Monday, October 29, 2007

Party Details

Hi everyone,
So, a couple of people have asked if they can bring anything to the "Boob Ball". Again, it's Nov 3 at 6pm. Please bring your own drinks and a boob joke. Also, I will have a few contests, for: 1) the best word joke; 2) the best visual joke; and 3) the best "boob-looking" food. I will have some snacks and munchies. I also plan to have another activity. My son will be there, so keep that in mind in terms of how risque your jokes are . . . I mean, it's okay to bring them, but maybe be cognizant of who's around you if you choose to tell it out loud! : ) Again, I assume most of you know how to reach me in order to get my address and directions. The theme is humor, so please bring a lot of it!
Thanks, Dee

Sunday, October 28, 2007

Beautiful Sunday in Oregon

We just had a beautiful week-end here in Oregon - sunny and in the 60s both yesterday and today. Today was devoted to yardwork and housework - I wanted to finally paint the ceiling in my living and dining room, but I ended up only getting about halfway done because the #@*#&$ popcorn texture ceiling started falling off! I don't think that the person or persons who put that texture on the ceiling put primer on beforehand, so it just scrapes off really easily. So, I put that whole project on hold for awhile.

At any rate, I wanted to tell everyone that I am indeed having my "Boob Ball" on Saturday, Nov. 3, at 6pm. If you write to me via email or call me, I can give you my address or directions. My son will be there, so it will be okay to bring kids, but we'll have to be careful if there are any risque jokes or images . . . I am planning to do an activity involving boobs and there will also be a contest for the best word joke and the best visual joke. So, please remember to bring a boob joke! I am kinda thinking of compiling it into a book of some sort and have it distributed to the breast cancer support group here in town. By the way, here's a joke that a former student named Erin Haynes gave me:

Q. What do model trains and boobs have in common?
A. Both are intended for children, but it's the fathers who end up playing
with them

You all wanted to know how you can help, and so I wanted to make a request of everyone and it has to do with mind/body interactions and what is called visualization. Let me explain. A colleague of mine, Melissa Cheyney, told me last year sometime that right before she had her wisdom tooth (or teeth?) taken out, someone told her to spend some time "talking" to them. She basically told them that she didn't need it (or them), thanked them for being there, and then asked them to let go of her jaw willingly. Afterward they were removed, I think she told me that the dentist said that she hardly had any bleeding and she hardly had any pain. Remembering her story, I decided to begin meditations in which I talk to my breasts and tell them thanks for what they've done for me, but now it'd be better if they were taken away. I've asked them to go willingly and also asked my body to let go of them with little to no pain. I've tried to visualize the surgery in order to prepare both my mind and body for what will happen. I'm also anxious and apprehensive about this surgery as I'm not sure how much pain I will have and also I'm not looking forward to the nausea from the anesthesia after surgery. So, my request of you is to help me with this meditation - whether you pray or send positive thoughts or send good energy, whatever it is you do. And, what I'm telling myself (and what I'm asking you to do) is: 1) ask my body not to get nauseous after surgery; 2) ask my breasts to leave my body willingly and with little pain; 3) to talk to my pectoral (sp?) muscles so that they are not tight and allow the temporary implants to be inserted under them easily; and finally 4) to help me not to be too anxious beforehand. I was very anxious before surgery last time - and I didn't know what to expect - and I think that that may have affected me post-surgery. I've been doing some ready and it just seems that the more positive you are before surgery or chemo or whatever, the better your body reacts .. .

I appreciate it, everyone! And, remember those jokes!

Thursday, October 25, 2007

surgery date

Hi again,
I received several calls yesterday from both the plastic surgeon's and the regular surgeon's office. The surgery date is November 16. I guess I go in at 6:30am, they inject the radioactive stuff in my breast around 8 or 8:30am, surgery is at 10:30am. I think Dr. Faddis (the regular surgeon) estimated surgery to be about 4 hours. They say I'll be in the hospital two nights, which means I go home on November 18. I have my pre-op appointment with Dr. Faddis on the 12th, where he'll go over the whole process with me. Last time, I didn't ask for this pre-op appointment with Dr. Hudson and when I went into the hospital, I was not only anxious because of the impending surgery, but also because I didn't know what to expect or the sequence of events.

