In June, over three weeks, I will get my "primed" t-cells back. T-cells are part of your body's defense against disease - t-cells are a type of white blood cell. These "primed" t-cells are hopefully what my body produced after the three vaccinations I received earlier this month.
In my last post, I called them my super-duper-Her2+-cancer-seeking t-cells. I decided that I need to come up with a name for those super-duper-Her2+-cancer-seeking t-cells. So, I decided that I'll have a t-cell naming contest. I'll send the winner either a colored mandala or I'll create one just for you.
Can anyone come up with a good nickname for these super-duper-Her-2+-cancer-seeking t-cells? You have until midnight on May 2 (next Sunday). (I'm going away for a week-end symposium retreat for work from April 30-May 2). I'll judge the entries on May 3rd.
So far, the entries are "Herminator-2 cells", "H2Life cells", and "T-cell choppers". Anybody else have any ideas? Fun!
Another fun thing is that I leave tomorrow afternoon to go to the H.J. Andrews Experimental Forest. I am attending a week-end symposium called "Dragonfly Eyes: Multiple Ways to Envision the Future". There will be a mix of poets, artists, scientists, and social scientists, hoping that we can all learn how to envision or work toward (I think) a future from our different disciplinary and personal backgrounds. Good food, good conversations, hikes in the forest, and good wine. I'm looking forward to it!
I was really tired tonight and tense for some reason. No reason to be tense. Things are hunky dory more or less, meaning I'm in a relatively good mood. Just tired. But I got a lot done today. I hope to get to bed at a reasonable hour (10pm). Good night - not sure if I'll blog when I arrive. Have a great week-end!
Thursday, April 29, 2010
In June, over three weeks, I will get my "primed" t-cells back. T-cells are part of your body's defense against disease - t-cells are a type of white blood cell. These "primed" t-cells are hopefully what my body produced after the three vaccinations I received earlier this month.
Tuesday, April 27, 2010
Last Thursday, I had blood drawn to measure my blood chemistry and tumor markers. In the end, I am not really sure how to interpret them - one stayed the same, the other went up, my lymph nodes, which seemed to shrink a little, are about the same. So, when I told my parents last night, my dad's response was "status quo". So, yes, maybe it is status quo - no worse, but no better either.
Here are the numbers:
Here's the CA15-3.
Sept 2007 - 23 U/mL
Jan 2008 - 31 U/mL
Mar 2008 - 36 U/mL
June 2008 - 23 U/mL (started radiation that month)
Aug 2008 - 18 U/mL (week of August 4th)
Sept 2008 - 14.5 U/mL YAAAAAAY!!!
Oct 1 2008 - 19.6 U/mL
Oct 31 2008 - 15.3 U/mL
Nov 28 2008 - 19.5 U/mL
Dec 30 2008 - 16.0 U/mL
Jan 22 2009 - 15.4 U/mL
Mar 2 2009 - 17.8 U/mL
Apr 8 2009 - 19.6 U/mL
May 5 2009 - 18.4 U/mL
June 4 2009 - 19.7 U/mL
July 2 2009 - 22.1 U/mL
Aug 3 2009 - 29.7 U/mL
August 31 2009 - 31.9 U/mL
Oct 3 2009 - 38.7 U/mL
Nov 2 2009 - 36.4 U/mL
Nov 30 2009 - 38.5 U/mL
Dec 28 2009 - 37.5 U/mL
Jan 25 2010 - 33.8 U/mL
Mar 8 2010 - 30.9 U/mL
Apr 22 2010 - 30.0 U/mL
I'll post the CEA numbers. Anything 3.8 and under is "normal".
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
My colleague, S., thought that maybe the CA15-3 was giving me reliable news, while my oncologist, last month, thought that the CEA was giving me better news. Dr. K (my oncologist) thought that if you look at the tumor markers in association with my lymph nodes, that might give us a good picture of what's going on. Since the lymph nodes are about the same, then maybe we can assume that things are about the same.
