I am taking my night time dose of decadron with dinner now, in the hope that I can sleep.
It's not working yet.
I am up, ironing. The closet, she is almost empty of clothes being held hostage in a deplorable wrinkled condition.
Surprisingly, Lou is a little overwhelmed with all his wardrobe choices and is finding it more difficult to put together a cute outfit in the morning.
Yeah, that was a complete lie.
He basically just picks whatever is next in line. He's going to kill me now. Hee hee. Make fun of my accent, see what happens.
Oh, and we are making sure he knows how to post to this blog so he can update y'all on surgery day.
Sent from my Verizon Wireless Phone
Monday, April 30, 2012
Should I Keep to a Schedule?
At about 3AM, legs cramps woke me up. Luckily the sprained ankle is just a bit swollen and bruised, so I can walk around fine now, so I walked out the cramps. Lou helped by fetching me Gatorade.
I tried to go back to sleep. Lou accomplished that task, I am happy to report. I played Words With Friends and read some CNN articles off my cell. But around 4AM, there were foot cramps, and I gave up hanging in bed waiting for sleep.
So I wandered up to the guest room and looked through some more summer clothes and then picked an old Agatha Christie to re-read. I am hanging in my office, reading.
The question is, is this okay? If I am up at 4AM, how's that gonna impact my day? And my sleep tonight?
But now that I am out on disability... maybe I should just embrace whatever wacko sleep patterns get imposed by the decadron.
With any luck, the decadron goes away after the surgery. With the decadron gone, I ought to be able to sleep an 8 hour night.
In one hour, Lou's coffee machine will roar like a jet engine, grinding beans for his morning brew. That's his alarm clock.
I tried to go back to sleep. Lou accomplished that task, I am happy to report. I played Words With Friends and read some CNN articles off my cell. But around 4AM, there were foot cramps, and I gave up hanging in bed waiting for sleep.
So I wandered up to the guest room and looked through some more summer clothes and then picked an old Agatha Christie to re-read. I am hanging in my office, reading.
The question is, is this okay? If I am up at 4AM, how's that gonna impact my day? And my sleep tonight?
But now that I am out on disability... maybe I should just embrace whatever wacko sleep patterns get imposed by the decadron.
With any luck, the decadron goes away after the surgery. With the decadron gone, I ought to be able to sleep an 8 hour night.
In one hour, Lou's coffee machine will roar like a jet engine, grinding beans for his morning brew. That's his alarm clock.
Sunday, April 29, 2012
Walker Time
This morning I was in my closet, pulling out long sleeves to make room for short, and my left ankle collapsed.
I fell into a shelf, thank God.
I also screamed at the top of my lungs for like 10 seconds. In the quiet aftermath, I expected neighbors banging on the door, but none came. Good to know.
Anyway, I hobbled to a chair.
It's just a sprain. Since basketball days, my ankles have taken a beating.
Luckily, good friends right at the top of the hill delivered me a walker, which has been a huge help today.
Sent from my Verizon Wireless Phone
I fell into a shelf, thank God.
I also screamed at the top of my lungs for like 10 seconds. In the quiet aftermath, I expected neighbors banging on the door, but none came. Good to know.
Anyway, I hobbled to a chair.
It's just a sprain. Since basketball days, my ankles have taken a beating.
Luckily, good friends right at the top of the hill delivered me a walker, which has been a huge help today.
Sent from my Verizon Wireless Phone
Wide Awake
I am up.
I did a little ironing, and now I'm just watching TV.
No pain, which is awesome. It must be the decadron hyping me up.
Sent from my Verizon Wireless Phone
I did a little ironing, and now I'm just watching TV.
No pain, which is awesome. It must be the decadron hyping me up.
Sent from my Verizon Wireless Phone
Saturday, April 28, 2012
My Typical Day
It's so weird being out on short term disability and waiting for surgery.
Here is my typical day. I wake up around 6:30 in pain.
I've try to take the morning dose of decadron plus a narcotic painkiller and go back to sleep, but I guess I have finally been on the decadron long enuff for it to be making me Wide Awake and Too Talkative...
Thus, I am up. Breakfast with Lou and morning news. I also make a move in up to like 10 Words With Friends games that I have going.
Since I took a painkiller, no driving for 4 hours.
Lou and I try to figure out what one thing we are going to accomplish together that day once the four hours is up and I have a window for driving.
I am basically good for one errand, after the painkiller wears off. I can do one thing, then come home, take a painkiller, and sleep.
Today, the one thing was lunch at Larry's Southern Kitchen (yum) on Tryon Road in Garner followed by buying a fresh can of tennis balls at Target for Bailey.
I was doing fine till we had to walk thru the entire Target to get to sporting goods.
Had to stop three times and pretend to study products on the lowest shelf, so I had an excuse to bend all the way forward to stretch my spine.
The pain shooting down my right leg was almost unbearable, but went away temporarily with each bend.
If they hadn't assured me I won't fall down paralyzed just yet, I might have been worried.
As usual, I slept all afternoon. And then evening and TV and bedtime...
I was pretty much refusing to take any pain meds all day, bc I am afraid of them, but what was happening was that the pain got crazy out of control, and it would take one dose, four more hours in pain, and then a second dose would finally kick in after an hour or two.
And during that whole time I would be unable to walk or sit, and it would tear Lou up.
So I have agreed to manage the pain better while we wait for the surgery.
Sent from my Verizon Wireless Phone
Here is my typical day. I wake up around 6:30 in pain.
I've try to take the morning dose of decadron plus a narcotic painkiller and go back to sleep, but I guess I have finally been on the decadron long enuff for it to be making me Wide Awake and Too Talkative...
Thus, I am up. Breakfast with Lou and morning news. I also make a move in up to like 10 Words With Friends games that I have going.
Since I took a painkiller, no driving for 4 hours.
Lou and I try to figure out what one thing we are going to accomplish together that day once the four hours is up and I have a window for driving.
I am basically good for one errand, after the painkiller wears off. I can do one thing, then come home, take a painkiller, and sleep.
Today, the one thing was lunch at Larry's Southern Kitchen (yum) on Tryon Road in Garner followed by buying a fresh can of tennis balls at Target for Bailey.
I was doing fine till we had to walk thru the entire Target to get to sporting goods.
Had to stop three times and pretend to study products on the lowest shelf, so I had an excuse to bend all the way forward to stretch my spine.
