Thursday, February 26, 2009

How I learned to start worrying and learned to hate the Government

Today in the mail, a notice arrived from the IL Tollway.
Dear Katherine,
Your vehicle has been recorded by the IL Tollway's enforcement camera system for not paying proper toll.
First, for those that do not live in IL, our now impeached governor decided that the Tollway was an untapped revenue source to really screw out of state motorists who need to trek through our state using the tollway system. IL residents and some out of state ones, were encouraged to request what's called an IPASS and fund it. It's a little transponder that sits on the windshield of the car and must be funded with a minimum of $40. Every time we go through the toll, our little transponder deducts the toll from the $40. With this little transponder, we pay 50c. Those without the little transponder, pay $1. I was a good citizen and ordered the little transponder and funded it with my $40 and always keep a decent balance on the thing though I rarely use the tollway. As my transponder has been a permanent fixture in my vehicle, I could not figure out why I was being fined for unpaid tolls. I was being fined $65 for 3 tolls I incurred all on the same day, 11/27/2008. So I called the little customer service number and spoke to a customer service rep.
I gave her my transponder number and DL number and she pulled up my account to make sure it was funded and valid. Seeing that it was, she removed the cost of the violation and stated that the problem was the license plate number contained a dash on the website and that this dash may have been the reason that the account did not get credited properly. She then asked if I agreed to pay the $5 toll. Wait a minute, says I, why do I have to pay $5? I have the transponder, I should only have to pay $2.50. Well, there was a dash in the License plate in your account, she explained, that is why you owe $5.
So your system couldn't manage to find my transponder info but managed to find my mailing address and your beaurocrats couldn't figure out who to charge and that is somehow my fault?
Well, says the government employee, you set up your account.
I set up my account 3 years ago. I have been using the IPASS system since and have never had a violation. If the DASH was a problem, why didn't the website state the license was in a wrong format?
We do that now, she explained, but then we didn't.
Then how was I supposed to know to leave it off?
I don't know.
Well then how is this my fault?
Well you set up the account.
3 YEARS AGO!!!!....
She then proceeded to hang up on me.

This may be amusing to read for some and provided it was only $2.50 but I wasn't going to win this argument and the lady debited my account the full 5 bux. I wrote a letter of complaint, but I'm sure that $2.50 will help fill a pothole and it will never be recouped. It was the principle more than anything else.
My Libertarianism is shining through more and more every day. I just don't have the patience to deal with something like this for a lousy $2.50, but what about when trying to get medical care or payments for it in a government system? I dumped my HMO because I was tired as Hell of fighting the clerk in the IPA who insisted that I did not need a Sarcoma Specialist because any old Oncologist needs to do. It's just not cost effective to send me to a specialist for just, I don't know...cancer. I fought that system and lost and paid my specialist out of my own pocket to get the care I needed. But I had that choice. What if all that is available is Medicare? What if the powers that be someday decide that a beaurocrat like the one I just dealt with at the Tollway, gets to decide my care? What if someday, it doesn't matter if I opt to pay for it? Health care ala Tom Dachle means even if you can afford it, a Dr. will not allowed to take it by law because it's not fair that someone has more means and can get better care?
A Government large enough to give you all you want, is powerful enough to take all you have----Thomas Jefferson, a man I have come to very much admire, though flawed in many ways. He's on my short list of people I would love to meet.

Please be wary of politicians bearing gifts. You will pay in ways that you had not intended, maybe even with your life.

Wednesday, February 25, 2009

And the envelope, please....

My first six weeks on Brivanib are finished which in Clinical Trial land, accounts for 2 cycles of medication, each cycle lasting 3 weeks. I was nervous all day. To quote the Beverly Hillbillies, I was as jumpy as a long tailed cat in a room full of rocking chairs. The weather today was warm and sunny and I was hoping that would be a good omen as I pretty much prayed all the way to the U of C saying to myself "Please let there be stability. Please let there be stability." The fact that I was sitting in traffic waiting for road crews to finish filling pot holes didn't help. I just wanted to get there, collect my bad news and leave. Oncology wasn't quite so crowded today and I had my blood drawn fairly quickly and only waited about 10 minutes. My BP was high and my heart rate was elevated. No shock there. Sat in the office and waited for about 10 minutes going over the various scenarios in my head. Then I heard the voice of the trial nurse down the hall saying "I'll go get cycles 3 and 4" HMMM.. I would be on cycle three and four. The Dr. walked in then, asked me how I felt and cut right to the chase.


