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.


Monday, December 9, 2013

Fun Bags and Party Plans


This is a strange week for blogging. I have an appointment with the breast surgeon on Monday to discuss whether or not she wants to biopsy the lump that she found, you know... the lump that may or may not be something? But because the appointment is taking place  after I typically would post a blog update, I figured I would take this opportunity to update my readers on some of the planning I've been doing.

My New and Improved Boobs with Decreased Cancer Risk
First of all, I want you to know that as a rule, I call body parts by their real names, the anatomical ones. But when talking about fun-new-fake breasts, "boobs" seems like the most appropriate term. So my new boobs, or dare I say fun bags, (which I'm only saying because it works so well for this posts title) will be slightly larger than my current 34Bs, yet not big enough that they require the wearing of a bra. (Yuck! Hate them. I try to avoid them at all costs except when necessary professionally or for lactation reasons). Actually, I'm less concerned about the size of the new boobs and more concerned about their perkiness .  I want my boobs perky. Really, really perky. Even unnaturally perky. Because, let’s face it, they aren't real anyway, so I'm okay with them looking “so good they have to be fake”.

Planning for my 40th Birthday Party
The Location - Flat Bread Pizza in Somerville, Mass. The food is amazing, they always play great music, it's child friendly, and they serve adult friendly cocktails. Plus they have a bowling alley which justifies creating the invitations described below.

The Invitations - Since the party is at a candle pin bowling alley and it's in celebration of both my 40th birthday and a reveal of my new and improved boobs, the invite will feature a photograph of me holding bowling balls up to my chest. Of course the balls will have the numbers 4 and 0 displayed on them. Clever right?

The Look - Keri Russel as she appeared on Watch What Happens Live:



Why?...
1. My hair could actually do this.
2. Because I love anything that has anything to do with Andy Cohen or Watch What Happens Live.
3. I think a low cut jumpsuit is perfect for both bowling and showing off my new body.
4. Keri and I have a lot in common.  Yeah, I know I already did the celebrity comparison thing with Angelina Jolie (http://mymastectomy.blogspot.com/2013_11_01_archive.html) but in the late 90's, I was told I looked like Keri (or more specifically her character Felicity) a lot. I think it was because we both had long curly hair and I, like Felicity, have the tendency to get stuck in my own head. So it seems that emulating Keri Russell's look is a good fit, especially when she looks so damn hot.

The Entertainment - As you might recall, on the night I found out I was brca1 positive, my husband and I stayed up all night long. That night we created a list of dream bands/singers I would want to play at my 40th birthday party (this was in August before Lou Reed passed away.) So here is that dream list, in no particular order:

1. Billy Idol
2. Lou Reed
3. The Replacements
4. The Pixies
5. Duran Duran
6. INXS
7. Frank Turner
8. Corey Hart
9. Bruce Springsteen
10. Iggy Pop

I know I have a few musician friends out there, so if anyone knows anyone who can hook a sister up, it would be much appreciated.

Monday, November 25, 2013

Waiting to Sleep with Brad Pitt

Since you can't talk about being brca1 positive in 2013 without talking about Angelina Jolie, I figured it was time I did so. Even prior to the whole breast cancer gene/preventive mastectomy thing, I have always found myself relating my life to Angelina’s. We were born the same year, we were pregnant at the same time, and (this is going to sound crazy) but we have similar lips! My bottom lip is kind of plump, okay not Angelina plump, but plump enough that it was once something that I felt self-conscious about…until Angelina came on the scene and suddenly plump lips were sexy. So, Angelina Jolie has a long history of making me feel more comfortable in my body.

The timing of Angelina's New York Times Op Ed in May 2013 (http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=0) could not have come at a better time for me for several reasons. I was already scheduled to meet with a genetic counselor and was tentatively exploring a preventive mastectomy to respond to a brca1 diagnosis. I was also having fleeting thoughts that if I followed through with the surgery,  it might impact my sense of self or my relationship. Then all of a sudden, out comes the sexiest couple in the world, as the face for preventive mastectomies! I mean, do you remember Brad Pitt in Fight Club? If that's the reward for a preventive mastectomy, then sign me up!

