Die, die, die my darling!!!

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 a hour and a half. one every 15 to 20 minutes(if you do them all at once you will puke your guts out). by the time you finish the last one, the first one is already screaming to come out the other end. this is not fun. you dont know whether to put your head in the toilet or your ass on it cuz you dont know which end is going to blow first. by the time i got down to the ct room, i had already puked once and blown out the other end at least 6 times...within an hour. i couldnt make it longer than 10 minutes without needing to be near a bathroom. so, because of this lovely side effect, i am dreading my scan day.

there is a medical reason for the way this dye reacts in your body. it is not good for the digestive dye to sit in your system for very long, so they add the special "trigger" to it so your body will get rid of it as soon as possible. great. bombs away! but, if the scan comes back and shows that i am killing cancer, in the grand scheme of things....it sure as hell is worth a little colon blow to kick cancers arse!!

2 Dollars - I want my 2 DOLLARS!

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.

Dr. Doom DOES Laugh!

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 optimistic tho since the sutent hasa lot of work to do to get to the point where my kidney is operable. so, i am hopeful, but realistically hopeful so that if i receive bad news come Dec. 28th, i will not be completely crushed, it will simply be a minor setback.

on a side note...i have what my family has always called a "Nerve Bump" on my arm. it is an extremely sensitive nerve ending that has grown up from the muscle and forms a bump just under the skin. it looks like a bug bite. i have had it since i was 18. with some light research online, my family believed it to be Reed's Syndrome. my grandmother has some on her arms, my aunt has them all over her arms and back, my mom has a handful on her leg and i have 1 on my arm. my aunt found out that she had a large fibroid tumor. it was benign and she had it removed. my mom also had fibroids years ago...i however, have never had any fibroids. my aunt is in so much pain all the time due to her nerve bumps that she has done a great deal of research online and found some research that linked these bumps to fibroids AND cancer! It is now called HLRCC(Hereditary Leiomyomatosis Renal Cell Carcinoma). we brought this to dr. dooms attention a while back and he looked into it, but determined that based on what the pathologist saw from my original biopsy, they were not related.

Today i tell him that my nerve bump is not only much less sensitive, but it also seems to have reduced in size. he was so excited and interested in this fact, he said "we're going to make you rich and famous!" he left the room and went to get who will hopefully be my surgeon, dr. white to show him this amazing bit of biological material....first thing dr. white said was that he wanted to get a t-shirt like mine, then he said he wanted to biopsy the nerve bump because it was fascinating! they were like giddy school kids...they were so excited by the potential discovery that could be awaiting them if they could just get a piece of me! then a little bit of reality set in and they said they wouldnt do it until my blood work came back. at that point, we decided to schedule the biopsy for a later date...once we got my blood work back and it looked good to proceed.

so, THAT was exciting too! if they find a link between my nerve bump and cancer...i might be famous! i might actually be going through all of this for a reason....to help others in the future...and i might actually get to see and be a part of this medical advancement. today was all positive. absolutely wonderful. I am still keeping my fingers crossed for my scan on the 27th....please be good news!

Sutent - he loves me, he loves me not...

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 "miracle drug" to work...bring it baby. i can take it! i may be a whiny baby for a couple weeks during the full 6 week cycle, but if its working, its worth it. PLEASE let it be working! December 27th...the date of my next scan to see if there has been any change...please, please, please be working.

Cancer - like being naked in public

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, yet i continue to retreat from all but a select few. emotionally, however, it is more complicated. is it that i miss the life that i once had and being around these people will remind me of that? is it that i fear i won't be able to handle facing that right now? I rarely let people see me cry...maybe it is the fear that i will cry in front of them and won't be able to stop. but why the fuck should i care about these things?! they are so pointless to stress over. change is necessary and the only thing that is a sure thing in this world. am i strong enough to roll with punches and adjust? i like to think i am...but maybe it is that doubt, that fear that i can't "roll with the punches" and not wanting to "fail" in the eyes of all of those close to me.

if you can't tell by now, i am a perfectionist. i am also an obsessive over-thinker. both of these things i am working on changing about myself. i do know that accepting that you will never be perfect is the first step to happiness and not sweating the small stuff is also key. knowing what you need to do and actually doing are 2 completely different things.

i have finally learned that small steps are better than none at all and i am slowly coming out of my shell again. i've already sent my friend an email. :)

UPDATE: 12/3/07
Another friend so kindly pointed out that it is probably the fear of rejection. why didnt i think of that?! "they accepted the healthy 'me', will they accept the cancer 'me'?" the cancer me doesnt do the same things the healthy me did...i don't go out for drinks after work, i go to bed early...i basically live like i am 95 and i am only 31. a big day is going to the grocery store AND putting up xmas decorations. w00t! w00t! will they accept all of these changes in me or will we drift apart? Damn...he hit the nail on the head...
the answer to these questions is yes, they will accept me if they really are my friends and truly care...if they aren't and don't....then they can fuck off! enough said.

