So, last Friday I met with the radiation oncologist to have a planning meeting for the radiation therapy. We had a few questions going in, and more of them (as always) coming out.
The pathologist's report didn't discuss margins on the craniotomy. Usually, they like to get a two-inch margin around the outside of the tumor. This tumor, it turned out, wasn't just a little marble-shaped ball but was rather a kind of "spat" shape. They really didn't get any margin at all out of it, even though they took out a pretty big piece of my skull. (Maybe 4cm x 6cm?) The radiation doc went off to do some planning based on that, and his coming talk with the brain surgeon, and will have a better idea of what to do when I see him next on next Monday.
The upshot of it all is this: radiation is a better idea than ever due to the small margins and my relatively high CEA count. (CEA should be 5 or lower, not 20.) The risks are low, the side effects are minimal, and it is effective at eliminating cancer cell growth in a targeted area. I'm not thrilled at 5 weeks of going there and getting nuked every day, but it will only take 15 minutes of each day and I've done it before.
Here's the really good news, though. I asked the doc if I could take a couple of days off for the AMGA testing, which will be in West Virginia, and he said it would be fine. His words were "Sounds like living, to me!"
Me, too, doc.
Clem
Tuesday, September 29, 2009
Tuesday, September 22, 2009
Hamster in the Microwave
Back to the grindstone. So yesterday was enlightening and informative. We met with the radiation oncologist and discussed where he thought I was, what was happening, and what to do about it.
This particular doc has always been...skeptical...about my chances here. He has tried to be as up front and realistic as he can. I (Clem) appreciate that more than Pam does--she was about to jump down his throat! The good news is this: because there appears to be only a single site of new cancer growth, the odds are still with us that this is just an anomaly and that aggressive treatment will fix it. By "fix", they mean that there will be NED (no evidence of disease) and I can look forward to some long time period before having to worry very much about recurrence.
It seems that there is a pretty reasonable chance that a stray cancer cell got washed into the scalp around the scar by the bleeding that is normal for surgery. The purpose of radiation is to kill any of those things by stopping cells with rapid growth habits around the scar. Cancer cells have that kind of growth, but so do hair follicles. He said it's likely that I won't have my usual head of wavy Fabio hair growing back there, or much hair at all for that matter. I'm trying to decide if I'll do a Yul Brynner or go for the more modern Vin Diesel look. Yeah, any of those guys could easily be confused with me if the lighting was right. *eye roll* I told him that I had a little time, and would trade time for gentleness on my hair. (We're only talking a week extra, here.)
Speaking of time, here's the timeline so far: I'll meet with him this Friday for the radiation planning session. That's where I get tattoos and Sharpie drawings on my head. Next Wednesday we'll start the treatment, and it will run every weekday for about five weeks. Twenty or twenty-five sessions.
Each session will be short and painless--easier than last time. I'll lay face-down on the table and they'll crank up the X-Ray generator and zap the whole scar and a little bit of margin around it. Total time from start to finish: 15 minutes or so. There shouldn't be any problem with side effects on my brain, as neural tissue is very resistant to radiation. (It doesn't grow.) He said the skin will likely get reddish, and maybe kind of pimply for a while, but that will all recover quickly. Hair will probably fall out around the scar, and might re-grow, but probably not.
With that, I should be done with it and on the road.
That's my story, and I'm sticking to it!
Clem
This particular doc has always been...skeptical...about my chances here. He has tried to be as up front and realistic as he can. I (Clem) appreciate that more than Pam does--she was about to jump down his throat! The good news is this: because there appears to be only a single site of new cancer growth, the odds are still with us that this is just an anomaly and that aggressive treatment will fix it. By "fix", they mean that there will be NED (no evidence of disease) and I can look forward to some long time period before having to worry very much about recurrence.
