I just realized that I haven't updated my blog in a few days. Sorry! I guess I've either been busy or too tired.
On Friday, I took my son and niece and nephew to see WALL E. It was a cute movie with a good message. Then, we went to dinner and I brought my niece and nephew home and then was too tired.
On Saturday, I took my son and Scott and his daughter out to lunch for Scott's birthday and then took a ride on a Willamette Jetboat from OMSI to Willamette Falls. It was about 100 out and being on an open boat on the river was just what the doctor ordered. We wore lots of sunscreen and then had fun when the jetboat operator purposefully splashed us. We saw a bald eagle's nest and an osprey nest, expensive houseboats and big mansions (near Lake Oswego), then went down and saw the old Willamette Locks and Willamette Falls. All in all a great two hours on the river!
Sunday, it was much too hot to much of anything. I played softball Sunday afternoon. My brother-in-law finished doing his part on Eddie's Big Wheel. Now my task is to paint it and put the numbers on it, too.
Today, I had radiation treatment #18 - only 10 more to go!! Yay! Still dealing with the open wound (spent about $50 in one week for dressings and banndages!). The wound care nurse gave me a durable medical equipment catalog and I was able to order everything I needed directly from them and they will bill my insurance. Can you imagine? Otherwise, I might have a $200 bill for bandages and dressings that I just throw away. Criminy.
Other than that, I'm doing well - having fun - I think I finally shook that bad mood. My son's enjoying his summer break. I've more or less gave up on work for the month of June. I do have a couple of things that I want to get to this week, but I think I may take most of July off as well. I need to write a couple of articles and do some background research for a new project and write a couple of reviews.
Hope you all are doing well out there!
Monday, June 30, 2008
I just realized that I haven't updated my blog in a few days. Sorry! I guess I've either been busy or too tired.
Thursday, June 26, 2008
Today, I had radiation treatment #16 - only 12 more to go! Yippee!! But my doctor is pretty sure she wants to do booster treatments, depending on how well my skin and the wound are holding up. But I will worry about those in a couple of weeks.
But as I waited for my dressing room to open up, I chatted with a couple of ladies in the waiting room. One is having a fun relaxing time coloring mandalas and we chatted about the one she was working on. The other woman was diagnosed with liver cancer last August and it has spread to her brain - she said she had lots of little tumors there. She only found out two weeks ago and is having whole brain radiation. I told her that I was sorry to hear that news and also that I know she must still be adjusting to the news. I tried joking around some, too. As she left, she said, "Why are you always smiling so much?" or "How come you smile so much?" I looked at her with a smile and the only thing I could think of to say was, "I work at it." It's part of my theory (based upon reading bunches of books) that cancer can't survive in a happy body.
Tuesday, June 24, 2008
Today, I heard from a couple of friends (Stan and Heather) via email and both messages were very much appreciated, so I just wanted to say thank you! They offered all kinds of support! My friend Tammy sent me a couple of jokes and then I invited myself up to Tammy's and Rick's for dinner. I really am fortunate to have that kind of support. Scott also listened to all sorts of things I had to say - thank you to him, too!
Well, I also had some jewelry resized and put into new settings a few weeks ago and I had a chance to pick them up today. I've been friends with Carol for as long as I've been friends with Tammy and Rick and then Carol ended up marrying Connan a few years ago (wow - almost 6!!) and for awhile, Carol and Connan and then Connan's brother, Sean, and his wife, Elisa, played on our softball team. Sean and Elisa own Olufson's Designs (a jewelry store) downtown and they are the ones I asked to work on my jewelry. I really love the work that was done! The jewelry turned out nicely, so that's another thing to be thankful for!
And, it's sunny. So, thank you everyone for being there!
Also, today at counseling, I told her about how I often forget to take my evening Xeloda dose. I remember a few months ago that a couple of other bloggers would mention how they took reduced doses or would forget. I didn't understand it because I've always been a good patient and done what I had to do - took those pills, etc.
But you know, now I understand why this happens. I told my counselor that not taking my night-time Xeloda is like having a mini-revolt. I get tired of always being a good patient. I figure I'm doing about 10 others things that more than make up for the missed doses. I'm entitled to be rebellious once in awhile, right?
My friend Tammy just forwarded this joke to me - I thought it was great!
A woman in her fifties is at home, unclothed, happily jumping on her bed and squealing with delight. Her husband watches her for a while and asks, "Do you have any idea how ridiculous you look? What's the matter with you?"
The woman continues to bounce on the bed and says, "I don't care what you think. I just came from having a mammogram, and the doctor says that not only am I healthy, but I have the breasts of an 18 year-old.
The husband replies, "What did he say about your 55-year old ass?"
"Your name never came up," she replied
Monday, June 23, 2008
I arrived home last night - mom and dad picked me up at the Portland airport - the plane was about a half hour late. But we landed into some beautiful sunshine and blue skies. I was really tired last night and after doing the bare minimum, I was able to get to bed and get a good night's sleep.
I had radiation treatment # 13 today and went into my office for just a few minutes. I've sent the afternoon putzing around the house - watering the lawns, the flower meadow that we seeded 10 days ago. Eddie decided to take a mud bath - then I had to give him a real bath because he was sooo dirty! He had fun, so I figure it was all worth it! Dad worked in the yard - started trimming this hedge to the right of my garage and then swept up all the needles on the driveway from said hedge. He also helped me get my air conditioner installed in the living room window - it was located next to my pretty yellow rose bush and I believe that bush nicked both of us. So, it was a good productive day. Volleyball tonight . . . have a good evening!
Saturday, June 21, 2008
I arrived in Raleigh yesterday evening and Carver met me at the airport and we went to her house. We hung out for awhile and chatted and she fixed dinner - it really hit the spot! - then we chatted some more and went to bed. It's pretty comfortable here with lots of stuff to look at it. She wants me to feel right at home, so that's what I'm doing'!
We went for a brief walk last night - after sitting for two days in meetings, I felt the need to stretch my legs. Then, after I got up this morning, we walked on the part of Raleigh's Green Way that is near Carver's house. We both got overheated as it's about 82 with 54% humidity, but now I'm relaxing at her house.
