Throughout the past year, after that thing was removed from my head, I’ve had memories trickling back to me. Thankfully, my nice brain saved these great memories somewhere! I guess they were blocked by the 20 to 30 year old tumor for quite some time. Now, it is making me realize so much. The biggest “a-ha” is that as the tumor grew in its location, I had to focus only on people and things right in front of me to survive. Unfortunately, I somehow managed to cut myself off from a lot of people. I’m so sorry!! I get sad thinking about it. I did not mean to create any divides or come across that way to anyone. But I know all my true friends are willing to understand what is and was going on in my head. It will take time, but I am reaching out to people to re-connect. I get scared and nervous, but, more importantly, I am excited to reconnect with so many great people!
Update: It’s been 3 months since the operation and today had a visit with my excellent surgeon, Dr. Arnold Etame, this morning at Moffitt. Brain is doing much better now – a huge portion of the brain tumor (as seen in an updated MRI) was removed and the brain stem has now moved back to normal. Healing more quickly every day!
I’m proud to announce this is the first time eating out for a long time – I sure haven’t been able to leave the house long enough to place order, wait, and eat. Yes, the prescriptions make me still nap a lot. This sushi restaurant is one of our favorite spots. And it’s called Mike’s! Perfect! Yes, I did have some points at the restaurant with some weird feelings of being out of it and nervous, then tired, then fine. We made it through, and it was delicious! Very worth it to challenge myself and to heal.
Here we are:
Update: Been feeling better overall now! Still taking a prescription that makes me tired, but it means that it helps the healing in my head. Some days feel great, but some days I still have points in pain as they heal. I am not allowed to drive due to the prescription, so a lot of home activity! I can’t stop saying thank you to everyone for the wonderful messages you send!! PS – the photo above is from a great site that is perfect & funny to understand what this recovery time is all about!! Check out a woman’s advice here, “20 Things You Can Expect After Brain Surgery”.
[PPS – I told you that it is an oligodendroglioma that was/small bit left in my head. I would say not to “google” the word, since lots of info comes up and the scary seems to be first. Please let me know if you have any questions.]
Gosh, so nervous today. I do mainly think it’s from the anti-seizure prescription as well. Before the operation, they had given me this as well in a much lower milligrams, but it really made my nerves ultra high before. Then, I was nervous about having an operation. Now it’s the healing – some things not compete. Some days feel almost normal, some not really. Most of the issues are in the morning. Then by the afternoon feel almost normal nowadays. So yesterday I spent almost 1.5 hours outside working on chopping things that have overgrown in the backyard. Then in the evening, got really tired and this AM felt really tired and asleep. I did get up at normal time and do a walk outside. And then went to sleep for about a ½ hour. By 1130 am had lunch ready…and once eaten, I am now feeling better. But all morning I was nervous, especially after taking prescription in morning. I need to figure out how to not let it overtake me.
Wow… I thought I didn’t write a lot in August… September was even worse! I guess I don’t need to make up reasoning. That being said, I am finally just about normal in the afternoon now. The mornings are still rough with something hurting and me still being sleepy. The biggest issue is the prescription that helps to keep me from having any seizures – I take the maximum allowed at 730am and again at 730pm. It is really supposed to keep you in a trace/slow feeling, so you are healing. But it is very strong.
Yesterday was a good day overall. Got stuff done out back, cleaning in bedroom… Had a great Thai dinner and watched the sunset at Crystal Beach. Until last night going to bed when I realized it was Saturday and the operation is in a couple of days. I just got, well, scared. That is what is really scary to me. I admit it. I had some trouble getting to sleep. I just can’t let this fear take over these two days before the actual operation. Fuck, yes, it’s scary. Fuck yes, it’s scary!! But I don’t want to hide in myself and just be scared. I’ve been strong and I can continue. I will do my silly tasks around the house, like laying mulch and trimming the bushes out front and dividing the coleus. What I am realizing is that all these silly tasks really do mean a lot. The silly tasks Mike and my Mom and I have done over the past couple of weeks has made our house feel like a home again. We are moving clutter items into a staging area or just donating. It feels more open, more positive. A place to heal. And I realize that I have been treating myself and my husband improperly much more deeply than I thought by not “ignoring” my fear, but succumbing to it. Anxiety is dangerous. But that’s also why I see this as the negativity and anxiety I’ve held onto for so very long being literally taken out of my head. I don’t want it anymore. It holds me back way too much. Again, that’s why I am looking at this with THANKS. The crap is literally being pulled out of my head. YEEESSSSS!! And I think it will never come back. I’ve been chatting with Mike about this for a while and he probably thinks I’m crazy. But I think now that we have been literally clearing out our home, he sees it as well. Our bedroom felt so open and lovely yesterday afternoon – no dust, no darkness – just taking down the blinds was amazing. I want to use this openness and positivity to help others. I’ve had these thoughts for a while as well, just wasn’t sure how/where to focus them. Still not 100% sure, but a website will be a start. Mike is encouraging me to write a bio – it is amazing how many people have brain tumors and not much is discussed. Maybe that’s a good thing? Survival rates? At any rate, despite my immense fear, I am focusing on focusing on the positive. It’s the little things that add up each day. No, I haven’t learned how to let go of everything, but I’ve learned to let go of a lot more. And when one opens up, one can allow the light to come in. I want to help other people to see that as well.
The outpouring of love from so many people around – friends, family, friends of friends. It’s truly awesome. We really don’t understand the power we have. And all the negativity from the superfast internet revolution has actually pushed the power down. I feel it now. It was there all along and I was ignoring it. It makes me mad at myself and sad for myself. But then glad for myself. So glad I see it now. I don’t know what is going to happen with all this. But I believe I will heal pretty fucking close to 100% and I want to use this to produce more good in the world. I’ve got to stop closing myself off from so much goodness and so many good people. No, people aren’t perfect, but everyone tries!