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.