The pain shooting down my right leg was almost unbearable, but went away temporarily with each bend.
If they hadn't assured me I won't fall down paralyzed just yet, I might have been worried.
As usual, I slept all afternoon. And then evening and TV and bedtime...
I was pretty much refusing to take any pain meds all day, bc I am afraid of them, but what was happening was that the pain got crazy out of control, and it would take one dose, four more hours in pain, and then a second dose would finally kick in after an hour or two.
And during that whole time I would be unable to walk or sit, and it would tear Lou up.
So I have agreed to manage the pain better while we wait for the surgery.
Sent from my Verizon Wireless Phone
Friday, April 27, 2012
Plan B Surgery
Plan "B" is the "better" plan. It took me a day or so to come around to that.
Plan A was the Cadillac approach: 2 surgeries, 5 days apart, removing 95% of the tumor, inserting a big cage and a rod, and then requiring me to spend maybe 2 weeks in the hospital plus maybe 4 weeks in a rehab before even being allowed to come home.
But the vascular surgeon sort of put the kibosh on Plan A.
What with having two abdominal surgeries already (they should have installed a zipper), plus radiation, plus a mesh screen to repair an incisional hernia -- well that presents quite a tricky minefield of possible combinations. Dr Ford estimated that there was a 20% chance of him doing some catastrophic damage to my abdomen just trying to clear the path to the vertebrate. My quality of life could be completely wrecked, and what we are trying to preserve here is my quality of life.
Now, if Plan A had a chance to be curative, then 20% might be something we could live with, might be worth he risk. But it won't be curative.
So we are falling back on Plan B.
This will be one surgery, all done from the back. It will actually be a lot more technically challenging for Dr Jaikumar. Might take him 8 hours. He expects to remove about 85% of the tumor. He'll be leaving a lot of bone in place, so there might not be a cage. If a cage or other structure is needed (in addition to the rod) then he has a couple of options for whatever will fit in from the back.
Coming in from the back, he'll be right in there with all the nerve roots and stuff, but they will be sending electrical signals through to monitor that nothing is being stretched too far during the entire surgery. That is kind of cool.
I'll recover much faster from Plan B, which means I will be able to start a new chemo way faster after Plan B than after Plan A. And I need to get back on some chemo quick. Got to beat back the cancer, especially since it's starting to act all aggressive and annoying.
Dr Jaikumar also reminded me that his goal is not to scoop out all the cancer. His goal is to fix the compression problem and reinforce my spine so L5 does not abruptly collapse and leave me paralyzed. Since both Plan A and Plan B would do that just fine, why wouldn't we choose the one that will be much easier and faster?
The new date for the surgery is May 9. We needed a day when Dr Jaikumar could work on my all day long... gosh it's going to be a long ordeal for poor Lou, Patsy, and Omer in the waiting room.
I have already talked to Dr R about the next chemo.
I have also started all the paperwork for the short term disability. It is pretty upsettig not to be working. Plus I think I am driving Lou nuts by being home. He is trying to work and trying to keep an eye on me all at the same time.
Plan A was the Cadillac approach: 2 surgeries, 5 days apart, removing 95% of the tumor, inserting a big cage and a rod, and then requiring me to spend maybe 2 weeks in the hospital plus maybe 4 weeks in a rehab before even being allowed to come home.
But the vascular surgeon sort of put the kibosh on Plan A.
What with having two abdominal surgeries already (they should have installed a zipper), plus radiation, plus a mesh screen to repair an incisional hernia -- well that presents quite a tricky minefield of possible combinations. Dr Ford estimated that there was a 20% chance of him doing some catastrophic damage to my abdomen just trying to clear the path to the vertebrate. My quality of life could be completely wrecked, and what we are trying to preserve here is my quality of life.
Now, if Plan A had a chance to be curative, then 20% might be something we could live with, might be worth he risk. But it won't be curative.
So we are falling back on Plan B.
This will be one surgery, all done from the back. It will actually be a lot more technically challenging for Dr Jaikumar. Might take him 8 hours. He expects to remove about 85% of the tumor. He'll be leaving a lot of bone in place, so there might not be a cage. If a cage or other structure is needed (in addition to the rod) then he has a couple of options for whatever will fit in from the back.
Coming in from the back, he'll be right in there with all the nerve roots and stuff, but they will be sending electrical signals through to monitor that nothing is being stretched too far during the entire surgery. That is kind of cool.
I'll recover much faster from Plan B, which means I will be able to start a new chemo way faster after Plan B than after Plan A. And I need to get back on some chemo quick. Got to beat back the cancer, especially since it's starting to act all aggressive and annoying.
Dr Jaikumar also reminded me that his goal is not to scoop out all the cancer. His goal is to fix the compression problem and reinforce my spine so L5 does not abruptly collapse and leave me paralyzed. Since both Plan A and Plan B would do that just fine, why wouldn't we choose the one that will be much easier and faster?
The new date for the surgery is May 9. We needed a day when Dr Jaikumar could work on my all day long... gosh it's going to be a long ordeal for poor Lou, Patsy, and Omer in the waiting room.
I have already talked to Dr R about the next chemo.
I have also started all the paperwork for the short term disability. It is pretty upsettig not to be working. Plus I think I am driving Lou nuts by being home. He is trying to work and trying to keep an eye on me all at the same time.
Tuesday, April 24, 2012
One Tid Bit
I have one tidbit to share, but it isn't a savoury little morsel.
Today I was wondering how the heck a slow-growing LMS got so huge in L5 all of a sudden, so I logged onto the Duke Health Portal and started reading back through my recent CT Scan Reports. (It is pretty cool that I have access to all my reports online.)
Anyway, I knew that the tumor was first mentioned in an MRI report from October 2010 as a tiny spot. There was no need to go back that far in the history to start looking, so instead I focused on the two reports from this year.
In the February 2012 report, there was no mention of L5. In the January 2012 report, there is a note that L5 is "stable." Hmmm. I was about to scroll back to like November 2011 when Dr Reidel called.
(What perfect timing. He is just awesome. I really feel lucky that he is my oncologist.)
Anyway, he had been doing the same exact thing. But he talked directly to the radiologist who prepared the reports and who clarified that although the tumor at L5 was not mentioned in the February report, it was there, and it was "stable."
So, it was stable and tiny in January and February -- and it fricking blew up to eat my L5 by April?! How could that be?