It's been fun to see things that I've only seen in pictures from her blog - including her secret garden and the trails around her house. After lunch, I think we may be going to the local Farmer's Market. If I wanted, we could do more sightseeing and that would be fine. The point of the trip, though, is to just hang out and get to know Carver some more since we've been corresponding electronically for several months. I also like not being scheduled or having an agenda. It's nice to just hang loose and relax. Also, since I've been on three planes in the past four days . . . and will go on two more tomorrow, the less time spent traveling, the better.
So, yep, I'm having a great time and enjoying my stay! I think I may color another mandala!
Wednesday, June 18, 2008
I arrived safely in Washington DC this afternoon. And, fortunately, it was nice out - in the mid 70s! I really lucked out weather-wise since I am worried about how well I will do in the summer's heat this year. I wasn't sure how well I would do traveling - I was nervous about getting nauseous from the chemo med Xeloda. So, I didn't take my morning dose this morning and then made sure I kept a small bit of food in my belly for most of the trip and I drank lots of water. It seemed to help. There was a bit of turbulence as we descended into DC and I started getting a bit motion sick, but I hit those acupressure points near the wrist that help with nausea and it worked! So, I'm relieved as I have a big trip to Greenland in August and wasn't sure how well I was going to travel.
Once I got into the taxi, my former sister-in-law (Darlene) called and she offered to pick me up at my hotel and then we went to dinner with my former mother-in-law, Pat. There was a brief thunderstorm, hence the term thunder boomers - they get some really powerful thunderstorms here and I'd kinda forgotten about them. The first rumbles I heard sorta sent chills down my spine. When we picked up Pat, there was an absolute downpour! We haven't seen it rain like that out west in a long time. But then it was over. Just like that. And, the sun came out.
It was fun - we went to this really good bread/soup/sandwich/salad place on Duke Street called Panera's. I gave them pictures of Eddie and showed them some of the stories he wrote in school this year. Pat was tickled to see the stories. We're all proud of him and it shows! We also ran in to the hair salon next door - the woman who owns the place is partners with an old friend of my ex-husband. She saw Eddie's picture and said, "he has a lot of you in him". That was kinda nice to hear. After dinner, we went to Pat's house and visited for an hour or so with my former father-in-law (Bob) and former brother-in-law (Rich, Darlene's husband). We reminisced about Eddie's baby/toddler days, so it was a good visit - got caught up on all the news.
I must say - I feel very fortunate that I'm still able to enjoy a cordial relationship with my former in-laws. My family, for their part, get along fine with Tim, too. I just think that maintaining friendly relationships like this is better for all concerned - and especially my son. So, thank you very much, Bates family. I appreciate it. I also appreciate you all reading my blog, too.
Tuesday, June 17, 2008
Tomorrow morning, I head east, to Arlington, VA (just outside of Washington, DC), to attend a two-day meeting at the National Science Foundation. I hope to see other folks while I'm there - some friends and colleagues. It should be fun. I leave Friday afternoon to go to Raleigh, North Carolina, to visit Carver (at Carver's Sight or is that Site?) for a couple of days. She will be the second cancer blogger that I will have met. Yay! I think it's cooled down back east - highs are in the upper 80's, not almost 100. Whew! That's a relief.
You may not see any posts for a couple of days . . . I'm feeling strong enough to travel and do this, so I think I'll be fine!
Last week, when I had my monthly Zoladex injection to shut down my ovary production, I asked the nurse to draw blood for lab tests, specifically tumor markers. I got the results today . . .
and my CA15-3 was only 23!! In the normal range (0-31 U/mL)!! This was what it was in September, before I was diagnosed. Here is what the levels were over the past 9 months:
9/2007 - 23 U/mL
1/2008 - 31 U/mL
3/2008 - 36 U/mL
6/2008 - 23 U/mL
It's going down again!
As I noted before (see my earlier post), they're not exactly sure what this measures. Here is the disclaimer on the lab report: " . . . Serial testing for patient CA 15-3 values should be used in conjunction with other clinical methods for monitoring breast cancer. Elevations may be found in patients with non-malignant disease. CA 15-3 values should not be interpreted as absolute evidence for the presence or absence of ??" (page was cut off).
Even with that disclaimer, I'm celebrating. It's going down. Radiation and chemo are working!
The normal range for the CEA tumor marker test is <3.8 ng/mL. My CEA test was as follows:
1/2008 - 1.2 ng/mL
3/2008 - 0.9 ng/mL
6/2008 - 1.0 ng/mL
So, it's still in the normal range. Good news!
Finally. I needed to know that everything I'm doing is accomplishing something!
Monday, June 16, 2008
My research team (community members and scientists) are trying to tie up this large project funded by the National Science Foundation. It has a long formal name, but I've just ended up calling it the King Island Placenames project. If you want to know more about the project, go to this link:
King Island Placenames project
Alex Nyers, one of our grad students, has just launched a photo gallery of the project. We had over 8,000 digital photographs taken through the course of the project. There were at least 10 photographers, including community members and scientists. The gallery is organized by year of the project and then, either by photographer and/or subject. There's a lot of cool photos of the project, so if you're interested, the site is:
The King Island Photo Gallery
You can search for photo name and also for those photos that we have identified as being associated with certain placenames. We haven't finished that identification process, though, so not all placenames have photos. If you do see a photo and want to tell me what place that is, please let me know! We may eventually have a comment place on the gallery or the interactive web map, so for now, just contact me and let me know.
I know that a lot of community members read my blog ... so please, enjoy the photographs. They belong to KINC.
