Stories

Susie

Susie was diagnosed with stage 2 anal cancer at age 68, and testing after treatment suggested it had metastasized. She looked to her faith and relied on her family to help her get through treatment.

I was exercising in preparation for my daughter Christine’s wedding and felt a twinge in my butt that I assumed was a muscle. When I did a self-exam I could feel a lump along the wall of my anal canal and into the rectal area. I didn’t say anything but scheduled a colonoscopy for after the wedding.  

I pride myself on being physically strong and fit. Previous life experiences made me strong. My mom died when I was a kid and I had to be strong when I got pregnant and dropped out of high school to get married. The father of my kids also had emotional problems, which manifested themselves in all the ugly ways you could imagine. Staying with him for 18 years took a toll on the kids. And on me. I knew when I was 30 that I had to get out of the marriage, while I was still beautiful and full of vitality. When I first detected the cancer, I knew I was screwed, but knew I could deal with it because I of my life. 

Being the Sick Person

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Susie (left) and her siblings

The actual diagnosis was difficult. They didn’t take a proper biopsy originally, so it took six weeks—two colonoscopies, and another biopsy—before diagnosing me with stage 2 anal cancer. I couldn’t hear doctors talking to me, so one of my sisters, who is a nurse, came to all my appointments and asked questions and took meticulous notes. It was very hard for me to absorb that I had cancer. Did this mean I was a sick person? I don’t mind dying—I have a very deep faith—but the thought of being a sick person was hard. I didn’t want to be a burden to my family. People would say, “you’ll be fine, you’re strong,” assuring me I’d be OK when they’d never been to the doctor with me or know anything about my case. It made them feel better, but made me agitated. 

I had daily radiation treatments for about two months, then had to take two weeks off because my vaginal and anal skin broke down. Then I had chemo. I felt bad in every cell of my body. It wasn’t something I could pin down. It affected my brain and whole physicality. My body was doing so much rebuilding that the discomfort in my midsection was huge; my bowels, kidneys, the discomfort hasn’t passed yet, although I’ve been increasing my activity level, which helps me feel better. The healing process was frustrating because it took so long. I’ve worked my whole life and was aggressive about working, so that was difficult to not feel well enough to work.

Back for More

I had a PET scan six months after treatment and told the doctor I was happy to say goodbye to him for at least another six months, but he said, “Not so fast.” My scan wasn’t clean, and the process restarted. I had 20 different appointments and procedures as they tried to figure things out. And I was impatient. 

There were two spots in my breasts, against my chest wall where they were hard to get to and properly biopsy. My dad had breast cancer and I’m a lot like him, so I figured I would also get breast cancer. It was very hard to deal with that. I had two separate breast biopsies, which didn’t show any cancer, but they finally removed those lumps and it was fine. Meanwhile, one of my ovaries was enlarged from the radiation, so I had my ovaries and fallopian tubes removed just to be sure. It was tedious. I was greatly challenged for months, waiting for the results. It was a relief that they found no cancer.  

Several of my father’s sisters died of cancers that metastasized; that’s a long, painful death. I remembered seeing that pain, and assumed it was going to happen to me. I was freaked out, after what I went through the prior year. It was very hard. I tend to live in the future rather than past, planning and looking forward. I was thinking that this could be really bad, and then I couldn’t plan my future. 

Faith and Family

I have such deep faith and have a supportive family. When I was in really bad shape and couldn’t walk, Christine was there 24/7. I have seven siblings and I’m the duckling and they are the hens taking care of the duckling. They were incredible to me. My brother, Kevin, took care of me through the chemo and I stayed with him and his wife, Kristen, during radiation. I never felt isolated emotionally or physically for a second. 

When you have anal cancer, you still have bowel movements, but radiation really makes a mess of things. When my skin broke down I passed bowels in the shower and would be screaming and crying, and Kevin would be just outside the door, encouraging me and supporting me. He would help me back into bed. I just lived to not have to discuss my bowel movements with my family.

My parents and one brother are in heaven and on the bad days, I would talk to them. When I was in the shower, experiencing pain, I would reach out to my brother Billy who died. Also, I would talk to my Dad and Billy a lot and even did hypnosis. I may have had physical pain, but never emotional. I couldn’t go there; once you go down that road it’s hard to come back.

Receiving Love

My faith never wavered for a second. I was upset the night before starting treatment and went to mass with Kevin and Kristen. I was faced with the reality of the process beginning, but not knowing what it would be like. At church there was a free-hanging cross that I couldn’t stop looking at. I said, if you help me with the emotional aspects of this, I’ll do the physical part. Kristen said I was such an example of being strong and positive, and that I was holding up so well. I told her that I asked God what he wanted me to learn from this. At the time, I didn’t know what it was, but now it’s clear to me—love—and how many people care.

I took my time, about six to eight months, to write thank you notes. I write beautiful letters and wanted to give back a piece of what people gave to me. The year 2016 was the best year, I received more love and caring in my life than anyone deserves. I was surprised by how many caring people there are in the world and how much people loved me. What a gift it was in my life, because we all learn from the experiences and journey in life. If you’re not learning, then you’re dead. One of the nice things about technology is that people could text or email me, sending me that love. It’s better to say “I’ll be thinking of you, know that I am in your corner” as opposed to stating a medical opinion when you’re not in the medical community or aware of my facts.

Moving On

I had the most fun with the radiology team, since you get close to everyone there. Given all that they had done for me, I wanted to do something nice for them. So, I had a catered luncheon set up and made a personalized a card with caricatures of the five people in the department with the things they always said. I counted my blessings. They treated me the way they would treat their beloved mother.  

I’m not healed emotionally or physically, but I’m working on it. I love coffee, but it made my symptoms worse, so I stopped drinking it. I also can’t have alcohol and need to be careful with what I eat. I’ve placed a lot of demands on my family: get your colonoscopies, lose 20 pounds, don’t eat sugar. I’m different today as a result of having had cancer. The qualities of a simpler life appeal to me. I feel fewer possessions is more, and I’m passing along family heirlooms to my daughter now. Things stress me out much less, I accept the humanity of the people around me, who are sometimes flawed, sometimes amazing. I’ve always been kind to people, but now I relish the kindness I was shown and still experience in my daily life.

People relate to me differently knowing what I‘ve been through and show compassion and concern for me. Everyone’s experience and pain has to be acknowledged. People will say “how can I complain given what you’ve been through?” But I have a way of blocking out difficulties of the past: talk about something exciting in your future. You don’t want to relive the past. So I don’t allow myself to think about the possibility of the cancer recurring.  

Choosing Happiness

The chemo definitely affected my thinking process. I’m less focused but I take my time. I’ve always been methodical about lists and tasks and have that to fall back on. Ann Landers once said the best way to eat an elephant is one bite at a time. That’s always been my motto, and now more important than ever. When I’m overwhelmed with things, I remember I can get to the end if I start at the beginning.

I’m excited about my future and feel very happy with what I can offer the world. There’s an inspirational quote about a person not in the best of health, “get healthier every day—someone out there needs you.” First thing in the morning, choose to be happy and your life will be much easier. When going through difficult times you have to pick where your happiness is and focus on that more than your troubles. Force yourself to count your blessings out loud and say what gives you happiness. Putting happiness on the top shelf has brought me from the depths of misery.

Another motto that I’ve had in my kitchen forever is, “Don’t pray for an easy life, pray to be a strong person.” Cancer never challenged my sense of self, it was just part of life experience. My sister, who’s a nurse, told me “cancer changes you, usually for the better, but you will never be the same after this,” and she was right.

 

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