Memorial Sloan Kettering goes to great lengths to make their hospitals, as much as possible, feel like something other than a hospital. Like a museum or an art gallery in places, like a spa or a playground in other parts, or like home perhaps, except it comes about as close as an old folks home--enough to assuage the conscience of those responsible for leaving you there, but not quite enough for either patient or retiree to be fully convinced.
I am writing from the "general medicine/geriatric" floor instead of peds because there were no rooms down on nine. (Not to worry though--after I had complained badly about missing out on the Friday night candy cart by not being on peds, it made a special trip up to 17 to make sure I got my sugar high. I got fig newtons and Pringles when they didn't my favorite Reese's peanut butter cups, they made an extra fun to find some in their candy warehouse!) so perhaps that explains the old fol folks home reverence. (Facing the bed where it can't be missed is a glow-in-the-dark CALL DON'T FALL! sign.)
But seriously, I guess I can appreciate the nicer wallpaper, the nicer wallpaper, the photo of a sunset, and the 'welcome' flower I got on both day one and day three of my current inpatient run. --Funny aside on the flowers: They are both carnations in small brown bottles that appear to be recycled from the pharmacy and the first one is white with pink edges and the second one is all pink. I was asleep when the second one arrived and when I opened my eyes all I could see in my view was the new all-pink carnation. So I groan; "Do you know how depressing it is that that flower is ALL PINK?" Of course they didn't. So I explain that it was white when it got here and then it was white with pink edges, and they must have put food coloring in the water because now it was all pink and what do they want to do--make you feel miserable that you've been cooped up in here for so long that your welcome flower changed colors, or make you think you're crazy? At which point I did feel crazy because my visitors quietly pointed to the original flower (still white with pink edging) and explained they'd just brought by a fresh one for me.
So back to why I find it annoying that my hospital room is floored with fake marble linoleum. I think it's because when I get out of bed and reach to unplug my IV pole and I see that hideous linoleum, which was chosen to give me the illusion of home furnishing, I just think this: "god! I would never in a million middle-aged years choose this linoleum! Who do they think they are fooling?"
But I do like the curtains with their faint batik-like plant designs.
Saturday, October 25, 2008
Friday, October 17, 2008
Any Bruises?
That is what the nurse in the pre-surgery waiting area asked me on Tuesday in preparation for placement of a "metaport" under the skin just below my right shoulder. It's funny, because this was less than a week since I was on the same floor waiting for a thorocoscopy to remove a pea-sized "node" from my chest. (A thorocoscopy is when they make tiny little cuts in your back and slip cameras and tiny tools in through your ribs and steal part of your flesh while they are at it.) And just the day before another surgeon had stabbed the hell out of the vein on the left side of my chest only to discover that it was too scarred already to accept another central line (it would've been it's third)--which is why I was there in the first place. So yes, I was most definitely bruised.
Then she goes on to ask a series of qustions that make her chuckle and laugh to herself at their absurdity. Questions like "do you have trouble seeing?" (not really, but I do wear glasses for distance) and "do you wear a hearing aid?" This one in particular she thought was hilarious to have to ask me. Afterall, how could such a healthy-looking young person need hearing aids? I do not, in fact, wear hearing aids. BUt my ears have been ringing for the last three years--ever since a particularly toxic round of chemotherapy left me with minor hearing loss. I won't, at this point, be having that type of chemo again, so hopefully I won't need hearing aids before my 30th birthday; but maybe let's not laugh at the absurdity of such a possibility while I wait to have a permanent line place in my chest for the purpose of receiving high-dose chemotherapy.
Then she goes on to ask a series of qustions that make her chuckle and laugh to herself at their absurdity. Questions like "do you have trouble seeing?" (not really, but I do wear glasses for distance) and "do you wear a hearing aid?" This one in particular she thought was hilarious to have to ask me. Afterall, how could such a healthy-looking young person need hearing aids? I do not, in fact, wear hearing aids. BUt my ears have been ringing for the last three years--ever since a particularly toxic round of chemotherapy left me with minor hearing loss. I won't, at this point, be having that type of chemo again, so hopefully I won't need hearing aids before my 30th birthday; but maybe let's not laugh at the absurdity of such a possibility while I wait to have a permanent line place in my chest for the purpose of receiving high-dose chemotherapy.
