Thursday, December 31, 2009

Goodbye 2009

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

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

Tuesday, December 29, 2009

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

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

Monday, December 21, 2009

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

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

Monday, December 07, 2009

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

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

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

Thursday, November 26, 2009

Happy Thanksgiving!

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

Thursday, November 19, 2009

A little bump in the road.

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

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

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

Can you hear me beating my head against a wall?

Friday, November 13, 2009

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

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

Thursday, November 05, 2009

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

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

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.

# # #

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

Tuesday, September 29, 2009

Life has been busy this week!
I have forwarded in that application for the CNA class and paid the application fee. I got a call back yesterday to expect a letter confirming the orientation date and the kids have been briefed on protocol while I finish this class. Big Box Mart was pretty accomodating so all is a go. I filled out my FAFSA and of course am not eligible for a shred of aid but I knew I wouldn't be. As the FAFSA does not take into account things like mortgages and medical bills, I'll be writing a letter to the college financial aid dept explaining special circumstances.
To celebrate stable scans, I took the kids out to their favorite Chinese restaurant and allowed Kris to drive. We then went shopping at the health food store and Barnes and Noble for the novels they are reading this year. Kris will be reading "THe Catcher in the RYe" and "The Great Gatsby", two I really enjoyed. I majored in Psychology and English in college and read LOTS of books. I found that when real life hit, I couldn't read as much. Two years ago, my New Years resolution was to read more. I won an auction on EBAY for 40 Oprah Book Club selections and have been slowly working my way through the pile. "Fall on Your Knees", "She's Come Undone", and "Songs in Ordinary Time" were excellent. I would also recommend "God of Animals". As an aside, my daughter recommended the "Twilight" series. As my daughter never reads, the fact that she would recommend anything was a big surprise. I finished Twilight in 24 hours and fail to see what the fuss is about. I couldn't stand, Bella, the protagonist and Edward was too perfect. Maybe books about spoiled, bratty teenagers aren't high on my list especially when the novel had no discernable plot, was predictable as the day is long, and flowed like a rocky stream. Nevertheless, I read "New Moon" and made it 3/4 of the way through "Eclipse" before I put the book down. When I wished Bella would get eaten by the baddy vampiress, Victoria, I knew that it was a lost cause. Please Edward, get killed by the Volturi and spare us the agony of having to read this drivel. Join Anna Karenina by throwing yourself in front of that train! I am good about keeping my opinion to myself when giggling teenage girls bring those Twilight posters, books, pins and tee shirts through my checkout line. I am currently reading a book called "Drowning Ruth" ....MUCH MUCH better!
Saturday night was Homecoming and both kids decided to go stag. Kris decided he'd have much more fun with his friends and Cass went with her friend Angela and Angela's boyfriend. While they were out dancing, my brother and I went out for dinner and then downtown to see a friends band play at a dive bar in Chicago. This bar is what one envisions when the words "dive bar" are strung together in the same sentence. The bar stools were so old, the seats slanted and I had to prop myself up by putting both legs on another bar stool. The woman's bathroom had no lock. The door handle was broken and swinging loosely. Someone had installed a hook but, there was no ring installed so the hook was essentially useless. I tried to use the bathroom, I really did but I just couldn't do it. I went back to my slanty bar stool and opted not to drink anymore fluids while hoping the bladder would hold out until we got home. I can only laugh at the experience and smile that my brothers friend is a different person when jamming on his guitar.
On Thursday night, the children pulled two kittens from our front bushes. A mama cat had a litter of 4 kittens that she has been moving from house to house in her little territory. Last week, we rescued one of the kittens from the woodpile across the street and my neighbor, gave the kitten a home. Mama had been in the process of moving the litter and my bushes served to be a home to her last week. The children were able to get two of the remaining three. Mama cat grabbed the little calico and ran with her and in my basement right now is an orange tabby with white feet and a white cat with dark gray spots, one female, one male about 6 weeks old. We had originally thought to drop them off at a shelter but none of the shelters are taking kittens or any cats at all. Sooo, they have made themselves quite comfortable in the spare room. The first day or so, they hid but it's amazing what a bonding experience food can be. Now, they have names. The orange tabby is Lizzie and her brother is Louie. Lizzie is the sweetest most affectionate little kitten and just loves to sit on laps and be petted. Louie is all over the place and both are separated from the other three cats who aren't always welcoming. My son is upset with himself for bringing them in because it's obvious that they are now our cats and as I'm financially challenged, he was concerned about the added expense. As the wind is howling outside and the temperature has dropped about 30 degrees in two days, I told him he did a good thing and the kittens will be cared for and won't be outside having more kittens. Lizzie thanked Kris by crawling on his lap, cuddling in and purring. We are suckers all the way around. They had their first trip to the vet yesterday for deworming and an exam for Feline Leukemia and Feline Aids. Lizzie had stopped eating Sunday night and needed fluids. Both are in good shape.
That is all the news.
Today is my birthday and I will spend it working both my jobs. Emily is obsessed with my age for some reason and asks constantly how old I am. Last year, I told her I was 22. As Emily thinks anything older than 10 is ancient, so she bought the story hook, line, and sinker and tells all the neighbors mom is 22 years old. I love it :) The kids and I plan to have a birthday celebration the weekend before Halloween as it's the only weekend, we don't have plans already. That's all for this "my mundane life" update.

