Monday, April 4, 2011

Stroke ward fun or I must really like hospital food

Ok so if you follow me on Facebook you already know how this ends, so if you're reading it anyway, I love you to pieces! And if you're not, I love you pieces! :) So a little over a week ago, Monday March 28, my parents, Sophia and I took a trip to Ikea. Sophia's toys have apparently multiplied and vomited all over my living room so I'm looking for a piece of furniture to hide them all in cause I'm tired of staring at them. There's thousands of them, I really don't know how it all happened, but I suspect it's the grandparents' doing. So we see a piece that I like but then I realize that I didn't measure the width of my wall so I don't know for sure if it will fit and when we get to the self-serve area it's clear this piece weighs 900 lbs (it's so odd how heavy some of their stuff is) so I decide it's prudent to go home and measure before anyone in my life throws their back out with this thing. So on the way home I am trying to ask my mother if Adam, my brother, is planning a trip to Ikea soon so I can return with him and John so we have help lifting it. But for some reason I can't quite get the words out. I don't think anything of it, because when have any of us not had a moment when we just couldn't get the words out. But had I been paying attention I would have noticed something different about this moment. I knew what I wanted to say, I just couldn't quite get my lips to say it, but I eventually squeaked it out. Then a few hours later I am eating dinner in front of the TV and next to my laptop, which is on a tv tray. I am eating meatloaf and I keep dropping my fork off of the plate every time I hold the plate in my left hand. Again doesn't seem like something that has never happened before so I ignore it. And then I accidentally kick the AC adapter out of my laptop with my foot (something I do 20 times a day) and I pick up the cord with my left hand and no matter how hard I try I can not for the life of me plug it back in. I am really frustrated and John asks, what's wrong and I'm like, I'm such a spaz I can't plug it in with my left hand and then before John can help me the cord slips out of my hand and I realize I did not let got of it, and it suddenly dawns on me that my left hand is not doing what I'm telling it to do. So I say, "John put that cord in my hand, I don't think I can feel it." I also suddenly have this bizarre sensation that someone is tickling my left hand just under my ring finger. My mom suggests that maybe I am having a nerve issue because I mentioned my back was hurting earlier in the day, but John and I are suspecting this is something more serious. John calls the Oncologist on call and while we wait for the return call I decide to test my brain and start typing my name. I can't do it, but I genuinely don't know if it's because my left fingers aren't working well or if I just can't spell it. But I am unable to type it at all. And when I try to verbally spell my name I keep adding extra C's and Z's, so I'm a little freaked out. The onc on call says, well I don't want to scare you but this is a sudden neurological symptom, you have to get it checked out. He wants me to go to Sloan but that's an hour away and I'm not sure it's worth the risk of travel time. So I ask him, "when you say checked out what do you mean, cause I think I should go to the ER here." "You need at least a head CT." So John and I jump in the car and agree that the closer the better, just in case I'm about to have a stroke. Stroke is all about the time it takes to get you there, in fact the neurological nurses all said the same thing, if you think you're having a stroke don't jump in the car, call 911, stroke is about time, you need treatment STAT! On the way over I notice I can't grasp anything in my left fingers at all. But if I bite down on them I can feel my teeth, however no matter how hard I bite, it doesn't hurt. I also notice that my fingers occasionally move on their own which is crazy creepy! So we head to the ER at SIUH, I'm not thrilled but I know they'll take this seriously and they do. I got into the ER faster than I ever have (and I've gone with chest pains, that turned out to be acid reflux.) They took me to trauma and I was officially a stroke code. For like 3 minutes. But it's a scary 3 minutes. I am stumbling on so many words I feel like my mouth is now failing me. But then the doc asks me to close my eyes. And she says the scariest thing I've ever heard, "you can't feel that honey?" "Feel what?" She was stroking my left forearm with her finger. But I felt her stroke my right arm and then she returned to my left arm and I totally felt it. Now my eyes are still closed and I have to tell her where she's touching me. So she might have hit me too gently the first time, but I was scared until I felt her touching me. But ultimately, I failed all of their stroke tests and I heard the doctor say I scored a zero, if there was ever a test to fail folks, it's this one. So I'm no longer a stroke code, but clearly something serious is happening so I get that head CT. And within an hour the doctor comes in and says, "ok the blood thinners you're on for the blood clot in your heart has caused one of your brain mets (brain mets is oncologists' slang for brain metastases, the cancer cells that spread to