My research, post-diagnosis, kept leading me to Angelina Jolie. Because of her celebrity, I was easily able to find out things like the difference between brca1 and brca2 and get quick and accurate statistics about my lifetime likelihood for being diagnosed with breast or ovarian cancer.  Since Angelina’s story was pop-culture news, I had the ability to peruse sources like the Huffington Post, New York Times and even People Magazine - reading material which was much more suited to my reading skill level than JAMA (the Journal of the American Medical Association) or any other medical journal for that matter.  

In one of my friendly sources, I came upon the age of Angelina's youngest children at the time of her surgery. (For the record, her twins Knox and Vivienne were 5). Once again I felt connected to Angelina when I thought about how surgery would impact my daughters, particularly my youngest, who is just 2. I was worried about the repercussions of not being able to hold her post-surgery. I read Angelina’s Op Ed piece and and felt validated about my worry. 

I'm so grateful Angelina put words like “brca1” and “preventive mastectomy” in the daily lexicon of so many people. When I tell my friends and family about my diagnosis and upcoming surgeries, I'm able to simply say, "you know, like Angelina Jolie." (Which makes it so much easier than explaining in great detail a medical diagnosis and procedure that I don't necessarily fully understand myself.)  So thank you Angelina for being a sexy, strong, and powerful voice for women taking control of their own health.  I, for one, am proud to be on Team Angelina and am now just waiting patiently for my turn to sleep with Brad Pitt when this is all done.


Monday, November 11, 2013

Reflections on October, A Month of Magic and Loss

It's November and I keep seeing Facebook friends posting their daily lists of what they are thankful for. At the top of my list, I'm thankful that October is over! First of all, October is breast cancer awareness month - this is probably displaced anger, but I'm not a fan of the month devoted to the color pink. (For more on that see http://butterbeliever.com/i-will-not-be-pinkwashed-why-i-do-not-support-susan-g-komen-for-the-cure/) October also was littered with eight "breast cancer gene" related appointments...quite the breast cancer overload. So this November, I'm thankful for an appointment free, pink ribbon free month. Since October was so intense and in honor of Lou Reed, I'm breaking it down to highlight all of the magic (highs) and loss (lows) that happened:


Lets start with my experience with PEOPLE in October:


The Magic
After releasing my blog, the response has been nothing less than surreal.  People who I least expected to express support, were suddenly there for me.  My oldest friends, closest friends, casual friends, friends of friends, and family showed their support through private messages, by reposting my blog, by reaching out to me with emails, phone calls, even by mailing gifts to me.  People shared stories with me about their own challenging times and experiences with cancer. New adjectives were used to describe me that I'm not even sure I deserve: strong, brave, amazing (is that really me?).
The Loss
Well intended, generous, and kind people have their own lives, their own kids, their own jobs and their own problems. People can't be at my beckon call. Nobody could possibly keep track of all my appointments and check on me after each one. As helpful as people are, and as genuine as everyone is when they proclaim that they want to "be there"  for me, I still spent many days of the month scrambling for childcare and often feeling overwhelmed and stressed.

On to another topic...the WAITING ROOMS I spent time in this past month:


The Magic
While waiting for a mammogram I witnessed the most amazing thing. Two friends, who I later discovered were 79, were sitting together in the waiting room awaiting their yearly mammogram. As they sat in their medical gowns talking and laughing, they ran into another girl they grew up with. The three women gossiped and reminisced (again still in medical gowns) about high school crushes, losing their husbands - but having new male companions, they caught up on who among their peers had died, stores that weren't around anymore and grandkids who were too busy with the internet. Eavesdropping on their chat was such a wonderful reminder of how bittersweet life is.
The Loss
I came this close to writing an entire blog entry about doctor's office waiting rooms, but it sounded like a bad stand-up act. Have you ever noticed how depressing the reading selection at the oncologist's office is? But seriously folks... So yes, there were a series of waiting room mishaps: an old lady crying for help from her changing room after an accident with her walker, a two hour wait, and of course the magazines and pamphlets that are exclusively limited to depressing reading material.



