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 little earlier and better care for their body.

My signs:

• 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.

I can’t tell you much about Jo. She was a Holocaust survivor, having been freed from Auschwitz concentration camp in her early teens. She couch-surfed through Europe, hopped a boat to America, and eventually landed with her extended family in New Jersey.

When I met her she was in her 80s. She was retired and had developed a passion for photography. She wanted to take my picture. I let her.

We developed a friendship. We would talk about art, drink tea, and find good food together. Every once in a while I would see a little bit of her pain as a survivor. Having come from a rough place myself, I appreciated it when she would be vulnerable enough to allow me to see it.

One day I arrived at her house to find she was wearing her camera strap with her wrist tucked in, like a sling. I asked her why.

She explained that she was suffering from a shoulder injury.

I asked her if she had seen a doctor.

She had.

She explained that they wanted to do surgery but she was not going to do it. She did not want to spend the estimated 5 days in the hospital.

I totally understood. When you have experienced institutional trauma as she had, being confined and not having control of your moments and days can be unbearable. It’s panic-inducing.

By this point in my life, I had been trained as a patient advocate. I had been spending days and nights in the emergency room with domestic violence and sexual assault survivors. It was my job to sit with a patient, help them understand their medical and legal rights. It was my job to give back some of the power that had stripped away from them by trauma.

In an effort to encourage Jo to care for herself I offered to go with her to the hospital. I offered to sit with her, by her bed, 24 hours a day, for all the days she may need to stay. She declined my offer.
I respected that her body belonged to her. I reinforced that fact that if she ever changed her mind, I would be there. I was ready to care for her.

When I left Jo’s home that day I had this overwhelming sense that if I could not care for this survivor, then perhaps I should learn from her. I made a promise to myself that if ever I was in need of medical care I would not allow my past trauma and pain inhibit me from seeking that care and submitting to the treatment that would give me the highest quality of life. As a form of revenge against the world and all the pain it has caused Jo, I would work to only take better care of my body.

Today I give thanks to Jo. She taught me how to be stronger and how to take better care of myself. When my body began to bleed and bruise it was my memories of Jo that made it possible for me to push past the tears and fear and achieve my cancer diagnosis. I will draw on this strength as I move through treatment.