Thursday, January 29, 2009

I feel yucky!
Yesterday, I woke up at about 5am with a little rumbly in the tumbly and suppressed the urge to throw up by lying down for a bit before I got up and did some work before heading off to the U of C for my weekly check in. I made it to the hospital, had my blood tested and reported my fluish symptoms to the clinical trial nurse. Before reviewing side effects any further, he stated he wanted my vitals taken. My BP was good and I had no temperature. I told him that I didn't think I felt like poo because of the drug. I headed out suppressing that urge to throw up but pulled my little car garbage can to the front seat just in case. Then I got stuck in traffic and sat and sat and sat. Told God that I didn't think this little cosmic joke was the least bit funny and could HE please part the red traffic sea and let me pass so I could get to the store and to home as soon as possible before I made a mess in my car. Cassie had called to let me know that I needed to pick her up some colored pencils for her Social Studies project and we needed more milk and spring water for my little spastic Beta fish's bowl. I hurried through Walmart, got Emily from daycare and drove home. I just barely made it to the bathroom in time. Then I spent the evening in bed watching Law and Order re-runs and a few old episodes of Cold Case. Emily was so cute and got my little bed tray and a glass of water for me and was very insistent that I drink some. She kept checking on me to make sure I was drinking the water she brought for me. I woke up once more at 1am, threw up some more and went back to bed. A couple days ago, I made myself a cream sauce for my rice and I used expired cream. I'm 99% sure that was what the problem was. I've had a slight temp that has been going down little by little throughout the day and is almost normal right now. But, I'm still feeling a little run down. I am 99% certain I'll feel better tomorrow.

I'm noticing that the side effects have been decreasing in intensity as I go along. I still feel the usual few hours of fatigue but I'm not so light headed and I sometimes am incredibly thirsty. Apparently, I am the first person to report thirst as a side effect in the U of C trial. I'll be scanned in a couple weeks to determine if this thing is actually working. I'm very nervous but don't feel any aches, pains, shortness of breath, or anything else. I am very sensitive to aches and pains. If I feel even the smallest twinge, I'm worrying. I know it's paranoid to worry about every little thing as being cancer related. After all, I'm over 40. Some of these things are just side effects of being middle aged and have nothing to do with anything but that.

Tuesday, January 27, 2009

Things that piss me off

1) Laundry. It's never ending. Over the weekend, I put at least 5 loads of laundry away. Today, it's bbbaaaack!

2) Why do my children insist on putting empty boxes back into the pantry. They take the last of something and instead of throwing the darn box away, they shove it back into the pantry. I know why they do this. They think that if I see the box there, I won't know that it all got eaten. Eventually, I figure it out. The wrath may be delayed but they get it and an extra yelling at for not throwing away the empty.

3) Why can't my children put the DVD's back into the covers?

4) Why can't my children change the toilet paper roll? On the same note, the bath was without toilet paper for a week because neither of them could go get another roll. They used the Kleenex until I got sick of waiting for them to take some initiative and I went and got some more myself.

5) "For English, press 1" "For Spanish, press 2" "For Polish press 3"......

6) Wet pavement that sprays my windshield with dirty, road salt and I use a full container of window cleaner on one trip to the store.

7) My Alarm Clock

8) Stepping in wet cat yak on my way to the bathroom or waking up to the sound the cat yakking on my bed.

9) The 850 Billion Porkulus bill disguised as an "economic stimulus package."

10) Road Construction and potholes and traffic, Oh My!

11) A gutter ball after a spare.

12) The little plastic band-aid thingy's never get thrown away. They just get left on the counter or on the floor of the bathroom.

13) "We must do/enact "Insert liberty compromising stupid ban here" for the children.

14) Jon Stewart, Bathtub Boy Olbermann, Andrea Mitchell, Chris "I get tingles" Matthews and all the rest of the slobbering idiots that call themselves "journalists"

15) The Political Correctness movement. IT'S A CHRISTMAS TREE NOT A HOLIDAY TREE!

16) People that use a $100 bill to pay for a 98 cent item.

17) Why does every single light and TV have to be on in this house?

18) Taking a shower only to find that one of my kids left the bath towel in a wet heap on their carpet instead of hanging it back in the bathroom to dry.

19) Where do all the socks go?

20) Writers Block. That's all folks!

