Surgery again. Health update.

Hello my friends. I had posted over on Instagram beforehand but wanted to post on here. This is health stuff so if you don’t like reading about that, feel free to skip it.

Me Directly before surgery

Six days ago I had another surgery. sigh. this one was supposed to be had in 2020, but was canceled due to covid and then pushed off for the craniotomy and radiation. now it's was time to address it. of course, i am a high risk case. nothing seems to go easy for me. I had adenomyosis (basically endometriosis but inside the uterus), I also had some endometriosis and one ovary was stuck to my intestine and the other was twisted like a corkscrew. I love looking at medical pictures of my insides (yes I am weird lol) but a few of these made me turn green!  my uterus was calcifying, yuk, so it was smashing my bladder and colon.  Also I was blessed with a retroverted and reflexed uterus so it was mashed backwards into my intestines and could be the reason my low back hurt so much and sciatica. Needless to say the thing had to go.  The inflammation in my body alone was painful.  I felt so bloated and 6 months pregnant for many years.

I had a robotic hysterectomy Apr 16. the major problem is that in a robotic hysterectomy, you are almost upside-down for about 4 hrs..... painful for a normal person. dangerous for me with my brain tumor still around my carotid artery and pushing on my brainstem..... that's a lot of time that blood and pressure to be on that scary area.

I'm tired of surgeries. the  brain radiation destroyed my pituitary gland, and thus, I have no hormones going on anyway, I'm medically post menopausal… at 45. I am not able to do hormone replacement therapy because estrogen will causes the remaining tumor to grow.

This was my third stomach surgeries. I have never ever felt such excruciating pain. I've had roughly 20 surgeries total in my life.  I can't do any pain meds. not even Tylenol.. even child birth. brain surgery. and a broken ankle were less pain that i felt with this one.  I woke up hard. They couldn’t get me to stay awake. I threw up bile (not cool with a stomach surgery), I couldn't walk on my own and I could barely pee.   All 4 criteria for them to keep me…. did they?  NO.  They sent me hoe in the most unGodly 45 min ride of my life.  I was scream crying by the time I got home and I think I remember telling my husband very loudly that I didn't’ care if I peed right there in front of all the neighbors on the front steps.   Oh and the nurse didn’t put my shoes on and it was a thunderstorm I walked to the front door in, in socks, floppy, cold, mushy socks.  The below picture is me when I finally got to my bed.  the US health system machine is a disgusting money making mess with no compassion  Slice, dice, and move you out so the bed is free to the next.  I’m sure it will cost 500,000 dollars or more for this surgery.

The first few days I was unable to eat or drink anything and I just laid in bed staring at the walls. My mind was too focused on the sheer pain and I could do nothing else.  Reading about the women that went and had a hysterectomy and were just fine, it was a breeze, and back to themselves the next day…. I wanted to punch them, repeatedly (sorry not sorry).

Today is day 6. I know I have a long journey ahead of me to heal with all my issues  (15 weeks doc stated).  The pain is some less, my incisions are itchy, I’m terribly grumpy and uncomfortable. I hate sleeping on my back and I’m just so over it ALL.    Oh, the dissection of my former uterus was all benign, no C word.  YAY! that was nice to hear.  Oh! and 3 days ago was my 3 year crainiversary.  I cannot believe my world was flipped upside down 3 long years ago!   No more surgeries for me.  I’m done Now time to move forward and heal and do the things I love to do, like sew, embroider, and snuggle my pups.

I am stuck on bed rest the first 8 weeks at least  so I am hoping to do some catching up on blog posts and makes I haven’t yet had time to post.

I’m am quite disgruntled about having to miss Me Made May another year (missed in 2021 due to craniotomy)  But I’ll be cheering on the sidelines and collecting notes on things to make from all of you!

