A Message from Deanna's Family

As some of you may already know, we lost Deanna Kingston last Friday to breast cancer.  She was an extraordinary women full of love, compassion for others and a brilliant mind.  Her friends and family wish to pass along a few words about her life. Please feel free to share this others. Her memory lives on in all of us.

Deanna Marie Paniataaq Kingston
July 21, 1964-Dec. 2, 2011

OSU Professor of anthropology, Dr. Deanna Kingston, 47, of Corvallis followed her ancestors on December 2, 2011.  Deanna, descendent of the King Island Native Community, was born, raised, and resided in Oregon.  She is survived by her supportive and loving family, son Edward Tattayuna Kingston, parents Olga Muktoyuk Kingston and Dalena SpiritSong Kingston, Sister Rena Seunninga, brother-in-law Henk Seunninga; niece Kenna and nephew Connor Ryan Seunninga, brothers Kevin and A. Scott Kingston and numerous family in Nome, Anchorage, Fairbanks and the greater Alaska region.

Deanna often commented that she felt she was born an anthropologist.  Her love for peoples, cultures, stories and legends carried her to many parts of the world but always brought her home. Dr. Kingston received her BS in Science Communications from the University of Portland in 1986, an MAIS in Cultural Anthropology from Oregon State University in 1993 and her PhD in Anthropology from the University of Alaska Fairbanks in 1999.  In 2000, Dr. Kingston began her journey as a professor of anthropology at Oregon State University. An unfailing supporter of students of color, she worked tirelessly with Native students, advising and co-advising many native graduate students over her 10 plus years at Oregon State University.  Working as an advisor for the Native American Longhouse, she supported Native students and faculty alike at OSU, and served as one of the finest role models of a colleague, friend, mentor, and scholar.

Deanna had many great accomplishments through her work, her son and family, and her open candor during her long battle with cancer.  She served on the National Science Foundation’s Office of Polar Programs Advisory Committee and also on the SEARCH (Study for Environmental Arctic Change) Responding to Climate Change Panel. Dr. Kingston participated in numerous workshops and conferences including “Designing an Arctic Observing Network” in Copenhagen, Denmark, an international conference on indigenous knowledge at Pennsylvania State University and a workshop at the International Arctic Social Science Association meeting, sponsored in part by the Alaska Native Science Commission, on collaborating with Arctic communities. She was cognizant of efforts both in the circumpolar Arctic and in the Pacific Northwest to consult, respect, and collaborate with Native American/indigenous communities, particularly when it comes to their knowledge of the environment.  Deanna’s inspirational thoughts and ideas will be kept alive in the numerous articles and publications she wrote and in the legacy of the students she advised.  Her unerring commitment to the betterment of others and her community were demonstrated in her participation in a myriad of organizations such as the International Arctic Social Science Association, Alaska Anthropology Association, the Arctic Institute of North America and the Planning Committee for the International Conference on Indigenous Placenames, Guovdageiadnu, Norway, September 2010.

In 2003 she received a National Science Foundation grant to document and compare scientific knowledge with traditional ecological knowledge of King Island, Alaska.  Thanks to her work through this grant, many King Island peoples were able to return to King Island and share their knowledge and wisdom with the younger King Islanders.  This work culminated in one of her proudest accomplishments, the King Island Placenames Project interactive website that documents the cultural geography, biogeography and traditional ecological knowledge of King Island (http://www.kingislandplacename.com/).

Devoted to furthering numerous causes and helping others along their paths, Deanna kept a long-running, open, intimate diary of her journey with cancer (deeupdates.blogspot.com) that was a source of inspiration and healing for her, her friends and families, and countless others living with or affected by the disease. Despite the often heavy topics of her blog posts, Deanna strove to find the humor and insight in every situation and communicate both to others. Her courageous and kind spirit will forever be missed and remembered.

About her next voyage, Deanna wrote on her blog, "don't be sad, be happy for my passing ‘cause I'm going on a wonderful journey. I'm not sure where, but if you miss me, just think about me and I'll be there- wrapping you with my spirit, keeping you comfortable, wishing you well."

A public remembrance, honoring and celebration of Deanna’s life is being planned at Oregon State University’s Native American Longhouse. A private family ceremony will be held at a later date.

In lieu of flowers, please send donations to the Deanna Kingston Memorial at the OSU Federal Credit Union, PO Box 306 Corvallis, OR 97339-0306

Memorial Fund

A few notes from Deanna Kingston's family.

Kim Nelson has set up a memorial fund to help the family with impending costs. Donations can be made to Deanna Kingston Memorial Account, OSU Federal Credit Union, PO Box 306, Corvallis, OR 97339-0306.

The family is working on setting up a "Memorial Service" for Deanna at the OSU Native American Longhouse sometime in January. Please check back later for more information.

Deanna's family will also be hosting "A Celebration of Life" for Deanna next summer. This event will most likely be held at the coast where the family intends to go out on a boat and spread Deanna's ashes in the ocean. Deanna chose to be cremated with some of her ashes spread along the Oregon coast and some sent to Nome to be spread at King Island by King Islanders.

In Loving Memory

Deanna Kingston passed away this morning, December 2, 2011 at 7:30. We send her on her journey in light and love. She will be missed by many. 

