Charles has been back at work for almost a month now, and he's doing great! :) I had been very worried that going back to work would be too much for him, but he has surprised me with how well he's been holding up. Yes, he does tire more quickly than he did a few years ago, but overall he is doing better than I could have imagined! He's been working part time so far and will hopefully be picking up another shift soon. In addition, everyone at Romaine's has been wonderful! I'm so happy that they've treated him so well throughout everything. It makes life so much easier knowing that they care about him and they're looking out for him, he could very easily have gotten a job at a place where the people wouldn't have been so nice! I bet all the trouble he had with jobs after moving to Mass happened for this very reason... so that he could be at a great restaurant with wonderful people! :) Having to follow up recovery with a new job search, or going back to a miserable place would NOT have been good!
Other than work, life has been pretty good for us. I know that I am thankful everyday that Charlie is doing so well! He constantly amazes me with his optimism and passion for life. He's truly a wonderful person.
We've been back to Albany twice in the past couple weeks and he got to see some of his family. He had really been missing his nephew a LOT so it was really nice to be able to spend a little time with him. Time has really flown! We had a lovely Thanksgiving with his family in NY and we're looking forward to seeing them again for Christmas. And we got to have our Third Thanksgiving with my family too! Yay food! Hah.
Since the surgery, Charles has come to notice some effects that Kirby had on him that he hadn't even realized. First is his energy level. He still tires easily but in the year or two before his surgery, Charles had found himself napping a lot, which he hadn't done before. These days he's making sure to get enough rest, but has found that he doesn't need to nap as much as he did before. I had read some things online about meningiomas having this sort of affect on people. It definitely is something that could happen in a way where you wouldn't even notice it.
In addition, a couple weeks ago Charles came home from work and said that he missed Kirby... quite the statement! He said that he missed him because he had previously been able to chop red onions without any tears... and now he can barely stand to do it! It seems that the tumor had actually had some effect on Charlie's sense of smell without him realizing it! I think he should be thankful anytime an onion makes his eyes water... even if it does make his job a little more difficult. :)
Unsurprisingly, Dr. Blacks's office never scheduled the appointment with Radiology like we requested (but we expected as much and never followed up, I'm not blaming them, it's not a huge deal). I think the plan is to just enjoy the time we have now and not worry about it so much (I'm surprised I haven't gotten any gray hairs with all the worrying I've done! Hah. Charles has enough for the both of us...). He has another MRI in January and we can go from there based on the results. Hopefully, there will be nothing to be found :) Until then, we're not worried about it and we're enjoying the time we have and his good health!
There is a lot to be thankful for this Holiday Season! :)
~Sue W.
Tuesday, December 1, 2009
Tuesday, November 3, 2009
Back To Work
Today is Charles' first day back at work. Send him some happy thoughts that it goes well! :)
Wednesday, October 21, 2009
1 Month Post-Op
I can't believe it's actually been 2 weeks since I last updated! Time has flown by! 1 month ago right now they were just finishing up Charlie's surgery! Thankfully I haven't needed to update because nothing too exciting has been going on. He's been doing really really well! We've been going out a lot on weekends and evenings, he's been able to spend time with friends. Last weekend we went to Attleboro twice to hang out with a large group of our friends. Charles even played indoor mini golf, which was a good amount of moving around and standing up for a while! It tired him out some, but you wouldn't even be able to tell he just had brain surgery! He's pretty much living like he was before, not really a whole lot being different because of the surgery, he's just a bit more tired and I won't let him lift heavy things and he still can't drive.
We've also been out shopping a bunch looking for halloween costumes! My former roommate Laura is having a costume party on Halloween night as her and her fiance Pj's Jack & Jill. Charles has decided to be Dumbledore and I got a cute witch costume. We're making the Dumbledore costume from pieces... he got a large black robe (though he wanted purple we couldn't find one that fit), we ordered a long white beard and wig, and a WB Licensed Dumbledore hat. He got a big ring and a necklace and I ordered him a cheap wand which looked WAY better in the picture online.. I'm sad about that... We just need to get him some cheap glasses and see about a few more details and we should be good to go! :)
Yesterday Charles said to me that his vision in his right eye was just about perfect! The best it's been in a while. He said he'd never have known there was anything wrong with it. He just needs a new Rx for his contacts and he thinks he'd be seeing perfectly. AWESOME!!!! :)
He's left a couple messages with work about being scheduled for the beginning of next month. He just called again this morning, so he hasn't heard anything back yet. I believe he told them he could work every other day for the first 2 weeks. I'm still really worried about it draining his energy a lot, I'll worry about his safety and well-being. But... he's still got another 2 weeks until then and hopefully by then I won't be as worried!
Charles is still planning on sending out Thank You cards to everyone who has sent him a Get Well card :) They're all over our livingroom!! It was lovely to receive them all.
Let me know if there's anything else you want updates on, I can't think of anything at the moment. So I'll leave you with some photos of Charles and Emily that I took not long after we got him home from the hospital. He couldn't bend down to pet her so I put her on his lap and she happily stayed to be petted. They're both adorable :)
<3 Sue W.
We've also been out shopping a bunch looking for halloween costumes! My former roommate Laura is having a costume party on Halloween night as her and her fiance Pj's Jack & Jill. Charles has decided to be Dumbledore and I got a cute witch costume. We're making the Dumbledore costume from pieces... he got a large black robe (though he wanted purple we couldn't find one that fit), we ordered a long white beard and wig, and a WB Licensed Dumbledore hat. He got a big ring and a necklace and I ordered him a cheap wand which looked WAY better in the picture online.. I'm sad about that... We just need to get him some cheap glasses and see about a few more details and we should be good to go! :)
Yesterday Charles said to me that his vision in his right eye was just about perfect! The best it's been in a while. He said he'd never have known there was anything wrong with it. He just needs a new Rx for his contacts and he thinks he'd be seeing perfectly. AWESOME!!!! :)
He's left a couple messages with work about being scheduled for the beginning of next month. He just called again this morning, so he hasn't heard anything back yet. I believe he told them he could work every other day for the first 2 weeks. I'm still really worried about it draining his energy a lot, I'll worry about his safety and well-being. But... he's still got another 2 weeks until then and hopefully by then I won't be as worried!
Charles is still planning on sending out Thank You cards to everyone who has sent him a Get Well card :) They're all over our livingroom!! It was lovely to receive them all.
Let me know if there's anything else you want updates on, I can't think of anything at the moment. So I'll leave you with some photos of Charles and Emily that I took not long after we got him home from the hospital. He couldn't bend down to pet her so I put her on his lap and she happily stayed to be petted. They're both adorable :)
<3 Sue W.
Wednesday, October 7, 2009
Follow-up Appointment
Charlie's follow up appointment to get his stitches out was yesterday. I made sure to get a quasi-decent photo of his stitches in the waiting room (with my phone) before he got them out.
The woman that took the stitches out was quite strange. The whole appointment was kind of weird, everyone was very rushed! The woman came in and acted like we'd met before, which we hadn't, we have no idea who she was...
Getting the stitches out was apparently decently painful. They had been in a little longer than usual because of when they had openings for appointments, and his head is healing pretty well so basically to get the stitches out she had to tear up lots of scabs and disrupt his healing. And of course to start with he had a pretty bad headache and hadn't slept well the night before so getting the stitches out made it even worse. But he's a trooper. From what he said I imagine I'd have cried or made them numb it or something! Hah. I'm a wimp though :) He said he just wanted it over with, and really it only took her a minute to get them all out. It bled in several spots where there had been scabs. And poor Charles has wanted to itch his head SO BADLY!! I told him once in his life he's NOT allowed to pick at his scabs! Haha. I told him he could pick at other scabs all he wants but NOT these ones!!! :) I understand it's hard, but he's doing a good job :)
I brought a list of questions with me and the woman that took his stitches out took them from me and started answering them without us really asking and elaborating what my notes (for myself to ask) had meant. She then took my list of questions and brought them to Dr. Black. The whole thing was kind of strange, I think more so because she was like a crazy whirlwind and never really explained what she was doing. I don't know.