A huge huge thank you to Alex for creating the gallery template and then manipulating the digital files to make this gallery accessible to everyone. Other thank yous go to project personnel and community members who have worked on this project: Kai Henifin, Cathleen Osborne-Gowey, Jeremiah Osborne-Gowey, Kim Nelson, Matt Ganley, Mary Dillard, Jesse Ford, TT Tahbone, Jon Butzke, Scott Kingston, Olga Kingston, Teddy Mayac Sr., Charlene Saclamana, Greg Saclamana, Marie Saclamana, Jessica and Kevin Saclamana, Francis Alvanna, Earl Mayac, Leona Mayac, Frances Muktoyuk, Gabriel Muktoyuk, Johanna Kane, Lillian Tiulana, Susie Toliver, Helen Pushruk, Larry Kaplan, Owen Mason, Claire Alix, Jeffrey Saclamana, Caroline Muktoyuk Brown, Toni Smith, Theresa Muktoyuk, Pat Sagoonick, Lucy Koyuk, Bertha Herzner, Becky Amarok, Gemma Carlisle, Barbie Golorgergen, Alyssa and Rhiannon Golorgergen. Kathleen Paniataaq, Kuni Ellanna, Agatha Ford, Agatha Kukuluk, and Sylvester Ayek.
Oh, and I guess I need to (reluctantly) thank Jimmy Carlisle. He's a royal pain in the butt. But he helped, too. (Jimmy? Are you offended? LOL)
I know I've forgotten someone. Please let me know if I have.
Huh? What do big toenails and emotions have in common?
Well. Softball, of course!!
We had another game last night (they're every Sunday night) and I played more aggressively last night than I have since the season started. For the first game, I was tentative because my throwing arm was tight and I wasn't sure how well I would throw. Well, it's loosened up and it feels fine to throw. But I ended up injuring my left big toenail - it turned black because it jammed in the front of the shoe when I had to stop all of a sudden. So, I have been playing tentatively and my mood (feeling lonely and sad) these past several weeks contributed to an overall less-then-stellar effort on the ballfield for my part. I didn't want to reinjure my toe and it was just hard to be there.
Yesterday evening, though, I felt better, happy to be there even though I'd sat three hours in the sun for graduation, and more confident about my abilities. But we only had 7 players to start the game. They had 10. And, whaddya know? We actually were either tied with them or were within 2 or 3 runs until the 5th inning. That was when they got ahead by 5 and we couldn't quite catch up. Overall, I was 4-for-6 batting and I threw out a runner at 2nd. We lost 17-12, I think. But since I felt better emotionally, I played more aggressively. Guess I'm an emotional player.
Unfortunately, though, during the game, I jammed my RIGHT toenail into the front of my shoe. When I took off my socks, there was blood.
So, last night, I soaked my feet in Epsom Salts (one website said that this is something one can do for black toenails). When I dried off my left foot, I accidentally snagged the end of the left toenail . . . and the whole thing pulled straight up, with only the back edge attached to the cuticle! Gave me the heebie-jeebies to see my toenail like that, but it didn't hurt at all. Just the thought, you know?
My right toe was weeping through the night and this morning, so I decided that I should go to Immediate Care and see what I should do about these toenails. First, she said she'd take off the left one and since it didn't seem to bother me much when she manipulated it, she just yanked it off. I didn't watch. Ew. But it hurt less than it hurts when you pull a hair out of your head.
She said the right toe is still pretty tightly attached on one side and not attached on the other and as long as it isn't infected, I should just watch it and see what it wants to do.
She said that it would take a year for the left toenail to grow back. And, to use moleskin and/or bandaids to protect those toes when wearing shoes.
I am definitely buying new softball shoes. Obviously, the new ones I bought are not good for me. Bummer deal.
You know how sometimes softball players have nicknames? Just call me "8 1/2 Toenails" or something like that.
Oh yeah. The doctor told me that I could go ahead and play sand volleyball. Cool.
Sunday, June 15, 2008
I was honored today to hood two recent Ph.D. graduates at OSU's commencement ceremony. One was my first Ph.D. graduate student, Suzanne Fluharty, who finished her dissertation last September. She asked me a few weeks ago and I of course was thrilled to perform this ceremony with her. Then, yesterday, out of the blue, Kate Sloan asked if I would hood her - I was not the chair of her Ph.D. committee but because of some miscommunication, her real chair, Court Smith, not able to do this. I told her I would be more than happy to do this for her! I was the chair of Kate's master's degree committee and served on her Ph.D. committee as well.
Both women finished their Ph.D.'s in Environmental Science. Suzanne completed an environmental history of a plot of land that has been returned to the stewardship of the Coquille Indian Tribe. Kate's dissertation was about tribal historic preservation offices. Both were well done and done in consultation with tribes on the west coast.
I was very proud of both of them and we were all excited to be there! It was hot, though, sitting in the middle of the football field at Reser Stadium even though the ambient temperature was 75 elsewhere. Luckily, there was a nice breeze to cool things off and as we listened to the various remarks, I opened up the robe to allow the breeze to cool me off and I would take off my cap to allow some heat to dissipate. They left bottles of water for everyone there - and I brought one with me, so I drank two bottles of water.
Two other things really stood out about this commencement ceremony. First, the commencement speaker was Helen Diggs, who also received an honorary doctorate. She's now the director of a veterinary program at UC Berkeley. She'd completed her DVM (veterinary medicine) at OSU in 1985. But she'd also finished her undergraduate at the University of Portland, which is where I finished my undergrad. I actually knew Helen while I was getting my degree there - she stayed in the McElligott house that I lived in while she finished up some coursework (I think). Somehow, she knew the McElligott family - I was friends with the youngest sister (one of 11 kids) and lived in that house for two years. Helen was always very nice and friendly and I was able to go up and reintroduce myself during the processional into Reser Stadium.
The other significant happening was that OSU conferred honorary bachelor's degrees on Japanese American students who had been sent to internment camps in 1941 before they could finish their degrees. There were 20+ of these individuals (or their families if they were deceased or otherwise not able to attend) out of a total of 42, I think. When they were called to the stage, first one person in my row and then I stood up to begin a standing ovation that lasted several minutes. (There were others in the crowd that stood up, too, I think.) The Japanese internment camps were a travesty and one thought I had was how long it had taken OSU to give them honorary degrees - two OSU students championed the effort and got the Oregon State legislature to pass resolutions to confer their degrees. One gentleman, whose name I've forgotten, was a member of OSU's Rose Bowl appearance in 1942, but because of the Presidential Executive Order that interned Japanese Americans, he was not allowed to actually play in the Rose Bowl. He had his Rose Bowl ring, though, which he proudly showed the crowd.
