Stories

Pamela

A divorced mother of three adult children, Pamela was diagnosed 16 years ago with stage 3B ovarian cancer. She has survived five recurrences, multiple surgeries, scores of chemo treatments, and one surreal radiation experience.

Life was good. I had just bought a condo after selling the home I raised my kids in, and then, wow.All of the sudden, I had intense abdominal cramps and a watery period. I had been through menopause years before, so I knew it wasn’t that. My gynecologist said it was probably an ovarian cyst, so I went through pre-surgical stuff and had an ultrasound. I got a call a few days later that they found some irregularities and thought it was more than just a typical cyst. My gynecologistsaid she thought that this was beyond her and could refer me to an oncologist.

I was totally stunned when I heard that. I didn’t panic, it was really more surprise. Two very good friends had been diagnosed with ovarian cancer, which helped to deflect how startling it was. Thankfully, I heard the news at work so I could talk to my boss, a long-term friend and former priest. He was a good shoulder to lean on.

Mostly I would be OK during the day when there were people around, but I’d wake up in the middle of the night and would just panic, thinking I could die, and wondering what I was going to do.The fact that I lived alone made things harder. I didn’t want anyone living with me, but just to have a little moral support or someone to chat with would have helped. I was in shock; it didn’t seem that this should be happening to me.

La La Land

Making the first decisions was hard; I was in la-la land. My gynecologist scheduled my first appointment with the oncologist for me. She was so good and so knowledgeable. I swore by her and everything she was doing; I just put myself in her hands. During surgery, the doctors removed just about everything they could. They did a lot of scraping, trying to get all of the cells. Afterwards, they told me it was stage 3B.

They put a medi-port in, which I really didn’t like—it felt like a bottle cap under my skin—and started me on chemo. In addition to the port issues, the insomnia and agitation during chemo was terrible, since I was still sort of recovering from surgery and was also having back pain, headaches, and a rash. It wore me out. I didn’t have a lot of nausea but I wasn’t sleeping well.

My daughter came for the surgery, my sons, my sister and sister-in-law too were very helpful. I had support from people fat work and a lot of friends from church—people who would bring food or come by to help. A very dear friend would take me to chemo every time. She was an amazing and reliable friend, but it was hard sometimes since all the drugs made me sleepy. One time I pretended someone else was taking me to chemo so that I could go by myself and just sleep. 

A Chronic Disease

I hated the port, and my doctor reluctantly removed it. Shortly after that, I had a scan done, which showed that the cancer was back, so I had to have another port put in. I’m now on my fourth port and guarding it very preciously, since some of them stopped working and I don’t want to have another one put in.

During my first diagnosis the doctor told me that I’d never be completely free of cancer; that it would flare up and she’d treat it like a chronic disease. And if it came back, then we’d do it again. Hearing that was very reassuring, so I didn’t freak out when the cancer came back two years later. I was more concerned about having to tell my kids again. At the time, I was in a relationship that I wanted out of, and so I used it as an excuse. I was more disappointed than surprised, as I didn’t want to have to go through chemo and lose my hair again. And I was disappointed when the doctor I trusted moved away.

When cancer came back a second time, I started on Doxil, the worst chemo ever. I lost toenails and skin peeled off my hands and soles. Since it was working, I didn’t say anything at first, but when I started complaining of the side effects my doctor stopped treatment. Then I had a third relapse and was given 27 rounds of Taxol. Cancer came back again about three years later and I started Taxol again for another 16 treatments.

Sci-Fi Treatment

At that point we were trying to decide what to do, since the chemo wasn’t getting at it. I asked my doctor about a radiation treatment I had heard of, and she said she’d look into it. This new doctor was not as proactive as I wish she would’ve been. I was often leading the way and she’d go along with it.Initially I didn’t do any research, but these days there’s so much more information out there. Now I sit with my iPad and look things up. You can get so scared off by what you read— if you don’t have a good medical sense in general, it can be very intimidating— but if you don’t have some knowledge then it’s hard to interact with doctors.

