and the roasted veggies that were with the moose meat. They'd also made Eskimo fry bread - I think they used a doughnut recipe. Gosh that was good! Then, it was followed by tea and pie.
Of course, there was lots of visiting, too. Fun stuff!
On the schedule for today - head over to the Elder's and Youth Conference - hopefully run into people we know - and then maybe meet people I've heard of because I want to try to get interviews with them related to Alaska Native corps and the Inupiat view of Alaska Statehood. This afternoon? Who knows? If I don't have any interviews scheduled at that time, then Danielle and I might head to an archives to see what archival documents we can find related to ANCSA.
Good thing I brought the jeans that are too big around my waist . . . I think we're all going to roll onto the plane to go home on Saturday! : ) Yummers!
Friday, October 17, 2008
So, Laurie at Not Just About Cancer, has just tagged me for these meme. I've seen other bloggers get tagged, but this is a first for me! And, I just found out what a "meme" is, too, although I'd read about them. According to Wikipedia, "A meme (pronounced /miːm/) consists of any idea or behavior that can pass from one person to another by learning or imitation. Examples include thoughts, ideas, theories, gestures, practices, fashions, habits, songs, and dances. Memes propagate themselves and can move through the cultural sociosphere in a manner similar to the contagious behavior of a virus." And, also according to Wikipedia, the term Internet meme is a neologism used to describe a catchphrase or concept that spreads quickly from person to person via the Internet.
Here's the rules for this tag:
1. Post the rules on your blog.
2. Write 7 random things about yourself.
3. Tag 7 people at the end of your post.
4. Pass on the tag.
I've finished packing for my trip to Alaska - whew! - and am trying to wind down to go to bed early tonight. I'm tired, but excited to be going. Okay, here's my seven random things about myself:
1. I like cats much much than I like dogs.
2. In the fall, winter, and spring, I like to drink a soy chai tea in the morning.
3. My late Grandpa Kingston called me "Dede Bum". Mom still calls me "Bum" to this day.
4. Both of my brothers have longer hair than I do.
5. I get motion sickness easily and can no longer go on rides that spin.
6. This week, my department chair (jokingly) gave me an award for having the "7th highest number of preps" (i.e., the number of lasses I've developed) in the department. That's out of 9 people.
7. I cannot carry a tune - my son tells me to stop singing if I do sing along to a song.
I tag Misanthropology, Carver, The Cheeky Librarian, Jeanne at Rock the Bald, Liz at Literally Liz, Doug and Theresa at Type-Cast.
Have a great week-end! I may get a chance to post after I arrive in Anchorage - but maybe not until Sunday. Mom said that Aunt Becky said that all the snow has melted in Anchorage. It'll still be chilly, though!
Wednesday, October 15, 2008
I'm so proud of myself! I got six pages written today on the article about placenames! Woo hoo! Yippee skippy! Well, technically, it was five pages since one page was references. But still! That doubled the number of pages I'd written to a total of 10 (including references).
Woo hoo! Or did I say that already?
I'm pretty relieved, too, because this puts me in really good shape to complete it by the November 1st deadline. Whew. I now have a pretty good vision of the rest of the article, too. I may end up with another 8-10 pages, which is a respectable length for a paper. (By the way, it's at a line and a half spacing - if I used double-spacing, I'd probably have about 13 or 14 pages now.)
All the time I invested in studying the list and finding duplicates served me well. It was also good preparation for my trip to Anchorage on Saturday - I now have a good handle of the questions I need to ask in order to be confident that our place-name list is as accurate as we can make it.
