Thursday, April 27, 2006
No, I Haven't Been Drinking...
On Wednesday, I had a follow-up appointment with one of the nurse practitioners at the neurosurgical clinic. I was expecting some sort of thorough examination... maybe a blood draw, or a blood pressure cuff, even a temperature taken. Instead, all she needed to do was look at me.
Don't get me wrong, I didn't mind not being poked and prodded, I was just expecting a bit more. You know -- something to justify the drive. :-)
The long and short of it was that my incision looks great, that I continue to be ahead of "schedule" in my healing process, and that I can pass a field sobriety test. I guess I knew that she'd probably do those neurological ability tests again, but I've never been more nervous walking. Hear I am, stressing, thinking: "Heel to toe... heel to toe... heel to toe...". To say that I felt silly about that is an understatement. Especially after I passed with flying colors. She did feel the need to joke that she could tell that I hadn't downed a few on that afternoon. Ugh. :D
The best news from the meeting was that she would recommend that I start tapering down on my final medication after my next MRI (assuming things look good), and that she would recommend that I work as much as I'm comfortable... in other words, that the 4 hour per day cap isn't necessary in her mind. Cool. Now I just have to convince that neuro-oncologists of the same things, and I'll really be excited.
To summarize: I feel good, the doctors say that I look good, I can walk a straight line, and I may be fully back to work sooner than later. All of which is great. Oh, and I blogged two days in a row... Phew! How exhausting! :-)
'Til the next time the spirit moves me...
On Wednesday, I had a follow-up appointment with one of the nurse practitioners at the neurosurgical clinic. I was expecting some sort of thorough examination... maybe a blood draw, or a blood pressure cuff, even a temperature taken. Instead, all she needed to do was look at me.
Don't get me wrong, I didn't mind not being poked and prodded, I was just expecting a bit more. You know -- something to justify the drive. :-)
The long and short of it was that my incision looks great, that I continue to be ahead of "schedule" in my healing process, and that I can pass a field sobriety test. I guess I knew that she'd probably do those neurological ability tests again, but I've never been more nervous walking. Hear I am, stressing, thinking: "Heel to toe... heel to toe... heel to toe...". To say that I felt silly about that is an understatement. Especially after I passed with flying colors. She did feel the need to joke that she could tell that I hadn't downed a few on that afternoon. Ugh. :D
The best news from the meeting was that she would recommend that I start tapering down on my final medication after my next MRI (assuming things look good), and that she would recommend that I work as much as I'm comfortable... in other words, that the 4 hour per day cap isn't necessary in her mind. Cool. Now I just have to convince that neuro-oncologists of the same things, and I'll really be excited.
To summarize: I feel good, the doctors say that I look good, I can walk a straight line, and I may be fully back to work sooner than later. All of which is great. Oh, and I blogged two days in a row... Phew! How exhausting! :-)
'Til the next time the spirit moves me...
Wednesday, April 26, 2006
Where Was I? -- or -- No, I Didn't Fall Down a Well...
Yes, it has been some time since I've written an entry. No, I haven't had a strange mishap involving glue, apples, and colored string. I certainly haven't gotten a piece of canteloupe stuck in my throat.
And no, despite speculation to the contrary, I definitely have not given up on computers and decided to go into the exciting field of throat culture collecting. Honestly. The postcards to that effect can stop. Really.
:-)
In all seriousness, I've been holding off on posting simply because there hasn't been a whole lot to say. Every day is a little bit better than the last. My hair continues to grow (those hoping for the short cut to stay are simply going to have to be unhappy, I'm sorry to say), as does my energy level. My appetite has settled into a nice groove, and it doesn't involve double portions, or entire cakes.
Thankfully, I continue to have no neurological side effects from either Elvis, or the team of experts that ripped him from the couch and booted him out the door on my behalf.
Today, I have the opportunity to see one of the nurse practitioners with the neurosurgeon. Just a check-up, so far as I am aware. I'll let you all know what they have to say, tomorrow. Yes, I recognize that that would mean two blog entries in two days. Sometimes you just have to go crazy, you know?
- - -
One of the fun things I've had an opportunity to do in the last few days is be "Mr. Mom", otherwise known as "Mr. You've Been Feeling Really Good So the Wife and Firstborn Are Heading Out on an Expedition, So See You Around Dinner Time, Have Fun With the Twins". The former, I think, is a bit less of a mouthful.
It couldn't have gone more smoothly, honestly. I got a chance to fold laundry, run a few more loads, get the twins up, feed them, clean up after them, get them set up with some toys, clean up after them, change a flurry of dirty diapers, clean myself up after them, get them dressed to go outside, clean up after them, lay them down for naps, clean up after them, etc. (I admit, there may be one or two extra "clean up after them"s in there, but you get the idea).
There weren't any near phone-the-wife-in-a-panic experiences, nothing I couldn't handle. Which was a great feeling... getting through the day without finding something I couldn't handle. I even got two extremely peaceful naps out of the deal... after all, the twins are still napping for a good three hours at a stretch!
Things felt, in a word, normal. I'm feeling that more and more each day, and that's exciting.
Will I be playing company softball this summer? Umm, no. Will I be trying to beat my personal best in the mile any time soon? Not likely.
Will I have an opportunity to work on catching the ball with my eldest? You bet... we've already begun. Will I be able to chase my twins around the living room? Of course! And they might not be able to stay ahead of me for long!
Will I be able to live a relatively normal life? So far as I can tell, I already pretty much am. What's normal, anyhow? We all have stresses and strains, hardships and joys. Does what happened to me make me any less normal? Or my life any less normal? I don't think I can allow myself to think about it that way. My life might be different (no giggling from the gallery, I know I've always been a smidge _different_), but I can live it just the same.