It seems that there is a pretty reasonable chance that a stray cancer cell got washed into the scalp around the scar by the bleeding that is normal for surgery. The purpose of radiation is to kill any of those things by stopping cells with rapid growth habits around the scar. Cancer cells have that kind of growth, but so do hair follicles. He said it's likely that I won't have my usual head of wavy Fabio hair growing back there, or much hair at all for that matter. I'm trying to decide if I'll do a Yul Brynner or go for the more modern Vin Diesel look. Yeah, any of those guys could easily be confused with me if the lighting was right. *eye roll* I told him that I had a little time, and would trade time for gentleness on my hair. (We're only talking a week extra, here.)
Speaking of time, here's the timeline so far: I'll meet with him this Friday for the radiation planning session. That's where I get tattoos and Sharpie drawings on my head. Next Wednesday we'll start the treatment, and it will run every weekday for about five weeks. Twenty or twenty-five sessions.
Each session will be short and painless--easier than last time. I'll lay face-down on the table and they'll crank up the X-Ray generator and zap the whole scar and a little bit of margin around it. Total time from start to finish: 15 minutes or so. There shouldn't be any problem with side effects on my brain, as neural tissue is very resistant to radiation. (It doesn't grow.) He said the skin will likely get reddish, and maybe kind of pimply for a while, but that will all recover quickly. Hair will probably fall out around the scar, and might re-grow, but probably not.
With that, I should be done with it and on the road.
That's my story, and I'm sticking to it!
Clem
Monday, September 14, 2009
20.3 and falling...
Today was nothing but good news! All the prayers, well-wishes, positive energy and good thoughts have paid off. Nearly finished with this chapter, and I am SO eager to get on with the next one. Our dear friend John the Bear from Seattle was here today, on a break from visiting his family. He got to share the news and we were happy to have him to celebrate with in person. He's been a rock and an inspiration for me, with tales far beyond this little story to tell.
The best news: no more chemo. That's over with, done, gone, behind me, and past. Woo hoo! I was thinking of a big "final chemo" party, but this trumps that by a good margin. The oncologist agreed with my wishful thinking of that knot on my head being the last refuge of the last cancer cell on the run from the chemo. Now that last refuge is gone and there's a titanium shield there--chew on that, cancer cell!
The next best news, my CEA marker was something like 20.3 and dropping like a rock. That's down from 80 the last time we checked it. Next time, we fully expect to see something in the 5 range.
It's not all quite over, though. It looks like they'll have me back at the radiation center for a littler insurance on that skull spot. With a few mild zaps they can "sterilize" the area and ensure that no more of those nasty single cells get away. Because it's external to the body (mostly) there shouldn't be too many ugly side effects. We'll meet with the radiation oncologist on Monday and see what he says.
Tomorrow (Tuesday) I'll see the brain surgeon to have the zipper of staples pulled out of my head. With that, his work will be done. I wonder what he'll have to say about that squeaky plate?
More news as it happens, but we're looking for this trip to be downhill from here. I have a life to live and I'm tired of putting up with these shackles of illness. No more pacing the cage...
Clem
The best news: no more chemo. That's over with, done, gone, behind me, and past. Woo hoo! I was thinking of a big "final chemo" party, but this trumps that by a good margin. The oncologist agreed with my wishful thinking of that knot on my head being the last refuge of the last cancer cell on the run from the chemo. Now that last refuge is gone and there's a titanium shield there--chew on that, cancer cell!
The next best news, my CEA marker was something like 20.3 and dropping like a rock. That's down from 80 the last time we checked it. Next time, we fully expect to see something in the 5 range.
It's not all quite over, though. It looks like they'll have me back at the radiation center for a littler insurance on that skull spot. With a few mild zaps they can "sterilize" the area and ensure that no more of those nasty single cells get away. Because it's external to the body (mostly) there shouldn't be too many ugly side effects. We'll meet with the radiation oncologist on Monday and see what he says.
Tomorrow (Tuesday) I'll see the brain surgeon to have the zipper of staples pulled out of my head. With that, his work will be done. I wonder what he'll have to say about that squeaky plate?
