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
Thursday, December 8, 2011
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.
Wednesday, December 7, 2011
Friday, December 2, 2011
Friday, November 25, 2011
Sunday, November 20, 2011
I hope you all are doing well.
Thursday, November 17, 2011
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.
Monday, November 14, 2011
Saturday, November 12, 2011
Friday, November 11, 2011
Wednesday, November 9, 2011
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.
Tuesday, November 8, 2011
Friday, November 4, 2011
Wednesday, November 2, 2011
Tuesday, November 1, 2011
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!
Saturday, October 29, 2011
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.
Friday, October 28, 2011
Wednesday, October 26, 2011
Monday, October 24, 2011
Saturday, October 22, 2011
Thursday, October 20, 2011
Wednesday, October 19, 2011
Tuesday, October 18, 2011
Saturday, October 15, 2011
Friday, October 14, 2011
Thursday, October 13, 2011
Tuesday, October 11, 2011
I hope you're having a good evening and Love To You All!
Sunday, October 9, 2011
Saturday, October 8, 2011
Sunday, October 2, 2011
Saturday, September 24, 2011
Friday, September 23, 2011
Wednesday, September 21, 2011
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!
Monday, September 19, 2011
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.
Sunday, September 18, 2011
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.
Saturday, September 17, 2011
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.
Wednesday, September 14, 2011
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.
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.
Saturday, September 10, 2011
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.
Sunday, September 4, 2011
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.
Saturday, September 3, 2011
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.
Thursday, September 1, 2011
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!
Monday, August 29, 2011
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!
Sunday, August 28, 2011
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?
Thursday, August 25, 2011
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!
Tuesday, August 23, 2011
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.
Sunday, August 21, 2011
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.
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:
- pain in my arms and shoulders
- yeast infection in my mouth
- occasional headaches when the steroid wears off
- arm wound is weeping lots of fluid so after awhile, my shirt gets wet
- 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)
- 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
- 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!
Thursday, August 18, 2011
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.
Monday, August 15, 2011
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!
Sunday, August 14, 2011
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!
Saturday, August 13, 2011
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.
Wednesday, August 10, 2011
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!
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!
Tuesday, August 9, 2011
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.
Monday, August 8, 2011
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.
Wednesday, August 3, 2011
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.
Monday, August 1, 2011
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!
Sunday, July 31, 2011
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.
Saturday, July 30, 2011
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.
Friday, July 29, 2011
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!