11 Years Later: Checking In and Reconsidering

It's been a long time since I've written here. Almost 11 years, actually. For a while, that silence felt right. Things were stable. My health was solid. My bloodwork came back fine year after year. My yearly mammograms and ultrasounds looked good. I was living my life, raising my kids, and didn't have much to report that felt urgent or necessary to share.

But here's what I didn't talk about: the small things. The things that pile up quietly in the background.

About six years ago, I was diagnosed with fibromyalgia. Two years ago, I developed muscular fasciculations in both my legs. Since my oophorectomy, I haven't been able to sleep through a single night without over-the-counter medication. I've been dealing with burning at my chest bone, on and off, for longer than I want to admit. There's brain fog. There's an overstimulated nervous system that keeps feeding back into itself. These aren't huge, dramatic health crises. They're just there. Persistent. Nagging.

And I've been asking myself a question I never really articulated out loud before: Are these things just what happens when you get older? Or are they connected to something bigger?

This November, I'm turning 50. It's a milestone that's been sitting with me for a while. I lost my mother to breast cancer when I was 13, and every birthday past the age she was when she died feels significant. It makes you think about your choices. About your body. About whether the decisions you made years ago (that were 100% right at the time) are still serving you well.

Eleven years ago, I had my implants placed after my mastectomy. That was the right choice for me at the time. It was the easiest choice for recovery with three very young kids and an International flight from Singapore to Texas. I felt good about it. And for the most part, I still do. But at 11 years, which is around the timeframe when implant replacement becomes a consideration, I'm finding myself wondering about things. Questioning things. Reconsidering options I said no to years ago.

I have a surgery date of April 9th scheduled at this point. A surgery to have an implant exchange. However, I have also have a consultation scheduled for October to ask some questions and perhaps get some more testing done. Not to make a concrete decision yet, but to ask more questions. To get informed. To figure out what my body might actually need. Do openly discuss whether or not I potentially have BII (Breast Implant Illness) and if implants are the right next step.

And I think this matters. I think it matters because too many of us are living with small, persistent symptoms that we chalk up to aging or stress or just the way things are. We don't talk about them. We don't ask questions. We just keep going.

But I'm going to talk about it. I always do! And I'm going to figure it out. And I'll share what I learn along the way.

This is the beginning of a new chapter for my blog. Not the end of the old story, but a new part of it. Stick around.

When She Turned 18: Her Choice, Her Journey

My oldest daughter turned 18 this year. And when she did, she asked for genetic testing.

I didn't push her toward it. She came to me and said she wanted to do it. She's grown up knowing my story. She's been there for appointments, surgeries, conversations about risk. She understands what BRCA means. And she wanted answers about her own genetic status.

She had already done 23andMe, but like many people, she wanted confirmation. 23andMe itself recommends verifying results with your doctor. For her, that mattered. She wanted concrete answers, not just a home test result sitting in her mind.

We were referred to my incredible gynecologist, Dr. Lucas Minig, who connected us with Dr. Vicente Guillem Porta at Unidad de Oncologia Medica for a genetic consultation. The process was straightforward. The doctors were kind, thorough, and genuinely good at what they do. They prescribed bloodwork, we went to the lab, and we waited.

The waiting felt long. Not in an anxious, soul-crushing way, but more like the "are we there yet?" feeling on a long car ride with kids. She just wanted her results back. She was ready to know.

And now she does. She has her answers. Concrete, confirmed results. And she feels good about that. There's something powerful about a young person taking charge of her own health, asking the questions that matter to her, and getting the clarity she needs to move forward.

That's what matters at 18. Having agency. Having answers. Knowing that whatever comes next, she's prepared to face it.

I highly recommend speaking to a geneticist before any testing takes place. My family has been around these conversations since they were itty bitty. We've had lots of talks. They knew what they wanted, and they knew the consequences of knowing. If your children haven't had this history, seeing a geneticist and speaking with one thoroughly is a must. Don't rush this process for them.

A Follow-Up Conversation: Six Years Later

Back in 2018, I did an interview with Grey Genetics about my BRCA1 journey, losing my mother to breast cancer at 13, and the preventive choices I made for my own life. That conversation was important. It helped me process my story and, I hope, gave other people walking a similar path some perspective on what it means to be a previvor.

Six years later, I sat down with them again for a follow-up. A lot has changed. My kids have grown from 10, 12, and 13 into young adults at 15, 17, and 19. And they all decided they wanted to do genetic testing through 23andMe.

This wasn't a decision I pushed them toward. They came to it themselves. Curious about science. About health. About understanding their own genetic predispositions. They know my story inside and out. They've been by my side through every appointment, every surgery, every conversation about risk and choice. We've always been open and honest about what BRCA means for our family.

But I want to be clear about something: I'm not sharing their results on this blog. That's their story to tell if and when they choose to.

What matters here is understanding why I won't share those results. The truth is, genetic testing outcomes carry real weight no matter which way they go. If a child tests positive for BRCA, suddenly they're facing the same decisions I faced at their age. The worry. The choices about surgery, about timing, about their future. They have to figure out what prevention looks like for them, just like I did. That's a lot to carry, and it's deeply personal.

But a negative result isn't simple either. I've seen the guilt that can come with it. The "why not me?" feeling when a sibling carries the mutation and you don't. Or the complicated relief mixed with worry for someone you love. And if results are different across siblings, there's this new dynamic to navigate. One child worried about their future, another relieved but maybe feeling guilty about that relief. It changes family conversations in ways that are hard to predict.