When Dr. Black came in, the first thing he did was confuse me!!! He said Charles was doing really well he looked good, he was pleased how well he was healing and that the MRI after the surgery looked great, there was no tumor remaining. So I was like "whaaaaaaaaa?" Eventually when he was done talking I went back to the issue and said I wanted to clarify, that we had been told that not all of the tumor was removed because some of it was wrapped around the optic nerve. And then Dr. Black was kind of like, 'oh yeah..' I don't remember what he said exactly but we were both thinking he'd forgotten/didn't realize it was Charles, I don't know.. I mean I understand if he doesn't remember everything about Charles's surgery off the top of my head but there's a big difference between there's still tumor and it's all gone! But thankfully he clarified that there IS still tumor, he said a few millimeters in size, and that it DOES NOT show up on the MRI. So that will be really important to know in the future if A) they say the MRI is clean we know there are still tumor cells there and B) if they see tumor cells on the MRI that would mean that they have multiplied since the last MRI.
In addition, he said that the pathology came back that it was benign, but that the rate in which the cells multiplied was 11%, and he said normally it's 6-7%, and then he said "but we don't really know what that means". YAY for underfunded Meningioma research!! /sarcasm. I would assume that it would mean that his tumor is more likely to grow back, or grow back more quickly. But I take it that they don't have any proof of that. That's just my assumption because that would seem to make sense.
On the topic of radiosurgery, Dr. Black explained that there are 2 schools of thought:
1) The tumor is right now the smallest it would ever be so to get in there now and kill the remaining tumor cells would be easier because there are few of them and then maybe we'd be done with it.
2) That right now the tumor is so small it's not going to cause him any problems and it could be fine long term, so if there's no problems why go through a procedure that is harmful to your body and has it's own set of side-effects.
Dr. Black said that he is of the 2nd philosophy, and that doing the radiosurgery wasn't an immediate concern of his. Because I was really interested in knowing if it should be done or not and when he said we could get an appointment with the radiologist to discuss it further. (One of the assistants said he would look into that and get back to us... who knows if that will happen or not).
My personal belief is that it might be better to be a little more pro-active with it. Of course I don't want Charles to have to go through any of this anyway, but... waiting has proven not to have been beneficial as far as I'm concerned. Of course it all worked out well because he got a good doctor and he's OK, etc but... if he hadn't waited, if they had done something about the tumor earlier, we wouldn't be in this predicament. None of the 3 neurosurgeons he spoke with found any evidence that the tumor was wrapped around the optic nerve. As of August, they were saying that it was resting on it and but not wrapped around it which was great! But turns out it was wrapped around it. So I think either that happened quickly or it was was wrapped around it in August and they just couldn't tell based on the scans (like now they said the tumor doesn't even show up). And the question is WHEN did it become wrapped around it. If he had had surgery earlier, would the doctor have been able to resect 100% of the tumor and the radiosurgery wouldn't even be an issue? So my thought is that why should we wait for the tumor to cause a problem again and deal with it then? It's all a measure of risk, I know that. There is risks for not doing it, but there are risks for doing it as well. We'll take it 1 step at a time and I will not worry about it. We can do research and we can talk to the radiologist and we can go from there.
Charles has another appointment for a 3 month MRI on January 13th.
They said he could go back to work whenever he wants, just to give it at least 4 weeks. We're thinking 6 weeks can't hurt, we'll see how he's feeling... I think it's something to be very careful with because his job is SO physically demanding. And they said that a gradual return to work is fine (I wanted to see if they could put that down on his return to work instructions, I think it's VERY important).
Poor Charles had a moment of happiness... Dr. Black said he could drive again when he felt up to it. And then I said something about his seizure, and Dr. Black was like oooh yeah, 6 months from the time of the seizure. Ooooh poor Charles! Dr. Black said that he should stay on the Keppra for a year or so, but that the odds of him having another seizure were very very slim because the tumor is essentially gone.
We asked whether his head pulsating was normal and they said yes. Dr. Black explained something about why it happens but I don't really remember what he said nor did I completely comprehend it at the time. But what we did get out of it was that he does have metal in his head! He has titanium bands which are holding the bone back in place. We hadn't known that before. He said it doesn't register on any metal detectors or anything, which I thought was sad!! It would make life more interesting if it did!! Charles really appreciated that :-p Haha.
He also mentioned to them that he's had some pain/numbness/tingling in his right foot & toes but basically as soon as he said it was his right foot they didn't care... basically that it's not his brain because if it were it would be the left side of his body so it's not there area so they had no concern. If it keeps up though, I'd say he should prob go see a general doctor about it.
That's all I've got for you from the doctor's appointment (ALL, I know, right, because it was so little...)
He's doing well. They said to make sure he gets lots of Vitamin C and he takes about 3 walks a day. Last I knew he was going to try to go out for a little walk before it starts raining again :)
Let me know if you have any questions, right now my brain can't think of what else to say and it's almost time to have lunch with Osh! I've missed my Osh Wednesdays at work :) Though I haven't missed the "at work" part.... ;)
Thanks everyone!!!
~Sue W.
The woman that took the stitches out was quite strange. The whole appointment was kind of weird, everyone was very rushed! The woman came in and acted like we'd met before, which we hadn't, we have no idea who she was...
Getting the stitches out was apparently decently painful. They had been in a little longer than usual because of when they had openings for appointments, and his head is healing pretty well so basically to get the stitches out she had to tear up lots of scabs and disrupt his healing. And of course to start with he had a pretty bad headache and hadn't slept well the night before so getting the stitches out made it even worse. But he's a trooper. From what he said I imagine I'd have cried or made them numb it or something! Hah. I'm a wimp though :) He said he just wanted it over with, and really it only took her a minute to get them all out. It bled in several spots where there had been scabs. And poor Charles has wanted to itch his head SO BADLY!! I told him once in his life he's NOT allowed to pick at his scabs! Haha. I told him he could pick at other scabs all he wants but NOT these ones!!! :) I understand it's hard, but he's doing a good job :)
I brought a list of questions with me and the woman that took his stitches out took them from me and started answering them without us really asking and elaborating what my notes (for myself to ask) had meant. She then took my list of questions and brought them to Dr. Black. The whole thing was kind of strange, I think more so because she was like a crazy whirlwind and never really explained what she was doing. I don't know.
When Dr. Black came in, the first thing he did was confuse me!!! He said Charles was doing really well he looked good, he was pleased how well he was healing and that the MRI after the surgery looked great, there was no tumor remaining. So I was like "whaaaaaaaaa?" Eventually when he was done talking I went back to the issue and said I wanted to clarify, that we had been told that not all of the tumor was removed because some of it was wrapped around the optic nerve. And then Dr. Black was kind of like, 'oh yeah..' I don't remember what he said exactly but we were both thinking he'd forgotten/didn't realize it was Charles, I don't know.. I mean I understand if he doesn't remember everything about Charles's surgery off the top of my head but there's a big difference between there's still tumor and it's all gone! But thankfully he clarified that there IS still tumor, he said a few millimeters in size, and that it DOES NOT show up on the MRI. So that will be really important to know in the future if A) they say the MRI is clean we know there are still tumor cells there and B) if they see tumor cells on the MRI that would mean that they have multiplied since the last MRI.
