Tuesday, September 29, 2009

Life has been busy this week!
I have forwarded in that application for the CNA class and paid the application fee. I got a call back yesterday to expect a letter confirming the orientation date and the kids have been briefed on protocol while I finish this class. Big Box Mart was pretty accomodating so all is a go. I filled out my FAFSA and of course am not eligible for a shred of aid but I knew I wouldn't be. As the FAFSA does not take into account things like mortgages and medical bills, I'll be writing a letter to the college financial aid dept explaining special circumstances.
To celebrate stable scans, I took the kids out to their favorite Chinese restaurant and allowed Kris to drive. We then went shopping at the health food store and Barnes and Noble for the novels they are reading this year. Kris will be reading "THe Catcher in the RYe" and "The Great Gatsby", two I really enjoyed. I majored in Psychology and English in college and read LOTS of books. I found that when real life hit, I couldn't read as much. Two years ago, my New Years resolution was to read more. I won an auction on EBAY for 40 Oprah Book Club selections and have been slowly working my way through the pile. "Fall on Your Knees", "She's Come Undone", and "Songs in Ordinary Time" were excellent. I would also recommend "God of Animals". As an aside, my daughter recommended the "Twilight" series. As my daughter never reads, the fact that she would recommend anything was a big surprise. I finished Twilight in 24 hours and fail to see what the fuss is about. I couldn't stand, Bella, the protagonist and Edward was too perfect. Maybe books about spoiled, bratty teenagers aren't high on my list especially when the novel had no discernable plot, was predictable as the day is long, and flowed like a rocky stream. Nevertheless, I read "New Moon" and made it 3/4 of the way through "Eclipse" before I put the book down. When I wished Bella would get eaten by the baddy vampiress, Victoria, I knew that it was a lost cause. Please Edward, get killed by the Volturi and spare us the agony of having to read this drivel. Join Anna Karenina by throwing yourself in front of that train! I am good about keeping my opinion to myself when giggling teenage girls bring those Twilight posters, books, pins and tee shirts through my checkout line. I am currently reading a book called "Drowning Ruth" ....MUCH MUCH better!
Saturday night was Homecoming and both kids decided to go stag. Kris decided he'd have much more fun with his friends and Cass went with her friend Angela and Angela's boyfriend. While they were out dancing, my brother and I went out for dinner and then downtown to see a friends band play at a dive bar in Chicago. This bar is what one envisions when the words "dive bar" are strung together in the same sentence. The bar stools were so old, the seats slanted and I had to prop myself up by putting both legs on another bar stool. The woman's bathroom had no lock. The door handle was broken and swinging loosely. Someone had installed a hook but, there was no ring installed so the hook was essentially useless. I tried to use the bathroom, I really did but I just couldn't do it. I went back to my slanty bar stool and opted not to drink anymore fluids while hoping the bladder would hold out until we got home. I can only laugh at the experience and smile that my brothers friend is a different person when jamming on his guitar.
On Thursday night, the children pulled two kittens from our front bushes. A mama cat had a litter of 4 kittens that she has been moving from house to house in her little territory. Last week, we rescued one of the kittens from the woodpile across the street and my neighbor, gave the kitten a home. Mama had been in the process of moving the litter and my bushes served to be a home to her last week. The children were able to get two of the remaining three. Mama cat grabbed the little calico and ran with her and in my basement right now is an orange tabby with white feet and a white cat with dark gray spots, one female, one male about 6 weeks old. We had originally thought to drop them off at a shelter but none of the shelters are taking kittens or any cats at all. Sooo, they have made themselves quite comfortable in the spare room. The first day or so, they hid but it's amazing what a bonding experience food can be. Now, they have names. The orange tabby is Lizzie and her brother is Louie. Lizzie is the sweetest most affectionate little kitten and just loves to sit on laps and be petted. Louie is all over the place and both are separated from the other three cats who aren't always welcoming. My son is upset with himself for bringing them in because it's obvious that they are now our cats and as I'm financially challenged, he was concerned about the added expense. As the wind is howling outside and the temperature has dropped about 30 degrees in two days, I told him he did a good thing and the kittens will be cared for and won't be outside having more kittens. Lizzie thanked Kris by crawling on his lap, cuddling in and purring. We are suckers all the way around. They had their first trip to the vet yesterday for deworming and an exam for Feline Leukemia and Feline Aids. Lizzie had stopped eating Sunday night and needed fluids. Both are in good shape.
That is all the news.
Today is my birthday and I will spend it working both my jobs. Emily is obsessed with my age for some reason and asks constantly how old I am. Last year, I told her I was 22. As Emily thinks anything older than 10 is ancient, so she bought the story hook, line, and sinker and tells all the neighbors mom is 22 years old. I love it :) The kids and I plan to have a birthday celebration the weekend before Halloween as it's the only weekend, we don't have plans already. That's all for this "my mundane life" update.

Tuesday, September 22, 2009

Scan results

still stable....
Now I am officially on that quarterly scan schedule and have added that news to my list of things to celebrate!
As I was complaining about the taste of that triple berry smoothie, Sue G was kind enough to mention that if I thought the triple berry was bad, wait till they hand me the banana or apple joy. Obviously, the hospital was on some psychic schedule with Sue and handed me the banana. Thanks Sue!

Last Tuesday, I had an appointment with a student advisor at the local community college. We had a great meeting and I was handed loads and loads of information about classes, pre-req's, scholarships and grants. I need to be a CNA and take Anatomy, Physiology and Algebra then take the NLN. I have been searching frantically for a CNA class that would satisfy the school requirement that I take the State licensing exam and be placed on the registry. Classes this semester at the community college are full but I had my name on a list for the Americare Institute's classes offered in October. My goal was to have this done before the Spring Semester as I am still working full time. Unfortunately, Americare only offers classes during the day and with a full time schedule at Ma Bell, that didn't work. I was disappointed with this news and decided that maybe I can buy extra vacation days and take two classes during the Spring semester. But, through chance, I found another vocational school that offers CNA classes at different times of the day. The paperwork has just been faxed and I stand to be very busy from Oct 26 - Dec 15 but I can then focus on the Anatomy class during the Spring and Physiology during the Summer. I am excited to start! This CNA class meets M-W from 6-10 with 5 clinical sessions on Sundays. I predict that I'll be going "gas can" on the kids more often than not during those 8 weeks.
As I was driving home today, I was just immersed in guilt, survivors guilt. I am extremely happy about the results of this trial so far, though I think I will forever be holding my breath. But I can't help thinking of those that are not quite as lucky. In my Sarcoma community, I see so much suffering in adults and children. The Liddy Shriver Sarcoma Initiative motto "Sarcoma knows no borders" aptly describes this disease but children seem to be hardest hit. Right now, I know of 3 children under the age of 18 that are home on Hospice with no options. I know countless others, mothers, fathers, grandparents and college students living with horrible pain. Right now, I'm lucky. It's a gift but not one I feel I deserve sometimes. I can only drive forward and try to make my life mean something. I feel very strongly that this is the way to go...

Sunday, September 20, 2009

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..

Monday, September 14, 2009

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.

Thursday, September 10, 2009

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.

Tuesday, September 08, 2009

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!

Wednesday, September 02, 2009

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.

Tuesday, September 01, 2009

Another good idea for Childhood Cancer Awareness Month


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


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.