Thursday, December 30, 2010

Hard to Feel Sorry for Myself In Situations Like This . . .

One of the Alaska Native villages in Alaska lost power due to what they are calling a "line snap" - their power lines snapped together in high winds and freezing precipitation.

Anyway, an Alaska Native blogger I know, Rainey, posted the following:


They could use some help. I still have a roof over my head with nice comfy temperatures and there's lots of food in my cupboard. These poor folks are low on food and their houses are frozen and they can't live in them, so they're living in the school gym. I don't think they have power yet.

I also know that a King Island man, John Koezuna, is lost and may have been caught in a bad storm between Woolley Lagoon and Nome. Please pray for his safe return.

I have much to be thankful for. I'm going to send out a small donation tomorrow, I think. It feels good to help others, especially when I've been the recipient of help.

Speaking of being a recipient, I have received a few boxes in the mail in the last week or so. First, before Christmas, my friend in Hawaii sent me a hand-dyed scarf from Hawaii with some earrings made with a shell from New Zealand - they're beautiful! And, today, I had TWO boxes from Phyllis, who was the mom of a former boyfriend in the mid-1980s. Phyllis and I stayed in touch over the years - she was like a second mom to me when I was at UP. She sent me a handmade scarf and a hat, with an angel pin that she put there to look over me. I also received a box from the mom of someone I went to high school with - Linda and Billy hosted me and Eddie this past summer on Camano Island, during one of my trips to UW to participate in the clinical trial. She sent me four hats, a shawl, a lap robe, and three hats for Eddie.

So, even though my own news wasn't great today, I still have much to be thankful for. Thank you, Renee, Phyllis, and Linda & Billy for the wonderful and thoughtful gifts! Wow. I have a great variety to choose from now! Thank you! Love you all very much!

Why I Switched to CREDO

I've had Verizon as a cell phone provider for something like six years. But I found out that they have supported candidates and causes that I don't believe in. So, by using their service, I'm operating at cross-purposes with my own efforts. Here's one example:

And, in the 1999/2000 election, they donated about $2 million to the Republican Party. Here's the link:

This Huffington Post site shows that various Verizon franchises (I guess?) donated over $8,000 to Republicans, but some also donated $7,000 to Democrats. So, maybe CREDO left out an important fact in their website - that these major companies donate to both parties.

Huffington Post

On the other hand, I do know that CREDO donates solely to causes I believe in. In fact, earlier today, I had a certain amount of votes that I could use to choose which organizations I wanted CREDO to support. I like having that kind of choice.

So, I made the switch. I can't control who or what Verizon gives their money to. But I do have a voice in the donations that CREDO makes.

I wrote this post because I'm trying to make sure that I support or pay into companies that support causes I believe in. It's like not buying products that actively cause cancer. I want to make sure that my money is used in a way that is in line with my values. I wanted to share that with my readers.

I didn't write it in order to get money - that wasn't my motive. However, there is a perk for me if someone I know switches to CREDO. So, if one of my readers decides to switch to CREDO, I would appreciate it if you mentioned my name. I think you also need to give them my CREDO member number - if you do, I'll get a $50 check. So, yes, I guess in the end, it is a shameless plug. But there's no pressure.

Mainly, my point is to ask you to try to make sure that you support companies that support causes you believe in, whether you're a liberal or a conservative. I think it's good to be aware of things like that.

Darnit!! Not surprised, though

As you all know, I had these new satellite tumors growing in and around the wound. I counted as many as 17 or 18 today. So, I knew my CEA tumor marker would go up. I thought it would by a few points, but instead it went up to 17.1.

Crap. Lost a lot of ground in the last month. My theory again is that Abraxane worked as long as I had a bunch of Herminator-2 cells running around. However, Abraxane is a non-discriminating chemotherapy - it kills bad as well as good cells. So, my lovely Herminator-2 cells have been knocked down by Abraxane - a couple of weeks ago, it was about 1/3 of what it was at the beginning of October. Today, my white blood cell count went back up - it doubled from two weeks ago - but it's still not the strength that's needed.

So, it was necessary to bring in something new - I'm glad we added Herceptin today with the new CEA number. I'm not out of the woods yet. I need to recommit to not eating sugar or processed foods and to practicing qigong and meditation more. I need to do whatever I can to help my body knock out the cancer. I think the high CEA today was a message to tell me to not rest on my laurels . . . or to rely too much on just one thing, like the Abraxane.

It also means starting to say no again to things at work, including any kind of long distance travel. The farthest I want to go is Hawaii or Alaska. I need to stay close to home and rest. I need to keep my life as unstressful as possible. A couple of new things cropped up at work today and it made me feel overwhelmed. So, it's time to retreat.

I expect that I won't sleep well tonight. I might use the time to write and get a bit ahead with work projects. So, I got a plan.

Here's the CEA history:

Anyway, here is the history:

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
8/3/2009 - 4.2 ng/mL
8/31/2009 - 5.1 ng/mL
10/2/2009 - 5.7 ng/mL (or was it 5.8?)
11/2/2009 - 7.6 ng/mL
11/30/2009 - 10.5 ng/mL
12/28/2009 - 13.2 ng/mL
3/8/2010 - 22.9 ng/mL
4/22/2010 - 28.9 ng/mL
6/7/2010 - 46.3 ng/mL
7/19/2010 - 44.3 ng/mL
8/19/2010 - 50.9 ng/mL
10/05/2010 - 41.6 ng/mL
11/04/2010 - 7.1 ng/mL
12/03/2010 - 3.4 ng/mL
12/30/2010 - 17.1 ng/mL

Sigh. No rest for the wicked, huh?

