Wednesday, May 27, 2009

The holiday weekend was busy, thoroughly busy. Due to the economy, no one really left this area and Big Box Store was hopping. I was plopped in the garden center on Sunday and it was an absolutely perfect day. The sun was shining and it was cool and crisp and perfect for planting. I am NOT a gardener. Perhaps if I had a free moment, I could do well at it but for now, the only thing I am accomplished at growing is nettles and dandelions. Petunias are the only flower that I can't kill easily, so inspired by all the beautiful plants my customers were buying, a bought a hanging basket for my deck and some petunias for the front yard. I had a wonderful conversation with a customer about blackberry bushes and strawberry plants and when I redo my landscaping, am definitely going to set aside a small corner for some blackberries and strawberries, two of my absolute FAVORITE foods! Monday, I had a day off from both jobs and I accomplished much in procuring supplies for Cassie's big bash on June 6th. Balloons were ordered. Soda, ice tea, chips, and crackers were bought. Cassie picked out a graduation cake and I put in an order for some party trays from the local supermarket. Due to the fact that I am grill-less, I went shopping for a new one and will pick up this coming weekend. I once had a wonderful Weber grill but a certain little boy, who shall be nameless decided that crashing his bike into the grill was more efficient than actually using the brakes. The gas grill that came with this house when I bought it, houses a few wasps every year but is basically completely defunct and we are barbecuing hamburgers for this grad party.

I am feeling well and am enjoying the time off from med side effects and all the wonderful summer fruits and vegetables that have made great salads and juices and of course, snacks to be eaten raw. There is a small farmers market on Fridays at one of the local grocery stores. I think this week, I will take some time and meander over there for some lunch break fun.

Finally, Happy Birthday to my son who is 16 today. 16!!! I don't believe I'm old enough to have a 16 year old but there it is on his birth certificate. Kristopher born 5/27/1993 12:57am. 19 3/4 inches long. 6lbs 15oz. He was my smallest baby as he was born 3 weeks early. My girls were 8+ pounders. He was born on a perfect day. It was sunny. It was clear and crisp and of course, his timing was terrible. I was in downtown Chicago, 40 miles from home, at a PreNatal appointment having my final ultrasound. I was told to keep a full bladder. At 8 months pregnant, that was not hard. After my appointment, on the way to the car, my water broke. Thinking it was a consequence of being 8 months pregnant with a bladder the size of a thimble, no immediate bells rang until the trickle became a gush and there I was 40 miles from home, alone, wondering if I should go back in the hospital and casually mention to the Dr. that my water broke, or navigate noon traffic and go home and get my husband. I opted for the latter, forgetting it was Blues Festival weekend and most of the routes out of the city of Chicago were closed to through traffic. I arrived home, woke up sleeping hubby, packed a suitcase, and we navigated the traffic once again to the hospital which was located in downtown Chicago and darn near impossible to get to. 12 hours later, my son was born. He was so small, so cute, so perfect in every way. Blonde hair. Blue eyes. My face. It was like looking into a 20 year old mirror. When my son was older, my father pulled out some old home movies to show Kris what his mother looked like way back when the dinosaurs roamed the Earth. My son didn't quite understand that these were photos of me. He commented he did not remember doing those things. Today, that baby is 16. We have gone through a divorce, years of poverty, Kindegarten, grade school and Junior High, first steps, first teeth, first words, baseball, band, two moves, cabin trips, scrapes, cuts and bruises, appendicitis, a fever that reached 105 degrees, frustrations, joys, tears, anger, happiness, disappointment, and now hope for his future. In two years, the State will deem my son an adult. In my eyes, he will always be my baby.

