Reality Hits Home

Sometimes being positive is not enough. My family, friends and I had high hopes that the medication I was receiving in the Phase 1 Clinical Trial would help stop the the progression of my bone and liver mets. Unfortunately, it did not.

After being on the same medication for a year, my bone and liver mets remained stable. Then, in January of this year, my scans showed four new lesions on my liver. We were all thrilled when there was an opening in a clinical trial that I was able to participate in.  There was HOPE. Hope that these experimental drugs would work.

I went through two cycles on this trial, one cycle per month, or two months time. After the two cycles, it was time to have scans. Scans consisted of chest, abdomen, and pelvic CT scans, and a bone scan. I had the scans last Tuesday. The two days between scans and results can feel like an eternity, because so much hinges on those results.

Mark and I met with Dr. T, who is the oncologist for the clinical trial, on Thursday. After exchanging pleasantries, we received the upsetting news. The liver has new lesions and the current lesions have grown in size. It wasn’t all bad news though, the bone mets are stable, even slightly better.

Dr. T. and the nurse were a bit taken aback by the results. Why did the bone mets improve, but the liver mets got worse?  An oncotype test and a test on my liver tissue will be done to determine if a gene mutation is going a different pathway in regards to the liver versus the bone. Basically, are the liver and bone mets acting differently?  This test will indicate if a gene is using a different pathway and will help to determine which drugs will work best to halt the progression.

Now, off of the clinical trial, I’m taking an oral chemotherapy called Xeloda. I take three pills in the morning and three pills in the evening. I was given two other chemotherapy options, but I chose Xeloda because it comes in pill form, requires fewer trips into Boston, and I will not lose all of my hair, but it does come with some of the unpleasant side effects that all chemotherapies do. The team at Dana Farber was great in explaining the options.

Getting this latest news made me sad and frustrated. Reality sunk in. What if all the choices of medication left for me to try do not work? What if the cancer keeps progressing? I am not ready to give up and die. I am not ready to say goodbye to my family and friends. Not yet! 

Okay, I had my moment, time to move forward. 

I will remain on this new chemo drug for the next three weeks (and HOPEfully longer), then I’ll meet with Dr. M.  Dr. M. was my original oncologist when I was diagnosed with metastatic breast cancer, and who will treat me again now that I’m off of the clinical trial. I know I’m in the best hands possible, and together we’ll decide on the next steps.


14 thoughts on “Reality Hits Home

  1. Stay strong, mermaid and never, ever lose hope. There is a biblical passage that includes something to the effect of “we live by faith, not by sight.” I love that imagery because with faith, there is always hope. Have faith and keep moving forward.

    Liked by 1 person

  2. Even if no other meds work, I know you’ll be okay…you told me that months ago…of course, you’re not ready to give up and die, NOR will you, but you understand the reality of what you are dealing with, and know that one day, you won’t be here! I know people are going to read this and probably be pissed at me for saying that, but they shouldn’t be…you can fight and NEVER give up, yet the outcome isn’t going to be something anyone want to accept, but we must…and you, my friend, already have! That said, you are, indeed, in the best hands possible, and you aren’t going anywhere, just yet, my friend! You’ve got some more ass kicking to do, first! But more, importantly, you have life left to live!!! ❤

    Liked by 2 people

  3. Susan,
    I am a doctor & a daughter of a cancer patient, fairly new to “this side” of this world. I believe in God.

    Here is what I think: We physicians are endowed with talents & intelligence by our Creator who made you — perfect You. You are as beautiful now, with cancer, as you were as a baby. We do the best with medicine as we can, and it works and sometimes, it doesn’t. It is scary. But your hope & strength & faith are powerful beyond measure. What will you do? You will keep doing what you are doing – living, and loving.

    Yes, you are in good hands. Because, ultimately, you are in His hands, and He is holding you close to His heart.

    Liked by 1 person

    • Hi Lorraine,
      I met you a few years back. My daughter saw you for a heart murmer, which thankfully, is long gone. We also have many mutual friends. I enjoyed reading your comment, and thank you for reaching out. I consider myself to be more spiritual than religious. I always have hope and faith, and believe what is meant to be, will be. And yes, I will keep living and loving, and enjoying each day to it’s fullest. 😃

      Liked by 1 person

  4. I am sending prayers to you and your family Susan! Your strength and optimism are so inspiring to me. I have hope that your goodness and will to live can concur this. (As well as the work of all these dedicated medical providers working on your behalf). Bless you all.
    One day at a time!!

    Liked by 1 person

  5. Susan, I believe your positive attitude , faith & love & the support both emotionall & physical of all your family & friends will guide you through this difficult journey. You continue to inspire me & I am sure many others too! XOX

    Liked by 1 person

  6. Susan, I was very sad to hear the trial did not have the benefits you and your doctors had hoped. I wish I had a magic pill or words to make it OK. I hope knowing that you and your courage are a great inspiration to me and I’m sure all who share your story provides some comfort. We are all wishing you the best and sending you nothing but positive thoughts and love.


    Liked by 1 person

    • Lisa, the news we received was obviously not good, and not what we expected. I wish there was a magic pill to make everything better…..perhaps some day there will be. Your words ARE comforting, and I thank you. I hope next blog post I can report some good news! Take care.


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