I was soooo happy.. I got up, I hugged the trial nurse and the Dr. while practically crying because I've gotten such limited good news since this whole adventure began in 2006! Of course I realize that I have a long way to go. Of course I realize that there are bumps, dips and rocky roads in cancer but today, is a good day. Today it is something to celebrate. I left as soon as I received cycle 3 and 4, tipped the valet extra just for being there on this marvelous, fantastic, beautiful day and drove home.

I'd like to thank the academy, Joe, my sister Kris, my dad and the rest of the crew in Arizona, Nonalee, Lynne and all others in Team Iowa, Nita, my Aunts, cousins and my Grandma out there in Czech land who doesn't know I have cancer, my cyber friends and sarcoma friends who I have met during this adventure, Aubree, Elsa and her friend Michelle whose blog I read, "Card Blue" who I check on from time to time, the Sarcoma Alliance, The Sarcoma Foundation for attempting to bring awareness to the masses and support to the patients, to Liddy Shriver and Jennifer Hunter Yates and all those who are no longer with us but whose stories inspired family members resulting in fund raisers for clinical trials, may their memories continue to inspire and hopefully someday find a cure and thanks to all those that prayed for me, sent me emails, and read my random stupid thoughts out here on the internet... I was going to call you all Commie, homo loving, sons of guns but that line was already taken by Mr. Penn.

As it's Ash Wednesday, it's our customary tradition to have Long John Silvers. I stopped at church on the way home. I'm sure God fell over when he saw me there. It's been awhile but I keep in touch. I got my ashes and stayed for mass. It was Emily's first time in church and she was very good. Cassie asked where the Holy Water was because she wanted to see if it would burn Emily. HA HA HA...

Meds for another 6 weeks. Here's hoping and praying and working towards another 20% reduction...or better yet, that elusive NED status that I haven't seen in awhile.

Saturday, February 21, 2009

The Liddy Shriver Sarcoma Initiative is putting together "Moments in Sarcoma" for Sarcoma Awareness Week at the end of June. To add your thoughts visit:

Moments in Sarcoma

It could a moment of courage, compassion, feelings you may have had as a patient of friend of a patient. These will be published on the Team Sarcoma website.

Team Sarcoma is one of the few fundraisers designed to raise money for Sarcoma research. For more information on participation, how one can donate and get involved in a local event, the website is below.
Team Sarcoma 2009

The Jennifer Hunter Yates Sarcoma Foundation is also hosting their annual walk.
Please see the link below for information on how you can contribute via donation or volunteerism if you live in the Boston area.

Jennifer Hunter

Jennifer had a Nerve Sheath Tumor like I have. She also had Osteosarcoma. It took me one second after reading her story to say SCREW THE ECONOMY and I donated to this foundation and to the Sarcoma Foundation of America so they can continue to fund clinical trials, patient education and support.

Please consider donating a portion of your tax refund to either Liddy Shriver, Jennifer Yates Foundation or the Sarcoma Foundation of America.

Friday, February 20, 2009

A little down

Some say TGIF but I am just not feeling very festive today. Yesterday, was my scan. The results will either allow me to stay in the trial or they will indicate that the treatment isn't working. I received a phone call that the results were in from my local Oncologist who I'm not sure I like too much. Well, I mean he's an OK guy but he left a bad taste in my mouth. The day I sat in his office to receive the results of my lung biopsy was not exactly a happy day. I had just been told that secondary tumors were in my lung. Approximately 4 were measurable. 5 were as tiny as grains of sand and all around the Pleura. He came into the office and handed me a piece of paper with a name. Here you go! He's a specialist. He'll know what to do with you. You need some sort of chemo. I asked to see the biopsy and CT results. I had questions. I was in shock. I was scared. He told me he had other patients to see. If I wanted to see the records talk to the desk. Have a nice day! Good luck pursuing treatment! So, today the phone rings from his office. "We have your scan results. Dr. Y wants to know what he's supposed to do with them. Do you need to come in?" I told her that I don't need an appt. I'm being seen elsewhere. And for some reason after I hung up the phone, all the feelings of the day I received my lung biopsy results came flooding back. I felt doomed and I'm fighting at this moment to feel any shred of positivity. To date, I've had 5 scans and a long biopsy. One of those scans showed stability and was the only GOOD news that I have received since May 5, 2006. I am fighting with a "Nothing goes right for me" mentality and though am trying hard to think positively regarding these results, I can't right now. Sucked into Cancer sucks mentality and a WHY ME mode, is not how I want to spend my day. I was up late finishing up work and then decided stupidly to play on Facebook until midnight. Emily woke me up 6 hours later and proceeded to engage in a morning long hissy fit. My attitude could be just a result of SHEEER TIREDNESS or maybe just deluding myself into thinking that changing my diet, my lifestyle and all the other changing is going to make a Hell's bit of difference with this disease. Maybe I've just been conditioned to expect the worst and I usually get it. STUPID CANCER!! STUPID CT SCAN!! STUPID IMAGING DEPT!! STUPID ONCOLOGIST!! STUPID NEEDLES! STUPID CONTRAST DYE!! STUPID BARIUM SULFATE!! STUPID DAMN CLINICAL TRIAL!!! STUPID BRIVANIB THAT BETTER WORK!