My kids understand all of this. They were prepared for whatever the results would be. But preparing for something and actually living with the outcome are two different things. Those are their feelings to process, their choice to share or not share. What I can tell you is that we're talking about it openly as a family, supporting each other, and taking it one day at a time.

The full conversation covers so much more than I can fit here. If you want to hear directly about this next chapter, the full interview is available on the Grey Genetics podcast.

You can listen here: Spotify or Grey Genetics website

When Dad Undergoes BRCA Testing

* UPDATE: I am negative for the BRCA gene.

Breast Cancer Awareness Month means a great deal in our house. It’s not just another reason to re-post something on Social Media and forget about it. Here’s why. 

My wife, Heather, lost her Mother to cancer. Susan was 41, and Heather was only 13. Heather’s grandmother also had cancer in her lifetime, and if you’ve read Heather’s blog and social media posts, you’ll know about the elective, preventive measures she’s taken to reduce her risk. She has also written two children’s books based off the conversations we’ve had with our own kids. The goal is to help other kids who might be going through the same issues and having the same questions. 

I’m so proud of the active stance Heather takes related to matters relating to breast cancer. She gets herself out there and tries to help who she can by sharing her story. She uses social media, blogs, shows up as a guest on podcasts and video interviews. She really walks the talk. So, what can I do to show my support this October? Well, I decided to get tested myself. After all, my paternal grandmother died of cancer, and both my father and his only brother have dealt with prostate cancer themselves. So today, I spit in a test tube and my doctor will ship my DNA off for testing for BRCA1 and BRCA2. 

Genetic testing isn’t new to our family. Heather was tested for the BRCA mutation years ago as was her Grandmother while she was still alive. Fast forward to last year, I myself was tested (via 23andMe) in search for explanations regarding my own health. I learned a few things related to my own health, such as a genetic variant in the MTHFR gene which won’t allow my body to process folic acid the same way “normal” people do. But I digress. 

This isn’t just a test for how my body metabolizes a B Vitamin. We’re talking about looking for a predisposition to deadly disease. I must admit that I’m a little nervous. However, I’ve always preferred knowing. I’m the guy who would rather people be honest and upfront with me now, even if potentially difficult to accept, to avoid hurt feelings later. I’d rather know, and as the G.I. Joe series told me when I was a kid, “Knowing is half the battle!” Go Joe.

Oddly, the anxiety I have is from what the results means to those around me. My wife has already been through so much. Because she’s positive for the BRCA1 mutation, she already worries about the 50% chance each of our kids carries that same mutation. What happens if I, too, have that mutation?  What about any of the other 30 genes that for which Colors tests? I really don’t want her to stress even more, but I also know she’s happy she found out. And of course, we’ve discussed this, so I’m confident she’ll be okay.

What about telling my kids? Yes, I want to know, but do I share my results with our children? They already have some burden knowing that they have increased risk. At 10, 12 and 14 years old, are they ready for the additional weight on their little shoulders of knowing there could be others? We’ve asked about BRCA and whether they would want to know, and when. Two of them want to know. One, the youngest, doesn’t want to know her own results. The good news is that they are all willing to talk about it. At least we’re talking about it.

Then there’s my only sibling; my brother. Obviously he potentially carries any mutation or variant that I carry since it would have been passed from one of our parents, and he also has three kids of his own. The weight of this decision spreads across the branches of the family tree. 

Lastly, something my wife hasn’t experienced herself as her parents died many years before genetic testing was available; the guilt my parents could carry from knowing it’s passed from them. Not that they should feel guilty, of course. It’s nobody’s fault. If we worry about passing on “broken” genes we’ll stop populating Earth altogether. Probably not a good choice. However, I already know that it’s difficult to know that my son has the same MTHFR variant as me, and I can’t help but feel some responsibility. 

Occasionally this Winston Churchill quote surfaces;

“The truth is incontrovertible. Malice may attack it, ignorance may deride it, but in the end, there it is.”  

It means we can’t deny truth, whether we choose to know it or not. Facts don’t discriminate. Sometimes we fool ourselves into thinking ignorance is bliss, but the fact is that ignorance can harm, or even kill us. 

Truth empowers us. It allows us to take meaningful action, even if at first it hurts.

Heather and I made the decision to KNOW all those years ago so that she could do everything in her power to live a long  life with our kids, something her mom and dad were denied. I’m sure that they would have done exactly what Heather has done; they would have taken every measure available to them to extend their own lives. It goes without saying that Heather wants to be there for every graduation ceremony, wedding, and someday the birth of our grandchildren. So do I. And if I can be given information on how to increase those odds, I’m game. 

Another important thing for me, and my advice to anybody making these choices, is to seek genetic counseling. As I read the Color Genomics consent form this morning (I know, who ACTUALLY reads those?), I noted that they offer genetic counseling at no extra cost. This is a huge bonus in my opinion. My doctor provides great counsel in the context of how we can use it to holistically address my health, but I will absolutely contact Color and take advantage of that genetic counseling service. Our BRCA journey started with an amazing team of counselors and physicians from Huntsman Cancer Institute in Salt Lake City, Utah. The team there, over 13 years ago now, set the stage for taking an informed approach to all we do. They helped us navigate considerations that we hadn’t thought about. These thought provoking discussions have helped us better manage our own expectations and those of our loved ones. 

So for now I’ll wait for my results and consider these questions with my wife. Until then, I’ll be satisfied that “knowing” is in my future, and for me, knowing is half the battle.