"I thought leiomysarcoma was slow growing," I protested.
Not true, he said. If a tumor is "high grade" then it can be very aggressive. And (finally we get to the unpalatable tidbit) the tumor that they found after my hysterectomy was high grade.
Then it all came back to me. I remembered my first oncologist running through a list of perhaps 5 different measures of seriousness, drawing me a diagram, and explaining that the tumor they found scored pretty badly on every single measure. Definitely high grade. I guess I knew that but had forgotten it or suppressed it.
Grrrrrr. But I guess I ought to be pleased that the tumors have all been lazy till recently.
Okay, painkillers have kicked in, and I am ready to go to sleep.
Today I was wondering how the heck a slow-growing LMS got so huge in L5 all of a sudden, so I logged onto the Duke Health Portal and started reading back through my recent CT Scan Reports. (It is pretty cool that I have access to all my reports online.)
Anyway, I knew that the tumor was first mentioned in an MRI report from October 2010 as a tiny spot. There was no need to go back that far in the history to start looking, so instead I focused on the two reports from this year.
In the February 2012 report, there was no mention of L5. In the January 2012 report, there is a note that L5 is "stable." Hmmm. I was about to scroll back to like November 2011 when Dr Reidel called.
(What perfect timing. He is just awesome. I really feel lucky that he is my oncologist.)
Anyway, he had been doing the same exact thing. But he talked directly to the radiologist who prepared the reports and who clarified that although the tumor at L5 was not mentioned in the February report, it was there, and it was "stable."
So, it was stable and tiny in January and February -- and it fricking blew up to eat my L5 by April?! How could that be?
"I thought leiomysarcoma was slow growing," I protested.
Not true, he said. If a tumor is "high grade" then it can be very aggressive. And (finally we get to the unpalatable tidbit) the tumor that they found after my hysterectomy was high grade.
Then it all came back to me. I remembered my first oncologist running through a list of perhaps 5 different measures of seriousness, drawing me a diagram, and explaining that the tumor they found scored pretty badly on every single measure. Definitely high grade. I guess I knew that but had forgotten it or suppressed it.
Grrrrrr. But I guess I ought to be pleased that the tumors have all been lazy till recently.
Okay, painkillers have kicked in, and I am ready to go to sleep.
Monday, April 23, 2012
Be Careful What You Ask For
For years, I have been asking for a little surgery instead of chemo, chemo, and more chemo.
Now, I am getting surgery. Big surgery. Double surgery.
Today we saw the tumor at L5. It has basically eaten away all my precious little L5 vertebrate. They are going to have to scoop out the mess, put in a cage to replace L5, fill the cage with bits of bone from a cadaver, and then come in 5 days later in a second surgery to put in a metal rod screwed to L2, L3, L4, and the sacr-something down at the bottom so that everything is nice and secure for my long happy future.
Surgery is next Friday, May 4.
It's actually not a bad double surgery, not terribly technically challenging, which is nice.
But the tumor is insane. Radiation is sort of off the table because it would take a huge dose, and I already got quite a big dose 3 years ago.
Dr Jaikumar was pretty clear that we can't just leave it alone and hope for the best. Why wait till I fall down paralyzed in 3 months before having the surgery? Better to have it now while I am still in okay shape.
I am so exhausted. I would be asleep, but my right leg is killing me. But I have to go to sleep so I can get up early and go back to UNC to meet my vascular surgeon, Dr Ford. Oh, and have a CT Scan to guage the density of the bones where the screws will go in. Another fun day.
Plus, this evening I sent off mail to work letting them know that the worst case scenario is me out of work for more than 6 weeks. Good thing I work at the best company on the planet.
Somebody remind me to ask whether they can test removed tumor bits to make sure that it is leiomyosarcoma. It's just grown so quickly; LMS is more slow growing, or so I thought. Maybe it's something else. Maybe if they can identify it as something else, they will say "Oh, XYZ chemo will kill off any little redisidual cells that escaped!" On that happy note, I will go to bed now.
Now, I am getting surgery. Big surgery. Double surgery.
Today we saw the tumor at L5. It has basically eaten away all my precious little L5 vertebrate. They are going to have to scoop out the mess, put in a cage to replace L5, fill the cage with bits of bone from a cadaver, and then come in 5 days later in a second surgery to put in a metal rod screwed to L2, L3, L4, and the sacr-something down at the bottom so that everything is nice and secure for my long happy future.
Surgery is next Friday, May 4.
It's actually not a bad double surgery, not terribly technically challenging, which is nice.
But the tumor is insane. Radiation is sort of off the table because it would take a huge dose, and I already got quite a big dose 3 years ago.
Dr Jaikumar was pretty clear that we can't just leave it alone and hope for the best. Why wait till I fall down paralyzed in 3 months before having the surgery? Better to have it now while I am still in okay shape.
I am so exhausted. I would be asleep, but my right leg is killing me. But I have to go to sleep so I can get up early and go back to UNC to meet my vascular surgeon, Dr Ford. Oh, and have a CT Scan to guage the density of the bones where the screws will go in. Another fun day.
Plus, this evening I sent off mail to work letting them know that the worst case scenario is me out of work for more than 6 weeks. Good thing I work at the best company on the planet.
+ + + + +
Somebody remind me to ask whether they can test removed tumor bits to make sure that it is leiomyosarcoma. It's just grown so quickly; LMS is more slow growing, or so I thought. Maybe it's something else. Maybe if they can identify it as something else, they will say "Oh, XYZ chemo will kill off any little redisidual cells that escaped!" On that happy note, I will go to bed now.
Being Mocked Bad
Lou and Brent are driving me to UNC, and they are mocking my accent pretty bad.
It started when I asked Lou to give me my cell phone, which was in the front seat connected to the chah-jah.
(charger)
I gave myself a pep talk this morning to listen with an open mind and just try to trust that the experts will know what to do with me.
I would really really like to keep being about to walk!
Sent from my Verizon Wireless Phone
It started when I asked Lou to give me my cell phone, which was in the front seat connected to the chah-jah.
(charger)
I gave myself a pep talk this morning to listen with an open mind and just try to trust that the experts will know what to do with me.
I would really really like to keep being about to walk!
Sent from my Verizon Wireless Phone
Sunday, April 22, 2012
Sugar Free Me
Have I mentioned the diabetes much? Probably not.
