I think a thorough update is due... and of course I have a LOT to be doing right now other than this, lots of stuff to do at work, lots of stuff to do to prep for our wedding which is in 12 days.... but I'm in the groove right now, so whatever, things will get done when they get done.
Charlie's recovery was harder on him than the first one for several reasons. First of all, his spirit was broken some. The first time we were told the tumor was mostly gone and there wasn't much concern and he was hopeful that he wouldn't have to worry about it again. Secondly, the procedure was more invasive, he had more pain and more healing to do.
For me... the time between finding out the tumor was back to after his surgery was pretty bad. After surgery I was happy to take care of him and just so thankful that he had made it through OK and that Dr. Al-Mefty had been able to remove all of the tumor. It was also hard on me because Charles had less of a upbeat attitude than before. He was scared and so was I. But we didn't really talk about it to each other. I think we just both wanted to be strong for one another, but we knew. Well no, I take that back, HE knew that I was a total MESS. I didn't tell him EVERYTHING that I was freaking out about, but enough... and I knew he was more scared than he wanted to let on. But, he made it through. I am so thankful that he made it through.
Charlie was out of work for 2 months after the surgery, which of course was hard on us financially, but I try not to let that stress me out too much, you do what you can do, why worry about what you can't change? He went back working 3 days a week, and has been increasing since. He's pretty much back to normal working 4-5 days per week depending on what's going on. The last couple weeks he's been working a bit less but that's because he's needed to take time off for wedding stuff, his bachelor party weekend and he took the weekend off for his 29th Birthday!
A couple weeks after the surgery, we went back to Brigham & Womens to meet with Dr. Prasad, the neuro-opthalmologist. They repeated the tests that they had done prior to surgery and already could see a drastic improvement in his sight! This was BIG BIG BIG NEWS!!!! Originally, we discovered that his color perception had been hindered some as he had difficulty with some of the color blindness tests, after surgery he was able to comprehend them much quicker. He also did a test where there would be a light shone on a screen, and he had to click a button when he could see it. Originally, there were many times that he did not see the light with his right eye. After taking that test again, he knew he had done at least a little better. But then we got the results and it was amazing... they showed the results in a circle being his field of vision, black was where he could not see. Before the surgery, there was only a small section of white. After the surgery, there was a small section of black! Amazing!!! He had guessed that his sight had gotten better, but he wasn't sure how much. Dr. Prasad was SHOCKED that the surgery had caused such an improvement in his eyesight. When we had originally met with Dr. Prasad & Dr. Samuels they both recommended not doing the surgery right away because without any proof that it was making his sight worth, they didn't see any reason it had to be done right away. Of course, we knew the sight had gotten worse somewhat but weren't sure how much, and we knew the tumor was going to keep growing and the longer it was able to grow the more problems it would cause and the higher the liklihood that it wouldn't all be able to removed. In addition there was a risk that waiting would allow it to travel to the left optic nerve which we had no proof of it residing there (I don't think?). Dr. Prasad and Dr. Samuels had to humbly say that Charles had made the right decision! Dr. Prasad said that Charles made his week with such wonderful news :)
That was a great lift to our spirits!
One of the worst things for him about the beginning of his recovery was the tight head wrap that they made him keep on.. he REALLY wanted it off! So he was super excited when he got to have it taken off and get his stitches removed. We did see then that he had a big bump in the area above his ear and was told that they had inserted fat there and also in where the tumor had been, to take up space. Dr. Al-Mefty said that hopefully it would mellow out... well it's still pretty funky looking, but Charles doesn't mind so much, it's a small price to pay!
Things were pretty uneventful after he was recovered. He was so thankful to go off the steroids again! We were able to have a nice holiday season with our loved ones, even hosting a small Christmas eve dinner with my parents.
He has had to deal with fatigue. He gets frustrated often because he will want to do a bunch of things, and if you know Charlie you know he likes to get stuff done!, and he's only able to get through some and he's exhausted and has to rest. It has gotten a little better, but it is still something that he is struggling with. Rather than being able to go all day, a bit of an outing to run errands can end up making the rest of the day unproductive because he did too much and can't take doing any more.
He had a 6 month follow-up MRI done, and then it was another 3 weeks before we were able to get in to see Dr. Al-Mefty for the results. He kept having to schedule surgeries and rescheduling the appointment. When we finally did see him, he walked in and said "Looks good, go home!" There is no sign on the MRI of any tumor remaining. So we're going to keep hoping that nothing comes back! The surgery was pretty invasive so here's hoping there weren't any tumor cells left behind that will decide to get naughty! I think we were going to go back in 9 months for another MRI? I'm not completely sure...
Of course, after we met with Dr. Al-Mefty, I decided that Charles should see a neurologist about the seizures. Dr. Al-Mefty didn't seem too knowledgeable about the situation and I thought someone else would be more capable of deciding what Charles should do about his Keppra. There was a LOT of confusion over the next couple weeks with appointments getting made and re-scheduled and cancelled and one person not informing another... we thought he was going to do an EEG and then meet with the seizure doc in the same day, then the EEG first and then the doc... and we ended up seeing the doc first, she confirmed that the EEG should be done, we had to go BACK for that, and then there were WEEKS of phone tag before Charles was able to get the results and get a new prescription. The EEG came back fine, and wrote a new Rx for a lower dosage of his Keppra. However, he won't be stopping it anytime soon.
