June 15, 2007
Overheard at the Hospital
In admissions waiting room:
You think this is bad, imagine how long we'd be waiting with socialized healthcare.
Apparently, the rich in Los Angeles believe that socialized medicine would mean they'd have to wait in line with all the "undesirables" of the city.
They never bother to stop and think - the entire reason we had to wait in an admissions department is for someone to correctly input our private insurance information. And since Everyone But One Person decided to take a lunch break at the same time, I ended up sitting in that waiting area for close to 1.5 hours.
Can't wait for Sicko to come out...
Posted by cj at 07:27 AM | Comments (0)
June 14, 2007
Toxic!
Cue the Britney music.
I am officially toxic. Step I forgot to put in place but will: getting a doctor's note to explain why I might set off the sensors when flying in late July. Woohoo! Good times.
Things I missed most while in radiation isolation at the hospital: the internet and my Rhapsody music. Things I thought I'd do but didn't: read anything of consequence longer than a speech about RAI isolation.
If you're curious, follow me over the jump for the gory details. Actually, they're not that gory. I had my aunt in fits of laughter last night describing it all to her.
Background: I have thyroid cancer. Had a 1.4 cm malignant nodule - papillary carcinoma, follicular variant, fully differentiated and encapsulated on my thyroid. The nodule, along with a 1.6 cm benign nodule and my entire thyroid were removed on February 2. For a variety of reasons, my Radioactive Iodine (RAI) ablation was scheduled for June 12.
Here's the process: go off T4 drugs 6 weeks before treatment. Take T3 drugs for first 4 weeks. Go off all meds and onto a Low Iodine Diet (LID) last two weeks and 24-48 hrs after RAI.
Iodine is (unnecessarily in my opinion) added to table salt in the States. It's used by the thyroid to create thyroid hormone. Thyroid cells are basically the only part of your body that take up iodine (smaller amounts can be taken up by salivary glands). For the most effective RAI, a patient should be on LID for 2 weeks before swallowing RAI. The theory is, by denying the cells iodine they're more likely to be eager to take up the iodine that is radioactive. This radiation kills off any remaining thyroid cells in your body, making recurrence of the cancer highly unlikely. Of course, it may not kill all thyroid cells, and/or your body might grow new thyroid cells, so life long vigilance is necessary.
Also necessary is not eating or drinking too much before swallowing the radioactive pill. I went to Cedars-Sinai last Tuesday, where the nuc med doc told me to eat at noon and then come to the hospital. Clearly, the man has Absolutely No Concept of Distance or Traffic In Los Angeles. I live in Northridge. The hospital is across the street from the Beverly Center. You do the math.
So, Tuesday morning, I ate an egg white omelet with coffee and orange juice. (Verboten foods on LID: iodized salt incl packaged and pre-made food, egg yolks and all other dairy, soy including tofu, all seafood, red dye #3, store bought bread b/c its made with iodized salt). Around 11 am I had a peanut butter and jelly sandwich on matzah. Also that morning, I call my endocrinologist's office to fax me my blood results. Last Thursday, my TSH was 52.7. It has to be over 30 to do ablation, so I'm clearly hypo enough to do this crap. 11:20, my dad drove me to the hospital. We got there at 12:15 - a bit early, but who knows what the traffic will be like in LA?
Waited in the imaging waiting area for 25 minutes to sign paper work. Then sent across the street to hospital admissions. Got there at 12:40. Waited in that waiting area until after 2 p.m. Obnoxious women were eating even though there was clearly a sign that said no eating or drinking in the waiting room. They were also having extremely loud, obnoxious convos as only over-privileged women can.
Finally was called and asked why the wait. Was told it was because of the "flood" of arrivals. More likely cause: everyone was on lunch break at the same damn time. My dad had his own doc appt to go to, so once I finished the admissions process and was sent to the lobby to wait for someone to take me to my room, he left.
Old man walks up and asks what I'm here for. I said "to be admitted to the hospital." He takes me up the elevator, helping with my paper bags (can take things into isolation, but can't take them out). We get to my room - it's clearly marked with a radiation sign and inside everything is covered in sheets and plastic wrap. He looks at me and I say "would you like some cookies? My mom baked them for the staff and I can't eat any of them because of my diet." So he says he'll take one, does so and leaves.
I have a bit of a cry (you try looking at that room and not getting scared), dry my tears and walk to the nurses station. I ask if I have to wait in that room. They say yes. They also ask why my doctor didn't do blood work. I said - what are you talking about? I went to the doctor last Thursday and he drew blood. They say the hospital has no record of it, and that they need a CBC (complete blood count). I had left my copy of the blood work at home, but knew this wasn't what my doc did - all he did was check my thyroid hormone levels. Great.
