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2011-12-22T00:48:00.000-06:00

My first semester of nursing school is completed! Last Tuesday, I took my final and celebrated by making an emergency doctor appointment to knock out the sinus infection that made studying a real challenge. Then I slept which is something I didn't do much of all semester. I will not lie, though I had a good time, met some cool people and cared for some interesting people, I have really enjoyed NOT going to class, studying, worrying and running around this past week and have turned my attention to the next pressing thing...putting together a Christmas celebration in 2 days while working an overnight job and an 8 hour shift on Christmas Eve and washing 4 months of neglect out of my house. I have been doing laundry for 3 solid days, cleaning carpets, Christmas shopping because until Monday, I hadn't bought a single present. The kids have sort of been helpful...ok not really but I learned a long time ago that they are not reliable. My son's idea of helping is waking up at noon, taking 45 min to eat a bowl of cereal, then taking a 45 min shower, going outside to smoke a cigarette before taking a 15 minute break to play a game on Xbox. After I've yelled at him to get his butt moving 10 times, he'll pick something up off the floor and then tell me he'll finish it later because he has work. Cassie sits on Facebook and updates her status about shrew, slavedriver mom who is cracking the whip. After I've yelled at her a few times, she'll pick something up and then complain she's tired. Emily...forget it. Getting her to do anything is a pointless exercise in futility. This Christmas, we are so far behind the 8 ball that we just finishing decorating the tree 3 days ago. Though my son DID put up the tree, he only put the lights on half of it. That looked a little ridiculous in our picture window!

It was also time to turn my attention back to cancer land. It was scan day yesterday. I had a chest X-Ray in June so this was the first post surgery scan and I was Sooooo nervous. I've been under a lot of stress, haven't slept much, and haven't been as diligent about taking care of myself. I had nightmares about a lung full of little sarcomas. But, the scan was good overall but it wasn't a pure NED. It never is with me as I have granuloma in my lungs or what one radiologist marked as granuloma. Since cancer was found in my body, there is no such thing as a benign spot without a biopsy proving that. There is an itty bitty nodule in my right lung that has been there for years that looked slightly bigger. It was measured as 2.5 mm last year and was a spot the surgeon opted not to try to remove because it was too small and he wasn't sure he could find it. This year it measured 3.6mm. 1mm possible growth in one year. There is a 2 mm deviation. This scan could have hit the nodule in a different spot or I could have been caught in a deeper respiration. There was nothing new so we watch the spot. If it decides to grow, we'll assume it's sarcoma and unfortunately removing it will mean PAIN due to it's location but I'm happy! I am free to enjoy Christmas and go forward into my next phase of nursing school without having to deal with chemotherapy. The best gift of all! Thank God!

As I will be dealing with the removal of nursing school and cramming Christmas prep in every second, I doubt I'll type here until after the holiday. Have a very Merry Christmas and a blessed New Year!

Into the home stretch

2011-11-24T23:55:00.000-06:00

Happy Thanksgiving!!

The thing I am liking most THIS year about Thanksgiving is two whole days off of work and that the end of my first semester of nursing school is coming up fast and furious. I survived! I survived 48 tests, 5 speeches, 8 clinicals, 2 holistic reports, 8 evaluations, 2 simulations, 16 four hour labs, and 12 papers. I worked two jobs, have three kids, a home that is in absolute shambles, financial problems and I made it! I'm dragging myself across the finish line of this first lap a little bruised and beaten but I'm still kicking. Three more laps to go.
I still can't see the other side of the mountain but by the end of next semester, I should and maybe even see myself as a Nurse and not an IT person. It's still a role that feels very very unfamiliar. Nursing school has consumed my life, challenged every fiber of my being mentally, emotionally and physically. Sleep is a foreign concept. Humiliation, frustration, exhaustion, and insecurity are constant companions and Stress...let's talk about stress! Gotta make the grade, can't screw up the clinical or the simulation. BUT, I've learned a lot. I've met some awesome people. I've taken care of some great patients. I showed myself that with all that I have responsibility wise, I can do this ......with copious amounts of sacrifice and hard work. So now I enter the home stretch. One more week of clinicals. One more lab. then finals. Then I enter the second semester, rested, with new reserves, and hopefully ready to tackle the challenges that await.

It's a lot to be thankful for.

2011-10-14T02:46:00.000-05:00

It's been ages since I have typed anything here. I am still alive. My lovely ADHD/ODD daughter has made HuGE strides forward thanks to a wonderful drug called Risperdal and some successful behavior management. Some semblance of peace has been restored at home and I have spent a very busy Spring and Summer in class. Yes, class is my life.....my whole life because on April 5 I received that coveted acceptance into nursing school. My summer was spent reading and writing papers and my fall has been spent reading and writing papers, giving speeches, taking tests and stress and more stress. I am now on the eve of my first clinicals due to start next weekend. Exciting and terrifying alllll at the same time. As for cancer, my June chest X-ray was clean. CT is scheduled for December. If there are more nodules, there will be more surgery and then I'll continue on to my second semester of nursing school. Onward!
To all my fellow sarcoma/cancer warriors, I love you all and I carry you with me when I study. When I feel there is no way I will be able to finish this program, I remember why I started in the first place. That has made all the difference.

Add another journey

2011-02-21T01:49:00.000-06:00

With children comes great joy but sometimes, great amounts of grief. From the moment we find out we are expecting, we make plans for our kids, dream for our kids, imagine that they will grow up to do great, monumental things, wonder if they will be the one that will save the world. When my youngest child was born, it took me 3 seconds to notice that she was a fighter, a strong little thing and I knew that if this child wanted to, she could be President someday. When my daughter hit toddler hood, she redefined the phrase "terrible twos" which stretched into the terrible threes and then the absolutely horrible fours. Not knowing where to turn with my strong willed, tantrum laden, absolutely defiant little girl, I insisted that she be seen by a therapist despite the protestations from her Dr. and several therapists who insisted that my daughters behaviors were absolutely normal. But, as a mother of two teenagers, I knew that what I was experiencing with my youngest was hardly normal. Now that I had finished my first round with cancer, I began my simultaneous journey with a child with a mental illness. I found a therapist who would see my daughter. Whereas it was validating to hear from a professional that my concerns were not unfounded, my daughters problems have proved to be a little more difficult to treat than with a simple pill. The only thing simple about this process was the fact that she was a text book case and easy to diagnose. Her diagnosis: ADHD and later on, Oppositional Defiant Disorder. The Dr. wrote me a prescription for Strattera which worked for six months and then stopped working all together. All the while, my daughters behaviors escalated to the point where my home life slowly and surely eroded into chaos. When people ask me what ODD is, I describe it as "my child doesn't listen." "Well Duh!" they say, "What child does?" But ODD children don't care about consequences so it's difficult to dissuade bad behaviors with negative consequences. My day begins and ends with an argument. I argue with her about getting dressed. Then we argue about packing her backpack, brushing her teeth, combing her hair and taking her meds. Once in the car to school, we argue about how fast I drive. When she comes home, we argue about her doing her homework, eating dinner at the table, cleaning up her mess, taking a shower and then going to bed. When she is not arguing with me, she is irritating and provoking us. While we watch TV, she will turn it off, turn down the volume or stand in front of it. If one of us is on the computer, she will pull cords, slam her hands on the keyboard, unplug the mouse, the power cord or whatever will get us to react. We can't talk on the phone without her screaming in the background. At school, she constantly tries to provoke the teacher and recently, her behaviors have exploded into outright aggression towards other kids. I'm well known at my daughters school. When I call, they recognize my voice. Heck! Her principal will soon be on my Christmas card list. In the years that both older children spent at grammar school, I never met the principal once. In the year that my youngest has been there, I've been a weekly resident in his office. In many ways, this has been a harder journey than cancer and just as heart breaking as I watch my child struggle, be ostracized, and miserable and know that I have zero control and absolutely NO idea how to help her. Life with my daughter is difficult and some days, we are not living. We are just dealing with her and waiting for the minute she falls asleep so we could have a moments peace. When my daughter goes on weekend visits with her dad, I don't even want to leave my house because I enjoy the fact that there is quiet and calm in my home. Don't get me wrong. I love my daughter very much. I want her to be happy. I want her to have friends AND I want peace and normalcy. During my cancer journey, her outbursts were even more difficult to handle. I often thought, "this is NOT fair." I asked God why in the world He thought I could handle this. I told Him I AM THE WRONG MOTHER FOR THIS CHILD. THIS child needs someone with more patience. She needs someone who can be there for her more than I can. I cannot give her all the attention she wants and though I spent years studying Psychology, I can't control my own child nor can I even understand why she does the things she does. I hate who I am when she acts up as to relieve my own frustration, I scream at her to STOP IT! Screaming and yelling....got us nowhere. nowhere. My baby is still suffering. I am still frustrated and still clueless as to what the answer is for her and for us. After an outburst at school this week, in which she hit multiple students, she wound up suspended. Suspended. As if that was going to punish her. She would go to daycare in the morning instead and eat cookies. She proudly handed me her paperwork and said "See! I don't have to go to school tomorrow." She was smiling. She had "won." She didn't want to be in school anyway. I called her Psychiatrist. He recommended I take her to the ER. Now that this line was crossed, he doubted that a suspension, an expulsion or anything of the kind was going to do a thing to deter my child's behavior. Inpatient, he felt, is where she needs to be. Which is where she is. My child, aged 6, is in a mental health facility. She's a baby, just a little girl with HUGE problems that neither she nor I know how to resolve and the night I signed the papers committing her to the care of a team of professionals, I felt such grief. Yes, my daughter is alive but I'm not naive and know that it will be a long time before she will be truly well. We are in for a very very long journey. I am still questioning God about handing me the care of this special little girl. Maybe one day it will be crystal clear for now, I am praying that she can be helped.
I love a child with Oppositional Defiant Disorder. When she misbehaves and is totally unlikeable, that's when I have to show her that I love her the most....kinda like God does.

A New Year

2011-01-28T23:31:00.000-06:00

2011 is 28 days old. Time has flown by so quickly, that I did not realize that it has been almost 2 months since I last typed an update.
On Dec 13, I took my Physiology final. I got a B on it and an A in the class. The Pre-req's for Nursing school were officially complete. My application was submitted for the Fall semester 2011 and I just received the letter confirming that my application was accepted. I won't know if I have a spot until the end of March so I am on pins and needles. This semester, I am taking Microbiology which is a Nursing school requirement that I can get out of the way before Nursing school.
On Dec 22, I went downtown for my CT scans and pre-ops. The scan was stable and I was officially referred for surgery to remove the lung nodules I've been dealing with since Summer of 2007.
Christmas flew by and I mean flew. Before I realized what hit me, it was over and I was left with a pile of wrapping paper. The entire holiday season was a blur for me. I did all my Christmas shopping after work and for one week, after leaving the house at 7:00 AM, I did not return until well after 10PM. Nevertheless, I got the shopping, wrapping, grocery shopping, house cleaning, and cooking done. The kids liked what they got though there were no real surprises for them.
Dec 30, was surgery day. After working 3rd shift on Wednesday night, my sister drove me downtown that Thursday morning. I was very flip about the whole thing and was honestly not nervous. After working the graveyard shift, I was too tired to care and almost happily lay down on that gurney almost looking forward to being knocked unconscious. After waiting in the Pre-op waiting room for over an hour, I was finally called into the prep area where I waited some more. The pain team came in prior to surgery to place the epidural in what was probably the most uncomfortable part of the process. Surgery took about three hours and I remember waking up in the recovery room. My surgeon was signing some paperwork and I remember thinking "Ow! this hurts!" Then I passed out again for a couple hours. When I came to, I wasn't in pain anymore. I spent 3 days in the hospital and barely remember any of it. I was getting IV injections of Dilaudid and taking Vicodin for breakthrough pain. I couldn't stay awake for more than 45 minutes at a time and I missed the ball drop on New Years Eve though missing the party this year didn't bother me. I was discharged on New Years Day to my own devices. The surgeon removed 6 cancerous nodules, the largest was 2.5cm. The others were less than a cm.
I haven't had time to reflect on this. I have had cancer for a long time. If I count the time prior to diagnosis, cancer has been in my body for 10 years. I don't think that I will ever feel free of cancer no matter how long my scans are clean. Cancer is a journey that is NEVER really finished as we deal with the after effects of treatment, the financial devastation, the psychological ramifications and the physical changes. I am cautiously optimistic and am looking for ways to make this experience count for good. For now, it is business as usual. Thank you Nonalee, Lynne, Kris, Mary Therese and Dan for all your wonderful support through this whole process. I couldn't have done it without you all.

Unfortunately, 2011 brought some bad news. I was sad to hear about the passing of Daria Maluta. Daria was a breast cancer patient whose blog, "Living with Cancer" brought many cancer patients together. She was strong and faithful and she will be missed.
Please pray for my dear friend Sue G. Sue is all over the cancer blogs leaving such wonderful words of encouragement and now she needs encouragement as she is dealing with brain mets and though the outlook is looking positive, storm the Heavens for her complete recovery!
Prayers for Elsa (Living with a Sarcoma) as well. She has been dealing with chronic pain and stubborn tumors.

Still here. Still alive. Still plugging along.

2010-12-02T22:20:00.000-06:00

It's been a little while since I posted an update but in this case no news was well...no news. I work at 9am and on Mondays, Tuesdays, and Wednesdays, I've still been going to class which ends on Dec 13. YAY! Needless to say, I've been getting home late and tonight, I'm cranky and tired and should be studying for either my lab practical or my final. I don't feel like doing either. Tomorrow, I work a double shift and then spend the weekend doing the retail thing. Thanksgiving was nice and almost relaxing. I got it in my head that I was going to clean the carpets. So after work, I trudged to the store in the freezing cold, the day before Thanksgiving and rented a Rug Doctor. I stayed up until 2am cleaning carpets and moving furniture so that I could put up my tree. As I was moving couches, chairs, and tables, I thought, wow! I feel thankful that I feel well enough to do this. I then collapsed in an exhausted heap into bed and was awakened at 6:30 am by a very excited Emily who was anxious to get the party started. I was VERY annoyed but through my annoyance I thought wow, I'm thankful that I have a healthy child to annoy me. So I dragged my still exhausted and now achy body to the kitchen to make coffee. Of course the kitchen was a mess because that is where I moved the dining room chairs. So I hauled the chairs back to the where they belonged and cleaned my kitchen so I could mess it up again when I put out the pre-dinner spread. I barked at my kids for lounging around while I ran around and was thankful for two lazy teens that I could bark at. Then we went to a buffet and ate good food and I was thankful that after 5 months of living on unemployment, I could pay for a nice Thanksgiving dinner and that I am current on my bills though there is lots of debt. My new job exhausts the heck out of me but I am thankful for that too. Most of all, I'm thankful for all the family and friends, old and new, that have taken an interest in my journey.

Happy Hannukah to my Jewish friends!

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Unemployment....the saga....ends for now.

