Last night I had a certifiable hissy fit which is carrying into this morning.
In August 2008, I had decided to go back to school and finally finish that CCNA certificate I had wanted. As the job market was beginning to go South, I felt that this certificate would be a help to distinguish me from all the other laid off IT workers should it come to that. I signed on for 4 courses that were designed to help me pass the certification test that met on Monday and Wednesday nights from 6-10.
I knew it was going to be a demanding schedule. As I was up to my armpits on a huge account at work that resulted in working into the wee hours, my classes were an added stress. My schedule was this:
M and W class from 6-10
Thursday - Bowling night (I'm the league secretary. Added responsibility)
Friday - nights at Big Box Mart
Sat and Sun - Full 8 hour shifts at BIg Box Mart
Tuesday was my one day off and it was usually spent studying or catching up on work on my account.
I transferred the household duties to the children which is where the hissy fit came in. Though I was rediagnosed in November and could not finish the other two classes, the duties remain with the children and needless to say, my children have not exactly been supportive. Cassie's idea of cleaning is to throw everything in Emily's toybox, dirty laundry, dishes, garbage, papers, books, towels, brushes, old magazines, shoes. It's all in there and what falls behind the toybox, stays behind the toybox. When she cleans the bathroom, she skips the shower and the toilette. If garbage falls on the floor, it stays on the floor and usually swept behind the toilette which hasn't been cleaned for ages. I took the laundry duties back after 15 pairs of socks disappeared and I was looking at an empty closet. I had no idea where my clothes were. I went on a 4 day scavenger hunt and found clothes in the spare room under the bed, in the toybox, in my sons closet, under the stairs..... So, to spare myself from nudity, I do the wash WHILE I work my full time job during the day. My son loves to skip floor washing, sweeping, and essentially cleans like my daughter. Over the Summer, my son left an open gas can on the freezer in the garage. Instead of moving the gas can out of the way when he accessed the freezer, he just left it there so that it slid and toppled causing the gas can to spill behind the freezer. Then he left it there. I was so angry, I couldn't yell, couldn't speak. He could tell my displeasure by the popping veins and red face. That coniption has become a household legend. Fast forward to last night. My daughter had made some Hamburger Helper the other day and didn't feel like washing the pan. Instead, she placed some hot soapy water in the pan and left it by the sink. I reminded her Thursday, Friday and yesterday morning to clean the pan already because a swarm of flies was starting to buzz over it. I then went to my second job and of course worked HARD. We were phenomenally busy all day. I never had a break from a long line and was feeling a little punchy by the end of the day. I walked into my house and found that the dirty pan was still sitting there, not one paper had been thrown out, actually nothing had been done at all. The only change was a few new dishes piled inside the dirty pan and I was given some lame excuse by my daughter that Kris had not done his part in the kitchen and THAT is why she couldn't run a sink full of water and clean the pan. I.....BLEW.....UP! I went "Gas can" on the children.
I hate, hate, hate, sweating small stuff. I have enough big issues in my life to deal with and comparably, this is just small potatoes. Part of my ire is absolute disappointment in my children that while I work two jobs and fight cancer, they don't seem to feel that they should help out and treat what I work so hard for like it's nothing, as if I can just go outside to our newly planted money tree and pick off a few thousand to fix what they break or don't take care of. I know many that have lost children this year and I'm sure those that did would take the 4 day old dirty, fly ridden, pan if it meant that those children could be back with them. I feel guilty. But, I also know that these children need to grow up understanding compassion, sticking together, working together and learning respect for the property of others. I somehow seem to be failing at teaching them this lesson and whatever I try falls flat and I am out of ideas. For now, I have informed my son and daughter that there will be no driving lessons or accomodations to go to the Homecoming Dance next Saturday unless they finish their chores. We'll see how they do today. Will I be happy with the work they did or will I go "Gas Can" on them again?

Last week, they started their Confirmation classes. As the Catholic faith focuses on works, I'm hoping they learn a few lessons from the Community Service they are required to do in order to be confirmed. Maybe they can start with the mess in the garage..

I have one criteria for a successful healthcare reform bill. I want it to be crazy about life.
I have been very remiss about discussing it on my blog but as a cancer patient in the trenches, I have watched the debate with interest. A very disturbing discussion caused me to break my silence on the subject here because it related so much to what I have learned on my cancer journey. Politically, I'm an independent. I am Red on some issues. Blue on some issues and Purple on some issues. Political quizzes define me as Libertarian. I believe in the power of the individual and have witnessed throughout my journey, the beautiful things ONE person with passion can do. I have been shown first hand by all who I have met that life is beautiful and that everyone, regardless of who they are, rich, poor, disabled, young and old are threads in the tapestry that forms our Earth. When it comes to who I would trust with my life, I would trust my neighbor more than I would trust my Congress person. I think HR3200 is a terrible bill and I think we, as Americans can do better. We can come up with a uniquely American solution that will result in better access to a good plan, open up choices, preserve the jobs of 17% of our GDP, and does not force Dr.'s to become government employees. I do not want my personal medical info in the hands of the Federal Government more than it has to be to preserve my right to privacy and I can write volumes on how Government might stand in the way of the Right to Life guaranteed by the Constitution. On Friday, I responded to a status posting of a friend of mine regarding healthcare. He is very far left in his political viewpoint. I simply wrote that I am not anti reform. I am anti HR3200. I would also like the access to experiemental drugs preserved for those like me who have no other options because we have such rare diseases. My comment was met with a snide reply from another poster blasting me for supporting the demonic insurance industry and implied that my care should be put squarely in the hands of the American taxpayers to decide what kind of care I should have. This individual went onto say that everyone should have no better than Medicare and to cut costs, rationing should be implemented. Senior citizens and those with terminal diagnosis should be offered palliative care ONLY. They no longer have any worth to society and treating these individuals is not worth the cost to society. When I pulled my jaw off the floor, I decided it was time to walk away from the conversation for a bit and let the words of a self proclaimed compassionate human being who cares only of society, sink in.
This is an idea I have heard before. It was debated at length on a blog I used to follow. A grieving mother who had lost a child to Sarcoma, surmised that if those worthless seniors accepted the palliative care and not life saving treatment, more research dollars could have been allocated to pediatric cancer research. She devised an algorithm that spat out Return on Investment when we spend money on treatments for those nearing end of life. I ask who are we to decide the worth of a human life? How can we say that a senior who is 80, who may have helped build bridges, who may have developed a life saving surgery, who may be a beloved grandfather to many grandchildren is worth less than a 30 year old pimp and deserves nothing more than to be hauled in the back to be shot like an old dog. As he blasted insurance companies for putting a dollar amount on a human life, I pointed out he did the same thing. That isn't reform. When push comes to shove, I argued, a parent whose last option is an experimental treatment, would accept a smaller house or car to procure that treatment. His program trades health insurance for health CARE. He said I was delusional. If only he sees what I see every day in the cancer community.
I have seen spaghetti dinners, golf tournaments, corn hole toss tournaments, marathons, pancake breakfasts, concerts, chocolate sales, bake sales, arm band sales, shop and share programs, and church fundraisers set up to financially assist families struggling with the cost of treatment. I have seen parents sell their houses, sell their cars, because the life of their loved one is not replaceable. Houses and cars are.
I have seen Dr's donate their time regardless of ability to pay.
I have seen hospitals forgive debts.
I have seen neighbors family and friends come together to pray.
I have seen nurses, donate their expertise.
I have seen clinics donate vaccinations.
I have seen acts of great beauty in terrible situations.
I saw a world come together to support Erin and Joel DeSouza. When they mourned we mourned. Maura was priceless.
I saw people come together to support Elsa raise funds for the cancer program at Dana Farber.
That, my friends, is health CARE.
Congress should write a plan that they themselves would use. Perhaps when considering the value of their own lives, we'll get somewhere.

Every weekend, I leave white collar America behind and check items at a large retailer that I fondly refer to as Big Box Mart. I don't save lives. I don't develop new drugs. I don't build buildings. Most of my customers pay no attention to me at all. I'm a mere blip in their day after all, all I do is scan the item and plop it in a bag. Some of my customers never stop talking on their phone through the process or they read a magazine or shush screaming children and barely give me eye contact and that is fine. But, the work that I do there is far from meaningless and no matter what job we do, we serve the community and our fellow man. Every weekend, I assist at least one elderly patron with the credit card machine. As they come from the age of cash, using that machine is daunting for some of them and they nervously run the card through while trying not to look stupid. I help them along and they smile gratefully. Small potatoes? Maybe not. They retain some dignity in an ever changing world. On one occasion, a woman ran 350 dollars worth of items on the belt. For no reason at all, she told me these items were for her adult daughter whose son had committed suicide 3 weeks before. She was hoping the retail therapy would help ease the depression. This woman and I had a 10 minute conversation about her grandson and about the suicide. For some reason, she felt I was a safe ear to speak with. Small potatoes? Not at all. For 10 minutes, I comforted the grieving. This past weekend, an elderly lady shared with me that she had just moved to the Chicago area from Tucson. I was surprised. Usually, people move down there from Chicago. My father did. She told me it was to be closer to family. She had just been diagnosed with breast cancer and she needed the family's support to get through treatment. As I am currently dealing with cancer right now, we had a few minute conversation about cancer. This was her third battle. She had beaten Melanoma and cervical cancer. "I'll beat this too!" she said. "Yes, you will I said" She reached across the counter and firmly shook my hand. At that moment, I was her support. Often, an elderly man comes to our store. He walks every aisle and knows everyone who works in the store by name and we know his. He is 90 years old and his two hour trip to our store is the only contact he has with another human on that day. He buys an item to chat with the cashiers and for those two hours, we are his family. In the scope of a 10 minute interaction, my customers have shared info about their children, hobbies, hopes, dreams, engagements, pregnancies, diseases, loss, grief, gardening tips, and hosts of other topics to someone who is merely a blip on the radar to most of us on every given day. There are no menial tasks, no jobs that serve better than others. The Dr. and the cashier are one.