Friday, May 22, 2009

Cinderella and the Ball

The biggest event in my daughters life this year, the 8th grade dance, finally came and alas, went last night. From the moment she came home from school, it was a complete flurry of activity from a set "I need to get ready" itinerary she had put in place this week. First, a shower. Must have clean hair frothed with Aussie styling mousse. She was very specific when she sent me to the store. It MUST be Aussie. No other kind will do. Check! Aussie procured. After her shower, she walked around with a towel on her head to make sure the mousse was set and her hair had just the right amount of crinkle. This is very important. We must not go to a dance without well crinkled hair. Second, must chatter on Facebook about upcoming dance. Who will give who a ride at what time. Where is the meet up? Some protestations because some of her posse were unreachable via Facebook and cell phone and it was just T minus 3 hours to the dance and she did not have their itinerary. One of her friends decided at the last minute that she did not like her shoes and went out to buy new ones. The fact that my daughter couldn't reach her for an hour was a HUGE problem. Third, bug mother to pick up 5 year old from daycare early as mother MUST have the coach ready to go by 6pm. Fourth, make sure she has digital camera charged and ready to go. OH NO!! WHERE IS CAMERA??? That spewed 15 minutes of nastiness while she ran around trying to keep the towel on her head for that well crinkled hairdo, while tossing pillows and clothing around trying to find where she left it. "Try the bathroom", I said. 30 seconds later, she emerged with camera. Fifth, contact friend across the street and make sure she comes to do her makeup as promised. Friend calls back and says she is working and won't be home until 6pm. OH NO!! That won't do at all. The coach MUST leave port at 6pm. Well, I said, "Do your own makeup." Mother receives a nasty look for the suggestion. Sixth, bug mother that it is now 4:30, T minus 90 minutes to departure, and mother has not yet left to pick up annoying little sister. Mother sighs, finishes what she is doing and leaves to pick up 5 year old from daycare. When mother returned, she walked into a hornets nest because Cinderella's bangs did not crinkle like she wanted and she was upset her hair did not come out as envisioned. Furthermore, her friend was not back from buying shoes and it is now T minus 45 minutes to departure. Seventh, practice walking in high heeled shoes. Eigth, picture time! Snap at mother for wanting to take a few pictures before the dance because she is off schedule due to the hair, makeup and shoe problem. As she wanted her memory card clear for the dance, we also had to schedule time to upload the photos to the computer. 6:10, Cinderella enters the coach and the coachman drives the girls to the meet up point. They are the first to arrive. Coachman drops them off and tells them she will pick them up at 10 before the coach turns into a pumpkin.

Last, dance, smile, remember, cry. The 8th grade year is complete. Some friends will be going to different schools next year. A new phase of life begins in August.

Thursday, May 21, 2009

I forgot to mention what a beautiful day it was in Chicago yesterday. As I was driving to U of C, my daughter was on the Spirit of Chicago cruising Lake Michigan and enjoying the incredible view from out there. Cassie took the photo above and she is quite proud of it.

Her dance is today and she is raring to go. Pictures later.

Wednesday, May 20, 2009

Grace (Brivanib - Week 18)

Grace is the only word I can think of that summarizes today.

Today marks the 18th week of the Brivanib trial and another journey downtown to find out recent scan results and receive another two bottles of either Brivanib or Placebo. As I'm 99% sure I am not on the Brivanib due to the absence of light headedness, fatigue and thirst, I was not sure which way I wanted the results to go. 6 more weeks on placebo means nothing grew. A return to Brivanib means that things did grow. As I was markedly nervous, I was trying to self talk myself into seeing the positive side of both scenarios. If things grew and I was on placebo, I would return to a drug that I knew was working. But what if things were now really far gone? What if that pain in between my shoulder blades wasn't due to sitting in my office chair 12 hours a day and then hauling bottled water and 40lb bags of dog food on the weekends? What if it was really due to ....CANCER! After scaring myself for 40 miles, I felt like I was taking the Kobayashi Maru After a short jaunt to Infusion Therapy for bloodwork and vitals (BP and heart rate were elevated due to scanxiety) and a 90 minute wait in the Dr.'s office, my Dr. entered the room with my file and said "So, you're sure you're taking the placebo?" "Absolutely!" I said, "That is definitely not the Brivanib. I feel no side effects at all." "Well" he said "The reason I'm asking is because there is absolutely no change from the last scan. They are interchangeable. Nothing new. Nothing grew." I was stunned... stability for 6 weeks without the study drug!!! Now, I am aware that the file hasn't been opened and I don't know for 100% sure that I am not on the Brivanib but unless my body figured out in one day how to tolerate the Brivanib with absolutely NO side effects, I'm on the posers. I have been managing my disease with nothing but a nutritional protocol. My Dr. told me whatever it is I'm doing to keep doing it and that he'd see me in 3 weeks. WOW WOW WOW!! I said thank you to GOD over and over and over. Grace. Pure Grace today and all that juicing and drinking green stuff, all those salads, fresh fruits and grains on top of all those Omega 3 fatty acids, may be working. So now I have a new what if. What if all those tumors are TERMINATED! What if I kept coming at them until they were DEAD DEAD DEAD! Or what if, I just got lucky. Whatever it is, I am taking it and I'm running with it and I'm adding more prayer and more green juice! Here's to you Sarcoma fighters!! The next round of grapes and spinach salads is on me. Thank you, God!