Tuesday, September 22, 2009

Scan results

still stable....
Now I am officially on that quarterly scan schedule and have added that news to my list of things to celebrate!
As I was complaining about the taste of that triple berry smoothie, Sue G was kind enough to mention that if I thought the triple berry was bad, wait till they hand me the banana or apple joy. Obviously, the hospital was on some psychic schedule with Sue and handed me the banana. Thanks Sue!

Last Tuesday, I had an appointment with a student advisor at the local community college. We had a great meeting and I was handed loads and loads of information about classes, pre-req's, scholarships and grants. I need to be a CNA and take Anatomy, Physiology and Algebra then take the NLN. I have been searching frantically for a CNA class that would satisfy the school requirement that I take the State licensing exam and be placed on the registry. Classes this semester at the community college are full but I had my name on a list for the Americare Institute's classes offered in October. My goal was to have this done before the Spring Semester as I am still working full time. Unfortunately, Americare only offers classes during the day and with a full time schedule at Ma Bell, that didn't work. I was disappointed with this news and decided that maybe I can buy extra vacation days and take two classes during the Spring semester. But, through chance, I found another vocational school that offers CNA classes at different times of the day. The paperwork has just been faxed and I stand to be very busy from Oct 26 - Dec 15 but I can then focus on the Anatomy class during the Spring and Physiology during the Summer. I am excited to start! This CNA class meets M-W from 6-10 with 5 clinical sessions on Sundays. I predict that I'll be going "gas can" on the kids more often than not during those 8 weeks.
As I was driving home today, I was just immersed in guilt, survivors guilt. I am extremely happy about the results of this trial so far, though I think I will forever be holding my breath. But I can't help thinking of those that are not quite as lucky. In my Sarcoma community, I see so much suffering in adults and children. The Liddy Shriver Sarcoma Initiative motto "Sarcoma knows no borders" aptly describes this disease but children seem to be hardest hit. Right now, I know of 3 children under the age of 18 that are home on Hospice with no options. I know countless others, mothers, fathers, grandparents and college students living with horrible pain. Right now, I'm lucky. It's a gift but not one I feel I deserve sometimes. I can only drive forward and try to make my life mean something. I feel very strongly that this is the way to go...

