So where are we at now?
I meet with Dr. Wendy again to see what the recent CT scan showed.
And it doesn't seem like the one tumor we know about is changing much. It's probably too small for the chemo to accurately target it.
"So now get a PET scan and see what we're dealing with," I add.
And immediately, I'm harassed by Dr. Wendy. "Why do all of my patients today like to second guess me without listening to me."
"Well, it's not like any of this is a surprise to me. We've been down this road several times together," I remind her. That seems to mollify her.
Okay, so no chemo today. Instead, I'll wait for a PET scan to be scheduled at Huntsman Cancer Institute in Salt Lake City again.
Purple Everywhere
Daily Herald picture
Tuesday, March 26, 2013
Wednesday, March 20, 2013
CT Scans and Contrast
It's the day before my CT scan is scheduled, so I have to pick up oral contrast to drink tonight and tomorrow morning before the scan.
On my drive over to Central Utah Clinic's (CUC) Imaging Department, I start thinking about all of the radiologic scans I've had for cancer over the years, lymphangiograms, CT scans, PET scans. I'll bet the numbers are starting to approach 100 (or at least it feels that way to me). That's a lot of contrast that my body has had to deal with.
Every time I have a scan, the technologists seem surprised that I'm not diabetic yet, like my body (pancreas, kidneys, and liver mostly) hasn't started refusing to work properly because of everything it's been subject to so far.
Actually, now that I'm thinking about it, it seems like I was told in the last month or so that my liver enzymes weren't quite normal in a recent blood count and I should start watching that.
Now, I'm a little paranoid about the amount of contrast that I've been pouring into my body; and I'm on the way to pick up two more bottles of the stuff? Not to mention the IV contrast they'll also shoot through my port?
And there's no accounting for body type or size in the contrast they hand you. "CT Scan of the abdomen? Here, drink these two bottles." It didn't matter if I had the scans done when I weighed 231 pounds or now that I'm down to 164 pounds. They want me to pour the same amount of junk into my body and let my kidneys and liver fight to filter it out. That just doesn't seem right.
I arrive at the Imaging Department a little ticked off at Central Utah Clinic's protocols. Huntsman Cancer Institute in Salt Lake City doesn't use any contrast--oral or IV--for PET scans, which are even more detailed than CT scans, because their radiologists have realized the contrast doesn't improve the quality of the pictures enough to justify the potential havoc it can wreak on already-weakened bodies.
So I ask to speak to the radiologist at CUC. Surely, they've got to give some on the amount of contrast they demand when considering my body and all it's been through.
I'm politely told that the radiologist is in a procedure with another patient and they don't usually talk to patients anyway. It's okay. I'm determined. I'll wait. Exasperated by my stubbornness to be heard, the receptionist goes to find a technician that will talk to me. I can hear part of their interchange as I wait at the desk.
"I'll go talk to her. The radiologist is busy."
"Yeah, good luck with that."
So I start telling the technologist that I'm worried about pouring more contrast into my body when it's obviously been through so much already, and that there's no consideration for body type or mass taken into account when handing out contrast.
"You're a male, professional defensive linebacker who's 6'5" and 350 pounds? Great. Drink these two bottles of contrast." "You're a female cancer patient who's 5'0" and 164 pounds? Great. Drink these two bottles of contrast."
Then, and only then am I offered a different style of contrast. One that doesn't take the body 4-5 days to break down, just a couple hours, and one that doesn't have any known side affects or possibility of damaging bodies. I just need to arrive tomorrow morning an hour earlier so I can drink it in the office.
Why aren't patients made aware of the choices they have unless they really push back--hard!--at what's being asked of them?
I arrive the next morning an hour earlier and am asked to drink about half of the volume of what those two bottles of contrast contained. I still leave about a swallowful of the new contrast in the bottom of the glass, just on principle! But I'm pleasantly surprised to find that this new contrast tastes much better. No chalky, milky stuff that I'm afraid my body is conditioned to gag on by now. Instead, it's almost a translucent tart substance.
So I didn't convince them not to give my any contrast, but at least we found a less dangerous and less volume (that still isn't based on my body type or size) compromise.
It pays to speak up and advocate for yourself!
On my drive over to Central Utah Clinic's (CUC) Imaging Department, I start thinking about all of the radiologic scans I've had for cancer over the years, lymphangiograms, CT scans, PET scans. I'll bet the numbers are starting to approach 100 (or at least it feels that way to me). That's a lot of contrast that my body has had to deal with.