In addition, he said that the pathology came back that it was benign, but that the rate in which the cells multiplied was 11%, and he said normally it's 6-7%, and then he said "but we don't really know what that means". YAY for underfunded Meningioma research!! /sarcasm. I would assume that it would mean that his tumor is more likely to grow back, or grow back more quickly. But I take it that they don't have any proof of that. That's just my assumption because that would seem to make sense.
On the topic of radiosurgery, Dr. Black explained that there are 2 schools of thought:
1) The tumor is right now the smallest it would ever be so to get in there now and kill the remaining tumor cells would be easier because there are few of them and then maybe we'd be done with it.
2) That right now the tumor is so small it's not going to cause him any problems and it could be fine long term, so if there's no problems why go through a procedure that is harmful to your body and has it's own set of side-effects.
Dr. Black said that he is of the 2nd philosophy, and that doing the radiosurgery wasn't an immediate concern of his. Because I was really interested in knowing if it should be done or not and when he said we could get an appointment with the radiologist to discuss it further. (One of the assistants said he would look into that and get back to us... who knows if that will happen or not).
My personal belief is that it might be better to be a little more pro-active with it. Of course I don't want Charles to have to go through any of this anyway, but... waiting has proven not to have been beneficial as far as I'm concerned. Of course it all worked out well because he got a good doctor and he's OK, etc but... if he hadn't waited, if they had done something about the tumor earlier, we wouldn't be in this predicament. None of the 3 neurosurgeons he spoke with found any evidence that the tumor was wrapped around the optic nerve. As of August, they were saying that it was resting on it and but not wrapped around it which was great! But turns out it was wrapped around it. So I think either that happened quickly or it was was wrapped around it in August and they just couldn't tell based on the scans (like now they said the tumor doesn't even show up). And the question is WHEN did it become wrapped around it. If he had had surgery earlier, would the doctor have been able to resect 100% of the tumor and the radiosurgery wouldn't even be an issue? So my thought is that why should we wait for the tumor to cause a problem again and deal with it then? It's all a measure of risk, I know that. There is risks for not doing it, but there are risks for doing it as well. We'll take it 1 step at a time and I will not worry about it. We can do research and we can talk to the radiologist and we can go from there.
Charles has another appointment for a 3 month MRI on January 13th.
They said he could go back to work whenever he wants, just to give it at least 4 weeks. We're thinking 6 weeks can't hurt, we'll see how he's feeling... I think it's something to be very careful with because his job is SO physically demanding. And they said that a gradual return to work is fine (I wanted to see if they could put that down on his return to work instructions, I think it's VERY important).
Poor Charles had a moment of happiness... Dr. Black said he could drive again when he felt up to it. And then I said something about his seizure, and Dr. Black was like oooh yeah, 6 months from the time of the seizure. Ooooh poor Charles! Dr. Black said that he should stay on the Keppra for a year or so, but that the odds of him having another seizure were very very slim because the tumor is essentially gone.
We asked whether his head pulsating was normal and they said yes. Dr. Black explained something about why it happens but I don't really remember what he said nor did I completely comprehend it at the time. But what we did get out of it was that he does have metal in his head! He has titanium bands which are holding the bone back in place. We hadn't known that before. He said it doesn't register on any metal detectors or anything, which I thought was sad!! It would make life more interesting if it did!! Charles really appreciated that :-p Haha.
He also mentioned to them that he's had some pain/numbness/tingling in his right foot & toes but basically as soon as he said it was his right foot they didn't care... basically that it's not his brain because if it were it would be the left side of his body so it's not there area so they had no concern. If it keeps up though, I'd say he should prob go see a general doctor about it.
That's all I've got for you from the doctor's appointment (ALL, I know, right, because it was so little...)
He's doing well. They said to make sure he gets lots of Vitamin C and he takes about 3 walks a day. Last I knew he was going to try to go out for a little walk before it starts raining again :)
Let me know if you have any questions, right now my brain can't think of what else to say and it's almost time to have lunch with Osh! I've missed my Osh Wednesdays at work :) Though I haven't missed the "at work" part.... ;)
Thanks everyone!!!
~Sue W.
Monday, October 5, 2009
2 weeks post-op
Now that I'm back at work and stuck in front of my computer for 8.5 hours a day, I think I might update more. Updating this isn't as interesting as napping or watching TV, but it is more interesting than doing work! :)
Charles is still doing well! Today is his first day home alone since before the surgery! He says it hasn't been too exciting.. watching TV (nothing good is on of course) and napping. He's supposed to have dinner ready for me when I get home tonight, we'll see how that goes! Of course I had to remind him this morning to plan ahead and bake the sweet potatoes because our microwave stopped working yesterday! AWESOME :( I need to find the papers and receipt for it so I can take it back to Best Buy. Ugh. Poor Charlie, his instant mashed potatoes were still cold :(
Tomorrow is the appointment to get his stitches out! YAY! Also our opportunity to get more information from Dr. Black about exactly how the surgery went, how his recovery is looking, going back to work, and getting more info on radiosurgery in the future. Hopefully I will let you know later this week how that meeting went!
Tomorrow is also our 1.5 year anniversary, YAY! And 6 months since we brought home our kitties! And they still don't really like each other :( But at least they both love us both!!!
I need to look around for my digital camera tonight to see if I can get a good photo of his stitches before they are taken out. Maybe I forgot to say here because when I was talking to Greg at work today he seemed surprised when I told him how large the incision is: it goes from the middle of his forehead right below his hairline and follows behind his hairline all the way to the middle of his ear! It stops right in front of of the ear canal!
I have to say, so far, his recovery has been uneventful... THANK GOODNESS!!! :) Nothing too weird going on! He's been doing just fine. We haven't seen anything funky going on with the incision site other than it just healing and scabbing up. He's been feeling fine, no sign of infection. And thankfully he's been off his meds for about a week now so that wouldn't be keeping the infection from being known if he had one. His eyesight is fine, he says there's no real difference between his left and right eyes, just that he needs new glasses! He will probably get an appointment with a neuro-ophthalmologist just for good measure.
He's looking forward to asking Dr. Black when he can drive again! We'll see how that goes........!
He stopped by work last Friday to pick up his check and visit with people.. and show off his battle wound! I laughed at him as I watched him walking towards the building moving his hair out of the way so his entire scar is more visible. :)
His brother Rob stopped by on Sunday on his way back from a Red Sox game which was nice! Charlie was very happy to see him... although disappointed that he hadn't come with Victoria & Braden! They chatted and played some Wii Sports Resort. Visitors have been making Charles very happy. He's always smiling and upbeat during and afterwards... until he crashes. We even went out to Trivia last Thursday with some of our friends and Charles had a great time (as we all did!) and he helped clinch the win because he got the final question right which kept us in the lead- he knew that the #1 hit by the Starland Vocal Band was Afternoon Delight! Oh Charles and his 70's music :)
Charles noticed the other day that where his dent is, you could actually see his head throbbing.. it was pulsating, it's quite weird but.. there's nothing obviously wrong with it (unless someone writes to me to say its a bad thing!). I told him to just be careful about any pressure going to his head. Poor Charles has to put up with me nagging him about not bending over and not picking things up! It's a good thing he likes me and he's sensible enough to know it's just because I care! :)
Charles is still doing well! Today is his first day home alone since before the surgery! He says it hasn't been too exciting.. watching TV (nothing good is on of course) and napping. He's supposed to have dinner ready for me when I get home tonight, we'll see how that goes! Of course I had to remind him this morning to plan ahead and bake the sweet potatoes because our microwave stopped working yesterday! AWESOME :( I need to find the papers and receipt for it so I can take it back to Best Buy. Ugh. Poor Charlie, his instant mashed potatoes were still cold :(
Tomorrow is the appointment to get his stitches out! YAY! Also our opportunity to get more information from Dr. Black about exactly how the surgery went, how his recovery is looking, going back to work, and getting more info on radiosurgery in the future. Hopefully I will let you know later this week how that meeting went!
