Symptoms Worsen

Fast forward to the summer of 2021, I started having heavier, more painful menstrual periods, which was unusual. I also had a sensation of fullness or bloating in my pelvis. What spurred me to see a doctor emergently was having severe urinary urgency.

I have a bit of a medical background so I’m running the different possible scenarios through my head. It never crossed my mind that it could be cancer. I assumed I had a fibroid. I’d been told years ago that I had a teeny tiny one so I assumed that it was related to that.

Oophorectomy (Ovary Removal Surgery)

I ended up getting rushed into surgery. At this point, cancer’s still not on my radar. I had a large cyst on my ovary, which was funny that it didn’t raise alarm bells for me. It didn’t even occur to me that it could be malignant. They ended up having to remove my ovary because the cyst was solid.

Everything came back benign. But the doctor said, “What do you want to do about this large fibroid in your uterus?” I had turned 38 at the time and wasn’t interested in having children so I told the doctor, “Let’s do a hysterectomy. I know fibroids can come back. I want to do a one-and-done.”

Secondary Oophorectomy

A couple of months later, the oncologist decided that she wanted to remove my remaining ovary because the tumor had estrogen receptors. When she went in, she found metastatic implants throughout my pelvis, which were confirmed to be sarcoma.

There were about six tiny nodules throughout my pelvis. They were attached to my peritoneum, bowel, and diaphragm, and they removed them all.

There was one small piece on my colon that they left behind. The surgeon, who was a gynecologic oncologist, told me that she was concerned about damaging my colon so she didn’t want to mess with it.

When I woke up from surgery, the fellow talked to me and said, “I’m so sorry.” I was still hazy coming out of anesthesia. She put her hand on my arm and said, “I’m so sorry, nobody deserves this.” I said, “What are you talking about?” I still was not fully with what was going on and she said, “We found more cancer in your pelvis so we’re going to have you start chemo in three weeks.”

At that point, I thought, “All right, we got this. I’m going to do chemo and it’s going to be what it is.” It turns out, I have leiomyosarcoma, a cancer of the smooth muscle, and it’s pretty much resistant to treatment.

Tumor Not Responding to Chemo

They started weighing the different options. “It’s starting to invade your bladder and your sigmoid colon. We need to see if we can go in and remove this. If this looks like a surgery that’s not going to cause a ton of damage to your insides, we want to get it done and get you back on another chemo.”

The MRI showed that there’s too much invasion into my internal organs that if they do a surgery, it’s not going to be straightforward. It’s going to be a long recovery. It’s going to delay getting on to another systemic therapy so they decided that they didn’t want to operate.

I was pretty freaked out. Two chemo regimens had already failed me and they wanted to put me on a third. I’m thinking, What are the chances of that doing anything at this point?

Radiation

I went through 25 fractions of radiation. I went every single day. It was the first time that anybody had given me any hope. She told me, “I’ve seen your type of tumor respond to radiation before.” She explained how they dosed it in a way that it was going to cover a margin around the tumor that would reduce the risk of it recurring by 50%. I was on cloud nine, thinking I finally figured out something that was going to work.

But even as a nurse, I didn’t realize how devastating radiation can be to your body. I tolerated it pretty well while I was going through it, but it damaged my bladder severely and my colon. I start having bowel issues and urinary incontinence. I thought, This is a means to an end.

I finished radiation the day before Thanksgiving 2022. I packed all my things, went back home, and spent the holidays with my family. That was the order from my doctors. “Go home, spend the holidays with your family, rest, recover from radiation, and we’re going to see you back at the beginning of January for your surgery. We’re going to remove this tumor.”

Follow-up Appointment with Oncologist

They decided that they were going to have me follow up with my medical oncologist before I flew back home to California. I moped around for a couple of days then I got in to see him.

He said, “You know what? It might still be inflamed from the radiation. It’s negligibly larger. I’m going to run this by the tumor board, but we’re going to send you home for six more weeks. We’re going to scan you again and then make a decision. If it is larger, we’re going to consider systemic therapy again. But if it’s not, then we’ll talk about what we can do.”

I had this sense of relief. I’m going to go back to living my life for six more weeks.

Surgery to Remove the Tumor

I went for my pre-op and saw the surgeon. I said, “Things are not moving.” He admitted me to the hospital right then and there, and I had surgery the next day.

The surgery was supposed to be on April 20th and it ended up happening earlier on April 12, 2023. I was brought in emergently. I had an almost 14-hour surgery.