Remember that the CEA measures the amount of "cancer embryonic antigen" - which is basically the amount of dead cancer cells (as I understand it) in your blood. The problem is that they don't know whether it's measuring dead cancer cells that have died as part of their normal life cycle or whether they are dead cancer cells from cancer treatment. There is some research (which I think I posted at some point) that suggests that a "spike" in the CEA, especially after starting a new treatment, is an indication that the treatment is working. Dr. K said, however, that the lymph nodes often start shrinking on their own if a treatment is working. But I'm also thinking that the swollen lymph nodes is the body's way of keeping cancer cells from going elsewhere throughout the body - it's like when you have strep or something, your throat lymph nodes are swollen because they are catching/corralling the bacteria (dead bacteria?). So, might my lymph nodes be swollen because they are catching the dead cancer cells coming off the lungs from the treatment? Or are those cancer cells in my lymph nodes alive? Inquiring minds want to know.
Unfortunately, I don't think anyone in the medical field really knows what's going on in cases like mine. This is when cancer treatment becomes more of an art than a science.
I'm okay with the status quo. I'm not going to get too up in arms about it. I'll wait until June when I get my super-duper-Her2+-cancer-seeking t-cells (white blood cells) back as part of the UW clinical trial. The wikipedia article (which I think I posted) said that a man who got his t-cells back had his tumors disappear within 8 weeks after the t-cell infusion. I think I need to come up with a name for those super-duper-Her2+-cancer-seeking t-cells. Anyone got any ideas? That's it. I'll have a contest. I'll send someone either a colored mandala or I'll create one just for you to whoever I judge to be the winner (and/or I'll post it on Facebook and see which one gets the votes).
Hmmm. I like that idea! : ) Can anyone come up with a good nickname for these super-duper t-cells? You have until midnight on May 2 (next Sunday). (I'm going away for a week-end symposium retreat for work from April 30-May 2). I'll judge the entries on May 3rd. Fun!
Sunday, April 25, 2010
I had my latest Herceptin treatment on Thursday - and felt fairly good the rest of the day. Maybe a little bit of tiredness but not the eye-droopy fatigue I've felt before. I went into my office and printed some stuff off to work at home (not that I've touched it).
Friday, I went on an all-day fieldtrip with Eddie's class. We went to the State Capitol in Salem, then the Mission Mill Museum, and then the Pioneer Cemetery. We walked up to the top of the tower - where they have this huge golden statue of a "pioneer" which can be seen for miles. It was pretty cool but over 100 steps up. We had lunch in the plaza in front of the Capitol.
Mission Mill was interesting but rather than teaching kids about how mills used to work and how wool was made, she kept whizzing the kids through the exhibits (we had a "task-mistress" for a tour guide who kept saying, "okay, we're power walking!" - followed by a really brisk walk to the next exhibit where she'd start talking before we all got there. Then, since the people at the back didn't hear the beginning, we didn't know what she was explaining! That's not a good tour guide - that's giving the tour but not paying attention to your audience, which my students in folklore know is a crucial part of any kind of oral performance. Some of the parents, including me, would salute behind her back - mean, I know, but criminy!)
Then, after a snack, we went to Pioneer Cemetery and saw the headstones for people who died over 100 years ago - some as early as the 1850s, maybe 1845. Eddie had fun because he and the other boys started chasing the girls. : )
Then, we got back to Corvallis around 5pm. I had a great time visiting with the other parents (there were 8 of us and 14 kids). We got caught up, joked, helped some with the kiddos, and just enjoyed the day. We had high clouds, but by the end of the day, it was in the low 60s with some sun peeking out here and there.
By the time I got home, I was really tired. Took it easy by watching TV in my bed. My feet were achey from all the walking.
Yesterday, one of my friends from UAF was in town - she'd come down here to interview a few people in Salem and Portland, then went to Newport to visit an old friend of hers, and we spent a few hours hanging out. We went to Farmer's Market (with my folks and Eddie), then the New Morning Bakery for lunch, and then K. and I went to Fitton Green for a short hike. It was chilly up top with a stiff wind. We got back into town and I showed her all the flowering rhododendrons around the MU Quad and then Central Park, and then we stopped at Trader Joe's - she had to pick up some stuff for a friend. And, then she was off to the airport. It was great to visit with her - it's been a couple of years since I've last seen her. I love hanging with old friends!
I was tired again yesterday evening - just took it easy again watching movies.
