Medical Updates; May 2025

General, Medical Updates 3 Minutes

A lot has happened in the last few weeks and I so appreciate all of you who checked in, sent me texts and memes and cards and gifts and presence. It’s always good to be reminded of how many people care and how vast and deep my support system actually is. And while I would love to send physical thank you cards to everyone, that’s just not possible right now, so please accept my heartfelt thanks and gratitude!

So, for anyone who is needing an update, here’s where we are:

  • PET/CT on March 14th showed that there may be a sheath around the tip of my new port and that there may be some mets “waking up” a/k/a increased metabolic activity, but only one technically above the threshold of 3, which is when concerns begins. No new mets, which is always a good sign.
  • Echo the following Monday demonstrated that what was noted on the PET wasn’t a sheath, it was a clot clogging the tip of the port which extended into my heart and there was also another clot seemingly unattached to anything hanging out in my heart. Cue a bit of panic.
  • I started Eliquis, a blood thinner, immediately, and got my port taken out after I’d been on Eliquis for a week and a few days. Didn’t fully realize that having a port elevates the risk for clots all by itself, so learning a lot about that, as well as my own risk. I do remember being told that a diagnosis of breast cancer elevates my risk of blood clots, but didn’t focus on that risk (among all the others) until now.
  • My cardiologist wanted me to wait for a month to re-do the echo to allow the blood thinner to work and for me to skip two treatments of Enhertu. That Echo happened on April 17th. Did I mention I’m not good at waiting??
  • The results of the Echo on the 17th were that I was cleared for treatment on the 18th, but the issues noted on the echo from March weren’t resolved. The ejection fraction is still lower than normal and those darn clots are still hanging out, smaller but still present.
  • And as if there wasn’t enough on my plate, the last few Brain MRIs have come back with either a potential lesion or artifact in the same place, so I’m going to be getting a repeat Brain MRI sooner than the regular scanning cadence.

Treatment on the 18th was pretty smooth. It was the very first time that I had treatment in a peripheral vein. I have had blood draws and fluids and a vitamin infusion or two in my arm, but never the actual cancer treatment. It was a big adjustment and something I’m not super excited about repeating. I’m actively researching and coming up with ideas to make the ongoing infusions in my arm more tolerable. If any of you have tips, I’m all ears!!

Over the past several weeks, I’ve worked to identify how all of this is feeling. Yes, I realize that sounds a little bonkers but I am not a person who is easily in touch with my feelings. I tend to focus on solving problems with my brain first and then feeling the feelings, a boon in crisis negotiations and making decisions about cancer treatment but not so much for real life and having relationships.

I’ve had nearly eight (8) years to wrap my head around living with a terminal diagnosis and it’s rather astonishing how we humans can learn to live with many different things. The recent results and new diagnoses have thrown me. I get that these new bumps may not seem as big as a terminal cancer diagnosis, which I’ve worked hard to wrap my head around since 2017, but I think the difference is the immediacy. Can’t say that I’ve fully integrated these new concerns, but I’ve made some progress and am feeling more settled.

Remember those Mother’s Day pictures I wrote about earlier? You can read more about that here. Well, we got them back and they were pretty amazing, even if they are still a bit triggering, especially in this context of a new life threatening issue. You can find out more about the photographer, Melissa, on her website.

My first thought when I heard that I was diagnosed with MBC back in 2017 was about my kids, that I hadn’t had enough time with them. They were in the process of turning 2 and 4 in that whirlwind year of diagnosis, treatment, surgeries, etc., and now they are both double digits. They keep me focused on the here and now, on living now, and their joy is simply infectious.

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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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22 thoughts on “Medical Updates; May 2025”

    1. I’ve included complimentary approaches at every step of my diagnosis in partnership with my oncology teams. I’ve not heard of the Regeneration room, but will look into it. Thank you for the recommendation!

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  3. Wow. You are amazing. Many days I forget that I am not the only one with MBC … to stay connected … to say thank your for all the good in my life as a MBC individula. Thank you for sharing the ups & downs. Thank you for reminding me to stay connected XOXOXOXXO

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  4. Abigail, I’m pleased you’re feeling more settled. I am sure the way you rationalise things helps you cope but it is also good to connect to your feelings. Beautiful photo x

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

  7. I was diagnosed with MBC back in 2014 (early stage in 2003). Just last month I had my port removed (after 11 years of use) for the very same reason as you…blood clot. They put me on Eliquis too, for 2 weeks, then port was removed 2 days after that. After so many years of zero issues, the clot came out of nowhere. I’d never heard of clots being a complication from the port or even treatment! (I’ve been off active treatment since 2020…long story there). Anyhow, so glad you are writing…its cathartic! Wishing you the very best.

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    1. Thank you for sharing your experience! I am hopeful to get another port but have to wait until the clots have been reabsorbed or calcified so they aren’t mobile. It’s not an easy thing to wait.

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  8. I won’t comment on all the medical factors BUT what a beautiful photograph – you are lucky to have them and they are lucky to have you. It brought the hint of a tear to my eye although I would deny it if you asked.

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  9. Beautiful family photo! I’ve also found that going through cancer treatment with young children kept me focused in the moment; kids also provide much-needed levity.

    You mentioned switching to treatment without a port; I went through 18 infusions and some other needle sticks for scans, etc. without a port because my doctor was worried about blood clots and I was pregnant at diagnosis. My recommendation is having the nurses place a warm blanket around your arm for about 10 minutes beforehand; I had occasional bruising from all the jabs and chemo, but this process seemed to make the infusions smoother at the start and throughout. If they have any trouble placing the IV, I also recommend asking for the experts right away. I sat through one session where I was poked 12 times for an MRI IV after treatment, and my oncologist told me that never should have happened; I learned to advocate for those who can best place an IV right away rather than waiting. Sending you hugs and hopes for good news. Take care! ❤️

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