Tomorrow is also our 1.5 year anniversary, YAY! And 6 months since we brought home our kitties! And they still don't really like each other :( But at least they both love us both!!!
I need to look around for my digital camera tonight to see if I can get a good photo of his stitches before they are taken out. Maybe I forgot to say here because when I was talking to Greg at work today he seemed surprised when I told him how large the incision is: it goes from the middle of his forehead right below his hairline and follows behind his hairline all the way to the middle of his ear! It stops right in front of of the ear canal!
I have to say, so far, his recovery has been uneventful... THANK GOODNESS!!! :) Nothing too weird going on! He's been doing just fine. We haven't seen anything funky going on with the incision site other than it just healing and scabbing up. He's been feeling fine, no sign of infection. And thankfully he's been off his meds for about a week now so that wouldn't be keeping the infection from being known if he had one. His eyesight is fine, he says there's no real difference between his left and right eyes, just that he needs new glasses! He will probably get an appointment with a neuro-ophthalmologist just for good measure.
He's looking forward to asking Dr. Black when he can drive again! We'll see how that goes........!
He stopped by work last Friday to pick up his check and visit with people.. and show off his battle wound! I laughed at him as I watched him walking towards the building moving his hair out of the way so his entire scar is more visible. :)
His brother Rob stopped by on Sunday on his way back from a Red Sox game which was nice! Charlie was very happy to see him... although disappointed that he hadn't come with Victoria & Braden! They chatted and played some Wii Sports Resort. Visitors have been making Charles very happy. He's always smiling and upbeat during and afterwards... until he crashes. We even went out to Trivia last Thursday with some of our friends and Charles had a great time (as we all did!) and he helped clinch the win because he got the final question right which kept us in the lead- he knew that the #1 hit by the Starland Vocal Band was Afternoon Delight! Oh Charles and his 70's music :)
Charles noticed the other day that where his dent is, you could actually see his head throbbing.. it was pulsating, it's quite weird but.. there's nothing obviously wrong with it (unless someone writes to me to say its a bad thing!). I told him to just be careful about any pressure going to his head. Poor Charles has to put up with me nagging him about not bending over and not picking things up! It's a good thing he likes me and he's sensible enough to know it's just because I care! :)
Wednesday, September 30, 2009
My plan for a good update has yet to happen... sorry :( Stress and fatigue and laziness and Stargate are my excuses! I just wanted to add a couple things that I thought people would be interested to know.
He's off all his new meds basically. He took his last steroid yesterday morning so hopefully that will help him sleep better at night which was something he had problems with the last time he was on the steroids. He also hasn't taken any of his heavy duty pain meds in the last couple days which is awesome! He's just been treating any pain with tylenol and hasn't even been using the ice pack much if at all. All good news!
His insision is kind of yukky looking with some scabbing and some dried blood that we haven't touched since the operation, not wanting to bother with anything (whether that's good or not I'm not sure?) it definitely looks like it's healing now! It looks much more healed than it did a few days ago! And there is no oozing of any kind, so I don't think there's any infection or leaky brain fluid or anything... keep your fingers crossed that it continues to heal well!!
His appointment to remove the sutures is next Tuesday, which will be 15 days from the operation. They had first suggested today for an opening but we agreed Tuesday would be better in case they sent us home to return again in a week because it wasn't healed enough! That would have stunk.
He's been out a few times in the last couple of days. Sunday before his mom returned to Albany we went to Target for a couple things and we went out for dinner. It definitely tired him out, but he enjoyed it! Of course, the power cart thing at Target wasn't charged which was a dissapointment, because it was a good opportunity to get away with driving one! Haha. Though I think the patrons AND merchandise of Target were safer with that not happening ;) Yesterday we went to The Christmas Tree Shop and to get some cider and donuts at an apple orchard (Oh the things he can get away with because I love him so...). And today we took a walk, probably a half mile round trip to so, just down the road and back. It was good for us both :) Of course I do my share of encouraging him to go out and harassing him not to over-do it! He's not a cooped-up type person and it's driving him crazy! He wants to do a lot more than he's capable. But he's going ok taking it in stride I think. He decided when we should turn around walking, and he decided not to attempt to go apple picking this weekend with some friends because that would be too much.
I'm hoping my parents will come visit us Saturday and we can go out to dinner for my Dad's birthday. And even if that doesn't happen, we're going to go on a date sometime in the next week anyway, since on Tuesday we'll have been together for a year and a half! :-D It seems like a long time but not all at once. We've known each other for going on 6 years and we've been through A LOT in this past year and a half! I wouldn't trade crazy old broken Charles Horn for anything! :) And I know he feels the same. Yatta!
He's off all his new meds basically. He took his last steroid yesterday morning so hopefully that will help him sleep better at night which was something he had problems with the last time he was on the steroids. He also hasn't taken any of his heavy duty pain meds in the last couple days which is awesome! He's just been treating any pain with tylenol and hasn't even been using the ice pack much if at all. All good news!
His insision is kind of yukky looking with some scabbing and some dried blood that we haven't touched since the operation, not wanting to bother with anything (whether that's good or not I'm not sure?) it definitely looks like it's healing now! It looks much more healed than it did a few days ago! And there is no oozing of any kind, so I don't think there's any infection or leaky brain fluid or anything... keep your fingers crossed that it continues to heal well!!
His appointment to remove the sutures is next Tuesday, which will be 15 days from the operation. They had first suggested today for an opening but we agreed Tuesday would be better in case they sent us home to return again in a week because it wasn't healed enough! That would have stunk.
He's been out a few times in the last couple of days. Sunday before his mom returned to Albany we went to Target for a couple things and we went out for dinner. It definitely tired him out, but he enjoyed it! Of course, the power cart thing at Target wasn't charged which was a dissapointment, because it was a good opportunity to get away with driving one! Haha. Though I think the patrons AND merchandise of Target were safer with that not happening ;) Yesterday we went to The Christmas Tree Shop and to get some cider and donuts at an apple orchard (Oh the things he can get away with because I love him so...). And today we took a walk, probably a half mile round trip to so, just down the road and back. It was good for us both :) Of course I do my share of encouraging him to go out and harassing him not to over-do it! He's not a cooped-up type person and it's driving him crazy! He wants to do a lot more than he's capable. But he's going ok taking it in stride I think. He decided when we should turn around walking, and he decided not to attempt to go apple picking this weekend with some friends because that would be too much.
I'm hoping my parents will come visit us Saturday and we can go out to dinner for my Dad's birthday. And even if that doesn't happen, we're going to go on a date sometime in the next week anyway, since on Tuesday we'll have been together for a year and a half! :-D It seems like a long time but not all at once. We've known each other for going on 6 years and we've been through A LOT in this past year and a half! I wouldn't trade crazy old broken Charles Horn for anything! :) And I know he feels the same. Yatta!
Tuesday, September 29, 2009
Ok just a quick little important note: Charles' vision in his right eye is just about back to perfect. He said there might be a little haze but it's negligible and it's not really much different than his left eye and basically it looks like before and he needs a new prescription for his glasses & contacts. So, YAY! And Suzanne called us to let us know that her friend Susie's husband Dr. Samuels, of Neurology at BWH, said it was very good that his vision was so much better and that was really the only thing that had been worrisome. So, YAY! Suck it, Kirby!
