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. 

The Other Man

I write this post mainly for the male supporters in our lives.  The ones who would do anything for us.  The ones who we love more than anything.  The ones we've dedicated the rest of our lives to.  The ones who are standing by your side through your diagnosis, your treatment and your recovery.  The ones who kiss us good morning and kiss us goodnight.  The ones who may not understand this new relationship with the "other man" in our lives right now, but who will hopefully sympathize with what we're going through, and later understand what it was all about. My husband falls into this category.  We might talk endlessly about this other man, sing his praises and confer with other women about him, and I want to help you know why we do it.

Women, by nature, have basic needs that need to be met.  We need to feel safe and secure, we want to know we are loved, we want to nurture, we want to be appreciated, we want to feel like we can count on someone and we want our feelings to be understood (even if you don't really understand).  We form relationships and bonds with others when these needs are met.  Women hold relationships near and dear to their hearts.  We protect our relationships.  Its natural.  Its why you are number one in her life right now.  You met her needs.  So what's going on with this other man she's talking about so much?  She's made a new friend, that's all. 

                                                 

When a woman goes through something life-threatening or life-changing, the people immediately involved in that experience become forever bonded at the heart.  For example, her doctor.  He becomes a hero in her life.  This can be any doctor in her life.  Her therapist, her OBGYN, her surgeon...you name it.  They see her through some of the hardest times in her life such as dealing with trauma, welcoming new life into the world or helping her go through the struggles of conceiving, or even performing life-saving surgeries.  This is a person who listens, sympathizes and shows concern for what she's going through, just like you do.  We, as women, tend to open up and talk to these people in our lives.  We love to talk.  And part of a doctor's job is to listen.  We like that too; we value that.  So its completely natural that her doctor becomes an important person in her life with whom she connects and holds dear.

I recently read an article that I can't get out of my mind called, "It is OK for the doctor to cry."  I was so touched by the story as it was so refreshing to hear the other side of the doctor-patient relationship, from a doctor's perspective.  It's not often you hear this, nor find it.  It's actually quite rare in my experience.  Early on the author recounts a moment with one of her patients:

She begins to weep into her husband’s chest but somehow manages to thank me for taking care of her for the past week and being “one of her nicest doctors.”  She even stands up to hug me.  I leave the room really quickly with tears forming and sneak into the bathroom as I begin to cry.

This doctor is humanized.  The doctor met the emotional needs of her patient, and a bond was formed.  The articles goes on to describe the compassion a doctor forms for her patient, and how she sees her patient as something more than a medical file number.  Her patients are mothers, fathers, sisters, brothers and more.  This is how I felt.  The author ends by saying:

Yes, we should distance ourselves emotionally if it affects our medical decision-making but when it boils down to patient care, feeling for a patient and his or her family makes medicine humanistic and real.

My journey was all about forming relationships.  I "read" people quite quickly, and I make decisions based on connections and my heart.  I know when I don't feel good about a person, or when we're not a good fit.  I made judgements based on comments doctors made in social media, on reviews left by other patients, by how the front office handled my calls requesting information and by how I connected with the doctor (IF I was allowed to actually talk to the doctor).  I needed what the article said, "make medicine humanistic and real."  If my needs weren't met, you weren't going to touch me with a knife.  My husband knew I had made my choice in surgeons a long time before we actually Skyped with my surgeon, as I had a good gut feeling from the PRMA patient liaison, Courtney, with whom I had been working. I couldn't stop talking about PRMA and Courtney.  Everything was, "Courtney said...", or "Courtney's so nice" or "Courtney is probably so sick of me...".  

