We head to Seattle tomorrow morning, early. I'll pick my brother up at his house around 7am so I can get to my appointment at noon - and my CT scan is scheduled for 2pm. Then, Kevin and I will go to the Mariners game at 7pm. We got some seats behind the Mariners' dugout.
On Wednesday, I have a Cytoxan treatment.
Thursday is Hermination Day. Hasta la vista, baby!
Hopefully, on Wednesday, I'll feel well enough to do something. Not sure what.
We come home on Friday - I hope to be here in time to pick Spagedward up from school. Eddie's school carnival is that night and I hope to make it to that as well.
I'll miss Spagedward. But I have great hopes for this treatment . . . especially for Eddie's sake.
Monday, May 31, 2010
We head to Seattle tomorrow morning, early. I'll pick my brother up at his house around 7am so I can get to my appointment at noon - and my CT scan is scheduled for 2pm. Then, Kevin and I will go to the Mariners game at 7pm. We got some seats behind the Mariners' dugout.
Friday, May 28, 2010
I head to Seattle in a few days - yay! - and I think my brother, Kevin, is driving me up there. I'll be up there for three nights - and unfortunately, the American Cancer Society was not able to secure a hotel room for me, so I will have to pay out of pocket. Good thing that I received donations from a couple of friends, the Chaplain's Office, and the local Cancer Center (about $1350), and a gas card from the American Cancer Society. I think that I've spent about $550 so far for four trips and used all the money from the gas card. It would have been twice as much if I paid for the hotel room myself - the going rate at the hotel I was able to stay in was over $150/night and I received four nights from the American Cancer Society. I wanted to thank everyone who gave me donations - it's been very very helpful! It means that my own money could be used for every day things and even day trips to the coast, like we did on Sunday.
In other news, I did finish my mosaic and I finished repainting my bedroom in the colors that I prefer since I'm single now! I liked the seascape I created - I will try to post pictures when I get a chance. The blue sky was in a color called "Still Moment" (appropriate, since I'm trying to learn how to meditate) and my blue sea is in a color called "Healthy Waters" (also appropriate for obvious reasons). When I looked for something to paint the sand at the store, after trying out various ones, I picked a color that I thought was more tan (so I guess it wasn't really "sand" but more tannish hills in my seascape; when I think about my image, it comes closest to a place in Spain called La Herradura that Eddie and I visited five years ago). But when I brought it home and used it, it was more yellow. So, I ended up mixing the yellow with a "coffee bean" acrylic paint to make a tan and then added water to make a "wash" and then used that to paint my hills a tan color. When experimenting with paint strokes, I ended up with some splotchy clumps that I needed to fix. I ended up making them into clumps of grass.
All in all, I'm happy with it! I used a paint called "Fresh Aire" that has "No VOCs in the paint, no VOCs in the colorant and no chemical odor". However, after painting with it for several hours on Sunday, Monday, and Tuesday, and sleeping in my room, I ended up feeling really fatigued for a couple of days and yesterday, I was headachey. Part of my fatigue was staying up too late. But I think part of it was the effects of the paint fumes. So, today, a student (who just finished remodeling his house) let me borrow his respirator mask. I think it worked great! I don't feel nearly as yucky after finishing my room today.
So, six more days until I get my t-cells back. I am very curious to see what happens!
Tuesday, May 25, 2010
I saw my oncologist today. Overall, he more or less feels as I do that we have reached a status quo. We're in a wait and see mode to see what happens after "hermination". No other big news there. I did ask specifically about the CEA tumor marker number. He replied that that number is the least specific of all the tumor marker tests - and that it can measure other cells besides tumor cells. So, in terms of this tumor marker, Dr. K said that we could interpret the rise of this number from 22.9 to 28.9 as evidence that my body is now producing more t-cells.
Okay. I'll take that interpretation.
I haven't posted much these last few days. I've finished my mosaic - I put the sealant on it on Sunday. I'll post a picture when I remember to do so.
Then, I started repainting my bedroom. My dad and my brother painted it last year, but I never quite took to the color (a rosy color) - it was a compromise color with my former boyfriend.
I hadn't intended to do all four walls at once - I figured one wall a day, but it went fairly quickly, so I decided to do the whole room. I spent the last two days putting two coats of primer over it. Whew. A lot of work.
I picked out my new colors. I decided that I would pretend that my bed is a beach chair or beach chaise lounge. On two walls, it will look like sand on the bottom with a blue sky above it. And, on the other two walls, it will be a darker blue sea with the same blue sky. And, I might paint a sun in the southeast corner.
Now, we'll see if I can pull it off. I'll post pictures when finished!