Monday, September 28, 2009
Thursday, September 24, 2009
Wednesday, September 23, 2009
Tuesday, September 22, 2009
HMM just saw that a few of my text updates came up as a bunch of characters... I have edited those with what they were supposed to say. You'll find them marked with [EDIT].
Charles is in for an MRI now, so hopefully they will have some more info for us tonight on how his brain is looking! He has the drain tube removed which has made him feel better without the pressure of that bothering him. Catheter has been removed and he's basically off everything but monitors. They're trying to keep him on oxycodone rather than the dilaudid because that would keep him drowsy. We'll see how that goes! He was asking for pain meds a lot more frequently than they were supposed to give to him over the night and this morning.
They have aim approved to move out of the neuro-ICU once there is a bed open on the regular neuro floor. They also have him in for food (not sure if he will get solids or liquids at this point) but he has to wait until after his MRI for that. They have to lay him flat for the MRI and he needs to keep his head elevated because pressure will build up, so he will probably be feeling pretty crappy after the MRI. They have to do everything possible to keep him from vomiting becuase it will put too much pressure on his brain. He was nauseated a little bit at one point last night but it didn't last long and got better and they gave him an injection to help keep him from vomiting. He hasn't had any other nausea besides that. He's also lucky he doesn't really have a sore throat from the breating tube or anything. He's doing pretty well just the sore head and jaw.
He's looking forward to seeing some friends tonight that are coming to visit for a little while :)
I'm doing pretty well, I got quite a few hours of sleep last night in the recliner. I have no idea what my plans are for tonight. Poor Suzanne was trying to get answers out of me that I couldn't give her! It all depends on how Charles is feeling and what the rules are for the non-ICU units, etc etc! But I'll keep in touch!
Not sure what else there is to say, I'm sure there's more but I'm not sure! Feel free to text me anything you'd like to know! I've read some of the comments, I wish I had the energy to reply to them all, but I don't. So I just wanted to say thank you to everyone!! Please keep Charles in your thoughts and prayers that his recovery continues to go well! Hopefully he will be OK. If it gets infected it probably wont happen for several days, but lets hope that doesn't happen!!! :)
Thanks so much everyone! You're the best, Charles and I are SO lucky to have such great friends and family!!
Charles is in for an MRI now, so hopefully they will have some more info for us tonight on how his brain is looking! He has the drain tube removed which has made him feel better without the pressure of that bothering him. Catheter has been removed and he's basically off everything but monitors. They're trying to keep him on oxycodone rather than the dilaudid because that would keep him drowsy. We'll see how that goes! He was asking for pain meds a lot more frequently than they were supposed to give to him over the night and this morning.
They have aim approved to move out of the neuro-ICU once there is a bed open on the regular neuro floor. They also have him in for food (not sure if he will get solids or liquids at this point) but he has to wait until after his MRI for that. They have to lay him flat for the MRI and he needs to keep his head elevated because pressure will build up, so he will probably be feeling pretty crappy after the MRI. They have to do everything possible to keep him from vomiting becuase it will put too much pressure on his brain. He was nauseated a little bit at one point last night but it didn't last long and got better and they gave him an injection to help keep him from vomiting. He hasn't had any other nausea besides that. He's also lucky he doesn't really have a sore throat from the breating tube or anything. He's doing pretty well just the sore head and jaw.
He's looking forward to seeing some friends tonight that are coming to visit for a little while :)
I'm doing pretty well, I got quite a few hours of sleep last night in the recliner. I have no idea what my plans are for tonight. Poor Suzanne was trying to get answers out of me that I couldn't give her! It all depends on how Charles is feeling and what the rules are for the non-ICU units, etc etc! But I'll keep in touch!
Not sure what else there is to say, I'm sure there's more but I'm not sure! Feel free to text me anything you'd like to know! I've read some of the comments, I wish I had the energy to reply to them all, but I don't. So I just wanted to say thank you to everyone!! Please keep Charles in your thoughts and prayers that his recovery continues to go well! Hopefully he will be OK. If it gets infected it probably wont happen for several days, but lets hope that doesn't happen!!! :)
Thanks so much everyone! You're the best, Charles and I are SO lucky to have such great friends and family!!
Monday, September 21, 2009
In Recovery
*BIG DEEP BREATH*
Charles is out of surgery and in recovery. The recovery and neuro-ICU are the same so he's still very much asleep. They just gave him some morphine for pain.
AHHH I can't type worth a crap!
Dr. Black came in and said he was doing great, the surgery went really well no major complications. The only thing is that they were NOT able to remove all of the tumor :( There was some that had wrapped around the optic nerve and if they had tried getting any more of the tumor out he could have lost his vision in his right eye. So the plan is to keep an eye on the tumor, make sure it doesn't grow or cause any more problems. If it does become a problem then he will need radiation (stereotactic radiosurgery/GammaKnife, etc) to kill the tumor cells.
OK I'm sorry I'm still all worried about all the negatives and I'm not WAHOO HE'S OK! I'm crappy :( TOO MUCH STRESS. But, WAHOO, HE'S OK! He knew who we were, he can see, etc. His brain functions seem fine. He's still normal Charles, the first thing he said when we saw him was "where's my bacon from Abby??" Thankfully it wasn't wanting to know where Kirby was because in the mad dash to go see him I forgot to grab his plastic Kirby representation that we stuffed in a zip lock (the mason jar opening was too small to fit Kirby AND his frying pan through).
Once I calm down more and he's more alive I'll be happier. Probably once he's conscious enough to make me smile all the time like normal! :)
I'm just stuck on the fact that while I know it's never over, I was REALLY hoping they would get 100% of the tumor, and the 3 neurosurgeons that looked at his MRIs all said it WASN'T wrapped around the optic nerve so I think that JUST happened recently- having to do with the fact that his vision started getting foggy a couple weeks ago. The fog is still there, but I dont think any worse than it was. BUT he's not blind in that eye so that's awesome!! And he doesn't have any sexy black eyes either.
I'm just not looking forward to when he's fully conscious and finds out that they shaved off one of his sideburns!! Ooooh that's not gonna be a happy time! That might possibly be one of the things he'll be most upset about ;)
Though overall... I'm disappointed because I really wanted to be able to tell him he was ok and Kirby was gone. But... he's not 100% gone :( There's Kirby Poop on his eye nerve!!!
THINK HAPPY THOUGHTS!
HE'S ALIVE AND WELL AND WE WILL LIVE HAPPILY EVER AFTER!!!!!
And as Abby keeps reminding me trying to keep me upbeat, his (wonderfully crazy) personality hasn't changed and that's the most important thing :)
YAAAAAAAY CHARLES!!!
We'll know more about how he's feeling and everything later but for now, that's my update!
*KEEL OVER TIME*
Love, Sue W.
Charles is out of surgery and in recovery. The recovery and neuro-ICU are the same so he's still very much asleep. They just gave him some morphine for pain.
AHHH I can't type worth a crap!
Dr. Black came in and said he was doing great, the surgery went really well no major complications. The only thing is that they were NOT able to remove all of the tumor :( There was some that had wrapped around the optic nerve and if they had tried getting any more of the tumor out he could have lost his vision in his right eye. So the plan is to keep an eye on the tumor, make sure it doesn't grow or cause any more problems. If it does become a problem then he will need radiation (stereotactic radiosurgery/GammaKnife, etc) to kill the tumor cells.
