Last night, after this meeting at Eddie's school, I started getting the chills. Took my temperature - it ranged from 99.6 to 100.8. Dang! So, I stayed home today - my nose is congested and I have a cough from post-nasal drip. Rescheduled my zometa appointment, which was supposed to be today. Figured I shouldn't infect other cancer patients.
My class went fairly well yesterday - found energy somehow! We'll see how tomorrow goes. I only hope I can make it. I may take it easy and show a film.
I watched daytime TV all day - if that isn't enough to get me over this cold sooner, I don't know what is! LOL
Well, signing off. Have a good night everyone!
Wednesday, September 30, 2009
Last night, after this meeting at Eddie's school, I started getting the chills. Took my temperature - it ranged from 99.6 to 100.8. Dang! So, I stayed home today - my nose is congested and I have a cough from post-nasal drip. Rescheduled my zometa appointment, which was supposed to be today. Figured I shouldn't infect other cancer patients.
Tuesday, September 29, 2009
. . . but not looking forward to work! Eddie and I could get used to living in Hawaii for awhile. I'd like to figure out a way to stay over there for a month. I realize that I say that every time I travel . . .
Anyway, we had a wonderful time with wonderful hosts. Arna, Renee's partner, was wonderful about helping Eddie with the boogie board on Sunday. We saw a turtle again from a distance. Renee helped, too, and she was trying to coax me a little bit further into the ocean to see the fish, but it seemed to me that the waves were a bit stronger there. I didn't quite have the confidence to go further. So, Renee gave me and Eddie an assignment for next time: learn how to swim better!
Sunday night, we had dinner with her colleagues and had an interesting discussion of things like indigenous epistemology, education, folklore, and anthropology. One woman says that "anthropology is a dying discipline; unless, of course, an indigenous person uses it". I think what she means is that the type of anthropology that grew out of colonialism is dying and the only way it can survive is if anthropologists study their own cultures. She said that when that happens, then it becomes sociology. I disagreed and said that sociology usually looks at larger social processes; anthropology's strength is looking at a micro-level - anthropologists actually talk to people. I should have also added that anthropology is more holistic than other disciplines - it tries to understand the impact of economics, politics, etc., on a group's culture and vice versa. It was a good discussion and one that gave me quite a bit of food for thought.
I caught a cold - Sunday night, I noticed a slight sore throat. Monday morning, I had to pack and I could feel of congestion. It's a cold now. Slightly stuffy nose. A slight cough. A slight headache when I woke up this morning. I took 1000mg of Vitamin C before bed and slept fairly well. I'll take more this morning and also Airborne or something else.
A big "iliGanamik" (King Island Inupiaq for "thank you") to Renee and Arna, Renee's parents, and everyone else I met in Hawaii. We had a wonderful time!
I teach today at noon ... and then a meeting at Eddie's school. Then, rest rest rest. Happy Tuesday everyone!
Saturday, September 26, 2009
This was what Eddie said to me as he and I swam at Kailua Beach on the east side of Oahu. He said that twice while we were in the water and so I asked him why. His reply? "I like the waves." So, definitely, the ocean and the waves are in his blood.
We flew to Oahu Thursday morning and after dropping some things off at Renee's parents house in Aeia, we drove to Sea Life Park. We wandered around this tank that had stingrays and other colorful fish. Then, we saw the dolphin show and were treated with the sight of the "wholphin", a cross between a fake killer whale and a dolphin. After lunch, we saw another show in the Open Theater. Of course, we took seats in the splash zone. We watched the dolphins again and then a little parade that included penguins walking by in front of us and then sea lions. The trainers stopped a sea lion right in front of us and we could see its black teeth. The dolphins did another show and we got splashed by a dolphin who threw a football through the open air roof and who jumped high to do it . . . and splashed us! We all loved it.
After that, we went to Kailua Beach and after Eddie got used to the waves, we saw a yellow turtle swimming about 10 feet away! It was sooooo cool! We stayed in the water almost two hours, then it was back to Renee's parents' house. We took it easy that evening and had dinner at their house.
Friday, we went to the Dole Plantation near the North Shore, where Eddie and I walked through what is billed as the largest maze in the world. We found all eight stations using their map. It took us 48 minutes. It was pretty hot - mid-80s - but we got through. Then back to downtown Honolulu, where we had lunch at the Old Spaghetti Factory. Afterwards we went to a bookstore/Hawaiian art store owned by a woman who was the sister of one of Renee's advisors. Then, we checked out this bead show and I ended up buying some beads from a vendor from Colorado who makes these really cool pendants . . . I'll have to post a picture when I remember!
Then, we went Ala Moana Park to swim - parts of it had lots of coral and so we found a sandier area to swim. Eddie liked being in the water, but it was sorta "boring" for him because the waves weren't as high. Back to Renee's parents' house to clean up and then pack to come back to Hilo.
We just relaxed and unpacked and we all went to bed fairly early. We were bushed.
What's up for today: drive along the east shore of the Big Island, stopping at Rainbow Falls, then to Waimea to meet the former chair of my department for lunch. I think it's at a restaurant not far from Parker Ranch. Back home by late afternoon where Eddie can go swimming again at Richardson's.
Tomorrow: swimming, then watching a local festival where they will perform hula, then dinner with one of Renee's colleagues.