Thursday, January 22, 2009

Nothing new and exciting has happened here on this front.
The kids are back at school after their 5 day weekend. THANK GOD!! All the infighting and bickering was driving me crazy. Emily is doing well on her medicine. She is a little easier to deal with and the medicine hasn't taken away her Emily-ness. The little girl who insists on wearing mismatched clothing, writes her name on absolutely everything, dials 911, tosses toys everywhere, and is louder than any other child in the house, is alive and well. Parents of children who behave normally, don't understand what a victory it was to sit and have dinner and spend it actually eating and not chasing and shushing and yelling while dinner sits on the table getting cold. Parents of less hyper children can take their child to a movie without having to worry that their child will disrupt the house resulting in them having to leave and wasting that $10. They can take their child to a store and actually shop and not have to spend their time trying to keep their child from pulling clothes off racks and throwing them on the floor or stopping a hysterical tantrum because their child wanted something and they commit the cardinal sin of saying "NO!" They can take their child to a restaurant without having their child stand on a chair and tip it over, spill their drink, insist on sitting UNDER the table, or play with every conceivable thing on the table thus spilling salt and pepper, toppling water glasses, and throwing food. Save the movie example, Emily has done all of these things. It was to the point where I shuddered every time I had to take her out in public and dreaded it. One recent trip to Chef Paul's for some good German food went well until the very end when Emily ran around and around the table, then grabbed a stack full of to go boxes from the wait stand and screamed when I told her to put them back. After I made her sit in her seat, she kicked the table and toppled her Pepsi spilling it everywhere. That's when we all got up and got our coats and said, "Wouldn't it be nice to go somewhere and not HAVE to leave?"
I took Em out for a test run last Tuesday. We went to the store and then out to eat. I was nervous but Emily was great! She behaved. She ate her dinner. She didn't leave a trail of destruction in the store. It was wonderful! Many of my cohorts in the natural and holistic community recommended treating her ADHD with fish oil and herbs and warned against medicating her. I am glad that I decided to medicate her. It's really made such a huge difference but she is still Little Miss Independent and insists on dressing herself, making her own breakfast (under mom's watchful eye of course)and putting on her own shoes, coat and hat. My theory on healing is to use the best of all worlds and hope for synergy. This child can rule the world if she can just learn to rule herself. She is smart and creative and funny and she does things on her terms. She is a survivor, a fighter, and a great kid. Despite all the difficulties with her behavior, I just can't imagine not having Emily around. Those who focus too much on how loud she is or difficult can be, are missing out on how funny she can be or all the smart things she says. They are missing the big picture by focusing too much on her imperfections. The best thing about Emily is, she likes me. My teenagers, Kris and Cassie, are off in their own little worlds and there isn't room for their embarrassing mom anymore. I seriously don't have to do anything to embarrass them. All I have to do to embarrass them is be seen in their presence amongst the teen set they hang around with. Cassie is currently sitting here yelling at ME because she didn't put her favorite DVD back in the cover and it is now missing.

Yesterday was appointment two at the U of C. It was an easy one. I drove there and it took 90 minutes. I went and got my blood tested, had my BP taken and my temp (BP was a little high but they said this med has a tendency to increase BP). 20 minutes later, I was in the car driving back home which took another 90 minutes. I spent the evening working to make up for the 4 hours I was gone and worked until 10:30. This morning, my back is tense from all the sitting.

Life in the fast lane!

