Postcards from POOI

I should have posted these yesterday, but I was too tired.  We went to visit Dr. God F. Gynaecology-Oncology at the Palace of Oncological Innovation in Boston, as scheduled, about three months after my exciting brain tumor exploit.  Everyone was very nice to us there, but as I could have predicted, my true love and I spent six hours of our precious, irreplaceable life together just to obtain 20 minutes with Dr. God and hear his reasons why he still doesn't know what to do for me, including that he was out of town for a week and hasn't yet either read through the copious medical records his office demanded in advance of my visit nor consulted with a melanoma specialist and/or vascular surgeon to determine whether it would even be wise or beneficial for anyone to be operating on me at all at this time.

Good fun!

Contrary to my expectations, the gift shop contained no postcards of the actual Palace ("The Institute," as some of its employees call it in hushed, nigh religious tones).  These snapshots, which begin with a photo my true love demanded I take, will have to do.

As you can see, I have blotted out the name of the Palace wherever it appears on this chilling little card.  For those of you who may not be able to read it, allow me to transcribe the contents:

Teamwork
for safe care

You CAN help [POOI] safely care for you!

Check [and there's a picture of a checklist] to make sure things look right.

Is you chemotherapy the same color as usual?
Are your pills the same shape?

Ask [and there's a picture of a red-lipsticked mouth with question marks coming out of it] questions about your care.

Ask your doctor or nurse to repeat important instructions.
Ask your caregiver if they washed their hands.

Notify [and there's a picture of two people, one wearing a stethoscope and putting her hand on the other's back] us of any problems or changes.

Have you had any side effects since your last visit?
Have there been any last-minute changes to your treatment today?

[The next three things are enclosed in a circle of multi-colored hand graphics.]

Check
Ask
Notify

This is really good advice. Truly!  We should all follow it, and I am not being the slightest bit sarcastic when I say so, although in all honesty I don't really see myself ever asking a healthcare provider whether or not s/he has washed his or her hands.  The reason why it gave us a little chill, however, is that the Palace is famous locally for, among its many other attributes and achievements, having killed a journalist who was also a breast cancer patient by poisoning her with a massive chemo overdose. Oh, if only she had Checked, Asked, and Notified!

This next item is just for my sister, who thinks this chart in all its various forms is a riot and that patients should be given darts to throw at it whenever they are to be left staring at it for too long. (At Lahey, in my elegantly appointed private room, a similar thing was pasted pretty much in the center of where I faced while lying in bed.)

Ah, the pain scale.  Don't you love it?  There's that beautiful yellow-to-red-gradient bar numbered one through ten with a series of six bright cartoon faces, each representing a different level of comfort or discomfort.  We have happy, tolerating things with a smile, tight lipped determination, whimpering, sweating, and finally crying real tears! Mr. Happy is a cheerful yellow, while Mr. Crybaby is fire engine red.

Hey, it works for me.  I've always secretly loved the pain scale graphic.  I have found it quite helpful in communicating with health care professionals -- even when things go to 11.

This last one is just presented as proof that I do not hyperbolize -- well, I do, strictly for entertainment value, but on occasions when I have remarked that whenever I go to an institution of this nature it seems as though not only every building but every floor, every room, nay, every freakin' elevator is named for a different dead rich person, I was not making up stories to make a point.

As you can see, the lovely print just out of frame was donated in the name of another patient.

Look, it's all very well for park benches, but this is a place where people come with big bad problems that tend to kill.  These little plaques of dedication do not tell me "Thanks for saving my life."  They don't say, "Well, thanks for trying real hard even though she died," either, you understand, or "Thanks for still being nice to us even though we can't afford to donate an elevator."  All they tell me, since there is one next to absolutely every piece of artwork I saw at the Palace, is that there are a whole honking lot of cancer patients.

I have instructed my true love, in the hilariously unlikely event that I somehow leave enough money behind and he wants to spend it donating to an institution of this nature, that the money will only be donated on the condition that something be built in honor of "The Anonymous Patient."  I would particularly love for the memorial donation to fund a prominent elevator, escalator or hallway, something toward which employees of the institution will have to direct people several times a day.  "You just take a right down the Hallway of the Anonymous Patient."  "Take the Anonymous Escalator to the Microsoft Wing for the Advancement of Treatment and Brand Development."  "Ride the Anonymous Elevator to level one of the Rockefeller Family Parking Lot below this tower."