This week in Pictures

1) Schaumburg High School Marching Saxons Sept 7, 2009
2) Cassie in her band uniform on our way to the Labor Day parade
3) Kris reads the program at the annual Chicago Jazz Festival
4) My view of the Petrillo Band Shell, Jazz Festival
5) Emily enjoys a ride at the Schaumburg September Fest Sept 5, 2009
6) Kris risks my life as he learns to drive
7) Emily after a tough day at Kindergarten
Video of the band at the parade yesterday. You can hear Kris play his trumpet at 4 minutes 5 seconds. He is the trumpeter on the end. It's his horn you hear hit the high octave at the end of the set. Cassie is not visible until 7:42. She is the marcher behind the trumpet player and is too the left of the other clarinet player.

I am pooped! Lots of walking. Lots of activity. It was an abolutely wonderful weekend in every way!

A "my mundane life update"

This week, my baby Emily started Kindergarten. She has been looking forward to this day for months and consequently, I have been preparing for this day for months. I was hoping for a smooth transition into school and as transitions are always tough for Emily, I wasn't expecting a smooth anything. On Monday, Emily woke up bright and early and I do mean early. It was 6:00am when she bounced out of bed, ran to her closet, chose some clothes and insisted on breakfast. I am useless without coffee and while she ran around in circles, I walked a straight line to the coffee pot because that is generally where my brain is that early in the morning and I am completely mindless until it finds its way back into my head sometime after the first cup. At 7am, I served breakfast which Emily broke speed records eating. I then sat down at my little home office and attempted to weed through some emails and was interrupted every 30 seconds with "Is it time to go yet?" "No, Emily. After lunch." I would say. At 8:30am, Emily asked for her lunch. Yes, I know. Precious! Maybe the first 20 times she asked it was. But as it was becoming clearer and clearer that I was not going to get a darn thing done, I began racking my coffeeless brain for ideas on how I could appease her until 12:00 when her fans (ie grandma and grandpa) would arrive and we would take pictures and walk her to school. After several tantrums, a few tears, the implementation of her medications and the growth of a few new gray hairs in my head, I got her calmed down enough to watch "Spongebob Squarepants." It didn't last long but the 10 minutes of peace was nice. FINALLY, noon arrived along with her grandparents and great grandma and she bounded out of the house with her backpack to pose for a few photos. She didn't exhibit one second of nervousness or fear. She stood in line and waited patiently and didn't want me to kiss her in front of her classmates. She's a fast learner. Kris let me have a hug and a kiss until at least the 2nd grade before he was too embarrassed. And into the school she went, peacefully and without protest. She did remarkably well in school and her behavior has been top rate.....THERE. Home, on the other hand, has become a challenge. In the mornings, she's bouncing off the walls with excitement. In the afternoons, she's insisting that go play outside the minute she gets home and we've had some knock out drag out's about that. A family moved in a month ago with a child Em's age who happens to be in her Kindergarten class. On one hand, it's great having a child she can play with. On the other hand, it isn't. Emily sits in front of the window like Mrs. Kravitz from "Bewitched" watching and waiting for the neighbor girl to step outside and then she's a beast until I let her out. As I am working, I can't watch her while she plays. The transition from home to school and school to home, needs a little improvement. I am considering after school care for her with the Y. It might be the best solution.
Yesterday, I went to U of C for my usual sit and wait session. I waited in traffic. I waited in the blood lab. I waited in Oncology. I waited for the Dr. who essentially came in, slapped the desk said, "How ya feeling?" I said "Fine!" He said, "Great! See ya in 3 weeks." Now, he will bill my insurance $250 for that. Unfortunately, I need ONE MORE SCAN before I can go on the quarterly schedule.
Today, I let my son risk my life and drive me to the store. As I'm alive to tell the tale, I guess he did alright but my heart was beating in the 100's. I was diagnosed with Anxiety Disorder when I was in my 20's. I have a decent handle on it now but not all the time. It was hard for me to hand my car keys to my son and relinquish the control of the vehicle to my son who has had approximately 30 minutes of driving time behind him. I couldn't relax and something tells me I won't be relaxing ever again, even when the child has a license. The minute that Kris became a teen, I have been holding my breath. Emily is predictable. Difficult, yes but predictable and she is little yet. My son is now 16. In 2 short years, he will be an "adult" and little by little, I will need to relinquish to my son, more than just the car keys. Today was only a little illustration of how hard that is going to be.

Another good idea for Childhood Cancer Awareness Month

JUST $1.00 CAN MAKE A DIFFERENCE

This is great...let's get the word out.... Be sure to read the press release...this is awesome.

http://www.marketwatch.com/story/aflac-announces-support-for-childhood-cancer-awareness-month-2009-09-01

The campaign includes a new component enabling people to donate to the Aflac Cancer Center (ACC) through the Aflac Cancer Center causes page which can be accessed on Facebook.com or at www.aflac.com/aflaccancercenter. Aflac will contribute one dollar for anyone who joins the ACC causes page and will match donations up to $1 million.
The month-long campaign also includes a text to donate program which opens on September 1, and targets NASCAR fans. It will be highlighted on September 6th as NASCAR star Carl Edwards drives his No. 99 Aflac Ford Fusion at the nationally televised race at the Atlanta Motor Speedway. The car's paint scheme, designed by a 13-year-old patient at the Aflac Cancer Center, signifies a special tribute to the Aflac Cancer Center and all children fighting childhood cancer. The company will sustain the fundraising drive throughout the month of September.

Aflac will donate $1 for anyone who joins the Aflac Cancer Center causes page, an application on Facebook. The company will also match donations up to $1 million and Aflac CEO Dan Amos will initiate donations with a personal contribution of $100,000.

Throughout September, NASCAR fans are encouraged to text the phrase "GOCARL" to 90999 to make a $5 donation to the Aflac Cancer Center of Children's Healthcare of Atlanta. All donations will appear on the contributor's next cellular phone bill

Sale of Die Cast Replica Cars
Motorsports Authentics will donate 5 percent of proceeds from the sale of the No. 99 Aflac Ford Fusion die cast to the Aflac Cancer Center.

September is Childhood Cancer Awareness month

I am dedicating this to all the little cancer warriors. Childhood cancer is another great cause that needs attention. Children diagnosed with Sarcoma account for almost 20% of all childhood cancer cases. No new therapies have been developed for childhood Sarcoma in decades. No new therapies for any form of childhood cancer has been developed in decades.

I received this from a mom of a child battling Ewing's Sarcoma.

The Swine Flu: A Crisis

It's all over the news. The Swine Flu has entered the U.S., and everyone is responding quickly. Here is what has happened already:

--Over 100 schools have closed.

--President Obama called on all schools with possible swine flu cases to "strongly consider temporarily closing."

--Congress approved $1.5 billion in emergency funds.

--Education Secretary Arne Duncan said that everyone involved in schools needs to "pitch in and do our part to prevent the spread of this flu virus."

--The Department of Education and the CDC have held conferences to give updates and advice for handling the crisis.

--WHO Director-General Margaret Chan has raised the alert level to phase 4.

--Shipments of the drug Tamiflu from the federal stockpile, enough to treat 11 million patients, have been distributed to several states.

--Dr. Jesse Goodman, of the Food and Drug Administration's swine flu work said,"We're working together at 100 miles an hour."

--Congress has asked Homeland to consider closing the Mexican border.

Here are the numbers: There have been 226 documented cases in the U.S. There has been one death, a two year old boy with underlying health issues.

Updates on the Swine Flu epidemic are all over the papers, T.V., Internet, and radio. You can't avoid it.

This is a crisis and deserves a fast response. Sick children, and the death of even one child, is a great loss. But I am a little confussed. I would like to point out some comparisons.

1) Since the outbreak in the U.S., there have been 226(via cnn 0540, today) cases of swine flu, and one death. Compare that to the fact that 12,600 families are told their child has cancer each year. That is 35 families every single day of the year.

