Monday, December 23, 2013

MY WAY of responding to a BRCA1 (Breast Cancer Gene) Diagnosis

I woke up the morning of Monday, August 26, feeling really anxious. I texted my friend regarding some work related stuff that was on my mind, but really the only thing on my mind was the phone call I was pretty sure I was going to receive that day. I knew that my social worker was just returning from vacation, so assuming my test results had come in while she was away the previous week, I knew I would be hearing from her before long.

Pretty early in the morning my phone rang, it was a local unfamiliar number,  I knew immediately it was my social worker. The conversation was short, to the point, and appropriate. She told me that I did carry the same gene mutation that ran in my family, and  reminded me that nothing has changed for me and my body from the day before. She then asked me if there was anything I needed from her and arranged to call me later in the day. During the brief phone call, my 2 year old used the potty and I applauded her. We chuckled at the contrasting levels of good and bad that were being revealed within a few short minutes of each other.

Then in the minutes, hours, and days that followed...

I kind of lost my marbles. Simple tasks overwhelmed me. I was supposed to get a form notarized for a new temp job, and I just couldn't seem to get my act together to do it. I made several trips to various notaries and each time I was missing something. Plus I lost my ATM card.

I felt validated. Breast cancer has shaped everything about who I am. I studied School Counseling in grad school because I was still the sad little girl who had a sick mommy. Since I was 23, I've been getting yearly mammograms, ultrasounds, and MRIs.  All my life I've found myself connecting with other women who also have strong breast cancer histories.  I now know that none of this was in vain, because breast cancer is in fact, very real for me.

I tried to be proactive.  At the same time as I got my diagnosis, I was also stressing about work and finances, so I thought this was an opportunity to make money. Knowing that the breast cancer gene was a hot subject, I looked for ways to sell my story.  I contacted everyone I knew who had connections to journalism or the media.  I came very close to being the subject of an article that the PR department of my hospital was to run in a local paper's "pink issue."  From these half-assed attempts to get my story noticed, my blog evolved. And thank god for that, because I found my authentic and often "edgy" voice (that has since mocked the “pink” movement and the hospital where I'm being cared for). My initial intentions for writing may have been somewhat selfish, but the byproduct has been unbelievable.  I could not have asked for a better therapeutic tool for myself.  This blog has saved me.

I tried to be a bad ass. I bought my first (and last) pack of cigarettes in 10 plus years.  They cost $10. Holy crap! I'm way too cheap to continue that habit.

I stopped sleeping. I was fine during the day when I was busy, but was scared of going to bed and being alone with my thoughts. So I just stopped sleeping. 

But mostly, I felt prepared. Deciding to go for genetic testing was not a decision I made on a whim.  Rather, it was a decision 15 years in the making.  I was first referred for genetic counseling when I was 23. At the time I couldn't fathom why anyone would go for genetic testing, let alone something as extreme as going forward with a preventative mastectomy.  "You can have the gene and not get cancer, or you could not have the gene and still get cancer, so why get tested?"  This was my mantra for years whenever the topic came up, and because of my family history, it came up often. Then, over time, my life changed. I became a wife and a mother, and my priorities changed.  Slowly, I started to reconsider. By the time I went for genetic testing, I was fully ready and prepared to get my results.  Even if they weren't good, I knew I would do anything to be healthy for my family. A mastectomy and oophorectomy were some of the many options I discussed with my social worker and genetic counselor, but they became the only options I was comfortable with. Also, I had already started to think about blogging as I prepared for my 40th birthday party bash. So had I not gotten the diagnosis, I would have had a hard time justifying the extravagant celebration!

And now for a quick update:

I don't know if any of my readers are actually keeping track of my appointments, but just in case, here is the latest: Once I was officially finished breast feeding, I returned to the breast surgeon so she could reexamine the lump that she had expressed concern about.  She said that it has softened, but she still wants to do a breast MRI, which will then determine the next steps.  Fingers crossed it is nothing, so that I can go ahead with the preventive surgeries on my terms. The other day I heard Sinatra's "My Way" and I broke down in tears. It is my one wish for the New Year - that I can do this My Way.


  1. A friend posted your story on Facebook and I felt compelled to reach out. I did have breast cancer 6 years ago and chose to have both breasts removed. It wasn't about the breasts but about my head. Best of health to you. I have another close friend in your position who handled it the same way. It is our way.

    1. Thanks so much for reaching out. No shortage of strong women out there. Hope you are healthy now.