Speaking of the Anchorage trip, I think I'm in relatively good shape there, too. I've started gathering files and other materials that I need for the trip (informed consents, etc.); I have a decent list of people I'd like to interview; I have a power point presentation to show community members in order to get their feedback on what information I should include on our interactive map; I have a prototype interactive map to show; I have my audio recorder and camera ready to go - well, I've given them to my new grad student, Danielle, so she will know how to use them so that she can handle the technical stuff and I can do my interviews; I've notified community members and two of the researchers I've worked with that I will be in town - one has responded and will join us for a day or two of finalizing placename lists. I still haven't found a room to show the powerpoint, and the other researcher has not responded to several emails and a phone call - not much I can do there. Overall, I'm in good shape; I know which community members will be in Anchorage from Nome (thanks, Charlene!!); and I've lined up one or two interviews already. Mom was pretty happy to hear that my cousin, Rudy, will be there. Her cousin Gemma will be there as well. Overall, I think it's going to be a great, productive trip. And, Charlene and her son will be there.
My counselor today noted how different I sound about this trip than I did about the Greenland trip in August - she noted that I sounded more enthusiastic and energetic. I have this "I will go" rather than "I guess I'll go" attitude.
Weather forecast: temperatures ranging in the 20s to 30s for most of our visit. Probably some snow and it looked like it might be partly cloudy or cloudy through the weekend. They were expecting an inch or two accumulation yesterday, an inch today, and another inch tomorrow.
Yes, it'll be strange going from 65 and sunny yesterday to 20-something and snowy on Saturday. But I'm looking forward to it. I haven't been to Alaska for a year. I miss everyone! I miss the atmosphere. We're going during AFN - the Alaska Federation of Natives convention. There's always an aura of excitement and expectation. Fun stuff. I"m excited!!
BTW, I read the newsletter for ICC-Alaska yesterday. ICC stands for the Inuit Circumpolar Conference and it's the organization that meets every four years and brings together Inuit from Siberia, Alaska, Canada, and Greenland in order to lobby for certain political actions that will benefit all groups in the four nations. The Alaska office this past year applied for a grant from the Alaska state legislature to run a culture camp in Southwest (Yup'ik Eskimo territory) Alaska. Culture camps are camps where Alaska Native youth (or Native American youth here in the states) spend a week or more with elders, learning about traditional culture and language. Apparently, the Alaska state legislature approved the grant proposal . . . but Sarah Palin vetoed it and I don't think they were able to hold the camp. That might give you a clue as to who will get my vote this year ...
Tuesday, October 14, 2008
The past few days here have been gorgeous . . . and I guess I could take some pictures and post them, but . . . I'm too lazy. Would rather go out and enjoy it!
Work is busy, but I think I might be getting caught up . . . or maybe that just means I forgot to put something on my "to-do" list!! Ha!
I studied my placename list yesterday and by the end of the evening, my head was spinning. My first goal was to try to come up with a classification system for the names. But as I sat looking at the names, I realized again (after not really spending a lot of time with this list in the past year) that there were duplicates. So, I decided to get rid of duplicates. For instance, one name (Kurutiq) shows up three times as #20, #41, and #106. It really is only one place. This list has been worked on by various people over the past 4+ years, by different people, and one thing that happened is that when someone remembered a name, they tended to add it to the list without consulting the first part of the list. So, there are several instances of that. I also had to consider slight changes in spellings and make some judgments as to whether or not it was really the same name or a different name.
Then, there's the cases where one name is used for two different places. King Island is roughly triangular. The village is in roughly themiddle of the south or bottom side of the triangle. Near the two corners are two places that are both called "Uivayaq", which means "coming into view". They are named such because as the boats round the corners from the sides of the island, the village eventually "comes into view".
So, in trying to come up with a total number of names, I had to eliminate duplicates first. Then, I had to decide whether I count "Uivayaq" as two separate names or one . . . what do you think? Then, do you count a place that has what is called a "topographic generic". For instance, the main fresh water source for the village was a place named "Kuuk", which is the general word for "creek". They often use it as a formal placename - like calling a river, "River". So, do you count that as a discrete name since it specifically refers to only one place? Or, not?
Anyway, I stayed up late looking at this list. It was kinda fun and also interesting, but a bit confusing because I often couldn't remember what I'd decided about something ... I'm trying to write an article related to the total number of names on the island, so having a somewhat accurate count is important. Just wish I had more time to really delve into it!!!