More news as it happens, but we're looking for this trip to be downhill from here. I have a life to live and I'm tired of putting up with these shackles of illness. No more pacing the cage...
Clem
Wednesday, September 9, 2009
Bolts and staples
Nothing of substance to report, but here's one interesting thing: in all my experience with long surgical scars, they've always used some glue to hold the incision closed. No bandages, not much scar to show for it.
Imagine my surprise when I remove my turban, and then the layer of 2x2s underneath it to reveal a long, jagged line of big metal staples! All I need now is a bolt or two at my neck to complete the Frankenstein image.
Even better, I think, is the more modern Zombie image. I've taken to shambling around, growling, and suddenly raw human flesh is looking pretty tasty! Grrrrllll...
Feeling a little silly, a little hopped up on one too many goof balls again, and a little tired all at the same time this morning.
So now it's evening, and I'm filling in a couple of blanks. This neurosurgery has been the wildest experience of them all. Even though this was for a bump on my head that was easily visible and felt with the fingers, the surgeon is used to "going in blind" and having all kinds of cues around to show where he should cut. To help with this, they take a special navigational MRI, complete with little green "landing lights" that show up on the scan, providing solid points of reference so the surgeon always stays exactly where he thinks he is with respect to the tumor. Those things looked downright creepy!
Imagine my surprise when I remove my turban, and then the layer of 2x2s underneath it to reveal a long, jagged line of big metal staples! All I need now is a bolt or two at my neck to complete the Frankenstein image.
Even better, I think, is the more modern Zombie image. I've taken to shambling around, growling, and suddenly raw human flesh is looking pretty tasty! Grrrrllll...
Feeling a little silly, a little hopped up on one too many goof balls again, and a little tired all at the same time this morning.
So now it's evening, and I'm filling in a couple of blanks. This neurosurgery has been the wildest experience of them all. Even though this was for a bump on my head that was easily visible and felt with the fingers, the surgeon is used to "going in blind" and having all kinds of cues around to show where he should cut. To help with this, they take a special navigational MRI, complete with little green "landing lights" that show up on the scan, providing solid points of reference so the surgeon always stays exactly where he thinks he is with respect to the tumor. Those things looked downright creepy!
So, of course, I have to put them here for you to feel creepy about, too. What do you think of that? Kara (my daughter) got it immediately, and asked if they would light up if I thought really hard. Stephanie (another daughter) said they were bullshit detectors. That seemed true enough, as they never did light up when I was speaking.
One of the techs there in the prep room wanted some for his own head, to use for Halloween. This could get pretty ugly before it was over, if we kept going down this road!
Tonight, I'm to the point where I'm just about off the Oxycontin "goof balls" and getting by with acetaminophen. They tell me that people abuse these drugs all the time, but it's just not my thing somehow. Like gambling, I just don't get it at all.
Next time I see a doc will be the oncologist on the 14th, then the brain surgeon on the 15th to have the staples pulled. We'll see what kind of answers and progress we can have to report by then, if nothing interesting happens before.
Cheers,
Clem
Monday, September 7, 2009
Home
Clem and I left the hospital yesterday around 1:oo. We were in our bed and sleeping soundly by 2:00. After a 2 hour nap we got up for food and to wash the hospital from out body and clothes. An hour later Clem wanted to play scrabble so he could concentrate on something other than the hole healing in his head and the pain that it was producing. It sucks being beat by a man who was just released from a neurological intensive care unit and is high on pain killers but it is something that I have grown accustom to and it gives him such great pleasure to thrash me.
We called it an early night and slept long and hard waking at intervals attempting to make his head comfortable and telling each other our crazy dreams. At one point Clem mumbles to me that he his is going to go back to sleep and think happy thoughts and hopefully that will produce some happy dreams. I can't even begin to imagine what scenes are playing themselves out in his brain. For some reason I thought of all the animals that live under big heavy rocks and what it must feel like for someone to come along one day and lift it up, look, and then drop it back down. How do all the animals continue on with life wondering if that will happen again and then I visualize Clem's brain experiencing those same questions as the surgeon closes up the hole in his head. Exhaustion can sometimes be like a really weird acid trip!!