The clinical trial made me diabetic. The consent paperwork warned that that might happen. It's an okay side effect, as long as it's temporary! Sure helps to keep me on a food plan, counting carbs and seeing the black-and-white results in blood sugar readings.
While I was in the hospital, my blood sugars went crazy. One mid-morning reading was 450. I think 120 might be a normal post-breakfast reading. The nurse looked at me askance because we had just come back from Starbucks. But no frappuchino for me!
The crazy high numbers were being caused by the steroids that the docs were using to reduce the inflammation and pain. I like not being in pain. Who doesn't, right? I am currently getting about half the dose of steroids at home, with about half the reduction in pain that I enjoyed in the hospital.
In the hospital, the nurses gave me fast-acting insulin injections after meals, plus one slow-acting injection at bedtime. Now that I am home, I am taking a pill in the morning -- and giving myself a whopping big slow-acting insulin injection every night. It's called Lantus.
I am not a complete newbie to injections, I guess. Years ago, I gave my cat Spike insulin jections with no trouble. When Lou had surgery, I gave him blood thinner injections without blinking an eye. During Gem/Tax chemo, I gave myself Neulasta shots, which stung and left bruises on my thighs and required a lot of psyching up beforehand.
The first night at home, when I gave myself the Lantus shot, it was unpleasant and left me feeling kind of shakey emotionally, like this was too much to ask. But then the next night, it was fine. It wasn't a joy, nothing to look forward to, but fine. I can do it.
Well... Lou is upstairs working. Because it's raining, he has Bailey locked up with him in the office, to restrict her from running in an out all day tracking mud into the house. I am (shhh don't tell) ironing again. In a couple of hours, my friend Carol will drive me to UNC for that MRI.
The clinical trial made me diabetic. The consent paperwork warned that that might happen. It's an okay side effect, as long as it's temporary! Sure helps to keep me on a food plan, counting carbs and seeing the black-and-white results in blood sugar readings.
While I was in the hospital, my blood sugars went crazy. One mid-morning reading was 450. I think 120 might be a normal post-breakfast reading. The nurse looked at me askance because we had just come back from Starbucks. But no frappuchino for me!
The crazy high numbers were being caused by the steroids that the docs were using to reduce the inflammation and pain. I like not being in pain. Who doesn't, right? I am currently getting about half the dose of steroids at home, with about half the reduction in pain that I enjoyed in the hospital.
In the hospital, the nurses gave me fast-acting insulin injections after meals, plus one slow-acting injection at bedtime. Now that I am home, I am taking a pill in the morning -- and giving myself a whopping big slow-acting insulin injection every night. It's called Lantus.
I am not a complete newbie to injections, I guess. Years ago, I gave my cat Spike insulin jections with no trouble. When Lou had surgery, I gave him blood thinner injections without blinking an eye. During Gem/Tax chemo, I gave myself Neulasta shots, which stung and left bruises on my thighs and required a lot of psyching up beforehand.
The first night at home, when I gave myself the Lantus shot, it was unpleasant and left me feeling kind of shakey emotionally, like this was too much to ask. But then the next night, it was fine. It wasn't a joy, nothing to look forward to, but fine. I can do it.
Well... Lou is upstairs working. Because it's raining, he has Bailey locked up with him in the office, to restrict her from running in an out all day tracking mud into the house. I am (shhh don't tell) ironing again. In a couple of hours, my friend Carol will drive me to UNC for that MRI.
Saturday, April 21, 2012
Midnight Ironing
When they discharged me from the hospital, the nurse said NO LAUNDRY. But she doesn't know me...
Last night, I had a really hard time sleeping. I was fully medicated, and yet there was just enough pain to keep me from doing anything except dozing off fitfully.
So around 12:30, I got up and took one more painkiller (as prescribed). While waiting for it to kick in, I watched Doc Martin and ironed a lot of shirts of Lou's that I have been holding hostage here in my office. Very satisfying.
At 2:00, I finallly felt pain-free and sleepy, so I went to bed. I got in an excellent 6.5 hours of sleep. And then I woke up feeling surprisingly cheerful.
(Yesterday evening, on the couch, Lou and I had a bit of a tearful summary of the week behind and the week ahead. You can't hear things like "paralysis" and "incontinence" from various doctors without getting bummed and fearful. But it was a good thing to let it all out, and I think we both felt better afterward.)
Anyway, I really must have a mutant cheerfulness gene, because this morning I woke up with a smile. I am not putting any pressure on myself to keep it in place, though. My mood is what it is.
Our plans for today are pretty awesome. Every day, I seem to have a window of like 5 hours where I am functional. So, we are headed to DPAC to see Bring It On with two friends from the neighborhood. Don't worry, I am not driving. Cannot drive on painkillers.
Not being able to drive on painkillers is making me a bit worried about work. I suppose that I will be able to work a half days from home, so there would be no commuting. Do you think it would be bad to try to work on painkillers because I might mess things up? But I do not feel loopy. I am sure that I am lucid. The "no driving" restriction is a liability issue. What if I get into a fender bender and it is revealed that I am on painkillers? That would be bad, even if the painkillers did not cause the fender bender. Plus, honestly, when I run out of energy, there is no way for me to drive home.
I guess it is silly to worry about work until Monday, when we decide what is going to happen (traditional surgery or CyberKnife surgery).
Last night, I had a really hard time sleeping. I was fully medicated, and yet there was just enough pain to keep me from doing anything except dozing off fitfully.
So around 12:30, I got up and took one more painkiller (as prescribed). While waiting for it to kick in, I watched Doc Martin and ironed a lot of shirts of Lou's that I have been holding hostage here in my office. Very satisfying.
At 2:00, I finallly felt pain-free and sleepy, so I went to bed. I got in an excellent 6.5 hours of sleep. And then I woke up feeling surprisingly cheerful.
(Yesterday evening, on the couch, Lou and I had a bit of a tearful summary of the week behind and the week ahead. You can't hear things like "paralysis" and "incontinence" from various doctors without getting bummed and fearful. But it was a good thing to let it all out, and I think we both felt better afterward.)
Anyway, I really must have a mutant cheerfulness gene, because this morning I woke up with a smile. I am not putting any pressure on myself to keep it in place, though. My mood is what it is.
Our plans for today are pretty awesome. Every day, I seem to have a window of like 5 hours where I am functional. So, we are headed to DPAC to see Bring It On with two friends from the neighborhood. Don't worry, I am not driving. Cannot drive on painkillers.