 My needs, however, were eventually met with my chosen surgeon, Dr. Chrysopoulo.  He was real.  He IS real.  He provided assurance early on that built my trust. Throughout the process, he made comments that personalized the experience like, "if it was my wife...," or "you're the love of his [my husband] life and mother of his kids. Doesn't matter how positive you are...all bets are off [referring to my husband's biggest fear being that they'd find cancer when operating, but hiding it from me till all was said and done]."  My doctor cared about us as a family.  He took the time to ask my husband how he was really doing, husband to husband, after the surgery.  I kept telling my surgeon that I trusted him because he had taken the time to build the trust.  During my in-person consultation, he'd ask me if I wanted A or B, and I'd reply telling him I trusted his opinion and left him with the ultimate decision.  He had been welcomed into the 'circle of trust.'  He humanized the experience, just as the doctor said in the article.  In return, my husband listened to a lot of, "but Dr. C said.." or "according to Dr. C...".  I get it.  I talked a lot about my doctor, still do.  And Denise...oh Denise.  She's my nurse, and she's wonderful.  Up until my last day in the USA, I kept referring to Denise like she was my BFF and my husband would laugh.  She captured my heart too.

                                               

In a recent article, I spoke about the power of social media.  My doctor is wonderfully involved in it.  It's fun to see him interacting with people, patients, strangers and other doctors.  It's more fun to see how many other women are out there speaking highly of him, you're proud that you chose someone so revered.  I've become friends with some of his patients, like Terri, who also formed a relationship with him.  She spreads the word about how wonderful he is as well, like a personal cheerleader.  We love what he's done for us, plain and simple.  He's a doctor, he's brilliant at what he does and he cares for his patients.  We've gone through a very emotional time together, so of course we're all connected by that 'something common' between us.  I was talking to a friend from home this morning about my experience and how I was going to write this blog post.  She replied with, "it is such a unique relationship and situation." She totally understood and felt that I should write this to help other men understand what is happening.

My husband gets it now.  He said today, "I totally get (and support) the bond that you have. He essentially saved your life, and those words went through my mind weeks ago."  I know it must be hard to have your significant other speak so highly of someone else so often.  I don't think I'd like my husband coming home from his appointments speaking about his amazing female doctor and how supported he feels by her!  Not fair of me, I know.  But in the end, we're all friends now.  We can all chat like we've known each other forever, and we're all connected via Twitter and Facebook as well.  In the end, just consider your significant other's doctor, with whom you've all shared a major life experience with, as another friend to add to your circle.  At least that's my hope.  I hope you have a doctor who humanizes your experience.  However, I don't think my husband and I will ever be able to call him by his first name...he'll always be Dr. C to us.

A Husband's Story-The Supporter

I wrote about the very beginning, finding out Heather was BRCA1+ and supporting her desire for surgery.  I'm fast-forwarding to the end, because that's a major key in planning the surgery.  You, as the supporter, will need to know what to expect in your role, and I want to give it to you while fresh in my mind.  Essentially I was Heather’s 24/7 on-call nurse. Here’s what I did to help out:

While in the hospital:

• Help her feel comfortable by doing small things like adjusting pillows under her arms and remind her to press the meds button.
• Feed her ice chips, or water, or anything she wanted to eat.
• Communicate with anybody who needed to speak to her.
• Take her for walks. (Hopefully that didn’t sound like Heather is my canine friend.) We took little 5 minutes strolls to get her up and moving, 2-3 times a day. 
• Remind her to use the IS (incentive spirometer) device. This is a tool to encourage healthy breathing and keep fluid out of her lungs, which is a risk after surgery. 
• More than anything, just BE there. The nurses could have done the things I mentioned above, although not with the same frequency and/or attention, but the main reason I didn’t leave during the 54 hours she was in the hospital is because I never wanted her to feel alone. I did take a few “breaks” by going to the cafeteria and sat there to eat. 

After the hospital:

• Again, comfort was my main goal. (Helping her adjust in bed, prop her up with pillows, etc.)
• Without the hospital nurses, I was also now the one delivering medications, which also meant setting alarms for crazy hours to make sure she never got to the point where we were “too late” and playing catch up on pain relief. 
• Drains. I was on drain duty for 9 days after we left the hospital. The drains didn’t gross me out, but it might make some queasy. The fluid wasn’t bad, but I do admit that the few solids that came through the drain tubes weirded me out a bit. But of course I never let HER know that.
• Showering. Instructions were to shower daily. I’m lucky that Heather and I are comfortable with one another. I can see how this whole process could be humiliating to the person receiving the help. I don’t know if she felt that way, and she certainly shouldn’t, but it’s that whole idea of not being able to take care of yourself and being dependent upon others to do very personal things. 

