And it Continues …

General, Medical Updates 5 Minutes

Whelp, I was planning to take a break, to regroup, and to re-evaluate a lot of things, but I’m back with a medical update. You might remember my post from January (Updates from the MBC Rollercoaster) about how my tumor markers were rising and the scans showed uptake, but my team was convinced those results were due to the inflammation caused by the immunotherapy clinical trial I was in. I had agreed to stay in the trial when all of this was going on with the caveat that I would be scanned more frequently and I’d asked for a PET scan. The clinical trial didn’t utilize PET scans to evaluate the participants and since I’m used to interpreting and relying on the results of a PET scan, I asked for one.

Last week was my 6th cycle of the clinical trial and the PET was scheduled in the midst of that treatment week. There was yet another snafu with the trial meds (oh the stories I could tell about all the issues) and the PET was shifted around, so I was sitting in the chair in the infusion room during my observation time after being injected with the experimental T-cells when my doctor called me on my cell. Getting a call from an oncologist less than an hour after a PET scan is almost always bad and getting a call before I’d even started repeatedly refreshing the portal to review the results was really bad.

The news she gave me was that I’m experiencing the worst progression since my de novo Stage IV Metastatic Breast Cancer (MBC) diagnosis in 2017 and the trial was a spectacular failure.

Now I’ve ridden the rollercoaster of emotions since that call, but the first thing I felt and thought in that moment was “I knew it.” Yes, immunotherapy is different and the contrast/tracers utilized in the various scans react differently, but I’m pretty good at spotting patterns and I’ve been watching various data points like a hawk on steroids for the last nearly seven (7) years. When I raised concerns and was dismissed over and over, I began to doubt myself a little. I tried to take in what the health care professionals were telling me and adjust my expectations, but it turns out, those data points were telling a story that everyone needed to pay attention to.

Once the dust settled and I was able to breathe a little, I contacted my local oncologist to get the ball rolling on the next line of treatment, my 7th. You see because I was pretty convinced that the trial wasn’t working, I’d been working on all the elements necessary to begin my next line and so this week I will begin an IV infusion of Enhertu so long as the prior authorization is completed in time (don’t get me started on all the roadblocks that occur so often). I’ve gathered lots of information and I feel pretty ready to see what side effects show up for me.

Given that Enhertu is my 7th line of treatment in less than seven (7) years of living with Stage IV Metastatic Breast Cancer (MBC) and I’m literally running out of treatment options, I think it is important to address how yet another progression affects quality of life for someone like me. Just as a reminder, generally, those of us with MBC are able to continue living with this terminal diagnosis while we have treatment options available to us and typically, once the cancer grows (progression) on a particular medication, that medication is no longer available because the cancer knows out to outsmart that medication. So, running out of treatment options means death is that much closer and since we watch our compatriots die at a rate of over 100 people per day in the United States, we are uniquely aware of what our future likely looks like. Balancing the reality of living with a disease that will end my life (a/k/a terminal) and outliving initial and updated statistics on the likely length of my life with some semblance of hope is REALLY FREAKING HARD.

REALLY FREAKING HARD.

As I dealt with the reality of this recent progression, several people asked me how I could continue to have hope when I’m getting less and less time on each line of treatment. They know, I’ve seen this pattern and I know the outcome. I’m not someone who looks away from reality and sometimes I long for those innocent days of not knowing what is coming, of living without this knowledge that my time on this earth isn’t as long as I’d like. And I didn’t have a good or complete answer for any of them.

A part of the answer is that I don’t have any other choice, that these are the cards I was dealt, this is my reality, and I’ve made some amount of peace with it. A part of the answer is that I’ve built up some amount of courage/resilience/bravery along the way. A part of the answer is that I’m surrounded by other people who get this experience uniquely because they are living it alongside me, with me, and we prop each other up every time one of us stumbles. A part of the answer is that I have done and will do just about anything to remain in my children’s lives as long as possible. A part of the answer is that I’ve found a sense of purpose among the pain and struggle. A part of the answer is that I know that I am loved by a God who knows the outcome. A part of the answer is that I’m literally the most stubborn human being alive and hold onto all pieces of hope available. A part of the answer is that I’m gotten better at ignoring/compartmentalizing/looking away from the hard things to focus on being present, now, with the time I actually have.

There isn’t an easily identifiable sum among all those parts, it’s both all and none of those things, all at once. As I often do, I turn to the writing of those who have gone before me in this MBC experience and Dr. Anya Silver‘s poetry feels like a trusted friend in times like these. She also lived with MBC and knew many others who walked that path alongside her and her poem, “Aren’t we all so brave?” from her book of poetry, “I watched you disappear” is one of my favorites.

And so my conclusion is this, we are all human and together, in community, we can do hard things. My community is rising up around me and allows me to reclaim some hope in the midst of this relatively dark reality. And I can handle this next hard thing, one breath, one minute, one hour, one day, one treatment at a time.

And for that, I am profoundly grateful.

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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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40 thoughts on “And it Continues …”

  1. My dear friend Abigail: I put the phone down to weep about your scan results…then picked it up to continue reading your remarkable post. You continue to inspire and teach me as only truly great and gifted people can, and you are helping me deal with my own far less invasive concerns. You are my Wonder Woman, and I am with you always. 🙏💕

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  5. My heart is heavy for you but my spirit is lifted by your stamina, perseverance, and downright stubbornness. So grateful for our God who holds you in the palm of His hand. Praying for His mighty work in this next line of treatment, giving you more precious days with those you love so dearly.
    🙏❤️🙏❤️🙏❤️

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  6. Dear Abigail, not sure where to begin, I’m so incredibly sorry to read about this. Praying for you and your family, for comfort, for hope, for peace that passes understanding, for time xxx

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    1. Thank you, my friend. It does get harder and harder to know what to hope for, what to pray for, what to ask for, but time is certainly always in the mix. Just good time, not always the length of time. Such a moving target. Love to you.

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  7. Thank you for sharing your journey . You are helping so many more of us than you can imagine! The poem was very beautiful. Sending love with so much gratitude to you.
    Maxine

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  8. I am so sorry the trial (which trial?—interested because I’m looking for one, and I’m keeping an eye on immunotherapy for HR+ disease) hasn’t been working. (I had hyperprogression from experimental immunotherapy with obdivo and yervoy several years ago.)
    I hope you get a lot of time on Enhertu.

    I am not questioning, but asking: if you believe in god and feel he’s somewhat involved in all this, why are you so distressed? I totally get the distress—I am permanently freaking out—but I’m an atheist. (If this question is too personal or an answer ineffable, no worries. This is clearly not an area of rationality, so contradictions abound.)

    As for the poem, I do not believe we are brave. Courage requires choice/options, and we don’t have any.

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    1. Here’s some info on the trial I was in: https://www.onclive.com/view/bria-imt-plus-retifanlimab-continues-to-show-early-clinical-benefit-in-advanced-metastatic-breast-cancer. I wrote about it a few times, so you can look back at prior posts too. It is a complicated trial (sometimes I think it might be too complicated for true widespread use) but some people are getting good responses. Wasn’t in the cards for me. But I am told that others who have progressed and went onto Enhertu as their next line have done well.

      I think the answer to your questions about why I’m distressed while still believing in a higher power is simply that I’m human. My faith is a huge part of my coping overall and, as you said, none of this is fully rational. I’m constantly reminding myself, constantly going back to those building blocks, but I still struggle.

      As to the poem and word choices, I am with you, it’s hard to embrace. I do believe it takes something really specific and special, something beyond bravery or courage or resilience, to handle something like MBC. Without a better word to describe what type of bone deep strength to know what is coming and yet keep showing up for appointments, for medication, for all the things that MBC requires, I’m left with what we have. If you have a suggestion, I’m all ears. And I do think that the choices we have are how we deal with it, not that we can choose to have MBC or not. But my understanding of all of this is constantly evolving.

      Appreciate your thoughtful comments and for taking the time to read and comment.

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  9. What is there to say, except, “I’m sorry. This sucks!” (And ditto @barbigelow!) I’ve had the song, “Time in a Bottle” running through my head recently. I want more time for all of us, but even more I want the pain to stop and I want us all to dance with NED.

    Thank you for taking the time to write and to share this sucky update. Am sending you love and prayers and as @Julia said, the peace that passes understanding.

    Carol S

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  10. Thank you for your medical update and all your words of wisdom. Cancer SUCKS!!!
    We all must discipline ourselves to live within the boundaries of today. God continues to walk with us, helping to carry our burdens. Peace, Comfort and Love.❤️

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  12. Abigail, I want to smash something and scream for you. I hate this. You have been a mentor to me, though you likely don’t even realize it, and I have benefited from your knowledge, honesty, and vulnerability – we all do. Thank you for sharing the poem, too – it hits home. I’m hoping Enhertu is amazing like everyone says it is, and that you get 7 more years on it (and are able to manage the side effects). Sending love.

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  13. ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️🥰🥰

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  16. Hi Abigail,

    I’m sorry to read that the trial was as you said, a colossal failure. It’s telling that you somehow knew but also had started to doubt yourself a bit. You have such a keen sense of self – intuition – or whatever you want to call it. I hope the Enhertu does what it’s supposed to do, and for a long time, without too many awful side effects. You know how I feel about platitudes, so I’ll stick with sending you loads of love, my friend. This community cares deeply, and it’s a privilege to be a small part of what helps lift you up. And that poem… no words. Just more love. xx

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  17. Oh, Abigail. I’m so sorry – and also furious at those oncologists who dismissed your very real concerns over these past seven years. Yet I’m also grateful that you keep sharing your experiences here, both hopeful and horrible. I hope your docs – and all oncologists – are reading this, too. You write about the realities of MBC in a way that the pink ribbon PR folks will never do. As you say, and as so many others have learned from you, it’s one hard thing, one breath, one minute, one hour, one day, one treatment at a time.

    xoxo ❤️

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  18. I’m sorry. I don’t like hearing this. My neighbor who also is battling stage 4 metastatic breast cancer also got bad news in her scan from a week ago. Plus, she is fighting the flu. Her chemo will change.
    I hate cancer. I hate it. Thank you for sharing your journey with us. You are loved.

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  19. Abigail, I am thinking of you, and I want you to know I am thinking often. The poem moved me to tears. I hope it’s alright to send you hugs Abigail

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  21. Thank you for sharing this post, it certainly resonated with me in a number of ways, especially around the time I have left, which is unknown as I work through my treatment options. I am like you obsessive around hope and believe even that as we continue on our cancer journey, perhaps modern science will find a cure, maybe AI will save us from a medical perspective?

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    1. Hey there — as a tool AI has a long way to go but I do think it’s a useful tool. Can’t get too focused on one thing only as cancer is so complicated, in my opinion. As with most things, it’s complicated. Appreciate you liking and commenting!

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