10 out 15 WBR completed

I have only five more sessions of WBR left and then will take a couple of weeks to wean off the steroids. I am on a low dose of steroids so am eating mostly normally, with a couple of Zofran thrown in each day for nausea.

I didn't sleep as well last night, but toward the end. So still resting a lot during the day. I am glad Ed is with his dad although I miss him very much. He still gets to do fun things that I couldn't do. I take a Valium before bed. But the first couple of the hours in the morning, I do have some pain and stiffness in my shoulders.

I might be more energetic the week after next. We should see some improvement in the tumors in my arm by then, although I am not sure of the swelling.

Since I don't know what the future will bring I. The next couple of weeks, I am not worrying about it.

I have been blessed by the generosity of friends. I received a book by Pema Chadron yesterday called "When Things Fall Apart", from one of my oldest and dearest friends. Thank you, P! Also a colleague has started my Stockton, California trip fund with a $200 gift. Thank you, N! I don't even know if I will get into this trial or not, but every little bit helps.

Relearning Old Lessons

Acupuncture was good for me today. I let out a lot of emotion. B., my acupuncturist, said that I am feeling pain because my body is trying to catch my attention. My task is to figure out what the message is. One message, I think, is acceptance (of the limitations I now have from this disease) and to be okay with uncertainty.

You see, I had this expectation that I would have less swelling in my lymph nodes by 8 weeks post t-cell infusion because that is what happened to the guy who had advanced melanoma. His tumors disappeared by 8 weeks. My 8 weeks are up this Thursday and it's not happening. So I am frustrated because I want to go back to being "normal" with the ability to do all sorts of things like travel. In other words, I want to go back to being busy busy busy.

But the turtles in Hawaii were telling me to slow down. I keep forgetting to do that. Perhaps the pain is reminding me to slow down. To realize that while work is important, then rest of my life is important too and I need to nurture myself and my family just as much.

So B. told me that I should probably get rid of the expectation and let the universe do what it needs to do in its own time, not mine. And to not measure myself in terms of my colleague's output, but slow down. Get off the academic merry go round, so to speak, and just do things in my own time. To accept my limitations (I.e., not do as much as my colleagues) and to accept that maybe I should stop playing softball and be okay with that.

And, to accept that whatever is causing the pain is what it is. I don't need to know why, just realize that "it" is there and to be okay with not knowing. I need to go back to living in the moment. I need to write gratitude lists again. I also need to be okay with uncertainty.

In the end, I am projecting into the future again - thinking about the "what ifs?" and "why" but when you worry like that, you are not enjoying the time you have today. When you constantly wonder why, you forget about all that you are thankful for.

So, thank you for the reminder, B. And thanks for listening, R. And thanks to all my cousins and all the other people who took care of me in Alaska. A big thanks to my parents for taking care of me when I came home. I am sorry that I have been such a pill. Thanks to my son for reminding me what's important.

And, dad, I will try yet again to slow down! LOL

Dragonfly Eyes: Multiple Ways to Envision the Future

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:

Our Task
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,
Deanna

"You Look Great!"

Since this has happened to me, I wanted to share this link to a post entitled "Cancer made me beautiful" by Ann in Sacramento.

Several times a week, people say to me, "you look great!" or "You're looking good!". And, I thank them but I do wonder things like, "What? Do you expect me to be at death's door?" And, sometimes, "Well, maybe I look great but I'm tired as all-get-out. And, the swollen lymph nodes under my left armpit (or the lymphedema or healing fractured ribs on the right side) are painful."

It always surprises me because while I try to cultivate happiness by being mindful and aware of each moment, I'm not always happy (my family can attest to this). I worry about finances and I worry about whether or not I can do my job (expending energy teaching is a case in point).

I imagine it's hard for people to figure out exactly what to say to me - this was something my therapist and I talked about last week. There are times when I want people to treat me normally - and I expect myself to try to live life as "normally" as possible. I want to be normal. I don't want to admit that I have limitations to my activities because of cancer. That pisses me off.

On the other hand, I have to be realistic and so I have to communicate to my volleyball teammates that I don't think I can play at the moment - and I feel like I have to make a case to prove to them why I can't. I have to ask my chair to give me sick leave so that I won't have the weekly energy drain that teaching brings - and again, I have to "prove" that I'm "sick enough" or "tired enough" to justify taking the sick leave.

I imagine sometimes that my friends and colleagues don't know what to do because my asking for sick leave (or whatever) runs counter to the way I look and to the way I want to be treated because I want to be normal. So, then I get pissed because I don't think people believe me because I "look great" - if I "look great", I must be a charlatan to want sick leave. So, while I look and act normal most days, I really do need these special concessions and I don't want people to second-guess me.

To get back to Ann's post, she says that she likes it when people tell her she's beautiful. I guess I do, too. It means that my efforts to live life in the moment and to cultivate happiness are working. But I really do need to take some sick leave (not all the time, but after treatments) and take care of myself. I'm not sure that that helps people with the dilemma of how to interact with me . . . but maybe this helps people understand me more.

A Walk in the Sun and Living in the Moment

I played hookey this afternoon, by taking a nice long walk in the sunshine with Cat and her two kiddos, Finn and baby Jeremiah, aka Miss Finn and Baby Gooey, aka UGathluk and Aakagak. Finn is named after my Aunt Cecilia, who died of lung cancer in May 2006. Cecilia was married to my mom's brother, Uncle Ed. Baby Gooey is named after Uncle Gabe, another of my mom's brother, who died of pancreatic cancer in February 2006.

It was a fun walk - wide ranging conversations from more serious to kid-friendly. The sun was great, though. After I walked back to my office, I realized that it was one of those situations where you are living in the moment. I didn't hurry it. I didn't want to go back to my office and work. I just allowed myself to be present and to enjoy time with a friend and with the kiddos.

What a nice way to live. I wish we could all live that way more often, instead of living our lives by the clock. It reminded me of summer 2005, when we waited at camp at Woolley Lagoon to send community members to King Island. Just hang out, relax, and not be in a hurry. Remember that, Cat? That's heaven! Thanks, Cat, for the walk! It was a wonderful way to spend the afternoon!

A Message to S.

S. told me yesterday that I was focusing too much on the markers and thinking too much about the "what ifs" - such as "what if the numbers continue to go up, I will have to do IV chemo", etc. Worrying about the future, in other words. He reminded me that I needed to live in the moment again and to live life as if I'm immortal - which is what most people who do not have chronic illnesses do. They plan as if they will be alive for years and years. He had noted a change in my tone in my blogs over the past couple of weeks and said that I'd gotten off-track and told me that I needed to get back on-track and live for the day. In other words, an attitude adjustment is in order.

Just wanted to let him know this . . . mission accomplished! I feel better today and happier. The sun is shining and it's looking to be a great week-end! TGIF everyone!