Every time I have a scan, the technologists seem surprised that I'm not diabetic yet, like my body (pancreas, kidneys, and liver mostly) hasn't started refusing to work properly because of everything it's been subject to so far.
Actually, now that I'm thinking about it, it seems like I was told in the last month or so that my liver enzymes weren't quite normal in a recent blood count and I should start watching that.
Now, I'm a little paranoid about the amount of contrast that I've been pouring into my body; and I'm on the way to pick up two more bottles of the stuff? Not to mention the IV contrast they'll also shoot through my port?
And there's no accounting for body type or size in the contrast they hand you. "CT Scan of the abdomen? Here, drink these two bottles." It didn't matter if I had the scans done when I weighed 231 pounds or now that I'm down to 164 pounds. They want me to pour the same amount of junk into my body and let my kidneys and liver fight to filter it out. That just doesn't seem right.
I arrive at the Imaging Department a little ticked off at Central Utah Clinic's protocols. Huntsman Cancer Institute in Salt Lake City doesn't use any contrast--oral or IV--for PET scans, which are even more detailed than CT scans, because their radiologists have realized the contrast doesn't improve the quality of the pictures enough to justify the potential havoc it can wreak on already-weakened bodies.
So I ask to speak to the radiologist at CUC. Surely, they've got to give some on the amount of contrast they demand when considering my body and all it's been through.
I'm politely told that the radiologist is in a procedure with another patient and they don't usually talk to patients anyway. It's okay. I'm determined. I'll wait. Exasperated by my stubbornness to be heard, the receptionist goes to find a technician that will talk to me. I can hear part of their interchange as I wait at the desk.
"I'll go talk to her. The radiologist is busy."
"Yeah, good luck with that."
So I start telling the technologist that I'm worried about pouring more contrast into my body when it's obviously been through so much already, and that there's no consideration for body type or mass taken into account when handing out contrast.
"You're a male, professional defensive linebacker who's 6'5" and 350 pounds? Great. Drink these two bottles of contrast." "You're a female cancer patient who's 5'0" and 164 pounds? Great. Drink these two bottles of contrast."
Then, and only then am I offered a different style of contrast. One that doesn't take the body 4-5 days to break down, just a couple hours, and one that doesn't have any known side affects or possibility of damaging bodies. I just need to arrive tomorrow morning an hour earlier so I can drink it in the office.
Why aren't patients made aware of the choices they have unless they really push back--hard!--at what's being asked of them?
I arrive the next morning an hour earlier and am asked to drink about half of the volume of what those two bottles of contrast contained. I still leave about a swallowful of the new contrast in the bottom of the glass, just on principle! But I'm pleasantly surprised to find that this new contrast tastes much better. No chalky, milky stuff that I'm afraid my body is conditioned to gag on by now. Instead, it's almost a translucent tart substance.
So I didn't convince them not to give my any contrast, but at least we found a less dangerous and less volume (that still isn't based on my body type or size) compromise.
It pays to speak up and advocate for yourself!
Monday, March 18, 2013
Another Hiccup
So maybe I don't make the best choices sometimes.
It's Sunday, St. Patrick's Day, and I want to wear a pair of green wedge platforms for the holiday. I took trial run with them Saturday night to the adult session of Stake Conference. They're not heels where I'm forced to try and balance on the soles of my feet only and they're only about a 2.5" platform, so I figure it's safe to proceed
We have about ten minutes before we have to leave Sunday morning. Everyone's ready or finishing their preparations, so I head back to the closet to grab my green platforms. Before I make it out of our bathroom, I've managed to roll my left ankle pretty severely and even cry out from the pain and the suddenness of being so off balance; but I'm determined to proceed.
I make it out to our living room where Dale, Miriam, Travis, my sister Tressie, her two daughters Karli and Kayla, and some other girls are waiting for us to leave. Before I've moved two steps from the edge of our couch, I roll my ankle twice more, with Dale having to reach out and catch me the last time.
Without missing a beat, he asks "What flats should I go get you?" and he kicks that pretty green platform right off my left foot.
Darn! I guess you shouldn't try to wear platform shoes when you can't feel your feet. If you can't walk or balance in regular shoes, any type of heel probably isn't the best decision.