So, we're having fun, keeping busy, enjoying our time here. We brought Eddie's wii and so far Arna and Renee enjoy playing it. My only complaint is that we don't have enough time! Have a great week-end everyone!
Wednesday, September 23, 2009
Renee picked us up at the airport and she gave us lei's! It was pretty cool, because right before we landed in Honolulu, Eddie said, "I wonder if we will get a lei". I'll try to post pics of them because I think Eddie got a male version and I got the female version.
Yesterday, we just relaxed after we got to Renee's house and visited. Renee's partner is Arna. Had a great dinner and just talked. It is certainly humid here. Not too hot, thankfully.
Today, we're heading to the Open Market (a farmer's market) and then the volcano and then the beach. I think there are turtles and fish at this beach, so I should get some good pictures.
Tomorrow, we go back to Oahu and will stay with Renee's parents and drive around the island. We get back Friday about dinner time, I think. We'll go to the beach there, too.
Saturday, we will meet the former chair of my department for lunch in Waimea - he lives not too far away from there. We might see waterfalls along the way.
Sunday, we will meet with one of Renee's colleagues. More beach time then, too.
We leave late morning on Monday . . . darnit!
Anyway, we made it safe and sound and are having fun so far!
Monday, September 21, 2009
Spent the evening packing, figuring out what was important to bring (Eddie and I both have a bit of homework). We are going to have a great time! Hang out on a beach one day; see a volcano; go to the Dole Plantation; maybe the Audobon Society; and relax, relax, relax.
I may not be posting much while I'm away . . . but know that I'm having fun! Have a great week everyone!
Sunday, September 20, 2009
Ate wonderful food . . . and believe it or not, everyone enjoyed the blueberry tart that I made!
Watched pelicans and seals on the beach.
Saw a wonderful sunset.
Enjoyed good conversations and a couple of fun games.
Fell in love with the coast all over again when we (Scott and I) did a series of short hikes around Cape Perpetua.
Pictures will be posted soon!
Friday, September 18, 2009
A group of colleagues and Scott and I are heading to Waldport this week-end. It should be a fun time. We all took certain meals to prepare while we're down there. I asked to join with someone else ... so I wouldn't have to cook. I made a green salad and a blueberry tart. That was fun! From the sounds of it, we're going to eat pretty well! Yay for me! : )
Other than that, no other news. Can't quite get my head into a writing assignment. But doing well and staying busy! Happy week-end everyone!
Wednesday, September 16, 2009
Had a quiet evening at home. Watching TV. Blogging. Doing Facebook. Got in touch with an old friend of mine from when I was in 5th and 6th grade. We did have fun together - I think her mom gave me a shag haircut back in the day! : ) (Hmm, maybe I try to find that picture! hahahaha)
I am trying to cultivate living in the moment these past couple of weeks. Trying not to worry too much about the future. Making peace with the ghosts of the past. Enjoying what the day is giving me. Choosing to be happy each day. I think it's working.
Received an email from my Hawaiian friend. My colleague who is now in White Mountain. Drank coffee with colleagues/former students. Had lunch with my Ph.D. student. Gave encouragement to another former student who was feeling guilty about being a working mom.
I'm happy. I'm feeling loved by lots of people. Thank you. You know who you are. If love has anything at all to do with beating this cancer . . . cancer doesn't stand a flippin' chance!! Thank you.
Tuesday, September 15, 2009
I really didn't take many pictures while I was in Oxford. However, I did take a few.
Here's a shot of me at the Eagle and Child Pub. This is where Tolkien and CS Lewis hung out for lunch every Tuesday. They were part of a literary group that called themselves the Inklings.
The only real concession to the fact that Tolkien and Lewis hung out at this pub were these rather amateurish collages. That was a bit of a disappointment; still, we soaked in the environment. Literally. With a pint or two.
This is a picture of a few of the Australians who joined us. Nick, on the left, was Boromir. I said that Clive, in the middle, was Pippin, because he was mischievous and tended to get into trouble (he was the one who peddled the whiskey the night I had a bit too much to drink), and Jeremy is on the left - a decent chap and a sea ice specialist.
This is another shot of the night at the Eagle and Child. Warrick is on the far left, Tavis (who organized the workshop) is in the middle, and Tom, my colleague from PSU (now at Oxford) is on the right.
My colleague, Tom, just bought a house on Kingston Road in Oxford. We had dinner on his patio one night - his wife, Tia, who is a Fellow at Oxford, cooked a wonderful dinner (Thanks, Tia!!). The other interesting coincidence was that Tom and I discovered we had the same birthday - and he's one full year older than me. Tom has completed placename studies among the Tlingit in SE Alaska. I used his research (as well as Basso's) for the basis of my King Island placenames work. Now, we're working on a collaborative grant related to Alaska Native corporations. I didn't take a great picture. Gak. But proof that I was there, eh?
Okay, that's it! Sorry there weren't more ... I guess I was too busy looking around and working to take pics!
I think the world is trying to tell me something.
What, do you ask, is it trying to say?
That I need to learn how to cook.
I just spent last week-end at my friend, Paula's, house last week-end. She likes to cook and spends a lot of her time thinking about food (that is, when she's not teaching). Preparing meals, gardening, shopping for organic and local foods.