Just to be snarky, I didn't drink all the BARIUM! TAKE THAT, CT SCAN!!

Maybe I should just take my focus right now and instead of writing myself into despair, list some ways in which I am fortunate.

1) Physically, I feel great! I have no aches, pains, problems eating, sleeping, drinking, or doing any of my usual activities.

2) I have a JOB!

3) Right now, no toxic chemotherapy making me lose hair, lunch, appetite, immune system function, and blood counts

4) ummm...ok running out of ideas.... I have a car that runs, I can pay my mortgage (at least for now)

5) I have good friends and family.

6) I found a pair of clean white socks!

Anything else?

Wednesday, February 18, 2009

Flu season is in full swing. Three weeks ago, I was the first to contract a 24 hour stomach bug which I passed to each of my children. This past weekend, Kris and Cass were lounging around with fevers, aches, pains and gastrointestinal distress all day on Sunday. Great! I thought, right in time to give it to me before my scan tomorrow. As predicted, they returned the favor and my stomach is starting to complain and I've have had little bouts of nausea and a few unanticipated trips to the bathroom. Tomorrow, if my industrious white blood cells can't contain it, I expect I'll have to drink that awful tasting yucky stuff and really irritate matters. It tastes so awful going down, I just don't want to deal with the prospect of having it come up again. Moving on.....

Here are some hazzards that come when your children/son takes over laundry duty.

1) I put items in the laundry after our trip to Wisconsin in JULY!!! My son just delivered a few of them back to my room. Trust me, he doesn't discriminate. Emily's summer clothes have just been found as well. Where they were hiding? I have no idea. I know where they weren't.

2) Most of my pastels have a nice bluish tint. Why? Because everything gets washed together in cold water. Whites, pastels, jeans...doesn't matter in my son's world. All get equal treatment. Socialism for clothing!!!

3) At least 4 of my black items, a pair of socks, and two shirts, were bleached. As only one of my black socks was bleached, I now have one brownish sock and one black sock. One of my favorite tank tops that had black stripes, is now a grayish tank top with brown stripes. Thanks KRIS!

4) I haven't been able to find a matching pair of socks in WEEKS. My son hates to do socks and though they get washed with dark clothes, they don't get put away. They are shoved in a laundry basket which is eventually used for new dirty clothes. The dirties are mixed with the cleans and VOILA! Washed again and again and again, sometimes in bleach water, sometimes in with the jeans. I have bought 12 new pairs of socks since. I have yet to see one exit the laundry process.

5) I had to have a long talk with the boy on the importance of cleaning the lint trap. It apparently was too much trouble to remove the lint and throw it away. Until I explained to him the FIRE DANGER, my son was oblivious. So now he is better about the lint trap but the lint is tossed on top of the dryer instead of in the trash. It gets mixed with the piles of wash he puts there and not only do I have bleached clothes, I have mighty clean lint.

6) Throwing away empty detergent containers never happens. The recycling bin is 10 feet away. Doesn't matter. I have empty detergent containers everywhere.

So today, I decided to help out a bit and remove some of the wash from the system. In one day, I have put away more clothes than my son or daughter have put away in 6 months. I am just excited that out of this deal, I may get one pair of sparkling white socks.

Wish me luck and prayers on that scan tomorrow. I hate them! I hate them! I hate them! My Doctor actually asked me why I hated them so much and why others do as well. Don't we want to know? NO!! Not always! Especially when we are conditioned for bad news. Also, please if you can, add this couple to your prayers:

Prayer request for Gary and Cindy Hogman:
Gary is serving in Iraq while his young wife is fighting cancer here.
Prayer is a powerful thing and this couple needs our prayers. It must be
terribly difficult to be in Iraq with a sick wife at home. . .