Wouldn't that be a gas?

Of course, I'd also be happy if it were only a drinking fountain, an anonymous drinking fountain.  That would be lovely, too, not to mention extremely helpful.

Comments

[Leslie]

wouldn't it be nice to be able to bill the doctors for your time when they waste yours like that? Annoying to spend all that time only to discover he hadn't done his homework. I hope you'll get something useful out of them eventually.

Those graphics are amazing - love the retro look slthough I've certainly wanted to throw darts at stuff like that in every hospital room I've ever inhabited.

All silliness aside, I hope these clowns read all the records you sent them and come up with something useful.

[Sara]

To be fair, it must be understood that Dr. God and his staff were perfectly courteous, and that no one kept me waiting for six hours. Six hours is just how long the entire excursion took. First there was the hour drive, the last third of which was through insane rotaries filled with insane Boston morning traffic. Then there was the hunt for a parking lot with space left in it through cramped, crowded potholed streets. We got to the 10:00 appointment at 9:30, as directed, and then there were activities! I was given a nasty plastic bracelet which I was told all patients were expected to wear while "in the Institute." I was told this was "for patient safety." (I was puzzled at how an itchy plastic bracelet could make me safer. My true love explained that many of the people who visit this place are very, very ill and likely to do things like spontaneously collapse or have a seizure or something. Good to have ID on one's person at a time like that.) After being braceleted, we were sent to an almost completely full waiting room where there were snacks and water bottles, donated pictures on the walls with little tags just like the one I've shown above, and lots of windows. Twenty minutes or so passed, and then a lady called us to come and tell her things which she plugged into a computer, things I'd already put on a form I downloaded off the Institute's website and filled out in advance pursuant to the instructions linked to my appointment notification. We went back to the waiting room. Twenty minutes or so later, another lady came along and called for me to come and have my vitals checked, even though I was not being treated or examined that day. Then she led us to another waiting room across the hall, where I was handed another form to fill out which asked exactly the same questions I'd already answered twice. I was interrupted before finishing this task, and we found out the lady who'd given me this form was new and trying to be helpful. We then went to an examination room where Dr. God's very pleasant physician's assistant went over everything I'd already told everyone on one form or another. Then we waited another 20 minutes while she went and talked to Dr. God. Then we had our 20 minutes with him. Then we went to go find and tour the floor across the street and up a block at the Scary Filthy Teaching Hospital where I would be incarcerated after surgery should we all agree that I should have surgery and should I agree that it should be done at these facilities by these people. By the time we were done with that, my true love was very, very hungry, so we went off to find food -- strangely, not at the Au Bon Pain in the lobby of the SFTH. Then we walked the lumpy, crowded block downhill to the parking structure. Then it was another hour before we were back on our home turf.

A full day! And all we found out was that the floor at SFTH where they stick women after surgery by this guy and his minions is actually very nice. It was as though we were visiting an entirely different hospital than the one I visited five years ago, the one with the barricade of administrators to pass before proceeding to a clinic, the one with filth staining the chairs in the lobby, the one without enough chairs for the orthopaedic oncology patients, the one with overworked, understaffed, nigh hysterical admin cubicles for each clinic, the only hospital where I ever got a persistent infection. All the rooms on this floor we toured, though, are private -- even for indigent, state-funded cases like me. It looked fairly clean (though dimly lit and darkly carpeted which made it hard to tell), and all the staff looked busy but calm. So I think I could in fact bear to be stashed there for a few days, all other things being equal. And that's a useful thing to know, actually.

[The Goldfish]

I tried to leave a comment before but I think it went wrong (recently discovered my habit of closing the window instead of pressing Post or Submit - and there I was thinking everyone was deleting my comments).

Anyway, I wondered whether you could have bits of medical kit named after you, in which case I suggested an endoscope, as future patients would get a real feel for your presence.

I also suggested that the pain scale graphic would be more useful if accompanied by a mirror, so you could see which of the faces you most resembled. I've always found the pain-scale baffling, but essential; it's entirely subjective and unscientific but at least it's better than "It hurts!"

