Decided to (finally) let everyone know about my tumor and the surgery on Facebook. And 240 likes and 258 comments! Thank you everyone for responding and supporting me!!
Here’s my post:
“Update – I had a big brain tumor!! It was a glioma – called an oligodendroglioma. I didn’t think I had something like this – thought it was me just being nervous. Well, went to the emergency room after having an attack at work, and they let me know I had a brain tumor. I then had an operation on my brain three weeks ago. A wonderful doctor gave me a big operation and took out a huge percentage of the tumor. I am healing now and starting to feel better. We will see the doctor soon and decide what the next decision will be. My husband, Mike, is a wonderful partner in soooo many ways and helping me sooo much!! My mom, Betty, is staying to assist here with us. I am sorry I didn’t tell everyone right away, but I appreciate all your thoughts! I am still sleepy sometimes and in a healing state, so I will get back with you!! I’ve received great cards, wonderful plants and flowers, and fun things. Thank you for your support!!”
(Yes, adding this afterward…) Day of my surgery. Here’s what the surgeons and hospital call it: Awake left temporal stereotactic craniotomy with tractography for resection of temporal insular glioma.
The operation ended up taking about 12 hours I’ve been told. I know it was hard for my husband and my mom to wait in a small room for all that time. I certainly remember arriving at Moffitt early in the morning – still dark! I was quickly hooked up to a lot of meds with needles. And it did relax me a lot! I was then sent into the operation room, not very far away. I remember some chatting between all the people operating throughout the surgery. I guess Dr. Etame asked me questions before continuing, but I don’t remember that. I remember hearing some music he played before commencing on the surgery. I also remember asking for pain meds a few times when the staples were being added to my skull. That did hurt a lot!
Next thing I know, I was sent to the “wake up” area, where a nurse stopped by frequently asking me questions. Once I was more fully awake, I was brought to my room. My husband and mother showed up not too long after that. They stayed for a half hour, and I was given some more drugs to sleep well that night.
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!
My mother is staying with us, so we went to a yummy Thai food dinner, then over to pretty Crystal Beach to watch the sunset. I always take a lot of photos, but I must say, this sunset came out as perfection!! I’m ready for my surgery in three days, even though I’m nervous.
It’s been just over two weeks since I was diagnosed as having a brain tumor. Wow. Now, I understand why I haven’t written anything in an overwhelming situation. Also, finally remembering that writing has helped me so much over the years. Yes, I have a brain tumor. I have to use this space as a mental clear out. So there will be diatribes, and I give myself permission. Normally, I would want something structured and organized. But no, this is all about me and I will let the diarrhea flow. I guess you can see I am still slightly in shock.
In a few days, they will saw through my skull and suck out as much tumor material as they can. We will then decide post op treatment for any remnants – radiation, chemo, chemo pills, etc. I am scared. But at the same time, I am so very lucky and fortunate. It truly could be so much worse…the list is endless! I am attempting to not focus on the fear, but it pops up. I really thought I was having acute anxiety attacks and might have to go into the mental hospital. I had them back at 9/11, then smaller points afterwards. But the therapists I had been to before had taught me some good tools. Even starting at a new job with some great people, the attacks were continuing. In a way it is good, because I did start to think about me – what was I doing to be happy, with myself, with my marriage, with my family, with my friends. I was starting to realize I had pushed so much away and built a big wall. And now they will be literally sucking the shit (and the wall?) out of my head. Take it away! I don’t want to hold on to things that don’t matter anymore. It took me 41 years, but that’s ok!
When I think about what I want to do in the future, I always say help people. It seems so simple, but we should be here for each other. And there is so much negativity all the time on TV, internet, etc, it gets me down. I have had many realizations this year – good ones. And this is the biggest – and I ask myself: Have I allowed this to grow in me? Maybe. But I’m letting the past and the detritus go. It has only been two weeks and I can feel the difference.