Same treatment plan

Found out today that since the cancer in my cervix is. Feast cancer, so the treatment is the same: gemzar, herceptin, and zometa.

In the meantime, on a fluid restricted diet (2000 ml) and trying to eat more solids.

No other news.

Oh, except a big thank you to Cat for homemade Mac and cheese last night and Shannon for homemade soup. Thank you!

Keeping Busy

It's been a somewhat busy week - but then when are't they?

Eddie had his Science Fair earlier this week. He received a "red ribbon award" for his project, meaning he was in the 2nd highest 25% of his class. He just didn't elaborate very much on his conclusions, which was the main reason he was marked down. But a little birdie told me that one of the judges said that Eddie's project was his favorite. His project was "Game On!" in which he tried to find out which position would give him the fastest time on Mario Kart Double Dash. His results was sitting on an exercise ball, then sitting on a stool, then standing, then lying down.

I've been working on taxes, too, in the evenings. Organizing receipts and creating spreadsheets. Ya wanna know how much I spent on medical expenses? About $7,100. This included deductibles (or out of pocket expenses), what insurance didn't pay for acupuncture, pharmacy, dressings, dental, travel to Seattle, and Chinese herbs and supplements. (Criminy, no wonder I wasn't able to pay down my HELOC very much!)

Last night, I hung out with my volleyball buddies before the game, then I watched the game, and then we hung out some more afterwards. The first evening in a long time when I felt mostly normal and could stay out that late (i.e., 9:30pm). Yay!

It's interesting. As my loyal readers know, I've been feeling very fatigued and also tired of being tired, and maybe discouraged because I could see that the tumors in my left armpit aren't shrinking as fast as I might want them to. I haven't felt really social because of that. However, this week, with the good news on the CT scan, the last Abraxane treatment (and being able to start growing my hair again), the news that I'll be done with the wound in about six weeks, etc., I suddenly feel more social, so I was cheery last night, joking around with my friends, giving them a bad time while they played. Happy to be alive, in other words.

I think between the good news and going to Hawaii . . . I'd have to say that life is good. Thanks to everyone who continues to keep me in their thoughts and prayers!

Unprecedented? Then again, maybe not.

Today, as I received my Abraxane infusion, the nurse and I chatted about my low CEA numbers. It eventually came out that they usually do not see (or maybe have never seen) anyone respond as well to the Abraxane treatment as I have. They haven't seen the CEA drop so quickly in just one month. We talked about how my incredible response is more than likely related to the UW immunotherapy and that the two therapies are working really well together.

Shall I saw it is unprecedented? Maybe not. Maybe in the context of my town, but the UW doctors did say that patients in the same trial as me tended to have results like mine - that after immunotherapy, the standard treatments all of a sudden start working really really well.

And, then again, maybe not. A good friend of mine told me today that he put my name into a reiki prayer pool this past month. I know a lot of people in my community and all over Alaska are praying for me. Other people are sending me prayers, blessings, good energy. My family takes care of the housework so that I have more energy to devote to healing or resting. My medical care team, including my acupuncturist and my therapist and the wound nurse and the infusion nurses, give me great care. My colleagues at work support me. My friends give me good advice. Other cancer bloggers are great role models for how to live life and how to handle side effects and also for their sheer perseverance to live.

I have also made changes. I have limited if not almost completely eliminated dairy and white flour from my diet. I am still trying to eliminate sugar. I don't drink alcohol as often. I try to practice qigong. I wake up each morning and try to decide that it will be a good day, even if that's not how I'm feeling, but by reminding myself of what I am grateful for, it gets easier to make that choice. I try ask myself every morning, "Would I rather spend my day pissy? Or sad? Or silly and happy?" I have repriortized work duties and how I choose to spend my time. I endeavor to be as stress-free as possible and part of that means not taking things personally or acting defensively with difficult people and reacting in a more mature, calm, deliberate way, rather than reacting rashly. I accept help when it's offered and then I try to "pay it forward".

I think that all of these things have culminated in my current, happy state of affairs: dropping tumor markers, shrinking and disappearing tumors. And, the realization that I have a wonderful, beautiful support system. There have been reports by other doctors and practitioners of Chinese medicine of people who were able to turn their cancer prognoses around. There are reports of cancer spontaneously disappearing. I have tried to learn as much about what these patients do and what kind of medical care they seek because the people who came before me have set these precedents. So, no, it's not unprecedented. I have role models to follow. I have great friends who give great advice. But even if it isn't unprecedented, it's still great news!

Thank you everyone! Every little bit helps!

Celebrating Life

Even though I caught a head cold over the weekend, I was still about to celebrate.

First, on Friday, my family and I went to Riverview Mongolian Grill. My whole immediate family (parents, siblings, Eddie) and my sister's family attended. It was great to see everyone - and we started planning Thanksgiving dinner. Eddie had a friend over for a sleepover, so he had fun afterwards, too.

