Tuesday, June 30, 2009

A minor success!! The Abilify seems to be helping Emily and she hasn't had a major meltdown in a few days. She was so awesome at the party on Saturday, that I showered her with praise all the way home! WE still have some work to do but with some of the fog cleared out of her head, we can work on the behaviors a little more easily.

My stomach is a little jumpy today. Tomorrow, I go through the gambit of tests at U of C, EKG, Blood work and then the dreaded scan results. I'm praying that I remain on the placebo for the next 6 weeks. I'll take the placebo forever if it means nothing grows and I've been been extra mindful of good nutrition the past 6 weeks and really making sure I consume heavy on Omega 3 fatty acids foods, eat my veggies, eat my fruits and juice every day. While grocery shopping the other day, I noticed in the Yogurt section, a drink that was called G.T's synergy, Kombucha, organic and raw tea. As almost nothing in the local grocery store is organic and raw, I put it in my cart and figured I'd give it a try. It contains no sugar, no fat, and billions of live GOOD bacteria. Sooo, I took it home and opened up the bottle and took a swig and crinkled my nose in a big way because it was sooooo sour. But since it seemed to be so good for me, I finished it all and was surprised to find that after I drank it, I felt so light headed and in a way, peaceful. I drank the second bottle and immediately felt that great light headed, airy, floaty feeling and now, I'm hooked, so hooked, I went out to get more. I went to the local Fruitful Yield and found the Kombucha in 20 different flavors!!! I bought some strawberry, mango, ginger, raspberry, citrus, blackberry and so far have crinkled my nose at every single flavor but I just love that airy feeling that is very different from the feeling I get drinking my daily glass of red wine. I know it sounds stupid but I'm getting great probiotics, ECGC which is an ingredient known for its cancer killing abilities, and a nice head rush. In my view, it's a winner.
I really enjoy looking for new good for me things to eat. On Friday, I went to a small, local farmers market that really had very little in the way of fresh produce but I picked up some homemade Hummus that was just to die for. It, on top of the fresh baked bread I bought, was fantastic! I can't wait to head to the market again on Friday and pick up some more. Who says that good nutrition tastes awful? It's a very strange thing...me, who used to consider eating healthy, putting tomatoes on my cheeseburgers, is now focused on nutrition, researches good foods, and has a pantry full of foods no one has ever heard of. THe fact is, focusing on nutrition is empowering. I feel as if I'm acting on my own behalf. I'm doing something for me that my Oncologist cannot do and who says it isn't making an impact? How can it not? I recently read an article on Science Daily that noted the increase in recent years in cases of Ewings Sarcoma. Cancer, in general, is on the rise but Ewings, being so rare, actually has Scientists taking notice. In the same block of studies, I read a study that the food we eat is becoming less and less nourishing as the nutrients have been processed right out of it. We are eating dead food that may quell hunger but does little to actually feed the cells. Why would that not have an effect on the rise in cancer? When I am asked about my own journey and mention use of nutrition, often I am looked at with the same expression as one looking at my pantry..WHAT IS THAT?? And they tell me I'm spreading some mumbo jumbo, hocus pocus, that makes no earthly sense. Obviously, I missed the memo that Chemo is the only thing that acts on cancer cells. I don't buy it. I will keep drinking my Kombucha, sprouting my Quinoa, and juicing that Kale.

Saturday, June 27, 2009

UGH! A lousy morning with Em. It started with a 3am temper tantrum and continues with hitting, spitting, shouting, yelling, poking, prodding, terrorizing and continually driving me nuts. WE are supposed to go to a grad party today with her. I am so concerned about her behavior, I'm considering finding a sitter so no one else has to deal with her sucky behavior. The Dr. wants to try her on Abilify to calm her down so she'll be more apt to listen. I was on the fence about it. Not anymore. As she did not let me sleep much last night, I'm exhausted this morning. It's going to be a long day.