Wednesday, December 29, 2010

What's the Plan, man?

I talked to Dr. K today about what our next course of action is. He tried to get hold of Dr. D at UW all day today, to no avail. I also saw Dr. F, the surgeon, today, as well as the wound care nurse.

The wound care nurse saw the tissue forming in the wound and said that it did look cancerous - it's bumpy and doesn't look healthy at all.

I showed Dr. F the new nodule I felt yesterday - it's growing behind my armpit/shoulder, so it appears as if the cancer is trying to move to my back. He felt it was new since two weeks ago.

Dr. K definitely feels that we should add something to the mix - and with the new nodule, I agree (I think I have a total of 15-16 nodules in and around the wound). I asked if it should be Herceptin and he said that that would make sense.

So, tomorrow, when I go in for treatment, I will have Abraxane, Zometa, and Herceptin. Herceptin makes sense - if Abraxane is knocking out those lovely Herminator-2 cells (which attack the Her-2 positive cancer), then my arsenal doesn't have the tools to fight the Her-2 positive cancer. Herceptin can do that. Maybe that's the ingredient that will knock out the nodules for good.

In other words, it's an A to Z day tomorrow - or maybe now I should call it an "AHZ" Day or a "ZAH" Day or a "HAZ" day. Hey, I like "HAZ", short for "hazard". This combo will be a hazard to the chemo cells. Yeeeaaaahhh, I like that. Okay, HAZ, time to do your stuff! Let's knock our these nodules once and for all!

Monday, December 27, 2010

Doing Fun Things With Family

Yesterday, Eddie and I drove to Seattle. We stopped by the Old Spaghetti Factory in Portland for lunch and then played in their mini-arcade.

Then, we drove the rest of the way to Seattle. We got here about 4:45 and promptly relaxed. I even had pizza delivered. My sis and her family arrived by about 8:46. Eddie was glad to see them as was I. I guess they ran into traffic.

This morning, we went to the Pacific Science Center so Eddie could see Mindbender Mansion. He loved this exhibit, by the way. Kenna (my niece), Eddie, and I did all the puzzles on the clue card and were inducted into the Mindbender Mansion Wall of Fame. Eddie also loved the Spelling Fever. We watched the IMAX film, Legends of Flight in 3D. It was a cool show, even if it was a big cheerleading show by Boeing, who probably sponsored the film. Very cool graphics.

Rena and Henk wanted to watch the Blazer game and I managed to find a sports bar across the street from the Space Needle and near our hotel -gotta live smartphones!- and then after dinner, I took the kiddos to the Space Needle and we went to the top. It was chilly and rainy, but very cool to see the lights. Someone had a huge peace sign on Queen Anne hill. I also lived the big snow globe white lights at the valet entrance to the Space Needle. Very pretty. I even took the kids to the gift shop and we all found souvenirs. And the Blazers won the game. Then the kids even went to the hot tub.

My legs are tired and achey, my lower back is achey, and maybe I should've stayed home and saved the money (even though I budgeted for it). But you know, it was worth it. I enjoyed doing something fun with Eddie -I mean, Eddie and Kenna and I tested our wits at Mibdbender Mansion which I enjoy - and with my family. I guess I just think that I go through so much crap that I deserve to do something fun. And I want to make fun memories with Eddie because, well, you never know.

BTW, Eddie tied the top score at the Spelling Fever. That was worth it right there.

Life is still good, even with satellite tumors. Life is good. And since it was my off week from Abraxane, I had enough energy to enjoy my time here. Yay!

Sunday, December 26, 2010

Post-Christmas Happenings

Christmas was fun - dad did a tremendous job getting all the food and the house ready beforehand. I "slaved" over more silly rhymes as Eddie and his cousins do a little treasure hunt.

My own Christmas was a "warm" one: I received a hat, a fleece jacket, a couple of scarves, and a comforter for the bed, plus some jewelry. Fun stuff!

Eddie's big gift from Santa was a Nintendo DSi XL. He loves it; plus he got some gift certificates, games, a book called "The Day My Butt Went Psycho", plus some puzzles/brain teasers books. In other words, he was spoiled!

We are leaving later today to go to Seattle for a couple of days. My sister and her family are joining us. We'll be staying near the Space Needle because Eddie wants to go to the Pacific Science Center, to see an exhibit called Mindbender's Mansion. Harry Potter is also showing. We'll go there tomorrow.

It's rainy and blustery here today. I will be driving solo, but I plan to take my time. My niece will ride with us as we may leave earlier than my sister (she's sleeping, having just worked the night shift). We'll stop and have lunch in Portland and maybe stop at Great Wolf Lodge so the kiddos can play in the Arcade there.

Yep, it's definitely a kid trip. But maybe Henk will hang out with the kiddos while we go shopping . . . or maybe find a casino? Ha!

Friday, December 24, 2010

Christmas Eve and Day Happenings

Eddie is with his dad for a while today, but he'll be home around mid-afternoon. My family will be here by about 5pm and we'll have snacks set up (one of the favorite ways my family likes to eat) and probably around 6 or 7pm, we'll exchange our gifts.

Eddie gets to stay with me so that Santa can visit our house. He'll stay here until mid-morning and then he'll be with his dad until 6pm. That's when we'll eat dinner. I think we're doing a non-traditional dinner this year. For some reason, turkey and ham just doesn't sound very good.

