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!!!