the brain) on the right has started to bleed. First we stop the blood thinner next we give you steroids to bring down the swelling." So I get a big fat shot of dexamethasone (the same steroid I take every day only a much larger dose), within an hour my hand is back to normal, I can spell my name and I stop stumbling on my words. I ask the doc, who I like she's very to the point, knows what she's doing, "how worried should I be about this?" "Well it's a tiny bleed and I felt ok checking on another patient before I checked on you. So it's not great to have your brain bleeding, but it's really, really tiny." So I am feeling a bit more relaxed. Unfortunately there's the other big problem, I have a blood clot in my heart and now I can't be protected by any blood thinner. So the risks are spelt out for me, the clot can grow bigger, I can develop another clot, and there's always been the risk that it can travel and cause a Pulmonary Embolism or a stroke, but that last part isn't news, I knew that from my hospital stay at Sloan. But the medicine that I was using to at least partially help me with the clot is now off the table and that's a teensy bit nerve wracking. So I get sent to ICU. The nurses there are amazing, they must see hell on earth up there so they are like chemo nurses, their own breed. They are all lovely and they have to constantly check my brain. So they shine a flash light in my eyes every hour, ask me who I am and do I know where I am. When the doc forgets to order me breakfast (don't get me started on my attending, what am I talking about I'm blogging just so I can bitch about her!) my nurse Cheryl, who I have tending to me for 2 days, literally steals me food. She is the coolest and every time I try to pick something up off the floor or help her in any way, she puts her hand on me and says "Jaime, please do me a favor while you are here, be selfish. I need you to put yourself before everything." I thought that was sweet but then when I was up in the stroke ward later I realized that it was also for my and her safety. If I bend down and pass out, who is going to pick up all 200 lbs to me, to say nothing of how I could hurt myself. But that actually happened to a poor nurse in the stroke ward. A woman who could not move by herself, insisted on moving despite being instructed not to, she fell and he threw himself under her to keep her from getting hurt and he ended up in the ER. I felt awful for him! But here's my big problem. While neurology is being great and monitoring my brain well and keeping me completely up to date about the brain bleed, which is totally stable, they are also telling me that I need to see cardiology and vascular, because they might have an opinion about how to bust the clot. I'm not thrilled at this idea but I'm willing to meet with them. And my oncologist has been consulted and his opinion is, if her brain is stable send her home. He thinks going after the clot is too dangerous. But SIUH decides that they are going to MacGuyver this fucking thing. BUT my attending, Dr. Hidalgo who I've yet to meet, who apparently got her medical degree from a cracker jack box, decides that she doesn't need to ask cardiology for a consult, since the blood clot is in my heart why on earth would I need to see a heart doctor. Unless of course she figured cardioligists are only qualified to consult on Hallmark related injuries... So they are never called (I don't know this until Thurs, I just think that cardiology is ignoring me). But she calls in vascular who is very confused as to why they are consulted, but they are totally cool. Now there are two tests I have to take on Tues. A new head CT to confirm the brain bleed has stopped, which it has so neurology declares me stable. AND I need to have an echo cardiogram to get a status update on the infamous blood clot. I'm told ehco cardiogram will come up to me, I don't know why since I am perfectly able to travel and was brought down to radiology for the CT scan, but that's what I'm told. They never come. So I have to spend another night in the hospital waiting for a 20 minute test. I'm pissed and because I'm stable I get sent to the stroke ward. I'm like great, that should be as depressing as ICU. Boy was I wrong. But I'll get to that later. Let me totally bitch for while more, cause I was in the hospital for days longer than I needed to be. Oh and before I forget we mention to the nurse that I still haven't had my echo yet, was it ordered. And she said yes it was but they don't like to come up to ICU because people are too sick. I hope medical insurance companies don't find out about this department, they might hire them all as adjusters. The next morning, Wednesday, I finally meet Dr. Hidalgo who doesn't think I need the echo cardiogram after all. But why am I meeting with vascular and cardiology without a test to show the status of the clot. And why am I still in the hospital, the whole reason I'm stuck here is waiting for the echo. And she says "well I certainly won't stand in the way of an echo" WTF does that even mean? Then she disappears and comes back to say not only will I get the echo but now she's ordered a brain MRI for the following morning. She's done this just to piss me off, but whatever. So I finally get taken to echo, which is just a sonogram of the heart. At the end the technician says to