I really need to stay off google. There are so many stories of people with brain tumors who don’t survive them, even with surgery, chemo, radiation, etc. I tell myself that people who do survive aren’t the ones writing about it, but I’m not sure I believe that.
I’m so lucky, though. I’ve found a spot with so many people who are going out of their way to care for me. I’m driven around like a movie star, treated with kid gloves, and everyone is just so nice. I have no responsibilities, just things I can do that I enjoy doing, like taking Chandra for a walk, playing with the parrots, feeding the ducks. Being plucked out of my life (which to be honest, was pretty stressful, for many, many reason) and having time to just exist without those stresses, is such a luxury.
Frank, of course, has all of that life to deal with, without my help, so he is clearly taking the brunt of it all. I feel quite guilty about it, and try to help as I can. I really wish people who ask how they can help would actually help Frank. He’s the one who needs it. He’s having a really hard time placing all of our critters. Many inquiries, but no one actually shows up, and he’s getting quite frustrated, and I don’t blame him. I wish I could put them all on a boat like Noah’s ark and bring them here to me. I miss them so much, and really want good home for them.
We got the titre results back from the lab on the dogs, everyone passed, yay, although Stina was close. But we can now use 5/24 as the date — 120 days from then they can travel here. I’m going to work on plane reservations, getting a vet to meet the flight, etc. from here. So September for me to have my dogs. I’m so excited. I can’t believe how much I miss them.
I also managed to snag a time on Friday for an MRI — someone cancelled, and I called at the right time to get that slot, which is awesome. I see the neurologist on Saturday so it will be great to have the second MRI for comparison purposes. The major thing is to see how fast this fucker is growing. It would be also nice if someone could identify exactly what it is, but I’m not sure that’s possible. Everyone has a theory, but it’s a weird thing in a weird location. Go me for being unusual.
I’m still sort of fascinated by Dr. Kim in Houston. He seems to be the guy who operates on tumors in this location most often. He also seems to be the one who understands the symptoms, and I am all done with doctors who tell me that my symptoms aren’t coming from the tumor. I’m pretty sure the Missouri dude checked every possible other thing, including inner ear infections, heart problems, etc., and concluded that I am very healthy, except for this walnut sized tumor in my head, which he kept telling me wasn’t causing my headaches or making me pass out. Right.
I’ve got blood work to get done tomorrow, so we’ll see how far into ketosis I am. Since I hardly eat anything, I must be there. I’m lucky if I get 400-500 calories a day. The wrist bands Lili got are controlling the nausea though, and I spend all day nursing this or that, but I’m just not hungry at all, and I worry that forcing myself to eat will bring back the ick, so I just pick at stuff.
I’m glad you’re writing, and look forward to seeing your notes. Missing you on Facebook, too.
If you come to Houston, its free room and board at my place.
Glad to find you writing and living in the moment. I’m so touched that the people who love you have drawn around you. Bless them, all.
Lisa I just read your post and you are in my prayers.
Best wishes from Alabama.
Lisa
More of what everyone else said. Adding my love to the bucket. Couldn’t think of better people or a better place to be.
Janet
Another honest, moving and inspiring post. Thanks, Lisa. Wishing you all the very best and feeling a bit inadequate in the ” finding the right words” Department, so I’ll just say what i think. Good luck with the upcoming appts. Great news about the dogs, strength to Frank in his toils, and your soon to be togetherness (though not soon enough) and big love to everyone who is giving you the chance to do only what’s necessary. Hope you get your appetite back and aches, pains and seizures are seldom (/ not at all!). Look forward to seeing your posts in my inbox every morning! Lots of love from Berlin xxx
Things to up your calories – avocado shakes, bullet proof coffee, lots of cheese. Are you on reddit? There is a great keto subreddit, and a keto recipes subreddit if you haven’t found them already. Sorry you are going through this but you seem to have an awesome support system in place!
Lisa – a couple of good books are Radical Remission, and The Cancer Fighting Kitchen Cookbook, if you love to read. Is the doctor you are interested in at MD Anderson? They are top-notch for western cures, and this place is infused with big Texas heart.
It’s interesting how our bodies will react to that level of stress and busy-ness, and will force a reboot. I do hope Frank can find ways to get his own oxygen mask on. And I’m praying for you – blessings and peace on this journey. It can be a wild ride.
Oh, a thought from a practical perspective, I found acupuncture really helped my nausea…
And one more – I should have read more of your posts before the book suggestions! My apologies. Forget the cookbook, and I’m glad to read the wristband is working so well for the nausea!
Oh Lisa, I am trying to stay in touch w/ Frank he is doing good from what I can tell, all things considered.
Will your dogs be flying directly into Kona or thru Honolulu? Might Frank be on the same flight with them? That might help smooth things for all concerned. That is the way we always traveled with our animals and also the way Jonathan has traveled w/his. Japan has pretty much the same routine for entry of cats &dogs-takes 6 mos. minimum. I don’t want to post here abt your tumor & what UCLA friend has recommended. You are in the right place to be cared for for now. Bye. If you & Frank ever intend to go up Mauna Koa or Mauna Kea, you might want to have a few of those warm clothes😇