P.S. I am having technical difficulties figuring out how to post the audio .mp3 . . . I did it once but that was well over a year ago! Now I can't remember what I did! I'll post it as soon as I can!
While I was in Nome, Laureli Kinneen, the public affairs director at KNOM radio station, interviewed me about the King Island placenames project. KNOM is the "oldest Catholic radio station in Alaska" and broadcasts over a 100,000 square mile area. It is an "Alaska Radio Mission". What I like about KNOM, as opposed to radio stations down south, is that you never know what you will hear playing on the radio: rock music, country, Eskimo songs from all over, prayers and rosaries, educational bits such as the one I heard about a particular bird whose name escapes me, Alaska Native elders interviewed, plus local news items. Laureli interviewed me as a "KNOM Profiles" which airs throughout the week, I think.
Here is the .mp3 of my interview:
Laureli asked that I give proper credit for this Profile: KNOM, P.O. Box 988, Nome, Alaska, 99762
I got a little emotional at the end and because of that, I wasn't able to talk about all the elders and community members who worked on the project, not to mention the scientists who have helped, too. I apologize if I happen to have missed you!
Thursday, July 30, 2009
P.S. I am having technical difficulties figuring out how to post the audio .mp3 . . . I did it once but that was well over a year ago! Now I can't remember what I did! I'll post it as soon as I can!
Wednesday, July 29, 2009
I got home a little after 1am last night and for some g*#d#mn reason, I couldn't sleep. I was restless and wired. I finally got up and went into the living room about 2:45am and read a book for awhile. I went back to bed about 3:15 and I think I slept, but I woke up at 5:30, 7:15/30, and then 8:30. Tried to get back to sleep, but I only dozed, I think.
So, I'm really tired today. It doesn't help that it's already about 100 degrees - according to my thermometer outside my kitchen window. It's in the shade, not in the sun, too. 100 degrees in the shade. Criminy.
Luckily, the house is about 80 thanks to two air conditioners - one in our bedroom and one in the living room.
Today is Eddie's birthday. He turns 9 years old! No big Price is Right game this time - although he does want to play karaoke. I need to find a good functioning karaoke machine before Saturday. My cousin Toni baked him a cake on Monday before we left - so we had cake and ice cream. I just took my folks and my brother and Eddie out to lunch to celebrate, too.
I'll need to go into work tomorrow, if only briefly to turn in receipts and such. But mostly I think I'll use this week to rest up and prepare for Eddie's birthday. I just need to find some time to write!!
So, what did I accomplish while in Alaska? Coordinated activities so that our science team could work together - elders with Kim and Larry on birds; elders with Jesse and Larry on plants; elders with me, Larry, and Matt on the map; five interviews (wanted 10 but what can you do?) - two on Alaska statehood and three on Native corporations; made some inquiries about hiring a community research assistant; consulted with various folks to find more people for more interviews (laying the groundwork for the September trip); went picking tugayuq (a type of green) for awhile with elders; an interview in KNOM (will post the mp3) and with Kawerak; and then fun stuff: two birthday parties (my own and Eddie's), two Eskimo dances; hanging out with various communities members and visiting and eating eating eating. Lots of people cooked for me, which always makes me happy!
Not too shabby for ten days, huh?
A huge thank you to everyone who fed me (Toni, Gemma, Charlene); to Toni who housed me, who took care of Eddie for me (mom, Toni) or who played with Eddie (Toni's kids; Stephen; Jaden); to people who allowed me to interview them; to the King Islanders for supporting the project; for the science team for working on this project; and for our birthday gifts - hand-knit King Island gloves, ivory earrings, a huge card, cake, a big picture of King Island village; and just for the experience of hanging out with all of you and reestablishing our connections. Thank you!
P.S. I was feeling a little down and depressed, mostly because I have no energy from not sleeping. That pisses me off when I can't sleep. But reiterating all that I have thankful has put me in a better frame of mind. Thanks to everyone for giving me the opportunity to say thanks!