Tuesday, October 14, 2008
Carnival Spirit
I named this new blog Cancer Carnival because I wanted to get at the feel of the pediatric ward. It is brightly colored, surprisingly friendly, and always a whirlwind of activity that is at once exotic, enthralling, and frightening. And I looked up the definition of 'carnival' on Merriam-Webster, and they included both of the following:
a) "an instant of riotous excess"
b) "an organized program of entertainment and exhibition"
Both of which ring true to me. For one thing, hospitals must create enough trash to fill themselves to overflowing every day. I think there is a small army of men in blue polo shirts and scrub pants who do nothing but remove garbage all day long, because otherwise all the needles and plastic tubing and plastic bins and Styrofoam cups of coffee or ice chips or water to take pills with, all of the vomited up ills, all of the cold, bland hospital food thought better of upon sight; it would all just keep piling up until we suffocated if there weren't diligent, underpaid workers constantly shuffling it out the back door.
And then there is the excess of the medicine itself. From the official treatments of chemotherapy and radiation that nearly kill you as they heal you, to all the million other drugs you take to get you through, it is truly the definition of excess. Don't get me wrong--I fully and willingly participate in the excess. I ask for the IV drugs even when I know the pain or the nausea or the anxiety could probably be tamed with a pill; but why bother when the high is so much faster and nicer and longer with a shot? Why else allow them to poke so many wholes in me?
And let's not forget the emotional excess. No, emotional is not the right word here--there is that, of course, the fear of death, the loss of independence, of normalcy, and a whole variety of other anguish that I will surely explore in these electronic pages--but what I mean is the excess of material goods that result from the anguish of others. All the sorrow and pity and guilt that is turned into both individual gifts (I have already been the recipient of a generous gift certificate at the Chocolate Room--Thanks Mocky & Brad) to whole foundations dedicated to making sure sick kids get cool presents (while inpatient on Valentine's Day 2006 Mikey's way gave me an ipod!) to grants to the hospital for things like free all-day parking in Manhattan whenever I have an appointment at the pediatric clinic.--It's like walking down the aisles of carnival candies and prizes and not having to win any games or pay for any snacks put all the hawkers are actually trying to give you everything. Just 'cuz your bald! (There actually is a literal candy cart that comes around the inpatient peditric ward on Friday nights with all the major brands of candy and fresh popcorn and lets you take literally whatever you want, for free. This is not a joke.)
And that's just one definition! The other one that struck me--an organized exhibition--well, sometimes I wonder how organized they are. For example, on a day like today, when I got there, as requested, at 7am, for a surgery I wasn't called for until well after noon (they needed me there in case there was time earlier, between other procedures). At 10am they woke me up and told me I needed to the 18th floor for an echo cardiogram. But since they aren't used to dealing with adults, they forgot that the 18th floor is closed for construction of something and echo is on the 4th floor in a different wing of the hospital now. So once I find the right waiting room I sit there for an hour (reading, of all things, cosmo girl), and just when mom and I get to the point where we are ready to ask if they'd somehow left us off the list (having seen the waiting room entirely flip over), mom walks up to the counter while a young woman finally appears to call my name and brunette behind the counter simultaneously announces that I am needed back up in Peds because the OR opened up. So I walk myself up from the 4th floor, A wing, to 9th floor B wing, just in time to be wheeled by gurney to the 6th floor, M wing, where I wait for over two hours before I am actually taken into an OR.
Oh, and by the way, no has at this point explained to me why I need an echo cardiogram. We did get some kind of explanation from the surgeon before he cut me again, but he was a little put out since it had nothing to do with what he had to do--place a 'port' under my skin on my upper right chest. Eventually--back in Peds around 6pm after sleeping off the wonderful pain meds and anesthesia--I did get an explanation about the echo: there's a blood clot and scarring on a vein near my heart where I had some central lines last time around that may or may not be new but they just noticed it so they need a better look to find out if they need to give me some medicine to dissolve it. Scary. But apparently no big deal.
Of course, lots of things are no big deal when you also have cancer.
But all of that blather was really just supposed to be a clever little introduction for the real topic of of this entry. What I really wanted to talk about was my spirit. and getting back to that carnival spirit I was so often praised for over the last three years. I hadn't realized myself how badly I was taking all of this until the people around me started telling me bluntly.