Not being able to drive on painkillers is making me a bit worried about work. I suppose that I will be able to work a half days from home, so there would be no commuting. Do you think it would be bad to try to work on painkillers because I might mess things up? But I do not feel loopy. I am sure that I am lucid. The "no driving" restriction is a liability issue. What if I get into a fender bender and it is revealed that I am on painkillers? That would be bad, even if the painkillers did not cause the fender bender. Plus, honestly, when I run out of energy, there is no way for me to drive home.
I guess it is silly to worry about work until Monday, when we decide what is going to happen (traditional surgery or CyberKnife surgery).
Friday, April 20, 2012
Disappointing Day
The disc we brought from Duke did not contain the MRI so Dr Morris could not get very far with me today.
That was a huge bummer, to get all the way out there with Robert driving, and not have what we need.
They tried to get it via email but only parts came thru, and not the lumbar part we needed.
So I have to go back on Sunday for an MRI at UNC.
Then on Monday, I go back for an appointment with Dr Jaikumar, who determines whether surgery is a better option.
Even tho Duke said no to surgery, yes to radiation, UNC has to come to that decision on its own.
Its not a trivial decision to go with radiation again because the risk of complications might rise because we're back in the same delicate area.
I got home and slept for hours. Got no stamina.
Sent from my Verizon Wireless Phone
That was a huge bummer, to get all the way out there with Robert driving, and not have what we need.
They tried to get it via email but only parts came thru, and not the lumbar part we needed.
So I have to go back on Sunday for an MRI at UNC.
Then on Monday, I go back for an appointment with Dr Jaikumar, who determines whether surgery is a better option.
Even tho Duke said no to surgery, yes to radiation, UNC has to come to that decision on its own.
Its not a trivial decision to go with radiation again because the risk of complications might rise because we're back in the same delicate area.
I got home and slept for hours. Got no stamina.
Sent from my Verizon Wireless Phone
Hello workplace
We are driving to UNC and just passed the exit for my workplace.
We are talking about Robert's upcoming Europe trip. It sounds fabulous.
That's all for now.
Sent from my Verizon Wireless Phone
We are talking about Robert's upcoming Europe trip. It sounds fabulous.
That's all for now.
Sent from my Verizon Wireless Phone
Thursday, April 19, 2012
Tough Day
Whew, glad this day is over.
Being on half the steroids left me in a lotta back pain. But it was still great to be home.
The nurse, when she discharged me, told me NO LAUNDRY and only enough ironing for one outfit. Broke my heart at the time, but turns out I didn't have the energy for anything.
Tomorrow Robert drives us to UNC for an appointment with Dr Morris. That is a long drive, and I really appreciate getting to be the passenger.
Nighty night!
Sent from my Verizon Wireless Phone
Wednesday, April 18, 2012
Get Me Outa Here
They promise that they are in the process of letting me go home!
I have an appointment with fabulous Dr David Morris at UNC for this Friday morning. At first they were telling the radiation oncology Nurse Practicioner they couldn't see me till May 4, but she explained that I am in the hospital here with symptoms and need to be seen sooner... and magically a cancellation appeared in the schedule for this Friday AM.
The only thing we are trying to figure out is what to do at home about my blood sugar, which is high because of the steriods.
My friend Geogia in Australia reminded me how lucky I am to have access to CyberKnife, which is high-tech pinpoint-accuracy radiation. I am super lucky, especially since I am getting to go back for a second helping. (If you want to know more, scroll down to the end of this home page for the SEARCH field and enter CyberKnife -- or go look at the June/July 2009 posts.)
Mo dropped Lou off here early this morning on his way to work. Thanks, Mo!
I'll be back in the office tomorrow. Funny thing is, all the high-pressure tasks were on Tuesday, and I missed them. My coworkers are the best, and I am sure it all went smoothly without little ole me.
Thanks so much, everyone, for the comments here and in email and on Facebook. It has been a big boost to read all your good wishes. I love the idea that we are bombarding heaven with prayers for me.
I have an appointment with fabulous Dr David Morris at UNC for this Friday morning. At first they were telling the radiation oncology Nurse Practicioner they couldn't see me till May 4, but she explained that I am in the hospital here with symptoms and need to be seen sooner... and magically a cancellation appeared in the schedule for this Friday AM.
The only thing we are trying to figure out is what to do at home about my blood sugar, which is high because of the steriods.
My friend Geogia in Australia reminded me how lucky I am to have access to CyberKnife, which is high-tech pinpoint-accuracy radiation. I am super lucky, especially since I am getting to go back for a second helping. (If you want to know more, scroll down to the end of this home page for the SEARCH field and enter CyberKnife -- or go look at the June/July 2009 posts.)
Mo dropped Lou off here early this morning on his way to work. Thanks, Mo!
I'll be back in the office tomorrow. Funny thing is, all the high-pressure tasks were on Tuesday, and I missed them. My coworkers are the best, and I am sure it all went smoothly without little ole me.
Thanks so much, everyone, for the comments here and in email and on Facebook. It has been a big boost to read all your good wishes. I love the idea that we are bombarding heaven with prayers for me.
Tuesday, April 17, 2012
More CyberKnife, Please
An amazing thing just happened.
I met with the Director of Radiation Oncology here at Duke, who was really nice. After an examination and a discussion, he suggested that I go back to Dr David Morris at UNC for more CyberKnife!
Because the two sites (L4 and L5) are so close, it is important to know exactly what was done in 2009 as they plan what to do now. So the best thing for me is to go back.
I am pretty happy about that. Everyone here at Duke is awesome, and I would be happy for them to do whatever they want to me --but I also really liked Dr David Morris and know that he did excellent work on me in 2009. So I am thrilled to be going back, if he'll have me, hee hee, as if he might go, "Karen Ross?! Oh no, not again!"
I met with the Director of Radiation Oncology here at Duke, who was really nice. After an examination and a discussion, he suggested that I go back to Dr David Morris at UNC for more CyberKnife!
Because the two sites (L4 and L5) are so close, it is important to know exactly what was done in 2009 as they plan what to do now. So the best thing for me is to go back.
I am pretty happy about that. Everyone here at Duke is awesome, and I would be happy for them to do whatever they want to me --but I also really liked Dr David Morris and know that he did excellent work on me in 2009. So I am thrilled to be going back, if he'll have me, hee hee, as if he might go, "Karen Ross?! Oh no, not again!"