Saturday, July 25, 2009
I'm sorry I haven't posted much for the last week! I don't have easy access to the internet - my cousin Toni has internet at her home, but with the kids and Toni herself using it, I may only have a chance to grab a few minutes myself. We can sometimes get a wireless, but the signal comes and goes.
Then, so much has happened since I arrived! Our first day, we went to camp at Woolley Lagoon. It was fun seeing what kind of changes have occurred out there in the last three years. We rode with Kim and Will, both of whom are birders, so they taught us some about the birds we were seeing. We also saw an Arctic Fox on the way down the road - if I remember, I'll try to post a picture.
Then, on Monday, I ran some errands and then that evening, we had an Eskimo dance at Nome Eskimo Community. Turns out there were some filmmakers in town from Australia who were filming for National Geographic. They were filming a new series and Episode 6 (or was it 10?) was on Alaska. They were working with Matt, our archaeologist/mapper for the King Island placenames project, and Matt really wanted them to film the King Islanders dance. That was fun. Before that, we went to the Rock House on the Nome-Teller highway and the kids climbed up on top. When I went to AC, I also found a nice Columbia Sportswear shirt for $14 - down from $60.
Tuesday, I ran errands again and made phone calls. I was interviewed by KNOM in the morning (I'll post the mp3, if I get it) and in the afternoon, I agreed to an interview for a company that was doing interviews for a "cancer treatment company" that turned out to be GlaxoSmithKline, the makers of Tykerb. More on that later.
Then, Toni threw a birthday barbecue for me (I'm 45 now). Caroline gave me some ivory earrings, Gemma gave me some hand-knit gloves, mom gave me a big card that had the song Celebration on it, and Ugi gave me a blown up photograph of the village on King Island. I bought myself a new sweatshirt with a wolf dancer on it and the words "UgiuvaNmiugurugut" (We are King Islanders) and also "Setting a Precedent". There's a story there with the subtitle . . . and I'll try to tell it later.
Wednesday, I again ran a couple of errands, then I interviewed one of the Bering Straits Native Corporation's former board members, past President and also past-President of AFN. It was a really good interview. That evening, it was really warm and hot and we ended up with a thunderstorm. We tried to go to the beach but it started pouring down rain.
Thursday, I again ran errands, then in the afternoon, we worked with the elders on placenames and corrections to the map in the afternoon. Thursday night, Toni and her kids, Eddie, mom, and I went to the West beach in Nome and the kids played in the waves.
Friday, I gave a presentation at the Nome Youth Facility at the request of Charlene Saclamana and told them about the King Island project. Then, mom, Teddy, Iviana (Agnes), Aapak (Frances Muktoyuk), and I drove out to Nuuk, parked at Helen Pushruk's cabin, and picked tugayuq (a type of green) for 30 minutes. We ended up with four grocery bags full. In the afternoon, I interviewed two people at the BSNC offices - both interviews went well. In the evening, we went to the East Beach near the Nome River - Eddie played in the waves and mom and I collected beach glass.
Today? Not sure yet. My days unfold as they will. I'd like to go to the Senior Center. I may call a couple of people for interviews. We may go to Gemma's house and visit and also I need to sit and visit Uncle Edward for a bit, too. We may go to camp later. Who knows? I also need to pick up a receipt and also some more cash.
I really want to spend a whole month up here. Hmmm . . .
Overall, it's going well. I'm staying busy but also taking time to just hang out and "be". Have a great week-end! I'll think of you all today - it's going to be a high of 60 here and I see that it's supposed to be really hot down south! Have fun!
Saturday, July 18, 2009
Yay! We finally made it to Nome. We left Eugene at 6:40am (after leaving my house about 4:30am) and got into Nome about 8pm (9pm Oregon time). So, yes, 13 1/2 hours later . . . I'm back! I haven't been to Nome for 2 1/2 years. I've really missed it.