FMLA - Not long enough to cure cancer

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). so, although 4 months is not long enough to cure cancer, if you have a supportive boss and company, there is no reason why you can't work something out so the system actually works in your favor for once. i have yet to be stable enough to be able to commit to work for several DAYS let alone several months, but each day as i get stronger and more stable, i hope to be able to work something out.

Hospital vacation #2 - thank u sir, may i have another?!

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 and was able to get to the office and wait. they admitted me to the outpatient infusion center, treated me for dehydration and took blood and pee for tests. while i was receiving fluids, my fever came back...my temp was up to 102° again. they gave me some tylenol and after my fluids were done, they sent me home with a Rx for an wide range antibiotic. that was on a monday, by wed., i was no better and so tired and weak from the fever over 4 or 5 days, we called again and they told us to come back in. i was so miserable...i was begging for help...something...knock me out PLEASE! once i got to the dr.s office, they took one look at me and said "omg, we are admitting you to the hospital right away". their offices are connected to the hospital by sky bridges, so they called immediately for a transport and as my wheelchair and driver arrived, my fever started to break again...it broke so hard i was sweating profusely and in such a daze that i almost passed out.

once in the hospital, they started me on fluids again...while i was there i had 4 bags of potassium, 2 bags of magnesium, 1 bag of sodium and 5 bags of regular fluids. i had another ct scan with both IV and oral dye. THAT was awful. My pee turned burgundy-ish red...this was due to my liver reacting to the antibiotic. (apparently your liver controls the color of your pee by releasing different enzymes...when you piss it off, it turns burgundy-ish red...who knew?) after all that, they couldn't determine what was causing the fever...there were no infections, no cold, no flu, nothing. they finally concluded that it was "tumor fever"...triggered by the combination of sutent and radiation. my body just couldnt take it.

they started me on indocin...a drug that controls your temperature so that even if your body wants to have a fever to fight against something, its natural defense, indocin will keep your temperature at a normal level. (this sucks btw... i just felt wrong the whole time i was on that stuff...unfun!)

by the time i was released from the hospital on the 5th day, i had gained 30lbs of edema....try to imagine that...in 5 days you are carrying around an extra 30lbs. it was painful, caused intense pressure and discomfort and put major stress on my spine. i was so weak when i got home that i could barely go up the stairs. i had lost almost all of my stamina in less than a week. how the fuck can you "stay positive" with that shit happening to you!!

it took me over 2 weeks to get all of the 30lbs of edema off. i finished the last 7 days of my radiation plan and the week after that i was on sutent again. at this point i was taking 15 pills a day...1 to protect my stomach from all of the pills, 1 for my thyroid that was now "off" due to the sutent, 4 for anxiety, 3 for fever control, 5 for pain management and the golden 1, sutent. I hate drugs. i am EXTREMELY sensitive to medication...before all this, i couldnt even take regular cold medicine, i had to take children's cold medicine cuz adult medicine made me feel weird and worse than if i hadn't taken anything.

now i am extremely paranoid about being around people who may be sick or may have been around others who are sick. especially since it is flu and cold season. if i get sick, my body won't be able to handle it and it will be another fun-filled trip to hell for the bargain basement price of $20k.

whats so scary is as bad as this experience was, i know it will get worse...i know that it is not over... i know that pain, my worst fear since childhood, is my reality now.

Save the Beans...cuz cancer sux.

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 i had on thurs. i called the dr.'s office to give them my cell number and to find out when i would get word on my scan. the nurse told me that the dr wanted to see me as soon as possible, like friday. i told her i couldnt thurs. or friday, that it would have to be today(wed) she said he would fit me in at the end of his appointments.

now, let me tell you, my dad was out of the country for a 3 week vacation, they had left on tues. my mom lives 8hrs away and my husband was in boston on a business trip. i get to the drs office at 4....by 5:30 i am actually talking to the dr and going over my scan.
he shows me some garbley goop on the screen that looks like an ultrasound picture where you can't see shit...
anyhoo, he shows me this grapefruit sized thing on one side of the screen and tells me that he is pointing to a cyst on the top of my left kidney. im thinking "ok...cyst, those are usually not that dangerous". then he scrolls down and shows me what he calls "normal kidney tissue"....im thinking..."still ok." then he scrolls down to what is the bottom 1/2 to 1/3 of my left kidney and tells me that what i am seeing is abnormal tissue.

