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.

This entry was posted on Wednesday, May 21st, 2014 at 1:29 PM and is filed under Emotions, Gratitude, Medical developments, Purpose. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

8 Comments

  1. Lori T. Schulte says:

    Perhaps the best thing you can do….is to just awaken each new day appreciate the gifts that day brings. Choosing to live your life in this way honors all to whom cancer cut their lives short! TAKE NOTHING FOR GRANTED. LIVE FULLY ALIVE TODAY!

    ... on May 21st, 2014
  2. tamilb says:

    Great advice for everyone, Lori! Thanks!

    ... on May 21st, 2014
  3. heidi bright says:

    Tami, your survival gives others more hope, and hope is such a precious experience in the midst of the terror of cancer. Everyone has a path to follow, whatever the outcome, and I believe there is a reason for it all, even when some survive and some don’t. Keep shining your light!

    ... on May 21st, 2014
  4. tamilb says:

    Thanks so much Heidi! I don’t plan on stopping what I’m doing anytime soon! :)

    ... on May 21st, 2014
  5. Marina says:

    Great post. I often struggle with the same feelings but then look at my kids and remember why I am here and that I have to keep on plugging on! You’re definitely my inspiration!

    ... on May 22nd, 2014
  6. tamilb says:

    Yes that’s why we’re here Marina! Keep on keeping on!

    ... on May 22nd, 2014
  7. Cathy Scibelli says:

    This post exactly describes the roller coaster that living with Stage IV cancer puts us on. I get great news from a check up and feel on top of the coaster, then come home and find out that two friends who were a real inspiration to me when I first started my MBC journey have both passed away recently and I plunge into the depths again. Then I hear from another friend who has been living with MBC for 8 years and just came back from an invigorating trip abroad and the spirits start to rise again and I start thinking I can’t give in to the fear and the uncertainties, I have to keep living each day to the fullest.

    And I agree with those who commented that the best way to honor our friends who have passed on is to continue to enjoy our lives and to be an inspiration to the women who are newly diagnosed. And if it’s any consolation, when I was first diagnosed the most comforting and supportive thing I found to get me on a positive track was your first book. So don’t feel guilty, believe there’s a purpose in your survival and keep plugging along…..

    ... on May 27th, 2014
  8. tamilb says:

    thanks so much for sharing Cathy, and for your support. It means the world to me that my book helped you!

    ... on May 27th, 2014

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