Monday, January 19, 2009

Just another Manic Monday

Back at work.. YAWWWN.
As usual, I worked my hours at Big Box Mart and that pretty much killed my weekend. Suddenly, there's been a resurgence of people out buying crap but most has been necessity items and very little luxury items. On Saturday, I left the kids home and went to see "The Wrestler" with my brother and his friend. I would strongly recommend it. I'm not a big fan of Mickey Rourke as I find him a bit creepy BUT, I saw "9 1/2 weeks" back in the day and that movie just bothered me and I've avoided movies with him in it since. Emily has learned to write her name and she is very excited. She's so excited that her name has been written everywhere, on note cards, on my bills, in my checkbook, on walls, entertainment centers and little scraps of paper she finds lying around. Emily has always loved pens and she knows how to use them! Before she learned to write her name, she drew smiley faces. I have smiley faces drawn on my comforter in highlighter pen. And there is a stick man she drew in pen on the arm of my couch which I noticed before our NYE party. "Well, at least he's smiling" says Joe. I was not smiling. There's a smiley on the couch cushion and she drew a big smiley on Cassie's wall in green Sharpie. Though I tell my older kids to please not leave these writing implements lying around, it's beyond their scope to actually listen to a thing I say and then they whine when they open their notebooks and see that Emily has drawn a smiley there.
All the kids have been home since Thursday since the Chicago area has been hit with snow and cold. It was -15 on Thursday night without the windchill and it has snowed every day at some point. My driveway is getting narrower and narrower while places to put the new snow are getting harder and harder to find. One of my customer told me yesterday that we are only a few inches shy of meeting the record set in the famous triplicate blizzards of 1979. My dad took pictures of the three of us in front of the snow drifts which were at least 5 feet high. I've had my fill of bickering and fighting and can't wait until they go back to school tomorrow. We've entered into a heat wave now so they should be able to trek to the bus stop. It's a balmy 10 degrees. Whip out the shorts and tank tops!!

It's been 6 days since I started the Brivanib. About 20 minutes after I take it, it feels like a shot gunned a beer. My head feels a little light but that lasts maybe 20 minutes. 4 hours after I take the drug, I'm ready to lie down and take a nap and I'm also incredibly thirsty. On Friday, I had such a craving for a huge glass of ice water.... The fatigue lasts about an hour and then I feel fine the rest of the day. After a large glass of water, the thirst goes away and I spend the afternoon running in and out of the bathroom. The first three days, I felt a little nausea around the 4 hour mark but when I had a little food, I felt better. So, so far so good. I was worried after reading the trial overview about two things 1) That the side effects would be so bad, I'd have to leave the study and 2) the drug doesn't work. The first part is no longer a fear...The second...we shall see.

Thursday, January 15, 2009


I sent my alarm clock for a nice and early 5:00am yesterday as I needed to be at the hospital by 7:45am. I made my breakfast, packed a lunch, my puzzles, some books and my thermos of coffee and set out on my adventure. Lo and Behold, the National Weather Service was WRONG again. White stuff was falling from the sky burying my car and they called for clear skies. Crap! Everyone who lives in a big city knows what any form of precipitation means. It means that it was going to be a VERY long trip to the U of C. The streets were essentially unplowed and I slipped and slid down the street, down Irving Park Rd until I merged onto the Expressway where I stopped slipping and sliding and sat and sat and sat. At 7:15, I had barely gone 10 miles and I had already been sitting in the car for an hour. I called the U of C and told them I was going to be late and inched along the highway, my speedometer barely leaving 0 most of the trip and got as high as 25 at one point. At 10:15, I finally arrived at the hospital my journey taking a little over 4 hours. I checked in and was sent to the Infusion Therapy Dept. Infusion Therapy is essentially "The Chemo Room." Those scheduled to receive their chemo via IV, are taken to a little private room with a chair that looks a lot like a dentist chair. There is a table and a TV and they receive their Chemo via a pre-installed "Mediport" that is usually installed in their chest. The room was packed and for the first time in a long time, I felt fortunate. I was taking an oral pill. I was able to walk into that room on my own volition and I don't look like someone has sucked every red blood cell out of my body. My time in the infusion room was short. After the phlebotomist set up the pic line in my hand and took 5 vials of blood, the clinical nurse delivered my two bottles of Brivanib which I was required to take in his presence. Then I was sent to my own devices with instructions to be back every two hours for a blood draw, the last draw at 5pm. First order of business, find a place to drink that thermos of coffee!! I found a comfy chair on the 4th floor and read and drank my coffee until my next blood draw and get over the little buzz the medicine gave me. After my noon blood draw, I wandered back down to the 4th floor atrium and found an area with a table and some couches. The area was sectioned off and three women were sitting at the table. I poked my head in and asked if I could sit on one of the chairs. On Wed, a cancer support group meets in that area. Because of the weather, no one had shown up and so I became the honorary member. Two of the three women left and the third woman, also named Cathy, asked if I wouldn't mind signing in just so she can take it back to the boss and show them that at least one person came for the meeting. I signed the paper and she and I started talking and we talked until my next blood draw. We talked about healing and what it is and how to really achieve it. I told her my story, not just with cancer but with the ED as well, the journey, the learning process, all of it.