I met with an interventional radiologist about a treatment called Y90 radioembolization. They make a tiny incision in the femoral artery, which feeds directly into liver. Then they inject radioactive seeds into liver, which kills off cancer cells without harming healthy cells. The seeds stay in the liver and are active for 15 days. We did a trial first, which worked, and then the real procedure, which was difficult as the side effects dragged on. Having so much chemo affects the mind; it’s like having Alzheimer’s. Liver radiation did too; it got better after a couple of weeks, but still was bad.

It felt like I was in a sci-fi lab during the procedure, with everyone wrapped in robes and protective gear.I was under light sedation for the liver radiation, so I could talk to the doctor. I asked how many seeds did they put in? 19 million. Three of them are the width of one human hair—how do they even develop something as tiny as that?

Ho Hum Cancer

Scans in 2017 showed some irregular cells along the perimeter of my bowel, and the doctor thought that maybe it wasn’t disease, maybe just tissue growth. They gave me Topotecan, but it made my white blood cell count drop and I got pneumonia—which I have a tendency to get anyway. Now, I no longer take the CA-125 test, as it never told us much. I used to be more anxious about it, but I don’t get stressed out about what tests might show; it’s more of a nuisance since I generally have no symptoms.

It’s gotten to the point where now I think, ho hum, it is what it is. At age 78, something is going to take me pretty soon anyway. That’s what I worry about, how is it going to take me? The possibility of being killed on the highway while on the driving to the hospital causes more anxiety than the cancer. But I do wonder what’s going to happen when my time comes; will I be laying in a hospital or nursing home?

Long Term Effects

While chemo brain never got in the way of working, I didn’t feel like I was on top of things the way I used to be. Routine work required greater concentration. At first, I would go from chemo appointments to the office, and I still traveled a lot, so it didn’t change my lifestyle very much. I thought cancer was a glitch that I would get past.

But almost five years later, things started to change, and over time it just wore me down. Slowly I started to realize I couldn’t keep doing everything I loved. I stopped playing tennis and bowling. I’ve also developed a lot of digestive issues. The long-term effects can really get to you, not the mouth sores or toenail problems. I’ve had 88 chemo infusions, and it builds up.

I was 62 when I was diagnosed and now I’m 78. If I were younger I might not be feeling this way, but everything is an effort. I wonder if I even want to do it any more.vSometimes I think I’ll do nothing except sit on the couch. I won’t actually do that, but I have backed off a lot of commitments.

I’m not nearly as socially involved as I used to be. It feels like I’m just fading away; I just don’t have the energy. The medication I’m on is really getting to me so I may not stay on it. It’s hard to describe; I just don’t really feel like I’m totally here. It’s a vague sense of going through the motions but my head isn’t in it.

Learning to Cope

In my life, I’ve had a lot of ups and downs—my divorce, my younger sister dying, a daughter giving birth at age 16, my house burning down—so I’ve learned to deal with things. I wouldn’t have accepted the cancer diagnosis as calmly without having lived through everything else. But I still wonder Why me? Why did it happen?  

I’ve never been to a support group or spoken with a counselor. I’m usually very stubborn and deal with things myself, but I’ve found that the local Ovarian Cancer Alliance has become a part of my support system. They hold a brunch every spring for survivors, and have gone from 30 survivors to hundreds, which is incredible. Ovarian cancer used to be a death sentence, but not anymore. Access to good medical care and so many medical advances makes a difference.

I’ve learned how strong I can be and how much I can deal with, and how supportive people can be even if they’re not close friends. The outpouring of love and support is incredible, as is realizing how much your faith can mean. We take so many things in life for granted, and then all of a sudden…you’d better sit up and take notice.

These days, things have leveled out. I now have more bad days worrying about finances than about health. But when I’m having chemo there are a few bad days following treatment, which prevents me doing things, like traveling. I missed my granddaughter’s birthday for the first time because of it, and that was hard. But I’m still here and still doing, and I will hopefully get to see her soon.

 

 

 

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