School and how to help a cancer patient

All children have officially returned to school today and as I type this, I am sitting in perfect and peace and tranquility! Emily started the first grade! She has been excited for WEEKS and was completely and totally consumed by getting ready. We went clothes shopping last week and school supply shopping as well. She rummaged through bags of supplies asking what was hers and also trying to take things from the high schoolers as if she needed a composition book and college ruled paper. But, she and I spent Monday night packing her backpack, making her lunch and choosing her outfit for the first day. In the morning, she was too excited to eat and absolutely unfocused as to what she should do first. Even though school didn't start until 8:30, she insisted that we leave 40 minutes before the bell and so we stood in the parking lot listening to the crickets until the bell rang and she was ushered off to class. Today was not quite so smooth as she has been throwing major temper tantrums and has been absolutely impossible to deal with. Though she is excited about school, she isn't used to her routine. Yes, I understand that transitions are hard for her but this morning, I was ready to drive her to her dads and say HERE! It took her 30 minutes to decide what to wear. I tried to have her do this last night but she was absolutely not going to budge on the issue as she wanted to wear a specific pair of jeans and we couldn't find them. So it was a bloody battle this morning. She refused to brush her hair, brush her teeth, pack her lunch in her backpack, put on shoes and when we did put on the shoes, she didn't like the way I tied them and pulled off her socks and shoes and threw them or eat her breakfast. It was not fun. Emily has ODD, oppositional defiant disorder. This along with her ADHD, means I deal with periods of temper tantrums that would try the patience of God, defiance to the Nth degree as she absolutely REFUSES to do anything and as she cannot calm herself down, she throws things, punches, kicks, and slaps. I will admit I have lost patience with her and the past 24 hours has been extremely difficult for all of us. It will die down as she gets used to the routine and I have failed time and time again at restoring order and control when she is out of control. It's hard NOT to react and extremely difficult to be proactive. We try but we are human.
Physiology started up on Monday night. I HATE the section I'm in. MW lecture, Tuesday lab. YUCK! I would prefer to have the lab before or after the lecture period on MW but nobody wanted this section and when the teacher asked who would like to switch, only those with Tuesday lab stood up there. Hence the reason it was the only section open when I registered. But, at least I got the class and my instructor stated if there were conflicts, she would allow us to switch a section for the week. My Oncology appointments on Tuesdays are the only conflict at this time as I still am unemployed.

A few days ago, I had a conversation with a relative. As a cancer patient, I hate conversations like this one. If you are a cancer patient or relative of a cancer patient, avoid this please.
Relative - "So you think you might have surgery in December?"
Me- "Yes, that is the plan provided that there is nothing new on this next scan."
Relative - "What are you going to do about the kids?"
Me- "I haven't figured that out yet."
Relative - "Are you still looking for a job?"
Me- "Yes, haven't found anything though"
Relative- "What are you going to tell an employer about the surgery? Is it because of that that you can't find one?"
Me- "I don't know. I usually don't mention my medical issues in an interview and I have no idea what is going to happen or even IF there is going to be surgery."
Relative - "Well what are you going to do about Unemployment? What if you have surgery and you can't collect any? How are you going to pay your bills?"
Me- "I don't know."
Relative - "Well what are you going to do about the house then?"
Me- "I don't know."
Relative - "Well don't you think you better figure that out."
Me - "Well obviously, I'm going to lose the house to a foreclosure an we're all going to live in my van." (Yes, I did say this)

By this time, I wanted to hang myself. I was increasingly frustrated because though this is a person that is local, I was never asked what she could do, what SMALL thing that could be done to help me out. After I collected myself, I said, "I don't know what is going to happen. I can't plan for something that may or may not happen in 3 months without the scan, without a surgical date, without a battle plan. But you CAN help me by telling people about my book and DVD store. That would help." She said she'd pass the info onto her family and friends.
I went to bed feeling very uneasy. So many loose ends to tie and I know she's well meaning but "What are you going to do?" is not a helpful question. If there is someone in your neighborhood going through something like this, here is how you can help.
-- Bring a meal. Cancer patients and anyone going through chronic illness get tired. Dr. appointments take time, LOTS of time. I know even though I feel healthy, each Oncology appointment takes a minimum of 6 hours before I'm done with the labs, the waiting and the traffic. Medications cause nausea and fatigue. Being around food when nauseous is very difficult. Meals help a lot.
-- As one of my relatives dishes on the condition of my house a lot, see above. Even offering to weed a garden is a HUGE help as is helping with any household chore.
-- If there are children involved, offer to take them somewhere with your kids. Speaking for my kids only, there are a lot of unresolved issues. I have 2 very scared children who prefer to deny the existence of the disease because it's too hard for them to look at. Kids with a parent who is ill live with constant fear that that parent will die. The feel helpless, powerless, fearful and apprehensive for the future. As a single mom, who is going to be there for the kids is the NUMBER 1 concern. I go to appointments and things by myself. IF this surgery takes place, I need to know they are safe and cared for while I can't do it. Any patient, irregardless if they have a husband or other family member will tell you that the kids are their main priority. If there is someone in your neighborhood with these issues, that is the number one thing that can be done to help them.
-- Don't avoid talking about the disease. We want to talk about it. It's OK if you don't understand 100% what we are going through. An ear is good enough and we don't expect you to understand.
-- Don't give us YOUR fear or back off because of you. Cancer is not contagious. Most don't like to hear unpleasant news. It brings a person closer to facing their own mortality and we face that daily and we figure out how to live with that. Your fears on top of our own is a big load to carry.
-- Never ever ever imply, hint, or outright say that the person with the illness is a burden. It is difficult enough to have to ask for help. We don't need to be reminded what a big encroachment it is on your life. We didn't ask to be sick. It's not our fault. Cancer is not a disease that affects just ONE person, it affects everyone that knows that person, cares about that person or is related to that person. That is the sad, sad, reality. We are bombarded by societal messages daily that if you are sick, you are weak, you are useless, you are an expense on society. We don't need to hear it from you. This can happen to ANYONE. The value of life, any life, irregardless of disease, cannot be measured or thought of on monetary terms. No one is a burden because they are sick.