One of my faithful readers, Mary, has just started a blog relating to her adventures with food and trying to teach a recalcitrant stepson to enjoy a greater variety of foods.
When I'm in Hawaii next week, Renee is going to encourage me to "tinker" in the kitchen.
Last night, I was chatting with an old high school friend and coworker, Cathie, on Facebook, who owns her own Italian restaurant in southern California.
I told Mary that she should start a business along the lines of a "cooking boot camp" to help poor souls like me.
Whaddya think? : )
Monday, September 14, 2009
I just found out today that Kulongoski signed the bill into law! I don't know when, but apparently, there wasn't a signing ceremony so I didn't get notified. I will, however, get a signed parchment copy of the law when it's available. She's kinda shy about appearing on a blog, so I took out her reply, which I posted earlier. I apologize for that!
The gist of her reply was that we will need to encourage pharmacies to participate as it is a voluntary program. Also, there will be the "handling fee" that the pharmacies can charge, which would be billed to the person who needs the drug, but Sara's assistant wondered if we could get charitable organizations to donate some money to offset that cost somehow. I'd hope that they wouldn't pass that fee on to the patients who are requesting the medications - these are the patients who cannot afford these meds to begin with. However, there are legal and liability reasons why pharmacies can't charge the donor. Sooo . . . let's put our heads together and see how we can encourage pharmacies to participate - and strongly encourage that they waive the fee - and maybe also encourage charitable organizations to donate money for patients if they do need to pay a "handling fee".
[Note: I found out that Kulongoski signed it on June 17, 2009. It passed the Senate unanimously.]
I got an email last week from my Aunt Nancy saying that she was keeping me in her prayers. Also, when I was in Alaska in July, I found out that Aunt Gemma has my name on the prayer list at St. Joseph's Catholic Church.
I just wanted to thank everyone who is thinking about me and praying for me. I do believe that it helps.
Last spring into summer, I was in the habit of doing some breathing exercises that Andrew Weil talked about in Spontaneous Healing. But I fell out of practice. I'm trying to reincorporate them into my daily life as well as into my pre-sleep routine.
Last night, as I was going to sleep, I imagined breathing in all the good energy and prayers and breathing out the cancer.
I'm reading a book entitled "The Energy Healing Experiments", by Dr. Craig Schwartz (who received money from NIH's division of Complementary and Alternative Medicine to perform certain experiments) and in one experiment, he proved that intention - just the thought of doing something, can be detected. I'll go into it later. My friend, Paula, also had a book entitled "The Sense of Being Stared At", where the author, a biologist, performed rigorous experiments to show that telepathy exists not just among humans but between humans and animals, among other things. The author also talks about intention, for instance, how someone will know or think about someone just before they call on the telephone. This just happened to me last week - I decided to call Brenda up on Wednesday to go somewhere for dinner and when I called, she said, "It's funny. I was just thinking to myself that I hadn't heard from Deanna in awhile" and then you called!
I mention both of these books because I think that intention, visualization, etc., do help. Your thoughts and prayers and intentions for me do help and may be making a difference in terms of my cancer - it's not bad. The numbers are rising, but I'm taking steps to keep them for getting worse.
So, thank you everyone. I really appreciate how often you all think about me and pray for me. Thank you!
Sunday, September 13, 2009
So, what should I tell you first? The good news or the really good news? I'll tell the really good news first.
The article that I worked very hard on last week and the week before was accepted! It will be published in AlterNative, an indigenous peoples journal, in November! I'll get the paper copy sometime that month! Woo hoo!
This does a lot to boost my confidence . . . I have this inferiority complex when it comes to submitting and getting peer-reviewed articles published. Sooo . . . yay!
The other good news is that I spent the week-end with one of my oldest friends, Paula, and her husband, Dwight. I met Paula on my first job after I received my undergraduate degree 23 years ago (WHAT!! Incredible that it was 23 years ago! Sheesh - that must mean I'm getting old, eh? LOL). They live in K. Falls - it was fun to just hang out and visit and talk. Paula and Dwight like to cook, so I always eat really really well when I'm there. Good, healthy food. They're into recycling, local food movements, organic gardening, and foraging on the landscape, whether it be huckleberries or sunstones or what have you. Great fun. Interesting people.
Well . . . time to chill out. Hope you all had a great week-end!
Wednesday, September 9, 2009
Today was Eddie's first day at school. Apparently, it was uneventful, although Eddie said the day was "really long" and he was tired.
As for me, after an early dentist appointment (last week, part of a filling fell out; now I have to get a crown), I went to my office.
And, worked on that article.
Yes, you heard me. I actually had a full day to work on that article. I worked on it all yesterday evening while watching America's Got Talent. I'm really close to being done. And, while it was due last Thurs, the editors contacted me last night (they are in New Zealand) and wondered if I would be able to get it in ASAP. I replied that I could get it to them in 24 hours. I still have a few more hours to finish it up. Yay!
In other news, I seem to be having this kinda low-lying headache. It's not bad enough to take any pain reliever, but bad enough for me to notice. I'll see if it continues.
