A different kind of celebrate

IMG_6894Six more months until a big change!

As time has gone on and the oncologist appointments have gotten further apart, I have gotten more comfortable with living and being well. We went from scans alternating with blood work every six weeks, to 3 months, then alternating scans and x-rays every six months. Last November I asked if we could spread them out to a year and I got a big no for an answer. But that changed last Thursday.

My chest x-ray and blood work look good and I feel great, so I have my last scheduled scan in 6 months, then I will only see her yearly for chest x-rays. A dream I didn’t even dare to dream came true. My doctor cried, hugged me and classified me as a miracle. In 6 months I will be released to yearly check ups. Yes, I was happy, relieved and all that good stuff.

So many people said I must be thrilled and asked if I was going to celebrate. Yes, but it’s not like that; it’s not that kind of celebrating.

Last fall my newly licensed teenager got into a terrible single car  accident, completely totaling my SUV and taking out an electrical box. But the car didn’t flip over and she didn’t get stuck on the transformer; truly amazing. It is unbelievable that she could walk away unhurt. I think I walked around in a daze for weeks saying a gut felt “Thank you, Jesus” like it was a mantra. But did we celebrate? No, we were all completely traumatized. I’m still a wreck when she is out driving, and especially when the phone rings.

It’s a different kind of celebrating, maybe described more as a deep gratitude. There are no party hats or cake for either of us that says “Congratulations on not dying!” Somehow saying “Whoo hoo! Yay! You survived something horrific,” doesn’t quite seem appropriate. All we are saying to both is “That is incredible. Praise God.”

Mother’s Day was a little rough on the whole family yesterday, especially  on the older kids . I almost expected it. We have been living in such a heighten state that now that we can take a breath, the trauma of it all is sinking in. For years the Mother’s Day activities have always had a sadness to them because of  the possibility of it being our last with me here.  There was just too much pressure to make the day one of the best. I’m not sure when that got old, maybe it was around year 3.

It’s so common to have to stop and take a breath when someone finishes a round of treatment or even finishes treatment for good. I used to call it “sitting on a rock thinking about what to do next,” like Winnie the Poo does.

Metastatic Breast Cancer has no cure, but I have been NED for 5 years now. In 6 months I will be with the under 1% who “beat” it, we are too small of a group to even have a percentage. There are not enough of us to even be considered 1%, it’s only when I really press the top oncologist that they admit they have seen one or two of us. I am the only one my oncologist has seen and she has been practicing oncology for over 25 years. Coming in so far below 1% we can’t even form an “occupy oncology” group. I just need to sit on a rock now and think about what to do next.

16 thoughts on “A different kind of celebrate

  1. Wow. I get this. My journey began in August and I currently have no detectable cancer. You put into words what I have felt when people asked me if I was going to celebrate the most recent good news. I always say yes, but we don’t celebrate like they think. It is hard to say, ‘way to go me for not dying’. Thanks for helping me understand ME a little bit better. I did praise God on Sunday when I noticed that my name was removed from the official prayer list in the bulletin. I am well today. Only God knows about tomorrow. God bless you and thank you for your post.


  2. I get it, too, the celebrate – not celebrate issue. I have been living with metastatic breast cancer for over 12 years now. I, too, went through the different stages of spacing out the tests, to the point where we are not doing any routine PET scans. Alas, I had a PET scan on Friday and am now anxiously waiting to hear if my recent back pain is from some physical exertion gone wrong or if my cancer is rearing its ugly head after all this time.
    The fear of recurrence never goes away, even as we are hopefully making plans for a future we don’t know we’ll have.
    You are in my thoughts. Enjoy the moment and go ahead and make those plans, hopefully!


      1. It took me awhile to realize how scanxiety even manifested itself. One day, I realized that every time my scan appointment was coming up, I became more irritable and short-tempered. In my head, the good and bad scenarios were playing out in turns. This has essentially not changed. Once I recognize the signs, I acknowledge my trepidations to myself, my husband, my family and friends, whoever is near. I try to keep busy. I tell myself that the outcome has already been determined and that I will have to accept it and deal with it, whatever it is. I do yoga and meditations. I try to find out the test results as soon as possible, even if my doctor’s appointment to discuss the results isn’t until later.
        What is your strategy?


      2. I tried so many methods and learned what didn’t work. I also tried to get my scans as early as possible but then waited for the phone not to ring. I tried having a few extra drinks (made it worse), extra exercise and doing something fun with friends the day before the result appointment. (Hmm, maybe this will be a whole blog post (: )


  3. Amy, It’s so nice to hear from someone who feels the same fears and emotions that I do and have for many years. Our Mother passed away at 53 with breast cancer. I have finished 10 years of chemo, in February of 2015. The fear of recurrence also looms over me. Thank you! Thank you! Thank you, for saying our feelings out loud! God Bless you….


  4. I am happy for your NED status! Amazing and miraculous!
    I started my metastatic journey in March 2015. It started out with Doctor visits every 3 weeks. Then four weeks. I kept responding so well to treatment we stretched out visits and scans to larger and larger intervals. I’m on my first four month stretch and I’m having a rough time not worrying at every itch, bump and ache. I’m certainly glad that I’m well for the time being. I’m not in pain and I feel pretty good most days. That’s all I could ask for when I started out on this extended cancer journey last year. I try really hard to just be happy, and to not worry.
    But the wondering is the hard part. Hopefully I will be considered NED at some point, which comes with its own set of worries. Thank you for sharing your story. Hugs!


    1. Thanks, Kim! It took me a long time to “live like I’m living” rather than “live like I’m dying”.


  5. Thank you Amy! Think atop that rock on how Inspiring and hopeful you are helping us 99.9-percenters feel. You have given me hope. Thank you more than you could ever know. Hopeful is a great place to be.


  6. So many times I want to forgo treatment. This gives me hope that one day it is possible that one day I won’t need it not because I am too sick to tolerate it but because I will be well.


    1. Alicia, there were so many times I announced to my family I was done and didn’t think I would continue treatment. I think this proves it’s not a positive attitude that got me well. 😉
      Keep going, Love, as long as you can. You never know what God has planned


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