I received this from a contact who works for the American Cancer Society.

Monday, February 16, 2009

Another Monday

I noticed that I am more likely to jot down thoughts here on Monday, Tues or Wed. Towards the end of the week, I get caught up in a million things and generally none of those things are worthy of pen time. On Thursday, I bowl. On Friday, I work a double shift. On Saturday, I work then come home and yell at the kids for not doing their chores. On Sunday, I work then come home and yell at the kids for not doing their chores. My life has settled into a routine that is just hard to break. This past Saturday, I was blessed with a short day at BigBoxMart. To celebrate, I made a date with a carpet shampooer. I was very late with my after Christmas, remove the celebration, cleaning. So, while the world was out celebrating, I was here celebrating a clean carpet that was until my neighbor called and asked if I wanted to go to Red Lobster. Well! Is the Pope Catholic? I finished my carpet and took the kids out for Valentine's Day vittles. We waited two hours for a table. For whatever reason, the economic problems of the nation were suspended on Saturday as half of the Northwestern suburbs was waiting in the 10x12 lobby of the Red Lobster. I downed two Pina Coladas, some coconut shrimp and a grilled shrimp skewer and blew my usual nutritional protocol for the day. But, oh well. Once in awhile, I don't feel guilty cheating a bit. Sunday, I worked a shorter day and went shopping to buy the kids some shoes, Em her new booster seat, and some groceries. Then came home, washed two floors, cleaned the kitchen and got Emily showered. Kris and Cass were moaning they didn't feel well and both had temperatures. Emily had plenty of energy and I didn't. Life is not fair.

Today, I woke up to hear another news story about another Chicago Democrat caught in another corruption scandal. When will IL learn? When you send mopes to Congress, State, Federal and White House, you get what you deserve. High taxes, an increased welfare state, a broke IL/US, HUGE deficits, high gas prices, high property taxes, inefficient government and scandal. Now that IL is a late night joke, I have no doubt that my fellow IL and US citizens will rectify the situation by voting in more Democrats. We just can't have enough corruption and stupidity. Funny thing is, I considered myself a Democrat when I voted in my very first election. Both the politicians I voted for went down in a scandal. I learned. Pay attention to what you are voting for, study the issues, stay informed and always put LIBERTY as the number one priority and vote for those who are best able to protect it and actually respect the Constitution. Those so called "Progressives" who have hijacked the Democrat Party want the age old document replaced to ensure that the Nanny State is alive and well and Big Brother has a permanent place in our education system, our homes, our streets and public places. I am now a fiscal conservative but more Socially Liberal in that I don't believe the government should interfere in the lives of consenting adults. I also believe that while women taut their abortion rights as a choice issue, I believe that choice is a two way street. Churches, Dr's, individuals, institutions that object to abortion should be allowed to excercise their conscience and not be forced to do something or advocate something they deem immoral. I feel the same about gay marriage. If a church doesn't want to perform a marriage between two gay individuals, they should not be required to but I have no problem with the performed civil unions and domestic partner agreements. And since we have so many screaming to get God out of government, perhaps Government should stay out of God. I am a Libertarian, more firmly entrenched in the Libertarian position than ever. We need to take a lesson from the bankers. When you reach for a handout from the Government, the Government WILL tell you how that handout is to be used. Of course, this only applies to bankers. I don't see the same scrutiny of Public Aid recipients who live on Government money. Anyone who loves their freedom ought to know that protecting it means, don't rely on Government provide your lifestyle. Then you are beholden to no one. So, after seeing the life that the government can choose for me, Section 8 and Food stamps vs what I can do for myself, a nicer house and food that is actually healthy and nutritious, I choose to do for myself. It's hard. It's work. It's sacrifice. But if I can't be happy with what I have, then I can't really be happy with anything.

Those that sacrifice liberty for safety, deserve neither liberty nor safety.