I have a few things yet to do today - making a necklace, a few more rhymes, and then transferring the photos and contacts to our new phone. (I switched to CREDO Mobile - I found out that both Verizon and AT&T donated money to Tea Party candidates and other politicians that don't support a woman's right to choose or who don't support climate change legislation - plus, in the end, it'll cost about the same, but I will get $100 per phone back in a couple of months. CREDO supports progressive causes.)

I didn't sleep long enough last night - between the caffeine keeping me up too late last night and a cat wanting out of my room early this morning - so I hope at some point to be able to rest.

As I start my day, I want to wish you all a very Merry Christmas and a Happy New Year! Love to you from me and my family!

Thursday, December 23, 2010

Some of the 25 Days of Silly Rhymes

A couple of years ago, I bought a little house for Eddie that has 25 little doors in it, for the 25 Days of Christmas. Usually, for the first few days, I will put pieces of gum or candy, or coins or dollar bills in the little doors.

But then the gifts get a little bigger. I got the bright idea this year to go to the Dollar Tree and I found a few things that I thought he would like. But I can't hide the bigger things in the little doors, so then I make up a silly rhyme that tells Eddie what the thing is and where to find it in the house, so it's a treasure hunt of sorts. It's the first thing he does when he gets up in the morning and the last thing he reminds me to do before bed. Trust me, I need the reminder because I have forgotten to do it once or twice and wake up in the middle of the night to write the rhyme and hide the gift!

Anyway, I share with you some of the silly rhymes:

Already this Christmas, we're on Day #9
And, if you are lucky, we'll all be just fine
I've put the two gifts in the room where we dine
The first is a fun and quite festive candy
The second you scratch if a quarter is handy
Look by the snowmen, quite jolly and dandy!

For Day #10, you get a few jokes
I'm just thankful they don't take egg yolks
You can find them in something you put your cold foots
It's in your room in a pair of snow boots
The boots are next to your toy box
Not in the drawer with all your socks

It's too bad Day 11 was full of bad luck
When you scatch it, I hope we get more than a buck
The more you scratch, the less our troubles
It's a favorite of ours, the one with the bubbles
You'll find it way up on top of a shelf
It's near the houses and lights that are friendly to elves

Jingle Bells, Jingle Bells is a song that everyone sings
Gift #12 is for you, a magical set of rings
Please look inside the refrigerator door
For a very fun gift I found at the store

So, your present today is not a fable
But I dare you to solve it if you're able
Don't look for this gift on the TV cable
And, I wouldn't suggest that you ask Mable
Find the clue to your search is on this label
Look for your gift below the coffee table

It's Day 14 and I want to say Yoi!
Because I'm a weirdo and you're a boy!
Your gift today is a fun combo toy
It's sure to bring you lots of joy
Go into the room with lots of flushes
It's under the sink, not with the plushes!

And now for your hunting pleasure
A way for you to find buried treasure
Hmm, but maybe it's all a big trick
So make sure it's a fun person you pick
The person should have a sense of humor
Because this gift is hidden, according to rumor,
Up in one of the Christmas stockings,
So, hurry up, the clock is tick tockings.

Wow, can you believe it's Day 16?
Your gift can be something hard to clean
I must be weird, you know what I mean?
For giving you slime, not a jelly bean
The slime can be found inside my shoe
I guess I like to spoil my boogaloo

Day 17
Today, here's a way to prepare for up north
A book of puzzles and quizzes for you to go forth
To Mindbender's Mansion at Pacific Science Center
(Let's hope we don't get into a fender bender!)
The book can be found under the tree
Now hurry and find it before you have to go pee.

Day 18
Now there are only 6 more days
I hope you like the way it plays
It's one of those things that has a spinner
It's in the room where we cook dinner
It's hanging out with a clementine
I hope you find it, son of mine

Day 19
Today's gift is a magic deck
To find it, you need to stretch your neck
Pretend that you are a tall giraffe
I promise that none of us will laugh
I hid the deck above a curtain
It's in my room, of this I"m certain

Day 20
For you, a bath is nothing but troubles
But I think you'll like finding these bubbles
This gift you'll find beneath my hats
I had to hide them from our kitty cats!

Day 21
Hooray! For today is Day 21!
Let's hope the day brings all kinds of fun
Don't worry, I didn't get you a hen
For you, it's a black and orange Pen-Guin
It's in honor of Awesome 46792
Tucked inside the sleeping bag blue

Day 22
Now you know rhyming clues is hard
As well as deciding where to place the cards
Some players and the champion fight
Yes, you guessed it, it's Poker Night!
On the bottom of my bedside table
Find the tissue, if you're able

Day 23
The Days of Christmas are nearing their end
LIke your fingers, this present can bend
Amazingly, they also stretch
But if you want them, you'll have to fetch
If you haven't guess by now, they're silly bands
Inside my jacket you should put your hands

Wednesday, December 22, 2010

Taking it Easy - in Theory

Happy Christmas Week!

I have been trying to take it easy. Yesterday, I didn't have any appointments and only ran an errand or two with Eddie. We wanted to go to Wacky Bounce, but they were closed because of a private party.

Eddie helped me make up some silly rhymes for a Christmas treasure hunt for my niece and nephew. I also worked on a couple of necklaces and relaxed in my room.

Today, I see the wound care nurse - I've been using turmeric mixed with aloe vera gel on the wound and I think that it has stopped draining as much as it was. It'll be interesting to see what she says.