Rebecka Daye

Still Alive

Hello. I'm still alive, though I'm really weak. I can't get up on my own. It's so bad that I have to wear diapers because I can't even get to the bedside commode. My family was here for Thanksgiving, but I slept too much. I'm going to sign off because my voice is weak. I love you all.

(note: My apologies but this is all of Deanna's message that I was able to decipher. There was a little more, not much, but her voice is very faint.)

This Might Be My Last Post

Hello. I'm not sure if this is going to be my last posting or not. If I feel well enough later in the week, I'll post again. In the meantime I'm feeling much weaker today. I can barely make it to my bathroom without trembling. My legs are very, very weak. 

I don't know how much I have left in me, maybe another week. But don't be sad, be happy for my passing cause I'm going on a wonderful journey. I'm not sure where, but if you miss me just think about me and I'll be there- wrapping you with my spirit, keeping you comfortable, wishing you well.

You've all been great people to me, especially lately with all the gifts- gifts of money and time, meals for me and my family, and flowers. I really appreciate all the Jamba Juice certificates.  

I hope you all are doing well.

Please Understand

Just a quick note. I didn't mean to be so harsh in my last blog. When I went back to read it it sounded harsher than I intended. But I would appreciate no more visitors because I'm just getting so tired. I hope you all understand. Talk to you later.

No More Visitors, Please

So I guess the cat's out-of-bag. I'm at that stage where I only want family around me and no visitors. I feel like I've said good-bye to my colleagues and to my work.  Whatever needs to get done will get done, and I don't need to worry about it.  So I would appreciate it if you would respect my wishes and not visit anymore. It's just been too hard between my dry throat and the thrush, and I'm feeling a lot weaker. I need help getting up from my bed and I need the walker. I just feel too weak to have visitors. Thank you for understanding.

Eating Watermelon

Hello. Today is Monday. Sorry I didn't post anything yesterday.  No nausea so far today. I've been eating a lot of watermelon and I think I'm going to get constipated, but I'll worry about that later.

Thank you all for paying attention to the number of visits. Today Chris is coming to visit me, then I have wound care and sponge bath. So I keep busy, regardless of whether or not I receive visitors. Tomorrow Brenda and Leah are coming, so I would appreciate it if nobody else came on Tuesday. It takes a lot of energy to have visitors, and my voice doesn't hold out. Cat is also bring by food.

But yey! no throwing up, no dry heaves, no nausea. I even had a little Ativan to go to bed, cause it helps to calm me down. Other than that my thrush and dry mouth are doing okay. I wish I could eat more, but at least I'm eating something.

Mary told a nice story in one of the comments about a woman named Catharine of Sienna who was almost anorexic, and stayed alive for years on just water. It just made me think, where did she get her strength? I mean I don't have any strength. Then it makes me wonder about anorexics and bulimics. You know they're so skinny, where do they get their strength. Just random thoughts.

Anyway, hope you're all doing well. Talk to you soon.

Watching Harry Potter

I've been watching Harry Potter all day. I also managed to get down some more watermelon. I did have some dry heaves this morning, but that was because my legs and arms were shaking with anxiety like I had a couple of weeks ago in the hospital. So my dad gave me a little bit of Ativan under the tongue and I ended up dry heaving that. But the shakes went away so hopefully I won't need any Ativan tonight. I also figured out that I haven't been shaking my legs and feet as much as I had been. So I'm gonna do more of that so hopefully I won't get the shakes again tonight.

I continue to be awed by colleagues who are sending notes and cash, and I just want to give a big thank you to them. I really appreciate it. I got another check in the mail today for Eddie. I could use it for his tuition, but I think I might set it aside for his Christmas use. 

Not much is new. I hope you all are well. I guess I'm doing okay, but I still have the thrush. I appreciate those of you who agreed to wait to visit until the thrush is gone. Thank you.

Happy Veterans Day

Hello. Happy Veterans Day for all you out there today.

I have been reluctant to have visitors due to the thrush in my mouth, how hard it is for me to talk, and how dry my mouth gets after just saying a few words. So I guess for the next week or so if you could keep your visits to a minimum I would appreciate it. It's just too hard on me and hard on my voice.

But I am better. I finally ate some watermelon today for the first time in about a week and a half. Yesterday I asked the wound care nurse if she had heard stories of how long women had lasted only drinking water and other fluids. She said the longest they have on record is 70 days, or about 10 weeks. I guess I don't have to worry about that because I had watermelon today.

The physical therapist stopped by today and she is going to put in a raised toilet seat for me. I hate to say it but it is getting difficult for me to stand up from sitting on the toilet. Other than that, the mattress is feeling wonderful. Not much else is happening. 

I hope you all had a good day and I will talk to you tomorrow.

Stories about me

Hello. I haven't posted in a couple of days and I apologize for that. I am feeling a little bit better though. My nausea is better, but I have been having some dry heaves early in the morning. I'm not sure what from, but they don't last long. It does make me afraid to eat anything solid, because I am heaving the fluid that I am drinking.

Other than that, I didn't post yesterday because my tailbone was sore. But now I have a wonderful mattress pad that alternates air every so often. I can barely feel it but it's nice. I also had wound care and a sponge bath today.