The radioactive stuff is to try to map my lymphatic system so that Dr. Faddis can try to get a new sentinel lymph node, if there is one. This will help determine whether or not I go on Herceptin. It's interesting - I've talked to a couple of colleagues here and they say that they've known folks who went out of the state of Alaska for breast cancer treatment - one woman went to Maine (or was it Massachusetts) where her family was and another woman went to St. Louis. They were a bit surprised when I said I could have surgery in my home town, which then brings up the questions about whether or not the surgeons I'm working with are "good enough". I feel pretty comfortable with the two surgeons (Dr. Faddis the surgeon and Dr. Havard the plastic surgeon) and one of my friends, who is a surgical nurse, said that both are good. I'm fortunate, in other words, that I can stay home to have surgery, and not have to go elsewhere. On the other hand, if there is a breast surgeon specialist in town, that means that there must be a demand for it, which might mean that there's something going on in town or the Willamette Valley that causes breast cancer. My colleague Sunil Khanna says that there is a higher incidence of breast cancer in the Willamette Valley than elsewhere in the state and that they are looking into possible reasons why.

Well, we head home today from Fairbanks. It was a good trip, overall. I spent most of yesterday afternoon catching up with folks I know at the Carlson Center (where AFN is held) and then met with colleagues and was fortunate to spend time with my cousins. My cousin Cindy's son, Ethan, watched Eddie for awhile so I could meet with Tom Thornton and Rosita Worl and company. It was fun and apparently Eddie had fun with Ethan. Anyway, I better go . . . we're meeting Teddy and Larry and Matt for breakfast.

Wednesday, October 24, 2007

King Island placenames

Yesterday, I was feeling guilty for not working and part of the reason is that one of our elders, Teddy Mayac, has been working almost non-stop since he arrived here. But, yesterday afternoon, we finally sat down with Larry Kaplan to do some work. First, Larry and Teddy went over bird names (and I visited with colleagues Gordon Pullar and Dixie Dayo at the Dept of Alaska Native and Rural Development for a few minutes). Then, Iviana wanted some tea, so we went to Wood Center and worked for another hour and a half. It's interesting - Teddy had a list that we worked on last December, plus information from lists made by Frank and Ursula Ellanna back in the 1980s, plus a list he worked on with Marie. Larry had all of those lists, plus a recent one from early September. That one had been revised and fortunately, my student Kai Henifin had printed out a newer version from late September. At any rate, we first had to figure out whose list we'd work on and how we could then make sure we were all on the same page (pun intended). I think we finally figured it out. So, we worked with Teddy, Larry, my mom, and Agnes from about 3:30-6:30pm and then we had dinner and about 7:30pm, Teddy and I went over the list yet again as some translations for names got into the Descriptions column and I want to be sure all the translations are there. We worked until 9pm. Teddy and I still have a few more pages to go over. In the meantime, Larry is working on spellings. Hopefully, I will have the most up-to-date list by the time I leave.

Are you confused? We are! It is important work for our placenames map, though. We need to make sure we're all operating with the latest and best list.

No news yet on the surgery date . . .

Tuesday, October 23, 2007

Some thoughts while on a business trip

Hi everyone,
So, as you know from my previous post, I am now in Fairbanks trying to work on a couple of projects. There's the King Island placenames project and also this new project that I'm working on related to Alaska Native corporations created under ANCSA. When I first got the diagnosis, I was thankful that I did have a few things that I needed to work on in order to keep busy, but I've found in the last week that I don't feel like working at all. And if truth be told, by the time we left on Friday, I just really wanted to stay at home and read books and watch movies. Now I feel guilty because I am up here and I gathered a few folks here to do some work on the placenames project, but I find myself trying to avoid the work. Ah, sigh! I guess I'm just wondering what other people might do in a similar situation: while waiting for surgery for cancer, would you want to keep busy with work? Or would you just want to hang out and visit with friends and family? I guess it's different for different people. Maybe what I need a kick in the pants in order to get motivated for work! The good news, I guess, is that I only have a few things yet to do and then I can just relax.

