It’s been a week since being released from the hospital and not every day has been great. Yesterday was one of those days that I was very tired and on the verge of crying. In fact, I did cry in front of my good friend, Charlotte, who came down to watch over me for the day. Today I fully blame estrogen but realistically, I just needed to get the tears out and then lay down to rest. For some reason, yesterday being one week from surgery brought back emotions of that day. At 9:30 AM on the day of my surgery I turned my cell phone on after having it off from the night before so I could have a nice evening with the family.
Up until that point, the morning had been nice and even a bit relaxing. We woke up slowly and all went together to the kids’ preschool. The kids knew that was the day mommy was going to the hospital as did their preschool teachers. When I returned to the apartment after drop-off, I fiddled around and then turned my phone back on. 18 text messages beeped instantly and I quickly went through them. All but one was encouraging and helpful. Of course, I focused on the single text that was neither. After stressing myself out, I smartly powered my phone down when it dawned on me that I was much better off focused on relaxing in preparation for surgery.
The evening after surgery, Kevin stayed at the hospital with me until the 10 PM news aired a story about BRCA and HBOC. I was out of recovery, in my hospital room and with-it-enough to watch as the anchors discussed my particular story and, more importantly, BRCA.
At the end of that long day and later when my recovery is deemed complete, I know full well that more Colorado Springs residents know more about BRCA than before. And, I know that those BRCA positive people in my community have someone to reach out to. To that point, one woman actually came to my hospital room within an hour of my getting situated. She, too, is BRCA positive and had a lot of questions. We talked for a short time and then I had to ask that we talk again soon as I was still groggy from anesthesia. We have since communicated via Facebook, and I hope to meet up with her soon.
The next step in advocacy will be a magazine spread in Penrose’s fall edition with a reach of 40k readers. The journalist will be interviewing me tomorrow morning. Pictures for the article were taken at the dance party of me, Kevin, our kiddos and attendees supporting BRCA outreach & education.
As with the one text message and one questioning comment from the TV news report, I anticipate receiving trying, sometimes painfully worded, questions from the magazine release. What I will try to keep in mind is that dialogue is difficult for some and down-right painful for others. I have continued my relationship with FORCE and plan to advocate for HBOC research and development on an ongoing basis.
I understand that everyone’s medical, personal disposition, and household dynamics are very different. Consequently, there is not one blanket solution to a BRCA diagnosis. Knowledge can be power; however, my genetic counselor told me that many people she sees are crippled by it. It is scary and action is necessary in whatever way is best fitting for the BRCA affected individual – positive or negative. I am asked frequently what I would recommend others to do and it seems that people are surprised by my response: consult a genetic counselor, learn about your personal risk factors and options, be smart about getting tested – its not something to rush out and do without thorough research/consideration, understand how BRCA can be a game changer for insurance coverage (health, life, etc.), and really, really think before taking action.
