Kudos to Angelina Jolie for sharing her tough BRCA story. Her efforts will undoubtedly make a difference in the lives of BRCA men, women and families. In the last week, a few other locals championed for HBOC advocacy & awareness. Thank you to Dr. Pikaart, Dr. Green-Cheatwood, Penrose-St.Francis Health Systems, KKTV, KRDO and the Gazette.
Train wreck April 13, 2013
Overwhelming emotion surged through me just now. Yesterday I was in an appointment with my plastic surgeon to review my nipple healing progress. There, I was told that I could proceed with scheduling the next and last step: getting my areolas tattooed. I waited as they gathered the business card and had a call in to the medical tattoo specialist within a blink of an eye. I left a message about how I will be ready in four weeks and figured a call back would occur sometime soon. When my cell rang today, I did not expect it to be the artist. We discussed the various elements that make it seem more like a typical tattoo studio…payment upfront is expected, the color is of my choosing and I almost asked for a book to review pictures of her work.
With all the joking that has been made – a majority of which was by me – I just want to be normal: normal color, normal size, and normal areola shape. And, I want to stop scheduling my procedures so that I’m healed enough to take trips with my family. Can I go into a pool? Will I be okay? As a mom, my desire is to have less of an impact on my family. Personally I can sit by a pool or hot spring with a People Magazine and healing nipples. But, it kills me to not participate in the family events that include such things.
We are heading out of town this upcoming week, and I have been approved to go in the chlorinated pool in Moab and the sulfur-infused hot springs of Pagosa Springs. Four weeks from now, I will get some fresh tat’s and should be healed in time to visit family in Phoenix over Memorial Day. That’s all great, so why did I hang up the phone after making my appointment and start sobbing?
The kids rushed over to see what was wrong. In between breaths, I assured them (sort of) that they were happy tears and that everything is okay. I just needed a minute.
I called Kevin and scared the “shit out of” him…for no real reason in his guy’s mind.
I called my mom twice.
I called my mother-in-law.
Then I got my shit together. It has indeed been a long road but nowhere near as long as others have endured. My individual journey is coming to an end of this chapter, but I will be forever changed.
In my mind, I am certain that I have been changed for the better.
Sometimes, my heart just needs to catch up.
Twenty Dollars March 17, 2013
Advocacy comes with ebb and flows. When there’s drama and immediate stories, attention runs deep. When only nipples are involved, attention and money wanes. It’s understandable. As humans we are easily distracted. There are many, many important issues to pursue, and God only knows that each of them are deserving of attention. I am participating in a “First Giving” campaign that is a fundraising initiative centered on hereditary breast and ovarian cancer (HBOC) outreach. My goal is $200. While that might be a huge amount to some or a
drop in the bucket to others, it is a goal that I hope to achieve. However, my immediate
family has already supported me through all of the surgeries and subsequent drama. Tapping them for more is not right. Tapping anyone that doesn’t have discretionary money isn’t either. If you have the affinity for HBOC advocacy and have a couple bucks to spare, please participate. Each dollar counts, and I can’t begin to explain how much I appreciate the anonymous donor that gave the first $20 today. When the donation announcement hit my email, I went to my husband
and hugged him (thinking it must have been him). I thanked him for being my first donor, and he looked at me like I was crazy.
I was wrong. It was not he.
It was one of you.
Whoever was my first donor: thank you very, very much.
Your encouraging words remind me why I’m doing any of this: together we can improve the HBOC picture. F the C word!!!
It’s in my head too… February 18, 2013
BRCA wreaked havoc on the bodies of many women (and men) last year – not only in terms of cancer, surgeries or treatments but also in charged emotions and relationships. While the knowledge of a positive or negative diagnosis is certainly powerful, it also creates an overwhelming laundry list of next steps. Sifting through then prioritizing the amazing amount of information and options can be daunting. So, how do we figure it out? I’m no therapist or perfectly managed individual but one thing that helped me was a tool called “mind-mapping.”
Much like the genetic family tree a high-risk individual completes when preparing for appointments, mind-mapping creates a visualization of the connections between what is going on in our heads, our hearts and our genes. The concept has been around since 1972, coined by Tony Buzan in Use Your Head, yet still rings true: connect the dots, organize your thoughts and then work through them…visually.
Mapping it out unveils connections that are obvious and others that reveal a need to look deeper. To take it to the next level, the mind-map can become a guide to journaling through topics that are identified. Sound too scientific? Check out the mind-map below.
If I don’t feel like journaling about a particular one, I can punch my way
through it…in a happy, safe way: exercise.
BTW: I recently joined a kickboxing gym and think a lot about BRCA
when I’m there. The kids think the gloves are the coolest.
Squishy January 6, 2013
After my expanders came out on November 16, I went into a radio silence of sorts. That is, unless you follow me on Facebook where I managed an update or two. I think I just might have been tired. Now, after making it through the predicted ‘end of the world,’ enjoying big smiles from sweet eyes on Christmas and welcoming 2013 with the 6th birthday of our New Year baby, things seem to be getting back to some semblance of normal. This very sentiment was underscored tonight while reading a good night story to my 4 ½ year old. A short book about a boy and his robot resonated with my aspiring superhero. He snuggled in resting his head gently on my chest.
After a few pages, he poked my breast and said, “It’s squishy.” Lying there I couldn’t help but smile. “Yes,” I responded, “doesn’t that feel better?” Out of context this may seem an odd exchange. However, in true nature of a buffer-less child, it was perfectly sweet.
The tissue expanders that I donned from July 25 until November 16 not only hurt, they were harder than rocks and certainly not worth snuggling up against during story time. Using his 4-year-old-drawl, Carter continued, “Does this mean you don’t have to go back to the hospital for surgery? You don’t have to go back to the doctor???”
“Well…yes – for the most part,” I responded, “I’ll still see a doctor but not for any more surgeries. Doesn’t that sound nice?” He poked my breast again and seemed satisfied with my response. With that, I was essentially dismissed to finish the book, tuck him in, plant a good night kiss on his cute little face and make sure his door was left open just so.
As I walked away, a smile was still spread across my face. While the major part of my surgical BRCA journey is nearing an end – a few ‘tweaking’ procedures remain – it feels good to have the big ones behind me. My mind feels clear after a medicine haze, and my energy level is regaining daily. I have time now to do things that I want to do with the family, for myself, with work and for Hereditary Breast and Ovarian Cancer (HBOC) outreach.
I am hosting the first FORCE quarterly meeting of Southern Colorado early February, for there is work to be done. It’s time to connect even more on a local level to discuss treatment options, learn from experts and offer a caring ear as others in the area navigate a BRCA diagnosis or simply have questions regarding genetic testing and HBOC. If you would like to attend, please RSVP to email@example.com.
BTW, 2013 will bring some fun along the way with the annual BRACgirl.com Dance Party scheduled for July 13, 2013! Save the date and come cut-a-rug once again to raise money for research & development. 100% of donations collected will be sent to F.O.R.C.E. (Facing Our Risk of Cancer Empowered).
Happy New Year!
My girl amazes me! Marjorie goes into su November 16, 2012
My girl amazes me! Marjorie goes into surgery smiling, sends me on her errands while she’s in surgery, and comes out of the OR w/ an even bigger smile. We got home a little bit ago and MJ is recovering well.
A woman I met at the FORCE conference is scheduled to have the same surgery as I am today. I sent her a note of encouragement yesterday morning. Her response: she is nervous but is encouraged by knowing that others out there have been through the same and come out okay.