Saturday, May 22, 2010
I head back to Seattle on June 1. My brother, Kevin, is going to drive me this time. I think we're planning to go to a Mariners game on the 1st. I may not feel up to it on the 2nd or the 3rd. I still haven't heard from the American Cancer Society about lodging - will give them a call today or Monday about that. My schedule for the visit is as follows:
June 1 - history/physical plus CT scan
June 2 - Cytoxan treatment (a conventional chemo - they say that they won't be giving me as big a dose as they would if I were undergoing treatment)
June 3 - Hermination (i.e., t-cell infusion)
Not much else going on - just work related things, like grant proposals, working on course assessments, etc. It feels good, though, one grant proposal is almost ready to be submitted through our Research Office and then it can go on to NSF.
Today, I want to finish grouting my mosaic so that I can seal it tomorrow. I also want to start repainting my bedroom - I'd painted it this kind of warm maroon color with gold sponging, but that was because my partner, at the time, liked that color scheme. I like cooler colors, so I think I'm going to repaint it in a series of blues . . . and might even paint a kind of seascape in there . . . I also want to declutter my areas. I may go into my office and declutter my desks and email. My problem is that I have so many projects going - both at home and at work - and many of the projects are waiting on stuff from other people so I can't finish them and put them away. So, I keep them out until such time as I get back what I need from the other folks. But that can take months and months and months . .. and months. : )
So, who knows what I'll do. But that's the plan and I'm sticking to it. hee hee hee
Wednesday, May 19, 2010
This morning, I got to thinking about "hermination", the word I used for "terminating" the cancer cells, using my super duper Herminator-2 cells.
It occurred to me that while hermination rhymes with termination, it also rhymes with "germination" and again, it seems a perfect term for me to use.
Hermination represents the TERMINATION of the cancer and the GERMINATION of a life in which my immune system is able to kill the cancer cells.
How cool is that? : )
Also, I got most of the pieces for a grant proposal uploaded today. We've been working on pieces of this for months, so we're glad that there's some forward movement. A good day!
Monday, May 17, 2010
I posted this picture of my feet on facebook - and it elicited more comments than usual! So, I thought I'd share it with you. So, without further ado, my "Z-feet":
I have to agree!
On Thursday evening, I went to the cabin at Shotpouch Creek for an interesting discussion with an author named Jack Nisbet, who's written several books about various explorers here in the Northwest. The most recent book was The Collector and that was what we talked about over a dinner and a glass of wine. It was an interesting conversation - and I was able to talk some about the colonial predilection to collecting artifacts and how some indigenous peoples have had to fight to get their artifacts returned to them. Anyway, it was an interesting conversation and I met more interesting people.
Then, I had another Herceptin treatment on Friday. I was able to go to work afterwards - feeling somewhat tired, but not dog-tired-fatigue. I went to our department faculty meeting - we were discussing our policies with regard to our Ph.D. program. My legs felt slightly shaky (not a lot) afterwards, but not as bad as before. I think this means that my body is getting used to Herceptin - and I think Joanna from Colorado might say that I don't have as many cancer cells floating around. I hope she's right!
I went to the Drag Show with dad on Friday night. When I went a couple of years ago, they had some of the professional drag queens from Portland and Eugene perform first. They weren't able to perform this year, so it was just students. However, some of the students were great! I was pretty tired, though, and my butt and hips were sore from sitting in those uncomfortable chairs. Also, my lower back was achey, which was a result of my kidneys trying to process the Herceptin.
On Saturday, after getting to sleep in some, I ended up putzing around the house and running errands around town. I also worked on my mosaic - grouting around the tiles. I am using a grout that I can color different colors. I worked on it a couple of hours on Saturday, then we went to the OSU Pow Wow. We had a free meal there - salmon, wild rice, salad, yams, and huckleberry cobbler. Yum! After a few hours, I took mom, dad, and Eddie home and then went back to the Pow Wow to keep my colleagues and friends company. Not many people showed up . . .
Then, on Sunday, after sleeping in again, dad and I went to Home Depot to exchange some items for the side storage shed we're building. Then I worked on the mosaic, ran errands, took a walk with Eddie, and then, since it was so nice, Eddie played on his slip /n slide. My softball team had its first game of the season - I didn't play very well at all and my right shoulder is very tight still so throwing was difficult. It was fun though - a couple who played with us beginning 19 years ago and who have played in maybe 6 or 7 years decided to get back on the team. That was fun! We won 15-14 with no help from me. Then off to a local pizza place and a beer.
So, it was a great week-end. Luckily, I had energy and had fun with friends and colleagues. I'm glad that Herceptin isn't giving me the really bad fatigue anymore. It's nice to function somewhat normally!