2) The media tells us that the 226 cases and one death from the swine flu is a "crisis" and "epidemic". But do a google search on childhood cancer, and you will find the media consistently saying childhood cancer, with 40,000 current cases and 2,500 annual deaths, as "very rare".

3) To protect yourself against the swine flu, you should wash hands, not touch your nose, and cover your mouth. You can even wear gloves and a mask. But there is no protection against childhood cancers. In fact, the cause of most childhood cancers is still unknown.

4) The swine flu produces severe flu symptoms. The effects of cancer are beyond description. So just consider this: Cancer is part of the body, so the treatment is a process of poisoning the child to the brink of death, then pulling back hoping they stabilize, then hitting them again. Over and over and over. Maybe a year, maybe 7 years. The resulting organ failures often cause more complications and deaths than the cancer itself. And then you wait and pray that it all worked. "Remission" only means they think they got it all. "Relapse" means they were wrong.

5) The government has opened up it's stockpile of flu drugs to fight the crisis. But there is no stockpile of cancer drugs. In fact, it has been 30 years since a new pediatric cancer drug has been developed. A 5 year study by the National Institute of Health concluded that new drugs for pediatric and adolescent cancers are not being developed because the profit margins are too slim. Therefore mega-doses of adult chemotherapy are administered to children, using a medical assembly line system called protocols. The great need for individualized care is ignored because it is not economically sustainable.

6) Congress has approved $1.5 billion in ADDITIONAL funding to fight the swine flu. With 226 infected people, that is $6 million per person. Childhood cancer received a TOTAL of $30 million. That works out to $750 for each child currently fighting cancer.

So does any of this scare you more than the swine flu? It should. The emergency response to the swine flu has been great. But where is the emergency plan for childhood cancer? And where is the media attention? There is none

TO support the efforts for a cure,
http://www.curesearch.org/
STJUDE
KICKIT

This has been a difficult year. After the cancer recurred in my lungs in November, things were looking a little bleak for me. I was geared to fight, absolutely, but though I avoid perusing statistics and facts and figures, I know the prognosis for stage 4 Sarcoma and it was difficult not to simply write myself off. I experienced little bits of depression and some feelings of unbridled hopelessness nevertheless, I carried on, worked hard, enjoyed my Thanksgiving and Christmas as much as possible. Well, SHAME ON ME! Many years ago, I remember reading an obituary in the local paper for a women who was diagnosed with leukemia. She was terminal yet the obituary stated that remained in school working towards her degree and accepted a proposal from her long time beau. Why, I thought, would she bother? It was over for her. Curtains! Why start anything? 20 years later, I know why. Because as long as I have a breath in my body, I am alive. I am living. There is never ever a time when we can simply stop living. A life with disease is still a life. I have no clue when the elusive cure for cancer will be found. It can be today. It can be next year. We had no idea how my cancer was going to react to the trial drug but it, in addition to my lifestyle changes, may have resulted in a stay for me. Statistics are liars. Sure they can show trends but a statistic is just a number that cannot measure my spirit, my will, my choices, or the strength of my determination. Never should anyone stop living in the face of any adversity. So here I am almost one year later in a better position than where I started and I am making plans for the FUTURE. The word is still a little daunting for me. When I try to form the words "Next year" sometimes my head spins as I remind myself I can only deal with today. Next year is an enigma. But, life seems to be urging me in a direction I never thought I'd ever go. The idea of letting go of the bits of my old life that sustained me, is scary but I'm not dead yet and I may live to 80, I just don't know so, onward. I am ready to let go.

Post Script:
I would like to thank a few earthly angels who helped me with a few needs. School started today for the high schoolers. Emily begins Kindergarten on Monday. I was looking at over $1000 in fees and had no idea where it was going to come from. When I thought of those fees and the fact that I still needed to buy their supplies, new clothes, and shoes, I was in a bit of a panic. I owed the village $500 for parking tickets and fines for leaving the garbage cans on the curb longer than 24 hours. (The kids owe the garbage can fees. I left them out there to teach them a lesson as I knew we would be fined.) I owed the church $400 for Confirmation classes. $800 of the school fees were waived thanks to an industrious worker at the high school. My father in law handled the new clothes and shoes for Kris and Cass. Grandma handled Emily's school supplies and a few new pairs of jeans. A kind woman from the Village knocked down the $500 to $250 and an unexpected find paid for the COnfirmation classes. I've been asked how I will handle the financial problems associatd with tuition costs etc. if I am accepted into the nursing program. It will work out. I am almost, 99.9% sure that it will. Just a feeling.

With the band camp successfully completed, life has returned somewhat to normal and I don't have quite so much running around on the agenda for this week. Cass and Kris start school on Wednesday and the only thing missing is school supplies. The high school really does not give a supply list so I buy the standard pencils, pens, notebooks etc.
Emily's IEP meeting went fairly well. For those that don't know, IEP stands for "Individual Education Plan". My daughters diagnosis is ADHD with Oppositional Defiant Tendencies. If you look these disorders up on the Internet, it makes is sound as if I'm living with a little monster but that is not so. She is spirited and defiant at times and that is absolutely true but she is also bright, creative, funny, engaging, and gentle. Unfortunately, her own biology works against her and her team at the school had some good ideas for managing her behavior. I was leaning towards putting her in special ed right away but her Psychologist felt I should give Emily every chance to succeed in a mainstream classroom. If that doesn't work out, we can move her. She will be screened tomorrow, the screening being a test to see how much she already knows in the way of shapes, colors, numbers and letters.
Kris successfully passed his written test and now has an official state drivers permit. I have not yet given in to letting him drive as I would prefer he risks his instructors life for a few weeks before I let him be the nut behind my cars wheel. His grandpa let him drive on Saturday night and well...I believe if grandpa were a cat, he would be missing one life.
I am contemplating a huge career change and have been in touch with a local college to inquire about their Nursing curriculum. There are a few things I will need to complete before the application can be submitted.
1) Two Anatomy and Physiology classes
2) A CNA license.
3) A Nursing entrance exam.
I am looking into taking the Anatomy classes online but need some direction as to what online schools accredited programs will count as the successful completion of this pre-req. I plan on trying to get into the CNA class in the Spring. I have already filled out the college application and after the college finishes handling the craziness of the first two weeks of school, they will call me back with an appointment time to speak with a school financial couselor and admissions specialist. How will I pay for this? I don't know. I qualify for Stafford loans but paying for the classes is not the only financial consideration. The mortgage will need to be handled for the duration of this two year program and of course, there is medical insurance. I can buy into the college's group plan if I need to. All this will be discussed during my meeting. This could the smartest thing I've done or the dumbest. Time will tell.

T minus 4 days....

until the teens start school.
This week has been a blur so jammed packed with things to do that I can hardly catch my breath. Both Kris and Cass have been up to their armpits in Band Camp..yes, I saw American Pie and know all about that one time but...
Cassie has been griping all Summer about this and even longer actually. One of our mom vs hormonal teenager arguments had to do with her not wanting anything to do with Band after 8th grade. When she was choosing her electives, I was pretty strict on what she could choose. As she is in the college prep program, I negated fashion design, sewing, and life skills whatever that is exactly and pushed for a foreign language, history and Band. Because of her good grades in Junior High, she was rewarded with an extra elective. I conceded that she could use the extra to take Foods but the other two electives needed to have college material type substance. She chose German as elective number two but it was elective number three that caused two weeks of fighting. She wanted Fashion Design and I wanted Band. She whined. She cried. She pleaded. She begged. But, she marked Band down on the course selection sheet and fumed about it for months. She didn't want to march. This 5 day camp teaches them the music and the formations. On Monday, she reluctantly grabbed her clarinet and stomped out the door. When I picked the kids up 5 hours later, she was chattering about her mis steps and faux pas. By Tuesday night, she said...get this.. SHE HAD FUN! SHE MIGHT JOIN BAND NEXT YEAR! GO FIGURE! She's made new friends, seen old ones and got a tan. Win Win!
THe first day of High School is next Wednesday. Emily starts her Kindergarten adventure on the 31st. Big changes on the horizon...

Oceans of Hope Sarcoma Fundraiser

We need your help for the OCEAN OF HOPE CAMPAIGN 2009.
Our goal is to raise awareness and funds for The Sarcoma Alliance so that we can continue our work of guidance, education, and support to sarcoma patients and their caregivers. To make am donation online please go to:

http://www.active.com/donate/oceanofhope2009

The Ocean of Hope campaign is the largest fund raising event of the year for The Sarcoma Alliance. Ocean of Hope (O2H) is a paddle board race held each year in August in conjunction with the Catalina Classic in Southern California. The 32-mile course begins at Catalina Island and finishes at the Manhattan Beach shoreline.

