Saturday, October 29, 2011

Pomo Indian Medicine Basket

I'm writing this late at night on Friday. I woke up after a long nap and I'm wide awake for once. I had a fairly good day today. Started out a little nauseous, so I'm still taking the anti-nausea pills. I think it was the Zofran that was making me sick, so I'm taking the Phenergan and Dilaudid and I'm keeping it to just those two medications plus a stool softener. So I'm feeling fairly well.

We were fairly busy today. We had hospice stop by for a couple of hours. And then while they were here I had another friend and colleague, Margaret, stop by with a Pomo Indian medicine basket. They're tiny little baskets that will hold the illness and will empty it. When she gave it to me, I just burst out in tears cause I know the significance of those baskets and it really touched me. So thank you Margaret, I really appreciate it.

After Margaret left, home health care stopped by and taught the hospice nurse how to change my dressing. It's convoluted and hopefully it will go quicker with someone having seen it once. But then I spent the afternoon resting and watching a movie with my brother Kevin. We watched Bridesmaids. I thought it was going to be funnier, especially with funny scenes from Vegas, but it was cute. Then I slept; slept and drank some Jamba Juice.

I'm hoping you all have a good day. I'm hoping I will have a good one tomorrow and actually get some organizational stuff done. Not only writing for the book, but I also have a lot of stuff laying around my room that needs to be picked up and put away. 

Love you all!

Visits and Appointments

Today is Friday, and it was a pretty good day although it was really busy.

Turns out I triple booked myself and I totally forgot about it. I told two people they could come over, and mom and dad also booked hospice. So our priority was hospice. One friend totally understood and just dropped off a Jamba Juice and said she'd come back later. Thank you Shannon, I appreciate it. My other friend was Margaret. She dropped off a medicine basket for me, and they have a lot of healing and medical significance to them. It made me cry, I hadn't seen Margaret in so long. It was so nice to get that gift from her, I really appreciated it. She's such a sweet person. She'll be one of the people I will miss at OSU.

Later, my brother brought over movies. He brought Bridesmaids, so I watched that with him. Then I promptly fell asleep for a couple of hours. I was pretty tired by then.

On Saturday, I think I have a couple of appointments. The hospice nurse will come at 10:00am and learn how to change my wound dressing. It seems I have something else going on, but I can't remember what it is. At any rate, instead of being so tired I need to start working on some stuff. Yesterday I had the nausea; I haven't had it today but I sure have been tired. 

No other news. I hope you're all well. Love you!

Friday, October 28, 2011

Hope Tomorrow's a Better Day

Good Morning. 

Yesterday was sort of a bad day; I woke up throwing up and I couldn't keep food down the rest of the day. I'm feeling a little better right now and my stomach doesn't ache. But I'm trying to figure out which medication I should take for the nausea, to get my stomach settled down again. Then I could put my head back into work or other fun stuff I wanna do. I sure hate feeling nausea. I threw up again last night, so like I said, I'm still trying to get my nausea back under control. But I feel a lot better than I did a few hours ago, so that's why I'm posting.

In the meantime, I think my son and his cousins and friends are going to go to Wacky Bounce this weekend, and they might wear Halloween costumes.

I'm just amazed at how often my mood goes along with how I'm feeling. And now that I physically feel better, I emotionally feel better. Hopefully the physical side will continue to improve, cause I've got stuff to do. I've got the books to write and other things that I need to take care of. I hope tomorrow's a better day.

Wednesday, October 26, 2011

No More Chemo

This may be a bit of a surprise for all of you, but I've decided to discontinue with chemotherapy. I've spent the entire time since my last chemotherapy feeling nauseous, and I've thrown up several times. I've decided I just don't want to spend my time that way, with lack of appetite. I've lost 15 lbs in three weeks. I've decided that's not the kind of life I want to end with. It's a hard decision because I wanted to do everything possible to fight to be around for Eddie as long as I could. But apparently that's not in the cards. 

When I woke up this morning, after having talked with Dr. Kenyan yesterday, I felt perkier and happier (but a little sad of course). But I felt better about my physical self and I felt a little bit stronger. When I asked Dr. Kenyan what he would advise, he said if you were my wife I would tell you to discontinue with treatment because the chemotherapy will buy you, at most, two weeks to four months. Whereas if I went off the chemotherapy I will have two weeks to two months maybe, but those are just guesses. I'm expecting that I may be able to do more. I would like to be around until after Christmas, to be here for Eddie.

Please don't say anything to Eddie just yet. I want to talk with him but won't get a chance until later this weekend. I want to talk to him and spend some time with him so that he can understand the situation. I really think it's the best situation for all of us. And even though Eddie won't have me around much longer, he'll have a more energetic mom around. That's what I want. Someone who has a little more strength, a little more energy, and a little more ump to them. All I've really been doing is sleeping and resting.