Wednesday, February 11, 2009

Just stuff

Here is my attempt to pass the time. It's 15 minutes before I need to retrieve Emily from daycare. Too late to start another order as I'll just have to leave in the middle of it. So, I thought I'd type some thoughts here.
At BigBoxMart this past weekend, I was placed in a very very uncomfortable position and it rather bothered me. I live in a culturally diverse area and my Big Box Mart serves the old, the young, the poor, the rich and everyone in between. On any given day, one can find a few brand new Mercedes parked next to a rusty old Toyota Corolla that looks fresh from the scrap pile. In these economic times, the fabulously wealthy and there are many in this area, are perfectly content to wear $10 jeans alongside America's poor. Our store takes IL LINK which is basically a debit card containing food money for those on Public Assistance and about 30% of the people I serve use it. That said, I am not a fan of the welfare system and many of us who work in the store have seen some egregious uses of taxpayer money as those on Public Assistance have bought $50 worth of candy on food stamps and used their taxpayer provided cash for alcohol or cigarettes. We have also seen the old and tired, the mentally ill, and the disabled use public assistance as well and recognize that these people have a unique set of circumstances that have brought them to Public Aid. My issues with welfare rests with the process that allows egregious uses and abuses as one woman with a Link Card pulled it out of a Prada bag and wore designer clothes. (Perhaps she was shopping for someone else? I don't know) along with those that have fallen on some hard luck and need temporary relief. Either way, our politicians sign people up for assistance but have not set forth an exit plan or encourage its users to take advantage of the free education, free job training and other back to work programs. Mother IL has failed to teach her fledglings to fly and without incentives to leave the system, we have tossed trillions of dollars into welfare and produced not one less poor person. For some of those who come from foreign countries with a lesser standard of living, they are perfectly content to stay on welfare and reap the benefits of other people's money. As a mom, I know that my children won't do squat without prodding and a good old fashioned kick in the pants to teach my chicks how to eventually leave the nest and become productive members of society. As I am talking about the able bodied, not the mentally disabled people that use the system, I don't want a single criticism of how uncaring I am for not wanting to fund the lifestyles of the idle poor any longer than is necessary. I would like to see those that are able, realize a dream, invest in their own futures, care about their education, overcome their circumstances and live a life that they choose, not a life that the government chooses for them. I also know that some on welfare are working hard to leave it and some have fallen on hard times due to a death or a job loss or some other life curve ball and I reserve my ire to the politicians in this state who have not attempted any sort of reform and not towards the patrons because I really don't have a clue what their circumstances are or why they ended up on the public dole. I myself used the system when my husband stupidly walked out of his job, spent our savings on junk, drink and smokes, and me, pregnant, had to leave work for a few months to have a baby. I dragged myself into the Public Aid office which was not easy to do and used food stamps for 3 months. I smile at my PA customers, wish them a nice day and I mean it.
A man, his wife and his small child of about 6 months came through my line. It was obvious he was new to the country and new to the area. He asked me if we took Link and I stated yes we did. As I was ringing up his groceries, a woman behind him in the line looked at him and said "This is a joke!!" She proceeded to shake her head and speak under her breath and as he swiped his Link card through the reader, she said again, louder this time, THIS IS A JOKE! ALL THAT FOR FREE! YOU DON"T EVEN SPEAK ENGLISH! I felt my face getting red and I felt for the man. I'm sure that living on Public Assistance was not what he imagined for his family and neither I nor that lady was standing in that mans shoes. Did she forget that this man was also a human being with feelings? I have heard the term "Burden to the taxpayer" tossed around a lot. I hear it in regard to public aid recipients but I have also heard it in regard to smokers, those who drink more than a beer a night, those who are old, those who are disabled and even in regard to those of us with chronic diseases such as cancer or diabetes. Somehow, the blame for the high cost of healthcare has moved to those of us who use insurance and not to the MANY factors such as the rigorous regulation of the entire industry, the millions of dollars of award money for lawsuits that drive up the cost of malpractice insurance, the ability of a foreign person to come here, get treated, cost the hospital millions and not pay a single bill and many other factors. It is not ME the patient that caused this and the minute we start looking at our fellow man as a cost problem, I think we in America have lost our humanity. It is not secret among my friends and family that I am not a big fan of Government or politicians. I blame them and their rhetoric most of all for dehumanizing some aspect of our population. Bill Clinton waged a war on smokers. Obama, a rich man, waged a war on rich people and corporations accusing THEM as being greedy not one time calling out the greedy and idle rich sitting in Congress such as Barney Frank who was caught with male prostitutes, the Clinton's and their multiple transgressions, Chris Dodd who reaped great profit from failed bank, Countrywide, Franklin Raines, one of the many who bankrupted Fanny Mae, Ted " I let my girlfriend drown" Kennedy... Hypocrisy abounds in both parties and as the recession has deepened, so have the fingers of blame been pointed at everyone and everything for the cause. I don't know all the factors that led to this recession. I do know that it was not caused by a Mexican man who paid for his groceries with Food Stamps, Sunday.