me, "why are you here?" and I tell her "well I have a blood clot in one of the top chambers of my heart" and she says "well I don't see it and I got a great shot. Now I caution you I'm not the final word on this, the cardiologist might want more testing, but I got a clear picture and there's nothing there." I'm flabbergasted. I've spent the last 2 1/2 days freaking out about not being protected with anticoagulants and the clot is gone. In two weeks, how is that even possible? So I decide to not do cartwheels until a doctor, preferably a cardiologist, tells me that it's gone. So then I meet the first of 4 vascular surgeons, why 4 I don't know, but I like all 4 of them so it's cool. He's a young doc and he has no idea why he was consulted. So I tell him about the clot and the brain mets and such. So he says that Vascular's position would be to leave the clot alone, let my body dissolve it on it's own, it's safer in their opinion. Great I can live with that. So I tell him the technician saw nothing and he says "well then there's probably nothing". Now what I like about this guy is, even though he's only there to consult on what we are beginning to believe is a non-existent clot, he decides to do a complete vascular check for me while he's there. And he tells me I have beautiful circulation and I'm confident he wasn't hitting on me. And he high fives me and leaves. Nothing else happens so this is becoming a huge test of my patients. Now, Thurs., the official report from the echo still isn't back and then 3 vascular surgeons come to meet with me. Since there's no report they talk as if the clot is still there, but they confirm that vascular's position is to do nothing. They are friendly, informative and then they ask if they can stay for a minute and watch me play fruit ninja because they have never seen it before and they walked in mid-game and were mesmerized. So I literally play a round for them to watch. It was rather funny.

Then I head to my brain MRI, what is so funny to me is that every MRI tech never believes that this isn't my first MRI. And in this case it was my 3rd brain MRI. But he's sweet and has a lovely smile. Brain MRI really is easy, your head is immobilized but you don't feel trapped and it's only about 30 min. Plus you're only in to your neck or your chest depending on the machine. Trust me there are WAY worse MRIs out there.

So after a few hours the neurological surgeons come to give me the results. There are three of them, lead by the lovely Dr. Chang. Dr. Chang does all the talking and he sweetly approaches me and asks why I had the brain MRI. So I tell him that the blood thinners I was on made one of the brain mets on the right side of my brain bleed so the MRI was to just confirm that the bleeding was under control. And I see the three surgeons relax and I realize that they weren't sure if they were about to tell me my cancer had spread to my brain so they were bracing themselves for giving me bad news. I find this incredibly endearing, it meant they were concerned and the gentle way they approached me meant they actually cared how they were going to tell me. Of course now that they know I was completely informed they want to talk about treatment. They were happy to tell me that while it wasn't great that I have so many mets (I'm pretty sure I have 7 but I've never asked anyone to confirm, cause quite frankly it's an answer I don't really want to revisit), the mets are tiny and if I have radiation in my future it will work better than if they were larger. They are so positive AND they keep repeating the word tiny, so I love these guys. And when they leave Dr. Chang genuinely wishes me well and touches my shoulder. I don't know why this touched me so much, but it really did.

But we still haven't met with cardiology and no one is giving me the results of this echo. And then this gorgeous young doc walks in, DR. Ahmed, whom I've never met, and tells me that she's covering for Dr. Hildalgo. She starts talking about the clot over and over and we say "well we were told it's not there anymore" and she very arrogantly tells us "oh it's still there and we can't let you go home until you see cardiology because if we release you, you can have a stroke and die tomorrow" and now we are confused. "Why would the technician say it wasn't there" and she says "well the cardiologist reviewed it and he says there's an 'artifact' there and it's pretty safe to assume the artifact is the clot." Everyone is deflated, but I'm furious. And my parents are like, Jaime you need to get angry and truth is I'm beyond mad. I want a cardiologist to explain to me why a technician and a Vascular surgeon could fuck up this much and why cardiology can't be bothered to see me in 4 days. So Dr. Ahmed gets us a copy of the echo and underlines the part about the 'artifact' as if to say "see I told you!" So the nursing administrator, Joan, comes in, now I'm not mad at any of the nurses so I don't want to scream at her, but WTF is going on. So she checks my chart and is shocked to discover cardiology wasn't ordered until about 5 minutes before Dr. Ahmed walked in to see me, she was the first person to think, gee maybe this girl with the cardiac problem should see the cardiac people. So I tell her honestly, I can't take it anymore, Sloan wants to know why I'm still here, vascular tells me it's