I am a very stoic individual. I don’t like to express my pain or vulnerabilities publically. I was at work when the doctor called. He did not ask me where I was or prepare me for the news. He just said hello, told me who […]
Tag: medical care
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 […]
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 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 […]
Yesterday I completed all the pre-surgical appointments. As soon as we got in the car I called the desk where they are to schedule my surgery. Got the voice mail. Again. Fuck.
They may be hating me over there, but I am over it. I left another message. This time I told them “I have achieved EVERY obsticle you have had to scheduling this surgery. The surgical urologist is ready to coordinate the times with my surgeon.” It’s so frustrating because she told me she was speaking with the surgeons to get it scheduled a week ago.
I hung up and felt instant frustration because I have done everything I could do. I have nothing left to do. I also had this feeling that I will spend the rest of my life waiting. Now I am waiting for surgery. I’m waiting for more pathology reports and cancer staging that will come immediately after surgery. After that, I will be waiting to heal. I am waiting to learn how my body will change. Will I need radiation? Chemo? I don’t know. I am waiting to find out. Eventually, I will see an oncologist every 3 months to monitor my body. If I am lucky I’ll spend the rest of my life seeking and waiting for NED (no evidence of disease) reports.
I have resigned to the fact that I can’t sit here waiting. I have to make the most of every day. I have to change my mindset. I am not sure what that means yet, but I’ll get there.
Tuesday was my hardest day since I was diagnosed. It started with a mammogram. I walked into the office and they told me this was a woman’s clinic and my husband could not be there. Yet there was a dude standing at the counter. I pointed to him and said, “What’s he doing here then?” They tried to tell me he was there for some other procedure. Needless to say– I kept my husband by my side.
Why would you tell any patient that the person who cares for them enough to come to an appointment with them was not allowed to be with them in the waiting room? Men get breast cancer, men get mammograms, men love women who need mammograms, and you can’t look at anyone and assume their gender. Their practice is antiquated. (My breasts scans looked great tho!)
Next was my pelvic CT scan with contrast. Contrast is so gross. I had drink fluid. More fluid was put in through an IV. The IV fluid is hardcore. When they initiate it your body turns hot, you feel like you are gonna pee (so weird!), and you get this metallic taste in your mouth. I had this done endlessly when I was a child.
Perhaps it’s more uncomfortable than painful for most people? For me, it’s very triggering. It’s as if I can taste a nightmare that I actually lived if that makes any sense? I taste the needles they put in all my veins, one by one until they all collapsed. I can feel the IVs they put in the tops of my feet after the exhausted the veins in my arms. I remember the bruises and residual pain from the needles. I remember the Pakistani doctor who grabbed my arm tightly, pinned it down and threatened to hit me because I was a noncompliant seven-year-old child. I remember the hospital elevators, halls, rooms, the spots on the ceiling tiles, the neon light bulbs, the patterns on the hospital gowns… all of it. All those memories exist in the taste of contrast fluid.
Through this, the medical pros that were administering the CT scan could see I was distressed. I am alone in the room, but they can watch me on the little close-up camera above the CT table.
I lay there. I am silent. The tears run down my cheeks, through my purple hair at my temples, and onto the pillow under my head. When I got up there were purple teardrops on the pillow.
“Are you doing ok?” they ask.
I can’t reconcile why I still cry over long gone pain and why these tears feel so humiliating. Is it the heat of the contrast fluid? That someone is doing things to my body against my will? Is it my lack of self-control? Is it that my body had betrayed me again with illness? I don’t know.
I have started to compile resources for myself through time, but I can’t help but notice how none of the medical professionals I have seen has had a single mental wellness conversation with me or a single resource to share. You would think any doctor office would have a printout, a pamphlet, or a phone number one can call for help through this process. Instead, they all have pharmaceutical pamphlets on injectable weight loss drugs and fertility. It’s fucking frightening.
I ended the day with more blood work and a medical clearance where they found I have been peeing blood. Who knew?
Not me. I think with all the discomfort and pain, I can’t even recognize where it’s coming from. So now I am on antibiotics, I am pretty sure I’ll get some of my energy back after I complete this round.
So what does today bring? My last cycle has arrived. I thought I might throw a party and celebrate this day, the last hurrah of my little uterus, but mostly I just feel unwell. 🙁 Grrrrrr…
I do have an appointment with a naturopathic doctor today to seek answers on how I can heal and care for myself after surgery. My sister delivered her well-researched list on actions I might take to deal with abrupt surgical menopause. I think I’ll work that list over this evening.
To my family and friends… you have no idea how much your letters, packages, tweets, and replys mean to me these days. I know I am not the best communicator/responder, but I am so thankful to not be alone through this. I love you.
(Photo: Me and my husband.)
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 […]
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 […]