On outliving the statistics …

General 3 Minutes

June 27, 2017 was the day that we learned for sure that I had Stage IV Metastatic Breast Cancer (MBC). It was the conversation where my medical oncologist at the time (he since retired) said that instead of cancer being something that I wouldn’t die from and could be curable, Stage IV meant that there was no cure and the cancer would eventually end my life. I’m not sure I will ever forget that appointment and so much of what came after.

Today is the 6th anniversary of that conversation.

On this sixth anniversary of that conversation, I am taking some time to ponder about what has happened over the last six (6) years of living with MBC. Here’s some interesting tidbits (at least to me!) …

  • After completing the initial IV chemotherapy combination (Adriamycin and Cytoxan), I moved into targeted therapy. I’m presently on the 5th line of medication since that initial chemo. That means I’ve had approximately 28 monthly cycles of Ibrance and Letrozole, 33 monthly cycles of Piqray, 29 monthly cycles of Kisquali, 42 sets of monthly Faslodex shots (one in each buttcheek, so 84 shots), plus those loading doses, 4 monthly cycles of Verzenio, 6 IV infusion treatments of Taxotere, 22 cycles of Xeloda (I think, changing the dosage schedule gets confusing), 47 infusions of Zometa, until I developed osteonecrosis of the jaw, 19 PET scans (next one in September), 8 brain MRIs, multiple back MRIs, plethora of x-rays and CT scans for one body part or another, hundreds of doctor visits, 1000s of vials of blood taken, two blood transfusions, about a dozen Neulasta injections to boost WBCs, one iron infusion, a plethora of electrolyte infusions, at least 5 hospital stays lasting longer than one night, 5 different surgeries (I count surgeries as being those times I’m totally out due to anesthesia), four different biopsies while I was awake, and all of this occurring in 9 different hospital systems (attributed to moving and also getting second opinions).
  • I’ve seen more than 22 different medical specialists over the last 6 years outside of medical oncology.
  • 2023 is the first year that I didn’t meet the out of pocket maximum for the year under our insurance in either January or February.
  • One hospitalization for sepsis in 2022, which has has lingering and long lasting affects.
  • Lost my hair twice and it’s grown back different each time. Currently in the weird mushroom-looking time of growth.
  • 3 different rounds of Physical Therapy to address healing after the rod surgery, but then also heterotrophic ossifications that developed in my thigh muscles.
  • Hundreds of massage, naturopath, chiropractic, myo-fascial, cognitive therapy, speech therapy and acupuncture appointments.
  • Six (6) tattoos.

I’m exhausted just typing all of that out and I’m sure I’ve forgotten something or more than one thing. It’s hard to articulate the effort I’ve spent over the last 6 years to engage with my various medical teams and get second opinions so that I could make the best decisions. I’ve had the opportunity to engage with truly amazing professionals and struggled with those who didn’t have the ability to communicate well. The complexities and vagaries of the medical system we have here in the US means that to get good care, I have to put in a lot of energy and effort.

I didn’t really understand the term “medical gaslighting” until I had to communicate symptoms and ask for real solutions, as well as communicating how potential “solutions” weren’t a solution for me. I didn’t really understand the “gaslighting” and “grief tourists” until people I thought would show up, didn’t, even after they said they would. I didn’t understand how much it would hurt to watch people walk away from the possibility of a relationship with me. I didn’t understand how the capacity of others to handle suffering would affect me — and by this I mean that the capacity for others to actually enter into relationships with those of us who are suffering is so much less than I thought.

Outside of that required effort to simply stay alive and on top of treatments, etc., is the toll that has come with outliving those statistics about life expectancy with MBC. That toll includes all of those people who we lose every day. By entering into the MBC Community and working with and supporting others who are living with MBC, that means I lose people who have become dear friends all the time.

It’s been a lot over the last 6 years and while I am absolutely grateful that I’ve outlived those statistics we know about life expectancy with MBC, it isn’t easy.

So, here’s my ask of all of you today on this anniversary of my MBC diagnosis. Consider how you could reach out to just one person who is struggling/suffering right now or their caregiver(s). A card, a text, a call, an email … something. For those of us who live with our trauma, day in and day out, others often forget about that daily slog. Take a moment and reach out, make a connection, tell someone you are thinking about them.