Sunday, October 12, 2008
On Friday, I mentioned I was already way too busy at work. It's been an interesting process going back to teaching again after 15 months off for my sabbatical. I forgot that not only is there teaching, but meetings (at least two next week), weekly lectures in my department which I organize (meaning, getting folks on the schedule, getting their titles and descriptions, etc.), weekly meetings with my research assistant, plus I have another grad student working on the King Island gallery and map, and I may soon start collaborating with another grad student on my boob jokes article. Then, there's two grant proposals due here in the next month and I've had to make revisions to a draft of a preproposal and I also had a teleconference related to a project we proposed last year but didn't get funded - we want to try again based on reviewer comments. And, I need to write an academic article to submit to a journal by November 1st.
Yeah right. Uh huh.
I leave in a week to go to Anchorage for a week to work on THREE different research projects: one interviewing leaders in my Alaska native corporation and doing some initial interviews regarding case studies related to Alaska native corporations, another project interviewing Inupiaq elders and leaders that relates to their view of Alaska's statehood - was statehood a good thing for Alaska Natives, and other meetings to continue trying to tie up the King Island placenames map. For the last one, we want to show King Islanders the interactive map that my friend and web designer (Greg Hyatt) has created, get their feedback on the design and ask for input on what to upload into that map. I will also work with our elder, Teddy Mayac, and hopefully others, on the pronunciation and spelling of placenames - last year, we got about 130 of the 165 completed. I've been wanting to finish those spellings and pronunciations for a year - that's when breast cancer came knocking on my door again.
Regarding the boob jokes article, I decided to ask Courtney to coauthor that article because of the work she just completed on her master's thesis, which was on young breast cancer patients and whether or not their docs talked to them about their reproductive options. What she found was that the docs often don't inform them of all of their options because they either don't know or don't have experience working with young (pre-40s) premenopausal women. Something she said in her thesis defense gave me an idea of how to frame my article on boob jokes. At this point, I just have a glimmering of an idea and the two of us need to sit down and chat some before moving forward . . .
Do you see why my mind was spinning? Trying to stay on top of all these projects and students is challenging. I'm out of practice, having just returned from sabbatical. But I'm remembering that LISTS are my friends.
My mind is clear this morning, though. I haven't really thought about work much since Friday evening - so 36 or more hours of not thinking about work really helps to stop it spinning. I needed the break from thinking about it. Scott and I went out for a few hours on Friday, then yesterday, we had coffee and did a bit of shopping, then I drove back towards home and picked Eddie up at Bauman Farms, which is a great place to celebrate the harvest season (lots of activities for kids - hay mazes and corn mazes, big slides and swings in barns, zip lines, apple cannons and slingshots, peddle cars, pumpkins, plus great fall plants and foods for sale in their store). He'd gone there with his dad and it was on my way home so I picked Eddie up there. I think this is the 4th year in a row that one of us has brought Eddie to that place - it's become a tradition, now. It was made even greater by the beautiful, sunny, fall weather. A high of about 60. The lighting, with the low sun, was definitely a fall light - beautiful.
Then, yesterday evening was card night at Rick and Tammy's house. Josh and Amy brought their three-month old son, Steven. What a cutie! He had dark hair and blue eyes. A few rounds of cards, lots of bad (but good) snacks to eat. Let's see, there were fresh-baked chocolate chip cookies, animal cracker cookies, jelly bellies jelly beans, red licorice, popcorn, chips, crackers and cheese, beer or other mixed drinks, jokes galore, and a household of people. That 1500-square foot house hosted 24 people (including 9 kids), two dogs, and one cat. It's chaotic and crowded, but no one seems to mind. We played hand-n-foot in one room and another group played Texas Hold'em poker. The kids played on the Wii in the laundry room/pantry.
It was fun. Just what I needed. Week-ends - The Cure For Work!