Second, my parents, Scotty (my younger brother), and Eddie and I went to the coast on Saturday. We stopped in Depoe Bay, first, to go somewhere different to eat for lunch (we went to the Chowder Bowl, which was about like Mo's, where the piece of bread they served with the meal was huge!) and also because it was high tide and there were a couple of spots where the waves were crashing up higher than street level. That's always so cool to see! We watched the spouting horns for a bit and then looked in some of the shops. Then, it was on to Lincoln City, where Eddie played at the Children's Arcade (thanks, dad, for taking him) and mom, Scotty, and I played the slots. Then, on our drive back south, we stopped at a used bookstore and then at Wal-Mart for cheap snacks (also looking for cheap pants for Eddie and for Scotty). Then, we got home about 6:30 or so in the evening. So, a long day, but a fun one! Sorry to report, though, that I didn't win at the casino . . .

Sunday was a lazy day, for the most part, but I did go to K-Mart's Friends and FAmily Day for discounts on clothing and other things. Found a Christmas present or two. We also bought plastic to put on the windows in an effort to keep out the cold and keep in the warmth. It was nice, though, just to hang about home. Got boring things done like paying bills.

If it wasn't for the damn head cold, I'd be dancing in the streets! That is, when Eddie wasn't around as he doesn't like to see me dance! LOL

Thankful for Old Friends

On the last trip to Seattle, my brother, my son, and I stayed with an old friend from high school, S., and her family.  It was a nice, relaxing, trip, and I enjoyed visiting with S., again.  S. and I reconnected via Facebook around the holidays this year.  I worked for her dad for almost three years in high school. 

Last year, when I first got on Facebook, one of my early "friends" on that site was another high school friend, C., who also worked at the same place as me (for S.'s dad).  C. will be driving from southern California to north of Seattle, Camano Island (near Whidby Island), to bring her boat to her mom's and her mom's husband's house.  C. will be there almost three weeks.

Last week, I realized that I would be in Seattle when she will be on Camano Island.  So, I asked and she said it was okay if I came up to hang out with her and her family on the boat for a couple of nights.

Then, on Monday, while C. and I chatted on Facebook, I thought that maybe I could go up a day or two earlier and extend my stay.  But then I don't want to leave Eddie for that long.  So, I asked if he could join us.  C. said she'd check with her mom and her husband. 

And, yesterday, they said, "Yes!".  B., the husband, said that he would even offer Eddie a ride on the Harley.  And, B., and C.'s mom would take care of Eddie for a few hours while C. and I drove in to Seattle for my UW appointment.

Wow!  Don't I have great, wonderful friends?  I do.  I am sooo sooo fortunate.

This is especially good because I found out last week that I didn't need just one new crown, but a second one and a new filling.  Originally, it was $1000 more than I had money for this summer . . . then my dentist took out the costs for the "crown build-up", which saved me $500.  But I still have to pay an additional $500 extra out of pocket.  There goes any work I had planned for converting my garage or renting a place at the Oregon Coast for a week.  So, hanging out with a friend at her family's house in the San Juan's - an activity where my only out of pocket will be gas and my and Eddie's food - is all the more welcome!  Thank you, C., B., and L.! 

And, yes, a thank you to my dentist for writing off some of the costs of the crown.

I'll take lopsided boobs over an open wound any day

Every once in awhile, I take a few minutes to read back over my old blog posts. Tonight, I looked over the ones from last November. I'd almost forgotten about the fact that I lived with an open wound for 11 months - and that also included the open cavity that I had after I lost the implant after radiation! Wow. What a difference a year makes.

Also at that time, I was posting some great tumor marker numbers and now I'm living with lung tumors although Femara seems to be working. I also credit qigong and doing what I can to destress my life.

Last year, I was planning for reconstruction surgery. That's behind me now - or rather, it's *in front* of me now! Ha!!

Last year, Obama was elected as our first African-American president. And, I think that he's doing fairly well under the circumstances. I was happy he addressed the Tribal Nations conference in DC yesterday. It's refreshing to have a president who understands the history of federal-Indian relations and the legal basis for Indian sovereignty.

It seems that last year, I was generally happy and there's really no change - maybe I'm happier.

I've had a lot of amazing experiences this past year. I went to Arizona in January; Norway in March and May; DC in June; Alaska in July; Oxford, England, in August; Hawaii in September; and Alaska in October. I've met some amazing people, had a few wonderful mini-vacations, started to work on a few great projects, continued work on old projects, have had great conversations with colleagues and friends, received a lot of great help from my folks and many others, and I'm raising an amazing son.

Thank you, all, for your continued support! Love ya! And, have an amazing week-end.

Oh, before I forget. I think I'm going to take Eddie to Frogtown tomorrow. It sounds like a great musical event geared toward kids and appreciating diversity.

Living in the Moment .. . Feeling Happy and Loved

Had a quiet evening at home. Watching TV. Blogging. Doing Facebook. Got in touch with an old friend of mine from when I was in 5th and 6th grade. We did have fun together - I think her mom gave me a shag haircut back in the day! : ) (Hmm, maybe I try to find that picture! hahahaha)

I am trying to cultivate living in the moment these past couple of weeks. Trying not to worry too much about the future. Making peace with the ghosts of the past. Enjoying what the day is giving me. Choosing to be happy each day. I think it's working.