I do need to go into the office to fax a couple of things and talk about a grant index for a few minutes. Also, I want to pick up a couple of references . . .

BTW, still dealing with that difficult person. I'm having trouble letting go of the whole situation because that person is being unreasonable. It seems the option is to either not say anything and be professional or stand up to him. However, I think there will be some resolution soon . . .

Then, after lunch, I will pick up my niece and nephew and then I will take them and Eddie to Eugene to play laser tag. I'll bring a book to read.

All in all, a good day planned.

Tuesday, December 21, 2010


A few weeks ago, I went to a local craft fair and found what the creator calls "Neckies". They are made of fleece and button around your neck. She makes her own buttons, too.

I wanted to share the website for them because I bought one and find it to be nice and warm on your neck, an important consideration if you're bald and not wearing a wig. It's comfortable, too!

Anyway, the creator is Gail Krenecki and her website is:


Monday, December 20, 2010

Oncologist Today

I saw my oncologist earlier today and showed him the wound with the satellite lesions. He was a bit disappointed because he had heard that my tumor markers had really gone down dramatically. But he agreed that I had plateaued - or rather that these satellite tumors are apparently resistant to the Abraxane. So, we will change it up again.

I told him my theory about not having t-cells to fight the cancer along with Abraxane. He will talk to Dr. D at UW about this, I think, to make sure I'm telling the story correctly. I wondered if maybe I go off Abraxane and allow my lovely Herminator-2 cells to regenerate. He didn't really think that that was advisable. I don't blame him.

He will also talk to Dr. D in Seattle about using Imiquomod with Abraxane, although it's his understanding that Imiquomod (an ointment) usually works only on superficial lesions whereas my lesions are deeper in the skin tissue.

We also brought up other options. One is to add Herceptin back into the mix with Abraxane. Another is to just do Herceptin. And, the fourth option is to do surgery.

So, a variety of potential courses of action. I'm okay because I know we'll do something. I do have faith that by the time we knock out those satellite lesions, by whatever method, I'll be in some kind of remission. So, just a few more months . . .

Why I'll Never Be an Administrator

I'm feeling tired and icky today - diarrhea to be perfectly frank - which is probably mostly due to the fact that I had an Abraxane treatment three days ago.

The lack of sleep, though, is catching up to me, too. Friday night, after the treatment, I may have only had about 5 hours sleep. On Saturday, it was about 7 - stayed up too late (after 11pm) and then couldn't get back to sleep. Last night, I went to bed at 10:30pm and woke up at 3am (a good stretch for me), went back to sleep and then woke up again at 5:30am and couldn't get back to sleep.

You see, I've been dealing with some professional poliics from afar. I don't think I can divulge too many details because if I do, people might be able to figure out who I'm referring to. Suffice it to say that this person's (a man, if you must know, who is part of that old boys' network) personal opinions about a situation (including root case of the problem and the solution) is coloring whether or not he can give me and my colleague an objective opinion. He seems to be missing the point and he wants my colleague and I to focus on issues that detract from our main point. I personally feel like he's a bully. But no one seems to want to call him on his s*#t. So, he continues to get away with it. Pisses me off.

This is about the third or fourth academic I've known who have tended to make trouble (whether intentionally or not, but mostly intentionally) for their colleagues. But since the trouble or issue usually happens in one-on-one situations, the other non-difficult colleagues assume that it is just a personality difference between them and the difficult person so they don't say anything to anyone. The end result is that the difficult person goes to the next colleague and makes life difficult for them. It wasn't until after the difficult person made life difficult for me that I found out from others how that same difficult person made life hard for others.

But, you see, in the name of professionalism and collegiality, we don't talk about these individuals. The end result that they continue to do things in a way that is unprofessional and often unethical. They get away with this behavior, all because the non-difficult people think that it is just a result of a personality conflict they have with the difficult person.

I, for one, believe in telling it like it is because I don't want to cause anyone else to have to deal with the difficult person's BS. But unfortunately, that's not professional.

In my current situation, I feel like my hands are tied. I can't do anything about it (like forcing this guy out of his position of power), so I did the only thing I could which was to respond, calmly, and tell him that he is missing the point - I responded to his BS by telling him that I am not going to include his issues in my revisions because his issues are irrelevant. It's apparent that no one else will do anything about it. My colleague can't because her own position is tenuous. I can because I am in a secure position.

This is why I can't be an administrator or involved in politics. I don't have the patience for these kinds of games.

Sunday, December 19, 2010

Christmas Happenings

As expected, I didn't sleep well Friday night - that was due to the Abraxane. So, I spent most of Saturday at home. It took me a few hours to wrap presents, in-between watching movies, of course. Mom and dad had wrapped their presents a few days ago, so now our living room is even more festive with presents under the tree!

I also brought a meal over to a colleague and visited with her and her husband.

In the evening, I changed my toenail color and put a nail strengthener on my fingernails, which continue to chip and split. I found a dark green color at Freddies the other day that I'm using on my toes. Dad thinks it looks more like teal, which it does in some lights. It has sparkles. I like it!

I also put a ribbon inside the wool felt hat I bought for myself a couple of weeks ago. The wool made my head itch. Now, I hope that it won't. It's not a professional stitching job, but it will do the trick.

Today, I have to run a few errands, but otherwise, I plan to play with beads and jewelry. Also, make a couple of final preparations for heading to Seattle next week for a couple of days. Eddie wants to go to the Mindbender's Mansion exhibit at the Pacific Science Center. They also, coincidentally, have a Harry Potter exhibit as well. I think we're heading up with my sister's family.