2010-11-12T21:19:00.000-06:00

It happened pretty darn quickly but I was hired as a contractor to work in tech support for a company that provides voice services. I will be working on, of all accounts, the dedicated Walmart team! I will be the 3rd shift girl. This is EXACTLY what I was looking for. Though it is not in health care, it is doing a job that I like and the money is not bad. I am paid hourly and susceptible to over time. On Monday, I will sit at my own desk, with my own little phone and work tickets just like the old days at AT&T when I worked tech support. It's amazing to me how even though the place has changed, the people I'm working with are different, and the boss is different, there is an air of sameness. Telecom has a feel to it. There is stress in the air. The sky is constantly falling. The problem tickets mount and mount. Second line managers take heat from the top and pass it downwards. Stressed out customers dealing with outages push the heat back upwards and in the middle of all this displaced stress, is me, your friendly neighborhood help desk technician. It's a beautiful thing. It's familiar. I know this world. Being back in this call center, working trouble tickets brings back feeling of nostalgia for the last job that I felt that I truly contributed something to the team. But, I know this is all it is and I tell myself every day to give this job my all but never get distracted from Nursing school. The world of Telecom can suck a person in. You ride on a tidal wave of adreneline, get caught up in believing that it's all the most important thing in the world, and bask in the glory of fixing trouble after trouble after trouble. But when all is said and done, telecom has an inflated sense of importance. It deludes a person into thinking it is THE singular most important thing in the world. I will never forget that after 15 years of nights and weekends, holidays and overtime, working 12, 13, 14 hours a day while going through chemo, sacrificing health and family time, AT&T thanked me by showing me the door. Sobering!
Yes to EMPLOYMENT but Nursing school is where the heart is. I pray that He never lets me fall away from the path!

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2010-11-05T11:29:00.002-05:00

I'm not sure if anyone was aware but there was a national election on Tuesday. Yesterday, I finished deleting the last of the many election related voice mails and am now looking forward to the removal of the billions of election related signs plopped in every nook and cranny up and down the street. I am not disappointed in the results of this election as I like the idea that there is some check and balance in Washington. It is not my intention to start a political discussion about who is more patriotic, who cares more about the people, who caused the current recession, or who is responsible for the atrocious deficits. Yesterday, I logged onto to Facebook and noticed that one of my friends had changed his status to ""my friends name" believes that Republicans love America...they love it like the mother who loves her baby so much she drowns it in the bathtub to save it." My friend is a progressive. I chose not to comment as political discussions of any sort on his FB page usually leads to me being bombasted up side and down by some of his progressive friends as I found out when one told me to die and get off the health care roll during the health care reform debates. But his status bothers me as a similar status saying the same thing about Democrats would bother me on a Republican friends site. I am a mutt politically. I am red on fiscal issues. I am blue on some social issues. And I am purple on a lot of issues I don't particularly care about. In America, there are 307 million people. To suggest that there are only two points of view, Democrat and Republican, is ludicrous. Every person has a unique situation and a unique point of view and our founding fathers knew this when they drafted the Constitution of the United States. They knew that 500 representatives with 500 different ideas would come to the table and write legislation but they wanted a 2/3 majority so that those 500 points of view could write legislation based on what they could agree on. The party out of power is not an enemy. The people that choose this party to represent them is not the enemy. We are all Americans. We all need our voices heard. We all care about people, our country and our country's future. We disagree on whether people are better off with big government or small government. We disagree on whether more taxes or less taxes, more tariffs or less tariffs, protectionism or free trade, or whether or not it is Governments responsibility to take care of our neighbor or each individuals responsibility to care for our neighbor, is the better course of action and is best for our country. But to paint each individual member of the other party with the same brush, is hugely short sighted. I don't base friendships on political affiliation. I have friends of all viewpoints, Communist included. But though I may disagree vehemently with what they feel is best for America and would fight against their point of view in the voting booth, I do not consider them the "enemy". Last night, as I was flipping through channels, I landed on Stossel who was having a discussion with a Conservative and a Liberal at a table and DEBATING the issues, not calling their opposing viewpoints stupid, Un-American, or traitorous. If anything, it is this we should be celebrating here. Our country did not like the policies, the unemployment rate, the bailout, healthcare reform, whatever the pet issue and the people took it in their hands to change it, to restore some balance, whatever the mind of the voters was. This process does not happen in Cuba. It does not happen in Venezuela. It does not happen in many Middle Eastern countries and even in some Western ones but we Americans, all of us, are empowered with this phenomenal right to send to Washington by a simple majority, those we feel best speak our voice but once in Washington, they are bound by a super majority to ensure that the legislation reflects where we can agree. I am not my friends "enemy" and I do not care any less about my country than he does. Neither are those that were elected to serve, who put their personal lives out there for scrutiny, campaigned hard, and sacrificed privacy and family time to represent our interests. We Americans...should be proud of who we are, what our country is, and all the blessings that come from living here. There is NO OTHER place like the US in the world. We are unique. We have individual rights and we care about each other and should celebrate what unites us, not what divides us.
God bless the USA and prayers for all those who serve us in Washington..

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2010-10-27T22:00:00.000-05:00

Life has settled into some sort of routine. I get up, I have coffee, I fight with Emily about almost everything pertaining to getting ready and out the door in the morning. When I come home from dropping her off, I enjoy peace and quiet for a couple hours. At some point, I straighten up the kitchen, wash floors etc. On Mon, Tues, and Wednesday night, I go to class. Usually, I have no problem being in class and even enjoy it. Today, as I sat in the large lecture hall learning about T-cells and B-cells, I was overcome with doubt, maybe worry. I've put everything into going to Nursing school. What if I don't like it? What if I am terrible at it? What if I am sorely disappointed in what I am striving so hard for? After 15 years in IT, I know how to sit on a phone and help someone troubleshoot a problem. I know how to order equipment, push vendors to deliver it faster, and draw up excel spreadsheets. I don't know anything about running an IV or drawing blood and I worry that in a critical moment in a patients life, I'll crash and burn. I know it stems from the unfamiliarity. I enjoyed my CNA clinicals but I never felt entirely comfortable. I worried that I would inadvertently hurt someone, drop a resident, forgot something important, you name it. But, I've come too far in this process to turn back and I'm pretty sure that I can't fit myself back into corporate America so easily anymore.
So, I am moving forward.

Nick and Friends Sarcoma Foundation, www.fightsarcoma.org, is having a fundraiser for Sarcoma in Comanche Park on October 30. There will be games, music, and food, LOTS of food. If you live in this area, near this area or are passing through, consider stopping by.
The official press release:
When: Saturday, October 30 · 11:00am – 10:00pm

Where: Comanche County Park, Pavilion #2, San Antonio, Texas

Brought to you by: Nick & Friends Sarcoma Foundation, AT&T Telecom Pioneers , Briggs Equipment and Many others.

Join us for a BBQ fund raising event. There will be concerts, a dance, kids costume contest, raffles, games and much more. The entire day will be jam packed with great food and fun activities. All proceeds benefit Nick & Friends Sarcoma Foundation.

For more information, please contact shaw-family0136@sbcglobal.net

I unfortunately, am sitting this one out due to unemployment and debt but send my very best to all my friends who will be there and am hoping and praying that the event raises some significant funds for research and patient support.
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2010-10-19T09:08:00.000-05:00

The Desiderata

You are a child of the universe no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.
Therefore be at peace with God, whatever you conceive him to be.
And whatever your labors and aspirations, in the noisy confusion of life,
keep peace in your soul.
With all its sham, drudgery and broken dreams, it is still a beautiful world.
Be cheerful. Strive to be happy.

I have recently started to read "Eat,Pray, Love" by Elizabeth Gilbert. It's a story of a journey to self discovery that the author took after a particularly nasty divorce. At the beginning of the novel, she talks about the bickering and fighting that she and her soon to be ex engage in as she begs and pleads for him to sign the final agreement and she puts forth her final offer. The divorce had gone on for over a year and she felt trapped in one place. Desiring to move forward, get over the emotional roller coaster and work on rebuilding her life, she desperately wanted his signature on that agreement. She speaks to her divorce attorney and says that she doesn't feel comfortable praying to God for that signature. The Creator of all things wouldn't want to be straddled with such a petty request when He had wars and other larger sufferings to tend to. Her attorney says, why wouldn't He want to intercede? She was a child of the universe after all. She had every right to petition the universe, God, the Creator to end the suffering. Liz writes a petition to God and her attorney signs it, her friends sign it, and shortly after sending her petition to God with the many signatures, her husband signs the final agreement. Later that evening, as I was typing along on my computer with the TV on in the background, which is a noise I usually ignore. Anyone who knows me well knows I rarely watch TV, however, Emily and I were watching a movie on ABC Family and Emily had settled in on the couch to fall asleep in front of the TV. Joel Osteen, who I never listen to though I know many of my friends do, had come on after the movie and recited this same theme. "Talk to your mountain," he said, "Tell the mountain how big your God is. Petition the mountain to GET OUT OF THE WAY." I'm a firm believer that God, the Universe and everything speaks to us every day through many means, through others, through email, through music, through books, through whatever means possible to get our attention. I had read in the book "Conversations With God" that in everything give thanks. God has already provided everything you need and will continue to do so. Every day, give thanks for the blessings. Shortly after I lost my job, I had a moment of worry as I drove down the highway to an Oncology appointment. What about the kids? What about the mortgage? What about the insurance? How am I going to make it on unemployment? A few minutes later a car zoomed ahead of me and I started when I saw the license plate. It said "Give THX!" So I am writing a petition of my own to God.
Dear God,
I know you have much on your hands but as I sit and write this I am asking for a successful surgery in December and the perfect job whenever that may come. More importantly, I am asking for success for the many organizations that raise money for Sarcoma. I am asking for new treatments for those suffering with this disease. I am asking for comfort for those who have lost a parent, a child, a friend, or someone that was dearly loved to this cancer. I am asking for the power to generate awareness, raise funds etc. Please lead me to the right people. Cancer needs to GET OUT OF THE WAY. My DEBT needs to get out of the way. Those things are holding me back. They are holding back many of your people. Those things NEED TO BE ELIMINATED to reduce the sadness and suffering in the universe. Those things NEED TO BE ELIMINATED so that these children, young adults, and seasoned adults can DO GREAT THINGS in your honor!
I am humbly asking for a resolution to this problem and THANK YOU for what has already been accomplished and all the great people you send to help!!
Kathy

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Our sarcoma car made the finals!!!

2010-10-10T09:06:00.002-05:00

This could mean awareness and funding for the cause.
You can vote every day from every computer available :)
http://www.sponsafier.com/#/gallery/view/360505

Bye Brivanib..

2010-10-07T11:13:00.000-05:00

Last Wednesday, was my birthday and I spent it at the hospital. I had an 8:45 and an 11:30 appt and spent hours and hours literally, waiting. I'm actually used to that and brought my Physiology book (which I hate) and "The Memory Keepers Daughter" with me (which I finished while waiting). Since the Summer, I have been toying with the idea of having the nodules removed from both my lungs. The large one had been growing slowly and since I had awhile to go before it would grow enough to open the sealed file on the Brivanib trial, I did not feel comfortable letting it get that big. I was sent to see the Thoracic surgeon and the question of the day was "Would he operate?" The answer I was hoping for was "Yes!" and that is the answer that I got. How crazy is a world where surgery is a good thing? In my world, it is because it means there are options. So, sometime during Christmas break, I will go through surgery again and it will be less intense than the last one. Three to four days in the hospital will be all that is required and then I can start over. I don't know what the future will bring. I don't think my battle with Sarcoma will be completely over. Once one enters this world, it's rare that we leave it completely. Even patients 10 years out are subject to yearly scans and appointments with the Oncologists. Without a viable chemotherapy option, recurrence will have to be dealt with in the realm of experimental but I will cross those bridges when I come to them. For now, I will say Adieu to the Brivanib trial. On Tuesday, I will head to the hospital, hand in my leftovers, go through a post trial interview, turn in my med diary and say goodbye to some of the people that have been keeping an eye on me these past two years. Other than a complete remission, this is the BEST way to leave a trial and for those that stumble on this blog looking for information on Brivanib, I wish you the same success that I enjoyed with almost 2 years of stability under my belt to show for it and hopefully a closed door on this chapter of the journey. For those with MPNST or any form of Sarcoma, I hope that me and some of the others I met on this trial gave you a weapon, an option to add to a meager pile of chemotherapy choices. The most distressing side effect I encountered was dramatic weight gain which I am slowly in my middle aged-ness taking off bit by bit. In December, a new chapter begins hopefully with an acceptance to Nursing school and a path to clear some of the debt that I have incurred through two years of constant treatments and wonderful "unemployment". My efforts to find gainful employment have not led to anything but a lot of rejection letters and a maxed out credit card but, I have faith it will get better and given the choice between debt and death, I'll take the debt.

The large circle of life is composed of hundreds of little circles that weave and interconnect with each other. Childhood, adulthood, marriage, divorce, all a part of the larger picture. Life should teach us that virtually nothing on this plain of existence is permanent and all are subject to changes, good and bad. There are is a continuity between each circle as all those lessons we learn from each phase, every person that we ever meet or know, is carried from one life journey to the next. There is never a finished creation of ourselves because we ALL change, sometimes for the better and sometimes for the worse. Cancer is a circle that never ends. It's impossible that even if I achieve remission, that I can ever fully close and forget all the people that I met on this leg of the life journey. I will carry you all with me and modify the relationship. I feel like I'm standing on the edge of something greater, me with all my debt and uncertainty and I can't wait to see what it is.

On the Eve of Pink

2010-09-28T09:19:00.000-05:00

I feel like a pin cushion. After my Tuesday appointment, I was suddenly scheduled for all sorts of consults and tests: urinalysis, arterial blood gases (which was especially fun since they needed an artery and not a vein and that resulted in a few extra pokes), ECG, Pulmonary Function, and the usual blood work. On my birthday Wednesday, I will spend the entire day at the University of Chicago medical center to go over all the results of these things this past week and hopefully will hear the words "strong enough to handle surgery" and "Yes, I can take these out." My PFT showed that my rate of diffusion was in the low average range but when they opened my bronchioles with albuterol, the rate of diffusion improved. Don't know how the Dr. will interpret that but as I spent half an hour coughing up mucus, my guess is my seasonal allergies are partially to blame. The only other thing that stuck out was that my blood doesn't carry as much oxygen as a person my age should. It was "good" but low average for my age. I wonder if that is why I faint in areas of low oxygen? I remember a trip to Pike's Peak as a 12 year old. The thin air didn't bother the rest of the family. I found myself on the ground after a slight swoon and I had a HUGE cramp in my side. Living above the tree line and mountain climbing are off my bucket list!

