cancercamehome | Getting on with family life while getting better

This is a reblog of Laura’s latest blog post:

The magnolias

announced themselves too early.

Frost has browned their buds.

It’s the beginning of April.  Another spring, and one I feel blessed to see.  It was so warm in March here Luella and Ellis played in their bathing suits in the driveway and Jim prematurely put the winter coats and boots away.  A week later I was digging them out from the basement.  The ups and downs of the mercury remind me of my own post-treatment highs and lows.

A year ago I was in the midst of chemotherapy, literally fighting for my life, being killed by drugs so I could hopefully live again.  Added to the physical fight was the knowledge that only 30% of women with my diagnosis live five years and that consensus in oncology is that metastatic breast cancer is terminal.  And, miraculously, here I am a year later under close and regular scrutiny, disease free.  Better.

A lot of the women I’ve been speaking to about the early post-treatment stage of survivorship talk about similar experiences.  Many describe how well-meaning people expect them to be the same as they used to be, yet how they still experience fatigue, sometimes struggle with depression or cognitive changes like memory loss, and how they are unhappy with the changes in their bodies.  Recurrence is a fear that preoccupies many survivors’ minds, especially leading up to those follow up appointments.  As a survivor of metastatic disease, the numbers tell me that recurrence is a likelihood.  Above all the other discomforts and physical changes that remind me I had cancer, it is my fear of recurrence that makes it hard to feel better.

There are women with metastatic breast cancer who live ten, fifteen or even twenty years. “These long-term survivors are usually young, have excellent performance status, and have limited metastatic disease,” (Hortobagyi, 2002) but they represent only between 1% and 3% of cases.  My family and I have high hopes that I am among them.  As Jim and I joke, the odds are better than winning the lottery!  I have yet to speak with someone who has had a similar experience with limited distant metastasis and a complete response to chemotherapy, so at times I feel at a loss for what to think.

I was trying to articulate my perception of this phase of surviving at my Support Saturdays group (a Rethink Breast Cancer program).  I said something along the lines of, “I know I’m better, but I don’t feel better.”  One of the group’s leaders said to me, “What do you mean by better?”  And that’s just it.  To most people, you can’t get more “better” than NED – no evidence of disease.  And as someone diagnosed with metastasis, I feel almost ungrateful complaining about anything; I am so very lucky.  But I’m still recovering from the radical treatments that eradicated the cancer, and like my post-treatment peers, I complain about side-effects and changes brought on by the treatments and adjuvant therapies I still receive.  And then there’s the uncertainty.  I was explaining to my therapist the other day how it feels, “I’m like a kid in the playground who has had a hit to first base.  I’m safe right now, but there’s a long way to go before I’m home free, and there are a whole lot of obstacles in my way.”  I’m better, but I’m not the same. Because I’ve changed so much in such a short time, and I still feel plagued by uncertainty, I don’t feel like I’ve recovered.

This is not to say that a lot of things in my life haven’t actually improved.  I work way less, and play way more.  I don’t feel guilt the same was I used to. I care way less about what others think of me.  And nine times out of ten I choose my kids over work, instead of the reverse.  These things are better, most certainly.

So what I end up feeling is this odd blend of contradictory emotions that swing rapidly in and out of my heart.  When I am able to be in the moment, present with the people around me, I am better than I’ve been in years.  When I notice my ankle, swollen since chemo, feel the sting from the cracks in my fingertips that haven’t healed from the effects of the taxotere, when I can’t reach the cup on the second shelf of the cupboard because my right arm has lost mobility, or see my power port peeking above the neckline of my shirt, I am sometimes sad about what has happened.  And when I think too hard about the uncertainties of my future I am afraid.

Above all, surviving metastatic breast cancer to me means cultivating a way of living that allows me to have faith in my own wellness.  When I hear that word, better, it means a lot to me.  To feel better, I have to practice two lessons that one of my best teachers, David Hunt, taught me to do in 2002: let go and open up.  When I am able to let go of loss and fear and open up to replenishing hope, I feel better.  It is easy to say, and hard to do.  Right now, getting better is my job and my journey as much as it was during treatment.  I look forward to the day when I can look someone in the eye who asks me how I feel and say firmly and honestly, “I feel better.”

cancercamehome | Getting on with family life while getting better.

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