I have spoken to other cancer patients either at the Relay for Life, online, at the hospital, and even while checking groceries at Wal-Mart. We all have different ideas about how to heal. Some patients will not look past the empirical. If it hasn't gone through a clinical trial, they won't look at it and bombast others for falling for a snake oil scheme. I came across an angry patient on a bulletin board who insisted that there is absolutely no proof that CAM therapies work and threatened to report anyone who talked about any CAM therapy. On the other hand, I also talk to people who refuse to look at Western medicine and adhere strictly to nutrition, yoga, meditation, and prayer. They find Western medicine abhorrent and I can't blame them. Many have turned to natural therapies after many rounds of chemo, they had many parts of themselves chopped off, and after Oncologists who refuse to listen to them or write them off for dead. I've seen miracles and inspiration on both sides of the aisle. Regardless of whether they opted for the traditional, the holistic or a little of both, they are thriving, they are fighting, they are surviving even against the odds. I theorize that there is no one way to healing from cancer and the road we take as patients is as individual as the genes that brought us to this point. There's a non-empirical, non-measurable part of every survivor, call it soul, or spirit or will, that keeps us going and drives us forward. But to ensure optimal outcome, we need to BELIEVE in the course we are taking. The state of the mind, drives the body and the mind is incredibly powerful. I told her that the number one thing that patients need to do is learn to handle the fear and I'll admit there are days when I am fearful. Who wouldn't be? Cathy said "Sometimes, when you're in the Labyrinth, it may seem as if you are closest to the exit and it is usually then that you are really the farthest away and vice versa." Even though it seems as if you haven't gained much ground, success may be closer than you think. She thanked me for the conversation, for sharing these bits of my own story. I like to think that there are no cooincidences. At the moment that I entered that atrium, I was where I was supposed to be, doing what I was supposed to be doing. In some way, I may have helped Cathy be a better cancer group leader and from her I received some encouragement and support at the time I really needed encouragement and support. Sarcoma patients, tell your story and keep telling it. You don't know who may influence or what seeds you plant by telling it. Your struggles teach others how to fight and inspire others to keep going and remember, that in the labyrinth, even though you may feel as if you're the farthest away from the exit, you may be closer than you think.

Tuesday, January 13, 2009

All day yesterday, the National Weather Service was warning of a huge blizzard, lots of wind, blowing snow, cars in the ditch.. My kids were salivating as they expected a snow day. Snow started falling around 5:30 but the roads were crowded with people way before that as people left the office to get home and batton down the hatches for the big storm. We got ....nothing! I woke up this morning to sun streaming through my window and nary a snowflake. Kris was devastated as he actually had to take the final he didn't study for. It did get gosh darn cold. The high tomorrow is expected to be 0 and it is my first day downtown for my first dose of Brivanib. I have no idea what I am going to do there all day but, I went to the store to get a lunch bag and thermos, some puzzles and some comfy clothes. I'll add a book or two along with my Cisco text book so I can start learning about switching. I'm not sure how I feel other than nervous. As any patient will tell you, the only thing worse than going through cancer the first time, is having to go through a recurrence. It's devastating, like the universe and your body has stabbed you in the back and betrayed you and even more so when your diagnosis is a rare disease like Sarcoma and the options are few and the options you have are painful and body altering.

Right now, I am completely lacking deep thoughts and so it is off to bed for me as I pray that my results in 12 weeks will be encouraging.

Good night and Good luck!

Sunday, January 11, 2009

16 Random things...for Nonalee

Every now and then you get one of those getting to know you thingys in your email. I rarely fill them out because generally I'm running off somewhere or doing something else or getting distracted. But tonight, in a feat rarely performed in my email inbox or anywhere I occupy in Cyberspace, I will take part in one. This is for Nonalee who sent it..

"Rules: Once you've been tagged, you are supposed to write a note with 16 random things, facts, habits, or goals about you. At the end, choose at least 16 people to be tagged. You have to tag the person who tagged you. If I tagged you, it's because I want to know more about you!!"

1) I am a politics junkie. I'm not Democrat. I'm not Republican. I am Libertarian. I did NOT vote for Obama. I live in Chicago and do not vote for politicians that come out of this city. They are all crooks. That said, I put faith in individuals not government. Thomas Jefferson said "A Government big enough to give you all you want, is powerful enough to take all you have."