Thursday, June 25, 2009

Yesterday, I took Emily to the Psychiatrist to check on her medication. For those not familiar with my spirited little daughter, she was diagnosed last year with ADHD and possibly ODD (Oppositional Defiant Disorder). Life with Emily is not easy. She is moody. She is stubborn. She is prone to hysterical fits of rage that last for hours if she is given the chance. Her needs for constant attention, cause her to purposefully annoy others by poking them or jumping on them or doing things to intentionally incite a negative backlash. My words cannot adequately express what we have gone through, the frustrations, the tears, the anger. Despite the fact that I know Emily cannot help it, sometimes I lose my cool with her. As there is no male figure here other than my 16 year old son, it is just me who has intercede, quell tempers, and restore peace and light to our home. Realizing we all needed help, I started bringing Emily to a behavioral therapist last November. It took barely any time at all for the BT to see the less joyful side of my daughter and she was quickly referred to a psychiatrist for an eval. Em was placed on Strattera which did some good but as time has gone on, it was noticeable to me and many others that there was definite room for improvement. So, the Dr. prescribed Prozac. No effect. After a particularly bad Monday that resulted in my 14 year daughter calling me in tears after watching Em for 10 minutes while I went grocery shopping, I was hoping for some answers yesterday. The drugs aren't working! THe prozac did nothing! Her behavior is still out of control! We need help! Her psych asked me to describe her behaviors and I did. He said, medicine won't fix that. That, YOU have fix. I paused.. Me... I forgot that I have a part in the healing process, in her healing process. THe Dr. is a human being who can only base his advice on what has been proven and tested and this is not a bad thing. But, we as patients can rely on what WE know. WE can fall back on our own experience. We can look at the anecdotal evidence. We can take into account the experiences of others. We can look at the improbable. We can take part in our OWN healing. In the cancer world, my Dr. is only concerned with the tumor and that is in fact what he is treating. It is up to me to treat my spirit, my soul, and the cells that are NOT cancerous. This is where MY power lies. I cannot wait for the Dr. to prescribe for me the magic pill because it just plain does not exist. There are some things that I have to fix. There are some things that I have to change and there are some things that I have to do.

The cure of the part should not be attempted without treatment of the whole. No attempt should be made to cure the body without the soul. Let no one persuade you to cure the head until he has first given you his soul to be cured, for this is the great error of our day, that physicians first separate the soul from the body." PLATO

I can change my attitude and how I deal with my problems.
I can change what I eat and make sure that everything I put in my mouth is healthy and is nourishing. A bag of chips satisfies hunger. It does not nourish.
I can change my focus.
I can change how I spend my time, more work? or more family time?
I can simplify my life and reduce as many stressors as possible.
I can change my sleep schedule and make sure I get enough.
I can see the good side and not the bad.
I can do many things....what I can't do, is give my Dr. all the power to heal me.

Emily's meds help to a point. The rest of her healing.... she and I have to do.

Wednesday, June 24, 2009

It's hot!
Chicago is known for its volatile weather patterns. Two weeks ago, I heard lots grumbling that it was cold and wet. Then a warm front came through and it is now 94% with at least 85% humidity. This has tossed a crimp in my walking schedule. I have never been much of an excerciser and it's not that I don't like it. I just can't stand the feeling of being sweaty. I have tried to refocus. Sweating is detoxifying. The whole purpose of a sauna, and we have a natural one outside now, is to sweat away toxins and rejuvenate. My re-focus didn't quite work as I had hoped but I did go out and subject myself to the torture and because I was feeling I needed a little additional punishment, I brought Emily along. My thinking was, Emily is hyperactive. What better way to burn off all that energy that take her on a nice walk. Well that blew up in my face. Emily walked a block and then she was complaining she was tired. She plopped down in the middle of the sidewalk and refused to budge. I walked on. She caught up eventually. In true ADHD fashion, her brain was all over the map. See mom, I"m walking..oh hey, is that a dandylion? RUN RUN TO CATCH UP TO MOM.. OH LOOK! CLOVER!! I'm HOT! I'm thirsty! I wanna go home! I don't wanna go home! YOu're walking too fast! You're walking too slow!! .......Sigh... I will leave Emily home unless it's a walk to the park. Today, as it's close to a 100 degrees with the heat index, I'm postponing my walk until sundown. I blew it off all together yesterday and feel a leeeeetle guilty. But uck! IT was just plain sauna-ish out there and I did not have the luxury of time for a shower after I sweat profusely.

