Well, that was an adventure. I went in to the cancer center for the radioactive isotope test Friday.
I really don't like going to the cancer center. If my doctor wasn't so nice, I'd just stop going. It's a seriously difficult place to be. And I gotta say I feel really weird being the healthiest person in the place (not counting employees).
Right now, I'm feeling pretty good- thanks to PT, I'm pain-free and no pain meds for 2 weeks. I even recently managed to (at last) wean off my sleep med, after 4 years of taking it. So now all I'm taking is 1 blood pressure med, 2 herbs, and a multivitamin. Thanks to my gluten free mostly vegan diet, my hair and skin are healthier. And I don't weigh myself, but I seem to be a size smaller than I was last year. Maybe even 2 sizes. I'd like to stay feeling well. It never seems to last long. I'm doing everything in my power to get and stay healthy, and I don't want a setback.
So you can imagine that when walking the halls of the cancer center past people on stretchers that look like they are on their last gasps, I'm really hoping to not need the treatment that they're getting. I can't help feeling quite a bit of anxiety every time I walk in that place.
We had to wait 3 hours after the injection of radioactive isotope before I could get the test. So I decided to live out one of my odd little fantasies: I always wanted to take a nap in central Park. Because NY City is so freaking hectic, I just wondered what it would be like to be right in the middle of the most insane city on earth, and take a nap. I brought a blanket, and Joe and I did just that. (bucket list: check){note: if this is your fantasy too, I strongly suggest not doing this alone- and choose a heavily populated area and maybe wrap your purse strap around your leg }
Now back to the cancer hospital, where I nearly had a panic attack when they brought that bone scanner camera down to about 2 inches from my face and left it there running for 10 minutes. That and I knew I was getting exposed to radiation. Which, ironically, causes cancer. The whole test took about an hour. That's a lot of radiating.
A hour later, see the doctor, still can't make a definitive diagnosis- my tumor defies easy categorization, so we're going to xray it semi-regularly to make sure it's not growing. OK, fine.
Now I've spent the entire day getting this test and waiting for answers that didn't come, so I'm in dire need of comfort food. I remember a classmate from a creative writing class who said he had a restaurant in NYC that served nothing but mac and cheese- including gluten-free mac and cheese. Now if mac and cheese isn't comfort food i don't know what is. Couldn't remember the name of it, so i called a friend who looked it up online (no i don't have an iphone- i can't use that annoying screen to type). S'mac! That's the name of it. And yeah it was YUM, although my stomach was confused by the sudden bombardment of cheese. Next time I'll get the vegan gluten free mac and cheese- yes they have vegan too! The I asked if they had gluten free cookies and they said no, but there's a GF bakery on the next block!!! So we went I and had 3 miniature GF cupcakes! My Italian husband was so delighted to see me overeating...
Monday, August 16, 2010
Saturday, July 31, 2010
PT
my latest adventure in healthcare: i'm getting physical therapy.
For the chronic pain in my upper body. The pain meds don't work anymore, and the pain has been keeping me up at night and driving me batty.
It seems I have overworked the front of my torso with guitar playing and swimming and typing, and totally not used my back and shoulders.
My evaluation was illuminating- they could just about literally push my arm down with a feather. No strength at all.
So, we're working on strengthening the back/ shoulder muscles.
I get heat (ahh), a brief massage (ahh), then she pushes on my spine (ugh!), then we get to exercising, then ice.
word to the wise: all PTs, like all doctors, are not the same. I asked a neighbor who is a PhD in PT, where I should go, and she sent me to a sport medicine facility. these folks were great diagnosticians and their goal is to get you back to doing the things you love- not to tell you that you just have to live with the pain and limit activity.
A cool little apparatus I came home with: the backnobber. You can basically massage yourself with this thing, get those knots out of your upper body. Very cool for me, because my back recreates those things pretty quickly after they are rubbed away.
So far, I am seeing improvement, and at this point, that's enough to keep me going back.
For the chronic pain in my upper body. The pain meds don't work anymore, and the pain has been keeping me up at night and driving me batty.
It seems I have overworked the front of my torso with guitar playing and swimming and typing, and totally not used my back and shoulders.
My evaluation was illuminating- they could just about literally push my arm down with a feather. No strength at all.
So, we're working on strengthening the back/ shoulder muscles.