Life tossed me a curveball, but I'm taking that as an opportunity to stretch a bloop single into a double. And, as my father can attest, the fact that I was even able to fight off a pitch and get the single is a minor miracle. I'm pretty sure that every one of you has helped give me the strength to do that... and I appreciate the boost. If there's one thing I've learned through all of this, as I've said before, it's humbling to know just how many people care. Thank you.
'Til the next time the spirit moves me...
(Now, if only my dad would have let me pitch that one summer. Sheesh! You should see some of the "arms" he put out on the mound...)
Saturday, April 15, 2006
Not Even The Quiet Days Are All That Quiet...
Ah... how relaxing. I'm sitting with a laptop in the front yard, enjoying the warm weather. There is a slight breeze, and I can watch the tree limbs shaking their buds at me. I'm wearing shorts, all of the scabs have fallen away from my incision line, I've ditched my hats... such comfort.
Oh, and I very nearly just got hit in the head by a frisbee, speeding down vertically towards my skull at what seemed to be the speed of sound. Good things my reflexes are pretty much what they used to be.
Life, indeed, is slowly returning to normal. Granted, I'm still not comfortable bending over too far, and I still can't lift much, but those sorts of things don't inhibit me too terribly. I can watch the kids all by myself for instance (thus the frisbee), and I've already folded about five loads of laundry. If only daytime TV were any better...
In the good news department, I was cleared by my neuro-oncologist to begin working again. I've got a cap of four hours per day, but it is very comforting to get back to doing one of those things that I do fairly well. One more thing that demonstrates a return to normalcy.
I'm so pleased to really feel my strength returning bit by bit each day. My body still tells me "Nap Time!" during the day, but it feels as if it is with less frequency and with short durations. Of course, my rest periods are often highlighted with such lovely delights as, "Daddy! I need you! It's an emergency!"... only to drag myself from the bed, stagger down the hall, and find out that someone would like me to know that he had found a train in a box that he forgot that he had. Ah, the wonders of parenthood.
In all honesty, though, I still can't complain. I continue to feel great, my stress levels are down, my spirits are high, and it appears to be spring in Minnesota.
Ooh! Can someone knock on wood? The last thing that I need is for spring to summer and autumn a miss and head straight to winter. Tomorrow. :-)
'Till the next time the spirit moves me...
Ah... how relaxing. I'm sitting with a laptop in the front yard, enjoying the warm weather. There is a slight breeze, and I can watch the tree limbs shaking their buds at me. I'm wearing shorts, all of the scabs have fallen away from my incision line, I've ditched my hats... such comfort.
Oh, and I very nearly just got hit in the head by a frisbee, speeding down vertically towards my skull at what seemed to be the speed of sound. Good things my reflexes are pretty much what they used to be.
Life, indeed, is slowly returning to normal. Granted, I'm still not comfortable bending over too far, and I still can't lift much, but those sorts of things don't inhibit me too terribly. I can watch the kids all by myself for instance (thus the frisbee), and I've already folded about five loads of laundry. If only daytime TV were any better...
In the good news department, I was cleared by my neuro-oncologist to begin working again. I've got a cap of four hours per day, but it is very comforting to get back to doing one of those things that I do fairly well. One more thing that demonstrates a return to normalcy.
I'm so pleased to really feel my strength returning bit by bit each day. My body still tells me "Nap Time!" during the day, but it feels as if it is with less frequency and with short durations. Of course, my rest periods are often highlighted with such lovely delights as, "Daddy! I need you! It's an emergency!"... only to drag myself from the bed, stagger down the hall, and find out that someone would like me to know that he had found a train in a box that he forgot that he had. Ah, the wonders of parenthood.
In all honesty, though, I still can't complain. I continue to feel great, my stress levels are down, my spirits are high, and it appears to be spring in Minnesota.
Ooh! Can someone knock on wood? The last thing that I need is for spring to summer and autumn a miss and head straight to winter. Tomorrow. :-)
'Till the next time the spirit moves me...
Thursday, April 13, 2006
Finally! The Rest of the Story From Last Week!
... and yes, I think that the exclamation points are deserved. Your mileage may vary. :-)
Before I jump in to more about the most recent word from the doctors (which some of you have already heard by now), I just want to reassure everyone that my recovery from the surgery continues to move along extremely well. I've been slowly transitioning back to work, in particular, which feels wonderfully good. Thankfully, my employer has been and continues to be extremely flexible... even with a four hour a day cap (doctor's orders), I can work many of those hours from home, I can spread the hours out through the day if I need to (to accommodate naps, doctor's visits, etc.), etc. It will be eleven years with this company as of June, and they have always taken care of me. I hope that they find me a loyal, capable employee in return (and I'm pretty sure that they do).
Now, back to the story.
When last we left the team of doctors collaborating about my care, we had good news on all fronts, even if the opinions on short term care fell in to two camps.
In this corner, we had the neurosurgeons, who (in my untrained opinion, at any rate) wanted to primarily allow my brain to recovery from the surgical procedure. They had, after all, cracked my skull and mucked about a bit. Very skillfully, though, we must add. A portion of the "heal and we'll see about further aftercare later" approach is absolutely tied to the excellence of the surgery (as I mentioned last blog).
And in this corner, we had the neuro-oncologists, who (with another untrained opinion) were now responsible for making sure that Elvis got what was coming to him. In this, they were very cautious... for them, it didn't pay to be too liberal with the old King. If he left any little bit behind, he could be ready for a comeback (Elvis II - The Awakening! Coming soon to a theater near you! We hope NOT!). Radiation is probably in my future, in other words, but it isn't nearly as scary a prospect to me as it once was.