Today? I got a good night's sleep - we may go to Home Depot to get supplies for a side shed, I want to grout my mosaic, I need to go to softball practice and sign the roster - I might go for a walk with a colleague. So a full day is in store, putzing around, doing errands, etc. It's supposed to be 70 and sunny. Got to get out and enjoy myself!
Overall, I haven't quite the fatigue I had with previous treatments. I'm still tired, but not the droopy-eyed fatigue. I still have the swollen lymph nodes - I thought there had been some decrease in the swelling last week, but now it's about the same. I'll call tomorrow for my tumor marker results from the other day. I credit the new herbs that Brodie gave me - they do seem to help with my energy level.
Thursday, April 22, 2010
I love this time of year in the Willamette Valley. All the rhodies start blooming. I love rhododendrons! I've been taking these pictures over the last couple of weeks using my Droid phone . . . posting them to facebook and have finally got around to posting them on this blog. Enjoy! The last one - a blue bush - is not a rhodie. I don't know what it is, but it's beautiful!
In June, I will have to have a cytoxan treatment, just before I get my t-cells back. Cytoxan is a conventional chemotherapy, with a side effect of hair thinning. So, I decided to have my hair cut short since it'd be easier to disguise the thinning and then easier to fix it when it starts growing back.
Anyway, here are the pics:
Last night, I joined my friend Amy to celebrate her birthday. Amy drove me up to Seattle for Visit #2. Here's a picture of us:
We had a fun time! Thanks again, Amy!
For visits #2 and #3, I was driven to Seattle by two of my friends, Amy and Heather, who just happen to be sisters-in-law.
Both trips, I had a wonderful time driving up to Seattle. We stopped in Portland in both instances for lunch. I took Amy to Saturday Market - she had never been - and that was great fun. We both got henna tattoos and I got my parent a new purse. It was a pretty day in Portland - almost 70 with high clouds and sun. We got to Seattle about 6:30-7pm and then grabbed dinner at Finn McCool's, near UW's campus. A nice guy waited on us.
The next day, we waited a bit longer for the vaccine, but we had lunch at Pike Street Market and looked around a little before heading home. We got home in record time (about 4 1/2 hours) - around 7pm.
This last trip, I took Heather (of My Xeloda fame) to the Hawthorne District in Portland. She and her teenage daughter and Amy are going to see Lady Gaga in Portland in August and they want to wear wild outfits. So, after lunch and looking at a Tibetan Buddhist store, we went into a vintage clothing store called the Red Light. We were there about two hours - it was a lot of fun finding outlandish clothes. I roamed the shop while Heather looked around. We looked around at Buffalo Exchange and found a few things, too. Another store, whose name I forget now, had some inexpensive jewelry - I found a pretty light blue wire-coiled bracelet for $4; some shell earrings that were mostly hot pink with purple for $5; and some round bone earrings with a pretty floral design for $3.
We got to Seattle about 6:30/7pm. Then we ended up at Finn McCool's (tried to go this Mexican place down on the water, but it was closed again) again and saw the same cute waiter. It was fun - this time we were there until 10pm talking. We found out that after 8pm, all appetizers and drinks are half-off. Cool!
The next day, my appointment was uneventful, but since Heather wanted to go Powell's, we didn't stay in Seattle to play and drove south. We only stayed a little while at Powell's - we were both tired and wanted to get home - she was home by 5:30pm and dad picked me up at her house - I was home by about 6pm.
Both ladies drove all the way up to Seattle and all the way back. I'd posted, after Amy's drive, how nice it was not to have to drive and just be a passenger. So, Heather wouldn't let me drive either.
Thank you very much, ladies! The generosity of your time, patience, friendship, and fun is much appreciated!
Now, there's a third friend I want to thank as well. This friend has been wanting to contribute to my traveling fund, but I said that it wasn't needed. However, there have been some unexpected expenses: I ran out of a couple of my herbs (and had budgeted for it) but a new one cost more than expected and I didn't realize that the scheduled maintenance on my car would be as expensive as it's going to be - I take my car in next week because all the fluids need replacing. I want to pay this car off this spring/summer and not have a car payment for a couple of years, so I need to keep it in as tip-top shape as I can so I can pay down my other debt. So, this friend has sent me some money to help defray the costs of the Seattle trips. Thank you, K.!