We make it to Stake Conference and are ushered to the front so that Dale, Tressie, and I can sit together at the end of a row (while Miriam, Travis, and the rest of the girls get to sit in the back). Travis is carrying my bag, so it goes back with them without me realizing that I don't have it.
Almost as soon as I sit down, my foot starts throbbing. It's not so painful, but I can feel every heartbeat vibrating through it and there is a little pain associated with each beat.
"Dale, I think I need to go out and prop my foot up," I whisper to him. So a few minutes later, I'm hobbling on one good foot and dragging a large oxygen tank and its cart out the chapel doors to the nearest couch.
Tressie comes out a few seconds later and offers to drag a folding chair over as a place to prop up my foot and that's how we spend Stake Conference.
On Monday, my foot is a little swollen and a little bruised and I wonder how much damage I really did to it. Because I can't really feel it, is it possible I broke it and don't know?
Knowing my propensity for having multiple issues with my body, I head off to Urgent Care in Lindon.
"I need to have my left ankle x-rayed to ensure that I didn't break it," I inform the front desk staff and the attending nurse. I'm assured that I'm the next patient and that the doctor will be with me shortly.
After what seems like an hour and after I've had a chance to devour an entire magazine, I hobble out to find my sheet on the door and look at the time I was checked in. 11:08 a.m. It's now 12:06 p.m., so it has been an hour. I'm kind of surprised that my internal clock is so accurate.
When I ask the nurses how much longer, they agree it's been too long and they'll take me back for x-rays before the doctor sees me so he can look at them when he's finally finished with the other patient.
About ten minutes later, after x-rays, Dr. Garrett Smith comes in and says, "Yeah, well you did a good job. I'm pretty sure your ankle is broken. You'll need to be on crutches for at least two weeks."
Knowing what my body has been through and that chemo zaps calcium from bones, I automatically translate, "Okay for me, that means at least four weeks and probably more like six." Then I say, "Yeah, well as soon as you help me figure out how to hobble on crutches while dragging oxygen around, I'm all over your plan." Crutches are just not going to work.
During our conversation, I tell him that I can't really feel my feet due to the grade 3 or 4 peripheral neuropathy. Yet twice during our time together, he says "Just let pain be your guide. If it's hurts, don't walk on it" and "I can prescribe something for pain."
Pain? What pain? If I think about it hard, there might be some aching bone pain that might register about a 3 on the 1-10 usual pain scale. I'm certainly not taking anything (not even Ibuprofen) for a 3. And if I can walk on it as long as it doesn't hurt, I'm good to go now.
Nope, not without having to discuss whether we should cast it or put a walking boot on my left foot.
"What's the easiest to walk on?" I ask. Definitely the walking boot, so I'm fitted with a large, clunky, heavy black boot before managing to leave the office.
My life is a comedy of errors at this point. Hobbling around in a heavy walking boot and dragging oxygen is quite the balancing act, without bringing the numbness from the neuropathy into the equation. What else can I do at this point but just laugh? And laugh I do!
When one of my visiting teachers hears that I've broken my ankle, her first impression is to bring her family home from Disneyland so she can help me. Are you kidding? It's a great thought, but my ankle is just another silly part of my life right now. It's not like I need surgery or it's bad enough that I can't be mobile. It's just a laughable addition to my life at this point. The thought is comforting and amazing but definitely not needed!
It's Sunday, St. Patrick's Day, and I want to wear a pair of green wedge platforms for the holiday. I took trial run with them Saturday night to the adult session of Stake Conference. They're not heels where I'm forced to try and balance on the soles of my feet only and they're only about a 2.5" platform, so I figure it's safe to proceed
We have about ten minutes before we have to leave Sunday morning. Everyone's ready or finishing their preparations, so I head back to the closet to grab my green platforms. Before I make it out of our bathroom, I've managed to roll my left ankle pretty severely and even cry out from the pain and the suddenness of being so off balance; but I'm determined to proceed.
I make it out to our living room where Dale, Miriam, Travis, my sister Tressie, her two daughters Karli and Kayla, and some other girls are waiting for us to leave. Before I've moved two steps from the edge of our couch, I roll my ankle twice more, with Dale having to reach out and catch me the last time.
Without missing a beat, he asks "What flats should I go get you?" and he kicks that pretty green platform right off my left foot.