Now for the shameless plug:
The biggest help to me right now is to keep my web businesses in mind when you need anything. If there is a product you are looking for, please consider ordering from me. My primary focus is books and DVD's but I can also provide links to household products, electronics, games, music, anything. Just ask :)
My websites are
http://gr8booksanddvds4u.blogspot.com/
http://www.greatbooksforu.com
http://www.greatdvdsforu.com

Shameless plug 2,
please help us generate some awareness for our cause. All it takes is a click on the link and a click on "Vote"
http://www.sponsafier.com/#/gallery/view/370029

We have a new contest link...
http://www.sponsafier.com/#/gallery/view/370029

We were third in causes and 7th overall the last time which is awesome! But, we're trying it again! Thanks to everyone that voted. I hope you have a few clicks left in you.

More odds and ends and bits and pieces..

Last Tuesday, I took my tri-weekly trip to the Oncologist to tell him my decision regarding the clinical trial. I changed my mind several times with my heart telling me to drop it and my head telling me not to. It is never easy getting the two to agree and they bicker constantly like my 3 kids. But heart and head were able to come up with a sensible compromise. The end game is surgery but I also want to finish Physiology and submit my Nursing school application for the Fall 2011 semester. Therefore, I decided to stay on the trial until the results of the September scan. If there is nothing new and it's just the same old little pests that we already know about, I will drop the trial and prepare for surgery in December. If there is something new, I will go back on chemo and re-stabilize and then will have them removed...eventually. I am praying for the first option as $1600 of medical debt was transferred from the U of C to a collection agency. SIGH... I pay them a little every month. I went to a finance person to see if I could negotiate that they just take what insurance gives them. I was handed a stack of papers that asked for all my savings account balances and my W-2's from last year. Needless to say, I didn't even bother to fill that out. Last year, I was working and this years W-2 with my paychecks and severance won't help me either. OK, enough whining. This too shall pass. For now, I am thankful that all my other bills are paid. I am also thankful that Brivanib may be a viable option for those of you with MPNST as it heads into phase 3. My time on the trial will be documented and hopefully has helped the Sarcoma community with one more bullet in the arsenal. Lord knows, we need that!

Thanks to all who have been voting for our Nascar design. We are #3 in causes!!!! THis is such a great accomplishment. Vote on every computer you have.
http://www.sponsafier.com/#/gallery/view/360505
Thank you for your support on this..

Lastly, I opened a blog for my sites:
My Book Blog
AND a facebook group. I am now sorta wishing I had an advertising course and took one course in Java and web design but I'm a quick learner and will be figuring things out as I go along.
Thanks for tuning in. School will be starting for Em on the 24th, for Kris and Cas on the 25th and for me on the 23rd. I am feeling good, keeping busy, and trying to look forward.

I'm back from the great beyond known as Wisconsin and my few day trip to our little cabin in the woods. The weather was beautiful albeit a little hot and muggy for the first few days and the kids and I were able to enjoy the beach and the scenery associated with the deep woods in the Wisconsin state forest. Emily had a ball and spent the entire time in high gear and was quite the big pest on the last day as we wound things down, cleaned up and drove home. Our Wisconsin cabin is a great place to read which leads me into why I asked the book and movie question (sit back. this may be long but there is a method to my madness). My mother was an English teacher, something I thought odd as my mother was an immigrant from Europe who like many immigrants in the late 40's and 50's were escaping Communism and Nazism. English was not her native language. My mother was Czechoslovakian and she, my aunt and grandparents walked 20 miles through Czech forest and spent two years in a displaced persons camp in Munich before they made their way to the States. As my mom had a heart condition and had to avoid activities with a lot of physical activity, she read books, lots and lots and lots of books. Reading was her outlet and in our early days, my mother required that we read at least 25 pages a day. The first book she forced me read was "Pippi Longstocking". Did I enjoy the book? NO! But, I did become a reader eventually and every two weeks, my mom dropped us kids off at the library and I chose my stack of novels. I read every night before bed and on every vacation to the cabin and of course, other places. I majored in two subjects in college. My main major was Psychology but I took English courses for fun and to force me to find time to read. I added it as a second major my Sophomore year. Not every classic I read tickled my imagination. I suffered through "The Crying of Lot 49" and "The House of Seven Gables." But, I loved, loved, loved Toni Morrison's "Song of Solomon" and Daphne Dumaurier's "Rebecca." While "Wuthering Heights" may have made most of the guys in my class gag, I couldn't put it down. These three novels are my most favorite of all time. Did they change my viewpoint? Not really but I was so engrossed in them that the rest of the world melted away and I became part of the world these authors crafted. George Orwell's "1984" and "Animal Farm" did help shape my world view. "The Lord of the Flies" spawned a great debate on the nature of man and Steinbeck's "Winter of our Discontent" illustrated so well that sometimes people are not who they seem to be as it follows Ethan's descent into moral bankruptcy with actions that appear to be well intentioned.

I am not the kind of moviegoer in line for a blockbuster on day 1. You will never seem me standing in line for hours for a ticket to "Harry Potter." I prefer to see them after the excitement has died down and usually on DVD. I love anything Star Wars and Indiana Jones (except that last one. I don't even count that one). I loved "Shawshank Redemption," "The Usual Suspects," and "A Fish Called Wanda" which I maintain is the funniest movie EVER. "Dead Man Walking" and "Schindler's List" rocked my world. I can watch "The Sound of Music" over and over and over again and never get tired of it. What is not to like about "The Music Man"? And when it comes to guilty pleasures, the old movie "Meatballs" and of course "Animal House" fit the bill. "Jaws" still makes me afraid to go in the water. And, my favorite Disney movie is "Toy Story", all 3 of them. I think I was more excited about "Toy Story 3" than the kids but I dragged them along anyway.

So... now that you've suffered through my diatribe about books and film, I decided to open my own online book store and DVD store. I wanted some reader recommendations to help with the launch and the blog I am trying to write about book and movies and the ones that made the biggest impacts. The sites are located at these web addresses

www.greatbooksforu.com
www.greatdvdsforu.com

If you buy books and movies online, please consider using my web portals and if you don't but have friends that do, please let them know about them. I plan on donating about 10% of proceeds to Pediatric and Adult Sarcoma research which is a cause I care tremendously about and if you read something or see a movie that is so good that it deserves a mention, please let me know and I will read, see and promote or write a guest review and I'll publish it. My links are also listed on the right margin under my websites.