Tomorrow is my eldest girls 8th grade dance. I think it's time to take that digital camera that is still sitting in a box in my closet, out for a photo shoot. Her 8th grade year is coming to a close and though she is excited, she is sad too. The next phase of her life begins in Fall. In two years my oldest child, my son, will be 18. How quickly the time flew. As they grow, I want more and more to have the power to stop time. The moments they are going to be with me are growing fewer and fewer and whereas I am hopeful for their future, there's a part of me that doesn't want to give up the current mother role of caretaker. Our relationship will change more than it already has. I'm no longer mommy. I'm "Oh MOther" or "GEEZ MOM!" or "ALRIGHT I WILL ALREADY, MOM!" or "I KNOW MOM!!" As a mother, I am conscious of the precious moments. As a cancer patient, I am aware that I no longer have the luxury of believing I have all the time in the world. The lesson of the last 6 weeks is that I spent too much time in the what if's. I was researching new trials before I was even done with this one. I forgot that to enjoy my kids, my life and all its challenges, I really need to stay in this one moment, this "RIGHT NOW" as much as I can and avoid living in tomorrow or next year and in too many what if's.

Thursday, May 14, 2009

For all my friends and family, the Sarcoma community and all others going through Cancer.

Wednesday, May 13, 2009

Today I feel very uneasy. It's one more day to the six week CT scan of which I will find out results next Wednesday. One more Sarcoma friend dropped out of the brivanib trial last week due to growth and when this happens, I over empathize. I feel disappointment, anger, frustration, fear, and insecurity. I've invested 18 weeks into Brivanib and I want to see success for me, for everyone on the drug and for the Sarcoma Community in general. Any failure of treatment, any death, is unacceptable to me and I want it to stop DAMMIT! NOW! Billions and billions and billions of dollars spent on the "War on Cancer" and we will more than likely have a man walk on Mars before we figure out how to kill a cell. I know eventually, I will be looking for another trial or will have surgery. I started discussing the next steps with my Oncologist 3 weeks ago. But, as I'm not officially out of this trial yet, it was just a "what if" discussion. Sometimes, I wonder if this was the best course. Maybe I should have gone to a surgeon right off the bat but, I am helping Science and I am helping the Sarcoma community by testing this drug and Lord knows I'm still strong and healthy and like Elsa, can contribute something to posterity by being a pioneer in new therapies. Lord knows Sarcoma patients need them. So onward despite some fears and trepidation and I'll pretend I'm Lewis and Clark on a perilous but rewarding journey navigating unknown territory. They survived and surviving is something I'm good at.

It was a long night last night. I worked my second job and was home shortly after 11. My son was still up worried because one of his friends ran away from home and he was on the phone with the boys parents and the police trying to help them determine where his friend had gone. As I was not quite done with the workload from the first job, I stayed up with him working while he stayed up pacing. When we received no word by 1am, I sent him to sleep and he woke up this morning sick as a dog. His missing friend is fine. He called this afternoon to let him know he is OK. My son didn't fare as well and seems to have come down with the headache, fever, fatigue and crabbiness that I had on my most recent nickel and dime day.

Today, I finally got to the grocery store and just in time. My fridge is vacant and the kids didn't have much to make their lunches with. After I finished checking out and was about to pay, a lady behind me handed me a coupon for $10 off the purchase. This seemingly insignificant action has HUGE HUGE significance for me. As I've alluded to, I work at a retail store as a cashier on the weekends. This store accepts coupons and I am a coupon clipper. Every week, I clip the coupons out of the Sunday paper and whatever internet coupons I can find. But as I do not use ALL the coupons in the paper, I clip them out anyway and I bring them to work with me and use them on my customers. It's only a dollar or two but it seems to brighten days especially amongst those on food stamps and with small kids in tow. This was a gift and I felt it was a small sign that the universe hears me and Someone is watching over me after all.