Sunday, September 20, 2009

Last night I had a certifiable hissy fit which is carrying into this morning.
In August 2008, I had decided to go back to school and finally finish that CCNA certificate I had wanted. As the job market was beginning to go South, I felt that this certificate would be a help to distinguish me from all the other laid off IT workers should it come to that. I signed on for 4 courses that were designed to help me pass the certification test that met on Monday and Wednesday nights from 6-10.
I knew it was going to be a demanding schedule. As I was up to my armpits on a huge account at work that resulted in working into the wee hours, my classes were an added stress. My schedule was this:
M and W class from 6-10
Thursday - Bowling night (I'm the league secretary. Added responsibility)
Friday - nights at Big Box Mart
Sat and Sun - Full 8 hour shifts at BIg Box Mart
Tuesday was my one day off and it was usually spent studying or catching up on work on my account.
I transferred the household duties to the children which is where the hissy fit came in. Though I was rediagnosed in November and could not finish the other two classes, the duties remain with the children and needless to say, my children have not exactly been supportive. Cassie's idea of cleaning is to throw everything in Emily's toybox, dirty laundry, dishes, garbage, papers, books, towels, brushes, old magazines, shoes. It's all in there and what falls behind the toybox, stays behind the toybox. When she cleans the bathroom, she skips the shower and the toilette. If garbage falls on the floor, it stays on the floor and usually swept behind the toilette which hasn't been cleaned for ages. I took the laundry duties back after 15 pairs of socks disappeared and I was looking at an empty closet. I had no idea where my clothes were. I went on a 4 day scavenger hunt and found clothes in the spare room under the bed, in the toybox, in my sons closet, under the stairs..... So, to spare myself from nudity, I do the wash WHILE I work my full time job during the day. My son loves to skip floor washing, sweeping, and essentially cleans like my daughter. Over the Summer, my son left an open gas can on the freezer in the garage. Instead of moving the gas can out of the way when he accessed the freezer, he just left it there so that it slid and toppled causing the gas can to spill behind the freezer. Then he left it there. I was so angry, I couldn't yell, couldn't speak. He could tell my displeasure by the popping veins and red face. That coniption has become a household legend. Fast forward to last night. My daughter had made some Hamburger Helper the other day and didn't feel like washing the pan. Instead, she placed some hot soapy water in the pan and left it by the sink. I reminded her Thursday, Friday and yesterday morning to clean the pan already because a swarm of flies was starting to buzz over it. I then went to my second job and of course worked HARD. We were phenomenally busy all day. I never had a break from a long line and was feeling a little punchy by the end of the day. I walked into my house and found that the dirty pan was still sitting there, not one paper had been thrown out, actually nothing had been done at all. The only change was a few new dishes piled inside the dirty pan and I was given some lame excuse by my daughter that Kris had not done his part in the kitchen and THAT is why she couldn't run a sink full of water and clean the pan. I.....BLEW.....UP! I went "Gas can" on the children.
I hate, hate, hate, sweating small stuff. I have enough big issues in my life to deal with and comparably, this is just small potatoes. Part of my ire is absolute disappointment in my children that while I work two jobs and fight cancer, they don't seem to feel that they should help out and treat what I work so hard for like it's nothing, as if I can just go outside to our newly planted money tree and pick off a few thousand to fix what they break or don't take care of. I know many that have lost children this year and I'm sure those that did would take the 4 day old dirty, fly ridden, pan if it meant that those children could be back with them. I feel guilty. But, I also know that these children need to grow up understanding compassion, sticking together, working together and learning respect for the property of others. I somehow seem to be failing at teaching them this lesson and whatever I try falls flat and I am out of ideas. For now, I have informed my son and daughter that there will be no driving lessons or accomodations to go to the Homecoming Dance next Saturday unless they finish their chores. We'll see how they do today. Will I be happy with the work they did or will I go "Gas Can" on them again?

Last week, they started their Confirmation classes. As the Catholic faith focuses on works, I'm hoping they learn a few lessons from the Community Service they are required to do in order to be confirmed. Maybe they can start with the mess in the garage..