Next, I’ll share the good and bad in the content of those many APPOINTMENTS mentioned above.


The Magic
There was the hopeful appointment with the plastic surgeon. Yes, it was the hopeful appointment that included my husband kneading a silicon implant for an embarrassingly long time, but it was also the appointment where we created a realistic game plan for my surgeries (mastectomy and reconstruction) in August.


The Loss
Remember my last blog post about the appointment with the breast surgeon where she found something that ended up being nothing? (http://mymastectomy.blogspot.com/2013/10/i-have-bunny-boobs-blog-post-that_28.html) Well psych, just kidding, it still might be something. The breast surgeon still wants to do a biopsy - so yeah, that sucks. It also sucked when I got a glimpse of my lab paperwork at my pelvic ultrasound. I saw the ‘reason’ for my referral stated in black and white. “High risk of ovarian cancer".  It was kind of a harsh reality that freaked me out quite a bit, on the day of an already not so fun exam.


And one last thought to tie it all together:
The day I found out I was brca1 positive, my husband and I stayed up all night talking ‘till morning. That night, I created a list of dream bands/singers who would come to play my 40th birthday party bash. Number one on my list was Lou Reed. Reed died on October 27, at the end of my month of magic and loss. It seems appropriate then to end with a quote by Lou that speaks to life's lows and highs: “There's a bit of magic in everything, and some loss to even things out.”

Monday, October 28, 2013

I Have Bunny Boobs (the blog post that almost wasn't)

This past Monday I had an appointment that was almost a game changer and I was pissed. I met with the breast surgeon for the first time at what was supposed to be a simple ‘getting to know each other’ appointment. She had the slides from my mammogram from this past May posted on display. One of the images of my breast looked just like a bunny so I snapped a picture of it,  thinking that would be the most blog-worthy thing to come out of the appointment.





Then she gave me a breast exam.

She felt a lump in my left breast, just behind my nipple. My gut told me that it wasn't anything. As it happens, I'm slowly weaning my 2 1/2 year old from breast feeding (no judgment please - one of the benefits of extended breast feeding is breast cancer risk reduction) so I suspected that the lump the surgeon had detected was a milk duct or something. Plus, I can recall the few times I’ve already experienced this - when a doctor finds ‘something’ that ends up being ‘nothing’.

Although this time was different. This time I was stricken with the fact that now I was a known carrier of the BRCA 1 gene mutation. This time, I was aware of the 87% chance that one day, maybe today, that ‘something’ will actually be ‘something’.

After an emergency mammogram and ultrasound on Friday, I found out that this time my instinct was right, and fortunately it was nothing more than a milk duct.

The feeling that I was most stricken by this week was anger, followed by validation. Anger because if the lump was ‘something’, I would not have been able to go forward with the mastectomy on my terms.  I have felt so empowered that I have taken control of my body and I am proud to tell breast and ovarian cancer “sorry, no vacancies here”.  But there was a time this week when I wasn't sure if I was going to have that control. If not for preventive surgeries, between the suggested bi-yearly mammograms, breast ultrasounds, ovarian ultrasounds, and breast MRIs (plus follows ups when something shows up at one of these appointments), I could likely spend a good part of the the rest of my life in doctors offices, frightened and waiting for the inevitable. I'm just not comfortable with that option.

So that's why this week was validating. I have the gene. I will likely get cancer. Now more than ever, I know I want the power of preventive surgery. This year for Halloween I'm dressing as a ninja. I'm 5 foot 2 inches, 115 pounds, and barely have the physical strength to lift my 7 year old, but this year, I feel like a warrior.