I had a physical therapy appointment this morning - good thing as my right shoulder was feeling tight from softball. My therapist is loosening some adhesions and I think it really helps.
Anyway, life is good. Just waiting to get my Herminator-2 cells back. The countdown to "hermination" of the cancer cells is 17 days.
Wednesday, May 12, 2010
I got back home yesterday, after Visit #4 to the UW for the immunotherapy trial. Visit #4, as you might recall, was the visit where I had leukapheresis, which is a process to remove my white blood cells (AKA t-cells), or as I now call them, my Herminator-2 cells.
I was a little anxious about this as they decided that I would have to have a catheter inserted so they could remove the cells. I think I described what they planned in an earlier post - it involved going to radiology, so they could use an ultrasound and an x-ray to make sure the catheter was threaded okay down my jugular vein. To do this, they planned to use sedatives.
Anyway, I got to the hospital about 7:15am (was up too late the night before and didn't sleep well -anxiety) - and P., this wonderful nurse, drew my blood. P. does a great job as I can barely feed his needle sticks; this stick was on the top of my left elbow. Then, a little before 8am, I went down to radiology and the receptionist wanted my insurance info. I didn't want to give them to her because I didn't want me or the insurance to have to pay for this procedure - this was to be paid for by the study. So, I had her call the nurse upstairs to clarify it.
Apparently, they got it worked out and I was escorted back to one of the "bays" where a nurse named Walter started to prep me for the catheter insertion - he put in an IV line into my left hand. But then the doctor came in to explain the procedure and then they started saying that after the insertion, I would be taken to another floor where I would be under two hours of observation - because I was being given a narcotic and they didn't want me to crash. So, I had to explain that the clinical trial doctors told me that after I got the catheter, I was to go back upstairs for leukapheresis and not wait beforehand.
Walter talked to his charge nurse (or his supervisor) and they called upstairs yet again and worked it out. They compromised on waiting for about 30 minutes after the catheter insertion to make sure that my vital signs were fine.
So, off I went to the procedure room, where I was introduced to Ryan, Brian, and Joe (I kept thinking "Winkin', Blinkin', and Nod"), nurses and radiology techs who were helping with the procedure, in addition to the radiologist, Dr. P., and an intern.
By this time, I was a little nervous. They prepped my neck on the right side by painting this blue stuff on me (not betadyne - they don't use it any longer) that killed microbes on contact. Then, a shot of lidocaine. I laid on the table facing to the left. I was pretty tense and anxious, so much that my legs were shaking. Then, Walter gave me Zofran (an anti-nausea med), then the sedatives, Versed and Fentanyl. I didn't really want to have the sedatives - I tend to get nauseous with narcotics - but I didn't fight it. When I got the sedatives, I immediately relaxed and my legs stopped shaking.. It was enough to take the edge off.
I felt some pressure here and there when they inserted the catheter. The catheter went from my neck, into the jugular vein, and down to the top of my heart. Mostly I amused myself by watching my vital signs on the monitor. I could see my respiration rate - and if I started breathing too fast, I'd take some deep breaths and see that rate go down to about 13. My blood pressure was about 117/65 to 120/70.
Here are some pics from the day. Below is me resting in my room upstairs, hooked up to the machine that was processing my blood. You can see the catheter on the right side of my neck with tubes full of blood. One tube took the blood away and the other one returned my blood minus the Herminator-2 cells. The entire volume of my blood cycled through the machine over two times.
Me and my "double-lumen intrajugular catheter":
Here's a close-up - I think I might still be feeling some of the effects of the sedatives! What do you think? This was taken after they finished leukapheresis and before one of the doctors from the clinical trial removed the catheter:
And, an even closer close-up - if I didn't know any better, it looks like I'm turning into a Borg:
And, finally, my Herminator-2 cells. I posted this pic on my Facebook page and said "My Herminator-2 cells - go forth and multiply!" P., the nurse who drew my blood, monitored the leukapheresis project from beginning to end. What a nice guy!
Don't they look beautiful, those Herminator-2 cells? I think so. I think they're gonna go after those pesky cancer cells . . .
I wasn't discharged from hospital until about 3pm. My sister and I then drove to our new hotel room - a converted university dorm. The lady was nice, but I was hungry and wanted caffeine. I wasn't allowed to eat prior to the catheter insertion. P. let me snack a little bit, but I didn't have a full meal until about 4pm. I was feeling woozy. But we walked to dinner, and I began feeling more human after I ate. Then it was off to the UW bookstore - my sister wanted to find gifts for her in-laws in the Netherlands. I found a few things, including this wonderful bar of peppermint dark chocolate:
My sis and I had fun in Portland on Sunday - on our way to Seattle. We had lunch with a friend and colleague and his little family. It was a gorgeous day. Then we went to the Hawthorne District and did some looking around. On Monday evening, after the UW bookstore, we went back to the room and watched a movie. I got a decent night's sleep and then we took off for home about 9/9:30am. I got home in time to pick up Spagedward from school. I had a lazy night last night and tonight looks about the same. I'm yawning as I type this. Whew!