While on the subject of Sarcoma Research, we are trying to promote awareness, via Nascar once again. We did not finish the last race in the top 10 but we were so close we decided to try once more. You can vote for our Nascar design at
http://www.sponsafier.com/#/gallery/view/360505

Winning this design contest could mean awareness. Awareness could = research dollars. If you have access to more than one computer, you can vote more than once every day. Thank you so much and thank you for your support in advance.

I got an A on the last Chem test. WOOHOO!! The class is over in a couple days with my last test on Thursday.
Signed up for the NLN today. I will be taking the Nursing school entrance exam on Sept 8.
I hope I can be a good nurse and do some real good for people.

In a couple weeks, I am launching a web business. I have some websites that I am in the final process of touching up and launching. As I am unemployed and have no idea how long I will be that way, I was looking for something that I can do and manage and market from home. The proceeds from my sites will go towards my medical bills with 10% going towards Sarcoma research. I am very excited about launching these but I have a Pre-launch question.

What book or movie made a huge impact on you? Why?
Did your choice change your viewpoint on an issue? or did it give you hours of pure happiness?

If you want to answer, leave me a comment or email me or join my Facebook page.

Sarcoma Awareness Week

It's International Sarcoma Awareness Week and many events are taking place to advocate for and teach about Sarcoma. I know I sound like a broken record. Before diagnosis in 2006, I erroneously thought that all cancers were the same and that treating Sarcoma would be no different than treating breast cancer. Little did I know that there were no chemotherapies for my Sarcoma type and grade, at least nothing outside the experimental realm. Little did I know that the subset of the population most afflicted with this disease were children. Little did I know that a typical sarcoma patient tries multiple chemos, endures multiple radiation sessions, and goes through multiple invasive surgeries only to have this cancer return again and again and again. Little did I know that the prognosis for stage 1 high grade sarcoma is only slightly better than stage 3 breast cancer.

During this Sarcoma Awareness week, please tell someone, forward an email about Sarcoma, show someone a patient blog, or donate to this most worthy cause. 10,000 sarcoma patients are diagnosed yearly. 5000 die before the magical 5 years. While the prognosis for some cancers has improved little by little, the prognosis for Sarcoma patients has not gotten better. This week is yellow ribbon week. Help us spread the word. For more information on sarcomas, make a donation towards the CURE or meet some of the great fighters out there, see www.fightsarcoma.org

My last scan showed without a doubt that the largest nodule is growing at a rate of about 1mm a month since Christmas. I did not walk out of the office skipping with joy but nevertheless, I have gone on with the business of living. As my Onc was out that day, I could not speak to him about the possibility of just zapping that little bugger, removing it or negotiating with the drug company to open my file and determine if I'm on the live pill or the memorex. I will have this discussion with him tomorrow. Since that lovely revelation, I spent an awesome 4th of July weekend at the ball game, eating BBQ, hanging with friends and family, riding coasters at Great America, studying Chemistry and taking a weekend trip to our Summer home for a little R&R among the trees.....and bugs, but like cancer, I for the most part, ignored the little critters until they became too obnoxious. Then I doused myself in bug spray. The weather was perfect. It was sunny, warm but not hot, and there was little humidity. The clear sky gave me a perfect view of the stars and up there, they are like nowhere else.
I have a "totally cool" list. Those are a few of the things in life that I just do not get tired of. My partial list:
1) Lily pads. I have no idea why I find lily pads so great but on my way to the cabin is a small minnow pond that is loaded with them. It's welcoming eye candy.
2) Cat tails. What is NOT to like about cat tails? As a little girl, I used to slosh through swamps to get some of them. They line the sides of the county roads by our cabin in clumps and bring back some great childhood memories.
3) Tadpoles. I can watch those little critters swim in a pond for hours. When I was a kid, I went to a local pond often and caught a few. I never could keep one alive long enough to see the metamorphosis so now if I find a pond full of them, I leave them alone.
4) Hummingbirds. I love Hummingbirds. One of my absolutely frivolous purchases this weekend, a Hummingbird feeder which is installed in plain view of the windows of the screen porch at the cabin. I hope they find our feeder so when I get to take my real vacation, I can watch them. It's a little late in the season but, there is always hope.
The sighting that I get all excited about the most is shooting stars. Last year, I traveled to the cabin during the annual meteor shower. I saw MANY driving up there. What a GREAT drive! It was the middle of the night but I didn't feel tired. This trip, I saw three!
It was a good trip.

Please keep the families of these children in thoughts and prayers.

Vincent lost his battle with Rhabdomyosarcoma this month. This is the second child that this family has had to bury. You can read about him at the link to Annabella's Garden I have posted under links. This is a foundation established by his parents as they stab back at pediatric illnesses despite the loss of two of their children.

Gatlin lost his battle with Ewing's Sarcoma this month. Before Gatlin died, he organized a fundraiser for pediatric cancer research and raised almost 15,000 dollars and was featured on Fox News in New Mexico as well as in their local paper. Gatlin lived his life as fully as possible until the very end.
Gatlin

Ellie lost her battle with Rhabdomyosarcoma two days ago after a long and very courageous battle. Ellie leaves behind a twin and two of the most faith filled parents I have ever met. Lance Armstrong tweeted about Ellie. You can read about her at http://www.liftupellie.com/

Matthew lost his battle to HLH. Matthew lost his little brother Andrew to HLH a year ago. His parents have buried both their children in the span of a year but despite their grief, they fight for new treatments and therapies for this rare disorder and carry on with undying devotion and faith to God.

