When I First Noticed That Something was Wrong

The first time that I wasn’t feeling right, I was living on the island of Guam. It was before COVID, probably in 2019. I was at a volunteering event for the United Service Organizations. 

I had to tell the woman that I was working with that I needed to leave, which was very unusual for me, but I was just feeling very unwell. I couldn’t catch my breath and felt very weak. I thought this probably was the onset of a big anemic episode, because then, when I got home, I had what I like to call a “crime scene period” — a menstrual period with very large blood clots.

I couldn’t find a doctor who would take my insurance in Guam. I went back to the States to visit my husband and saw a doctor there. And that doctor said, “Oh, you know, it’s probably just perimenopause. You’re at that age where this can start coming on, so I wouldn’t take it too seriously.”

Then we moved to Germany, and one of the first times I was driving in Germany, I got in a car accident. 

They took me to the emergency room. I was totally fine after the accident. No issues. I walked away from it.

But the ER doctor came and said, “You know, we found something unusual in your abdominal area, so we’d like you to refer to our OB-GYN? Are you interested in doing that?” And I said, “Sure.”

The Moment Everything Changed

I don’t know when I heard the word ‘cancer.’ Well, nobody ever wants to hear that word, but my OB-GYN was really a positive person.

He went, “Listen, we’re going to schedule you for a full hysterectomy. We’re going to take a look around at the other organs in the area, see what’s going on. But if this is in the early stage, this could have a really good outcome for you. So, no need to worry right now about it. Even though I’m telling you ‘cancer,’ and nobody likes to hear that, let’s take each thing as it comes. Instead of trying to see into the future.”

I took it to heart. Generally, I felt okay; I wasn’t hurting and didn’t have a lot of pain at the time. 

I actually knew nothing about stage 4 endometrial cancer, let alone endometrial cancer. The education was from what my doctors were giving me here and from going to reputable cancer sites. So, not just using Doctor Google and picking the first article that came up, but from the Cleveland Clinic, Mayo Clinic, MD Anderson, and other leading cancer centers in the US. 

I was trying to back up what I needed to do and what the typical treatment would look like. 

How My Care Team Shifted When My Cancer Spread

As my disease was progressing, the doctor said, “Okay, it’s time to move on. We have some other teaching hospitals in the area.” 

So he moved me over to get most of my care through those hospitals and through my infusion clinic that I go to now. So he knew when it was time to release me as well. I felt like he was watching out for me and was trying to offer me the best choices that were available. 

When I broke my leg, I wasn’t under his care. I was under the care of the orthopedist at the same hospital where he worked. Although he always asked that when I come to that hospital that I stay in his ward. Because he knows my whole history, he can keep an eye out for me. 

Breaking my leg was pretty traumatic. I’m kind of a get-up-and-go type of person. I don’t want to be limited in what I can do. I was fighting with everything to get back to driving, get back to being more independent. 

I really liked my care team in the bigger facilities, like my radiological oncologist, and I liked that I actually ended up having to see a pulmonologist, because they discovered while I was healing from the femur break that I also had metastasis in my lung. 

Where I’m At in My Diagnosis

I had an episode during which I coughed up blood. What with that and my metastases, they said, “Let’s try something other than chemo.” They put me on immunotherapy for about six months.

That was miserable, pretty much because I was eating that soft food diet, kind of the same diet as when I was having the radiation therapy in my abdomen. But I would get sores in my mouth, and I couldn’t eat anything. I went from being 200 pounds down to 126 pounds. Then that stopped working because I had another episode.

They decided, “Okay, let’s go back with the traditional chemo, but we’re going to see you every week. It’ll be a lower dose.” That’s what I just finished in July. And then I had a few spot radiation treatments on my leg where it had broken on my knee and on my hip.

And then they found another potential area of concern in my hip. So they did a biopsy of that. It had to be sent to the Molecular Tumor Board. 

I haven’t heard back about what molecular markers might be available for other treatments for me. 

How I’m Managing my Mental Health

Unknowns are hard. I like to be in control. So that’s what my stage 4 endometrial cancer experience has been about. Sometimes you just have to release it. Release it and keep pressing. Like with the pain. Keep telling your doctors over and over about it. 

It’s also been important to stay connected with my friends and stay involved in the community. 

I should also add that maintaining my independence is also really important. Continuing to be able to get myself around if I want to go for a drive, although I’m doing that less and less, because my right leg is the one that has the cancer. So, it’s not great for driving sometimes. I just stay home if I need to stay home.