[Leslie]

Knowing that the hospital has become an ok place is a good thing to know. I know I resent the having to tell people the same stuff over and over - the point of telling someone surely should be to get that information in the system so you DON"T have to repeat it ad nauseum but what do I know? oy. Medical systems just seem to grind along with their routines.

Nice to know you'd have a private room anyway.

[Sara]

Ah, Goldfish, I'm so glad you returned to re-comment. I like both your ideas.

I think you may have hit upon a whole new avenue for donations. While I would not wish to have an endoscope named for me, precisely, I might like to donate one, assuming funds were available, in the name of someone else. The Dick Cheney Memorial Endoscope, for example, especially touching if donated while the man still lives, could be quite apt. Or perhaps we could name things like this for corporations, sort of beat them to the branding punch as it were. I can think of many, including but certainly not limited to several private health insurance companies, whose interactions with the populace very much resemble being, er, probed up the ass.

And a mirror while facing the pain scale? Brilliant! Sometimes pain can be disorienting. The only flaw I find in the pain scale graphic overall, however, besides that it is not actually sold as a postcard in any of the myriad gift boutiques we passed, including the one right in front of the registration desk at the women's oncology center at POOI, is that there is no depiction of the stages after crying real tears, no depiction for example of the open-mouthed screaming kind of pain, or the one where you feel like passing out because you don't see how you can maintain consciousness and this level of pain simultaneously. At that point, though, one does expect a certain level of intuition from one's care givers.

Leslie, yes it is a good thing for other patients, too, because I am very, very loud and so is my true love, and so are my family generally. Because of my poverty, I was expecting to have to share a room as a matter of course and was wondering not just how I would bear the no doubt perfectly audible television watching habits of another but how anyone else was going to get well around the amount of impassioned, high-volume conversation and raucous laughter we of my tribe tend to carry with us everywhere. Nice to know neither will be a problem.

[kathy a.]

whoops, i kind of combined comments for this post with the one submitted for the next previous post.

[laurie]

I read this post over the week end and had to come back to comment. If someone just told us about the "Teamwork for Safe Care" poster, we might think they were exaggerating. But you have proof! I have always said that we patients need to be our own advocates but to see a hospital saying - better stay on top of things so we don't kill you! Good for them for being so honest.
And, no, I can't imagine asking my oncology nurses if they have washed their hands.

[Ron Sullivan]

Cripes. There's an Au Bon Pain at Jackson Memorial in Miami, and it serves quite decent fresh
orange juice and food real food. My sisters and Joe and I spent what seemed like a lot of time there, feeling obligated to make fun of a place names Ol' Bone Pain in a hospital complex.

Dulce de leche criossants!

[Carver]

Hi Sara, I came here via Jeanne's site. I think I tried to come before but didn't realize at first I had to look down and click on your blog link. I'm a wee bit slow sometimes. I have to say the pain scale is way up there in my least favorite things. Sometimes I refuse to even answer it. I make them listen to words to describe my "issues" not numbers. Your sense of humor shines through this blog. Take care, Carver

[Carver]

Me again. Ummmm, now I really have demonstrated how slow on the uptake I am. Looking back over your post I realized that you like the pain scale. I was reading fast because there is so much in your blog I wanted to read and look at. Your photographs of animals and plants are up there in terms of things I like to look at, and your way of cutting through it all (all being the sucky cancer melanoma stuff) in a humorous direct way made me want to read that. Anyway, I have to say I think it's kind of cool you like the pain scale and diagrams. It reinforces my instinct that you are an original in every sense of the word since you're the first person I've known who does like the scale. So maybe you'll read this before the other one and not publish either since I'm being even more semi literate than usual. I still can't stand the pain scale but nice to know it's useful for you. Cheers, carver

[Sara]

Kathy A -- Don't worry about it. Commenting on this blog is not a graded exercise. :)

Laurie -- Seriously, it is very strange to me that the hand-washing thing even comes up in this day and age. Ew.

