A retired social worker enjoying life in coastal New England, Charlotte was 71 when she was diagnosed and started a treatment process that made her feel old, but lucky.
When I was at radiology for my regular mammogram, the doctor saw some calcifications in my breast tissue, so wanted to do an ultrasound. Then I was told, “That doesn’t look good. Let’s do a biopsy.” So, then she did core biopsies, and placed seed markers right away. I was thinking they were just doing their tests, it’s what they do. Maybe I was a bit fearful, but not terribly upset. It was odd how I remained calm. My husband, Thom, was upset, but I felt it is what it is. I had had a tumor in my left breast in 1973 that was benign, so I definitely had a sense “everybody else gets cancer, but not me.” We were there for so long, they brought us lobster rolls, which is what you get when you’re in a hospital in Maine!
When we left that evening, the doctor told me they would probably have the results the following Monday or Tuesday, so I was surprised when she called on Friday. It was a beautiful June day and my family was over, and we were all sitting outside eating fried clams for lunch. I grabbed the phone in the kitchen and heard the doctor say, “You have cancer.” Immediately, I cried — tears just came down my face. I was surprised that it was me, and damn it, it was a Friday and would ruin the weekend. But, I sat down again, and we finished eating, then I told Thom and my daughter, Shannon, the news. The surgeon wanted to see me right away, so off we went.
When we got there, the surgeon was so casual and calm. He was very upbeat. “It’s small and we caught it early,” he said. The only urgency was that he was going on vacation, so he wanted to meet with me before he went away! Shannon had come with us. She’s in pharma and so good at talking to doctors, so I let her manage things. It was a burden off me to have her asking questions and accepting that the doctor’s advice was good. We met for three hours! He already knew what type of cancer it was and told us everything that was going to happen. It was so much information. I probably would have preferred to wait until Monday, but my daughter was on the case right away figuring out next steps and making plans.
The plan was to have a lumpectomy, which would be done as an outpatient procedure, followed by chemo, radiation, more chemo and hormone therapy. I was told that I was a candidate for nano-site targeted radiation because my tumor met the size criteria and was contained. I could have a balloon inserted right into the site where the tumor came out, so they could target the radiation. It would be delivered right into the area of the cancer. And, that meant it would only be for five days, twice a day. That seemed like some good news.
People were surprised that I wasn’t more upset, but I was just focused on what we have to do next. Even my pastor asked why I wasn’t upset about my diagnosis. I told her I felt I needed to be strong for my daughters and show them what a good fight should be. I have never been afraid of death. If death is going to be the end of this breast cancer, then so be it. Of course, at the point of diagnosis, I had no idea of what was going to happen to me. You just do what you have to do.
I had the surgery a month after diagnosis and went home the same day. Two days later, I went back to the hospital to meet with the radiologist. It was odd, but nobody made eye contact with me when I was checking in, which is so unusual for our little town. Also, the doctor made me wait, which increased my sense that something was wrong.
When I finally met with him he said, “I’m sorry. We have to pull the balloon. Your cancer has spread to your lymph nodes. The good news is, we got clear margins all around.” He was very casual about everything, which really helped put me at ease, but that meant I would have to do full breast radiation, instead, to capture any lymph nodes in the area too. When he took me into the next room to pull the balloon, I was surprised to learn it was filled with saline. He had to drain that first. Mostly, it was so disappointing. I had thought I would have the easy radiation, but instead, it would be five times a week for seven weeks.
Radiation was uneventful. But, it’s an intense experience and you can’t help but share it with those you meet who are on the same schedule as you. Every day for seven weeks, you see the same people and you begin to chat. So, you become close with the other radiology patients. It even breaks down the walls between doctor and patient. With cancer, people allow you into their personal lives.
I made friends with one woman who had the exact same kind of cancer that I did. As the fatigue from the radiation set in, she assured me, this is not your new normal, this is temporary, just what you are going through this week. It was important to hear that. On the last day of radiation, I was sad that I wasn’t going to see the radiation team again.
I wanted to enjoy a bit of summer, so didn’t start the chemotherapy right away. After meeting with four different oncologists, I began at the end of September. The plan was to get Herceptin, Perjeta, Taxatere and Carboplatin. The doctor I chose gave me a very aggressive dose of this whole cocktail because given the lymph node involvement, the cancer could spread.
I had a very bad reaction to one of the medications on the 12th day after the first round of chemo, and I nearly died. It killed all of the mucus membranes in my intestinal track, and I had very bad diarrhea — uncontrollable evacuations every three minutes. I was alone at the time and very frightened. It was the first time I was ever alone with the disease, and thought I literally was going to die. I passed out and my body was cold to the touch when my family found me. They thought I had died.
