I’ve seen others living with Stage IV Metastatic Breast Cancer (MBC) talk about bonus birthdays, those birthdays after a serious diagnosis, and I’ve decided to adopt this terminology. I turned thirty-nine (39) a few months after my de novo diagnosis in 2017 and today, in 2022, I’m turning forty-four (44). It’s not so much as milestone birthday as perhaps next year or fifty (50), which my husband will reach next June, but seeing six (6) birthdays after such a detour is pretty significant.
This is the time of year when I try to take some time to take stock, look around, examine what is going on internally and around me. And there have been a lot of changes in 2022. Here’s some of the highlights …
In January of 2022, we learned that the cancer in my body had spread from my bones to my liver. While it was a terrible blow to realize that the cancer was becoming more aggressive and had gone from bone only to visceral (organ) disease; at the same time, it was the first time we learned more about how the cancer had mutated since it left my breast. The liver biopsies gave us the information to be able to select more targeted therapies that have proved amazingly effective. This type of news, which is both a terrible blow and yet contains significant silver linings, is a pretty good example of how ambivalent this living with MBC can be.
In May of 2022, I finished up six (6) cycles of Taxotere and Xeloda together (my fifth (5th) line of treatment) and then discovered in June that I had finally reached that coveted position of being “No Evidence of Active Disease” (NEAD). I’ve remaining in that position as far as the cancer is concerned for the remainder of 2022. While there are those unicorns who live with MBC without getting to “No Evidence of Disease” NED or NEAD, I can’t fully describe how grateful I am that there is no active cancer discernible for two (2) scans in a row. Next one is in February, 2023.
Let me just pause here and remind everyone that reaching NED or NEAD does not equal remission (utilized for blood cancers) and doesn’t mean that I will ever be done with treatment. This label or status means that we’re on the right track in terms of treatment and the cancer is behaving itself, for now. I still get scans every few months and still have to see my team regularly. We never know when the other shoe will drop and I’ll be changing treatments yet again.
In June of 2022, right around the time of that great first scan, we moved from Miami, Florida back to Orlando, Florida. We is me, my husband, our two boys, and the very spoiled cat, Maya. This transition has given us some of the highest highs and lowest lows of the year as we had to adjust simply everything. We are very thankful to my husband’s employer and his coworkers in how they have supported this move and for their flexibility in our changing plans. We also left behind some forever friends, who are now long-distance friends.
In July of 2022, Walton Johnston, my father in law died. He’d been residing in various nursing homes since 2005 and it was hard for us to be so far away from him while we lived in Miami. While his passing was both a relief (the end of his suffering and low quality of life) and caused so much grief, we are thankful to have been able to see him the night before he died and to be present physically here in Orlando to plan and execute his funeral plans. Dealing with the details of the funeral and watching my husband navigate his grief has given us a lot of fodder for planing and preparing for our future.
In August of 2022, our boys began school at a brand new school and we have all had to adjust to this new setting. As with everything, there are so many pros and cons to being in a new school community. In our drives to and from school, many of the conversations center around what is different. The new school hasn’t always come out on top; at the same time, I am thankful for those families and teachers and staff that have smoothed our path and made the transitions easier.
Also in August of 2022, our littlest, the intrepid Malcolm, began taking karate instruction. He will be graduating tomorrow with his orange belt (the third belt since August) and to say that this experience has given him confidence is an understatement. Watching how he has blossomed and learned so much has been an amazing experience. We are so thankful for the team at Championship Martial Arts and all they do to build up Malcom’s confidence.
In September of 2022, I was hospitalized with “Unspecified Sepsis without Organ involvement,” which basically means that there was an infection in my blood that has no apparent source. To say that the week I spent in the hospital was terrifying is an understatement. Sepsis is one of the leading causes of death worldwide, with many different causes, and I knew just enough to be really scared. While I’ve been living with various levels of compromise to my immune system since 2017, the reminder that I can’t handle infections or diseases in the same way as before cancer was not a welcome one. Hurricane Ian made landfall in Florida while I was in the hospital, which caused all kinds of further issues — thankful for my mom staying with me in the hospital and accompanying me to follow up appointments and procedures. Thankful to finally be on the mend from that experience.
In light of the ongoing GI symptoms and electrolyte imbalances after the sepsis experience, I took a step back from advocacy in October and November. Didn’t really understand how much I needed to just focus on rebuilding my strength and focusing on my family. In November of 2022, our big boy, the often intense Liam, was asked to join a soccer team through Orlando City Soccer. He was invited to the join the team because of his participation in the after school soccer club and he’s over the moon about it; he was able to practice with the team this fall and will be official in the Spring.
Also in November of 2022, I was able to finally meet a dear friend, Warrior Megsie a/k/a Megan Claire Chase. We’ve been connected for years online, have collaborated and connected professionally and personally, but had never met in person. She was kind enough to fly down for a weekend and all I can say is that I’m grateful, beyond grateful, to have finally met her in person. We got to see one another TWICE too because she came to San Antonio a few weeks later.
Reconnecting with friends in Orlando has been a big part of what has made the move back sweeter. I’ve been so thankful to reconnect with “old” friends and connect with new ones on a monthly basis in person as well as virtually. There are too many to post all of the pictures!
In December of 2022, I finally felt well enough and that was good timing because the 2022 San Antonio Breast Cancer Symposium was happening. While it always overwhelming from a physical and mental perspective, I am so thankful to be able to see so many amazing people and learn the latest and greatest in breast cancer research. I’m taking so much back to all of the communities in which I serve and I’m grateful to be able to do that.
And that brings us to today, the winter Solstice. A time of darkness and rejuvenation. A time of calm before the storm. My dear husband took me to a spa, as we often do, and I am looking forward to a day of connecting with friends near and far and being with my guys. Life is not always easy, but there are sweet moments, people, and experiences that make living it worth the effort.