Monday, February 09, 2009

Where did the weekend go?

It's been a long weekend and a very difficult week. There were problems on the home front and problems on the work front. My son seems to be having some issues with everything, school, home, friends. Some of these issues concern me. My sons priorities are with his friends and there seems to be no motivation to succeed in school as illustrated by 3 detentions last week and 2 letters to me regarding Kris's transgressions which are so far, his inability to make it to class on time and his inability to remember his ID badge. This year, he has been late to first period 4 times. This year, he has forgotten his ID badge 7 times and lost it 3 times. At home, I never see him study. I do see him downstairs watching TV or playing Rock Band on the XBOX. His grades at the Semester weren't horrible, 4 B's and 2 C's which was up from 1 A, 1B, 1 C, 2 D's and an F at the midterm. Due to my need to work a second job, I transferred the responsibilities of the house to Kris and Cassie ie in the form of cleaning it and taking care of the laundry. For one year, my house has been a perpetual disaster. My children complain that all they do is clean but when I look around the house, I wonder what in the world they cleaned. They certainly don't dust and if they do, things like dusting under knick knacks is a foreign concept. They simply run the dust rag along the edge of the shelf. Using Windex? Forget it. What fingerprints!? They don't see any fingerprints. The windows, bathroom mirror, TV's and glass on the china cabinet has never been touched by them. Vacuuming? forget it. They don't move anything out of the way or pick anything up and if it's an area that needs an attachment to get to it, they don't bother. They laundry is piled in my room. It gets washed when I wash it. As far as putting it away, forget it. The clean laundry sits in the laundry baskets and washed again and rewashed so they don't have to put it away. I've been missing my socks for months because my kids hate doing them so much, my son hid them in the back of his closet. A few weeks ago, I spent 3 hours in Emily's room playing a game of "Find Emily's clothes." They were hidden all over the house, under her bed, shoved in my drawers, shoved in my closet, shoved in Kris's drawer, shoved in Kris's closet, sitting in a laundry basket in the utility room, shoved in her night table.. Emily had not one sock in her drawer, not one pair of underwear, and her closet was nothing but empty hangers. After I replenished her closet and put all her clothes away, I showed Kris where I wanted things: what I wanted hung up, what I wanted folded and in a drawer, where her socks went etc. So, the following week Kris said, I put Em's stuff away, can I go out? Without checking, (dummy me) I said yes and went into Em's room only to find he shoved everything in the same drawer and I do mean shoved there. Another hour spent putting her things away grumbling to myself. My own room is a disaster to behold but as I'm wasting time redoing things the kids supposedly did, I haven't been able to dig myself out. My frustration level is rising and I'm finding that I am less and less tolerant of his behavior, Em's behavior and Cassie's constant whining that she wants to go to the mall and spend imaginary money and can't because I'm a slave driver. I am more and more resentful that I am working two jobs to make my ends meet. One of the side effects of cancer and treatment is BILLS!! LOTS AND LOTS OF BILLS!! BIG BILLS that I'm still figuring out how to pay despite the fact that I have insurance. No insurance covers everything and I don't complain about it. I look at my medical insurance as just important as my auto insurance, home insurance and other bills and I am 100% opposed to the government taking it over, capping salaries, firing administrators in these uncertain economic times and forcing all of us to have a medicaid card which is so inefficient, beaurocratic and expensive. (I used medicaid for a year. It took the government 2 years to pay my bills and I was sent to collection waiting. Please, oppose any governmental interference and work with the private sector to fix this. The government caused most issues with the high cost of medicine in the first place. Choices are important to a Sarcoma patient. HMO's suck. HMO's are a government created plan. Too much paperwork. Too much fighting. I digress.) It was still hard to receive my tax bill which was 1600 and then a 1K bill from the hospital on the same day. So, I sell cheap socks at Wal-Mart on the weekends to help even things out. If I didn't, I'd be in more trouble and I've explained this to these children time and time and time again. I used to clean the whole house on one Saturday minus the kids rooms. The laundry was done and put away. My room wasn't such a pig pen. One of me did this. Two of my children can't get one room clean in 2 days. There are always excuses and their main one is to blame their little sister. So, Kris had the flu last Thursday. All of my kids had the flu last week, Tuesday was Em's turn, Wednesday was Cassie's turn and Thursday was Kris's turn. It took Kris a little longer to recover than the other two due to his diet of soda and pizza puffs and he lounged around playing PS2 and watching "Supernatural" Season 2. I gave him a pass but he wanted to go to his friend's band practice on Sunday at 1:30. My response was in order to leave the house, he had to finish his responsibilities FIRST. If they weren't done, he wasn't to leave the house. I wanted his room cleaned with floor washed, bathroom done, dust and vacuum the family room and wash the floor and put away the laundry he had piled up on the counter top in the laundry room plus the other laundry baskets folded and put away and sweep up the cat litter that was spilled. I worked two 8 hour days. On Sunday, I went grocery shopping. Yesterday, there was a huge run on 20 lb bottle water, 13 lb cat litter, 20 lbs of dog food bags and one guy bought 100lbs worth of weights I had to lift to scan. My back was killing me. My arms were killing me. Then, I went to the grocery store and bought $150 worth of groceries which I bagged myself and put into the car. I got home and.......nothing was done. The laundry was still piled. The kitchen was still a mess. The dishwasher was emptied but the sink was full of dishes. The bathroom was still a mess. My room still had 3 piles of dirty laundry that the kids didn't touch. The LR had not been vacuumed, dusted, or Windexed. The Dining room table had a new pile of papers. And someone spilled some bamboo skewers onto the floor in the kitchen and left them there. To make matters worse for my children, the laundry in the utility room and the spilled cat litter was still there and my son was not. He left at 11. It was 7 pm and he was still gone. I ......BLEW.........UP! I was stifling back tears of frustration and anger and utter disappointment that after talking to my kids AGAIN this week about how important it is that they pitch in and why, they blew me off. As I promised Kris, I grounded him for 2 weeks. Cassie would have gotten a lighter sentence if she had just been quiet but she had to talk back and sass me while insisting that Emily trashed the whole house after she cleaned it. Since the kitchen table still had crumbs from the Chinese food I ordered on Saturday, I knew she was plain lying about wiping anything down and that ticked me off more. After I blew up, my son went downstairs and as usual, did nothing and Cassie went to go whine to her friends about what an ogre I am. Em went to bed. The house is still a mess. I'm still ticked off and every ache in my back and arms is just fuel for my ire at this moment. Thank you for reading me complain. Now, as I am about to tackle my AT&T inbox which is chock full of work for me, I am trying to gather my composure while thanking the Lord I still have a job and have been struggling to keep in in the midst of dealing with cancer and my kids.

