1 year Very Raw Health Update

1 year ago today I got the news that I had a very large brain tumor.  It covered my entire right frontal lobe.  For specifics, It was in my midline, wrapped around my carotid artery, moved down into strangling my optic nerve and into my sphenoid sinus.  I was told operation was the only option, my brain was so swollen, that I would not make it very long if left be. This news completely stopped my world. My world ceased to move as everyone else around me continued on with their lives – mine just stopped.

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Terrified is not even close to a word to describe what I was facing at only 41 years old.  I then learned I was also having seizures – great.  The day after the tumor news I fell down the stairs and broke my foot.  I can’t make this crap up. I don’t even know what happened to this day. I was walking down the stairs and then I was on the floor. They think I had a seizure and fell.  6-8 weeks in a foot boot and knee scooter in a 2 story house is not ideal when you are concerned that you might not even live past your tumor surgery in 2 months. I was angry. I was confused. I was depressed.  I was scared shitless.  What about all my plans? My passions? My dreams for the future?  What about my kids, my family, my DOGS!  I spent a lot of time in self reflection. I sort of went into myself, closed off from the world that betrayed me.

April as you know, I had my craniotomy and lived. Yay! That is where I thought things would go upward and return me to my normal life.  But my normal life has not returned. Recovery has been extremely difficult. My other chronic health problems aren’t making it easier. I cannot tolerate any pain killers so after surgery was excruciating.  I couldn’t walk without a walker – my balance was gone. I had to be helped to the bathroom, I had to be showered by my husband.  I was completely mortified and severely depressed.  I kept having complication after complication. Days turned to weeks, turned to months, turned to this entire year.  All this time I JUST WANT MY LIFE BACK.

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I have issues with seizures still and they can’t get them controlled.  I have tried SEVEN different seizure meds with my body not tolerating any.  They have damaged my liver and my gi tract or turned me suicidal.  Did  I think a craniotomy would be easy? NO, but i was told all these nice things by the surgeons beforehand.  “oh your head will feel relief, oh you will see better, feel better, be better. we have great aftercare to help with any side effects.” I’m sorry, this is all smoke blown up my butt. It is all crap and lies.  They cut you up and leave you to your own devices. My “aftercare” has been terrible. Doctors don’t know how to help, they don’t know what to do with me, or they don’t listen. My care is at Rochester, MN Mayo Hospital, supposedly one of the best in the world. Well, I don’t know if I share that feeling.  After surgery my gi tract shut down and I STILL A YEAR LATER cannot eat solid food, much less any food. They don’t know why and they don’t  help figure it out. Its hard to heal when you can’t eat properly.  Lights bother me, they make me nauseous. I can’t ride in a vehicle at  night without feeling like puking. I have to wear sunglasses if I attempt to go into home depot or Walmart.  I have no stamina. I feel faint often.  I have trouble concentrating or thinking hard things. I can’t seem to daydream anymore – images just won’t come up in my mind anymore.  I get overwhelmed and overstimulated easily and all this leads to too much brain activity and then seizures.

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After all this crap recovery, Yay I can walk again without help, I can shower usually without help, I can see a little better – now I have to deal with radiation.  Bogus. 6 weeks, 5 days a week.  Bless my family for driving me every single day because that was a long haul (2 hrs each way every single day). And I was in no shape to deal with any of it. I simply got dressed, and put myself in the vehicle and showed up like a mindless drone.  December I finished radiation and they were like “ok, bye, we’ll see you in April to see the damage radiation left”.   Well guess what. That damage came sooner.  We believe my brain is swelling again. My vision in my surgery eye is completely blurry again. I have massive pain in my head and it is so scaly, dry and itchy from the proton beam.  Still not eating. Still severely, extremely depressed. Still very angry.   I keep screaming “when will it end. When will this nightmare end and I get my life back”

(that radiation mask is TIGHT. LIKE WICKED TIGHT, you wear it for over an hour sometimes longer and it is STRAPPED DOWN tight into a thing so you can’t move).