CT scan tomorrow.. BLECH!!! Will it be good news? Can I go three months and remain stable while on the placebo? I sure hope so. I don't feel any worse than I did 6 weeks ago. I even feel a little better with more energy when I'm not tired from all the late nights working I've put in lately. But, I'm still nervous. I hate scanxiety. Results on Wednesday. In the meantime, I'll enjoy a nice weekend and enjoy my days in The Matrix.

Monday, June 22, 2009

On Saturday, I was only scheduled for a 4 hour shift at my second job for a large retailer. This is an oddity and I was so excited at all the possibilities. What can be done with that extra 5 hours? Do I go shopping? Do I mow the lawn? Do I clean the carpet, sit on my butt and watch Lifetime movies? What? I opted to clean Cassie's graduation party and Emily's birthday party out of my carpet, go to 5pm Mass and take the older kids to see "UP" as Emily was off with her dad this weekend for Father's Day.
After I scrubbed out the spilled wine, the green frosting, bits of grass, crumbs, mustard, ketchup and the Spring round of cat yak from the LR carpet, I rounded the kids up for Mass. Of course, my kids were whining. I am a 16 year alum of Catholic schools. Religion was as much a part of my young life as air. Sadly, I fell away from the church and never properly taught my children. Life got in my way and I was half asleep, sleepwalking actually for a few years. The universe woke me up with a nice hard slap on 2006, when I got "the call." What I did not know when I entered the church Saturday, was that this was a special mass. The associate pastor was leaving to be pastor of his own parish and the Knights of Columbus, all the deacons and church personnel were sending him off in style. His last speech to the congregation was based on a gospel. Jesus was in a boat with some of the apostles. A storm came on suddenly and tossed the boat around, waves breaking over the side, and peril all around. The apostles found Jesus asleep down below and asked him how he could sleep when their boat was in such danger. Jesus woke up, asked them why they did not have faith and commanded the sea to be still and the winds to quiet. The lesson: during the roughest times, when it seems as if you have been abandoned, when you're screaming at GOd and wondering why he does not seem to give a crap that you're hurting, that you're suffering and that He seems to be asleep, remember that's He's in the boat with you the entire time. Hmmmm.... I am one of those people that looks for signs and believe that nothing is arbitrary. I believe every person that enters my life in some way, shape or form, has been sent for a reason. Perhaps they are friends, or support circle, or teachers but all are meant to be in my circle, even the antagonists. I've also been feeling sometimes, that I am walking a tight rope without a safety net. When the priest finished his speech, I wiped away a tear or two. I felt that this I was meant to hear this, to be there, to be part of the good bye party, and the festivities in the church basement that night. I also left feeling that this choosing this church and church community, was the right decision and the right Parish for me. In the Fall, the kids start the Confirmation process. I have been kicking around joining the church choir, something I loved doing as a youngster. My voice has been virtually unused, other than belting out with some CD's in my car at times and I always felt this little tug steering me in that direction. I need to change my work schedule at the second job just a little to accomodate the 11am Mass but that should not be too hard. In the meantime, I'll practice by belting with more CD's. We have a 4 hour trip to Wisconsin planned in a couple weeks. What better way to pass the time, than annoy my children with my rendition of "Don't Cry for Me Argentina?" They'll love it! NOT!!!

Friday, June 19, 2009

I go a walkin....

