My regimen(t)

Jan 15

It’s about that time: I’ve been on this drug combination long enough to understand how I feel and to get into a routine.  I’m on Herceptin (infusions through my port), Faslodex (shots), and Ibrance (oral pills); I like that these three are all administered differently: as I visualize cancer being destroyed, I like that I have a variety of pathways of attack.  I liken my regimen to my regiment: warriors for good.

This combo is treating me really *really* well; I feel better than I have in two years.  Last winter I spent most of my days in bed, and this winter I have dusted off my recipe box, dumbbells, and bookshelf.  In a potent way, it feels like I am also dusting off my brain and my body: I’m asking both of them to function in arenas that I haven’t attempted in — literally — years.  One example is how different this holiday season was for us: Brad and I did the math and figured out that we served our combined families three hundred meals over eleven days when we hosted them back-to-back in December.  It is a big blessing to have the energy to serve; I’ve missed it.

In seasons where I am sick from my treatments, I have spoken about the things that I give up: everything from cooking for my family to being in shape, from having a job to volunteering at church.  I’ve given up a lot.  I’ve also spoken about the blessing of this process: I have had the privilege of evaluating and holding on to only my most dear priorities.  I’ve had to pare down to the core essence of Jen, and fight for the things that make me feel the most alive.  I never do anything because I ‘should’.  Few get to be as fiercely intentional with their most valuable resource (time) as I do.  I get credit for this, as does Brad, and my entire village for helping us with a level of commitment that often overwhelms me.

Now in this season of betterness, I feel I’ve gotten to pause and look around at the treasures at my feet and decide which ones I am going to pick up.  Ironically, I shed tears in this process because I had to mourn the losses before I could reclaim them; some were losses I didn’t notice until I had capacity pick them up again.  In the past few weeks, I did things I didn’t anticipate doing: I researched and wrote a research paper, I cleaned out a closet, I decluttered the storage room.  I claimed things back that do matter to me: I’ve had lunch with the girls at their schools, I volunteered for class parties, I wrote some thank you notes.  And. to be clear, I still have people coming to help me: they clean and help me keep up with house minutiae.  I still say yes whenever someone wants to make us a meal.  I still receive far far far more than I give.

Every time I have a scan, there is always the hope that I will be NED (No Evidence of Disease).

Every time I have a scan, there is always the fear that I will have cancer everywhere.

The duality of this dance, the hope and the fear, is a powerful experience to live through.  I find the sweet spot is not in the hope, as you might think, it is right in the middle: feeling the fear, feeling the hope, and choosing to hope in spite of the fear.

It doesn’t really get easier, but it does get more familiar.  I’ve likened a bad cancer medical appointment to a violent car crash. You walk out of the exam room (or the mangled car), in shock about what in the hell just happened.  However, by the time the twelfth car crash happens, you know you need to follow the steps, that life goes on (today, anyway), and that there is still a lot of one-foot-in-front-of-the-other processes to carry out.

With each quarterly scan, I hope for healing, health, wellness, and all the good things.  My experience has been that most of my scans have shown progression of the cancer, which is, well, bad.  I have only had two scans that showed regression/stability, all of the others (maybe a dozen?) have shown progression.  As I began anticipating this scan, the one that will determine whether I will stay on this treatment or whether I will move on to yet another one, I found myself more invested in the result.  I am feeling so good that I don’t want to change treatments.  I am nervous about side effects of what is next.  It feels like a bad scan would be doubly bad: I have to stop a treatment that is giving me good quality of life AND I have more cancer.  Ugh.

Even with all this explaining, you probably still can not imagine my delight when I got the news that I do get to stay on this regimen because I am stable!  The PET scan imagery showed a mixed result: one lung spot that is stubbornly bigger (progression), but several other tumors that are smaller (regression), and more that are stable.  Dr. Wonderful decided that if my Cell Search test (the one where they look at a drop of my blood under a microscope and count the cancer cells in it) came back less than five, then I would stay on Ibrance/Herceptin/Faslodex.  The Cell Search test came back today: zero!  0!  So, with no circulating cancer cells in my blood, and a net stable scan report, we are taking this for a big win.  I’m staying on this treatment, and I am rejoicing.

This feels like yet another miracle in my life.  How many does one person get?  Let’s all remember that I’m on Ibrance even though it is not  FDA approved for my type of cancer.  (Thank you again Pfizer for granting me compassionate use!)  Isn’t it another interesting plot twist in the story that this drug is one that is working?  Or maybe it’s not and and it is all the prayers of people who pray for me and God’s mercy.  I can’t explain it, but — golly — I sure am reveling in it!

Tonight I’m wearing my Snow Day sweatshirt and hoping for another snow day for the girls tomorrow, drinking tea out of my Happy mug, wearing cozy socks, and dream-planning with Brad.  I am doubly grateful for less cancer and a very tolerable treatment regimen(t).

Thank you for sharing our burden and our joy.

48 comments

  1. Happy Dancing and Dreaming of more good news

    • Denise /

      Loving your news – giving thanks and toasting you tonight. Love always

    • God bless you and your family and keep all of you strong.

    • Sharon House /

      Wonderful, wonderful news on the new combo! As for the rest? You never cease to amaze me. What strength of character, faith, positiveness you have, and you never seem to miss beat.

  2. That is AWESOME news! What a great way to start the year!

  3. Tears. So grateful to hear your news. Thanks for sharing.
    Love to you,
    Kay

    • How wonderful, Jen!! So happy about the strong news!