There were five different surgeons involved. Dr. Tseng, a sarcoma oncologist at City of Hope, led the team, which included 1 or 2 urologists and a gynecologic surgeon. They had to do a diverting colostomy so there was a colorectal surgeon involved.

They ended up having to call on vascular surgery because the tumor was fused to the neurovascular bundle in the left side of my pelvis so the major artery in my pelvis was severed. They had to graft it and repair it because the tumor was fused to it. The tumor was stuck to my sigmoid colon. It had not grown into my colon, but it was smashing it so severely that nothing could pass through.

They had to remove a piece of my sigmoid colon and half of my bladder. The tumor was attached to my left distal ureter, which is the tube that goes from your kidney to your bladder, so they had to remove part of that.

Recovering from Surgery

I spent two days in the ICU and about 10 days total in the hospital. They wouldn’t let me go home to Northern California for another month because they wanted me to be close by. I stayed with a friend in the LA area who was a nurse and took great care of me. I have been fortunate to have so many good friends through all of this who have been willing to step up and help out.

I had a nephrostomy tube in my back to drain my kidney, a drain in my abdomen, and a catheter in my bladder. I had all these tubes coming out of me and they sent me home that way for about a month before they finally let me go home to Northern California.

Post-Surgery Scan

Fast forward to September, I come back for my first scans and there is a nodule in my lung. My doctor is still very optimistic. He said, “Look, it looks like that nodule has been there for a long time. I went back and looked at your old scans. It decided to grow a little bit and it was still less than a centimeter. It was tiny.”

He said, “We’re not going to mess around. We’re not going to wait and see what this turns into. I’m sending you to a thoracic surgeon and having that piece of your lung removed.”

Pulmonary Wedge Resection

In October, I had a pulmonary wedge resection. They removed the top part of my left lung with the tumor. It was confirmed to be metastatic sarcoma, but they got it all out. Turns out that’s the best-case scenario for me. If something pops up and it is operable, then that’s the plan because we know that I don’t respond to chemo.

Sharing My Cancer Story

Part of the reason why I like to be so open about what I’ve been going through is sarcoma is a rare cancer and a lot of people don’t know what it is. When they hear the word sarcoma, they don’t necessarily know that it’s cancer or what it affects. It makes up less than 1% of all diagnosed cancers and there are over 80 subtypes. There’s not a lot of research. There aren’t a lot of treatment options.

When you get diagnosed with cancer, your whole life changes. It’s not as simple as, “I’m going to do chemo or have this surgery and then I’m going to go on my merry way and put this behind me.” For most people, that’s not the case.

I’m getting ready to have an ileal conduit surgery, which is a urostomy so I’m going to have two ostomies. We decided that this was the quickest way to get my quality of life back so I could get back to traveling, going on girls’ trips, getting in a swimsuit, and not having to worry about urinary incontinence or having a catheter.

The very first time my care team said that a colostomy was a possibility, I did everything I could to mentally prepare myself. I went on Instagram and started following people who have colostomies, watching their day-to-day lives, how they dress, how they manage it, and how they maintain it. It helped me wrap my head around these women living these lives. They’re in swimsuits, wearing cute clothes, doing this and that, and nobody has to know that they have a colostomy. I can do this.

When I went in for the surgery, they still didn’t know if I would need it or not. It was going to be a surprise when I woke up. But when they told me, I wasn’t upset, not even a little bit. I said, “You guys did what you had to do to save my life and this is my new normal.”

Words of Advice

If you were to ever be diagnosed with sarcoma, the very first thing you need to do is search for a sarcoma center at a hospital with a cancer center. Sarcoma does not behave the same way as solid tumor cancers. It’s its own beast and requires somebody who knows exactly how it behaves and how to treat it.

I do wonder what if. What if I had been seeing a sarcoma specialist from the get-go? Not only should you see a sarcoma specialist right off the bat, but you should also get multiple opinions. I know that can seem daunting when you’re faced with a new diagnosis. You feel overwhelmed and don’t know what to do first.

I very much remember being in that situation where somebody like me, who is a nurse, who wants to understand everything about what’s going on, shut down. I wanted to curl up in a fetal position and let somebody else deal with it. It was too much for me to handle.

Honestly, if you’re comfortable, ask your doctor for medications that can help. It’s okay to not be able to deal with it all on your own. I take medication for anxiety when I go in for scans and usually, I have to start taking it a few days before.

This might be different for other people, but I can show up to surgery alone; it doesn’t scare me. I can go sit in a chemo chair alone; that’s fine. But when I’m going to have the doctor deliver my scan results, I need to have somebody close to me with me. I do my best to remind myself that whatever the result is, we will take the next steps and deal with it.