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Survivor Interview – Stacy H.

Stacy is a papillary carcinoma survivor. She discusses the aftereffects of radiation treatment, changes to her thyroid, and communicating with her husband.

A blonde adult woman wearing a black V-neck shirt is interviewed against a white background.

I became a cancer survivor when I was diagnosed with papillary carcinoma in January 2000.

It was a very curious tumor that they found, because it was thyroid cells. They noticed a very large tumor behind my esophagus and thought, “We should go in there and get this out.” I really didn’t think anything too scary, although I was concerned that I did have this mass inside my neck. It wasn’t until after surgery that they told me I did have cancer, but they got most of it, and they would get rid of the remaining cancer through radiation treatments. At that point, it didn’t hit me. Even still, I thought, “Oh, okay, so I’ve got cancer. Let’s just roll through the motions and see what happens next.” So here I am four years later and still have it. Still dealing?

I had several radiation treatments post-surgery. I had that treatment and then had to wait months before they could retest me to see where my cancer levels were at. They have to wait till most of the radiation eliminates from your body to get a good read on everything. I wasn’t cancer free, so they decided, “Let’s go in again.” The following year, I went through yet another radiation treatment, and that didn’t do the trick. We skipped a year, and then my cancer levels doubled this past year. I was treated again with more radiation. They discovered that it still hadn’t gone down to zero, so I haven’t really heard the term remission yet. I was expecting the parade of, “Yay! It’s gone. Okay, it’s over. I can continue on with my life.” No. That didn’t happen. I’m experiencing more of a chronic illness, where I have to be constantly monitored, looked at, scanned and get blood taken. In a way, I feel very protected because I’m watched so diligently. But on the other hand, I feel like there’s a monkey on my back that I just can’t shake, and it’s very, very frustrating to experience that. I don’t want to go through treatment again.

The side effects happen when I go through the radiation treatments. I’m given a very large radioactive iodine pill, and then I’m in quarantine for several days at the hospital until the radiation levels get down to normal, to the point where I can’t contaminate anybody else. Even then, when I’m released from the hospital, they recommend, “You shouldn’t be near your children. You shouldn’t sleep side by side with your husband during a whole night.” So I’ll go away for four or five days after I leave the hospital to cleanse myself and drink lots of fluids. They get you to a point where you’re extremely hypothyroid, which means they don’t want any thyroid function in you whatsoever. Because they took my thyroid out when I had the initial surgery, when they take away my supplement of thyroid that my body needs to function, I feel a lot of side effects. I’m depressed. I’m tired. I gain weight. I come down off this normal period of my life for six to eight weeks to get to my lowest point, where my body is so completely hypothyroid and very vulnerable, so the treatment is more effective. It could be 16 weeks total of feeling cruddy and not normal. My side effects include a combination of me not having my regular thyroid medication and going through the radiation treatments.

Insomnia and sleep problems were related to the preparation of the treatment and the treatment itself. It’s actually two-fold. Part of hypothyroidism is feeling down and low. You don’t want to move. Your whole body is very depressed. But on the flipside, it’s very difficult to sleep. Then when you go through the radiation treatment, the idea is to get it into your body as quickly as possible, let it go where it needs to go, and then just as quickly as it goes into your body, they want you to flush it out, because they don’t want the radiation to sit around in your organs. So you need to drink lots of fluids. I was constantly drinking and constantly eliminating. That’s around the clock. I spent many, many nights, getting up and down, and just when you get comfortable, you’ve got to get up again to use the restroom. My body has never really clicked back into a normal sleeping pattern since I was diagnosed. I crave the escape that sleep gives you. And I haven’t gotten it in a while, in a long while.

The hardest part is my kids don’t understand cancer. They’re eight and ten. The worst part—the surgery and everything—took place when they were four and six. So it was easier for them to fluff everything off as kids do. They’re so resilient. As the years went on, they really started to question, “Why are you going away again? How come we can’t see you?” It was hard for me to determine exactly how to tell my kids that I’m gonna be okay, but at the same time, there’s something very wrong with me. It may not be cured overnight or the medicine might not take it away completely. It’s hard to explain to a child that there are so many different levels to cancer. In a child’s eye, that can be very scary, because they may relate cancer to death. It was hard to shelter them. I did my best.

My husband tried to be very strong for me and for my children. I felt guilty a lot of times, because there was so much I had to give up as a mother. It was hard to relinquish that control to him. A lot of times during post treatment, where I was starting to function again as a wife and driving the kids to school or to lessons, I felt like things started to relax into normalcy again. But really, inside I was hurting. I was frustrated. I wasn’t feeling really well, so I’d snap a lot. I’d be angry, and it would catch him off guard. There were arguments. I wished that someone could completely understand where I was coming from, but that’s impossible for anybody who’s not going through it. At the same time, there is this closeness. Through all of the darkness and the hard times, you seem to come out of it with such a rock solid foundation in your marriage. You’re thinking, “Oh, thank God I’ve got this guy by my side. I couldn’t go through this alone.” We worked through it. Maybe I should have gotten counseling. I went through this thinking, “I can do this. I can do this.” But then there are points where you are just screaming inside and you don’t want to think about it anymore.

The intimacy definitely is related to the hypothyroidism, having to go down into the lowest point. You don’t want to be touched. I really, really withdrew, and it was hard for me to be open-armed again and everything took effort. It took effort to be happy. It took effort just to function as a normal person. So that went to many different facets of my life, including intimacy with my husband. I think anybody would react. He felt rejected and felt like maybe he did something wrong. It had nothing to do with him. It had everything to do with me and the fact that I just wasn’t in the mood. I had way too many other things on my mind to relax and it did affect us. But then everything came back around again, and then everything went back down again. We were up, and then we were down. Right now, things are looking really good.

Survivorship means being able to deal with cancer, being able to survive with the cancer. I wouldn’t call cancer my friend, but cancer is in me. It’s a part of me. I am continuing to live my life and survive with this cancer inside my body. So survivorship, to me, is being able to live my life to the best that I can possibly live it for myself, for my children, for my husband, and trying to be happy and cohabitating with this disease.

Livestrong. Don’t ever give up. Living strong is just trying to be the best that you can be despite what you’re going through. Living strong in my life today is when hard things come my way, and it may not be cancer-related, and overcoming those obstacles, finding a way to live your life the best that you can, looking around and being thankful for everything that you have, and taking that energy to a whole new different level.

My name is Stacy Holborow. I’m 40 years old, and I’m a papillary carcinoma survivor.

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