That's where Friday morning comes in. I am so lucky that this community of professionals exists, and that I am tapped in to them. Every other week, they hold a tumor conference. Pretty early in the morning, as it turns out. I was lucky enough (a) to have the "on" week be the same week that my pathology report became available, and (b) to be on the slate of tumors for discussion. All camps jumped in to the ring along with their pals the pathologists and radiologists for a nice friendly scrum... and they came out (I was amazed!) with a consensus opinion regarding how to care for me in the short term.
1. We will not do radiation immediately. Let's let the brain (and body!) continue to heal and recharge. In my opinion, I think there are three components to this... (1) the more healing I have had, the more receptive my body and mind will be to another "irritating" procedure, (2) the "let's not do a procedure if we don't have evidence that it is necessary" camp, and (3) that given the success of the surgery, the likelihood that even very aggressively growing cells will grow beyond the ability to be handled by radiation is very, very small.
2. Instead of an MRI to establish a baseline at three months, we will do it at two. This pulls that next decision in a month. Just in case things do happen to begin growing, we give ourselves a better chance to detect them early.
3. We won't be guaranteed radiation after the two month MRI, either. Radiation may be in the cards, but the consensus for now is to take a wait and see approach. I may need radiation, but they want to do it only if, and then, when, necessary.
Believe me... that all sounded REALLY good! As I've always found with this medical team, their recommendations have made sense, have felt "right", and have been prudent. I continue to feel as if they know what they are doing. I can trust them. They certainly seem to have my best interests always in mind.
Wow. I'm a lucky man, and I know it.
So, the long and short of it is that I get to keep living, and living well. I know I will get the care I need, when I need it, and that's all I can ask for.
Speaking of which, I'm off to shower, then make some pancakes for the kids. :-)
'Till the next time the spirit moves me...
... and yes, I think that the exclamation points are deserved. Your mileage may vary. :-)
Before I jump in to more about the most recent word from the doctors (which some of you have already heard by now), I just want to reassure everyone that my recovery from the surgery continues to move along extremely well. I've been slowly transitioning back to work, in particular, which feels wonderfully good. Thankfully, my employer has been and continues to be extremely flexible... even with a four hour a day cap (doctor's orders), I can work many of those hours from home, I can spread the hours out through the day if I need to (to accommodate naps, doctor's visits, etc.), etc. It will be eleven years with this company as of June, and they have always taken care of me. I hope that they find me a loyal, capable employee in return (and I'm pretty sure that they do).
Now, back to the story.
When last we left the team of doctors collaborating about my care, we had good news on all fronts, even if the opinions on short term care fell in to two camps.
In this corner, we had the neurosurgeons, who (in my untrained opinion, at any rate) wanted to primarily allow my brain to recovery from the surgical procedure. They had, after all, cracked my skull and mucked about a bit. Very skillfully, though, we must add. A portion of the "heal and we'll see about further aftercare later" approach is absolutely tied to the excellence of the surgery (as I mentioned last blog).
And in this corner, we had the neuro-oncologists, who (with another untrained opinion) were now responsible for making sure that Elvis got what was coming to him. In this, they were very cautious... for them, it didn't pay to be too liberal with the old King. If he left any little bit behind, he could be ready for a comeback (Elvis II - The Awakening! Coming soon to a theater near you! We hope NOT!). Radiation is probably in my future, in other words, but it isn't nearly as scary a prospect to me as it once was.
That's where Friday morning comes in. I am so lucky that this community of professionals exists, and that I am tapped in to them. Every other week, they hold a tumor conference. Pretty early in the morning, as it turns out. I was lucky enough (a) to have the "on" week be the same week that my pathology report became available, and (b) to be on the slate of tumors for discussion. All camps jumped in to the ring along with their pals the pathologists and radiologists for a nice friendly scrum... and they came out (I was amazed!) with a consensus opinion regarding how to care for me in the short term.
1. We will not do radiation immediately. Let's let the brain (and body!) continue to heal and recharge. In my opinion, I think there are three components to this... (1) the more healing I have had, the more receptive my body and mind will be to another "irritating" procedure, (2) the "let's not do a procedure if we don't have evidence that it is necessary" camp, and (3) that given the success of the surgery, the likelihood that even very aggressively growing cells will grow beyond the ability to be handled by radiation is very, very small.
2. Instead of an MRI to establish a baseline at three months, we will do it at two. This pulls that next decision in a month. Just in case things do happen to begin growing, we give ourselves a better chance to detect them early.
3. We won't be guaranteed radiation after the two month MRI, either. Radiation may be in the cards, but the consensus for now is to take a wait and see approach. I may need radiation, but they want to do it only if, and then, when, necessary.
Believe me... that all sounded REALLY good! As I've always found with this medical team, their recommendations have made sense, have felt "right", and have been prudent. I continue to feel as if they know what they are doing. I can trust them. They certainly seem to have my best interests always in mind.
Wow. I'm a lucky man, and I know it.
So, the long and short of it is that I get to keep living, and living well. I know I will get the care I need, when I need it, and that's all I can ask for.
Speaking of which, I'm off to shower, then make some pancakes for the kids. :-)
'Till the next time the spirit moves me...
Monday, April 10, 2006
The Spirit Has (Finally) Moved Me...
Greetings, everyone!
I must admit to having felt a bit guilty not blogging over the last few days... particularly since I mentioned on Thursday that I'd finish letting everyone know about my health status on Friday, or Saturday. Oops!
In my defense, I've been feeling so good that I've been spending all of my time living, and not even thinking about the blog... except really late at night. You know how it is, you lay there thinking, "Boy, what a day. You know, I really ought to... [snore][snore]".