The good news is that not a lot has changed. My cousin Toni's house is relatively the same. The people I know here have not changed their phone numbers so it was easy to get into the groove to let people know that I'm here.
Everyone seems happy to hear from us. I'm happy to talk to them all again.
We had a good visit with Becky today and a really brief one with her daughter, Barbie, and kids.
We're relaxing at Toni's tonight - she and her family went to camp so we have her house to ourselves.
Tomorrow, we will go to camp in the afternoon - it'll take about an hour and a half to get there (with an arrival around 3pm), but since it doesn't get really get dark at night - it might be dusk-like from about 2am to 5am - we won't feel like we have to get home before dark! In fact, it's 10:30pm right now and it's as light out as if it were about 6 or 7pm at home.
One change was that Toni and her husband put blinds up in the room that we use when we're here. Last time, there were no currents, so even in the middle of the night, the light was getting in.
It's feeling a bit like it was in 2005 and 2006 when everyone gathered together for the King Island placenames project. That project was one of the best things I've ever done - it was surely one of the hardest, but in the end, it will be worth it. That same feeling of excitement is there now - maybe not to the same extent, but just getting to see people is fun.
Well, I really need to get to bed. I'm bushed! Have a great week-end everyone!
Friday, July 17, 2009
This will be just a quick post as I have a lot I'd like to try to do today to get ready for my trip to Alaska. Still got to pack and do several other errands!
I'm doing well - I've upped my Xeloda dose up to 2/day beginning on Wednesday the 15th.. Not experiencing much in the way of side effects now. I think my body's gotten used to it and/or my "attitude adjustment" (welcoming what it does) has helped. I'm glad I gave myself a week-end off and then started it over again.
Went to my friend's pool on Wednesday evening and then we grilled burgers for dinner.
Went blueberry picking yesterday morning, Scott and I then ran an errand, and then Eddie, my folks, Scott, and I went to Alsea Falls. It was a beautiful, if hot, day.
Running errands with Eddie today, then to my office to pick up some things, then back home to pack and do several other things like prepare Eddie's invitations for his birthday party.
Have a great day!
We leave at 6:40am tomorrow out of Eugene and land in Nome at 8:10pm. A long day, but worth it. Aunt Becky picks us up at Anchorage for lunch - we have a 5 hour layover. Toni will pick us up from Nome. Yay!
Tuesday, July 14, 2009
I love days like this.
After a lazy morning, my folks, Eddie, my nephew Connor, and I went berry picking at local farms. We picked 16 lbs. of raspberries and about 16-7 lbs. of marionberries.
After working up an appetite, we went to China Buffet for lunch. The boys enjoyed it as did we.
Then, my folks took Eddie and Connor to their house to babysit while I went into my office for awhile. I finally finally filed away this pile of files. Answered a couple of emails. Printed off some documents. My mom, in the meantime, cleaned all the berries and packaged some up. We plan to take some of our haul to Alaska for various people (Toni, Gemma, Toni's mom, and Charlene). We hope to carry some in our take-on baggage for Becky. I have never made freezer jam (or any other kind of jam for that matter) and hope to do so this week? (Remember, I'm not really the domestic type.)
I picked up Eddie and Connor and went home. Eddie's dad picked him up; Scott and I took Connor back to his house along with some berries for their consumption.
Scott and I then came back home, picked up some work, and headed to Big River, to eat dinner on their patio, have a beer or two, and do some work. I did a final read-through of an article that's been accepted for publication; Scott worked on his SOAP chart for massage school.
Our waiter (another Scott) happened to be married to Annalisa, who is an incoming master's student in Anthropology, who will work with my colleague Missy. Missy and her husband Andy named their baby girl Ninkasi, the Sumerian goddess of beer and the name of a brewery in Eugene. Scott (my boyfriend) and I drank Ninsaki Radient with our meal.
Funny coincidence, huh? To have a waiter whose wife was going to study with Missy, whose daughter is named Ninkasi, which was the name of the beer we drank with dinner. A full circle kind-of-thing.