Anyway, we are up and about this morning. Clem is still weak and struggling with both nausea and pain. I think the pain pills are producing the nausea but they are NECESSARY at this point in time so we are taking it easy with loud noise, bright lights, and sudden moves. We have such an amazing house for resting and this morning we just laid in the bed watching the green leaves gently flutter on the trees outside our window attempting to let the negative images of being in the hospital once again fly off in the breeze.
We called it an early night and slept long and hard waking at intervals attempting to make his head comfortable and telling each other our crazy dreams. At one point Clem mumbles to me that he his is going to go back to sleep and think happy thoughts and hopefully that will produce some happy dreams. I can't even begin to imagine what scenes are playing themselves out in his brain. For some reason I thought of all the animals that live under big heavy rocks and what it must feel like for someone to come along one day and lift it up, look, and then drop it back down. How do all the animals continue on with life wondering if that will happen again and then I visualize Clem's brain experiencing those same questions as the surgeon closes up the hole in his head. Exhaustion can sometimes be like a really weird acid trip!!
Anyway, we are up and about this morning. Clem is still weak and struggling with both nausea and pain. I think the pain pills are producing the nausea but they are NECESSARY at this point in time so we are taking it easy with loud noise, bright lights, and sudden moves. We have such an amazing house for resting and this morning we just laid in the bed watching the green leaves gently flutter on the trees outside our window attempting to let the negative images of being in the hospital once again fly off in the breeze.
WD-40, please!
Home at last! It just feels better sleeping in my own bed, even if I'm up every few hours re-upping my drugs. (Is that a real word these days?)
The strangest thing happened in the night. I heard a strange squeaking sound, so I rolled over to see if it would go away. It got louder. As near as I can tell, the plate in my head is squeaking! It makes a tiny squeak sound when my heart beats. Pam put her ear on my skull and said she could hear it, too. Maybe it just needs a little WD-40 on it. Or it could be that the skull will grow back around the titanium mesh, and thus stop squeaking that way. It only happens in a few sleeping positions, so I guess it won't be a bother to me.
Aside from that, I'm on the "normal" recovery track. I hurt quite a bit when the drugs wear off, and I sleep quite a bit when the drugs kick in. The other times I feel almost lucid and human--sings of better times to come. I expect this recovery to take a fairly short time (compared, say, to that hellish colon resection) and to have few side effects.
I'll let you know what else is happening as it happens.
Cheers,
Clem
The strangest thing happened in the night. I heard a strange squeaking sound, so I rolled over to see if it would go away. It got louder. As near as I can tell, the plate in my head is squeaking! It makes a tiny squeak sound when my heart beats. Pam put her ear on my skull and said she could hear it, too. Maybe it just needs a little WD-40 on it. Or it could be that the skull will grow back around the titanium mesh, and thus stop squeaking that way. It only happens in a few sleeping positions, so I guess it won't be a bother to me.
Aside from that, I'm on the "normal" recovery track. I hurt quite a bit when the drugs wear off, and I sleep quite a bit when the drugs kick in. The other times I feel almost lucid and human--sings of better times to come. I expect this recovery to take a fairly short time (compared, say, to that hellish colon resection) and to have few side effects.
I'll let you know what else is happening as it happens.
Cheers,
Clem
Saturday, September 5, 2009
Still in ICU
Clem didn't make it out of ICU today only because the Doctor will not be making rounds until 1 a.m. We decided that he would get more rest where he was and not to sweat it. Our experience being out in a standard room is that the staff is in every few hours waking you up and fusing over you. Not the case in ICU because there is no question about your condition since all your systems are being monitored by computer. It is quiet there and they keep the lights low which makes it easy to drift off to sleep aided by the pain medication. He is having a bit of pain but he did have a chunk cut out of his skull. I left him at 9:30 drifting off to sleep after fusing over his bed and rubbing baby powder on his back.