At any rate, no news yet on a surgery date . . . will keep you posted!

Saturday, October 20, 2007

Snowy Saturday in Fairbanks, Alaska

Hello again,
I am writing from snowy Fairbanks, Alaska! We arrived here yesterday evening - it was snowing when we arrived at the airport and when I got our rental vehicle, there was about 6 inches of snow on it! Fortunately, it's a dry snow, so it's easy to clean off the cars. We (my mom, my son and I) are here to go to some events associated with the Alaska Federation of Natives conference which starts on Monday. We will also be meeting with the linguist (Larry Kaplan) and with the archaeologist/mapper who have been working on the King Island placenames project. A couple of elders from our community, namely Teddy Mayac and his wife, will help us, too, as we try to finalize the spellings of placenames and also of birds. Also, on Wednesday, I will meet with colleagues Tom Thornton from PSU and Rosita Worl from Sealaska in order to begin a new project assessing how the Alaska Native Claims Settlement Act has affected biocultural health and also the environment, etc. It should be interesting. We already had native food last night . . . well, the elders did. They ate maktak (whale blubber), dried meet, and alluq (Eskimo ice cream) and I also ate some smoked salmon that Teddy and Agnes caught. It was good!

It occurred to me while traveling up here that I should have titled the last entry "The Waiting is the Hardest Part" (a song by Tom Petty and the Heartbreakers). I thought that it might be kinda cool and fun if I could find song titles that would be appropriate for these posts . . . now I need to work on one for today's . . . hmmm.

Dr. Kenyon called me while we were on a layover in Seattle. He said that my PET scan was okay but that my tumor is Her-2/neu positive. However, this does not necessarily mean that I go on Herceptin - it depends on how big or how much cancer is in the breast tissue - and they won't know that until after the mastectomy. It will also depend on whether or not cancer is in my lymph nodes, so Dr. Faddis will try to get one for testing when I'm in surgery for the mastectomy. So, let's cross our fingers and hope that it's both small enough and not in my lymph nodes! I think doing chemo would be hard, although apparently Herceptin does not cause your hair to fall out nor does it cause nausea. It just might affect my heart muscle! So, back to the waiting game - we won't know more about whether or not I take Herceptin until after surgery. Surgery has not been scheduled yet, but hopefully, I know next week.

Well, I'm doing okay . . . we're staying with my cousin, Clara, while in Fairbanks. My son, Eddie, is ready to use the computer and he is "patiently" (ahem) waiting! Take care!

Thursday, October 18, 2007

Ahh, the waiting . . .

Hi everyone,
I thought that I would wait until I heard about the results of my PET scan and Her-2/neu analysis before creating a new post. I was told that Dr. Kenyon would probably get the results of my PET scan on Monday or by the latest on Tuesday, but I haven't heard yet. Then I figure that he's wanted to wait to get the Her-2 results before calling me. Anyway, waiting to hear about results does cause some anxiety, even though I try to be patient. This is probably one of the worst parts of living with cancer: the anxiety of not knowing and waiting to hear results. Today, I told my friend and colleague, Janet Lee, that NOT hearing the results yet might mean that it was good news - if it was bad (i.e., the PET scan showed something abnormal), Kenyon would've called me right away. That's what I hope, although I try not to make that assumption. If the Her-2/neu is positive (i.e., "overly expressed"), this might mean that I go on Herceptin for a year. I'll let you all know what happens . . .