Anna at NSF gathered together stories about me from my colleagues: individual letters that they each wrote. Two other colleagues of mine, Joan and David, dropped them off. It was really touching to receive, though I haven't yet read through all of them. There's 30 or more stories to read, and a bunch of pictures at the back. I'll go through it slowly, as time goes by. So that was really nice to receive.

A couple of my students also dropped by for a quick visit. I have been getting some visitors that just drop by, although it's better to schedule because of wound care and all that. I guess people understand that if they do just pop in I might have wound care.

Yesterday I had a visit from my office manager. I hadn't talk to her in awhile, so that was nice.

My thrush is also still kind of bad so my voice sounds funny and my mouth gets dry really quickly. I'm not sure what to do about that. Just keep swishing with the Nystatin, I guess. 

Well that's about it. Hope you all are having a good evening. I'll talk to you soon. Bye!

A Big Global Thank You

I had a very busy day today, so I'm really tired. I didn't expect it to be quite so busy. First I saw the wound care nurse, then a colleague came by, then I had a visit from a friend and her family who live in Bend. Then I had an unexpected visit from Brenda and we talked for about an hour and a half.

This was my day to write thank you's. I just want to give a big general THANK YOU to everyone. People have dropped off meals, gift cards for Jamba Juice, flowers and little gifts, paid me visits, given me money, and given Eddie money for tuition next year. I've receive so much that I can't really name everybody who has given me stuff. So I want to give a big global thank you to everybody who has contributed, or given our family food, or helped out in some way. I just want to say thank you. 

I did find out from Beth, the woman in Bend, that my program officer wants to contribute money to the book about King Islanders that I want to get out. For that I'm very thankful to Anna at NSF. She's been so sweet to me. 

Once again, A BIG GLOBAL THANK YOU to everyone who has helped. It really helps me. 

I hope everyone is doing well.

Feeling Better but Weaker

Hello. My nausea seems to be under control. I've also had thrush, which is slowly getting better. I'm waiting for the thrush to be completely gone before I try eating, then I'll go back to eating my applesauce and watermelon at first and see what happens. But that might be a couple of days away. In the meantime I seem to be getting weaker, although I am feeling a little bit better.

Dad put Christmas lights out in the back so now during the early evening when it's getting dark, I get to see pretty lights outside my window.

I haven't really done much, just tried to make sure I'm drinking some fluids. I take the Nystatin for the thrush in my mouth, mom gives me the suppositories, and I have the Fentanyl patches. That's all I'm taking. I've really trimmed down what I'm taking in terms of medication, and I think that's a good thing.

Hope you're having a good evening. Talk to you later!

A Better Day

Today has been a much better day, in terms of nausea. We figured out that one of the drugs they were having me take as a supplement was actually giving me the dry heaves. So I haven't had any dry heaves since I quit taking it.  All I've had is a Compazine suppository, and that seems to keep the nausea at bay. I still don't have much of an appetite and I'm all skin and bones. I don't know how long my body will be able to keep that up. But hopefully the nausea will get under control so I can eat.

I'm trying to keep tabs on what else I'm doing. I still have to make some changes to the will, a gift of stock to my son. We did it wrong the first time so we have to do it again, and have it notarized. And I need to get a new child support agreement done. Hopefully my sister can help me with the child support and the will, then I'll feel like two heavy things that have been weighing on my mind are done.

As far as my book goes, I haven't touched base with my friend yet to see where things are at. I know she's busy with school; so is my other student.

That's about it. I hope you all have a good evening. I wish you well.

Dry Heaves and Nausea

For Thursday.

Hello. I started out the day feeling better, but I ended up having dry heaves again around 6:00, or maybe even 5:30 when Allison was visiting me. So now I'm apprehensive again about my belly and nausea. Finally had a bowel movement, but I needed a suppository to do that. Mom's been helping with the suppository, which I need to get twice a day to help with the nausea.

Other than that I've just been watching tv. I've had three visits from hospice, and one from Allison, who gave me a lot of news about what was going on on campus, which was nice. But she talked more than I did, cause it's hard for me to talk. 

I guess I don't have much else to say.Talk to you tomorrow. Hope it's better. Bye!

More Nausea

Wednesday afternoon.

Basically it's been a bad day for me today. I started off with dry heaves last night and this morning, and I've had nausea off and on all day. I need to get that under control and then I'll feel a little more human. In the meantime I've had visitors that I've had to turn away and I apologize. I'm sorry I didn't get to visit much with Barb, or Heather, Kevin and Meg. And then I cancelled the appointment with Lenea and MaryAnn and Bev, so I apologize for that. 

Anyway, we'll see how I'm doing tomorrow. I hope you're all having a good night. Talk to you later.

Tech Troubles, but back on track

Hi Everybody. Sorry I haven't blogged in a couple of days but there were some technical difficulties between my email, having enough memory, and sending voice recordings to Rebecka to post.

It's been kind of an up-and-down weekend and early week so far. What seems to have done the trick is the Compazine suppository, which means (long story short) I've been able to keep some fluids down at least. The Phenergan and Zofran weren't quite doing it. I also decided to start taking steroids again, just in case my head was swelling and causing the nausea. What I really want to be is nausea and pain free, so that I could eventually do some work. I'm still getting things under control so I haven't really done much.