All in all, it was a touching event and one that I was happy to have participated in. Good job, Suzanne and Kate!
Saturday, June 14, 2008
Today, Scott drove down and after a late breakfast, he performed reiki on me. Again, I found it interesting that he found certain spots that were painful - places that I was holding on to negative energy and emotion. Between the reiki yesterday and acupuncture today, I've been trying to let go of the sadness and the anger and concentrate on the positive. Some of the thoughts I had were for letting go and also for healing during both sessions. Also, my acupuncturist put seeds in my ears on points responsible for "calming the spirit", "happiness", for sleeping, and for dehydration and supporting the yin, I think. I think it's working because I do feel more myself, less lonely, more happy. It helps that it's sunny.
I also decided yesterday that I would break plates and let go of the anger. But I had some trouble trying to figure out how to do that. When I first got the idea yesterday, I wondered where I could go so that no one would hear me. And, I didn't know what to do with the shards. Then, while talking to dad who was working in my yard, I decided that I should make a mosaic and entitle it, "Letting Go". If someone asked why I was breaking plates, I would tell them that I was making a mosaic.
So, yesterday afternoon, I bought some plates in a variety of colors at Goodwill. After Scott left, I got out the plates and a tarp. I just set the tarp on top of a large stone and then threw a plate at it, but the shards flew everywhere. Then, I draped part of the tarp against the fence and put the plates on the ground on the tarp and threw rocks and that worked, too, but shards flew everywhere. I finally got the bright idea to put all the plates on the tarp right next to a fence and then I folded the other half of the tarp on top of the plates. I anchored down the edges of the tarp with large rocks. Then, I threw rocks at the plates. In this way, I kept all the shards from flying and they were contained in the tarp and I also had the fence as a backdrop so the rocks wouldn't fly everywhere. There are still a few large shards, but a lot of smaller ones. When I told the Mandala Lady my plans today, she said "I just got chills- you definitely need to do that!"
Dad mentioned yesterday that I should put some raised beds on one part of the yard (which really looks bad). I think that I will somehow work a mandala mosaic in between some curved raised beds in that area. Now, I just got to figure out how to do that . . .
I found this reply in my inbox this morning. I think she just insulted me!
Dear Ms K,
I believe this is your first reply. We know the ethics of product review. In fact, we have sent invites followed by the product itself, to a few selected bloggers, whom we thought are intelligent enough to try our product-for free and do a review about it.
Unfortunately, it was a mistake sending you an invite.
Our deepest apology for taking too much of your precious time.
Friday, June 13, 2008
After my acupuncture treatment today, my acupuncturist told me to write a gratitude list. After I told her about how I'm feeling - the anger and the loneliness - she decided to put needles in spots associated with suppressed anger and also with letting go. What's interesting is that as she felt around for these spots, they were tender! To me, this tells me that these were areas that had stagnated energy that needed to be unblocked - in other words, I believe that acupuncture really works.
Okay, on to the gratitude list.
I am grateful for my dad, who spent several hours today rototilling my yard so that we could finally plant flower seeds and make a meadow out of that part of my yard.
I am grateful to my parents for taking care of Eddie this morning and generally making my life easier so that I could go to acupuncture, get the rototiller, go to radiation, and meet with Alex, a grad student.
I am grateful to Alex for doing all the technical computer work necessary to get the King Island Gallery online - this gallery will contain the 8,000 digital photos that were taken during the course of the King Island placenames project. Once it's launched on my departmental website, I will post the link.
I am grateful to Scott, who is still willing to be my friend and who will be helping me tomorrow with letting go of the relationship.
I am grateful that my son is happy and healthy. He has been quite patient throughout these past few weeks especially.
I am grateful to my acupuncturist for helping me to deal with cancer and other life events.
I am grateful to Terri and Callie - my radiology technicians - who were very sweet to me today when I told them that I'd been having a rough time.
I am grateful to Cat and Jeanne - who both, in different ways, offered the support I needed via email.
I am grateful to Rick who took time off work today to pick up the rototiller and then to bring it back later.
I am grateful to all of my friends who are sending positive thoughts my way.
I am grateful that the sun is shining and it's warm - finally!!
I am grateful to Karen for getting the paperwork that I asked for completed this week.
I am grateful to my son for being patient with me as I work through all of this stuff.
I am grateful that I have insurance.
I am grateful to my program officer at NSF.
I am grateful to my colleagues who are there for me, too.
I am grateful for love.
Thanks for listening to this . . .
Several people have asked me how they can help. A lot say, "just call and we'll be there for you". Well, in truth, it is hard for me to call right now to ask for help. It's all I can do right now to maintain daily life - taking care of my son, going to radiation and other appointments. When I do have time, I'm feeling angry or sad or alone. I'm trying to keep up my spirits. But it's hard and I need daily reminders, not just from myself, but from others, that I need to focus on what I'm thankful for - for what I do have and not on what I don't have.
So, my request is this: please call or email me. Invite me to coffee or for a walk or a hike or take me out to dinner. Offer to bring me over dinner.
I am having a hard time right now. I'm trying to come out of it and there are a lot of people who are trying to help me do just that. But, please, don't make me do the work of initiating contact. I appreciate it if you all initiate it - it takes me less energy to respond than to call you. I'm afraid of bothering you, you see, because I know that you all have your own issues. One of my friends may be losing his job; another has a troubled son; another has a mother who is getting more and more frail and a difficult sister; my family has their issues; another has a troubled daughter; another is facing bankruptcy. I don't want to bother you when I know you're dealing with all of that stuff because it makes me feel bad that I'm taking you away from what you need to deal with. And, I don't know when you are able to take on my stuff on top of it. That's why it's easier if you initiate the contact. I would appreciate it very much. Love, Dee
I just received the following email that has made me very angry. Can you believe that some company is asking a cancer patient to pitch their product? Without even offering me a chance to use the product to see if it's useful or not? Or better yet, pay me to advertise their product? Unbelievable!
