When I first saw my doctor, she agreed that it was not like me to have low energy, especially at my age and with my health history, so we ran some blood work to see if it was my thyroid or if we would uncover anything else.

Unfortunately, everything came back normal, so we didn’t get answers to what was causing the fatigue. She said maybe it was stress or I was exhausted from work. She wanted to do blood work every couple of months and keep checking in to see how my energy levels were.

A couple of months later, I started getting notifications on my smartwatch letting me know that my resting heart rate was over 100 bpm, which would happen when I was sitting down and relaxed. I thought it was a glitch, but after a few times of that happening, I thought it was something I needed to take back to the doctor to see what was going on. They did a quick EKG, which came back fine, but she didn’t want me to continue experiencing elevated resting heart rates, so she put me on a beta blocker. We redid the blood work and everything came back normal again.

A couple of months later, I experienced heartburn. I’ve never had heartburn, so I thought, “What is this burning sensation? Why is it so uncomfortable?” From the moment I got it, it happened every time I ate, no matter what I ate.

I went back to the same clinic but saw a different doctor because she had availability sooner. She told me, “It’s probably your age. You’re getting older, so maybe you can’t handle acidic foods anymore.” I told her I’ve never had it before and it’s happening constantly, regardless of what I eat. She said, “Let’s start this new medication and try to cut back on acidic foods.” I started the medication, but it didn’t do anything.

Then I started having difficulty swallowing. I would eat something and it felt like the food would get stuck halfway and I couldn’t breathe. When I would try to drink something, it would feel like I was drowning. I thought it was a one-off situation, but when it happened again, I said I wasn’t going to wait for a third time.

I booked the first appointment available. Again, my primary care doctor wasn’t available, but the other doctor at the clinic was and she told me, “We know that everything’s been normal. I don’t see any issues.” I told her I wanted to redo my blood work, but she was hesitant.

She started going through my chart, saw my weight loss, and said, “Oh, wow, you did lose a lot of weight in a short period. I don’t like what you’re saying about the difficulty swallowing, so let’s get you to a specialist.” I redid my blood work that day.

Biopsy

When I woke up from the procedure, the person who performed it told me, “We found one polyp in your colon. We removed it and it doesn’t look concerning, but you had a lot of inflammation in an area that we don’t typically see. It’s where your esophagus meets your stomach and the inflammation is pretty bad. I’m going to take a biopsy and send it off.” I asked, “Is that why I’ve been having difficulty swallowing?” He said it’s definitely why. I asked, “Will that also explain why I lost so much weight within a short period?” He said it could be.

Then he took a deep breath and said, “Does cancer run in your family?” I wondered where this was coming from. I had just woken up from the procedures, so I was trying to think and remembered two distant relatives but nothing stomach-related. He said, “Okay. Well, like I said, we’re going to send it off. I’ll call you back with the results in a couple of days.”

I didn’t hear anything else said. I finally came back to what was going on when the person on the phone asked, “Do you have any questions?” I had a million questions, but I didn’t even know where to begin. The only thing I could think to ask was, “What’s next? Where do we go from here?”

He said, “Pretty hopeful that we caught this early. I know you’re scared, but you’re young and healthy. We’re going to take care of this and you’ll be okay. We’re going to do another scan higher up because we weren’t expecting to see that inflammation so high up. From there, we will get you with the oncology team and they will go from there.”

In addition, he told me that I had the bacteria H. pylori, which caused my gastric cancer. It looks like I got it when I was a child and because I never had symptoms, it went untreated and turned into gastric cancer. He said, “We need to clear that up first. You need to do the scan and then you can start treatment.”

After that, it was a little frustrating because I had another scan and the doctor said the scan looked good. He was going to call in my prescription and I said, “When do I talk with the oncology team?” He said they should be calling me but gave me the number. After that weekend, I went ahead and called them.

Finding Online Support Groups

Before I got to those first appointments, I was searching for support. I knew I had cancer, but I didn’t know how to feel and I didn’t want to get lost in the emotions. I wanted to try to connect, especially since one of my friends told me her mom benefited from support groups.

I found some support groups, but I wasn’t getting what I needed. There were so many members and so many people talking about so many different types of cancers that it felt so overwhelming.

