Tuesday, September 28, 2010

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.

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Friday, September 24, 2010

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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Wednesday, September 15, 2010

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

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

Monday, September 13, 2010

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.

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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Tuesday, September 07, 2010

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.

Wednesday, September 01, 2010

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.