Eventually, a nurse comes to my room and explains that my pill usually arrives at 4:45. Let's get this straight: I haven't eaten since 11 a.m. and I can't eat until 2 hrs after taking the pill. Also, the Entire Reason I'm In The Hospital Is To Be In Isolation After Swallowing The Pill. So really, all I'm doing is wasting my day at the hospital waiting for this damn pill and getting hungrier and hungrier. Right. So the nurse shows me the bed and the bathroom. Brings me extra towels and extra gowns. Asks my shoe size for socks. Tells me to change into my hospital gown. Also makes sure to bring a refrigerator into my room. Too bad I didn't bring more food / drinks with me.
The nurses continue to freak out about not having my blood tests. They freak out more when I say I don't have good veins. Eventually they use a butterfly needle in my right wrist. So much for texting a lot during this ordeal, I think. (Thankfully, it didn't hurt and I was able to use my phone to my heart's content. In addition to texting my friends, I got the greatest pics of my nephews.)
It is freezing in the room. But I have to change, so I do. I sit on the chair, then on the bed with the t.v. 4:45 comes and goes. At 5 I call the nurse asking where my pill is. At 5:10 I call my mom to complain. She tells me I should walk to the nurses station and not leave until they give me the damn pill. Finally, at 5:15 the nuc med doctor shows up with the frickin pill.
More background on this doctor: he's Eastern European and has a Huge Growth on the Side of his Right Nostril. This is the type of thing one usually only sees on people with no health insurance. It's really all a normal person can look at on the man. He also sounds like he's still practicing medicine in a Soviet republic. I ask why I've been here since 12:30. He says so I can fill out paperwork. I said that even with all the waiting, I was done with paperwork several hours ago, why did I need to wait for so long for the medicine? After all, I had to stop eating at 11 am to get here by 12:30 and I'm really hungry and still need to wait another 2 hrs. No real answer.
Meanwhile, he's not even the guy with the pill. A poor tech wheeled it in and has been listening to the conversation. Wheeled it in. Yes, it was so radioactive, it has its own medal casing on wheels. I wanted it in a paper cup, but instead, I'm handed it in the plastic bottle it originally came in. We discuss water - I say I'm happy to drink it straight from a plastic bottle (I'm not going to try to get into the political ramifications of bottled water at this point). I look at the pill - its average size in clear gel encasing. Have to tap it out of the plastic container (which is why thyca survivors suggest getting it in a paper cup or the lid of the bottle rather than like this), have to hold it on my tongue for a few seconds while I open the water bottle, and its done.
The Ignorant Nuc Med Doc repeats his advice to drink when thirsty for the first 2 hrs than to drink as much as possible after that to flush it out of my system. I nod and wait for them to leave.
On the advice of thyca survivors (on the Thyca Yahoo Group), I had already decided his advice was bogus - if you drink too much in the first 24 hrs you risk flushing out the radioactive iodine before it has time to make its way to the thyroid bed and kill your thyroid cells, thereby decreasing the effectiveness of your RAI and increasing your chance of having to go radioactive again.
Meanwhile, food services has confirmed that the only dinner option I have is Kosher Chicken. I try to explain that kosher chicken isn't good on LID b/c salt is used in the kashering process and the woman on the phone says "if its on the menu, its acceptable on the diet."
My hypo mind makes the decision to follow listserv advice and eat peanut butter on matzah for dinner. Let me be clear: I hate matzah. When I was younger, I kept kosher on Passover, which meant matzah was the only bread product I ate for 8 days. Now, its been my only bread for 2 weeks. But I figure this is a small price to pay to ensure my radiation is effective.
Of course, when the food arrives at 7:15 I am so famished that I eat the damn chicken and try not to worry about it later. It came with yams, cooked spinach, a whole banana, and a baked apple. Missing were the baby carrots I ordered as my salad. Have I ever mentioned how repulsive I find cooked spinach? When I finish eating, I feel very guilty. Now I have to clean up. I remember I'm supposed to throw things down the toilet (except chicken bones), but I can't bring myself to do it, so I wrap it up and throw it all in the garbage can.
Went to sleep relatively early, still freezing. Covered in about six blankets and no socks. Also - the hospital only provides short sleeve gowns. Bottoms are not even an option. The next day, when the Nice Nurse comes back on duty, she says "you're cold? Well the thermostat is right here - it's set to 68. What would you like it at? 75? I'll do it, but you know, you can change it too."