I am the webmaster of _____
I was reading your blog and I see you have a very impressive way of describing things. The information you provide is very helpful. So I was wondering if you could take a look at our product XXXXX and write a review about and post it in your blog.
I would really be interested to know if you would be able to post the review in your blog with links to our site.
Here is my reply:
Dear Ms. Williams,
First, I do not use my blog to advertise products. If I did, I would be using
Google's AdSense and make some money off my blog. Or I would have a "donate"
button where people could transfer money to a Paypal account. Even though I
could certainly use the money since I'm in active cancer treatment, on
sabbatical and a single mom, I started my blog to gain support from friends and
family for breast cancer, not to make money. And, there are other cancer
bloggers out there who are in worst financial straits than I am so I don't feel
that it is ethical for me to compete with them since their needs are greater
Second, you did not even offer me the product to test in order to write a
review. This strikes me as unethical to write some kind of review without even
trying out the product. Why should I write a review for some product I have no
experience of? As an academic, I write reviews of books that I read that relate
to my profession - but when I am asked to write the review, the publishers send me a free copy of the book. The goal is to evaluate that book's contribution to furthering scholarly knowledge and not necessarily to advertise that book.
Finally, you did not offer me money to write a review. Why should I take my
precious time, which is in short supply right now because of daily radiation
treatments, to write about a product I do not know? I need to use my valuable
time to work (which does pay me money), spend quality time with my son (I have
metastatic breast cancer and my son is young and needs me), and concentrate all
of my efforts to fighting this disease.
In fact, you've already taken too much of my time already. Obviously, my answer
Wednesday, June 11, 2008
Okay, I really wanted to know how to figure the progress of the radiation treatments - both how many cells it killed each treatment and then how many cells divided overnight. I developed a spreadsheet with the results. I have saved the spreadsheet. I think I have the math right. It seems right, anyway. But the whole process involved some research.
I had to know how many were killed each time. My rad onc said that each radiation treatment kills about half the cells. Easy enough.
But I really didn't know the rate at which cells divided (otherwise known as mitosis - I think, so don't quote me on that).
So, I looked up the mitotic score of my "tumor" (cancer tendrils) and it was 1/3, or slow growing. Cool. They originally told me medium growing.
So, then I had to find out how often a tumor doubled in size. The average rate is 4 months - a tumor will normally double in size every four months. So, if I had a tendril that was 1 cm long, four months later, it was 2 cm long. I used the average rate, rather than the slow growing rate.
Okay. Say I have 100 million cancer cells in the area being radiated. If nothing is done, it will double to 200 million in four months. Divide 100 million by 120 days to get the daily rate of cell division (the number of days in four months) and you get 833,333, which I rounded up to 1 million. So, in one day, 1 million of the 100 million have divided, or a 1% rate. (I'd been using 20%.)
I developed a spreadsheet, showing treatment days and then no treatment days. No treatment days are week-ends, and I also have no treatment days next week, when I will be away in DC/Raleigh. There is also a no treatment day on July 4. I got it all scheduled and calculated. Treatment 28 will be on July 15.
You want to know what's weird about that? My sister and I rented a house in Lincoln City for July 15-18. We originally requested July 14, but the property owners asked to either add a day or take away a day so that they could have a two-night stay for someone else. We took away a day. How weird is that? It is almost like it was meant to be. So, those days in Lincoln City will really be a celebration of me finishing radiation treatments! (At least the first 28. My rad onc will have to wait until I return for those boosters she wants to do.)
I won't go into the details of the calculations, but I believe it is accurate since I didn't calculate the dying of cancer cells on no treatment days, only growth.
And, the other weird thing, after 28 days, I only have half a cell left, according to the spreadsheet.
So, there IS a reason behind the magic 28 day mark for radiation treatments. At least, using the round number of 100 million cells to start.
According to my spreadsheet, after my treatment today, there are only about 427,000 cancer cells left. With an original start of 100 million. Take that, you little buggers!
That feels good to have so many of them gone. Tomorrow morning, when I go in for the treatment, it will be 432,000.
I will keep you posted - not everyday, of course - but now that I've started this countdown of cancer cells, I can't stop. This way, we'll all have something to hang onto as I complete these radiation treatments. Eyes on the prize, right?
Again, I really don't know how many cancer cells there are. But I've decided to start with the nice figure of 100 million. (Well, maybe not really nice, but realistic.)
I started Monday with perhaps 10 million cells. I've had three treatments, so after treatment on Monday, it was down to 5 million. It went up to 6 million overnight, then Tuesday's treatment cut out another 3 million. This morning it was up to 3.6 million. Today's treatment got it down to 1.8 million. Tomorrow, I start with about 2.16 million. Thursday's treatment brings it down to 1.1 million. Friday morning, I will start with 1.32 million, and Friday's treatment will bring it down to 660,000.
I think I will work on a chart that will calculate this through all of the treatments. It will help me remember to be thankful for these treatments instead of seeing them as a drag. It helps keep my eye on the prize, right?
Something that I need to be reminded of pretty regularly lately is to remember that there are things that I'm thankful for. The recent research that's been coming out about how giving thanks on a daily basis increases one's overall sense of well-being is sometimes hard to do, but it is a good exercise.
To that end, I need to thank some people. They've all been there to listen to me and to see me cry, or they've emailed me and asked me what else they can do to help, or they've reminded me that I just need to call and that I'm always free to hang out with them. They've offered some helpful advice or stated some bald truths that I needed to hear whether or not I wanted to hear them. These individuals are, in no particular order: Scott, Rick & Tammy, Heather, Josh & Amy, my folks, my sister, Sunil, Brenda, Susan, Carver, Jeanne, NYC Jeanne, Karen, Missy & Andy, Irene, and Nancy. There are probably a couple more and I'm sorry if I've missed you.
You've all reminded me that I am, in fact, not really alone. You are all there helping me with this fight. I plan to report someday that we're making some progress. Someday soon, hopefully. Thank you, all.