Yesterday, my five year old daughter, said "Mommy, you're getting a little bit fat." Thanks a lot! "Just a little bit", she said as she held her thumb and forefinger together. To be honest, this is nothing I didn't already know. I'm not up a size after the long Winter but some of my clothes are just a weeeee bit too tight. The other day, I had to lay down on the floor of the bathroom to button a pair of jeans. Though I eat mostly greens and fruits, they still have some calories and me being an out of shape office worker, I excercise my index mouse clicking finger and not much else. As a matter of fact, I've excercised my mouse clickin index finger so much, it became swollen and sore. So last week at the Dr. office, I asked my Oncologist if a little mild excercise is OK. Of course it is! Running is out of the question. The tumor was located in my upper thigh/lower pelvis. When the Dr. removed the baseball size sucker, it left a huge huge hole. TO prevent my organs from falling into my leg, the Dr. installed some mesh which is screwed in to my hip bone. I also lost one of my quads, numerous lymph nodes, and a nerve. My right thigh is numb and I also have lymphedema so I have to apply compression to manage swelling. WIthout my quad, my right leg is not as flexible or strong as the left. Running or jogging is no easy feat. So, I have decided to start walking. Seems easy enough, a nice brisk mile walk. The first time out was not too bad and consisted of a simple mile walk to the park. Then, I stepped it up a bit. I walked through the neighborhood, enjoyed the sunshine, looked at flowers, landscaping, watched kids play, counted houses that were on sale or abandoned, looked at airplanes overhead and people watched. I arrived home sweaty but felt OK....until I sat down, did some more work, and stood up again only to experience achey muscles, especially in my calves and challenged leg. In the evening, Emily wanted to go to the park again. So I figured, what the hey and walked another mile, 2 miles round trip. My challenged leg was screaming at me by the time I got home. I had a one day reprieve due to rain but went for a nice brisk walk in between grocery ailes and worked my retail job so I did not feel too guilty. My next time out was more of a challenge because my muscles were achey, tight and sore and yelled at me. Just to spite them, I took a different route and did about 2 miles maybe three. Arrived home sweaty and hot. This time, my stomach was knotty and I could feel lots of heat radiating from my skin. I took a nice long shower and sat down long enough for my muscles to tighten and complain at any movement. Holy Moses! I did not realize how out of shape I am! I feel like a total wimp! They are lucky it's pouring rain today or I would go do 4 miles. THat'll learn em.
My hopes are that by the end of the Summer, I won't have to lie on the floor anymore to get those jeans buttoned and that I'll have more flexibility and strength in the challenged leg. Despite the pain, I feel I did something good for myself and am now trying to come up with different routes so I can see different things and maybe add a few more hills and dips to affect each whiney ol muscle so there is less whining and more strenghtening. My mere three days out has resulted in subtle changes, less bloating around the middle, more trips to the bathroom, a little more energy and slightly less Lymphedema swelling. I'll keep it up. My brother has a 5 mile walking route that he does at our summer home. This will be good training to accompany him. I absolutely cannot wait!!

Wednesday, June 17, 2009

Prayers for Elsa today as she undergoes her 9th sugery for recurrent Liposarcoma.

The weekend was quite eventful
For the first time in maybe 5 years, I headed downtown to enjoy the Chicago Blues Festival on Friday. The Sun was shining, an oddity. It has rained 11 out of the past 18 days and has been unseasonably cold with temps in the 50's. Last year at this time, I was dealing with 92 degree weather and a broken Air Conditioner that led to a nice bill for a new A/C which I am happy to report is not needed thus far this year. My brother and I decided to avoid the Friday Rush Hour traffic and head down on the El. It's been awhile since I've written the famous Chicago Elevated Railway or EL as we fondly call it here in the Windy or not so fondly if you're a regular rider who has seen it all on the train. It was a part of my daily life when I lived in the old Bucktown neighborhood for a year. I caught the El at California and Milwaukee in a neighborhood that would scare most people and rode it downtown to Jackson street close to my job at the old Berghoff Restaurant. (I am in one of the historic photos on their website) In the morning, it was full of commuters. At night, it was full of homeless and a few drunks who I was one of a few times. As it had been awhile, I looked and acted like a tourist, unaware of the new El process. I used to buy a token from an actual person who barely looked at me and sounded like a robot when they asked me if I wanted a transfer. Now, I had to use a machine that gave no change, for a little pre-pay card that needed to be put in a slot. I, of course, looked like a fool because I couldn't get the card in the slot in a way that it would register. In the old days, a conductor, who sounded a little bit like Charlie Brown's teacher, announced the next station. Now, a computer voice let me know every 5 seconds that I was on the Blue line from O'Hare, the doors open on the left, the door will open, the door will close, the next station is .... and exit stage left because the train is on fire.
Traditionally, we have had very good times at the Fest. This year did not disappoint either. It managed to go off in between raindrops. The weather was comfortable. The skyline was striking. The music was great and the highlight was meeting up with an old friend that I haven't seen since I was 15. She found me on Facebook. I spend about 5 minutes on Facebook daily but it has brought me back in touch with people I have not seen in ages and has brought new friends into my life. For that, it was worth the free admission charge.