In The Chair
I had a visit with Clem at 10:00 a.m. He was sitting in a chair and had already taken a trip to get a ct scan of his head. His nausea seems in check and his pain is being held off with percocet. He was having trouble staying awake for our visit. He seems in good spirits but is ready to be out of the intensive care into a room where we can be together. He likes for me to watch him sleep.
I have slept on and off today just out of exhaustion. Right now I am in the cafeteria because it is quiet here. There are four televisions in the waiting room and the Tennessee football game is on. Visiting hours are at 4:00 so I am just hanging out until it is time. Alex and Stephanie came to visit earlier and brought me some fantastic chicken tortilla soup so I am all warm and satisified inside. I have a great book on tape but I have been nodding off everytime I crank it up. I think I will just walk around and gather up some hospital germs while waiting for visiting time. Clem and I have been texting back and forth and it makes me really miss him.
I have slept on and off today just out of exhaustion. Right now I am in the cafeteria because it is quiet here. There are four televisions in the waiting room and the Tennessee football game is on. Visiting hours are at 4:00 so I am just hanging out until it is time. Alex and Stephanie came to visit earlier and brought me some fantastic chicken tortilla soup so I am all warm and satisified inside. I have a great book on tape but I have been nodding off everytime I crank it up. I think I will just walk around and gather up some hospital germs while waiting for visiting time. Clem and I have been texting back and forth and it makes me really miss him.
No More Tumor
Sorry I haven't posted until now. The laptop was in the car last night and I had very sketchy service on my iphone. Clem went through the procedure without any complications and last night at 9pm he was alert and eating jello and ice cream. The plan is to heal for the next few weeks and then there will be some radiation on the site. There may also be more chemo based on the outcome of the biopsy.
If there are no complications such as bleeding or infection, Clem will go into a room today, stay for a day there and then home. I am already weary of this place. Erlanger is much, much bigger than Memorial and we have already spent most of the week working our way through its many mazes. Clem is on the fourth floor and I am on the first and there is something disconcerting about not being closer to him. There are also so many people here that you wonder if they could actually seek you out if you are needed.
We have a great Doctor who is also a great communicator which has filled us full of positive feelings about the procedure being a long term success. That really means alot when you have been through so much and are taken by surprise like we were. Clem is still wrapping his head around this new complication and still asks lots of questions about what this means. I am trying to keep him focused on the here and now and deal with tomorrow when it gets here. Sometimes that is a real challenge for both of us. In that vein our goal for today is getting into a room and getting out of the bed for the first walk without fainting or puking. If we get that over with today that will be enough.
Thank you for thinking of us.
Pam
If there are no complications such as bleeding or infection, Clem will go into a room today, stay for a day there and then home. I am already weary of this place. Erlanger is much, much bigger than Memorial and we have already spent most of the week working our way through its many mazes. Clem is on the fourth floor and I am on the first and there is something disconcerting about not being closer to him. There are also so many people here that you wonder if they could actually seek you out if you are needed.
We have a great Doctor who is also a great communicator which has filled us full of positive feelings about the procedure being a long term success. That really means alot when you have been through so much and are taken by surprise like we were. Clem is still wrapping his head around this new complication and still asks lots of questions about what this means. I am trying to keep him focused on the here and now and deal with tomorrow when it gets here. Sometimes that is a real challenge for both of us. In that vein our goal for today is getting into a room and getting out of the bed for the first walk without fainting or puking. If we get that over with today that will be enough.
Thank you for thinking of us.
Pam
Tuesday, September 1, 2009
BusyBusyBusy!
We went from being very boring for a couple of months, to being really busy and overwhelmed, all in the space of a couple of weeks. Here's the news:
This morning we went to visit the neurosurgeon. There's little "neural" for him to do here, but these are the guys who are good at going through people's skulls, so they're the ones you want to work there. He agrees that it shouldn't be too hard to take this little bump off. I was hoping for him to only have to deal with the outer layer of skull bone, but it doesn't seem to work that way. He'll have to remove a whole section of skull, maybe 2cm x 3cm in area. He called this surgery a craniotomy. For a brain surgeon, this is just the beginning of his usual routine, which is to work on the actual brain itself. In my case, it should be the end as well, as this kind of tumor almost always respects the dura (the brain's covering) and stays only in the skull bone.