I am always struck by the strength and faith of these families. They have experienced the worst that life has to offer yet they still hope. They still dream. They still carry on. They teach and inspire and though I wish with all my heart that I never had to journey on in cancer, I can't help but be thankful that I have been shown and taught about life and death from this community. Too often in life, we get caught up in the "shoulds". Children should be playing and happy and be spoiled. Every child should have two parents. Every family should have 2.5 kids, a suburban mortgage and a faithful golden retriever. No parent should bury a child. No parent should have to deal with cancer when they still have young kids. We all should live to 88 and die in our sleep. Shoulds do not exist. There is no specific way life is supposed to be. "Shoulds" are something that humans create. They rarely reflect was truly is or what is truly important. They don't point to anything important. This past Tuesday, I watched the finale of "Saving Grace". I was not a regular watcher but I was interested in seeing how the series, which focused on a police officer that walked the line between good and evil, ended. God sends her an angel who emphasizes that God has a task he wants her to perform, that only she can do. Grace took three seasons to tell God she would do what He asked. What that task is, is to face evil. She does and she wins but how she wins requires her to perform the ultimate sacrifice for her fellow man. The critics stated that the show forgot to save Grace. There SHOULD have been a happy ending that resulted in the defeat of evil without a sacrifice. But there was a happy ending and Grace was indeed saved. It was a more spiritual definition of saved, not the human definition. With God, there is no life or death. There is only life. Death is a change of state, like a solid ice cube evaporating into a gas. It's still water no matter what form. And though I've met many families who have lost children, parents, sisters and brothers, those gone from this planet are still alive...alive in memory, alive in their writings, musings, grief, joys, and successes. How we face death, speaks volumes about how we face life. We should do it without a preconceived notion about what should be and just deal with what is.. It is a shame that the greatest teachers for such a lesson are the children.

Happy Father's Day to all the dad's out there!!

What a difference a week can make. Slowly but surely all these little nickel and dime issues are being worked and resolved. The new stove and washing machine are up and running. The dishwasher is defunct but Cass and Kris work if you feed them. Emily was horrible for about a week but thankfully, her father had FINALLY put her on his plan. It only took him 4 years! She is medicated. COBRA thing is straightened out and it's affordable until December. After that...well, I will cross that bridge when I get to it. Unemployment is straightened out for now though I missed a day of class to tend to it and it turns out the class was not the issue. I am still scratching my head trying to figure out what the issue was exactly but whatever! I certified my benefits and will have to do it again in another week. The last things on the MUST GET DONE LIST, are brakes and oil change and find a job.
I got a call last week to interview for a 3rd shift dispatch position for a logistics company. I was excited about the interview but received a call at the last minute canceling the interview. The company decided they wanted candidates with dispatch experience. All they wanted was customer service experience at first. Then the rules changed. I was disappointed. But the very next day, I received a call from a company that I was HOPING and PRAYING would call me for an interview, AND THEY DID!! If I get the job, that would be wonderful and it would scratch a HUGE to do off my list. I'm trying so hard not to get my hopes up but I am excited about this potential position. I'm trying a little visualization and sending my order out to the universe ala "The Secret" and we shall see what happens. It's a tech support position. MY FAVORITE! COME ON JOB!!!!!
I applied for a job at my old company in their customer service center. I have 3 years experience as a team leader in an inbound call center. As I met all the other criteria, I sent in my application. It took less than 45 minutes for them to send me a bong letter. "While you certainly meet the requirements, we are looking for candidates who more CLOSELY meet the requirements." HUH? "But.." the letter went on, "If we are lacking in qualified applicants, we will give you another look." Yes, I'm scratching my head a bit. I looked at my candidate profile today. It appears they are lacking in more closely meeting the requirement candidates because my application is now "under review."

Chemistry is going well. I am finding that I *gasp, ENJOY the class. I may change my mind after this first test but, the labs are fun. Maybe I just secretly like setting things on fire. I did a good job of accidentally setting on fire a beaker full of wooden sticks. Here's a lesson for all you novices out there. Make sure that after you do your flame tests, you double check to make sure that the fire is completely extinguished on the match before you put it in the waste container. Fortunately, I noticed the flames before we were evacuated. But a day in chem lab without flames is well, an oddity for me. I don't know why my teacher likes me. I've got this little black rain cloud, which may have come in handy on Thursday if it had actually rained, following me around. And, speaking of rain, we had a gully washer blast through here on Friday. Thanks Iowa! The storm came through at 75 mph and brought 90mph wind gusts with it. All 6 cats, 3 kids and I were downstairs. I had kerosene lamps, candles, flashlights and a change of clothing ready JUST IN CASE. When the first wind gust hit the window, my house shook, the lights went out, and the kids shouted an expletive because they didn't have time to save their WII game.. While I was fiddling with the candles, the lights came back on. Thank goodness! (This time I made sure the match was out. Good thinking huh?) The storm blew through in 30 minutes. WE ventured on back upstairs and life returned to normal for a time. Round two was scheduled to hit us around 9pm. As it was Friday, I had a shift at Walmart. When I got there, all the employees in my strip mall were standing outside. The store was pitch black. Power had been out to that side of the road since the first gust which knocked down a pole. I didn't complain. I sat down outside and chatted with my coworkers until the lights came on 90 minutes later. Hoards of people came running into the store when we reopened. I looked at the steady stream of people running in here like we were the last bastion on the planet for paper towels and expected big important things to cross my belt after all, the second storm was less than an hour away and it was just as red on the radar as the first. I looked for granny's heart meds, maybe some diapers for the baby or extension cords and flashlights for those who still didn't have power. I got none of that. My first order that night was little trees and soft soap. LITTLE TREES (car air freshener) AND SOFT SOAP???? That guy trampled over tons of people to buy LITTLE TREES????? This dude risked his life in cruddy weather so his car will smell mountain rain fresh??? God bless America! The subsequent orders were just like that. Hair dye. Doritos. Pepsi. Condoms (which I can ALMOST see), make up, perfume, and those stupid animal shaped rubber bands. When round two hit, the store looked like the NY stock exchange. Of course the power went out for a few minutes. When we got the lights back, the registers were having a very hard time getting back in action. I looked at a sea of angry faces and heard the same question "How long is it going to take?" over and over and over again. I wanted to say "I dunno. Weather fairy is not in my job description" but I simply stated that it took over 20 minutes for the registers to reboot the last time but it was difficult to tell and it was still storming outside with some very nasty lightning and wind. Some took their place in line and waited and I also watched a mass exodus of grumbly people who did not want to wait and then spent the night picking up and sorting abandoned carts. Good times! Good times!