Friday, October 10, 2008
I heard from Liz today. She's doing okay, but the scans found a 2cm tumor on her liver and she will probably have to have surgery to remove it. She is also looking at more chemo for new spots in her bones. Her tumor marker jumped from 90-something to 160-something in just a couple of months. She's having trouble logging into her blog and her tech is also having problems, too. I suspect that she'll be back at it after it's fixed. In the meantime, continue sending out good thoughts for her . . . she was the one person who contacted me to tell me what kind of side effects she has from taking Xeloda and Tykerb. She's also going on her seventh(?) recurrence of breast cancer. I think she's been battling this disease for almost 13 years?, something like that. Think of her when you see those pink ribbons. Liz is kinda like a mentor for me - she's got a take-no-prisoners approach and the spirit and energy that makes you wish that this disease can be knocked out of her body for good. Thanks, everyone!
P.S. I'm doing well, if WAY too damn busy at work. My mind is going a million miles an hour after two conversations on two completely different but new projects and a lecture I attended. Sheesh . . . better update my "to-do" list. What the heck did I promise this time? : )
Thursday, October 9, 2008
A couple of weeks ago, I had an entry about some of my fellow bloggers and asking you all to send out positive energy for them. Teri, over at the Cheeky Librarian, had some good news about her liver - her docs don't think it's cancer so she's breathing a sigh of relief. Jeanne in NYC at Rock the Bald is apparently enjoying the 70s and 80s music that the radiology techs play for her during her appointments. Carver is doing well and taking some great fall photos - she's trying to get motivated to exercise more regularly.
Unfortunately, Liz, at Literally Liz, has not blogged for a couple of weeks. Her blog won't let me leave comments and if I can ever remember, I plan to write her an email. She left a comment on my blog about the fact that something seemed to be cooking somewhere and that she might be in for some more treatments. I'm a bit worried about her, so please, continue sending out good thoughts for Liz.
Hell, we all need them. But Liz needs some special consideration.
Thank you all - I think I'm doing really really well because of the good thoughts and energy you're sending me!
Wednesday, October 8, 2008
Last week, when I had my "Z" Day, I found out the results of the tumor marker blood tests for September - great news there! This month, the news is still good, but both numbers went up a bit. Nothing to be concerned about, according to my doctor's office and to my colleague, Sunil. They expect these numbers to fluctuate a little bit - might be because I was fighting an infection (and my son, Scott and his daughter were all sick last week) or a change in the weather or whatever.
Anything below 31 is considered "normal"
Sept 2007 - 23 U/mL
Jan 2008 - 31 U/mL
Mar 2008 - 36 U/mL
June 2008 - 23 U/mL (started radiation that month)
Aug 2008 - 18 U/mL
Sept 2008 - 14.5 U/mL YAAAAAAY!!!
Oct 2008 - 19.6 U/mL
Sunil said that another month or two at these low ranges would mean that the disease is stable and under control.
The CEA results are below. 3.8 and under is normal:
1/2008 - 1.2 ng/mL
3/2008 - 0.9 ng/mL
6/2008 - 1.0 ng/mL
8/2008 - 1.1 ng/mL (need to double check this number, but it was in that 0.9 to 1.2 range)
9/2008 - 0.5 ng/mL
10/2008 - 0.9 ng/mL
I reported earlier this year that they aren't quite sure what it's measuring, so I asked my colleague if he knew. The way I understand it is that when a tumor cell dies, it leaves waste (lisosomic??) and the CA 15-3 measures the amount of this waste. CA stands for carbohydrate antigen. Normal cells, when they die, also give off this waste, but it is at a much slower rate than the rate of growth and death in tumor cells. So, the higher the number, the more likely that there are tumor cells growing and dying. He also told me that while this test is not necessarily a good indicator to diagnose metastases or it's not useful in early breast cancer, it does measure, fairly well, how tumors and cancer cells respond to treatment. Using these markers are better than subjecting patients to CT scans (radiation) or bone scans every month.