For now, no more visits until June. Yay! Now to concentrate on work projects . . .
Saturday, May 8, 2010
I cried a few times during the week-end. It happened, usually, when discussing my cancer status.
Since then,I have been thinking about the reasons why I cried. Some of my colleagues thought that perhaps I was crying because I'm grieving. They decided that I was the one to express the grief they all felt about our environmental problems - I was the designated mourner for the week-end.
Certainly, the tears bubbled up because it is frightening for me to look into the future (because of my metastatic cancer status) and yet, that was one reason why I was there: to help envision a future. And, as I explained in an earlier Dragonfly Eyes post, I try to live in the present and not worry about the future. By living in the present, I am more able to sense a future of possibilities.
However, I also think that the tears bubbled up because of nerves: I am innately shy. I also struggle with my own feelings of not-belonging. So, here I was with a group of folks, most of whom I don't know and most of whom are more well-known for their scientific or artistic work, trying to explain tothem how my discipline envisions the future. I think, too, that I was brought in because I am a member of an indigenous community. (I also know, though, that the organizers like my interdisciplinary perspective: my undergraduate degree is in Science Communications - with upper division courses in science and writing - and then I went into anthropology and have several years experience working on committees at the NSF.)
Frankly, I was intimidated by this group and when I'm intimidated, I get nervous and cry. There's a part of me that doesn't believe I belong in such a group as was gathered last week-end.
At any rate, grieving was one of the themes that came out of this week-end. We discussed Elisabeth Kubler-Ross's five stages of grief, which are denial, anger, bargaining, depression, and acceptance. I've read, too, that a person who is grieving doesn't necessarily experience these stages in the same order. They may come about at different times. I think that several of my colleagues are within the anger/depression stages of grief for our environment and our world.
I'm going to bring another strand into my discussion: that of indigenous histories. Recently, I likened colonial/imperial invasions into indigenous territories as an invasion of cancer. So, cancer in individuals is like colonization of indigenous peoples is like climate change and environmental degradation in our world (which I suggested in an earlier post).
How does one heal from cancer? How do indigenous peoples heal from colonization? How do we heal our world of environmental degradation?
Perhaps the lessons I have learned as a "cancer treatee" can be applied here.
For over two years, I have seen an acupuncturist trained in traditional Chinese medicine. What I like the most from seeing the acupuncturist is that traditional Chinese medicine is holistic: she asks me about my physical symptoms, my emotional state, my level of stress, and my diet. It's also taught me to see my body in terms of energetic pathways and systems and reinforced the idea that we are all interconnected.
I also see my conventional western oncologist, a therapist, and a physical therapist regularly. I am participating in an immunotherapy trial at the University of Washington. I practice qigong. I've been reading book after book related to mind/body medicine. I color mandalas and create mosaics. I am changing my diet. I try to get some kind of exercise in each day. I am learning to meditate. I try to live in the moment. I draw upon my support network, which, I am grateful to say, is a large one.
In other words, I am in the process of healing myself using a variety of approaches from western medicine, Chinese medicine, some readings on spirituality and healing traditions from the Arctic, Buddhism, and Chinese medicine. I've read a small amount in ayurvedic medicine, too. (That's the joy of being an anthropologist: I can "study" all of these different medical systems for my own health and I can somehow make it count at work, too!) I tap not just into science, but art and spirit.
I promise my discussion is going somewhere, so bear with me.
To get back to grieving, when I googled "kubler ross grief", one of the top two websites included the link I gave above. The other top website was by changingmind.org. This grief cycle expanded upon what Kubler Ross's five stages to include shock and testing. But what I found most interesting is that this site notes that people often get stuck in one phase or another. They are resisting or avoiding change by not moving on to the testing (seeking reasonable solutions) and acceptance phases.
So, how have I, as a cancer "treatee", moved past the anger and depression stages of my metastatic breast cancer status?
One thing suggested by my acupuncturist and my therapist about two years ago (and interestingly, I think I had just read some article in Time Magazine related to "happiness" research) was to create gratitude lists. Gratitude lists help you focus on the positive and they help you feel connected to other people. As I mentioned in an earlier Dragonfly Eyes post, I don't believe that cancer can survive in a happy and hopeful body. So, I regularly give thanks to whoever or whatever circumstance warrants it. I have separate "Labels" on my blog, for instance, that are "thanks", "thank yous" and "thank you". I have a total of 75 posts in these categories. (That's kinda cool - but it makes me think I should have more!)