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Because of these NEW complications I am back on steroids and they moved up my MRI and oncology revisit to today. TODAY. the 1 year mark of when this all started. I am so beyond scared to have this MRI the same day as what started all this.  You see, the radiation could have caused damage to my pituitary gland and other parts of my brain. The radiation could have caused swelling and scar tissue. Or the monster could be trying to grow back because they could only remove FIFTY PERCENT of the bastard tumor in surgery.  My surgeon tells me often to not rule out more surgery.

I miss my life. I miss my passions. All my Joy has been ripped from me. All my previous selfcare rituals I can’t do anymore.  Hot bath? Seizures. Sewing room mental break? Seizures and pain.  Painting? Reading? Video Games? Seizures and pain.  I feel like just this blob laying in bed day in and day out with nothing to do and no joy.  I have issues seeing with the blurry eye.  But the hard part is that I cannot look down, tilt my head and neck down because there is so much pressure from the surgery that feels like it slops forward smashing my brain and making me nauseous.  I try to push myself. I try to do things. It usually backfires.

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I spend a lot of time looking at all your makes and crying. I cry because the world keeps moving and I am just stuck. I cry because I want to be making beautiful makes and sharing them too.  I absolutely love the sewing community and I was so proud to be a part of it. I now feel so lost and on the outside of everything just onlooking.  I feel like I sold my soul with that surgery. I definitely lost my soul.  I lost my hope as more and more complications come up. My therapist says I have PTSD and major depressive episodes – well no shit. You medial people ruined my life, time and again.  My husband and kids have had to step up on so many levels and it kills me inside that I can’t be there for them.  I am not even allowed to drive. Its like everything was stripped from me.

Its a very scary feeling to know your tomorrows are not promised.  To go to bed and not know if you will open your eyes tomorrow.  My husband has to touch me every morning before work to see if I’m still alive because he is terrified.  This is all so wrong! My body keeps betraying me and now my brain does too.  I don’t feel safe in my own body and that haunts me.

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I’m not sorry for the completely raw health update.  I feel it needs to be shared.  There are not always sunshine and roses in the world.  Sometimes the rug gets completely ripped from you without warning.  Enjoy every freaking second of your “normal” lives for me.  I pray no one else has to go through this, though I know others do.

When you finish radiation and ring the bell you secretly hope its all over and things will go back to living normally. But the end of radiation is just the damn beginning of a whole new set of complications.  Radiation does help, but it also damages too.  There is no way to prevent damage when beaming your brain. Apparently I have to wait FIVE years to find out all the damage from the radiation.

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I will keep fighting to get past all this and return to some of my passions.  But it will take time. Time I don’t want to wait because I don’t know somedays how much time I have or how much time I can give. My energy is low and my heart is defeated and I’m a completely broken human being at this point. I keep asking how long does this all take to get past? When will I start to feel better? There are no answers. No one knows.

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So wish me luck today. the 1 year anniversary of the day my life stopped. I don’t know how much more bad news I can handle so this MRI and testing today better tell me something good. Because I’m cracking in all sorts of places.  My day starts super early and goes allllllllll day today. So I will update when I can.

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(I know I said I cry when I see your makes. I feel so many emotions. I feel sad I can’t sew now. I feel jealous you all get to. I feel guilty for feeling these things. I feel grief for my life lost, stalled, in suffering.  But I still feel happy seeing your makes. I would never want to stop watching you all sew and grow.  I pray every single night for healing and restoration.  I will get back at it someday, hopefully sooner than later. I think my sewing room is sick of me sitting in it crying. I walk through from time to time, touch my machines, look at my fabrics, but then it all depresses me more). I have tried here and there to sew a little. The looking down gets me sick, but also, the LED lights on my machines seem to bother my brain. When the foot pedal is going up and down there is a flashing of the lights and it sets off my seizure feelings. I need to find ways to adapt to my new issues I think.

Take care,

I miss all of you.