This afternoon, though, the twins are asleep, their big brother is playing outside, I've already gotten a bunch of things done today -- now is my chance to get a little computer therapy and type away for a few minutes.
So, to try and pick up where the story left off...
As of Thursday, we had visited both the neurosurgeon's office as well as the neuro-oncologists office, and we were very pleased with all of the news that they had to offer. The nutshell analysis is that the neurosurgeons were pretty close to saying that waiting and seeing was the best approach, and that I could expect to schedule an MRI three months after surgery to see if anything else needed to be done. The neuro-oncologists were nervous that the oddities in my tumor were enough to play things very safe, erring towards caution that just a few cells might remain after my most excellent surgery, and that the proper course of action would be one course of radiation fairly soon.
One course of radiation. Our fears that follow on care might be a scheduled regimen of chemo and radiation over some long period of time were really doused. They also were able to explain enough about the radiation procedure that I was very comfortable that it would be manageable if and when it became necessary.
As it turns out, there is more to the pathology story, but that is for yet another time... though I promise it will be sooner than four days this time!
The story I hadn't finished telling was on their evaluation of my health and general prognosis.
The executive summary from the nurse practitioner was this:
"If you play the lottery, you ought to be buying a ticket."
Wow! What a way to start a conversation! You can bet I was ready to just fly like a kite with that sort of opening!
Really, from the very first few minutes after surgery they were pretty confident that my neurological functions were pretty much entirely intact. Amazing. By the time that I was in the office on Thursday, they were nearly positive.
One of the methods that they use to "grade" patients with tumors is something called the "Karnofsky scale". It is a somewhat subjective measure, but it tries to take into account things like neurological health of the patient to get some indication of the quality of life... i.e. what level of impairment does this patient appear to have. Sometimes that is a predictor of long term prognosis... it certainly helps to indicate the level of support and care that a patient may need.
My nurse practitioner let me know that she would probably grade me out at 100. I've never been so glad to do well on a test. :-D
Then she went on to tell me about some studies that have been done, trying to understand what factors are good predictors for long term prognosis. Apparently, there are generally four factors that contribute quite a bit. They are:
Greetings, everyone!
I must admit to having felt a bit guilty not blogging over the last few days... particularly since I mentioned on Thursday that I'd finish letting everyone know about my health status on Friday, or Saturday. Oops!
In my defense, I've been feeling so good that I've been spending all of my time living, and not even thinking about the blog... except really late at night. You know how it is, you lay there thinking, "Boy, what a day. You know, I really ought to... [snore][snore]".
This afternoon, though, the twins are asleep, their big brother is playing outside, I've already gotten a bunch of things done today -- now is my chance to get a little computer therapy and type away for a few minutes.
So, to try and pick up where the story left off...
As of Thursday, we had visited both the neurosurgeon's office as well as the neuro-oncologists office, and we were very pleased with all of the news that they had to offer. The nutshell analysis is that the neurosurgeons were pretty close to saying that waiting and seeing was the best approach, and that I could expect to schedule an MRI three months after surgery to see if anything else needed to be done. The neuro-oncologists were nervous that the oddities in my tumor were enough to play things very safe, erring towards caution that just a few cells might remain after my most excellent surgery, and that the proper course of action would be one course of radiation fairly soon.
One course of radiation. Our fears that follow on care might be a scheduled regimen of chemo and radiation over some long period of time were really doused. They also were able to explain enough about the radiation procedure that I was very comfortable that it would be manageable if and when it became necessary.
As it turns out, there is more to the pathology story, but that is for yet another time... though I promise it will be sooner than four days this time!
The story I hadn't finished telling was on their evaluation of my health and general prognosis.
The executive summary from the nurse practitioner was this:
"If you play the lottery, you ought to be buying a ticket."
Wow! What a way to start a conversation! You can bet I was ready to just fly like a kite with that sort of opening!
Really, from the very first few minutes after surgery they were pretty confident that my neurological functions were pretty much entirely intact. Amazing. By the time that I was in the office on Thursday, they were nearly positive.
One of the methods that they use to "grade" patients with tumors is something called the "Karnofsky scale". It is a somewhat subjective measure, but it tries to take into account things like neurological health of the patient to get some indication of the quality of life... i.e. what level of impairment does this patient appear to have. Sometimes that is a predictor of long term prognosis... it certainly helps to indicate the level of support and care that a patient may need.
My nurse practitioner let me know that she would probably grade me out at 100. I've never been so glad to do well on a test. :-D
Then she went on to tell me about some studies that have been done, trying to understand what factors are good predictors for long term prognosis. Apparently, there are generally four factors that contribute quite a bit. They are:
- Neurological health -- i.e. "how am I doing". As I've already mentioned (and some of you have experienced firsthand), I feel better than I have in ages... certainly better than before surgery. And the doctors are agreeing on a clinical level. Awesome!!
- Surgical outcome -- i.e. "how much could they get". As I've already mentioned, Dr. Nagib went in with his skilled hands, and I came out a winner. Based on Dr. Nagib's analysis, and the information in the followup MRI, he either got ALL of it, or all that was humanly possible. My understanding is that there was a statement in the MRI report the day after surgery stating that there was no credible evidence of any remaining tumor cells. Could there be one or two or a few? Certainly... but that's why we've got the neuro-oncologists and radiologists on our side, ready to knock out anything left if it rears its ugly head.