Tuesday, May 12, 2009

Now that I am over my whine, I am thinking very clearly and am not happy about my little rant here on Friday. I went to bed early on Friday and woke up to a beautiful day the next day, feeling much better. Friday was a bad day and I need to remind myself that I am in control of my life though sometimes, it seems that it is in control of me and the nickels and dimes in my pocket sometimes feel a lot heavier than the stack of dollar bills but though they are heavier, they are worth far far less than their weight would suggest. I need to be mindful not to let the nickels and dimes in my life, dwarf those things that are truly important. For every problem, I can choose my perspective.
Broken oven - Solution: learn lots of stove top creations and go to Home Depot and finally spend all my gift cards on a new grill. Yes, I could use those towards a stove but in July, I have CD coming due that I set aside for unnamed home improvements. I will use on my bedroom and new stove. I want to buy the model I actually want.
High Cell Phone bill - Solution: Teach daughter a lesson by shutting off text capability and have her work off the bill.
Job woes - Solution: Updated resume and am looking for a perfect opportunity that I might like better while doing my best at the current job. My ultimate goal is to return to school but now is not the best time. I can take some online classes if I need to.
Money Problems - Solution: Accept that they will always be there. I am getting by though not as comfortably as I would like to. I will finally make that phone call and come up with a payment plan. As this clinical trial continues, there will be more bills coming in. I have unrealistic expectations of myself that I can pay them all off at one time.

As one very dear friend told me, it will all work out. I feel well and I am grateful for that. My largest tumor is a little more than a cm and I have been remarkably stable. My health is the most important thing. All the other problems are nothing compared to that and I apologize for my rant on Friday. I try not to wallow in self pity for very long.

This week is CT scan week. As I have been on the placebo all these weeks, I have some fears regarding the results. I am hoping things did not get much worse. The upside to that is that they will take me off the poser pills and put me back on the drug until that stops working or destroys the tumors. I am hoping for the latter.

MOther's Day was nice. I worked my second job and enjoyed talking to my customers and coworkers. When I got home, Kris had made me a power point slide show and he and Cass cleaned my room and put the laundry away. Emily returned home from her weekend visit with a bouquet of red roses that she chose for me and was so proud of. They are in my kitchen far far away from my cat Tasha who found the green leaves delicious and knocked over the vase 2 times. After I moved them so it was inconvenient for her to chow on them, Kris knocked them over while trying to get a drinking glass out of the cupboard. Oddly enough, they mysteriously toppled yesterday while no one was in the room. I saw no cat streak from the kitchen wet from water. Amusing.

Friday, May 08, 2009

Life in the mundane

I have a virus, just an ordinary virus that is resulting in a HUGE HUGE headache and a temperature. I can hardly complain because it is such a relief to have something so ordinary and non threatening. Last Friday, I went to a local market for produce. I saw a woman shopping. Her hair was completely covered in plastic. She was wearing latex gloves and a medical mask and before touching her grocery cart, she sprayed it with Lysol and wiped it down with a disinfectant. She avoided all the Mexican workers in the store like the plague going out of her way to walk around them keeping her distance as far as she possibly could. I chuckled a bit at this fear of flu. I would swap the tumors for a bout with a virus any day, even swine flu.

At work this morning, I was hammered about statistics. I work in purchasing and we measure quality by how long it takes from a request to order to when the purchase order is actually cut and with the vendor. We have tools that we use but since July 07, I've been working an account that is not yet defined in our tools. We established a manual process and work arounds but it boils down to me getting an EXCEL spreadsheet with the order and entering it via cut and paste into our ordering tool as opposed to the usual way where all is dealt with electronically. I receive the orders via email which is a point of failure unto itself. After the PO is created, I enter the PO number and ship date etc. into a database which I haven't had access to since December, and a report is generated based on what is entered into that database. I had access to this database but it mysteriously stopped working on Dec 14, 2008 and support has been unable to figure out why. Of course, my company laid off all the programmers involved in this databases creation and all the support we have left is a Word doc with links to the files that I need to download and inttruction how to manually copy and paste the database files from their location on a shared drive to my personal machine. I have uninstalled and reinstalled these files countless times and have yet to regain access to the database and this has been a point of contention with my boss. When I click the database in an attempt to open it, I get an exception error and as I'm not a programmer, I have not a clue what the error means or what exactly is generating it. My boss decided that I should take my laptop in for a re-image as a last ditch effort to regain access. As I am a teleworker, my laptop is my sole access point into our corporate LAN. As we have no backup for broken laptops, it means that I was not able to work while this re-image was being done and I was trying to clear the way to take a day off and have our desktop support install a new image. My boss contacted me on April 21st and asked if I had scheduled it. I hadn't as I couldn't find a day without a million things in it. She said, "We'll have to take it on the chin while you do this. I want this done. I'll get you a backup." Ok, says I. I scheduled it, wrote my boss with the date, and she said she would contact her two dept managers to determine who can do my work. My out of office referred my customers to her and off I went. It took two days to complete the re-image. When I got my computer back, I had to reinstall all my applications which still isn't finished and I had issues getting onto the internet because the desktop person had not configured access. This took two calls to the helpdesk to fix. Once I was able to get onto the internet, I found to my dismay that no one had been assigned to do my work. Over 1000 emails downloaded from the server and I am still working through the fall out. Every week, we are directed to fill in a "Cycle time report" that tracks the misses and late orders. Due to the debacle last week, I had 3 on that report which was not too bad in my opinion due to the fact that my government accounts are hugely busy and installing over 2000 sites this year and this other manual account results in another 80 sites a month. In the world of emailing requests, these requests were simply lost in the piles of emails I received on those two lost days. I updated that they were late because of a "Tools issue" which is a pre-programmed reason code and I woke up this morning to a very angry boss wondering what tool had failed me. My laptop, I said. That resulted in a short rant on her part that I always have late orders and the reasons are not acceptable. As I was out of commision for two days, I reminded her she had promised me a back up. She replied, if the requests were in your email, how would a back up get them? I replied, if you had given me a back up, the team would have known who to send those orders to. *****crickets******