Say what? When I said I was cold yesterday, you brought me blankets. Also, when I looked around the room, I assumed the only things I should touch were covered in sheets or plastic wrap. And finally, who's heard of hospital room where you can adjust the temperature?
Right. I eat my breakfast (oatmeal with brown sugar, coffee that's surprisingly good, and an orange). So I'm having a lazy morning, thinking about how I should get up and take a shower when my friend Camille calls from New York. The perks of having unemployed friends: they have plenty of time to gab with you. So, we're chit chatting. She's regaling me with a story about a subway ride that turned into the most hellish night ever, and the other line rings. I tell her I have to take it - knowing its the kitchen wanting to know what I want for lunch.
The woman says I can have a regular lunch. I surprise her by telling her I don't want a regular lunch. Hello people. I need to wait at least 24 hrs after taking the pill before going off the LID. So we settle on turkey, lettuce, tomato, tossed salad, and a banana. Then I figure, I need to take a shower before the guy with the geiger counter comes. So I go into the bathroom and as soon as I get naked there's a knock at the door. Of course the guy comes as soon as I'm naked. So, I say I'm taking a shower and he leaves. Surprisingly, the shower has amazing water pressure. I enjoy it, change into my next set of hospital gowns, and get back into bed.
Nice Nurse comes in with my lunch. Tells me that the guy with the geiger counter came out and told her I wasn't in my room. She told him that was unlikely, since she's sure I understand that I'm not supposed to leave my room. Let's get this straight: the man didn't see me when he walked into the room, so he assumed I had left. Apparently, the idea that I was in the bathroom (naked but not yet in the shower) hadn't occurred to him.
So I'm getting more nauseous after lunch and ask for the anti-nausea medicine. Turns out its a shot in the arm muscle. All the shot seems to do is add arm pain to the nausea.
Right, so he came back a bit later and measured me. Said I was 80 at the neck and 70.4 in the stomach. I believe it was about 17 at 3 feet away. I asked what we were looking for - he said less than 5 and that we should get there by tomorrow if I drink plenty of water. Remember, I'm silently going against all of their advice: not starting lemon drops or juice until 24 hrs after the pill and only drinking when thirsty until 24 hrs after the pill.
Around 4, I get lonely and I'm still queasy, so I call my dad. He says Cedars-Sinai admissions left two messages for me on my home phone: yesterday and today. I say "you didn't talk to them? You don't know what they want?" He says "no, you're at the hospital, don't worry about it." So, after hanging up, I call hospitality services who transfer me a million times and finally I leave a message for someone. She calls me back and whines at me. Literally, she's whining while explaining that she didn't call my house, she just called Blue Cross today for authorization of my procedure. She says my records clearly state I was an urgent admit yesterday. I was like, "Excuse me? This has been scheduled for over 6 weeks, why didn't you get authorization before I entered the hospital? Because there are insurance companies that deny coverage for inpatient service for this procedure." She has no answers and I'm mildly amused that a 2+ hour wait is their definition of an urgent admit. I'd hate to see how long it takes to be admitted from the ER.
I had the kosher chicken again the second night, but wasn't as worried b/c it was past the 24 hr mark. Besides, I've been eating so much chicken on the LID that it feels normal. I'm still a bit queasy, so I don't eat my entire meal and end of flushing a bunch of it down the toilet. At this point, I'm also worried about the baked apple I ate the first night since it had something red on it, which was probably the Red Food Dye #3 I was supposed to avoid. Jesus does this hospital food LID suck.
I had difficulty sleeping the second night. I was worried what the schedule was for Thursday. No one had gone over it with me and my hypo mind was a wee wary of its memory abilities. Nurse comes in at 6:45 am and asks if I have showered already. Uh, no. The one thing I clearly remember is that I'm not supposed to get back into bed after showering. But I can't remember if I'm supposed to put on a hospital gown until after I'm checked with a Geiger counter. She tells me to shower and put on my street clothes. and sit on the couch (which she has now covered with a second sheet, even though I never sat on it when it was covered in one sheet).
So I go back into the shower and decide that it'll help if I wash and shampoo several times. Actually, what would've helped is if I had showered several times throughout my stay, but whatever. So, after a really long shower, I use some lotion, finally accept that I need to throw my underwear in the trash can, put on my clothes and sit on the couch, waiting to be taken for a Whole Body Scan (WBS).
At 8:30 Another Nurse comes in with my breakfast. I say "can I eat that before my scan?" She says "oh you're still waiting for that? Yeah, don't eat until after your scan." I'm thinking - after my scan aren't y'all kicking me out? Isn't that why I'm in my street clothes?
