Anxiety level 10

This is not a drill.

I joke because it’s the only thing I can do to punch back the tears that are forcing their way into my eyes and now down my cheeks.
I have picked the glue off my incision. Luckily it has healed enough to not do any damage. I am writing to occupy my hands. Words will be misspelled. tough.
I hear my son starting to fuss in the other room and I hold my breath. Please don;t wake up. Mommy can’t do it right now. My can’t hold you. not because i don’t want to but because i actually cannot without physical harm to myself. but i would. i would save you. you have saved me. it would be the least I could do. some how knowing that makes me feel better about my self. I exhale.
Noah has run out to fix my mistake. to help save me in the 12th hour like always. i do not always need saving. but we all need saving sometimes. right?

am i alone?

i hope not. the page is getting harder and harder to see. i’m sorry but all hope of good words has flown away with my breath. my shallow breath. i am trying so hard to breath deep because that is what you should do, right? He fussed again. i have got to breathe more quiet.
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I have typed this 5 times now. something about the pattern brings me calm. even if it is only for this moment. Shift, enter then pressing the number with my pointer finger on my left hand. careful. not with a fist. hand lay flat. touching each key like a piano key. the pattern is calm.

noah is home. i know he is not happy. no knight is ever happy after having to fight a battle. but it is done.

and the storm is passing

here i can be honest. here i can be me.

Last Day of Williamsburg?

Is what this post should be about, but it’s not.

I have the longest day back since having my port placed and it has really taken it out of me. In addition, I decided to earn some good wife points and sneaked off with Noah to the cinema tonight. I know, I know, we should go support Theatre! It’s our art! It’s our craft! And it’s because it is those things that when I have been at rehearsal for 7 hours that I would like to get away. I love what I do but even the best of us need to lock ourselves in a dark room, with a box of butter covered popcorn, an ICEE, and a loved one and watch a story with a happy ending. Well, at least that’s what Noah likes, and every now and then I am happy to oblige.

All that being said, I am going to leave you with this Beat Poem.

A green jeep. A bumper sticker on the right. In white. It reads
*Bongos*
I like Guns
Titties
and Jeeps
*Bongos*
In the back of the Jeep
*Bongos*
Rainbow hula hoops
*snap *snap *snap *snap

Day 2 of Williamsburg

The first part of the day was spent sleeping in! And it was wonderful. And very much needed. Today was the day I was going to treat Noah to his surprise! When I had been looking up all of the fun things we could do in Williamsburg this rose to the top! I knew he would love it and I knew I would have fun as well. As we programmed into our GPS our location the gig was up. He knew where we were headed but was not disappointed. “Starting route to The Cheese Shop” . His eyes lit up.
“Are you serious right now? There is an entire shop of cheese?”
Yes, yes there was. And we got to eat there too. And by cheese to go. And get samples. We spent the better part of an hour and a half there. But I was happy I could make him so happy.
The rest of the day was spent looking in shops we wished we could afford things in. I found this one dress I LOVED. I told Noah he needed to hurry up and find an event that was important enough for me to wear a dress like that. I guess that is just as much on me as it is on him. But if both of us get to working on it maybe it will happen sooner than later. Later that evening Noah had his heart set on playing trivia back at the resort. I was all for it because I am not half bad at trivia. Turned out to be St.Patrick’s Day Trivia and although we were not the worst, we were not the best. We were the best, however, at putting away some whisky. So we could both enjoy our selves, we went and purchased a bottle of Crown. All I will say is, said bottle of Crown did not see the sunrise. And neither did we. But here are somethings we did see that lovely day before that lovely evening.

 

 

Day 1 of our trip.

It started off about as rough as it could have. I was convinced that we were not meant to go and that it was not going to happen.