So..there you have it. I have a nice tasting glass of red in my glass, a chemistry book that I really should be looking at and my blog right now. Back to the books!
oh yeah..scans are on Thursday.

Unemployment......the saga.

One week of unemployment and life has been .....irritating. I call these nickel and dime days because nothing has been life threatening just.....irritating.
Last weekend at the Mart was Hell. Friday night, I worked from 6pm-11pm non stop. After returning home at 11:30, I had a very hard time falling asleep and didn't drift off to dreamland until way past 1am. Four hours later, the alarm went off. I dragged my butt out of bed at 5am so I could be at work at 7 and it was of course, really busy all morning. I could not WAIT until lunch. After my hour lunch flew by, I reluctantly walked back to the front. One of my co-workers met me and "suggested" I head back to the break room and take cover. A fire in a transformer knocked out all the power. The store was on backup generator and only 3 registers in the entire store were functional. Hundreds of customers with carts full of everything from flowers to frozen foods were read to hang us in effigy. It was my job to collect all the abandoned carts, sort them and refer all the screaming customers to management so the customers could scream at them and management could tell them that there was nothing they could do about the power outage. Wal-mart is huge and powerful but we do not own our own electrical grid. We were down for almost 4 hours. The doors were locked and no lie, people were pressing their noses to the glass, screaming at management in anger as if we were not one of 5 Wal-Marts in a 10 mile radius but that's OK. Obviously for them, it was cathartic. Sunday was equally as hellish without the power outage. After lifting at least 200 48 packs of bottled water, 20lb bags of dog food and kitty litter, I was pooped when I left the store on Sunday and once home, I hit the couch and didn't move. Monday, it rained. It rained out our BBQ. Fine. Whatever. It was a great workout for the new stove. On Tuesday, I had a 504 meeting planned for Emily at her school at 3pm. I received a call from the U of C that I had an appointment scheduled with the Dr. at 1:30. OOOO! Not good! With the traffic, there was no way I was going to be able to make it to her school by 3. Called early to see if I could have the blood work done another time. "What if we got you out by 1:30" said the nurse. UGH! OK. I made the trek in. I sat in construction and horrible traffic and it took 90 minutes to get downtown. Of course there was a delay in the blood lab. I didn't get out by 1:30. I got stuck in the elevator and the valet took 30 minutes to get my car. At 2:20, I was finally on my way and sitting in traffic....a LOT of traffic. Traffic that translated to 2 hours to get from the downtown to Arlington Heights. I missed my meeting. I was annoyed. We rescheduled it for Wednesday at noon. Emily's kindergarten graduation was at 5. I made it home from the hospital at 4:20 and we had to be at school by 4:30. I raced in. Kristopher was not home. I was annoyed. We left without him. At 4:45, he called from somewhere. "You have until 5 to get to the school" I told him. After the graduation, I raced Emily to tee ball. While there, Cassie called to ask me to bring home hot dog buns. As it was 7:45 now and I had not been home since 11:45, I stopped off at the little Mexican tienda on the corner. They had 2 shelves full of hamburger buns but not a single hot dog bun. I went to dollar general next door. Nada. 7/11 had them for 3.50 but I didn't care about price anymore. I just wanted to go home. Wednesday, I woke up early and sat down at my laptop. It wouldn't boot up. GREAT!!! It was making a grinding noise before it stopped working all together. That makes one stove, one washing machine, one dishwasher and now one laptop on the fritz. Fortunately, the laptop is on warranty. After shuffling through piles and piles and piles of papers, I found the warranty info and of course, there was no 800 number. I called Tiger Direct, now COMP USA and was met by two confused employees. After being "disconnected" twice, I was given 800-comp-usa to contact. Whoever answered the phone was not the nicest and told me they had nothing to do with warranties and try whoever gave me the warranty in the first place which was Bankers with no 800 number. He did find me the 800 number and I called only to find myself in a huge VRU loop. The option that applied kept disconnecting me and when I tried other options, it referred me to option that kept disconnecting me. In absolute irritation, I kept pounding 0 which connected me to a person...finally and the technical equivalent to Nurse Ratchett answered the phone. I told her i believed that my laptop had a bad fan. It's not the first bad fan I had ever had so I recognized the symptoms. "Well, let's do some troubleshooting anyway" she said. "OK," I said, "but it's the fan." She wanted me to remove the battery. Try as I might, I couldn't get the battery out of the back of the laptop. "Maam, you're going to have to call me back. I have people waiting." LIKE HELL I AM!! This person was going to WAIT until I wrestled that DAMN battery out of the back of the laptop and if she so much as thought of disconnecting me after the problems I had getting to her in the first place, she had another thing coming. As she tapped her pencil, she said once more to get a neighbor to help me and call back. With a final pull, that battery finally came out. OK, she said. Power it down, remove the power cord, hold the power button for 40 secs and then plug it back in and boot up. Done, I said. "What does the screen say?" She asked. "Fan error!" HA! ....I'll get my laptop back in 3 weeks. In the meantime, I'm on the slow as molasses backup computer. I was annoyed. Yesterday, in the mail, I received a letter from the State of IL that they are not granting my unemployment benefits until I have a face to face meeting with them regarding my school schedule. The meeting is in 2 weeks. WONDERFUL!!! As it will take 8 weeks for AT&T to give me my severance, what in the world will I have to live on for 2 weeks? Annoyed again. Apparently, full time school schedules are not allowed on Unemployment. As I put down that I am taking one class this summer and one class in the Fall, I think it's pretty clear that I'm not going to school full time. But if they want to waste time with a meeting, so be it. My employers have been paying my unemployment insurance for 20 years and my little Chem class is now an issue. I don't see how a phone call could not have set things straight but this is the government.
Wondering why it smelled like crap and dirty socks in Kris's room, I investigated. I found my answer and EWWWWWW!!! is all I'm going to say about that. I cleaned two rooms from top to bottom. I have done oodles and oodles and oodles of laundry and am one sweaty tired out mess by the end of the night and the house still looks yucky because I have disassembled in order to reassemble if that makes sense.
I hope I find a job soon. This "nothing to do" is exhausting.