So, everyone, let's keep those numbers stable, shall we? Hopefully, I'll keep it in the less than 20 range!
I haven't posted a Mandala of the Month (MOTM) since July . . . there was too much going on in August and September. At any rate, here is what I've done for October. The blank one looks like: (will upload the photo as soon as blogger lets me)
I entitled my coloring "Happiness is Floating in a Snow Globe". Please forgive the tone and the out-of-focus look - it's my camera and I tried to fix the color, but I wasn't very successful.
When I talked to Maureen, the Mandala Lady, at her shop, she said that this month's mandala has a lot of circles which look like bubbles. Bubbles reminded me of Eddie's toddlerhood - he loved bubbles and usually giggled when we blew bubbles. So, I thought I'd make something in cheerful colors. When I looked at the circles, I saw shapes. The first one was the shape of a dog, kinda like those dogs that balloon artists make with those long balloons that they twist around into various shapes. So, I added a circle or two and made it a dog. I did the same with other dots, adding more circles to create various shapes, like a teddy bear, a snow man, ducks, the sun, faces, etc. Then, the line that Maureen drew through the circle sorta reminded me of a landscape - or a snow globe with a scene on the bottom and air above - so I kept the color schemes between the two somewhat separate.
Overall, it's whimsical and cheery, which more or less describes the mood I've been in these past couple of weeks with regard to my health. What a change from Slow Burn, which was the June MOTM, huh? : )
Monday, October 6, 2008
Twice in the past few weeks, I have either asked about something and/or suggested to do something at work . . . now guess who gets to do them? One has to do with a conference that will be held in Portland next October and the other with a grant preproposal, due mid-next week.
I think I need to keep my mouth shut, huh? : )
No other news to report ... just doing well health-wise and trying to keep up at work!
Friday, October 3, 2008
One year ago today, I found out that I had breast cancer again.
My first diagnosis was on August 15, 2002. I had a lumpectomy with sentinel node dissection, four rounds of AC (adriamycin and cytoxan), 6 1/2 weeks of radiation, and then 4 1/2 years of tamoxifen.
One year ago today, I was stunned to learn that it had returned (if indeed it had ever left and tamoxifen kept things at bay). My cousin Toni was here visiting and she took some pictures of me and had others take pictures of her and me at that time. My eyes looked haunted - like a deer caught in the headlights. I'll have to see if I can locate those photos - I think she sent them to me.
I hated chemo the first time and I had no desire to do that again. However, the pathology report stated that my "tumor" was only 3mm. So, while stunned and scared, I was also quite hopeful that I would have surgery (a bilateral mastectomy) and reconstruction and be done with the whole thing.
One year ago today, if I had known what I was in for . . . I might've crawled into a deep dark hole and never emerged. I might've been overwhelmed by all that has happened to me.
But it seemed that I had reason to be hopeful. So, I started collecting boob jokes and had a Boob Ball. Injecting humor into my diagnosis and then recovery seemed to make people more comfortable and able to talk to me about it.
I could talk about all the bad things that happened. But I already have. Been there. Done that. It's all (or most of it anyway) is in my blog. I could also talk about the pink ribbon marketing and how irritating it is. But I refuse to let all that pink ribbon stuff get me down. It's not worth it for me to talk about it.
I'd rather talk about the positives.
Sunil (one of my colleagues) told me today that from the research he's found regarding tumor markers and specifically the CA 15-3, doctors tend to think a good result with Stage IV metastatic cancer is if the tumor marker numbers decrease by 5-10% from its high point and stays there. Let's see. A 5% decrease would be 1.8 to 3.6 points, giving a tumor marker number of 34.2 to 32.4. My marker was 14.5.
That's a decrease of 60.4%, people!!
And, the other marker - the CEA - has had a decrease of 45-55%.
- I am feeling better - more energetic - and sleeping better at night.