Support for the supporter:

There’s definitely a lot of pressure when you’re the designated support person. It’s possible that others can work “shifts.” Since we came in from out of the country this wasn’t possible, and even if you’re traveling from another part of the country it’s not cheap to have additional people travel to support you. However, if you have kids and you plan to have them with you, I highly recommend another person coming with you. 

So before going further I have to give mad props to my mom. I’m not sure how we would have done this without her flying in from Utah to support us and occupy the kids for five days. For about four of those days, I was fully dependent on her to help with the kids as I attended to Heather. I really didn’t think that I would stay at the hospital for three full days like I did. Yes, I could have left at night to be with them, but I wanted to be sure that I was there every second I could be to support Heather. My mother’s presence allowed me to do that. For that I’m very grateful, as is Heather. Thanks, Mom!

I also have to thank Denise, my wife's nurse.  I was able to keep in contact with her throughout the recovery, via email and phone.  It was nice having that personal access to someone who could answer our questions.

Lodging:

Also, I can’t stress enough how amazing it was to rent a house for 10 days instead of being in a hotel. Our Airbnb listing in San Antonio was perfect. It was close to the Medical Center and PRMA, close to amenities (food, parks, groceries, drug stores, etc.), and our hosts were so kind and concerned with Heather’s progress. We were able to have the kids playing games and watching TV in one room while she rested and healed in another. We were also able to stock up on groceries and live life as we would have if were in our home town. This feeling of belonging was priceless. I can’t think of another lodging situation where we could have felt this way.

- Jared

Comforts of home were truly appreciated.

A Husband's Story- Finding Out

It’s hard to put myself in “her” head. It’s hard to fully empathize. My parents are still alive. I did watch my paternal grandmother go through breast cancer and a subsequent mastectomy, but I was about 13 and fairly detached from the situation. But I’ve seen the pain and fear in her eyes. I know that what she experienced with her mother was horrifying for her, and I know that her biggest fear now is watching her kids experience the same trauma of watching their parents suffer. That is the fuel that I use.

To be clear, I’ve had a lot of time to prepare for this. We found out that Heather was BRCA1+ shortly after our oldest child was born. Around 10 years ago. At the time there were options for mastectomy, but nothing was clear about reconstruction. Honestly I don’t recall the options that were presented, but I do remember that we considered them, and we also knew we wanted to have more children. (Two girls later we now also have two future BRCA1 tests yet to be taken, but that will be a future chapter.) After several years of delays, here we are. 

Coincidently Angelina Jolie had a preventive mastectomy recently. The publicity certainly made it easier to explain when people asked what Heather was having done. “She’s having the Angelina surgery.” They didn’t know that we had been planning this for nearly a decade, and that’s ok. Angelina going public brought awareness to the BRCA mutations. Before that, most people’s eyes just glossed over when we talked about it.

Three reasons for her "why"

Let’s be honest here. As Heather has admitted in her blog, she’s excessively Type A. She did 99% of the planning and work leading up to to the actual surgery. I made some calls for insurance, and I booked the car and part of our lodging for the month, but she did all of the hard work. She worked tirelessly with PRMA to ensure everything was in place. She followed their instructions to a tee, including cutting out Starbucks and the occasional after-work glass of wine, during some of the most stressful weeks we can remember. She even worked to finish a lifelong dream of finishing a children’s book to help small kids and parents communicate with each other about going through cancer. Amazing, right? So before I say anything about how much I did to support her, I want to make it clear that it’s easy to support a woman who is incredibly strong. And if you’re reading this, considering this decision for yourself and thinking that maybe you couldn’t be as strong as Heather, maybe one of my favorite quotes can help you. 

“Courage is not the absence of fear. Courage is action in the presence of fear.” 

-unknown 

Just choosing to go through with this surgery is a huge showing of strength and courage. There was a LOT of fear here for Heather, but not more than leaving our kids behind too soon. And to reiterate, this decision isn’t about us. It’s about taking steps within our control to limit the possibility of our kids losing their mother the same way she lost hers.

- Jared