Update to my health update from 2 weeks ago. Then back to actual sewing! Yay!

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I wanted to write a follow up blog post to the update health post from two weeks ago period now that I’ve had my MRI and met with the doctors and had time to process everything.

A quick refresh, I’m almost one year from my craniotomy, and 2 months from proton brain radiation. it has been an incredibly hard journey both mentally and physically. I wasn’t prepared for the mental part and honestly I wasn’t prepared for the physical effects afterwards either. I feel like the doctors just do not prepare you at all for something this big.

Anyway back to the results. Every time I go in for an MRI, which is every three months for the first two years, it is nerve wracking because I don’t know if the tumor is going to grow or what damage they’re going to see this time. The oncologist told me for the next five years they will watch me to see what kind of damage the radiation is going to do to my brain. Yay. Thanks. About a month ago I started having lots more head pain and my seizures came on stronger so we started a course of steroids. They said my brain decided to swell again probably due to the radiation. I am just now weaning off the steroids and terrified the pain and seizures will return again.

This MRI did shock me a bit more than my last ones, because it was more detailed in the report. I’m not sure if this is because this they can see more now that the surgery is done or what but it was way more detailed. Basically they could only get half the tumor out with surgery and it is still a monster in my head. He is pushing on my brainstem now which I never knew in any of this. That was a shock to the gut. He’s also still wrapped around my carotid artery, down around my eye, in my sinus, and in my midline. The doctors keep reminding me that there is always the chance of another craniotomy and more surgery. I want to tell them to shove it, the first surgery has been hard enough I don’t want more.

My concerns that I brought up to them were pretty much disregarded. The oncologist said “we don’t know what kind of damage radiation will do or side effects will happen from that.” And the neurologist said “brains are all so unique and special and we really don’t know much about what happens with each person after a craniotomy.” So basically, my face is going numb at random times, or stabbing pains randomly and they don’t care. My eye is going completely blurry, they brush that off. And I have a host of other issues going on and they don’t seem to care. It is frustrating.

I’ll be doing another seizure study in the next month, but from home! Yay, no in hospital one – In hopes to capture my seizures to see how we can manage them. This is difficult since I’ve tried 7 medications in my body just refuses to tolerate any that help with seizures and mine are so random that we don’t even really know what triggers them. The neurologist said if we can see where the seizures are coming from then we can go in and remove that part of your brain. Hell no. You are not taking any chunk of my brain out I am sorry.

These guys really help me with my sanity.

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So this update is not really a great one, but this situation is not really a great one. I’m just trying to process everything at this point because I realized at my update two weeks ago that the doctors are not going to do anything to help me and I am on my own in this. So I’m trying to figure out how I move forward? What does my life look like now? Who am I as a person now? How do I live with this monster in my head because it’s not going away ever. Where do I go from here to get to a semi peaceful existence and some joy in my life. What is my purpose in life now?

I’ve been doing a lot of spiritual and emotional work and I’ve been trying to get my head in a much better space. I know I need to find a way to live my life with this tumor and adapt the things I love to do to work with the limitations I now have. I know that sewing is my passion and joy and I need to find a way somehow to get back to it. I have been spending quite a bit of time with my machine embroidery the last two weeks and doing little chunks of sewing here and there. It is my path to joy and I will find a way to continue to so.

I wanted to say thank you to everyone who continues to read my blog follows me on my journey and thank you for the comments on my Last Post and any post. I read every comment, usually twice, because I like to be connected to the sewing community; it makes me happy and it makes me feel human. I am very thankful for your thoughts and prayers and comments. I do plan on replying to each comment in my own time, because I just have to manage my energy differently now. But know that I read every single one.

I’m going to turn my blog back towards sewing. I do still have surprisingly a bunch of backlogged makes that I still haven’t posted, so look forward to seeing them soon – slowly. I also am slowly chunking away at bits of new sewing here and there so you will see new stuff from me too. I placed my first fabric order since surgery so I have something to look forward to and motivate me! I will update health stuff like I used to from now on with just a paragraph at the end of my sewing posts.

I even started to participate in the SweetPea Mystery Easter Quilt A Long.  I love their embroidery designs and I need something to look forward to weekly.  They are very time consuming and energy draining but I will just do it at my own pace.  I’m excited to watch it unfold.

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I am including the findings from my MRI because some people like to read that fun medical stuff. Skip it if you don’t want to read it.  I know I like to read the medical bits and pieces, as long as they’re not about me, lol. The report goes into good detail so you can see just how intricately this monster is still wrapped around my brain.  My husband focused on the words “stable” and ignored the rest.  He’s such an optimist.  Yes dear, stable, it hasn’t grown in the last 3 months.  But the oncologist said its way to early to even tell if it will grow more or not.  So I disregarded this and focused on all the “holy crap this thing is everywhere in my brain like a snake.”  (we are polar opposites but we balance each other usually).

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So like all humans, I will go forward. I’m stubborn as hell and I refuse to be kicked down and I will find a way. Life is tough, but I am tougher. ❤ Thank you all for being here and Happy Sewing!!

Kristin

14 comments

  1. I keep on keeping you in my heart. As you sew and think, remember that others are sewing and thinking of you at that very moment. With much care…..

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  2. Very glad to have the update! You’ve got the right attitude: just accept what is so that you can find a way to live with it. I wish it could be easier!
    I am looking forward to reading your posts and seeing how you adapt and hold on to the joys you know.

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  3. I think of you all the time and want you to know that you have another stranger on the internet wishing you joy and better days ahead. I know what it feels like when your body betrays you. Just remember that you are still you and just take every moment as it comes. You are an amazingly strong person. Wishing you only the best.

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  4. Wow. Such a huge challenge.

    My own health journey is endocrine-related, so definitely not in the same ballpark, but what I’ve been finding and what everything keeps circling back to is a magnesium deficit. Unless you have a medical reason not to, consider finding ways to increase your magnesium. Do your research, look for peer-reviewed articles. Doctors have been useless for me, and I got tired of my issues being brushed under the rug, so to speak, so I started researching.

    Always remember that you own your body, you’re the one who lives in it, and you’re the one in charge of your destiny. The doctors are there to assist you, not control you. And I’m really sorry that they appear to be brushing off your concerns as nothing that they’re willing to acknowledge and validate. Trust yourself.

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    • thank you so much Jill. Im sorry you suffer as well. I find it super interesting about the magnesium and will definitely look into it. i used to take epsom baths 3x a week to soak up a bunch for my tired fibromyalgia muscles.
      also, the radiation was sk close to my pituitary gland that they day it will eventually be destroyed, they just watch and wait when. my adrenals were just tested and my cortisol was surprisingly off the charts. so i have to figure that out myself. i do a lot of peer review reading already. its very helpful.
      i really appreciate your comment and suggestions. thank you and take care!

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  5. Thank you for the update.I continue to keep you in my prayers. You are moving through this it’s good courage. Take care.

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