2) M&M's, Almond Joys and Mounds bars are my FAVORITE candies, that is when I ate sugar. Now I vicariously enjoy them.

3) I won an essay contest when I was in the 8th grade entitled "What Freedom Means to Me." I won a $100 bond, a nice certificate, had my name in the paper and the Congressman who sponsored the Essay contest came to my school to give me the award personally. They pulled me out of gym when I was all sweaty and gross and captured that image for posterity in the Downers Grove Reporter.

4) I rarely watch TV. I either listen to the radio or surf the net instead. The only time I ever watch TV is when I'm ready to fall asleep at night or am sick in bed. When I do watch TV, I watch TNT.

5) I play the piano. I started when I was 9 and have taken lessons on and off since then. I currently am on a break from my lessons but will start again as soon as some things are out of the way. When I was in college, I played piano at two banquets. I have terrible performance anxiety and rarely play for anyone other than myself, the cats and the dust bunnies.

6) When I was in the 8th grade, I took roller skating lessons. After a few lessons, the instructor took me aside and told me I had natural skating talent and should take private lessons to develop my skills. My parents Kaboshed that idea and I never became the next Peggy Fleming.

7) I am a RECOVERED Anorexic/Bulimic and suffer from clinical Depression and Generalized Anxiety Disorder which I have managed without medication for some years. It was my first victory in the many battles I've had to fight with myself. I still talk to some young women and sometimes men who suffer with Eating Disorders. I hope I showed them that they can recover and that there is a life beyond it.

8) I am allergic to most metals. I have pierced ears but around my 19th birthday, I couldn't wear earrings anymore as they would make my earlobe swell and itch. I found that the only jewelry I can wear is a necklace. Any metal on my skin too long causes a rash.

9) I collect Depression Glass (Glass manufactured during the Depression Era) and Elegant Glass which is a finer grade glassware made during the 20's - 70's. I have a huge cabinet full of it and I could probably furnish my house with what I paid for it but I love it! It's one of the things in my life I love doing most. YAY ANTIQUING! YAY DEBT!

10) I was part of a Ghost Hunting group for about a year. I have always been interested in the paranormal. Did I find a ghost? Oddly enough, not really on my ghost hunting expeditions but the townhome I was living in had some very odd goings on. The people I sold it to, moved out when they saw the figure of a little girl in the upstairs bathroom. I have a few stories about life there as well though I never saw anything.

11) I am afraid of heights and I get nervous on bridges over large waterways like the Mississippi river. I go to Iowa to visit friends and when crossing the I80 bridge over the Mississippi, I always drive on the inside lane with both hands on the steering wheel, holding on for dear life.

12) I eat everything and I mean absolutely everything including tacos and pizza with a knife and fork. Well, maybe not soup but, you know what I mean.

13) My favorite beverages are coffee and beer from Micro Breweries. I rarely drink anymore. When I drink, I want a GOOD beer. Amber Ales, Bock and Brown Ales are my favorites. YAY DRUNKENESS!

14) I have a smart ass 15 year old son who is standing over my shoulder saying smart ass things about what I am writing.

15) I used to be a blonde, a natural blonde. During my college, my hair turned brown and it is still brown with those annoying little gray strands which I pick out with tweezers when no one is looking.

16) I can't stand peanut butter and I never could stand peanut butter. I do like Thai Peanut sauce and peanut soup but peanut butter...BLECH!

There ya have it. Proof that I am 100% BORING! I never won a Pulizer. I am not a closet millionaire. I did not save millions of lives.

This concludes our broadcast day. Have a good night :)

Friday, January 09, 2009

I swear officer.......

I have now returned to life in the matrix for another week.