I think I'm having coffee later with a friend.

In other words, a relaxing day. I didn't get as much sleep as I wanted . . . the only thing marring a good restful weekend is an academic bully. But we won't talk about it here. I'm putting that aside until after New Year's.

Treatment Update

Since I wrote my last post, I have had both acupuncture and an Abraxane treatment.

I told my acupuncturist that the satellite tumors aren't going away and I have more of them, plus the whole shoulder joint feels heavy and swollen. So, the acupuncture treatment was designed, in part, to get the energy flowing better. She also gave me an herb that helps with lymph swelling and tumors. I already have greater range of motion in that shoulder and it feels less heavy and less painful. Yay! Plus, I'm doing qigong. The herb also seems to have helped the acne flare-up because it helps remove toxic heat. My face is clearing up!

In addition, I mixed turmeric with aloe vera gel and have been applying that to the wound; I also applied a little bit to the satellite tumors that I see. We'll see what happens with those . . .

As for Abraxane, my total neutrophils count was below the threshold, so I only got half a dose. I hope this means that I'll have a better chance of growing Herminator-2 cells in the next couple of weeks.

So, I'm feeling better. Have a good Sunday!

Friday, December 17, 2010

Christmas Letter - 2010

In order to save time, and also in an effort to save trees, I opted not to enclose a letter in my Christmas cards this year. Instead, I referred people to my blog for the Christmas letter. So, what's been going on in my life this year?

First, my parents and my youngest brother moved in with me for financial reasons. It's been very nice to have them around because now they take care of all the food shopping and cooking and they clean the main parts of the house and Dad does the yard work. Scotty is our tech-guy who manages our electronics. Of course, adding three adults, one yippy dog, and a cat to our household has its moments: we've had to learn how to live as a community again. We are still trying to downsize our stuff - to me, it feels cluttered. I admit to owning a lot of this "stuff", too. A lot of stuff can accumulate over 46 years. We're still learning, but for the most part, it's good. Eddie, I think, enjoys having all these people around.

Second, I found out about and participated in a clinical trial at the University of Washington, with the Tumor Vaccine Group. It was a form of immunotherapy; they gave me a vaccine, which caused my body to create t-cells (Herminator-2 cells), which were then extracted, grown in a lab, and returned to me. I made nine trips to Seattle from April to September. I did get donations for these trips (thanks to those who donated) and also hotel stays and gas from the American Cancer Society, or I couldn't have afforded it. But my cancer progressed - satellite lesions around the main tumor in my left armpit - so I started Abraxane in October. I've had amazing results, with the tumor dying in the armpit and presumably everyone else. My tumor marker (the CEA) went from about 50 in September to 3.4 in early December. I'm bald and I have some fatigue and digestive issues, but for the most part, it's doable. Unfortunately, I think I've plateaued and I have satellite lesions still, which I think is due to the fact that my white blood cell count, which was 6.9 (whatever the measure was) in October is down to 2.4 today. According to Dr. D from UW, the Abraxane works by signaling my body that the cancer is there and giving it a chemical signature so that the cancer looks like a foreign object. My body will then send the t-cells in to the cancer cells to kill it. If I have roughly 1/3 of the white blood cells running around, it makes sense that I've plateaued - not as many soldiers around to kill the cancer. I think I've complicated the process by working hard at work and not resting as much so my body can rejuvenate . . . but the next two weeks, I plan to rest rest rest. I'm more or less caught up at work.

Third, Eddie is doing well in school. For his 10th birthday, we had a "Wipe Out Kids Edition" birthday party which he thoroughly enjoyed. Several of his classmates, the neighbor girls, and his cousins joined us for the obstacle course. He's mostly a delight, although trying to get him to do artwork for school projects is like pulling teeth!

I've found air travel to be a little challenging this year - it just tires me out so when I start out tired, I feel more fatigued. I went to Victoria in January for work, Alaska in July for research, and September to Seattle for the clinical trial. We were fortunate to take little trips to southern Oregon in February, Bend in March, Seattle for the clinical trials, Lincoln City in the summer, Bend again in October for just a night, and a couple more short trips to the coast. My family has joined us on several of these trips. The local trips have been enjoyable!

So, in the end, in terms of the cancer, I'm doing much better than I started the year at. My tumor marker is lower than it has been in 18 months. The house is full of people. I still have lots of support. Eddie is doing well. Let's hope 2011 is even better!

Merry Christmas and Happy New Year to everyone. And, a very big thank you to all who have helped us out with donations in the last year and also a big thank you to everyone who send us blessings, positive energy, and prayers! Happy Holidays!

Thursday, December 16, 2010

Loves Acupuncture!

The last couple of days have been kinda tough. I'm worried about the satellite lesions as well as my finances.

As I said in one of my posts yesterday, both the wound care nurse and the surgeon felt that I've plateaued and/or the cancer in the skin in the wound is growing again and that Abraxane may not be as effective as it had been. That's not the kind of news one wants. But it confirmed what I've been feeling for the last week or so. I also feel as if my body is not able to clear the toxins from the chemo as well as it had been - my kidneys were achey as were my leg muscles. So, my acupuncture treatment today was partly geared toward removing the toxins, partly toward giving me energy and partly toward supporting my immune system to fight the tumors. Afterwards, I feel as if a big weight was lifted off my shoulders and I felt happy. I actually felt quite chipper. I finished a lot of paperwork at work today - the final report at NSF, the IRB close out, a change of grade for a student whose final paper got lost in email, and I updated my CV. Yay!

