Saturday, December 20, 2014

A Year in Pictures

It's true. I have basically failed as a blogger this past year. So how can I quickly sum up the beauty of a year that has gone by virtually undocumented in writing? Through pictures, of course! Here, my friends, is the Koelling Clan year in review...

Ember has evolved from a three year old into a "four going on fourteen" year old. She uses sayings like "what the heck?" and picks out her own outfits (which always involve at least three different colorful patterns and sparkly shoes). When I ask her how her day was, she tells me her mouth needs to rest. But she still needs cuddles before bedtime, and hugs. Lots of hugs (which we also LOVE giving her).

Oren has grown from a babbling baby into a very verbal, expressive toddler. He continues to be full of giggles and charm, and his favorite pastime is pretending to be a dinosaur. And then a kitty. And then a dinosaur. Oren gives million dollar hugs. Seriously, if you are ever sad, come over to our house and ask Oren to give you a hug. You will instantly feel better (until we charge you a million dollars)! He is a champion napper. He is amazing at puzzles. He ALWAYS has a cold or allergies. And he LOVES the YouTube video of "one potato, two potato."


This photo is a rare family photo of all four of us, taken during the summer. I tell you, there are annoying sides to parenting, like the fact that dinner is always chaotic, and there are always twelve loads of laundry to be washed, dried, and folded. But when the four of us huddle together like this, and our world is just a tiny microcosm of pure love, parenthood is perfection.

A photo of me and the kids. See, I told you that we hardly ever have a photo of the four of us!! This was taken at Em's camp this summer, which was a transformative experience for her.


Perhaps my favorite photo of the year, because it just says a lot about life, about having children, and about how beautiful the world is. This was taken on our vacation at the Cape, which we were generously invited on by my amazing Aunt Ellen and Uncle George.


The children love playing outside, and the fall was a perfect time to enjoy our new backyard, playing with bubbles and piles of leaves. And worms. Big, fat, juicy worms. Oren especially loved making two worms out of one worm and making his mommy gag.

Our kids being themselves, which basically means Oren creating a humongous mess and loving every minute of it, and Ember hamming it up and using her imagination to make the ordinary extraordinary.


I am not a huge fan of winter. Ok, I am not at all a fan of winter. I see winter as a five month long torture device that allows me to appreciate the months that are NOT winter. But what I DO love is seeing my kids LOVING the snow, and catching snowflakes on their tongues, and making snow cones. They are allowed to love winter, because they don't have to drive in it.



And THIS is what every parent looks forward to seeing at the end of a long day. Even if your four year old daughter is wearing a bathing suit on her head, as long as she is peacefully sleeping, it's all good.

There it is. A year in photos. 2014 was beautiful. 2015, here we come.

Wednesday, December 17, 2014

Turning a Positive Result into a Positive Decision


Approximately two minutes after I found out I was BRCA1 positive, I knew I would be planning a preventative surgery to help drastically lower the odds of my getting breast cancer. Knowing that my mother had had a clear mammogram just months before being diagnosed with Stage 2 cancer made me want to aggressively fight my odds of getting an especially aggressive mutation. I knew that vigilant monitoring through mammograms wasn't for me, and that I would lose sleep for weeks (or months) before each yearly exam. 


So surgery seemed like the best option. Or maybe the "breast" option?


But At the beginning of this journey, I had no idea how many options are available for mastectomy and reconstructive surgery. 


I first visited with three local surgeons. Each one of them kindly told me I was a good candidate for implants, and discouraged me from thinking about other alternatives. They gave me pamphlets to read, and I read them and tried to wrap my head around the idea of implants. Honestly, the thought of an implant didn’t sit very well with me. Mostly, I couldn't picture myself as a 70 year old woman with implants. When I asked the surgeons if I would need to replace the implants as my body aged, they said I would, as if that was a given, and did not seem to acknowledge the fact that it would be a HUGE inconvenience to have to go back for repeated surgeries. Upon further investigation, I found out that many women have complications with their implants, ranging from minor to major. I just didn’t feel confident going that route.


So I decided to widen my scope. I turned to the support group FORCE (Facing Our Risk of Cancer Empowered), created for those who are BRCA mutation positive. Through various message boards and posts on the FORCE website, I found out about the DIEP FLAP surgery, where they use your stomache tissue (sparing the abdominal muscles) for the breast reconstruction. It involves microsurgery and reattaching blood vessels, which of course sounds scary and intimidating, but the women who have braved these procedures, overall, seem MUCH happier than those who have opted for implants. Many FORCE members recommended two breast reconstructive  centers, one in New Orleans, and one in San Antonio, for this type of surgery.


I reached out to both centers, and got two very different responses. When I contacted the Center for Restorative Breast Surgery in New Orleans, I was asked for my contact information and was told I would get a call back... which never happened. When I contacted PRMA in San Antonio, I was immediately connected with the patient advocate, Courtney, who was incredibly welcoming, informative, and an absolute pleasure to speak with. She made what could have been a very uncomfortable, stressful conversation a very easy, very comfortable one. 