I took some pictures at the Fest but can't post them yet. I bought myself a nice little digital camera last year as a Christmas gift to myself at the same time I bought my daughter a digital camera as a Christmas present to her. Hers was a Kodak like mine but it was a different model. I bought a USB cable to upload pictures and a charger figuring that it would work for both. I recently took my camera out of the box. Yes, I'm aware it's been over a year but I am just as good a photographer as I am a gardener. Much to my dismay, the USB cable and the charger do not fit my camera. DOH!! And BOOOO to Kodak for this ridiculous development. And BOOO to me for not being savvy enough to notice. Nickels and dimes....

Friday, June 12, 2009

Prayers for Michelle today as she goes through another surgery. I am praying for success and a drug for her that will do in the rest of those pesky tumors. I'm raising a glass of green juice in toast that it really is her turn to kick Sarcoma butt!

I'm also asking for prayers for 14 year old Derrick, a 14 year old MPNST patient who was placed in Hospice care two days ago. My arms are around him and his family in spirit and in prayer. I hate this cancer. I hate that it is one of the more common forms affecting children. I hate that no one in the drug development world cares about it and neither do big charity organizations like the American Cancer Society. Don't get me wrong. The ACS is a great organization in the area of patient support and they do donate millions to cancer research but almost none of their dollars go towards Sarcoma research or into any of the rare cancers. I worked two Relay's and enjoyed the experience. I had the opportunity to share the challenges that are presented to those of us who fight rare diseases when I was asked to give the Survivor talk last year. But, after some thought, I decided that my energy would be best served promoting education and research for Sarcomas. THe rarity of the disease warrants every loud voice in protestation, in education, in soliciting research dollars, that we can get and I can be very very loud.

In honor of my inspirations, Maura DeSouza, Amber, Derrick, donations will be made to a Sarcoma charity such as Jennifer Hunter Yates Sarcoma Foundation, The Sarcoma Foundation of America, The Sarcoma Alliance, or the Liddy Shriver Sarcoma Initiative. The best way I could think of to honor their lives and mourn their loss, is to work for a cure. For the rest of my Sarcoma friends still fighting, for the caregivers, family and friends who have supported us in our journey, I am making way for a rose bush somewhere, probably in the front yard. I believe that the roses will be yellow, the color of our awareness ribbon, the color of friendship and comaradery. Peace all.

Thursday, June 11, 2009

Hurry up and wait!

The three week check up came and went.. It was typical. I worked until Midnight on Tuesday to get some work out of the way then woke up early to work some more before I had to leave for my standing appt. I waited in bad traffic due to pothole filling. Once I got to the U of C, I waited for the hospital vampires to take the blood. I waited in the waiting room to have vitals taken. I waited in the Dr.'s office and then waited in bad traffic on the way home on Lake Shore Drive AND the Eisenhower expressway. Due to Blues Fest, a thoroughfare was completely shut down but whatever. It was a nice day and I enjoyed looking at the Lake. Rule one for any cancer patient, be prepared to wait. Never go anywhere without an engaging book to read, crossword, a craft or something to engage the mind for the average wait time is around an hour. Sometimes, I size up other patients waiting with me. Some are knitting. Some are sleeping. Some are pacing back and forth. Some are talking on their cellphones. Oncology is a busy place and chairs are set up in the hallway to handle the spill over of people waiting. We cancer patients can think of 2000 things we would rather be doing. Time is precious.