- I feel happy and at peace - I have tried to do a lot of work dealing with some of my core psychological issues, like holding onto angry and frustration and the feeling of not belonging. I've learned a lot about myself. I think it has made my relationships with my friends, family, and colleagues much better than they were previously.
- My son is healthy and doing well in school.
- Scott and I are back together and his daughter is doing better, too.
- I still love my work.
- I have made many new friends, both in person and through blogging.
- I live in a great place, surrounded by natural beauty.
- I'm learning to balance my work with my life.
- I started tapping more into my artistic side - with coloring and creating mandalas and the mosaic in the backyard.
- I have collected a lot of boob jokes.
- My tumor markers are well within the normal range and there is no evidence of disease in my skin.
- I have learned a lot about alternative medicine and I really like the people who give me care.
- I am thankful for all the support that everyone has given me - I am truly blessed.
- I am thankful for all of my care providers - my oncologists, my therapist, my acupuncturist, and my massage therapist - and my plastic surgeon. People often ask me why I didn't seek care out of my small college town, but I've found all that I need right here.
- My family has been really really wonderful.
I bet I could go on and on and on and on. The important thing is that I'm here and doing well and moving on. It's been a very challenging year and one that I hope I never ever have to repeat it in this lifetime.
But, it's also showed me what wonderful people surround me. Thank you all!
Wednesday, October 1, 2008
Today was what I am now calling a "Z" Day - now when I go in to get my monthly Zoladex in my abdomen (Zoladex shuts down my ovaries), I will also get Zometa intravenously. Zometa makes my bones harder and more difficult for cancer to lodge there - remember that the cancer was in my bone marrow, not on my bones. Zometa keeps it that way.
While I was there, the nurse mentioned that she was going to have to get four vials of blood for various tests - one each for the two tumor markers CA 15-3 and CEA, one for the CBC (blood chemistry - red and white blood cell counts), and one for a CMP (metabolic panel - i.e., calcium, potassium, etc.). I asked if they did the tumor markers last month and they did, so I asked what they were.
The CA 15-3 was 14.5!!! Down from 18 in August! The story of the CA15-3 levels are as follows (below 31 is "normal"):
Sept 2007 - 23
Jan 2008 - 31
Mar 2008 - 36
June 2008 - 23 (started radiation that month)
Aug 2008 - 18
Sept 2008 - 14.5 YAAAAAAY!!!
And, my CEA was 0.5. Normal is below 3.8. My CEA has been either 1.1 or 0.9 - three or four of them since Jan 2008. In September, it was half what it was earlier this year!
HOW COOL IS THAT!!!
When chatting with my oncologist (see that post here), I told him that now that we shut down the "cancer cell factory in the breast area", I could now turn my attention to my bones. He agreed that he felt the cancer cell factory was indeed shut down.
And, I guess it really is! Radiation, visualization, the meds, the herbs, acupuncture, qi gong, meditation, reiki, etc., is working, I tell ya!
Also, for the first time in a long time, my blood counts today were normal! Usually, I am slightly anemic with slightly low red blood cell and hematocrit levels. Well . . . they were in the normal range! My acupuncturist has me taking a Chinese herbal supplement called Gynostemma, which helps to "build blood". It says to take 3 to 5 3 times a day, which I was doing but when I started Xeloda and Tykerb, I started only taking 2 at night so as not to give my system too much to handle. A couple of weeks ago, after an acupuncture treatment in which we are trying to strengthen my blood (and also the bone marrow, which produces blood cells), I started taking 2 of them 2 times a day. Guess it's working, huh?
Not even having to get poked three times today will take away the good feeling associated with that news! (I jinxed the poor nurse today - several months ago, after someone poked me twice and didn't catch a vein, she came in and was able to do it. She said that I shouldn't have said that because she probably wouldn't be able to find a vein. Well, she couldn't. She felt really bad, so another nurse came in and found one. Got the job done.)
A good day, wouldn't you say? : )
I'll say it again, but stronger - it's a great day!!!