Friday, October 23, 2009

Hangin out

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..

Tuesday, October 13, 2009

and a happy anniversary to me....

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.

Wednesday, October 07, 2009

AHHH Motherhood!

I received this little gem in my inbox the other day.

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

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

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.

Friday, October 02, 2009

A Sarcoma Fund

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:

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 or call (800) 321-CURE.

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Media Contact
Silas Deane
National Foundation for Cancer Research
Phone: 301.961.9105