I also realized, as I lay on the acupuncture table, why I have been feeling conflicted about talking about my finances. A couple of friends have asked if there was any way they could help. I was not sure how to answer.

On the one hand, my medical expenses have been well over $5,000 this year. This month, for instance, I've spent about $400 in acupuncture treatments. I'll get reimbursed, eventually, about $200 from insurance (they pay 70% of the actual treatment, but not the herbs). But there have been about $60 in unreimbursed acupuncture treatments and $140 in herbs. The five-mushroom blend that I take is about $65 - and three of the mushrooms have anti-cancer properties. There are herbs that help me sleep, help with digestion, boost my immunity, and for energy. I also had my out-of-pocket expenses, plus travel to Seattle (and a couple of trips to Portland for my son), plus I've had to get 2 crowns replaced ($800 out of pocket) because cancer treatment affect the level of saliva in my mouth, which means that bacteria can thrive and so I ended up with cavities under the existing crowns. While I had help with some of my expenses to Seattle, which covered about 2/3 of the expenses, I still had about $750 or more in out-of-pocket expenses. That represents about 12% of my total take-home pay this year. (I just realized one reason why I'm not paying down my HELOC as fast as I might like - a lot of my discretionary money is going toward medical bills.)

On the other hand, I have splurged on myself - buying hats and scarves, taking little trips to the Coast or to Central Oregon, buying myself a Mother's Day gift, etc., stuff for the house. So, obviously I can afford to do those kinds of things which some people might consider to be luxuries, I obviously do not need to ask readers for any donations. In other words, if I scrimped and saved and didn't spend money on things like I have, then maybe I wouldn't be as stressed out about my finances like I am. It's my fault so therefore I should just tighten my belt.

So, when people offer to help me financially, I don't feel like I can ethically accept money from them because if I can afford to buy myself a hat or a pair of pants, then I don't need the money after all. That's why I feel conflicted. Plus, in our society, unless things are really bad, it's not right to ask for money. I am much better off than a lot of people.

This is why I love acupuncture. I feel lighter and happier today. In fact, after my treatment, my left shoulder and upper arm (which had been feeling heavy) felt lighter and healthier. I plan to start putting a turmeric/aloe vera gel paste on the wound since turmeric has anticancer properties. I also realized why I felt conflicted about the finances. I'd like to ask for money, but I don't feel like I should ask for money because I have splurged on myself. Just realizing why I am conflicted makes me feel better! I want to thank my acupuncturist for helping me today! Thanks, Brodie!

Man, having cancer is complicated! Isn't it?

Wednesday, December 15, 2010

Christmas Program This Evening

In other news, my son's school (the upper grades) is having a Christmas Program. We'll be leaving the house in about 20 minutes or so. It should be fun. He's the first narrator.

Eddie and I worked on his Social Studies chart this evening - talk about pulling teeth! I'm glad that the worst part of it is completed. He now needs to finish filling in thee parts of the chart. But he can do that at school.

I had lunch with Heather, today, of My Xeloda fame. She also paid for lunch which was very sweet of her. Thank you, Heather! Local Boyz was our choice! Yum! I ran errands to Michaels and Border Books this afternoon. Chatted with a colleague about indigenous cultures and reviving them. So, an enjoyable afternoon.

Tomorrow, I have acupuncture first thing in the morning. Then, I will write my final report to NSF and do the IRB close out.

Then, I'm done until January 3. I think I need a break. Relax. Enjoy the holiday. Have fun and put off any treatment decisions until next week.

I'll finish my Christmas cards this evening. Yay!

Visits Today

I saw both the wound care nurse and the surgeon today. They both agree with me that they feel that the whole area under my armpit is not improving with this cycle of Abraxane.

My wound care nurse tried to remove what looked like it might be slough, or dead tissue, from the deep part of the wound. However, when she tried, it would start bleeding. If it was dead tissue, it wouldn't bleed. It looks unusual, too, so she suspects that it's cancer.

The surgeon looks at the wound and he felt that the whole area - particularly in the back of the arm where most of the satellite lesions are - felt hard again, meaning that there is probably cancer throughout the area.

Not the greatest news one wants to hear. On the other hand, I'm glad that we're all monitoring the situation like we are so we can do something about sooner rather than later.

At the moment, here's my plan: first, talk to Dr. K and ask him to talk to Dr. D at UW about maybe prescribing Imiquomod for the skin mets. I see Dr. K next Monday and will broach the topic with him.

If he'd rather go another route, then it looks like surgery will be the next consideration.

I tend to think that since Abraxane has knocked out those lovely Herminator-2 cells, I no longer have both working together to knock out the cancer. So, it makes me wonder again if I should, perhaps, go off Abraxane for a few weeks and allow my body to regenerate Herminator-2 cells and then go back on it.

Tuesday, December 14, 2010

A Treatment Plateau?

In the last week or so, I began to think that I've reached a treatment plateau. I say this because in the last couple of weeks I have had some new satellite lesions that have cropped up around the wound and they don't seem to be shrinking or disappearing. In fact, a couple seem bigger, but that may be due to inflammation (which can be a good thing - a sign that my immune system is sending Herminator-2 cells there to do battle). I think it is inflammation because my whole shoulder joint is feeling tight and swollen and is becoming more achey. But maybe the satellite lesions are bigger because they are growing - we just don't know for sure. In the end, the dramatic changes and reductions in the tumors that I had in October and into November seem to be slowing down. Darnit!