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Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

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38 thoughts on “On outliving the statistics …”

  1. First of all!! I am so very happy to know and love you!! I am sorry we met at Bethany’s funeral, but you have helped me in sooo many ways. I know that you are tired and I support all that you do for soooo many, but today do something that makes you happy!!! Eat some chocolate, sing out loud, go to a park, feed the birds, or ducks. Have lunch with someone you love!! For today YOU are here!!!!

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      1. Just had to share those baby calves and their moms!! Keep on keepin on!! I hope you smiled!!❤️❤️❤️❤️👵🏻👵🏻👵🏻👵🏻👵🏻👵🏻❤️❤️❤️❤️❤️

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  2. Abigail
    You are the best at putting thoughts on paper. Wonderfully written. I am 4 years out and because of my situation, or because she is just mean my former pa keeps telling me I should be dead already. Well I’m at Duke now and I have fired Mr orevous team. It was time. There is nothing they could offfer me especially hope which we all need. Many more anniversaries to you. Karen

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  4. This wrenching post is so Abigail—at once analytical and moving, and always tying your own physical and emotional struggles with a plea to us all to be kinder and more supportive to others. You’re a treasure, dear Abigail. I hope you’ll take Connie Reeb’s advice and indulge yourself—not just today, but as often as you can.💐

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  5. I just had a little prayer session with the Lord for you yesterday. I’m so grateful He brought you into my life. I thank Him for sustaining you, for every moment you are able to spend with your precious husband and sons, for the way you are touching and encouraging so many lives and the energy and cognitive ability all that takes, and I continually ask Him for more days, for more of your kiddos’ milestones, and for His presence to be known by you.
    Love you dearly ❤️🙏❤️

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  6. Abigail, I will continually look to you for affirmation and guidance that we must encourage cancer patients, in whatever way they can, to be their own strongest voice. You exemplify that with your concise words in your writing. If you have inspired one cancer patient to do that today, the energy and heart you put into this blog was 100% worth it. Grateful to call you my friend.

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  9. Hi Abigail,

    I am so glad you’re still here! As you so succinctly laid out, you’ve been through so much. And yet, on the anniversary of a day you received horrible news, you are encouraging us to think about others and to reach out to someone who might be hurting or feeling tired and alone. That says a lot about why you are so loved and appreciated in this community and beyond. Besides all the sage wisdom you share here on your blog and elsewhere, you’ve got a big and beautiful heart.

    Here’s wishing you many, many more years, my friend! x

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  10. Abigail, May the Lord bless you and watch over you; the Lord make his face shine upon you and be gracious to you;the Lord look kindly on you and give you peace’ In Jesus name, Amen X

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  11. I’m so glad you’re still here! ❤️ 🙏🏽❤️ May the good keep lasting so much longer than you ever imagined and may the hard parts be as tolerable as possible! You’re such a beacon of hope and strength for so many others!

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  12. Wow Abigail…that’s a lot and I thought I had a lot with my breast cancer stage 3A since 2001. I’m so grateful you’re still here and able to write and to inspire others through your journey. Sending huge healing hugs. xoxo God bless…I’ll keep you in my prayers

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  14. Thank you so much for sharing all that it has taken to outlive the statistics. Many of we survivors may have a future that looks very much like yours. Science has helped us live longer but cancer has figured out how to resurface for a 2nd act. We have someone like you to instill courage and perseverance, as life is a gift and worth the fight. I am sending you a hug filled with gratitude and admiration.

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  15. Dear Abigail, your wisdom, knowledge and skill helped change the course of my life in 2010, before your cancer diagnosis. Since your diagnosis and your choice to be actively transparent about the realities of living with a terminal illness, you have inspired, challenged, humbled and exhorted me, both as an individual and as a Healthcare provider. Thank you. Who knows how many lives you have touched and changed, in the midst of your suffering?? I am praying that you receive the emotional, physical, and spiritual support that you need and deserve, each day. Grateful for you!

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