Overall, I'd have to say that Visit #3 was uneventful. Dr. C came into my room and asked me what side effects I have the previous week. I mentioned that I had some fatigue, but that it didn't seem as bad. The cold sore was healing. It seemed that I was fighting a sore throat here and there. The vaccination site began to itch about two days after the vaccine.
I told him that a couple of days after I received vaccine #2, I saw my acupuncturist and she gave me a new herb that helps with energy and I think it was working. Dr. C seems skeptical of herbs, but I think he figures if it makes me happy, he won't say anything.
All in all, last week, I had relatively mild side effects.
Dr. C is loosening up - it was good to see him joke around with the patient from last week, so that gave me the go-ahead to joke, too. I told him a boob joke. Heather also told them about the song she composed about Xeloda. I also told Dr. C another boob joke - about a man who was looking for bras for his wife at Victoria's Secret.
I mentioned the study that was cited in the Wikipedia article on cancer immunotherapy. Dr. C explained that that doctor had used both CF4 (killer cells) and CF8 (helper) t-cells to accomplish the disappearing of the tumors in the melanoma patient. He also said that it was his research group who thought that both the CF4 and CF8 cells should be used, but the doctor cited in the article only used the CF8 cells for a long time; then he finally added CF4 and got the great results. (There some politics there, to be sure, between the UW tumor vaccine group and the Fred Hutchinson group. From the perspective of a patient, such politics and competition is silly because patient's lives are at stake. We don't need the egos of these doctors. Why can't they collaborate and work together for our sake? Unfortunately, I know that, in the world of funding, the money goes to the person who out-competes others in terms of results. Yes, I know it can lead to innovation. But at what cost to patients? Okay - that's my soapbox for the day.)
I met the study coordinator, N, who was the person I'd been working with to schedule the visits, fill out the forms, get American Cancer Society lodging help.
The nurse, R, gave me the vaccines. We didn't have to wait as long as the week before for the pharmacy to send them up to the clinic. I was given the shot almost an hour after I got there. (The week before, it was 90 minutes later.) The vaccination site itched almost immediately and for a couple of days; now it seems to be healing.
Then, it was waiting for an hour to make sure I didn't have any allergic reactions. No problemo!
All in all, an uneventful visit. Had a great time with Heather on the way up. We colored mandalas while we waited. Then, we went to the cafeteria, got some snacks and hit the road. In Olympia, we stopped for a quick lunch. We wanted to go to Powell's (she had never been). We were pretty tired, though, since we'd been up since midnight the night before. So, we didn't stay long. But we visited with a friend, who met us there. I think I was home by about 6pm. And, my folks had dinner waiting for me.
I'd have to say that I like the staff for this study. Dr. C seems friendlier, more relaxed now. D., the nurse, was taking an extra day off, but she's super nice. N., the study coordinator, is very friendly and helpful. The nurses, R., E., and P., are also quite friendly.
I get leukapheresis at my next visit. I will have to have a catheter inserted into my neck. I have these visions of looking like Frankenstein. But they say that it won't be too much more different than having an IV. It is a 4-hour procedure, though. Next time, my sister is taking me up. Yay!
Tuesday, April 20, 2010
I just wanted to let you all know I haven't dropped off the end of the earth. I'm doing well. A bit tired yesterday and today, but not the eye-droopy fatigue of last week and the week before. I was quite euphoric today - partly because I had more energy, partly because I won't have to travel north for a few weeks, partly because I only had one appointment today. I also saw lots of flowering rhodies (will try to transfer photos from my facebook page). The powers that be must've known I was in a good mood today because when I left my office to pick up Spagedward, I walked through the MU Quad - and was greeted by the songs and chirps of many birds. Lots of them. I didn't really try to figure out how many because it was raining and didn't want raindrops in my eyes. But the sound was very cool! I posted on facebook, "the birds are having a concert in the quad" and they were. One of my friends answered, "I think they were trying to tell you that they were happy that you were happy and wanted to make you happier." Of course! Makes perfect sense.
I even played volleyball tonight. I was tired by the third game, but at least I was out there. I didn't play hard, but it was nice to play regardless. Anyway, got to get to bed - more tomorrow!
