I left Show World on a high note. I left before I was totally burned out. My soul intact. Sure I had my rough days at the peepshows: an attempted assault here or there or people trying to coerce me in various ways. But I […]
This is a timeline of my healing process. I’m creating it to remind myself how far I have come and to help other people who experience a robotic, radical hysterectomy to know what they might expect. Doctor’s say it should be six weeks until I am fully […]
Quick post as I have limited energy. Forgive my typos, I’ll try to clean them up once I have more wits.
On surgery day I went from being emotionally distressed to terror as they started popping the IV in my arm, to absolute physical trauma. I came to in the recovery room with horrible pain my shoulder. I was begging someone to hold my hand. The nurser told me she was too busy. There were lots of patients, each nurse had two patients to attend to. They stood in front of these mobile laptop desks.
She told me the pain in my shoulder was due to the gas they fill the body cavity with as the robotics unit moves through the body. The gas had risen to my shoulder. This is the should that I had rotator cuff surgery on when I was 17 years old. The pain felt like someone was tearing my limb apart. It was excruciating.
At some point the let my husband in and he held my hand and fed me ice chips for what I think was hours. I was in and out and confused. They moved me to a room that night. It was nice. A private room. My husband went to take his mom back to our home and to get what he needed to stay the night.
The pain in my abdomen started to become apparent. The pain in my shoulder started to decline. In the morning I found my husband cat napping in a chair, I had a catheter, an IV in one hand, and another in my elbow. I had some serious problems with pain management. There was some amazing staff at this hospital, but I had some serious issues with the morning staff. I did everything I had to do to get released as quickly as possible.
The drive home was painful. Every tiny bump in the road hurt. Walking to my door and up the flight of stairs was really hard. But home is the best place to heal.
I think robotic surgery is not less painful at the beginning, but healing seems to come faster. Each day I fell pretty miserable but there are also little wins every day. I started walking with more ease. I can get out of a chair on my own, I have been eating ok. Every day a little more progress. I stopped taking the pain pills (except for Tylenol and Advil) a few days ago. Yesterday I made my own breakfast.
One big problem this is that cannot get comfortable in any position. It’s hard to sleep. And then two nights ago… my shoulder starts with the excruciating pain again. I got up in the morning and the pain subsided. Then again last night at the end of the evening, the shoulder pain again. I woke up at some point and realized my should is dislocating when I lay on my back. It’s dislocating when I use my arms to pick myself up off the couch. It’s threatening to dislocate when I pick up a coffee cup. I am right back to where I was before I had my rotator cuff surgery. Fuck. The gas they used during surgery destroyed my rotator cuff.
So in the wee hours of the morning, I taught my husband how to relocate my shoulder. Tomorrow I’ll seek a specialist to see if we can repair this damage with physical therapy. I must be the first person to go in to have cancer removed from my abdomen and come out with a damaged shoulder. FML
Today I made a blog post. Tomorrow my goal is to get out of pajamas and put on real clothes maybe. (My goals right now are super small.)
Today is Thanksgiving. It’s a good day to make a list of everything I am thankful for. I’ll go work on the long list.
Happy Thanksgiving my friends.
Surgery happens this Friday. Now there is a low hum of nervousness that constantly resonates out of my chest. It started yesterday and is so real that I can damn near touch it and see it. I wish I could make it stop. The thing that I have been […]
Still managing to keep my head in a good place. I have these passing panicked thoughts about surgery and incisions and losing part of my body to cancer. I am getting pretty good at setting them aside.
The mind is a funny thing, you can play honest games with it and get what you need. It helped to create some happy places in the future rather than looking back at happy times and places. For some reason, I felt more pain looking back– like I was mourning for those good times and places. On the contrary, looking forward gives me joy and energy. Whatever works.
I have also been thinking about how this cancer is hereditary. It’s been existing in my family but no one knew. I have heard of people doing genetic testing but I never understood why. I guess poor people don’t do those things? At least not the poverty-based family I come from. The good thing is that at least my siblings and their children have a chance to test early and be prepared to care for themselves.
When I sent my siblings a document they can take to their doctor my sister asked if I learned any other interesting facts from my pathology, like “if I’m part Neanderthal or anything?”
I told her I was 100% fairy.
My brother then said, “Monkey fairy. You’re a hybrid. Or a mutant.”