It is the end of September and we are on the eve of "pink." Yes, October is breast cancer awareness month. We celebrate the success in this area. Breast cancer went from one of the least talked about, least researched cancers to one of the most curable. We have made great strides in this area but ladies, though we celebrate your success with you, we mourn that so many other cancers are left in the dust and we are mounting losses by the day to cancers with no treatment options, inferior treatment options, or a lack of effective treatment options developed solely for that tumor type. July is the unofficial "Sarcoma Awareness Month." The events surrounding this area were little discussed, unadvertised and unless you know of someone with this cancer, you were probably unaware that events for awareness existed. Curing this cancer is no less important. The lives of these patients are no less valuable and we need everyone's help to bring awareness and funding and a cure to them. As a woman, I threw my money into curing breast cancer. I threw my money into curing Ovarian cancer. I threw my money into curing cervical cancer. How ironic that after being aware of all these other cancers, that I completely missed the signs associated with having a Sarcoma. For 5 years, I walked around with a little lump that never blipped my radar as being something to be concerned about and how fortunate for me that it was a slow growing, lower grade cancer or I would be among the 50% destined to die after a sarcoma diagnosis. How absolutely fortunate that I am stable with stage 4 sarcoma after 4 years. I can dare look towards some sort of future. For some of us diagnosed with Sarcoma every year, that is not as possible. Rhabdomyosarcoma, a cancer that occurs mainly in children, has a 20% survival rate over 5 years. That is for ANY stage. If the cancer recurs after the first line treatment ends, the child has a 5% chance of surviving. 5%!! Can you imagine being a parent of a child with Rhabdo and being told that this is the chance your child will survive? Malignant Peripheral Nerve Sheath tumor, the tumor type I have, has a 50% survival rate among all stages. If the cancer recurs, the odds slip to about 24%. 1 in 4 will survive. Over the past 4 years, I have met 5 people with MPNST. 3 died. 3 children, a 9 year old, a 14 year old and a 19 year old: Kelsie, Derrick, and Tyler. Milly and I continue to live with stage 4 disease. Melissa is NED, the only one of us who had caught it small enough, early enough and low grade enough. Whereas breast cancer is most often operable, Sarcomas, more often than we like to see, are inoperable. Growing deep within the soft tissue, they weave in and out of arteries and veins making total resection an impossibility. With chemo as the only treatment option, imagine being told with your inoperable tumor that there has been no research and therefore no chemo that has been proven effective on your inoperable tumor. If they occur in limbs, amputation is often the course of treatment. Children with Sarcoma lose arms and legs sometimes before they even learned to use them. Rarely do we see a breast cancer amputee and whereas breast reconstruction surgery is paid for by insurance now, a prosthesis that will allow the children and adults complete mobility are often denied by insurance and we deal with debilitating, unsightly disfigurements that are not so easy to hide. One gentleman at the U of C, had a sarcoma in his face. One little boy I know of, had a sarcoma on the salivary glands. He lost his jaw and his teeth and his family fought long and hard for reconstructive surgery. So while we focus on pink this month and celebrate the successes, please look at the body count that has mounted and mounted and mounted. With your pink, wear yellow and gold in honor and memory of the children and adults lost to rarer, underfunded, little known about cancers that need as many voices as we can get. Someone in my family said "I can't look at sick children." That right there is part of the problem. We don't like to look at ugliness. We don't like to see the young people suffer but we cannot sweep this under the rug and pretend it doesn't exist and it's not happening. Sarcomas are cancers of the young, the forgotten groups: the children, the teens, the young adults, and those in their 30's, often with young children, are most affected.
On the eve of pink, remember yellow and gold.
____________________________________________________________________________________

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2010-09-24T09:34:00.000-05:00

The results of my scans showed 3 more months of sweet stability. Though my 2.3cm nodule had been growing at the rate of about 1mm a month, there was no growth to that nodule in these past 3 months but more importantly, there were NO new lesions and this had to be the most boring report ever as the comments focused on the staples and screws in my right acetabulum and some diverticular disease in my colon which is normal for a woman my age. Now the fun will begin. We discussed the Brivanib trial and my participation in it and decided that I will stay on the trial and will need to have a Pulmonary Function Test and a consult with the thoracic surgeon at the U of C. If the thoracic surgeon says "Yes, I can resect these," my participation in the trial will end and the next leg of this journey will commence as planned. I cannot describe my life in any terms these past two years other than a complete dismantling. Some aspects have remained the same but others have transformed and changed in ways that I never anticipated. I experienced loss, more loss in the past two years than in my entire life: loss of job, loss of security, loss of health, loss of so many good friends to cancer, loss of financial security, and loss of a way of life I was content with. Nevertheless, the foundation and some aspects of it are still intact and as I sit here and type this, a new house is being built. Without a blueprint, I don't exactly know what the final product will look like but the frame is there, even though sometimes I try to move myself from this house and veer towards the old one, I am propelled forward but to what? Time will tell. Signs that I'm moving in the right direction: no new lesions for over 2 years and no growth in a period of growth to the existing nodules. I scored a 99% on the NLN even after believing that I bombed it, the entrance of new friends and some old ones that have made a grand re-entrance in my life, my two best friends are still my two best friends, Kristopher said the words "Mom, I have to study for a test" for the first time in his young life, my family in cancer who have adopted me into their community, success in school, bills are getting paid even though I have medical bills in collection and I'm sure my credit score is sinking daily, I'm not living in the street and I'm anticipating that the new job that I'm supposed to take will come when I need it.
PFT test is scheduled for Monday. I have no doubt my lungs are fine and my kids can verify that. A full day at the U of C, my new home away from home, is planned for Wednesday. Thank you to all who so diligently voted for our Sarcoma Awareness Nascar. I have my fingers crossed that we made the finals.

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2010-09-15T23:35:00.000-05:00

Scans tomorrow. Have I ever mentioned how much I hate them?

Please help us with our nascar. Thank you for all your clicks.
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Sarcoma Fundraiser!

2010-09-13T09:34:00.001-05:00

For those of my friends that live in San Antonio or heck, even in Texas or one of it's neighbors, Nick and Friends Sarcoma Foundation is throwing a HUGE BBQ on October 30th.
Comanche County Park, Pavilion #2, San Antonio, Texas
Join us for a BBQ fund raising event. There will be concerts, a dance, kids costume contest, raffles, games and much more. The entire day will be jam packed with fun activities. All proceeds benefit Nick & Friends Sarcoma Foundation. See you there!!!

For more information, please contact shaw-family0136@sbcglobal.net

New Edit: One of the Nascars that we have been voting on is one of the 100 semi-finalists. Please vote on every computer available, every day to get our car in the top 10. This could bring awareness to this disease.
NASCAR

They have been planning this event for a year and we are so hoping it will bring awareness and research dollars to this cause. Nick and Friends is run by my very good friend. She puts so much heart into making her foundation a success and she has brought so many sarcoma patients and families together. This is a good and honest charity to put your hard earned dollars to help us find a cure.

This is scan week for me. I have been putting off and putting off making the appointment as I consider this to be a major interruption in my life. Yes, Sarcoma is being a pesky mosquito in my ear and though I am trying to smack it, I keep missing! Pesky! Pesky! Pesky!
I took my NLN last Wednesday. I was feeling pretty confident through the Verbal and Math portions. Then, I got to Science and well, not so sure about that one. Yes there was Physics and no, I had no idea what the correct answer was on any of those questions. I still fail to see how knowing how many Newton's a human weighs has diddly squat to do with Nursing but we do what they tell us. Results should be in my next Monday.
Today, is my first Physiology test. I should be studying but I am finding that the material is just absolutely BORING AS HELL! I am about to leave my fun little computer and lock myself away to study. Fortunately, we only had 5 class periods and only covered a couple chapters and one basic Chem lecture. As I took Chem over the Summer, I'm pretty sure I can tell the difference between acids and bases and an ionic bond vs. covalent. Wish me luck!
Thanks to EVERYONE who has used my book portal, DVD portal and blog. It's appreciated more than you know!

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2010-09-07T11:09:00.000-05:00

Tomorrow, I take the NLN, the National League of Nursing entrance exam. I heard from my Physiology lab partner that it was a hard test and that there was a substantial amount of Physics questions on the test. That's not good. I haven't taken Physics since High School and the 3 months of introductory Physics was a huge challenge for me. I got a D on the simple machine test, a crushing defeat and it so surprised my teacher that he pulled me aside and insisted that I come in for after school tutoring. Simple machines never were very simple, at least not to me therefore, I am hoping to all heck that there are no inclined plane or lever problems on the test anywhere! The other side of my brain is reminding me never to fully believe anyone regarding any test and to go into it confident in my own reasoning abilities. I heard from many that Anatomy was impossible. I got an A. I heard from many that my Chem teacher was horrible. I learned a lot from him, enjoyed the class and got an A. So, what is a little simple machine question, right? Perhaps it's important to know how potentially dangerous it is to push a wheelchair up a ramp without some resistant force behind it or know the potential speed of said wheelchair if I accidentally let it go on that inclined plain! So, after I finish wasting time online, I'm hitting the basement study and doing Math problems until numbers swim through my head.

Labor Day weekend was ok. I worked my usual shifts at the Mart, went across the street for a little beer around the firepit and took Kris and Cass to the Schaumburg Labor Day parade as they were marching with the Band. Cassie, being the semi organized one who doesn't like to be late for anything, had her socks laid out, her uniform ready, and her band shirt cleaned for the next morning. Kris, Mr. Scattered and Disorganized, stayed up too late, slept through his alarm clock, couldn't find a pair of black socks, couldn't find his band shirt and couldn't find his gloves. Cassie was standing there freaking out that they were going to be late while Kris ran through the house blaming me for not putting his shirt away after I washed it and rummaging through all drawers trying to find black socks that did not necessarily have to match. They then fought all the way to the school. When I came home, I sat and enjoyed the peace and quiet before heading out to the parade. Much to the kids chagrin, I learned that there is a video function on my camera! Who knew? I filmed their band as it came down the street and as if the universe knew that this would be the last band performance with both my kids in it, the band stopped in front of me to play their song. I didn't do a professional job with the video tape. At one point, I had thought I turned off the camera and I guess I hadn't. Oh well. We'll just scratch Director off the list of possible careers. I'll upload the video and post it for anyone interested.

Remember September is Childhood Cancer Awareness Month. Please see my "Favorites" list for worthy charities that support childhood cancer research. If you are on Facebook, some of my friends with cancer have opened businesses to help them with their expenses AND will donate to research with every sale. I Love MakeUp is my friends Avon site. Momma's Aroma Shop belongs to a friend whose husband was diagnosed with Ewing's Sarcoma and was laid off during his treatment. She will donate a dollar for every sale to Nick and Friends Sarcoma Foundation. "Like" their businesses for product updates and specials and if you are looking to buy these products for yourself or others, please keep them in mind.

September is Childhood Cancer Awareness Month....

2010-09-01T10:15:00.002-05:00

Wear the gold ribbon this month and advocate for treatment options for our smallest and youngest warriors.

Every year, 12,500 families hear the words "Your child has cancer." That is about 47 children daily. 20% of all childhood cancer diagnosis are sarcomas. Yet, childhood sarcoma is underfunded and kids are left without treatment options if the cancer returns. Some pediatric cancers such as certain brain tumors, are a death sentence as kids rarely live past 2 years once diagnosed. We can make a difference this month and help our youngest warriors against cancer. Donate to Pediatric Cancer research.

Yesterday, I watched this video. This child has a rare cancer diagnosis called PPB. She has multiple cancers. Every tumor in her body is a different form of childhood cancer. At three years old, she has seen more pain, endured more surgeries than most people endure in 30 years. Yet, she dances. She smiles. She gives thanks to God. She exudes such JOY. Cancer has ravished her body and she dances. We were told that the little children shall lead us and indeed she is.

I hope you dance

I'm donating a percentage of anything sold at my stores or book blog specifically for childhood cancer research.

Gold ribbons..
EDIT: I forgot to mention that in my links list are a few really great charities that tackle pediatric cancer. If you can, please check them out.

School and how to help a cancer patient

2010-08-25T09:49:00.001-05:00

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

2010-08-22T20:20:00.000-05:00

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..

2010-08-16T12:13:00.001-05:00

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.

2010-08-09T10:23:00.000-05:00

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.

2010-07-26T13:34:00.000-05:00

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

2010-07-18T21:52:00.000-05:00

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

2010-07-12T13:06:00.000-05:00

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.

2010-06-25T10:45:00.002-05:00

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.

2010-06-20T20:53:00.000-05:00

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.

2010-06-04T16:09:00.001-05:00

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.

2010-05-31T10:30:00.000-05:00

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...

2010-05-26T14:03:00.000-05:00

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....

2010-05-19T22:26:00.000-05:00

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?

2010-05-17T23:52:00.001-05:00

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!

2010-05-09T04:54:00.001-05:00

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

2010-05-05T08:07:00.002-05:00

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

2010-04-22T08:47:00.002-05:00

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 :)

2010-04-18T23:27:00.002-05:00

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

2010-04-06T21:13:00.003-05:00

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)

2010-04-02T07:56:00.004-05:00

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.

The end is still unwritten

2010-03-28T21:09:00.003-05:00

I had barely poured my first cup of coffee Friday morning when my cell phone rang. Seeing it was my boss, I was surprised. She never calls me, not for any reason whatsoever. Surprised she had my cell phone, she called me back on my business line and started the conversation with "I have some bad news for you." blah blah blah "surplus" blah blah...last day May 25th blah blah severance package for you to look over...blah blah blah. Can I say I was shocked? No. I called this day a year ago. My gut was warning me in March. It was telling me in July that it was time to jump ship. Here we are. I was given Friday off to "digest" the news. Despite the conversation, my boss seemed a bit surprised that there was no reaction from me and commented that I seemed to be taking things awfully well. What exactly was I supposed to do? Beg? I simply asked her to forward me the paperwork and I would look it over. She urged me to consult an attorney and a financial consultant and make a decision: upload a resume and try for a position open elsewhere in the company or take my severance and permanently close the door on my career at Ma Bell. I spent Friday doing nothing in particular, went shopping, enjoyed the sun, picked up a prescription, treated it like any other day. Did some thinking over the weekend. Questioned whether I was really OK or just in some sort of denial. Would this layoff leave me in a sea of fear and grief eventually? I slept on it and woke up Saturday morning feeling absolutely.......LIBERATED! Excited even at the thought of a Summer without working two jobs, at resting after back and forth and back and forth to the U of C, Alexian Brothers, endless needles and poking and telling someone my name and birthday. I was excited about studying outside on my deck with a big glass of juice. And then, tonight, while I was taking a shower I remembered April 5, 1995. A young single mom, newly liberated from her husband, started her first day at a company called Advantis. It was the first non restaurant job she ever had and she was scared to death at the thought of working on a computer when she could barely type her name on one. She drove this old beat up two door Dodge Charger without air conditioning and both doors stuck so that she would have leave the window open in order to get into the car because it would only open from the inside. Two little kids were fastened into the back seat for their first day at the new day care. As she stopped off for gas, a million things were running through her head like "Can I do this job?" "OMG! I'm running late!" While deep in thought, she filled her beat up car with gas and realized that she FORGOT TO CRACK THE WINDOW. Kids in the back seat, purse with the money for the gas on the front seat and 45 minutes to show time, she stared at the full gas station, sighed and opened up the hatchback, crawled through a pile of debris while onlookers snickered and opened the door, ran into the store to pay for the gas and tried not to notice the people laughing. The attendant took the money and said "bad day??" "Yep" she said and she drove off for her first day. Once in the call center, she met her boss, Carol. Carol was a sweet and wonderful lady and though young single newly liberated from her marriage, mom was worried sick she could not handle the job, Carol had no doubt she could and boss was right. What was a new adventure, turned into a LOT of new friends. Every day at work was FUN. Weekends were for study or reading or hanging out with co-workers and talking when it was not busy. Relationships. Mary Lou, Ruby, Tom, Joe, Jim, Mahmoud, Doug, Eric, Tina, Ron, Mike and Mike and Mike, Gregg, Faraz, Phil, Leilani, Diane, Lou, Dwayne, Jason, Sherwin...a close crew. Good friends. Many laughs. Good times.
The AT&T that is now, is not the company that young single mom joined 15 years ago and it's not this AT&T that she will miss. Young single mom, now me, will always remember working for Advantis, my very first job. I will always remember kicking the back of Doug's chair on my way to my cubicle EVERY DAY. I do not now why I did that but it became part of the friendship. I will always remember when some smart ass in our group switched the coffee mate with flour. I will always remember Saturdays in the call center. We'd have weekly pot lucks and sit around and girl talk when it wasn't busy. I will always remember Friday nights at Bennigan's, doing blow job shots and winding down after the work week. I will always remember the thrill I had learning, being encouraged to learn, and the great bosses I had who took the time to try and build, not tear down. I have missed the feeling of being valued and wanting to contribute just for that feeling of doing a good job. I have been corporately beaten down by offshoring and outsourcing and feeling devalued, by layoff after layoff since 2004. I've been beaten down by a 40 hour work week somehow slowly growing into a 50 hour work week, then 60 with weekends and nights, feeling guilty for taking time to talk to the kids, eating dinner or going to the bathroom. So, my gut says, no. No resumes. No looking for a job in the company. Take the money and close the door. The fondness you feel is not for this. It's for what was. What was was pretty great. What will be....I guess that's up to me. I'm not saying there isn't a little fear but 3 years ago, I made a promise to God during the Relay for Life. I vowed that as long as I am living I will be a voice for cancer and that I would do anything in my power to eradicate this disease from the face of the Earth. He is holding me to my promise. Whereas He led me to what I needed 15 years ago, I have no doubt He is leading me now....and I'm following. So, goodbye AT&T. It's been a good run. I've learned a lot about what I want, and what I don't. God, now what?