So, I wake up every morning - and even if I'm in a bad mood sometimes - I try to remember to think about what I'm thankful for. Walking from my son's school to my office helps, especially this time of year, because I get to see things start to bloom: first the crocuses, then the daffodils, then the tulips, now the rhododendrons (amazing on campus right now), my lilacs are in full bloom, my irises are budding as are my roses. I am thankful for the very long springs we have here in the Willamette Valley.
Try it with me: what are you thankful for?
I am thankful for lazy Saturday mornings - so I don't have to rush around!
I am thankful for my healthy, inquiring, son.
I am thankful for my family's support and love.
I am thankful to the King Islander community for their continued support, both for my cancer treatments and for our shared work.
I am thankful for my friends who continue to support me through my cancer treatments.
I am thankful for my friends and others who have given me travel funds so that I can participate in this immunotherapy trial at the UW.
I am thankful for my job, which gives me the flexibility to do my treatments, study what interests me, take care of my son, and keep learning.
I am thankful for my colleagues who also continue to support me in a myriad of ways.
I am thankful for my students who often teach me as much (if not more) than I teach them.
I am thankful for sun and blue skies, especially today.
I am thankful for the foresight of Oregonian leaders in the past, who passed legislation to keep much of Oregon's coastline free from development.
I am thankful for the Andrews Experimental Forest - and other tracts of old growth.
I am thankful, too, for tracts of new growth forest.
I am thankful to NSF, which is willing to support interdisciplinary work.
I am thankful for my healers, both from non-western and western medicine.
I am thankful for the opportunity to talk about "big ideas" with my colleagues.
I don't know about you, but I know that being grateful makes me feel better and happier. I woke up in a good mood already, but this list has just made me happier to be alive.
Gratitude lists have helped me move past the anger and depression and into the testing and acceptance phases. I think it is in these phases that I can move forward to healing myself.
I read several other blogs, including those with metastatic breast cancer. A couple of them are not doing so well and several others are doing okay. From what I am observing is that those who are doing well are those who have not stayed stuck in the anger/depression phase. Those who are stuck seem to be doing worse health-wise - or who have worse side effects from treatment. Those that are doing well have thankful lists.
I think these stages of grief can be applied to colonialism and indigenous peoples: I fear that many Native Americans here in the Lower 48 are stuck in the anger and depression stages. I think in order for our communities to heal, we need to make gratitude lists and figure out ways to move forward. The explanation given in the website above - that being stuck in one stage represents a fight against or a denial of change - helps me to understand what's going on in many of our communities. The trick is to accept that change has occurred and enter into the testing stage, where we can seek realistic solutions. I think our communities should draw upon a wide variety of approaches, including those of western colonial society, to heal ourselves. We should not limit ourselves, but explore the possibilities of what might work in different situations. We need to draw on our own histories and cultures - learn what other groups are doing - and expand our understandings using a variety of perspectives and experiences. For instance, my cousins and I and other relatives are now "friends" on Facebook. We're using modern technology to stay in touch even though we are thousands of miles apart.
I think that these same lessons can be applied to what we are trying to do in the Dragonfly Eyes effort. Recognize where we may be stuck in certain phases and then employ gratitude lists. We need to draw upon a variety of approaches and use a variety of lenses to envision our future, including those of indigenous peoples.
Thank you, again, for allowing me to bring the lessons I've learned from cancer into our discussion.
Thursday, May 6, 2010
I saw my physical therapist yesterday. I still have cording from the swollen lymph nodes under my left arm pit. It's about the same. The pain is still there, especially when I try to stretch my arm. In fact, my physical therapist noted that it's getting a bit harder to straighten my left elbow all the way. I can feel a stretched tendon? or nerve? going all the way up the inside of my arm to the wrist.
I have, however, gained some range of motion on the tight right shoulder - I've gained about 5 degrees, but there's still some more to go.
She spent most of the time stretching my arms and shoulders - to try to increase lymph drainage on the left armpit, and to release fascia that's scarred from surgery and radiation on the right side. It always feel good when she does that. Then we did some exercises - I'm starting to do some exercises for my core strength - and I need to get better about exercises to increase the strength of the muscles in my rotator cuff.
On the one hand, having additional appointments is a pain. On the other hand (or should I say shoulder? LOL), seeing the therapist and starting exercises for arm/shoulder/rotator cuff/core strengthening feels like the right thing to do - like I'm doing something positive for myself, which increases my quality of life. And, that's a good thing.