I had to go the hospital again the day before yesterday. I had been so nauseous that I lost a lot of fluid and they gave me a different anti-nausea pill and saline solution. Now that I've talked to Dr. Kenyan and made the decision to stop chemo, I feel a lot better.

I appreciate all of you out there who have given me support, wishing me long life. I wish I was, and maybe I will. I'm never going to say never. I'm not giving up; I guess it's just time to lay down, or rather just let things go. So thank you very much and I'll be around. Take care!

Monday, October 24, 2011

Another Trip to the ER

Good Morning or Evening , whenever you happen to read this. I just wanted to say that the furnace is working again, which is nice. 

My appetite hasn't picked up yet. My sister and the doctors convinced me to go up to the ER, so now I have another ER visit that I have to pay for out of pocket. But in the end they gave me a different anti-nausea pill and said you can feel nauseous like that after you've had enemas. I see Dr. Kay on Tuesday, but I'm not quite sure what I'm going to say. I have half a mind to skip my treatment this Friday. I just don't know if I can handle the Gemzar and more nausea. I really need to get my appetite back, so I don't know what I'm going to do.

Hope you're all having a good evening, and I'll talk to you soon. 

Saturday, October 22, 2011

Feeling Under the Weather

I realize I haven't posted in a couple of days and I apologize. I've been a little under the weather the past couple of days. I was okay yesterday (Friday) during the day, and I had a lot of visitors. I also had two enemas that didn't quite work so the nurse had to do it manually. Finally I had a bowel movement, and later that evening I had two more bowel movements. About an hour after that, maybe 8pm, I took a drink of something which made me really nauseous. I didn't throw up but I was in the bathroom for 10 minutes standing over the toilet waiting to get sick.

Today, I slept a lot this morning and my stomach still feels tight and sore. I know I said I wanted visitors, but not when I feel like this. I don't even feel like making phone calls. So thank you Rebecka for understanding (we were supposed to meet on Friday but we put it off till next week). And another friend was supposed to come over today and pick up some stuff. I also asked her not to come over because I don't quite have the energy.

Tomorrow my friend Beth is going to interview me, so I hope I feel better by then. After that (around 3pm) I'll be talking to my ex-husband about the will and I'm a little apprehensive about that.

Other than that, my mom's birthday was yesterday- so you could wish her a happy birthday. HAPPY BIRTHDAY MOM! 

Hope everyone takes care and I hope to see you soon.

Thursday, October 20, 2011

Furnace on the fritz

Our exciting news is that as of Tuesday we learned that our furnace is on the fritz. Apparently because we weren't cleaning the filter the fuze box didn't get properly cleaned and we blew a fuze. Then that caused the whole control panel to blow a fuze. The repair technician was really surprised we were getting any heat at all out of the furnace. So now we're going to have about a $1500 furnace repair bill coming up here in the next week. Hopefully it will pay for itself over the next couple of years in better performance and lower heating cost.

Well that's our exciting news. Hope you're doing well. Love you all!

Wednesday, October 19, 2011

Would Love to Have More Visitors!

This morning was a very lazy morning, which was good because I was very tired. So I slept a lot and rested a lot. This afternoon was busier; I had wound care and my counselor stopped by. 

It's also been a somewhat frustrating afternoon. We just found out we have a $1400 repair bill to fix the furnace. Turns out we burnt out the ignition switch and the control panel. It could have happened anytime during the past year, which explains why it hasn't been working properly. I'm glad the maintenance man went over it thoroughly and found these problems.  Hopefully we'll get them fixed over the next couple of days. I think that's why it's so important to keep a reserve of savings around, exactly for things like this.

I should get the will this week. I am exploring additional options with my attorney. I can't share exactly what at this point, because I don't know if I'll go that route, but we'll see. In the meantime I admitted to my counselor that I was a little bored and not sure what to do. We determined it would be really nice if I had a visit once a day from a friend cause that seems to lift my mood and get my mind away from things. I didn't have one today or yesterday, and I hate to admit it but it's affected my mood a little bit. I WOULD LOVE TO HAVE MORE VISITORS. In the meantime I guess I'm going to start writing on my book again. 

Hope you're doing well and have a good Wednesday!


Tuesday, October 18, 2011

A Somewhat Busy Monday

Hi everyone. I almost forgot to post today so you may not actually get this until Tues morning. I hope you're all doing okay. I had kind of a busy day. I had a lazy morning sleeping a lot, but then I had a sponge bath and that felt heavenly. The lady was really nice, too. Got to hand it to people who do that kind of work; I don't take them for granted at all. Her name was Maureen. If you see fit, please keep her in your prayers. Then I saw the wound care nurse and she changed my dressing and that was nice.

My will is almost done, they just need to send me a couple more forms to fill out. I also might look into some other options to secure a bit more money for Eddie down the road that he could use for his enjoyment.

