Thursday, February 25, 2010

Kindness of Strangers

I had my MRI and appointment with my Neuro Surgeon yesterday. That went as well as it can when you are placed in something resembling a coffin all the while knowing they are looking at TUMORS in your brain.

Ya. So the valium helped.

I laid there in that thing and the entire time it was buzzing and clicking away I was repeating to myself over and over, "the tumors will be smaller or gone, the tumors will be smaller or gone." Over and over again for the entire 38 minutes I was in there.

I got out, got dressed and they handed me my films. I pulled the first one out and looked at it. And the largest tumor was immediately visible. Not smaller. Still there. I burst into tears.

Then we walked over to see my Neuro Surgeon. His nurse, Mike, came in first and did a lot of preliminary things with the images and then spent some time talking to me about how I was feeling.

Here are the Good Things from yesterday

The tumors showed little to no growth. That is awesome. My brain still seems 'happy' with the tumors right where they are - in other words - the tumors are not causing the brain any problems. At least not yet. Doc said again, he will take them out if I want him too but he doesn't see a reason to go in if we don't have to yet. I totally agree. People keep asking me - why don't you just have them taken out. Well, a few reasons. It is brain surgery. Things can go wrong. And anesthesia. Things can go wrong. Also, they can't get them both with one surgery. It would have to be 2 separate surgeries; 2 separate ICU stays; 2 separate recoveries. There are lots of different complications with these surgeries, anti-seizure drugs, double vision during recovery, the inability to walk and speak sometimes, not to mention the blinding head pain - lots of things. Yes, the tumors would be out but I would be recovering a long time. And I have 3 kids - 2 of them very small. I can't even begin to imagine how I would do it and take care of them at the same time. Also I would still need the MRI's every 6 months to make sure the damn things hadn't come back - because Meningiomas tend to reoccur. So again - why DO all of this until I have to DO all of this?

The So/So news

We talked about the continued facial weakness. I asked about the Bell's palsy treatment facility there and he said yes, they had one, but in truth, they wouldn't be able to help me. He explained that they rate facial nerve paralysis on a scale from 1 to 6 - with 6 being total paralysis and 1 being totally functional. He said right now I'm at about a 2. At the BP treatment facility - their goal is to get their patients to a 3. So I've already naturally healed past the point they would even hope to get me. He said the most they could do would be to put some botox injections into my right cheek to soften the hypertonicity on that side.

He looked me dead in the eyes and said, "I know you don't want to hear this, but you will probably always have an asymmetrical face. There really isn't anything else we can do to improve where it is today." Ok. So I have to just accept what it is now. But it is still really hard. You know there are women, lots of women, out there who are my age and older - who have perfectly symmetrical faces who have NEVER accepted how they look. If they had there would be no plastic surgery industry. I've only had this for 8 months. It may take me a while to totally come to a place of acceptance. I still hate it. I still want my old face back. But in spite of everything, I still have some hope that maybe it will continue to heal, if only just a bit more.

The not-so great news

He said, "My dear, medically you never want to be an unusual case. But you ARE an unusual case." *sigh* I responded that I had always been an over-achiever. He cracked smooth up. And then he talked about the tumor on the eye. Well, it is on my right optic nerve sheath to be exact. These are EXTREMELY rare. And because they are so rare there is not much data on them. There isn't that much information out there on how to treat them. And there isn't that much data out there on what treatments work better than others.

This is what they do know. If it continues to grow - it will take the vision in my right eye. He said it could take as long as 15 years for that to happen. Or it could be 5 years. OR it could just take my color vision in that eye and that is all. I will tell you that I am already color blind in my right eye. I wasn't 3 years ago but I am now. Contrast in colors are hard for me now. OR it could stop growing altogether and leave my vision as it is now.

Because this tumor is wrapped around the optic nerve it is inoperable. Also radiation is pretty much out of the question. Now, he said that if we did radiation it could improve my vision for awhile - maybe 5 years. BUT radiation of this type, at this intensity, and in this area tends to cause FURTHER tumors later on. He said if you were standing here and you were in your late 50's or 60's - I would say that radiation would be ok because those further tumors don't tend to show up for 15 - 20 years. BUT you are 37. I don't want you to have further tumors in 15 - 20 years. That is just too young. He went on to tell me that he could refer me to see some radiation specialists and they would probably recommend radiation for that eye. But he also told me to remember they are basically selling a very new technology. They don't even know what all the ramifications would be yet. He said again, in his experience, he didn't know if it would be worth the risk of the future possible problems.

Then he told me the rest of it. With no treatment I probably have 15 years or so before I go blind in my right eye. He also said though that it might not be that long or it could be longer - depends on how fast the tumor grows. These tumors can grow large enough that they can cause the eye to actually bulge out of the socket causing further facial deformity. He said if that happens - they would go in and surgically remove the tumor and the optic nerve hopefully returning the eye back to its normal appearance on the face. He said that the surgery is very tricky and difficult and that of course, I would be blind in that eye when I woke up.

It is a lot to hear. And a lot to process. In 15 years Max will be graduating high school, Pip will be in high school, and Alec will hopefully be graduated from college and starting his life. These are all things I want to see. Without having an ugly bulging eye or being blind in one eye. I wish it were all different.

For someone who is as much of a control freak as I am this is incredibly hard because there is nothing I can do about any of it.

Never under-estimate the power of Kindness

This morning at 8:10am I got a phone call from Mike - my NS's nurse. He came in and visited with us the last time we were there back in September. He remembered us when we got there yesterday. Anyway - my doctor is referring me to a NeuroOpthamologist for my eye. He said he was brilliant and they were going to call in some favors to get me in to see him. He also said he was going to go ahead and set up some appointments for the Bell's too - couldn't hurt to try. Mike called me FIRST thing this morning to tell me he had already got the referrals going. He gave me the names of the 3 different people they want me to see and asked me to call him as soon as I got the first phone call from one of the referral docs. He said he was going to take it from there and make sure that all the appointments were scheduled on the same day, or on two consecutive days, so that I could do it all in 1 trip. How awesome is that?

And then he sat on the phone and asked how I was doing with all of it. He told me about his conversation he had had with my doc this morning and then he let me talk. About all of it. He told me I wasn't crazy and that I was handling it all remarkably well. He told me that I was still very pretty. He said he knew that the Bell's was awful for me but that frankly I was pretty "genetically gifted" to have Bell's and an asymmetrical face and still be beautiful. He told me again that they were going to do everything they could to help me. He didn't have to do that. I know he was busy and had other things to do but taking time and listening was a very kind thing to do. And it made me feel like they care about me and my well being.

They are wonderful - all of them. The nurses and my Neuro Surgeon - they don't talk AT you - they talk to you and with you.  Yesterday my doctor let me cry after he told me everything - told me it was normal to feel like I do, validating my feelings, and said - flat out that it sucks. And it isn't fair. But said that I was handling it all amazingly well. And he gave me a big hug as we left. I don't think you could ask for anything better in a physician and his staff. It is sad to me that this is a rare find in a physician these days but I am so blessed that I was directed straight to this office. So now we wait. And pray. And continue to hope.


  1. Thanks for the update Kath. I'm so excited to hear that the tumors haven't grown!!!! That's awesome news!

  2. Wowsers.

    I'm glad you have kind people around you.

    And it is so far from fair it's' ridiculous. I'm glad you were validated. that is a really important thing I have found.


  3. Wow Kath! What a day. I totally understand now why you don't operate. I'm so sorry I was dopey and asked the question. As for your face, you ARE gorgeous. And nerves regenerate about a millimeter a day. So over time you might find it does slowly get better. *hugs*