Last week, when I saw my oncologist's physician assistant, she examined the lymph nodes under my left arm. One has been swollen for several months and the CT scan in July estimated it to be about 2cm. When she palpated it, she thought it was only 1-1.5 cm. It's getting harder for me to find it - I checked it last Thursday and then again yesterday and today. It may only be 1cm.
I'd complained to my acupuncturist two weeks ago that the area under my left arm felt swollen and that when I rested my arm against my body, I could feel that area. So, she gave me a different Chinese herb (called Viola 12) to use. This particular herb is good against swollen lymph nodes and lung tumors, among other things. She said that another patient of hers with melanoma responded to it. So, I've been on Viola 12 for two weeks.
And, I've been on Femara since last Friday. Perhaps between the two of them, they are reducing the lymph nodes, which means that perhaps they are working against the lung tumors. One can only hope, right? I'll keep you posted.
Tuesday, September 8, 2009
So, I've been taking Femara since Friday - that's four nights of taking it. I take it before bedtime. So far, so good. I don't really feel any side effects. Maybe a slight headache here and there, maybe some fatigue but not any more less than what I've experienced before. Others include dizziness, nausea, sleeplessness, double vision. Maybe after it's had a chance to build up in my system, I might get more achey joints. But nothing really to report right now. Let's just hope the medication does what it needs to do in terms of turning off or slowing down the cancer growth in my lungs. They say it might take a month or two to work. I'll keep you posted!
As soon as I download photos from the camera, I will add them to this post.
With spur of the moment decision-making, Eddie, my folks, my brother Scotty, and I went on the "Labor Day Road Trip With the Car That Doesn't Get Dog Sick!" on Saturday. And, yes, sometimes general Kingston silliness ensued.
Two and a half days and 600 miles later, we are home again.
What'd we do? Well, we thought we'd go to Wildlife Safari and since I heard that it was better to go in the morning, we decided to go Sunday morning and stay the night in Roseburg. However, after we got to Roseburg and our hotel, we decided to go to Crater Lake, then Ashland (where I'd already booked a hotel) and then on our way home, stop by Wildlife Safari, but then on Sunday, after Crater Lake, my brother mentioned the Oregon Vortex, so we decided to fit that in as well. Confused about our itinerary? Here it is:
Saturday afternoon - drive to Roseburg; then we drove up the Umpqua River to find waterfalls, but the trail was closed : (. So, we just got take-out and hung out in our rooms and watched movies since the day had been cool, cloudy, with some showers. Got up the next day to sunshine (a pocket over Roseburg) and then drove to Crater Lake. On the way, Dad decided that we should pronounce the words on the signs as if you had to say every letter. So, b-o-u-l-d-e-r became "bo-ul-der" and "debris" became "de-bris" or "deb-ris". We all got a chuckle out of the words - including Eddie. That's the Kingston silliness I mentioned - also on the way to Roseburg, we (well, I started it, but it was something Dad always did when we were growing up) baa'd at the sheep, mooed at the cows, etc.
Crater Lake was really cool. I mean, really really really chilly and cold cool. We were up about 6900 feet in elevation after all. It was 37 degrees with a wind chill up there. And, a fog came up. We stopped at one look-out and we could see Wizard Island, but within the five minutes we were there watching, the fog came in and partly covered the island. It looked pretty cool. We made a couple more stops before getting to Rim Village - looked around up there and at the gift shop.
Here's a picture of Eddie and me with Wizard Island behind us. We look cold, eh?
Wizard Island with the sun shining on it:
Eddie and my folks wouldn't get out of the car because of the cold.
Then started driving south - on our way to Mazama Village, we pulled over at a look out and saw the remains of several fumaroles, which was way cool! (cool in the amazing kind of way - and it was still cool in the temperature sense).
I think the National Park Service was hinting at something here:
Stopped at Mazama Village just to check things out, then we started driving south to Fort Klamath on Hwy. 62, then hung a right (west) to Rocky Point and Lake of the Woods, where we caught Hwy. 140 west for a ways and then took the Dead Indian Memorial Road (didn't know it was named that when we plotted our trip on the map . . . but at least, they were memorializing the dead Indian and not just ignoring that sad part of our history) to Ashland. It was amazing how quickly we dropped in elevation to Fort Klamath and then amazing how quickly we dropped into Ashland.
Found our hotel room - forgot to get the address before I left, but luckily my friend Paula (who had recommended this inn to us) said it was on Siskiyou. We stayed at Cedarwood Inn and while it was a tad run-down, it was nice to get a family room (with two rooms, three queens, two baths) next to the pool for a reasonable price. After relaxing for awhile (and Eddie and I swam in the indoor pool), we headed to this Mexican restaurant where we sat on the patio with my folks' dog, Mimzi. (Mimzi is a little yip-yip dog - slightly annoying but in the end, she did travel fairly well, considering how yippy she gets when we go to their house.) Then, we went to Lithia Park in downtown Ashland and walked around for awhile. That was fun. Eddie climbed up this rope contraption at the children's playground.
BTW, my dad meant to say, "It's good that the DOG doesn't get CAR sick, but it came out "It's good that the CAR doesn't get DOG sick." - well, he started laughing before he finished the sentence but after he explained it, I chuckled and said, "yes, I'm very glad that my car didn't get dog sick!" (Can you imagine if a car got dog sick? It'd spew all sorts of smoke from the hood of the car and refuse to move.) (Sorry - general Kingston silliness - I'm a bit goofy tired tonight, if you hadn't noticed.)