Tuesday night, while I was talking on the phone, the doorbell rang. Outside stood a police officer. Quite surprised, I asked if there was an issue. He said that someone from my number called 911. As I was on the phone for at least an hour at that point, no one could have called 911. I assured him everything was OK and that it must have been a mistake. He seemed satisfied with the answer and left. The next day, the police called asking if someone called 911. Again, we stated no one called the emergency number. Perplexed, I remembered an officer telling me that sometimes, when a cordless phone was not functioning correctly, it would dial 911. A bad phone didn't seem too outrageous. I have 3 kids and bought a nice new phone system with a base that was placed in the kitchen and two cordless phones that could be placed elsewhere. We put one phone downstairs and one in the Living room. Now, I have teenagers. The cordless phone has been lost in couch cushions, shoved in Emily's toybox, stuffed in drawers, cabinets, kicked under the bed, left in the bathroom, the shower, and left in the garage. One of my handsets stopped working when one of my rocket scientists left it in a laundry basket and washed it. So now, we are down to one, decrepit handset that I found behind my brothers desk this morning. The speaker phone no longer works and the ringer has long since died. It's a silent, decrepit phone. Yesterday, while I was at the bowling alley for my usual Thursday night excercise in futility, ie keeping that gosh darn ball on the alley and hit pins, Cassie called to tell me that once again, the police called inquiring about a 911 call. Darnit! says I. After Emily dumped water on my laptop, Christmas, and New Years, I just don't have the money to replace the broken down phone but if I have to, I have to. I thought nothing of the 911 incident anymore until my doorbell rang this morning and out there stood another officer of the law. Before she could even open her mouth, I said "I swear officer, I did NOT call 911." "Well someone did from this address" she said, obviously annoyed. I stated my dead, decrepit phone theory, but she said no. The 911 operator stated she heard a small child in the background.. AH HA!!!! EMILY!!! At this point my precocious child peeked around the corner, saw the officer standing there and ran. "EMMIE", I said, "Did you call 911?" Em peeked around the corner and didn't answer, then said "Am I going to go to jail?" The officer yelled at her and told her that calling 911 when you didn't need it, resulted in pulling her away from calls from people who actually needed help. Em ran away. The officer told me to talk to my child. I apologized profusely. I went and checked my cell phone and sure enough, there in my dialed calls was 911. As for why Emily called 911, my precious child, has a little crush on a little boy at daycare named Tommy. Tommy's dad is a police officer. She thought by calling 911, she could talk to Tommy. Kinda melts your heart.

Believe me, Em is doing very well on her Strattera but this was not the act of an ADHD child. This was just a precocious 4 year old who is too smart for her own good. I felt after that, it was time to take her to daycare. As I was dressing, I heard a pounding noise. "Em, what are you doing?" "Nothing" she said, "my hand is."

Out of the mouths of babes.

Wednesday, January 07, 2009

It's been a long day.

My first trip to the U of C for my trial was tiring. It snowed today which means that a normal snapping turtle walking aimlessly along the Eisenhower Expressway could have passed me up. My appt was at noon. I checked in and was sent to the lab for a blood test. Veins had lost their tude today so the 5 vials of blood was a breeze! Then it was off to the Heart lab. I had an EKG and an echo cardio gram. My blood pressure was good 112/60 and the test required that I lie there and relax. Who can ask for more? I was actually amazed. I barely waited for any test. They took me immediately at the blood lab, immediately at the Heart lab and I didn't have to wait in line for 30 minutes waiting for the Valet to park my car. After my battery of tests, I went back to Oncology to see the nurse and Dr. in charge of the clinical trial. It's been almost 3 years since my diagnosis and the word "Oncology" is still as daunting as it was on Day 1. As I waited in line to check in, I still couldn't believe that I was standing anywhere with a sign that dared insinuate I have rouge cancer cells. The waiting room was completely full. One woman was knitting. Definitely a sign that my no wait day was about to end ....and it did. After 90 minutes, I tapped the desk and asked if they were absolutely sure they let the Dr. know I was here.