Friday, April 16, 2010
Last Monday, at the hotel in Seattle, my friend and I were riding the elevator down to the lobby to eat breakfast. A young couple joined us in the elevator. I don't think they were married. He was in sweats - she was in jeans and a shirt. He looked relatively healthy. They were in their late 20s, certainly no more than their low-30s; to me, he looked about 25.
Anyway, she mentioned how his father seemed like he was in a bad mood. Then she said, "I don't know how you're going to pay all your medical bills."
He replied, "Don't worry about it. We'll figure it out [I presumed "we" meant his family]."
She said, "Are you going to file for bankruptcy? That way, you don't have to pay your medical bills."
He again replied, "It'll work out. Don't worry about the expenses." (or something like that - basically, I don't think he wanted to talk about it - maybe because he and she were in front of strangers and he didn't want to talk about finances in front of us)
She pressed on, "But if you file for Medicaid, then they will have to liquidate your retirement and savings accounts."
I can't remember what he replied. All I remember thinking was "Jeeez, what a choice! Filing for bankruptcy, on the one hand, or liquidating all one's savings, on the other, just because of a catastrophic illness!"
I don't know what kind of illness he had. But obviously, the bills were piling up.
I hope this health care bill, once its fully implemented, helps in cases like this. I mean, a person's already worried about their health and the prospect of treatment or dying or whatever. Who needs to worry about finances on top of it? Stress, in general, is a risk factor for cancer - and complicates the outcomes of many other diseases.
Thursday, April 15, 2010
I woke up Tuesday morning with more swelling in my lymph nodes in the left arm pit. They'd been painful for a couple of days. I decided to go back to taking Ibuprofen and after a day, the swelling went down to where it was last week.
My sleep had been interrupted with hot flashes, which I attributed to 1) rationing this one Chinese herb I was taking (Blue citrus); and 2) not eating an Anticancer diet. I went back to the normal dose - luckily I saw my acupuncturist yesterday - and have been doing fairly well with the diet: green tea, tofu, curry, veggies, and flaxseed on my cereal.
I had itching at the vaccination site for a couple of days - and the area was red until this morning. It's now almost normal.
I had fatigue on Tuesday and part of the day yesterday - I went to Bunco, though, with an old high school friend and some of her buddies. I won $5! (Well, I won $10, but I chipped $5 into the pot.) That was fun.
Today, I met with an incoming grad student and then we went to lunch with her and my Ph.D. student, and then had a meeting at the Longhouse. So, I didn't get any writing or research done . . . but building and maintaining relationships is a good thing.
This evening, I met with colleagues for a glass of red wine and visiting. That was fun! (Red wine is on the anticancer list!)
Tomorrow, I meet with my Ph.D. student again - then I have a parent-teacher conference with Eddie's teacher, then a faculty meeting, and then a committee meeting. I *hope* I can get some work done. I need to call an elder to schedule a time for an interview.
It was beautiful and 67 today - sunny - and that made it hard to think about working and more conducive to visiting. I had good energy today. I felt normal. The sunshine helped!
Thanks to everyone for being a friend!
Monday, April 12, 2010
Today, I had my second vaccination for the UW clinical trial. We started with a history and physical. I told Dr. C about all the little side effects that I got after last week's vaccine:
- the cold sore on my lip (Nurse D. says that this seems to happy to a lot of their patients)
- fatigue and how long it lasted
- flu-like symptoms in the 48-72 hour window (patients usually get this within 48 hours; I told him that I tend to take a little longer to react to things and this didn't surprise him); Thursday night I was tired and achey, so I had Tylenol, a hot bath, and some tea and it helped immensely
- fighting a cold/sore throat for the past few days (sore throat comes and goes, I think I get a sore throat when I'm tired)
- headaches (hard to know if it's a tension headache or from the vaccine)
No real reaction on my arm where the vaccine was given. No heart palpitations. Not much else going on. He just took a note of my symptoms and then I waited for the vaccine. We waited about an hour for the vaccine and then waited another hour after that. But it was fine. Amy and I colored mandalas and visited and joked with my neighbor/patient, S. (not the same person as last week). She was there with her parents and her aunt and they were a hoot. We laughed and joked and gave Dr. C a hard time. I told him the Onions and Christmas Trees joke - I think he was a little shocked. S. and her family played cards. Amy told Redneck jokes.