Forgot all about the lung spots and the cancer today. I mean, I took my meds and herbs this morning and had the Xeloda after lunch. I didn't feel any real side effects today - perhaps a bit of light-headedness but it didn't last. But it was a perfect evening - hanging out with Scott, having some casual conversation with both Scotts, a good beer, a beautiful evening (sunny, blue skies, in the high 70s), good dinner, AND got some work done.
A girl can't ask for anything more, right?
Love it! No mention of cancer. Just living life. Enjoying the weather, picking berries, spending time with family, eating good food, getting some work done.
Why can't all days be like this? Love ya all!
On Sunday, I continued my plan of no Xeloda on the week-end - it was a fairly busy day. I was able to do some shopping and then I helped Scott scrape the last bit of grout off the tiles on my mosaic. My softball game was canceled and so a few of us went to Clod's to hang out. All in all, a good evening.
With my mosaic, we need to put an edge around the outside of it (what does one call that?) - someone suggested a thin piece of wood soaked in water so that it'll bend - and then there's a few places where it needs to be regrouted. And, yes, this time we will wipe the wet grout off the tiles before it dries! Then, put a sealant on the whole thing. And, then we put it out on the pedestal. Yay!
Yesterday, I was lazy in the morning. Then, my folks picked up Eddie as they were running errands and then I went to work. I sat in my office manager's office chatting with her about budget and accounting stuff and kept yawning and yawning. I then went in to my office, wrote some emails, got lunch, and worked on editing down an article that's been accepted for publication. Then, it was time to pick up Eddie, we ran an errand or two, and back home. I played v-ball last night (badly but fun), then picked up my nephew after his soccer practice. He and Eddie played all evening. Scott and I hung out and watched a movie, interspersed with The Bachelorette.
I took my Xeloda right with lunch. A couple of hours later, I experienced some brief dizziness and perhaps a bit of an unsettled stomach, but then it went away. It helped that I came home and ate something (for some strange reason, Xeloda makes me want to eat something sweet). I have also been thinking about that attitude adjustment - not dreading the Xeloda but rather welcoming it for what it's going to do to the cancer cells. Then, I was fine the rest of the evening, if a bit tired.
What's on tap for today? I think we are all going out picking berries (blueberries and raspberries). We means my folks, my nephew, and my son and I. Mom wants to bring them up to Alaska with us this Saturday. Then, off to my office to work a bit.
It's sunny again today - so it should be a good day!
Saturday, July 11, 2009
I keep forgetting to let folks know . . . I saw Dr. Kenyon on Friday and we looked at the CT scan and compared it to the one from April and I indeed saw the larger spots on the lungs.
We actually didn't talk about much. He asked what side effects I experienced on Xeloda and on Tykerb. In the end, he thought that I should go back on the full dose of Tykerb and as much of the Xeloda as is comfortable. I'll get another CT scan in three months. In the meantime, we'll monitor the tumor markers and the lymph node under my left armpit.
I took one Xeloda after lunch every day from Tuesday to Friday. I felt slightly nauseous and slightly dizzy every time, within an hour to two afterwards. I also get moodier - the nauseousness is frustrating. I also got pretty mad at Scott on Thursday night - it was a minor thing but I realized the next day that the anger was misdirected. I am angry about the cancer and there was also a couple of things going on at work that were annoying. Scott, unfortunately, got the brunt of it.
I also do feel more tired on the full dose of Tykerb.
My hot flashes are a bit worse.
So, I decided that I'd give myself a little vacation from Xeloda on the week-ends.
I had a busy day today. Went to the library book sale - Mom found a book called "Spaghetti Eddie" which fits Eddie perfectly - then grocery shopping, then back home and packed up to go to a former student's daughter's three-year birthday party (holy cow - how time flies!), then Scott, Eddie, and I went to the Philomath Frolic. Eddie got to ride the rides - we went into the Fun House with him and then Scott rode the Yo-yo with him twice. It was a bit chilly (high 60s, maybe 70) at the birthday party - it was outside at a park - and then by the time we got to the Frolic, the sun came out and it was quite pleasant.
