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Have your people call my people and we'll work something out.
2008-02-25 16:01:00
for those of you that have been checking my blog to see how the pre-op appointment went...i apologize for not updating sooner!!! Dr. T, my surgeon, was called into emergency surgery last week and they had to reschedule my pre-op appointment for this tues, feb 26th at 4:30. the good thing is that morning, he is meeting with several other doctors during a "small tumor and kidney conference" and they will be going over my scans, laying out/finalizing my surgery plan, etc.so, i will try to update the blog in a more timely manner this time. sorry team bean saver!
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The little engine that could...
2008-02-18 17:28:00
i think i can, i think i can....i KNOW i can, I KNOW I CAN!!!!! The 3rd and final round of sutent worked...you can see the veins that connect the kidney to the aorta now. the cancer surrounding them has been reduced so much that you can see them! the surgeon can see them which means he can get the kidney out! i am no longer in the "inoperable" category. what seemed like an unachievable goal 5 months ago has been achieved...phase 1 accomplished. dr. doom is so pleased with my response to the sutent, he is all smiles each time i see him now. that just feels wonderful.the pre-op appointment with my surgeon is this thurs., feb 21st. i am excited and scared at the same time. the earliest that surgery could be scheduled is the first week in march. they cannot operate until i have been off of the sutent for at least 1 month. my last pill was jan 30. i have no idea when they will actually schedule the surgery however, i only know the earliest possible date. i expect to find out when they wa...
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Worse than the dentist
2008-01-31 15:19:00
last night was my last sutent pill for this round. the side effects hit me hard at the end of this cycle. they tend to build up, but this time it was like a smack in the face one morning....BAM!! we're here! tongue peeling, sensitive mouth, lack of taste, painfully dry skin around my nose and in other random places on my body, nose bleeds, fatigue and the never ending bathroom visits. oh joy! although i have mentioned that the side effects are a small price to pay if the "miracle drug" is working, it is definitely worse than the dentist.right now i am looking forward to a few weeks of normalcy...the side effects will slowly subside now and i just need to relax until my scan on feb. 11th.once again, finger, toes, arms, legs all crossed....it seemed to work last time so what the hell!
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Dates, Dates and More Dates...
2008-01-27 20:41:00
this is just a quick update on all of my appointments coming up. the Jan 23rd appointment went as usual, the only thing that came out of it was that they reduced my thyroid meds from 75mcg to 25mcg. other than that, same ole same ole. i was fighting a head cold last week which is not a good thing to have to do when your white cells are down because of the sutent, but i managed to kick it to the curb. :)okay, the upcoming appointments...the first one is on Feb. 11th for my next scan, yes, yucky, nasty, disgusting drinky dye. uuuggggggg. i have a follow up appointment on feb 12th to look at the scans and talk about next steps. then, on march 11th i have what will hopefully be a pre-op meeting with the surgeon. that's it. the only addition was the feb 12th appointment. i'll update if anything changes.tootles.
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One small step for WOman...
2008-01-12 05:45:00
one week into the sutent cycle. side effects are minimal still so i try to take this opportunity to visit with friends...before i get too tired and before my white cells are down too much. this time, i am still basking in the glow of good news of how great the drug is working...so much so that i am starting to take my life back. starting to see more and more of my friends and meet new ones. wanting to celebrate this first step in a long line of steps to beating this. i want to scream from the rafters...i want to brag to anyone who will listen....I AM WINNING!!!!one thing i want to bitch about. the sutent is really messing up my thyroid...they upped the dose to 75mcg because the second round of sutent messed it up more than the first. unfortunately, it takes the body a while to regulate itself with the help of the synthroid...5 to 6 weeks. so, in the meantime, my hair is falling out like crazy. not in clumps like with chemo, just all over like old age. this is a side effect of my thy...
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Mmmm....Mmmmmm...Sutent.
2008-01-05 19:15:00
can you hear the Mmmm...Mmmmm....Campbell's tune playing in your head as you read my title?HA! Back on sutent for what is hopefully the last round before surgery. started thurs night, so what is that, the 3rd....so, last pill is on jan 30. only 26 more pills to go. w00t! okay, okay, so small things make me happy now. i don't really have any interesting news to tell today, just wanted to document the start of a new cycle. carry on friends and loved ones...thanks for reading. keep on keepin' on and all that jazz. l8tr!

I AM A CANCER KILLING MACHINE
2008-01-03 16:53:00
Jan 2nd. follow up appointment. dr. dooms assistant, the immunotherapy coordinator comes into the room and has a big ole smile on her face. she says that dr. doom has plans for me and that i should be so excited. we chat for a bit and then she leaves as we wait for dr. doom.dr. doom comes in and starts off with his usual straight forward no emotion attitude and says that we should go look at the the scan first and then come back and discuss next steps. Field Trip!we all proceed to the mobile monitor in the hallway and wait as he pulls up my first scan from august and my dec 27th scan. he proceeds to point out the progress i have made. it is absolutely amazing!!! i AM a cancer killing machine thanks to my miracle drug sutent! i have an overall average of 50% reduction. the cancerous tissue in and around the kidney itself had been reduced by 50%!! 50% with only 2 full rounds of sutent. the best part tho...the icing on the cake is that the cancer "wall" surrounding my aorta has also be...
More About: Cancer , Machine , Killing