Wednesday, February 04, 2009

Thus ends Cycle 1

I have been on the Brivanib 3 weeks and Cycle 1 is now complete. To celebrate, I spent the entire darn day at the U of C, dragging myself out of bed at 5:00am so I could pack a lunch, get dressed, have breakfast and some coffee. Getting Emily up was a bit of a challenge. Em spent the day in bed yesterday after throwing up all night. She was quite exhausted and didn't want to be disturbed by any means and told me she wasn't getting out of bed until the sun came up! Smart girl!
Sat in traffic as usual for 90 minutes and was 30 minutes late. Took the first blood draw and I was told to be back in 3 hours so I wandered down to the 4th floor atrium and joined the Gilda's Club meeting and talked to one cancer caretaker and another cancer patient until the 1:00pm draw. We had some vein issues at that draw and after the nurse dug the needle in my arm a few times I said "the other arm is juicier. Try using that one." A nice bruise is forming on both arms. The clinical trial nurse came to talk to me and stated that my Platelet count was a little low last week so he ordered another CBC. He said not to worry, they weren't low enough that I'll bleed to death but the number was below normal and he was concerned that it was a side effect of the drug. OH YAY!! Something else to worry about. I went downstairs after the draw and though, great! What if I get kicked out of the study for this. Then what? It replaced my worries that my CT scan will not show any stability or improvement for just a little while. I decided to just chill and eat my lunch, realized I forgot a fork and wandered to the cafeteria hoping that the forks would be outside in the dining room but no.. they were by the cashier. Bought a little fruit bowl just so I could take a fork and knife and then went back downstairs to my comfy chair in the 4th floor atrium. I ate the fruit and was just starting on my salad when I heard my name being called upstairs. The 5th and 6th floors are built so that they overlook the 4th floor atrium. The chairs I sit in are directly below Oncology and I can see the people waiting in line to check in. I jammed my salad back into my lunch box and went upstairs to see what I missed. Apparently, I had an appt to see the Dr. We went over my blood work and all is OK! WHEW! Blood pressure is normal. Temp was normal. Weight is unchanged. Blood work is normal. My body seems to be handling this drug just fine. So starts Cycle 2. In two weeks, I'll be scanned and we shall see if there are any positive results. After no positive results for any of these scan things, I am very, very, anxious about this one. Cancer patients call it Scanxiety. I am just loaded with it.