I went in to work, ready to face the day. Yoga pants, messy hair don’t care, boots, no make-up, ready to fight the day and get stuff done! My ever so amazing partner in crime was there and ready to fight with me. I ran down the list of things we were going to do and although both totally baffled as to why we were there we were going to make something of it! I ran out to use the restroom and as I crossed the threshold all of a sudden the room just started spinning. I hit the ground. I crawled into the bathroom before my students saw me. I pulled myself up to be sick and right before I did I dropped my phone in the toilet. The most modern day faux pas! I turned my head just in time. I managed to save my phone and I got sick the sink. I called my boss to ask her if as she was coming in if she could grab me a ginger ale at which point I think she told me to go home or at least I hope that’s what she said because to be honest with you, getting home was quite scary.
I now know what people mean when they say they are falling asleep at the wheel. I nodded off twice. I pulled over once and just rested my eyes. All I wanted was to get home. I was not even that tired but I just felt so sick. Finally I made it. Noah jumped up, frantic, thinking he had over slept. I reassured him, nope I was sick and sent home from work. He suggested sleeping for a few more hours and then lets check in again later before declaring the entire weekend a loss.
My husband is amazing. One thing he has taught me is that the day is not over til I say it is. I used to get very depressed when I would wake up and feel like I had slept the day away. After hearing me say this about a million times he asked me, how? How did I sleep the day away? The day was not over? I could still do something. Even if it’s just walking into the living room. That is still something. Between him teaching me that the day is not over, and me wanting to celebrate pretty much EVERYTHING, I am getting better about not throwing my days away.
Sure enough, a few hours later, dog in a kennel, baby with a sitter, and house locked up, we were off. First stop, chemo.
Yeah, well, some adventures are not as glamorous as others. This did give me time to create a play list. Our main goal for this day was to get there. We knew that we were going to be getting there late but we wanted to have all day Friday and Saturday to enjoy. As if I did not already have it – I think Noah gave me his heart with my amazing playlist! 240 min of AC/DC, KISS, The Temptations, Mumford and Sons, Indigo Girls, Sean Kingston, Starship, Beyonce, Journey, Van Morrison, Charlie Puth, Queen, Meghan Trainor, and so much more! You know your jealous!  If you really want the list, comment below or send me a message and I will send it to you. Noah should not be the only one. However, he is the only one who will have to listen to me sing every lyric to American Pie. I won’t put anyone else through that pain.
We have a rule on road trips. I am sure we will create more as we travel more, but we are young(ish), so the list is still developing. We are not allowed to eat at chain restaurants. For dinner we stopped at Brothers Pizza Italian Restaurant. The food was amazing! I wrote a little review on Tripadvisor (which I may start doing now, because this could be fun, right?) What it boils down to is normally I’m anti-Italian… WOW…OKAY ….LET ME FIX THAT. I mean, I feel like I can make good Italian food at home and I have so many great Italian friends who make me so many awesome Italian dishes that I am anti-Italian FOOD when we are on the road, not anti- Italian People. I love Italian people! This is where I need my friend Cole and his mom to come back me up here! I am going to get myself killed!
All jokes aside, the food was amazing! I am super picky about my pink sauce because growing up one of my good friends had the best. I had the pink sauce over Tortellini and it could rival Ms. Pat’s any day. The service was amazing. The staff was not just nice but they were genuine and fun. They asked about our trip and told us to come back by so that they could hear about it. They might not have meant a word, but for that night, we were sharing with friends and it was nice! Thank you Brother’s for a wonderful meal and friendly service.
We finally rolled into the Powhatan Resort at about 10:30. I would love to tell you that it was the greatest resort in the world, but it was fine. We checked in and they showed us where our room was. They were very nice and did the talk about how we should book a deal because if we do it now its “free”. But it was also 10:30 at night and I wanted to sleep. So we drove to our 2 bedroom condo that we would be staying in for 3 nights. All I could think is we could spend a night in each room if use the pull out one night.

But I’m to old for that mess, so Noah and I quickly unpacked and climbed into bed. Tomorrow would be a day of rest, shopping, and pretending to be Irish!

Still Here

I am still quite far gone and as my mother said – I should not be posting after so much medication. I am not sure if I care what she, or anyone thinks, medication or not. I did not start this so that I can make pretty words. If that was the point, I messed that up before I even started. I’m not sure I was ever taught pretty words.

Anyway, I still feel awful. I am either on medication and asleep. Or not on them and slightly lucid and in pain. I cannot turn my head or lift my arm above my head. I most definitely cannot hold my son. And he has no clue why. He just sees his mommy walking through kissing on him loving him and holding his hands to his side so that he won’t touch her. I pray that’s not his first memory. It is times like this that I will work hard to make sure that there are plenty of other amazing memories. Not spoil him. But spoil him with love. If that’s a thing. Then yes, my son will be spoiled in love.

Tomorrow I have to go into work. It will just be for an hour an a half so it really will not be long. My head is starting to be ready to go back to work. Now if I can just get my body there. I think I can handle this. I wish I had support at work. Let me rephrase that, I wish I had support at every aspect of my work. But that is neither here nor there.

What matters at the moment is that I am alive with my family and those I love. That is a win if there ever was one. Even if it costs me all the spoons for the rest of the month, I will hand them over. I am still here.

Surgery Day

Today was “put that Port-a-cath back into my chest” day. After months of being stuck multiple times a week in the arm, I finally have my port back. Through a lot of pain and stress I have something that will make the hospital loads more convenient.

I will go into more detail later about how it went, because tonight I am passing out and recovering.

tomorrow

I hope tomorrow will go down as one of the smallest days in my memory. I am so tired of giving it energy. I am done giving it my thoughts and time. I am mad at myself that I can think about nothing else right now.