I was in the hospital for several days after that. Doctors didn’t know how to treat it. At first, they thought it was C. Difficile, a deadly infectious disease, so I was put in isolation right away. When they finally figured it out, it turned out that simple Imodium would do the trick.
After a couple of weeks off, I restarted chemo with lower doses and switched to Taxol rather than Taxotere, which was what gave me such a hard time. Every three weeks for Perjeta, Taxol and Caboplatin, and Herceptin every week, for a full year. Towards the end, it was just Perjeta every 3 weeks and Herceptin once a week.
I had a lot of fears about chemo, and it turns out to have been with good reason. I thought I would be vomiting all the time. That didn’t happen. But I didn’t feel great, had to drop out of a lot of activities because I was so tired, and I had a lot of diarrhea. In the first month or two I lost 30 pounds. I often didn’t feel well, but one of my daughters always came over. And I definitely experienced chemo brain. I had all sorts of trouble with the recall of words and names.
When I started to lose my hair, and it was all over the pillow case, I decided cancer wasn’t going to control my hair too. Instead, I made a party of cutting off all my hair, to be proactive about it. I’m not a wig person and didn’t do anything to cover my head. Actually, I gained a lot of respect being bald. It was real attention-getting. Strangers respected me and helped. They didn’t cut me off in line, but instead held the door for me. They were aware that I was sick with cancer. It’s so different from the invisible effects, like neuropathy or even having knee surgery.
I also had neuropathy and achy legs, and the diarrhea persisted. I ended up having to have protein shakes because of weight loss. My doctors were worried about the weight loss, but I wasn’t. I also lost my fingernails to the quick and my fingertips became painful and numb. It made it hard to fasten buttons, put on jewelry or turn pages in a book. I also got nosebleeds frequently.
These things weren’t significant once they passed, but they kept happening. The Benadryl, for side effects, helped the nausea but gave me restless leg syndrome within 15 – 20 minutes, so I had to stop that. I had a strong reaction to the steroids too. For three days I couldn’t sleep. I would stay up all night reorganizing the kitchen drawers, painting the house, making out Christmas lists, and also made me talk too much. Eventually I had to get off that too.
I always knew that I would get through chemo. I didn’t like it, but it was clear that the side effects were just a part of what chemo was doing to my body. You realize later that it’s kind of crazy to purposely put poison in your body. It was a long time before I really appreciated that I was putting poison into my body. It kills the bad stuff, but also kills some of the good stuff.
I have to take aromatase inhibitor for 10 years. It’s done a number on my legs — I needed PT to get moving again. The doctor changed my prescription to another inhibitor that’s easier to take, but I still don’t want to take it. The doctor said it’s my choice, but I’m fearful of the cancer coming back. I still get a little freaked out with random symptoms. He had told me I had to be aware of any changes in my breasts, in my bones, in my liver, lungs and chest wall. So, if I get a random pain, I assume it’s the cancer coming back. Maybe I’m a little paranoid about it. I went to the ER for back pain and was assured it’s not cancer.
I didn’t like giving up activities, a part of my life, but I haven’t yet picked up on all the things I gave up. I’m not sure if it’s because of the cancer or general desire. But it’s not from lack of physical energy. And my sense of humor has come back with a vengeance.
I learned things, met great people, saw how their devotion could make a difference in my life. I was really taken aback by the outpouring of love, especially from the “family” at church where I sing in the choir. It was great to be back in that community. But, people don’t know what to say to me, and I was so worried about their discomfort, so I just smiled. If you have a big smile, everyone assumes you feel great and it puts them at ease. And then we could talk about what I wanted to know — what I was missing out on by being at home.
It made a huge difference to have the loving support of my husband, Thom. He was my primary support person and walked every step with me. I was able to give to him full responsibility for lots of things, like note-taking and knowledge of all the drugs in my chemo, etc. He kept a daily journal. I never had to bother with knowledge of any chemo chemicals or their side effects. I strongly suggest that everyone have a person to care for them and provide support at every step. Don’t know how anyone could do this alone! Thom made it very easy for me. I could actually be lazy about some things and dumb-down!
I think I learned that you’re stronger than you think you are. Dealing with cancer is not easy, but it’s not terrible either. It gives you a different perspective on life, a bigger appreciation of the suffering of others. Once you have experienced cancer, you will never be the same. If you haven’t experienced cancer, you will never be able to imagine what it’s like.