This morning my girlfriend left for Vancouver. We spent an entire year, August to August, trying to live and work in the same place as one another, and all our efforts finally paid off when she joined me in Vancouver, Canada, this past August. And now I am back here. In the city that I love, the apartment in Brooklyn that I love, with my best friends in the world--at the hospital that I cannot praise enough. But I am sick in the scariest way and my girlfriend is trying to immigrate to another country, while I, ironically, sit here with a valid Canadian work permit wondering when the hell I will be able to work again.
Last night, as we were saying our good byes and plotting her next visit, and wondering how we'd both get through this, she practically begged me to take care of myself. She couldn't stop repeating that what she needed me to do most to help her through this is to take care of myself and find a way--hopefully several ways--to release all these feelings I've been having, all this anger at my reality. And then today, at least twice, my mom got all serious and worried and sad looking and I could see the desperation in her eyes as she tried to reassure me that it would be all right, that we will get through this again, that it won't be that bad, that the obstacles to living the life I want are not so insurmountable. And I told her, sincerely, that I knew that. And she said "but you just look so sad all the time."
And while it nearly broke my heart to hear the tone in her voice as she said that, I think it was just the trick. I think the only thing it really broke was the frozen veneer I've had encasing my heart this last week. I think I am finally ready to let some of it out.
On the way home today, I came up with the idea for this post, I thought maybe it would help me get back some of that magic 'carnival spirit' that got me through this for the last three years. And I think it did the trick, but not in the way I expected. Writing all the 'intro' really got me smiling and laughing at the absurdity of it all again--and when I can rise about the misery of it and laugh at all the little contraindications and inconsistencies and, well, nonsense, that's when I know I will be O.K.
a) "an instant of riotous excess"
b) "an organized program of entertainment and exhibition"
Both of which ring true to me. For one thing, hospitals must create enough trash to fill themselves to overflowing every day. I think there is a small army of men in blue polo shirts and scrub pants who do nothing but remove garbage all day long, because otherwise all the needles and plastic tubing and plastic bins and Styrofoam cups of coffee or ice chips or water to take pills with, all of the vomited up ills, all of the cold, bland hospital food thought better of upon sight; it would all just keep piling up until we suffocated if there weren't diligent, underpaid workers constantly shuffling it out the back door.
And then there is the excess of the medicine itself. From the official treatments of chemotherapy and radiation that nearly kill you as they heal you, to all the million other drugs you take to get you through, it is truly the definition of excess. Don't get me wrong--I fully and willingly participate in the excess. I ask for the IV drugs even when I know the pain or the nausea or the anxiety could probably be tamed with a pill; but why bother when the high is so much faster and nicer and longer with a shot? Why else allow them to poke so many wholes in me?
And let's not forget the emotional excess. No, emotional is not the right word here--there is that, of course, the fear of death, the loss of independence, of normalcy, and a whole variety of other anguish that I will surely explore in these electronic pages--but what I mean is the excess of material goods that result from the anguish of others. All the sorrow and pity and guilt that is turned into both individual gifts (I have already been the recipient of a generous gift certificate at the Chocolate Room--Thanks Mocky & Brad) to whole foundations dedicated to making sure sick kids get cool presents (while inpatient on Valentine's Day 2006 Mikey's way gave me an ipod!) to grants to the hospital for things like free all-day parking in Manhattan whenever I have an appointment at the pediatric clinic.--It's like walking down the aisles of carnival candies and prizes and not having to win any games or pay for any snacks put all the hawkers are actually trying to give you everything. Just 'cuz your bald! (There actually is a literal candy cart that comes around the inpatient peditric ward on Friday nights with all the major brands of candy and fresh popcorn and lets you take literally whatever you want, for free. This is not a joke.)
And that's just one definition! The other one that struck me--an organized exhibition--well, sometimes I wonder how organized they are. For example, on a day like today, when I got there, as requested, at 7am, for a surgery I wasn't called for until well after noon (they needed me there in case there was time earlier, between other procedures). At 10am they woke me up and told me I needed to the 18th floor for an echo cardiogram. But since they aren't used to dealing with adults, they forgot that the 18th floor is closed for construction of something and echo is on the 4th floor in a different wing of the hospital now. So once I find the right waiting room I sit there for an hour (reading, of all things, cosmo girl), and just when mom and I get to the point where we are ready to ask if they'd somehow left us off the list (having seen the waiting room entirely flip over), mom walks up to the counter while a young woman finally appears to call my name and brunette behind the counter simultaneously announces that I am needed back up in Peds because the OR opened up. So I walk myself up from the 4th floor, A wing, to 9th floor B wing, just in time to be wheeled by gurney to the 6th floor, M wing, where I wait for over two hours before I am actually taken into an OR.
