The Fragility of Hope

Medical Updates 4 Minutes

One of my favorite medical shows is Grey’s Anatomy and in a series of episodes, there is a surgeon who has a brain tumor. Dr. Nicole Herman isn’t on the show for very long, but she had several poignant comments about hope; that when one is living with terminal inoperable cancer, hope is most devastating because it is often offered and taken away. In riding the rollercoaster that has been the last few days, I can personally attest to this, that hope is fragile, that when it is dashed, it is incredibly difficult and that living with a terminal diagnosis where hope comes and goes should be added to Dante’s circles of hell.

About a year ago, after an immunotherapy clinical trial spectacularly failed, I started Enhertu, my 7th or maybe 9th line of treatment since my de novo Metastatic Breast Cancer (MBC) diagnosis in 2017. A few weeks ago, I signed a consent for another year on Enhertu and last Friday, I presented myself to the Mayo Clinic in Jacksonville to receive a PET/CT scan, my 3rd after starting Enhertu, along with a brain MRI. All of my tumor markers are in the normal ranges or undetectable and Signatera tests are coming back with the levels of ctDNA as nearly undetectable. And yet, the PET/CT results revealed that the metabolic activity in multiple bone mets is now detectable, which has been a reliable leading indicator of progression for me. I’ve had multiple scans since starting Enhertu that couldn’t locate any metabolic activity and this was incredibly unexpected.

In the midst of processing that progression may be coming and that Enhertu may not work much longer for me, I had an Echo of my heart. I’ve been getting Echos every three months since I started Enhertu, so it wasn’t an appointment because of any symptoms. It just so happened that because of an issue with my appointment last week, this week I was seen by the manager of the people who perform the echos and he caught something. I learned a few hours after I left the office that I have clot(s) in/around/attached to the tip of my port; the port that has a tube leading directly into my heart in addition to my ejection fraction declining to concerning levels, a known side effect of the active ingredient in Enhertu, Herceptin.

After a series of portal messages and phone calls and more portal messages and more phone calls, we have the semblance of a plan and I’m all still wrapping my head around what’s coming and how to walk this fork in the road. I’ve started a blood thinner, I have an appointment next week to have my port removed (I just got this second port inserted last November), and I’ll have to skip the next two Enhertu infusions to see if my heart recovers. Perhaps, after approximately 4 weeks and a repeat Echo, I might be able to schedule the procedure for a new port and maybe I’ll be able to get Enhertu again. But maybe not.

And I’m not good with maybe or waiting.

Hope. Uncertainty. Waiting. Trust. Anxiety. Terror. Rage. Depression. Love. Breathe. Hope.

I vacillate between all of these, sometimes all in one moment. Because I try to be prepared, I run scenarios through my mind and think about what I might say to my children about what’s happening, how I can explain this development. My eldest son just turned 12 and my youngest will be 10 in May. We have worked hard to be honest with them, to share with them the necessary information so they won’t be scared, so they aren’t blindsided. It’s hard to do when we are blindsided regularly, no matter how much we try to prepare and anticipate, no matter how many conferences I attend or how much I learn.

And trust, that one is HARD for me. Those scenarios that I run through my mind? Most of them are about things that could go wrong. I’m really good at catastrophizing, at anticipating the worst. I’ve been taking steps closer and closer to death since I was diagnosed in 2017 and yet this one feels more fraught, more impactful, just more. Making decisions in this context is daunting. All of the emotions are roiling just beneath the surface and objectivity is a distant memory. No medical professional has sufficient time to truly meet me where I am, nor do they likely want to because terror is not easy to handle and when I’m terrified, I can be exacting and I tend to cross examine people. No one likes being cross examined.

I will find my equilibrium. I will be able to trust that there is a plan that will result in the best outcome for me and it’s already known. I will be able to trust the plan, the medical professionals, and their recommendations. Just not today. Today I am terrified and anxious and holding onto a semblance of sanity with my fingernails. Literally.

And yet, a meme about hope occurs to me. I don’t know the original author to give attribution, but it makes its way around the support groups every now and again and goes something like this: “People speak of hope as if it is this delicate, ephemeral (fragile) thing made of whispers and spider’s webs. It’s not. Hope has dirt on her face, blood on her knuckles, the grit of the cobblestones in her hair, and just spat out a tooth as she rises for another go.”

Now that’s an image of hope I can get behind. And so I will rise for another go, maybe tomorrow.

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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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24 thoughts on “The Fragility of Hope”

  1. I know you will rise, Abigail. You always do. As someone who lives in hope—for you, for the cancer havers in my family, for our country—I am grateful for that gritty visual. You have my love and support. 🙏

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  4. Thanks for sharing Abigail. I had a blood clot develop under my left clavicle about 9 months into Enhertu and was put on blood thinners. I think it’s a side effect they don’t talk about much. Wishing you all the best with the next phase.

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    1. So true! And our risk for clots is elevated with a cancer diagnosis — also, I didn’t realize that just having a port increases the risk of clots. Learning a whole lot that I didn’t want to know!

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  5. Hi Abigail,

    I’m sorry you have to go through the ordeal of processing and devising a new plan. Again.

    You will find your equilibrium. In the meantime, go ahead and feel all the feelings. I will do some cancer cursing on your behalf.

    Sending love and support. Always.

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  8. Oh my goodness Abigail. I have read your post now for I don’t know how many years and it is journey that I am luck I have never had to take. You always seem to express HOPE in many ways. And I am always left not knowing what to say. But in the long run, if you give up on hope you have given up on everything. Go outside sometime today and put your hand out and I will send a silent prayer for you to catch.

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  9. Pingback: Weekly Round-Up | Journeying Beyond Breast Cancer

  10. I have followed you for five years. How freaking difficult for you. I pray for the sparks of hope and wisdom for this next fork in the road. Your roar is heard. You are a tenacious soul. ❤️‍🩹💜

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  11. Thanks so much for sharing, as usual, Abigail. I’m so sorry that things aren’t going smoothly right now, and am hoping they stabilize soon, and you’re able to resume Enhertu (or something as effective but less toxic, if it comes to it). I am having a few blips myself right now, but pushing ahead and trying not to think about it too much. We all have our coping mechanisms. However, I wanted to share something somewhat positive: after being on ribo/let for 2 + years, my very extensive bone mets lit up dramatically this summer, and I had corresponding pain (big holes, 4 pathologically fractured vertebrae, plus increased activity in many of the rest). I advocated for an out of town trial (Elaine 3), and it took a long time to jump through the hoops of getting accepted, so I was pretty worried about what would show up on my baseline trial scans in early October (first dose Nov 6). It ended up that they hadn’t changed from July, even without new treatment, and after fairly dramatic progression. I also had had a mixed response within the first year or so of previous stability on ribo. I was re-scaned after 3 months and the scans went back to stable and stayed that way for at least another year. I know you’ve been at this longer than me, and we must manage our expectations, but things might not be as bad as we think. Wishing all the best for you

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  12. Thank you for sharing these new steps in your battle. I’m very sorry that you’ve had to deal with these blows. It takes much energy to absorb them and keep moving.

    Thank you for sharing that quote about hope, it’s a good one.

    I’m keeping you in my thoughts.

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