Sunday, July 11, 2010

The Other Side of the Spectrum

About 6 weeks ago, just as summer was getting started, I was diagnosed with breast cancer.  I started radiation treatments three days ago.  When I got the unexpected news, my first reaction was “You have got to be kidding me!”  I entered a free fall towards a plethora of stunned, confused and angry feelings; I truly felt as if I had absolutely no room in my life for yet another medical crisis. Taking care of Sylvie was enough.  

However,  my immediate health situation isn’t a crisis. It may have been 5 years ago prior to having my lovely twins and living with the daily reality of a chronically ill child.  But the type of breast cancer I have is non-invasive and is considered stage 0 on the spectrum.  I feel odd even talking about it, because ultimately with a little surgery and 28 days of radiation, I will essentially be out of the woods with this scare.  But overnight I became part of a national statistic: about 1 out of 8 U.S. women are diagnosed with breast cancer at some time in their lives.  I’ve joined humanity! I’m not dealing with an orphan disease that affects only 1 in 100,000 individuals.  I’m not making light of breast cancer, but this is not a death sentence I am dealing with.  Most breast cancer cases, if diagnosed early, are treatable--unlike my Sylvie’s illness, which has no treatment.

Additionally, I was stunned by the vast amount of information made available to me at my local hospital regarding cancer. In the course of 4 hours, I saw three cancer M.D. specialists, a psychologist, two nurses, and a representative from the American Cancer Society.  I was given a packet of resources the size of a phone book, and I have gotten follow up phone calls asking how I am doing.  This is in stark contrast to the one sole neurologist who had the lousy job of telling us Sylvie’s diagnosis three years ago.  He’s a great doctor and really helped us along the way as we tried to pinpoint why Sylvie’s motor skills were degenerating.   He hugged me and my partner after he told us that Sylvie had a rare and degenerative disease, but we basically were left to our own devices to make sense of Sylvie’s future and her medical situation. 

Dear Hopeful Parents readers, here is a true confession.  Sylvie’s dad and I have been somewhat glib when we go to functions for families with special needs, because sometimes we feel as if we’ve got it worse than anyone else—“Ha, your kid is missing a limb, well my child is going to die!”  “Ha, your child has tantrums—our child can’t even talk or walk, let alone scream and kick!”  I sometimes even think this when I read other entries on this website.  Ultimately this mental competition about whose child has it worse doesn’t make extreme parenting any more or less easy.  But when you are on the end of the spectrum where death is presented as the inevitable—such as those of us dealing with these rare and weird orphan diseases—it can help us cope temporarily.

But here I am, spending my summer getting my left breast radiated, and it’s not so bad.  I can’t say I’m filled with dread or fear or nausea, because my cancer isn’t aggressive and it’s a somewhat known entity in the medical arena.  I have the summer off, I live close to a high quality medical facility, I have insurance, and I’m spending more time focusing on exercise and diet.  For once in my life, I’m extremely grateful to be on the other end of the spectrum where things don’t look so grim. I’m up for this challenge and am convinced I will be a survivor!

When Kirsten isn’t taking her summers off to go to radiation therapy five days a week, she works as a professor of Communication Studies at the State University of New York and is the mother of 4-year old twin girls.


  1. Oh, Kirsten ... all my best to you!

  2. I'm really glad to hear that your cancer is treatable. Best wishes to you.

  3. You are and will be a survivor, and of course much more than a survivor. Stay strong---we are all wishing you
    a fast recovery.

  4. Dear Kirsten, I'm very sorry indeed that you have been diagnosed with cancer, but am so relieved to hear that it's "Stage 0" and treatable. You are brave, gracious, intelligent and strong. You have my prayers for an easy time with your treatment.
    As to your confession, I often have a similar feeling here, but in reverse. Since Katie has passed on, the immediacy of our "special needs" is not in day-to-day physical caregiving; it's emotional, spiritual and mental. I feel a bit like a light-weight when I think of the ongoing care that others here (including you) are giving your children; our time with that intense care-giving part of the illness was 10 months, not years.
    My compassion is with you over the "orphan" and life-threatening qualities of Sylvie's illness, as the type of cancer Katie had was both of those things, and I remember how hard that awareness is to live with. I pray that you will still enjoy a good summer with your family, in spite of this diagnosis, and that your recovery will be swift and complete.

  5. In Dutch, folks say "sterkte" -- "strength" to offer supportive and empathetic responses to others.
    As a parent I am often stunned by how much physical, emotional and spiritual strength it takes to parent and to live without falling and flailing and losing it, in the baseline setting without crises.
    So much more strength is demanded of you than most of us.
    I read so much strength through your words and it is inspiring. I hope you feel like you can draw upon the strength of your community, even those of us, like me, who are far away and know you little, yet gain so much from how you are in the world and hold you in our hearts and minds.
    peace and sterkte

  6. Kirsten,
    We now have something in common. I had a radical mastectomy in 1986. Have been cancer free since. Stay positive. That is the best thing you can do. Remember you are not alone. Sandy