I became a survivor in 1999 when I was diagnosed with endometrial stromal sarcoma.
I was actually a little relieved to get a cancer diagnosis. For about the year prior to being diagnosed, I had major symptoms, to the point that they got debilitating. I kept looking for doctors to treat me seriously and most doctors said, “You’re too young to have any major problems. It’s probably all in your head. So just relax. Don’t get stressed out. You’ll be fine.” I had originally been diagnosed with fibroids. The interesting thing about this cancer is when you do ultrasounds, it looks like fibroids, which are also a very common thing. That was one other reason I didn’t get treated very well because, “Fibroids aren’t life-threatening. You just have to learn how to deal with them.”
I had excessive bleeding. I’d always had heavy periods, but you don’t really know what’s normal. I had major pain where I couldn’t get out of bed for about three to four days, and I was doubled over. Everybody diagnosed that as constipation. The problem with gynecological cancers is a lot of the symptoms are pretty generic where they could be constipation, irritable bowel syndrome or various other things. I had lost so much blood that I couldn’t go up and down the stairs without getting light-headed. I couldn’t walk a couple of blocks without needing to sit down and take a break. On my 22nd birthday, I almost bled to death. Still, no doctors took me seriously. Finally, I got a doctor who was willing to actually talk about surgery.
My first two major pelvic surgeries were within a month of each other. It’s not fun to recover from one surgery knowing that I’m going to be right back here in another three weeks. I went back to do the hysterectomy. They took out the entire uterus and also one ovary.
Having the hysterectomy wasn’t a hard decision to make because it was a life or death decision. I never really regretted making that decision or even having to make that decision. I came from a family where out of three kids, my mom was the only one that did not adopt. So I’ve got adopted cousins, and I always felt like that was an option. In this day and age, there are also so many different ways of having kids. I was exposed to the variety of ways to acquire a child besides pregnancy or sperm-egg type thing. It would have been nice, maybe, to be pregnant but that’s a pretty short period of time, and I don’t really care that much. That didn’t make so much of a difference. I always told my friends, I’d be willing to be Aunt Kristi. Be very involved in a kid’s life, and I’ve been able to do that. I have a partner who has a kid, and we see him a couple of times a week. I’m able to be involved in his life on an ongoing and regular basis. I’m still not a parent. Eventually, that may be something I want to do is to adopt. I do have the support of my family for doing that. But I’m not financially ready to do that.
About six months after I moved and after my original surgeries, I was diagnosed with metastasis to the lung. We watched it for about six months. It was frustrating that it took so much time for him to finally get convinced that this was something. It brought me back to the whole before-diagnosis situation where the doctors were blowing me off. Once he decided it was important enough to do something about, he got a lung doctor on the phone, and he had surgery scheduled almost immediately. So he took it seriously.
It was about three more years until I was diagnosed with my metastasis back in the pelvis. The doctor’s theory on that was, “This is never going to go away. You are going to have to deal with a recurrence every couple of years for the rest of your life.” We tried a couple different hormones, medications, but surgery is going to be the answer. That’s all fine and dandy, but as I found out, surgeries have their own complications. This past February, I had my third major pelvic surgery. They call it de-bulking. They took out all the cancer they could find. Involved in that was a resection of a little tiny piece of the colon that a nodule had attached itself to. Unfortunately, they also found a nodule that had never shown up on a CT scan. It was also a brutal reminder that imaging tests are only so good.
I’ve seen a naturopath, and he’s put me on antioxidants. It’s general immune boosting. It scares me a little bit because my cancer is so rare that I wonder how much they really know about how this is interacting with my body. I’m trying acupuncture now. I’ve done Qigong, a Chinese healing meditation. It’s similar to a lot of martial arts. The difference is that it’s focused on healing the body instead of defending from somebody else. Just the eating plants, it’s very different. It makes me feel a lot better. It makes me feel a lot more grounded. If anything, it makes me feel like I can deal with stresses without getting too overwhelmed.
When I was in the hospital one time, I had a couple of friends visiting me. One friend came up to me, and she put her hand on my leg or arm. It was like, “Wow. Nobody’s touched me this entire time I’ve been in the hospital.” Besides to take blood or my pulse, no friend of mine, no family member has really done anything to express their concern for me or to make that physical connection. It shocked me. She even tried to bend over the railings of the bed to give me a hug. That attempt of awkwardness made a really big difference to me. That’s one thing that’s big. When you’re in the hospital, when you’re having chemotherapy, when you don’t look the same, when you’re recoiling a little bit from other people, or when you’re in bed and you can’t move. It made a big difference to me to have somebody come over and try to make that connection, doing whatever she possibly could to make that connection. My family members couldn’t quite do it.
I lost a lot of friends when I was diagnosed with cancer. I’ve come to terms with a lot of that. A lot of them are healthy people. They’re at their point of having babies, trying different careers, and spending 50, 60 hours a week at work, which I don’t want to do. I can’t do. Most of my friends now, I met since I’ve had cancer, so they’ve known that about me. I may not see them all year, but they’ll come visit me at the hospital. Most of the people that I hang out with now are other cancer survivors. I found a partner who is a little bit older than me but also has cancer, because I almost couldn’t conceive of being in an intimate relationship with somebody who didn’t have an understanding of the experience. I hang out with a lot of people who are old enough to be my parents and grandparents. With Team Survivor or with some of the other cancer organizations, they’ve had cancer. We may not necessarily talk about cancer, but they have that understanding. I have a hard time identifying with my peers who haven’t necessarily had a life-changing experience, whether it’s cancer, a different disease, or an accident.
Now that I’m looking for work, I’ve definitely noticed discrimination. “Why have you taken a year off of work?” How do you answer that question truthfully and not get into stuff? I’m young. I look healthy, which I think is really good in some ways. It means I can get a job, and they can’t look at me and think that something’s wrong. On the other hand, I need benefits. I can’t go for a job that doesn’t offer health insurance, vacation and sick leave time, and family medical benefits. I’m at a point where I don’t have a whole lot of skills. A lot of the jobs that I would normally go for because I’m young aren’t an option because I can’t go without that support from the company. I’m in a weird position because I’m pretty darn sure I’m going to need surgery in the next three years. This is my time to get established in a large company, where I can get family medical leave and health insurance benefits. I’m having a really hard time because I don’t have the certificates. I don’t have a specific enough degree to get into some of these companies. Anything that requires that you send your email or your resume on email, there’s no way they could scan my resume and it would come up. It just doesn’t fit their specific model.
Live Strong means be all that you can be. I Live Strong by exercising on a regular basis. By meditating, taking care of myself, relaxation, eating well, and in taking my medication when I’m supposed to. I Live Strong in a sense that I feel good. I look good. I’m not living, breathing cancer all the time. I do take breaks from that world, but I still take a lot of strength from the people that I meet, the connections I make, the resources that are available to me.
My name is Kristi Schurman, and I’ve been living with endometrial stromal sarcoma for five years.