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...)
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