Basically, she said that there's no real way to know how much the Keppra is helping. He is not having seizures right now. That could be because the tumor is gone, or it could be because the Keppra is working. Since the EEG came back clean, she does believe that the tumor was the cause of the seizures and so the odds of him having a seizure is much lower now that the tumor is gone. However, having had a seizure before, he is more susceptible to having one again. So, I guess his brains are a bit more sensitive now.
In order to stop the Keppra, he would have to do it at a time when he would be able to not drive for some length of time (I don't remember how long she said.) So clearly that's not ideal. So we discussed it and we figured that 1) We're getting married in June, so not before then 2) Honeymoon to Disney World in October, so not before then. Then we get back from Disney and there's Thanksgiving and Christmas... I don't want to have to drive! So not before then... so the earliest time in consideration to go off the Keppra would be 2013. which is OK. Charles wants to go off the Keppra because it does have some side effects, such as fatigue, depression, anxiety, and stuffy nose. The Doc did say that there was no reason he needed to go off of it and if he had no problem with it he could take it forever and it would be of no harm to him, but he does want to go off of it, not just because of side effects but also because he'd like to not have to take meds for the rest of his life!
So that's the gist of it. Right now we are looking forward to our wedding and enjoying being able to spend time with friends and family. Charles is always extremely excited when he gets to see Braden who he absolutely ADORES. (Though how could you not, he's an awesome kid!) We're looking forward to a great summer and are so thankful that Charles has made it through this ordeal so far without any serious deficits. His sight is still hindered somewhat, his peripheral vision in his right eye is hindered, but his sight overall has improved and he has not had any degradation to the left eye because he was able to get the tumor removed soon enough.
It's tough, living life day by day dealing with work, chores, wedding stuff, and finding time for fun to REALLY think about how grateful you are for every day that you have. I need to try to stop and be thankful for that a little more often I think. I do try to sometimes. Every day that I have with Charles is a blessing. He is absolutely the most amazing person I know. He is so ridiculously loving and caring. And he's got the best sense of humor. No matter how bad of a mood I'm in, he can always make me smile.
I ended up here today, because I remembered that someone had told me that Sheryl Crow had announced that she had a meningioma, so I finally remembered to go online and read about what was said. And of course when I read the articles that had inaccurate information, or downplayed the seriousness of the disease, I got really annoyed. And I, being me, wanted to research and show people the truth and prove them wrong.. and it just makes me want to shake people and say STOP BEING STUPID, and show them what people REALLY have to go through when they have a meningioma. Charles has been through a lot, and it definitely hasn't been the best case scenario, but at the same time, he has been incredibly lucky. And I'm holding out hope that things keep looking up for us!
Reading about meningiomas made me want to go back to the message board that I'd been frequenting, mostly before Charles' first surgery. I wanted to see what there was for new information, news, research that maybe I'd missed out on not following it anymore. And I quickly came across some very upsetting and startling news. I feel shell shocked.... There's a woman on the boards who has a son who is a few years younger than Charlie, who had a tumor in a similar location. Her son too, had surgery to remove the tumor, only his was completely gone though they did fear that residual cells may have been left behind. Unfortunately, his tumor grew back as well. They were told that he could watch and wait for a while. Quickly, his eye sight started to be affected by the tumor, so they decided to have surgery again. I don't know the details, I wish I did... but I looked around and there is nothing... there is only his name on the "In Memoriam" post, and this comment from his mother,
There are so many other factors that come into play. Big one. Location location location. That being said my son's was "atypical" but barely met the criteria...mitotic rate 5% and thats it. And it wasnt the tumor per se that K*lled him. It was the location...sagital sinus (spelling) optic nerve carotid artery blah blah and blah...in retrospect the effing bastards should have radiated him...instead of attempting a second surgery..... so what if he was blinded in one eye like they were so afraid of...at least he would have been alive. s0rry for the debbie downer...I prob shouldnt even post anymore, but just wanted to say its NOT the grade...not ALL atypicals come back....but consider other factors as well...I wish I would have....
Shell shocked.
I can only assume that something happened during surgery and it involved the carotid artery? But it could have been something else, I don't know, but I'm just shocked and so so so sad for her and for him. That surgery was about a month after Charlie's second surgery. Her son had had other health problems, and I was thinking, hoping that maybe his death had to do with something else entirely, but based on her comment it sounds like it had to do with that surgery. I just feel sick thinking about it. I was so scared that something would happen to Charles because of that surgery. I am just so thankful that he is Ok. Sitting here, reading that, as I'm about to be married to the man of my dreams... it's insane. It's also been over a year since Jeremy has been gone. It's crazy.
I was thinking to myself earlier... people always say live life as if every day is your last... how about live life as if every day is HIS last? That's more motivating to me at least! Don't take your time with the people you love for granted. It's the most precious thing in the world.
This made me cry. I am so proud of you both. love mommy
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