I meant to invite Eddie's cousin over to stay the night, but time got away from me. By the time we got home to have dinner, I was tired. Scott is tired. So, we're all just taking it easy.
I took Eddie to the pool yesterday. I even got in myself.
I saw my plastic surgeon's wife who is a nurse on Thursday. She gave me another laser treatment to the TRAM flap scar which is kinda thick (about 1/4 inch) and feels like a cord. Then, Friday, I talked to his nurse on Friday about getting a tattoo for the areola/nipple. Basically, everything's healed up enough to do this. So, I may do this in mid to late September . . . I would like to maybe get a tattoo on part of the TRAM flap scar, but they say to wait until about a year after surgery.
So, I've been trying to take it easy - both last night and tonight. I colored mandalas both nights.
The plan is in motion. We'll see what happens next month. Although I don't like taking Xeloda, the fact that I experience side effects means that it's doing something. I choose to believe that it's doing what it's made to do - kill those flippin' cancer cells.
In one week, I'll be in Alaska! Yay! I saw several people who worked with me on the King Island project today and several of us get to go back at the same time. We're all excited! It will be soooo neat to be back among many of my cousins and other relatives! My mom is excited as well.
And, oh yeah, an OSU student that I knew from the Longhouse was at the birthday party today with her little one-year-old boy. I went to his birthday party a few weeks ago . . . and held him a lot and fed him apple cake. The week before his birthday, I got to hold him again during a baby shower. Today, he came right to me - he kept wanting me to get a balloon for him. Later I took him the park. Then, it was time for me to go and the little guy didn't want me to leave! His mom was holding him and then he held his hands out to me and then cried when I didn't take him! He's such a cutie - just adorable, big brown eyes, big eye lashes, and lots of hair.
It's nice to be wanted by such a little cutie! : )
Thursday, July 9, 2009
No new news today. I meet with Dr. K tomorrow and see what he has to say about the increase in tumor markers and the bigger lung spots.
In the meantime, I'm about up to a full dose of Tykerb again and have been taking a bit of Xeloda each day. Felt some nausea about an hour or so after Xeloda - gak! It's more like an upset stomach, so it's doable.
Other than that, I'm living my life - working, taking care of Eddie, hanging out with Scott, talking about plans for the future, processing conversations with colleagues, sitting on my patio on warm summer evenings, watering plants that I transplanted out there this spring, etc.
It's a good life. Got a good plan for those lung spots. Taking the drugs, but incorporating Renee's suggestion to "love the cancer to death; smother the cancer with love; laugh it to death". Got some work to do but I've started a new conversation with the things - I'm mothering them, soothing them, telling them that they don't need to be angry and wild (i.e., grow out of control) and I've told them, too, that if they keep growing, neither they nor I will be around much longer and that we need to work together, not at odds with each other. My cancer is part of me, you see. All people have cancer cells in them - most of the time, our bodies' immune systems can fight them; but for some reason (or a bunch of reasons), cancer cells in some people grow out of control. So, I'm telling them they don't need to be out of control - much like I comforted Eddie when he threw his (thankfully very few) terrible two tantrums.
I'm okay. Truly I am. I know I have all of your support and love. That helps - I keep telling you all that it helps. I don't want my saying it all the time to lessen the impact of how much I really truly appreciate it. I love ya all! Thank you!
Wednesday, July 8, 2009
A couple of weeks ago, the editor of a popular and high-profile organization that publishes a book series asked if I would be interested in contributing a chapter on the Arctic. I don't want to name who she worked for - primarily because my purpose here is to let the rest of the world know about this issue and not necessarily to point fingers at this particular institution/organization. I may do that at a later date, but for now, let's just say that I respect this organization, for the most part. I also would like to give that organization a chance to respond.