Ron -- While better than a McDonalds, Burger King, or Dunkin' Donuts, I nevertheless do think it's very weird to have an Au Bon Pain in a hospital lobby no matter how yummy their decadences might be. It's just not what I think of as an overwhelmingly healthful menu. It's like a dentist not only giving patients lollipops, but handing them out to the whole family as well.

Carver -- Do NOT be embarrassed. Dissent is not discouraged on this blog, nor are comments or commenting skills graded, as noted above. Shoot, I've been too tired to even reply to comments recently (for example, I slept through yesterday entirely). I enjoy hearing what everybody has to say, though.

I have come to appreciate the pain scale because I have had occasion to resort to it when I have been not exactly verbal. I know; it's hard to imagine me nonverbal, and maybe I should really say verbally incoherent. I like having something I can just point to and grunt. I also like having a common language. If I say "I feel like I have a massive hangover," which is pretty much how I feel when coming out of anaesthesia, that means different things to different people. If I say "I feel like I have a massive hangover, you know, a good solid four but nothing unbearable," well, the care providers and I all have this idiotic graphic in our consciousness, and we all know what a "4" is.

When I had a brain tumor, I was certainly verbal, especially on decadron. However, when I was wheeled into the hospital where I was diagnosed, I was barely conscious and was missing about 40% of my vocabulary. It is for precisely this type of circumstance, not to mention illiteracy or lack of a common language, that this kind of tool has been developed. Yes, words are nice, but uninterrupted linguistic power is not guaranteed from moment to moment to any organic being, know what I mean? (I hope you never find out exactly what I mean firsthand.)

I do think it would make an awesome postcard though. And I'm glad you enjoy my blog. :)

Hang in there, kiddo. Slowly but surely the experts are figuring this all out.

[Sugared Harpy]

I'm thrilled that SFTH is not as horrifying as it was, that it is now at least passable. There's one less piece of junk to worry about maybe.

Oh I LOVE your donating ideas. Working in museums and colleges over the years, loads of shit are named. The ___ Hall or The ___
Gallery. I would love to see the Totally Anonymous But Awesome Hall someday.

[Sara]

Oh, make no mistake: SFTH is every bit as scary, filthy, and dysfunctional as I remember it, everywhere I remember having been before. However, this floor of this wing (and you will forgive me for not remembering whom each is named for) is nothing like that, at least not so far as we could tell taking a casual tour.

Yes, a "Totally Anonymous but Awesome" gallery would be fantastic, especially if all the art were also anonymous!

Still, I mind it less in museums. Museums are about collecting memories, and also I know that for tax and legal purposes as well as the vanity of the donors museums always note who gave each piece of art that is a gift, or who is lending it. But again, that's not the same thing as having everything you see in a place where people come to try not to die marked in memory of someone else.

I read in an ad for a charity golf event (which is, I concede, perhaps not the best place to gather statistics) that one in three people can expect to develop some kind of cancer at some point in his or her life. Big business. Big money. And, oh, the potential for donations!

I don't really see it quite this coldly or sarcastically. But as I noted in comments elsewhere, I still expect my visit to an institution like this to be all about me. Visiting an art museum? Not so much.

[Carver]

Hi Sara, I appreciate you explaining why you like the pain scale because that makes sense to me. I hadn't really thought about how useful it could be when you can't verbalize what's going on. I get frustrated because they always ask me that 1-10 question at routine follow up (oncology and pain management doc) and I'm lucky enough not to have active disease so it's chronic pain (peripheral neuropathy etc.). I always feel like I have to explain what a 10 means to me so when I say 5 that means it hurts like hell but it's not like being hit by a car or natural childbirth or waiting for the morphine button to work the night after surgery. I know I irritate the nurses because they just want a number but I want to make sure they realize what I mean by the numbers.

Your reply to my earlier comment made me realize that the fact that I can go into my long spiel means I'm doing reasonable well. Maybe with me they should rate it by how long I talk. A few words means I'm not doing so well. A sentence is better. A paragraph means I'm doing well enough to be a pain in the ----. Just kidding, sort of, ha. Take care, Carver

[Bipolarlawyercook]

My Better Half will only give money to institutions that put his name above the urinals. Glad you were relieved at the current condition of SFTH. I've never had a problem there-- which is good, since it's where all my doctors are!