I agreed that I am, “I am 100% two things.”
So you can see… they take this whole thing very seriously!
Also, did you know there is a national registry for people with cancer? I only found out when my doctor uploaded a document to my online charts stating that I had been added. They use it to map environmental cancer outbreaks and gain statistical information. It’s kind of awesome and creepy at the same time.
Surgery is scheduled for November 17th but could still happen sooner if there is an opening. I go to the hospital tomorrow for pre-surgical testing. (More needles! Bluck!)
I am trying to take it one day at a time. Now I wait. Then I heal. We will all see what comes after that. In the meantime I am eating well, doing yoga and anything else I can to be as strong as possible when I go under.
Having family here and getting love from friends have been a good distraction. Even if I am a bit of a hermit, y’all still find ways to love me. You are amazing. I am so thankful for the people I have in my life.
(Photo: Words written on a wall saying “Its moving kind of slow.” Lower East Side, NYC. Circa 2010.)
I’m making a list… My brother’s wedding Getting new tattoos with my husband when we get our no evidence of disease report Going back to martial arts Learning how to do aerial yoga Plotting my spring garden (I’m planting/learning to grow more food next year!) New […]
I’m doing a little better. I am finding that more peaceful spot inside me where have given in to the fact that life will never be what it was. Things are different now. If I want all the good things life has to offer I must accept the cost. The cost now is that I invite healing professionals into my life. I allow them to touch me. I trust my body, I trust my mind, and I trust them.
Trusting others and allowing them to touch me is no small thing. I have something of a reactive attachment disorder that stems from the neglect and abuse I endured as a child. I was physically abused, I suffered immense medical trauma, I was not touched in positive ways, and I was passed around to different caregivers.
This means that as I grew up I had to learn how to allow people to touch me. I had to let go of my impulse to injure people who tried to touch me. There are times when my reactions to touch saved my life and there are times today when I still need to talk myself down from what may look to others like irrational behavior.
I don’t think of my natural reactions as a disorder tho. It may feel that way to others, but that just means they have not taken the time to get to know me. Generally, I sum this up by saying I am both instinctually gifted and a little feral.
So yes, I am now looking at healing professionals as teammates and learning to trust them. (Writing this here with mixed intentions, to share with you but also to remind my inner feral self! Ha!)
It has also taken some time to figure how to address the fight inside my body. I have often in my life used the power of my mind to visualize an illness. I have used my mind to picture the bacteria or pain and talk my body through how to release it and fight it.
Cancer has not been that easy. The mutated cells are also my cells. They are made of me. There are no external invading properties. The flaw exists in my genes. I was having a hard time hating myself or part of me. (Which is kind of awesome, in its own way.)
Then I got a call from the doctor. The CT scan shows there is something on my liver. They don’t know if it is cancer yet. If it is, that’s devastating. It means cancer breached my uterus. If it’s nothing, then no big deal.
A sign that there may be a breach pissed me off. It’s like the mutated cells are bullies, coming after all the healthy cells and organs. And that made it possible for me to visualize this fight. The mutated cells are bullies.
Couple that with having cleared up the mean UTI I was suffering from and the gloves are on. I am fighting bullies, which a very natural thing to do in real life! I don’t hate bullies, I hate their behavior. I want to isolate and remove them from the situation. That is my attitude toward my bully cells.
Ok, enough of my inner blabber.
In other news, I had an MRI yesterday so they could get a good look at my liver. I learned something interesting… A CT scan with IV contrast takes two minutes and destroys my heart. An MRI with IV contrast where I’m stuck in this tightly enclosed tin can for 30 minutes is 1000 times easier for me. The contrast fluid for an MRI does not trigger me. As a crackpot scientist, I found this to be fascinating!
My mother in law is staying with us. She is taking some of the daily tasks off our hands and enduring the emotional labor with us. What a saint. I love her so much. Yesterday she sat at the kitchen table with me and we went over all of the appointments, paperwork, and bureaucratic bullshit together.
We have my medical appointments, insurance junk, my husband has a bunch of care and benefits stuff we are working through at the VA, and we have to get our car registered in NY since we moved here a few months ago. Couple that with my work schedule and I have been swimming. Thank goodness she arrived.
(Photo: Street art of a cat. San Francisco, circa 2007)