Below is the text of the email I wrote to this editor, declining the opportunity to write this chapter. I have edited out the organization, but it's more or less the same text. I also wove in some text I wrote in an email to a friend and colleague. I feel strongly enough about this issue that I thought I should pass it on.
After some careful consideration over the past week, and reviewing various materials to make sure I have my story straight as well as thinking about my current work load, I have decided that I honestly do not have time, nor the inclination, to write this chapter on the Arctic for [xxx]. I am respectfully declining this opportunity. I was quite flattered to be asked and I do appreciate your time in working with me.
I decided to review Tiger Burch’s book “The Inupiaq Eskimo Nations of Northwest Alaska” as a starting point in order to figure out whether or not I could actually name a “tribe” in Alaska. After reading his list of nations, I came to believe that when you started giving me names last week on the telephone that you might have been using Tiger’s list of nations. Thus, when you mentioned one name, such as “NuataaGmiut”, I answered that that was a “village” today, not a “tribe” in the same sense as the word “tribe” is used in the Lower 48. However, in the 19th century, it was an alliance of about 20 or so villages or bands that had from 1 to 6 houses, with each settlement holding from 8 to about 40 people. The people in these 20 settlements referred to themselves as belonging to that unique settlement but also belonging to a larger alliance that they referred to as “NuataaGmiut”.
Today, however, such “nations” do not exist in the same sense. Because of disease and then colonization by the U.S., these settlements were congregated into one spot for ease of dispensing government services such as a school or health care. These aggregations of many settlements into one village often exist today as an IRA (Indian Reorganization Act) tribal council, which is a “tribal” structure imposed by the United States government upon the Inuit peoples in Alaska. Thus, when you asked me what a “tribe” looked like among the Inupiat, I answered that each village was “tribe” because of its past history – a group of settlements banded together in the past and referred to themselves by a unique name, but often these settlements were forced to come together into one place by federal Indian policy. And, there were times when this policy forced groups who were traditional enemies to congregate together in one place – forcing groups who were stewards of particular places to live in another group’s place.
Hence, there is a dilemma here that I cannot and do not want to artificially resolve for the sake of selling a [xxxx] book. In the past week, as I thought about how to resolve the issue of how to define a “tribe” in the Arctic, I frankly found myself getting frustrated and pissed off. It just won’t work. I got angry because I felt that another western idea of “tribe” was being imposed on indigenous peoples yet again. That’s not how the Arctic works and unfortunately, based upon our conversation, it does not seem that [xxx] is willing to be flexible in the structure of this book. By imposing this artificial structure, for the sake of each chapter looking exactly the same, on the Native Nations of North America, the [xxxx] is obscuring the richness and diversity of Native America.
This morning, as I reflected on this whole issue during an acupuncture appointment, I remembered something that you said in our conversation last week. In particular, you said that in the process of developing a book, the [xxxx] “market tests” the structure and content. I assume they do this in order to figure out what books [should] look like and what they say in order to sell as many of the books (and therefore make money) as they can. Now, I understand that this is the prerogative of the [xxxx] and I am not questioning the freedom of the [xxxx] to do this. However, it occurred to me that what is happening is that [xxxx] is giving the American public exactly what it wants: THEIR OWN VIEW of the Indian Nations of North America, not what ACTUALLY EXISTS. In other words, [xxxx] is playing into the stereotypes of Native Americans.
Ethically, I cannot be a party to this process. If, however, [xxxx] wants to put together a volume that describes what actually exists, rather than what the unknowing American public THINKS to exist, I would be happy to contribute something.
For an example of the flexibility that can be brought together in a volume, Mark Nutall edited the “Encyclopedia of the Arctic” several years ago. While I haven’t read all three thick volumes, he does say in his introduction that he refused to put artificial ideas of how to define the “Arctic” but instead allowed varied definitions, whether it be based on the treeline, the Arctic circle, geopolitical boundaries, etc. He stated that he wanted the diversity of what is considered the “Arctic” to be represented in these volumes.