Based on surgeon recommendations I saw on the FORCE website, and my two very different experiences with New Orleans and San Antonio, I asked Courtney if I could set up a consultation with Dr. Minas Chrysopoulo at PRMA. We scheduled a Skype consultation in October. I expected to speak with Dr. C, as everyone calls him, for maybe ten minutes (that was about the length of time my other consultations had lasted). Instead, Dr. C spent at least 45 minutes to an hour talking to me about my decision and the DIEP FLAP surgery. I was so impressed with his patience, attention, and care. And he didn't talk to me like I was a PATIENT. He talked to me like I was a HUMAN BEING. One of the first things he asked me was whether or not I have children, and when I told him I have two little kids, ages 2 and 4, he said, "that BY FAR is going to be the biggest challenge of having this surgery." He got it. He understood the effect of this surgery, far beyond the borders of the operating room. And we had only been talking for two minutes. Dr. C also did everything he could to set realistic expectations for what I would go through, and what the outcome would be. He was transparent. He didn't romanticize anything. He was confident but humble. And by the end of the conversation, I knew I had found my surgeon.


Following the consultation was the long and anxiety provoking wait to hear whether my insurance would cover the surgery. I may have emailed PRMA six or six hundred times to check in on the status of the approval. But when the call finally came, and Courtney told me I was approved to schedule a date for the surgery, I truly felt like screaming "hallelujah!"


So I set my date for the surgery. I have gotten my insurance approval, gotten the ok from work (thank goodness for understanding employers!!), booked our flights, reserved a hotel, and rented a car. I have requested the help of my Eema, my stepmother, for the days following the surgery. I have had conversations with brave, beautiful women who have gone through this surgery and have generously offered to share their experiences. I have had a CTA scan in preparation for the surgery. I have had several conversations with lots of folks who only know about prophylactic mastectomies because of Angelina Jolie, which makes me more grateful to her for going public with her decision. I have scoured the Internet for packing tips, tips on how to prepare (mentally, physically, emotionally) for this surgery, tips on what to expect in the days following the surgery, and tips on where my husband can take the kids in San Antonio (though unfortunately a lot of attractions seem to be closed in the month of February). 


And now I am actively working on staying calm, staying healthy (a big challenge in this household of tiny children), getting organized, and becoming as well-informed as possible. And being a wife and mommy. And working full time.


 It's a lot, but I think I can handle it. 

 

Back to the Blog



It was just about four years ago that I flew out to San Jose to see my mother for the last time before she passed away in February of 2011. It was just about four years ago that I got to hug her for the last time, kiss her face for the last time, tell her I love her for the last time, and most importantly, make sure she knew I forgave her for not being a perfect parent. 

Unfortunately, a very busy life does not leave much time to mourn. Rather than putting aside time each year to grieve for my mom, I have let the comprehension of her death sneak up on me and surprise me at very random times, in very random places. I will be driving to work, or putting the kids to bed, or emptying the dishwasher, and a sense of loss will creep up behind me and put me in a choke hold. Suddenly I will be crying, and feeling like a child, and remembering my mom standing there, with sewing pins dangling out of her mouth while she worked on a craft project. She was almost always working on a craft project.

My mother was 63 when she died, after an eighteen year long battle with breast cancer. She was BRCA1 positive.

In February 2015, just two months from now, I will be commemorating the four year anniversary of my mother’s death in a unique way – by getting a prophylactic DIEP FLAP mastectomy in San Antonio, Texas. The journey to making this decision, ever since discovering my BRCA1 positive status in October of 2011, has been long and complex, but I am glad to have a plan, and a set date for the surgery. 

I haven’t written much on this blog for some time now, and I feel immensely guilty for not better documenting our family’s life the past couple of years. It seems like the minute Oren was born, any free time I had for blogging went out the window. I know it is so unfair to him, that I have this tome of writing describing in great detail Ember’s first few years.. and what? Maybe three posts about him, since he was born? This lack of writing is no indication of lack of love. I love Oren far beyond words. The lack of writing is just a testament to how busy we have been.

But once I decided on having this surgery in February, I decided that I REALLY want to reboot this blog, and to use the surgery as an opportunity to start writing again. I know that blogging will be immensely helpful to me, to my healing, and to just keeping me busy while I recuperate. I know I will have lots of “down time” coming up, and that I will be able to use the time to write about the kids and our family. I ALSO want to document my journey, so that it might be helpful to other women who are choosing to go through the same procedure I am going through, and so that, God forbid, one of my children has inherited this genetic mutation, they will know more about the choices I made to try and improve my odds of not getting cancer. In preparing for my own surgery, I have searched the web and found many invaluable pearls of wisdom from other BRCA positive women who have had mastectomies, and so blogging will be one way through which I can “pay it forward.”

So welcome back to Mooshkatoo. I hope you enjoy reading my upcoming posts as much as I will enjoy writing them.