Keep moving forward, Kristin  

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 rest of my life, yearly MRI's, 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.  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 or more 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

A Tunic and 2 Dresses ~ Sinclair Dakota & Joanne & a mashup

(health update at the bottom of the post)

Pattern: Sinclair Dakota Tunic

Date started: 11/19/20

Date finished: 01/16/21

My measurements at the time: 39 Bust/ 32 Waist/ 45.5 Hip

Size Sewn: 12 B/W and 16 Hip

I used Tunic, short sleeve, crew neck, placket, and standard waist

Alterations: 1/4” square shoulder (I usually do 1/2” but the shoulder on this looked high enough)

Cut on the 16 Height line for peplum; 16 width for sleeves which made the sleeves 1/2” bigger on each side so I added 1/4” to the bodices at the armpits to account for this – it gave me the perfect width for my larger biceps

Fabric: Double brushed poly Butterflies, 1.5 yards used, Purchased this on Aug 9th, 2019 in a Knitpop fabric auction for $5/yard. So $7.50 total to make the top.  Thoughts: I LOVE this top!  It makes all my 90s teenager dreams come true. It fits great. I love the length with leggings. I love everything about it. I have no complaints.  Sinclair instructions are awesome. I had zero issues sewing this and the placket went together easily too.  I want like 10 of them.   Pattern: Sinclair Joanne Dress

Date started: 12/14/20

Date finished: 01/23/21

My measurements at the time: bust 40, waist 32, hips 47

Size Sewn: 12 Bust/Waist and 16 Hip

surprise belt matching to the dress!

Alterations: 1/2” forward shoulder adjustment – normal for me. and 1/4” bicep adjustment to sleeves (I cheated here and just added 1/4” to each side and they fit in place just fine).

Fabric: Double Brushed Knit Prints Floral Navy Blue/Red/Pink/Orange/White, purchased 06/17/20 from fabric.com for $5.38/yard so $13.45 total for the dress.

Thoughts: Awesome dress. I love it lots.  I feel like the belt is WAY too skinny but everything else is awesome. No complaints! Easy sew, no issues with instructions. I can throw it on quick and it looks nice without any effort.

Pattern: Renfrew/ Lady Skater Mashup Dress - for Miss K

Date started: 02/28/20

Date finished: 02/28/20

Size Sewn: 4

Alterations: added 1.5” to skirt hem – K wanted it longer

added 1” to sleeve hem length and no cuffs per K

removed 1” from modified bodice so it met the skirt as it should.

removed 2” from bodice height so it would hit K at the right spot on the waist.

took in 1/2” at shoulder by neck to 0” at shoulder point for K’s sloping shoulders.

(It needs a shorter neckband now by 1/2” due to the sloping shoulder adjustment).

Fabric: a charcoal poly blend knit jersey. I think I grabbed it from the Walmart mystery fabric bin.  I used 2 yards.

Thoughts:  K asked for this dress to be made last minute for my Aunt's unexpected funeral Feb 2020 and she doesn’t ask for much anymore so I made it that day on the spot. She looked great in it but she will not allow any photos of her in it to be posted.  I am double the size of K so its a bit stretched out here on my dress form. She doesn’t wear ANY dresses anymore so this was a special dress to make for her and I’m glad I did it right!

Now for the health update.  I wish I had better news, and I’m going to keep this very real.  Brain tumors and craniotomies are no fun.  Recover has been viciously hard.  I have been dealing with a completely locked up stomach for almost 4 months.  I can’t eat any solids without excruciating pain.  I only get about 900-1100 calories a day from nutrition shakes and bananas. I’ve lost 35 lbs these 3.5 months and GI doesn't think there is a reason why.  The GI says its from the brain surgery and the Neuro says no way.  So I’m stuck in a medical crack and struggling.  Gobs and gobs of my hair fall out all day long and it makes me so depressed.

My seizure meds damaged my liver so I am now unmedicated and dealing with weird episodes.  My kidneys decided to act up.  My heart too.  I’m being told again I possibly have Lupus.  I can’t look down without fluid dripping out my nose but the Neuro swears I have no cranial leak.  On top of all this I had my 3 mo MRI and it shows FIFTY percent of the tumor is still there! It's wrapped up in my midline and around my carotid artery.  I will need LOTS of radiation and they don’t really know how my body will survive that since I can’t even eat and I don’t tolerate meds.   I meet with them beginning of Oct to re-MRI and set up the plan. They are trying to figure out my episodes – if they are seizures or not seizures and how to medicate me when my stomach won’t tolerate any meds.  I want to bury my head in the sand like an ostrich and forget all this crud.

