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

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.

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.

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).

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. <3 Thank you all for being here and Happy Sewing!!

Kristin

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.

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.

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.

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).

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.

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.

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.

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.

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. (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