Yesterday, I showed "Slow Burn" to my counselor and she pointed out something that was obvious but yet the conscious thought never entered my head.
"Slow Burn" looks like the sun. The sun "radiates" heat and light. Hmm. Interesting that that came up while coloring about how I was feeling - and having to do daily radiation treatments.
Also, "slow burn" refers to this low-lying anger I feel, but it could also refer to 1) the slow burn that the cancer cells are receiving from the radiation; 2) the slow burn that my skin is getting from the radiation; and 3) the burning sun (well, it is burning pretty quickly, I suppose, but because it will burn for millions of years - it's "slow" in human time. Does that make sense?
And, finally, the sun's radiation is life. These radiation treatments mean life.
You wanna know what was in my appointment book this week?
6pm Department Awards Dinner
12pm hair cut
1-3pm Eddie's class end-of-school party
10am coffee with a colleague
12:15pm transport Eddie and classmate to school swimming party
1pm Zoladex injetion
1:30pm reserve rototiller for dad's use in my yard
2-3pm Eddie's school's swimming party
10am meet with grad student working on King Island picture gallery
11:30am pick up Eddie for last day of school
9:30am pick up rototiller
12:30pm return rototiller
Last week was:
11am dentist appointment
11am doctor's appointment
2:30pm wound care appointment
12pm lunch with friends
pick up Eddie's report card
1pm doctor's appointment
fly to DC
meetings at NSF
Fri pm - fly to Raleigh to visit friend
Sunday - fly home
And remember that there are also the daily things like transporting Eddie back and forth to school, playing softball or volleyball, and other running errands.
And people wonder why I'm getting tired. There's just too many flippin' appointments and not enough time to actually work lately.
Tuesday, June 10, 2008
Another thing that came to me about the mandala (which is entitled "Slow Burn" - scroll down to the "Controlled Anger" entry) was that it seems to be representing this process I'm going through.
First, the original mandala was asymmetrical - it felt disordered and, frankly, a bit ugly to me. This represents the cancer diagnosis I received last fall. So, then I added lines to make it symmetrical - this represents me trying to gain some control over it - all the actions and treatment decisions I've made since then. I was trying to impose order. I then added flames which represent to me that the order I was trying to impose is getting out of control again. I feel out of control.
This makes me realize the fine balance that exists within me - I wrote awhile back about "life on the edge", where one thing can tip me over. I'm still walking on the razor's edge. I was starting to fall. The anger I feel right now is helping to keep me upright.
Monday, June 9, 2008
I just found out that NSF released the next year's funding on the grant having to do with Alaska Native Corporations. (I was in Portland for this project two weeks ago.) The release of funds is a bit early, but it will be a huge relief because now I have funds to get to Alaska sometime this summer or early fall in order to do some research, I will have funds to hire a grad student to help me out with this project some, and I will be able to use the summer salary funds in the grant that will relieve some financial pressure this summer.
Whew! I really needed some good news.
You know Elizabeth Kubler-Ross's Five Stages of Grief? Well, I think I'm going through them. The stages are, in no particular order: denial, depression, anger, bargaining and acceptance. I feel like I'm losing control - that the cancer is doing what it will and even though I'm trying to do whatever I can, it feels like it's not making a difference.
I was still pretty sad and depressed yesterday, although I did get out there and attended a couple of social events. I had to force myself to go because I knew it would be good for me and it was. Last night, though, I still felt sad and a sense of despair was there. This was because 1) yesterday, I found some more nodules of skin mets in the area under my implant that I didn't know was there; 2) my big toe still protests getting into shoes (I injured my big left toe in a softball game a month ago) and I found that when I do try to run fast and then stop, I can feel it, so then I don't feel like I should run as hard playing softball so then I can't play as well as I know I can; and 3) even though it only got to 75 yesterday, I felt SOO hot. It was kinda crappy how quickly hot and uncomfortable I felt. I've noticed since I've been on Xeloda and Tykerb, that when I do get hot enough to sweat, my sweat feels prickly - like a bunch of little needles. So, I cried during the game. I just feel frustrated and have this feeling of "when is it going to end?" Also, I think the skin under the implant is already feeling the effects of radiation - it felt a bit like a sunburn on Saturday. Sigh.
I did some bargaining with Scott late last week . . . I told him that I like his support to get me over this hump, then I would try not to bother him as much any more. I don't think I ever felt in denial - it was more like a "why can't I get a break from all this crap?"
Anyway, this morning, I felt like I should color the mandala. I don't particularly like this month's MOTM (www.maiahcreations.com/MOTM/) because it seemed kinda sloppy and was asymmetrical. I didn't feel like coloring it. See the June Mandala. Then, I decided that I could add to it and make it symmetrical. Then, I decided to color it in angry colors. Since I started coloring it, I'm beginning to work up a full head of steam of anger.
I am angry at finding more skin mets.
I am angry that the weather isn't nicer and it's cool (about 60) and cloudy.
I am angry that I'm not able to play softball like I want to.
I am angry that I can't live a "normal" life like my friends and colleagues.
I am angry that I have to go to radiation everyday.
I am angry that I don't have a partner.
I am angry that I've been so wrapped up in what I'm feeling that I've ignored my son and haven't had energy for him.
I am angry because I've lost so much: my breasts and eventually one of the implants, time, my big toe nail, a sense of a normal life, a partner, control over the cancer.
I am angry because of the daily reminders that I do have cancer: radiation treatments, having to change the dressings over the open wound at least twice daily and also because the dressings begin to leak from the fluid.
I am angry that when we go to the coast for a few days next month that I won't be able to go into the hot tub and when it's hot this summer, I won't be able to go into my friend's pool because of the open skin wound.
I am angry that I can't be in the sun as much as I want to.
I am angry that my face still breaks out (although it isn't as bad as it was in March).
I am angry that I have to fight this shit every day.
I am angry that I've been crying so much lately.
I am angry because I have to talk myself into going to social events.
I am angry because I know of someone who died of cancer last week and I just feel so bad for her family (see the link to Jane's Life on the blogs that I read regularly).