Amy and I went down to Pike Street Market afterwards - we ate lunch in this hole-in-the-wall kind of place - maybe Korean - and I ate a really good curry tofu with veggies. Then, we wandered around - I bought some salmon jerky and Amy really wanted to visit this bakery - we bought some delicious donuts there!
Then we headed home. We made it back to Hwy. 34 exit on I-5 in record time. Came home to some yummy spaghetti and my raspbery bismarck for dessert! Yay!
So, all-in-all a successful quick trip to Seattle. We'll see how I feel in the next couple of days. I may feel tired again . . . I head back next week. Have a great week!
Sunday, April 11, 2010
My friend, Amy, and I are here in Seattle. We drove up this morning from Corvallis. We stopped in Portland to have lunch with a friend and colleague and his baby girl and then we walked around Saturday Market for awhile. We enjoyed ourselves! It's kinda fun having this girl-time!
We got to Seattle about 6:30pm and ate dinner and have now been relaxing in our hotel room watching Glory Road and doing Facebook.
Time to get ready for bed now.
Tomorrow, I have a history and physical plus the second set of vaccination shots. It should go fairly quickly. Then we'll head south again - maybe we'll walk around UW's campus or something fun before we do that.
I'll post again after I get home! Happy Monday everyone!
Thursday, April 8, 2010
So, y'all know that I have swollen lymph nodes in my left armpit. It's hard for me to tell if they have grown or have shrunk or not. My doctor, yesterday, (yep I had an appointment with Dr. K) said that he can't really tell, either, so he measured the swollen area with a caliper. I think he measured it to be 7cm.
I've been using my right hand. It seems that a few weeks ago, I could cup the whole area with my hand - from finger tip to the heel of my wrist. Then after physical therapy and acupuncture, it seemed to shrink so that the whole swollen area is only from the tip to the base of my fingers. I haven't had as much tingling lately either or any numbness in the palm of my hand.
So, what have I been doing for it? Stretching exercises, physical therapy, acupuncture, and ibuprofen. I also practice qigong a few times a week.
Today, I had physical therapy. I think that it's made a difference in terms of loosening up scar tissue and giving me more range of motion in my right arm. L, my PT, also worked more on the area around the swelling. She stretched the tissue around there - almost like encouraging the lymph to flow around better.
I swear that makes a difference. It seems smaller this afternoon. It feels less firm and more fluid.
Yay! (But note "seems" - it's hard to really tell.)
Laurie, over at Not Just About Cancer, has been using lists the last couple of months to help her stay on track for several projects that she's doing.
I made a list in February and then forgot in March. So, I'm reposting my February list - and the progress I've made - and then posting my goals for April.
1. Interview 3 or 4 more Yup'ik/Inupiaq elders for the Alaska Statehood project.
Progress: I have interviewed two more Yup'ik elders for the Alaska Statehood project. I am having difficulty finding others to interview, particularly because I have to do them by telephone. I hope to get those completed this month.
2. Do research on breast cancer blogs - I'm trying to compile a list of the major complaints or problems breast cancer patients face which can be passed on to care providers.
Progress: I have been reading the blogs - but I haven't done the formal analysis yet. I just need a good amount of concentrated time.
3. Submit a workshop proposal for an indigenous project I'm working on with some other indigenous scholars.
Progress: The proposal hasn't been submitted yet, but it's finally moving forward again after being stalled - partly because so much has been going on with me.
4. Find and draft a grant proposal to buy me out of classes next year.
Progress: I didn't find a new grant program, because I found out that I received a Center for Humanities Fellowship at OSU, which buys me out of two courses next winter. I did submit a grant proposal to organize all the data and papers from the King Island Place Names Project. COMPLETED
5. Submit a conference proposal to bring students to the International Conference on Indigenous Place Names.
Progress: I've drafted a budget and wrote one page of a 15-page narrative. Yikes. Lots more to do.
6. Finish my mosaic.
Progress: The mosaic is finished and out in the back yard. I even glued the tiles on a brand new mosaic entitled "Riding the Waves". I hope that dad can help me put an edge on this one (which will be part of a bench on the deck) and then I can grout it and seal it. COMPLETED
7. Shred old financial documents.
Progress: Still sitting on my bedroom floor. I think I'll take them to the credit union tomorrow and ask them to do it! : ) Hey, my goal just said to "shred them" - not WHO needs to shred them.