The O2H Campaign is a special group of paddlers who have annually volunteered to dedicate their race to the benefit of the Sarcoma Alliance and thousands of sarcoma patients and their families. Every yard, every mile, and every arm stroke, will be made in the hope that their passion and grit propels people to give to the Sarcoma Alliance this year.

Campaign by visiting our site: http://sarcomaalliance.org/Main.html

Home again

Once again, I celebrated decent scan results with a nice trip away. It was beautiful but sad. The first shutter was put on our little cabin, the swingset dismantled, and the outside furniture put away for the Winter. In October, the rest of the shutters will cover the windows and the cabin will be winterized until the Spring when it all starts over again. We will miss it.
Today, the pre-school races begin. Emily will venture into the fray with a Kindergarten open house. Cassie and Kris start "band camp", a 5 day intensive clinic at the high school. They will learn the music and formations for the football games, get fitted for uniforms and hit mom up for about $300 for band fees and uniform fees. Class schedules were posted on the school website resulting in facebook frenzy as anxious teens posted their schedules so they can figure out who has the same classes. Time for clothes shopping, new backpacks, and lunch money. I can hardly wait! Me in my dire financial straights, owes the high school a paycheck for band and drivers ed. Screwed! I am Screwed! Let the fun begin!

Brivanib Week 30

Scan results are nothing new, nothing grew. Yes, I am still sure I'm on the placebo. Only one of my tumors meets the criteria for this study: lower left lobe nodule 1.7cm. It's been 1.7cm since March. I also found out today that I have a swollen lymph node. otherwise, the results were relayed in 3 sentences Bilateral Lung nodules, stable. Abdomen Unremarkable. Surgical area Unremarkable. It also looks like the little liver cyst is gone as there was no mention of the "Low Attenuation Lesion."
A little glimmer of good news in an otherwise dismal week made me smile! Of course I came home to a nasty gram from the Village about unpaid parking tickets but I'm stable so who cares?
I don't think of all the misery but of the beauty that still remains. ~Anne Frank

I really haven't felt much like writing. To be honest, I have been a little down in the dumps and have been trying to cure myself of some good old fashioned bad attitude. It happens to the best of us I suppose and I have been trying to snap out of it. As I expected, my mid year review did not result in happy conversation. All day in front of the computer working my big accounts, resulted in a boss who made it sound like I did nothing of value for 6 months. It's no secret that I have not enjoyed my job for a few years now. It's not the actual WORK that is the problem. It's the environment, the constant swinging axe, the work day that never seems to end, the devaluation, and the dead-endedness of it all. There is nowhere to go in this company anymore. Those of us who are left, sit in the same job, unable to advance anywhere because our company heavily offshores and my next step, my short term goal, is sitting in a Center in Europe. I started becoming frustrated and bored. Last year, I decided that it was time to get out of Information Technology and started the steps to return to school for my Masters. I began studying for the GRE, attended an info day at Benedictine University for a Masters in Clinical Psychology. My goal in life has little to do with money. I want some to pay the mortgage but if I never own a Mercedes, that's OK. If my house never gets any bigger that 1800 square feet, I can live with that. If I can never sail a yacht on Lake Michigan, I'll get by. I want a career that makes a difference to someone. Now, I just need to figure out how to achieve it.
This morning, I took my ducklings to church as it was one of those rare and wonderful occasions. I did not work at Big Box Mart. My youngest, Emily, was given the option to stay home. Last time, her behavior was pretty good but as she has ADHD and some oppositional defiant tendencies, I never want to push it. She opted to come along and I talked to her on the way to church and asked her to tell me how she should behave. She had packed some of her barbies to bring along, all naked of course, and she promised she would sit quietly and play. WEll that lasted 5 minutes. After the first reading, she jumped on my lap and said "I have to go potty." That is Emily's code word for "I'm bored and I don't want to sit." I told her to please sit down and remember what we talked about. After 5 minutes, she stood up and demanded she go potty, potty, potty, potty. I reached over to Cassie who was closest to the aisle and asked that she take her. Cassie gave me the "Oh my God mom" look of hers but did it and as I predicted, Emily produced two drops. WHen she returned the pew, she stuck her hands in my face and said "Don't they smell good?" She plopped herself on my lap and started singing really loudly. I told her to hold it down. She then grabbed her barbies and sang a little louder and held them up with both hands. I reminded her that she will be grounded from the park if she didn't cool it. She was ok for about a minute and then started changing seats, annoying the old woman next to her, talking really loudly, singing, griping she had to go potty again, and I took her out at that point while agreeing 100% with the old definition of stress. The church is attached to a school so I took her out the back into the hallway that leads to the classrooms. She ran around in circles, skipped, touched everything, wouldn't listen to a word I said, and I of course got THOSE looks. The looks from others I see every time I take Em out in public and she misbehaves. Those "What a horrible mother. Can't you control your child?" looks. I can hardly blame them. I used to do it myself until I had a child like Emily. Now, the only looks I flash those mothers are piteous looks that say "I understand what you are going through." The Usher standing by the door, did give me a little grin. Two children were being Baptized at this Mass. At one point, I wanted to take her to the Holy Water, bathe her and say "LEAVE HER!" But we stuck it out until the end while creepy Omen music coursed through my brain and Emily was not allowed to go to the park, have ice cream or play in her pool. I secretly hoped that no ice cream would excorcise the demon away. Next time, I think I'll just pay the 10 dollars to have a babysitter keep an eye on her. I guess, as my son once said after a Mass, "Jesus takes too long" for a girl with ADHD.

Vacation photos

From the top:
THe Root River in Southern MN along scenic byway 16
The trail leading to our cabin
Emily being Emily
The Black River in Wisconsin about a mile from our cabin
A Mississippi Bald Eagle
The Lacrosse Queen, the paddleboat we rode on our Great River tour.
My daughter took these photos as I have not uploaded mine yet. She did well!
How I miss it! This area of Wisconsin passed the "Could Kathy live here?" test hands down. Cheap taxes. Good housing prices, one hour from the Mayo Clinic. Close to the University of Wisconsin. Beautiful surroundings. Simpler living.

Eye on the Sparrow

Yesterday, Cassie called me from outside our front porch. Yes, I'm aware she could have come in and spoken to me from the foyer but she's 14, armed with a cell phone and knows how to use it. She wanted me to come outside right away! So, I finished what I was doing and went outside to see what the commotion was about. Cassie's friend, Angela, was holding a baby sparrow in her hands that they had found hopping around on the ground. As it was unable to fly away, Cassie and her friends, picked up the little bird and brought it here hoping that I would know what to do. I told her that the bird could no longer be released to its own devices and suggested she call a local Animal Rescue to see if anything could be done. We looked on the internet and found a number and called it. But this particular rescue was unable to help their little bird friend so Cassie and Angela visited a Vet's office and the office made a call to a local wildlife shelter who said they would look at the bird to see if there was anything they could do but they were now closed for the night and suggested Cassie bring the bird in the morning. The girls then filled a basket with a towel to make the sparrow comfortable and provided it with water and seeds and proceeded to care for it through the night. The little thing was surprisingly unfazed by 3 ogling teenagers and a hyperactive toddler showering it with attention and it twittered and chirped like he was still in his tree. This morning, Angela's mother took the girls to the wildlife rescue. They took him in but told Cassie that they usually do not take in house sparrows. This one seemed to touch their heart as our little bird friend was born without eyes and there was no way he could ever be released to nature but they promised to make him comfortable and try to feed him and see what happened. However, they told Cassie he may have two weeks at best because he was still so young and needed his mom to care for him.
It was good that Cassie showed this little bird such compassion and that even though it's odds are not good, someone is now caring for it and who knows? Maybe this little guy will become someone's pet. "So do not be afraid; you are of more value than many sparrows." Matthew 10:29-31