That said, my bloodwork was fine. BP was fine. Heart rate was fine. I was released to my own devices. It's time to schedule the next scan. I hate hate hate scans but, after this scan, I go to a every 3 month scan schedule instead of every 6 weeks. Whatever will I do without the monthly dose of Barium? It just gets nastier every time and I find I drink less of it. It gives me a tummy ache and I spend the day running to the bathroom. Sometimes, the tech surprises me by making me drink another cup before hand. NO FAIR! WHen that happens, I feel sacked. But, I'm a good sport and drink it after shooting the tech a look when they are not looking. Immaturity can be fun.

This weekend is chock full of activity: Blues Fest, work, grad party, maybe some sleep. I haven't yet decided. There is not time however, for waiting.

Tuesday, June 09, 2009

What a weekend...

The party went off despite all the last minute running around. The weather was not exactly cooperative and my nice backyard unfortunately was wasted but the burgers did not get soggy from the rain and I didn't have that many left overs to find room for in my overextended fridge. There was some drama as can be expected when teenagers collide but there were some laughs and some good times. Thank you to all who travelled the miles to be here. Your presence was much appreciated and despite the weather, the party was a success. One of my friends pointed out that she did not remember getting an elaborate ceremony or graduation for 8th grade but here in the Land of Lincoln, we acknowledge this Rite of Passage. For some of the kids, it's the only graduation they will have. To my daughter, it was a huge deal because the social life is EVERYTHING. When my son graduated, he was vaguely aware of it but it's different for girls, especially when the girls BFF graduated high school this year and her excitement over Pomp and Circumstance affected my daughter.

Now it's back to reality and I will celebrate reality with a nice trip to the U of C tomorrow for the 3 week check up. Oh yay.

Grades will be coming this week for the kids. My son is a little nervous but the year is over and hopefully, he will really put the pedal to the metal next year. He did manage to acheive placement in the UBER band next year and is interested in trying his hand at Jazz. The graduate received a 4.0 for the quarter and a 3.9 GPA for her two years. SHe received two academic awards and is nervous but excited about her high school career. I am just worrying about the Summer. I cannot wait to attend the CHicago Blues Festival this Friday where I will meet a friend I have not seen since grade school. We met up again on Facebook. I have three invites to grad parties. I will be attending the Independence Day Tea Party on July 4 after which I will be trekking up to Wisconsin to spend a WHOLE TEN DAYS AWAY from Ma Bell and Big Box Mart. I will attend one glass show to satisfy my glass lust. My china cabinet is just getting way too full. TIme for a new one of those. Whereever shall I put it? I am getting my bathroom done and will start the proceedings for a bedroom remodel.
I have no time for Sarcoma so it just better behave.
Here's to a good Summer!

Thursday, June 04, 2009

Cassie's Graduation Day

Tonight she walks. Last night, she introduced me to this song, her official graduation song, "You're Gonna Miss This" sung by Trace Adkins.

She was staring out that window, of that SUV
Complaining, saying I can't wait to turn 18
She said I'll make my own money, and I'll make my own rules
Mamma put the car in park out there in front of the school
Then she kissed her head and said I was just like you

You're gonna miss this
You're gonna want this back
You're gonna wish these days hadn't gone by so fast
These Are Some Good Times
So take a good look around
You may not know it now
But you're gonna miss this

Tuesday, June 02, 2009

Ahh teenagers!

Yet another page from "My mundane life" follows...