In the morning (Wednesday morning) I'll head over to the hospital for pre-surgical stuff (blood test, etc.) Then on Friday morning I'll get up early, have an MRI done of the site, and get marked as to where they want to cut. The surgeon was just used to doing it this way, even though he can see the bump with his eyes. Much of the time his target is invisible underneat the skull, and they use a little wand to precisely locate the incision in 3-D space.
Friday afternoon at 12:30 is "tee-time". I can't imagine that the procedure will take very long. It won't seem long to me! He said I'll be under an general anesthetic, though for some brain surgery they do it with just a little local numbing. He will take out the little oval of bone, and then lay in a titanium mesh "plate" to protect the brain. I explained that I do a lot of work at height, caving, climbing, and such and inquired about the strength of the patch. There is an optional bit of stuff he can add that will make the patch even stronger. (Bondo brand body repair filler!) It's similar to dental cement. He said there's a slightly increased risk of infection with such an addition, and that with my lower-than-usual white blood cell count we might not want to take that extra risk. He's thinking about it now.
After one night, or perhaps two, in Erlanger's own special neural Intensive Care Unit I should be back in action and good to go.
This morning we went to visit the neurosurgeon. There's little "neural" for him to do here, but these are the guys who are good at going through people's skulls, so they're the ones you want to work there. He agrees that it shouldn't be too hard to take this little bump off. I was hoping for him to only have to deal with the outer layer of skull bone, but it doesn't seem to work that way. He'll have to remove a whole section of skull, maybe 2cm x 3cm in area. He called this surgery a craniotomy. For a brain surgeon, this is just the beginning of his usual routine, which is to work on the actual brain itself. In my case, it should be the end as well, as this kind of tumor almost always respects the dura (the brain's covering) and stays only in the skull bone.
In the morning (Wednesday morning) I'll head over to the hospital for pre-surgical stuff (blood test, etc.) Then on Friday morning I'll get up early, have an MRI done of the site, and get marked as to where they want to cut. The surgeon was just used to doing it this way, even though he can see the bump with his eyes. Much of the time his target is invisible underneat the skull, and they use a little wand to precisely locate the incision in 3-D space.
Friday afternoon at 12:30 is "tee-time". I can't imagine that the procedure will take very long. It won't seem long to me! He said I'll be under an general anesthetic, though for some brain surgery they do it with just a little local numbing. He will take out the little oval of bone, and then lay in a titanium mesh "plate" to protect the brain. I explained that I do a lot of work at height, caving, climbing, and such and inquired about the strength of the patch. There is an optional bit of stuff he can add that will make the patch even stronger. (Bondo brand body repair filler!) It's similar to dental cement. He said there's a slightly increased risk of infection with such an addition, and that with my lower-than-usual white blood cell count we might not want to take that extra risk. He's thinking about it now.
After one night, or perhaps two, in Erlanger's own special neural Intensive Care Unit I should be back in action and good to go.
My oncologist has me scheduled to begin chemo treatment again (hopefully just the last two doses that he "owes" me) in mid-September. We still don't know what else to expect. Among the options are these:
- change chemo blend and start a new regimen to target whatever caused this skull bump
- call this a "one-off" and just finish the last two doses of the old regimen
- take a dose or two of radiation to ensure that the brain bump is gone and doesn't come back
- or just skip the radiation because they were able to get all the stuff and a little margin around it and now there's nothing left to irradiate
And maybe more things to consider. I'm pretty eager to talk with the oncologist again and find out all these details.
That's about it, then. I don't expect to have any significant news from tomorrow's tests, but if I do you'll be the first to know. (Outside of my FaceBook friends.)
Cheers,
Clem
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