Thus ends Sarcoma Awareness Week. I tried to do my little bit and hopefully all our little bits will result in a largess. The re-entry into my mundane life has not been smooth. I enjoyed my time away just a little bit too much and now I feel out of step and dissatisfied. I've had trouble focusing and concentration on my job has been difficult. I have been struggling with major job DISSATISFACTION and guilt for feeling dissatisfied when I should be grateful but right now more than anything, I want to move into a career that makes an impact. Because my company is Outsourcing crazy and has moved many many jobs overseas, I work in an atmosphere that is extremely devaluing and I having trouble with that reality. I want to work in a career and a company where I mean something and can mean something to a customer or patient. Instead, I'm living under an axe and I have since 2004 when my company laid off 30,000 American workers and sent those jobs to Europe, China and the Philippines. Prior to vacation, I was working on a new, very large account for a major oil company that is based overseas and my job required ordering network equipment and upgrades. To make a long story short, all the ordering needed to be done manually, meaning I literally emailed purchase orders using Excel as opposed to having everything done nice and neatly in our various tools. This manual process added many nuances to this network solution and a lot of rework and a lot of late nights in front of the computer. I literally worked from sun up to sundown with little breaks during the day to take Emmie to daycare and pick her up, sometimes grocery shop or eat something but the 15 hours days were getting to me, coupled with being in treatment and driving back and forth to the U of C, dealing with scans, scanxiety, medicine side effects, uncertainty, an ADHD child with Oppositional Defiant tendencies who also needs Dr appt's and meds, an 8th grade graduation, a 16 year old, bills, bills, bills, and more bills, a messy house that can use some repairs, and a part time job to boot, I was more than happy to leave it all behind for 10 days and pretend it didn't exist. I was happy. I felt free and unburdened. And then I returned home and am right back where I started but with a better tan. I can hardly WAIT to see what my midyear review will hold for me but I'm expecting that I will not be happy with it and as I'm sitting here wondering why I bothered to put in so many hours, I can only hope that I did not waste my time. I have been feeling just a little burnt. To really add insult to injury, I had 3 Dr. appt's last week. One was for my girls. Both needed their school physicals and each were required to get at least 3 shots. Two appointments were for me. My trek to the U of C resulted in more disappointment. Apparently, I need one more scan. The three month scan schedule doesn't start until week 36, not week 24. I am resenting the script I have for the scan in a big way. In addition, due to a misunderstanding and miscommunication, I waited over two hours in the waiting room to find out that I need another scan. The Dr. and trial nurse thought that they had rescheduled my appt for next week and they left for the day. When the waiting room was empty and everyone had left for the day, a nurse asked me who I was waiting to see. After checking the computer and making a few phone calls, she had me talk to the trial nurse on the phone. BAH! That was 6 hours I can't get back. So, now that I'm done whining, I hope to have my attitude adjusted soon. In the meantime, I'm procrastinating making the scan appointment. Take THAT STUPID SCAN!!
On a positive note, the kids and I had a great time at the church picnic. We could not have had more beautiful weather. It was sunny. It was not humid. My kids had their fill of hamburgers, chips, soda, cotton candy, snow cones, rootbeer floats, and roasted corn on the cob and came home high on sugar and crippled with tummy aches. Emily was surprisingly well behaved in church. I was feeling brave as yesterday was the first time I have ever taken her. We sat towards the back so we could make a quick exit if we needed to but Emily sat and listened. She tried to sing the hymms and the psalms and it was so cute I couldn't help but smile. Perhaps Jesus calms her hyperactive little soul. Who knows? I took it and ran with it and made sure she knew how proud of her I was for sitting through it and rewarded her with the moonwalk. She loved it and was moonwalking pretty much all afternoon. Cassie was scoping guys. Kris was waiting to dunk the Pastor in the dunking booth and successfully completed his goal. It was all good and though the parish tried, our Pastor survived the dunking booth and was not drowned. All is well.

Sarcoma Awareness Week Day 2

Sarcoma Awareness Week

I am back from my trip "out of here" and have been in mourning for two days. During my 10 days away, I spent lazy days on the beach reading appropriate beach trash fare, spent evenings reading, walking, or sitting by a fire, dined at local "supper clubs", took a road trip to LaCrosse, Wis, road a paddle boat on the Mississippi River, explored Southern MN, explored a cave, learned about the Amish, drove Scenic Byway 16 through Bluff country, went out for ice cream with the kids, and ignored most media except music. Now I'm back and reality has been difficult to take. This week is Sarcoma Awareness Week. Since diagnosis a little over 3 years ago, I've had many opportunities to talk about Sarcoma with others. As a woman, I've been educated, sometimes OVERLY educated about breast cancer, about Ovarian cancer, about Cervical cancer. Like any good woman, I went to my exams, had my smears and considered myself healthy. Who knew a little tiny bump on my thigh could be cancer? When I noticed it, it frankly didn't occur to me that this tiny dime sized bump could be anything serious and in my many trips to the Dr., I never pointed it out. If I, a fairly educated person, could overlook this, it occurred to me that others could too. I wear my Sarcoma Foundation of America awareness band. I wear the yellow awareness pin with a sunflower from the Sarcoma Alliance and to anyone who asks, I tell them about this disease and the challenges that the patients and caregivers have above the norms that come with the cancer experience including the lack of treatment options, the lack of knowledgeable Dr.'s. the reliance on experimental drugs and clinical trials, and the few centers equipped to handle this disease. I can't do any great big things but all the little things that we all do make a huge difference. My little battle plan is:
1) Keep my Facebook status Sarcoma related for the week. I have 75 friends. That is 75 people somewhat newly aware.
2) Write an email to all my friends about Sarcoma and encourage them to pass it on to others. It seemed to work with Inflammatory Breast Cancer. Why not Sarcoma?
3) Make a small donation in honor and memory of all our Sarcoma friends who have lost their lives this year, to a Sarcoma related charity such as the Jennifer Hunter Yates Foundation, The Liddy Shriver Sarcoma Initiative, or the Sarcoma Foundation of America.
4) Keep talking, keep writing, keep posting the journey. Others may find me. Others may not feel so alone as they battle.

My hopes are that all these little things we do will add up to a cure so we don't lose more of our children, our family or our friends. Fight the good fight everyone!

I was reading Card Blue's blog regarding Vicodin and Percoset and the great Acetominophan debate as chronicled in the NY Times. A Federal Advisory board wants to ban these drugs because a few people a year and it was very few, abuse the drug by taking too much and damage their liver. Perhaps my Libertarianism is just shining through here but has the Federal Advisory board ever been in an Infusion Therapy Room? Have they ever seen what a cancer patient on VAC or MAID protocols looks like? Chemo drugs can potentially destroy the heart, the liver, the kidneys, the immune system and that is considered to be "Good Medicine." As we had a mother in MN recently court ordered to infuse her son with these drugs and abandon the natural, holistic, protocol that she wanted to follow to treat her son's cancer, I am more convinced that more government is just not a good thing. That we, as patients, as people, have the right to make decisions good or bad. Life never came with a guarantee of safety and we, as individuals, were given a mind, a brain, and a reasonable amount of intellect and our lives do belong to us. As Clint Eastwood quipped in Unforgiven, "life is all we have and all we're ever gonna have." Put a warning label on the damn bottle of tylenol and let people make their own decisions. The Constitution never guaranteed us safety. It does guarantee liberty and liberty is the freedom to do something stupid as much as it is the freedom to do something smart. There are just some things, such as people's ability to really do dumb things, that we just can't legislate. We can only hope that my neighbors dumb mistake, does not harm me. As I'm a cancer patient, I know more than anyone that there is no guarantee of anything. Life is uncertain. It is our job to make the most of the time we have as we never know how much time is in the hourglass. For the next couple weeks, I'll be making the most of it by abadoning the city and heading to the woods. Up there, I have no phone, no computer, no TV. There is only music, only trees, only bugs...lots of those, only beach, only quiet. There is no President. There is no Congress. There is no North Korea aiming missles at Hawaii. There's nothing but the hog report and news about where the good fishing is. I will arrive packed with my nutritional tools, a juicer, a hand held mixer, and all sorts of organic goodies that are just not too easy to find in a meat and potatoes area. I will arrive with a few good books to read on the beach and on our porch swing. I will arrive with a nice bottle of red wine to sip at our firepit. I will leave behind Big BOx Mart, Ma Bell and Cancer.

Have a Happy 4th of July and please don't take that Nyquil with a couple extra Tylenol....unless of course you want to.
I'll see you all when I get back, hopefully armed with some beautiful pictures of God's country.

Brivanib Week 24

Stability!!! On the PLACEBO!!!! for 6 weeks!!!!!

Happy news!! I'm still dancing!!!! I love exclamation points!!!!!!!!!!!!!!!

I am going on a vacation next week to our Summer home in the woods. I am happy that I will be going to the cabin without the Brivanib so I can enjoy with a clear head, no fatigue, no light headed feeling other than from my Kombucha :)

My Dr. again left me with instructions to keep doing what I am doing. He can bet on it!!

A minor success!! The Abilify seems to be helping Emily and she hasn't had a major meltdown in a few days. She was so awesome at the party on Saturday, that I showered her with praise all the way home! WE still have some work to do but with some of the fog cleared out of her head, we can work on the behaviors a little more easily.