Yesterday, the nurse from the UW clinical trial called to ask me to show up at 7:15am so they can draw blood for lab tests, instead of 8am.
Then, this afternoon, I talked to the nurse at Radiology, who gave me some instructions to follow prior to the insertion of the catheter. I can't eat anything 6 hours prior to the procedure - so nothing after 2am. I can't drink anything except clear fluids - and maybe nothing for two hours prior to the procedure. Yikes!
They need to use a catheter to withdraw my Herminator-2 cells. They will be using a "double-lumen" catheter, which will allow blood to be removed from one tube, where it will go through a machine where they separate out the white, t-cells (AKA Herminator-2 cells), and then they will return my red blood cells and platelets through the other tube. This is a process called "leukapheresis". The insertion of the catheter for this purpose may take as little time as 30 minutes and maybe up to 90 minutes.
Then, leukapheresis may take 2-4 hours.
Then, they remove my catheter. After removal of the catheter, I will need to go to a hospital room for four hours to make sure that I am not bleeding any longer through the hole created from the catheter.
I thought that I would be able to go home almost immediately after leukapheresis. I guess not.
So, after about eight phone calls, we (my sis and I) will be staying another night in Seattle. Luckily, my sis was available. Then to try to get the hotel we have for another night, but I couldn't get a free (complimentary) room through the American Cancer Society because I didn't give them five days notice. I originally thought we would just stay in the same hotel that we will stay in on Sunday the 9th (the Watertown), but the room rate was $139 and when I called one of the discounted places that the ACS knows of, I opted to stay at the Collegean, two blocks from the original hotel, for a price of $71 (including tax). The manager, Sherry, was very nice and friendly. I guess the Collegean is operated through the UW Medical Center and is used primarily for patient visits. They even allow stays of a month or more.
I was tired after that. But I still managed to give comments to NSF's next Strategic Plan.
My parents and I are listening to my son play Mario Party 7. He has a running commentary about the action he and the other characters are doing. It's funny! And, cute. Have a great evening!
I really don't have any news to share. Which is a good thing. It just means that I'm living my life, going to work (where I'm getting caught up on a variety of tasks), taking Eddie to and picking him up from school, hanging out with his class on a fieldtrip (in the rain and hail!), hanging out with friends, enjoying life. You know, all the mundane daily life sorts of things.
It's a nice place to be.
Nothing profound to say. There's a couple more ideas from Dragonfly Eyes but I haven't really taken those ideas from the back burner into my consciousness, so they are still there percolating. I'm scheming for ways to find more time for writing. I'm getting an urge to write more. To finally dig into some of the research that I and the King Island place names crew created.
So, it's a good thing. It's a good life. And, it's sunny today, for which I'm thankful!
Monday, May 3, 2010
I didn't get any more entries for the t-cell naming contest. The three entries were:
Herminator-2 by Heather Kenagy
H2Life - by Alex Cyrus
T-cell Choppers - by Rena Seunninga
I have chosen the winner - Herminator-2! Thank you, Heather! I will be in touch with you after I create the mandala, but it might be a few weeks, okay?
Postscript: Heather's husband, after I named the winner on Facebook, posted a comment: "I'll be back!"
Herminator-2 is more perfect than I realized! The Herminator-2 cells will be taken from me next Monday, where the lab will clone them until they have millions (maybe billions) and then they will give them back to me. Wow! Isn't that great! Too too funny! A perfect name! So, the Herminator-2 cells "will be back!" : )
The conference organizers asked us how we, as a representative of our discipline, envision the future.
I found the question hard to answer. I don't know that my discipline necessarily envisions the future. In addition, since my work is so tied to who I am, I had to answer the question from my position as a cancer patient.
[An aside: there is a lot of debate among cancer patients about what to ourselves: are we survivors? That implies that we are through with treatment and have survived. I'm getting to the point where I dislike the image of being at war. But, what if we are currently undergoing treatment? Then we are technically cancer patients, but a lot of us don't like the image of "patient" because it implies a weakness and we don't feel weak most of the time. I thought that maybe we could call ourselves "cancer treatees" - as the recipients of treatments from those who treat us. I also like to think of myself more as healing from the cancer. What do you call someone in the process of healing? A healee? Now I'm just getting silly, but I'm throwing it out there in the interest of finding a new term for those of us healing from cancer - I don't like to call myself a survivor (for that invokes a war-like image) and I don't like to call myself a patient. I sorta like cancer "treatee" because it's a play on the word "treaty", which means making peace - a first step toward healing.]
