Eyes wide open

Eyes wide open It’s funny the things you hear through the grapevine. Do you see her out there with no hair and no makeup? Get her a wig! Put her face on! Not that I’ve worn make up or cared in over a decade. I’m very curious about how this hair is going to grow out. Lots of gray from what I can see so far! I’ve never really played with my hair very much — long and straight, mostly put up in a braid. And now that I live in a tropical climate, it might make much more sense to keep it cropped short!

I’m sort of fascinated with how wide open my eyes are lately. It doesn’t hurt! I can look in all directions without pain. I’m not hiding behind hats and glasses and dark rooms. It’s sort of amazing.

I’m still a blazing furnace of hot, despite being down to two steroids three times a day. I can definitely feel when they kick in, and I radiate heat. No fever or anything, so just cool cloths and fans and a nap, which is the only way I can tell that I’m still recovering. I feel so much better!

I’m also still eating everything in sight. Two breakfasts, two lunches … a smoothie for a snack, and tapping my fingers waiting for dinner. Still losing weight at about a half a pound a day, despite eating so much. I think I have a year’s worth of deficit to make up for!

I’m so very grateful how this turned out. I was prepared for months of recovery. They said it was to be expected! I sort of keep waiting for something to go wrong, but honestly, I’m just doing great. No pain, no deficits, every single symptom that I had is GONE. I feel like a have something to say about the whole process, but I’m not quite sure what the forum would be. But imagine a brain tumor patient without the network I had? I would have died. I also felt completely dismissed as a female patient with symptoms that didn’t follow the male playbook.

We are hoping to get Disa over here first, and I can’t wait. Hopeful date is October 17th. It’s very expensive, and I haven’t worked since I passed out at work in February, so financing it all is going to be tricky. I miss my girls so very much.

4 thoughts on “Eyes wide open

  1. I agree you have to tell your story. You had a village and yet almost missed the opportunity to continue living. How many more die without treatment? You’re an inspiration to me and I am sure you would be to others!

  2. “I also felt completely dismissed as a female patient with symptoms that didn’t follow the male playbook.”

    There is something here. I think if you come across any woman who is chronically ill for whatever reason (allergies, asthma, and anxiety for me. the As) they will resonate with this experience. The ingrained sexism in the medical world is astounding, and it’s not all in attitude. It’s written in the textbooks.

  3. Don’t lose the hat yet… just until you have enough hair to keep from getting sunburnt. I am.so glad to hear YOU. The medical diagnosis you 1st had angers me. Had you not pushed forward it would not have been a pleasant time. Should sue the bastatds! Sorry, just makes me angry. I am sooo glad you are doing well.

  4. On your hair growing back in… I’ve lost mine from chemo three times and although it is different circumstances, I’ll add my experience closest to yours.
    The last time I knew I’d be losing my hair again, I had my hair buzzed and then it did not all fall out. Everything fell out except what was gray… Gee, thanks! As my other hair eventually started to come back in it was like peach fuzz that I could see through the gray. Looked like my scalp was dirty. It came in this last time just like it originally was. It was about 5 months before I had it trimmed up though I really liked it that -short and simple.

    I’m so thrilled that you are doing great and if bet everything you dod helped. So much of it is your attitude and determination. I’ve had treatment for fallopian tube cancer, basically for the last 7 years, finally have had 14 months with no chemo, feeling great, perfect blood work, loving my garden, grandkids and recently built forever home. Great healing thoughts and prayers to you!

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