OK I'm sorry I'm still all worried about all the negatives and I'm not WAHOO HE'S OK! I'm crappy :( TOO MUCH STRESS. But, WAHOO, HE'S OK! He knew who we were, he can see, etc. His brain functions seem fine. He's still normal Charles, the first thing he said when we saw him was "where's my bacon from Abby??" Thankfully it wasn't wanting to know where Kirby was because in the mad dash to go see him I forgot to grab his plastic Kirby representation that we stuffed in a zip lock (the mason jar opening was too small to fit Kirby AND his frying pan through).
Once I calm down more and he's more alive I'll be happier. Probably once he's conscious enough to make me smile all the time like normal! :)
I'm just stuck on the fact that while I know it's never over, I was REALLY hoping they would get 100% of the tumor, and the 3 neurosurgeons that looked at his MRIs all said it WASN'T wrapped around the optic nerve so I think that JUST happened recently- having to do with the fact that his vision started getting foggy a couple weeks ago. The fog is still there, but I dont think any worse than it was. BUT he's not blind in that eye so that's awesome!! And he doesn't have any sexy black eyes either.
I'm just not looking forward to when he's fully conscious and finds out that they shaved off one of his sideburns!! Ooooh that's not gonna be a happy time! That might possibly be one of the things he'll be most upset about ;)
Though overall... I'm disappointed because I really wanted to be able to tell him he was ok and Kirby was gone. But... he's not 100% gone :( There's Kirby Poop on his eye nerve!!!
THINK HAPPY THOUGHTS!
HE'S ALIVE AND WELL AND WE WILL LIVE HAPPILY EVER AFTER!!!!!
And as Abby keeps reminding me trying to keep me upbeat, his (wonderfully crazy) personality hasn't changed and that's the most important thing :)
YAAAAAAAY CHARLES!!!
We'll know more about how he's feeling and everything later but for now, that's my update!
*KEEL OVER TIME*
Love, Sue W.
IT'S BACOOOON!
ABBY BROUGHT HIM BACON!!!!! HAHAHAHAHAHA!!!
I can't wait to see his reaction! :)
Unfortunately he won't be able to eat it anytime soon!
I can't wait to see his reaction! :)
Unfortunately he won't be able to eat it anytime soon!
Waiting Time
Hello Hello!
Charles is in surgery. They took him in right at 7:30 as planned, it all went smoothly. There were lots of very nice friendly people who were tending to him and of course he is a wonderful patient cracking jokes with everyone up until they knocked him out I'm sure! :) He asked one of the surgeons if he can get a two-for-one deal and and they can operate on his mother to take out some of her annoying-ness. Haha.
I'm hanging out in the waiting area. They have a very nice set up with a bunch of chairs and tables and little alcoves of chairs and couches and a couple little TV rooms. They also have a bank of 4 computers and printers that people can use, which is very nice for updating!!
Right now his mom is in our spot in the TV room unenthusiastically watching Regis & Kelly and I decided to hop on here for an update. My friend Abby is on her way to hang out and try to keep my mind occupied while we wait. She's stuck in traffic of course. YAAAAAY BOSTON. Sarcasm. Haha. But YAY for good hospitals and doctors!!
We got more messages of "ooh you got Dr. Black he's the best doctor!" from the other employees of the hospital :)
I teared up some right before they took Charles from the pre-op area but I've been OK since. I thought I'd have a meltdown after they took him but thankfully we were preoccupied a bit being shuffled around and what not and I haven't... which I'm glad about! I just heard someone crying from here and it makes me sad :( I hope that everyone is ok.....
I've got 2 big reusable grocery bags I'm carrying around with me. One of them is filled with board and card games and some books (I don't have the mental capacity to read!! SO TIRED!!) and one is filled with JUNK FOOD. I was stressed out about the surgery on Saturday and ended up stocking up on junk food! Haha. I bought chocolate chip cookies in 3 different forms. I love cookies.
ANNNNNNNNNNYWAY....
Back to Charles. They said that they get updates on how the surgery is doing in this Patient Liaison area (wow I really didn't know to spell liason! and blogger spell check still says its wrong...) and they will let us know how far along they are. And they can call down to the OR and see how things are going and stuff. We've still got many hours to wait here. They said around 1:00-2:00 the surgery should be done and we can hear from Dr. Black how it went. KEEP YOUR FINGERS CROSSED that everything goes as planned! NO SURPRISES (unless they're good!) :)
Sorry not much interesting to say now, just waiting waiting waiting! I'll let you know when I know more.
Off to Fish for Charles on FishWrangler now!
Keep sending him your happy thoughts!
Love, Sue W.
Charles is in surgery. They took him in right at 7:30 as planned, it all went smoothly. There were lots of very nice friendly people who were tending to him and of course he is a wonderful patient cracking jokes with everyone up until they knocked him out I'm sure! :) He asked one of the surgeons if he can get a two-for-one deal and and they can operate on his mother to take out some of her annoying-ness. Haha.
I'm hanging out in the waiting area. They have a very nice set up with a bunch of chairs and tables and little alcoves of chairs and couches and a couple little TV rooms. They also have a bank of 4 computers and printers that people can use, which is very nice for updating!!
Right now his mom is in our spot in the TV room unenthusiastically watching Regis & Kelly and I decided to hop on here for an update. My friend Abby is on her way to hang out and try to keep my mind occupied while we wait. She's stuck in traffic of course. YAAAAAY BOSTON. Sarcasm. Haha. But YAY for good hospitals and doctors!!
We got more messages of "ooh you got Dr. Black he's the best doctor!" from the other employees of the hospital :)
I teared up some right before they took Charles from the pre-op area but I've been OK since. I thought I'd have a meltdown after they took him but thankfully we were preoccupied a bit being shuffled around and what not and I haven't... which I'm glad about! I just heard someone crying from here and it makes me sad :( I hope that everyone is ok.....
I've got 2 big reusable grocery bags I'm carrying around with me. One of them is filled with board and card games and some books (I don't have the mental capacity to read!! SO TIRED!!) and one is filled with JUNK FOOD. I was stressed out about the surgery on Saturday and ended up stocking up on junk food! Haha. I bought chocolate chip cookies in 3 different forms. I love cookies.
ANNNNNNNNNNYWAY....
Back to Charles. They said that they get updates on how the surgery is doing in this Patient Liaison area (wow I really didn't know to spell liason! and blogger spell check still says its wrong...) and they will let us know how far along they are. And they can call down to the OR and see how things are going and stuff. We've still got many hours to wait here. They said around 1:00-2:00 the surgery should be done and we can hear from Dr. Black how it went. KEEP YOUR FINGERS CROSSED that everything goes as planned! NO SURPRISES (unless they're good!) :)
Sorry not much interesting to say now, just waiting waiting waiting! I'll let you know when I know more.
Off to Fish for Charles on FishWrangler now!
Keep sending him your happy thoughts!
Love, Sue W.
En Route
In the car on the way to the hospital... if we get there in once piece :-D I'm running off hmmmm half hour of sleep maybe? GOOD TIMES! at least Charlie slept.