I have received a lot of nice gifts. I told you about Margret's Pomo Medicine Basket. A girlfriend gave me a check, a fairly large check, for Eddie's slush fund that he can use for whatever he wants one day. I just had a colleague stop by around lunch time and he brought flowers and Ganesh, who will help me on my journey- whatever my journey might be. He also shared some Hindu words of enlightenment and ways to look at things that will help quite a bit.

I've had a lot of visits from hospice. I tried to do my own suppository in the middle of night last night, but didn't quite get it. So a little before 7am we called hospice and within 10 minutes Mary Lou was here to give me my suppository. And I've been feeling a lot better ever since. I need to learn how to give them to myself, or have my mom learn how to give them to me.

I can't really think of anything else, but if I can get this nausea and constipation under control I think I will be able to get a lot more done.

Hope you're doing well. Talk to you later!

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!

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.

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!

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. 

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.

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!

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!

 

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!

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.

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.

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 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.

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.

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.

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.

Doing fine

Dad wants me to stop saying "okay" so I said fine.

I am worried, but because people are sending me good energy, I think I am okay.

I will find out more on Monday when I see Dr. K.

It's cervical cancer

Turns out it's cervical cancer not breast cancer that moved.

I am devastated right now.

Same treatment plan

Found out today that since the cancer in my cervix is. Feast cancer, so the treatment is the same: gemzar, herceptin, and zometa.

In the meantime, on a fluid restricted diet (2000 ml) and trying to eat more solids.

No other news.

Oh, except a big thank you to Cat for homemade Mac and cheese last night and Shannon for homemade soup. Thank you!

Cancer has spread

I found out from my gynecologist that there is cancer on my cervix and since the changes look the same on the uterus, she feels cancer is there, too.

No word from my oncologist, so for now we will proceed with gemzar,Herceptin, and Zometa a week from Friday.

I will let you know more when I do.


CRAP.

Staying one more night

My sodium level was 119 on Friday, 121 yesterday, and 123 today. Normal is 135. The doctor gave me the choice to come home, but for some reason, I wasn't sure. I sorta feel like staying where people can take care of me.

I don't think I can monitor my fluid intake at home like they do here. I am limited to two liters of fluids each day. I know I drink more than that when home. I also feel like I csn get stronger here.

The doctor gave me the choice to stay or go. I guess since I am waffling, I will stay another night.

It will also give another day for the antibiotics to work on the UTI. I had more urinary bleeding last night so I would like that to be better before I go home.

I guess it feels right. So while the sodium is going up, it isn't up enough. I'll stay another night.

Also, if truth be told, I feel like I can leave my worries behind.

In The Hospital

Yesterday, a couple of hours after I received the infusion, I received a call from the lab that my sodium level had dipped "below the accepted low normal". She advised me to go to the ER and have my blood level checked again. In the end, I was admitted.

My potassium was low and when they tried to infuse it, it burned down my arm, so I just took it in pill form.

Just awhile ago, they drew my blood again and we will see what happens.

In the meantime, I have had applesauce, some grapes and melons, and cranberry juice.

I also have a urinary tract infection (UTI) after they finally got a good urine sample. I won't go home until tomorrow.

That is all I need.

CT results

I received my CT results came in today. As expected, there is cancer bin the skin. But also there is "some" progression in my left lung.

In addition, I have "unusual" changes in my uterus and cervix and my cervis was a bit larger than it should be. So, I have an emergency appointment with my gynecologist on Monday.

Maybe what I thought was bloody urine was vaginal bleeding. Of course I think the worst.

But as dad says, don't borrow trouble before we know for sure.

Crap.

Feels a bit better today

I do feel a bit better today. I even considered taking a shower from the waist down, but my brother got into the bathroom before me. My appetite is not where it should be. I mainly eat yogurt, applesauce, and fruit smoothies. I think I am maintaing my weight.

I had a CT scan on Monday and haven't heard from Dr. K. yet. That means, I think, that there is nothing urgent. I will let you know when I hear.

I have physical therapy soon and later is wound care. I tend to average 2 appointments a day.

More news when I hear.

Sorry I haven't posted

I have been struggling with loss of appetite and off and on constipation. So I check Facebook and my email and that is about it. I have beenable to decrease the pain meeds and am takin Zofran 2/day now. Trying to wean off the dilaudid now.

I actually did some paperwork yesterday and need to pay bills this weekend and get my checkbook caught up. Also, with shaky fingers, it is hard to trim my fingernails, so they are way too long for me (perhaps normal for many).

Eddie started school last week and wishes summer wasn't over. He is with his dad this weekend. He is now as tall as I am.

Decided to go with COBRA over OMIP for the last three months of 2011 as I save a few hundred dollars because of acupuncture.

I guess that's all. Life isn't too exciting. Oh. I have a CT scan on Monday and perception on Friday. We will see what else to do after the CT scan on Monday.

Frustrated

A new anti nausea med (Raglan) seems to help, but I still have no appetite. I am afraid if I eat anything too solid, I will get bad constipation. In the meantime, I think I have lost even more weight, even though I try to force myself to eat something.