Darn! I guess you shouldn't try to wear platform shoes when you can't feel your feet. If you can't walk or balance in regular shoes, any type of heel probably isn't the best decision.
We make it to Stake Conference and are ushered to the front so that Dale, Tressie, and I can sit together at the end of a row (while Miriam, Travis, and the rest of the girls get to sit in the back). Travis is carrying my bag, so it goes back with them without me realizing that I don't have it.
Almost as soon as I sit down, my foot starts throbbing. It's not so painful, but I can feel every heartbeat vibrating through it and there is a little pain associated with each beat.
"Dale, I think I need to go out and prop my foot up," I whisper to him. So a few minutes later, I'm hobbling on one good foot and dragging a large oxygen tank and its cart out the chapel doors to the nearest couch.
Tressie comes out a few seconds later and offers to drag a folding chair over as a place to prop up my foot and that's how we spend Stake Conference.
On Monday, my foot is a little swollen and a little bruised and I wonder how much damage I really did to it. Because I can't really feel it, is it possible I broke it and don't know?
Knowing my propensity for having multiple issues with my body, I head off to Urgent Care in Lindon.
"I need to have my left ankle x-rayed to ensure that I didn't break it," I inform the front desk staff and the attending nurse. I'm assured that I'm the next patient and that the doctor will be with me shortly.
After what seems like an hour and after I've had a chance to devour an entire magazine, I hobble out to find my sheet on the door and look at the time I was checked in. 11:08 a.m. It's now 12:06 p.m., so it has been an hour. I'm kind of surprised that my internal clock is so accurate.
When I ask the nurses how much longer, they agree it's been too long and they'll take me back for x-rays before the doctor sees me so he can look at them when he's finally finished with the other patient.
About ten minutes later, after x-rays, Dr. Garrett Smith comes in and says, "Yeah, well you did a good job. I'm pretty sure your ankle is broken. You'll need to be on crutches for at least two weeks."
Knowing what my body has been through and that chemo zaps calcium from bones, I automatically translate, "Okay for me, that means at least four weeks and probably more like six." Then I say, "Yeah, well as soon as you help me figure out how to hobble on crutches while dragging oxygen around, I'm all over your plan." Crutches are just not going to work.
During our conversation, I tell him that I can't really feel my feet due to the grade 3 or 4 peripheral neuropathy. Yet twice during our time together, he says "Just let pain be your guide. If it's hurts, don't walk on it" and "I can prescribe something for pain."
Pain? What pain? If I think about it hard, there might be some aching bone pain that might register about a 3 on the 1-10 usual pain scale. I'm certainly not taking anything (not even Ibuprofen) for a 3. And if I can walk on it as long as it doesn't hurt, I'm good to go now.
Nope, not without having to discuss whether we should cast it or put a walking boot on my left foot.
"What's the easiest to walk on?" I ask. Definitely the walking boot, so I'm fitted with a large, clunky, heavy black boot before managing to leave the office.
My life is a comedy of errors at this point. Hobbling around in a heavy walking boot and dragging oxygen is quite the balancing act, without bringing the numbness from the neuropathy into the equation. What else can I do at this point but just laugh? And laugh I do!
When one of my visiting teachers hears that I've broken my ankle, her first impression is to bring her family home from Disneyland so she can help me. Are you kidding? It's a great thought, but my ankle is just another silly part of my life right now. It's not like I need surgery or it's bad enough that I can't be mobile. It's just a laughable addition to my life at this point. The thought is comforting and amazing but definitely not needed!
Tuesday, March 5, 2013
Tenth (and Last!) Adcetris Dose
You can tell that Dr. Wendy is consulting with others about my case in between my treatments. Today, she has an entirely new plan.
We'll go ahead with today's dose of Adcetris, then get a CT scan to see where the tumor is at. It seems chemo isn't as effective at reaching cancerous tumors once they're smaller than about a centimeter, so we might have to do radiation to get rid of it entirely.
No real changes with chemo. It's just business as usual, so we'll wait to see what the CT scan shows.
We'll go ahead with today's dose of Adcetris, then get a CT scan to see where the tumor is at. It seems chemo isn't as effective at reaching cancerous tumors once they're smaller than about a centimeter, so we might have to do radiation to get rid of it entirely.
No real changes with chemo. It's just business as usual, so we'll wait to see what the CT scan shows.
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