Monday, September 14, 2009

I have one criteria for a successful healthcare reform bill. I want it to be crazy about life.
I have been very remiss about discussing it on my blog but as a cancer patient in the trenches, I have watched the debate with interest. A very disturbing discussion caused me to break my silence on the subject here because it related so much to what I have learned on my cancer journey. Politically, I'm an independent. I am Red on some issues. Blue on some issues and Purple on some issues. Political quizzes define me as Libertarian. I believe in the power of the individual and have witnessed throughout my journey, the beautiful things ONE person with passion can do. I have been shown first hand by all who I have met that life is beautiful and that everyone, regardless of who they are, rich, poor, disabled, young and old are threads in the tapestry that forms our Earth. When it comes to who I would trust with my life, I would trust my neighbor more than I would trust my Congress person. I think HR3200 is a terrible bill and I think we, as Americans can do better. We can come up with a uniquely American solution that will result in better access to a good plan, open up choices, preserve the jobs of 17% of our GDP, and does not force Dr.'s to become government employees. I do not want my personal medical info in the hands of the Federal Government more than it has to be to preserve my right to privacy and I can write volumes on how Government might stand in the way of the Right to Life guaranteed by the Constitution. On Friday, I responded to a status posting of a friend of mine regarding healthcare. He is very far left in his political viewpoint. I simply wrote that I am not anti reform. I am anti HR3200. I would also like the access to experiemental drugs preserved for those like me who have no other options because we have such rare diseases. My comment was met with a snide reply from another poster blasting me for supporting the demonic insurance industry and implied that my care should be put squarely in the hands of the American taxpayers to decide what kind of care I should have. This individual went onto say that everyone should have no better than Medicare and to cut costs, rationing should be implemented. Senior citizens and those with terminal diagnosis should be offered palliative care ONLY. They no longer have any worth to society and treating these individuals is not worth the cost to society. When I pulled my jaw off the floor, I decided it was time to walk away from the conversation for a bit and let the words of a self proclaimed compassionate human being who cares only of society, sink in.
This is an idea I have heard before. It was debated at length on a blog I used to follow. A grieving mother who had lost a child to Sarcoma, surmised that if those worthless seniors accepted the palliative care and not life saving treatment, more research dollars could have been allocated to pediatric cancer research. She devised an algorithm that spat out Return on Investment when we spend money on treatments for those nearing end of life. I ask who are we to decide the worth of a human life? How can we say that a senior who is 80, who may have helped build bridges, who may have developed a life saving surgery, who may be a beloved grandfather to many grandchildren is worth less than a 30 year old pimp and deserves nothing more than to be hauled in the back to be shot like an old dog. As he blasted insurance companies for putting a dollar amount on a human life, I pointed out he did the same thing. That isn't reform. When push comes to shove, I argued, a parent whose last option is an experimental treatment, would accept a smaller house or car to procure that treatment. His program trades health insurance for health CARE. He said I was delusional. If only he sees what I see every day in the cancer community.
I have seen spaghetti dinners, golf tournaments, corn hole toss tournaments, marathons, pancake breakfasts, concerts, chocolate sales, bake sales, arm band sales, shop and share programs, and church fundraisers set up to financially assist families struggling with the cost of treatment. I have seen parents sell their houses, sell their cars, because the life of their loved one is not replaceable. Houses and cars are.
I have seen Dr's donate their time regardless of ability to pay.
I have seen hospitals forgive debts.
I have seen neighbors family and friends come together to pray.
I have seen nurses, donate their expertise.
I have seen clinics donate vaccinations.
I have seen acts of great beauty in terrible situations.
I saw a world come together to support Erin and Joel DeSouza. When they mourned we mourned. Maura was priceless.
I saw people come together to support Elsa raise funds for the cancer program at Dana Farber.
That, my friends, is health CARE.
Congress should write a plan that they themselves would use. Perhaps when considering the value of their own lives, we'll get somewhere.

Thursday, September 10, 2009

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

Tuesday, September 08, 2009

This week in Pictures

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

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

Wednesday, September 02, 2009

A "my mundane life update"

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

Tuesday, September 01, 2009

Another good idea for Childhood Cancer Awareness Month


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

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

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

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

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

Saturday, August 29, 2009

September is Childhood Cancer Awareness month

I am dedicating this to all the little cancer warriors. Childhood cancer is another great cause that needs attention. Children diagnosed with Sarcoma account for almost 20% of all childhood cancer cases. No new therapies have been developed for childhood Sarcoma in decades. No new therapies for any form of childhood cancer has been developed in decades.

I received this from a mom of a child battling Ewing's Sarcoma.

The Swine Flu: A Crisis

It's all over the news. The Swine Flu has entered the U.S., and everyone is responding quickly. Here is what has happened already:

--Over 100 schools have closed.

--President Obama called on all schools with possible swine flu cases to "strongly consider temporarily closing."

--Congress approved $1.5 billion in emergency funds.

--Education Secretary Arne Duncan said that everyone involved in schools needs to "pitch in and do our part to prevent the spread of this flu virus."

--The Department of Education and the CDC have held conferences to give updates and advice for handling the crisis.

--WHO Director-General Margaret Chan has raised the alert level to phase 4.

--Shipments of the drug Tamiflu from the federal stockpile, enough to treat 11 million patients, have been distributed to several states.

--Dr. Jesse Goodman, of the Food and Drug Administration's swine flu work said,"We're working together at 100 miles an hour."

--Congress has asked Homeland to consider closing the Mexican border.

Here are the numbers: There have been 226 documented cases in the U.S. There has been one death, a two year old boy with underlying health issues.

Updates on the Swine Flu epidemic are all over the papers, T.V., Internet, and radio. You can't avoid it.

This is a crisis and deserves a fast response. Sick children, and the death of even one child, is a great loss. But I am a little confussed. I would like to point out some comparisons.

1) Since the outbreak in the U.S., there have been 226(via cnn 0540, today) cases of swine flu, and one death. Compare that to the fact that 12,600 families are told their child has cancer each year. That is 35 families every single day of the year.

2) The media tells us that the 226 cases and one death from the swine flu is a "crisis" and "epidemic". But do a google search on childhood cancer, and you will find the media consistently saying childhood cancer, with 40,000 current cases and 2,500 annual deaths, as "very rare".