So I am frustrated. Afrid I will waste away to nothing.

Maybe I need to go into the hospital to get nutrients, fluids, and strength.

I feel like I am wasting away. But dad thinks I am gradually getting stronger. My fears are getting the worse of me today.

I did stay at Eddie's party for an hour yesterday, longer than I thought in the heat.

But I stayed home today while my patents went to the state fair with Eddie.

My family is trying to help me through this time. I am so thankful they are here.

Eddie, I am going to do all I can to be here for you. You are important to me. I love you very much.

Better today

I had pretty bad day of nausea and constipation/diarrhea yesterday. It was so bad that in the evening, my stomach and lower back were constantly cramping.

Fortunately, my rsdiation oncologist mentioned another drug that could help with nausea and moving things through the digestive tract: raglan. I startedvtaking it last night and a couple of hours later, the cramps in my belly and back stopped. And my bowels moved without hurting my back as before.

Thank goodness. So I feel better today, so I will be able to participate some in my son's birthday party today. And I feel I can eat more. Which will help me gain strength.

I have one more question to write before the party and I guess I should get to it.

Not much new

This week, I have had a lot of appointments - wound care, acupuncture,physical therapy, therapy, and home visits with two of Eddie's middle school teachers.

The hone visits went well. It will be hard forEddie the first month or so, but he eventually get the hang of it.

The arm radiation wound is leaking a lot, but part of that may be due to the fact that physical therapy is working to move the lymph fluid upmyarm. If it drains out, that is fib with me. She is also streching my right arm and I started some strength training. I think that is why my right arm hurt more yesterday.

Constipation is an ongoing problem, but my acupuncturist, Brodie, gave me some more herbs that will helpfully help.

I think I have made the decision. To go with COBRA until the end of the year. Then I will move to OMIP(Oregon Medical Insurance Pool). OMIP doesn't cover acupuncture and has a $1500 deductible on top of the premium, so it ends up being a few hundred more than just paying COBRA and getting reimbursed for acupuncture. Acupuncture is very important to me and would like to keep insurance for a few more months to get me over my current pain/constipation/energy hump.

Hope everyone is well!

There are so many good people in my world to make up for some bad apples

Yesterday, I got really really upset at someone - unfortunately I can't name who - but it was painfully obvious that this person had no compassion for my health situation nor the upcoming changes to my financial situation. My family and I even got this idea that this person might think that life might be easier for that person if I just went ahead and died.

Well, it fired me up and gave me energy and I actually did more research on the computer than I have in a long while. It felt good having that energy. And I have some follow-up phone calls to make.

And then someone came through with a solution I needed and reminded that there are far more good people in my life than bad apples. And I want to thank that person from the bottom of my heart. It has relieved some of my financial situation immensely. Please send this person blessings and prayers for me. Thank you!

Staying comfortable

Right now, the only comfortable position for my arms and shoulders seems to be lying down. When I go out in public, I have to keep my left arm up, which then causes me to tense up my right side, too. Even sitting up in my chair is uncomfortable or at a table.

My last arm radiation treatment is tomorrow so this week I hope to begin addressing the lymphedema, pain, and strength in my arms and I can get out and about more.

I need to ask my dad and Scott to clean out my Humanities office this week.

We are also going to try to hold a birthday party at the pool this coming Saturday for Eddie - a very belated one. ineed to find out how many kids from his class will be in town for the holiday week.

I do think things are getting incrementally better, but is frustrating just the same. My dad reminds me that for several weeks after her heart surgery, she was very weak, shaky, and mom did everything for her. Now, she is doing things for me and has even built the deck. So she is a good role model for me to follow. Slowly but surely, right?

Haven't fallen off the face of the earth

I have been busy the last couple of days. Went to Eddie's swim lesson, then lunch with friends, then two appointments. Overdid it in the heat.

Today, I had an eye appointment and the doctor kindly changed out my contacts for me since my fingers are shaky and numb. Offered to do it again next month if I need it.

Then I had a nice long visit with one of my oldest friends, Paula. We have known each other 25 years. Her visit buoyed my spirits. She took me to my appointment, too.

It got too hot today, so dad and Scott will put our air conditioners in tomorrow as I can't survive the weekend in that kind of heat.

Still trying to find a balance with the new fentanyl patch dose, dilaudid, and constipation. Haven't hit the right balance yet.

Lymphedema in my arm is worse in the heat.

Two more arm radiation appointments. I think I am getting more energy, but it is slow work.I have much to be thankful for, including a wonderful care team, friends, family, and colleagues. Thank you everyone!

A Much Needed Break

I saw Dr. K yesterday and after recounting all the side effects I have, he agreed I need a break, at least until after Eddie starts school, so at least a couple of weeks.

We talked about treatment options - chemotherapy - and he also looking I to the TDM-1 trial. He will think about what is next and let me know. What this means is after arm radiation, I will get at least two weeks.

My mood is already better. Tired, but now thinking of other things to do.

He increased the fentanyl patch by 12 mg a dag (now 37 mg) so I don't have to take as much dilaudid, soothe constipation and bloating can start to go away.those sgmptoms are better, but my tummy still cramps.