Now, I am home. I have had it with traffic! I am slipping in the matrix until the next scan and not giving cancer any pen time.
So far side effects have been:
None have been to a degree that it has interfered with my life. I will start moving the drug time to nights so that the little lightheadedness and fatigue I feel will be while I sleep anyway.

Praying for good results!

Monday, February 02, 2009

I'm feeling much better today. My stomach was still a little sensitive over the weekend and I was a little more tired than usual but this morning I woke up feeling good. The kids and I trekked to Iowa City this morning to visit Lynne and Nonalee and the kids. Emily had been pestering me for 2 weeks about the trip and every other word out of her mouth was "Iowa" and "We're going tomorrow right?" Mind you, she started this two weeks ago. Fortunately for her, the answer was eventually "Yes, we're leaving tomorrow." On the day of the trip, after running my errands, packing the car and getting the kids into the car, Emily started crying that she wanted to stay home because she was going to miss Cami, one of our cats. Go Figure! Em never could make up her mind. But she was a good girl with a few little minor meltdowns all weekend and SHE PASSED THE MOVIE TEST!! She actually sat through a movie in a movie theater. I'm proud of her! That is not something she could have done 3 months ago. The kids and I traditionally spend Super Bowl weekend doing our "Christmas". Travel is easy because no one is on the road, neither Lynne, Nonalee or I particularly care about the Super Bowl and have to ask eachother every year if we bothered to notice who was playing, businesses are empty and apparently, no one goes out to eat the day before Super Bowl either. We all went to the Ronneberg Restaurant in Amana, a restaurant that traditionally has lines and a completely full parking lot, and all 9 of us were seated immediately in our own private dining area BY THE BAR!! Anyone traveling to Iowa needs to go to Amana to eat. There is nothing like fresh German food served family style! Sauerkraut, German Potatoes, fresh Rye bread..mmmmmm Provided I eat mainly Vegetarian, I still consider myself a carnivore. I have no moral problem with meat. I am veggie for my health. I did have a few pieces of Schnitzel for old times sake and it did taste good! I'm half Czech and half Polish and have not met one single Vegetarian Polish/Czech person. Schnitzel is just in the blood and my grandmother makes the absolute best roast duck I have ever tasted. I have tried roast duck elsewhere but have not found anything close though Chef Paul's Bavarian House does a pretty good job. I digress. I hear the Steeler's won and the commercials were lame. Don't think I missed out on anything. Sorry to anyone in AZ who cared! The Cardinals are an IL transplant anyhow. Further proof that whatever ends up down there, came from up here first.

Alas! All good things come to an end and this morning it was back to work. My boss was irritated with me about something as usual and all is the way it was before. I had a nice long conversation this afternoon with another very frustrated Ma Bell employee who is a technical person like I am stuck in an admin job we don't particularly get excited about. He's another Libertarian! And I thought I was all alone out there...

Last night, I received my 6th invite to Facebook. Figuring it was a sign, I caved and registered but warned that the page would be lame until I have a new computer and some time to work on it.

Took my brivanib today and didn't experience the usual round of side effects. I didn't have my face down in my laptop around 2 ready to take a nap and no lightheadedness. I don't know if that is a good sign or just is. But, I'm not going to complain. My checkup scan is coming up in a couple weeks. After over 2 years of nothing but bad news with these scans, I am not looking forward to this one. I received bad news at my first post surgical scan, the scan at the one year anniversary of the surgery, the two year scan and the lung biopsy. I had one scan that showed stability and that was the only dot of good news I have gotten since May 5, 2006, the date of diagnosis. I'm not sure if I should convince myself to think positive or not get my hopes up and expect more bad news. My Oncologist was very positive about this drug. From what I'm reading on other blogs, they are reporting stability and partial responses. But there was one naysayer who had to mention that eventually these drugs stop working because she's seen it before and I should get my butt to a surgeon. Thanks a lot! I will settle for stability but am hoping and praying for Shrinkage. Shrinkage is a good thing for a cancer patient. :)