2010-03-23T15:33:00.003-05:00

Bittersweet sums up this week.
Two MPNST warriors lost their fight, Tyler and Kelsie. All Sarcoma deaths sadden me but especially MPNST deaths and double especially when they are kids. My heart goes out to their families and my resolve to advocate and find a cure is strengthened. It's personal!! Yet in the middle of these stories are moments of inspiration, of deep compassion, of communities that come together to support and rally around the afflicted. A few weeks ago, a member of our little Sarcoma community, relapsed with Sarcoma. This Sarcoma warrior just HAPPENS to be local and is in Kris's class. He asked Schaumburg High School if they would participate in a St. Baldrick's event. Here is the story that ran in our local paper. SHS St. Baldrick's fundraiser I had the pleasure of meeting the family at a celebration at our church. This story illustrates so well how one voice can impact so positively.

It is Spring Break. I have put the kids to work cleaning the devastation that has occurred in my house since I started classes in November. We are slowly but surely tending to the wreckage but not without fights and screaming and anger at me because for the first time since last July, we can see sunshine and they want to go and have fun. By the looks of my house, lots of fun has been going on around here as we recently found leftover Christmas crackers, dips and chips still ground in the carpet and are sweeping up piles of debris. You may think I'm exaggerating but um..no, not really. Now that I can see the sunshine through the newly polished glass, it's so much brighter in here and I can actually get a full view of all the dirt. NOT PRETTY! As I'm on Spring break myself, I have enjoyed not HAVING to have a book in front of my face but as I'm sitting here, there is one there anyway though it has taken me all day to read two pages.

Now for the really sweet. At work on Saturday, one of my co-workers had asked me how I am going to fund Nursing school and still pay my mortgage. I told her that I am hoping that God can pull a few strings for me. That evening when I came home, there was an email from an unfamiliar name asking me to call her ASAP. The email came from Possible Woman. I won their annual scholarship and they are awarding me $5000 towards my education! I was thrilled beyond thrilled. Could not even speak an intelligible sentence. I applied for this scholarship in January and as I found it 5 days before the deadline, I hustled to get the application finished and in the mail on time. Again I will thank Sue, Nonalee, Deb, Clyde, Andrea, Cyndy and all of those that encouraged me to go for it, wrote letters of recommendation, and proof read the essays to make sure they sounded intelligent. I am supposed to go to Atlanta, GA during the 3rd weekend in April to attend the banquet and accept the scholarship in person. I will post a link to PWI so that other women reading this blog who want to further their education, can apply for next years scholarship. It is not income dependent or age dependent and will not disqualify anyone for already having a college degree.
In all things, I am truly thankful.

PS: PLEASE vote for our Sarcoma Awareness NASCAR :)
Sarcoma Nascar

2010-03-18T10:28:00.004-05:00

It's that dreaded time again.....SCAN TIME!!! I will say it one more time, I HATE SCAN TIME!! I hate the barium. I hate feeling like someone took a vise grip to my intestines every time I have to drink that crap. I hate the tummy ache and the multiple trips to the potty. I hate the scanxiety waiting for the results and right now, I am treating this like a huge interruption to my vastly busy schedule and I am downright annoyed at the cancer intrusion. SO THERE!

Almost two weeks ago, Kristopher participated in IHSA, the Illinois High School Association annual music contest. He was performing a solo and performing in a quartet, the solo occurring at an obscene time of the morning, 8:30am at Lake Zurich High School which is a nice little 45 minute drive. We had intended on being on the road at 7am so Kris had a chance to warm up. Needless to say, it didn't quite go off that way. I worked Friday night until 11pm, couldn't fall asleep until after 1am and though had my alarm set early enough, I slept through it and apparently, Kris slept through his and Cass slept through hers. None of us got out of bed until 6:45 and after mediating a fight between Kris and Cass over who got to use the shower first, I sent Cass in there and sternly warned Kris his shower should last less than 10 minutes and not the usual 2 hour shower he takes to avoid doing housework. (Note to self: start saving to modify downstairs bathroom from half bath to 3/4 SOON!) Kris proceeded to inform me at 7am that he did not have a white shirt to wear and what was I going to do about it? Hmmm...well let me put it to you this way Kris, NOTHING! Holy smokes! I work at a STORE. I worked at a STORE just the night before. I worked at a STORE every weekend for the 6 months that he knew about this solo contest. So of course, Kris got upset and threatened not to go and I, of course, told him to get his butt downstairs and put on his faded, holey, Led Zeppelin shirt for all I care. The bus is leaving at 7:15. CHOP! CHOP! We pulled out of the driveway at 7:25 and proceeded on our way. Our Mapquest directions were a little unclear and I missed one of the turnoffs. As I'm turning around, Kris is yelling at me for forgetting where Lake Zurich High School is because we were just there a year ago. Do I really have to explain to a 16 year old that over 2 million facts entered my head in the past year and every time one fact entered my brain, something else fell out? Apparently, I did. So while he was screaming he would not be able to warm up, I turned the bus around and got myself on the right track. It was now 8:15. Kris was scheduled to be on stage and I was still a fair distance from the high school. Success, finally on route 22. Directions say turn on Church street. 3 miles down the road, it was clear once more that I missed Church street. How? I went backwards and saw no Church street. In desperation, I took the first right and miraculously found Church. We pulled up to the high school 3 minutes before showtime. I dropped Kris off and parked the car, ran to the entrance, stood in line forever to get directions to the classroom, and somehow made it. Kris did not do as well on his solo as he wanted but, the quartet was wonderful.
This week was an Anatomy test week and I was very busy memorizing muscles, 56 muscles originations and insertions AND actions. I found that hugely difficult. Generally, I look for patterns. There just weren't any and it took me quite a long time to get them into my head. Of course, the test only had 10 questions on that and 40 questions on the two chapters I didn't spend a lot of time on. ARGH!! Hematology and Cardiac care is just off my list of Nursing possibilities. Still waiting for the official bad news on this. I had an A going in. Will I still have an A at the end of the day??? I am seriously hoping my guesswork was in top form last night.
If you haven't done so, please vote for our Sarcoma awareness NASCAR! We're up to 1400 votes. Thank you so much!!!
Sarcoma NASCAR

PS: added Friday 3/19, I got an A on the Anatomy test. :) Maybe I'll put cardiac care and hematology back on the list...

Sarcoma Awareness ala Nascar

2010-03-16T11:01:00.002-05:00

Toyota is sponsoring a contest. Vote on a Nascar design and the winning design stands to have their design made a reality. To promote Sarcoma Awareness, one of my friends designed a Sarcoma car laden with yellow ribbons, bearing the name of every child and adult fighting Sarcoma. We need votes to bring attention to this cause. If this is a cause you can get behind, please vote every day and forward this link to everyone you can.
Sarcoma Nascar

Studyin Science

2010-03-03T22:25:00.002-06:00

When I went to college the first time, I was a liberal arts major, focusing on history, literature and psychology with some smatterings of science classes that I took during my half hearted attempt at pre-medicine. Science and I did not get along. I hated the thought of labs. Chemistry gave me the chills. Twenty years later, I find myself immersed in learning the various systems of the body and studying life. A few weeks ago, we studied the Theory of Evolution. I realize it's a hot button topic for some especially when it comes to man and his role. Yesterday, my son asked me if I was a Creationist or an Evolutionist and mentioned that if I was an Evolutionist, it meant that I was not a true believer in God. There are some that feel that Science dispels all evidence of God but I'm of the school that Science does no such thing. I don't even see how the two can be separated. One created the rules. One attempts to explain the rules. Life is amazing! Life is a miracle in every sense of the word. It is so perfectly put together. Every cell, every plant, every animal, has a place in the world, a function, a reason to be here. Everything is related and if one element of a system is out of balance, the entire system and every element in it suffers. My textbook theorizes life began with one cell. My textbook also cannot explain how that cell got here and makes no attempt to do so. From that cell, came the fish, the flowers, the birds, the reptiles, the amphibians, and we humans. We are one. We are connected. That cell differentiated into cells that adapt to life in cold weather, life in the tropics, life in the ocean, life on land, life in high altitudes, life in the desert, life everywhere that life exists. The odds of that happening anywhere is a billion to one. How can anyone look at Science and say, there is no Creator? Yes, as perfect as life is, really unspeakable things happen. Our perfect Creator did not create a perfect world. I don't think the world was meant to be perfect. The world was meant to be exactly as it is and we, who all came from one single cell, who are all together on this planet after morphing into what we came to be, are all in this together to solve the problems that exist here. We will never prevent an Earthquake or tornado but as a community we can blunt the effects. We cannot affect the bad choices that another person makes but we can make good choices of our own that may counter the bad ones.
Studyin Science...studyin God... same thing.

About Brivanib..

2010-02-26T11:10:00.002-06:00

I've had the pleasure of talking with a few people who stumbled across the blog looking for information about Brivanib so this entry is a repeat for many as I wanted to post an update on this drug trial.

I started the trial on Jan 14, 2009. My official diagnosis is Malignant Peripheral Nerve Sheath Tumor, low to intermediate grade with mets to the lung. MPNST is a form of Sarcoma. I'm in the Phase 2 trial at U of C. For 12 weeks, I was guaranteed to be on the drug for 12 weeks and then was randomized to either the placebo or the actual drug. Initially, the side effects I experienced were light headedness within 15 minutes after taking the drug, thirst (I craved water), fatigue, and weight gain. I gained weigh rapidly, at least 20 pounds in 2 months but, if given the choice between a growing butt and a growing tumor, there really is no contest. The first 12 weeks, I saw initial tumor shrinkage and growth to one of the nodules. After randomization, I was put on the placebo. No, I don't know this for a fact but I experience no side effects on the pills I am taking. I have been stable since March of last year with nothing new and no growth which is wonderful!!! I can't vouch for what anyone else experienced regarding side effects. I've heard of some nausea, some extreme tiredness, some shortness of breath, some increased blood pressure, and some liver enzyme increases but none of those were things I experienced personally. Nutritionally, I follow a modified version of the Budwig protocol and add Vitamin D3 and DHA as supplements. I had been reading that Omega-3 fatty acids, especially DHA, are great cancer fighters and may act on my tumor. I don't eat anything with sunflower, safflower, vegetable or partially hydrogenated oils and spend more time than I have looking over ingredients before I buy or eat something. I like to think the combination of both my lifestyle changes and medications helped me. I don't mind being tapped for questions on anything and purposefully left my email and facebook available. Please use them if you want. One of the pluses to this cancer journey, is meeting all the cancer warriors out there embroiled in the battle.
This concludes this Brivanib update :)

2010-02-22T13:29:00.002-06:00

I PASSED MY CNA EXAM!!! The first little leg of the journey to Nursing school is complete. I feel a little sense of accomplishment as the class I took jammed a semester worth of information into 8 weeks and I passed! Congratulations to the rest of my classmates as they all did as well! We were the Super class! I have an Anatomy Test tonight that I am now stressing over. After four class periods of bones and bones and more bones oh...and a few joints, I'm being tested on all that tonight. Can I remember Symphoses and how they differ from Synchondroses, Synarthrosis and Synovial? Can I remember which bone the greater and lesser tubercle resides on and what bones make up the pectoral girdle? We'll see!
Registration for the Summer session is coming up very quickly and I'm debating something. My intent was to take Physiology and take the NLN sometime in September. My original goal was to apply for the Spring 2011 start of Nursing school. Now, I'm rethinking this. Whereas I do intend on taking a Summer class, I don't know if it's a good idea to rush Physiology. My application to Nursing school will be based on how I do in Anatomy, Physiology and the NLN exam. Do I really want to race through Physiology in the Summer with backyard BBQ's, nice weather, distractions upon distractions or should I wait until the Fall? Right now, I'm leaning towards "wait until Fall" and take Chem 101 over the Summer which like Bio 101 will serve as a refresher to score higher on the NLN. This would bump the Nursing start date to Fall of 2011, a full 8 months later than planned which isn't horrible. The down side to that plan however, is AT&T. Last week, one of my friends notified me that his AT&T center located in Mesa, AZ, is closing. What this may mean for me moving forward, is unknown. But Ma Bell has not finished her cuts yet. I have two weeks to make a decision and will take any suggestions.

I need a babysitter for a smarty pants 16 year old and a snotty 15 year old who proved over the weekend that they are not fit to be home by themselves. As I study, I am digging out of the wreckage after the wars that occurred here over the weekend. MOM is not happy with her ducklings. My kids are like our current deadlocked Congress. Neither of them will budge and inch on anything and nothing got done. I have no clean clothes and neither do any of the kids. When I asked why it did not get done as I asked my son looked at me square in the eye and said, "Laziness!" At least he was honest. That's good, right? When I asked my daughter why there was a sink of dirty dishes, I was told that the dishwasher did not get done washing dishes until 3pm. Bold faced LIE! I started the dishwasher before I left for work at 9am. Called them on that and the stammering and hems and haws abounded which only fueled the ire. SIGH! I just have no words for all this. On their Spring Break, they will do all this and oh so much more under my supervision or they will be giving up FUN for Lent and beyond! It's not so much the cleaning that is so tiresome. It's just disappointing that with all that is going on, my kids have not been part of the solution. Well... I guess I'll just have to live with the smeared jelly on the couch, living out of the laundry basket, and deal with the no clean towel problem for a little bit longer. This deadlocked congress isn't going to undeadlock any time soon.

2010-02-16T18:52:00.003-06:00

TELL 10 PEOPLE ABOUT SARCOMA DURING THE MONTH OF FEBRUARY!
Sarcoma, a rare cancer of the Connective tissues and bone of which FEW treatment options exist. Let's try to generate some awareness for this cancer. Please tell 10 people about it.

I'm still swimming down deep in the abyss and have not quite come up for air. I've been busy memorizing bones of the skeleton and learning about invertebrates, shoveling snow, dealing with upset stomachs and colds and work, lots and lots of work.

Last week, was my yearly performance review. I was a little nervous but expected that the review would be negative or lackluster. It was not quite negative and it was not quite positive. My boss simply said "You're heart isn't in your work." No, I guess it isn't. She and I had a very good discussion about my goals, what I hope to accomplish and left the discussion with a few things dangling. My future with AT&T is a wait and see though my heart is right now, trying to get through these classes and start nursing school. In the meantime, I've got a 1500 site deal to work on. Last week could also be described as "PUKE." I was up to my armpits in it. Emily threw up for two days. Kris threw up for two days and yesterday, Cassie threw up. She's feeling better. Nothing like a nice introduction to the Nursing world than a good dose of vomit but what can we do? It's flu season in Chicago. Last week can also be described as SNOW.. more snow... Believe me Vancouver, I'd send it to you if I could. We are so sick and tired of snow shoveling and falling on the old gluteus maximus (See I did learn something in Anatomy) on the ice on the driveway. Though we keep sending it Eastward, the States Westward keep sending us more. Please stop!