I get heat (ahh), a brief massage (ahh), then she pushes on my spine (ugh!), then we get to exercising, then ice.
word to the wise: all PTs, like all doctors, are not the same. I asked a neighbor who is a PhD in PT, where I should go, and she sent me to a sport medicine facility. these folks were great diagnosticians and their goal is to get you back to doing the things you love- not to tell you that you just have to live with the pain and limit activity.
A cool little apparatus I came home with: the backnobber. You can basically massage yourself with this thing, get those knots out of your upper body. Very cool for me, because my back recreates those things pretty quickly after they are rubbed away.
So far, I am seeing improvement, and at this point, that's enough to keep me going back.
Wednesday, July 21, 2010
New Clinical Trials for lupus
Hey y'all
There are several new clinical trials open for people with lupus.
I don't' know anything about them, except that you need to be diagnosed with lupus and live near the clinic (birmingham, AL, Indianapolis, or Phoenix).
Have a look.
http://www.clinicalconnection.com/SearchStudies.aspx
There are several new clinical trials open for people with lupus.
I don't' know anything about them, except that you need to be diagnosed with lupus and live near the clinic (birmingham, AL, Indianapolis, or Phoenix).
Have a look.
http://www.clinicalconnection.com/SearchStudies.aspx
Sunday, July 11, 2010
My arm is fine (mostly)
Well, I learned a new word yesterday: enchondroma.
This is a kind of tumor when part of your bone turns back into cartilidge. Apparently, bones start out this way in the first place. So, unless this thing becomes cancerous (only some of them do) or much larger (I'm in that "not quite a problem but almost" zone), we won't be doing anything but monitoring it. No surgery, no chemo (phew! I don't have to lose my hair again!).
I will, however be getting one more test just to try and get a little more info: a radioactive isotope test. Yes, they're shooting radioactive dye into my veins. Then I have to wait 3 hours while it works its way through my system and then i lie around for 45 minutes while they scan me. I'm pretty good at lying around, having had much experience, but I'll keep practicing just to be sure. One more adventure in health care. And I get to hang out at Sloan Kettering in New York City, the creme de la creme of hospitals. Even the robes are nice. And the doctor was great. I'm telling you, I'm never going back to my old cruddy system of just grabbing the first guy out of the phone book. If you must go to a doctor- and if you have a chronic illness, you must- wow, referrals are so important.
Meanwhile we haven't figured out what's causing the pain in my arm, as it may not be the enchondroma but possibly one of my various autoimmune conditions. We're complicated creatures, we autoimmuners, and we can be very tricky to treat. If it's not the enchondroma, then perhaps it's the chronic inflammation. Just guessing.
'Til next blog post,
Be well, all. and thanks for all the well wishes.
This is a kind of tumor when part of your bone turns back into cartilidge. Apparently, bones start out this way in the first place. So, unless this thing becomes cancerous (only some of them do) or much larger (I'm in that "not quite a problem but almost" zone), we won't be doing anything but monitoring it. No surgery, no chemo (phew! I don't have to lose my hair again!).
I will, however be getting one more test just to try and get a little more info: a radioactive isotope test. Yes, they're shooting radioactive dye into my veins. Then I have to wait 3 hours while it works its way through my system and then i lie around for 45 minutes while they scan me. I'm pretty good at lying around, having had much experience, but I'll keep practicing just to be sure. One more adventure in health care. And I get to hang out at Sloan Kettering in New York City, the creme de la creme of hospitals. Even the robes are nice. And the doctor was great. I'm telling you, I'm never going back to my old cruddy system of just grabbing the first guy out of the phone book. If you must go to a doctor- and if you have a chronic illness, you must- wow, referrals are so important.
Meanwhile we haven't figured out what's causing the pain in my arm, as it may not be the enchondroma but possibly one of my various autoimmune conditions. We're complicated creatures, we autoimmuners, and we can be very tricky to treat. If it's not the enchondroma, then perhaps it's the chronic inflammation. Just guessing.
'Til next blog post,
Be well, all. and thanks for all the well wishes.
Sunday, June 6, 2010
referrals only from now on!
I had a really unpleasant experience Friday morning with an orthopedist. He asked for my history so I told him i had lupus and his immediate reaction was "who told you you had lupus?" "about 20 different doctors over about 18 years." Then he goes on to tell me he doesn't believe that diagnosis until he runs his own test or talks to my rheumatoloist. Then he wants to know if I had an internist, a cardiologist, etc. I say "no, I get tired of going to appointments and they're running redundant tests, so I just go to one doctor. I used to have all those specialists but I don't feel I need that many doctors." I guess in his mind, if i don't have about 10 doctors, I must not have lupus. Now look, I don't *want* to have lupus. I wish I didn't have lupus. I hope one day I don't have lupus. And now I'm sitting here having to defend this diagnosis to this jerk, when I didn't even go in there about lupus in the first place. I just want to know what this thing is on my friggin' arm. Is it a tumor? A mass? a Cyst? Why are we having this conversation???
