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 […]
Uterine cancer is also called endometrial or womb cancer. People don’t talk about it enough… perhaps because it mostly happens to older women? Perhaps because women are not sharing their grief with this diagnosis? But uterine cancer can also happen to younger, body positive, fearless women like me. […]
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)
I am a dumb workaholic who tries to do too much every day, hence this note to my future self. I’ll add to this and refer to this to try to keep myself from being an uncontrollable nut after I have my surgery. Wish me […]
My surgeon said no sex for six weeks. I made her qualify that by asking, “No penetrative sex, right?” She said, “Yes, nothing in your vagina.” Ok. I can deal with that.
Y’all know sex is an important part of my life. Affection is equally important in my relationship, so I feel like we can deal with both the short term and long term obstacles that are ahead.
I go a little stir crazy with waiting and speculating. To combat this I plan and prepare so I can be ready for the best possible outcome after surgery. I decided to make sure that all my favorite things, and the things that will support my sexual well being, are ready when I am. Here’s what’s in my kit:
I have my Warm ready. This is a beautiful sex toy warming system. Designed so thoughtfully, you just open one side, slide your toys in, and they are warmed to a very comfortable level. It’s perfect for those of us who have survived medical trauma in the pelvis (like me), the trauma of sexual assault, or anything that inhibits one’s ability to accept penetration with ease. Warm will make your toys soothing and will turn any toy or massage tool into a more sensual experience.
I also added this Inspire Silicone Dilator Set. These penetrative toys have a simple curve that aligns perfectly with the vaginal anatomy. They are smooth, silicone, and easy to clean. They are pliable and not rigid like the other hard plastic or glass dilation sets I have seen.
I tested these toys on my body this week so I can understand the state of my body before surgery and compare it to how well the toys work after surgery. I may also need to use them to expand my ability to receive penetration after surgery. Here’s a video I made of them last year, long before I knew I would need them myself.
I still need to define which lubes I will stock. With my extensive understanding of personal lubricants, now I need to look at them all with fresh eyes an consider what it is to use a lubricant once I have lost my cervix and natural wetness. I think I’ll do a separate, more comprehensive post on that topic.
I am still waiting for my surgery. In the meantime, I do art. I use these beautiful markers that have tips like paint brushes. I have two crochet projects. I catch up on TV show in chunks. Thankfully my husband has a real knack for […]