Then, as I mentioned, my brother had heard about this place called Oregon Vortex - and once we got to Ashland, we discovered that it would be quick enough to visit on our way to Wildlife Safari. The Vortex was interesting - it's mostly how light is distorted around the earth's magnetic lines, causing things that were closer to the center to look smaller, etc. We had great weather on Monday - it was sunny with blue skies when we left Ashland.
Then on to the Wildlife Safari. We had fun spotting the animals as we drove through the safari. At one point, near the cheetahs, the cars in front of us stopped and we didn't know why until one in front of us drove away - an emu (or was it an ostrich?) was right next to the car in front of us and was trying to get inside the car window. After it drove away, a baby emu walked up to our car - and I parked next to it so that we look at it through my window. It opened it mouth and closed it a few times and then I put my nose and head against the window . . . and the dang thing pecked it!! I jerked my head back so quickly ... being thankful that I had my window closed! Then, we all burst into laughter.
Rhinos in the shade:
Giraffes on the road:
Chilean flamingos hanging out:
White deer resting in the shade:
And, our [not quite so] friendly Emu:
So . . . a good holiday week-end. Lots of driving. Lots of time in the car. But overall fun. The whole group traveled together fairly well, even the dog. Hope you all had a fun time, too! Thanks to my folks and my brother for joining us!
Friday, September 4, 2009
Offensive Person added some more comments - basically blaming the victim (i.e., my family and my partner) for not making more for themselves and not taking advantage of all the vast opportunities that our country affords us. He also told me that I wasn't adding anything constructive to the debate. Then, he said, "Quite frankly i doubt youd make the professor role on Gilligans Island. if you truely are an educator, I weep for our childrens future."
My reply: I will not dignify your comments with any kind of remark. I do not need to defend myself to you.
I should also say that the "initially okay then becoming offensive" person clarified his statement about "Tootsie". He said, "Deanna, read my comment closer. I was telling Todd that I thought his calling you tootsie was disrespectful, thus the quotation marks. I'll not again assume a common interpretation of puncuation. I don't agree with anyone calling you or any other woman tootsie. You have achieved what you have achieved, congratulations. I mean no disrespect."
I thanked him for clarifying his statement.
Okay, I guess this has gotten enough play. I really don't need to spend any more energy answering these comments.
So, after my last comment, here is more of the continued thread:
Offensive Person: The drug repository idea has been talked about for a couple years. Ive heard a few local politicians discussing it on the Lars Larson show, though Ive never heard how its supposed to be funded. From what Im seeing you seem to be lumping health care and health insurance together, and thats just not right, they are two seperate things. One of the big problems I see is that people are treating health insurance like buying a car. They know they want to get 25 mpg, pay under 25,000 and have an automatic transmission. They also know they have 4 children. They buy a Prius because it meets most of their needs, and is great 5 days a week, but on the weekend they cuss the car because they cant fit themselves and all 4 kids in it. Most people have no idea what of insurance they are buying, then complain when it doesnt meet their needs. The system isnt broken, but it does need some help. Stop the mandates, you dont need prostate exams, and I dont need sex change coverage.
[I tried to post a response but Facebook was acting up.]
Offensive Person: Tort reform, most doctors have to work 100 days just to pay for malpractice insurance, thats insane! Allow more competition, there are over 1300 health insurance compaines in the United States, California can only use 6. Yes its a monopoly set up by the us government, health insurance companies are exempt from anti trust laws, so I guess we need to get these jackasses out of office. Im sorry your liberal, I hope your insurance covers rehab for that, lol. Health insurance shouldnt be a right or left issue, but when someone says I have to pay for their health care or insurance Im going to get very vocal very quickly, especially when I COMPLETELY pay for mine and that of my son.
Person who was not initially offensive but now is: Wow H, you seem to attract long threads of vigorous debate ;) Though I agree with your position Todd, I think "Tootsie" was al little disrespectful. I find the debate to be convoluted, as you say T, between health care and health insurance. This is primarily, due to Obama shifting the focus and is purely political. I pay for my own health insurance as well. I pay $513 per month for a $3K deductable plan that has copay, dental, and drug coverage. I researched it and understand what I'm paying for. I could have bought a major medical policy for around $200 a month with a $1500 deductable that would cover any major medical expenses less deductable 100%. Both my wife and I have pre-existing conditions. So... for less than a car payment, I could be covered in the event of an illness that would render me insolvent. What appears to be happening to me is that the government is pushing for the higher priced coverage for everyone so that every runny nose is covered.
Not initially offensive but now is: The sad facts are that every runny nose will not be covered. Boards of beaurocratic experts will decide what will be covered and how much will be paid to cover it. I wouldn't go so far as to call them death panels, but they are what they are. Based on my daily experience with government divied money, wait times for payment will be months. Payments will be denied for the smallest of gliches on billings. The cost of administration will drive costs up not down and tax payer money will be spent not only for health care but to employ vast numbers of people in positions to "oversee and administrate" the program. Layer upon layer upon layer of new government employees. I don't want my tax dollars, going to pay for another such program that we will not be able to shed ourselves of in the future, ever.