I don't think I scored points today. And to make matters worse, the database still doesn't work on my machine.

NOt the first time I have been through this. I was in trouble a month ago for not doing orders the day I got them. None of the orders were "Late" but I got my feet held to the fire anyway. One of the angry calls I got from my boss occurred two days after my lung biopsy. Same issue. Out of the office for two days because my biopsy had resulted in a slight pneumothorax. I was in pain and it was hard breathing and I was given no backup for those days either. Instead of being in bed where I should have been, I was sitting at my desk trying to catch up. I have heard the "Just be happy you have a job." "Be Grateful." But this mundane, run of the mill aspect of my life is not very satisfying. I am working into wee hours to get things done. Despite my best efforts, there will be issues with these manual orders preventing timely placement and these issues are 99% of the time out of my control. I have become deathly afraid of making mistakes, any mistake. I work in a Catch 22. Mind you, one of the things my boss bombasted me for was "Doesn't ask for help when needed." "Tries to fix issues on her own." DOH!!! My frustration level is hugely high. I pulled up my old resume and started updating it. Next step, start sending it out. Up until my re-diagnosis, my reviews were good. Now, I can't seem to do anything right and with all on my plate, outright publically flogging me is not helpful and I am sick of being uneasy. I know leaving for 3 hours to go to the Dr. every 3 weeks is not going over well either but on those days, I work in the morning, go to the Dr. and work the evening.

Two months ago, I cancelled my sons cell phone because he disobeyed me for the umpteenth time and downloaded from the internet and went way over on his IM limit resulting in a 300 dollar cell phone bill on just his number. It was the third time that he had done that and as I was not expecting that size bill, I did not run to the bank with a deposit which resulted in a chain reaction in my checking of bounced checks and witdrawals and overdraft fees, that is still an issue today. Last month, my cell phone was stolen and used to call Mexico three times. Today, I went to check my cell phone bill and was greeting with another $250 dollar bill when it should be 90. The culprit was Cassie and 120 instant messages all in the past 3 days. Her cell phone is now confiscated and I took away entirely her ability to text.

This morning, I went down to the laundry room only to find a pile of soaking wet laundry piled in the cats litter box. Culprit, my son. Don't ask. He is currently mad at me because I rescheduled his Saturday detention to next week instead of tomorrow with his buddy.

I still don't have a working oven. I have a graduation party for my daughter to plan, a birthday for my son coming up, and I don't know where the time and money will come from for those things.

At this moment, I am not 100% sure which aspect of my life is the most frustrating, the money problems, the job situation, working two jobs, the kids, the mess in the house, living with no back up in either home life or work life, the cancer, the placebo, the pets, the high cost of living, the high taxes or the fact that all I do is work and have little time to enjoy that which I am working so hard for. I bought a plasma TV last year before medical Hell. It's the only real luxury I own. I have watched it twice.

Wednesday, May 06, 2009

We interrupt this blog...

Dear friends,
I need some help for a new sarcoma friend.
Maura needs some prayers, well wishes and thoughts. Whether you're Christian, Buddist, practice Reiki, Muslim, Pagan or secular, please send this family whatever thoughts you can that her Dr. will be successful in getting her into this experimental treatment and that this treatment will work. I've had the honor of emailing Erin, Maura's mother. I want no better Mother's Day present than good news for this mother. Please keep this family in your thoughts and prayers.