aka...cancerous.

he shows me the kidney on the other side and explains how that is what the left one should look like....but he's not done.
he then shows me another grapefruit sized cyst that is my left ovary. my obgyn oncologist thinks that it is just cystic in nature and poses no threat. he said that is the least of my worries. (i found that out later)

back to the urologist visit...
he asks me if i have anyone living with me...if i have anyone here. he apologizes for not offering me tissues because i am crying by now as all of this is hitting me...he is visibly frazzled that my case is so serious, but at the time i didnt realize that was why he was frazzled. he wanted to admit me to the hospital immediately...i tell him that i cant, i have a dog and i have a major project at work that i have to hand the details over to someone for a photoshoot the next day. he says fine, that i am to be admitted first thing in the morning.

by the time i get out of there, i am completely in shock...first i call my boss to tell her what is going on...she knew i had a drs app. and that something was wrong.
i get about 3 words out before everything i was telling her was through tears and she could barely understand a word i was saying. i finally manage to tell her what is going on and that i need to hand all this crap over to her to take over the project i had been working on.

after a rough and sleepless night, i head to the hospital with my husband who came back from his business trip. once i was in the hospital, they gave me another abdominal CT scan, a chest CT scan, a full body bone scan and a head and full spine MRI. my head is clear, my chest is clear, there are 4 spots on my spine which is why my back hurt, but the rest of the bones in my body are clear. apparently, the cancer spread from the bottom of the kidney over to the lower spine and caused the spots there. the cancer is putting pressure on my spinal cord and compromising the structural integrity of my spine. they were very freaked out about that. they barely let me move around until all of the neurologists had looked at all of the bone scans and mri.

while in the hospital, i still dont quite know what is going on. i know that it is serious, but i dont realize how serious. im thinking immediate surgery or something like that. at one point, i had 6 different specialists working on me. spine guys, neurologists, urologists, renal oncologists and obgyn oncologists.

then, Dr. Doom (as i lovingly knicknamed him within 2 minutes of meeting him) comes in the room with a nurse.

Dr. Doom starts going into the statistics of my condition and how only 10% of us present my symptoms and out of that 10% there is only a 30% 5 year survival rate. all this heavy, heavy shit that i am not fully comprehending and there is nobody with me. i just keep nodding my head thinking "someone is coming, someone will come and rescue me, someone will help me...."

...and then my mom walks in. i tell Dr. Doom that he is going to have to explain everything all over again to her because i dont think that i got it all. he totally changes his tune and says...well, we are going to come up with a plan once we get all of the tests results in...and then boom, he was outta there.
i felt like i was totally ambushed...

after i got out of the hospital, i had an appointment the following monday with a second urologist that specialized in kidney disease. i go to the appointment with the second urologist...and this time i have a full entourage with me. we are all piled into a room and the dr is going over my scans on the screen with them...he is the surgical specialist also and this is when he drops the bomb that the kidney is currently inoperable....due to the fact that the cancer has also spread to lymph nodes around the kidney and around my aorta and has basically created a concrete barrier surrounding the aorta and he cant get to it to cut off the vein and get the kidney out. so....this is when he officially refers me to Dr Doom (whom i had already seen when i was in the hospital) for immunotherapy treatment.

so, my dr doom doesnt smile very much. he is a specialist in immunotherapy and one of only 20 drs in the US authorized to prescribe my meds...he's uber smart and to the point, but i keep trying to make him laugh cuz, well, cuz that's how i am. thats how i deal with stress. he asked me if i had been exposed to a bunch of chemicals and i said "only if you count being born in West Virginia." I actually got a smile for that one! (he is actually very nice and very good at what he does...he is just very to the point and doesnt pussyfoot around. i like it now...what i see is what i get...)

Cancer chapter of my life begins...Life on Sutent

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 yellow...all from the Sutent. while it is making my immune system fight, it is also slowing the production of cells in my body. since cancer cells grow faster than normal cells...they also die faster when they are denied the nutrients necessary to grow. because of this, in 30% of the cases taking Sutent, they have actually reduced the size and amount of cancer in their bodies.

so, my fingers are crossed that this "miracle drug" gives me my miracle. i am hopeful that my body is strong enough to fight this, i am hopeful that i will live to see next christmas.