Dec 28th - the big call
2008-01-03 16:45:00
waiting, waiting, waiting...it is the worst thing. i hate waiting...trying to keep your mind off of what you are waiting for.ring, ring...FINALLY, the dr calls. he says that the scan shows that i have had some reduction. he needs to talk to the surgeon to see if there has been enough reduction to operate. he is in a hurry to get off the phone and try to get in contact with the surgeon.good news. the drug is working. it is actually working. i am now among the 30% of patients that the drug actually reduces the amount of cancer, not just slow the growth.yippie. another good day. after so many bad days it is great to have a good day. my luck has been so terrible...could it finally be my turn to have some good luck?!my follow up appoint to see my scans and get word about surgery or no surgery is Jan 2nd.fingers, toes, arms and legs all crossed again.
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Scan Day - Merry Xmas
2008-01-03 16:16:00
December 27th has finally arrived. My anxieties are high. i don't want to drink the nasty dye. i get to my appointment on time and am taken back into the "drinking room" and get settled in the little hospital bed to get my drink on. this time, they off me an alternative to the 6 mega-shots of nastiness. they offer me what they call a "Banana Smoothie" and i only have to drink 2 10oz cups of it vs. the 6 6oz cups of nasty. supposedly the side effects aren't as bad either. BRING ON THE BANANA SMOOTHIE!well, let me tell you, banana smoothie it is not. oh yeah, it smells like bananas and looks like a white half melted milkshake, but it feels and tastes like milk of magnesia. it is disgusting. but, i dont have to drink as much of it, so i drink on. halfway through the first 10oz of yuckiness, my banana smoothie decides it wants to come back out and i grab the nearest trash can which just so happens to be the same height as the bed. hmmm, i guess im not the first to need it. manage to...
More About: Scan , Xmas , Merry Xmas , Merry

Die, die, die my darling!!!
2007-12-19 20:11:00
i am a walking, cancer killing machine...or so i hope! tonight is my last sutent pill in round 2 of the sutent cycles. thankfully, i wont be feeling like ass over the holidays since my 2 weeks off starts tomorrow. yippie! the side effects will slowly subside over 4 or 5 days and then i get to have over a week of normalcy. its funny what you start to be thankful for...i am thankful for feeling normal for a day. w00t!the only day that will suck is the 27th, the day of my scan. my onc nurse told me that i will have to do the drinking dye, not just the IV dye. yucky mcyuckerson!! i have had 5 CT scans and have only had to drink the dye once. that stuff is disgusting. they give it to you in 6 cups, like they are lining up shots on a bar. then they ask you what your favorite drink is so they can add it to the cups to "cover up" the taste of the dye. NOTHING can completely cover up the taste, but ginger ale does a pretty good job. anyhoo, you have to drink each of these mega shots within ...
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2 Dollars - I want my 2 DOLLARS!
2007-12-17 02:31:00
The drug that i continue to refer to that i am on, sutent, is a whopping $8500 for 28 pills(1 cycle). and no, i didnt forget the decimal point. with my insurance, i pay $2500, then all Rx after that are completely covered because 1 cycle of sutent alone meets my deductible. the reason these little capsules of diamond dust cost so much is because the drug is so new and only available through pfizer. the drug also has limited use currently because it has only been tested on a few things. if they found enough other uses for it, the cost could come down. this is another reason the post below is so exciting. whether my nerve bump is related to the cancer or not, the fact that the sutent seems to have an effect on it is big news in itself. if i was a dr. with a patient that could put me in the the pages of medical history, i'd be pretty damn giddy too.
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Dr. Doom DOES Laugh!
2007-12-12 01:17:00
3 weeks into the sutent cycle, i have to have my white cell count, platelets and hemoglobin checked to see if i can safely finish the 4 week cycle. so, today i had my 3 week checkup. i wore my "My oncologist is better than your oncologist" t-shirt...hoping for a smile to appear on dr. dooms face like at the end of the grinch that stole christmas. not only did i get a smile, he was laughing and blushing...it was great. i told him that it is my goal to make him laugh every appointment...he told me that it is his goal to get the bad kidney and ovary out of me.after my exam, he started talking about his hopes for being able to talk surgery in the first of the year...after they get a look at my scan on Dec 27th. I was in shock...he never talks about maybes...he is usually straight to the point, no fluff, nothing that isnt based on fact. But today, today he was hopeful and very optimistic about how the sutent is working. today was the best day! I was re-energized with hope...im not overly...
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Sutent - he loves me, he loves me not...
2007-12-03 04:16:00
this post will be short. the side effects of the 50mg 4 week cycle of sutent tends to sneak up on you. the first week or so into the cycle is not so bad, after that, the side effects start to build up. you have good days and bad days...bad days include extreme fatigue or not being able to stay out of the bathroom and having to force yourself to go do something cuz you know it is good for you to get moving...even if it is just to the store for a quick outing. good days include less time in the bathroom and enough energy to feel almost normal again. today was one of the bad days and im barely in the middle of week 2.i do have to admit tho, i have been lucky. i have read multiple other accounts from patients on sutent that have more and worse side effects than i do. if the nausea, diarrhea, sensitive fingertips, pealing tongue, sensitive mouth, white hair, weight loss, yellow skin, highlighter yellow pee...all of the side effects i am experiencing are the price i have to pay for my "mi...