Received an email from my Hawaiian friend. My colleague who is now in White Mountain. Drank coffee with colleagues/former students. Had lunch with my Ph.D. student. Gave encouragement to another former student who was feeling guilty about being a working mom.

I'm happy. I'm feeling loved by lots of people. Thank you. You know who you are. If love has anything at all to do with beating this cancer . . . cancer doesn't stand a flippin' chance!! Thank you.

Thank you for thoughts and prayers

I got an email last week from my Aunt Nancy saying that she was keeping me in her prayers. Also, when I was in Alaska in July, I found out that Aunt Gemma has my name on the prayer list at St. Joseph's Catholic Church.

I just wanted to thank everyone who is thinking about me and praying for me. I do believe that it helps.

Last spring into summer, I was in the habit of doing some breathing exercises that Andrew Weil talked about in Spontaneous Healing. But I fell out of practice. I'm trying to reincorporate them into my daily life as well as into my pre-sleep routine.

Last night, as I was going to sleep, I imagined breathing in all the good energy and prayers and breathing out the cancer.

I'm reading a book entitled "The Energy Healing Experiments", by Dr. Craig Schwartz (who received money from NIH's division of Complementary and Alternative Medicine to perform certain experiments) and in one experiment, he proved that intention - just the thought of doing something, can be detected. I'll go into it later. My friend, Paula, also had a book entitled "The Sense of Being Stared At", where the author, a biologist, performed rigorous experiments to show that telepathy exists not just among humans but between humans and animals, among other things. The author also talks about intention, for instance, how someone will know or think about someone just before they call on the telephone. This just happened to me last week - I decided to call Brenda up on Wednesday to go somewhere for dinner and when I called, she said, "It's funny. I was just thinking to myself that I hadn't heard from Deanna in awhile" and then you called!

I mention both of these books because I think that intention, visualization, etc., do help. Your thoughts and prayers and intentions for me do help and may be making a difference in terms of my cancer - it's not bad. The numbers are rising, but I'm taking steps to keep them for getting worse.

So, thank you everyone. I really appreciate how often you all think about me and pray for me. Thank you!

Home Safely

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!

Last year at this time ...

I was struggling, feeling sad, angry, and alone. I colored a mandala that I entitled "Slow Burn". I asked my friends for help, and especially to initiate contact with me because I didn't have energy. I had to do daily radiation treatments. I felt tired and was worried about whether or not I would be able to travel.

What a difference a year makes. Since then, I've flown to DC/North Carolina, Anchorage, Bergen, Norway, and Guovdageaidnu, Norway. I've taught a full load. I've written one article (grrr - wanted to do more there), worked on several research projects, submitted a supplemental request, supervised grad research assistants, managed a household, learned how to make the choice to be happy on a daily basis, made new friends, etc. etc. etc.

I guess I'm doing okay. I'm glad I'm where I'm at now than where I was last year. You know, it's partly because of you. Thank you all, for your support!

What a Great Nurse and Other News

You know, sometimes people tell me that they seek cancer services up in Portland and/or Seattle, as if the service here won't be as cutting edge or whatever. But you know what? I have always made a choice to have my cancer treatment here, primarily because I don't want to have to travel any farther than I have to and also because I do think I get great care.

Today is a case in point - the nurse (C.) I talked to yesterday about the CEA results said that she would be at the Infusion center today and if she had a chance, she'd call me with the CA15-3 results. Well, she called me this morning, after I went to a baby shower.

The CA15-3 was 19.7. I've had numbers below 20 (since August 2008) for nearly a year on that tumor marker test. That eases my mind because I think the CA15-3 might be more sensitive as a marker for cancer.

Here's the 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

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

For the CEA, anything below 3.8 is considered normal!

So, I won't freak out too much yet. The nurse, C., thought that maybe I should go see my primary care doctor about what might be causing the slight coughing/wheezing that I have, to try to get to the bottom of whatever respiratory might be going on.

In other news, I ended up with diarrhea today. I doubled my dose of Tykerb today and another blogger I know would complain of diarrhea with Tykerb. I also had seafood last night - a couple of mussels and shrimp - and I don't know if my digestive system was bothered by that. It's wiped me out today, even though I think I had a good night's sleep. I was supposed to also go to my colleague's house for a party, but I think I better stay home and rest. Sorry, L. & J.!!

And, in other news, the garage sale was okay today. I think we had three cars stop by from 12:30 on, so I don't think it was worth it to have it until 4pm. But Scott and I earned over $100 today. Of course, we have a lot more we can sell . . . we'll see how we do tomorrow! Mom and dad were a great help and they even ran to the grocery store for me because of my digestive problems! They're great parents, aren't they?

A very big note of appreciation goes to C. for taking the time to call me with the tumor marker results today. I get great, personalized care!