safer to leave the clot alone and then the attending tells me I can die if I go home. One minute I'm being put at ease the next someone is scaring the shit out of me. And Joan says, "I totally understand" and then she and a young intern named Dr. Kogut work like hell to find me a cardiologist. In fact Dr. Kogut apologizes to me because she's concerned that she gave me the impression that she had called cardiology. I think it's lovely she does this, but I assure her that I was told in ICU days earlier that I was to see cardiology, 2 days before I even met her. But I know she will be a great doctor one day and I adore her. They work like hell and track down a Cardiac Fellow who says he'll come as soon as he can. He shows up about an hour later, lovely, embarrassed about the situation and starts to talk about the clot. Now here's the important thing. My blood clot was at the base of the tube from the mediport that leads into the heart, and it leads into the right chamber. We know this for a fact because I took a Cardiac MRI at Sloan two weeks earlier that showed the exact placement of it. So as we talk to the fellow about the clot we tell him that it's at the base of the tube. And he says, "no the new echo shows it's in the left chamber and the mediport deposits into the right." And I say "oh no, Sloan was very clear, it's at the base of the tube and the heart MRI report is in my file". The cardiac fellow goes running to my chart cause he's confused by what he was told by Dr. Ahmed and what he's hearing from us. While he's reading my chart, Dr. Kogut looks at me and John and says, ok we must be reading our echo wrong and John says, "no I have the new echo with the 'artifact' line so neatly underlined by Dr. Ahmed, says the artifact is in the left chamber" and she grabs the paper and runs. And all of a sudden it becomes clear, the clot is gone, but no one has compared the new echo to my heart MRI from Sloan. Then the cardiologist returns and says, "well normally it takes 4 to 6 weeks to dissolve a clot, you did it in 2!" We are all thrilled and I don't care how long they keep me, my clot is gone! The cardiologist wants to do a couple of more minor cardiac tests because my cholesterol and triglycerides are high. I'm ok with staying another night because I finally got the answers I want and the fellow is great, honest, apologetic even though he did nothing wrong and I appreciate that he wants to check me out. And had I met with him on Tues. like I should have he would have done this then. Plus I'm totally digging the stroke ward, the nurses there rock and I am trying desperately to beat 500 in fruit ninja. Any way to review, you see the blood clot was in the right chamber, so when the technician said it was gone she was right, it was. But the cardiologist who reviewed the report found an "artifact in my left chamber", which he dutifully reported because that's his job. Now turns out Sloan found that left chamber artifact too and both confirmed that the artifact was just a thickened wall in the left ventricle. A fact that I was likely born with but is not anything to worry about. But the clot in the right chamber is officially dissolved. Turns out Dr. Ahmed and Dr. Hildalgo can't tell the difference between left and right OR they never read the MRI from Sloan, not sure which because Dr. Ahmed never showed her face again and Dr. Hildalgo acted like she knew all along the clot was gone, which is apparently why she kept me 2 days longer than I needed to be there. They just read that the echo showed an artifact and assumed it was the clot. Nice. But at the end of the day the mistake only cost me two nights in the hospital longer than I needed to be. I got great care and no actual harm was done. But I was annoyed and most annoyed that it took my husband to figure it out the mistake because two doctors couldn't read. Now to my friends who are doctors listen, I love you guys. You have an incredibly difficult job and you went through an incredible amount of schooling to be who you are. I am envious of all the knowledge you have and you have chosen a profession where you save lives. You rock. Please understand that I'm just bitching about these two doofuses who need to spend less time doing their hair and more time paying attention. They are just two bad apples and all professions have them, so I don't mean to imply anything about all docs. I loved every specialist I met, they were all wonderful, thorough and sweet. I even liked the medical students I met who asked if they could talk to me about the cancer because they wanted to be oncologists and were writing a paper on me. They were kind, considerate and genuinely inquisitive. But they were also upbeat which I liked. They weren't focused on the stage 4 cancer, they were focused on my age and what I was doing to fight. I have high hopes for them. So about the stroke ward, all stroke wards should be this much fun. There were four of us. Me who had a minor cranial bleed but still serious enough that I needed to be monitored but not enough to take up a bed in the ICU. There's a 40 something woman who had a stoke in her mid-20's and is now plagued with cluster headaches so bad that they cause the same stroke symptoms and she loses feeling on one side of her body and can't speak. But she is ok now but her head is killing her. I feel awful for