Marisette Edwards-van Linden van den Heuvell

On surviving cancer 30 years

gift of timeRight now I’m trying to peel myself off the ceiling again. I just forgot once more and bit down on the molar that had a root canal 6 days ago. Whenever I feel a shock of pain like that, I take it as a reminder that I’m alive. That was not at all expected thirty years ago.

Late in 1985, I was 25, happily married, and 23 weeks pregnant with my first child. I got in the shower one morning, looked at my right arm, which had been sore without apparent cause for several weeks, and saw a lump near my underarm. That was when the nightmare began. I was diagnosed with a rare form of cancer, sarcoma, that had the potential to kill me, but the tests that would tell for sure couldn’t be run on a pregnant woman. Every moment of the next 12 weeks was devoted to survival – my survival and that of my baby. At 35 weeks I was done with surgery and radiation therapy, and lucky to still have my right arm. I was considered almost full term and needed to start chemotherapy, so labor was induced and after 44 hours my baby was finally born, a beautiful girl of nearly six pounds. She should have been fine. But she wasn’t. During labor, a Group B Streptococcus infection had invaded my uterus, making me seriously ill, and overwhelming the immature and stressed immune system of my premature baby. By the evening of the day she was born, my daughter took her last struggling breath.

Instead of having my reason to live in a basinet beside me, I had to face chemotherapy in a fog of grief. In all of the time I was fighting for my child’s survival, I had been afraid that I would give up if I lost her. Faced with that reality, though, I found that overriding the grief was a strength born of anger: I would not let this beat me. If I spent the next five years waiting to see if the cancer would come back, I wouldn’t be living. I’d be waiting to die. I wanted to live.

I endured the chemotherapy for six long months. At the end of chemo, I walked out of the oncologist’s office with 1/4″ of hair and his reluctant blessing to try for another baby, if I must, after 3 months of being free of chemicals. That was at the end of August. By January, I knew I was pregnant again. In October, I had a healthy, 9 lb 8 oz boy. Nearly three years later another son came along. I was hoping for a girl, but no one meant it more than I when speaking the words, “I don’t care what it is, as long as it’s healthy.”

After five years, I was pronounced cured and didn’t have to return to the oncologist’s office. After seven years, I was past the point of time that anyone with a sarcoma was known to have a recurrence. Any cancer after this time would more likely be originated from the treatments I endured than the original disease.

Around this time, when I should have been starting to forget the experience, people in my life started dying from cancer, most notably and agonizingly, my mother-in-law and my mother, both still quite young and vibrant. I was plagued by survivor’s guilt.

The millennium came and went, and one day I realized I had never made plans beyond the year 2000. It had not occurred to me that I would need to.

It’s never far from my mind that I have been granted this beautiful gift of time. I’m plagued by the question: Am I spending it right?

My perspective must be affected by the experience of facing death, not only my own but that of people I dearly loved, and then finding myself alive… still. There is a constant tension between all the things I feel I should do in order to make the most of this time that I’ve been granted: enjoy the moment, but also make the best of it; work hard, but make it meaningful; relax, but don’t be a slug; have fun, but accomplish something worthwhile; be generous, but don’t get depleted; sleep enough, but do as much as possible each day; be healthful, but don’t obsess; be grateful, but don’t be satisfied; be kind, but also assertive; relax with loved ones, but strive for goals; plan for retirement, but don’t pass up today’s opportunity; get pampered, but don’t get lazy; commit, but don’t get sucked in; be responsible, but accept help sharing the load; trust but prepare; respect and be respected; figure out what is really important and go after it. And then there’s my younger son’s advice: do something terrifying every day.

I still find it difficult to make long term plans. This is the year that I begin to outlive my mother. It’s also the year that my daughter would have turned 30. My sons are grown and have their own lives. I lead a more or less normal existence, working and socializing, and rowing competitively with the crew team I discovered at the beginning of the millennium. The scar on my arm reminds me that the outward appearance of normalcy is hard-won. I still struggle with survivor’s guilt. I have so much I still want to get accomplished. When I think that I am now the age my mother was when she succumbed to cancer, I just cannot imagine having to give up on life with so much left to experience. Every day I try to find the balance between enjoying today’s sunshine – because who knows if I’ll experience another day like this – and working hard to accomplish the many goals that I feel an urgency to achieve before it’s too late. I’m always trying to live each day so that if it turns out to be my last, I have no regrets. Sometimes it feels like a relentless pressure.

The one thing that I did learn from all of it was that worrying never made a difference. Whether I worried about something or not, bad things happened and good things happened. The energy I expended on worrying was completely wasted either way. I still can’t help myself sometimes, but I’ve gotten pretty good at letting go the worries and just experiencing life as it happens. Maybe, in the end, that’s a good enough way to spend my gift.

8 thoughts on “On surviving cancer 30 years

  1. Kristi

    Thanks Marisette. It gives me good insight into Alex’s journey. We lived through the devastation of his diagnosis, the agony of treatment, the joy of remission and now are entering the fears of late effects. Thanks for sharing your intimate thoughts. I lost a baby after a car accident and have always wondered, after 4 boys, if that was my girl. ❤️

    1. Marisette Post author

      Oh, Kristi, the more I tell my story the more sad stories I hear from others. And inspiring ones. I hope you and Alex and all the boys are doing well. ❤️

  2. Joanne van Linden

    I’ve heard this story from different perspectives over the years, particularly from your dad, it is good to see it all in one place and from you, who lived it. Your story has changed how I look at my own life.

  3. Kylie Jones

    Your story is a very moving one Marisette. I look forward to reading how you spend the next ten years and the ten after that. Take care ?

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