Honestly I’m completely broken as a human being.  I’m massively depressed and angry and not coping well. I lay around a lot and I cry a lot and I miss my old life.  I’m having tons of PTSD and trauma issues both from the surgery and things in my past - apparently major life surgery can bring up past demons.

I miss my sewing room. I miss my old life – even with the chronic health stuff.  I miss living.  I don’t feel much like I’m living right now.

There has been some progress in the gray skies – I can now walk fully without a walker or cane. I can spend some time looking at a screen.  I embroidered a little bit at my machines last week.  I’m slowly trying to emerge from this cocoon of hell. I can do a few household things again like laundry and dishwasher.  I didn’t grasp how slowly healing would be after this kind of an operation.  I have a short window of energy and time before I need to lay down again.  I just feel bad. All the time. I’m not ok.  Maybe someday I will be. It seems so long from now though. So I figured I might as well try to catch up on as many older makes as possible since I can’t sew just yet.  I have a ton of things I never got posted to the blog.  Some pics will be pre-surgery and some will be now. I can’t do my makeup as the entire right side of my face feels weird and hurts from the brain surgery. I have 2 very large dents on my right temple and you can see (and I can feel) one of the plate screws there. They had to cut my facial nerves on that side and said it will take time to feel “normal”. Whatever that means anymore   So my pics will have to be what I can muster up right now.

Thanks for reading and being with me on my crazy journey!  Look for a slew of new blog posts in the next coming weeks!  I miss you all!!

Kristin

alive. healing. surgery Monday, came home Thursday. painful, very painful.

surgeon thinks she got 90% of the tumor. this is all still so surreal. i cannot tolerate any painkillers so its difficult. ***update** she did not get 90%, she only got about 50% out. the rest is not in an operable spot really. 

my memories and mental clarity are all still intact. I cant ask for more. i can see, smell, etc. 

I have lots of unbalance with walking and blurry vision in the right eye. but the tumor was around my eye so expected. these things should settle eventually.

Just wanted to let you all know, I'm still here. appreciate you all.

Life throws a curve ball

Hello my sewing friends. I have sewing makes I haven't shared yet, but life has thrown me a major curve ball.

I posted on my Instagram but wanted to share here for those that do not follow Instagram. I found out about 3 weeks ago that I have a large brain tumor. It is sad, shocking, scary news. I had no clue and feel totally blindsided by this. Yes, I have chronic health issues and migraines, but I really was not expecting to hear tumor.

My thoughts and emotions are all over the place. A week before the tumor news we were pre-approved to find a new house. We were so excited to be house hunting. Two days after the tumor news I missed the last 2 stairs and broke my foot, AND THEN 3 days later found out I still have C. Diff. I feel like I just cannot win! I have been having much more painful headaches and my right side of my face feels like a horse kicked it since about August. I actually had to argue with my doc to send me over to my neurologist. I have been having blurred vision in the R eye for about a year or so now and weird episodes they think are silent seizures. I've cried a lot. I am angry, I have asked why, how, WHY. I wonder how much shit one person can be given to deal with in life. And then I cry again.

All I want to do is sew and craft and enjoy a nice, long, boring life.

The last 3 weeks have been almost constant appointments and meetings with surgeons and tests. We live within 2 hours or Rochester Mayo, but driving there every other day is exhausting. My whole family is just exhausted, shocked, and stressed.

Because the tumor is large, and long I have to have a full craniotomy. It is around my eye nerve, pushing into my sinus and nose and also around my carotid artery. Yes, it definitely sounds super scary. I am utterly terrified. I have to have 4 surgeons because of all the parts the tumor wraps around and pushes against. My main surgeon says 8-12 hours surgery; 5-10 days in hospital; and about 3 months recovery.

I wanted to let you all know and say that I probably won't be posting for about 4 months. I hope to recover well and get right back to sewing but I have zero idea how any of this surgery and recovery will play out. Everyone recovers differently I'm told. Please offer prayers if you are religious, and good thoughts if you aren't. I appreciate it and I appreciate all of you!

Thanks and happy sewing.

Kristin