My CEA was 20, which could indicate both tumor growth as well as tumor death. My interpretation is both. There are spots on my chest growing, but radiation is also killing cancner cells. The CEA has. Een as high as 50. So, it could be worse.

I am relieved I get a bit of a break. I will also get a ct scan to see if Nything else is brewing -will try to schedule for next week when I am stronger.

P.S. I forgot

Remember the blood in my urine I have had off and on for a couple of weeks? I have not had it since Friday since I started drinking Gatorade for electrolytes. When they drew my blood, they said that if anything, I was over hydrated and needed more potassium and sodium.

Glad that is one symptom gone.

Herceptin tomorrow

I was supposed tom have Herceptin and Zometa on Friday, butnright before my radiation treatment, my stomach got so bloated and was cramping that I was in tears the whole time during radiation. The docs wanted a blood draw, but the nurse at the radiation center couldn't get a vein so I wet to Ambulatory Infusion. The nurses there are upset I had the port taken out since it makes it harder to access a vein but the kink in the catheter, pain and loss of range of motion was too much.

The new symptom was like the one that broke the camel's back. Other side effects I have are:

- fatigue
- pain in my arms and shoulders
- yeast infection in my mouth
- constipation
- occasional headaches when the steroid wears off
- lymphedema
- arm wound is weeping lots of fluid so after awhile, my shirt gets wet
- bald
- weakness and shakiness
- numb fingers in my right hand - the shakiness makes it hard to write, even my signature

Meds that I am on to counteract side effects:
- steroids (but weaning off them)
- dilaudid
- fentanyl patch
- occasional Tylenol, for the headaches
- Valium to sleep mat night
- medication for the yeast infection
- gas-x for the bloating
- stool softener
- Chinese herbs
- probiotics
- an acid reducer

I am feeling a bit better today, although I may have stayed up too long cuz my left arm got swollen. Laying down with my arm elevated helps with the edema as well as the pain.

I am worried about getting through Herceptin tomorrow as I couldn't handle it on Friday. Just worried about being comfortable through it. I also have radiation (6 more sessions) and will see Dr. K. But I got through Friday as I was away from the house for three hours and had calmed down by the time they drew my blood. So that is how ai will get through tomorrow - one thing at a time. I think I am also supposed to get my CEA.

My dad has been great about getting my meds. Eddie has been understanding, too. And I think that I am a tad better today than yesterday. So I will continue to take things day by day. I have much to be thankful for - a supportive family, a great care team (the radiation nurse stopped by at home today and yesterday to change my dressing - send her blessings, too).
Thank you so much everyone! Life is still good. I hope to get outside some to enjoy the deck and maybe entertain visitors. Thank you all!

Aggressive treatment

I saw the doctor yesterday who assured me that I am strong even if I don't feel like it. She said radiation is very aggressive treatment and at the moment I need all the rest I can get to heal.

She also said that I should be in no hurry to go off the pain meds because the more comfortable I am, the better I heal. I should expect to be tired for several weeks and will probably be on pain meds for awhile.

I asked why my hands shake and ahe said I am probably just weak now because my body is doing so much to heal from radiation.

My acupuncturist told me that this is my most challenging time with this disease and reminded me that now I am in a very yin time - I just need to hole up and rest. But yin eventually turns to yang so eventually I will gain more energy. The only constant is change.

I occasionally get blood in my urine and I think I notice it more when I don't drink as much water.

The wound in my arm is weeping more, sometimes with more blood. The tumor is shrinking, though.

I get Herceptin tomorrow. Hopefully that keeps other tumors at bay for awhile. Imreallymstart need to gain strength.

The doctor said fact that I don't have an infection and am maintaining my weight is good.

Please let me get through these next 8 treatments. Injust wish I felt better.

Living with pain

As I am trying to recover from the WBR and the arm radiation, mostly by resting, I do live with constant pain. I mean, the fentanyl patch takes the worst of it away, but I do take every 4 or 5 hours for the arm and shoulder pain. I keep heat on my right shoulder and back but the front of my right shoulder, my bicep, forearm, and sometimes my right wrist hurt, so I keep heat on that, too. I guess the idea is to be comfortable, so I try to domthat as much as possible.

In the meantime, dad has taken over some duties tom take Ed on outings. Eddie is at swim swimming lessons now. I have said it before and will say it again - thank goodness for family!

I just wish I wouldn't tense up ny right shoulder. Not sure why. Well, anxiety, I guess. But I should concentrate on rest nd recuperation now, then worry about the anxiety later.

I plan to ask Dr. K not to start any heavy duty chemo for four to six weeks. I want to gain strength first. I will just do Herceptin and Zometa for two more cycles and then see whatnis next. I have Herxeptin this Friday. Hopefully that will keep things under control for now.

I continue to be thankfulmfor everyone's support! Thank you!

Turning point

I decided a couple of hours ago that today will be a turning point. Nowhere to go but up, right?

Eddie and I had a good talk today, good for both of us.

Friends continue their outpouring of support. Thank you for that.

The radiology tech, Tim, was a complete sweetheart and met me both yesterday and today to change my wound dressing. I really couldn't ask for a better support and care team.

Love to everyone!

Being Truthful

Yesterday, I decided to be truthful on facebook and got such an outpour of support that I wanted to say thank you.