No Surgery
The orthopedic surgery guy came in and did an extensive and somewhat embarassing exam. I am not going to go into details into what he was interested in, although I will say the exam involved rubber gloves, a straw, a toothpick, and a pair of scissors.
Anyway, no surgery for me!
There is a whole list of awful symptoms that have to appear for surgery, and I have none of them. I was really relieved. The minute I become incontinent or fall down, though, I can get surgery.
So it's just a matter of waiting to hear from the radiation people. A radiation Nurse Practicioner came in already to do a preliminary exam.
Anyway, no surgery for me!
There is a whole list of awful symptoms that have to appear for surgery, and I have none of them. I was really relieved. The minute I become incontinent or fall down, though, I can get surgery.
So it's just a matter of waiting to hear from the radiation people. A radiation Nurse Practicioner came in already to do a preliminary exam.
Not About To Fall Down
The good news is, I am not about to fall down and be paralyzed. It's not that urgently terrible.
But the tiny spot on L5 is now a tumor pressing against some nerves, which is probably causing all the pain.
Some time today, a surgeon and a radiation person will comes see me, and then they will discuss the situation with the entire team, and then the team will propose a solution. The thing is, they have to do something or else at some point I could fall down parayzed.
I am stuck here at Duke all day and maybe tonight, depending how long it takes to decide what will be done.
But, I am okay. I am drugged up so that I am in no pain at all.
But the tiny spot on L5 is now a tumor pressing against some nerves, which is probably causing all the pain.
Some time today, a surgeon and a radiation person will comes see me, and then they will discuss the situation with the entire team, and then the team will propose a solution. The thing is, they have to do something or else at some point I could fall down parayzed.
I am stuck here at Duke all day and maybe tonight, depending how long it takes to decide what will be done.
But, I am okay. I am drugged up so that I am in no pain at all.
Monday, April 16, 2012
Admitted to Hospital
Oh, man, today did not go as planned.
I guess my CT Scan looked pretty bad, because the radiologist immediately called Dr R. He was especially worried about the tumor next to my spine, the one we irradiated in 2009. It grew.
Dr R called my home number looking for me. He updated Lou, who then told him about all my recent back pain.
Back pain + tumor growth near spine = concern for spinal cord
Dr R found me outside the lab on Floor 0 of the new cancer center. I was waiting for my EKG and planning to go back to the office.
Dr R said we needed an MRI ASAP to make sure the spine isn't being compressed because that can cause paralysis.
Long story short, i am in a johnny, in a hospital bed, waiting for pain meds and the MRI.
Lou is with me! John next door drove him up here lickety split.
Thank God Lou is here.
I just sent email to my manager at work because 3 of my books are supposed to be published tomorrow, and I probably won't be there to do all the last minute tasks.
Sent from my Verizon Wireless Phone
I guess my CT Scan looked pretty bad, because the radiologist immediately called Dr R. He was especially worried about the tumor next to my spine, the one we irradiated in 2009. It grew.
Dr R called my home number looking for me. He updated Lou, who then told him about all my recent back pain.
Back pain + tumor growth near spine = concern for spinal cord
Dr R found me outside the lab on Floor 0 of the new cancer center. I was waiting for my EKG and planning to go back to the office.
Dr R said we needed an MRI ASAP to make sure the spine isn't being compressed because that can cause paralysis.
Long story short, i am in a johnny, in a hospital bed, waiting for pain meds and the MRI.
Lou is with me! John next door drove him up here lickety split.
Thank God Lou is here.
I just sent email to my manager at work because 3 of my books are supposed to be published tomorrow, and I probably won't be there to do all the last minute tasks.
Sent from my Verizon Wireless Phone
Tomorrow is Scan Day
Here I am, awake in the middle of the night, with pain in my back and right leg. I was dreaming that the pain would go away if only I got the grammar correct in some document about the pain. Crazy. But I just took something and hope that it kicks in soon so I can get some sleep. Got to wake up pretty early tomorrow.
Actually, this entire week is going to be completely nuts.
Tomorrow (oooh, later today, since it's after midnight) Lou has his annual physical. He's got fasting bloodwork, which means he'll be a bit grumpy and I need to remember not to chatter too much on the drive to the doctor. Then I zoom to work for a short time before heading to Duke for my CT Scan. I'll be getting this scan in the awesome new cancer center, which I am looking forward to, because I heard that you get to wait in your own lovely little room, instead of in a big waiting room.
This is a big important scan. It will show whether the two clinical trial chemo drugs are working. It will determine whether I get to keep on this relatively easy chemo, or more on to something else. Dr R says if there are new tumors, then I am off the clinical trial. I stay on the clinical trial with any other results. Like, if we see a little growth, that would be fine. Significant shrinkage would be excellent, but let's not get our hopes up.
On Tuesday, I zip back to Duke first thing for my own fasting bloodwork. Then work work work, followed by Bring It On at the DPAC. This is a play about competitive cheerleading, where evil rich girls steal the fabulous routines of virtuous poor girls, or something like that. Usually, we see plays on Saturday afternoon, but we had to switch the tickets because we're headed to Massachusetts this weekend.
On Wednesday, Lou and I go to Duke to hear the CT Scan results from Dr R, followed by chemo as usual (unless I get kicked off the trial).
On Thursday, I see a Dr Chris Lin at Cary Orthopedic. He's a spine specialist, and I hope that he can help me with all this back pain. Seven months I have been hoping that it would just go away. That's long enough.
On Friday, we fly to Massachusetts for a memorial for Lou's old and wonderful friend Kevin Little, who passed away last week after a long and terrible illness. When I met Lou in 1990, he was working at a tiny software company called Pacer with Kevin and a bunch of totally awesome people. Those are the people getting together this weekend for the memorial. Kevin was brilliant and funny and warm and expansive. He was a gifted raconteur, and I remember hanging on his every word as he told stories at these Pacer dinners over the years.
Actually, this entire week is going to be completely nuts.
Tomorrow (oooh, later today, since it's after midnight) Lou has his annual physical. He's got fasting bloodwork, which means he'll be a bit grumpy and I need to remember not to chatter too much on the drive to the doctor. Then I zoom to work for a short time before heading to Duke for my CT Scan. I'll be getting this scan in the awesome new cancer center, which I am looking forward to, because I heard that you get to wait in your own lovely little room, instead of in a big waiting room.