Valentine's Day... my take.. BAH HUMBUG! I'm like ol' Charlie Brown who peeks into the mailbox and says "HELLOOOOOO in there! there! there! there!" RATS! I worked at Big Box Mart on V-Day and nothing remotely romantic crossed my belt that day. Plenty of somewhat romantic things crossed my belt on Friday night. KY jelly, his and hers, red undies, Vagi-ring (whatever the blazes that is), vibrating condoms, and briefs with big old hearts were sold to the young and um to the very old. Believe me, sometimes, I would look at some of the people buying these things and the pictures in my mind were terrifying! and in about 6 weeks, I'll be selling lots of pregnancy tests and then in November, lots of diapers. Happens every year. Moving on..

Clinic today. Nothing exciting. Another blood test. BP is fine. I ruined another tree by peeing in a plastic cup, oh wait...nevermind. Scans are in March. I am feeling a bit on edge about these scans but then again, I haven't really looked forward to any of them. In Sarcoma land today, I got wind of 4 relapses, all kids. It takes the wind out of my sails a little. It's hard enough to be an adult and live with the uncertainty, it's another for the kids and even worse for their moms who hope for the best but fear the worst. Children are like Adam and Eve before the apple. Innocently, they keep moving forward, somewhat unaware of the gravity of the situation and parents eyes are opened and they know they are naked and they are afraid. I pray for them all and hope someday I can do more.

CNA exam was last Thursday. Some of it went well. Some questions were so .....STUPID that they could only have been written by the state of IL. For example: You are helping a nurse with intake duty. What would you do to acclamate a new resident to his new environment
a) show him the call button
b) tell him the names of all the CNA's and nurses.
c) tell all your coworkers about the new resident
d) let him take a walk around the grounds by himself.

Is it my imagination or do all these choices SUCK!? These are old people who may not be able to walk or have CRS (can't remember sh--). Our book mentioned we should escort them and give them a tour..but oh well. Everyone I talked to had a different opinion of what the answer was. I'll find out in a few weeks if I passed.

Finally, I'm saying a very huge public thank you to Nonalee. It moved me to tears...and I hate crying in public. Thanks for being such a good friend to me for the past 25 years.

Odds and ends

2010-02-05T08:03:00.003-06:00

The days are blurs. Anatomy is in full force. Biology is in full force. The children are arguing and of course only minimally helpful and life is cruising along. My first Anatomy test was this past Wednesday. As the grade I get in Anatomy and Physiology is a huge determining factor of whether or not I am accepted into Harper's nursing program, there was absolutely not one shred of pressure to do well on the test. As it was the first test, I didn't have a clue what I should study and my teachers study guide pretty much indicated every chart, diagram, clinical view and sentence as important. I spent 3 days immersed in the text book, memorizing charts, processes, diagrams, and terminology. One of my biggest fears as I read was that all this work that I was doing would lead to mediocre results. I experienced that this year with my full time job when I spent 12, 13, 14 hours doing work and received a less than stellar review. I don't like to waste time anymore. My tummy was in knots when I entered the auditorium. My classmates were cramming last minute facts into their head. I opted not to. I pulled out my pencil with a nice eraser and sat there and waited. I reminded myself I studied hard. I reminded myself to read every question thoroughly and think things through as I was queen of the stupid mistake in CNA class. I gave myself a little..."you can do this" pep talk. 50 questions, all multiple choice. After I answered the first 10 I thought to myself "Hmmm" this isn't too hard. When I turned in the test, I was fairly confidant that I did fairly well. There were a few questions that I had to think about and as usual got "sternum" and "scapula" mixed up in my brain. I do not know why I do that. But don't worry. If I ever have to give anyone CPR, I won't be pumping on their shoulder blade. Since all of the tests are graded via Scantron, my teacher had everything graded by the time I had Lab and informed everyone the average grade was a 68%. EEEEKKK... He called each of us up individually to get our test grades. I got a 94%. WOOHOO!!! But my work is hardly done. I am immersed in the book studying the bones of the Axial skeleton and HOLY MOSES is it a LOT OF BONES!

On each of our tables in Wednesdays lab, was a box of skulls. No, they weren't the plastic kind. They were real human skulls. I had often wondered how I would handle working with a former human in a classroom setting. My job was to find the bones listed on my lab sheet on the real human skull which I did without spending much time wondering who these 5 human skulls belonged to and what kind of life they led. If I did that, I might not have gotten through the lab.

Kris and Cass brought their grades home. Cass did fairly well for her first Semester in high school. I remember completely bombing out my first semester in high school. New atmosphere. Harder material. More drama. Didn't really know how to study. Despite that, Cass pulled a 3.0. Kris, well, his lack of motivation once again shined through in his grades. He received C's on all his finals after studying maybe 30 minutes. Imagine what he could have done if he had actually studied longer or actually cared enough to try and get higher than the bare minimum. Kris is a bare minimum kid. He does just enough to get by and thinks that is all it's going to take for success. In April, my number one son will take his ACT. I bought software so that he can learn words, practice Math, practice reading and downloaded it to his computer. In April of last year, he took an ACT practice test and got a 25. Because of this, he decided that he does not have to study because DePaul University, where he would like to finish his undergraduate, requires a 22 minimum score on the ACT. Since he scored a 25 on a practice test, he feels that satisfies the requirement. Now he spends his days playing Cake Mania on WII. OH MY LORD..WHAT DID I DO WRONG???

Back to the books. Maybe if they see me study, they'll be motivated to study. RIGHT!!

Back to School!

2010-01-25T08:23:00.002-06:00

After a wonderful week with nothing to do except a lot of laundry and cleaning, things are back to the new normal. I'm back in class and the house looks like Port Au Prince. It's so good to be existing in chaos once more. I missed it for those few days, well not really. I was digging sitting on the couch downstairs watching "Buffy the Vampire Slayer" while folding laundry that hasn't been done since the start of the CNA class. My first class, Biology, started Jan 19th. Not the best day as I had to go downtown for the tri-weekly blood draw and clinic visit. As what usually happens when I'm in a huge hurry, Crook County decided that it was a fine day to shut down two lanes on the Eisenhower Expressway to fill potholes. T-4 hours to class and I'm inching along wondering what in the blazes all these people are doing on the highway at noon. Don't they have jobs??? Waiting for bloodwork took hardly any time at all. VICTORY! The wait in Oncology was the usual. DEFEAT! Ugh! I had to be out of there by 3 no later. I watched the hands on my watch tick tick tick. Finally, they call my name but only to tell me that the NP was in a meeting and would be back after 2:30. No..sorry. I just can't wait. They put the page into the clinical trial nurse. I turned in my med diary. Told him I had nothing to report and I was on my way. I paid for parking and decided to go to the bathroom before I left as I knew there would be no time to go home for any length of time. As it usually takes 15 minutes to retrieve the car, I figured I had time. WRONG! Bathroom closed for cleaning by the slowest male sanitation engineer in the history of Earth. A line conglomerated outside while he changed toilet paper rolls. 10 minutes later, he allowed the line to clear before proceeding further. THANKS! Of course, my car was waiting out front. Of course, I couldn't go anywhere because the valet had my keys. Of course I had to wait and then was LECTURED by the valet for not being there and he was busy and had things to do. GRRRRRRR!!!!!! I could have given him a few words and reminded him about where he was working exactly. The DCAM at the U of C is not a clinic for those with the flu, a cold, an inner ear infection, a normal pregnancy, diseases that can be cured easily. As the word Center for ADVANCED MEDICINE would imply, those of us who are seen there, have medical issues that confound and challenge Dr's and some of those patients DON'T FEEL WELL. But that's ok. I was in too much of a hurry to educate the Valet on the patients he was serving and their needs. I grabbed my keys and left.....and sat.......in traffic....all the way to the suburbs. An accident, not even on my side of the highway, 20 miles from where I was inching along, gummed up the works. I made it to class with 2 minutes to spare. I am taking a basic Biology course. I don't have to but as the NLN exam, the Nursing school entrance exam, tests us on basic Biology and I haven't had a Biology class since before my classmates were born, I figured it would be wise to review, hence, BIO101. It's a little out of place with BIO160, Human Anatomy, but it's a perfect non-major class that will teach me about Arthropods and plant parts which are all covered on this entrance exam. Thus ends the first day of class. My classmates avoid me. Yes, I know this. Some snicker. Some look at me oddly curious as if to say, I didn't realize we'd have a living breathing example of a fossil sitting in class with us. I am waiting for the boy scouts to come help me cross the street. Occasionally, I catch someone middle aged walking through the buildings but even in my Anatomy class, there is a shortage of middle aged students returning to school. I found I had little to talk about with my lab partner. I have every confidence I'll carve out a place for myself eventually and get used to sharing knowledge with kids slightly older than Kris in a non-mom role. My Bio teacher/professor/instructor also teaches at the Chamberlain College of Nursing and told me that most of the students there are moms returning to school. Hmmmmm.
When I went to college the first time, I was the world's biggest procrastinator. So many other things were so much more fun to handle, bars on Fridays and Saturdays and Sundays and any other day in between, finding Mr. Right, yakking with the roomie till all hours, cranking the Calculus Professor at 3am because I was angry he was sleeping and I was studying for a dumb test and doing all those other stupid college tricks. In some areas, I still am the big distracted procrastinator. But, so much is riding on me doing well in this Anatomy class that I surprised myself when I opened the book weeks before the night before the test, and started to study and memorize. Yes, there are different challenges this time. Emily keeps grabbing my book. Kris and Cassie erupt in loud arguments OFTEN. The cat (any one of the 6) sits on my lap. There is loud blaring GOD AWFUL whatever the heck kinda music Cassie listens to coming from the radio upstairs. Every other second I hear the word "MOM!" But despite that, I learned some things last night. I bought a pocket Anatomy guide that I keep where it belongs, in my pocket. At work yesterday and when it was slow, I memorized the abdominal quadrants, the directional terms and the planes. I did my homework for Bio DAYS before it was actually due. There is hope for me yet :)

One year ago today....

2010-01-14T09:22:00.003-06:00

Jan 14 is a relatively innocuous day. It's not a holiday or a presidents birthday. It's not usually a day off of school and is a day that generally goes unnoticed, a normal work day or school day. For me it was the day I started the Brivanib trial at the University of Chicago. I guess it was a kind of birthday for me, an entrance, a beginning. One year ago today, I was officially back in treatment. "Back in treatment" as if the first time wasn't enough.. The first time, there was a definitive ending. This time, there isn't. It ends when the nodules go away and disappear. How long will that take? weeks, months, years, never. It's anyone's guess. One year ago today, I couldn't even fathom what Jan 14, 2010 would be like or even IF there would be a Jan 14, 2010. Cancer patients cannot usually look farther than the next scan. Some patients can't look farther than the next day. We have lost the novelty of using such wonderful terms such as "Next year" or "Next anything". We battle on and try to live normally, ever conscience of the bombs going off. The disease is a reminder to make as much of time as possible and here I am one year later, happy that I've been granted the ability to talk about "last year". On Jan 14, 2009, I met Cathy, a group leader for Gilda's Club, a cancer support group that meets on Wednesdays. I had stumbled upon the group while looking for a comfy chair to park myself and read in between blood draws. (Cancer patients have learned not to go anywhere without a book, knitting or a magazine) After a discussion about healing, I had made mention of how far from the mark I am. Cathy had said "Sometimes, when you're in the Labyrinth, it may seem as if you are closest to the exit and it is usually then that you are really the farthest away and vice versa." Never give up hope. In the labyrinth of life, while caught deep in the puzzle of it all, you may find a point where you think that you are farthest away from the exit but really what you may have found is a vision of the clearest and most direct path out. I'm not sure I have reached that point yet. I see no clear exit from cancer. I'm not sure it even exists. But, what I have gotten a vision of after one year on this trial, is a different path out, a different vision of what OUT is. OUT for me may never be a complete remission but rather a different perspective or point of view. OUT, is finding my dreams and finding a way to live them....
One of my dreams is finding my way to Jan 14, 2011 and once again discussing "last year".

St. Baldrick's Foundation

2010-01-12T08:36:00.004-06:00

St. Baldrick's is one of many foundations whose aim it is to fund research into childhood cancers by sponsoring a Shave-A-Thon. Shavee's will shave their heads to raise money for childhood cancer research. For more information on how to donate or participate, please visit the website: St. Baldrick's

or visit these shavee's
http://www.stbaldricks.org/participants/mypage/participantid/364998 - Jessie
http://www.stbaldricks.org/participants/mypage/participantid/364773 - Nicole
http://www.stbaldricks.org/participants/mypage/participantid/361361 - Tiffany

Emily.

2010-01-09T09:08:00.003-06:00

Today, for the first time all year, I am not scheduled at Big Box Mart on a Saturday. I didn't ask for the day off but I'm not upset I'm not there today. Whereas I really need the hours, I also really need to clean. We never picked up much after New Years Eve and the house looks like we've had several more parties since then. Anticipating that I would get to sleep in, I settled in for a long winters nap and was awakened at 6:30am by Emily who pulled all the covers off me in an attempt to wake me up. Em is offended when she is up and no one else is and does her darndest to rectify the situation whenever she can. After I set her straight, I rolled over and closed my eyes and when I was just about to doze off, I heard a huge crash in the kitchen. One of my kittens crawled into the cupboard and knocked over the backup fishbowl. Gave up. Sleep is just not in the cards today. I guess it's just as well. It's going to take hours to find my house again which is why I'm sitting here on my computer planning how I'm going to attack the dirt, plotting the demise of dinge. It's a fine life! IF Emily remains a good girl today, she and I will go to Walmart and spend some of her Christmas money and then we will go see Alvin and the Chipmunks, her reward for being somewhat good this week. I have learned that with Emily, "being good" is a term that is relative. What is "Being good" for Cassie or Kris is not necessarily attainable for Emily so if she exhibits some sort of self retraint. If she does what I tell her to do after I tell her 3 times instead of the usual 50 over two days, that's being good. If she goes 10 minutes without being purposefully irritating and annoying, that's being good. If she is able to sit at a table and eat for 5 minutes instead of the usual never, that is being good. My daughter, Cassie, who is a black and white thinker, does not understand that shades of gray exist and insists that I hold Emily to the same standards I hold her. It's impossible to explain to a 15 year old, the nuances of raising a behaviorally disordered child. Emily is a real teaching tool. She is my daughter but she is a living, breathing, teachable moment. Active, smart, funny, and interesting, there is never a dull moment with her. But on the other side of the coin, the child has a gift. She could rouse up and annoy a Saint in five minutes or less. There are days when I count down the hours before her "father" comes to pick her up and take her for a weekend and I breathe a huge sigh of relief that there is now some peace and quiet. There are weeks her behavior has us so on edge, we yell and scream at eachother because we live in endless frustration that Emily lives outside of the rules of proper behavior and decorum and cares nothing about consequences. She challenges every fiber of my being. She tests me every day and there are days, I flunk BIG TIME and lose my cool and scream at her. She's like an annoying mosquito and it feels good to swat sometimes. But, she challenges me to be patient. She challenges me to look at her little successes because they are really GREAT BIG successes. Over the Summer, a family moved next door with 4 kids, one Emily's age and is in Emily's class. They formed a fast friendship and Em loves going over there but, I learned very fast that Emily cannot handle all that stimulation for long and an hour is about all she can handle before she starts to act out. A couple months ago, Emily was sent home and told not to come back for awhile. Of course, Em lied about what occurred, but from what I could gather, she and her friend got into a fight and Emily punched her. I felt hugely embarrassed. But I was also devastated for Emily, for losing her friend. I worried that all her friendships from here on out would be tainted with this strife and that my daughter, who has such miniscule self control, will spend much time alone or be the class outcast. Growing up is hard. For Emily, it will be harder. We had a discussion about hitting and punching and kicking. It sunk in part of the way, she doesn't hit her friend anymore, she hits her sister and brother though, often. I guess that's progress. Emily's working diagnosis is ADHD and ODD. ODD stands for Oppositional Defiant Disorder, a clinical version of "My child doesn't listen." No child listens but most children care when things are taken away or thrown away. Not Emily. Doesn't care a lick.
So my living, breathing, teachable moment, challenges me to be UBER patient, watch my mouth which is hard for me because I have a big one, delight in the little things, find some routine and order in my house when I have a child whose middle name may as well be CHAOS, gain control of me, and teach her. It's a hard, hard thing to do when you have 2 jobs, 2 other kids, and no real time support. Nevertheless, Emily earned a trip to the movie today. We've been working on this for two months now and she finally did it. They tell me it gets easier. I just can't wait!