Sunday, September 20, 2009
Welcome to Kirby's Nightmare
Charles picked out the name for the blog... "Welcome to Kirby's Nightmare" as a reference to Alice Cooper. He wanted to get the video or the song up on the site, but we just don't have time to do it. So this is as good as I can get it :)
Enjoy
Enjoy
T-1 day
I finally sent out the email to people I know with the blog link, hopefully everyone who would want it will get the link and be able to follow along :)
I will be limited in my ability to update, but thankfully I CAN update via my cell phone with quick messages to let you know the essentials. Other than that I'll have to update from the lobby computers at the hotel at any point I am there. I'm still not sure how often I will be at the hotel and how much time I'll be spending a the hospital. In the past when Charles has been hospitalized I stayed with him basically 24/7, so we'll see what happens this time. I know I need to consider the fact that I need to be OK to take care of him once he's discharged so spending the week sleeping in a chair might not be my best option. We also don't know the policies of BWH.. though the visiting hours at UMASS never stopped me :)
We're overwhelmed at the moment (ok well I definitely am, Charlie is a trooper) with everything we still need to do... we were busy all day yesterday trying to clean and shop and pack and we didn't get anywhere near as much done as we wanted to. Today we have plans to go to The Big E in W. Springfield Mass with some of our friends.. so we've got a few hours before that to get more done and then we probably just won't make it out to the hotel in Waltham until late. I'm not that worried about not getting sleep tonight... I'd rather spend time with Charles having fun and not worry about it. I figure he's gonna get some NICE sleep tomorrow.. and I'll be too worried to sleep tonight anyway :)
I'm sure I'll be thinking twice about that when I have to wake up at 4AM!
I will be limited in my ability to update, but thankfully I CAN update via my cell phone with quick messages to let you know the essentials. Other than that I'll have to update from the lobby computers at the hotel at any point I am there. I'm still not sure how often I will be at the hotel and how much time I'll be spending a the hospital. In the past when Charles has been hospitalized I stayed with him basically 24/7, so we'll see what happens this time. I know I need to consider the fact that I need to be OK to take care of him once he's discharged so spending the week sleeping in a chair might not be my best option. We also don't know the policies of BWH.. though the visiting hours at UMASS never stopped me :)
We're overwhelmed at the moment (ok well I definitely am, Charlie is a trooper) with everything we still need to do... we were busy all day yesterday trying to clean and shop and pack and we didn't get anywhere near as much done as we wanted to. Today we have plans to go to The Big E in W. Springfield Mass with some of our friends.. so we've got a few hours before that to get more done and then we probably just won't make it out to the hotel in Waltham until late. I'm not that worried about not getting sleep tonight... I'd rather spend time with Charles having fun and not worry about it. I figure he's gonna get some NICE sleep tomorrow.. and I'll be too worried to sleep tonight anyway :)
I'm sure I'll be thinking twice about that when I have to wake up at 4AM!
Wednesday, September 16, 2009
Pre-op
Pre-op was today. It was..... unexciting. Took samples of various bodily fluids, did another MRI and gave us the low-down on generic craniotomy details. Nothing too interesting. The nurse was sweet and was very excited to call Charles "Charlie", she said it's one of the names she had wanted to name one of her children and she loves it :) Charles was also happy that she knew who Kirby was and she thought it was hysterical that he named the tumor Kirby and she was very impressed with his good attitude! She said that it's a pleasure to meet with someone so positive because most people in that situation aren't and it brightens her day.
The thing I found the most interesting was that she said they have a 1:1 ratio in the ICU. Once he is done with his surgery they'll ship him straight to the ICU where he will have 1 nurse who will only tend to him. I think that's pretty awesome!
In general the hospital was pretty good.. we had to wait at times but it wasn't too bad and we actually got into the MRI an hour ahead of schedule and were able to leave before the MRI was even scheduled to start! Very nice indeed.
And now we're off to watch another episode of Stargate and hit the sack. It's been a long and tiring day for us both.
~Sue W.
The thing I found the most interesting was that she said they have a 1:1 ratio in the ICU. Once he is done with his surgery they'll ship him straight to the ICU where he will have 1 nurse who will only tend to him. I think that's pretty awesome!
In general the hospital was pretty good.. we had to wait at times but it wasn't too bad and we actually got into the MRI an hour ahead of schedule and were able to leave before the MRI was even scheduled to start! Very nice indeed.
And now we're off to watch another episode of Stargate and hit the sack. It's been a long and tiring day for us both.
~Sue W.
Tuesday, September 15, 2009
Kirby VS Dr. Mario
Actually, that's Dr. Black.
Dr. Black is the surgeon who will be performing Charles' craniotomy on Monday. He's one of THE BEST neurosurgeons in the world for meningioma patients! He's the Chief of the Neurosurgical unit at Brigham & Womens and he has a ton of other distinctions and positions. He was even recently named President-Elect of the World Federation of Neurosurgical Societies!
Originally Charles met with Dr. Mara in Albany, and then after his seizure in August he saw Dr. Moser at Umass in Worcester, MA. However, I saw no reason not to try to get the best doctor for Charles that we could. Even if he doesn't have a malignant immediately life threatening tumor it's still BRAIN SURGERY! So I did some research and one of the names that kept popping up was Dr. Peter Black. So I did a little more research on him and found out that he has specific interest in Meningiomas and he's associated with The Meningioma Project. Pretty neat!
I then contacted a co-worker who had undergone brain surgery last year and I asked him if he had an advice on neurosurgeons. He sent me a wonderfully helpful response that untilmately gave rave reviews for Dr. Black. I shared the email with Charles' mom, and she was very interested because she knew that the husband of one of her high school friends worked in the Neurology department of Brigham & Womens! Small world! Ultimately Dr. Black actually emailed Charles to initiate setting up an appointment to see him, thanks to Suzanne's wonderful friends!
We all thought, it was meant to be.
We definitely feel more at ease knowing that one of the best doctors out there is going to be working on our Charlie. He deserves the best :)
We went to meet with him in Boston last month. BOSTON. I had to drive into BOSTON! Thankfully it's just off Rt 9 and only a few miles past the furthest east I'd driven before (which was actually Brigham & Women's ambulatory care center in Chestnut Hill... my Primary Care is still through B&W even though I moved out of Newton) and it wasn't too bad. THANK GOODNESS! And the most exciting part? Even though we waited HOURS to see the doctor (he was in surgery, that was more important! It's all good!) they gave us a neat little pager like they do when you have to wait in line at a restaurant and told us we could wander around, so we did! I was quite amused. Big fancy newfangled city hospitals! I bought a cookie.
Oh and Dr. Black seemed nice :)
Yay for technology!
NEAT!
I just set it up so I can post some short messages to this blog by texting from my cell phone! That will be handy if I don't have a computer nearby or I just have a quick thing to say :) Or if there is a computer nearby and Charles is too busy playing FishWrangler on Facebook to let me update the blog. Which he already said would happen if his mom lets him use her laptop at the hospital :-D PRIORITIES!
Pre-op testing is tomorrow in Boston... we both have the day off because it's probably going to take all day. I just hope we don't get stuck in too much traffic.
I'll try to get Charles to write something here when he's not busy working, stocking us up with yummy food, sleeping, playing FishWrangler or getting attacked by our cats (they're sweet, really! Fiona just seems to like the taste of human flesh...)
I just set it up so I can post some short messages to this blog by texting from my cell phone! That will be handy if I don't have a computer nearby or I just have a quick thing to say :) Or if there is a computer nearby and Charles is too busy playing FishWrangler on Facebook to let me update the blog. Which he already said would happen if his mom lets him use her laptop at the hospital :-D PRIORITIES!
Pre-op testing is tomorrow in Boston... we both have the day off because it's probably going to take all day. I just hope we don't get stuck in too much traffic.
I'll try to get Charles to write something here when he's not busy working, stocking us up with yummy food, sleeping, playing FishWrangler or getting attacked by our cats (they're sweet, really! Fiona just seems to like the taste of human flesh...)
Welcome
Hello,
This past month and a half have been interesting, that's for sure. Though as you know, any time involving Charles is sure to be interesting! :) (And that's why we love him!)
