This is my last post before surgery. During surgery, they will be able to stage my cancer and tell us if I need more treatment, like radiation or chemo. But finally, on Friday my treatment will begin. My nerves still hum… it’s been like that […]
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. For example, I have a genetic syndrome. I got this shit younger than most.
Below are the signs that got me into the doctor’s office. Some of them I have had for a long time and did not know they were signs of cancer. (It’s a little like the frog in a pot of hot water analogy. I am the frog. Cancer is the HOT water. I was not dropped into the hot water. I was gently set in a nice pot of warm water. Life slowly turned the heat up on me. I stayed in the pot, blissfully unaware until it was suddenly it was painfully obvious that I am in a pot of hot water!)
I’d love it if I could help a few people get diagnosed a littler earlier and better care for their body.
- Watery blood at the end of my cycle. For me, this started a few years ago. I figured it was because I was perimenopausal. I had no clue this was a sign of an issue.
- A dramatic increase in monthly bleeding, in both the amount of blood and number of days. I had always had a rather light cycle so this one was obvious to me. This started five months ago. I was on the road for work. I was bleeding a lot. I knew I was becoming anemic from the blood loss. I spoke with my older sister to see if she could give me any insight into the possibility of this being a part of perimenopause. I did the self-remedy of taking iron.
- Bruising. This one freaked me out. I developed a large black bruise on my tummy. I knew I had not been injured so that was the last sign I could not ignore. I had other little weird bruises on my body too, like on the top of my wrist.
For women who are past menopause, I understand the number one sign of uterine cancer is that they begin to bleed, long after they had originally stopped having their monthly cycle.
I also learned doctors have a good reason to always ask you about family history when it comes to cancer. (Duh! I just never thought to ask why they always ask.)
If you have had close family members who had cancer (especially when they were young) you might want to request a genetic screening. This way you have some understanding of your risks and can be more proactive in your wellness. If you come up positive it means doctors will do actual cancer screenings on your body at a younger age and perhaps with more frequency.
My family history is a little mysterious. My mom died young. Most of the rest of my family is either scattered to the winds or so horribly repressed that they like to pretend they don’t have a body, much less illness, much less share their experience around illness.
My siblings are the exception. We talk. As much as it sucked to tell them there is a genetic issue in our bloodline, it also felt good to give them the information they may need to care for themselves.
So don’t be an ass. Live long and do good. Listen to your body. Talk with your family. Ask your doctor questions. Get screenings when possible.
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 […]
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 […]
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 […]