Showing posts with label recovery. Show all posts
Showing posts with label recovery. Show all posts

Tuesday, December 1, 2009

Happy Holidays!

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.

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.

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.

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! :)

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!

Tuesday, September 29, 2009

Happy 1 week post-op to Charles!! :-D
I love YOU!
~Sue W.
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

Sorry it's been so long since I've updated! Just been doing lots of resting!!! Charles is still doing well :) I'm going to try to post a lengthy update tomorrow. Feel free to nag me!

Thanks so much to everyone for being there for us!

~Sue W.

Thursday, September 24, 2009

He's still ok.tired and sore. lots of sleep for us both today. michele and patty both stopped by for a couple it was nice.

Wednesday, September 23, 2009

He's doing well, some mild pain, taking the drugs, and he's tired. hopefully sleep for the night soon. yay for not being woken every 4hrs for vitals!
been home w charlie since 1:00 doing ok. napped some. showered. he's napping again im tired too. doing well though! :) pain was ok then ate now more sore.
CHARLIE GETS TO GO HOME TODAY!!!!!!! he's doing excellent! WOOOHOOOOO!
The physical therapist who looks like Jimmy just took him for a walk. he's going to take him up and down the stairs a bit. good stuff!
Back with charlie again. he's sleepy doing well pain isnt too bad. they removed the dressings he's got some sexy stitches going on. lots of healing to do!

Tuesday, September 22, 2009

Charlie is in his new room. his roommate seems nice, very chatty though! good luck to him :) haha. i told him to pretend to be asleep! new nurse seems nice.
All packed up & ready 4 when he can move to the new room. he got an ice pack for his head/jaw and he's fast asleep. tho i have to wake him at 8 for a tv show!
Shall be moving out of the ICU later tonight since they finally got a free bed. dr black is pleased with how he is doing and the goal will be home thursday!
He walked to the door and back now sitting up in a chair having some food finally! yaaaaay!
Ordered charles a nice meal off the room service menu! neat! now he's with the physical therapist guy making sure his parts all still work!
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!!