I met with Dr. Faddis, the surgeon, yesterday, and with Dr. Havard, the plastic surgeon a few days ago. Their offices will coordinate to schedule the surgery, which I asked to be after November 9. At this point, it's a bilateral mastectomy with insertion of temporary implants, otherwise known as tissue expanders. After healing from the surgery, I will spend about two months getting "pumped up", that is, Havard will inject either 20 or 50 cc's of saline into the expanders in order to gradually stretch the chest wall muscles and the skin.

Dr. Havard and a couple of women that I talked to who went with reconstruction using implants used the term "pump it up". So, I decided to go into iTunes to find songs entitled "Pump it Up". There were almost 100 songs! There were several versions that were remakes by the same artists, which still makes a lot of songs with that title. Actually, though, the song I was thinking of is "Pump up the Jam" by Technotronic. If I can figure out a way to post that tune on this blog, I plan to do it, so that you all can think of me as I undergo "tissue expansion"!!! So, don't be surprised if you see me changing size over the holidays!

Wednesday, October 17, 2007

A joke

Hi again,
So, shortly after I found out about the second cancer, a young woman (Beth Marino) with whom I'm coauthoring a paper on King Island sent the following joke that I thought I'd pass on:

What did one saggy boob say to the other saggy boob?
If we don't get support soon, people will think we're nuts!

Believe me, I won't get offended at most jokes. So send them or post them!
Thanks everyone,

Monday, October 15, 2007

A New Blog

Hi everyone!
So, blogging is new to me, but since I will need a quick and easy way to keep everyone "abreast" (thank you David McMurray!) of what's going on with me as I undergo my second round of treatments for breast cancer, I decided to create one at the suggestion of one of my friends, Andrew Valls.

Okay, for those of you who don't know, I was diagnosed on October 3, 2007, with a second and different cancer in the right breast. Five years ago, from August 2002 to March 2003, I underwent treatments for a 2.0 cm infiltrating lobular carcinoma. The treatments included a lumpectomy with sentinel node dissection, four treatments of adriamycin and cytoxan, and 6 1/2 weeks of radiation. Since the tumor was estrogen-positive, I started taking tamoxifen in April 2003 and just finished taking it on October 10.

This time around, I have a very small (2-3mm) infiltrating ductal carcinoma. I have decided to go with bilateral mastectomy (which decreases my overal risk of recurrence from 20% to 1-2%) followed by reconstruction. So far, I know that it is estrogen positive as well and since I'm premenopausal and tamoxifen (which tends to work with premenopausal women) did not work, I may have to either surgically or chemically induce menopause by taking out my ovaries or stopping them from working with monthly injections. But that's a decision to make later.

For reconstruction, I will go with implants, although I won't need to decide on saline or silione just yet. Even if I wanted to do a TRAM flap (i.e., use my own tummy tissue and muscle), I only have enough tummy tissue for one breast! So, I'd need an implant anyway. Implants have a shorter surgery time and a shorter recovery time. And, apparently, they will be able to use the nipple from the non-cancerous breast to help reconstruct the nipple on the right side. Ah, the things you don't know.

Two women at the support group last night were kind and generous enough to show me what mastectomy and reconstruction look like -thank you ladies! It's helping to demystify the whole process and what to expect.

We're waiting to see whether or not I need to do chemo. So far, the chest x-ray is normal and I am now waiting for the results of the PET scan.

Overall, I'm doing okay and am planning to have a "Boob Ball" on November 3, in order to say good-bye to the troublesome cancer appendages and also to celebrate life and laughter. My only requirement for guests is that they need to bring a boob joke, which I will put into a notebook that I can enjoy after surgery. Of course, there are times when I feel sad or lonely or tired or stressed out, but my friends and family and colleagues have been great - I just need to make a phone call and I feel a lot better! Scott (my boyfriend) and my family, especially, have been great. When Scott is able, he's here with me and has attended a couple of consultations with doctors. He's also helping me as I work through feelings and consider treatment options. Humor helps tremendously!

So, anyway, save the date! For those of you in town, the "Boob Ball" is November 3, probably around 6 or 7pm. And, remember your boob jokes!! : )
Dee (or Deanna or Dede)