My colleagues came over last night, Joan and David. We visited for awhile and I told them about my two book projects and how they were progressing. A big thank you to Aurthur for our good conversation (the cancer book), and to Brenda too for letting me know what was going on with the King Island book. Seems there are still pieces I need to read/work on.

I got a couple of bills in the mail and I didn't think I deserved them. They're coming from insurance so I guess I have to call and find out why they're not paying those. The total is about $300, which is a pain. It sucks being a cancer patient- having to deal with insurance, bills and money.

I guess that's about it for me, haven't really done much else- looked out my windows and slept a lot. 

I hope you're having a good day. Love you all. Bye!

Saturday, October 15, 2011

Losing weight has me worried

I'm going to be talking to my friend Aurthur soon; he is going to help me organize the cancer book. In the meantime, I'm just resting and sleeping a lot. I had the Herceptin, Gemzar, and Zomeda treatment yesterday. So far so good! I don't seem to be having any nausea, etc., although I've been religiously taking my anti-nausea meds. 

I did, however, lose 10 lbs over the past two weeks, and that has me worried that my body is just going to fade away. But I talked to my nurse, who then talked to the doctor, and we're going to see how this next Gemzar treatment affects me. If it seems to be fighting the cancer, the doctor's going to go ahead and let me do a TPV (a total parental nutrition IV drip). I think I will have to sit in the hospital for a day and get a bag of nutrients- so that  I don't fade away to nothing, and will also have strength to take on the next treatment. I'll let you know how that goes.

In the meantime, my girlfriend Brenda stopped by this morning and told me the status of my book. Rebecka stopped by yesterday with an update on the status of her various work projects. I've also had a visit from Irene, and I have to make a phone call for another grad student that I wasn't able to get to on Friday. 

I think that's about all I have to say. Just waiting to see how the treatments go and not wanting to lose any more weight. I'm going to try to triple the amount of Jamba Juice I take in so that I am drinking 3 a day, plus 2 applesauces, and maybe 2 servings of watermelon. Hopefully I will be able to at least maintain my weight. I really can't stand the smell of anything else, it just makes me sick. That's just the way it is: I don't have an appetite.

Friday, October 14, 2011

Brief update

Hello everyone, I hope you're having a good day. I had two home health care visits today. My colleague Mark, and his friend Sherry, stopped by to visit for awhile. I hadn't seen him since before he left on summer travels to the Bahama's and such. It was nice to see them. 

Friday I have wound care and my treatment. I think the treatment is working, but we're not for sure. I just hope they can find a vein so I can get my next treatment. That's about it. About that time that you're reading this, I will be in the fusion center receiving my next treatment. 

Love you all and will talk to you soon.

Thursday, October 13, 2011

An Eventful Day

Today was sort of an eventful day- we used the wheelchair and we figured out which walker I might want. I had my wound care appointment and then I went to Eddie's therapy appointment. That was a bit much for me. I was able to do it but I was cold the whole time. In fact, I'm a little cold now so this will be a short post so that I can lay down and rest.

What else is new? Well, I got a little bit of money back from insurance, actually from the people who made my sleeve. They estimated the insurance would pay so much, but I guess the insurance paid more and they gave me a refund, which was kind of nice. I have most of my bills paid for the month, which is also nice. I didn't actually do it, my brother did. So thank you Scottie for doing that for me. 

Other than that everybody seems to be doing okay. Sometime in the next week or so I might start thinking about things to write, but I will talk with my student about it on Friday and see what happens. So that's what's up in my neck of the woods. Hope you're all doing well. Bye!

Tuesday, October 11, 2011

Tuesday Update

Hello everyone, I hope you're doing well today. I didn't post yesterday and I apologize. My student gets backed up so she can only post when she's able. So if she's a little late posting, that's why- she's a student and has other obligations as well. So thank you again Rebecka for posting for me.

Other than seeing the wound care nurse and people coming to visit, I haven't really been doing much. The attorney's came yesterday and the will is close to being done. There's a couple of questions I have to ask one of the attorney's when she's back in the office next week.

Geez, I can't seem to remember who came to visit me yesterday. Today Karen and Susan dropped off a meal from the university. My parents enjoyed it. Nancy just got back from Tajikistan and she stopped in to visit. My therapist also came by today, which was very nice of her. Tomorrow soup will be delivered again from Kai, through a service that she found. I think N.O.T. (?) is coming by with something for us to look at. On Friday I think Kim was going to drop off her reports and also maybe stop in for a visit.

I have been eating watermelon, so that's a new addition to the diet. That's about it but I don't feel like I've lost weight. I do have what I think is good news- my left arm is looking less swollen. It's draining a lot, so there is a lot of dressing on my arm. Still, I can see a spot that a couple of weeks ago was really red and had a couple of spots that looked like they wanted to ooze, but now it's dried up. I'm hoping that means the chemo is working. I'll go in for treatment again this Friday and just see how it affects me. 