As a PPS: I went to the pharmacy yesterday to pick up Emily's meds. Her first day out of Kindergarten was hard for me and for her as her routine was disrupted. She was absolutely horrible all day. When they said it would cost 200 dollars, I was stunned. The pharmacist told me to call the company and find out what happened. I was practically in tears when I walked away. No unemployment, no paycheck, no 200 for prescriptions. AT&T canceled the benefit but had not put the COBRA through. This means that the Dr. appointment I had on Tuesday was not covered either which means another headache. All shall be cleared by Wednesday but will we survive an unmedicated Emily? We'll find out.

Happy Memorial Day...is happy an appropriate word for this holiday? We are commemorating all those that have lost their lives fighting for our country. For millions of families, this is not a happy day.

Many years ago, I worked as a server in a small local restaurant associated with the Holiday Inn in Iowa City. Holidays and weekends are meaningless when you work food service so on this particular Memorial Day, I was serving breakfast and lunch to the few people in our hotel and I met, Wayne. Wayne was a homeless drifter thumbing for rides down I80. He was also a Vietnam Veteran who saw the front lines, came back to America suffering from Post Traumatic Stress Disorder and was vilified and crucified for his service during this hugely unpopular war. On Memorial Day 1989, Wayne drifted into Iowa City, Iowa and found his way to breakfast in our restaurant after spending a night panhandling. Wayne's behavior was erratic. He stuffed his pockets with buffet food, refused to sit at a table, and wandered in and out to purposefully harass guests and workers in the Hotel. At one point, Wayne went outside and relieved himself in the bushes outside in full view of all restaurant patrons. Then came back in and sat at his table demanding more coffee. I was Wayne's server that day and in his coherent moments, he talked to me about Vietnam with a pained expression on his face. "This is Memorial Day" he said. Then louder he repeated it. The few diners turned around to look at Wayne who by this time, had climbed onto his chair and started screaming at the top of his lungs, "DOES ANYONE HERE KNOW WHAT MEMORIAL DAY IS!!?? ANYONE?" (Our Manager left the restaurant quietly to get security) Pointing to each guest he repeated "Do you know what Memorial Day is? How bout you or you?" Guests looked away. One women looked terrified. At the top of his lungs Wayne shouted "MEMORIAL DAY IS WHEN WE WENT TO WAR, GOT BLASTED AWAY, AND NO ONE GAVE A SHIT!"
At this time, security entered and led Wayne away. He was still yelling as he was led out the door. The diners sat in stunned silence and we workers could just stand and stare.
I think of Wayne every Memorial Day. I wonder how many like Wayne are out there. Soldiers who saw Hell and came home to careless indifference to what they sacrificed. Provided these soldiers survived the war but inside Wayne was just as dead as those who didn't. Let us never forget the magnitude of this sacrifice. America is not perfect but our country is something to be proud of and we must never forget all those people like Wayne who were willing to lay their lives on the line to protect our freedoms. Thank you, Wayne for your service. Though you may have felt forgotten in 1989, I have not forgotten you and I never will.

5/26...

Today, is my last official day on the payroll. Tomorrow, I file for unemployment. Many people have asked me how I feel about it. Truth is, I don't know. Sometimes, I feel empowered. Sometimes, I feel a little down. Last night, I typed up my official goodbye. To some, I sent a personal note and noticed I was getting a bit weepy as I typed on. I remember the feeling I had on my first day on April 5, 1995. Fifteen years later, there are no words that exist that can describe the feelings on this last day. As I said goodbye to my co-workers this morning, I was getting ready for a job interview. After I closed out my email, I made plans to get together with CNA friends this Saturday. At 5pm, after my exit interview this afternoon, I will print out the Waiver form to send priority mail to the benefits center first thing tomorrow morning. Then, I will mix myself a Pina Colada and quietly move to AT&T history. I'm leaving with little fanfare and quietly closing the door.

This week, has been filled with the good and the bad. My appliance usurpation has not finished as my dishwasher joined the ranks of non-functional household appliances the other day. Frustrated! VERY FRUSTRATED!! After I cursed the darn thing out, I logged onto the computer and visited several of my friends blogs. Five sets of parents that I know of are facing the loss of their child soon and here I am worrying about losing a dumb dishwasher and a job.. To quote my late friend, Charlie, "You never know how good it can be till you've found out for yourself how bad it can get".
Life AIN'T bad....and you're right Sue G. "Man Plans. God Laughs."
He's been laughing a whole heck of a lot.

The first day of....

I'm not quite sure.
Yesterday, I took the last final of the Semester and received my longed for A in Anatomy. WOOHOO! After my Anatomy final, I came home, poured myself a glass of red and celebrated by doing nothing except enjoying the wonderful glass of cheap red wine and a movie. I relished the wonderful feeling of having nothing pressing to do for about 2 hours. Today, I looked at my wreck of a house and asked myself, where do I even start. Piles of laundry are stacked up in every room, under every piece of furniture and yes, even hidden under the stairs. But because this is my life and nothing goes very smoothly in it, my washing machine died this morning. The timing just could not be better. With a broken stove to match it and impending unemployment less than a week away, I once again will have to put buying a new stove on hold and buy the new washing machine instead. One of these days, I will have a functional stove and not a decoration sitting in my kitchen. My crock pot, toaster oven and microwave have served me well. Perhaps they can hold up a little while longer. I made my way to Walmart to buy cleaning supplies. Tomorrow, after I do my morning job search, I'll begin on removing dirt and putting it back outside. This will be no easy feat. As a matter of fact, my house could probably be a great episode for "How Clean is Your House." I welcome those two British ladies to try and make this disaster look habitable again. Three weeks ago, I yanked the cable from the computer monitor and told the kids that Facebook is defunct until they actually finish a chore. Yep, three weeks ago I told them that. They still don't have their cable back. They are all of the sudden really interested in writing papers and doing homework....on my computer. Considering my son hasn't handed in an assignment in his Law and Government class YET this quarter.....
So, tomorrow will be the first day of getting a chore finished, the first day seeing my floors again after 8 months, the first day of unfettered free time that really isn't free until after I remove dust, dirt, fingerprints, old food, cat hair (LOTS OF THAT) and bacteria that probably thought it had a permanent home from my house. Then we'll take it from there. Monday, school starts up again but class is for two hours in the morning. Then what?