As a cancer "treatee", I am learning to live in the present. As explained in an earlier post, I don't really like to worry too much about the future, because worrying doesn't get me anywhere; but I like to think of a future full of possibilities. It requires action on my part; as one of our organizers (K) said a couple of times, we need to cocreate the future and that will involve careful deliberations about how to make that come about. As a cancer "treatee", I am trying to recreate and envision a future that doesn't involve cancer. I am making small incremental changes and I often don't blog about it, but I am continually changing how I am as a person.
I was struck, this past week-end, by the prevailing idea of linear time that permeates our culture and society. Our philosophers introduced the idea of practical syllogism (apologies to my philosopher friends and colleagues who may not like the wiki link, but it was quick way to explain it). I first want to note that it is useful for certain purposes about how to encourage action. I agree with others that it will help us to see things more clearly about what our path might be.
But I tried to explain that the logical and linear arrangement of statements is based upon a western ontological and epistemological outlook that sees time as linear.
As an example, one metaphor that we used in trying to "map" what our task is was the metaphor of dragonfly eyes - with its many facets and perspectives coming together to present a particular vision to the dragonfly. We made a kind of map that shows our network of interconnections to each other - circles representing different disciplines with lines and arrows showing the connections. One network represented the past and another such network represented the future. One of our colleagues, M., saw the two networks as "eyes" with an "optic nerve" running between them. We live in the present - on the optic nerve - ever moving from the past to the future, represented as the line of the optic nerve. As the past changes behind us (because of our actions in the present causing the networks to move about), the future also changes.
M likened the idea of always looking into our rearview (i.e., our past) as we drive into the future (a highway, also linear). In other words, we need to remember our past - the lessons we learn, ideas about how to restore past landscapes, etc. - in order to move forward into the future. It reminded me of Julie Cruikshank's book "Life Lived Like a Story", which details the life stories of three Tagish/Tlingit elder women. One woman, Angela Sidney, said, "I have tried to live my life right, just like the story". In other words, she is living in the present, in the now, using the model of a traditional story from the past. So, M's use of the rearview mirror as a way to envision the future works for me.
Alternatively, instead of seeing time as linear, indigenous peoples see time as circular. The National Museum of the American Indian has posted 13 audio recordings of Native American people talking about their communities' concepts of time. I haven't had a chance to listen to all the interviews (criminy, the tyranny of time) but two of them, by Kathy Sanchez and Jerome Kills Small, talk about the importance of living in the present. When several people asked me how indigenous people envisioned the future, I couldn't answer them because I had never read anything that talked about their conceptions of "future", other than the idea that time is circular and that there's an idea that, for Native Americans, they continually revisit things that happened in the past. In other words, think about our seasons: fall, winter, spring, summer. They expect that this cycle will continually repeat itself. I've heard that some people liken Native American conceptions of time as a spiral - that as we approach the same segment of the circle that we refer to as winter, we expect that we will be reliving the winter that we experienced before. We understand that there will be some changes (hence the symbol of a spiral - each level of the spiral is slightly different than the levels on either side of it). But time is circular.
M's rearview mirror uses the idea of traveling along a road - with the past behind us and the future in front of us - which is linear. But what if we choose to think about future time as continually revisiting our past; it's not quite the same past, but there are enough similarities to recognize that we've been here before and there are differences and new possibilities. Change is inevitable. But revisiting our past allows us to anchor ourselves in the world. It reminds us of who we are so that we can go to the next level.
Maybe this is a metaphor that we can use for envisioning the future.
As for the practical syllogism, I'm going to ask Renee's help to see how looking at this western way of "practical reasoning", which seems linear to me, might be conceptualized from an indigenous standpoint that might not necessarily be linear . . . hmmm, I'm not making sense. I guess what I'm getting at is whether these "practical syllogisms" exist within an indigenous ontological and epistemological worldview. Oh, Renee?? Are you there? Can you help me out here? Thanks, girlfriend!
Ideas continued to percolate through the night - which was kinda cool on the one hand, but I didn't sleep much on the other. So, before I lose the thoughts, I thought I would try to write them down.
One of the conversations that I had with K and G had to do with something the Forest Service is doing to encourage young stands, with the goal of increasing biodiversity. What they are finding is that while the Northwest Forest Plan is actually working and creating more old growth forest, it has had a side effect of decreasing the biodiversity of the forest, since there has been a decrease in the young "seral" forest that allows for huckleberries (something treasured and picked by Native Americans - and in the Cascades, by the Warm Springs tribes), white oak, young Douglas fir saplings, and I can't remember what else.