I was really lazy this morning and didn't do much. When I found out my earliest appointment wasn't until 1pm, I was very thankful that I could lay around and rest until then. I think my first appointment tomorrow is at 11am and I'm a little disappointed. But maybe that means I'll get myself up and moving around sooner. People think I am stronger, generally speaking, and I guess I do too, which is a good thing. I am going to take Eddie to his therapy appt, so we'll get our first spin in the wheelchair. That's about it. Life's kind of boring when you're an invalid and not out doing things. 

I hope you're having a good evening and Love To You All!

Just Another Day

For Sun Oct 9th.
What did I do today? Not much. I slept at the beginning of the day, then the wound care nurse came at about 1:30 and we visited until about 2:30. My whole entire immediate family was also here. Rena and Hank and their kids, and Kevin. Rena, Hank, and the kids came in and visited with me for awhile which was really sweet of them. I think Ken and Connor are uncomfortable with the situation, but they hung out for awhile anyway. 

My sister also helped me with my personal property list for the will, specifically who to give things to. I discovered I don't really have that many valuable things. So in a couple of respects I just gave things away, even jewelry that was expensive. I'm not wearing it anymore so I gave it to people I thought might want it and might actually use it.

Other than that I haven't really done much. Just trying to drink my Jamba Juice, water, and Gatorade. I did feel like I had a bit more energy, even if I haven't been drinking or eating that much. There are also a couple of places where you can see the cancer on my skin, and it looks like it's either drying up or receding. It could be wishful thinking- but you can think wishfully for me as well.

Another big "THANK YOU" goes out to Phil who is doing a prayer session for me tomorrow. Thank you so much.

I hope you all have a good day.

Sunday, October 9, 2011

A "Thank You" Day

So many of you have noticed by now that Rebecka posted the first blog post for me yesterday. I could see how many typos I had in my talking, but I guess it sounds more like I'm talking to you than when I type up my blog post. At any rate, my days are pretty much full of resting, having some water, Gatorade, applesauce and fruit smoothies. 

My sister, bless her heart, went to Kohles and got me some more t-shirts that can fit over the sleeve on my arm; it's so fat! Because of the dressing that's on it, it's quite large. She got me some extra-large t-shirts so that my arm can fit through. It also fits over my head a lot easier when I put it on, but I still need the nurse's help to put my shirts on. My sister also got me a new pair of yoga pants, but I'm thinking I actually need to get a couple more pairs. Right now I'm living in them because they seem to be the most comfortable. 

Today what I want to do is a "THANK YOU" day. People have been so kind. I just received a get well card from the administrative assistant for our unit, Loretta, and also one from Nicole. A lot of other cards have come in but I don't have them in front of me. Kai has been sending soup through the soup cycle company once a week for the past couple of weeks. I guess she's kept that up as a service for awhile and that surprised me. Kim gave us a $25 Jamba Juice gift certificate, and somebody else gave us a $50 Jamba Juice gift certificate. I want to say it was Kai, but I'm not sure. Kat has been bringing smoothies whenever she comes by to visit. Everyone knows now what kind I like. Angelo came over with his wife Pattie, and they brought over banana bread and some really beautiful flowers. Joan, when she and her husband returned from the State of Georgia in Russia, brought me a traditional Georgia hat which is really quite fun. I've gotten lots of compliments on it already. People bring over flowers, fruit, things to eat, and other things. 

The bottom line is there is such a long list of thank you's including patrons at Zion who are taking care of my part of the tuition for Eddie this year. I have a wheelchair now and the Kiwanis Club has installed some more bars to make it for me to use the bathroom because I get so shaky. My family has been great, my sister sorted through my clothes and got a bunch of stuff ready for Goodwill, they fish around for papers for me, and printed out documents for me when I couldn't do it. 

In general, there are so many thank you's it seems like I have a long list. You know it's just people stopping by with friendship and understanding. If it's possible I would like you to extend that understanding to Eddie. Maybe he's having a good day and not even thinking about me, and that's good. He needs to be unfettered by worries like that. But if you do happen to see him cry when you walk by just give him a hug. Let him know he's loved, and that you're one of my friends. I hadn't meant to cry during this post, but I guess everybody cries and it's okay to cry.

I guess I'll sign off for now. Just know that I'm doing okay, my pain is under control, and I am eating when I feel like eating, and resting a lot.  I LOVE YOU ALL.

Saturday, October 8, 2011

Catching up (with a new way to post)

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.

Sunday, October 2, 2011

Doing fine and okay

The infusion of gemzar was fine. No nausea, which is what I was afraid of. Tired and I guess that next week I will ne tireder, but I am doing fine and okay. Thank you everyone for your love and support. Let's hope It does the trick.