Clinging to hope

Old school One of the things I didn’t realize when I wanted to write was that I wasn’t always going to be able to write. Having your brain melt as you watch is sort of a horrifying thing. But it’s something that I just need to deal with. I’m better in the morning, I’m better on paper and it’s the computer that is hard in the afternoon and impossible in the evening. So I’m waking up crazy early (like 3 am) these days. I might as well get on the computer then, while I can.

I’m a bit of a sad weepy mess today. The wonderful people who are taking Angel and the birds are arriving in Missouri today, and I sure hope it all just works out well for them. I’m sorry I can’t be there to help. I’m sorry I can’t be there to say goodbye but it’s one of those weird things because if I was there, I wouldn’t be saying goodbye, right? I hope they can manage some photos. I hope the camper moves easily. I know I found them the right home, I just hope getting them there works out so they can all start the next chapter of their lives peacefully. I miss them all so much. Those are going to be the most well traveled birds ever, and I hope they get to relax and settle in Virginia and live happily ever after. They’ll have Angel to look after them, and Angel will have a young puppy to keep him company and it’s all going to be FINE.

Off to Oahu My brain tumor news is of course complex because nothing is easy with a damn tumor. The Friday neurologist I’ve decided is a complete whack job. The new surgeon I met on Monday was horrified at the medicine regime he had me on, and thinks many of the debilitating symptoms are from the meds, so I’ve stopped the diuretic cold turkey and cut the seizure meds in half.

I’m shaky and wobbly as all get out, but hoping that will pass quickly as this stuff gets out of my system. I’ve now lost 17 pounds since arriving here in Hawaii, and as much as that feeds right into all of my body image stuff, I need to stop that now and get the queasiness under control. It’s not that I haven’t been trying, honestly. Everything makes me gag, and having the dry heaves with a headache is exactly as much fun as that sounds.

The flight to Oahu to meet the surgeon on Monday was as horrible as I’d feared — take off and landing are just brutal on my head. I made it through it with meditation and slow breathing, but I’m getting pretty experienced at calibrating my pain number, and got to 7 on the way there, 8 on the way back. I thought Lili was crazy to order a wheelchair, and instead I was grateful that it was there.

Brain tumor Upshot from the surgeon is that he thinks he can remove about 90% of the tumor with surgery and gamma knife the rest. He is less convinced it will relieve my symptoms, but can’t see anything in my head that could be causing the symptoms. It’s pretty common for tumors in this region to be considered asymptomatic. I’ve sat in so many medical offices with the scan up on the huge monitor and had a dude in a white coat sit in front of the scan with the huge tumor in the middle of my head say “yeah, I just don’t see anything that can be causing a headache or a seizure. Huh.” Really? That honking big white thing right there in the middle can’t be the reason I arrived in the ER unconscious? And it keeps happening?

But to be honest, it doesn’t really matter if he can take it out, right? Right. And I have several surgeons on the mainland now who do think removing it will get rid of my symptoms, and to be honest, that’s good enough for me. I can’t live with this thing in my head with this much pain. I’m on day 4 of a horrible headache and I’m just DONE.

There’s a little bit of a horrifying theory that what I’m experiencing is a result of the traumatic brain injury I suffered when that damn tree fell on me, and that those symptoms could still be there even after the tumor is gone. But it makes more sense for me to first take the tumor out, hope that works, and then deal with the rest after if I still have symptoms.

I’m not taking having a craniotomy lightly. I’m allergic to all narcotics, so this isn’t going to be a walk in the park. I dealt with that broken back and everything without opiods, surely I can do this. What I can’t do is live in constant pain without relief, which is what I’m doing now. I’m pretty sure my kids and husband are on board, though we’d all prefer one of the mainland guys who operates in this region routinely, and for some reason, I’d like him to believe it will relieve my symptoms, but I guess that really doesn’t really matter. The insurance will approve this surgeon because it’s in the state, he’s one of the top guys, can I please have the earliest date possible?

13 thoughts on “Clinging to hope

  1. My Dear Lisa, I am breathing hope and pleading for strength and willing speed for your surgery to take place….. other than that … I hold you in my heart with my arms wrapped around you keeping you warm… Bless you from me and Freakin Frank and Belle from Kansas….

  2. Lisa, my very best wishes and positive thoughts. I’m hoping this will soon be behind you and you can get back to doing what you do.

  3. Lisa,
    Have you thought about cannabis oil? RSO as well. There are a few fb groups. I will gather some links and things for you. ♡♡

    • Yes, she has. She’s been using cannabis every which way, with varying success. She’s had this headache since the flight to Oahu on Monday, and nothing has shaken it.

  4. Lisa

    I don’t really know what to say except my heart goes out to you!

    I hope with all my heart that you get a surgery date sooner than later

    Sending you soft gentle hugs

  5. I ache for you, Lisa. It must be so hard and scary, especially without Frank and your beloved pack. I pray that the surgery relieves you of all this sucky suffering. ❤️❤️❤️

  6. Hang in there! You’re a tough woman and you’ve gutted it out more than once in the past. I hope the surgery is successful.

  7. hang in there Lisa, my nephew had a similar situation with a tumor and they could not remove all of his but most of it was removed and he lived for 20 years after the surgery. He did have some symptoms after his surgery but not bad, couldn’t climb up a tall ladder, heights bothered him but it really didn’t impact his life. You are in my thoughts and prayers all the time. hugs to you, stay strong

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