All in all, surgical outcome: about as good as can be had. - Attitude -- this is one of those things that's hard for me to gauge fully. But I know that I went in to this feel happy, strong, and confident, and, if anything, I've come out of surgery even more happy, strong, and confident than before. Certainly others have told me that they can't believe my attitude through this process. The nurse practitioner agreed... which leads me to believe that I don't need to worry about attitude! :-)
- Support Network -- I was really pleased to hear that this was part of it, as I've been able to feel how true it must be. It's not just my wife, who has been phenomenal... or my family, both immediate and extended... or my local friends... or my church congregation... or my coworkers... it has been a countless multitude... all pulling for me, all sharing their thoughts and well wishes and prayers... and I can't thank you all enough. Each and every one of the people following along on this blog I am sure contributes in some way to this continuing positive result.
It doesn't necessarily take gifts, or cards, or meals to be supportive... though they certainly have been appreciated when they've come. I certainly believe that health and healing is a lot more than kind words or a belly full of hotdish. Just knowing that you are all out there, and all care about what happens to me... it's humbling, and I truly thank you.
So, the long and short of it is that I am a great many reasons to feel positive about my outcome. I may be tired sometimes (though a bit less each day), but I can feel that things continue to improve.
The stitches are out. The incision line looks great. It will almost entirely be hidden by my hair as it grows out. I feel fabulous. I was given the clearance to drive again, and have made two short trips (ah, to be mobile!). I can play with the kids, I can read, I can type, I can shop, I can..., I can..., in short, I can live.
Which brings me full circle, today. I once again apologize for leaving everyone hanging, though I think you can all appreciate that it's been a bit more attractive to me to get back to living. Rest assured, though, that you will continue to hear from me.
After all -- if you know me at all, you know I can't quite stop talking. :-)
'Till the next time the spirit moves me...
Thursday, April 06, 2006
Anaplastic Pleomorphic Xanthoastrocytoma
Say that five times fast! Quite the mouthful, isn't it?
That scientific name is the tumor classification for dearly departed Elvis. Notice that I didn't say "beloved", or "sorely missed"... we all know that would be a flat LIE...
The fact that we now have a name to the "face", of course, means that the pathology report was, in fact, in my file when my wife and I went to visit the neurosurgeon's office today. I'll return to that in a second (I hope you can all handle the suspense).
My sutures are out. My spirits are high. My neurological function continues to be excellent. Physically, I'm doing very well. But I'm sure that you all would prefer I get to the meat of the issue, so I'll blog more about how I'm doing and why that in and of itself is also a positive sign tomorrow maybe. Or Saturday.
... because right now, I am content to be pleased with my pathology report.
The news is good. We are pleased. We can see the path we need to traverse, and it is absolutely a manageable one.
The tumor was a tough nut to crack... extremely rare, as it turns out. The classification isn't in and of itself particularly rare... they are generally, relatively benign tumors, most often seen in children. When the tumors are graded at a one or a two (this class of tumor is graded from one to three), in children, they generally have surgery and then are simply monitored via MRI periodically to make sure that it stays gone.
My version of the tumor is graded at a three... and our understanding is that is because this generally benign tumor had some cells (I don't know the percentage) that seemed to be transitioning to malignancy, and were starting to grow (again?). This unexpected combination is what gave everyone in the pathology team pause, and why so many groups ended up being involved.
Ultimately, though, their finding is that the prognosis is very good. My most excellent surgeon got what seems like all that is humanly possibly OUT, and that greatly increases the chances that there wouldn't be new growth (given the cells are missing). That's where the neuro-oncologist comes in... they indicate (in a very comforting, very proactive way) that they get a bit uncomfortable just "letting things be" whenever there are malignant cells involved, so I may be scheduled for a course of radiation.
At first, I thought that that was something to fear. Apparently, the techniques are so good, and my tumor location so favorable, that they would anticipate that the worst side effect would likely be fatigue.
I think I can handle fatigue for six weeks if they are able to "cleanse" the tissue that used to surround the tumor of any renegade cells that surgery missed.
All in all: I am feeling great. I am neurologically intact. The tumor itself is so very nearly gone, if not all gone. I am linked to a neuro-oncologist who may recommend that we be proactive and try to make sure that, if anything is left, we take care of that, too.
In other words: a plan. A manageable plan. A reasonable time frame.
News fit for a king. A dearly departed king, that is. And by dearly, I mean "I am dearly glad that that fat bum has left the building."
Good night all, I intend to sleep well. :-)
Say that five times fast! Quite the mouthful, isn't it?
That scientific name is the tumor classification for dearly departed Elvis. Notice that I didn't say "beloved", or "sorely missed"... we all know that would be a flat LIE...
The fact that we now have a name to the "face", of course, means that the pathology report was, in fact, in my file when my wife and I went to visit the neurosurgeon's office today. I'll return to that in a second (I hope you can all handle the suspense).
My sutures are out. My spirits are high. My neurological function continues to be excellent. Physically, I'm doing very well. But I'm sure that you all would prefer I get to the meat of the issue, so I'll blog more about how I'm doing and why that in and of itself is also a positive sign tomorrow maybe. Or Saturday.
... because right now, I am content to be pleased with my pathology report.
The news is good. We are pleased. We can see the path we need to traverse, and it is absolutely a manageable one.
The tumor was a tough nut to crack... extremely rare, as it turns out. The classification isn't in and of itself particularly rare... they are generally, relatively benign tumors, most often seen in children. When the tumors are graded at a one or a two (this class of tumor is graded from one to three), in children, they generally have surgery and then are simply monitored via MRI periodically to make sure that it stays gone.
My version of the tumor is graded at a three... and our understanding is that is because this generally benign tumor had some cells (I don't know the percentage) that seemed to be transitioning to malignancy, and were starting to grow (again?). This unexpected combination is what gave everyone in the pathology team pause, and why so many groups ended up being involved.