Oh, and by the way, no has at this point explained to me why I need an echo cardiogram. We did get some kind of explanation from the surgeon before he cut me again, but he was a little put out since it had nothing to do with what he had to do--place a 'port' under my skin on my upper right chest. Eventually--back in Peds around 6pm after sleeping off the wonderful pain meds and anesthesia--I did get an explanation about the echo: there's a blood clot and scarring on a vein near my heart where I had some central lines last time around that may or may not be new but they just noticed it so they need a better look to find out if they need to give me some medicine to dissolve it. Scary. But apparently no big deal.
Of course, lots of things are no big deal when you also have cancer.
But all of that blather was really just supposed to be a clever little introduction for the real topic of of this entry. What I really wanted to talk about was my spirit. and getting back to that carnival spirit I was so often praised for over the last three years. I hadn't realized myself how badly I was taking all of this until the people around me started telling me bluntly.
This morning my girlfriend left for Vancouver. We spent an entire year, August to August, trying to live and work in the same place as one another, and all our efforts finally paid off when she joined me in Vancouver, Canada, this past August. And now I am back here. In the city that I love, the apartment in Brooklyn that I love, with my best friends in the world--at the hospital that I cannot praise enough. But I am sick in the scariest way and my girlfriend is trying to immigrate to another country, while I, ironically, sit here with a valid Canadian work permit wondering when the hell I will be able to work again.
Last night, as we were saying our good byes and plotting her next visit, and wondering how we'd both get through this, she practically begged me to take care of myself. She couldn't stop repeating that what she needed me to do most to help her through this is to take care of myself and find a way--hopefully several ways--to release all these feelings I've been having, all this anger at my reality. And then today, at least twice, my mom got all serious and worried and sad looking and I could see the desperation in her eyes as she tried to reassure me that it would be all right, that we will get through this again, that it won't be that bad, that the obstacles to living the life I want are not so insurmountable. And I told her, sincerely, that I knew that. And she said "but you just look so sad all the time."
And while it nearly broke my heart to hear the tone in her voice as she said that, I think it was just the trick. I think the only thing it really broke was the frozen veneer I've had encasing my heart this last week. I think I am finally ready to let some of it out.
On the way home today, I came up with the idea for this post, I thought maybe it would help me get back some of that magic 'carnival spirit' that got me through this for the last three years. And I think it did the trick, but not in the way I expected. Writing all the 'intro' really got me smiling and laughing at the absurdity of it all again--and when I can rise about the misery of it and laugh at all the little contraindications and inconsistencies and, well, nonsense, that's when I know I will be O.K.
Sunday, October 12, 2008
A Fresh Start
Three years ago I was diagnosed with Stage IV Neuroblastoma--a rare disease made rarer still at my ripe old age of 24 (this is a pediatric cancer)--then went and joined Friendster and discovered the blog function there. I was clean for two and a half years and my blogging tapered off along with the bad news; but last week I was told that it's back, so it seemed like time to pick up the keyboard again. I plan to be much more grown up about things this time--I know my way around the hospital and the doctors and the poisons they plan to pump into me, so i ought to be able to do a better job this time, and I figured I deserved a makeover for more than just my puke-bucket.
So here i am on blogspot. I chose the polka dots because it is reminiscent of the decorations in the pediatric day hospital, where my incongruous life has led me to spend far too many days. I'm not sure exactly what form these 'confessionals' (my first blog was called Cancer Confessional) will take, but it seems important to have an outlet. Writing seemed to save me the first time around, so I'll give it a chance to do so again. But look forward to archives or links to the original Confessional or even unpublished entries from the last few months leading up to this new reality. And of course, as always, I'd love to hear your comments.
So here i am on blogspot. I chose the polka dots because it is reminiscent of the decorations in the pediatric day hospital, where my incongruous life has led me to spend far too many days. I'm not sure exactly what form these 'confessionals' (my first blog was called Cancer Confessional) will take, but it seems important to have an outlet. Writing seemed to save me the first time around, so I'll give it a chance to do so again. But look forward to archives or links to the original Confessional or even unpublished entries from the last few months leading up to this new reality. And of course, as always, I'd love to hear your comments.
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