I am angry because I believe that environmental contaminants, including everyday household items like mattresses, have contributed to my getting cancer.
I am angry because money I could be using to fix up my house or to travel and have fun is instead going to cancer treatments.
I am angry because a lot of people don't understand what I'm going through.
I AM ANGRY.
But you know what, it's a controlled anger. It's not the kind of anger where I want to yell and scream and throw things. It's a controlled, calculating kind of anger - a slow burn, if you will.
And, feeling angry feels better than feeling helpless and alone. I will post a picture of the mandala after I finish it.
Sunday, June 8, 2008
I have already colored two mandalas, that I gave to Scott. He's been a real source of support for me these past couple of weeks, even though we aren't together any longer. The first one was colored in my colors - blues and greens - and it says, "There is peace in knowing you are always there for me".
The second one was colored in his colors - reds, greens, and browns - and it says "The joy I seek is there for the asking". He saw his right away when he walked into the house - it was interesting how immediately drawn he was to it, which pleased me. He already knows where he's going to put them.
As I've been posting about the radiation treatments, I mentioned that I've been coloring these mandalas in the waiting room. A couple of other cancer bloggers I know (NYC Jeanne and Carver) both mentioned how soothing or relaxing it might be to color. So, I got the bright idea to have a group of cancer bloggers color a mandala - either the same or different ones - and post about them within the same few days.
I then went to visit "The Mandala Lady", aka Maureen Frank, who has a shop here in town called Maiah's Creations. Her website is: http://www.maiahcreations.com/. I told her my idea and she thought that it would be a cool thing to do. She then told me about her Mandala of the Month activity at:
This is where she uploads a free mandala and encourages people to color it. She'd like people to post photos of their mandalas to her website and we thought that it would be cool if she put the links to the cancer bloggers and/or we would link to her site to show them off. She encourages people to be creative and to have fun and also to not necessarily color inside the lines. So, go to the MOTM website and download the mandala and color it, take a picture of it, and then post it. She said that if anything comes to mind as you're coloring, she would be interested in hearing those thoughts and comments.
As we stood there talking about coloring these as a healing kind of exercise, she stopped, and said, "I've just been hit with something. Wait a minute." Then, "I think I might design a mandala for you cancer bloggers, but I will need to meditate some on what that might be."
At any rate, so far, Carver, NYC Jeanne, Seattle Jeanne, and Terri (The Cheeky Librarian) are going to participate and we hope to post something by June 23. Carver is already playing with hers and has already posted some photos:
Fun, huh? If you are so inclined, we would be pleased if there is anyone else out there who might want to join us! If you do, post a comment or let me know and we will try to post photos of all of them! Cool, huh?
Friday, June 6, 2008
Some of you may or may not know, but I broke up with someone recently - not because of how we felt about each other, but more because we each have too much going on in our lives to really juggle a relationship well on top of everything else. At any rate, these past couple of weeks, I've been struggling with a sense of loneliness and loss because I really had leaned on Scott during this latest cancer diagnosis and treatment and now I didn't have him to talk to as much anymore. We are trying to be friends and we started hanging out with each other with this idea in mind, but I realized that I was still falling into more relationship mode than friendship mode and was sad when he didn't reciprocate - my fault not his because we talked at length about how this might work. He does want to continue to be there to support me as I navigate treatments and such. So, my friends told me that I needed to try to get used to the idea of just being friends and I agreed but we all realized that it was going to be hard for me because I was feeling lonely.
Anyway, I chatted some with the social worker at the cancer center today and all the things that I do to get support through my treatments and somehow I was reminded of all the recent research that suggests that people who remember to be thankful for something everyday are generally happier. Another blogger, Laurie, at Not Just About Cancer, blogged about "moments of joy". Then, I talked to this woman, Maureen, who draws these wonderful mandalas that I've been coloring at the cancer center. I will blog about this later (her website is www.maiahcreations.com/).
Afterwards, it hit me.
I need to be thankful that I have a friend instead of upset and sad that I don't have a partner.
Thank you, Scott, for your friendship.
So, I have completed a whole week (Mon to Fri) of radiation treatments and so far so good. I have some redness in my skin - different then the redness before, but my rad onc said that redness was the goal. I'm keeping the area moist and hope to stave off any more skin damage using these ointments they gave me.
My rad onc wanted me to do at least 28 treatments and she said that she might want to do some booster treatments afterward, hence the 23+ to go. One of the techs told me that it's too early to start counting down - I said it wasn't. Keeps the goal in mind, ya know?
I figured that I had 10 million cancer cells (hard to imagine that many) at the beginning. After treatment 1, it was cut by 50% to 5 million, but I figured some cells divided over night, so Day 2 started out with say, 6 million (I thought originally 5.75, but I figure I should pad it some more, just in case). After Day 2, it was down to 3 million. Then after Day 3, I'm guessing there is still 1.75 million. Then, after Day 4, 1 million. Now, there are 600,000. By Monday, it will have had three days to multiple, so using a factor of 20% growth each day (which is how I calculated the ones above), I will have 1.037 million and the cycle starts again.
But maybe it was more like 100 million cancer cells, which means that there are 6 million left and by Monday, it would be back over 10 million.
You get the picture, at any rate. I got to remember that even though it's killing some, the ones that are left are dividing again. Which is why there are so many treatments.
I do believe I have less lymphedema under the right implant. Which means that enough of the cancer cells are dying and allowing the lymph fluid to clear. At least, that's the story I'm telling myself.
Thursday, June 5, 2008
I posted a picture of the first mandala I colored at the Cancer Center down below:
You'll have to scroll down the post a bit . .. I think I'm going to buy my own mandala coloring book and some colored pencils so that I can do it at home. I find that it really relaxes me! Did I tell you that on Tuesday, after my treatment, my blood pressure was only 116/62 and then when I saw the wound care nurse (who pinched my arm the last time she took my blood pressure), it had risen to 120/82. I think the coloring has something to do with it.