Ultimately, though, their finding is that the prognosis is very good. My most excellent surgeon got what seems like all that is humanly possibly OUT, and that greatly increases the chances that there wouldn't be new growth (given the cells are missing). That's where the neuro-oncologist comes in... they indicate (in a very comforting, very proactive way) that they get a bit uncomfortable just "letting things be" whenever there are malignant cells involved, so I may be scheduled for a course of radiation.
At first, I thought that that was something to fear. Apparently, the techniques are so good, and my tumor location so favorable, that they would anticipate that the worst side effect would likely be fatigue.
I think I can handle fatigue for six weeks if they are able to "cleanse" the tissue that used to surround the tumor of any renegade cells that surgery missed.
All in all: I am feeling great. I am neurologically intact. The tumor itself is so very nearly gone, if not all gone. I am linked to a neuro-oncologist who may recommend that we be proactive and try to make sure that, if anything is left, we take care of that, too.
In other words: a plan. A manageable plan. A reasonable time frame.
News fit for a king. A dearly departed king, that is. And by dearly, I mean "I am dearly glad that that fat bum has left the building."
Good night all, I intend to sleep well. :-)
Wednesday, April 05, 2006
I'm Still Doing Just Fine!
I realized this afternoon, as another fairly lazy day was passing me by, that I hadn't blogged on Tuesday. Hopefully no one read anything negative into my silence. If anything, it can be considered a very positive sign. I'm feeling so good, thus far, that I really haven't had much to say in the last (for the most part) two days. Life just is continuing to roll on, and I've been slotting back in to the swing of things more and more each day. I even visited my office on Tuesday (almost entirely to say to all of my very supportive coworkers) and conferenced in from home on a very low key staff meeting on Wednesday morning.
I'm starting to pick up where I left off -- or, at least, I'm preparing to grab those reins whenever I'm given clearance to do so. I still seem to have little to no complications from the surgery, which is an absolute blessing.
Thursday will be a tougher day simply because it is the next set of visits with my medical team. I go in for some lab work (checking levels of certain chemicals in my blood). Next, I have a scheduled meeting with a nurse practitioner in the neurosurgeon's office -- assuming all goes well, I will leave that meeting without my stitches! Shampoo and water are on the horizon for my entire head! Huzzah!
She will evaluate my progress as far as surgery recovery is concerned, and I have no reason to be worried that that will be an issue. She also hopes to discuss the pathology report with us.
Unfortunately, as of Tuesday, there still was no pathology report to speak of. Believe me, I would like to know that that report will be available and that we will be able to start planning whatever the next steps will bring. I'm also very willing to allow the pathologists to do as thorough a job as is necessary, with whatever resources they feel are necessary. As much as I we all want to know, I would much rather have them get it right. The last thing I need at this point is a false positive or a false negative.
After that, I've got a meeting with a neuro-oncologist scheduled. As it has been explained to me, this is the group that would generally follow my progress past the surgical step regardless of the pathology results. We are certainly hopeful that that meeting proves to be a positive one.
All in all, I'm sure that tomorrow morning will be fairly stressful as that last bit of waiting always seems to be the hardest.
For those so inclined, please keep us in your prayers tomorrow, especially praying with us that the pathology reports are available, are complete, are accurate, and of course have positive news. For as much as my health, faith, support, and attitude all lead me to feel strongly that they will tell me something that will relieve our deepest fears, it isn't hard to at least be anxious.
For everyone following along, I can't ever tell you how much your thoughts and well wishes have sustained and inspired me. I truly appreciate what the community around me has done to bolster my already soaring confidence.
Thanks to all... and here is hoping for a positive report for the blog tomorrow night...
I realized this afternoon, as another fairly lazy day was passing me by, that I hadn't blogged on Tuesday. Hopefully no one read anything negative into my silence. If anything, it can be considered a very positive sign. I'm feeling so good, thus far, that I really haven't had much to say in the last (for the most part) two days. Life just is continuing to roll on, and I've been slotting back in to the swing of things more and more each day. I even visited my office on Tuesday (almost entirely to say to all of my very supportive coworkers) and conferenced in from home on a very low key staff meeting on Wednesday morning.
I'm starting to pick up where I left off -- or, at least, I'm preparing to grab those reins whenever I'm given clearance to do so. I still seem to have little to no complications from the surgery, which is an absolute blessing.
Thursday will be a tougher day simply because it is the next set of visits with my medical team. I go in for some lab work (checking levels of certain chemicals in my blood). Next, I have a scheduled meeting with a nurse practitioner in the neurosurgeon's office -- assuming all goes well, I will leave that meeting without my stitches! Shampoo and water are on the horizon for my entire head! Huzzah!
She will evaluate my progress as far as surgery recovery is concerned, and I have no reason to be worried that that will be an issue. She also hopes to discuss the pathology report with us.
Unfortunately, as of Tuesday, there still was no pathology report to speak of. Believe me, I would like to know that that report will be available and that we will be able to start planning whatever the next steps will bring. I'm also very willing to allow the pathologists to do as thorough a job as is necessary, with whatever resources they feel are necessary. As much as I we all want to know, I would much rather have them get it right. The last thing I need at this point is a false positive or a false negative.
After that, I've got a meeting with a neuro-oncologist scheduled. As it has been explained to me, this is the group that would generally follow my progress past the surgical step regardless of the pathology results. We are certainly hopeful that that meeting proves to be a positive one.
All in all, I'm sure that tomorrow morning will be fairly stressful as that last bit of waiting always seems to be the hardest.