But I can't let this go, so I convince him I have lupus by telling him the details of my most recent labs: postive ANA, double stranded DNA, high sed rate, nephritis. I tell him I've been on prednisone for over a year at 3 different occasions.OK, now he believes me. But now he has to scare the crap out of me by telling me how common it is for people who've taken prednisone to end up having hip necrosis (bone death in the hips). Gee thanks, that's really helpful. (How'd you like some face necrosis?) And so relevant to the conversation about whether or not i have cancer in my arm. Oh and if I ever have hip necrosis, I should come back and see him. Not no but hell no.
Now that we've sat through 2 excruciating opening acts, can we get on with the main attraction, the whole point of my being here? The test results, please. Well, it's a tumor, he says, delivered with the same dispassionate tone of voice you'd use to tell someone that the telephone bill just arrived.
Now he wants me to get this isotope test to determine whether it's benign (or not). I express concern- aren't they going to shoot radioactive dye into me. His response (and I quote) "so what?" So my grandmother died from an iodine test, that's so what. I have a history of kidney failure, and shooting poisonous crap into my veins is risky, that's so what.
Well the good news is, he is not qualified to work on tumors, so I never have to see or talk to him again. I have to go to an orthopedic oncologist. He referred me to one, but it occurred to me that anyone who's a friend of his might share his bedside manner, so I decided instead to save myself further insult to my existing injury, and possibly further injury as well. I suspect if they killed me or accidentally lopped off my arm they'd still send me a bill and say "so what?"
Lucky for us we have a friend in the area who is a really good doctor and a decent person, so we called him and got a referral to a different ortho oncologist. I'm not going to any more doctors without a referral from someone who knows them. And if they don't like it, "so what?"
In the future, I'd love to be able to take the "Who told you you have lupus" as a compliment to my appearance rather than an insult to my intelligence. I am glad don't look sick right now. But I don't like defending my diagnosis. Do doctors do this with other diseases? "Who told you you have cancer? Who says you have MS?" I don't know, maybe they do. But there's got to be a better way to present such a question.
But I can't let this go, so I convince him I have lupus by telling him the details of my most recent labs: postive ANA, double stranded DNA, high sed rate, nephritis. I tell him I've been on prednisone for over a year at 3 different occasions.OK, now he believes me. But now he has to scare the crap out of me by telling me how common it is for people who've taken prednisone to end up having hip necrosis (bone death in the hips). Gee thanks, that's really helpful. (How'd you like some face necrosis?) And so relevant to the conversation about whether or not i have cancer in my arm. Oh and if I ever have hip necrosis, I should come back and see him. Not no but hell no.
Now that we've sat through 2 excruciating opening acts, can we get on with the main attraction, the whole point of my being here? The test results, please. Well, it's a tumor, he says, delivered with the same dispassionate tone of voice you'd use to tell someone that the telephone bill just arrived.
Now he wants me to get this isotope test to determine whether it's benign (or not). I express concern- aren't they going to shoot radioactive dye into me. His response (and I quote) "so what?" So my grandmother died from an iodine test, that's so what. I have a history of kidney failure, and shooting poisonous crap into my veins is risky, that's so what.
Well the good news is, he is not qualified to work on tumors, so I never have to see or talk to him again. I have to go to an orthopedic oncologist. He referred me to one, but it occurred to me that anyone who's a friend of his might share his bedside manner, so I decided instead to save myself further insult to my existing injury, and possibly further injury as well. I suspect if they killed me or accidentally lopped off my arm they'd still send me a bill and say "so what?"
Lucky for us we have a friend in the area who is a really good doctor and a decent person, so we called him and got a referral to a different ortho oncologist. I'm not going to any more doctors without a referral from someone who knows them. And if they don't like it, "so what?"
In the future, I'd love to be able to take the "Who told you you have lupus" as a compliment to my appearance rather than an insult to my intelligence. I am glad don't look sick right now. But I don't like defending my diagnosis. Do doctors do this with other diseases? "Who told you you have cancer? Who says you have MS?" I don't know, maybe they do. But there's got to be a better way to present such a question.
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