3) To protect yourself against the swine flu, you should wash hands, not touch your nose, and cover your mouth. You can even wear gloves and a mask. But there is no protection against childhood cancers. In fact, the cause of most childhood cancers is still unknown.

4) The swine flu produces severe flu symptoms. The effects of cancer are beyond description. So just consider this: Cancer is part of the body, so the treatment is a process of poisoning the child to the brink of death, then pulling back hoping they stabilize, then hitting them again. Over and over and over. Maybe a year, maybe 7 years. The resulting organ failures often cause more complications and deaths than the cancer itself. And then you wait and pray that it all worked. "Remission" only means they think they got it all. "Relapse" means they were wrong.

5) The government has opened up it's stockpile of flu drugs to fight the crisis. But there is no stockpile of cancer drugs. In fact, it has been 30 years since a new pediatric cancer drug has been developed. A 5 year study by the National Institute of Health concluded that new drugs for pediatric and adolescent cancers are not being developed because the profit margins are too slim. Therefore mega-doses of adult chemotherapy are administered to children, using a medical assembly line system called protocols. The great need for individualized care is ignored because it is not economically sustainable.

6) Congress has approved $1.5 billion in ADDITIONAL funding to fight the swine flu. With 226 infected people, that is $6 million per person. Childhood cancer received a TOTAL of $30 million. That works out to $750 for each child currently fighting cancer.

So does any of this scare you more than the swine flu? It should. The emergency response to the swine flu has been great. But where is the emergency plan for childhood cancer? And where is the media attention? There is none

TO support the efforts for a cure,

Wednesday, August 26, 2009

This has been a difficult year. After the cancer recurred in my lungs in November, things were looking a little bleak for me. I was geared to fight, absolutely, but though I avoid perusing statistics and facts and figures, I know the prognosis for stage 4 Sarcoma and it was difficult not to simply write myself off. I experienced little bits of depression and some feelings of unbridled hopelessness nevertheless, I carried on, worked hard, enjoyed my Thanksgiving and Christmas as much as possible. Well, SHAME ON ME! Many years ago, I remember reading an obituary in the local paper for a women who was diagnosed with leukemia. She was terminal yet the obituary stated that remained in school working towards her degree and accepted a proposal from her long time beau. Why, I thought, would she bother? It was over for her. Curtains! Why start anything? 20 years later, I know why. Because as long as I have a breath in my body, I am alive. I am living. There is never ever a time when we can simply stop living. A life with disease is still a life. I have no clue when the elusive cure for cancer will be found. It can be today. It can be next year. We had no idea how my cancer was going to react to the trial drug but it, in addition to my lifestyle changes, may have resulted in a stay for me. Statistics are liars. Sure they can show trends but a statistic is just a number that cannot measure my spirit, my will, my choices, or the strength of my determination. Never should anyone stop living in the face of any adversity. So here I am almost one year later in a better position than where I started and I am making plans for the FUTURE. The word is still a little daunting for me. When I try to form the words "Next year" sometimes my head spins as I remind myself I can only deal with today. Next year is an enigma. But, life seems to be urging me in a direction I never thought I'd ever go. The idea of letting go of the bits of my old life that sustained me, is scary but I'm not dead yet and I may live to 80, I just don't know so, onward. I am ready to let go.

Post Script:
I would like to thank a few earthly angels who helped me with a few needs. School started today for the high schoolers. Emily begins Kindergarten on Monday. I was looking at over $1000 in fees and had no idea where it was going to come from. When I thought of those fees and the fact that I still needed to buy their supplies, new clothes, and shoes, I was in a bit of a panic. I owed the village $500 for parking tickets and fines for leaving the garbage cans on the curb longer than 24 hours. (The kids owe the garbage can fees. I left them out there to teach them a lesson as I knew we would be fined.) I owed the church $400 for Confirmation classes. $800 of the school fees were waived thanks to an industrious worker at the high school. My father in law handled the new clothes and shoes for Kris and Cass. Grandma handled Emily's school supplies and a few new pairs of jeans. A kind woman from the Village knocked down the $500 to $250 and an unexpected find paid for the COnfirmation classes. I've been asked how I will handle the financial problems associatd with tuition costs etc. if I am accepted into the nursing program. It will work out. I am almost, 99.9% sure that it will. Just a feeling.

