One of the hardest things I have ever had to do was tell my daughter that I had cancer. If I hadn’t required chemotherapy, which of course meant losing my hair, I may not have told her; at least not so soon. But how else could I explain my impending alopecia? And really, my girl and I have always been close, and I find it very hard keeping things from her. I can’t remember what words came out, but I do know I should have said right then, “It’s not hereditary, my having this does not mean you will one day face this.” For until I did say that sometime later, she was afraid. Of course she was scared anyway, but I could have cut out this tiny part of her fear. I have no family history of breast cancer, but sadly, now she does.
I couldn’t tell my mom. Someone special did that for me. I have never asked her about that conversation.
I was in a terrible relationship. When I realized I would have to leave my job and begin treatment right away, and that I had used up all employment benefits I had on my recent maternity leave, I asked him how we would get by. He had been financially exploiting me, and barely contributing to his children’s financial needs, and he said nothing. Two weeks later I asked him to move out until he could contribute financially to the household. From that moment, if not before, I was truly on my own.
I would attend nearly all of the medical appointments over the next year alone. My mom would have taken me, but I didn’t want her to have to be there, I couldn’t stand the idea of putting her through that, so she cared for my kids on many of those days. And as treatment began to take its toll, she would care for all four of us, often coming to my house daily to help. My mom never complained, and was never too tired, despite being in her 70s.
I would feel terribly guilty for all of her help. I always made a point of saying Thank You. I would hate having to call and ask for something on a day where I had just lost all my energy and couldn’t cope with two toddlers and a third grader, a messy house, cooking, and the kids’ bedtime. Bedtime was the hardest of all. It was only when someone pointed out to me that if (heaven forbid), it had been my daughter, of course I would have done exactly the same. Then I was able to let go of some of the guilt. Sometimes my mom would take all three kids to her small apartment so I could rest, alone. I needed that, but god, did it ever make me feel even more guilty that I wasn’t spending that time with my kids.
Having always been hyper independent, needing help is a very uncomfortable place to find oneself. Perhaps just as difficult is giving in to the lack of privacy that comes with needing help. I strived to go through all of this with dignity and grace, which I learned from a dear friend living with terminal cancer, diagnosed 16 months before my own. I failed, many, many times. I experienced anxiety, depression, anger, sadness, fear. I was often a hot mess of tears and raw emotions and talking too much or not enough. A lot of healthy people don’t really know how to handle someone else’s cancer. It scares them away. Most of the few friends I had left backed away, or disappeared from my life for good at this point. Being a single parent, living in a semi-rural area, and being sick and tired all the time, I didn’t connect with the cancer support groups until much later.
One year later, I started a non-profit helping other mothers going through breast cancer treatment. I finally ended that terrible relationship for good, and my psyche began to heal, as my body did too. I joined a photography guild and a local arts group. That year I would travel to a conference in California to learn more about the science of breast cancer and breast cancer advocacy. There, I remembered how much I love learning.
Two years later, I felt sicker than ever. It was then, after being told I was suffering from depression, that I learned about post-cancer related fatigue. I felt more exhausted than even during treatment. My mom still came and helped often, as I could not take care of myself and my kids on my own full-time yet. Yet I had my first showing of my photography and published a children’s book I had written that year. The night of the art show opening was one of the happiest in all my life.
I took my daughter, then 10, on a mother-daughter trip to make up for some of the time I felt I had missed in her life. We went to Costa Rica, volunteered at a sea turtle rescue project. We went zip-lining in the rain forest, and shopping in the Capital. I have travelled many places, alone, and with others, but this trip is the best one I have ever been on. My girl was the best travel companion I could have wished for. We both still dream about going back. I recognized then just how much she had been craving one-on-one time with me, and from then on I changed our family’s schedule to spend more time with her, just the two of us.
Three years later I was still suffering chronic fatigue. Chemo brain memory loss meant I was still in a mental fog some of the time. I forgot to write down appointments and missed them. I still had little appetite, and was still underweight. I continued to spend the lion’s share of the energy I did have on time with my children, growing up too fast. I still needed help with errands and housework, cooking and cleaning.
That summer I was finally able to take my twins out of part-time daycare. All of us went to the special cottage we rent for a week every summer. The place my son had packed his bags for over and over all through the winter, asking nearly every day, “When are we going to the cottage?” Our little piece of heaven. Swimming in the tidal river, skipping stones. That summer I took my boys camping for the first time.
Four years, still so tired. I felt like I would never get any better. My hair is close to the length it had been, so I bleach it Marilyn-blonde. I went through a hard few months battling fatigue and depression, frustration and loneliness. And then, one spring day, I got up, and tried my best to just get through that day doing what needed to be done. And the next day, and the next – I found I could do so much more again. I still tired easily, like taking one step forward and two steps back – I could have one or two ‘normal’ days of activities, and then crash for a day or two in exhaustion. But then I could do it again, and again. And the depression lifted. Looking back, I feel this past summer with my kids was the happiest summer I can remember.
When fall came, I decided to take a chance, a risk: I ran for the elected office of School Board Member. At first, I talked myself out of running, feeling I was just too tired to possibly take anything new on. That I had only had a few months of starting to feel like myself again. But then, being me, I figured, “What the heck?” and put my name down as a candidate. And I won!
Today marks five years since that awful day when I heard the words, “You have breast cancer.” Years I might not have had watching my children grow up. Time I might not have had to work on personal goals in my photography and creative life. Opportunities to see new parts of the world, meet new people, learn new things I might never have been able to accomplish. Five years of sickness and healing, loss and recovery, terrible sadness and tremendous joy. Five years knowing every second counts, no matter how imperfect.