My stomach is a little jumpy today. Tomorrow, I go through the gambit of tests at U of C, EKG, Blood work and then the dreaded scan results. I'm praying that I remain on the placebo for the next 6 weeks. I'll take the placebo forever if it means nothing grows and I've been been extra mindful of good nutrition the past 6 weeks and really making sure I consume heavy on Omega 3 fatty acids foods, eat my veggies, eat my fruits and juice every day. While grocery shopping the other day, I noticed in the Yogurt section, a drink that was called G.T's synergy, Kombucha, organic and raw tea. As almost nothing in the local grocery store is organic and raw, I put it in my cart and figured I'd give it a try. It contains no sugar, no fat, and billions of live GOOD bacteria. Sooo, I took it home and opened up the bottle and took a swig and crinkled my nose in a big way because it was sooooo sour. But since it seemed to be so good for me, I finished it all and was surprised to find that after I drank it, I felt so light headed and in a way, peaceful. I drank the second bottle and immediately felt that great light headed, airy, floaty feeling and now, I'm hooked, so hooked, I went out to get more. I went to the local Fruitful Yield and found the Kombucha in 20 different flavors!!! I bought some strawberry, mango, ginger, raspberry, citrus, blackberry and so far have crinkled my nose at every single flavor but I just love that airy feeling that is very different from the feeling I get drinking my daily glass of red wine. I know it sounds stupid but I'm getting great probiotics, ECGC which is an ingredient known for its cancer killing abilities, and a nice head rush. In my view, it's a winner.
I really enjoy looking for new good for me things to eat. On Friday, I went to a small, local farmers market that really had very little in the way of fresh produce but I picked up some homemade Hummus that was just to die for. It, on top of the fresh baked bread I bought, was fantastic! I can't wait to head to the market again on Friday and pick up some more. Who says that good nutrition tastes awful? It's a very strange thing...me, who used to consider eating healthy, putting tomatoes on my cheeseburgers, is now focused on nutrition, researches good foods, and has a pantry full of foods no one has ever heard of. THe fact is, focusing on nutrition is empowering. I feel as if I'm acting on my own behalf. I'm doing something for me that my Oncologist cannot do and who says it isn't making an impact? How can it not? I recently read an article on Science Daily that noted the increase in recent years in cases of Ewings Sarcoma. Cancer, in general, is on the rise but Ewings, being so rare, actually has Scientists taking notice. In the same block of studies, I read a study that the food we eat is becoming less and less nourishing as the nutrients have been processed right out of it. We are eating dead food that may quell hunger but does little to actually feed the cells. Why would that not have an effect on the rise in cancer? When I am asked about my own journey and mention use of nutrition, often I am looked at with the same expression as one looking at my pantry..WHAT IS THAT?? And they tell me I'm spreading some mumbo jumbo, hocus pocus, that makes no earthly sense. Obviously, I missed the memo that Chemo is the only thing that acts on cancer cells. I don't buy it. I will keep drinking my Kombucha, sprouting my Quinoa, and juicing that Kale.

UGH! A lousy morning with Em. It started with a 3am temper tantrum and continues with hitting, spitting, shouting, yelling, poking, prodding, terrorizing and continually driving me nuts. WE are supposed to go to a grad party today with her. I am so concerned about her behavior, I'm considering finding a sitter so no one else has to deal with her sucky behavior. The Dr. wants to try her on Abilify to calm her down so she'll be more apt to listen. I was on the fence about it. Not anymore. As she did not let me sleep much last night, I'm exhausted this morning. It's going to be a long day.

Yesterday, I took Emily to the Psychiatrist to check on her medication. For those not familiar with my spirited little daughter, she was diagnosed last year with ADHD and possibly ODD (Oppositional Defiant Disorder). Life with Emily is not easy. She is moody. She is stubborn. She is prone to hysterical fits of rage that last for hours if she is given the chance. Her needs for constant attention, cause her to purposefully annoy others by poking them or jumping on them or doing things to intentionally incite a negative backlash. My words cannot adequately express what we have gone through, the frustrations, the tears, the anger. Despite the fact that I know Emily cannot help it, sometimes I lose my cool with her. As there is no male figure here other than my 16 year old son, it is just me who has intercede, quell tempers, and restore peace and light to our home. Realizing we all needed help, I started bringing Emily to a behavioral therapist last November. It took barely any time at all for the BT to see the less joyful side of my daughter and she was quickly referred to a psychiatrist for an eval. Em was placed on Strattera which did some good but as time has gone on, it was noticeable to me and many others that there was definite room for improvement. So, the Dr. prescribed Prozac. No effect. After a particularly bad Monday that resulted in my 14 year daughter calling me in tears after watching Em for 10 minutes while I went grocery shopping, I was hoping for some answers yesterday. The drugs aren't working! THe prozac did nothing! Her behavior is still out of control! We need help! Her psych asked me to describe her behaviors and I did. He said, medicine won't fix that. That, YOU have fix. I paused.. Me... I forgot that I have a part in the healing process, in her healing process. THe Dr. is a human being who can only base his advice on what has been proven and tested and this is not a bad thing. But, we as patients can rely on what WE know. WE can fall back on our own experience. We can look at the anecdotal evidence. We can take into account the experiences of others. We can look at the improbable. We can take part in our OWN healing. In the cancer world, my Dr. is only concerned with the tumor and that is in fact what he is treating. It is up to me to treat my spirit, my soul, and the cells that are NOT cancerous. This is where MY power lies. I cannot wait for the Dr. to prescribe for me the magic pill because it just plain does not exist. There are some things that I have to fix. There are some things that I have to change and there are some things that I have to do.

The cure of the part should not be attempted without treatment of the whole. No attempt should be made to cure the body without the soul. Let no one persuade you to cure the head until he has first given you his soul to be cured, for this is the great error of our day, that physicians first separate the soul from the body." PLATO

I can change my attitude and how I deal with my problems.
I can change what I eat and make sure that everything I put in my mouth is healthy and is nourishing. A bag of chips satisfies hunger. It does not nourish.
I can change my focus.
I can change how I spend my time, more work? or more family time?
I can simplify my life and reduce as many stressors as possible.
I can change my sleep schedule and make sure I get enough.
I can see the good side and not the bad.
I can do many things....what I can't do, is give my Dr. all the power to heal me.

Emily's meds help to a point. The rest of her healing.... she and I have to do.

It's hot!
Chicago is known for its volatile weather patterns. Two weeks ago, I heard lots grumbling that it was cold and wet. Then a warm front came through and it is now 94% with at least 85% humidity. This has tossed a crimp in my walking schedule. I have never been much of an excerciser and it's not that I don't like it. I just can't stand the feeling of being sweaty. I have tried to refocus. Sweating is detoxifying. The whole purpose of a sauna, and we have a natural one outside now, is to sweat away toxins and rejuvenate. My re-focus didn't quite work as I had hoped but I did go out and subject myself to the torture and because I was feeling I needed a little additional punishment, I brought Emily along. My thinking was, Emily is hyperactive. What better way to burn off all that energy that take her on a nice walk. Well that blew up in my face. Emily walked a block and then she was complaining she was tired. She plopped down in the middle of the sidewalk and refused to budge. I walked on. She caught up eventually. In true ADHD fashion, her brain was all over the map. See mom, I"m walking..oh hey, is that a dandylion? RUN RUN TO CATCH UP TO MOM.. OH LOOK! CLOVER!! I'm HOT! I'm thirsty! I wanna go home! I don't wanna go home! YOu're walking too fast! You're walking too slow!! .......Sigh... I will leave Emily home unless it's a walk to the park. Today, as it's close to a 100 degrees with the heat index, I'm postponing my walk until sundown. I blew it off all together yesterday and feel a leeeeetle guilty. But uck! IT was just plain sauna-ish out there and I did not have the luxury of time for a shower after I sweat profusely.

CT scan tomorrow.. BLECH!!! Will it be good news? Can I go three months and remain stable while on the placebo? I sure hope so. I don't feel any worse than I did 6 weeks ago. I even feel a little better with more energy when I'm not tired from all the late nights working I've put in lately. But, I'm still nervous. I hate scanxiety. Results on Wednesday. In the meantime, I'll enjoy a nice weekend and enjoy my days in The Matrix.

On Saturday, I was only scheduled for a 4 hour shift at my second job for a large retailer. This is an oddity and I was so excited at all the possibilities. What can be done with that extra 5 hours? Do I go shopping? Do I mow the lawn? Do I clean the carpet, sit on my butt and watch Lifetime movies? What? I opted to clean Cassie's graduation party and Emily's birthday party out of my carpet, go to 5pm Mass and take the older kids to see "UP" as Emily was off with her dad this weekend for Father's Day.
After I scrubbed out the spilled wine, the green frosting, bits of grass, crumbs, mustard, ketchup and the Spring round of cat yak from the LR carpet, I rounded the kids up for Mass. Of course, my kids were whining. I am a 16 year alum of Catholic schools. Religion was as much a part of my young life as air. Sadly, I fell away from the church and never properly taught my children. Life got in my way and I was half asleep, sleepwalking actually for a few years. The universe woke me up with a nice hard slap on 2006, when I got "the call." What I did not know when I entered the church Saturday, was that this was a special mass. The associate pastor was leaving to be pastor of his own parish and the Knights of Columbus, all the deacons and church personnel were sending him off in style. His last speech to the congregation was based on a gospel. Jesus was in a boat with some of the apostles. A storm came on suddenly and tossed the boat around, waves breaking over the side, and peril all around. The apostles found Jesus asleep down below and asked him how he could sleep when their boat was in such danger. Jesus woke up, asked them why they did not have faith and commanded the sea to be still and the winds to quiet. The lesson: during the roughest times, when it seems as if you have been abandoned, when you're screaming at GOd and wondering why he does not seem to give a crap that you're hurting, that you're suffering and that He seems to be asleep, remember that's He's in the boat with you the entire time. Hmmmm.... I am one of those people that looks for signs and believe that nothing is arbitrary. I believe every person that enters my life in some way, shape or form, has been sent for a reason. Perhaps they are friends, or support circle, or teachers but all are meant to be in my circle, even the antagonists. I've also been feeling sometimes, that I am walking a tight rope without a safety net. When the priest finished his speech, I wiped away a tear or two. I felt that this I was meant to hear this, to be there, to be part of the good bye party, and the festivities in the church basement that night. I also left feeling that this choosing this church and church community, was the right decision and the right Parish for me. In the Fall, the kids start the Confirmation process. I have been kicking around joining the church choir, something I loved doing as a youngster. My voice has been virtually unused, other than belting out with some CD's in my car at times and I always felt this little tug steering me in that direction. I need to change my work schedule at the second job just a little to accomodate the 11am Mass but that should not be too hard. In the meantime, I'll practice by belting with more CD's. We have a 4 hour trip to Wisconsin planned in a couple weeks. What better way to pass the time, than annoy my children with my rendition of "Don't Cry for Me Argentina?" They'll love it! NOT!!!