I had an acupuncture appointment yesterday and because of how I've been feeling lately, Brodie decided to do cupping to acupressure points that have to do with the lung meridian or lung chi. I've been feeling pretty lonely. Between breaking up with my partner, going on a date that wasn't quite right, and then starting radiation therapy this week, I just felt all alone - all my friends are married, none have cancer, and I feel like I'm navigating this whole cancer thing all alone. At any rate, this particular treatment is supposed to help release those negative emotions. So, now I have alien hickies again and I do feel somewhat better! : )
My friends yesterday and today (thanks, by the way to Andrew, Tammy and Rick, and Scott) reminded me that I am not alone and that I can call on them any time and that it's okay to miss my partner, that I shouldn't have to navigate cancer by myself and also that's okay to need someone to just cuddle with sometimes. So, I feel a bit better . . . My family has been great, too, but I still wish I had a partner.
The other day, when dad was working in my yard and we were chatting about next steps, we saw one and then a whole little group of cedar waxwings descend upon the red hot pokers in my yard. I ran in and got my camera and took a few shots, but the telephoto on my camera does allow me to get real good close-ups. So, then I attempted to get a bit closer and they all flew away. I saw them again yesterday, on our way to drop Eddie off at school. Cool, huh?
I'm sorry that the image isn't clearer . . . maybe I can ask for a better camera from Santa!
Wednesday, June 4, 2008
One of my colleagues, Kelly Falkner, who is on a temporary assignment to the National Science Foundation, has organized a team for the Komen Race for the Cure in Washington, DC, this Saturday. Kelly and her family are running the race in honor of me, Marta Torres (also on faculty at OSU), and Alex, who I believe is at NSF.
Their team page is at:
I am very touched by these efforts - and thank you very much to Kelly for honoring me in this way!
Tuesday, June 3, 2008
I had my second radiation treatment today - stil uneventful. I noted last night, though, that the skin under the implant was redder. My rad onc said that they actually want to see red skin from the radiation because it means that the radiation is hitting its target.
And, my title yesterday "5 Million Down, 5 Million to Go" had to do with the idea that each radiation treatment kills only about 50% of the cells. I have no idea how many of the little buggers are running around there, but radiation cut it in half yesterday and half again today. 10 million seemed like a good round number. So, yesterday, we got rid of 5 million, but then some of those divided in the last day, so say there were 5.5 million (just guessing) today, radiation got rid of half, so I'm at about 2.75 million already! Or, at least, one hopes. Time will tell.
Also, because of the lymphedema under the tissue expander, I got this idea last week that perhaps the skin punch biopsy had poked a little hole in the implant and that when I used my arm repetitively, it was causing some of the fluid to leak out of the tissue expander into that area and causing more swelling. So, I saw my plastic surgeon today and he said that, no, it seemed fine because he thought that the implant would be a lot flatter.
My plastic surgeon did say, however, that now that I'm getting radiation again to that same area, that I am no longer a good candidate for an implant. Instead, he would recommend a pedicle (I think) flap procedure where they would take some of my tissue (probably from my belly) and bring it up under the skin. He thought I would still have an implant on the left. They won't match exactly, but I'd look more or less normal under my clothes. In terms of timing, it would probably be months before that happened, but that we could do the surgery locally. After radiation, he'd probably want to wait at least a month before doing surgery. I asked him how that might work if I still had an open wound and he did say that since he's been here, he was involved in one surgery where the woman had a rather large skin ulceration and cancer in her chest wall. He said that they were only going to try to salvage what they could, but that the end result was better than expected. I think what he told me is that if I still had an open wound, they might go ahead with surgery. I guess that means I won't worry about these 5+ pounds I've gained since taking Xeloda!! Maybe the flap procedure will take care of it for me! : )
I colored the mandala again today -it's kinda cool that they keep all the supplies there for patients to use. Interestingly, after my treatment today, they said the nurse and the dietitian wanted to see me, so while I waited, I colored some more. Then, the nurse took my blood pressure - 116/62! Really good, huh? Then, I had to go to the wound care nurse and then she took my blood pressure again. Last time, her automatic cuff hurt, so I was thinking about that . . . and my blood pressure jumped to 120/82. Yikes! I'd also walked up the stairs about 10 minutes before that. (Note: I took a picture of it the day after I posted it and decided to put it here instead of in a new post.)
Also, I think I concluded after last night that I'm not quite ready to date again. I thought I might be ready, but my heart really isn't in it. So, while I'm not going to shut down my profile on eharmony, I will not also pursue communication with any new matches. It's okay . . . I still need some time to process stuff!
Monday, June 2, 2008
So, I had my first radiation treatment today (well, the first one in 5+ years) and it was uneventful. The whole time I was laying on the table and the machine was whirring, I imagined a ray blasting those cancer cells to smithereens, and, then, alternatively, a cleansing/purifying shower washing out the dirty cancer and replacing it with pure clean water. I need to practice my visualization more. They were running a bit late, but while I waited in the waiting room, I was able to relax while coloring this mandala coloring book. They had some colored pencils that I was using. It was kinda fun coming up with a color design on the mandala. I loved designs like that as a kid and I enjoyed coloring. I enjoyed the focus and I think it helped put me in a frame of mind where I could imagine cancer cells dying.
I also had my first date with Boat Guy. I forgot to tell him, though, that I blogged about him, so until I do, I'm going to take down that post about dating again. The date was fine - we're still getting to know each other. I don't feel like I can say more . . . so while I might tell you in person, I'm not going to blog about it at the moment! Sorry! : )
Sunday, June 1, 2008
For the past week, using these new dressings on the open skin wound, I've been feeling, well, put upon, if you know what I mean. It's just one more thing (an open wound, changing dressings, weeping fluids) - like adding insult to injury.
Well, I just got through cruising through some other people's blogs - one woman in active chemo just shaved her head and has decided to start getting more used to being bald in public and to hell with what people think (my words, not hers) and another woman talked about going to a Halloween party as a vampire hunter when she had a shaved head.
So, I just decided that I needed an attitude adjustment regarding these dressings. So, instead of feeling like it's all a pain in the butt, I think I will just see the dressings as making me LESS lopsided!