My dad says I always put a good face on everything and mentioned that no one else really sees what I am going through. In the end, this week, I have been crying a lot and worried that I am on a downward spiral. Dad reminded me that my blood counts are good, the tumors aren't growing, and I am doing treatments to keep more things from growing. My weight is stable, too.

But there are side effects, including pain and fatigue and nausea. The nausea and fatigue should start going away in the next few weeks. I am not sure of the pain, though. I hate being on pain meds, but if it means I can start operating somewhat normally soon, then so be it. I am on the fentanyl oath, but take an additional dilaudid every few hours. Dilaudid makes me tired, which is okay for continued rest.

I am not really good company right now and sorta just want to hole up at home and rest. I will let people know when I am feeling upmto visitors. Thanks to Jeanne for giving me permission to be lousy company.

As people remind me, I have been through a helluva lot these last few months. Four surgeries, pus three weeks of radiation with two more to go. I will ask my parents today to do a light massage on mt left arm to try to move the fluid into my back and lessen how fat my arm is. That might help decrease the pain. I think the numbness in my right middle finger is better, but it is hard to tell. Because of the numbness in my right fingers and the swelling in my left, I can hardly lift anything.

I just hate feeling so weak and shaky. But time heals, right? Just got to give it time.

Thank you to everyone for reminding me of my strength. I don't feel strong,but maybe now I am drawing on that strength to get me through the next few weeks.

Another big thank you to my family for helping me and taking Eddie on outings. I hope to do that again soon.

Saw the Doctor Today

I saw the radiation oncologist today. In the end, no infectionnin my bladder and my blood work is fine. No idea on what caused the blood in the urine, but as I said earlier, no ibuprofen and no diet pepsi. A very good friend scolded me for even drinking it - thank you!

The biggest concern my doctor had was pain management so she talked with Dr. K and it was decided that I should wear a fentanyl patch. It is longer lasting and releases medicine over three days. It should help with the arm and shoulder pain. At the moment, it gets better for awhile and then hurts, so this will get me more comfortable over the long term. Maybe in a couple of days, I can get back to more normal activities.

I will keep you posted on the patch. Good night!

Didn't sleep as well

I didn't sleep as well last night so I think I am going to lay down and rest again. I took two dilaudid about an hour ago and it is catching up to me.

My shoulders are extranachey this morning and I think the dilaudid is finally kicking in and helping.

I ended up with bloody urine again lad night. Now I think it might be related to diet pepsi. I had one Sunday and ended up with bloody urine through the night. Inhad one yesterday and now I am having it again. So no more diet pepsi or Ibuprofen at least for the next week or so. And more rest.

I need to pay bills later today. But rest first. My last WBR is today. Thank god. Mom wanted to celebrate but I think that needs to wait until I have more energy and maybe less pain.

I may be really tired now and not doing much. But on the whole, I think I am doing much better than many. If I can get through the next few weeks, I can start gaining strength and energy. Then the attention will be on keeping this crap under control. I have a son to raise.

I am just happy that my family is here to help me so much. Seriously. All I do is go to radiation, eat, sleep, and rest.thank goodness for family to help!

No more ibuprofen

The doc at the radiation center took my blood and a urine sample yesterday, but by the time I got there, the bloody urine has gone. We figure it is the Ibuprofen, which I took on Sunday. They alsomsaid I could take a second dilaudid pill so I age been alternating two with one to help with pain.

I cried a lot yesterday, especially at the radiation center. I can't wait for the WBR to be over. Two more sessions. Then I hope the nausea goes away and I just have to deal with the pain from the arm radiation. 15 more sessions of that.

No tears today so far. That's good.

My hair is falling out from the WBR. I expected it. Maybe in a month it will start growing out again.

Still constipated from the dilaudid. I take a stool softener and Chinese herbs for it.

Oh. I found out that I will start having to pay for my health insurance in October - $500 or so a month. And Eddie's social security benefits will also be deducted from my long term disability payments. I need to figure out monthly expenses here soon. We will be okay, but money will be tighter come October. I have extra now, so will save up. Nice to know what the finances will all look like finally so I can talk to Eddie's dad.

A new symptom

After a weekend of rest from radiation, I hardly have any nausea. I do, however, have more pain in my necks and shoulders, mostly left but some right, too. So sometimes I take another dilaudid, which is in acceptable limits. It says to take one pill every 1 to 3 hours for pain. I usually take one every four hours. But last night, aboutn3am, I took dilaudid, the anti nausea med. And Tylenol and ended up with bloody urine since about 4:30am. Thisnhappened twice last week, too, so I stopped taking Ibuprofen (did take a dose yesterday afternoon). I hope it is just a combo of meds on. Nearly empty stomach, ut will talk to the nurse today, especially if the bleeding persists.

Only three more sessions of WBR. And 16 more of the arm. Hope the arm pain starts fading more later in the week. I think if I can get through this week, I should start going up on the energy front. Now, I eat, watch TV, rest, sleep or nap, and rest.

Eddie is home and I am glad for that. He stutters less here than with his dad and seems to enjoy just being his own company. My folks have said that they will try to take him on some outings a couple of times a week while I rest from the treatments.

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.

