The survivor paradox

Kristi with her daughter

As a long-time survivor of stage IV cancer, I feel I live in the precarious balance between hope and heartbreak.

This week was a perfect example. There are lots of reasons to be hopeful in my life. I’ve been feeling well and have had the longest winning streak since I started on chemo back in February 2008. I have been on the Afinitor and Aromasin combination for 17 months now and I’ve been feeling pretty great.  Sure I have some side effects – joint pain, loss of toenails, acid reflux … but I’m alive and it’s holding the cancer back and even reducing it.  I went in for a regular check-up with my oncologist and he said he told his medical student that she should see me because I’m a biological miracle. I know I’m lucky because the combo doesn’t work for everyone.

Of course, there is a small worry about it not working anymore. This comes up especially during scan time. But I just learned yesterday that palbociclib, a promising treatment for advanced ER-positive breast cancer that I’ve been keeping tabs on is being fast-tracked for FDA approval as soon as this summer. At the same time, I’ve been buoyed by all the amazing stories of people who are beating the odds of stage IV cancer that I’m sharing in my book coming out this fall.

Then there’s the heartbreak. This past weekend Kristi Sacksteder Frazier, a 35-year-old wife and mother of two beautiful young children passed away from stage IV breast cancer. She and her husband pulled strings for me when I was in dire straights two years ago so I could get in to see the head of the Ohio State breast center. A gorgeous family inside and out.

Then there was another young mother, Jamie Spring, with whom I was on Facebook. And then I heard about two others. The other night I tried to go through all my Facebook friend contacts to try to remember the name of another woman who passed away this year. I was her mentor through Imerman Angels, and I couldn’t even remember her name. I feel so terrible about it; like I’m a horrible person. But the sad thing is there are so many, that I’ve lost count. I’ve almost become numb to it all, probably how doctors train themselves to be. I think it’s a defense mechanism. Perhaps I’ve run out of tears.

So there’s the paradox — remaining hopeful and grateful despite the tragedy around me. There’s some survival guilt that I can be living so happily and hopefully when others much younger than me have not been given this gift. I never really understood survivors guilt as others have described it. It’s not that I feel guilty for being alive, but should I feel guilty for being hopeful and grateful? As I told another fellow survivor, the best we can do is to live each day to the fullest, carry on their legacies, and be the beacon of light for others who are still with us.

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