One year ago my life was turned upside down. I was driving down to Boston in the middle of a rain storm ⛈ that was the remnants of a hurricane Florence when I got the call that my MRI showed a large tumor growing on and behind my sternum, and that the imagining also picked up on other worrisome spots on my vertebrae. This day, and that whole week is seared into my brain. But you know, 12 months later I am okay today. I still have cancer and I may be putting up with a lot of side effects, but I have got my kids, my husband, my family, my friends, and you, my community ♥️. You all have lifted me up, supported me in big and small ways, shown me love and comfort, provided me laughs, tears, and loads of swearing. Thank you 🙏🏼 for seeing me through the hard days. Thank you for continually being there for me. I didn’t know if I had strength to do cancer 2.0 but I quickly realized that I couldn’t do it alone or even by depending on just my family. I need you all! So please accept my gratitude and love 💕 in return. Xoxo 😘
Alright, this is a post that has been in the making since March…Not sure why it has taken me this long. As we approach my 1 year mark with an MBC diagnosis I felt a need to revisit this topic. Continue to ask me questions when they come up; happy to answer them along the way.
I have been asked a few times if I knew that I was at risk of becoming metastatic. This is an interesting question because it comes from people within the cancer community as often as it does from those outside the cancer community. Because I understand stats pretty well and I am a firm believer in the phrase “knowledge is power” I knew my risk was higher post diagnosis 1, than before. But if I am completely honest, I didn’t really think it would happen to me right now, or in this way.
What I mean by that is that I thought I could have another tumor come up in my breast again, and that would be considered a local recurrence; not metastatic. I really didn’t think it would come rearing its ugly head in my sternum, bones, and lungs. I always knew that I could be the 1 in 3 early stagers that could turn metastatic, but I thought that more than likely it would come back as another small tumor in my breast years from now. I would rationalize by telling myself that there are women with way more risk factors than me that have a much higher chance of recurrence.
Let me take you on a little trip down memory lane, back to 2016. I had Stage I hormone+ IDC with no family history and no known risk factors. At that time I was a healthy 31-year old that had started menstruating late, had children by the time I was 30, breastfed them both for a total of 35 months, wasn’t overweight, exercised more than the average person, didn’t smoke, ate a healthy diet, and only had a few drinks a week.
In the U.S. 1 in 8 women will be diagnosed with breast cancer in their lifetime. When we lived in Eugene I had a core group of friends that totaled about 10 women. If you do the math at least one of us would get breast cancer in our lifetime. In 2014 a good friend of mine from that group was diagnosed with breast cancer and when I was diagnosed in 2016 she said “dammit, I thought I had taken one for the team.” Unfortunately for us, that’s not how stats work and yet our brains try to make sense like that.
When I was going through radiation, during my first diagnosis, I remember telling my mentor and friend that it feels like cancer returning to my body was a matter of WHEN not IF. She responded the way any good mentor does which was with a that’s not necessarily true. Her own story included a Stage I diagnosis with no family history or risk factors and a reoccurrence YEARS later, and her reoccurrence wasn’t metastatic. She was living proof that it could come back but it didn’t have to be a death sentence. This is what I pictured for myself too.
When I first felt the tumor on my sternum in the summer of 2018 I didn’t think mets. I kept telling myself, nope not me, this is a regional recurrence, something contained to this area in my chest, no where else. Sometimes denial or compartmentalizing is what we do to deal. It was my coping mechanism because sometimes stats don’t tell my story the way I think they should.
So did I know it could happen to me? Yes, I was acutely aware that it could happen to me. Cancer clearly had it’s own plan and didn’t consult with me though, because here I am 3.5 years out from my first diagnosis still playing with numbers and wondering which stats will apply to me and which won’t.
You may be wondering what’s happening in CancerLand, or maybe you’re not, and if that’s the case, you’re in the wrong place. But if you have been patiently waiting here’s the IOU that is due.
Three weeks ago, I went in for my usual infusion appointment. It just so happened to also be an appointment where I was getting scan results, so I brought a friend. Scans were stable. For those of you lost on what that means, that’s good news. We love shrinkage, and we also love stability. Stable is good. Great, in fact. The longer I am stable, the longer I get to be on this drug line, and that means I won’t exhaust my limited treatment options too quickly.
But on that day I ran into a little hiccup. My blood work didn’t look as good as it has in past workups. I was neutropenic, which means my white blood cell (WBC) count was lower than 1000 or 1.0 depending on which scale we are looking at. Low WBC indicates a suppressed immune system, which means treatment adjustments. It turns out that in the grand scheme of things, this ended up being a minor issue that day because my neutropenia wasn’t severe.
After some discussion between my oncologist, my research nurse, and myself, we agreed that I would still get my pembro infusion, but we would hold the abema (the daily oral drug) for a week. I would return in a week for blood work, and if my white cells rebounded, I would have my oral medication released to me. One of the things I love about my team is that they listen to me. I fully got a vote on how to handle this situation. So that’s what I did. I got my infusion, returned in a week, my numbers rebounded (just barely), and I got to re-start on the abemaciclib.
I was really anxious about being off my meds for a week. But oh what a sweet week it was. I drank coffee with no stomach cramps or other GI issues and I had normal levels of energy. I still had menopausal symptoms, but it all seemed tolerable with a daily cup of Joe. And as soon as I went back on the oral drugs all of the side effects returned.
As you might recall, I have been having some back pain for a while now. It’s something that hasn’t gone away with OTC or stronger pain medication, but it is manageable. But I went in for an MRI of my spine to see what we could see, just to make sure it wasn’t anything affecting my spinal cord. Turns out I have some disc degeneration/maybe arthritis, which isn’t uncommon, so I am heading back to BWH to meet with an orthopedic specialist in a couple of weeks to discuss how to manage the pain and learn more about what it all means. Right now, I feel lucky that I am still mobile and can handle most days, even if I feel more limited than I did before.
And that sort of wraps everything up! I came in today to have my infusion and blood workup done. My WBC numbers are just barely over 1.0, but what counts is that they are good enough to receive my pembro infusion and get my oral drugs again. At my last visit, we discussed why my counts might be dipping, and my oncologist said that after a year or so of using these drugs bone marrow can get fatigued; in other words, it is having a harder time regenerating itself. That’s why a break from the medication allowed my body to recuperate. If I have another episode of neutropenia, then I will have to do a permanent dose reduction on the abema. For now though, it’s full steam ahead!
Just another day on floor 9
Coming up, I have a couple of cancer events I am looking forward to participating in. This weekend I am going to a Vintage Vogue Runway for Research fundraiser. The event will consist of a panel discussion and a vintage runway show. The funds raised go towards the MBC research fund at DFCI. And then next weekend I will be heading to Philly for the Living Beyond Breast Cancer (LBBC) conference. I was able to secure some funding to attend. The LBBC conferences tend to be research-heavy, which if you know me is like music to my ears. I’ll definitely let you know how they go.
Alright friends, if you have read all the way to the end here, I am impressed. Thank you for all of the support and love! xoxo
Hannah in CancerLand 