8. Organize storage closet.
Progress: I asked dad to organize that closet because he was bored one day. Again, it just said to organize it, not WHO! ; 0 ) COMPLETED
9. Help Eddie create his Valentine's Day Box. I think we're shooting to make a Mario-kart look-alike.
Progress: COMPLETED. It was a fun project!
10. Meditate and practice qigong 4-5 times per week.
Progress: For the most part, I've been doing qigong 4-5 times a week. I haven't gone to meditation for awhile - the times just don't quite fit my schedule (right after Eddie's school one day and dinner time another day). COMPLETED
So, five of the 10 have been accomplished this month - with some help from my dad. Here's my list for April:
1. Complete two more interviews with Yup'ik elders or community members, with report written by June 1.
2. Cancer blog analysis, with report written by June 30.
3. Indigenous GIS proposal submitted (#3 above).
4. Conference proposal for International Conference on Indigenous Place Names (#5 above).
5. Apply for a one-week writing retreat on Mt. St. Helens - Due May 1.
6. Continue practicing qigong 4-5 times/week; meditate at least 2 times/week. Integrate stretching and strengthening exercises for my arms and shoulders for lymphedema every day.
7. Try to phase out more sugars and simple carbs from diet; increase the Omega-3s/anti-inflammatory foods.
8. Shred old documents and file receipts and bill statements.
9. Finish Riding the Waves mosaic.
10. Begin beadwork project for "Beading for a Cause".
Maybe this will be the kick in the butt I need to stay on track! : )
If Hooters started a door-to-door service would they then be called knockers?
Wednesday, April 7, 2010
I apologize for being MIA here on the blog. It was a busy couple of days up north in Seattle, then I have had fatigue again. I'm tired tonight although I had okay energy earlier in the day. In another post, I'll talk about our visit with friends and family, but here, I'll focus on the clinical trial.
So, I will write here about some of my impressions of the trial. I'll give you a general outline for my visit:
1) Informed Consent process with Q&A
2) History and physical
3) Blood Draw
4) Tetanus vaccine and Her-2 vaccine
5) Wait to see if I have any adverse reactions
I went to the UW Medical Center, where there is a floor dedicated just to clinical research. I met a couple of the nurses - who were great, BTW - and settled in to my room. Mom was with me. Dad took Eddie to Seattle Center. One of the physicians came into my room and we went over the Informed Consent Form. I asked several questions and he answered them. I was particularly interested in what they see the benefits of this trial are to breast cancer patients. The doctor, Dr. C., answered, "Well, you won't be cured of cancer." Then he explained (and this is a paraphrase) that patients on this clinical trial tend to become more sensitive to Herceptin and to chemotherapy - that the vaccine and subsequent t-cell infusions respond better to these treatments. I also asked him why one of the study questions was, "What is the maximum safe dose for t-cell infusions?" and he said that in ten years of doing these kinds of trials, they have not seen anyone have any bad reactions (such as an auto-immune disorder) arise from getting billions of their t-cells back. The reason why this is of concern is that the vaccine I'm getting is for Her-2 positive cells: all human cells express Her-2 (it's a growth factor) and some use it pretty heavily (like your heart), so they're concerned that if they train my t-cells to attack cells that overexpress Her-2 (like my cancer) using the vaccine and then clone my t-cells (make billions of them), there is the potential that the t-cells will also attack all my other normal cells since they have a bit of Her-2. However, as I said, after ten years of doing trials, they haven't seen any adverse reactions. So, I signed the consent forms and am now an official patient in a clinical trial for breast cancer.
He then asked me to report on my cancer history, so I went through the whole convoluted and complex history. There was a time or two when Dr. C was impatient and cut me off and asked me to elaborate on another matter. I didn't get mad - I've been doing what anthropologists call "participant observation" where I'm participating but also mentally standing back and observing interactions to see what happens. I wasn't surprised when this white male doc was impatient. I plan to address it the next time I see it, because after all, these patients are doing him a favor and it would be better if he listened patiently. He fiddled with his pen and once, I think I saw him roll his eyes. I also tried to explain my theory about the memory foam mattresses and how the one I bought a few years ago might have contributed to my cancer relapse. But he discounted it: "Well, it's unusual that mattresses cause cancer!" I beg to differ, but that's the subject of another post.