On another note, my CNA class has ended though there is one final clinical tomorrow. This first phase of my get into Nursing school plan has successfully been completed or will officially when I take the state certification on Feb 11. The second phase is now about to start. Anatomy....that class that has remained closed and locked tight, is finally on my schedule. I was absolutely obsessive about checking the college website for an opening. On Tuesday, I noticed that classes had begun to open up that had previously been closed. As I need to take an entrance exam that includes Biology and Chemistry and Physics, I decided it might be wise to beef up my knowledge. I signed up for previously closed Bio 101 on Tuesdays and Thursdays at 4:00pm. Two slots had opened up for certain sections of Anatomy, one at a time I absolutely could not take it and one other on a time I might have been able to manage with some planning. As I hit the register button, I received an error that the class is closed. Someone beat me to it. But that was not a tragedy in the least. Yesterday, I was able to register for one of the sections I had hoped for. The class meets on Monday and Wednesday night from 6-7:10 on Mondays and 6-9:05 on Wednesdays. PERFECT!! Doesn't interfere with Ma Bell. Doesn't interfere with my Big Box Mart schedule and is nearby so I'll be home fairly early and will be alert enough to review. Sometimes, I think this path is blessed. I've gotten everything I wanted and prayed for and for that I am thankful beyond words and humbled.
Now, I'm off to battle the bilge...

Hello 2010

2010-01-02T11:38:00.003-06:00

Time is your greatest advisor. Time will tell you if you can waste your life
in illusion and fantasy thoughts, dwelling over past regrets and future
apprehensions. Just ask time, and time will point out that there are no survivors.
---A Spiritual Warrior

Time has been referred to as a gift from God. On Dec 31, every year, we review the past year: the mistakes, the successes, the failures, the good times and the bad times, the periods of great joy and the periods of great sadness. We consider resolutions to fix what we may have done wrong or do what we didn't do. In periods of great stress and sadness, it's normal to want to set the clock back and start over from the beginning but we can't. We have no choice but face whatever time brings us, head on until resolution and every situation does resolve itself, maybe not how we wanted but there is resolution. I had heard once that Time always seeks to try and "replace" what it took in some way. After losing a mother, a mother figure may emerge. When one door is closed, another, may open somewhere. In that which is taken, something else is given.

2009 took my security away when I was diagnosed with lung mets
2009 gave me a community of friends who I can support in their journey and support me

2009 took whatever financial stability I had.
2009 gave me a new view on what riches are.

2009 took away my life's aspiration with my current profession
2009 gave me a new profession to strive for and be excited about.

2009 took away everything I thought I wanted.
2009 gave me what I never knew I needed.

"Life is school", my grandfather always said. Life is meant to result in growth as is the passage of time. Who will we be without challenges? And though time results in many good-byes, it also results in hellos.. new friends, new jobs, new challenges, grandchildren, blessings, new attitudes, new priorities, new successes.....

Have a Happy, Healthy, 2010!

Goodbye 2009

2009-12-31T09:03:00.005-06:00

Truth be told, New Years Eve is not my favorite holiday. Despite the fact that we always have a nice get together with lots of drinks, chips and dips, this is the holiday that I feel most on edge, as if one more year passed by without a notable accomplishment, as if one more year passed by without Prince Charming riding into my life on a white horse but mostly, it's a day of goodbyes as we say goodbye to a year and all it encompasses, the good, the bad, the unthinkable. The year 2009 has been a year of churn and change. It was a return to cancer treatment. BUt those two words began to mean much more. In those two words were a whole new world, a world that contained needles, drugs and Dr's but also a world of people, and patients, and others, and letting go of an old way of thinking, and embracing a new path, and working towards more treatment options for Sarcomas, and supporting others as they journied and saying hello to some new dear friends and unfortunately, saying goodbye to others that never should have left. So today, we commemorate the passage of time and say goodbye to the old year and unfortunately, friends.. This is a list of Sarcoma warriors who fell this year. Some are children. Some are adults. They were school kids, talented singers, brilliant writers, fathers, mothers, grandparents, budding scientists, artists, and philanthropists. As I read the writings of the families they left behind, they would give anything to turn back the clock to the last time they were able to hug their child or their mom, dad, grandparent or friend.
Goodbye:
Maura
Kevin
Jessica
Greg
Hannah
Derrick
Darrin
Savannah
Kayla
Amber
Marie
Zach
Victor
Sammie
Monique
Codi
Amy
Amanda M
Amanda K
Amanda L
Cullen
Katie
Josh
Darren
Michael
Sam
Laurren
Cody
Lisa
Margaret
Maddeson
Megan
Dennis
Jordan
Shane
Sally

And so a new year will begin tonight, time marches on... what will the new year bring?

2009-12-29T23:28:00.002-06:00

Scans were stable. WHEWWWW!! As it's been 3 months since my last scan, I was especially nervous this time as imagination tends to run wild sometimes.
Class has been going well. My final is a week away! In a way, I'm happy the class will be ending but I'm sad too. I like the class. I like the teacher. I like my classmates. We've had some fun and after Jan 10, we'll be going on our separate paths whereever that may lead. This class was one of those little moments in life that by some alignment of stars, threw just the right people together, in just the right circumstances and created a really good memory but unfortunately, as nothing is permanent, this little life circle will close. I think every one of us has had several journey circles in our life that we look back on and think, wow! it was perfect and I had a really great time.

"It's something unpredictable but in the end is right. I hope you had the time of your life."

2009-12-21T09:56:00.002-06:00

I haven't quite come up for air yet and I have much to accomplish these next couple days. Fortunately, I'm good under the gun and as I've always been a procrastinator, I've learned to live with my own dysfunction and carry on as normal. I usually do my Christmas shopping online. Last year, I deviated from that and decided to go to the store and shop. With me being me, I waited until Dec 23rd. I went out after working an 8 hour shift at Big Box Mart. It was blizzarding outside. The windchill was and I am not making this up, (as anyone who has ever survived a Chicago Winter can tell you)42 below!! THe wind was whipping. THe snow was blowing and there was me pushing a shopping cart through the icy parking lot with thin little gloves on that did nothing to protect my fingers from the cold. I had to continually go into the car to warm myself while putting all these items into my trunk. Then, I went home and unloaded everything into my garage, taking time out to unthaw my fingers as I unloaded, stayed up all night wrapping, and spent Christmas Eve cooking on 3 hours of sleep. AHH the holidays. This year, I did do my shopping online but due to class, much will be done the way I am used to, LAST MINUTE!!
I wish all my readers a safe and Merry Christmas!! Once again, my Christmas cards were never mailed...and I even had stamps this year but all of you, the seen readers and friends and the unseen silent supporters, are all in my thoughts. I hope to see some of you on New Years Eve!

PS..Please pray for stable scan results. Scans are tomorrow.

2009-12-07T23:55:00.002-06:00

I am just writing to say that I'm still alive but, oh so busy!
THe CNA class is half done and sitting in class 4 hours a night for 3 nights a week is a little harder than I originally anticipated. I sailed through the first week, started getting a little tired during the second and now, on week 4, I am exhausted. For class, I needed to have a two step TB test. That required three trips to the County Board of Health to get squared away. I needed to run to the store and get pure white shoes and scrubs and today, I had to take a long drive to the Social Security Administration because dummy me misplaced my SS card. I am not concerned that it was dropped outside. I took it out of my wallet and put it someplace safe. Apparently it's someplace so safe, I can't find it but I do not get to complete my clinicals unless the school has a copy. I don't think I need to mention the running around that results from the Christmas season.
I haven't had a lot of time to write. I hope everyone had a wonderful and safe Thanksgiving and for those that are celebrating CHRISTMAS, have a wonderful and enjoyable season.

I'm wishing a happy Hannukah to my Jewish friends.

When I come up for air, I'll write a longer update.
Scans are in two weeks.. EEK!!

Happy Thanksgiving!

2009-11-26T09:31:00.002-06:00

I was going to try and write a brilliant essay on Thanksgiving, a listing of all I'm thankful for, lessons learned, and ups in the road to wellness. But, I am at the moment speechless. I can only write, A HAPPY THANKSGIVING to all the friends who check up on me, the visitors who take time out of their busy day to read about my mundane life and leave wonderful comments of support and all the silent readers. I appreciate all of you and you are all on my list of people to be thankful for.
God bless you now and always.

A little bump in the road.

2009-11-19T09:05:00.003-06:00

Yesterday was registration day and the next step into my career change process. I need Human Anatomy and then a Physiology class as my last two pre-req's to apply for Nursing school at this particular Community College. I made sure I had all my registration materials by the computer. I practiced my login to the website. I set my alarm clock for extra early so I could make sure I was ready to register at 8am when the website opened. I did all this and much to my dismay found that every single session of Human Anatomy was full before registration officially opened. Perplexed, I called the registrars office and they explained that there was an early registration for some students but to check the website almost daily as a new pre-requisite had been added for that class and some of the students registered will find they are not eligible to take the class before the January start date, others will find that they can't find babysitting, will leave for personal issues, will change their mind, will find that they can't get the time off of work or drop for a myriad of other issues. Don't give up! she said. I won't say that I was wasn't a little....a lot disappointed but it also identified a problem in my get into Nursing school plan. I don't have a plan B. So, I made one. There are several routes I can take. I can apply for a Vocational school and become an LPN. There is a vocational school very close by. When I become a registered LPN, I can apply for a local Nursing schools bridge to RN program. If I am actively employed, my employer might even pay for it OR, I can apply to the local Nursing school which accepts students straight out of High School and immediately do a Bachelor of Science in Nursing right off the bat but that option costs A LOT! Nevertheless, I filled out a form for more info. If the RN test can be taken after the second year, I might be able to finish that program while working. That program is 3 years to the tune of 14K a year but the program outlined is excellent! THe third year is mostly clinical experience in many different settings, Psych, pediatric, general etc. RIght now, the plan is to try to wiggle into that Anatomy class but, I will have to look at the idea of Vocational school or even the very expensive school for Nursing and institute a plan B. My bad for not thinking of that. I was so certain that I could get into the class I needed and didn't think to apply at other nearby colleges just in case I couldn't. Live and learn.
So, the past two weeks has been a challenge. Sitting in class for 4 hours a night is no easy feat and as expected, even after all the conversations with the kids, there have been a few strike outs at the plate but it is better than the last time I went to class. Emily's father finished up paramedic school in June. While he was going attending classes, visits were missed, rescheduled, shortened all to our great inconvenience as we all planned outings, movies etc. that were more big kid oriented for the days that Em was with him and the older kids had to give up social life to care for her when he canceled. My ex told Kris and Cass he would pay them for their time when he canceled and of course, that never happened. My ex has ADHD, Anxiety disorder, and a Borderline Personality. Aren't you all glad that people like him are Paramedics?? But, he thanked me for my "flexibility" while he finished the 10 month program and offered to help me in any way he could while I started my journey. Here is how he "helps".
Me: I have class on Wednesday at 6 and EMily has a Dr. appt at 6. It's a med refill and she has to go. Can you take her? I'll drop her off at "daycare provider" and you can pick her up there.
HIM: I think so. Let me check with my boss. Maybe I can leave 30 minutes early. I'll get back to you.
On Wednesday at 3pm, he calls.
HIM: Sorry. My boss won't let me leave early today and since I was laid off for 6 months, I need the hours. Can you move her appointment to Saturday?
ME: I'll call and see if that's an option.
HIM: OK, Thanks call me back and let me know.
....HE hangs up...then calls back 2 minutes later.
HIM: Wait! Is this Saturday MY Saturday?
Me: No.
HIM: Can you move her appointments to MY Saturdays?
ME: *Sigh* nevermind. I"ll handle it.
HIM; OK.. Thanks. Remember, I'll help you out whenever. Just ask.
ME: Can you find a day where you can take her for a couple hours on M,T, Wed so that the kids can have a little break?
HIM: Sure but on Mondays I have work. ON TUesday, I have firehouse and on Wednesdays, we work late.
ME: OK.. thanks for helping out.
Yesterday, in my inbox, I received a little gem from his mom. Mind you, I like his parents but sometimes.....
THe email said:

"Kathy please do not burn yourself out or get sick (blogger note --ha ha ha ha!) because you know "Big Box Mart" will be asking you for more hours because of the Holidays plus your other things (blogger note: Other things is cancer). It wears thin after awhile of doing it all. Make the kids step up & clean up your house. There is no reason why they can't help out more when it comes to that. I think EM acts up at your house because she can't get the attention she needs because she was very good here on Friday & I even took her to Justice for Girls to try to find something for Thanksgiving & we didn't so she said okay lets go to "competing box store" & try. She picked out a outfit, tights & shoes & then we left there & I took her to Wendy's for a Jr Frosty she wanted to eat it at my house. Then after awhile she fell asleep in my arms. She told me the last weekend "Borderline ADHD, Anxiety ridden dad" had her that she likes going to Daddy house because they do things together & go places. So I think that is why she acts out alot because she is craving the attention & I know it is difficult for you to give it to her all the time because you are busy alot. I know you want this but it is only my opinion you should of waited til EM got alittle bit older. Please don't get yourself all upset by this note. I just feel for you because you will get burnt out & I feel sorry for EM because she has no structure at home. Who helps her with her homework & make sure that it is done? I am sorry I worry so much. Say hi to all.
"Emily's Grandma"

Note the offer in the email about helping me out. Oh wait! It's not there!
Note that Friday is Daddy's day with Emily and note who was taking care of her.
Note that my ex has her 4 days a month and I have her the other 27.

Can you hear me beating my head against a wall?