      Xoxoxo, Jules

  4. Ginger /

    Awesome news Jen😍

  5. Diane allen /

    So so so happy for you. I read every one of your posts just praying and hoping for positive results. Woohoo!!!! You go girl! 😉

  6. Wow!! Such good news for you and for all of your community that love you and pray for you. What an extraordinary thing, to be blessed by a miracle and to be able to share it in the way that you do. I hope you get another Snow Day!

  7. A very happy read , praise God! And I saw on Twitter you have a snow day❄️

  8. Sorry…. DELAY🙃

  9. Such awesome news! And a wonderful post to read! Enjoy your snow day!

  10. Lisa Marker-Robbins /

    I held my breath from the time I saw this in my inbox, as I began reading your words, until I read words of joy and breathed and celebrated with you! SOOOOO fantastically happy and relieved for you 🙂

    What drove home to me the most is that in every scan I’ve followed from the beginning there really were only two with regression. WOW. That’s the big picture of your journey. And with this you are STILL here, STILL LIVING and living better today than you were a year ago. Praise Jesus!

  11. Kim Rourke /

    Hooray for snow days, cozy socks and steaming tea AND scan results that help you (and us) keep hope in the foreground!

  12. Newbie Friend /

    This is exciting news! So happy for you!!

  13. Love this…choosing to hope in spite of the fear! ♡

  14. KellyE /

    Wonderful news! Continued prayers of gratitude and hope!

  15. Debbie /

    What lovely news! I’ve been praying for you for a long time. Your positive outlook on life always encourages me when I feel discouraged. There’s a young lady our family spends a lot of time with. She’s going through some really difficult things. I loved what you said about choosing to hope instead of fear, while allowing yourself to feel both. I’m going to write down that whole paragraph and share it with her. Beautiful words.

  16. So So So VERY HAPPY for you and yours!!! XOXOXOXO Beth

  17. Wonderful to hear!

  18. Ann scherma /

    PRAISE GOD! Extremely happy for you, Jen. You are so courageous! Enjoy your snow day with the girls! 💕

  19. Marlayne Skeens /

    Happy Tears of Joy ❣️Rejoicing ✝️ 😊 🌈 ⛄️ ☕️ 😊

  20. Thank you for posting. I am so happy to hear you are stable! Maybe your results will change the way Ibrance is used and help other women. Hugs and love to you and your family!!

  21. Julie Talford /

    Wonderful news and I love the way you express it….right from the heart. We thank you for the mail. Your photo was placed where I see it often in my office. We both lived Greta’s story. Hope to see you in 2018! You always inspire me …xoxo. hello to the family!

  22. Jean Fennema Vanderzee /

    You have come to mind so many times recently, and the thoughts are followed by prayers. What a wonderful gift to hear the way God chooses to answer prayers that only contain your name… no specifics. He is so gracious to know exactly what you needed. Joining you in celebrating.

  23. Kathleen Roth /

    ❤️❤️❤️❤️

    • Lisa Smith /

      Selfishly, I needed this great news today. Thank you for continually sharing and inspiring me. Love you. xo

  24. Oh what wonderful news!!! I admit I had anxiety as I was reading through, praying for good results!! Can they remove the stubborn spot on your lung? So glad that things are more tolerable for you. Love and prayers!!
    Lisa

  25. Bonnie B Jackson /

    Such Wonderful Wonderful Awaited news!!! Since I heard about the additional test I’ve been praying!! Thank you Jesus!!

  26. Lori6NV /

    Been waiting and praying for this update! Great news! Especially that you’re feeling well!

  27. Kristin Russo /

    Loving all the good news! 🙂

  28. Jeanne /

    This is such great news, Jen! What a blessing that you get to live your life on your terms with the help of these drugs, prayers and support of your family and friends. We love you.

  29. Fran Brock /

    Jen so happy to hear ALL of your wonderful news.
    I am in Florida sharing your story to all my friends down here.
    Several are from West Chester.
    Such a delight to hear from you.
    Keep writing.

  30. Such fantastic news!!! Love all that you are and exactly how you share yourself with us. So so happy!

  31. Christin /

    Incredible. Absolutely incredible. And! I know your girls got a snow day!!!!! Woohoo!

  32. Praying, Praying, Praying. 50 Years!

  33. Tiffany Nabozny /

    PRAISE THE LORD!!!!❤️❤️❤️❤️❤️😘😘

  34. 💕💕💕. Happy dance in Avon!!

  35. Rebecca /

    Love. ❤️

  36. I’m still gitty!!!

  37. Rejoicing with you my fellow warrior sister.
    Love you.

  38. Your good news has me smiling today, for you and your beloved family. Praise God!

  39. Genora /

    Jen, as I read your blog, tears of joy and gladness overwhelm my heart and soul. As I anxiously scrolled down to give my replyI was so happy to read All of the names of people who love,care and are praying for you. Your blog is Such a testimony to your faith and the goodness and grace of God. So many words you refer to constantly that are Gods nature,Wonderful,Compassionate,Miracle Worker,Merciful,Caring, Kind and Faithful. Just want to let you know I admire your strength, courage and determination! Keep walking in your good and strong faith walk. Be encouraged and stay strong! This is My prayer for you and your village. Steadfast, unmovable abounding in God’s grace! Always!!! Luv U.

  40. That is really really good news! So happy for you that you feel up to doing more of what you love.

  41. Jennifer /

    Inspired by your strength in burden and in joy. Prayers for many more years of dream-making — keep those miracles coming! Will choose to believe the healing is in the prayers for those are certain to continue.

  42. Wonderful news, Jen. Love to you and your sweet family!

  43. Hooray hooray!! And can I tell you how much I love getting your Christmas card especially since I knew how much effort it must have been to do them. Glad to hear you are feeling so amazing!