Deanna: L (not initially offensive, but now is), I was not being disrespectful. Calling a grown, professional woman "Tootsie" is disrespectful. The fact that you have now, too, is disrespectful. I just laid out the experiences of myself and my family as examples of how the system doesn't work. Todd made some very uninformed statements about both me and my family for which he had NO knowledge. I did not go spouting off about things for which I had no knowledge. I'm sorry that both of you have to pay for your healthcare coverage . . . but be thankful that you can at least (seemingly) afford to do so. My partner, after he lost his job in this economy (he worked for an HVAC warehousing company), discovered that his COBRA insurance would cost $800/month! His take-home pay was $1500/month and that's with 30 YEARS of experience working as a warehouseman. He also did not have any opportunities to further his education. His rent on his apartment? $650. How is he and his daughter supposed to eat on $50 a month?
Deanna: And, yes, I understand that I combined a discussion of health care with health insurance, however, both need to be fixed to some extent. Our health care system tries to fix the problem AFTER it happens rather than encouraging people to avoid the problem before it starts. Companies make more money, after all, trying to fix it than they do trying to prevent it. That's our HEALTH CARE. But health insurance, as I noted in my previous comment, is also out of reach for many folks. Say my partner gets major medical for $200/month - now that he's on unemployment (which he or his employer paid into for years), he gets $1400/month. Rent is $650; car payment is $300; insurance is $55 - total with insurance $1005. $400/month for food and miscellaneous expenses.
So, do ya think I was being disrespectful to the first person? I don't. That was a case of attacking the person - not the argument.
Thursday, September 3, 2009
Today, on Facebook, there was a call to put the following quote for your status if you agree:
"No one should die because they can't afford healthcare. And no one should go broke because they got sick. If you agree post this as your status for the rest of the day."
Someone I know wrote a post - I don't have permission to post it and since I do respect her, I won't. However, it started this chain of comments, and one person in particular, really pissed me off. I feel strongly enough to post that person's comments, but I won't name names. Here's the exchange, starting with my reply to the person who wrote the original post:
Deanna: Why not the taxpayers? I wouldn't mind my taxes being raised so that everyone has healthcare. Also I think some of the financial incentives should be taken away from those companies who are just there to make money - i.e., pharmaceuticual companies who spend more money on marketing their product (like Pfizer!!!) rather than focusing their efforts on making patient's lives easier. I've got a rant about this on my blog . . .
Next Person: Tax payers are already paying for the health care of the indigent and the elderly. I wouldn't mind making a correction to Medicare/Medicaid with a strong effort to eliminate fraud, but I think that we should start with just that. Fix what we have, improve and expand on what we have to curb waste and offer coverage to the people that don't have it, but need it. Work on ways to cut costs that make sense like tort reform (disliked by trial lawyers the democrats' best friends and their very own special interest). I'm all for trying something to see if it works on a small scale. Let's get Delaware or DC to try a plan and we can call it social engineering.
Next Reply (this got me angry): You wouldnt mind, but the rest of us do! Nobody dies because they cant afford heathcare. If they are that poor then they qualify for medicaid, paid for by the tax payers. Even illegal aliens have to be given healthcare. You really think the government will run this well and efficiently? Like the war in Afghanastan, the ponzi scheme known as social security, the post office, or any of the other bankrupt programs run by our government? News flash Tootsie, all companies are out to make money. Why the heck shouldnt they? Companies grow, make proft, provide jobs and offer wanted/needed products or services. To answer your question H, people should be responsible for themselves, this liberal nanny state weve created to enable the incompetent has got to go!
Deanna: You know - my folks worked for 40+ years and paid into the system - they are on Medicare plus an insurance supplemental and still cannot afford basic things like allergy medication or to have preventive tests completed because the tests are sooo expensive. They owe thousands of dollars in healthcare costs. Don't call me Tootsie - I am a professor, I worked in the healthcare industry for several years, and I have metastatic breast cancer and I probably know WAY more about the healthcare system than you ever will.
Deanna (because I was still angry about "Tootsie"): Tootsie was offfensive and completely uncalled for.
Deanna (apologizing to the original poster for doing all this on her wall): I'm sorry, H, that this all came after your comment. Please forgive me.
The Offensive Person: 40 years of saving and they cant afford Benadryl? So because they were financially irresponsible and didnt adequately plan for their future im supposed to pay for them? I think we all owe thousands in debt for various things but thats called taking responsibility for ourselves and paying for our own wants and needs. Im sorry you have cancer, but you throw that up as if it gives you victim status and strengthens your position, then on top of it you claim to know WAY more about healthcare than I do. I would have though a professor would have been intelligent enough to know you must attack the argument, not the person, and if your going to put you position out in public you must have a little thicker skin. offer facts or ideas to help, not complaints, that fixes nothing. We need tort reform and competition between insurance companies. That will force lower insurance premiums and make it affordable for all.
Reasonable Post by a Friend of the Original Poster: You mean like paying tax dollars for wars we have no business in, or weapons we should never be using among tons of other wasteful thing too numerous to list. I vote for fiscal responsibilty but people still need care and our countries needs are not being met by the current system. Maybe not more tax dollars but a better use of them would be ok by me.