I think I'm reaching a plateau with Abraxane because I don't have as many white blood cells - the total numbers of white blood cells is about 1/3 (or a bit more) than what they were before I started Abraxane. So there are less Herminator-2 cells running around killing the cancer cells. I had one idea which I brought to my doc's office, which was to let me go off Abraxane for a few weeks and allow the Herminator-2 cells to grow again. But as my oncologist's nurse practitioner staed, we don't know that that would work, so I risk tumor progression whereas we do know Abraxane is working at some level.

Then, to top it off, my side effects, which were relatively minor to begin with (digestive issues, acne) seem to be getting worse. The fatigue is about the same and of course I'm still bald. But the constipation seems to be lasting longer, and over the last week, my kidneys were achey, which tells me that my body is finding harder to flush the toxic chemicals out of my body. The herbs are helping - my acupuncturist put me on a new one last week, but it took me a couple of days to figure out the best way to take it. She said not to take it in capsule form, but to either swallow the powder with warm water or to steep it as a tea over night. By the time I got into a new habit with steeping it overnight, I was constipated. My face has also been breaking out quite consistently in the last week.

So, I'm already thinking of what to do next or one option is to add something to my treatment regimen in addition to the Abraxane. The UW Tumor Vaccine Group has another clinical trial for skin mets, which combines Abraxane with Imiquomod, which is an ointment that has been used with melanoma (I think). I don't want to travel to Seattle, however. I would have to be in Seattle for the first treatment for at least a week. I can't afford that right now.

Dr. D. from UW did say that Dr. K would be able to administer Imiquomod here as it is an FDA approved drug. I see Dr. K next week, so my plan is to have him call Dr. D and see if maybe I could add this to my regimen. That is, of course, if he agrees that the satellite lesions are not disappearing.

I also see the surgeon and the wound care nurse tomorrow. I will say that the overall wound is healing, slowly but surely, it's just the satellite tumors that are worrying me. Maybe the surgeon or the nurse have some ideas . . .

It could be that I'm already becoming tired of Abraxane. I am starting to get tired of being bald and the acne and the digestive issues are annoying This Friday, I will have finished three cycles of Abraxane. I will be halfway done. I think the weekly schlep to get an infusion is getting to me - even though the nurses are great. But I get tired, both literally and figuratively, of not sleeping. I think that as long as I had such an impressive response, the side effects seemed minimal, but as they get a little bit worse and I'm not responding like I was, it's getting old.

I also admit that the work stress has been greater lately - trying to put in an application for release time, a grant proposal, and changes to an article, not to mention teaching the class, grading papers, and now recommendation letters, etc. - it's been a really busy few weeks. Productive, but stressful because of deadlines. I wanted to get another grant proposal out this week, but it's not working out that way. I think it's time to lower my expectations and take a break for a couple of weeks. The point is that the work stress may be contributing to my decreased response with Abraxane.

And, there's financial stress. I keep getting statements from Samaritan Health Services - even though I've met my out-of-pocket maximum, their billing office has consistently forgotten to post an insurance adjustment on my account, so each month, I get bills for $100 or $200 or $300. This means I have to call them, tell them they are missing an adjustment, and verify that I don't owe them money. To top it off, I had my teeth cleaned a few weeks ago; usually insurance pays for this, but it turns out that my dental insurance will only pay a maximum amount each year. I reached that maximum after my crown this summer, so after the fact, I found out that I owed $200 for a teeth cleaning. So, I paid that bill, which meant less for Christmas spending. I also admit to spending more than intended for Christmas . . . so money is tight. I haven't been extravagant. I bought some presents for the Giving Tree tags. I also went to the coast for the night last weekend. I didn't spend much there, but I guess it all adds up. A couple of months ago, I think I figured out that I've spent about $5,000 in medical expenses this year. My $1,000 out of pocket, plus the trips to Seattle (even though I got about $1500 in donations, I probably spent maybe an additional $750 or so), plus over $1,000 in dental, plus acupuncture, wound care dressings, herbs and supplements and mileage. It all adds up.

Okay, enough whining. Time to live in the moment and enjoy the holiday. Let go of stress. I need my immune system to be working at an optimal level. Stress doesn't help!

Friday, December 10, 2010

Busy busy busy Part 2

This week continues to be busy - both at work and holiday happenings. I had two appointments on Wednesday morning and then did a bit of work in the afternoon. I picked up Eddie from school and rested, and then I went to a holiday gathering at the Center for the Humanities and then to the OSU Bookstore sale for faculty and staff. I am done with my holiday shopping; well, except for Eddie's Secret Santa gift at school.

The holiday party at the Center for the Humanities was fun - good food and wine - because I was able to chat with colleagues I didn't know. It's always good to get to know other people.

The books at the bookstore sale were 30% off as was the clothing. I found a couple of Giving Tree gifts and then found a pasta cookbook which was on sale for $5 and with the 30% discount, it was $3.50! I love that kind of sale! Dad says he wants to start cooking more pastas . . .

Yesterday, I had a free morning, so I finished up a course proposal and graded all but the last assignment for my class. All that's left now is grading the last assignment, which I hope to do today and get my grades in.

I had lunch with this man I met through yesterday - we had lunch last Saturday and it went pretty well. It was a fun conversation on Saturday, discussing everything from astronomy to reincarnation to meditation to diet to my work. Yesterday, we talked more about his work and autism. I'm not sure when we might get together again . . . at the very least, our conversations are interesting!