Happy sewing – I mean that. and thank you for sticking with me on this incredibly difficult, raw journey. May the path be better forward than it has been backwards.

Kristin

28 comments

  1. I am so, so, sorry for what you’ve gone through and I’m sending all my positive thoughts to you. I’ll be thinking of you.

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  2. I’m so sorry that is has happened/is still happening to you.

    Unsolicited advice incoming – ignore if you like 🙂
    When my GI tract decided it didn’t want to work anymore, I ended up with a G-tube (feeding tube into the wall of the stomach). Is a G tube or J tube (feeding tube into the small bowel) an option for you?

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    • Thanks birdmommy. I have been back and forth with my GI over the last decade about a G/J tube. He wants to save it as a very very last resort. Sometimes I think I’m ready and there but he keeps waiting. I guess its good to have as an option, but frustrating to watch my malnutrition keep getting worse and worse. I appreciate the advice ❤

      Liked by 1 person

  3. I am so sorry about your recovery woes (especially the aftercare), and all the unknowns of the future. I wish I had an idea of how to get you back to sewing again. All I can offer is to read your posts, and not discount your feelings, fears, and disappointments with chipper “this too will pass” or “could be worse” comments.

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  4. I think of you all the time, especially when I am sewing. Early morning is when I sew and pray, and your intentions are frequently on my mind, and that will continue. I use your tutorials and look through your archives–you are still participating in the community in that way.
    It does suck to realize that bodies fail, and that doctors really are no better than well-paid technicians, like body mechanics. They have some ideas, many times they have no notion of WHY something might work or not, but they just try this or that. I have a wonky heart thing that emerged in my 30s–to this day no one can say why or when or how it happens. Once you accept that they are guessing and hoping for the best–because really, you are probably a test case for them, it’s a little easier to deal. You don’t rely so much on them to fix it, and false hope doesn’t break you: you just try this next thing because who knows, maybe it will work.
    I hope you get good news today. I pray your symptoms will resolve and ease–I wish I could come bring you dinner and sit with you for a while. Are you able to visit with people, family & friends?

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    • Thank you Katie. And boy you are so spot on with your comments. They really are just guessing. And we in turn have to figure out how to manage the day to day. I’m so humbled that you think of me and pray for me often. It means a lot. I am not able to visit with anyone. They have me completely quarantined except my husband and kids. I can’t vaccinate or anything for a few more months they say. I would love to sit and chat with you. it would be such a great time. Thanks again ❤

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  5. I am so grateful that you shared everything. All your frustrations, disappointments and crap you’re dealing with, the after care mess is such crap! It’s been a very intense year for you, I’ve been seeing so many of your IG posts over the months. I’m glad you’re posting in IG your past makes! I really hope to see life updates from you as you’re able to and when you have time. I’m thinking of you and sending good vibes to you. I look forward to seeing your future makes when the time is right again. Keep in touch with us sewing folks bc we know you are a super important part of the community ♥️♥️♥️

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  6. I was so sorry to hear that you are having such challenges trying to return to life as you knew it. Please know you are in my prayers and thoughts. Sending you great hugs. Anne

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  7. I am so sorry to hear about the hell you are going through. I’m sending you all the healthy healing vibes I can. I hope so much for you that you can find some answers and hopefully get on the road to recovery.

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  8. Thank you for sharing this. I am going to appreciate every moment of my health today, and think of you when I am sewing. I will pray for your recovery.

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  9. I’m so sorry. Praying for some relief for you and good news today. Have you considered seeing a functional medicine dr? One saved my life when no mainstream doctors could help.

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    • Thanks Becky,
      I have considered it in the past. I’ve many friends who have went that route. I feel like they all come back with the same info. Take all these tests (pay out of pocket) and take all these same supplements (also out of pocket). So I am not sure how I feel about fnctional md at this time but appreciate the suggestion

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  10. I wish I knew what to say to make the physical and mental pain vanish for you. I don’t. What you are going through completely sucks. But your community has your back. We’re here for you. Virtual hugs.

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