I am going go try to go lose my self in books and words that are better than my own.

“I was once an orphan in Liverpool…”

Port Story

I want to write about my amazing vacation. I want to talk about how nice it was to get away with Noah. How we went to the Theatre, shopping, great restaurants, played trivia, drank like we were Irish, and other crazy fun adventures. But all I can think about is Tuesday. I KNOW this is not a major surgery, but there is just way to much surrounding this entire incident that my anxiety has me in a choke hold and will not let go.

Back story, for those who care or did not already know. November of last year I got sick with what I thought was a cold. I was running a low grade fever but was feeling horrible so we went ahead an headed into the ER. The doctors did not seem to think it was anything more than a cold but they went ahead and ran blood test anyway. Sure enough, my blood cultures came back positive that I had some sort of infection in my body that was in my blood and now running wild in my body. The doctors were pretty positive it was a false positive but they went ahead and put me for a few days while the other cultures came back.
As the weekend progressed, I started feeling better and had not run a fever in a few days so the doctors decided that even though they did not have confirmation from the final blood work that there was pretty much no way the test would come back positive so they sent me home. Before we even got home, we got a call from the doctor saying (roughly) Just kidding! Come back. Your test was positive and now we get to play find the infection.
In an effort to speed the process, the doctors in all of their wisdom, decided that they needed to remove my port because, although there was no positive test results from it, my port could be infected. If it was, there was a risk that it would spread quickly. This was already a small sign to me that my port was not the problem as we have been looking at the same results for a week and I had not been getting worse. I was also concerned that I would not have a way to get my meds and transfusions anymore. The doctor told me that they would set up a time for me to get a new port placed within the next 2 weeks. This made me feel a little better. The procedure, on the other hand, was horrible.
First try they worked for about 5 hours before they decided that the muscle tissue had wrapped itself around the port so much that they were not going to be able to do a basic sedation because they were going to have to cut muscle tissue. Try number two they knocked me out entirely. When I came to, I felt like there was a hole in my chest. There was. My port had been there for 8 years! That port was part of body. I felt like someone cut out part of my body. I know that people have parts of there body cut out frequently regarding cancer and I know my situation is not the same. I just could not believe the lack of acknowledgement that something that had been part of me for so long was gone. Maybe that was the way things were always done. I was just not prepared.
The day came when I was going to get my port placed. I had checked in to the Cancer Center to get a transfusion before the procedure when one of the nurses walked over to me fairly upset. She told me that Dr. Ellis was not comfortable with my platelet level to allow me to have the port placed. I had 2 choices. I could either keep the pic-line that dangled from my arm, that my son reached for to pull on and made it practically impossible to hold him, that my husband and I struggled to keep clean and sanitary, that I could not hide well enough to not be a distraction from all of my students not to mention that it was dangerous when ever we were to work on a lift or anything like that so it may have cost me my job. Or pull the pic and have an IV placed every time I come in for treatment or a transfusion.

I don’t know why, but this just broke me. I felt like I had made it though so much and now it seemed to mean nothing. I beat the odds with Eli and with my own body fighting itself and now this little simple thing, this little port placement, was going to be the thing I couldn’t rise above. Emotionally, I fell apart. Struggling with Depression and Anxiety is not helpful. Mainly because I never know what will trigger either. Don’t get me wrong, there are the basics on both ends. I KNOW some things will trigger a panic attack. Somethings that some people who are high anxiety cannot handle, I can deal with, no problem. Same for Depression. Every now and then, something like this comes along and I am crippled. There is not a blanket big enough, pillow fort thick enough, bath tub full enough, or storm loud enough to drown out the thoughts in my head.
All I can do is hope that in the next 48 hours, this will all be over. That these moments, in my history, will become a small blip on the radar as I always hope my health issues will. All I can do is hope that in my efforts to make this memory insignificant, I will endeavor to create meaningful ones.

 

This is me

I have come to appreciate my blog more and more. I appreciate those who read it, those who comment, and those who like it.
Mostly I have come to appreciate how honest I can be here. Here, I am me.

Not that I am not me every other time you see me. I am still me. I can’t change that without lots of surgery and lots of medications.(Or maybe lack of medications) It’s just that when we see people, even when we see them often, we only see glimpses of them. The meetings are windows, slides in a slide show, of that persons life. I know that I do not write my entire life here. But here, it is not a chance meeting. It is not some limited window with other factors weighing in. There are no other factors. I have no one to please. I write for me. And someday’s, I am the only person who ever sees it. And I am OK with that.

This is me.

***PS – On the last night of our Mini-Vacation and I will blog about all of it’s glory here soon! Promise!