The Dean's office had a holiday party so I visited with a few people there and then some of my female colleagues and I got together for Happy Hour. Really interesting conversation about politics on campus. I stayed out too late - didn't get home until about 7:45pm. So, I'm tired today.

Just got my labs back and my blood counts are all good, so I'll be getting Abraxane today. After grading some papers and making travel plans for Hawaii in February, I plan to pack for an overnight trip to the Coast. It's my friend's birthday. My friend, her dog Shika, Eddie, and I are driving over after school today. We're going to Florence and the plan is to go to Lincoln City tomorrow to take Eddie to the children's arcade at Chinook Winds, but we're supposed to get another visit from the Pineapple Express - i.e., lots of rain that is apparently from Hawaii due to La Nina - so we'll see if the weather cooperates. The coast is supposed to get 3-5 inches of rain in the next day or two. It may cause landslides or washouts on the road. I'll monitor the situation and see what happens . . .

Well, I guess I better do some work. I want to avoid grading papers . . . but the sooner I finish them, the freer I'll feel!

Tuesday, December 7, 2010

Busy busy busy

I've had a busy few days.

I couldn't sleep well on Friday night - thanks to the steroids - so I was tired on Saturday. I relaxed a bit on Sat., then had a date for lunch, then it was home again to rest. Even though I was tired, though, I had some work to do. I had som edits to do for a co-authored article, then I drafted an application for research release time and wrote up a blurb for the King Island website for a newsletter. I even typed up everything.

Got a decent night's sleep on Saturday night. I decided since I had worked all afternoon and evening on Saturday that Sunday was a day of no work. So, mom and I picked out some gifts for two tags I got from Eddie's school's Giving Tree. I also had to return a pair of pants I bought for Eddie that were too big. Then, Eddie's dad dropped him off at Kohl's and then we went home. I spent the rest of the afternoon and evening beading and we also watched movies. Harry Potter movies were on one of the satellite channels and then dad got the Sorceror's Apprentice. That was fun.

On Monday, I edited the release time application and got the necessary signatures and submitted it to the Research Office, then I typed up a letter of support for a colleague, and then edited various pieces of the grant proposal - and then that got submitted! Yay!

I also had a faculty meeting on Monday afternoon. We were trying to figure out what the new chain of command was - and who was responsible for what - but in the end, I don't think much got settled. As far as I'm concerned, it's out of my control. If there is anything I need to do, I just ask before I do it. That way, I'm covered. I figure I'll wait for the dust to settle and not get too stressed out about things. Keep a low profile, in other words.

Didn't sleep as much as I wanted last night and we got up early to go to Shriner's Hospital - Eddie had an appointment. In the end, we're not going to do anything although we may, in the future, do surgery to stabilize his right foot. We finished earlier than expected, then looked around downtown, had lunch at Buffalo Wild Wings (where Eddie played a trivia game), and then spent three hours at OMSI. We all enjoyed our time there! We didn't get home until 5:45pm - so a really long day. Poor Eddie had some homework - he's been at it ever since. He's coming down with a cold.

Tomorrow, acupuncture and wound care. Then, a meeting on the new Native American Cultural Center, then grading papers. In the evening, a holiday get-together at the Center for the Humanities and then the OSU bookstore sale. I still need to finish my beading project.

So, I continue to be busy. I am trying to give myself a chance to rest . . . kinda hard with so much going on at work and for the holidays. But it seems that I have the energy to do all the work . . .

A big thanks to my folks for cooking dinner and grocery shopping and cleaning. I wouldn't be able to do all that work if it weren't for your help!

Friday, December 3, 2010

Da da Da da Daaa da . . . Da da Da da Daaaa da!

What in the heck is that title mean? Think dancing, maybe even line dancing. Oh, yeah! It's the beat to the Conga line! (I think!) Where the last syllable is kinda loud, like it pops.

Why am I dancing?

Well, I just got my CEA tumor marker today. Guess what? It was even lower today than last month. It was 3.4 ng/mL. That's less than half of what it was in November. Anything 3.8 or less is considered normal. So, yes, I guess I can be considered normal! (Well, I'll think of myself as more normal when that wound heals and the satellite nodules disappear.)

I had both zometa and Abraxane. Maybe I should say, it's an "A to Z" Day. I also had good blood counts - my hemoglobin was 10.8. My white blood cells counts are about half what they were before starting Abraxane, but still decent.

Anyway, here is the history:

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
8/3/2009 - 4.2 ng/mL
8/31/2009 - 5.1 ng/mL
10/2/2009 - 5.7 ng/mL (or was it 5.8?)
11/2/2009 - 7.6 ng/mL
11/30/2009 - 10.5 ng/mL
12/28/2009 - 13.2 ng/mL
3/8/2010 - 22.9 ng/mL
4/22/2010 - 28.9 ng/mL
6/7/2010 - 46.3 ng/mL
7/19/2010 - 44.3 ng/mL
8/19/2010 - 50.9 ng/mL
10/05/2010 - 41.6 ng/mL
11/04/2010 - 7.1 ng/mL
12/03/2010 - 3.4 ng/mL

It hasn't been this low since before July 2009 - almost 18 months! Wanna join me for a Conga line? Da da Da da Daaa da . . . Da da Da da Daaa da!

Wednesday, December 1, 2010

Terra Magazine Blog Post about the Place Names Web Launch Party

Hello.  Just a quick note to give some more publicity to the Web Launch party I put together on Monday, Nov 29.  The link to the Terra Magazine blog post is at: