A New Year

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.

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!

______________________________________________________

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

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!

http://www.greatbooksforu.com
http://www.greatdvdsforu.com

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..

http://www.greatbooksforu.com
http://www.greatdvdsforu.com

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.
_____________________________________________________________________
Http://www.greatbooksforu.com
http://www.greatdvdsforu.com

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

____________________________________________________________________________________
http://www.greatbooksforu.com
http://www.greatdvdsforu.com

Our sarcoma car made the finals!!!

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..

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

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.
____________________________________________________________________________________

My Book Store
My DVD Store

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.

My Book store
My DVD Store

Blog

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

Please help us with our nascar. Thank you for all your clicks.
http://www.sponsafier.com/#/gallery/view/360505

Sarcoma Fundraiser!

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!

My book store
My DVD store
My Blog

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....

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

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

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

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

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

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

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

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

More odds and ends and bits and pieces..

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

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

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

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

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

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

www.greatbooksforu.com
www.greatdvdsforu.com

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

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

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

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

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

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

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

Sarcoma Awareness Week

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

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