I go a walkin....

Yesterday, my five year old daughter, said "Mommy, you're getting a little bit fat." Thanks a lot! "Just a little bit", she said as she held her thumb and forefinger together. To be honest, this is nothing I didn't already know. I'm not up a size after the long Winter but some of my clothes are just a weeeee bit too tight. The other day, I had to lay down on the floor of the bathroom to button a pair of jeans. Though I eat mostly greens and fruits, they still have some calories and me being an out of shape office worker, I excercise my index mouse clicking finger and not much else. As a matter of fact, I've excercised my mouse clickin index finger so much, it became swollen and sore. So last week at the Dr. office, I asked my Oncologist if a little mild excercise is OK. Of course it is! Running is out of the question. The tumor was located in my upper thigh/lower pelvis. When the Dr. removed the baseball size sucker, it left a huge huge hole. TO prevent my organs from falling into my leg, the Dr. installed some mesh which is screwed in to my hip bone. I also lost one of my quads, numerous lymph nodes, and a nerve. My right thigh is numb and I also have lymphedema so I have to apply compression to manage swelling. WIthout my quad, my right leg is not as flexible or strong as the left. Running or jogging is no easy feat. So, I have decided to start walking. Seems easy enough, a nice brisk mile walk. The first time out was not too bad and consisted of a simple mile walk to the park. Then, I stepped it up a bit. I walked through the neighborhood, enjoyed the sunshine, looked at flowers, landscaping, watched kids play, counted houses that were on sale or abandoned, looked at airplanes overhead and people watched. I arrived home sweaty but felt OK....until I sat down, did some more work, and stood up again only to experience achey muscles, especially in my calves and challenged leg. In the evening, Emily wanted to go to the park again. So I figured, what the hey and walked another mile, 2 miles round trip. My challenged leg was screaming at me by the time I got home. I had a one day reprieve due to rain but went for a nice brisk walk in between grocery ailes and worked my retail job so I did not feel too guilty. My next time out was more of a challenge because my muscles were achey, tight and sore and yelled at me. Just to spite them, I took a different route and did about 2 miles maybe three. Arrived home sweaty and hot. This time, my stomach was knotty and I could feel lots of heat radiating from my skin. I took a nice long shower and sat down long enough for my muscles to tighten and complain at any movement. Holy Moses! I did not realize how out of shape I am! I feel like a total wimp! They are lucky it's pouring rain today or I would go do 4 miles. THat'll learn em.
My hopes are that by the end of the Summer, I won't have to lie on the floor anymore to get those jeans buttoned and that I'll have more flexibility and strength in the challenged leg. Despite the pain, I feel I did something good for myself and am now trying to come up with different routes so I can see different things and maybe add a few more hills and dips to affect each whiney ol muscle so there is less whining and more strenghtening. My mere three days out has resulted in subtle changes, less bloating around the middle, more trips to the bathroom, a little more energy and slightly less Lymphedema swelling. I'll keep it up. My brother has a 5 mile walking route that he does at our summer home. This will be good training to accompany him. I absolutely cannot wait!!

Prayers for Elsa today as she undergoes her 9th sugery for recurrent Liposarcoma.

The weekend was quite eventful
For the first time in maybe 5 years, I headed downtown to enjoy the Chicago Blues Festival on Friday. The Sun was shining, an oddity. It has rained 11 out of the past 18 days and has been unseasonably cold with temps in the 50's. Last year at this time, I was dealing with 92 degree weather and a broken Air Conditioner that led to a nice bill for a new A/C which I am happy to report is not needed thus far this year. My brother and I decided to avoid the Friday Rush Hour traffic and head down on the El. It's been awhile since I've written the famous Chicago Elevated Railway or EL as we fondly call it here in the Windy or not so fondly if you're a regular rider who has seen it all on the train. It was a part of my daily life when I lived in the old Bucktown neighborhood for a year. I caught the El at California and Milwaukee in a neighborhood that would scare most people and rode it downtown to Jackson street close to my job at the old Berghoff Restaurant. (I am in one of the historic photos on their website) In the morning, it was full of commuters. At night, it was full of homeless and a few drunks who I was one of a few times. As it had been awhile, I looked and acted like a tourist, unaware of the new El process. I used to buy a token from an actual person who barely looked at me and sounded like a robot when they asked me if I wanted a transfer. Now, I had to use a machine that gave no change, for a little pre-pay card that needed to be put in a slot. I, of course, looked like a fool because I couldn't get the card in the slot in a way that it would register. In the old days, a conductor, who sounded a little bit like Charlie Brown's teacher, announced the next station. Now, a computer voice let me know every 5 seconds that I was on the Blue line from O'Hare, the doors open on the left, the door will open, the door will close, the next station is .... and exit stage left because the train is on fire.
Traditionally, we have had very good times at the Fest. This year did not disappoint either. It managed to go off in between raindrops. The weather was comfortable. The skyline was striking. The music was great and the highlight was meeting up with an old friend that I haven't seen since I was 15. She found me on Facebook. I spend about 5 minutes on Facebook daily but it has brought me back in touch with people I have not seen in ages and has brought new friends into my life. For that, it was worth the free admission charge.

I took some pictures at the Fest but can't post them yet. I bought myself a nice little digital camera last year as a Christmas gift to myself at the same time I bought my daughter a digital camera as a Christmas present to her. Hers was a Kodak like mine but it was a different model. I bought a USB cable to upload pictures and a charger figuring that it would work for both. I recently took my camera out of the box. Yes, I'm aware it's been over a year but I am just as good a photographer as I am a gardener. Much to my dismay, the USB cable and the charger do not fit my camera. DOH!! And BOOOO to Kodak for this ridiculous development. And BOOO to me for not being savvy enough to notice. Nickels and dimes....

Prayers for Michelle today as she goes through another surgery. I am praying for success and a drug for her that will do in the rest of those pesky tumors. I'm raising a glass of green juice in toast that it really is her turn to kick Sarcoma butt!

I'm also asking for prayers for 14 year old Derrick, a 14 year old MPNST patient who was placed in Hospice care two days ago. My arms are around him and his family in spirit and in prayer. I hate this cancer. I hate that it is one of the more common forms affecting children. I hate that no one in the drug development world cares about it and neither do big charity organizations like the American Cancer Society. Don't get me wrong. The ACS is a great organization in the area of patient support and they do donate millions to cancer research but almost none of their dollars go towards Sarcoma research or into any of the rare cancers. I worked two Relay's and enjoyed the experience. I had the opportunity to share the challenges that are presented to those of us who fight rare diseases when I was asked to give the Survivor talk last year. But, after some thought, I decided that my energy would be best served promoting education and research for Sarcomas. THe rarity of the disease warrants every loud voice in protestation, in education, in soliciting research dollars, that we can get and I can be very very loud.

In honor of my inspirations, Maura DeSouza, Amber, Derrick, donations will be made to a Sarcoma charity such as Jennifer Hunter Yates Sarcoma Foundation, The Sarcoma Foundation of America, The Sarcoma Alliance, or the Liddy Shriver Sarcoma Initiative. The best way I could think of to honor their lives and mourn their loss, is to work for a cure. For the rest of my Sarcoma friends still fighting, for the caregivers, family and friends who have supported us in our journey, I am making way for a rose bush somewhere, probably in the front yard. I believe that the roses will be yellow, the color of our awareness ribbon, the color of friendship and comaradery. Peace all.

Hurry up and wait!

