Wednesday, October 27, 2010

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,, 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

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.

Tuesday, October 19, 2010

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!!


Sunday, October 10, 2010

Our sarcoma car made the finals!!!

This could mean awareness and funding for the cause.
You can vote every day from every computer available :)

Thursday, October 07, 2010

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.