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.