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Survivor Interview – Eden S.

Eden is a rectal cancer survivor. She talks about preventing infertility before radiation treatment, how she deals with fecal incontinence, and life insurance.

A young woman with short hair wearing a black and teal shirt is interviewed against a white background.

I became a cancer survivor on November 12, 1997 when I was diagnosed with rectal cancer.

I was misdiagnosed from age 18 to 26. I had been complaining of abdominal cramping, constipation, diarrhea and weight fluctuation. The doctors told me all sorts of different things: lactose intolerance, inflammatory bowel disease, irritable bowel syndrome, Crohn’s, colitis. I was finally diagnosed via a colonoscopy. I had surgery three weeks later to remove a tumor that was the size of an orange in my rectum. If you can imagine sitting on an orange, I don’t know how I did it. I think I just had a high threshold for pain. I had chemotherapy for six months and radiation therapy for six weeks during those six months of chemo. I finished treatment June 5, 1998. Everything happened really fast.

The surgery that I had was the lowest attachment that my surgeon had ever done. To be a little bit graphic here, frequently when a patient has rectal cancer, they remove your entire rectum. If they have to remove the anal sphincter muscles as well, there is nothing to stop anything from coming through, so you automatically get an ostomy. I was very fortunate in that he was able to preserve the anal sphincter muscles. Because I’m a woman, the pelvis area is a little bit wider, and they can pull down a little bit more of the colon to attach it. I was very, very fortunate. Although I have tons of patients now who live with ostomy bags, their quality of life is so much better than it was before. So it’s all relative.

When I went in for the surgery, they weren’t even sure if it was cancer. If it was, then I was going to need radiation, and the radiation would kill my ovaries. So, once they determined in the operating room that it was cancer, they called in an OB/GYN surgeon who relocated my ovaries so that they were outside of the field of radiation. My ovaries are actually attached to my kidneys. I am still producing eggs and will hopefully have children one day through in vitro fertilization. There are plenty of women out there who go through things from A to Z to try and figure out why they can’t get pregnant. I don’t have to figure it out. I know what I need to do. I try and put a positive spin on it a little bit in that respect.

Fecal incontinence was something that I dealt with before I was diagnosed. I continued to deal with it after I had surgery as well, while my bowels were trying to figure out how they were supposed to work with their new plumbing system. I would sometimes barely make it to the bathroom. Even now, if I have to have a bowel movement, there’s not much time for me to wait. There were times when I didn’t make it to the bathroom and that was just something that I had to deal with. You just clean up, move on and go to your next daily activity. It isn’t something that I have to continue to deal with now. Some colorectal cancer survivors do, and you just learn to live with it. You can wear adult diapers, and there are medications you can take to prevent things like that from happening.

I’ve changed my diet because of the type of cancer I had, but not really because of how it affects my digestive system or my bowel movements. I eat a high-fiber, low-fat diet. Especially right after my surgery, I ate a lot of meat and potatoes. For six months, it was no vegetables, no fruits, because that would really cause an uproar. When I did have a craving for fruits and vegetables, I ate baby food. It cured that craving, even though it didn’t taste great, and allowed me to not have to run to the bathroom.

My wedding was scheduled for September 6, 1998, three months after I finished treatment. The doctor said to keep planning the wedding. My fiancé and I had planned to move to Arizona right after we got married, but I just remember saying, “I don’t want to be on the other coast from my doctors.” I remember them telling me that once I hit the five-year cancer-free mark, I’m pretty much out of the woods. I was using that gauge as, I’m not leaving my doctors for five years.

I did end up getting married, and I ended up getting divorced. I think it was somewhat related to me having cancer. My ex-husband traveled a lot during my treatment and didn’t really experience the journey through cancer the way I did. It was a life-changing experience. I think it was hard for him to understand where I was coming from after I finished treatment.

When I was going through treatment, I did not feel at all sexually attractive. I did not want to be sexually active. I didn’t want my fiancé touching me, because I felt disgusting. I was nauseous and not myself. Also, my medical oncologist had said that, for a certain amount of time after receiving chemotherapy, it probably was not a good idea to be sexually active because my bodily fluids would have some element of toxic chemotherapy in it. So that makes you feel like, ooh, yuck. It probably took three years for me not to feel icky and gross. There were some side things involved there. My marriage was not going well, so clearly, I wasn’t feeling sexually interested in him. But I think that might have been more a result of the relationship than how I felt about myself.

Fortunately, I had a really good health insurance plan. I did have some problems with mammograms. My mother had breast cancer and there is a known genetic link between breast cancer and colon cancer, so I started getting mammograms in my late twenties. The insurance company rejected it, so I had to get a letter from my doctor saying that the test was medically necessary. The insurance company will cover stuff most of the time as long as you get your doctor to write that letter. My biggest advice is, “Don’t ever pay a bill unless your insurance company has told you that you should pay it.” Match up all of your Explanation of Benefits from the insurance company with the bills.

As far as life insurance goes, I think you have to be seven years cancer-free before you can actually get it, because you have to prove medical insurability. I’ve been fortunate that my life insurance company has offered a couple of plans where I didn’t have to prove medical insurability, so I jumped on those. Even though I’m single and I don’t have any dependents, I felt I better take them while I can. If you’re trying to get life insurance, ask your agent when they might be offering an option where you don’t have to prove medical insurability. Try and get it before they realize you’ve been diagnosed with cancer.

I have a lot of long-term side effects; most are probably from the chemotherapy. My sense of smell and taste are totally off. When I cook food, nobody can eat it but me, because it’s so spicy. There is steam coming out of their ears! I definitely have chemo brain, both long-term and short-term memory loss. My white blood count is still really low. They haven’t figured out why–it just never went back up. I have to be really careful if I cut myself to put a Band-Aid on it. I have to wash my hands really well, and I don’t put my hands in my eyes or mouth.

Urinary incontinence is something that I deal with now. I think it’s because they had to move a few things around during the surgery. Sometimes when I sneeze or cough, it’s like, whoops! It’s not a chronic thing and it’s not something that I have to wear any provisions for at this point. I just have to be careful.

I get follow-up tests: colonoscopies, chest X-rays, MRIs, PET scans and CAT scans. The biggest fear is that the cancer will come back where I had the radiation therapy. So I certainly keep a close eye on my whole pelvic area to make sure that nothing is coming back or I’m not developing a new cancer in that area.

They say that you should start colorectal screening at the age of 50, and I was 26 when I was diagnosed. I would like this age guideline to be changed. Maybe because I am at Hopkins, or because I am a young colorectal cancer survivor, I hear about young adults being diagnosed with colorectal cancer all the time. Usually there are no symptoms, and by the time a person is diagnosed with colon cancer, it is advanced. The treatment for colorectal cancer is astronomically expensive. There’s no reason why they shouldn’t screen at an earlier age. They’d be saving themselves so much money.

Survivorship means living life to the fullest and being there for other people who have just been diagnosed with cancer. It means showing them that there is life, not only during cancer treatment, but after cancer treatment. You can live a full life even though you’ve been diagnosed with cancer and through the cancer journey.

My name is Eden Stotsky, I am 32 years old, and I’m a six-year rectal cancer survivor.

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