For those so inclined, please keep us in your prayers tomorrow, especially praying with us that the pathology reports are available, are complete, are accurate, and of course have positive news. For as much as my health, faith, support, and attitude all lead me to feel strongly that they will tell me something that will relieve our deepest fears, it isn't hard to at least be anxious.
For everyone following along, I can't ever tell you how much your thoughts and well wishes have sustained and inspired me. I truly appreciate what the community around me has done to bolster my already soaring confidence.
Thanks to all... and here is hoping for a positive report for the blog tomorrow night...
Monday, April 03, 2006
Too Quiet a Day For a Creative Title...
This will be a short one... to match my relatively quiet day.
The previous night was, how shall I say, hectic, what with multiple children feeling sick (one of them with a colorful flair), and thus really two different periods of really good sleep with some consoling of children (my wife and mother were thankfully both available to do the brunt of the work... I felt like I was mostly moral support) and a good nap in the middle.
Amazingly, however, everything was pretty mellow today. The ones that were ill took things quite easy, including multiple napping periods, and a light breakfast and lunch. We got started on the day early, but it meant the day didn't feel as compressed as it sometimes does. Combined with a lack of activities on the schedule, it was pretty relaxing. Even our eldest was really well behaved most of the day, speaking politely, keeping quiet... if we weren't worried about a repeat of the evening performance, it would have gone down as a really restful day.
I even got to take another brief outing this evening with my wife, which really is refreshing, followed by a quiet dinner (on paper plates no less! Easy cleanup!), a little more resting, helping send the kids to bed (which they actually pretty much accepted!), a bit more resting... can you tell that today had a bit of a theme?
Bring on tomorrow, I say... after some more good rest, of course. :-)
This will be a short one... to match my relatively quiet day.
The previous night was, how shall I say, hectic, what with multiple children feeling sick (one of them with a colorful flair), and thus really two different periods of really good sleep with some consoling of children (my wife and mother were thankfully both available to do the brunt of the work... I felt like I was mostly moral support) and a good nap in the middle.
Amazingly, however, everything was pretty mellow today. The ones that were ill took things quite easy, including multiple napping periods, and a light breakfast and lunch. We got started on the day early, but it meant the day didn't feel as compressed as it sometimes does. Combined with a lack of activities on the schedule, it was pretty relaxing. Even our eldest was really well behaved most of the day, speaking politely, keeping quiet... if we weren't worried about a repeat of the evening performance, it would have gone down as a really restful day.
I even got to take another brief outing this evening with my wife, which really is refreshing, followed by a quiet dinner (on paper plates no less! Easy cleanup!), a little more resting, helping send the kids to bed (which they actually pretty much accepted!), a bit more resting... can you tell that today had a bit of a theme?
Bring on tomorrow, I say... after some more good rest, of course. :-)
Sunday, April 02, 2006
Random Thoughts...
It was a relatively quiet day, which was AOK by me. I did get out and about a bit this morning, which was fun. We piled the menagerie into the van and headed to church. It was nice to see all the familiar faces, and it was good to be seen. Everyone is so supportive of our family, and it was uplifting to be able to thank folks for their thoughts and prayers, and let them know that I'm doing well so far.
I also happened to have a wonderful visit from a man for whom I once drove through the night so as not to let him down, arriving in the nick of time to sing on Easter Sunday... he provided me the confidence to sing (and sing loudly) for a number of years in our church (and then, later, in a local professional group for a few years), and I am ever grateful. I hadn't seen him in a while, and it was great fun to catch up with him.
One of the things that has been extremely helpful to me personally and to my family as a whole has been the incredible generosity that people have shown in bringing meals to the house. With as hectic as these last few weeks have been, it's been nice to not have to worry about a hot meal at dinner. Believe me, I hope to get back to standing at the stove making dinner as soon as I can, but I'm more than willing to eat what I find in our refrigerator and freezers.
To all that have prepared meals for us (and I know that many of you have been following along in my blog), please accept my heartfelt thanks. They have been deeply appreciated.
Speaking of meals... I neglected to mention the name of the Chinese restaurant that I found so fascinating on Friday, and was called on it. For those in the area that are interested, I snuck a comment of my own onto that food-centric post. If you happen to try it, I hope you enjoy it.
Until the next time the spirit moves me...
It was a relatively quiet day, which was AOK by me. I did get out and about a bit this morning, which was fun. We piled the menagerie into the van and headed to church. It was nice to see all the familiar faces, and it was good to be seen. Everyone is so supportive of our family, and it was uplifting to be able to thank folks for their thoughts and prayers, and let them know that I'm doing well so far.
I also happened to have a wonderful visit from a man for whom I once drove through the night so as not to let him down, arriving in the nick of time to sing on Easter Sunday... he provided me the confidence to sing (and sing loudly) for a number of years in our church (and then, later, in a local professional group for a few years), and I am ever grateful. I hadn't seen him in a while, and it was great fun to catch up with him.
One of the things that has been extremely helpful to me personally and to my family as a whole has been the incredible generosity that people have shown in bringing meals to the house. With as hectic as these last few weeks have been, it's been nice to not have to worry about a hot meal at dinner. Believe me, I hope to get back to standing at the stove making dinner as soon as I can, but I'm more than willing to eat what I find in our refrigerator and freezers.
To all that have prepared meals for us (and I know that many of you have been following along in my blog), please accept my heartfelt thanks. They have been deeply appreciated.
Speaking of meals... I neglected to mention the name of the Chinese restaurant that I found so fascinating on Friday, and was called on it. For those in the area that are interested, I snuck a comment of my own onto that food-centric post. If you happen to try it, I hope you enjoy it.
Until the next time the spirit moves me...
