Hi, this is Dee for Dee's updates. I apologize I haven't been posting very much and it's because it's become far too frustrating. My hands are shaking too much, especially with the touch pad on the keyboard ipad, I keep hitting backspace. I will type a letter or two then have to backspace. It's taking me about ten times longer to do something than it usually does. So my grad student and friend (actually she's not my grad student but she has worked for me almost since she got here, maybe even 3 years ago), Rebecka, is going to type these up for me. She's a Ph.D. student in our anthropology program and she's under my employee doing some work on my native corporation project. This is something else the department said would be fine for her to do for me. That just made me feel grateful to my department that they would do that. So this is going to launch the first experiment that we're going to do, where Rebecka's going to type up my words and post them to my blog. So tomorrow sometime this blog post should be posted and hopefully you will get, maybe if not daily, every other day updates. It's made me very pleased that she's able to, or even wanting to do this for me.
So the Gemzar treatment went fine, but I don't know if it's working . I never did get any nausea from it, it's just made me really tired. I've been sleeping a lot and my mouth is really dry. I don't have an appetite so I'm really not eating much. I'm having fruit smoothie's, gatorade, water, and sometimes applesauce. But that's about all. I've been trying to eat like chicken broth and stuff like that, but I'll smell it and it will turn my stomach. Like today I had some spaghetti noodles but the first batch was a little too dry. The second patch dad put a little sauce on it and it almost made me throw up. So I guess at this point, the wound care nurse (who comes by my house to change my dressing), had told my dad a couple of days ago that if I wasn't eating more I would probably just fad away.
So after some conversations with my son's therapist and my therapist, and my colleagues, I got to thinking about stuff that I felt like I had energy to do and I realized I don't have much. So I started parceling out things that people could do for my work. So I think my book project is going to get jump-started again. I might not do much work, but maybe I could dictate an intro and conclusion but it won't be up to snuff or my usual, what I think is my usual best. Rebecka is going to write my blogger analysis. I'm going to throw in some stuff here and there, like I've already written the intro so she can type that up. I told her she can put in the meat of it and the conclusion maybe we'll write together. I've got a friend, Brenda, who's assessing where I'm at with the book project and we'll see who might want to pick up pieces of it to try to revise. And all my former students, gotta love 'em, Brenda, who now shares my office is kind of taking charge of the book project; Rebecka who's been working for me is doing the case studies for the native corporation project; Kat and Kai and Kim are probably going to work on pieces of the book, Kim wants to write on the songs part of the Songs of King Island. I just need to see if I could add in some folklore. We'll see what I can do though. Then I have a friend that I need to get a hold of, Aurthur Mason, who thought that me writing a cancer book could be something. I wasn't sure if he'd be wanting to do it, but he did mention there was a lot of good stuff in the blog. So maybe he could come up with some sort of organizational scheme for it and do that for me. And I know you're reading this Aurthur so since I'm not email you maybe you'll get this message.
Like I said, I do think I'm fading a little bit and my hope is more that I fall asleep sometime and not wake up. I don't want to go through a lot of pain before I pass. Here I can't even say it but I've got to say it, before I die. I've got to say I might die. I hope I won't die soon, but my son knows that there's a possibility that I will and he's sad but I think he's learning to accept it. And my whole family's sad but everybody's accepting it. I told them it's not that I'm not fighting, it's just that I don't think my body's going to keep up the energy needed for the treatments and so I'm just going to- I wanna say lay down and rest, that might just be what it is.
Sorry this is a rambling post and usually I have it organized. That's the joy of writing, you can edit yourself and bring yourself back to different things. Anyway that's kind of where I'm at. I saw the attorney today and I'll get a final copy of the will next week. I have to fill out another form about personal property, things like my car and expensive jewelry, not that I have much.
I guess that's about it. So now that I have a friend who will type this up and post this for me, I hope you'll stay in touch with me and how I'm doing. I might even be able to get to post's beyond what I'm doing, in terms of treatment. So to catch people up, right now I'm on a two week on, two week off schedule, and next week I get the whole shoo-bang: I get Gemzar, Herceptin, and Zometa. And then I'll have two weeks off and then I'll just get Gemzar and Herceptin. I don't know how it's working, like I said it doesn't make me nauseous. All I know is I am tired, I'll wake up in the middle of the night and I'm disoriented and just dead tired, and my mouth is dry. It's been hard for me to swallow pills, but if I make sure my mouth is nice and moist beforehand, then I can get them down. So thanks for listening.
6 comments:
I am so glad to hear from you, but I am so sad that you are struggling. I will keep reading your blog and I will keep hoping that the Gemzar kicks the cancer in the butt.
I love that you have found a way to keep up the communication. That seems important somehow, and we're still listening. A book would be amazing and wonderful, just like this blog is.
yeah. I feel the same way as Joanna and Kiwi Monster... and I'm glad they wrote comments to yours, because there's something about communication -- these digitized black squiggles-- that reaffirms that we're all 'still listening' and speaking.
Aw, Dee. I think I might have told you that my mom just got diagnosed with pancreatic cancer. It was confirmed on Friday. Anyway, my mom was a hospice nurse. She brought us up to see death and dying as part of life. And I get that. But it is still hard to imagine saying goodbye. To Mom, to you. I know, it is not now, not yet. Maybe not for awhile. But I want for you what I want for Mom: that you feel ready and that you're not afraid and not in pain. And that you know how very special you are and the mark you've made in my life. Damn, Dee. I am sorry this is so hard. And so grateful to you at the same time. It's "gravint." x o
It's good to hear your strong voice again, even if it is through the hands of a friend. Whatever it takes, it takes, and that's just the way it is. Rallying the troops puts you back in charge of a lot of things; that will keep the cobwebs off your projects until you can get back to them, or it will ensure your many legacies. Either way, you win and there are a lot of grateful people out there for it.
Thinking about you so often. Sending hugs and love.
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