We’re almost there. My surgery is Wednesday.

It’s what we have been working toward all this time. Yet, I am a nervous wreck.

I’m not really sleeping much as my anxiety pushes into my dreams and wakes me up. I’m trying to not let my fear show on my face, but Tony knows me too well.

He can see in my eyes that I’m afraid. Every time he leaves for work over the past week I have cried.

He has to work tonight and It’s 7 AM and I am already dreading him having to leave me.

There’s no way to fix this. I have tried all my tricks. Not even the Ativan is helping right now.

heJust two days now until 12 hours in the OR.

At the end of that day we’ll know more about what the rest of my life will be like and be on the watch for the complications.

Who wouldn’t be afraid?

Father Nick came to visit me on Friday and that helped soothe my soul some. He’s such a wonderful kind man. He is truly what a Christian should be. We talked and he prayed with me.

On Sunday I got to “attend” services at his church via the internet and that helped as well. Prior to COVID and then getting sick I had planned to start attending the Episcopal Church he heads but of course, everything went nuts.

I’ve been through a long time of a lack of faith. I had a large crisis of it, went in the opposite direction and ran from it. A few things have helped bring me back to it and I’m not going to go into that here.

I’m just glad it’s back.

Now, to get through Wednesday and beyond.

Until next time.

Suzy

Tonight just before Tony left for work I had a huge breakdown.

We had been talking about the time surrounding my surgeries last fall when I was extremely sick from infection and the multiple procedures. I was so ill that it affected my mind in some horrible ways.

I had several hallucinations during the time. Some good, some bad, a couple horrendously scarring.

There is no doubt I am going to need some serious therapy after all of this for PTSD.

As we were talking about how sick I was and how, hopefully, post this surgery I’ll be in better shape (and not on a vent or having a tracheotomy.)

I had a flashback to one hallucination that is so real to my mind that I burst into tears.

You see I hallucinated that we were involved in a massive shooter situation and Tony was going to die in it.

Just writing that out is hard, but the imagery in my brain is so real even as I know it didn’t happen and he is fine.

The night it happened, I held onto his hand so hard and begged him,as best I could being trached, to stay, but the ICU nurse forced him to make me let go of his hand so he could leave me.

And, just writing that I’m crying again and cannot even see what I am typing.

I’m praying that we can get the doctors to order that he can stay. We have an order in place now that he can be here overnight.

I also hope I have a nurse that doesn’t tear my husband from my hands when my brain is telling me he is going to die.

This past 10 month has been so traumatic in so many ways.

I just hope, and pray, the next 10 will be better.

The surgery countdown is moving so fast. September 8th is the day. Let’s get beyond the surgery, healthy and healing and with no complications.

Other than the trauma already in place. I’ll fight through that. Dammit, I just want to be better and home.

I miss my house, my town, my job, and my family so damn much.

17 days from now. It’s too far and too soon all at once.

Stuck in a bed for almost a year now, 10 full months of illness and well, I’m over it. I’m ready to be back to my normal life. Running around CB, writing about the town and town government for the paper. Taking pictures of events and people and every little thing I see.

For a part of my hospitalization I was so ill that I didn’t take care of myself. I didn’t keep up with my skin routine or anything other than watching tv on my Chromebook.

When my eczema was screaming at me I decided I had to go back to taking care of myself. Tony brought me my skin things, Cetaphil to wash my skin, a generic spinny brush to exfoliate, my eye cream, the L’oreal face serum and night moisturizer I use.

He brings me a basin of warm water and I take my time, wetting my skin with a cloth, rubbing my Cetaphil cleanser in, then rinsing it off, gently. Using the brush a couple times a week to make sure the dead skin cells are gone.

I dry my face, then rub my eye cream in, lightly with a soft touch as I was always told that tugging on your eye skin would hurt it.

I pump two pumps of Revitalift serum on my fingers and rub that all over my face, it goes a long way and covers even my big face with ease.

At night the night moisturizer goes on over it, another L’oreal product aimed at middle-aged women like me. I get compliments from my nurses on my skin on a regular basis, told I don’t look 46.

I always tell them it’s because I don’t have children, when really, I always looked much older than I was until my mid-30s then it seems I have slowed down in the aging process.

I don’t study my skin, but I glance at it to make sure I have rubbed all the product in and that is my entire skincare routine.

Keeping it up has helped with my spirits. I feel better and stronger when my skin is taken care of. It’s one of the few things that help me feel like myself in a situation that is beyond anything I thought would ever happen to me.

I miss food.

I have not had a drop of food since election night 2020. Yes, since November of 2020, no food has passed my lips.