2009-11-13T13:19:00.002-06:00

Wow! What a week! CNA class started on Monday. We sit in class for 4 hours and have one 10 minute break, there is that much to cover. Unbenownst to me, I had to have a TB test which required a trip to the county board of health. Next week, I register for Anatomy class. I spent some time making sure my login to the college website works and chose the session I wanted to take which will be M from 6-9 and Wednesday from 6-7:45. I took Emily to the behavioral therapist for her session. I took me to my clinic visit at the U of C. As of right now, I am the U of C patient who has been on the trial the longest, almost one year. WOW! There are some negotiations that my clinic visits might get less frequent. WOOHOOOOO! It would be so nice NOT to travel back and forth once or twice a month. My next scan is the week of Dec 18. I will get results after CHristmas which is a small blessing. Yesterday, I went to the college to take the Math assessment. As it's been over 20 years since I have seen an Algebra problem, they would not accept any Math credits taken in college or high school as a satisfaction of the Math requirement for the Nursing program but, they did allow me to take an assessment test. If I tested high enough, the Math requirement would be waved. I sat down and started at it. Some questions were easy but as I went along, the problems got harder and harder. OMG! I'm sunk, I thought to myself. I was fully prepared to go home and peruse the catalog looking for a class that I could fit in. When the test was over, I walked over to the administrators for my results and found out...I TESTED OUT!!! I was dumbfounded! Turns out that every time I answered a problem right, the next problem would be harder. I did so well in Algebra, they were testing me on Advanced Math. Not only did I test out of college Algebra, I tested out of the first Semester of the Advanced class. Knock me over with a feather!

Today, I am writing up my accomplishments for the year at my full time job. I work for a large Telecommunications Company. Until recently, I was pretty proud of all that I acheived here. When I started at the company in 1995, I was newly separated, raising two small children, working 3 jobs, had filed a recent bankrupcy and was fighting with the red tape of debt and divorce. I was in the process of switching my career from Restaurant Management to a career to be named later and accepted a job as a Customer Service Rep with a small company called Advantis, an IBM/Sears merger, that focused on Network and LAN support for the Sears family, retail, Dean Witter, Coldwell Banker, Allstate and Sears. I can't tell you how intimidated I was by this job and in fear, I almost didn't take it. I had a wonderfully supportive boss who I liked a great deal and little bit by little bit, I learned the job well enough to be promoted to team leader. I was good at it. Good enough to be recognized and I was then promoted to Network Support where I worked for 5 years. I liked every single one of my bosses. I liked the company. I felt as if I was part of a team and that my presence mattered. My bosses wanted me to learn as much as possible and encouraged classes, encouraged reaching for the next level, encouraged me to do as good a job as possible. This was the field that I wanted. TELECOMM! Glorious routers! Fun circut testing! CCNA Classes! In 1999, we were sold. Jobs went overseas. MANY jobs went overseas in 2004. I was spared and was then working in Procurement and for the most part liked my new boss but, the organization was split in 2005 and I was moved to a different organizational tier with a new boss. Centers were closed. Co-workers were sent overseas to train their replacements, then laid off. To prove my worth, to compete with cheaper labor overseas, we all worked like dogs. THe company never told us we were worth anything. OH sure they sent out the mails telling us how great we did and then months later, they would announce the new job cuts. They did tell us yearly that more cuts would be made, more jobs would be offshored and outsourced and we all got used to living in the uncomfortable position under the axe. I lived in fear of lay off. I fretted every mistake. I worked hours and hours and hours. Then, I was diagnosed with cancer in 2006. My boss rallied around me while I went through that. Despite treatments, I put in a 12-14 hour day. If I worked any less, I felt I wasn't pulling my weight. Nevertheless my reviews for all those hours were "Meets expectations" with a nice write up about all the great things I did to show the higher ups that I did something that year. I went on disability on Oct 1, 2006. I went through surgery. I returned to work on Dec 1, 2006. I waited for my life to return to what it was before it was rudely interrupted. It never did. I tried a new role and did fairly well but my heart wasn't in it. I was put on a large account that challenged every fiber of my being. Then I was diagnosed with lung mets and returned to treatment. My boss is weary of what she calls my "Personal issues". In July, after 14 years of good reviews, I received my first negative one. My personal issues, she said, interfered too much. I didn't do this. I didn't do that. I made too many mistakes. It was all a failure. Today, I am writing my accomplishments for the year. I look at my 5 page write up of what I did at work this year, all the purchase orders I created, conference calls I was on, problems I identified and realize that all those things are just a bunch of gobblity gook that reflect no accomplishment that means anything. There is nothing that I write on that sheet, no statistic I can show my boss that reflects the REAL accomplishments and successes. I know she doesn't get it. SHe's crunching numbers. She's spitting out a formula that measures out how much I was worth based on some rubric defined by Six Sigma. Dear boss, if you find this blog, here are my real accomplishments.
1) I showed up to work every day. Somedays were hard. Somedays, I was tired and lightheaded because of my medications but I was there, sitting in my desk, trying to handle the diagnosis, the medication and the huge work load I had. No other employee handled, could handle, nor would handle what I did. I'm sorry if you feel it wasn't good enough. I gave all I had. I can say that with no guilt. I know there are things I could have done better but I did the best I could with what I had to work with.
2) I am no longer afraid of a swinging axe. I'm facing cancer. You're not. If the worst thing that can happen to you is a layoff, you are lucky.
3) I learned how to LIVE with cancer. Most people fear those of us who have cancer, shy away, back away, treat what they don't understand and fear the most with disdain. I've had my share of that this year. I hope you never find out what it is like to be a patient. I hope your boss spares you some of the same treatment I got this year if you ever are. I love my friends with cancer and love my friends without it. I've mourned many losses this year. I've watched children and adults, young and old die. Their stories are a part of me. You never knew how much I mourned or how often but I was here every day, at my desk.
4) I accept that there are worse things than death. Not living and foraging forward, learning, being stuck in one place, is far scarier. I am foraging forward and I am not afriad.
My job was a constant in my life and for now, I am doing it. I will do what I am told. THere was a quote I had at my desk for many years. It said, "The Lord will never leave you empty. WHen He asks you to put something down, He wants you to pick up something greater." I am breathless waiting to see what that something greater is but it doesn't mean I'm not mourning what I am being asked to put down.

2009-11-05T07:37:00.002-06:00

Now that the holidays are fast approaching, I want to shout out to all those that are dealing with cancer, any disease or the recent loss of a loved one. My mother passed away suddenly on April 17, 1985. By Thanksgiving, there was only a very small scab on the wound as there is no timetable on when we should start snapping out of it. We were going through the motions but seemed to be lacking spirit, life. I had started my freshman year of college and when I came home for the holidays, I tried to help make Christmas what it was when mom was alive. I made cookies, helped cook, set the table like mom would have partially because it was something routine in a situation that just wasn't and because I thought it would be comforting to have so many of her things around over the holidays. Needless to say, it didn't work out that way. My father was glum. My grandparents sat at the table and cried. Opening presents wasn't the huge thrill it used to be. We moped around the entire holiday, the most wonderful time of the year, and pretty much decided that everything just stunk! It was OK to be Scrooge. It was OK to say BAH HUMBUG! It was OK to mourn over the holidays and NOT be happy. I'm sure the year after Jesus was crucified, Mary didn't celebrate her Son's birthday with a huge smile. She was blessed but still a mom who lost her Son, her child. Don't think God doesn't understand. I'm sure Mary read Him the riot act and did her fair share of asking Why's. I can only hope and pray that you do find ONE thing over the holidays that comforts you, one shred of happiness, one understanding friend that will help you mourn during the "Happiest" time of the year.

I'm sorry this isn't the happiest of updates. At the moment, I am well. I feel well. I have energy and other then the tri-weekly bloodwork, I don't have to worry about scans for another month. I started taking some digestive enzymes, some amino acids that I put in my juice every day, and I added Spirulina, a major superfood to my already vegetable and fruit laden diet. I did a little research on all 3 and feel they can be beneficial. Halloween went great for the kids and I start my CNA class on Monday. Last night, was the orientation. As I thumbed through the textbook, I began to wonder if I could do this, perhaps I had doubts because the first chapter I opened was about bedpans, adult diapers and portable potties but, I am a mom and have changed some really awful diapers in my day. Emily and Cassie's were legendary. That is merely a small part of a much larger picture. I'll be doing my clinicals at a local long term care facility. I have already perused the wanted ads for CNA's at the local hospital and paused at the need for an aide in Oncology. That, I think, is where I would like to work. Two years ago, heck LAST year, I never would have considered working with cancer patients on any level and my reasons were not that I did not have compassion or did not understand. I was afraid of facing my own mortality. I was afraid I would internalize the suffering. I was afraid of hearing something I did not want to hear and seeing something I did not want to see. I was afraid of grieving for those that did not make it. My Orthopedic Oncologist told me that yes, it's heart breaking sometimes but not to let that detract me from the larger picture and that is the human impact, the inspiration and the lessons that can be learned every day. If you look really hard, there are bits of beauty in every story. Focus on that.

Hangin out

2009-10-23T11:35:00.002-05:00

There has not been too much to update lately. I've been immersed in all the non cancerous aspects of life which take up the most time. Kris has been emphatic about the driving lessons. Every day, he asks if he can drive me somewhere and if he hears me grab my purse, he'll call out "CAN I DRIVE?" Ugh! THere are just sometimes, I want to drive, get to where I want to go, do what I need to do and leave but I understand the need for him to get road time so I hand him the keys, hang on to the "OH CRAP!" bar and pray silently for a safe deliverance. As my son seems to think he's Mario Andretti and not a student driver, I'll catch him trying to drive with his pinkies on the wheel and not his hands, scope girls, and delve into the space zone. I still do not feel at ease. I'm not sure I ever will. The other day, I silently snuck out of the house. HEE HEE!
A few weeks ago, I took Emily and Kris to get their eyes checked. Kris has Astigmatism and needed a new prescription. Emily needed an exam because our schools no longer do any screenings. I had thought it was a tad too soon for a 5 year old but I was sick of all the "We're going to kick your kid out of school" letters. So, under protest I took her and........she needed glasses. BAH! A little egg on the face, I guess. She has Astigmatisn AND a lazy eye which requires her to wear an eye patch for 2 hours every morning. She absolutely HATES it. It's going to be a fun two months until her re-evaluation.
Cassie, well, she's her hormonal self but is doing well in school and is having fun.

Confirmation classes are going well. For all the protesting my son did about this whole adventure, he volunteered to help set up the teen mass. Both kids will be participating in a retreat in early November and are griping that it will take all day. I'm taking bets they will have fun.

As for me, I'm busy advocating for Sarcoma where I can, supporting patients and families where I can, and am taking a Math test next week that will determine if I need to take Algebra before applying for Nursing school. My CNA class was bumped to start in November which did not make me happy. Instead of starting MOnday and ending Mid December, we'll be starting Nov 9 and ending Jan 11. If all goes well, I'll be signed up for Anatomy class which will start Jan 18 and will have no time to regroup before the next classes.
Next weekend is Halloween and as is tradition, I make a big pot of Chilli, invite the neighbors and we toss back a beer or two while I wait for the kids to bring me back some candy. Last year, I was re-diagnosed on Halloween and didn't feel like having any sort of party. This year, what the hey? PARTY ON! Of course, I'll be making a vegetarian version for me but I can vicariously enjoy the other and will need to taste it to make sure it's good enough to serve. All who happen to be in town can stop by. If not, we always have a good New Years get together. NYE has never been my favorite holiday.
1) I married my ex husband on NYE, 1993.
2) After I divorced, I was stood up 3 years in a row on NYE and spent it by myself and two sleeping kids.
So, I make my own party now. Our annual party is on year 5 and going strong. I encourage people to bring their sleeping bags. My brother and I supply Continental breakfast and a few movies on New Years Day and later on, we order pizza. It's always been fun. As Emily is going with her dad this year, we're thinking a nice dinner out before champagne and chips at my house in order.

Every year, The Schaumburg High School Saxons Band does a concert to benefit a charity. Kris and Cassie would like to put the cause of Sarcoma up for consideration but we need some presentation ideas. We'd like to make the donation to either the Sarcoma Foundation of America, Nick and Friends Sarcoma Foundation, the MD ANderson Hope Fund or split it among all three as each charity benefits patients in a different way. If any creative people out there have ideas for this presentation, email me. The concerts have traditionally brought in 1K to 2K. This would be such a great donation for such a great cause.
We need a cure..

and a happy anniversary to me....

2009-10-13T16:26:00.002-05:00

3 years ago today, I woke up with the birds and was denied my usual steaming cup of coffee. I threw my hair back in a ponytail holder and grabbed a small overnight bag filled with crossword puzzles, books, and a change of clothes and drove with my dad to the Univsersity of Chicago. I was scheduled for surgery at 7am. Check in was at 6am. I remember feeling pretty numb. I remember pondering the significance of having surgery on Friday the 13th. Would it be my LUCKY day? When we arrived at the hospital, it was still dark outside. The surgical waiting area looked like a library with comfy chairs and books and magazines on shelves and shelves. I remember a flurry of Dr's and nurses all asking me questions, reciting instructions, handing me the GOWN, asking for my signature on financial forms, consent forms and the formidable "Power of Attorney" forms. I signed over my ability to make medical decisions for myself to my dad should I become incapacitated and I was wheeled into surgery. I was lying there pretty still watching the chaos around me. The last thing I remember was watching a nurse or resident grab some latex gloves and the next memory was of a nurse lightly hitting me on the cheeks telling me surgery was over. I remember being confused. Had surgery even started? I remember hoisting myself off the table onto a guerney and the nurses being awfully surprised that I could do that. I guess I didn't know I couldn't. I remember being wheeled into ICU and the family filing in. I had no idea what time it was or even who I was for a little while. I remember taking stock of the tubes and machines, incisions and drains that I was hooked up to. I was listening to my family give me the play by play describing what had happened to me in that 13 hour long surgery.
One of my Dr's, my Radiation Oncologist, indicated surgery would be the gateway back to the life I had before. Go through this surgery and I could put cancer behind me. He was so wrong. It was a gateway alright but not to a place I would have chosen for myself. It was a gateway into a whole new world. Cancer never did take its proper place, the PAST.
Today, three years later, I woke up. I had my steaming hot cup of coffee. I checked my email, grabbed my purse and took the familiar trip to the University of Chicago. I was sent for blood work then headed back to the wait area. As I waited in the exam room, I heard my Dr's conversation with another Sarcoma patient who had just started her journey. I heard fear and confusion in her voice as the Dr. wrote the script for the CT and blood work he wanted. I remember when that person was me. Three years later, the path is different. THe person is different. The desires and hopes and dreams are different. It's been an interesting three years. These three years have changed me, shaped me, created something new. In some ways Friday, Oct 13, 2006 WAS my lucky day but back then, I never would have labeled it such. I would have lamented the past that brought me to that moment. Now, I look at that date as a sort of rebirth. The minute I emerged from surgery, I was changed physically and emotionally. Now, I look to the future it has created for me and feel grateful for all the Dr's and nurses, patients and friends that helped me get here. Now, I hope to pay it forward.

AHHH Motherhood!

2009-10-07T10:48:00.003-05:00

I received this little gem in my inbox the other day.
25 REASONS I'VE LEARNED TO APPRECIATE MY MOTHER:

1. My mother taught me TO APPRECIATE A JOB WELL DONE .
'If you're going to kill each other, do it outside. I just finished
cleaning.'

2. My mother taught me RELIGION.
'You better pray that will come out of the carpet.'

3. My mother taught me about TIME TRAVEL .
'If you don't straighten up, I'm going to knock you into the middle of
next week!'

4. My mother taught me LOGIC.
' Because I said so, that's why .'

5. My mother taught me MORE LOGIC .
'If you fall out of that swing and break your neck, you're not going to
the store with me.'