Quite frankly, I am dismayed that the [xxxx] is going this direction. It means that there is a lot more work that indigenous scholars need to do in order to educate the general public about our lives. With that said, I do want to thank you very much for this opportunity. I was flattered. Unfortunately, however, I do not feel that I can contribute the Arctic chapter under these circumstances.
Tuesday, July 7, 2009
As you all know, I had a CT scan last week. My doctor, Dr. K, called me with the results this afternoon. After getting the tumor markers yesterday, I wasn't too surprised to hear that the three spots on my left lung are bigger. He did say, however, that after three months time, they could've gotten a lot bigger. But they grew by about half a cm. The good news is that there aren't any other spots.
So, as I said yesterday, I'm going back on a full dose of Tykerb and I even started taking a smaller dose of Xeloda today. I haven't had Xeloda since December and my last full dose of Tykerb was in mid-January, before my surgery. Since April, I've taken about a half-dose of Tykerb (not consistently). So, that little bit of Tykerb probably helped to keep things from growing too much.
It was my little experiment to see if I could go off the meds. My dad called it "Russian Roulette". I found out that I can't. Things aren't really bad. It could be worse. So, I go back on the two meds and see how things go in three months with a new CT scan and I will also have my tumor markers monitored monthly. I probably won't take that chance again. I've got my son to raise, a life to build with Scott, my house to finish, and the Center for Indigenous Sciences to work on!
I was a little depressed yesterday - both from the tumor marker news and from some other things going on - and one of my friends told me that rather than fighting the depression and the envy, I needed to embrace those emotions since they are part of me - my shadow self. By embracing them, they lose their power. She also told me that I should love my cancer to death - not to my death but to the cancer's death. I need to laugh it to death. That requires a reorientation of my thinking but doable, I believe.
In other news, Scott's wallet was taken today - we think perhaps where he goes to massage school as the charges on his debit came from that same neighborhood. They stole about $200 before he discovered it. The bank will give him his money back - insurance covers that - but it might take a couple of days.
My acupuncturist told me that my challenge will be to retreat - start saying no - and make sure to balance all of my do-er/yang energy with yin/relaxing energy. My parent has been telling me to slow down. Scott wanted us to "chill" this week-end. I guess I best do that, huh? : )
So, not great news. Got a plan, though.
Take care, people! Love ya! Thank you all for your support!
Monday, July 6, 2009
I just got the results of my tumor markers. The CA15-3 was 22.1, the first time it's been over 20 since last August 2008. Anything under 33 is normal, but the fact that it's gone up is worrisome.
The other is the CEA which was 3.7. Anything under 3.8 is considered normal. However, that went up 0.7 points from 3.0, and before that went up 1.1 points from the month before that.
Conclusion: Who really knows? However, the fact that both numbers are trending up means that I need to step up the amount of Tykerb I take as well as maybe consider taking Xeloda. I'll try to ramp up Tykerb this week. I see Kenyon on Friday and I bet he will advise me to take Xeloda again. I'm waiting on the CT results, too, and that will tell me something then.
Crap. Well, I guess I tried an experiment and since I haven't taken Tykerb very much (not at all from about mid-January to mid-April and only intermittently since then) and now I see my tumor markers rising, I found out that the odds are that I still have cancer lurking around my system. My numbers had been so low for so long that I dared hope we nipped it in the bud. Now I know. So, time to move on and do things now to keep those numbers from going up any further. Right? Right.
Here's the tumor marker history:
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 (week of August 4th)
Sept 2008 - 14.5 U/mL YAAAAAAY!!!