A fluorescent yellow bag of liquid drips into my body over 16 hours providing me with nutrients I need to live. The couple of times I have been without it due to one mishap or another I have felt worse the next day.

Most of the time I am not physically hungry. Being fed Total Parental Nutrition(TPN) takes away the hunger. At least the physical hunger.

Mentally, I am starving. You do not realize how much food plays into every day of your life until it is taken away.

To feed my brain, I watch cooking shows, or Youtube food shows where someone is eating at restaurants to review. It’s like a bit of torture that helps a bit.

Or I read menus of restaurants and dream of what I would eat were I allowed to eat. I even know the foods I want when, and if, my body adjusts to allow me to eat again.

I want two hard boiled eggs, a slice of buttered toast, preferably rye, and grits with butter and salt. I want an Impossible Whopper with french fries. On the side I want mayonnaise and ketchup mixed together to dip my fries in. I want cheese pizza for dinner.

I really want a large bowl of broccoli with butter and salt, but it may be a long time, if ever before I can eat broccoli again.

I need to sit down at a restaurant with my husband and order too much food because we haven’t been to a restaurant since before the pandemic. I want to go out to eat with friends and share drinks and laughter and talk to them.

My mind wants food so badly, that I dream of it at times. I dream of Ethiopian food, picked up with injera and spooned into my mouth. It is my favorite non American food and I adore the whole ritual of sharing with one another and eating with your fingers.

I have lost some weight while on TPN. I am likely to lose more following my surgery. We don’t know how much of my intestines will be left so my ability to eat depends on that.

It’s funny, I changed my diet to vegetarian, plant based, lots of vegetables, no meat at all, only whole grains, and I ended up with this. It’s like when I quit smoking and two years later was diagnosed with renal cell cancer.

It’s bullshit. It is as if the harder I try to care for myself the worst off I end up. I am just hoping that in the end, my body is healthy, I can eat the food I enjoy now, which focuses on vegetables. as someone who grew up extremely picky who ate a very limited number of foods I am hoping I don’t end up forced to life like that.

Let’s hope I don’t end up with a body that won’t digest whole foods.

Just a little while ago my lovely nurse hooked me back up to the yellow bag of food for the night. I can her the IV pump pushing it into my veins and through my body.

It is keeping me alive and helping to heal my intestines so we continue on in hopes of a return to normalcy.

Me, Tony, and our little house in CB. Oh, but my home is something for another day.

Thank you for reading my rambling thoughts.

Tony sent me a lovely flower arrangement on Monday. Yellow roses surrounded by daisies. Oh, daisies. My favorite flower in the world are all manners of daisies.

From the pop art daisies that grace my right arm in pinks and blues and oranges to the white simple ones that are what most people think of when they see them.

Our wedding included daisies even though it was in October and out of season, solely because I required them to be a part of the day. The small arrangements of silk flowers still decorate our home. (we used silk because of allergies in the wedding party.)

Back to the daisies sitting here in front of me. Tony sent them to me to help keep my spirits up. He is of the mindset that the happier I am, the more mentally strong I am, the better the outcome of my surgery will be.

I agree. I went into the surgeries in the fall, not knowing what would happen, and often unaware as I was in and out of it.

Five surgeries to remove the abscess that had walled off my intestines, to clean out my body, to make two ostomy/fistula sites to help keep my body functioning.

I was pretty damn sick. According to my surgeon, I have the most complex case he’s ever seen, but he has assured me he can take the pieces of my intestines and put them back together.

Even though all my doctors were sure that I wouldn’t make it to this point, he know is confident he can fix me.

My spirit and mind fought to stay here through all of the surgeries and nights in the ICU. Nights were much of what I remember is being turned on these yellow wedges to keep my body from developing pressure wounds.

I much prefer the yellow of my daisies to the yellow of those damned position wedges. My hope is that being more alert and oriented going into this surgery will help me to deal with the aftermath better.

Much of November and December is lost to me. I spent most of it in the ICU, Tony standing beside me for the 12 hours a day of visitation, holding my hands, rubbing my head, and rooting me on to survive.

There is one night I remember, that I told him to go away, it was time for me to go, but he had to leave first. He refused and held me all the tighter to this world.

When it would get to the point that it was obvious that I wanted to not be touched, he would sit there and just watch me, his sheer will pulling for me to survive.

There is no doubt in my mind that his love and strength are the reason I am still here and facing the toughest battle of my life. And, I know he’ll be here beside me, holding my hand, rubbing my head and my feet, pulling the toughness out of me so I will continue to fight.

Physical Therapy today was tough. I was in pain already and cranky because of being pushed towards going into a nursing home. they want me to go to one until my surgery, but, I’ll save tht whole saga for tomorrow.

Thank you for reading and your comments, love and prayers.