This is a big important scan. It will show whether the two clinical trial chemo drugs are working. It will determine whether I get to keep on this relatively easy chemo, or more on to something else. Dr R says if there are new tumors, then I am off the clinical trial. I stay on the clinical trial with any other results. Like, if we see a little growth, that would be fine. Significant shrinkage would be excellent, but let's not get our hopes up.
On Tuesday, I zip back to Duke first thing for my own fasting bloodwork. Then work work work, followed by Bring It On at the DPAC. This is a play about competitive cheerleading, where evil rich girls steal the fabulous routines of virtuous poor girls, or something like that. Usually, we see plays on Saturday afternoon, but we had to switch the tickets because we're headed to Massachusetts this weekend.
On Wednesday, Lou and I go to Duke to hear the CT Scan results from Dr R, followed by chemo as usual (unless I get kicked off the trial).
On Thursday, I see a Dr Chris Lin at Cary Orthopedic. He's a spine specialist, and I hope that he can help me with all this back pain. Seven months I have been hoping that it would just go away. That's long enough.
On Friday, we fly to Massachusetts for a memorial for Lou's old and wonderful friend Kevin Little, who passed away last week after a long and terrible illness. When I met Lou in 1990, he was working at a tiny software company called Pacer with Kevin and a bunch of totally awesome people. Those are the people getting together this weekend for the memorial. Kevin was brilliant and funny and warm and expansive. He was a gifted raconteur, and I remember hanging on his every word as he told stories at these Pacer dinners over the years.
Tuesday, April 10, 2012
Bye-Bye Boo-Boo!
About 36 hours of wax is all it took to reduce my tongue boo-boo to a minor ouchy. Amazing. I still have the wax on, though, because I don't want the boo-boo to flare back up.
I also have a red spot on the roof of my mouth. I can't remember what the heck I was doing, but while I was driving to work this morning, I glimpsed the roof of my mouth in the rear-view mirror and saw an alarming red spot. Honestly, what could I have been doing? Admiring my teeth? (Four years of braces!) Yawning? (I got very little sleep.) Laughing at something on the radio? (I hope I don't guffaw like a hyena.)
I am enjoying using words like "boo-boo" and flinging hyphens about at will, because for the last few days I have been incorporating edits into my documents here at work, and my editor is making me delete hyphens and commas and other punctuation that I am rather attached to.
The pain in my back and right leg kept me awake most of the night, even with all the nerve-pain blocking drugs that I am on. That was a real bummer. I wonder why I feel so chipper. I ought to be dragging. Perhaps later I will just deflate and crumple.
Jeff, I thought about calling you in the middle of the night to chat, but since you just got a new job, I figured you needed your sleep.
I also have a red spot on the roof of my mouth. I can't remember what the heck I was doing, but while I was driving to work this morning, I glimpsed the roof of my mouth in the rear-view mirror and saw an alarming red spot. Honestly, what could I have been doing? Admiring my teeth? (Four years of braces!) Yawning? (I got very little sleep.) Laughing at something on the radio? (I hope I don't guffaw like a hyena.)
I am enjoying using words like "boo-boo" and flinging hyphens about at will, because for the last few days I have been incorporating edits into my documents here at work, and my editor is making me delete hyphens and commas and other punctuation that I am rather attached to.
The pain in my back and right leg kept me awake most of the night, even with all the nerve-pain blocking drugs that I am on. That was a real bummer. I wonder why I feel so chipper. I ought to be dragging. Perhaps later I will just deflate and crumple.
Jeff, I thought about calling you in the middle of the night to chat, but since you just got a new job, I figured you needed your sleep.
Monday, April 9, 2012
Right and Wrong
Chemo was fine last Thursday.
I brought two boxes of Girl Scout cookies to Duke. I gave one box to the phlebotomists and got a hug. I don't think those poor folks get a lot of love from patients. It's hard to be charmed by the person who jabs a needle into your arm, unless they are very very good at what they do. The other box of Girl Scout cookies went to my chemo nurse, Lynn, who is awesome.
Everything went really well. My port performed magnificently. Afterward, on the way home, Lou and I stopped at the Dim Sum House (yum) for a quick lunch. When we got home, I collapsed on the couch.
The chemo made me really tired. I was completely wiped out for most of the weekend. I slept a lot. I didn't even go to work on Friday, because I was so tired and listless. Me, listless! Hard to believe.
On top of the chemo exhaustion, my back started killing me again on Thursday. The shooting pains, the inexplicable pain near my ankle, the inability to lie down at night -- it was all back just as bad as in December -- but now in my right leg.
I was shocked that my right leg would give me so much trouble. My left leg, that betrayer, I am never surprised by what it does.
I tried to work out the tense muscles like Jaime does in physical therapy, and I ended up with a bunch of bruises. I guess having PT done to you does not actually qualify you to do PT. Imagine that.
So, this back pain. I have been struggling since October with this back pain. That is seven months. My goodness. (For about three months, though, the pain has been under control.) But still, that is too long.
Oh, and I have a boo boo on my tongue. This chemo causes dry mouth and possibly mouth sores. For me, when my mouth is dry, there is one spot where my tongue rubs against a sharp inner edge of a molar and gets sore... This weekend it went from sore to a big white inflamed spot. At the drugstore, I found the wax that kids put on their braces, and that has made a huge improvement because my poor tongue is resting on a smooth surface instead of a sharp one. I wonder how long this will take to heal?
I accidentally ate a blob of wax when I took some pills last night. I was sure that the wax would stick to my teeth! Nope. It washed right down with the pills. I hope there are no carbs in wax. I am temporarily diabetic now, after all.
I brought two boxes of Girl Scout cookies to Duke. I gave one box to the phlebotomists and got a hug. I don't think those poor folks get a lot of love from patients. It's hard to be charmed by the person who jabs a needle into your arm, unless they are very very good at what they do. The other box of Girl Scout cookies went to my chemo nurse, Lynn, who is awesome.
Everything went really well. My port performed magnificently. Afterward, on the way home, Lou and I stopped at the Dim Sum House (yum) for a quick lunch. When we got home, I collapsed on the couch.
The chemo made me really tired. I was completely wiped out for most of the weekend. I slept a lot. I didn't even go to work on Friday, because I was so tired and listless. Me, listless! Hard to believe.