I found Stomach Cancer Sisters and it was specifically for women who have had or have stomach cancer. I joined and was immediately welcomed. I was asked about what type of stomach cancer I had and I had no idea. Someone asked if I could share my reports with her and so I did, and she told me we had the same type of cancer. She told me what was going to happen, including having to remove the entire stomach. Nobody’s told me this, but that empowered me so much that I felt ready to go to my appointments.

Laparoscopy Results

I got a call from my surgical oncologist and he said, “Unfortunately, during the laparoscopy, I took some biopsies and they came back as cancerous. It has spread to your peritoneum. It’s stage 4 stomach cancer and, at this point, surgery is off the table.” That rocked my world because I knew that removing the stomach was the only cure for this type of cancer.

He said, “We’re going to pivot you back to your oncologist and you will work with her. You will do chemo and that’s it.” I asked him how I could get surgery back on the table. He said, “It’s not common for us to do that with stage 4 patients, but, in four months, we will check in with you. We could do a procedure called HIPEC (hyperthermic intraperitoneal chemotherapy) where we apply chemo directly to your stomach. But at that point, I want you to do four more months of chemo, so it depends on your progress. We will check in.”

Joining a Clinical Trial

In October, my oncologist told me that there was a new trial available specific to the type of cancer I had (stage 4 stomach cancer) and the spread I had. She said, “With this, you would receive chemo directly to your peritoneum and have surgery to remove your stomach. They’re hoping to find a cure for the spread that you have.” It’s exactly what I wanted and needed so I asked her to sign me up. She said, “Okay. We have to do another scan to make sure there are no signs of spreading anywhere else because that would disqualify you.”

The scan showed that the cyst on my ovary got larger and she said, “Now we’re concerned. We need to make sure that that’s not cancerous. We need to do an ultrasound.” We did the ultrasound and after that, I met with my surgical oncologist.

During that appointment, he told me that the ultrasound came back as non-definitive, so they weren’t able to tell if it was cancerous or not, but I was okay to go forward with the trial.

I had a procedure to place the port in my abdomen and a few weeks after, I began the chemo to my peritoneum. I received three rounds of chemo. Everything was good. Then we started preparing for surgery.

The day before surgery, I met with her again and she told me, “What are we doing?” I said, “We’re removing the ovaries.” I went in to have my surgery, which was a 7- to 8-hour procedure. They removed my stomach and attached my intestines to my esophagus. They also removed my ovaries.

I was supposed to be in the hospital for a week, but I was very determined to not have any complications. I knew the surgery had a tendency to have complications and it’s not 100% in my control, but I wanted to do everything that they wanted me to do to help with that.

They wanted me to walk around, so I walked around. They wanted to make sure that I was sitting up most of the day, so I sat up and hardly laid down. I ate the protein that they asked me to eat. I did everything that they asked me to do. Because of that and the way everything was looking, I was able to leave the hospital in four days versus a week.

I was shocked. I didn’t know what to think and how to feel. He told me, “We still have you on the schedule to have three more rounds of chemo to your peritoneum, but I’m concerned with the results of the pathology. I don’t know if we can wait until you finish that to put you back on systemic chemo or if we need to jump right into systemic chemo to address anything in your body versus focusing on the peritoneum.”

We brought back in my oncologist and she shared that it’d be best to go ahead and finish the trial. After that, maybe we should move to observation.

That brings me to the present. I’m waiting it out. I have another scan to review what’s going on and if there’s anything else concerning anywhere.

Importance of Self-Advocacy

Focus on your why. Why do you want answers? Why is it important? For me, it’s my family. I want to be here for my family. I have a son and want to be there for him and see him grow up. I want to be the cool, tatted grandma and witness my child grow up and be a husband and a father. I want to see all his big life moments and be there to support him. I want to spend the rest of my life with my spouse. We have so much more time and so many more memories to make.

Words of Advice

Self-advocacy is so vital. You have to make sure that you’re advocating for yourself at each appointment. You know your body. Unfortunately, doctors get a lot of patients and they’re very busy. It’s not all on them. Sometimes, we have to reiterate, “This symptom is concerning because of this. This is what I need from you.” We forget that we have that power.

We go into the doctor’s office wanting them to give us answers, but they don’t have all the information and that’s not their fault. Sometimes, we don’t have all the information but make sure that we are pushing for more.

If they can’t do something for you, then get a second opinion or ask them to put you in touch with someone who can do that for you. Advocating for yourself is the most important thing when it comes to your health to make sure that you are getting the right treatment that’s specific to you and your needs.