I took my Anatomy final tonight. When I came home, I had no idea what to do with myself. Without my book, I feel so naked. That book traveled with me to Atlanta, Iowa City, Walmart, Dr's waiting rooms, and church and as it's been a constant companion, it feels like I just spurned a lover and am moving on to the next one in one week. I'm waiting on the final grade. I need at least an 80% but hopefully better and I keep my A. Tomorrow, I will take my Biology final but my instructor said if I wanted to stay home, stay home. There are 600 points possible in the class. I have 606 now without the final. BUT, I am taking the final. No matter what happens, I still have the A but I want the knowledge. The whole purpose of the class was to help me on the NLN. Though some of the material overlaps with what I studied in Anatomy, much of this last unit did not and it is a good overview for the entrance exam for Nursing school which I will be taking on July 22.

Today, I was hired to do a temporary project for a large grocery store chain. As the end of my career at AT&T is coming to an end and I have received no job offers from the company or anywhere else YET, I have time to do some 2 or 3 audits a week on the store's customer service in the various stores around the Chicago area. The schedules are flexible, it pays $11 an hour, reimburses me for mileage and I can take Em with me if I want to. Sounded like a winner. I can work up to 25 hours a week without affecting unemployment. As I usually work 18-20 at the Mart, the additional 6 hours won't interfere and if by chance I have to take a weekend day off, I can make it up here. The project will last 3-6 months. I'll keep looking for a job in the meantime and even if I do land something full time, I can schedule this around it.
This is relatively short tonight. I've been hibernating and trying to get this class finished. Physiology in the Fall will be my next textbook ball and chain. I want an A there too!

PS: Clinic visit this past week was fine. All blood counts are good and my BP is excellent.

Happy Mother's Day!

To all my mommy friends. Our work is just never done!

May 5 is an anniversary of one of the most life changing events in my 42 years. It was the day I heard the words "You have Sarcoma." It is a close second to the words "You have a son."
Four years. As I'm in my 40's, four years is a drop in the bucket but it seems like a lifetime ago that I was living a life free of it, without Dr's, scans, MRI's, and Scanxiety. My cancer journey has been bumpier than some, and smoother than others. But the impact is the same and anyone who has ever heard the words the first time, can tell you the date and the time and how it was said and can describe the gut wrenching feelings that transpired afterwards. It feels like a blow to the stomach. We are paralyzed for a moment, then as the wind returns we say "I'll fight! and I'll WIN." The journey starts out about I but the further we go down that path, the more we come to understand that the journey is about "WE". No cancer patient can do it alone. Cancer is a disease that not only affects the patient but the family and the friends. Some old friendships are lost. Some old friendships get stronger. New friends are made.
Where do I want to be in another 4 years? Cancer free and a nurse. That is the goal. But I have problems dealing with any event that is further out than a month and sometimes that is too long. Life can change in a second.

You can't tell when strange things with meaning
will happen. I'm [still] here writing it down
just the way it was. "You don't have to
prove anything," my mother said. "Just be ready
for what God sends .............William Stafford

I have now returned from Atlanta after an amazing 24 hours meeting the most amazing women. After listening to their stories, I felt hugely unworthy of the honor of receiving one of the 7 scholarships awarded this year.
The Possible Woman Foundation seeks to grant scholarships to non-traditional women, those of us who do not qualify for "normal" scholarships, whose lives have been interrupted by hardships, challenges that most normal people do not see. Yet despite these challenges, their scholarship recipients forage ahead, using the challenge to do good in the community.
The other women experienced the absolute WORST that life had to offer but turned it around, refused to be victims, focused on what is POSSIBLE, not what is impossible and through education propose to make dreams come true.
At 11:56 on MOnday morning, I boarded a plane. I sat next to a Nurse Practitioner on her way back to Atlanta and we had a conversation about Nursing and about Sarcoma. I landed at 2:40est and stood for a minute to get my bearings and then headed towards the baggage claim area to find the driver. The Atlanta airport is HUGE and I walked what felt like a mile, taking in the people, the sights, the sounds, the busy-ness of the terminal and the excitement. I don't care for flying but I find airports exciting and full of possibility. I have suppressed wanderlust. When I see all these people boarding planes, I imagine exotic places, lush vacations, sites of beauty and I want to travel and see and experience. One of these days, I hope NOT to suppress the wanderlust anymore. I found my driver and I sat down and waited for the arrival of the other award recipient scheduled to land shortly after my flight did. We were driven to the hotel, a lush, elegant, modern and HUGE Hotel. He gave us directions to meet him at 5:30 at the door and he would take us to dinner. How cool is that? We had our own driver! I checked in and flopped down on the bed. I realized I was starving and dug into the lunch I packed for myself that I had hoped to eat on the airplane but didn't. I got dressed and was sitting there watching T.V on a nice large flat screen. About an hour later, my roomie checked in and we had a chance to talk a little before the banquet. At this time, I had met two women and I knew that they had a story to tell and I was interested to find out what that story was. At 5:30, we all gathered downstairs. We introduced ourselves and had a chance to talk a little bit on the ride to the banquet. We were treated to an open bar. We had LOTS of pictures taken of ourselves. Dinner time. On the table was a card introducing the 7 of us and what our stories were. Among us was
A survivor of 3 types of cancer.
A rape survivor
A former heroin addict and single mom of 2 who cleaned herself up and now wants to work with Juvenile offenders.
The founder of a 501.3c that transitioned women from prison to outside life
A former Meth addict and single mom of 1, who grew up in foster care now a straight A student with a bright future.
A domestic violence survivor and single mom of 4, now pursuing a Nursing degree.