Monday, August 24, 2009

With the band camp successfully completed, life has returned somewhat to normal and I don't have quite so much running around on the agenda for this week. Cass and Kris start school on Wednesday and the only thing missing is school supplies. The high school really does not give a supply list so I buy the standard pencils, pens, notebooks etc.
Emily's IEP meeting went fairly well. For those that don't know, IEP stands for "Individual Education Plan". My daughters diagnosis is ADHD with Oppositional Defiant Tendencies. If you look these disorders up on the Internet, it makes is sound as if I'm living with a little monster but that is not so. She is spirited and defiant at times and that is absolutely true but she is also bright, creative, funny, engaging, and gentle. Unfortunately, her own biology works against her and her team at the school had some good ideas for managing her behavior. I was leaning towards putting her in special ed right away but her Psychologist felt I should give Emily every chance to succeed in a mainstream classroom. If that doesn't work out, we can move her. She will be screened tomorrow, the screening being a test to see how much she already knows in the way of shapes, colors, numbers and letters.
Kris successfully passed his written test and now has an official state drivers permit. I have not yet given in to letting him drive as I would prefer he risks his instructors life for a few weeks before I let him be the nut behind my cars wheel. His grandpa let him drive on Saturday night and well...I believe if grandpa were a cat, he would be missing one life.
I am contemplating a huge career change and have been in touch with a local college to inquire about their Nursing curriculum. There are a few things I will need to complete before the application can be submitted.
1) Two Anatomy and Physiology classes
2) A CNA license.
3) A Nursing entrance exam.
I am looking into taking the Anatomy classes online but need some direction as to what online schools accredited programs will count as the successful completion of this pre-req. I plan on trying to get into the CNA class in the Spring. I have already filled out the college application and after the college finishes handling the craziness of the first two weeks of school, they will call me back with an appointment time to speak with a school financial couselor and admissions specialist. How will I pay for this? I don't know. I qualify for Stafford loans but paying for the classes is not the only financial consideration. The mortgage will need to be handled for the duration of this two year program and of course, there is medical insurance. I can buy into the college's group plan if I need to. All this will be discussed during my meeting. This could the smartest thing I've done or the dumbest. Time will tell.

Thursday, August 20, 2009

T minus 4 days....

until the teens start school.
This week has been a blur so jammed packed with things to do that I can hardly catch my breath. Both Kris and Cass have been up to their armpits in Band Camp..yes, I saw American Pie and know all about that one time but...
Cassie has been griping all Summer about this and even longer actually. One of our mom vs hormonal teenager arguments had to do with her not wanting anything to do with Band after 8th grade. When she was choosing her electives, I was pretty strict on what she could choose. As she is in the college prep program, I negated fashion design, sewing, and life skills whatever that is exactly and pushed for a foreign language, history and Band. Because of her good grades in Junior High, she was rewarded with an extra elective. I conceded that she could use the extra to take Foods but the other two electives needed to have college material type substance. She chose German as elective number two but it was elective number three that caused two weeks of fighting. She wanted Fashion Design and I wanted Band. She whined. She cried. She pleaded. She begged. But, she marked Band down on the course selection sheet and fumed about it for months. She didn't want to march. This 5 day camp teaches them the music and the formations. On Monday, she reluctantly grabbed her clarinet and stomped out the door. When I picked the kids up 5 hours later, she was chattering about her mis steps and faux pas. By Tuesday night, she said...get this.. SHE HAD FUN! SHE MIGHT JOIN BAND NEXT YEAR! GO FIGURE! She's made new friends, seen old ones and got a tan. Win Win!
THe first day of High School is next Wednesday. Emily starts her Kindergarten adventure on the 31st. Big changes on the horizon...

Wednesday, August 19, 2009

Oceans of Hope Sarcoma Fundraiser

We need your help for the OCEAN OF HOPE CAMPAIGN 2009.
Our goal is to raise awareness and funds for The Sarcoma Alliance so that we can continue our work of guidance, education, and support to sarcoma patients and their caregivers. To make am donation online please go to:

The Ocean of Hope campaign is the largest fund raising event of the year for The Sarcoma Alliance. Ocean of Hope (O2H) is a paddle board race held each year in August in conjunction with the Catalina Classic in Southern California. The 32-mile course begins at Catalina Island and finishes at the Manhattan Beach shoreline.

The O2H Campaign is a special group of paddlers who have annually volunteered to dedicate their race to the benefit of the Sarcoma Alliance and thousands of sarcoma patients and their families. Every yard, every mile, and every arm stroke, will be made in the hope that their passion and grit propels people to give to the Sarcoma Alliance this year.

Campaign by visiting our site: