A week in medical hell

this is not going to be written in my usual humorous and sarcastic tone because i have actually reached the end of my rope this week and need some serious calm down time. so, please don't worry that i am "giving up", i just reached a very low point and need some time to come back.

ok, so the transfusion didn't really seem to do much for me that i could tell. i was also so swollen from both edema and fluid build up that i just could not take the pain anymore. i called my dr. on tues. and they asked me to come in wed morning to be looked at and that they were going to go ahead and schedule me to be drained. by now i was so incredibly uncomfortable that i couldn't help but cry out of pain and frustration every night....night is when it was the worst.

so, i go in and see the dr. for just a few minutes...he agrees i need to be drained but also decides that he wants to move up my CT scan which wasn't scheduled for another month because he want to see what's going on in there. so, i have my paracentesis wed. morning after the dr. appt and then i have to go over to drink the nasty smoothie stuff in order to have a CT Scan done that same afternoon. i haven't eaten all day and now that the ct is scheduled, i can't grab a snack at lunch because i can't eat before the scan. luckily, the drain goes just fine....they take off 3 liters...wish they would have taken off more, but i can't go against dr.'s orders. done with the drain, we go back to the waiting room(it happens to be the same one for the CT scan at this location) and they ask me what flavor i want to drink. I ask for berry, but they are out so i have to go for the banana smoothie that is warm. yuck. luckily they brought me some ice to cool it down and i manage to drink it down in the time allotted. it is so freaking cold in the waiting room and i am drinking iced smoothie that now i am a popsicle and have 3 blankets on and my winter coat. by the time they come and get me for the CT, i have still not warmed up, in fact i am just as cold as when they started trying to warm me up. now they have to try to get an IV in me for the IV contrast dye for the CT. uh-oh. its cold, im cold, ive been drinking a cold drink and now my veins have run away to hide from the evil blood suckers because they will not soon forget the week of vampire misfires. so, while im sitting on the CT bed, the two....i'll call them techs for lack of a better name. if i called them what i really wanted, i would offend several people im sure. one of the reasons i have taken so long to write this post is that i had to cool down....every other word was a 4 letter one when initially discussing the story i am about to relay. ok, so while im sitting on the CT bed the 2 techs realize after a few minutes that i am going to be hard to get an IV in. i warned them that there are only a couple good places to get me, but even those places have been blown before and to top it all off, my veins are rollers. they immediately move me to a room off the CT room that has a recliner chair in it. they sit me down in the chair and put blankets on me and proceed to beat my arms in different places trying to get my veins to come out and play. the blond tech thinks she has something, so she goes for it. nope. stick 1. she thinks she sees something else. she goes for it. nope. stick 2. the brunette thinks she sees something on the other arm that the blond "will really like". she moves over and goes for it. nope. stick 3. she tries one more time. nope. stick 4. at this point they decide to go get a nurse. now that i have been stuck 4 times and my arms smacked around and beaten and needles digging and fishing, the GD MFing TECHS are going to go get a nurse....AFTER i warned them i was hard...AFTER i warned them that my veins rolled and had been through a lot over the past couple weeks. yeah, i had a few choice names for these ladies at this point, but was in so much pain and so nervous about how many other pokes i was going to endure before an IV actually got in, i held my tongue.
in walks the nurse...the techs are nowhere to be found. i think i scared them off. the nurse starts looking, i show here where they have already poked around, i point out where the best places are to get me, i point out where i have had a recent IV. she starts beating my arms having me make fists, hang down my arms, beat them some more. she finds a spot she is willing to try, she goes for it. nope. stick 5...and she digs around a bit cuz she can't believe she didn't get it. she moves to the other arm and finds another spot she's willing to try, she goes for it. nope. stick 6. she digs around in here for while again until tears are pouring down my cheeks. she gives up and says she is going to get her supervisor.
now, in walks the supervisor...drills me with the same questions. do i have one arm that's easier than the other? etc. i tell her all the same stuff...of course none of these people ever freaking listen! after beating and squeezing me all over again, she goes for a spot just above where the last lady had tried. she got it for a second, but then she blows the vein. ARE YOU FREAKING KIDDING ME?!! THIS HAS GOT TO BE A JOKE....THIS MUST BE SOME JOKE TV SHOW OR SOMETHING. THERE IS NO WAY THIS MANY PEOPLE ARE THIS INCOMPETENT!!!
nope. stick 7. then she finds another place that is again, just about where the other chick tried. she goes for it and fishes until she gets it. my arm is killing me at this point, but its in...finally. now, the nurses are chit chatting about how i don't look like im going to be that hard to get and that my veins just decide to run and hide as soon as they stick me...blah, blah blah. i want to stab them all in the eye as they talk about the pain they have just caused me like its nothing. after 45 minutes of searching and poking, i am finally ready for my 5minute CT scan. scan done...let's go home before i kill someone due to my tortured state of mind. i have a 9am appt with my dr. to go over the scan the next morning and discuss any changes and next steps.

8ish am the next day. my dad and my stepmom pick me up and we head to the 9am appt. as we look over the scan from the day before and compare it to a scan from a year ago, he determines that there is no measurable change in the size of the cancer...which is great news since this type of cancer is fast growing. he can also see that there are still several liters of fluid in my belly as well as fluid in between my left lung and the sack that holds the lung that is putting enough pressure on the lung to decrease its capacity by 50%. although i can't really feel it...i don't have any trouble breathing, i do have pain in that area that is the pressure being put on the lung. so, my dr. orders a different kind of paracentesis...one where the needle goes into the area between the outer sack and the lung and drains the fluid....they go in in between the ribs. OMG....hearing this i got a little freaked out. they also order an echo cardiogram to check my heart because they didn't have one on record and before starting back on my meds, they wanted to have a good look at everything to be sure we were good to go. we head right over to have my lung drained. in order to do this they sit you on the bed and have you lean over a raised table to be as still as possible...they don't want to go puncturing your lung! the initial numbing and stick is actually less painful than when they drain my belly, but it only gets worse from there. as the fluid drains out, you would think that you would start to feel relief...oddly enough, it is the exact opposite. it starts to hurt, really bad, your lung starts to spasm slightly and contract to the point where it feels like you can't breath. you have to cough a lot and if you try to take anything other than shallow breathes, you are smacked with a wave of intense pain. you also feel chest pain and you start to get phlegm in your throat along with the strong urge to cough...which they tell you is fine...cough all you need. coughing, however hurts. anything that causes your diaphragm to shift and push on the lung hurts, so hiccuping, burping, laughing, coughing, sneezing...OMG sneezing. i avoided sneezing a much as i could until finally i had to let it go. i screamed bloody murder when i did finally sneeze. so incredibly painful. well, all of these side effects were only supposed to last for an hour or so....LIES! more LIES! my lung was killing me for close to 2 days...although it did feel a little better each day, it was still extremely painful to sneeze or burp or use my left arm....i hope that i don't have to do that again for a very long time.

immediately after i had my lung drained, i had to go for an x-ray to make sure that my lung was filling back up with air like normal vs. collapsing for some random reason. so, we head down to x-ray and have that done. it is difficult to move in general because every time you move, you shift your insides and my insides were in no mood to be shifted at that point. they wanted to be left alone. anyhoo, the x-ray looks fine so then we head over to the heart specialist to get my echo. this should have been the easiest test all day, and it would have been if it weren't for the fact that i had just had fluid sucked out of my lung and my insides were in shock and moving even fractions of an inch was extremely painful. i laid down for the start of the echo and the tech asks me if i would be able to roll to my left side....i look at my dad in horror and tell the tech "no freaking way dude". i explain to him what i had just been through less than 30 minutes before and that getting down in the position i was in was about all i could manage at this point. he says ok and that he will work with it and try to get everything he needs without moving me. then he asks me to take a deep breath....ummm, did he not just hear what i explained i had done to me? no, you will get no deep breath out of me unless you would like for me to scream bloody murder in you quiet little room and freak out the rest of the patients in the waiting room. he got the deepest breath i could muster and that was that.

20 minutes later, my heart looks perfectly fine and we are on our way home.

now, a brief...well brief about the fluid and what's going on there. when fluid builds up in your body, it is actually your bodies way of trying to heal itself, but when it ends up in random places, it is just confused. this fluid is full of nutrients and albumin or protein. every time i have it drained, my body thinks that something is missing and through a form of osmosis, it is trying to "equalize" what is missing and the fluid fills back up again. SOOOO, now i am on a super high protein diet, the more protein i can get the better to try and help with this phenomenon. protein also helps with the edema as well as walking. the latter i have not been able to do much of however due to the fact that i either pulled or tore my core/ab muscles in a couple of places and could barely move. it is absolutely amazing how often you use your core muscles. you can't move without using them in some way.

last bit of the story. my scan showed that there was still some fluid in the belly that could be taken off. so, i called my dr. on monday to check in and told the immunotherapy coordinator that i wanted to be drained, to get the rest of the fluid off of my belly to ease the pressure and aid in the healing of my core muscles. i was also put on morphine(which i was put on once before for extreme soreness in the abdomen.) i went in on tues and they took 3 more liters out....i was already on morphine at this point a happy camper. i was all giggly and chatty and talked in my sleep like a kid all night long. my boyfriend said it was so funny and that i was acting like i was drunk. ha! morphine is my best friend right now. the only relief i have had in weeks.

so, now i am healing and taking it easy and my pain is under control and the edema is going down and soon i will start walking to help it go down more so that i can start back on my meds in the next couple of days. i am writing this blog entry while im high on morphine. so, i apologize ahead of time for things that don't read right or misspelled words or any confusion you may have. it all makes sense to me right now! ha! also, even tho this entry is long as hell, im sure i missed something because there were a lot of details to deal with last week. especially in my appts. with dr. doom. so, i wouldn't be surprised if there is an "update" soon.

aight peeps....im outie 5 to chill in my happy little morphine-ness. holla!