Brace, Brace, Brace

Medical Updates 3 Minutes

For the first time in quite a few years, the weight of MBC is is a very present threat and we find ourselves bracing for what’s coming. In hindsight, I think I’d already started bracing for the news we got last week.

Early last week, I had a PET/CT, which I get roughly quarterly, and the results demonstrated that the cancer has spread to my liver. I now have three measurable hepatic lesions along with a variety of new, more active, larger and growing bone mets in a variety of places throughout my skeleton. The combination of Verzenio and Faslodex, my third line of treatment, has utterly failed.

While any diagnosis of cancer is devastating, we know that not all cancer is created equal and the same goes for metastatic sites. For the last 4.5 years, one of the factors that has allowed me to breathe easier is that the Mets were “just” in my bones. Bones can (and do) break due to the Mets and I’ve had quite a few “pathological fractures,” but death is not a direct result and the life expectancy of someone with bone only Mets is roughly twice that of people with soft tissue Mets.

With one phone call, that small nugget of hope I’d been hoarding was stolen forever.

As I understand it, when the liver ceases functioning and no longer filters toxins from the blood, the build up of those toxins causes a great deal of confusion and then an hepatic coma. I’ve seen and heard this happen to quite a few dear friends. Their communication becomes weird and garbled as their brain function becomes more and more difficult and then the news that they died is shared.

There have been some terrifying moments since my diagnosis in 2017 and this news ranks pretty high. My husband says this news is the second worst of his life, only outranked by the news of my diagnosis. It’s getting harder to rank news like this for me.

And so we find ourselves behind and scrambling. The cancer cells have been merrily proliferating over the last several months as my second line of treatment failed and then the replacement hasn’t ever done much of anything to keep them in line and now we must catch up. There is no time to waste now that an organ is involved, an organ that I desperately need to work properly for as long as possible.

After a LOT of time on the phone and many emails, we have a rough plan that has been reviewed and approved by my quarterback of treatment here in Miami, Dr. Wang, my doctor at the Mayo Clinic and several other doctors and researchers that I trust to provide input. I’m also working on an appointment with another doctor just to have another set of experienced eyes on my treatment now that the stakes are so much higher.

Let me just say that part of what made things more difficult to deal with was all sorts of disruptions and staffing issues due to Covid. Initially, I was being offered March appointments to fulfill orders that had the word “stat” on them. I was able to get the timing sorted out with a great deal of effort, a lot of name dropping, tears and a reminder to many different levels of people that this is literally life or death for me. It was exhausting.

So, this week, we have bloodwork for a liquid biopsy and other tests (gotta check for Covid too!) in advance of the biopsies, chemo education on the new meds and the biopsies of the new liver Mets. A silver lining of having soft tissue metastases is that we will finally have an actual biopsy of a metastasis for the first time. For 4.5 years, we have been guessing and assuming that the Mets are still the same subtype as my original tumor. Now we will actually find out for sure.

And next week, I will start the combination of Taxotere/Docetaxel, an IV Chemotherapy medication and Xeloda/Capecitabine, an oral medication. The schedule is a bit complicated and will take some time to get used to but will be anchored by the infusions every three weeks so long as my body tolerates it.

As usual, it will take some time to adjust to the side effects of the new medication. While everyone is different, I can expect with some certainty to deal with some peripheral neuropathy, likely low white blood cells, nausea, diarrhea, nail changes and I will probably lose my hair again.

And while I’ve been working on sorting all of this out, life has continued. The boys have to be taken to school, schedules have to be addressed, homework done, and bedtimes observed with teeth brushing and movie nights and lunch boxes too. The combination of cancer care and real life is often a jarring whiplash of emotions and focus.

We haven’t told the boys yet. The last time I lost my hair they were two and four. They could care less and we made it as fun as possible. At six and eight, we’re expecting some different conversations.

This marathon is brutal.

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.

Published

59 thoughts on “Brace, Brace, Brace”

  2. Brutal for sure; my heart breaks to hear this news. Thinking now your pulling back from communicating for those weeks was the “bracing” your mind and body needed. Praying for you and each of your precious family members as you navigate these changing waters. Lord have mercy 🙏❤️🙏❤️

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  3. Sending sooo much ❤️ ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️.

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  4. Thinking of you ❤️

    The picture book “Nowhere hair”, while a bit little kid focused, had even my then 11 and 12 year olds coming in to listen. It seemed to help my 9 year old a lot with processing what I would look like, etc. I don’t know if your kids like picture books but if they do, it might help.

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  7. I am so sorry. Thank you for sharing your strategy and fear. Joining others here in strong hopes for tolerable, effective treatment and all the support you need.