Saturday, April 01, 2006
Food is My Fuel... And I Like Food
Yesterday ended up being a fun day for me. It started as an extraordinarily hectic day, with all sorts of things going on... and all of it reinforced, for me, that I'm not quite ready to do too much multi-tasking yet. It's tiring, and I was getting frazzled.
Then I got an opportunity for some rest, and it was wonderful. Spent some time hanging with my brother, watched a bit of a movie, relaxed. Recharged.
Then the excitement began. :-)
At my office, there are number of people that enjoy food and (almost as importantly) the dining experience. One in particular took it upon himself to encourage folks to try some of the really good restaurants in the Twin Cities and so has been organizing Friday afternoon lunch outings... I've had the opportunity to join them on a number of occasions, and I've not been disappointed.
This week, another of my coworkers thought it might be fun to bring the dining adventure to me. The spot they chose was a restaurant I had only really heard about in passing... but is apparently very well regarded as having very tasty, very authentic Mandarin Chinese dishes. It's the first I had heard of a restaurant with two menus... an "americanized" one and a more "authentic" one, catering to its Chinese patrons.
Wow! What a great choice... I had mentioned in passing (because they asked) that I was kind of in a mood for Chinese... and sort of expected the same old, same old. But the guys who went out and swung by the house were just the right sort of adventurous for me!! It was good to try some flavors and textures I hadn't... some of it must have been off of the "authentic" menu... but even if it wasn't, it was great. For the first time, I tried some fish in the context of oriental food... (I'm not much of a fish eater) and was just amazed at the flavor and textures of the fish and broccoli dish they brought. A few spicy dishes were there to savor, and then a hot little number that (according to online reviews I've since seen) is almost definitely straight off of the Mandarin authentic menu... cold bamboo tips marinated in chili oil (I'm 99% sure that's what it was... even if it wasn't, it was close to that)... I don't mind bamboo shoots in my oriental food, but I've never eaten little delicate strips that were recognizably bamboo... spicy and delicious.
I got my brother to at least taste the bamboo... but he was a bit turned off by the fact that these little segmented numbers looked a bit like tentacles to him.
:-D
Visiting with the guys for a bit was great too... I love to talk, and it's invigorating to do so.
'Course, I got a very nice rest after we ate. A very nice rest.
If that wasn't enough, the family had arranged things so that my wife and I could take my brother and mother to dinner without the kids, as it was my brother's last evening here. I had a hankering for fajitas... and wouldn't you know it, the place we decided on (and I promise I didn't know about it ahead of time) was running an all you can eat fajita special. Go figure. :-)
It was just one of those days, some downs, some ups, but the bits that were up were pretty high up. I got to see some of my friends. I got to eat two really satisfying meals. I got to spend some quiet time with my brother before he heads home. I was actually out and about again, for a little while, and it wasn't overwhelming.
It was just living, and that was nice.
Till the next time the spirit moves me...
Yesterday ended up being a fun day for me. It started as an extraordinarily hectic day, with all sorts of things going on... and all of it reinforced, for me, that I'm not quite ready to do too much multi-tasking yet. It's tiring, and I was getting frazzled.
Then I got an opportunity for some rest, and it was wonderful. Spent some time hanging with my brother, watched a bit of a movie, relaxed. Recharged.
Then the excitement began. :-)
At my office, there are number of people that enjoy food and (almost as importantly) the dining experience. One in particular took it upon himself to encourage folks to try some of the really good restaurants in the Twin Cities and so has been organizing Friday afternoon lunch outings... I've had the opportunity to join them on a number of occasions, and I've not been disappointed.
This week, another of my coworkers thought it might be fun to bring the dining adventure to me. The spot they chose was a restaurant I had only really heard about in passing... but is apparently very well regarded as having very tasty, very authentic Mandarin Chinese dishes. It's the first I had heard of a restaurant with two menus... an "americanized" one and a more "authentic" one, catering to its Chinese patrons.
Wow! What a great choice... I had mentioned in passing (because they asked) that I was kind of in a mood for Chinese... and sort of expected the same old, same old. But the guys who went out and swung by the house were just the right sort of adventurous for me!! It was good to try some flavors and textures I hadn't... some of it must have been off of the "authentic" menu... but even if it wasn't, it was great. For the first time, I tried some fish in the context of oriental food... (I'm not much of a fish eater) and was just amazed at the flavor and textures of the fish and broccoli dish they brought. A few spicy dishes were there to savor, and then a hot little number that (according to online reviews I've since seen) is almost definitely straight off of the Mandarin authentic menu... cold bamboo tips marinated in chili oil (I'm 99% sure that's what it was... even if it wasn't, it was close to that)... I don't mind bamboo shoots in my oriental food, but I've never eaten little delicate strips that were recognizably bamboo... spicy and delicious.
I got my brother to at least taste the bamboo... but he was a bit turned off by the fact that these little segmented numbers looked a bit like tentacles to him.
:-D
Visiting with the guys for a bit was great too... I love to talk, and it's invigorating to do so.
'Course, I got a very nice rest after we ate. A very nice rest.
If that wasn't enough, the family had arranged things so that my wife and I could take my brother and mother to dinner without the kids, as it was my brother's last evening here. I had a hankering for fajitas... and wouldn't you know it, the place we decided on (and I promise I didn't know about it ahead of time) was running an all you can eat fajita special. Go figure. :-)
It was just one of those days, some downs, some ups, but the bits that were up were pretty high up. I got to see some of my friends. I got to eat two really satisfying meals. I got to spend some quiet time with my brother before he heads home. I was actually out and about again, for a little while, and it wasn't overwhelming.
It was just living, and that was nice.
Till the next time the spirit moves me...