Will start arm radiation tomorrow

I went to radiation today and thought that I would start arm radiation along with WBR today. In the end, they weren't done planning and have apparently decided to do 20 sessions instead of 15 so they can do a lower toxic dose.

So the next four weeks will be eaten up by radiation.

I hope that those sessions won't be as bad on me as the WBR. I only have seven more sessions of that.

Otherwise saw the physical therapist today, who stretched my arms and shoulders.

In the meantime, the floor is done on the deck. Yay!

Continued taking it easy

I am continuing to take it easy. Dad and Scott continue to work on the deck - it wile really cool when it's done! Mom and dad are out running errands. I am finding it harder to find movies on TV today, but they are there.

I slept okay last night, too, although my TV was on most of the night. Seems like I might wake up every couple of hours, fill my glass with ice, and eat some fruit snacks. Seems like these fruit snacks work really well for me.

I think the Dilaudid is making me constipated, but better that than feeling pain. Will get Chinese herbs to help with that.

My neck and shoulders really hurt when I woke up about 10pm last night, so I lowered my pillow and that helped for today. Still used a lot of heat to loosen up.

I get tired every time I take Dilaudid, but that is better than not sleeping.

I didn't even take a Zofran today. Let's see how ling that'll last.

It is a sunny day, but not as hot as yesterday, thank goodness. Seems to make my lymphedema worse. But resting as my doctors ordered.

Dilaudid helps with sleep

I got a lot more sleep last night. I started taking Dilaudid every four hours for pain, but it also makes me drowsy, so I sleep more, especially at night.

I do have nausea, so I take Zofran regularly and I eat lots of little meals. I hope that after 8 more sessions of WBR, then I can begin weaning off the steroids - the docs say the swelling goes down after a day- which I am keeping at 6 mg per day if I can, of the Decadron. 6 is better than the 16 I was on. I will deal with a little bit of nausea in exchange for going on more steroids.

I don't know what to expect with the arm, although the doctor said to make sure I take Dilaudid within a an hour of doing radiation. She said itmwill get worse before it gets better.

But at least I feel like I am doing something active for the tumors in my grain and armpit.

I expect that TDM-1 trial in Stockton, if I am eligible for it, won't take place until late September, if at all. Rumor has it, though, that Genentech hopes to have FDA approval for the drug to be give to patients in their home clinics by the end of August.

In the meantime, I am just glad I slept. Even if it makes me tired each day. I just rest and watch a lot of movies on TV.

I do have more numbness in my right arm - the three fingers and now into my right forearm a bit. I try to stretch that arm frequently. I am also back to wearing a compression sleeve on my left arm, although I don't go far up my left ATM, to leave the field clear for radiation. My eyes are also having a tough time seeing thongs up close, so between them and my arms, I don't stay on the computer much. I may have to get bifocal lenses.

Still need to work on financial matters, like insurance for me and Eddie beginning October 1. He is covered also by his dad. I will need to work on that next week.

It is much better to feel positive when I feel better. As my acupuncturist says, I am strong, even when I cry. Just glad Eddie is back East with his dad right now while Iam feeling even more under the weather. I hope I feel stronger next week when he returns home. Best not to look to far into the future right now and take things day by day.

A lot going on

On Monday the 25th, I saw Dr. K, the next day, I saw the nurse, on Wed, I saw the radiation oncologist, and yesterday, I saw the plastic surgeon in Portland. The end result is that there are a couple of smaller tumors growing under my left arm, near the armpit. So we did a planning session today and will start Radiation to both the brain and the arm on Monday. I have 8 more sessions of whole brain radiation and 15 more sessions of the arm. I am about ha
Way done with whole brain radiation.

30 days after radiation, I will have another brain MRI and probably a CT scan and can hopefully get on a clinical trial for the TDM-1 trial. But it is in Stockton, California and I would have to go every three weeks. That is what Dr. K is hoping for. Or I could start another kind of treatment here, like a Taxane. But we will cross that bridge when we come to it.

The tumor in my chest is growing, but as the wound care nurse said, it would probably be huge by now so it is good that I had the bulk of it taken out five weeks ago.

In the meantime, I am taking lots of drugs for side effects. Zofran for nausea (but maybe I can taper that off as the antibiotics gets out of my system), steroids for swelling in the brain which helps with headaches and nausea, dilaudid for pain (due to the growing tumors in my arm and increased swelling), Valium for anxiety and sleep, and Ibuprofen, I. Addition to Chinese herbs and supplements.

I am back to not sleeping, get weepy from the pain (controlled now with the Dilaudid), I am a little nauseous, but eating a lot and often helps with that. My appetite is picking up but it is a lot of little meals and I don't eat much. I am not very good company. I am gonna get through these next few weeks. I think next week will be the worst. Or maybe it was this week as I find the right combo of meds to control the side effects. I do think the steroids keep me from being so weepy and the pain meds help too.

It looks like my summer is shot. At least my dad, brother, and friend are building the deck. So I guess we concentrate on the back yard. I can't sit for long in a restaurant, so I am at home or at my appointments.

I am not posting much on the blog or on Facebook because my arms hurt. Maybe now that I take Dilaudid, I can post more again.

Also say Happy Birthday to my son today .. . He turns 11! Wow!