Okay, fine, I have to say something. First, I applaud Jolie for writing a very good piece in the NY Times calmly and rationally describing her decision. I think this is really going to boost awareness about hereditary breast cancer, and that is a good thing!
On the other hand, I have already seen and am afraid of more people being quick to judge and make conclusions without the correct information. My best piece of advice for everyone is to EDUCATE YOURSELVES and make sure you aren’t blindly following the news or listening to moronic website comments. BRCA gene mutations are serious business, as are preventive surgeries. There is so much information out there that is easy to find (visit facingourrisk.org, for instance), so there is no excuse for ignorance, vitriol, or fear-mongering.
This video is my oncologist, Dr. Kaltman, from GWU Medical Faculty Associates talking about Jolie’s decision and BRCA mutations. I am posting it not to advertise GWU (though I do love my onco), but to provide some straightforward information.
Before I step off my soap box, I also want to admit that I’m angry. I’m angry because I know Jolie had the best doctors money can buy and I’m sure her reconstruction will be flawless so she can look perfect on the red carpet. I was not so lucky and I know many other women out there who were in the same boat. A mastectomy is not all roses and rainbows, it hurts physically and emotionally and, for many women, things don’t go as smoothly as Jolie’s writing suggests. Most women do not recover in a couple of days and they are often very uncomfortable with the way their body appears post-surgery. But while I’m angry, I am trying very hard to also be accepting and kind, as I always do when I hear about previvors who have “perfect” results and go through life never having to know the turmoil of a cancer diagnosis. I guess what I’m saying is we should all love our fellow man, especially around the tender issue of cancer. We are all different and when someone else has different feelings or experiences, it is not good to respond by badmouthing them in public. (Of course, feel free to gripe all you want in private. I, for one, am going to go scream into a pillow.)
As my dad pointed out to me the other day, when you Google my name, a whole new host of sites pop up. That’s partly thanks to this snazzy new video featuring, well, me, that was filmed by the good people at the George Washington University Medical Faculty Associates, where I have been receiving all of my cancer care.
Survivor : Cara Scharf from GW MFA on Vimeo.
A couple weeks back, the marketing department at MFA wanted to create a profile of a cancer patient, and my wonderful breast surgeon, Dr. Christine Teal, recommended me. I worked with Brandon Bray, a wonderful filmmaker, to put together the above video, which I think turned out beautifully. When I was approached to be profiled in video, my answer was of course, “YES!” Though it does give me pause to think that some people who don’t know what I’m going through might find this, that’s a small price to pay given the enormous desire I have to educate people and let other young women with breast cancer know they are not alone. It’s why I keep this blog and why I am proud of this video.
Please watch it and tell me what you think.
Well, folks, I never thought this moment would come but the ball is rolling on my chemo treatment and it’s scheduled to start next week. Today was the first step in the process: an echocardiogram to get a baseline of my heart function and make sure it’s healthy enough for chemo. It was a totally non-invasive procedure – they put the sticky nodes on my chest and then used an ultrasound probe positioned on my chest to get an ultrasound of my heart. No big. Honestly the worst part is when they pull the sticky nodes off! I also have a scheduled meeting with my onc’s nurse tomorrow and a port placement next week. If all goes according to plan, I’ll start chemo next Thursday (eek!).
Leaving the building felt surreal after the echo. Every once in a while I have these moments where I still can’t believe this is my reality. I still can’t believe I’m a breast cancer patient, that I had a double mastectomy a month and a half ago, and that I’m about to go through chemotherapy. Does it ever really sink in?
The cold cap therapy is still on my mind as well as I struggle with the decision to do it or not. I think what scares me the most and still makes me keep the option open is the possibility of permanent baldness. I will talk to my onc tomorrow to see what the real likelihood of that is. If it’s a very small percentage, I’m thinking I might ditch the cold cap idea. Too much hassle. If it’s a higher percentage than I expect – well, maybe I’ll say “bring on the brain freeze.” Why is this decision so hard?
Check out the video below on how to use cold caps. I’m researching all I can before making this decision.
Posted in cancer, Clinical stuff, Doctors, Personal musings, Videos
Tagged anxiety, chemotherapy, cold cap, disbelief, echocardiogram, fear, hair loss
The Web and all forms of social networking are pervading our lives. I mean have you been following the Iran election struggle and all the Tweets that accompany it? I think it’s pretty crazy, but also pretty awesome how readily available this information is. Sometimes it’s even better than the news (and sometimes it’s IN the news… the NYTimes has taken to quoting Twitter!).
Well it’s in the BRCA world as well. Today I read in the Hartford Courant about a girl who’s been posting videos on Youtube about her experience with BRCA and with ovarian and breast cancer. She talks about getting a double mastectomy and chemotherapy, and provides some practical and much-needed advice and support for women. I think it’s worth checking out, so I’ve put it here.
As it says in the Courant, she found lots of videos with older women that didn’t really relate to her, and I feel the same way. Not that older women aren’t great, but I think there need to be more resources for young women.
She has 2 videos, this is just one. But check her out on Youtube under ucnhuskie.
Thanks Jessica for giving us this glimpse!