Charles and I wanted to set up this blog so that friends and family could keep up to date on Charles' surgery and recovery. At this point I'm not sure what access I will have to a computer the week that he is in the hospital, but I will do my best! At the very least hopefully the hotel will have a computer in the lobby that I can use... If I'm ever at the hotel.
We want to thank the friends and family who have helped so much so far. We appreciate everything that has been done to help- driving Miss Daisy to work, helping locate a neurosurgeon, get well cards, prayers and well wishes to name a few.
Please keep Charles in your thoughts, minds, prayers and hearts through the coming weeks, we'll take all we can get! :)
Love,
Sue W.
CONTACT INFO
Feel free to text me anytime (Sue W.): 978-870-2280
Send any cards (definitely welcome!) to:
Charles Horn
3 Carroll Rd. Apt 3
North Grafton, MA 01536
THE SURGERY
Pre-Op: Wednesday September 16th
Surgery: Monday September 21st
Brigham & Womens Hospital, Boston MA
Peter M. Black, M.D., Ph.D.
The surgery is scheduled for 7:30am and we have to be there for 5:30am... EWWWW!! But at least Charles doesn't have to spend Sunday night in the hospital, so that's all that matters!
The surgery should take 4-5 hours and he is expected to be in the hospital for about 4 days. So we're hoping he'll be discharged by Friday morning if all goes well :)
THE TUMOR
Kirby is what Charles named his brain tumor when he was diagnosed in January '08
Kirby is a Meningioma (see Meningioma Facts below)
The tumor is located behind Charles' right eyebrow area on the lining of his brain. The largest risk (as stated by Dr. Black) would be losing his sense of smell as the olfactory nerve (smell nerve) is in the path the doctor needs to take to remove the tumor. In addition, there is a small risk of blindness in his right eye or stroke as the tumor is touching his right optic nerve and his carotid artery. His odds are better having the surgery than letting the tumor grow where it WILL cause a problem in time. Hopefully there won't be ANY of those problems! :) In addition, like any surgery there could be an infection, which we probably wouldn't get any sign of until he's been home for a while. Let's hope that doesn't happen either! But just don't send him any of your germs ok?? :)
Meningiomas are slow-growing tumors that often cause no problems but can cause problems because it puts pressure on the brain which can cause swelling and make the brain generally unhappy! In addition, in Charles' case the tumor is located in a sensitive area where it could potentially damage important nerves. Luckily for Charles his tumor was diagnosed soon enough that not many problems have occurred for him so far. While the tumor is touching his optic nerve and carotid artery, it is not involved with either- it's not wrapped around them or causing any big problems. The doctor should be able to peel the tumor away from those parts and remove them with little or no lasting damage.
MENINGIOMA FACTS
*Meningiomas are the most prevalent primary brain tumor in existence, but very little is known about them because they are mislabeled benign and research is underfunded.
*This is primarily a female disease. Of those diagnosed, 65% are women, but meningiomas are found in men and children as well.
*Even though 90% of meningiomas are classified as benign, they are not without their deficits. They can damage the brain, cause massive disability, life-long seizures and even death.
*The treatment for meningiomas depends on a number of factors, including your general health and the size and position of the tumor. At times, the position of a tumor makes it impossible or too risky to remove surgically. If surgery is not possible, radiation or chemotherapy maybe used to shrink the tumor and destroy cells.
*They have a recurrence rate of 15-20%, which means it is always on the back of a survivor's mind.
*The treatment of these "benign" tumors is the same as for malignant tumors--craniotomy, spinal surgery, radiation or chemotherapy.
*There is very little funding for research, emotional support and financial assistance for the victims because of the benign classification. Anyone can donate to meningioma research on-line.
The Brain Science Foundation / The Meningioma Project
Meningioma Mommas
This past month and a half have been interesting, that's for sure. Though as you know, any time involving Charles is sure to be interesting! :) (And that's why we love him!)
Charles and I wanted to set up this blog so that friends and family could keep up to date on Charles' surgery and recovery. At this point I'm not sure what access I will have to a computer the week that he is in the hospital, but I will do my best! At the very least hopefully the hotel will have a computer in the lobby that I can use... If I'm ever at the hotel.
We want to thank the friends and family who have helped so much so far. We appreciate everything that has been done to help- driving Miss Daisy to work, helping locate a neurosurgeon, get well cards, prayers and well wishes to name a few.
Please keep Charles in your thoughts, minds, prayers and hearts through the coming weeks, we'll take all we can get! :)
Love,
Sue W.
CONTACT INFO
Feel free to text me anytime (Sue W.): 978-870-2280
Send any cards (definitely welcome!) to:
Charles Horn
3 Carroll Rd. Apt 3
North Grafton, MA 01536
THE SURGERY
Pre-Op: Wednesday September 16th
Surgery: Monday September 21st
Brigham & Womens Hospital, Boston MA
Peter M. Black, M.D., Ph.D.
The surgery is scheduled for 7:30am and we have to be there for 5:30am... EWWWW!! But at least Charles doesn't have to spend Sunday night in the hospital, so that's all that matters!
The surgery should take 4-5 hours and he is expected to be in the hospital for about 4 days. So we're hoping he'll be discharged by Friday morning if all goes well :)
THE TUMOR
Kirby is what Charles named his brain tumor when he was diagnosed in January '08
Kirby is a Meningioma (see Meningioma Facts below)
The tumor is located behind Charles' right eyebrow area on the lining of his brain. The largest risk (as stated by Dr. Black) would be losing his sense of smell as the olfactory nerve (smell nerve) is in the path the doctor needs to take to remove the tumor. In addition, there is a small risk of blindness in his right eye or stroke as the tumor is touching his right optic nerve and his carotid artery. His odds are better having the surgery than letting the tumor grow where it WILL cause a problem in time. Hopefully there won't be ANY of those problems! :) In addition, like any surgery there could be an infection, which we probably wouldn't get any sign of until he's been home for a while. Let's hope that doesn't happen either! But just don't send him any of your germs ok?? :)
Meningiomas are slow-growing tumors that often cause no problems but can cause problems because it puts pressure on the brain which can cause swelling and make the brain generally unhappy! In addition, in Charles' case the tumor is located in a sensitive area where it could potentially damage important nerves. Luckily for Charles his tumor was diagnosed soon enough that not many problems have occurred for him so far. While the tumor is touching his optic nerve and carotid artery, it is not involved with either- it's not wrapped around them or causing any big problems. The doctor should be able to peel the tumor away from those parts and remove them with little or no lasting damage.
MENINGIOMA FACTS
*Meningiomas are the most prevalent primary brain tumor in existence, but very little is known about them because they are mislabeled benign and research is underfunded.
*This is primarily a female disease. Of those diagnosed, 65% are women, but meningiomas are found in men and children as well.
*Even though 90% of meningiomas are classified as benign, they are not without their deficits. They can damage the brain, cause massive disability, life-long seizures and even death.
*The treatment for meningiomas depends on a number of factors, including your general health and the size and position of the tumor. At times, the position of a tumor makes it impossible or too risky to remove surgically. If surgery is not possible, radiation or chemotherapy maybe used to shrink the tumor and destroy cells.
*They have a recurrence rate of 15-20%, which means it is always on the back of a survivor's mind.
*The treatment of these "benign" tumors is the same as for malignant tumors--craniotomy, spinal surgery, radiation or chemotherapy.
*There is very little funding for research, emotional support and financial assistance for the victims because of the benign classification. Anyone can donate to meningioma research on-line.
The Brain Science Foundation / The Meningioma Project
Meningioma Mommas
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