After he did a physical exam, the nurse tried to find a vein to do a blood draw - no luck on the first try, but another male nurse came in and found a good, but deep, one in my elbow. They took about a pint of blood. The male nurse, P., was very nice, and gentle. I hope I get him next time I need a blood draw.
Then, I got the tetanus vaccine in my left thigh - ouch, but it wasn't too bad. Then, the nurse, E., gave me the vaccine - in a series of three shots in my upper arm. I then had to hang around and wait for an hour to make sure I was okay. I was there about 4 1/2 hours, since I arrived somewhat early.
Some general thoughts I had as I waited throughout the visit:
- they need to redesign patient hospital rooms; when the bed is elevated, you can't reach the little shelf which is on the wall behind you which might have your drink or whatever. Hmmm . . . sorta thinking about an idea for research . ..
- while not mad, I was irritated with the doctor when he was impatient and when he didn't listen to my whole theory about the memory foam mattress
- I decided I was officially a human pin cushion - I had a total of six needle pokes that day
I was okay for awhile, as we drove home, but then I got pretty tired and fell asleep for a bit in the car. About five hours after the tetanus shot, my left thigh was achey. My fatigue stuck around through Tuesday - and may stick around for awhile longer. It'll take my body about 2 weeks to regenerate red blood cells after the blood draw. I felt a little more normal today - but started fading after Eddie and I got home from school.
I will leave you with this little news item from a Wikipedia article about cancer immunotherapy:
"In June 2008, it was announced that US doctors from the Clinical Research Division led by Cassian Yee at Fred Hutchinson Cancer Research Center in Seattle have for the first time successfully treated a skin cancer patient by using immune cells cloned from his own immune system which were then re-injected into him. The patient, who was suffering from advanced skin cancer, was free from tumours within eight weeks of being injected with billions of his own immune cells in the first case of its kind. Experts say that this case could be a landmark in the treatment of cancer in general. Larger trials are now under way."
I say, "Go vaccine! Go t-cells!"
Saturday, April 3, 2010
A quick update on the week's previous post: the grant was submitted on Thursday, on time. And, I felt relatively normal on Friday - not that bone tired, eye droopy fatigued.
I'm on my way north - we head to my Aunt Judy's tonight for dinner and then afterwards, Eddie and I will stay with an old high school buddy of mine, S. I worked for S's dad for almost three years (my next longest job, after my current job). We talked on the phone for 90 minutes - like the intervening 25 or 26 years hadn't happened! Wow.
But, if truth be told, I'm a little anxious, too. I reread the protocol and treatment plan for this clinical trial last night. One question was: What is the safe upper amount for t-cell infusions? So, they will grow millions of my t-cells (either the same as or similar to white blood cells) after they have been "primed" by the vaccine and give them back to me. In theory, since they are your own cells and they are geared specifically to attach the type of cancer cell I'm getting, I shouldn't have many side effects - in fact, none are listed. But does that mean they don't know (as that is one of the study questions) or that they are pretty sure nothing will happen (about 60 patients have had similar procedures done to them at this reseach group), but need to "prove" it on real patients? Also, they grow millions of my own cells using blood products from donated blood - so there's a very slight chance that I could get a virus or bacterial infection.
Although I was tired last night, I could get to sleep. But I kept telling myself to live in the moment, don't look too far ahead, just enjoy the day and the trip up north to Seattle. And, I reminded myself that I learned about this opportunity from my doctor in January - and he had just heard about it the week or two before, so he knew the contact person, I happened to fit the criteria and he felt that I would be a "perfect" patient for this since I was relatively healthy, and then things kinda fell into place - the travel dates, my taking leave from work, and the travel funds. So, it's meant to be. That "unmistakable touch of grace" that Cheryl Richardson talked about in her book: which is this idea that opportunities are placed in your path all the time, the trick is to learn how to recognize them and go for it because it will take you to good place you never would have considered before.
I fell asleep shortly thereafter. Okay, got to pack the car! ...
S, see ya soon! : )