I had brain surgery - AGAIN - update post #22 - Page 2

[Ms. B. Sprout]

Big hugs to you.

[Starflower]

UPDATE: The scans showed that the lesion had regrown where it was removed and also it grew further into my eye area, affecting my vision. July 21st, I had a second surgery to completely remove it. There is some hope of identifying it this time since they found some cells which looked different than last time. It has presented in multiple ways and completely baffled the medical community so far.

I am about 2-1/2 weeks out from the second surgery. My vision is improved since before the surgery. I have a follow-up with my doctor this Thursday (unless she goes into labor). I do not have any expectations as I have become fairly comfortable with ambiguity.

I am still unable to drive and am very tired. My DD is dealing with things more in "real time" this go around instead of stuffing all of her feelings and waiting for them to pop. She told me a couple nights ago she is scared that I might not be around. While it was sad and scary to hear this, I was proud of her that she was able to express this fear as directly as she did. I have the same fears. DD has also been dealing with my incision better this time. Last time, it scared her to look at me for a long time. This time, she's been pretty cool about it.

My mom came out again this time, but left after two weeks. I am trying to lean more on my local community this time, partly because I want to show Mom that while I am happy she came to help and I appreciate her help, I do not wish to be rescued.

I had a conversation about how I felt about how she and my dad deal with my brother. I have never seen such a co-dependent group of people. My dad came out for a weekend to pick her up. They also take two days to drive here so my brother was on his own for almost a week. Bro hardly called this time and seems to be doing well. (Normally he calls my mom 10-20 times a day and expects her to listen to him pontificate for 6 hours at a time, which she resentfully does.) I think they'd all do better to stop trying to keep him in a victim position and let him sort out his own life. When the three of them are together, it's just a sick combination of weirdness.

My dad looked awful, has extremely low energy and hasn't been able to do much for the past two years, which I suspect is partially due to depression and the stress of their living situation. The way my dad speaks of things often shows much anger toward my brother (not because of his disabilities but more because the way he treats my dad). They are all constantly struggling to control each other.

Yet, my parents continue to try to be responsible for my brother (he is 37). I think this undermines all of them. Yes, he needs help due to his disabilities and his mental instability, but I think it would be more appropriate for him to find it in other ways. But instead of helping as facilitators so he can become more independent, they are choosing to build on to their house since he can no longer go up and down the stairs and keep things in the status quo. This frustrates me because Mom always seem to think that once this one thing is done, everything will be OK. I think my dad has basically just given up. The truth is that they are all three waiting for him to die while trying to make him as comfortable as possible. This might be OK if my parents were not sacrificing their own lives 24/7 to do this. They refuse to ask for or seek outside help and then they complain about their situation. They also usually refuse to leave bro alone even for a few hours because of what he might do, then they complain about him causing all these woes. And none of them are happy, not even my brother.

I told Mom that as long as my bro was living with them, we would not stay with them because I do not feel safe around him and I would not let DD stay with them either. She didn't like it but she kind of seemed to understand. I promised not to bring up their choices again but at least she listened to me. It is their business and DH and I have chosen our boundaries.

So now I am just trying to slowly get back to regular life at home post-surgery. I'm planning a low-key day with DD today. Friends are coming over tomorrow, then my doc appt is Thursday. Wish me luck.

[midnightwriter]

 You are such an incredibly strong person. You inspire me. Sending you healing thoughts. Please keep updating.

[BeckyBird]

Starflower, how are you feeling? Thanks for posting the new update. You seem to be a strong woman, despite this situation. My mother has a pituitary tumor, and she refuses surgery. I don't know how you managed to go through TWO surgeries, but it must have taken incredible strength. And, even though your family has issues, at least they are there to help you. What a blessing!

Thanks for sharing with us, and please keep us updated if you can!

[Starflower]

Today was my one-month anniversary of my second surgery. I am doing relatively well, though I realized today that I have had a headache in some form or other for the past six months straight. Bleah. Today my pain was pretty good and we had some friends come over. They brought dinner and grilled it here so we could all eat together while the kids played and I mostly sat on my butt. It was weird doing this, but I still tire very easily and I get headaches anytime I overdo it.

Yesterday I didn't sleep well the night before and I had terrible headaches all day long.

My scar is looking OK. Only a couple of scabs left and they are very small. And today, I drove the car for the first time since the surgery. It was fine. I rather enjoyed it. The neurological symptoms such as feeling lop-sidedness or dizziness have all disappeared. Yay! Now it's mostly a matter of do I have enough energy to drive from A to B and do whatever activity is there and still be able to drive back? That and if my headaches are bad enough to need a larger dose of pain meds then I can't drive because of the side effects. So I am planning things as best I can predict my energy levels to be.

It was really nice being able to drive and be out somewhere that wasn't a hospital or doctor's office though. :-)

[kayleesmom]

sending hugs.