A Regretful Update

It has been lovely not having anything to update this blog with in the past 15 months...

Things have been fantastic for us since Charles has recovered from his surgery. His recovery was swift and he has been much healthier. He has even lost 56 pounds since his surgery! AWESOME!!! In addition, we have had a lovely year plus living together(now in a nicer apartment!), and we even got engaged in September! Woohoo! :) The wedding is planned for next June (2012).

We haven't been thinking too much about his tumor, but it has always been in the back of our minds. The tumor/surgery did have an effect on his sight in his right eye which is permanent. He cannot see far to the right, so basically he has no peripheral vision on the right. He has been accommodating for it when he drives etc. to make sure he has been safe. It is a nuisance, but overall, not bad if it's the only lasting effect from the ordeal. He has been on his Keppra since his initial seizure in 2008, and has not had any seizures since the one before the surgery.

Charlie was supposed to have his annual MRI in January, but when they called to confirm the appointment, he was informed that his health insurance no longer worked with that hospital, so we had to postpone the MRI. It took a couple months for him to get his health insurance changed so that he could still go to Brigham & Womens. Once that was done, his MRI and appointment were scheduled for May 14th and 20th.

On the 20th we met with Dr. Golby, who has taken over Charles' case since Dr. Black's retirement. She was very to the point and informative. She was curious if there had been any cause that we knew of as for why as a young healthy male he would have gotten a meningioma, but we have no idea.. She did a test to see how bad Charlie's vision is impaired and discussed his Keppra dosage.

And then she told us the news.. the tumor has begun growing back.

Thankfully, it is still very small, she showed that it was about the size of the tip of her pinkie finger. So the sooner it is treated the better.

We wondered if it would have been better to have the MRI done 4 months ago, but it's also possible that 4 months ago it would have been too small to show on the MRI and we wouldn't know about it at all for another year, so I think that we are lucky to have found it now so that it can be taken care of. We were told when they got the results from the pathology that the cells were somewhat rapidly reproducing, so unfortunately there was a higher risk of recurrence, especially since it had not been completely resected. We remained positive in hopes that Kirby would not attempt a comeback.

Dr. Golby said the options are surgery or radiation. Her recommendation is radiation but we should look into whatever we want whether it be one or both. She said that as far as surgery goes, she would send is to the BEST neurosurgeon for skull base tumors in the WORLD. He probably would be optimistic about the results of surgery, however, while he would probably not tell us, he would not be able to get all of the tumor. The risk of surgery is of course all the risks of brain surgery- infection, fluid leakage, the increase in scar tissue given it would be the second surgery, and the likelihood that Charles would lose all sight in his right eye. She said that since he would not be able to get all of the tumor out with the surgery, likely Charles would then still need radiation.

The risks with radiation increase with the size of the area needing to be treated. So if Charles' tumor was large, maybe surgery would be a better option and then radiology later. However, since it is still very small, the radiation shouldn't be that much, and it's better to get it done ASAP. It seemed to both of us that from the information she gave, that it would make sense to go ahead and try the radiation. However, she would not tell us more about the radiation and couldn't answer any questions, she told us to discuss it with the radiologist. Since the appointment was Friday afternoon and we finally got in to see her 2 hours after the scheduled appointment, they were unable to set up appointments for him (she had been called into the OR, so I hope that person is doing OK because they were obviously the priority!). We expect to hear back from them early this week. They are going to set up appointments with the radiologist and the neuro-ophthalmologist for the same day. Thankfully Charles still brought up the idea of going to see the neuro-ophthalmologist, Dr. Golby said it was a good idea in order to get a base-line of how his eye is before treatment.

I plan to do plenty of research myself. I plan to reach out again to the wonderful people at Meningioma Mommas who were very supportive the first time around and I still feel bad about not updating and putting the word out there that surgery can go well and recovery can be (relatively) easy. I know I had read on there at one point that it was a good idea to have a cognitive test done to be able to measure any sort of cognitive impairment that can occur when a tumor is in the frontal lobe. I don't remember if this related to surgery, radiation, or both, but I will keep it in mind.

Charlie is doing ok. He just keeps saying that he is not worried and he never has been. He is just taking everything in stride as it comes, and staying positive, which is what helped him through this journey thus far. I will try to stay positive and supportive, but I can't help but show how upset I am. I started crying during the appointment and was unable to talk about it for a while because I knew I would just break down... I haven't really had a good break down about it yet, so I imagine it is due to come soon... haha. But, that's OK. I don't know at all the time frame for this, but I hope it will not interfere with the wedding and that he will be back to good health for then. He deserves that.

I will continue to update this blog with information as we receive it. We welcome any messages. Please keep Charlie in your mind and wish the best for him.

A recent picture of Charlie with his nephew :)

As always, you can support Charlie and people like him by donating to help fund research into meningiomas, the most prevalent and yet underfunded type of primary brain tumor.

Learn more, get support, and make a donation. - Meningioma Mommas


In addition, I just wanted to note my condolences to the Reichman family and that my thoughts are with them. Jeremy was a co-worker of mine who recommended Dr. Black to us. He had been diagnosed with brain cancer (not a meningioma) about 6 months after Charles was diagnosed. He championed through chemo, radiation, medications, clinical trials and surgery and had been doing well. Unfortunately the tumor quickly grew back and began pressing on his brain stem, and there was nothing left for them to do. He passed away on April 6th. He was upbeat and optimistic throughout and beat the odds that were against him and was able to have a couple extra years with his children and family. I'm sure that I will continue to think of him often, and am humbled by his memory.

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.