The conversation had to do with intentionally taking life - as in selectively cutting down the taller, older trees in order to allow the growth of young stands. They asked me if it bothered me that the USFS is doing that and I replied that actually, it didn't. I understood the science behind it. If you think about it, Nature has its way (through fire, wind storms, landslides, etc.) of taking down old stands of trees and allowing the young seral forest to grow. (I don't know this for sure, but maybe the difference between man-made cutting and Natural disturbances is that Nature made these patches of openness smaller and less regular, not a nice, square patch that western science might make).
I gave the example of northern hunters and how they take the life of what some people in the Lower 48 call "charismatic megafauna" (seals, polar bears, walrus, etc.) in order to feed their people. I mentioned how in the Inuit worldview, those animals gave themselves to the hunters that were deemed worthy (I didn't get a chance to explain what constituted "worthiness"). G replied, "well, that gets them off the hook for taking life, now, doesn't it?" I said, "No it doesn't. What happens is that now the hunters are obligated to do certain ritual actions in order to return the animal's spirit to their world so that that animal can continue on its cycle of life and death. The hunters have to take care of what they hunted."
It got me thinking, this morning, about past landscapes. Do we mourn the dinosaurs? They died in order to make room for what we see today. I think we need to be careful about trying to keep things in stasis. I don't think this gives us free reign to destroy the natural world - we do need to take steps to protect it. But I don't think the USFS is wrong in trying to create stands of young seral forest either - both the young and the old forest gives us a chance for change and growth. Sometimes, the old (like the dinosaurs) needs to make room for the new.
In theory, in the case of climate change, wouldn't we rather have both old stands and young stands in order to increase the chances of the forest surviving? It's a matter of hedging our bets.
One thing that is constant is change. We do have a responsibility to keep what's left of our old growth forests. But allowing new growth that might be more adapted to a warming climate is also good.
Sunday, May 2, 2010
So, I just returned from my week-end at the HJ Andrews Experimental Forest, where I participated in a brainstorming session with a multidisciplinary group of people. We had so many ideas - it was really thought provoking.
Also, in order to put my comment about the forest into context, I want to note that the forest doesn't tend to sooth my soul - it doesn't touch my deepest spirit - in the same way as the ocean - that was something I said to a few people this week-end.
Anyway, this is the email that I just wrote to the organizers and felt that I wanted to share them with you:
Dear K and C,
My mind is kinda racing - I'm feeling rejuvenated so I think the forest affected me more than I acknowledged while I was there. Ideas are percolating. I'm not sure what to do with the energy. So, I think that I might send you the poem I created yesterday, with A's [A is a poet] directions. I'm not sure how well my metaphors are working . . .
I was struck by A's observation that the moss was writing a story on the tree. That's the starting point for this poem:
Moss is writing its story on the tree
Like the Willamette River in the past
Sending tendrils to different places
Creating patterns of swirls and squiggles
It is not a violent invasion
It is a peaceful negotiation
To coexist together on the land
We must send our tendrils into the world
[editorial note: We only had about 15 minutes to write it, so it's probably not as well developed as I might wish.]
I think I'm going to write a blogpost about the week-end . . . that might help me get these ideas out of my head so I can sleep tonight.
Also, K, on my way home, I got to thinking about J's and D's pessimistic vision of the future, especially J's "hope vortex". I likened her sense of a doomsday future to my cancer situation. There was (and sometimes are) times when I feel a sense of despair and loss because of my metastatic cancer - despair that I might die of this disease and the sense of loss of a normal life. I could easily stay in that place. But by practicing living in the moment, I have more or less moved past that despair and by being aware of what is going on right now - paying attention to the blooming rhododendrons or irises or how the waves sound at the ocean or the rain trickling through the leaves last night - I sense this future full of possibilities.
I believe that cancer can't live for long in a happy and hopeful body. It needs pessimism and despair and anger to continue to grow. I want to change the "terrain" of my body (to borrow a phrase from the book Anticancer: A New Way of Life) to make it inhabitable to cancer.
If I may use the analogy of cancer, we might say that the cancer that is infecting our environment (the coral reefs, climate change, etc.) is more able to thrive in an environment of despair and hopelessness. Our task is to change the "terrain" of the global discourse - we need to create a context in which these cancerous growths can no longer exist.
I don't know how we will get there. But that's what we will discover as we move along this path.
A final note: they say that as a cancer patient is undergoing treatment, it takes just as long to recover from the treatment as the length of treatment the patient received. So, if they received three months of chemo and three months of radiation, then healing from the effects of those treatments will take six months.
Environmental degradation has been years in the making. I suspect that the fixes may take as long. As a global society, we need to be willing to invest that time.
I felt compelled to share these ideas with you . . . you can share them with the rest of the Dragonfly Eyes group if you wish. At the very least, I think that these observations can be made part of the record of this week-end.
Still percolating with ideas,