Thursday, April 16, 2015

Wait . . . what?

When I started this crazy cancer journey two years ago, I knew what was facing me. I knew the reality of what a Stage IV Metastatic diagnosis meant. Never to be cured. Which I have learned to accept. But, in Cancerland, there is this something that people strive for, hope for and dream of: NED. NED stands for No Evidence of Disease. A more commonly used word for those non-cancer patients is remission. NED means that there is no cancer detectable on your scans, but that cancer cells still do likely remain in your body. You could be NED or “in remission” for years, but you will never be deemed cured; cancer is a vicious little shit and could always come back. I can honestly tell you that the past two years I have prepared myself to never hear those words spoken to me.

I had my set of quarterly scans last week. My bone scan ended up revealing a fracture in my foot. Between chemo, hormone therapies, and other drugs to rid my body of cancer that past two years it has also weakened my bones and muscles. I am at a high risk for osteoporosis so they told me to get used to stress fractures, especially in my feet. Monday I was given an air cast boot to wear for the next 6 weeks. Yesterday I talked with my team about the results of my CT and bone scans . . .

                                               NO EVIDENCE OF ACTIVE DISEASE

Wow. I really just wrote that. I had to ask a couple times if they were sure if that meant that the scans didn’t reveal any cancer and what exactly did it mean if there wasn’t any they could see. Officially, they won’t give me the NED or “remission” status because they cannot say for sure that there is no cancer in my body. However, there are no tumors that they can see. The lesions I had in my bones are healing. When I asked if it meant I was finally NED doc said “It’s as close to remission as we’ll get”. And you know what? I will friggin’ take that. I’m not cured. I never will be, but, I don’t need it because I have something better . . . TIME. This means I have more time with my family.

So now what? Well, this changes nothing as far as my care is concerned. I will be on my Herceptin treatment for the rest of my life no matter what. I will go every three weeks and get that infusion. Herceptin stops the cancer from producing rapidly and is what has gotten me to where I am today. If I stop, the cancer comes back, simple as that. As far as my bones are concerned, the lesions where they previously saw bone mets are healing. Not having active cancer in them does not mean I can now run a marathon or be pain free. Cancer has greatly damaged my bones. I have been going to PT and exercising to help decrease pain. I will still go for quarterly scans for the rest of my life as well.

I am happy. I am sad. I am shocked. I am numb. I am angry. I am about a gazillion emotions right now. I was off of the Cancer Roller-coaster for a long time, now I am right back on it. I am happy that this has happened to me. I am sad that it hasn’t happened to others. I am numb to this feeling of having more time. I am angry that I have lost so many friends to this disease. For a long while I wished for good to come of this, and I never felt it did. I stopped wishing, and I started praying. I prayed and trusted. I let go and let God. I trusted that whatever He has planned for me will be, and in the end, it will all work together for my good, even if it brings pain and sorrow. If He blesses me with being able to say that I do not have any detectable cancer in my body for the next 5, 10 or 20 years then I will praise and thank Him each one of those day. And if one day, my cancer comes roaring back, then I will ask Him for guidance, strength and courage; and I will still praise and thank Him for each one of those days, no matter how hard they will be. 

I’ve done exactly what I set out to do, and I am going to continue to do it. I am gonna keep working on that bucket list, because, I know, life is short, so I am gonna live the heck out of it.


  1. And you have encouraged so many others to live life too! :)

  2. Amen ...beautifully written and lived ;) we have lots of things in common :) thank you for inspiring me!

  3. You are amazing.....your fighter-warrior-princess-spirit is inspiring!

  4. Praise God! You've been such an inspiration and God has heard the many prayers said for you! Prayer really works!! Time is precious - enjoy every minute!!!

  5. I'm so happy for you, Kate. This is a gift.

  6. So beautifully written, it made me cry. So happy for you. May we all have that kind of blessing.

  7. I recently had an amazing response to treatment. I have been going through the same whirlwind of emotion. <3 Yay for the news!