Saturday, August 29, 2009

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,

Wednesday, August 26, 2009

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.

Monday, August 24, 2009

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.

Thursday, August 20, 2009

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...

Wednesday, August 19, 2009

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:

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:

Monday, August 17, 2009

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!

Tuesday, August 11, 2009

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

Sunday, August 09, 2009

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.