Cancer - like being naked in public
2007-12-02 03:49:00
an old friend that i pretty much haven't talked to since i was diagnosed wrote me a letter that really struck me. he wanted to "break the ice" again with our friendship, but wasn't sure how. we were the type of friends that could go months without talking, but then hang out like we had just seen each other the day before...like no time had passed. we could confide in one another, laugh together about things that few others (if any) would find amusing, or just shoot the shit over drinks. yes it is possible for a guy and a girl to be friends and thats it.anyhoo, I miss him along with several other people and his letter really got me thinking and evaluating my seemingly instinctual actions. why do i feel so embarrassed about my cancer? why do i feel the need to retreat from my friends vs. embracing their offers of support? rationally speaking, it is completely ridiculous...there is nothing to be ashamed about, nothing to be embarrassed about...i can't help what has happened to me, y...
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FMLA - Not long enough to cure cancer
2007-12-01 23:36:00
my company honors the FMLA...120 days paid leave. after that you have to apply for LTD which is one of our benefits as well...you have to be approved by the company that provides the LTD however. w00t! I was approved today and will start receiving 60% of my current salary at the end of Jan. too bad that my last regular paycheck is in Dec...i won't have a paycheck for approx. 5 weeks. it could be worse, my case was actually approved within 2 weeks for LTD...i was told that it can take 2 months. My company will keep me on disability for 2 years and during that time will continue to keep me on their insurance for the rate i was paying as a regular employee. After the 2 years, i must apply for SS and take over the full payment of my insurance. IM JUST HOPING TO MAKE IT 2 YEARS!!! I hafta admit that the best thing about FMLA is if you go back to work for 3 (or 4 i dont remember) months, the whole thing resets and you can go back on FMLA if you need to (and thus back to your full salary)...
More About: Cancer , Long , Cure

Hospital vacation #2 - thank u sir, may i have another?!
2007-12-01 21:51:00
my first hospital visit lasted 3 days and cost $21k. i felt completely fine for that visit, i was in for all of the tests that lead to my diagnosis...my second hospital visit was not quite as comfortable. this time i was in for 5 days and it cost $20k... the reason for my second visit...well, i had been on sutent for 10 days. i had also been receiving radiation treatments for the spots on my spine for 6 days. on the 7th day, i developed a fever. it was the worst fever i have ever had. over 103° constantly...the fucker wouldn't break. i was taking the maximum dose of fever reducers and they would break the fever for maybe 30 minutes of relief, then it was back to chills and an extreme headache like i have never felt. at one point i had a flanel sheet, a blanket, a down comforter and a thicker winter blanket on me and i was Still shivering...teeth chattering and all. on the 3rd day of the fever we called dr. dooms office and they told me to come in. i actually felt slightly better a...
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Save the Beans...cuz cancer sux.
2007-11-30 18:17:00
i was diagnosed with stage IV kidney cancer aug. 2007. i am 31 years old. WTF?! that is what everyone...including my doctors were thinking. here's how the cancer part all started...one monday in august i woke up with the worst lower back pain i have ever had. it was weird cuz i hadnt had back pain in years.it felt like i had just slept wrong or pinched a nerve...so, i had a big project going on at work and went in monday and tues. just sucking up the pain. on tues, i also had blood in my urine. so, on wed i stayed home, basically in traction...i could barely move by then. i made an appointment with a urologist thinking maybe i had kidney stones. he couldnt fit me in until friday. i went in and they took my blood and my pee and scheduled me for a CT scan for the following tues. my back was still hurting, but seemed to be on the mend. the blood in the urine was gone within 24 hours. on wed afternoon(day after the ct scan) i was running around town prop shopping for a major photoshoot...
More About: Cancer , Beans , Save

Cancer chapter of my life begins...Life on Sutent
2007-11-30 18:16:00
i am on a drug called Sutent which uses the bodies immune system to fight the cancer. since my immune system is so busy fighting the cancer, i can get sick very easily and have to stay away from people who are sick or have been around other people who are sick. basically while i am on these meds, it is like i have aids...my white blood cell count goes down as do my platelets and my hemoglobin. translation...i get sick easily, fatigued quickly and if i cut myself, wont stop bleeding. i have to have my blood checked every 3 weeks to make sure that the levels are okay to continue...the meds have fucked up my thyroid, so they had to put me on thyroid meds.my anxieties are through the roof so i am on a drug 4x a day for that. oh yeah...and my hair is growing in completely gray...lovely side effect. i get nauseous easily, i have the runs all the time. my mouth gets extremely sensitive, my tongue peels, my finger tips get extremely sensitive. i turn yellowish...my pee is highlighter yell...
More About: Life , Cancer , My Life , Chapter