her, but she's coping and very friendly. There's a 70 something gentleman who did have a stroke, his second in 5 years. He has lost some feeling in his face so eating is not 100% and has some minor speech issues, but he's overcome it all before and I just believe he will again. He's got a lovely family and he's all smiles. And then there's Olympia. Olympia is 93 years old. She had to have all the teeth on the bottom left of her mouth removed because of a terrible infection. Because of the pain in her mouth she wasn't eating much and that, combined with her water pill, caused her sodium to drop so low that while she was at her senior citizen center, she lost her ability to speak. Fortunately, she did not have a stroke and her recovery was going well as they hydrated her and replaced her electrolytes. Now Olympia was a fucking riot. She bugged the nurses constantly but always meant well. She wanted to know why our night nurse Angela wasn't married. She's gorgeous, lovely and hard working. Angela explains she doesn't want to be married just yet, she hasn't met the one. So Olympia decides to consult the head of the nurses on the floor, the nurses aids, the transporters, the phlebotinists, as to why Angela is single and does anyone know a nice boy or girl for her. It might sound annoying but it was so much fun and Angela was genuinely laughing. But the best was at night after all of our families were thrown out. The cluster headache lady was transferred out because they need the stroke beds so once you are off monitors, you are transferred. She's lovely and wishes us all well, and we do the same. The older man is sleeping. And I'm on my iPad which infuriates Olympia because as she says "You could talk to us you know!" Which I do eventually but I wasn't being unfriendly I was just obssessed with Fruit Ninja and for the record with a bleed brain I kicked my husband's high score! Well Angela then tells Olmpia as she's giving her her night meds that boys today aren't great to date. And Olympia says "I know, it's not like in my day when boys were looking for a wife, today all boys want is SEX, SEX, SEX!" Well the old man, who we thought was sleeping, loses it and starts laughing out loud!!! And I'm now dying because Angela is now hiding under my bed and the old man is in hysterics. And now that we are all laughing, which delights Olympia, then she suddenly yells out "Now I need the damn bed pan!!!" And this is just part of it, she was hilarious til the moment she left. When she was discharged everyone who had tended to her lined up to say goodbye. And you know why, even though she bordered on the annoying, after everything she had been through, instead of pissing and moaning about it, she just decided to have fun. She laughed constantly and she appreciated everything everyone did for her. She spent the entire time lamenting that she wasn't allowed to have the home addresses of the nurses so she could send them gifts. But she just confirmed for me that you get shit thrown your way, you just gotta laugh about it. I mean you can whine and sometimes you should but after a while you gotta just smile. Just because you need to feel good and what makes you feel better than a good laugh? I love Olympia, and at one point they wanted to transfer her out of my room and I called John to tell him I didn't want her to leave. And the nurses were like, why are we transferring her, she goes home tomorrow and she's our gal!

Well I have now meticulously packed the most perfect hospital bag, so next time I head to the ER, I have everything I need for a week hospital stay. I'm hoping that this will garauntee that I will not need to go back to the ER ever again. Like when I finally bought those snow boots after my old ones, broke. It never snowed again. Here's to hoping it works.

Well thanks for hanging in for another edition. Tomorrow is chemo 4. Bright and early! Love you guys! And thanks again for all of the love, support and prayers. They worked on the clot yo!

P.S. amusing highlights 1. I see Dr. Chaloub who I haven't seen since the diagnosis. I am happy to see him but I say "I don't want to miss my chemo apt. tomorrow" and he looks at me like I'm insane. "Um you're brain is bleeding, chemo is kinda on the back burner right now." And even Sloan was like, um hello, we'll push it back a week duh! 2. When we order the TV and Phone two young ladies come in to set it up. One is a tall white blond the other is african-american and my height. They set it up and we pay them for 2 days' rental. 2 hours later one of the admissions girls comes in and says "would you like to pay for the tv and phone" so we tell her we paid already. And she asks, "did you pay a blond girl?" and I said "well there were two young ladies actually" and she says "was one blond and one..." and she leans in and whispers "black?" Now don't get me wrong I know we white people are always freaked out about using the color of someone's skin to identify them. Though right now if you were to describe me to someone you'd say "butch haircut, fat ass, swollen purple face" so being described simply as "white" sounds great to me. But it was the way she whispered it, as though the young lady in question was unaware that she was black. As though she hadn't had that talk with her parents yet and best not to alarm her. Oh white people! ;) Peace yo!