I always look around the waiting room at the people that are occupying space with me. Most are old. Some look sick. Some don't. I feel out of place. I'm young and sometimes I catch an older person staring at me too. Today the waiting room was packed and people spilled out into the hallway to sit on folding chairs. I wonder what their stories are. It's impossible to tell which are there with Sarcomas. One Sarcoma patient told me that what we with rare cancer feel is "Cancer Envy." It's when we with a rare disease with only limited therapies available to us, most experimental and a kind of cancer that has no awareness, very little research funding, walk into a waiting room full of women with breast cancer and are jealous that they have options and awareness and little pink ribbons, and every single grocery product in October has a pink label. They have the Susan G Komen foundation and the Y ME breast cancer run. We Sarcoma patients get blank stares and travel the US trying to find one knowledgeable Oncologist who cares and knows anything about Sarcomas. We fight for places in Clinical trials. We don't look forward to "remission." We look forward to "Stability." I noticed I suffered from cancer envy the first time I returned to my Thursday night bowling league and participated in "Bowl for the Cure." The USBC has a campaign to raise money for guessed it "breast cancer." When I participated in Relay for Life, pink shirts lined the track. Besides me, I ran into ONE Sarcoma patient besides me and from what I have been told that was rare. NOt that breast cancer isn't a rotten to the core disease that needs to be anihilated. NOt that I haven't had a family member who died from Breast cancer. But, caught early breast cancer is curable. There are pages and pages and pages of therapies. There are scads and scads of Oncologists and in every cancer center, every Dr. knows about Breast cancer. Not so with Sarcoma. When my lung biopsy came back positive for sarcoma cells, my Oncologist had literally NO idea what to do with me. He had no idea which chemos worked. He had no experience with the disease. All he could do was ask around and ask other Oncologists if they had a name of anyone in the Chicago area who treated the disease. When you live in an urban area as I do, there may be one. If you live in the sticks, you travel for hours to find your specialist.
So here I am in a clinical trial for Brivanib. I refused the results of my scan two days ago and decided mentally, I'd be better off not knowing. But, I did consent to know the results of my blood tests. The Dr. said my blood is absolutely perfect and she said, I looked great. As expected, my Blood pressure and temperature rose the minute I walked in the door but my body does funny things when I am anxious.

Next week, I return for the drug. I check in at 7:45am next Wed and I am to be there alllllllllll day. I guess I need to pack a lunch. There is a cafeteria but after 10 days at the hospital over there, I know for a fact that the food is really really awful and the University of Chicago is not close to anything except really big houses.

So much for being kicked out of the study due to NED.

Monday, January 05, 2009

Re-emerging from the Matrix...

The holidays are over. The tree is down and back in its box and the last of Christmas was packed in boxes and put back under the stairs. New Years Day for me, is the last day of Christmas. As usual, we spent it on the couch watching movies, recovering from NYE which was very nice this year. I worked my normal shift at Big Box Mart this weekend and last night, I laid down to take a little nap and woke up at 7:30 this morning. All my co-workers were back from their holiday vacations, my inbox was full, and at 4pm today, started the first steps back into Cancer-land. I slugged down my two bottle fulls of Barium. UCK!! After a full day of fasting, you would think they would provide a better tasting radioactive compound that is at least thirst quenching. I couldn't even have any water. Then, went to the hospital for the trip down the rabbit hole to Cancer-land. Only instead of Hookah smoking characters and the mad hatter, we have mad Dr's, radioactive isotopes, needles, scanxiety, and sometimes and I mean sometimes, some really really good drugs. There was something sobering about handing the intake worker a script for the scan that said "DX-Metastatic Sarcoma" a nice and depressing reminder that the illusion of the matrix was gone and I was stuck looking straight at the energy sucking reality of this disease. So, after getting poked three times in the arm because of stubborn veins, through the medical rabbit hole I went. After the first batch of pics, the tech came out to inject the dye and asked if I already started the chemo. I said no. He said, so you've had no chemo or radiation at all? No, I said...just radiation to the tumor. As a cancer patient, I read too much into everything. I look for looks on the tech's faces. Do they look piteously as I leave the room? Do they smile? Then I overanalyze everything. Do things look normal? Is that why he asked if I started the chemo? My fingers are crossed that my nutritional protocol finally started kicking my rouge cells in line. But my kids don't listen to me immediately. Why should my rouge cells? I'll keep kicking those cells in line with broccoli and fish oil!! That will teach them! We got some extra pics of my liver. After seeing the alarm on my face, the tech said that one small pocket didn't take up the dye normally and it looked like I have a small cyst. Because of my history, he wanted to be sure. Great! Another thing to worry about. Double Broccoli!! Double Omega 3!! Double green juice!! Thus ends my entry into Cancer-Land. On Wednesday, I go to the U of C for an EKG and Blood work. Hopefully by then, my veins will have adjusted their attitude, the Dr. will not make me wait two hours and the tests will be a breeze. In my little matrix world, the nodules will have resolved themselves and I'll be kicked out of the study due to NED :) I can dream can't I?