6. My mother taught me FORESIGHT.
'Make sure you wear clean underwear, in case you're in an accident.'

7. My mother taught me IRONY
'Keep crying, and I'll give you something to cry about.'

8. My mother taught me about the science of OSMOSIS.
'Shut your mouth and eat your supper.'

9. My mother taught me about CONTORTIONISM .
'Will you look at that dirt on the back of your neck!'

10. My mother taught me about STAMINA.
'You'll sit there until all that spinach is gone.'

11. My mother taught me about WEATHER.
'This room of yours looks as if a tornado went through it.'

12. My mother taught me about HYPOCRISY.
'If I told you once, I've told you a million times. Don't exaggerate!'

13. My mother taught me the CIRCLE OF LIFE .
'I brought you into this world, and I can take you out.'

14. My mother taught me about BEHAVIOR MODIFICATION.
'Stop acting like your father!'

15. My mother taught me about ENVY.
'There are millions of less fortunate children in this world who don't
have wonderful parents like you do.'

16. My mother taught me about ANTICIPATION.
'Just wait until we get home.'

17.. My mother taught me about RECEIVING .
'You are going to get it when you get home!'

18. My mother taught me MEDICAL SCIENCE.
'If you don't stop crossing your eyes, they are going to freeze that
way.'

19. My mother taught me ESP..
'Put your sweater on; don't you think I know when you are cold?'

20. My mother taught me HUMOR.
'When that lawn mower cuts off your foot, don't come running to me.'

21. My mother taught me HOW TO BECOME AN ADULT .
'If you don't eat your vegetables, you'll never grow up.'

22. My mother taught me GENETICS.
'You're just like your father.'

23. My mother taught me about my ROOTS.
'Shut that door behind you... Do you think you were born in a barn?'

24. My mother taught me WISDOM.
'When you get to be my age, you'll understand.'

25. And my favorite: My mother taught me about JUSTICE
'One day you'll have kids, and I hope they turn out just like you.'

If I thought cancer was tough, try teenagers. Now, I know I am dealing with the usual teen angst but it doesn't make it any easier. My 16 year old son suffers from an intolerable lack of motivation and a sense of self entitlement that is just mind boggling. The child knows the rules. As I've been dealing with a swarm of fruit flies, I have been trying and failing to find the source. The other day, I went into my son's room downstairs in the basement, a room he fondly calls "The Man Cave!" and opened his closet. Inside was an empty cereal box and a few juice box wrappers. As the rule is NO EATING DOWNSTAIRS and he knows this, I excavated the rest of his room and found under his bed, empty DelMOnte fruit cups, empty boxes of fruit roll ups, spoons, forks, a couple empty cereal bowls with spoons stuck to them, dirty socks, candy wrappers, clothes that have been missing for months and an empty shoe box. I moved the bed out of the way and swept everything to the center of Kris's room. I then proceeded to excavate drawers and the area behind his dresser and to my dismay found more of the same. Perhaps the fruit flies came from the apple core that was petrified behind the night table or the dried cat yak or the spilled coca cola that oozed into a sticky mess on the floor and had a sock stuck to it. IT's a mystery. I left it for him to clean when he returned home. After checking his grades online, I tried to have a meaningful conversation with my son and was met with snide remarks, sarcasm, no sense of remorse, no responsibility and a flip comment that I should just be happy that all he did was eat too much. Feeling that I was losing my cool, I exited stage left after resorting to one of the above list of cliches. My son is bright and he can be doing so much more but he's lazy and he's careless and right now, I am resigned to the fact that I will watch this child fall on his butt many times in life and will hope that he learns from it and will pray that I can handle watching this child fall. My son will say I have little faith in him. I am not 100% sure that that is the case. I have given my son ample opportunities to prove that he is trustworthy, a discussion he and I have had 100 times and falls on deaf ears. He just simply has not risen to the occasion to prove himself and it seems that nothing that I do helps. I'm frustrated. Very frustrated. After watching me work two, three jobs, agonize over bills, go through cancer, move mountains to give them good Christmases, he has totally gleaned the wrong message from all my hard work. The message he has gotten is that I will do it. He is not responsible for anything that he does. He does not deserve any consequences he gets. College is a right, not a privilege. Subpar work should result in accolades. UGH! My boy has a bit of his father in him. My ex is living at home at the age of 47, walked away from his kids 5 years ago, has never paid child support, shown the kids any consistency with visitation, wound up in jail for drug dealing, is an alcoholic and blames ME for his lousy life. Funny how he heard his father's message loud and clear but not mine.
TOugh Love!
Last year, my son racked up a 200 dollar cell phone bill texting and downloading. I took away his phone for a month with a stern warning that one more time would result in me turning it off. Sure enough, within one month he racked up a 400 dollar bill doing the same. His cell phone was turned off. Who cares? He said. I'll get a job and get my own phone. Suit yourself! He still has no job and still has no phone.
Last year, my son after destroying his bike, used my daughters, left it in the backyard of a friends house and it was stolen. He still does not understand why I'm angry. He will buy her a new bike when he gets a job (ahh the job. the job he hasn't applied for yet!). I grounded him from playing in the baseball tournament. Did that help? OF COURSE NOT! His paternal grandfather was so upset with ME for grounding my son, he took a poll, yes a POLL of his friends and family to determine if I was unfair. Guess who came up with the short straw. Not the irresponsible teenager, ME. TO this day, my son only heard that I was unfair and he didn't deserve the punishment and who steals a bike from the back of the house anyway?! To really add insult to injury, he snuck out of the house and played a tournament game anyway while I was at work. I grounded him from drivers ed. That actually went somewhere. I told him that if he doesn't follow the rules, there won't be a signature for the drivers license test. Who cares? He said...He'll be 18 in a year and won't need a signature and when he gets that job he can afford his own car and insurance. I can only laugh to keep from crying.

PPS: I have two prayer requests. Two children, Sammie H and Jessica E are nearing the end of their Earthly life. Sammie, 12, has Osteosarcoma. Jessica is 7 days shy of her 11th birthday and so wants to spend it here on Earth. She has Rhabomyosarcoma. Please pray for these two children and their families. Pray Jessica can celebrate her 11th birthday with her family and for strength for the days ahead for those left behind.

A Sarcoma Fund

2009-10-02T09:46:00.003-05:00

This morning, I was reading a blog entry by a woman whose daughter is a two year Ewing's Sarcoma survivor.
She mentioned that last year, the huge fundraiser "Stand Up to Cancer" brought millions of dollars in for cancer research. Not one penny was given to the cause of Childhood Cancer Research. I was floored, especially since some of the emotional pitches to donate for the cure, featured children. I was then curious to see how many research dollars raised by Hollywood actually went towards rare diseases. Though I have never articulated anything about prognosis for my subtype of Sarcoma, it's dismal and I know it is. Malignant Peripheral Nerve Sheath Tumor is a tumor with no treatment options. Only 100 are diagnosed with this subtype yearly and currently 900 out of the population are struggling with this tumor, the majority are children. The tumor is most commonly found in patients with Neurofibromatosis 1. Whereas I do not have NF, my cousin does. It could be coincidence or it might be indicative of a genetic link. The 5 year prognosis for MPNST in NF1 patients is 25%. The 5 year prognosis for those of use without NF1 is 54%. This is breast cancer awareness month and the halls are painted pink. No one, not one of us, minimizes the vehement nature of breast cancer. My cousin passed away of metastatic breast cancer in the 90's at age 38. But, the difference is funding. The difference is options. The difference is the number of Oncologists knowledgeable enough about this disease. The difference is awareness. MPNST is usually treated with the AIM regimen. If that fails, there is no second line offensive. For the low grade MPNST that I have, there are NO options, none, zip, zero, nada in mainstream medicine that does not fall outside the experimental realm. There are only a handfull of Oncologists nationwide that know anything about MPNST, a tumor that is still a mystery. When I did a search to discover how many funds were allocated by "Stand UP to Cancer" to Sarcoma research, I couldn't find anything. I did find the below article which made me smile and brought me to tears. SOMEONE is putting some focus on this tumor! Thank you MD Anderson! Yes, there are only 100 of us diagnosed yearly. 100 is not the 200K that will be diagnosed with breast cancer but is the life of a woman with breast cancer worth more than the life of a woman with a Sarcoma? Are her children more important, more worthy of growing up with a mother? Are the children diagnosed with MPNST each year, expendable? My hope and prayer is that someday, patients with Sarcoma can share in the same hope and the same success that women with breast cancer have. All cancers may not be the same, but all life is equal. I will add the HOPE fund to my list of great causes to support. I ask my sisters fighting breast cancer to help us spread the word. Sarcoma can occur anywhere and I have known several women with Sarcomas in the breast, uterus, ovaries, vagina and cervix. Together, we all can make a difference for all forms of cancer. Soap box ending.

The Hope Fund for Sarcoma Research, NFCR, Form Team to Solve Mysteries of Rare Cancer

(Bethesda, Md., March 28, 2008) — A rare type of tumor, MPNST (Malignant Peripheral Nerve Sheath Tumor), may soon be giving up its secrets to scientists on two continents who are teaming up to carry out systematic studies to explore its genetic makeup.

The Hope Fund for Sarcoma Research, a donor-advised fund in partnership with the National Foundation for Cancer Research (NFCR), is teaming up with scientists from M.D. Anderson Cancer Center in the United States and from Tianjin Medical University Cancer Institute and Hospital in Tianjin, China, to perform molecular and genetic analyses on Malignant Peripheral Nerve Sheath Tumors (MPNST) tissues to identify disease-related genes, pathways and biomarkers that may lead to novel therapies.

Sarcoma is a rare type of cancer and MPNSTs are a rare subtype of soft tissue sarcoma originating from the connective tissues surrounding the nerves; they account for about 5-10 percent of all soft tissue sarcomas. The tumors readily metastasize, and according to researchers, there are no effective treatments available for the metastatic MPNSTs. “To date, there have been no systematic studies using genome-wide approaches to gain a comprehensive understanding of MPNST. This lack of analysis has hindered the development of therapeutics,” said Marianne Bouldin, a founder of the Hope Fund. “We believe that this collaborative effort will help to create a network for shared resources and new technological advances in understanding MPNST.”

The Bouldins founded the Hope Fund after their daughter, Jennifer, survived the rare cancer which affects only an estimated 900 people in the United States. “There was so little information available to us at that time, and only one standard treatment option for this type of cancer,” says Bouldin. “Our goal is not only to raise awareness of MPNST, but to work with the international scientific communities to develop an effective cure that would offer hope to other patients and their families. The project is the second effort backed by the Hope Fund, which is working to build collaboration among sarcoma researchers, as well as to create synergy between scientific organizations around the world”, Bouldin continued.

The two groups in the US and China that have joined efforts for this project are well-versed in sarcoma research. The M.D. Anderson Cancer Center‘s Sarcoma Center sees 20 percent of all sarcoma patients in the US annually, making it one of the leading research and treatment facilities in the United States. Tianjin Medical University Cancer Institute and Hospital is recognized as the birthplace of Chinese oncology, and the hospital has established a Joint Tissue Banking facility with support from NFCR in 2004, where a multitude of valuable MPNST tumor tissues have been collected and are available for research.

Members of the collaborative team include Anderson’s Dr. Wei Zhang, an NFCR-funded scientist and Director of the Cancer Genomics Core Laboratory, who will be providing innovative genomic technologies to the program, along with Dr. Jon Trent, a sarcoma oncologist, Dr. Dina Lev, a Hope Fund-supported sarcoma investigator, and Dr. Raphael Pollock, Director of the Sarcoma Center.

Other critical investigators in the team include surgeon Dr. Kelly Hunt, sarcoma pathologist Dr. Alex Lazar, and sarcoma oncologist Dr. Robert Benjamin.

In China, the team will be headed by Tianjin Cancer Hospital’s surgeon Dr. Jilong Yang; Dr. Kexin Chen, Chairman of the hospital’s Department of Epidemiology and Biostatistics and Director of the Joint Tissue Banking Facility, which will provide critical support to this project and future projects on sarcoma.

The powerful technologies that this team will bring to the network include whole genome gene expression profiling, array CGH, microRNA profiling, Tissue Microarray, and reverse phase protein lysate arrays.

“Our objective for this discovery research project is to use microarray-based comparative genome hybridization (aCGH) and other cutting-edge technologies to perform a systematic study of a relatively large number of MPNST samples,” said Dr. Wei Zhang. “We anticipate that these analyses will reveal major genetic and molecular signatures for MPNST, thus providing an important understanding of not only the cause but also of potential therapeutic targets for this disease. Candidate genes will be sequenced to identify mutations for comparison with information from a relevant database connected with the NCI (National Cancer Institute). This study will contribute valuable information for future research into the cause and therapy of MPNST.”

About the Hope Fund for Sarcoma Research

The Hope Fund for Sarcoma Research is dedicated to supporting research on Soft Tissue Sarcomas, a group of rare but deadly cancers. The Hope Fund is currently supporting a two-year project led by Dina Lev, M.D., at the M.D. Anderson Cancer Center, as well as a high powered international collaboration led by Wei Zhang, Ph.D., also at the M.D. Anderson Cancer Center. The team of collaborators includes Jonathan Trent, M.D., Ph.D. and Raphael Pollock, M.D., Ph.D., Director of the Sarcoma Center, at the M.D. Anderson Cancer Center, as well as Jilong Yang, M.D., and Kexin Chen, M.D., Ph.D., Director of the Joint Tissue Banking Facility at the Tianjin Cancer Institute and Hospital. These projects focus on molecular and genetic analyses and identification of new biomarkers in Soft Tissue Sarcomas, in particular Malignant Peripheral Nerve Sheath Tumors (MPNST). Progress in these important areas may lead to new and better treatments for MPNST and other Soft Tissue Sarcomas. For more information, contact: www.nfcr.org/hopefund.

About NFCR

The National Foundation for Cancer Research (NFCR) was founded in 1973 to support cancer research and public education relating to earlier prevention, better diagnosis, new and more effective treatments, and ultimately cures for all types of cancer. NFCR promotes and facilitates collaboration among scientists to accelerate the pace of discovery from bench to bedside.

To date, NFCR has provided over $250 million in support of discovery-oriented basic research focused on understanding how and why cells become cancerous and on cancer prevention. NFCR’s scientists are unraveling cancer’s molecular mysteries and translating these discoveries into therapies that hold great promise for curing cancer. NFCR is about Research for a Cure—cures for all types of cancer. For more information, visit www.NFCR.org or call (800) 321-CURE.

# # #

Media Contact
Silas Deane
National Foundation for Cancer Research
Phone: 301.961.9105
E-mail: sdeane@nfcr.org

2009-09-29T08:21:00.002-05:00

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.

Scan results

2009-09-22T14:24:00.002-05:00

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...

2009-09-20T09:05:00.002-05:00

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..

2009-09-14T11:02:00.002-05:00

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.

2009-09-10T07:51:00.002-05:00

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

This week in Pictures

2009-09-08T09:53:00.008-05:00

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

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

A "my mundane life update"

2009-09-02T23:02:00.004-05:00

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

Another good idea for Childhood Cancer Awareness Month

2009-09-01T17:01:00.002-05:00

JUST $1.00 CAN MAKE A DIFFERENCE

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

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

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

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

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

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

September is Childhood Cancer Awareness month

2009-08-29T21:23:00.001-05:00

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

2009-08-26T07:39:00.002-05:00

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.

2009-08-24T11:20:00.002-05:00

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....

2009-08-20T20:48:00.002-05:00

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

2009-08-19T14:38:00.002-05:00

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

2009-08-17T09:24:00.004-05:00

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

2009-08-11T16:29:00.003-05:00

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