As we were all individually introduced, my jaw was on the table. They chose me to be one of the seven of these incredibly strong and brilliant women. I felt hugely unworthy. WE all shared later that we all did listening to the challenges of the others. This is my life. I live it every day. As this is just my life, I never thought it was anything incredibly different or special from anyone elses. Needless to say, we were all fast friends. We had a lot to talk about. We had a lot in common. Our circumstances may have been different, but the journey and the lessons were very similar.
After our banquet was over, we were driven back to the hotel where we had a chance to talk a little bit before bed. And in the morning, we attended a conference for women who have focused on what is POSSIBLE.
This was a conference about power, not power over anyone else but power over ourselves, harnessing the power within us, using that power to institute positive change in everything we do. No matter where we are in life, we are NEVER power-less. We ALWAYS have choices. Do not make excuses. Make changes. There is never a bad time to do good and make what is POSSIBLE, a reality.
I am incredibly blessed for having the opportunity to be there. It was a 24 hours I will carry with me for life and I'm so happy that I met these women and that we decided to keep in touch and hopefully enrich each others lives.

I am also going to thank my kids, Kris and Cassie, for doing such a great job on their service project: Sammie Hartsfield's 4th Annual Bunny Drive.
Sammie was a child I met in Outreach. She died of Osteosarcoma in October but in her honor and memory, her family opted to continue her idea. Sammie urged her family to collect stuffed animals for the kids in children's hospital. www.fightsarcoma.org and Team Sammie teamed up this year to make Sammie's idea national. Kris and Cassie appealed to the congregation of St. Marcelline Catholic Church to donate stuffed animals for the kids at Comer Children's Hospital. They attended all the masses last weekend asking for the donations and we all attended all the masses this past weekend to collect them. While I was in Atlanta, they braved the rush hour traffic to deliver the animals. Great job, Kris and Cass!! My role was small. I asked the youth pastor if we could do this and I made the call to Comer to arrange the drop off. Kris and Cass did the brunt of the work. I'm proud of their effort and thankful to St. Marcelline for all their generosity.

Focusing on the POSSIBLE! I WILL get an A on that Anatomy test on Monday! Well, it's possible. Better get to studying :)

I know it's been awhile since I've posted anything. Busy..very busy!
I have a lot to update but today, it will be short. Tomorrow, I am flying to Atlanta for the PWFI scholarship banquet. I will return Tuesday night. I do not care for flying. I am a control freak. I want to feel the wheel in my hand. I want to steer my ship or um Honda minivan, myself. I don't find it particularly comforting to be in the air 30K miles up...I just don't. When we hit turbulence, I look around the plane to see if any of the more experienced flyers are reacting. If they aren't, I try to relax. If they are...... someone better have a barf bag or some Depends handy.
Wish me luck or ship me Valium!

Fundraiser for Fightsarcoma.org

Goodsearch will donate $1 for every toolbar that is dowloaded up to $5,000! Download it here and every time you shop at 1,300 participating stores, a percentage of your purchase will automatically go to our cause! The download is free and there are many discounts for you while shopping. I love this Sarcoma charity and the people who run it. toolbar linkee dinkee do -----> Fightsarcoma Toolbar

Every dollar counts towards fighting this cancer :)
Thank you for your support.

Scan results ( Brivanib, the second year)

Stable but with possible growth of a mm to one nodule and 2mm to another. I was not too thrilled with that but my Onc was not concerned and was questioning how the radiologist could even say that as there is a 2mm deviation on CT scans due to respiration (took a deeper breath) and the CT scanner takes pictures at 2mm intervals. Because I'm on a clinical trial, he mentioned this. If I were a regular patient on a regular mainstream chemo, 1-2mm of growth would not even be mentioned as cancer usually grows a lot faster than that. In the past 15 months, the big nodule grew 2mm POSSIBLY. That is almost the rate of growth of a benign lesion sooooo, I wait for 3 months for the re-scan. My Oncologist said not to lose any sleep over it and my clinical trial nurse asserted it looked to him to be air and not to worry. SOOO...there is hope that these &*)*)& haven't really started growing again.
Things are on hold at ol Ma Bell. I uploaded a resume onto our career website and do check it daily for something I might be interested in doing. If I am forced into this then I want to be picky about my next step. Five years ago, I would have taken anything. Today, I am looking for quality. I don't want any old job just to have a job. I want a job that well, I want. For now, I'm doing my job until I hand it over to the overseas group. I still don't know who will get my government account as that cannot be done overseas but, we'll figure that out.

Emily starts Tee ball tonight. She was angry at me at first for signing her up. Baseball is for boys, she said. Today, she is excited and excessively irritating about when she gets to start. I think her new pink tee ball bat and pink cleats sparked her interest. Today, we get her a mitt and she is insisting she wants baseball socks. She will be playing for the White Sox BOOOO! So far, neither Kris nor Cass ever played for the Hanover Park Cub's teams dagnabit. Emily's father might be thrilled but in a house full of Cub's fans, I guess we'll just have grin and bear the offending uniform.
A couple weeks ago, I took some time and watched "Passion of the Christ" and I cried through the whole thing. I read the reviews of the movie and thought that many missed the point. They focused on the violence and only on the violence, called it violent pornography. Well of course crucifying someone is VIOLENT.. DUHHHH! The movie was about the SUFFERING. I say SUFFERING in capital letters because there is a big difference between SUFFERING like that and suffering with let's say a cold. It wasn't easy to make that choice to SUFFER. But, this man did. He, Son of GOD, also questioned WHY? Couldn't this have been done a different way? Why this unimaginable SUFFERING? Before He was taken into custody, He begged God not to have to do this but He did, took on the cross and carried it. I had to look away from the screen a few times. All I could think was WOW. Just WOW! And Mary, His mom, watched the whole thing. WOW! That must have been so excruciatingly difficult. She could have said no to all of this. Jesus could have said no to all of this. They didn't. Sometimes, we are called to do things that are hugely difficult. But even through this Passion of such HUGE SUFFERING, little bits of the compassionate God shined through. Why would it not for those of us dealing with our own suffering? Have a very HAPPY EASTER everyone. And to Sue, a blessed Passover. Many upheavals in many lives during this time of renewal. I hope that these upheavals will lead to a new and better life.