Confession - I have Survivor Guilt

Thirteen years ago this week, at the age of 40, I was the first of my close friends to be diagnosed with cancer. It was absolutely terrifying at the time, but I now realize I had a pretty easy time of it.

Cancer seemed manageable once I had a treatment plan and understood what was happening. I documented what I was going through, took lots of pictures of the day I had my head shaved and with my bald head. I was proud that I was going through this. And I was grateful to take some time off and rest. I assumed this was how cancer went.

My mother had an even easier time of breast cancer. She had a lumpectomy, a tiny tumor the size of a pea, and radiation treatment. That’s it. So, when I was diagnosed, my mother was my reference for breast cancer. My treatments were more intense (chemo) and longer (Herceptin and Tamoxifen), but still, once it was over, it was over. I was determined it would be over. And now (knock on wood), it seems to be. I was lucky. I had a very specific type of breast cancer that qualified me for a very specific treatment (Herceptin) that has a great track record. It was caught early (stage 2A). And, despite the year of treatment, losing my hair, losing my toenails, temporary menopause, knowing what I know now, I had an easy time.

I became the cancer girl. I became the person everyone came to when they were diagnosed, or when a friend or family member was diagnosed. “What do I do? What do I say?” I always had the same answer, because this was my experience, and because this is what I wanted to hear:

“This is temporary. This will end. The hardest part is the not-knowing – the knowing you have cancer, but not knowing how extensive or old it is, or the treatment, or the prognosis. There will be a time when this is all over.”

I suppose that is true, no matter what happens. But it doesn’t feel as true as it used to. Cancer, that scary word, became not-scary to me. I liked talking to people about their treatments, about my treatments, about shared and different experiences. About ports and hot flashes and side effects. I liked that I wasn’t afraid to ask questions.

So when, one, and then two, and then three, and then four friends and more were diagnosed with cancer, I had long talks with each of them about my experience. I expected their experiences would be just like mine. I was wrong.

Some were similar, until they weren’t. Some were completely different from the get-go. I would offer to go to appointments or scans with them, offer whatever they needed. Only one took me up on that offer.

It was a joy – truly – to walk with Amy through her first cancer treatments. I went with her to doctors and helped her formulate questions. I had the duty of calling her father on the day of her double mastectomy. But then it was over, and she was on the "road to recovery." I assumed she would have the same experience I had. She would move slowly into a new life – one as cancer survivor. Neither of us liked the war imagery that so many use – we never felt like we were fighting. We were living with cancer. And then we were living as survivors, right?

However, one of my friends who was diagnosed after me had a much more difficult time with the chemo. Kaytie had to be hospitalized every time she had treatment. Her cancer was sneaky, and every time she would finish a round of treatment, a scan would reveal more cancer. She had surgery after surgery to cut out the cancerous bones in her face. She had a prosthesis in her face to give her nose shape and to give her a palate to chew with. She continued to sing. She had a beautiful voice, and she became a warrior for awareness of head and neck cancers. But every time she sent an update about her condition, the outlook was worse. She died in 2019 surrounded by her family.

And in 2018, two of the friends who were diagnosed after me had metastases of their breast cancers, and my sister-in-law was diagnosed with pancreatic cancer. This was all different. My cancer experience began to seem quaint.

None of these diagnoses were positive news. They were all discussed as “terminal.” My sister-in-law, who was scheduled for chemo quickly after diagnosis, ended those treatments early because the sores in her mouth (a side effect of the chemotherapy) were so intense, it was impossible for her to eat. And after a Whipple Procedure (a surgery where they remove the pancreas, the stomach, and part of the intestines), she took a turn. Despite days of being energetic and upbeat, she never fully recovered and died just after New Year’s in 2019.

My two breast cancer survivor friends took different attitudes toward their diagnoses. Amy was sure that she could heal herself by remaining positive, and healing childhood and generational trauma. She took herbs and drank green juices and ate a vegetarian diet. She meditated and she painted. She got on with her entrepreneurial endeavors, creating and healing in ways that felt good to her. She told her doctor in no uncertain terms that she did not want to know her prognosis. She heard a doctor once say, “We are talking months, not years” and she made him leave the room. She did all her scans, and she took the treatments that were recommended to her, but was convinced, even after going on hospice, that she could actually heal herself. Amy transitioned from this life while I was holding her feet. In December, 2021.

Erin was much more pragmatic. She was also creative, but as a performer and a warrior for social justice. She was very open about what her chances for survival were, and she was going to do everything she could to continue acting, singing, producing while she was still on this Earth. She was featured on podcasts and cheerfully described the hell she would go through as she lost her voice for a time (though she got it back!), and she would write long Facebook posts about the times when her red blood cells were so low, they wouldn’t allow her to get the chemo that was keeping her cancer at bay. She continued to drink bourbon and eat cake because she wanted to enjoy the life she had left. She married her partner months before she passed, in what looked like a joyous ceremony.

These two friends of mine died within 6 months of each other. Each having lived over 3 years with stage 4 breast cancer.

I'm sad to admit there were times when I would judge one or the other of all these people for her choices. I think I felt that if they had made different choices, they wouldn’t be in this position. (I never once voiced these judgments or concerns to the person, and I’m glad I didn’t, because it would not have changed anything – and they would likely have resented me for the advice.) But they made the decisions that were best for them. I wish I could have been more honestly and enthusiastically supportive.

Cancer is a beast – but it is a different beast for everyone who encounters it.

If people like the warrior metaphor, they can have it. I don’t like it. It feels like there are winners and losers in that metaphor. I am a survivor. But there was nothing specific I did to survive. I followed the advice of my doctors, and I was lucky. When a plane crashes, some may survive while others perish. Those who carry on often have survivor guilt. This feels truer to my experience.

Some don’t follow the advice of their doctors, live for years, even cure themselves. Some do that and die. Some take all the treatments and pass away quickly. Some take years of different treatments, continue for a time, and pass. But they are still survivors. They all lived with cancer in the best way they could.

I’m still grateful for my experience (even the survivor’s guilt I’m currently feeling) because I can talk about cancer in a way that someone who has never encountered it cannot. I love being the one that people call when they want to talk about it. I still love learning more.

But I have a broader understanding of it now. Last year, another friend was diagnosed with breast cancer. She is doing well after finishing a year of treatments. I told her something I heard when I was first diagnosed:

"You become a survivor the day you are first told you have cancer. From that moment, you are living with cancer and surviving."

I understand the spectrum of what cancer is capable of. I respect it in that way. I’m a survivor. We are all survivors…for now.