On top of the chemo exhaustion, my back started killing me again on Thursday. The shooting pains, the inexplicable pain near my ankle, the inability to lie down at night -- it was all back just as bad as in December -- but now in my right leg.
I was shocked that my right leg would give me so much trouble. My left leg, that betrayer, I am never surprised by what it does.
I tried to work out the tense muscles like Jaime does in physical therapy, and I ended up with a bunch of bruises. I guess having PT done to you does not actually qualify you to do PT. Imagine that.
So, this back pain. I have been struggling since October with this back pain. That is seven months. My goodness. (For about three months, though, the pain has been under control.) But still, that is too long.
Oh, and I have a boo boo on my tongue. This chemo causes dry mouth and possibly mouth sores. For me, when my mouth is dry, there is one spot where my tongue rubs against a sharp inner edge of a molar and gets sore... This weekend it went from sore to a big white inflamed spot. At the drugstore, I found the wax that kids put on their braces, and that has made a huge improvement because my poor tongue is resting on a smooth surface instead of a sharp one. I wonder how long this will take to heal?
I accidentally ate a blob of wax when I took some pills last night. I was sure that the wax would stick to my teeth! Nope. It washed right down with the pills. I hope there are no carbs in wax. I am temporarily diabetic now, after all.
Wednesday, April 4, 2012
Flash from the Past
Do you want to see an old picture of me bald?
I just went to Being Cancer, which is a web site that lists lots of cancer blogs. My picture is on the sarcoma page! Sort of shocked me, seeing myself all bald and grinning and dressed in Carribbean cruise type clothes.
Here is the link:
http://beingcancer.net/cancer-blogs-lists/sarcomas/
At some point they will swap me out, but for now, they are using my picture. Too cool. I am the face of the sarcoma survivor.
I just went to Being Cancer, which is a web site that lists lots of cancer blogs. My picture is on the sarcoma page! Sort of shocked me, seeing myself all bald and grinning and dressed in Carribbean cruise type clothes.
Here is the link:
http://beingcancer.net/cancer-blogs-lists/sarcomas/
At some point they will swap me out, but for now, they are using my picture. Too cool. I am the face of the sarcoma survivor.
She Ate Another One!
Miss Bailey ate my new round hairbrush, too. Good thing this dog is cute, that's all I have to say.
Our dog expert friend Mo thinks that I need to go to puppy school with Bailey. I suggested sending her off to boarding school instead. But no. Apparently the problem is with me. I am the one who needs training. And another new round hairbrush.
Despite having no round hairbrush, I somehow managed to get my hair freaky fluffy again today. If you are in my vicinity, please do not stare.
How are things going? I am hungry and tired.
The chemo is sapping my energy, which is really a very mild and almost pleasant side effect, when you compare it to barfing. Plus, I did not sleep long enough last night. My back hurt just enough to keep me awake for a long time. Luckily, I had physical therapy this morning, which helped tremendously. Of course, I had to wake up super early to get to that appointment on time.
But why am I hungry? This whole diabetic thing, counting carbs and being good and checking blood sugar levels. It's actually working out great because I have lost a few pounds. And lunch is only, let's see, three hours from now...
Tomorrow is chemo day. I get the infusion in the morning and then take a pill at night. I plan to spend the afternoon on the couch watching Season 5 of Doc Martin, which just arrived in the mail. Yippee, yippee, yippee!
Our dog expert friend Mo thinks that I need to go to puppy school with Bailey. I suggested sending her off to boarding school instead. But no. Apparently the problem is with me. I am the one who needs training. And another new round hairbrush.
Despite having no round hairbrush, I somehow managed to get my hair freaky fluffy again today. If you are in my vicinity, please do not stare.
How are things going? I am hungry and tired.
The chemo is sapping my energy, which is really a very mild and almost pleasant side effect, when you compare it to barfing. Plus, I did not sleep long enough last night. My back hurt just enough to keep me awake for a long time. Luckily, I had physical therapy this morning, which helped tremendously. Of course, I had to wake up super early to get to that appointment on time.
But why am I hungry? This whole diabetic thing, counting carbs and being good and checking blood sugar levels. It's actually working out great because I have lost a few pounds. And lunch is only, let's see, three hours from now...
Tomorrow is chemo day. I get the infusion in the morning and then take a pill at night. I plan to spend the afternoon on the couch watching Season 5 of Doc Martin, which just arrived in the mail. Yippee, yippee, yippee!
Monday, April 2, 2012
Bad Hair Day
On Friday, during my haircut, I asked for help styling my hair. Three years with little or no hair made me forget the basics of blowdrying, plus I threw away all my hair product -- and Bailey just ate my round hairbrush.
So Renee at EnV Color Bar in Apex showed me how to dry my roots first to gain height, and then she sold me a spray bottle of this magical powerful stuff that makes your hair defy gravity.
I did okay on Saturday and Sunday, but this morning, it went horribly wrong, and I ended up with a lot of hair standing straight up, next to some hair flopped really flat. Nightmare. But I was already running late and could not spare the time to stick my head under the faucet and start over.
So I found myself driving to work, catching glimpses of my freaky 'do in the rear-view mirror, and feeling mighty bad. Then I remembered all the days I had to wear a hat -- or worse, a wig -- because I had no hair.
No day with hair can be as bad a hair day as a day with no hair.
(That sentence makes my head spin, but it lifted my heart.)
3:45PM Update: my hair has settled down, and it does not look as bad as it did at 10:00AM.
So Renee at EnV Color Bar in Apex showed me how to dry my roots first to gain height, and then she sold me a spray bottle of this magical powerful stuff that makes your hair defy gravity.
I did okay on Saturday and Sunday, but this morning, it went horribly wrong, and I ended up with a lot of hair standing straight up, next to some hair flopped really flat. Nightmare. But I was already running late and could not spare the time to stick my head under the faucet and start over.
So I found myself driving to work, catching glimpses of my freaky 'do in the rear-view mirror, and feeling mighty bad. Then I remembered all the days I had to wear a hat -- or worse, a wig -- because I had no hair.
No day with hair can be as bad a hair day as a day with no hair.
(That sentence makes my head spin, but it lifted my heart.)
3:45PM Update: my hair has settled down, and it does not look as bad as it did at 10:00AM.
Subscribe to:
Posts (Atom)