The three week check up came and went.. It was typical. I worked until Midnight on Tuesday to get some work out of the way then woke up early to work some more before I had to leave for my standing appt. I waited in bad traffic due to pothole filling. Once I got to the U of C, I waited for the hospital vampires to take the blood. I waited in the waiting room to have vitals taken. I waited in the Dr.'s office and then waited in bad traffic on the way home on Lake Shore Drive AND the Eisenhower expressway. Due to Blues Fest, a thoroughfare was completely shut down but whatever. It was a nice day and I enjoyed looking at the Lake. Rule one for any cancer patient, be prepared to wait. Never go anywhere without an engaging book to read, crossword, a craft or something to engage the mind for the average wait time is around an hour. Sometimes, I size up other patients waiting with me. Some are knitting. Some are sleeping. Some are pacing back and forth. Some are talking on their cellphones. Oncology is a busy place and chairs are set up in the hallway to handle the spill over of people waiting. We cancer patients can think of 2000 things we would rather be doing. Time is precious.

That said, my bloodwork was fine. BP was fine. Heart rate was fine. I was released to my own devices. It's time to schedule the next scan. I hate hate hate scans but, after this scan, I go to a every 3 month scan schedule instead of every 6 weeks. Whatever will I do without the monthly dose of Barium? It just gets nastier every time and I find I drink less of it. It gives me a tummy ache and I spend the day running to the bathroom. Sometimes, the tech surprises me by making me drink another cup before hand. NO FAIR! WHen that happens, I feel sacked. But, I'm a good sport and drink it after shooting the tech a look when they are not looking. Immaturity can be fun.

This weekend is chock full of activity: Blues Fest, work, grad party, maybe some sleep. I haven't yet decided. There is not time however, for waiting.

What a weekend...

The party went off despite all the last minute running around. The weather was not exactly cooperative and my nice backyard unfortunately was wasted but the burgers did not get soggy from the rain and I didn't have that many left overs to find room for in my overextended fridge. There was some drama as can be expected when teenagers collide but there were some laughs and some good times. Thank you to all who travelled the miles to be here. Your presence was much appreciated and despite the weather, the party was a success. One of my friends pointed out that she did not remember getting an elaborate ceremony or graduation for 8th grade but here in the Land of Lincoln, we acknowledge this Rite of Passage. For some of the kids, it's the only graduation they will have. To my daughter, it was a huge deal because the social life is EVERYTHING. When my son graduated, he was vaguely aware of it but it's different for girls, especially when the girls BFF graduated high school this year and her excitement over Pomp and Circumstance affected my daughter.

Now it's back to reality and I will celebrate reality with a nice trip to the U of C tomorrow for the 3 week check up. Oh yay.

Grades will be coming this week for the kids. My son is a little nervous but the year is over and hopefully, he will really put the pedal to the metal next year. He did manage to acheive placement in the UBER band next year and is interested in trying his hand at Jazz. The graduate received a 4.0 for the quarter and a 3.9 GPA for her two years. SHe received two academic awards and is nervous but excited about her high school career. I am just worrying about the Summer. I cannot wait to attend the CHicago Blues Festival this Friday where I will meet a friend I have not seen since grade school. We met up again on Facebook. I have three invites to grad parties. I will be attending the Independence Day Tea Party on July 4 after which I will be trekking up to Wisconsin to spend a WHOLE TEN DAYS AWAY from Ma Bell and Big Box Mart. I will attend one glass show to satisfy my glass lust. My china cabinet is just getting way too full. TIme for a new one of those. Whereever shall I put it? I am getting my bathroom done and will start the proceedings for a bedroom remodel.
I have no time for Sarcoma so it just better behave.
Here's to a good Summer!

The graduate and the goofy brother

Cassie's Graduation Day

Tonight she walks. Last night, she introduced me to this song, her official graduation song, "You're Gonna Miss This" sung by Trace Adkins.

She was staring out that window, of that SUV
Complaining, saying I can't wait to turn 18
She said I'll make my own money, and I'll make my own rules
Mamma put the car in park out there in front of the school
Then she kissed her head and said I was just like you


-Chorus-
You're gonna miss this
You're gonna want this back
You're gonna wish these days hadn't gone by so fast
These Are Some Good Times
So take a good look around
You may not know it now
But you're gonna miss this

Ahh teenagers!

Yet another page from "My mundane life" follows...

It is coming down to the end of the school year. Cassie's big graduation is in two days with her party this coming weekend. Kris has exactly 3 days to pull his grades out of the trashcan or he faces grounding for life. As my son is last minute Charlie on most things, it did not surprise me that my son opted to wait until the last minute to complete two school projects. One, an extra credit for Physical Science, required him to make a house out of spaghetti which was due last Tuesday after the holiday weekend. As I had Monday off, I spent the majority of the day running around getting food and balloons orders for Cassie's graduation party. My son spent the majority of the weekend ditzing with his friends and at 7pm on Monday night after I had already been to three stores, informed me that he needed spaghetti and a glue gun. Off to the Big Box Mart I went. After having spent all weekend there and a significant part of MOnday buying supplies, I was more than a little annoyed that he didn't bother to mention that he needed these things earlier. He began the project at 9pm. It took him half an hour to burn his fingers with hot glue which resulted in 30 minutes of walking around holding his burned finger and cursing under his breath. He stayed up until 3am, forgot to set his alarm, missed his bus and then tried to tell me he was *cough *cough sick and needed to stay home. That didn't fly with me and I deposited him and his spaghetti house at school. Fast forward to Friday. It's one week to party time and I was trying to get the house in some sort of order. I spent Friday spot cleaning my carpet which was pretty much one big spot and it took me hours. Kris wanted to go see his friends band play and promised that if I let him do that, he would finish his chores over the weekend. I really am stupid. I took him up on his offer. Saturday night, after work, I took the family out to dinner to celebrate Kris's birthday. We had a really nice time and didn't leave the restaurant until after 10. On the way home, my son informed me that his band was playing at the graduation ceremony the following MORNING AND he had a project due Monday which required two rolls of Duct Tape. WHAT???? I yelled at him while he insisted he told me about all this. He insisted he DEFINITELY told me about the graduation but admitted he may not have mentioned the exact date. GRRRRR! I had to work at BBM at 9am on Sunday and somehow had to get him to the high school to meet the bus. And of course all those chores that he promised to get done, did not. Sunday morning, as I was getting ready for work, I heard Kris's alarm go off at 7;30. He shuffled upstairs to take a shower and asked if I thought the neighbor was up because he needed to borrow a tie. I was at BBM on Saturday and reminded him, I could have gotten that tie then or at any of the other 10 times I worked my retail job in the past few weeks. So, finally after some scrambling around, we left to drop him at the high school so he could catch the bus to the graduation. We entered the parking lot and there was nary a car or any signs of life for that matter. I waited in the van while Kris went in to see if anyone was in the band room and sure enough, it was locked tight and not a single soul was in the high school at all. I dropped him at home after a few stern words. THe nickel and dime-o-meter was at a high and getting higher. As I spent all day yesterday working, I failed at motivating my kids to do a darn thing around the house. I still have a few errands to run. It's going to be a long week.

Last Thursday, another one of my inspirations, died.
She was 14.

When I was first diagnosed with Sarcoma in 2006, my first inclination, as it is with so many others, is to hit the internet and research and read. What I found were clinical journals, papers, research articles, and personal opinions written by Dr's in medicalese that quantified the disease, measured it and spit out a Mathematical analysis that was far from encouraging and far from inspirational. I found 100,000 articles on how to die of Cancer but what I was looking for was a human story about how to live with cancer, how to fight it, how to stare in the face of the unspeakable and live each day. I found the story of a then 11 year old girl who was diagnosed with Stage 4 Ewing's Sarcoma and dared to go to school, learn crafts, celebrate good scans in DisneyLand, play computer games, fight with her little sister and maintain a space on the web that celebrated the opportunity to Live Each Day. I was just a voyeur but this little girl became a part of my every day life and I thought, if she can, I can! I regret that the only contact I made with the family was to write a condolence on the loss of someone so young, their child for Chrissake and despite the fact that I never met her, I felt a profound loss at her passing, cried real tears and felt as if a member of my family died. But underneath the sorrow was also a profound GUILT. She was 14 and should be going to her 8th grade dance and chattering about graduation. She should be kabitzing on Facebook and shopping for clothes, comparing make up tips, and looking forward to High School and her FUTURE. I am 41, have done more sinning, had opportunities to cause pain and grief on my family and friends and right now, I'm OK. With every death, especially of one so young, I have so much trouble resolving this in my own mind. I know I can never understand WHY and so I look for some meaning in my own life and try to determine what good I am doing with my journey. Do my words offer hope? Is there someone out there recently diagnosed with Sarcoma looking for someone LIVING with this disease? I don't know. But I do know this, my presence in this clinical trial, might result in one more treatment option for a person with a nerve sheath tumor. By saving myself, I stand to save many others diagnosed with this subtype that is notoriously chemo insensitive. My success with this drug could potentially indicated success for 1000's of others. My blogging could give hope to the hopeless and with every patient I talk to, I have the opportunity to support many many others. Perhaps the meaning in my journey, is for such a time as this.