Deanna: [Offensive Person], you have no idea about my family. They tried their best to support us - they were not financially irresponsible - they had no money for education and they just were not given the opportunity to get good jobs. They were barely above the poverty line the whole time I was growing up through no fault of their own. They were in debt BECAUSE OF ... HEALTH CARE AND DENTAL COSTS the whole time I was growing up. Yes, they had insurance but even then, they owed thousands because of the limits of the insurance. I'm not using my cancer status to play the victim card. I'm using my cancer status because I have had to learn how to work the ins and outs of our current health care system - in other words, I have firsthand experience trying to get the system to work for me so that I do not go into debt trying to stay alive so I can make sure that I am alive to see my son grow into adulthood. Mister, you have no idea.
Deanna (apologizing to original poster): Again, H, I apologize. But some things need to be addressed.
Deanna (needing to address another point made by Offensive Person): You also do not know what steps I have taken to try to fix the system - Oregon may become another state that has a drug repository system and if it does, it's because I contacted my state rep and suggested it to her. I talked to a pharmaceutical company last month about what they can do to help cancer patients. Again, you have no idea - you just assume I'm a certain way because I am liberal and I want patients' needs to come before a company's needs.
So, my tumor markers this week were as follows: the CEA was 5.1 (up from 4.2) and the CA15-3 was 31.9 (up from 29.7). This is cause for concern - they are inching up into the range just above normal. Now, on the one hand, my physician's assistant said that she's seen a CEA number of about 700 and the CA15-3 as high as 3,000. My own isn't that bad. However, there is a steady uphill trend and I'd rather snip this thing in the bud before it gets worse.
So, there are several options - including Herceptin with some traditional chemo which would require going in once a week or once every two weeks for an IV treatment. However, I'm gonna try the less invasive option for now - Tykerb plus Femara. I get to stop taking Xeloda. Xeloda is a traditional chemo (which kills fast growing cells). Femara is an "aromatase inhibitor" which means it blocks your body from creating estrogen from aromasin. Now, I've had my ovaries removed, but your body still creates a small amount of estrogen still. That'll be blocked. My lab reports on my cancer state that my cancer is estrogen positive, meaning that it uses estrogen to grow. So, we're going to see if taking that away helps the situation. We'll give in a couple of months to see how it works and if my numbers continue to creep up, then we go to the IV treatments.
I hope Tykerb with Femara does the trick.
Here's the history of my tumor markers - it was just a year ago that my CEA was 0.5!! Imagine that! Here's the CEA:
1/2008 - 1.2 ng/mL
3/2008 - 0.9 ng/mL
6/2008 - 1.0 ng/mL
8/2008 - 1.1 ng/mL (need to double check this number, but it was in that 0.9 to 1.2 range)
9/2008 - 0.5 ng/mL
10/2008 - 0.9 ng/mL
10/31/2008 - 1.2 ng/mL
11/28/2008 - 1.2 ng/mL
12/30/2008 - 1.1 ng/mL
3/2/2009 - 1.4 ng/mL
4/8/2009 - 1.6 ng/mL
5/5/2009 - 1.9 ng/mL
6/4/2009 - 3.0 ng/mL
7/2/2009 - 3.7 ng/mL
8/3/2009 - 4.2 ng/mL
8/31/2009 - 5.1 ng/mL
And, here's the CA15-3.
Sept 2007 - 23 U/mL
Jan 2008 - 31 U/mL
Mar 2008 - 36 U/mL
June 2008 - 23 U/mL (started radiation that month)
Aug 2008 - 18 U/mL (week of August 4th)
Sept 2008 - 14.5 U/mL YAAAAAAY!!!
Oct 1 2008 - 19.6 U/mL
Oct 31 2008 - 15.3 U/mL
Nov 28 2008 - 19.5 U/mL
Dec 30 2008 - 16.0 U/mL
Jan 22 2009 - 15.4 U/mL
Mar 2 2009 - 17.8 U/mL
Apr 8 2009 - 19.6 U/mL
May 5 2009 - 18.4 U/mL
June 4 2009 - 19.7 U/mL
July 2 2009 - 22.1 U/mL
Aug 3 2009 - 29.7 U/mL
August 31 2009 - 31.9 U/mL
And, I'm gonna work hard to destress my life! Got some more work to do in that department!
So, I'm doing okay. Not great, but doing okay and looking forward to going to HAWAII!
I am working on the article . . . worked on edits until 11 last night, printed the thing out, and then started reading what I changed. Made more changes on paper until about 12:30am. Gonna make some more on paper, make the changes on the computer, then print it out and makes sure it reads smoothly and then I'll send it off. Today. I hope. If I don't finish it today, then it won't be published for at least a year. So . . . a big push today. I'll keep you posted on my progress.
Wednesday, September 2, 2009
As I was about to sign into my email, I saw this headline "Pfizer to pay record $2.3 billion penalty". As a cancer patient taking several different cancer drugs, this piqued my interest. It turns out that Pfizer was involved - multiple times - in illegal drug promotions.
Which brings me to the post I meant to write last month about this interesting interview I had while I was in Nome. Right before I flew to Nome, I was contacted by this consultant firm. Turns out they wanted to interview me about my experiences with cancer treatment. I wasn't sure what exactly they were looking for so I asked my interviewer what the purpose of the interview was and why they were interviewing. My interviewer stated that it would become clear as the interview occurred who had hired them. Turns out this consultant firm had been hired by a drug company and, in the end, this drug company was trying to find out from patients how better to market their product.
