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.   

Monday, October 14, 2013

My Mastectomy, My Blog, An Introduction


I am a mother, a wife, and a carrier of the brca 1 genetic mutation (the breast cancer gene). Just a couple months ago, in August of 2013, I discovered this news and intend to use this blog to document my next year and a half journey. In the months to come,  I will take control of my health by getting both a preventive oophorectomy (ovary removal surgery), mastectomy and reconstruction - all in time to celebrate my life and new body on my 40th birthday in March of 2015.


I intend to update this blog bi-weekly on Mondays (‘Mastectomy Monday’). My intention is to be authentic and honest and to also bring a touch of humor to the otherwise serious subject. When I'm feeling empowered (which I genuinely feel most of the time) you'll know it and when I'm feeling scared or angry, I'll share that too. What you won't see is pink ribbons, posed pictures of me walking on the beach, or inspirational images of me doing yoga beside a Buddha statue. I promise not to be preachy (or at least I'll try not to... I do have soap box tendencies). I'm going to write about my appointments,  and how I'm doing both physically and emotionally. And then, when I need a distraction from all that, I'll write about the Super Sweet Sixteen style, huge 40th birthday party that I'm planning!


Since writing is very therapeutic for me, I’d like to have an audience to share my thoughts with. Please follow my blog and encourage others to follow it as well as this will be your opportunity to keep ‘a breast’ of my journey as I do the exact opposite. Stay tuned for my next blog entry about why I chose to do genetic testing.