Oct 1 2008 - 19.6 U/mL
Oct 31 2008 - 15.3 U/mL
Nov 28 2008 - 19.5 U/mL
Dec 30 2008 - 16.0 U/mL
Jan 22 2009 - 15.4 U/mL
Mar 2 2009 - 17.8 U/mL
Apr 8 2009 - 19.6 U/mL
May 5 2009 - 18.4 U/mL
June 4 2009 - 19.7 U/mL
July 2 2009 - 22.1 U/mL
Remember that anything below 33 is considered normal.
Here's the history for the CEA:
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
10/31/2008 - 1.2 ng/mL
11/28/2008 - 1.2 ng/mL
12/30/2008 - 1.1 ng/mL
3/2/2009 - 1.4 ng/mL
4/8/2009 - 1.6 ng/mL
5/5/2009 - 1.9 ng/mL
6/4/2009 - 3.0 ng/mL
7/2/2009 - 3.7 ng/mL
For the CEA, anything below 3.8 is considered normal!
Sunday, July 5, 2009
Laurie, who blogs over at Not Just About Cancer has a perfectly good breast prosthesis that she no longer wants. If you know someone who can use it, maybe you can refer her to Laurie.
Which reminds me, after my Boob Ball, I ended up with several fake or foam breasts (like the ones that come with the mastectomy camisoles), such as a pair of "knitty titties" (someone sells the knitting pattern for them online). If anyone can use them, please let me know and I can pass them on to you.
Seems like in addition to a drug repository, a prosthetic repository would also be quite helpful, huh? Hmmm . . .
I had a great 4th of July week-end - just the sort of thing to do so that I didn't obsess or worry about the CT scan results or my tumor marker results (blood taken on Thursday the 2nd). Scott and I went to Bend for the week-end to visit a friend and colleague (Beth) in her home. Beth was with us in Bergen, Norway. We finally met her husband, Chris, and we had a wonderful time.
Friday evening, Chris cooked fish on the grill - sockeye salmon from Alaska with this wonderful marinade that was, as Scott says, "the bomb". We had wonderful, interesting conversations.
On Saturday, after a lazy morning and a late breakfast, we went for a hike going upriver on the Deschutes River and ended up at a boat ramp. This was the same boat ramp I ended up at when my sister, brother, and my sister's family rafted down the Deschutes a few years ago. As we got closer, I noticed this lava bed across the river and the way that it looked against the sky/hillside looked familiar. So, that was kinda fun.
Then, we went back to their house to do preparations for friends who were coming over later for burgers, beers, and fireworks. Beth and Chris live near Pilot Butte, which was where the fireworks were set off. Very cool show!
Then, after another lazy morning and late breakfast, Scott and I headed back home.
Beth and I also got some work done - we need to edit down an article for publication (take out 6 of 30 pages!!!), talk about a new one she'd like to co-write with me, and plan for the summer fieldwork - I'm going to hire Beth to do interviews in two other communities. So, all in all, a productive, fun week-end! Hope everyone had fun, too!
Wednesday, July 1, 2009
I had a CT scan today - not sure when I'll get the results. If I don't hear from Dr. K by Friday, I'll give him a call. I see him July 10, though, so he may just wait until I see him.
Tomorrow is my zometa treatment day - will have blood drawn for tumor markers. I may get one of the results later on Thursday, but probably not until Friday.
As for Eddie's lice, there are less and less signs of the little buggers. I only found a handful of nits last night and this morning. I used this gel/shampoo treatment on him tonight and then I had to comb out the gel ... I think I combed out three lice - I think. It's hard to tell. They were little dark specks, anyway.
Scott's poison oak reaction was really bad the last day or two, so he finally went to the doctor today and got a prescription for prednisone. The rash was really weeping but today, they are finally drying up.
Not getting much writing done. Too much administration - reports, financial stuff, travel planning, meeting with students and others who are doing work for me so I need to keep up with what they've done and get them all started on something else. Phone calls to clarify a potential writing project. Gak!
What I need is about two full 8-hours of uninterrupted days to work. That's a luxury I haven't had in a long time. Whew.
Anyway, enjoy the nice summer weather we're having!