The interview started with a lot of general questions about my cancer, the stage, and my treatment thus far. Then, there were questions about the medications I take and the side effects I experienced. Follow-up questions continued about one of them in particular, Tykerb, made by GlaxoSmithKline.
The interviewer asked some questions about how I researched information about the medication and its side effects. I told her that I googled the drug and came up with several websites . .. but most of the websites said exactly the same thing in terms of the side effects, which shows that those websites were all pulling from the same information source. She wanted me to name specific sites but I couldn't name them because there were a lot that were the same - most of them were cancer centers. I said the most helpful were patient blogs and bulletin boards since the patients often discussed their side effects and how they coped with them.
Questions then were asked about whether or not a "care package" for patients would help. This care package could include things like pamphlets and brochures about side effects, perhaps lotion for dry skin (Xeloda puts together a care package like this which included Udderly Smooth), etc. She (the interviewer) also asked whether or not a "compliance" system which would help remind me to take the pills would help. There were other questions about what time of day might be best to take them.
I answered that a care package might be helpful initially, but for myself, I only referred to the information I received from Xeloda once and eventually threw out most of the care package other than the Udderly Smooth. I also said that I didn't need a compliance system as I seem to have worked out a system to help me to remember to take my drugs. I also figured out when to take my pills to lessen side effects (like diarrhea or nausea) by using a system of trial and error and noticing how I felt later. I told her that I have a Ph.D. with a strong background in both science and experience working in hospitals for 4 1/2 years. I noted that such a system (like dividing up pills into daily doses) could help other patients and that other patients without my background might need some help figuring out a system that worked for them.
Then, the interviewer kept asking me questions about what the drug company could do to make it easier for patients. My reply, "Don't charge as much for the drugs!!" She kept coming back to what I consider tiny little gestures of goodwill like the care package or the compliance system. I kept saying, "don't spend money on that stuff - make the drugs affordable for patients!" I had to say this several times and I got pretty excited ... perhaps bordering on angry.
I gave her examples of my own family who are uninsured or underinsured and who can't afford the drugs. She mentioned these drug programs (administered sometimes by pharmacies) that could get drugs to patients at low or no cost. I said that that might work for some drugs, but a friend's child takes an antidepressant but it's the "improved" newer version of the drug that isn't part of those drug programs - the older version of the drug that doesn't work as well is. She then mentioned state insurance programs and I said that the paperwork involved in getting someone covered is horrendous and that my brother gave up on our state's insurance program because of how difficult they made it. My partner has had issues with the state insurance program as well. She then mentioned "Tykerb Cares" and I said that I knew of a patient who tried to enroll in that program - a fairly lengthy application - and once enrolled, it only brought the cost of the medication from about $3500/month to $1300/month!! Out of pocket!!! This was for someone who's social security disability check was about that or less than that a month. How the hell is someone to afford even $1300/month!?!
I know that drug companies say that they spend a lot of money in research and development . . . but my colleague said that there have been studies that say that only a small amount of their profits go to R&D - the rest go to the board and the shareholders. I end up being very cynical about drug companies . . .
She kept asking about these other things and I kept saying, "make the drugs less expensive!". In the end, it was frustrating. I'm not sure if the message was heard loud and clear.
It's damn frustrating. Something needs to happen with the health care system in our country. The whole interview experience certainly did not lend itself to making me trust drug companies any more . . . sheesh, the company just seemed to want to do token things for patients - but not really help them ease the financial burden of treatment. That, really, is the crux of the issue. Grrr .. .
Eddie's 4th grade teacher stopped by for a home visit and told us about the major projects and other rules that will be in store for Eddie this year. I think it went fairly well. But what that means is that Eddie starts school next week. Darn! On the one hand, he'll be occupied. But on the other hand, it means that I have to get up EARLY like 7 or a little before. I'm used to sleeping in until 7:30 or 8am. Granted, it's not a big difference .. . but I don't really like rushing around in the morning. I like to wake up gradually and putz around.
So, a few more relaxing days of putzing around are in store for me. Best take advantage of it, eh?
Today - just one phone meeting that got postponed from yesterday. The rest of the day will be spent working on this article! I'm going to miss a tupperware party at a friend's house this evening because I feel like I really really need to use the time to work on it!
Tuesday, September 1, 2009
but my head is still in summer mode. Hmmm . . . managed to avoid working on my article by REORGANIZING MY TO-DO LISTS. I now have FIVE (yes, five) notepads for different projects and each notepad has a list of at least 10 things to do.
I think that means I have too many things to do.
And, probably, it also means that I've been avoiding things to do as they seem to have piled up.
I'm good at avoiding. Organizing my to-do lists made me feel productive - but I didn't actually DO anything yet.
Well, I take that back, I had four conversations with different people about different projects yesterday. I'll have at least two more conversations today with two different people related to two of the projects from yesterday. So, I guess it was productive in another sense. I just need the time to be alone to do MY part - too many administering the projects to actually DO the work. Another reason why I don't want to be an administrator . . .
Calgon, take me away!