Survivorship, the Hardest Part After Cancer?

I remember sitting in the oncologist’s office with my 28-year-old daughter at a checkup after her very last breast cancer treatment feeling very good about life. The pathology on her last surgery had shown no active cancer, which was very exciting news. She had gone through weeks of chemotherapy and radiation, and three surgeries and it felt like she had gotten over the finish line. The oncologist spoke about how pleased he was that she had been able to tolerate the aggressive treatment regimen and then said something that surprised me:

“Now you’re going into survivorship, and that can be the most difficult phase of cancer, so I want you to be prepared.”

More difficult than losing your hair, your body and mind not functioning properly, and having to put one foot in front of the other and sit in the chemo chair for twenty weeks knowing how awful you’d feel afterwards? More difficult than being hooked up to a breathing apparatus for six weeks of radiation and fatigue knocking her out and her skin being red and painful? More difficult than three surgeries and wondering if she would get back full range of motion in her dominant arm after the last one? How could that be?

But now I get it.

When my daughter was going through treatment we were both in action mode and between medical appointments and keeping her healthy so she could continue there was no time to dive into all the emotions that came with the diagnosis. Once that busy phase was done, though, the nightmare of it all started to seep in.

Triggers were everywhere and each twinge or itch took our anxiety from zero to sixty in two seconds. Post-surgery lymphedema meant being 28 years old and realizing she had to wear a compression sleeve for the rest of her life. Radiation recall dermatitis raised the fear that the cancer had returned and caused more pain and more medical treatment. Losing eyebrows and eyelashes a second time due to the normal replacement cycle, four months after they grew back, meant looking in the mirror and seeing her cancer face all over again. Due to the type of breast cancer she had, she has to take medication to help prevent recurrence for ten years that thrust her into chemically induced menopause, and she experiences the aching joints, sleeplessness and the mood swings that come with it. I still get calls because something has dropped her to her knees in tears of sadness and anger.

And yet…

In the five and a half years since she was diagnosed, she has fallen in love, had a baby, gotten married, changed her hair five times, received several promotions at her job, and bought a house. And I think surviving cancer in her twenties had something to do with that.

There is a determination in her now, a way she manifests things that wasn’t there before. There is some luck, of course, in how her life has gone since she finished active treatment, but she has carved out her path and diligently worked her way towards achieving all the milestones she put on it. She has shaken her fist at the universe and dared it to come at her again, all the while knowing that there are no guarantees even this far out that it won’t.

Looking back, even though the treatment phase was horrendous, I agree with the oncologist. Survivorship for us, perhaps because in our case it could last a very long time, means my girl living her life in three- or six- or twelve month increments until the next scan for as long as she lives or until a cure is found. It means tucking away the fear and grief and trying very hard to live like everyone else does but it is taking just that little bit more effort to do so. It means looking at her little girl and hoping she will be lucky enough to see her grow up.

Having breast cancer at 27 will always be a part of my daughter and it still informs a lot of her decisions. She is doing all she can to take back control of her life and plan her future and I think she’s doing a pretty good job of it. But if a typical woman of her age is asked where she hopes she’ll be five years from now she might talk career or love or adventure.

Mine, well, she just hopes she’ll be alive.

Survivorship.

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