It is coming down to the end of the school year. Cassie's big graduation is in two days with her party this coming weekend. Kris has exactly 3 days to pull his grades out of the trashcan or he faces grounding for life. As my son is last minute Charlie on most things, it did not surprise me that my son opted to wait until the last minute to complete two school projects. One, an extra credit for Physical Science, required him to make a house out of spaghetti which was due last Tuesday after the holiday weekend. As I had Monday off, I spent the majority of the day running around getting food and balloons orders for Cassie's graduation party. My son spent the majority of the weekend ditzing with his friends and at 7pm on Monday night after I had already been to three stores, informed me that he needed spaghetti and a glue gun. Off to the Big Box Mart I went. After having spent all weekend there and a significant part of MOnday buying supplies, I was more than a little annoyed that he didn't bother to mention that he needed these things earlier. He began the project at 9pm. It took him half an hour to burn his fingers with hot glue which resulted in 30 minutes of walking around holding his burned finger and cursing under his breath. He stayed up until 3am, forgot to set his alarm, missed his bus and then tried to tell me he was *cough *cough sick and needed to stay home. That didn't fly with me and I deposited him and his spaghetti house at school. Fast forward to Friday. It's one week to party time and I was trying to get the house in some sort of order. I spent Friday spot cleaning my carpet which was pretty much one big spot and it took me hours. Kris wanted to go see his friends band play and promised that if I let him do that, he would finish his chores over the weekend. I really am stupid. I took him up on his offer. Saturday night, after work, I took the family out to dinner to celebrate Kris's birthday. We had a really nice time and didn't leave the restaurant until after 10. On the way home, my son informed me that his band was playing at the graduation ceremony the following MORNING AND he had a project due Monday which required two rolls of Duct Tape. WHAT???? I yelled at him while he insisted he told me about all this. He insisted he DEFINITELY told me about the graduation but admitted he may not have mentioned the exact date. GRRRRR! I had to work at BBM at 9am on Sunday and somehow had to get him to the high school to meet the bus. And of course all those chores that he promised to get done, did not. Sunday morning, as I was getting ready for work, I heard Kris's alarm go off at 7;30. He shuffled upstairs to take a shower and asked if I thought the neighbor was up because he needed to borrow a tie. I was at BBM on Saturday and reminded him, I could have gotten that tie then or at any of the other 10 times I worked my retail job in the past few weeks. So, finally after some scrambling around, we left to drop him at the high school so he could catch the bus to the graduation. We entered the parking lot and there was nary a car or any signs of life for that matter. I waited in the van while Kris went in to see if anyone was in the band room and sure enough, it was locked tight and not a single soul was in the high school at all. I dropped him at home after a few stern words. THe nickel and dime-o-meter was at a high and getting higher. As I spent all day yesterday working, I failed at motivating my kids to do a darn thing around the house. I still have a few errands to run. It's going to be a long week.

Monday, June 01, 2009

Last Thursday, another one of my inspirations, died.
She was 14.

When I was first diagnosed with Sarcoma in 2006, my first inclination, as it is with so many others, is to hit the internet and research and read. What I found were clinical journals, papers, research articles, and personal opinions written by Dr's in medicalese that quantified the disease, measured it and spit out a Mathematical analysis that was far from encouraging and far from inspirational. I found 100,000 articles on how to die of Cancer but what I was looking for was a human story about how to live with cancer, how to fight it, how to stare in the face of the unspeakable and live each day. I found the story of a then 11 year old girl who was diagnosed with Stage 4 Ewing's Sarcoma and dared to go to school, learn crafts, celebrate good scans in DisneyLand, play computer games, fight with her little sister and maintain a space on the web that celebrated the opportunity to Live Each Day. I was just a voyeur but this little girl became a part of my every day life and I thought, if she can, I can! I regret that the only contact I made with the family was to write a condolence on the loss of someone so young, their child for Chrissake and despite the fact that I never met her, I felt a profound loss at her passing, cried real tears and felt as if a member of my family died. But underneath the sorrow was also a profound GUILT. She was 14 and should be going to her 8th grade dance and chattering about graduation. She should be kabitzing on Facebook and shopping for clothes, comparing make up tips, and looking forward to High School and her FUTURE. I am 41, have done more sinning, had opportunities to cause pain and grief on my family and friends and right now, I'm OK. With every death, especially of one so young, I have so much trouble resolving this in my own mind. I know I can never understand WHY and so I look for some meaning in my own life and try to determine what good I am doing with my journey. Do my words offer hope? Is there someone out there recently diagnosed with Sarcoma looking for someone LIVING with this disease? I don't know. But I do know this, my presence in this clinical trial, might result in one more treatment option for a person with a nerve sheath tumor. By saving myself, I stand to save many others diagnosed with this subtype that is notoriously chemo insensitive. My success with this drug could potentially indicated success for 1000's of others. My blogging could give hope to the hopeless and with every patient I talk to, I have the opportunity to support many many others. Perhaps the meaning in my journey, is for such a time as this.