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  11. My thoughts and prayers are with you and your family. I know you will face this challenge of your journey with tenacity and determination. Thank you for the education you are providing in sharing your journey.

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  12. Hi Abigail,

    I’m so sorry to hear this news. A brutal marathon indeed. I’m glad you have a plan in place, and I hope that the side effects aren’t too many and too awful, though the ones you anticipate based on your description are pretty awful. Thank you for sharing so candidly. Sending you love. So much love. xx

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  14. I’m so sad that you are facing this now. On a hopeful note- I was diagnosed stage four with Mets to my bones and liver in October 2014. The biopsy of my liver Mets was triple negative. My original biopsy at stage two in 1998 was ER/PR positive. My doctor put me on Xeloda and after about 9 months my pet scans were good. Nothing lights up and I’ve been NEAD. Hoping you have a similar response to your new treatment! 🤞🙏🏻❤️

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  15. Too brutal! I am so, so sorry that you have to go through this. Just yesterday my son was badgering me to get a dog and I said hell no, because I had a dog during my initial cancer treatment and well remember letting to dog outside, puking, letting the dog in. I can’t imagine how hard it is with little kids. One thing I’ve discovered recently (because my situation is changing, too) is that my former doc should’ve done biopsies when I was declared Stage 4. Who knew? So the new doc talks about blood biopsies all the time because she says that diagnosis could’ve changed (didn’t know that either!), and there are medications I could take but only if the biopsies show I can take them. I hope that your next treatment does well for you. And you are in my thoughts and prayers.

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  16. I think the plan of attack you have, the people helping you like the Mayo Clinic and your incredible courage will help you. Your fighting is an inspiration. Thank you for sharing this difficult part of story. Hoping and praying all goes well with the new treatment. And by the way, my wife wears a lot of hats now, and always looks like she is going to church!

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  18. I’ve just finished reading this Abigail and I am so desperately sorry that you and now begin yet another uphill trek in this as you aptly say
    ‘ this Brutal Marathon ‘
    Where young families are involved my heart breaks for the telling of this news.
    I wish you extraordinary strength and determination, which I know you have, in spades. I hope and pray this treatment will be effective and as kind to you as is possible and that it gives you time, much much more time.
    Gentle but firm and warm hugs from Ireland
    Siobhán

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  19. Damn. Damn. Damn. This news is brutal indeed. I’m so sorry, Abigail – and especially because in the face of all this, you’ve had to fight with “a great deal of effort, a lot of name dropping, tears and a reminder to many different levels of people that this is literally life or death for me…” – despite feeling too exhausted for any of that work.
    xoxoxoxoxoxoxo

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  20. I’m so sorry that you’ve gotten this news, Abigail. I hope the new treatment program will work well for you, that adjustment will go as smoothly as possible and the side effects won’t be too bad. You are in my thoughts. xo

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  23. My heart goes out to you and family with this latest progression. Getting this kind of news is devastating, as us MBC patient know 1st hand. I’m sorry you are on this roller coaster and pray you acclimate to new meds easily and they knock the new cancer out of your liver. Love ♥️ and hugs 🤗, Charlene

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  24. I am familiar with that news, especially from Elliot’s perspective, and now from some of yours. I imagine that’s why it broke my heart to read this. I’m so incredibly sorry you got this news and that this damn virus is interfering with EVERYTHING.

    I was just thinking of something I was going to send you earlier today, and then I read this. I think it’ll make you smile or laugh, for a minute at least. I’ll send it now so I don’t forget.

    I know you won’t give up and if anyone can play up catch up quickly with this damn disease, it’s you! Sending so many prayers your way, for you and your family. We had to give devastating news to a 6 year old, although, she had already dealt with some traumas along the way.

    I’m so proud and impressed at how you manage to keep up so well with the boys. I hope your team gets a handle on things and you can keep defying statistics!

    I love you, girl! Sending all my love. ❤️❤️❤️

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

  27. Hey Abigail, just seeing this! Sounds like your team is ready to get you straight and what a team you have drafted. I call my oncologist my QB as well so I guess that makes us the general managers…I feel a blog entry of my own coming on. haha!.Praying your chemo is as easy as it can be. Us mom of boys don’t have time to be brought down by this MBC – BS!! You are a force, my friend! Grit and determination are your middle names:) Message me anytime you need a pump up!

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  30. I’m also hoping you find a way of dealing with the potential hair loss issue with your beautiful boys. I was fortunate in that my boys were – seemingly – fine with it first time round when they were in their mid-teens and are again now as young adults. Wishing you strength. x

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