So I'm wheeled down for the exam on a gurney. And I'm left sitting there on the gurney while people are talking around me and this odd group of Family of a Patient nosily look into the imaging area. I know they are Family of a Patient because the exact same people (wearing roughly the same clothes) were in the imaging area 2 days ago when I was waiting to sign paperwork before being admitted.
Finally, I'm wheeled into a room and told they'll be doing a head and neck scan for 5 - 10 minutes followed by a whole body scan for 10 - 15 minutes. I figure I can wait this long before going to the bathroom. Then they strap me in - it was so uncomfortable. My arms did not make it onto the table, they were strapped to my body. And they told me it was important to remain absolutely still. Mind you, the MRIs I had took forever because I couldn't stay still and that was on a slab that was perfectly capable of holding my entire body.
Finally, it's done and I ask how they deal with 300 pound patients. They say they just cram them onto the same table. That it's not a problem when the 300 pound guy is tall, but if they're really short, it can be a problem. I thought that's just odd and ask to use the bathroom. The lab tech explains that I had the "grand daddy of all nuc med treatments" since I'm still radioactive (b/c I swallowed the nuclear waste) and to be sure to flush 3 times after using the toilet. I smile, thinking about the Radiation Safety Officer who posted on the ThyCa listserv that he thinks this is just a waste of water since your radioactive pee was sufficiently sent down the drain with the first flush.
Right, so then I go to the patient waiting area and wait. Finally, the Geiger Counter Guy comes back and tells me I'm 58.5 at my neck and 7.5 three feet away. He says it depends on metabolism how fast it gets out of the system and since my metabolism was really slowed down for this dosage, it's going to take awhile to get to a safe amount.
He says, "But you're going to a hotel, right?" I say, "no, I'm going home." He asks, "Are there any kids or pregnant women at your house?" I say, "no, I have my own room and my own bathroom and was told people should stay six feet away from me until Sunday." He walks a little bit farther and says "this is six feet away and you're still at an unsafe reading." I ask what we're going to do and he says "I'm not sure. I'm going to discuss it and will be back."
So he leaves and I'm left to listen to The Really Old Guy Across From Me Talk With His Doctor Friend while waiting for some scan. My sister sends me a pic of Isaac making a raspberry and I laugh. The old men look at me and I say "I got a picture of my nephew."
Geiger Counter Man comes back and says "Good news - you can go home today. But you should stay in isolation until Saturday afternoon. Sorry about that. And when you come back on Tuesday for your WBS, be sure to ask to be measured again." Also says I'll be seeing the nuc med doc and the radiation safety officer again before leaving.
The Ignorant Nuc Med Doc comes back and tells me the good news is that all of the uptake was in my thyroid bed. He says he's looked at the WBS image and at this point, there's no reason to drink a lot of liquid because all of the radioactive iodine that's going to leave my system has left. I explain that I want copies of all of my records and he gives me a look like "silly girl, you can't possibly understand these complicated things." Then he says I have to call Medical Records for these things. And that he's already sent a copy of his first report to my endocrinologist and will send the endocrinologist copies of his report today and from next Tuesday. What a schmuck! When I told my surgeon the same thing, he had the nurses make me copies of my surgery and discharge papers.
Then he leaves and I have to wait and wait and wait some more for someone to come for me. Finally, a transport tech comes and wheels me back to my room. From there, I text my dad and tell him that I think I'm waiting for a Radiation Safety Officer and that this might go faster if they come up to the 8th floor and ask the nurses for me. So, my folks come up and then the nurse comes to my room and says my family is waiting for me and that she'll page the safety officer. So I text my dad again thanking him for coming.
Mind you, the other reason I had been brought back to the room was to eat and "collect my things." Unclear why they would allow me to collect radioactive things. I decide to have peanut butter on matzah rather than the now-cold breakfast food they had brought at 8:30 a.m.
Around 11 a.m., the nurse comes in and says that since I talked to the Guy with the Geiger Counter, I don't need to speak with a Radiation Safety Officer. She has my discharge papers - reads it to me, has me sign it, gives me a copy, and says I can go. Transport arrives with a wheelchair, but sees that I'm completely mobile. Asks if I want to walk down, I say sure. My folks are at the nurses station. Along comes an RN with patient services who asks me to describe my experience with the hospital. I gave her the bare bones of the above entry as we walk down the hall and downstairs.
So that's it. I think. I'm staying in my room at home - at least here I have the internet, DirectTV, and music. I slept a lot this afternoon. Covered some stuff in plastic, just to be safe. Sorta wondering exactly how safe it is for me to be out of the hospital at this point, but can't get too worried. At least it's easier to sleep in my own bed.
Posted by cj at 07:45 PM | Comments (0)